Five Things I Wish I’d Known Before My Chronic Illness

Posted by elained @elained, Tue, Feb 19 6:12am

This article is in today’s New York Times: Five Things I Wish I’d Known Before My Chronic Illness.
https://www.nytimes.com/2019/02/18/smarter-living/five-things-i-wish-i-knew-chronic-illness-crohns-disease-ibd.html
I hope this link works. If not, just go to today’s NYT and Google the title of the article.

Regards, ElaineD

@jmjlove

A person can prepare for a possible event. But when a body fails in a dramatic fashion all you can do is deal with the fall out. Put the pieces back together and limp along. So many conditions have no cure. Just a few tips, maybe even too obvious to mention, but this post got me thinking.
1. Move any and all parts that still move
2. Develope an interest apart from medical issues. At first I was obsessive. Fine. But move on. If we're alive there's still life to live.
3 Give. If all you can do is read, then share books, or read to a kid. If you can laugh, share a joke. If you can bake, then share with someone who cant. There is so much to give. Even just conversation. Lot of lonely people out there, maybe within your own family.

Yep. Simple stuff. Kinda no brainer, I know. No matter what my struggles are, life isn't just about me. Gotta remind myself.

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you know that is great advice , the best Ive seen on here for a while, I would like to think that I am doing all of these things but I am just going to do them better, thank you jmjlove @jmjlove,

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@seanivor

you know that is great advice , the best Ive seen on here for a while, I would like to think that I am doing all of these things but I am just going to do them better, thank you jmjlove @jmjlove,

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@seanivor….thank you. A part of me hates to even talk the talk because half the time I don't walk the walk. But I guess that means half the time I do, huh? Anyway, I am no posterchild for overcoming adversity. I don't want to just exist, though. I want to live . Can't do that very well from my recliner.

I see you suffer very much from neuropathy. Sorry to hear that. I do too. It's the trigeminal nerve for me, so I CAN wear jeans, lol! Yep, read what you wrote.

God bless you and your dumb nerve. (Never talk nice about a misbehaving part)

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@jmjlove Great suggestions! I need to do the best I can with what I have and where I am. I did get out my quilting supplies and I’m working on a project. What has taken me 6 weeks, others have done in 4 days, but so what?!

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@becsbuddy

@jmjlove Great suggestions! I need to do the best I can with what I have and where I am. I did get out my quilting supplies and I’m working on a project. What has taken me 6 weeks, others have done in 4 days, but so what?!

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@becsbuddy…just acknowledging facts and truths is a step forward, a step away from our sorry condition. Who cares if we take longer on any given task? No one knows the monumental efforts we put into simple tasks. How could they? Quilting is so peaceful, such a beautiful hobby. If I have talent for a particular craft, and I'm able, though it takes me forever, I find deep satisfaction doing it. That satisfaction translates into a better attitude, which translates into much better coping with my deficits and keeps me from turning sour and unpleasant to be around.

Good for you! God bless.

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@becsbuddy I concur it is really important to find things to take your mind off the annoying symptoms. I rekindled my interest in guitar playing since I have retired and the concentrated effort helps me find joy in time passing as I learn a new song or technique. Not that you will ever see me on America's Got Talent but it is good enough for me. I do caution to try to understand your triggers that bring on symptoms. This can be hard. I find getting in situations that bring high stress or unreasonable emotional engagement really can cause the tingling or sharp sticking pains to start. So I learn to chill out a bit more, putting potential escalating stress activities out of my choice, just to accept there are some things I should not do with this disease. No Road Rage here, ever!!! Good luck to you on your journey to find comfort.

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In reply to @bandit102847 "@david33" + (show)

Hello, @bandit102847 – we may have missed the rest of your message and reply to @david33, as it didn't all appear on the site. I believe you had some thoughts you wanted to share about something you'd wished you'd known before a chronic illness?

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@elained .. I join the others in thanking you for sharing this article. I definitely identified in the whole article and the knowledge empowered me to rethink how I should deal with my autoimmune. After reading your post on March 11, I decided to join MayoConnect. And I continue to learn from the daily discussions posted. Since the writer said taking care of your mental health is just as important as addressing your primary health issues, I have shared your link with my psychiatrist. Sadly today
My autoimmune is flaring up caused by the tapering of my Prednisone. As stated in the article, chronic illness is a roller coaster and what works one day won’t work the next. I pray for everyone with
Chronic Illness … that we find the best way to live our “new normal”.

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I have struggled with pain from RA for 21 years and discovered I have Coronary Artery Disease in 2010 following a heart attack and triple bypass surgery. I have read so much during the past decade regarding both. My biggest complaint has always been joint pain due to inflammation. Ive tried it all…meds, chiropractor, image guided injections, etc. Ive missed out on so many activities over the years. About 6 weeks ago i was blessed to be lead to something new through a good friend i grew up with. I was skeptical at first but trusted her as she had great success with fibromyalgia and RA pain. Its a new CBD fluid (not oil) that is being legally produced by a solid US company (legal with Farm Bill passing in Dec. 2018). Im so happy to say I have no pain now and Im living life again. Happy to share info with anyone who would like to know more. Wishing health and wellness to all. Donna in Texas

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@donnariley

I have struggled with pain from RA for 21 years and discovered I have Coronary Artery Disease in 2010 following a heart attack and triple bypass surgery. I have read so much during the past decade regarding both. My biggest complaint has always been joint pain due to inflammation. Ive tried it all…meds, chiropractor, image guided injections, etc. Ive missed out on so many activities over the years. About 6 weeks ago i was blessed to be lead to something new through a good friend i grew up with. I was skeptical at first but trusted her as she had great success with fibromyalgia and RA pain. Its a new CBD fluid (not oil) that is being legally produced by a solid US company (legal with Farm Bill passing in Dec. 2018). Im so happy to say I have no pain now and Im living life again. Happy to share info with anyone who would like to know more. Wishing health and wellness to all. Donna in Texas

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Please let me know co name, website, etc.
I would love some relief!

