Happy Birthday, Delsie

Pretty Girl. D-Dog. Toots. Tootie. Delsiemeister.

9 years ago this beautiful, black lab came into my life. And changed it. For the better. Forever. I wouldn't even be involved in this study if it weren't for her. She is my Christ with fur on.

Today is her 11th birthday.

Every night when she hops onto her toddler bed for the night, I sing to her. "You are My Sunshine". And she is. Happy Birthday, Delsie.

I love you further than to the moon and back.

My best friend, Tiffany, wrote this essay for a contest describing her excellence as a service dog. It honors Delsie so well and worth sharing:

Blue skies. It's what I think of when I see her face. I have this photo of her standing on the Santa Monica Pier looking out into the blue horizon (or at least looking at a seagull perched on a pole- what do I know?) Her black shiny fur glistening in the sun, her long pink tongue peeking through a strong set of white canine teeth. She is panting from the heat but is utterly content with her mom by her side. Her mom is holding onto the leather harness, that is strapped to her lean and muscular back, steadying herself for the picture. Funny. They are both smiling. Who says a dog can't smile? And who would have thought a dog, this dog, had the power to heal, to change a life? This life. Her life.
The day Delsie came into Holly's life she rolled back the dark clouds of Friedrich's Ataxia. Friedrich's Ataxia is a degenerative disease that disables fluidity of movement, balance and muscle control. The ability to walk becomes a major undertaking. Simple daily routines require effort beyond belief. But not beyond Delsie's belief nor beyond her scope of support.

Delsie is trained to provide support and balance for Holly. The excellence she displays in patience and loyalty alone surpasses anything a human could provide. She is trained in many daily life skills to help Holly face each day with courage and independence; opening and closing doors, pushing elevator buttons, retrieving household items like the phone, a dropped pen or cup, a book across the room and the list goes on. She even knows how to pull clothes out of the dryer and how to go stealth in restaurants and movie theaters (you should see the way people jump when she comes out from under a table or when she makes her way out of a theater isle!) She is trained to help Holly stand if she happens to fall. And one of her specialties is knowing how to lick away tears of frustration and sadness after bad days and long nights. For the last eight years Delsie has served faithfully with nothing but love and devotion. While all these things are amazing accomplishments for a canine partner, I have to confess, it's the deeper level of her support that blows me away.
We enter this life with hopes and dreams. When we are young the world and all it's glory is at our fingertips. We anxiously plunge toward independence never once imagining the very freedom we live and breath can be taken away in just a moment, a dark moment, in time. But it's amazing how in Holly's life what was taken has been handed back with the help of an amazing dog. This amazing dog. Delsie. The hope and independence, the courage and the comfort, the companionship and peace that comes from this four legged friend makes Holly's independent life beautifully possible.
Blue skies. That's what I think of... when I see her face.

committed.

The dreams are back. I'm on the real deal. I finally made it down to clinic for my December visit and it was well worth the wait. My sister, Lo, and her oldest son joined me this time. The jet that took us through Wings of Mercy was unbelievable.
I stood on my own again for over a minute and walked down the hallway. When I crossed over the finish line I asked for my time. "Holly, you walked and now you're concerned with how long it took you?!" Maintain perspective and dream big! Just gotta figure out the balance with the two.
We joined a few doctors on the elevator to the clinic. One of the doctors said, "you're back already?" It took me by surprise as I didn't recognize him. "Let me guess" I replied sheepishly, "you were in the hallway when I bawled?"
"We all did", he said.
And that is one of the many reasons I am so glad I am part of this study.
I'm not a number. I'm a person. Someone who has FA. Hoping to find a cure.
They are committed to me and a cure.
I am on Chantix now. For the next four months.

almost out of letters

Still planning. Flights postponed. Schedules rearranged. Again. I'm having an "I can't do this anymore" moment. Tears are flowing and my patience is running thin. I copied part of a devotional down the other day from James McDonald. When I read it, the words practically jumped off the page...

"God did not cause the horrible events in your life, but you need to embrace the fact that He allowed them. God could not make a world in which we are free and at the same time guarantee that everyone would choose Him. So the world is broken and bad things happen. But God promises that He will be with those who love Him. He will bring us through the fire, and we will come forth as gold."
Don't misunderstand me. Running into hiccups with flights down to Florida for this clinic would not be classified as horrible. I get that. Hopefully I can keep perspective. But, at times such as these, I feel like having FA is horrible. And I am sick of it. So weary.

I am purging today. My selfishness. It's selfish, I know. The "why me?!" moment. This, too, shall pass. I know that. Even if I have to hitch hike.

plan ?...

