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.
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.
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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  • —if it ain't one thing, it's another." Roseanne R.
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
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.
               
 
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!
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.  :(

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!
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.
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.