Monday, December 15, 2008

Herbal Information from NIH

The National Institute of Health has developed fact sheets on various herbs that summarize data from studies done on them:
http://nccam.nih.gov/health/herbsataglance.htm

You can also look for more information about various complementary and alternative therapies, including information on clinical trials that are enrolling participants, at:
http://nccam.nih.gov/
There's some good information on what works and what doesn't, and adverse effects/contraindications are also included.

Enjoy!

Calling It Like It Is

I say gallbladder attack. Right abdominal pain that cuts through to back, throwing up after I ate cheesecake with family last night followed by hours of pain. Periodic fever. Pain after I eat today. Hydrocodone to deal with abdominal pain. Recent weight loss, liver enzymes actually up again. They are more out of range now, says the rheumatologist. No, the ER did not check bloodwork or make recommendations for follow-up except with adjusting the heart medicine, though the doctor said my pain is where the gallbladder is.

The internist declines to see me since this is a "cardiac issue" (low bp). Mmkay. I have an appointment with the cardiologist next Monday.

In the meantime, I'm going to try milk thistle and maybe marshmallow, which some studies show help. It's the best I can do, and some information indicates the typical liver-gallbladder cleanse doesn't really work. I'd rather be well than right and hope to recover from this on my own right now and will do what I can. There's no reason acute inflammation might not calm down on its own at least for now.

Maybe the ER doctor must have thought I was faking it or exaggerating or something. I don't believe in overtesting or overtreatment, but when I think my gallbladder hurts, when you think my gallbladder hurts, when my liver enzymes are up, and it's been several days, let's not pretend there aren't horses somewhere, at least possibly.

Just because I use a scooter and have spine problems doesn't mean I might not have the same common ailment to every other mid-30s woman whose weight has yo-yoed. No, I don't want my gallbladder removed and I'd rather postpone if it is for personal reasons, if possible, at least for a few months. I'd rather be wrong and have all of this calm down soon.

I'd like to make a diagnosis too. Sexism.

Saturday, December 13, 2008

Understanding

My husband just saw the commercial for Mama Mia and said, "now I know why you want to see it."

Pierce Brosnan.

When you've known someone this many years, so few words are needed sometimes.

Everything's Fine

There are many possible "takes" or perspectives on this story--from accessibility issues to observations about the bureaucracy medical care providers must deal with to how someone flinches when you tell someone one of your medicines is hydrocodone. Medical narrative, patient narrative, requires more than a summary to acquire meaning. The meaning goes beyond the "facts."

But the reality of disability is this. I don't have the energy and creativity for the intellectual rigor I had in the past, for the creativity and insight and cutting observation about anything.

So here's the story.

Since Tuesday night I've had trouble maintaining an even remotely reasonable blood pressure even with Gatorade and salt; definitely I stopped the atenolol that lowers my heart rate. My blood pressure was 75/44 upon waking this morning and stayed that way; I'd had fever with right abdominal pain last night. My husband asked how much lower my blood pressure would have to go for me to do something.

Following a brief conversation on the phone with the internist, we went to the emergency room, despite my reluctance. I just felt dizzy and kind of out of it. Of course by the time we got there, my blood pressure was 140/125 (my diastolic has never been over 80!) and I got "lectured" (too strong a term) about not taking atenolol, thus missing the point. Gradually blood pressure went to normal and my heartrate back up to 110-120. The ER physician was able to get hold of some pending tests to make sure I didn't have gallstones (abdominal pain), my blood pressure cuff was compared to theirs (is fine), and I was soon sent home. Thank goodness; it makes me edgy to be there.

The ER physician said we may need to rebalance the heart medication or try a different one to keep both blood pressure up and heart rate down. So I'll follow up with the cardiologist, whom I thought I was done with (since I was at a real point of stasis, I could have the internist represcribe the beta blocker).

The wait was truly reasonable. I was immediately put in a room, to my surprise, and was in and out in three hours. Waits are legendary around here, so we must have had some luck. I've divided my atenolol in half as instructed since not taking it drives my heartrate up to unreasonable levels and taking it at all drives blood pressure down further.

I find the whole process more than a bit of an embarrassment but am glad it's nothing more. To me if someone needs the ER it's generally more obvious. Back home, my blood pressure returned to 75/44, pulse is at 110 with half an atenolol, and fever went back up. My abdomen feels weird again. I just don't feel right. I want to be doing other things, out and about this weekend.

Maybe I just don't have enough blood to the brain to help me be creative.

Weirdest statement: "is that your wheelchair?" Um, yes. They don't make them that way in the hospital. I guess it was a bit of cognitive dissonance to the nurse to have someone who looks young and in good health compared to a lot of their patients use one. She was nice, though.

It's a Wonderful Life is on television. It is a wonderful life. An angel just got his wings.

Good to be home, here, not dealing with additional issues.

P.S.: I just have this bit of advice. Be very careful not to dial your grandmother's number by accident just before leaving for the ER, especially if what she really wants to talk about are Christmas plans. No, I didn't tell her!

Tuesday, December 9, 2008

Bond, James Bond

We've been watching Pierce Brosnan, I mean James Bond, movies. Recovering safely from more spine injections (so I can surely reduce pain medications). That man is, oh, I would be so tempted to harass him. I had the opportunity to meet him with my job once except I couldn't because I was at the very end of my pregnancy. Sigh. Maybe I should have taken the risk and asked to be one of those to travel.

