Let's chat

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Let's chat

Message  anne le Jeu 14 Mai 2009 - 21:42

Hi there,
we're trying to get an English section of this forum up & going, so if any English speakers manage to get this far, click on 'répondre' at the bottom of this message & type away. You can also leave a message in 'introduce yourself' so others can get to know you a little (I've left a little message on there myself.)
Any French people out there who want to practise their English can use this post too!! Surprised . But English only please!
I've not been a big forum user up to now but I think it's important that we break the solitude that often surrounds people with SAPHO. My daughter's too young to need this for the moment but one day she 'll probably need a place where she can chat to people who know what she's going through.
So, in the hope that this gets off the ground one day soon, I'll love you & leave you.
TTFN
Anne
For any newcomers, this is an ongoing messageboard. The most recent messages are on the last page.
Why don't you post us a message? Smile We'd love to hear from you! Razz


Dernière édition par anne le Mer 23 Sep 2009 - 17:00, édité 2 fois

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Re: Let's chat

Message  anne le Ven 15 Mai 2009 - 18:13

This is in fact a message from our president, Nathalie
I edited it at her request but we had a few teething problems & it's posted as my message...oops - sorry Nathalie!!. Normally the glitch (technical problem) has been corrected so in future I'll be able to 'correct' the English without taking over the post!

Here is Nathalie's message

''I only speak school level English but I will try my hardest to answer & communicate with you. Anne will be there to help us.
I'm looking forward to hearing from you."

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Re: Let's chat

Message  sonny le Mar 19 Mai 2009 - 22:13

Hello anne
My name is Sonia, i'm from Canada, I speek both french & english & I'd be happy to chat with you & your dauther when you want to. I've already wrote a bref profile in the french side and I will live a profile on the english side so you can read.
Hope to read you soon and that your dauther is OK.
Sonia

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Re: Let's chat

Message  anne le Mar 19 Mai 2009 - 22:31

nice to hear from you Sonny. I've read some of your posts on the French forum. I can't stay on line tonight but I'll leave you a longer message soon.
Smile I'm happy to get an answer so soon. Thanks for making the effort!!
Hope your health is OK at the moment.
Talk to you soon
Anne

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Re: Let's chat

Message  sonny le Mer 20 Mai 2009 - 4:49

Hello Anne
I've just posted my story in ''Introduce Yourself'' for you to know me better. At soon as I have more news I will post it so every body can read and understand what we go tru every day.
It's 10:40 pm here & i'm going to bed soon, hope my shouder will let mo sleep tonight, it's been about 3 week that my pain wakes me in the middle of the night. Can't what to see my doctor in June 3rd.
I hope to read you soon.
Sonia

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Re: Let's chat

Message  anne le Mer 20 Mai 2009 - 9:04

Thanks Sonia,
you've been through a lot like most of the others that post on this forum. A lot of problems are due to the fact that SAPHO syndrome is still not widely known to the medical profession (except for the rheumatologist community). My husband has psoriasis & went to see a top notch specialist dermatologist this week - she'd never even heard of SAPHO ...! So, there's work to be done & that's one of the reasons why we're here - as well as getting to know very friendly people Wink .
I'm going to try to write Emma's story over the next few days & post it (both in French & English).
Any one else out there? It would be great if you could do the same so others know that they're not alone!
I'm also going to translate the informative documents about the association, the research & treatments so that English-speakers have access to them. but that will need to be validated by the scientific board each time to be sure that I don't write anything stupid! But it's going to take time.
Talk to you soon - take care & hope the pain gives you a break soon!!!
flower

Anne

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Re: Let's chat

Message  sonny le Sam 23 Mai 2009 - 4:24

Hello Anne
Here I'm still in pain, a have a wonderful family that help me a lot.
I just got the news that my father will have his operation on June 12th, he has the same desease as Pratrick swayze, I'm very nervous about it, a little scared for my Dad. can't wait untill all is over. Sorry but I seem a little more comfortable writing in english, Idid not meen to put an other problem from a stanger on you shoulder but I need to tell somme one other then my family.
Thank you for listening.
Sonia

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Re: Let's chat

Message  Natpat le Sam 23 Mai 2009 - 6:02

Hello Sonia,

First, excuse me for my "bad english", but i just wanted to tell you that I think of you and you can tell us how you feel !

I didn't read all the messages in the chatroom, but you must know that even if we are far away, we think of you and the chatroom is there to communicate.

Nat

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Re: Let's chat

Message  sonny le Mer 27 Mai 2009 - 5:09

Hello everyone
I’m better morally today. I go see my Dad (father) every day to see how he is, and to see is new little dog, it’s a 7 week old Chihuahua, she’s so cute, & stilling some rhubarbs (I don’t know if you know what it is? It is a perennial plants that grows from thick short rhizomes. I took this description from: http://en.wikipedia.org/wiki/Rhubarb if you want to see what it looks like.)
I brouth some to work & the Pharmasist who comes from Rumania never tasted it & seen it before, she loved it so much that I brouth some more for her.
Here the weather’s still a little cold, I can’t wait untill hot temperature comes.
I go read your news in French I see that you got a big storm over there I hope no one had to much damage on there homes.
My little sister just lost her job today, she’ll go search for a new job tomorrow.

