Friday, October 30, 2015

Life Goes On

     Thank you, all! I have heard from so many wonderful people offering their love, prayers, and support. I know that everyone has their own "stuff" going on and still they've stopped in their day to pray for us and offer their best wishes our way.  I love you all, so very much! 
     So yesterday was the big day. I woke up in a lot of pain, so it was a good day to see the Dr. My totally amazing husband was right there by my side, as he has been through this whole journey. The specialist came in and was all business. I guess when your specialty is ALS, there is no time for small talk. After his examination he determined that I am missing a couple key factors that positively identify ALS. He does not agree that I have ALS. !!!!!!!!!!! I could go on and on with exclamation points. This was such a victory for us. 
     My heart goes out to those families that have not heard the news that we did yesterday. There are mommies, daddies, wives, husbands, sons and daughters that are suffering with this disease. "Please, God, be with them. "
     My family and I are still dealing with the progression of my disease and what this future will look like. My heart and flesh will fail me, but my inner self is being renewed every day! God is making me strong in Him and I bless His Name for He has been good to me. Whatever this future will hold, I know that He holds me! 
     Now, onward and upward. We have a Chinese treasure's 6th birthday to celebrate today! Thank you, Lord, life goes on! 

     

Monday, October 26, 2015

ALS: Amyotrophic Lateral Sclerosis






ALS: Amyotrophic Lateral Sclerosis 


     Remember last year when everyone you knew did the ice-bucket challenge? It became the cool thing to do even if no one knew what "ALS" was.  I'll tell you what it is. It is a motor neuron disease that attacks your nerve cells and quickly kills your muscle function.  It is fatal with a life expectancy of 3-5 years.  And it is what my neurologist has diagnosed me with.  
     Pretty heavy stuff, huh? I'm seeing the top ALS specialist is Arizona this Thursday, the 29th.  I guess a lot will be answered in less than one week.  I can't help it, but my mind is running crazy with so much.  This can't be real.  This is someone else's life that I am reading about. Is this my story that God has been writing out all along?  
     Meagan and I have had long talks about a fall wedding. It would be so beautiful in the colors of Arkansas where her man waits "patiently" for her hand.  I have much work to do in preparing my eldest daughter to be a wife. There's so much to be planned for. My only son will be graduating high-school in 1 1/2 years. He still thinks he's taking our horse with him when he leaves to college.  I kneel in his room by his bed every Monday and pray over his life. I truly feel that God has big plans for Brendan and the enemy wants very badly to stop him. I must carry on in my prayers. My coffee-bean (Analise) is advancing quickly in gymnastics and has her sights set on the olympics (along with every other little girl in gym class).  I sit, three days a week, for two hours each day and cheer on her practice. I am her biggest fan. My Grace-Anna is learning braille. She has announced that she wants to be a teacher for the blind.  She goes into her room and sets up her stuffed animals and proceeds to teach them to use an abacus to count and goes over the "a" on her pretend Perkins brailler.  I dream of what her life will look like. I know it will be precious! Jaret and I will celebrate our 20th Anniversary next year. Boy, have we had a journey together! Our testimony is one of miracles and healing and joy and grace and just.....God's beauty. We have plans of sitting in our white, Cracker-Barrel purchased, rocking chairs and pouring wisdom into our grand-babies.  You see, I am needed and I have plans. 
     What happens when our plans and God's don't match up? What if all along my story has been written and it's almost to the final chapter? Can I accept this passage and still give God glory?
     I will try to not dwell on the possibilities until Thursday. I don't want to waste this week. Instead, I will let my love overflow, I will be a little more silly, I will wiggle and tickle my two littles, I will try my best at embarrassing my man-boy with momma hugs and kisses, I will surprise my daughter at college with a lunch date,  and I will make sure these things are tucked away in my memory forever.  

Tuesday, January 27, 2015

Sleep..........For the love of everything good.........Sleep!


Sleep..........For the love of everything good.........Sleep! 



