Saturday, May 1, 2010

"My Own Disablism" Or "The Self-Hating Crip"

I don't know who or what I am anymore, but I feel like a traitor.

No one reads this blog, so I'll recap some events. In November, I got arthroscopic surgery on my left knee because I could no longer stand the constant pain I was in and it was hoped that the surgery would alleviate some of that pain. The fact that the surgery would possibly allow me to walk without a cane for the first time since 2001 almost didn't matter. The success rate was low, but the pain was terrible and I had to risk it.

The surgery worked. Mostly. I should be off the cane by the end of the summer. The doctor says I'll still have to carry a folding cane in my bag, "probably forever" "just in case", but if I hadn't gotten the surgery I'd have been an almost full-time wheelchair user within a year or two.

The pain, however, has improved, but is not gone. Not by a long shot.

I said, often, that if I was just on the cane but did not hurt, I would never have even considered the surgery. And now, after I got it - I'm getting off the cane, but I still hurt. Add to that all my other health issues, most importantly my mental illnesses, and I have gone from visibly disabled to invisibly disabled.

Before the surgery I was afraid that if I could walk normally I'd lose my identity. If I was no longer disabled, I'd cease to be me. I knew that was wrong on many levels, mainly being my disabilities do not define me, but also that even after I'm no longer visibly disabled I'll still be invisibly disabled.

I've always considered other invisibly disabled people to be disabled, so why am I having such a hard time wrapping my head around my mental illnesses, health problems and nerve damage counting?

Not only that, but I feel like I've betrayed the disabled community. When I next see wheelchair-using acquaintances in situations where I would have previously needed to use my wheelchair (like at a comic book convention for example), what will I say? I've formed bonds of solidarity spending nearly a decade being a fairly militant crip. Now I've gone all walky.

I didn't mean to be a traitor to the cause, I just wanted to not hurt all the time. And I couldn't even get that. I feel like I betrayed you all, and for what?

I'm going to keep fighting as I always have, but I don't know what good it will do anymore. When I continue to fight for curb cuts and increased handicapped parking as a person with no mobility issues, I imagine I'll have a hard time being taken seriously.

I don't know why I feel this way. Everyone I know tells me I'm being ridiculous, but they're all able-bodied and mentally-well. This is the first time I've said this to anyone in the disabled community.

So, this is my confession. I'm a disablist, I'm a self-hating crip. Or am I about to lose the right to use that word?

Right now my bipolar is Slightly Depressed.

Right now my pain level is 6.5.

By the way, if you're interested, you can check out my other writing at my geek news website, The Nerd Signal.

Saturday, April 24, 2010

Oh yea, I have a disability blog

I know I haven't updated this blog in forever, but I've been really busy with my other writing. I said last time I was considering writing more, I didn't intend to neglect this in the process

Anyway, an update.

My knee is healing amazingly well. I saw the orthopedic surgeon last week, and he was blown away by how well I'm doing. He figures I only need another six weeks of physical therapy, and I should be off the cane completely. My insurance company, however, is of the opinion that I'm done with physical therapy now, and that I get no more visits. Not because they think I'm already better, but because they think I'm not getting better fast enough. So, yea.

What I'm apparently going to have to do, since I might not be able to go to PT anymore, is do even more at-home exercises. I don't really want to start walking around the block, but it looks like I'm going to have to.

At any rate, I'm getting around my apartment without my cane pretty much all the time now, and I've started trying to walk around outside just carrying it. This is something I haven't been able to do since 2001. I still hurt, but much less than before.

My psychiatrist lowered my neurontin to try to help with the constant high side effect I mentioned in my last update. It helped a little bit, but not much. However, the nerve pain came back, but not as bad as it was before. Awesome.

Still having mood swings. As usual, I tend to manic. No change in my OCD, either. But I never expect either of those to change.

Right now my bipolar is Slightly Depressed.

Right now my pain level is 5.

Wednesday, January 13, 2010

A Long Delayed Updated

Shit, it's been just over two months since my last post. That's not good. I'll take this update in steps, I guess.

1) My Knee Surgery Recovery - I have physical therapy three times a week, and well, it's physical therapy so it sucks. I had an appointment with my orthopedic surgeon on December 11, and he said that I was healing exactly on track. I've been off the crutches for while now and back walking on a cane. My range of motion and stability are improving dramatically, and my weight-bearing has been catching up in recent days (one of my exercises has me standing on one leg for three minutes, and while still quite painful it's getting easier). It looks like I'll probably be getting off the cane in the next few months, and though I don't want to jinx it I have a feeling it might actually be weeks.

