I've been so much in recovery mode that I've completely forgotten about disease blogging for a while. Boy oh boy, there's a lot to catch up on!
So, I had to drop the blog for a while, as I needed time to actually get s#!t done for a change. I'm now officially a year behind-er than when I started last fall, but on the bright side, I don't have scabies. That's an improvement from last year. :)
On the whole, things have been rough, but going well. Two of my last three ANA scans have come back as positive for anti-centromere antibodies, and the titer (the measure of how much inflammation there is) was finally high enough to prove that I was having an honest-to-goodness autoimmune reaction. No, I do not have allergies. No, I don't need to sleep more. I'm not (just) depressed. This is a freakin' REAL autoimmune event, dammit. So THERE.
Strangely, when my rheumtologist, Dr. W., told me this last summer, I was disappointed and thrilled at the same time. Of course I want this stupid thing to just magically disappear. I want to eat like a normal person and not need a nap after four hours of studying. At the same time, I felt vindicated. After the ass-chewing I got when my illness forced me to delay my second field exam, it felt better to know for sure that I wasn't making any of this up. that third positive ANA was the tipping point. It meant that my doctor and I could finally talk seriously about treatment for my symptoms. I've been on a standard dose of Plaquenil now for about three months, and I'm positive I'm seeing improvement.
As for what we actually call this thing... that's still up in the air. It depends on which standard you go by. Based on my symptoms alone, my GP, the fabulous Dr. H., still wonders if I'm in a pre-lupus stage. In some ways, that's the diagnosis I think I lean towards, too, mostly because there's a comfort in simply being to point to a name and say, "that's the bad man who punched me in the face."
Based on my blood work, however, my rheumatologist, Dr. W., is leaning towards CREST syndrome. For some irrational reason, that scares me more than lupus-- probably because I just haven't thought about it much. CREST syndrome, for those who don't know, is the kinder, gentler form of scleroderma. Patients have the same problem with hardening tissues, but it's usually limited to the hands, feet and face; other symptoms behave just like most other autoimmune diseases. That's the reason that, whenever I see Dr. W. now, he pinches my knuckles to see if the skin is getting any thicker. So far, so good.
The reason he's leaning toward CREST syndrome is because of those pesky anti-centromere antibodies. You see, each autoimmune disease has a similar profile, but they usually end up with favorite parts of the cell they attack. For CREST syndrome, usually that "signature" antibody is anti-centromere. Patients with a consistent presence of anti-centromere antibodies usually tend to get CREST syndrome more than lupus. Now that it's showed up on two different ANA screens, CREST syndrome looks more likely than it did before.
But hold on-- not so fast. Anti-centromere antibodies, it turns out, can indicate other problems as well. You know, like Raynaud's disease. And since I do have a problem with circulation, blue fingernails and the occasional attack of "zombie fingers," perhaps my centromere antibodies come from that instead. And since Raynaud's is often a complication of lupus... we're back at the drawing board.
So, at some point, I'll tell you all the interesting things I've learned about living with AI disease, trying to balance graduate school, and being a decent wife to my very, very understanding husband. But all that will have to come later.
Wednesday, September 7, 2011
Thursday, September 23, 2010
Riding the Yo-Yo-Coaster
So, things have not been happy-dapper over the last few weeks, autoimmune disease-speaking. It all started last August when my IBS suddenly turned into full-on chest pains, fatigue, and difficulty breathing, which I at first thought might be another onset of pericarditis (I talked about that in the last post). After a few hairy weeks with the fabulous Dr. H, we finally figured out that the chest pain (in the upper right part of my abdomen/chest) was actually an extremely pissed-off stomach. When she pressed down on my belly button, my hands and feet would shoot in the air from the pain like I was a marionette. I had gastroenteritis.
It was pretty obvious to both of us that the Mobic was the problem, but she tried a few different things first to see if I could adjust to the drug and keep my stomach lining at the same time. When a round of acid reducers and Lev-Bid didn't do any good, away went my Mobic, and I had to spend another two weeks on Lev-Bid and Prevacid until my glass stomach healed enough to handle food. Even as of today I can't take ibuprofen without getting violently ill.