     I'm exhausted!! I mean it.  I'm out of my mind, totally exhausted. The large dark circles under my eyes will attest to it. I wear a Misfit exercise and sleep monitor all the time now.  It keeps me accountable to moving my body enough through the day, but it also tracks my sleep patterns.  Let's see, yep, I got a whoppin' 1hr and 53 min. of restful sleep last night.  Three hours and 45 min. the night before, and Wow, four hours and 12 min. the night before that (that's the most restful sleep I've had in weeks).  I'm that kind of tired that S.T.R.O.N.G. coffee doesn't quite touch.  Anyone have any tooth picks to prop open my eyes? 
     I have the same sleep pattern every night.  I fall asleep as soon as my head hits the pillow;  a tornado couldn't wake me up during this time.  But that only last a very short time. Then my brain fires and tells me that there's an emergency. I wake up frantic and often my heart is racing. Then my whole body marathon starts. My legs kick like we're in the last leg of a race and I'm giving it my all. My body turns from side to side like I'm a rotisserie chicken.  My arms and shoulders feel like I'm putting my pinky finger into a light socket.  I lay there and contemplate every single situation in my life.  I plan my days, I pray for friends and family, I pray for REST and PEACE.  Then, in the final hours of the morning, I usually fall back to sleep for a tiny bit longer before my alarm tells me, I'm out of luck. 
     My dreams are very interesting, too. No need to go to a psychiatrist, my dreams are easy to interpret. There's the reoccurring dream of someone big and scary chasing my down the street. I run as fast as I can, screaming for help. My neighbors open their doors enough to peak out and I scream, "Help Me!". They close their doors tightly and I run on. I collapse into pure exhaustion trying to hide from this antagonizing figure.  I'm always running. A couple of nights ago, I guess I was feeling rather creative in the brain when I came up with this one. So, I was drafted into the military and being pushed along in this big, crowded line.  I stood before a huge man and he thrust a massive gun into my arms. I could barely hold it, and I had no idea how to use it. The line went on and next, a heavy bed roll was given to me. I couldn't carry it! It was just too heavy. I told the guy I couldn't manage the bed roll and the gun, and he said, "Then you will die."  (Pretty caring sentiments, I think.)  I was still walking along in line and then, Bam, we were out in battle!  Shots were being fired and everyone else was using their guns and fighting. I tried to figure out my gun and then began to ask for help to use it. No one heard me. No one even looked at me. I ran into a war-torn building and tried desperately to find a hiding corner.  I couldn't fight anymore, I just wanted to hide.   
     My friends and family reading this all know that I have put my faith and trust in Jesus Christ. So, one might say according to these dreams, you are trying to carry your own burdens and not releasing everything to Jesus. I would agree that this is what it looks like.  However, until you have walked (some days, limped) in my shoes, until your own body has decided to destroy itself, until every dream and plan you made for yourself and your husband has to be re-written, please do not pass judgement. Frankly, I'm too tired to hear it. 
     I put so many oils on me at night, you'd swear I'd slick right up and out of my bed! It's a good thing I don't have satin sheets or I might! I've tried every natural herb and tea. Yes, I pray powerfully and diligently for rest.  I don't know what else to do. I fight this MS (will from here on out be referred to as "The Monster") all day long, I'm too tired to fight it in my sleep.  
    So, I move on. I will start my day by asking God for His strength to attack this day. One. Day. At. A. Time.  Sometimes, one step at a time.  Life is hard, but God is good. He will give me what I need, including rest. 


(And NO, I'm not complaining. I'm SHARING.)  :) 
     

Tuesday, January 6, 2015

Good things are a commin'

Today I am going to wear my good jeans.  You know, the ones you save for special occasions. I'm going to cook dinner and we will eat out of the good dishes. The full spread all out on the table, I might even light the "saved for something special" candles.  I'm going to dry my hands on the "just for show" towels.  I'm going to spray myself head to toe in my designer fragrance and I won't let myself calculate just about how much each spritz costs.  Today is a good day to wear my beautiful jewelry. I want to sparkle and shine and....... SMILE!

Why do we save the best things for later? What exactly are we saving them for? I've been thinking a lot lately (that's trouble) about what's important. About life and living it. Really living it. Waking up and appreciating what this day will hold. I've always been a planner. A visionary, if you will. I look into the future and I plan what life will be like when......  But then something happened and it made me wake up. I opened my eyes to see my life is passing by so quickly. I Don't want to live in the memories of the past or live in the thoughts of the future.  No more, "I can't wait until.....".  I WANT TO LIVE FOR TODAY! What will this day hold? How can I make someone smile today? What can I do to make someone's day a little brighter, today?

I'm going to go outside and soak in this beautiful chillly-sunny (yes, you can have both in you live in Phoenix, AZ) day. This is the day the Lord has made. I'm going to rejoice and be glad in it!  I'm ready to pull out my new sneakers, the one's I've been holding on to for a long time because they are so pretty and new.  This is big for me. people! No more holding out! Today, I am all in!!! Whatch out world!