First of all I could just cry because I wrote this huge update, my battery died and lost the entire entry. Oh well what's done is done. I will try to remember most of what I had typed. My short term memory is the absolute pits.
Long overdue update...
The first month of Round two went well, I actually was functioning better than the past winter and Spring. Month 2,3 and 4 weren't so good. I got progressively worse like last time before getting better. I could get dressed and downstairs on most days but do nothing else, with the odd day bedridden. I started to feel much better at week 18. I was quite worried as last time the magic happened at week 16 I believe.
Well the Valcyte worked again for ME!! I have a life!
I can drive again, not too far. I can go to small stores and walk around if I get parking right in the front. I'm dressed everyday, makeup and perfume on even when I'm alone lol. I'm so happy I have a permanent grin on my face.
This winter at least I won't have the carbon monoxide problem which pretty much took away 8 months of progress I had made with Round One.
I drove tonight, first time driving in the dark in four years. I made supper three night in a row which is a huge progress for me. I feel like I can look after my family a little finally. Winter is here and I can't wait to take teeny weeny walks to start. I can walk about a minute. My goal once again this year is to walk to the mailbox and back ( I sound like a broken record as I have been hoping for that for years). I think it's going to happen this time.
I hope to be present this Christmas season. Not like previous years when I watched my family decorate the tree via Skype from the upstairs bedroom or on a better day, sitting on the couch, using laser pointer to show my family where I would put my favourite ornaments if I could get up and do it myself lol
What has helped me a lot is wearing a heart monitor for the last few months. I have to stay under my anaerobic threshold which for me is 106 bpm. If my alarm goes off just by putting bread in the toaster that means " girlfriend, stop what your doing right now and do nothing for the rest of the day."
I probably won't be getting to my Dr. In San Francisco until late Spring 2015 so I won't know what my numbers are doing. I am extremely lucky to only have the two viruses to battle (HHV6/EBV) without co-infections and to be a Valcyte responder.
My blood work is still in the safe zone except absolutely no alcohol for me while on Valcyte as my Lipase level goes through the roof.
I have 1.5 months left on Valcyte and will have to see what game plan my Doctor has for me next.
I'm not sure what the future holds for me, but In the meantime I will keep pacing, enjoy the new quality of life I've been given regardless how short it might be, and continue to nap three hours every single afternoon.
I hope I keep having good news to share and if I don't I'm happy today. My husband and I are like a constant comedy show, we laugh to tears no matter what shape I'm in. We still find it so funny that every time I need to use the wheelchair for distance I still get approached by someone who says "party too much"? I can't believe it! Next time I will just reply with an equally ignorant answer, "no I have a yeast infection" ! Lol
My song of the week: Alive by Edwin " Ain't it good to be alive, to feel the sun strong against your face"
Long overdue update...
The first month of Round two went well, I actually was functioning better than the past winter and Spring. Month 2,3 and 4 weren't so good. I got progressively worse like last time before getting better. I could get dressed and downstairs on most days but do nothing else, with the odd day bedridden. I started to feel much better at week 18. I was quite worried as last time the magic happened at week 16 I believe.
Well the Valcyte worked again for ME!! I have a life!
I can drive again, not too far. I can go to small stores and walk around if I get parking right in the front. I'm dressed everyday, makeup and perfume on even when I'm alone lol. I'm so happy I have a permanent grin on my face.This winter at least I won't have the carbon monoxide problem which pretty much took away 8 months of progress I had made with Round One.
I drove tonight, first time driving in the dark in four years. I made supper three night in a row which is a huge progress for me. I feel like I can look after my family a little finally. Winter is here and I can't wait to take teeny weeny walks to start. I can walk about a minute. My goal once again this year is to walk to the mailbox and back ( I sound like a broken record as I have been hoping for that for years). I think it's going to happen this time.
I hope to be present this Christmas season. Not like previous years when I watched my family decorate the tree via Skype from the upstairs bedroom or on a better day, sitting on the couch, using laser pointer to show my family where I would put my favourite ornaments if I could get up and do it myself lol
What has helped me a lot is wearing a heart monitor for the last few months. I have to stay under my anaerobic threshold which for me is 106 bpm. If my alarm goes off just by putting bread in the toaster that means " girlfriend, stop what your doing right now and do nothing for the rest of the day."
I probably won't be getting to my Dr. In San Francisco until late Spring 2015 so I won't know what my numbers are doing. I am extremely lucky to only have the two viruses to battle (HHV6/EBV) without co-infections and to be a Valcyte responder.
My blood work is still in the safe zone except absolutely no alcohol for me while on Valcyte as my Lipase level goes through the roof.
I have 1.5 months left on Valcyte and will have to see what game plan my Doctor has for me next.
I'm not sure what the future holds for me, but In the meantime I will keep pacing, enjoy the new quality of life I've been given regardless how short it might be, and continue to nap three hours every single afternoon.
I hope I keep having good news to share and if I don't I'm happy today. My husband and I are like a constant comedy show, we laugh to tears no matter what shape I'm in. We still find it so funny that every time I need to use the wheelchair for distance I still get approached by someone who says "party too much"? I can't believe it! Next time I will just reply with an equally ignorant answer, "no I have a yeast infection" ! Lol
My song of the week: Alive by Edwin " Ain't it good to be alive, to feel the sun strong against your face"
