for

[Guest guest]

those were very comforting and well chosen words.

[Guest guest]

those were very comforting and well chosen words.

[Guest guest]

,

Congratulations on your new 'handle. and thanks for sending the address.

Caroline

Retired ANT Jersey

.. Just got back from Trustees meeting and waded through 79 emails not sure if

this was on coffee or nct so am putting it on both sorry.

> Tupman

> Mum to Matt 13, 10, Jonty 22 months & Phil 36

> Torbay & S.Devon Branch

> NCT Houseswap Register Coordinator

> NCT UK Trustee

>

[Guest guest]

,

Congratulations on your new 'handle. and thanks for sending the address.

Caroline

Retired ANT Jersey

.. Just got back from Trustees meeting and waded through 79 emails not sure if

this was on coffee or nct so am putting it on both sorry.

> Tupman

> Mum to Matt 13, 10, Jonty 22 months & Phil 36

> Torbay & S.Devon Branch

> NCT Houseswap Register Coordinator

> NCT UK Trustee

>

[Guest guest]

,

Congratulations on your new 'handle. and thanks for sending the address.

Caroline

Retired ANT Jersey

.. Just got back from Trustees meeting and waded through 79 emails not sure if

this was on coffee or nct so am putting it on both sorry.

> Tupman

> Mum to Matt 13, 10, Jonty 22 months & Phil 36

> Torbay & S.Devon Branch

> NCT Houseswap Register Coordinator

> NCT UK Trustee

>

[Guest guest]

,

I would like to tell you about my 13 year course of treatment.

We are going on vacation. I'm keeping your e-mail in my box

and will get back to you by Aug 1st.

Colette, S. FL

[Guest guest]

,

I would like to tell you about my 13 year course of treatment.

We are going on vacation. I'm keeping your e-mail in my box

and will get back to you by Aug 1st.

Colette, S. FL

[Guest guest]

,

I would like to tell you about my 13 year course of treatment.

We are going on vacation. I'm keeping your e-mail in my box

and will get back to you by Aug 1st.

Colette, S. FL

[Guest guest]

Hi Sheila,

My surgeon saw me at about 5 weeks and he wasn't concerned but it looks a

little 'different' since then.

I am not so worried about it now but probably sounds like I could have done

what you are doing on the 29th.

Good luck and don't waste any negative energy worrying about it!

Cheers

" sheilagubbin2003

"

surfacehippy

cc

18/06/2004 02:45

AM Subject

for

Please respond to

surfacehippy@yaho

ogroups.com

Thanks for your email regarding my scar. I just wondered if your

surgeon has seen your wound and what he said about it? My wound is

nearer the top of the scar. Forgive me if this has posted twice, as

my first reply dosen't seem to have posted. I wish you the best of

luck with your wound, it sounds as though it is healing. I am going

in on the 29th June for the little op. Sheila.

[Guest guest]

Hi Sheila,

My surgeon saw me at about 5 weeks and he wasn't concerned but it looks a

little 'different' since then.

I am not so worried about it now but probably sounds like I could have done

what you are doing on the 29th.

Good luck and don't waste any negative energy worrying about it!

Cheers

" sheilagubbin2003

"

surfacehippy

cc

18/06/2004 02:45

AM Subject

for

Please respond to

surfacehippy@yaho

ogroups.com

Thanks for your email regarding my scar. I just wondered if your

surgeon has seen your wound and what he said about it? My wound is

nearer the top of the scar. Forgive me if this has posted twice, as

my first reply dosen't seem to have posted. I wish you the best of

luck with your wound, it sounds as though it is healing. I am going

in on the 29th June for the little op. Sheila.

[Guest guest]

Hello ,

Micah was threw the Easter Seals program from about 1-1/2 till he was 3. His OT

literally saved his life on more then one occasion. I so wish he could have

continued working with Micah. But Easter Seals only works with kids till 3 years

of age and then they are passed onto another group. This other group would not

listen to me when I said he was not going to a School everyday, that I wanted

the services at home. They said they can't do that. (I was told by Easter Seals

that they could!) So I told them I Wouldn't be needing them then. Now we found a

different program, called the Wrap Around. It's for children with learning

issues and other health problems. I found out about this program threw the Child

Development at our Children's Hosp. When we found out Micah has mild Autism.

Enough to cause problems. We are waiting for all the paperwork to be sent back

from the state. Anyone who deals with the state knows how long things can take.

As far as I know he will have an OT. I know with talking to the Children's

Institute when we took him there that he does have a sensory problem. He doesn't

eat and he hated touching cretin textures. He's slowly getting better with some

things. But the lack of eating is still a big issue. He drinks alot of milk with

Carnation Instant Breakfast to make up for the lack of food. So far because he

slowly gains weight the docs don't think it anything to be concerned about. We

shall see. He's back down to 34 lbs. He was almost up to 40. Thanks for the

book. I'll be looking for that Monday.

