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When I was first diagnosed with a mental illness, I had the general mindset that a doctor would hand me some miracle drug and everything would be better. (After all, those Prozac and Zoloft commercials seem to imply something of that nature.) I quickly found out that finding the right medication is a trial-and-error process, and that it usually takes about 6 weeks to find out if one medication works or not…and then you have to decrease it and take another one. My psychiatrist – thankfully – used a very scientific method of only changing one thing at a time. That way, he could tell it was the Topamax that made my face itch, and not some other drug. The whole process took about a year and a half, and oh what a ride that was. But that’s another story.

I learned that while medicine can help, there is a lot of patient-managed care that needs to happen. Even though I have my medication cocktail sorted out, I still need to take my medication, practice coping mechanisms, notice when I’m having a flare up…

I guess I’m just used to having conditions that no one can really fix. Migraines, IBS, Bipolar Disorder, Fibromyalgia…fun little labels that mean I get to spend a lot of time on medical issues, going to the doctor, stretching, and trying to keep my body and life in balance.

So imagine my surprise recently when three medical treatments seem to have just worked. Like, really worked. (I hope I’m not jinxing anything by saying this.)

Treatment one: occlusal guard, or night guard. There is conflicting evidence about whether or not night guards can help night-time teeth grinding. Some people say not to use them if you have sleep apnea or other sleep disorders. (I suppose fibro might fit into that category.)

Still, I have a pretty bad time when I grind my teeth. It’s usually when I’m stressed, and I end up with a lot of jaw pain that often leads to migraines. I was a little skeptical, but since my insurance covered the night guard – wonder of wonders – I decided to try it.

It took a little getting used to, but I’ve slept better than I’ve slept in months – years, even. I’m not saying that this will work for everyone, but I think that grinding my teeth was probably causing some sleep disturbances as well. It is wonderful.

Treatment number 2: my wonderful, wonderful podiatrist gave me diluted alcohol shots to help with my Morton’s Neuroma. The shots are supposed to help break down excess tissue build up to relieve pressure on my nerve. I’m not sure exactly how it works. It seemed to get better at first – although my foot was still numb and tingly, but at least not in horrendous pain. Then the pain came back for a few days, and I was really worried I’d have to have surgery. Now, there is an occasional pang, but the pain is almost completely gone. I’m pretty sure that after a few more treatments I will be good as new. (Again, hoping I don’t jinx this.) Having a medical issue that’s treatable is just amazing to me.

Treatment number 3: custom-fit orthotics in my shoes. I suppose this doesn’t actually count as something that *poof* makes a problem go away. But I now have orthotics in my shoes to help provide extra arch support and deal with my flat-footedness. They make such a difference. I’ve even gotten an extra pair of shoes to wear in the house (ones that aren’t dirty on the bottom) so that I can wear them all the time. My feet hurt less, and I feel more in balance.

I guess these experiences have restored some of my faith in the medical profession in general. Not that I discounted medicine before – I’d just begun to expect treatments to only half work. Or to have a medication that works, but has horrible side effects. This was a pleasant surprise.

My body is all kerfuffled at the moment.

I have a Morton’s Neuroma on my right foot, which basically means that the tissue around one of my nerves there has thickened. As you can imagine, this is fairly painful. I started having a really bad pain flare – triggered by the foot pain, but spreading throughout my body. Add to that some depression due to all the pain…

I managed to see a podiatrist, and he started giving me diluted alcohol injections to break down some of the tissue. Or something. Don’t ask me exactly how it works. This has improved my mood greatly in some respects, as I’m not in as much pain. However, my foot just feels weird sometimes. Like there’s this ball of tissue that I can’t feel, so I don’t quite know where to put my weight. I’m hoping it’s not permanent or anything. The thought that it might be is slightly worrying. I need to call the podiatrist, I suppose.

Anyway, I’ve still been having a continuous pain flare of sorts. It varies in intensity. Not enough exercise, too much exercise, being thrown off balance because of my foot…it’s hard to get my body centered again once it’s gone into a really bad flare. I consoled myself yesterday by buying three new books, and I have a pile of books I want to reread. Currently, I’m alternating between speculative fiction and books on postmodernism. My dog is also an excellent console-r and nurse, as he likes to snuggle. Family and friends are being very supportive.

