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.
Sunday, July 13, 2014
Day 544
My heart is filled with ache. My sweet wonderful uncle Bill Lofton is in CCU scheduled to have a quadrupal bypass in th morning. Please pray for him and his family. I have never mentioned this to anyone but them but we chose Cindy and Bill to take care of our children if anything happened to us. That is how highly we think of them and how much we love them. To top that off my mom is back in the hospital and they have asked her if she wants to be put on a ventilator. For those of you that don't know, mom has Parkinson's, diabetes, and a whole bunch of other problems. Please keep my family in your prayers and pray that I can stay strong enough for my babies. I cannot fall apart physically or emotionally right now. I tend to eat when I am upset and eating and my body don't mix and at this point there is no way I can end up in the hospital. When most people ask you to pray for them a common response is that is the least I can do for you, but I always say no, that is the most you can do for me.
Tuesday, July 1, 2014
Day 532
This is going to be a wonderful but bitter sweet 4th. My Granny and Grandad were married on the 4th. My granny is the epitome of Grace and love. My grandad served in World War II and the Korean War. He was such an amazing man, not only doing everything for his family, but serving as a Shriner and being there for families all over, praying with them, rejoicing in recovery, and mourning when someone he may have only know a week is lost.
While we were in Arizona going to the Mayo Clinic he passed away. Since then we all rally around our granny and keep making all the special occasions, special. I have a good feeling that this is going to be one of the best ever.
My youngest brother and his new wife are coming in early under sad circumstances. Someone he held very near and dear to his heart has passed away.
As for my health, to look at my bloodwork I am better than normal but my body tells me different, when I am to weak to move or shaking in pain or losing 15lbs in less than 2 weeks, I know something is not right but there is nothing any doctor will change because my blood work looks so great. The worst is when people say, "but you don't look sick" but I suppose it is what it is.
Tuesday, June 24, 2014
Day 525
Sorry it has been so long. I am having some serious medical problems that the doctors are not taking very serious. My home health nurse was very upset when she heard what I was going through but my GI still just wants to put in a peg tube. One of the top Gastroparesis doctors told me years ago I was not a good canidate for a peg because I have no motility in my stomach or small bowel. I know this is pretty serious because I have been throwing up "coffee grounds" basically blood and stomach and esophagus lining. I have also lost 15lbs in a week and a half. I want to get this unnecessary weight off but I know that much that fast is not healthy. My nurse was concerned how pale I was and that my blood pressure that usually runs low was high and my pulse was high. If I just go to the hospital here I know they won't do anything.
Tomorrow is Wednesday the 25th and I know with every fiber of my being that God's blessings are going to be poured out on our family. I can't wait to share as our cup will run over. Our family is so blessed and we will never take for granted all of the blessings God has and will bestow upon us.
Wednesday, June 4, 2014
Day 505
I know I haven't posted in a while. The condition I am in at this point is going to take some time to get over. It feels like someone took a cheese grater to the inside of my esophagus, stomach, and intestines. I hope there is no irriputable damage but I am on the right track to get this latest problem solved, like I said it is going to take some time to heal that.
Noah is working as a lumberjack and a youth director this summer. The youth director I can see and I know he is young and strong and this hard labor will be good for him but it does scare me because he is just so brilliant, but I know God won't allow any harm to come to him.
I think Hope is enjoying her summer and I know Elijah is. He has friends coming and going all day. All of them are ready for the pool.
I still believe with all my heart God has a plan for me. Right now it is to be here and enjoy my family, but He has blessed me with so many different talents and I know that soon I will be able to put them to good use.
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