Day 197 part 2

I know how hard it gets when you get discouraged and weary. There are no words anyone can say and nothing anyone can do when things begin to seem hopeless. I have been at war with my body for so long at one point when throwing up caused my heart to start having issues I dug my heels in and decided no meal is worth my life but after so long of knowing true hunger I eat anyway and immediately regret it and wonder why I let myself torture my body but you can't beat yourself up. After losing my 6 yr old brother at age 4 I learned how true the verse that God will not allow you more than you can bear. I just wanted to share that because people don't like to talk about their weakness but to be weak is to be human and I hope it can give encouragement to know that no one is a rock and when you get angry at God it is ok to tell Him because He already knows and it will strengthen your relationship. I know I am writing a lot but I also wanted to share that when Hope was little she got pneumonia 6 times in a year and a half and at the time I was doing a study called Lord is it Warfare. During my study one day the devil himself told me if I quit the study that he will leave Hope alone. I knew right then how important that study was and told him he better leave her alone then and there. Sometimes it is God strengthening us, sometimes it is Satan testing us, but most of the time it is just life and as long as we know that though God doesn't cause everything He does work everything together for our good then we can cope much better. 

Day 197

I cannot wait until my days at the top of my post start over with 1 , the first day after my healing. Until then I have been brainstorming about how to set up my prayer session and first fundraiser. I cannot do it on my own and if I cannot get the help I need we will just have to have a prayer session. When people always tell me they are praying for me they tend to say that is the least they can do and I always respond that, no, it is the most they can do! 

Just a little vent, I still hold down very little food and what I do hold down I pay for in spades. My TPN put a lot of extra weight on me and because my body is all out of whack, I cannot lose a single ounce. When my stomach bloats people think I am pregnant and I don't know why I let that bother me so much. The fact that I am so fat and didn't even get to enjoy what caused the weight gain, or the fact that if I were to get pregnant in the condition I am in now it would likely kill me and most likely the baby. It is foreign territory for me to see the idea of a new life as a death sentence for me. Aside from the fact that I have a grown man as a son. 

Enough venting, but at the moment I am very tired and ill so until next time...

Lots of Love

And Laughter, 

Betsy

195

Since I could not get my insurance company to cover my visit to the Mayo Clinic after 6 months and a referral from the head Neurologist at Ochsner and after being told by my very own patient advocate within my insurance that I need to quit trying to chase a diagnosis, which is not at all what I was doing. I have a diagnosis and if she was in my shoes and understood my diagnosis she would know full well what I am so desperately chasing is a way to keep my body from shutting down any more organs because that is what my autoimmune autonomic dysfunction does. It has systematically shut down my appendix by the time I was 12, my gall bladder by the time I was 30, my stomach, and now my intestines. The next organs are necessary for life including my liver, pancreas, and my heart. I have no idea of a timeline or which organ will be attacked next but I am trying to do everything in my power to avoid a multi-visceral transplant or worse, loss of life. I was listening to the Joshua Kaddison song, "All He Wants is Mama's Arms" and it broke my heart because that is all my sweet Elijah wants. When I am not in so much pain we snuggle when we can but from the moment he was born that was all he ever wanted.  He peed all over the doctor and nurses and as soon as they put him in my arms he stopped crying. The last day I was in the hospital I fed him and decided the nurses in the nursery knew what they were doing and I sent him down so I could take a nap because once I got home I knew that wouldn't be an option. As soon as I put him in that little bed he started crying, but I let him go anyway. Within 10 minutes they called down to my room and told me he must still be hungry and when they brought him back, the minute he was in my arms he stopped crying. For the next 6 months, I didn't even turn the tv on. I would just hold him and look at him and to this day all he wants is mama's arms. I want nothing more than to be there for my children, to be the mom I was and that they all miss so much. According to them I was the best mom in the world and that was always the only opinion that mattered. I have been put down and ridiculed for my parenting style by my own mom and grandmother. When I homeschooled my older ones I was told, "Well, they will only be a year behind in school." When in fact, they were 3 years ahead when they went back to school. 

