Update on

July 30, 2007

,

It is good to hear that you were able to communicate with your ex on this issue and possibly that he will work to make things better on her next visit to him. I am sorry to hear that she is not doing well and that you may have to add meds. I pray that the communication can continue between you her dad for her benefit. Glad you did not have to get out the boxing gloves.

Veri

Update on

Having taken Robbins advice!!!! thank you soooooo much i am sure

that the court case will be brief *giggle*

No seriously...... i attempted to speak to the granny and she was

adamant that i was to blame.... i tried *sigh* to tell her that i was

not here to apportion blame but that i wanted to be reassured that

would not be placed at risk again....she refused to speak to me

so i made it very clear to her what my feelings about her were.

My ex has amazingly enough stood by me and admitted that his mother is

at fault and has been very worried. We spoke to the childrens unit and

they said that they hoped that the meds given by mistake (steriods)

would have made a difference to her condition but as it hadnt shes

obviously going downhill again. Her fingers have gotten much worse in

a week or two and one fingertip is at an almost 90 degree so she is

being re referred back to the main paed hospital for further treatment.

It is also felt that she is not doing as well on MTX as we had hoped.

There is talk of additional meds being introduced.!! how many meds can

one little person take.

Has anyone else had any corrective measures taken on their fingers???

Back to the coffee pot for me

and (11) HLA B27+ ERA

SW Scotland

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July 31, 2007

,

GREAT News girl..... Now let's see what follows. I would like to see s hands if you don't mind.

I bet you and will both be jumping up and down when it is finally in your hands. It will help you out alot.

The Parafin Wax does help . It's amazing but it worked.

RobbinGet a sneak peek of the all-new AOL.com.

July 31, 2007

Hi

Have spoken today with the ortho staff who give out and measure the

children for splints..... individual splints for her fingers are not

an option they say as her fingers splay up the way not down. The

finger tips are off at an angle to the side and then up if that makes

sense. I will gladly email pictures to anyone who wants to see what

im talking about.

Today she was unable to hold a cup so i have been feeding her.

OT is coming to the house on Monday and will give her wax baths for

her hands to help. Her night time splints are to be widened at theh

thumb and there is marked swelling of all joints on her hands. there

is also hot areas but no redness but they are worried that the hands

are generally going down hill fast.

I am going to the Disability Resource Centre soon and will purchase

all the aids to allow her independance within the house.

has made a good argument for some items to be purchased for her like

a writing slope for in the house for when she does her homework etc

her disability benefit will pay for this and its what its for i

suppose, Although she did say that it would help her if i bought her

a new High school musical DVD..... i saw a huge difference in her

pain levels once we got home!!! hahahaha......

she has also started collecting pins from different countries around

the world! the addiction started in disney as she collected all her

Disney pins we now have pins from Canada ( my boyfriends family) and

NSW in Australia (my pen friends)i can see a vast reduction in my

bank balance as we speak :S

OOOOOOOOOooooooooooooooo and theeeee best news i have had all week

well all year really! this will tickle all you mums out there with

annoying ex partners! i finally got an assessment today for child

maintenance *running around for joy* getting it is a different story

i know but hey lol i got an award made wooooooot

I will sleep very smugly tonight * Robbin will too i bet*

Smugness isnt allowed as a christian trait i know ! but God will

forgive me.

and Wee HLA B27+ blah blah blah lol

SW Scotland

Having taken Robbins advice!!!! thank you soooooo much i am sure

> that the court case will be brief *giggle*

>

> No seriously...... i attempted to speak to the granny and she was

> adamant that i was to blame.... i tried *sigh* to tell her that i

was

> not here to apportion blame but that i wanted to be reassured that

> would not be placed at risk again....she refused to speak to

me

> so i made it very clear to her what my feelings about her were.

>

> My ex has amazingly enough stood by me and admitted that his

mother is

> at fault and has been very worried. We spoke to the childrens unit

and

> they said that they hoped that the meds given by mistake

(steriods)

> would have made a difference to her condition but as it hadnt shes

> obviously going downhill again. Her fingers have gotten much

worse in

> a week or two and one fingertip is at an almost 90 degree so she

is

> being re referred back to the main paed hospital for further

treatment.

