A big ‘ol thank you

Today is World MS day. I could write a blog about the struggles MS has brought to my life and how incredibly hard the last 13 years have been. But that would just be a bummer to read. So instead, today, I want to write a thank you note (like a good southern lady). 

Thank you to my mom and dad. They graciously let me stay with them and help me when Justin has to fly. Thank you especially to mom who helps me do basically everything! You’re the best! 

Thank you to my sister Amy, who comes and helps even when she has mr. Energy, Lukie to deal with. You have no idea how much it means to me!

Thank you to my mom’s friends, who stepped up, selflessly to help when mom was out of town and so was Justin. You show who Christ is in those moments. 

Thank you to my girlfriends, yall bring me joy by simply seeing you and getting much needed laughs! I love our girls nights so much!

Thank you to Sarah. MS is really hard and I don’t like bumming everyone out with what’s happening. But you. You allow (if not force) me to be truthful about what is happening and how in really feeling. You are awesome!

Thank you to my amazing husband! You knew what you signed up for. But things have become harder in the last four years. But you have never wavered. When I have bad days- physically or emotionally, you are there, loving me through every moment. When we got married, I thought I got the man who was everything I ever wanted. You are that times 10. I am so beyond thankful for you. 

To all my fb friends, thank you for your encouragement, funny posts and pictures! There are days when MS is a very solitary existence, and being allowed to join in yalls lives is really nice. 

I could say thank you to God, but I think this verse sums up my thoughts and thankfulness more than I could say:  

 
I am so blessed by the friends and family God has given me! That’s why today about yall, not just me! 

This won’t help you

Going up to Chicago, I wasn’t sure what I was thinking about this treatment. Two months of chemo, a painful bone marrow procedure and who knows what else. I had read about this dr and he had been working with stem cells with some success for almost 30 years. So I thought, let’s go up and try, never hurts to have a world renowned neurologist specializing in ms take a look at my brain and spine. I honestly thought I was going to be ok no matter what he said. But the moment he walked in, noticed my right hand and arm didn’t work I saw a look on his face that basically told me, this isn’t going to happen before he said anything. After an evaluation going through everything that has happened to me on my journey he confirmed what I was already feeling: “I don’t think this will help you” and I felt crushed. 

Then, I started thinking, in the last 12 years I have been told of many different drugs, pills, juices, diets, medical devices, etc, that we’re going to be the cure for my ms. Every time I got my hopes up and every time my heart was broken when it didn’t work. So this time, before having to go through anything hard, putting my body through chemo with possibly irreversible effects, the Lord protected me and closed the door. Don’t get me wrong, I was (and am) sad about the no, but I’m glad God kept me safe. 

Now I have to wait for the next thing. I know there will be something eventually and just have to be patient and wait. Two things I’m not really great at. But as I know from my life verse “perseverance must finish its work so that it may be complete.” 

I want to thank yall for your amazing words of encouragement. Please keep them coming. I love to laugh (and need to), so if you ever see a song, verse or even a meme and think, “Ashley may like this” I will. Send it my way. God has been so good to give me such amazing family and friends to walk through this tough journey with me. 

I can’t finish this blog without thanking my amazing husband. He fights through every day with me and is there every step of the journey. He pushed me all through Chicago in the cold and snow and kept me calm and laughing when I felt like the world was coming down on me. I’m so blessed to have this wonderful man on my side! God is good! 

Joy to the World

“He rules the world with truth and grace”. Last night in church we sang this song. As you can imagine, with my mom’s name (Joy) and her love for Christmas, I heard this song a lot growing up. But since last night, this line has really been resonating in my mind. We live in such fear because we forget who rules. I’m not saying that in a ’90’s kid “you rule” way. I’m saying, God is in charge of everything, He literally rules all. He does it with truth; I think lots of folks have forgotten what this word means in what feels like our totally backwards world. And grace; ya’ll, I am so thankful for grace! I mess up and have to repent to the Lord more than I would like to say, but that’s ok. He rules with truth and grace! There is so much truth in many Christmas songs. I love be able to praise God in fun ways every December! What is your favorite truth in a Christmas song? 

