Pro-neurodiversity, pro-vaccines, pro-disability rights, anti-cure.

Now Katy doesn't want to live in Smithton anymore.

Monday, January 31, 2011

My spine is a traitor.

I was a little enraged when Sean said, “Why don’t you take another Vicodin?”
I told him no.  He’s been making helpful suggestions constantly over the last few days and even though I knew he was trying to help me, each suggestion pushed me further towards breaking point.  The Vicodin I’d taken an hour before was still coursing through my system and I could feel it, but through the sleepy warmth my back was still screaming in pain.  I knew I was running out of pills.  The label said to take one three times a day, which meant every eight hours, but I had to take them every four and I was still in a lot of pain. 
The label also said no refills.
“Kat, you’re sad.  I don’t like it when you’re sad.”
“It doesn’t matter,” I said. “It doesn’t make the pain better anyway.”
“You need to take your medicine.”
“I only have 15 pills left.  I’m taking five a day.  You do the math.  I won’t last three more days at this rate.”  I buried my face in a pillow.
“The results from your MRI will be in soon.  We’ll find out what’s wrong with you and everything will be okay.  Your doctor’s going to call in for refills.”
“And he’ll give me 60 again.  That’ll last 12 days.  And it’s still not going to help.”
The conversation degenerated from there and once again I was left crying in my bed, praying for relief, while Sean was angrily killing elves on World of Warcraft.  I was in love with him, and right now I was dependent on him for all of my care.  But the pain made me prone to meltdowns and prone to arguments, and the pressure of taking care of me was too much for him sometimes. 
I’d had the back pain for years, longer than I can remember.  I can remember being 12, on vacation in Canada with my family.  At Niagara Falls I couldn’t walk any longer, and I sat down next to a rock and cried.  I had the impression then that no one believed me.  My brother had brittle bones and he was constantly breaking them, and maybe they thought that I was jealous and taking a cue from him—the only reason I was even in Canada at the time was that Canada was the only country that had drug trails giving bisphosphomates to children with his disorder, and I’d gone up with him for the first time and spent a week watching him get IV’s stuck in his arms at the Shriner’s Hospital in Montreal.  By that time my back pain had been going on a while. 
I spent years feeling invalidated about my pain.  No one took it seriously until I was in high school.  I was sick with some sort of respiratory infection and they wanted to x-ray my lungs.  I stood with my back straight against a white plastic board and sat down when they went to review the pictures.  The tech came back to the room later, irritated, and said I should have told him I had scoliosis.  It made him think the x-rays were bad at first.
That was the first time I had ever heard that I had scoliosis, and it was news to my mother too.  She cried in the car on the way home.  I’d been obediently taking four ibuprofen every time my back hurt for years by then, and I wasn’t that surprised by the results of the x-ray.  Nothing was really done about it because it seemed like my self-medication was working well enough.  I’d have occasional episodes where it was extremely painful and I’d usually just suffer through it.  If I was lucky we’d have some old Tylenol with codeine lying around and that would give me more relief.
The pain was worse after a lot of physical activity, or during my monthly period, or if I had to carry a large load of books at school.  I was in two car accidents in high school and another in college, and each briefly intensified the symptoms.  I took karate in junior high and high school, eventually rising to brownbelt, but I was constantly injured and taking long breaks from training.  I eventually dropped out of it.  My weight was an issue since about 5th grade, but I gained more.  My doctors sometimes told me all my problems would go away if I lost weight.  I couldn’t lose weight without injuring myself, and the diets they recommended left me with few options for food that didn’t give me sensory issues.  I coped with the back pain, sometimes more effectively than others.  When it was bad I could count the vertebrae that hurt—always the same three, the bones aching and feeling as though they were crushed together.
I was used to dealing with it when I got to college, especially after I was put on Vicodin for the first time.  I was originally prescribed low-dose Vicodin for a bad ear infection, and I was surprised that it made the back pain disappear.  I was on a higher dose when I broke my foot (I had a serious avulsion fracture of my fifth metatarsal that required surgery and caused me to use a wheelchair for three months), and I was prescribed it again when I had my wisdom teeth removed.  I had enough left over after those issue were over that when my back pain was really horrible and ibuprofen failed I would take a real painkiller. 
