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.