Day 261

I know I have written in here like it is a personal diary and when I am filled with negative emotions, like all of us sometimes become, I have put it out here for the world to see. I really hope that it just shows you I am human, not much unlike yourself. This illness has taken so much from my family and that is where I put my focus but I have to be honest and say this illness has taken so much from me and it makes me sad and angry. I know the potential I have and it is being wasted. Anything I ever put my mind to I excelled in and refused to stop until I was the absolute best I could be at it. If I had stayed with the bank I would have been a bank manager and moving into the back office. If I had stayed a children's minister, so many kids would have their lives changed for the better. Yet here I am sitting on this couch wondering if God will ever truly use me again and I can only hope He is using me through this written word. It seems to be all I have left that I can do at this time. 

God has shown me that He will use me and He has shown me where I will be, but He has not shown me when or how and I know that is for my own good because when something is revealed to me I tend to try and do it my way and make it happen on my own. The funny thing is, as soon as I see that I don't have a snowballs chance in hades of getting it done and I let go, that is when God goes to work. It is funny because He has taught me this lesson so many times before but just like the Israelites in Exodus I forget all to quickly. I often pray that I will get everything I can out of a certain painful lesson so I will not have to learn it again and yet I still forget. Reminiscent of the Disciples in the garden during Jesus' darkest hour, instead of be what He created me to be, I am in essence sleeping. I don't want to "sleep" anymore. It is funny I would use those terms when in fact I did not sleep much at all last week and I have spent the last few days and nights sleeping in the literal sense.

Thank you so much for sticking with me through my good and bad writings. This outlet has truly helped me to see things in a different light and having so many followers has blessed me and I pray that I can be of help, even if to only one soul, than it has all been worth it!

Day 258

Thank God I am finally back on my TPN. After going through a major impaction I am starting to feel a little better. I have to say this was one hard day and I hate my sister-in-law got here while I was shaking in pain and unable to hold my tears back. I hate for anyone to see me at my worst, knowing there is nothing they can do to help and nothing the hospital will do to help. On that note, if anyone knows of a place far from here that needs a system administrator or an IS team lead I would love to hear about it so my wonderful, amazing, sweet husband can put in for it. I always thought I would want to live in one certain place or another, but where ever God may want us to go, I am there. I am ready to be somewhere that people are compassionate and care about their job and their town. A place where I would be proud to call my home, where healthcare is not a joke. Even before my Grandfather passed away he would say the hospital here is where you go to die. I believe they caused his death because they drew a large amount of fluid from around his heart and lungs and sent him home. I know he was weary and ready to go home but I remember him talking to me about many of his friends who went in for something simple and by the end of the week they were dead. I know it is but by the grace of God they did not cause my death because I have many accounts where protocol was not followed, and my life was endangered by the very people who were supposed to be helping me.
I know I keep talking about it, but I am so passionate about anything I can do to help people who do not have a voice of their own. My illness has taught me so much about life, people, pain, and humility. At this moment I have no idea how we are going to make Hope's birthday all she wants it to be. I have no idea how we are going to go to Ochsner and see the neurologist that if he cannot help me, he can lead me to help. I have no idea how we are going to get caught up on our bills or buy groceries to feed our family this month. Here is what I do know, in Matthew 26, God tells us not to worry about these things. He knows what we need and as long as we seek Him first, then He will supply all of our needs. I have personally seen this time and again. Besides worry always makes my symptoms worse.

Day 253

   I am so happy we were able to make beautiful, elegant invitations for Hope for very little money. She is happy with the colors and the bling and I am happy for her. I go later in the morning to check out the space since I haven't seen it for years and I pray that it is everything we need and we are able to taken pictures that make Hope happy. I fell asleep early but awoke as everyone was going to bed. I hope I can get back to sleep soon. 

   A while back Clint showed me the video "What does the fox say?" and I loved it, Elijah can't get enough of it and Friday Ellen had the brothers from Norway that made it, I thought that was pretty cool. 

   My dietitian should be calling me to interview so she can make my ton formula and get it and my medication to me by Tuesday. 

