Day 351

Worry. We all do it even though we know better. Worry can't help a single thing but it can harm you in so many ways. It can make you emotionally off balance. It can make your good health bad or your bad health worse. It can make you spiritually blocked. It takes away peaceful sleep, precious moments that you can never get back. Worry is a whole lot like cancer and I believe in some cases it can cause cancer. Jesus tells us as His own not to worry in such a beautiful way in Matthew 6, not even to seek after the things we need because He knows our every need and if we truly seek Him first then all the things we need will come. It never says we will get all the things we want, but on that front, if the things you want, the deepest desires of your heart are intertwined with the desires He has for you than all you have to do is ask. He says we have not, because we ask not, or we ask halfheartedly. A life filled with worry is a life filled with turmoil and nobody wants that. But you sometimes have to ask yourself how to stop worrying, how to let things go. I think the first step to letting go of worry is to realize that you have absolutely no control over the things that worry you. I know that can scare you even more and increase your worry but not if you look at it from the right perspective. If we are not in control then who is? God is in control of everything. Trust Him and He will give you that peace that defies understanding. Trust Him and watch as the needs you were so worried about, the hole you dug so deep that you can't see the light of day are filled in the most obscure ways. Nothing is too big for God. Trust Him to meet your needs, and after all the decorations, sights, sounds, and smells of Christmas fade away keep the true meaning of it in your heart every day. Parents, watch your child grow and change daily and imagine what those first months, first years of Jesus' life might have been like. I can tell you I want to worry right now because there is so much to worry about. I hate being that way so I fight it. There are times when all i see is negativity, and that just causes a vicious cycle of negativity and suddenly you see the worst in everything and everyone. The wonderful thing is that there is a flip side to that coin and the same way you can find the negative you can find the good, positive, beacon of light in everything and everyone. My prayer for every day comes from Proverbs 31, "She opens her mouth with wisdom, and on her tongue is the law of kindness." I don't always succeed and it breaks my heart to know I have been ugly to anyone but especially my children. I never want to be a cause of pain for anyone in any way. I know that, bar none, is the hardest part about being ill, seeing the pain it causes others. Lord, bless everyone who reads this post, meet them where their needs are, fill them with true love, true joy, and true peace, bring the desires of their heart to the center of your will! Amen!

Day 349

I would like to start by apologizing for taking so long to write in here. I hope I haven't lost any followers because of it. I had an outpatient surgery that went very well, then there is everything that goes along with the holidays. After not doing much of anything for so long and recovering from surgery I went about the hustle and bustle of shopping, wrapping, and cooking. Luckily I had a whole bunch of good help, but I still did way more than I should have and every muscle in my body was hurting and it felt like my feet were going to fall off. That was not the worst of it, because of everything my symptoms were severely magnified. This is the first time I felt good enough to write. I was so happy to have all of my close family in and be able to attend my sweet Granny's 90th birthday party. To this day that lady is the epitome of grace and love. I strive to be more like her every day. She is such a Godly lady and I am so happy to have her as a role model along with the fact that I would never be here if it wasn't for her.  She would be the first to tell you that just because Christmas is over doesn't give us the right to stop giving and sharing, loving and caring, the way we seem to only do for the holidays. I covet her prayers as well as all of yours! I am so ready to be healed and know I will be in God's time; but for a time such as this I want nothing more than to be a help and comfort for those of you who are suffering, whether physically, emotionally, mentally, or spiritually. Right now I need to rest but I promise to do my best to write more often and hopefully with more meaning!

Day 333

I went to sleep last night fighting a severe migraine, extreme nausea and indigestion. I always have very vivid dreams but this  one was interesting and maybe just to me but I want to share it anyway. So I am deeply in this serious dream where Clint and I are building our dream home and it seems so real even his cousin showed up with BBQ and came to help but then all of the sudden I start goofin around with Clint following him around to different parts of the house and knockng him over and saying, "Well, Shute, why did you fall down?" In a silly country voice and then would say, "Well it's okay, because your good enough, smart enough, and gosh darnet people like you!" So then in our silly fashion Clint knocks me over and we are laughing so hard that I snort which makes us laugh even harder then I snorted even louder and actually woke myself up because I was either snoring or snorted for real and when I woke up I was still laughing. So I finally realize this was a dream and my migraine, nausea and indigestion is even worse so I couldn't go back to sleep and thought I would share a silly part of my mind that if it were not the middle of the night I might have never shared. I love how even when you don't feel good something so silly can make you laugh even if it is just inside your own head. On a more serious note I am having surgery at Glenwood in the morning. It should be an easy outpatient procedure so just pray all goes well. Thanks! Hope you are not up in the middle of the night. 

Day 330

It is a brand new day and it has been a wonderful one. Yesterday, not only was I able to cook a delicious birthday meal for my Noah, but I was able to eat and did not get sick! First day since I can remember. Another reason that was so great is because I have been without my IV nutrition for 3 weeks now, so I have been really hungry. The only reason I have been without is because the company that supplied my TPN and IV meds took that long to discover that they are not in network with my new insurance. Up to this point they have been amazing at getting everything I needed, but they really dropped the ball on this one. Luckily I had some extra IV fluids to keep me from dehydrating so hopefully when I go in for an outpatient surgery on Thursday they can find a vein to start an IV or hopefully use my central line. In the past they have had to stick me up to 12 times to get an IV going so I pray that won't be the case. Today I had energy I haven't had in such a long time. I was able to do some much needed housework, teach Elijah his full lesson, and feel good most of the day. Late this afternoon I started feeling my usual self. That is kind of sad to say, that my usual self is pretty much awful, but I am so thankful for the majority of the day I got to feel like a normal person and enjoy my sweet Elijah!