That’s weird, I seem to have bad news to tell you every time.

Thank you everyone to be there for me even if you are so fore away.

Hope next time I’ll have good new.

Sonia

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Re: Let's chat

Message  sonny le Jeu 28 Mai 2009 - 5:09

Hello everyone
Hope everything is good?
Here it rained all day today . It’s still cold, plus humid .
I come on the site every day and read every news even in French, right now it is 11h00 pm, you will wake-up soon so I want to be the first to say good day to all.

Sonia

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Re: Let's chat

Message  anne le Jeu 28 Mai 2009 - 15:21

Hi sonia,
thanks for the wake up call this morning Smile
We've had some really hot weather here in France- so hot that everyone complained about it! Then we had loads of storms & some of the members had a bad time of it - hail the size of golf balls!! Now it's just a bit grey & dreary. Suspect
You said the other day that you always seemed to always have bad news when you came on the forum - but then again that's what friends are for, isn't it? to lend an ear.
I'm lucky really - my job's in no danger so we're pretty secure financially now (that hasn't always been the case so it was worth fighting for!). You said your sister's just lost her job & I know that a lot of people on the forum have problems finding or holding down a job 'cos of their health problems. Flo's looking for a new contract from the end of the week for example. It is really hard for a lot of people right now. Is Canada suffering a lot from the economic crisis?
Here's hoping the pain gives you a break & summer decides to turn up soon.
Chin up!!! Talk to you soon.
love
Anne flower
forgot to say we're a rhubarb mad family - we've got some in the garden & my kids are ready to kill for rhubarb crumble with ice cream or custard!!!! Yum yum & it's a springtime fruit or vegetable (not sure which!)

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Re: Let's chat

Message  anne le Jeu 28 Mai 2009 - 22:06

Hi Sonia,
I just looked up what Patrick Swayze has....I'm really sorry, it must be really hard for you & your family No
How is your Dad at the moment? Feel free to talk about it & send private messages if you prefer.
Take care of yourself & keep smiling
love
Anne

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Re: Let's chat

Message  Nathalie38 le Sam 30 Mai 2009 - 12:23

Good morning to all !

I'm again going to make laugh you with my scholastic English but too bad or so much the better for the laugh !!!

I just wanted to greet you and to say that I think of you sincerely.
I hope that little by little this post will more grow with new internauts, and more exchanges of messages.

Talk to you very soon

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keep smiling

Message  anne le Sam 30 Mai 2009 - 12:42

I got your message Sonia.
That's a lot to deal with at one time Crying or Very sad , I hope you're managing to stay positive. I remember january 2008 for us. 1st my grandmother died, 2 weeks later my father in law died (a wonderful man!!!) then Emma was hospitalised , they thought she had bone cancer... then Sapho was diagnosed....I nearly cracked up, it was too much in 1 go & I felt the deep dark hole of depression starting to pull me down. It was really frightening affraid I hope I never get that near to the edge again Evil or Very Mad Evil or Very Mad I can imagine that it's so so hard to climb back out.
I had to control myself for my family's sake - they tend to count on me a lot- & cos in my job, I'm facing students who merit more than a depressed teacher. But it was really hard!!! This January too - Emma was hospitalised again cos the pain was out of control - it took a whole week to do anything about the pain - god I hate watching other people suffer Mad
The main thing is to bounce back bounce & keep fighting!
YES WE CAN!!!
How do you manage to keep up with such an active husband? tell him to start fund raising for SAPHO! There's a reasearch unit at Toronto that's doing stuff on SAPHO related things...
Take care of yourself & talk to you soon
love
Anne
PS Hi Nathalie, nice to see you on the English side Smile . Don't forget we need an introduction from our president Wink

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Re: Let's chat

Message  Nathalie38 le Sam 30 Mai 2009 - 12:52

I do not forget Ann ! Promised !


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Re: Let's chat

Message  sonny le Dim 31 Mai 2009 - 5:24

Hello
I already asked my boyfriend about a fund raise for S.A.P.H.O., but the organization of it need a lot of time & we just did one in May for ‘La Fondation Des Pompiers Du Québec Pour Les Grands Brûlés’ to go to the ‘World Fireman & Policeman Games’ in Vancouver this summer, so right now we are preparing for the competition we’ll be gone for 2 week. Maybe next year we’ll see for the fund raising.

Thank’s for the private message I really appreciate. I know I shouldn’t fill this way. The thing is, the girls I work with always seem to count on me to do everything, & I’m use to do everything, Thursday when I was stuck & couldn’t move I got really frustrated not being able to do everything & mad about my condition & ask the girls to help me, it is something I will need to work on it.

About The Rhubarb (something funny), I made an other pharmacist taste it for the fist time (she from Egypt) I did not have time to tell her to eat it with sugar, when she put it in her mouth she made one of those face , when she taste it again but whit sugar she loved it and brought some home to make her children taste it, but she ate it all . Tomorrow I’ll go give her more, she live not so for from my home. Smile

My dad is OK for now this week he’s on vacation, & Friday is the big day.