I'm still too brain fuzzy to follow the plot well, but it doesn't really matter. I get few celebrity crushes, but this has been a long lasting one.

The sedation experience was a bit like Wheelchair Dancer's--one second I was saying, "those are latex gloves!" and the next people are trying to give me something to drink in recovery.

Monday, December 8, 2008

Mr. Woodcock Redux

In a mind-defying twist of fate, I arrived at swim class today to find my equivalent of Mr. Woodcock, Carol, teaching. Carol is my PE nemesis, the teacher who made me walk on a clearly, very visibly broken leg, quite a long way, when I was in 5th grade. We live in a big urban area. She runs a dance academy full time. Never in a million years did I expect to have to exercise with Carol again. The young lifeguard, a teacher in training, probably wondered why I looked so uncharacteristically stressed out. Carol actually looked stressed out when I pulled up in the scooter. Her mouth opened and closed a few times like a fish. I was almost certain it was her, and she did confirm her name, several times.

She's actually still using the same music from over twenty years ago (such as the Flashdance theme song, among several others I used to hear in elementary school) and saying the same things ("don't stop moving!"). She's still doing some of the same warm-up moves. She must like them a lot. She praised one woman rather excessively for continuing to move despite having to modify some activities. Yes, I'd had to stop for a minute. Fuck off, Carol, you don't get severe pain or pre-syncope (I know when to stop). I don't know if she recognized me or not, but I certainly recognized her all these years later.

While I've seen her around our smaller town, I've successfully managed to evade her for a couple of decades for the most part.

Thank God she's just substituting because if she ever takes on one of the classes, I'm going to have to address this directly. No, I didn't Say Anything, but if she'd played "Eye of the Tiger," her favorite song to torture-inspire us by, I would have left. Maybe I should have started humming it.

The lyrics sum up her Spenserian classroom philosophy:
"It's the Eye of the Tiger
It's the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
Stalks his prey in the night
And he's watching us all
With the Eye of the Tiger...

For we kill with the skill to survive" ?!?

Let's just say I was the prey and not the tiger in her 5th grade microcosm of the world. Honestly, I didn't even understand the song at the time. There are other ways to teach PE; my children's teacher is very nice and encourages cooperation, and any competition is friendly.

She must teach another class, like aerobics, there on a different day. Last week when I was changing, I heard someone talking with another woman in the changing room about how most people don't have determination, don't attend regularly, don't push themselves enough, and criticize, criticize, criticize. My hackles were just up, more than they'd normally be, recognizing that most of the instructors adjust expectations when they're talking to students with limitations. I just didn't know why I was so irritated by this particular voice. Now I know.

Forget Flashdance. I've been having flashbacks. When she says, "Move! Move, move! Don't just stop," though I don't even know who she's talking to, I just feel mad because this is exactly what she did when I was in fifth grade. I feel like an abuse victim hearing their abuser pull out the same words again. Because Carol's the sort who, when someone stops moving, makes them move anyway, even on a broken leg!

Sunday, December 7, 2008

Take Some, Honey, Please...

When my husband shifts a little in bed and I shriek each time, or when he tries to roll over and I say, "how could you do this to me; what kind of person are you?" and it's 3 a.m., he brings the pain medicine and I give in. I've been trying to reduce the hydrocodone from 10.5 mg. a day. to about 5-7.5 so that I can be somewhat sedated for spine injections this week (narcotics interfere) and because my liver counts are still high. But that's not working so well.

Thanks to Sjogren's or something, I've been suddenly allergy free for the first time in my life after a weird allergic history to everything, so I'm now off Zyrtec. And off Daypro, verboten for injections, and Nexium since I only need it on Daypro. All of these medicines also metabolise through liver. And somehow my heart rate's also lower and I've been able to cut my heart medicine back.

A few of these medicines cause weight gain, and suddenly I've dropped 6 pounds in 8 days (yes!). I still don't know about the liver issues but am getting all kinds of blood tests I've never heard of and that the office staff had to get special codes for because they're not in the computer system. Anyway, I have more energy off these meds, and without all the little side effects, feel great, except for the pain.

It's bizarre to have the allergies disappear like that. I've really not changed anything significantly. But it's really great, let me tell you. I can even eat eggs.

Saturday, December 6, 2008

On Aggression

I had some personal feedback a while back that had me thinking and taking a break from writing for a bit, feedback that says my writing is too aggressive. This disconnect between my self perception and my writing persona gives me pause for a number of reasons. My philosophy is one of peaceful resistance, direct protest, and raising awareness, not antagonism or aggression.

It finally occurred to me that the most aggressive of my posts are the most popular--these are the posts a number of people with disabilities seem to identify with most. There is often humor mixed in with the aggressive words, but these posts do point out the need for change. But such posts are also the ones I feel most conflicted about and can feel embarrassed about later. To me this sense of embarrassment is telling and undercuts my insistence that real changes need to occur, that important civil rights are still under fire.

As with the Civil Rights movement in the 1960s or the feminist movement, I wonder how often we are considered "too strident" or "too aggressive," with disagreement, persistence, or insistence construed as asking too much. How much of this thinking that we're asking too much or not asking in the right way is meant to keep us in our place? Would we have access to public transport if people had not placed their wheelchairs in front of buses? Curb cuts and ramps if people had not continued to push and appeal, with some aggression? Is peaceful resistence and an insistence on one's rights aggressive?

