Disabled? What? - I Will Have A Cheeseburger.

"Disabled". What? Let me say it again. ahem (me clearing my throat) okay, here goes: "disabled". Nope, can't wrap my mind around it. Let me get the true meaning of the word.


dis·a·bled

Inoperative: a disabled vehicle. Impaired, as in physical functioning: a disabled veteran; disabled children. n. (used with a pl. verb) Physically impaired people considered as a group: the physically disabled

I still don't like the flavor of it. Nope, not at all. Although, it is such that I am, in fact, disabled, amongst those with a disability. I have a disability. I am one of the people for whom 'The Americans With Disabilities Act represents. And thank goodness for those fine folks. I have a handicapped parking sticker. Oh yet another word. Handicapped. I must go look that word up. Be right back.

4.	a physical or mental disability making participation in certain of the usual activities of daily living more difficult.

This definition seemed to fit best. I do think however that "usual activities" is quite vague and very subjective. Do you agree? This obvious sarcasm comes out in me from time to time. I am facing the test - and what a weird test it is. On the one hand I do not want to be labeled disabled, handicapped or be known as someone with a disability. And yet, not only do the words apply I have to prove the severity so my long term disability continues. Strange how 'they" expect the disabled to jump through hoops. Here's the bottom line. I can no longer perform my job. I hate to say it, but it is the God's honest truth. I can't do it any more. My evaluations and symptoms read something like this:-

Diagnosis - Multiple Sclerosis - since 6/30/04
symptoms:
- painful numbness/tingling in lower extremities requiring elevation of legs several times a day to alleviate
- extreme fatigue and overall weakness requiring rest and sleep several times a day to improve ability to function
- weakness in right leg which, if over-used, leg begins to drag .... and requires 24 hours to improve.
-patient can walk with assistance of walker with 4 wheels and a seat and or a cane in confined areas up to five minutes before requiring to sit. can stand up to five minutes.
- unpredictable painful spasms and muscle stiffness which take up to 20 minutes to relax
- poor concentration/focus - can involve in a task or project for approximately 30 minutes before focus is lost
-diminished vision - cannot read or be on a computer for more than 30 minutes or strain and blurriness occurs

TREATMENT/PROGNOSIS
Avonex injections
daily exercise for toning and balance as outlined by physical therapist
rest daily as symptoms require for fatigue and to alleviate pain of numbness and muscles
avoid heat
avoid stress
keep hydrated
PROGNOSIS:
symptoms can be managed if limits are followed. Symptoms will not improve. patient is not able to perform her job due to symptoms and managing of same.

So there you have it. Ick!

I do not feel all that disabled at home. And that's because I can manage my symptoms here, rest as needed, elevate my legs, sit quietly and watch nature, listen to music Out in the world, and certainly at work my limits/disability are so obvious.

I think we all have disabilities of one sort or another and we have to be honest about them and manage them as we should to be able to live as fully as we can. I know I have M S, and that it requires diligence on my part to manage. I also know that M S doesn't have me - and that I have freedoms in my life that are mine to enjoy every day. I have my weaker moments when I wrangle with "why" and give in to fear........and even entertain some self-pity from time to time. eeeeeewwwww I don't like that feeling at all! I know a few posts back I wrote about these upcoming months of testing in August and then meeting with my neurologist in September. Oh it is all so unsettling, so freeing, so frightening, so perfect in it's timing, so wondrous, so life-changing, so full of opportunity, so final, so new, so exciting, so sad, - it is a whirl of every emotion.
For today, I am status quo......I just enjoyed a burger and a beer in a frosty mug!!! Ah, paradise. Enjoy.............



Love Gail
Peace