my pouch.

Every Tuesday at Bible study we have a time of prayer. One of my friends prayed specifically for my first clinical down to Florida. Her words went something like this, "Lord, help Holly to know she is more than Friedreich's. Allow the people she comes in contact with to see that, too."

Fast forward six days later down at the lab for blood work during the second half of the tests...we enter the waiting room at the lab. Being in a wheelchair, I barely can see over the high counter. My eyes connect with a not so friendly nurse, in which I only can see her eyebrows. . "Hi. I am here for blood work" I say, while practically lifting my rear from my chair and extending my torso in hopes that she is able to see my face. My feeble attempt was in vain as she hardly looked up from what she was doing and instructed me to sign the clipboard.
Another nurse called me back in the room to draw my blood- phew-Miss Crabby Pants won't be taking her anger out on me with a needle. The rooms are small. So me, a wheelchair, my friend, the nurse and Delsie all attempted to squeeze in. Being the polite dog she is, Delsie laid behind me and was half in-half out of the door.
It didn't take long for me to realize this nurse was going to extract my blood with a normal size needle. I quickly told her that although my veins look juicy, a butterfly would be needed. Thus enters Miss Crabby Pants who is the only qualified nurse in the lab to use a butterfly.
As she enters the tiny room, she lets out a disgusted sigh while putting on her latex gloves. It is apparent that she is not pleased that a dog is in her way and she steps over Delsie.
"Excuse me, pouch!" she mutters and then realizes her blunder and says to me without a smile, "I didn't mean to say pouch, I meant to say pooch."
I looked up at Miss Crabby Pants and shrugged my shoulders, "tomato, tamoto?...who really cares?!"
It was at that moment that I became a person to her and not just another patient. And she became someone to me. We laughed together and from that moment on, our encounter was something bigger than Freidriech's Ataxia.
All because of a prayer from a friend.

So thanks, my friends, for praying and encouraging me on this journey-I couldn't do it with out you.
It's so much bigger than me...
It's day #9 and I increased the pill to two times a day instead of just one. Time will tell...

patience...

The mind can play tricks on us. Day #6 on Chantix and I should be out training for my first marathon. Yeah right. It has been interesting to not only wonder myself if this drug is going to have some benefits but answer peoples questions of how I am feeling.
Do I notice anything different? The short of the long answer is "no". But patience is a virtue- so we've been told. Psalm 46:10 reads, BE STILL AND KNOW THAT I AM GOD. In everything. Even after 8 months of this trial and I feel no significant improvement. That doesn't mean that Dr. Z has not made strides in a cure or a treatment to FA- I am just humbled to be used in this way. Don't get me wrong, it would be incredible to answer the question, "How are you feeling, Holly?" to simply hop out of this wheelchair and run with you. But for now I am trying to be still and really know He is God.

news clip

Even though this disorder as progressed over the past 17 years and I have lost the ability to walk, in my mind I see myself as a completely "normal", physically fit person.

Last summer I cheered my sister on in her fist marathon in Indiana. I was perplexed after the 5th runner smiled at me and said "Hi" and thanked me for coming. Seriously, did I have a booger hanging out of my nose?! Was my fly down?! Why do these runners keep singling me out?!! By the time the 20th sweaty, panting runner acknowledged me, I had one of those OPRAH "ah-ha" moments. These marathon runners saw me different- I quickly became a girl in a wheelchair with a service dog. It was, and is, a fact that I wouldn't run in a marathon with them and maybe for that moment, they gained a perspective and got the 2nd wind that they needed to get through the race.

I forget that I am in this dumb chair and have a beautiful black lab to help me "do" life. So, when News 3 called yesterday to do this story, I fought back my pride and did it. As I watched this clip last night, I battled the tears as I was able to see so clearly what FA has taken from me.

Well, sorry FA, I want it back. You can't have it. You are not going to win. I hate what you have done and are doing.

So, the game is on...

Day #5 on Chantix. I will slowly be increasing to a double dose next week. The investigators called yesterday and asked me a battery of questions:
Sleeping? yep.
nausea? nope.
suicidal thoughts? nope.
depressed? nope.
but I will say I have had some BIZARRE dreams.

disappointments and expectations

Get-togethers at the LeBlanc house tend to be a bit insane. Being an aunt to my nine nephews and nieces is one of those things in my life I am extremely proud of. I have to be honest and say my heart grieves that I have not added to the count of grandchildren with children of my own. (yet?) But the moments with my sister's children are priceless and warm my heart.
Like the other day when we gathered as a family before our meal. As always, Pata (my dad) asks if anyone would like to pray. With our heads bowed and hands folded, my six year old nephew, Jagger, begins,
"Dear God, thank you for this day and help my Aunt Holly to walk again."

