Hi! Some of you know me as Candi, most of you know me by my author name, CM Wright.
I was diagnosed with Polycythemia Vera on Valentine's Day 2017, which is also my middle son's birthday. I had been misdiagnosed for so long, I was already in an advanced stage of the disease. Normally, it can be treated with little more than phlebotomy therapy. In simple terms, my body produces an extreme amount of iron. Eventually, it can turn into leukemia.
In my situation, some of my organs have been affected, and I also have to have aggressive treatments. I am also supposed to avoid stress. Unfortunately, the expenses related to everyday life and medical bills, treatments, medications and even the expense of traveling to appointments is the biggest cause of my stress.
My husband has been absolutely wonderful and so supportive. There's many days he has to miss work because of me, which hurts us financially even more, but there's not much we can do about it. To add even more stress on us both, his checks are being garnished for medical bills from a hospital I will never set foot in again. So sometimes, most times, his paychecks barely cover his gas to get to work.
We have very little food, mostly ramen noodles, which is probably one of the worst things for me to eat. And our electricity and water are constantly being disconnected. Family and close friends have helped us a lot, but it's a huge strain on them as well.
The latest addition of stress thrown at us is my veins, which have never been all that great, are pretty much on strike. Even with the use of ultrasound, they don't want to cooperate for the bloodlettings. Even though we've managed to get some blood out, it's not nearly enough, not even close to what it should be. So my counts are rising instead of going down, or going down so little that it only takes a few days to rise back up, and then some.
Because of this, I need to have a port installed. My new hospital has been amazing and has waived the hospital incurred costs, but they can't do anything about the costs from outside the hospital, which includes the actual port. Even if insurance changes their minds and decides the procedure is necessary, we haven't met our deductible for this year yet, so a lot of the cost will be ours to pay.
We aren't eligible for any assistance. I know. It's crazy, but the truth. They go by gross income, not what you actually bring home, OR could POTENTIALLY be bringing home of you hadn't missed a day or two of work in that pay period for your needy spouse. Shame on me!
So basically...we need help. Not many people are good at asking for help for themselves, and I'm one of them. So I'm thinking of my kids and my husband, and what it will mean for them if they don't have me around (LOL not a pretty thought!) and how maybe, just maybe, I can help destress all of us. Give us a chance to breathe a little, regroup, and emerge from the rubble, on fire and ready to keep fighting.
Thank you for any and all help, even of all you can do is offer words of encouragement, prayers or sharing this with others. Those things mean more to me than you could know. They play a huge roll in what's gotten me through this far, and even if I haven't had the energy to tell you personally, please know the messages and comments left on FB and messenger have sometimes been the only things to make me smile and lift me up when I really didn't think I had it in me.