Monday, March 31, 2008

Surgery or no?

I'm fine, just stressed out about whether to have surgery or not. I thought this was settled. The neurologist cleared me for surgery, and I would have called to schedule it this afternoon except...she stressed me out about having surgery and urged second opinions, as my primary care physician did, even though he said he was really concerned about the neck issues last fall, when I was still saying, "so what?"

I spent most of the afternoon feeling waffly and neurotic and finally emailed family and close friends the news. One friend brought me back closer to center by responding with anger to the neurologist: "Who referred you to this surgeon? You didn't just pick him out of a hat, did you? For someone who has seen so many doctors and who has such clear and imperative symptoms, I don't quite understand shopping around for other opinions. I do think yes, ask this doctor why the fusion rather than the other [the Prestige disc] and how about with osteoporosis; those are significant questions." A nurse who knows me well (from another practice) also emailed back and said that the people in her practice think of Dr. Wunderkind very highly, which alleviated the concern that maybe something has gone terribly wrong with recent surgeries. My mother gave a nice contradictory opinion, that I should still go with my gut instinct (surgery by Wunderkind), immediately followed by a sentence about getting a second opinion since other doctors suggested that.

The neurologist said she couldn't see having surgery done, but she didn't put up the right MRI film, the one that shows the spinal cord compression on the left side, not where it looks not so bad in the middle. And she couldn't determine whether one cross section was cervical or lumbar. I had to go grab the other films and said, "How 'bout look at the times stamped on the film" (all the lumbar was done first). She didn't look at all the brain films either. Then she read the radiology report and noted that the radiologist noticed spinal compression and stenosis, but didn't revise her opinion. It's a little scary to think this may be what goes on behind closed doors in medicine. She said it was nice to have a patient who has a medical background. I think it would be nice to have doctors with medical background. Or who can at least read an MRI film. We'll revisit some of the other issues in a few months and maybe do extensive testing for the word and memory issues, which would mean visiting specialist number I-don't-know-what. But as far as the spine issues, let's see how she'd do with this pain level for months on end. She asked what I hoped surgery would do. Umm, help with the pain. Restore function. I wasn't showing Hoffman's sign this morning and didn't have much weakness this morning. Tonight's a different story, trouble with hand again.

Maybe there was just a disconnect since she suggested PT. Umm, I've done that. Maybe she thinks this is recent and I'm jumping to surgery rather than realizing I drag my feet about doing anything interventionist.

The neurologist thinks most of the neurology problems may be due to the extensive job stress and other major life stresses I won't write about here (the spine doctor didn't ask about specifics, though I said stress probably caused it). I told her I was thinking about quitting my job. She said don't quit, that she was in the third year of medical school when she was my age and I'm young and working is good for me. But if I fold up and die inside because of part-time work, it's really not worth it. And the anti-disability environment is terrible.

My friend who had successful spine surgery a few years ago called this afternoon and I jumped her for information and support, both of which she gave. I remembered the herniations above and below C5-C6 are new; she said this is a normal progression and happened to her and others. Waiting for surgery may turn it into a 3-level fusion. Not nearly so much fun. We discussed the anti-disability environment and specific problems she has had that are very similar. Strength in numbers, or at least misery loves company.

I still feel weird I haven't seen the radiology reports for the brain. I've noticed almost all imaging reports carry some odd anomaly that is minor but that would worry a lot of people. I've learned to stop worrying about that so much after several scares where the radiologist was convinced I had ovarian cancer or whatever. If you have imaging done, random anomalies will be found and investigated.

What if I'm allergic to titanium?

Saturday, March 29, 2008

Neurontin and neurology

So the spine doctor who doesn't prescribe pain medicine, leaving it to the primary care physician, was empathetic to the delays and pain level and prescribed Neurontin. (I don't blame him for not prescribing pain medicine; people don't need to be getting it from multiple sources since there is a possibility of addiction or of mixing drugs in dangerous ways--such as muscle relaxants with pain killers. One or the other, not both.) But I hope those who need medicine are getting it from somewhere since primary care physicians are often dismissive of back pain.

The nerve pain is so much better that I can lift my left arm with hardly any pain today, and the neck pain is much better. This works so much better than the hydrocodone or ibuprofen, or anything!

So Neurontin makes me barf. I woke up twice in the middle of the night gagging. I can deal with that. Sometimes you'll do anything to relieve the pain. I don't know that I can use it all the time, but blessed relief! There's still significant pain, but less hammer-my-head-against-the-wall pain.

The word errors I make constantly are troubling to me since this isn't something I have had trouble with until the past year and a half. And it's much worse. I ask my husband for my feet instead of my slippers, I twice in a day say "August" instead of "April" (and April was the word I was trying to say). I wrote the word "topic" instead of "notebook," "how" instead of "hope." There are certain repetitions in my language I have to go back and cut. I use "too" and "though" in almost every sentence and have to edit them out. I overuse "things" because it substitutes for words I cannot come up with. It takes me five seconds to come up with the word for "sunflower seeds" after picturing them. I ask for "seeds." I can't think of people's names who I've known for a long time or recognize them if I haven't seen them in quite a while. I use the wrong pronouns--"them" instead of "it" in the last sentence of the first paragraph in the safety post. Despite these errors, I can still communicate well enough and am smart enough to do my work. A few errors can be humorous, can be overlooked. They're not constant in speech, though they happen often enough, a few times an hour, to be worrisome. I notice it more when writing; it happens more with writing, but I write very quickly and that can be edited. I type homophones for words I didn't even realize had homophones. My progesterone prescription helps. I can tell a difference when I don't take it.

There's a lot I catch. There's a lot that I may not. I appreciate people's patience here if I'm muddy in my thinking or in my phrasing. Things weren't always so. I haven't lost IQ points. I still know what I know. That's solid. And I keep learning, since "knowledge" can change.

I remember noticing another woman's typos last summer and worrying about her abilities and how this might harm her career. At the same time, I've recognized her leadership abilities and how she can get so much done. She recognizes needs and finds creative solutions. She is a problem solver. I noticed that the errors disappeared after a while. She mentioned she had started a medicine for a Parkinson's like illness that causes involuntary unwanted movements. I think her typos and word problems were from this neurological illness, either difficulty typing or with resulting verbal function. I'm glad I didn't judge, didn't make comments to anyone else. I'm glad I helped her edit a few technical documents on which she had put in a lot of work, for use by everyone, and that needed only minor changes. I hope others will give me the same patience.

I hope my troubles are temporary, from pain and stress, and think they may be. Extreme pain seems to short circuit my brain.

Traffic (Un)Safety, Or Disablism Can Kill

Yesterday I was on a field trip with my second grader as a chaperone. Yesterday I learned that scooters and vehicles don't mix, that my life can be at stake because of other's disablism. This is why we with disabilities need the closest available parking and shortest route to a building, even when we use wheels. This is why people need to keep routes accessible and not block them. There should be a zero tolerance policy for blocking entrances to buildings and to sidewalks because it is dangerous. Wheels don't make getting around easier--they make it possible. And wheels don't make life simple, they make it terrifying.

It was dumb to go on the field trip given my pain level, but I haven't been able to do so in a very long time. I could not stand or walk any distance and would have to lie down on benches during outings. I could not go on similar trips last fall at all. With the scooter, I can go, even if my very high pain level makes me greatly regret it later. I wanted to be with my kid and figured I would make up for it this weekend, crashing on the couch with ice packs.

