sometimes I’ll be complaining about something bc that’s my right as a chronically ill person, and my parents will chime in with a “you’re in your twenties, you’re too young to be complaining that your back/hips/knees/etc hurt(s)” and I’m like, Yeah??? No shit??? You were AT the doctor’s appointments with me, did you forget the chronic part of CHRONIC PAIN????
shocked and betrayed when my chronic pain is actually chronic and not something I can force myself through to some positive end
I think the police should have to go through a couple suspects that are clearly not right before they are allowed to even entertain the idea of getting the right one.
Y’know. Like a medication or something.
playing pharmacy simulator (sorting my medications)
Your pain (physical/mental/emotional) is valid even if nobody can see it
Your pain is valid even if you have no physical symptoms
Your pain is valid even if there is no physical injury
Your pain is valid even if others tell you it's not
Your pain is valid even if you do not have a life threatening disease
Your pain is valid even if you don't have a diagnosis
Your pain is valid even if you do have a diagnosis
Your pain is still valid even if nobody believes you
Your pain is still valid even if you are too "young" for the problem/issue
Your pain is valid even if the health care advisor/anybody tells you that it's in your head
Your pain is valid no matter what the conditions are
Your pain is valid.
Pain does not discriminate between age, gender, race, nationality etc. Just because you can't see pain, doesn't mean it's not there.
Here's something that's been mindfucking me for the past two damn weeks. So not only do I need surgery to have my colon and rectum removed & to get an ileostomy, but I also have to see a pelvic floor reconstruction surgeon.
Because with my Ehlers Danlos Syndrome, I'm high risk for prolapses, and guess what being sex trafficked for the majority of your childhood does to your developing pelvic floor? Spoiler: nothing good.
So because of this blessed combination of genetics and abuse, I have multi-pelvic-organ prolapse, and no ability to withstand pelvic floor therapy. I tried. I just literally cannot fucking do it. And there's the fact that pelvic floor therapy might not even work for the severity of my issues anyway. Ergo, surgery.
Now I get to have two surgeons argue over the best way to butcher my body into something livable and I can't even explain how fucking tired I am. I don't even know what to feel about it beyond exhausted.
And then I have friends who are also going through things and I want to be supportive & I try to be, but I just can't do all the things I want to do because I'm spending half my fucking day in a dissociative fog because I just don't know how to process any of this.
I'm really fucking tired of watching my husband suffer so much because I'm so sick. I feel like people don't talk enough about the trauma spouses go through, watching the person they love most in the world continue to deteriorate constantly.
Had a doctor appointment today where I found out officially (I suspected this would happen for a while so it's not exactly new information) that I'm going to most likely need a proctocolectomy and an ileostomy. Which basically means they're going to chop out my colon, sew by butthole shut, and give me a stoma on my abdomen where I shit into a little bag. Cheers.
Obviously I'm having feelings about it but that's not what this particular post is about.
He has PTSD from watching me almost die from a bowel obstruction and having two emergency surgeries, a bowel resection, end up tube fed, and then on TPN. Obviously I survived all of that, but he's still really, really impacted by it. Then I got a brain tumor and had brain surgery, which was a whole ordeal. He struggles so much every time I'm in the hospital.
So for me to be having serious GI surgery, arguably the most extreme surgery I've ever had besides my brain surgery, is so triggering for him. And what can he do, just grin and bear it? It's fucking awful, and I know that I'd rather be the sick one instead of the one feeling powerless and alone in the face of all biology can do to wreck a human.
so here we are again. fuck it, sincerely.