Am I waiting or am I in a freefall?

The entirety of this blog has been to count down the days until God heals me of an incurable disease, mixed in with tidbits of my life and family, and sometimes a little craziness. This is the 3rd night this week that I haven't been able to sleep at all. When I do sleep it is restles and full of vivid wild dreams. So may changes are happening this year. My sweet, brilliant Noah is getting married this summer and all I want to do is give Krystian the wedding of her dreams! Hope is probably going to a college science or psycology 2 to 3 week course at Tulane this summer. Senior year is right around the corner for her. Elijah is sailing through 3rd grade with flying colors. He loves to tell us how handome and smart and humble he is; that's my stinkerlicious for you!
I am just so ready to feel like myself again before I forget who that is. Either I am so sick I cannot function or I'm havinf crazy siide effects from my medicine that I can't decide if the side effects or the symptoms are worse. I miss laughing, dancing, baking, cooking, playing with my kids; Going on dates with my husband, dates with my kids, or having the best family outings. We can't even travel with the extra load of my TPN and all my meds, not to even mention that money for travel is non existant because it all goes to doctors and bills. I do have to say this, God has always provided for us. We have never had a lack of food, clothing, and essentials. God has been so good to us and I know He will see us through this as well.
Thank you for reading and praying for our family. I pray everyone who reads this is blessed abundantly and all of you needs are met by our Awesome God! I also pray that you will have true joy, true peace, and true love in your life!

Day 252

I have to admit I though by now I would be counting the days since I have been healed, but alas that was not God's plan. I always think I know what I want and how and when I want it, but I am always amazed finding out God really does know best. I shouldn't be amazed, He is God. For that matter I shouldn't be angry, sad, fed up or input any other emotion. I do trust Him, but saying that and showing that are two very different things. I am so ready to be well, to truly be with my family, to have the things I know in my heart of hearts God promised me. I really hope He is using me as I muddle through this, I am just ready for Him to use me as a healed person shedding the light on the messed up medical system in America. I am sure most doctors go into medicine because they truly want to help. I know I have a wonderful physician who is doing everything in his power to help me and because of that I am afraid he was treated a less than the wonderful man of God he is all because I went in for help with a hole in my central line and openly shared with them my medication. If I were an addict, this I know because I know many, I would hide what medication any doctor gave me and lie through my teeth to get meds I wanted. That ER could not help me and they should have airlifted me to a place that could help me instead of endangering my life. This wasn't the first time I was treated this way and I am sure it won't be the last. The first time I went to a doctor that had hospital privileges because mine did not and the only thing I requested was IV fluids. He treated me like a drug seeker then. What kind if high can a person get from IV fluids? Anyway the next day I was in the hospital for about a week, my condition didn't get better and I still could not hold down any food or liquids, so what did the hospital do? Send me home. I was back in two weeks closer to death than I had ever been before and they finally started me on IV nutrition. Gastroparesis works in cycles so I assumed my stomach would eventually allow me to eat or drink but that did not happen and 6 months ago I asked to be taken off the IV nutrition because it put 50lbs on me. Since then I have been unable to lose an ounce but I feel my hair falling out my nails are brittle and my teeth are soft, I imagine my bones are too. A test proved I have muscle weakness due to malnutrition. Next week I will start using IV nutrition again and hopefully will allow me to do more than just lay on the couch. I know I am venting here and I am sorry I am having such a hard time finding God's joy in my circumstances. I know I can do all things through Christ who strengthen me and I will cling to that verse along with Matthew 6 because worry always makes things worse. But in those verses God says that He knows all the things we need and He will provide, but we have to seek Him first, and His righteousness before we see our needs. I remember being a children's minister and how wonderful it was when God worked through me to bring little babes to Him. I would get the sermon and God would prepare the most amazing children's sermons through me. I loved being on the praise team and singing my heart out. I loved teaching children to praise God through music a beloved friend now in heaven gave me that opportunity. Before I was even married I was asked to be a children's minister by a lovely lady who would soon become a missionary. She saw what I didn't know yet and for such a long time I was so great with kids. I just has to stop committing to things I could not fulfill because I always honored my commitments until the day I couldn't. A nice young man from dish network came here today to change my hopper, as we talked he told me his name was Jamey Flintroy and he was trying to get a job at the Ouachita parish fire department. I will be praying for him, won't you join me? 