So when I got to the museum, having to follow in my own car because of my lift, the buses parked right against the only ramped sidewalk into the museum. The ramp was exactly two bus lengths wide. Everyone got off the buses, and I thought, oh no, this is one of those field trips where the bus drivers wander around and enjoy the museums until pick-up time, too, and even if I call the museum, no one will find them. Everyone was off the bus and I was in the middle of the street trying not to get run over by oncoming traffic while trying to get a bus driver's--or anyone's--attention. Finally one of them noticed and looked surprised that I was sitting there, in the middle of the street. I had to explain.

When we left the second museum for lunch, another row of buses had parked on the sidewalk, leaving a small gap for pedestrians but not for people with wheelchairs, scooters, baby strollers, walkers. One mother asked, only when I requested, for the bus driver to move up. I could barely get the mother's attention to get her to stop and make the request. I started to go on the grass, but realized I wouldn't be able to get back up it because of the height difference between grass and sidewalk just ahead. She probably wondered why I didn't. She didn't wait for me with her own group to make sure he did and that I was okay. The bus driver eventually pulled forward, and immediately the bus driver behind started to pull forward instead of letting us cross, though we had clearly been trapped for a few minutes, though he had witnessed the whole interaction. Despite my shoulder/arm pain and the extraordinary difficulty doing so, I threw up my left hand in a very clear "stop" signal, shook my head in a clear, pantomimed way, gave an appalled look, and said, "sheesh!" One of the kids I was with walked in front of the bus, and I couldn't stop him because I couldn't reach. Fortunately he came back. Maybe people with disabilities shouldn't go on field trips if people's stupidity is going to put kids' life in danger, as well as my own.

I almost got backed over by an SUV and a truck. I didn't see my life flash before my eyes. I saw tailgates get closer and closer. The drivers saw me pass and probably assumed I was out of the way. I couldn't get out of the way. The sidewalk in front of me was inaccessible, so that I could not go forward. I also could not go backward because the truck was also backing up. Both were parked illegally, on grass, near a museum. Fortunately someone instructed the truck driver, and on a whim the driver of the SUV decided it was easier to pull forward and do a U-turn.

What makes this situation more irritating is that I had been abandoned by the group I was with. A presentation went over and we were late to get back to the buses. So no one waited for me when I got off the elevator. It might have taken 30 seconds. This is the only time I didn't have the kids with me. I'd say that maybe if I had them with me others might have stayed with me, but they did so less and less as the day went on. And then the kids' lives would have been at risk again.

The teacher also chose a different path to go back to the buses rather than the known accessible path. Another mother who was just ahead did not bother to stay with me and did not notice that there was no way I could get over the sidewalk bumps at one location. She did not stop when I called out to her. I had to determine if I could go over a very steep and curving wet drive without dumping myself over. My scooter seems very unstable in the rain or on wet pavement and I've nearly tipped it several times. If one parent had stayed with me, the drivers would have seen her and not continued to back up since she was higher than bumper height. And if the bus forgot her? Well, I already had to drive my own car, and she could have returned with me. The irony? The buses weren't even there yet! They drivers must have got the message from early in the day, because at pick up time later, they parked on either side of the sidewalk ramp, and another woman in a scooter and I were both able to leave. Another teacher, who had not been with our group, also made sure traffic was clear for me on either side of the buses before I crossed the road to the parking area. She got it, and she would not have been one to have left me behind earlier. She has chronic illnesses herself.

This shortcut might have saved a minute or minute and a half at most. The buses would not have left without one of the classes.

The amazing part? Everyone probably thinks they helped a gimp that day because they closed one door and opened another so I could get into one of the buildings. Or told a kid to stop running past me. Or asked what was wrong with me, in front of my kid, who has been emotional about it. Or joked with the kids that they might need the scooter later in the day. But the most dangerous instances, when my life was at stake? They didn't notice.

The kids I supervised? They were great. A little too rambunctious at times, but no problems I haven't had on foot. I had to tell them I was angry at one point because they were not listening. Saying "I am angry" had a stronger impact than saying, "you guys need to stay with me and can't wander off." That's to be expected. That's why we have chaperones.

The only problems I experienced were from adults' disablism. And disablism can kill.

Friday, March 28, 2008

Help Find the Cure for Disablism!

Disablism is a common disorder which can begin in early childhood, though its symptoms are often much more marked in adulthood. Without preventative measures, disablism can grow into a chronic condition that becomes more difficult to cure with time. Early detection and proper treatment are key to helping those with disablism lead stronger, more productive lives.


Is disablism contagious?
The jury is still out on this question. While some epidemiologists believe disablism may have a contagious aspect and may spread virulently, other researchers emphasize individual health habits and responsibilities.

What is the treatment?
Treatment varies by the degree to which the patient is affected. Treatment focuses on creating new, nondisablist behaviors. For patients unrectifiably deficient in empathy, legal remedies may be required. Please ask your doctor for more details.

What can I do?
Most importantly, educate yourself about disablism. Ask your health care provider, "am I disablist?" Equally important, watch for early signs of disablism in your loved ones and seek early treatment. Disablism is much more cureable in its early stages than when its victims become homicidal or harm others. In addition, help raise awareness about disablism. Discuss disablism and its harmful effects with others.

For more information and resources on disablism, call the Cure Disablism Network at 1-555-BE HUMAN.

A note on anonymity

Since I assume that I am not completely anonymous and that many people can figure out who I am, there's a lot I don't blog about. I change some details about some individuals and situations; I am more readily identifiable than others. My family and friends know I blog, so I have no concerns there. However, I give medical details I keep private in everyday situations.


I discovered that when I'm feeling most restless or unable to settle and keep circling around doing too much it's both when my pain level is extraordinarily high and I have a very fast heart rate at the same time (over 100 resting). I'm wondering if the two (pain and heart rate) aren't related. When I take pain medicine, some of the restlessness goes away, but not enough. Right now my pain level *with* medication is higher than it usually is without! It looks like it's going to be an unsettled day.

I realized I now actually have 15 medical specialists, but 3 of them I haven't seen in a while. That doesn't count eye doctor, dentist, orthodontist, and maybe I shouldn't count internist. And some of the doctors wonder why I won't do regular appointments but only come in for problems! Time management....

Acupuncture, acupuncture...

Thursday, March 27, 2008

Suggestions for Bumper Stickers or T-Shirts

Because I am sick of the laughter, mostly from young men who don't "get it" or see disability if there's not a wheelchair, I'm considering an obnoxious bumper sticker for the back of the scooter; obnoxious but still "work safe." Nothing can work on the front, unfortunately. Suggestions, or have you seen anything fun? There are a number at CafePress, though I've also looked other places.

I've also got to get one of those T-shirts that says, "Keep staring, maybe I'll do a trick." Or the one that says, "Gee thanks, I haven't been stared at enough today." These I forsee mostly for long outings in public places; museums, parks, fairs, etc. Places where I'm not supposed to be the sideshow or exhibit.

I was sorely tempted to say earlier this week, "Careful, or your eyes will stick that way." When I am not in my scooter, I am not nearly so mean.

The people I know best and/or see regularly "get it" whether or not I ever say anything, just by observation.

Modern medicine

On Monday, I overheard the spine surgeon talking in, I don't know how to phrase it, a corrective way with the other doctor, who's new to practice (a year is new), saying that "she must be in a lot of pain if she's come in every six weeks for a year." I sure hope he didn't mean me, because it was me who kept postponing procedures and doing more, wanting an extremely conservative approach worked around a busy schedule. Plus, when he kept worrying about the upper spine, I kept saying, "Ignore that! It's not bothering me. The symptoms there are minor."

The upper spine is just now bothering me substantially (very substantially). Both doctors have been empathetic to me and believe me, which counts for a lot, a whole lot. It's not something they teach in medical school and can be unlearned with clinical detachment. (Despite new course offerings on patient perspectives at some medical schools, patients are still treated as "other.") I sure hope young doctor didn't get in trouble.

