Day 245

I am still awake. I cannot get my nausea under control. I pray that when I go to the doctor Thursday many of my immediate needs will be taken care of. I have to admit that while I write of my faith I have allowed a seed of bitterness take root and I seem to be taking it out on everyone around me. I pray that this never happens again because no matter how bleak things may look, no matter how weary I may grow, I must open my mouth with wisdom and on my tongue must be the law of kindness. That is from Proverbs 31 within the confounds of the wife of noble character. I am hurting and my husband is hurting and my children are hurting but instead of trusting God and trusting my sweet wonderful husband, I have been short and angry with my words. We are all at fault of this sometimes, mostly when we worry. Many years ago God had me memorize Matthew 6: 25-34. I have relied heavily on it in the past when we were both jobless and penniless as I clung to those verse I went from worrying, " What are we going to do today?" To expecting with great joy, " What is God going to do today?" I prayed then that I would never forget the lesson I was taught because I never wanted to have to be re-taught the same lesson but here I sit knowing I have not been clinging to God and His Word. By doing this, worrying and being so angry, I have allowed my illness to grow stronger and have inflicted more pain on my family than my illness ever could. Thank God I have such a loving and forgiving family. They gently let me know when I am being impossible and keep right on adoring me. My family is my greatest blessing and I want nothing more than the absolute best for them. My amazing husband deserves to be able to make more money with less stress and have his sweet wife back. My oldest son deserves to have all the desires of his giving, loving heart fulfilled. My sweet daughter deserves to be a child, a silly, sweet teenager, not an old soul with the weight of the world on her head. My baby boy deserves to have his mommy back, to have a blast learning in school without me being short or angry with him for just needing a break. I must treat myself better as well. I have long been determined not to let my illness control me but I forgot to check and see if it was. I cannot help it when my nausea is so strong that it consumes my every ounce of being or even my pain for that matter. I cannot control when I have a migraine. I cannot control when insomnia ensues. But I can control how I react to all of these things, and even when things seem impossible I have to see the possibilities I have. When I cannot get off the couch, I can always read with my son or talk with my family. When I do have strength, I have to know my limitations and not try to conquer the world just because I don't know when my next chance will be. Pray that I will hold to these truths because when I am weak, God is strong. I believe at my weakest is when God can use me most, but I have to let Him. If you are reading this I pray that you will not have to learn these truths the hard way and I pray that God would fulfill the desires of your heart because I know He will fulfill mine!

Day 243

I had a pretty good day today. We got through every subject in school but the way it's set up we only have to do a few subjects a day. I have been stretching and working on moving a bit trying not to overdo it. I spend most of my time on the couch so it won't be easy but I will dance! Little by little. I have had to learn my limits and that has been hard. I don't drive, shop, or hardly ever go anywhere. I try not to make commitments or plan events I cannot keep. I daily learn more limits and that gets me really down sometimes. Right now I am reaching out to all of you reading this to help me make my daughter's sweet sixteen all she wants it to be and more. There are people following all over the world. I hope you have all read the post about her birthday day 201. There is a link to our Paypal account on here and anything you can do to help would be so appreciated. Thank you so much, those of you who have stepped up and are going above and beyond. There are no words to thank your kindness. Please keep praying for my family and know I am praying for every person reading this blog, that God will bless you and supply all of your needs, needs only you and God know. 

Day 242 I will dance with the #faithofachild

I have another interesting story to tell if you are eager for a deeper look into my soul. I think I was born a dancer. They say once a dancer always a dancer and I hate to say it is true. Though I no longer have the body of a dancer it is still ingrained in my soul. As a child I took ballet and I loved it. Just as I was to start Toe I changed schools and left ballet behind. It would be 4 years before I returned to dance my Sophomore year I made the dance team and just as I left ballet before I started Toe, I left the dance team before becoming a UDA all star and state champion. The reason I left ballet was because I though I could leave my childhood pain behind with it. You see I never cracked, never cried, never broke, until my mother was 10 minutes late picking me up from dance class. I was the only child left there and as I sat on a swing waiting I began to wail, crying without consolidation. I remember that day well but I didn't know my did. She wrote a story about it. I always seems so strong so unshakable. When Ethan died I asked her the hardest question you can ask a grieving mother, "Why does he look like that?" She explained that he was swollen from the bruises and the other was where his bones had broken. She answered with such composure but she didn't know that she didn't really answer my question. He looked like that because he wasn't there, that was just a shell. For those few years she thought I had it all together until she came to get me from my dance class. She knew I wasn't crying because I thought she wouldn't be there, it was because I was so fragile and just 10 minutes made my whole world come crashing down on me. I knew Ethan would never be back and I knew I could lose anyone just as quickly. 

