If one more person tells me...

[Carolina]

Funny to read, not so funny to be on the receiving end.

i say as little as possible now.   Except do complain to husband.  I'm in a bad flare now and not taking my  magic pain med cause of ulcers starting again.

Nathan has the right idea, tho' for going public when you're still in career and social mode.  Why do it?

People do NOT understand, so it just muddles the whole environment.

Flu, yep everyone gets that.

However my stumbling and falling and staggering and total inability to access some places really can't be the flu, can it?

Well, lucky I'm retired.   How everyone else does it who works is beyond me.

You are the true HEROES.

Hugs

Elaine

[Patty]

Maybe when they say I look good, they mean I am not totally bald and still upright. I guess that's something anyway.

[Rhonda]

I can relate to everyone's comments!  Like all of you, I have heard them all too.... but my favorite is when my Internist told me I should take up belly dancing - yes---- you read that right -  belly dancing!  She said it is a good excercise that would use up all my nervous energy and in turn give me good, positive energy.

I was like - uh, are you serious?   If I had the energy to belly dance, I wouldn't be complaining about how tired I am all the time!!!  LOL!!!! 

And... no, I did NOT take up belly dancing!  Between the fatigue, muscle aches, and joint pains I didn't think I could handle it!  lol

Sheesh!  Sometimes I want to scream at people, but like most of you, I just don't say anything.  I get tired of being told how to handle my illness by people who have never even heard of it before.  grrrrr

[buddybelle]

We can all laugh about it now.

BUT there are those times when all we need is a smile, hug, or just a statement acknowledging the trials we face.

Some people just don't get it and never will.

[ktfabian]

My all time favorite was just before my second or third back surgery. I was in the hospital because my bladder had shut down, and my sister told me that, "maybe if I exercised more I wouldn't need surgery". Uh, sure, I'll hop right out of bed with my catheter bag and drop down and do pushups!

I've been diagnosed with Sjogren's for 10 years and have had a total of 12 surgeries on or for my back, but there are still those, especially in my family (parent, sisters, etc) who think I'm "overreacting, it's all in my head, I need to lose weight, etc and so forth."

My sister with the exercise suggestion and I don't see much of each other anymore. She's a super healthy, super mom with a full time plus career and two almost teen children and she just doesn't seem to want to have anything to do with a sister who isn't up to snuff.

In my opinion, she should get down on her knees and thank me for taking all the various health issues that were supposed to be spread out over all four girls in the family! (I'm kidding, of course).

My oldest sister didn't seem to buy into all the things that I had going on (which was always my Mom's stance til she burned out too many brain cells with alcohol) until we started spending time together about a year ago. Her husband had Alzheimer's and she was having trouble finding a nursing home for him, I offered to help. We've spent a lot of time together since then (she lost her husband last Nov.) and she's my biggest supporter. She even offered to try raising funds to pay for my rituxan infusions when my health insurance threatened to cut them last year. Fortunately, they were reinstated and I actually have one family member who doesn't think I'm nuts!

Hang in there! and thanks for starting such a good thread!
Tracy

[sass]

AIN'T IT THE TRUTH!!!!!!!!!!!!!!! 

oh, just loose some weight!!

sass

[donnadyer]

How about...."you're just gonna have to get used to hurting...you're getting older"?  (btw, that's from my husband and im 37!)

[Meld256]

I've heard a lot of these, but I think yours, StephL, is one of the best.  Your doc told you that you "lacked direction"...unbelievable.

My former PC doc (the one I "fired" like the Donald) apparently didn't have a clue about brain fog. I was trying to explain to him that I was having serious memory/concentration problems. 

For an example, I told him, I went into the grocery for 3 items and couldn't remember 2 of them by the time I got inside.  My husband and I just talked outside about what we needed.
He said that's not a problem...a problem is not if you forgot where you put your keys when you walked out of the store, a problem would be if you looked at your keys and didn't know what they were used for!  I said, I understand.  I'm not talking about dementia; I'm telling you my memory is not anywhere what it used to be.  He then told me this happens as we age.  ARRR!!  I didn't age that fast over a 3-month time period.  Just no clue! 

[Liz D.]

I have to say I am guilty myself of blaming a lot of my aches and pains on 'old age' and I am only 47.  Both my parents were ill at a young age (Dad with Parkinson's Disease at 43 and Mom with Congestive Heart Failure and surgeries from the age of 22) so I feel like I have always been surrounded by sickness and people not feeling well.