I am direct but gentle and civil in asking questions about policies that might be changed or pointing out the need for changes--and can be patient for months while there is no response, simply reissuing the request and that I've received no reply. The reply back to me is often less than civil and sometimes even hostile, in response to gently worded requests. Merely asking is seen as an affront. I can be confrontational--but by that, I mean dealing with an issue directly, not shouting someone down. People who would infringe on our rights or space are not likely to be the sort to hear us, so I've learned to be cautious--a "please don't, that's not safe for either of us," but even that's received angry reactions. We are a vulnerable group. Sometimes I am unapologetically direct, without softening my words, but there's a place for that on occasion; not verbal violence, but again, directness. This defies gender norms as well.

What occurs to me is that someone's hostility towards us or our assertion of human rights or needs for access gets interpreted as our own aggression. I know how I'm perceived, I know how people stereotype, so I try to respond accordingly. Yes, I've been irritable before, but I know how that can cause people to be reactive in unconstructive ways. We often have to interact more with people than others do, because of barriers, because of inabilities, and the tense moments can thus add up. But someone's reaction to me--"sure, I'm glad to help," or even "I can't help, but let's see what we can do," or, "oops, I'm sorry"--is as important as what I say. Pointing out that I can't get past someone's car is an opportunity for someone to move the vehicle, not to harm me--no way would my phrasing be aggressive with someone who can mow me down, though I've still received aggressive responses.

Someone was saying to me yesterday that Obama sees the need for policy and social changes as a joint challenge, not a confrontation between groups. Why should we not do the same, seeing a request or a statement as an opportunity for positive change that benefits everyone?

Honestly, it hurts to point out the need for closer parking and to request it and to have someone snap back in every sentence with hate, to unknowingly direct a request to the wrong person and to be chided for it, to let a store clerk know that you can't get through and receive a verbal attack in front of other customers. Since our requests must be more frequent than others', more kindness would be appreciated.

Elizabeth recently had the police in her apartment for making a joke. Like her, I am not going to harm others--hitting someone in my scooter would harm me as well. Running over someone's foot--I've only run over my son's twice, fortunately not full on with the larger scooter, and it hurts--I wouldn't do it on purpose. I'm not going to harm other people, though I'm not going to stop insisisting on my rights, that motorcycles can't be parked on curb cuts or on sidewalks in ways that block access, that ramps can easily be added to some places of business. But more often I vote with my feet, not going in the furniture store that can't be navigated, not attending the church without an elevator, not going to the restaurant with inaccessible bathrooms. These people never know; I have limited resources and energy and must be selective.

But yes, here, in this safe place, there will be some aggressive words sometimes, though not directed at specific individuals. Yes, there is hurt and pain and frustration and tears and anger behind them, most of which I mask in public. Most abled people aren't going to get this, the impetus for aggressive posts or why people connect to them, but they're a start at awareness. If you're abled and they stick with you, perhaps they've done their job.

Wednesday, December 3, 2008

Opinions Wanted, Please

Have you ever considered getting a service dog for your disability? If not, why not? What do you think of them, how they're perceived, how they affect perceptions of us?

Part of me wonders if people would often react positively toward the dog and whether those feelings would transfer to recognizing needs or whether people would be less likely to perceive those needs. A part of me says this doesn't matter as much as the very practical help they can give with basic tasks, help that can save energy or reduce pain and injury from movements such as picking up objects or opening heavy doors while seated, nudging chairs out of the way or pulling footrests, doing a number of tasks that it's awkward or difficult to ask people to do--because, as my sister was saying, people expect others to be self sufficient, the Western pull-yourself-up-by-the-bootstraps and do-it-yourself attitude. This was one of the problems at work--there were many people who were willing to spare a moment to help with some quick small task, but others who were not--and help was not always available since people have meetings and other tasks.

For more on service dogs, see this post by Grace R. Young, occupational therapist: http://graceryoung.com/?p=51. I've been thinking, Grace.

Tuesday, December 2, 2008

Future Med Student or Should I Worry?

In the returned homework, with no comments.

ThirdGraderWrites

How to Cook a Turkey
Step 1: Catch a turkey.
Step 2: Cut it's head off.
Step 3: Take it's skin off.
Step 4: Take all the gross stuff out like the blood.
Step 5: Cook it about 30 or 45 minutes at 250F.
I vote for future med student: he's assured himself plenty of business by providing a good round of botulism and salmonella from a no-doubt pungent turkey.
I guess it does make me worry some, though he's averse to violence of any kind, even in movies.

Friday, November 28, 2008

What Do You Do After Thanksgiving?

For U.S. readers, anyway. We had planned to travel and be outdoors all day, but the weather's not good for that (scooters and predicted rain don't mix). We definitely don't hit the crowded stores the Friday after Thanksgiving, with or without the scooter. Too risky with my weak bones.

A number of years ago we started putting out the Christmas decorations on Thanksgiving weekend--I think we'll do that today, though we need to do some cleanup first. Much easier with our two recent splurges, Christmas CDs by Enya and Celtic Woman. And we often go to a movie or watch old movies on long weekends. Tomorrow we have a double birthday celebration with extended family.