>

> It is also felt that she is not doing as well on MTX as we had

hoped.

> There is talk of additional meds being introduced.!! how many meds

can

> one little person take.

>

> Has anyone else had any corrective measures taken on their

fingers???

>

> Back to the coffee pot for me

>

> and (11) HLA B27+ ERA

> SW Scotland

>

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

> Ready for the edge of your seat? Check out tonight's top picks on

TV.

>

August 1, 2007

,

How long have you been divorced and waiting to get some financial help from her father? He should have been helping all along just because it is the right thing to do. Of course I have one of those and he absolutely rufuses to pay anything that the court does not deduct from his paycheck before he sees it. But at least the courts will do that now. Jaye did very well last night, of course the most strenous thing she had to do was punch the remote to turn the television on and off. Her wrist is getting better I do think.

Veri & Jaye 13 poly

Re: Update on

,

GREAT News girl..... Now let's see what follows. I would like to see s hands if you don't mind.

I bet you and will both be jumping up and down when it is finally in your hands. It will help you out alot.

The Parafin Wax does help . It's amazing but it worked.

Robbin

Get a sneak peek of the all-new AOL.com.

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

August 1, 2007

Hi Veri

9 long tedious years, but i am just glad of something even if its

only the award and i dont actually get the finances i know that

sounds mad, but i have always taken great pride in providing for

on my own. I left him in 1998 best move i ever made lol left

with my child on my hip and my dignity

s lying in bed today, her hips and knees hurt and keep

cracking ...... i made her get up for a little while just to get her

joints moving another long day stuck in the house!!!

Her thumb is still very badly swollen and ive been told to leave her

splints on her for a few days. so the most she has done it hit the

play button on the dvd player

No phone calls from her dad to see how she is despite him knowing she

was sick on tuesday when she came back to me early from her holiday

with her dad. no more than i expected tho i suppose.......

Got to run her majesty calls from above !!! hahaha

and Wee HLA B27+

SW Scotland

>

> ,

>

> How long have you been divorced and waiting to get some financial

help from her father? He should have been helping all along just

because it is the right thing to do.Â Of course I have one of those

and he absolutely rufuses to pay anything that the court does not

deduct from his paycheck before he sees it.Â But at least the courts

will do that now. Jaye did very well last night, of course the

most strenous thing she had to do was punch the remote to turn the

television on and off. Her wrist is getting better I do think.

>

> Veri & Jaye 13 poly

>

> Re: Update on

>

> ,

>

> Â Â GREAT News girl..... Now let's see what follows.Â I would

like to see s hands if you don't mind.

>

> I bet you and will both be jumping up and down when it is

finally in your hands. It will help you out alot.

>

> Â Â The Parafin Wax does help . It's amazing but it worked.

>

> Robbin

>

> ,

>

> Â Â GREAT News girl..... Now let's see what follows.Â I would

like to see s hands if you don't mind.

>

> I bet you and will both be jumping up and down when it is

finally in your hands. It will help you out alot.

>

> Â Â The Parafin Wax does help . It's amazing but it worked.

>

> Robbin

>

> Get a sneak peek of the all-new AOL.com.

>

______________________________________________________________________

__

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

August 1, 2007

hi ,I am having a difficult time picturing what 's fingers do - I think I get the splaying part, but the tips off at an angle what I can't envision...'s are swan neck, pretty typical I think, very hyper-mobile on one joint and flexed (stuck that way too) on the tip. I'd be interested in the pics, for the sake of understanding. If only a few more DVD's would make her hands all better, I'd send them myself! The wax baths are good - had them for my post-surgery rehab and 's OT too - have given some thought of purchasing as someone said WalMart here has okay price.Still think we need to have Robbin go knock your ex up the side the head, not even calling to see how is feeling after her holiday with him - but I guess you can't make the heartless have a heart...Congrats on the good news regarding your ex - I hope you actually receive it soon!Please tell we are thinking of her.Hugs,

