Re: just need to vent

July 27, 2006

Most of what he said is NOt true Weight has nothing to do with it Having the wrong Dr before Is what some of us are dealing with He does not know much about "A" and most of all people Who wants Dr's or friends to be Blunt Blunt is not telling us what to expect what went wrong How it could be corrected OR IF it could be corrected Blunt is NASTY I came away from Blunt people Now I vented

-- RE: Just need to Vent

Carol,

While all of what he said my be true, there are whys to say it with out being so blunt. Although the surgeon that I had was pretty blunt! I liked that because I knew that he wasn’t holding back anything.

Everyone is sensitive to something in their life, whether it be weight, height, or in my case thinning hair at 35 UGH!!! At least he did give you some names of people! But, if you aren’t comfortable with him, don’t go to him. You have to have a good relationship with your surgeon!! They have to know you!! And have some kind of caring bone in their body, while mine was blunt, he was still caring. Hope you find the right doc for you!! It is hard sometimes!! I don’t know if you have looked and read any of the other peoples stories, but it could help you!

Take care and let us know what you decide.

C Warren

Co-Founder

www.achalasia.us

From: achalasia [mailto:achalasia ] On Behalf Of Carol Sent: Thursday, July 27, 2006 4:53 PMAchalasia Subject: Just need to Vent

Hello Everyone,

I am just needing to vent here. I was diagnosed with A the end of 1999 after 3 years of symptoms but being told it was GERD, a stricture, etc. I had big time spasms, but at that time had no idea they were related to A. After reading the little bit there was at that time on the Internet about balloons and botox and such, I opted to go right for the surgery. I was sent to a thoracic surgeon that was recommended by my GI (they are friends of course). I didn't know there was a Lap procedure available to me. I was not told everything about this type of surgery, or else I just don't remember, but it was horrible. Waking up and having all those tubes in me. I didn't know they had to collapse my lung and but drainage tubes in me. But, I did recover quite well and was able to eat fairly normal. That only lasted about 1 month and I started having the sticking again and the spasms. One doctor gave me a prescription for nitro tabs which worked great. I still take them to this day if I have a spasm. Anyway, it took me 2 years of dealing with this and trying to convince my GI doctor that things were still not right. He would just tell me, "You have Achalasia." "Things will never be the same for you." Finally I got him to send me to Mayo Clinic to see what they thought. They seemed to feel I had an incomplete Myotomy and did another one on me (lap this time) what a difference. I felt great and recovered very well from this one and thought things were finally going to be ok. This time I developed a new problem with stuff coming back up at night and choking me. I would aspirate this acid. It scared me half to death and I started having panic attacks due to it. No one seemed to think this was a problem. I dealt with this for another 2 years until I got my GI to do another scope and he discovered I had a stricture from the acid. How and when did that happen as I have been on Nexium since 1996? He dilated it and that seemed to do the trick for about 1 year. I started having the symptoms again so I got another one. This time it lasted about 7 months. The last time it started bothering me again he did another dilatation but now my symptoms were worse than before the dilatation. He did it again 2 months later, but to no avail. He decided to do another barium swallow, a gastric emptying test and a chest CT. These tests showed that my A has gotten progressively worse and I have a big old pouch now. He has said there is nothing more he can do for me and referred me back to the surgeon who did my first M. He basically said the only thing I could do now is have an esophagectomy. Well of course I don't want him to do it, if I do it at all. I have been reading about so many of you on this site that have either had it done, or are facing the possibility also. The one thing different about my situation than everyone else, is that I never lost a lot of weight. Even after the surgery, I have been gaining weight and can't seem to loose it. It is very frustrating. My daughter always tells me if I'm throwing up so much how come I don't loose weight. Anyway, that is my story, but this is what I want to vent about.

I contacted a surgeon in another state about my situation. He basically agreed that this was my only option now, but told me not to have it done thorascopically. He asked me to send him all my records from before and after the M's. I felt pretty good about this so I gather everything up and sent it off to him. I also wrote him a letter about my history and also sent him some copies of letters I had written to some other doctors. I just basically wanted to give him as much info as possible.

Well last Friday, a month after I sent everything to him, he called me. I was really looking forward to what he thought. I was quite shocked. First off he was going on and on about all the stuff I had sent. He couldn't figure out what I wanted. Then he says to me, in a very sarcastic tone, "I think you just don't understand your disease." I don't remember all of the conversation as I was taken aback by his demeanor. He proceeded to explain what A is and I said I know that. I basically wanted to know about the Esophagectomy and if he felt I really did need it or could I live with it. I wanted to know if I lived with it, how much more damage would I be causing my E. He was again sarcastic and asked me why I didn't go back to the Mayo clinic surgeon if I was so unhappy with my surgery? Then he proceeds to ask me my age, how tall I was and how much I weighed. When I told him, he says, "How did you let yourself get so out of control. I wouldn't operate on you at that weight." I have never had a doctor talk to me this way. In the end he gave me some names and phone numbers of people who have had the Ectomy, by him, and told me to call them to see how they are living with it. I guess I need to know from you on the board whether or not you think I was overly sensitive or if you agree that this was uncalled for behavior from him?

I want to add that I think you are all such wonderful people and so supportive of each other. I can't always read all of the posts as there are so many. Sorry this is so long.