I hope you have more good days then bad days. I can't imagine dealing with all

that. Is this something all EDS people go threw or is it with one specific type?

My prayers are with you!

HUGGLES,

Grace

EDS, It's a Life Thing

http://www.ehlersdanlos.ca/whateds.htm

Re: For Grace - jumping in

Hi Grace,

My name is and my sons (7 and 10) and I have HEDS.

I have been reading your post but hadn't had time to write. Have you ever

talked to an occupational therapist about sensory integration disorder?

This might help explain a lot of the sensory issues your son is coping with.

" The Out of Sync Child " is a great resource w ith many strategies that

might help. You may be able to find it at your local library.

As far as other coping we take life one day at a time - celebrating the good

days and making the best of it on hard days. A good day would be about 20

or so dislocations a bad day with the growth spurts, rain, snow or changing

pressure systems could be as many as 60 +. We use splints and braces as

needed and both boys use wheelchairs as needed.

Both boys have many allergies to different meds so we have really struggled

with pain management but have done much better since the boys started going

to pain clinic at Sick Kids. They have had a lot of success with tramadol.

Sadly it is still a research drug in Canada so it is avaiable only to a very

few.

We do daily physio and occupational therapy daily to maitain and strengthen

joints. The boys are encouraged to be as active as possible with daily

walks, exercise and as many " normal " activities as possible such as swimming

lessons and shooting hoops. They also participate in a wheelchair

basketball program at our local recreation centre.

We live in a bungalow so we only have stairs to the basement but we do have

to watch for falls (usually Josh).

take care,

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

,

Thank you so much for your kind and supportive response. I have alot of

praying and discussing to do with my doc's before making a final decision.

I'm familiar with the gastric pace maker but my stomach is only slightly

delayed in emptying. I don't believe there is a colonic pacemaker at this

time and like you had stated I'm not sure that it would be an option for me

with the current state of my colon.

Thank you for your prayers and words of wisdom.

[Guest guest]

> I was especially appreciative of Barbara's description of her

feelings

> going into major surgery. I think that our intellect and our

> emotions--not just our bodies---must be prepared for surgery,

especially

> one as invasive as that which you face.

Wise comments, . Being prepared emotionally and physically for

surgery can make all the difference. I am feeling at peace with the

upcoming Gamma Knife because I have had plenty of time to consider,

process and accept this course of action. In contrast, the

jejunostomy was performed on an urgent basis during an emergency

admission. We felt we had no choice, even though I was not prepared,

either physically or emotionally. In such times, I always think of

Lennon's comment, " Life is what happens while you're making

other plans. "

BTW, so glad to hear your recent biopsy went well. That is good news.

B

[Guest guest]

Dear Sweet Petitie

I think your having your husband hide your scale might be a harder transition for you then Shells stopping to smoke ! Seriously i know its hard for you, i want to give you a hug and tell you it will all be ok.................I hope it goes well for you and i know that its going to be difficult for you , my prayers are there for you, I am not however going to pray to St Jude because those prayers are for the hopeless and you are far from that, my idol in here really, so stick to your guns and breathe, and i think your going to end up very happy

colleenbhokoana@... wrote:

Congratuations on coming to a resolution! The best of luck to you in your endeavour. You can beat it!

LTLJSMOM

From: Diane Duenas Sent: Tuesday, July 12, 2005 6:57 PMTo: gastric-bypass-support-kaiser-patients Subject: Re: Ok Breathing

Thank youI had a long talk with Dr Fisher today. I am stopping all protein shakes and bars for now. He also wants me to stop popcorn, peanut butter, cheese and refried beans. He said to stay away from soft high calorie foods. I AM TAKING PERSONAL RESPONSIBILITY and always have. All of us get in a place where we need help, I just seem to need it often LOL. But I have to learn some how, and Im trying not to beat myself up. I need this site so that I can vent and get support when Im having trouble. For the most part, everyone on this site has reached out to me with love and support when I need it the most.I called my surgeon and am following HIS recommendations, after all thats what got me to 150 in the first place. My scale has been hidden in the garage by my hubby. He wont give it back to me for a month. If I need to weigh in before that Im going to call my PCP and weigh in at the clinic once a week or

every two weeks. I gotta get this obsession with the scale handled.Thanks for your support and encouragement!!Huggles> > > Glad to see you are sticking with it . I'm not doing very > well> > > with the weight thing, so no advice from me...just a big hug of > > support!> > > > > >

Colleen

[Guest guest]

Dear Sweet Petitie

I think your having your husband hide your scale might be a harder transition for you then Shells stopping to smoke ! Seriously i know its hard for you, i want to give you a hug and tell you it will all be ok.................I hope it goes well for you and i know that its going to be difficult for you , my prayers are there for you, I am not however going to pray to St Jude because those prayers are for the hopeless and you are far from that, my idol in here really, so stick to your guns and breathe, and i think your going to end up very happy

colleenbhokoana@... wrote:

Congratuations on coming to a resolution! The best of luck to you in your endeavour. You can beat it!

