1. < Neuropathy

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

Posted by elained @elained, Feb 19, 2019

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

Interested in more discussions like this? Go to the Neuropathy Support Group.

sadie168 | @sadie168 | Mar 20, 2019

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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1 reply
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Jennifer, Volunteer Mentor | @jenniferhunter | Mar 20, 2019
In reply to @sadie168 "Thank you for posting the article. I can relate to your additional comments as well. I..." + (show)
@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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1 reply
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Becky, Volunteer Mentor | @becsbuddy | Mar 20, 2019
In reply to @noahs "@elained .. I join the others in thanking you for sharing this article. I definitely identified..." + (show)
@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”.

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@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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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 20, 2019
In reply to @jenniferhunter "@sadie168 While you are at Mayo, take some time to enjoy the atmosphere there and the..." + (show)
@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.

Jump to this post

@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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1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Mar 21, 2019
In reply to @becsbuddy "@jenniferhunter I always like your positive comments! When you suggested that I do something creative to..." + (show)
@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!

Jump to this post

@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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1 reply
JK | @contentandwell | Mar 21, 2019
In reply to @becsbuddy "@noahs I so agree with your term “ roller coaster “! I feel like I’ve been..." + (show)
@becsbuddy

@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

Jump to this post

@becsbuddy Those of us on immunosuppressants really do need to be careful. I caught Legionairre's in December 2017 which made me very conscious of just how careful I need to be.
It is tough to accept the "new normal", and sometimes I feel like I have every problem possible and then I realize I am throwing myself a "pity party" and just get over it. Yep, I have some problems, but things could be so much worse. I am grateful for what I now have and what I am able to do. I exercise at my health club about 6 days a week, maintain our home and do all of the shopping and cooking, and help others in whatever ways I can, so I figure I am functioning awfully darned well.
JK

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1 reply
crhp194 | @crhp194 | Mar 21, 2019
In reply to @donnariley "I have struggled with pain from RA for 21 years and discovered I have Coronary Artery..." + (show)
@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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Donna, I would love to,know more about your particular brand of CBD and dosage. I have used the oil which has some effect but not the way you described your pain relief. Thanks for posting this.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 21, 2019
In reply to @contentandwell "@becsbuddy Those of us on immunosuppressants really do need to be careful. I caught Legionairre's in..." + (show)
@contentandwell

@becsbuddy Those of us on immunosuppressants really do need to be careful. I caught Legionairre's in December 2017 which made me very conscious of just how careful I need to be.
It is tough to accept the "new normal", and sometimes I feel like I have every problem possible and then I realize I am throwing myself a "pity party" and just get over it. Yep, I have some problems, but things could be so much worse. I am grateful for what I now have and what I am able to do. I exercise at my health club about 6 days a week, maintain our home and do all of the shopping and cooking, and help others in whatever ways I can, so I figure I am functioning awfully darned well.
JK

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@contentandwell Such great suggestions! I think my problem is I’m trying to go too fast. It’s taken me a year to get to the point where I can cook, some, and do lighter chores. Hopefully, I can start driving again soon, then I’m off to the gym! NEVER thought I’d find myself in this position of not being active and having to pace myself. 😞 But, you’re right, I have it so good compared to some. Thank you for your advice. Becky

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 21, 2019
In reply to @jenniferhunter "@becsbuddy Thank you! I always look for the positive. Do you embroider? You could embroider a..." + (show)
@jenniferhunter

@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.

Jump to this post

@jenniferhunter Thank you for your reply! I’m actually hoping to do an art quilt because I love doing them. Right now I’m attempting a fabric portrait of my grandson. It’s been hard, but has gotten me working again! I have the quilt sketched out so now I can just think. Takes me a long time to think and plan. Becky

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 21, 2019
In reply to @becsbuddy "@jenniferhunter Thank you for your reply! I’m actually hoping to do an art quilt because I..." + (show)
@becsbuddy

@jenniferhunter Thank you for your reply! I’m actually hoping to do an art quilt because I love doing them. Right now I’m attempting a fabric portrait of my grandson. It’s been hard, but has gotten me working again! I have the quilt sketched out so now I can just think. Takes me a long time to think and plan. Becky

Jump to this post

@becsbuddy Having something to focus on really helps to distract us from our issues/pains/everyday struggles. Your portrait quilt of your grandson sounds like a winner! Do you have it sketched out where he is doing something he enjoys [not knowing how old he is]? I know with my quilts and artwork having something pictured in my mind and then challenging myself, or marveling at the outcome, to see how different it is from what I had pictured it is such a treat. I have several MEQs which stands for Mind's Eye Quilts that are yet to be done. I have the fabric, I have the ideas, sometimes just don't have the motivation or the time.
Ginger

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