I often wonder if that is why I don't push myself more than I do and it is just a 'way of life' for me not to feel well because my parents never felt well.  (That being said, I do realize I am not on a million different prescriptions for SJS for no reason!!)

Liz D.

[irish]

Good one Joe!!!!

Nathan, Good answer! I didn't believe in telling too much to my employer cause they can hold it over your head---and head you out the door!!

The belly dancing is a hoot. Ya gotta give these docs credit for coming up with all these things that they think will "give our life more direction". HaHa.

The one that I heard too many times was that I needed to see a psychiatrist---told this one time when I was complaining of horrible back pain between my shoulder blades after eating pork. I figured it was gallbladder as I literally rolled back and forth for about 2 hours and then it quit. Nope, I was told I needed a psychiatrist.

Another time the test that determines myasthenia gravis was high plus I had positive thyroid tests for hashimotos, ( I wasn't told this and found out only by getting my records) Anyway, the reason for these 2 high tests was because I had gray hair at an early age. I could not believe that one. And yes, thank you, I did get diagnosed a few years later with myasthenia no thanks to those earlier doc!!!

Ya just have to take a deep breath and back and up and punt as they say. Life is too short to fuss and fume forever over this stuff. They can't help it cause people do not want to face up to the fact that they, too, may become sick some day. Irish

[engy]

You need to go to bed earlier ( thanks mom)

You should Fung Shui your house (?)

Hope your daughter doesnt inherit your health issues (oh really cuz I never thought of that nightmare... a million times!)

Ya I'm tired too (are you thinking what I'm thinking?)

Carie

[dante]

 I to have heard all of these. They just make my skin crawl everytime I hear one of them. I have a coworker who tells me to " use my energy working on things, such as work, then I can keep from thinking of it. "Being around people will keep your mind from thinking about it"
 I have grown up with a mother who has always been sick. She has had 27 surgeries in her lifetime and MANY problems with her health. She had someone tell her that they thought she had a crush on her doctors that's why she had all these surgeries. Can you believe someone telling you this.
 Not just these says hurt to hear. It gets to me when you do say that something is bothering you and the person comes back with "I know someone who has that" or "I have or had that too". People who try to out beat you with their story is the worst!!!!

[sunnybunny]

'one and only' those are def some great ones ...everyone esle too,thanks.
yes, it's the people trying to out-do an ailment or pain I love.

what i LOVED THE MOST recently was an out of state relative wh actually was the culprit of most of these other  comments in the past. They said I should do something creative to feel better, like designing invitations for weddings,because its not physical work and i would feel better about myself if i were 'accomplishing something'.
really?   like taking care of my daughter every day with the very last ounce of strength i have isnt?
like doing anything at all isnt?   like not clocking you right now isnt?
(and by the way, when i ordered my wedding invitations 6 years ago they were done online and were extremely expensive LOOKING and only cost me $1.45 ea.and a computer did them not a person. so again...really?)

yes, i spend most of the time putting on the brave face because some people just dont want to hear it all the time.
some stop asking "how are you feeling today" because I felt like i was betraying myself lying and saying 'oh good'.

and yeah, sorry, even though its been a loooong time i've had this, it's been the last few years i really
started to look like crap.  prior to that...people tell me i looked pretty darn hot.lol

I really can say for sure now thanks to all those smart people  it must be because i'm lazy and just over react that i stopped working and have lost nearly everything waiting for ss disability.
Nope, God's not punishing me either...he's the only reason(and my daughter) I havent rolled over and died yet.

love to all of you here.

[Joe S.]

Play with their minds!

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

Most people will ignore the answer because they are just trying to be nice. This response does not fit the typical script. My wife translates this to mean that I have a lot of pain. Very seldom do people dig deeper. Most really do not want to know. They are just trying to have a conversation with traditional scripting so they do not have to think.

When my mind is not in the fog, I try to use phrasings that make myself and others think. To often our conversations are repeats of the same old scripts.

[LizPetillo]

You should Fung Shui your house (?)

Been there .. done that.  Also we smudge.  Didn't help the health any.  It does keep the spooks quiet for a while (we live in a haunted house).  But the Fung Shui and the smudging didn't help my health.