>A Tale of Two Braces

>I feel a headache coming on. I need to vent. If you have no interest in my issues with my disability, go ahead and click the little X to close this window.

So as I posted on my Facebook page this evening:

Get this hilarity: I got a prescription for braces on my legs kinda sorta like Forrest Gump. My mother went to the instructed place to get the braces. They said they didn’t have any. Then they said go down to Walmart and buy braces. My insurance is supposed to pay for braces but this place won’t put out the effort to order them. I can’t afford braces! 20 bucks says I finally get these braces and they don’t help a damn thing. I don’t know exactly what they look like but apparently the lady said they can be had from Walmart. That sounds dubious to me, hence why I’m betting they’re not going to help. I have to jump through all these hoops though.

Well, then I got curious about what Walmart carries in the way of braces and my worries have been exacerbated. My only thought is maybe there are braces in the stores that are not listed online. I found only two types that might be what the doctor prescribed. Just look at the pictures:

I have a feeling it’s the brace on the right. It can’t possibly be the one on the left. A brace like that would only do damage to clubfeet. The doctor described the brace as something to provide padding all around the foot to relieve pressure because he wants to see if the cause of my pain is positioning, the clubfoot issue itself, or the spinal damage possibility. Theoretically, relieving some pressure should determine the real cause, and in turn, determine the best possible treatment. However, I’m worried because if it is the brace on the right, that brace is designed for a normal foot without any deformities. Strapping my feet in those things will force them straight like the shoes I’m banned from wearing and cause more pain rather than relieving pain. It may push me backwards in recovery than forwards. I’m concerned.

Part of me gets quite frightened about this whole thing and doesn’t want to know what’s wrong. It started as a simple thing: let’s correct my clubfeet. A lot of people have clubfeet. Damon Wayans, Troy Aikman, Mia Hamm, Kristi Yamaguchi, Lord Byron, Sir Walter Scott, Tutankhamun, etc., are all people who were born with clubfeet. Most were treated as children and went on without any further complications, except Tutankhamun. He hobbled around in specially made sandals and used canes. Still, he was the most famous Egyptian pharaoh in history! Here I am with the same clubfeet that all of those awesome people had, but I apparently have to face the added complication of possible spinal cord damage that is adding to my chronic pain. But nobody is sure about that. It could be but we don’t know yet. If my spinal cord is indeed irritated, the surgeon says he will not correct my clubfeet because it will put me through a lot more pain for very little result. The benefit has to outweigh the risk of breaking a zillion bones, cutting tissue, fusing things with screws and plates, etc., which has a lot of complication risk with such a surgery.

I suppose the real question I’m asking myself is, “Why does my case have to be so much more complicated and risky?” In a way, it feels like punishment for something, even though I know that’s not how the universe works. Just acquiring braces seems to be an uphill battle. Everything feels very complicated, risky, uncertain and completely out of my control. Those of you who know me are well aware that feeling a lack of control in something about my body sends me into panic mode. Honestly, I haven’t been a very easy person to live with the last few days. It’s a struggle for me to let go of the uncertainty. I struggle but I’m trying. “Let’s correct my clubfeet,” has become the most complicated and frightening thing I’ve faced in a long time. Either way I go in treatment, I’m facing serious risks from bone damage to nerve damage to further spinal cord damage. The surgeon is apprehensive about jumping into any treatment. That makes me apprehensive.

If I stop everything now and leave my feet as they are, I will never be allowed to wear shoes for the rest of my life. I will have chronic pain for the rest of my life. I will not be able to sit in my wheelchair for more than an hour or two without more pain and more narcotic painkillers. I thought about stopping this road but if I do that, I will never know if this road would bring me to a better quality of life in the end. Sometimes the hardest things we go through give us the biggest rewards in the end. I just wonder if I’m strong enough to go down this road. As a little girl going through surgery after surgery, I had the benefit of naivete and believing that doctors could fix anything. I wish I had some of that blind faith now.

3 responses to “>A Tale of Two Braces”

  1. Wendy says:

    >I have a feeling the pharmacy your mother went to had no idea what the hell the doctor wanted. I would call his office in the morning and explain the problem, and see if they know what company to use, because as you said, neither of those braces could possibly be what he wants you to have.

  2. Canti~ says:

    >Hey, chickie … the shoe on the right in the picture from Walmart is called a "cast shoe" … or as I refer to them "Frankenstein's sneakers".

    I had to wear them while I was having lymphedema treatment on my right leg. After my foot/calf/thigh was wrapped in bandages, I couldn't get a regular shoe on at all. Over two years of treatment, I went through several incarnations of that type of shoe, the most successful for me being one that looked like a glorified high-top because it gave me the best support in the long run. They still suck. They're certainly not meant to be any kind of long-term footwear on just a foot … they're really protection that goes "over" something else.

    As for the type of braces you need … there's no surgical supply places you can get in touch with? Raise some ruckus with the state … there's got to be a branch that is there to help people with disabilities. You deserve to get the assistance you need with a minimum of bs.

    If you need help, let me know, and I will see what I can do to help you navigate the system. Sometimes if you're too close to the issue, you can be overwhelmed with all the emotion attached to the situation, especially if you feel frustrated. Trust me … I know from experience.

  3. MoonDog says:

    >have you considered serial casting on your club feet?

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