The diagnosis was...... that I needed to go in and see the rheumatologist, the next day. I wasn't really given an option. It really was more of a demand. What else are you supposed to do when you have a specialist tell you, demand of you, to come in? You go in.
Lucky me, I couldn't even get my shoes on the next morning, I had to borrow a pair that were two sizes too big all so I could go see a doctor and get the face. You know the one. The one with one eyebrow raised. You probably got it from your mom on one or two (or many) occasions. That one that tells you, wow, I'm actually surprised you're here right now, that's how low of an opinion I have of your intelligence in this matter.
All my little denials were shot down. No I wasn't experiencing several months where I just kept running into different illnesses. Where was my explanation for the sores on my legs? If my pain and stiffness were just from work, why did I think I was worse in the mornings? Did I really think my feet should be that swollen, and numb? No, you have Wegner's Granulomatosis.
Alright, I was a little slow. But who really wants to have some disease that hardly anyone, anywhere has heard of?
So, where do I go from here? I get to take prednisone daily and methotrexate weekly. Now, these are two nifty little drugs with a series of side effects that can be pretty extreme, we'll talk about them later though because the ones from the prednisone alone can take up a whole post to themselves, but they have saved my life.
I'd be lying if I didn't say here that I was pretty freaked out wondering what would happen next, but I had a lot of support from my family that helped me get through. I wondered about what I was supposed to do now. Finally, I decided that I couldn't let my diagnosis run my life, it gave me a pause, but I wasn't going to let it stop me (Ha, such a blatant tie in to my blog name!) Joining forums for others with this disease and other types of vasculitis helped me, so maybe my blog could help someone else?
Tuesday, May 31, 2011
Sunday, May 29, 2011
The Difference a Real Doctor Makes!
It's amazing what competent medical personnel can accomplish. I got another chest x-ray and medicine that I wasn't allergic too. Hooray. The diagnosis this time: pneumonia.
Oh, and, it turns out the InstaCare never sent any of the records or chest x-rays or anything to my GP to let him know I'd been. About this time I begin to think that maybe InstaCare is out to destroy the reputation of the medical practice one patient at a time, but the more realistic side of me realizes that they are very busy and probably just forgot.
I had to wait a few days for the results of the chest x-ray, but my doctor was fairly certain that it wasn't going to be "just fine" and it wasn't. I had a shadow in one of my lungs. My doctor gave me even more, stronger, antibiotics and told me to stay home the rest of the week.
Yay, a whole week off before Christmas, I just wish I was feeling well enough to actually do something.
Eventually I am able to breath again and I return to the most excited faces of children. My return was triumphant, you'd have thought I was the president the way they acted. I was bigger than the upcoming holiday!
Granted, I only went back to work for a week because then it was Winter Break.
The holiday comes and goes. I'm still all kinds of achy and most mornings I have to psych myself up before attempting to move from my bed. I am also literally living on aspirin. I just assume that it's the lingering effects of the pneumonia.
I survived until my pulmonologist appointment at least, and if it wasn't for this lady being very curious I probably would have self-denialed myself to an early grave.
She did yet another chest x-ray, low and behold the shadow has grown bigger, not smaller. I have a tiny little tree growing in my lung, which is cool, but also not cool in so many ways. She has me walk around and notices my general stiffness.
Here I must pause and address the fact that almost a year prior to this episode I had to have some scar tissue removed from my sinuses and my ENT Dr. sent me to a rheumatologist to try and figure out how it happened (the discovery of the scar tissue episode will be posted at a later date) but the results of the tests were inconclusive.
Back to the current rambling story: The pulmonologist decides that she should run some blood tests, just to be on the safe side.
Here comes another gorey bit, though. Her resident vampire is not very good at her job. I have difficult veins to begin with, but this person did not believe me. They never do, much to my pain and suffering. She infiltrated the vein in the back of my hand, meaning, she stuck the needle completely through my vein. It was very painful, but she didn't move it because she was getting blood into the vile.
Now, I'm not saying that it was the infiltrated vein or was a result of what I later turned out to actually have, but my hand ballooned up to the size of, well, I don't know what exactly but it was huge. Looking at my red, swollen and very bruised hand was like looking at some deranged, hybrid fruit. You couldn't see the bones in the back of it, even the fingers were swollen. I couldn't move it at all and there was intense pain and suffering, which caused me no short amount of whining and a spilled tear or two or maybe lots. Fortunately, Loretab took my it all away.
