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.

Thursday, June 11, 2009

The isolation of disability

When I first got hurt/sick almost 20 years ago now (wow, has it been that long?), I had a lot of friends. I had a group of people that I shot pool with, I had a group of people that I did aerobics and played volleyball with, I had another group that I just went out with and partied and did 25-year-old stuff with. I had a good amount of friends.

Then I started down this road of disease, surgery, chronic pain, doctors, yadda yadda yadda. Well, honestly, what 25-year-old who doesn't have to, wants to travel down that road? As I stopped doing the activities that I used to do, the friends that I did them with started dropping away. And it's very difficult to make new friends from the hospital or my bedroom. I spent so much time in the hospital and in bed that many of my friends just drifted away. It's nothing against the friends that I had, I wouldn't have wanted to hang around inside (and certainly not in hospitals) if I had any choice in the matter. Plus, I was going through a pretty awful depression, trying to find a way to carve out a life that I didn't want any part of. I was angry, and not terribly good company for a few years.

But that isolation certainly wasn't helping the depression. It became a really ugly vicious cycle of depression and isolation and more depression until, as I've mentioned, suicide became a real option that I had put on the table. I was sick, in a tremendous amount of pain that I didn't know how to deal with, and now I had no friends either. It was truly a recipe for disaster. If only the Internet, as it is today, existed when I was sick and feeling so isolated. That's most of why I am doing this blog; so nobody has to feel so isolated when they are at their most desperate. I understand the desperation of chronic pain. I was (and still am) so sick and tired of being sick and tired.

But as I look back, I realize that I created a lot of the isolation. Why is it that when we are hurting and need our friends the most, we isolate ourselves? I don't think that's just me; I've talked to other people who say the same thing. On my worst days, when I'm hurting the most, and in the least amount of control over my pain, I turn inward and don't want to talk to anyone. Perhaps my friends didn't drift away, maybe I pushed them away.

I have recently had reason to look back at some friends from a long time ago in need. And boy have they been there for me. As I have mentioned in this blog, Medicare is a funny (read: ridiculous, stupid, annoying, belittling, poorly run [got the picture?]) thing. They will not pay for me to have a manual wheelchair and a scooter. They figure that if I can still work a manual wheelchair, I don't need a scooter. So, because I don't want to give in, I only want the scooter for long distances and want to try to keep my arm strength as long as I can by pushing my own manual chair for shorter distances, I get penalized. Wow, brilliant system.

I love my manual wheelchair: it's light-weight with air-filled tires and cambered wheels. It's so light-weight that I can actually get it in and out of my car almost by myself (with just a little help getting it back in). I don't want to give that up! I want to use my manual chair as long as I possibly can. But I really need a scooter also so that I can go on longer outings. I can't go grocery shopping in my manual chair, I can't go out for a day to a fair or whatever in my manual chair, there's a lot that I just cannot do with it. But there's a lot that I can do with it. I don't want to give it up, but the scooters are about $2,000 all in, and I sure can't afford that. Before you think, "let Medicare buy a scooter, and buy your own manual chair," the type of manual chair I use also runs about $2,000, and I already have the one that I want.

Anyway, I was talking to an old friend about it, and she turned to my High School graduating class and others, and took up a donation for me. I was thinking she would raise about $1.37, but if she wanted to do it, I figured: go for it, I'll take $1.37. That and about $2,000 will get me my scooter.

Amazingly, she raised a lot more than that, nearly the whole thing!!! Understand that in High School, I felt like a self-conscious nerd with very few friends. And all of a sudden, many years later, they have been there for me in spades!! I am so touched and so grateful, I can't even find words to express it. How do you say thank you to people for giving you your independence? There is so much that I cannot do; with a scooter, there will be fewer things on that list. It's amazing really!!

To all of you who have contributed, thank you. It seems like a very small way to say how much I appreciate such a huge thing, but I don't know what else to say.

It's been a lesson to me too. I've learned that friends are still there, I just need to turn to them on occasion. I'm so fiercely independent that I find it difficult to ask for, and accept help. I'm just not good at it. Yet, if I don't ask, people just don't know what to do. It's hard to watch someone you care about hurt so much and know that there's nothing you can do about it. People want to help, but there's not much that anyone can do. When there is something that can be done, those friends are there. THANK YOU! Truly and from my heart, THANK YOU ALL!!!