Day 329

19 years ago on this day I gave birth to my first child, Noah. I am so proud of all of my children. I suppose every parent is. Not everyone knows this, but Noah saved my life. I was going down a very dark road. I was so hurt by things I had allowed people do to me and some things I didn't allow but happened all the same. I felt so worthless, like the scum below the scum that bottom feeders wouldn't touch. I hated hypocrites and yet I became the biggest one of all. At that point I felt like I deserved to be mistreated. I didn't want to live but I knew I could not take my own life. So I lived a wreckless, painful life. I originally had such strong values and I just threw it out the window. Still I has some lows I thought I would never reach, that is until I did. I tried so hard to bury and numb my pain but instead I kept making it worse. Then I came to the night I should have died, the night I did die for a time. This story I have only shared with a select few until this point, but if it can keep someone from the pain I went through then I must share it. That night I had so much alcohol and drugs in my system I never should have woke up. I remember being in a beautiful garden. The colors were like none I had ever seen on earth. They were so alive and they even sang. Yes colors sang. There was a beautiful stone bench and at first I thought I was talking to an angel, it wasn't until later I realized it was Jesus in all of His glory and He didn't look a thing like any picture I had ever seen. I remember saying, "I want to see Ethan!" But Jesus told me, "Betsy, I can't let you see anything else. You have to go back. There is still so much you have to do." The next thing I remember is being slammed back into my body and I was stone sober. A few weeks later I found out I was pregnant. About a month later I saw an old friend at my brother's graduation and he had invited me to church several times and I told him I was going to church with him the next day. I went and saw a youth pastor I knew from before and he asked me if I had plans for the following week and I said no, then he invited me to youth camp. There I rededicated my life to God and my entire pregnancy I prayed that my child would not pay for my sins and that prayer was answered. I gave birth to a perfectly healthy, beautiful baby boy at 7:20am. My life was changed forever, that child saved my life and brought me back to God. I am so proud of the mighty man of God he has become! Throughout his life God showed me that he would not pay for my sins, through his character and his brilliance. And now that I am sick, he wants to save my life again. The work he is doing in college even as a freshman is to get to a point to find a cure for my incurable disease. God really does work all things together for good, even if we cannot see the good in it at the time, even if it is the most painful thing you have ever encountered. Have faith, this too shall pass!

Day 326

It has been such a rough couple of days. I have been waiting 3 weeks on my IV nutrition and meds and it took the this long to find out they were not covered by my insurance. I have spent the last few days sleeping or miserable. I want nothing more than to go to sleep right now but my pain is unbearable. I really hope this gets sorted out without me having to go back into the hospital. All I want to do is make Noah's birthday so special. And to stop hurting. 

Day 324

I was so sure I would be asleep by now. My pain has been unbearable all day. I would sleep for a while to hide from it but when it gets this bad it controls me not the other way around. I seem to be at a loss for words, when I started this entry I thought I had something to say but maybe I need you to say something to me. If you have any words for me please share. I can't wait until my new "great" insurance decides I can have my IV nutrition and meds back. I have gone 2 weeks without it waiting on their approval. What a collassal mess everything is right now. Can you help me? Can you please pray for me? I really need it right now. 

Day 321

I am sitting here after Thanksgiving listening to Christmas music while we put up our tree and soaking in all the smells and the memories this season brings. I know this time of year can also bring deep seated pain to light, things you try to forget most of the year are suddenly so very real. When you are sad, or angry, or lonely those feelings seem to be amplified. If that is where you are, know it won't last forever. I would like to share a bit from my book, something my mother wrote after Ethan died.

“The Stocking Left Hanging”

Christmas Eve – 1981 – The kids are in bed, finally sleeping.  Excitement kept them up long past their bedtime.  Steve and I prepare for their awakening and Santa’s arrival.  On the rocker we put Laura’s gifts and fill her stocking.  At Twelve years old there is more clothes and less toys.  Her special gift an electric blanket will keep her feet as warm as her heart.

Betsy, 6, has toys to be taken out of boxes and set up.  A doll house, doll furniture, a “pajama gown,” if I left it up to her she would wear it the rest of the year.  Also a Bible, she is reading now.

For Seth, 5, the toys have to be put together.  Transposing instructions into reality is not as easy as A to B.  No bike this year.  Not much candy in his stocking either.

We sit on the hearth letting the fire warm our backs and burn the scrap paper, boxes and those impossible instructions.  As we sit there our eyes stray to the woodbox gate and we see one stocking still there – Ethan’s.  We break.

This was the second Christmas without him and in many ways much harder to bear than last Christmas.  Was it that we has forgotten the pain or were we still in shock that first Christmas?  Maybe we just didn’t know how much we would miss him.

Steve and I were pleased with our family 2 girls and 2 boys.  On August 6, 1980 I let Laura, 10, and Ethan, 6, ride their bikes a quarter of a mile to the neighbors.  That ride Ethan never finished.  A car coming up behind them struck and killed him.

The pain in those words is so hard to describe.  How to explain the deep black hole where your heart usually is.  How to explain to Betsy that Ethan won’t be helping her get to her kindergarten class.  To Seth why he must sleep alone in his room.  To soothe Laura’s anxiety when the children are out of her sight.  For Steve and I, to learn how to live with a broken heart.  Parts of our lives were as empty as that stocking.

How we got through grief, depression, loneliness, the emptiness, feeling that one more breath was too much, and despair is a long, loving tale – God, who gave us Christ in that first Christmas, sustained our family.  He gave us the strength to survive – the peace and joy to learn how to live again.

This was not a one time gift, as candy in a stocking soon eaten and forgotten, but one that is there when the need for it arises  That need for God comes every day – some days every second, every breath.

As I read this, my heart breaks a little, but that gift has sustained me throughout my life. Whether my pain was inflicted by someone else, some mess I got myself into, or like now an illness I have no control over, that gift is what makes life so wonderful even in the midst of pain. I have no idea how people who know nothing about Who God really is handle the horrific things life inevitably throws at them. 

Growing up, every Christmas, before we could do anything we would all pile up in my parents bed and we would read the Christmas Story from the Bible. My mother's favorite was Luke. As we grew older and had families of our own we would read the story on Christmas Eve, I think this year we will start a new tradition. I want to read the story my mother wrote of a Christmas long ago when God alone sustained our family. She will be proud to know that her little story has officially been published even if it is just in my blog. I really hope it touches you and in some way can make a difference in your life. 

This Christmas I know will be very special, and I have a feeling that big changes are coming for my family. But for now I am going to soak in every moment, enjoy my family and our life...even if it is being stuck right here on this stupid couch. 

Day 314

These words are not my own, but they come from a beautiful soul!

