It comes and goes. We're on higher doses of steroids now and I'm still shedding pounds like tears at Les Miserables, so I'm not doing great. I'm good at short, small, twitter-sized thoughts, but writing more than a few paragraphs is too much right this sec.
Also, I think republicans should die in a fire, as I am one of the people who held onto their job too long to get 99 weeks of unemployment because of their shenanigans.
Wednesday, June 30, 2010
Monday, June 7, 2010
Quick note
The course of antibiotics and steroids I am on is wearing me down a LOT. I appreciate the kind words, and comments on the blog, but understand that relative quiet on my twitter feed, etc., and the fact that I'm not answering emails, has everything to do with being just about as run down as ever and nothing to do with any one of my fans!
I do love you all, and I am trying to keep up. Leaving comments here, or talking to Phoe or Lablad are probably the best ways to contact me, as I'm not frequently checking email or the like.
Love to all of you-
KM
I do love you all, and I am trying to keep up. Leaving comments here, or talking to Phoe or Lablad are probably the best ways to contact me, as I'm not frequently checking email or the like.
Love to all of you-
KM
Saturday, June 5, 2010
On being the character from the first act of a House that's really about Cutty, or whoever...
In mid-March I spent a very expensive day in the emergency room of the local hospital which (I did not know at the time) was #1 for customer service, and deservedly so. Even though the ER visit took about 8 hours, several of which involved waiting for tests on my lungs-including some obscure ones-and even though it culminated in my leaving the hospital as the drugs they gave me for pain wore off-making the ride home very brutal. I was diagnosed with "probably pneumonia" and given broad spectrum antibiotics and steroids, which worked well for about 12 days, whereupon I got round two of the pneumonia follies, which we're waiting for obscure test results on, (the first several were inconclusive, now we've got another PCR in the works, which would be done already if *I* was in a lab doing it!) but looks an awful lot like pertussis.
Since pertussis does not respond well to antibiotics past the first week, we settled down for the 4-6 week ride to ride it out, and I did the pertussis heyride. The pertussis heyride, by the way, involves sitting on the toilet with a bucket in front of you going "Hey! my brains are flowing out of my butt!" and "Hey! My brains are flowing out of my mouth." Pertussis basically makes you cough, until you puke. If you're not a puker, pertussis makes you cough, then want to puke, then crap your brains out, a symptom which goes away when dehydration kicks in and your reaction to food is "oh, dear god! take it away!" and I suffered such classical pertussis symptoms, and lost a very slimming 20lbs on it, that the differential board from the pneumonia follies part two literally looks like this:
-Pertussis (assumed.)
If, by the way, I test positive for pertussis, expect to read at least one post from me from jail in the future, because I am going to Falcon Punch the uterus of the first anti-vax mommy I meet post-pertussis. I was titered for antibodies to it last year, and was in the safe zone, so if what led to this because some IDIOT refused a pertussis vaccine and let it mutate in her little plague rat until it found me with a weakened immunity as a result of part one of the pneumonia follies, I will take things into my own hand. Animals who bring disease into the herd should be culled from the herd. {Not sure if serious, buttt....}
After about 5 weeks of pertussis, with some days starting to look better than others, and the puking done, I noticed an interesting phenomenon:
During the coughing fits that followed the brief flight up the stairs to use the only bathroom in my little house, the nailbeds of my toes turned the exact same shade of blue as the grotesquely blue porcelain on our toilet and matching bathtub. Literally turning "It's a boy," bottle of Curel, Jelly Belly Berry-Blue jelly bean blue. Blue Blue. Not blueish. Not like, how I am a pale blue Scottish person, but BLUE BLUE BLUE.
I should add this pertussis even coincided with my insurance company deciding to be the soup nazi of insurance. While my WONDERFUL, WONDERFUL family doctor would have had no problem seeing me whilst I owed them $160 from the last visit the insurance company failed to pay for (they have promised to cut me a check...still waiting) I was not going back until the personal check I cut them went through, which occurred early last week.
