Day 488

I feel very blessed today. After my visit to the pain clinic they set up an appointment to do target point injections and I am really hopeful that will help get my pain under control. I go to the GI doctor Tuesday and I really hope we can come up with a plan to get my nausea under control. Since my main doc is no longer seeing patients I have to find someone to take care of my migraines.  I am also very hopeful that I am going to be able to launch a spotlight for those with rare diseases and create a website with my computer genius hubby's help to open a non-profit and eventually reach the world stage to help researchers, doctors, and patients to work in conjunction with one another in a way that is much more simple. Hopefully to cut through the red tape and years of doctors saying either I can't find anything wrong with you or there is nothing more I can do for you.
On another note I am so excited the kids are getting out of school! I feel my life is full when my house is full with all of my babies, and I can't wait for our visit from Misty!!! I really hope this summer we will get an opportunity to visit all of my brothers and sister and family!
I go to the neurologist in July and really hope he can get to the bottom of my underlying autonomic dysfunction. I am so ready to stop just being and get to truly living. Then I feel like I can really help others with rare diseases. Everything I set my mind to before I got sick, whether creating my own line of cookies, perfecting my Christmas candy, teaching pre-k 3, homeschooling, being a personal banker, whatever the task I always pushed myself to be better than the best. I know all of that was by the grace of God alone and I also know that by the grace of God I will be able to fulfill His will in changing the way the world looks at sick people that don't look sick. I know I still have a long journey ahead of me and I pray I will glean ever lesson, every pain, everything I need to teuly make a difference in this world.

Day 484

I haven.t written in a while because I have been so weak. These past few weeks my illness has gone from bad to worse. I can't even hold down a few sips of water and my insides feel like they are about to burst. But I don't want to write about all that right now. I used to write poetry all the time and would like to write a poem about after I am healed.

The Scar

Our bodies serve as a road map to our life

Every stretch mark, every wrinkle, every scar

They tell of all our happiness and strife

A line drawn from my sternum to my naval

Twice opened for a promise and a loss

Years of pain and sorrow compound

And this line is left as a label

A memory of the days I didn't live

I could only find a way to be

I bear it to show all I have to give

To remind me not to waste another day

For a promise of the next is never there

So I consume every second in every way

I can only hope this scar will lead to that

For now I am in the days I do not live

But when I am healed 

This scar I will use as a fact

God's promises are true

I will not waste away 

I will shine in the body He made new

Day 467 @NBCTheVoice #faithofachild

If anyone finds their way to this blog via The Voice, thanks @blakeshelton for giving me an avenue to have a voice for those who do not have one for themselves. From my personal experience of going to doctors for 10 years who all say they don't know what's wrong with me, then another 6 years after with a diagnosis and all the way to the top, "There's nothing I can do for you." My heart goes out to those on a similar journey and feel so lost and voiceless. I know some people have eating disorders but I can't even begin to fathom the number of young girls and boys who don't understand why they can't hold down food and trust a doctor that makes them believe it is an eating disorder. There are so many rare diseases that doctors don't have the tools to diagnose or refuse to be bothered with. I know there are many good doctors in this world who truly want to help their patients but cannot. I want to be that voice, to connect researchers with doctors and patients to come to a common goal. I am only one voice, but isn't that how every truly great things come to pass, with one small voice and one giant heart!

Day 461

I have been awake most of the night so I decided I would catch up on some Bible reading and praying the Scriptures. The final one I went to was Proverbs 31. Long ago I memorized Proverbers 31:10-31 and have strived to be the wife of noble character. This time I started with verse 1 and I remembered something I was told long ago. Since the chapter is 31 and it has 31 verses then it has a specific verse for everyone's birthday and when I got to verse 8 even though I had read it so many times before, it blew my mind. Open your mouth for the speechless, In the cause of all who are appointed to die. (Proverbs 31:8 NKJV). I have long said I want to be a voice for those who have none, who have a rare disease that doctors either don't understand or care to help. I have heard more times than I can count, "There's nothing I can do for you." I have also heard that I must be lying or that I was just a drug seeker when I abhor drugs but endure the ones I must to give me some semblance of a life. So whether the Proverbs 31 verse of your birthday means anything to you, mine means the world to me and it took me until now to even begin to understand it. God is so creative, if you don't believe me look at this majestic world, look at a zebra, look in the mirror! It's so funny how He can use His very word to show you the why to it all. I get it, do you?