Brain damage
Liver damage
Lung damage
Kidney damage
Side-effects
Rheumitlogist
Endocrinologist
ENT
Surgery
Biopsy
Sleep
Incurable
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Forum Admin
Brain damage
Liver damage
Lung damage
Kidney damage
Side-effects
Rheumitlogist
Endocrinologist
ENT
Surgery
Biopsy
Sleep
Incurable
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
Forum Member Map -- world map for you to put a stickpin of where you are located....
Registered Member
Fear
indescribable
you look good
swollen
bronchoscopy
sadness
loss of esteem
struggle
creatninine
Dx Aug, 2009 Remission June 2010 until 8/1/2014
Registered Member
invisible illness
looking well
rare
potentially fatal/life threatening
SUCKS
Keep Smiling
Michelle
Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS
Registered Member
unpredictability
uncertainty
life threatening
rare
misunderstood
scary
chronic
systemic
Anne, dx'ed April 2011
Registered Member
"uncertainty" was the first word that came to mind for me, Anne, but maybe "unpredictability" captures it better. I am still adjusting to this new normal of not knowing from day to day whether I will feel ok or have some disease related or medication related spike in symptoms that will step in to change my plans and remind me that this thing is not going to go away. Even though I have (knock on wood) "limited" disease to date, the day to day changes and the month to month worries about lab results keep me constantly off balance.
Registered User
vunerability
life threatening
life changing
kidney disease
lung capacity
IgG
IgM
kidney biopsy
no cause
no cure
support forum
vasculitis
My first thoughts after reading everyone's comments. We have also been tremendously blessed by incredible doctors and researchers who have found ways to help us live longer and thrive!
KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell
Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.
Registered Member
phlebotomist ? user, junkie, lover, addict
Knowledge is power! Wisdom is using it to make good decisions!
Registered Member
waiting
watching
side effects
roid rage
good days
bad days
Some of these are two words but I guess I'm going for key phrases here
Diagnosed October 2012
Banned
How about acronyms and Latin?
RPGN (Rapidly Progression Glomerulonephritis)
Wegeners Granulomatosis
Edema
GERD
Necrosis
Proteinuria
Hematuria
Polyangiitis
Lung nodules
Ground-glass Opacities
Subglottic Stenosis
Cellcept
Plasma Exchange
IV Immunoglobulins
Epogen
Registered Member
I could create an extremely long list, but I'll keep it very short. I'll keep it to the symptoms that have had the largest adverse effect on my life -
Weakness
Fatigue
Diagnosed April 1995
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