I see the neurologist Monday. Hopefully she'll clear me right away. To save time, I sent over some test results for some things she'll probably want to exclude.

Pay Attention!

I'm probably mostly preaching to the converted in this post.

Pay attention. My vehicle was ticketed today. The officer failed to make any note of the disability placard or the scooter lift, both completely and easily visible from the outside of the car. I never take down my placard since I can't reach to replace it, so there can be no question about who failed to pay attention.

Pay attention. A friend pulled out a chair for me at lunch and left me momentarily; as I tried to position myself at a table, a woman immediately pushed the chair back to the table, in my way, and never looked back.

Pay attention. At an ice cream place last week, two teenagers came in, one with an assistance dog, one with a white pole. On the assistance dog's large square harness was a sign with huge letters asking people not to pet him, that he was working. At one point, noticing people's open stares at these individuals, I said, "disablism" under my breath to my daughter; she just nodded. She later pointed out something I couldn't notice when the teenagers sat down. Another teenager came up to the dog and petted him.

Pay attention. People with physical disabilities are not physical objects and they are not just too lazy to walk. I get tired of being treated as a physical object; people do not slow down with their carts or pay attention to what they are doing. I am not a grocery cart! As one of my friends, a gentle soul, says, "No wonder I see so many older people get so aggressive and snarly with their scooters in the stores." I don't recommend that since there are a lot of people, even young people, walking around with invisible disabilities (like me, only recently) who can be harmed by an accident. Pay attention if you're driving a scooter or using mobility equipment. Don't make assumptions about others' abilities.

Monday, March 24, 2008


I looked up the neurologist's practice. Let's see, there's three headache specialists, a dystonia person, a neuromuscular person, a Parkinson's/Alzheimer's person, etc. This neurologist I'm assigned to is the MS person. Looked up neurology and anesthesia--apparently acute MS can cause problems under anesthesia plus problems with spinal fluid during surgery. So I guess that's the possibility to be excluded.

They sent me home with all the MRIs. They included the written reports of the spine, but not the brain, which leaves me probably unnecessarily worried and as usual jumping to false conclusions. Found out I have a third disc bulge at C3-4. Things fall apart, Frida's center does not hold. But ultimately, I have so many diagnoses ruled out all the time that it would relieve the strongest hypochondriac. I usually get all worried completely unnecessarily and it turns out to be nothing. This is the pattern of my life.

I mean, I really can't have every major illness, can I? Or even one or two more. That's illogical. People have really serious conditions, but not a whole list of them. I have joked about collecting diagnoses the way other people have hobbies, but really, I do have hobbies.

I feel so high strung. I really do think it's the steroid--this is really weird for me. I can't unwind or focus. It's not as bad as acute episodes of mania I've seen in others, but I don't feel like myself.

Disability Parking, Surgery, Etc.

You know, unless I'm really missing something, someone who can stand up for a few hours at a time and jog for an hour at a time doesn't really need a disability placard for parking. I try to remain open minded about all the people who get around so much better than I do since I know several people with significant invisible disabilities that impair heart and respiratory function or mobility, but there's a limit...

What is irritating me is all the disabled people who park on the zebra stripes/ramps/access aisles so that other PWDs who use wheelchairs, scooters, walkers, or canes can't get into their car or into buildings. It happens all the time. I'd like to see something about disabilities put into drivers' handbooks so that at least the newest generation of drivers begins to learn what happens if they park against the access ramp into a building or park in a disabled spot for "just a moment" (the place looks full, so disabled person has to go elsewhere). Short of throwing myself on the hood of someone's car, which is really a terrible idea, I'm not sure what to do.

On the surgery issue: now I have to see a neurologist first before the spine surgeon will put me under anesthesia, though the MRI looks okay. I'm not sure what he's concerned about other than the aphasia, which since the MRI is clear, shouldn't produce a problem during surgery. The good news is that the recovery time will be shorter than I anticipated (can work in about a week, will have to wear the collar/brace). He's not concerned about postponing (was not showing Hoffman's today, though still feel weakness).

The decision I have to make is whether to use donor bone or have some grafted from my hip. My bone is very weak and I hate to predispose my hips to fracture since I've already fractured one, so donor bone seems the logical choice. Still, I worry about something being missed during screening. Donor bone means from an organ donor; what a gift for someone to give.

My internist seems a little worried and is urging me to seek multiple opinions, though he referred me to this surgeon in the first place. I have really limited time.


For years, I've dealt with criticism, suggestions, and insistence that I try various methods to heal my back. I have been lectured that I need to do weight lifting to help with the extraordinarily low bone density (which I did at the time I was told this). I have been told over and over that I need to do yoga or Pilates--nevermind that I have been ordered to keep my spine 100% in neutral positon at all times, no twisting or bending forward because of the very high risk of vertebral fractures. I tried to attend yoga class and had to exclude exercise after exercise. I have been able to do a fair amount of ballet, including barre work, in the past, not currently.

People have lectured me on using chiropractic, homeopathy, prayer, massage, herbs, nutrition, physical therapy, relaxation, improved ergonomics, better mattress, acupuncture, even though I used all of these modalities except acupuncture. I've been lectured on exercise and weight loss (I do exercise, and though I'm overweight (not obese), the back problems were just as bad when I was thin and at times worse). In addition, being somewhat overweight provides insurance against fractures for women with low bone density; my density has increased with my weight and my bone pain has decreased.

One woman used to just walk by and say: "acupuncture" to me, citing the new study that had come out. For muscle pain, it works. For one of my rheumatologic issues, the clinical trials show a worse outcome (at least no better) with the use of acupuncture. Plus with all the other modalities I use and specialists I must see, I really have limited time and financial resources to do more. It's the one thing I haven't tried. I do think it could give some relief, as have most of the other measures I've taken. But it's not going to be a cure.

I've also had people question me on why I didn't get surgery (not a candidate at the time, wouldn't help yet), tell me that I absolutely needed to do water aerobics (at a time when I already was doing water aerobics 2-3 times a week).

These aren't passing suggestions--I am open to suggestions that might help--but rather a dogged insistence and badgering that I'm not doing things right.

The advice is constant and unrelenting. And yesterday, when I mentioned surgery to someone, because of spinal cord compression that's causing nerve damage and is making me incontinent? Judgment, because back surgery is controversial and doesn't work. Well, becoming a quad doesn't really work for me either, not when I have a choice!

I'm tired of people's judgment that I'm at fault for a couple of genetic disorders and physical injuries that I have made every effort to heal with conservative measures. I'm tried of having to defend or explain myself. Any time I mention the back disorder (only because I can't physically do something or need to sit, etc.), people jump in with advice. There are some people, though, rare, who know others with chronic pain and who don't rush to judgment but who empathize even when I minimize ("just back pain").

Now I feel hesitant to tell others about surgery because they'll judge me for that despite spinal cord compression causing neurological damage and loss of function. Most family and close friends are more supportive, seeing how this has played out over the years.


My daughter was going stir crazy yesterday afternoon but pain made me unable to venture far from home. So we phoned up my grandparents and asked if they'd like company--a definite yes. And I could lounge on the couch or in a comfy chair. Plus my grandfather had done without internet for a couple of days, figuring we were busy and not wanting to bother us until Monday.

