Sunday, October 26, 2008

Miss Independent

After not feeling well last week, I did what I always do when I feel a bit better, I overdid it. For some reason I also got the brilliant idea that I could (yes) and should (no) open a door by myself while on the scooter. Given the length of the platform compared to my small scooter or a wheelchair, how I must angle and how far forward I must reach, how I must reposition to get myself through the door while holding it open...well, I pulled something around one of my thoracic vertebrae. Usually I'm smarter and just wait a few minutes for someone to come along. Or turn the scooter off and call someone in the building.

Friday night and most of Saturday I couldn't eat from pain, finally managed to get the edge off of it enough to take my daughter to the Girl Scout Halloween festival. I know how to prevent this (not open doors)--I know there are certain things I shouldn't do. I wonder if talking to an occupational therapist though would allow me to learn to do this kind of thing without pain or injury. I like doing things for myself.

The boys returned from their camping trip a bit ago, smelly, tired, and happy.

My in-laws saw on Friday how much my daughter helps out while they're still thinking what to do. I don't even ask her for help in this regard--I was going to ask a grown-up. But she spots the best seating for me, pulled out the right two chairs. She also helps me with the remote to reload the lift so I don't have to strain forward. And when I headed to the restroom at the game, she said the disability stall was accessible, that she'd already checked it out for me. She can tell as well as I can whether I can get the scooter into a space or not. And didn't seem to mind last night that I couldn't make the easy dinner I'd planned and could only warm up Amy's frozen meals.

What I've also noticed is that her friends become more observant from being around her, for example noticing which entrances I can get in and which I can't, how and why certain accommodations are needed. And her lack of self consciousness about all of it carries over to them.

I've injured myself like this before, actually much more overall during my first week of scooter use. I can't wait until it calms down again.

Saturday, October 25, 2008

Volleyball!

My daughter has gone from making no serves over the net during games to playing two back-to-back games last night (actually 2 sets of 3 games) and getting all but 2 of her serves over and scoring more points. I'm not sure what happened, but she held back less, and this is what made the difference more than skill. Confidence. They lost the first set, against the strongest team of the season, but won the second set, all 3 games. I thought she'd feel more pressured since her grandparents were there last night. I like this sport because all the kids get to play/rotate, and her coach is excellent, never letting the strongest players take over, so that the weaker players can learn. And that's what will allow all of them growth. She also allows only positive comments, which some of them definitely need, and which one of the stronger players needs because she's hard on both others and herself. They worked together more like a team last night.

It's fun to see them grow and learn.

Friday, October 17, 2008

So much for intuition

The chiropractor/acupuncturist had said he guaranteed my illness is not autoimmune or spondylitis related. So much for that. My ANA is higher than it should be but not too bad and needs to be monitored, I have anti-thyroid antibodies, and have elevated sed rate and liver enzymes. None of these really concerning, but some level of autoimmune issues, I think so. Let's hope it settles down.

I've opted to go with the new rheumatologist.

So long as chiropractor or someone can get my thoracic vertebrae mobile again, I'm happy. Multiple modalities, yessirree.

UPDATE: What the hell is happening to my body? I don't know what to expect from it or what to do for it. I want to get better. I really do. I don't need more illnesses or symptoms.
UPDATE TO UPDATE: That's way too dramatic for minor results that aren't even needing treatment. If I get hypothyroid, for example? Pills. I just crave some stasis.
IRONY: I try to google for more information and come up with: my blog.

Thursday, October 16, 2008

I’ve Turned into a Stereotype

Today I had a follow-up appointment with the regular rheumatologist. The second-opinion rheumatologist is out-of-network but I’m sensing it may be well worth the sacrifice to go back, contingent on total TNF coverage if I need it ($15,000 a year).

After a very high pain night, I had difficulty with dressing and getting ready for the appointment. I showed up at noon with no makeup, hair still wet, eyes probably bleary from lack of sleep. Between fits of pain and sleep, I had taken no notice of the weather, did not take notice until I was halfway to the office and began to fill chilled. I wore short sleeves, backless shoes and short pants, easy clothes that were close at hand and involved no decision making. And came in asking for a new prescription for a narcotic, no less.

How clear a picture of pain could I be?

But to the doctors, such a picture paints a story of drug use or of depression only, not immediate and severe pain.

The doctor, who has offered antidepressants before, tried very hard to push them on me this time. There’s not a lot he can do to help right now, but I sense him wanting to as best he can. My appearance and demeanor (honestly, not giving a shit) probably did tell the story of depression to him. To me, it was the aftermath of high pain. I had to explain that depression for me is situational and when I can get out more and when my pain is less, I am fine. I understand that antidepressants can increase serotonin and thus relieve pain, but for many reasons that’s not my chosen course. In addition, he still seems to question that level of pain for me, pointing out that the lack of changes on x-ray and MRI (common for women with spondyloarthropathy).

