Tuesday, September 30, 2008

In today's news...and "Pictures at an Exhibition"

...nothing really happened. To think I used to long for quiet days.

The kids complained about outdoor activities (!?) Sunday, despite the fall bonuses of pumpkins, autumn flowers, and arts and crafts at our favorite outdoor place. It was hot. So instead we went to the art museum. People had their Very Civil hats on there, so it was quite refreshing to do a polite ballet with other patrons in the museum. No one seemed to be impatient with me being there. I noticed I was saying, "Sorry," a lot when someone moved, and I wondered, "why am I saying that?" Not the best choice of words. I think I made people nervous when I would edge up next to them to see a picture, but I can get an few inches from someone without bumping them, at the same distance other people would. I'm not sure if they felt they should move over a little or if they were worried I would bump them or both.

Anyone else remember that musical piece by Mussorgsky, "Pictures at an Exhibition?" Genius piece.

I whispered to my daughter what a blessing the scooter is, this scooter. She nodded. A year ago I would not have been able to see these paintings. Just over a year ago I was spending a lot of time lying down on benches in a science museum as the kids went from exhibit to exhibit. My sister-in-law said, "you need a wheelchair."

The exhibit was awesome, the best I've seen in this lifetime, painting after painting I've only seen in books, not obscure work. Even the paintings that were a little more obscure were ones I have studied. I wouldn't mind going again, though the drive created a lot of pain.

There were only a couple of children despite the huge crowds. I was glad my son was quite happy as soon as we handed him an audio tour guide. I think my daughter gained much from the collection too.

Sunday, September 28, 2008

The Tao of Disability

78.
Nothing in the world is as soft and yielding as water,
Yet nothing can better overcome the hard and strong,
For they can neither control nor do away with it.

The soft overcomes the hard,
The yielding overcomes the strong;
Every person knows this,
But no one can practice it...
--Tao Te Ching

How many applications does this have to disability? To start with, civil disobedience, pain, the stereotype that we must overcome, the idea that strength is in itself a virtue.

Friday, September 26, 2008

Synvisc?

Has anyone else heard of synvisc for knees, some kind of injection that's supposed to build up the joint? While I can find most anyone who's on some kind of medicine or has had some kind of procedure, this one is new for me. The rheumatologist suggested it on the phone if things get worse, though it may just be another carrot. The knee pain is far outranking the SI pain right now, though putting the gel cushion under my seat helped tonight.

Yes, I've googled, but I find what's in the prescribing info to be one dimensional.

How can girls get better within a set of volleyball games? The difference between the first and third games tonight was surprising.

I ran into a friend there tonight--we used to see each other at least several times a week, and for a while every day, for seven years. We met when our first babies were a few months old. When our youngest kids headed to separate kindergartens a few years ago, we saw each other less and less--now it's been a year and a half. How does time get away from us, how can we miss seeing people we like so much? She saw me first and called to me, didn't blink an eye about the scooter. I said, my back got worse, she said, "I can see that." Nice how we fell right back into our old chattiness right away. Glad I will be seeing her weekly for a while. I needed that. :)

(Synvisc: which part of the bird do they make it from exactly?:
"tell your doctor if you are allergic to products from birds—such as feathers, eggs or poultry.")

Thursday, September 25, 2008

Swimming Through

Why oh why does my stomach hurt? Oh yes, NSAIDs.

I'm afraid I just can't be positive right now. Is this okay with you people?

I like the instructor at the swimming class today (different people on different days). I don't know what these people eat for breakfast to have so much energy and humor, but I want some of it.

Things really aren't bad right now. They're just humdrum. Humdrum. humdrum humdrum redrum redrum. I feel like I'm just perched all day until the kids get home. Off course they have their homework and after school activities. I live for the weekends with them, except they have a lot of activities then too.

Saturday, September 20, 2008

An Element of Blank

Pain has an element of blank;
It cannot recollect
When it began, or if there were
A day when it was not.

It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.

--Emily Dickinson

Wednesday, September 17, 2008

Oh, Carp!

The rheumatologist sent a letter to my primary care physician that says I am physically disabled, have severe degenerative joint disease of my knees (so I guess he did see that and reads into it more than I did), possible spondylarthropathy, etc., that I have poor prognosis for improvement and that he believes I will be unable to functionally perform any job duties, school, etc. I guess the knee pain is patently obvious while the spine is mostly from my description. It hurts far worse than knees! While that letter is important for multiple insurance and benefits purposes for the long term, I know that I can and will persevere and more in many ways, if not take up other forms of work.

