Changing Expectations

[Guest guest]

So we have been bashing and touting our family and friends for awhile. I have

been pondering how to change people's expectations. I have family members who

are loving and supporting and yet just do not get it. They keep expecting me to

be " fixed " and go back to life as before. That would be nice, eh? With time

they are beginning to come to terms with the new me, just as I am beginning to

come to terms with the new me. We have open dialogues, I provide education on

my yet-to-be-diagnosis and I share with them stories from sites like:

ButYouDontLookSick.com.

So what have you been doing to change expectations of those around you? What

have you found to be helpful and what's not worked so well?

[Guest guest]

wrote:

> So what have you been doing to change expectations of those around you? What

have you found to be helpful and what's not worked so well?

,

My Sisters and I are all from the Medical field so we are all telling each other

what procedures to do and not to do but my 92 Dad was the hardest as I am the

" baby " girl and always the strongest and had to retire with 26 years from the

military (cannot wait until 60 so I can draw my pay).

He read a lot so I brought him a simple print out with pictures, about.com is a

great site for this, just type in the subject and it come up. I also brought my

CD and laptop, and he could see my MRI with all the Instrumentation and

herniation, scarring, misalignment, I have from the degenerative disc disease

and Sacral Iliac Syndrome.

He has leg cramps so he understands those. My husband can feel the hard rock

areas that form from spasm. The glycogen will form when your muscle stay in

spasm so long and they feel like hardened rock spurs. Bob thought it was my

bone. My physical therapist did myofascial release on them so he could see the

areas break up and become soften.

Also when I had the Botox injection, it was the same thing, you could feel the

difference.

My Doctor spoke to my husband and that was the first time I saw him cry as he

said " Her prognosis is not good " and what was bad as this doctor did not use

the proper protocol to test me with a disco-gram after six months and three

injections or he would have found the three discs gone and bone on bone rubbing.

He just kept doing epidurals. He knew he had made poor decisions and wrote a

letter quickly to my Doctor about how he tried to support my care when I told

him and had a second and third opinion scheduled when he tried to schedule yet

another epidural.

He also caused aracnoidities in my back and the scarring is so obvious and that

is what is being treated now because it is causing impingement and I do not want

more surgery.

I am sorry I digress, but I use research, articles, and others we know to

explain what I have. It is hard for family to accept a family member has a

disability and I saw this when I worked with Cancer patients. The Cancer

patients were doing okay but the family could not accept it and had to go

through the grieving and family has lost some of what we have been.

Unfortunately, my older psychiatric nurse Sister who did not know the extent of

my condition told my Dad that I really was not that bad and was probably trying

to get my disability. Actually, my work sent me a letter and stated I could not

come back as I had declined so much and I even had a mini stroke at work.

She also made it bad that saying that I took too much pain medication (she takes

the same thing) so these perceptions are hard to change and when she had a back

strain I did not want to smile but she said " How do you deal with this every

day? "

I also say I am following my Doctor's instructions when I stay on bed rest and

miss family outings. Hope that helps a little how I try to deal with the

different members of my family. Bennie

[Guest guest]

So what have you been doing to change expectations of those around you? 

What have you found to be helpful and what's not worked so well?

Hi

They are never going to understand. Just don't talk about it anymore. You

are wasting your breath.

I am sorry to be so blunt, but you cannot argue with ignorance, nor

teach someone who doesn't want to learn.

If anyone asks if you are fixed yet, just say no and I never will be. One

phrase I like to use is " I'm in pretty good shape for the shape I'm in " then

I smile and change the subject.

Change the subject to something about them. Most people like to talk

about themselves, so kindly encourage them.

If they also yet another cure, just say thank you, and once again

change the topic. Once you practice changing the subject it becomes

easy.

Find something, anything interesting to talk about. Try to keep up on

current events, and so forth.  Keep control of the conversation,

especially on the telephone.

My husband and I both have chronic pain, so we use a few catch phrases. 

" It's not too bad, it's a rough day, or the day from Hell. "

We each chant " screaming or crying won't help right? " and several others.

I had my knee replacements done 9 years ago, and woke up

with more pain from the neuropathy damage in my upper legs

than in the new knee areas.

I spent the first year in the bedroom with the door closed, in

a rage. You get the picture.

Then I woke up one morning and decided that I did not like who

I had become. So I found this group and began to pick

up the pieces.

