So I was super nervous about my appointment yesterday with the cancer genetics department at UNC Chapel Hill Hospital. I got in early on a cancellation appointment so it was very last minute for me to get off work and go into be seen. I wasn’t sure how I was going to explain a  family history I have so little of with virtually no time to prep. I have siblings that I know and live with but that is about it. Otherwise, being adopted has me limited to my knowledge of any ancestry. I only wanted them to run one blood test yesterday and that was the most important to me. The one I can’t wait a year on to find out if positive or negative. That’s the Ehlers Danlos Type 4 blood test. It test the COL3A1 gene defects in the blood. Now, this will be the longest 4-6 week wait of my life to hear back the results of this test but I am pretty confident that I just have classic or hypermobile EDS. He told me it was a bit hard for him to distinguish which of the two I have but that it was looking more towards hypermobile. Seeing how I do have a scheduled appointment with a cardio geneticists who specializes in my conditions I will leave it up to her to test me for other things and to differentiate between which EDS type I have. My biggest concern right now is that I don’t have EDS type 4– not going to bother worrying over the latter.

http://www.ednf.org/vascular-type

……..MCAD Frustrations with eliminations of high histamine foods. I haven’t even begun to process the foods I need to cut out. I haven’t even made a food diary yet. I guess with so much going on I’ve been putting on backburner. However, I think it’s time to start one soon.

Mast Cells & Collagen Behaving Badly

I still get frustrated at the lack of information on the histamine content in foods.  There is barely any research on the subject and I have no idea what information most of the low histamine food lists is based on (my own included).  I found the same when trying to research anti-inflammatory foods.

After listening to Dr Theo’s talk yesterday, and the fact that luteolin and quercetin are mast cell stabilizing compounds, I looked up “high flavanoid foods” and again found very little.  After Googling til my fingers bled, however, I came across this site from the US Department of Agriculture which pools loads of small research studies and lists the information in a table.  Hurrahhh!  I then spent most of the day analysing the data and came up with a list of the highest sources of both luteolin and quercetin from the foods listed (please note, the following table…

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Compassion

Posted: June 13, 2015 in Chronic Illness, Dysautonomia

I’m trying to be as compassionate as I can to others as I would want the same understanding. I’m not nieve and know the ways of the world and the games some will play to get attention.  But, everyone needs someone.  Even though I have had an eye opener and my heart literally torn over the past few weeks. I have to move forward, heal and just keep my trust at a distance. I will be here for anyone in need that I care about and I am a healer by nature and always want to help others. I can be empathic, sympathetic, frustrated and sometimes even envious of those who struggle less.  I just hope I never loose my compassion and turn bitter because essentially I let my illness define me.

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http://getbetterhealth.com/a-doctors-letter-to-patients-with-chronic-disease/2010.07.21

Feeling a little better today. I am meeting my long time mentor and friend Lizzie for lunch and I am excited but a little nervous. She hasn’t seen me in a long time.Since before my trigger last August. I have distanced myself from those I care about because I don’t want this chronic illness to define my life anymore than it already consumes my day to day thoughts and processes. Therefore, I tend to stay away from family and friends unless I am feeling well enough to see them. It’s been way too long since I have seen her, and it’s time. Lizzie came to my high school graduation but was unable to attend my college one because her daughter’s birthday fell on the same day on top of this being her senior year as well! so I am foreseeing a lot of smiles today, excitement, joy. I know she is proud of me, and I miss her and the family ever so dearly. I only hope I can move forward and continue to make her proud. We have come a long way together since she met me when I was a teenager. Yet, now I have been struggling so much here on my own. I just don’t want to be defeated anymore. I want to overcome this. I am hoping by seeing her today despite not being completely well that I will have that inspirational boost to march forward. lizjess

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I had the pleasure of attending the 2015 Duke POTS Symposium a little over a month ago where Duke University Medical Center doctors and patients were presented a CME symposium on POTS and associated conditions. It was a 2-day event. The first day I attended a social media round table and the second day was the CME/ patient luncheon. It was an incredible opportunity to meet other physicians, patients and hear some great stories and educational topics.  Below are the videos and slides from the symposium.

I am very fortunate that I live in Durham. Where we are referred to as ” the city of medicine”.  I am within a few blocks from Duke Hospital. To be able to receive the type of care that I get and to have the type of support group interactions I have is truly a blessing. This two day event, was very tiresome but was worth every minute. Dr. Camille Frazier-Mills my electrophysiologist and also the creator of the symposium is very dedicated in helping Dysautonomia patients. Without her and her partnered clinicians at the Duke Syncope and Dysautonomia Clinic I would not be anywhere near stable right now.

Social Media round table

April 10, 2015 with Lauren Stiles President of Dysautonomia International, Deborah Jenson- Professor at Duke University, Jared Heyman Founder of CrowdMed and Emily Cardwell R.N and founder of FB groups “once a nurse” and “hyperadrenergic POTS support group”   https://www.youtube.com/watch?v=i4EEHffWlxk

2015 Duke POTS Symposium and CME

April 11, 2015 Hosted by Dr. Camille Frazier-Mills of the Duke Heart Center (Duke University Medical Center)

https://www.youtube.com/playlist?list=PLBPPJmonlKtBFKNgLbTHii3Ad_OnY5erV

Slides from the CME

Duke Heart Center Slideshare Page : http://www.slideshare.net/DukeHeartCenter/slideshelf

Working on vamping up my blog, so check in for updates on my pages. I intend to list a lot of educational resources and tips for patients like myself with Dysautonomia. It is my goal to make this a friendly patient based zone for those struggling with similar conditions. I have taken a very keen interest into researching and advocating in this field so I assure you that support can be found here. Given that I myself struggle with day to day chronic illness, I do have my good and bad days as well. So this is a free zone to express any feelings that may come with that. I hope in the next week or two to have a more complete blog setup so bare with me as I get this page off the road. Thanks!

-Erin Schwarze