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| My nest |
Besides that, I have a very lovely place to hang out. My bed i.e. my nest is sooo incredibly comfortable that it is no burden to be in it. I do make it a point to get out of it and move around the house...gotta test my energy level and do little chores along the way.
Here is my status as of today (tomorrow is 2 weeks post infusion #5)
Joint Pain - no
Chest Pain/Pleurisy - No
Headaches - Yes
Dizzy/Vertigo - Yes
Fatigue - Totally
The upside of being down for so long is interesting. There is no doubt that I am getting rested. It's just that any exertion on my my part exhausts me. My sleep schedule is way off as well. I often wake up at 3 in the morning and then I am wide awake after that. I read, I write - journaling everything from when I take my meds to what I eat...boring stuff but it I think it's helpful for me to keep track of all this somehow.
I am surprised to find that I am not watching much TV. It's very peaceful at my house during the day and I am listening to music more than anything else. I should indulge in some more documentaries, though. I am also talking to my mom - who loves to worry, but I keep reassuring her there is no need to worry. I have to connected to family I didn't know I had. Have been talking to a couple of favorite aunties...
The downside of being down away from work and people is that it does begin to get a bit lonely. I feel disconnected from my work buddies and what they are going through. Guilt about what they are having to do in my absence bothers me as well. Not that they aren't doing a great job! I know that everything is running smoothly...great program, great co-workers...great!
As I said, it could be worse. I am not writhing in pain. I am just a bump on a log or a Queen Bee in my lovely nest.
There is an educational program about Benlysta tonight in Emeryville at 6 pm....saving my spoons up today and we'll see if I Ron and I can make it there.
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| yes that's me and I am alive! |
