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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?

#141

Post by paperwasp42 »

specialist wrote: post #115
paperwasp42 wrote: post #32

Been living with a rare neuromuscular disease since birth. Might kill me early, might not. I've learned to cope with it in hundreds of ways, just like people cope with their career in hundreds of ways, or their kids, or their marriage. It's a central faucet of my life. It's destructive as hell to shove it aside and try to "forget about" all the small, daily issues. So I've learned to co-exist with it by doing the fol…

Ugh. I'm sorry for your circumstances. Sorry to everyone, really. But it's oddly nice to know I'm not alone. Many great replies. Covering most of what I'd say. Piggybacking on your reply with some "Yes, and...", because your advices are closest to my two cents. "Advocate for yourself. I was misdiagnosed six times before they finally figured out my issue." Same. Many times. I advise everyone to never accept "No". Some…

Great advice all around. I'll add that the fitness tracker has the added bonus of making you want to meet your "goals" on the tracker, which can sometimes be the difference between me taking a healthy walk or not.

As for choosing a supportive partner, I've found that it gets easier as I get older. Age matures people and gives them patience. I'm also lucky to have a partner who has also experienced serious health issues, so he truly understands at a deep level.

Finding him took time, probably more time than a healthy person would spend looking for a partner. But I am grateful every day that I didn't give up the search.

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

#142

Post by mmvs »

josefresco wrote: post #21

At 38 (almost 2 years ago) I was diagnosed with rheumatoid arthritis. I lived a relatively healthy, "normal" life until I woke with extreme joint pain one day. The diagnosis rocked my world. I went (and am going) through the usual stages of grief. Before I was diagnosed but after the symptoms appeared I went to a bad place. After diagnosis I still mourn for my old life. When I have a "flare" (joint pain) I dive into…

I'm very sorry to hear that. As someone who has arthritis my advice to you is to eat healthily, manage your stress, and don't forget about physical activity: therapy, walking, biking - listen to your body, and see what works for you. All the doctors I've been to said that the key thing to prevent the illness develop further is the activity.

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

#143

Post by paperwasp42 »

sickygnar wrote: post #100
paperwasp42 wrote: post #67

Earlier quoted context omitted.

Oh, hey, fellow epileptic! Couldn't agree with your comment more. I've also found that diet has a huge impact, and I'm fascinated by research into the gut microbiome and the giant impact it has on the brain. I also follow a low-carb diet, and I've found it helps a lot (even though it's a pain in the ass.) Fasting doesn't work quite as well for me, since I already have low blood pressure and sugar. Any tips for buildi…

I've never has issues with blood sugar, so I'm not sure if any of what I would do would work for you. I basically just eat 2-3 eggs for breakfast (100% no carb breakfast). Then I don't eat lunch until 2-3pm. I find I can pretty much eat whatever I want for lunch and dinner but I still try to keep it low/medium GI foods and opt for fattier stuff if I can. I don't have any problems with blood sugar, and I don't get cra…

Thank you so much for all the advice! It's really nice to know that shorter fasts can still have an impact on some people. This has encouraged me to try fasting again.

And huge congrats to you on reaching only 1-2 seizures a month. I know how much time, research, and mental energy goes into reducing seizures. That is a huge accomplishment!

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

#144

Post by [deleted] »

spaetzleesser wrote: post #93
runawaybottle wrote: post #5

You can’t let it dictate anything. If it hurts to go to the gym, still go. Find the constraints that allow you to do what you want to do without aggravating your body too much, and build some pain tolerance. Psychological tolerance is a must as well, but you almost have no choice but to develop that unless you literally want to never progress. This is advice for people that make it out of their critical treatment pha…

This is advice that may work for you but may be dangerous for others. My girlfriend used to have chronic pain and toughing it out simply want an option. It just made things worse. Your comment about finding the constraints of the body that don’t aggravate things too much is good though.

[deleted]

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

#145

Post by cpwright »

49yearsold wrote: post #99
cpwright wrote: post #91

Earlier quoted context omitted.

I was diagnosed when I was 30 (A1C of 13). After maxing out pills (7 a day between Metformin, Glimperide, Onglyza, Invokana), I went to multiple daily injections, and then a pump with CGM. The pump is life changing as far as getting better control. It still isn't perfect (latest A1C of 7.5), but it makes a big positive difference.

Thanks for sharing - at what age did you start insulin - if you don't mind sharing and how long it's been since you are on insulin/pump now?