Dear Lord,

     I come before you and humble myself. I ask that you forgive my sins and don't allow anything I have done wrong to hinder this prayer. Your child, Jamey Flintroy, desires a job at the Ouachita parish fire department. Please make this and all of the honest and good desires of his heart come to pass! Be with the people that are reading these words, bless them, lift them up, fill them with true joy, true peace, and true love! Please allow me to rest and to wake up at a decent hour to spend time with You and my family. 

By the power of the blood of Christ Jesus we ask this in Your name,

Amen and Amen!

Day 228

I still need to come up with a name for my foundation so I can register it with the IRS and I know it is going to be a lot of work but after going through everything I have, I can no longer stand by and let people be sent home to die because there are no protocols in place to address their specific need. I also know the power of God's healing hand and that is why we are having a service on September 14th. I know where I want it to happen but I have to get permission before I set anything up. This service is for any and all who need healing or want to be a part of a miracle in today's time because God says He is the same today and will be the same tomorrow as He has always been. My aunt gave me the idea when she was talking about when my dad was in ICU. In the waiting room we all gathered in a circle in prayer and everybody else cleared out of the room I assume because it made them uncomfortable. But after that prayer my dad went from no hope after coding on the heart cath table twice and his enzymes were that of a dead man to normal enzymes and all of the other tests  they ran 3 times because they couldn't explain it with science and said it had to be a miracle. For a heart surgeon to say it was a miracle was really something. They even ran the tests twice the next day and could do nothing but release him. I have known since I got sick that God was going to heal me but in His time. I will plan the service but I cannot know His timing. I also know other plans He has for me but it is not time to share that yet. I set up an event on Facebook and if you want to come join the event for the particulars or message or txt me. Are you ready to see Jehovah Rapha, My God who heals? I know I am! 

Day 217

This is the day that the Lord has made, 1 will rejoice and be glad in it. This journey has been one of the most difficult of my entire life. I remember many times in my past thinking that whatever I was going through at the time was the most difficult situation I would ever face. Boy was I wrong, and I really hope and pray that this is the most difficult, that I will come through the other end of my illness that has left my close knit, strong family in tatters. 
I have prayed so often that as I went through my day that I would brighten peoples lives, that I would be a blessing, that I  would put a smile on peoples faces and hearts, that God would shine so brightly through me and use me according to His will. If you are reading this, I pray that God will lift you up and fulfill the desires of your heart. I learned long ago He wants to give us just that, but we have to understand and be willing to follow His will for our lives. He has put so many desires and dreams in my life and I have spent countless hours praying that if the desires were my own and not His, that he would take them away from me. The more fervently I would pray this, the stronger those desires took root. I know He is with me, and if God is with me than who can stand against me? I often pray scripture in present tense instead of you, me; instead of Him, You. I know beyond a shadow of doubt that God is going to use my family to bring blessings to others. My entire family wants nothing more than to serve, bless, and obey. 
My nausea is at this moment consuming me and I have been trying to will it away so I can concentrate and use my words most carefully because I understand the power of the spoken word, as well as the written word. I don't want to take my medication, I just want to feel better. Recently all of my symptoms have intensified and no matter what I throw at the nausea,pain, migraines, bloating, muscle fatigue, and weakness; they just keep getting worse. My concentration is fading quickly and it is time to go take the medication I abhor.
Tomorrow is my sweet husband's birthday and all I want is to be fully present and for him to have the best birthday ever. It is my brother, Seth's birthday as well and I pray that this will be his best birthday yet. I know he is living a great new adventure in the place he has dreamed  of living for years. Earlier this month was my Nanny's birthday and she wants nothing more than to go home but that is not going to happen for her. She loved her home just off Lake DeGray near Hot Springs Arkansas. She loved tending to her garden, taking walks in nature, and just taking in and enjoying every day. She is with my aunt in Mobile, Al. and they say she is doing so much better. Recently they were here in town but I was too ill to make it over to see them and apparently they did not want to come see me because they drove very close to my home without taking the time to stop. This used to be my Nanny's house and I know we have made changes since we purchased the place from mom, but I know that is not the reason they never came by, they never come here because they have such horrible memories of this place. It has taken a long time but the darkness surrounding this house has been lifted and new life has been breathed into it. Still I don't blame them, I cannot wait to get out of this house myself. This month was also the 33rd anniversary of my brother, Ethan's death and I feel like it was finally one of healing instead of  morbid grief. In 4 days is my mother's birthday and I pray that she will let go of her guilt and bitterness so God can heal her too. She has Parkinson's, Diabetes, Sarcoidosis, Thyroid disease, and the list goes on. 
I have written all I can for now. I lift all of you up in prayer that God would heal your sicknesses, open your eyes to His will, and fulfill the desires of your heart!