Over the next few weeks, my posture straightened back out from the old lady shuffle I had adopted, and I stopped dropping weight like a rock. (I lost six pounds during my last two weeks on the Mobic.) I could eat solid food again, and I could stare at a McDonald's sign without going into dry heaves. Success!
Well, almost. The problem was that I didn't have any anti-inflammatories in my system anymore to take care of the swelling. The first month or so was heavenly: very little swelling, lots of energy, normal sleep functions. It was almost like I was... a grad student! Then, slowly but surely, the puffiness came back. In my wrists, it came back with a vengence, turning me into a klutz. My arms didn't fit at my sides anymore. My hands went tingly and numb again.
At about the same time, I stopped sleeping. At all. There is probably a host of reasons for this-- the fact that my joints hurt, for instance-- but a large one was the fact that my eyelids were cemented to my corneas and my mouth felt like a leather bag. No amount of eye-lube made a difference. As the sleeplessness worsened and coming off all my eye-drying medications didn't do squat, we tried fiddling with my Prozac to see if timing or dosage would help. That turned out to be a complete disaster. I also have been bouncing between yeast infections and bacterial infections, and I've been on either diflucan, Monistat or Metrogel basically this entire time. My husband looks so lonely.
Anyhow: since I couldn't take NSAIDs any longer, the fabulous Dr. H tried me out on a different class called COX-2 inhibitors, to see if I could tolerate them any better than the Mobic. She gave me a prescription for Celebrex with the instructions to go back on the tummy pills when I took it, just to see if I tolerated it at all. After the first day of incredible indigestion, things settled out and it looked like I could finally take the puff out of my physique.
Well, until day two. That night I felt a little itchy around the hands and feet (not all that unusual, really), but by the next afternoon I was positively digging at my palms. As I sat in a meeting with my graduate director getting read the riot act (a story I'll save for later,) I dug at my palms until my right wrist started bleeding. He looked at me like I was nuts.
"Um," I said, "Sorry. I think I'm having an allergic reaction to Celebrex." And I shuffled out of his office scratching my palms.
And so, after an emergency visit to the fabulous Dr. H, off I came from the Celebrex to see if it was an allergic reaction, and the puffiness, flu-like symptoms, and aching continued unabated. Trying to get all this medication sorted out makes me feel like a rubber paddle-ball. Do I stay on the NSAIDS or not? Which kind? How much Prozac is enough? When do I take it? Is my Allegra and Lev-Bid drying my eyes out so badly that I can't sleep? What do I do if I come off of them? Which is better-- having a splitting sinus headache and aching joints or feeling like I'm going to hurl when I take ibuprofen?
Somebody stop this ride, I wanna get off...
UPDATE: Well, we figured out what the scratching was all about. No, I am not allergic to Celebrex. I have scabies.
Normally you have to sleep in the same room as somebody to catch scabies, but according to the fabulous Dr. H., there's been a scabies breakout in two of the dorms, and it's spreading all over campus without direct contact. As best as we can figure, I caught it off of a kid after I sat down in the same comfy chair in Starbuck's after they left.
This is so humiliating. I bathe, dammit. I have good personal hygeine. Is that too much to ask of our incoming freshman students as well?
It was pretty obvious to both of us that the Mobic was the problem, but she tried a few different things first to see if I could adjust to the drug and keep my stomach lining at the same time. When a round of acid reducers and Lev-Bid didn't do any good, away went my Mobic, and I had to spend another two weeks on Lev-Bid and Prevacid until my glass stomach healed enough to handle food. Even as of today I can't take ibuprofen without getting violently ill.
Over the next few weeks, my posture straightened back out from the old lady shuffle I had adopted, and I stopped dropping weight like a rock. (I lost six pounds during my last two weeks on the Mobic.) I could eat solid food again, and I could stare at a McDonald's sign without going into dry heaves. Success!