My Labs Show a High Specialist Count

Who knew that there is a liver specialist? Well, there is, and I got a call from the rheumatologist this morning that he'd like me to go to one of those because my specialist count isn't high enough on my workups. My liver counts have been up since right before surgery--who knows, probably gallstones or elevated alkaline phosphatase from bone issues. The last go-round of this was when my daughter was a year old and I got everything ranging from full set of bone x-rays (whole body) to bone scan to every lab test known to man (or actually, woman). And we found--nothing. Except some increased bone uptake/stress fractures.

I think I'll ask the rheumatologist if he wants to sign me up for Medical Mystery because they generally have a good outcome and get to the bottom of things in thirty minutes.

I'm not really concerned right now, just annoyed, thinking sheesh, another costly round of elusive something-seems-to-be-wrong-but-isn't, but best to be sure I guess. I've already ridden this test-go-round ten years ago--my bone problems can lead to elevated results and it could be something as gallbladder. My doctor does not think my pain meds are high enough to cause problems, but I'm going to see about the pain management injections anyway so I can ease off the medicines and give my liver more of a break. I hope I was not too vehement with, "I don't drink!" because I really don't, though suddenly I would like a glass of wine with dinner now that I really shouldn't.

The other rheumatologist would have just ignored this. The other rheumatologist did just ignore this, come to think of it.

Thursday, November 13, 2008

Obama and Disability Issues

Obama made disability issues an important part of his platform; now we have the opportunity to advocate the importance of disability rights and health needs, to press their importance to the new administration.

To encourage this endeavor, Andrea from We Can Do has written to request emails to Obama about disability issues:

I'm trying to encourage more people with disabilities, our loved ones, colleagues, and other allies to write emails to Obama to increase the visibility of disability issues among his staff. Letters are wanted not only from across the United States but also from around the world. The following Call to Action explains more about how and why: http://wecando.wordpress.com/2008/11/07/disabilities-email-obama/

Please visit the website for more information on how you can help.

Saturday, November 8, 2008

Happy Birthday!


For Sunday:
Happy birthday to you,
Happy birthday to you,
Happy birthday dear NoSnoopy,
Happy birthday to you!

And to many, many more years of a beautiful friendship with you, may these fourteen be multiplied many times. You've always been there for me, through my triumphs and my mistakes and failures and my laughter and my tears, through experiences that I never thought would be mine. You've tolerated long conversations as I've tried to calm colicky babies, helped me as I waffle about big decisions and small ones, sympathized when I ended the fun at the cemetary by running back to the car, learned to sing the doggy muffin song, and even put up with me the year I forgot. I always have one person for sure on my side (as do you). Thank you. This is a friendship that is forever.

In recent news

My daughter was surprised that Obama won this year's election at school since Bush won the last one. So she polled all her friends and had them sign a list if they had supported either Obama or Clinton. The list surprised me--there are kids on there whose parents I would have thought aren't liberal, ones whom we'd avoided discussing certain issues with. With the ADA Restoration Act and this election, I'm excited about some of the possibilities.

But--news flash--texting, walking, and wheelchairs/scooters don't mix. Please look out for other people. Other families were also letting their boys play football behind my scooter last night at volleyball--dangerous to me and to other people. Both my husband and my father-in-law had to stand behind me to protect me. Plus it's really not appropriate there--it's distracting and disrespectful to all the girls playing (several games going on at the same time).

My brother-in-law has had a death in his family and will be here shortly to stay for a few days. One of our grandmothers was moved into assisted living--it's good to have her nearby rather than in another state. Our son's in withdrawal mode again, and my depression continues. I'd still like to move. This quitting work has been a mixed bag.

The kids, I can't keep up with them. They do some extracurriculars with school, thank goodness, but that means they're there even more hours. They each are very active in scouting. One's in a school service group, takes guitar and art after school, is on an art history academic team, is in choir, plays the violin, and plays volleyball. The other plays soccer, takes a building stuff class, and is one of the three from his grade on the spelling team. And I get lonely...I need real part time work, I think, but flexible in some way. I don't know. 60-70 hours a week, too much; 0, well, I am not I and don't even take care of the regular volunteer projects I should.

Am I depressed? Yes. Job loss (even self imposed) plus health issues can be depressing. I do think I should go back to my regular psychologist to figure this out.

Thursday, November 6, 2008

Clue, A Board Game for Abled People

Clue:
When someone in a wheelchair or a scooter sits in front of glass doors, angled perfectly, poised to enter, looking longingly in, don't walk around them, open the door, let youself in, and let the door close again. This. has. happened. twice. recently. My jaw dropped. I couldn't even respond.

Clue:
-When designing a hospital parking lot at a distance from the hospital, put in a disabled parking space or two or three or five if it's a really big lot.
-And put a ramp into the sidewalk, so the disabled person doesn't have to trot with the cars.
-And when you do put a ramp on one sidewalk, futher down, near the traffic circle, make sure that there's a ramp on the other end of the sidewalk so that the disabled person can get off the sidewalk rather than having to back up to where they started.
-And when you put another ramp in, past the traffic circle, don't have the second ramp end behind a bunch of cars parked against a wall so that the disabled person cannot pass.

Clue:
When you see a disabled person loading her scooter into her car all by herself, just like a big girl, sure offer help if you're worried she might need it. But for goodness' sake, she doesn't want to discuss her diagnosis with a complete stranger.

