Reality

Wednesday March 21, 2012

Hi all!
Just felt it was time for an update. Just been so out of touch with everyone. I am so totally aware that life goes on around me. Everyone is busy. Everyone has their own cross to bear. So this is in no way intended to trivialize anything you are dealing with. Whatever it is in anyone's life, it  matters.

So NASCAR is finally back. Chris and I watched as much of the Daytona events as were aired on TV. We had enjoyed it there so much when we went in 2009 and again in 2010. So glad we got to do it. The nationwide race on Saturday was very exciting this year. I love surprise endings. Of course I try to find some sort of message in everything, and the event did not disappoint. Denny Hamlin is a fantastic driver with a great car and a great team. In spite of all the preparations, skill, and equipment, he unfortunately got caught up in the big one. In his interview he says "you can't control your own fate."  Every NASCAR fan knows that's what it's all about in Daytona. That first race of the season is so unpredictable.
Sort of like MS, ya know?

So the prompt for today's exercise in the catharsis of writing is a visit to the neurologist. My wonderful neurologist here in Manchester, NH will always be my #1. Dr Segarceanu  is the one who 1st uttered the possibility of MS and performed the spinal tap. She is the one who sent us to the MS Clinic in Lebanon, NH where Dr Lallana had the dubious distinction of declaring Chris and I have progressive Relapsing MS. I remember my immediate reaction was ok, now what do we do with this information? Chris's reaction was more realistic as he heard the words 5 years until totally in a wheelchair.
So here we are, just past the 2 year mark and both of us realizing just exactly what Progessive MS means. The attempts with Rebif, Betaseron, and Copaxin have  done nothing to delay the progression. So on our last visit to my Manchester neuro, she said there was nothing else she could do at her office, and she sent us to see Dr Katz at the MS Clinic in Brighton, MA. So on this unusual summer like day in the middle of March, Chris took me to tell our story yet again. St Elizabeth is a big place! But my wonderful Chris got us to where we were supposed to be without any trouble. Dr Katz is extremely caring. He listened to us, looked at all the MRIs and other test results and reiterated the diagnosis of Progressive MS, but he did make one edit. He said I had Primary Progressive MS.
The important reality here is there is no cure. 
We discussed the few treatments that are mostly experimental at this point. 
-A form of Chemotherapy is available. Chris and I are discussing this option weighing the pros and cons. The pros are merely possibilities. The cons are side affects similar to MS.
-Stem cell research is still only in trials. 

As a Dr, Dr Katz said his hope is to slow the progression and treat symptoms. It becomes a quality of life situation. The goal is to be comfortable and happy! I will never walk again, and I will get progressively worse, but life can still be lived!

That is all that really can be done. No matter what you've read on the Internet or seen on TV or read in a magazines , there is no cure for MS. There are some treatments for the relapsing-remitting forms that help control exacerbations. There are some drugs to help control symptoms.
 Progessive MS remains untreatable.
However, we will try another treatment. Tysabri  is a once-a-month IV infusion that has been shown to reduce the rate of relapses  and may possibly slow the rate of progression. It has a serious possible side affect called PML which is a brain infection. There is a blood test that I did today which  can determine the possibility of  PML occurring or not. So Dr  Katz will present my case to his colleagues and they will make recommendations. Sounds proactive, don't you think?
You must know that I am not one to travel the world in hopes of finding a cure. I am a simple gal with simple dreams. More than anything, I am so very tired and all I really want to do is make it to the bathroom in time.
I have not become one of those enlightened souls who basks in the beauty of life and G-d. I am not angry. I do not shout "WHY ME?" at the sky above. I am, however, extremely frustrated. I am trapped in a body that does not respond. I do live in fear. Fear of falling, fear of being alone and stuck. There's the money fears, the future fears, the what will happen to my husband and children fears. There is Fear of not getting my coffee and getting a caffeine withdrawal headache and now my newest fear has happened: fear of fainting in the shower with soap in my hair...FYI, not so bad! I do not mourn the losses of my former life as much as I assess each obstacle and decide whether or not it's worth tackling. 

So here we are. Not dying. Just sort of drifting through life right now. No hurries. Lots of what-ifs. No plans right now. Just keepin' it simple. Selfishly focusing what little energy I have on my husband and children.
Sitting here as the evening sun shines on me in my comfy chair in my Shalom Babayit.