Thanks for the welcome
Posted 20 April 2008 - 04:03 PM
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.......
Posted 20 April 2008 - 04:16 PM
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.
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)
Posted 20 April 2008 - 04:33 PM
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.
Posted 21 April 2008 - 09:00 AM
Let me join in as well with a big welcome to the Sclero Forums. I'm really glad you've joined us. You sound like a very upbeat positive person, kudo's to you!
Posted 21 April 2008 - 11:06 AM
Posted 21 April 2008 - 01:30 PM
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.
Posted 21 April 2008 - 01:45 PM
Posted 21 April 2008 - 02:27 PM
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 ) but they don't last long at all.
I thank you for your positive outlook and advice!
Posted 21 April 2008 - 04:55 PM
You sound like a terrific, fun couple. Such a positive attitude
Welcome aboard and know you'll find many friends on this site.
It is what it is...........
Posted 21 April 2008 - 05:40 PM
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.