On the Wednesday before the pneumonia follies part trois, I encountered my first of what we now assume were blood-oxygen deprivation crises. I literally told my wife that *IF* I MADE IT THROUGH THE NIGHT, I was totally making a doctor's appointment in the morning with my primary. I could not cite anything that was distinctly wrong, but I felt like I was about to die. I didn't want to go to the emergency room because I already owed them $400, after the insurance company played their part.
In the morning, I felt fine, although even taking 3 steps winded me, and we realized I hadn't eaten for 3 days, and chalked it up to low blood sugar. In reality, low-blood oxygen crises tell your brain that death is imminent, and you get the signs and symptoms of diabetes, migraines, sleep apnea, and even psychosis, and the fact that I took my migraine meds, which include a vasoconstrictor for helping blood reach the brain and nowhere else, and then spent the time practicing deep breathing and meditation without moving ANYTHING not involved in breathing, probably kept me alive. The fact that my recurrent anemia has decided to take a break from not letting me have red blood cells also kept me alive...and that's dumb luck...that comes out of remission all the time. Nonetheless, the wife did not back down despite my new claims that everything was 'all better' and made the appointment (at my insistence, not an emergency one) for the Tuesday following the holiday.
Those people who read my tweets at 4am and the like on those days between O2 crisis #1 and the doctor's appointment, and who can read between the lines, will know I spent the next several days afraid to sleep because I was GOING TO DIE if I lost consciousness. When the chest pain got too intense, I'd take a half a moderate dose narcotic, which would reduce my blood oxygen level (making me feel worse) in the short term, but would confine me to sitting in bed or on the floor in the crash position, breathing deeply, and thus raising my blood oxygen level.
My doctor's appointment day began with the worst set of symptoms yet, and a wonderful, wonderful neighbor drove me there. Laying on my back, breathing with all the deep breathing capacity of a Wagnerian Mezzo-Soprano, with my WONDERFUL family doctor using WONDERFUL electronic records to review my sparkling clean ex-ray from Pneumonia Follies parte une, I told her, point blank, that I was not getting enough oxygen, and being a biologist, I felt like this was an anemia (we've dealt with Mr. A. Nemia before) or some other blood disorder, or my mitochondria were dying or something, and so she took my blood oxygen level, remember, as I am lying there, breathing deep, barely moving, and my saturation is a lovely 81%. Normal is approaching 100%, below 80% is getting intubated.
She promptly gave me my two choices: Be driven to hospital by neighbor who was still there or go in an ambulance with the pretty lights.
Walking from the neighbor's car to the ER, where I was expected, my blood oxygen level was now 74%. They allowed me to breathe on my own, even walk, because obviously MY body would handle low O2, probably because I *do* have some experience with dealing with low o2 in both skin diving and mountain climbing. Since I did not have panic attacks or headaches in the 70s, we've concluded I may've gone as low as 50% on those nights with the narcotics and vasoconstrictors... in short, yes, I may've died if I had fell asleep, after all.
Through the night, while I sucked O2 and got up to a whopping 86% on my own, they ran test after test that looked lovely. With the exception of high blood pressure, nothing could be found wrong with me. Heart healthy, actually beautiful blood work, gorgeous cholesterol and my new, slimmer weight moved me from the 'obese' category to the 'overweight' one, (which was always a silly distinction anyway, as I have a big fat belly but carry a muscle mass of almost 20%, which means that if I did not have short stubby legs, but had the same size hips, shoulders, etc, and a few more inches of height, I could look like a female wrestler...the real kind, not the show kind.)
Despite clear ex-rays, my chest CT showed the 'ground glass' effect, and we went with an assumption of either Diffuse interstitial pneumonitis or Extrinsic allergic alveolitis, which could've been caused by my often discussed umbrella cockatoo.
Biopsy of the lung, however, was inconsistent with these findings, and if you're playing House, the home game, this is where we concluded that it A. Was not Lupus and B. Was not Cancer.
In fact, the VERY high doses of steroids and broad spectrum antibiotics themselves were fixing me, again.- we played no games with this, as a former employee working in a research lab where *my* research was BSL2, but where I often worked with researchers skirting BSL3, and where I worked with DOD classified compounds with as-yet-unclassified safety levels, the hospital took me very seriously, which resulted in a lovely private room, and a bunch of blood sent to the CDC. You'll all be relieved to know I have neither Anthrax or SARS, by the way...can't find out about the MDR-TB, because the test for exposure to TB is invalidated by the steroids, but no sign of it in the lung biopsy.
