Twenty minutes ago: I'd just finished emailing my specialist about the thyroid, when my dad came upstairs with a thin envelope from the clinic in his hand. I knew before I opened it. Funny, I'd been dreading it for weeks without having any real reason. I read the letter and burst into tears. Yep, that's right: in the last four hours, I've allowed the full reality of my disease to hit me, my fake thyroid is out of whack, and I've learned that the one person who's helped me cope with all of the hell, both here and in England, is leaving the clinic in four weeks. I don't know if I can handle this.
Also, not having insurance? Doesn't help.
Something needs to go right soon, because for the first time I don't feel strong enough to take any more.
Showing posts with label health. Show all posts
Showing posts with label health. Show all posts
Wednesday, May 09, 2007
Feeling low, here I go
So I'm not really sure what to do here, and I'm kind of freaking out.
Ever since they removed my thyroid, my whole metabolism depends on a pill. A handful of pills, actually: little white and pink pills, smaller than a string of beads. T3, TSH, T4...these letters and numbers are meaningless to most people, but not to me. Every night, I line them up along the crease in my palm and gulp them down, like clockwork. They control my life. I wouldn't mind, actually, but the thing is that they aren't very good at their job. Everyone's metabolism is different; every thyroid patient responds to an individualized dose of synthetic hormones. In my case, regular doses don't work. We have to bump mine up, again and again, just to keep me functional. Bump too low, like we did in England, and things crash. Depression, lethargy, weight gain...Low thyroid levels pull me down a dark, cavernous hole until I can't see the surface. So I came home, and we bumped back up.
Now, six months later, it appears that the dose I've been on is a bit too high. I found out the hard way when I was speaking to a group of undergraduates today. Suddenly, an ancient symptom I'd forgotten completely came rushing back, and in the middle of my impromptu remarks, my tempo accelerated. Then, my heart started pounding. And then, best of all, I started shaking. Like, scared shitless of crowds shaking. It's not something I can control, because it isn't psychological. It's like a shot of adrenalin straight to the heart, or a quad-shot espresso slammed back, chased with sugar. It is an absolute nightmare. Four years ago, I'd reasoned away every indication that I was sick, and then I stood in front of my favorite class and quivered like the last leaf in fall. It was humiliating, and I finally had to admit that something was deeply awry.
I love public speaking, which is what makes this symptom the worst -- when I'm up there, and it happens, people look sorry for me. Some avert their eyes, and others smile reassuringly as if they think they can soothe the wild creature flying around the front of the room. This, of course, actually makes me nervous, and then my voice starts galloping like a horse unbridled.
I am about to interview in the final round of a job opening which involves a lot of public presentations, as do all of the other positions which I have a chance in hell of securing. I can try to knock the dose back down, but it will likely take months again (all after I see my doctor, which itself takes weeks). Worse, for the rest of my life I have to operate without knowing when this is going to hit. Hormone levels fluctuate, even when they're strictly prescribed, so I get to attend every presentation for each of my jobs knowing that at any moment I could blow the talk. I had no real indication that things were askew again until today! What's to stop that from happening years from now, when I'm giving a talk that really matters? Heck, I could get hired by this current place, only to be fired within weeks for acting like a frightened child in front of a major board meeting.
I'm suddenly so sick over this that I'm wondering if I should maybe stop thinking about careers that involve talking to groups of people. What can I do? Get hired by some company and say, "Oh, by the way, I have this autoimmune disorder that's been treated, but the side effects of the treatment can include adrenaline-fueled craziness in front of an audience."
I feel really, really sick. Most of the time, I manage to live with this disease without thinking about its implications on any meaningful level. Last year, I battled through some of the worst depression of my life in a new country, and I was so relieved to get home because at last, I thought, I'll get to be normal again. What the hell am I supposed to do now?
