The chorus of this song by Rod Stewart pretty much sums up how I'm feelin' right now. I wish I could go back to being five-years-old, to when my body wasn't deformed from scoliosis or a poor-fitting wheelchair. To when, if I'd had the kind of therapy and aids available today back then, it would have made a world of difference. I could have had more strength, more mobility, more independence. Mom thinks I could have walked with the aid of crutches. Who knows? Perhaps she's right. I just wish I knew what I know now when I was younger. I wish I knew or understood then how important therapy and posture is, how much more strength and mobility and capability I could have had now.

I know, I know. No use crying over spilled milk. No use in wishing to go back in time, for it's something we--I--can't do.

I wasn't going to mention this, as I didn't want to make a big deal out of it. But I'm feeling vulnerable and overwhelmed and...and deformed. I'm feeling unsexy and lonely too. Nothing like a wheelchair renewal and subsequent evaluation of all your...range of motion, strength and muscle control to make you feel beautiful and capable!

*sigh* Two weeks ago my physical therapist gave me an ultimatum of sorts. My scoliosis has progressively gotten worse over the last two or three years since she last worked with me and so has the position of my feet. In fact, since I got this chair, the Rainbow Serpent, I've experienced shooting pains in my ankles, mostly in the left on the outter side. My feet have begun to roll in and turn outward. Sounds painful, eh? It is. Gina says the reason it hurts so is I'm most likely ruining tendons and ligaments in my foot. In fact, if nothing is done about my feet to stop the deterioration I could lose them due to poor circulation and the poor positioning. That is her prognosis. Lovely, cheerful thing to hear, isn't it? And she hadn't even begun her prognosis regarding my scoliosis.

Her ultimatum was I need to decide what it is I want from therapy before she can do anything to help me really. Did I come back to therapy (after a three year hiatus) simply for a new chair, or to just get through my days pain-free? Or did I come back to get more mobility and to keep my strength up while working towards the goal of bearing weight later on? Just what do I want? She made it sound so overwhelming and dire I broke down into tears on the way home. I felt like Quasimodo, the Hunchback of Notre Dame. Deformed and ugly, and I blamed myself for not continuing therapy after finishing finals that one semester three years ago.

Gina didn't want me answering her right away. She wanted me to seriously talk about this with my parents and the three of us to think about what my goal for therapy is. I don't blame her, for this is serious and something does need to be done about my positioning. But I know what I want. I had a reason and a goal in mind when I started again last month. I wanted to keep up my strength, become more limber and mobile. And now, with Gina's ultimatum, I have a two or three step process plan in mind. The first step is to stop the pain and to correct my feet's poor positioning. The second step in my therapy, as I see it, is to continue with my range of motion and stretching exercises, while working on mobility and other skills like dressing and transferring. A lot to ask for, I know, but...basically that is what therapy is for.

It's been agreed upon that this chair must go; it does not fit me at all and has been a lemon from the get-go, repair and positioning-wise. It's been a pain--literally--in my ankles and feet almost from day one. So, as of last week we have started the process for getting a new wheelchair. It's going to be quite the battle with Medicaid I fear. For, you're only allowed a new wheelchair every seven to nine years, and I've only had this lemon for three. (It has seemed like two years--two veeerrryyy long years--in regards to this chair. And no, I haven't had fun though time, in actuality, has gone by faster than I thought.) Medicaid isn't going to be willing to pay for another chair so soon. It's going to try and deny us at every turn it can...just you wait and see.

Today at therapy we took more measurements. Instead of inches, like from knee to heel, etc. Brad, my occupational therapist, took measurements in degrees. How far my knees and hips bend and straighten, for example. He and an intern also tested my strength in both legs and arms. My legs tested a three out of I don't know how big a range. My arm strength is a five. =os

"Posture's poor, trunk strength is almost non-existant. Pelvis is rotated, spine is rotated 23�." Brad listed my posture's lack of normalcy and my limited capabilities as he wrote them on the chart to document what is wrong with me. What I need. The key here is to make everything sound sssssooo bad Medicaid has no choice but to agree I need a new chair. I know it's necessary to get what I need, but hearing how badly deformed or twisted I am and how limited in strength and range of motion I am is depressing. It brings home in a harsh light how different I am from my family and most of my friends. It's a negative reminder of how dependent I am on others for help and my care. And a dismal note on my love life. One that has cautioned me not to be too disappointed if I remain a Kumari, a spinster the rest of this life. *sigh* It's just...depressing and overwhelming right now.

Like I said, I wish that I knew what I know now when I was younger. I would have worked hard and not complained so much about having to do the exercises. I would have endured the pain better and not have fought the therapists. I wish I was five again.

moon phase