Much too soon, the holiday break is over and I go back to work. I haven't heard anything from the pulmonologist, so I don't think much of it. Of course, I now can no longer wear my own shoes, my feet and legs are too swollen. This is nothing, I can handle it, I tell myself.
Thursday I get the phone call: The results are..........
Oh, and, it turns out the InstaCare never sent any of the records or chest x-rays or anything to my GP to let him know I'd been. About this time I begin to think that maybe InstaCare is out to destroy the reputation of the medical practice one patient at a time, but the more realistic side of me realizes that they are very busy and probably just forgot.
I had to wait a few days for the results of the chest x-ray, but my doctor was fairly certain that it wasn't going to be "just fine" and it wasn't. I had a shadow in one of my lungs. My doctor gave me even more, stronger, antibiotics and told me to stay home the rest of the week.
Yay, a whole week off before Christmas, I just wish I was feeling well enough to actually do something.
Eventually I am able to breath again and I return to the most excited faces of children. My return was triumphant, you'd have thought I was the president the way they acted. I was bigger than the upcoming holiday!
Granted, I only went back to work for a week because then it was Winter Break.
The holiday comes and goes. I'm still all kinds of achy and most mornings I have to psych myself up before attempting to move from my bed. I am also literally living on aspirin. I just assume that it's the lingering effects of the pneumonia.
I survived until my pulmonologist appointment at least, and if it wasn't for this lady being very curious I probably would have self-denialed myself to an early grave.
She did yet another chest x-ray, low and behold the shadow has grown bigger, not smaller. I have a tiny little tree growing in my lung, which is cool, but also not cool in so many ways. She has me walk around and notices my general stiffness.
Here I must pause and address the fact that almost a year prior to this episode I had to have some scar tissue removed from my sinuses and my ENT Dr. sent me to a rheumatologist to try and figure out how it happened (the discovery of the scar tissue episode will be posted at a later date) but the results of the tests were inconclusive.
Back to the current rambling story: The pulmonologist decides that she should run some blood tests, just to be on the safe side.
Here comes another gorey bit, though. Her resident vampire is not very good at her job. I have difficult veins to begin with, but this person did not believe me. They never do, much to my pain and suffering. She infiltrated the vein in the back of my hand, meaning, she stuck the needle completely through my vein. It was very painful, but she didn't move it because she was getting blood into the vile.
Now, I'm not saying that it was the infiltrated vein or was a result of what I later turned out to actually have, but my hand ballooned up to the size of, well, I don't know what exactly but it was huge. Looking at my red, swollen and very bruised hand was like looking at some deranged, hybrid fruit. You couldn't see the bones in the back of it, even the fingers were swollen. I couldn't move it at all and there was intense pain and suffering, which caused me no short amount of whining and a spilled tear or two or maybe lots. Fortunately, Loretab took my it all away.
Much too soon, the holiday break is over and I go back to work. I haven't heard anything from the pulmonologist, so I don't think much of it. Of course, I now can no longer wear my own shoes, my feet and legs are too swollen. This is nothing, I can handle it, I tell myself.
Thursday I get the phone call: The results are..........
Saturday, May 28, 2011
That's an Interesting Reaction
So, I already went over the part about how I decided to err on the side of going to regret this later and take the advice of InstaCare. I really should not have.
I took the pills and, if anything, my fever got higher! I also developed this nasty side effect of having my tongue swell up, it wasn't terrible, I could still breath. But talking became a problem. It made calling in to work an interesting experience; the poor cell phone reception plus me tawkink dlie I hadth a mouf thfull ofb oadbeel was probably an interesting conversation to listen to. On the other hand, I didn't have to say much in order to get excused.
Did I mention that I am allergic to augmentin?
So, I trundle off to bed for the night thinking to myself, well, it's just the flu. I should be better by tomorrow.
Then came 3 o clock in the morning. Why is it that everything terrible seems to happen at 3 in the morning? I remember what time it was because, like any young adult growing up in the technology age who is awoken during the pre-dawn hours by coughing up mouthfuls of blood I turned to my internet capable phone to look up and see what could be wrong with me.