Ever since they removed my thyroid, my whole metabolism depends on a pill. A handful of pills, actually: little white and pink pills, smaller than a string of beads. T3, TSH, T4...these letters and numbers are meaningless to most people, but not to me. Every night, I line them up along the crease in my palm and gulp them down, like clockwork. They control my life. I wouldn't mind, actually, but the thing is that they aren't very good at their job. Everyone's metabolism is different; every thyroid patient responds to an individualized dose of synthetic hormones. In my case, regular doses don't work. We have to bump mine up, again and again, just to keep me functional. Bump too low, like we did in England, and things crash. Depression, lethargy, weight gain...Low thyroid levels pull me down a dark, cavernous hole until I can't see the surface. So I came home, and we bumped back up.
Now, six months later, it appears that the dose I've been on is a bit too high. I found out the hard way when I was speaking to a group of undergraduates today. Suddenly, an ancient symptom I'd forgotten completely came rushing back, and in the middle of my impromptu remarks, my tempo accelerated. Then, my heart started pounding. And then, best of all, I started shaking. Like, scared shitless of crowds shaking. It's not something I can control, because it isn't psychological. It's like a shot of adrenalin straight to the heart, or a quad-shot espresso slammed back, chased with sugar. It is an absolute nightmare. Four years ago, I'd reasoned away every indication that I was sick, and then I stood in front of my favorite class and quivered like the last leaf in fall. It was humiliating, and I finally had to admit that something was deeply awry.
I love public speaking, which is what makes this symptom the worst -- when I'm up there, and it happens, people look sorry for me. Some avert their eyes, and others smile reassuringly as if they think they can soothe the wild creature flying around the front of the room. This, of course, actually makes me nervous, and then my voice starts galloping like a horse unbridled.
I am about to interview in the final round of a job opening which involves a lot of public presentations, as do all of the other positions which I have a chance in hell of securing. I can try to knock the dose back down, but it will likely take months again (all after I see my doctor, which itself takes weeks). Worse, for the rest of my life I have to operate without knowing when this is going to hit. Hormone levels fluctuate, even when they're strictly prescribed, so I get to attend every presentation for each of my jobs knowing that at any moment I could blow the talk. I had no real indication that things were askew again until today! What's to stop that from happening years from now, when I'm giving a talk that really matters? Heck, I could get hired by this current place, only to be fired within weeks for acting like a frightened child in front of a major board meeting.
I'm suddenly so sick over this that I'm wondering if I should maybe stop thinking about careers that involve talking to groups of people. What can I do? Get hired by some company and say, "Oh, by the way, I have this autoimmune disorder that's been treated, but the side effects of the treatment can include adrenaline-fueled craziness in front of an audience."
I feel really, really sick. Most of the time, I manage to live with this disease without thinking about its implications on any meaningful level. Last year, I battled through some of the worst depression of my life in a new country, and I was so relieved to get home because at last, I thought, I'll get to be normal again. What the hell am I supposed to do now?
Sunday, January 28, 2007
Ugh
Stomach flu today (or food poisoning, but who cares enough to be decisive?). It's almost 6pm, and this is the first time I've been able to sit up for more than 10 minues in a row...so I'll get back to blogging when I'm not semi-delerious.
Sunday, August 13, 2006
Figures
Oh hooray. With less than two weeks to go, I have contracted some sort of malicious summer flu. My throat hurts. I can't breathe. My ears appear to have developed an airtight seal which makes my head hurt but still allows my incredibly annoying housemate's voice to boom down from upstairs.
I am very grumpy and easily annoyed. If I were the housemate, I'd pick up on my murderous vibes and tone it down...of course, that implies that my housemate has a self-preservation instinct. Judging by the year's worth of housekeeping atrocities, I'd say that's definitely not the case.
I am very grumpy and easily annoyed. If I were the housemate, I'd pick up on my murderous vibes and tone it down...of course, that implies that my housemate has a self-preservation instinct. Judging by the year's worth of housekeeping atrocities, I'd say that's definitely not the case.
Thursday, July 13, 2006
No, really, give me my damn meds
So, I suppose I can't attribute my current stress levels solely to my thesis. My phantom thyroid also appears to be going out of whack, as evidenced tellingly by my dry skin, thinnish hair, general inability to focus and raging mood swings (I'm fairly certain that my GIS now lives in terror of doing anything that might turn me into the alternately raging-or-sobbing psychopartner he never knew existed...unfortunately for him, I never know what's going to set me off, but everyone within a mile radius becomes aware as soon as it happens.)