I think I am working with plan "L" now. Plan B was a week ago. But God is still working. Disappointments and all. I am suppose to be on my way to clinic. To begin the drug of Chantix. Instead, I am hunkering down in the blizzard of 2009. The pilot has kindly offered to fly me Sunday and as usual USF, was more than accommodating to see me Monday.
"I'm Leaving on a Jet Plane"...soon. Just not today.
It's a snow day.

falls.

I am not sure why I use to take photos after a fall. I have a lot of them. I fell quite a bit. There was a time that the staff at the ER knew me by name and loved it when Delsie would visit. There were a lot of ER visits. Staples, X-rays, broken bones, bruising...it comes with the territory. It accompanies the diagnosis of FA. I hate it. But at the same time, I marvel at the resilience of my body. I always seem to bounce back. My body does at least. Kind of. The progression of this disability has been so gradual. The subtle loss of things is tormenting.
I had forgotten what it feels like to feel stable. Stable enough to get out of bed without falling. The balance to transfer in the bathroom without crashing on the bathroom tile. The ability to not have to think about the placement of my feet or the formation of words are foreign to me. Life was exhausting. I felt like I would be a "shut-in" in my 30's.
How quickly we adapt to things. After I fell in the bathroom yesterday, I was acutely aware of how my body was improving, slowly yet gradual. The war wound from yesterdays fall was minimal. It won't be noticed by those who pass. But I cried. I always do after a fall. Except the wailing was different. Normally my screams are motivated by utter despair, anger and a feeling of hopelessness. Followed by a towel to wipe off the blood or ice pack to soothe the broken bones. The fall yesterday came with screams and plenty of tears. But this time, my crying was filled with hope. And the only desperation I felt was the urgency to get back on the drug. There is hope. I can feel it. Physically and emotionally.

never fails.

My sister is excellent at finding the deals when it comes to cheap flights. After receiving my email plea for help, she came to the rescue. As well as the flexibility of my other sister who is scheduled to join me this trip. And the support of my parents forking over their credit card for a "loan" for a commercial flight. It is obvious that God has opened to many doors for me to be involved in this study-I'm not quitting. So through the support of my family and friends ONCE AGAIN and a little more planning, plan B has formulated.
In the past I would have lost a little sleep over this- who am I kidding?- I normally would have been up all night but my fight to sleep was credited to Phoebe, my kitten and not the lack of transportation to clinic next week. Instead, I had a calmness about it and was confident God would provide.
And He did.
He always does.
Just like He did when my 5 year old niece started asking God that her Aunt Holly could walk again.
I sent my family an elated email after my third trip to the clinic in which I walked 50 feet and stood on my own for over a minute. I attempted to describe the feeling and was in awe of the miracle that took place. My sister read the email out loud as my niece listened.
Without hesitation my niece replied, "Our prayers work, mom."
They sure are.
They always do.
Even in plan "B".

gulp.

Yesterday was my first day to not take any pills. For two weeks. Until I return for clinic on the 10th of December. Until I received this email from Wings of Mercy today:

Dear Holly,

I may not be able to fill Dec or Jan. We had to suspend fuel reimbursement until the FAA gives us our ruling, which looks really good, in 60 or so days, but until then it’s a no for giving pilots that $ back.I wanted to give you a heads up in case you need to buy plane tickets. This time of year can be so costly.

Guess it's plan "B".
I just wish I knew what that was...

Memorizing Romans 15:13 this week- "May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit."

Go figure.

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...

A-MA-ZING

I sound like a broken record. If Delsie could talk I am sure she would tell me to find a new word to describe my 2nd visit to the clinic. I can't. It was amazing.
This journey is amazing.
I am so humbled to be a part of it.
Tonight I was stopped downtown by people who had read the article in the paper.
"How is everything going?"
"Amazing!", I replied.
I think I saw Delsie roll her eyes.
As we finished the conversation, we said our good-byes and my friend said, "The Lord be with you."
"Oh, He is."
His hand is all over this story.
And it is amazing.

bitter or better?

