Thankful

The past few weeks have been exhausting. Between a hellish pace at work and my joints, I have been beat. Too beat to even think about having something witty, useful, or at all worth reading to write. And not hardly the energy to read anyone else’s blogs or answer emails.

For Thanksgiving, hoping to contain the general family mayhem, I had everyone over, knowing that the lack of TV reception would have them all eating and leaving in short order. Yes, I am devious that way. It was tiring getting up early when I so needed to sleep in, but rewarding to see my vegetables being eaten, eat my mom’s turkey and ham, and celebrate a new step-nephew’s inclusion into the family. And then, today I slept. And slept. And slept. I think the muscle pain may finally be wearing down.

I saw the ortho Tuesday, told him I wasn’t going to do the PT or see the neurologist again because I think his diagnosis was wrong. And he agreed, encouraged me to essentially keep being bullheaded, and said we will just take things as they come. I’m thinking I may be past the defensive medicine stage with him, so that is good.

The wound on my back from the removal of the carcinoma seems to be healing OK. It has stopped oozing, and the skin around it, that had started to break out and blister from the bandages, has calmed down and is looking mostly normal. The scabs are sort of half on and half off, and still itchy, but at least I can lie down on my back now when I sleep. Another good thing.

Most importantly, I have the desire to research again. Finding the time to do it will be the trick, but my efforts at learning Japanese and my interests in pop-culture and disability issues are all sort of coming together at the moment. My money, time and employment issues are the same dragging forces as ever, but my interest is back. And maybe even some of you will want to know what I come up with, despite my lack of useful affiliation with any institution and absence of peer reviewed publication? Or maybe I’m just at a stage where I no longer care about those things, and will just do what I want.

One of us?

Thanks to EDS Alert Newsletter, I learned that a Swiss doctor is speculating that Michael Jackson may have had Ehlers Danlos Syndrome. And if you don’t read French, you can read the article in mangled English, thanks to the power of Google Translate.

What do I think of it? Well, not much. I’m not big on following celebrities, so I have no idea if his symptoms really do match up with EDS. But even the speculation is helpful, I think. So few doctors have any clue at all regarding EDS. If a few of them read this article and start taking joint hypermobility seriously, then I will feel that something good has come from the circus that has arisen in the wake of Jackson’s death.

I could have done without that

Monday night was a hell night at work, the sort that leaves me knowing I will be in deep pain the next day. And when I awoke Tuesday to the sound of my cell phone alarm going off, reached over to grab it and then didn’t feel it despite looking straight at my hand laying on top of the darn thing, I knew it was going to be a long day. A long day in which the “highlight” would be a nerve conductivity study on my legs and lower back. Yippee! What could be more fun? Maybe a hair dryer in my bathwater? Oh well. While I didn’t expect anything useful to come from this study, it seems a necessary step since my doctors insist that joint problems can’t possibly explain my pain and dysfunction. These are, of course, people who note that I am “unusually limber” and then don’t want to hear it when I try to talk about family history of being unusually limber. (Any doctors who might read this: When your patient tells you what they consider to be an important part of their medical history, even if it doesn’t seem important to you, that would be a good time for you to shut up the train of thought in your head and open your mind to maybe something useful being shared).

It is a good thing I had several hours to get from my bed to the doctor’s office, because I needed every minute. I had hoped to stop at the hobby store and buy a sketch pad and some pencils, but being hardly able to move kind of ate into my time. As I finally threw myself into the driver’s seat of my car, I noted that my left foot was buzzing. Fifteen minutes later, it had gone numb. Hey, why should my hand have all the fun?

I got to the medical complex, parked in the closest available handicap spot, and wondered if I would be able to make it in. Starting up the ramp to the sidewalk, it looked like the answer would be “no” because I didn’t have enough momentum to force my left leg to swing forward. A woman maybe 20 years my senior was sitting in the vehicle next to mine, window down, watching me. “I’m stuck,” I said as I manuevered a few steps from the ramp, “…try again.” She laughed, “I have those days,” the way only someone else who has been defeated by an ADA compliant ramp can laugh. With her moral support, I got up to the sidewalk and limped the 20 feet into the building.

The staff were waiting for me, which was great. I wouldn’t have to fill anything out or even sign in. But then I was asked for my co-pay, which meant balancing to open my purse and dig out my wallet. I could feel my hip giving way and did what I have come to regard as the safest thing to do. I fell. No sense in fighting gravity. If I let myself fall, at least I can control the direction I fall. But it is damned embarrassing to fall in public. I fall in private nearly everyday, and just drag myself up. In public, I am a spectacle. Half a dozen hands reached out to lift me up. I chose the uninjured arm of a sturdy-looking man there with a hand fracture. It makes it easier to decline everyone else’s help if I can pick the person least likely to fall on top of me. 

I wasn’t hurt, but I was shaken and exhausted from the effort of having to get up right away instead of being able to lie there a bit. I wasn’t convinced at all that this was the last fall of the day, and I felt flustered for being the center of attention. I tried to read for the few minutes it took to be called to the exam room. As usual, the assistant started walking too fast. (Note to medical aides: If the person you are escorting has a cane, walk slowly. Stop to see if we can keep up.) In fairness, she did realize what she was doing before the door shut on me. That doesn’t always happen. And then she was careful after that. The 10 feet to the exam room pretty much took out the rest of my energy reserves.

