Friday, June 12, 2009

Have you tried .... ?

One of these days I am going to post a FAQ page on this blog. There are just some questions that I hear so often. And really, I don't mind the questions; I understand that humans are basically a curious animal by nature. I never want to be that "angry crippled girl" who makes everyone uncomfortable. But sometimes, just sometimes, I want to have a brochure handy for those often asked questions.

First of all, I'm dealing with a disease that most people have never heard of. People see me in a wheelchair, or they see my pretty-unusual-scar (to put it nicely), and people want to ask "What happened?" But I don't have a cool story. If I could just say "car accident," or better, "helicopter accident," that would be cool. But my story isn't anywhere near that cool! So I explain as best and briefly as I can (depending of course on who asked - inevitably it's employees of restaurants and grocery stores).

The second question is generally, "Have you tried .... ?" I don't mind hearing about any type of treatment for pain that anybody wants to tell me about, really I don't. At this point, I will try just about anything short of hanging upside down over a vat of boiling oil. In fact, there are some days when the pain is so excruciating, and I just can't take it anymore, that I might even try that. There are a lot of Eastern practices that have value, and I certainly don't know about all of them, so bring on the information. I've tried acupuncture, acupressure, massage, hot paraffin, vitamins and oils, supplements and herbs. As long as it can't hurt me any more than I already hurt (I hope), why not give it a try?

But really, some people ask the silliest things. I am seeing one of the leading specialists in RSD, pharmacology, and pain management. I see a leading neurosurgeon. I have been to a lot of hospitals and pain clinics. I have tried temporary and permanent epidural catheters; I have had multiple TENS units and an implanted spinal cord stimulator; I've had local, regional, nerve, and nerve bundle blocks; I have done more drug studies than you can poke a stick at; I have had so many procedures and surgeries that I have quite literally lost count; I have had discs fused and nerve conduction studies; I have tried all of the opiates and other medications available (my pain management specialist has a second degree in pharmacology - he knows his drugs); I have had an implanted, intrathecal (1 level below epidural - closer to directly on the spinal cord) pain pump; I was chemically paralyzed for 3 days to try things like continuous positive movement devices, local blocks, and who knows what all; I have been through rigorous and horrifically painful physical therapy; and I'm sure there is more that I have forgotten than that I can remember. I've tried it.

Don't you think that if it was as easy as "eat more leafy green vegetables," that one of my many doctors would have thought of that? I really don't mean to disparage, I appreciate advice - you never know, there may be something new or something I haven't heard of. With the amount of pain I live with each and every day, there isn't much that I wouldn't try just to get one day outside of my personal torture chamber, just one day of relief. But really, "Get more sunshine and vitamin D?" You're stopping me in the streets to ask if I've tried mega doses of vitamin C? Really??

I know people are trying to help, and I appreciate that, but it really does get difficult to listen with a smile when you know what's coming. Please don't get me wrong, this is my issue, not the person who's asking the question's. When somebody asks me questions or offers advice, they are generally doing it with the best of intentions. There's no malice intended; they don't know what I have been through, they can't know all that I have tried and how long this has been going on. I truly believe that people mean well and just want to help. It's my issue that it's been so long and so horrible that, by now, I've tried it all.

I guess it comes down to: While I'm tired of answering the same questions, I never want people to stop asking, or to stop offering advice. Maybe the questions suck because I know that there aren't any good answers. I'm reasonably sure that when someone starts with "Have you tried .... ?" that the answer will be "Yes, I've tried that, and it didn't help." Not that I would ever say that outloud, I never want to hurt anybody's feelings, especially when they've gone out of their way to try to help; but in my head, I know that there just aren't anymore answers right now, and I HATE that. My doctor has emptied his bag of tricks, and I'm still in more pain than I know what to do with.

But who knows, maybe the next person who asks "Have you tried .... ?" will have something new, and maybe it will help. So bring it on!

And keep watching, I am going to post that FAQ.


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