The past few months have had a slow improvement since last I wrote. I've been able to do some mild walking and able to work nearly full time. Had some ups and downs though which worries me that whatever bug I have might be adapting (or has adapted) to the Valcyte due to the first time I used it a few years ago...That being said, there still seems to be an upward trend towards increased health for which I've very thankful for.
Came across a patient at work the other day that rather disturbed me. She stated that she had a history of Fibromyalgia (for which I was being very considerate of) and was acting entitled! 0.0!! Like FM is something that you can hold up and state "I have this! Now do what I say and pity me!" Wow...
Was at my Internist today - all my labs looking good. The AST and ALT are still in the good range and I am continuing to take the FolaPro supplement.
Good News! I've lost about 10 pounds since starting the Valcyte in January. Most of that has been in the past few weeks. Realized that there were a few things that I needed to change in regards to eating and it has helped a great deal so far.
All in all, things are progressing well and I'm hoping they continue to do so. I'm looking forward to the 1 year mark as many others have stated that they have gotten significantly better around that time point. Looking forward to it!
- Be mindful of your eating: Eating food is not the time to be multitasking. I figured this out while reading a book - From Bagels to Buddha by Julie Hollis. She talked about how the Buddhist retreat she went to required bowing to your dinner prior to each mouthful of food. While I admit that is a bit extreme, I think the lesson of being mindful of your eating has increased my enjoyment of what I do eat and also reduces the quantity.
- You will not starve: During some introspection about my eating habits, I realized that every time my stomach starts telling me I'm hungry, I go get something to eat. While that is relatively normal thing to do, my body is giving me that signal more often than it should due to lack of energy (or so it seems to me). Also, I've been afraid of running out of calories to burn while at work, causing a mini crash (which is an awful thing to have happen to an ER nurse). So, to prevent that, I would load up on the food both before and during a shift. Not so much anymore. I am trying to drink more fluids to reduce the amount of food I take in while feeling hungry. Seems to be working. ;-)
=== BY THE NUMBERS ===
Weight: 255.2 lbs
Activity Level: 6-8 depending on the day
Current Dosing: 900mg in the morning.
Lab values of note: Liver values continue to normalize!!
- AST = 29 -> previously 30 (norm 10-40 U/L)
- ALT = 42 -> previously 48 (norm 9-60 U/L)
- Glucose = 125 -> previously 69 (norm 65-99 mg/dL)
- this was likely due to drinking a bottle of soda prior to having my blood drawn...
Valcyte - 8 months, 1 Day
Blog entry posted by ArgyrosfeniX, Sep 14, 2012.
About the Author
Living with ME/CFS since the age of 16 (1989). Was persistent enough to get three Associates Degrees and get married through it all. Working hard to keep going for as long as I can before becoming bedridden. Current treatment plan is to use Valcyte for 2 years starting January 13th, 2012, then possibly switch to Valtrex for an indefinite period. "Here I am trying to live, or rather, I am trying to teach the death within me how to live." ~ Jean Cocteau