My Life With Mixed Connective Tissue Disease

The Long and Winding Road

2010-08-23T11:49:00.017-04:00

"Every ounce of my being is grateful for this glorious morning. I awoke to hear the birds singing their beautiful music, witnessed the sun rays peeking through the rustling trees, and felt the warm summer breeze on my skin as it waft through the open window. My cup runneth over. Sometimes we take every day simplicities for granted. Thanks be to God for today's gift."--Rev Bev'ism

I have so much to be thankful for. A loving family and friends, a beautiful home, and so much more.

But for the last few weeks, I feel like my life is in limbo. For some reason, I just am not catching a break.

In a nutshell--since my last blog---I had finished another round of Rituxan, had received a positive report from the oncologist and was ready to begin a relaxing summer while our son was attending a six week leadership training camp out of state.

After my last chemotherapy treatment in June, it took several weeks for the drug to "do its magic," but it actually had started!!! For the first time in years, I was virtually pain free. It was as if I was no longer being held captive by the that horrible four letter word. P-A-I-N.

Then, in an instant, I was inflicted with another ailment that has literally knocked the crap out of me! My recurring gastro problems have totally taken over my life. So much so...that I cannot eat normally and I am always concerned what will happen when I leave the house.

Now, the doctor part of me knows that I cannot let fear overtake my life. I also know I need to eat in order to heal fully. But it is impossible. I have even tried not to eat...and it just doesn't make a difference.

On top of that, allergy season has hit Long Island head on...and guess who has it bad for the first time in years? Yep...moi!

Despite it all, I have tried to keep busy and not dwell on the ailments. Don't get me wrong...there are days that I just lie in bed and do nothing. I am entitled to do that...it is my right. But I have been making a grand effort to not avoid
situations.

"Instead of complaining about things you cannot control, be thankful that you have the ability to make a personal choice to change those things you can."--Rev Bev'ism

Graduation is right around the corner...and it is the first airplane ride I will be taking since my diagnosis.

Am I scared? You bet...but not of flying. I am afraid of not feeling well. But just knowing that I am attending my doctoral graduation is motivation enough. I have worked too hard for so many years.

In my mind, I pictured myself walking down the aisle with my cap and doctoral gown on...tears in my eyes...proud as could be. And it is almost here.

But first I must get through a lovely colonscopy this week...and as the specialist says...she is taking lots of biopsies along the way. Great! NOT! Hopefully she will find out what is going on and my life can get back on track. It just has to!

Despite the roadblocks, we did enjoy the summer. Our strawberry crop was amazing this year. And our veggies are doing well despite the high heat this summer.We are still harvesting cucumbers, corn, tomatoes, eggplant, broccoli and several herbs.

This was a summer of concerts/live music...my passion. We finally made it to Jones Beach and saw Chicago and the Doobie Brothers. It was amazing. Especially when the two groups got together on stage for the finale. Wow!!! The night on the water was picture perfect!

Our next live show was at The Boulton Center, where we got to see one of my all time favorite 70's groups: Firefall. Three members of the band, Steve Weinmaster, Jock Bartley and Bill Hopkins, performed an acoustic concert that was truly moving. Three voices, in perfect harmony, is something that today's music is lacking.

They had a meet 'n greet after the show, and I must say...these guys are three of the sweetest human beings you will ever meet! They performed ALL of their hits, including "You Are The Woman," "Just Remember I Love You" and "Livin' Ain't Livin."Steve Weinmaster, Dr. Bev, Jock Bartley and Bill Hopkins

On a very warm evening, we ventured to NYC to board the Smooth Jazz Cruise entitled Guitars and Saxes. For any jazz music fan out there...this was truly a treat.Lower Manhattan...simply breathtaking!

Jazz greats Jeff Golub, Peter White, Gerald Albright and Kirk Whalum performed to a sold out crowd, as we cruised around lower Manhattan. With camera in hand, I worked my way to the front and sat right in front of Peter White and shot tons of photos.Many of you know that I have been a huge fan of jazz guitarist Peter White for many, many years, and I have attended many of his concerts. This past year he reached out to me on Facebook after he found this blog, and we have kept in touch ever since.Peter White...making his guitar sing like an angel!

After the show, I walked downstairs to the meet 'n greet to ask Peter to sign a photo that I brought with me. When I said, "Hi, I'm Beverly from Facebook," he said..."You mean the doctor...Dr. Bev?" I started to cry and we gave each other a huge hug and kiss. It is a night I will NEVER, EVER forget. I love you Peter!Peter White and Dr. Bev

A few days later, Peter Noone and the Hermans Hermits gave a free concert on the water at Tanner Park in Copiague. It was wonderful hearing the oldies but goodies including 'There's A Kind of Hush' and 'Henry viii.' They just don't write them like that any more!Peter Noone

In the middle of everything this summer, our son turned 17! Watch out on the roads...he passed his permit test before he went away this summer and will start drivers ed this fall! Believe it or not, he will be a senior. Where does the time go?On the health front...Mom had surgery this summer on her eye, and she looks fantastic. I am glad I could be there for her and am thankful that she is doing well.

My sweet, 92 year old great Aunt Bert had a fall several weeks ago, and is recuperating in a rehab facility in NJ. Her positive outlook and fighting spirit is unlike anything I have ever experienced.

On a final note...I am honored to announce that this very blog, "My Life With Mixed Connective Tissue Disease," was the runner up in the 2010 Best Long Island Blog Contest.

Thanks to everyone that voted for me...for you are the reason I continue to write!

God bless each and every one of you.

"Rejoice...for today is a gift. Grab it tight, and cherish each moment because the next one is uncertain."--Rev Bev'ism.

With a Positive Mindset--Anything is Possible!

2010-06-04T08:15:00.020-04:00

As the morning light shines upon us, a new day is beginning. The temperature here on Long Island is heading towards 80 degrees and I know that today will be a glorious day!

First let me apologize to everyone for my long delay in updating this blog. Believe it or not, six months have come and gone since my last entry. But I want to thank each and every one of you who have called or written to check in on me.

Life continues to have its ups and downs. Within the last few months my health has started to spiral, and I have had some complications. I am re-starting chemotherapy next week, with a positive attitude, as I want to enjoy the summer.

There is so much to do...going to the beach, seafood dinners, swimming in the pool, band gigs, gardening, family trips, playing with my pup...enjoying LIFE!

I had a minor 'blip' a few weeks ago which required a visit to an oncologist. After experiencing strange symptoms and lower groin pain, a CT scan showed some unusual changes within my body. I went for an MRI last week and will be seeing the doctor again on Monday to discuss the findings. However, she is 90 percent sure that it is not malignant. I did receive the go ahead to begin treatment for my autoimmune disease, as my body is breaking down very fast.

On a positive note:

As you all know, I have been attending the University of Metaphysics since 2007. Despite my diagnosis, a greater power has been guiding me to study, and it has been the best medicine.

It is with great pride that I officially announce that I have completed my studies and am now Dr. Beverly L. Boyarsky, Msc.D. I will be attending my graduation ceremony this fall in Sedona, Arizona. Thanks be to God!

I received a personal phone call two days ago from one of my advisors, congratulating me on my accomplishments. She told me that 'I am an inspiration to everyone at the University!' I have been floating on air ever since!

My goal to be a Metaphysician has been reached. People have started to address me as Dr. Boyarsky, and wow...does that sound and feel fantastic!!!American Metaphysical Doctors Association's newest member!

Once my health is back on track, I will begin my new journey as a Metaphysician and Spiritual Healer to counsel others who are either chronically or terminally ill. I want to offer healing for the "whole” person. In other words, mind, body and soul healing are the fundamental principles that I believe and practice.

It is important to remember that if you put your mind towards a specific goal...anything is possible. I am living proof that nothing can stop you...nothing. It doesn't matter if the odds are stacked against you. A positive approach to life, or to any situation, can and 'will' result in a positive outcome.

'Blessings come in many forms and when we least expect them. We must remain open to the possibilities.'-Rev Bev'ism

To back-track a bit, Goldie and I attended training classes this winter to work on some weaknesses and to strengthen our bond and trust. She is the most amazing golden retriever, and the love I feel for her is beyond words. I try to take her for long walks whenever my health allows. But she especially enjoys a ride in the convertible and a play date with her BFF Oakley!

Sally and I had the greatest time in NYC a few months ago. We attended the Wendy Williams Show...what a hoot! That woman is hysterically funny!

We also caught my all time favorite actress, Valerie Harper, in her Broadway play entitled "Looped." Valerie was just nominated for a Tony for her role...she just blew me away!Sally and I walked around the city for a few hours prior to the show, and even stopped by the M&M store where we met a few of the characters. It felt great to act like a kid, even for just a few moments!My family got together to celebrate my birthday and Passover in NJ this year. My brother Scott and I conducted the seder together. That truly warmed my heart! But as soon as we started to read, a bluejay landed on the porch and began screeching. Hmmm...who do you think that was? (Guess he approved!!!)Conducting the Boyarsky seder!

Speaking of bluejays...we set up a bird house right outside our bedroom window. Now anytime we are lying in bed, we can observe the bluejays and cardinals while they enjoy a light snack! The scene outside the window looked picture perfect when the wisteria were in bloom.

Besides the neighborhood birds, our feeder has been the local eatery for another one of God's creatures. Can you imagine my reaction when I opened the blinds and saw this face staring back at me?!!
Over the last few months, quite a number of people have passed from this earth and into God's arms. I want to once again offer my condolences to Ceil, Walter and Heidi on their loss. May you hold the memory of your loved ones close to your heart forever.

Just four weeks ago, my best friend from college, Sharon, suddenly lost her husband. Frank F. Fincken III was quite the character. You never knew if he was kidding around or serious...but he had a heart of gold.

When Sharon originally told me about Frank, back in the 80s, I asked her if his dad was a teacher. Low and behold, Frank's dad taught in my junior high school and had befriended me even though he was never my teacher. Talk about a small world!

Their love was the real thing. They got to travel...and enjoy their furbabies and especially bird watching. I am thankful that they both attended our commitment ceremony two years ago, and spent a few days with us the following summer.

Frankie...please watch over Sharon. Her heart is broken, but she is a strong woman. She has many friends and family members by her side so she isn't alone.Frank F. Fincken III 11/29/57-5/5/10

Rest in peace, my friend. Until we meet again.

While I was in NJ last month, I met up with a few former classmates from the Clifton High School Class of 1976. Wow...did we laugh...and laugh...and laugh. The stories we shared were priceless.

Thank you Rich F., Rich C., Brian, Ray and Meryl for a memorable evening at Mario's. Over thirty years have passed, but true friends will be there forever. Thank you...I truly needed to get away...even if it was just a few hours!(L-R) Ray, Meryl, Brian, Rich F., Dr. B and Rich C.

The school year is winding down for our son, Jarrett. I cannot believe he is finishing his junior year! He attended his Junior Prom and will be performing in the high school talent show next week. I am so very proud of him!Brianna and Jarrett--good friends attended NBHS Jr. Prom

Well, I think I will end here. The day is moving ahead and I have lots to do.

Thank you for your patience and love during this absence. I promise not to wait so long for my next post.

Please keep me in your prayers as I begin chemotherapy. I will get over this obstacle...for God is with me.

May God bless you and keep you, until next time!

'Never give up on your dream. Take each day one minute at a time. Walk straight ahead with one foot in front of the next, with your head high in the air. And before you know it...you will have reached your destiny.'-Rev Bev'ism

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PS...Please cast your vote for my blog. It is up for the 2010 Long Island Best Blog Contest!

http://www.longislandblogposts.com/blogs/mylifewithmctd/medical

My Bucket List: One More Has Been Checked!

2009-12-31T14:24:00.010-05:00

As Long Island recovers, once again, from a few hours of snowfall and the day quickly winds down...the last day of 2009...I look back with mixed emotions on a year that has truly tested my spirit.

Despite it all, I am thankful for all of my blessings and have great strength in knowing that I have unconditional love and support from my family and friends, near and far.

The months of November and December were extremely difficult, but once again, I triumphed over the evils of chemotherapy. The days were uncertain and the nights long and lonely. The side-effects of the drugs wreaked havoc on my mind and body. The pain was often times excruciatingly unbearable and the prednisone made me look like the Michelin tire man.

But...alas...it is December 31st...and I am here to celebrate another New Years Eve. Thanks be to God.

To play catch-up since my last blog post, Thanksgiving was delayed for my family thanks to the treatment schedule, but we were able to be together a few days later. Chanukah was also celebrated in New Jersey a few weeks later than planned, but spending time with my loved ones--no matter the date--brings joy and contentment to my life.

I was able to "get out" for a few fun events, including two separate trips to Westbury Music Fair to see Lily Tomlin and John Edwards. I have to be so careful, especially this time of year, not to mingle with too many people. The cold and flu season is a scarey time, despite the fact that I have been vaccinated for H1N1 and influenza.

Since my diagnosis, the times I cherish most are the ones I spend with the people I love...at our home or the home of good friends. Sitting in front of the fireplace, around the dinner table or on the floor with the pup...each and every day is a gift.

It was one year ago this month that my beloved fur baby, Dylan, passed onto Rainbow Bridge. I see you as I turn each step, I watch for you each day ...Oh little one, I miss you so...Much more than words can say. Your sweet face and loving soul are with me forever. Until we meet again...God bless you.

Long Island also saw a record breaking snow fall...over 2 1/2 feet! Our pup Goldie had some difficulty maneuvering around, but she loved it. Especially when her BFF, Oakley, stopped by for a play date. It was priceless to watch!

Sally and I recently celebrated our tenth anniversary...it is hard to believe how quickly time is passing. I thank God each and every day for bringing my soul mate into my life. People often times never meet the one they are destined to be with...but she is my angel on earth. I love her with all of my heart and soul.

My most amazing accomplishment of 2009...other than remaining strong and a fighter...was to check another item off of my bucket list. Drum roll please...!!!

Believe it or not...on our anniversary, I climbed to the TOP of the Fire Island Lighthouse. As many of you know, it is my favorite place on earth...and I have admired her from afar for so many, many years. But it was my goal when we walked into the lobby, (for the zillionth time!) that I would take each step slowly and reach my goal.

Let me tell you, every step was extremely difficult and painful, but I wouldn't let that stop me. I prayed, cursed, cried...and even thought about turning around. But what is the point of striving for something that you truly want and giving up? I was not going to let this disease stop me from reaching the top of this beautiful beacon of light.

The view from the top of the lighthouse was breathtaking and awe-inspiring. I also took a couple more steps and actually poked my head into the very top and watched both lights rotate in a counter-clockwise direction. I learned that the light that I have admired from afar so much to long, is actually visible for approximately 21-24 miles!!!

Before we left Robert Moses State Park, we walked along the beach and I took in the sight and smell around me. If I close my eyes, I can still hear the waves hitting the white sand...ahhh!

As we drove out of the park, we noticed a young deer grazing along the side of the roadway. Believe it or not, he came over to the car window! I have never seen a more perfect example of one of God's four-legged creatures.
With Sally by my side, I know that I can accomplish just about anything I set my mind to. And it is with that statement that I promise that I will continue to fight for my life each and every day.

2010 will be my year. I just know it. In six months I will fly to Sedona, Arizona and accept my doctorate degree. I can and will achieve anything I put my mind to.

Will there be obstacles along the way as we begin the next decade? Of course. But that should never stop you. NEVER.

I project a white aura of pure God light around myself, and each and every one of you...may you have a blessed New Year.

God asks me to forgive for 2010. I will tear away the veil of misunderstanding with a dagger of love. Today, the last day of the year, I forgive all that have offended me. Peace unto you!

Welcome 2010 with a smile. Look on each new day as another special gift from God, another golden opportunity to complete what you were unable to finish yesterday.

Be a self-starter. Let your first hour of each new day, set the theme of success and positive action that is certain to echo through your entire day. Today will never happen again. Don't waste it with a false start or no start at all. You were not born to fail.

Oh holy one...I live for your truth. Show me the way...direct me to true inner peace. For this direction I give thanks that it is so, and so it is!

God is good...each and every day. Until next year...love, light and peace be with you. ♥♥♥

Namaste.
नमस्ते

A True Test of One's Spirit

2009-11-09T08:00:00.007-05:00

Soul-searching.

Introspection.

Meditation.

Fear.

Lots more questions.

Intermittent tears.

NO ANSWERS.

A deep breath....the countdown begins.

Despite another appointment at the world-renowned Johns Hopkins to see the best vasculitis specialist in the nation, I left with no answers.

That is right...nothing.

The very long road trip down to Baltimore yielded disappointment once again. After waiting hours to see Dr. Levine, he walked in and immediately said he was about to tell me something I didn't want to hear. He cannot help me.

To take you back a bit, I had PR3 and C-ANCA titers checked again and they have continued to be elevated. Most recently on 09/10/09 the lab work showed a PR3 of 16 and a C-ANCA that was still positive. The first doctor said it was definitely not myositis, but perhaps Wegener's...a dangerous form of vasculitis.

According to the doctors at Johns Hopkins, I have mild give-away weakness proximally, but otherwise really normal strength. I suppose that is a "good thing!" Despite the pain all summer, I went to physical therapy and swam almost every day in our heated pool.

An EMG just showed mild chronic denervation/reinnervation of the C7-C8 myotomes and L4-L5 myotomes consistent with cervical lumbar radiculopathy, but there was no evidence of myopathic changes. No myopathic changes...hmmm.

The Johns Hopkins "guru" continued by saying that he does not feel my findings are consistent with Wegener's granulomatosis. (Well, finally some good news!) Although I do have a positive PR3 and C-ANCA antibody, there is no evidence currently of any sinus, pulmonary I have no evidence of any systemic involvement and has no symptoms of a vasculitic disorder.

Okay...no systemic involvement. No vasculitis. Sooooo....????

They also do not feel that I fit into a clinical phenotype of myositis. (That is what the first doctor told me, yet other specialists disagreed!) Dr. Levine stated that clearly I do have some rheumatic features with a history of Raynaud's phenomenon and possibly some sicca symptoms, although it is unusual that they are only unilateral. (Now, understand this is all autoimmune lingo!)

He continued by stating that I have not had a positive ANA or any of the more specific lupus antibodies, but I clearly have a positive C-ANCA and a positive PR3 antibody that has been positive several times. Thus, he does feel comfortable in terming my specific phenotype as an undifferentiated connective tissue disease, although I clearly do not fit any particular phenotype of any of their autoimmune diseases.

Get this:

In addition, the JH specialists have reinforced at this point that my symptoms are mild and seem to have improved after treatment with both IVIG and Rituximab. "If the patient did not have any underlying inflammatory disease, it would be unusual that she would respond so well to such immune therapies." DUH!

So...in layman's terms...I am not imagining my disease. I am really ill. Well, we knew that already! Conclusion? I have a persistently elevated anti-PR3 antibody of unclear significance, and my doctors report significant benefit from Rituxan infusions. Though Dr. Levine cannot fit me into any discrete systemic rheumatic disease phenotype, the presence of the antibody and my response to Rituxan is intriguing; as such he suggests that I continue this Rx, and remain vigilant for the development of any signs of WG that might develop in the future.

Per the guru...Keep on doing what I have been doing. Why did I have to make two trips to Baltimore? I guess for peace of mind. But instead they left me with more questions.

Bottom line? I am sick. I have an autoimmune disease of unspecific origin. I am one of the 15 per cent of the population who does not fit "in the box." He did say that if my blood tests/urine tests/CT scans change...that this disease could develop into Wegener's or worse. I just need to be vigilent. Which I am.

Needless to say, I have been in a state of nothingness for several months. Just existing....no real emotions. I actually had made the decision to cease any future chemotherapy treatments and just live.

Of course my close friends and family are not very happy with that decision, but it is my body and my life. Some say they support me, others are quite upset. This is the reason why I decided to take a break from writing. I needed time to just be.

Several months have gone by....summer is over and the cool crisp autumn air has enveloped the northeast. The beautiful leaves of the changing season have reached the ground and the New York Yankees have won their 27th World Series! YAY!

Goldie amidst the beautiful fall landscape at Southards Pond in Babylon.

Through it all, my strong sense of self has remained in-tact. I know what I have to do. I have to live. And in order to live, I must continue my treatments despite the fact that I hate having that damn poison running through my veins.

Enjoying a relaxing day out east in Montauk with my Mom!

The saying is true:

Defeat may test you; it need not stop you. If at first you don't succeed, try another way. For every obstacle there is a solution. Nothing in the world can take the place of persistence. The greatest mistake is giving up.

2010 will be my year. I will complete my doctorate degree and begin the next chapter of my life. Over the last few months I have been tested over and over again in many aspects of my life. But despite it all, I see a light at the end of the tunnel.

Believe it or not, the long term disability company continues to spy on me...as if I am hiding something from them. Here I am...in all my glory. Look...can you see me? I am pouring my heart out. Have you seen me trip over my own feet....drop my fork as I try to eat dinner...choke while I am drinking a cup of tea? Yes, I am ill...but I still have to try to live. And if I can get outside and do something "fun" that I will...no matter what.

Mark my words...I will defeat this disease...whatever it is...and then all of the insurance companies can kiss my ass. Am I angry? You bet I am. Not at the world....just the system. But they will not win. I WILL WIN!

As I begin my next round of chemotherapy treatments this week...I ask you to pray with me:

God, please grant me the strength to release all negative energy in my body, mind and soul to the sublimating light of your healing light within me.

For it is so, and so it is.

Amen.

Johns Hopkins...Here I Come...Again!

2009-09-21T08:47:00.002-04:00

Unhappy anniversary to me.

It will be five years this week that I left the highly stressful daily life of the corporate world and went out on disability. FIVE YEARS.

It's bad enough what that fact has been doing to my head all of these years, but five years on disability...ME...the work-a-holic for more than 25 years? Ugh.

And to top that off, I really don't know how I am supposed to feel now with my latest news. Numb? Depressed? Anxious? Angry? Confused? Digusted?

That basically describes the feelings I have been experiencing since one of the top neurologists at Johns Hopkins said, "there is no evidence now or in the past to support a diagnosis of myositis."

For more than two years, I have been receiving chemotherapy to treat my "muscle disease." And to find out that I never had a muscle disease is indescribable.

As I wrote briefly in my last blog post, there is a suggestion of a possible autoimmune process. An elevated anti-proteinase 3 antibodies level and C-ANCA suggest a possible Wegeners.

Given the likeihood of an autoimmune process, as well as the fact that I had some improvement with immunosuppressant therapy, I am heading back down to Johns Hopkins for a consult with the top vasculitis physician in the United States!

To top it off, my body is starting to break down at an extremely rapid rate. I am getting weak, very shakey and yesterday my one leg gave out on me in front of my son while we were standing outside of our house. He immediately yelled to make sure I was alright. I guess it shook me up more than I realized...I couldn't calm down for quite some time.

It is six months since my last chemotherapy treatment, and obviously I need some type of treatment. But what? Research on vasculitis/Wegener's basically discusses immunosuppressants, so that may be the route. I just want to find out "what I have" so that I can continue my fight to live.

My schoolwork has been on hold since late March...and I am so close to the finish line. My doctorate degree is in sight...all I need is a clear head and a few months to complete it.

So I am off to the Johns Hopkins Bayview Medical Center Vasculitis Center to find out if they can determine a new diagnosis and, most importantly, a new treatment plan. In between the deep depression and crying bouts, I have realized that I am a truly strong woman who can continue this fight, no matter what. Sure, I was knocked down for a few weeks, but I am up again and ready to take on whatever I need to face.

So bring it on...I am ready.

"L'Shanah Tova. May we all immediately be inscribed and sealed for a Good Year and for a Good and Peaceful Life." Amen.

Not The News That Was Expected: What Now?

2009-08-24T15:33:00.005-04:00

Shock.

Disbelief.

So surreal.

I am trying to make sense of what happened last Friday at Johns Hopkins. Dr. Nguyen shared so much information with my mom and I, but I didn't expect to hear what he said.

Are you ready?

I don't have a muscle disease.

You read that right...I don't have a muscle disease. According to this Johns Hopkins neurologist, there is no evidence, whatsoever, that I have any muscle involvement of any kind.

What does he think I have?

Wegener's Granulomatosis. He's not 100 percent sure though. He says I am ill...definitely have an autoimmune disease. Definitely nerve involvement...vasculitis.

Wegener's Granulomatosis (which is a disease that was mentioned to me over four years ago, but was ruled out!) is an uncommon disease that affects about 1 in 20,000 to 1 in 30,000 people. Symptoms are due to inflammation that can affect many tissues in the body, including blood vessels (vasculitis). It is also considered a disease of abnormal immune function.

According to research, there is no cure, but early diagnosis and proper treatment can be effective and the disease can be brought into remission with complete absence of all signs of disease. (Glory be to God!!!)

Long-term remission can be induced and maintained with medications, close management and regular lab tests to help monitor the disease.

(sigh)

Sorry I can't help pick you up off the floor, but you can close your mouth now! I must find humor somewhere in all of this, right?

Next step? I have to go back down to Johns Hopkins to their Vasculitis Center. I plan on seeing the best of the best at the Center...but...I have to start from scratch. And I probably need a nerve biopsy. OUCH.

Okay...so...what do I do with all of these feelings, when all the pieces of my life are scattered on the floor?

How am I supposed to feel? What should I do when the tears won't come out of my eyes?

I know that I was strong enough to hear the news...but initially I wanted to run away as fast and as far as I can. I feel broken, but I must press on.

