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