This group, and finally the right doctor have saved my life.

I saw a very good counselor too.

I am blessed to have a kind husband. We had multiple

counseling sessions together.  It was very helpful.

My two adult children are kind,

but I rarely see them. We talk on the phone.

Sorry, this has become a novelette.

PS One of our dogs has arthritis pain. We give her Rimadyl,

and keep up with the appropriate blood work it requires.

[Guest guest]

> wrote:

> So what have you been doing to change expectations of those around

you? What have you found to be helpful and what's not worked so well?

Aloha !

Kaylene has probably hit the proverbial nail on the head for most of the

chronic pain people in the world. I was completely taken by surprise by

the realization that most friends and family simply don't " get it " . It

isn't that they don't want to, most of them " seem " like they do, but for

some odd reason, they don't. And it sucks big time when one thinks that

these are the people that we should be able to " count on " when our chips

are down. Of all the things in dealing with chronic pain and the massive

amounts of extra crap that goes with it, THIS is almost the one thing I

had the hardest time dealing with.

I've been dealing with this condition now for almost 14 years (it will

be come March 2011) and I've gotten to the point where the ONLY thing I

do now is what Kaylene does; I don't bring it up anymore unless someone

else does. The one thing I'll never understand is why do the people in

our life that know and are able to understand our condition still so

stupid that when they see us, they always say, " Oh hi, " How are you? "

????????

The nurse at the doctor who takes my vitals before an appointment

always says this, and so does the cashiers at the local stores and folks like

that!

With the nurse, I have the best time with because I always come back with, " Oh

fine. Never better. That's why I'm seeing the doctor

again for the gazzillionth (insert number) time! "

The one thing I've noticed about giving a kind of " smart alecky " remark in

return such as that is they never seem to get upset about it. I think it is

because they suddenly realize that I've been saying the very same thing in

return to them for years and years that the embarrassment of it all overshadows

any " hurt " they may feel from my remark. What's funny though is that no one has

been able to give me a good answer for why they always ask me that upon seeing

me....ignorance? Maybe.

Kaylene is right on with the medication thing that she mentioned and how her

sister who is taking the very same thing and amount complains that she takes too

much and that she is only " acting " in order to collect disability.

I know Kaylene apologized for her " novelette " , however, if I started talking

about what I think of those that " think " that way about

me, I'd go on until this was a real novel.

So to cut to the " chase " ; I'll just say that the ONLY thing that really matters

is what you, your doctors, and anyone else you need

to deal with in your life due to this " so-called " life of chronic pain, think.

What the next door neighbor and their friends think don't make any difference at

all. Nor does any " Joe Blow " out there. We all have enough to deal with without

adding that crap to our plates.

And for what it's worth, for those that continue to harass and try

to defame our character simply because of their ignorance, vindictiveness,

stupidity and preconceived ideas of what " things " should be in our lives, they

can simply keep enjoying their miserable little lives of nothingness and keep

stirring their " pots of discord " , if that is all they can see, can you imagine

what the rest of their lives must be like? I don't think most of them are very

happy

people at all and may even be a bit jealous about some aspects of our

lives that we simply can't see due to all the crud we have to deal with.

So be happy with who you are and what you have accomplished so far in

this type of life. It took me many, many years to finally come around

and see just how lucky I was to be alive and to exist again. It was a

lot of " hell " to go through just to get where I'm at now and you know

what?

None of us owe anybody any kind of explanation who can't

appreciate what we have gone through and are still going through. I only welcome

those that make my life better now and try not to deal with those that try to

bring me back down again. Sometimes we all have to deal with some of those

folks. If I do, I only deal with the very minimal amount of interaction.

They haven't a clue. Simply put.

I don't know how long you have been dealing with your condition, but if you are

dealing with it for as long as I have and WILL have to,

eventually, you'll see what I mean and ones life tends to mold itself

around those that are good people. Plus, our lives suddenly repel those that

want to bring us down. It is a great " survival instinct " that we have inside us!

I love it.

If you want me to, I'll be more than happy to elaborate on my little

philosophy. Heaven knows I love to try and teach those in a similar type of

" life " as mine new coping skills. Seriously!

Stay as pain free or as low on that infamous pain scale we all use as

possible.

Aloha Just For Now,

Wayne