Well, almost. The problem was that I didn't have any anti-inflammatories in my system anymore to take care of the swelling. The first month or so was heavenly: very little swelling, lots of energy, normal sleep functions. It was almost like I was... a grad student! Then, slowly but surely, the puffiness came back. In my wrists, it came back with a vengence, turning me into a klutz. My arms didn't fit at my sides anymore. My hands went tingly and numb again.
At about the same time, I stopped sleeping. At all. There is probably a host of reasons for this-- the fact that my joints hurt, for instance-- but a large one was the fact that my eyelids were cemented to my corneas and my mouth felt like a leather bag. No amount of eye-lube made a difference. As the sleeplessness worsened and coming off all my eye-drying medications didn't do squat, we tried fiddling with my Prozac to see if timing or dosage would help. That turned out to be a complete disaster. I also have been bouncing between yeast infections and bacterial infections, and I've been on either diflucan, Monistat or Metrogel basically this entire time. My husband looks so lonely.
Anyhow: since I couldn't take NSAIDs any longer, the fabulous Dr. H tried me out on a different class called COX-2 inhibitors, to see if I could tolerate them any better than the Mobic. She gave me a prescription for Celebrex with the instructions to go back on the tummy pills when I took it, just to see if I tolerated it at all. After the first day of incredible indigestion, things settled out and it looked like I could finally take the puff out of my physique.
Well, until day two. That night I felt a little itchy around the hands and feet (not all that unusual, really), but by the next afternoon I was positively digging at my palms. As I sat in a meeting with my graduate director getting read the riot act (a story I'll save for later,) I dug at my palms until my right wrist started bleeding. He looked at me like I was nuts.
"Um," I said, "Sorry. I think I'm having an allergic reaction to Celebrex." And I shuffled out of his office scratching my palms.
And so, after an emergency visit to the fabulous Dr. H, off I came from the Celebrex to see if it was an allergic reaction, and the puffiness, flu-like symptoms, and aching continued unabated. Trying to get all this medication sorted out makes me feel like a rubber paddle-ball. Do I stay on the NSAIDS or not? Which kind? How much Prozac is enough? When do I take it? Is my Allegra and Lev-Bid drying my eyes out so badly that I can't sleep? What do I do if I come off of them? Which is better-- having a splitting sinus headache and aching joints or feeling like I'm going to hurl when I take ibuprofen?
Somebody stop this ride, I wanna get off...
UPDATE: Well, we figured out what the scratching was all about. No, I am not allergic to Celebrex. I have scabies.
Normally you have to sleep in the same room as somebody to catch scabies, but according to the fabulous Dr. H., there's been a scabies breakout in two of the dorms, and it's spreading all over campus without direct contact. As best as we can figure, I caught it off of a kid after I sat down in the same comfy chair in Starbuck's after they left.
This is so humiliating. I bathe, dammit. I have good personal hygeine. Is that too much to ask of our incoming freshman students as well?
Monday, August 30, 2010
My New Disease Buddy
So, a funny thing happened a couple of weeks ago i-- I got myself an AD buddy. Someonme had mentioned to me that there was someone else in the department with health problems, but I never made the connection because I didn't know who she was. Anyhow, at the graduate student meeting we're all required to go to before classes started, the grad director asked if we had any questions. I raised my hand and started asking a few pointed questions about the new policy.
You see, my university switched from UHC to Aetna back on August 1st, and in the transition we don't have any information on our policies. In fact, I am STILL without an insurance card and it's been about a month. At the time, we didn't even have a group policy number for insurance purposes, and I was getting antsy. So I started trying to get some answers from our grad director, which is usually a mistake anyway, but anyhow...
"So, I was wondering if we have a university-wide group policy number yet," I asked in the meeting, "because I think I can still at least get my prescriptions with that even if we don't have insurance cards yet. Has anybody heard anything on that yet?" My grad director stammered a little.
"Well, no..." he answered. "I'm not sure..." A woman behind me and to my right perked up at the question.
"What are we supposed to do in the meantime?" I asked as patiently as I could.
"If you keep your reciepts you can get refunded as soon as the policy gets finalized..." he offered.
