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Well, life in general has sucked for me the last few years, but this last year has been a real pain in the gut. Some background is required.
Last January/February, I got mononucleosis for the first time ever at the tender age of 28. Joy. It involved me being sick with nearly nonstop fever for three months, several trips to my doctor and the ER (104+ temps are bad mmkay?), and even being admonished for taking aspirin before coming in to the doctor's office because then they can't confirm the stupid high fever I have, never mind that the ER could, but hey they never really checked the ER's files, even though they were across the street. Too much like work, I guess.
During the course of my mono, my spleen became enlarged/enflamed. A common-enough thing for people suffering of mono, all told. It's supposed to last up to six months. We start in February, so we end in January of next year, right?
Wait, hold on, I skipped a bit I think. Ah yes. That bit. Well, those bits.
So I recover from the mono and start going about my life as usual. I do things on the weekends when I can that get me up and active. And hitting people with padded sticks. In the woods. Anyway, I notice after running around some I get a stitch in my side on occasion, nothing major, just a minor annoyance. I figure it's just a normal stitch, probably caused by my spleen, and go about my business.
Then comes July, and a convention I love to go to. I run events, I partake in events, and I revel in the conventionarity of it all. I'm a big guy and I run things the whole time, so I've always got my backpack, filled with laptop, books, notes, and plastic things I toss around. I stop by the con suite where various refreshments are, and having located said mountain dew and cheetoes, I proceed on my merry way.
No, wait, I don't, I double over in pain so sharp and severe I drop what I am holding.
I like to think I'm not a wuss, and I have scars to prove it. Some that went down to the bone. I've driven over myself with a tractor while I was driving it. I once watched Twilight without a girlfriend making me do it. So it should come as no surprise to you that this sort of pain from picking up and holding some junk food came as sort of a shock to me.
When the shock cleared, my brain took a damage assessment and, yup, it came from the same place my stitch had been, only this was no stitch. At first, I thought it was a one time thing, well, hoped really, since that really freaking hurt, but no, it occurred for the rest of the convention. As best as my pain-addled brain could piece together after each episode, it came with activity. On top of the pain, each episode made me more sensitive and more likely to incur another episode, and severe or prolonged encounters with this also tended to result in muscle weakness and fatigue. This was clearly a problem, and so I went to my doctor.
"There's no way your spleen can be enlarged," said he, "it's been nearly six months, they all go down by then, the six months is the outlier."
"Well something is wrong there and it couldn't hurt to check, because I'm in intermittent, but tremendous pain."
"Fine," said he with a sigh, "I'll order some tests, or something."
So to the sonics I go, and lo, my spleen was still enlarged.
"It might be something with your guts, I'll send you to this guy or something, go have fun."
And thus I got my guts filmed, but nothing was visibly wrong.
"Oh, it's probably nothing then," said he, the man with the PhD
"But Doc, it hurts when I do anything more than sit around the house!"
"FINE," said he, "So see a specialist and leave me be,"
And I left, furious because not only couldn't this doctor figure out I had Mono until a month in, but he honestly didn't give a toss about me being in crippling pain from something seemingly related.
So referred I was to a specialist, who noted that I had oddly low levels of vitamin D (low is 20, I had less than 10), checked me for Celiac's, and gave me an antibiotic for my gut. Celiacs was negative (keep count here folks), and the drug didn't work, even though it was emblazoned on her desk. Stumped, she sent me in for a nMRI to get a better look at the area affected. It's November now, and my spleen is still enlarged, just in time to be stuffing for Thanksgiving, the ungrateful bastard, and after all I've done for him.
So I get shuffled to a surgeon, in case it needs to come out. We talk a bit and say, "yeah, unless it's a clear decision it's a bad idea" and we posit thoughts as to what could be going on. After much time of not hearing from anyone (I'm spoiled to quick responses WRT to tests from one hospital I worked in), we move to another specialist, who thinks steroids might be the answer, but wants another nMRI. Spleen's still big, so inflammation might be the problem, and thus steroids might be the answer, but before starting me on those, I get shuffled to another specialist to check me out for the things that could kill me if I start on steroids.
You know, all the fun stuff. It was like he loaded a big shotgun and let fly at the board of diseases and infections. Everything from Lyme's disease to HIV and all the stuff in between. Six vials of blood or so did the trick, it's a personal record for me.
So while all of this is going on, I go and get a new Internist since my last guy couldn't find his stethoscope with directions and a hearing aid. NI runs more tests (to my glorious shock, sitting on my ass for the better part of a year and eating what I can has not, in fact, screwed my cholesterol). They covered a few more benign things the other guy didn't take but were good bets.