Clue:
Stop asking me if I have MS. Whether I have MS should not change your interactions with me. I'm the same person, and knowing what I "have" doesn't change your interactions with me. Next time, maybe I should say I have MS.

Clue:
When teaching seniors and those with disabilities, please remember we're not preschoolers. Let us retain some dignity, please. Please. (This for the Wednesday swim teacher, my goodness, she takes the cake. I'd not go if they were all like this. The others are not like this, not at all.)

Wednesday, November 5, 2008

You're So Pretty the Way You Are

I've been listening to my old Cranberries CD in the car, it's from--gasp, wait for it--the mid '90s. My daughter says, "Mom, this music is soooo weird." But it brings back memories of our first tiny, two-story house, listening to that music while typing upstairs at my desk, overlooking a giant cedar tree that harbored redbirds and doves, and the squirrel that would bounce along the fence to torment both birds and dogs. Hammering away at papers while listening to the Cranberries, Dead Can Dance, the Police. The internet was a brand new concept.

And the year before, Robert Altman also had a new concept. In his movie Prêt-à-Porter, fashion designers prepare madly for a new show in Paris, and newspaper and magazine editors perch eager for the season's trends. After the preparations, a hushed audience sits ready to receive the modeled clothing. Instead, a model walks across the stage nude. Another follows, and then another, to the music "Pretty," by the Cranberries. The final model to emerge wears a bridal veil and carries a bouquet. She is heavily and beautifully pregnant and also nude, probably in her third trimester: "You're so pretty, the way you are..."

The fashion "designer's" message: that beauty is inherent in the female body. Our beauty is not to be found in fashion. Of course Altman should have gone further and included women of a variety of body types, with racial diversity rather than tokenism, with disabilities as well. But the message to me as I listened to the Cranberries' song and thought about the film hit me hard. As I heard the opening chord, it hurt--because my body, it feels inadequate in so many ways. I want to change it, hide it, cover it. I'm in the therapy pool with the seniors. And the people my age and much older, swimming fast laps in the other pool, with beautiful bodies that move gracefully and with ease. But then I hear, "you're so pretty, the way that you are."

I see so many types of people when I go swim; they no longer move easily, their bodies bear signs of mastectomies, arthritis, osteoporosis. It is this that I want to share with each of you, and what I would like to share with them: "you're so pretty, the way that you are."

For now, I am disabled. Will I always be so? Maybe not. People ask me how long I will use the scooter, what my "plans" are. I know what I would like to do with my body. I'd like to be swimming fast laps, doing ballet, hiking difficult trails for miles at a time. And perhaps I will. But for now I am disabled, and I don't want to hide myself, change myself, to satisfy others' conceptions, to make them feel more comfortable. Because a scooter, sometimes slow or awkward movement, it makes people uncomfortable. And people think I'm just not trying enough. So I listen to that, I finally internalize that message, and think, yes, I can do this, I can open this kind of door. I'm lazy, fearful, and what was it the one woman said?--people can't get well until we're right in the head, that's why we don't get better. So I "right" myself in the head, being careful but pulling on my inner reserves. And instead I injure myself, predictably, despite my carefulness and my joy in movement, passing the limits I'm told I have and listening to the ones who tell me I don't have them. What I want to say is this:
"You got to say it if you want to,
But you won't change me."

The only clip I can find of this scene is dubbed in another language; skip to minute 6:00:
http://www.youtube.com/watch?v=mOczltYDR2U
Kim Bassinger is the reporter.

A clearer version of the song:
http://www.youtube.com/watch?v=f0Pp7v6HwXw

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.

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.

Sunday, August 31, 2008

Just So I Don't Drown

My husband's company subsidizes a gym membership at $15 a month, and though they have a pool, there are no pool classes offered. I definitely couldn't keep up with most water aerobics classes, which were extremely difficult for me even 3 years ago; I had to quit because I was never out of extreme pain. And a lot of the senior water classes would be too difficult for me, while PACE arthritis classes are too easy for me. Through the Spondylitis Foundation, I found out about the Arthritis Foundation, which does offer water classes for arthritis patients throughout the nation. And links back to our friends from many areas of our life, who teach Tai Chi classes across the area, including for the Arthritis Foundation. They're able to recommend classes/exercises that will work best for me. Once the weather cools off, I'll have to go to an indoor pool, and I wouldn't mind going to a class at least some. My body craves exercises but it hurts to do it so much that often I can't continue other than isometrics sitting down. And yes, I've considered Tai Chi, too, but maybe not when I hurt so much so that I can do some of it standing. I'd get more out of water exercise right now.

I can't tell much difference with the wheat free diet this time around, though I think it improves my health overall. Some people say completely starch free for spondylitis, and even dairy free too, but eliminating all starches (corn, spelt, rice, potatoes or sweet potatoes) is tricky to do without crashing your system. I have found that too much tomato does aggravate everything.

Saturday, August 30, 2008

Gustav = Unease

So Gustav is a Category 5 hurricane expected to hit somewhere between the Texas coast and Florida. New Orleans is being evacuated, no SuperDome or emergency services this time. FEMA says that the levees won't hold in New Orleans. My in-laws were leaving on a 40th-anniversary vacation in Jamaica tomorrow--Gustav's already past there, but Hannah may be over Florida when they return. I know a number of people who live in this zone and it leaves me worried again. One's a single mom with severe physical disability and a toddler. I don't have a good feeling about all of this and am worried about a repeat of three years ago.