Blessings to you all

Carol in Colorado

__________________________________________________

July 27, 2006

Ed, Guess you misunderstood. He did tell me to call them. But I still think he was rude. I won't use him. I may call those people though because I need to know how others are coping with it. Thank you. Carol in Colorado

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

July 27, 2006

Hi Carol,

I think we all know to well how much hell it is to have to put up

with DR's like that I had one once He didn't know what to do with me

at one point he had me on 40mg of nexium 3 times daily when that

didn't help he looked at me and said well I don't know what to do

with you I suggest we put in a feeding tube. Ya like that's going to

solve it alot of DR. don't understand all of the aspects of " A " we

are all different and unique and I have learned size or shape

doesn't matter it still sucks to have to live with this day in and

day out. Don't dispare and certianly don't give up searching the

right GI DR. is out there sometimes it just takes some searching to

find them. I know having to drive can be scary but I for one have

decided that if I need my " E " removed I will travel to find the best

I won't let some buthead have my life in their hands. Good luck to

you

Tamara in Utah

>

> Hello Everyone,

>

> I am just needing to vent here. I was diagnosed with A the end

of 1999 after 3 years of symptoms but being told it was GERD, a

stricture, etc. I had big time spasms, but at that time had no idea

they were related to A. After reading the little bit there was at

that time on the Internet about balloons and botox and such, I opted

to go right for the surgery. I was sent to a thoracic surgeon that

was recommended by my GI (they are friends of course). I didn't

know there was a Lap procedure available to me. I was not told

everything about this type of surgery, or else I just don't

remember, but it was horrible. Waking up and having all those tubes

in me. I didn't know they had to collapse my lung and but drainage

tubes in me. But, I did recover quite well and was able to eat

fairly normal. That only lasted about 1 month and I started having

the sticking again and the spasms. One doctor gave me a

prescription for nitro tabs which worked great. I still take them to

> this day if I have a spasm. Anyway, it took me 2 years of

dealing with this and trying to convince my GI doctor that things

were still not right. He would just tell me, " You have

Achalasia. " " Things will never be the same for you. " Finally I got

him to send me to Mayo Clinic to see what they thought. They seemed

to feel I had an incomplete Myotomy and did another one on me (lap

this time) what a difference. I felt great and recovered very well

from this one and thought things were finally going to be ok. This

time I developed a new problem with stuff coming back up at night

and choking me. I would aspirate this acid. It scared me half to

death and I started having panic attacks due to it. No one seemed

to think this was a problem. I dealt with this for another 2 years

until I got my GI to do another scope and he discovered I had a

stricture from the acid. How and when did that happen as I have

been on Nexium since 1996? He dilated it and that seemed to do the

> trick for about 1 year. I started having the symptoms again so I

got another one. This time it lasted about 7 months. The last time

it started bothering me again he did another dilatation but now my

symptoms were worse than before the dilatation. He did it again 2

months later, but to no avail. He decided to do another barium

swallow, a gastric emptying test and a chest CT. These tests showed

that my A has gotten progressively worse and I have a big old pouch

now. He has said there is nothing more he can do for me and

referred me back to the surgeon who did my first M. He basically

said the only thing I could do now is have an esophagectomy. Well

of course I don't want him to do it, if I do it at all. I have been

reading about so many of you on this site that have either had it

done, or are facing the possibility also. The one thing different

about my situation than everyone else, is that I never lost a lot of

weight. Even after the surgery, I have been gaining

> weight and can't seem to loose it. It is very frustrating. My

daughter always tells me if I'm throwing up so much how come I don't

loose weight. Anyway, that is my story, but this is what I want to

vent about.

>

> I contacted a surgeon in another state about my situation. He

basically agreed that this was my only option now, but told me not

to have it done thorascopically. He asked me to send him all my

records from before and after the M's. I felt pretty good about

this so I gather everything up and sent it off to him. I also wrote

him a letter about my history and also sent him some copies of

letters I had written to some other doctors. I just basically

wanted to give him as much info as possible.

>

> Well last Friday, a month after I sent everything to him, he

called me. I was really looking forward to what he thought. I was

quite shocked. First off he was going on and on about all the stuff

I had sent. He couldn't figure out what I wanted. Then he says to

me, in a very sarcastic tone, " I think you just don't understand

your disease. " I don't remember all of the conversation as I was

taken aback by his demeanor. He proceeded to explain what A is and

I said I know that. I basically wanted to know about the

Esophagectomy and if he felt I really did need it or could I live

with it. I wanted to know if I lived with it, how much more damage

would I be causing my E. He was again sarcastic and asked me why I

didn't go back to the Mayo clinic surgeon if I was so unhappy with

my surgery? Then he proceeds to ask me my age, how tall I was and

how much I weighed. When I told him, he says, " How did you let

yourself get so out of control. I wouldn't operate on you at

> that weight. " I have never had a doctor talk to me this way. In

the end he gave me some names and phone numbers of people who have

had the Ectomy, by him, and told me to call them to see how they are

living with it. I guess I need to know from you on the board

whether or not you think I was overly sensitive or if you agree that

this was uncalled for behavior from him?

>

> I want to add that I think you are all such wonderful people and

so supportive of each other. I can't always read all of the posts

as there are so many. Sorry this is so long.

