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!

Elijah

     Please pray that Elijah does not have my genetic mutation because at his age I started getting recurring appendicitis until I was 12 and has to have an emergency appendectomy, after that it was illnesses no one could figure out and no one else got sick. As an adult it took over 10 years to finally get the right diagnosis, and I don't wish this on anybody. Even last night Elijah kept trying to do things to make me feel better because he kept saying " you are so much sicker and have been for so long."
     I don't want his whole childhood to be remembered as having a sick mommy. Noah and Hope have really great childhood memories and yes Elijah does have a lot of great memories but I just want him to know me as the mom Noah and Hope know.
     Right now and all night long he has been holding his tummy from pain and I just pray he gets better right away and no one anywhere in my bloodline has the illness I have. For those of you in this world that know this illness and all the frustration that goes along with it first hand, I pray they find a cure soon and very soon because no one on this entire planet, no matter what kind of person, deserves this dreadful disease.

The past 2 weeks

     I knew I was having a bad cycle, but the past 2 weeks all I have done is sleep, wake up with severe nausea and pain, take my medicine and go back to sleep. That's 2 weeks of my life I cannot get back but I also don't want to stay stuck in this cycle and miss all of the important milestones in my family's life. I think Hope has a really great 18th birthday. Coming up shortly will be Noah's 21st birthday, Our 20th wedding anniversary, Christmas, and then Elijah's 10th birthday. All very significant milestones. Everyone who knows me, knows I really like to do things big, to make everything as perfect as possible. I have learned how to pull back because the sicker I got, the less I was able to do.
     I really need your prayers for healing, for uplifting, and to be able to start a business online to help with my medical bills and to make these important milestones exceptional! If anyone has any ideas I would love to hear about it.
     Our home is falling apart and the more Clint tries to fix things, 10 other problems show up. He is such a good man, and he devotes everything he has to us, his family. To top that off, his devotion to his job makes everyone want him to take care of their IT problems and there is just never enough of him to go around. He never fusses or complains, he just does it. His job puts so much stress on him that it is beginning to affect his health, and having one sick parent is bad enough. He is such a humble, loving, and giving man; and people take advantage of him far too often. He knows he is being taken advantage of, but he never lets the people who do this see that he knows full well what they are doing.
     He has been given great discernment when it comes to business, he just doesn't have the venture capital to take it to the next level, Through the years, every time he has said a gas station would be perfect in this spot, or a car wash would be great here; he has seen those who could afford to, put the exact business in the exact spot and it flourished. He has also seen certain businesses open and knew it was a bad idea and within the first 3 years those businesses failed. I know together with his innate and difficultly learned sense of business and marketing combined with my God given abilities and our drive for success we can make the Town of Sterlington into the City of Sterlington.

Gotten Behind

     I am sorry I have not been keeping up. Since Saturday I have been in so much pain even on top of all of my pain meds that I have basically been sleeping most all day and all night. Waking up to take medicine, and to help deal with minor things. As I am typing this I can feel my pain skyrocketing out of control, hopefully some IV fluids will help a little with that. Pray for my family because all they can do is sit back and watch.
     Pray that I will be feeling better by Friday, my baby girl, Hope, will be 18. She said a few days ago,"Ya know, I might need to start applying for colleges," and yesterday she got an email from Tulane saying she was accepted, and she got a letter from LA Tech saying she has been accepted and another one saying she has been awarded a $16,000.00 scholarship. As brilliant and amazing as Noah is, he still had to apply for college, Hope is being recruited. Baylor even called me on my cell phone. Texas A&M and Case Western are recruiting her too, along with every branch of the military. She said she has to hide from the military recruiters. I am so proud of all my children and constant see where God is blessing them abundantly. the last 2 times we went to Granny's she prayed a double blessing over Hope, and Granny has such a close relationship with God that she has some really powerful prayer!
     Okay I can't take it anymore I have to go take some meds and sleep some more, please pray for me.

Thanks So Much,

Betsy