Hey, you! Yes, you. Don't you know how much someone loves you? Loves you enough to die, and die so you could live. So live, and live fully. And for crying out loud, smile. There's a million reasons too. Our savior, our God, is amazing. Through our weekness, he is strong, and by his stripes we are healed. Trust, hope, have faith, and above all, love. Love, love, love, with everything you have! No matter the battle, were in the winning army. No matter what, no matter how shakey life is, God is steady, and the only one who is stand strong. The savior of the whole universe, and yet, he takes the time to know us each individually. Feel our hurts and our pains, and conquer them, along with sin, and death itself. So with death gone, what does that leave us with? LIFE! Be alive, be alive, I tell you, live, for this is what He gave to us! Freely, by grace, not by out works, He saves!!! He lives!!!! Now, we can be alive too! Is that not something to be excited about? Live, laugh, and love, to the fullest! For this is our purpose, our calling, and it's enough reason for me! I am alive, therefore, I will live, because He is God, and God almighty. For the glory of your name, Jesus, forever and ever, this is my prayer, my promise, thanks for all of yours, Amen. : ) 

Day 310

It is 2am and I lie here awake again. The past several days the couch has won outright in the battle for my time. I am sore from not doing anything but I have no energy and am so ill right now. I really hope this cycle passes soon. I feel like I am about to go crazy from the clutter surrounding me and the amount of time I spend doing absolutely nothing but hurting, feeling weak and nauseated. It would almost be okay if I could just sleep through it but sleep alludes me once again. I always thought that if you have something to complain about then do something about it, I never in mylife thought I would one day, and not even when I am old, be in a position where I can do nothing and that frustrates me more than anything. I really hope this passes soon because I fear I might lose my mind. My mom would tell me I never had anything to lose and though she would say it as a joke, I was always her ditz. I know I was never stupid but I recently found out that when I was in second grade I was tested for gifted but my father wouldn't let me do it. He had a bad experience in gifted, but I had a bad experience in regular classes. I was so bored I spent most of my days in my own little world. I didn't fit in with any of the kids and I always felt like I was on the outside looking in, like I didn't belong anywhere. As a parent my mom ridiculed me for homeschooling my kids and my grandmother even made the comment that at least they would only be a year behind and so many people were so concerned about their social involvement. When my kids did go back to school they were 3 years ahead and if you know my kids they are the most social creatures you will ever meet. Noah is one of 3 underclass men in any lab and the only freshman, and not just in any lab, but a brain lab. All you parents out there, you know your kids in ways nobody else can even fathom. Trust what you know and be whatever it is you know they need. Elijah recently mentioned the desire to have a little sister or brother and I explained to him that would never happen and reminded him that he always wanted to be the baby and he wouldn't have it any other way. His reply? A lot of good that did me, you are so sick these days I don't even get to be with you. Boy did that break my heart. I don't want to miss his entire childhood, sick and useless. I pray my healing comes soon, not just for me but for my family mostly. 

Day 305

I really wanted to begin to declutter today but that is not going to happen. We were able to get through school but more than my stomach problems, my legs are severely cramping. I know that generally means my potassium is low but there is nothing I can do about it until my nurse takes my blood. The good news is that I have a migraine coming on so that pain will help me not think about my legs. Clint would always tell the kids if they were hurt that he could take a hammer to another part if their body to help them forget about the pain and just saying that helped them forget their pain. Anyway, I really need to try to rest so I will be back soon!

Day 304

Today I wanted to share with you my daily time with God. I also want to share what I wrote today in my spiritual journal which is almost always too personal and intimate to share but this one was meant to share. I hope if you don't already have a plan in place that if you like it you can use my plan. I know any writers or publishers that are reading this would tell me not to share but to have it published to share with the world for profit and there is nothing wrong with that. In fact, I may one day have it published, but for today I want to share it with all of you who wish to use it to grow closer to God. There really is no set formula or plan to follow to build your relationship with God. It is all about a relationship and if you think of it like young love, you realize it is not something you have to force yourself to do, you just simply want to spend every moment you can with your love, in this case, God. So here are the things I put together.

Daily time with God

Include:

Memory verses

5 things I am thankful for

Prayer Journal

Spiritual Journal

Listening to God

Blog entry

Encouraging notes

Strength to not eat until I can

Teaching Elijah properly including Bible

Organize: Home, Finances, Life

God bless this!

Obviously you are not going to not eat or teach Elijah, those are more personal ones that serve as reminders for me. I get my memory verse from so many different sources, sometimes after praying I just open my Bible and there it is, sometimes it comes from a sermon, sometimes it is even a whole chapter. On the 5 things I am thankful for I try not to repeat one I have already written unless it is so good it needs repeating. I have to admit it is fun to look back on my prayer journal and see how God has answered my prayers! I will leave you today with my spiritual journal entry from today. I pray that you are blessed by this and God's will is done in your lives!

 Spiritual Journal

     This is just my second day and I can already see God’s mighty hand at work. I got today’s memory verse from Kerry Shook. He was talking about dreams and went on to tell about Joseph and the stages that happen before you dream comes to reality and it looks like we are in the final stage before our dream comes. I already knew that in my heart but it is amazing how when you stay in God’s word and make time for Him every day, not only do you have a much better more productive day but you also see signs everywhere you look that God really does have this plan for you and He is going to fulfill it! That is so evident in even the memory verse He showed me today. Ephesians 3:20 LB

     “Now glory be to God, who by His mighty power at work within us is able to do far more than we would ever dare to ask or even dream of—infinitely beyond our highest prayers, desires, thoughts, or hopes.”

     That is some amazing stuff right there! I prayed years ago that if this dream was my own and not His will that He would take the desire from my heart. Not only has it stayed, but it has grown, and thrived, and flourished! I seem to get more details constantly. I haven’t been given the detail on how or when because God knows I will just try to make it happen my way and right away. Soon I will be able to share my dream but I am not supposed to just yet. I can say it is something that I haven’t found offered anywhere, that doesn't mean it doesn't exist already, just that I can’t find it. 

Day 303

I seem to be recovering nicely from my surgery. I just have to remember not to over do it otherwise nobody here will be a happy camper. I am really struggling with negativity, trying to keep it off my lips and out of my life. I began a new daily devotion program today. It is a combination of several things I have learned over the years and I don't know why I ever stopped. I am so excited because every time I implement this nothing but good things happen. It is what has given me the strength to deal with everything I have been through up to this point. I started writing it out in a notebook but quickly transferred it to my computer so I will have much easier access to it. It is interesting to look back over old spiritual journals and see the things God has done through the years. I will share my devotion program in a later entry. Right now I think we are going to to sit down as a family and watch a show. I am still pretty wiped and sore from my line insertion yesterday.

