Well that was horrifying. TMI to follow.

[gwydion]

I was exhausted from the whole not sleeping properly thing, so I went to bed early. By the time I was settled in for sleep, something terrible had started to happen on top of the bronchitis shading toward pneumonia that I'd already been dealing with. Guessing (correctly as it turned out) that my ear drum was considering rupturing from the infection I've had since October, I applied heat and got dressed again. I had a couple nightmarish hours waiting for Squirrel to get home from work. Of course the emergency was backed up from Saturday night's disasters, including an exciting stabbing, so those of us not actually bleeding to death had to wait and understandably so. Still it was no fun for me and the poor bastards sitting around me to watch me spend several hours coughing up horrifying things under my mask, struggling to breath, and moaning as my left ear drum proceeded to rupture and my right worked itself up toward the same goal. I was already out of spoons like three days ago and the few I had I'd been wasting on things like breathing and periodically feeding myself and the animals. I simply had nothing left for four hours of stoicism. Of course 40+ years of not crying for physical pain no matter how bad meant that I couldn't even though I very much wanted to. It would have been a release, especial for the part where it was like being repeatedly stabbed in both eardrums on top of the baseline pain crescendo. There was moaning alas. I wouldn't have blamed the others if one of them had shot me like a lamed horse.

The sound of the ear going was fascinating. It sounded at first like popcorn popping over the sound of snow creaking. The popping sped up and got loader, sounding more like muffled rapid gunfire. Then there was the sound of ripping silk followed by the sound at the end of an old vinyl record when the last song is over. Then followed a high pitched steady sound like an electric alarm going off, followed by static and more snow creaking. Then I got to listen to the disturbing sound of the puss pouring out for a couple of hours, then soft ringing over silence. Meanwhile the other ear was doing popping and snow creaking, but it's still deciding whether to rupture or not. All of this while waiting to see the doctor and no pains meds. Fun.

I mostly can't hear. It's all staticky hum. I can get enough words to guess what's going on if people look directly and speak loudly. I should get about 80% back eventually. I am hoping I can get hearing aids as I will eventually go progressively deaf from antibiotics as my disease progresses anyway. The emergency room guy didn't say I'm in the next phase of the disease that will eventually kill me, but I've watched the progression in others and I'm not fooling myself. Anyway, we've got another course of even stronger antibiotics and they are sending me to a specialist Monday, something I think should have happened in January but the Doctors weren't willing to escalate. I need a cf/cf carrier specialist, which is again no surprise to me. There is reason to think I'm permanently infected now, like my Mother was the last twenty plus years of her life, which means long term management instead of acute treatment.

Anyway, Ive got the new antibiotics and incredibly expensive ear drops and emergency percacet. I'm done meds and hydrating, so I'm off to bed.

Comments

[yaseen101.livejournal.com]

Damn, that's terrible.

If you don't mind me asking, what sort of disease are you suffering from? Is there any cure?

[gwyd.livejournal.com]

I have two degenerative genetic things and a variety of related stuff. The one that will actually kill me is cystic fibrosis carrier syndrome. If you get two copies of the gene you generally die before 21. If you get one copy of the gene, you get crappy lungs and a tendency towards catching every respiratory thing that comes your way. Eventually, the lungs become too damaged to continue. In the meantime, you tend to get infections you can't fight off which then become endemic. My case is messy because I also have an autoimmune arthritis (ankylosing spondalytis), so my immune system marshals and extra crappy response as it's more interested in getting rid of all that pesky cartilage and the like.

I don't mind writing about it.

There is no cure. Treatments get better over time. My lungs are better than my Mother's were at this age. No one cares about AS, as it's comparatively rare, but we get the benefit of research and treatments for Rheumatoid arthritis which is more common. Unfortunately for me, the best treatments for the autoimmune stuff are too dangerous for someone with cf carrier syndrome. That means I can't stop the degeneration of my hips and spine, though I can use the non-narcotic pain meds developed for other folks with rthritis and thanks to cancer research, I have amasing anti-nausea drugs that allow me to keep my pain meds down.