Re: Been off work about 3 Weeks now!!!!!

[Guest guest]

Hi Debbie,

My guess is your anxiety level is starting to go way up with all this

waiting and in-activity. My I suggest doing a combination of things you

really enjoy and/or listening to soothing music, watching comedies, going

for small walks (if you can), etc. You might want to talk with your friends

for the social part (girl/small talk). I found if I can keep my mind

occupied with other things then it helps. I know that sometimes that is hard

to do when pain keeps interferring.

As for mattresses and pillows, I prefer my waterbed (but my husband didn't)

but I found that the memory-foam is the next best thing, as well as the

memory foam pillow with the curved edges. My husband usually finds foam too

hot but doesn't mind the mattress but the pillow was too much so he uses the

feather pillows.

Hope my suggestions help and good luck in your journey.

Llweyn

Been off work about 3 Weeks now!!!!!

The waiting is the hardest thing. But boy am i getting more and

more depressed. Don't want to up my anti-depressives, but I am

sitting here with the biggest knot in my chest. Help me what can i

do to not go insane.

thanks for listening i feel all alone and scared.

Debbie

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 will try some of that stuff. It is just hard to get the

energy to do anything. I started rock painting but I can't seem to

do that either. Just want to sleep and that is not good. I hate

feeling this way. It is hard to go from not enough time in the

day to way to much time in a day.

Debbie

- In , Llweyn Friars

<mad.monk@s...> wrote:

> Hi Debbie,

>

> My guess is your anxiety level is starting to go way up with all

this

> waiting and in-activity. My I suggest doing a combination of

things you

> really enjoy and/or listening to soothing music, watching

comedies, going

> for small walks (if you can), etc. You might want to talk with

your friends

> for the social part (girl/small talk). I found if I can keep my

mind

> occupied with other things then it helps. I know that sometimes

that is hard

> to do when pain keeps interferring.

>

> As for mattresses and pillows, I prefer my waterbed (but my

husband didn't)

> but I found that the memory-foam is the next best thing, as well

as the

> memory foam pillow with the curved edges. My husband usually finds

foam too

> hot but doesn't mind the mattress but the pillow was too much so

he uses the

> feather pillows.

>

> Hope my suggestions help and good luck in your journey.

>

> Llweyn

>

> Been off work about 3 Weeks now!!!!!

>

>

> The waiting is the hardest thing. But boy am i getting more and

> more depressed. Don't want to up my anti-depressives, but I am

> sitting here with the biggest knot in my chest. Help me what can i

> do to not go insane.

>

> thanks for listening i feel all alone and scared.

>

> Debbie

>

>

>

>

>

> 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]

Debbie,

That's what we're all here for. Hang in there. And please do not increase

any meds without talking with your doctor! Do you see anyone for

counselling? It helps a lot. Also, a good cry isn't a bad thing now and then,

you know.

Please take care!

Carole

[Guest guest]

Debbie,

I'm sorry to hear you're going through all this. It's definitely not fun.

I am a quilter. That's how I pass my time when I'm feeling effortless and in

pain. It truly helps. I can usually just stay in bed and make a quilt. It takes

a looooooong time.

You mentioned rock painting. Have you looked in to beading? I think there are

some beads you can paint and then put on to strings for necklaces, bookmarks,

etc. Real detailed work, but definitely a way to pass the time.

Good Luck!!!

xoxo's

[Guest guest]

Hi Debbie,

I'm sorry to hear of the rough time you're having and understand it

well. Llweyn gives excellent suggestions in her post, I think I

tried them all. I used to fall asleep to the music soundtrack of the

movie TALK TO HER, every night, a beautiful c.d. that really did

soothe. Comedies, again, a good choice. I found myself distressed

by movies or shows that I normally wouldn't think twice about, and

literally exhausted by dark or violent movies, like the Lord of the

Rings, for heaven's sakes! Small doses of anything was all I felt

capable of. I think socializing was probably the hardest thing to

do. I felt like I had nothing to contribute and that I was

participating only partially because I was so distracted by pain. It

didn't help that my symptoms seemed to come on so quickly, or that

people tend to view " back problems " with the skepticism inherent in

that two word phrase. And getting into the nuts and bolts of this

condition is not exactly condusive to good conversation. More often

than not it leads to well-meaning advise along the lines of stiff

upper lips, pushing through the pain, or what miracle workers

chiropractors are! Not great for decreasing the feeling of being

weak and apart from everyone. Is this making you feel better yet?

