Waiting, waiting, waiting. Oh, suck.
Right now, I'm stuck in a holding pattern on my blood tests. My doctor, the fabulous Dr. H, decided to pull a lot of blood for a battery of blood tests she knows my rheumatologist is going to want anyhow, so she's ordered them at student health so I don't have to pay out of pocket. She ran a series of things checking for protien in urine, thyroid problems and muscle inflammation, but the most important is the lupus antibody series looking for anti-DNA, anti-SM and anti-RMP. That one takes several days to process, so I knew I wasn't going to get the results back until sometime this week.
The big problem, however, is that Dr. H. was going to be out of town after Tuesday, and I didn't catch her in time after she called me with the results, so I'm waiting until my appointment first thing next Tuesday to get the results that have been sitting in my patient file since Wednesday afternoon. I'm not a patient person by nature, and the anticipation is killing me.
Se gave me a call before she left to keep me updated: "I just wanted to let you know that the blood tests we ordered were mostly quite good, and I wanted to talk with you in person about the results." The last time she pulled that "mostly good" garbage was when all my tests came back clear except for the ANA. Well, damn. In addition to being a little impatient, I can be a little paranoid. In my mind, the one that isn't clear must be something in the lupus antibody series.
I ran by the student health clinic to check on the results Wednesday afternoon, and one of the nurses came back to check on me after consulting my chart. "Dr. H. said she left you a message, and to make an appointment for next week when she's back in," the nurse said. Then she sort of paused and gave me a funny look.
"Besides," she added cautiously, "... If it were me, I think I'd want to talk to somebody about my tests in person. Don't you?" My mind started racing. The paranoia, as far as my mind was concerned, had just been confirmed.
"Um... sure," I answered, and I made the appointment for the following Tuesday.
I only have two more days to wait, so here's hoping I can sit on my hands a little while longer... and they don't go numb on me again while I do...
Sunday, May 30, 2010
Wednesday, May 26, 2010
How to make your patients feel NOT reassured...
So, I was getting my next round of blood work last week, and here's how it went: I handed my superbill thingy to the lady behind the computer and she starts plugging in stuff into the database for insurance purposes and stuff. And then, while I'm waiting, she lets out a low whistle.
"Hey, Ken!" She yells back into the lab area.
"What?" The lab tech calls back.
"What's the billing code for a lupus antibody panel?" She asks, reading the name out slowly so everybody in the back of Student Health can hear. Ken comes out from the back.
"For a what?" He asks again. She repeats the name of the test series.
"The code for it? Hell, I ain't ever even heard of it," he says, scratching his head.
"I guess we're gonna have to look that one up. What would it be under?" They then begin a long conversation about what category of testing that would be considered.
The girl sitting next to me with her pee cup in hand gives me a strange look, and I suddenly want to crawl under my chair.
"Hey, Ken!" She yells back into the lab area.
"What?" The lab tech calls back.
"What's the billing code for a lupus antibody panel?" She asks, reading the name out slowly so everybody in the back of Student Health can hear. Ken comes out from the back.
"For a what?" He asks again. She repeats the name of the test series.
"The code for it? Hell, I ain't ever even heard of it," he says, scratching his head.
"I guess we're gonna have to look that one up. What would it be under?" They then begin a long conversation about what category of testing that would be considered.
The girl sitting next to me with her pee cup in hand gives me a strange look, and I suddenly want to crawl under my chair.
Monday, May 24, 2010
My Reconstructed Medical History, Part 2
So, here's my history as best as I can remember from 2006-present:
2006:
Pretty good year. Sinus problems get considerably better with move to Knoxville. Occasional joint pain, usually in wrists/backs of hands, etc. REALLY BAD IBS issues that summer when I visit Knoxville before moving. I think this is the same year I had a throw-up binge just before flying home from Christmas, probably from too much fatty foods over break. Oh, bleh.
I think I had more bruising but decided to ignore it.
2007:
In Feb., my left eyelid swells shut. Goes away over the weekend before I can show the doctor. It happens again (on the other eyelid), I think near the end of the same year.
Hand numbness back. Dr. M. sends me for a nerve conductivity study, which shows up nothing. Neurologist is pretty cool though, and she shows me some ways to alleviate symptoms.
IBS and sinus problems, sure, but they're more than manageable.
I think this was the year of my second lupus screening. Everything comes back negative.