LTLJSMOM

From: Diane Duenas Sent: Tuesday, July 12, 2005 6:57 PMTo: gastric-bypass-support-kaiser-patients Subject: Re: Ok Breathing

Thank youI had a long talk with Dr Fisher today. I am stopping all protein shakes and bars for now. He also wants me to stop popcorn, peanut butter, cheese and refried beans. He said to stay away from soft high calorie foods. I AM TAKING PERSONAL RESPONSIBILITY and always have. All of us get in a place where we need help, I just seem to need it often LOL. But I have to learn some how, and Im trying not to beat myself up. I need this site so that I can vent and get support when Im having trouble. For the most part, everyone on this site has reached out to me with love and support when I need it the most.I called my surgeon and am following HIS recommendations, after all thats what got me to 150 in the first place. My scale has been hidden in the garage by my hubby. He wont give it back to me for a month. If I need to weigh in before that Im going to call my PCP and weigh in at the clinic once a week or

every two weeks. I gotta get this obsession with the scale handled.Thanks for your support and encouragement!!Huggles> > > Glad to see you are sticking with it . I'm not doing very > well> > > with the weight thing, so no advice from me...just a big hug of > > support!> > > > > >

Colleen

[Guest guest]

Dear Sweet Petitie

I think your having your husband hide your scale might be a harder transition for you then Shells stopping to smoke ! Seriously i know its hard for you, i want to give you a hug and tell you it will all be ok.................I hope it goes well for you and i know that its going to be difficult for you , my prayers are there for you, I am not however going to pray to St Jude because those prayers are for the hopeless and you are far from that, my idol in here really, so stick to your guns and breathe, and i think your going to end up very happy

colleenbhokoana@... wrote:

Congratuations on coming to a resolution! The best of luck to you in your endeavour. You can beat it!

LTLJSMOM

From: Diane Duenas Sent: Tuesday, July 12, 2005 6:57 PMTo: gastric-bypass-support-kaiser-patients Subject: Re: Ok Breathing

Thank youI had a long talk with Dr Fisher today. I am stopping all protein shakes and bars for now. He also wants me to stop popcorn, peanut butter, cheese and refried beans. He said to stay away from soft high calorie foods. I AM TAKING PERSONAL RESPONSIBILITY and always have. All of us get in a place where we need help, I just seem to need it often LOL. But I have to learn some how, and Im trying not to beat myself up. I need this site so that I can vent and get support when Im having trouble. For the most part, everyone on this site has reached out to me with love and support when I need it the most.I called my surgeon and am following HIS recommendations, after all thats what got me to 150 in the first place. My scale has been hidden in the garage by my hubby. He wont give it back to me for a month. If I need to weigh in before that Im going to call my PCP and weigh in at the clinic once a week or

every two weeks. I gotta get this obsession with the scale handled.Thanks for your support and encouragement!!Huggles> > > Glad to see you are sticking with it . I'm not doing very > well> > > with the weight thing, so no advice from me...just a big hug of > > support!> > > > > >

Colleen

[Guest guest]

Ah, . It is so painful to read your letter. As a midwife, I have assisted over 3000 beautiful, innocent babies into this world. It's hard to imagine that anyone, least of all parents, could be cruel & heartless to one of these children. But the reality is that many people are totally unprepared, unwilling, unfit to be parents. I am so sorry that your father couldn't or wouldn't step up as a man & give you the love, acceptance, encouragement that you needed and deserved.

Your analogy of the house with the many rooms is beautifully stated. Your spirit & your soul may have been deeply wounded, but not destroyed. Your spirit comes out in the passion with which you express your pain & disillusionment. I think that you are a gifted writer. I'll admit that sometimes it seems like you get in a rut & repeat yourself, but don't we all? I feel privileged that you have shared this very painful part of yourself with us.

Please realize that all of us are sick. At times we feel hopeless, discouraged, angry; every feeling that you have. We may get impatient or irritable. Heck, we do that with our families & friends, so at times we'll do it with the group. I don't think anyone ever intends to be hurtful. Some of this can be from sarc damage, much like a traumatic brain injury can cause a total personality change (usually for the worse). My approach is to give everyone "a little grace and a little space." I don't remember where I first heard that, but I like it. A little grace is like cutting them some slack, the benefit of the doubt, letting love cover the mistakes.

If you don't object, I'd like to share your letter, both parts, with , my granddaughter. She's had so much hurt & abandonment from her parents & other family members. I think it might help her look at it in a different light. Love ya, , and thanks for being you.

Ramblin' Rose

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