*removes spiderwebs*
It has been a long time since my last post. Why? It's called Major Depressive Disorder (MDD) that's been poorly managed. I become a hermit when my MDD is being poorly managed, online and real world. Don't feel bad, I was irrationally afraid to communicate with everyone, including my family. Living with MDD is a bitch.
First, it was trying to find a medication or combination of meds that would work. That didn't go so well and I ended up spending 3 days voluntarily inpatient in the psychiatric unit at a local hospital to get on different meds and somewhat stabilized. I was having a really bad day and leave it at that. Part of the problem was my insurance at the time, it didn't cover any psychiatrists in the Huntsville area, so my only choice for specialist care was inpatient admission. The doctors told me that if I needed any adjustment to my medications to just voluntarily admit myself again, since my insurance would cover inpatient psychiatric care 100%. No, it makes no sense at all; covering the more expensive care but not a physician in a local practice.
Had to change general practitioners (GP). Most of my meds had the "May cause drowsiness" warning on them, so I slept a lot. I asked my new GP if there was an anti-depressant that would not make me drowsy. Yes, there was a new one that fit the bill, that treated MDD and would not put me to sleep. Just the opposite, actually. Great, I'll take it. Which I have been for the past 2 years. One problem: no one told me that it should be taken with food or else 1/2 of the dose is lost in the digestive system. Oops. No wonder it stopped working so well, I was taking it on an empty stomach. I discovered this around 9/1/15, so almost two months ago now. So I spent most of September of this year adjusting to the effective doubling of my dose of meds. Yay, such fun when one's neurochemistry is being messed around with.
Then the first of this month rolls around and I'm dehydrated from having nausea and vomiting with a mild fever for 3 days and end up going to the ER on the October 1. What a way to break in my new insurance which went into effect that day. I was delirious at times, I was so low on fluids. A good friend/adopted family/neighbor (I'll call her Hera, in keeping with the Greek pseudonyms for people) took me to the ER since hubby was at work. Hera stayed with me until Evil Timmy (hubby, yeah, no Greek name for him) could get off work and meet me in the ER, then stayed a little longer to find out what the doctor said before she went home, despite how the chair had to be hurting her back (another story for another time). Long story short, yes, I was very dehydrated: 3 liters of fluid given in the ER and I couldn't keep anything down, despite all the Zofran I was given. Reglan finally stopped the vomiting, so if it took that drug, I was going to be admitted.
So testing for C. diff, which was negative, but landed me in contact isolation for about 24 hours while the test was being run. Contact isolation protocols mean that I was restricted to my room and anyone who entered first had to put on a paper gown and gloves before entering since C. diff is transmitted by touch. I was allowed out of my room once, at 5am for a CT scan, and I had to wear the gown and gloves outside my room. I was given two lap blankets to cover myself with in the wheelchair, and I got to keep those since they were potentially infected. I ended up with a lot of blankets by the end of my stay.
The morning I was scheduled for discharge I began to have double vision, vertically, which is pretty odd to see. The doctor on call was an ass, he dismissed my concerns about optic neuritis by telling me I needed to go see my optometrist (not ophthalmologist, who is a medical doctor specializing in the eye, but just get my glasses prescription adjusted). Now, I've had optic neuritis twice before so I know the symptoms, which include a sudden change in vision as the optic nerve becomes inflamed. The first time I wrote it off as needing a new prescription for my glasses, waited 4 days until my appointment with my neurologist, and got my butt chewed on for waiting so long since if the inflammation isn't immediately treated then there can be permanent damage and partial blindness. Lesson learned, don't screw around when my vision suddenly becomes abnormal.
The ass of a doctor wanted to send me home, and I'll admit, I became a bit emotional at the prospect of re-admission for IV medication treatment for my eyes. It was a Sunday and he said there weren't any specialists at Madison Hospital on the weekend. I said that Huntsville Hospital (HH, both are in the same hospital system) had neurologists on staff on the weekends and would he please call one of the neurologists and see what they wanted to do. Well, a HEMSI ambulance was called for me to be transferred to HH's Neurological Progressive Care Unit (NPCU, and doesn't that sound impressive). Screw you Dr. Asshole. Well, out of spite or something he ordered a psych consult for me while I was in HH because I was "overly emotional" or something like that. The psychiatrist said that it's perfectly normal to be terrified of going blind, especially for a visual artist. In other words, I had a normal, human reaction. Take that, Dr. Asshole, no I wasn't wanting to stay in the hospital just because I'm a hypochondriac or something like that. I just wanted to be sure I wasn't going to end up partially blind. No, I'm not bitter or anything.
