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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?

#151
post #97

Earlier quoted context omitted.

Incoming downvotes... Why should GP post at all then? Sounds like he or she has given up on something that some others have been able to defeat. I realize it’s hard to get over the idea that there isn’t a magic pill to “fix” you and allow you to continue treating your body/mind like a garbage can, and yah, big changes are hard. Looking for pity maybe?

To answer the original question? " I realize it’s hard to get over the idea that there isn’t a magic pill to “fix” you... " Is that deliberate irony?

Found another one...

I meant it unironically when I wrote it. It’s a garbage attitude- we aren’t machines, meatbag

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

#152
I have migraines. 1 day out of 5 (on average) I have to take a triptan pill that has quite nasty side effects on me. Those however are still better than what happens if I don't take the pill. The condition also imposes some restrictions on the food I can eat and on my sleep schedule. I can't drink alcohol at all. I can't function in poorly ventilated areas.

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

#153

I guess I can provide an unusual perspective. I've lived with a chronic kidney illness since I was 14. Thankfully my illness does not manifest outwards and I am able to hide symptoms quite well. Even when my kidneys failed, I was able to schedule my life around my dialysis appointments. One of the biggest things that I notice shift as I grow older is that I no longer package my illness and my life separately. I think…

Can I contact you ? If so how?

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

#154

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…

> This won't cure it (don't listen to people that say it will)

I've learned not to listen to people that say that I can't or it won't.

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

#155
post #126

Earlier quoted context omitted.

> 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.

> My biggest problem currently is that I'm dirt poor.

You wrote in 2009 that "Rewarding people for having serious problems tends to grow those problems". Based on what I read written by you, you are a pretty smart person, so, assuming that you aren't poor since a short time, what is your reward for being poor?

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

#157
post #155

Earlier quoted context omitted.

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.

> My biggest problem currently is that I'm dirt poor. You wrote in 2009 that "Rewarding people for having serious problems tends to grow those problems". Based on what I read written by you, you are a pretty smart person, so, assuming that you aren't poor since a short time, what is your reward for being poor?

As stated above, I have a serious genetic disorder. It's supposed to be killing me and it's supposed to cost up to a quarter of a million dollars annually to treat under conventional medical approaches.

There's no reward for being poor. My poverty hasn't grown. I used to be homeless. I've gotten myself off the street.

I've saved an estimated $9.5 million over the last 19 years in terms of what should have been spent on medical care for me and my oldest son but wasn't because of the diet and lifestyle based approach we have pursued.

I would like to get support for what I'm doing via Patreon. I face credibility challenges and sexism is a factor and yadda.

I would appreciate it if you would leave me alone. Someone who claims to be familiar with my writing and can reference something I said in 2009 but has zero understanding of the reasons I remain poor and then asks questions like this that amount to victim blaming isn't something I need in my life at all.

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

#159
post #60

Earlier quoted context omitted.

Fasting should help. A friend of mine reversed the process already in his 50s

Intermittent fasting? 16/8 or something different? Thanks for any info you could share. I know this is not health advice forum - but still it is encouraging to hear positive anecdotes/references from others.

He started to do one day of fasting once a week, and then occasional 2 to 5 days once a more prolonged period. making such efforts also invited more discipline with carbs and made easier to reduce number of meals per day to two. Not sure about vegetarianism, - another friend had to abandon it in order to overcome diabetes.

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

#160
I have eosinophilic esophagitis, which is a rare autoimmune condition. I am both lucky and unlucky, in that most sufferers discover they have this later in its progression, when they have difficulty swallowing, but I discovered mine early due to near-constant and severe left side chest pain. This is an unusual presentation, but it goes away when we get my EoE into remission and comes back when I relapse, so we're pretty sure it's the cause.

I have come in and out of remission over the years. Unfortunately, my case has been quite difficult to keep in remission, so I live with left-side chest pain most days. There are a wide variety of other exciting symptoms.

Before I got sick, I was a healthy person. I worked out five days a week. I traveled internationally. I ate widely. These have all become much, much harder.

So what I would say to people who are not chronically ill: it can happen to anyone. It can happen any time. All that stuff you think happens to other people, it can happen to you. I literally woke up one day in pain, and that was it. That was the end of the good part of my life. One day I was fine, the next day I was permanently not fine. I was 27. I worked very hard through my 20s thinking I had time to enjoy life. Don't put off living. This can happen to you.

On the whole, as others have said: one day at a time. You just keep going. You will not believe how much suffering you will be able to put up with and keep going. On bad days, I tell myself that I can still go for a walk. I can still watch a sunset. I can still pet a dog. Get a therapist. Talk to the therapist.

Other things that have helped me: extremely careful dietary control. Reminding myself of the hundreds of extremely more horrible diseases I don't have. A care team of doctors who I trust, having replaced the doctors I didn't trust (for instance, the first doctor I saw, who told me it was all in my head).

Chronic illness is a very hard experience. I do not recommend it.

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