Thyroid-related depression is always exacerbated by another cruel symptom, the "WTF happened to my thighs?!?" syndrome.
Some people enjoy clothes shopping. I used to be one of those feckless individuals until I suddenly found myself clothes shopping every season this year because my lower half no longer fit last season's wardrobe. Shopping's become a guessing game: gee, which size will I take this time? It never helps that current fashions appear to be designed for an alien race of stick insects with large waists and microscopic butts.
Me? I have a butt. I find it quite handy for sitting, but it's a little annoying when the only trousers I find that will make it past the thigh-butt meridian wind up being about two inches too big for my waist. Hello world! Yes, these are my Ex Officio briefs, thanks for asking.
Since it is somewhat alarming for an otherwise healthy individual with carefully cultivated diet and exercise behaviors to find herself going up two or three sizes in about six months, I visited my GP. Yes, this is the same GP whose full prescription for my motion-inhibiting back pain was to keep moving. I stupidly assumed that thyroid problems would raise more alarm, so after emailing my awe-inspiring endocrinologist back home, I went in to ask for a different medication that's commonly prescribed at home for people who just don't cut it with normal thyroxine. T3 has been prescribed in the US for years.
Note to self: in hindsight, it would have been helpful to know that GPs are very suspicious of anything that the US prescribes regularly, as they think we are a country of overmedicated hypochondriacs popping pills in lieu of afternoon snacks.
My conversation went something like this:
"I think that my thyroid levels have dropped a bit."
Annoying GP: "Oh?"
"You see, I seem to have developed a bunch of secondary symptoms --" At this point, she is already checking her watch. Appointments last 10 minutes here, unless you are extra-special ill, in which case you can book for 20 minutes if there's space. Generally, I think this means that they have to chuck a sickly child back onto the street to make room, judging from the number of people who appear to be living in the waiting area every time I visit. Hence, you just don't take up 20 minutes unless you are a sociopath because what kind of person would put their piddling autoimmune problems ahead of a snuffly child?
I start listing my symptoms. When I get to weight gain, her eyebrow arches.
"It's just that I've gone up two sizes since Christmas," I said. "For me, that's not normal."
The eyebrow climbed higher. She asks me to step on the scale. I do, and she informs me that I've actually lost weight. This is not possible. I ask her to check again.
"Look. Your BMI is still normal, so until you're fatter..."
Thyroid-related depression is always exacerbated by another cruel symptom, the "WTF happened to my thighs?!?" syndrome.
Some people enjoy clothes shopping. I used to be one of those feckless individuals until I suddenly found myself clothes shopping every season this year because my lower half no longer fit last season's wardrobe. Shopping's become a guessing game: gee, which size will I take this time? It never helps that current fashions appear to be designed for an alien race of stick insects with large waists and microscopic butts.
Me? I have a butt. I find it quite handy for sitting, but it's a little annoying when the only trousers I find that will make it past the thigh-butt meridian wind up being about two inches too big for my waist. Hello world! Yes, these are my Ex Officio briefs, thanks for asking.
Since it is somewhat alarming for an otherwise healthy individual with carefully cultivated diet and exercise behaviors to find herself going up two or three sizes in about six months, I visited my GP. Yes, this is the same GP whose full prescription for my motion-inhibiting back pain was to keep moving. I stupidly assumed that thyroid problems would raise more alarm, so after emailing my awe-inspiring endocrinologist back home, I went in to ask for a different medication that's commonly prescribed at home for people who just don't cut it with normal thyroxine. T3 has been prescribed in the US for years.
Note to self: in hindsight, it would have been helpful to know that GPs are very suspicious of anything that the US prescribes regularly, as they think we are a country of overmedicated hypochondriacs popping pills in lieu of afternoon snacks.
My conversation went something like this:
"I think that my thyroid levels have dropped a bit."
Annoying GP: "Oh?"