Now, when I say mouthfuls, I mean "looks-like-a-movie-set-where-someone-got-shot-in-the-gut" MOUTHFULS, it sounds disgusting but the stuff was leaking out of my mouth even when I wasn't coughing. The silly thing was, as terrified as I was, I didn't go wake any of the other FOUR people in my house because I didn't want to worry them.
I have to say, that these were probably the actions that got me moved from my basement room into the guest room across from my parents.
So, I sit, and I wait. I don't really want to go back to sleep fearing that I might not wake up. But, according to the InstaCare my lungs look fine. I have nothing to worry about. It's just the flu. Some deadly, deadly flu, maybe. Have some antibiotics!
Finally, I hear other people awake and moving around as they get ready to go to work. This is when I force myself to stumble up the stairs and find out a really interesting fact: if you're coughing up blood and it has already been established that you're not breathing 100% physical and emotional stress are things you should avoid.
I make it to the kitchen table and even though I am gasping like a fish I'm not getting any air. Between the blood and my cough I had no space for air to travel. Luckily, I have a mother who knows how to deal with such situations!
She quickly got me a small glass of Sprite in order to clear my throat. Hallelujah! It worked! Thank you Mommy! You saved me!
Also, I decided that I should go see my real doctor.
I took the pills and, if anything, my fever got higher! I also developed this nasty side effect of having my tongue swell up, it wasn't terrible, I could still breath. But talking became a problem. It made calling in to work an interesting experience; the poor cell phone reception plus me tawkink dlie I hadth a mouf thfull ofb oadbeel was probably an interesting conversation to listen to. On the other hand, I didn't have to say much in order to get excused.
Did I mention that I am allergic to augmentin?
So, I trundle off to bed for the night thinking to myself, well, it's just the flu. I should be better by tomorrow.
Then came 3 o clock in the morning. Why is it that everything terrible seems to happen at 3 in the morning? I remember what time it was because, like any young adult growing up in the technology age who is awoken during the pre-dawn hours by coughing up mouthfuls of blood I turned to my internet capable phone to look up and see what could be wrong with me.
Now, when I say mouthfuls, I mean "looks-like-a-movie-set-where-someone-got-shot-in-the-gut" MOUTHFULS, it sounds disgusting but the stuff was leaking out of my mouth even when I wasn't coughing. The silly thing was, as terrified as I was, I didn't go wake any of the other FOUR people in my house because I didn't want to worry them.
I have to say, that these were probably the actions that got me moved from my basement room into the guest room across from my parents.
So, I sit, and I wait. I don't really want to go back to sleep fearing that I might not wake up. But, according to the InstaCare my lungs look fine. I have nothing to worry about. It's just the flu. Some deadly, deadly flu, maybe. Have some antibiotics!
Finally, I hear other people awake and moving around as they get ready to go to work. This is when I force myself to stumble up the stairs and find out a really interesting fact: if you're coughing up blood and it has already been established that you're not breathing 100% physical and emotional stress are things you should avoid.
I make it to the kitchen table and even though I am gasping like a fish I'm not getting any air. Between the blood and my cough I had no space for air to travel. Luckily, I have a mother who knows how to deal with such situations!
She quickly got me a small glass of Sprite in order to clear my throat. Hallelujah! It worked! Thank you Mommy! You saved me!
Also, I decided that I should go see my real doctor.
Friday, May 27, 2011
Putting the Practice back in Medical Practitioner!
Or, how I learned never to go back to the InstaCare!
October saw a great many things for me- most notably a new job- I ended up with bronchitis towards the end of the month. Tragedy. I missed all of the haunted houses during my favorite time of year. I didn't really think anything of it, I work with kids and germs are in the job description, right?
The cough never really went away, though. I still struggled to breath, got winded very easily and when I woke up in the mornings fresh faced and ready to greet the day after hitting the snooze button at least twice, I had this deep, grating, nasty cough. It was complete with all the gooey bits I'll only mention there. I sounded like a smoker without ever having the added benefits of coolness that cigarettes are supposed to imbue you with.
Oh well, I have asthma, maybe my long term inhaler wasn't working for me anymore. I made an appointment with a pulmonologist, but couldn't get in until December.I didn't worry, it wasn't like I was dying or anything.