2008:
In March, I try to do a 5.5 mile hike one way and just about die. (Well, I felt like I was.) Every time my heart rate got up a certain level, I'd get all weak and the world would black out. I was a little pile of jelly by mile three, and I made it to the top on sheer willpower, frequent breaks, and getting dragged up to the top. It was during Spring Break and I was in denial, so I did not tell my doctor, and I did not get an EKG. In all actuality, this was probably a second bout of pericarditis but I'll be damned if I was going to admit it.
Some light numbness in hands when the weather warms, but it's gone in a couple of weeks. Joint pain and sinus problems, but all manageable. I miss at least two days of work in the Writing Center a semester because I have throw-up fits.
I have another bad batch of random bruises, this time on my face. Happens twice this year, I think, once early on and once a week after finals are over.
Dr. M. does a second round of lupus screening since I've lived in Appalachia in December, I resent/protest considerably; these come back negative. I start to get really resentful of the "maybe it's lupus" response to my symptoms.
2009:
I start missing a lot of church because I feel to0 wiped by the time the weekend rolls around to get out of bed. Start falling into a bad nap routine, can't sleep at night, only want to sleep in the day.
I start having throw-up fits, severe pain in my side when eating, unending abdominal pain. Ultrasound shows nothing, but I have an abnormal liver screen and a very bad hida scan showing a non-functioning gall bladder (this is a hereditary problem in my family, though). They take my gall bladder out, eventually, in the summer, and suddenly food is no longer disgusting. Even though I can eat again, I keep losing weight like nobody's business.
I lose at least twenty-five pounds between about February to October, going from just under 160 to 132. I go from a size ten to a size two in pants.
Lots and lots and lots of canker sores. I lose count of the number of breakouts and it's hard not to drool when I eat.
I get severe stomach pain, cramping, nausea, and loss of appetite following the surgery. Abdominal scan, CT, endocscopy and colonoscopy, etc. all turn up normal even though I can't stand up straight. Eventually goes away on its own.
Random bruises break out again in the fall, big ones, which I try unsuccessfully to cover up with makeup and just end up looking like an abuse victim.
My sister, a nurse, swears up and down that I had a pull in my left eye over Christmas. That's the second neurological problem I've had with my sight.
2010:
All hell breaks loose again:
2006:
Pretty good year. Sinus problems get considerably better with move to Knoxville. Occasional joint pain, usually in wrists/backs of hands, etc. REALLY BAD IBS issues that summer when I visit Knoxville before moving. I think this is the same year I had a throw-up binge just before flying home from Christmas, probably from too much fatty foods over break. Oh, bleh.
I think I had more bruising but decided to ignore it.
2007:
In Feb., my left eyelid swells shut. Goes away over the weekend before I can show the doctor. It happens again (on the other eyelid), I think near the end of the same year.
Hand numbness back. Dr. M. sends me for a nerve conductivity study, which shows up nothing. Neurologist is pretty cool though, and she shows me some ways to alleviate symptoms.
IBS and sinus problems, sure, but they're more than manageable.
I think this was the year of my second lupus screening. Everything comes back negative.
2008:
In March, I try to do a 5.5 mile hike one way and just about die. (Well, I felt like I was.) Every time my heart rate got up a certain level, I'd get all weak and the world would black out. I was a little pile of jelly by mile three, and I made it to the top on sheer willpower, frequent breaks, and getting dragged up to the top. It was during Spring Break and I was in denial, so I did not tell my doctor, and I did not get an EKG. In all actuality, this was probably a second bout of pericarditis but I'll be damned if I was going to admit it.
Some light numbness in hands when the weather warms, but it's gone in a couple of weeks. Joint pain and sinus problems, but all manageable. I miss at least two days of work in the Writing Center a semester because I have throw-up fits.
I have another bad batch of random bruises, this time on my face. Happens twice this year, I think, once early on and once a week after finals are over.
Dr. M. does a second round of lupus screening since I've lived in Appalachia in December, I resent/protest considerably; these come back negative. I start to get really resentful of the "maybe it's lupus" response to my symptoms.
2009:
I start missing a lot of church because I feel to0 wiped by the time the weekend rolls around to get out of bed. Start falling into a bad nap routine, can't sleep at night, only want to sleep in the day.