I started dating Sean in October of 2009.  Not long after that I noticed a new and disturbing symptom.  I had strange pain in my muscles of my lower back.  They were tense and uncomfortable.  And there was a different pain, one in the vicinity of my backside but several inches in, as if the pain started in the center of my leg.  It felt like a pinched nerve and it made it hard to walk.
Sean knew what this pain was.  He told me it sounded like I had sciatica.  He’d had sciatica for a few years.  He got it during the winter and it caused him to walk funny for a couple months, and the muscles in his back would tense up.  By March it would be so bad his back just gave out, and then he’d go to the doctor for painkillers and a shot of Demerol. 
My sciatica wasn’t just a winter event.  It happened the more I walked.  The sciatic nerve was the one that was inflamed, and that’s where the pain was worst.  But I had pinched nerve sensations all the way down both legs, usually worse in my right leg.  The misfiring nerves caused my muscles to randomly spasm.  I saw the doctor.  I walked out with Flexeril and Tramadol, which kept the pain under control pretty well.  Sometimes I’d need it a couple times a day; sometimes I wouldn’t need it for two weeks.  When I ran out and needed more I’d go back to the doctor. 
I felt guilty for taking painkillers so often.  Ableist society had taught me that I didn’t want to be one of THOSE disabled people, the people who only pretended to be disabled or exaggerated their problems for pain pills.  Disabled people who took too much pain medication were fakers, liars, and bad people, the same people who filed for disability payments because they were too lazy to work.  I think I was less worried about being judged and more worried about the pain medicine magically affecting the state of my soul and making me into one of those horrible people.  It’s strange because when I talked about other people I would say that those people didn’t really exist.  I know disability fraud is rare and I know how damaging those stereotypes are to disabled people.  I’m passionately against perpetuating that stereotype.  So now I’m ashamed that I’m ashamed of the pain medicine. 
I worry sometimes that I’ll get addicted, even though I am taking the medicine for a legitimate reason and I’m not abusing it.  When the pills I take wear off a few hours later and I need a new one, sometimes I think it’s not because the medicine wearing off means I feel the pain again, but because I’m going through withdrawal and it’s causing pain.  I tape Intervention so when I feel like this I can remind myself what addiction looks like and try to be less critical of myself.  It’s negatively affecting my health.  When I realized I was allergic to the Tramadol after taking it nearly a year, it took me weeks to get around to asking my doctor if he could prescribe me something different.  That I didn’t crave it at all or go through withdrawal during that time is proof that I’m not addicted. 
There are three pains in my back, although I can feel one, two, all three, or none of them depending on the week.  There’s the bone pain in my upper back, the muscle pain in my lower back, and the nerve pain in my lower back and legs.  I know the difference between all of those, and I’ve had it long enough to know the difference between bone pain and muscle pain.  The ER doctors who see me every several months when I’m in intense pain will try to argue with me and say I’m probably exaggerating and the pain in my bones is just muscle pain.  I’ve never been able to be very forceful arguing with doctors.  My regular doctor is busy and I haven’t been able to sit down with him and explain it all step-by-step like I just did.  I normally complain about the sciatica when I see him. 
Several months ago I went to my doctor and he decided I needed physical therapy, x-rays, and an MRI for my sciatica.  I went to physical therapy but it didn’t help much, and the therapist said I needed x-rays and an MRI so they knew what was causing my pain so they could treat it better.  I went to the hospital for x-rays.  I was having one of those days when my autism seems worse than normal, and I was nervous, jumpy, and communication was a chore.  The girls in the radiology department took me to get changed into a hospital gown.  I changed, got the x-rays done, and then they took me to get me changed back into my own clothes.  The two girls stood by the door and told me that they would be there when I stepped back out and they’d take me back to the waiting room.  When I stepped back into the hallway, though, they were gone.  I walked through the department, lost and apparently alone, until I found the waiting room, which was empty.  It was like everyone had gone to lunch and forgotten about me.  I couldn’t get the MRI set up until the results from the x-ray were in. 