I trust in a higher spirit to guide me in the right direction.

The Time Has Finally Arrived!

2009-08-19T13:19:00.003-04:00

In just two days I will be seen by the best physicians in the world. I am heading down to the Johns Hopkins Myositis Center in Baltimore, Maryland for a battery of tests and then will be seen by one of their top neurologists.

I have been waiting five years for this day to come, and it has finally arrived.

Thanks to each and every one of you for your love and support. I promise to document my trip and give you a full report.

Until we meet again...God bless.

Summer on Long Island

2009-07-28T01:09:00.018-04:00

July is winding down really quickly, and once again I have let too much time pass between blog updates.

My main "excuse" is that our computer crashed. Not only did it crash, but we lost everything...photos, word docs, etc. Thank God I had saved my doctoral disseration material on an external drive, but everything else is gone forever.

To take our minds off our every day stressors, Sally and I spent a few hours at the Long Island Game Farm. It felt good to "be a kid again," even if it was just for a short time. We enjoyed seeing all of the animals, especially the lion, tigers, monkeys, lemurs and the giraffe. But the silliest moment of the day was when we walked into the petting zoo and laid down with the baby goats. Oh my goodness...we laughed so hard. What a wonderful day!

Since my last post, I have been working extremely hard in physical therapy. There are days that I can peddle the recumbant bike for 8 minutes, work the pilates machine and then come home and continue my exercises in our pool. But most days I "stumble" onto the table and let Dr. Tiffany "perform her magic." Ice packs, deep tissue massage, and then ice packs with Transcutaneous electrical nerve stimulation (TENS).

My body is definitely changing...but there is no doubt that I have a muscle disease. I have difficulty performing many everyday functions that are mindless moves to most. My recent bloodwork was insignificant--which is definitely a good sign. But the weakness and constant pain in specific body parts, neck, hips and lower back, are at times unbearable.

Since my last flare, I have alot of weakness in my right ankle...something that has baffled both my doctor and physical therapist. In fact, Dr. R stated that he won't be surprised if the specialists at Johns Hopkins diagnose me with yet another autoimmune disorder. One more month until my appointment!

Over the last few weeks I have been able to perform simple aquatic exercises on my "noodle." It gives me the freedom to move around with little or no stress on my muscles and joints. I feel free to be me whenever I get into the water. The impairment of joint mobility/performance seems to vanish when I am in paddling around!

Goldie and I in the pool, relaxing on a raft!

As I mentioned in my last post, I had the distinct honor of having one of my nautical photographs, 'Provincetown View," on display at the Fire Island Lighthouse Preservation Society's 2009 Annual Art Show. Sally, Jarrett, my friend Jules and I attended the Opening Reception on June 25th. I could not believe the crowds of people that came out to see the show that evening. It was extremely overwhelming.

It was one of the proudest moments of my life...to have one of my personal photographs hanging in one of the most beautiful lighthouses anywhere. It is one of my favorite places on earth!

Newsday writer Sylvia King-Cohen featured me in another edition of "Asking the Clergy" specifically for Father's Day. I am once again honored, and received wonderful comments from friends and former PR/marketing colleagues. Thank you, from the bottom of my heart!

Jarrett is away at camp and actually turned "16" last week. Wow...I cannot believe that my little boy is 16 and almost 5'6! He loves participating in teen travel camp each summer, and will actually be a counselor in training the last two weeks!

Our 2 year old Goldie recently had her summer haircut and looks gorgeous. I surely wish a Hollywood producer could see her photos...I am sure she'd be perfect starring in a new pet movie. Don't ya think???

Goldie...she ought to be in pictures!

My KIT (Keep in Touch) Myositis Support Group had our first "official" meeting on July 16 in Holbrook at a member's home. Every single person I have met through the group is a wonderful person with such mind-blowing stories. I thank God each and every day for the many blessings he has bestowed upon me and my family. You cannot ever imagine the nightmare's some of these brave people have endured with this illness.

The group elected me President, but I told them I would only lead as a Co-President...I cannot do it alone. I feel quite honored to take the helm. Our next meeting will be open to the public and will take place on Thursday, September 17 at the Sachem Library. This is just the beginning!

The family ventured out to NJ for a long weekend on the 18th, and we were able to hang out with my oldest friend from college...(not in age, but in years as friends!) Sharon, Frank, Sally and I shared a few laughs and great stories. Thanks for the memories, my friend!

Sally, me and Sharon...thumbs up!

That same long weekend, Sally, Mom and I took the ferry from Liberty State Park to Ellis Island. It was an amazing experience...from the initial approach to the island...the historical perspective of seeing the luggage of many of the immigrants who passed through those doors and hearing their stories...to actually touching both my grandfather's names (Sam Sheratsky and Lew Boyarsky) on the wall of honor.

Ellis Island

Before we left, we took the short ride over to the Statue of Liberty...and just leisurely strolled around the grounds. It had been years since I viewed Lady Libery up close and she is truly a beautiful sight.

The summer is flying by, but we finally made it to the beach this past weekend. I realized that we went as much as we could all winter, and hadn't gone at all until now! It was beautiful...simply breathtaking. I love summers on Long Island. Lobster dinners, Ralph's Ices or Mister Softee...and so much more!

Wow, it is so late...2 am...and I am wide awake. But I should probably sign off now and try to sleep. Tomorrow is another day.

By the way...I want to wish congratulations to two of our best friends...Julie and Peter...on the adoption of their new golden retriever puppy Oakley. He is Taylor's great, great nephew...and I cannot wait for Goldie to meet her new friend. She misses her big brother Dylan and her best friend Taylor. In just two weeks, Oakley's baby shots will be complete and he can finally come over! I promise to post pictures of their first meeting!

Until next time, keep the faith!

Life's Ups and Downs Continue

2009-06-21T14:44:00.006-04:00

It's Father's Day! And, it is raining outside...again...for the fourth week in a row. We get a few peaks of sunshine every now and then, but it is just a tease.

Believe it or not, there has only been one 80 degree day all month, and it rained every day except for three!!!

The meteorologists are promising that we will get through this coastal low in the next few days, but I wouldn't bank on it. Needless to say, I am in excruciating pain. And, what worries me the most, is my loss of memory.

Since the Rituxan treatment, I have regained some strength, but the pain never dissipated. Each and every day I must contend with constant pain...with absolutely no relief. It takes a very strong will to keep a smile on my face, but please understand that sometimes I just need to cry. Don't take my turning down an invitation personally...as am taking it one day at a time. I am trying my best to live life one day at a time.

I have restarted physical therapy, but most days are limited. I feel blessed to have found such a knowledgeable and compassionate physical therapist. She is very familiar with my disease and understands my plight.

Life has truly been spiritually and emotionally challenging since my last post. However, let me begin with the wonderful news!

Drum roll please....I have been accepted into the Johns Hopkins Myositis Center! I originally tried to see one of their physicians in 2005, but I was turned away. However, this time, they called me with the good news in just a week after sending in all of my medical records!

After my last rheumy visit, I honestly felt that we were at a standstill. Having the best doctors in the world review my case, those docs who only treat patients with myositis, is truly a blessing. Even though my appointment is two months away, I feel that I have another chance to beat this thing.

It was explained that I will undergo a full days testing, including electromyography, CT scans, muscle MRI and pulmonary function tests. To my surprise, my appointment was made with a neurologist instead of a rheumatologist. But, they are the experts!

Another wonderful piece of news is that one of my photographs was selected for exhibition in the Fire Island Lighthouse Preservation Society's 8th Annual Art Show, June 25 - July 19th! You have no idea how deeply touched I am to have one of my photos hanging in one of my favorite places in the entire world.

Newsday columnist Sylvia King-Cohen called and asked if I would answer another question for her "Asking The Clergy" column. Of course I said yes, and my answer to "Name Five Traits of a Good Father," was featured in the Father's Day edition of Newsday on June 20th!

***Note to self...I must continue to focus on experiencing good in my life--despite the constant pain from my illness--to be in a better position to bring good into the lives of others!

The family took a ride across the bridge to New Jersey earlier this month. We had the honor and privilege to see a good friend from my high school days star in one of my favorite shows, "La Cage aux Folles." Brian played the character, Albin/ZaZa, and his beautiful voice still remains a gift from God. I hadn't seen him perform since the 70s, and last saw him at our 30th high school reunion.

My darling Brian and I posing after the show!

Brian lost his beloved father this week, and I want to send him my deepest condolences. Keep the memories you shared close to your heart forever.

Over the last few weeks, there were several other losses, including Karen's brother Craig. He is now at peace and no longer suffering.

I also want to once again offer my condolences to my cousin Rena on the loss of her mom. It was just a year since your dad's passing. Take comfort in the fact that your mom and dad are now, once again, reunited. God bless you and the entire family.

It is with deep sorrow that I also send out love to Julie on the passing of her beloved golden retriever Taylor. In my last blog post, I sent prayers to "T" with hopes that he would stay with us a little longer. He put up a valiant fight, but in the end, God called him to Rainbow Bridge.

Good-bye sweet Taylor...until we meet again.

Words cannot express how we are all so deeply touched by his passing. My little Goldie is heartbroken and misses her best friend. I will never forget those special days spent walking the dirt paths at Southards Pond or along the waters edge at the beach last summer. They will forever be etched in my heart.

I will truly never know how many peoples lives are impacted by my personal feelings that are written in this blog. My mother-in-law Virginia surprised me last week with a painting of a blue jay. She had read one of my more recents entries on how I believe that Dad has come back to earth as a blue jay and visits me almost every day. The words moved her so deeply that she was inspired to paint a picture just for me. I proudly have it hanging in my office, and will cherish it forever.

Thank you Mom!

On that note, I ask each and everyone of you to remember to take a few moments each day to be aware of your eternal oneness with God.

I want to send forth, into the atmosphere, the love and blessings of God's presence to everyone...everywhere.

Happy Father's Day, Dad. I miss you each and every day, but especially on this, the fourth Father's Day without you. You are forever in my heart. I love you.

Feeling Blah on Yet Another Rainy Day

2009-05-05T15:20:00.007-04:00

I cannot believe how the days are just flying by. It is almost a full month since my last post...so a new one is long overdue.

My two chemotherapy sessions are complete, and thank goodness, they went smoothly. However, during my last treatment they sat an older woman next to me for a few hours that had a cough. Of course, by the time my Rituxan was finished, my chest was extremely heavy.

Within two days, I was violently coughing and bringing up dark green mucous. As the days progressed, my chest hurt so much that I was concerned that I had pneumonia. But thanks to the quick action of my doctors, the 'Z' pack, and a negative chest x-ray, it was only an upper respiratory infection.

I am going to speak with my insurance company about being isolated next time for my infusion, whether it be at home or another location. My immune system is being "shut down" during the Rituxan, and as witnessed this time, I am at risk of contracting anything that is in the room.

People are often dishonest about their health status when they come to the infusion center for their two-hour RA treatments, and it puts those of us who are there all day for more serious illnesses.

My doctor's visit went well two weeks after the infusion, and he is weaning me off the prednisone. And he prescribed physical therapy treatments in a few weeks. I only gained six pounds this time from the drug, but it has made me very uncomfortable and my face is once again moon-shaped. Once I begin physical therapy treatments, I should see the weight start to come off...or so I hope!

Now...for some wonderful news! On April 23rd, I had the privilege of meeting some very special people who have also been diagnosed and are living with a form of Myositis. My new friend, Trudi, organized the luncheon and I walked away with so many mixed emotions. Each one of them deeply touched me...with their stories, their individual and family struggles, and most importantly, their strong will to survive!

That evening, I felt an overwhelming sense of being part of something big! I always knew that my Myositis Family was there for me, via the internet. But now I actually have people here, on Long Island, who know how I feel and what I go through each and every day.

As a result of the contacts that were made that day, I called the national office of The Myositis Association (TMA) in Washington, DC and will officially start a Long Island Support Group with the help of Trudi, Tony and Melissa. TMA calls it the Keep In Touch (KIT) support group network. Our group will be able to connect Long Islanders with other myositis patients and their families. It will be amazing!

Another amazing thing happened recently as well! I was nominated for the Our Bodies Ourselves Women's Health Hero Award! What an honor!!!

I remember reading that book, cover to cover, over and over again as a young teenager. I would sit in the library for hours and read it...or look at it at the bookstore! It truly changed my life! So, to be nominated for such a prestigious award is truly humbling!

The contest works as follows: One winner will be chosen by the staff and Our Bodies Ourselves' Board of Directors, while the other winner will be determined by the public through a ratings system located on the contest website. Public voting ends this Friday, May 8, 2009 and the entry that receives the highest overall ranking will receive the Audience Choice Award.

Please, if you will, please ask your friends, family and co-workers to rate my entry. (Entry dated April 15!)

http://www.ourbodiesourblog.org/blog/category/womens-health-heroes

Thank you, thank you, thank you!

Life has truly been a struggle over the last few months, despite my attempts at making it as "normal" as possible. My health, even with the two chemotherapy infusions, is still unstable. I am attempting to get out a bit, but the torrential rainfall is making it difficult.

NY has not seen the sun in days, and the meteorologists are forecasting precipitation for the rest of this week. Ugh! Hopefully the sun will shine bright for Mother's Day this weekend. My mom and brother are driving out for the day, and I cannot wait!!!

Before I close, I want to comment briefly on the reaction I received to my last blog. The words always come directly from my heart, and while it is true that so many people in my life have disappeared, others have stepped up to the plate and have shown what the meaning of friendship is all about.

Right after I published the blog, the phone rang for a few days. It was right after I received my infusion, thus I was unable to answer the phone and speak to all of you. But I want to thank each one of you for reaching out and showing that you care.

Please...please keep calling. Remember, those of us with a chronic illness feel totally isolated from the outside world. I was homebound for almost two months during this last flair, and the silence in the house was, quite often, too much for me to bear.

I hope that, as the weather warms up and I begin physical therapy, that my body gets stronger and stronger with each passing day. In the meantime, all of my medical records have been sent to the Johns Hopkins Myositis Center in Baltimore, Maryland. Once their committee reviews everything, they promised to be in touch.

So again...I wait. But I am optimistic that brighter days are right around the corner!

I want to send a special prayer to my little Goldie's best friend, Taylor, who is battling a serious illness. May a white protective light of God's presence surround your body with protection from negative outer energy influences. Keep fighting, sweet Taylor, for we all love you!

Goldie (left) and her best friend Taylor

Let me end here with a one of my favorite quotes by Albert Einstein: "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."

God bless you...until next time!

Hopeful For Tomorrow

2009-04-08T14:30:00.017-04:00

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."

I am scared.

There. I said it out loud. I am scared!

Let me back up a bit and fill in the blanks. I finally had a Rituxan infusion treatment on March 26th with little or no drama. The headaches were mild and the side-effects were minimal.

That being said, tomorrow is the last infusion and to date I have barely left the comfort of my bed. My legs feel like lead weights with 20 lb. bricks attached. My body is extremely weak and there is an overall sense of malaise.

In all honesty, I have kept positive through everything...but lately I am experiencing a sense of uneasiness. Uncertainty. Something more?

Instead of sitting back and just waiting, I am becoming more proactive and will not just wait for the other shoe to drop. After my chemotherapy tomorrow, I need to rest and gain back my strength. I have my next rheumy appointment on April 21st. At that time, we will discuss my latest lab results and my overall health status.

My big decision...I want to go to The Myositis Center at Johns Hopkins as soon as I can. I am going to ask Dr. R to send them a copy of all of my records, and I want to explore any and all options for my future medical care.

We are skating on thin ice...exploring unknown territory...but this is MY LIFE. And if this Rituxan treatment is not working, and in my heart I honestly don't think it is, then I need to find another option. And not when it is too late.

I decided to visit my beloved Fire Island Lighthouse the day before treatment, and I am so glad I did. The air was brisk, but the sky was clear and blue.

Nothing brings me closer to God than meditating near the ocean underneath the beacon of light. With all that I am...I recognized my oneness with God, working within me, to maintain my independence...and visualize a white protective light of God's presence, surrounding my mind and body...protecting me from outer energy influences.

In the meantime, my birthday and our first anniversary came and went...very uneventful. When I am stronger, Sally and I will celebrate in a special way...but until then, everything was very low key.

My brother and two nephews drove out for Sunday brunch at Captain Bill's in Bay Shore. I wasn't much company, but it warmed my heart to see everyone. Of course, we sat looking out at the water, but it rained! Oh well!

Scott, Shane, Bev and Craig

I cannot believe that it is a year since our commitment ceremony! Time is flying by much too quickly. I had a beautiful bouquet of spring flowers delivered to Sally's office as a surprise, and she had a local florist deliver a spectacular floral arrangement to our home. Great minds! I promised her that when I am feeling stronger we will go out and have a proper celebration. I cannot wait.

A few days ago, I had several "visitors" outside my bedroom window. Since my father's passing, we all believe that he comes around to check on us from time to time...and has taken the form of a blue jay. Don't ask me why...but I am certain that it is him. The blue jay is always here when I need him...and there is always only one. We have hundreds of others birds all the time, including pairs of cardinals. But never more than one blue jay.

When I was so sad the other day, I heard a lot of commotion outside my bedroom window. It took me a few minutes to roll out of bed, but I am so glad that I did. I pulled the string on my blinds and saw EIGHT blue jays singing in all of their glory! I thought I was imagining the whole thing, so I yelled for Sally to come and see. And...even to her surprise and delightment, there were eight blue jays looking right at us! What an amazing present!

This past weekend, our friend Peter helped Sally take down the "deader than dead" tree in our backyard. Two years ago, it started to lose all the leaves and this winter, with each windstorm, started to come down. My fear was that it would end up in the pool!

Watching the two of them was quite amusing...but they got the job done. And what a fine job they did! We will enjoy the seasoned firewood in our chiminea this summer and our fireplace next fall. Thank you Peter!!! xo

On another note, I received a glorious email this week. I have been invited to a luncheon to meet several other people in the area who also have a form of myositis! Isn't that amazing?! I can finally put faces to a name...and we can talk and talk and talk about the issues that only we, as fighters of this ugly disease, can share. I truly am nervous, but excited at the same time! I will keep you posted!

Now...more than ever, I feel totally alone. I awake every morning with renewed spirit, but each day is a repetition of the previous monotony. People have stopped calling. I don't know why...when you need people the most...to lean on...to listen...to help...they disappear.

It is important to understand that people with a chronic illness struggle every day with pain, weakness and strong emotions. Someone like me...who was always the "rock," needs to lean on others for the first time in my life. I cannot do this alone, and my family needs the support as well.

My life will NEVER be what I dreamt it would be. NEVER. Just getting up to take a shower takes every bit of energy I have. I haven't been able to drive for over a month! And try to deal with the fact that I will never be able to do the simple things that we all take for granted ever again! I can't even lift a milk container or open a can of tuna. And don't get me started about the number of pills I have to take each day...one when I open my eyes...then I have to wait an hour...then take another one with food, before 9am...and...what about the sleepless nights, despite the 10 mg of Ambien? Oy!

This is why I never complain...unless you ask. And if you ask, please...listen to me. Really listen. Sitting alone, each and every day, plays tricks on the mind.

The deafening silence. I want to scream! But I know that God will show me the way to a brighter tomorrow. I have to remain strong. I JUST HAVE TO.

Someone once said to keep your face to the sunshine, and you cannot see the shadow. I promise...I will.

"I do not identify my identity with any temporary negative experience--as I am NOT anything temporary--but I AM of the eternal positiveness and universal god consciousness in which negative darkness ceases to be."

This morning, through all of my uncertainty and questions, God's love and beauty touched me. Let me share my story...

We are having a new patio built in our yard because our old wood deck has totally fallen apart. Needless to say, we didn't expect this major expense, but there was no choice. Since I spend months enjoying our yard and pool, safety is number one! (I think that sounded like a commercial!!)

After speaking to numerous contractors, we hired a local guy to demolish and cart away our old rotted wood and build a cement patio. Of course, it isn't all that easy...there are complications...but we figured it all out.

This morning, three men arrived around 8:30 to continue the demolition and leveling that one man began the day before. All of a sudden, my little Goldie jumped on the bed and laid down on top of me. She looked toward the back window and starting growling intensely.

Very calmly, I asked her to get down and that all would be alright. No matter what I said, Goldie stood her ground and refused to leave my side. As the noise level outside became louder, my little golden moved closer and closer to me. She snuggled her wet nose in my ear and looked into my eyes with deep concern.

I realized that she was protecting me from whatever was going on outside. For the last few weeks, Goldie has followed me to the bathroom, to the kitchen, to my office and back to bed. No matter where she was...whenever I stepped away from my comfort zone, she was there. Not in the way...not tripping me...beside me.

Goldie's love and concern this morning truly showed me what unconditional love is all about. My little girl knew that the noise was not normal, and that by laying across my body, she would protect me from harm. It is a love that is so deep...so strong...nothing can ever come between us. Ever.

On that note, I am going to end here. I am extremely weak and it is hard for me to type.

Please keep my family and I in your prayers...as I keep you in mine.

Waiting For the Phone To Ring

2009-03-17T07:46:00.009-04:00

Happy St. Patrick's Day!

The first day of spring is only three days away. This morning, I awoke to a hint of sunlight peaking under my bedroom door jam, and the sound of seagulls circling around the house.

I thought it was quite unusual to hear so many seagulls, so I slowly made my way to the large bay window in the livingroom. Our cat, Gizmo, was in deep concentration as I observed close to a dozen seagulls confront each other over a few scraps of old bread. The biggest, toughest bird always won, with the others hopping back a step or two, avoiding his flapping wings and potential scrape from his beak.

These familiar creatures brought a much needed smile to my face, as the thought of spending warmer days walking along the beach filled my head. I needed a diversion, and today...I got one!

For the last few weeks, my body has begun to break down. It has been exactly ten months since my last Rituxan treatment, and the doctors had hoped that I could stay in "medically induced remission" for at least one year. But it just ain't happening.

Since mid-February, I started to feel extremely tired and weak, but contributed it to the craziness of my daily life. Between doctor appointments, motherhood, and rehearsing for my role in "The Vagina Monologues," my symptoms did not concern me. Besides, Dr. Spiera's visit in January was extremely optimistic. He was pleased with my progress, lab results and overall condition. In fact, he didn't see any reason why I couldn't take a trip this year!

But something changed. Almost in an instant. I noticed that I could not hold onto small objects. I would drop my keys just about every time I tried to open the door. I was becoming extremely forgetful and clumsy.

I continued my daily routines as best as I could, including a few extracurricular activities. I had the honor of being cast in VDAY 2009 Bay Shore's "The Vagina Monologues" to benefit the anti-violence project here on Long Island. I was thrilled to read award-winning playwright and activist Eve Ensler's personal story entitled, "I Was There In The Room," the role that Jane Fonda enacted on Broadway several years ago.

It is very important to me, personally, to eradicate violence against women and girls once and for all. By participating with my cast at the Boulton Center, we were able to honor and give voice to the women and girls around the world who have survived the many faces of violence. We must stop rape, acid burning, female genital mutilation, sex trafficking, incest, keep local shelters open and give women back their voices--voices that were once silenced by violence. Together...we can empower!

Here is my performance: http://www.youtube.com/watch?v=viFjN_gTe7A

Throughout the month, we celebrated Sally's birthday, Valentine's Day and life in general! With small hints of spring in the air, my family is committed to trying to spend at least a few hours over the weekend walking our pup at the beach. "Family time!" Ahhh...what a concept! There is nothing like strolling along the waters edge, hearing the crash of the waves along the sand and watching dogs, of all shapes and sizes, running together with a ball. My heart fills to capacity with love when I see my little Goldie frolicking with other puppies and enjoying life!

I also had the honor of being asked to be a guest speaker at a Pride in the Pulpit event in Sayville. Pride in the Pulpit is a program of the Empire State Pride Agenda Foundation and is a faith-based network of clergy and laypeople representing hundreds of congregations and dozens of faith traditions across New York that advocates for equality and justice for LGBT people and their families.

As a minister and a newly "legally married" woman, I was asked to share my story about the difficulties faced by same-sex couples in adoption, insurance and life in general. The positive feedback I personally received was inspiring to me, and I feel blessed that I had the opportunity to participate.

Over the last month or two, I have also had to face and struggle with loss. Some truly unexpected, others by personal choice.

Either way, any form of loss is a significant life change that can affect us in innumerable ways. We have to find the strength to move forward, even if our heart is preventing us from taking that first baby step.

Dotty Ruprecht passed away on February 20th...and proved to me, once again, that God does work miracles. You see, one of my closest friend's, Joan, had just lost her dad only a few years ago, and now had to face the passing of her mom.

From the stories that Joan shared with me over our 14 plus year friendship, and from the time I spent with the two of them, her parents, Freddie and Dottie, shared a love that transcended both heaven and earth. Fred visited Dottie every day in the nursing home, year after year, even after his ALS diagnosis. Dottie's alzheimer's disease prevented her from truly facing the death of her beloved husband. But God works in mysterious ways! Despite being placed into Hospice Care, she held on until Freddie's birthday, and passed quietly into the next life as their anniversary song played softly in the background. When the last note finished, she took her last breath. They are now together, forever, in God's heavenly kingdom.

A NJ childhood friend and neighbor passed away, at age 50, from MS and cancer. Carlin and I grew up on the same street since preschool, sharing the same friends right up until high school. Even after I left New Jersey, I would hear the stories of her diagnosis and courageous struggle to live life to the fullest. Unfortunately, her body was riddled with cancer and she was given six months. Less than a month later, Carlin passed on.

