Well meaning advice

[Guest guest]

Is anyone out there tired of people telling you to just start moving

around and deal with your injury because it could always be worse.

Or, your only in pain because of the rain, cold, blah, blah,blah. I am

sick to my stomach with people advising me when they don't know what I

am going through and I didn't ask for their advice anyway. The more I

use my arms to do things or carry, they go numb and my pain gets

worse. Even my doctor told me " I can't tell you that becoming more

active won't make you worse " . I just screen my calls and don't answer

the phone if I am not in the mood for uneducated " well meaning advice " .

Phyllis

[Guest guest]

>Is anyone out there tired of people telling you to just start moving around and

deal with your injury because it could always be

worse

Phyllis

Yes, I am so sick of that.

My pain clinic doctor kept telling me Tuesday if the pain had gone away in my

neck, and I guess I couldn't give him a straight answer since I also have

arthritis in my neck from X-rays that the doctor took earlier or someone did and

it was my shoulder that was bothering me, badly but only After he pushed on it

and made it worse.

The right shoulder freezes up on me so I ended up getting not just 2 shots but a

whole bunch of trigger point injections. As long as I don't over do it on the

computer I am fine, though sometimes I

really do think it depends on how I sleep.

And now I think he made my migraines worse. I haven't been able to function

since. My head is so killing me, yesterday it was over 110% pain, I just wanted

to die and today it isn't much better.

I took my zomig and now twice(once this morning and now just when I got home, if

this continues I will end up in the ER tomorrow, I don't like this running too

long on me, have had a headache/migraine for like 7 days and that wasn't fun)

and the emergency room can't do much more for me other than give me enough pain

meds or ativan or anything to knock me out.

Sorry for the ramble.

Granada

[Guest guest]

I am on 40 mg of Celax and 200 mg of Topamax at bedtime

From: Gaynor

That's interesting to me. I also have depression and ptsd and have never

been denied a muscle relaxer when I need one, just because of my psychiatric

medications. What medications are you on that won't allow a muscle relaxer?

[Guest guest]

I agree. I am constantly being told so many different things.. Such as...

1) " Just deal with it " and it will go away "

2) " You are too young to have health problems. "

3) " It's all in your head. "

4) Also that I am being " lazy " and " making it up "

I am also being treated not only by my own doctors, but by complete strangers...

My own doctor said. at first, that I was making up all of my health issues.

Then, my doctor also said that I am making up all my recent trips, slips, falls,

and now abdominal pain. Since we moved here to South Dakota, I have been to the

ER several times for severe pain, strained ankle, strained knee, abdominal pain,

etc.

And now that my Laproscopic surgery showed my abdomen is in perfect health,

minus my full intestines and colon. I even have pictures of my insides.. The

healthiness of my liver and other organs shocked me since I have been on so many

medications for so long. But, I do drink more water than a river flows

sometimes. ha ha.

Anyway, It seems as though I am fighting the world. Although I say that I don't

care what others think, deep down, it hurts so much to be told I am lying or

faking something when I am not. Sure, there are people out there that do lie

and fake things to try to get something, I sure as heck am not one of them. I

would LOVE to be able to walk my dog again, to be able to work again, to not be

in chronic pain again, to not have to take so many medications anymore, and so

much more.

When people give " well meaning advice " , almost all of the time, they do not

understand what we are going through, nor possibly even imagine it. The closest

thing to understanding for " outsiders " comes from us attempting to explain. And

that usually doesn't work lol. At least it doesn't work seem to for me!

Love,

Becky

[Guest guest]

Clara wrote:

> And I love all the people who look at me when I get out of the

> accessible parking spot, with my disabled tag, and tell me that I

> don't look disabled. I tell them funny, they don't look stupid.

Good morning Clara,

I know exactly what you mean, some people really don't think before

they ask questions.

I've had the well not pleasure, but choice to tell one of the local

clergymen, that since I am totally disabled, and can not work,

how am I supposed to work for you?

he had asked me to fix his air conditioning unit in his parish.

Since I became disabled in September of 1995, I was to take the

new certificatiopn test for HVAC's retrofitting test, a United

States lisencing test that would certify me to work on all new

equipment since they were due to phase out( in November of 1995)

the cloroflorocarbon gases from use in air conditioners and

refrigeration equipment, I could not work on his stuff even if I

tried, legally,

And I do everything legally.

That still didn't shut him up. I hate to be disrespectful of a

clergyman, but I felt I had no choice there.

I agree with you, just because we may have difficulty walking at

times, they still say stupid comments, I jusy ignore those people

and get on with my life.

