Day 569

My nausea has gotten the best of me today, but I will not let it win. Instead I want to tell you a fun little neuance. My new website www.honopeah.com that I hope to extend to be a place for researchers, doctors, and patients to work together to diagnose and cure rare diseases. Okay so here's the funny part, when my daughter was in prek she wrote honopeah in sharpie on our hall book shelf. I had no idea what that word could possibly mean and when I found out I thought it was the sweetest thing in the world she loved her big brother so much that she combined their names, Hope and Noah the first 2 of hers then his and the second 2 of hers and his thus honopeah was born. I thought of all the websites out there that are so big and catchy so you don't forget them but most of them have no hidden meaning and now you know mine. 

Day 564 starving

I have a question for all of those with gastroparesis, Do you feel hungry even though you know if you eat you have to pay ten fold?  When I was a teenager I was tiny, I was a dancer and I would often forget to eat but I was never hungry. When I had children I had to set a specific schedule to eat so I didn't forget to feed my children. After that I ate because it was time or something smelled good or I had a craving but I never felt hunger. I now know true hunger. I had been literally starving to death before I got on IV nutrition. I didn't like the weight my IV nutrition added but the doctor said it was a good thing because that means it is working along with proof from my blood work. How do I get rid of this insatiable hunger? Two sips of water and I am barfing my guts out. Sometimes I don't eat for days and I still throw up. Right now I want a big fat juicy burger, some decadent deserts, and icecream. Sometimes my hunger is stronger than my nausea and pain combined. Anybody have any suggestions?

Day 563 waiting

"Wait for The Lord, be strong and take heart and wait I say for The Lord" Psalms 27:14. As I say that I have been given news that I am going to have to be more patient than ever. I was going to write immediately after that about how I know God will heal me in His time. I know as long as we Seek Him first he will provide for our needs. It is difficult for me to just let that go because I am a fixer and I want to make everything right and it seems the more I try to do to fix our problems the worse they get and the moment I hand them back to God, He fixes my mess. I know He is my Jehovah Rapha, my God who heals. I know he is my Jehovah Jiro, my God who provides. I know he is Agape, love without conditions or expectations. Knowing all of this I am still weary from waiting, but wait is His answer to me right now, so I wait expectantly knowing He will meet our needs in His perfect time. 

Our home is small but has always been and will always be a safe haven for those who need it. We believe in a drama free zone with no yelling or ugliness. We expect nothing from those we give a place to stay, or food to take, or meet whatever their need may be. Our mission is going to grow much larger in time. I have a vision of a place large enough to be rest for the weary, food for the hungry, and hope for the hopeless. God only knows how we are going to get to that point, He only knows the timing. Until then we will wait. My illness has kept me from taking care of my family and my home in any way. I was the fun mom that all the kids loved to come and play. I cleaned diligently singing songs of praise. I prepared food and included my children in baking cookies, making candy, and even cooking meals with me making it fun. I was the wife, mother, and overall woman God created me to be. At this point I feel like a bump on a log. Sometimes I can't even get up to walk to the bathroom without blacking out. All I want is to be the person God created me to be.

I started this blog with one goal, as the name says I am counting down the days it will take for God to heal me. I know I don't deserve His healing or provision, but through His grace He gives these freely. I pray that everyone who reads this blog, whether you are sick or know someone who is sick, whatever the reason for reading, know I pray diligently for you.

If you believe in my cause and want to help there is a PayPal donate button. I am not sure if my mailing address is on here but it is on my new site www.honopeah.com. I built that site to bring researchers, doctors, and patients together to understand rare diseases and find cures. I know I need to revise it in order to make that happen, but with God's help I know the world will be changed through this.