When last we met, I was venting about my terrible, horrible no-good, very bad day going to the neurologist. Why is it that, I say "I have this pain," the medical response is "maybe there's something wrong with your nerves!" Oh, fine, Doc, ignore everything else I am telling you. Let's placate you with playing Tiny Taser.
The neurologist was very nice, I must say. She did the usual poke, poke, pound, pound, before doing the electrical conduction test. What is an electrical conduction test, you ask, all doe-eyed and innocent. Why, it's two horrible things put together: being stuck repeatedly with needles, and being zapped with electricity! Yay! Doesn't that sound like fun? Doesn't that sound like it would be even more fun if you werealready so tired and in so much pain that you could barely pull yourself around? One thing it does, besides give you two kinds of pain you could have done without, is contract your already worn-out muscles. Yay! There's nothing better for exhausted muscles than forced contractions! Except the prospect of going to work right afterward and having to be on your feet and dealing with people.
After my torture session was finished, the neuro asked me to walk around a bit, which I did as much as I could, which is to say, I collapsed a couple of times when my leg buckled. Then we looked in tandem at the MRI results. I was pleased with this turn of events, since the previous neurologist I had seen not only didn't show me my MRI results, he hadn't seen them himself. The upshot of the whole thing was that she doesn't see any substantial nerve involvement. Some narrowing in a couple of discs and some bone spurs in the spine. But not enough to cause all my problems. This is no surprise to me, because I'm pretty damn sure that most of my problems come from the way my hip and knee slide all over the place. But what do I know? I just a person who inhabits this body.
So, let's go on to this week. Monday. Time to see the orthopedist for the follow-up. He tells me essentially the same thing as the neuro, and I tell him that the neuro had already told me all this, and that I wasn't surprised by it. Certainly not disappointed.
That's right, he says. If the nerves were involved, that would be very bad. All the things with the nerves would be huge problems that he couldn't do anything about.
Oh, I say, brightening, then what can we do?
"I can send you to a pain clinic for cortisone shots or you can do PT."
Now, this is not happy news, and I made that clear. I think I looked like I was about to cry, because he suddenly looked like he realized he had made some bad suggestions. I explained that I have done PT before, and that I found it pointless and exhausting. That I am open to PT only if it is going to do something to stabilize my joints. That I want pain relief, but not pain relief alone. That I need to be able to keep my job. That I fall down. Often.
Now he looked at me as if for the first time, as if I had mentioned joint instability for the first time. Jeesh. It was asked about in the new patient form. And I told him face to face. Really, why do I even fill these things out or bother with offering information before a doctor has done playing House?
"Do you use anything now to help with the instability?"
Duh. What's that black thing propped up in the corner next to me? Oh, yeah. It's called a "cane."
"Maybe a quad cane? Or a walker? Or a wheelchair?"
All that would be fine, I told him. That I actually have used those things under particular circumstances. Except that I couldn't use them and do my job. I explained about my job, what I do all day.
"There's nothing I can do, really, for intermittent instability."
"I wouldn't call it intermittent," I replied.
"Well, you don't fall down all the time."
No shit, Sherlock. This hardly makes me the Rock of Gibralter. There are houses of cards that stay up longer than I do, though. That's what I wanted to say. What I said was:
"There has to be something. I can't keep falling down at work. And I can't keep having this level of pain and get through a work week. Isn't there a brace or something? Can't it be that the joint instability and the nerve compression in my spine are making things worse together? Can't we do one thing to help?"
At this point, he finally thought to ask about my instability in my knee. He wanted to know which direction it is unstable in. That's easy. All of them. I showed him, saying that I'd be glad to just reduce the overall instability somehow, that maybe that would help the hip and the pain.
"How about a knee brace? Have you tried that?"