November saw me enjoying my work and contemplating going back to school to get my Master's in Education. I was looking at houses to rent. Every morning I was a little stiffer, it was a little harder to get out of bed. My feet, knees and back ached. This isn't a big deal, though, I kept telling myself. I'm on my feet, hunched over, sometimes even crawling across the floor, all day long. Of course I'm tired, I work with very young kids.
December is when everything really hit the fan.
I was already stressed, working for a public school system meant that I was not going to get paid for two weeks out of the month. The holidays were coming up, life was getting hectic.
Oh, yeah, I almost forgot. That silly little cough had grown. After passing out at a meeting the first week in December, a passing out that no one noticed because we were sitting in chairs and watching a movie. I went home and spent the next few weeks in a fog. Not even the friendly kind of fog where everything is comfortable, cozy and you get to spend it inside wrapped up in warm blanket . No, it was the scary movie set in England fog where all the ghosts and monsters lurk and you don't have a working flashlight.
The meeting was on Friday, by Saturday my fever was high enough that my brains were probably wishing I came equipped with an AC. I decided it would be a good idea to see a doctor, little did I know I would have been better off waiting it out until Monday.
I go to the InstaCare, aside from the ER they are the only place open. A flu test is done, unpleasant. Who decided that the best way to check for the flu is by ramming a stick up someone's nose? Are they trying to mummify me? Good thing I have had this particular experience before so I know not to make any sudden movements lest I should be forced into forgetting math. A subject I'm not particularly fond of anyways.
The decision is made that my lungs sound pretty bad, I should get a chest x-ray. We stroll back to the x-ray room, well, the nurse strolled I wandered aimlessly back and forth from one side of the hallway to the next like an extra in a Romero film until I eventually stumbled my way to the x-ray machine.
The room is dark, a little forbidding. I am positioned against the wall/machine arm. The way they make you stand makes it seem like they are about to give you a public flogging or something.
"Alright, I'm going to need you to take a deep breath and hold it."
I tried, I really did. When I came too, luckily there was a chair I was able to flop into rather than falling on the floor, things were kind of swimming. I had to sit for a few minutes before I was able to try again. The nurse, in tones that were entirely too cheery for my taste said, "Well, at least we managed to get that one!"
I still had one more x-ray to go. They needed a side view. Once again I was told to hold my breath, once again I blacked out. It only took me the first time to notice the pattern, but after this second time around it seemed the medical staff was finally catching on. "Hmm, it's like you're not getting enough air or something."
Hooray! You figured it out, can I go back to the room now?
I stumble back down the hallway and wait and wait and wait. I just want to go home to bed, but apparently I died in the x-ray room and this is purgatory. Finally the doctor comes in and it's not as cool as you'd think that he doesn't look any older than I do. I just turned 24, are they handing out medical degrees out of high school now? Where was I when this happened?
"It looks like you have the flu, your lungs look fine." He left.
That was it. To say the least, I am skeptical of the flu diagnosis, specifically since he gave me an antibiotic. Oh well, he is a doctor. I think. I'm pretty sure. I hope.
October saw a great many things for me- most notably a new job- I ended up with bronchitis towards the end of the month. Tragedy. I missed all of the haunted houses during my favorite time of year. I didn't really think anything of it, I work with kids and germs are in the job description, right?
The cough never really went away, though. I still struggled to breath, got winded very easily and when I woke up in the mornings fresh faced and ready to greet the day after hitting the snooze button at least twice, I had this deep, grating, nasty cough. It was complete with all the gooey bits I'll only mention there. I sounded like a smoker without ever having the added benefits of coolness that cigarettes are supposed to imbue you with.
Oh well, I have asthma, maybe my long term inhaler wasn't working for me anymore. I made an appointment with a pulmonologist, but couldn't get in until December.I didn't worry, it wasn't like I was dying or anything.
November saw me enjoying my work and contemplating going back to school to get my Master's in Education. I was looking at houses to rent. Every morning I was a little stiffer, it was a little harder to get out of bed. My feet, knees and back ached. This isn't a big deal, though, I kept telling myself. I'm on my feet, hunched over, sometimes even crawling across the floor, all day long. Of course I'm tired, I work with very young kids.
