Mast Cell Madness and A Yoga Retreat
In January, I received the results from an eight-year-old colonoscopy that was stained for mast cells – the same month I started yoga instructor training with The Mindfulness Center. Despite doing what I do and the fact that I was helping Dr. Afrin publish his book, the results were not easy to accept. I felt anger & resentment, not to mention emotional and very scared.
The biopsies from an 8-year-old colonoscopy stained for mast cells – all positive
For me, mast cell issues have been a part of my life since I was a kid – I just didn’t know what “it” was. And no matter what I was or what “it” is (the EDS/MCAD/Dysautonomia/chronic illness combo), the reality is that about a year and a half ago, things dramatically changed after I got the flu shot for work. When you work in hospitals, especially in the OR, you are required to get the influenza vaccine – something I’ve done a number of times with no issues, or so I think.
Three hours after I got the shot, I doubled in pain feeling like my bladder was on fire (I have Interstitial Cystitis – dx when I was 23yo). I remember telling my husband that I felt like I was burning from the inside out, pressing on my lower abdomen to try and make the pain stop. And then I was hit an immense feeling of fatigue. I couldn’t control it and had to lay down.
Fast forward to January 2016, reading the results of the biopsy was hard because I knew things were worse now. My preference has always been not to complain or to gripe on FB or publicly unless I’m writing a post for my websites (which is very therapeutic thankfully). I’ve also found that it only makes me feel worse. Plus, there’s so much more to who I am, than any suffering or pain I may feel. That doesn’t mean I do not feel that it’s ok to vent, or that I judge people who choose to do so – we all deal differently, but it doesn’t serve me well. I’m also a huge believer in the power of the mind and the mind/body connection.
Sunrise Beach Yoga thanks to the Pocket Yoga App!
After I had received the results, I struggled with “What does this mean?, and “What should I do now?” My husband was right there with me – scared, but incredibly supportive. Dr. Afrin went over options and told me that it’s all about trial and error and that he would work with any of my physicians, to help me find what works best. He didn’t push one method over another – only stating that we are all so different. He also confirmed that my way of dealing with the trifecta thus far (exercise, nutrition, and lifestyle) are some of the best things we can do for our mast cells. However, we are all different, and it usually is an integrative approach that works best.
Another weird rash/skin thing that happens in the heat or sun thanks to mast cell issues
The reality for me is that since the flu shot in October 2014, I’ve been dealing with more “mast cell” symptoms (which are different than my EDS symptoms or previous mast cell issues) that affect my daily life in ways that I’ve not dealt with before. I’ve been judged by others in the EDS community and even by some of those who had asked me for help. I’ve been told that because I don’t complain openly, seem to function at a high level, and have remained as active as possible, my trifecta “is not as severe,” or that I’m stronger than others – both couldn’t be further from the truth. But, the last thing I care to do is try and prove how much I may or may not suffer, or engage in a “who’s worse” contest. If some of the world’s leading experts have never questioned my diagnosis or what I go through, no matter what I look like or how highly I function, then there’s no need to prove it or show it to anyone else.
This rash was all over my fingers and hands – something I usually get in the summer or when in heat.
The Costa Rica Yoga Retreat counted as 15 hrs towards my 200 hr requirement for YTT. It was an amazing and healing experience – worth every second. My stomach felt great all week, the whooshing in my head subsided, and I felt at peace. However, the trip wasn’t without mast cell-related issues, since the heat was a huge trigger for Dysautonomia/POTS issues and usually flares some type of skin rash/reaction – such as allergic eczema or psoriasis.
If you would like to learn more about where I went, the group I went with and read additional information on upcoming retreats, see links below:
Blue Spirit Costa Rica – Yoga/Wellness Retreat
The Mindfulness Center – Group/Wellness Center who I was with in Costa Rica
Information on the 2017 Costa Rica Retreat with The Mindfulness Center
YouTube video on the 2017 Mind-Body Retreat in Costa Rica with The Mindfulness Center