Thanx

[Guest guest]

Your Very Welcome!!!!!!!

[Guest guest]

Diane - that's so nice of you - to wish everyone a happy Memorial day - I'd like to second that notion and add - be careful on the roads this weekend! My your pain be slight; your happiness be bright and your joy be multiplied ....you are a terrific group of people...Enjoy the moment! peace and light, Jennie in Tx

[Guest guest]

Diane,

Sorry to be late chiming in...I know you are stressed out with the

upcoming surgery... I know we have talked off line, but just in case

it makes you feel better...and even though I am early in the healing...

I do not for one second regret the decision to have the revision. For

me the recovery so far has been a little easier than anticipated and

the pain relief has been complete.

The 24-48 hours after surgery(ies) you will definitly think you made a

mistake....you will feel awful...but hopefully you will see

improvement in all regards as the days and weeks go by.

I am back to work and expect I will be able to work a full schedule by

4 months post op. I can swim in the pool for a hour at a time and I am

just now going to put on my sneaks and go hike the fields on a lovely

summerlike afternoon. I just hope it lasts.

Considering a month before the surgery I had a conversation with

myself and determined that I would not choose to live the whole of my

natural life in the amount of pain I was in...well....if you are ready

for this surgery, you know the feeling that it is worth it to " roll

the dice " .

Your doctor in the finest in the world...if he isn't going to get you

into the best possible shape, it can't be done. If you are ready to

put your faith in him and do as he says you have an excellent chance

for good results. Stay positive, stay focused and BELIEVE!

Wishing you the best, Cam

[Guest guest]

Hi Diane - Living with and in pain is absolutely one of the most unfair things that happens to us as human beings. That said, we all have something we have to live with; in spite of, despite of, anyway....that is what amazes me about women like , you and the other Fiesties - we go on w/our lives and live them ANYWAY...as dad used to say, Do the best we can w/what we have...the only time I realize that my situation in life is different from others is when I talk w/someone who isn'tt living the same or similar reality about my chronic pain. For example, yesterday I was having lunch w/a friend who doesn't have scoli and it's accompanying conditions that followed surgical "correction" and as I was talking about what is every day for me (the pain, the meds, the dis-ability), I noticed the look on her face - and it was obvious she didn't know what to say....and I realized why I don't talk that often about chronic pain, pain management, fusion, meds, etc. to others - because I don't want someone to feel sorry for me - I just accept it's part of what defines my life and I live anyway....given that I'm doing all I can to manage the situation I am in...

And all that to say that's why I'm so thankful for all of you! I wouldn't wish this miserable pain or condition on anyone, but just knowing I'm not alone is comforting. And the most important thing we can do for each other in this forum is be there for each other if only in print because scoliosis and it's accompanying conditions is a rare, misunderstood, lonely disease. Before the internet, I only knew one other person who had scoli and I didn't realize we had the same thing until after my first surgery at age 47. This resource is such a Gift!

Wishing Peace and pain-free moments for everyone...Jennie B.

[Guest guest]

> Diane - that's so nice of you - to wish everyone a happy Memorial

day - I'd

> like to second that notion and add - be careful on the roads this

weekend! My

> your pain be slight; your happiness be bright and your joy be

multiplied

> ....you are a terrific group of people...Enjoy the moment! peace

and light,

> Jennie in Tx

Thanx Jennie, I know for us that are still in the grip of FlatBack

having a fun weekend is not very easy to do, but I hope everyone

tries to make the best of it that they can. Jennie, that was a

wonderful thing you did by flying out to stay with , the

world needs more people like you.

Best Regards,

Diane

[Guest guest]

Hey Jennie, You have just described the same issues I am facing

today. If one more person tells me that they know how I feel I think

I'll scream.

I know other people have pain and I would never want to make light of

that but from what they say, thiers mostly comes and goes. Sometimes

it's hard to explain the pain to others. Yesterday I had been playing

with my nephew when I told my sister I need to sit down. Of course,

her first question was " is it your back " ? When I told her it was my

leg, I felt like I had to explain how my leg could hurt when my back

is the problem.

