sorry

February 16, 2006

Not to worry, . We've all been there. When we feel rotten, things are

harder to deal with.

Cheers.

susan smith <bizzare48@...> wrote:

I would like to say I am sorry to everyone in the group for my fight with Jim

and Tim, I Just don't like it when people think they know everything. But for my

part it is over. won't go there.

So maybe I can blame it on the weather, really strange here today, snow with

thunder and lightening. Some areas around us got up to 12 inches of snow.

Luckily we are near a lake, and lake effect kept our snowfall down to a couple

of inches.'It is going to be really slippery in the morning though as there is

slush under the snow.

In WI

---------------------------------

What are the most popular cars? Find out at Autos

January 16, 2007

I " m new here and a parent to a 10 year old Aspie and I wanted to comment on

this issue. I say sorry a lot. I'm actually trying to work on this but I

use it as a form of " Know I'm thinking of you and here to support you. "

Rather than I'm sorry in the traditional sense. Just to point out another

side. Your friend might not have meant it in a that's terrible way. I

understand your feeling on it though. I wouldn't have my Aspie any other

way.

Tiff

http://www.xanga.com/neuroticfitchmom

( ) " Sorry "

> Today a friend of mine told me that she was sorry I believed two of my

> children have Asperger's. It struck me oddly. I thought " What is there

> to be sorry about? " It doesn't change anything. They are exactly the

> same as they were before I thought they had Asperger's. The issues and

> difficulties are just the same and so are the quirks and cuteness. I

> think getting a diagnosis will be a blessing, so I can better learn to

> help my kids get where they need to be and help their teachers learn

> to deal with their issues better.

>

> It's just funny that nobody expresses " sorry " to you because your kids

> are difficult or seem to be misbehaving, but the minute they hear the

> label, they're so " sorry. "

>

> I am not sorry, and I don't feel like I've lost something or been

> burdened. Sure, it might not be as easy to raise my kids as it is for

> some people to raise theirs, but then there are other kids who don't

> have Asperger's who have their own issues. All kids have issues. We're

> just lucky that there's a name for our kids' struggles and that there

> is a body of research and experts we can turn to for help.

>

> I feel sorry for all those parents who can't get that help because

> their kids' behavior doesn't fit into any cateogry.

>

> Cat

>

January 16, 2007

It's funny, I feel the same way you do. I am new to the group, and

my 4 year old son was recently diagnosed with Aspergers. I felt

so relieved to put a name to it and to be told that he was eligible

for services through the county. I had this tremendous relief that

his behavior was not because I am a bad mother, and that there are

things we can learn to help him improve his behavior and help him

relate better with people. I guess those who say they are sorry mean

that they are sorry that the child has to have these issues in the

first place, and they have never had the experience of feeling so

helplees to help your child, as we did before we got the diagnosis.

Therese

>

> Today a friend of mine told me that she was sorry I believed two of

my

> children have Asperger's. It struck me oddly. I thought " What is

there

> to be sorry about? " It doesn't change anything. They are exactly

the

> same as they were before I thought they had Asperger's. The issues

and

> difficulties are just the same and so are the quirks and cuteness.

I

> think getting a diagnosis will be a blessing, so I can better learn

to

> help my kids get where they need to be and help their teachers

learn

> to deal with their issues better.

>

> It's just funny that nobody expresses " sorry " to you because your

kids

> are difficult or seem to be misbehaving, but the minute they hear

the

> label, they're so " sorry. "

>

> I am not sorry, and I don't feel like I've lost something or been

> burdened. Sure, it might not be as easy to raise my kids as it is

for

> some people to raise theirs, but then there are other kids who

don't

> have Asperger's who have their own issues. All kids have issues.

We're

> just lucky that there's a name for our kids' struggles and that

there

> is a body of research and experts we can turn to for help.

>

> I feel sorry for all those parents who can't get that help because

> their kids' behavior doesn't fit into any cateogry.

>

> Cat

>

January 16, 2007

I guess people just don't know what to say and " sorry " seems the

easiest. I too was relieved to have a " label " because it meant I could

do something about it. I asked my son if he could have someone take

the Aspergers away, would he want them too. He said no, because it is

just who I am. So that made me feel better. And I just can't imagine

him without his quirks.

>

January 16, 2007

>

Hi, I'm new here too. I didn't mean that I thought badly of my

friend for saying it, only that I realized there really isn't

anything to be sorry for or about, because there's nothing there now

that wasn't there before.

Part of me feels like I should be more quiet here, since I don't

even have an official diagnosis. Really I just wanted to see what

others had to say about their kids, too, and see if that did sound

like what I am experiencing.

But I've already learned a lot; someone mentioned sensory processing

disorder, which I was unfamiliar with and then that night another

friend who is a teacher gave me a book on it because she thought it

described my son, which is what the other mother here said. So

everyone is very helpful!

Cat

> I " m new here and a parent to a 10 year old Aspie and I wanted to

comment on

> this issue. I say sorry a lot. I'm actually trying to work on

this but I

> use it as a form of " Know I'm thinking of you and here to support

you. "

> Rather than I'm sorry in the traditional sense. Just to point out

another

> side. Your friend might not have meant it in a that's terrible

way. I

> understand your feeling on it though. I wouldn't have my Aspie

any other

> way.