I even end up becoming a warp core with all these tests! Scotty, beam me up, I am the dilithium matrix!
Seriously, getting injected with antimatter is one of the coolest thing ever for a nerd like myself. Okay, the situation surrounding it sucked, but hey.
So, no cancer, no HIV, no Lyme's disease and about two dozen (no, really) tests come back negative. The only one that came back positive? That I had mono in the last year or so.
So all cleared to start the steroids! I'm pumped, I'm looking forward to finally being done with this pain that kicks up if I walk too fast, or play guitar hero, or if I stand up too long, or if I'm in a particularly bumpy car ride. I start taking the pills and within a week, I get worse.
Between a frantic rush to the ER because of a chest pain I'd never felt before (later determined to be a side effect I had to the drug not a heart attack), miscommunication between the doc and myself as to dosage and removing myself from the dosage, etc. I ended up with a constant ache at about a third of the intensity of my normal episodes. To get rid of it, I have to get on a higher dosage of the steroids, and very, very slowly taper myself down.
The doc (specialist #3, for those counting), at this point basically gives up. He flat out forgets the details of my case, proclaiming me cured twice in the same day despite long, in-depth emails describing my problem (and the fact that it was pain that was the primary problem), and basically doesn't want to deal with it anymore, since it's clearly something that isn't his specialty, among other things. Finally, he refers me to a pain specialist (#5 now), with whom I am currently dealing. The current proposed diagnosis is post-viral costochondritus, which the pain guy seems to think is reasonable. Basically, my nervous system in my chest wall has gone nuts and needs to be told to settle down or it won't get ice cream. The fact that I get it ice cream anyway is beside the fact because damn it I needed it anyway and I'd need more if they didn't shut up about me getting some and them not getting any and I'm a good parent anyway how dare you judge me? YOU DON'T KNOW ME! YOU DON'T KNOW ME! DADDY NEEDS SOME COLBERT THEMED CREAMINESS!
Anyway...
Now, something to note. Since I left crappy internist at the beginning, barring the gut-scoping I had done at the beginning and an initial pair of ultrasounds, basically every blood test, imaging scan, and patient record was done in the same hospital, or a hospital-owned group two blocks away at most. I also know for a hard fact they are computerized.
Pain Guy's staff can't seem to get any of the files. This may come up later.
So I go for a meet and greet with the pain guy, and basically the course of treatment is to get some big needles (and I do mean big) inserted dorsally and injecting a local painkiller to the nerves along my ribs. I'm awake for the procedure so they don't, you know, puncture a lung in the process. Short version, it hurt. A lot. The injection sites still hurt. But I did get relief, sort of, for about two days.
Okay, so back to the drawing board. I call up the doc to let him know it didn't exactly go according to plan. He's a bit stumped, but says I can schedule another treatment and see how that goes, to which I point out that this one didn't exactly work so well, and it was the site of my primary point of pain. He sighs and says that we can look at other options, but the meds are right out given all the different meds I've been on to manage the pain.
I'd have gone over the meds I've been on in the last year in my head at the time if I had needed to, but the simple fact of the matter is that the only medication I had been on regarding my pain had been the steroids and that was it. I inform him of this and, to my sadly now unsurprise, he apparently had not been made aware of this fact.
From my medical records.
From the same. freaking. building.
So he writes me a scrip for the type of pain I'm dealing with (not a narcotic, it's quite lyrical isntead), and tells me to call him back in two weeks to discuss the dosage and further treatment. So I start the meds and, well...
Hold on folks...
Brace yourselves...
This might just shock you...
Will the elderly and those with heart conditions please stop reading now...
Women who are pregnant, suspect they might be pregnant, or are planning to become pregnant in the next six months please cease contact with this thread...
They worked!
Well, sort of. After that, you knew there had to be more, right?
For the last two weeks, I've been taking the meds, and I decided week two I would start pushing myself. If they didn't kick in by then, they probably weren't. Now, I didn't push hard, I just stopped limiting my walking speed, walking and standing more, and doing other general light activities that I normally would have been able to do. I even did some jumping jacks. The pain was still there, but it was muted to a mere fraction of the strength it had been hitting me with for the last year. I don't have to tell you what a relief that is. The muscle weakness and fatigue, however, continued unabated, so I decided to call the doctor at the end of the two weeks. I got his office, where they told me that he was on vacation for the rest of the month of July.
At least I can get out of the house more often now without clutching my side, but still...
Well, that's my story so far, most of it anyway.
Last time I drink a water bottle that's not mine, I'll tell you that much. Next time I'll go to the kitchen and get a new one after I come running back from killing goblins in the frigid air of January.
