holy discontent

Flying back from my appointment at USF on Monday, my friend and I were discussing -okay, yelling over the planes engine, the happenings at the appointment earlier that morning. It was all so overwhelming- it still is.
She reminded me of a conference we attended together four years ago in which the speaker asked us to write down what our "Holy Discontent" was in our lives. "I wrote your name down, Holly. I hated that we were watching you waste away. I felt like we had to do something."
Tears streamed down my face as I realized God knew she would be the one to witness the miracle in the doctors office that day. I was so overcome with a sense of God's love for me as I thought of so many of my family and friends, like she, who believed in me and encouraged me to hang on. There is hope. There always is hope.
And I felt it like I never had before when I was asked to run through the series of physical tests they challenge me with each month. The first month certain things that were asked of me to do were impossible. Physically impossible and emotionally discouraging. A holy discontent.
This visit, although it is still not known if I am on Chantix, the tasks I had to perform were do-able! I can not remember the last time I stood on my own without any assistance. To the "abled" bodied person, the above video may seem minor but as FA has robbed my ability to stand, this video means so much. I was even able to steady myself when I felt I would lose my balance. If that weren't enough to believe in miracles, Dr. Z gathered a team of doctors to witness me walking 50 feet with just Delsie!! The feeling was so bizarre to me, physically and emotionally, I didn't know if I was going to throw up or cry. Thankfully, I cried. No, I wept.
I know we still have a long way to go for the cure of FA but I don't think my friend is as discontent anymore...
I am walking and standing on Holy ground.
AMAZING!

the difference a day makes...

I continually have reminders that I am different.

Some days I just want to scream from my wheelchair, "Are you kidding me?!!" Yesterday was one of those days.

I ran errands in the morning and met a friend for lunch. The restaurant was busy and tables were pushed together to accommodate the large parties that gathered. As a result the aisles were quite tight- even for an "abled" bodied person to walk through. Now picture me in a wheelchair and a large dog navigating the oblivious crowds. Or not so oblivious. This is when frustration comes into play for me. As soon as I approach a table to pass by to make my way through the cramped quarters, people stop talking and stare. I stop. I can't squeeze by. "Surely, they will move. Just be patient." Nope. Still staring. I am stopped. "ARE YOU KIDDING ME?!!" I take a deep breath, smile and ask the person if they would mind moving so I am able to pass by. A reminder I am different.
After lunch I recognize that I am a little more sensitive and inhale a bit with the hopes that my exhale would relieve my bad attitude. Not so much.

I was as equally angered when I was at a different location to meet with another friend for coffee. As I made my way to the restroom, I assessed the situation and realized the location of the bathroom was not designed by a person in a wheelchair with a service dog. If it weren't for a full bladder, I would have held off until I was home. "You can do this, Holly. Besides, those girls will help you." After two failed attempts of keeping the door open so Delsie would be able to pass through, I knew it would be impossible. I glanced over at the two girls figuring they were deep in conversation, not aware of the predicament I was in. Nope. They were staring. Not moving. Just staring. "ARE YOU KIDDING ME?!!"

Another reminder that I am different.

But it is because of this difference that I am part of this clinical study in the hope of finding a treatment or cure for FA.

So, I have the bad with the good. We all do. I just happen to be in a wheelchair with a service dog.
I am different.
And I am glad that we all are.

Oblivious and all. Frustrated and blessed. Hurting and humbled. I'll keep pressing on.

Tomorrow I leave for my third clinic.
It's fun being different.
Even with painful reminders.

feelings or faith

A new day. New possibilities. And finally a new post. As time goes on, the "newness" of my involvement in this study doesn't feel so new anymore. I'm not on a high, conversations don't center around it, monthly trips to Florida seem like the norm and there are days that I almost forget to take the pills. I have figured out when is the best time to take them to avoid the nausea. Still don't know if it is the real deal...and that's not for me to figure out.
I have been fighting a major cold/cough these past few weeks and have become quite the hermit as I prepare for my third trip to clinic Sunday. It hurts my ears to even think about the pressure flying in the plane.
When I don't feel well, everything is HUGE to me and doing life is difficult. I get more frustrated with FA and the effort it takes just to function.
So tonight, I have to go on faith and not feeling...keep pressing on.

says it all...

A common question I have been asked after a trip to Florida is,
"Are you exhausted when you return home?"
It's been said a picture is worth a thousand words:


I almost fell out of my chair from laughter when I scrolled through the photos the next day.
(check out the mirror behind me)
Thanks, mom.

baby steps.

Before Delsie came into my life, FA robbed me of the ability to walk. I wanted to walk as long as I possibly could. I was frustrated being in a wheelchair, knowing that I had use of my legs but absolutely no balance. When Delsie entered the picture eight years ago, she made the impossible possible. She got me out of a wheelchair and kept me walking for four years.
Although she is 10 yrs old and the FA is still progressing, together, we adapt. I wouldn't be able to do life without her.
So on my last visit to the clinic I was asked to walk 25 feet again. My first visit to the clinic, I was not only helped by Delsie but two other people were there practically holding me up as I attempted to make my way down the hall 25 feet. Delsie literally had to brace herself against the wall to support me as I was quite unstable.
Don't get me wrong, I wasn't running the hall but I did it! Just me and D this time! Okay, I needed to be assisted shortly after my body struck the pose of the leaning tower of Pisa. But it felt different and reminded me of the day I walked with Delsie for the first time.
Who knows if it is all mental. Time will tell and more work to be done in the treatment and cure of FA.
We're getting there.
One foot in front of the other.
Leaning and all...