Despite my failing health, I drove to NJ to attend the memorial service. I hadn't seen Carlin's mom, Mrs. Heerschap, in over 25 years and I felt that I needed to pay my respects. Seeing her and looking at the photo montage brought my health status down to a new level. I had to fight...even harder...because life is much too short.

Driving my car across state lines...driving my car in general at this point...is a very difficult task. My body has gotten weaker and the pain has been unbearable. My visit last week to my rheumy confirmed my suspicions...IT IS TIME FOR CHEMO.

Each day that I awake, the pain is a constant reminder that I am very ill. No matter how I continue to live each day to the fullest and push away the facts in the back of my head, I have polymyositis.

As Mary J. Blige sings so beautifully: "Sometimes I wish that I can stand here and fade away...so that no one could see the tears running down my face." That is exactly how I have been feeling lately. I am a strong woman, and I don't want anyone to see my weakness. But right now I can no longer hide it.

Within 24-hours of my doctor visit, I was contacted by the Genetech Foundation who informed me that I was approved to receive Rituxan through their Foundation. Their commitment to people with chronic illness, like myself, is amazing. Now the wait begins for an actual appointment.

The freakin' red-tape is absurd. In order to actually "receive" the treatment in the infusion center, an outside agency has to obtain benefit verification. It has been a week, and NOTHING. In the meantime, my health is failing fast and the pain is so intense that I am popping pain medication every six hours, between all my other meds.

Oh, and yes...I am back on the dreaded prednisone. Aargh.

I had an argument with someone in my doctor's office, and even Sally went to bat for me. I was told I had to "wait" for verification...I just can't come into the office and have the necessary treatment. Very, very rude and cold. I guess it doesn't matter that my health is spiraling each and every day...and that the longer I don't receive the treatment, the worse my health becomes. If it was their mom, sister, niece or best friend...would their answers be different? Makes you wonder, huh?

So...here I wait. And wait. And wait for the phone to ring. I am still waiting.

I also received upsetting news regarding my cholesterol levels. The numbers have not changed, despite my diet over the last six months. It has reached 236 and my LDL is now 165. The problem is that if I begin a statin, my disease will worsen.

So at this point, I have been told to wait until my treatment is over and we'll address this issue then. I will have to go on cholesterol lowering meds, no matter what the consequences...but first things first. It is obviously all genetic...and there is nothing I can do about it.

In the middle of everything, Long Island was hit with a major snowfall! Over 15 inches of snow blanketed our neighborhood, but thankfully it didn't last too long. Jarrett finally had his snow day and Goldie had her chance to bounce around in the snowdrifts! The little things that mean so much!!!

Sorry for all the downers today...I know that my blog is good therapy for me and I needed to vent. When I began writing today, my head was filled with thoughts of brighter tomorrows. And I know deep in my soul that God is looking out for me and will get me through this tough fight.

If you are lucky enough to find a way of life you love, you have to find the courage to live it. And I will.

I promise!

We Both Said "I Do" & Other Stuff

2009-02-09T14:37:00.013-05:00

The days are passing by so quickly. It is the second week in February and life keeps throwing curveballs my way.

I have come to believe that challenges are opportunities to find out who we really are. No matter how prepared we think we are for life's challenges--despite how big or small--I constantly am amazed by the strength of the human spirit.

Every day I take a few moments to reflect on days past and to visualize the present moment. Gods love and presence showers me with strength and renews my belief that he/she is working within me--through both the highs and lows--to find inner peace and everlasting completeness.

I recognize that life will continue to be challenging...and that no matter what...I will never be alone. For God is always with me.

Mother Nature has been quite the comedian these last few weeks. The sun has been shining over New York for days on end, but it is frigid. I went to my NYC appointment with Dr. Spiera and he seemed pleased with my progress. Even though I am extremely exhausted and have discomfort, Dr. Spiera feels that it is viral in nature and it is just taking me a bit longer to recuperate from my illness last month. Chemotherapy is not required at this time.

Long Island has been hit with a few snowstorms, but they haven't been too extreme. Except on January 28th...the day that Sally and I drove to Greenwich Connecticut to get married!

Despite the blizzard-like conditions, Mom, Sally and I piled into our friend's truck and forged across state lines to legalize our union. The icy road conditions left most of Long Island crawling on major highways, but once we crossed into Connecticut, it was smooth sailing. In fact, the snow turned to rain and made traveling less hazardous!

From the bottom of my heart, I send love and thanks to our good friends Peter and Julie for getting us to the justice of the peace on time! We were actually early!

The Greenwich Town Hall ceremony, in spite of its brevity, was beautiful and quite moving. There was not a dry eye in the room!

I never thought I would live to see the day that I could LEGALLY marry the woman of my dreams. But here we are: The Reverend Beverly and Mrs. Sally Boyarsky! Forever and ever!

Through all the frosty nights and wintry days, yesterday we were blessed with a hint of spring. The temperature rose to 60 degrees, so we headed to the beach...Sally, Jarrett, Goldie and I!

The few hours spent at Gilgo Beach were filled with giggles, smiles and sunshine. As soon as we let go of her leash, Goldie headed straight for the water, despite the frigid temperature! All she wanted to do was fetch her ball and lay down in the surf! What a glorious day it was!

Over the last several weeks I have been extremely distracted and have not been able to focus on my schoolwork. Despite my good intentions, I have felt quite sad at times and try to look ahead towards the upcoming warmer weather and happier times.

Our community lost a vibrant young woman recently, and her wake has touched me deeper than I could ever imagine. Rosie was a beautiful woman, inside and out, and she left this life much too soon. My heart aches for her partner of 22 years...and pray that Eva finds the strength to cope with such a senseless loss.

One of my best friends is also dealing with sadness...my sweet Joanie has to face the downward spiral of her Mom's poor health. She lost her Dad not long ago, but God knows that her parents couldn't be apart for too much longer. May she find comfort and strength in knowing that her Mom will soon be at peace.

As a minister, I understand that we all must face death...as it is part of life. But it is never easy...no matter how young or old our loved one might be. We must learn to enjoy life each and every day, and thank God for our many blessings.

We also must remember to tell our family and friends how much we love them, as often as possible, and never take them for granted.

Take a moment to breathe in the glory of today. Enjoy your life. Cherish it...and know that we are all children of God.

For today...act as though it is the first day of the rest of your life!

The Story of My Life!

2009-01-12T12:11:00.002-05:00

Happy New Year!

I cannot believe it is 2009. I have been ill for more than four years. But with each passing day, I learn something new about myself and it renews my spirit.

Over a month ago, I was contacted by a reporter at "Story of My Life," a website dedicated to documenting the lives of every day people. Tamar Burris had read my blog and wanted to relay my story with a little more depth.

I humbly offer my gratitude to Ms. Burris and her editors, and hope that you en joy it!

***Footnote: I cannot copy the photos into the body of my blog, but you can see the entire article by clicking on:
http://www.storyofmylife.com/user/user_suzy_story_view.aspx?UserID=153540&StoryId=3177&CategoryId=1768

"Living and Loving With Chronic Pain"

Published on: Jan 08, 2009

Ouch! Beverly Boyarsky felt a sharp stab in her ankle as she climbed into the front passenger seat of her car in August 2003. Peering down, she saw an unidentifiable large, black insect crawling up her leg. Without hesitation she squashed it! Although the bite was red and sore, Beverly thought little of it until a few days later. Suffering from flu-like symptoms, red spots began popping out all over her body, including on the palms of her hands. “My internist was concerned that I had contracted Rocky Mountain spotted fever,” said Beverly. “So she ran a blood test immediately. No medication was prescribed at that time because the wrong antibiotic could prove disastrous.”

Three weeks passed and the blood tests returned negative. By this time, Beverly felt better and she and her internist assumed it had just been a virus. But, time would prove them wrong. Soon, this strong successful businesswoman would become almost wholly dependent on others.

A few months went by and Beverly began feeling weak. Her back and hips ached. A public affairs director at a hospital, she saw every specialist she could and underwent every test available. But all results were inconclusive. At 46, Beverly started calling in sick for the first time in her life. “I had doctors telling me that the pain and sickness I was feeling was all in my head. ‘Stress’ and ‘depression’ are the words that the specialists used. ‘Too many hours at work!’ NOT! Being a serious athlete my entire life, I knew there was something wrong with my body.”

After seeing a specialist in New York City, Beverly was diagnosed with fibromyalgia. The doctor showed Beverly how to give herself daily B-12 shots and referred her to an endocrinologist. Despite the treatments, Beverly continued getting weaker and weaker. Her body was breaking down, driving the 45 minutes to work every day became a major ordeal. “By mid-September 2004, I knew something was very wrong. My memory was gone, I could barely use my arms at the computer or while driving, and I just wasn’t functioning. My secretary came into my office, closed the door, and said she was worried. Two days later, my VP told me to take a few days off and find out what was going on.”

Beverly left work on September 27, figuring she’d take a few weeks off to rest and recuperate. She never returned to work again. Now bedridden and unable to use her hands, Beverly fell into a deep state of depression. Through it all, her beloved golden retriever was diagnosed with mast cell tumors and her father’s health started rapidly declining. What’s more, her financial situation took a turn for the worse. She’d been let go from her job without disability pay. “I had to hire an attorney to fight for disability payments. It wasn’t bad enough that I was diagnosed with an incurable disease and I had absolutely no money coming in for over a year. Now I no longer had health insurance! Or life insurance, for that matter.”

After undergoing several MRIs, a spinal tap, a muscle biopsy, and an EMG, it was actually the countless, small blood tests that gave Beverly a conclusive name for her disease. Her doctors came up with two possibilities—Polymyositis or Mixed Connective Tissue Disease. Either way, she was dealing with an autoimmune disease. Her body’s immune system was essentially attacking its own organs. Although the diagnosis terrified her, now at least Beverly could conduct her own research, which she did. She quickly learned three important things: The cause of her illness is unclear; it is unlikely there will be a cure until the cause is identified, and every drug she took would be experimental. “I felt both relieved and frightened at the same time. After looking up the disease and finding little or no information, I immediately knew I had a long road ahead of me.”

Despite her fears, Beverly also found solace and friendship on the Web. So many friends and acquaintances had drifted away when Beverly fell ill. But, in researching the Myositis Association and online support groups, Beverly finally realized that she was never again going to be alone with this disease. And, she started seeing that it was time to shed her former self. “I wasn’t the same person…on the outside…and asked myself what kind of partner, mom, daughter, sister, godmother, aunt could I be? I could no longer contribute to our life, financially or emotionally.”

Life as Beverly knew it changed completely. Through intensive soul-searching and therapy, Beverly chose to embrace her new self, ultimately coming to terms with the idea that she—a fiercely independent woman—is now limited in some ways. But, as it turns out, not in every way! Letting go of her illness for a brief moment, Beverly auditioned as a singer with a Long Island rock ‘n roll band. Not telling the band about her disease, she let her voice speak for itself and got the job! Checkered Past is now like family, supporting Beverly through the rough spots and putting the band on hold when she cannot perform.

And, while she can no longer work in corporate America, Beverly also came to understand that she still has something to give to mankind. She became an ordained metaphysical minister and has formed her own ministry, Beacon of Light (www.beaconoflightministry.com). Her new dream is to minister to people with chronic diseases and their loved ones. Beverly also chronicles her experience with Myositis on a personal blog (http://mylifewithmctd.blogspot.com/), where she’s touched thousands of people across the globe, and received positive feedback with her entries.

One thing that her illness has taught her is that life is too short not to live your dreams. On that note too, her home front has changed a little bit since Beverly’s disease came to light. Dealing with the loss of her father and her beloved golden retriever, Beverly now has an “official” support team—Sally, her partner of nine years and Sally’s son, Jarrett, who Beverly adopted following their commitment ceremony in April 2008.

When asked to sum up her experience and what she sees for her future, Beverly answered: “I don’t know what tomorrow will bring. Chronic illness forces a once independent person, like myself, to rely on others. I no longer take anything or anyone for granted. Things could be worse. So, I celebrate and thank God for each day that I wake. And I promise that I will try to live my life one day at a time…to the fullest!”