Last January/February, I got mononucleosis for the first time ever at the tender age of 28. Joy. It involved me being sick with nearly nonstop fever for three months, several trips to my doctor and the ER (104+ temps are bad mmkay?), and even being admonished for taking aspirin before coming in to the doctor's office because then they can't confirm the stupid high fever I have, never mind that the ER could, but hey they never really checked the ER's files, even though they were across the street. Too much like work, I guess.
During the course of my mono, my spleen became enlarged/enflamed. A common-enough thing for people suffering of mono, all told. It's supposed to last up to six months. We start in February, so we end in January of next year, right?
Wait, hold on, I skipped a bit I think. Ah yes. That bit. Well, those bits.
So I recover from the mono and start going about my life as usual. I do things on the weekends when I can that get me up and active. And hitting people with padded sticks. In the woods. Anyway, I notice after running around some I get a stitch in my side on occasion, nothing major, just a minor annoyance. I figure it's just a normal stitch, probably caused by my spleen, and go about my business.
Then comes July, and a convention I love to go to. I run events, I partake in events, and I revel in the conventionarity of it all. I'm a big guy and I run things the whole time, so I've always got my backpack, filled with laptop, books, notes, and plastic things I toss around. I stop by the con suite where various refreshments are, and having located said mountain dew and cheetoes, I proceed on my merry way.
No, wait, I don't, I double over in pain so sharp and severe I drop what I am holding.
I like to think I'm not a wuss, and I have scars to prove it. Some that went down to the bone. I've driven over myself with a tractor while I was driving it. I once watched Twilight without a girlfriend making me do it. So it should come as no surprise to you that this sort of pain from picking up and holding some junk food came as sort of a shock to me.
When the shock cleared, my brain took a damage assessment and, yup, it came from the same place my stitch had been, only this was no stitch. At first, I thought it was a one time thing, well, hoped really, since that really freaking hurt, but no, it occurred for the rest of the convention. As best as my pain-addled brain could piece together after each episode, it came with activity. On top of the pain, each episode made me more sensitive and more likely to incur another episode, and severe or prolonged encounters with this also tended to result in muscle weakness and fatigue. This was clearly a problem, and so I went to my doctor.
"There's no way your spleen can be enlarged," said he, "it's been nearly six months, they all go down by then, the six months is the outlier."
"Well something is wrong there and it couldn't hurt to check, because I'm in intermittent, but tremendous pain."
"Fine," said he with a sigh, "I'll order some tests, or something."
So to the sonics I go, and lo, my spleen was still enlarged.
"It might be something with your guts, I'll send you to this guy or something, go have fun."
And thus I got my guts filmed, but nothing was visibly wrong.
"Oh, it's probably nothing then," said he, the man with the PhD
"But Doc, it hurts when I do anything more than sit around the house!"
"FINE," said he, "So see a specialist and leave me be,"
And I left, furious because not only couldn't this doctor figure out I had Mono until a month in, but he honestly didn't give a toss about me being in crippling pain from something seemingly related.
So referred I was to a specialist, who noted that I had oddly low levels of vitamin D (low is 20, I had less than 10), checked me for Celiac's, and gave me an antibiotic for my gut. Celiacs was negative (keep count here folks), and the drug didn't work, even though it was emblazoned on her desk. Stumped, she sent me in for a nMRI to get a better look at the area affected. It's November now, and my spleen is still enlarged, just in time to be stuffing for Thanksgiving, the ungrateful bastard, and after all I've done for him.
So I get shuffled to a surgeon, in case it needs to come out. We talk a bit and say, "yeah, unless it's a clear decision it's a bad idea" and we posit thoughts as to what could be going on. After much time of not hearing from anyone (I'm spoiled to quick responses WRT to tests from one hospital I worked in), we move to another specialist, who thinks steroids might be the answer, but wants another nMRI. Spleen's still big, so inflammation might be the problem, and thus steroids might be the answer, but before starting me on those, I get shuffled to another specialist to check me out for the things that could kill me if I start on steroids.
You know, all the fun stuff. It was like he loaded a big shotgun and let fly at the board of diseases and infections. Everything from Lyme's disease to HIV and all the stuff in between. Six vials of blood or so did the trick, it's a personal record for me.
So while all of this is going on, I go and get a new Internist since my last guy couldn't find his stethoscope with directions and a hearing aid. NI runs more tests (to my glorious shock, sitting on my ass for the better part of a year and eating what I can has not, in fact, screwed my cholesterol). They covered a few more benign things the other guy didn't take but were good bets.
I even end up becoming a warp core with all these tests! Scotty, beam me up, I am the dilithium matrix!