Day 298

It has been a rough day to say the least. Between the pain and nausea bombardment, the blisters on my arm where my PICC line is, the migraine, and my restless leg I just want to go to sleep, just want it all to stop. I have to admit I get so overwhelmed sometimes. It's like my whole body is screaming at me for something I have done to upset it. I really hate for my family to see the days this thing breaks me, but sometimes it just does. It is days like this that I have to remember that this too shall pass. Monday I will have surgery to have my central line replaced and get this aweful PICC line out. I am nervous because they are just using local anistetic so remember me in your prayers. My baby girl just came in and told me she can't sleep so I need to go spend some precious time with her. 

Day 297

It is the middle of the night and I lie here awake, my heart in turmoil. Many years ago when Noah and Hope were small I would be awakened in the middle of the night with Clint's sister Kim and her two amazing children weighing so heavily on my heart so I would pray over them for hours. Kim was in a bad place and at the time she didn't have her children and I wanted nothing more than to take those babies in our home and give them a safe place to land but Kim was in such a bad place that I knew she would take it as something I was doing to her not for her, but my intentions were pure. I didn't want to keep them from their mother or father or any other family members, I just wanted to give them a place they could call home. Because I couldn't do that I prayed over them daily. Our home has always been open and a safe place to land for anyone who needed it and they knew the only two rules were leave your drama at the door and don't lie. Over the years many people have joined us in our tiny home. Both of my brothers, my mother, two of Clint's sisters, and his dad, plus Hope's best friend and many of Noah's friends. One Christmas my mom, my brother, Clint's dad and one of his sisters were all here with the 5 of us and it never seemed overcrowded. My sweet niece doesn't know me very well at all, but I know her and pretty much everything she is going through, I have been through and I really hope and pray that she will allow me to share my story with her because I love her like all my nieces and nephews unconditionally. I love my kids friends the same way and look at them as if they were my children too. I haven't been able to be the mom, or wife, or daughter, or sister, or friend I used to be; the one I should be; but I will get back there and hopefully sooner rather than later. I have dealt with some pretty intense pain in my life. Some due to loved ones taken far too early, some due to people who were in pain and just wanted to hurt someone, plenty self inflicted but the strongest pain, even stronger than the constant physical pain this wretched disease inflicts, is the pain I see in the faces of everyone who loves me and can't do anything to help me. When you have such an aweful disease that allows you to slowly starve to death, the pain is not in the illness, but in knowing my loved ones get to watch it happen. I have always prayed that God would shine through me and His joy would overflow onto everyone He brought into my life. I never wanted to be a cause of pain for anyone and yet here I am. I know soon God will use my story to touch many lives and aloe me to be an advocate for rare diseases so doctors will stop mistreating people simply because they cannot understand their illness and will work together to help patients find relief of symptoms and soon after a cure for all the small, misdiagnosed, and very rare conditions. I also know God is going to allow us to be a safe place to land for many more people in the most amazing ways. I am so ready to be healed, but thank God I am willing to wait for His perfect time and His perfect way. We are at our strongest for God when we are at our weakest in life, so God, here I am, use me!!!

Day 293

I am so glad to have Noah home for the weekend! Hope is at her color guard competition and I thought she would be there all day but thank God she is on her way home now and her band director said they did better than Tuesdays competition where they got a 1. 

I am starting to get used to this PICC line now that I have extensions and don't have to do everything one handed while trying to keep sterile. I go see the surgeon Tuesday and I think he will put in a more permenant line. I know my condition has random cycles but within those cycles are bigger cycles and normally between now and Januaury is my good time of year. It is generally the only time I can eat. This year however I am worse than I have ever been which leads me to wonder that when March which begins my hardest time of the year rolls around if it just going to get worse. I am not sure if my body can handle worse than now. I do still know that God is going to heal me but I am afraid I haven't hit the low I know is coming and I know that through that there will be no dispute that God alone has healed me. I suppose I am just going through the, " Take this cup.." stage. 

I have to run my meds so for now aufedersein, au revoir, so long, I bid you adieu, and I'll catch you in the rerun! 

Day 290

I have to say it has been a rough week. I can't even chew gum without throwing up. I am going to keep this short because my pain is not letting up and my nausea is inscesent. To top it all off I have a migraine coming on so this week is turning out to be a real winner. 

Day 287 Fear not and look back on this when you are tempted to!

This has been such a long and treacherous storm. I have let it beat me down, weaken my faith, fill me with fear, and worst of all remove me from the closeness with God I desire more than anything in this world. In so doing it has hurt our family, our faith, and our outreach. I have to apologize to God, to my family, and to all of you for allowing fear to rule in a time when I should be clinging so tightly to God. "Fear Not" is the command most used in God's word, I knew that but was reminded of it today. There is a huge reason for that. Life, everyday, is full of circumstances that can cause us to fear. When Noah was little and so afraid because he had insight into the spiritual world that most do not, God showed me 2nd Timothy 1:7, " For God has not given us a spirit of fear, but of power and of love and of a sound mind." That struck me as kind of funny because Noah's first name is Timothy. Through the years I shared it with my other children, and told them every time that fear overtook them to recall that verse. That verse along with the fact that fear is mentioned more than 500 times in the KJV Bible and "Fear not" or "Be not afraid" is written 103 times. God knows our first instinct is fear and that is why he reassures us so many times. Fear is a funny thing and 2nd Timothy 1:7 clearly tells us fear is not from God, so if it is not from God, then it must be from the devil himself. I always thought he used pride the most to trip us up, but while he uses that a whole lot, he uses fear to keep us from God's best for us. I have allowed fear to hinder my trust in God. I have known all along of His healing power and how He is going to use me in a mighty way through healing and bringing awareness to rare diseases that are treated like leprosy by the medical community. Very few doctors want anything to do with something they cannot understand or fix. From this moment on i am going to try my best not to let fear interfere with what God is doing through me, but I need your specific prayer to understand when fear is creeping in and to nip it in the bud. I am prepared for whatever comes next, and I want nothing more than for god to use me in a mighty way. I love the song. "Sometimes He calms the storm, and other times He calms his child." Right now He is calming His child and the storm rages on and I know he is going to use this in such a mighty way. You can look back on my posts and see the days I let fear rule me, and you can see the days all I could do was let you know I was alive and what was going on physically. This blog is so much more than that, if you read what it is about, it is all about my baby boy and his Faith that God will make his mommy all better and that is why when I tweet or put it on Facebook I try to use the #faithofachild, because that is what this is all about. I am counting down the days until God heals me and after that I will count the days after healing and share all the amazing miracles God is doing daily in our lives and the lives of those around us. It is funny, even though I just got out of the hospital and I know I am about to have another surgery, it is like the weight of the world is lifted off of me. Thank You God. I now understand when the devil couldn't make me fear my illness, he filled me with financial fear, fear for my children, for my husband, fear of the silliest things, anything to keep my faith from growing because now he is filled with fear and there is nothing he can do to me!  