I didn't leave my pain behind with my ballet, I always found comfort in dance. Now you ask why did I leave the dance team when I was at the top of the heap? I was still just as fragile and when I had been cut from the easiest dance of the year without explanation of what I had done wrong I broke again. I continued to practice for the championship but I knew they were all talking about me, even the teacher, our sponsor, who was supposed to be my support was talking about me behind my back to the other girls. That was the day I decided to leave. I still loved to dance and would do it in my own way and my own time. As my family grew we would dance together all day long. I would put on music and dance as I cleaned, cooked, and took care of my children. One day several months ago I was in my room listening to music with my daughter and the song from flash dance came on and I could not help myself. I sang with all my strength and danced as if nothing were wrong with me and my daughter just smiled. She saw a glimpse of the mom I was before I got sick. Just now I was in the kitchen and stretched and danced as if I were still a ballerina. Dance is still in my soul and I will use it to claim my body back. Even if my nutrition has to come from an IV and I have to take medication every day for the rest of my life, as long as I have a spirit within me I will sing and dance for me, for God, who gave me the gifts, and for my family, who are my greatest gifts!

Day 239

I have tried the extent of this blog to keep the gross factor out of it, but let's face it gastroparesis is gross.  Just a little while ago I ate knowing what it would do to me, but I want you to understand what eating does to someone with full blown GP. First and almost immediately after eating the nausea takes over to the point that you cannot concentrate on anything else no matter how hard you try. Then the pain takes over normally followed by bloating like you are 8 months pregnant within 5 minutes. If you happen to be in public people mention your non existent pregnancy because it looks so real. Even though you are on a consistent dose of pain medication  your body doesn't seem to know it because you just want to curl up in a ball in the corner and cry it hurts so bad. Finally you get a chance to go to the restroom and you pee but it doesn't matter because in just a few minutes you are going to be throwing up so hard that you pee on yourself, you pull muscles in your back and chest, If you ate bread it gets stuck in a ball in your esophagus and that often chokes you. There are the heart palpitations and then something more terrifying than the choking and palpitations combined, you cannot stop the steady stream of throw up and you realize you are drowning in your own puke and just before you are about to pass out, you know you can't gasp for air because you will just aspirate the throw up and truly drown. So you find a way to cut off the flow, cough so nothing is left in your airway and finally gasp for air. then you can blow all of the puke out of your nose and start all over again. On the flip side, you go from severe constipation to impactions, which I hope no one reading this knows what that is or has to deal with that ever. Let's just say very painful. From that you go to severe diarrhea, acid burning hours long diarrhea. It is no wonder most gastroenterologist don't want to deal with this disease. After all that now you are wondering why I ever put any food in my mouth, and for a very long while I did not and was on complete IV nutrition. On IV nutrition I gained 50 pounds so I asked to be taken off of it about 6 months ago. The problem now is I have not lost a single ounce but my body has become progressively more malnourished. My body won't let go of any weight because it is in starvation mode and currently cannibalizing itself. My bones and teeth are getting soft, my muscles show weakness due to malnutrition and my bloodwork shows anemia and off the scales low on vitamin D.  As soon as I am able, I will go back to my doctor and return to full IV nutrition because I cannot live this way another second. It has made me mean and ugly even to my precious family who adores me and only wants the best for me. I wouldn't wish this disease on anyone, but the worst part about it for me is not the gastroparesis which is just a symptom of the genetic disorder I was born with. A genetic disorder that systematically shuts down your organs. First was my appendix at age 12 after a few years of similar symptoms I described here only with added fever and sleeping on the cold tile bathroom floor because it hurt to bad to move and I had a consistent flow from both ends. In 2008 it shut down my gallbladder, after having it removed there were no stones, just craters like you see in the moon, a tell tale sign that my disorder that caused my gastroparesis and now my small intestines to be paralyzed. I know what follows, the duodenum, the liver, and pancreas, organs you cannot live without so if we cannot find a way to stop my body from shutting down anymore the my final option is a multi-visceral transplant, something I really hope to avoid. Prolonged gastroparesis symptoms can lead to POTS Postural orthostatic tachycardia syndrome. I am already having symptoms of POTS and CIP Chronic Intestinal Pseudo obstruction but I have not been formally diagnosed with either. Anyway that is a very literal look on the inside of what I live daily. I know people have a hard time understanding and even explaining it to others, well now you have to look no farther because here it is in black and white.