Hey my lovely tribe,
It’s been a while since my last post - I’ve been needing a social media break as I’ve been working on my health. Two weeks ago I was in Oklahoma to visit family while also seeing my medical team out there. My interstitial cystitis, chronic painful bladder syndrome, has been in a flare causing a lot of urgency in which I received my laser therapy to help treat the symptoms & in a few months I will be receiving further exome stem cell therapy & my annual hydrodistention / cystoscopy surgery. I also had a echo to check the fluid surrounding my heart which I’m very happy to say THE FLUID IS GONE! I only now need to see my cardiologist if symptoms arise again :)

Then this past week being back in Utah I welcomed an addition to my medical team - the neurology specialist from the U of U. I underwent multiple tests which unfortunately did make me sick but this is what we learned:

My POTS syndrome is very severe, the results from the testing was off the charts, & it’s progressing; mainly effecting my blood pressure, body temperature regulation, & digestive tract. I will be seeing a GI for further testing. My blood pressure I will be starting on a new medication to help treat it along with needing to sleep in a raised position for better regulation. My body temperature regulation can possibly be helped with medication if not I may have to move to a warmer & more stable climate since this winter of being in both Oklahoma & Utah hit my body extremely hard, flaring my symptoms. I also have hyper joint mobility or EDS due to a weakened collagen fibres in my body. My neurologist - autonomic specialist has also asked me to read the book 80/10/10 & to try this diet change to see if it has any impact - which I’m happy to try since I would love to avoid more medications if I can. I may have other conditions which will be tested for - which I personally believe all these chronic autoimmune diseases are interconnected so I’m not too phased about being diagnosed with more as long as there is a plan for treating them.

I’m honestly feeling very optimistic. I’m under great care and there are actions that can be taken. And I’m ready to kick some ass 👊🏼🤍

 Utah 
@taylor_munholland ...read more