This has been the first time, in a long time, that I've sat at my computer to write anything.
I haven't had the strength to think and sit simultaneously. I always wondered who those commercials were taking about when they advised you can't take a medication if you "can't sit or stand for longer than 30 min."
"Who are those people and where do they exists?" I wondered.
Now I know.
The 60 mg prednisone has not stopped the attack on my guy. All foods flow freely through the GI tract.
The heme team put their heads together to prescribe another steroid that works directly o the bowel.
If this fails, there is the option of doubling my dose to an unheard of 120mg.
I wish I would have known tinkering and not starting at the exact recommended dose of 1mg/kg could have that consequence, but I didn't.
I wish I had a GVHD specialist guiding over this. I've managed to find specialists for my lungs and eyes that has given me major comfort. I'm going to check out Boston for this.
I do feel like I'm fading away, too sick and sleepy to do much. I hope I don't, but it's been a long time since fighting has been so difficult.
I'm awake about 4 hours daily, but it's worth it. I try to keep my routine with X, hang out with friends.
I think about the Basketball tourney's coming up. I'm so lucky that I know I can go anywhere I choose to get treated and my family will make it happen.
Hopefully it will make it happen soon enough.
My electrolytes, despite the diarrhea, are stable. Aside from feeling AWFUL, I'm looking okay.
Thank you again for all your support through the season. I wouldn't have made it through without you. Also, see those pretty lunch totes to the right? My friend Darcy is selling them on my behalf. We know a new trial in NYC is starting in Feb., and we're all ready trying to prepare for the expenses. I still have fight, and I'm so lucky for the faith and support of everybody. Thanks. Please pray this new medicine works so I can eat.
Hillary
I haven't had the strength to think and sit simultaneously. I always wondered who those commercials were taking about when they advised you can't take a medication if you "can't sit or stand for longer than 30 min."
"Who are those people and where do they exists?" I wondered.
Now I know.
The 60 mg prednisone has not stopped the attack on my guy. All foods flow freely through the GI tract.
The heme team put their heads together to prescribe another steroid that works directly o the bowel.
If this fails, there is the option of doubling my dose to an unheard of 120mg.
I wish I would have known tinkering and not starting at the exact recommended dose of 1mg/kg could have that consequence, but I didn't.
I wish I had a GVHD specialist guiding over this. I've managed to find specialists for my lungs and eyes that has given me major comfort. I'm going to check out Boston for this.
I do feel like I'm fading away, too sick and sleepy to do much. I hope I don't, but it's been a long time since fighting has been so difficult.
I'm awake about 4 hours daily, but it's worth it. I try to keep my routine with X, hang out with friends.
I think about the Basketball tourney's coming up. I'm so lucky that I know I can go anywhere I choose to get treated and my family will make it happen.
Hopefully it will make it happen soon enough.
My electrolytes, despite the diarrhea, are stable. Aside from feeling AWFUL, I'm looking okay.
Thank you again for all your support through the season. I wouldn't have made it through without you. Also, see those pretty lunch totes to the right? My friend Darcy is selling them on my behalf. We know a new trial in NYC is starting in Feb., and we're all ready trying to prepare for the expenses. I still have fight, and I'm so lucky for the faith and support of everybody. Thanks. Please pray this new medicine works so I can eat.
Hillary
1 comment:
Just read about something if you can stomach it...heard coconut water is better than gatorade or even IV to keep hydrated. You might want to try if you end up dehydraded. I have never tried it so don't know how it tastes
Always thinking of you and reading your blog.
Post a Comment