Full Disclosure – This Is Me – The MS Battle

This isn’t a typical post for me. I don’t generally post on the battles of MS. Most of my posts are centered around recipes. Healthy, yummy recipes, to help you get away from the S.A.D. (standard American diet) and onto the road of God created eating and joyful health. However, I feel that I have drifted far away from the point. I have lost the origin of this site to the food. It has slowly taken over, and for that, I apologize.

The more I read and the more blogs that I follow, the more I am reminded that this is a personal struggle. This isn’t about the food…well, the food isn’t the center. It’s not why I started to cook this way, and it is not why I continue to study. It is about health…and not just about the health that I want everyone else to experience, but the health that I’m battling for. As selfish as that sounds, it’s truth. It’s about the disease that I fight on a daily basis. It’s about the struggles that I face and how desperately I want to overcome them so that I  never have to watch another person repeat them. I want so badly to be able to shout from the mountaintops, “THIS IS A WINNABLE BATTLE”!! And when people ask, I want to be able to tell them HOW.

Why is it important to me to do this?? Because from where I stand, it’s a lonely mountain. There have been many people that have blogged about how they have overcome MS. How they changed a few things and now they are wonderful. However, there is one thing that I have yet to find…and that is someone who has been down to NOTHING and came back. I mean nothing. This isn’t a glorified exaggeration here, this is the bare bones reality of it.

I have not shared much about my struggles, just the basic, “I was paralyzed a couple times, now I’m not….yada yada”…But for the most part, the details, the reality, I have kept highly guarded. I have recently been questioning myself…why?? Why would I not tell the whole of it? What if there are others like me, that LIKE ME, need a glimmer of hope from somewhere? What if they need to know that despite all of the crap, it’s worth fighting for, that there is an end in sight?.

 

So here it is…this is me.

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I’m really good at faking handicap with all of my “standing” pictures 😉 , but this is the reality of it. I spend 98% of my time on my toosh. That power chair is the machine that allows me to busy myself in the kitchen preparing all of these recipes. Every picture I take is taken from that seated position. I do all of the cooking sideways at my stove and every bit of prep-work seated at the kitchen table.

I have a caregiver that helps me 5 days a week when my husband is at work because I require 24 hour assistance and care. I use a sit to stand lift to get me to the bathroom and to put me in bed every night. This is not because my legs are completely gone, thank God, but because of the overwhelming spasticity that leaves me so rigid…it’s very difficult to move my legs most of the time. This is why my feet have to always be sporting AFO’s or night splints, to keep my whole body from locking out straight and sending me flying out of my chair to the floor. I also require ceiling track lifts to put me on the floor to stretch and to get me into the bathtub or shower. God has been very gracious in making sure that I have all of the equipment that I need to function within my home. The difficulties of my current symptoms, however, make leaving the home impossible on most days. I will occasionally have a really good day where the stiffness has let up enough that I can make it into the car. It’s then that I get to venture out to the store for an hour or so before needing to head back home.

Do keep in mind, I have been diagnosed with relapsing REMITTING ms. And I was only first diagnosed in June of 2009. Since then I have progressed to where I am now…with two very close calls in between (I almost died). Maybe this will help people to understand why I am so determined to win this battle. This is not what they said it was going to be. This is not how I was told RRMS goes. This doesn’t fit any of their “molds”…so, to me, that says their ways are NOT going to fix it. So I need to be workin on some new ways! 😉

I have tried everything that I have discovered so far that shows any chance of promise or reason. Everything from gluten free, to LDN, to battling candida, to lyme testing, to paleo, to AIP paleo…and I’m still searching…still refining…still learning. And as I do, my recipes change, my diet changes, my supplements change. But the goal remains constant. Proving to the world that God created a body that heals. That His works are perfect. And that the faith of a mustard seed will move mountains.

I am currently in a relapse again. I have lost the use of my “strong” leg…the right one. And of course, it is a brutal blow when I have battled for so long…but no matter how bad I just want to throw in the towel sometimes, I’m too stubborn to quit. I have to laugh at the amount of times that I get mad at myself because I just can’t make me give up. Because I know how it feels to have nothing left…but when I’m down to nothing, God reminds me that He’s put me here for SOMETHING! 😉

So this is the battle for my temple, and how I’m fighting to rebuild it.

Comments

  1. And she’s not exaggerating about “just about died”! I, too, was sure we were going to be planning a funeral………twice! This Mama could only go outside and cry, and PRAY! And continue on with the range of motion exercises on every joint in her body to keep them from locking up completely. It breaks a Mama’s heart to see her child struggling and fighting just to survive, to move even a finger or toe. But God has brought her back to us, and she keeps on with her researching and determination to find answers. Maybe this is God’s plan for her, to find answers! KEEP IT UP,LIZZY!! We love you!

  2. 100% agreed. As Amy’s husband I am in this fight with her day in and day out. My wife is probably the most determined person that I have ever met, and I know that one day she will win this battle. She has been blessed with an amazing gift to be able to sift through medical journals, and research how exactly food and nutrition plays into overall health, as well as its affects or causes of various diseases. I will always stand by your side baby, and will love you forever no matter what happens.

  3. Love you both, very much! 😀

  4. What a beautiful, strong, inspirational story! You made my day today with your strong spirit. I don’t have MS but I have a closer friend who does. I know she faces some of the same fears that others with this debilitating disease do, and that’s why telling your story is so important.

    • Well thank you so much for your kind words! 🙂 My prayers go out to your friend. I hope she is finding ways to find relief from her battles with this disease.

  5. Very proud of you sister. I love you!

  6. Amy,
    You amaze me! I wonder how many people could handle what you do with even half of your determination and spirit and positive attitude! You are such an intelligent, gifted lady and I have known that since the time we met. I am sorry you have to suffer so much and I admit I don’t understand why. You have so much to offer others! But I trust God and I know that He is good. Your website is awesome and I know you are helping other people. Thank you for sharing your gifts. You are an inspiration! I pray God will give you increased strength and health. Please, Lord, touch Amy with your healing hand.!

    • mrsmadel says:

      Thank you so much for your kindness and friendship Susan! I am truly humbled. So blessed to have you as a friend! 🙂

  7. ur doing awesome keep up the great work old high school classmate n i’ll just keep producing that wonderful crop that’s gluten free just for u

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