>

> Blessings to you all

>

> Carol in Colorado

>

> __________________________________________________

>

September 22, 2006

Cynmark24@... wrote: Hi Carol, I just read over your post again from July 27th. While your experience is far worse than mine, there are enough similarities that you might be interested in what I present to the Board in the next few days. In case I forget to copy you, it will be under my name () and email name (Cynmark24). It has to do with my recent search for alternatives to an esophagectomy, and what I found. I have had A for 24 years, an open Heller in 1991, and presently a bucket esophagus that needs

removal. There will be substance in my post. I would like to hear back from you as to the names of the surgeons & GIs you saw and spoke to on the phone. It gives us all much more perspective. In a message dated 7/27/2006 4:59:46 P.M. Eastern Standard Time, pestnsassy@... writes: Hello

Everyone, I am just needing to vent here. I was diagnosed with A the end of 1999 after 3 years of symptoms but being told it was GERD, a stricture, etc. I had big time spasms, but at that time had no idea they were related to A. After reading the little bit there was at that time on the Internet about balloons and botox and such, I opted to go right for the surgery. I was sent to a thoracic surgeon that was recommended by my GI (they are friends of course). I didn't know there was a Lap procedure available to me. I was not told everything about this type of surgery, or else I just don't remember, but it was horrible. Waking up and having all those tubes in me. I didn't know they had to collapse my lung and but drainage tubes in me. But, I did recover quite well and was able to eat fairly normal. That only lasted about 1

month and I started having the sticking again and the spasms. One doctor gave me a prescription for nitro tabs which worked great. I still take them to this day if I have a spasm. Anyway, it took me 2 years of dealing with this and trying to convince my GI doctor that things were still not right. He would just tell me, "You have Achalasia." "Things will never be the same for you." Finally I got him to send me to Mayo Clinic to see what they thought. They seemed to feel I had an incomplete Myotomy and did another one on me (lap this time) what a difference. I felt great and recovered very well from this one and thought things were finally going to be ok. This time I developed a new problem with stuff coming back up at night and choking me. I would aspirate this acid. It scared me half to death and I started having panic attacks due to it. No one seemed to think this was a problem. I dealt

with this for another 2 years until I got my GI to do another scope and he discovered I had a stricture from the acid. How and when did that happen as I have been on Nexium since 1996? He dilated it and that seemed to do the trick for about 1 year. I started having the symptoms again so I got another one. This time it lasted about 7 months. The last time it started bothering me again he did another dilatation but now my symptoms were worse than before the dilatation. He did it again 2 months later, but to no avail. He decided to do another barium swallow, a gastric emptying test and a chest CT. These tests showed that my A has gotten progressively worse and I have a big old pouch now. He has said there is nothing more he can do for me and referred me back to the surgeon who did my first M. He basically said the only thing I could do now is have an esophagectomy. Well of course I

don't want him to do it, if I do it at all. I have been reading about so many of you on this site that have either had it done, or are facing the possibility also. The one thing different about my situation than everyone else, is that I never lost a lot of weight. Even after the surgery, I have been gaining weight and can't seem to loose it. It is very frustrating. My daughter always tells me if I'm throwing up so much how come I don't loose weight. Anyway, that is my story, but this is what I want to vent about. I contacted a surgeon in another state about my situation. He basically agreed that this was my only option now, but told me not to have it done thorascopically. He asked me to send him all my records from before and after the M's. I felt pretty good about this so I gather everything up and sent it off to

him. I also wrote him a letter about my history and also sent him some copies of letters I had written to some other doctors. I just basically wanted to give him as much info as possible. Well last Friday, a month after I sent everything to him, he called me. I was really looking forward to what he thought. I was quite shocked. First off he was going on and on about all the stuff I had sent. He couldn't figure out what I wanted. Then he says to me, in a very sarcastic tone, "I think you just don't understand your disease." I don't remember all of the conversation as I was taken aback by his demeanor. He proceeded to explain what A is and I said I know that. I basically wanted to know about the Esophagectomy and if he felt I really did need it or could I live with it. I wanted to know if I lived with

it, how much more damage would I be causing my E. He was again sarcastic and asked me why I didn't go back to the Mayo clinic surgeon if I was so unhappy with my surgery? Then he proceeds to ask me my age, how tall I was and how much I weighed. When I told him, he says, "How did you let yourself get so out of control. I wouldn't operate on you at that weight." I have never had a doctor talk to me this way. In the end he gave me some names and phone numbers of people who have had the Ectomy, by him, and told me to call them to see how they are living with it. I guess I need to know from you on the board whether or not you think I was overly sensitive or if you agree that this was uncalled for behavior from him? I want to add that I think you are all such wonderful people and so supportive of each other. I can't always read

all of the posts as there are so many. Sorry this is so long. Blessings to you all Carol in Colorado .

All-new - Fire up a more powerful email and get things done faster.

February 23, 2007

I want to thank you for sharing your experience. My daughter is only 4.5 years old and I haven't thought about presentation...although I probably should start thinking about it. Anyway, I hadn't even thought about excusing my daughter so the kids could answer freely....thank you for the excellent point.

Did have a reaction to the presentation? MarcyAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

February 23, 2007

Wow Kathy! You certainly didn't over react! I think I would be at the school demanding an answer of the principal. How rude and inconsiderant all those adults were to you and to . You should have had the opportunity to excuse from the presentation. This year, I did exclude Faith when I talked to the class (2nd grade). I wanted the kids to be able to ask anything and did not want Faith subjected to what could be some difficult questions. How will you ever know how felt?