Several friends and my sister's family survived Allison a few years ago and others had to evacuate with Rita. I darn well don't trust FEMA or any other government agency with disasters. When there is no warning and neighborhoods start to flood and people are on their roofs or sleeping in the attic, where are they? Not getting people out, they aren't, not anyone. FEMA's not going to put you up in a motel or even a shelter even if you have a toddler in a waste-filled, danger-filled house that would get CPS to take away said toddler in an everyday situation. They expect you and said toddler to live there, sans air conditioning, refrigeration, telephones, or other amenities in high heat, sleeping even if pregnant on low cots in mold-infested rooms with no working electricity, with no transportation because the car's been flooded while you and everyone else wait months and months to get your home repaired because everyone else is also waiting for their homes to get repaired. Money from insurance is slow to come, is inadequate to help with expenses, and other people can't help out because they're all busy with similar situations. My sister was home alone with her daughter when Allison hit. I listened on the phone with her as she wept in fear as water started filling her street and then filling her home while she prayed her husband could make it home and they could get out. There was no warning for them and no assistance. While there's some warning with Gustav, there is no organization, no decent oversight, no contingency plans when it comes to any natural disaster. Good luck, people.

Tuesday, August 26, 2008

Shhh! It's Not Really Fruit(TM)

Building on Dave Hingsburger's recipe day, we solicited our son's help in making menus this week and since he wasn't allowed to choose hamburgers every single meal, he chose smoothies one night and poppy seed chicken for last night. Into the yummy concoction goes:
2 cups mixed berries (fresh if available)
1/2 c. 2% milk
1 cup peaches
1 cup low fat yogurt
2 cups ice
1 banana
couple of tablespoons of honey (optional)

This is very simple to do. Send husband to store. Throw everything in blender. Turn on blender. Put the cover on first, of course.

For the anaphylaxis victim in the family (moi), my batch gets made first, minus the banana. Add sandwiches for the rest of the family. Asparagus and some rice for me, who's trying to go wheat free again since that seemed to help once, although it was probably coincidence/remission. Listen to sound of blender whirring in kitchen while lying on the couch.

Tell husband I'm eating on the couch, but go sit at the table, confusing both of us. Quiet dance of triumph for getting significant fruits into son. Repeat on a regular basis (snacks, add ice cream to his to fatten him up, whatever).

One batch will make about 2 servings. Use less ice if any fruit is frozen. Husband wonders how smoothies would taste with champagne added. Wife rolls eyes. I had forgotten my son really likes tater tot casserole--we'll have to try it again.

Sunday, August 24, 2008

I Can't Believe It's Not Humus

You say "hummus," my mom says, "humus..."

My son, whom we've earlier in his life convinced to try tomato things by saying, "it's like ketchup" and broccoli by comparing it to trees, says, "You can't tell me it's dip! I know it's hummus!"

He's narrowing his food choices again, and we're desperate to get a few more things into his stomach. He's not getting enough into him lately. Most foods don't get touched. He's gone from about 90%ile on weight to 60%ile over the past two years, meaning he's not gained weight in that time. And now he's eating even less...we're trying to be creative and also let him help pick meals from a list (part of the autism is that he can't generate lists/ideas on his own very well, so giving him some choices helps). It worries me, but we can't force him to eat. Not sure if we should be contacting a feeding expert or not--I know a lot of kids are very picky eaters. I'm not going to make him eat "leaves" (salad), but if only he'd get both more quantity and variety down.

We do go to the farmer's market and the specialty grocery, but he rarely shows any interest in any of the foods--I'll buy those he does show interest in. You can bet I bought the flax bread he wanted! He will eat bananas, apples, oranges, sweet potatoes, canned peaches, corn, carrots, broccoli, a few kinds of meat, chicken, fish, cheese, yogurt, and cereals, rice, plain bagels and waffles, but he won't eat most any fruits or vegetables other kids would like. He won't eat pasta. He usually won't snack. No beans, no nuts. No pineapples, no raisins, no other similarly sweet foods most kids like. Now he's dropping foods out of his diet that he's previously eaten, such as peanut butter and jelly, which was a good snack with some fat in it for him, and salsa, which gives some vegetables. No more applesauce, no more olives. He'll eat fresh peas or beans but not the pod, and most of those are out of season.

As much as I worry about this, he still eats far more than my niece, who is 5 years old and has gone from being ahead in her development in her first year or year to being severely delayed and stunted in her growth, with most skills on par with a 2 to 3 year old. She mostly gets Pediasure and whatever tablespoons of a couple of foods she will deign to eat. She's continually irritable, probably because she's not getting enough food. My sister's at wits' end with this. The pediatrician told her she didn't need the Pediasure, though she'd get no other protein source if she didn't.

Friday, August 22, 2008

No more static

Remember how I've complained about all the static electricity the old scooter generated? The friction from wheelchairs and scooters continually creates static on most any floor surfing, even tiles.

The new trusty Amigo comes with a thin flexible grounding wire underneath it that touches the ground (it moves so it doesn't snap off or anything) and continually destatics you; no more really nasty shocks. These people thought of everything!

Thursday, August 21, 2008

New scooter, new scooter!

We've been talking about new purse smells on Elizabeth's blog, so it was funny that the first thing my daughter commented on as the new scooter came out of the packaging is the new scooter smell (leather seat).