Got off on a little rant there, sorry.

But I do feel more positive now. I've getting my head around this

new state of affairs. I've taken the severe edge off my pain with

meds, (including anti-depressants) physical therapy and exercise,

and that's been kind of empowering. I'm able to talk to people on

this board about flatback, comfortable knowing that they truly

understand, without doubts. That's made a huge difference and

relieved a lot of stress. And having this group of comrades-in-arms

has enabled me to be more like my old self to other people in my

life, with more confidence and less self-doubt and embarrassment

then I was feeling after symptoms snowballed me into this

distressing state. I am opting for surgery sooner, rather than

later. I'm a little scared about that, but that's the fact, Jack.

Hang in there Debbie. There are stages to this and right now you're

probably so overwelmed with the shock and pain that you need to curl

up in a shell for a while. It takes time, and it's a confusing

condition. Take care of yourself and try not to stess too much,

you're not alone.

All my best, Dianne

In , Llweyn Friars

> <mad.monk@s...> wrote:

> > Hi Debbie,

> >

> > My guess is your anxiety level is starting to go way up with all

> this

> > waiting and in-activity. My I suggest doing a combination of

> things you

> > really enjoy and/or listening to soothing music, watching

> comedies, going

> > for small walks (if you can), etc. You might want to talk with

> your friends

> > for the social part (girl/small talk). I found if I can keep my

> mind

> > occupied with other things then it helps. I know that sometimes

> that is hard

> > to do when pain keeps interferring.

> >

> > As for mattresses and pillows, I prefer my waterbed (but my

> husband didn't)

> > but I found that the memory-foam is the next best thing, as well

> as the

> > memory foam pillow with the curved edges. My husband usually

finds

> foam too

> > hot but doesn't mind the mattress but the pillow was too much so

> he uses the

> > feather pillows.

> >

> > Hope my suggestions help and good luck in your journey.

> >

> > Llweyn

> >

> > Been off work about 3 Weeks now!!!!!

> >

> >

> > The waiting is the hardest thing. But boy am i getting more and

> > more depressed. Don't want to up my anti-depressives, but I am

> > sitting here with the biggest knot in my chest. Help me what

can i

> > do to not go insane.

> >

> > thanks for listening i feel all alone and scared.

> >

> > Debbie

> >

> >

> >

> >

> >

> > 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 ,

My mother use to knit beautiful afgans and quilts. I will definatly

look into painting beads. I will check on line now!

Thanks Debbie

-- In , USNAWIFE@a... wrote:

> Debbie,

> I'm sorry to hear you're going through all this. It's definitely

not fun.

> I am a quilter. That's how I pass my time when I'm feeling

effortless and in pain. It truly helps. I can usually just stay in

bed and make a quilt. It takes a looooooong time.

> You mentioned rock painting. Have you looked in to beading? I

think there are some beads you can paint and then put on to strings

for necklaces, bookmarks, etc. Real detailed work, but definitely a

way to pass the time.

> Good Luck!!!

> xoxo's

>

[Guest guest]

Hi Dianne,

Small steps i guess is what the answer might be. I am

in such hurry to figure out what the heck is going on in my body. I

hate not being incontrol of it, for me the sharp pain between my

shoulders were the rod is broken seem to be intensifying. But is it

or is it my imagination. And this awful twitching and body flinches

really is getting on my nerves.

But on the other hand I just sat down and did some of my rock

painting. I have a broken patio block and i am painting a batch of

daisys in a planter. Looks pretty good so far, but it is a little

heavy. Now i am going to surf the net and see a technique on how to

paint leaves on plant stems.

Thanks for being there Dianne,

Debbie

P.S. I forgot to say you are right Llweyn is a great person and

have a great sence of humour.