We visited for a while, then Grandma insisted on making dinner for us--"just sandwiches." I offered to help, but really could not do much at all. Of course, when Grandma says sandwiches, she means something far more complex, and 45 minutes of puttering in the kitchen is required. "Just sandwiches" means:
-the ham she cooked yesterday
-the roast she cooked yesterday
-potato, green beans, carrots
-a platterful of strawberries, bananas, apples, and cookies
-two kinds of bread, two kinds of chips
-fresh sliced tomatoes, crisp onions, condiments
-hand tossed salad with lots of goodies added (not grocery store prepackaged)
-ice cream and angel food cake
I've never seen her not be prepared for a whole houseful of people on a moment's notice, and not only can you not refuse, but she will send you home with food, too. I asked her how she manages to keep her house so neat since she's older (83) and gets tired--and she said she can still do everything fine, vacuuming, dusting, and all. My aunt and others help with some household projects, as does my husband. My uncle, who's cognitively disabled, also is a huge help, especially with difficult tasks such as getting the groceries in and unloaded (she has osteoporosis). But she still does most things on her own, said she can even get down on the floor to scrub at something if she needs to, and thinks it's good to maintain her strength and do as much as she does. She likes puttering in the kitchen and giving to her family. It exhausts me to watch her sometimes.

I miss making meals for my grandparents and having them over, though with my grandfather on oxygen and needing nebulizer treatments often, he can't get out of the house for long at all. Walking even around the house gets him too out of breath, and he gets very ill for a while.

My grandmother has talked to us about being the caregivers for my uncle when they pass away--my parents are in worse health than me plus significantly older than my uncle; the aunt who is closer in age is having health difficulties as well. The minister at my grandparents' church stopped by yesterday and mentioned a specific church based nursing home for my uncle when they pass away, but I told Grandma I didn't think he needed to be there, that he wouldn't be happy there. She also mentioned money to the minister (the cost is extraordinarily high), and he told her not to worry about that at all, that he would be taken care of. But unless he gets to the point where he cannot be cared for at home due to health problems, he should be with family, as we should all be. He's only in his mid-fifties. My mother-in-law's response to this a few weeks ago is that we didn't need an additional "burden"! Additional.

Grandma says she worries about my uncle being abused, especially sexually. And worries that if he were abused verbally/physically he wouldn't understand, be able to report it. She said he didn't seem to realize that he was clearly slighted by someone recently, someone he liked.

Both of my grandparents are still doing some work at home and enjoy it--their dining table was full of papers. My parents do most of the work for the business now, but my grandparents still do some.

I've been absent minded lately and had forgotten to add descriptors of images where it's not clear from the context what appears there.

Saturday, March 22, 2008

Frida 6, MRI Machine 0

I was too tired to be freaked out about the machine much this time. This time they remembered to tell me that there is a rubber catheter in my arm and they pull out the needle in the iv so that I don't need to worry when my elbow is bent that the vein is going to get punctured through (on MRI #4, they didn't tell me this, and the sharp vein pain started me worrying since they positioned me with my elbow bent and there was an iv in there). I couldn't relax my shoulder enough initially to get it flat on the table (spasm from C5-C6), and so I had to hold it that way for another 30 minutes since you're not supposed to move. They injected the gadolinium very slowly (over several minutes rather than a few seconds) so that the room didn't swim on me/I didn't get seasick this time. One of the techs had made these really cute Easter cupcakes for her coworkers--little Easter baskets with green icing for grass, jelly beans for eggs, and licorice basket handles.

Since I realize I'll need surgery, I've been doing too much housework and other projects--huge to do list--to make my life and others' lives easier while I'm recuperating. I'm doing what I can while I can, even though I can't do much and I really overdid it. Plenty of time to rest soon, though.

But starting out, everyone will have clean sheets and clean rooms and be able to find whatever they need. My filing is almost complete so that my husband or others can hand me the papers I need. The bathrooms and kitchen are immaculate and everything's picked up and maintainable between now and surgery. Lots of paperwork done, and couldn't sleep at 4:30 from pain, so I made a huge list of people I need to contact at work and among volunteers to delegate/instruct, as well as appointments that need to be cancelled or rescheduled. And trying to get all the work done I can so that someone else can take over the parts of my projects that I won't be able to do with ease. I am even preparing follow-up emails for friends and family so that my husband can fill in a few sentences and let people know how I am afterwards. I need to order a few extra presents for people's birthdays and for kids' birthday parties to have on hand, and make a list of dry goods that we're not stocked up on so my husband can get those in the next few days.

Since I am good at delegating, the ceiling fan blades will be clean, the dog will be washed and have trimmed nails, and the curtains in my bedroom will be washed. I will maintain the illusion of control over my life. And having an ordered, nice looking home makes me feel better. My daughter has a new wallet and new socks. The kids are stocked up on summer clothes (except swimsuits, shoes since they grow so fast, and short pjs). We have new kitchen towels and new bathroom hand towels, which needed replacing. The kids have the new sunglasses they needed. I am reorganizing some materials and books so others can find what I need/request.

I hate it when they send the films home with me because I spend a fair amount of time looking at them, looking up what's normal and what's pathological, and then worrying. There are some tiny bright white spots that hopefully aren't anything. One thing I can definitely tell from a particular view is why I need sinus/nose surgery. Is anyone else's brain asymmetric?

At this rate of working, I'll be ready to sit on my tail for a while. I'm not sure quite why it all seems like a good idea given my pain level, but it does.

Pregnant Woman with Disability Used for Target Practice

According to CNN, a young mother with a disability and who was pregnant, Dorothy Dixon, was recently tortured and beaten to death.

"Banished to the basement, the 29-year-old mother with a childlike mind
and another baby on the way had little more than a thin rug and a mattress to call her own on the chilly concrete floor.

Dorothy Dixon ate what she could forage from the refrigerator upstairs, where housemates used her for target practice with BBs, burned her with a glue gun and doused her with scalding liquid that peeled away her skin. They torched what few clothes she had, so she walked around naked. They often pummeled her with an aluminum bat or metal handle.

Dixon -- six months pregnant -- died after weeks of abuse."

In case you think that's an anomaly, visit YouTube videos such as this "comedy" about hunting disabled people:

Blogger doesn't seem to be posting videos right now, but go visit the link.
Lest you think the filmmaker is just a backwoods criminal, he's a film student at the Academy of Art University in San Francisco. Since when are hate crimes funny? He has not just one but multiple videos mocking disabled people. Damn Nazi.

Friday, March 21, 2008

Hand Strength

Cool postcard above, Tarot and Frida necklaces, and other merchandise available at No Monet. (Photo of a beautiful young woman in a kimono flipping the bird with both hands. Text: You go now! No sushi for you!)

You know it's time for spine surgery when you can't flip the bird anymore. Not that I try it regularly, but it's something I...just happened to find out.

Thursday, March 20, 2008

How Nurses and Doctors See Back Patients

This is how most nurses and doctors see back pain patients:

...the author says that 50% of chronic pain sufferers have personality disorders or affective disorders. I can vouch for that. They wear you out, the people who come in for chronic pain because they are people who are neurotic and difficult to work with. Antidepressants have been found to be very helpful in these people, along with psychological help. They seldom get it.
What ER Nurse describes in her post is that she's worn out; that pain patients are "difficult to work with" is a matter of projection. Let's try rewriting that paragraph:

...the author says that 50% of people who treat back pain have personality disorders or affective disorders, including sociopathy, narcissism, and inflated ego. I can vouch for that. They wear you out, the people whom you have to see for chronic pain because they are people who are neurotic and difficult to work with. Antidepressants have been found to be very helpful in these people, along with psychological help. They seldom get it.

One of ER Nurse's commenters believes that back pain patients believe that no level of pain is acceptable. Actually, most of us learn to deal with a high level of pain all the time, often without medications. And when we finally medicate, to get sleep or because the agony is so intense? Then we're considered drug addicts. Obviously ER Nurse could have benefited from some courses in medical humanities or medical ethics, but apparently they didn't have those when she was in school.

