This episode promises to meander somewhat.
I've decided to give myself an MD after my name. That's right, Mary Dell, MD.
NO! Not Medical Doctor--believe it or not, this isn't about my ego, and I don't pretend to know a fraction of what physicians and other health professionals know. I've been interested in a few very specific health conditions, since they have affected members of my family, and since I became a smorgasbord of chronic disease myself. I don't want their jobs. I don't like dealing with blood and guts. I like research, on anything at all, really, but since these medical problems keep plaguing me and folks I know (like all of us), that's what I'm researching these days. And, heck, I'm a bona fide medical librarian, so I know how to do it.
No, just call me Mary Dell, MD, for Medical Detective. And this is the Mary Dell Mystery Disease show. MD MD, MD--
Will that get me hired to consult for House? Ha.
This is about my latest theory on my multitude of bizarre health conditions and as-yet-undiagnosed signs and symptoms, currently in the hands of a cardiologist and a pulmonologist/sleep specialist, who I hope will figure out why I became so short of breath on stairs during my recent trip to Europe. Thank goodness, by the way, for those four flights up to my friend's place in Switzerland; I guess I've been taking too many elevators in the U.S., and that wasn't an option in her building. Otherwise I may never have realized how little I can now exert myself before being utterly exhausted and out of breath, not so much that I can't get enough air but that my legs want to give out under me; my body is drenched in sweat, and, well, I'm breathing really hard to get oxygen to all those parts of me clamoring for it.
FULL STOP. Okay, if you don't care to read about medical symptoms and theories of what is causing what down to the minutia of biochemistry, feel free to skip to the next episode. I never wanted to read or write about illness or health or anything relating to that--I wanted to read and write about Literature--and try to create some myself, in a very small way--but the Fates have bequeathed me with this wonderful array of medical mysteries to ponder in my spare time.
Some might say I'm obsessed and my research is making me have the symptoms I'm learning about, but I don't think I have the power to alter my biochemical lab results or the other results that bear out every frickin' condition I've been blessed with. What's interesting to me is not OH, POOR ME, but
WHY?? What is causing all this? No, I'm not worried about God's retribution for my sins or anything like that--I just want to know what's happening inside my body. Plain and simple curiosity, if nothing else, and sometimes it HELPS to know that there is a scientific reason I'm feeling like utter shit.
So, read on if you wish; if not, please skip to another, more cheerful topic in my blog--mushrooms, perhaps!
So, on with the Mary Dell Medical Mystery Show [which still could use some editing--I promise to tighten this up at some point]:
Results so far: Echocardiogram seemed to show hypokinesis--lack of movement in the heart--but subsequent testing said no. All X-rays and CT scans fine for both lungs and heart. Passed cardiac stress test in January with flying colors. Or, sort of, anyway. I was able to reach the heart rate they wanted me to. (I'll edit with actual results when I feel like getting out all of those lab results, but only if it appears anyone cares to know--this gal with full-blown attention deficit disorder has NO desire to do any extra paperwork. :) )
During the stress test, I wasn't really having trouble breathing, but my legs felt as if they were going to give out from under me. I told the technician, and I really had to hang on with my arms and hands to keep going. After the test, I was hyperventilating and felt faint, but they ushered me out for the next text on my diagnostic foray. I got as far as the registration office, where I was told to wait for a person who would walk me to the elevator across the lobby and up to the 3rd floor. It wasn't long before the room started to go gray around me, and I felt, again, as if my legs would give out, only this time the rest of me was going to give out, too. I tried to prop myself up, because I did not want to end up on the floor, and the staff pretty much ignored me when I asked for help, though admittedly I didn't ask for it in an urgent voice--I really do try to be nice, but going through such things is scary. I've since figured out that this is a symptom known as exercise intolerance.
