Let's chat

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Re: Let's chat

Message  sonny le Dim 16 Aoû 2009 - 3:19

Hello Nath!
Hope your Mom will get bether.

I've called Marie-Claude From Québec it was great to talk with someone that understand the situation and to relat our experient by phone .

She experience more complications then I did, I think I was lucky in a sence.

I really hope she'll get bether I'll try to stay in contact with her that's for sure.

Thank You Nath to be here for us that is very kind.

Read you soon... study

Love...

Sonia

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Re: Let's chat

Message  anne le Mar 18 Aoû 2009 - 11:45

Hello Sonia,
it's great that you've got a contact in Quebec now Smile .
It's another example of how important the work of Nathalie & the rest of the board is. This forum & the association is helping a lot of people get information & it puts us in touch with each other so we don't feel so isolated. When things are going well maybe we don't need it so much but during the bad times it makes such a difference to know that there are people who understand what we're going through!!
How's your Dad doing?
Talk to you soon
love
Anne flower

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Re: Let's chat

Message  Nathalie38 le Mar 18 Aoû 2009 - 12:00

Hello !

I'm so happy to read that you managed to get in contact with others.

An immense thanks to you Anne for your help so precious on this forum in English. I'm really pleased !!!

Big kisses to you all and in the hope of reading those who do not much dare to post a message - but maybe one day!


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Re: Let's chat

Message  Nathalie38 le Lun 24 Aoû 2009 - 9:29

Hello !

SONIA !!!!!!!!!!!!!!!!!!!!!!!!


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Re: Let's chat

Message  anne le Lun 24 Aoû 2009 - 10:53

Happy Birthday Sonia

Have a wonderful day!
love
Anne

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Re: Let's chat

Message  sonny le Lun 24 Aoû 2009 - 15:58

Thank you very much! Smile

it is very cool to receive wishies from you, specialy because you are so fore away, in a country I didn't visit "yet".

Thank you soo soo much! cheers

And big kisses to you too!

Love...
Sonia
XXXOOO

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Re: Let's chat

Message  anne le Ven 4 Sep 2009 - 14:11

Hello folks,
what's new? I've gone back to work & we have lots of projects so busy, busy but very interesting. I really enjoy working with young people - it stops me from getting too old & cranky!
Emma is doing OK, some pain but never unbearable & she's dealing with it well. I guess having SAPHO is pretty character building.
Sonia, I hope things are OK for you, I guess you're busy & I really hope that your Dad is OK.
Talk to you soon
love
Anne

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Re: Let's chat

Message  Nathalie38 le Dim 6 Sep 2009 - 23:42

Hello everybody !

How are you ?
It's very too quiet here ! Nothing to tell ?
By waiting to read to you ....

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Re: Let's chat

Message  anne le Jeu 10 Sep 2009 - 18:41

Hello everyone,
I don't really know if other people come to read this from time to time but I hope the English forum gets off the ground one day. Even if I haven't written any messages for a while, I'll receive a message if someone posts & I'll answer as soon as I can.
I'm likely to be a bit preoccupied for a while because my daughter Emma has just started another crisis. She's already missed 2 days of school & is in a lot of pain. We're waiting to see what the doctors decide to do Sad
At least she got a short break from the severe pain although the inflammation never really went away - it just hid for a while Twisted Evil
The middle school she goes to has 3 double flights of stairs & no lift...
I'm hoping we don't get the same scenario as last year. It started exactly the same way 2 days after school term started then the attacks got worse & worse until she finished in hospital with the pain totally out of control pale We don't want to go there again Evil or Very Mad
Here's hoping it's a false alarm - we believe bounce & we won't let SAPHO get us down
Talk to you again soon

Anne flower

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Re: Let's chat

Message  Nathalie38 le Jeu 10 Sep 2009 - 19:16

One thousand kisses to EMMA I love you
I indeed think to you of Emma

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Re: Let's chat

Message  sonny le Lun 14 Sep 2009 - 3:02

Hello
I didn't write for some time, I've been buzy with my boyfriend's phisiotherapy session, plus he can't drive so I'm driving him to his sessoin.

I understand what Emma is going tru, every time I go back to work after vacation, the pain are wrost than ever, "Don't let SAPHO run your life" that's wath I tell my self, easy to say not verry easy to do when the pain is too strough. So we are there for you Emma if you neen.

My Dad is Ok, his drain is out, he eat's well, He's sugar level is a little too high but it's still on evaluation.