I start having throw-up fits, severe pain in my side when eating, unending abdominal pain. Ultrasound shows nothing, but I have an abnormal liver screen and a very bad hida scan showing a non-functioning gall bladder (this is a hereditary problem in my family, though). They take my gall bladder out, eventually, in the summer, and suddenly food is no longer disgusting. Even though I can eat again, I keep losing weight like nobody's business.
I lose at least twenty-five pounds between about February to October, going from just under 160 to 132. I go from a size ten to a size two in pants.
Lots and lots and lots of canker sores. I lose count of the number of breakouts and it's hard not to drool when I eat.
I get severe stomach pain, cramping, nausea, and loss of appetite following the surgery. Abdominal scan, CT, endocscopy and colonoscopy, etc. all turn up normal even though I can't stand up straight. Eventually goes away on its own.
Random bruises break out again in the fall, big ones, which I try unsuccessfully to cover up with makeup and just end up looking like an abuse victim.
My sister, a nurse, swears up and down that I had a pull in my left eye over Christmas. That's the second neurological problem I've had with my sight.
2010:
All hell breaks loose again:
- It starts with an unbelievably bad breakout of canker sores throughout my mouth. It lasts I think up to two months. Even talking is difficult, and don't even ask about brushing my teeth.
- Big bruises on my chin and shoulder.
- In Jan/Feb, my scalp and the soles of my feet itch so bad I want to take a veggie peeler to them. I treat my feet for athlete's foot for weeks even though there's no signs of infection.
- In Feb., the absolute WORST bladder infection I have ever had, coinciding with the worst yeast infection I think I've had. I go to the emergency room on a Saturday night because I'm peeing urine the color of a Bloody Mary. First time they detected protein and cells in my urine, naturally.
- The Macrobid they give me doesn't do the job, so two weeks later I'm back at Student health with severe bladder/kidney infection symptoms. They give me the nasty stuff (Cipro) and that does the trick.
- I notice swelling in the backs of my hands for the first time.
- I keep having bladder/kidney/vaginal discomfort for a couple of weeks after that. I have to get treatment for the yeast infection twice, too.
- I turn in my field exam on March 1st, wake up to find I'm covered in a bumpy red rash on my head and neck. Spreads to most of my trunk by the next afternoon. Diagnosed with folliculitis.
- In April, the weather warms back up and I can't feel my fingers again. Only this time it's a lot worse:
--Fingers and toes, both hands, and it never goes away.
-- Nerve pain in hands, feet, forearms, shoulders, and (eventually) back and neck
--I get very, very clumsy, drop things, trip over my own feet...
--I feel pretty depressed and sluggish, can't read, can't study, no motivation...
--My face starts to go numb once the neck symptoms start up, speaking gets interesting...
--I'm sleeping all the time...
--and I can see/feel actual inflammation in my elbows. The little knob on my inside elbow goes away completely, and the joint feels warm. - When driving on a road trip, my hands go completely numb and cold. I see Raynaud's phenomenon in my right hand for the first time, but only for about ten minutes. The next week I go back in for a consult with my doctor at Student Health, and I get my fourth round of lupus screening including a syphilis screen. These are all negative except for the ANA, which is a clear positive for the first time.
Sunday, May 23, 2010
My Reconstructed Medical History, Part 1
Okay, so here's the best I can figure for most of my medical history, starting in 2001 and ending in 2005. As I look at this, I'm starting to realize a few things. First of all, I really need to start this list before my marriage in June of 2001 because there's a slight chance that's when my symptoms really began. Secondly... in the last nine years, I don't think I've managed to go six months without getting sick.
In short, that really sucks, and I find myself getting a little pissed at my health a little ex post facto. So, without further ado, here's what my medical CV looks like, as best as I can reconstruct it, for the years 2001-2005:
2001:
Feb-April?: I break out in a rash down my entire trunk and up my whole face in little red pinpricks. It breaks out so fast and so suddenly that the ER guys give me an Epi-pen shot. (I'm allergic to bees, so they were afraid I'd been stung and didn't know it.) I spend the rest of the night feeling like a superhero from the adrenaline rush and spend the rest of the night jumping off walls, climbing trees, and generally making a nuisance of myself. That's when I realized why people take drugs, man.
April: Extremely bad respiratory infection. I lose my voice for a couple of weeks.
August: The second-worst bladder infection I've ever had. Random doctor in an ER in Nebraska blames it on Honeymoon Curse (even though I'd been married two and a half months already).