> Tiff

>

> http://www.xanga.com/neuroticfitchmom

> ( ) " Sorry "

>

> > Today a friend of mine told me that she was sorry I believed two

of my

> > children have Asperger's. It struck me oddly. I thought " What is

there

> > to be sorry about? " It doesn't change anything. They are exactly

the

> > same as they were before I thought they had Asperger's. The

issues and

> > difficulties are just the same and so are the quirks and

cuteness. I

> > think getting a diagnosis will be a blessing, so I can better

learn to

> > help my kids get where they need to be and help their teachers

learn

> > to deal with their issues better.

> >

> > It's just funny that nobody expresses " sorry " to you because

your kids

> > are difficult or seem to be misbehaving, but the minute they

hear the

> > label, they're so " sorry. "

> >

> > I am not sorry, and I don't feel like I've lost something or been

> > burdened. Sure, it might not be as easy to raise my kids as it

is for

> > some people to raise theirs, but then there are other kids who

don't

> > have Asperger's who have their own issues. All kids have issues.

We're

> > just lucky that there's a name for our kids' struggles and that

there

> > is a body of research and experts we can turn to for help.

> >

> > I feel sorry for all those parents who can't get that help

because

> > their kids' behavior doesn't fit into any cateogry.

> >

> > Cat

> >

February 3, 2007

I HAVE A 16 YEARS ASPIE, AND LIVE IN MISSISSIPPI! CALL ME SOMETIME, WE CAN HELP

EACH OTHER. ROBIN-MADISON, MS. 601-605-6030 OR 862-9800

" Ms. Mississippi " <neuroticfitchmom@...> wrote: I " m new here

and a parent to a 10 year old Aspie and I wanted to comment on

this issue. I say sorry a lot. I'm actually trying to work on this but I

use it as a form of " Know I'm thinking of you and here to support you. "

Rather than I'm sorry in the traditional sense. Just to point out another

side. Your friend might not have meant it in a that's terrible way. I

understand your feeling on it though. I wouldn't have my Aspie any other

way.

Tiff

http://www.xanga.com/neuroticfitchmom

( ) " Sorry "

> Today a friend of mine told me that she was sorry I believed two of my

> children have Asperger's. It struck me oddly. I thought " What is there

> to be sorry about? " It doesn't change anything. They are exactly the

> same as they were before I thought they had Asperger's. The issues and

> difficulties are just the same and so are the quirks and cuteness. I

> think getting a diagnosis will be a blessing, so I can better learn to

> help my kids get where they need to be and help their teachers learn

> to deal with their issues better.

>

> It's just funny that nobody expresses " sorry " to you because your kids

> are difficult or seem to be misbehaving, but the minute they hear the

> label, they're so " sorry. "

>

> I am not sorry, and I don't feel like I've lost something or been

> burdened. Sure, it might not be as easy to raise my kids as it is for

> some people to raise theirs, but then there are other kids who don't

> have Asperger's who have their own issues. All kids have issues. We're

> just lucky that there's a name for our kids' struggles and that there

> is a body of research and experts we can turn to for help.

>

> I feel sorry for all those parents who can't get that help because

> their kids' behavior doesn't fit into any cateogry.

>

> Cat

>

October 24, 2007

Hi ,

Don't be sorry. I think you *can* bring up what is happening to

you. I must admit I haven't followed the previous topic very much at

all, assuming it was the " -5 months post op " thread. That being

said, discussing what's on your mind is almost always encouraged.

You may not always get the reaction you wanted, but that may not be

bad either.

I just went back and reread the topic. I really didn't notice

anything that, discussion-wise, was bad. I also don't see anything

that could be taken as " you shouldn't be talking about this " . So,

post away!!! :-)

>

> I am sorry I brought up the whole thing about pain medication. I

was

> only trying to see if somebody could tell me they experienced the

same

> thing, so I would not feel so terrible. Thank you . I guess

I

> was wrong about this group that you can share what is happening to

you,

> I feel worse now, now I feel like I shouldn't have gotten off the

pain

> medication and I feel like I should not have any pain at all. That

I am

> just laying around with pain. thank you for your honesty

and I

> will follow your wisdom.

>

October 24, 2007

,

I remember being on Oxycontin/codone. Yes, they are powerful meds

and made me feel " safe " (meaning, I wasn't hurting all the time and I

could have a life thinking of other things than pain). I weaned

myself off under my ortho's instructions, but it took awhile. I was

out of work for seven months with my last fusion, so if you're still

having difficulties at five months, don't feel bad.

Since constipation was mentioned, I must also say I tolerate opioids

better than some in this group. With the Oxy, hydro, and even

morphine, I don't seem to have any major constipation issues. These

meds also don't make me loopy to the point of being non-functional.

I get a bit tired and sometimes a bit spacey (as my wife would tell

you), but overall, I can function somewhat normally.

