Friends, how many of you take to the internet to research your diagnosis? I’m not talking about WebMd (which always seems to tell you it’s possibly cancer when you really have a bladder infection, HA) but legitimate research, published studies, specialist’s books or articles etc.? I have to admit that I wasn’t as dedicated to learning or understanding my illnesses until I was diagnosed with POTS and MCAS. They were both so foreign to me that I had to dig into the data to really understand what was going on. I think I also needed the data to really wrap my brain around how we were going to fight them and help improve my quality of life. I am so unbelievably fortunate to have a practitioner like Theresa who herself is dedicated to learning and educating. Had I not been referred to her by way of my children’s pediatrician I would still be on repeat with my PCP doing basic labs and having randomly weird positives and being told he had no explanations. It was maddening and I’d given up on the cycle when the referral took place. Some days it feels like that call saved my life; it most definitely preserved my sanity!
For those of you with MCAS do you follow Dr. Afrin’s research and have you read his book? Have you found other sites or blogs posting protocols and research? Do you see the links many are making with MCAS and other conditions/co-morbidities? Do you have multiple illnesses that seem to all skip hand and hand together?
What things do you find most helpful besides your practitioners in understanding and fighting your disease?