Thursday, July 31, 2008

More on Modesty

First, I'd like to bring readers' attention to two physicians' blogs. The first, Bioethics Discussion, is by Maurice Bernstein, whose questions go well beyond end-of-life issues to the everyday interactions that can affect patients. Recently he's continued a conversation on patient modesty. The other is a blog on patient modesty by a recent commenter here, Joel Sherman (read through the comments for the full discussion on each issue).

While I love the disability blogging community (so many of you have given me more than you realize in the past year), I worry sometimes that our issues as people with disabilities or with chronic health issues aren't getting out there enough, that we're talking amongst ourselves too much (which also holds true for the majority of medical blogs I've looked at, which seem to lack any patient perspective). I'd like to see more dialogue between doctors and patients about the issues that concern us. I am hopeful that there will be more changes in medical practices, more patient-centered rather than authoritarian care, but I think such change is most likely to occur when such physicians who listen to patients teach their colleagues and students what they've learned, modeling more empathic care.

Something I've heard from others, which thus may or may not be true, is that Americans are considered overly modest and when in Europe, there's no gown or blanket. That's treating someone like a medical book specimen rather than a person, further objectifying the body and strongly reinforcing that doctors rather than patients control bodies, health, and knowledge. It says that patients are powerless, that the body lying on the table is just that, a body, a body removed from "its" everyday contexts and life and subjected to the will of someone else. A body that doesn't have a say in what's done to it or control over its own functions or choices. What I'd like to ask doctors to do, whether the issue is patient modesty in the exam room, the filming of a medical procedure, or the treatment of a person who is sedated, is remember that body has a family, a life, a spirit, a memory that extends beyond that single point in time.

The body is never just a body, and science is never just science. What is science without humanity?

There are additional privacy or modesty issues I've come across that I think are in no way unusual, but rather representative of what most patients experience at one time or another:
-A physiologist at the surgery center who would not close the door when I was changing (my husband and I both told him to leave, after telling him not to come in yet when he knocked). He came in again when I still was not done. That is not just rude, it's unthinkable.
-Doctors dictating medical records in hallways or other areas where information can be overheard. You can't assume people don't hear or understand. And I have run across many, many people I know at doctors' offices, which sometimes really unnerves me. When I was young, my orthopedist posted all the x-rays on long light tables in the very long hallway right outside the exam room and dictated the records there too. Hearing your record dictated makes you feel like a physical object, reduced to parts.
-Doctors leaving doors open for all of their patients for quick follow-ups because they're in a hurry. That means I'm less likely to ask questions I need to and feel more intimidated about being judged by additional people.
-Offices with walls too thin. Twice I've heard way too much of very personal exams, once while in the waiting room because an exam room was right on the other side, once while waiting on the doctor. One of the patients was someone I knew, and I was horrified to overhear. In general, I can overhear loud conversations I would rather not, even while trying to concentrate on my reading.
-Having to traipse through long hallways after changing for x-rays. While my current doctors use radiology services where this is not a problem, when I was a kid and a teenager I had to sit in almost nothing (paper) outside the x-ray lab for a long, long time.
-Lack of patient privacy where medical procedures and tests are done and you're herded like cattle and branded with your bracelet, etc. for efficiency and your records and medical situation are discussed openly. Again, why is it always assumed no patients know each other?
-Being asked as I walk through a public area whether you could be pregnant, and worse, what my method of birth control is. This happens all the time.
-Having to deal with an x-ray tech who was an apparent pedophile and an MRI tech who touched me inappropriately. Parents, consider yourself warned.
-Gowns that don't cover or tie adequately, or that patients can't reach to fasten themselves. Not keeping patients draped adequately. I want every semblance of modesty at all points, even if we know it's just an illusion.
-Unfastening or pulling anything up or down without warning me first.
-Medical staff who gossip. Don't think we don't notice. Even if it's not about us, it's not right. Don't gossip to me about other patients.
-Refusing to allow someone to have a person present because of "modesty issues." That's about your modesty, not mine. There are people I feel comfortable with (said person) and people I don't (unknown doctor).
and last but not least,
-Objectifying patients and their bodies, neglecting to obtain consent, being abusive in any way even when you think you can get away with it, or failure to report these.

Lest I sound prudish, I'm not. But I want control over what happens to my body. I want the right to say no. Patients deserve as much bodily autonomy and respect as possible. To psychoanalyze myself (always dangerous), I had very little choice about anything that was done to my body or in any medical decisions when I was young, and I see this happen to other children. They, too, deserve respect. I recognize there are situations when much patient modesty is not possible, such as when a nurse was helping my husband with bathing me postsurgery (that time I didn't pass out and learned some helpful tricks). It was awkward and embarrassing but I was glad for the assistance. However, when it is possible, more privacy is what I prefer.

Yardsticks and More on Stores and Access

I went into Eddie Bauer recently and was able to navigate very easily. The dressing room was also the most accessible that I've ever been in. Though generally more pricey, the $8 jeans on sale for my getting-tall daughter couldn't be beat. I complimented one of the managers on how easy the store was to navigate. Though it isn't large, they didn't pack it with merchandise. The manager said every single morning she takes a tape measure and makes sure there is at least 36 inches of space between every rack, which ADA says is required for navigability. And said she'd pass that information on to some of the other clerks, who were always asking her why she was so exact about it. I did tell her I couldn't shop in a lot of stores. So praise where it's deserved is important--when places are accessible, plesae thank the owner or manager and let them know how it helps. Though not as frequent as we'd like it to be, there are people who think about us! Unfortunately, people with disabilities often don't venture into accessible stores, figuring that each is probably as inaccessible at the last.