I can't believe how much more comfortable this is than the old one!!! I had forgotten just how much more comfortable. The padding on the other one is like a brick, very thin when you take the cushion out. The new one feels like a good office chair.

The powerseat means I can get my legs under tables and a footrest isn't mandated. The longer leg length is also slightly elevated for comfort. The handlebars are 4 inches shorter than the GoGo allowing me to get close to a table rather than having to lean uncomfortably in or dropping food on myself. Powerseat allows me to elevate enough to use kitchen sink, do dishes *comfortably* (!), can chop vegetables from it and handle other things if I want to. Plus as a better scooter driver now the turning radius isn't as much of an issue as I would have thought, though I know it will be in some businesses. Much bigger basket. Higher back, supports more of legs, though I'd like an extra inch. Can reposition the tiller myself, as opposed to other scooter. Even when the tiller is pulled in close to avoid neck/shoulder strain, I can still get my legs out! Handlebar situation far more comfortable and ergonomically placed.

Can roll over upturned rug without stopping the thing, bodes well for door thresholds. The antitip wheels swing up so there's more clearance if you're going over a bump instead of being stopped short.

Seat will stay freely rotating rather than locking into place at one of three positions so that I can't move back and forth easily.

Did I say comfort? Gotta run--with the new scooter.

I love you, Amigo people!

Wednesday, August 20, 2008

Tomorrow, tomorrow...

...a scooter tomorrow, it's only a day away...

Each morning this week, after getting up late after a pain-filled night: why the hell did I quit my job? I could keep pushing on.
Each evening this week: thank God I quit my job. The pain's unbearable.
My memory of pain is always so short. I can't remember the actual pain, only the location of the pain and how much it limited me at the time.

Had good luck with getting my son's school to accommodate for this year. Both kids have great teachers.

...scooter dreams.

Tuesday, August 19, 2008

Scooter Here Thursday

The scooter delivery people just called to ask if we'd be here tomorrow afternoon--it's the only time we won't be here all week! So said scooter will be here Thursday morning. Part of me wonders if I'd have been able to stick it out longer with work if I'd had the new scooter instead of the excruciating seating on the GoGo (alternate, excruciating walking)--it was supposed to be here around August 7. Another part of me wonders if I'd have quit if I realized my bad pain flare was from early pms, which didn't make me grouchy at all but which does increase my pain greatly. We'll see.

Monday, August 18, 2008

A Patient Patient?

The answers to last Monday's quiz are posted over at Donimo's excellent blog, Chronic Holiday. Go visit!

In the children's book The Little Engine That Could, which was my sister's favorite, only the little engine is willing to try to pull the heavy load up the mountain, willing himself up it. He thinks he can and therefore does. But what if he thought he could pull the train up the mountain but overestimated himself and had a terrible breakdown and could not be restored to his original state? Would it have been worth it after all, Little Engine?

What if that Little Engine broke an axle and lost a wheel and derailed, spilling dangerous chemicals into a local neighborhood, creating an "airborne toxic event" and necessitating an emergency evacuation like in Don DeLillo's White Noise? Would we be praising that Little Engine then, people? Or what if the Little Engine knew he could but that he'd be incapacitated the next week? Would all the other Little Engines pull out the medical advice? I never liked that book, Sam I Am. I did like Green Eggs and Ham.

I have to say my favorite children's book was The Little Red Caboose, which always came last. Though I guess right now it would have to be the big caboose. Now that I think of it, other favorites were The Wait for Me Kitten and Chicken Little. I got kind of caught up with the little drama queens. Though unrelated, I also liked the Where's the Baby? book in which a little girl looks everywhere for the baby, which turns out to be herself. She's the baby. That darn book fooled me every time. I'd have my mother read it over and over. Where's the baby? Ooohhh. Where's the baby? Ooohhh. Some foreshadowing seemed to be missing--why wouldn't we know she's the baby from the beginning of the book? I'd have her read it over, trying to see how it would work. My sister liked The Pokey Little Puppy.

How much does being a patient make you The Little Red Caboose? How much time do you spend being a patient? For me, for much of the past year, I spent an average of 10 hours a week away from my work and family in doctors' appointments, radiology, lab, physical therapy, procedures plus recovery time, and the commute time to these appointments. For the first time this past year I had to choose among and even turn down modalities that work. For the first time last year I wondered how I could get my work done. Sometimes I couldn't. Adding ten hours a week to a busy schedule is a lot for anyone, not to mention the additional pain or illness that created the need for the visit! Sometimes I still "think I can" and keep pushing on, at other times I unquestionably can't.

Lest I sound like I have Munchausen's (I really don't like medical attention, I'd really rather be left alone), that's not that much time during the diagnostic process. It's two PT appointments a week rather than the three recommended, plus an MRI or a follow-up for the MRI. It's the nerve testing one week, follow up with the rheumatologist the next. Or it's the PT plus a consultation with one of a couple of specialists for related problems, with the radiology or lab scheduled the next week since you have to work sometime. Or it's one of a couple of procedures under anesthesia plus recovery time that week and the next, no PT that week. Or it's your regular visits to the dentist, eye doctor, or regular doctor, carefully spaced out. Sometimes you tell the doctors you can't deal with appointments for another month or two and that you have to drop out of PT and keep it up at home, or that you can't do the recommended procedures now because you need a break. You hope that they don't drop you as a patient. You prioritize, let the smaller issues go, new ones crop up. You try to clear your schedule only to see it fill up again.

