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Hi everyone, it's time for my biennial check-in. I do these for newer members who are learning to cope with a frightening diagnosis. Let's see, it's been 11 years since I landed at the Center of Excellence where I was diagnosed with systemic sclerosis sine scleroderma (also called limited), pulmonary hypertension, and interstitial lung disease.

 

So how am I after a decade plus of SSc? Great! I've developed supra ventricular tachycardia, had scary few months when my bone marrow was producing very few white blood cells and neutrophils, and the GI issues have all progressed, but on the whole I'd say I'm fantastic. I need more O2 when I go hiking, but bear in mind I live at 5384'/1614m and hike much higher than that. We still travel, although flying with a portable O2 concentrator requires lots of extra time at security and the boarding gate as well as needing to be scrupulous about the airline's paperwork (beware codeshares!). Unfortunately, I still do all my own housework, gardening, firewood lugging, and shopping~

 

Lest I sound like a Pollyanna, no, it's not always easy and some days it's just plain hard. I'm grateful to my doctors and grateful that I've reached 70 in such good shape. I'd like my fellow scleroderma patients to know that it is possible to enjoy life despite this disease. If I had to give advice, I'd say never sit down and always choose the healthy option. Oh yeah, and don't be afraid to argue with your doctors, your relationship needs to be a partnership.

 

I hope you all are still shining examples of courage and compassion.

 

Fondly,

Jeannie McClelland

 

 

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Jeannie, it is absolutely delightful to hear your update, and your ever-sparkling example of living life to the fullest with scleroderma, with courage and compassion, come what may.

 

Congrats on the big 7-0!!!

 

We are all grateful for the enormous contribution of time and caring and expertise that you have given our scleroderma community through the years. Thank you for being a beacon of light for us all...and also for your honesty in saying that some days it's just plain hard. 

 

I know some newbies, especially, tend to think they are doing something wrong as they find many things to be disturbing and not exactly a tiptoe through the tulips experience, learning about scleroderma and learning how to live with it. Just knowing that we all find it hard sometimes is actually quite reassuring, when we are caught up in the middle of another adjustment. 

 

:hug-group:

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Hi Jeannie,

 

It's fantastic to hear from you and I'm so pleased that you're doing well, despite having a few problems to contend with. I think it's so important to live as fully as we can with this bizarre disease and you've certainly proved that it is possible.

 

I do hope the rest of the family are equally happy and well (including your lovely dogs!) and I've thought about you often and am so grateful for the help you gave me when I first joined the ISN.

 

My very fondest wishes to you, 

 

:hug-group:

 

 

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