To be honest I have no clue how this post will go, but I know when I am jumbled inside God has me write and Him and I meet there.
I heard from Whitney yesterday–she said that the neurologist just talked to the insurance company Thursday and they have 24-48 hours to make a decision. If they deny it, which is a real possibility (apparently it happens a lot) then we appeal and that can take weeks. So a few things I can take away from this, insurance companies! Why do they get to decide if I am worthy of having more time on earth? How is that right? Amyloidosis is a progressive debilitating FATAL disease, and Cigna gets to decided if I am worth spending 1/2 a million a year on to slow it down. I won’t even touch the cost of the medicine because 1/2 a million a year ummmm yeah nothing I can say about that! Just doesn’t seem right to me, and if I am being completely transparent it makes me angry, and then that anger just flows over to EVERYTHING. Yesterday wasn’t a good day, I was in a lot of pain, from the time I got up I was numb in the legs and hands and arms, and I was just worn out. Walking to the sofa felt like a marathon run to me. And then to know I am still not being treated, and apparently this is common for most with Amyloidosis its a fight, and why? Then I get frustrated that I am frustrated, where is my faith? Like I stated before God is not up in heaven on the edge of His seat wondering what Cigna will do. My prayer has been whichever comes through first insurance or the trial is the one that He wants me to do….so maybe He is setting up for the trial to happen…..
I heard from the trial yesterday too, she still never got my records, only one sheet. Apparently Indiana school of medicine and MUSC dont like to “talk” to one any another. The trial is a big deal because unlike most there is no placebo being given medicine is given to both, and its in phase 3. So she a lot of people are trying to get in it. So I found a friend who let me come use their work fax and fax about 45 sheets of medical records to her, she got them, and we are looking at September to go out to Indiana for 2-2 days for testing to see if numbers line up for me to qualify for the trial. If I qualify I will have to go back out 3-4 days for a baseline testing for the study. Its a common issues different hospitals don’t “talk” to each other and it drives me nuts! Its not that hard, I am not picking Indiana over MUSC they don’t offer the trial, but even if I was. It just shouldn’t be this difficult to get treatment.
My life lately feels like a battle, I am fighting my body everyday, and even with fluid pills I have gained 30 pounds in about 3 days, I know its all fluid, my stomach is rock hard and so uncomfortable. I am fighting to start this diet to help me lose weight, my package is “lost”. I have always struggled to lose weight, I try, but my body always fights it and it’s super difficult. I know with this disease that there will come a time I will need more help, and I want Brad to be able to lift me up when its needed. Friday I was like really God even this, He has to have some message for me in all this waiting. I am fighting to get treatment, not to make my life better but to LIVE. My dad didn’t have this option, I constantly hear ” it’s Amyloidosis and it’s too late it’s already too far into the heart” and while I know now there was not a treatment option available at that time, I can’t help but think of that everytime there is a delay in treatment. In the middle of the night when I can’t sleep when I feel sharp pains in my legs, when my hands don’t want to work, when the fluid is building in my stomach which means the heart is struggling, all I can see is the Amyloid making its way all around my body. I should know that’s satan, because 10 years ago my dad suffered greatly trying to get an answer on what was happening to him, to get an answer and know there was no treatment…but what he didnt know was God used that to help me..I am only 42 young for Amyloidosis and no dr would of even thought of it if we didnt have the knowledge of it being in my family. God was working back then, why do I doubt He is working now??
I don’t have answers but I now getting them out, has released the hold they have on me, satan cant use them against me. I am laying all this at God’s feet……calm my mind, help me see the beauty in this waiting room…help my body have a break……
I know I talk about how Amyloidosis is fatal because medically it is, at this time there is no medical cure. Dr Judge in his notes, talked about what a horrible disease this is, I think he used a lot more colorful worlds for insurance purposes. I know how this disease goes, I had a front row seat with my dad, he started where I am now, to a walker, wheelchair and bed bound. But at the same time, I know God is always working, I know God can cure me anytime, I know He can give the cure to a scientist. I also know that He can use this for someone else, my boys maybe this pushes them to be the one to find a cure, for Brad, for a stranger that stumbles on my blog. It’s a hard balance to be in the middle of what God can do, and medically what is, and to be in the will of God which at the end of the day is where I want to be. I see He is still working on me, He is still refining me……..but my fourth day is coming…..