Day 429 part 2

I got to sleep at 4 am and didn't want to get up and go to the doctor but I did and after dropping Hope off at school and Clint at work my doctor called in sick today so I have to wait until tomorrow to see him. The good news is Elijah and I got to spend the morning together in town and even got to go see Amanda's mom. I forgot how week I have been and when we went into Best Buy to look around it hit me and I knew I couldn't collapse in the store and cause all that drama so we found an XBox One set up so I let Elijah play while I sat on the floor in the middle of the isle like an idiot. Then I remembered how hard it is these days to get off the floor. I finally got myself together and we went to the car to sit and listen to some tunes on The Cross on the last day of their spring shareathon. Finally I was able to go get Clint and he brought me home to rest before we went to see the GI doc. That was the most promising visit I have had in a while. He will sign off on my TPN and IV meds as long as the company has certified nutritionists, diations, nurses, and pharmacists. He is also getting me a visit with a really good local neurologist that if he cannot help me he can send me to somebody who can. Baby steps but at this point they are the most beautiful steps I have seen in a while. Hopefully I will sleep tonight and hav a good doctor visit tomorrow. Thank God I have my wonderful husband to take care of me when I need it the most. 

My moms health is not so good so please pray for her. They decided not to do the heart cath today because she didn't have enough blood. 

On a much better note I am so proud of my Noah. He was awarded Freshman Engineer of the Year out of 400 students in the hardest program Tech has to offer! His character and brilliance are true gifts from God! I just have the most amazing family!

Day 429

Yesterday was quite a doozy. After being up all night Monday with my thoughts an hour after I finally went to sleep 9am I got a call from my dad saying mom was in the hospital with chest pains. I had my usual insomnia migraine and I got some very disheartening news about my medical situation. I took care of all the much needed business that I could after about an hour of sleep then my body made a choice, break down or shut down, so I just went to sleep. I awoke 2 hours later and had a nice evening with my family. Tuesday night I had a full night of sleep and Wedbesday I awoke made sure Elijah had food talked to the bank then shut down again. This time I slept all day and most of the evening so I am not surprised that I am awake. The problem is that in just a few hours I have to get up and take Hope to School and Clint to work so I can go to one of my 2 doctor appointments tomorrow and I am so nervous because I have been hitting so many brick walls so hard lately that I am afraid I might lose the best doctor I ever had because like all the others there is nothing he can do but help me manage the symptoms and my symptoms are out of control with everything we are throwing at them. I have another doctor visit Friday.  I am afraid of every one of these appointments, have no idea what to expect and less and less reason to be hopeful. I put a call in to the neurologist in New Orleans who said he couldn't help me but knew a doctor that was a guru in my condition. He referred me last year and the week before the appointment my insurance refused to cover it. Now that I have new insurance I tried to set up the appointment on my own at my local doctors advise but the wait list was so long they were not seeing any new patients. I am still hopeful that either my dr or this neurologist can get me an appointment with the guru or someone else who can help. I just hope I don't break down completely and have no words for my doctor. Our house is falling apart right along with my body and there is nothing I can do about either one of these situations so here I go. I let it go, give it all to God and don't want to take any of it back. Lord, I need you now more than ever. Only You have the power to heal me and fulfill the desire You put in my heart! It's all yours, I won't try to do it my way anymore. I wait for You, I give it all to You, Your will no matter what that may be is the only will I want!

Day 427

Here I am at almost 4am awake and alone with my thoughts and my pain and other lovely symptoms. Even though I am awake I am so weak that I have to hold on to the wall just to make it down the hall to the bathroom. Sometimes I will go 2 or 3 days with little or no sleep, other times I will sleep for that long only waking up a few hours in between. I feel like I am banging my head against a brick wall just trying to find a doctor that will understand and care about my case. Someone that can help me. I know God has a plan, I just wish He would clue me in even just a little bit. This I do know, I am one more day closer to my healing than I was yesterday. It is so humbling and awesome to know that the God that created everything, every universe, knows me and cares for me... Less than a speck of dust in the majesty of it all and He has a plan for me. Healing is only a small part of that plan. I can see a glimpse, fragments of a vision and I know with every fiber of my being that I am His vessel and He is going to do mighty works through my family.

I really hope I am not just writing these words for my own benefit but that every post I make helps someone in some small way. I want more than anything in this world to make a difference, to keep at least some people from pain or give them some hope in their current situation. I began writing this journey because I know the faith of my baby boy does not fall on deaf ears. I can't wait to change the title of my posts from counting down the days until I am healed to counting up the days since I have been healed and share all the amazing things God is doing through us. Stick around if you want to be truly amazed!

Day 421

Still can't get rid of this migraine. Thank God I was able to get my IV Phenergan today. Took a migraine pill and still nothing. Hopefully my doc can try something else that actually works. I was told today that insurance would no longer allow the best doc ever to maintain my TPN because they require a gastrointerologist. Bad news is the best gastrointerologist I know of no longer handles TPN. I give up. I am tired of fighting and bucking and scratching and clawing my way to try to get someone, anyone to help me. I truly give it all to God and will do my very best not to let my mouth interfere. Pray for me on that one. 

Last night I had the most aweful memory from when Clint and I were very young and very poor and so in love we made people sick. We are more in love than ever now, we are less poor, and much less young. But though we had a 1 bedroom apartment and an amazing little boy I knew I was pregnant. It was exciting and scary and wonderful and I made a huge mistake. I went to someone I trusted to confirm the pregnancy. The entire time I was there I was being told I couldn't support another child that it was a very bad idea but I knew God would provide for us. The problem was the person I trusted didn't have any faith in me and had the doctor compromise my cervix and tell me I was never pregnant. I didn't know for sure until we were having our baby girl and I saw the tool used to break my water to speed the delivery. I thought I had put this long behind me but it still cuts to the core. I don't believe in abortion but even if I did it would have to be the mothers decision not a meddleing third party. After that memory last night I saw the same thing happen on a tv show today. I can no longer have children because of my severe illness but I have often either in a dream or a vision seen the most beautiful green eyed dark brown curly haired little girl. I think her name was Melody Grace. For a long time I kept thinking she would come into my life somehow but now I think she's been here all along. I can't wait to meet her in heaven. I know this post is way off in left field and I have forgiven the person who thought they had the right to make a life decision for me the same as I have forgiven the person who thought he had to right to put his hands on me long before I met Clint. 

This blog is all about healing. When you think of the lame man lowered into the house Jesus said,"Your sins are forgiven". Then he heals him physically so I guess this is part of my healing process. 

All you ladies out there grieving the loss of a child whether by miscarriage, abortion , or death after a time with them; God can and will heal you. I know you think the pain will never go away and to some extent that's true but it can blossom into something beautiful if you are willing. It might help if you write in the comment section the name of the child that would have been or was as a release , a breakthrough, or even just a goodbye! I'll see you as soon as God's plan for me here is done my sweet Melody Grace!

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.