Day 285

I came through surgery perfectly. I am now waiting on a temporary PICC line so I can get my nutrition and meds until my line can be replaced. I have been waiting for 2 hours for my nausea meds and I am starting to get very angry because I am getting so sick. I hope I don't have to stay in this hospital too long. I hate I am missing Hope's homecoming week, and I can't go see Noah this weekend. But it is what it is, and I am surrounded by so many Godly people! Thanks for all the prayers! They are still much needed!

Day 284

This is crazy. I was so relieved, thinking I was in the clear. My initial blood cultures were normal and though I fell like total crap I was so happy to know I could be home. Go see my baby girls performance tomorrow and Friday and be here to help her get ready for homecoming. Now I have been thrown for a loop. I got a call from a doctor telling me I need to go to the hospital tonight and when I told him I haven't had a fever since Sunday he said I could wait until in the morning. What this means is I have to get on IV antibiotics, have an emergency surgery to have my line removed, likely collapsing my vein. Then stay on IV antibiotics until my blood is clean and have another surgery to have another line placed. This time in my jugular. I thought for sure this was going to happen, then thought for sure it wouldn't. Now it is. Please keep me in your prayers. Also my sister in law Kim found lumps in her breast and she won't know for sure what it is until they do a biopsy November 4th so please pray for her. I know she is scared and she is trying to be so strong for me but she covets you prayers! Also her friend also named Kim went to the ER today with a possible ruptured appendix, so yes please more prayer. I just know God is about to do something really big because the enemy is trying to break us with full force so I know that means he is running scared and he should be! 

Day 282

The first analys of my blood culture was good so as long as the final result is good and the space in the repair of my line doesn't open any farther or leak or clot off my line I should be okay to use it. The surgeon said I want to use it for as king as I can because these lines do eventually clot off the veins and then it has to be moved and I have my jugular on my right side then they have to move to the left side which almost always causes problems. I am so thankful to have such a well versed surgeon right here in Monroe. Wish I could day the same about the hospitals. Thank you all for all of the prayers. From the blood results there is no reason my fever should have shot up Sunday night and they all think it is odd that it was 96.3 all day Monday, that is even low for me. Anyway I know your prayers kept me out of the hospital and surgery and I am so glad to be home!

Day 281

After running all over town I finally got my blood cultures done at Oncology at St Francis Downtown. The surgeon's nurse made me promise to go to the ER if my temp spiked again. Hopefully that won't happen and I can go to my appointment with the surgeon tomorrow at 11. Pray I make it until tomorrow. Night in the ER is not something I care to do. I will try my best to keep everyone up to date and please forward this to everyone for prayer! 

Day 280

I know I haven't written in a while and it is because I have been so sick. Right now I need you to send this to everyone you know. I need urgent prayer. When I went to the doctor Friday my line was fine. But today in the part that was repaired there is dried blood and possibly puss. My wonderful husband starts his new job this week and I am so proud for him. But because of that he cannot miss work. I have to call in the morning and see if we still have health insurance then I have to call the surgeon about what to do. Last time there was a hole in my line the ER sent me home and said there was nothing downtown could do either. So I had to sit at my house for a week with no medication or fluids and wait and see if I would get an infection. My line is 3 centimeters from my heart so an infection would mean definite ICU and very possible death. Please pray that I have no infection and if they can't do anything here that they will airlift me somewhere that can because I can't just wait around to die. I am in so much pain and I have so much to live for. Please send this all over the world and prove the awesome power of prayer. 

Day 275

Well, Hope's party turned out so great. I think everyone had a blast and the decorations were so beautiful thanks to Misty, Lexi, and Emma! I did way too much and am paying for it now but it was all worth it for my precious baby girl! I will put up pics very soon. I go to the doctor Friday and really hope I can get a handle on my symptoms. Clint is changing jobs next week and I know he will miss his family at the hospital but he can go eat lunch with them and see them whenever he wants. I really hope he loves his new job. At the very least he will have much more time at home with the family. I know his employer hates to see him go, but I am finally going to be able to get the medical care that I have been putting off for three years now. I thank God for that and I also thank God for bringing Clint's still current work family into our lives. They have been such a huge blessing for us and I know they have sent up many prayers for us. 

For as long as I can remember, I have wanted to be on a position to be able to help my family and friends. I lift them up in prayer, and my sweet sister's family really needs some extra prayer. I want nothing more than to be able to make everything all better and I truly believe God will give us that opportunity the same way I know He will heal me! I don't know when, but He has never let us down, and when I think I can't take anymore He gives me peace. When things finally do happen it turns out that His timing is always the best in the world! He has shown us that over and over again. He has put amazing people in our lives that I could never thank enough for all they have done for my family. God taught me a long time ago not to worry but He has also put people in our lives to remind us how true He is. I trust Him with every ounce of my being and I know the vision He has put into my heart will happen.  A very long time ago when neither Clint or I had a job and we lost our business we went from waking up with the weight of the world on our shoulders asking, "What are we going to do today?" To waking up with peace and joy in our hearts saying, "What is God going to do today!" I am back to the second question and loving every minute of it. My biggest prayer is that when God puts us in a different position then we will remember relying on God from day to day and keep that in the center of our lives. I have watched Him use me to touch so many lives, young and old, as long as I got out of the way and let God work through me and I want that now more than ever. I will continue to keep you informed on my medical condition, but I am going to try to do it with a cheerful spirit, with joy in my heart, and light in my life! Here is something kind of funny, when I worked at the bank I always had a smile from my heart and when someone asks how I was the answer was always, "wonderful". I can remember one person once asked me if I was in a cult because I was so full of joy. I want nothing more than to be that Betsy again, and no I was not in a cult, I just prayed everyday that I would grow closer and closer to God, so close that not even a speck of dust could come between Us or my family!

