Re: Question of the Week #5

[Guest guest]

Yes, it's a cascade effect. The pain/numbness is constant now, it's just a

matter of magnitude. I'm down to one possible sleep position, and even then I

have to be exhausted to be able to fall asleep, and even then I usually wake up

several times each night. The quantity and quality of my sleep is so low that

I'm chronically sleep deprived. Therefore I eat more to try to keep myself

awake during the day, which puts on the pounds which adds to the pain and

immobility. I'm less alert than I used to be. I can't focus as well, and I

can't remember details as well. My job performance has certainly suffered. I'm

not getting the choice assignments anymore. In addition, I finally had to

switch to part-time, which hits the pocketbook in a big way. I'm clinging onto

my job and postponing my revision because of the uncertainty of the economy

right now. I'd rather squeak by with a mediocre performance on a part-time

basis and where I have job security,

than risk it all by switching jobs if I could even find a job closer to home.

The recovery from revision surgery is likely to last past the 12 weeks of FMLA

leave that I'm entitled to. After those 12 weeks are up, my job security goes

out the window. If there are layoffs after my 12 weeks of FMLA, then I know I'm

out of a job and out of health insurance too. That's a stressful situation,

albeit not as dire as other Feisty members, and that just adds to the

sleeplessness, overeating, foggy-brain, etc. I cope best when I'm distracted -

watching a movie, planning for an upcoming family event, concentrating on an

easy work assignment, playing Webkinz arcade games, doing puzzles.

> From: Rasche <elizabethrgonzalez@...>

> Subject: Question of the Week #5

>

> Date: Thursday, January 22, 2009, 12:51 PM

> To increase the cumulative treasury of knowledge we are

> building at

> this site -- and for possible inclusion in a book for

> others with

> similar spinal problems (either with attribution to you, or

> anonymously, as you wish) -- please consider replying to

> the following

> question:

>

> (5) Has your spinal condition affected your work-life or

> your

> finances? For instance, have you had to stop working, or

> have you

> found that you can no longer afford your previous standard

> of living?

> If so, how are you coping with these changes?

>

> Thanks in advance for your thoughts and advice in this

> area!

>

> Best,

>

>

>

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

>

> Support for scoliosis-surgery veterans with flatback

> syndrome caused by spinal hardware. Not medical advice.

> Group does not control ads at site.

[Guest guest]

I am 61 years old and had my scoliosis treatment by fusion 50 years

ago in the days before Harrington rods. It was a process different

than what I hear most of you describing...involving 6 months in a

complete body cast curved like a rocking chair runner against the

curve. The fusion surgery was performed by Dr. Salter at Sick

Childrens Hospital in Toronto.

My live has been good. I never suffered monetarily...or had much

pain. Had two kids by natural childbirth and generally was in great

health.

In my 40's I started into flat back syndrome and have slowed down

considerably while gaining a lot of weight. I believe that the most

damage was caused by attempting to follow ill-advised courses of

physical exercise that have worn out my hips. Sit ups and leg lifts

in particular never seemed to hit the muscle groups they did in

others. Tai Chi caused a major problem at one point. Osteoarthritis

has crept in predictably. Walking is tiring and I need a stick. But

that is the sum of it.

Compare that to what could have happened...seeing as I was well along

to needing a chair at age 11. I have blessed Dr. Salter ever since he

did the surgery. In retrospect, the only thing I wish could have

happened in my 20's and 30's is a course of follow-up care on

appropriate, useful and non-damaging physical exercise.

Marg in Whitby

[Guest guest]

Thanks for sharing...I hope the weather up there...isn't slowing you down...Best Wishes...

Re: Question of the week #5

I am 61 years old and had my scoliosis treatment by fusion 50 years ago in the days before Harrington rods. It was a process different than what I hear most of you describing...involving 6 months in a complete body cast curved like a rocking chair runner against the curve. The fusion surgery was performed by Dr. Salter at Sick Childrens Hospital in Toronto.My live has been good. I never suffered monetarily...or had much pain. Had two kids by natural childbirth and generally was in great health.In my 40's I started into flat back syndrome and have slowed down considerably while gaining a lot of weight. I believe that the most damage was caused by attempting to follow ill-advised courses of physical exercise that have worn out my hips. Sit ups and leg lifts in particular never seemed to hit the muscle groups they did in others. Tai Chi caused a major problem at one point. Osteoarthritis has crept in predictably. Walking is tiring and I need a stick. But that is the sum of it. Compare that to what could have happened...seeing as I was well along to needing a chair at age 11. I have blessed Dr. Salter ever since he did the surgery. In retrospect, the only thing I wish could have happened in my 20's and 30's is a course of follow-up care on appropriate, useful and non-damaging physical exercise.Marg in Whitby