Getting back to the subject at hand since I know there is no one willing to help me get the care I need and I know there are so many senseless deaths because when someone is so ill they cannot fight for the care they need I want to start a foundation that advocates for patient rights to the care they need. I will set up a first fundraiser and prayer vigil for all of my friends, family, and all who want to attend to come and pray and see first hand the power of God's healing hand. He will be my Jehovah Rapha, the Lord who heals; and my Jehovah Jireh, the Lord who provides; my Adonai, Lord my Master; and most of all my Agape, love without condition. He can be all this and so much more to you. I miss being a children's minister. I miss all the church families I have had the honor to know through the years. I haven't been to church in a while because the last time I went, my pain hit me so hard that I could not stand and did not think I would be able to walk out of the building. We have our devotions, watch Church on TV, blast praise music often, and spend much time in prayer. Noah and Hope found a church in Bastrop that loves our family and has even raised more money for us than my home church. Noah is in the band and often leads and teaches. I miss my church family. The last time I volunteered, I could not be there all the time and that was the first time I had ever volunteered to do something and did not follow through. I have had to learn my limits and I rarely leave the house these days. I have to plan my daughters sweet 16 in October and if it is in God's will, I want to be healed by then. That is why I want to plan for my birthday to be the first fundraiser for my foundation and the Prayer session for my healing. I will need help because of my limitations, but I believe because of my limitations God can use me more than He ever has in my life, and He has used me greatly. 

Day 194

Even though I could not go to Mayo this week and I could not go to our class reunion, I really enjoyed being able to follow blow by blow on bonfyre! Everyone looks so great and a good time was had by all as usual, we always knew how to have a good time. If you are reading this and you read my reason for the blog then you know this came to life because my baby boy gave his birthday wish for my healing and he still asks me if I am healed yet and why not. I do know God will heal me, but in His time and when it will bring the most glory to His name. I am scarred, my body has been through so much and just when I think I can't take anymore I do. Gods word says He will not give us beyond what we can bear and so far in life I have found that to be true. I hope I can get some sleep tonight. I almost forget my body is in a constant state of pain sometimes because my fentanyl patch helps. A few days after the first day they put me on it, I was pain free for the first time in years. Several times I have tried to remove it thinking I must be better and realized, no, it is just doing its job. I will be so glad when I can get rid of my central line and all of my medications but until then I thank God that I have them to help me cope with this terrible debilitating disease. It is so rare I am having a very hard time finding someone who knows how to treat it. I tell medical professionals my diagnosis and some tell me I am just stringing words together but I have not put words I don't know together since I was young and imagined my world wide conglomerate Nowscow & Chilton. It is so rare, the rare disease fund has never heard of it. I guess that has always been me, one of a kind in every way. Teachers said I marched to the beat of my own drum and apparently   my body does too. Here is one more day of waiting. Thanks for taking this journey with me!

Day 192

Here is something funny. Two days ago I was very upset at how things were being handled by my insurance and I wrote a very angry post. For some reason my post was incomplete and not even published. God protects us even from ourselves sometimes. It is almost 3 am and I want nothing more than to go to sleep but I cannot so I thought I would write. We are not going to the Mayo Clinic because between February and now my insurance company could not seem to get enough information to pay. Even though I called sometimes several times a week, sometimes several times a month. Even though the head neurologist at Ochsner, New Orleans is the one who referred me because he did not specialize in my rare condition and he knew this doctor did. From day 1 I have had to fight to get the care I need while fighting for my life and I came very close to losing both. No one should have to go through what I live and I fear it will just keep getting worse because healthcare in America is just like everything else, all about money and self gain. I wish I knew what to do to change this. I wonder if there is anything anyone can do. If the right people read this and care enough to make it newsworthy it can make a difference. Are you willing to help me help those who don't know how to fight for the care they need before they lose their life? Murder and death and violence make the news all the time. Well, this is just a much crueler version of that because it is done in hospital rooms by doctors, insurance companies and politicians who want to line their pockets. I want to be a voice for those who do not have one but I can only do that if each and every one of you help. Share this blog with everyone you know. I think I heard once that you are 17 people away from anyone in this world, you just have to choose the right combination of people. Help me see if that is true and I will keep you informed on how you helped change the world. 

Lots of Love

And Laughter,

Betsy

Day 188

Eureka, I have come face to face with the devil himself. I smell a memory I cannot erase. One hidden so deep within myself that I blocked to protect myself and to live. I must forgive the dead and living alike for this. I cannot bring myself to speak it aloud but I can no longer forget. I know I am speaking in riddles but this is not for you, it is for my healing. I ask how can the one who knew and selfishly allowed it live with themselves, but they are not truly living and though I forgive it will indeed be much more difficult to accept forgiveness on their end. I want to ask why I was not kept from this evil but that will never change a thing. My anger burns so deeply. Filled with outrage and disgust I have to remember we are all human, we all sin and fall short of the glory of God. Knowing that Christ went to the Cross freely to pay for the sins He knew I would commit leaves me with no right to do anything but forgive. I learned this lesson years ago and I learned that I had no right to hold unforgiveness for myself. Allowing yourself to forgive you is the hardest lesson to learn, but could very well be the most important. Even knowing all I do, I would not change one moment of my life because it made me the person I am today. I know God will heal my physical body very soon because at this moment He is healing my soul. Through me God has created a mighty warrior for Himself in my eldest son. Given the name Timothy Noah, he exudes the eagerness of Timothy to learn, the heart of Noah in whom God chose to continue mankind, the spirit of David, a man after God's own heart, the perseverance of Paul and the love of Christ himself. 