It's hard for people to understand the physical pain as well as the

emotional pains. My sister has just started doing her own research on

flatback to understand which I greatly appreciate. My parents, on the

other hand feels like they are to blame for all of the problems since

they made all the decisions originally. It's just easier not to try

to explain it to most of my friends. When I do, I either get the deer

in the headlights look, or the story about a friend of a friend that

saw so and so doctor and now they're all better.

For my boss, I cut and pasted some key points from articles on

flatback so he could understand why I will be out so long when I have

surgery. Maybe I should do the same for my friends and family.

Thanks for listening again -

> Hi Diane - Living with and in pain is absolutely one of the most

unfair

> things that happens to us as human beings. That said, we all have

something we

> have to live with; in spite of, despite of, anyway....that is what

amazes me

> about women like , you and the other Fiesties - we go on

w/our lives

> and live them ANYWAY...as dad used to say, Do the best we can

w/what we

> have...the only time I realize that my situation in life is

different from others

> is when I talk w/someone who isn'tt living the same or similar

reality about

> my chronic pain. For example, yesterday I was having lunch w/a

friend who

> doesn't have scoli and it's accompanying conditions that followed

surgical

> " correction " and as I was talking about what is every day for me

(the pain, the

> meds, the dis-ability), I noticed the look on her face - and it was

obvious she

> didn't know what to say....and I realized why I don't talk that

often about

> chronic pain, pain management, fusion, meds, etc. to others -

because I don't

> want someone to feel sorry for me - I just accept it's part of what

defines my

> life and I live anyway....given that I'm doing all I can to manage

the

> situation I am in...

>

> And all that to say that's why I'm so thankful for all of you! I

wouldn't

> wish this miserable pain or condition on anyone, but just knowing

I'm not alone

> is comforting. And the most important thing we can do for each

other in this

> forum is be there for each other if only in print because scoliosis

and it's

> accompanying conditions is a rare, misunderstood, lonely disease.

Before the

> internet, I only knew one other person who had scoli and I didn't

realize we

> had the same thing until after my first surgery at age 47. This

resource is

> such a Gift!

>

> Wishing Peace and pain-free moments for everyone...Jennie B.

[Guest guest]

Dear ,

What you said in your post is something I think all of us can relate to. I was symptomatic for many years before I even had a name for what was wrong with me, and the pain I felt poo-pooed off by most all around me.My family, my parents and brother and sister, just felt that I was healed like the doctor told them all the years ago when I had my harrington rod installed, and they never really listened to what I was going through. I got a lot of " with your back how can you expect not to have a bad day or two". Because my progression of symptoms was gradual, and my skills of compensation were good, many just didn't get it. For many it wasn't till I had surgery and was upright that they got the visual of the whole thing. People can't see pain, and I've endured the countless stories of my cousin had this level fused, or this disc problem. I' m a big advocate of showing people around me my x-rays, not to get them to feel sorry for me, but to get them to understand the entire picture of why I'm the way I am. I've felt it's my job to help educate people about just how draining pain can be, and just not mine, but those around us. We can't see the pain of those with Lupus, or diabetes, or heart disease. That everyone with pain deserves compassion, and a helping hand. I feel I'm lucky that I have something that I can show people just why I was in all that pain, and then I imagine those who go through pain daily without the benefit of having an X-ray, or a scar to show.

One day after my last revision I was parking my car in a handicapped parking place, got out and was headed towards the store. I heard a women loudly comment on how they give out those handicapped parking permits to just anyone, look at her she's perfectly healthy. I whipped of my sweater and exposed my TLSO brace and asked her if she'd like to wear this, and if she would like to only have her neck mobile. I told her to think before she spoke, that many disabilities can't be seen, and that those people were entitled to have that little bit of help that a parking pass gives them. She was shocked and apologised, and later in the store two people thanked me for giving her what for.

I think that you are doing just what you should by educating the people around you to your circumstances. You are giving them a gift of knowledge, not only about yourself, but about others. If you personally know someone who struggles with pain you'll be more compassionate towards the next person you meet with pain. They'll be more understanding people for you sharing, and while there will always be a jerk or two, most around me have benefitted by my sharing my story and have told me so.

