Archive for 2011

>A Tale of Two Braces

Posted by Jessica Jewett 3 Comments »

>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.

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>They was my magic shoes!

Posted by Jessica Jewett 5 Comments »

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I saw my surgeon today and at one point I was having flashbacks to that scene in Forrest Gump. You know the one where the doctor straps on little Forrest’s new braces and lets him limp around the room in the clunky metal contraptions while he tells Mrs. Gump, “His legs are strong, Mrs. Gump – as strong as I’ve ever seen – but his back’s as crooked as a politician. But we’re gonna straighten him right up. Aren’t we, Forrest?”

And then the kid faceplants on the floor.
That’s me.
Today I feel like the kid that faceplanted on the floor even if it is for my own good.

I’m no stranger to this song and dance of consulting with a new surgeon, diagnosing a problem that I’m well aware exists, and then planning out the best surgical option. I’ve been through this a hundred times. I was already nervous about it going into the appointment because – let’s face it – there is a reason why I take medication to control my anxiety issues. I filled out all the paperwork, spoke to the nurse for a bit, and then the doctor brought a student with him. No surprise there. I’ve spent my whole life being a teaching tool for students. The doctor asked a bunch of questions about my medical history and then he started getting into the nitty-gritty about the nature of my pain. At least he knew what Arthrogryposis was. That’s a start. He pulled and twisted at my feet while I gritted my teeth in the chair and made little sounds like he was taking mental notes.

It all boils down to uncovering the true cause of my pain, he said. The surgery to correct my clubfeet, he said, is very difficult and involved, which I already knew, and he is very hesitant to put me through such a rough journey if I’m still going to have pain afterward. To him, it’s like inflicting so much more pain for an outcome that won’t change anything other than the visual of flat, fused feet. He said it might be possible that the spinal fusion I had in 1989 caused irritation on my spine with bone spurs that grew afterward or basic human error during the surgery and the irritated spinal cord is making my feet hurt a lot. He has seen people who have had spine surgery come in later with very painful feet.

So now the goal is to figure out if my pain is caused by my actual clubfeet or if it’s caused by spinal cord irritation. In order to determine the cause, he gave me a prescription for special braces. Cue Forrest!

“They was my magic shoes!”

 
Yeah. My brain went there. I’ve had braces before and they looked just like the Forrest Gump braces and they were very uncomfortable. The doctor explained, however (perhaps sensing my horror), that these braces are designed for padding so that a person’s feet feel nothing like pressure and such. I have to wear these braces for a month at least and I have to keep track of my pain every day until my next appointment on February 7. If I’m having pain all the time with no real rhyme or reason to it, then the cause is most likely irritation on my spinal cord. At that point, my spine would undergo serious evaluation and treatment would either be pain blocker injections in my spine (this is where I started feeling woozy) or actual spine surgery where they insert some medical doohicky to control my nerves (bring on waves of nausea). If my pain is caused by pressure and affects of being afflicted with clubfeet, then I would undergo serious foot reconstruction surgery. It’s intense. It’s a long recovery. I will probably wish I was dead.

And then he casually dropped the last bomb. I can’t wear shoes anymore. Like, ever. Forcing my feet into shoes is only causing more agony and will cause pressure sores very easily. Leave it to a man to casually mention to a woman that she’s banned from the joy of buying and wearing pretty shoes as if it’s no big deal. Call me vain but wearing braces every day of my life (supposing he chooses not to operate) is going to draw more attention to my disability and make people stare at me even more. I don’t like it. I have to do it but I don’t like it. If I have to wear ballet slippers under my big ugly braces to feel like a lady, then I will. My best friend and my mother are talking about decorating my braces to be more fashionable to make me feel better. I got so upset after the doctor left that I got sick. I’m upset because I didn’t see the possibility of spinal damage from a surgery I had 21 years ago causing me all this pain now. I was fully prepared to talk about rebuilding my feet. I was wholly unprepared to talk about operating on my spine.

So, I guess on February 7, the doctor will know what’s causing my pain. I will either go toward foot reconstruction surgery or I will go toward spinal injections/surgery at that point. Now it’s just a waiting game in my magic shoes.

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>Dressgasm of the Day: 1880s blue and ivory

Posted by Jessica Jewett No Comments »

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I think this dress is from the 1880s but I’m not that great with dating late nineteenth century dresses, so I might be off by a decade or two. I took these pictures from an eBay listing, as I typically do, and I was attracted to the simplicity of it but still the attention to detail.

This is a one piece dress, meaning the bodice and skirt appear to have no separation whatsoever. I can’t tell what the dress material is exactly but it appears to me that it’s too coarse to be silk alone. It may be wool or cotton or linen or some type of blend of those fibers mixed with silk. Someone with a better trained eye might be able to tell what it is. The main color is a medium to light blue but it might have faded over the years from a darker shade. A double row of buttons lines the bodice, past the waist and about a third of the way down the skirt. They might be ivory or some type of stone.

The real beauty of this simple dress is the ivory floral detail wrapping around the bottom third of the skirt, up along the bodice, around the neck and around the cuffs of the sleeves. It appears most likely that these details are some sort of applique work or they might be mixed in with hand embroidery.

No doubt the owner of this dress was a lovely lady with simple tastes who knew how to spice things up a bit when needed.

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