Kim

     I know Kim doesn't want me to place this post and that is exactly why I am posting it. Clint's oldest sister Kim had really been a rock for me the past difficult months. If she sees my house needs to be cleaned she just does it, no point in arguing with her because she is just going to tell me I need to save my energy to enjoy my family. I have been so sick for so long that I cannot remember what it is like to be well. If I am resting, she will come keep Elijah company until I can get up to teach him or until Hope comes home. Clint, Noah, Krystian, Hope and Elijah are my family but we are so tight knit they are my best friends and I have to put Kim in that intercircle of best friends. I know people have issues with her and it's not up to me to say how she is with anyone else. But she is my friend, my confidante, and probably my biggest advocate as far as letting people know what I have and she sees day in and day out how I am feeling and it just makes her heart smile to know when I am having a good day.
     All of the sudden as in yesterday there is not an inch of my body that does not hurt, inside or out. I have no idea what's going on with me but my sweet Clint is trying to get me to sleep as much as I can but everytime I wake up, it feels like I have been thrown off a building time and again,. From my relentless migraine to what feels like bleeding and bruised organs to my skin feeling like fire ants are crawling under my skin. I am taking my nausea and pain meds around the clock and it just feels like I am throwing dust in the wind. Even Kim's Christmas cards contained information about my rare disease. Autonomic Autoimmune Neuropathy or AAN causing my gastroparesis, my gallbladder to stop working, and even when I was a child causing my appendix to have recurring appendicitis until I was 12 and had to have an emergency appendectomy. That is what this wretched disease does, causing my organs to quit one by one, the newest being my small intestines. I still know with all my heart God is going to heal me in His time and His way and I know he is going to use me as a voice for the voiceless, as an advocate for these health issues doctors either overlook, or don't want to deal with. I want to empower the patients, but I also want to set up a program that trains doctors in the  treatment and signs of these rare diseases. I can only hope, you, all my friends, family and aquantices will help spread the news. That young girl that didn't have any body shame but now can't stop herself from throwing up, don't automatically assume it is an eating disorder have a gastric emptying test and if that shows up normal then and only then should you treat it as an eating disorder. Young people don't know why their body does what it does and they need their parents to first see if it is a medical issue or an eating disorder. Eating disorders are very real and can be very harmful, even sometimes leading to gastroparesis but please rule that condition out first.
     I cannot type anymore because my hands even hurt so bad. Please pray this is something my body can get over.

In the midst of the madness

     I know this is a crazy time of the year for all of us. So much to be done, so little time. I hate all the social settings where you feel like you have to eat even though you know what it's going to do to you. There's always the option to not eat, but that just makes people feel uncomfortable about eating in front of you. I used to do so much for Christmas with my kids. We made my famous "Heavens To Betsy's Gourmet cookies." we made stockings for all of our friends and family and on top of the cookies we made all kinds of candy, from peanut butter balls to coconut balls, toffee, fudge, turtles, candied pecans, For a while the kids tried to keep it going, but they did not know how much went into it and how worn out they would be. I did all the main stuff and when I stopped they got overwhelmed so we changed the traditions. We stopped running all over creation on Christmas day and decided to let the kids really enjoy their Christmas. Everyone knows if anyone wants to come here, they are more than welcome, but we try to spread out family gatherings. These days it seems to take so little to knock me on my keister. With my dad in the hospital, that just magnifies things.
     But as I was saying in my title, in the midst of the madness tomorrow My sweet, amazing, wonderful, handsome gentleman Clint and I will be married 20 years. I seem to have been sick more of those years than not and it has really taken its toll on our whole family.
     Don't get me wrong, I would no change one moment of my life, from the heartbreak, sorrow, loneliness and now the illness have all come together to make me the woman I am today. The person God created me to be, and eventually the voice for the voiceless and change the world one moment at a time. Thank you all for lifting our family up in prayer, know that we feel the effects of your prayer.
     I am going to try to rest a bit now, wish me luck!

Doctor

I am sorry I have been way to sick to write in here or do just about anything. My symptoms hit me like a freight train. No matter what medicine I take, no matter how much I cannot control my nausea or my severe pain and migraine. I am doing a lot of sleeping just to try to not feel. But that really doesn't work even asleep my pain is still there. I am so weak and shaking in pain and weakness. I am ready to be better

Another loss

     I write on here knowing that God is going to heal me. Knowing that He is using me as a voice for motility disorder, gastroparesis, and Autoimmune Autonomic Neuropathy, and yet people are dying daily starving to death for a cure. An 18 year old was lost to this dreadful disease. It makes it hard to be excited knowing I am going to be healed when babies are dying.
     I try to hide how sick I am but that has not only not worked, I know my kids, my babies who I am supposed to protect and be a safe place for cry in secret for me. The latest thing I found out was my sweet Elijah went to spend the night with his brother and was feeling very bad but instead he acted like he was fine and when Noah walked out he would grab his stomach and say oh ow this really hurts, this hurts so bad, and when Noah would walk back in he would act illiterate he was fine. Unintentionally I taught him that.
     My doctor has told me that it is just a matter of time before they take away my central line and IV nutrition and try to put in a feeding tube. The world renowned expert on all things gastroparesis knows and has told many doctors that I am not a good candidate for a J/G tube. My oldest, Noah is a JR in college and is already being paid for research in Biomedical Engineer and I know he will do everything in his power to help. My daughter, Hope is going into Genetic Consoling. My children will fight for research, they will research and find a cure, but they need to be funded. Doctors and patients both need to be trained how to approach this horrid disease and given new forms of symptomatic relief and eventually a cure. Please pray that we can stop #starvingforacure and stop losing young innocent lives to this atrocious disease.