Colorado Springs

Re: Thanx

Hey Jennie, You have just described the same issues I am facing today. If one more person tells me that they know how I feel I think I'll scream. I know other people have pain and I would never want to make light of that but from what they say, thiers mostly comes and goes. Sometimes it's hard to explain the pain to others. Yesterday I had been playing with my nephew when I told my sister I need to sit down. Of course, her first question was "is it your back"? When I told her it was my leg, I felt like I had to explain how my leg could hurt when my back is the problem. It's hard for people to understand the physical pain as well as the emotional pains. My sister has just started doing her own research on flatback to understand which I greatly appreciate. My parents, on the other hand feels like they are to blame for all of the problems since they made all the decisions originally. It's just easier not to try to explain it to most of my friends. When I do, I either get the deer in the headlights look, or the story about a friend of a friend that saw so and so doctor and now they're all better. For my boss, I cut and pasted some key points from articles on flatback so he could understand why I will be out so long when I have surgery. Maybe I should do the same for my friends and family. Thanks for listening again - > Hi Diane - Living with and in pain is absolutely one of the most unfair > things that happens to us as human beings. That said, we all have something we > have to live with; in spite of, despite of, anyway....that is what amazes me > about women like , you and the other Fiesties - we go on w/our lives > and live them ANYWAY...as dad used to say, Do the best we can w/what we > have...the only time I realize that my situation in life is different from others > is when I talk w/someone who isn'tt living the same or similar reality about > my chronic pain. For example, yesterday I was having lunch w/a friend who > doesn't have scoli and it's accompanying conditions that followed surgical > "correction" and as I was talking about what is every day for me (the pain, the > meds, the dis-ability), I noticed the look on her face - and it was obvious she > didn't know what to say....and I realized why I don't talk that often about > chronic pain, pain management, fusion, meds, etc. to others - because I don't > want someone to feel sorry for me - I just accept it's part of what defines my > life and I live anyway....given that I'm doing all I can to manage the > situation I am in...> > And all that to say that's why I'm so thankful for all of you! I wouldn't > wish this miserable pain or condition on anyone, but just knowing I'm not alone > is comforting. And the most important thing we can do for each other in this > forum is be there for each other if only in print because scoliosis and it's > accompanying conditions is a rare, misunderstood, lonely disease. Before the > internet, I only knew one other person who had scoli and I didn't realize we > had the same thing until after my first surgery at age 47. This resource is > such a Gift! > > Wishing Peace and pain-free moments for everyone...Jennie B.Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

[Guest guest]

, you wrote, in part:

It's just easier not to try

> to explain it to most of my friends. When I do, I either get the

deer

> in the headlights look, or the story about a friend of a friend that

> saw so and so doctor and now they're all better.

When I was in the earliest stages of recovery from some 17 hours of

revision surgery, a well-intentioned neighbor heard from someone that

I might need help and came over to visit me. I had never met this

person before. No sooner had she heard the " long version " of my

scoliosis odyssey than she told me enthusiastically that I must read

the books of Sarno, MD, which explain how back pain is all in

your head. My son was present and greeted the suggestion with outrage -

- I was too feeble to say much of anything at the time. I believe this

same helpful neighbor may also have suggested a chiropractic cure, as

have countless others. I don't know if such folks need an audiology

workup or an ignorance workup or what.

[Guest guest]

Bravo, . Well said.

> > Hi Diane - Living with and in pain is absolutely one of the

most

> unfair

> > things that happens to us as human beings. That said, we all

have

> something we

> > have to live with; in spite of, despite of, anyway....that is

what

> amazes me

> > about women like , you and the other Fiesties - we go

on

> w/our lives

> > and live them ANYWAY...as dad used to say, Do the best we can

> w/what we

> > have...the only time I realize that my situation in life is

> different from others

> > is when I talk w/someone who isn'tt living the same or similar

> reality about

> > my chronic pain. For example, yesterday I was having lunch w/a

> friend who

> > doesn't have scoli and it's accompanying conditions that

followed

> surgical

> > " correction " and as I was talking about what is every day for

me

> (the pain, the

> > meds, the dis-ability), I noticed the look on her face - and

it was

> obvious she

> > didn't know what to say....and I realized why I don't talk

that

> often about

> > chronic pain, pain management, fusion, meds, etc. to others -

> because I don't

> > want someone to feel sorry for me - I just accept it's part of

what

> defines my

> > life and I live anyway....given that I'm doing all I can to

manage

> the

> > situation I am in...

