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...