If she had taken statistics or remembered it, she would also know not to confuse causation and correlation. What many current studies show is that back patients often do experience depression, but as a result of the injury, not preceding it. And even if people who are depressed are more likely to get back pain, that doesn't make it their fault. People who are depressed are also more like to get stomach problems, headaches, and major heart problems, and no one blames them for those. Instead, they get treated. But it's faulty logic to assume that because some people with depression get back pain, all back pain patients are depressed, or neurotic, or whatever.

ER nurse also writes:

Why would you commit yourself to changing your lifestyle with exercise,
relaxation, etc. when you can go to the ER and get a quick fix?

Does she not realize that most chronic back pain patients spend fortunes on chiropractors, acupuncture, physical therapy, physical rehab, spine specialists? Back problems cause measurable functional disability. And yes, many people are going to get depressed about that, when they can no longer work and the bills start piling up, and when they can no longer enjoy regular life activities.

The lack of basic human empathy demonstrated in ER Nurse's post reflects what's wrong with medicine today. While I've not sought help at the ER, I should have two different times after accidents, and I did have to go to urgent care once when I was shrieking in pain. I had never tried a muscle relaxer before, but it did the trick, taking the pain down to a manageable level. Thank God the doctor didn't think I was an addict, and I was able to get on a plane 36 hours later as I was scheduled to do. And thank God for my regular doctors, who are trying to help me and help the pain, believing me in the process.


I have to have the surgical discectomy and fusion, sigh, since I'm having some neurological symptoms/signs that indicate compression and neural lesions or something or other. Apparently the injection made the symptoms worse rather than better because there is so little space in there (central cord compression). I get to have MRI #6, of the brain, on Saturday since doc said it would be committing malpractice not to do it. Do these MRI people ever stop working? They're virtual MRI elves. Doc said at one point when I was worrying about something or other that he likes me, which is good to know, because anytime you're a chronic patient and your body works in weird ways, you start wondering if people think you're a hypochondriac or have a bad personality in general. He said he knows I do research, so look up Hoffman's sign and hyperreflexia. And gave a list of about ten reasons I should have the surgery. Not anything to argue with there.

So I meet with das Wunderkind surgeon on Monday. I thought it took weeks to get in. Hopefully the surgery will help a lot. I have faith that it will. I'd much rather be in das Wunderkind's care than other surgeons'; I only have one spine and I'd rather it be treated well and without mistakes.

I can't stand the idea of the neck brace for 6 weeks. For goodness' sake, I hate turtlenecks. Gag. Plus I am very, very hot natured. I will sweat. I won't be able to breathe. I won't be able to read or incline myself the same ways. I will have terry cloth and steel choking me for six weeks. Noooo....

Beep Beep Beep This Important Message for the Abled Community Beep Beep Beep

To the abled community:
1. Keep your hands the fuck off my scooter and me.
2. No means no. It doesn't mean I am too polite to say yes or don't know what's good for me.
3. Stop staring. It makes you look stupid. Especially when your mouth hangs open.
4. The striped parking place? It's not an extra parking spot. It's so we can get into the lot. So when I am in front of your car hood saying back up, back the hell up.
5. Now that we're 18 years after ADA, consider a couple of $40 ramps for your businesses' entryways because gimps in wheelchairs/scooters like outings with their families sometimes (huh, there were two of us in one afternoon already). If you can afford $50,000 for new bumper boats, no, you are not exempt, even though you said you are. Wishful thinking doesn't make it so.
6. Take a picture, it will last longer. On second thought, don't, you creepy goddamn fetishist. I'm tired of seeing you everywhere and I'm about to start snapping your picture and turning it in.
7. Teach your kids some manners. That means not knocking into me. I don't care if they stare or ask questions. Stop letting them run around and slam into me.
8. I am a person, not an object. When I am in line, I am in line. Don't try to sneak in front of me. I see you. Pretending you don't see me doesn't work.
9. If you knock the basket off my scooter one more time instead of going around me, I'm going to wrap it around your neck.

Thank you. Steroids cause grumpiness?

A PostSecret Response

Now there's a response to the Frida card on the PostSecret website--that's the first time I've seen a response card in the same week.

In other Frida news, Coldplay has decided to call its new album Viva La Vida in honor of Frida Kahlo, who painted these words on her house.

Text: I don't know how you did it, but yes, I was thinking of you when I read your secret...I'm thinking of you and hope you're still thinking of me. Collage of Frida paintings.

Sunday, March 16, 2008

This Week on PostSecret

This week on PostSecret, the first postcard contains an image of Frida Kahlo with a statement about how the writer hopes there's someone else who feels as much a stranger in the world as he or she does. I like it, and I do.
Text: I used to think I was the strangest person in the world
but then I thought, there are so many people in the world, there must be someone just like
me who feels bizarre and flawed in the same ways I do
I would imagine her, and imagine that she must be out there thinking of me too.
well, I hope that if you are out there and read this and know that, yes, it's true I'm here,
and I'm just as strange as you.
Image of Frida Kahlo turned sideways, with text superimposed.

Saturday, March 15, 2008

Random observations for the week

1. My voting place was not accessible for the primary, so I had to vote in the open under the direct eye of one of the people monitoring the machines. I was told one booth was "HDA compliant" (!) but it was ADA compliant for visual disabilities or reading problems, not for wheelchairs/scooters. That's great they have the other booth, though. Since our voting booths are paper cardboard cutouts set up on plastic tables at an elementary school, could someone not just make one of these at a student or teacher desk? I know I wasn't the only disabled person all day. They had no plan in place for people with mobility issues.
2. My daughter got into horseback riding camp for this summer even though I accidentally missed the first deadline. Yay!
3. I'm thinking about rabbits for the kids from an animal sanctuary--they've been asking for a year, but I also keep thinking about moving and what having more pets in the house would do for resale (pets and people trekking in and out don't mix--the dog will already be a problem). Since our house is 1 1/2 stories, it's not going to work long-term. But we need to replace the carpets (ugh!, where do I go?, plus all the moving of stuff) and do a fair amount of other work. It may be a few years, so rabbits in the meantime or no? I want to make sure that they're taken care of well and get lots of attention and worry about that. What if I'm allergic? What if the dog loses his cool around the dog food bowl? We'd also have to umm, hover over them like hawks if we took them in the backyard at all since we have big hawks in our neighborhood, some of which have picked up local puppies and kitties for a snack.
4. I'm getting depressed by being in so much, even with the computer, books, some movie watching, and ordering some needed clothes and Easter basket items. But not feeling up to being out yet much and really can't do much beyond get dressed and do my work right now. Maybe it's the steroid 1:1 injection, too. Suggestions welcome.
5. My husband kept nagging at the local venue for Police tickets, and they conceded and let him have four seats together in the accessible section rather than just two.
6. I want out of the house. On the other hand, I'm also thinking about inviting a bunch of people over Easter weekend since I am going stir crazy, but the house is not in good shape and I'm not able to do a lot about it. I'm also considering getting rid of a lot of books but then I started getting panicky when I thought about the Kindle and worrying if books will be an endangered species. (However, I'll add they seem great for disability and environmental reasons and I'd like one.) Nevertheless, clearing through the clutter sometimes clears my head and makes me feel more organized/together. But some books I've had for 15 years, well, there are other books I'd still read first, and I don't see that I'll ever get around to them. There are others I'd feel guilty for parting with, and some more that I'd not get rid of even if I never read them again because I love them. I also need to organize all the books in logical ways. There are several ways to do this, neither of which is exactly right. If only I could sit/stand long enough.
7. I need to do my filing, too, and that would make me feel so much better. But I can't. Maybe if my husband brought some files downstairs and my mom came over and helped put everything in the right piles.