ADA only applies the 36 inches to fixed racks, though, not moveable racks, and the law has been interpreted as all merchandise does not have to be accessible; a customer can ask the stores to pull merchandise of a certain type for them. That doesn't always work out so well, plus the clerk (or even your mom or husband) won't know your tastes. So Eddie Bauer (or at least this particular store) is exceeding ADA standards. Personally, I'd rather shop at stores where I can get around when I can. I'm one of those people who would rather have fewer clothing items (and those I really like) than a lot of merchandise from a store that claims to be accessible and is not (JCPenney), despite their buy 1 item, get 1 for $1 sale. Actually, I'd rather they be accessible, too.

Thanks to Yanub's links, I came across Patricia Bauer's posting about Mervyn's, which is being required to make all merchandise available to customers with disabilities. This case went through the California courts, so I am wondering how this will play out with other stores that exist in California, such as JCPenney and Kohl's. So it looks like ADA may begin to be interpreted more broadly? Great news!

Wednesday, July 30, 2008

Comedy of Errors and Identity Crisis

Last week I had the tilt-a-whirl test. Because I had been wrongly instructed to go to the main admissions desk and no one there would listen to my objections that I was having an outpatient procedure (this was in the computer record), I was checked into the hospital. I refused to sign the blanket consent form that you agree to any medical procedures the hospital wishes to perform and wrote that I wanted informed consent for anything (in an emergency, I would waive this right). I was told that I could not sign just part of the form and the admissions person wrote "patient refused to sign." There was no option for informed consent under reasonable conditions. I haven't seen a blanket consent form before, but that's scary! On the same form, there was a blanket consent that you agreed your records could be used for any medical studies that you "couldn't" refuse to sign (my guess is they'd use your records if they wanted to anyway or refuse to treat you/admit you if you refused). I asked for the ethics committee phone number.

Instead, perhaps as punishment, I was asked if I wanted a private or semiprivate room. I said I wasn't supposed to be assigned to a room, but was there for an outpatient procedure. The admissions person said okay, and then took me to private room 216 even after I again clarified which test I was to have and that I was not staying overnight. I'm not even sure which department I was taken to (the department for noncompliant patients who ask questions, probably) I continued to insist I was in the wrong place, but no one listened. People kept asking where my husband was and said that he needed to take my "valuables" (I doubt anyone would bother to steal my plain gold wedding band). I refused to change into a gown as instructed and phoned my husband for assistance. Fortunately the RN in charge of the test didn't assume I was a "no show" and went looking for me, wheelchair in tow since it's a long way across the hospital. The admissions desk told her I had not arrived when she called them repeatedly. I had brought my own scooter, thank goodness.

Suddenly I can see how big medical mistakes happen. Damn, when a very lucid patient tells people what procedure they're having done and that they're not supposed to be there overnight but more like an hour and *no one will listen* then there is something really wrong with the medical system. I only escaped with the help of the RN in charge.

The test was relatively uneventful except for the RN, who really did enjoy being in charge, not having enough respect for my modesty. I felt unnerved at points, I'd rather not say why. After the electrophysiologist arrived, we determined we knew each other from being in the same university honors program at the same time. Cool to see that other people have done something really useful with themselves other than developed medical conditions. Blood pressure drop, extreme nausea and wooziness with the nitroglycerin right at the end of the test. I found out firsthand why you're not supposed to eat 6 hours in advance, and it doesn't have anything to do with the test results. Any cookies would have been hurled. The conclusion is confirmed that I don't have a cardiac/autonomic problem causing the passing out and near passing out, but that it's from pain, though pain medicine will also lower my blood pressure. So I'm supposed to control my pain as much as possible without pain medicine, which means padded walls or the use of the scooter. The cardiologist stopped by since he runs cardiac caths on Tuesdays and reiterated what the electrophysiologist said. He turned bright red for God knows what reason, I hope it wasn't anything with the RN and her weirdness and hope she me adequately covered, though strapped in so as not to fall if passed out, I couldn't really do much anyway. News alert to medical professionals: just because you've seen everything doesn't mean it's not an issue to us who would never purposefully put ourselves on exhibition.

So I was approved for my trip to a higher altitude and headed the next day to Pike's Peak and Rocky Mountain National Park, dragging my body behind me like a tired out child. My children, in contrast, never whine on hikes anymore because not only are their legs longer than they used to be, but their limits are no longer pressed thanks to mom. Wheelchair accessible trails are really bumpy so I've opted for walking and regretting it the next day. Unnerving to people when they see you fishing from the scooter earlier in the day and hiking a trail later on. I had blood pressure problems in Florissant and the vision in my left eye was as blurry as when I have my eyes dilated. My husband, who knows nothing about medical issues, asked why that would be anything to be concerned about. "Stroke," I said, while contemplating how far away the nearest ER was and how I'd subject myself to hell for nothing, but while waiting for the lightning storm to clear, my vision and BP got better and we went hiking.

My husband offered to buy me a salt lick from the local ranching supply store since I can only drink so much Gatorade when I'd like to leave the house for a while and I consume outrageous amounts of salt.