and quacksmum <quacksmum@...> wrote: Hi Have spoken today with the ortho staff who give out and measure the children for splints..... individual splints for her fingers are not an option they say as her fingers splay up the way not down. The finger tips are off at an angle to the side and then up if that makes sense. I will gladly email pictures to anyone who wants to see what im talking about. Today she was unable to hold a cup so i have been feeding

her. OT is coming to the house on Monday and will give her wax baths for her hands to help. Her night time splints are to be widened at theh thumb and there is marked swelling of all joints on her hands. there is also hot areas but no redness but they are worried that the hands are generally going down hill fast. I am going to the Disability Resource Centre soon and will purchase all the aids to allow her independance within the house. has made a good argument for some items to be purchased for her like a writing slope for in the house for when she does her homework etc her disability benefit will pay for this and its what its for i suppose, Although she did say that it would help her if i bought her a new High school musical DVD..... i saw a huge difference in her pain levels once we got home!!! hahahaha...... she has also started collecting pins from different

countries around the world! the addiction started in disney as she collected all her Disney pins we now have pins from Canada ( my boyfriends family) and NSW in Australia (my pen friends)i can see a vast reduction in my bank balance as we speak :S OOOOOOOOOooooooooooooooo and theeeee best news i have had all week well all year really! this will tickle all you mums out there with annoying ex partners! i finally got an assessment today for child maintenance *running around for joy* getting it is a different story i know but hey lol i got an award made wooooooot I will sleep very smugly tonight * Robbin will too i bet* Smugness isnt allowed as a christian trait i know ! but God will forgive me. and Wee HLA B27+ blah blah blah lol SW Scotland Having taken Robbins advice!!!! thank you soooooo much i am sure > that the court case will be brief *giggle* > > No seriously...... i attempted to speak to the granny and she was > adamant that i was to blame.... i tried *sigh* to tell her that i was > not here to apportion blame but that i wanted to be reassured that > would not be placed at risk again....she refused to speak to me > so i made it very clear to her what my feelings about her were. > > My ex has amazingly enough stood by me and admitted that his mother is > at fault and has been very worried. We spoke to the childrens unit and > they said that they hoped that the meds given by mistake (steriods) > would have made a difference to her condition but as it hadnt shes > obviously

going downhill again. Her fingers have gotten much worse in > a week or two and one fingertip is at an almost 90 degree so she is > being re referred back to the main paed hospital for further treatment. > > It is also felt that she is not doing as well on MTX as we had hoped. > There is talk of additional meds being introduced.!! how many meds can > one little person take. > > Has anyone else had any corrective measures taken on their fingers??? > > Back to the coffee pot for me > > and (11) HLA B27+ ERA > SW Scotland > > > > > > > --------------------------------- > Ready for the edge of your seat? Check out tonight's top picks on TV. >

Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

August 2, 2007

,

I understand the pride that comes with caring for your child. Although it would be much easier if you had the financial support. I am not sure how I would have survived without it, but then I had three kiddo's when I booted my ex out the door after 18 years of marriage. I have no family near here but do have my church family. My own family all wanted me to move near one of them and that gave me a choice of three different parts of the country but I could not do that for many different reasons. I do pray that you will get the support for . I do not know how things work in Scotland, but here the support can not be erased for any reason unless both parties agree to it. I know of times that the mom was able to get the money even after the children had grown up because the father had refused to pay while the child was at home. This award to you for maintenance may be what you need to help as she grows into a young adult. If you get some finances now and do not need them to live on, if you put it away for at a later date for medical or whatever. My ex is supposed to pay about 70% of all the kids medical bills that is not covered by insurance. Thats because he earns alot more money then I do. Of course I have to take him to court over all those bills and sometime it is just not worth it so I pay them in order for the doctors/dentists/hopsitals not to file suite against me. I will pray for you and . Do you have other kids?

Veri & Jaye 13 poly

Re: Update on

>

> ,

>

> Ã‚ Ã‚ GREAT News girl..... Now let's see what follows.Ã‚ I would

like to see s hands if you don't mind.