I too, was told my disabilty is holding me back, my answer was the

same as yours " Duh, really? " , I just had to laugh in their face,

until they too realized what a stupid question they had just asked

me sunk into their head.

I guess they were either trying to be confrontational, or they

really had nothing to say. I want to choose the latter, but

sometimes people really are dumb.

I'm going to try and catch another nap, it seems, that is

all I can do lately. take care and, well, try to cope.

/New York

[Guest guest]

--- Cheryl in AZ wrote:

>As a result, I just smile and say I'm fine when I'm

not, just to get them off my back.

One of my favorite responses is, " I'm in pretty good

shape, for the shape I'm in. " That tends to make them

scratch their heads, long enough for me to get away.

I left my favorite chatroom, many years ago, partly

because I was sick of people telling me that it " hurt

them, that I wasn't any better. "

That one never made sense to me. How did it hurt them?

Oh well, what can you do. My Daddy always said, " you

can't argue with ignorance. "

Kaylene

__________________________________________________

[Guest guest]

wrote:

> Oh, and both him and my mother feel I should sleep on a " regular schedule

every day " . That my sleep schedule and eating habits are preventing me from

getting well.

They both have made really good points. Getting on a regular sleep schedule is

essential in improving pain control. Eating well will definitely improve your

over all health.

--

Lyndi

[Guest guest]

I understand it must be hard for those of you with invisible disabilites. some

people just don't understand that you can have good and bad days so you not

always going to look very disabled, and heaven forbid you need to park closer if

you don't wear braces or use a wheelchair.

Believe it or not there have been many times my helper has pulled into a

disabled parking spot with me and we have gotten dirty looks from older people

parked in those spots too. there have even been times they have waved their

disabled cards and pointed.

That is until my helper gets out and pulls my wheelchair out of the van and

lifts me out in to it. then we both wave. so I guess it takes all kinds to judge

others. visible or invisible disabilities

Have a good day

/ Tealwolf

>clara brotherton wrote:

And I love all the people who look at me when I get out of the

accessible parking spot, with my disabled tag, and tell me that I

don't look disabled.

[Guest guest]

I was told the same thing about my PTSD, by a psychatrist that was supposed to

treat it! It took all my strength not to laugh, but I looked in square in the

eye and said, " I know. I thought that was the entire point of your job. "

Some people just don't think before they speak. The people that look

at me and are all like, " maybe if you pray more, you'll get out of your

wheelchair and be able to walk. " Okay, whatever. I tell them, I pray and go to

church, but that isn't the reason I do it.

My favorite thing though is from other people I know who have spina bifida. I

get told a lot that I don't act as disabled as they do, why not? I just have to

roll my eyes at that question.

Hugs,

clara brotherton wrote:

>I once had someone tell me that my depression was all in my head.

[Guest guest]

>Kaylene wrote:

>One of my favorite responses is, " I'm in pretty good shape, for the shape I'm

in. "

What a wonderful reply, I am going to use it often. Yesterday, the pain was so

bad I could barely walk. I was in tears. I have now been put on Morphine and

hydrocodone. Of course my mother in law said the pain was from the rain!!!

[Guest guest]

Moderator's note:

Show your sister what it says here at www.quackwatch.com so she won't spend

anymore money on this nonsense.

http://tinyurl.com/brelv

Anytime, someone claims their product can heal everything from A-Z, it's a lie.

Kaylene

My sister called to tell me that my niece wants to come and visit me

because she bought me that some stupid Tahitian Noni Juice for $28.00

that I didn't ask her for. Just her contribution to the cause I

guess.

I don't want to drink some silly elixer. I am just going to tell her that I

have to run it by my doctor first. I can't believe that she spent all that

money on something that I never heard of and didn't ask for.

[Guest guest]

Your Dad was a smart man, I have a tee shirt that reads; " you can either agree

with me or be wrong " ( It's a Bronx saying, in New york), My Doctor's love it

too, and enjoy the joke.

Take care and try to enjoy the weekend.

/New York

Kaylene Wrote:

My Daddy always said, " you

can't argue with ignorance. "

[Guest guest]

>

>>

> Thanks a,

You are not alone, it helps me to see how many people are going

through the same problems us chronic's go through. I have been

belittled by the best of them. All I can do is take it a day at a

time. Plus I realize that there are many more people that are worse

off than me. Even though my pain is my own and I cannot discribe the

agony that I go through day to day, being a part of this group has

helped me and informed me of new treatments and medications. I just

want to thank you and everyone in " our " group to get me through

another day.

All the best,

Mark P from Connecticut