I'm sorry you've had such a terrible experience, but you are right and they are definately wrong.

ette

-------------- Original message from "Kathy" <kebis@...>: --------------

I'm upset and can't seem to shake it so thought I would bring it to my understanding groups.

is in 3rd grade, 1/2 day in the typical classroom and 1/2 day in the SE classroom. There is a girl in her class who has a sister with DS in 5th grade. The mother of these girls, who I AM friendly with, put together a presentation on DS for her daughter's 5th grade class. She then emailed the 3rd grade teacher, and CCed me that she'd like to present it in the 3rd grade classroom since her typical daughter was in that class, and I assume because was in that class. She and I emailed back and forth about a few ideas which was the last I heard about it.

Much to my surprise (shock is more like it!) yesterday comes home in 's backpack the handout from the presentation. Not one person, not this mom, not the SE teacher, typical teacher, principal, case worker nor 's aid thought to let me know that this presentation was going to take place so that I could prepare for it or choose to be there for it. Truly I could cry thinking about it. Irrationally I feel like I let down. Here's the email I fired off this morning to most of the above people but have not had any response to yet:

Hi X, Y and Z, I understand that XXX gave a presentation in 's class yesterday on Down sydrome. On the one hand, I think that's wonderful and I applaud X's efforts. On the other, although I was told that it was going to happen at some point, last I heard (the typical teacher) hadn't even looked at the presentation or given X any feedback on it's appropriateness for third graders. It amazes me that no one thought to tell me when it was going to happen. I would have liked to prepare for it and to be there in the classroom when it took place. I am both angry and deeply disappointed that I wasn't able to do either of those things.

Kathy Beckett

So tell me the truth - would you feel like I do or am I over reacting? Anything I'm missing?

Thanks,

Kathy

February 23, 2007

I guess, at this point, I feel differently about excluding my kids from any possible presentations. We have not done any "formal" presentations with my son's peer--he is almost 9 and in 3rd grade. He's been with the same group of peers since he was 3 and in K--we are also from a very small/rural area--there are 41 kids in his entire 3rd grade class so they all know him. They know he is "different' and frequently in the past have asked questions--mainly why doesn't he talk right? :-) And the teachers and I have answered openly and honestly and have used the terms Ds, but we have not done any formal presentation on the subject. Most of the questions are very far and few between anymore--they know him and accept him as is. When the need arises or I'm asked I would welcome the opportunity. However, at this point, I would want Mac there. I'm talking about HIM and he needs to be aware of his strengths (of which he has many), weaknesses and what his disability is as well as able to join in the discussion about him--if needed/wanted/appropriate. I think to not have him there would almost make the kids think there is something really wrong or that I'm hiding something from Mac. Ultimately I want Mac to be his own best advocate--not me, not another family member, not a paid provider, but him. He needs to start now knowing HIMSELF and that he has Ds and that that is just a small part of who he is, but it is a part and he should be proud of that part of him. Perhaps the kids may feel uncomfortable asking questions in front of him and if that would be the case I may leave a "question jar"--where they could write their question down privately and have them answered later either privately or as a group but anonymously.

Just my thoughts at the moment.

Jill

Mom to Mac (almost 9, 3rd grade, Ds) and Kit (5.5 yrs., preschool, Ds)

Re: Just need to vent

Wow Kathy! You certainly didn't over react! I think I would be at the school demanding an answer of the principal. How rude and inconsiderant all those adults were to you and to . You should have had the opportunity to excuse from the presentation. This year, I did exclude Faith when I talked to the class (2nd grade). I wanted the kids to be able to ask anything and did not want Faith subjected to what could be some difficult questions. How will you ever know how felt?

I'm sorry you've had such a terrible experience, but you are right and they are definately wrong.

ette

-------------- Original message from "Kathy" <kebiscomcast (DOT) net>: --------------

I'm upset and can't seem to shake it so thought I would bring it to my understanding groups.

is in 3rd grade, 1/2 day in the typical classroom and 1/2 day in the SE classroom. There is a girl in her class who has a sister with DS in 5th grade. The mother of these girls, who I AM friendly with, put together a presentation on DS for her daughter's 5th grade class. She then emailed the 3rd grade teacher, and CCed me that she'd like to present it in the 3rd grade classroom since her typical daughter was in that class, and I assume because was in that class. She and I emailed back and forth about a few ideas which was the last I heard about it.

Much to my surprise (shock is more like it!) yesterday comes home in 's backpack the handout from the presentation. Not one person, not this mom, not the SE teacher, typical teacher, principal, case worker nor 's aid thought to let me know that this presentation was going to take place so that I could prepare for it or choose to be there for it. Truly I could cry thinking about it. Irrationally I feel like I let down. Here's the email I fired off this morning to most of the above people but have not had any response to yet:

Hi X, Y and Z, I understand that XXX gave a presentation in 's class yesterday on Down sydrome. On the one hand, I think that's wonderful and I applaud X's efforts. On the other, although I was told that it was going to happen at some point, last I heard (the typical teacher) hadn't even looked at the presentation or given X any feedback on it's appropriateness for third graders. It amazes me that no one thought to tell me when it was going to happen. I would have liked to prepare for it and to be there in the classroom when it took place. I am both angry and deeply disappointed that I wasn't able to do either of those things.

Kathy Beckett

So tell me the truth - would you feel like I do or am I over reacting? Anything I'm missing?

Thanks,

Kathy

February 23, 2007

did not have a reaction to the presentation in front of me anyway. I asked her if that mom was there and she said yes and I asked her if the older daughter was there and she said yes but when I asked what they talked about and also when I asked if there was anything special about the girl wouldn't say anything so who knows what she was thinking.