>

> I bet you and will both be jumping up and down when it is

finally in your hands. It will help you out alot.

>

> Ã‚ Ã‚ The Parafin Wax does help . It's amazing but it worked.

>

> Robbin

>

> ,

>

> Ã‚ Ã‚ GREAT News girl..... Now let's see what follows.Ã‚ I would

like to see s hands if you don't mind.

>

> I bet you and will both be jumping up and down when it is

finally in your hands. It will help you out alot.

>

> Ã‚ Ã‚ The Parafin Wax does help . It's amazing but it worked.

>

> Robbin

>

> Get a sneak peek of the all-new AOL.com.

>

__________________________________________________________

__

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

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

October 30, 2007

Thank goodness! Thanks for the update

Tonia

>

> Hi for those that wanted to know 's surgery is now over and he

> is in recovery and all went well.

>

> I am sure that Merissa will give you more information later when she

> can.

>

> Pippa x

>

October 30, 2007

Hi Pippa, Thanks for keeping us up-to-date. I am really happy things went well for ! Love, IsabellaPippa <kevin.brown150@...> wrote: Hi for those that wanted to know 's surgery is now over and he is in recovery and all went well.I am sure that Merissa will give you more information later when she can.Pippa x __________________________________________________

October 31, 2007

Thanks Merissa for the update on . It is good to know he is doing

so well in spite of the extensive surgery and all the tubes. Let him know

we're still here for him and wish him the best.

We're here for you too.... the caretaker has a rough time so know that

our prayers go out to you as well.

Hugs to you both,

Maggie, AlabamaSee what's new at AOL.com and Make AOL Your Homepage.

November 6, 2007

Notan & Vicki,My surgery is scheduled for the 20th of this month...they don't mess around at Cleveland! The reason for my surgery is that the hernia comes out and puts pressure on my esophagus so I can't swallow, similar to the feeling of achalasia. It was enough for Dr. Rice to want to get me in and fix it. He said I couldn't and shouldn't have any more dilations as it could rupture. Not a pretty picture for me but enough for me to want to listen. It is a little depressing for me knowing I will be there over Thanksgiving, but since I can't eat, I can wait until after the surgery and the healing to eat a great meal.I am so glad that is doing so good! I hope it continues and he sees good health over the holidays!countrybink <vickilynne1@...> wrote: Hi Crystal, I wish I had known, too!! We are home now and is feeling great. His girlfriend is on her way over to see him, so he's extremely happy right now - lol!! I couldn't agree with you more about The Cleveland Clinic, Dr. Rice and the entire staff. What an outstanding facility. Very impressive. We felt so comfortable and secure. I'm sorry to hear about your major surgery. I can't imagine not having family around for it. Please let us know when you have a date, and if it coincides with our visit for follow-up in 2 months, we'll make it a point to let you know. Take care, Vicki P.S. Listen to Notan, he's a wealth of information

I just wanted to take a minute to thank everyone for the kind words > and support. It means the world to us. slept well last > night, and is even getting up to walk to the bathroom. Of course, he > has pain, but the meds are working. He struggles a bit with the > shots of Heparin 2x/day as he is quite "needle phobic" and it's VERY > traumatic

for him...even more so than the surgery! If you'd like to > check out his site at The Cleveland Clinic, go to www.thestatus.com. > Name: Fuller, Password: shampoo-onion. Thank you again. Although I > wouldn't wish this on anyone, it is comforting to know that we're not > alone. Hugs, Vicki >

November 7, 2007

Hi Crystal,

No, they do not mess around at Cleveland! I'm glad to hear you'll be

having surgery so soon, even though it's over Thanksgiving. You can

always have a post-Thanksgiving meal with all the good stuff at a

later date, right? Lots of emotions for you right now, I'm sure. Take

care and know you're in our thoughts. is getting stronger

each day - thanks for asking Vicki

I

> just wanted to take a minute to thank everyone for the kind words

> > and support. It means the world to us. slept well last

> > night, and is even getting up to walk to the bathroom. Of

course, he

> > has pain, but the meds are working. He struggles a bit with the

> > shots of Heparin 2x/day as he is quite " needle phobic " and it's VERY

> > traumatic for him...even more so than the surgery! If you'd like to

> > check out his site at The Cleveland Clinic, go to

www.thestatus.com.