Sitting disability

By chance yesterday I ran into a website published in multiple languages on Sitting Disability. Sitting disability is marked by the inability to sit for long or at all, requiring the individual to lie down and, often, to be limited to the couch, a reclining chair, or bed. This is the condition I am in much of the time. Even a scooter only buys me so much time out. What I am excited about here is some information on ergonomic workstations so that I might actually be able to work full-time in the office someday. The work stations look odd, but there's no reason I can't have something set up like at home somewhere else. The setup isn't particularly expensive and just requires enough space. In the era of cubicle configurations and set workspaces/desks, I had not allowed myself to think outside the box enough. Currently this is what I would require to work more hours. "They'd never let me bring in a couch, and where would I put it?" I've asked myself.

Friday, March 14, 2008

Cystoscopy okay

The cystoscopy went fine today. Everything totally normal. Intense pain despite anesthetic, but very brief. I took Azo-standard after since the pain/cramping afterwards was intense in a different way. That's taken care of it. The doctor tried to distract me by asking about my job during the procedure, but I really couldn't talk very well. Grunted out something that she may have been able to understand, or not.

Spine/head still hurts, but stopped peeing at random except for immediately after epidural. Urologist agrees it's a spinal issue now. She slowed down a lot today, which is good since I have a hard time thinking as fast as she does right now. And she repeated herself, which is good since right now I'm forgetty. I think I've concluded she is a lot more personable than I initially thought--she's just sometimes thinking ahead to next steps without breaking the info down.

I almost got out of the cysto today because she was sure it was the spine issues after hearing about it and she forgot she hadn't done it last time. But hubby had to go and remind her. I'm sure it's better to be on the safe side, though, and some peace of mind.

More intelligent blogging will still have to wait. Drugs not cutting pain level enough. Just glad that I don't have a separate bladder issue to deal with.

Tuesday, March 11, 2008


I'm loopy right now but things went fine. No reaction to anestheia or steroid at all. They gave me Versed and fentanyl first because of my nervousness/fear so I don't even remember getting the general this time, or even being taken back to recovery this time. I remember talking about dissections with the anesthesiologist and then not caring about anything, and thinking, nope, not going to talk now, because I'll start saying stuff...

Spine dr. promises me I won't get a spinal headache and that things went well. Some achiness in shoulder, but neck feels better right now--may feel worse for a few days after the lido wears off, and then may feel better from the epidural.

2 med things down this week, one to go. No appointments next week--how'd that happen? Shh...don't tell anyone.

Going back to dozing...zzzz...

Update: Okay, with the lidocaine worn off, this hurts like hell. Have two important disability issues I want to blog about, but will have to happen later.

Monday, March 10, 2008

Always Get the Best Doctor Possible

Dear Reader (I've always longed to write that),
Thanks for sticking with me and my medical posts. This feels jumbly due to headache.

Today's note: always get the best doctor possible, one with good research skills, because you never know when you'll need the best of his or her skills, sometimes in a hurry. For complicated problems, get someone who teaches at the medical school or publishes extensively (and who knows what they're doing, is minimally invasive, etc.).

Doctors do a lot of work behind the scenes. When I thanked the doctor for his time, saying I knew it blew a hole in his schedule for today, he said he had to talk to medial experts at University of Chicago and the local medical university to determine the best way to test to get accurate results and avoid a bad adverse reaction while still also determining if I'd have an adverse reaction tomorrow. And he had to cull the periodicals as well, though he found little and what was suggested was insufficient--he said he didn't want to be cavalier in his approach because of my previous severe reactions. It's nice to be believed without having to do a "I told you so" later. He knows my history.

The allergy testing took 4 1/2 hours! My husband had to volunteer at the elementary school for 4 hours rather than 2 because I had underestimated so much (we're helping with the school bookfair). I feel badly about that since that's a half day of missed work time, and he'll be missing tomorrow to drive me. It's amazing how much he gets praised for helping out/volunteering (because he's male rather than female)--most of the women volunteering are also taking time off from full-time jobs. It is good for other dads to see him helping out--they may get the idea they can help out, too. :) Most of our volunteers most of the time are women who are already overcommitted/stretched too thin.

Oh, yes. The allergy testing took 4 1/2 hours. I thought I'd have quick skin testing. No. First skin testing, then injection of steroid starting at 1:10,000 dilution up to 1:1 full dose, waiting 30 minutes between injections as we got close to the full dose. About 10-12 pricks or injections altogether. And it took time to dilute all the solutions. The skin swelling with 1:1 was slightly larger than the control with histamine, but no systemic hives or reaction, and it's more of a dose than I'd get systemically from going locally into the epidural space. I got a migraine 3 hours in, and he asked what I take and was going to give me a drug sample, and I said, "I don't take anything." He looked surprised. I explained: "It's minor compared to the back pain."

I realized again why anesthesia is sometimes helpful with spinal epidurals--cortisone is a thick, gloppy substance, and it really hurts going into the skin compared to other injectables. Putting it into a blown disc is more painful than putting an epidural into a laboring woman with a normal disc. Still, I know several people who have had the injections without anesthesia. Some of them said it was the most excruciating experience they'd ever had, though brief. I am wondering if my doctor does the anesthesia because he doesn't like to see people in pain or if he is overmedicating for something that, though painful, is brief. Or if he's had someone move a lot. He doesn't ask people if they'd like anesethia or not, though I guess he might be negotiable. My grandmother said yesterday that her friend's husband had this done and it was terribly painful. I told her I'd be under, and she said, so was he. But he remembered it and still felt it. Thanks, Grandma. It's not like I was worried or anything. Sometimes sympathy can backfire.

The dr. also said said he can desensitize me to sulfasalazine (yippee!) so I can take it rather than methotrexate or embrel, but he thinks that I'd feel like crap on it because of the side effects. Might be worth a try, though, since I feel crappy from pain. It would be an expensive experiment to find out if I feel worse: 1. with pain and without sulfa, or 2. with sulfa and without pain. It's something to investigate/research at some point.

I keep forgetting to tell the spine doctor that I'm an understater. When I have a problem, I really mean it and it's probably worse than I'll say because I don't want--Procedures (I give "it's only a flesh wound" kinds of denial statements all the time). The allergist recommended I use my asthma inhaler right before the sedation tomorrow to avoid the propofol problems. So we're good to go tomorrow. As long as I don't confess my blogger id...

