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Johns Hopkins Scleroderma Center in Baltimore MD


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#1 sandra

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Posted 16 September 2009 - 03:15 AM

B) Hello from New Westminster, British Columbia. Its been 2 years since diagnosis Scleroderma, Watermelon Stomach - Raynauds - Sjogrens - Digestive Motility - Psuedo Obstructions and lastley, Mal Absorption. Currently waiting for biopsies for slow growing red patches on both eyelids and upper lip and inner mouth.I have had several "Argon Lasor" treatments to stop the bleeding in my stomach, put to sleep each treatment another one booked in November.

Last month I was in Baltimore MD USA for 9 nights at "Johns Hopkins" Scleroderma center, to get as much medical advice from Dr. Fredrick Wigley who researches and is dedicated to find a cure for Scleroderma. There he diagnosed Sjogrens and reafirmed 100% Scleroderma. My team of Specialists in Vancouver are top notch also at St. Pauls Hospital Scleroderma Clinic (Dr. James Dunne), I went to Dr. Wigley in hopes that he had or was close to having a Miracle solution for this weird thing called Scleroderma. I came back with a new look and a new attitude towards dealing with Scleroderma, it was an expensive lesson, that I am passing on to you, Scleroderma can throw you a different hurdle now & then (sometimes daily!), try to stay positive always, because the next day could be better. Stay away from ALL negative feedback, and people who are not doctors who want to always advise you "why don't you try..." and the "You shouldn't do this or thats"
Just politely respond, " I know you are trying to help me, so please READ everything you can find on Scleroderma to learn this disease with me." Stay Positive, stay Happy, get Comfy, because there is a better day ahead, AVOID NEGATIVES at all cost, Stress and Scleroderma causes flare-ups, keep positive for your own health. Dr. Wigley's advice is don't let stress and negatives control your health, that's the fast road to disaster! In my worst days, I now focus on the positive things in my life to look forward to. You can do it!

I am LIVING and accepting Scleroderma...

Positive wishes for all of us,

Sandra

#2 Shelley Ensz

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Posted 16 September 2009 - 03:21 PM

Hello Sandra,

Welcome to Sclero Forums! I'm sorry you have so many complications with scleroderma but glad that you are getting excellent care.

You are fortunate to have received good advice regarding a positive attitude, and not listening to people who don't know what they are talking about.

Part of a positive attitude, I believe, involves learning all the facts of a situation and then developing an attitude that is even bigger than the challenge, just as you are doing. It is so valuable to see living examples of people in worse predicaments, that are coping well emotionally with whatever they are faced with. It gives us all something to emulate, don't you think?
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.

#3 Elizabeth28

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Posted 17 September 2009 - 01:35 AM

Hello,

Your advice struck home for me; I am Scl-70 positive but asymptomatic. I still live in a kind of limbo regarding scleroderma though, and have realized that my mind-set is as important as anything else in terms of how I handle the ambiguity and fear. I've also become more aware of the importance of 'boundaries' in telling family members and friends what I am or am not willing to talk about. It's saved from many conversations that would have, I'm sure, only served to intensify my fear or anxiety.

I'm also in Canada; was your trip to Johns Hopkins government-funded?

Best wishes,
Elizabeth

#4 sandra

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Posted 17 September 2009 - 03:42 AM

Good morning Shelley,

Positive attitude is the only true way to keep the many complications with this disease in check emotionally, if I get overwhelmed and upset at all this disease throws me, it will cause Stress and we know Scleroderma feeds like a beast from stress!

Johns Hopkins taught me "How NOT to feed the BEAST", starve it, I now "Only" deal with what "each day" throws me, and not the whole ball of wax as a whole.

The Beast will "Rent" too much space in my mind otherwise, and the price is NOT worth it! This lesson I have learned is really working, I have control now, and I am in charge, and its so much easier to accept my new way to live life to the "fullest".

I am so happy to hear from you. My wish for you today is to be warm and comfy!

Your new friend Sandra

#5 sandra

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Posted 17 September 2009 - 06:25 AM

Goodmorning Elizabeth,

Nice to meet you, I am keeping my fingers crossed for you and a dagnosis so you can turn to the next page in your life, we all know and understand 100% where you are at right now in your life, waiting.. wondering..what if's.. and hope not's.

Let me assure you with a little comforting advice, once you have a "real firm diagnosis", you will learn quickly how to adjust and accept and pick yourself up and carry on living with the help and support of this website. Please Elizabeth try not to go through the "Am I going to die" state that I put myself through after reading all the sad results, I scared myself and my darling husband half to death.

If only the world would POST the positive outcomes where people have lived for 50 years with Scleroderma! A lot of people can live full long lives, and there are many speed bumps and downfalls you might have to cross, stay positive, go through what it throws you, and carry on and don't look back, this is just my way of staying comfortable and stress free, I have it , I can't change it, I have accepted it, I am learning to LIVE with it, I am not as diplomatic as most people, I say it direct as I have experienced. Elizabeth, I wish I could grab you and hold you and let you have your last cry on my shoulder, because I am your Buddy now, and you are going to learn to live life the best you can girl! Start from today, We are all here anytime for you - you are NOT alone Sweetie. Stick with the people who support you and avoid the ones who don't.

I live in New Westminster BC and BC Medical sent me to Johns Hopkins in Baltimore Maryland, I am very grateful that they did this for me, it reaffirmed that my care is also top notch right here in Vancouver area, there was no miracle treatment or drug, that was any different than I was receiving right here in Canada. We paid hotel and airfare and meals and car rental so it wasn't cheap by any means. It sure was worth every penny to hear that people can live a long life with Scleroderma, avoid Stress at all cost to not bring on flare-ups! Including people who just plain irritate you, trust me Elizabeth staying positive goes along way... sorry for babbling on and on. Keep in touch, ask questions anytime, I am not a pro yet, we can do this together!

Your new friend Sandra

#6 Elizabeth28

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Posted 17 September 2009 - 09:03 AM

Dear Sandra,

Thank you so much for being there - as a friend - for me. It's also wonderful to connect with someone here in Canada. I'd been afraid, for what I've realized over the past year are 'unjustified' reasons, that I wouldn't have access to the best in scleroderma/rheumatology treatment here in Canada. As you know, we're saturated with U.S.-media here and are always told that care is better south of the border. And for some things, I'm sure it is. But we can't afford to underestimate how profoundly wonderful our system is, too, or that BC Medical supported at least the medical portion of your visit to Johns Hopkins. Hearing this gave me hope that, should I need it, I too would be able to count on the government to help me out.

Does BC Medical cover your pharmaceuticals as well? I'm currently living in the Maritimes, and I know that each province is different about 'catastrophic' medical coverage for drugs. I'm healthy now, with no diagnosis yet, but I'm having to look ahead to whether or not I will need supplementary health insurance for the pharmaceuticals, should I ever need them (as I write this, I'm knocking wood I stay healthy!). My family is out west, though, so it may be worth thinking of returning to live there one day.

Thank you again,
Elizabeth