Saturday, April 7, 2012

Unite @ Nite

Busy busy busy. I have so many things in mind to do. So many projects I want to start. You should see my notebooks and laptop bag. Filled with notes and ideas and topics etc. I'm sure half of them are repeated ideas. Every time I organize them, I start it all over again. I will get to them. (one day.)

So on top of all of the things already listed...I have registed for the Chiari & Syringomyelia Foundation's Unite @ Nite walk in June. They have a few site locations listed. If there isn't a site located near you, there is an option for a Solo Walk around your neighborhood (or whereever).
There isn't a walk near me so I signed up for the Solo Walk.

I have created a team for anyone interested in joining. You can solo walk anywhere and still join. If you'd like to register, join or sponsor my team click: Team Chiari-Life
If you'd like to help click to donate Alicia's Page

My personal goal is to raise $100.00
My team goal is to raise $500.00

Walk Details:
"unite@night will be a one mile casual evening walk, in various locations around the country, during the month of June in 2012. This walk will bring together people who are suffering with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos, hydrocephalus, intracranial hypertension, dysautonomia, autism, and related disorders.unite@night will support CSF Chapters to provide education and increase awareness while funding research projects that can potentially find answers to help those who are fighting these disorders.
**Raise $25 and receive an illuminated balloon**
**Raise $50 or more and receive a unite@night t-shirt and an illuminated balloon**
 To register visit

The latest Conquer Chiari Newsletter is out.
You can find the whole newsletter here: Issue March 2012

Ray's Corner was interesting.
Dr. Ray D'Alonzo wrote on Staying out of the Waste Basket. Apparently there are conditions/disorders and such that physicians call waste basket syndromes. Basically what that means is a patient comes in with a vague list of symptoms that could be caused by a number of things. In that case it is difficult for the physician to determine the correct treatment so the patient ends up on antidepressants or pain killers and “tossed into the waste basket”.

That explains why so many Chiarians are "tossed" to another doctor to deal with symptoms and pain or even diagnosis. You go into your family doctors for headache/head pain problems.. Really it could be caused by anything. First thing that is usually done is medicine for migraines/headaches. Not an automatic MRI or testing.

In the write up, he also talks about how many Chiarians are diagnosed with multiple conditions. Whether it be depression, Chronic Fatigue Syndrome, or something else. The chances are pretty slim to have One and the other as statistics go. I believe he means that you could be diagnosed with Condition A and Condition B where both can cause the same symptoms. You may have been told by the same or different doctors you have both A & B. Where maybe you only have A but you can't really see if you have B as their symptoms are the same. (Did that make any sense?) It may be best to go to a Chiari specialist (which is a good idea one way or another IMO) who has dealt with Chiari patients constantly over a period of time. This person may be able to differentiate between Condition A & B.

It is something to think about. Definitely read his whole article through. The link can be found in the newsletter above!
Before I go....I hope everyone has a safe and Happy Easter!!

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PS. April's Chiari Carnival will be out at the end of the month!