Just as it did then, my eyes fill with tears. I acknowledge that life is filled with disappointments.
BUT it's
Day #4 on Chantix and I am chosing to be filled with expectations of what God is capable of...right, Jags?

At least for now no side effects...phew.

Day 2 and an inch...

This is my notebook filled with the protocol for the study the next 8 months. Each patient has their own, which is about 7 inches thick. Not being a detailed person, this kind of thing freaks me out. Thankfully, this is for the team to fill out. I just take the pills. And I got confused by the that. "Is it kit #4 bottle #1 that I need? or is it kit #1 bottle #2?!!" Oh boy- I may be a chain smoke after this is all said and done.

We finally arrived at our hotel in Tampa about 10:00 Sunday night. TGIFridays was attached to the hotel for people like us without a car. After an entire day without eating or drinking, it was a welcomed meal in our empty stomachs. I slept maybe an hour (okay, it felt like an hour) and we hopped on the shuttle to the clinic at USF. It's HUGE. So big that they transported us in a golf cart when I needed to go to the lab for blood drawn. (Delsie was a champ!)

The clinic was 4 hours of a battery of questions from subtracting the number 7 starting with random numbers. Um, math is not my strong point. (just ask my Algebra teacher in 8th grade!) After being completely humiliated and feeling dumber than a bed of rocks, I had to perform a series of mouth exercises and speak certain words timed as they gathered a baseline.



I then met Dr. "Z"-the one who is writing this study and jumping through all the red tape. Not only do I love her for that but I just want to be her friend. And there are not many neurologists that I would say that about. (no offense if you happen to be a neurologist) She spent an hour with me - her bed side manners are to die for- she is phenomenal. Tests were comprised of rubbing my heel up and down my shin (that was about as good as my math skills), touching my finger to my nose and then her finger tip and moving my toes and fingers up and down. She wanted to see me walk and asked if I used a walker. I pointed at Delsie and replied, "you're looking at her." She was kind enough not to say, "I'd like to see this" but she didn't need to as her face said it all. After walking 25 feet down the hallway with D, she admitted her disbelief and recognized how well Delsie did (slippery floor and all) That's my girl!!


They filled out an inch of paper work on this visit-only six more inches to go! I have taken 2 pills - Chantix or sugar pill, who knows?- and at this point, I don't really care. I am so humbled and honored to play a part in what may be a treatment or cure for FA. All because a man with ataxia wanted to stop smoking, noticed improvements, told Dr. Z, she listened and did something about it. So now, 'lil ole me, with a dog and big hair may help eliminate for someone else the losses that accompany FA. What a tremendous gain. What a gift I have been given in this journey.

"however"

After our first leg of the flight when we were on the runway ready for take off, something happened to the plane. I am sure Myra (my friend who went with me on this trip) can tell you EXACTLY what happened. I, on the other hand, stress out in other areas.
(urine sample, anyone?)
I think my circulation is finally returning...

a quick update

I am sitting in an airport in West Virginia waiting for our plane to be fueled. It is hard to believe I only left yesterday morning. This trip has been amazing in so may ways. I think of how my pastor ends every sermon with Ephesians 3:20. I have lived this verse out from the kindness of our pilots to the appointment with Dr. "Z", who is writing this clinical study.
The pilots just came back with dinner...and the plane is fueled.
I could get used to this private plane stuff.
I will post photos soon.
Thanks for your well wishes and prayers.

preparation

Trying to prepare my heart and mind for my trip on Sunday...what???? Seriously- what does that mean?! I know enough about me that planning for things stresses me out. I do better to just do it. Someone asked me today, "how do you take your garbage out?" I just do it. Or if it's overflowing, I call a friend to help. So, preparing my heart and mind seems a tad hypocritical to me. "If there is a will, there is way" tends to be my motto.
The transportation issue down in Florida isn't completely resolved. However, my uncle reassured me that I would be able to rent a car for $25 if it is a 24 hour period. Ah, that's more like it.
My bags aren't packed but I am getting excited to begin this 8 month journey.
Tomorrow I will focus on my service dogs, Delsie, day off in hopes to raise money for the wonderful organization she came from, Canine Partners For Life.
And then my fight to eliminate this disability will begin...as if it hasn't already. I think I may be FA's worst enemy.
BRING IT ON! This chic ain't going down with out a fight.

cricket, cricket, cricket...

