one year with crohn’s

yup. it’s been approximately one year since i first got sick and though i know it was sometime in august, i never imagined it was something i would spend the rest of my life with, so i never committed to memory the exact date.it’s been an interesting year in terms of both learning about and how to manage the disease, but also in getting diagnosed and receiving monthly medication without health insurance.

i’ve managed to find a place to get my prescription filled without it costing me an arm and a leg (no, not on the black market) and so far i haven’t had to pay for my visits to the GI doctor. hawaii has some of the lowest medically uninsured rates in the nation, thanks to the pre-paid health care act, but if you’re unemployed here, as in most places in the country, you’re screwed. trying to get a potentially deadly illness diagnosed when you don’t have health insurance is, to put it mildly, frustrating. for the first couple of months, i was playing trial and error with a very diligent physician’s assistant at a local community clinic, but when all her ideas proved fruitless, i was forced to spend nearly $800 on a CAT scan (i think that’s what it was), only to have it whittle down the possibilities to crohn’s or cancer, at which point i was forced to find a specialist, which included a consultation with a surgeon. fun stuff.

during all this time, i had an application pending with medicaid and only after i got a note, literally, from the surgeon, was my application processed and approved for what’s called “quest ace.” ironically, i think of it as the poor man’s medicaid. it covers my check-ups with the GI doctor, but that’s about it. it doesn’t cover any tests, any procedures, and unless i have an ear infection or want to avoid getting pregnant, it doesn’t cover my medication. ultimately, it all worked out reasonably well, but i’m putting of getting some blood work done until i have some spare cash. really, i’m hoping to find a job (and health insurance) before my next appointment, so i don’t have to pay for it at all.

ultimately, i think it’s all worked out, for the most part. the medication works quite well and though i still have times when i don’t feel great and i try to watch what i eat, i’m able to function normally again. i’ve managed, for better or worse, to gain back most of the weight i’ve lost, though i think i might have finally plateaued under where i was when i first got sick, which isn’t a bad thing.

it’s strange to think it’s already been a year. anniversaries, i think, force us to contemplate the past and this unfortunate anniversary is no different. it’s been a surreal experience and though there were a couple of times when i was truly worried and scared, like when i thought it might be cancer, for the most part i was always fairly confident it would all be fine. it wasn’t until after i started taking the drugs and began to feel better that i learned my father and stepmother, a doctor and nurse respectively, were genuinely worried, which forced me to wonder if i had been a little too nonchalant about the whole ordeal.

at this point, i think the worst part is the reality that i will have to take two pills, three times a day, for the rest of my life. not to mention vitamin supplements. and that i’ll have to forever watch what i eat and know that, no matter what, i’m going to have bad days. still, i try not to complain much…. it could have been cancer.

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