Monday, October 26, 2015

a lot of things happen in five years - medical

*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...

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