"You see, I seem to have developed a bunch of secondary symptoms --" At this point, she is already checking her watch. Appointments last 10 minutes here, unless you are extra-special ill, in which case you can book for 20 minutes if there's space. Generally, I think this means that they have to chuck a sickly child back onto the street to make room, judging from the number of people who appear to be living in the waiting area every time I visit. Hence, you just don't take up 20 minutes unless you are a sociopath because what kind of person would put their piddling autoimmune problems ahead of a snuffly child?
I start listing my symptoms. When I get to weight gain, her eyebrow arches.
"It's just that I've gone up two sizes since Christmas," I said. "For me, that's not normal."
The eyebrow climbed higher. She asks me to step on the scale. I do, and she informs me that I've actually lost weight. This is not possible. I ask her to check again.
"Look. Your BMI is still normal, so until you're fatter..."
Monday, April 24, 2006
The joys of NHS
In theory, universal health coverage is a great idea. In pratice, it's actually not bad -- but there are some perks to HMOs (I know, an oxymoron) that I find myself missing.
Last week, my back decided it had tolerated enough bad beds, sorry excuses for desk chairs, constant walking, chronic stress and assorted preexisting structural problems. The result? I've discovered the joys of lower back spasms. Of all the issues I've had lately, this may be the one that has me the most upset (and, consequently, leads to *more* back spasms). I'm a voraciously active person. If I'm not biking, I'm walking. If I'm not walking, I'm jogging. Favorite things to do? Hike. Bike everywhere. Kayak ineptly. Horseback ride. Walk the length and breadth of a city to get the feel. Things I'm suddenly afraid will be curtailed? All of the above. What that would mean for my life? Really, truly, can't think about it yet. But stuff hurts A LOT that never used to hurt. I'm desperately hoping that it will improve after school ends and that somehow I'll figure out whether this is all related to a short leg, a screwed-up sacrum or a torqued pelvis and get it sorted for good...the alternative is too depressing.
So, I managed to see my GP today (general practitioner), per the suggestion of the college nurse. I brought a hefty load of reading material to the appointment; it is an established fact that surgery appointments here (not "knock you out" surgery) are always behind schedule. Today, for example, I had enough time to plow through an incredibly dry article on issue linkage and water resources management, even though I arrived about five minutes before my appointment. During the 20 minute delay, a host of patients filed in and out, spending about three quarters of their time in the waiting room and no more than a quarter in an actual doctor's office. I felt particularly bad for the middle-aged man to my right, who'd been sitting grumpily in a chair when I entered, who became even more disgruntled when I was called before him, and who was downright surly when I left the building.
I'm fortunate to have an incredibly nice GP, but doctor's appointments here are different than the ones back home. You don't really get to chat, or even to bring up questions about other health issues that suddenly occur to you. They are efficient to the point of making you feel sort of like you're on a medical assembly line: introduce, diagnose, prescribe. Next! If you're lucky, you'll get ten minutes with the doctor -- I seem to average somewhere in the neighborhood of five. This causes you to become incredibly skilled at spitting out your medical history and current problem in 30 seconds or less. For example, today's conversation went something like this:
"Well, how do I sum this up quickly? Um, the thing is..." Oh crap, she's already giving me that impatient, "get to the point" look. "Lower back pain. Knife-edge spasms. Two weeks. Couple months stiffness prior. Could be short leg. Might be ilio-sacral. Don't know. Acupuncture. Chiropractic. Massage. Ideas?"
Before I knew it, I was plopped onto the examining table for a 12-second exam that consisted of bending my legs in various positions, noting that my glut was tight (no, really??), and referring me to a physical therapist for "evaluation, advice and exercises."
Great. Sounded good. The problem? Oh, I have to wait for six months or more to see this therapist. At which point I will no longer reside in Cambridge and will have the delightful choice of either a) taking a frigging three and a half-hour bus ride to see some guy about back pain, which will have increased considerably after the roadtrip; or b) trying to transfer my place on the waitlist to the therapist in Oxford, with no guarantee that it will actually happen. I tried repeating the NHS mantra, "It's free, it's free, it's free," but my back knew better and tightened up another notch.