In , " Dianne "

<Diannnes@a...> wrote:

> Hi Debbie,

>

> I'm sorry to hear of the rough time you're having and understand

it

> well. Llweyn gives excellent suggestions in her post, I think I

> tried them all. I used to fall asleep to the music soundtrack of

the

> movie TALK TO HER, every night, a beautiful c.d. that really did

> soothe. Comedies, again, a good choice. I found myself distressed

> by movies or shows that I normally wouldn't think twice about, and

> literally exhausted by dark or violent movies, like the Lord of

the

> Rings, for heaven's sakes! Small doses of anything was all I felt

> capable of. I think socializing was probably the hardest thing to

> do. I felt like I had nothing to contribute and that I was

> participating only partially because I was so distracted by pain.

It

> didn't help that my symptoms seemed to come on so quickly, or that

> people tend to view " back problems " with the skepticism inherent

in

> that two word phrase. And getting into the nuts and bolts of this

> condition is not exactly condusive to good conversation. More

often

> than not it leads to well-meaning advise along the lines of stiff

> upper lips, pushing through the pain, or what miracle workers

> chiropractors are! Not great for decreasing the feeling of being

> weak and apart from everyone. Is this making you feel better yet?

> Got off on a little rant there, sorry.

>

> But I do feel more positive now. I've getting my head around this

> new state of affairs. I've taken the severe edge off my pain with

> meds, (including anti-depressants) physical therapy and exercise,

> and that's been kind of empowering. I'm able to talk to people on

> this board about flatback, comfortable knowing that they truly

> understand, without doubts. That's made a huge difference and

> relieved a lot of stress. And having this group of comrades-in-

arms

> has enabled me to be more like my old self to other people in my

> life, with more confidence and less self-doubt and embarrassment

> then I was feeling after symptoms snowballed me into this

> distressing state. I am opting for surgery sooner, rather than

> later. I'm a little scared about that, but that's the fact, Jack.

>

>

> Hang in there Debbie. There are stages to this and right now

you're

> probably so overwelmed with the shock and pain that you need to

curl

> up in a shell for a while. It takes time, and it's a confusing

> condition. Take care of yourself and try not to stess too much,

> you're not alone.

>

> All my best, Dianne

>

>

> In , Llweyn Friars

> > <mad.monk@s...> wrote:

> > > Hi Debbie,

> > >

> > > My guess is your anxiety level is starting to go way up with

all

> > this

> > > waiting and in-activity. My I suggest doing a combination of

> > things you

> > > really enjoy and/or listening to soothing music, watching

> > comedies, going

> > > for small walks (if you can), etc. You might want to talk with

> > your friends

> > > for the social part (girl/small talk). I found if I can keep

my

> > mind

> > > occupied with other things then it helps. I know that

sometimes

> > that is hard

> > > to do when pain keeps interferring.

> > >

> > > As for mattresses and pillows, I prefer my waterbed (but my

> > husband didn't)

> > > but I found that the memory-foam is the next best thing, as

well

> > as the

> > > memory foam pillow with the curved edges. My husband usually

> finds

> > foam too

> > > hot but doesn't mind the mattress but the pillow was too much

so

> > he uses the

> > > feather pillows.

> > >

> > > Hope my suggestions help and good luck in your journey.

> > >

> > > Llweyn

> > >

> > > Been off work about 3 Weeks now!!!!!

> > >

> > >

> > > The waiting is the hardest thing. But boy am i getting more

and

> > > more depressed. Don't want to up my anti-depressives, but I am

> > > sitting here with the biggest knot in my chest. Help me what

> can i

> > > do to not go insane.

> > >

> > > thanks for listening i feel all alone and scared.

> > >

> > > Debbie

> > >

> > >

> > >

> > >

> > >

> > > 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]

Hi Debbie, this might be a little juvenile for you but have you ever thought of

working a puzzle. Our house is all oriental and I found a puzzle of a little

oriental girl and it is actually shaped like the girl. No flat borders. You

can put a glaze over these puzzles to hold them together and hang them as

pictures. I am saving mine til after surgery.

I must say that I am getting really scared to have the surgery after listening

to all the things that could go wrong or be a problem. At least I am going into

it with my eyes open. I won't be shocked at anything and maybe I will be

pleasantly surprised at the outcome!

Joyce

Been off work about 3 Weeks now!!!!!