Now that I need to order the better scooter for better ergonomics in the next few days, I'm having an identity crisis about it, pulling out all the stereotypes I know people have about these things. My sister says I've always worried too much about what other people think. I told her she's one to talk. I feel like I look awful, slobby, goofy, ridiculous. (And what if I do?) As much as I've looked forward to better seating and less pain, suddenly I am panicky and quailing about it. I asked my husband what if I end up not needing it or needing it much after spending that much money. He said that would be great. The insurance company on our last call said yes, they received all the documentation, no they wouldn't approve it or give a reason for the lack of approval, but we could sue them if we liked. They actually said that. We can do better than that and call HR and let them know why they shouldn't choose Pain in the Ass Insurance Co. again. But no, I don't have the energy or resources for a lawsuit that would cost us more money than the equipment. That's why they get away with this kind of thing, and they know it.

But back to my identity crisis. No, I don't show judgment about anyone else using equipment that they need. But I hate myself for it. It's not something I can explain or understand. I don't know what's into me. At the beginning of each day, I can get along pretty well, do a little housework and get dressed, walk some, but at the end, I've had difficulty with the single step onto my sister's porch.

This week: stomach virus. It's very difficult to keep BP up with that, am not feeling well.

Saturday, July 19, 2008

Nonaccess and a Lot of Assumptions

Ever wonder why people in wheelchairs or scooters aren't in clothing stores other than the outer aisles? Yes, that's right folks, ADA does not require adequate space between clothing racks, and often there are only about 20 inches, meaning only the smallest of scooters and wheelchairs will fit and average ones will not. Thus even brand new department stores don't allow enough space and stick those cute wheelchair stickers on their front doors, as if people can actually shop. And they stick benches underneath the wheelchair access button so you can't actually reach it from a wheelchair or scooter. I couldn't make this stuff up if I tried.

Twice I've been yelled at--no, taunted is more accurate--in my scooter for not turning my body around to look at someone when they're talking to me, once by someone with a disability. I physically can't do this, but rather than recognize the impossibility of movement, people choose to make assumptions and take it as an act of rudeness or personal affront. When I stand up, I can turn my whole body to face someone, but I can't turn my torso and can't turn my head over my shoulder, though I can look sideways, unless I have too much neck spasm that day. Twist backwards, though, no. That takes a lot of physical ability. I've also had people say hello to me from behind or start discussions and not realize I often can't know who it is. It's odd to me I have to point this out. Much more appreciated are the people who call my name if needed and then come into my line of view to greet me. I'm grateful for that kind of awareness. Why do people assume someone in a scooter is physically able to any particular degree? This applies to other functional limitations, too, such as the ability to reach or carry or open.

Often I see a lack of awareness from other people with disabilities, which appalls me. Even if the level of disability is far less, surely there's got to be some judgment free awareness of physical limitation? (More than just not parking on the access aisles...). It's not wheelchair versus scooter, canes versus wheels and a matter of who has more difficulty getting around. People shouldn't take advantage of others with disabilities (dashing in front of someone in checkout, refusing to hold the door for someone else when it's possible, impeding someone else's path, taking the van accessible parking space when the regular space would do for your compact car).

Along these lines, I came across a short essay written by a doctor who uses a Segway to get around. I had thought about the practicality of this a few years ago, when walking was sometimes very difficult but standing in one place could be okay for a while. They do have some very practical applications for people with disabilities and temporary impairments, especially in places that are inaccessible to wheels users, such as clothing stores. You can maneuver more tightly and see what's ahead (something I, as a tall person, miss doing). This particular doctor, Peter Poullos, experienced a spinal cord injury. He had trouble getting around in his wheelchair in Europe (hello, cobblestones). After seeing other people on Segways, he tried one out and found it meets more of his needs. But even when self-identifying his disability, he gets questioned and bullyied for using it. Even now that he's added the universal wheelchair symbol to the front, the bullying hasn't stopped. One group of teenagers tried to knock him off of it to see if it really would balance.

The reaction he receives when he confronts people is the same reaction I sometimes receive when defending myself: "how was I supposed to know?"

You can know, by observing.

Figured out the dog's new issue...

There's a cat that's been hanging out in the backyard and clinging to the windowscreens.

Friday, July 18, 2008

In that prodromal sort of way

Last night we were in Wally World and spent half the amount on school supplies than the cost of the prepackaged supplies offered by the school. Since the extra money benefits the supply company and is no longer a fundraiser, I wasn't about to pay more money, even though Wally World is the evil empire. But, who, I ask you, who can pass up 50 cent composition notebooks, 22 glue, 88 cent markers. Those of us higher cost of living and medical bills, that's who. I have such self resentment about chain stores. What I'd forgotten about the store is how high Wally World piles everything compared to other stores. I wouldn't have been able to reach much of anything by myself in the scooter, though I can reach much of what I need at other stores. Plus there were towering sets of unpacked and unstable looking boxes in the middle of some aisles that weren't well stacked. A little scary.

Near the end of the trip both legs went numb in that prodromal sort of way. I thought, "as a matter of fact, I am in pain," and said, "Hubby?" and tipped him off so he knew to watch. We got through the checkout okay, but who knew he could throw items on the checkout station so fast? I hate it when people park their grocery carts an inch from my back. I am a person, not a cart, for God's sake. Or when people walk that close behind me since I have to slow down and nearly stop for bumps and that could injure everyone. Couldn't unwind and go to sleep until 2:00 because of pain. Woke up this morning peeing blood and sick. Go to internist? No. I didn't want to listen to the "think positive, you're doing this to yourself" lecture (which, yes, he's done at times like this). Only when I'm out of antibiotics will I go in. Unfortunately, I only have 2 Levaquin rather than the 3 probably needed. I have 1 Avelox and a bunch of 2-year old Macrodantin on hand that I should probably get a new script for (how long does this stuff last?). I'm not trying to do my part to develop antibiotic resistance. I don't think he realizes how much I typically avoid coming in, not just now, but especially now that he's apparently going so Louise Hay loopy.

