Day 419

I am laying here running my IV medication with Elijah set up on the computer doing his spelling lessons. Then we get to read together. I really hope my pain and weakness will subside so I can give him my whole hearted attention. I love having time with him and wish I could make it last forever. Noah left this morning and that was sad. I keep thinking it will get easier but it never does. I already miss my Noah and Krys. Hope is testing this week and if you live in the area I know all of your kids are. I think it's kindof crazy to start testing the day after spring break but that's not my decision to make. 

Even though I shouldn't have to I am going to keep fighting my insurance and fighting to get the care I need. There are specialists in my condition I just can't find them or get them to treat me because their workload is overwhelmed. 

I was thinking about my grandad, Jerry York, today and all the amazing things he did in his life, from fighting in 2 wars to making it his mission to help sick kids and sit up nights praying with strangers over their children. There are so many things he will never be recognized for, but he was so much more than a great, honorable gentleman. He always put others ahead of himself and though he was human and in being so flawed like every one of us, he was truly one of the great ones. I love you and miss you granddaddy! I know while you were here you worried so much about me, but now you can sit and talk with Jesus about His plans for me!

Day 418

Sorry I have not posted in a while I have been too weak to do much of anything but sleep. I have to wait until the 21st to go to the hematologist and have no clue what I am supposed to do until then. There were 2 things we wanted to accomplish this week, get me to a facility that can actually help me with my condition and position ourselves so we can finally remodel our house. Instead we have gotten nowhere on either front except in an even worse situation. Our one tiny bathroom is completely fried. So much our family has had to deal with and the hits just keep coming. Clint planned to do the remodel all by himself, just like he replaced the sewer lines and water lines all by himself with nothing more than a shovel to work with. Just like he remodeled our one tiny bathroom by himself breaking up and hauling out an old very heavy cars iron tub. Just like he tiled and painted the kitchen. Just like he added on a master bedroom and laundry room and closed in for a master bath with not much more than an skill saw a hand saw and a hammer. Mixing concrete in a bucket with a shovel. Hainging and mudding sheet rock all by himself. He was ready and willing to do the remodel with the purchase of some tools and the supplies he needs but because we had to file medical bankruptcy we can't refinance our home to make it livable. Sorry about ranting it's just that Clint does so much for our family and he deserves so much more. He is so amazing and wonderful and sweet and so full of love and compassion. Now what? What are we supposed to do now? I can't even see straight to write anything else or find any more words except please pray whether I deserve this or not I know without a doubt my amazing husband and wonderful kids do not. 

Day 403

I don't qualify for Vanderbilt's center because my version of autonomic dysfunction doesn't fit any of their boxes. It seems like every time I get a glimmer of hope it is quickly snuffed out. My symptoms are gradually getting worse and worse. It is getting difficult to stay positive when every door you turn to is slammed in your face. Yes I have a rare disease but putting me in a box of being a hopeless case is a cowardly way of saying that I am  not worth your time. I will keep fighting until I can find someone who finds my case interesting and wants to get to the root of it before it's too late. 

I really hope and pray that I learn every lesson from this enormous trial and can one day soon use it to help someone who is in my shoes, constantly fighting for insurance to pay for bills that they approved, searching desperately for help and instead getting a universal, "there's nothing I can do for you" health care in America was already broken now it is just impossible. Thank God that in Christ all things are possible! 

Day 395

I have been having so much pain lately and I cannot seem to get any of my symptoms under control. I just found out that now that I have my insurance straight and I can finally go to Maui, that was a mean autocorrect. Of course I can't go to Maui what I typed was Mayo. Anyway now the wait list is so long they have closed it so now I have to find some other option. This is driving me insane. I am going to discuss trying to get into the research section of the autonomic clinic at Vanderbilt. Atleast it is closer and if I can get in on the research side that would be amazing.