Monday, April 28, 2008

Six Days Until the Half Marathon

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.

Tuesday, April 22, 2008

Little Goldie Returns Home, For Now!

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

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!

Wednesday, April 16, 2008

Ahh..A Good Night's Sleep

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!

Wednesday, April 09, 2008

Always and Forever

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!

Friday, April 04, 2008

Two Days and Counting...

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!