Wishes and Rainbows, and more NCC / NSM

[Guest guest]

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,   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.