My little sister got a car accident the day before her birthday, the 3rd of september, with my parents car. Her left leg, left shoulder & neck are painful. I hope she'll get well soon. I'm happy that she have a good new boyfriend that take's care of her & her kids, he's verry nice.

I'm sorry if I don't come read you soon, but I think you understand & I thank you all for that to be there for us.

Hope to read you soon... study

Love...

Sonia

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Re: Let's chat

Message  Nathalie38 le Lun 14 Sep 2009 - 8:04

I understand Sonia why we did not see you any more.
Lots of news !
I'm happy that your dad is better, not easy every day all this.
I hope that your sister recovers little by little, fortunately there was more fear than real harm.
And you how are you ?
Of course, we understand that you cannot be here all the time, the main thing is to have a little of your news, and that everything settles for you.

Anne, how is Emma ?
I hope that she is better and that the pains eventually calm.
My thoughts are with you


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Re: Let's chat

Message  anne le Jeu 17 Sep 2009 - 14:34

Hello there,
don't worry Sonia, there's no guilt involved here. The forum is there to be used when you want to & when you need to - there's NO obligation to check in all the time!!! Smile
I'll be a little less frequent for a while because of Emma's problems & my workload in general - but I'll try to answer any messages as soon as possible.
Emma's been homme 5 days out of 10 so far ... not so good. The doctor's talking about another cure of Aredia so we'll se what happens.
Great news for your Dad & I hope your sister is getting better - at least she has someone to look after her.
Take care of yourself
love
Anne
flower

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Re: Let's chat

Message  sonny le Mar 22 Sep 2009 - 2:20

Hello

Thank you for your support, I really appraciate it Smile .

I can't wait to see the new Reumathologist on the 30th.

My shoulder is not to bad, painful from time to time.

My boyfriend make's me laugh Razz . As you know he broke his wist & shoulder on vacation, Sad so it's still painfull Sad . I really understand his pain & the fact that he has difficulty sleeping art night, & Evil or Very Mad he dare telling me: Evil or Very Mad "You can't understand how it's painfull & I can't sleep, I'm in so much pain.... Sad Crying or Very sad " I reply; " wecome to the club...." Twisted Evil Hihi! It's not verry funny Sad but at lease now he can understand what I've pass through all these years with that pain, Wink & waking up in the night because of the pain that is still there today & it's still making my life miserable some times Sad .

Hope Emma will get better soon Sad . Tell her not to give up clown , it's worth fitting for Smile .

Nath how are you my dear?

Read you soon... study

Love..

Sonia

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Re: Let's chat

Message  Nathalie38 le Mer 23 Sep 2009 - 9:06

Hello !

Sonia, I hope that your appointment will go well with this new rheumatologist and that he will give you something to help you for the pain.

Anne, how is Emma, and you, the small family?

for me it's still difficult, days and nights are alike, I'm not good at being ill!
I have had big doses of Cortisone for a few days, that helps me a little, but I know that when they stop of the treatment the pain will start up again with renewed vigor.
But it's better than nothing.

Have a good day, big

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Re: Let's chat

Message  anne le Mer 23 Sep 2009 - 16:46

Hello again,
It's really funny about your boyfriend saying that you can't understand what he's going through Sonia
I really hope he realized what he had said later!!!! But it's true that in order for people to understand you have to give them something they can relate to. For example, say have you ever had really bad toothache, when it stopped you from sleeping & each movement was torture? or a severe cramp that makes you want to scream out with pain? ... most people have experienced one of the two. then you can say well it's similar to that but it doesn't go away it just goes on & on... That kind of comparison makes people stop & think - otherwise it's too abstract for them.
Emma's not doing too good. We're still waiting to see if they are going to re do a cure of Aredia.
Nathalie, hold on there - I know you're in bad pain! The news about Dr Hayem being moved out of outpatient clinic is catastrophic for the members of the association. He's THE person who seems to have the most first hand knowledge of SAPHO & he's exceptionally human & understanding. We'll have to fight to get him reappointed.
Talk to you again soon
love
Anne

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Re: Let's chat

Message  anne le Jeu 1 Oct 2009 - 18:48

Hi there,
just a quick update cos I'm really busy (what's new?). On the 11th I'm organizing a communication event. In my village there's a major cross country race every year (we even get family from GB coming to run it!). So this year we're doing a stand to inform people about SAPHO syndrome & a bar so that it's a little more convivial & hopefully make a bit of money for research. We're hoping to get a photo in the local press cos we've got about 20 people running in special AIRSS-SAPHO t-shirts that we had made. I'll try to post a photo here if it works out.
I hope everyone out there is doing OK. Emma's in quite a lot of pain again & she's missed a hell of a lot of school already No I just hope that the doctors make their minds up about what they want to do soon!
Talk again soon
love
anne flower flower

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Re: Let's chat

Message  Invité le Jeu 1 Oct 2009 - 18:56

Hi Anne,

Thanks a lot for the event !

