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Sharonvandee

Hubby Takes A Sneak Peak

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As I watched the Tv tonight, Hubby was surfing the net and relaxing, when I got up to make a drink I saw that he was surfing the Sclero.Org site.

 

When I asked about it intitially he said very little, but eventually he told me that after all the positive things I had gained from the site and forum that he was just looking for some of his own answers as my sudden deteriation over the past few months is worrying.

 

I often try to hide alot of this from him but we are getting the point where this is impossible.

 

 

So a big thank you to all the people that make this site possible, and to all the people who post and reply, this site is for us one of the only sources of support that we have. We dont know how we would get through some of this with out you.

 

An extra big thanks to Jennifer who told me about the site through myspace


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

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Sharon,

I'm so glad to see that your husband is getting involved and educated about scleroderma. I have found through my experience that it's a partnership. If the spouse isn't involved and you have to fight this alone, it's harder in so many ways. I hope he continues to surf and at times, it's good for to two of you to surf together in finding an answer.

 

So what are you and your doctors doing about your sudden change? Is there a game plan? Your sudden deterioration needs to be slowed down before it gets out of hand. That's one major thing I've discovered - you need to catch and treat things quickly. I hope you're getting some good treatment.

 

Big Hugs to both you and the hubby,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Janey

 

I am off to DR again today but the best treatment can't and won't come till I get to Melbourne in 11 days time and counting. The lady I am seeing there is top of her field in this country so I am hoping she will help with the lung probs and the stomach bleeding and other GI stuff.

 

The specialist that was looking after all this decided to go away for 2 mths so I am on the back burner and my general practitioner the only other person in my area that know even a little about scleorderma is going overseas for 5 mths so I will have to find a new general practitioner and go through the re education stuff again.

 

Last time my general practitioner went away her locum told me all my problems where because of anxiety and he didn't believe I had scleroderma as I had no REAL skin involvment, it can be so frustrating and that is why hubby has started looking I think he can see that this may be a battle till we get a managment plan.


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

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It is great that your hubby is getting involved in ways that can help you both to understand and cope. Janey is right about it being a partnership. As you have found, the partnership has to expand to include your team of medical advisors. At least with those, if you get one that doesn't work out, it is a lot easier to find a new one! :) I am keeping positive thoughts for you and looking forward to hearing how your trip to Melbourne works out.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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