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@donnariley

I have struggled with pain from RA for 21 years and discovered I have Coronary Artery Disease in 2010 following a heart attack and triple bypass surgery. I have read so much during the past decade regarding both. My biggest complaint has always been joint pain due to inflammation. Ive tried it all…meds, chiropractor, image guided injections, etc. Ive missed out on so many activities over the years. About 6 weeks ago i was blessed to be lead to something new through a good friend i grew up with. I was skeptical at first but trusted her as she had great success with fibromyalgia and RA pain. Its a new CBD fluid (not oil) that is being legally produced by a solid US company (legal with Farm Bill passing in Dec. 2018). Im so happy to say I have no pain now and Im living life again. Happy to share info with anyone who would like to know more. Wishing health and wellness to all. Donna in Texas

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@donnariley In the interest of letting us learn about this CBD liquid could you just give company or product name without a hyper link? This would let us in the community learn on our own. Thanks

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Thank you for posting the article. I can relate to your additional comments as well. I allowed the medical system to frustrate me so badly that I accepted there were no answers, and this was just how my life would be. Last spring I had to force myself to get back into this medical circus. I am taking the leap of faith and going to MAYO in a few weeks. Not having answers has been the most difficult part of this very long journey. I just recently joined connect and it’s sad that people are battling so many challenges, but it’s nice to know I’m not alone.

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@sadie168

Thank you for posting the article. I can relate to your additional comments as well. I allowed the medical system to frustrate me so badly that I accepted there were no answers, and this was just how my life would be. Last spring I had to force myself to get back into this medical circus. I am taking the leap of faith and going to MAYO in a few weeks. Not having answers has been the most difficult part of this very long journey. I just recently joined connect and it’s sad that people are battling so many challenges, but it’s nice to know I’m not alone.

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@sadie168 While you are at Mayo, take some time to enjoy the atmosphere there and the artwork and music (they have pianos that people play). I have been to the Rochester campus and love it there. To me, it feels like I'm not going to a doctor's office. Write down your questions. Every person I saw there was kind and friendly as well as good at what they do, so you'll be in good hands. You can get a good sense of what it's like if you watched the Ken Burns documentary on Mayo. It talks about the history and has patient stories. I've had years without answers too and that is hard, but keep advocating for yourself. It makes a difference. I did find answers at Mayo and help that I couldn't find locally at home. I would also encourage you to read research about your health issues.

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@noahs

@elained .. I join the others in thanking you for sharing this article. I definitely identified in the whole article and the knowledge empowered me to rethink how I should deal with my autoimmune. After reading your post on March 11, I decided to join MayoConnect. And I continue to learn from the daily discussions posted. Since the writer said taking care of your mental health is just as important as addressing your primary health issues, I have shared your link with my psychiatrist. Sadly today
My autoimmune is flaring up caused by the tapering of my Prednisone. As stated in the article, chronic illness is a roller coaster and what works one day won’t work the next. I pray for everyone with
Chronic Illness … that we find the best way to live our “new normal”.

Jump to this post

@noahs I so agree with your term “ roller coaster “! I feel like I’ve been on one for 18 months and I don’t like roller coasters! I was doing pretty well and then, I got the flu because of my immunocompromised system. The articles about kindness to yourself have been very helpful. I’m sorry you’ve had a flare-up! I keep trying to do the same things I always did, just in a different way. Takes forever to accept a new normal. Becky

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@jenniferhunter

@sadie168 While you are at Mayo, take some time to enjoy the atmosphere there and the artwork and music (they have pianos that people play). I have been to the Rochester campus and love it there. To me, it feels like I'm not going to a doctor's office. Write down your questions. Every person I saw there was kind and friendly as well as good at what they do, so you'll be in good hands. You can get a good sense of what it's like if you watched the Ken Burns documentary on Mayo. It talks about the history and has patient stories. I've had years without answers too and that is hard, but keep advocating for yourself. It makes a difference. I did find answers at Mayo and help that I couldn't find locally at home. I would also encourage you to read research about your health issues.

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@jenniferhunter I always like your positive comments! When you suggested that I do something creative to work through this journey I’m on, I thought what a good idea. I’ve been pondering what kind of quilt I could design. Maybe with some of your positive prompts…… We’ll see!

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@becsbuddy

@jenniferhunter I always like your positive comments! When you suggested that I do something creative to work through this journey I’m on, I thought what a good idea. I’ve been pondering what kind of quilt I could design. Maybe with some of your positive prompts…… We’ll see!

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@becsbuddy Thank you! I always look for the positive. Do you embroider? You could embroider a quote you like and make something out of that like a pillow or a quilt if you're really inspired. There are also commercial embroidery places that can put it on something. They usually do hats and shirts. If you know anyone with a fancy sewing machine that does this, perhaps they could help. I had someone do that for me and put a baby's name on a quilt. The quilt was a quilted panel of yardage from a fabric store, and she just embroidered the name and finished the edge. It turned out great and made a nice gift at the baby shower.

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