+ Thankful for Technology +

General
1

While I can't say let's all be thankful for the big noggins we have, I just wanted to post something to be thankful for.

Thankful for technology and sites such as this for information and support! I think a lot of times we take advantage of being able to just google something. Or turning to whatever our favorite source or online group is for answers.

Lack of information is scary! Couple of weeks ago a woman from work contacted me because she knew that I had Chiari. Her sister was recently diagnosed and they were clueless on what to do, where to go and if the answers they were being given were normal.

Sure enough she has a 8 in a lot of pain and they told her to see a ENT for the dizziness. They are not internet savy and were not comfortable learning now.

I'm not sure what was more shocking....the internet thing or hearing what the docs told her?

All is good, hooked them up with a Dr whom had experience with Chiari in her area and she is getting the help she needs.

How many others are out there? Lost, confused and hurting?? That part saddens me! However I am thankful for sites such as this and my webmd when I refuse to believe I have a cold! LOL

2

We do!! I remember saying "I have what???" Having to learn about this and then explain it to family, ugh!

Then to face the words of "But you look fine". We defiantly need more awareness

3

Technology is wonderful. I've actually had this diagnosis for 20 years, but all I (and my mom) knew at that time was that 'something' wasn't right in my brain. She just found the old MRI report for me this year, sent it to me, and now all my research has started. I discovered very recently (through Facebook) that a friend of mine at church has an 8 year old who also has CM1. He was diagnosed 6 years ago and she said even then she could hardly find anything out.

4

Jen,

I agree totally. I am an information and research junkie. It makes you wonder how we got along before the internet!! I know...I used to cut stuff out of magazines and have slips of paper everywhere. Oh and Encyclopedia Britanica. LOL

I am grateful for this group of great people and all the information and support we share.

Wendy