this post was submitted on 24 Oct 2024
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Chronic Illness

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What went well for you? Today or this week. No matter how small, let's celebrate the good things in our lives!

I'll try to post this regularly.

For me, we're getting pizza today because my caretaker is too tired to cook. Sure it's not healthy and expensive. But it's pizza! Woohoo! And as a bonus it's Hawaiian.

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[–] [email protected] 4 points 1 week ago

I found black mould behind the wardrobe in my bedroom this week (boo!), but the leak that caused it was fixed a while ago, we just didn't realise how bad it had been (yay!). I managed to move some furniture and clean some of the carpet*, and pumped the tyres up on my wife's car and my motorbike.

If I can get enough energy to actually get out on the bike now, I'll be laughing 😅

*My wife's been cleaning the mould because I shouldn't be near it 👍

[–] [email protected] 4 points 1 week ago

If the corset brace continues to be as effective as it has proven over the last 3 days, my life is flipping 180 degrees, and it looks damn promising. Last night, after working on my bedroom lab all day, I set my goals to target the end of this year. I want to finish several projects and try to document them to show what I've done with myself and some of what I have learned in the last 10 years. If I am still in good enough shape by the end of the year, I will get my license, a car, and a job. I haven't worked full time since before the crash that disabled me 2/26/14, and have not worked part time since 4/17. So, a little exciting for me. I always felt so very close to okay but it seemed to always be just out of reach. Who would imagine that all it took was a cheap $20 brace strapped around my ribs; certainly not 13 of the most reputable neurosurgeons from San Diego to Los Angeles, a DO, a physical therapist, or a half dozen pain specialists over the last 10 years.

[–] [email protected] 3 points 1 week ago

i finally convinced my doctor that I'm in so much pain now that i can't sleep or take care of myself properly. she referred me to rheumatology to get tested for Ehler Danlos, and started me on 2 medications which have cut my pain in half in just a week. I'm starting to have hope that I'll get some answers and treatment!!