crohnie-in-crime-blog

[crohnie-in-crime-blog]

So I haven't posted in a bit but I figured I would now because a) holy shit and b) this is the only place where people will maybe probably understand. Remicade was pushed off my months because I kept getting infections, and most recently, C. Diff. I'm supposed to get a bunch of ultrasounds every 10 days or so to make sure that no more abscesses are forming and no infections are growing. Basically, things worked out for once, and yesterday was the first-second (i had to restart bc infections...) one. Not. Good. Turns out I'm allergic to something in it real bad. Within 15 minutes my chest got tight, then my throat, then my face. Apparently I went super red within a minute. This was with the Tylenol and steroids as the pre-drug. Within minutes it was getting harder to breathe, I couldn't take a deep breath when the nurse needed me to, and I got super nauseated. I got two doses of Benadryl and stopped the infusion instantly, and I ended up puking a few minutes later. And then I was okayish and slept in the chair for an hour. It was terrifying for everyone and I don't even want to think about what would have happened if I was alone. It would have killed me, I think. It felt like it. So my GI said yeah no, we aren't trying Remicade again, esp bc that happened with the preventative measures and also being on the lowest drip. So instead... Humira! I've been watching videos and doing my homework, and already I'm calming down with that aspect. I think, after those anti-clotting needles in the hospital, I can deal with this. Those things were the worse needles ever. I do have sleep anxiety, currently. I have this fear that I'll have another secondary reaction in my sleep and I won't wake up. I'll take Benadryl first but ugh... I should be asleep. Note: never be afraid to interrupt a nurse on the phone or in conversation etc if you start feeling ANYTHING weird. My mom did for me and it was bad enough, those extra few minutes could have cost me a whole lot more pain. It's honestly scary.

[crohnie-in-crime-blog]

That constant struggle between “I can’t show my symptoms or I’ll be a burden” and “why doesn’t anyone realize I’m suffering?”

[crohnie-in-crime-blog]

I did a really quick doodle of a gal with a PICC line. There’s not a lot of art represention of these small... “disabilities” (is it considered that? I genuinely don’t know) and right now, due to my Crohn’s, I have a line with a pump in a bag similar to the one on this random woman. All I know is that I want art representing us spoonies, no matter the reason, bc I have never seen art for this.

I’m willing to represent more of these little difficulties that make our invisible diseases a little more visible. Or even the invisibility. I just want representation because personally, it makes it a little easier to deal with. Does it help anyone else?

[crohnie-in-crime-blog]

what people think doctors say: gentlemen, we can rebuild him. we have the technology. we have the capability to make the world’s first bionic man. steve austin will be that man. better than he was before. better…stronger…faster.

what doctors say: i dont know. keep trying the meds. see you in eight weeks.

[crohnie-in-crime-blog]

ability

abled people: can you do the thing??

disabled people: ... technically yes BUT it would hurt like hell/ruin my day/trigger a flare/exhaust me/be a fall risk/make me more sick AND THEN I would have to spend a day in bed/increase my dosage/cancel all my other plans/spend a week recovering afterwards

abled people: ... but you CAN do it

[crohnie-in-crime-blog]

Literally missed the event I've been waiting months for because I had to be hospitalized but you know what? I'm not even mad. I feel better than I have in so long. I think Remicade is my solution (and yes I know I will have flare ups).