   I see in my daughter, given the name Kristen Hope, no one can extinguish the warrior spirit within her likened to that of Deborah the Judge, she has the loyalty of Ruth, the kindheartedness of Rebecca,the grace of Esther, and most importantly, the faith of Mary!

  I already see in my youngest, given the name Elijah Nathaniel, the knowledge of an old soul likened to the first Elijah and a prophet, the wisdom of Nathanael to follow Christ, and I am sure there is much more to come from him. 

  As God restores my body, I will be nothing less than the woman He created me to be. The wife, mother, sister, daughter, friend, and so much more; everything He planned for me to be and do will come to the light and that is a journey I have waited all my life to fulfill. Watch out because here I come world, ready or not!

Day 181

After a very long evening in the ER we are home. According to my blood test the infection was not systemic, just localized at my line. So they gave me Vancomycin and sent me home with other antibiotics. I asked if they felt the line should be removed and they said no but I should follow up with my doctor in 1 to 2 days. The nurse said it looked like staph but we have to wait on the cultures. So my procedure is off for Tuesday. I have a feeling God doesn't want me to have it done. I am tired and need to take my meds but am home safe and will see my nurse tomorrow. Thank you so much for all the prayers. I was talking to the nurse about what I go through almost every day very nonchalantly because I have dealt with it for so long and she just looked at me and said that's so sad. I don't want to bring sadness to anyone anymore. My whole life all I have wanted is for God to use me to bring joy to people daily. I am so ready to be there again just like Jabez I don't want to cause pain.  

Day 180

I once again missed being with my family as they celebrated my mother in laws birthday party. I am so glad they were able to go and have such a good time. I am just so ready for something, anything. I won't know until Monday if I can have my procedure Tuesday. We really need to go get Hopes permit but where is the time? I guess I am still in a bad mood because I haven't been able to get my pain under control and sometimes it may be best for me not to write because my motto is to celebrate life, every moment, because every moment is a gift of God!

Day 179

Today was filled with pain and I wanted nothing more than to be with my family and watch my baby boy preform at VBS and watch Hope in the position I used get so much joy from teaching the music and moves. I still haven't heard anything from my insurance company. I want all of this to be over. I am so tired of being sick and I have had to fight so long for healthcare, a fight I should have never faced. If I had been just a little more ill I would have never, I can't even think what may have happened. Today I totally broke down. It is not easy having people see me and say how well I look knowing how bad I feel. I am sorry I can not always be positive even as hard as I try. 

Day 178

I have barely moved today. Slept most of it away and realize my pain is out of control. I knew when I was so hungry yesterday that was a sign that I was going into a bad cycle. I knew better than to give in to the hunger because nothing satisfies it but I ate anyway and after last night I am really paying for it. I have had this for so long I could be an expert in it. But I know when I feel that hunger that the worst thing I can do is eat, but how do you just not eat. When I was a teenager I would forget to eat but I could still eat a whole large pizza and not gain an ounce. I spent my teens as a size zero and it wasn't because of an eating disorder. I was like a human garbage disposal and I was very active as a dancer on the dance team and I loved to dance just for fun. About 3 months ago I was folding clothes with my Hopie and We were talking about footloose old vs new and I put the old song on and I just had to get up and move. I was singing and dancing my heart out and I looked up at Hope and she had this strange smile on her face like she was so happy to see up and moving and having fun but in the back of her eyes I saw the pain you could tell everything slammed down on her all at once. I want to dance and sing with my kids every day. I really miss that. Anyway, bad cycle, pain and everything else but I have to take care of insurance stuff before my procedure Tuesday. I am glad I talked to the insurance lady because she told me she saw where that came through but that they have gotten nothing for Mayo. As much time as I spent making sure the doctor who referred me had sent the insurance exactly the wording they needed to use and they haven't sent anything to the insurance. That really burst my bubble because without insurance coverage everything I have been waiting, hoping, and preparing for will be for nothing. I still don't know how we are going to afford to fly to Jacksonville or a place to stay when we get there. I do know for a weeks stay a condo or timeshare will be much cheaper than a hotel and normally by now I would have spent many hours researching the best deal closest to Mayo and pouring over it until I was sure it was the right place but I haven't done anything and now I find out that my doctors haven't done anything either. Two weeks away and this is so frustrating but I have to trust God has it under control. Since they first started me on TPN I have gained 50 pounds. I have been off TPN for 2 or 3 months and I cannot get this weight off of me. I know my body is in starvation mode and I guess I wouldn't mind as much if I had eaten and enjoyed what put all this weight on me but it is so frustrating. I could be doing absolutely nothing wrong and suddenly within 5 minutes my belly swells up like I am 7 or 8 months pregnant and I just hate people thinking I am pregnant when the fact that if I were to be I would destroy both my body and still malnourish the child, not to mention all the meds I am on and the harm that could do. I know I am just venting and I am worried. I know God is in control and as long as I seek Him first all these things will be given to me. I trust You God, with all that is in me I trust You! It is time for me to stop asking what am I going to do, defeatedly, and with great expectation, ask ok God, now what are you going to do. When we submit to God, that is when we see true miracles! I will let you know every miracle and how God's amazing grace lives on! 

