Ask HN: How do you deal with chronic illness? • Hacker News Board

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

#121

Post by unwind » Mon, Oct 19, 2020, 7:28 PM UTC

DoreenMichele wrote: post #112

unwind wrote: post #106

Earlier quoted context omitted.

Why does the immune system warrant scare quotes? Or are those some other kind of quotes?

Unlike, say, your circulatory system or digestive system, your immune system is not a separate set of distinct and readily identifiable organs with a specific and isolated function of "immunity." Your skin is part of your so-called immune system. Your gut is part of your so-called immune system. Your respiratory tract is part of your so-called immune system. Figuring out that the system as a whole is generally design…

Thanks for clarifying and (of course) good luck. For what it's worth, I'm sorry you have to live with that s*t.

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

#122

Post by heavyset_go » Mon, Oct 19, 2020, 7:29 PM UTC

notslow wrote: post #75

We recently learned that the chronic illness in our family was due to long-term toxic mold exposure. Here's what we have learned over the last 10+ years: 1) Learn to advocate for yourself. One wise doctor told us "we're all just guessing". I don't know exactly what you are dealing with, but do your own research and seek out health practitioners that are on the leading edge of that community. 2) Learn your "dose". Eve…

Did the symptoms go away after treating the source of the mold? I'm also curious about the symptoms that were experienced if you're comfortable sharing.

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

#123

Post by elric » Mon, Oct 19, 2020, 7:32 PM UTC

notslow wrote: post #75

We recently learned that the chronic illness in our family was due to long-term toxic mold exposure. Here's what we have learned over the last 10+ years: 1) Learn to advocate for yourself. One wise doctor told us "we're all just guessing". I don't know exactly what you are dealing with, but do your own research and seek out health practitioners that are on the leading edge of that community. 2) Learn your "dose". Eve…

Woah. Glad you figured out the cause! That reminds me of a Reddit post where someone thought they were being roofied and raped, but where bed bugs were found to be the ultimate cause of all their symptoms.

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

#124

Post by Ingosla » Mon, Oct 19, 2020, 7:35 PM UTC

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…

I was diagnosed 3 years ago,A1C was 11%. Doctor gave me 2x Mitformin and other meds and said I should probably start insulin within 6months.

I never took the meds they gave me. I started a keto diet righ away and never looked back. Now my tests have been all showing I'm in pre-diabetes range.

I eat healthy and walk everyday. I don't miss sugar anymore and I do have fast food once in a while.

What I eat: - Chicken, fish and some meat - eggs, salad, cheese, milk, tea, coffee - sugar free biscuits and sometimes sugar free Ice Cream - a lot of water - vegetables, and a special bread, no rice

I also found out that my insulin get released during lunch and later dinner, but not much during breakfast or after lunch. So I time how much I eat accordingly.

The nurse didn't believe her eyes when she saw my results and asked me about what diet I used.

I did prick my finger a LOT in the first 3 months but it was worth it, as I now know exactly what to eat and what to avoid.

I used a forum extensively (UK oriented) to follow my diet [1]. Hope this helps.

[1] https://www.diabetes.co.uk/forum/#diabetes-discussion.12

Edit: above is not a medical advice nor should you follow it to beat diabetes, it's only my personal experience.

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

#125

Post by shock » Mon, Oct 19, 2020, 7:38 PM UTC

notslow wrote: post #75

We recently learned that the chronic illness in our family was due to long-term toxic mold exposure. Here's what we have learned over the last 10+ years: 1) Learn to advocate for yourself. One wise doctor told us "we're all just guessing". I don't know exactly what you are dealing with, but do your own research and seek out health practitioners that are on the leading edge of that community. 2) Learn your "dose". Eve…

I'll just leave this here since it was eye opening for me: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5377931/

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

#126

Post by shock » Mon, Oct 19, 2020, 7:45 PM UTC

DoreenMichele wrote: post #112

unwind wrote: post #106

Earlier quoted context omitted.