Guilt's what I feel when I get sick or have to go to the doctor again. Shame is what I feel about having to use the scooter around those who don't approve.

Wednesday, July 16, 2008

The Dog Has Come Unglued...

...poor guy. I'm not sure what to do for him, but he's been quaking in fear about going outside and will only do so a few times a day despite shaking from holding his pee. He'll reach the back door, we'll open it, and he'll flee back to the back of the house again. I don't know if someone yelled at him or if it's because sections of the fence have come down twice during storms or because of someone setting off firecrackers on our porch. He's scared of birds and the neighbor's wind chimes and any neighborhood construction will set him off his feed, but there's nothing unusual right now. But he is *terrified* despite being a huge dog that one might normally expect to be protective of us. But Anxiety Dog hides in the closet most of the day every day. I promise everyone's been nice around here, though when the kids got angry with each other once, he started shaking again. Doggy Prozac? No Underdog around here (my son always cracks up when I misquote the movie cartoon, "Never fear, Underwear is here!").

My husband mentioned the possibility of a second dog since Mr. Shaky needs a friend (he likes other animals) and we need more doggy companionship than we've been getting, so three seconds later I was on the computer looking at the dogs available through rescue organizations and local shelters. Mr. Shaky was a lot braver when we had another dog in the house. The last dog was scared of the dark. I found one border collie I like a lot. Not sure. More animals=more difficult to sell the house, which is inevitable, I think, despite the market. We'll hope for the best. No puppies, too much work. An older dog with a good personality who's settled down would be great.

Monday, July 14, 2008

Hi, My Name Is Frida...

...and I pass out from pain.

The subspecialist (or uberspecialist?) concurs with the cardiologist. I pass out from uncontrolled, high pain. My heart rate soars and then my blood pressure drops even if I don't pass out. Nothing's wrong with my heart, thank goodness, no defect or anything that requires further adventures in extreme medical procedures. It just beats way too fast from pain. Very relieved to know nothing else is going on. It's all the same old spine and bone issues.

I'm going back on the atenolol since my heartrate was lower on it and I feel more myself on it. To get my blood pressure up, I have to eat more salt and drink much more water. Gatorade in heat or high altitude. I've been craving salt, and hubby will have to stop taking the salt shaker out of my hand in a panic about how much I've been consuming (straight from the shaker).

Controlling the pain is probably not a bad idea, though that's difficult to do without pain meds (liver enzymes high). Heat, ice, rest, pacing myself, scooter.

In the meantime (and I'm not lecturing any readers here, don't worry), I don't want to hear anything from anyone about how much more I need to be doing and how I just need to have a better attitude (or do yoga or try more). Apparently I'm able to handle an extreme of pain physically/mentally while there are undeniable physiological effects. My response to people, I think, will be an innocent, "oh, do you ever pass out from the pain, too?" when people start doling out the advice. And since chiropractic apparently did work for me a great deal--my sister confirms that my spine was a big scary S-shape on the x-rays--I'll start whispering, "Chiropractic...chiropractic..." at advice givers.

Seriously, I don't usually give people medical advice, though I will let them know if I've had a similar problem so they can ask questions if they like. And often they do. That's how I've found out about remedies and techniques that will work for me, by asking questions of people who have been there and listening to what they have to say. By asking questions of them and getting them to share their stories, I've learned a great deal. With these friends, no one tells me how I "should" do things, but I've often given alternatives a try and been interested to know what works, what practitioners are good and who are not, etc. I appreciate far more questions from people, such as "have you tried chiropractic?" to which I can answer "yes," to people who start on a rant about certain chiropractic techniques to the already converted.

Thursday, July 10, 2008

Guilt and Parenting

It very much bothers me when I can tell someone is sad or hurt and I don't know why or can't do anything about it. Sometimes I can intuit why and then address it, but other times I can't and blame myself and feel bad I can't help.

My son often works to hide his emotions, and I'm not sure why. Maybe school and peer socialization already? Tears will be streaming from his eyes, and he will wipe them away with his hands, but he will just say that his eyes are bothering him or irritated and he doesn't know why. Usually I know what's up and can help, but it's painful when I can't. My daughter, too, will not verbally admit her emotions, though I can often interpret them anyway, such as what's to me obvious fear rather than the insomnia she claims. Or that the real reason she wants to take Mama's blanket to camp (despite my husband's protests since I was using it all the time postsurgery) is that it's Mama's, not that there aren't other blankets that have similar textures and weights (I let her take it; I had withdrawal, but was glad she had it).

I often feel like such a terrible parent because I can't do as much for or with my kids as other people. At times I've wondered if they'd be better off with someone else as a caregiver, especially when they were very small. Or honestly, with my husband alone and me somewhere else since my pain is a drag. I'm not being melodramatic; children are often taken away from parents with disabilities whether or not neglect occurs. My pediatrician was highly upset that we hadn't brought our son to her at all in a year and a half, but I was too post-anesthesia stupid to let her know my husband's taken him to a much closer physician 8 or more times in that time period because he can't take 3 1/2 hours to take him to her office. Closer drive, less wait, convenient hours for my husband, almost physically impossible for me to go most of those times (most of it pre-scooter and high pain). I have wondered if my not carrying my son around and instead holding him and playing with him in one place somehow contributed to his autism. He was very inactive even in utero compared to my daughter, when I was still very active while pregnant.

