I recently hit the 2 year anniversary since I started taking Valcyte for my ME/CFS. The post I wrote detailing my decision to start on Valcyte, a pretty risky drug as drugs go, is still one of the most visited posts on my blog. That post was written Feb. 10, 2011: Valcyte: The (Slightly) Scary… Continue reading Valcyte for ME/CFS: 2nd Anniversary Recap!
The past few days have seen two important "lightbulb" moments happen for me, which I'm sharing here because I know many of my fellow patients are facing similar problems and on similar meds... The ER Visit The Wasn't: Late yesterday afternoon, I started feeling decidely "off," even for me. I was brewing a hormonal migraine,… Continue reading Lightbulb Moments: Topamax, Meds, Starvation and Adrenal Issues
For some time now, since the "protein wasting," also called muscle wasting, and unintentional, major weight loss started, two years ago or so, we've been refering to my overall health status as "precariously balanced." When I say "we," I don't just mean Rhiannon & I, but also, my doctors. We are a team, working collaboratively… Continue reading Teetering
I've had the great blessing to meet (online) a lot of ME/CFS and Lyme/TBD (Tick-Borne Disease) patients. Many have become friends. I believe, taken as a whole, that this patient group has got to be the most medically-literate patient group around. We have to be. There are few doctors who have a clue what these… Continue reading Risky Decisions, or, Valcyte: the Very Scary Adventure Ends
My mother said to me the other day that my brother can't seem to wrap his mind around the concept that I'm really sick and there's really very little that can be done about it. He seems to still think that "if I only went to better doctors or the right hospital, they could figure… Continue reading We Know the Enemy, or ME/CFS/FMS Explained Again.
I just hopped onto my blog searching for some info on my Lyrica dosage and weight, as I'm about to go see my LLMD/rheumatologist, whom I haven't seen in almost a year. While sorting through the mess in my room, asking myself why on Earth I don't actually file important info like my old labs… Continue reading Still, Surreal, and Chocolate