It’s 1:09am – I’m still waiting for the pull of sleep, it hasn’t quite happened yet. My body hurts, I did quite a bit today. I made a one and done Honey Crockpot Chicken…it did not turn out well. The chicken was dry and while the flavor was there it was NOT a home run Continue reading

I didn’t end going to bed until 6:30am and slept until 7:45am when L came into the room to ask about his retainer. I feel like a complete zombie, unsure of what is what is what, who is where or even where I am. One medicine makes me high like I’m on meth or crack, Continue reading

Camping was supposed to be near Big Bear however it was going to rain and snow which would not have been that much fun for the kids. So we changed the venue last minute to Joshua Tree / Palm Springs for better weather and more outdoor activities. When we got there we had a little Continue reading

For the most part today came and went quietly. I didn’t sleep well last night again, apparently the prednisone counteracts the sleeping pill (even thought I take it in the morning only). I’m barely getting by on 4 hours of sleep. As I taper from it, the sleep should get better as well. But unfortunately Continue reading

I felt it this morning when I couldn’t peel myself out of bed I knew. It wasn’t good. I feel like absolute garbage. I’m dizzy and my blood pressure is 87/56. Not good. The amazing team at the infusion center got me in today for type and screen with a side of two units of Continue reading

It was a “drive up pick up” but it was an adventure. It was somewhere other than the infusion center or City of Hope. A change of scenery at the very least. The night time itch tonight started a little earlier….oof. My hands, back and shoulders are on major flares tonight. But again, grateful to Continue reading

I had a really hard time sleeping last night despite taking a sleeping pill. It was well past 1 before I actually went to bed. I had a 8:00am blood draw, she was here closer to 8:30am but I needed to take my morning meds anyway so I had no choice but to be awake. Continue reading

Quiet days sometimes are good days. I ate well today, but didn’t walk. I felt a bit dizzy but since MyChart doesn’t update me right away, I have no idea if my hemoglobin has dropped. I suspect it may have dipped slightly for me to feel this way, but beyond a little dip – I Continue reading

My whole body is itchy. Oof I’m on fire and with the new nails I have to be that much more careful. But I’m grateful for this itchy. I’m grateful for this GVHD because there are people who don’t get to have to opportunity to have GVHD because they couldn’t get a transplant. First I Continue reading

I wasn’t vigilant and didn’t notice or was too tired to notice that I didn’t get flushed after the pulled blood from my line this morning. So now one of my lines is clogged because blood was left in the line and I wasn’t flushed. This exact reason is why I am so anxious with Continue reading