> > Name: Fuller, Password: shampoo-onion. Thank you again. Although I

> > wouldn't wish this on anyone, it is comforting to know that

we're not

> > alone. Hugs, Vicki

> >

>

November 8, 2007

I am planning a huge meal that someone else is going to cook for me after I get home! I hope everyone here on this forum has a wonderful, healthy Thanksgiving and remembers that we are all here for everyone else!Crystal Re: Update on

Hi Crystal,

No, they do not mess around at Cleveland! I'm glad to hear you'll be

having surgery so soon, even though it's over Thanksgiving. You can

always have a post-Thanksgiving meal with all the good stuff at a

later date, right? Lots of emotions for you right now, I'm sure. Take

care and know you're in our thoughts. is getting stronger

each day - thanks for asking Vicki

I

> just wanted to take a minute to thank everyone for the kind words

> > and support. It means the world to us. slept well last

> > night, and is even getting up to walk to the bathroom. Of

course, he

> > has pain, but the meds are working. He struggles a bit with the

> > shots of Heparin 2x/day as he is quite "needle phobic" and it's VERY

> > traumatic for him...even more so than the surgery! If you'd like to

> > check out his site at The Cleveland Clinic, go to

www.thestatus. com.

> > Name: Fuller, Password: shampoo-onion. Thank you again. Although I

> > wouldn't wish this on anyone, it is comforting to know that

we're not

> > alone. Hugs, Vicki

> >

>

March 4, 2008

All,

Just to add to Tonia's post, left me a voicemail on Sunday afternoon -

haven't had a chance to call her back yet as we were out of town. I plan on

calling her tomorrow. She also sounded great on her message, and had mentioned

rehab. She sounded very upbeat and positive, and like she was doing well. Will

update after I speak with her.

Love,

in NY

---- toniasdogsandi <toniasdogsandi@...> wrote:

> I just got off the phone with and she sounded great! She is now

> in rehab and likes that much better.She is blocked from the site

> though , so she has no connection with us.Her son and daughter n law

> are gone but will be back this weekend and she is coming home Wed.WOW!

> All in all she said shes good, her incisions hurt but they are giving

> her meds to keep her comfortable and DR Rice has been great.

> Im so glad she is doing so well.She wanted me to give you all a

> update

> Tonia

>

July 11, 2008

, that is awesome! Congrats on the 4.0. I know you are so deserving and I

am beyond happy for you. I do understand what camp means to you, thats why I

continue to volunteer in the capacity that I do. I hope all goes well and the

kids get to see you, you are an inspiration to them just as they are to

you.....hugs!

Donna ************** Get the scoop on last night's hottest shows

and the live

music scene in your area - Check out TourTracker.com!

(http://www.tourtracker.com?NCID=aolmus00050000000112)</HTML>

July 12, 2008

Hi ,

Congrads on the All A's girl Yipppppeeeeee Pat yourself on the back :-).

Your getting there and you will be very proud of yourself when you are

finished. :-). Ummm You should be very proud of yourself NOW :-).

never got the experience of going to Camp. But this Summer she is

doing the VBS which will be helping as a Team player. I did though show her

there's more than you think outside in this world. Other's in worse shape.

She enjoys talking to the Kid's and listening. She also does the same with

Seniors. She went through as you say Poor me issues but I never let her stay

there long. lololol. Just like your Mom we Mom's some what push you girls to

see

theres more to life than that.

, Your Mom is there and as I read your post you have taken a lot of

what she taught you to spread it into others around you:-). The issues with

your JA needs to be dealt with. You deserve some down time though to rest. But

to also reflect what you have done so far. You Inspire other kid's just by

being there to listen. When you were a kid what did you want? I bet it would

have helped to have someone there to listen to you. Keep up what your doing at

the Camp. Keep in touch with those kid's as your words help them :-).

and I are very Proud of you :-).