Now, folks, I honestly do NOT like to make a fuss in hospitals, whether in a private room which DID happen in a spectacularly awful way in 2008 when my current symptoms apparently flared, and I landed in intensive care, was told I'd had at least two mild heart attacks and was in heart failure, and . . . oh, heck. I'm not going to meander that far. That episode will appear here someday--it's so outrageous I fear you won't believe me until you get to know me a little better-- and what I hope is a disproportionate number of examples of health care fiascos I've experienced (meaning I hope others out there aren't going through the same madness, though I suspect they are, and I have the advantage of good insurance and higher education and a job where I'm involved in health care every day).
I'm not dissing health care in general by any means--it's just that our system is out of control right now, and not everyone in it is suited for dealing with very sick and often distraught patients, I'm just sayin. Let me say, though, that health care has served me quite well in many cases, and for that I'm immensely grateful. I've been fortunate enough to have top endocrinologists and hematologists and other specialists, and I'm alive today because of those who have provided me excellent care. I have a primary care physician whom I've been seeing since 1996, so she knows me well, and she does not hesitate to send me to specialists when I have signs, abnormal labs, and/or compelling symptoms, and I don't mess around: I go to the best. (Aren't I fortunate to have health insurance, TRULY. Still, I pay a lot out of pocket toward my premium, and the private company, one of the best in reputation, is paying for less and less.
Since I don't think electronic health records (EHR) can ever be kept private, I figured I can testify here to what actually happened to me--it's certainly no worse than the "official" version, which is based on a bizarre encounter with a nurse who was on a power trip the night that I was taken to the emergency room in acute distress just a week after being admitted to intensive care and told by the staff cardiologist that I'd had at least two mild heart attacks and was in heart failure. I maintain to this day that the incident was purely physical--and I'm not ashamed of mental illness, so that's not a copout. I believe the story will speak for itself, so one of these days I'll get around to telling it.
EHR is an innovation I've never been crazy about, confirmed more dangerous than I'd imagined when a woman on Facebook, a friend of a friend in Facebook Speak, said she regularly volunteered at a local sheriff's department and spent her time there answering phones looking up the psychiatric records of everyone she knew. Which was no doubt everyone who lived in that small town.
Nightmare. I don't see how EHR can be stopped now, but forget about privacy, folks. Facebook, electronic health records, our online banking and recreational Web surfing, everything is stored away in databases galore, so let's stop kidding ourselves. Don't post anything to the Web you can't stand by because you will be linked to it, and don't count on the honesty and integrity of millions of health care workers and administrators and insurance executives to keep them out of your personal medical records any time at all. I realize I'm sounding a bit paranoid here, but who isn't these days?
But I refuse to let those fears govern my life. I have nothing to hide, even if I still haven't "come out" with my last name in this blog. I'll stand by anything I've written here, but I'd like to keep some modicum of privacy for my family members and friends, folks I do talk about from time to time here, which is why I'm leaving off my last name.
As for the electronic health records, they can't be changed once they are written in our blood in cyberworld; an addendum can be added if one disagrees with what occurred, but who the heck is going to look at that? So I am setting the record straight here on The Mary Dell Show. This is the true story, my true story, as I remember it, and [ego alert] I do have a fairly extraordinary memory, if I do say so myself, though others may claim it's flawed. (Seems to me many of my male romantic partners have had severe memory defects, but I don't want to start a gender war here! And, oops, "male partnerS"--TMI?)
Meander back, Mary Dell!
So, Medical Detective. I have given myself this honor after tracing a long trail through the Web and the professional medical literature, and I would bet my sacral sinus that I've got it figured out.
Oh, not exactly. That's what I mean. I have no pretensions as to practicing medicine or nursing or anything else I'm not qualified to do. I'm a medical librarian, though, and I am highly qualified to conduct my own personal systematic reviews of the literature and put a picture together that finally, at last, seems to explain it all in one lovely nutshell.
A nutshell that has been cracked open with a big old nutcracker at this point, I'm afraid--meaning, I'm falling apart.
Oh, I'm not saying every little ache and pain is related to this particular discovery. But the things that are plaguing me--over-sleeping (hypersomnia)--I can sleep for 17-24 hours at a clip more often than even I can believe, and always have trouble waking--shortness of breath/exercise intolerance, sleep apnea, etc., etc., could very well be related to each other.
