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...

time dilation and having the plague

So, as you might have guessed, the previous post is pretty much a month late. It's not that I wasn't completely thrilled by David's phone call, but days start running one into another seamlessly.

Then I had the Plague and I died. Then I got better and time continued to not really have any meaning to me. Oh, I see this blinding orb move across the sky, then a smaller one moves along the same path, but that has no relation to time. The day and night doesn't mean the date has changed.

And even better, I've started to notice "cognitive impairments", or what most people call "brain fog". I'm hoping that it is side-effects from the Neurontin, which I'm almost maxed out on. If it's not a drug side-effect, *sigh* I don't know. I'm still not sure if I want to know if the cognitive impairment is permanent. Maybe it would be better to not know.

Hell, I may be more impaired than I think. I wonder what my current IQ score is. It was...well above average before all of this started, and the test I took off the interweb at the time which was within one or two points of a professionally administered test when I was in first grade. (time passes) Uh, yeah. My current score isn't as good. Don't start with the older one is, the more unreliable the tests are, and you have to take the exact version, blah, blah, blah. I did want to finish writing this tonight, so I took one of the first tests I found.

Even more fun, I may end up going to the Mayo Clinic. That's another post, because it's the only way to keep on track. But it won't be tonight because I'm saying f*** it and going to sleep with Top Gear in the background.

the really short version

My neurologist put me on even more Neurontin 2 weeks ago and every, and I do mean every, time I sit down to do anything on the computer I fall asleep. The Neurontin is working great, but getting used to the side effects is taking a lot more time than I expected.

Damn, you have no idea how lucky I am to have been able to stay awake long enough to do this. I need to figure out how to use the computer while walking or something, because as long as I'm doing something active, I'm not falling asleep. It's only when I sit down that it kicks in.

time dilation strikes again

This is a perfect example of how I lose track of days. Without actually looking at the date of the last post, I thought it had been 3, maybe 4 days, tops since my last post. Definitely not a full week.

Yet another fun challenge of learning to live with MS.

Now, I wasn't exactly planning on writing War and Peace this past weekend since my in-laws were in town and CRAP! I've lost an earring. A very nice ear ring that was a gift. It's now time to play scavenger hunt.

...

Okay, found it. Not going to be wearing those ear rings around the house anymore. They're too nice to risk losing again and I'd have to go back to the hospital gift shop to replace them. So, yeah. I have a cheap pair on now that if I don't care much about. They're ear rings; they're plain silver hoops that have no sentimental value and little monetary value.

~~~

Back to living with the time dilation nonsense. I'm used to losing track of hours at a time; I'm an artist, it's pretty common for me to get into my work and suddenly have been at it for 8 hours and in desperate need of a stretch, a pee, and something to eat, not necessarily in that order. This is different, this is days at a time.

During the work week, when I'm home alone, I generally have no clue as to what day it is. I have to use post-it notes to remind myself to go to doctor appointments on the correct day, which usually works. Having the day of the week on the computer also helps, usually.

Then I'll have the other extreme: completely skipping a day in my head. I showed up at the Pain Center to pick up my Friday prescription on a Thursday. Swore it was Friday and what bites is I couldn't pick up my prescription until Friday since my doctor wasn't in to sign it. Plus it would have been considered an early refill if I had picked up on Thursday, and early refills are only allowed in extenuating circumstances, which forgetting which day it was wasn't.

My sleep schedule doesn't help, at all. I tend to sleep during the day, it's always been what works best for me. Unfortunately, I can't keep a daytime sleep schedule mostly because of doctors' appointments. Today is a prime example of that.

I couldn't drive Hubby into work since I had taken some meds that make me very drowsy for about 3 hours. So he drove himself in to work and I slept. In an hour or two we'll do a car-swap at lunch. He'll come and take me out for lunch then after lunch I'll drive him back to work. I'll go to the appointment with my GI by myself, and not on any meds that make me drowsy. Later in the afternoon, I'll go pick him up at work. Typical car-swap day for us and we have the procedure down to an art since we only have one car. We'll fix that once we pay off the current car loan, but not before because we don't need two car payments. Just no.

To top it all off, sleeping for 8 hours = new day, right? That's how I end up jumping ahead in the week. I went to sleep then woke up after several hours (not a nap, a real sleep), so it must be a new day. I thought it was Tuesday yesterday evening because I had just woken up from eight hours of sleep and was a little disoriented.

At least I'm no longer waking up and wondering what happened to my hospital room, why is the bed different, where are the windows, the is the TV mounted on the wall. It's sad when you don't recognize your own house.