#relapsing polychondritis

[sacredjinx]

[sacredjinx]

Human by Imelda May

"...so come adore me, but know I'm gonna fall, off of this pedestal that I helped you put me on..."

[persepinesascent]

S has his trach tube replacement procedure early tomorrow. They're putting him under general anesthesia because it is a new doc and because his remaining trachea and scar tissue and disease is complicated. 🤞🤞🤞🤞🤞🤞🤞🤞 😬😓

[persepinesascent]

I’ve never seen my husband this sick in eight years of being together. He went to sleep right before I got home at six and has been asleep for 6 hours now. No dinner and hardly drinking. He finally got up for the bathroom and I swear I heard him fall or something in there, but he said he was fine and now it’s been silent for 5 mins… he had a fever of 101 last a checked… fuuuuuuck I am so nervous

[illegal-deer]

National Rare Disease Day

It's national rare disease day today so I figured I should talk some about my own experiences. I have relapsing polychondritis, which essentially means that instead of attacking the things it should be attacking, my immune system has gone rogue and is attacking the cartilage in my body. The doctors around where I live are lovely but don't really know how to deal with it since it's so rare. I want people to become more educated about rare diseases so that maybe more research will be done to find treatments for them. Right now, the only actual treatment that I have been offered for my illness is a medicine that has so many side effects my family and doctors have decided that it's too dangerous for me to take. Meanwhile, if this disease progresses it could impact my respiratory system and heart. What I'm saying is that a lot of people with rare diseases don't have any good options. It's either take a dangerous medicine that could kill you or let the disease go and hope that doesn't kill you. Nobody should have to make that kind of choice. It's important to draw attention to rare diseases and the way that they are so often ignored so that they no longer can be ignored. And to everyone reading this who also has a rare disease, you're all incredibly strong. Keep your head up. You are stronger than your illness.

[persepinesascent]

We're back

And still sick with my sister’s cold, but she got engaged in Thailand yesterday to her boyfriend of six years, so i forgive her!

We spent like 15 hours traveling back from Greece yesterday, and s gave me a HUGE scare towards the end of it. We were flying in over Canada to avoid the storm east of New York (adding like 2-3 hours to our 8.5 hour flight). S was watching the football/soccer game and suddenly bent over and grabbed his leg, grimacing horribly in pain. I wasn’t sure what was going on and thought he would probably be fine, but then he completely collapsed unconscious over his legs. Completely limp.

At this point I should back up and say that with his tracheotomy, having a clear airway is a constant concern, especially when he has a cold. To top it off, the machine he is supposed to sleep with at night to keep his airway clear had broken three days before, adding to his discomfort and risk.

So yeah, I FLIPPED OUT, and immediately tried to get his limp body upright in the airplane seat and open his trach, and press the call button and started saying his name and yelling “Help!” all at the same time because he had convulsed a little and his breathing was extremely labored before I opened his tube (it’s always harder for him to breath with it closed, and if there was a blockage, that’s the first thing I’d need to do).

He came to within 20 seconds, as the nearest docs were just arriving. They checked his vitals and he seemed fine, but he was totally out of it for the whole rest of the night. He said he had just hit his knee and passed out from the pain, being weakened by exhaustion and the cold virus and probably set up by the pseudoephedrine we’d bought in Greece.

He slept with his machine last night and seems back to normal today - that is, back to being much healthier than I feel, which is our “normal!”. That’s what makes this so weird and scary. I’M the one who is light headed and sick all the time. He’s never passed out in the 6 years I’ve known him (although he says that’s not the first time he’s passed out from pain).

I hope it never never ever happens again. I at least need a couple more years before his next medical emergency.