And that's what I do. There is a pervasive myth that people on disability milk the system and have a ton of free time on their hands. It couldn't be any further than the truth. To be told, I use my calendar more now than I did when I was working - and I worked a lot and was on several committees towards the end of my working days.
Here's a real snippet of a conversation I had with my gastroenterologist this week. I love this man, by the way. He may be my favorite doctor yet, and you know how I love my rheumy.
Gastro: Elyse, I'd like to get you in for a CT scan in the next hour. Go find long term parking. Oh, and give me some samples (hands me a brown paper bag)
Elyse: Um, I have street parking and a handicap tag so I won't get towed.
Gastro: Damn, that's a sweet deal. I mean, I know you have all these things wrong with you but, free parking...
......a little while later....
Gastro: So I'm thinking Tuesday at noon for a colonoscopy.
Elyse: (looking at my calendar): Mmm, Tuesday is not going to work for me. And then I have chemo on Wednesday so that's out.
Gastro: What about Thursday?
Elyse: The day after chemo?
Gastro: Yeah, so? (and then stares me down. Hard.)
Elyse: with all due respect dr. gastro, i'm not gonna spend one day getting poison pumped up my veins and less than 24 hours have a camera shoved up my ass while I may or may not be puking.
Gastro: Good point. I'll have my secretary call you.
......all while he's dressed as Denzel Washington as the pilot in Flight. Even had the flask on the desk and I'm pretty sure at one point we were having a conversations with the aviator glasses on.
In any case, yeah. Then you fit in all the other specialists who are either working on you or have plans to - like the cardiologist who is just waiting until I finish chemo to start working on my heart issues. Then finding a new neurologist to work on the brain issue. The endocrinologist for the diabetes which is 95% under control now that I'm off the steroids, the pharmacy runs, the random body scannings and blood work. And that's just the actual care of the body. Then, if you're lucky, you have a therapist or psychiatrist to see on a regular basis, because this shit is depressing, applying for federal (ha!) benefits, running around to various offices when the state thinks you went back to work. Then there's life. Running errands. Cooking dinner. Doing laundry. Food shopping. And then there is the miscellaneous stuff like trying to write a book in a month, blogging, reading to keep up with the world, the timesuck that is Facebook, having a healthy marriage where we do stuff together, friends and get togethers, and occasionally go see a movie. I see the looks we get when we use a handicap space whenever we go shopping. What they don't know is that with my various organs in disarray there is a good chance that we may have to leave in a a hurry or I may not be able to walk much farther before I pass out.
We've all had that moment where the awkward friend says, "well, at least you can get your shopping done when it's not busy." Your pimp hand gets twitchy, but you stay it, while smiling nicely and saying, "well, there is that."
I'm not going to even attempt to explain why the concept of shopping at a peak hour if you're on pain killers so damn strong that I didn't know they let those things out of the hospital just to get some fruity pebbles and bacon bits (don't ask), so I'll just use these fun little graphics to illustrate some of what might be going on behind that bland smile.
Did I mention I have bills to pay? Obviously state disability doesn't cover my full former salary - we're looking at a decent double digit decrease, so I'm constantly balancing the budget depending on how many meds we added on that month and what tests are next up. Then WE (and yes, I speak collectively) spend hours on the phone with insurance companies trying to understand why one test was approved but a blood draw was not and HOLY HELL THE DUDE WHO CHECKED ME IN IS AN INDEPENDENT CONTRACTOR AND GETS PAID SEPARATELY??? WTF? AND THE ANESTHESIOLOGIST TOO?? AND REALLY, REALLY, THE BUTTERFLY NEEDLE USED TO DRAW BLOOD??
Then when you've screamed your voice raw, you pick up the kids, indulge in an alcoholic beverage and start homework. (I kid, I kid. Mikes Hard Lemonade, yo.)
Time to walk the dog but your legs don't want to work. Too bad because the dog is pissy (pun intended). and needs to go out NOW.
Then your spouse comes home and you actually want adult human contact that you haven't been fighting with all day!
Last minute homework (your own or your children), last minute cleanup up or whatever your nighttime routine includes. Pray pray pray that the nighttime insomnia, pain or nausea doesn't keep you up. If you want to do something for yourself - paint, draw, etc. it better be a flare day. Fall asleep, and do it again.
It's like a second full time job, being sick is. The amazing husband tells me that he's never met anyone who would willingly push through working, grad school and being sick out of sheer spite. Yeah, well, the universe hadn't met me yet.
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