Driscoll Theory
Whether or not this will prove factual, as more studies are completed, it is awfully exciting to me. I have to say that a lot of what she says makes sense. Thank you, Dr. Driscoll for your hard work and continued advocacy!
Posts Tagged ‘Dysautonomia’
A Different but Similar Perspective
My friend Ila, who also has EDS and Dysautonomia recently sent me this blog post she came across to read (If the rest of this post is going to make sense, then you should read the post from the link above first). I read it a few times, and have thought long and hard about this person’s perspective. I totally respect what this person has to say and her experiences with both Dysautonomia and EDS. There are so many things she says that I found myself nodding my head in agreement to. However, there are a few things from this post, that I would like to just bring a different perspective to. I feel that we must keep in mind that when someone blogs, it is one person’s perspective, based on their personal and individual experiences.
I, myself, have to realize that when I post about EDS and POTS, it is from my experiences, and my experiences only; MY symptoms, My struggles, My triumphs, and where I am on the very wide spectrum of both disorders. I know there are going to be things I say along the way that people disagree with, but when I started this whole blogging thing, I knew that was all part of the “game.”
The Bright Side of Chronic Illness
Dr. Rosen asked me at my last appointment if I wished I was never diagnosed with EDS. I was already emotional and actually got kind of angry at his question. Without any hesitation, I snapped back that of course I wish I didn’t have EDS.
After I left my appointment that day, it was as if Dr. Rosen’s question was haunting me. I could not get it off of my mind. I realized as I thought more and more about it that the answer to that question is not as black and white as I thought it was at the time. I took that question with me to therapy. I took it with me to Georgia. I sent my Aunt Mada a Facebook message about it to see what her perspective was since she lives a full and active life with MS. And then I thought about it some more.
POTS in Toledo
April 20th was finally the day I had been waiting for! Brad and I went to Toledo for my POTS appointment with Dr. Grubb’s nurse practitioner, Beverly. When I was diagnosed back in November, I researched, and researched, and researched POTS like it was my job. I would say that 90% of what I found about POTS was either written by Dr. Grubb (an electrophysiologist), was written by a team of doctors including Dr. Grubb and Beverly, or included quotes from Dr. Grubb.
When I went to see Dr. Tinkle in Cincinnati for EDS, Dr. Tinkle told me I needed to get in to see Dr. Grubb because he has such a strong understanding of not only, Dysautonomia, but also how POTS and EDS play into each other. However, I was warned that it takes quite some time to get into him because people all over the country travel to see him.
GOOSEBUMPS!
I get tears in my eyes and goosebumps all over my body when I read this blog post. I have read it three times today.