That wouldn't be a bad idea. Probably useful later for tracking flares and stuff too.
Anyway, currently I'm working for two different companies that focus on the developmentally disabled.
In one place I'm working with 1 to 3 other people at any given time taking care of a group home with 7 guys in it. Males aren't allowed to work anywhere near a female (we're all incapable of retraining our manly urges to rape females supposedly). Females can work with anyone despite the fact that all the sexual trouble this company has had has been between male clients and female staff. This results in the creation of all-male houses so that male staff have at least one place we're allowed to work. Of course females get preference when competing for job openings in the male group homes too.
Most of the guys are non-ambulatory meaning they can't walk, and all but 1 are incapable of speech, and he's blind. Most of the work is lifting people between wheelchairs and beds, giving showers, and cleaning up crap since all but 1 wear depends and that guy really should be but the other staff have proven their inability to change him on time because of his constant combativeness (he's most likely experiencing some depression and dementia).
For the other agency I take care of a teenage male who has muscular dystrophy. That means his muscles do not work (because they're so weak) below his neck other than his fingers. This guy lives with his family who take care of him the majority of the time. Well, more his mother does everything.
I get to go to prom tonight by the way. I'm working extra because his mother thought it best she not be the one who goes. It's totally uncool to go to prom with your mother.
I'm 23 and I never even went to my own prom (I was kicked out of school my junior year because my crohn's disease was ruining their attendance statistics and they were afraid of 'no child left behind'.) so I expect this to feel extremely awkward.
For the teenager I do everything. Every single day to day movement of his body I do for him. When he rolls over at night it's my muscles doing the pushing. When he scratches his head it's my muscles that lift his arm. Oh, and he's 210 pounds. Being unable to move your muscles has a tendency to reduce the amount of exercise you get and he eats like a normal person.
Considering I'm in a flare up you can imagine what this work is doing to my body. Even for someone who is healthy this is completely draining and bruising work. I've been working with him for about a month now and I've been in a rapid decline the whole time. On top of that his mother is very observant and knows I'm not holding up to it very well. This causes some major problems in that not only do I have to hear her sympathy and concern all the time which embarrasses me because I usually think I'm succeeding in my efforts to hide my illness, but I know she's got to be thinking all the time about how I'm not fit to take care of her son. That's always my major worry. That I won't be able to hold a job because I'm not capable of doing the work properly, which is legal to deny me a job for.
The group home has it's own set of problems in that I've got other employees around all the time watching me and constantly complaining to my supervisor if I show the slightest amount of weakness. To them, if I'm not the one doing all the work they have to pitch in, and that's just not right. This drives me to work exceptionally hard there too.
In all I've pretty much reached my limit. I called in sick last night and of course the staffing coordinator had to grill me on exactly what was wrong with me. I'm weak, miserable, and not exactly in a good mood to toss into the gossip factory at work that I've got diarrhea and I'm spewing blood out my ass.
Possible relief is in sight though. I've already put my notice in at both places. I'm moving at the end of this month (April) so that my wife can finish her degree. The bad part here is that I don't know where I'll be working when I get there. It could be better or worse. Regardless it's still completely up to me to support my family for the next 2-3 years.
I looked into free clinics in the area and found 2. I haven't seen a doctor in about 6 years though and my medical records are all long gone so while I could finally get some treatment I'm terrified of being run through all the tests all over again. Even then, how much is the free clinic going to pay for when it comes to testing. It's one thing to give someone a free doctor visit, but colonoscopies and maybe even surgeries?