I'm tired

I've put off writing anything as I don't have a whole lot to say that I haven't already said, probably more than once. Pain, stiffness, can't walk, blah, blah, blah.

What I do have to report is not all that exciting. Tyler spoke to Theresa, the NP at Balderston's office this week; they are expecting FDA approval sometime in June, and rough guesstimate for my surgery, August or September. Of course, I am grateful and thankful that there is surgery to help me, and thankful that I can have it so soon (three more months! ack!) but being cooped up and unable to do lots of really simple things is starting to weigh on me.

I'm tired of not being able to walk. One of my "well-meaning" neighbors told me the other day that when I walked with my cane I resembled the R. Crumb "Keep on Truckin'" character (he was referring, I'm guessing, to the two panes at the bottom of that page in the link, as they are bent over forward), which, unfortunately, is pretty spot on. It's not just how I know I look when I walk with the cane, it's that walking even a few steps just wrings me out! I have to stop every few steps, panting with exhaustion. On the upside, I guess that my stomach muscles are going to be very strong, cause they're all that is holding me even semi-upright at this point.

I'm tired of not being able to stand up for more than a few seconds at a time without a)crumpling forward and
b)panting with exhaustion.
If I want to wash my face, I have to get into the shower, as I can't cup both my hands to fill them with water and rinse, I need to hold myself up with one hand on the sink.

I'm tired of not being able to spend as much time cooking as I'd like because I can't freakin' stand up. While it is true that the kitchen is one of the easier rooms for me (galley kitchen, always something to hold on to), doing anything like chopping, slicing, opening cans or, basically, anything that requires two hands, is very hard and leaves me, you guessed it, panting with exhaustion. (I wonder if my stooped-ness is cramping my lungs and affecting my lung capacity? A scary thought, since that was happening before I had the surgery for the scoliosis 20 years ago.)

Here's something else good: I'm still not tired of NYPD Blue! Hey, I've gotta find something positive to focus on ...

Dental Adventures

I went to the dentist on Tuesday. I honestly don't know which was worse, having my teeth scraped painfully and mercilessly by my dentist (during the time I spent in the hospital and flat on my back for weeks on end, flossing wasn't exactly a high priority, I'm lucky I was able to get up to brush once a day. Gross, I know.) or the cab rides there and back. I spent most of the time in the ride uptown hoisting myself up off the seat with one hand while bracing against the door handle with the other to prevent jostling and the pain that comes with it. Getting into the cab was no bargain either; when I finally got myself in and was sitting upright, I couldn't move to close the door. I had to yell at a lady on the corner and ask her to slam it for me. She had been trying to hail her own cab and actually tried to take the one I was in till the cab driver saw that I had a cane and jolted past her to me. ha!

I expected the dentist's chair to be more of a torture device than usual, but was pleasantly surprised at how comfortable I was. The only dicey part (apart from having my teeth scraped painfully and mercilessly, I know I already said that but it bears repeating, painful merciless scraping I tell you!) was when I had to sit up to rinse and spit. Dr. Goldstein helped me out by elevating the chair and slowly tipping me up to a semi-sitting postion, then handing me the cup of water. When I was done swishing, I had to aim and really spurt all the blood and mouthwash and water out, as I was still about six to eight inches from the basin. I didn't get ANY on me; by the end of the cleaning, I was really looking forward to the spitting.

I feel so much better now that my teeth are clean and white. The next thing on my list is a haircut, but I'm going to have to wait for the tonsorial adventure till I recover from this week's cab rides. And here's something I never thought I'd say, despite the (here it comes, get ready) merciless scraping, I'm quite sure that the experience at the hair salon, what with the shampooing and sitting upright for close to an hour, will be much worse than the dentist's.

It's the darnedest thing ...

Most of the intense pain that I was having over the last few weeks has subsided, at least for now, but I'm having much more trouble walking and moving. How weird is that? I'm not sure how or why this should be so; it could be the Neurontin that I am taking for sleep has kicked in as its off label use against chronic pain. It could also be that the pain has just decided to go away for a while, except to make cameo appearances when I move or try to stand or cough or breathe. Either way, I'm happy to have a break from the more intense pain, happy to give my poor beleaguered liver a respite from the constant onslaught of chemicals in the form of Tramodol and Tylenol.

Here's something else, it is getting harder and harder for me to hold myself even semi-upright without something to lean on. It takes all my energy to do so when walking, and then I have to stop every few steps to breathe, and usually have to keep my hands gripping my thighs to keep from crumpling in half.

As you know, I recently got a cane. Once I got over the shame of using it, I found it helps me to get around a bit better; I can actually walk over to the gym and use the recumbent stationary bike that Dr. Balderston recommended, though I must be a sight to behold: it takes me a full twenty minutes to walk from our apartment door just shy of 10th Avenue on 24th Street to the NYSC at 8th Avenue and 24th. I take a few steps, then stop and lean on the cane with both hands, panting. I can't even think about how long it is going to take me to get there and the possibility of painful spasms if I step wrong on the way, or I'd never go; I numbly put on socks, gym pants, sneakers, t-shirt, and go.

Then there's the maneuvering I have to do to actually get on to the bike once I'm there. This action, along with any other movement, like going from a standing to a sitting position or vice versa, makes me look, I'm sure, like one of the heroin addicts you see in the park or on the subway, all their concentration devoted to making one small movement, like lifting a hand to scratch a nose, performed in the most careful and deliberate slow motion.