I am not sure why I doubt. I struggle with controlling things. I tend to expect that life will turn out the way I want. You would think I would catch on. I live each day with this thing called FA that is rather demanding. And at times, very annoying. I don't have control over the progression over this disease. And I am ashamed to admit that often, I feel defeated. But what I do have control over is how I will react to my circumstances. A good friend of mine challenged me when the diagnosis was new. "Holly, you have a choice. You can choose to be bitter or you can choose to be better."
I attempt to choose the later.
Every day I am reminded of this choice. God gives me little glimpses of who He is and how He continually has my back. This Friday was no exception.
I meet with a few of women every other Friday for a writing group. One of these woman had just joined. We don't know each other that well. My trip to the clinic tomorrow must have been mentioned the last time we met. When I arrived Friday she handed me a gift bag, "This is a little something for your trip."
That, in and of itself, was so thoughtful. I was extremely touched. But when I opened the bag when I arrived home, I was brought to tears.
Each and every gift in the bag was filled with details by someone who really knew me. Right down to my favorite Kit Kat candy bars!
She also included a note that included Hebrews 11:8. "By faith Abraham, when called to go to a place he would later receive as his inheritance, obeyed and went, even though he did not know where he was going."
Abraham obeyed and went.

And by faith, I leave for my second visit to the clinic tomorrow.
Day #33 and God reminds me that someday it will be better. I may or may not witness it here but I am okay because He'll provide the Kit Kats. I just need to obey and go.

...and away I go...

FA and football.

I often wonder how my nephews and nieces process everything with their Aunt Holly and this thing that makes me "do" life with a dog and wheelchair.

They get it.
Life.
They so get it.

My sisters and brother in laws are raising incredible kids.
I think FA is a breeze when I consider the responsibility of raising children in this world.

I picked their brain after a Sunday lunch ( 4 of them weren't there) and here is a part of our conversation.

Sorry to interrupt the football game, Ken.

Day #27 and no major side effects. Super tired and FREEZING...a result of Sunday afternoon and living in Michigan. I am looking forward to my clinic visit next week-maybe I'll thaw out.

this, too, shall pass

Don't worry. This is not a plug for the H1N1 vaccine. Nor is it my intention to make you squeamish at the sight of needle. Frankly, I am quite fond of needles. Needles that carry an injection of B12.
It all began a year ago when my friend and I were struggling with the afternoon lull. About 3:00 during the day, I wanted desperately to crawl under my desk at work and take a little siesta with Delsie on her dog bed. She asked me if I had ever heard of a B12 patch. Thus, began a round of blood work to determine if I was in need of such a vitamin in my body. The tests results showed that I was extremely low in B12 so my doctor wanted me to start injections of it. And now, I would drink the stuff if I could. I had no idea how bad I felt before I started this treatment. It is to the point that I recognize it is soon time for another injection. No more afternoon lulls and the sound of Delsie snoring under my desk makes me smile with joy and not green with envy.
So, after my scare with Dr. Z last week and my overall sluggish feeling, I realized I was past due in my dose of B12. The next day a friend gave me the shot and within an hour she noticed that I perked right up. Dr. Z phoned me and during our conversation noticed the improvement it made in my speech alone. Phew.
I am still on the course. On Tuesday, I have increased to 2 pills in the morning and 2 pills at night. I have reached the maximum dose and I am on day #22. Dr. Z told me that day 20 the side effects may kick in.
I am not going to lie, I have twinges of doubt and tugs with fear. But I want to do this. I need to do this. For those living with FA or those not yet diagnosed. We are all in this thing together. This thing called life. And if in this life, I witness a treatment or even a cure for this annoying disease than my moments of tears and my bouts with anger will all be worth it.
Tonight, I cling to His promise...
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes on not what is seen but what is unseen. For what is seen is temporary and what is unseen is eternal." 2 Corinthians 4:16-18
Day 22 and I am still living with the effects of FA.
But it's only temporary.

digression...

Friday night around the dinner table with some of my friends, the discussion began with expressing our love for PINK and her song, "SO WHAT".
Somehow it progressed into this...or should I say digressed?.

For lovers of PINK, watch at your own risk. I do not do her justice but my friends re-write of the lyrics are brilliant. This is a "cut" version so I posted the lyrics below.
I love my friends and their creativity.

This video is both mortifying and hilarious - kind of like living life with FA.



Na na na na na na na
Na na na na na na

Na na na na na na na
Na na na na na na

She's got this sucky thing
called Friedreich's Ataxia

she's in a clinical study
down in Florida

At first when she took the pill
she had some weird dreams at night

Dr. Z's the bomb 'cause
she's helping her win the fight

(2x) Na na na na na na na
she's gonna win the fight

so what
she's in a wheelchair
she'll run you over
and she's got big hair

Guess what, she's having more fun
Although she can't run
she's gonna show you for sure
there's a cure, don't ignore,
it takes time, so...

so what she's in a wheelchair
she'll run you over
and she's got big hair.

Delsie's her best companion
she takes her everywhere
God is her main support
without him she wouldn't dare

She flies on Wings of Mercy
she gets to take a friend
after 8 months of tests
she'll make it to the end

Na na na na na na na
she's gonna win the fight

God's always there
he always cares
he gave it all
though it's not fair

He gave her life
She'll give her all
He's always there
she'll never fall.