Thank you Reverend Beverly, for sharing your Story with us.
~~~
Our Stories and pictures are the sole copyright of their Authors and may not be reprinted or used without their permission.© 2009 by Tamar Burris Story of My Life®

Farewell Sweet Boy: Until We Meet Again

2008-12-22T22:59:00.010-05:00

My heart is breaking. My rescued golden retriever angel, Dylan, crossed over to Rainbow Bridge this evening around 9 pm.

We rescued 3 year old Dylan through Long Island Golden Retriever Rescue in 2001, from a family in Oceanside who could no longer care for him. When we arrived to meet him that first day, Dylan was gated in the kichen, did not know how to climb stairs or how to relieve himself on the grass. In fact when he got him home, he didn't even know how to bark!

Within a few years, he became quite ill and was diagnosed with mast cell tumor cancer. What were the chances of having three golden retrievers, from different breeders, contract a deadly form of cancer within a few years of each other? I did the "right thing" and had the tumors removed and the body treated with chemotherapy.

Thank you for being my hero, Dylan. Despite your cancer diagnosis four years ago, you stayed strong and helped me through my illness. You stood on the side of my bed and helped me get up each morning. You patiently waited at the steps so I could take it one at a time. And I knew better than to go into the pool without you by my side. You walked me to the pool's edge and watched my every movement until it was time to come out. My sweet, sweet boy. And if I swam towards the deep end, you barked until I turned around!

God brought you to us, and now you have returned to God's holy kingdom. I am positive that Prince, Casey and Kandie met you at Rainbow's Bridge...and I bet that Grandpa Bill was waiting for you with open arms.

Rest peacefully, my angel, for you fought a valiant battle all of these years. The doctor's gave you a year to live in 2004 and you beat the odds. In my heart I know you did that for me...because without you by my side...I would have been home alone during the worst phase of my illness.

You are my hero...my best friend and companion. You brought joy and unconditional love to our family. Even until the very last moment of your life, you were unselfish. You gave us a clear sign that it was time to go.

Know that your little golden sister, Goldie, has big paws to fill...but I am confident that you taught her well. And your little feline brother, Gizmo, is lost without you. He is wandering around the house looking for you. Perhaps you can send them both a sign that you are okay.

Goldie kissing her big brother, Dylan

Until we meet again at Rainbow Bridge, sleep well. For your love and devotion will stay in the hearts of our our family and friends, and those that you have touched over the years, forever. For only golden retriever's leave golden pawprints on your heart.

I love you.

Rainbow Bridge

Just this side of heaven is a place called Rainbow Bridge.

When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge.

There are meadows and hills for all of our special friends so they can run and play together.

There is plenty of food, water and sunshine, and our friends are warm and comfortable.

All the animals who had been ill and old are restored to health and vigor.

Those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by.

The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind.

They all run and play together, but the day comes when one suddenly stops and looks into the distance.

His bright eyes are intent. His eager body quivers. Suddenly he begins to run from the group, flying over the green grass, his legs carrying him faster and faster.

You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again.

The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.

Then you cross Rainbow Bridge together....
Author unknown...

A Chilly December Day

2008-12-10T08:57:00.008-05:00

As I sit at my computer, I hear the familiar honking sound of geese flying overhead. Each morning and again in the early evening, a large flock of Canadian geese take the same route over our house as part of their daily ritual.

Besides the geese, there are usually two to three seagulls that also hang around, but today they are nowhere in site. It is extremely gray and there is a definite chill in the air. Heavy rain is in the forecast, so I think it is best to stay put.

I have been fighting a horrible upper respiratory infection for several weeks, and I plan on winning this one! Unfortunately, this time of year I am supposed to avoid contact with all forms of human life. But that just isn't possible. I made a promise to myself not to "kiss" anyone and try to avoid people with colds or ill-health. I will make a conscientious effort to do the right thing.

My heart is heavy today...and it is honestly affecting me. My good friend lost his Dad on Friday and today is his funeral. With all my heart, I wanted to be there, but my health will not allow it.

Frank F. Fincken Jr. was a teacher in the Clifton school system in New Jersey while I was growing up. He had a fantastic sense of humor and because he also was in charge of the AV/Media Dept., like my Dad was in the New Milford school system, we immediately connected. I never had him as a teacher personally, but I always knew Mr. F was there if I ever needed someone to talk to.

Little did I know that, years later, my best friend from college would marry Mr. Fincken's son, Frank III! It truly is a small world.

My deepest condolences to the Fincken family...keep the wonderful memories you have shared together as a family close to your heart.

Aside from my cold, I haven't felt quite right since the Reclast infusion. At times, my legs and arms just don't work. It doesn't matter if I am lying in bed or driving the car...they have a mind of their own. I get a sharp pain in the joints and bam...they go limp.

Luckily, this reaction doesn't happen at the same time. It is usually either the arms OR legs, not both. Thank goodness for small favors, eh?

I had my regular visit with my rheumy yesterday, and he didn't seem too concerned at the moment. Last month's bloodwork was status quo, but he doesn't know if my pain and symptoms are a result of my disease process or an after-effect of the Reclast. He ran several more tests, so we will wait for the results.

In the meantime, I was given a script to start physical therapy as soon as I can set it up. I need the motivation to begin exercising again, and this is the ticket!

Honestly, my life just seems to be in limbo right now. I can't say I am depressed, just not really happy. I am sort of "stuck" right now. I am not even motivated to continue with my schooling, but I must. I am so close to completion that stopping now would be just plain dumb.

I did receive notification several weeks ago that the UOM thesis review committee has granted me a Master's degree in Metaphysical Science. It took so many months to write my thesis entitled, "REINCARNATION: A JOURNEY OF ONE’S SOUL." I am so proud of myself and know, deep in my heart, that I can finish my doctoral dissertation if I set my mind to it.

Over the last few weeks, I have been part of many wonderful celebrations. My great aunt Bert turned 90, and my mom had an intimate party for her at a local restaurant in New Jersey. Friends, family and former colleagues filled the afternoon with stories and laughter.

(Pictured: Aunt Bert; My beautiful Mom Bernie and Great Aunt Bert)

Sally and I hosted 11 people for dinner at our home for Thanksgiving this year. It was only the second time that I personally cooked for this holiday, and it truly was spectacular. Loving friends and family, great food and lots of live music!!!

The turkey came out of the oven picture perfect, but it was a lot of work. I proved, once again, that despite my illness...I can overcome!!!

(Pictured: Yes that's me as the chef with my perfect bird!; A proud aunt with my handsome godson Craig.)

I had the blessed opportunity to attend an all day Reiki workshop. Since I am striving to become a true natural healer, this was another chance to fulfill another item on my list.

Becoming attuned to the Usui system of natural healing in the Usui Shiki Ryoho tradition was an extremely spiritual experience. I pray that I am given many opportunities to share my new knowledge with patients in need.

Until next time...Namaste'!

"The light in me honors the light in you."

A Letter To People Without Chronic Pain

2008-11-18T14:21:00.006-05:00

I am doing something a little different today. I am publishing someone's elses letter because I could have not written these words with any more eloquence or passion.

I came across this anonymous letter out in "Myositis cyberspace," and it touched me very deeply. Even though the author is unknown, I want to thank them from the bottom of my heart for expressing what many of us--who suffer from chronic illness--feel every single day.

LETTER TO PEOPLE WITHOUT CHRONIC PAIN

"Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand... these are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me - stuck inside this body. I still worry about my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy." When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. Please repeat the above paragraph substituting "sitting, walking, thinking, concentrating, being sociable," and so on. It applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room.

Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally.

If you are able, please try to always remember how very lucky you are - to be physically able to do all of the things that you can do. Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time.

Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct. If I were capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language.

Also, chronic pain may cause secondary depression. Wouldn't you get depressed and down if you were hurting constantly for months or years? But it is not caused by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. That just isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying.

If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal.

I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability.

I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life.

You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able. I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot."

--Anonymous

A Reclast Nightmare

2008-11-11T12:09:00.008-05:00

Today is Veteran's Day...a day to honor and remember all veterans who have sacrificed and fought (and continue to fight) for our country's freedom.

It was exactly 90 years ago that a defeated Germany signed the armistice ending four years of the bloodiest war in human history--World War I. A day that changed history!

To all of the brave men and women serving in Iraq, Afghanistan and other parts of the globe, I salute you. May God continue to watch over you.

Do you realize how blessed we are to be living in the United States of America? For the first time in our nation's history, American's have elected an African American to serve as our 44th president.

Obama’s election is a giant victory in the long struggle against an earlier generations long legacy of exclusion and hate. Finally, it is apparent that all people are created equal!

On the healthfront, things are quite bleak at the moment. I went to the Infusion Center last Wednesday to receive Reclast. a once-a-year treatment for postmenopausal osteoporosis.

Reclast is a type of medicine called a bisphosphonate which works to increase bone density. Because it is an intravenous (IV) treatment, my docs thought it would be good for me since it would bypass the digestive system. However, no one knew that I would have such an adverse reaction.

The infusion nurse told me that the most common side effects are flu-like symptoms, fever, muscle or joint pain and headaches. So, I drank several glasses of water and took Tylenol. In addition, she said that I should drink Gatorade to replace the electrolytes that might get eliminated and cause muscle pain.

Of course I experienced ALL of the symptoms within a few hours, but no one could have prepared me for what was going to happen the next day. As I was laying in bed, my entire body started to tremble. Within minutes, both legs started to tingle and then went completely numb. Every few minutes I had a stabbing pain at the bottom of my left foot.

At the same time, I felt a strange sensation throughout my body. It is kind of hard to put into words. My hands started to spasm and lock shut. I could not open them.

As time went on, the my muscle pain intensified. I experienced the most incapacitationg bone, joint and muscle pain ever. My temperature started to spike and all I could do was cry.

It brought back upsetting memories of my life at the very beginning of my diagnosis. Did this new drug nullify everything and bring me out of remission? This just couldn't be happening to me.

The fever continued the rest of the week, into the weekend, and the pain and weakness progressed. I called my physician's emergency number and spoke with the doctor on-call. Unfortunately, he had no answers. He just suspected that something else was causing the issues...perhaps a virus.

Now, I know for certain that I do not have a cold or the flu. I have no chest congestion, coughing or sinus issues. I was fine until the Reclast infusion.

According to the Novartis website for professionals, my reaction is extremely rare. And get this, the symptoms can last for two weeks. TWO FREAKIN' WEEKS! Why didn't someone tell me??? WHY???

On Monday morning I put in a formal complaint with the FDA and also with the "Clinical Safety and Data Collection Team" at Novartis. I did speak to Dr. Rumore, as well, who assured me that there is no scientific evidence that the treatment will exacerbate my disease. That is my biggest fear at this point...that I am back to square one.

As of today, I am still running a fever but my pain has subsided to a degree. I have doubled up on my calcium in-take and will continue to drink Gatorade. If things don't improve in a few more days, I will call the doctor and he may have to hospitalize me and administer an IV of electrolytes.

I don't want to go anywhere near a hospital now...it is flu season. That would be a death sentence, in my opinion.

In the meantime, my echocardiogram the week before was normal and Dr. Rumore explained that my previous thoughts were on target about taking a statin for my high cholesterol. Because I have a muscle disease, it could be a potential problem. He suggested regular exercise (when I am back to myself) and continue the diet. The doc also mentioned drinking a glass of red wine each night. Now...that is an order I don't mind listening to!

Every day brings on yet another challenge. I am actually taking my time typing this blog, as it is difficult keeping my hands on the keyboard. But I needed to write about my experience so that others, contemplating this new treatment for osteoporosis, might reconsider their options.

I am trying to work on my doctoral dissertation. I have come so very far and refuse to stop now!

Until next time, please continue to keep me in your prayers, as I keep you in mine.

God bless.

It's Catch-Up Time

2008-10-24T00:20:00.013-04:00

Yikes! It has been five weeks since my last posting. I am so, so sorry for the delay.

Many of you wrote to me, personally, to make sure nothing was seriously wrong. Thank you so much for checking up on me.

So much has happened over the last month that this post promises to be chock full of stuff! Where to begin?

My health has been...well...hmmm?! Overall, the docs say I am back in remission. That is the good news.

The bad news is that my cholesterol level is 227, LDL 137 (the one responsible for clogging up and blocking arteries, resulting in hardening of the arteries (atherosclerosis), which is an accumulation of fat buildup inside the walls of our arteries), and triglycerides 195 (chemical form in which most fat exists in food as well as in the body). I just happened to have an appointment for a stress test and brought my blood test results along. Needless to say, the cardiologist was not at all pleased.

The numbers, based on my age, are considered "borderline high risk." It was suggested by my primary doc to go on a strict cholesterol free diet for three months and then he will retest.

But my cardiologist said there is only a 20 percent chance that the diet will make a difference. Considering my family history, the odds are against me.

Mom had five bypasses a few years ago, Dad had cardiac issues and a heart attack prior to his cancer diagnosis, and my grandfather died of a massive heart attack. So, that gives you a pretty clear picture of what the future holds for me. Ugh.

Most people with high cholesterol are put on statin drugs (HMG-CoA reductase inhibitors). These drugs lower the level of cholesterol in the blood by reducing the production of cholesterol by the liver. Statins block the enzyme in the liver that is responsible for making cholesterol.

Of course being put on a statin would pose a risk for someone like me. You see, rhabdomyolysis is a serious side effect of taking a statin...one in which there is damage to muscles. Rhabdomyolysis often begins as muscle pain and can progress to loss of muscle cells. Figures, right? Me...the one with the muscle disease...?! I guess this would be my last resort.

Other than that, ha ha...I have intense pain in both hips since the temperature dropped. I had been going to yoga once a week, but that is on hold for now. I will take it a day at a time. At least I am able to go for walks now, but I was actually in bed for a few days unable to move around.

Enough of that! Let's see...what have I been up to?

Back on September 20th, my band traveled across the GW Bridge to perform at Montclair State University's Centennial Celebration! Why New Jersey, you ask? Because that is my alma mater! Ah...ha!!!

Way back in the day...1980 to be exact, I graduated with a bachelor of science in physical education and health! I have only been back once since then, and let me tell you...I didn't recognize the campus!

My band was asked to perform from noon to 2:40 in the middle of campus, right outside of Memorial Auditorium. The weather that day was glorious. And I must tell you, it was one of the happiest days of my life! I didn't stop smiling for a second!

Thousands of people passed by during our performance...and we received many thumbs up, nods and overall positive responses! But the most amazing part of the experience was when several people, from my past, showed up to see the show! Friends who I haven't seen since 1976! That blew my mind! Thanks Rich, Nora, Sharon and Benay for stopping down!!!

The following weekend we performed at one of my favorite places on earth...Robert Moses State Park. Despite the damp weather in the morning, we took to the stage right near the ocean at field 4, with my beloved Fire Island Lighthouse to our right!

The crowd truly enjoyed our music, so much so that they hired us again...on the spot...for next year! How much better does it get than performing at the beach? Not much!!!

In between that time, my friend Dawn unexpectedly lost her dad. Time truly slips away from us, and we just never know what tomorrow will bring. My heart and love goes out to her.

And my thoughts and prayers go out to Helene, a very close family friend, for a speedy recovery. Sending lots of love down to Florida!

My family celebrated the Rosh Hashanah holiday at a relative's in Muttontown. There were over 30 people seated at the table for dinner...and we had a great time! I found out that evening that Alicia Keys lives around the corner from where we were having dinner. Sure wish I knew the house number!!!

I attended yitzkor services at the Bay Shore Jewish Center on Yom Kippur morning. A friend of ours is the Cantor at that synagogue, so it was quite a treat to listen to her chant the hebrew blessings. It was an emotional day, as it always is...remembering my beloved Dad.

I also had the honor and priviledge of participating in the Pride Alliance of Long Island's Third Annual National Coming Out Day Interfaith Service. The evening of prayer was held at St. Bede's Church in Syosset, where we honored the memory of Matthew Shepard on the 10th anniversary of his death. I was one of three religious leaders who gave sermons during the service. I will include my sermon, in its entirety, it at the end of today's blog!

Sally, Jarrett and I took a day trip out east to Seven Ponds Orchards on Columbus Day to pick macoun apples...our favorite! The air was brisk and the sky overcast, but we had a blast! We even had the opportunity to pick peach-colored blackberries! They were delicious!It is just about the end of October. Our pool is closed, the leaves are lit in brilliant colors and the temperature is dropping rapidly. Goldie and I took a walk to Southard's Pond, and I want to share the photo I took with all of you. Mother Nature in all her glory! God bless!

---------------------------------------------------------
Rev. Beverly's sermon given on October 11, 2008 for National Coming Out Day:

"National Coming Out Day is being celebrated today to promote government and public awareness of gay, lesbian, bisexual and transgender rights, and to celebrate who we are as human beings.

It also marks the tenth anniversary of the brutal murder of Matthew Shepard, who was viciously beaten and left to die on a split-rail fence in Wyoming, because he was gay.

As our community continues to mourn this senseless death, Matthew Shepard is remembered today as a young man who had the courage to be true to himself. And for that, he paid the ultimate sacrifice.

This evening, we celebrate the unity we create in the midst of our diversity, affirming the inherent beauty, worth, and dignity of every glbt and straight person.

No one is free when others are oppressed. And as a spiritual leader, I promise to take responsibility to lead, protect, and affirm GLBT people: children, adults, and their families.

Coming out to oneself means to acknowledge, to oneself, that one is gay, lesbian, bisexual, or transgender. This is the very first step in the coming-out process; and it often involves soul-searching or a personal epiphany of sorts.

When a person makes that choice to finally "come out,” they must continue to out themselves daily, upon making every new acquaintance and in most new situations.

As members of the GLBT community, we have a long way to go for total acceptance. But we are making great strides.

Yesterday, the Connecticut Supreme Court ruled that same sex couples have a constitutional right to marry, joining California and Massachusetts.

It is my hope that after next month’s election, New York State will also recognize that marriage is a sacred union for all people who are committed to each other without regard to gender. Love makes a family.

The choice is not whether to be GLBT or straight, but whether or not to live an authentic life.

In conclusion, I would like to offer this affirmation for hope for our community and the world:

Hope enters the world, riding on the wings of peace.

All hope is born of love and peace.

When I hope for peace, I hold great possibilities within me.

Like a seed hungering for water, hope waits eternally for the flame of god to ignite its power.

I hope for all things, for all things are possible.

I hope for peace, faith, love, acceptance and tranquility for all.

Hope is all.

Amen."

These Are A Few Of My Favorite Things

2008-09-15T23:31:00.017-04:00

It is approaching the midnight hour, but once again, I am awake. Thought this would be a good time for a blog update!

In my last entry two weeks ago I was preparing for my abdominal CT scan. The test went smoothly and Dr. K's office called about a week later to say that it didn't show anything.

So the next step in this "elimination" process is to have an endoscopy. I scheduled it for October 28th...next month...on purpose. The last time I had that test it affected my vocal cords. With two huge gigs coming up, I couldn't risk anything changing my singing voice.

In the meantime, I went to my ENT that same day (yes, I am a gluten for punishment) since I was having serious issues with my throat. I totally lost my voice at my last gig and it was not coming back. Dr. London used the endoscope through my nose and looked down my throat. Thank goodness all is fine. No polyps, inflammation...NOTHING.

He said that singing for an extended period of time...in the heat, and then going into air conditioning put a serious strain on my vocal cords. The best thing is to take Mucinex daily and rest the voice for a few more days. I was lucky this time!

I started my 'Yoga Mornings' class at the West Babylon Public Library, with my friend Liv. It is a four-week course that is supposed to help increase strength, flexibility and balance...while creating a sense of calm and focus.

Needless to say, I AM NOT FLEXIBLE! I think my excuse is a good one: I have a muscle disease! After our teacher Cathy almost ripped my hip joint out of its socket to put me in the correct alignment for a specific pose, I informed her of my plight and she promised to be kinder to me in the future.

The biggest and best surprise came on Saturday, September 6th...around 4:30. My friend Julie called me on the phone and asked us what we were doing. Since we had spent a few hours earlier in the day walking around the Argyle Fair with our friends Ceil and Liv, I was resting. But not for long!

Jules(I love you, girlfriend!) informed me that she got her hands on two extra tickets to the US Open Women's Tennis Finals for that evening! OMG!!! I could NOT believe it! We were actually going to watch Serena Williams, in person, at the FINALS!

We took the train from Manhasset around 6 pm to the Shea Stadium stop in Flushing Meadow, Queens. When we got off the LIRR, I took a deep breath and gazed at the US Tennis Center in awe. It has been more than a decade since I had been at this glorious tennis icon...and it was the first time I would witness the women's final!

The center is much more commercialized since the last time I was there, but it still was overwhelmingly magnificent. Jules, Sally and I wandered around, taking in the sights and sounds around us.

Entering Arthur Ashe Stadium was extremely emotional. And to top off the best evening of the summer, one of my all time favorite R & B singers, Anita Baker, gave a concert prior to the match! Can you believe it?

My longtime hero/tennis legend, Billie Jean King, strolled onto center court and tossed the coin to decide who was going to receive serve. Tennis great Martina Navratilova was in the audience and waved to the crowd. Many celebrities were acknowledged throughout the match...which made the evening much more special!

My heart was full...I was so blissfully happy all evening. Especially after Serena defeated number 2 seed Jelena Jankovic in a thrilling 6-4, 7-5 final in Arthur Ashe Stadium. Not only was it Serena's third US Open title, but this win earned her the number 1 ranking in the world!

Unfortunately, my happiness was extinguished the next evening at dinner. I was cleaning up around the kitchen and took a spill on the floor...injuring my right wrist.

Of course, I was thankful I didn't break anything. Especially since I was supposed to do a solo performance at a benefit concert that Saturday! Can't play the keyboard with a sore wrist now, can I? Yikes!

Hurricane Ike was slowly inching its way towards the Gulf Coast, causing dangerous rip currents and gigantic waves here on Long Island. I drove myself down to the beach, camera in hand, and took some amazing photos.

The ocean has always been a safe haven for me. A peaceful place to meditate, work out my problems or just to spend some alone time. Despite the larger than normal waves on the Atlantic, the beach was as beautiful as ever. And I witnessed one of the most beautiful sunsets I have ever seen that evening. God is truly amazing.

This past Friday, Sally and I were interviewed by a Newsday reporter for a story on American families and the US Census. She is sending out a photographer to take a family portrait to go along with the article. It is interesting to be on the receiving end of a reporter's questions, rather than acting as the middle man/PR pro. For almost 25 years I played that part...probably the reason I am so comfortable being questioned now!

Then on Saturday, I had the pleasure of performing at "Coffee, Cake & Comedy IV," a charity event to raise money for the Gay and Lesbian Democrats of Suffolk County. It was the second time I participated in this worthwhile cause, and it truly was an unforgettable evening.

A few months ago I wrote a jazz instrumental piece that I was planning on performing just for that evening. But what no one knew...specifically Sally...was that I wrote the piece for HER! In fact, the piece is entitled "A Song For Sally!"

Despite my obvious nervousness, I took to the stage like a fish takes to water. Once I began to play my keyboard, I felt right at home. The audience's loud applause and yells as I finished my number proved that I still can perform alone.

I must remember that I CAN DO ANYTHING I PUT MY MIND TO! There were actually a number of people who asked if they could buy my CD! Guess that is a huge reason I should get my butt into the studio soon, right?!

On another note, Hurricane Ike did hit Texas over the weekend, and will be entered into the record books for the severe damage it inflicted in and around Galveston. The storm's enormous size, nearly as large as the entire state of Texas, spread its destruction from eastern Louisiana to Texas! Many people lost their lives, while thousands lost their homes.

I want to send a special message of love to Mom Suzanne and her husband Lou who were caught in the middle of the storm. Thanks be to God that you made it through with only minor damage. We love you, and pray that your friends and neighbors in Texas get all the assistance they so desperately need.

Another special message goes out to Aunt Patricia who is resting comfortably and recovering from knee replacement surgery. We love you...and I can't wait to give you a huge hug one day very soon!

This upcoming weekend is my band's gig in New Jersey. I cannot believe I am crossing the GW Bridge and going back to my alma mater, Montclair State... 28 years later, to perform at their Centennial Celebration! I hope to have the time of my life!

I will keep you posted!

Until next time...God bless! And keep smiling!

First Day of School

2008-09-03T07:45:00.008-04:00

Today is the first day of school for the kids on Long Island. I can hear the sound of the yellow school buses driving past the house. It brings back mixed emotions for me, both happy and sad. Our son Jarrett did get up and out on time...and headed out to the high school to begin his sophomore year! WOW!

Summer is "un"officially over! But we had another great one! Jarrett spent eight weeks, on and off, at three different camp sessions. But it is nice to have him back home with us!

Sally, Jarrett & I enjoying the last days of August!

Right now I am sitting here "drinking" my Readi-Cat, preparing for today's abdominal CT scan. I am forcing myself to finish the 450 ml container of barium sulfate suspension, knowing that in two minutes I have to drink another one. Ugh.

My gastro, Dr. Kongara, is not sure why I am having so much discomfort in my upper abdomen. But she did say that many women who have been on large doses of prednisone sometimes never lose the fat pads in that area. Figures, right?

I have lost inches over much of my body, but the stomach just won't change. However, if that is the only area that was affected by the prednisone, I can deal. She has scheduled me for an upper endoscopy towards the end of October. The reason being is that the scope usually affects my voice, and with all of my upcoming gigs, I can't take that chance.

I also ventured into NYC to see Dr. Spiera for my quarterly visit. He is concerned with the amount of pain I am experiencing in both hips, so an x-ray of my hips is being ordered. He felt it could be bursitis , which is the inflammation of bursae sacs of synovial fluid. These sacs rest at the points where muscles and tendons slide across the bone.

However, he felt strongly that we need to rule out Avascular Necrosis. AVN is a bone and vascular disease, referred to as 'bone cell death.' It is caused by a diminished blood flow to the bone. Prolonged use of steroids is often the culprit, and it can only be detected on an MRI. BUT, I cannot get an MRI until I have an x-ray. (Ya know those freakin' insurance companies!!!)

Dr. Spiera also thought it is time for a new chest x-ray to rule out any underlying issues, including...believe it or not...TB. Now...that blew me away, but I guess since I am immunosuppressed, we have to cover all bases. I have been experiencing increased night sweats and no sleep.

Other than that...I am fine!!! LOL (I've got to have a sense of humor about all this, right?)

Emotionally, I am getting myself in check...and am optimistic that things will be okay. I guess it is normal for the mind to play tricks at times, especially when life is so uncertain at times. Despite the constant pain I am in, I know that the docs are trying their best to help me...and I must continue to help myself.

I have signed up for a Friday morning yoga class, which begins this week, and I am continuing to swim and walk on a regular basis...as long as the weather permits here on the east coast!!!

Sally took a few days off here and there so that we could spend a little time together before the crazy days of September begin. One day we drove out east, on the north fork, to Greenport.

We passed at least a dozen local wineries along the route, and I could not believe the size of the grapes! Sally and I promised each other that we would make another trip out east, specifically to one or two of the wineries, when they are making ice wine. Ice wine is a type of dessert wine produced from grapes that have been frozen while still on the vine. The bottles are small and rather costly, but well worth it! Yummmm!

As we approached the outskirts of town, I saw a sign for the Horton Point Lighthouse. Of course I had to see it, as I am trying to see ALL the lighthouses I can! The view from the Point was absolutely gorgeous! I am so glad we detoured a bit!

We walked around the town and saw the old carousel, as well as a brand new sculpture on the pier. It is entitled "Morning Call" -- a bronze sculpture of an ospry alighting upon a perch fashioned from beams of The World Trade Center disaster on 9/11/01.

"Morning Call"

Created by Roberto Julio Bessin