As I returned to the car, it occurred to me I don’t care whether I am believed. I don’t care what he thinks. I only care about proper treatments, doing what I need to do. I don’t care if he thinks I need the scooter or not. I do what I need to do, to reduce the number of mornings like this.

There was vomit in the elevator—someone had apparently not told staff members so it could be cleaned up. Few were around since I was the last patient before lunch—I had no choice but to use that elevator and then find a staff member. Why would I use wheels if I did not need them? Walking, I could have better avoided such. Walking, I can avoid so many indignities, only my stiffness getting mocked at times.

The rheumatologist stressed the need for physical therapy as helpful. As if I were not. My husband asked if I told him how much physical therapy I've done in the past year. It had not occurred to me the rheumatologist did not know--my spine doctor writes those referrals, and how that actually flares up my SI joints, as swimming does not. Regardless, I'm too tired to argue, to make my case, to defend. My pain is, and that is all.

One Glimpse

Sometimes I wonder what it's like for readers who drop by and see one post from my blog, or even just a week's worth. There's a lot of personal history without a context: one daily struggle, but not set among many daily struggles; one incident of disablism, but not set among many incidents of disablism. The bigger picture is missing.

Also missing is the larger context of the blog itself, it as one of many disability blogs, my voice just one of many much stronger and with more to say, but each of us contributing to a shared cause, a shared destiny, a shared dream. Missing from a single glimpse into my blog is the sense of built community among people with disabilities, the support networks we have, the postcards from Elizabeth and the emails fron Donimo, for example, the comments that continue conversations and generate new ideas or refine them.

Missing too are my recognitions, ones that I began to have before I became a disability blogger myself, recognitions including but not limited to:
-my own disability identity
-that struggles for accessibility are not individual anomalies but part of a far larger pattern
-that part-time use of mobility equipment (almost full-time outside home) happens and is acceptable for me, that I will have to deal with judgments but can do so
-that the way is still being paved, and that I need to contribute to the process

I feel a sense of loss with blogging, too, often feeling acutely what I haven't written that needs to be said. People come here looking for "last resort to get out of pain," "does autism qualify for 504?," "proving disability with spondylitis," and so many other important issues. My blog receives major hits for ADA legislation, which I've not yet updated with new ADA Restoration information. Of course there are also people who come looking for Chris Martin and Yael Naim lyrics, but these are not my audience. I haven't updated my tags, so "last resort to get out of pain" directs to acupuncture, not intractable pain.

I believe in autobiography, in the power of each individual story by each individual blogger. Yours are stories that matter, stories that capture my heart, stories I go back to. You encourage me when I'm down, remind me to keep my eyes on the future. Through blogs, I read about the ADAPT activists who shut down offices in Washington, who risk their own health and well-being for all of us, for me and you and you and you--for those who are disabled and for those who are not disabled, maybe even callous toward disability, but who will be disabled in the future. How else would I know of you, of your courage and your arrests? There is too little information on disability in the media in general.

And I see so many reaching out to others even as they hurt--Dave for example, sharing tea with someone who needs it while his damaged wheelchair impedes movement.

Every one of you whose blogs I read, who read mine, give me so much. I have not had to struggle alone in learning how to navigate with wheels. Even in those first days, I had disability blogs to read at the end of the day. I felt supported, nurtured, loved through those initial challenges. I can always count on readers with disabilities to "get it" even when others do not, because you've been there and you've seen.

Monday, October 13, 2008

Discomfort

I feel like upset welling up, though I can't cry and I can't even express what's bothering me. Is it the pain, the not getting things done, the social issue of disability?

Have I overcome my own discomfort with use of adaptive equipment? Not really. Of course people see the equipment. Sometimes I wish more of them could see me rather than shove past me, run into me when there's plenty of room, crowd me when there is more than enough space. I'm tired of having to assert myself so much, tired of it. For goodness' sake, I don't want a large nine-year old attempting to climb over my body, using the platform of my scooter and me, rather than walking around me by one step. More aggravating when adults do it.

I think maybe I'm just missing my old life, readjusting. The work, the friends, getting out. I don't feel comfortable with "grieving" anything. I prefer self acceptance, acceptance of disability from me as well as others.

Such are the times abled people would rather not think about. The quality of my life doesn't go down from using a scooter or from needing some more time at home, more rest, more accommodations. At what point does it go down, and does temporarily "down" reinforce other's disablism, that our lives really are less in some way?

Saturday, October 11, 2008

Don't Tip the Scooter

Tuesday I rode a tram with the kids, first time on any public transport with the scooter. The whole thing almost tipped over backwards on the ramp, the front wheel going off the ground. And the tram was low, not even a bus. The driver, who was standing there next to me, was as scared as I was, I think, gauging by the exclamation and the facial expression. With two staff people and my husband there, though, I didn't flip. This isn't something I anticipate trying by myself anytime soon.