"But my rheumatology appointments are 375 bucks a visit," I said. "I'll have to just wait. Do you know how much longer I'll need to?" The dark-haired woman behind me raised her hand and started answering all my questions, as she had just grilled the insurance rep the day before and found out as much as she could. After she filled in the entire grad student body on the state of the insurance debacle, she mouthed come talk to me. We met up in the hallway. It was "Mary Beth," a grad student who started the year before me.
"You're seeing a rheumatologist," she said matter-of-factly. "What's going on?" So I told her about what was going on for the last year or so, and that's when she told me that she probably had rheumatoid arthritis or lupus, her doctor (Dr. W as it turns out!) wasn't sure which. And she was on anti-malarials and a few other things right now, and she couldn't get some of her prescriptions filled during the insurance fiasco.
So, "Mary Beth" is a bit of a pro at all this now-- her sister has RA, and she's been dealing with much more severe symptoms for a couple of years now. She knows the ropes with my rheumatologist. She knows the insurance hierarchy at my college better than they know themselves. And she's developed some good plans for balancing work around her health. She says she's nearly normal now, and is even back to hiking, which for RA is a heck of an improvement.
We had a little weird bonding moment in the hallway when we both found out we were having problems with Raynaud's disease. "I call it dead-man fingers," she joked.
"My name for it is 'zombie fingers,' I confessed, and we both laughed. We also both found out we're being treated by Dr. H, which was funny, and we both talked about how cool she is. So "Mary Beth" and I are going to get together sometime and have a chat.
I wouldn't wish this crap on my worst enemy. But I'm so damn glad that I now have someone to talk to who actually gets it. I didn't realize how much I needed that.
You see, my university switched from UHC to Aetna back on August 1st, and in the transition we don't have any information on our policies. In fact, I am STILL without an insurance card and it's been about a month. At the time, we didn't even have a group policy number for insurance purposes, and I was getting antsy. So I started trying to get some answers from our grad director, which is usually a mistake anyway, but anyhow...
"So, I was wondering if we have a university-wide group policy number yet," I asked in the meeting, "because I think I can still at least get my prescriptions with that even if we don't have insurance cards yet. Has anybody heard anything on that yet?" My grad director stammered a little.
"Well, no..." he answered. "I'm not sure..." A woman behind me and to my right perked up at the question.
"What are we supposed to do in the meantime?" I asked as patiently as I could.
"If you keep your reciepts you can get refunded as soon as the policy gets finalized..." he offered.
"But my rheumatology appointments are 375 bucks a visit," I said. "I'll have to just wait. Do you know how much longer I'll need to?" The dark-haired woman behind me raised her hand and started answering all my questions, as she had just grilled the insurance rep the day before and found out as much as she could. After she filled in the entire grad student body on the state of the insurance debacle, she mouthed come talk to me. We met up in the hallway. It was "Mary Beth," a grad student who started the year before me.
"You're seeing a rheumatologist," she said matter-of-factly. "What's going on?" So I told her about what was going on for the last year or so, and that's when she told me that she probably had rheumatoid arthritis or lupus, her doctor (Dr. W as it turns out!) wasn't sure which. And she was on anti-malarials and a few other things right now, and she couldn't get some of her prescriptions filled during the insurance fiasco.
So, "Mary Beth" is a bit of a pro at all this now-- her sister has RA, and she's been dealing with much more severe symptoms for a couple of years now. She knows the ropes with my rheumatologist. She knows the insurance hierarchy at my college better than they know themselves. And she's developed some good plans for balancing work around her health. She says she's nearly normal now, and is even back to hiking, which for RA is a heck of an improvement.
We had a little weird bonding moment in the hallway when we both found out we were having problems with Raynaud's disease. "I call it dead-man fingers," she joked.
"My name for it is 'zombie fingers,' I confessed, and we both laughed. We also both found out we're being treated by Dr. H, which was funny, and we both talked about how cool she is. So "Mary Beth" and I are going to get together sometime and have a chat.
I wouldn't wish this crap on my worst enemy. But I'm so damn glad that I now have someone to talk to who actually gets it. I didn't realize how much I needed that.