Friday, March 7, 2008

Why I Hate Anesthesia

1. During anesthesia, wake up. Each and every time, especially on Versed, otherwise known as truth serum.
2. While awake, reveal your deepest secrets, ones you had not even thought were secrets because the Conscious and Unconscious never conferred and said, "hey, maybe you don't want to say that." Realize with horror what you say at the time, but there's a disconnect between lips and brain. The lips are in control. The brain looks on but is unable to act to save itself. There are things that only two people should know about, and the other person is not someone in the surgery room. Make other confessions about issues you haven't even clarified with yourself and are not even sure are entirely true.
3. Eventually, have a reaction to the anesthesia because you are recovering from a respiratory infection that's lasted weeks and you didn't want to keep postponing. Uncontrollable coughing where you cannot take in any air. Wake up as doctor pats you on the back and says that you need to stop coughing. Try to stop coughing, but keep coughing. Tell nurse to remove socks because you're too hot, and you know being hot makes you cough more. Get drowsy again. Think you're at home. Ask someone to rub your back, thinking it's your husband. Wake up again when people laugh. Say something about sex and backrubs and husband. People stop laughing. Realize you've said something really wrong.
4. Conclude from surgery prep and someone messing with your very low back that sexual assault by some random stranger is about to happen. And that you're unable to act. Give doctor an earful and chewing out. Later, remember not being still. For a spinal procedure. Pass out again.
5. Wake up a minute later shrieking in 12-level pain on a scale of 10. Shake all over, uncontrollably, from pain. Hear doctor say, "good grief." Pray aloud for Gabriel and Michael to intercede on your behalf, because God seems to have taken a step back. Pass out again. Seconds later, yell at husband to turn music in the surgery room off and let the dog out. Apologize, saying you thought you were at home again (as if you shriek at people at home). Pass out again.
(If during wisdom tooth extraction, freak out about huge metal thing being put in your mouth and what's happening to your teeth. Realize this won't last forever. Pray you'll pass out again. Pass out again.
If during colonoscopy, freak out nurse and GI doctor (oh yes, very long time since you've seen her) by suddenly saying, "cool," and asking about the pictures on the screen.)
6. Wake up again. Say something about how this is a lot like time travel. Pass out again. Hear random comments of anesthesiologist, and respond to them with your own opinion. Everyone stops talking.
7. Wake up again when they're transferring you. The anesthesiologist tells you they almost had to stop the procedure completely, that they gave you Versed, the truth serum, after waking you up from the other drug and letting it wear off a little. Recognizing "Versed" and you don't mix, ask over and over, "I didn't say anything did I? Did I?"
8. Doctor comes in to talk to you and husband. He looks concerned but won't look your husband in the eye.
9. Get dressed. Realizing your socks are not on, recognize that those distant memories of discussing them with the nurse and the other memories did not happen ten years ago and weren't some weird dream but happened within the last half hour.
10. Remember later there's always a follow-up appointment scheduled--which you've been known to "forget." Can't forget with this doctor, follow-up too important.
11. Go to restroom. Look in mirror as you wash your hands. Look in horror at burst blood vessels around your eyes from coughing so much and not getting enough air.
12. Resolve not to go under again.
13. Later, when doctor recommends going under again, say that you don't think that's a good idea. Be glad he's so nice as to say, "oh...but you were sick then." Stupidly agree to go under again.
14. Hope that this time you won't talk on Versed.

Wednesday, March 5, 2008

Severe chest pain and the seven non-dwarves

I had severe left-sided chest pain this evening, but I had that a year ago and nothing was found except occasional very fast heart rate, thus the atenolol. I can't remember if they did an EKG last year. They did a monitor and an MRI since I was allergic to CT contrast, though the insurance co wouldn't pay for the MRI contrast.

So I took an extra atenolol since I'm on a low dose and can take 2. I feel better now. I'm wondering if I should be more worried, but since I'm currently working with seven specialists--
-spine doctor
-and don't forget physical therapist--
I really don't want to add cardiologist back into the mix. I'm hoping the allergist can deal with the shingles, which have popped up again (no stress, none, really). Is it really any wonder that I let the dermatology, endocrinology, and ENT issues go? Or that I can't find the time to meet with the psychologist to deal with all of it?

I generally try to do triage with myself, only one specialist and major issue at a time.

How did I get into this boat? I want off, I'm swimming back to shore.


Yesterday my husband delivered Girl Scout cookies to my grandparents and came back with a beautiful ivy with rose-colored accents in a beautiful pot. I asked who it was from and what it was for since the husband never comes bearing non-rose floral gifts. Turns out it was for me, from my grandparents, because of the health issues.

I should be taking care of them and sending them gifts, not the other way around. They're in poor health. I can't shop, how can they? I've planned to go over for several weeks now and couldn't, first because the kids had respiratory illnesses and we couldn't put my grandfather at risk, then because I couldn't sit up long. I couldn't even make it to my daughter's Girl Scout meeting last night. I had to lie down, had to.

My grandfather's at the end stages of his illness, of his life. His doctor spent some time talking to them about it recently in a very kind and compassionate way. I want to spend more time with them, though I have difficulty sitting in the kitchen, where seating is most comfortable for my grandfather. I also can't get my scooter into their house. I'm feeling frustrated not to be able to spend more time there, especially as there is not much time left.


Last night I went to sleep at the (for me) unthinkably early hour of 10:30 p.m., only to be awakened at 7 a.m. thinking that I was in the minivan and the alarm going off was the alert we get in reverse telling me that we were about to back into something. I grew increasingly panicky as neither the alarm nor the "car" would stop. I also dreamed that our sweet dog killed and snacked on a small puppy I was trying to save from getting onto a roadway as I was walking in the mountains (trust issues?). And that there was a moose on our street, and a baby moose who had made her way into the barbed wire fence in the back. We didn't know how to let her out without maddening mama moose, who could get over the fence both directions, no problem. The only weird thing was that mama moose had antlers, and mama meese don't have antlers. So there was some discussion of meese and antlers at a picnic at which everyone sat on one side of the bench, etc., and someone brought in ancient mini-antlers and skull (weirdly resembling the puppy skull) for demonstration.

Remember back in college when you used to dream that you couldn't make it to classes all day because you kept running late? I dreamed that I kept running late all day and couldn't get the kids to school. I think when I finally start catching up on sleep I start dreaming again. Maybe hydrocodone really does cause weird dreams, too? I took a low dose last night after being back off it all day. I could hardly hold my arms up while driving yesterday, and had this grinding pain in the neck.

Monday I have allergy testing for steroids (no antihistimines in the meantime, I'm getting sniffly and itchy already), Tuesday the spinal injection, Friday the cystoscopy. Sounds like a fun week all around.

Tuesday, March 4, 2008

When Really Stressed, Hide

Sometimes hiding works for a few hours, anyway...this song kept clanking through my head last night. Enjoy:

My only question is why in the German version does his other ear sometimes look like it's the one bitten off?

Monday, March 3, 2008

Products Plug

I've recently found the PhiferReader really helps in holding books since my arms and hands tire. Sometimes I still need to place it on my Levenger laplander lapdesk so I can lie down completely flat. The lapdesk has a firm rather than bean-baggy cushion which is much better for a good supportive surface for reading or working. Levenger does have a lapdesk that will also angle as a bookholder, but at 8.5 lbs, it's too heavy for me to use. The only problem with the Phifer reader? Constantly having to flip back the page holder, which tires my hands and arms and neck when it hurts. But I can read more quickly now and overall have to exert less painful effort.

The laptop cart has the potential to be helpful, though I find the two-sectioned ones can't drop the smaller tray low enough--I'd like document holders or book holders to be even lower so that I can see the pages easily rather than having them poised a foot too high. The middle post for the cart also sags too much for the laptop, meaning I type a little diagonally.

I can write on the laptop with the Levenger lapdesk on my knees or the lapcart positioned above me, but I find it difficult to extract myself from underneath the lapcart--that requires someone else to be around so I can get up since the wheels catch. I am having difficulty finding ways to write that don't tire my arms (lying down with lapcart or lapdesk) or my back/neck (sitting up and working at lapdesk) too much.

What we need are better multi-function tables/carts for work lying down--current models are geared toward people sitting up, though lying down you may need one tray lower. At least there are ledges now on these carts--I was limited to an angled hospital tray when I was growing up, and had to hold books and try to write at the same time.

All of these pieces of equipment help greatly, but I do find myself needing to alternate among them as I tire from using one position or type of exertion. A new page turner will be available in September--before, these things cost thousands of dollars; one of my friends could use one of these and hasn't been able to afford one. It would have to be positioned on something for someone who works lying down--it would be nice if it had a flat base!

Because I'm a big believer in small business enterprises, let me also point out that the inventor of StaticOff posted in the comments here and says to email if you have questions. Thanks for stopping by!

Sunday, March 2, 2008

Does Church Cause Disability?

