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.