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. 

Day 292

Sorry it has been so long since I have written. I have been overwhelmed with nausea pain and all of my other lovely symptoms including massive migraines. The world recently lost an amazing angel of a woman, a very dear friend and important prayer partner. Amy Johnston will be missed by so many people and I can't wait to see her in heaven one day so I can give her the biggest hug ever! Please pray for her husband, Micheal and their 2 boys. 

After seeing the best GI doctor in the area and he reviewed my Mayo Clinic work up I got the same resounding nothing I can do. We just have to keep putting a bandaid on the gushing artery and wait for the need of a multi visceral transplant. We are going to continue to try to get to the neurologist guru on my autonomic dysfunction that caused the gastroparesis in Jacksonville at Mayo there so we can finally get the neurological and genetic testing to get to the bottom and either get a treatment plan for that or a final nothing anyone can do so there will be no doubt when God steps in and places neurons that were never there and heals me completely! 

I am sorry if I don't keep up my blog regularly but lately I have been having trouble keeping up with my life.