I turned 22 not long after.  My insurance lapsed until Obama’s new laws went into effect in January.  During the lapse I got a letter from my doctor saying that I would be dropped from the practice for noncompliance if I didn’t get my x-rays done.  Apparently the radiology lab never sent them to him.  I was irritated, but I was too frustrated to call the doctor about it.  It wasn’t like I could afford to go back to the doctor anyway.  When my insurance came back I was sick and nearly had to be hospitalized.  I saw my doctor again and he said that he wouldn’t drop me from the practice, but I was too preoccupied with the illness to think about the x-rays and MRI.  I got better and it was still in the back of my mind.
But last week the pain in my upper back took on epic proportions.  I came home from school every day and collapsed, sobbing, into bed.  I had most of a bottle of Vicodin.  I had a few old Flexerils.  I had a heating pad.  None of that prepared me for what was coming.  Every day made the pain worse.  I went from three to five Vicodin per day.  I had trouble walking more than a few feet and carrying my backpack to school was an incredible feat.  I couldn’t drive to the Metrolink, or walk from the Metrolink to the main school building.  Sean had to drop me off at school every day.  On Wednesday the effort of standing in line and getting lunch was too much for me and I nearly fainted.  Thursday morning I was in such incredible pain I couldn’t go to school.  I spent most of the next three days in bed, getting up only to go to the bathroom.  I couldn’t pay close attention to anything, and I watched TV and surfed the Internet.  I tried to write an e-mail but it was hard to concentrate on actual tasks. 
My mother told me to go back to my doctor.  I told her I felt like no one cared about how much pain I was in.  Mom called the doctor and asked again about the x-rays.  My doctor’s office finally got the hospital to send the x-rays, but there was nothing abnormal about them.  They set up an appointment for me to have an MRI.  Everyone seemed nervous about how I would handle it but I was just relieved to see them taking my pain seriously again.
I went for my appointment on Friday.  I told the MRI tech that I was autistic and I’d need ear plugs to make sure the noise didn’t bother me.  Sean came with me but he had to wait in the radiology lab waiting room.  I had to go in alone, and for the first time I started to be frightened by the impending scan.  When I walked into the room where the machine was, I immediately became terrified.  I was staring at a plastic tube with something that spun around it and it was making loud whooshing sounds that hurt my ears.  The tech had to wait a couple minutes before I could go into the room.  The changing stalls were in the cooler room and even there it was unbearably noisy, and there I had to walk over vents in the floor in bare feet and a hospital gown with cold air blowing up under me.  I laid down on a stretcher and put ear plugs in and headphones over those.  I couldn’t hear the whooshing or the tech talking.  The stretcher rose and slid into the plastic tube.  I was only an inch away from the top of the plastic, and I couldn’t move.  I panicked but held still.  And when the machine started running the noise was terrible even through the ear plugs.  It took 17 minutes.  When it was over I was shaking hard and had to sit down.  It took me hours to recover.  I had a miserable weekend at home in bed, arguing with my fiancé over whether I could take pills.  I couldn’t cook or clean or fetch things from the other room.  Sean had to take care of me.
That was last weekend.  I went to school today and hoped the refills I’d ordered would be granted by my doctor.  My mother texted me to let me know that the results of my MRI were in—I had bulging discs from T10 to T12 and degeneration between L4 and L5.  I cried.  After all these years I finally validated what I’ve been telling people—the two locations of pain, the three vertebrae in my upper back that I could count, the fact that the pain was serious.  And now I know what’s wrong but I don’t know what they’re going to do with me.  Cortisone shots maybe, which might mean less pain pills.  I just want relief.  I want to be able to concentrate on things again.
I’ve been away from my blog for months.  I’ve been away from planning my ASAN chapter.  I’ve neglected a lot of projects while I was healing and I haven’t healed yet.  I’m scared.  This means I’m going to be physically disabled for the rest of my life and all I can do is try to manage the pain.  I thought I was prepared for this news but it just feels devastating right now.  Right now I can feel the injured vertebrae in my upper back screaming and there’s nothing I can do about it.   It’s going to be a while before I can get used to the idea that this will be here forever.  I’m not ready to accept it yet. 
But I know I’ll accept it eventually, like I did with the autism when I found out I had it, and like I did with my hearing.  It’ll just take a while.  The autism and otosclerosis don’t hurt.  I don’t have to think about them at every second of every day.  And right now I can barely think about my fingers on the keyboard or what I’m typing.  That’s in the back of my mind.  The foreground is all thoughts of the pain.


