Thursday, October 15, 2015

Falling apart at the seams; Thanks EDS!

My body is really failing me, with widespread joint problems, in addition to everything else. It's really distressing when so much goes wrong all at once.

My feet are the most troublesome right now. I already have the custom insoles, and the podiatrist already took xrays. He said everything looks fine. I'm going to try a new podiatrist, but what can a new podiatrist really offer? I have a hard time describing the pain, as it is widespread. The insoles used to help so much. Maybe my feet are degenerating with the rest of my body, so I need a new pair of insoles after only a few years? But what if there is nothing to do for them? My apartment isn't wheelchair friendly. How will I care for myself, Wilma, my home, and make all the food? With so few steps I can take in a day, how will I get by? It feels pretty hopeless without new insoles that are somehow different.

My left hip has been subluxating a lot (it's a partial dislocation that resolves on its own, very common in EDS, but new for me). Mostly, but not always, it happens when I ride the bike. It is happening other times too, now. I can't keep exercising if it's stretching the joint out more each time. I'm working on finding a support belt or a brace that can help with this. I'm already doing the hip stabilizing exercises that I know. I may need to try compression shorts in combination with a trochanteric belt to hold the hip in place. I feel like there's an answer for this one. It's just hard to find. Because with my POTS, I start to go braindead after only a few days without biking. I absolutely have to find a solution to continue biking.

The other challenge is my right shoulder, which has started subluxating when I use the wheelchair. I've officially lost my independence in leaving the house due to all of these issues, which is hard to accept...again.

I have several decades left to go with this body. How will I make it through? I can't resort to daily pain meds yet. I already take so much medicine every day. My insides won't tolerate decades of daily pain medicine. And my digestion doesn't tolerate opioids anyway. Maybe medical marijuana will be an option one day. In Illinois, I think migraines and EDS are not approved for it, but Chiari is. So maybe I could try it. But it can be hard on POTS symptoms, like lowering BP and raising HR. And it's not without side effects of it's own. It's definitely something I'll consider, although I could never smoke it. Maybe an edible or an oil. Although I've heard it's all very expensive.

I'm having more trouble sleeping again, at least partially because my hips, shoulders, and knees are in pain, keeping me from sleeping. So, many days, I'm in a sleep-deprived haze.

Just for fun, my digestion has been worse again. I was once treated for SIBO, which seems to be flaring up again. But I was living in a different state at the time, and I don't have a local GI doctor. The treatment for SIBO tends to be a course of a certain antibiotic folllowed by probiotic treatment. I could at least try a new probiotic. But all of these treatments and braces cost money, which is rather short lately.

It's challenging thinking about scheduling more appointments when I'm having so much trouble getting around. And I don't have an EDS doctor, basically because there is no such thing. My geneticist that diagnosed me is in Baltimore. I guess there is a geneticist at Rush in Chicago worth seeing for EDS. I'm sure it will happen eventually. But I need to work on my feet first

It's so frustrating for my body to fail me like this. I feel so helpless, barely able to care for myself, much less run errands or keep the apartment tidy. I wish there were more I could do. I also hate that when all these issues crop up at once, I have to devote so much energy to my own problems. I end up feeling so self-absorbed and unhelpful to those around me. These stupid chronic illnesses really suck. Thanks for reading the update. Hoping for more positive news next time.