Now what?: part four

Picking up where I left off in part three, a huge consequence from this disease is that I’ll possibly have to curtail – or stop altogether – things that I enjoy doing, and consider part of my lifestyle. Running is one such thing; I’ve had some painful runs already (and good Lord, I mean bouts of exercise, not the other kind – !), and have powered through them, but I wonder what will happen if/when/I hope if I’m out for a run and have to stop altogether. Skiing is another such thing, and a pretty big one; I knew this was going to be one of the first things to go because my medical bills quickly made it quite clear that I was going to have room in my budget for only one of two things*: skiing, or figuring out what was wrong with me, and as much as I am defined in the winter by my ability to drive over to the mountains and throw myself down them on two wooden sticks, I knew that it was only practical to choose the knowing what was wrong with me. What hasn’t been easy is explaining to people why I can’t make it out on a given weekend, or why they really shouldn’t expect to see me at all this season; I’ve been avoiding it, and just mumbling something about “oh, I have something else planned” or “I have to work”. It’s disappointing, and it sucks.

Those last couple of sentences could also apply to my social life as well. I’ve now got to think about social situations in the context of “where’s the nearest bathroom?” and “are we doing something my stomach can tolerate?” and “what do I do if something goes wrong very quickly?”. That, and I can’t really stay out very late anymore, because I have to be home to take my medicine before I go to bed [this is non-negotiable according to the directions of the medication, and I don’t dare test it because, okay, you try waddling around your day with a magic bullet up your bum and not let it drop for at least 3 hours. Let me know how that goes, eh?], and getting the right amount of sleep is crucial – when my iron levels are low, again usually around my period, I get exhausted very quickly, and start to be unable to function. Getting enough sleep on a regular basis usually helps me avoid this, but when you’re a night owl like I am and have been known to try to persuade people to stay out for just one more round, it starts to get hard to tell people that you’re sorry, but you have to turn in at 10:00 or 11:00.  It’s frustrating, because I like hanging out with people, and I like being able to stay out a little if I want, and now I’ve got to look at every potential social situation through this new lens.

One logical question from all of this is the very natural “why me?”. Sure, I could lose myself in self-pity, wondering why someone my age who’s in the best shape of her life and is otherwise healthy is the person who gets hit with this disease. Why not some housebound misanthropic hater of meat and cheese who’s counting the days until he bites the dust anyway?** I could go on and on, but I decided early on in this process that it’s just a fruitless pursuit. You know the saying “shit happens?” I’ve just become the living epitome of it. To find it anything other than hilarious and absolutely dealable-with would be antithetical to who I am, so, I’m just not going to waste time on it.

I don’t want to come across as whining about any of this, especially since I know that there are folks out there who have diseases and situations much worse than mine. I’m really just trying to come to terms with what having a chronic disease means, not just in the physical realm but also in the psychological realm. I feel like that‘s the part that gets left out and buried and not talked about, and it’s a way for me to work out how well I’m coping at a given time. I’ll try to provide some cheese, too, to go with said whine if you like. But I warn you, it may be of the very-freshly-cut variety.

*I belong to my university’s outdoors club, and we get a very nice discount on student season passes at a resort a few hours away. I’ve met many friends – and strengthened relationships with friends I already had – on skiing and boarding trips  over the past few years, and it’s just sort of assumed that those of us in the group left in town will get a pass every year. Until this season, I was one of those people; when the snow was good, I’d be out there every weekend possible. I’m sort of glad that the snow this season hasn’t been that great, but I’d be lying if I said I didn’t miss it, because I do.

Pursuant to this, do you have any idea how much health care costs these days? Oh my gawd, I’ve been nearly set to faint every time I get a bill from the clinic. “You want to charge me HOW MUCH for sticking that tiny little tube up WHERE?!” And then I start breathing properly and re-read the bill and realize that I am one lucky [insert expletive here] because the four-digit number is what the total cost is that has been submitted to my insurance company, who will be happy to foot upwards of 85% of the bill. I’m still playing the waiting game on the bill for the colonoscopy; I’m taking bets on what the first of the four digits of that one will be, so email me if you want in. But – I’m appalled, frankly, at what people are being charged for these services. I can’t even begin to imagine what I would do without insurance – actually, no, I do know: I never would have gone to get this checked out in the first place. Wow. It makes me really, really angry at turns, that this is the sort of thing we can’t make affordable as a nation. Ooooh, I’m getting the angry goosebumps thinking about it, so I’ll just thank my lucky stars again that a) I even have health insurance and b) it is paid for as part of my graduate school package. I am fortunate, I am.

**My apologies if you actually know – or, um, are – someone like that. Oops. (But if you are and I don’t know you, can I meet you? I want to ask you some questions…)

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