> > >

> > >

> > > The waiting is the hardest thing. But boy am i getting more

and

> > > more depressed. Don't want to up my anti-depressives, but I am

> > > sitting here with the biggest knot in my chest. Help me what

> can i

> > > do to not go insane.

> > >

> > > thanks for listening i feel all alone and scared.

> > >

> > > Debbie

> > >

> > >

> > >

> > >

> > >

> > > 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]

Hi Debbie,

There is a Canadian Beader message board,

canadianbeaders/ that you might find of

interest. There's quite a few bead shop owners with websites, as well as

those that just enjoy beading. Hope this helps.

Llweyn

Re: Been off work about 3 Weeks now!!!!!

Thanks ,

My mother use to knit beautiful afgans and quilts. I will definatly

look into painting beads. I will check on line now!

Thanks Debbie

-- In , USNAWIFE@a... wrote:

> Debbie,

> I'm sorry to hear you're going through all this. It's definitely

not fun.

> I am a quilter. That's how I pass my time when I'm feeling

effortless and in pain. It truly helps. I can usually just stay in

bed and make a quilt. It takes a looooooong time.

> You mentioned rock painting. Have you looked in to beading? I

think there are some beads you can paint and then put on to strings

for necklaces, bookmarks, etc. Real detailed work, but definitely a

way to pass the time.

> Good Luck!!!

> xoxo's

>

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]

In a message dated 6/19/04 12:07:36 AM Eastern Daylight Time,

bichon4me@... writes:

I figure I'm butting in right now, but just wanted you to know that I cannot

think of a better person to listen to than Llewyn. I've not met her in

person, but feel as though I have. She is a very great lady and I would trust

her with my life. So, if she has some forward thinking help for you, take it

seriously. She is worth listening to!

Sincerely,

Carole (the elder)

[Guest guest]

Oh, Dianne,

Are you the same Dianne that I met last Sunday at our Feisty meeting? Will

you let me know? You seemed far more " up " on that particular day. Please

drop me a line?

Carole (the elder)

[Guest guest]

Oh Llweyn,

I shall continue to pray that you get your disability listing, as you

certainly need and deserve it. I will put you on our prayer list here tomorrow

(it

is too late tonight) and we will hope that something will come of it. If

you need any references, I would be happy to be one for you.

Sincerely,

Carole

[Guest guest]

-You are not butting in. Anything posted on the message board is

for all eyes.

But yes I agree I have never met Llywen either but I respect her

oppinion and think she is a very good lady too.

I am discovering that there are alot of good people on this site.

Everyone has been so supportive and helpful to me over these last

few weeks.

Thanks to everyone. Deb

- In , scolioly2@a... wrote:

>

> In a message dated 6/19/04 12:07:36 AM Eastern Daylight Time,

> bichon4me@c... writes:

>

>

>

>

>

> I figure I'm butting in right now, but just wanted you to know

that I cannot

> think of a better person to listen to than Llewyn. I've not met

her in

> person, but feel as though I have. She is a very great lady and I

would trust

> her with my life. So, if she has some forward thinking help for

you, take it

> seriously. She is worth listening to!

> Sincerely,

> Carole (the elder)

>

>

>

[Guest guest]

Thank you Debbie and Carole, especially, for your praises. I know that we

are all going through a tough time with this journey and even I sometimes

find it hard to take my own suggestions. Life makes it hard sometimes but my

thinking is that my suggestions might help someone better than me at a

particular time. I know that I'm being anxious to have my Canada disability

approved right now, since I applied at the beginning of January and haven't

heard definitely yet. They are waiting for the neuro-surgeon's report until

the end of June. If they don't hear from him, they don't think I am disabled

enough to qualify, based on the information right now. The neurologist

couldn't give them a definite opinion, without an ortheopaedic surgeon's

consultation, and I'm on a 1-2 year waiting list to see him. I feel like

another brick wall approaching, which just gets me frustrated and mad, or

should I say fiesty.

My husband just retired, after over 35 years, from the Canadian Navy and I

was given a plague of Appreciation of Support from the Vice-Admiral, who I

worked with for the family support when the ship was sent to East Timor on

very short notice. So that appreciation was much appreciated. Then my

brother had his 60th birthday party, where my mother and his network showed

their appreciation for all that I do and have done. So you can say that I am

soaking up all the appreciation right now since my energy level is way down.