Eventually, I was sent home, after 5 days in the hospital, WITHOUT A WORKING DIAGNOSIS...which is clearly unfun, as not just I but people like my MOM would probably like to know why I was in the hospital for five days getting biopsies and the like. I was clearly not contagious, as no one in my home or family had developed this, and I was sent home with an understanding that a flare-up in symptoms points to environmental causes, and no flare-up points to a hard to catch virus.
Like the patient who nearly dies after the too, too, early release in the first act of House, only to come back in the last act, I am now officially waiting for the change in scenery to do something to me, while we wait for labs and I have to return to the hospital for more CTs and maybe more biopsies in one week...
Until then, my fans, keep me in your hopes and prayers, and OUT of your episodes of House!
Since pertussis does not respond well to antibiotics past the first week, we settled down for the 4-6 week ride to ride it out, and I did the pertussis heyride. The pertussis heyride, by the way, involves sitting on the toilet with a bucket in front of you going "Hey! my brains are flowing out of my butt!" and "Hey! My brains are flowing out of my mouth." Pertussis basically makes you cough, until you puke. If you're not a puker, pertussis makes you cough, then want to puke, then crap your brains out, a symptom which goes away when dehydration kicks in and your reaction to food is "oh, dear god! take it away!" and I suffered such classical pertussis symptoms, and lost a very slimming 20lbs on it, that the differential board from the pneumonia follies part two literally looks like this:
-Pertussis (assumed.)
If, by the way, I test positive for pertussis, expect to read at least one post from me from jail in the future, because I am going to Falcon Punch the uterus of the first anti-vax mommy I meet post-pertussis. I was titered for antibodies to it last year, and was in the safe zone, so if what led to this because some IDIOT refused a pertussis vaccine and let it mutate in her little plague rat until it found me with a weakened immunity as a result of part one of the pneumonia follies, I will take things into my own hand. Animals who bring disease into the herd should be culled from the herd. {Not sure if serious, buttt....}
After about 5 weeks of pertussis, with some days starting to look better than others, and the puking done, I noticed an interesting phenomenon:
During the coughing fits that followed the brief flight up the stairs to use the only bathroom in my little house, the nailbeds of my toes turned the exact same shade of blue as the grotesquely blue porcelain on our toilet and matching bathtub. Literally turning "It's a boy," bottle of Curel, Jelly Belly Berry-Blue jelly bean blue. Blue Blue. Not blueish. Not like, how I am a pale blue Scottish person, but BLUE BLUE BLUE.
I should add this pertussis even coincided with my insurance company deciding to be the soup nazi of insurance. While my WONDERFUL, WONDERFUL family doctor would have had no problem seeing me whilst I owed them $160 from the last visit the insurance company failed to pay for (they have promised to cut me a check...still waiting) I was not going back until the personal check I cut them went through, which occurred early last week.
On the Wednesday before the pneumonia follies part trois, I encountered my first of what we now assume were blood-oxygen deprivation crises. I literally told my wife that *IF* I MADE IT THROUGH THE NIGHT, I was totally making a doctor's appointment in the morning with my primary. I could not cite anything that was distinctly wrong, but I felt like I was about to die. I didn't want to go to the emergency room because I already owed them $400, after the insurance company played their part.
In the morning, I felt fine, although even taking 3 steps winded me, and we realized I hadn't eaten for 3 days, and chalked it up to low blood sugar. In reality, low-blood oxygen crises tell your brain that death is imminent, and you get the signs and symptoms of diabetes, migraines, sleep apnea, and even psychosis, and the fact that I took my migraine meds, which include a vasoconstrictor for helping blood reach the brain and nowhere else, and then spent the time practicing deep breathing and meditation without moving ANYTHING not involved in breathing, probably kept me alive. The fact that my recurrent anemia has decided to take a break from not letting me have red blood cells also kept me alive...and that's dumb luck...that comes out of remission all the time. Nonetheless, the wife did not back down despite my new claims that everything was 'all better' and made the appointment (at my insistence, not an emergency one) for the Tuesday following the holiday.