Robbin

**************Get the scoop on last night's hottest shows and the live music

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July 12, 2008

-YEAH on the great grades, wtg, keep up the good work.

I hope you will finally make it to camp, i know what it means to you

and how important it is to you and the kids.

Im so behind the times, when did your dx get changed to MCTD, how did

they determine that, I'd be very interested to know.

hugs Helen and (10,systemic)

-- In , Salvucci <lsalvucci42@...> wrote:

>

> Well it looks like I wont be heading to camp tomorrow, which is a

total bummer. The fires are still pretty bad, but hopefully by

Tuesday everything will be cleared up and I can continue on with my

plans. I started volunteering at Camp Okizu seven summers ago, I was

in the midst of a horrible flare feeling bad about everything, I was

17 years old and I felt like I couldn't do anything without being in

pain or getting horribly fatigued, I didn't feel like my body was my

own, and I had a pretty bad case of the poor me's. My mom encouraged

me to get myself out of my funk by going and helping people who were

worse of then me, because yes what I was going through was horrible

and she hated to see me in pain, but at the same time there were

people who had it much worse then me. She told me to go out and find

something I could do instead of focusing on all the things I couldn't

and that if I did go out and help someone I would feel a lot better

about me and in

> return would help someone else feel better. So that first summer I

headed up there for a week just to give it a shot, I knew no one, I

had never stayed away for nine days without anyone i knew, it was all

very knew. I came back a different kid, I realized that what I was

going through made me a stronger more compassionate person, listening

to these kids talk I also realized that if they could stay positive

so could I. It felt good to realize me just being there helped. I

made a difference just by being me and listening to what they were

going through. I have returned every year since. So I'm hoping that

I will be able to still make it up there, because the kids need the

staff, and the reminder every year of how lucky I truly am is soo

important. I come back feeling blessed and more centered.

>

> In other news I received my grades for the first semester of my

graduate program.. drum roll please.. 4.0 yep I got all A's. I was

incredibly stoked and I am feeling great about this decision to

pursue teaching, not to mention I absolutely love my cohort (fancy

name for the other people I will take all my classes with).

>

> As far as the MCTD/JA/Whatever we want to call it, I'm not doing

well and I'm not sure why that is. I am scheduling an appointment for

when I get back from camp because my shoulders, knees, and wrists

aren't so hot and something needs to be done. Ugh it looks like its

back to meds I go. This is unbelievably disappointing and yet, if I

want to lead an active life I need to be willing to do what it takes

to get there. So that's an update from me on me.

>

> With Love,

> (MCTD, 23)

>

July 14, 2008

Big, gentle, hugs !

I do hope you'll still be able to get to the Camp. I know how much helping

there means to you.

I am soooo excited and proud to hear what a great job you did in your

courses! I'll be sharing that news with Josh, of course. May help keep him

on the right track : )

I'm feeling a little bit bummed to hear about your joint issues. I know you

probably so wish that would just stay out of the picture and you could move

ahead without any of the nagging pain and related symptoms but it seems, too

often, that it's lurking just beneath the surface. Josh is working part time

but had to miss a day of work the week before last. Just couldn't handle.

Most days though, he's been doing okay. I think over time you learn better

how to handle it and how to pace yourself, through trial and error.

Well, thanks for sending the update. I hope everything is a go, come

Tuesday, for Camp this year!

Aloha,

Georgina

Update on

Well it looks like I wont be heading to camp tomorrow, which is a total

bummer. The fires are still pretty bad, but hopefully by Tuesday everything

will be cleared up and I can continue on with my plans. I started

volunteering at Camp Okizu seven summers ago, I was in the midst of a

horrible flare feeling bad about everything, I was 17 years old and I felt

like I couldn't do anything without being in pain or getting horribly

fatigued, I didn't feel like my body was my own, and I had a pretty bad case

of the poor me's. My mom encouraged me to get myself out of my funk by going

and helping people who were worse of then me, because yes what I was going

through was horrible and she hated to see me in pain, but at the same time

there were people who had it much worse then me. She told me to go out and

find something I could do instead of focusing on all the things I couldn't

and that if I did go out and help someone I would feel a lot better about me

and in

return would help someone else feel better. So that first summer I headed

up there for a week just to give it a shot, I knew no one, I had never

stayed away for nine days without anyone i knew, it was all very knew. I

came back a different kid, I realized that what I was going through made me

a stronger more compassionate person, listening to these kids talk I also

realized that if they could stay positive so could I. It felt good to

realize me just being there helped. I made a difference just by being me and

listening to what they were going through. I have returned every year since.