Being a patient really can be a full-time and expensive "job." There's extensive insurance paperwork for claims the insurance company still won't pay after you provide the documentation, the extensive time required to find, research, and shop for, and purchase medical equipment and find or purchase adaptive transportation. Often there are waiting lists to be seen by DME people. Realistically, sometimes you have to take shortcuts, postpone procedures, space out your appointments, cancel out with family to make room for these changes. Something's got to give (and it's not going to be my mind, baby!).

Pain diminishes my ability to get things done, even reading or sewing. I become unable to watch television. I plod on very slowly, trying to get things done, trying, trying. I think I can, I think I can. But at what cost? Sometimes I can't. Last week I couldn't. I had a flare of spondylitis pain and could not sit up more than a few hours at a time without excruciating pain. I couldn't endure an eight hour required training meeting last week. There was no way I could have sat up for that long. I was tired of fighting, tired of struggling, tired of feeling I didn't have enough time for my kids as I struggled all day to get small amounts of work done. So I quit.

After less pain this weekend, I began to second guess myself about this decision. I liked doing that work, loved it really. The pain kicked in again tonight and I realized how difficult it would be, though, nearly physically impossible at times, really. I make it to the top of the mountain, but it takes the life out of me. I'm sure when the pain level goes down again, I'll be back to wondering why I made such a decision. I get my work done and I do well at it, but it's increasingly physically difficult to go to work or to work long enough hours, especially with the medical appointments. Especially since I need to spend more time with family, spending hours out of the house with them. My children don't need to be trapped in because I've had to use my hours out for the day for work or a medical appointment. My husband takes them out, but he can't do it all. I am not doing well at explaining this right now because of pain.

Today I remembered in the children's story it's the tortoise who finishes the race first, not the hare. The one who keeps plodding on. I used to be the hare. I've looked at my old calendars, through my paperwork that evidences how much I could do. Now I try to keep going. There's probably other work that I could do, can do, more of it from home. We'll see.

Tuesday, August 12, 2008

Stop Me Before I Volunteer Again

I want this magnet (and a few others). See annetaintor.com for this and other merchandise. (1950s era advertising photograph of beautiful, smiling woman and a superimposed caption: "stop me before I volunteer again.")

Last night I had to leave before the nearly 3-hour PTA planning meeting was over (can't some of this be worked out in committee?) because the signs were getting stronger that if I didn't leave, I was heading toward passing out because of the severe pain of sitting that long. The new scooter is on order but not here yet, and the other scooter is painful, though the seating there is better than any chair at the school. After the meeting I sent out a couple of emails I needed to, including one to a friend I've known since my daughter was a toddler, if not a baby. She sent back a reply to the PTA question, but also asked if I'd be able to walk again or was still in recovery. I presume she meant from the surgery.

I clarified that I am able to walk for short distances, though I give out very quickly and sometimes I'm not able to get out for the next few days or can barely function if I do too much by putting myself in increased pain or risk passing out. I have to pace myself.

Both the question and my response make me feel odd. Since she's a friend, though not a very close one, I don't mind clarifying. I think people thought the surgery would cure everything, and really the surgery just touches on one area, not the most painful one. It does make me worry if people think I can't walk that seeing me walking around is going to lead to odd reactions. I guess it will. Using the scooter still makes me uncomfortable, and not just because of the seating. Sigh.

Speaking of perceptions and expectations, I saw a news story on the Olympics that says the girl who appeared to sing at the opening ceremonies was a lip syncher and that the seven-year-old who actually sang was pudgy and had crooked teeth. Why do people expect such physical perfection even from children, so that we can't accept their beautiful gifts? I haven't been able to watch the Olympics yet since our TV service has been out.

Monday, August 11, 2008

Visit Chronic Holiday...

...for a new Monday quiz on unusual advice given to me for back pain. Special bonus: my diagnoses! Can't wait to see how people vote.

Sunday, August 10, 2008

How People Arrive Here

A lot of people arrive at FridaWrites as regular readers or through links to other disability blogs or apparently use feeds. Don't worry, I keep people's information private. But I am interested in the search terms people who aren't regular readers have used.

I started wondering about my content when I noticed people arrive here looking for serious medical information. The information I provide on MRI attacks, while written in a humorous tone, definitely wouldn't lessen anyone's anxiety and might significantly increase it. Nor would what I write about scoliosis and bodycasts or catheters make people worry any less. Here are some of the terms:
panic attack in MRI
discovery channel medical mysteries headaches
bodycast scoliosis brace
one day I will wake up and realize I've made up everything -???
catheter torture (I hope this is an anxiety issue)
medical mystery
bad headaches when it rains
While the actual articles may be funny to regular readers (or me anyway), it's not going to be the kind of content people are looking for.

Others, though--wow, it's not that kind of blog. Sample google terms:
paramedics naked (we all know what post that linked to, exoricst head spin)
perfect P.E. teacher shoe (no comment)

A few are searching for more info on some music videos, such as the red V on Chris Martin's shirt in "Viva la Vida." Several are links to images of Frida Kahlo, including the profile and the PostSecret images.

And then there's the guy who keeps clicking back directly to the comments section on patient modesty wondering if I've responded to his rant yet. Yes, I have. That's why I'm using sitemeter.