-- In , " astreeff " <astreeff@...>

wrote:

>

> I am sorry I brought up the whole thing about pain medication. I

was

> only trying to see if somebody could tell me they experienced the

same

> thing, so I would not feel so terrible. Thank you . I guess

I

> was wrong about this group that you can share what is happening to

you,

> I feel worse now, now I feel like I shouldn't have gotten off the

pain

> medication and I feel like I should not have any pain at all. That

I am

> just laying around with pain. thank you for your honesty

and I

> will follow your wisdom.

>

October 25, 2007

Dear ,

Of course this is the place to discuss issues following surgery. Pain med's sometimes can be a touchy topic. I was lucky following both of my revisions to get off pain med's fairly quickly, stepped off the really stong stuff by about 2 months and Vicodin by three, but that was only because I didn't need them. I must also say that my doc isn't big on giving pain med's out, did that influence my moving off them fairly quickly, maybe, but for the most part I just was doing better. I'm sure if I needed pain med's long term, I would have been sent to pain Mgt. Also for years(pre Flatback surgery) while dealing with my ever increasing disability and pain I never used more than Tylenol, and Motrin, and Feldene(till I gained 20 lbs while on it), so I never got used to med's stronger than that. I don't know what you were on pre-revision, but I think that can play a part in trying to whind down off med's, tolerance and your body being used to it. Peggy described well her feeling following her going down and getting off the med's, as she had some of the same symptoms you did. I truly didn't have that experience, so since I couldn't add much to the discussion, other than now to be of a support.

For post op pain I was on a Fentanyl patch, so I didn't have the oxy experience. The Fentanyl patch did a number on my digestive track, vomitting and severe constipation, really awful, but as a bonus I lost forty much needed pounds( no way to loose it). I wish I could remember my patch levels, but went home on one strength and stepped down at three weeks, and went off completely due to the vomitting at six weeks to Vicodin. I did experience exhaustion, was it due to changing the med's, maybe, the weight loss, maybe, or peri-menopause I was sent into big time( Flashing all the time and night sweats). Doc's did say not to go off quickly or abruptly, weaning down under a doc's supervision was key, and I did follow that.

In a group like ours, with our varying spines and complexity, outcomes of course will vary, as will recoveries. My recovery will probably not be like anothers, might have some similarities, but was truly mine. Back when I started my surgical journey to get my Flatback fixed in 2000, finding online groups about Flatback scared the living hell out of me, there truly no good outcome stories on the board. Back in 2002 when my surgeries were over and I was doing well( Three surgeries to get me where I am, a decompression, and two full revisions in 24 months, over 24 hours of surgery time), and I expressed my joy at my good outcome, I had people kinda express that I must be lying since I claimed to be pain free. I was, and am. Blessed, truly, and just why I came out this way and others don't, who knows. I'm good now, and hope I'll always be, but if things go south, and they can, I'm lucky to be here to lean on the wisdom of members here who have dealt with continuing pain.

So we have to walk the path of giving people hope of a painfree existance, but tempered with the knowledge that some will need continuing pain mgt to get a the best quality of life they can. I in my messages am very careful to temper things. While there are some like me who have found revision got rid of our pain, there are others who won't have that but such a reduction, that life is more manageable. Also getting upright has a big benefit to not only our backs but other areas of the body aren't as strained. So while there is no way to judge why some of us come through this easier than others, we have to be mindful that there is so much differing in our spines( even though we have a Flatback diagnosis) that painfree may not be possible for all. I truly went into my revisions looking for a reduction in pain, Kumar thought that would be the best I would get due to the level of arthritis I had, but I got the whole shebang, painfree land. Not a day goes by that I'm not thankful for my outcome, and I truly wish everyone going through this had the same.

I'm going to really step out and say that dropping off med's should be done very carefully, especially if you have been on them long term. I'm not a doc, follow instructions carefully, and if you are having such terrible reactions to stepping down or completely off, get to a medical provider ASAP. There are ways to do it more prudently than going as you put" Cold Turkey" as that can have bad reactions in many of your bodily systems, and can be down right dangerous. Like my pain control after surgery Fentanyl cannot be left by going off it suddenly, dangerous. If your surgeon is less than helpful transistioning off med's, or you need more long term pain control ask for a pain mgt referal, especially those who go with doc's out of state from them. Surgeons are good cutters, not necessarly good with pain issues. Some will have to move on to doc's that deal with pain fulltime, for continuing long term pain control. Bonnie is a good resource to speak to someone who deals with continuing pain, but is still thankful for her revision.

We have to balance and be mindful that all of us will come out of this experience differently. I'm painfree sure, but have a ream of challenges physically that others here do and don't have. Does this make my outcome better than someone who has some pain that is managed, maybe not. By going to the retreat this year I was able to see just what others can do physically, some things that I just can't do. Jealous, sure, but my body is that, mine. I'm fused very high, T1 and to the sacrum, so the majority of my spine is fused, so sure there will be some difference between me and others who aren't fused as high. I have a boat load of hardware, and a weird configuration to it, and that does limit movement for me. And while I wish I had the movement that say Kam has, I'm me and the totality of just me, so while Kam and I both had revision, my surgery was mine, as my recovery was mine, and while it all falls under revision, it can vary.

