bittersweet

I am surrounded by things that don't make sense. Life hurts. Many, many things that I can't wrap my mind around. Tears that fall and no one to catch them. Questions that are asked and shoulders are shrugged. Prayers that are made and just silence is heard. That's life. And in a bizarre way, I think that's what makes it so bittersweet.
I have been told a lot that I am going to have a lot to talk to God about when I see Jesus face to face. I just shake my head and smile, "I don't think it will matter." I won't feel the bitter. It will be sweet.
But now I live with the bittersweet of Friedreich's Ataxia. And this visit I heard some sweet news. I hope D. Z doesn't read this blog. This neurological thing is beyond me so I will attempt to describe how I understand it. FA is a progressive disease. It moves from the spine into then into the cerebellum. Although I detest the progression, I am thankful for the timing of it all. Through this study, it has been determined that Chantix is proving to be beneficial for those in a certain window. If I would have been "new" with FA, I probably wouldn't have noticed a change while taking the drug. If I had progressed with the FA, I more than likely would have been too late to feel any benefits. I am in the window! I am responding to Chantix.
This study is way beyond my intelligence to wrap my mind around but my tears are caught and the prayers are heard.
A reminder that it's all in His timing. The window. How sweet it is.

got my back.

It always takes me awhile to process the trip. It's a whirlwind. Hard to believe I actually can say I've been to Florida this week. When we landed in Tampa flight attendants and workers at the car rental would communicate politeness as they stated, "Have a great vacation." Little did they know they would see us the next day. And they did and recognized me- I'm just a tad bit noticeable.

As the study is coming to an end, Dr. Z is thinking about the future. My efforts to encourage her to say that I had to relocate to FL didn't happen. Bummer. She did say that she wants to flush the medication out of my system again at the end of March. Bummer. At this time she will begin a medication to protect my heart. I was disappointed thinking of how awful I felt when that happened before. It took me a minute to actually hear the words, "protect my heart." She was mixing me up with someone else. I pride myself that my heart has not been effected from this dumb disability. Pride. Gets me every time. It is inevitable that my heart will be effected by FA. Bummer.

Once again, I am so grateful that I am part of this study. Without Dr. Z, I wouldn't know to take the necessary steps to protect my heart. Yea, there are bummers along the way. But God has my back and He is protecting me. All of me.

Florida or bust.

On days like these that appear so bleak-grey, dark and cold, I have to remind myself that there is green grass under that white stuff.Or brown grass if it's my backyard. The winter blues have set in. It's official. I would love to transform into a bear and hibernate under my electric blanket for the winter. Wake me up when these drab, winter months are over.
Everything is more of a challenge with my disability during the winter. So tomorrow, not only am I looking forward to blue skies and a little vitamin D, I am anxious to connect with Dr. Z.
On my visits, I am encouraged. I don't feel like a fish out of water. This clinical study has provided me with purpose. I feel like I matter. I must persevere. Not just for me but for others who hopefully won't have to deal with the effects of FA.
A friend from high school sent me an email today. His words wouldn't escape my mind. He said it so well: ..."I realize too that so much of life is our reactions to the unpredictable - because almost all of life is exactly that - unpredictable."
Unpredictable.
FA is certainly that.
That is why I am making my 5th visit to the clinic tomorrow. It's where I belong. And we all want to belong. In the white stuff, green or brown grass. And did I mention the sun?

...as the pages turn

It has been 6 months since this journey began. I visited the clinic 4 times and have 3 more to make. In the beginning, everything was new and the support was overwhelming. I had no idea where this was going to take me. I still don't. And I think that's okay.
I am committed. This disability has taught me to persevere. To wait. For clear skies. I am continually challenged with my patience. Being faithful in trusting that the wait will be worth it. In this life AND eternity.
This month was no different as I prepare for my 5th clinic. After many emails back and forth with Wings of Mercy, a secured flight is not available. My oldest sister, Cherie, has done her magic again and found a commercial flight leaving out of Chicago next week. It will be a whirlwind doing the airport thing but I am committed. Just as much as the 1st visit.
I have been asking everyone if my speech sounds clearer. It is a riot seeing and hearing people's reaction. Talking is much easier for me. That's a bonus. And this past week I should have fallen at least four times. I didn't. I was able to catch myself. Major bonus.
So I keep lookin' up. For the clear skies and even the storms.

one step for mankind..

It's kicking in! This past week I noticed improvements. I forgot what it was to WANT to walk. The past couple of days, when I walked (with D on one arm and a friend on the other) I had the ability to carry on a conversation. Something that was impossible to do before this drug. Every ounce of effort and energy I had was directed toward concentration for my next step. If any of you have assisted me with walking, you are well aware of how unpredictable my gait was. If you were brave enough to help me, I pulled and yanked while creating a challenge for the "abled" bodied person to maintain balance. As I was leaving a gathering last night with a friend that has known me from kindergarten, we both marveled at my stability and the ability to talk while we walked! Cool stuff! Slight improvements! Probably not even noticeable to a stranger but gains none the less! Now if I can call the plans to fly down for my January visit a success, I'd breathe a bit easier. Still haven't heard anything from Wings of Mercy. The window for me to be at clinic is the 14th, 19th or 21st. Trusting He sees the bigger picture and the knows exact details needed to make that happen...waiting. Not only for the Florida sun but the big 'ole hug I am going to give to Dr. Z.

in His time...

It's not often that I look back on life and think of what could have been. As soon as I do that I am on what I call the slippery slope. The "what if's" consume me. I believe the lies. And I ask "why me?' The slippery slope. It's ugly. So dark, so depressing, so hopeless.
This journey has been just that. A journey. Full of questions, tears, anger. The losses were overwhelming.
When I was diagnosed with this weird thing called ataxia, I would never imagined that I would be disabled. I didn't think that my life would be done in a wheelchair. I didn't see myself as single in my 30's and no children to call my own. I certainly did not have high hopes to drive a mini van.
My dreams were a bit different. I am suppose to be living in Tennessee with my adoring husband. And after a career in teaching, I would stay home with our loving twins. A boy and a girl: Jade and Jake. My vehicle would be a JEEP to transport the kids. I'd be active in our church . Life was going to be good.
But life IS good. No, it certainly isn't what I thought it would be. But I am finally at a place when I can say that is okay. It hurts at times. Shoot, it really stings sometimes. But those are the times that I take a little ride on the slippery slope and focus on MY desires, not His.
Today the slippery slope is tempting. I am choosing to ride the tide of prayer. And acknowledge His grace, His provision, His plan.
In my plan, I never dreamt that I would obtain my masters in counseling. That was His plan. And he provided Delsie just in the right time to walk across that stage and receive my diploma. I need little reminders, like these, that He will take care of me.
Yesterday I found out that the pilot originally scheduled for my trip in January is not able to fly me to clinic. The "window" for my study at clinic is the 14th, 19th or 21st. So, I pray, trust and wait...for His plan, not mine.

staying the course...

On Thanksgiving I was able to walk on my own with Delsie. I felt great. On Christmas I was back to being severely ataxic. I felt exhaustion. I was off the pill for three weeks. We don't know if it was placebo or Chantix. We will never know.
The second half of the study began and I have been on Chantix for three weeks. It requires increasing the dosage slowly. The past couple of days I have noticed that it is easier to talk. I don't feel back to where I was with balance before going off medication. The bizarre dreams are returning. And today is the first day I feel nauseous.
Today, the start of 2010, I will remind myself of our favorite saying a friend started, SLOW AND STEADY WINS THE RACE.
In everything. Ataxia, relationships...and in the new year!