I can't do most of the physical acts that show love for them, though some tasks I can handle other ways, such as ordering clothes for them, planning birthday parties from the couch, talking with them. Somehow they love me anyway, though I don't feel I deserve that at all. My husband, forgetting my son doesn't get jokes (people with autism are very literal) made a clearly (to me) lighthearted joke about my health, and my son's "eye irritation" started up again, and I had to reassure him no one was going to trade me in for a newer and better mommy. It's clear he still needs me around. There's no question to anyone that he loves me most, but that's odd since I don't do anything, at least not anything much.

The guilt does not go away. I'm screwing my kids up. I didn't know it would be like this, or I'm not sure I'd have had children. I did feel somewhat better recently when my daughter said how much it matters to her that I can tell what's she's feeling and respond to it without her having to say anything, that I can know without her telling, and she said to her that's more important than me being able to do many of the physical tasks that her friends' mothers do for their children. Nevertheless, I don't like not doing more. It's not good role modeling. I still need to do better somehow, maybe set small goals. So many times I stay here because it's too painful to get out with the rest of the family or with the kids and their friends. They are only young once, and not for much longer.

Tuesday, July 8, 2008

Smile, Nod, and Ignore

Human Resources at VBW asked me to sign a waiver so they could obtain all my medical records. I don't think so...

Monday, July 7, 2008

Tech help?

Psst, does anyone know how to narrow the margins so there's more text on the screen while using the same template and whether that would affect accessibility? The HTML looks complicated...

Karma or Quack?

Oh, I've given myself bad karma and a bad spondylitis flare. Now why couldn't my neighbors experience karma that would keep them from setting our doormat and front door on fire with a firecracker on July 4? (It went out right away, but I don't need that kind of drama in my life.)

Anyway, here's a news report on the Cancer study that shows cancer patients die at the same rate whether or not they demonstrate a positive emotional state:

In a book review of Anne Harrington's The Cure Within: A History of Mind-Body Medicine, Jerome Groopman (How Doctors Think) details how the body may indeed become ill from stress. The problem, apparently, is that people believe the opposite is also true, that because A-->B, ~A-->~B. That's faulty logic. Harrington says that doctors are unwilling to recognize that such measures as support groups don't reduce mortality and save lives. It isn't that support groups and organizations and spiritual practices aren't helpful. Navigating and experiencing the health care system and dealing with a new diagnosis can be extraordinarily difficult. Having others' support can make all the difference. People's inner well being is as important as their physical health.

In addition to the belief that A-->B, so ~A-->~B, there are very obviously questionable conclusions made in many research studies. Most often this takes the form of asking patients who have a particular illness to rate themselves on various measures of psychological state and disability. What's actually found and what could be fairly concluded from these studies is that people who are more ill rate their psychological health as worse than people who are less ill. That should not be any kind of surprise to anyone. But this is not the typical researcher's conclusion. Most of these studies conflate psychological state and disability at a single point in time, so that it's concluded that people who are less ill are less ill because of their positive thinking; it's the familiar causation and correlation error. In making conclusions not supported by the evidence, doctors sound dangerously like the Andrew Weils and Louise Hays that many of them would refute.

The placebo effect and conditions aggravated by stress, such as migraine or irritable bowel syndrome, indicate that there is a mind-body connection of some sort. But some moderation is needed, with an appreciation for the complexity rather than simplicity of the connection. We cannot wall ourselves in to remove all our stresses. There are many treatments, but few real cures offered by contemporary medicine. As people in the breast cancer community say, you never know if you're cured unless you die of something else. It is apparent that many conditions and illnesses cannot simply be willed away.

Again, this isn't to say I don't try. I, for one, tried to figure out fifth chakra issues as I prepared for surgery; I wasn't able to conclude anything in particular. I am smart enough to know it's better before surgery to pray for my doctors' guidance and abilities than for my own health. I don't believe in praying for better health; I am blessed and that would be a selfish request. To those who say they pray for me, I would like to say, pray for my ability to handle it and to help others. Why should any God spend any effort on my healing, but not give food to the hungry senior man in the diner who's only ordered a cup of coffee and pleads with his eyes, and who, though he gets one meal, clearly misses others? Nothing works as we would like; pray and be healed, think positively and be cured. If only it were so easy to try harder, run faster, do more. But I do know this. Physicians, alternative practitioners, and patients have got to stop dismissing each other and start listening. None of us has all the answers. And it's not enough to just "think positive."

Sunday, July 6, 2008

That’s It! It’s Sexism!

I’ve been doing a lot of thinking about the mind-body connection in health, starting from some interesting comments from Elizabeth about how a cancer study showed that people do just as well when they have a bad attitude, exclude themselves, etc., so I’ve done some internet digging and other reading.

In a recent article, Peggy Orenstein says that we want to believe that stress causes illness, and that she has had to deal with “intimations that stress, or some other-self inflicted wrong thinking could be the source” of her breast cancer and infertility problems, and that we believe the “corollary…that we’re also responsible for our own misfortunes.” In fact, she says, most ovarian and breast cancer survivors attribute their survival rates to positive attitude, with fewer than 5% of the breast cancer patients citing medical treatment as curative or partly responsible for survival.