So what am I talking about?
After doing a ton of research--and I mean a ton, folks, though in retrospect it all seems so obvious--since getting back from Europe in January, I've been on the trail of whatever it is that is making me so breathless and exhausted. Yes, sleep apnea probably is related, and perhaps the polycythemia is related to that, but other problems have undoubtedly been caused by something else; as my friend poet Stephen Dunn always says, there is rarely an overarching answer to anything (I paraphrase broadly here). Actually, Stephen would probably say there never is.
Anyway, my hours of research finally revealed that my symptoms add up to a pattern that suggests dysautonomia, possibly from a congenital condition or maybe even a mild expression of a syndrome that runs in families, though perhaps only mildly in mine, for the most part. As I read recently (I'll find the citation, I promise!), all disease has elements of dysautonomia--the disregulation of the central nervous system's "automatic" functions. For more information from the National Institutes of Health, go here: http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm.
Likely culprits for these disorders are problems with the brain/spinal column, along with infectious, endocrine, blood, and other disorders. Let's face it, our bodies and minds are a system, and they work well for some of us and less so for others. But we're all made to break down. We're like the cars manufactured in the 1960's, which my dad told me were designed to self-destruct (pretty much) just as the typical car loan was paid off. Gotta keep those car executives fat and happy, so let's make those Americans happy Americans with shiny new Chevies or, in my family's case, Buicks, so they can look good cruising across the U.S. on an iconic family vaction. Fact. Future episode, and it's a good one, the parents and siblings in a station wagon heading out West where the just-turning-seven-years-old-huge-Bonanza-fan-with-crush-on-Michael-Landon Mary Dell was determined to find a cowgirl outfit for her birthday.
Okay, so here are my signs and symptoms, in order of occurrence, and they go way back which makes me think I might, indeed, have some sort of congenital or early-onset neurological syndrome that explains why I feel like a woman of 80 years old even while appearing like a fairly well preserved 53-year-old (which is difficult to explain to a boss and coworkers, but I'm fortunate enough to have the best of both):
I've decided to give myself an MD after my name. That's right, Mary Dell, MD.
NO! Not Medical Doctor--believe it or not, this isn't about my ego, and I don't pretend to know a fraction of what physicians and other health professionals know. I've been interested in a few very specific health conditions, since they have affected members of my family, and since I became a smorgasbord of chronic disease myself. I don't want their jobs. I don't like dealing with blood and guts. I like research, on anything at all, really, but since these medical problems keep plaguing me and folks I know (like all of us), that's what I'm researching these days. And, heck, I'm a bona fide medical librarian, so I know how to do it.
No, just call me Mary Dell, MD, for Medical Detective. And this is the Mary Dell Mystery Disease show. MD MD, MD--
Will that get me hired to consult for House? Ha.
This is about my latest theory on my multitude of bizarre health conditions and as-yet-undiagnosed signs and symptoms, currently in the hands of a cardiologist and a pulmonologist/sleep specialist, who I hope will figure out why I became so short of breath on stairs during my recent trip to Europe. Thank goodness, by the way, for those four flights up to my friend's place in Switzerland; I guess I've been taking too many elevators in the U.S., and that wasn't an option in her building. Otherwise I may never have realized how little I can now exert myself before being utterly exhausted and out of breath, not so much that I can't get enough air but that my legs want to give out under me; my body is drenched in sweat, and, well, I'm breathing really hard to get oxygen to all those parts of me clamoring for it.
FULL STOP. Okay, if you don't care to read about medical symptoms and theories of what is causing what down to the minutia of biochemistry, feel free to skip to the next episode. I never wanted to read or write about illness or health or anything relating to that--I wanted to read and write about Literature--and try to create some myself, in a very small way--but the Fates have bequeathed me with this wonderful array of medical mysteries to ponder in my spare time.