I hope there will be a lot of people and that it will be successful.

Best wishes to Emma and to yours,

Nat

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Re: Let's chat

Message  anne le Jeu 1 Oct 2009 - 19:01

Thanks Nat,
keep your fingers crossed for good weather - everything will depend on that sunny

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Re: Let's chat

Message  Nathalie38 le Sam 17 Oct 2009 - 7:05

Hello !

A small passage here to get news of Sonia, Anne and some other persons who read this forum in English.

Anne your action was a very beautiful success, thanks to you all for such a beautiful mobilization and such energy ! cheers

I wish you a very good day and hope to read your news very soon.


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Re: Let's chat

Message  anne le Sam 17 Oct 2009 - 10:48

Sorry I've been a while.
Hi Sonia, I hope things are OK. Your last news didn't sound too positive - nothing new from the doctor & no real progress. I hope things are moving forward a bit! Smile
Last weekend was a real success (Thanks Nath for your support!)
The race called 'Les 9 Clochers' = the 9 bells cos the runners pass in front of 9 churches took place on sunday 11th. We had about 12 people running in SAPHO t shirts & we ran a bar to make money & let people know what SAPHO is all about. Loads of people came, asked questions & put money in the box. The 1st guy who bought a coffee put 10€ in the box when we told him what we were doing... Shocked I was stunned!
So, it was a really good idea to let people pay what they wanted - I'm just amazed at how generous people are cheers
So, we made quite a bit which is going directly into research
thankyou to everyone who participated!!!
Next year we'll do it again with 50 people in SAPHO t shirts (so if anyone fancies a trip to France....) Smile
We also made a lot of contacts, a sports shop who are going to do the t shirts cost price so we can sell & someone who might print out AIRSS leaflets for us...
Anyway, I've got to go
Be back soon
I hope everyone out there is well & pain free! Emma's a lot better since her Aredia treatment last week & is going back to school normally cheers

anne

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Re: Let's chat

Message  sonny le Dim 18 Oct 2009 - 17:44

Hello everyone!

Here, it's not to bad, I've found a great doctor, she want me to do a MRI & a scan to see the progress of my situation so she can give me the apropriate tretment. That I like! Smile And she's teling me what she see in the test result & on the x-ray, what she thinks, & what she 's giving me & why she's giving me that. I like that a lot! Smile

I'm really happy about the run you organize Anne. That is wonderful. Maybe one day I'll go run or march with you.

I'm happy for Emma too.

Read you soon study

love...

Sonia

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Re: Let's chat

Message  anne le Dim 18 Oct 2009 - 18:41

Hi Sonia,
glad to hear you've a good, communicative DR & you're getting good treatment ! The run involved about 1400 runners so our 12 were just a drop in the ocean but it's a start ; -)
I was the president of 'Les 9 Clochers' 3 years ago so that's why they were happy to let me use the occasion as a showcase for SAPHO Syndrome. I ran it once (just the 11km) but now I've put on too much weight & I'd die if I tried!!!
Talk to you again soon
love
Anne flower

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Re: Let's chat

Message  Nathalie38 le Mer 4 Nov 2009 - 5:53

Hello !

I've come to get the news.

Howare things Sonia? How's your new treatment going, & the pains ?

Anne, how is Emma ? And you ?

I think of you often, so give us a little of your news Wink


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Re: Let's chat

Message  anne le Mer 4 Nov 2009 - 9:38

Hi Nath,
you were up very early today!!! I guess that means you're not so good Crying or Very sad
I've been away on holiday for a week...Morocco sunny
Now I'm back I'm full of cold & coughing, no voice (difficult for a teacher) & really high blood pressure (16 or 160). Suspect
Never mind!!!
Emma's doing well since her last treatment of Aredia - no pains in her knees, just a little on the top of her foot. She's doing so well that she's starting into adolescent behaviour Rolling Eyes ... well I guess that's positive!!???
Got to go...I'm taking my parents to the airport.
Let us know how things are going when you have a little time Sonia. We generally say that no news is good news so I hope that's true for you!
Love
Anne I love you

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Re: Let's chat

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