Kathy

Re: Just need to vent

I want to thank you for sharing your experience. My daughter is only 4.5 years old and I haven't thought about presentation...although I probably should start thinking about it. Anyway, I hadn't even thought about excusing my daughter so the kids could answer freely....thank you for the excellent point.

Did have a reaction to the presentation? Marcy

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

February 23, 2007

hi, kathy, I have been there, related to deafness awareness, smile. im sure that mother meant well, but again it is all her ideas and it was her presentation. it is rotten to be left out...but oh, well. maybe you can participate the ds awareness next time? Make sure the staff aware of that. hang in there, mom.. kkKathy <kebis@...> wrote: I'm upset and can't seem to shake it so thought I would

bring it to my understanding groups. is in 3rd grade, 1/2 day in the typical classroom and 1/2 day in the SE classroom. There is a girl in her class who has a sister with DS in 5th grade. The mother of these girls, who I AM friendly with, put together a presentation on DS for her daughter's 5th grade class. She then emailed the 3rd grade teacher, and CCed me that she'd like to present it in the 3rd grade classroom since her typical daughter was in that class, and I assume because was in that class. She and I emailed back and forth about a few ideas which was the last I heard about it. Much to my surprise (shock is more like it!) yesterday comes home in 's backpack the handout from the presentation. Not one person, not this mom, not the SE teacher, typical teacher, principal, case worker nor 's aid thought to let me

know that this presentation was going to take place so that I could prepare for it or choose to be there for it. Truly I could cry thinking about it. Irrationally I feel like I let down. Here's the email I fired off this morning to most of the above people but have not had any response to yet: Hi X, Y and Z, I understand that XXX gave a presentation in 's class yesterday on Down sydrome. On the one hand, I think that's wonderful and I applaud X's efforts. On the other, although I was told that it was going to happen at some point, last I heard (the typical teacher) hadn't even looked at the presentation or given X any feedback on it's appropriateness for third graders. It amazes me that no one thought to tell me when it was going to happen. I would have liked to

prepare for it and to be there in the classroom when it took place. I am both angry and deeply disappointed that I wasn't able to do either of those things. Kathy Beckett So tell me the truth - would you feel like I do or am I over reacting? Anything I'm missing? Thanks, Kathy

February 23, 2007

Yes, I agree, she had good intentions and it is rotten to be left out.

Thanks!

Kathy

Re: Just need to vent

hi, kathy,

I have been there, related to deafness awareness, smile. im sure that mother meant well, but again it is all her ideas and it was her presentation. it is rotten to be left out...but oh, well. maybe you can participate the ds awareness next time? Make sure the staff aware of that. hang in there, mom.. kkKathy <kebiscomcast (DOT) net> wrote:

I'm upset and can't seem to shake it so thought I would bring it to my understanding groups.

is in 3rd grade, 1/2 day in the typical classroom and 1/2 day in the SE classroom. There is a girl in her class who has a sister with DS in 5th grade. The mother of these girls, who I AM friendly with, put together a presentation on DS for her daughter's 5th grade class. She then emailed the 3rd grade teacher, and CCed me that she'd like to present it in the 3rd grade classroom since her typical daughter was in that class, and I assume because was in that class. She and I emailed back and forth about a few ideas which was the last I heard about it.

Much to my surprise (shock is more like it!) yesterday comes home in 's backpack the handout from the presentation. Not one person, not this mom, not the SE teacher, typical teacher, principal, case worker nor 's aid thought to let me know that this presentation was going to take place so that I could prepare for it or choose to be there for it. Truly I could cry thinking about it. Irrationally I feel like I let down. Here's the email I fired off this morning to most of the above people but have not had any response to yet:

Hi X, Y and Z, I understand that XXX gave a presentation in 's class yesterday on Down sydrome. On the one hand, I think that's wonderful and I applaud X's efforts. On the other, although I was told that it was going to happen at some point, last I heard (the typical teacher) hadn't even looked at the presentation or given X any feedback on it's appropriateness for third graders. It amazes me that no one thought to tell me when it was going to happen. I would have liked to prepare for it and to be there in the classroom when it took place. I am both angry and deeply disappointed that I wasn't able to do either of those things.

Kathy Beckett

So tell me the truth - would you feel like I do or am I over reacting? Anything I'm missing?

Thanks,

Kathy

February 23, 2007

im sorry i misunderstood...you meant that ur child was involved in the presentation without your awareness that it happened without any prepareness... again it is rotten... i cannot speak for her, cuz, it is the mom, not a person with disability. The school should send you a paper to sign that you approve or do not approve for your child to be in the presentation. period. KATHLEEN TRIPP <ktripp99@...> wrote: hi, kathy, I have been there, related to deafness awareness, smile. im sure that mother meant well, but again it is all her ideas and it was her presentation. it is rotten to be left out...but oh, well. maybe you can participate the ds awareness next time? Make sure the staff aware of that. hang in there, mom.. kkKathy <kebiscomcast (DOT) net> wrote: I'm upset and can't seem to shake it so thought I would bring it to my understanding groups. is in 3rd grade, 1/2 day in the typical classroom and 1/2 day in the SE classroom. There is a girl in her class who has a sister with DS in 5th grade. The mother of these girls, who I AM friendly with, put together a presentation on DS for

