YFChoice

Thanks for the welcome

11 posts in this topic

Thanks for the welcome. Like I stated in the fibro post, I have had SD and lupus for 26 years, about 25.5 years longer than the doctors gave me. I am 52 and I tell people I am glad I have SD..... cause it: 1) allowed me to grow and become strong as a person, probably more than if I didn't have it, and 2) I met my 2nd wife/soulmate at a meeting. We married and will celebrate 10 years this summer. She has had SD for 15 years.

 

As an avid outdoorsman, I refused to let a disease stop me. I still ski, snowshoe, hike our mountains and ride a bicycle long distances. Of course, my recovery time is a lot longer but the joy of "doing" and challenging my body and mind is, as the commercial goes, priceless. My wife also skis and golfs. We both love watching our grandsons (3 and 1). I'm an avid gardener and just dug up more of my backyard to raise fresh veggies.

 

I am a massage therapist, having taken a retirement from the postal service. It's great cause I work my own hours and haven't used an alarm clock since 2000. My wife is in the scrapbook industry and is her own boss.

 

I've given talks to post offices all over about SD. I've done TV, radio, newspapers, magazines. I once rode a bicycle from Houston TX to Dearborn MI as a PR campaign. I just found out about this forum and thought I'd join in.

 

I have lots of experience with this illness and hope I can shed a little of how to live with the ups and downs. After surviving a heart attack, chemo tx, getting hit by a car while riding my bike (twice.....definitely not SD related), bad first marriage/divorce........I can tell you that there is a difference in surviving scleroderma and LIVING with scleroderma.

 

Sorry this is so long. Hope this lets you know a little about us.......


~ You have to think anyway.....you might as well think big

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YFChoice,

Welcome to the sclero forums. I am glad that you and your wife have joined our group. I hope we can learn from some of your experiences. I also hope our group has much to offer you and your wife. We have a great medical section to keep you up to date in anything new that is going on with Scleroderma and other autoimmune diseases. We hope to hear from you often.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Choice,

 

Thanks for telling us more about you. Wow! You have done a lot. I am amazed that you still do all that you do. I miss skiing SO much. Considered making it a career when I was but a young, foolish teenager some....25 years ago...

 

Do you suffer with Raynaud's? How do you and your wife manage the cold when skiing?

 

Glad you have joined us. Sounds like we can learn a lot from you.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi YF Choice, Welcome to Sclero Forums. I have diffuse sclero, raynauds and some of the other things that go along with it. I love to garden also and just planted my first tomato plants yesterday. My wife (BMW) has just gotten into scrapbooking. I think she's hooked. With this disease I have a hard time staying "up". Sounds like you've figured out how to not let it get you down. Keep posting and give us all some tips on how to do it. Thanks and welcome to the forums. Birdman

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Thanks for the good comments everyone..........

 

Barefut, we actually both suffer from Raynaud's. So as to the skiing and snowshoeing, it gives us a good reason to get the best stuff to keep us warm. I snowshoe with my neighbors so I'm prepared to go out in any weather. I admit I am exhausted at the end of a 5 hour trip, but there's something to be said about walking thru the trees in perfect, not yet tracked snow and seeing a moose.......or sitting at the top of a mountain eating lunch with the sun on your face, knowing everyone else is working. The quiet is almost zen like. My wife does ski and we only go when the temps are reasonable and the sun is out. Since we live in the Salt Lake area (I moved here from Texas) we have snow 5-6 months out of the year in the mountains and it would be a shame to waste it.

 

Birdman, I'm jealous about putting in tomatoes already. I started from seed this year and they are just showing true leaves. My warm weather veggies won't go in until the end of May. Right now, I do have broccoli, cauliflower, brussel sprouts, sugar snap peas, onions, garlic and potatoes in the ground. Can't wait for the rest of to go in. My wife designs scrapbooking papers, teaches classes and works in a scrapbook store 5 minutes from home. We have 2 rooms in our house devoted to her work.

 

This post is too long........I like to talk.......but I'll let you know how I stay so upbeat. During one of my chemo tx, I sat across from a person who was also getting a chemo tx. This person was upbeat and had the nurses going with her outgoing attitude. Now I'm a positive person anyway, but this chemo was getting to be too much. I had already gone thru 2 rounds and knew what I would feel like for the next couple of days. So I wasn't looking forward to it and I was kinda down. But after spending a few hours in the same room with this other person, I realized I had nothing to complain about. I was still alive. I had lived a pretty good life so far, no major complaints. And, life could actually have been worse. Since then, I've tried to remember the lessons I learned that day about 8 years ago............from an 8 year old little girl with cancer. So now, when I wake up and am hurting (every day), I'm just glad to be around to feel it.


~ You have to think anyway.....you might as well think big

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YFChoice, Hey its Sam, how are you doing? Glad to see you posting on here. You will meet lots of great people on here I have belong to this group for a really long time. Nice to see you posting on a board again. Take care, Sam


Sam

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Choice, that last line was a powerful statement. I've always been a pretty upbeat person, but living with Sclero has brought a new meaning and purpose to my life. I must admit, when I first became a member here, I got depressed reading many of the posts. I had not experienced some of the health issues and I couldn't handle reading them. I got spooked :blink: and would literally sit and cry thinking I was "doomed". However, I wanted to know more about the extent of this illness and I realized that I learned more here than anywhere else.

 

Since that time, I decided I could either have a regular pity party or be greatful that I can still do some of the things I want to do (in moderation of course). I realized I was blessed to get up and walk, talk as well as spend time with my family and friends. I am also still working full time. Coming to this site means much more to me now. I no longer look at it as a facet of my fate, but as a support base with people who care and support each other. Sharing experiences helps me get through the challenges and know that I'm not alone in this Sclero journey. Occasionally on my really "bad" days, I still have a few small pity parties (I think I'm entitled :lol:) but they don't last long at all.

 

I thank you for your positive outlook and advice!


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

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YFChoice:

 

You sound like a terrific, fun couple. Such a positive attitude :)

 

Welcome aboard and know you'll find many friends on this site.


Tru

 

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

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Hi YF choice,

 

I tend to stay positive, but definitely I need to learn from you how to improve further. I moved from Chicago to San Francisco, primarily for ajob, but secondary reason was to avoid Chicago cold. I hope you will post more often.


Kind regards,

 

Kamlesh

 

 

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Hello and welcome to our forum family!

 

:) Bunky

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