Hey, it's another cool site. Bad Cripple by blogger William Peace. So far, I've spent most of my time on there reading up on his experiences with the Obama campaign and accessibility. It's making me want to go and fix up all my posts with pix (I'm certain I don't always provide alternate text). I'm looking forward to reading more by William and I encourage you to check out his excellent blog.
Where m "mood" and h is the constant for "health".
I found a very well phrased summary of why it's hard to have, make, or keep friends when you're dealing with an energy sucking illness. It's on Abide, a blog by sbpoet. Here's a small sample of her post.
And for the person who is ill, friends are seen in a new light. When energy is severely limited, one cannot afford relationships that exhaust and do not renew -- even if these relationships were enjoyable when energy was cheap.
Of course a poet would be able to turn this phrase so well. I remember back when my energy was cheap too. An image instantly springs to my mind of a teen standing in front of the refrigerator, door wide open, while he ponders - at length - whether he wants a glass of orange juice or lemonade. This was how I was with my energy before.
It's not an exact analogy though because one's own personal energy is not like power from the electric company. Carefully conserving it in my 20s, always having been sure to close the door to the fridge while I made the moment to moment daily equivalents of beverage decisions, would not have resulted in my having any more at my disposal now.
Still, I sometimes feel like I squandered what I had.
Thank you to Catherine at Women 4 hope who listed No Harm in her five new blogs for Blog Day which I missed hearing about entirely due to my complete self absorption at this time of year. Classes started last week - earlier every year it seems - and I start teaching this week. My blogging here has been slim while I've been prepping the course material. I'm really hoping to steer some of the students towards a health-psych project since it's a field which is gaining popularity, it's a new program in my department, and it is truly interesting. There's even been some high profile news stories in this general area, such as the report on the study of implicit bias effects in doctors' treatment recommendations for chest pain patients in the ER.
There's only so much you can cover in a short intro research course, which means most of the really interesting stuff is out. Still, the last time I taught it I had a group of young women who did a very nice project on students' attitudes towards mental illness and the effects of positive or negative portrayals of mental illness (and the mentally ill) in the media. Theirs was the best design and had some lovely, interpretable, and interesting results. It's always gratifying to see the students pull off something like that given the constraints of the course (which are considerable, believe me).
On the bright side, at least this year I was reminded in time to celebrate Talk Like a Pirate Day on September 19th (thanks to Bubblewench).
I noticed two recent hits on this blog from people looking for the same topic. I mean exactly the same. Both were referred from Google searches for what the lay person's term for diuretic is. Two different IP addresses even. How odd. I find myself wondering if someone referred to a diuretic in a House rerun or something.
Anyhow, since two hits count as a significant portion of the site's traffic, and since I'm a sucker for language, I'm giving my vote on this one. I'm going with "water pill". It's delightfully old fashioned, isn't it? Sort of like "the vapors".
Disclaimer - Nothing on this blog is meant to serve as or substitute for medical advice from a licensed health care provider. If you are sick, call a doctor. If you are very sick, call 911 (U.S.) or go to the closest ER.
Content - Medical and health care. Patient-provider relations is the most common theme. I am not a health care provider. I have no medical training. I am a person writing from a patient perspective, occasionally calling on my personal experiences working as nursing support staff, being raised by nurses, or married to an ER residency program for 3 years.
This is an anonymous blog because I do discuss my personal medical information and experiences which include topics like diarrhea predominant IBS and recto-vaginal endometriosis.
I'd prefer to keep the blog anonymous. Anonymous means it doesn't have my name or personally identifiable information on it. If you think you know who I am from my writing, please keep it to yourself just out of respect and courtesy, if not ethics and principles.
My tone - It's a problem, I know. I've chastized for being "negative", "jaundiced", and "angry". E.g., I got flamed by a woman on a Lyme patient list when I was trying to lighten someone else up with sarcasm. I wrote back to a guy who'd been suffering from a hard to treat case of Lyme due to a delayed diagnosis and whose coworkers kept saying stuff like "How come you're not better yet?" and "You're still sick?" The poor guy was at his wit's end and sounded pretty down. My reply was not about angels and virtual hugs but it was genuinely empathetic. What got me flamed was that it included something like this: "Hey you should wait until one of them gets sick. Then invite yourself over and jump up and down on their bed singing 'people who need people' out of tune at the top of your lungs" I hadn't realized we were all supposed to be perfect martyrs, suffering with beatific grace. I will point out that although I say my tone is "a problem", I'm not necessarily saying it's MY problem. I claim it as my cultural leaning. If it isn't yours, consider this a diversity experience.