Can that really be true, that positive attitude (along with complementary therapies, no doubt) cures, while medical treatment really isn’t necessary? Or do people operating in the realm of uninvestigated beliefs and biases believe that medical treatment won’t work if someone has a “bad attitude,” doesn’t pray enough, or should have feng shui-ed the house? In the cult of breast cancer, women are told that they’ve taken on too much, had too many responsibilities, had their heart chakra psychically wounded, any of which is theoretically possible. As someone who uses complementary therapies, I don’t knock these ideas entirely. But it’s unintelligent to assign most of the manifestation or recurrence of illness to personality and social factors. All kinds of factors can influence the development of breast cancer, including family history (those BRCA1, BRCA2, and ATM genes can be powerful predictors of breast cancer), environmental factors, diet, age at first menstruation, age of menopause, pregnancies, diet, and breastfeeding “status,” among a host of others.

While there’s some indication that the cancer survival rates may be the result of earlier detection rather than better therapies and surgical techniques, reducing stress alone or being “courageous” could not be the primary factor in the change in the survival rate. In fact, if this were true, then we’re back to the 1970s “blame the victim” for cancer mentality: if you die, it’s your fault, and you have cancer because you did something wrong. In addition, patients on placebo drugs or an older drug would perform much better in the clinical trials comparison to patients administered a newer therapy. And in terms of genetics, do women inherit their parents’ or grandparents’ problems?

Let’s look at breast cancer recurrences. According to a publication of MD Anderson Hospital, the 5-year survival rate for recurrences of breast cancer increased from 10% in the 1970s to 44% in the late 1990s. The 5-year survival rate for first-time breast cancers has been similarly dramatic. So according to the reasoning of the breast cancer cult, women in the 1990s and beyond are under much less stress, pray more, and have a more positive attitude than women in the 1970s. Given our 24/7 electronic culture that extends to our working and personal lives, and more overscheduled lives, and factors such as poverty and lack of access to medical care for many people, does anyone really think this is true? Could it be that breast cancer survivor patients have got their lives in order better than those who died?

The cult of breast cancer, it must be remembered, is specifically female. Many physicians have confirmatory bias in regards to gender, believing that their female patients are neurotic or stressed rather than ill, finding their beliefs “confirmed” by observations rather than questioning their assumptions. Thus women are less likely to be diagnosed with heart attacks and are sent home from the ER with an “anxiety attack” because symptoms of heart attack are different in women than men. Or the typical back pain patient is told that their back pain is from “stress” (physicians will almost never use the term “psychological”) rather than biomechanic, or that most people will have an acute episode of back pain in their lives, and that they will probably recover (and when they don't?--pull out the pop psychology). And patients themselves also exhibit confirmatory bias: they reduce their stress, go to PT, adopt yoga: ergo, they get better. Nevermind that they’d get better anyway without treatment for some conditions, or that the drugs, surgeries, changes in diet, and exercise, not a positive attitude, make the difference.

While on occasion men are blamed for inexplicable illness, as with Gulf War Syndrome, most often it is women who are told, by physicians, friends, and strangers, that we’d just get better if we were better people and lived our lives more purely. It’s primarily women who are the target audience for the “heal yourself” genre and my favorite, yoga and acupuncture. Thus we get nuts like Louise Hay telling us that people with muscular dystrophy believe “It’s not worth growing up” (nevermind that they all have different genetics from people without muscular dystrophy), people with multiple sclerosis, which affects more women than men, show “mental hardness, hard-heartedness, iron will, inflexibility. Fear” (not those that I know!) and those with a stiff neck show “unbending bullheadness” (and see, I already feel guilty, although sometimes I am not bullheaded enough, and that’s affected my life in major ways; above all else it’s important to me that the people I am around are happy). My neighbor believes that his multiple sclerosis was precipitated by a very stressful business situation in which his partner behaved unethically, and stress can have effects on the immune system. Nevertheless, stress is often unavoidable; in his case, it was unpredicted. That doesn’t mean the illness is his fault or that he can cure it by being positive, nor do many people seem to suggest that he should, in comparison to women I know with chronic illnesses.

We should learn to give credit where it is due and remove the blame from the body's malfunctioning. Early detection of illnesses and their early treatment with better pharmaceutical products, not sheer willpower, have reduced cancer mortality. Allopathic and complementary medicines have some major effects on illness and pain, and while a positive mindset might have some still undetermined effect on recovery, continuing to elevate breast cancer patients as heroes and continuing to honor the occasional person with quadriplegia who is able to walk again as someone who “didn’t let her disability stop her", as some kind of beauty pageant winner among unwilling and ugly ducklings, devalues those who do not recover fully. Confirmation bias leads us to believe that women in particular are disabled or ill or even die because of their bad attitudes rather than their health.

If positive attitude created cures, my colleague at work should not have died. She was always positive, happy, genuine. I'd say more, but I have to feng shui the house.

Thursday, July 3, 2008


Wow, resting pulse has been up to 158 on new medicine, BP 90/60. Pulse was 86 before new medicine. Called doctor. They said to take more new medicine. Because I would want my pulse to be even higher and my blood pressure to be even lower? Yes, great idea.

They said go to ER if it gets worse. How 'bout back on the old medicine, which I'm out of? Cheaper and more effective. Good grief. I want out of the house, not trying to keep my heart rate low!

My friend says that her doctor told her the only thing he can do for her pain is to take her out back and shoot her. When Dr. Needles made a couple of similar jokes with me several years ago, that was the last straw, though I never said anything about it. I just didn't go back and chose to deal with the pain on my own for a few more years. I remember saying during surgery prep, when they were sticking needles into me to check function, "I'd never let Dr. Needles stick needles into me!" Physical pain I'll deal with; abuse, no.


