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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Susannah

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Posted 21 February 2008 - 02:51 PM

Hello All! Ive been reading your posts for a few days now, after finally figuring out how to log in ( im not too flash with the PC), Iv'e even made the odd comment in reply to a few questions , hope that wasn't rude of me. So, I thought I would introduce myself properly! My name is Sue and I live in New Zealand. I've just recently posted my story which you will find amongst the new 2008 stories to get a better idea about me and my illness, which is no different than most of you here. This has been a blessing to me, to find so many just like me and I don't feel so alone. My husband is great though, in fact he is a gift, although he finds it tough at times, its his loyalty and dedication that blows me away as there are so many things I need help with, he is often the only one around to do it. I have 3 beautiful children aged 17, 15 and 12 who do so much to help with very little complaining, I wish I could give more back to them for all they do. I haven't worked for over a year now due to accute anemia, watermelon stomach (GAVE) being my biggest issue at present. I haven't found anyone with this condition so far, so any experience out there would be a blessing to hear about. Anyway, I've gabbled on enough. I've loved reading about you all and the support and encouragement you give to each other. Thanks for listening and I hope we get to know each other better. Rest and peace to you all Susannah x

#2 peanut

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Posted 21 February 2008 - 04:04 PM

Welcome Susannah,
I hope you meet someone who has sclero. We may not be able to meet you in person but we are "here" and here for you when you need us.

Take care,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 mando621

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Posted 22 February 2008 - 02:19 AM

Hi Susannah,

I feel a connection to you even though your half a world away. I also have three teenage daughters, 17, 15, and 13. They help a little, but up until now, I am the one doing everything. I'm still physically able to do stuff, I just get very tired if I overdo it.

I had a grandmother with ALS. I'm not sure if autoimmune is necessarily heraditary, but I worry about passing on problems to my daughters.

Here in Wisconsin I've found a support group on the WEB, they meet the first Saturday of the month, so I won't be able to join them until April. I'm traveling to Texas over the first weekend of March for a business trip.

I'm still working, and I know I push myself too much. By the end of the day, I'm not only bone tired, I hurt. At least I only have a full teaching schedule one semester of the year. Right now I'm really teaching half time which is nice.

My mother says that I have too much stress. She thinks this is the result of too much stress, and you know what, Mom's are right most of the time!! B) I did a research paper a few years ago in completing my masters degree about the relationship between stress and t-cells in Sjogren's disorder since that is what I thought I had. I have all the symptoms of Sjogren's and now you could add symptoms of Scleroderma. I've been a typical Super Woman for years doing everything. Volunteering at school, working, being Girl Scout leader, singing in church choir, on committees, you name it. I'm starting to say NO to things. My husband says it is because I'm depressed. YOU THINK! Oh well, enough of that.

Welcome. I hope you find this site as nice as I have. I just joined too and I have to say this is the friendliest forum I've participated in.

Mando

#4 Susannah

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Posted 22 February 2008 - 05:27 AM

Thank you peanut and mando for your welcomes, it was so nice to hear back from you!
My children had no choice but to help, the second year of this disease had my hands so painful due to the ulcers, they would be hungry and naked by now hehe! My hands get a whole lot better over the summer and Ive taken back alot of the cooking duties. And, yes, I do worry that they will inherit this dreaded illness from me. Everytime they itch or complain of pain esp where there is no outside evidence of it, I panic, I would not wish this upon anyone. Initially, when I found out what I had, all I heard was that it couldn't be passed down, but esp lately have read alot of stories where the children have got it too, it has broken my heart for those mothers. I have faith and believe that everything has a reason and a purpose, but even that one would test me to the limit, I think! I didn't realize how much I would carry for those I love, where I found that I would rather do the suffering than to see them go through anything. Well, I could waffle on a ages, but its 5.05 am and ive been up for over an hour and need to get a bit more sleep. My youngest son is off to camp at 9am today (Saturday here), so want to be up to see him off. He is really excited. He is a doing kind of a kid, so I know he will have a ball. I was just wondering what the time difference is between us, I will look into that! hehe (Just thinking out loud) :lol: Its been so, so nice to meet you and wonderful to talk to lovely people who know what its like. Take care Susannah x

#5 janey

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Posted 22 February 2008 - 05:50 AM

Welcome Susannah!
Thank you so much for sharing your experiences through your personal story. I just read. You've been through A LOT! Thank goodness for the doctor in Christchurch for diagnosing you on the first visit. Eight months from the onset of symptoms isn't too bad. Some people go for years. It sounds like your's was progressing very quickly so the quick diagnosis was imperative.

I'm sorry you have still have so many problems due to your GAVE. Hopefully, you'll be able to get that under control very soon. What was the IV medication they gave you for your Raynaud's? It sure sounds like it did the trick.

Hope you get a nap today after being up at 5 am! Have a great day and keep up the wonderful attitude! We're thrilled you have become part of this virtual family.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#6 Sweet

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Posted 22 February 2008 - 06:12 AM

I just read your story too, wow. It is always so enlightening to dig into someone else's story to see how many similarities there are.

Hang in there!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 debonair susie

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Posted 22 February 2008 - 06:27 AM

Hi Susannah,

I'm really glad you have found this forum... but always :( to read of more who deal withthese kinds of illnesses.

You have done well by your children and I'm so relieved for you, that you have their help when needed.
I haven't read your story yet, but will as soon as I can.
You and yours sound like a wonderful family and I hope that you feel the comfort and support here that so many of us do.

Big Hugs,
Susie
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#8 peanut

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Posted 22 February 2008 - 06:37 AM

Susannah,
Wow you've been through so much. You and I were diagnosed around the same time. It's so interesting that we have the same condition and both fairly severe but entirely different issues, well except for the Raynauds and ulcers. My lungs are ultra bad, but I hope to be better very soon.

hearts,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#9 Susannah

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Posted 23 February 2008 - 05:16 PM

Its Soooo lovely to hear from Janey, Sweet and Debonair Susie, thank you for your thoughts and and best wishes! You know, it blows me away what we are all going through. I believe that we are not put through more than we can handle, so we must be able to handle alot and that our spirits must be strong.

anyway, to answer Janeys question.........the IV drug is called Illoprost (not sure it thats one or two "L's" or not). I still think it is still having an effect even 8 months after first having it, as my fingers still dont flare and go white, thankgoodness. Im due for the next lot in May sometime to get ready for winter. Its a hard drug going into the veins and if it goes in too fast it is painful all over and I got terrible headaches. They dont let it go in any faster than, I think it was 40 mls per hour ( my memory is sketchy). On the first day, they build up to that level, then if it all goes well, carry on the rest of the week at that level. I found 40 mls p/h was too fast and we settled at 30mls p/h, with only mild discomfort, obviously this just takes longer but I still think it was worth it. I spent the whole 5 days as a day patient in a hospital room taking dvd's ( My family gave me a portable dvd player for my birthday for this purpose) and books etc to pass the time, alot of the time I was happy just to nap and rest. Hope I havnt waffled on too long! :unsure: Well...take care all of you, hope this finds your day restful and enjoying something you love!
Susannah x