Guest guest Posted July 14, 2011 Report Share Posted July 14, 2011 Hello All, I hope this finds you all doing as well as possible, and enjoying the summer. It's been quite awhile since I've posted, and I apologize. There has been so much going on with " me " , and once my head gets in the clouds, it's terribly hard to get it back down. First off, there has been a couple changes in " staffing " with Wishes and Rainbows. I'd like you all to Welcome Sherry to our organization ----- she is our new Secretary. Secondly, Brewer had to resign her position as V-President. Her health has taken a turn for the worse, and she's looking at several surgeries heading her way. I'm sure she would appreciate all the well wishes she can get. I think we all know surgery is not always something to look forward to, especially when you've had to under-go so many. But, hopefully they will give her some badly needed relief from her symptoms. a Crammer has agreed to accept the position of V-President, along with her position of Coordinator of Funding Raising and Grants. As volunteers, no one receives any " pay " for their work, and at times, the load can get pretty heavy. I feel extremely fortunate to have these people working with me, struggling to keep Wishes and Rainbows on the map. Although funding is hard to come by these days, we are still doing what we can to help people in need. Speaking of which ---- what a lead in, huh ?? " The Chiari People of PA " group is sponsoring a walk in Sept, and they have chosen to sponsor Wishes and Rainbows this year. I can't begin to express my gratitude to them for all their support over the years --- they have always done special fundraisers for us, and this year, WE will be the receivers of " the BIG one " . For those of you planning on participating in a walk for Chiari, I hope you will consider joining up with them, and help support two causes --- Wishes and Rainbows AND awareness for Chiari. Heaven knows we ALL need more awareness of these conditions. You can go to www.wishesandrainbows.org for all the information . Now, just one more thing ---- I want to thank Kathleen, her moderators, and ALL the leaders of support groups, Â Â for their hard work in keeping US up-to-date, and giving us all a place to go for help and information . No one has any idea what kind of work and dedication to helping people is required in running an organization, unless, of course, you run one. It's not easy. It takes loving and selfless people to do what these people do, in spite of the trouble and grief some people can cause. When I found out I had Chiari in 1991, I had no idea what it was --- I spent 10 years wondering what was going on with me. When I found a support group, I was so excited and relieved --- finally someone knew what was going on with me, but more importantly, I found out I wasn't the only person in the world with these conditions. Support groups are so extremely important --- not only for companionship, but also the up-to-date information; where the specialists are, latest research ---- it is ALL so important. Unfortunately, there is always someone (or several someone's) who have no respect for the work and dedication it takes to help others, and especially to help them help themselves --- making it so much easier for us to research, and make the best determinations for our own situation. If we haven't learned anything else as a Chiarian, we know that no one is the same --- we all have variations of symptoms, and only WE can decide which doc is best for us. That's why the information is made available to us. No one is ever forced into going to one particular doctor, or receiving one particular type of treatment. We've also learned that no matter who we see, our outcome is going to be different than someone elses --- just because that's the way Chiari is. Let's face it, folks, we are stuck with these conditions, and all the money in the world isn't going to get rid of it. My first surgery was done by a " butcher " --- an arrogant NSG that " thought " he knew what he was doing --- strictly because he had done the same surgery on an 18 year old teen, and it was successful. I, on the other hand, was a 39 year old woman, and his arrogance almost cost me my life. This all happened long before computers were in most homes, and information was so easily accessed --- long before I knew I had a choice. Take advantage of these support groups --- help each other, and help yourself by using the information and making your own determinations as to who or what is best for you. For every one of us that has a good opinion about a specific doctor, there will be another that doesn't agree --- and that goes for ALL of them. OK, I'm off my soap-box. Don't intend to offend anyone --- just want people to stop blaming someone else for these conditions. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.