So to end this rambling message, know we are there to support you, whether or not you need pain med's to deal with your post-op pain. Know recovery rates vary a lot, quite a lot need pain med's for upwards of a year just from the surgery and the adjustment to your NEW body stance. You may find that other body parts will revolt to you being upright, my shoulders and then my elbows gave me fits, some others find their knees painful. I don't know if you were pushed to get off your meds the way you did it, or you just wanted off them, but take it easy on yourself, reducing and allowing your body to adjust, then reducing some more, allows your body not to have that awful shock, and for you to build up your strength accordingly, without the whammo affect. Know that while the pain will reduce for most of us after surgery, the exhaustion continues for a good long while. I tired easily at first and while it got progressively better, it took 18 months for me to feel like I had my old energy level back. For me the exhaustion was always worse than the pain post op, that feeling like I'd never be my old self. Thats why we are careful to let you guys know going into surgery that this is a LONG recovery, and the more time you get away from surgery you'll realize just how long it is. You are you, and you can't judge yourself by what another revisee is doing at the same month level in recovery you are at, it's apples and oranges. So take it one day at a time, time will always be your friend, and alas it just takes time!

[ ] Sorry

I am sorry I brought up the whole thing about pain medication. I was only trying to see if somebody could tell me they experienced the same thing, so I would not feel so terrible. Thank you . I guess I was wrong about this group that you can share what is happening to you, I feel worse now, now I feel like I shouldn't have gotten off the pain medication and I feel like I should not have any pain at all. That I am just laying around with pain. thank you for your honesty and I will follow your wisdom.

October 25, 2007

Thank you for your words of wisdom, I think I was on a self pity trip

when I wrote the message, I have been real hard on myself lately.

The reason I got off pain medication was that I was tapering down and

the less I took the more my body wanted it oxycontin that is I

started off at 80mg twice a day, which I found out recently is a very

high dose. I was only on vicodin pre surgery for about a couple of

months so I had build a tolerence level at least that is what the doc

said and me having pneumonia after surgery they put me on a high dose

to control the pain.

Anyways I was on 80mg twice a day till about August when I started

the tapering, it was not working for me, so I had to make a big

decision I had to go cold turkey of course my doctor was not happy

and of course it should not be done but I had no choice in my mind I

was taking to many and that was not good.

A friend who also is a nurse has been helping the last couple of

weeks during detox said that oxycontin gave me a sense of well being

and that is why I was able to acomplish alot.

So of course I wanted to take more so I could do more, well I hit

rock bottom as they say. Now I feel like I am back to the beginning

and struggling to go to work, I am hurting all the time, the doc says

it could be because I went cold turkey who knows.

The reason I am saying all this and the reason I brought it up was

because I wanted to let anybody know that they may not be alone if

this happened to them.

Anyways I went to work and that is a good day for me

>

> Dear ,

>

> Of course this is the place to discuss issues following surgery.

Pain med's sometimes can be a touchy topic. I was lucky following

both of my revisions to get off pain med's fairly quickly, stepped

off the really stong stuff by about 2 months and Vicodin by three,

but that was only because I didn't need them. I must also say that my

doc isn't big on giving pain med's out, did that influence my moving

off them fairly quickly, maybe, but for the most part I just was

doing better. I'm sure if I needed pain med's long term, I would have

been sent to pain Mgt. Also for years(pre Flatback surgery) while

dealing with my ever increasing disability and pain I never used more

than Tylenol, and Motrin, and Feldene(till I gained 20 lbs while on

it), so I never got used to med's stronger than that. I don't know

what you were on pre-revision, but I think that can play a part in

trying to whind down off med's, tolerance and your body being used to

it. Peggy described well her feeling following her going down and

getting off the med's, as she had some of the same symptoms you did.

I truly didn't have that experience, so since I couldn't add much to

the discussion, other than now to be of a support.

>

> For post op pain I was on a Fentanyl patch, so I didn't have the

oxy experience. The Fentanyl patch did a number on my digestive

track, vomitting and severe constipation, really awful, but as a

bonus I lost forty much needed pounds( no way to loose it). I wish I

could remember my patch levels, but went home on one strength and

stepped down at three weeks, and went off completely due to the

vomitting at six weeks to Vicodin. I did experience exhaustion, was

it due to changing the med's, maybe, the weight loss, maybe, or peri-

menopause I was sent into big time( Flashing all the time and night

sweats). Doc's did say not to go off quickly or abruptly, weaning

down under a doc's supervision was key, and I did follow that.

>

> In a group like ours, with our varying spines and complexity,

outcomes of course will vary, as will recoveries. My recovery will

probably not be like anothers, might have some similarities, but was

truly mine. Back when I started my surgical journey to get my

Flatback fixed in 2000, finding online groups about Flatback scared

the living hell out of me, there truly no good outcome stories on the

board. Back in 2002 when my surgeries were over and I was doing well(

Three surgeries to get me where I am, a decompression, and two full

revisions in 24 months, over 24 hours of surgery time), and I

expressed my joy at my good outcome, I had people kinda express that

I must be lying since I claimed to be pain free. I was, and am.

Blessed, truly, and just why I came out this way and others don't,

who knows. I'm good now, and hope I'll always be, but if things go

south, and they can, I'm lucky to be here to lean on the wisdom of

members here who have dealt with continuing pain.