An MRI of my brain and cervical spinal cord (neck) didn't show any lesions at this time, but that doesn't rule out the possibility of microscopic lesions that wouldn't show up. Another MRI of my eyes and optic nerves revealed no inflammation. The diagnosis? Multiple Sclerosis. Yep, back to MS as the source of my neurological problems. I'm going to be seeing a specialist in MS at Vanderbilt Medical Center in Nashville to try to figure out what's going on. I'll go up for an exam, then the doctors at Vanderbilt will coordinate with my neurologist in Huntsville so I don't have to keep going to Nashville for treatment. It will be January before I can get an appointment; they're booked that far out.
On the up side, a diagnosis of MS guarantees I'll receive disability benefits, which I'm in the middle of re-applying for. Hopefully I won't have to get a lawyer involved and I can keep all of my disability back-pay.
Next update - more of what's been going on, moving on from medical.
The photos show much better than I can describe what edema (retained water) from 19.8 liters of saline given over the course of a week when input > output looks like. That's 19.8 kilograms or 43.5 pounds of water, mostly accumulated in my legs. I'm wearing thigh-high anti-embolism stockings to provide compression for the edema, both to reduce the pain and the edema itself. After 4 days of not being able to eat and dehydration landed me in the ER in the first place. The same pen is used for scale.
Then I was given Lasix by my GP and I lost 40 pounds in 5 days! Wanna guess how? You probably guessed right. Ugh. And I had to keep my oral fluid intake at normal so I wouldn't get dehydrated again...
Oubliette - (noun, french) a little place of forgetting. A small, windowless room where someone is locked away, forgotten, left to go mad.
This is my personal place to rant and rave like the lunatic I am, my oubliette. It's dark, quiet, and I come here to forget about things. Or maybe to remember them. After all, where does insanity end, and insight begin?
Showing posts with label tl;dr. Show all posts
Showing posts with label tl;dr. Show all posts
Monday, October 26, 2015
Sunday, January 24, 2010
The Long Story
Where to start?
Those of you who know me from high school may remember that I was often sick. That was Crohn's Disease, which I've had since I was 9, and culminated in me requiring part of my intestine removed in the early spring of 93. After that, the disease went into remission, and I spend most of my early 20s in great health.
I moved to Huntsville, staying the summer, taking classes and getting a job instead of going home, which made me officially an Alabama resident. Damn it was nice how much tuition at UAH dropped.
By January of 1996 I had an Alabama EMT license as a result of one of my electives. So I joined the Huntsville Madison Rescue Squad and volunteered with them for a decade. I was on the Board of Directors for 2 terms and got to play with the big boys when I helped plan the Huntsville International Airports' Disaster Response Plan (a full scale drill of a crash landing, which is required by the FAA every 10 years for every airport).
During that time my back started to ache and get worse over the years. I also had a minor flare of the Crohn's, so I had all sorts of tests, and that's when it was discovered I had Rheumatoid Arthritis (RA) and Ankylosing Spondylitis (AS). The links will take you to the Wikipedia article for each, right click and open a new tab if to keep this one open.
The good thing is the treatment for Crohn's, the medications, also treat RA and AS.
During this time I met my EvilTimmy (hey, that's what my hubby calls himself online), and we got married 3 times and never divorced. First, we were married by Common Law (Alabama is one of the few Common Law states left) when I told Huntsville Hospital he was my husband, not my boyfriend or fiancee. The moment we presented ourselves as married, we were under Alabama law, which was in 1997.
EvilTimmy is an Engineer and I graduated with an Art Degree, specializing in Graphic Design. I was hired by a military contractor to work on the Redstone Arsenal, and hubby was hired by a different contractor. We both needed at least Secret level security clearances. So we went to the Courthouse, since while the government recognizes Common Law marriages, the Department of Defense does not. Marriage number 2.