FEAR

I hate bad "Ataxia" days. They are difficult to explain and even endure. I often say "this, too, shall pass" and one day it will. Maybe it won't be until the day I look Jesus in the face. Most of the time I am okay with that. But tonight, Day #16, is a different story.
I am scared for the first time since this whole study began.
This week, Tuesday, I increased the pills to 15mg, only after I fell while getting ready for work. If it weren't for Delsie and my stubbornness I would have been the perfect candidate for the commercial- "Help, I've fallen and I can't get up!" It was down hill from there-my spoon full of yogurt had a life of it's own and became next to impossible to bring it to my mouth. My co-worker and I laughed as she witnessed the whole thing. I knew it was a bad ataxia day. Later on that day, enjoying a Beach Bum ice cream from Captain Sundae, the Ataxia struck again and my dessert landed on my lap. A couple of hours later we discovered hot fudge dripping down my office walls. (Today I spotted my nephews face to be covered with a left-over blob of chocolate I missed in a family photo I have framed on my desk) It was a bad Ataxia day.
I have lived with FA long enough now to relish the time of night when I can crawl in bed and tell myself, tomorrow will be a new day. I lived through another day with FA.
On Wednesday I felt nauseous all day. Not much of an appetite. This is not unusual for me. A week from now I could consume more food at meal time than the food my three brother-in-laws eat, put together!
So when I answered the investigators questions today, it sent a little warning flag to Dr. Z. She called me tonight and my fear kicked in. Not because of her but because the words, "long-term effects" and "awful side effects" were thrown around. The severity of this clinical study became a reality to me. Two of the seven patients in the study responded great on the drug and noticed improvements. Three people had the adverse effect and were told to stop the drug. The "damage" is irreversible. I, however, am on the fence as the bad Ataxia days aren't necessarily a cause of the drug- I could be on the sugar pill for Pete's sake! (who's Pete, anyway?)By the end of my conversation with Dr. Z it was decided I would stay on this course until we determine if it's a cycle thing and has nothing to do with this drug. If the bad Ataxia days far outweigh the good ones then we will discontinue the drug. At this point, it is a mystery why some patients respond well and others get worse.
It's not a question of why Dr. Z is who she is, wired the way God designed her. She knows her stuff and I have complete trust in her decisions.
Tonight, my selfishness is in the way and I am not trusting the process. But as Beth Moore shared in my Bible Study this week, God doesn't take you "from" without a "to"...
So, "from" a person with a degenerative disorder called FA "to" a person with a little hope of a treatment or cure for FA, I won't give up.
My feelings scream for me to quit but it's my faith that tells me otherwise.
Day #20 is when the drug (if I am taking it) should kick in. Let's hope I am one who responds well to it.
I am anxious to call it a night and remind myself of the acronym False Evidence Appearing Real
has no place in my life.
Tomorrow is a new day.

puff the magic dragon

Day #14 of taking 10 Mg of placebo or Chantix and nothing feels different. The investigators called again today and by the time I finished answering the list of questions, they ask every phone call, I question if I am really depressed. I'm not. No worries. But answering tons of questions asked in different ways, whether or not you want to harm yourself, makes you second guess your sanity or even fret if this will soon present itself.
So the story my co-worker shared with me about his 10 year old son and this study gave me a moment of comic relief...
The article in the Holland Sentinel is cut out and posted on the bulletin board in the office that his father and I work. This week end his dad was doing some work in his office while his son was waiting for him. As he was waiting he read the article about me and the clinical study.
He was a bit perplexed and walked into his dad's office and said,
"Dad, I didn't know Miss Holly was a smoker."

From the mouths of babes but a mind of an adult. A 10 year old comprehending the word "cessation".
I think he was more baffled that I took smoke breaks than the potential of curing FA.

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".

and it begins...

I was told that being bored was a sin. I was a HUGE sinner. I felt like I had no goal, no purpose...I was stagnant and felt like I was taking up space.
I started praying. I didn't have a clue what I was praying for and or even knew what I desired. I just felt things had to be different. I was growing weary of the "ho-hum" of life.
That all changed on the 1st of July when my sister, Laurie, sent this email that was forwarded to me that read, "Howard, did you see this?"
Four words that would answer my prayers pleading for direction. Things were (are) about to change and hopefully for the better. That is my hope. Not only for me but for those diagnosed with Friedreich's Ataxia in the future.
And yea, my sister's call me Howard.
Don't ask.