her daughter's 5th grade class. She then emailed the 3rd grade teacher, and CCed me that she'd like to present it in the 3rd grade classroom since her typical daughter was in that class, and I assume because was in that class. She and I emailed back and forth about a few ideas which was the last I heard about it. Much to my surprise (shock is more like it!) yesterday comes home in 's backpack the handout from the presentation. Not one person, not this mom, not the SE teacher, typical teacher, principal, case worker nor 's aid thought to let me know that this presentation was going to take place so that I could prepare for it or choose to be there for it. Truly I could cry thinking about it. Irrationally I feel like I let down. Here's the email I fired off this morning to most of the above people but have not had any response to yet: Hi X, Y and Z, I understand that XXX gave a presentation in 's class yesterday on Down sydrome. On the one hand, I think that's wonderful and I applaud X's efforts. On the other, although I was told that it was going to happen at some point, last I heard (the typical teacher) hadn't even looked at the presentation or given X any feedback on it's appropriateness for third graders. It amazes me that no one thought to tell me when it was going to happen. I would have liked to prepare for it and to be there in the classroom when it took place. I am both angry and deeply disappointed that I wasn't able to do either of those things. Kathy Beckett So tell me the truth - would you feel like I do or am I over reacting? Anything I'm missing? Thanks, Kathy

July 6, 2007

I am so sorry that you could not get your epidural.. I hope your doctors

can help to find you a better way to deal with the pain..

Hugs, Babs

December 16, 2008

Hi ,

I'm sorry to hear you are having so much pain today. I

know how hard it is to have to care for little ones

when you hurt.I've had six back surgeries, my first at

the age of 16 and I've been dealing with this for 15

years now. I did have a few good years in between my

fist two disc surgeies and after my first fusion, but

that didn't last as the bone never fused, it was the

screws holding me together that kept my pain away. I

have three children and have had to deal with the pain

and at times agony while trying to care for them.

First, try to stay on top of your exercizes. If you

have weight to lose in your abdomen especially, try to

work on that...It WILL help! Don't smoke as that

exacerbates back problems and will continue the

degeneration process.

Try to find some time to be alone for even a few

minutes and so some deep breathing and try to focus on

the breathing. Tune into your body and try to tune out

the pain. I know it's not a cure all, but what else

can you do?

As far as what could cause the sudden onset of pain,

it sounds as though you have herniated a disk, L5S1 to

be exact. If you can arrange for it, try to get

someone to help you at home so you can lie down as

much as possible. If you can get to PT and A

chiropractor, they may be able to help ease that disk

back into place if done early on.

Don't pick up your daughter!!! Get down on the floor

and let her clinb into your lap. Feed her on the floor

and everything. No laundry or cleaning right now. Let

the house go to pot if you have to. Rest your back and

see if you can get to PT and a chiro.

---

--- <nessa1880@...> wrote:

> I was diagnosed with bilateral pars defect a few

> months ago. I did

> physical therapy for 6 weeks which helped. I stopped

> therapy a few

> weeks ago and did good the first 2 weeks being

> consistent with my

> exercises. Then the holidays came and everything and

> I've really

> slacked off. The pain started here and there but not

> severe enough

> that I needed to take my pain killers. Then on

> Saturday I woke up

> with the sillyest sypmtoms. My left big toe was

> numb. It was like

> that all day Saturday and Sunday. It was the

> weirdest thing. Then

> last night I started getting back pain and

> stiffness. I figured once

> I got out of bed and walked it off I would feel

> better. Well that was

> not the case. I slowly got out of bed and tried to

> pick up my 2 year

> old and that almost took me to my knees. I'm only 24

> years old and I

> feel so horrible when I can't even pick up my

> daughter. The pain

> stayed all day long. By 10am I decided to take a

> pain killer and

> within 1 1/2 hours I needed another. Then by mid

> afternoon another

> and then right now I took another pill. What in the

> world could cause

> such a sudden onset of pain? I couldn't even give my

> daugheter a bath

> today and I just wanted to cry. I did manage to take

> a shower but

> with some pain while bending to wash my legs. My

> boyfriend says it's

> probably because I haven't been doing my exercises

> and I " m sure that

> has something to do with it. I guess I just hate the

> fact that I am

> only 24 and this is something I'm going to have to

> deal with for the

> rest of my life. I'm literally dreading going to bed

> right now cause

> I know I'll wake up in a few hours in pain and with

> stiffness. I

> dread what it will feel like in the morning. I hope

> it goes away just

> as fast as it came.

>

> Sorry for randomly posting. I just didn't have

> anywhere else to post

> and needed to talk to people who understand what

> it's like to have a

> back problem.

>

> Thank you,

>

December 16, 2008

I had a history of sciatica pain and last January started a diet and exercise

program and quickly lost 35 lbs. My pain went away and I thought I cured myself.

At this point I was working out 5-6 times a week with weights and low impact

exercise. I saw am old lady jogging and thought if she could to it so could I.

Little did I know at the time that the running wore away at what little disk I

had and the sciatica came back with a vengence. The doctor said the running is

the worst thing you can do.

Thanks!

