christmas

Art Therapy

I keep hearing about art therapy and was going to try a class or something, but my schedule just didn't let me. So, I decided to do my own art therapy. I had the idea that I would paint something that represented MS to me. Now, keep in mind that I don't paint normally. My son was always the painter in the family, even though he hasn't really painted in years; he's into writing now. I decided I would take out his easel and paints and stuff he wasn't using (including blank canvases that just happened to be lying around) and just give it a whirl. I painted a brain and spinal cord and was going to put different things on them to indicate MS. I messed up the first try and did another one. However, I looked back on the first one and thought it looked like a MesS...just the thing, right? I went back to that and decided it would become the representation of the disease that was inside me before I knew anything about it.

 Then the second one would be more structured, more detailed. It would represent my understanding of MS now. That one I would metaphorically treat...I took different colored crayons and colored over the different aspects, each color representing a different medication or treatment. By this time I was having a blast.

HIDDEN

After all that was done, I painted myself over these images...myself from an old photo from before my diagnosis over the messy, misunderstood painting (I named that one HIDDEN), and myself now over the organized, treated painting (I named it CONTROLLED). I am very proud of myself for how they turned out. Again, I'm no painter, but this was a lot of fun and very fulfilling.

CONTROLLED

To Work or Not to Work...

     ...that is the question...sometimes.

The more times I need to call in tired, the more times I feel sick or have headaches, and the more summer days knock me down, the more I wonder how much longer I can continue to work full time. I'm not mentally at the point of investigating permanent or partial disability because knowing I will be giving up part of my income makes me uneasy. After all, I have become accustomed to a certain lifestyle. You know, the little things in life that are hard to give up...things like a consistent roof over my head, regular meals...you know little things like that.

Only in America

Americans enjoy many benefits that are not so available in some other countries. We are entitled to freedoms that are not so available in some other countries. However, most of us forget that besides being a free, democratic country, the United States is a capitalist country, and that is sometimes what takes precedent in the execution of the benefit. For instance, under the Americans with Disabilities Act (ADA) people with MS have the right to request and receive reasonable accommodations to help them perform their job functions. To receive these accommodations, the employee must document the fact that he or she has a condition that falls under the purview of the ADA and then detail the accommodation needed; the forms must be filled out by the employee and the employee's doctor, complete with amount of time it will be needed.

This can sometimes cause mental anguish for the employee. After all, it is sometimes difficult to admit to ourselves that we need help, never mind putting it in writing and discussing it with the doctor so he can detail everything. Once this is all done, you have to hand it over to the human resource department, so several people now know that you are not as capable as you used to be without extra assistance. That done, you would think that, since MS is an incurable disease, it is understood that this process doesn't have to be repeated because your doctor stated clearly that this is a lifetime condition.

Sorry, no. The ADA affords companies the right to ask for a yearly update/renewal of all the paperwork, including the doctor's statements and your requests before they will continue to provide the accommodation for you. So, if you are in need of anything that requires paperwork or any other steps, be ready to do everything more than once throughout the year. I am letting everyone know this because I realize that while all Americans know that we have the right to life, liberty, and the pursuit of happiness. However, not everyone is aware that that pursuit can be littered with hoops to jump through and hurdles to clear.

Back in the Saddle

So I felt well enough after my little bicycle mishap to get back out there. I was all set, I had a plan, and I was going to pay attention this time when my legs felt like they had enough. I went around one block, uphill, and then down and over to the next. I felt good. I went up that block and felt good enough to finish out to the next on before going back toward my street. I was so proud of myself. I was doing really well. YEAH! Right! A little over halfway up that block, I slowed down to a snail's pace, barely enough to keep the bike up. I could swear I was going up a huge mountain, but of course there aren't any in my neighborhood. No, this was the regular street that goes slightly uphill. Hmmm. Well, I made it. Barely. I really thought I was going to have to stop. I made it to my street where it went downhill again. I was so tired and my legs were so beat you would think I had been biking for hours. Nope. 20 minutes. Apparently that is my limit. I keep wondering when I'll be able to do more; when I'll be able to handle the uphill better. But, you know what? It's okay. If 20 minutes is my limit, then I will do 20 minutes whenever I feel I can go out there. Can't do it if it's too hot out or when I'm having a particularly bad MS day, but so what. I am doing what I can and hopefully my body is benefiting from what little I can do for it. It's all I can do, and I won't stress about it.