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