Of course, it didn't help having broncitus earlier this month, which

increased the pain level. I am learning to listen to my body more and only

doint what is really necessary, treating myself the rest of the time.

Again, Debbie and Carole, thank you. The two of you are special people to

me, too. Keep those humour postings coming!

Llweyn

Re: Been off work about 3 Weeks now!!!!!

In a message dated 6/19/04 12:07:36 AM Eastern Daylight Time,

bichon4me@... writes:

I figure I'm butting in right now, but just wanted you to know that I

cannot

think of a better person to listen to than Llewyn. I've not met her in

person, but feel as though I have. She is a very great lady and I would

trust

her with my life. So, if she has some forward thinking help for you, take

it

seriously. She is worth listening to!

Sincerely,

Carole (the elder)

[Guest guest]

Hi Carole,

Yes, I'm the person you met at the Boston lunch. If, by " up "

you mean standing straight, my post referred to my posture last

year, when my back was becoming increasingly stiff and painful over

a comparatively short length of time; a few months; after 24 years

of relatively problem-free post-op Harrington Rod surgery. I DID

become stiff in my early to mid twenties; unable to bend to put on

shoes, never able to lay (lie? That will always be a blank space in

my mind) on my back or stomach for more then a few minutes

(extremely painful!)

The back/stomach thing never changed, but I got back much

of my flexibility over a period of time by dropping pounds

and even staying a bit underweight, and exercising. I made other

adjustments, like using a back support while doing yard or

housework. I didn't think too much about it, I'd been warned about

increased chance of arthritis in the back after having scoliosis

surgery. The support helped me work longer and not suffer as much

afterwards.

Last year, though, it got to the point where sitting for even

fifteen minutes was unbearable and I had to keep moving around to

keep from stiffening up. My hips and back would lock and I wasn't

able to stand straight after sitting OR standing for even short

periods. I was still exercising as I always had, my weight was where

it should be... but the pain, stiffness and difficulty maintaining

straight posture progressed to an alarming degree. I could see my

back changing almost daily, I no longer had any space between the

small of my back and the floor when doing an exercise. My ribcage on

the left side was creeping farther down my back.

Then, after an unrelated surgery in August when I was bedridden

for a few days, I had more pain then I've felt since my Harrington

Rod surgery. Note, this also happened when I had the flu a month

earlier and was bedridden. It was so bad that I'd gone online and

searched under " Scoliosis " to see if I could find some kind of

explanation, or different exercises to try, SOMETHING! (My referred

ortho wouldn't see me for over a month, and that was after

pitiful begging on my part) So at Mina's

website I noticed the link to Flatback, but it was an unfamiliar

term and I didn't imagine it applied to me. I don't know why I

eventually did click on it, but once there I realized how much my

symptoms matched the ones mentioned.

I started seeing ortho's, was prescribed pysical therapy to

start and high doses of anti-inflammatories. I invested in a few

back supports for my chairs and made conscious efforts to keep

my shoulder blades back, ribcage pulled up high, and tummy pulled in

an attempt to strengthen my core muscles to maintain straight

posture as much as possible. When I forget to do this, I look about

80 years old when I get up.

ANYway, after 4 or 5 months I was stronger and the edge was off

the pain and more bearable. It was actually when I started

taking an anti-depressant (anti-anxiety?) medication that my

threshhod for pain really increased. That and vicadin when I have to

do anything for a longer period of time, such as the hour drive to

Boston and our lunch. It doesn't exactly make me feel stronger, but

it's enough of a relaxant that I feel more flexible, not to mention

gregarious and way more talkative than is my usual style.

But I was in bed again with the flu this past week

and was scared by how quickly I slid back in such a short period.

I'm opting for surgery sooner rather than later because I feel

like I'm in a losing battle just to keep myself hanging on to a much

abbreviated version of my old life.

This is the second time you've mentioned my posture, Carole. Am

I being paranoid thinking that I need to write this lengthy post as

explanation why I didn't looked stooped enough?

Best, Dianne

> Oh, Dianne,

> Are you the same Dianne that I met last Sunday at our Feisty

meeting? Will

> you let me know? You seemed far more " up " on that particular

day. Please

> drop me a line?