Being told at an early age that the dentist won't hurt you and Mr. Rogers's reassurance that you that you can't go down the bathtub drain inspire corollary thoughts: the possibility that someone sometime was hurt by the dentist, and that someone's pipes somewhere were large enough to let a small child pass through. (Yes, my fears started early.) In much the same way, being given the book Why Bad Things Happen to Good People by two different people when I was hospitalized as a child led me to believe that it was at least possible my problems were my fault. I was confused by the implication I was good (how would the gift givers know?) and the implication that God was involved, or possibly even created my physical problems to "test" me, as one person said. It also made me realize that such an explanation was needed because some people believed bad things happen only to bad people, and that people could think this of me. My prayers still didn't center on cures but upon practicalities--such as the relief of severe pain or to be able to take dance lessons, though I tried not to turn God into Santa Claus.

What I noticed at a church we attended a few years ago is that most prayer concerns and discussions centered on people's illnesses and disabilities. Although the title here is provocative and I actually don't think that church causes illness or disability by focusing on it, sometimes I felt my personal privacy invaded by too many questions I did not want to answer (and I felt it would be rude not to answer). At the same time, explaining (and apologizing for) my disability is someting I grew accustomed to because of the modes of discussion at church. These days I allow myself more privacy. I feel comfortable giving people a very general response, but will generally only give specifics to those I feel close to. When one person described me as a chronic complainer, I was embarrassed--I saw myself as a chronic explainer--I felt the need to justify how and why I did things as I did, because of what I'll call "church talk." In fact, the effect was the opposite of what I intended--rather than reducing attention by explaining why I had to move as I did and why I would not or could not do some things, I emphasized my illness so it looked as if that was what I was most concerned about. But in my accustomed contexts (church, family, some friends but not others), chronic explaining was expected.

These days I don't attend church because organized religion does not fit my beliefs; though there are some shared values, I was unhappy with some of the ideas my children were acquiring, too many of which did not accord at all with our beliefs. Although our church's philosophy and the ministers are liberal, the congregation and the teachers were not particularly so. In addition, I can't go to church because of the seating. It's not worth the extra pain. I'd rather have more time with my children out of pain. We're still on the mailing list for the class, and it's basically crisis after crisis. I don't mean to be unsupportive of others, but I'd rather not focus my time and energies on acquaintances of acquaintances who have had some injury or illness. Though I wish every human being well and hope for others' good health, I can't allow myself to be drawn into what amounts to gossip about people who may not want their coworkers or friends giving them that much public attention. I did confuse people, though, in that I never raised prayer concerns for myself, compelling the leaders after one lengthy pause to start adding in "and concerns felt but unstated" in the weekly prayers.

When I ran into one of the women at a theater in December, she was amused, in fact laughed, at the way I walked. Despite knowing about the health problems, I don't think people often realize or make the connections. I don't need that. Sometimes the overfocus on distant others keeps people from seeing what is close at hand.

Additional thought: For those who say that we are never given more than we can bear, they're wrong. Sometimes it is too much and survival involves a catalytic reaction, a fundamental change, because to survive some pains means that part of you has to die to pull through. You're not the same person. Simplistic truisms such as, "it's for the best" or "I know how you feel, I pulled a muscle once" don't cut it in terms of empathy.

Don't Touch Me!

Remember the comedy routine in which Bill Cosby imitates two kids fighting: "Dad, she's touching me!"? Children must be taught to respect one another's space, not to poke one another gleefully for the fun of it, one-sided fun. But when you're a grown up and disabled, you find yourself still complaining that people are touching you, but are taken no more seriously than a small child complaining from the backseat.

If you're abled and reading this, don't ever make the mistake of trying to help someone by pushing them--you could injure them or yourself. Ask if they need help, and listen carefully to the instructions. Wheelchairs and scooters (w/s) tip easily (and that's not an invitation). When someone in a w/s exits or enters in front of you, give space. If the w/s doesn't clear the threshold the first time, the person will have to back up a few inches and try again at higher speed (with a bigger and more painful taa-daa landing). This is NOT an invitation to push the w/s (whose owner's back may be in pain and may not appreciate pushing. For people with limited strength, you could push them out of the chair if you knock them off balance). The only reason the w/s user went through slowly the first time is because they sometimes can or thought they could, and low speed is less painful on big bumps. If you're standing an inch behind, by the way, the w/s user can't see you and risks backing over you.

And if you see a w/s user trying to drive the w/s off the lift, don't push it from behind, for God's sake! It's equipped with batteries that can exert more of the right kind of energy than you can. Be patient. The w/s user has far more experience than you, even if they're not as strong as you. The bumpers on the lift are there for a reason, and if you'll back up, the user can back off the ramp (the easier way) rather than getting stuck from your pushing and risking ruining a delicate and expensive piece of equipment by thudding off of it. Gratitude this week to the person who stayed near me but didn't interfere when I had trouble getting it off the lift. That worked much easier than the next day when someone pushed it, meaning the whole thing got stuck in a far worse way, pushing it so it had to go off sideways, giving me more pain in trying to move it and risking injury because of my limitations.

Don't let your kid (and all his/her friends) run past a w/s user over and over, pulling and shoving on the basket (which will fall off). The basket is not a handhold for you, either. It's unstable and will fall off! And if you push the scooter to squeeze past, you're pushing the person in it, too.

On Saturday, I suddenly graduated from a snarky, "Could you move" to a vehement "No!" as if having taken a '60s style self-empowerment class. In a line we were in this weekend, people invariably, truly invariably, cut in front of me instead of between two standing people. That would have been fine if they didn't shove me. I think they expected me to move. The person behind me was very close so I couldn't back up. I think they only saw the physical object and not the person in it, as in, oh, shorter person, a break in the crowd. After dealing with the bumping and shoving a few times, I accidentally bumped into the person in front of me trying to narrow the very narrow gap slightly and shouted, "No!" at the next two people who tried to do it, and said, "That's rude." My pain level was through the roof, and I was out only for the kids' sake, because I wanted to be with them, against my better judgment. There has got to be some kind of bad karma for pushing people in a w/s.

And I don't like being touched when I hurt. Don't touch me, either, unless we're already on a hugging basis, and that does not include most people. And I really don't want to shake your hand, because my hands hurt. Don't take it personally. I like everyone better with their hands not touching me, and I really don't want the bones in my hands fractured when you choose to prove your strong, manly grip.

Gratitude to the teenage waiter for asking me about the kids' orders this weekend, recognizing that I was the one responsible for the decision.

In other news, last night I dreamt I was at Manderley again. No, seriously, having combined what was left of the hydrocodone and a muscle relaxer (not a permitted combination, but very little pain medicine left), I dreamed that the employers decided that anyone who had gone on leave or part-time ever could not come back to work. Oh, now we're violating FMLA and other leave policies. Hmm, not sure what this could mean. Lack of trust? And then there was something about a big boat, turtles rising to the surface of the water in response to the boat, divers coming in with harpoons, something about oysters, and the capture and torture of innocent people. I think I'll skip the interpretations there. Last night the pain in my neck was the worst it's been since 2005 (September 29 and for several weeks after, very memorable sudden change). Everyone else had gone to a hockey game, and I called my husband when he was at the train station sobbing about being out of medicine since the pharmacy lost the refill my doctor called in. I didn't even cry during childbirth, and only cried out once or twice during each birth, near the end. I had my children naturally, which I don't take as some kind of badge of honor since births vary, but as a mark that I can deal with a lot of pain without needing drugs. I usually don't even take them for back pain. Upon getting the refill this afternoon, I think I passed out ten minutes after I took the dose from pain relief. I don't even remember closing my eyes.

The pain has been so much worse. I did far, far too much this week and am paying for it. I still didn't expect the neck pain rather than low back pain. I can't even feel the low back pain right now because the neck pain is so severe. I'm hoping things calm down.