  1. Hi Kat,

    It sounds like your scoliosis is a lot worse than mine. I had had some problems with my back when my Dad made me break up an old cement patio with a sledge hammer and carry it away with a wheelbarrow, and then replace it with cement patio blocks. Again when he had me use a shovel to do the weeding around the shrubbery. It didn't occur to me to tell him that those things made my back hurt, I thought everyone had those problems.

    It showed up in the X-rays when I took my physical to join the service, but they didn't give me 4-F status, (not to be drafted, because of physical disability), and they didn't even tell me about it. I didn't know about it until a couple of years later, when I was given a big typing project, and had to sit and do nothing but type for a week or so. I went to sick bay, they took more X-rays, and this time showed me the results.

    It seems that one vertabra, (the 9th thoracic), didn't grow normally on one side, and so was trapezoidal in shape, and threw the spine out of alignment. It doesn't cause constant pain, but usually just spasms of pain when I get into or out of a car, or sit or stand for prolonged periods, and can't change positions. The spasm of pain usually only lasts a second, and is relieved by changing position.

    As I grow older, (and I'm 64 now), it got worse, of course. I can't do my dishes for more than 5 minutes without taking a long sit down break. I once had a major long lasting pain requiring major medication when I was using a disc sander to remove old paint from the shingles of a house. That really gave me muscle strain. It hurts now when I drive very far, 20 miles or so, and when I sit at the computer, (although I really should adopt a better sitting posture).

    I have a big bottle (240 tabs) of mild Vicodin, (5 mg codeine and 500 mg acetaminaphen), that the VA gave me when my gall bladder started acting up. I really don't notice any pain relief, although they do help me get to sleep if I take them for that. I still have dozens of tabs of a much stronger hydrocodone from a septoplasty operation I had back in '05. They're 30 mg codeine and 300 mg acetaminaphen. Again, I don't notice any muscle pain relief, although they can really knock me out.

    I've tried Indomethacin and Diclofenac, but they don't seem to help at all. I used to take strong Ibuprofen (800), but my Doc took me off that because it can cause liver or kidney problems. It didn't seem to help my back pain either, although good for a headache.

    The only "solution" I can offer is that I think you should tell your Doctor to get real, this thing isn't going to go away, and you shouldn't be limited to only 60 tabs at a time. That's an inconvenience you shouldn't have to worry about, always renewing and refilling prescriptions.

    I hope you find some pain relief.

  2. Kat,

    I'm so sorry that you're going through such hell. I had a degenerative disk in my neck and it was just awful. Fortunately, they were able to do surgery, remove the disk, and put in a bone graft and a titanium plate. I haven't had any problems since then, and it was about 3 1/2 years ago.

    Is there any surgery they can do to help alleviate your pain? I hope there is something. Meanwhile, do what you can to advocate for yourself regarding pain relief. And please email me if you need support. I'm here.