I Don’t Think Healthy People Every Really Get Chronic Illness.

I don’t think healthy people every really get chronic illness.

I have a friend I know from when we were both 6. She is the only person living nearby and so she saw me go from walking through limping to wheelchair on a daily basis. I keep her updated on my health even tho we rarely hang out anymore. She was gonna come over yesterday and I had to cancel. She asked if I can’t hang out later that day. When I said i won’t feel better later, that if I feel that bad in the morning later will only get worse she got annoyed and “joked” that I’m just finding excuses. And I was surprised, she knows all about me being disabled after all? So, a bit taken aback, I told her it’s a normal thing for me.

“But you got the diagnosis now, aren’t you better?? I thought you’ll get better now”

She was honestly surprised and it made me realize a thing. They don’t get it. They don’t get that getting diagnosed only equals benefits like welfare or parking spot for us, and sometimes better pain meds but that is just like pushing luck. That it’s a forever thing. That that one day we felt good a week ago was just a bright spot and doesn’t mean we won’t need our aids anymore, cause chronic illness is not linear and will make a great comeback in next four hours, and the next good day is planned on when we’re 70. Cause when abled people are sick, they get better. And our illness is just an excuse for them. And when we say we will never get better they think we’re being dramatic and pessimistic. And I don’t think they’ll ever get it, cause to get it you need to live it. And I want my friends to stay healthy and not go through hell.

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3 years ago

oh my god. I got blood work and had to provide a urine sample today and my kidneys are so much more fucked than I thought. I have 3 grams of protein now. When I had severe stage 3 albuminuria, I only had ONE gram. White blood cells and red blood cells in my urine too. And ketones??? I don’t have type 1 diabetes, I don’t know what that’s about. Still waiting on a few tests to come back (c3, c4, dsDNA, CRP, ANCA), but so far my results are 31% abnormal. yay? I haven’t been able to see a nephrologist despite how hard my rheumatologist tries. the paediatric ones think I’m too old and the adult ones think I’m too young. I get edema in my legs too. Going to be interesting seeing where this leads

update: my 2 year long C4 deficiency is gone! just to be replaced with a C3 deficiency. rip to my immune system #immunocompromised😍😍


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3 years ago

i had a kidney biopsy. there were like 13 people in the room. giant needle through my back 6 times. they only got 4 samples. they missed twice. lmao. im out of the hospital now,but whole thing was scary af. idk when im getting the results


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2 years ago
Text that says, "The gulf of meaning between the terms 'horse play' and 'pony play' illustrates why expecting your culture's translation of another's ancient texts to be 100% true to their original intent is dangerous and probably not a good idea."

I think about this a lot.

2 years ago

recently saw ppl discuss whether they put their medicines in a kitchen cabinet or a bathroom cabinet and i was shocked by the fact that many ppl said kitchen cabinet. so now i need you to reblog this and say where you keep yours


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most tortured girl in the whole world!

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