Who do I think I am? nd what kind of nerve do I have...?

I have MS. It causes my body and mind to malfunction, if you will. It can be scary when I try to do normal everyday things, like put my make-up on or write a letter, because I can't execute these things any better than an 18 month old child. My hands are shaky or my body is having involuntary movements of something similiar to this situation. Is this problem going to get worse, or will it stabilize for good? What is my life going to be like when I am trapped in this body that I have no control over? And then I am reminded that others have it worse. Like a child with Rett Syndrome. She (rarely male) has something to say but can't say it. Or wants to look at something and can't reach for it, and even if she could her hands wouldn't hold it very well so she could exam it closely. Rett Syndrome is not a mental problem. The brain itself is hunky-dory as far as function, thinking and processing. Imagine you can't tell you mom that you like her dress, or that you want your hair in braids today, or that you're sad and just want to give her a hug. Many of these things can be understood, in general terms anyway, by those who are with her everyday, but this kind of communication leaves much to chance. What if you enjoy dessert but want more whipped cream? Or more pepper on your chicken? How is something so specific communicated? I get so frusterated (as do the people I am trying to communicate with) when I know what I want to say but the words won't come out. How do I tell my daughter to put put her shoes away when all I can do is point at it, and keep pointing until maybe I can get the word 'that' out. Who am I to feel sorry for myself when comparitavely I have it easy? And how can I in good conscience spread MS awareness and hope people will help find a cure for this disease when Retts is something much worse that most people have never heard of?

Crazy, I am

I feel a wee bit icky. Not nauseous exactly, but tired for sure. I had to work 9:30-1:30 today, Sunday, and then I came home and to the pool for about an hour with Ammi. I watched tv for a little while, and decided to take a quick nap before getting up to straighten the mess I made in the closet this morning looking for a pair of jeans that fit...that is, a smaller pair :-). Ammi 'woke me up' around 8:45ish. I rested a wee bit longer than I meant to. It's just after 10:30 and I've eaten dinner- leftover pizza- and kettle (pop)corn. Oh, and coke from a can. I have my MRI tomorrow morning at 9:45; I have to be there at 9:15. It's at Lewis Gale so I have to leave by 8:30. Guess I'd better go ni-nite soon. Alli's got a FB page a few days ago. A day or two before she left for St Louis with Mom. They will be gone for another couple weeks. She already has been gone 3 days. I just counted on my fingers, and yes, it's only been 3 days. It seems like way longer. I was just IMing with Alli's on FB and totally forgot what I was going to say. Oh well. That's my brain. Fart fart fart...my my brain that is. Ya know...brain fart. Haha, I crack myself up. Either because I'm wacko or because I'm actually funny. I think it surely must be the latter. I think I can totally tell I'm bipolar sometimes. The tone of this entry has a different tone than most of my others. Oh well.

Is My Initiation Over Yet?

So it seems slowly but surely my MS symptoms are becoming increasingly noticeable and frequent. People say that they hurt, but I didn't understand. (Mom has always talked about being sore, and like a jackass, I figured it was weight related, and kind of to-bad-so-sad. Now I get it. When I'm at work I'm ok, as far as pain goes, but when I stand up to walk I ache. Like I have done some really strenuous stuff- like unloading a moving van or climbing a mountain. And when I walk upstairs to get home I have to sit down as soon as I come in because I'm sore. At first it sort of felt like my legs were experiencing muscle fatigue, like I had run a marathon. They were kind of 'jelly-like.' my hands have been shaking, more noticeably in the mornings. It can be difficult to log into all my stuff on the computer at work because my hands don't want to go where I tell them to. But on a good note, Dr Harpold increased my dosage of Amantadine, so I can take some when I'm feeling stressed or like I'm getting ready to have tremors. Dr Deverter also gave me a relaxant as well for the me for the same thing. I've been not exhausted exactly, but having no desire to move when I get home. Not like I need to sleep, but I don't want to get out of bed. And last time I saw Dr Harpold and told him about the way things have been going he just said it is stuff that happens with MS. I get that. I can see someone out in public who has some sort of disability and it's not a huge deal. I mean, it's just life, right? Well I am a hypochondriac and I didn't do well as a pregnant person and that ended. Now my body is increasingly deciding to do it's own thing and not what I want it to do. And I don't like it.