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!
Tag: meds
Lightbulb Moments: Topamax, Meds, Starvation and Adrenal Issues
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
Teetering
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
Risky Decisions, or, Valcyte: the Very Scary Adventure Ends
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
We Know the Enemy, or ME/CFS/FMS Explained Again.
Wee little note - this is out of date. I started this blog in 2010, for my family for the most part. To help them understand my illness, and help me work out my thoughts on it and also other matters. Since 2010 I've learned a lot of things about the nature of my illness,… Continue reading We Know the Enemy, or ME/CFS/FMS Explained Again.
Still, Surreal, and Chocolate
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
Wolfdreams.... 