my new best friend

I cry when I finish a really good book. The ending doesn't even have to be sad. If I loved the book and I turn the last page. I weep. For real. Like sob out loud and bellow, "oooooooooooooooh, that was so good." or "noooooooooooo, I don't want it to be over." And then I immediately think of at least five friends that I need to buy a copy for so they can share in my new obsession with the author that is now my best friend. I spend time googling the author and watching every video posted on youtube and stare at every photo I can find of this fantastic writer that reveals a bit of who they are. The Internet is a crazy, fascinating tool! The fact that people can read my "diary" is kind of freaky. Yes, I know it's totally bizarre that I put it all out there for anyone to read.
Which brings me back to the point I was making earlier about discovering a story that captivates you. Glennon Doyle Melton in "Carry On, Warrior" did just that for me-she put it all out there. The fact that I refer to her with three names just proves the fact that I don't really know her. But I think I do. Or I need to. OK, I'll admit that I want to be her buddy. I want to be able to stop over at her house and hug her and say thank you, Glennon Doyle Melton. And just bawl and tell her we have absolutely nothing in common. I would then go on to tell her that I just lied and apologize because true friends don't lie. I would grab her hand (in my dreams, I am not in a wheelchair) and through my tears tell her that I am trying my best to love God, too. I would confess that I feel stuck and so lonely and even scared but after reading her words, I know these feelings are just fine. I thank her again while squeezing a little harder (I never let go of her hand) and I probably would grab her other hand with my free hand and smile and say, "I can do the hard things now. Because of this book. Your words."
I am sure at this point Glennon Doyle Melton would be totally freaked out and before I grabbed her other hand, she gestured to her oldest son, Chase, (good friends know their friends kids name) to call 9-1-1. I am not totally sure what gesture she used, but he would know. Chase is smart. Before the cops show up and handcuff me and tell me I have the right to remain silent, I hug Glennon Doyle Melton for the last time and walk backwards to my car (it would be my Montero since I am not in my wheelchair *sigh*) while blowing her kisses.
I am sure you can tell this book had a profound effect on me. I want to live differently because of Glennon Doyle Melton. I need to purge all my "uglies" and trust that in His time, He will make them beautiful. That's what He does. So instead of viewing FA as this three headed monster that is never welcomed, I am challenged to embrace FA and know that doing the hard thing, is learning and loving Him.
Glennon Doyle Melton says so.
Like page 262-263 in Carry On, Warrior: "My destiny is to remind you to look up from the castles you're building in the sand  long enough to notice the cathedrals that God's building all around you-without you, without your sweat, without your tears, without your consent. While you dream your dreams, he's busy building your destiny. And there is as much beauty in your destiny as there was in your dream. Let go and believe that whatever it is, it will be beautiful." 

...and Gungor tells us too in this song.  Click here and then put it on repeat.

"Lady" Ga Ga treating me as if I were Glennon Doyle Melton

It was a whirlwind.

This has been the book of choice for me and my friend, Mary Jo who read it at my visit last week to USF. Jo hates has her picture taken so this was the best I could do. This was in the room where I had blood drawn for 12 hours. On the very first draw, the nurse hit a nerve bundle. Before this, I had no idea a "nerve bundle" was even a thing. I do  now. And I hope I never ever feel one again. It was awful. After I screamed and Jo jumped up yelling, "get that out! something is wrong!", Kelly came running down the hallway to check out what was happening. Needless to say, my trust level for the rest of the day was shot. It was a pretty long, annoying day.
The next day was the eye exam. They dilated my eyes. I forgot my sunglasses. You put the two together and I could not see for 4 hours after the test. Sunglasses will not be forgotten again.
Wings of Mercy was not able to fly me this time. Jo and I were able to fly stand by on  commercial. The good news is that we were able to get on every flight! Barkley is a fantastic traveler so the times Jo and I weren't able to sit together, I didn't have to worry about him- at all!
We got to eat at my favorite places and stop at my favorite thrift store so that outweighed the fact that the camera broke on the first day!
As always, it was so encouraging to connect with Dr. Z and the team and remind myself that it will be all worth it when that cure is found!

me and Dr. Z

wheelchair to unicycle.

photo credit goes to my friend, Josh.

Saturday, May 18 was Friedreich Ataxia Awareness Day. I am totally bummed that this is even a day. At the same time, I am elated that it is a designated day. That means people are aware and fighting like crazy for this awful disease to be eliminated. 20 years ago I had no clue what FA even was and what was ahead of  me living with a degenerative disorder. We all live with 'could have, should have, would haves'...I have a ton of those.
But I long to live in the "what will be" or the "what now"? The above photo hopefully shows that. Although a bit disturbing, I think it's hilarious and so exciting for what lies ahead for the future of FA. In efforts to raise awareness for Friedreich's Ataxia Awareness Day, FARA hosted a nation wide campaign. The hope is that soon FA will no longer stand for Friedreich's Ataxia- so what will it represent? It is crazy to allow myself the possibility that one day FA won't be an issue and I will feel awesome!
Next week is my 4th visit to USF.  Last month I checked in over the phone. It's been a long month. I am anxious to return and check in with those in my life who are committed to finding a cure. Their dedication is contagious. It motivates me and reminds me that maybe one day I'll ride a unicycle to work and not my wheelchair.

day after day.

