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.

elained | @elained | Feb 21, 2019
In reply to @becsbuddy "@hopeful3350. Oh, yes. The part that said you grieve a version of yourself that doesn’t exist..." + (show)
@becsbuddy

@hopeful3350. Oh, yes. The part that said you grieve a version of yourself that doesn’t exist anymore. I’m working on finding a new ‘me’ who likes to do the same things, only much slower.

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Oh @becsbuddy! I sort of adjust to 'the new normal', only to have it change, and I'm in a 'new new normal!"

Because the really active healthy 'me' slipped away so slowly, I didn't even know what was going on. I blamed myself for getting slower, tripping, being unable to ride my new bike, or climb up hills. By the time I actually had my diagnosis, my old self was lost in the dust, over 4-5 years.

In addition I developed a HOST of other conditions in those 4-5 years, that made my life difficult, particularly the severe anemia, which is exhausting. Now I take iron twice a day, no more anemia. But I toured China in 2007 with the onset of severe PN, severe anemia, chronic UTIs. I waited on the steps of every monument, temple, whatever, while everyone else climbed up and went in.

By the time I had a diagnosis of profound PN in 2010 I was THRILLED to know what was going on. However, the doctor wanted to rule out brain tumors (!), MS, spine problems, and a ton of other things. And of course no cause was found and nothing could be done. I developed several more neuropathies in the next 9 years.

The only thing I can do now is assume that the new normal is the normal I will have NOW. And not worry about what comes next.

Regards, Elained

REPLY
beryl | @beryl | Feb 22, 2019
In reply to @elained "There are some points I would add: 6. You may not get an accurate diagnosis or..." + (show)
@elained

There are some points I would add:

6. You may not get an accurate diagnosis or accurate treatment from the first doctor(s) you visit. Not all doctors know everything about their own speciality, nor do they know when to say "I don't know". Which leads me to 7:

7. You may even be dismissed by doctors who don't know, can't say they don't know, and don't want to be bothered by a 'complex patient'.

8. You may have to fire several doctors (or kiss a lot of 'frogs', as it were). The is time consuming, exhausting, costly, and YOU are the one who is sick and doesn't have the energy for this, in the first place. We all just want to throw ourselves on the first medical professional we meet and hope for our savior. It just doesn't work this way most of the time. Prepare to be BLAMED for whatever is going on!

9. Seek out medical treatment from a major medical center with a medical school and a teaching hospital. You are more likely to get the proper diagnosis and treatment (if there IS treatment) in that setting.

10. Seek out a community of those with your 'condition(s)'. You may have to shop around, all communities are not the same. Since you may have a 'rare condition' your community will more likely to be on line.

11. You will have to keep the records, coordinate your care, educate your helpers, and generally direct the show. Keep a daily diary so you can back track to pinpoint exactly what changed or what developed. If you're lucky you have someone in your life to help with all of this. That person should go to all appointments and tests and treatments, and stay with you in the hospital.

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@beryl .....Thankyou for posting this advice I am sure it will help.....following each step is helpful,to someone that is lost and doesn't know what to do next .....also explains why , in some cases, they come away with a unhelpful visit to a Doctor.....Beryl

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julesmaree | @julesmaree | Feb 22, 2019

Ive tried to unsubscribe with each email that comes up (around 20 a day) and they keep coming! There seems to be something wrong because it just won’t unsubscribe me either. I want to read people’s posts but just don’t want each individual’s comments being emailed to me.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 22, 2019
In reply to @julesmaree "Ive tried to unsubscribe with each email that comes up (around 20 a day) and they..." + (show)
@julesmaree

Ive tried to unsubscribe with each email that comes up (around 20 a day) and they keep coming! There seems to be something wrong because it just won’t unsubscribe me either. I want to read people’s posts but just don’t want each individual’s comments being emailed to me.

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Hello @julesmaree -- It's easy to stop all email notifications. Here's a link with the step by step instructions from the Get Started on Connect guide. Also, you can access this guide from any Connect page by scrolling to the bottom and clicking the Get Started on Connect link in the left column.
https://connect.mayoclinic.org/get-started-on-connect/#stop-restart-notifications

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 23, 2019
In reply to @julesmaree "Ive tried to unsubscribe with each email that comes up (around 20 a day) and they..." + (show)
@julesmaree

Ive tried to unsubscribe with each email that comes up (around 20 a day) and they keep coming! There seems to be something wrong because it just won’t unsubscribe me either. I want to read people’s posts but just don’t want each individual’s comments being emailed to me.

Jump to this post

@johnbishop

REPLY
julesmaree | @julesmaree | Feb 23, 2019
In reply to @johnbishop "Hello @julesmaree -- It's easy to stop all email notifications. Here's a link with the step..." + (show)
@johnbishop

Hello @julesmaree -- It's easy to stop all email notifications. Here's a link with the step by step instructions from the Get Started on Connect guide. Also, you can access this guide from any Connect page by scrolling to the bottom and clicking the Get Started on Connect link in the left column.
https://connect.mayoclinic.org/get-started-on-connect/#stop-restart-notifications

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Thanks John, I’ll give it a go.

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2019

Hi @eddieray, welcome to Connect. Thank you for posting. Are you able to share a little about your chronic illness or what is your biggest obstacle? I have idiopathic small fiber peripheral neuropathy with no pain, just numbness but that has changed a lot of what I can and can't do anymore. One of my biggest hurdles is not wanting to come to terms with my limitations.

John

REPLY
1 reply
judypall | @judypall | Mar 10, 2019
In reply to @johnbishop "Hi @eddieray, welcome to Connect. Thank you for posting. Are you able to share a little..." + (show)
@johnbishop

Hi @eddieray, welcome to Connect. Thank you for posting. Are you able to share a little about your chronic illness or what is your biggest obstacle? I have idiopathic small fiber peripheral neuropathy with no pain, just numbness but that has changed a lot of what I can and can't do anymore. One of my biggest hurdles is not wanting to come to terms with my limitations.

John

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I do not have numbness. Just pain. Tingling and occasional burning. Plus I just done generally feel well. Heavy head feeling.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2019
In reply to @judypall "I do not have numbness. Just pain. Tingling and occasional burning. Plus I just done generally..." + (show)
@judypall

I do not have numbness. Just pain. Tingling and occasional burning. Plus I just done generally feel well. Heavy head feeling.

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@judypall, are you taking any medications for the neuropathy? Also have you discussed the symptoms of your heavy head feeling with your doctor?

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