Tuesday, August 3, 2010
How a Bus Driver Diagnosed my Depression
The wisest person back in my hometown in the Rockies isn't on the school board, he isn't mayor, and he's not a millionaire. His name is "AJ," and he's a bus driver for the school district. AJ is sort of an odd duck, to be honest-- he's in his seventies, looks a little bit like an Appalachian Santa Claus, and he scrapes by on a minimum wage, more or less, working three jobs. He moved to my home region from back east about thirty years ago. It's hard to imagine someone with more life experience and wisdom as AJ, and he has the most amazing intuition. It's something that has served him well as a protector of children-- he has been the reason that a lot of abusive parents and child molesters are in prison because he can tell when something is wrong, and he's the guy all the kids feel safe enough to talk to when there's trouble at home. There are troubled kids and troublemakers who won't even talk to their teachers or police officers, but they'll just open up to AJ. He's proof that you can't judge someone by appearance.
So, I got to see AJ again a couple of weeks ago when I was back in town. I was with my father down at the local ice cream joint, where AJ tends to park himself in the evenings. He has a bad back, so he grabs a picnic bench with a burger and coke, and lets the town come to him to visit. Back in the day when I was in high school, he was my bus driver for speech and debate; and when I was an undergraduate, AJ and I worked together during the summers, so we have a pretty good relationship. I plunked myself down at his picnic bench to catch up, and I'm sure my face lit up when I saw him. He's one of my favorite people.
Anyway, as we were talking about the local gossip, how his job with the district was going, and how our friends were doing, AJ looks me in the eye and starts going off on a tangent about depression. "You knew I have problems with chemical depression once in a while, didn't you?" He asks me, and then he tells me the story of how he was first diagnosed: how all of a sudden he was too tired to even walk in his front door after work, and he was too tired to eat, and it was all he could do to make it to work every morning. He told me that he went to talk to our local doctor thinking he was anemic or something, and after they chased down all the options, they decided that it was depression. So, they put him on an antidepressant regimen, and eventually he became his old self again. "Yep, there's no shame in realizing you have a depression problem," he said with a piercing glance in my direction. "It's a real medical problem, and one that needs to be treated like a medical problem." I just bobbed my head and agreed, and it never once occurred to me that he was telling that story for a reason. I just thought it was a strange place that our conversation had wandered to.
Well, it seems that, after years of discerning other peoples' problems with that wicked intuition of his, AJ sniffed right down to the heart of mine, too. When I got back home in Appalachia a week later, I was so tired that literally all I did was sleep. I slept until I needed to teach class, and then when I got home I slept some more. At one point I went to cook dinner, and I only got as far as opening a bag of rice before I was so exhausted I couldn't even think. So I took a nap.
It wasn't a matter of thinking evil, dark thoughts or wanting to hurt myself, or getting all emo and wanting to cry all the time. It was a matter of being able to function on a normal level. I felt like somebody had sucked the life out of me with a straw, and I couldn't muster the willpower to even do things I really liked to do. So, I went to see the fabulous Dr. H to chat. I had been having chest pains recently, too, so I was wondering if I should get screened for pericarditis again.
Well, the fabulous Dr. H checked for the normal stuff, the EKG was clean, so there was nothing really wrong with me, physically speaking. We started to chat about what it might be, and I blurted out, "But, Dr. H, something's wrong, I feel like I can't even walk in my front door without getting exhausted..." and I paused. Where had I heard that before? It was AJ, of course, and I thought to myself, oh shit, what if he's right? I looked at her in exasperation and said, "Okay, so there's no physical cause. Maybe... maybe I'm depressed." She gave me a knowing look, and she reminded me about how common depression and mental fatigue are with autoimmune disease, and she sent me upstairs to chat with the psychologist. And he decided that, yes, I'm probably depressed and need treatment.
So, that was two weeks ago, and now I find myself on a 20 mg dose of Prozac to see what it'll do for my symptoms, and I'm chatting with a head-shrinker (actually, he's a real nice guy, and also a Dr. H) once a week to see if we can work on getting my daily routine back on the right track. It's still to early to tell if it's going to take care of all the problems I'm having, but I'm already starting to feel a little more... level. Like I'm not trying to walk up a hill with a sixty pound pack just getting through the day. I think that's a pretty good start, really.