I saw a bald eagle yesterday. I thought it was a vulture until I saw its white head as it dove toward the lake from the trees where I normally see falcons or hawks. I'd heard one lived here, but the only time I've seen one before was at Yellowstone a few years ago, in a nest.

A few weeks ago I saw a couple of teenagers pulled over in the median near this spot, supervising a very large turtle as it crossed the road so it wouldn't get hit by traffic.

Still Proving Doctors Wrong

An epiphany just occurred to me while I was reading Elizabeth's blog on risk taking. Dr. Internist said if I began to use the scooter that I wouldn't walk, apparently based on his experience with patients who use wheels. Wrong! I do still walk. I use the scooter for distance and for long periods out, when pain would be absolutely unrelievable and/or leave me unable to function in the few days following. And with pain being less, I need to start taking small trips out walking more. If he believes in the mind-body connection, that's not good to say to people, though perhaps he was trying to use reverse psychology. He also wanted me to just ignore my knee pain. When I happened to mention that the cartilage is audibly grating with each turn of the wheel on my exercise bike and asked how I could position myself so that doesn't happen, the PT said there's damage and gave me exact instructions to prevent further damage during daily activities. That's worked. No more creaking. No big medical interventions needed, pretty easy solutions. Ignoring it didn't work. Asking for help did.

One of my retired friends is in terrible pain a few weeks post-surgery, a second fusion following a first failed back surgery. The doctor pretty much said to expect three months of hell and is dismissive of her concerns to the point that she says she feels abandoned. Okay, mind-body connection? I really tried to get her to go to Wunderkind and Empath in advance of the surgery, but it didn't work. I wish I could help her more than by just listening. That's the most frustrating part of pain and health issues, not being able to help others as much as I'd like.

Wednesday, July 2, 2008

Cardio Update and Disability and "Delusions"

In HappyNews (TM), my ticker seems to be healthy and work well, but just beats way too fast. Sinus tachycardia without very much in the way of arrhythmia right now. Resting heart rate late at night and overnight is actually 120-150 and seems exacerbated by pain; I've only measured 120, on heart medicine. So we're switching medicines and may add another in a few months since this isn't any fun and makes me feel ill. And I get the fun tilt table test to be on the safe side since blood pressure's still too low sometimes when my heart rate is high. Turns out there's not a Cardiologist #1 and Cardiologist #2, but a PA and a cardiologist, which makes more sense.

The cardiologist sent me promptly back over to Dr. Internist for papery-crackly lung, apparently pre-pneumonia. Different antibiotic. He thinks I can will myself out of illness; yeah, right. I truly don't like illness. Not even a little. Not at all. It would be gone, baby, in a (very fast) heartbeat if I could do it. My husband's still running fever and my daughter still coughing several weeks later, and no one talks to them about needing to cure themselves or try harder.

My friend once began to believe she would walk again. Several people told her she would, and she began to believe them, that her body could heal itself absolutely. She did not renew her apartment lease and signed a new lease for a second-floor inaccessible apartment (stairs, no elevator). She made plans for moving and for other major life changes. She told her close friends and family that she was going to be healed, asked us not to tell others because they would obviously mock and criticize, and she didn't need that. She ate a better diet than anyone I know (researched for her particular illness), practiced her PT and other exercises like clockwork, meditated and prayed all the time. She did not get better, she did not walk, and her condition actually continued to worsen. She was not healed and walking as she wished, but she has exceeded the lifespan for her illness by over a decade already. So her efforts probably helped, yes, but they cannot undo genetics.

Some of her friends told her she was delusional, not in touch with reality. I never did, nor did I think it. She had asked for my support, and she wanted to give willpower a try. How could I not extend my love and help? Like the townspeople in Lars and the Real Woman, there was no reason for me to argue with her thoughts and emotions. She was not mentally ill but held a belief that was statistically unlikely to manifest itself. But how could I not hope with her and grieve with her? She had to give up this hope, but how beautiful for a few short months that she held the hope and believed happily that she would be walking. In her dreams, she was walking again.

If I could will myself out of my current illness, I would. And I try. I kept trying that with the spondylitis. I'm still hesitant to name it rather than dismiss it. I don't want to believe it. If I don't name a problem, it doesn't exist, it's on the edges of my life. I don't like to name my many diagnoses. And what if the rheumatologist is wrong? When after mentioning the possibility to me a little more with each office visit since my initial reaction was dismissive, he said more directly the primary issue is spondylitis and gave me some pamphlets to look through, I just felt aghast and couldn't respond. If I do more, if I try harder, if I eat better, pray more, am a better person, I'll get well, I think, but it doesn't work. Until now. Some kind of remission of most of it. I'm grateful, but I don't understand. I wouldn't say my mind-body connection is "healthier" right now, except what's afforded to me in pain relief. Like my friend, I do keep trying. I don't like it that people think I don't. My doctor only sees me come into the office as a very limited slice of my life.

I love this lack of pain. It's like being released from a prison. I feel confused by it. It feels strange but wonderful.

When people speak to me of the "mind-body" connection or tell me I can heal myself, I hear: "It's your fault. You're not doing enough." This from people who don't live with me or see me frequently enough to know.

On the way back home today, I saw a man riding an electric wheelchair in traffic because there was no sidewalk for him from his apartment to major intersections. I couldn't help but say a prayer for his safety.

