Friday, December 3, 2010

Discovering Unity

I will not quote statistics to you, but there are a lot of people suffering from M.S., guestimate 400,000. in the usa alone. I have befriended quite a few on face book and one thing I am noticing is that there is a special kin ship.

I can quarantee not one of us wants the dreaded disease, but the sufferers tend to rally around one another. I suppose I should be ashamed, but as an O.T. practicioner I hated working with M.S. patients. In the acute settings they were happy folk, but I always seemed to think that "they were gonna beat this thing!, Why are they so positive?" This was over 15 years ago and the options then were nil' to nothing.

I know find myself saying things like, " I"m not going down without a fight!" Or even better... " I have this disease, but it does not have me!" This is not uncommon in chronic illness, but it seems especially so with this particular disease. I can only hypothosise that its because of the unpredictable nature of this disease. What else can we do? Sit around and mope or try to make the best of what we have.

I know personally, I am physically an enigma. The size and location of my lesions generally result in some major gross motor problems. The neurologist looks at my mri's, meet me then repeats the process. My balance sometimes really sucks and I have assorted issues that pester, but for a monster C2 lesion.... I am a walking miracle. I have decided I am just not going down like that! Mind over body is my tune and I am not changing it!

I am watching the boards of the people taking the brand new oral med (all others are shots or infusions) and waiting now 4 more months while my doctor awaits the data. The downside to the drug would be that it is an immunosuppressant, up side little to no side effects. It also is showing up to be 3-4 more times effective than the present older meds. Will I rock the Michael Jackson Mask.... hells yeah! Will I stock up on clorox sanitizing wipes, absolutely! Will I bathe in purell, if I need to!

I normally don't fuss too much about my dis-ease, but I am finding a group of people who share one hell of a common bond. We all got this crap disease that we did nothing to catch and it affects our lives, like it or not!

I can say with all the new developments such as a surgery to detox the brain, the brain stem project I am dying to get into and now a new med.... things are looking up. I have been told to be diagnosed now may well be the best time if you have to be.

You will not find a more supportive group of people, so I just want to give props to my fellow M.S.ers and a thank you to my kind and sweet blog peeps! Life always seems to give you what you need and kind people must have been on my list! You guys rock!


The Katzbox said...

You rock. You received a diagnosis that you didn't ask for but you're expected to live with and live with it with grace. I'm still in awe at the sheer numbers of autoimmune diseases that we have now. In the 40s, I think we had 7 and now we have over 40. I'm a little fuzzy on the actual numbers, but it's startling.

Take care and keep posting...



jojo said...

Thank you Deborah,

It makes you wonder if we just didn't have the names in the 40's or if we have worked ourselves into this crisis, with a now, now, now society.

It's sucks to have to develop a crap disease to meet great peeps, but hey it's a positive and I'll take any of those!