Start of IBS symptoms.
Severe respiratory problems around Thanksgiving and when I return home for Christmas.
Get screened for gall bladder problems. Inflamed bowel shows up on an ultrasound instead, so I start getting treatment for IBS. A couple of ear infections, if I remember right.
This might also be the year I start having actual allergies for the first time in my life. If so, I got tested for allergies before being put on Claritin. The test showed no specific allergies, but a clear histamine response to something. The Claritin eventually stops working.
2003:
So far, I can't remember anything severe or specific. I think this might have been the year I had the sore in my cheek that got infected, along with a couple of ear infections. Respiratory infections when I return home for Christmas.
I had a bad case of something that looked like ringworm on one forearm. Eventually faded away with treatment.
Random fits of dry heaves every thirty minutes for six hours or so. This might be early indications of gall bladder problems, though.
2004:
All hell breaks loose. I max out the catastrophic cap on my insurance.
More numb hands in the spring, more throwing up, more severe allergy problems. Most of my other symptoms get better after I've been on Elavil to help me sleep for a few months. Joint pain gets pretty darn manageable, if I remember correctly.
My GP decides to treat me like I have fibromyalgia, but at some point during all of this I have my very first auto-immune check, a sed rate/ANA run, as well as an HIV test and a rheumatoid arthritis test. All negative, and my urine/liver functions are clear.
I think this is the first year the bruises start showing up. The first one is on the back of my shoulder blade and looks, well, bizarre, like a little barred spiral galaxy with two tongues, the color of a hickey. Then a couple others on my jawline and neck, and then a HUGE spidery looking thing that took up most of my left shoulder. My GP pokes at it, nonplussed, and wonders if it's from all the ibuprofen I've been on for my joint pain.
In short, that really sucks, and I find myself getting a little pissed at my health a little ex post facto. So, without further ado, here's what my medical CV looks like, as best as I can reconstruct it, for the years 2001-2005:
2001:
Feb-April?: I break out in a rash down my entire trunk and up my whole face in little red pinpricks. It breaks out so fast and so suddenly that the ER guys give me an Epi-pen shot. (I'm allergic to bees, so they were afraid I'd been stung and didn't know it.) I spend the rest of the night feeling like a superhero from the adrenaline rush and spend the rest of the night jumping off walls, climbing trees, and generally making a nuisance of myself. That's when I realized why people take drugs, man.
April: Extremely bad respiratory infection. I lose my voice for a couple of weeks.
August: The second-worst bladder infection I've ever had. Random doctor in an ER in Nebraska blames it on Honeymoon Curse (even though I'd been married two and a half months already).
Start of IBS symptoms.
Severe respiratory problems around Thanksgiving and when I return home for Christmas.
Actually, there's a funny story behind that. I went to the ER to get checked out the day after Christmas, and when the doctor looked in my ear he said "Holy Shit!" at all the fluid buildup behind my eardrum. No wonder I thought everything sounded like I was in a fish tank...2002: (I think)
Get screened for gall bladder problems. Inflamed bowel shows up on an ultrasound instead, so I start getting treatment for IBS. A couple of ear infections, if I remember right.
This might also be the year I start having actual allergies for the first time in my life. If so, I got tested for allergies before being put on Claritin. The test showed no specific allergies, but a clear histamine response to something. The Claritin eventually stops working.
2003:
So far, I can't remember anything severe or specific. I think this might have been the year I had the sore in my cheek that got infected, along with a couple of ear infections. Respiratory infections when I return home for Christmas.
I had a bad case of something that looked like ringworm on one forearm. Eventually faded away with treatment.
Random fits of dry heaves every thirty minutes for six hours or so. This might be early indications of gall bladder problems, though.
2004:
All hell breaks loose. I max out the catastrophic cap on my insurance.
- I had six cases of sinus infection between August of 03 and August of 04. The last two fail to respond to treatment, and I'm sent first to an ENT specialist, who throws his hands up in the air and sends me to a neurologist. The neurologist orders an MRI which turns up, surprise, sinusitis. ENT was fairly unconcerned. The neurologist was extremely alarmed and sent me to a rheumatologist.
- Debilitatingly bad headaches that would knock me out for days. The worst one felt like a migraine and lasted for two and a half weeks. The only thing that made it stop was Imitrex.