I envy people who are deep sleepers. I am not. And stress plays itself out for me in the night or should I say morning. Every situation becomes magnified and after being awake with the chirping of the crickets, for what seems like hours, I shake my head in disbelief that I burned the midnight oil worrying about such matters.
Last night, it was providing the right type of condiments on a sundae for guests and now tonight it is transportation once I arrive in Florida.
A good indicator that I am stressed.
So, here I am. Posting at 2:45 in the morning, up with the crickets, listening to my dog snore next to me and longing to be a woman of faith that God will provide. And He will. Sleep or no sleep.

In the wee hours of the morning when all normal people are in REM, (or if you are a Le Blanc girl, you're cleaning the kitchen floor or doing a load of laundry) I am going over the options I have once I arrive at the airport, to travel the 9 miles to the hotel. Yes, 9 miles.

Option #1: A taxi that would be $50 one way.

Option #2: a super shuttle for $74 round trip.

These options seem ridiculously insane to me. I would put my power wheelchair in high gear and "walk" the distance. However, since I travel with my manual wheelchair the speed in which I go, would bring me to the end of the airport terminal by the time I would need to be at the clinic the next day!

Oh, how I long not only to be a deep sleeper but to be a person who doesn't worry about condiments or transportation. It will all work itself out...
I think I would rather be mopping my kitchen floor or doing a load of laundry but this dang FA makes it nearly impossible to endure chores like these when I am awake, let alone semi-comatose and completely stressed out.

And now my lap top battery is blinking low and Delsie is awake now, too.
I will pick up some reading material with the hope that I will drift off to sleep. And when the crickets stop chirping, I think I'll phone the University and ask if someone would pick us up.

Everything will look brighter when the sun rises. Just when I fall into REM and Delsie starts snoring.

ready or not...

This is really happening.
What have I done?

Just got off the phone with the pilot who is volunteering his time and plane for my first trip to FL. So Amazing.

A Cessna 411. 4 1/2 hour trip. Leaving from Tulip City airport at 10 AM this Sunday, September 20. Clinic is on the 21st and we'll fly home that night.

Am I hopeful? Hopeful for a cure for this disorder? I must be. I don't think I'd go through this "rigga-ma-roll" for nothing.

And He provides. He gives me the hope I need.

Right when it's happening...

fly, fly away

Every flight I need to go by faith that a pilot will sign up for the particular visit to the clinic.

This is the case for the trip on the 21st. I am at their Mercy...

Wings of Mercy, that is.

10 days and counting for a pilot willing to fly down to Tampa, FL.

...just need faith as small as a mustard seed.

This is nerve racking.

...and away we go...

Back in the saddle again...an email from the clinic:

Here's a tentative schedule of your visit dates. We'll try to stick to them as best as possible.

9/21; 10/26; 11/23; 12/10; 1/18; 2/15; 3/8

The second sentence freaks me out.

One day at a time.
*sigh*
Moment by moment.

Now if I can figure out how to stay down there January, February and March...FA and winters in Michigan do NOT get along.

hot off the press!

This is a reply email from the administrator at the University of Florida as I sent an email today asking for any updates...

Hi Holly, The board met on Friday and yesterday to finalize the changes. We submitted it to our campus review board this morning and urged them to approve it as quickly as possible. I'm hoping no more than two weeks. We will let you know asap when we find out it's approved so we can finally get you in.

So, I am not forgotten. How quickly I tend to forget that.

And being the nosey person I am, I asked if she was able to share what changes had to be made. Quite honestly, I feared that maybe they needed to shave my hair off and cut my head open or maybe one of the participants committed suicide. (just wanted to be prepared!)

Here is her reply to my curiosity:

Hi Holly, The changes just have to do with checking in more often on the phone at the beginning of each phase. Basically we just get to bother you more often. :)

Seriously.

And where is that scripture that says, "do not worry about tomorrow..." The fro remains!

By the way, as I am eating humble pie, "The Eye is on the Sparrow" is playing on my iTunes.

so I wait...