Making contact - Comments are moderated. Trolls will be rejected.
If you feel you'd like to get in touch with me, you can try: nilnocete at g(nospace)mail dot com.
Please know though that I'm not interested in hearing about how I can be helped by magnet therapy, vitamin C overdosing, aura balancing, crystals, scrubbing with peelings from the inner skin of a nut found only on the south eastern side of Fiji, or whatever it is I'm supposed to be doing to put my mind-body vibes in harmony with the great cosmic whatnot to guarantee perfect health and good bowel movements. My dissatisfaction with medicine and health care is not because I believe western modern medicine can't work well. I just think that the people practicing it sometimes end up practicing it or being limited in their practice of it such that it won't.
I'm 36 years old.
My id for this blog is Hygeian.
Female, no pregnancies, no kids.
I married a doctor when I was very young.
We divorced when I was very young.
It was a more or less amicable split.
We split the house, but I did not seek alimony.
I am currently in a serious monogamous cohabitating relationship.
I was raised in a working class city just south of Boston.
Swearing is part of my vocabulary.
I am a feminist.
I believe attitudes can be changed but it's hard long work.
I am not religious and tend to dislike organized religions.
I believe personal spirituality and spiritualism are part of the normal, healthy human condition.
I am a survivor of long term childhood abuse.
It stopped when I became old enough and large enough to physically threaten my abusers.
I hate bullies.
I prefer direct discourse, even if it means a confrontation, to passive, indirect communication.
I am totally stupid about cats.
As an undergraduate, I majored in english with a concentration in linguistics, minored in anthropology with an interest in ancient classical history.
I graduated summa.
I love reading.
I started keeping a diary when I was 11 and have kept a journal ever since.
I was born into a family of nurses.
They tried to make me a nurse.
I hate sputum.
I worked in hospitals for 7 years as a unit clerk. It's how I paid for college.
I'm now a grad student studying how the human mind processes speech and language.
Someday, if my faculty don't lose patience with my health problems and cut all my funding, I hope to write my dissertation.
For now, I collect my data, make my measurements, and I try to be as well as possible.
This is not made easier by a growing dissatisfaction with the health care climate.
Here are the things I've had (or have):
Endometriosis - confirmed by laparoscopy in 2002, another lap in 2007 for worsening condition and indications it had invaded the uterosacral ligament. It had. Also, there was extensive endometriosis over the bowel and quite deep implants in the rectum. The short version? It sucked. I had an IUD placed during the surgery and we'll see how that goes. So far, it's cramps and lots of bleeding.
Chronic joint pain - this one you'll just have to take my word for. There is no diagnostic test for pain. Some days I hardly feel any. Some days, I can't walk. The smaller joints have been hurting since I had Lyme Disease in 2002. But the big hip pain didn't start until 2005 (I recall the exact moment in fact). I've seen two rheumatologists, two ortho surgeons, and have gone through two primary care (internal medicine) physicians since this started. The best I've got is some murky degeneration thing. Not straining it helps, but not straining it means sometimes preemptively limiting what I do. This is not well accommodated. My own attempts at self accommodation have introduced me to a whole new world of bullshit, about which I will likely blog.
Migraines - I had my first migraine in the hospital where I was working in 1992. I was on the surgical unit, sitting at the nurses' station, doing my clerical little things when I lost my peripheral vision. I now know the special fancy word for this, but at the time, the words I used for it were "f*ck, damn, what the hell?" They called my mom, the ER nurse manager at that hospital, to come take her half blind kid home for the day. No one said "migraine". My mom might have but I had long stopped listening to her proposed diagnoses. Regardless, I didn't know that's what it was until about 5 years later when I had a scintillating scotoma followed by a huge whomping headache and vomiting while I was married. "Yep, that's a migraine" my then husband said. For many years after this, I would have migraines now and then. Occasionally enough to only need moderate medication which would often expire or be recalled before I had used all of it. In 2005, I started having them more often. In the Fall of 2006, I had one which lasted a week and for several months had them so often I was cut off on my medication by my insurance company. I now take Elavil, 20 mg qd. This medication was prescribed at my recommendation and works quite well for me. I've had a few scary flickers now and then, and some headaches, but no classic, whomping migraines. Can I get a "woohoo!"? The only drawback is that now I have to list Amytriptyline on medical forms, which sucks because thus far I've successfully avoided being on anything like a psych med.
