This is my journey to healing from a rare and ugly disease. I hope to be an advocate for all rare diseases that are often misdiagnosed or worse left to think it is not real.
My Reason
My sweet Elijah has used every wish, every prayer, every day to ask for my complete healing. I knew in 2008 because God told me when I first started getting really sick that things were going to get much worse but He would heal me only when His timing is right and He receives the glory for my healing. For those of you that do not know, I have Idiopathic Gastroparesis caused by a genetic condition known as Autonomic Dysfunction. I am currently on IV nutrition through a central line and on several medications. I had a gastric pacer implanted in 2010 to alleviate some of my symptoms and it worked well for 6 months but my nerves quit responding and I finally had it removed this January. In other words it did get much worse. I start this blog now because I know God will not let my baby's faith die.
Wednesday, October 30, 2013
Day 290
I have to say it has been a rough week. I can't even chew gum without throwing up. I am going to keep this short because my pain is not letting up and my nausea is inscesent. To top it all off I have a migraine coming on so this week is turning out to be a real winner.
Sunday, October 27, 2013
Day 287 Fear not and look back on this when you are tempted to!
This has been such a long and treacherous storm. I have let it beat me down, weaken my faith, fill me with fear, and worst of all remove me from the closeness with God I desire more than anything in this world. In so doing it has hurt our family, our faith, and our outreach. I have to apologize to God, to my family, and to all of you for allowing fear to rule in a time when I should be clinging so tightly to God. "Fear Not" is the command most used in God's word, I knew that but was reminded of it today. There is a huge reason for that. Life, everyday, is full of circumstances that can cause us to fear. When Noah was little and so afraid because he had insight into the spiritual world that most do not, God showed me 2nd Timothy 1:7, " For God has not given us a spirit of fear, but of power and of love and of a sound mind." That struck me as kind of funny because Noah's first name is Timothy. Through the years I shared it with my other children, and told them every time that fear overtook them to recall that verse. That verse along with the fact that fear is mentioned more than 500 times in the KJV Bible and "Fear not" or "Be not afraid" is written 103 times. God knows our first instinct is fear and that is why he reassures us so many times. Fear is a funny thing and 2nd Timothy 1:7 clearly tells us fear is not from God, so if it is not from God, then it must be from the devil himself. I always thought he used pride the most to trip us up, but while he uses that a whole lot, he uses fear to keep us from God's best for us. I have allowed fear to hinder my trust in God. I have known all along of His healing power and how He is going to use me in a mighty way through healing and bringing awareness to rare diseases that are treated like leprosy by the medical community. Very few doctors want anything to do with something they cannot understand or fix. From this moment on i am going to try my best not to let fear interfere with what God is doing through me, but I need your specific prayer to understand when fear is creeping in and to nip it in the bud. I am prepared for whatever comes next, and I want nothing more than for god to use me in a mighty way. I love the song. "Sometimes He calms the storm, and other times He calms his child." Right now He is calming His child and the storm rages on and I know he is going to use this in such a mighty way. You can look back on my posts and see the days I let fear rule me, and you can see the days all I could do was let you know I was alive and what was going on physically. This blog is so much more than that, if you read what it is about, it is all about my baby boy and his Faith that God will make his mommy all better and that is why when I tweet or put it on Facebook I try to use the #faithofachild, because that is what this is all about. I am counting down the days until God heals me and after that I will count the days after healing and share all the amazing miracles God is doing daily in our lives and the lives of those around us. It is funny, even though I just got out of the hospital and I know I am about to have another surgery, it is like the weight of the world is lifted off of me. Thank You God. I now understand when the devil couldn't make me fear my illness, he filled me with financial fear, fear for my children, for my husband, fear of the silliest things, anything to keep my faith from growing because now he is filled with fear and there is nothing he can do to me!
Friday, October 25, 2013
Day 285
I came through surgery perfectly. I am now waiting on a temporary PICC line so I can get my nutrition and meds until my line can be replaced. I have been waiting for 2 hours for my nausea meds and I am starting to get very angry because I am getting so sick. I hope I don't have to stay in this hospital too long. I hate I am missing Hope's homecoming week, and I can't go see Noah this weekend. But it is what it is, and I am surrounded by so many Godly people! Thanks for all the prayers! They are still much needed!
Thursday, October 24, 2013
Day 284
This is crazy. I was so relieved, thinking I was in the clear. My initial blood cultures were normal and though I fell like total crap I was so happy to know I could be home. Go see my baby girls performance tomorrow and Friday and be here to help her get ready for homecoming. Now I have been thrown for a loop. I got a call from a doctor telling me I need to go to the hospital tonight and when I told him I haven't had a fever since Sunday he said I could wait until in the morning. What this means is I have to get on IV antibiotics, have an emergency surgery to have my line removed, likely collapsing my vein. Then stay on IV antibiotics until my blood is clean and have another surgery to have another line placed. This time in my jugular. I thought for sure this was going to happen, then thought for sure it wouldn't. Now it is. Please keep me in your prayers. Also my sister in law Kim found lumps in her breast and she won't know for sure what it is until they do a biopsy November 4th so please pray for her. I know she is scared and she is trying to be so strong for me but she covets you prayers! Also her friend also named Kim went to the ER today with a possible ruptured appendix, so yes please more prayer. I just know God is about to do something really big because the enemy is trying to break us with full force so I know that means he is running scared and he should be!
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