However, as I mentioned in previous posts, the only reason I got the surgery was to alleviate the constant pain I was in, walking-without-a-cane was not only not the priority, but racked me with guilt that I'm still feeling. And on a less positive note than what I mentioned above, my nerve pain does not seem to be going away. I am still in a shit-ton of pain all the time. So it looks like I'll likely be walking but in constant pain. Awesome.

My ortho had me talk to my psychiatrist to have her up my neurontin to treat the nerve pain from the CRPS. Since about a week ago, I've been taking two 600 mg tabs in the morning and one at night (I was taking a half a tab at night until Sunday). I was taking two 300 mg caps in the morning and one at night before, to treat my bipolar and OCD. I am not handling this new dosage well at all. I'm dizzy and light-headed all the time, similar to my vertigo spells but not really the same at all. I've basically been high the entire time. Crazymeds says this is normal at higher doses, though, so it's not just me. The question is whether I cut back to a lower dose and try something else for the nerve pain, or keep going and keep looking like a burnout.

He also prescribed lidocaine patches for my knee to help with the nerve pain, but my insurance company doesn't seem to think that the patches are appropriate for my injuries. So I guess I won't be getting those.

I see the ortho again on the 22nd, so I'll know more then. I did call him about the neurontin to get his opinion, but haven't gotten a call back yet.

2) My Mental State - I've been all over the place lately. I've been having all kinds of mood swings. Really severe ones. They've been manic phases, mostly, with a few really bad depressive phases thrown in there for variety. Last week, my bipolar hit me with an especially terrible depressive phase. Of course, it swung back hard into the manic phase that I'm currently in.

3) My Social Security Case - Ok, here's the big news. I talked to a lawyer yesterday. She told me the same thing that my last lawyer told me, though in a much less douchey way. My wife makes makes too much money for me to be eligible for SSI and I've been out of work for too long to be eligible for SSDI. So, while yes, I am probably disabled enough to win, there's nothing for me to win. I've been mathematically eliminated from Social Security Disability. Oh, Math. I thought we were friends.

The advice the lawyer gave me was that when I get the letter with my hearing date, to send it back, saying that I rescind my application and request for hearing. This isn't necessarily the bad news it seems. The way I see it, while yes, I while never get a monthly Social Security check or that hefty lump sum payment, I will also never have explain to a judge how awful my life is or have to justify having hobbies or going out with friends. (Seriously. One judge actually asked me to explain how, if I'm so bad, am I able to have friends and how am I able to do things like go out to eat or go to the movies with them.) This is a massive weight off my shoulders that I can't even begin to describe.

She told me that County Assistance can not take away my health insurance, even though they keep threatening to. But since I get insurance through them because I'm permanently disabled, they can't ever take it away. Ever. This is actually awesome, unlike the sarcastic awesome I usually end paragraphs with.

The lawyer also gave me some information about a program called OVR, which is a vocational training program only for disabled people. It's low-cost and they'll teach you to do pretty much any job you want to learn how to do (provided you pass the aptitude test for it). They even help with job placement. I'm not entirely sure if this will help in my case, because as I've said before, I have at least one, usually two, doctors appointments a week, and most employers won't let you call out crying. But I'm thinking I might go and check out a possible career in writing (as I have some experience outside this not-updated-enough blog).

So, yea, that's where thing's are right now. My leg's healing, but the nerves don't seem do be. My meds are fucking me all up. My bipolar has me all over the place. And my Social Security case is over and I'm alright with that.

Right now my bipolar is Manic.

Right now my pain level is 6.

Wednesday, November 11, 2009

A "Step" Backward

By yesterday evening, I had gotten my pain down to relatively manageable 7 or so. Then, last night while doing my exercises - straight leg lifts, the most unpleasant of them to be precise - my leg suffered some sort of catastrophic failure. At first, it simply stopped responding to my commands, in that when I attempted the third set of lifts my leg just would not go up no matter how hard I tried. Or in fact, do anything at all that I tried to get it to do. Eventually, I painfully managed to force my leg up and did the rest of the lifts. By the end, however, I was in so much pain that it felt like my leg had burst (like that runner's muscles in The Animatrix). Even after taking an extra percocet, the pain did not subside. Even today, over 12 hours later, and after taking a vicodin, the pain has not subsided.

I should not have pushed myself, and tried that last rep.

In other news, I got a letter from my lawyer. Well, I say "my lawyer." It appears that their office no longer believes my case is winnable, not because I have a bad case - no, in fact, they think my case is quite good - but because of the other logistic aspects. My wife makes too much money, and I've been out of work so long that I have no more credits built up. So it looks like I need to find a new lawyer. Again.


Right now my bipolar is Oddly Level, considering.

Right now my pain level is 8.5.

