Time passes

Well once again I skimmed over my last blog posts and realized I haven't written here for a while. I didn't even do the year end assessment. Seems kind of fruitless as the MS is mixed in with the shoulder surgery recovery . The two have just blended together this past year. I haven't really been able to separate the two. Is it due to the surgery that I've spent more time in bed, or is it the MS progressing that has forced me to be more bedridden? It's just been really difficult to separate the two.
Well after a year and a half, I think I have recovered from the surgery. If I was a well person, I'd be back in the game. Even with the ostomy and bag I think I could be back to a new normal. But where has the MS left me? I stay in bed because it's easier for everyone. I'm comfortable and I'm safe, and I can entertain myself with the way I have my iPad set up and my little table next to me. But I never thought this room would get as much traffic as it does. I always dreamed of having a master bedroom with a white carpet. Now it has become the bane of Chris's existence as all he sees is the spots on the rug and he wants to get out the carpet cleaner and clean it all the time. As my neat and tidy little house falls to disarray all around me, I reassure Chris he is doing the best he can. It's just all those little woman touches that leave the house lacking.
Well here's the rundown of the can and can't do:
Can only use my right hand now. And that too is fading. By the end of the day it is useless. On the plus side I just now discovered using a stylus helps do things on my iPad. So the diminishing use of my hand does not leave me frustrated and sad, instead I am proud of myself for finding a new way to do things.
But now I don't feel like doing the list of can and can't do. When I sit back and think of life before MS it is just too painful to remember these thoughts. Now it's become a futile exercise in chronological notations. Thinking of life with MS before the wheelchair. Like remember when I was just walking with the cane? Or remember when I could transfer myself from toilet to jazzy blue? Or remember when I could drive my jazzy blue out onto the deck. I wondered, at that time, what it meant to get worse. I know I was in denial thinking oh this can't get any worse. But it did. So now I'm just grateful for what I know is coming next but has not yet happened. I know that eventually I will lose what is left of my right hand. I know that I will choke more and lose my ability to swallow. I know I won't be able to eat at all. So for that I am grateful that I can have hospice take care of me. They know that I do not want to be fed by a tube, or have nutrition pumped into me through an IV.
Which brings me to my next topic of thoughts. I think back five years ago about what was available to those of us living with PPMS. CCVSI:
CCSVI (chronic cerebrospinal venous insufficiency) was a trial procedure where they thought that opening the vein that led to the brain from the spine would increase the blood flow and solve all the problems of MS.
Well that was with the big news five years ago. I read about more failures then successes with this procedure so I did not even pursue it in my thoughts. Now, five years later, there is more talk about stem cell research. This is proving to be more successful, and patients with the relapsing types of MS are feeling that it is a cure. Even people with PPMS are saying it is halting the progression. Five years ago this would've been a dream come true for me. I remember when I had chemotherapy. They dumped small amounts of cytoxin into my veins to try to slow the progression.  It did not work for me at that time. But I do remember saying to Dr. Katz I understand that it's not a cure and it won't Restore all of my lost function, but it will stop me from getting worse. At that time I was still walking with a cane or a walker, I still could get myself washed up or have Chris put me in the shower. I could still get dressed sometimes with help sometimes alone, I could still wear pants and make it to the bathroom In time most times.  Oh if I could only have stopped the progression at that time. That is what the stem cell treatment is doing now. At that time I was probably a 4 on the disability scale. Now I am an 8 or 8.5. It makes no sense to try to stop the progression at this point. To make me be able to lie in bed and I have to have someone constantly care for me it's not an ideal place to stop. I do think about the parallel it has for people who had themselves cryogenically preserved to await a cure for whatever ails them. In that respect, perhaps having me still alive and perpetually preserved at this stage in hopes of a cure with nerve regeneration included.  But I also must remember that at this stage I am a burden for all of those around me who care for me and love me. Stem cell treatments is what is generating hope currently. It is being done in some other countries, but not here in the United States. It is still at trials stages here. Even if I did decide to pursue this train of thought it would cost so much money. I read that at this point in my progression the only place that would do it is in Israel. And it is $150,000 for the procedure. That does not include transportation and accommodations for the person who would have to travel with me, nor does it take into Account how difficult it is for me to travel. It makes me angry, though, that this procedure is not done here in the states due to FDA approval. On the one hand we are all grateful for the FDA to keep us safe, on the other hand people who are as desperate as I am to find some hope, even just a glimmer, cannot find this kind of treatment here in the states.
People are traveling across the globe in search of treatments. And some are finding ways to prolong their lives. I told my family right from the beginning I was not the type of person who would go globe trotting searching for a cure. So here I am now, just passing time alone in my bed looking out the window here in my shalom babayit.