> >

> > And all that to say that's why I'm so thankful for all of you!

I

> wouldn't

> > wish this miserable pain or condition on anyone, but just

knowing

> I'm not alone

> > is comforting. And the most important thing we can do for each

> other in this

> > forum is be there for each other if only in print because

scoliosis

> and it's

> > accompanying conditions is a rare, misunderstood, lonely

disease.

> Before the

> > internet, I only knew one other person who had scoli and I

didn't

> realize we

> > had the same thing until after my first surgery at age 47.

This

> resource is

> > such a Gift!

> >

> > Wishing Peace and pain-free moments for everyone...Jennie B.

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control

ads or endorse any advertised products.

>

>

>

> -------------------------------------------------------------------

-----------

>

[Guest guest]

Thanks , I would bet that your neighbor will never know how

lucky she is. Partly because you were unable at the time to tell her

how wrong she is and partly because she will probably never know what

the pain is like.

I'm glad you're feeling better. Your in my thoughts -

> , you wrote, in part:

>

> It's just easier not to try

> > to explain it to most of my friends. When I do, I either get the

> deer

> > in the headlights look, or the story about a friend of a friend

that

> > saw so and so doctor and now they're all better.

>

> When I was in the earliest stages of recovery from some 17 hours of

> revision surgery, a well-intentioned neighbor heard from someone

that

> I might need help and came over to visit me. I had never met this

> person before. No sooner had she heard the " long version " of my

> scoliosis odyssey than she told me enthusiastically that I must

read

> the books of Sarno, MD, which explain how back pain is all in

> your head. My son was present and greeted the suggestion with

outrage -

> - I was too feeble to say much of anything at the time. I believe

this

> same helpful neighbor may also have suggested a chiropractic cure,

as

> have countless others. I don't know if such folks need an audiology

> workup or an ignorance workup or what.

>

>

[Guest guest]

Thanx Peggy and Cam for the great tips. I was just wondering if I

was supposed to get the raised toilet seat and stuff before I went in

for surgery. That's great to know they'll have that ready for me.

And I had forgotten about a chair. I've got it on my list now. And

thanx for telling exactly what kind. I'm so glad I started chiming

in here. I need a table too. My bedroom is smaller than small (as

is the house). I'll have to get creative.

So, I can forget getting into my bottom two dresser drawers for

anything???

I was thinking of stacking my sweats and t-shirts out on top of a

table or something. I'll figure it out.

And my dad can help some. He physically can't lift a lot b/c he

needs both his knees replaced!! Since I've made the decision to have

surgery, he now has decided he might just go for it too. He has to

wait though!! Me first, me first!!!!!

Thank you thank you.

camille

[Guest guest]

Camille,

You will not be getting anything out of your low dresser drawers for

awhile. Can you clear out your closet space? Perhaps you can change

your clothes for work, or your husbands things to another closet and

then hang most of your everyday stuff where it will be right ahead of

you. I know it is hard to imagine...but when I was considering surgery

and was on the phone with a friend who is a Bridwell patient (ironic,

no?) she was explaining that she was not even allowed to lean over the

bathroom sink to spit while brushing her teeth. You might want to use

that visualization as you try to figure out where to place things! You

pretty much want things between couter top and shoulder level. As time

goes on of course you will move things lower....but for the

homecoming....think about getting things higher.

Take Care, Cam

[Guest guest]

As far as while you're in the hospital - take along some snacks, that's what I'd recommend. I wasn't crazy about the food there (AT ALL) - so take some things you can eat, in case you don't like the food. They do have jello and chicken broth and cake.