Tuesday, July 1, 2008

The Secret Garden and Other Secrets

If there's one book that I both loved and hated as a kid, it was The Secret Garden, which I read while recovering from being body casted and just before being diagnosed with moderate to severe scoliosis. According to the book, if only we were more cheery and determined, we, like that insufferable prat Colin (joking tone), could walk again. Colin has been determined by grown-ups to be doomed to being a "hunchback" just like dear old dad, a fate so unthinkable that Colin secludes himself from society long before the dreaded manifestation of this calamity, just in case. So certain are the adults that Colin will be "crippled" and "crippled" so much more than dad that no one bothers to teach him to walk, even though his father can. The message so far as I can tell--and I liked Burnett's other books--is that kids with disabilities are insufferable and have just been pandered to, while if they really tried more they can walk. I found the themes of this book truly embarrassing as I learned to walk again, and "knew" that people would see me as not fully human until that time. In the book, the failure to walk is a failure of character, and this is the prejudice, both internalized and often directly spoken to me, that I continue to deal with. Burnett makes sure we know the disabled body is unloveable. Wonderful when I had extreme kyphosis from loss of muscle control for months after being in the body cast--my mother called me hunched and a physical therapist chided me for being "ashamed" of being tall and of my body and for not sitting up straight, while I had a kid version of "WTF?" and thought, "I am sitting up straight!" (uh, no).

I became quietly hysterical when I was diagnosed with scoliosis not much later and was sent to the local children's hospital on a regular basis. Equally familiar with the story of Courtney and Janie, bodycasted for scoliosis in Just Like Always and Deenie in Deenie, I had visions of more procedures and bodycasting and people who thought my spine was crooked from uh, self entertaining. Fortunately for me, the discussions of surgery and bracing never manifested, and I was only given brutal exercises, forced to lie on the floor for a half hour after I got home, subjected to more than my share of radiation, not allowed to go to sleepovers or use a sleeping bag (even though lying on the floor was good for me), and embarrassed by having to keep an extra set of books at school and not carrying around my own.

Weirdly enough, the pronounced S-shaped curve that made me queasy when I looked at the film became a mild low back C-shape by my late twenties, I presume with the help of chiropractic, and sadistic Dr. Needles, the first physician I tried to see on my own for back problems, saw me as an exaggerator rather than someone who had severe scoliosis which had improved (I thought my back pain was due to scoliosis and a couple of bad car accidents). Ironically, I not long ago overheard one dad laugh at Dr. Wunderkind for suggesting chiropractic to improve his son's scoliosis; the walls are really thin and dad and Wunderkind loud about this. Yes, laugh, laugh at the world-class spine surgeon, because he could only be joking.

So society has evolved a little since The Secret Garden and Deenie, in which people are sure to laugh at you for needing a brace. Oh wait, they do still laugh at you. Anyway, at least we now have occasional tokenism in the place of real equality. The readers who know me personally will appreciate my comparison between a particular new painting at work and the brightly colored cultish paintings at the Denver International Airport. In the painting at work, there is a token woman in a nonworking wheelchair. Since the wheelchair has no front casters and no footrest, I guess it's an early Fred Flinstone wheelchair. Why not walk?

My pet peeve is tokenism to cover up discrimination, and people who think they get it and really don't.

I can't keep a garden, though I used to grow daffodils and other flowers, just like Mary and the prat Colin. I do still cultivate some secrets of my own. Usually I only make confessions under duress, on Versed. But here, Dear Readers, I will make some confessions to you. Grab an evening snack and pull your computer closer:
I'd like to bring House of God to doctors' offices and read it while waiting. If you haven't read it, it's a satire of physician training, over the top, but with some important elements of truth to it. Bringing it along would horrify all doctors except the one who recommended it as more reliable insight than How Doctors Think.

My sister tore all the leaves off the new tree and put them on top of the dog. She was also the one who broke the window. Neither of us colored on the closet door. I'm not talking.

Sometimes I wave at unrepentent starers, pretending to know them. Pretending to greet them in front of their friends, "Hi, how are you?" They look confused, then get a look of panic. I haven't pulled the "don't you recognize me?" card. Yet.

I've also been known to say, "Don't worry, it's not contagious." This, I've learned, upsets people because they don't like being called out. That's okay, people frequently accuse me of being drunk when it's painful and difficult to walk.

I tried to convince my children that buffalo have wings. You know, buffalo wings.

I'm not bitter. I'm just angry. I get over it quickly, until the next time.

My mother's still exaggerating my medical condition to other people, which still humiliates me. I don't think it's intentional. I think she doesn't fully understand or thinks people won't believe her if she doesn't exaggerate it.

When I was 11, a radiology tech in the hospital pulled up my gown and more. When I was 33, an MRI tech at a center I won't go to checked with his hand to see if I was wearing a bra and left his hand on my breast while telling me to think about my boyfriend during the procedure (huh?). While most people are professional and may be trusted, you can't know. I will say don't leave your kids alone with any stranger ever, not for a second.

When I was asked if I had ever been suicidal, I said no. No, that won't affect the way your health care providers treat you at all.

Sometimes at work I like to pull in front of the glass interior doors and see how long it takes someone who's passing by to come open it and how many people sit there in the lounge behind me not helping, as I face the doors. Then I feel guilty about secretly counting how many people walk by or sit there, though it's what I'd have to do anyway. People get angry or exasperated when you ask for help.

I worry about my son more than I let on.

I don't tell people before I meet them that I have a physical disability. They often rearrange their facial expressions in front of me, with a very stiff and plastered smile.

I like you, too. All of you.