December is when everything really hit the fan.
I was already stressed, working for a public school system meant that I was not going to get paid for two weeks out of the month. The holidays were coming up, life was getting hectic.
Oh, yeah, I almost forgot. That silly little cough had grown. After passing out at a meeting the first week in December, a passing out that no one noticed because we were sitting in chairs and watching a movie. I went home and spent the next few weeks in a fog. Not even the friendly kind of fog where everything is comfortable, cozy and you get to spend it inside wrapped up in warm blanket . No, it was the scary movie set in England fog where all the ghosts and monsters lurk and you don't have a working flashlight.
The meeting was on Friday, by Saturday my fever was high enough that my brains were probably wishing I came equipped with an AC. I decided it would be a good idea to see a doctor, little did I know I would have been better off waiting it out until Monday.
I go to the InstaCare, aside from the ER they are the only place open. A flu test is done, unpleasant. Who decided that the best way to check for the flu is by ramming a stick up someone's nose? Are they trying to mummify me? Good thing I have had this particular experience before so I know not to make any sudden movements lest I should be forced into forgetting math. A subject I'm not particularly fond of anyways.
The decision is made that my lungs sound pretty bad, I should get a chest x-ray. We stroll back to the x-ray room, well, the nurse strolled I wandered aimlessly back and forth from one side of the hallway to the next like an extra in a Romero film until I eventually stumbled my way to the x-ray machine.
The room is dark, a little forbidding. I am positioned against the wall/machine arm. The way they make you stand makes it seem like they are about to give you a public flogging or something.
"Alright, I'm going to need you to take a deep breath and hold it."
I tried, I really did. When I came too, luckily there was a chair I was able to flop into rather than falling on the floor, things were kind of swimming. I had to sit for a few minutes before I was able to try again. The nurse, in tones that were entirely too cheery for my taste said, "Well, at least we managed to get that one!"
I still had one more x-ray to go. They needed a side view. Once again I was told to hold my breath, once again I blacked out. It only took me the first time to notice the pattern, but after this second time around it seemed the medical staff was finally catching on. "Hmm, it's like you're not getting enough air or something."
Hooray! You figured it out, can I go back to the room now?
I stumble back down the hallway and wait and wait and wait. I just want to go home to bed, but apparently I died in the x-ray room and this is purgatory. Finally the doctor comes in and it's not as cool as you'd think that he doesn't look any older than I do. I just turned 24, are they handing out medical degrees out of high school now? Where was I when this happened?
"It looks like you have the flu, your lungs look fine." He left.
That was it. To say the least, I am skeptical of the flu diagnosis, specifically since he gave me an antibiotic. Oh well, he is a doctor. I think. I'm pretty sure. I hope.
Thursday, May 26, 2011
Introduction Post
After many a month pondering the idea I finally decided to blog my experiences with a rare and potentially fatal disease. I hope that maybe someone can find this and lose some of the feelings they might have of being alone and surviving through something that is at best difficult and at worst impossible. It would also be remiss if I didn't mention that it is cathartic for myself to whine, blather, complain and gripe about things. The idea is to do this with humor.
I plan on covering things like: My thoughts about what's going on in my body (believe me, I've learned a lot more about myself than I ever wanted to know), different experiences I've had lately (I have decided to try dating again, something that would most likely be a comedy of errors without the added disease), some coping strategies I've learned, research I've done and anything else I can think of that might be applicable.
You might not share in exactly the same situation as me, but hopefully I can make you smile, think, and learn a little bit more than what you did before reading. A tall order to fill, I know, but hey, I've got the summer off work and some time to kill!
I leave you with some mystery,
Farewell for now.
I plan on covering things like: My thoughts about what's going on in my body (believe me, I've learned a lot more about myself than I ever wanted to know), different experiences I've had lately (I have decided to try dating again, something that would most likely be a comedy of errors without the added disease), some coping strategies I've learned, research I've done and anything else I can think of that might be applicable.
You might not share in exactly the same situation as me, but hopefully I can make you smile, think, and learn a little bit more than what you did before reading. A tall order to fill, I know, but hey, I've got the summer off work and some time to kill!
I leave you with some mystery,
Farewell for now.
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