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

@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

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@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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@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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@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

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@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.

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@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

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@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

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@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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@gingerw

@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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@gingerw I love your term MEQs! I’ll have to remember that! I included a photo of the fabric portrait of my grandson—he’s 5. Becky

5101B0FC-5790-4061-854F-01CB1DB79C32

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@becsbuddy

@gingerw I love your term MEQs! I’ll have to remember that! I included a photo of the fabric portrait of my grandson—he’s 5. Becky

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@becsbuddy How fun is that! Fused, needle turn, or machine applique? That will be an heirloom, for sure!
Ginger

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@becsbuddy

@gingerw I love your term MEQs! I’ll have to remember that! I included a photo of the fabric portrait of my grandson—he’s 5. Becky

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@becsbuddy That's great! Thanks for sharing it!

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@gingerw

@becsbuddy How fun is that! Fused, needle turn, or machine applique? That will be an heirloom, for sure!
Ginger

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@gingerw. Thank you for liking my quilt! The pieces are fused because the original focus of the class was on using value. Most people in the class used flesh colors, but I picked blue because I always have to be different. He does look a bit wild n crazy!

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@becsbuddy

@gingerw. Thank you for liking my quilt! The pieces are fused because the original focus of the class was on using value. Most people in the class used flesh colors, but I picked blue because I always have to be different. He does look a bit wild n crazy!

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@becsbuddy Very artsy looking. You got my vote for an interesting piece, bet it made others think they should have tried that!
Ginger

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@becsbuddy

@gingerw I love your term MEQs! I’ll have to remember that! I included a photo of the fabric portrait of my grandson—he’s 5. Becky

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@becsbuddy
How exceptional! I'm so glad you shared it.

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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

Jump to this post

Would love to know where you got the fluid. Am in pain most of the time. Thanks in advance for your generous offer in your post to share the information. Carol

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