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Bird Lady

Back From Dr

9 posts in this topic

We are just home from Duke and it looks like Birdman is ready for the SCOT study. The dr will start cytoxan right away and get everything ready for the trial. Hopefully we'll be in within a few months. Glad something is going to happen but a little apprehensive.

Birmans wife


Hugs for All,

 

Julie (Bird Lady)

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Congratulations,

 

I will be there at Duke from March through likely the beginning of may. If your husband wishes to discuss the SCOT trial or just feels like talking, have him call me. If you e-mail me privately I will be happy to give contact information. bEST OF LUCK! Both of you will be in my thoughts.

 

Dave

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It's so good to hear that things are finally moving. Please keep us informed of what's happening and how the Birdman is doing. You'll both be in our thoughts.

Big Hugs,


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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HI!

 

That is great news! :rolleyes: Please make sure you keep us posted as he moves through the stages of getting approved for the study and entering into it!

 

Warm wishes,

Heidi

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Wow, Birdman's Wife,

 

That's got to feel like oh, my ######. Now everything is moving too fast--even though yesterday we felt like it would never get here.

 

I'm very happy for Birdman. I wish him all the best. I know you'll keep us up to date on his progress. And please let us know what it's like for you as well. We realize that our diseases have profound effects on those who love us. It would be a great opportunity, a privilege, for us to be able to see it from your perspective.

 

All my best to you both.

 

xoxo emmie

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Thank you all for such kind words. Emmie, mercy I don't really know how to respond. It is so terribly hard to watch someone we care so much for, to be going through this awful desease. We (Loved ones and spouses) run the gammet on emotions, why is this happening, why wasn't it me instead, what can I do, I get mad then I get sad. In the beginning Birdman wouldn't even talk about Scleroderma he would get angry everytime I tried to talk about it. Then I found this website and it has been a life saver to say the least. I would log on and read and read, down loaded tons of material. I have learned to so much and everyone has welcomed me and answered all of my questions. I have been able to understand what was going on even to tell him what was going on!!Much to his suprise!! Anyway after this last post I mentioned it to him and much to my suprise he logged on and was quite touched by the kind words, and even is asking me questions !!! Go figure!!! Thanks for letting me vent and share the other side !!!! You are all in my thoughts

Birdmans Wife


Hugs for All,

 

Julie (Bird Lady)

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Thanks so much, Birdman's Wife, for the insight. I know I would hate it if it was my husband or one of my kids. I worry about my daughters; one of them already has thyroid disease. I am actually glad I am the one who has all the autoimmune stuff so far. It sounds like the emotional roller coaster is much the same for you as it is for us: up then down; mad then sad; talk about it, don't talk about it.

 

For some reason I have never asked the question "why?" For me, there are no answers, at least none that make sense in this life, to questions that big. Any answers just don't seem to make any sense. Maybe at some point in "time", an answer will come. Who knows....?

 

One thing I do that does drive my husband nuts is not tell him "stuff". By that I mean when something new pops up, I tend to keep it to myself. I want to see if it goes away or settles down or ..... I don't like to worry him unnecessarily. But then when it comes out and he finds it's been going on for 6 or 8 weeks, he feels like I've been shutting him out. I'm trying to work on that.

 

I also don't like to ask for help a lot. He doesn't understand my answer that "it's a reminder to me that I can't do things I used to be able to do or want to do by myself". So for me it's sometimes worth the risk of figuring out a way to try to do it myself or else stuff just doesn't get done.

 

And then there are the times I think he should read my mind and "see" that I am really feeling bad and hurting a lot. So why isn't he just taking over and doing everything for me. Why should I have to ask?? Of course that makes me crabby and even angry. Naturally, he is clueless!

I'm also trying to work on that! :-)

 

Just thought I'd give you an insight into how I work. Dont know if it's the same for a male with Ssc.

 

I just wish you total success on the journey ahead! I know you and Birdman are a great team and will fly high together.

 

xoxo emmie

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