I'm new here
Posted 03 November 2009 - 09:21 AM
I'm new here also. I live in Maryland and try to winter in Florida when possible. I have Systemic Scleroderma.
I had chemo three years ago to stop the disease and it worked for six months. It stays active but not progressing as fast as before. I now have bladder problems because of the chemo. It keeps life interesting to see what will happen next. I could use a smile during the day as I can no longer work.
Posted 03 November 2009 - 10:26 AM
Did you know we have a daytime chat on Wednesdays? It's at 2pm Eastern Standard Time. It's easy to join in the chat and it's lots of fun. Also check out the Fun and Friendship Forum, it's great. And, she says, bouncing up and down , have a look at the Blogs! I go back and read some of the blogs over and over again - better than a lot that's on the telly.
I hope you'll post often and let us get to know you.
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network
Posted 03 November 2009 - 07:46 PM
I didn't know that chemo was sometimes prescribed for scleroderma. That must've really knocked you about.
For a smile, have you tried a humorous book? I'm reading one now, you can send me a PM (private message) for the title (click the envelope that is underneath my avatar on the forum.) I've never laughed so hard while reading a book. I recommend you don't read it while in the doctor's waiting room or you might receive some odd looks when chuckling out loud.
Life is better with Jeeves and Wooster
Posted 04 November 2009 - 08:36 AM
Welcome to Sclero Forums! I'm sorry you have systemic scleroderma but you've certainly come to the right place for that. Now, as for needing a laugh, I couldn't help but notice Jeannie's timely use of our little frog jumping up and down emoticon.
My husband, Gene, who is ISN Vice President, is awaiting a lung transplant. Everyone always asks when his surgery is scheduled for; but it is one of those things where you have to wait until a matched donor passes away and the person with the highest score on the UNOS transplant list gets the lung. So we are on call 24 hours a day until whenever that is.
To make life more exciting in the meantime, we make a point of doing something new and different every single day. That might sound easy but wait until you try it, after a few months, my goodness, the crazy things you resort to as you've worn out all the easy ones.
So, on Monday, we went to a new (for us) Thai restaurant and Gene had stir-fried frog legs (his first ever). Sorry, this is not meant to offend vegans or amphibean rights activists or the weak stomached. Anyway, he was very surprised at how tasty the dish was and, to his enormous surprise, he relished every bit of it.
Later that day, I made the mistake of asking him how he was feeling. He replied, "I'm feeling a bit jumpy."
My husband is very handsome, so I figured, my prince was turning into a frog. Thus, I decided to change my name to Lily.
So I could invite him over to my pad!
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.
Posted 04 November 2009 - 08:57 AM
Welcome to the forum and you are most certainly in the right place if you want a laugh! Yes you are absolutely right life with sclero is anything but boring! You never know what your going to get and when, pity we can't put in requests. I no longer work either because of sclero and have been at home for just over 2 years now. Being involved with this forum and the UK Scleroderma Society has been worth more than I could put into words. Check out the blogs, as Jeannie suggested, my favourite one is Barefut's.
Charliehorse, it's called cyclophosphamide and can be used for treating pulmonary fibrosis. As Nancy has said it can be hard on the bladder.
Shelley, don't give up the day job!
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 04 November 2009 - 10:07 AM
Posted 04 November 2009 - 10:09 AM
Another problem I have is blurry vision. It comes and goes. I will try the humorous books when I can. Thanks.
Posted 04 November 2009 - 10:11 AM
Posted 04 November 2009 - 10:12 AM
Welcome, welcome to our big family! Hoping you feel as comfortable posting as we do.
Thank you for sharing and we look forward to hearing from you often!
Posted 04 November 2009 - 12:52 PM
Just wanted to say hello and welcome you too.....these gals already gave me another laugh....so you must just know that you've come to the right place!
Posted 04 November 2009 - 06:03 PM
Welcome to the Sclero Forums. I'm so very glad that you've joined us. You will find a lot of information, support and friendship here. I look forward to knowing you better my friend.