We ended our day with a lobster lunch at Claudio's! A little piece of heaven!!! Ahhhh! Sal and I outside of Claudio's, on the Greenport dock

My longtime college buddy, Sharon, drove down from NJ with her hubby Frank to spend a few days with us right before Labor Day. I still cannot believe we have been friends for 32 years!

We had a wonderful few days together...catching up on old stories from our Montclair State days!

Being former physical ed majors, we were always extremely athletic and competitive. We both realized, rather quickly, how competitive we still are...even at the ripe age of fifty! You should have seen us playing table tennis! You would have thought that a million dollars was at stake!!!

Now...believe it or not, Sharon and Frank showed up with a trophy, already inscribed with "The Boyarsky-Fincken Mini Golf Tournament." They challenged us to a game, loser buys ice cream. Needless to say, we lost...but not by much. I painstakingly gave over the trophy...but we vowed to win it back soon!

I really enjoyed playing catch up with my dear friend, and it was wonderful hearing all of the old Panzer stories. For those of you who don't know what Panzer is...Panzer Gymnasium was dedicated to a Swiss-born gymnast, Henry Panzer, in 1958. It was at this time that the Panzer College of Physical Education and Hygiene of East Orange merged with Montclair State College.

Panzer College was the last of the private, single-purpose schools and colleges preparing teachers of physical education and health in the United States. Because Montclair State College was then considering the development of a physical education major, the timing for a merger was perfect.

This historic event was engineered by Dr. E. DeAlton Partridge, president of Montclair State College, Dr. Margaret C. Brown, president of Panzer College, and the Panzer College of Trustees, with the approval of the State Board of Education.

Brown Lounge, named of course after Dr. Brown, was where we spent our free time in between classes. In fact, I received a leadership award my senior year and the plaque was placed on the wall of the lounge back in 1980!

I have forgotton almost all of my college years...due to my disease process. Little by little, as Sharon told us the stories, I got a few flashbacks. I was quite the character back then!!! (I guess I still am!!!)

I can't wait for our September 20th gig at Montclair State's Centennial Celebration. It is going to be AMAZING!

Labor Day Weekend was nice and quiet for us this year. My band had a private gig in Queens on Sunday, and it was wonderful. My Mom drove out here for a few days, and I was so glad she could be there to hear me sing. And my cousin Carol came out from NYC on Monday to hang out at the pool.

I actually have had no voice since my gig, so this afternoon I am seeing my ENT. I think it was a combination of things...allergies, vocal strain, etc. We'll see what he thinks!

Gotta go for my CT scan now! Until next time!

God bless!

My Bad...Sorry!

2008-08-18T08:35:00.023-04:00

It has been a month since my last update. Sorry for the delay.

The dog days of summer are just flying by, and unfortunately I just haven't been in the mind-set to write. I have even let my schoolwork fall by the wayside lately.

But I am back!

Hmmm...where to start? Ah yes...our trip to Provincetown.

We had a wonderful five days up at the Cape. The place we stayed was absolutely lovely. The only drawback was that it sat on the west end away from everything. We had a very long walk into town whenever we wanted to do anything!

Our room overlooked the bay, right across from the lighthouse. During high tide, we could sit on our balcony and the water was right underneath us! We took walks along the water different times during our stay, which was a treat!

A waterview of P'Town!

I found myself sitting out on my adirondack chair alot whenever we came back to the room.

A big highlight of our trip was the whale watch tour. Despite the fact that Hurrican Bertha was thousands of miles away, the water on the cape was extremely rough. So as soon as we boarded the boat, Sally and I both took dramamine tablets.

Before and during the boat trip!

Whales are such beautiful creatures. We saw so many of them I lost count! Being up close and personal, it was amazing to watch the water stream out of the blowhole...I was in awe! Also watching the mama humpback with her calf was also quite touching! We also saw several fin whales as well.

Of course the restaurants were first rate...the best seafood I have had in years! Just being away, alone together, was heaven on earth!

My biggest feat of our vacation was climbing to the top of Pilgrim Monument. Sally loves history, so I promised that we would explore the different historical aspects of Provincetown. But when I took one look at the tower, my knees buckled. How could I even attempt to climb the monument that was built to honor the Mayflower Pilgrim's first landing in Provincetown?
I took the 252 foot tall tower one step at a time! 116 steps and 60 ramps later...I DID IT! But of course, as soon as we got to the top the fog was so thick we couldn't see a thing! But just knowing that I accomplished that walk was so thrilling for me! (This photo was taken looking down the staircase!)

Upon our return from the trip, I went for my monthly muscle enzyme tests. Within a few days, Dr. Rumore's office called to tell me that my blood test results were "excellent!" Excellent!!! Never thought I'd hear that word describe my blood test results!

Honestly, I don't feel excellent. But Dr. Rumore did tell me that this may be the best I will feel. I should not complain. I can't play tennis cause my hips just can't take the strain. Walking is difficult at times, but not all the time. I have an appointment with Dr. Spiera on Thursday...so I will see what he thinks I can do about the discomfort.

I also have an appointment with my gastro on Wednesday. I found what appears to be a "mass" in my abdomen. I have lost inches everywhere except that area, and my weight remains the same. Don't know if it is nothing...or possibly a problem. I will leave that for the doc to determine.

Jarrett came home from camp for only a few days, and when he approached me I had to look up! Yep...my son is taller than me! Knew it would happen eventually! ha, ha! He is back at camp now, and returns home for good on the 23rd!

Before he went back to camp, we took him out east to the Metro Balloon Fest. Again, it was difficult for me to walk all day, but I did it. The balloons, as they ascended, were amazing to watch! I hope to be able to take a balloon ride one day...that would be something! Oh...and little Goldie got her first haircut! An old friend of mine opened up a grooming business, so I took Goldie to her shop. Unfortunately I couldn't stay with her, but Tina was kind enough to take a photo of Goldie in the tub! When she got home, I shot the most beautiful photo of her with her new haircut. She oughta be in pictures!

The last two weeks have been very difficult for me emotionally. I have realized that I am in a totally different mind-set them most people in my life. I am not sure if it because I am now 50 or because of all the health-related issues I have experienced over the last four years.

I am most happy singing with my band or taking in mother nature at her best with my friends or loved ones by my side.

I can't say that I have less tolerance, but maybe I am just in a totally different place. I realize that life is extremely short. The days, months and years are flying by and I have a lot of living to do. But I don't know what God has in store for me at this point.

I do know that I must enjoy each and every day, without all the bullshit. I just don't have the patience for that any longer. I only want positive energy around me, even though I know realistically that is almost impossible. I want to be happy. I want my friends to be happy. And most importantly, I want my family members to be happy.

What is happiness? It is whatever puts a smile on your face. Something that is stress free with no strings attached. It is when your heart is so full that it smiles inside! It is the little things in life that mean so much.

Last week my friend Julie took me in her 4-wheel truck to the beach in town. I never experienced 4-wheeling on Long Island, and let me tell you, it is awesome! She took her golden Taylor and I took Goldie...and what a fantastic time we all had!

Up until that day, Goldie had no use for the water. Yes...she is a golden retriever, but she hates the water! But Goldie found piping plovers, ya know, the species of birds that nest on undisturbed beaches!

Every time she saw one, she took off like a bat out of hell! I cannot even describe how fast she is! Julie and I were laughing uncontrollably! What was even funnier is that the birds caught on so quick that they starting teasing Goldie. They would come up real close over head, make noises and then take off so Goldie would run after them!

It was a blessing watching my little pup frolicking in the surf. She had the biggest smile on her face. My heart was full watching her running and jumping.

Just like I said, it is the little things in life that bring the most joy!

A Scorcher--Dog Days of Summer!

2008-07-18T07:57:00.005-04:00

The temperatures are rising today! We are in the middle of a heatwave, but that is fine with me!

I love the summer. The grass is a beautiful shade of green, all the leaves on the trees are in full bloom, and the vegetable garden is beginning to share the fruit of its bounty with us!

Walking in our backyard is paradise for me. In the early morning, the pool glistens from the early sun and the grass is damp from the dew. You can smell, see and hear Mother Nature at her best...with the blue jays, cardinals, monarch butterflies, etc.

At night, I can catch a hint of salt air while I sit on the swing under the maple tree, watching the stars dance above. Ahhh...isn't life wonderful?

Only two more days until we leave for our trip, but I wish I felt better. I actually had an appointment with my primary yesterday regarding how I have been feeling.

He was concerned that my discomfort could be cardiac related, but most likely it is the gastritis acting up again. It seems that whenever I have my treatment, the gastric juices get angry. I will contact my gastro and see what she wants to do.

As far as the knee and hip pains, I got the name of a really good ortho...so I will make an appointment as soon as we get back. He doesn't want me to use a leg brace because it can cause blood clots to form. We don't want that now, do we?

Took a ride to the Fire Island Lighthouse this week, and spoke to a few people about my band to see if we can play at their car show in September. One of the VP's is going to stop by our show on Saturday to check us out and make a decision. It would be awesome if would could play at Field 5 for the car show. What is better than gigging at the water next to the lighthouse? NOTHING!

Tomorrow night we have our gig in Queens, and I am trying to arrange another gig at a private swim club in Bayside for Labor Day weekend. We had a blast last year, and I hope it all works out again.

On another note, my two furry kids...Goldie and Dylan...don't seem to mind the heat lately, but they both have no interest in swimming. When we go down to the lake, Goldie walks right in. But I tried to coax her into the pool, and she runs away.

Honestly, I pulled her in the other day and she freaked out. And yesterday her back legs accidentially fell into the pool and she froze. She was walking too close to waters edge, but I got her just in time. I thought goldens were supposed to love the water??? Strange one, huh?

Jarrett came home on Wednesday for a few days, and I spent hours washing his dirty laundry and repacking. It wasn't too, too bad. He heads back to camp tomorrow. He has grown so much taller in just three weeks. We are just about eye-to-eye!

I cannot believe he is turning 15 on Tuesday! 15!! We took him out for Chinese food last night to celebrate...per his request!

Well, gonna run. I have a few errands to do before we leave on our trip. And we are planning on catching a free concert at the beach this evening...Strawberry Fields. They are supposed to sound and look just like the Beatles. I can't wait!

Will fill you all in upon my return from vacation. Until then, God bless!

July 11: Part II

2008-07-11T11:59:00.007-04:00

Okay. Let me begin where I left off at 3 in the morning. I am a bit more awake now!! LOL

I had an appointment with Dr. Rumore on the 23rd, and he was pleased with my progress since the Rituxan. However, he was just as baffled as me regarding the speed in which my health spiraled out of control.

My bloodwork was all within normal range, so there is no medical explanation as to why I became so ill so quickly. At this point I have to pay extra special attention to the signs and symptoms. He hopes that I can go over a year without another chemo treatment. We'll just wait and see.

Our little Goldie came home from training school. Wow, did I miss her like crazy! She has been totally transformed into a service dog.

Goldie came into the house with her little red vest...and had the largest smile on her face! The trainers went through all of her assignments and skills. Quite an impressive list! When the phone rings, she can answer it. She can fetch the remote, my keys, utensils, a bottle of water out of the refrigerator...just to name a few.

If I ask her to brace, she puts her body across my knees so I can get out of bed, out of a chair or out of the shower. Cool stuff!

Needless to say she collapsed as soon as she went into her bed. Poor little baby...she worked so hard! But she is home. Hooray!

Jarrett left for his first session of camp, so Sal and I have had some alone time. Well, sort of! We are keeping so busy that we actually haven't been alone too much. Between hanging with friends and life in general, we are still very busy. But we are leaving for our honeymoon next weekend...which will be wonderful!

I have been trying to get into a somewhat normal routine, but I seem to have hit some glitches along the way. I started playing tennis two days a week at the town's summer recreation program. I had made a promise to myself that if I get stronger, I will try and play again. I signed up for a class specifically for intermediate players, but most are not quite at that level. I am doing well, but my right knee and both hips are very much inflammed. I am not sure if it is the disease process, a result of taking prednisone or my age. I will find an orthopedic doc and see what he/she says. In the meantime, I will rest up for a few weeks, and try tennis again when we get back from our trip.

The band has been doing well. We had an outdoor gig at a church festival that was successful. I really rocked out that evening...music really gives me a natural high. I am so excited about playing at Montclair State's Centennial Celebration in September. Having my NJ family and friends in the audience will be awesome!

Over the last few weeks, several people close to me have gone thru illnesses and surgeries. Prayer is very powerful...and I am happy to report that Ceil is fully recuperating and looks amazing. And Frank is getting back to good health. Unfortunately, his dad got some upsetting news...and I will continue to put him in my prayers.

We celebrated Independence Day at a local town park this year with Pat and Dawn. We were treated to a free Beach Boys Concert and watched the Jones Beach Fireworks from the waters edge. Despite the wonderful day, I kept thinking of our brave men and women who are still fighting for our freedom each and every day. God bless them all.

It was also our friend Julie's birthday, and she was supposed to have a beach party but the weather did not cooperate. So instead we packed up the pups, yes both of them, and celebrated at her home. It was a lot of fun! Lots of great food and fantastic wine!

Mom and Nancy drove out here on Wednesday, and we had a great day. We hung out by the pool, drove down to Fire Island National Seashore and had dinner at Pier 44. We ended the evening with a Frank Valli concert at Westbury. That man can still sing. Wow! The music brought back some great old memories for me. Ahhh...the good old days!!!

Well, that's enough for now...I think! I am looking forward to this weekend when Sal and I can enjoy the summer together. And I am especially excited about our trip to Provincetown next weekend. It has been too long since we got away.

Watch out Massachusetts. The Boyarsky's are heading on up!!!

I Needed A Boost

2008-07-11T01:46:00.004-04:00

Today is July 11th. 7-11. A very significant day in my life.

My late father, William S. Boyarsky, was born on July 11, 1926. He would have been 82 years old today, if he were still of this life. But my daddy passed away three years ago after fighting for almost ten years to beat CLL.

The numbers 7 and 11 always played a huge part in my life while I was growing up. No matter when I looked at the clock every morning in my New Jersey home, it always seemed to read 7:11. Each and every day I would glance over while getting ready for school, and it was always that time. I couldn't explain it back then, but I remember mentioning to my mom in passing. The interesting thing was that she said the same thing happened to her.

Nowadays, whenever I see 7:11 on my clock, I am reminded of my dad. It brings a warm fuzzy feeling into my heart, and always brings a smile to my face. In fact, I usually say "hi Dad" when the clock strikes 7:11...hoping that perhaps it is my Dad who is saying hi back to me!!!

As an aside, I am sorry that I haven't written a new blog entry in almost a month. Many of you have written or called and asked if everything is okay. The answer to that...yes and no. My recovery from the last Rituxan was difficult, but I am finally seeing the light at the end of the tunnel.

I will try to fill you in on the last few weeks, without boring you! Where to begin?

A few days before Jarrett left for camp, we took him to a Long Island Ducks baseball game. We had great seats behind the catcher, but the weather couldn't make up its mind. It was drizzling one second and beautiful the next.

That particular game was scheduled to have Grucci fireworks at the end of the night, so we stuck it out. Well, of course you know that the Ducks went into extra innings...14 in fact. But the fireworks were worth the wait. What a beautiful display! Ahhhhhh!

I Am Okay

2008-06-17T00:08:00.002-04:00

I'm baaaack!

I am finally feeling human again. After my Rituxan treatment on Thursday, my body seemed to have been taken over by some strange body snatchers. Between the vomiting, tremors, sweats...well, you get the picture...I didn't have too much fun.

Each time I have chemotherapy, my body reacts in different ways. All I did was lay down all weekend long. It was so painful just taking a shower. As the water touched my skin, it felt like someone was hitting me.

Over the weekend someone adopted our little cat, Gabby. We were looking to have both cats adopted together due to circumstances, but she only wanted the little one. I feel sad for Gizmo, as he is walking around looking for his little sister. But hopefully all will work out.

Between the damage she was doing to the house since we brought Goldie home, and with Jarrett's allergies, cats are not a good thing for us at this time. But we will keep Gizmo for now and see how things pan out. I have never given up a pet before, and it truly has broken my heart. Knowing that she went to a loving home does make it easier though.

On a positive note, I had quite a wonderful surprise on Sunday. The doorbell rang, and it was a delivery from Edible Arrangments. I couldn't imagine who sent me a gift.

The card read:

"Dear Mommy. I just wanted you to know that I love you so much. Miss you too, but I'm trying my hardest to learn everything I can so I will be able to help you. See you soon! Love, Goldie"

Can you believe it? Goldie's trainer, bless her heart, knew how much I was missing my little girl, so she sent the arrangment. There are truly wonderful people in this world!

Today I felt like I got hit by a truck, but at least I was able to go out for a few hours. I actually went over to the Boulton Centre to see psychic Jeffrey Wands. The evening was quite entertaining! Instead of standing on stage, he actually walked right into the audience and randomly did readings on audience members. Of course, he stood right in front of me and never looked my way!

However, he did a book signing after the show and I thought that it would be the perfect time to ask him a question.

All I asked was "Will I be okay?"

He looked at me and said, "Your grandma is right here and she says they aren't ready for you yet. You will be fine, just listen to her when she talks to you!"

Grandma...you know how much I love you. I always listened to you when you were here, and I won't stop now!

A Proud Day

2008-06-09T17:38:00.009-04:00

Baby, it's HOT outside!

We are in the middle of a heatwave, and it is only the beginning of June! But, I am not complaining!

I had a very busy weekend, and am now mentally preparing myself for Thursday's second dose--LAST DOSE--of chemo. I know that I will get through it, as I always do. But there is always a small part of me that is scared out of my mind.

I guess its just the process of sitting around, hour after hour, having this dangerous drug flowing through my veins. And the nurses are on me, like "white on rice," checking vitals every 15 minutes.

Since I had a negative reaction at one particular point two weeks ago, it was noted in my chart for this week. The infusion is given at various rates, but once a specific point is reached...I have to make sure they stay put.

Just as an FYI: Rituxan decreases the B cells, but it also increases the body's susceptibility to infection. Two weeks ago my reactions were minor. Hopefully this time, it will even be less.

Thanks to God, I had a great weekend, overall. We helped Barb and Monique with their moving sale on Saturday. I basically was handed cash! (Not a bad job!)

And yesterday, we celebrated Long Island Pride at the parade in Huntington. Because of the scorching temps, the attendance was much lower than in previous years. But, it was still a glorious day.

My honey and I celebrating 2008 LI Pride!

Sal and I drove two teens and one adult from The Center/LIGALY (Long Island Gay & Lesbian Youth) in our convertible down Main Street. There is nothing like hearing the crowed screaming and clapping when you are driving in the parade. I had some great dance tunes blasting through my speakers, and we were singing and waving! What a blast!

The kids were so touched that we offered our car. One young teen, in particular, thanked me and said that we were the coolest! She actually invited us to come down to LIGALY one Friday evening to their dance club and join them for a fun evening. That was sooooo awesome! (I always knew we were the greatest Moms!)

When we got into the park, we sat under a shady tree and enjoyed the entertainment. Disco superstar Maxine Nightingale headlined the show, and as soon as she got up on stage and started singing, I bolted out of my seat and took tons of shots. What a voice! She's still got it after all of these years!

Our friends Ceil, Liv, Pat, Dawn, Barb, Monique, Karen, Jacky, Sheila and Ro hung out...and then a few of them came back to the house for a barbecue and swim. But, as soon as we were in the pool, the skies opened up and put on quite a lightshow. Yep...lightening. That wasn't good!! LOL

Barb, Mo, Karen, Jacky, Sheila, Dawn, Pat & Sal in the park!

On the car-ride home from the parade yesterday was one of the best days of my life with my family. We had the top down and "Black Horse & A Cherry Tree" was blasting out of my speakers. All of a sudden, in unison, Sal, Jarrett and I started to sing our hearts out...laughing and dancing in our seats. (yes, we had our seatbelts on!) What a blast! It was so much fun, that I kept hitting the repeat button all the way home! People in the cars next to us must have thought we were nuts. But who cares?

It's the little experiences in life that can have the most meaning.

Isn't life wonderful?

This and That!

2008-06-05T00:49:00.003-04:00

It's almost 1:00 am in the morning, and I am not the least bit tired. So much on my mind!

I finally touched base with Dr. Rumore, and he agreed to reduce my prednisone dosage to 10 mg. per day. But he made me promise that I would take that dosage each day until next week's chemo treatment.

Because my health took such a dramatic turn so fast, he doesn't want to take any chances. I trust him and will do as he says.

I finally felt somewhat "normal" over the last 24 hours...less jittery. However, my gal pals Liv and Ceil took me on an outing today, and I couldn't keep a steady hand throughout our lunch. But we walked the entire length of the South Shore Mall...back and forth! That is quite an accomplishment, even with a cane!

I just can't seem to settle down at all. Between the hot flashes, swollen hands and feet, and constant hunger...it takes everything I have to just get through each moment in some sane manner!

In just one week I will undergo my second chemo treatment...thank GOD! Then it will be over for, what we pray, will be another year.

I am optimistic that all will be fine. I have been telling my friends that there is no use in complaining because I have been here before. So, watch out world...I will be back and stronger than ever in both body and mind!

In fact, tomorrow I am going to attempt to drive...I think it will be okay...and I am going to register for two summer classes. Golf and tennis.

Yes...SPORTS classes. Sal and I always wanted to share a sport together, and I suggested golf. The classes are held at a small course at the beach two evenings a week for five sessions. I hope we can get in the class...it would be a great thing for us to share.

And tennis. Well, considering I played pro tennis in my younger days...and I made a promise to myself that if I beat this disease that I would get back on the courts...I am going to give it a go.

They offer an early morning class right around the corner from our home, two days a week, for six weeks. Despite that I was a 6.5 player a thousand years ago in my former life, I am going to try and sign up for intermediate lessons. They begin the end of the month, so I should be ready by then. If not, well, I'll just watch until my strength comes back.

I have to purchase a pair of tennis shoes and probably a new racket. My older two are smaller and heavier than the newer models in the stores today. So I will venture out one day soon, before my next treatment, and test a few out.

Maybe you all think I am nuts...but life must go on. And this is my way of making it happen even sooner. If I just sit and wait to feel better, I may never get the kick in the pants I need! If I don't try, I'll never know. Right?!

My band is starting to line up some gigs, so that is a big plus for me. And I just received my paperwork from the NYC Office of the City Clerk. I am officially a New York State Registered Wedding Officiant! Which means I can marry anyone, anywhere!!!

More good news...
I was notified that I received an "honorable mention" for a contest I entered asking what it means to me to be a "Rockin Mom!" You can read my essay, along with all the other winners at:
https://www.rockinmoms.com/index.php
(Scroll down to the bottom...it is on the left hand side!)

We are supposed to have a gorgeous upcoming weekend. But very, very hot.

No complaints here. Sunday is Pride Day on Long Island...and I'll be with the thousands of other supporters marching on Main Street in Huntington Village. In fact, I offered my convertible to LIGALY (Long Island Gay & Lesbian Youth)...so I will be their chaffeur! (Hey, I can't walk it...so driving ain't half bad!) I'll just make sure I have hot dance tunes blasting out of my speakers!

May you all have a blessed evening.
Love to all!

A Late Night

2008-06-02T01:52:00.003-04:00

Wow! I cannot believe it is the beginning of June!

Everything is happening so quickly, and I don't really have time to think or react!

Five days have gone by since my Rituxan treatment, and in less than ten days I go back for the last one! This third round isn't as bad as the last two, but it still isn't fun.

I did rather well for the first few hours, but as soon as the nurse sped up the drip I knew it was going to be a problem! Thank goodness I was alert enough to realize the changes in my body, so she slowed it down until the treatment was complete.

Two benadryl's did absolutely NOTHING this time. I was so pumped up from the steroids that I actually didn't fall asleep until the next evening. What a horrible feeling to be wide awake for over 24 hours, and feel like crap. But when the steroid finally wore off, boy...did I crash!

There were several differences this time, from what I can remember. I actually had a horrible bout of the dry heaves after two days, but they passed rather quickly. I really haven't gotten the flu-like symptoms too bad either, just a mild fever on and off for two days.

I just can't sit still. I lowered my prednisone from 40 mg to 20 mg because I thought I was going to jump out of my skin. It's bad enough that I am swollen and irritable, but I don't want to get arrested for something out of my control!!!

We were actually invited to a housewarming party on Saturday in town, so I decided to go for a few hours...despite how I was feeling. And on Sunday morning we got out of the house early to run some errands.

The weather has been absolutely gorgeous, so I am sure that has helped my quick comeback to life. I don't feel great, but I will take this over last week's experiences. It got so bad that I could barely walk. It was amazing how fast my health took a spiral turn.

I am so thankful for all of the wonderful letters and phone calls from all of you. You have no idea how much each one of them mean to me.

This evening I decided that I wouldn't go to bed without getting my new website "live" and running, (feel free to check it out: www.beaconoflightministry.com) and that I would add a new blog update.

So, it is now 2:05 am and I have completed both tasks. Hooray for me!

Nothing is impossible if you put your mind to it. And with a positive attitude, there are no limits. NONE at all!

Today was a good day...not great...but good. And tomorrow will be even better!

God is Good

2008-05-27T14:05:00.004-04:00

The long Memorial Day weekend is over.

It has been a tough few days for me, but the dreaded predisone helped a great deal. However last night it truly took hold of me and literally took my breath away. I felt a horrible tightness all around my midsection, and it was a struggle to take a full breath.

When I spoke to the doctor's office on Friday, there were no guarantees that I would be able to get the chemo treatment this week...despite the fact that my health is spiraling very fast.

When I woke up this morning I had hoped that I would hear from the doctor's office, but in my heart I knew that it wouldn't happen that fast. Especially since the pharmaceutical company is located in California, and there is a three hour time difference.

I decided to read the paper for a bit, and when I looked at my horoscope it said, "There's no limit for what you can achieve today. Let your senses go wild and experiment with your ideas."

Just then the phone rang. No, it wasn't the doctor's office, it was a Newsday reporter! She had heard about me from another reporter that was publishing our wedding announcement. (BTW...our announcement will appear in Newsday this Sunday, June 1st! Be sure to look out for it!)

Anyway, she is the editor of Newsday's "Ask the Clergy" section in the weekend's paper, and wondered if I'd like to participate! I explained that I am a newly ordained minister without a "church" at present, but she didn't care! She was impressed with the little bit of background I told her, and she thought I was quite an eloquent speaker. So, I will be writing a small piece for her, which will be published on June 28th. Cool, eh?

Feeling all charged up after that call, I took my chances and called Dr. Rumore's office manager a few minutes later. She promised to call me back in a few minutes.

Within five minutes the phone rang and she said, "Are you free tomorrow?"

Believe it or not, Genetech approved the treatment over the long weekend, and the Rituxan is sitting in Dr. Rumore's office as I am writing this!

I will have my treatment tomorrow morning at 9 am!

Thanks, from the bottom of my heart, to all of you who sent me prayers and good wishes over the last few days. They have been answered.

And a special thank you to Dr. Rumore and his staff, and especially to Genetech Pharmaceutical Company.

I will try and get some rest tonight, and be ready 1000 percent for the chemo treatment in the morning.

God is good...ALL THE TIME!

I Can Do This

2008-05-22T22:07:00.004-04:00

I am trying to be strong.

I am really angry inside, but I am trying not to let it show.

At the end of this evening's blog, I am going to ask God to give me as much strength as I can to get through the next several weeks.

Yes...I need chemo again. Dr. Spiera was not at all happy with the status of my health at today's visit. He said last week's bloodwork results were status quo, nothing out of the ordinary. But after he thoroughly examined me and asked me many questions, he said I need Rituxan as soon as possible.

He tried to call Dr. Rumore while I was in the office, but was unsuccessful in reaching him. Dr. Spiera said I should start prednisone (ugh) immediately to get me through until the treatment. He wants to follow the Rituxan RA (rheumatoid arthritis) protocol...1000 mg. one day, then 1000 mg. fifteen days later. Just as last year.

Dr. Rumore finally called me this evening around 9:30 and was shocked to hear the news. He couldn't believe how fast my health has changed, and will make the calls tomorrow to get the approval. We just don't know if my new insurance company will pay for the treatment. If not, hopefully the pharmaceutical foundation will donate it again as they did last year.

Either way, the longer I wait, the worse my health will be...day to day. I will follow up with a phone call to the point person in Dr. Rumore's office tomorrow to see if they have any tentative dates. And I will start the 40 mg. of prednisone (double ugh) tomorrow after breakfast.

This is really difficult.

I know in my head that I need to have the treatment in order to get well. And I have been through this before. But that doesn't make it any easier.

Dear God,
