i know it's stupid to say that, it's not like i get a choice. but this damned stupid nightmare of me having leukemia, i want to wake up. i don't want to keep being strong. i am tired of waking up every morning to same horror that i went to sleep with. im tired of getting up and pretending for everyone that i am ok. i'm sick of feeling like crap. i'm tired of the fact that i feel far worse to today than i did 3 months ago, with untreated CML. i don't want this to be normal. i want the old me back. the me that got to not worry about medication and didn't worry about whether i was running a temperature every time i feel a little ill. i want to wake up tomorrow feeling good. i don't want the swollen eyes and the fluid retention and the nausea and the diarrhea and all of it. i want to get to be me without cancer for one more day.
the realization that this is forever. that i have to live with this always, and that there is no real remission and that even with the remission i might have, i'll still have to take medication forever. and that i will always have to worry about medication stopping working. and that i will pay the maximum legally allowed for insurance forever...
all that is turning my life into something i never ever wanted. i never wanted to be sick. i remember having this conversation with Jeremy awhile back about not wanting extrordinary measures taken to keep me alive. that i didn't want to be sick. and now i am. and i can do nothing but live with it.
there is a tiny part of me that wishes this were normal cancer. where i could have surgery and chemo and radiation and then in 5 years maybe i'd be considered "cancer-free". only i never get to be that. ever. life is incredibly unfair. today... i'd like the world to stop, i want to get off.
*hug*
ReplyDeleteI can't wait to see you tonight, first of all. Secondly, did you ever check to see if counseling was part of your insurance package? I know that there are specialists who deal specifically with chronic conditions.
I have no idea how to respond in any meaningful way, other than to say I think I can understand why you might feel that way, and I am thinking of you from far away.
ReplyDeletei started counseling last week. unfortunately there really isn't any way to fix any of this. so it is a place to talk where i don't have to worry about upsetting people, but not much more than that.
ReplyDeleteI'm glad for blogs where people like you who are going through things, good or bad, can talk about it. It helps me know where you are, how you got here, and how to pray for you. Thanks for touching that deeper, inner part of us and thanks for allowing us to walk along with you.
ReplyDeleteYes taking medicaine multipul times a day sucks and I feel like I am takeing the whole pharmacy. Yes life was better without all the meds. But you still have to be grateful that you have the extra time with your family. When I am feeling really bad I try to do some thing for someone else.
ReplyDeleteTry pulling a skein of yarn from your stash and making a scarf to drop of at the homeless shelter or school for a locl income child. It might help you feel better.
But Rita is always helping others even now, it is why I honor her so much... I understand exactly how she feels, I feel thY way about my lost eyesight I can never get back because nothing can be really done. So I understand so well, hugs to you Rita... I am so glad you are so brave as to have this blog, and let evryone who cares into your life
ReplyDeleteHugs and prayers!!! I am glad you started counseling. It should help you get it all out. It is not a fix but should help a bit in the way of stress.
ReplyDeleteRita -- I have CML as well and we are fortunate to have these treatments available to us - otherwise it'd be a pretty bad scene. I know it's tough that it's "response" and not "remission", but I draw strength from others who are living with CML. I am only 6 months into treatment and life has already gotten quite a bit better and easier to cope with, so it will get better for you as well. From one CMLer to another, hang in there! :-)
ReplyDeletethanks dan, it's good to know it gets better. i certainly hope it gets better.
ReplyDelete