>

> So we have to walk the path of giving people hope of a painfree

existance, but tempered with the knowledge that some will need

continuing pain mgt to get a the best quality of life they can. I in

my messages am very careful to temper things. While there are some

like me who have found revision got rid of our pain, there are others

who won't have that but such a reduction, that life is more

manageable. Also getting upright has a big benefit to not only our

backs but other areas of the body aren't as strained. So while there

is no way to judge why some of us come through this easier than

others, we have to be mindful that there is so much differing in our

spines( even though we have a Flatback diagnosis) that painfree may

not be possible for all. I truly went into my revisions looking for a

reduction in pain, Kumar thought that would be the best I would get

due to the level of arthritis I had, but I got the whole shebang,

painfree land. Not a day goes by that I'm not thankful for my

outcome, and I truly wish everyone going through this had the same.

>

> I'm going to really step out and say that dropping off med's should

be done very carefully, especially if you have been on them long

term. I'm not a doc, follow instructions carefully, and if you are

having such terrible reactions to stepping down or completely off,

get to a medical provider ASAP. There are ways to do it more

prudently than going as you put " Cold Turkey " as that can have bad

reactions in many of your bodily systems, and can be down right

dangerous. Like my pain control after surgery Fentanyl cannot be left

by going off it suddenly, dangerous. If your surgeon is less than

helpful transistioning off med's, or you need more long term pain

control ask for a pain mgt referal, especially those who go with

doc's out of state from them. Surgeons are good cutters, not

necessarly good with pain issues. Some will have to move on to doc's

that deal with pain fulltime, for continuing long term pain control.

Bonnie is a good resource to speak to someone who deals with

continuing pain, but is still thankful for her revision.

>

> We have to balance and be mindful that all of us will come out of

this experience differently. I'm painfree sure, but have a ream of

challenges physically that others here do and don't have. Does this

make my outcome better than someone who has some pain that is

managed, maybe not. By going to the retreat this year I was able to

see just what others can do physically, some things that I just can't

do. Jealous, sure, but my body is that, mine. I'm fused very high, T1

and to the sacrum, so the majority of my spine is fused, so sure

there will be some difference between me and others who aren't fused

as high. I have a boat load of hardware, and a weird configuration to

it, and that does limit movement for me. And while I wish I had the

movement that say Kam has, I'm me and the totality of just me, so

while Kam and I both had revision, my surgery was mine, as my

recovery was mine, and while it all falls under revision, it can vary.

>

> So to end this rambling message, know we are there to support you,

whether or not you need pain med's to deal with your post-op pain.

Know recovery rates vary a lot, quite a lot need pain med's for

upwards of a year just from the surgery and the adjustment to your

NEW body stance. You may find that other body parts will revolt to

you being upright, my shoulders and then my elbows gave me fits, some

others find their knees painful. I don't know if you were pushed to

get off your meds the way you did it, or you just wanted off them,

but take it easy on yourself, reducing and allowing your body to

adjust, then reducing some more, allows your body not to have that

awful shock, and for you to build up your strength accordingly,

without the whammo affect. Know that while the pain will reduce for

most of us after surgery, the exhaustion continues for a good long

while. I tired easily at first and while it got progressively better,

it took 18 months for me to feel like I had my old energy level back.

For me the exhaustion was always worse than the pain post op, that

feeling like I'd never be my old self. Thats why we are careful to

let you guys know going into surgery that this is a LONG recovery,

and the more time you get away from surgery you'll realize just how

long it is. You are you, and you can't judge yourself by what another

revisee is doing at the same month level in recovery you are at, it's

apples and oranges. So take it one day at a time, time will always be

your friend, and alas it just takes time!

>

> [ ] Sorry

>

> I am sorry I brought up the whole thing about pain medication. I

was

> only trying to see if somebody could tell me they experienced the

same

> thing, so I would not feel so terrible. Thank you . I

guess I

> was wrong about this group that you can share what is happening

to you,

> I feel worse now, now I feel like I shouldn't have gotten off the

pain

> medication and I feel like I should not have any pain at all.

That I am

> just laying around with pain. thank you for your honesty

and I

> will follow your wisdom.

>

October 26, 2007

,

I did respond privately to our last email.

October 26, 2007

Hi Everyone,

Ok, , I'll chime in. I've been waiting to, trying to find the right words.

For those who don't know me too well, I had my H-Rod surgery in 1977 and my revision surgery with complete removal of the H-Rod and a thoracotomy, rods, screws, cages, and fusion from T-4 to S-1 with Dr. Boachie in Dec.1997, almost 10 years ago. After surgery, I wound up on MS Contin, a morphine derivative, for six months and had no trouble at all slowly weaning off it. I'm now 66 years old. I think I am doing very, very well, but I've been left with probable arachnoiditis, a very messy SI Joint on the right side and a so-so one on the left, scar tissue and a bit of nerve damage. As a result, I walk with a cane because of balance issues due to the nerve damage and I take 5 mg of Methadone twice a day for pain, mostly for pain due to the deteriorating SI joints. Occasionally, I use a cream composed of a combination of drugs including an anti-inflammatory and an anesthetic. The drugs are prescribed by a pain management doc. I've also been helped tremendously by acupressure and cranial-sacral therapy. Now this may sound like one heck of a mess to live with, but instead, this regime has given me a good life style and I am very grateful for the surgery and for my wonderful pain doc and therapist.