Some might say I'm obsessed and my research is making me have the symptoms I'm learning about, but I don't think I have the power to alter my biochemical lab results or the other results that bear out every frickin' condition I've been blessed with. What's interesting to me is not OH, POOR ME, but
WHY?? What is causing all this? No, I'm not worried about God's retribution for my sins or anything like that--I just want to know what's happening inside my body. Plain and simple curiosity, if nothing else, and sometimes it HELPS to know that there is a scientific reason I'm feeling like utter shit.
So, read on if you wish; if not, please skip to another, more cheerful topic in my blog--mushrooms, perhaps!
So, on with the Mary Dell Medical Mystery Show [which still could use some editing--I promise to tighten this up at some point]:
Results so far: Echocardiogram seemed to show hypokinesis--lack of movement in the heart--but subsequent testing said no. All X-rays and CT scans fine for both lungs and heart. Passed cardiac stress test in January with flying colors. Or, sort of, anyway. I was able to reach the heart rate they wanted me to. (I'll edit with actual results when I feel like getting out all of those lab results, but only if it appears anyone cares to know--this gal with full-blown attention deficit disorder has NO desire to do any extra paperwork. :) )
During the stress test, I wasn't really having trouble breathing, but my legs felt as if they were going to give out from under me. I told the technician, and I really had to hang on with my arms and hands to keep going. After the test, I was hyperventilating and felt faint, but they ushered me out for the next text on my diagnostic foray. I got as far as the registration office, where I was told to wait for a person who would walk me to the elevator across the lobby and up to the 3rd floor. It wasn't long before the room started to go gray around me, and I felt, again, as if my legs would give out, only this time the rest of me was going to give out, too. I tried to prop myself up, because I did not want to end up on the floor, and the staff pretty much ignored me when I asked for help, though admittedly I didn't ask for it in an urgent voice--I really do try to be nice, but going through such things is scary. I've since figured out that this is a symptom known as exercise intolerance.
Now, folks, I honestly do NOT like to make a fuss in hospitals, whether in a private room which DID happen in a spectacularly awful way in 2008 when my current symptoms apparently flared, and I landed in intensive care, was told I'd had at least two mild heart attacks and was in heart failure, and . . . oh, heck. I'm not going to meander that far. That episode will appear here someday--it's so outrageous I fear you won't believe me until you get to know me a little better-- and what I hope is a disproportionate number of examples of health care fiascos I've experienced (meaning I hope others out there aren't going through the same madness, though I suspect they are, and I have the advantage of good insurance and higher education and a job where I'm involved in health care every day).
I'm not dissing health care in general by any means--it's just that our system is out of control right now, and not everyone in it is suited for dealing with very sick and often distraught patients, I'm just sayin. Let me say, though, that health care has served me quite well in many cases, and for that I'm immensely grateful. I've been fortunate enough to have top endocrinologists and hematologists and other specialists, and I'm alive today because of those who have provided me excellent care. I have a primary care physician whom I've been seeing since 1996, so she knows me well, and she does not hesitate to send me to specialists when I have signs, abnormal labs, and/or compelling symptoms, and I don't mess around: I go to the best. (Aren't I fortunate to have health insurance, TRULY. Still, I pay a lot out of pocket toward my premium, and the private company, one of the best in reputation, is paying for less and less.
Since I don't think electronic health records (EHR) can ever be kept private, I figured I can testify here to what actually happened to me--it's certainly no worse than the "official" version, which is based on a bizarre encounter with a nurse who was on a power trip the night that I was taken to the emergency room in acute distress just a week after being admitted to intensive care and told by the staff cardiologist that I'd had at least two mild heart attacks and was in heart failure. I maintain to this day that the incident was purely physical--and I'm not ashamed of mental illness, so that's not a copout. I believe the story will speak for itself, so one of these days I'll get around to telling it.
EHR is an innovation I've never been crazy about, confirmed more dangerous than I'd imagined when a woman on Facebook, a friend of a friend in Facebook Speak, said she regularly volunteered at a local sheriff's department and spent her time there answering phones looking up the psychiatric records of everyone she knew. Which was no doubt everyone who lived in that small town.