I'm still not sleeping very well, but that's a combination of some really severe dry eyes and a cramp in my gut which I've nicknamed "Conan the Obstruction" (I'm having gastroenteritis symptoms, you see, probably from the Mobic.) But I still feel more capable of surviving through the day than I did three weeks ago. So I think it's a start, and I think that the Prozac is probably here to stay. Dr. H and I will talk in about another two weeks to decide if pushing the dosage up to 40 mg is a good idea... but we'll see.
The important thing, however, is just realizing that I didn't need a shrink to diagnose me. I needed a friend who's walked the same road. So, I guess the moral of this story is: if your bus driver starts talking depression, listen to him.
So, I got to see AJ again a couple of weeks ago when I was back in town. I was with my father down at the local ice cream joint, where AJ tends to park himself in the evenings. He has a bad back, so he grabs a picnic bench with a burger and coke, and lets the town come to him to visit. Back in the day when I was in high school, he was my bus driver for speech and debate; and when I was an undergraduate, AJ and I worked together during the summers, so we have a pretty good relationship. I plunked myself down at his picnic bench to catch up, and I'm sure my face lit up when I saw him. He's one of my favorite people.
Anyway, as we were talking about the local gossip, how his job with the district was going, and how our friends were doing, AJ looks me in the eye and starts going off on a tangent about depression. "You knew I have problems with chemical depression once in a while, didn't you?" He asks me, and then he tells me the story of how he was first diagnosed: how all of a sudden he was too tired to even walk in his front door after work, and he was too tired to eat, and it was all he could do to make it to work every morning. He told me that he went to talk to our local doctor thinking he was anemic or something, and after they chased down all the options, they decided that it was depression. So, they put him on an antidepressant regimen, and eventually he became his old self again. "Yep, there's no shame in realizing you have a depression problem," he said with a piercing glance in my direction. "It's a real medical problem, and one that needs to be treated like a medical problem." I just bobbed my head and agreed, and it never once occurred to me that he was telling that story for a reason. I just thought it was a strange place that our conversation had wandered to.
Well, it seems that, after years of discerning other peoples' problems with that wicked intuition of his, AJ sniffed right down to the heart of mine, too. When I got back home in Appalachia a week later, I was so tired that literally all I did was sleep. I slept until I needed to teach class, and then when I got home I slept some more. At one point I went to cook dinner, and I only got as far as opening a bag of rice before I was so exhausted I couldn't even think. So I took a nap.
It wasn't a matter of thinking evil, dark thoughts or wanting to hurt myself, or getting all emo and wanting to cry all the time. It was a matter of being able to function on a normal level. I felt like somebody had sucked the life out of me with a straw, and I couldn't muster the willpower to even do things I really liked to do. So, I went to see the fabulous Dr. H to chat. I had been having chest pains recently, too, so I was wondering if I should get screened for pericarditis again.
Well, the fabulous Dr. H checked for the normal stuff, the EKG was clean, so there was nothing really wrong with me, physically speaking. We started to chat about what it might be, and I blurted out, "But, Dr. H, something's wrong, I feel like I can't even walk in my front door without getting exhausted..." and I paused. Where had I heard that before? It was AJ, of course, and I thought to myself, oh shit, what if he's right? I looked at her in exasperation and said, "Okay, so there's no physical cause. Maybe... maybe I'm depressed." She gave me a knowing look, and she reminded me about how common depression and mental fatigue are with autoimmune disease, and she sent me upstairs to chat with the psychologist. And he decided that, yes, I'm probably depressed and need treatment.
So, that was two weeks ago, and now I find myself on a 20 mg dose of Prozac to see what it'll do for my symptoms, and I'm chatting with a head-shrinker (actually, he's a real nice guy, and also a Dr. H) once a week to see if we can work on getting my daily routine back on the right track. It's still to early to tell if it's going to take care of all the problems I'm having, but I'm already starting to feel a little more... level. Like I'm not trying to walk up a hill with a sixty pound pack just getting through the day. I think that's a pretty good start, really.