I've been forced to decelerate everything. If I am twenty feet from the corner and see the light is about to change, I can't run to catch it; I must be satisfied to get to the corner, and, resting on my cane, watch the cars and trucks go whizzing by as I wait for the light so I can shuffle across the street, hopefully making it to the other side before it changes again. I stopped to rest yesterday by the park on 24th, just behind the Clearview cinema and was able to see a robin yank a worm, still wriggling, from the ground. A few paces down I watched as two squirrels chased each other, oblivious to me, around and around a tree trunk and then off into the bushes.

I've never been an especially patient person, in fact I'm pretty much very IMpatient most of the time. Now it takes me twenty minutes to walk a distance that used to take six, but somehow I'm ok with that. I'm more tolerant. It's the darnedest thing.

Pimp my cane!

Pimp my cane!
Originally uploaded by _Ingrid_.

I finally broke down and sent Tyler out this weekend to get me a cane. He came back with this sleek black "quad" style (so called because of the four feet at the bottom). It doesn't help so much with walking as it gives me something to lean on when I have to stop every few steps to rest.

Here's the part where you come in ... Get busy all you creative and crafty cats and kittens! Any kind of stickers or labels (like file folder or address labels) stick to it (no post-its please, they fall right off!), it is about 2" in diameter so things could be tied around it, and the little ledge at the bottom could fit a tiny mascot or two. So tiny printed photos, notes, graffiti-like tags, anything like that would work on it. Think of it as kind of like signing someone's cast in the digital age and it's not a cast it's a cane.

If you are interested in pimping my cane, please email or flickr mail me for my mailing address, or you can email a file to me to be printed on an address label.

Yo! Pimp my cane!

My appointment with the people at SSDI is on May 15th. I thought I might trawl around some of the sites where folks with back pain gather to see if I could get any tips about the SSDI process. I ended up getting really annoyed at some of the postings here from people who are suffering from various ailments that are causing back pain. While a few of them make me thankful that I'm not as bad off as they are (people with morphine pumps and implants to block nerve impulses who can't have any more surgeries because of built up scar tissue, people with previously misdiagnosed conditions or botched procedures), I honestly want to *shake* some of these other posters! One woman was ranting on (in all caps, no less) about how she couldn't walk for more than 30 minutes at a time without pain. A man was lamenting that his recurring pain would take "a few days" to subside. Another man was complaining of pain that had forced him to curtail his daily walk to 2 miles.

WTF?!

I can't walk to the bathroom or kitchen anymore without wrenching pain and leg weakness, and my feet feel like they're falling asleep all the time. I have to lean on Tyler or pieces of furniture as I go. Sometimes I don't leave the house, not even to stoop sit with Tony, for days at a time. Walk for 30 minutes? I'd sell my soul at this point to walk for 30 minutes without pain or to have this whole mess subside in a few days.

Perhaps we back pain sufferers should stick together; perhaps we should have our own version of the Blue Wall of Silence, where any back pain is *all* back pain and no one who has it doubts anyone else who says they have it. If one of us has it, we all have it; that sort of thing.

I think maybe I've been watching too much NYPD Blue ...

I'm too thin!

I guess it is not possible to be "too rich" but I am definitely too thin right now.

As I said here, Dr. Balderston wanted me to gain some weight, but without any kind of exercise in the picture it's hard. I don't want to gain fat, and that's what will happen if I just start loading up on cake, chips, ice cream, etc.

Anyone have any tips on putting on muscle without really working out? I do have some tiny hand weights for my arms and upper body, and have been doing isometrics for my legs and butt (pillow between the knees, squeeze it while squeezing butt at the same time, hold for about two minutes, do about 10 to 15 of these a day) but other than that, I am forced to be pretty sedentary. Add the pain and inability to sit for longer than 3 seconds to the system numbing effects of the pain medication and my appetite is nil. I'm having one protein shake a day, and I will probably up that to two a day if I can't find another way to get some good calories in me. I dread having to face surgery, even if it is months away, being so underweight.

OK, on today's rerun of NYPD Blue, there was a character who stabbed himself and said it was a robbery so he could get disability cause he had Degenerative Disc Disease in his spine and his insurance didn't cover it! This marks the first time I've heard what I have referenced on TV. You would think, since it is so common (SSDI says it is the one impairment they see listed on the disability forms more than any other)that you'd hear more about it, maybe more famous people that have it, etc. That is part of the reason I started this blog, cause I feel alone in having it, and when I tell people what it is, no one seems to have heard it.

SSDI

Getting ready to apply for disability (SSDI) and not very optimistic about the outcome. I've found a blogger who used to work for SSDI and doesn't paint a sympathetic picture for sufferers of Degenerative Disc Disease who apply. This pisses me off, though it is typical of the government and the medical community in general to be dismissive of the nebulous world of "back pain." The problem is, it is fairly easy, I'm guessing, to fake. So now thanks to all the fakers out there, I can't (well, I'm getting ahead of myself and predicting here, I haven't even applied yet; but from what I've read and people tell me, it is next to impossible to get SSDI for back pain) get any benefits that are due to me even though I am genuinely unable to function in any meaningful way anymore.