Today is World Scleroderma day...Wayzs Tori Anderson and her friends have worked to make the 4 state area aware of this little known but terrible disease. We are all proud of our success in the past 3 years but what we really all want is a cure. There have been 3 Walks and we have enjoyed every single one of them because of the people that have joined us.and it is just a nice afternoon together. But here is the downer each time there has been some one not come back because they couldnt. The Systemic version of the disease wreaks havoc daily until youre gone. I never want to mention it because I prefer to smile a lot but today I did. I personally am dedicated to just one charity right now.but we need your help too. There is hope as the research center has seen positive developments in stabilizing fibrosis of the lungs a believed key to a cure. Please join us September 14th this year. Our walk is literally one lap so just about everyone can join with us. A Facebook friend from Georgia has been through a lot lately and is sweet person with a good attitude suffering from scleroderma. Today she expressed her thoughts very well in her post that I copied with her permission below. Brotha Bill Diane Begley wrote So If your reading this...you have seen what I went through with my hand not long ago so you have heard of Scleroderma. You have seen what it does to us that are suffering from it. I have been feeling rather poorly and quite honestly I am not doing very well right now. I get very weak and I stumble even trying to stand still. My lungs are up to something...I have trouble getting enough air, could very well be possible its time for oxygen for me, Possible PH. (likely) I have problems with walking any distance, without horrid pain, and weakness. I have had several surgerys to remove scar tissue, that is like a piece of gum rubbed between your hands and them pulled apart and is all stringy. That stuff is bonding all of my insides together. I am pretty sure I am due for that surgery again. I didnt know the first time I had it done and it was full of scar tissues and never had any previous surgerys. Scleroderma was the cause all along. Digestive problems and my esophagus does not even constrict when I swallow, and after swallowing...the little flapper that closes to keep your food down.......mine never closes. Ha no bending over after eating! And I have to sleep elevated. My dr said said she approves a wheelchair of some sort. I am not telling you this to feel bad for me, Today is World Scleroderma Day 2014 and I am sharing this so you will know why what this does that is not seen, I forgot to tell you about brain fog. That is no joke it is horrible! I used to be the spelling police and now I cant spell to save myself some days! I have several witnesses to this problem too, lol. This is why I am always on here. I am not able to do much and I feel alot better being on here and entertaining all of you in one way or another. And also helping all the others who suffer the same. I have always believed in laughter being the best medicine and probably will till the end, Just yesterday at the water park floating the lazy river this woman bumped into me and I just said thats ok I just didnt want to get wet! She busted out LOL, I pull the same tricks on my drs and nurses. Anyway I can make myself not look sick and thats what I prefer so to look at me you will see none of the things I have told you about. We do get a small mouth it can and has gotten so small that people are no longer able to eat and have to have a feeding tube. I recognize some because of their mouth as mine is getting tight and hard to open very far. I dont even want to mention that it is horrid on our teeth! It will reshape your whole mouth and face. Ok I am done now. I wanted to share something that you could learn about Scleroderma and what it does On this day, and this is my way of raising awareness and you heard it from the horses mouth! (no pun intended! lol) Thanks for taking the time to read this and learn about terrible disease that is killing people daily. (right now 1 is in ICU not expected to make it and she has 1 month old twins.) We chased one down for 3 hrs last night as we feared she just couldnt take anymore and had given up. (she is ok) Also I want to thank you all for your support and prayers and everything you do to show me support. It means the world to me. ....love.
Posted on: Sun, 29 Jun 2014 18:46:28 +0000
Trending Topics
Recently Viewed Topics
© 2015