- Pericarditis in (I think) June. I pass out in two successive belt tests at Karate, and an EKG and X-ray confirm an inflamed pericardium. I get put on aspirin treatment for a month, and it subsides.
- Numbness starts in my fingers, palm and backs of hands, making it hard to type on my MA thesis. Elbows sore and hurt a lot. My GP was incredulous because I had "confusion of symptoms"-- meaning that I had numbness that indicated problems in both the wrist and the elbow, and everybody knows it can't happen in both places, right?!
- Excruciating pain in joints. Every joint in my extremities hurts at some point, usually in pairs. Most often, it hurt in my knees and elbows, but also in shoulders, back and hips. I get a lecture on "proper sleep hygiene" from a GP who decides I have fibromyalgia, primarily because I'm a woman and (I think) he doesn't like me too much.
- Bouts of canker sores make it hard to play my horn.
- I get sent to a rheumatologist, who yawns, glares at me the whole time, and decides I'm a freaking hypocondriac. He orders a muscle inflammation test, and it's negative. Decides I don't need followup, and I seriously consider not paying my bill because he's such a jerk.
- In December, I notice that my vision is really blurry when I drive home from my finals. I decide it must be eye strain, and I sleep it off. Meaning, copious napping, for weeks. All I want to do is sleep.
More numb hands in the spring, more throwing up, more severe allergy problems. Most of my other symptoms get better after I've been on Elavil to help me sleep for a few months. Joint pain gets pretty darn manageable, if I remember correctly.
My GP decides to treat me like I have fibromyalgia, but at some point during all of this I have my very first auto-immune check, a sed rate/ANA run, as well as an HIV test and a rheumatoid arthritis test. All negative, and my urine/liver functions are clear.
I think this is the first year the bruises start showing up. The first one is on the back of my shoulder blade and looks, well, bizarre, like a little barred spiral galaxy with two tongues, the color of a hickey. Then a couple others on my jawline and neck, and then a HUGE spidery looking thing that took up most of my left shoulder. My GP pokes at it, nonplussed, and wonders if it's from all the ibuprofen I've been on for my joint pain.
Aaaah, memories...
Well. I've been spending the last day or two racking my brains trying to figure out what symptoms I've had when, and I'm having a harder time of doing it than I thought. I'm having issues because of a few major problems:
1) I lived in Charleston, SC for five years. In that time I divided my doctor time between Student Health, a walk-in clinic supported by my husband's insurance, and a third GP when there was finally an opening for new patients shortly before I moved. In addition I have visits to a neurologist, ENT physician, rheumatologist, etc., and I can't remember their names to request records, and the walk-in place has since moved.
2) I'm discovering that, once you have a buttload of medical problems, they all sort of start to run together. I've had sinus problems so long that, to be honest, I'm having trouble remembering a time when I didn't have a face full of snot and my teeth didn't feel like they were going to explode.
3) Denial. I didn't go to the doctor at all for a lot of things because I didn't want to hear the same responses again and again:
On the flip side of things, however, I've had to take several long, circuitous trips down memory lane to try and figure out what happened when. For instance, I remember that I found out that I had pericarditis when I passed out in two successive belt tests for my karate class, so I've been digging through memento boxes trying to find my husband's certificates for his orange belt. Looking through the mementos has been rather fun, I have to admit. I was also teaching summer VBS when that happened, so I've been on the VBS publisher's website trying to figure out what theme they taught when. (Lava Lava Island? "Where Jesus' Love Flows?" Seriously? *Giggle*...)
Other things are harder to reconstruct. I have pictures for some events, like the hiking trip I passed out on, or incidental pictures that remind me of other things (Oh yeah, I was wearing long sleeves because of the weird bruise on my shoulder! Stuff like that.)
So, having dug through the archives, I'm making some discoveries. For one, most of my adult life, it seems, is tied up in the history of my illness. I can't find an easy dividing line between my marriage and my health problems. When I pointed this out to my husband, he said, "Oh. So I guess I'm the one making you sick." Then he grinned wickedly.
For another, the list I'm putting together makes me look a lot sicker than I think I realize I've been. I'm starting to realize how much I've had to push through, put aside, compromise, or cut short things because of what has seemed like minor illness. And that realization, I have to admit, really frustrates me.