Oh, at last, we have gotten somewhere. No, I haven't tried a knee brace. Not a real one that actually fits and doesn't ride up or down my leg and lasts longer than a month of daily use. (Why haven't I? Because such things are prescription, and look at the trouble I have had in just getting this far. I swear, every medical device I have ever had prescribed has been gained only by me insisting that Something Be Done Now.)
So, now I have a knee brace that does seem to offer some degree of stability. So, that's nice. Though, so far, it hasn't actually helped with the pain, I am hopeful that it will after I get used to it.
But I told you in the subject that this experience is depressing. And it is. Because the reality is, I need to find another job. One that pays at least as much, if not more, and also has health benefits. And that I can use a quad cane, a walker, a wheelchair, while doing.* And I need to do it soon. In this economy. And I have to tell my supervisor this, because she is also my friend, and depends on me, and I don't want her to find out only when a reference check is made.
*There really isn't a good way to make my current job work out. The department is underfunded, understaffed, and overworked in an inappropriate facility with inappropriate furniture. Just ask the short people who have to get files out of the top cabinet drawers. We'd all love for our offices to be the experimental model for universal design. We'd also love to win the MegaMillion Jackpot.
I know things are very different in the UK, but here there would be government help to enable both you and your employer to keep you in that job. I just wonder if there's anything like that, any kind of grant that you could apply for? Because ideally for everyone - the whole of society - you would get to keep your job with a walker or wheelchair and your place of work would become more accessible for future employees.
I also wonder whether the pain clinic might be able to apply more imagination than your neurologist? They do deal with people with all sorts of different problems and priorities.
In any case, you have my great sympathy. Best of luck in moving to a place when you're more comfortable, both physically and with your work situation.
So sorry its been a trial for you to get this far. Did your ortho suggest a custom brace??? Those work better than the off-the-shelf kind for the knee. I have one. Ask to be seen by a good LPO. It takes a script but might well be worth it. My brace stabilises the knee, but I still do have some pain for which I take medication.
Regarding your job, you might want to schedule an appointment with Vocational Rehabilitation, also check with your supervisor and HR person about accommodation rather than giving up on the idea. The website ADA.gov has information on ADA and workplaces and you might check to see if there is some sort of ADA liason for your county that could give you and your employer information and help.
I'm dreadfully tired this AM, but those are just ideas out of my head. Let me know what you find out and I'll see what else I can think of. Lots of work, but don't give up.
Yanub, I would check with vocational rehab too. :)
They may be able to help with securing accommodations or helping get the place more accessible without you doing all of the work/advocacy--that takes the pressure off you. I wish I had talked to them at my last job; if your income exceeds a certain amount you may have to pay, but I don't think it would be a lot and might be well worth it to keep you in your job.
If you have to quit or will have to quit a job because of disability, also talk to vocational rehab.
I empathize with your journey and its frustrations. I too had a mysterious condition with pain being a big symptom. One thing I learned in bouncing from specialist to specialist is that is pays to keep looking for the best specialist. The middling ones I met sounded just like the docs you encountered. The best ones listen well and have superior knowledge - and can really help.
I hope your journey gets easier.
Ugh. I had a nerve conductivity test when they were trying to diagnose me. I asked the NON neurologist who was doing it if it would hurt; his reply? "Most people tolerate it pretty well."
This translated to Lisa being electrocuted for g*d knows HOW long, lying there, gritting my teeth with tears streaming down my face... at one point he peers over at me and asks if I'm ok, as though he's surprised it HURT LIKE HELL!
I was just like 'hurry up and get it over with' hoping for an answer.
When he did my 'good' (uninjured leg) it didn't hurt one bit, just felt like a TENS machine in physio.
He said he was going to skip the other part where they put NEEDLES in since I 'didn't seem to tolerate that too well' as though it was some shortcoming of mine!
I asked if he at least saw something on the test...? He said 'everything looks normal'.
I bawled inconsolably on the way home, after feeling like i'd literally been tortured for no damn good reason.
Hence, I really feel your pain. :(
I REALLY hope the bracing is of some help...
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