So I guess I was mistaking his impartiality/objectivity for not understanding. On that note, it probably is best to stay more upbeat with patients since you don't want people to get down and not meet their potentials or see themselves as unable to recover. Ironic, isn't it? It's probably difficult to walk that fine line between empathizing and minimizing. I think I should stop thinking about it so much.

I will say that the swimming helps and the NSAID is a temporary godsend. I hope that I can use it for quite a while without stomach problems.

Spondylitis or Not?

I have an elevated ESR (sed) rate and negative rheumatoid factor, which continues to confirm I have spondylitis or I don't have spondylitis. Now the rheumatologist is backing out on the spondylitis diagnosis and suggesting maybe I just have osteoarthritis, even though my sed rate is much higher than it was. I'm confused and frankly, depressed. I don't think seeing doctors is good for me.

No Remicade for me, no Enbrel for me despite pain level. The new NSAID is working and helping some, thank goodness. I realized I actually do have a lot of morning stiffness now that I don't have much morning stiffness. I don't know that the rheumatologist believes me. I don't need him to believe me. I just want him to treat me appropriately. Whichever the diagnosis, the treatment is the same. I don’t expect that any doctor would take everything I say as absolute—that wouldn’t be objective science; I also question what they say—it’s only fair since when I see someone we both bring our biases to the table. What I would like to see is a physician who can entertain the idea that I might be right as much as the idea that I might be wrong (about pain level, etc.).

I really am depressed now, and it's from the doctor visit more than the level of disability. He held Remicade out like a carrot and when the lab results came back as he expected, no carrot? It's not great for the immune system, but if his reasoning is that's what he's concerned about, he's not told me.

He wanted me to ask the surgeon about any evidence of ankylosing spondylitis/joint inflammation during surgery and about the bone quality. The spine surgeon said no evidence of ankylosing spondylitis. But I never thought I had it in my neck! In my low back, my SI joints, my knee. I had a disc herniation in my neck along with the osteoporotic issues.

I feel depressed, I feel unbelieved and unbelievable.

I know that pain is subjective and not truly quantifiable and that one person’s severe is not another person’s severe--but I had natural childbirths. I can take pain—I engage in it like a Zen practice--thinking mind over matter, I can deal with this, I can deal with this, a few more minutes until I can lie down, concentrate on other things, focus on other things in the room--until I passed out from pain while doing this. Now I recognize there are some limits to mind over matter.

I hear writing about health issues can alleviate depression at least.

I should be blogging about ADAPT and ADA Restoration and more important things.

Update: I think some of the depression was PMS, worst right before. Aunt Flo just showed up at the door. (Oh my goodness, the things I would never tell people otherwise.)

Monday, September 15, 2008

Patience?

One of my friends tonight said what patience I have with physical obstacles and people--she saw a middle school principal almost back over me--I was already getting the scooter off the lift before said fluff head principal even approached or got into her car. I have to stay behind the lift to raise it back into the van, thus I was more behind her car than my van. If she'd *thought* she could have figured this out, that I was behind her car because I had to be, not because I wanted to be. Then she stopped her car and glared at me. Way to pull out the welcome wagon.

The only accessible entrance to the middle school gym, where my daughter plays volleyball, requires me to traverse the side of the court where I can get thunked by balls (and almost did) from the practice before my daughters'. I can't ride side saddle and look for balls. I wish people could figure out things like this. I look before I cross--no balls likely to hit me--I start to cross but can't keep looking, now there are balls flying my way and people yelling at me that I shouldn't have kept going. The regular entrance to the gym has a very small step just high enough to make it inaccessible.

This is why I avoid sports practices and games. Normally I try to use airplane rules for myself for everything--all meetings and events--first in, last out. That prevents accidents, crowding, etc. and allows me to get an accessible parking place. It does not, however, prevent someone's child from scooting up close to me between me and the bleacher and using her feet to scratch paint from my scooter and bumping me until I tell her nicely to stop and then her mom gets mad.

Oh, yes, and the coach? Looks right at me and hands all the other parents information packets but not me. Gives me a "who are you?" look. My friend had to tell her several times that I was a parent too because she couldn't hear the same words coming from my mouth. Everyone else over 10 or 11 was a parent. I don't know what she thought I was. Good thing I know 3 other moms there. One mom could hardly deal with it. People don't like difference. Her teenage daughter was more immediately accepting, handed me the regulation 5th grade ball so we could feel the weight (they are lighter than regular volleyballs).

