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my tummy hurts because of the GIANT FUCKING SCAR and the HOLE IN MY ABDOMINAL WALL and I am being SO fucking brave about it fuck

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{Words by Anaïs Nin, from The Diary Of Anais Nin, Vol. 4 (1944-1947) / Cynthia Cruz }

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#worth it #pain #heating pad #spoonie #spooniestrong #burn marks

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if you want add in the tags where you're from and what kind of job it was! i've been thinking about this and i'm very curious

please reblog for a bigger sample size etc etc

#age12 #montana #cleaning offices

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“Disabilities are not things to be embarrassed of and being disabled is a part of who I am”

And

“Certain disabilities are so unbearable that it’s normal to wish you weren’t disabled”

Are two separate concepts that can and should coexist

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one thing about me is i don’t remember a fucking thing bro

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You tell me that you love me so

You tell me that you care

But do you really still

When I'm never there?

I cancel plans

But I answer texts

I'm frozen dead and crying

I'm good how are you?

I'm lying

January turns to June

And fall is coming far too soon

But please believe me

I miss me too

If I were to start complaining

About all the ways I hurt

You'd never hear from me

Another happy word

So I smile

So "I'm fine"

I say I'm doing well

But good relates to bad

And my bad is living hell

#poetry #original work #spoonie #chronic illness #spoonie things #mental health #depression #chronic pain

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ack 😫 the prednisone is stuck to my tongue

getitoffgetitoffgetitoff

#chronic illness #spoonie things #spoonie #systemic lupus erythematosus #lupus

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My dad and I once had a disagreement over him using the adage "What doesn't kill you makes you stronger."

I said, "That's just not true. Sometimes what doesn't kill you leaves you brittle and injured or traumatized."

He stopped and thought about that for a while. He came back later, and said, "It's like wood glue."

He pointed to my bookshelf, which he helped me salvage a while ago. He said, "Do you remember how I explained that, once we used the wood glue on them, the shelves would actually be stronger than they were before they broke?"

I did.

"But before we used the wood glue, those shelves were broken. They couldn't hold up shit. If you had put books on them, they would have collapsed. And that wood glue had to set awhile. If we put anything on them too early, they would have collapsed just the same as if we'd never fixed them at all. You've got to give these things time to set."

It sounded like a pretty good metaphor to me, but one thing I did pick up on was that whatever broke those shelves, that's not the thing that made them stronger. That just broke them. It was being fixed that made them stronger. It was the glue.

So my dad and I agreed, what doesn't kill you doesn't actually make you stronger, but healing does. And if you feel like healing hasn't made you stronger than you were before, you're probably not done healing. You've got to give these things time to set.

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it is punk as fuck to be in such bad pain and to be so fatigued and yet, still be alive. fuck yeah i’m proud of you.

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Hopefully this tip can help anyone

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So mid Sept I get hit with a big colitis flare. I was in a vomiting cycle and lost about 12 lbs in 4 days. I go to the ER to request fluids, zofran and prednisone. Then continue on to PCP for a larger steroid taper script.

3 almost 4 weeks later I am finally feeling "better". By this point I have lost 20 lbs and by better I mean that I am able to eat more than applesauce, I have more stamina, and I am talking to work about a plan to start coming back with short shifts a few days a week.

Sunday Oct 16 around 7:30p I am suddenly in severe abdominal pain. My thought is the flare is flaring. At first I try otc pain relievers and heat to no avail. This is 9/10 pain so my husband says yeah no we're going to the hospital now. We arrive at the ER about 9p.

CT results show a perforated colon. 2a emergency surgery shows the whole colon is a lost cause so they yeet 24" of intestine and throw in an ileostomy.

I then wake up in a hospital bed with an NG tube (at least this time I was unconscious when it was inserted), a catheter, a rectal drain tube, and 3 IVs. 2 weeks later I leave the hospital with a wound vac machine. Wound vac btw is the most miraculous and most uncomfortable/down right painful medical device I've experienced. 0/10 do not recommend but also like 10/10 it closes open incisions up hella fast so let's call it 7.5 ¯\_(ツ)_/¯

I have now been home about 4.5 weeks, incision is almost completely closed, doc says everything looks good and is healing well, I'm adjusting to the ileostomy and all that that involves, and only have 3 more weeks of FMLA.

This is the second time my husband has saved my life because my instinct is to ignore and/or try to tough it out when I've experienced extreme abdominal pain. Early last year I just knew the pain was a UC flare - it was appendicitis. This time I was sure it was a UC flare - it was technically sorta and definitely UC related but also my abdominal cavity was filling with fecal waste and blood and I could've easily died if I continued to ignore it.

Note to self: just because you are used to pain does not mean you are allowed to ignore pain!

Now, this is a story all about how

My life got flipped-turned upside down

And I'd like to take a minute

Just sit right there

I'll tell you how the doctor just fuckn ripped my colon out

#ulcerative colitis #colectomy #ileostomy #chronic pain #chronic illness #spoonie #surgery #surgery story

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Now, this is a story all about how

My life got flipped-turned upside down

And I'd like to take a minute

Just sit right there

I'll tell you how the doctor just fuckn ripped my colon out

#chronic illness #spoonie #colectomy #ileostomy #ulcerative colitis #ostomy

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"Gross" stuff needs to be normalised in the disabled community. Like incontinence ect. There's such a layer of shame around it even in the disabled community.