I was very behind on answering e-mails. I’m sorry! Just making it to appointments and doing “normal” people stuff, I haven’t had much time. So, if you have sent me an e-mail and I haven’t answered, it got lost somewhere in the internet! I would say 1 out of 4 e-mails asks me: “Do you…… Continue reading Should I go to The POTS Treatment Center?
I have an appointment with my Immunologist tomorrow. I am sharing the report I put together for her on my experience with Medrol (methylprednisolone). Here is the post I wrote on day 2 of steroids which explains the “why” of this experiment and another post written as I began to feel less side effects from…… Continue reading The Steroid Experiment: Thoughts, Pros, Cons
Even though there is hope on the horizon, I’m feeling a bit overwhelmed by the feeling of being stuck while life passes by with me as an observer. In fact, I am reaching the end of the first “why me?” day I have had in awhile. For the first portion of my day, I tried…… Continue reading How to Have a Why Me Day
When I visit a new doctor and s/he hears about POTS, I am often asked to stand so the change in heart rate can be observed in action. Here is the thing: standing in one spot so the doctor can see my pulse jump makes me physically uncomfortable. In day to day life, I never…… Continue reading Doctors Wanting to See POTS in Action
People often remark that I’m pretty lucky. Luck is only important in so far as getting the chance to sell yourself at the right moment. After that, you’ve got to have talent and know how to use it. – Frank SinatraThis quote is strangely true of medical appointments, at least from my perspective. Sometimes others…… Continue reading Luck and Medical Appointments
You should read this article: “Stop Telling Me How To Eat To Cure My Incurable Disease”…. if not, here is the gist: What I wasn’t prepared for was the fact that now, with a label, would come a host of people who would indirectly tell me it was my fault for having lupus. Many times…… Continue reading Diet and Disease — Leave Us Alone Post #1
Did you know I am an avid reader? I’ve been escaping into dystopian and sci-fi type novels, but suddenly I was in the mood for a book with a chronically ill protagonist. I’ve been in a bit of a funk and I thought a narrator who voices my thoughts, who lives life the way I…… Continue reading “The Moonlight Sonata at the Mayo Clinic”