Anyway, my friend says I show a lot of patience and she'd have a short fuse with these things. I appreciate that, because while I seethe sometimes, I must not show it as much as I feel it. Except to you, my readers, whom I worry think that I'm filled with bitterness at the world. Not really. But frequently irritated or slighted, yes.

It's always an adventure to go out into the world like this. You never know what will happen next. Some of my friends are catching on that the "little things" happen all the time.

Writing it out soothes the soul. Truly, it all went pretty smoothly since I've dealt with more.

Yesterday we ran into a former coworker of my husband's whom we had not seen in years. I could tell she was wondering what "happened," but it was sort of awkward to bring up that way so no one did, which was actually fine and good since I get tired of explaining. That was a nice change.

Sunday, September 14, 2008

The Difficult Questions

My daughter and I love spinach, and I've taken to sauteing it as one friend does, with a bit of garlic and green onion and olive oil until it's just wilted. But it cooks down fast--to almost nothing. There's your huge package of $2.50 package of leaf spinach in less than a cup. But you can buy twice as much in a can, already cooked, for less money. It doesn't taste as good, but there's more of it. Since it involves more processing, why the lower cost? We like that and asparagus, low calorie, yummy. She's trying a lot of new foods lately and seems to have similar tastebuds to me. She's got to be the only kid who takes California rolls in her little bento box to school--the other kids were fascinated and a few of them jealous.

The new scooter definitely handles grass and off-roads well, takes the relatively flat transitions from pavement to grass easily. While I wouldn't go mudding in it, it holds up pretty well. And I'm not finding the larger turning radius is a problem--lots of practice has made me much more adept at getting in and out of places that are accessible. Narrow hallways can be an issue in older buildings. One store I was in today was much easier to navigate than when I tried with the first scooter when I was new to it, the end of January or early February. The only issue still is that it doesn't stop as fast--when I take my hand off the control completely, it takes a second or two to stop. Don't walk in front of these, people! It's fun, by the way, to go in stores where baby strollers aren't allowed.

It was good to be out.

Saturday, September 13, 2008

Rheumatology Update

Long appointment, long discussion, lots of information both directions. The rheumatologist is running updates of labs since some values may not appear until a few years and others need updates. I was prescribed a different NSAID that doesn't have to be taken often, so maybe that will reduce stomach problems. It doesn't seem to work very well though. I like ibuprofen, I just don't like the severe stomach pain.

He's looking at Remicade rather than Enbrel since it requires fewer injections (slows to once every 6 weeks rather than every 2 weeks). That might be better for the immune system.

In contrast to the Eastern medicine doctor, who says he would guarantee it's not an immune issue, the rheumatologist thinks I have an immune system problem and inflammatory problem that is creating the arthritis. The labs should give some information. He's still thinking spondylitis but wrote down more general categories for inflammatory arthritis that would include most anything. When googling for arthritis info, I ran across a paper he has written on differential diagnosis of many types of arthritis, giving exceptions, atypical presentations, and very unusual types of arthritis, so he definitely knows what he's doing. The jury's still out on exact causes for me. I can deal with shifting or general categories--I just want the pain under control. I'm no longer having the worst pain in the morning nor is my pain improving with movement. In any case, maybe we can get this under control.

I also started glucosamine since the clinical trials say it's as effective as NSAIDs after a few months' use.

Pool = good for me. Better than land, though I have to be careful not to overdo since I don't feel the pain then, but will later.

Tuesday, September 9, 2008

Good coincidences

I did call around about the letter; it was accidentally mailed to me by medical records. Knowing my own medical conditions and remembering the sequence of events that morning, I was able to figure out enough to know that the hospital staff rather than the surgeon broke protocol--I emailed the committee to let them know the specifics. I also emailed this to the surgeon since his letter indicated he wasn't aware that he was definitely not responsible. My husband was able to confirm my memories. I don't understand everything about this yet, but the fact that the letter was first directed my way was of benefit to another person.

Last night I had to stand in the middle of our bedroom to get any pain relief at all while waiting for another dose of medicine to kick in a little. I tried to doze standing up. Standing up started to hurt but not as bad as lying down. I can't think straight. The rheumatologist's office just called to say they have an opening and can get me in tomorrow rather than Friday. "Small" blessings count and an office staff person who remembers counts for a lot.