And then, the electrician showed up. I mean, neurologist. I’ll try to talk about that tomorrow.

Doctoring time again

A few months back, I switched GPs, since I had moved and my former doctor was now 15 miles in the wrong direction. The new doctor is one of those who aggressively monitors cholesterol and weight and blood pressure and whatnot that I’m not really all that concerned about, since none of that has killed anyone in my family. Still, new doctor’s obsession with my cholesterol may be a good thing.  I told him that it is my leg pain that is my priority. So now he is intent on helping me with that so that it will move down my priority list and he has a shot at convincing me to use statins, which I promised I would consider if he could tell me what’s going on with the leg.

I’ve had mobility problems with my left leg since childhood, but they came and went and, when I was young, no one ever noticed unless I ended up flat on my face. And then it was chalked up to me being clumsy. And it never fully cooperated when I was bike riding; in a way that’s hard to describe, my efforts to push through it always dissipated in the hip. I certainly never drew attention to it, since I was already sickly and strange and didn’t need to add to my reputation as being weird by asking what other people do when their leg suddenly stops working.  Anyway, over the past decade, I’ve used canes, a walker, and the occasional scooter or wheelchair to get me through the increasing times of my leg’s unreliability. I’ve sought before to find out why it is getting worse, why it is constantly in pain, and if there is something I ought to be doing to arrest this decline. So, I go through this cycle of extensive, irritating tests that reveal nothing, with my questions about whether my hypermobility is causing it summarily dismissed.  

New doctor has sent me to an orthopedist, which I was hopeful about because the previous doctor sent me to a neurologist. Repeatedly.  And that was a deadend. Well, it was multiple deadends, but I suppose they had to rule out lesions. So, off to the orthopedist last week. And what does he decide? That I need to see a neurologist. Arrrrgh!

I have a nerve conduction study scheduled for Tuesday, and had a new MRI last week. Why, why, why? Why are they so convinced it’s a nerve problem? If it’s a nerve problem, why don’t they think it has to do with the hypermobility? Every single one of them notices it, but then says it couldn’t be the problem. Why not? Every joint in that leg slides around like a badly loaded stack of boards in a pick-up truck going down a dirt road. OK, yes, I just don’t want to do the conduction study, because I’ve had one before, and they rank right up there with elective tasering on my list of things not to do.

Oh, well. Maybe something will be decided. And then what? My daughter asked me that, and I really don’t know. It isn’t like I expect that whatever is wrong can be fixed. But I would like to slow down the decline, since I feel more and more divorced from that leg to the point that we’re barely on speaking terms anymore. And I realize I have to do something, because my main strategy of just ignoring it until I can’t take the pain anymore is deterring me from doing things that I need to do on a daily basis.

In other news, I bought a slightly used mobility scooter for my daughter and I to share on outings. It breaks down into small enough pieces that I can pick them up and fit them into the back of my subcompact. I need to practice with putting it in and taking it out, and putting it together. I suppose I should get to it.

Have I mentioned I hate migraines?

Sunday, I developed a migraine to go along with the shredding feeling in my joints. As a front moved in during the night, I lay awake hoping the weather would get worse, faster, instead of hanging on and on and on.

And so I got up Monday feeling as bad as I went to bed on Sunday. And then Monday was the worst, busiest, most hellish workday in quite some time. Afterward, I couldn’t even drive home for three hours.

Surely Tuesday would be better, right? Well, at least work was better. And the migraine had moved into my abdomen, clenching my head only every few minutes instead of constantly. And my joints were doing better.

Wednesday, I finally saw the doctor to get something for the migraine. There is no way that medication is worth $240. If I hadn’t already been sick to my stomach, seeing that pre-insurance portion of the bill would have made me nauseous all on its own. As it was, I had to pay $70 for something that didn’t do a darn thing for the abdominal migraine–unless you count the ability of a med to be vomited to be something worth paying for. Work went OK, in between the puking. Oh, and Doc? I appreciate your assumption that I would stay home and rest and take care of myself, but if I was to do that every time I felt pain or nausea, I’d need to go on disability. And how would my rent get paid that way? Not very well, thank you.

My migraine finally mostly broke Thursday. Yay! Did that expensive medicine do it, or the fact that the freaking front finally finished moving in? I suspect the front.
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Edited to add:

My friend Dr. Kindberg says that most migraine medication taken after a migraine has already started in earnest will take 24 hours to work. So maybe it was the Zomig working that broke the migraine. I’ve used it earlier on since, and have managed to ward off any lengthy pain, despite having spent the past month in the throes of moving house, which has disrupted all my routine. Still, that’s damnably expensive stuff.

A must read

I found, via Grand Rounds, a post at Universal Health all about the problem of Villainizing the Vulnerable in medical care. I have to say, I had never before thought of the problem in terms of Milgram’s Obedience to Authority, but it sure does explain a lot.