I'm 38 now. I have been on the pump/CGM (MM670G) for just under three years. I was on pills for 2-3 years, at first the metformin and glimiperide were enough and I got my A1C back to the sixes; but I maxed those out and it was climing agian. Then maxed out Onglyza, then maxed out Invokana at which point I switched to the pens.

The problem with the pens is that I would need 25 units of basal insulin and 25 units of the rapid acting insulin. You can't "undo" your 24 hour basal injection; so if you don't eat enough carbs or exercise too much you can go low. The pens are also not nearly as precise as a pump for delivering the rapid insulin.

After my A1C climbed back, my endocrinologist prescribed the pump and CGM closed loop system. We did a blood test that showed I was T1, which was enough for United Healthcare to pay for the CGM and not just the pump.

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

#146

Post by gardenfelder »

Building on the comments of @notslow below, here's how I managed to defeat a chronic Leukemia dx some 32 years ago.

Borrowing from Sun Tzu, "know your enemy, and yourself".

Borrowing from Norman Cousins, "laugh your way to wellness".

Add to that the power of positive thinking, and those ideas helped.

It's not enough to just accept a dx, especially a life threatening one ("you have 2 to 5 years to get rid of this"); rather, in my experience, it pays to take ownership of your visitation; know all you can learn about it, and about how you are dealing with it.

Find the loopholes in your approach, and find something you can believe in; that belief, IMHO, is a component of whatever secret sauce will get you through the visitation.

In one case mentioned below, someone discovered an environmental cause - a mold. In my case, there were many other factors with which to deal; only those associated with my own behaviors and lifestyle were in my control.

I am back to dealing with a different chronic condition, using the same mindset, and recent data suggests I am on the right path. Thinking about writing a medium piece about these ideas.

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

#147

Post by febed »

notslow wrote: post #135
KKPMW wrote: post #119

Earlier quoted context omitted.

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.

I developed vitiligo a few months after moving into a new apartment which had a mild sewage leak. I'm pretty sure the apartment caused my condition as there is no other case of vitiligo in my family and it is known to be triggered by chemical irritants.

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

#148

Post by sickygnar »

paperwasp42 wrote: post #143
sickygnar wrote: post #100

Earlier quoted context omitted.

I've never has issues with blood sugar, so I'm not sure if any of what I would do would work for you. I basically just eat 2-3 eggs for breakfast (100% no carb breakfast). Then I don't eat lunch until 2-3pm. I find I can pretty much eat whatever I want for lunch and dinner but I still try to keep it low/medium GI foods and opt for fattier stuff if I can. I don't have any problems with blood sugar, and I don't get cra…

Thank you so much for all the advice! It's really nice to know that shorter fasts can still have an impact on some people. This has encouraged me to try fasting again. And huge congrats to you on reaching only 1-2 seizures a month. I know how much time, research, and mental energy goes into reducing seizures. That is a huge accomplishment!

As you know, this condition is totally unpredictable, so it may just be a temporary lull completely unrelated to my diet. I also feel obligated to leave the "I am not a doctor" disclaimer. And good luck with your seizures as well. They're so awful

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

#149

Post by mosseater »

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…

I had a chronic headache that lasted 17 years, so I feel your pain. I know you probably tried everything, but it might be worth trying the random thing that ended up getting rid of my headaches completely. 30mg of melatonin every night. Yes, this is 10x the recommended dosage of 2-3mg. But it turns out there's some random chemical imbalance in my brain causing these headaches. It's not that documented but there are studies.

This worked for me almost immediately after the 2nd night. The euphoria of not being in pain lasted months. From one person who lived in constant pain to another, don't give up!!

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

#150

Post by paperwasp42 »

sickygnar wrote: post #148
paperwasp42 wrote: post #143

Earlier quoted context omitted.

Thank you so much for all the advice! It's really nice to know that shorter fasts can still have an impact on some people. This has encouraged me to try fasting again. And huge congrats to you on reaching only 1-2 seizures a month. I know how much time, research, and mental energy goes into reducing seizures. That is a huge accomplishment!

As you know, this condition is totally unpredictable, so it may just be a temporary lull completely unrelated to my diet. I also feel obligated to leave the "I am not a doctor" disclaimer. And good luck with your seizures as well. They're so awful

Oh for sure, but I admire you for putting in the effort to at least try to improve your condition.

And disclaimer noted and appreciated. :)

Good luck to you as well, my friend! I'll keep my fingers crossed you eventually get down to 0 seizures a month.

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