Monday, September 8, 2008

Confusion Without Context

A staff member accidentally mailed a response from one of my doctors to the quality assurance committee at the hospital to me. I wasn't aware there was an issue. While, as the doctor pointed out on the letter, my outcome was fine, I feel a little decentered by this since there's not enough information in the letter for me to understand what happened. I feel weird about asking since I'm fairly certain this original was mailed to me by accident rather than to the committee. That's a little disempowering. I also like the office staff and mistakes happen so I don't want to get them in trouble by asking, if it actually was an accidental mailing rather than a completely inexplicable bcc without a context.

My husband had this letter at the bottom of his mail, so it's been here for a few weeks.

Wednesday, September 3, 2008

Last Resort

The acupuncturist tells me to meditate while I wait for the needles to work, to imagine my spine as a red dragon unfolding on water. Wherever there is tension, I'm supposed to allow it to unwind and let the water hold the dragon up. My dragon's heart chakra weighs him down and he starts to sink. He's sad, he can't let go. Truly, in my mind, I can't get him to stay afloat. He needs an assistive device. I give him a inflatable liferaft, just his size, to hold him up. It begins to sink too. I put wooden beams into the water, sinking them into the silt below, to hold up the liferaft. He settles there, he'll stay. But he needs those supports. You can see where he won't lie quite flat, there's that tendency of the heart to pull him down again.

My pain has increased and I have difficulty getting out of the house at all. Not just my spine, but my knee, my hand, my heel, my hip hurt, and with the extreme level of inflammation comes a high level of fatigue. As a last resort, in an attempt to avoid taking Enbrel since I'm prone to resistant pneumonia, I've gone to a different chiropractor, one who is also a licensed acupuncturist and herbalist, who knows energy techniques, and who was a practicing orthopedist in China. He practices Western medicine in the East and Eastern medicine in the West. He knows when to refer people to traditional doctors. I tell him about my surgery; "yes, that was a necessity," he says. I relax. I don't have to defend here, as I do with my former chiropractor. Since I am limited in time, money, and energy, I do seek multiple modalities at the same time when I can get them, especially when insurance will cover, as it does here. I know gentle chiropractic will help, but acupuncture, say the clinical trials, is not helpful with spondylitis, though I'm still not entirely convinced that's what it is. (Alternate diagnosis: denial.) It is clear I have sacroiliitis, a definite inflammation of the SI joint that is characteristic of spondylitis but which can occur for other reasons. Am I just an atypical case? A lot of women are atypical cases. He thinks it's probably it's not AS either. But he does think there are both arthritic and biomechanical changes. When people ask me what's wrong with me, I hardly know how to answer, not only because of the negative and loaded phrasing of the question, but I don't know for sure what all the causes of my pain are, and there are multiple and interrelated causes. Everyone has their opinions, as do I.

He asks me when I started using the scooter. "January," I say, "but I truly needed it last September and tried to get one then." He writes down "September." He hands me herbs to take. This I'm not sure about. There's a long list of ingredients on the side, many of them familiar, but I can't research all of them. I imagine the rheumatologist asking next week, as he always does, if I'm taking any different medicines or supplements. "Yes, but I'm not really sure what," I imagine saying. Shouldn't I keep the same skeptic's mind as I do with Enbrel? I'm told to avoid cold food, cold drinks, cold air, that my kidneys have slowed down and my qi is affected. Since I spent the night cuddled with an ice pack, I'm not surprised he can pick up on my frozen dragon spine.

What I do know about Enbrel is that it works and works well for about half of patients with spondylitis and other forms of arthritis. According to the clinical trials, patients did no better after 6 months on a placebo than they did before; in some ways they fared worse. And since spondylitis is progressive, they might have fared much worse in a few years. But for patients put on Enbrel, there was a signficant decline in pain and disability, to about a third of the previous levels. Nevertheless, Enbrel raises the risk of cancers, of multiple sclerosis, of blood disorders many times over. Interestingly, for both groups of patients, the doctors assigned the patients the same scores the patients assigned themselves for level of health, disability, pain.

