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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?

#131
post #108
post #76

Earlier quoted context omitted.

Have you looked into surgery for the reflux? I had something called "transoral incisionless fundoplication (TIF)" several years ago. It seemed to reduce some of my symptoms somewhat at first, but mostly regressed after several months, and never actually stopped my nighttime breathing problems/throat closing up. So I have been thinking I should try this thing called LINX. But I am really not sure if that one is better…

I did initially, but haven't explored it in a while. One of the fun aspects of Barrett's is that, in order to develop it, the issue has to have been present and untreated for quite a while. And the erosive effects by that point are too severe and act as a contraindication for most surgical procedures, including LINX it appears[1]. I also have a hiatal hernia which acts as another contraindication to most surgical the…

Right, surgery is no joke. That is why I initially tried the TIF thing because it was minimally invasive laparoscopic including repair of a small hernia and I was out the next day. But it didn't stick, and didn't work for my breathing issues.

But I have been very hesitant to try another different surgery because it has risks. Just some days when I wake up and my throat is closed up and I am tired etc. I second-guess that. For me Nexium and Omeprazole handle almost all of the actual heartburn. It's just the throat closing up and breathing issues especially when I lay down and sometimes more significant fatigue after meals that don't really go away.

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

#132

I suffered from terrible psoriasis. The medicine was expensive ($100 copays) and it was constantly itchy, flaking, and ugly. In my case, it was stress related. I quit my job, took another job that paid more but with less stress. And everything disappeared over the course of two weeks. I realize this doesnt work for every disease, but some are stress related.

My 1-2x weekly migraines are now ~1x a month, ever since switching to a lower-stress job.

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

#133

Earlier quoted context omitted.

> I find that it's better to say as little as possible, you have the right to privacy after all. Your coworkers don't have to know the details of your life. I recommend not going into specifics about your condition if you choose to say anything at all about it. You will come across people who will have opinions about it, despite not having to live with it. Also, be aware that it is illegal for your workplace to pry a…

In my experience it is best to limit sharing about even having an issue to an absolute minimum. You'll probably have far more detractors than supporters. Be very selective. People will unpleasantly surprise you unfortunately. Most people are disability skeptics. If you have to go to HR to get accommodations, you should get a different job. In my experience, when a manager won't make accomodations without that, they w…

> If you have to go to HR to get accommodations, you should get a different job. In my experience, when a manager won't make accomodations without that, they won't do it with it or they'll hold it against you.

I'd be careful of this approach if there is something like a company rule that all accommodations must go through HR.

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

#134
My SO has a chronic pain disorder. So, I'll try to relate my experiences as the SO of person with a chronic illness. The exact cause is known, but there really isn't much to be done about it. I'll skip the specifics of the disease, but suffice to say, it is on the cusp of being classified as a 'suicide disease'.

For my SO, it's a day-to-day thing. Sometimes it goes down to minute-to-minute. But there is always another minute and another day with less pain. Keeping focused on the good days seems to help my SO.

Spirituality and religion have had mixed success. Spirituality has helped more than religion, so to speak. Organized religion may be good for some, but we have not had luck in finding a community that helps my SO. Church folks kinda get gossipy and start expecting things of my SO that my SO can't provide during painful times.

Love and support from friends and family have been essential to my SO. Limiting contact with family that is non-supportive has been good. Surprisingly, covid-time has been a boon on this front. Find people that actually support you and be quick to limit contact with unsupportive people.

Staying up to date on the latest medical new has been mixed. One can obsess over the newest studies. So we try to look into it about once avery 2-3 months for anything new.

Support groups have mostly been a wash. Online groups tend to be mostly people that are new to the disease. Over time they come to accept the diagnosis and the restrictions on life that come with the disease. But it can be tiring trying to help people still in denial. They also tended to become ... well ... suicide pacts, at least with my SO's disease. Keeping a good eye on your media consumption is essential.

Real Life support groups are hard to find as my SO's disease is pretty rare. We've gone to support groups for related diseases and those did help my SO. But as they were for a related disease and not my SO's, they were of limited utility outside of human connection.

Life expectations have been readjusted. It's not an easy process, and you need to give it the proper time to grieve. The grieving process takes as long as it takes, but you must take it. Finding new goals and dreams in your life is an important part of this. These goals must be meaningful and achievable to you for them to be effective. It's really hard to meet both criteria if you've not finished mourning your past conception of your life.

I'd be happy to answer any other questions as well. Good idea on reaching out and trying to get some help. I know that is a tough step to take. Your courage to do so is inspiring!

In general, my SO takes every day as it comes and we have to accept the realities of our lives as they are. It's not easy, but it's a lot easier with friends and family.

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

#135
post #119
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…

Can I ask what symptoms you had that were caused by mold?

Mold illness is nasty. Each of the three of us experienced different symptoms. Some of our symptoms included increased food sensitivities, brain fog and neurological symptoms, mood swings, random muscle aches ("knots"), occasional random sharp pains, redness and/or swelling of hands or feet. None of those were particularly consistent but did reoccur over time.

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

#136
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.

No, the symptoms haven't gone away yet, but we are improving. We moved out of our house 6 months ago. Other folks we talked to that have dealt with mold have taken 1 year or more to get back to some semblance of normal

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

#137
post #125
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/

Wow, yes. All of that. That is basically our story.

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

#138
post #131
post #108

Earlier quoted context omitted.

I did initially, but haven't explored it in a while. One of the fun aspects of Barrett's is that, in order to develop it, the issue has to have been present and untreated for quite a while. And the erosive effects by that point are too severe and act as a contraindication for most surgical procedures, including LINX it appears[1]. I also have a hiatal hernia which acts as another contraindication to most surgical the…

Right, surgery is no joke. That is why I initially tried the TIF thing because it was minimally invasive laparoscopic including repair of a small hernia and I was out the next day. But it didn't stick, and didn't work for my breathing issues. But I have been very hesitant to try another different surgery because it has risks. Just some days when I wake up and my throat is closed up and I am tired etc. I second-guess…

While I've had similar issues, I never particularly attributed them to the GERD stuff directly. Most of those symptoms ended up getting indirectly treated while addressing other issues.

Feel free to reach out if you want to talk further (email is in profile). There are a few things I'd recommend that may potentially help, but starts to get a bit too specific for getting into here.

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

#139

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 helped, so I went. It has literally changed my life. I had chronic headaches since I learned how to speak (they were not so often then). Me and my family had tried everything. I had progressed to the point where it was 24/7 pain, highly depressed, could not work/go to university. Within the month my pain was down 25%, within a year I was 50% better overall, no more 24/7 pain, started studying. Now I'm about to graduate. I still go once a month but am 90% better. I'm also not downing pills like crazy. I was on 3-4 a week (this was just to numb the bad episodes), now down to 2-3 a month (mostly due to me overexerting myself).

It does not work for everyone (it helped some family members with back pain but not others or not immediately so they stopped going), but can't hurt to try. It is very similar to going to a chiropractor but "softer" is how I would describe it. There is not as much cracking and popping. Half is stretches. There's lots of checking specific points for pain, also the whole body is looked at. And unlike chiropractors or massage therapists there is a noticeable change in mobility and posture and other things (for me decreased light sensitivity) after a visit.

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

#140
post #125

Earlier quoted context omitted.

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

Wow, yes. All of that. That is basically our story.

My email is in my profile if you want to reach out.
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