So, I asked, feeling a bit deflated, what should I do in the meantime? The answer? Keep moving.
I reiterated the whole problem with the knife-edge pain and the discomfort moving. "Yep," she said brightly, "Motion is very important."
Maybe if I go bang my head against the wall hard enough for the next six months, the pain in my skull will distract me from my aching back.
Last week, my back decided it had tolerated enough bad beds, sorry excuses for desk chairs, constant walking, chronic stress and assorted preexisting structural problems. The result? I've discovered the joys of lower back spasms. Of all the issues I've had lately, this may be the one that has me the most upset (and, consequently, leads to *more* back spasms). I'm a voraciously active person. If I'm not biking, I'm walking. If I'm not walking, I'm jogging. Favorite things to do? Hike. Bike everywhere. Kayak ineptly. Horseback ride. Walk the length and breadth of a city to get the feel. Things I'm suddenly afraid will be curtailed? All of the above. What that would mean for my life? Really, truly, can't think about it yet. But stuff hurts A LOT that never used to hurt. I'm desperately hoping that it will improve after school ends and that somehow I'll figure out whether this is all related to a short leg, a screwed-up sacrum or a torqued pelvis and get it sorted for good...the alternative is too depressing.
So, I managed to see my GP today (general practitioner), per the suggestion of the college nurse. I brought a hefty load of reading material to the appointment; it is an established fact that surgery appointments here (not "knock you out" surgery) are always behind schedule. Today, for example, I had enough time to plow through an incredibly dry article on issue linkage and water resources management, even though I arrived about five minutes before my appointment. During the 20 minute delay, a host of patients filed in and out, spending about three quarters of their time in the waiting room and no more than a quarter in an actual doctor's office. I felt particularly bad for the middle-aged man to my right, who'd been sitting grumpily in a chair when I entered, who became even more disgruntled when I was called before him, and who was downright surly when I left the building.
I'm fortunate to have an incredibly nice GP, but doctor's appointments here are different than the ones back home. You don't really get to chat, or even to bring up questions about other health issues that suddenly occur to you. They are efficient to the point of making you feel sort of like you're on a medical assembly line: introduce, diagnose, prescribe. Next! If you're lucky, you'll get ten minutes with the doctor -- I seem to average somewhere in the neighborhood of five. This causes you to become incredibly skilled at spitting out your medical history and current problem in 30 seconds or less. For example, today's conversation went something like this:
"Well, how do I sum this up quickly? Um, the thing is..." Oh crap, she's already giving me that impatient, "get to the point" look. "Lower back pain. Knife-edge spasms. Two weeks. Couple months stiffness prior. Could be short leg. Might be ilio-sacral. Don't know. Acupuncture. Chiropractic. Massage. Ideas?"
Before I knew it, I was plopped onto the examining table for a 12-second exam that consisted of bending my legs in various positions, noting that my glut was tight (no, really??), and referring me to a physical therapist for "evaluation, advice and exercises."
Great. Sounded good. The problem? Oh, I have to wait for six months or more to see this therapist. At which point I will no longer reside in Cambridge and will have the delightful choice of either a) taking a frigging three and a half-hour bus ride to see some guy about back pain, which will have increased considerably after the roadtrip; or b) trying to transfer my place on the waitlist to the therapist in Oxford, with no guarantee that it will actually happen. I tried repeating the NHS mantra, "It's free, it's free, it's free," but my back knew better and tightened up another notch.
So, I asked, feeling a bit deflated, what should I do in the meantime? The answer? Keep moving.
I reiterated the whole problem with the knife-edge pain and the discomfort moving. "Yep," she said brightly, "Motion is very important."
Maybe if I go bang my head against the wall hard enough for the next six months, the pain in my skull will distract me from my aching back.
Thursday, July 14, 2005
Finding Achilles' heel
So yesterday, I go into the podiatrist for a routine procedure. I have curiously screwed up toes on my left foot; they always rest akimbo, with two leaning to the left and two leaning to the right. This results in the squashing of my fourth toe -- for years, I've been unable to keep nail polish on it for more than a day because my third toe will step on it and buff the polish right off.