> Carole (the elder)

>

>

>

[Guest guest]

Hi Dianne,

Thanks for the lovely letter. By the way (since you mentioned " lie " and

" lay " ) just try to remember that hens lay eggs and people lie down. That is

the

way I keep them apart.

When I said you seemed " up " , I meant it as in " happy " . No one need stand

any certain way to prove to me their back problems! As much as we are all the

same, so are we all different! I'm so sorry that you've been fighting the

flu, etc. We don't need extra problems in our cases!

I give you so much credit for all the work you have done yourself to help

reduce the pain, etc. Our particular ailment doesn't allow for a lot of

resting, at best. No matter how sick I have been in the hospital, my doctors

always hurry me along, explaining that in my situation lying around will only

make

me more stiff. There have been times when that made me particularly angry!

Other people could lie there and be waited on, etc. But, the doctors were

correct. I fair so much better with physical activity --maybe it's only

walking, or only being up on my feet when I'd rather quit. However, if I give

in,

I get so stiff and weak that I do have to " start all over again " ! And that

is not a pretty picture! Right now my biggest activity is weeding the

garden. And, I pay if I do, and pay if I don't! I still feel better

emotionally

when I do the work, even though the docs were referring to physical condition.

I was a stomach sleeper until not too long ago. My spinal problems caused

my bladder to shut down (that was after an awful go-around with my kidneys,

which ended with surgery, also). Eventually, the bladder was removed and I

received a urostomy (ileal conduit) which means that I have a stoma on my right

abdomen. That means that, at night, I must hook up to some equipment that

will catch all the urine that is manufactured all night. So, I have a tube

running from there, a mask for my sleep apnea, and oxygen which attaches to

that

mask. Sort of hard to just flip over! It's always been hard for me to

believe that all of this came from my scoliosis -- and sometimes I can get

pretty

" down " about it all. My limitations are many and I tire so easily.

But, you know, the more we all get to know one another, I think that the

more I understand that not one of us has walked away with simply " scoliosis " .

The sequelae from this problem just goes on and on and...............! That

is why a group such as this one is so good for all of us. Not just to tell

horror stories, but to understand that others are suffering through whatever it

is that is bothering me (you) at the moment.

You have really done your homework! I've only begun! And, I've had more

support here than I ever had from my original family. (My husband is a gem, as

I'm sure you may have noticed.) I don't think I'd have come through all my

stuff without him. There is no scoliosis in my family and, thank God, none

of my daughters and granddaughters have shown any signs of it!

I thoroughly enjoyed your company, Dianne, and your funny stories about you

and your brother, too! I so enjoyed the day, and really hope we get to

repeat it somewhere in the not-too-distant future.

Thank you for writing, and be sure, I know you've worked very hard to stay

on your feet, and you have nothing to " prove " to anyone!

Most sincerely,

Carole (the elder)

[Guest guest]

Carole,

Thanks so much for your response. The next morning I wished

that I had waited to mail my reply so I could have kept the question

about being stooped out of it. I was feeling particularly stressed

and emotional when I wrote it. (nothing to do with you, but

definately the reason why I misconstured your post)

Carole, you've been through the mill medically! I'm so sorry to

hear about all the problems you've had, and wow!, all that hardware

while you sleep! You have certainly kept a positive attitude,

though. That's so worth struggling to maintain in order to not get

swallowed up by this physical crap. But tough, especially at it's

worst, when pain and weakness can consume so much mental and

physical energy.

I enjoyed meeting you as well. I do wish we'd had a round

table, I didn't get to talk with you or Anne nearly as much as I

would have liked . Your husband, not at all! So I'm definately on

board for more get-togethers.

As far as moving around, that's definately the case with me as

well. I loosen up so much once I'm walking. Even dancing is great,

though a much stiffer facsimile of how I was once able to move.

Off the subject of our posts for a minute here, I went to NEBH

yesterday for my first blood donation(6/21). I figured Anne might

still be there and spent a good deal of time trying to track her

down. I thought I knew her last name, but when I told them Anne

Mac, it was a no go. They had three other Anne's, but because

of HEPA, they wouldn't tell me the last names (I figured I would

recognize it if I heard it) and eyed me suspiciously, like I might

be a terrorist or something! But the person manning the info desk

was extremely helpful and called Rand's office in an attempt to

track her down. As it turned out, she was discharged yesterday, the

day before maybe? That's why " Mac " wasn't on the list, not

because I had forgotten it. In any case, I hope all is well with her.

