Verfasst von: melscholz | 27. Dezember 2012

Year’s end update – 8 months post HSCT

Of all the things that need to get done this morning while I have a little peace and quiet, finally writing a blog entry is close to the top of my list.

First of all: Merry Christmas! Happy (belated) Chanukah! Happy Holidays in general- Hopefully you all had enjoyable days with your family and friends in whatever combination made sense this year and are looking forward to the start of a new year.

baum richtig

Back to my stem cell transplant for MS – It’s been 8 months since Day 0 now and I really truly have been busy in the last months and have not taken time to write an update. It is also hard to find the words to describe my doubts and frustrations. Recovery is a long, slow (sometimes tedious and trying) process.

 

It was a wonderful experience, with wonderful people in Tel Aviv but it is also nice to have the focus of my life on things that are not always about me for a change. It’s nice (I guess) to be the center of attention for a while but always talking about myself gets boring after a while – there is so much else to do and talk and think about!

So: No medications since last November, a savings of over 50,000 $ so far (and growing by approximately 4000 $/month) for the health insurance company. I just sent them a 4 page letter with 40 pages of attachments documenting the medical and cost effectiveness of HSCT for autoimmune disease. I request the state health insurance to consider paying for part of my HSCT procedure and to review and approve in general for people with MS. Because there are no pharmaceutical companies that will profit from HSCT, it will be a uphill battle.

Physically all clinical progression has stopped, as verified by 2 neurologists and my recent MRI. My balance and strength have not improved but have not gotten worse. My body tires quickly. It seems that the chemo side effects are still slowing me down. The neurologists did notice some improvements in some areas. (Vision, swallowing, voice, finger/hand tremble) I feel that my thinking is better/quicker, my fine motor skills and tactile sensitivity have improved. Sometimes my bladder control is better, sometimes it ain’t.

And yet I am disappointed and frustrated at times. There are two or three factors here that come into play:

Recovery from chemo and repair of the myelin sheath will take TIME – 2 to 3 years. Since I had slow progressing MS for so long, a fair amount of the nerve damage is permanent. If the progression has truly been stopped, that will be a major accomplishment. If there are improvements, that will be icing on the cake. (The fact that I can use the past tense now when writing about my MS is amazing enough!)

That said, I know that I am a person who still expects a lot of myself and pushes and wishes that all the MS symptoms would just be blown away by the wind. (I admit I had secretly hoped that I might be able to go skiing this winter – just a little baby hill …utopic, I know deep down) Some people have to work hard to motivate themselves to get off the couch and do things, I have to work hard to slow down and enjoy all the little good things in my life.

The third thing I’ve noticed is probably dictated by human nature. When there is something that I can’t do, it drives me crazy and frustrates me -like trying 7 times to get a button buttoned. When it gets better and I only need three tries, I quickly take it for granted and move on to the next thing, like typing on the computer and am frustrated that my fingers are tired and uncoordinated after half an hour. It is so easy to always want more and to overlook what you have.

And you know what? After fighting MS for years, doing physical therapy 3 times a week, always saying and convincing myself that „I can still do everything, it just takes longer“, I’m tired of it!  It feels good to slow down a bit, even though that mans that I have to do battle with the „I’m not doing as much as I could“ demon at times.

The HSCT group on Facebook that started in February with 12 members has now grown to almost 450 members. We are a forum for people with autoimmune disease or their doctors or caregivers seeking to learn more about HSCT. We are a strong, caring, smart, helpful, active, closed (in order to keep out advertising) group and I strongly recommend it to anyone who has questions or wants to learn about HSCT. Here’s the link:

http://www.facebook.com/groups/149103351840242/?ref=ts&fref=ts

My guess is that I am spending a couple hours a day helping people who have contacted me through my blog and staying in touch with others who are now having or have recently had HSCT. It feels good to be able to pay it forward. My specialty seems to have become telling people what to expect when they go for treatment at CTCI in Tel Aviv. There are many other options available. Just check other parts of my blog or send me an e mail (melscholz@t-online.de) if you are interested. I’ll get back to you as soon as possible.

All in all, things are good, life is good, I’m happy and so grateful for all the support that was given to me in so many ways during this incredible year. Thanks a million!!!

mel flour

Curls on my head and flour on my chin from baking Christmas bread!

 

 

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