Day 420 part 2

Positive, yea right, positive pain, positive nausea, positive heartbreak. When the pharmacy who is supposed to know your needs and fill the same thing weekly but can't even get that right because they have to order your meds 2 days after you are out is not cool. My doctor is not equipped to do what the other pharmacy group did for me and this pharmacy says it is all on my doc. I shouldn't have to fight every little thing tooth and nail just to survive. I though Clint taking this new job would resolve a lot of those issues but it has not. I am too weak to fight for myself anymore, hell most of the time I am too weak to get off this stupid couch. I am so over this. 

Day 420

This is another in a stream of seemingly endless rough days. If it's not my nausea controlling me, it's my pain, and if not that my weakness. I don't want this disease to control me. I know God will heal me but until then I don't know what to do.  When I started this blog it was all about hope and faith and it seems when I do devote time to it all I do is fuss so I am going to try to stop looking at the negative in all aspects of life. My sweet husband told me that if I devoted as much time and attention to positive things as I did do negative it would be a world of difference. That is who I used to be trusting, caring, finding the good in every situation. I have been having a very difficult time finding the good when I don't have the strength to put a load of clothes on to wash or stand long enough to wash a few dishes. Sometimes laying here on the couch I don't even have the energy to lift my arms. So what do I have? I have a family who adores me and will sit in here with me to watch movies or shows or just talk. I have a wonderful group of friends who uplift me and so many people that pray for me. I truly am blessed. When God heals me it will be not just for me but for all the world to see His mighty power, grace, and love. There is a reason for this time in our lives and I embrace it with the faith of a child!

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.