Tuesday, February 17, 2015


Finally getting back on here. I meant to update repeatedly over the last months, but there was kind of a lot going on, and most of all, I've been really tired. My tablet & phone have also taken over most of my Internet usage, making my laptop feel like a huge, heavy relic that takes sooooo much effort to whip out...

But here I am. Still tired. (And yes, I get the irony of just having finished a post about my dissatisfiction with the new name, SEID, and now complaining I'm tired...but I know you know that's not the point...Yes, I'm tired, but there are so many other reasons I've been miserable.)

Not sure what happened. I was feeling really good when I was doing the juicing and raw foods, but then I started getting tired. And never really stopped. It probably didn't help that I stopped my SSRI, and slowly spiralled into the grasp of depression and anxiety. After getting back on, that's mostly all better, but I'm still tired. For once, I'd be completely happy to stay home and lie around napping all day. Which is strange considering that even when I'm virtually glued to the couch during a POTS flare, I'm not sleepy, and my mind is always running.

Despite my disappointment at the new name for CFS, I was excited to read about the Rituximab trials in Norway. Unfortunately, I've already given most of my 30s up waiting for my Disability insurance, or a successsful treatment, so 2-5 more years, taking me into my 40s, is a bit much. Not to mention, I'm going to have to figure out how to survive on monthly Disability benefits that won't even pay for a 1 bedroom apartment soon...And living with strangers while sick has already gotten old.

I contemplated trying to get Rituximab in another country, but it still seems like it would be pretty expensive, and it is, after all, chemotherapy, so not something to mess with lightly. (It's usually used to treat Cancer and Autoimmune diseases like Rheumatoid Arthritis and Lupus. If I understand correctly, it wipes out these things called b-cells that are what's malfunctioning in a dysfunctional immune system such as with CFS, then your body can make new ones that work as they're supposed to.)

Thankfully, my Doc had a new treatment for me to try. Another anti-viral. It's supposed to help pretty quickly,if it's going to, but I just started it Saturday.  So we shall see how that goes. Trying not to get my hopes up too high, but still hoping. So far, I'm just feeling a bit fragile, not quite weak, not quite devoid of energy, but a bit different. Was a bit nauseous today, but that could just be acid reflux. So we shall see...

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