Author Topic: If one more person tells me...  (Read 11791 times)

aussie mum

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Re: If one more person tells me...
« Reply #30 on: July 23, 2011, 06:46:51 AM »
My daughter's specialist once advised that she do 10 hours of physical activity a week and also sent her to a psychiatrist.

Not many 'healthy' people do that much exercise.
Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D

Pisces24

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Re: If one more person tells me...
« Reply #31 on: July 24, 2011, 03:15:21 PM »
My all time favorite was one specialist telling me it was probably something I got from my cat. (I didn't have a cat when the "stuff" started. I just got one 3 mos prior to seeing him. ) I have a coworker who doesn't like cats who thinks my cats are disease carrying furballs while her 3 dogs are santized.

My mantra (If you wants to call it that) is a line from a song "It Ain't Easy, To Be, Me".

Patze

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Re: If one more person tells me...
« Reply #32 on: July 24, 2011, 04:10:16 PM »
Ah Pisces, you got whatever it was from your cat that you didn't have??  :o Oh my gosh, please tell me that this "doctor" actually graduated from a medical school somewhere? ::)


Patze
Our home page  http://www.sjogrensworld.org/index.html
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Everything has beauty, but not everyone sees it - Confucius

The important thing is not to stop questioning ~ Albert Einstein ~

Sero Negative Queen

hollowoakfarm

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Re: If one more person tells me...
« Reply #33 on: July 24, 2011, 04:44:09 PM »
I love threads like these.

I really hate the "You don't look sick", "But you look great"  lines.  Really. Hate. Them.  My response has become, all too often, "Yes, my life would be much easier if any of the three disorders I have made my hair fall out, or my skin rot off like leprosy, or gave some other visible sign to people."


tracyj

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Re: If one more person tells me...
« Reply #34 on: July 24, 2011, 08:46:41 PM »
I'm so glad you posted this!    I told my Dr that one of the difficulties with sjogrens is OTHER people's attitudes! 

engy

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Re: If one more person tells me...
« Reply #35 on: July 25, 2011, 04:43:27 AM »
I have nothing against fung shui or smudging!

I find it ridiculous that people thought that would cure me though!

Oh, & people told me to hang crystals in my house (which I do too) but still no cure! lol

Carie
« Last Edit: July 25, 2011, 04:48:19 AM by engy »
DX:Sjogrens w/mild Lupus overlap,Hashi,Celiac,Raynauds,Sm.Fiber Neuropathy,POTS,Fibro.,CFS,OI & other dysautonomia.
No thyroid
Fish/Shellfish Allergy

RX:Plaquenil,Synthroid,LCarnitine,CoQ10,ALA,Dribose,Tumeric/Curcumin, Milk Thistle,AdreneVive,Fish Oil,Flaxseed Oil,Magnesium,B12 shots,vit D & C

jordozmom

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Re: If one more person tells me...
« Reply #36 on: July 25, 2011, 10:47:40 AM »
I've heard all of these lines at one time or another in my life - probably the worst offender is my best friend who makes snarky remarks about me missing work and tells me to "suck it up".

But mostly what amazes me is that people just don't seem to understand that I will ALWAYS have this disease. Just because I make it into work most days with make up on and hair done and functioning does not mean that I feel well.  Those are the days that I could suck it up and work past the pain and the fatigue and the brain fog and get through the day.  Then when I have a flare they seem so surprised - they say, "I wonder what happened, you've been healthy and looked great for weeks now."  No, people, I have not been healthy for weeks now, I have just faked it very, very well.  I have pushed past the pain until I couldn't anymore and it caught up with me.  It is not a cold or the flu and it will never go away.  I have this disease and its symptoms every single day, just some days they are so bad I can't overcome them with "mind over matter".  I will never, ever not be sick - I will just have different degrees of sickness from day to day.  Get it?!  GRRRRR!
SJS, Raynauds, Distal Renal Tubular Acidosis, RA, peripheral neuropathy, COPD, RLS, leaky heart valve (caused by SJS), Lichen Sclerosis.
Plaquenil, Salagen, Sodium Bicarb, Klor-Con, Ambien, Methotrexate, COQ-10, VitD, Multivitamin, Omega 3, B12

sunnybunny

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Re: If one more person tells me...
« Reply #37 on: July 25, 2011, 11:23:25 AM »
well, that is another issue we face....people saying to us 'you're still sick?'

