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#1 jaxs


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Posted 15 September 2008 - 03:29 AM

Hi there hope you guys are ok. I have not been on for a while, I'm just too tired to type some days. At the moment I'm doing an appeal for my youngest son who has alopecia, as they are trying to put him into another unit that I disagree with, after being diagnosed with anxiety and school phobia, and on prozac. It's a nightmare this is the 4th year for us to deal with all this...it doesn't help being tired but I can't give up because I won't let this condition rule my life...

But good news is my swelling to my legs seem to have reduced a little but still in a lot of pain in my ankle. I'm out of breath a lot these days and I'm coughing again constantly. I go to the specialist on Thursday so I have a list of things to tell haha.

I also met my cousin and her husband she has scleroderma. I haven't seen her since I was a baby, I'm 45 now ...she's 53..but it was great meeting her for the 1st time in years. She has lung involvement and is in a wheelchair plus a load of other problems and I was scared at first because I didn't know what to expect. (I've met no one before with scleroderma, and didn't know what to expect) there's nothing wrong with me compared to this lady, and I'm so glad I pushed myself to meet her. She's on my dad's side of the family and as far as I know there is no one else with condition, its sad because of the circumstances we met up but I'm so glad and happy we did. Thanks for reading. :rolleyes:

Warm Hugs,
live life for today and not for tomorrow

#2 Snowbird


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Posted 15 September 2008 - 10:08 AM

Hey Jaxs

Nice to hear from you, welcome back! Sure hope you can get that business sorted out for your son so that he has what he needs and is diagnosed accordingly, it will a big relief to you when you finally do, I'm sure.

It must have been interesting to meet your cousin after all those years, even though sad in another way as you said...and to discover she has scleroderma too....I suspect that was an automatic connect and hopefully, you'll be able to keep in touch. I don't know of anybody on either side of my family with this this either...but my cousins and I do share Fibromyalgia.....all those genes are interesting in their own right but albeit they can be nasty too. :o
Sending good wishes your way!

#3 Amanda Thorpe

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Posted 15 September 2008 - 01:20 PM

Hello Jaxs

Your son has the best advocate he could have, you. The alopecia itself is hard, my sister, who is much older than your son, is loosing her hair because of follicular lupus.

It's always a mixed bag meeting someone else with scleroderma for the first time. It's wonderful to see face to face another human being living with the same disease you have but also difficult to see in the flesh aspects of the disease you don't have nor want. I am glad that overall it was a positive experience. I have certainly found meeting others tremendously helpful.

Please keep us posted on how the appt on Thursday goes and I hope you get some good answers. :)

Take care.

Amanda Thorpe
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#4 canon


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Posted 15 September 2008 - 04:30 PM

Hi jaxs,

Glad you are feeling somewhat better. Will be interested in hearing what your specialist has to say on thursday about the swelling in your legs. I just went throught a bout of that myself and still have the swelling. The rheumatologist told me I have livedo reticularus , raynauds in my feet and scleroderma changes(thickening) in my ankles.

Good luck with getting resolution with some of the problems concerning your son.

Keep us updated.

A happy heart is good medicine.

#5 razz


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Posted 16 September 2008 - 02:51 AM


Glad you're able to post and update us even though you're feeling tired. You're a good mom looking out for your son and making sure he's in the right unit.

I experience swelling in my ankles once in a while. Since I have flat feet and I have a hard time finding comfortable shoes, I wonder if this causes my ankles to swell. When I switch to my house slippers and put my feet up, the swelling usually goes away.

I met someone the other day at a yard sale who recognized my condition. This was the first time someone came up to me and said "You have scleroderma don't you." I was actually surprised and impressed at the same time. This woman's younger sister was diagnosed in the 70's at the age of 20 when various treatments weren't available. She told me how her sister suffered but their whole family came together to help her. It was nice talking to someone who was familiar with scleroderma.

I've always wondered, but as far as I know I don't have any relatives with scleroderma or an autoimmune disease.

You have a great approach by not letting this condition rule your life! Keep up your positive outlook!

Live well, Laugh often, Love much

#6 Peggy


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Posted 16 September 2008 - 10:12 AM

Welcome back. I hope you find out a wealth of information from your cousin to compare with. It's always nice to hear from someone else experiencing what you are on how they are doing and what symptoms and problems they are having. I wish you all the luck with your son. I can't imagine what a plate full you have to deal with. I'm sure it takes a lot out of you especially with dealing with this disease on top of it. I hope you find out about your swelling. I had terrible swelling in my ankles where I couldn't get my shoes on. They were so big and tight it was unbelievable. This continued for a couple of weeks and then disappeared. Good luck at your appointment.

Warm hugs,