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Author Topic: Five Things I Wish I’d Known Before My Chronic Illness  (Read 1246 times)

Carolina

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  • —if it ain't one thing, it's another." Roseanne R.
Five Things I Wish I’d Known Before My Chronic Illness
« on: February 19, 2019, 04:00:39 AM »
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Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol

Sharon

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Re: Five Things I Wish I’d Known Before My Chronic Illness
« Reply #1 on: February 21, 2019, 01:59:58 PM »
What I'd like to have known:
#1- You can't rely on doctors to diagnose or treat you.
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Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

Carolina

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Re: Five Things I Wish I’d Known Before My Chronic Illness
« Reply #2 on: February 21, 2019, 03:06:09 PM »
I agree, Sharon.

AND

#1 a.  You cannot depend on your doctor to be honest with you, or aware of everything in his/her field.

     b.  Do not be surprised if your doctor doesn't BELIEVE your symptoms, and rejects you as unmanageable and depressed, and even a hypochondriac. 

     c.  You may be blamed for whatever conditions you present.

     d.  Be prepared to fire doctors, be picky.  You deserve the best.

     e.  A major medical center with a teaching hospital may be your best bet for health care.

# 6  Find an on-line support group or two or three.   Don't give up 'til you find a home.

Regards, Elaine
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Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol

vrystaat

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Re: Five Things I Wish I’d Known Before My Chronic Illness
« Reply #3 on: February 22, 2019, 12:31:19 PM »
I totally agree with all the posts.
It is very hard to find Rheumatologists where I live. Some are quite good, but are lacking in certain areas.
Examples:
- they only see you for 20 minutes
-cannot comprehend our feeling sick all the time or our fatigue
-no physician seems to want the details of our illness
-if you are a complex case, don't even bother to see a private practice Rheumatologist
-"A major medical center with a teaching hospital may be your best bet for health care." I agree, but it is a hit or miss situation. Many are outstanding, some are rude, some are not interested       

I talked to the Chief of Rheumatology at a large academic Center. She was well aware of a shortage of Rheumatologists. Anyway, she was super-nice.
               
 
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Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

Sharon

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Re: Five Things I Wish I’d Known Before My Chronic Illness
« Reply #4 on: February 23, 2019, 04:37:28 PM »
Elaine- So true!

vrystaat- my experience as well!
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Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

BonusMom

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Re: Five Things I Wish I’d Known Before My Chronic Illness
« Reply #5 on: February 23, 2019, 07:52:13 PM »
If you have co-existing conditions, doctors will attribute your current complaint/symptoms to a different condition.  :(
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Deb 27

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Re: Five Things I Wish I’d Known Before My Chronic Illness
« Reply #6 on: February 24, 2019, 03:14:48 PM »
That was good. Thanks for sharing that with us Elaine!!!!

 Nobody understands a chronic disease like the people who have it.  Support groups like this are a lifesaver. I learned more on these than from any doctor, that's for sure!!!!

Thanks for the moderators and founders of Sjogrensworld, making support available to us!
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Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

SjoGirl

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Re: Five Things I Wish I’d Known Before My Chronic Illness
« Reply #7 on: February 26, 2019, 04:52:25 PM »
Thanks for sharing, I just posted this on my FB page. It's the best I can do because I still work and I fear revealing that I have several AI's. I worry that if I do share people will not hire me or will think I'm not up to a job.
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Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.
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