Rhonda

On Dec 16, 2008, at 3:58 AM, " " <nessa1880@...> wrote:

I was diagnosed with bilateral pars defect a few months ago. I did

physical therapy for 6 weeks which helped. I stopped therapy a few

weeks ago and did good the first 2 weeks being consistent with my

exercises. Then the holidays came and everything and I've really

slacked off. The pain started here and there but not severe enough

that I needed to take my pain killers. Then on Saturday I woke up

with the sillyest sypmtoms. My left big toe was numb. It was like

that all day Saturday and Sunday. It was the weirdest thing. Then

last night I started getting back pain and stiffness. I figured once

I got out of bed and walked it off I would feel better. Well that was

not the case. I slowly got out of bed and tried to pick up my 2 year

old and that almost took me to my knees. I'm only 24 years old and I

feel so horrible when I can't even pick up my daughter. The pain

stayed all day long. By 10am I decided to take a pain killer and

within 1 1/2 hours I needed another. Then by mid afternoon another

and then right now I took another pill. What in the world could cause

such a sudden onset of pain? I couldn't even give my daugheter a bath

today and I just wanted to cry. I did manage to take a shower but

with some pain while bending to wash my legs. My boyfriend says it's

probably because I haven't been doing my exercises and I " m sure that

has something to do with it. I guess I just hate the fact that I am

only 24 and this is something I'm going to have to deal with for the

rest of my life. I'm literally dreading going to bed right now cause

I know I'll wake up in a few hours in pain and with stiffness. I

dread what it will feel like in the morning. I hope it goes away just

as fast as it came.

Sorry for randomly posting. I just didn't have anywhere else to post

and needed to talk to people who understand what it's like to have a

back problem.

Thank you,

December 16, 2008

I worry when you say your spine didn't fuse. I know smoking and ibuprofin like

Advil are no-no's do you know of any other supplements that are bad?

Thanks!

Rhonda

On Dec 16, 2008, at 8:36 AM, Babbitt <tpowell1977@...> wrote:

Hi ,

I'm sorry to hear you are having so much pain today. I

know how hard it is to have to care for little ones

when you hurt.I've had six back surgeries, my first at

the age of 16 and I've been dealing with this for 15

years now. I did have a few good years in between my

fist two disc surgeies and after my first fusion, but

that didn't last as the bone never fused, it was the

screws holding me together that kept my pain away. I

have three children and have had to deal with the pain

and at times agony while trying to care for them.

First, try to stay on top of your exercizes. If you

have weight to lose in your abdomen especially, try to

work on that...It WILL help! Don't smoke as that

exacerbates back problems and will continue the

degeneration process.

Try to find some time to be alone for even a few

minutes and so some deep breathing and try to focus on

the breathing. Tune into your body and try to tune out

the pain. I know it's not a cure all, but what else

can you do?

As far as what could cause the sudden onset of pain,

it sounds as though you have herniated a disk, L5S1 to

be exact. If you can arrange for it, try to get

someone to help you at home so you can lie down as

much as possible. If you can get to PT and A

chiropractor, they may be able to help ease that disk

back into place if done early on.

Don't pick up your daughter!!! Get down on the floor

and let her clinb into your lap. Feed her on the floor

and everything. No laundry or cleaning right now. Let

the house go to pot if you have to. Rest your back and

see if you can get to PT and a chiro.

---

--- <nessa1880@...> wrote:

> I was diagnosed with bilateral pars defect a few

> months ago. I did

> physical therapy for 6 weeks which helped. I stopped

> therapy a few

> weeks ago and did good the first 2 weeks being

> consistent with my

> exercises. Then the holidays came and everything and

> I've really

> slacked off. The pain started here and there but not

> severe enough

> that I needed to take my pain killers. Then on

> Saturday I woke up

> with the sillyest sypmtoms. My left big toe was

> numb. It was like

> that all day Saturday and Sunday. It was the

> weirdest thing. Then

> last night I started getting back pain and

> stiffness. I figured once

> I got out of bed and walked it off I would feel

> better. Well that was

> not the case. I slowly got out of bed and tried to

> pick up my 2 year

> old and that almost took me to my knees. I'm only 24

> years old and I

> feel so horrible when I can't even pick up my

> daughter. The pain

> stayed all day long. By 10am I decided to take a

> pain killer and

> within 1 1/2 hours I needed another. Then by mid

> afternoon another

> and then right now I took another pill. What in the

> world could cause

> such a sudden onset of pain? I couldn't even give my

> daugheter a bath

> today and I just wanted to cry. I did manage to take

> a shower but

> with some pain while bending to wash my legs. My

> boyfriend says it's

> probably because I haven't been doing my exercises

> and I " m sure that

> has something to do with it. I guess I just hate the

> fact that I am

> only 24 and this is something I'm going to have to

> deal with for the

> rest of my life. I'm literally dreading going to bed

> right now cause

> I know I'll wake up in a few hours in pain and with

> stiffness. I

> dread what it will feel like in the morning. I hope

> it goes away just

> as fast as it came.

>

> Sorry for randomly posting. I just didn't have

> anywhere else to post

> and needed to talk to people who understand what

> it's like to have a

> back problem.

>

> Thank you,

>

28c2a; font-size: 100%; line-height: 122%; } #ygrp-sponsor .ad a{

text-decoration: none; } #ygrp-sponsor .ad a:hover{ text-decoration: underline;

} #ygrp-sponsor .ad p{ margin: 0; } o{font-size: 0; } .MsoNormal{ margin: 0 0 0

0; } #ygrp-text tt{ font-size: 120%; } blockquote{margin: 0 0 0 4px;}

..replbq{margin:4} --> >

December 16, 2008

Nope, these are the only things I'm aware of. I

believe it was a procedural/technique error that kept

my spine from fusing, The young surgeon tried a new

technique for fusion that involved the use of facet

screws instead of the good old standby pedicle screws.

I healed quickly, but the fusion did not become stable

and eventually broke apart...ironically it was while I

was on the treadmill when my screws broke and sent

numbness and pain down my legs.

