Where once I would NEED to write posts just to stop thoughts and memories and terrors from swirling around in my mind. Now, I dread it.
Where once I had Physical Therapists, Occupational Therapists, Speech Therapists, Visiting Nurses, etc... to help me improve...I have no more.
It has been over 3 years since my diagnosis of MS. What residual symptoms I have now, I will have forever (plus more in the future). I am not being pessimistic...its just the nature of the beast.
Where I once wanted to share my stories and my symptoms and my experiences...I now want to block them out. OK, Instead of "blocking things out" i will used instead "the power of positive thinking". "A positive person anticipates happiness, health and success, and believes he or she can overcome any obstacle and difficulty", Remez Sasson. I spoke to a friend the other day, that has MS as well, he (after 35 years)fully believes the same.. It seems like all the research and breaking treatments out there for MS are to prevent the disease. They aren't to reverse symptoms. Sometimes I feel like an old saggy woman in a convalescent home. No one is focusing on making her life better, its just tending to her until her time comes. Yeah, there's some rumors swirling around out there of stem cell treatments and new drugs and such but it is years and years away. Too many years to reverse symptoms that are years and years old.
Positive thought seems to be the way to go. When you think positively, you can actually block things out and forget about them (or try to convince yourself to at least). I mean, I cant completely but I can try. For instance, when I take my evening walk, since I am blind in my right eye, every time I turn a corner to the right.... well....I have to turn my head like an owl to check for oncoming traffic before I make my turn across the road. I try, however, to quickly tuck this away and not dwell on it. There are about 1000 more examples a day similar to this.
So, for now, I dont feel tired. I dont have pain. My vision is not a setback. All these other annoying symptoms are not so bad.
I must say, I have been great lately. It is difficult to say whether its because of posiitve thought or my lesions are just completely dormant at the moment. I remain on medication, as I will for life. My 28 day Tysabri infusions are the strongest and most effective available. It is the best option for preventing future attacks of MS. So, I let the medicine worry about the future. For now, I'm good. I have been leaving my Service Dog at home(which doesnt thrill my husband). However, its difficult to tote around a Service Dog everywhere and not let it remind you why you have it. I did go through training and got Crane and I certified as a Therapy Team. So, we can go out and spread some cheer through hospitals and such.
What else..... My neurologist left Yale. This fact shook me for a few months. She is like a life line for me. I remember seeing her for the first time and having to be pushed into the exam room in a wheelchair. Not only could I not walk at that point, I couldnt sit up either, without feeling completely sick. Now, look at me today. Could another doctor have had the same results? Sure. However, I see her as the one who was able to turn me around. I hate the thought of leaving Yale. I love it there. They are the best in the field....but then again... So is DR Bailey and she left. She now practices at The Mandell Center for MS at Mt Sinai. I have been to see her there and I am not sure how I like it. I suppose time will tell.
So, back to my blog... When I write, I write about my MS symptoms and how they affect me and others around me. Well, the symptoms that remain, I just dont want to talk about. I dont want them to affect me and I surely dont want them to affect those around me. Sure, I have things that affect me on a daily basis, but for now, those are mine.
