So its been a while since I last posted....sorry..Its been a whirlwind. Treatment has taken its tolls on my fingers (and toes and scalp for that matter). I currently only have 4 "good fingers". The rest are full into sores, or at the beginning stages of them. No matter what I put on them they are painful and make typing nearly impossible. Currently its my pinky and thumb that are spared, on both hands. There is a fancy word for it (paronycia)-they are gross and I'm over them.
Then there is the scalp sores. It looks better, but then I have treatment and a week or two later it looks worse. I've been taking 2 steps forward and three steps back with this. I'll spare you the pictures that my doctor asks for. Partially bc I am super embarrassed by the big bald spot on my head. I've been wearing bandana's and now that it is cold a winter hat over them. The ooze is like paste (or gorilla glue) so trying to get it out of knit hats and my hair has been a pain. So a bandana it is.
I officially stopped working 3 + weeks ago. I met with the county retirement board and filled out my paperwork for disability retirement. I won't know if it is approved for some time. But working was becoming increasing difficult. I haven't driven in several months, I haven't walked upstairs in even longer and I feel like my memory was declining. I have tried to hide the symptoms and side effects but it was getting increasingly harder.
This is not how I thought my story would go. At all. In fact I thought I would work until the kids were in college. There were many conversations with my family and my doctors and ultimately my prognosis isn't good. I don't know how much time I have left but I want to be present for the boys. I don’t want to go to bed at 6:00 bc im exhausted. It’s important to me to be present for the boys with the time I have left. So here I am a month out from working and wondering what my next scan will show. Wondering when I will change treatment because this one stops working.
this wasn’t an easy decision but it was the best decision for me and my family.
Things will be different in the future. I am not driving-and depend on my mom and sister and Bryan. My family has been helping with housework, and scheduling appointments. At 44 I never thought this is the help I would need. But I know I can’t do it with them. I am so incredibly grateful for all that they have done for me, Bryan and the boys.
My ride at the walk went great. It was colder than I was expecting so my family to the rescue with blankets and a hat. Bryan pushed me the whole way. The kids didn’t complain and they had their friends with them the whole way. It was incredible to see the support from my community and friends. I reached my goal of $3,000 and my team was just shy of their goal of $5,000! Thank you to everyone that donated, shared and cheered me on! Your support means the world to me!!! Thank you from the bottom of my heart.
my job for the foreseeable future is to keep fighting until research and medicine catches up to me! And I will keep fighting for my boys!
Comments
Post a Comment