Day 177

It is hard to believe I have waited for so very long and now it seems everything is coming together, almost too fast. I don't want to miss one single lesson from God because I am ready to be past this point in my life. I will be having surgery on Tuesday the 16th at P&S. I should go home that day. Hopefully it will help with my anemia. I guess we will fly out on the 26th to go to Mayo. I really hope and pray this Neurologist Specialist in my Dysautonomia  or autonomic neuropathy will have the answers we have been seeking and have a treatment that will help me get off this couch and start living my life. The life God created me to lead. I can't thank you all, especially you, enough for everything, the prayers and support of our community and through this a global community to get us where we need to be so we can in turn use all we have learned to farther God's will and His kingdom!

Day 175

I am still here and I still have no answer for the reason for my anemia. I have an appointment with one doctor Wednesday and I have no idea when I am supposed to g back to other doctors. That is one reason I am so glad I am going to the Mayo Clinic, the doctors all talk to each other and talk to you about what is going on and what they intend to do about it. Whenever we have had a big trip like this before I would have spent hours researching travel plans and a place to stay but I have only looked at airline tickets once and they are really high. I have medical flight set up but that only includes me and possibly one person and we cannot leave our youngest home. I was really hopeful that my whole family could fly and have a decent vacation at the beach while I am at the doctor because we have never been able to take a family vacation anything close to that. Don't get me wrong we have gone camping and gone out of town to visit family, but especially since I have been ill we just haven't been able to afford it. We all enjoy just spending time together and have a blast doing nothing, thank God my family is so close knit. I haven't been able to work in years because I never know what my day will bring, so I have done the best I can to give my wonderful husband and sweet children the life they so richly deserve.
I really am hopeful that I will finally get the answers I have been looking for over so many years. I am also hopeful that I will get the treatment I need to, in a way, give me back my life. It has been such an uphill battle and I am growing weary, but I will never give up, as long as I have breath in me I will fight whatever obstacle is placed in front of me. It is getting down to the wire and if you want to help, I still have my Papal donation account open.
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=ZKCN5VYNSVJPE
I am so thankful for everyone's support and prayers and I know God will bless you. I want you to know that I will by every means pay it forward when we are in the position.

Day 171

Today is such a special day for my family. It means more to my family than to most because none of our family would be here if it weren't for this day. My grandfather Gerald R. York, we called him Jerry, served our country at the end of WWII and in the Korean War. He married His 7th Grade Sweetheart Carolyn, My Granny, on this day 71 years ago. He passed away in 2011 and is loved and missed by so many. My family is celebrating, some of them I haven't seen in years. I did everything right this morning to get prepared for today's events, but it wasn't enough. my sever pain and other symptoms kept me home alone, Don't get me wrong I am so happy Clint and the kids could go, I just hate that I missed out. I know my family knows how much I love them and I know how much they love me.
I am grateful that I am now able to type on an amazing laptop, the keys fit my fingers just right though I do miss the auto-correct on my phone, I suppose I will just have to pay attention to what I am typing.
I painstakingly await July 29th, trying not to put too much stock into what they can or cannot do for me there. Still, I remain hopeful that a full recovery is within sight. I hope if my family is reading this, you will know how desperately I wanted to be there today, but I have learned when my body says no, I have to listen, at least until I am healed. After sleeping most of the day my family has just arrived home and I want to hear all about it! See you soon!
Betsy