Nightmare. I don't see how EHR can be stopped now, but forget about privacy, folks. Facebook, electronic health records, our online banking and recreational Web surfing, everything is stored away in databases galore, so let's stop kidding ourselves. Don't post anything to the Web you can't stand by because you will be linked to it, and don't count on the honesty and integrity of millions of health care workers and administrators and insurance executives to keep them out of your personal medical records any time at all. I realize I'm sounding a bit paranoid here, but who isn't these days?
But I refuse to let those fears govern my life. I have nothing to hide, even if I still haven't "come out" with my last name in this blog. I'll stand by anything I've written here, but I'd like to keep some modicum of privacy for my family members and friends, folks I do talk about from time to time here, which is why I'm leaving off my last name.
As for the electronic health records, they can't be changed once they are written in our blood in cyberworld; an addendum can be added if one disagrees with what occurred, but who the heck is going to look at that? So I am setting the record straight here on The Mary Dell Show. This is the true story, my true story, as I remember it, and [ego alert] I do have a fairly extraordinary memory, if I do say so myself, though others may claim it's flawed. (Seems to me many of my male romantic partners have had severe memory defects, but I don't want to start a gender war here! And, oops, "male partnerS"--TMI?)
Meander back, Mary Dell!
So, Medical Detective. I have given myself this honor after tracing a long trail through the Web and the professional medical literature, and I would bet my sacral sinus that I've got it figured out.
Oh, not exactly. That's what I mean. I have no pretensions as to practicing medicine or nursing or anything else I'm not qualified to do. I'm a medical librarian, though, and I am highly qualified to conduct my own personal systematic reviews of the literature and put a picture together that finally, at last, seems to explain it all in one lovely nutshell.
A nutshell that has been cracked open with a big old nutcracker at this point, I'm afraid--meaning, I'm falling apart.
Oh, I'm not saying every little ache and pain is related to this particular discovery. But the things that are plaguing me--over-sleeping (hypersomnia)--I can sleep for 17-24 hours at a clip more often than even I can believe, and always have trouble waking--shortness of breath/exercise intolerance, sleep apnea, etc., etc., could very well be related to each other.
So what am I talking about?
After doing a ton of research--and I mean a ton, folks, though in retrospect it all seems so obvious--since getting back from Europe in January, I've been on the trail of whatever it is that is making me so breathless and exhausted. Yes, sleep apnea probably is related, and perhaps the polycythemia is related to that, but other problems have undoubtedly been caused by something else; as my friend poet Stephen Dunn always says, there is rarely an overarching answer to anything (I paraphrase broadly here). Actually, Stephen would probably say there never is.
Anyway, my hours of research finally revealed that my symptoms add up to a pattern that suggests dysautonomia, possibly from a congenital condition or maybe even a mild expression of a syndrome that runs in families, though perhaps only mildly in mine, for the most part. As I read recently (I'll find the citation, I promise!), all disease has elements of dysautonomia--the disregulation of the central nervous system's "automatic" functions. For more information from the National Institutes of Health, go here: http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm.
Likely culprits for these disorders are problems with the brain/spinal column, along with infectious, endocrine, blood, and other disorders. Let's face it, our bodies and minds are a system, and they work well for some of us and less so for others. But we're all made to break down. We're like the cars manufactured in the 1960's, which my dad told me were designed to self-destruct (pretty much) just as the typical car loan was paid off. Gotta keep those car executives fat and happy, so let's make those Americans happy Americans with shiny new Chevies or, in my family's case, Buicks, so they can look good cruising across the U.S. on an iconic family vaction. Fact. Future episode, and it's a good one, the parents and siblings in a station wagon heading out West where the just-turning-seven-years-old-huge-Bonanza-fan-with-crush-on-Michael-Landon Mary Dell was determined to find a cowgirl outfit for her birthday.