What concerned me about 's email about her cutting out Oxycontin cold turkey, is that doing so is, I believe, is contrary to medical advice, for many reasons. Also, regardless of 's intent, the message that came across, to me anyway, was 's belief that being on narcotics at her stage of recovery is wrong. I feared that some members, newbies in particular, would get the impression that stopping cold turkey is the way to go, when clearly, it is not, and that it is wrong to be on narcotic meds at four months post op, which is not true, either. As Cam mentioned, that kind of message could set back the cause of adequate pain control for everyone.

, I am not saying that you should not have written about what you were doing, but for the sake of newbies and others who may not be very knowledgeable about meds, it would have been very helpful to clearly point out that your view, even if it works for you, is not the standard of care. I believe you know that. If weaning off Oxycontin was not working for you, my suggestion would have been to let your doctor know, rather than just deciding your only choice was to go cold turkey. A good doc would have had ideas of how to handle your problems with weaning. The point I am trying to make is, while venting about anything is perfectly acceptable, we each need to keep in mind who our audience is. I think it would have been helpful to mention that while you wanted off Oxy no matter what, there is no rule about when everyone should stop taking heavy duty meds. I don't want anyone to feel guilty about needing meds for pain control at four months post op.

Also, to and everyone else in recovery mode or about to have surgery or even thinking of it, I don't understand why some of you feel the need to rush the recovery period. I certainly understand the desire to be over it all, but you have to give yourselves a break. Look at all the years of pain and aggravation you've spent getting to this point. Put it in perspective: compared to all the years it took to get to this point, what's another few months for more recovery? It takes some folks much, much longer to recover than others. That's ok. You'll get there. And if you need meds to function during recovery, so what? That's what they're there for. Pain cures nothing. You'll likely recover faster if your pain is well controlled during the recovery period.

I haven't been posting much lately, but to all of those who do, please know that I read all your messages and I hope and pray that each of you get what you want out of this journey. It's very hard. I know how you feel. You're in my thoughts.

Bonnie

October 28, 2007

,

I just got back from yet another trip and see that you had a better

day toward the end of last week and I hoped that things have kept up

for you this weekend.

I also hope you talked to your doctor about getting yourself

comfortable again. I hear what you are saying that you maybe felt

too good and did too much before because the meds were masking your

pain a little too well. Perhaps you can find a happy medium...because

usually for most patients moving around a bit really is good

too...just not too fast or too intense...just following whatever

walking goals, or other rehab goals, your doctor gave you.

Don't be too hard on yourself. These are early days in your recovery

and expecting too much too soon will only lead to dissapointment.

Slow and steady winds the race!

Take Care, Cam

November 13, 2007

Bonnie,

Hi, I am glad you are back. I didn't realize you responded to this

message. I am sorry you took the message the wrong why I never said

it was wrong to be on pain medication at 5 months out, that was never

my intent.

All I was trying to do was one find advice and second to see if

anybody was going thru the same thing as I was, I did find some but

we had to email privately because of the way some reacted to the

subject and that is a shame. I never ever said cold turkey is the why

to go I clearly stated I was going against medical advice.

I am sorry you misunderstood the subject matter and I don't think any

newbie is going to think that is the way to go or that they have been

on pain medication for to long.......that is my opinion. I do think

that two people in this group (me included) found each other and now

we don't feel like we are alone. So know I feel good........

Also one more thing I would like to mention that things have changed

when it comes to recovery, I may have come across as I was in a hurry

I am not sure but if I did I am sorry. But like I said things have

changed and my doctor released me of any kind of restrictions and I

am only 6 months out. So its not that I am in a hurry but that My

DOCTOR is excepting me to be more active and I was feeling bad. That

is again me and that is not always the case all of us are different

and our doctors have different views on the recovery process. That is

what is so great we all have a different stories to tell and I was

just telling mine and it would have been nice to have known going

into revision that depression and other things could happen other

then the healing process, so that is what I think.

Sorry if you misunderstood my message

>

> Hi Everyone,

>

> Ok, , I'll chime in. I've been waiting to, trying to find the

right words.

>

> For those who don't know me too well, I had my H-Rod surgery in

1977 and my revision surgery with complete removal of the H-Rod and a

thoracotomy, rods, screws, cages, and fusion from T-4 to S-1 with Dr.

Boachie in Dec.1997, almost 10 years ago. After surgery, I wound up

on MS Contin, a morphine derivative, for six months and had no

trouble at all slowly weaning off it. I'm now 66 years old. I think

I am doing very, very well, but I've been left with probable

arachnoiditis, a very messy SI Joint on the right side and a so-so

one on the left, scar tissue and a bit of nerve damage. As a result,

I walk with a cane because of balance issues due to the nerve damage

and I take 5 mg of Methadone twice a day for pain, mostly for pain

due to the deteriorating SI joints. Occasionally, I use a cream

composed of a combination of drugs including an anti-inflammatory and

an anesthetic. The drugs are prescribed by a pain management doc.