Everything seemed to be happening with out a "glitch"- that should have been my first clue. I had the dates of the clinical and the schedule of when the investigators would phone me to record the findings. My good friend, Lynne, joined in on the excitement and agreed to fly down with me for the first clinical scheduled for August 31. I was matched with a pilot and the hotel room was reserved for the night. Wings of Mercy was planning to fly us home on the 1st of September.
That was until I received this email from the University of Florida one week before I was scheduled to leave:

Hi Holly,

I have some disappointing news. Unfortunately we have to cancel your appointment until a later date. The study investigators met yesterday and determined they wanted to make changes to the study and until those changes are approved we can't enroll anyone else. This means we have to cancel your appointment on Monday and when we get approval, we'll reschedule you. We will be able to reimburse you for the travel expenses you already paid for this flight, just send us a copy of your receipt or confirmation. I am very sorry about this. It certainly wasn't expected.


This news was a kick in my gut. I was shocked how violently I reacted. If you know me well, I can not talk and cry at the same time. This was evident in my first phone call to my parents after I received the above email. My dad answered the phone. "Dad, they called off the study!" It's something about the sound of your parents voice that bursts the dam holding back the tears. "WHAT?!", my dad replied. And that's all it took for the dam to break. "Holly? Holly?!" At this point I attempted to form words between my sobs. "Holly, I can't understand you. I'll tell mom to stop by."
Click.
I don't blame my dad. My reaction surprised me. At that moment I was weary of the fight. I was disappointed that the study was postponed for sure but more than this study, I was sick of Friedreich's Ataxia.
So after a day of allowing this "glitch" to defeat me, I woke up the next day with a reminder that "His mercies are new every morning. Great is His faithfulness."
I'm not going down with out a fight.
And so I wait...

a mountain that is an ant hill...to Him.

While I got accepted to the clinical study in Florida, the hurdle of transportation was lingering. I honestly didn't even think I would be this far in the process so I knew I needed to keep pluggin' away. God can move mountains, I kept repeating to myself so I knew He could get me down to Florida once a month for 8 months. I was at a cook out with some of my close friends and I hesitantly told them about the clinical study. "But it's in Florida and I have to get down there once a month." I think I expected them to agree with my dilemma and allow my doubt to take root. Instead one of me friends replied, "Holly, look into Wings of Mercy. That is why the exist. You are the perfect candidate." I looked around the table hoping to lock eyes with someone who showed any signs of doubt but instead all of my friends were nodding in agreement. So, another round of phone calls and emails and a packet of application; I waited.
In two days I was told that Wings of Mercy accepted me for a year of free flights down to Florida. Unbelievable.
He does move mountains.

He makes me wanna be...

I went into full gear for a solid month. Endless phone calls, emails and doctor visits. In the phoning process I discovered the clinical study in PA was full. My curiosity got the best of me and I called down to FL. The study allows 16 FA patients. 8 ambulatory (can walk without assistance 25 feet) and 8 non-ambulatory (which obviously was me). Before I knew it I was "pre-screening" over the phone with the administrator at University of Florida. Answering the easy questions, do I smoke? have a history of clinical depression? am I taking any medication? Not known for being a good test taker, I was pleased to hear that I passed.
Wait! Passed what? What did this mean? I soon discovered that it meant I had to pass the formal screening. Blood work (TONS of it) EKG, echo cardiogram and a visit to my primary physician. The game was on and I was in "do mode" to pass this screening. Not really sure why but it was a challenge to try figure out all the insurance stuff and make all the doctor appointments. But I did it. And then I had to wait for the researchers to say I passed. And I did.
Wait! Now what? This meant I was accepted into the clinical study for FA at the University of Florida.
I felt a little dose of hope. There may be treatment or even a cure for those diagnosed with FA. A little dab would do me. A dollop of hope.
I didn't stop to breath and think of the ramifications of it all until one of my best friend wrote this in her email when I told her I had no clue what I was doing but I got accepted in a clinical study for FA:
"I am so proud of you, Holly. You are brave to do this..."
It was at that moment the tears began to flow. Not because I felt courageous but that God answered my plea in my boredom. My life, lil' 'ole me, may help find a cure for this awful disease that has robbed me of so much. But one thing I know and am confident of, FA is not going to steal my joy. Just like the song, BRAVE by Nicole Nordemon, "I think I just let go".