Okay, so here are my signs and symptoms, in order of occurrence, and they go way back which makes me think I might, indeed, have some sort of congenital or early-onset neurological syndrome that explains why I feel like a woman of 80 years old even while appearing like a fairly well preserved 53-year-old (which is difficult to explain to a boss and coworkers, but I'm fortunate enough to have the best of both):
- Hypothyroid due to multiple hyperplastic thyroid nodules (recent CT scan and lab tests)
- Moderate sleep apnea (average of 17 apneas/hypoxias per hour based on recent sleep study)
- Chronic kidney disease (confirmed by Hopkins nephrologist)
- GERD with mild hiatal hernia revealed on barium swallow (and symptoms)
- Dyspnea (shortness of breath); cardiac and pulmonary tests mostly normal, though some abnormalities have "controversial" contributions to heart disease, and my cardiologist has already told me he believes my heart is "slowing down sometimes" (bradycardia), which is consistent with a disregulation of the autonomic system, which controls heart rate, breathing, all those "automatic" things our bodies do while we're not paying attention. We pay attention, believe me, when they don't work as advertised.
- Limited Granulomatosis with Polyangiitis (Wegener's Granulomatosis) in sinuses and nose, with septal perforation (I swear, I only did cocaine a few times in the 1980's--and didn't everyone do at least a little cocaine in the 80's?), sinus cysts/polyps (hopefully; they've never been biopsied); thickened sinuses, etc., etc. So far, apparently no lung or kidney involvement, thank goodness, and I'm not utterly convinced I actually have Wegener's at all, though I'm pretty darned sure I have some sort of vasculitis, and the nose is a typical target, with its tiny blood vessels. So are the eyes and the orbit, and my vision has majorly deteriorated as well over the past year or so, and I need to get to an eye doctor. Sheesh, I need a personal secretary to keep track of all my [censored] medical tests and appointments; and ADD, by the way, is also correlated with dysautonomia, and since all these symptoms got so crazy in the past decade my ADD is off the charts. However, regarding Wegener's, I did not test positive for ANCA antibodies, which are present in nearly all persons with this condition, but I imagine these symptoms could well be brought on by issues related to the dysautonomia as well.
- Polycythemia (hematocrit in high 40's up to 52 beginning in 2010 and to date; hemoglobin also elevated to 16.5 or 17; platelet counts normal). Thus far the cause is undetermined, but it seems the sleep apnea may be it--I'm awaiting my sleep specialist's analysis of my CPAP test, and I hope to high heaven the insurance company decides to give me one this time, as I went through all of this and was turned down because the apnea was "too mild," even though I was having symptoms of oxygen problems and the CPAP had cleared up that "mild" case of stopping breathing while asleep, but that's another "Down the Rabbit Hole" episode--my, they are piling up, aren't they?
- Hypersomnolence. This began after what I believe was an earlier flare up of my condition, whatever it is, in 2008. I never got my energy back after that fiasco down the Rabbit Hole--and I mean way, way, way down that rabbit hole, our current medical system. It has become nearly debilitating; if I weren't allowed to have certain accommodations to my schedule at work, I would not be able to do what I do, and that's very scary. Very likely the sleep apnea, hypersomnolence, and even the polycythemia are related. Oh, did I mention the cardiologist (not my personal one) who did the stress test told me my heart looked fine, "but there's something going on with your oxygen." However, this isn't explained in any way I can fathom in his report, so that's mere hearsay, but that's what he said. And they still let me walk to my next appointment, the one I didn't make it to because I almost fainted. And when I finally was brought a wheelchair and was taken back to the cardiac lab and my blood pressure was taken, the nurse asked me if I had blood pressure problems. I honestly can't remember if it was high or low (my brain wasn't functioning at its best at the time, despite my previous assertions of an excellent memory :) ) but she went to talk to the folks in the tech room, and they just let me lie there until it normalized (pretty sure it was high) and my heart stopped feeling as if it were going to jump out of my chest, and then they took me by wheelchair to my pulmonary function test on the third floor. I'm ashamed to admit I used the dreadful "M" word when no one responded to my request for help because I felt as if I were fainted--I'll let you figure out that one--but I really did not want to crack my head open on the tile floor. Maybe if I had, we'd know what the heck is wrong with my brain, but then I'd be dealing with head trauma!