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.12/1910 - Release Date: 1/22/2009 6:28 PM

[Guest guest]

I'm a nurse. Prior to surgery, I could work, but went home daily in tremendous pain. After surgery, my pain was improved, but due to my inflexibility, I could no longer work at the bedside, which is my love. This was my choice (perhaps prior to being directed by supervisors) because I felt I may be a hazard to my patients in an emergency. In addition, I'm on maintenance doses of Methadone. Nurses cannot work while on narcotics. Period. I currently hold an administrative position, which works for me, but I miss the patient contact. I also fear future job searches, as preemployment findings of narcotics usage, albeit prescribed, may eliminate my chances of employment. I'm not disabled enough to qualify for benefits, but my options are severely limited. I have chosen to pursue my Master's degree in hopes of advancing my administrative position, or possibly teaching nursing. Maybe I can enlighten the new nurses on pain, disability, and the psychology of our issues.

Donna Durgin

From: elizabethrgonzalez@...Date: Thu, 22 Jan 2009 17:51:31 +0000Subject: Question of the Week #5

To increase the cumulative treasury of knowledge we are building atthis site -- and for possible inclusion in a book for others withsimilar spinal problems (either with attribution to you, oranonymously, as you wish) -- please consider replying to the followingquestion:(5) Has your spinal condition affected your work-life or yourfinances? For instance, have you had to stop working, or have youfound that you can no longer afford your previous standard of living?If so, how are you coping with these changes? Thanks in advance for your thoughts and advice in this area!Best, Windows Live™: E-mail. Chat. Share. Get more ways to connect. Check it out.

[Guest guest]

Yes my spine surgeries have impacted my work life dramatically. After my revision surgery in 2003 and a follow up surgery in 2004 I was off from work until November of 2006. Finding a job in my field was not easy, so to ease the burden of useless interviews I put in my cover letter about the surgeries I had been through and what my limitations were. Most people told me that I was crazy to do that but I actually did get interviews and a lot of these people were happy that I was honest and up front with them. I landed a job in my field, Network Administration, working for the government. What luck! Government follows the ADA standards very closely and they even worked with my Voc Rehab case manager to detail the do's and dont's of a good work environment for me.

There are days where it isn't easy to get out of bed and go to work and my boss understands this, I can often times work from home at different hours, not always the 8 to 5, if I don't feel good until 3 in the afternoon I can put in my hours then, from home.

Many people I work with are aware of my surgeries and are happy to help me when I get into a situation, such as on Thursday of last week we had a fire in the building, steps are not my favorite so someone carried my cane for me while another person assisted me down the stairs as I held on to the railing. Once we were outside in the ice and snow a Sheriff's deputy arrived in his squad car and drove me to the Sheriff's department where I sat and worked until they received the all clear and he brought me back to my office.

I understand that I am in a much better situation than most people and I do count my blessings with finding a job after having these surgeries and that they are willing to work with me. Of course there are the few who could care less and have their snotty comments and are rude and obnoxious and yes that gets to me, but I am starting to learn that they are jealous of me in their own way. What I find sad about that situation is if they really truly knew how hard it is for people like us who have had these surgeries they would probably be ashamed of this 'jealousy' they feel towards us. The best resolution for people like this is to say a prayer for them because they are obviously in a lot worse shape than I am.

And one last comment, keeping a positive attitude, even on the bad days has made a huge difference for me. If I can't find something positive about myself I find positive things about others and tell them. For example, I hurt so bad I can hardly move and just want to crawl in a hole and cry, so I see a gal in the hallway with a new hair style, I tell her how beautiful she looks today. The next person I see has a red sweater on so I tell her how that color brings out her eyes. After making a few people smile I find myself smiling and feeling good enough to get through another day. Take it one day at a time and smile when you feel like crying.

From: Rasche <elizabethrgonzalez@...>Subject: Question of the Week #5 Date: Thursday, January 22, 2009, 11:51 AM

To increase the cumulative treasury of knowledge we are building atthis site -- and for possible inclusion in a book for others withsimilar spinal problems (either with attribution to you, oranonymously, as you wish) -- please consider replying to the followingquestion:(5) Has your spinal condition affected your work-life or yourfinances? For instance, have you had to stop working, or have youfound that you can no longer afford your previous standard of living?If so, how are you coping with these changes? Thanks in advance for your thoughts and advice in this area!Best,

[Guest guest]

,

What a beautiful outlook you have. And I love your positive attitude

and how you will compliment others if you don't feel good yourself.