So, if there's a moral to this story, it's this: WRITE DOWN EVERYTHING. And get copies of your medical records. Otherwise, you're going to have to get all Proustian with yourself trying to figure out just how sick you really are.
1) I lived in Charleston, SC for five years. In that time I divided my doctor time between Student Health, a walk-in clinic supported by my husband's insurance, and a third GP when there was finally an opening for new patients shortly before I moved. In addition I have visits to a neurologist, ENT physician, rheumatologist, etc., and I can't remember their names to request records, and the walk-in place has since moved.
2) I'm discovering that, once you have a buttload of medical problems, they all sort of start to run together. I've had sinus problems so long that, to be honest, I'm having trouble remembering a time when I didn't have a face full of snot and my teeth didn't feel like they were going to explode.
3) Denial. I didn't go to the doctor at all for a lot of things because I didn't want to hear the same responses again and again:
"Do you partake in recreational drug use at all?"Some doctors are really unimaginative, I must say. There got to be a point that I got so sick of the incredulous looks from skeptical doctors that I just put up with a lot of symptoms and self-medicated.
"You haven't been feeling depressed, have you?"
"Any chance you're pregnant?"
"Have you been tested for HIV?"
"Perhaps you have fibromyalgia and there's nothing we can do about it."
"It's just allergies."
"You don't partake in any recreational drug use, do you?"
On the flip side of things, however, I've had to take several long, circuitous trips down memory lane to try and figure out what happened when. For instance, I remember that I found out that I had pericarditis when I passed out in two successive belt tests for my karate class, so I've been digging through memento boxes trying to find my husband's certificates for his orange belt. Looking through the mementos has been rather fun, I have to admit. I was also teaching summer VBS when that happened, so I've been on the VBS publisher's website trying to figure out what theme they taught when. (Lava Lava Island? "Where Jesus' Love Flows?" Seriously? *Giggle*...)
Other things are harder to reconstruct. I have pictures for some events, like the hiking trip I passed out on, or incidental pictures that remind me of other things (Oh yeah, I was wearing long sleeves because of the weird bruise on my shoulder! Stuff like that.)
So, having dug through the archives, I'm making some discoveries. For one, most of my adult life, it seems, is tied up in the history of my illness. I can't find an easy dividing line between my marriage and my health problems. When I pointed this out to my husband, he said, "Oh. So I guess I'm the one making you sick." Then he grinned wickedly.
For another, the list I'm putting together makes me look a lot sicker than I think I realize I've been. I'm starting to realize how much I've had to push through, put aside, compromise, or cut short things because of what has seemed like minor illness. And that realization, I have to admit, really frustrates me.
So, if there's a moral to this story, it's this: WRITE DOWN EVERYTHING. And get copies of your medical records. Otherwise, you're going to have to get all Proustian with yourself trying to figure out just how sick you really are.
Looking into the Jaws of the Wolf
Well, it's been an interesting year for me. I'm a PhD candidate in a graduate program in Appalachia where I study Anglo-Saxon literature, and I just had my first big "coming-out" as a serious scholar a couple weeks ago (and my paper was very well received, too). I passed my field exam in Medieval literature back in March. I just turned thirty in April, and I just found my first gray hair. All in all, it's been a pretty momentous year for me.
Oh, and one other thing: I might have lupus.
I just found out about it last Thursday after some routine blood work. I've been symptomatic since at least 2004 off and on, and if I'm honest, my symptoms might have started just a few months after I was married in 2001, but honeymooning makes you forget a lot of unpleasantries. I have had problems with numbness in my hands before which lasted a few weeks, but this time it's been going on for about six weeks and it has been getting worse. So, I swung into my student health center on campus, and the fabulous Dr. H said she wanted to re-run my sed rate/ANA tests one more time, just to be sure. After six years of this garbage, I realize now that I was getting pretty blase about the whole thing.
"Sure, why not?" I quipped. "I suppose it's about time, anyhow." I gave two vials of blood and popped out like nothing ever happened. After all, the last three times I'd been tested were negative, and I was sure this batch was going to do the same.
Well... it wasn't. For the first time since I've been showing symptoms, I had a positive ANA (anti-nuclear antibody) test result. In layman's terms, my body is producing antibodies that attack cells. That doesn't mean I have SLE (systemic lupus erythematosus). But it does mean that I now have a non-zero probability that I have an auto-immune disease. I may actually have lupus after all. I now have to take the possibility that I have a life-changing and permanent illness seriously, and I'm about to undergo a long and painstaking (and expensive) process to figure out if my body is trying to kill me.