---

--- Rhonda <loangoddess1961@...> wrote:

> I worry when you say your spine didn't fuse. I know

> smoking and ibuprofin like Advil are no-no's do you

> know of any other supplements that are bad?

>

> Thanks!

> Rhonda

>

> On Dec 16, 2008, at 8:36 AM, Babbitt

> <tpowell1977@...> wrote:

>

> Hi ,

>

> I'm sorry to hear you are having so much pain today.

> I

> know how hard it is to have to care for little ones

> when you hurt.I've had six back surgeries, my first

> at

> the age of 16 and I've been dealing with this for 15

> years now. I did have a few good years in between my

> fist two disc surgeies and after my first fusion,

> but

> that didn't last as the bone never fused, it was the

> screws holding me together that kept my pain away. I

> have three children and have had to deal with the

> pain

> and at times agony while trying to care for them.

>

> First, try to stay on top of your exercizes. If you

> have weight to lose in your abdomen especially, try

> to

> work on that...It WILL help! Don't smoke as that

> exacerbates back problems and will continue the

> degeneration process.

>

> Try to find some time to be alone for even a few

> minutes and so some deep breathing and try to focus

> on

> the breathing. Tune into your body and try to tune

> out

> the pain. I know it's not a cure all, but what else

> can you do?

>

> As far as what could cause the sudden onset of pain,

> it sounds as though you have herniated a disk, L5S1

> to

> be exact. If you can arrange for it, try to get

> someone to help you at home so you can lie down as

> much as possible. If you can get to PT and A

> chiropractor, they may be able to help ease that

> disk

> back into place if done early on.

>

> Don't pick up your daughter!!! Get down on the floor

> and let her clinb into your lap. Feed her on the

> floor

> and everything. No laundry or cleaning right now.

> Let

> the house go to pot if you have to. Rest your back

> and

> see if you can get to PT and a chiro.

> ---

> --- <nessa1880@...> wrote:

>

> > I was diagnosed with bilateral pars defect a few

> > months ago. I did

> > physical therapy for 6 weeks which helped. I

> stopped

> > therapy a few

> > weeks ago and did good the first 2 weeks being

> > consistent with my

> > exercises. Then the holidays came and everything

> and

> > I've really

> > slacked off. The pain started here and there but

> not

> > severe enough

> > that I needed to take my pain killers. Then on

> > Saturday I woke up

> > with the sillyest sypmtoms. My left big toe was

> > numb. It was like

> > that all day Saturday and Sunday. It was the

> > weirdest thing. Then

> > last night I started getting back pain and

> > stiffness. I figured once

> > I got out of bed and walked it off I would feel

> > better. Well that was

> > not the case. I slowly got out of bed and tried to

> > pick up my 2 year

> > old and that almost took me to my knees. I'm only

> 24

> > years old and I

> > feel so horrible when I can't even pick up my

> > daughter. The pain

> > stayed all day long. By 10am I decided to take a

> > pain killer and

> > within 1 1/2 hours I needed another. Then by mid

> > afternoon another

> > and then right now I took another pill. What in

> the

> > world could cause

> > such a sudden onset of pain? I couldn't even give

> my

> > daugheter a bath

> > today and I just wanted to cry. I did manage to

> take

> > a shower but

> > with some pain while bending to wash my legs. My

> > boyfriend says it's

> > probably because I haven't been doing my exercises

> > and I " m sure that

> > has something to do with it. I guess I just hate

> the

> > fact that I am

> > only 24 and this is something I'm going to have to

> > deal with for the

> > rest of my life. I'm literally dreading going to

> bed

> > right now cause

> > I know I'll wake up in a few hours in pain and

> with

> > stiffness. I

> > dread what it will feel like in the morning. I

> hope

> > it goes away just

> > as fast as it came.

> >

> > Sorry for randomly posting. I just didn't have

> > anywhere else to post

> > and needed to talk to people who understand what

> > it's like to have a

> > back problem.

> >

> > Thank you,

> >

>

> 28c2a; font-size: 100%; line-height: 122%; }

> #ygrp-sponsor .ad a{ text-decoration: none; }

> #ygrp-sponsor .ad a:hover{ text-decoration:

> underline; } #ygrp-sponsor .ad p{ margin: 0; }

> o{font-size: 0; } .MsoNormal{ margin: 0 0 0 0; }

> #ygrp-text tt{ font-size: 120%; } blockquote{margin:

> 0 0 0 4px;} .replbq{margin:4} --> >

>

> [Non-text portions of this message have been

> removed]

>

December 16, 2008

Hi Rhonda

Ive been reading your postings, I used to run too, for years at the track, than

the treadmill, on top of nursing shifts, and years before that waitressing

double shifts through high school and college.

this past year the sciatica has been getting worse , some days worse than others

but pretty much always there.

If I didnt have the percs, I dont know what I would do, they are the only thing

that kills the pain.

I recently had a CT scan which showed my right SI joint has fused in the middle,

so I have pain there too.

The woman orthopedist said that often happens when there is poor movement in the

L4-5 facet joints, and she wants me to have a discogram to rule out that area as

the culprit of the pain.

Another Doc had wanted me to do that last spring, but I guess Im going to have

to do it, the MRI's are just not conclusive enough.

Anyway- Im posting cause I know what your going through with that sciatic pain,

god it stinks, and especially on a cold rainy day like weve got here in DC

today!

hang in there,

RN