See you soon.
Sonia

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Re: Let's chat

Message  anne le Dim 31 Mai 2009 - 8:27

Take care Sonia,
tomorrow I'm going to GB for over a week so I won't be posting. I really hope your Dad's operation goes OK. I'll be thinking of you & I'll get in touch when I get back.
I love you Anne

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Re: Let's chat

Message  Nathalie38 le Dim 31 Mai 2009 - 8:34

Good morning to all,

Sonia I'm thinking of you and your family I love you

Kisses to all and see you soon here

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Re: Let's chat

Message  sonny le Mar 2 Juin 2009 - 5:10

Hello Anne
Have a nice trip Anne.
&
I mist-up the weeks it’s not this Friday but next Friday my Dad’s operation.
Read you next week.

Hello Nath
I read that you don’t feel good & on top of that you hurt you toe & you burn yourself,
Be careful where you step Smile (hi hi..) & I know it’s hard to remember to put sun’s scene at this time of year, we always remember in mid & at the end of summer (I do that too)
Here right now I dot thing I’ll get burn until July, That’s what Weather Canada says anyway.

It’s weird, I didn’t thought it was possible to know when it’s gonna rain soon by your bones. The day before the rain I’m so in pain it’s crazy, & whit the weather we have here it doesn’t give me any break.
I’m glad you got at less a bit of sun, but be careful for the sunburn now & watch where you step Smile .

Love Sonia..

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Re: Let's chat

Message  sonny le Mar 9 Juin 2009 - 17:56

Hello
How was your trip?
Hope you had nice weather?
For my part, I went to say hello on the French side for a while.

So now it’s this Friday the big day for my Dad, I will baby-sit my parent’s dog for the week-end, & that same Friday my sister’s little girl has a dance recital, so I’ll be there to film it so my parent will be able to see it.

Read you soon
Love Sonia

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Re: Let's chat

Message  anne le Mar 9 Juin 2009 - 18:04

Hi Sonia,
hope it's stopped raining where you are. I had better weather in England than we're having in France - can't complain Razz
the trip went well & it was good to spend time with my parents & my sister, I don't see them that often. Trouble is ,now I'm back I've got tons & tons of work - no rest for the wicked!!
Keep smiling while you're waiting for the results of your Dad's op - it's going to be a long weekend. I'm glad you will be keeping busy!
Take care
love
anne

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Re: Let's chat

Message  sonny le Mer 10 Juin 2009 - 4:26

Hello Anne
Don’t work to hard. study
Hope every one is well?
Today, my mom came with the kids & the dog at work, my nephew Nicholas was so happy to see me, he ran so fast that when he arrive on me we both fell on the ground , the dog was so exited to see me too that Gabrielle, his sister, couldn’t hold her any more, so she gave me the dog that was still jumping all over me still on ground , you should of seen it, lol! wow. Nice little show. I was a bit sore from the fall for the rest of the day but I’ll be Ok.

Read you soon, (when you have time.)
With love
Sonia

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Re: Let's chat

Message  anne le Jeu 11 Juin 2009 - 19:26

Hiya Sonia,
heh don't try to catch up with flo on stuntman stuff!
How's your pain at the moment? Tomorrow's the big day for your Dad - we'll be thinking of you
I'll check in regularly to see if there's any news but I'm away without internet access Friday afternoon to Sunday night.
Take care
love
Anne
flower

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Re: Let's chat

Message  sonny le Ven 12 Juin 2009 - 6:15

Hello
My pain is OK for now, with the new medication, I can bear the pain longer.

Tonight & for the weekend I’m babysitting the dog (she’s so cute).

Here the weather is very nice today was sunny & hot, my sister came to sleep at my place last night, so this morning we took the breakfast on the patio, don’t worry I’ve put some sunscreen. So no cherry for me geek .

I find a lost friend this week on the Internet , it’s been at less 13 years that we didn’t see each other. She just wrote a book, so yesterday I drove to Ottawa to buy it, and I can’t wait to read it all cheminée study . I’ll go see her on the 22nd of June, she telling stories in a coffee shop in Ottawa. Her name is Marie Somonne Bilodeau.

My Dad will have is operation a 8h in the morning & be out of the operating room around 2h in the after noon, My Mom should call us to give more news after that. I don’t see why I should go to the hospital & wait, cause I won’t be able to see my Dad Sad , he will be in a observation room for at less 3 days, no visitors allowed Sad Crying or Very sad . So I’ll be waiting by the phone instead .

I hope your family is well.

Read you soon
(See you soon)

Love…
Sonia

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Re: Let's chat

Message  sonny le Dim 14 Juin 2009 - 1:44

Hello Anne
My Dad’s operation went well, he’s very tired but fine.

I’m very tired to, I just wanted to let you know about it.

I’ll write longer next time & I’ll send you a MP with more info.

Hope you & your family is well.

Love…..

Sonia

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Re: Let's chat

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