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barefut

Longevity With Scleroderma

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I went to my kindergartener's parent - teacher conference today. We had some extra time at the end and I told her how much I loved this age of kids and how much I missed my preschool which led us into talking about my job hunting which led to why I had to turn down the job with the 0 - 3 year olds.

 

When I mentioned to her I was diagnosed with scleroderma as I was applying to graduate school to earn my masters in Early Childhood Education, she didn't bat an eye. I watched her face closely as I gave my scripted, brief synopsis of scleroderma. I finally had to ask, (since she didn't), "have you heard of scleroderma?" She just nodded understandingly and said, "Scleroderma can be scary. My mother has sceroderma." I asked her how old her mother is and she said 82! I said, "I'm glad I asked. That gives me hope."

 

My son's teacher is such a sweet lady! She told me to not give up my dream of teaching and even though its harder to pursue our dreams as we get older, and especially with sclero, to not give up on it, just chip away at it a little at a time.

 

Her mother is doing well. I didn't ask which type of sclero she has or how long ago she was diagnosed, but 82 and doing well!

 

So there y'all!

Sleep on that.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Wow that is great!

 

I will share with you what my mentor said to me, when I wasn't sure if I wanted to go back for my BS and then my Masters. She said "Why not? The time is going to pass by anyway, and if you start taking classes now, then you're just one step closer to it next time you analyze time" Took me 6 years, but I did it - all Mastered up! lol :) It really does open so many more doors for you.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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I was told by my last rheumatologist that she's had patients into the 80's as well. She handed me a tissue and said she felt I was one.


Tru

 

It is what it is...........

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I was finishing my bachelors degree when my weird symptoms started. A masters program in counseling was being offered this year at the branch where I attend. Usually this program is only offered at a campus over an hour away. This program will only be available at my local campus now so I had to make a quick choice on whether or not to apply. I went ahead and applied and thought "I will just take it as it comes." I was admitted and I have just finished my first quarter. If I dont keep going, Im afraid I will become a victim of depression. My motivating phrase is "I will make it to the moon if I have to crawl." That can be taken figuratively or literally. Go for what you want. We may have to accomplish things a little slower, but just keep going!!!!!!!!! Also, a masters degree will allow us more choices in employment and also more opportunities for part-time with great pay.

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You are so right Rachelle.

 

My graduate program is offered at a location only 2 miles from my home, as a satellite course with lectures via video all the way from Old Dominion College in Virginia (I'm in WA). So, I thought how could I not follow my dream when it was being practically dumped into my lap?

 

The only problem is, in order to qualify for financial aid, I have to take a full time course load. <_< . I may still get to it someday though. Where there's a will there's a way. :)


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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My Mother-In-Law is 88 years old. She was diagnosed with sclero about 10 years ago. I remember reading about it thinking this doesn't sound good. Litttle did I know I would also be dxed with the disease! Anyway, she lives in a nursing home now and is in a wheelchair. Her short term memory is gone but she can play games and is able to create words and count points. All in all she is doing pretty well. My best friends mother also has sclero, she is well into her 80's as well. She lives in assisted care and has memory issues as well but other wise does pretty well. She walks with a walker.

 

I wonder if the sclero causes the memory problems or whether that just comes with old age......


ISN Artist

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What a great teacher your kindergartener must be... she truly has compassion, it sounds like. I'm so glad she was encouraging you to follow your dream, Barefut.

 

Yes, I have a friend, well into her 70s... who also has Scleroderma. Her daughter and I were best friends through high school (still are, as a matter of fact)! I never knew until after I got diagnosed... I never knew about Sclero at all prior.

 

Enjoy the weekend, everyone!

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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miocean:

 

Three cases of sclero in such short proximity. Why do they constantly say how rare it is, when proof in case is here on this website and through it's posts, that there are more of us than is being counted as a consensus?


Tru

 

It is what it is...........

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I am so glad to read this story...thanks to all of you! I know that there is a huge life ahead of me/us, why shouldn't we live it, even if it does take us a little longer. :)


*WestCoast*

 

********

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Tru,

Maybe most cases progress as quickly as mine.. I was diagnosed a year ago, 6 months ago I was put on oxygen because my lungs have progressed to that of a 84 year old. My lungs are too far gone to participate in SCOT. I'm looking into other treatment options. My husband asked me what if those treatment options don't pan out? Then what? I don't know... I want dearly to think about living till I'm 80 but there are days when it's hard to see 6 months to a year and it's even harder when those you love ask hard questions that have no answer.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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