like this wears off like an infection or the flu.
I mean, for @#!%!*! sake- I do take the time to explain fully,in detail
what this is, and you say this stuff? really?  >:( >:( >:(
that's one of them I think I hate the most.
.(..rant complete.you may now procede)  ;D :)
 
I do put on a brave face AND lots of make up all of the time.
The way I figure, if I have to feel like crap, i'm going to atleast look good.
Sometimes too, altough I feel bad, i'd like for people not to notice so I can
 go about the day and be treated like everyone else-
not have to hear about 'is this ok?'  'do you feel up to doing this or that'
or 'are you tiring out yet?  is the pain getting worse? should we go home?'.

some people sometimes though just expect that I can do something,
 because well, cant you just make yourself do it even if its painful or if your tired?

the words PAIN and TIRED hold completely different definitions for us.

Liz D.

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Re: If one more person tells me...
« Reply #38 on: July 25, 2011, 12:15:58 PM »
At my congregation meeting yesterday, I had two dear friends tell me separately that I looked bad and that I better get home and get some rest.

Believe it or not, it meant the world to me that they noticed!!!  I was feeling lousy yesterday and to me, it showed that they cared.   They told me they loved me and sent me home!  I went home and rested!!

Liz D.
57 year old female
Sjogrens Syndrome (diagnosed 2004), Hypothryoidism, Asthma, Osteoporosis
Meds:  Plaquenil 200 mg; Levoxyl 100mcg; Evoxac, Flovent, Flonase, Protonix 40 mg.,  Prozac 40 mg. Naproxen 500 mg., Hormone Replacement Therapy, vitamins, calcium, flaxseed, biotin

sunnybunny

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Re: If one more person tells me...
« Reply #39 on: July 27, 2011, 03:32:31 AM »
yes Liz, on the other hand there is comfort in that behavior as well. :-*

 I know it means the world to me when i get that treatment from my husband, or from my mom or sister. :)

To validate that we do need it often,and to be given permission almost is quite sweet. :D

Meld256

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Re: If one more person tells me...
« Reply #40 on: July 28, 2011, 12:42:28 AM »
sunnybunny,

You gave one of the funniest rants I think I've seen.  :D Put a smile on my dry face! 

But, of course, I know exactly what you mean.  "Oh, you're still sick?"  Thank goodness I've only heard that once or twice.  I want to ask them to look up the meaning of "Chronic Illness".  It's not going away today or tomorrow or next year, ok?  And, oh yeah, thank you for reminding me of that very small tidbit of info.   >:( Arggh...

Ok, back to a more positive tone.  On the other hand, when we need someone to really care and give a little extra comfort to us exactly when we need it is such a beautiful thing.
Take care,
Melinda

sunnybunny

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Re: If one more person tells me...
« Reply #41 on: July 28, 2011, 01:34:41 AM »
as 'small' as my world can get sometimes, and how narrow focused I can get from the pain,
 it's even a tiny little bonus that I notice..hey, 600 people cared to read what I had to say.lol  ;)

what's more important is that i like to think i made somebody laugh, or that i helped just a little. ;D

Not that we do any of this for attention, but it's a warm fuzzy for sure. :P

All of you here truly contribute to what keeps me going. :-*

Nathan

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Re: If one more person tells me...
« Reply #42 on: July 28, 2011, 10:58:27 AM »
Play with their minds!

"How are you feeling today?"
"I'm alive."

I do the same thing. It's one part honesty, one part cynicism. No one really gets that though, because honestly most people don't really care.
"Still breathing" is my favorite.

Jellyb

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Re: If one more person tells me...
« Reply #43 on: July 28, 2011, 11:43:56 AM »
Hi all,
It is rather pitiful really when you think about it. If you told someone you had parkinsons or MS, they would know it was forever and there is no cure. But since we dont look sick and only act sick there is no empathy.

I just went in for a physical therapy appt. A few weeks ago and when they asked about my health history, I told the I had sjogrens, and the physical therapist said " oh, thats the latest thing now isnt it". I was not sure how to respond to that, so I didnt.

sunnybunny

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Re: If one more person tells me...
« Reply #44 on: July 28, 2011, 01:46:58 PM »
oh yeah, Jelly, it is the latest thing isnt it?  >:(
didnt u just want to leave? lol
I seriously have no patience for that anymore, I probably would have laid into that person.
I dont recall ever wanting to run out and 'claim' a disease because of its popularity.
grrrrrrrrr ::)