I'm still not sleeping very well, but that's a combination of some really severe dry eyes and a cramp in my gut which I've nicknamed "Conan the Obstruction" (I'm having gastroenteritis symptoms, you see, probably from the Mobic.) But I still feel more capable of surviving through the day than I did three weeks ago. So I think it's a start, and I think that the Prozac is probably here to stay. Dr. H and I will talk in about another two weeks to decide if pushing the dosage up to 40 mg is a good idea... but we'll see.
The important thing, however, is just realizing that I didn't need a shrink to diagnose me. I needed a friend who's walked the same road. So, I guess the moral of this story is: if your bus driver starts talking depression, listen to him.
Sunday, July 25, 2010
Lupus Guide for the Perplexed: Eye Problems
Associated Terms:
keratoconjunctivitis sicca;
Sjögren’s Syndrome;
blepharitis; xerostomia;
There's No Crying In Lupus;
No Tears for You!
Just like other organs, SLE can involve the eyes and the organs associated with the eye as well; the symptoms usually consist of dry, red, and irritated eyes without the associated fun of pot-smoking; dry mouth, without the associated fun of pot-smoking; and conjunctivitis, without the associated fun of... oh, never mind. You get the point. Your eyes are baked but the rest of you is not.
The associated dryness, irritation and lack of tear production can, naturally, cause problems with your eyes. For one, you might be really, really prone to conjunctivitis, better known as pinkeye. (Pinkeye-- seriously? There's nothing quite like your eyes reminding you what it was like being in kindergarten again, right?) For those who have underlying diseases causing the problems, it can lead to other nasty things. Like blindness, or damaged eyes.
 |
| Yeah, sometimes it feels like that. |
Another common problem is blepharitis, which may sound all naughty and whatnot, but it just means that you have a problem with your eyelids getting irritated and swollen. You know, like that guy up above. Not a problem at all.
And a really, really common problem is xerostomia, which just means cotton-mouth. If your immune system is bothering your tear glands, there's a good shot it's bothering your other lubricating glands, too.
This can often times be caused by a various array of irritations, but a really common one is a lack of proper eye lube. You see, in your face is a little version of the Soup Nazi keeping you from getting your fair share of tears to keep your eyes healthy. He smacks your fingers with his itty-bitty ladle and screams, no tears for you! NO! Some of us also have a Spit Nazi, so we get dry mouth along with it.
Another possible problem is Sjögren’s syndrome, which is its own little autoimmune hell in a Dixie Cup. Sometimes it occurs with other autoimmune diseases like lupus or rheumatoid arthritis, but Sjögren’s syndrome can also wreak havoc all by its little lonesome. 5 to 10 percent of lupus sufferers will have this disease, and getting close to half of Sjorgren's sufferers will have something else, too. Some of the major problems with this disease are white blood cells gunking up and attacking the glands in your face. Since it overlaps so much with other diseases like SLE, it can be hard to diagnose.
The upside is that Sjögren’s is uncommon, and the other problems can be treated fairly easily with a few hygiene changes, such as using atrificial, preservative-free tears, eye ointments, cleaning your eyelids, and watching depressing chick-flicks. (Okay, I made that last one up.) The Sjögren’s Syndrome website has some great tips on all that if your interested.
Friday, July 16, 2010
Gray Matters
I hate doctors. I especially hate specialists.
I hate examination rooms.
I hate health insurance.
But mostly, I hate this $*&@# #&#^@^% #*%%@ disease.
Six years, who knows how much money and worry, and I still don't have a f------ diagnosis. I just so want to hurt somebody. Preferably my rheumatologist, which is funny, because he made the right call and is a reasonable fellow. But I still want to punch him because he works in a field of medical study that really pisses me off right now.
So, I went to see Dr. W yesterday, full of fear, and loathing, and really bad lunch because I had to grab something on the fly. He listened to my medical history, poked my joints really carefully, and told me to get dressed. Then he came back in the room, sat down, and said, "Well, I'm afraid you're in the middle of a medical gray area right now--" and I almost immediately burst into tears, not because I was disappointed that I didn't have a disease, but because it meant I couldn't get any kind of treatment. I am so non-functional right now I can't do shit except sleep and cruise the Internet, and he wants me to keep waiting. That reaction kind of startled him.
