chronically ill and not happy about it :)

[chronically-crying]

Hi! I'm Sky, a 20 year old with Crohn's disease that is wreaking havoc on my body through both GI and skin/joint symptoms. I wanted a place to vent and also to talk to other people with chronic illnesses/autoimmune disorders of any magnitude, and maybe get to know people! My main is @skysmiscblog where i barf out whatever words i have in my head and sometimes art when i forget to switch posting to my art account @pugsleyaddams, you might see the occasional post from those accounts if i post something relevant there or want to show off something that made me happy through this shit time I'm having, so hopefully it can make someone else's shit time a little more bearable :)

[chronically-crying]

me when i'm tired n just wanna go to bed: maybe I'll be fine if i don't do my wound care for one day.

also me: *can not sleep comfortably unless i do my wound care because my wounds are in the point of healing now where if they're uncovered it's super uncomfy*

[chronically-crying]

the most fucked part about having ptsd for me is having intrusive thoughts so intense just having to visualize it is as visceral as if i were actually doing it, like I was fidgeting with this key ring i keep on my water bottle, which I do ALL THE TIME, but for like four solid minutes I was convinced that if I did close to my face I would poke out my left eye. Sometimes I'll be sewing up holes in my clothes and I'll have to stop because I can't stop imagining what it would feel like to stab myself directly in my chronic wounds with the needle. it's usually not even a problem but like. when it is a problem, it's awful

[chronically-crying]

so. months ago. i started seeing a new dermatologist bc she's more experienced with treating people with my condition,, and im on this immunosuppressant cyclosporine that comes in a couple different forms. i used to take the normal capsule form of it and it gave me very few issues. I just needed to remember to take it with food and i would experience no side effects.

then my doc switched me from the normal capsule (sandimmune) to the gel capsule version (neoral) and every time i take it I almost throw up, no joke. It's gotten worse over time the longer i've had to take it, it used to be just the unpleasant smell but now when I take it (i just took 200mg after not taking any for like a week) I plugged my nose to block out the smell and i swallowed them as soon as I put them in my mouth and STILL i immediately gagged and almost couldn't get them down. I told the resident i usually see that I was reacting that way and she was like "you are experiencing the side effects" so when i go home next week and see my dermatologist i am hopefully going back to the sandimmune

[chronically-crying]

My doctor wanted me to take a stool sample to check my fecal calprotectin (inflammation marker) test and we had an appointment n she was like "did you get the test?" And I was like "yea :( I couldn't do it it was too scary" and I was expecting her to be like. Annoyed or smth. But she was like "oh that's fine! You know, about 2/3 of people can do it, 1/3 just can't" so I guess It's not that uncommon

[chronically-crying]

doing wound care the past couple days has resulted in some bleeding, barely any and definitely not enough to be concerned about, but it just had me thinking that any person would look at me and have no idea how physically fucked up my body is, if i don't have my cane they'd never know how much my legs always hurt and unless i told them theyd have no idea about my crohns or my chronic nonhealing wounds.

[chronically-crying]

sometimes i totally forget that i have PTSD but then I get super anxious thinking about mundane doctors visits I have coming up and I'm like "why am i getting so nervous? This is normal stuff for me" and then I remember the nine weeks I spent in and out of the hospital seeing doctors almost every day and I remember that yes, the doctor is a good place you go to get better but also a place I have experienced unspeakable horrors beyond what many people could probably handle if they knew the extent of it

same kind of thing sometimes happens when I do wound care, sometimes i just get filled with this awful dread when I think of actually lifting the area I need to because so many times before, doing so meant awful pain and pressing against huge wounds through thick padded bandages, and while now the wound is very small I still anticipate that awful pain that won't go away for hours

It was obviously SO much worse when it was happening and I was developing trauma responses while having to experience my triggers multiple times every week, if not most days. But it's still felt. And I'm glad I can forget about it sometimes, but there's. a lot of weight there. and I wish I didn't get anxious when it's time for me to go to the doctor.

