It’s the Little Things

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Splinting; or, as I refer to it, gaining an exoskeleton, is the main option for relief of joint pain for people with EDS. I imagine someday scientists and physicians will look back and shake their heads at the primitiveness of such things, although maybe I’m just hoping that’s the case, and that maybe in my lifetime they’ll come up with something better. The first splinting I was willing to accept are my silver ring splints.

But, little thing; the one for my right thumb gets caught in my snips, scissors that are used throughout the garment construction process.

And, little thing; it would close down during the day as I wore it, and needed to be pushed back to open each time I took it off.

Little thing; it broke. They cost $81 each. Now I’m only wearing nine of the ten.

Next came splints for my CMC joints, which are at the base of the thumb. The first set were velcro contraptions with an insert that was heated and then molded to my hand. I would love to know what my insurance paid for them.

Little thing; velcro snags fabric like crazy, be that fabric I am using to make something or my own clothing.

Little thing; those splints cut my dexterity by about half, and both provided no wrist support and prevented me wearing any wrist supports.

I researched and found these (corollary finding: my occupational therapist at the time was not very knowledgeable of EDS, sewing, or splinting options) which have a less challenging form of velcro and a low profile that allows me to splint my wrists, too, if needed.

Little thing; they cost $75 each, and since I ordered them myself rather than through my OT, that’s out of my pocket, not my insurance.

For awhile they had me sleeping in wrist splints due to peripheral neuropathy in my hands that is sometimes indicative of carpal tunnel, and sometimes of ulnar nerve issues.

Little thing; it’s hard to sleep with big velcro braces on your wrists. Also, they are very hard to work in due to Velcro, clumsiness and general hideousness.

Sometimes I have to wear those splints during the day. I hurt my left wrist somehow last weekend, and I called my PCP to set up an xray. He asked if I was splinting and I said, dutifully and resentfully, YESssss. We both knew that was probably all we could do, although at that time I was suspecting I would find myself with a fully immobilized left wrist/hand by the end of the week.

Little thing: my PCP hasn’t ordered the xray yet.

Little thing: my wrist doesn’t hurt as badly as it did, so: confused.

Little kind of big thing: I have become allergic to my wrist splint, and wearing it for 12 hours resulted in hives. Left longer, those guys turn into blisters and raw sores. Perfect.

Readers of the old blog may recall my adventures in the knee brace arena, which I referred to Mystery Shopping Club as my insurance paid my Physical Therapist to search blindly through catalogs for various products that either weren’t right for me or, as we found out, caused hives, blisters and sores within hours of putting the thing on. I took one more stab at knee splint on my own this summer, and surprise; I am unable to wear it because it causes hives.

Little thing; take modest amounts of cash–$35 here, $50 there–and flush it down the toilet. No hives that way, at least.

I got this sort of ankle splint to sleep in at night.

Little thing; it won’t fit in a shoe because I have really high arches so it becomes wildly painful within hours.

Little thing; can’t just wear it on one ankle because that throws off my gait and hurts my knees and hips.

I switched to some compression type things. Mine are more butch than those in the link. I feel like I have a little less pain in my ankles when I wear them.

Little thing: they have started to eat small holes into that back part of my foot/ankle and feel like little knives in my shoes while they do that.

Someday maybe my whole body will be coated in some sort of 3D-printed silver exoskeleton (do not steal this idea if you think there’s money in it, either) and I will look like a futuristic Tin Man.

Little thing; there are way too goddamn many little things.

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