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?

Day 460

As most of you know I had a 5 hour iron infusion Thursday. Friday I felt alive for the first time in such a long time. I admit I did way too much and our family had an amazing Easter weekend! Not only did we have all our babies, yes even the 19 year old baby, home; but we got to visit so much of our family and I was lucid and well enough to enjoy it. I am feeling pretty wiped out now but it was worth every second soaking up my family! 

I know how easy it is to get negative when you have dealt with so much for so long and I know I have been very down and negative lately. Thank you so much for your prayers not only that I would feel better but that I would stop being negative and enjoy every moment for what it is. My sweet aunt Ann told me I need to get outside and soak up some vitamin D and I made a joke saying I was so fair skinned that I was afraid I would blind people and her graceful response to that was that my fair skin is a sign of roality. She is right about that because I am royal, child of the King of kings and Lord of lords, a child of the most high God! I don't pretend to understand His plan for our lives or how or when He will heal me but I know He has a plan for a future and a hope and He will heal me in His time. Until then I want nothing more than for our family to be at the center of God's will and to give them everything possible in my condition. Time for me to open my mouth with wisdom and on my tongue to be the law of kindness. Those words are much easier said than done especially when you are very ill but I will do the best I can with every day that I have and appreciate you prayer helping to keep me from going negative. I pray for everyone who reads this, whether you are ill, sad, or whatever you need may be, I pray that God will meet you where your needs are. 

Day 448

At the moment I am clear headed, in no pain, feel no nausea. It feels strange to feel normal. I want to comment on a post I tweeted and sent to FB on why I felt that way. It breaks my heart to know who I used to be, who I should be, who this illness has taken from me and my family. A moment of clarity forces me to mourn the life I haven't lived in so long. Will this last a few hours? A few days? Longer? Or will I go right back where I was into the fog of my illness? Could this be the mirical healing I have been anticipating for so long? I know I will be healed. As I am writing this my pain intensifies. I suppose 4 days of sleep gives a bit of clarity but that clarity tears me up inside. I just really miss me, the real me, I want me back so bad. 

Day 441

Sorry I haven't been keeping up. I have been having a rough go at it lately and I am having a hard time trying to come up with something positive to say. I just wanted to let you know I am still here and I truly appreciate your support, prayers, and the time you take to read this. 

The thing is I don't want this to be a sob story, never have. Not a poor me or whatever. This is a journey to the day when by God's will alone I will be healed, but who wants to hear how I can't keep my pain and nausea under control, how I throw up every single day, sometimes up to 8 times a day. Who wants to hear how I am too weak to get up and walk to the bathroom without holding onto the wall, to weak to get up and clean a mess that is driving me insane. 

I'm just so weary. Sinking into a deep dark hole that I can't do anything about. I used to be so vibrant, done so many jobs, cleaned rather I was singing or fussing, put together elaborate parties, had so much fun with my family. I miss me so much. I want to live, really live, not just be. 

So, I think you get the drift. I don't post because I just can't find my sweet sweet spirit that has changed so many peoples lives. People would ask how I was and the response was always with a huge smile, wonderful. Now I dread that question because I just want to scream and cry and say, you really don't want know. Instead I just say ok or not so good. Right now my pain is so strong that it is blurring my vision so I guess I need to stop typing before it turns to jibberish, not that what I am saying is much better. 

Anyway, if I miss some days now you know why. I hope you will stick with me through this journey and I find the poetic voice God blessed me with.