So I'm hoping that I will be able to still make it up there, because the

kids need the staff, and the reminder every year of how lucky I truly am is

soo important. I come back feeling blessed and more centered.

In other news I received my grades for the first semester of my graduate

program.. drum roll please.. 4.0 yep I got all A's. I was incredibly stoked

and I am feeling great about this decision to pursue teaching, not to

mention I absolutely love my cohort (fancy name for the other people I will

take all my classes with).

As far as the MCTD/JA/Whatever we want to call it, I'm not doing well and

I'm not sure why that is. I am scheduling an appointment for when I get back

from camp because my shoulders, knees, and wrists aren't so hot and

something needs to be done. Ugh it looks like its back to meds I go. This is

unbelievably disappointing and yet, if I want to lead an active life I need

to be willing to do what it takes to get there. So that's an update from me

on me.

With Love,

(MCTD, 23)

June 30, 2009

Dear Tonia,

How frustrating this must be... When you're a mum and you have to watch your

child go through this all and not be able to help out more than you can... I can

only imagine what that must feel like.

Tonia, please, for the sake of , please try to stay calm, no matter how

hard that is. Vent over here, at the board, but please please stay calm when

you're with and when you're around the docs. It's not helping if

you're getting angry and/or burst out (no matter how understandable that

reaction would be). You do whatever you can and you've always trusted '

hospital. Trust them now too. Bear in mind that they may not have the best

bedside manners, something you've said regularly before but you also mentioned

that that doesn't matter that much as long as they give the best possible

treatment, but still they do have a lot of experience and they do always seem to

know what they are doing.

Sure you want an answer now and sure you have a right to that answer, but please

be carefull and keep focussed on your aim, your goal: getting well again.

Waiting one more day or even one more week, would it really really make a

difference? I know that's frustrating and I know it's easy for me to say, but I

just think it needs to be said, no matter how much I agree with you that this is

no way at all to treat a patient and to communicate with a patient.

Please stay calm whenever you need to and please vent whenever you are in the

right place to do so (e.g. here on the board). We understand where you're coming

from and you have us all backing you up and that is exactly what I am trying to

do now.

Lots of love and hang in there, OK?!!!

Isabella

________________________________

From: toniasdogsandi <toniasdogsandi@...>

achalasia

Sent: Tuesday, June 30, 2009 4:50:06 PM

Subject: Update on

They couldnt get manometry tube in yesterday so today they are trying it with

him only partially asleep along with a scope today! I have never heard of

that.Anyone here have that done before? How on earth is that going to happen

with a teenage boy or anyone for that matter?

Then they will hopefully know what to do. We had an appointment yesterday to

talk with Dr Rice, we waited an hour for him in a room in his office and he told

the nurse we had nothing to talk about till after todays test!!! Omg I had

questions about todays test.I am in shock.they also mentioned a forceful

dialation .Anyone had that?

Hope to know something today.Please keep in your prayers-he is really

melting down.My poor kid!

June 30, 2009

Isabella, You know how to say things so well!

Tonia, hang in there. I know it is tough, especially when it is your child, but

do avoid being upset in front of and the doctors. will be as tough

as you can be. Please keep us posted.

You and are in my prayers.

InVa

Achalasia free since 2/25/2008

>

> Dear Tonia,

>

> How frustrating this must be... When you're a mum and you have to watch your

child go through this all and not be able to help out more than you can... I can

only imagine what that must feel like.

>

> Tonia, please, for the sake of , please try to stay calm, no matter how