Last month my normally indomitable dad got real sick with a bad chest infection. In the first case, this man who seems to exercise just as much as he sleeps, rarely gets sick. In the second, when he does get sick he usually gets over it real fast. This time that didn’t happen. He had to go on antibiotics and a bronchodilator (which he didn’t use much because it made him feel weird), miss work, and feel real lousy for a couple weeks. During this time we were having a text conversation- extended in time but limited in word count as is our way- and he said something that gave me a Loki moment: “Being sick is hard work!”
Now I was certainly not happy that my pops was so sick, but it was nice to feel understood by my nearly super-human dad. Being sick IS hard work. But that’s a hard thing to understand unless you’ve experienced it–which is why it’s so hard for healthy individuals to understand what life with chronic illness is really like. They wonder why some people with chronic illness can’t work, or if they can, only part-time; they think it laziness or *shudder* “fun” to spend the day in bed; they don’t understand when we can’t exercise, why we’re always so tired, or why we need so much rest… the list goes on and on. But luckily my dear-old-dad has the answer to them all–being sick is hard work!
Chronic illness is often a full-time job in itself.
A day in bed because of pain/sickness is by far more exhausting than a normal day up and about, and is NOT fun.
Dealing with constant pain/illness is exhausting. Ex. Haust. Ing.
Oh yeah and did I mention? Being sick is hard work!
It drives me crazy (somewhat literally) that I haven’t been able to work out basically at all this semester. You know what I have done though? I’ve had colds, migraines, stomach viruses, the flu, and 1, 2, 3 infections- including a sinus infection I’m dealing with right now. I miss running. I miss basketball. I miss being strong (although I never much cared for the lifting itself–picking things up and putting them down just isn’t that amusing to me). I miss even just being able to walk or bike or do yoga on a regular basis. (Hopefully I’ll soon be able to start the long, long climb into activity again, but it’s hard to build anything with constant interruptions from sickness).
It hurts my pride desperately that I’m not able to work. I want to be independent. I want to work. But right now school takes all I’ve got and more.
The thing is this: chronic illness is all the time. No break. It doesn’t matter if you’re out of juice physically or mentally–there are no time-outs, no subs. There is no choice but to keep going every hour of every day; no choice but to wake up every morning having to face the thing that almost broke you the day before–there is nothing but constant, relentless, hard work.
So for heaven’s sake don’t judge me if I need a nap 😉
Monday morning I got my allergy shot, put my allergy serum in a cooler and headed to Buena Vista, VA. Well really there was a bit more to it than that. Like a whole ton of procrastination that led to a whole ton of last minute packing and general scrambling. But in the end I made it and so far it doesn’t appear that I forgot anything super duper important. So we’ll pronounce that a win.
Tuesday morning I called Aetna Specialty Pharmacy to set up my monthly shipment of infusion meds and supplies. On the bright side, I did reach an actual person relatively quickly–something I never quite achieved when I called last week. That’s where the bright side ends though I’m afraid. From there on it was all bad news.
Bad News 1) Your doctor hasn’t submitted the necessary forms to renew authorization on your infusions so your authorization has expired and you can’t get your stuff until that is fixed. Unless you happen to have a few thousand dollars lying around to pay for the whole thing yourself… (I do not)
Bad News 2) Aetna hates you and the medicine you are on because you are both too expensive. So you have to switch medicines. Also you have only one option as to what to switch to. Basically this is a medical dictatorship. Be grateful that it is illegal for Aetna to get rid of you like it has your poor Gammagard. Just in case you should probably be on the look out for assassins hiding behind piles of medical forms and bills.
When I think of dictators…
Bad News 2.5) Bonus: your copay assistance is currently coming from the company that makes Gammagard so that goes bye bye too. Your new medicine also has copay assistance, but there’s no way you’ll be able to get it for this month because the application process takes several weeks and your infusion is in three days (if you even get your shipment by then, which is somewhat doubtful). So basically you’re screwed. But just for this month.
Don’t worry though, this week isn’t all dictatorial doom and gloom. There is always some rebellious patches of sunshine. Like:
- I made it to school again against all odds! (namely a killer migraine Monday and a crazy amount of traffic)
- When I was unpacking I thought that I had forgotten one of the containers with my infusion supplies in it–I did not! All infusion supplies made it safely to school with me.
- I managed to muscle my way in to the family practice clinic in town this week so I can start getting my allergy shots there next week despite the influx of students trying to get last-minute physicals, etc.
- Did I mention I’m at school again? Yay so excited!
- I have spent the last two days under a figurative (and sometimes literal) pile of allthree of my adorable nieces and I get to spend the whole year with them!
Like this but with little girls
- I had a dream that when my new med came (Gammunex-c) it came with a box of awesome stuff like Minion-shaped Benadryl and Harry Potter bandaids. So I feel better about having to switch and fully expect my dream to come true. (But also in the realm of reality I talked to people in my CVID Facebook group and everyone on Gammunex-c seems to be happy with it)
- I got a bunch of my school books and I’m SO EXCITED to read them. (Remember I’m and english major so I get to read good stuff most of the time)
- Last month my IG levels were checked and they were really good, so even if my infusion is late I should still be in pretty good shape.
I could go on indefinitely, but I’ll control myself. The point is this week has been crazy, stressful and hard, but also awesome.