- Bilateral adrenal hyperplasia with left (non-functioning? That was never actually checked) adenoma. This condition originates in the pituitary gland, which secretes too much CRH, which triggers too much ACTH, which then triggerts too much aldosterone, a steroid secreted by the adrenal glands. Too much aldosterone leads to excess sodium retention and, often, hypokalemia (low potassium) in the blood. Those electrolytes are extremely important to how one's body works, and the condition, known as primary hyperaldosteronism, does long-term harm to the cardiovascular and renal systems. Hence, my CKD, et al.
- Hepatitis C. This is another risk factor for dysautonomia, and though I apparently have very little liver involvement (though my last biopsy was nearly 5 years ago), I do have a very high viral load. The condition wasn't even known as an actual virus (HCV) until 1989, and when my kids were born in the early 80's blood was not screened for it since no one even knew what it was. It can only be transmitted with blood-to-blood contact, and after my first son was born (with multiple complications--another episode and more fodder for my dysautonomia theory--two abnormal pregnancies, one with a cranial disorder called craniosynostosis that seemed to come out of nowhere, but perhaps may actually have been fermenting in the gene pool all along, as I hope my research will bear out. I don't know why it matters what caused it--I was a diligent mom-to-be, even forcing myself to eat breakfast every morning, and back then I was a practicing Mormon so I didn't have any alcohol or coffee or caffeinated drinks. After my first baby, a preemie all of 3 pounds 13 ounces later diagnosed with the said craniosynostosis along with left hemparesis (weakness or semi-paralysis) due to an apparent "stroke" while in utero, during his 26 days in the Isolette (incubator), or in his early days home, which started when he was 4 pounds, 12 ounces. I didn't know I had Hepatitis C until c. 2002, when I finally got up the nerve to give blood to the Red Cross and received a fat letter with a bunch of lab results saying my blood contained the HCV virus.
- Severe hypertension, uncontrolled for 13 years despite being on up to 4 medications at a time; mostly resolved after starting on spironolactone for the adrenal hyperplasia.
- Two troubled pregnancies and births (but two FANTASTIC sons): I will fill in with more details later.
- Amblyopia due to stabimus, diagnosed in first grade with a school vision test.
- Severe dydration at 18 months requiring three days of hospitalization quarantined in a nursery--I'm convinced a lot of my "mental" issues could be traced to this traumatizing event, which my mom described to me numerous times--she'd be allowed to wave to me from a little window in the door, and I tried to climb out and screamed and everything you'd expect an 18-month-old infant to do when it's sick and wants its mom, but I despaired, apparently, to the point that I wouldn't even go to my mom when I was released, but went straight to her best friend instead, and I'm pretty sure that's part of the reason my mom kind of spoiled me and let me have my way perhaps too often--not only because I was the youngest child.
- Sacral dimple and sinus (this is a very embarrassing sign of spinal cord development problems, and it's been mortifying to deal with my whole life, but I now do think it's an important clue so I can't leave it out.)
Another genetic mix-up runs in the males in our family, and though it apparently has nothing to do with the brain stem, which is where I think most of my problems originate, I can't help but think one genetic weakness might coincide with others.
Now, the question is: Have I had some sort of abnormality in my brain and/or central nervous system my entire life? Or are these increasingly debilitating symptoms a result of the Hep C? Or something else? Well, thank goodness my PCP finally referred me to a neurologist--I can't wait until August 1.
So, in addition to my first son's being born with craniosynostosis, a skull abnormality that is associated with a number of identified syndromes (for more information on craniosynostosis, go here: http://www.mayoclinic.com/health/craniosynostosis/DS00959), these medical signs and events may or may not be related to whatever is going on, but I'm putting my money on yes.
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