Friday, January 23, 2009


Today is my fifth day. My sense of time has shifts depending on the hour. Sometimes all I want is for the next six months to pass so I know what the outcome of this experiment with Valcyte will yield. Time slows waayyyy down when I get in that frame of mind. At other times I'm gritting my teeth to in order to bear the moment. Mostly I've been trying to remain in the present and just be with whatever is happening.

My days are taking on a new routine. I wake up usually aware that some strong force is in my body. I lay in bed for awhile because I'm not feeling all that well. I'm also not sleeping well which isn't a good thing in many respects. I get up and prepare to take Valcyte. I can't swallow pills so I have to crush it but the powder can cause cancer if it comes in contact with skin so I put on gloves, protective eyewear, and a mask so I can't breath in any powder. This was recommended by a couple pharmacists as well as Roche itself. It's crazy because I put on all this protective gear, crush the two pills, pour it into a bowl with applesauce, take all the protective gear off and eat the applesauce. I'm taking a chance crushing the pills because it increases the risk of side effects but the alternative is to choke. Luckily my CFIDS doctor is closely monitoring my bloodwork. I have a standing order to have my blood drawn once a week for the next six months.

After I eat the applesauce I eat some cereal, take my thryroid medication, my hydrocortisone, and the supplements for the methylation protocol. Then I wash the dishes from the night before and do some things around the house.

A couple hours later I make myself a protein shake with more supplements: vitamin C powder to boost my immune system, Hawthorne Extract for my heart, Holy Basil for mood, Dr. Wilson's Adrenal Support for my fatigued adrenal glands, Calcium/Magnesium, Vitamin D drops, and a few other things that I've forgotten about. Then I wash the blender.

I go lay down and eithe meditate or do relaxation exercises. I lay in bed for awhile. I've noticed I have more fatigue since taking Valcyte. Then I do some reading for my class.

I make my green drink which takes awhile. Then I go lay down again and try to read some Jungian stuff. Nothing stays in my head.

Today I went to have my blood drawn again. Each week I'll have a CBC (complete blood count differentiated) and a CMP (complete metabolica panel to test for liver funtion, kidney function, blood sugar, etc...). The wait was long today. I sat in the lab trying to control alternating feelings of slight anxiety and feeling somewhat faint/woozy. I was sitting in the chair and looking down at the stained rug, surrounded by people and for a moment had this horrible feeling of oh my god-look at what my life has become. I went from a promising career in my field to sitting in a lab struggling not to pass out barely able to drive the 1.5 miles to the lab in a car that barely works. It was not a pretty moment. Usually I have a pretty good attitude but this one moment was bad. I think it might be compounded by the Valcyte.

Luckily the woman who draws my blood is quick. I've noticed something strange though. When blood is taken out of my left arm it flows nicely but when it's taken out of my right arm it's much more slow, sometimes the technician has to tap the vein and encourage the blood to come out. I hate it when that happens. As the lab tech is saying "come on, you can do it, don't give up now" I start to silently panick and begin whispering to myself "don't faint, do NOT pass out, think of something else..."

It's unsettling how one's life can change so drastically even with the best laid plans...

1 comment:

Paula said...

My last Dr. appt. I had to lay down on the floor in the waiting room to either keep from passing out or having a panic attack - ON THE FLOOR. I kept thinking the same thing "what the hell has my life become. I can't even sit in a chair". I didn't care what people thought, I had to lay on the floor. Everyone passing by, wondering what the hell is wrong with her. How does a rational mind wrap itself around this illness?