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!