The occupational therapists will make sure you learn how to go to the bathroom, get in/out of the bed, use the tools (grabber, sock aid, etc.).

I'll post more if/when I think of something!

G

[ ] Thanx

Thanx Peggy and Cam for the great tips. I was just wondering if I was supposed to get the raised toilet seat and stuff before I went in for surgery. That's great to know they'll have that ready for me.And I had forgotten about a chair. I've got it on my list now. And thanx for telling exactly what kind. I'm so glad I started chiming in here. I need a table too. My bedroom is smaller than small (as is the house). I'll have to get creative.So, I can forget getting into my bottom two dresser drawers for anything??? I was thinking of stacking my sweats and t-shirts out on top of a table or something. I'll figure it out.And my dad can help some. He physically can't lift a lot b/c he needs both his knees replaced!! Since I've made the decision to have surgery, he now has decided he might just go for it too. He has to wait though!! Me first, me first!!!!!Thank you thank you.camille

[Guest guest]

I don't remember the food! LOL

By the way, Camille, there is only one person to the room on the orthopedic floor. My husband slept in the other bed in the room so if someone wants to stay with you they can. It will save being in the hotel. They were very kind about it. He even bullied his way into staying in ICU with me. He told them he wasn't leaving and they didn't mess with him! It was nice because he was right there when I woke up and I heard his voice was the first thing I heard. So maybe your sister-in-law or a good friend could stay with you.

Peggy

[ ] Thanx

Thanx Peggy and Cam for the great tips. I was just wondering if I was supposed to get the raised toilet seat and stuff before I went in for surgery. That's great to know they'll have that ready for me.And I had forgotten about a chair. I've got it on my list now. And thanx for telling exactly what kind. I'm so glad I started chiming in here. I need a table too. My bedroom is smaller than small (as is the house). I'll have to get creative.So, I can forget getting into my bottom two dresser drawers for anything??? I was thinking of stacking my sweats and t-shirts out on top of a table or something. I'll figure it out.And my dad can help some. He physically can't lift a lot b/c he needs both his knees replaced!! Since I've made the decision to have surgery, he now has decided he might just go for it too. He has to wait though!! Me first, me first!!!!!Thank you thank you.camille

[Guest guest]

You don't remember that food? Well, I don't remember it until after my ICU stay - and everything, including the sheets, clothes on other people, the air, water, all had a same smell that I just couldn't stand and the food had the same taste as that smell. So, I'll blame it on my meds, then

G

[ ] Thanx

Thanx Peggy and Cam for the great tips. I was just wondering if I was supposed to get the raised toilet seat and stuff before I went in for surgery. That's great to know they'll have that ready for me.And I had forgotten about a chair. I've got it on my list now. And thanx for telling exactly what kind. I'm so glad I started chiming in here. I need a table too. My bedroom is smaller than small (as is the house). I'll have to get creative.So, I can forget getting into my bottom two dresser drawers for anything??? I was thinking of stacking my sweats and t-shirts out on top of a table or something. I'll figure it out.And my dad can help some. He physically can't lift a lot b/c he needs both his knees replaced!! Since I've made the decision to have surgery, he now has decided he might just go for it too. He has to wait though!! Me first, me first!!!!!Thank you thank you.camille

[Guest guest]

I think I ate most of my food and what I didn't eat would eat. I remember enjoying the juice and Jell-O.

Peggy

[ ] Thanx

Thanx Peggy and Cam for the great tips. I was just wondering if I was supposed to get the raised toilet seat and stuff before I went in for surgery. That's great to know they'll have that ready for me.And I had forgotten about a chair. I've got it on my list now. And thanx for telling exactly what kind. I'm so glad I started chiming in here. I need a table too. My bedroom is smaller than small (as is the house). I'll have to get creative.So, I can forget getting into my bottom two dresser drawers for anything??? I was thinking of stacking my sweats and t-shirts out on top of a table or something. I'll figure it out.And my dad can help some. He physically can't lift a lot b/c he needs both his knees replaced!! Since I've made the decision to have surgery, he now has decided he might just go for it too. He has to wait though!! Me first, me first!!!!!Thank you thank you.camille