The scary part (if this isn't scary) is that I have no control over it once it descends--once the back wheels drop off the ledge, there is no braking because the acceleration and gravity takes care of the rest. I also can't control turning at that point because it's too fast. If it doesn't go on the ramp straight within a hair's width, I'm screwed.

Dangerous! Lifts are better.

Even if the doctors can't see my pain level, other people can. When our Tai Chi friend asked how I am doing this week, my husband mentioned where we were going. He exclaimed, "She can't do that!" (He said this from concern, he really does understand and see the pain level.) Ooh, he misunderstands my stubbornness. I had to drug myself heavily to deal with being out so long, but it was well worth it.

Yay, Second Opinion

Someone tell me why pre-1990 doctors' offices are not very accessible, either the rooms or hallways. Is this because it was anticipated that no one visits offices in a wheelchair or scooter? And someone tell me why post-1990 offices are not very wheelchair accessible either. I mean, there's really not enough room to get around the scooter. I'm stuck in the middle of the room like an extra piece of furniture.

I went to another rheumatologist yesterday for a second opinion, just to make sure we weren't missing anything in terms of either diagnosis or treatment. He said definite spondyloarthropathy, though which subset of this general category isn't quite clear yet. And he agreed with trying to stay on NSAIDs for pain relief, possibly considering TNFs in the future, though it's risky because of my pneumonia history.

It was good to have someone take a step back and reevaluate this information who's not been on the roller coaster of multiple back and health problems with me over the past five years. I don't know why, but it makes me feel better to have a firmed up diagnosis (some of the secondary diagnoses still apply). He did run some additional tests just to make sure there are no other additional problems. The doctor said my ESR is much higher than it should be and that doesn't have bearing on the diagnosis.

I am happy to report that my knee is doing so much better and has stopped grating back and forth in the way that it had. I've had mild crepitation for years, but this was an abrupt and painful, gaaah feeling when I moved my knee. This makes me wonder if I'd just injured it temporarily.

When we were discussing TNFs versus NSAIDs, I mentioned that I get to the point of passing out from pain and he looked at me doubtfully. While he was dictating notes in the hallway, he stopped the recorder a few times to ask questions (I don't feel objectified when it's interactive and when it's a very small office without a lot of patients there). He dictated something about "dizziness with pain," then a little later stopped and asked why I am on atenolol--I said tachycardia, and he looked surprised. I didn't think to say tachycardia followed by syncope if I don't control the pain. Argh, none of them quite get it. Why do I "need" for them to? Maybe I don't. A better diagnosis was what I was looking for.

Monday, October 6, 2008

Resource for Severe Pain

I came across a great resource on very severe pain, its consequences, and its treatment and am posting the link in case it is helpful to anyone else:
http://pain-topics.org/pdf/IntractablePainSurvival.pdf
Although the guide doesn't focus on chronic pain, but rather intractable pain which begins causing physiologic changes (such as autonomic dysfunction) and is severely debilitating, much of the information is useful for chronic pain patients as well, I think. I'm glad I'm not at this pain level all the time. Generally I'm lucky in that I can manage to prevent that level of pain by using my scooter, not doing too much, taking pain meds, etc. Sometimes I do have it for several days, sometimes longer. It's why I must remember to listen to my own body.

Last night I pointed out to my in-laws that the dog is always bouncy crazy around them, wanting to play, but never does that with me. They pointed out he moves carefully around me in order not to hurt me. I just thought he was avoiding me and had hurt feelings about it sometimes when he won't come close.

Weekend Update

My heart/blood pressure issues were so much better for so long. And then I very nearly passed out last night, had to call my in-laws over. I'd let the pain get out of hand again. I just live with it. It's difficult for me to focus or rest when it's that high. It still hurts today, and though I want out, my body says no, bad idea. I feel so anti-intellectual, not my intent, but my state. I had thought I was over that, the heart/bp, not the not-smartness. Apparently not.

I went to a seminar on Saturday for people with whom I share a common disability. It was nice to be among others with the same issues. I wish there were more disability awareness among the group because I think that would help people cope a lot more and accept themselves. I was very careful about how I projected my own energies, as I was the only scooter user there (in discussion, I realized there were others who use them for distance but didn't bring them in). I wanted to make sure I was positive, suggesting it's okay to be me, it's okay to use my scooter when I need it. One woman was worrying about what would happen to her son someday, whether...and she silenced herself. There were a lot of people with difficulty walking and using canes, and a couple of people who had to go lie down partway through. I felt like I was in a roomful of "me"'s. There was some good information there, and I'll stay in touch with some of the other people to share information and tips.

Part of me wanted to say, "get a grip" to some people, that it's not fatal and you are blessed not to be dealing with a more difficult, life-threatening disability or health problem. You can live with very severe chronic pain. Many do. I know people are grieving life changes though or are confused about what they are facing. Again, disability awareness and self acceptance would help a great deal.

Thursday, October 2, 2008

Happy Happy

I like being at swimming--never any disablism.