  

A year of hope

I was looking through my memories on Facebook this morning and realized it was a year ago today I shared my stem cell news to the world and began fundraising. To this day, I am still blown away by the incredible generosity of family and friends. As I have stated before, MS is a very lonely disease, but the words of encouragement and love I got from so many, filled my heart in ways I will never be able to fully describe. 

When I went to Trinidad, knowing the support I had got me through some tough days: (laying with your head lower than your body for 12 hours is whatever the opposite of awesome is). 

But God has been so good and faithful! Yes, the results weren’t what we were hoping, but a few good things have happened: I am no longer on a medicine with acidity that was destroying my teeth, eating at my liver and making it impossible to fight off any bug. Also, I can enjoy warm weather again and no longer hate the month of August!

To me, these are 2 incredibly awesome things!  Maybe not the answered prayer we were hoping for. But as I look back I realize this WAS the year of answered prayers for our family in the form of precious baby Luke! There had been much prayer for him and while we were looking for 1 answer to prayer, God was answering another!

I am so thankful for all of you who have walked and continue to walk this journey with me. I don’t know the answers and I don’t know how long. But I know this, God is good! Whatever is happening today in your life today, keep repeating that 😊

   
    
    
   

Tuesday was awesome!

Last week Justin and I found out that not only were we getting to go see the Giants play the Braves (thank you Jim Allen); but Melissa Meadows was getting us down on the field for batting practice and possibly meeting some of the Giants! I was so excited! Then, we looked at the temperature and saw it was going to be 98 degrees that day. I got nervous. For as long as I have had MS, 11 years, heat has been one of my greatest nemesis. I have seen meme’s that say “brace yourself, winter is coming”; that is the way I feel about summer. It’s awful in Atlanta. My legs and arms turn to jello or get stiff as boards, that just depends on the day. I get dizzy, light headed, get a headache, sometimes struggle to take full breaths, my skin gets clammy, and I feel like I have a fever. 

So on Tuesday, I was nervous. I kept thinking, we will go, even if I have to take an ice bath afterwards. 

We got on the field, ya’ll, it was hot. But, none of my symptoms ever happened! Ever! I can’t even explain to everyone how awesome this was. For over a decade I have avoided outside for the month of August. Now, thanks to my stem cells, I can enjoy summer again! PLUS, we got to meet Jeremy Affeldt and I got Bruce Bochy & Brandon Crawford’s signatures! 

When I was thinking back at how hot I used to get, I had to stop and thank the Lord for this amazing healing! My heat sensitivity was never really something I could explain, but God has been so faithful. These stem cells are working and cooking, but there is a long way to go. Please keep praying. Thank you all for your constant support!

   
    
   

What if I stumble?

I lost my cool yesterday. I have had a good day, I was even able to stand up in church for part of a song. Probably could have stood longer, but I wanted to focus on worship and all I was thinking was standing. When I got home, I was trying to get around my bathroom, turned wrong and was stuck. It wasn’t a big deal, I could easily have moved and not been stuck, but I started to cry. 24 hours later I honestly still can’t figure out why I gave into my emotions at that moment.
I knew I needed to have a little Jesus time, a little time to talk and listen about what was happening. Everything has been going really well lately (I will be posting a blog update in a few days), so why was I frustrated? I turned my praise mix on spotify on and the first song that came on was “what if I stumble”? By D C Talk. The words hit me like a ton of bricks and made me realize I was looking at myself, I was letting the fear win. Here’s the line that got me the most:

“Father please forgive me, for I can not compose the fear that lives within me or the rate at which it grows. If struggle has a purpose on the narrow road You carved, why do I dread my trespasses will leave a deadly scar?”

God completely nailed my heart with those words. I can’t say it any better, so I won’t try. But that is exactly what I’m dealing with and fighting through right now. God is so faithful to meet me just where I am.

Have a blessed happy day!

Ashley 

Unbroken?