   I am still absolutely enraged at what my honesty caused an ER physician to label me, cause my doctor problems, and even have my insurance refuse to pay their own physicians for my waste of time that could have cost me my life. This is not the first time I had such an issue and I know I keep talking about it but I cannot help but think of all the lives the doctors endanger and the people and their families that were not a blessed as me and actually lost their lives due to disrespectful neglect. It is the whole reason I started this blog. I want to educate people on rare diseases and how physicians take the Hippocratic Oath to do no harm, to not act as gods, and to do what is in the best interest of their patients. I fear most doctors care not about the individual but about the bottom line and when you come across a doctor that cares about the patient someone works to stamp that out. 

   I hope my writing is not a bore to anyone and is something people look forward to. I know I need to let God guide me as he works through me to heal me and help others. If anyone has any suggestions or words you wish to share, I hope you will feel free. 

   I pray this will be an amazing week for all who read my words. I pray that God will bless you in all you set to do this week, and fulfill the desires of your heart. I also pray that all who read my words will not be mistreated by anyone in anyway for any reason. God bless you all!

Day 252

I have to admit I though by now I would be counting the days since I have been healed, but alas that was not God's plan. I always think I know what I want and how and when I want it, but I am always amazed finding out God really does know best. I shouldn't be amazed, He is God. For that matter I shouldn't be angry, sad, fed up or input any other emotion. I do trust Him, but saying that and showing that are two very different things. I am so ready to be well, to truly be with my family, to have the things I know in my heart of hearts God promised me. I really hope He is using me as I muddle through this, I am just ready for Him to use me as a healed person shedding the light on the messed up medical system in America. I am sure most doctors go into medicine because they truly want to help. I know I have a wonderful physician who is doing everything in his power to help me and because of that I am afraid he was treated a less than the wonderful man of God he is all because I went in for help with a hole in my central line and openly shared with them my medication. If I were an addict, this I know because I know many, I would hide what medication any doctor gave me and lie through my teeth to get meds I wanted. That ER could not help me and they should have airlifted me to a place that could help me instead of endangering my life. This wasn't the first time I was treated this way and I am sure it won't be the last. The first time I went to a doctor that had hospital privileges because mine did not and the only thing I requested was IV fluids. He treated me like a drug seeker then. What kind if high can a person get from IV fluids? Anyway the next day I was in the hospital for about a week, my condition didn't get better and I still could not hold down any food or liquids, so what did the hospital do? Send me home. I was back in two weeks closer to death than I had ever been before and they finally started me on IV nutrition. Gastroparesis works in cycles so I assumed my stomach would eventually allow me to eat or drink but that did not happen and 6 months ago I asked to be taken off the IV nutrition because it put 50lbs on me. Since then I have been unable to lose an ounce but I feel my hair falling out my nails are brittle and my teeth are soft, I imagine my bones are too. A test proved I have muscle weakness due to malnutrition. Next week I will start using IV nutrition again and hopefully will allow me to do more than just lay on the couch. I know I am venting here and I am sorry I am having such a hard time finding God's joy in my circumstances. I know I can do all things through Christ who strengthen me and I will cling to that verse along with Matthew 6 because worry always makes things worse. But in those verses God says that He knows all the things we need and He will provide, but we have to seek Him first, and His righteousness before we see our needs. I remember being a children's minister and how wonderful it was when God worked through me to bring little babes to Him. I would get the sermon and God would prepare the most amazing children's sermons through me. I loved being on the praise team and singing my heart out. I loved teaching children to praise God through music a beloved friend now in heaven gave me that opportunity. Before I was even married I was asked to be a children's minister by a lovely lady who would soon become a missionary. She saw what I didn't know yet and for such a long time I was so great with kids. I just has to stop committing to things I could not fulfill because I always honored my commitments until the day I couldn't. A nice young man from dish network came here today to change my hopper, as we talked he told me his name was Jamey Flintroy and he was trying to get a job at the Ouachita parish fire department. I will be praying for him, won't you join me? 

Dear Lord,

     I come before you and humble myself. I ask that you forgive my sins and don't allow anything I have done wrong to hinder this prayer. Your child, Jamey Flintroy, desires a job at the Ouachita parish fire department. Please make this and all of the honest and good desires of his heart come to pass! Be with the people that are reading these words, bless them, lift them up, fill them with true joy, true peace, and true love! Please allow me to rest and to wake up at a decent hour to spend time with You and my family. 

