susieq40

Seattle Here I come!

8 posts in this topic

Hey everyone...I am going to Seattle to the Virgina Mason Hospital to talk to a doctor that deals with the scleroderma a lot more than here in Montana. Hopefully He can give me a little more info on my disease and answer some questions.. I know that I've got my Pulminologist opinion of my lung disease, and also the RA's opinion and confirmed blood tests. I'm hoping I won't feel so confused. I feel like I've been in a fog since the diagnosis, and everything I've read on the internet makes me feel hopeless...But I know after reading some of your blogs..there is hope, and you all have made me feel so much better. My life just has felt so crazy since I got so sick in May, and it seemed like my life just changed before my eyes. Even though the doctor's say I've had this for years and years...The lung part of the disease, has made this very real. It's so hard to keep up with everyday things now. I'm getting a lot of support from friends and family. My sister is going with me to Seattle, and I've arranged for childcare...Now hopefully I can focus on myself for the next 3 days...I'll let you all know how it goes. My thoughts are with everyone that has this disease. Love to all

 

susieq

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susieq,

 

What a coups, going to see a Virgina Mason Hospital doctor! I am really glad to read that your sister will be accompanying you to afford you another pair of ears! Hopefully, you will get some printed information so you can comb over it in your leisure, too!

 

I can totally relate to feeling as though in a fog, upon hearing the diagnoses, which happened to be the first time I had even heard of these diseases...when I was diagnosed!

 

I'm anxious for you to see this doctor and hopefully you gain more insight as to what can be done to help you.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Susie

 

That's fantastic news, there's nothing like being treated by the best. Do let us know how it goes and take care of yourself.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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susieq,

 

I am glad you have an appointment and are excited about your visit. My thoughts are with you while you are seeking additional answers. Make a list of all your questions and have your sister write the answers down for you. Having someone with me helps me tremendously when I visit my sclero specialist.

 

Keep us posted!


I may have Scleroderma, but Scleroderma doesn't have me!

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Hi SusieQ,I'm delighted that you'll be going to a scleroderma expert center. I hope your appointment goes well. I'll be thinking of you and sending best wishes your way.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Good luck Suzieq....we'll be interested to hear how you make out...I'm sure your sister will take good notes for you!


Sending good wishes your way!

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Susieq,

Good luck with your appointment! I'm glad you have decided to go and see an expert. You may feel overwhelmed with all of the information but at least you be correctly informed!

Please keep us posted.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Suzieq,

 

Best wishes with your quest for answers! I live in the burbs of Seattle actually. Would love to know who you found and how it all goes. I too am very confused and not terribly satisfied with my RA. He sees me every other month and I fear he just doesn't tell me anything because he does not wish to upset me. He always asks if I have questions and if I have been researching online. When I do ask a question he just gives me a dumb look and a sight nod or shake of his head.

 

I'm sure your sister will be a great help to you during your appt. Take care and enjoy Seattle. Oh yeah, bring gloves! The weather has turn nasty again.... <_<

 

Connie

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