I was so tired yesterday that I forgot to mention a couple of things. First, they lowered my dose of Prednisone down to 20 mg. daily. So, that's good news. The not-as-good-news is that there is evidence of CMV (cytomegalovirus) again. So far, it's low enough that I don't have to restart the Valcyte but if it goes up, I guess I'm going to have to take it again. I really don't want to because of the way the Valcyte suppresses my blood counts. They're just starting to come up.
I'm still not sleeping well. I fall asleep as soon as my head hits the pillow but I can only sleep for about 3-4 hours and then that's it. I haven't been taking any sleep aids but I just might start.
Mom left today (again) for Florida. She's planning on staying there for about a month and coming back up north before Passover. This will be our first Passover home in...years....I don't even know how long. But I can't go down to Florida this year. So the whole family has to suffer right along with me. Honestly, I'm kinda looking forward to spending it at home - like the good ole days.
I'm still having trouble walking up stairs, bending, etc. I had an evaluation from a visiting physical therapist yesterday. It went very well. He'll be coming a couple of time a week for a couple of weeks and then I'm on my own. He gave me some exercises to do every day. I think that that is all I really need as far as getting my leg strength back is concerned.
That's it for now. I'm hanging in there and I appreciate your hanging in there with me and for keeping me in your thoughts and especially your prayers.
Hi Leah- I am so glad today is a good day and that you are home. I have not forgotten about you and I ask about you thru Illana alot. Glad to hear your mom went to Florida. She needs a bit of a change. I dont know if you are up for visitors- tellme. I know how sad you feel about the Wolowiks tragedy. I saw them a few hours ago and they are simply remarkable in their strength and humility. We cal all learn from them. Get well soon and just feel better. We all care about you.. Limor
ReplyDeleteHello my friend, It sounds like you are having a pretty good day. I'm glad mom was able to take off to Florida today and I hope she arrived safely. A little less prednisone is good and I'm sure they'll be watching you closely for that nasty virus. Ebbs & Flows I think they call it. Keep up with the exercises and you'll be dancing in no time or playing the yukele which ever your little heart desires. Be careful if you go out because it is very slippery. Oh well my little chickadee I'll speak to you soon. All my love Buford xxx000xxx
ReplyDeleteLee,
ReplyDeleteYou didn't tell me about the CMV thing. You're in big trouble!!!
Schvest
Leah - how exciting about the Prednisone. Now we are on the same dose!! :-) Don't worry about the CMV. Just keep tabs on it and if you have to go back on the Valcyte, just try not to worry about the blood counts. They will come up again when you go off it. Anyway, stay positive and smile lots. It helps.
ReplyDeleteLove and hugs.
Marsha
Leah,
ReplyDeletePlease call me if you need anything, anything at all. I don't want to be a pest, but I'm just around the corner and more than happy to help[ out. My love to Rach and Jacob. And of course, to you.
Geanie