By the power of the blood of Christ Jesus we ask this in Your name,

Amen and Amen!

Day 250

I went to the doctor today and got my medication and nutrition taken care of. I will try to go back to the neurologist at Ochsner and see if we can either work with the neurologist at Mayo through peer to peer conversation or do what needs to be done to get me approved to go to Mayo. I am working hard on Hope's party and am unsure how I am going to get everything taken care of in time but I trust God. I got the card stock for her invitations but need a definite answer on the location and still have to get ribbons and jewels for embellishments. I hope we will be able to take care of that this weekend as well as decorations and deciding on food and all that fun stuff! I am glad Clint was off today because my appointment was not put in the system because a new girl was helping when I called. Even though my appointment should have been at 8:30 we had to wait until almost 11:00. I do hate that when we got home I slept most of the day, but Elijah got to spend the day with his daddy so I guess it was worth it. I really hope my meds get sent quickly!

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.

Day 237

Food is my greatest nemesis. We are supposed to have to eat to live but it is literally killing me. Every day I wake up and say I will not eat today. But it may be a few hours or most of the day but I finally get so hungry that I put food down my throat knowing that not only is it going to come back up, but first it is going to cause me to be doubled over in pain and start a migraine. Most of the time it does so much more too. So at that point I stick to my resolve until I start feeling better, then I smell something or see something that looks delicious or I just decide I am going to eat and the vicious cycle goes on. I have been off TPN for 6 months and it put 50 pounds on me and 6 months later it is still here. I can only assume my body is in starvation mode because I know I have muscle weakness due to malnutrition. I was so excited about going to the doctor tomorrow and now I am in so much pain and so weak that I cannot drive myself. I have to take my meds now and pray they will at least lessen my symptoms. 

Day 236 My Birthday!

I have to say I had the best birthday. For the first time in a long time I don't feel so sick! I know that doesn't mean I need to eat or do anything to trigger my symptoms but it has been the best day! I slept all night which is a huge accomplishment in itself. We went to Ruston to see Noah's apartment and spend the day with he and Krystian. We are home now and relaxing and I think we will watch a movie. I wanted nothing more than to have a prayer service next Saturday but I just don"t have it in me to put it together, and that is alright. I have lived long enough to know that if something is in God's will that you won't have to force things to happen, He will open the doors and allow things to fall into place and that has not been the case here. So I will continue the road He has put before me and not question every step. I must continue with this thorn in my flesh for a time longer, knowing that He will use it for the glory of His name. I know that He can heal me in an instant but there is a reason for this season in my life and I will not be stiff necked and fight it. I will follow the path that has been laid before me and know that the truth will show all what God can and will do for not just me, but us all! The days I grow weary, I will remember this day and the strenght He gives me through the storm. I trust You, Lord, and know that Your best for me is much much greater than any best I could imagine for myself! I will follow You where ever You may lead because I know in my weakness that Your strength will prevail!

Day 234

 Today is Hope's first performance at a game. I am so proud if her and all she is doing. I am also so proud of Noah and I must say I miss him like crazy. You know I am proud of my sweet Elijah, this school year has him so excited. He has always been such a sponge for learning but with this new curriculum he is going to be so far ahead of the pack. His science alone is  Botany. Not many second graders learn about botany. 

Monday is my birthday. I will be 38 but the only thing I want is a prayer service next Saturday. I am so ready for God's healing but I can only hope it is His time. Welcome to the weekend everyone, I hope I have more interesting things to say later because I think my mind is still asleep. 

Day 230

Everything is coming together very slowly like the pieces of a 5000 piece puzzle without the box to see what the picture is supposed to be. But still I have to praise God that things are coming together. This part may sound strange to you but I have seen 4 separate visions of what is to come. I do hope and pray that September 14th is God's timing to heal me but if it is not then I must wait on Him. Psalms 27:14 says, "Wait on The Lord; be of good courage, and He shall strengthen your heart; wait, I say, on The Lord." Though I am weary and ready for a new adventure I trust that He will strengthen my heart even if my time for healing is not upon us. I would love for all who wish to come rather to pray, be healed, or just watch for a miracle to be there on September 14th. I also hope to launch my foundation that day. All are welcome but I am still working out the details so feel free to comment or message me about this event.