All in all, it could be worse. However, it is one of those things that’s just very frustrating. I was doing so well. I know this state of affairs is only temporary…

This could be seen as a roundabout way of saying that, while I’ll try to stick to schedule, updates may be slightly sporadic. When I’m in a lot of pain or I’m doped up on painkillers, it’s hard to write a coherent post. I have a few posts saved as drafts for occasions such as this one.

When I was in the 3rd grade, my teacher gave the class an exercise. We were given big strips of paper with the words “I can’t…” written on them. My teacher instructed us to fill them with things we thought we couldn’t do. My friend and I gleefully filled every centimeter with things we couldn’t do: fly, do algebra, dig to China, speak French…Our teacher then had us put the list of things we “couldn’t” do in a shoebox “casket,” which we ceremoniously buried in the schoolyard. She told us that limiting ourselves with what we couldn’t do created a self-fulfilling prophecy.

Years later, I got a similar message in group therapy. According to the psychologist there, your brain doesn’t focus on things like “no,” “not,” “don’t,” etc. So if you say something like, “I won’t commit suicide tonight,” your brain actually hears, “I won’t commit suicide tonight.” (A more effective way of framing that might be, “I will stay safe tonight.”) Basically, another example of the way you think about yourself determining how you will be.

People with physical or mental limitations are already coping with the effect of those physical/mental limitations (be they chronic pain, mood swings, side effects of medications, or what have you). Empowering yourself through the way you think and speak can improve quality of life and even improve symptoms.

Why is it, then, that our country’s [for me, the U.S.] disability support system focuses solely on what you cannot do? Determination forms evaluate how well you can function in terms of tasks in your daily life: cooking, driving, getting dressed, etc. I remember that when I first filled out one of those forms, I looked it over and though, “Wow, I am really disabled.” (This train of thought eventually fed into the pain/depression cycle.)

Positive thinking is left by the wayside as people with disabilities must pathologize themselves to get basic support systems that they really need. (Without Medicaid or some other form of insurance, I would have to pay $500 a month for medications.)

Our disability system is oriented towards paying the least amount of money possible to those who are deemed completely unable to support themselves. It’s a grudging, “Well, if you jump through all these hoops and prove you really need it, I suppose we’ll give you some money.”

Standard neo-conservative (and even neo-liberal) lingo also rails against those who “take advantage of the system,” “subsist off of government handouts,” and others who are just “lazy.” As though the limitations of disability are worth getting under $8,500 a year and jumping through the aforementioned hoops.

Meanwhile, the system has no trouble allocating roughly half our budget to military spending.

The stimulus bill provided a one-time payment of $250 to each SSI recipient. The bill also allocated $759 million (for fiscal year 2010 alone) for “continuing disability review” (CDR). CDR is basically a program that checks to see if people on SSI are still eligible. “Are you still disabled?” I recognize that this is an important question, but I am also troubled by a report by the Social Security Administration that asserts that, “Estimates continue to indicate that SSA will achieve a sav­ings in Federal SSI payments of roughly $10 for every $1 spent conducting additional redeterminations above our base workload volume.”

Our health care system if fundamentally broken. For gods sakes, people go bankrupt trying to pay their medical bills. I suppose it’s no surprise that the system for providing disability benefits grudgingly gives support only to those who are “most deserving” and “completely unable to work.”

Meanwhile, the determination process forces applicants into self-defeating and negative self talk. The application process can ultimately damage one’s self-worth, recovery process, and mental well being.

You may wonder, “What’s a better system?” How about a more nurturing and supportive system which provides a social and economic safety net to all individuals, regardless of how “worthy” they may be. Don’t hold your breath. I’ll keep hoping for and promoting a more compassionate and humanistic approach.

Note: I’ll try not to talk politics all the time, but I felt really passionate about this particular post.

My Etsy Store

A fibro-friendly item from my Etsy store

I've been working on making fibro-friendly jewelry. I'd love it if you checked them out by clicking the image above, or going to www.etsy.com/people/RogueCrafter

About Me

This blog is intended as a place for me to reflect on my own healing journey, in the hopes that others may also gain insight from my experiences. I've "borrowed" a line from Robert Frost's poem, The Road Not Taken:

'Two roads diverged in a wood, and I
I took the one less traveled by,
And that has made all the difference.'

I think the most important thing for me now is that I feel empowered to be a force for positive change in my life. And that, my friends, has made all the difference.

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