I've also been helped tremendously by acupressure and cranial-sacral

therapy. Now this may sound like one heck of a mess to live with,

but instead, this regime has given me a good life style and I am very

grateful for the surgery and for my wonderful pain doc and

therapist.

>

> What concerned me about 's email about her cutting out

Oxycontin cold turkey, is that doing so is, I believe, is contrary to

medical advice, for many reasons. Also, regardless of 's intent,

the message that came across, to me anyway, was 's belief that

being on narcotics at her stage of recovery is wrong. I feared that

some members, newbies in particular, would get the impression that

stopping cold turkey is the way to go, when clearly, it is not, and

that it is wrong to be on narcotic meds at four months post op, which

is not true, either. As Cam mentioned, that kind of message could

set back the cause of adequate pain control for everyone.

>

> , I am not saying that you should not have written about what

you were doing, but for the sake of newbies and others who may not be

very knowledgeable about meds, it would have been very helpful to

clearly point out that your view, even if it works for you, is not

the standard of care. I believe you know that. If weaning off

Oxycontin was not working for you, my suggestion would have been to

let your doctor know, rather than just deciding your only choice was

to go cold turkey. A good doc would have had ideas of how to handle

your problems with weaning. The point I am trying to make is, while

venting about anything is perfectly acceptable, we each need to keep

in mind who our audience is. I think it would have been helpful to

mention that while you wanted off Oxy no matter what, there is no

rule about when everyone should stop taking heavy duty meds. I don't

want anyone to feel guilty about needing meds for pain control at

four months post op.

>

> Also, to and everyone else in recovery mode or about to have

surgery or even thinking of it, I don't understand why some of you

feel the need to rush the recovery period. I certainly understand

the desire to be over it all, but you have to give yourselves a

break. Look at all the years of pain and aggravation you've spent

getting to this point. Put it in perspective: compared to all the

years it took to get to this point, what's another few months for

more recovery? It takes some folks much, much longer to recover than

others. That's ok. You'll get there. And if you need meds to

function during recovery, so what? That's what they're there for.

Pain cures nothing. You'll likely recover faster if your pain is

well controlled during the recovery period.

>

> I haven't been posting much lately, but to all of those who do,

please know that I read all your messages and I hope and pray that

each of you get what you want out of this journey. It's very hard.

I know how you feel. You're in my thoughts.

>

> Bonnie

>

November 13, 2007

You may know that people who have open heart surgery are very

susceptible to depression. I am very glad to be forewarned that

depression is also a possibility post revision. Anyone who has dealt

with depression before in their life would welcome a heads up so that

they can be prepared.

--

> >

> > Hi Everyone,

> >

> > Ok, , I'll chime in. I've been waiting to, trying to find

the

> right words.

> >

> > For those who don't know me too well, I had my H-Rod surgery in

> 1977 and my revision surgery with complete removal of the H-Rod and

a

> thoracotomy, rods, screws, cages, and fusion from T-4 to S-1 with

Dr.

> Boachie in Dec.1997, almost 10 years ago. After surgery, I wound

up

> on MS Contin, a morphine derivative, for six months and had no

> trouble at all slowly weaning off it. I'm now 66 years old. I

think

> I am doing very, very well, but I've been left with probable

> arachnoiditis, a very messy SI Joint on the right side and a so-so

> one on the left, scar tissue and a bit of nerve damage. As a

result,

> I walk with a cane because of balance issues due to the nerve

damage

> and I take 5 mg of Methadone twice a day for pain, mostly for pain

> due to the deteriorating SI joints. Occasionally, I use a cream

> composed of a combination of drugs including an anti-inflammatory

and

> an anesthetic. The drugs are prescribed by a pain management doc.

> I've also been helped tremendously by acupressure and cranial-

sacral

> therapy. Now this may sound like one heck of a mess to live with,

> but instead, this regime has given me a good life style and I am

very

> grateful for the surgery and for my wonderful pain doc and

> therapist.

> >

> > What concerned me about 's email about her cutting out

> Oxycontin cold turkey, is that doing so is, I believe, is contrary

to

> medical advice, for many reasons. Also, regardless of 's

intent,

> the message that came across, to me anyway, was 's belief that

> being on narcotics at her stage of recovery is wrong. I feared

that

> some members, newbies in particular, would get the impression that

> stopping cold turkey is the way to go, when clearly, it is not, and

> that it is wrong to be on narcotic meds at four months post op,

which

> is not true, either. As Cam mentioned, that kind of message could

> set back the cause of adequate pain control for everyone.

> >

> > , I am not saying that you should not have written about what

> you were doing, but for the sake of newbies and others who may not

be

> very knowledgeable about meds, it would have been very helpful to

> clearly point out that your view, even if it works for you, is not

> the standard of care. I believe you know that. If weaning off

> Oxycontin was not working for you, my suggestion would have been to

> let your doctor know, rather than just deciding your only choice

was

> to go cold turkey. A good doc would have had ideas of how to handle

> your problems with weaning. The point I am trying to make is,

while

> venting about anything is perfectly acceptable, we each need to

keep

> in mind who our audience is. I think it would have been helpful

to

> mention that while you wanted off Oxy no matter what, there is no

> rule about when everyone should stop taking heavy duty meds. I

don't

> want anyone to feel guilty about needing meds for pain control at

> four months post op.