[chronically-crying]

i went and got a blood test today to heck my medication levels and I basically gave the phlebotomist my little presentation about how to draw my blood (look at the hands first, don't feel discouraged if it takes more than one or two tries, my veins are small + disappear + roll around, record is 9 sticks for an IV) and thankfully she got it in one today but I was like "yeah sometimes it can be really tough to find a vein" and she was like "drink water maybe" and I was there internally like 'you think i haven't tried that?? it only sometimes helps'

people are all like love your body but what happens when your body doesn't love you back?? what then??

[chronically-crying]

Me: *explaining my horrific medical history bc one of my friends asked about it n im really open abt that stuff*

My friend: Damn god should've taken you out to dinner before he fucked you like that

[chronically-crying]

I hate these cyclosporine gel capsules I have to take I hate them so much I just literally put my meds in my mouth and the second my body registered them I gagged so hard I almost spit out all of my pills, I gagged again when i was drinking the water to wash them down, and once I had them down I got so nauseous I almost threw up immediately after I really need to talk to my doc about putting me back on regular capsules

[chronically-crying]

So annoyed I went to the dining hall bc I was like "yea I could eat rn" instead of waiting until I was in physical pain from hunger... Like if you feel hungry you should eat, that's the logic, but Crohn's says "you actually need to have no food in your body before you can eat again" like wtf bro

[chronically-crying]

gonna be real if I heard someone say that eating vegetables was detrimental to their health when I was little I would've been like "how?? that sounds fake" but now that's me and I'm like wow this sounds fake but also it's so real and so sad for me bc sometimes I just wanna nom on a whole bag of baby carrots but I know if I had even half of one baby carrot it would fuck me up for the rest of the day, or at least it would when I'm in flare

[chronically-crying]

I just checked my wounds as one does when they have to do their wound care and I saw that it was healing the way it's not supposed to and I looked at the open wound on my tit and said "that's not very poggers of you"

[chronically-crying]

Thinking about when I was first diagnosed with Crohn's in 2020 my mom got all these Facebook friends being like "oh well you know my niece's husband's cousin had Crohn's disease but he took these fish oil pills and now he's cured!" Meanwhile I was in the hospital twice for a total of two weeks, barely able to ingest even water, constantly tired but still unable to fall asleep, shitting basically every hour on the hour, on meds that barely kept me in passable health, and people are like "eat greens!" (I can't digest greens unless I'm in good health and when I get sick they're the first thing I cut) "Get more exercise!" (One of my biggest external triggers along with stress) "I swear by this remedy!" "Meditate!" And my mom and I would just be like "oh yeah let me just ask nicely for my colon to stop destroying itself"

[chronically-crying]

The quirky Crohn's thing my body does where when I'm going into a flare it won't tell me i can't eat any more until the food is in my mouth and I'm chewing it and there is no natural indication of the want or impulse to swallow my food and then I'm sitting there with bacon in my mouth chewing several seconds longer than I need to just so my body will get the memo

[chronically-crying]

Came to Canada for college the last week of August, and since my parents left a week later I have gotten so nauseous I've thrown up on 2 occasions 3 weeks apart and I don't even specifically know why... the first time was literally right after I'd eaten a whole meal but the only thing that came up was water (no idea how that even works) but yesterday I had only eaten breakfast at like 10 in the morning and I threw up at midnight n there was still a little substance to it

[chronically-crying]

oh boy i love it when my period hits me like a truck and i'm crazy light-headed n pretty dehydrated despite not even bleeding that much bc of the meds I'm on specifically to reduce menstrual bleeding, almost pass out after standing for half an hour for voice lessons/almost fall asleep at my desk in the next class, sleep for three hours when I get back to my dorm, only eat one meal in the day bc I'm too exhausted to go to the dining hall n have no appetite even tho I know they were serving my fave kind of soup today,, fuck around on the internet for a while (and also video call my mom) and then just past midnight I realize "Oh shit I'm about to throw up" with no nausea beforehand to warn me, I try to take my nausea meds in time but when I realize that clearly won't happen I take the meds out of my mouth where they were dissolving so I can throw up into the toilet for like a minute. These are the fun friday nights people said I'd have in college, right? ...right?