One year later, to the day it turns out, we were able to get a venue for the wedding ceremony for our families, since most didn't know about marriages number 1 or 2. It turns out our anniversary is November 17 of 1997, 2000, or 2001 depending on who we're talking to. We've been married 10 to 13 years. No children since we decided early we didn't want any and it would be detrimental to my health to carry a fetus.
Then, one day in April of 2004, while I was at work, I had a horrible dizzy spell. I left work early, got home by luck and muscle memory so I didn't end up in a ditch. That was the first major symptoms of Multiple Sclerosis. While going through testing, I realized I'd been having minor symptoms for months.
Yay, even more meds. One med does start helping, I'm not having as many falls (my neurologist says I have to use a cane outside the house, and I mostly do), and my coordination isn't getting worse, at least.
But then comes the down side. It makes triggered an episode of paranoia and anxiety directed toward the computer. Not anyone on the computer, but the machine in general. I wouldn't fire up Photoshop, or get on the internet just to check the weather.
That's the last 15 years of my life, in a very large nutshell. Please don't take any offense if I don't respond to any comments, I may be having a bad day as far as the computer goes. Comment here or on Facebook, whichever you prefer. I only ask that here I'm Mira, regardless of what my Facebook name is.
Whew. That was a lot
Those of you who know me from high school may remember that I was often sick. That was Crohn's Disease, which I've had since I was 9, and culminated in me requiring part of my intestine removed in the early spring of 93. After that, the disease went into remission, and I spend most of my early 20s in great health.
I moved to Huntsville, staying the summer, taking classes and getting a job instead of going home, which made me officially an Alabama resident. Damn it was nice how much tuition at UAH dropped.
By January of 1996 I had an Alabama EMT license as a result of one of my electives. So I joined the Huntsville Madison Rescue Squad and volunteered with them for a decade. I was on the Board of Directors for 2 terms and got to play with the big boys when I helped plan the Huntsville International Airports' Disaster Response Plan (a full scale drill of a crash landing, which is required by the FAA every 10 years for every airport).
During that time my back started to ache and get worse over the years. I also had a minor flare of the Crohn's, so I had all sorts of tests, and that's when it was discovered I had Rheumatoid Arthritis (RA) and Ankylosing Spondylitis (AS). The links will take you to the Wikipedia article for each, right click and open a new tab if to keep this one open.
The good thing is the treatment for Crohn's, the medications, also treat RA and AS.
During this time I met my EvilTimmy (hey, that's what my hubby calls himself online), and we got married 3 times and never divorced. First, we were married by Common Law (Alabama is one of the few Common Law states left) when I told Huntsville Hospital he was my husband, not my boyfriend or fiancee. The moment we presented ourselves as married, we were under Alabama law, which was in 1997.
EvilTimmy is an Engineer and I graduated with an Art Degree, specializing in Graphic Design. I was hired by a military contractor to work on the Redstone Arsenal, and hubby was hired by a different contractor. We both needed at least Secret level security clearances. So we went to the Courthouse, since while the government recognizes Common Law marriages, the Department of Defense does not. Marriage number 2.
One year later, to the day it turns out, we were able to get a venue for the wedding ceremony for our families, since most didn't know about marriages number 1 or 2. It turns out our anniversary is November 17 of 1997, 2000, or 2001 depending on who we're talking to. We've been married 10 to 13 years. No children since we decided early we didn't want any and it would be detrimental to my health to carry a fetus.
Then, one day in April of 2004, while I was at work, I had a horrible dizzy spell. I left work early, got home by luck and muscle memory so I didn't end up in a ditch. That was the first major symptoms of Multiple Sclerosis. While going through testing, I realized I'd been having minor symptoms for months.
Yay, even more meds. One med does start helping, I'm not having as many falls (my neurologist says I have to use a cane outside the house, and I mostly do), and my coordination isn't getting worse, at least.
But then comes the down side. It makes triggered an episode of paranoia and anxiety directed toward the computer. Not anyone on the computer, but the machine in general. I wouldn't fire up Photoshop, or get on the internet just to check the weather.
That's the last 15 years of my life, in a very large nutshell. Please don't take any offense if I don't respond to any comments, I may be having a bad day as far as the computer goes. Comment here or on Facebook, whichever you prefer. I only ask that here I'm Mira, regardless of what my Facebook name is.
Whew. That was a lot
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