Day 267

I am so proud of my wonderful husband and I can't quit bragging on my amazing children. Hope's birthday is Wednesday and she deserves the world. She told me for the longest time she thought she made me sick because she cooked blt's and that was the first time she heard me get so sick. That breaks my heart because she has been such a rock through all of this and she takes so much on herself. She is going to be an amazing mother and wife along with whatever she concours in this life. She has had so much practice and it was great when we were making cookies and brownies and candy together. Even when she was my right hand at my pampered chef parties it was all fun and we both loved those times, but now she is gone most days until 6 between her practice and tutoring then at home she is pulled in so many directions that it is overwhelming. Not so overwhelming that she doesn't make straight A's, but more than she should ever have to deal with. Thank God I have an angel here who,though she is struggling with her own demons, gives her time to do things that no one else seems to get done. You know who you are and what a blessing! 

For some strange reason my meds are doing nothing more than keeping me out of the hospital right now. They barely keep my everyday pain and nausea at bay, but for the past month every bite of food or sip of drink I put in my mouth causes a violent reaction of pain, nausea, and other violent issues that no matter what I take or what I do, once I have put something in my mouth is completely unavoidable. You would think I would stop putting stuff in my mouth and I did today, but when I wanted to eat but didn't I bloated up like I was 8 month pregnant. I have no idea what is going on with my body. In 2011 when I thought all I needed was to let my stomach rest for a few days with IV nausea meds around the clock,better known as the ZAP method, my body took a left turn and IV nutrition began. They put me on a pain patch and for the first time in years I was pain free. Now it feels like my body is taking another hard left and it is throwing me for a curve. I don't even have a local gastroenterologist so I am at a total loss for what to do. Something's got to give, other than my body that is. Just being totally honest here, sorry if it is a drag. I feel like all I do is complain and I don't want to be that person. Jeez, I am even complaining about complaining, think I better quit while I am behind. 

Day 267

I can think of nothing but my sweet, beautiful, amazing sister. She had a really tough start. Despite everything she married a wonderful man who took her for who she is and loved her through a lot of tough times that could easily tear a marriage apart. Together they have raised 3 awesome boys and taken every one of her siblings into their home along with many other "stray" people. She planned and designed my entire wedding and instilled in me a love of entertaining and planning events. She lives such a passionate life and at times it seems she does so effortlessly. After we lost Ethan, Laura protected us from all she could. I have always admired her and envied her beauty so when Facebook had mistaken me for her it made me kinda proud. She works at an oncologist office and deals with illness and what it does to families every day but she loves her job and if she can brighten someone's day then hers has been made. Thank you Laura Long for being my big sister, I love you so much! Sorry if I might have embarrassed you but I just couldn't keep it in. 

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. 

Day 228

I still need to come up with a name for my foundation so I can register it with the IRS and I know it is going to be a lot of work but after going through everything I have, I can no longer stand by and let people be sent home to die because there are no protocols in place to address their specific need. I also know the power of God's healing hand and that is why we are having a service on September 14th. I know where I want it to happen but I have to get permission before I set anything up. This service is for any and all who need healing or want to be a part of a miracle in today's time because God says He is the same today and will be the same tomorrow as He has always been. My aunt gave me the idea when she was talking about when my dad was in ICU. In the waiting room we all gathered in a circle in prayer and everybody else cleared out of the room I assume because it made them uncomfortable. But after that prayer my dad went from no hope after coding on the heart cath table twice and his enzymes were that of a dead man to normal enzymes and all of the other tests  they ran 3 times because they couldn't explain it with science and said it had to be a miracle. For a heart surgeon to say it was a miracle was really something. They even ran the tests twice the next day and could do nothing but release him. I have known since I got sick that God was going to heal me but in His time. I will plan the service but I cannot know His timing. I also know other plans He has for me but it is not time to share that yet. I set up an event on Facebook and if you want to come join the event for the particulars or message or txt me. Are you ready to see Jehovah Rapha, My God who heals? I know I am! 

Day 227

I apologize for not writing for a bit. First no sleep but last night I went to bed early and slept to one this afternoon. That would be wonderful but I woke up with the migraine of all migraines. I went to bed but woke up nauseated so I am running my meds and hoping for the best. I just want to go back to bed but that is not going to happen anytime soon. A few days ago I got Elijah's school separated and set up to start school on Tuesday. I also know I really have to get started on Hope's birthday. I am having trouble concentrating  at the moment so until next time. Hopefully sooner rather than later!

Day 224 Still alive and kicking

Despite their best efforts the local emergency room was not effective in killing me. I am glad to have the use of my central line back. It is much easier to keep my nausea under control with the use of my meds. What happened to me last week really wants me to fight for people in my position because doctors cannot help what they do not understand. If no one is able to speak up about rare diseases that most physicians overlook not because they are bad physicians but simply because they do not know. Some have a God complex but I believe most are just doing the best they can to treat all of their patients and when they are told by a mentor that these odd or rare conditions are simply the new drug seekers then they adopt the view without asking the hard questions because most people I know with gastroparesis avoid the ER like the plague due to this. If their condition is deteriorated to the point that they must go to the ER it is because they have exhausted every avenue available to them and they have no choice. By the time they get to this point the medication needed is suspect to the physician who has not seen them throw up so much and so hard that they have pulled muscles and they are on the floor crying because they are doubled over in pain that they can not get rid of on their own. I know this because I have been there so many times. I have to get myself together to make my daughter's sweet sixteen more than she could dream. I also have to get my self together so I can start my foundation and turn the world on its ear and help everyone understand the truth about rare diseases and what patients go through.

