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Ask HN: How do you deal with chronic illness?

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Re: Ask HN: How do you deal with chronic illness?

#181

Post by devteambravo »

specialist wrote: post #173
devteambravo wrote: post #66

Not quite illness, but I'm still here, after surviving a 500Lbs SVBIED blast in Afghanistan. ~300 surgeries/10yrs later, I'm sitting here trying to become a product engineer while dealing what could be construed as hurdles: -Massive insomnia. I try to meditate, read tech news and listen to Javascript lectures. I can't reliably schedule meetings in the morning due to sometimes not falling asleep until 6-7am. Hack your…

Hi. Thank you for posting. Dayum. re Insomnia & anxiety: Have you ruled out nerve related causes? Maybe injury or impingement? I ask because my insomnia and anxiety was largely resolved after spinal surgery. A lumbar fusion eliminated maybe 80% of symptoms. Removing cervical (upper spine) bone spurs another 10%. Prior to that, my doctors had me try all sorts of pharmacological and cognitive treatments. As my symptoms…

Thank you for your insight. I have fairly substantial nerve damage, all over the place. Unfortunately, I didn't have much success with that path

Re: Ask HN: How do you deal with chronic illness?

#182

Post by ztauras »

paranoid schizophrenia here: i deal with my illness by acceptating it: it is a gift and a boon at the same time, but you must learn to leave a atom of sanity when the psychosis strikes, and give up to medical personnel. Sometimes you just launch yourself to full insanity, and after some time return even without a psychic ward or medicine, some times it breaks you for a couple of weeks.

Re: Ask HN: How do you deal with chronic illness?

#183

Post by guybedo »

49yearsold wrote: post #53

Diabetes - since my mid-30's - now am approaching 50. Have maxed out on all pills. Very soon will be put on insulin. Did lot of running for a decade or more. Diet control is my weak point and toughest to be disciplined about. Not that I gorge on sweets/candies - but rice, fried food is something I cannot do a clean breakup with. But as and when I can - do regular exercise (running) and diet control. Very difficult fo…

fwiw you can have a look at https://www.virtahealth.com/. They are reversing T2D with ketogenic diets

Re: Ask HN: How do you deal with chronic illness?

#184

Post by [deleted] »

Karawebnetwork wrote: post #9

One day at a time. Since you cannot cure that illness, I recommend fixing everything in your life that you have control on and that might help you feel better. Sleep well, eat a good diet, skip fast-food and alcohol when possible, etc. This won't cure it (don't listen to people that say it will) but it will make your overall life better. This will make it so that when the chronic illness hits you, you're at a more st…

[deleted]

Re: Ask HN: How do you deal with chronic illness?

#186

Post by wpasc »

injidup wrote: post #29
wpasc wrote: post #18

I have ankylosing spondylitis, a form of arthritis that mostly affects the spine but for me also affects my other joints. I used to work out constantly in high school until it got worse in college and I could no longer tax my joints that way. I live with it by trying to do as many healthy habits as I can and reducing stress as much as possible. Healthy diet, good sleep, meditation ( I live with pain in my joints ever…

Hi there, Really sorry to hear about what you go through. I was diagnosed with AS almost 15 years ago. Not sure what country or health system you are under but I'm in Austria, and treated with a medication called Simponi. https://www.simponi.com/ankylosing-spondylitis . It's a TNF-Alpha blocker and as far as I understand it damps down the immune response in certain cells that cause the inflammatory response. It's pre…

Hi, thanks for your reply and also sorry to hear that you're dealing with AS.

I'm in the US but I have good insurance. I'm very familiar with TNF-Alpha inhibitors as I have tried several. I started on Remicade which actually worked, but my rheumatologist at the time foolishly switched me to Humira for the sake of convenience. Once I switched, it did not work anymore nor have I had any response from a TNF inhibitor since (switched back to Remicade and also tried Enbrel). I switched to a better rheumatologist who explained to me that if you start and stop a TNF inhibitor, they may never work again as your body adapts to the medicine.

I don't mind though, I have health anxiety and got a few weirds symptoms and infections on the TNF inhibitors. Many patients lives are changed by TNF inhibitors and those therapies are game changers in rheumatology. For me, however, the medicines scare me because of the side effects I had and don't work anyway.

I also tried sulfasalazine but had the rare side effect of falling white blood cell counts. Given the level of my disease activity which has been radiographically slow and that my day to day pain is manageable, I prefer to be off medicine and deal with the pain.

I still love to ski when I can and will still do those activities which bring me happiness (hiking, dancing, etc.). For me though, I get tendonitis when starting or attempting really any form of regular exercise.

Thanks for your reply and I wish you the best in your treatment.

Re: Ask HN: How do you deal with chronic illness?

#187

Post by throw982739182 »

throw982739182 wrote: post #139
neurouch wrote: post #35

I've had a chronic headaches for over 20 years. Actually just one big long two-decade headache, it's never gone away and nothing, including painkillers, really helps. Three things that I do to deal with this: - ignore: most of the time it's not top of mind; I can feel it always but don't think about it always. - keep up some hope: every few years, I go through the usual rounds with my GP and other specialists to see…

If you haven't tried it already, given that you also have lower back pain, try a posturologist, if you can find one... It's hard to find much info/practitioners. I'm also not sure how legit some are. Usually I would avoid non-conventional treatments (though I have been taken by family to everything from osteopaths to chinese medicine practitioners), but previously similar fields (e.g. chiropractors) had sort of helpe…

I meant homeopaths, not osteopaths. Osteopaths might actually be quite similar to what I'm talking about but am not 100% sure.
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