Lyme disease - in 2002, an undisputed diagnosis. The spinal tap, done two months after the rash appeared, was "borderline". At the time, I was told it "wasn't positive". We did two months of oral antibiotics (two because I was still quite unwell after one). An infectious disease doctor told me the tap was borderline when I developed neurological symptoms nearly a year later. I still don't know why the oral antibiotics didn't stop it from going neuro. Possibly it was a med problem, not quite non-compliance since I didn't have the info to comply to. See, I was really worried about getting a yeast infection from all that antibiotic. So I had yogurt or a smoothie (with yogurt) for breakfast every day during that time period. I had it with my doxy. You're not supposed to do that. I didn't know, and I shudder at how dumb this sounds now, but I didn't know you were not supposed to have dairy 2 hours before AND 2 hours after taking the pill. I'd get up, eat a little, have my doxy, then go straight for the coffee with cream and yogurt (I live for lactase - I love dairy even if it doesn't love me). But even if I stupidly (or ignorantly) screwed up with the dairy/doxy combo, the month of IV antbiotics a year later should have cleared it all up, right? It did stop the horrible headaches, eye pain, and pronounced cognitive deficits. It didn't stop the fatigue, the joint pain, the nearly constant low grade fevers, the red, hot, painful hands and feet...
Here are the things I might have:
An autoimmune disease - Since getting Lyme, I have not had a week where I feel 100% well. I have had many where I do feel very unwell. I find I am agnostic on the controversy. In my case - given an elevated ANA level and a family history of autoimmune disorders on both sides - I worry my symptoms are signs of an autoimmune disease. I had a primary care who was keeping an eye on this but she just left her practice to move to another state.
Hypoglycemia - As a kid, I had a lot of digestive problems. I remember having a lot of "stomach aches" and I was underweight. When I was about 12, my mother finally took me to a pediatric GI service in Boston. They diagnosed lactose intolerance (hey no wonder those shakes didn't help me gain weight!), GERD, and gastritis. I took Zantac and reglan. Who knew it wasn't so good for kids? At 15, I had a follow up endoscopy. Prior to the endoscopy, a nurse was starting the IV. It was a hard stick. A few minutes after, I told my mother I felt unwell. I woke up to see a room full of faces - doctors, nurses, whatnot, and someone said "you had a seizure." No. What I had was an episode of vasovagal syncope, induced by the IV nurse digging for gold in my arm and facilitated by my having been NPO for nearly 12 hours at that point, and I just happen to be one of those people who goes stiff and jerks a bit when she passes out. But no one considered that at the time. These "seizures" happened several more times during my adolescence - always when I had not eaten much in the 12 hours preceding the event. I pointed this out to the doctors back then. It seemed important to me but it was disregarded. I found out MUCH later that my aunt is hypoglycemic and, it seems, I am too. We can thank the nurses on one of my units for some not very controlled confirmation of the diagnosis and an ex boyfriend who was an insulin dependent diabetic for sticking me when I was cranky. I also had occasion to "vagal" in front of medical types later in life, and I was told "jeez, you're one of those people who goes stiff!" I pushed for explanation and was told that this can happen, doesn't mean it's a seizure. Considering how many frigging EEGs I had as a teen for this, I think it was pretty well established there was no seizure activity going on. From how the doctors I had as a teen treated me, I'd had no idea that sometimes this was a normal part of passing out, for some people. It's a good thing I refused those seizure meds.
IBS - By spring of 2004, my very bad GI problems started up again. By spring of 2005, I had gone from 145 lbs to 110 lbs. I ate plenty, believe me. The only thing that made it hard to eat was that within 20 minutes of eating, I would experience intestinal cramping, sometimes quite severe. Then the diarrhea would start. I was, however, quite hungry. I was accused of having an eating disorder by a nurse at my GI doctors office. Some of my liver function values came back high and I was sent for every stinking hepatitis test under the sun. I went on hyoscyamine to slow things down, and most days that plus some immodium could keep the pain under control and the food in long enough for me to digest it. By December 2006, I was starting to lose that control again. I was declared IBS-full because there was nothing else it could be (except perhaps that endo on my bowel) and given no ptions but to take more hyoscyamine or similar drugs. I wasn't convinced it was IBS, but I found mention of Elavil used to treat diarrhea predominant IBS and figured "if they're gonna call it IBS, let's treat it like IBS". The very nice part about the Elavil is it does double duty for the migraines. My primary care doctor happily (yes, happily, almost joyfully) prescribed it for me about 2 months before she left her practice here. I had to up the dose once (from 10mg to 20) but so far I've managed to keep my weight and not be in very bad pain after each meal - even if I am still a little dependent on being near a toilet.