Day 220 hanging in there with the#faithofachild

I am trying very hard to stay positive but circumstances are making it difficult. I hope and pray that I learn every lesson from this so I never have to be in this position again. The next two days will tell if my journey gets better or worse. It's funny how 7 years comes down to two days. If all goes well I will get to keep my line have no infection and start IVIG treatments at home, which will hopefully get me off all these other medications. It is already too late if I have an infection because it is in my heart but I can't think that way. God didn't send me back from the day I died at age 18 to take me away from the family He blessed me with that could go on without me and has for quite some time, at least the real me, but don't deserve to have the mommy they adore even in the state I am in and I so don't deserve them but they don't deserve one more hardship. My baby girl goes to school with the weight of the world on her shoulders and it makes her so mad that most of the kids worse problem is they broke a finger nail or they didn't get to go to the fancy restaurant they wanted. I wish to God that was the worst thing she had to deal with but she has had to step up and basically run this household and to sacrifice having nice things because my illness costs so much. The craziest thing about it is they don't mind. They are just happy to get the little moments they can have with me. Noah is leaving so soon and she has always had her big brother to lean on and she is scared to death of that void being there. When I went to Jackson for my "experimental" surgery I wrote letters to my husband and all of my kids because I didn't expect to survive it, but I did. In 2010 I was closer to death than I had been since I was 18 and I tried so hard to hide that from my kids but they knew. I was so frail. TPN has put 50lbs on me and I have been off of that for 6 months and though I can not hold down much of anything I cannot lose this blasted weight. I learned that I have muscle weakness due to malnutrition and that is why my body is holding on to it, my body is turning my muscle and bone into food. If anyone knows of an awesome paying computer job in a beautiful place to live with healthcare that at the very least makes sense please let me know because I am ready to get out of this black hole. 

Day 219 this is me angry

I am so very angry right now. I took my daughter to the after hours clinic because she sprained her thumb in Color Guard and I have a small hole in my central line. The doctor there said they couldn't do anything for my central line and she said I was trying to put her in Cardiac Arrest because I didn't go straight to the ER when I found it. So we left after hours and went to the ER and sat there for 3 hours supposedly they had 12 labs and radiology ordered and after 2 hours and the 4th time I was asked who prescribed me all the medication I was on and why they told me they were still looking at my labs but they never took labs and when the nurse finally came in there and blew my vessel they called her out and said that may not be necessary then they asked about my meds again and all went in a room and had a meeting about me treating me like a drug seeker when I told first I have a hole in my line and the night before that I tried to flush it and pulled out 3 decent sized air bubbles and I was having trouble controlling my nausea. But the only thing I needed was for them to fix my line so I did not get an infection or an air embolism and after another hour they copied a page out of the phone book and told me they couldn't and downtown couldn't repair my line. I should have told them to air lift me to a hospital that can handle central lines but at 10pm we finally get home Hope is exhausted and has to go to school tomorrow and I waisted the whole evening and most likely got flagged as a drug seeker. I really want to call a lawyer and shut them down because they sent me home with something that will either land me in ICU or dead. I wanted to get out of this area so bad and now I want to leave so much more. I am angry and I am sad and I am about to completely lose my mind.  

Day 218

It is late and I don't have much to say. I really hope my dear sweet husband had a good birthday. I know my brother had a great birthday. My dear friend Amy is getting test results tomorrow and I pray and believe by the power of the blood of Jesus Himself that she will have a report so good it could have only come from God! I have to take my medicine before it gets too late and doesn't do any good but I want nothing more than to never have to have another injection, patch, or pill in my life. Until then I must go because I cannot even see the words that I am typing because my pain and nausea is taking complete control. 

Day 217

This is the day that the Lord has made, 1 will rejoice and be glad in it. This journey has been one of the most difficult of my entire life. I remember many times in my past thinking that whatever I was going through at the time was the most difficult situation I would ever face. Boy was I wrong, and I really hope and pray that this is the most difficult, that I will come through the other end of my illness that has left my close knit, strong family in tatters. 
I have prayed so often that as I went through my day that I would brighten peoples lives, that I would be a blessing, that I  would put a smile on peoples faces and hearts, that God would shine so brightly through me and use me according to His will. If you are reading this, I pray that God will lift you up and fulfill the desires of your heart. I learned long ago He wants to give us just that, but we have to understand and be willing to follow His will for our lives. He has put so many desires and dreams in my life and I have spent countless hours praying that if the desires were my own and not His, that he would take them away from me. The more fervently I would pray this, the stronger those desires took root. I know He is with me, and if God is with me than who can stand against me? I often pray scripture in present tense instead of you, me; instead of Him, You. I know beyond a shadow of doubt that God is going to use my family to bring blessings to others. My entire family wants nothing more than to serve, bless, and obey. 
My nausea is at this moment consuming me and I have been trying to will it away so I can concentrate and use my words most carefully because I understand the power of the spoken word, as well as the written word. I don't want to take my medication, I just want to feel better. Recently all of my symptoms have intensified and no matter what I throw at the nausea,pain, migraines, bloating, muscle fatigue, and weakness; they just keep getting worse. My concentration is fading quickly and it is time to go take the medication I abhor.
Tomorrow is my sweet husband's birthday and all I want is to be fully present and for him to have the best birthday ever. It is my brother, Seth's birthday as well and I pray that this will be his best birthday yet. I know he is living a great new adventure in the place he has dreamed  of living for years. Earlier this month was my Nanny's birthday and she wants nothing more than to go home but that is not going to happen for her. She loved her home just off Lake DeGray near Hot Springs Arkansas. She loved tending to her garden, taking walks in nature, and just taking in and enjoying every day. She is with my aunt in Mobile, Al. and they say she is doing so much better. Recently they were here in town but I was too ill to make it over to see them and apparently they did not want to come see me because they drove very close to my home without taking the time to stop. This used to be my Nanny's house and I know we have made changes since we purchased the place from mom, but I know that is not the reason they never came by, they never come here because they have such horrible memories of this place. It has taken a long time but the darkness surrounding this house has been lifted and new life has been breathed into it. Still I don't blame them, I cannot wait to get out of this house myself. This month was also the 33rd anniversary of my brother, Ethan's death and I feel like it was finally one of healing instead of  morbid grief. In 4 days is my mother's birthday and I pray that she will let go of her guilt and bitterness so God can heal her too. She has Parkinson's, Diabetes, Sarcoidosis, Thyroid disease, and the list goes on. 
I have written all I can for now. I lift all of you up in prayer that God would heal your sicknesses, open your eyes to His will, and fulfill the desires of your heart!