Tuesday, November 10, 2009

One Week Later

It's been a week since the surgery, can you believe it? Time really flies when you're in excruciating pain.

Last Tuesday, I had to be at the hospital at 6:45 AM. My awesome father-in-law, with my equally-awesome sister-in-law in tow, drove me and stayed the whole day (really, I can't say enough great things about him). I wasn't in the waiting room for all that long before they called me into the back to start getting ready. They, as expected, made me put on a gown, asked me a bunch of questions (the same ones repeatedly), and put in an IV. After saying goodbye to my wife and her dad and sister it was time to go in.

I was told the procedure took about an hour and a half. But it took me two hours after that to wake up from the anesthesia. During that time, the doctor came out and showed my wife pictures of the inside of my knee and explained to her what he did, but given the stress of the day, not exactly taking much away from it other than "it was gross" it perfectly understandable. When I finally woke up (and stopped worrying my wife, who was convinced that I wasn't going to), they gave me the aftercare papers and started to send me on my way. It was at this point that I had to remind the nurses that the doctor had told me that I would have to wear some kind of full-leg brace after the surgery. They said I didn't. I said I did. They called the doctor, who told them that, yes, I did have to wear an immobilizer. Apparently, since I said "brace" that was the problem. Idiots.

So, I've been spending the last week recuperating. I'm doing my very painful exercises religiously (two that have to be done hourly, one that has to be done three times a day), but mostly just sitting in my lazyboy, playing Xbox, and taking copious amounts of very strong pain killers. I'm using crutches to get around the apartment, and can't put any weight at all on my left leg. However, the pain is getting better, and the swelling has gone down a lot. The range of motion is starting to come back though, slowly.

There's more to tell, I think, but I believe I've about reached the amount of time I can spend away from the lazyboy for right now. Another update soon.

Right now my bipolar is Surprisingly Level (though it's been Kinda Depressed or worse for days).

Right now my pain level is 8.75 (now let's get some pain killers in me).

Monday, November 2, 2009

One More Day

So, my surgery is tomorrow. And I'm nervous as hell.

I really, honestly, don't care about getting off the cane. Seriously, that doesn't matter to me. It isn't the issue. If I had instability problems or was in a wheelchair but had no pain, I wouldn't even consider surgery for a second. I just don't want to hurt anymore. But what if the surgery doesn't take? What if I come out worse than when I went in? Then I'll be in even more pain than I'm in now. I'll have to take more and stronger pain killers. As it stands I already feel like an addict sometimes. And I'm sure I look like one to a lot of people.

In other news, I saw my lawyer last week. He told me that my wife makes too much money for me to get SSI and I've been out of work so long that that it might be hard to get SSDI. He said that I have a very good case, with all that was already in my file plus the recent addition of the seizures (or migraines or whatever) and the vertigo. Though it might not matter. I could win and still not get any money. If it looks like that will be what happens, then my lawyer won't handle my case and I don't have a lawyer anymore.

But they still faxed over the paperwork for the continuance for me. I got a call from Social Security this morning saying that I didn't get approved for it. I explained to the woman on the phone that I have surgery only days before, and that I'd be coming to the hearing in a wheelchair, in leg brace, on heavy pain killers. I explained that I was told this wasn't really my hearing, but that thing where they show you the video and explain the hearing process and tell you to get a lawyer. Since this is my third time going through this, I asked if I really even needed to go. Of course, she said yes. She did say she'd talk to the judge and try to postpone it. I told her that if she couldn't, I'd still come, though I didn't know how lucid I'd be.

On the other hand, the day I went to see the lawyer, someone actually offered me their seat on the bus. So there's that.

Right now my bipolar is Surprisingly Level.

Right now my pain level is 6.5.

Tuesday, October 20, 2009

Hurry Up And Wait

On Friday, I got a letter from Social Security. The date of my hearing is November 6. Three days after my knee surgery. Like I've said in another forum, I honestly can't tell which is the more fun prospect - Having to show up for the hearing in the wheelchair because I just got the surgery, trying to argue that despite the surgery I'm still disabled because my mental illnesses are the reason I'm here anyway, or trying to do all this on heavy painkillers.

Though it turns out this conundrum is more a philosophical debate, as my wife suggested that I push back the hearing because of the surgery, and my lawyer said there is no way I'm going to court that day. Both because of the surgery and so he can work on the case.

So, I've been waiting since (I want to say I got the letter saying I was on the docket in...February? Really, February? Ok) February for my hearing date, and now that I finally have one I'm going to ask to shuffled to the bottom the list again. At this rate I'm never getting Social Security.

Right now my bipolar is Slightly Depressive.
Right now my pain level is 6.