Those people who read my tweets at 4am and the like on those days between O2 crisis #1 and the doctor's appointment, and who can read between the lines, will know I spent the next several days afraid to sleep because I was GOING TO DIE if I lost consciousness. When the chest pain got too intense, I'd take a half a moderate dose narcotic, which would reduce my blood oxygen level (making me feel worse) in the short term, but would confine me to sitting in bed or on the floor in the crash position, breathing deeply, and thus raising my blood oxygen level.
My doctor's appointment day began with the worst set of symptoms yet, and a wonderful, wonderful neighbor drove me there. Laying on my back, breathing with all the deep breathing capacity of a Wagnerian Mezzo-Soprano, with my WONDERFUL family doctor using WONDERFUL electronic records to review my sparkling clean ex-ray from Pneumonia Follies parte une, I told her, point blank, that I was not getting enough oxygen, and being a biologist, I felt like this was an anemia (we've dealt with Mr. A. Nemia before) or some other blood disorder, or my mitochondria were dying or something, and so she took my blood oxygen level, remember, as I am lying there, breathing deep, barely moving, and my saturation is a lovely 81%. Normal is approaching 100%, below 80% is getting intubated.
She promptly gave me my two choices: Be driven to hospital by neighbor who was still there or go in an ambulance with the pretty lights.
Walking from the neighbor's car to the ER, where I was expected, my blood oxygen level was now 74%. They allowed me to breathe on my own, even walk, because obviously MY body would handle low O2, probably because I *do* have some experience with dealing with low o2 in both skin diving and mountain climbing. Since I did not have panic attacks or headaches in the 70s, we've concluded I may've gone as low as 50% on those nights with the narcotics and vasoconstrictors... in short, yes, I may've died if I had fell asleep, after all.
Through the night, while I sucked O2 and got up to a whopping 86% on my own, they ran test after test that looked lovely. With the exception of high blood pressure, nothing could be found wrong with me. Heart healthy, actually beautiful blood work, gorgeous cholesterol and my new, slimmer weight moved me from the 'obese' category to the 'overweight' one, (which was always a silly distinction anyway, as I have a big fat belly but carry a muscle mass of almost 20%, which means that if I did not have short stubby legs, but had the same size hips, shoulders, etc, and a few more inches of height, I could look like a female wrestler...the real kind, not the show kind.)
Despite clear ex-rays, my chest CT showed the 'ground glass' effect, and we went with an assumption of either Diffuse interstitial pneumonitis or Extrinsic allergic alveolitis, which could've been caused by my often discussed umbrella cockatoo.
Biopsy of the lung, however, was inconsistent with these findings, and if you're playing House, the home game, this is where we concluded that it A. Was not Lupus and B. Was not Cancer.
In fact, the VERY high doses of steroids and broad spectrum antibiotics themselves were fixing me, again.- we played no games with this, as a former employee working in a research lab where *my* research was BSL2, but where I often worked with researchers skirting BSL3, and where I worked with DOD classified compounds with as-yet-unclassified safety levels, the hospital took me very seriously, which resulted in a lovely private room, and a bunch of blood sent to the CDC. You'll all be relieved to know I have neither Anthrax or SARS, by the way...can't find out about the MDR-TB, because the test for exposure to TB is invalidated by the steroids, but no sign of it in the lung biopsy.
Eventually, I was sent home, after 5 days in the hospital, WITHOUT A WORKING DIAGNOSIS...which is clearly unfun, as not just I but people like my MOM would probably like to know why I was in the hospital for five days getting biopsies and the like. I was clearly not contagious, as no one in my home or family had developed this, and I was sent home with an understanding that a flare-up in symptoms points to environmental causes, and no flare-up points to a hard to catch virus.
Like the patient who nearly dies after the too, too, early release in the first act of House, only to come back in the last act, I am now officially waiting for the change in scenery to do something to me, while we wait for labs and I have to return to the hospital for more CTs and maybe more biopsies in one week...
Until then, my fans, keep me in your hopes and prayers, and OUT of your episodes of House!
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