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.

A different kind of Horror Story

Guess what... I am still here, I am still sick, and I spend everyday fighting for my life. I need your help to spread awareness and understanding of this horrid disease. On a video someone made, she made the point that over 5,000,000 people have gastroparesis and the chances are, you have never heard of it. obviously, if you follow my blog, you have heard of it. But I need your help spreading the word, because there are so many people that get misdiagnosed, sometimes put in a mental ward and made to think they are crazy, or doing this to themselves, and so many young impressionable people out there believe what their doctor tells them. When I was in a medical trial with Dr, Thomas Abell, my nurse told me so many horror stories about how doctors treat and meanly mistreat patients with this disease. I was happy to be a part of research and I hope what they learned from my body will make a big difference in the medical community. I went 10 years misdiagnosed and when I got the diagnosis I was told, we can try this medication, and if that doesn't work, we can try one other medication. If that doesn't work, there is nothing else I can do for you. You see, that doctor knew first hand what this disease does and he wanted nothing to do with it. It didn't take long before I had my own horror stories to tell. I needed IV fluids and my local doctor had no hospital privileges, I went to a doctor in search of only IV fluids and after sitting in his office for hours, apparently losing 6 pounds in 2 weeks and the fact that my bloodwork did not show enough abnormality, because that is a crazy part of this illness, you bloodwork looks fine unless you know what to look for, atleast until you are at death's door. He said that I looked dry but that I was not telling him something, a nice way of saying I was lying, lying to get IV fluids of all things. He sent me home, the next day I lost another 4 pounds and ended up in the hospital. I explained the ZAP method Dr. Abell which was nothing by mouth to let your stomach rest and IV fluids, Zofran, and Phenergan. After a week in the hospital, I still could not hold down a sip of water, but since the ZAP method was not working they unhooked my IV and sent me home. It wasn't long I ended up back in the hospital. they finally checked my prealbumin and said it was a little low at 14 and put a PICC line in and started IV nutrition. Right now my prealbumin is low at 18 which tells me 14 wasn't just a little low. Before I left the hospital they put in a tunnel cath, basically a central line that tunnels under my ribs and opens 3 centimeters from my heart and i have been on IV nutrition ever since. At one point, I went to the ER because there was a hole in my central line which would inevitably land me in ICU with sepsis. The doctors did not know what to do and after several hours and many times of asking for help they said they were waiting on my results, only they had not run any bloodwork or tests. The nurse tried to get some blood and blew my vein and when she tried a second time the PA said not to worry about it and they all went in a room and had a conversation about me. They came out, labeled me as a drug seeker and told me not to bother going downtown or to any other hospital. That doctor i never saw should have been fired, but instead, stuck me with the entire bill making sure insurance would pay nothing. I finally put a call in to my surgeon, who placed the line and when they got the repair kit in they used the downtown ER to repair it. The nurse that was at the ER the first time, was at the downtown ER and she came in and apologized to me for how they treated me. i could go on and on with similar stories but that is not the reason I am writing this today, I am writing this so everyone who reads this can share it all over the world, to protect the young boys and girls and everyone faced with this journey, especially if they don't even know what they have yet. If you are throwing up and don't understand why, if you have sever stomach pain, severe bloating; I can go from a fairly flat stomach to looking like i am 8 months pregnant within a 5 minute period; if you have been told you have an eating disorder and didn't believe it at first, look up all the symptoms for gastroparesis and insist that your doctor does a gastric emptying test because it is the only way to be sure. know that your gastric emptying tests can vary because in most people it is a cyclic problem, meaning it comes and goes with no reason or rhyme. I started out like that and now my stomach and small intestines are completely paralyzed. Please share this, please help people see their condition for what it is!