The woman I know who takes Enbrel is hardly a poster child for it. Last spring she raved about her arthritis drugs, so I thought I'd get a pep talk from her. Now she has blood, kidney, and stomach problems and surgery for some of these. She is on a liquid diet. She is in crisis. Still, such side effects are rare. However, I do have small children and a propensity for upper respiratory infections already, and Enbrel is an immunosuppressant. I know someone who died from pneumonia last spring. My husband's lost his voice with an early fall respiratory infection he caught from my daughter. I had pneumonia for well over a month last winter. I don't like having to make decisions like this. I can live with a fair amount of pain. I don't expect to be pain free. But I don't like the idea of a toxic drug. I do like the idea of being able to be out in the world more.

On the way out, someone parks in the wheelchair access aisle. It's a loading zone, he informs me. There's a sign saying so, he says. It looks just like every other access aisle next to a ramp. He leaves, and I see there is no sign. He's lied. Maybe I should be more forgiving. A sense of entitlement is so difficult to recover from.

And, and, and. One of the spine doctors told me that the needles for testing nerve function are like acupuncture needles. Said by someone who's probably never seen an acupuncture needle but who's used to working with large gauge needles to inject thick steroids into spinal spaces. There's still a difference. Acupuncture doesn't even hurt. Those needles aren't tiny.

Update: in-laws did not go on cruise, going tomorrow. Wish they'd told us last night, but anyhoo.

Tuesday, September 2, 2008

On Pain

Inspired by Elizabeth's upcoming radio show on pain and a difficult day yesterday, here's a pain control technique I wish doctors would try.

In Pam England's Birthing from Within book and childbirth classes, she has patients practice pain control by holding or putting their hands in ice. If it doesn't sound painful, try it. The first few seconds, it's just cold, but as you hold the ice longer (not enough to cause frost damage!), the cold intensifies and turns into pain. You want to put it down, but you can't because it's not time yet. So your mind tries to adjust itself, looking for an out. When it realizes there is no out, that your hand's going to stubbornly hold that ice, you quickly develop coping techniques for it. If you hold that the length of a contraction, a minute or even up to a minute and a half, your hand just hurts. After you put that ice down, the pain gradually begins to fade away but doesn't disappear immediately. You begin to look forward to putting the ice down, for those breaks between "contractions" and with a Zen mind begin to realize the temporary nature of the pain and to either sink into it or focus on other senses.

Imagine picking up that ice yourself for a minute. Or better yet, do so, unless you have circulation/skin problems. It feels good to put the ice down.

But with most intense acute or chronic pain, you can't put the "ice" down. As pain patients, we'd like to put the ice down at any time and relax into that blissful fading of pain. You have to hold the ice longer--try 3 minutes even. The longer you hold the ice, the more difficult it is to control the pain with mental power, though you begin to adjust. But you don't have that break between contractions and there is no baby to look forward to at the end, and you don't know if the pain will end or how long it will take to diminish. If you've had acute pain frequently, you develop some trust that it will fade, that eventually you'll feel better. In the meantime, though, your life goes on hold.

If you do too much one day, or perhaps without doing anything out of the ordinary at all, you can't brush your teeth, get dressed, compel your body to move. So you postpone going to the bathroom because you're going to have to carry a 20-pound bag of ice with you. It's strapped to your neck and back and settles in your low spine and hip. Some of it melts and shifts, migrating down your back, down one leg. It's in your shoulder and knee, and impedes movement as well as creates pain. You have your wheels, but getting to them or transferring is painful too. You can't sit down on the toilet, so though female, you stand to pee. You can't make it out of the house. People wonder where you are. They think you have problems. You do have problems. But they've never carried more than a 5-pound bag of ice with them. They think they understand since they've carried around 5-pounds of pain packed in their lower back or around their knee or on their head for a while, but they can't.

Update: in-laws have had a lot of rain from the outer bands of Hanna in Jamaica but are doing well. And going on a cruise later today.

Update to update: Tell me the in-laws aren't on a boat in the middle of the hurricane. Somehow I know that they are unless the boat company cancelled because they're just that optimistic. Someone's got to worry around here.

Monday, September 1, 2008

Looks Like Rain

Looks like the in-laws are getting some heavy rain from Hanna in Jamaica. Gah, I'll try not to stay up and worry, though I'm sure I will some. It's just Category 1, thank goodness, but it will still be a memorable anniversary present, I'm sure. They're not worriers themselves and stay weirdly unruffled even during tornado outbreaks right over us. Everyone we know along the Gulf Coast, including western Florida (tornado) is okay, thank goodness.

I am surprised how much better emergency response is this time around (last time: oh, evacuees need food and water?), though I know things are very difficult for a lot of folks.

Yeah, I worry about people, all right? :) It's the mom in me.