Why does the immune system warrant scare quotes? Or are those some other kind of quotes?

Unlike, say, your circulatory system or digestive system, your immune system is not a separate set of distinct and readily identifiable organs with a specific and isolated function of "immunity." Your skin is part of your so-called immune system. Your gut is part of your so-called immune system. Your respiratory tract is part of your so-called immune system. Figuring out that the system as a whole is generally design…

> my underlying condition cannot be fixed.

Yet. I don't want to give you false hope, but I believe CRISPR-Cas9 to be a game changer of the sort that we will classify time are pre- and post- CRISPR-Cas9. Until the technologies to fix your genes become available, you're already doing the best you can to take care of your body (I've read some of the things you wrote).

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

#127

Post by geerlingguy » Mon, Oct 19, 2020, 7:46 PM UTC

I take the good days and try to make them that much better by being more productive, trying to be 'there' for my family more that day, etc.

Because I know when the bad days come (sometimes more often than good), I'm going to have to take a break and sometimes see my productivity plummet to nothing.

I am also writing a book, collecting my sarcastic thoughts on my particular illness: https://leanpub.com/you-only-have-crohns-once — I find that one outlet I have is pretty heavy (but friendly) sarcasm, when I'm stuck in a hospital, doing testing, etc., and I like to write and share in hopes someone else can have a laugh at their own situation.

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

#128

Post by m3kw9 » Mon, Oct 19, 2020, 7:47 PM UTC

Depends, make sure you try everything as everyone is different. Tell yourself there is a limit, no one lives forever. Keep hopes up for a miracle cure. When you can’t do nothing about it or you did the best , cut out chunks of time to just ignore it by finding activities you really enjoy that isn’t hindered by your condition. Just zone out. Pretend everyone has your condition, how does that feel? Be grateful it isn’t another worse condition, be grateful for everything else that you can do. I’m just giving ideas

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

#129

Post by bluemax » Mon, Oct 19, 2020, 7:51 PM UTC

I was diagnosed with type 1 diabetes or LADA in my early forties and two things helped me deal with it. The hospital put me in a room in the oncology department. Seeing the other patients I was sort of glad I was there with 'just' diabetes and not cancer. This made it easier to accept.

After a couple of months of living with diabetes I created a simple app to enter the numbers, glucose level and insulin units, involved in managing diabetes. Among other things the app showed percentage scores of how much the glucose measurements were on target. That little bit of gamification was exactly right for me. Nowadays it's more like autopilot though.

Still it feels a bit awkward when I'm out having dinner with people that don't know I have this. In the first year or so after the diagnosis I would go to the bathroom to take the glucose measurement and insulin shot. Nowadays I explain the situation and take my shot sitting at the table. So far people have been cool about it.

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

#130

Post by DoreenMichele » Mon, Oct 19, 2020, 7:52 PM UTC

shock wrote: post #126

DoreenMichele wrote: post #112

Earlier quoted context omitted.

Unlike, say, your circulatory system or digestive system, your immune system is not a separate set of distinct and readily identifiable organs with a specific and isolated function of "immunity." Your skin is part of your so-called immune system. Your gut is part of your so-called immune system. Your respiratory tract is part of your so-called immune system. Figuring out that the system as a whole is generally design…

> my underlying condition cannot be fixed. Yet. I don't want to give you false hope, but I believe CRISPR-Cas9 to be a game changer of the sort that we will classify time are pre- and post- CRISPR-Cas9. Until the technologies to fix your genes become available, you're already doing the best you can to take care of your body (I've read some of the things you wrote).

What I'm doing is game changing. CRISPR may provide hope for other people with the kind of diagnosis I have, but my health is in good shape and I see no reason to take chances on something that could have serious and terrible side effects.

My biggest problem currently is that I'm dirt poor. Trying to solve that is my current focus.