I am aware daily of your presence within me as the ultimate life energy, force, mind and spirit of my selfhood.

I completely turn over the will of my body, mind and soul to you.

I totally accept my inner oneness with your presence, power and wisdom and love, and will think positively about myself and my life.

I totally accept that healing and good health are the natural ways of life for me, and I accept this throughout my body, mind and soul.

I call forth into the presence of my creator within me, Almightly God, my creator.

I affirm that through your love for me, your creation, you allow me to reprogram my mind with thinking that is in tune with your will for my soul's purpose in this lifetime.

For this realization I give thanks.

I let it be so.

And so it is.

The Spiral Begins

2008-05-15T22:41:00.008-04:00

It's the middle of May, and the last two days have been absolutely gorgeous. But the rains are heading our way, again.

I want it to be summer-like temps now! Enough with the rain. The rainy season was supposed to end in April, right? Isn't the saying "April showers bring May flowers?" No one ever said anything about the rains in May!

In between the raindrops, we have had some sunshine. I have been out in the garden planting flowers, as well as taking care of the pool. Unfortunately I haven't gone in because the air is just a bit too nippy.

Over the last two days I have seen a dramatic change in my health. I can sense things changing in the upper portion of my body, as well as my mind. Friends have said that their joints are bothering them because of the barometric pressure changes, but this is different. The pain is becoming intense.

Yesterday morning I met my friend Julie at the park, and we walked our pups for over an hour. My legs are still rather strong, but my mind seems to mix up the words before they get to my mouth. And I am dropping things much more often.

I have sharp pains in my shoulders and elbows, and an overall achey feeling throughout my arms. I don't sleep through the night, and am completely exhausted each afternoon around 1:30.

My mom reminded me that this was the way the disease process started back in 2004. I'd be sitting at the dinner table, and I couldn't hold on to my fork. Or I would start speaking, and simply forget what I was saying mid-sentence.

Why is this happening to me again? WHY?

I had been doing so well for almost a year. One whole year. But I knew in my heart that the remission couldn't last forever.

My appointment with Dr. Spiera is next Thursday, and I went for my muscle enzyme bloodwork on Tuesday. It really doesn't matter what the blood tests come back as...because both Dr. Spiera and Dr. Rumore told me that their decision of starting chemo would be based on how I am doing physically.

The drawback this time is that any treatment moving forward is all a "shot in the dark." There is nothing set in stone in the medical journals, as far as treatment procedures at this point in my diagnosis. I have to trust my physicians (which I do), and keep God really, really close.

Despite my symptoms, I have pushed myself to continue my schoolwork. I am not studying as much as I want to, but I have to listen to my body.

On a good note, my new friend Lynn completed the logo for my ministry. She worked tirelessly for two weeks, with some assistance from her students. I am so blessed to have met her, and want to thank her again from the bottom of my heart for all that she did!
Last week our friends Joanne and Kristen invited some of the gang over to watch the wedding video. It was so much fun seeing everyone's reactions to the day's events. What a beautiful thing!

Now we have to work on thank you cards. Yes, we got them already.

Isn't the photo fantastic? (if I do say so myself!) And I am sending our wedding announcement in to Newsday. Can't wait to see it in print!

I am having trouble typing, so I will say good night for now. Keep the faith!

And please, keep me in your prayers, okay?

Running for Those Who Can't in 02:35:48

2008-05-05T11:05:00.022-04:00

Despite yesterday's dismal weather at 8 am, 5,500 runners from all over the United States gathered near the Cradle of Aviation Museum to begin their long journey to complete the 10K, half marathon and marathon races.

Among them was one very special person--Lisa Korcz of Levittown, New York. Lisa dedicated her first-ever half marathon to The Myositis Association (TMA), in my honor.

Thanks to many of you, Lisa met her goal of collecting $1000. In fact the money is still coming in!

Our friends came by our home at 6:30 to caravan to the park. I can't remember the last time I was up and out at that hour! We drove out to Eisenhower Park, parked the cars on the outskirts of the park, and took the long hike to the starting line.

The skies were overcast and the ground quite damp, but the rain never came down upon us! As we approached the starting line area, you could feel the magic and excitement in the air!

Trish, Karen, Stef, Chris, William, Jacky, Sally and I took our positions right past the starting line so that all of the runners could read our sign. We wanted to show everyone how proud we were of Lisa, as well as educate the world about myositis. Each of us wore our special myositis shirts that I designed specifically for the event.

Watching thousands of runners take off after the sound of the gun, led by three "runners" in wheelchairs, sent chills down my spine. What a magnificent sight! God bless them all!

Local news crews filmed us, while many of the marathon runners gave us the 'thumbs up' sign as they passed us along the route. If people learned one new word for the day, MYOSITIS, then it was all worthwhile!

We waited to find Lisa amongst the hoard of athletes, and finally spotted her on the first turnaround. She gave us a little spin, showing off her t-shirt, and continued on her destination! After cheering on the other runners, we walked back into the park and headed towards the finish line. In just two hours, thirty-five minutes, and forty-eight seconds, Lisa completed her first half marathon and proved that if you set your mind to something, nothing is impossible!

With teary eyes, I met Lisa at the finish line, and I gave her a huge hug. No matter how many times I thank her, I don't think she'll truly ever realize how much this meant to me.

I want to run in next year's race.

I want to be an athlete again.

I want to get up every day without pain, with the ability to just live a normal life again.

Maybe one day I can. But until then, it will take more than just one person running for myositis to make a difference.

We need people to understand that researchers cannot find a cure without financial support. Even the local media didn't seem too impressed with Lisa's story! They said that every day, people go out of their way to help others with cancer, leukemia, lupus or MS.

They just don't understand that there are thousands of us living with this rare, incurable disease...and no one wants to take the time to listen to our stories.

In order to find that cure, it takes knowledge. If the press won't do a story on myositis, how can people find out about it?

I hope and pray that this is the just the beginning of the education process here on Long Island. Thousands of people read our banner, and learned about my story.

With all my being, I am dedicating my life to helping others with chronic diseases. And, I am just in the beginning stages of planning a huge event to raise money for TMA.

Stay tuned...!

Understanding The Mind

2008-05-03T09:32:00.006-04:00

My body appears to be slowing down. Little by little, I see the subtle changes taking place. With each step, it takes more effort to move one leg in front of the other.

I can feel my joints and muscles as they try to do the most simplest of tasks. The rubbing of my hip muscles as I climb up the stairs, the twinge in my knees, the sharp pain that goes right thru me...all signs that my body is starting to break down again.

Mentally, I am ready for whatever needs to be done to get me back on the right track again. My next blood test is in two weeks, so the docs can have a definitive look into what is actually going on in my body. Then in three weeks I am off to NYC to see Dr. Spiera. I will hold on tight until then.

On Thursday I went out to Patchogue for my second NeuroTrax. This test is specifically for early detection of cognitive impairment in clinical practice.

Cognitive health is a term that refers to the wellness of brain function. While the ability to perform normal activities of daily living is usually taken for granted, it depends on complex brain function. Different parts of the brain interact to result in our ability to think, remember, read a map, and perform the effortless movements and thoughts that define who we are

I should have the baseline results in a few weeks, but the final results can take up to six months. I made an appointment with my neurologist for the first week in October. Time will tell.

I am continuing on with my metaphysical studies, and am truly fascinated every time I turn a page in my book. I just concluded the section on "The Metaphysical Psychology of Consciousness." In order to keep pace with this ever-changing world, one must truly learn to understand one's consciousness. In metaphyics today, it has been said that "The examined life is far more worth living." How true that is!

Yesterday's lesson was entitled "Yoga and the Mind," and I was fortunate to find out that the Eyes of Learning, (a local metaphysical study group) was holding a lecture on "Our Mind and How to Control It."

You know that it was no mere coincidence that my studies and this lecture were on the same day, right?

My friend Dawn accompanied me to the lecture which was presented by Swami Mokshapriya Shakti, PhD. She is affiliated with the Yogashakti Yoga Center in Richmond Hill, Queens.

"Mokshapriya" has been a spiritual guide and yoga teacher for over 35 years, and was ordained in India as a Swami. She talked about the various methods one can control and gain power over one's mind. It is important to first understand how the mind works so that we can learn to control it through various practices.

She ended the program with a deep breathing meditation. Towards the end of the meditation, I had another "out of body" experience, where I actually could not catch my breath. This is the second time I was in a group meditation where I seemed to "pass" to the other side. I was actually startled, but brought myself back into reality. I cannot explain why this keeps happening, but I know that everything I experience is for a reason.

The evening's lecture and the day's classwork was my first real introduction to the concept of yoga. The literal translation of Yoga is "Union with God" or the "absolute state of consciousness."
Generally, there are seven psychic centers or chakras. They are located at the base of the spine, naval area, spleen, central upper body adjacent to the physical heart, the throat, middle of the forehead, and the entire scalp area.

Each chakra relates to certain stages of consciousness. Thus by more fully activating each chakra, the mind grows in awareness.

The basic idea is that this psychic center/chakra, and what is referred to as "kundalini" or life force, is released from the base of the spine and travels upward through the center of the spine. At that point it activates a psychic nerve flow along the outside of the spine in a feminine/masculine surge of psychic energy.

As this life force rises up, it activates each chakra into greater activity, bringing a new level of awareness to the human mind. For most people, this activation takes place one center at a time. But activation of all centers may be experienced all at once...bringing total mental enlightenment to the one having the experience.

This has opened up a brand new world to me...and I am interested in learning much more about each of the major yoga systems, including Bhakti, Karma, Jnana and Raja Yoga. Between my studies, I will research several yoga centers to find out what is best suited for my life.

Until next time...God bless!

Six Days Until the Half Marathon

2008-04-28T19:46:00.004-04:00

In just six days, "Lisa's Run for Myositis" will become a reality. As I had written in a previous blog update, local Long Island runner/friend Lisa Korcz has taken on the challenge of the Long Island Half Marathon on Sunday, May 4, 2008 at Eisenhower Park in East Meadow, New York.

What sets her personal run apart from the thousands of other runners that day is that she is dedicating her entire run to The Myositis Association in my honor! All proceeds will go directly to TMA to help those, like myself, live longer, healthier lives.

It is not too late to donate to the cause. Her goal is to raise $1000, but she still needs your help in achieving that magic number. If you can help, please click on this link to donate:
http://www.myositis.org/community/campaign.cfm?id=3434

While I am currently in remission for Polymyositis, I am still fighting for my life each and every day. Research shows that the mortality rate after several years of the disease is approximately 15%, which reflects the higher rate of mortality in patients with connective tissue diseases, (which I have) cardiac involvement or cancer.

Very little is known about this rare condition and there is little or no money for research. But with your help, we can fund research projects and hopefully one day find a cure.

My family, friends and I will be cheering Lisa on this Sunday...loud and strong. We'll be wearing our t-shirts and carrying our signs. Wouldn't it be wonderful if we sparked just a little interest that day from the crowd and the media about Myositis? One can dream, can't one?!!

Unfortunately I haven't been feeling well the last few days. I am getting weaker and weaker, but I am trying to fight it with everything I have. I actually went in the pool this weekend, as I cranked the heat up to 89 degrees. It felt wonderful getting into the water and doing my exercises. There was no pain as I swam six laps from one end to the other.

It is so cold and raw out today, and the weather will not be conducive to taking another dip for quite some time. So I will take it easy with hopes that the pain in my joints calms down.

On a high note, I was contacted by a wonderful Long Island woman who recently found my blog. She also was diagnosed with MCTD and has not been able to find any answers. Her story has touched me deeply, and I will do everything in my power to help her. May God bless her and her family.

I made a decision this weekend that I have to go back to my schoolwork full time. I am proud of the fact that I finished my ministry studies, but my goal is to complete my doctorate in one year from now.

I spent the entire morning reading the second chapter of my book on the Metaphysical Psychology of Consciousness. It was fascinating to read and realize that my personal experience two years ago, in finding metaphysics and being touched by God, was actually a form of being "born again!"

I quote, "An individual is mentally reborn through a direct experience of what can only be described as a Divine Consciousness when compared to the usual conscious life activity of the average person."

The experience of the innermost state of mind provides a person with the greatest life transforming power in one's life.

It is true! When I was lying in bed one morning, unable to do anything for myself , I decided that I was ready to give up. I honestly did not want to live another day. How could I go on, being totally dependent on others? How could I live without the use of my arms, legs and my brain?

Just then...something happened. I had a revelation of sorts! Someone was there with me, guiding me back to my life. I was, at that point, one with God.

The energy in my bedroom was intense. Even though I experienced this "oneness with the universe" for only a few seconds, it is the major influencing factor in why I am still of this earth and now an ordained minister.

I was able to personally identify as to why I am here...to live life more productively and to help others find inner peace and, most importantly, their true identity.

I have learned that The kingdom of heaven is not an afterdeath experience. In fact, it is here and now.

The kingdom of heaven is a place within each of us...a place to become one with God.

Little Goldie Returns Home, For Now!

2008-04-22T21:51:00.013-04:00

I received an interesting phone call from the training facility where Little Goldie has been going to school for the last month. They explained that her brain is full and she is exhausted. So, they have to bring her home for a few weeks to get some much needed rest.

I printed a "Welcome Home" sign and posted it on our front door!

When Kimberly, the trainer, pulled in front of the house, I ran to the front door. Would she remember me after being away for a month? Did she grow?

Our ball of fur ran so fast thru the front door that no one had a chance to exchange hello's! But within seconds, we all witnessed her total transformation.

This hyper pup was now a well-behaved young lady. She is in control of the basic commands such as heel, sit (with implied stay), come, place, off and leave it. In addition, she is being trained as a service dog so she is familiar with fetch, give and paws up.
The trainer explained that she can walk off leash and that she had her walking in the mall. Because she is now a trained service dog, I am able to take her everywhere with me. In fact, the owner of the training school has ordered Goldie her very own service vest!

I understand that Goldie will test me for the next several weeks, but I promise to be patient yet stern. And I also understand that she had to come home for a month in order for her to reach her full potential. Goldie will return to Best Friend's Dog Training as soon as she is fully rested to complete her service dog training.

I am so very proud!

Conducting the "New" Sedar

2008-04-22T21:06:00.007-04:00

Each year, Jews all around the world commemorate the holiday of Passover--the Exodus from Egypt. We relive the story of our escape from bondage and oppression: the liberation of the Israelites from slavery.

Because of circumstances beyond my control, my entire family would not be celebrating Passover together, and I felt it was the "right time" to start a new tradition. It is true that Passover is a time to celebrate spring: a time of renewal and rebirth. What better way than by conducting our very own sedar?!

The first night the four of us (including Mom) were invited to our friends' Joanne and Kristen, to share their family sedar. We ate and ate and ate, until we could eat no more! It was a wonderful evening. We laughed and shared family traditions.

But the second night, I conducted our first ever "Women's Sedar!" This sedar was different from our family's past sedars because the blessings were said in the feminine form. Overall, everyone at the table enjoyed this new sedar. I think it was lacking some of the more traditional prayers, so I will work on meshing the two together during the year.

In fact, I would like to propose to conduct a woman's sedar for a group of Long Island woman next year! Wouldn't that be fantastic?
Mom and I spent most of the days before the holiday shopping and cooking. It is a lot of hard work, but in the end, it is well worth it!

I am not sure what my Dad would have thought of the sedar overall, but I am certain he is proud of me for stepping in and doing the right thing.

It is important to continue family traditions. It is the foundation for everything I have grown to be. And for that, I am truly thankful.

Happy Passover!

Ahh..A Good Night's Sleep

2008-04-16T09:58:00.005-04:00

A recent survey found that more people are sleeping less than six hours a night. The major concern with this fact is that chronic sleep loss can contribute to health problems such as a decrease in the power of one's immune system.

Truth be told, I haven't had a good night's sleep in years. Not only don't I sleep through an entire night, but I have been taking sleep aids as well.

The doctors contributed my inability to sleep originally to loss of hormones from my hysterectomy back in 1998. Then when I was diagnosed with MCTD/Polymyositis, they said it was due to my illness.
No matter what the reason, I have been taking ambien and other sleeping pills far too long.

It is a fact that the effect of sleep on the immune system affects one’s ability to fight disease and endure sickness. So I cannot be "helping" myself to heal if I am not allowing my neurons, located in my brainstem, to "naturally" allow me to sleep.

I read that sleep deprivation results in a decrease in immune system function as measured by one's white blood cell count. That is not good! Especially for someone with my health condition.

Last night I decided that I was going to try and fall asleep naturally for the first time in years. On Monday I met with my rheumy, Dr. Rumore, and he wasn't too happy with my sleep habits. It is true that if I am fighting each day to stay in remission, that not only do I have to exercise, but I have to sleep.

Guess what? I did it! I got into bed and watched the news like I always do every evening. But this time, I just closed my eyes and fell asleep. Without any drugs!!! I feel a bit sluggish this morning, but I am so relieved that I was able to sleep naturally for most of the night.

At this point, I will take it one night at a time and not put any stress on myself. It will take awhile for my body to adjust, but if I stick to my promise of exercising regularly, my body will tire naturally and crave sleep.

We are opening the pool next week...hooray! There is no other exercise that compares to the workout I get in the pool.

According to my doc, he said my bloodwork was good...but had some minor changes. However, it is not significant enough to restart the Rituxan at this point. If I am still having joint pain in a few months, he can prescribe a new drug to specifically address that issue. (If I could only take anti-inflammatories! But I can't...I am allergic!)

The doctors are all in agreement that I must now reduce the Imuran by 25 mg. per day. This immunosuppressive has been both a positive and negative for me. It has kept me going for quite some time now, but it also has held me back.

One major concern is if my health starts to spiral, will it be because my body is just weakening or because I lowered the Imuran dosage? Hmmm...?

I need to take the risk.

At this point, I am still exhibiting many signs of the disease process including swollen fingers, arthritis, muscle/joint pain and inflammation, and fatigue, and memory loss. But I must say that my short term memory has vastly improved. I am going for a repeat of the NeuroTrax test next week, so those results will give us a clue as the what is truly happening in my brain!

Oh yes...the human body is a complicated machine. But we must do everything we can to keep it running in tip-top shape.

Most importantly, one must get a good night's sleep. Sleep is a basic human need...just as important as exercise. And when you get a good nights sleep, it allows your mind to become strong and healthy as well.

The aim and goal in life is to live life more productively with greater mental participation. And the key to understanding the workings of the mind lie in the experiences of a person's innermost mind.

Remember... "There is but one mind in the Universe. All minds are inseparable from the one great mind. All so-called individual minds are individualized expressions of the one great mind."

A person can become a better, more aware individual by listening to that "higher inner mind."

So get a good night sleep, and allow your mind to gain a personal sense of identity. This will ultimately allow you to adjust to all of the changes occuring around you each and every day.

I know that I will try my best to heed my own advice!

Peace out!

Always and Forever

2008-04-09T14:16:00.004-04:00

April 6, 2008. A day that was like no other.

Perfection.

Total bliss.

Pure love.

It was the day my soulmate of eight years and I exchanged vows. The day of our 'holy union.'

I am still floating on cloud nine. Every single person told us that they could feel the love surrounding us all day.

Words cannot express what is running through my head. (Can you believe that I am speechless!!) LOL

From the instant I put on my gown, to the moment my eyes met Sally's for the first time that morning, life has changed.

Standing at the altar, exchanging vows, placing the rings on each others finger, drinking the wine, participating in the sand ceremony...OMG! And when the crowd yelled "Mazel Tov" after I broke the glass, it was amazing!

I asked Sally if she felt that "something" had changed for her halfway through the ceremony, because I felt a sensation...like someone had opened up a new door for us to enter. She totally agreed. We looked at each other like never before. The total love that we have for each other has grown even deeper, even though I thought that was totally impossible.
The way we were looking at each other, whispering "I love you" to one another, over and over again as the minister read. My heart was so full it felt like it was going to explode.

Whenever I caught a glimpse of someone in the audience, they were beaming from ear to ear. There was not a dry eye in the room!

Even though there was a definite chill in the air outside on the water, it did not rain the entire day. In fact, the moment that Sally and I stepped onto the dock for pictures, the sun broke through the clouds right above us. We both smiled and said that Dad was definitely with us, shining down upon our union.

The day was unforgettable...from the gigantic white limo, to the attentive staff, exquisite food, funky music, crazy/fun moments...it is a day that I will never forget. And, I administered my first blessing as an ordained minister!

Our good friends Pete and Eric performed during the ceremony. Eric has been blessed with a voice from heaven above. And our friend Drea sang a tune off of her newly released CD during the reception. How cool is that?

God truly blessed the two of us with the most wonderful friends and family in the world.

Sally's Mom, Suzanne, and sister, Monique, flew in and spent a few days with us, and I am thankful that we truly got to know one another. We have so much time to make up for, and I am looking forward to that!

My beautiful Mom, Bernadine, well...I am the envy of everyone I know! I am the luckiest daughter in the universe!

Our son Jarrett...he made us extremely proud. He looked so dapper!

Our bridal party...gorgeous! The best!

To everyone who supported us...we thank you, from the bottom of our hearts. We love you. Always and forever!

Two Days and Counting...

2008-04-04T14:16:00.003-04:00

Where does the time go?

In just two days, my beloved and I will be "tying the knot!" We have been talking about this for so many years, and it is almost here! And our "holy union" will be witnessed by our closest family members and friends, who will be there to celebrate and support us.

Been running around like crazy for the last few days tying up loose ends. There have been some major disappointments, but I have learned to take them in stride.

I realized that one must count on oneself first and foremost. And you must stay true to yourself as well. No matter what anyone says or does, it should not discourage or stop you from believing in what is right.

Stick to your guns. Let God show you the way. No matter what!

The family has been flying in and driving in to the area, and I have received so many wonderful phone calls and emails wishing us the best from friends and family. It is a blessing to feel all the love and support we are receiving. Who would have "thunk" it?

God has blessed me in so many ways. And I am so thankful that he brought Sally and Jarrett into my life.

I am also so thankful for modern technology...the internet specifically. If it wasn't for LOVE AT AOL, I may not have found my soulmate. Even though I know we were destined to be together.

On another note, I am feeling totally exhausted. No suprise though! I did receive a call from my neurologist's office saying that I need a new NeuroTrax study to see if things have improved. Last year the results showed some changes in my brain which were supposed to be due to my illness. I know that my long term memory is still very bad, but my short term memory has greatly improved. I am anxious to find out what the new test proves in the long run!

Gotta run. So much to do, so little time!

Deep breath...ahhhh! On to my new life with my family. My wish has come true!

Till next time! God bless you!

FFFFFifty!

2008-03-30T21:53:00.004-04:00

The big 5-0! Half a century! Ten times five!

Fifty is the smallest number that can be written as the sum of two squares in two distinct ways: 50 = 12 + 72 = 52 + 52. It is also the sum of three squares, 50 = 32 + 42 + 52.

Fifty is the atomic number of tin, and the fifth magic number in physics.

And let's not forget there are fifty states in the good old USA!

Since my diagnosis three years ago, I honestly did not know if I would be around to celebrate this milestone birthday. But thanks to God, my doctors, my family and friends, I had a great day!

Sally, Jarrett, Mom and I hopped the train in Babylon to NYC on Friday afternoon, and I was treated to a night on the town. We had a wonderful dinner at Tony's Di Napoli Restaurant. Even Barbara showed up to celebrate with us!

The service was first-class, and the waiter serenaded me with an operatic Italian version of 'Happy Birthday!' It was one of the best eggplant parm dishes I ever tasted! (Even better than mine!)

The four of us proceeded to the Hilton Theatre to see the new Mel Brooks musical "Young Frankenstein." OMG...it was soooo funny! And the pyrotechnics were amazing!

Then, on Saturday afternoon the celebration continued. A bunch of my closest friends surprised me at Milk and Sugar in Bay Shore. We had a wonderful lunch and the cake was to "die for!"

Our bridal party also surprised Sally and I with pre-wedding gifts...all Lenox pieces to use at the commitment ceremony. (Champagne glasses, knife, guest book, etc.) They are absolutely gorgeous!

Overall, I am one lucky lady...in many, many ways. And I will be eternally grateful that I was given the opportunity to celebrate another birthday.

I was given a second chance at life. I have achieved so much, and I promise to continue on...full speed ahead.

The Reading, The Truth

2008-03-25T07:26:00.004-04:00

The sun is shining through the blinds in my office...softly brushing its warmth upon my face. It is still quite early, but I am up and writing.

So many things have been running through my mind since Friday's reading with Daniel. I have been trying to digest it all!

What an amazing human being. So gifted. He confirmed so much of what has been unending questions in my mind. He also brought closure to an issue that has been haunting me for three years.

My reading was done on the first full day of spring, during a full storm moon. The sun was in Aries, moon in Libra.

The universe unfolded in front of me...as it knew what needed to be said.

The vibe said I know myself like never before. And others recognize it and will become catalysts for me in my work.

The energy vibe challenge has been helping me to grow. I will prove to be unstoppable. While others around me are changing, I must remove/weed out certain toxicity from my life. This will ultimately represent great strenghth as I dynamically move forward.

For quite sometime, I have been in suspended animation...evolving at such a rapid rate. As I get older, I continue elevating...moving closer to the devine. This is what is connecting to inspire me.

Awesome, hmmm? And that was just the beginning.

Daniel said, 'It is always darkest just before dawn.' My challenge is now.

I seem to have a lot of past life energy...I am an old spirit ship. Each day I connect with something different, some other time. It inspires me...in the theatre of dreams, tapping in to octaves from other lives.

Most amazing is that he told me I am "Divinely inspired." This comes from a high metaphysical state. Guess I know why I am pursuing my doctoral degree in metaphysics!!!

He mentioned that quite often when "Dis-Ease enters in our life, it opens channels and doors." And he was correct!

Most astonishing is this statement...."As in heaven so on earth...my mind communicates to my body. From my soul, it is dealing with a great eclipse. This block has moved in front of the light. However, eclipes are temporary...my bright light that eminates, is blocked. We know it is not a permanent block. This disease is only a shadow that will keep moving, and if it returns, it will only be temporary again, just like an ecplise!"

Good validation, eh?

I must continue to orient myself to the future, for it is bright. The past no longer matters. I have navigated through this epic. Life is about healing and continually elevating.

God is truly with me. And just this small part of my reading that I shared with you proves that I am ultra connected to something metaphyscial.

A coincidence? I think not.

Spring: A Time For New Beginnings

2008-03-24T18:00:00.008-04:00

It's spring. Time for new beginnings.

The bulbs are starting to peek from under the thawed earth. A full moon fills the evening sky. It is the time of year to start anew--a rebirth of sorts.

Life is extremely hectic, but you must remember to take a step back and breathe. Take in all the sights of this new season. Let the rays of the sun shine brightly upon your face. Just close your eyes...you can do it!

Less than two weeks and counting until the big day. The nerves are beginning to set in with all of the pressure, but I must heed my own advice. Overall, I feel pretty good. I do find myself tiring by mid-day lately, but I have made a conscious decision to try and retire a bit earlier each evening.

Little Goldie is off to "boarding school" for three weeks. She left last Thursday, and let me tell you...it was an emotional time. Right before she was picked up, Dylan and I spent some quality time with her. I even sat her down and explained why she was leaving for awhile...I guess it was to reassure myself that all was for the best.

Besides reinforcing basic obedience, the trainers are working with her to become a service dog. In reality I know in my heart that my remission status could change at any time, and I need all the assistance I can get. Goldie will walk off leash at all times, learn to hold, pick up and walk besides a wheelchair.

I miss her like crazy. But in a few weeks, my little girl will be home with us and able to lead a much more productive life with us.