> >

> > Also, to and everyone else in recovery mode or about to have

> surgery or even thinking of it, I don't understand why some of you

> feel the need to rush the recovery period. I certainly understand

> the desire to be over it all, but you have to give yourselves a

> break. Look at all the years of pain and aggravation you've spent

> getting to this point. Put it in perspective: compared to all the

> years it took to get to this point, what's another few months for

> more recovery? It takes some folks much, much longer to recover

than

> others. That's ok. You'll get there. And if you need meds to

> function during recovery, so what? That's what they're there for.

> Pain cures nothing. You'll likely recover faster if your pain is

> well controlled during the recovery period.

> >

> > I haven't been posting much lately, but to all of those who do,

> please know that I read all your messages and I hope and pray that

> each of you get what you want out of this journey. It's very

hard.

> I know how you feel. You're in my thoughts.

> >

> > Bonnie

> >

>

November 13, 2007

Thank you for expressing that

> > >

> > > Hi Everyone,

> > >

> > > Ok, , I'll chime in. I've been waiting to, trying to find

> the

> > right words.

> > >

> > > For those who don't know me too well, I had my H-Rod surgery in

> > 1977 and my revision surgery with complete removal of the H-Rod

and

> a

> > thoracotomy, rods, screws, cages, and fusion from T-4 to S-1 with

> Dr.

> > Boachie in Dec.1997, almost 10 years ago. After surgery, I wound

> up

> > on MS Contin, a morphine derivative, for six months and had no

> > trouble at all slowly weaning off it. I'm now 66 years old. I

> think

> > I am doing very, very well, but I've been left with probable

> > arachnoiditis, a very messy SI Joint on the right side and a so-

so

> > one on the left, scar tissue and a bit of nerve damage. As a

> result,

> > I walk with a cane because of balance issues due to the nerve

> damage

> > and I take 5 mg of Methadone twice a day for pain, mostly for

pain

> > due to the deteriorating SI joints. Occasionally, I use a cream

> > composed of a combination of drugs including an anti-inflammatory

> and

> > an anesthetic. The drugs are prescribed by a pain management

doc.

> > I've also been helped tremendously by acupressure and cranial-

> sacral

> > therapy. Now this may sound like one heck of a mess to live

with,

> > but instead, this regime has given me a good life style and I am

> very

> > grateful for the surgery and for my wonderful pain doc and

> > therapist.

> > >

> > > What concerned me about 's email about her cutting out

> > Oxycontin cold turkey, is that doing so is, I believe, is

contrary

> to

> > medical advice, for many reasons. Also, regardless of 's

> intent,

> > the message that came across, to me anyway, was 's belief

that

> > being on narcotics at her stage of recovery is wrong. I feared

> that

> > some members, newbies in particular, would get the impression

that

> > stopping cold turkey is the way to go, when clearly, it is not,

and

> > that it is wrong to be on narcotic meds at four months post op,

> which

> > is not true, either. As Cam mentioned, that kind of message

could

> > set back the cause of adequate pain control for everyone.

> > >

> > > , I am not saying that you should not have written about

what

> > you were doing, but for the sake of newbies and others who may

not

> be

> > very knowledgeable about meds, it would have been very helpful to

> > clearly point out that your view, even if it works for you, is

not

> > the standard of care. I believe you know that. If weaning off

> > Oxycontin was not working for you, my suggestion would have been

to

> > let your doctor know, rather than just deciding your only choice

> was

> > to go cold turkey. A good doc would have had ideas of how to

handle

> > your problems with weaning. The point I am trying to make is,

> while

> > venting about anything is perfectly acceptable, we each need to

> keep

> > in mind who our audience is. I think it would have been

helpful

> to

> > mention that while you wanted off Oxy no matter what, there is no

> > rule about when everyone should stop taking heavy duty meds. I

> don't

> > want anyone to feel guilty about needing meds for pain control at

> > four months post op.

> > >

> > > Also, to and everyone else in recovery mode or about to

have

> > surgery or even thinking of it, I don't understand why some of

you

> > feel the need to rush the recovery period. I certainly

understand

> > the desire to be over it all, but you have to give yourselves a

> > break. Look at all the years of pain and aggravation you've spent

> > getting to this point. Put it in perspective: compared to all

the

> > years it took to get to this point, what's another few months for

> > more recovery? It takes some folks much, much longer to recover

> than

> > others. That's ok. You'll get there. And if you need meds to

> > function during recovery, so what? That's what they're there

for.

> > Pain cures nothing. You'll likely recover faster if your pain is

> > well controlled during the recovery period.

> > >

> > > I haven't been posting much lately, but to all of those who do,

> > please know that I read all your messages and I hope and pray

that

> > each of you get what you want out of this journey. It's very

> hard.

> > I know how you feel. You're in my thoughts.

> > >

> > > Bonnie

> > >

> >

>

November 13, 2007

I just saw your message