In the past, this made a slightly uninteresting party tale. However, that changed when I went for a run back in May; about halfway through, I felt a shooting pain in my foot. I couldn't exactly stop, since I was a couple miles from home, so I ran back to the house and took off my shoe...the toe of my sock was a nice tomato red...suffice it to say that my third toe decided to beat the fourth one into submission. I spent the rest of the night trying to relieve pressure from the toenail digging into my skin.
So, yesterday, they cut one of the tendons on the bottom of my toe. The theory is that snipping it will cause the top portion of my toe to relax and flex up from under its neighbor.
The best part? I was privileged enough to go home with a stylish black bootie which I get to wear for the next 10 days! I can wear it everywhere: on a (very slow) walk, as a mate to the sexy kitten heeled sandal on my right foot, to the P-patch and the beach...My husband finds this incredibly amusing. He keeps hobbling next to me whenever we walk anywhere, saying things like, "Wanna race?" and giggling hysterically. Coalescent Boy also takes tremendous pleasure in joking about my "shower bag," a piece of blue plastic designed to keep my foot dry. According to him, it makes me look like I have a tortoise foot (read: big, clubby and relatively useless). He wants to incorporate it into a Halloween costume this year. If he can unwrap it from his neck in time, he's welcome to it.
This from the man I nursed to health after his knee surgery two years ago. Might I remind him that I did not laugh at all, even when we went for some air after his operation, which happened to fall on Halloween. As my Vicodin-intoxicated boyfriend limped unsteadily around Greek Row on his crutches, we passed a group of frat boys heading to a nearby costume party. One looked wide-eyed at Coalescent Boy and said, "Dude, he's dressed up like a gimp!" Coalescent Boy was in too much of a drug-induced haze to hear anything -- so I'm sure his constant egging now is only done to ensure that I don't miss any witticisms that fly my way. Awww, and he just walked by to ask, "How's my little cripple?" Thanks, sweetie. That's why I married ya'.
In the past, this made a slightly uninteresting party tale. However, that changed when I went for a run back in May; about halfway through, I felt a shooting pain in my foot. I couldn't exactly stop, since I was a couple miles from home, so I ran back to the house and took off my shoe...the toe of my sock was a nice tomato red...suffice it to say that my third toe decided to beat the fourth one into submission. I spent the rest of the night trying to relieve pressure from the toenail digging into my skin.
So, yesterday, they cut one of the tendons on the bottom of my toe. The theory is that snipping it will cause the top portion of my toe to relax and flex up from under its neighbor.
The best part? I was privileged enough to go home with a stylish black bootie which I get to wear for the next 10 days! I can wear it everywhere: on a (very slow) walk, as a mate to the sexy kitten heeled sandal on my right foot, to the P-patch and the beach...My husband finds this incredibly amusing. He keeps hobbling next to me whenever we walk anywhere, saying things like, "Wanna race?" and giggling hysterically. Coalescent Boy also takes tremendous pleasure in joking about my "shower bag," a piece of blue plastic designed to keep my foot dry. According to him, it makes me look like I have a tortoise foot (read: big, clubby and relatively useless). He wants to incorporate it into a Halloween costume this year. If he can unwrap it from his neck in time, he's welcome to it.
This from the man I nursed to health after his knee surgery two years ago. Might I remind him that I did not laugh at all, even when we went for some air after his operation, which happened to fall on Halloween. As my Vicodin-intoxicated boyfriend limped unsteadily around Greek Row on his crutches, we passed a group of frat boys heading to a nearby costume party. One looked wide-eyed at Coalescent Boy and said, "Dude, he's dressed up like a gimp!" Coalescent Boy was in too much of a drug-induced haze to hear anything -- so I'm sure his constant egging now is only done to ensure that I don't miss any witticisms that fly my way. Awww, and he just walked by to ask, "How's my little cripple?" Thanks, sweetie. That's why I married ya'.
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