Thursday, March 08, 2012

It's Time to Say Good-Bye

After writing this blog for six years...it is time to say good-bye.

So much time has passed since my last entry, and I realized that it is time to move forward and just LIVE!

Despite the long time lapse, I still receive inspirational emails from so many people who find me on the internet.  Unfortunately, there is still little or no information available to those of us who have been diagnosed with Mixed Connective Tissue Disease.

Please, please remember:

It is important to ask lots of questions, and never only take one answer from your physician.

If you do not like what your doctor has told you, go to a different one!

Many people were wondering what happened to me.  In a nutshell, life.  I continue to have my ups and downs, but I realized that we must grab hold of life and enjoy the ride...despite what hand we are dealt.

Know that I will continue to fight for a cure...and to educate people about this disease.  I will no longer write in this blog, but I have started a new one specifically to share my daily thoughts and spiritual inspirations.

Feel free to keep in touch, and please visit often:
http://drbevisms.blogspot.com/

From the bottom of my heart, thank you for accompanying me on this journey.  I appreciate all of your prayers, encouragement and kind words.

Namaste.

Monday, August 23, 2010

The Long and Winding Road















"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.






Friday, June 04, 2010

With a Positive Mindset--Anything is Possible!

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

Thursday, December 31, 2009

My Bucket List: One More Has Been Checked!

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

Monday, November 09, 2009

A True Test of One's Spirit


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 answ
ers.

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 o
f 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 a
ny 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 i
mmune 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.

Monday, September 21, 2009

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

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.

Monday, August 24, 2009

Not The News That Was Expected: What Now?

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.