Source of Support

I woke up without a migraine today!! VICTORY! Although it was a minor victory because my back was still hurting, I was pretty psyched! I had a great day yesterday despite all of the pain and discomfort because I finally got a chance to talk to my dear friend who also has Syringomyelia (SM). He has suffered with this for much longer than I have and had surgery in the nineties to help with a condition that sometimes coexists with SM which is Chiari Malformation (CM). I do not have CM but he and I both have SM. It was wonderful to be able to speak to someone about the symptoms, treatments and frustrations that I have with this bizarre disorder. I realized yesterday that I really need that support. It is very difficult to talk with someone who has not had to deal with this type of pain or strange symptoms that go along with the SM diagnosis. I appreciate his support more than he knows, I believe. So if you’re reading this, THANK YOU!

We discussed something that we both have thought about doing which is going to the American Syringomyelia & Chiari Alliance Project’s (ASAP) annual conference. Last year they had it in Austin, Texas which just happens to be extremely close to where I live; however, I was not diagnosed with this until after the conference took place. The conference changes locations yearly to give an opportunity for others around the country to attend. This year it is in Colorado. That is so far and I really wanted to go but it will cost me a lot of money to attend…money I don’t have thanks to the doctors, ironic isn’t it? At this conference I could have met doctors in this field who are specialized in treating my diagnosis and the people who have also been diagnosed with SM or CM. It’s really disappointing that I will not be able to gain additional resources with this diagnosis. I will just have to save the money for next year. I just hope my symptoms do not continue to increase or I may have to have the surgery before I have a chance to ask questions to other professionals in this field or those people who have had similar symptoms that also had the treatment I will be receiving. I will keep being positive because that’s what is helping me get through the days like yesterday.

For more information regarding the American Syringomyelia & Chiari Alliance Project’s annual conference be sure to visit: http://www.asap.org/index.php/get-involved/conference/. You can also use this website to learn more about my disorder.