Day 215

Once again it is 1 am and I am still awake. I can remember when I was pregnant I wouldn't sleep much at all. It was probably my body's way of preparing me for the months to come. I can remember baking a cake or cookies or brownies at 2am, whatever I was craving, whenever I was craving it. I remember many other nights of no sleep. I was so close to God then. I always prayed that not even a speck of dust would come between He and I, as well as my family. We made a point to center our marriage in God's will. That single resolve is what brought us through all the struggles in life that would have and should have easily ripped us apart. People always think the way we do things is very odd. Clint could have gone out of town and made more than enough money but the thought of us spending even 1 night apart was heart wrenching. We missed each other when either Clint or I was gone to work. Many nights that I spent sleepless either God had put someone on my heart and I fervently prayed for them until the Sun came up, other nights I would write, I did some of my best work when I was unable to sleep. I don't know if the lack of sleep drained my focus on everything else leaving me nothing to do but write or at times I just knew no matter how hard I tried I would never be able to rest until those words were our of my head and in the real world before I forgot them. I remember sometimes when I was so tired and I did not want to awaken anyone I would pray that God would not let the words leave me until I got them down. That makes me wonder what it must have been like to be chosen, hand picked by God to relay His very Word into what we call the Bible. I remember co-writing an Easter play that coincided with the Christmas play that had been written by others I knew. My favorite part felt truly like God was showing me exactly what happened. I wrote a prayer from Mary's heart after seeing her son beaten until he was unrecognizable and the short hours leading up to the Cross. That was some of the best work that flowed through me and somehow I lost the paper it was written on and after performing it I had a hard time recalling the words, but I wrote it again for one of my best friends in the world to perform it. The words were not exact but the truth was still there. Mary in so much pain having to watch what they were doing to her son, angry and even telling God He did not know what she was going through until it clicked, God not only knew but felt much deeper sorrow, knowing that His only Son went through all He did to save us all and also knowing that so many of us would reject Him, some blatantly and others in their ignorant bliss. In case you want to attack that last part ignorant is not stupid or evil, it is just not knowing the truth. I miss the times I was a children's minister and I would get the sermon notes and God would give me the most beautiful children's sermons. Many of the adults would tell me they got more out of my short teaching time than the rest of the service. Another funny thing is that when God is speaking to you, you may hear 3 different sermons on TV all relating to each other and to the sermon you hear at church and even down to the lessons you have in life groups. Turn the radio on and they are singing about the same thing. As humans we can all be a little dense or even stiff necked and sometimes when God is trying to tell us something it is given over and over and over again until we finally say Aha! and sometimes even think it was out idea all along. Every challenge we go through in life is to teach us and prepare us for the amazing things God has in store for us. So when you are facing a difficult challenge be sure you soak up every lesson you can from it so you don't have to apply, rinse, repeat, apply, rinse, repeat,...

Day 213

I am quickly growing weary of the constant pain and hunger. I spend most of my nights awake my mind is racing but I have no energy to get up and do anything. Just today I finally got some sleep after several days of very little but I slept until three this afternoon. By the time I was awake it was too late to call insurance, doctors, businesses, too late to accomplish much of anything. I have an amazing second grade curriculum for Elijah and it will be easy to implement as soon as I can find the time, energy, and will to get it set up. We plan to start after Labor Day but if all goes well we can start sooner. I know Elijah is so excited to get started. I still have to do back to school shopping and at this point it is going to be a nightmare going to the stores with all the other parents who either put it off until the last minute or waited until their children came home with a specific list. Either way I don't want to do it. I can probably get stuff online or go at 6 am but most stores do not open until 9 or 10. I already missed the first mandatory parents band meeting for Hope's Color Guard. I used to be the room mother, the first one there and would do whatever needed to be done. i used to be so much more than I am right now. That is the worst part for Clint, the kids, and me; if I were more lazy, if I never did so many things at one time, never cooked meals the whole neighborhood wanted to eat, never immersed myself in every aspect of my family's life; then this wouldn't be so bad. God gifted me wit so many different abilities and my body has thrown most of them away. But this is not the purpose of this blog, and I have to keep my eye on the ball.
So right now I am going to tell you some things I am immensely thankful for. My God is so good, if you have ever met Him, you know this. My family is so full of love and compassion, not just for each other, but for everyone. I am not stuck in a hospital bed, even though I may not always be able to sleep in my bed, I have been blessed with a very comfortable sofa at the center of my home so I can always be with my family. I am extremely thankful for a primary doctor who knew very little about my condition but made it a point to learn and do whatever it takes to help me. I am thankful for every breath I take, every moment with my family and sometimes even friends, prayers that if I close my eyes I can feel being poured over me like a warm blanket.
I will try not to use this as a soap box or a pity party because that is the last thing in the world I want. What I do want to accomplish is to; share the power of God's healing hand; uplift someone in need, maybe even at the end of their rope; nothing more and nothing less than God's will; if I can make a difference in just one persons life, that is what I want this blog to be for. I know people read this, but I get so very few comments and I really could use some feedback, good or bad, as long as it is in truth and love. I hope to hear from you soon!

Day 211

After yesterday I slept most of today and woke up in severe pain that refuses to go away no matter what I throw at it. I know my condition inside and out. I know and understand more about it than most physicians in this country. I now know what true starvation feels like. I also know when my cycle gets to a certain point that I want to do nothing more than eat and whatever I may eat just makes me want to eat something more. It is like having such a strong craving that cannot be filled by any morsel. I also learned years ago that when I feel that way it is because my body is in rejection mode. When I find myself wanting to eat everything in sight I know it is because I am digesting absolutely nothing. Everything I shove down my throat sits in my stomach and makes the next stage of my cycle so much worse, leading to pain I cannot control, impactions, migraines and the rest of my symptoms magnified. I also learned if I catch the starvation symptom and refuse to give in to it, to refuse to let a bite of food enter my mouth, then the next stage is so much more mild and goes away very quickly. Recently I have been unable to keep myself from eating, like I have lost all of my self control. I learned after my heart palpations started that no meal was worth my life and was able to dig my heels in and not eat there was even a long period of time when I could not eat anything. I have always been a huge foodie but I understood my condition enough to let it go for a time. Now even though every time I pull muscles throwing up, every time I get food stuck in my esophagus and it won't go up or down, every time I have heart palpitations at that moment I remember no food is worth my life I am having trouble remembering that when I want to eat. Even though I know "man shall not live by bread alone..." and Jesus tells us when you fast, not if you fast but when you fast. I feel so weak and helpless. Please pray that I will be able to let go of food for this time so I can live to enjoy it with my family when the time comes. Pray that I will stop torturing my my body because I can no longer stand to be curled up in a ball in pain. I know God will heal me in His time, I just really hope it is sooner rather than later.