In any case, here's what I learned: first of all, my positive ANA ain't worth shit in terms of a diagnosis. In fact, he said, people will pop positive for one test and then have a negative test later. People pop positive on an ANA for no reason at all. And, since my lupus antibody panel was clean, I have to keep getting my ANA run to see if it stays positive.
Second of all, my ANA result could be indicative of CREST syndrome just as much as lupus. To be honest, CREST syndrome scares me more, maybe because the idea of my lungs and pulmonary arteries turning into concrete sounds, you know, dangerous.
In the end, all I left with was a suggestion to try melatonin on top of my Elavil to help me get to sleep and DHEA to help with the fatigue.
So, I went in to a specialist's office with a positive ANA and swollen joints, and I left with a diagnosis of: dum-dum-dum... positive ANA and swollen joints. Welcome to the doldrums of autoimmune diagnosis, people.
I hate examination rooms.
I hate health insurance.
But mostly, I hate this $*&@# #&#^@^% #*%%@ disease.
Six years, who knows how much money and worry, and I still don't have a f------ diagnosis. I just so want to hurt somebody. Preferably my rheumatologist, which is funny, because he made the right call and is a reasonable fellow. But I still want to punch him because he works in a field of medical study that really pisses me off right now.
So, I went to see Dr. W yesterday, full of fear, and loathing, and really bad lunch because I had to grab something on the fly. He listened to my medical history, poked my joints really carefully, and told me to get dressed. Then he came back in the room, sat down, and said, "Well, I'm afraid you're in the middle of a medical gray area right now--" and I almost immediately burst into tears, not because I was disappointed that I didn't have a disease, but because it meant I couldn't get any kind of treatment. I am so non-functional right now I can't do shit except sleep and cruise the Internet, and he wants me to keep waiting. That reaction kind of startled him.
In any case, here's what I learned: first of all, my positive ANA ain't worth shit in terms of a diagnosis. In fact, he said, people will pop positive for one test and then have a negative test later. People pop positive on an ANA for no reason at all. And, since my lupus antibody panel was clean, I have to keep getting my ANA run to see if it stays positive.
Second of all, my ANA result could be indicative of CREST syndrome just as much as lupus. To be honest, CREST syndrome scares me more, maybe because the idea of my lungs and pulmonary arteries turning into concrete sounds, you know, dangerous.
In the end, all I left with was a suggestion to try melatonin on top of my Elavil to help me get to sleep and DHEA to help with the fatigue.
So, I went in to a specialist's office with a positive ANA and swollen joints, and I left with a diagnosis of: dum-dum-dum... positive ANA and swollen joints. Welcome to the doldrums of autoimmune diagnosis, people.
Wednesday, July 14, 2010
My final meal
I have to admit-- this is my last night before my big rheumatology appointment, and I'm not exactly a picture of mental peace right now. I couldn't get to sleep last night, had a couple of panic attacks, and I ended up sleeping on my futon downstairs with an old, beat-up stuffed Pound Puppy salvaged from my childhood for comfort. (Oh-- and my husband is out of town. His internship informed him that he had to spend a week in Baltimore about two weeks ago. What sucktastic timing.) So, whatever I find out tomorrow, I'm going to find out alone, and he gets to find out over the phone.
So, what was my response tonight? Sushi. I went to my favorite faux Asian restaurant and got tempura salmon rolls, some soup, and some spring rolls. And strangely, now full of salt, tempura, and MSG, I feel so much better.
People are weird when they try to handle stress, and I guess I'm no different. Here's for miso soup and maki!
So, what was my response tonight? Sushi. I went to my favorite faux Asian restaurant and got tempura salmon rolls, some soup, and some spring rolls. And strangely, now full of salt, tempura, and MSG, I feel so much better.
People are weird when they try to handle stress, and I guess I'm no different. Here's for miso soup and maki!
Subscribe to:
Posts (Atom)