Last night we watched the movie “Unbroken” if you haven’t seen it, I would highly recommend it. It is the true story of Louis Zamperini, an American Olympian and POW. The things he goes through in the camp are horrific. Before he got to the camp, he was in a plane crash and survived on a life raft with his two friends for 45 days before they were “rescued” by the Japanese. During a stormy night on the boat where it looked like they may not make it, Louis promised God: “get me out of this and I will dedicate the rest of my life to you.” Then he spent many more days on the boat, time in solitary confinement, and a few years in a prison camp where he was beaten and starved. But a few years after he was free, he was able to see God’s faithfulness through all of it and did dedicate the rest of his life to the Lord. He died last year at the age of 97. 

It got me thinking, as I was watching the movie, I could see God’s faithfulness to Louis. There were such clear signs. But in my own life I don’t see it. I don’t give up, because much like Louis: “if I can take it I can make it.” But I fail to always see where the strength is coming from. I always see after, but during this process, I also want to see during. 

The countdown!

I honestly can’t believe as I am writing this we are less than 3 weeks away from going to Trinidad. As I look back on the last few months I am blown away by God’s guidance. There were a few things that needed to happen and unbelievably, everything has come together seamlessly. I had been praying that if we weren’t supposed to do this, something would not work.

Here is the timeline of how well things worked:
Filed for a passport: got the passport 13 days later
Raising money (which I thought would be the hardest part): raised $59,000 in 24 days!
We thought we were going to india(a 16 hour flight) then before we bought tickets found out we could go to Trinidad, a much better flight.
The only hang up we had was getting my medical records. I was frustrated by the way they handled this, basically they forgot to mail them, so after a few weeks we had to drive down to pick them up. God was protecting me, because we didn’t get the records right away, we weren’t able to send them, because of that, we weren’t officially signed up and that was how we got to go to Trinidad.
All I can think seeing all of this: God is faithful.

Thank you all for your prayers and support. I’m so excited to finally try something proactive for my MS. I don’t fully know what the stem cells will do, but I’m excited to try.

Humbled

A few months ago when we started looking at going to get stem cells, I saw how much they would cost and my initial thought was: “how will we ever raise that money?” Then, we started the fundraiser and the money started pouring in. Some from people I was shocked by. Amounts given by friends and family that, if I could stand, would have knocked me over.

I have to be honest, right before we started, I definitely was lacking in faith- being sure of what I hoped for and certain of what I did not see. Through the many encouraging words, shares and the sacrificial giving, my faith was restored! God is up to something! I feel blessed and completely humbled that God is using me in this way to show His power & glory!

Thank you all so much! I commented to Justin today that I thought raising the money would be the hard part, but it was so easy that I am now preparing for the fight to come. I humbly ask you with join me in praying for a few specific things:
-all the details leading up to India
-the flight. It is long. I think you understand.
-for the stem cells to do there thing.
-for my heart. There is a chance the stem cells may take a while to get going. That I won’t lose faith and continue to trust God through all of this.

Words of encouragement is my love language. I can’t even tell you what your words have meant to me. Thank you.

My 2015 words to live by

“For everything that has been, thank you. For everything that will be… Yes!”

Every year I like to pick a word to try to live by that year. I had picked the word trust for 2015 and then I saw that quote, which I think perfectly sums up my heart going into this year. The last 11 years have been really hard, but I am so grateful and thankful for how God has met me every (literal) step of the way and even when I couldn’t step, He has always been there.

This year is bringing new things with the stem cells, I have no idea what they are going to do. I want full healing. But, I am simply going to open my hands and say “Yes” and trust God in the whole process. Proverbs 3:5-6 says it better than I ever could “trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge Him and He shall direct your path.”

If I could humbly ask for anything, please pray that verse stays in my heart. That when times get tough, I will continue to trust God no matter what is happening. That my heart will not lose faith and trust in Him!

I would encourage all of you to find your own word or phrase for the new year, it is so much better than resolutions.

You have no idea the amount of love & support I have felt from everyone. Please share the link with everyone, not just for money, but I love getting my story out there. I have already been connected with a few others fighting MS through it. We are all in this fight together:
http://www.youcaring.com/medical-fundraiser/help-ashley-walk-again/274861