Seriously, getting injected with antimatter is one of the coolest thing ever for a nerd like myself. Okay, the situation surrounding it sucked, but hey.
So, no cancer, no HIV, no Lyme's disease and about two dozen (no, really) tests come back negative. The only one that came back positive? That I had mono in the last year or so.
So all cleared to start the steroids! I'm pumped, I'm looking forward to finally being done with this pain that kicks up if I walk too fast, or play guitar hero, or if I stand up too long, or if I'm in a particularly bumpy car ride. I start taking the pills and within a week, I get worse.
Between a frantic rush to the ER because of a chest pain I'd never felt before (later determined to be a side effect I had to the drug not a heart attack), miscommunication between the doc and myself as to dosage and removing myself from the dosage, etc. I ended up with a constant ache at about a third of the intensity of my normal episodes. To get rid of it, I have to get on a higher dosage of the steroids, and very, very slowly taper myself down.
The doc (specialist #3, for those counting), at this point basically gives up. He flat out forgets the details of my case, proclaiming me cured twice in the same day despite long, in-depth emails describing my problem (and the fact that it was pain that was the primary problem), and basically doesn't want to deal with it anymore, since it's clearly something that isn't his specialty, among other things. Finally, he refers me to a pain specialist (#5 now), with whom I am currently dealing. The current proposed diagnosis is post-viral costochondritus, which the pain guy seems to think is reasonable. Basically, my nervous system in my chest wall has gone nuts and needs to be told to settle down or it won't get ice cream. The fact that I get it ice cream anyway is beside the fact because damn it I needed it anyway and I'd need more if they didn't shut up about me getting some and them not getting any and I'm a good parent anyway how dare you judge me? YOU DON'T KNOW ME! YOU DON'T KNOW ME! DADDY NEEDS SOME COLBERT THEMED CREAMINESS!
Anyway...
Now, something to note. Since I left crappy internist at the beginning, barring the gut-scoping I had done at the beginning and an initial pair of ultrasounds, basically every blood test, imaging scan, and patient record was done in the same hospital, or a hospital-owned group two blocks away at most. I also know for a hard fact they are computerized.
Pain Guy's staff can't seem to get any of the files. This may come up later.
So I go for a meet and greet with the pain guy, and basically the course of treatment is to get some big needles (and I do mean big) inserted dorsally and injecting a local painkiller to the nerves along my ribs. I'm awake for the procedure so they don't, you know, puncture a lung in the process. Short version, it hurt. A lot. The injection sites still hurt. But I did get relief, sort of, for about two days.
Okay, so back to the drawing board. I call up the doc to let him know it didn't exactly go according to plan. He's a bit stumped, but says I can schedule another treatment and see how that goes, to which I point out that this one didn't exactly work so well, and it was the site of my primary point of pain. He sighs and says that we can look at other options, but the meds are right out given all the different meds I've been on to manage the pain.
I'd have gone over the meds I've been on in the last year in my head at the time if I had needed to, but the simple fact of the matter is that the only medication I had been on regarding my pain had been the steroids and that was it. I inform him of this and, to my sadly now unsurprise, he apparently had not been made aware of this fact.
From my medical records.
From the same. freaking. building.
So he writes me a scrip for the type of pain I'm dealing with (not a narcotic, it's quite lyrical isntead), and tells me to call him back in two weeks to discuss the dosage and further treatment. So I start the meds and, well...
Hold on folks...
Brace yourselves...
This might just shock you...
Will the elderly and those with heart conditions please stop reading now...
Women who are pregnant, suspect they might be pregnant, or are planning to become pregnant in the next six months please cease contact with this thread...
They worked!
Well, sort of. After that, you knew there had to be more, right?
For the last two weeks, I've been taking the meds, and I decided week two I would start pushing myself. If they didn't kick in by then, they probably weren't. Now, I didn't push hard, I just stopped limiting my walking speed, walking and standing more, and doing other general light activities that I normally would have been able to do. I even did some jumping jacks. The pain was still there, but it was muted to a mere fraction of the strength it had been hitting me with for the last year. I don't have to tell you what a relief that is. The muscle weakness and fatigue, however, continued unabated, so I decided to call the doctor at the end of the two weeks. I got his office, where they told me that he was on vacation for the rest of the month of July.
At least I can get out of the house more often now without clutching my side, but still...
Well, that's my story so far, most of it anyway.
Last time I drink a water bottle that's not mine, I'll tell you that much. Next time I'll go to the kitchen and get a new one after I come running back from killing goblins in the frigid air of January.
<-- if you want--- you've had an interesting/expensive ride. 
Glad something is working... swollen spleen, jeeze... o_.
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