Well, shit. And I thought studying for my field exams was stressful.
Strangely, my first impulse was to start blogging about it. (No, that's not true. My first impulse was to get really, really drunk.) Blogging was the second impulse. But I've always been a writer by nature, and so it's natural for me to want to figure this all out by writing about it.
Secondly, I wanted to write this down because I'm realizing how much of a pain in the ass I'm about to have reconstructing my medical history for my rheumatologist. I've never kept any clear records over the last six years, and now I have to give a medical history to him, upon which a large part of my diagnosis will depend.
Third, I've discovered that whatever the hell this is that makes my fingers go numb, my intestines revolt and my heart to have inflammation episodes also screws with my head. I'm having trouble remembering things and I need to write them down.
And, finally, I'm hoping this might be useful for others. I can find a lot of info on the Internet about life with lupus. It's harder to find anyone who can give a good accounting of what it's like to have to live through the process of being screened for an autoimmune disease. It may very well turn out that I don't have SLE. I might have something else entirely. But my chances of having SLE have just gone from a mere possibility to a statistical probability in a week. I'm currently going through the panic/sickness/depression of dealing with this, and it would have been nice to know somebody else who's going through this, too, and compare notes.
So, that's my current project. This blog, I hope, will contribute to my medical well-being by giving me a record of everything I wish I had written down before. I hope that writing about all this keeps me sane, too. And, maybe it'll be useful for someone else to stay sane as well.
-- Ann-Marie
Oh, and one other thing: I might have lupus.
I just found out about it last Thursday after some routine blood work. I've been symptomatic since at least 2004 off and on, and if I'm honest, my symptoms might have started just a few months after I was married in 2001, but honeymooning makes you forget a lot of unpleasantries. I have had problems with numbness in my hands before which lasted a few weeks, but this time it's been going on for about six weeks and it has been getting worse. So, I swung into my student health center on campus, and the fabulous Dr. H said she wanted to re-run my sed rate/ANA tests one more time, just to be sure. After six years of this garbage, I realize now that I was getting pretty blase about the whole thing.
"Sure, why not?" I quipped. "I suppose it's about time, anyhow." I gave two vials of blood and popped out like nothing ever happened. After all, the last three times I'd been tested were negative, and I was sure this batch was going to do the same.
Well... it wasn't. For the first time since I've been showing symptoms, I had a positive ANA (anti-nuclear antibody) test result. In layman's terms, my body is producing antibodies that attack cells. That doesn't mean I have SLE (systemic lupus erythematosus). But it does mean that I now have a non-zero probability that I have an auto-immune disease. I may actually have lupus after all. I now have to take the possibility that I have a life-changing and permanent illness seriously, and I'm about to undergo a long and painstaking (and expensive) process to figure out if my body is trying to kill me.
Well, shit. And I thought studying for my field exams was stressful.
Strangely, my first impulse was to start blogging about it. (No, that's not true. My first impulse was to get really, really drunk.) Blogging was the second impulse. But I've always been a writer by nature, and so it's natural for me to want to figure this all out by writing about it.
Secondly, I wanted to write this down because I'm realizing how much of a pain in the ass I'm about to have reconstructing my medical history for my rheumatologist. I've never kept any clear records over the last six years, and now I have to give a medical history to him, upon which a large part of my diagnosis will depend.
Third, I've discovered that whatever the hell this is that makes my fingers go numb, my intestines revolt and my heart to have inflammation episodes also screws with my head. I'm having trouble remembering things and I need to write them down.
And, finally, I'm hoping this might be useful for others. I can find a lot of info on the Internet about life with lupus. It's harder to find anyone who can give a good accounting of what it's like to have to live through the process of being screened for an autoimmune disease. It may very well turn out that I don't have SLE. I might have something else entirely. But my chances of having SLE have just gone from a mere possibility to a statistical probability in a week. I'm currently going through the panic/sickness/depression of dealing with this, and it would have been nice to know somebody else who's going through this, too, and compare notes.
So, that's my current project. This blog, I hope, will contribute to my medical well-being by giving me a record of everything I wish I had written down before. I hope that writing about all this keeps me sane, too. And, maybe it'll be useful for someone else to stay sane as well.
-- Ann-Marie
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