"I’ll be with you as you do this, day after day after day, right up to the end of the age.” This has been ringing in my ear since Tuesday of this week. I trust that is finding that place in my heart that can be occupied by loneliness. It is a reminder that I am not alone- ever. If I picture a friend telling me this over a cup of coffee, I am sure my eyes would fill with tears at the moment. But as soon as they leave, I am quite certain we would eventually forget about each other. Not intentionally, but life happens.
The cool thing about this verse found in Matthew 28:20 is that it is the words of Jesus spoken to me and you, the friend I forgot about. He is always with me. I am never alone- ever.
For me, at this moment, that is so comforting. I won't lie and tell you at other times in my life that has been terrifying. 
Having FA can be lonely. Most of the time, I feel forgotten. It is such a good reminder that He is with me day after day, right up to the end...a true friend indeed.
It is about this time when I begin to tap into the anxiety regarding the details of my next trip. I know it will all come together. It always does.

 

It's time to go back. I've missed this place.

...just barged right in

I'm stuck inside my head today. I'm sure it's because I literally feel stuck inside the house. This Michigan Spring is for the birds. Well, not really, they must be regretting leaving the warmth of the south. I know I would. I think everyone up here is more than ready for the freedom to go outside without your nose hairs freezing together or your eyes tearing from the frigid wind.

outside the hotel in Florida- I can feel the warmth of the sun through this photo! :)

Today, I didn't need the help of the bitter air to help the gushing of tears. My bitter spirit is doing a great job in that department. Days like these in which A is certainly capitalized in FA, I long to push the fast forward button and move on.  But I lived with this long enough now that I know I just need to dive into my grief and allow my frustration, disappointment and even jealously to reside for a bit. These feelings will move on. I trust that. So, I cried this morning. No, I literally screamed and cried. And made room for the tears that fell down my cheeks. I am thankful for Barkley and his big brown eyes and wet square nose that laid by me as I threw a little fit. As I stroked his head and wept, I knew I had to allow my feelings in. They didn't ring the door bell, send me an email, tweeted or text me to let me know of their arrival, they just barged right in and took over for awhile. I am okay with that. I really am. It doesn't mean FA went away or that life will be easier. I just had to respect what was happening at the time.
Today, I am stuck in my head. FA is making my life appear a little grey or even foggy but I am not residing in this place. I know this, too, shall pass and the birds will sing with delight. I will be able to go outside without bundling up and I will be able to breathe without my nose hairs freezing. And the best part will be when I thinking NOTHING of FA. Oh, what a day that will be...until  then I'll repeat Deuteromy 31:6 "Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you or forsake you." and get THAT promise stuck in my head.

a pick me up.

This therapist needs some therapy. The lack of sun and the continual rain and cold temperatures is certainly taking a toll on my attitude. In times like these, I am thankful that I live alone. The other day my sister said she was hiding in her room because she and her husband were not getting along. It was at that moment when I realized that if I am in a bad mood the only "people" I have to deal with are  my dogs and they love me no matter what. Even when I am jerk. And don't worry, I know my dogs aren't people- it was just an analogy.
So tonight I will post some photos that make me smile from my last visit to USF. These are the memories that keep me going. And give me hope for a cure!

Jo loved this photo cuz I couldn't talk while they took my temperature. I guess she thinks I talk a lot. Just another bonus that I only live with dogs!

When we arrived in Florida. I received an email that Wings of Mercy wanted to take me home. They didn't need to offer twice. Flying commercial versus private is a no brainer. And it sure didn't hurt that it was a jet!

Jo, Barkley and I inside the jet

I am so grateful for Wings Of Mercy!

Clinic #3 and Dr. Z

I think I channeled a bear and went into hibernation this past week. I opted not to spend Spring Break with my family this year as every second of vacation and sick days are spent on this clinical study. As it is, I have no more paid time off. Well, throw that responsible thinking out the window. I have been sleeping this "bug" out of my body the whole entire week and weekend. Who knew one can sleep so much?? I put any bear to shame the past 100 plus hours! While this little burst of energy lasts, I thought I'd better update the blog for the few faithful followers (say that five times fast) out there.
This trip wasn't without a few hiccups but overall it went great. Wings of Mercy had to cancel their flight a week  before. Needless to say this caused a bit of anxiety. I was blessed with a friend who allowed me to purchase tickets at a fantastic deal with the catch that every flight Jo and I were on stand by. It was an early start to the day as we arrived at the airport at 5 AM in hopes to get to Tampa. And we did!

our second flight of the trip down there- NY to FL!

Upon arrival, Jo and I found an AWESOME second hand store and treated ourselves to one of my favorite food places.

It was emotional visit for me. Everything about it. The peace I feel. The joy of the sun on me. The warmth of familiarity. The fondness of "new" friendships. The commitment to a cure. The confidence in God's plan. The whole thing.

My parents stopped by on their way down to their vacation spot for the week. It was fun to meet at USF and act like it was "no big thing" we were able to do that. COME ON!! HOW COOL IS THAT??!!! Obviously, I thought it was pretty cool.

And my reason for the visit was clinic #3 and Dr. Z and team. As usual, it was the highlight. I sound like a broken record but it is so refreshing to feel as if you play a part in the cure for FA. Tears were shared and hearts were nudged as we continue to do our part in the bigger picture of what God has painted.

Now that this bear is out of her cave, it's time to work on my next  clinic appointment in May. The month of April will be monitored over the phone. Maybe the next trip I'll return home to Spring!