Ugh. Sorry about the long silence. I've had all sorts of problems with new medications combined with horrible insomnia, so I have not felt up to writing. This post will be written in spurts, so there might be some repetition or jumping around of ideas.
My progress is so slow that on a day-to-day basis I feel like I'm not making any progress. When I compare myself now to how I was before the lumbar puncture and blood patch (when I was working full time), I'm still in pretty bad shape.
However, when I compare myself now to how I was immediately after the research study (when I was REALLY bad off), I can tell I have made some improvements. Here are some improvements
I'm still exhausted and not sleeping well, and I'm sleeping a lot. I'm still having trouble breathing. My throat hurts on and off, and I've got a blister on what remains of my left tonsil. My lymph nodes still hurt, and my memory is a mess. I feel like the forgetful fish Dory in the movie Finding Nemo. It's funny, but not.
So much has happened since my last post that this post would become a book if I tried to explain everything, so I'll just try to cover the main points (not necessarily in chronological order)
I am not a big fan of prescription medications because I've been on so many over my lifetime. I rather prefer natural remedies; however, all the supplements I'm on are obviously not enough at this point. I have an appointment with my regular doctor on Monday, and I want to talk to her about possibly taking antiviral medication.
I've read that some CFS patients have had some success with long-term antiviral medications. Multiple blood tests have shown elevated levels of EBV in my system (and occasionally elevated HHV6). Most of my symptoms are very viral-like, as well, so I'm hoping she'll consider a prescription. If not, I'll keep plugging away. There are also a few more supplements I want to ask her about.
Oh, and my Short Term Disability has still NOT been approved. It's still pending, so that's better than being denied. I started the process on November 20. I'll post an update if/when anything happens.
I'm too tired to write any more, so this will have to do.
Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, insomnia, mild headache, low grade fever 99.3 (99.7 yesterday), blister in throat, sore lymph nodes under arms and in neck, tired muscles, poor memory and thinking problems, air hunger, area of blood patch has still not healed and is itchy.
Mood (10 is best): 6
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5
P.S. Happy Hanukkah to those that celebrate!