Goldie leaving for boarding/training school

This weekend I went for my annual reading. With all the craziness surrounding my life, I wanted to seek out answers to many unanswered questions.

After meeting Daniel a few weeks ago at the metaphysics meeting, I knew I could only see him. It was an amazing experience--one that truly reinforced my strong drive to serve God.

I promise to share some of the highlights in my next blog update. But for now, remember to take a moment for yourself. You deserve it!

A Bachelorette Party!

2008-03-16T13:36:00.006-04:00

Last night my closest friends surprised me with a "bachelorette party" at a local restaurant. I knew it was happening, but I had no idea what we were doing or where we were going.

Sally had given me a special t-shirt to wear for the occasion, so I was prepared! Or so I thought!

Dawn and Pat picked me up at the house and drove to Amityville. They parked the car and we walked into an unfamiliar place...but I did see a large table filled with friendly faces. In fact, some faces that I was shocked to see!

Immediately I was given specific attire to wear for the evening. It included a baseball cap that said 'bachelorette,' a flashing 'bride to be' pin, a sash and an enormously heavy plastic diamond ring. I was told the ring I received from Sally didn't have a big enough diamond in it!

The first thing I did was make my way around to each and everyone at the table to thank them. I felt such a warm feeling...the love was there in layers!

Needless to say, I had a few drinks. Yes...I know...I don't drink. But what the heck! I felt no pain!!! ha, ha

After the wonderful meal, lots of photographs and tons of hugs, a few of us proceeded to our next destination...BOWLING! Yes, bowling! But this was no ordinary bowling alley. It was a nightclub, filled with flashing lights, loud music and lots of laughter.

I had a fantastic time...and it will be a night I will always treasure in my heart. I am truly blessed with the best friends on this planet. And for that, I am eternally grateful.

Three weeks and counting. Oh my!

Friday Night's New Experience

2008-03-09T01:36:00.006-05:00

I recently read an article citing The Eyes of Learning, a Long Island-based metaphysical study group. Of course I had to check out this group since I am pursuing my doctoral degree in metaphysics!

The Eyes of Learning, which was founded in 1983, meets several times a month at Levittown Hall in Hicksville. Friday night's program was entitled "Meet the Psychics," so I did!

I called Noah earlier in the day to see if I could borrow his ark, just so that I could safely travel through the torrential downpour to my destination. Unfortunately, it was in the shop for minor repairs, so instead I hopped into my convertible, with the top up...silly! My soul sister, Dawn, took the ride with me...and it truly was an adventure trying to avoid the large potholes covered over with minor streams from the floods!

Upon arriving at our destination, we were informed that the large room that is normally used for meetings was taken by a local boy scout troop. Unfortunately we would have to fit like sardines, in a small room, and the program had to be changed.

Originally the workshop was advertised as a "get up close and personal" with the gifted readers. We were supposed to sit in small groups and ask questions. However, that was not feasible.

In the standing-room only workshop, three very different individuals spoke about their practices and evoked questions from the crowded room. Very few lucky participants received personal readings, but they were very informative.

There was one very uplifting time for me during the evening. A master psychic/artist/spirit communicator, Daniel Akner, was introduced to the group. Immediately you could feel the vibration in the room turn around.

He began my cleansing the air with three very specific aromatherapies, including pure orange extract. Daniel then proceeded by filling the room with light background music and asked us to meditate as he read something he specifically penned for that evening.

Within minutes, my body and mind were one with the universe. I felt so relaxed and at peace, and I didn't want the moment to end. I truly miss group meditations. Meditating individually is fine, but a group of minds meditating all at once is truly uplifting. The energy in the room is so electrifying.

Daniel shared some personal information about himself, as well as a selection of some of his paintings. There was something "special" about Daniel...a true metaphysical connection...but he read everyone around me, never making eye contact with me.

I so desperately wanted to ask him about my recent remission miracle, and about my new path into metaphysics. But the time was truly getting late, so I took his business card with the hopes of reaching out to him one on one. In the meantime, I am going to try to attend several future events where he will be speaking...including The Spring Festival For The Eyes of Learning on April 27th.

Daniel's knowledge of metaphysics, his use of crystals, aromatherapy, affirmations...are the direction I am heading at this time in my life. Perhaps he is someone that can work with me in achieving my goals as a metaphysicist and minister to those with chronic illnesses.

Time will tell. But for now, I feel blessed to have crossed paths with Daniel.

Until next time...Peace and love to you.

I Am Truly Blessed

2008-03-07T16:21:00.004-05:00

Thank you, almighty God, from the bottom of my heart for all of your blessings.

I am sitting at my computer in tears. Now don't get upset...they are not tears of sadness. They are happy tears.

My life has totally changed since I have been touched by God through my illness. Letters are coming in, weekly, from people all over THE WORLD, thanking me for this blog. (Just take a peek at the comment after my last blog entry!)

And now that I am officially an ordained minister, I will continue to support people to the best of my ability.

Today I took the first step towards establishing a ministry, something that I hope to fully achieve once I receive my doctoral degree. The timeframe is at least a year or more at this point, but I can wait! I know time is of the essence when you are ill, but God is looking after me.

I received an email from someone associated with The Myositis Association, asking me to attend an event two days before my 50th birthday. This dinner will open me up to meeting people who are at the forefront of the fight against this horrific disease.

Can there be a better way to help support others with this disease, along with their families, if I meet the leaders in our fight? Absolutely not!

It is my goal to minister to those afflicted with myositis, and their loved ones...with the hopes that together...we can beat this thing.

We need the monetary support, of course, that goes without saying. And thanks to people like Lisa Korcz, who is running the Half Marathon on my behalf, people are starting to listen.

But we specifically need the support of the US government and its leaders to fight for funding for much needed research, and to get the pharmaceutical companies on board.

Yes...we need to take it one day at a time. One foot in front of the other...just like I have been doing each day since my diagnosis. But with God on our side, we can't lose!

Lisa's Run for Myositis

2008-03-04T01:17:00.006-05:00

Last year, my friend Trish introduced me to an attractive, fit young woman named Lisa Korcz. Ms. Korcz has been working in the fitness industry most of her life, and was interested in hearing my band play.

After meeting her several times at various gigs and parties, we finally got to speak heart to heart, and I relayed the story of my illness. My story seemed to touch her deeply. There I was, a former athlete, now helpless because of an incurable muscle disease. Truth be told...it can happen to any one at any time!

There I was...a woman who once played professional tennis...played high school tennis and softball, and made my college softball team as a freshman...using a cane and/or wheelchair to move around.

There I was...dependent on others for my daily living. I couldn't drive, or dress, feed or bath myself.

There I was...a former bodybuilder who relied DAILY on her strength...both mentally and physically...and could no longer raise her hands above her head.

Lisa saw something in me that brought it "home" for her. She is also an extremely athletic woman who could never imagine being "struck" with a debilitating, incurable muscle disease.

A few months ago, Lisa approached me and stated that she wanted to help educate others about myositis, and raise money for research. After talking to a representative at The Myositis Association, we set up a page so that Lisa can reach her goal.

Lisa has taken on the challenge of running the Long Island Half Marathon on Sunday, May 4, 2008 at Eisenhower Park in East Meadow, New York...dedicating her run to The Myositis Association. All proceeds will go directly to TMA to help those, like myself, live longer, healthier lives.

Thank you Lisa, from the bottom of my heart, for dedicating your run to a very worthwhile cause. May God be with you as you train, and lead you through to the finish line.

If you'd like to make a donation or read more about Lisa's Run for Myositis on behalf of me, (for which I am truly humbled), please click the link below:

http://www3446.ssldomain.com/myositis/community/campaign.cfm?id=3434

Thank you and God bless,

"Rev" Bev

Where Did the Day Go?

2008-03-04T01:00:00.002-05:00

I have been busy scrambling to get the "little" things done before our big day. The photo montage is taking me a lot longer than expected. I guess it is that "perfectionist" inside of me!

We had some serious issues with our electricity over the last few days, and the electrician finally showed up today to investigate. Two hours and over $300.00 later, nothing was resolved. Our electrical panel has power, but certain sections of the house are without total power.

A few hours after the first electrician left, I received a call that another one was on his way. Within five minutes, he figured out the problem. One of the electrical outlets in the master bedroom had shorted...so bad that it had melted. He told me that if the second wire had caught fire, instead of the first one, that we would have lost our home.

God is definitely watching over us.

I received a great piece of news last week from my rheumy in NYC. Dr. Spiera said, "You are in total remission!" TOTAL REMISSION! Hallalujah! He feels that I should try to live a normal life for as long as I am able. However, if at any time I feel weak, I must contact his office and schedule another chemotherapy treatment.

It has been 8 months since my last Rituxan treatment, and both docs feel that I can go at least one year, possibly two. Wouldn't that be wonderful? A true blessing!

Speaking of blessings...I received a letter from the International Metaphysical Ministry 'congratulating me on passing my Minister course study exams.'

The next step was to take my vows, which I did with my family by my side. In a few weeks all of the legal paperwork should arrive so that I can register at City Hall to become a marriage officiant in New York. In the meantime, I am continuing my studies towards the doctoral degree.

Lots going on--the clock is ticking away. This month will fly by...so I need to S-L-O-W the pace down a notch.

Breathe in...hold it...release. Repeat.

Ahhhhhhh!

STOP THE HATE

2008-02-29T12:31:00.007-05:00

Dearest Friends,

I have never written about anything other than my life on this blog until today. I have been jarred emotionally by a recent incident in the news. It has angered me and moved me to tears--but it is crucial that each of us take this opportunity to make a difference in the upcoming election.

Lawrence King, a 15-year-old boy from Oxnard, California, was shot twice in the head during class at E.O. Green Junior High School on February 12th. He was declared brain dead and taken off life support three days later.

Larry King

Why was he murdered by another student, 14 year-old Brandon McInereney?

Friends say it was because of his sexual orientation and gender expression. "Larry" was reported to be openly gay, and sometimes attended school wearing make-up and jewelry.

Brandon was one of many students who were known to bully and harrass Larry. He has been arrested and charged with the murder. Ventura County prosecutors have said the murder was a "premeditated hate crime."

Another hate crime? Wasn't it just ten years ago that we witnessed another horrific murder of a young Wyoming teenager, Matthew Shepherd, because of his sexual orientation?

Hatred. Ignorance. Violence.

There is no room in this world for those three words. We can no longer tolerate these violent acts upon our young children.

We MUST enact a federal hate crime law to ensure the safety and freedom of ALL of the GLBT community. No if's, and's or but's about it. Hate crimes cannot be tolerated at any level...EVER.

All of us are children of God, no matter what our color, religion or sexual orientation. The US government must make it mandatory to hold classes, with NO exception, on tolerance and diversity. This should also be a mandatory part of a company's orientation to a new employee.

Young people desperately need our direction and guidance to prevent hate crimes from happening over and over again. Please, friends--mothers, fathers, teachers--I beg you to PLEASE educate our children about acceptance, understanding and compassion.

As a minister, let us pray for Lawrence "Larry" King and his family.

"Divine Presence of our Creator who is here with us and within us, lighten our sadness at this moment with the joy that as you are always with us, and as Larry is with you...so spiritually and in truth we all live together within you."

"And that death is but the temporary parting from the eye, but not from your presence which contains us all. For this realization of Truth to lighten our sadness and spiritually dry our tears with peace through your spirit...we do give thanks...Amen."

"Divine Father of Light, Goodness, and Truth, I call upon your Holy Presence, within us, and about us...that as we light this candle, with the candle representing Your Universal Spirit, that your spirit light be with Lawrence King giving strength, peace and love, and assurance in the continuance of his life beyond our physical presence."

"In the spirit of truth and goodness, we ask this in your name, and in faith we accept that SO IT IS."

(Moment of Silence)

May the King Family receive guidance, from the God within them, to remove sadness which they feel. Let the healing of God's love be greater in them than the loss that they feel.

Ellen Degeneres said it best during her segment today. Please click below:
http://www.tmz.com/tmz_main_video?titleid=1437079313

February Winds Down, But I Don't!

2008-02-20T11:55:00.013-05:00

Wow! I cannot believe there is only one week left in the month of February. We actually had some snow last week, but it only lasted a day due to the amount of rain the NY area has been incurring.

Dylan watching the snowflakes fall!

The temperatures have rollercoastered from the low teens to the upper 60s. Global warming? It definitely is weird!!!

I have been extremely achy all over, but my mental state has been amazing through everything, thanks to my studies. I completed my ministry courses and mailed them out, registered receipt. I spoke to a representative at the university who said it may take a month to receive my grade. In the meantime, she advised me to continue working on my master's degree.

I've taken a brief hiatus from my studies...for a week...to go over tax stuff, get last minute wedding plans in order, and to just relax. Of course, that is impossible with the April date so close. We did meet with the bakery to order our cake...it will be gorgeous!

My Long Island rheumy, Dr. Rumore, gave me a great report the other day. My bloodwork results for January looked fantastic! My CK levels are 77 and aldolase is 3.5! 3.5...yahoooooo!

I also had an appointment with Dr. Ruisi, the cardiologist, for a check up. His office staff couldn't believe how great I looked, and he also was extremely pleased with my health status at this time. I don't have to return until August!

Tomorrow is my appointment with Dr. Spiera in NYC, and I have many questions regarding my inability to sleep, despite the ambien. Dr. Rumore thinks it could be the pain I am in, so he suggested taking Tylenol along with the ambien. Maybe it is also hormonal, or lack of hormones. Let's see what Spiera thinks.

Sally's birthday was a three-day affair this year! I made a wonderful Valentine's/Birthday dinner on Thursday for the three of us.

We went out to Gasho of Japan with friends on Friday night, which was a very interesting experience. This particular restaurant recently opened, and they obviously didn't have their acts together just yet! But we made the most of it...laughing the entire time!

(Back) Dan, Eric, Ceil, Liv, Bev (Front) Ann, Joan & Sally

Catch the flying food! (Not too embarassing, eh?)

We ventured out later on that evening to Dave and Buster's for some fun and games. Sally and I competed in a very serious game of air hockey. We really get competitive! Yikes!

Not too competitive, are we?

On Saturday, Sal's gal pal Marjory took us out for seafood to celebrate yet again. Not bad, eh?

We also celebrated our little Goldie's first birthday! I cannot believe she is one! Where did the time go?

Goldie jumps for her "lit" birthday cookie!

This upcoming weekend will also be crazy! Mom is meeting me in NYC, and will drive us back to the island. She has to get her dress fitted, we are going to the florist to pick out the flowers, hopefully looking for shoes and finally I am having my hair styled on Sunday to get an idea of what I want it to look like. Oy vey!

Guess what? I actually found a metaphysical group out of Hicksville! I have been looking to meet with people who are also practicing metaphysics as part of their lives, and I am attending a meeting on March 7th.

The most important thing, right now, is staying on track with my health. My positive attitude and daily meditation will guide me in the right direction.

Another Furr Baby Passes On To Rainbow Bridge

2008-02-13T23:58:00.002-05:00

My best friend Dawn called to say that she knew it was definitely time to say good-bye to her 14 year old dobie mix, Cleo.

Dawn asked me numerous times over the last few months when she would know, without a doubt, when the time was right for euthanasia.

From my last two experiences with Casey and Kandie, they both let me know in their own unique ways. While my rescued 3 year old golden retriever Kandie lay on the floor at home, just two days after being released from the hospital, I asked her if she was ready to go. She slowly raised her head up to make eye contact with me, and placed her right paw over my clenched hands. At that moment, the song "Angel" by Sarah Mclachlan came over the airwaves. That was my sign.

Less than seven months later, Casey, my rescued 7 year old golden retriever's health quickly deteriorated. This time, I refused to be the hero as I didn't want to put him through any more than he could endure. He fought to be there for me through Kandie's passing, but he could hang on no longer. His sad eyes locked with mine, and we hugged for a very long time. That was the sign I was looking for. My best pal and I shared a final lunch of McDonald's french fries together on the back porch. The wrenching pain I felt upon his passing is something I will never forget. He was closer to me than any human on this earth.

In both cases, I was blessed to have found the most wonderful vet to administer the medication to help my fur babies find eternal peace. She had a room set aside with the lights dim, blankets on the floor and no other patients in sight. She explained everything, step by step, and stayed with us through the entire procedure. We cried, laughed and told stories...and she never left our side.

To see my loving fur baby pass peacefully to Rainbow Bridge was an experience I will never forget. I realized there was no reason to fear death, and that experience ultimately helped me deal with my Dad's passing just two years ago.

Euthanizing a pet is one of the most difficult decisions a pet owner can ever make. I accompanied Pat and Dawn to our local vet yesterday after the final decision was made, not to allow Cleo to suffer any longer. She was a fighter from the very beginning to the last moment of her life. Very courageous, loving and sweet.

The three of us stood around Cleo, reassuring her that everything was going to be alright, and that it was time to go to sleep. It was extremely emotional for everyone, but I stayed as strong as I could be for my friends. Since I am formally training to be a minister, it was the perfect opportunity to offer prayers for Cleo. I also tried to guide her to the afterlife, petting her head and closing her eyes.

The vet first injected a needle with a medication to relax Cleo so she wouldn't be agitated and nervous. Within a few minutes, her breathing slowed down and she seemed "out of it." The doctor returned with another needle to actually perform the euthanasia. He inserted the needle in her right paw, the one closest to the heart. The injection worked extremely quickly...as she passed with no reactions, just one sigh.

I feel blessed to have been part of Cleo's life and to be present at her passing. In Metaphysics--Whenever one whom we have dearly loved and cared for passes from our physical sight, we should think that they have passed more into God's sight. In this thought, though saddened by our loss, we should be gladdened at the gain of the one who has passed on before us.

The following is a special poem that has always helped me with the grieving process after I've lost a fur baby. It says it all!

Rainbow Bridge
Just this side of heaven is a place called Rainbow Bridge. When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge. There are meadows and hills for all of our special friends so they can run and play together. There is plenty of food, water and sunshine, and our friends are warm and comfortable. All the animals who had been ill and old are restored to health and vigor; those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by. The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind. They all run and play together, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent; His eager body quivers. Suddenly he begins to run from the group, flying over the green grass, his legs carrying him faster and faster. You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.

Then you cross Rainbow Bridge together....

(author unknown)

Inspiration and Creativity Equals An Open Mind

2008-02-11T15:50:00.000-05:00

Last week was extremely busy, but I put my nose in my ministry books and never looked up! I am so fascinated by the teachings that I seem to have a one track mind at the moment!

I knew a few years ago...probably a year or so into my illness...that I needed to change my life. I am not only referring to my way of life, (the long hours, sacrifices, anger, stress, plus giving my all to others instead of myself), but that I needed to change direction.

I realized that all it takes to change one's life is ONE creative idea. This idea will ultimately bring you intuitively into line with your own individual purpose for being.

You see, when you are told you have a rare, incurable disease...your life changes immediately. Things are put in perspective. You take each day...one moment at a time. You take nothing for granted.

Lying in bed for several months put my mind in a totally different hemisphere. All of a sudden being totally dependent on others for life's daily necessities--eating, going to the bathroom, etc.--was a scenerio I never imagined, much less had to actually experience/live daily.

But this "down time" also brought me to another place...one of peace and contentment. I let my mind be open...allowing creative thoughts to enter. I also paid close attention to the content of my dreams, which I soon found out to be God's way of directing me.

So many times, despite the pain and depression, I felt inspiration deep within my soul. Like a feeling of knowledge that I needed to pursue a particular direction.

It was through creative inspiration and an open mind and heart, that I found metaphysics. Each day I allow God to inspire my thoughts...allowing ideas to flow freely into my mind.

As a student of metaphysics, I am studying the philosophy that investigates principles of reality transcending those of any particular science. I am trying to understand things that are beyond the physical world.

Currently I am trying to have a sense of control over my life. This can be accomplished by taking away the daily demands of my life from the personal part of my mind...giving total control to God.

Keeping a positive mental attitude and knowing that I am not dealing with lifes ups and downs on my own, helps me keep control in my life. This control can ultimately bring me peace and happiness overall.

To this day, I never allow myself to be limited by my illness. When an idea comes to mind, I don't dismiss it. Instead, I talk about it with loved ones, and allow God to guide me.

Last week I auditioned for a contemporary a capella group, something I never considered before. It would use all of my former musical reading knowledge, and challenge my vocal ability and skills.

The audition actually made quite an impression on me. I don't know where this will take me, but I am ready for the journey if God has it on my "to do" list!

A Giant Victory in the Desert!

2008-02-03T22:59:00.001-05:00

We did it! The New York Giants shattered the New England Patriot's unbeaten season in the final minutes to win the Super Bowl! It is one of the biggest upsets in Super Bowl history!

I still cannot catch my breath. I think I actually stopped breathing at one point! OMG. I am certain I will not have a voice in the morning, with all the screaming I did all night long!

We were invited to our friends Kim and Kathy's house in Smithtown for the party, and we had a fantastic time! I baked a large chocolate sheet cake, and Sally decorated it for the occasion.

I also made chocolate football treats. They were a big hit!

With only 35 seconds to go, Manning tossed the winning touchdown to win Super Bowl XLII. And there were five, count them, five sacks on Tom Brady!

This is a night to remember forever! Go Giants! We are definitely numero uno!

This coming Tuesday is the victory parade in Battery Park for the champions. The same day as 'Super Tuesday' in New York.

It's time to celebrate, New York. This is going to be a wonderful year!

Positive Living

2008-01-29T12:04:00.000-05:00

As I stare out my office window watching a lone seagull soar aimlessly in the sky, I feel truly blessed. Despite all the negative things that have happened in the last few years, God has been truly good to me.

A person must put things into perspective. Don't dwell on the negative, but learn from all the wonderful things this world has to offer.

View life as if you were a visitor experiencing the wonders of life on this earth for the very first time.

Like a new mother holding her newborn baby in her arms right after the blessed event. Or watching a tiny puppy running through a fresh blanket of fallen snow in the park. Or that first kiss between lovers when they know they found "the one."

Wake up each day, ready to start anew! Don't keep dwelling on the negative, continually asking why me?

Instead, be thankful for what you have. A brand new day, good friends, a loving family. And most importantly, God's love.

You lose nothing by living this way. But the gains are immeasureable!

Sunshine Brings Smiles Today!

2008-01-23T16:07:00.000-05:00

What a beautiful day! It's 40 degrees outside, and the sun is shining bright. Despite the temperature, I took a drive out east to shop and walk around.

I had to buy a Giants sweatshirt to wear when I watch the Super Bowl on February 3rd. The one I own has their outdated logo, and I wanted a new one.

We (my NY Giants) have a good chance of winning it all this year, despite the odds. I think it is about time that New York whips New England once and for all, for the title!

On another topic, I am still utterly exhausted. No matter what I do, I can't seem to shake it. I have an appointment at the lab this Friday to check out my blood levels for the past month. I hope and pray they are still okay, and that this exhaustion is just part of the healing process.

Staying out until 4 in the morning this past weekend didn't help, I guess! Our gig at The Court House was fantastic, and I think my voice was better than it has been in a very long time.

We all went to a local diner after the show and I didn't get to sleep until 5! And then we went to a friend's house for an early dinner on Sunday...so it was a busy weekend.

Last night, Sally and I went to the catering hall to finalize the menu for our affair. We got the names of two bakeries so we can select our cake. I have to call them and meet with the bakers and decide on a design. We want to it match our cake topper that we had personally designed for the occasion.

The invitations were mailed out yesterday at the post office, so the clock is now officially ticking! Let's just hope our gowns come in on time, and that everything continues on this wonderful path forward.

I am so in love. I have never been as happy or as much at peace as I am at this moment in time. Despite the negative energy or sadness around, I remain positive and thankful for all that I have.

A much happier, spiritually healthier & content me!

Hang on tight world...full speed ahead!!!

The Days Are Flying By!

2008-01-16T15:03:00.000-05:00

Not feeling well the last two days. Kind of hard to describe. I have an ache in my neck and it radiates to my right ear.

I saw my primary doc today and he seemed puzzled. He said that my ears are pristine, but that my lymph nodes are swollen. Dr. Cipolla said it is viral and that I should give it a week. If I don't feel better, come on back to his office.

Now, what bothers me, is that is the side of my face where I had the new crown put in last week. But why would the pain come from my neck? It would seem that if it were coming from my mouth, that the pain would start up there and radiate down. I guess I will sit tight for a few days.

This past Sunday was very nice. Mom drove out earlier in the day, and then my brother Scott came out with his boys. We finally got to celebrate the holidays together. Better late than never!

While Mom visited for a few days, we went shopping for a "Mother of the Bride" gown. She insisted that she was only going to look, and then when she gets back to New Jersey, she'd go shopping with her friends and really look. Then once she found something, I'd drive out and see it before she made a final decision.

Well, guess what? The third dress she tried on was a keeper. She looked absolutely beautiful in a long, lacey black gown. One more thing accomplished.

We actually received a call from Chateau La Mer last night to schedule a meeting to finalize the menu. I cannot believe our "big day" is less than 3 months away! OMG!

Last week we had our pre-wedding photos taken, and they came out beautiful. It was hard to choose just one! We were really lucky to have such a mild day with temps in the 50s, to go out and have a photo shoot, in the middle of January!

The happy couple!

The days are flying by. Life really is too short! I must never put limitations on myself, and live each day to the fullest. Especially since I will be turning the big "50" very soon!

I no longer fear the future...despite having a chronic disease. God has blessed me with a loving family and wonderful friends. The love of my life and I will be making a lifetime commitment to each other in April, and the doctors are working with me to beat the odds.

"Nothing can stand before me when God stands with me."

A Good Day!

2008-01-09T18:41:00.000-05:00

Received wonderful news today. Dr. Rumore's nurse, Andrea, called me this afternoon to say my latest blood results looked great. Whew...that is a relief!

Been really, really tired lately. Actually...I am exhausted. But I keep on chugging along. We had a full weekend, including the premiere of the "L Word" at Cinema Arts Centre in Huntington. It has turned into an annual event nationwide, and approximately 500 gay women gathered to watch the first episode of the fifth season.

After the show, half of the women drove over to Baang in Woodbury for a party. It was a lot of fun, with all proceeds going to HRC, The Human Rights Campaign. (http://www.hrc.org/) Lots of dancing, drinking, and mingling. Good vibes all around!

Yesterday began with a very interesting phone message from "my" ING representative. Remember my blog from a few weeks ago when I got so upset by this woman's phone call? She had said that I needed to go back to work, despite my health and it was up to me, not my doctors to make that decision?

Well, she apologized! Yes...APOLOGIZED!! She said she didn't mean to upset me and that she shouldn't have said those things to me! She is closing her files on me for now because I do not qualify to work at any occupation at this time due to my health status. No shit, shirlock!

Since the weather was unseasonably mild, Goldie and I met my friend Julie (and her golden Taylor) at Gardiner Park. She encouraged me to let Goldie off her leash, and it was fantastic. Overall, Goldie did very well on our one hour walking adventure through the park. But those few times she lagged behind, Taylor went right over to her, gave a loud bark, and the two trotted happily together down the trail.

I fell asleep for two hours after that hike...whew, was I beat! Then last evening, Sally and I met some people for dinner at Honu's in Huntington for our friend Barbara's birthday. What an interesting dining experience.

The atmosphere was very chic and sophisticated. And the menu extremely different. There were no appetizers and entrees, per se. Everything was served on small plates, and everyone at our table shared a taste. I think we ordered each and every dish on the menu between the fifteen of us. We had a great time!

This morning I made a conscious decision to walk on the treadmill and try to lift some light weights on the machine. I have to work on gaining my strength, a little at a time. And since I received the great news that my bloodwork is status quo, I must continue to work at it.

Each day affords us the opportunity to start anew. Take a chance, and go for it with every part of your being. I am! And so should you.