Carole, have you tried a back support like the one I mentioned

using when I garden or do yardwork? How about those garden stools

with the handles on the sides, I've never tried one, but they look

pretty handy.

Take care, and watch that flipping over in bed!

All my best, Dianne

> Hi Dianne,

> Thanks for the lovely letter. By the way (since you

mentioned " lie " and

> " lay " ) just try to remember that hens lay eggs and people lie

down. That is the

> way I keep them apart.

>

> When I said you seemed " up " , I meant it as in " happy " . No one

need stand

> any certain way to prove to me their back problems! As much as

we are all the

> same, so are we all different! I'm so sorry that you've been

fighting the

> flu, etc. We don't need extra problems in our cases!

>

> I give you so much credit for all the work you have done yourself

to help

> reduce the pain, etc. Our particular ailment doesn't allow for a

lot of

> resting, at best. No matter how sick I have been in the hospital,

my doctors

> always hurry me along, explaining that in my situation lying

around will only make

> me more stiff. There have been times when that made me

particularly angry!

> Other people could lie there and be waited on, etc. But, the

doctors were

> correct. I fair so much better with physical activity --maybe

it's only

> walking, or only being up on my feet when I'd rather quit.

However, if I give in,

> I get so stiff and weak that I do have to " start all over

again " ! And that

> is not a pretty picture! Right now my biggest activity is

weeding the

> garden. And, I pay if I do, and pay if I don't! I still feel

better emotionally

> when I do the work, even though the docs were referring to

physical condition.

>

> I was a stomach sleeper until not too long ago. My spinal

problems caused

> my bladder to shut down (that was after an awful go-around with

my kidneys,

> which ended with surgery, also). Eventually, the bladder was

removed and I

> received a urostomy (ileal conduit) which means that I have a

stoma on my right

> abdomen. That means that, at night, I must hook up to some

equipment that

> will catch all the urine that is manufactured all night. So, I

have a tube

> running from there, a mask for my sleep apnea, and oxygen which

attaches to that

> mask. Sort of hard to just flip over! It's always been hard for

me to

> believe that all of this came from my scoliosis -- and sometimes

I can get pretty

> " down " about it all. My limitations are many and I tire so

easily.

>

> But, you know, the more we all get to know one another, I think

that the

> more I understand that not one of us has walked away with

simply " scoliosis " .

> The sequelae from this problem just goes on and on

and...............! That

> is why a group such as this one is so good for all of us. Not

just to tell

> horror stories, but to understand that others are suffering

through whatever it

> is that is bothering me (you) at the moment.

>

> You have really done your homework! I've only begun! And, I've

had more

> support here than I ever had from my original family. (My

husband is a gem, as

> I'm sure you may have noticed.) I don't think I'd have come

through all my

> stuff without him. There is no scoliosis in my family and, thank

God, none

> of my daughters and granddaughters have shown any signs of it!

>

> I thoroughly enjoyed your company, Dianne, and your funny stories

about you

> and your brother, too! I so enjoyed the day, and really hope we

get to

> repeat it somewhere in the not-too-distant future.

>

> Thank you for writing, and be sure, I know you've worked very hard

to stay

> on your feet, and you have nothing to " prove " to anyone!

>

> Most sincerely,

>

> Carole (the elder)

>

>

>

[Guest guest]

Oh, my word! Did I know I should get out my Harbrace Manual? No, I did

not! Sharon, you have explained it all, from every corner and every aspect!

I've been roaring here! Next time I'll know better than to help without my

professor at my side!

Love,

Carole

[Guest guest]

Back atcha!

[Guest guest]

He-he. :^D

Re: Re: Been off work about 3 Weeks now!!!!!

Oh, my word! Did I know I should get out my Harbrace Manual? No, I did

not! Sharon, you have explained it all, from every corner and every aspect!

I've been roaring here! Next time I'll know better than to help without my

professor at my side!

Love,

Carole