I'm so happy that you found a job where the employer is so

accomodating! If all employers would be so willing to work with

people who have health challenges, then I wonder if there would be a

lot fewer of us on disability!

Thanks for sharing your story!

>

> From: Rasche <elizabethrgonzalez@...>

> Subject: Question of the Week #5

>

> Date: Thursday, January 22, 2009, 11:51 AM

>

>

>

>

>

>

> To increase the cumulative treasury of knowledge we are building at

> this site -- and for possible inclusion in a book for others with

> similar spinal problems (either with attribution to you, or

> anonymously, as you wish) -- please consider replying to the

following

> question:

>

> (5) Has your spinal condition affected your work-life or your

> finances? For instance, have you had to stop working, or have you

> found that you can no longer afford your previous standard of

living?

> If so, how are you coping with these changes?

>

> Thanks in advance for your thoughts and advice in this area!

>

> Best,

>

>

[Guest guest]

,

Oh yes, my operation did cause me to quit work. I was 38 years old and had fusions from T3 to L4, with rods for a 91 & 78 degree curve. They took one rib & hip bone & also donor bone for my fusion. I took off 5 months of work then went back. The only reason I could do that was because I worked with my husband so he did the driving & helping me. Other wise I could not have done that. So I worked 2 years until I had my rods taken out & then decided to try for SS disability which I got. I could not even bend over to brush my teeth for one year, flossed instead.

My scoliosis got a lot worse (age 35)after I went to the gym & did that machine where you do repetitions & I lifted quite heavy weights, stupid me, thought I was being healthy.

I often wonder how my life would have been different if I had the operation when I was young, like most of the people here. I was very active in swimming & gymnastics and I would not have been able to do that. But to have that major surgery at 38 totally changed my life. I could still do flips right before the operation. They cut so many muscles, my arms didn't even work, they still don't. Still I'm happy to just walk. But now I'm facing what many of you are facing, revision surgery. So we both end up at the same point. Our disease is just an awful one!!! I have been to physical therapy a few times. They act like I should be able to just use my knees & be normal. It always amazes me that to squat down like to get into a file cabinet. (She looks at me like, hey lady, you just do it this way). They don't even realize that to do that with a cement back, that's much more weight that I'm bending. (Hard to explained). When you do it with a fused back, you go forward. Another thing that I have noticed is that now that I'm older, doctors & surgeons don't care as much. It's like oh yeah, your knees are bad because you are older. No, my knees are bad because of my disease & being fused and all the twisting I have done to get up & down, or even pick up a magazine off the coffee table. I was never able to take a bath again, I'm sure some of you can picture it. Funny, huh.

It seems barbaric to me that they put screws & rods into our body's! The doctors oath, first do no harm, how can they do that to us? The way I get by is that I think of others who are in worse shape than I. Not just with scoliosis but other bad health problems. I often wish I would never had this operation even though I was very deformed but at least I could most things I wanted. But my curve would have probably gotten worse.

At this point in my life, I still have fun because I can walk but that is getting harder because of the pain. I don't want screws in my sacrum or to be fused, so it might be a wheel chair some day. I admire the people on this site so much!!! The courage and kindness they share with everyone. Thank you so much!

Sandy

Question of the Week #5

To increase the cumulative treasury of knowledge we are building atthis site -- and for possible inclusion in a book for others withsimilar spinal problems (either with attribution to you, oranonymously, as you wish) -- please consider replying to the followingquestion:(5) Has your spinal condition affected your work-life or yourfinances? For instance, have you had to stop working, or have youfound that you can no longer afford your previous standard of living?If so, how are you coping with these changes? Thanks in advance for your thoughts and advice in this area!Best,

[Guest guest]

Yes, I truly am blessed and I count my blessings every day. The

employer I was with when I had my revision surgery in 2003 was not

very accomodating so I am happy I had disability as a way out and

away from them. I do have the wish that everyone could have the same

type of employer I have.

> >

> > From: Rasche <elizabethrgonzalez@>

> > Subject: Question of the Week #5

> >

> > Date: Thursday, January 22, 2009, 11:51 AM

> >

> >

> >

> >

> >

> >

> > To increase the cumulative treasury of knowledge we are building

at

> > this site -- and for possible inclusion in a book for others with

> > similar spinal problems (either with attribution to you, or

> > anonymously, as you wish) -- please consider replying to the

> following

> > question:

> >

> > (5) Has your spinal condition affected your work-life or your

> > finances? For instance, have you had to stop working, or have you

> > found that you can no longer afford your previous standard of

> living?

> > If so, how are you coping with these changes?

> >

> > Thanks in advance for your thoughts and advice in this area!

> >

> > Best,

> >

> >

>