No more excuses!

Think Positive!

2008-01-02T16:53:00.001-05:00

Happy New Year!

I want to thank you all so very much, from the bottom of my heart, for all of the wonderful personal emails and comments I received in the last few days about this blog. I always said...if I touch just one person with my words, it has been all worthwhile!

Through all of the difficult times I have experienced in the last few years, I now understand that these hard periods of my life were really the outer crusts of change that had to take place for the greater good in my life. In Metaphysical Science, I am learning to "handle" negativity and ultimately, it will produce positive results.

It is important to understand that we cannot eliminate negativity totally from our lives. However, we must learn how to handle it! If something negative happens, one must not allow oneself to continue the negativity. Take time to only think positively and find one's innermost spiritual nature.

To handle difficult situations or negativity in your life, you must follow these guidelines:

Don't call up your friends or family and tell them what a difficult time your are having. Otherwise negativity can and will reflect back on you. However, it is important to find one confidant in your life who has a positive outlook on life.
Don't blame yourself, someone else or God for your failure.
Be open and aware to new ideas that may enter your mind during this difficult time. If you open your mind, the answers will come to you.
Enjoy life each and every day, despite the difficult times you are experiencing. Life will love you back!

Through the practice of meditation, I hope to enter a wonderful new way of living...to become a better person spiritually, psychologically and physically.

And most importantly, improve my health status by connecting deeper with God's energy...which is the natural healing energy of the body!

Out With the Old, In With the New!

2007-12-31T12:55:00.001-05:00

Less than twelve hours and counting until 2008. I am scrambling to get things in order for the coming year, while in-between I am doing my chores. We are staying in this evening...no big plans. Just putting on our pajamas, lighting a fire, watching a movie and probably catching the ball drop at Times Square on TV.

The air has a chill in it today, but we didn't get the snow they mentioned in the forecast. It may still happen tonight, but that is okay!

So much has happened in 2007...good and bad. But the good definitely overrides the bad a million times over. I legally adopted my son, Sally and I set our wedding date, we bought rings, Sally changed her last name to mine, we went on a mini vacation, and most importantly...I am in remission!

A person looks at life and the world differently when faced with a life threatening illness. A year ago the docs thought they could no longer help me, which meant life could be over sooner than later. But I am thankful and am blessed for so many things, including:

1. My loving partner, the love of my life...who without her, my world would be empty. She has given me more than I can ever say. The deep connection we have is stronger than life itself. Thank you for giving me the greatest gift of all, our son.

2. My son, my 14 year old bundle of energy. He makes me smile each and every day. I never thought I would be a parent at this phase of my life...but miracles do happen. Thank you for taking Grandpa's name...you make us all very proud!

Jarrett William Boyarsky

3. My mom. What can I say? She has been there for me and with me through every joyous and sad day in my life. Not only is she my mom, she is a true friend. God truly blessed me with a "One in million" mom. I love you, Mom, with all my heart and soul.

4. My family. Past, present and future. I especially am thankful for my loving brother and godson/nephew. And to those who have passed including Dad, Grandma Jean, Grandpa Sam, and all the rest...I miss you with all my heart and soul.

5. My friends, from childhood through today. Dawn, Pat, Joan, Monique, Barbara, Karen, Kat, Joanne, Kristen, Drea, Tracey, Nancy, John, Sharon, Mary, Sima, Marc, Rich, Brian, my band members...just to name a few. I am blessed to have you all in my life. And those who have passed as well including Lorna and Ron, you are always in my memory.

6. My new family. Monique, Suzanne, Virginia, Patricia, Pat, Marie, Julie, Alfred, Janine, Jack, Jessie...and all of Sally's clan. Thank you for welcoming me into your family.

7. My four-legged family, past and present. Prince, Casey, Kandie, Dylan, Gizmo, Gabby and Goldie. They were and still are the best friends any human can have. No judgements, just unconditional love.

8. My doctors. What can I say? Dr. Rumore...you saved my life. Thank you also to Dr. Spiera, Dr. Cippola, Dr. Gudesblatt, Dr. Maurio, and Dr. Ruisi. God has blessed me with the most brilliant physicians on earth.

9. Genetech USA, the makers of Rituxan. For providing me with the medication, free of charge, that saved my life.

10. Donna Rosen, Judge Freundlich and the entire Suffolk County court system. You have given me the greatest gift of all...my new family for life.

11. The United States Army, Navy, Marines and Air Force, past and present, for defending our freedom all over the world.

12. Last, but definitely not least, almighty God. The higher power within the universe. You have allowed me to wake up each morning, and gave me a second chance at life. I can play with my dogs, walk along the ocean, and most importantly...study to better serve you. You have guided me in a positive direction and have given me strength and courage to move forward. Studying to become an ordained minister and receive my doctoral degree in Metaphysics within the next year will be the way I give thanks for all you have done for me.

My wish for everyone is a happy, healthy and safe New Year. I look forward to writing much more in the years to come, and enjoy reading all of your comments. Please keep them coming.

Let me close my 2007 blog with a quote from Rabbi Harold Kushner:

"If you concentrate on finding whatever is good in every situation,

you will discover that your life will suddenly be filled with gratitude,

a feeling that nutures the soul."

Excited & Tired, All At The Same Time!

2007-12-29T22:26:00.000-05:00

I am completely and utterly exhausted. I don't think I can type too much either. Let me explain!

Today we spent the ENTIRE DAY shopping for wedding dresses. Yes, ALL DAY! Mom, Dawn and Pat accompanied us and, whew, was that an experience. I cannot begin to tell you how many outfits I tried on.

Originally I only wanted to get a wedding suit. Then I decided to get a dress. But after today, I am actually going to wear a wedding gown.

Yes, you read that right. Now, for those of you who have known me for a long time, you must be re-reading that over again while your mouths drop. But for those of you who don't know me...I haven't worn a dress since 1998. You see, I wore suits with skirts every day to work until then...but when I turned 40 I decided I would never wear a dress or skirt again. Guess I was wrong!

At one shop, Sally walked out in this stunning gown and I started to cry. Everyone within shouting distance stopped and just stood there with their mouths to the floor. All Dawn and I could say was "wow!" She will be absolutely gorgeous on our big day...I can't wait!

Looks like I also had the "wow" factor with one gown. But the decision was sealed when Mom started to cry. I knew I had found "the" gown!

This is really the last thing we have to do, formally, besides mail out the invites next month. I cannot believe our big day is just a few months away. We have been talking about it for so long...and it is getting closer and closer.

Me and my honey!

Sally and I actually celebrated our eighth anniversary this past Thursday night at Cafe Testarosa in Syosset. It was fantastic...superb! We were laughing because we realized that we have to start counting our anniversary from the beginning again after the commitment ceremony. That is weird, right?

Let me just continue on the path to good health from this day forward. I haven't been feeling well lately, but I am trying to fight it. I can't really say what is wrong, except that I am dizzy very often. I have been off the Imuran for three weeks due to continuous dental work. Perhaps my body is weakening.

I had blood work last week, so I should know something right after the new year.

Here's to a happy, healthy and joyous 2008. May God bless each and every one!

Silver Bells...It's Christmas Time on Long Island!

2007-12-25T23:49:00.000-05:00

Christmas 2007 is winding down. It has been a hectic few days, but overall I have been feeling okay.

Dylan woke me up this morning with his famous bark, informing me that he wanted to open his presents! Whoever coined the phrase "dumb animals" never met our nine year-old golden! He had been eyeing the gifts since we put them under the tree last night, and as soon as I opened my eyes this morning, he wanted his!!!

Goldie and Dylan waiting to open their gifts!

This was Goldie's first Christmas, so we didn't know what to expect. But she was quite calm and enjoyed experiencing all the excitement. And of course, she loved her new baby!

We all exchanged gifts while holiday music played in the background. Sally even videotaped some key moments, especially when Jarrett and I danced around in our Santa hats. What a sight!

Matching shirts that say "Buy Me a Shot, I'm Tying the Knot!"

I personally delivered holiday cheer to our neighbors, and told them I have a lot to be thankful for this year. They were all very appreciative.

Pat and Dawn invited us to share Christmas dinner with them and their family, and of course, we had a wonderful time. I love the two of them so much! They are more than just friends...they are the sisters I never had.

Last night we spent Christmas eve at friends' of ours in Babylon. They have an annual holiday cocktail party/dinner, and we were so thrilled to be counted in this year. Especially since I hadn't seen them in almost 15 years! We reconnected this past fall, and I am certain we will never lose touch again.

The only thing I missed this holiday was having my family, especially my brother and my nephews, here for our annual holiday dinner. Due to circumstances beyond MY control, the family hasn't gotten together to exchange gifts. But perhaps it can still happen in the next week or so.

I did experience a very special moment today. Sally's Aunt Patricia called to wish us a good holiday, and she asked to speak to me. I have never met her since she and Uncle Pat live in Florida, and have not been able to travel. But she promised that they'd try to make our ceremony this April.

We spoke for just a few moments, but her words meant more to me than I can ever say. She said that even though we have never met, she loves me and considers me to be like a daughter. I could not hold back the tears!

I have so much to be thankful for this holiday season, and so much to look forward to in 2008. Better health and love of family and friends!

God is truly good!

Oh No, Not Again!

2007-12-22T20:18:00.000-05:00

Here we go again. I received a call from IMG, my long term disability carrier. We had been playing phone tag for several weeks, but I wasn't in a hurry to speak to them. It can never be good if they call.

Well, to make a very long story short..."my" representative feels that I should be ready to go back to work because I am responding to the rituxan.

Considering that I told her that I just had my last treatment in July, and am only now doing better is no indication of things to come. Yes, my docs are pleased, but we should not jump the gun. I said I would speak to my docs about it and get their feelings about it. And guess what she said?

To quote her exactly, "YOU know what is best for you, not your doctors."

You've got to be friggin' kidding me! I guess the fact that I am immunosuppresed has no bearing on sitting in an office filled with people that could be ill. Or, that I am taking it one day at a time right now.

According to the employee benefits representative, I had a change of definition for my disability. Even though I can not perform at my own occupation, I should be able to do any occupation. According to their labor market survey, I can do a sedentary job with no restrictions. Possibly even rehab employment. OY VEY!

I am the first one who wants to work and make money. Believe me. But not until I am given the green light from my doctors. They are the specialists that have saved my life and I will NOT risk listening to someone who is being paid to get me off of LTD.

I am still collecting from social security disability. They agree that I am totally disabled and there are no problems. Who needs this aggravation?

On another note, we lost a friend this past week. A friend of our son's mom. We met Michele over four years ago when Jarrett played little league with her son. It was a freak accident that took her young life, and the display of love and support from our community was overwhelming. I am honored to live in North Babylon.

May God rest her soul and bring comfort and direction to her grieving husband and two young sons.

Mom took me shopping for a wedding dress this week as well. Believe it or not, I am going to get a bridal gown afterall. As soon as I put it on, I felt special...beautiful...everything a bride-to-be should feel. Sally and I are going to look at a few more shops before I make a definitive decision, but I am almost certain I found "the one!"

Only a few more days until Christmas, and in just a little more than a week, it will be 2008. Bring it on!

The First Snowfall--One To Remember

2007-12-02T23:30:00.000-05:00

It's December 2nd, and the NY-metropolitan area experienced the first snowfall of the season. It wasn't really a big deal for most, since it only left about an inch or so on the ground. But for us, it was a special time.

You see, this morning was the first time our little golden puppy touched and played in the icy cold substance. What a joyful and heartwarming scene.

Can you imagine what she must have been thinking? To be inside her head during that first step onto the cold ground would have been unbelieveable! The curiosity, the innocence...it was pure happiness.

Of course Goldie loved the snow. She must have gone to the sliding door about a dozen times during the day to let us know she wanted to go out and play. Once she realized she could "eat" the snow, she got even more excited!

To experience today's "first" with our puppy is a memory I will always cherish.

Each and every person needs to learn to slow down and relish the little things in life that bring us joy.

Isn't life wonderful?!

Another Day...Yet Another Test

2007-11-30T00:31:00.000-05:00

"Pant...in, out, in, out, in out."

"Take a deep breath. Hold it, hold it. Blow hard."

Sounds like a script from a porno flick, eh? Ha, ha! Nope, it was just some of the instructions I was given during my pulmonary function test.

Earlier in the week I had an appointment with a specialist at The Center for Pulmonary Care in New Hyde Park. Since no one ever came up with a solution to my chest pain, shortness of breath, wheezing and cough, it was suggested that I see another lung specialist. It seems that my latest CT scan showed more nodes on my lungs, so we need to find out what exactly is going on.

Interstitial lung disease is a scarey possibility, but Dr. Karpel is pretty optimistic that it can be ruled out. You see, a lot of patients with polymyositis have lung involvement which can cause difficulty with breathing.

Pulmonary fibrosis--more specifically--is another possibility, as it causes scarring of the lung. It appears to be an autoimmune disorder, or the after effects of a viral infection. Possibly a genetic predisposition. In this case, there is no known cure.

Dr. Karpel is reviewing all of my recent tests (endoscopy, CT scans, stress test, echo, etc.) and then will review today's PFT.

My technician in the pulmonary function lab was a sweetheart. She explained every single test and why it was being performed. I laughed to myself many times, in between each test, because of her instructions. She was literally screaming so that I could hear her over the breathing exercises. At one point I was fully enveloped in a plastic booth while taking one of the breathing tests. I felt extremely claustrophobic.

Pulmonary Function Testing/Lung Function Tests, in essence, evaluate how well your lungs work. The tests determine how much air your lungs can hold, how quickly you can move air in and out of your lungs, and how well your lungs put oxygen into and remove carbon dioxide from your blood. The tests can diagnose lung diseases, measure the severity of lung problems, and check to see how well treatment for a lung disease is working.

The most uncomfortable part of the test, besides the claustrophobia, was the side-effects of the albuterol inhaler. I had the shakes for over an hour.

The tech felt that my tests, before and after albuterol, truly didn't show anything specific, so she is recommending another PFT called the Methacholine Challenge Test. It is all up to Dr. Karpel if I have to go back for the test to see how sensitive airways in the lungs are to materials that may cause narrowing or contriction.

The purpose of the inhaled bronchial challenge test using methacholine is to determine how responsive (or irritable) your airways are and to determine the severity of any asthma. The test, according to some of the literature, is considered safe with a low complication rate. Hmmm.

Let's wait and see how the doc wants to proceed. A step at a time!

A Home Run!

2007-11-20T17:19:00.000-05:00

I received more great news today! My best friend, Dawn, is cancer free! She had another colon cancer scare recently, but her doc assured her that she is fine. She is home recuperating from her surgery, but she will be dancing at our wedding in April!

And a longtime friend, Linda, called me to say her Mom's lung surgery at Memorial Sloan-Kettering also showed no signs of cancer.

Whatever a person must go through...whether it be an illness, a loss or a traumatic event...one must maintain a positive attitude.

The power of God within each person is greater than any outside force...in my case...pain and weakness of the illness within me. Or with my friends, the fear of cancer.

Each day you must yield your mind and body to the God-power within. This power can bring peace, power and healing to one's body and mind.

Always give thanks to the God-power of one's mind for giving yourself self-mastery.

For God is truly good!

Amazing News!

2007-11-19T21:13:00.000-05:00

"You are in remission!"

Those four words came straight out of Dr. Harry Spiera's mouth on Thursday at my check-up in New York City. Mom and I looked at each other in disbelief. Was he talking about ME??? Yep, he was!

As soon as we got into the waiting room, we exchanged the biggest hug and I proceeded to send a text message to everyone I could think of!

Since my bloodwork has been consistently good for the last few months, there is no need to think about another Rituxan treatment at this time. If all goes according to plan, I won't need one for at least a year or more. Hallelujah! However, if I start to flair, I need to take care of it as soon as possible.

Some other wonderful news is that the love of my life LEGALLY changed her last name to Boyarsky. So we are officially a family, even though we have been like this for eight years! How lucky can I get?!

On another note, one of my best friends in the world lost her Dad to ALS. What a horrific disease. Joan's dad, Fred Ruprecht, put up such a strong fight until the end. I will always remember how his laughter and smile could light up a room. And if there was music anywhere around him, he'd be the first one on the dance floor.

We saw Mr. Ruprecht this summer at one of Joan's gigs. He was so frail, but as soon as the gig started, he was up on his feet and asking all the ladies in the audience to dance.

Life is so fragile. So many people take it for granted. But I have learned through this terrible illness, and now...most recently through my studies...that we must be thankful for each and every day.

Mr. Ruprecht truly lived life. Each and every day, despite his weak body and obvious pain, he visited the love of his life in the nursing home twice a day. He sang and danced for the other patients, bringing joy to those whose lives were empty of joy.

Through my studies and eventual ordination, I strive to overcome whatever obstacles are in my way...just as I am doing with my disease...and bring joy to others.

I have learned that in order to be successful in life, we must confront the weakness in our lives. We must want to change; want to succeed and be happy. If you truly believe...it will be.

If It's Not One Thing...It's Another!

2007-10-20T23:55:00.000-04:00

Just when you think you are taking a giant step forward, you have to turn around and take two steps back.

I am sorry that I have been out of touch for a few weeks. On October 1st, I woke up not feeling "right." I didn't want to alarm my family, so I got out of bed and walked around the house. Unfortunately, I felt much worse and asked Sally to call 9-1-1.

Within minutes, a Suffolk County Police officer was administering oxygen to me and taking my blood pressure. Then all at once, my livingroom was filled with EMTs of all shapes, sizes and genders.

According to the EMT taking my vitals, it appeared that I was in the midst of having a heart attack. Yep, a freakin' heart attack. I was wheeled outside and lifted into the ambulance. They waited for quite a few minutes until I was stable, after taking the nitro under my tongue, to jet me off to the local hospital.

Once I arrived in the ER at Good Samaritan Hospital in West Islip, everyone was so attentive. But that stopped rather quickly. Over the next six to eight hours, no one...not a nurse, aide or physician came over to check on me. If I had been alone, I would have pee'd on myself and I was never even offered a glass of water. Thank goodness Sally stayed at my side all day.

I kept telling the staff that I am immunosuppresseed, but they didn't seem to give a shit about that. They decided to keep me in the ER overnight since there were no beds upstairs. However, I said NO WAY! So they finally wheeled me to the cardiac floor later that evening.

Once I got into my bed, the nurse came over and said my chart was empty. No one in the ER took any notes. Interesting, huh? I was just glad to get into a room with my own bed. It was next to the window and a crucifix with Jesus watched over me all day and night. Hey, it can't hurt, right?

After several days of tests, nothing was conclusive...so they released me. I made an appointment to see my internist and my cardiologist for further testing. My rheumy is a bit confused over this entire episode, as am I. He felt it may have been a spasm.

This week Dr. Ruisi, the cardiologist gave me the all clear. He wants me to start a serious exercise routine. On the other hand, he told me to speak to my internist, Dr. Cipolla, about what the next step should be.

Dr. Cipolla sent me for a CT scan with contrast of the stomach and pelvis. That chalky liquid is nasty, but I drank it down! They also put in a needle with dye through my arm for contrast. It wasn't all that bad afterall!

On Monday I have an appointment at Dr. Kongara's office (my gastro) to see if it is my gallbladder or spleen. I have been doubled over with pain for several days, so I pray we now will have the answers.

A friend of mine is driving me to Mineola for the appointment. Whatever it ends up being, let's take care of it right now.

I cannot deal with this pain any longer, and I want to move on with my life.

On a positive note, I brought my camera out to Jarrett's cross country meet last week. Lots of fantastically talented athletes out here in Suffolk...and the landscape at Sunken Meadow State Park was truly nature at its best. Well, I will catch up after Monday's gastro appointment. I just hope they find "something" after all of this pain and discomfort. I have a commitment ceremony to plan!

New Glasses & Great News!

2007-09-28T00:34:00.000-04:00

No wonder I am having trouble reading! The eye doctor said I needed a totally new prescription, even though I have had them for less than a year! In addition to getting the progressives again, I ordered darkening lenses and a coated material for the lens to help with the glare.

Sally and I had a nice day last Friday. Jarrett had school, so just she and I started the day at IHOP after meeting with his guidance counselor, and then went on different errands. We giggled a lot, and Sally mentioned how nice it will be for the two of us to be alone in a few years. (once Jarrett becomes more independent!)

Did I mention that Jarrett made the VARSITY Cross Country team as a freshman? Only one of two in the entire school. He is a born runner! Yep, that's my boy!

Sally spent the entire day on Saturday building shelves in our office closet. I was quite impressed with her design concept and final product. Way to go, Sally!

Then on Sunday, Sal and I got out of the house early to attend the West Islip County Fair. I specifically went to find a handmade, heart-shaped wreathe. However, my day was made with just a single handshake.

One of my favorite painters has a booth each year at the fair selling her artwork. Have you heard of Diane Romanello? We have several of her prints throughout the house. She is known for her beach and outdoor paintings. They are all drawn by memory since she now lives in Florida.

We casually strolled over towards the booth and much to my surprise...there she was! Not only was she there in person, but she had one of her lastest paintings out on display...The Fire Island Lighthouse. I had to have it. And of course, I now own it! It was a pleasure to finally meet her.
On Monday evening I took the train from Babylon to Penn Station to take the trek out to New Jersey for my friends funeral/memorial. It was rather a long ride, but I was able to figure out where to change trains in Penn vs. NJ Transit.

The Memorial Service for Patti Jacobson was short, but those all in attendance left with heavy hearts. It was so difficult and wrong to see a Mom mourn for her young daughter. It isn't supposed to happen that way.

Mom drove me back to Long Island because we had our "tasting" already scheduled for Wednesday evening at Chateau La Mer. We spent the day in Riverhead at the Tanger Outlets. Mom did okay...buying a beautiful suit, a pair of shoes, and other miscellaneous things. I really enjoyed spending the time with her. I miss her so much and wish we lived closer.

That evening when Sally got home, the three of us drove to the tasting. We were greated by Lou, our catering manager and were escorted to a table for three. We were treated to a wonderful evening overall.

We walked around this elegant catering hall and showed Mom all three rooms...where the ceremony will be held, the cocktail hour and of course, the reception. Needless to say, she LOVED it!

The views of this magnificent waterfront facility took my breath away once again. Mom said it reminded her of being on a boat...watching the waves on the Great South Bay. The full moon was in the distance and the panoramic waterview from the main room sent chills through my body once again!

Our samplings were exceptionally good and we made the decision right there to have our once in a lifetime ceremony this coming April.

Now the fun begins. I ordered "Save the Date" magnets and we have to start to scramble to get things done. April isn't that far away.

But having the day with Sally, my family and close friends, will be the perfect dream come true.

I deserve it, right? Of course right!!!

Another Life Ends

2007-09-23T01:18:00.000-04:00

Blah. An interesting word, right? It describes exactly how I have been feeling the last few days.

Not sure if its the change of weather, the end of summer or the solemn holidays...but I have been "off." Every muscle is aching, especially my hips and shoulders. It actually feels like my hip joints are rubbing together. And my head feels like it is about to explode.

Yesterday was Yom Kippur, and I actually went to Yizkor Services at Congregation Beth Sholom in Babylon. I arrived during the Torah portion and stayed until the memorial service was over. It is a conservative congregation, so the services were entirely in hebrew. I actually was able to follow along, much to my amazement!

I have been rather reflective the last few days. Perhaps its just how I am feeling since beginning my ministry studies. I find myself closing my eyes often and praying and/or meditating.

My mom received horrific news...Patti, a 48 year old friend of the family, from my elementary school days, had a massive brain aneurism on Thursday, and they took her off life support Saturday afternoon. She had complained about back pain, and the day before thought she was getting a cold. She went to work and collapsed. She was brain dead.

Her family has had a hard life, and this is just another blow. Patti's mom had a brain tumor when she was in elementary school, and has health problems all these years. Then her dad passed away at a young age.

How difficult it must be for a mom to bury a child. It isn't supposed to happen that way. My wonderful mom has offered assistance to Patti's mom and brother, and we are awaiting a date for the funeral. I was told she will be cremated, but that the service will be at my mom's temple in New Jersey.

Mom was supposed to come out to Long Island this Monday and spend a few days with us. We are scheduled to go to Chateau La Mer for a food tasting to decide if we are definitely having our commitment ceremony there in April. We signed the contract, pending the food tasting!

Each day, life throws us another curveball. We never know, from one day to the next, what is in store for us.

God wants us to live each day to the fullest, and to love and fully appreciate the people in our lives. We must practice this each and every day. Be the best person you can be all the time.

Smile. Laugh. Enjoy!

A New Beginning

2007-09-18T23:37:00.000-04:00

L' shanah tovah. Happy New Year!

Last week we began the new year 5767. Jarrett and I drove to New Jersey on Thursday to have dinner with the family. It is the first time, since Dad passed away, that Mom invited everyone over for a holiday feast.

It was wonderful to sit at the dining room table with my loved ones and enjoy her matzoh ball soup, pot roast and potato kugal. The atmosphere was definitely different without Dad at the head of the table. But I know he was there in spirit.

My wish to see my nephew/godson play baseball on Long Island finally came true this past weekend. I spent Saturday and Sunday driving back and forth to Baseball Heaven in Yaphank watching him play. He is so grown up...and has the poise of a professional athlete. I am so proud of him.

On Sunday he had a lot of time between games, so I took he and his mom, Julie, out to breakfast and back to our home. He did his homework, played with the puppy and just talked. I miss spending time with him. It has been over 15 years since I moved out of New Jersey...and the little time I spend with him is so precious.

The good news is that I kept my promise to start studying right after Rosh Hashanah. I opened my introductory book yesterday and completed the first two sections. The readings were fascinating and the questions quite challenging. But it truly opened my mind.

You see, the first part of my doctoral degree is to study to become an ordained minister. The chapters will challenge my skepticism and help me embrace the power of God.

Last night, before I went to sleep, I meditated a different way. My first chapter instructed me to light a single white candle and stare at it for ten minutes. At that point, I closed my eyes and concentrated on the flickering of the candle and find my "third eye." What an amazing experience.

Over the last few years, I have seen various "visions" while my eyes have been closed. In fact, I thought that I saw a small hole where distorted shapes and colored lights seeped through. I now realize it is my second sight/third eye--the eye of the soul.

I have to pace myself through the chapters...all 48 of them...so that I can absorb the information, repeat it and then practice the teachings. I cannot pressure myself to any specific number of chapters per week, but the school suggests only two. Yesterday's lessons took about four hours from start to finish...quite a major accomplishment for me after three years of being ill.

Unfortunately my eyesight has diminished, even with my progressive glasses on. I made an eye appointment for Friday to get them checked.

It is time for bed. I have to get up early and drive out to Smithtown for my monthly bloodwork.

A happy and healthy New Year to all.

May you be inscribed and sealed for a good year!

A FLY IN THE OINTMENT!

2007-09-10T12:06:00.000-04:00

Wow!

Let me write that again...wow! You cannot believe what I heard on Channel 7 news the other night.

It will be six years tomorrow that we mark the dreadful anniversary date of September 11th. And a "9/11 Health and Compensation Act" is being introduced to Congress. This new federal legislation will push for better healthcare for those still suffering from the aftermath of the terrorist attacks, the first responders.

Advocates are calling for reopening the September 11th victim compensation fund so more workers who are sick can be monitored and treated.

Now...are you ready for the shocker??? Are you sitting down?

Guess what "disease" several people who worked at ground zero the months following 9/11 are suffering from? (Don't think too hard!)

You got it...POLYMYOSITIS!!!

According to Channel 7, "normally one in every 100,000 people get this, but four out of 8,000 got the disease so they determined it's from Ground Zero."

Hmmm...Ground Zero. So, now I am thinking. Perhaps my disease is NOT genetic. Perhaps it is environmental.

Now, the second kicker. A former colleague of mine from Underwriters Laboratories--where I worked from 1995-2001--died last week from a form of mixed connective tissue disease. She never smoked and was on oxygen 24/7. This 55-year old woman was in desperate need of a lung transplant, and was on the waiting list. Unfortunately, she passed away before she had a second chance.

This has me seriously baffled. What am I to think now??? Was I exposed to something during some of the tests at UL? Is everyone else there at risk?

Guess it is time to do more research online, follow the 9/11 responders and ask many more questions when I see Dr. Spiera.

Wow!