the "laugh" wall.

I'm dying. I know, we all are, sooner or later but today, I am feeling the urgency of the "sooner." That's the part of Friedreich's Ataxia that I don't think about. Or simply put, I don't allow myself to think about. But the reality is, this diagnosis is suppose to shorten my life. Research states that my heart may give out or I'll develop diabetes that will eventually wear me out. The studies of FA have shown that my vision and my hearing will deteriorate. I'm dying. Plain and simple. And I feel the urgency of this dumb disease that has progressed thus far in my life. I have FA and I'm dying.
Perhaps this thought process was triggered by the Hearst parked in the parking lot of my place of employment this morning. The back end was open and curiosity got the best of me. I quickly perused the parking lot to see if anyone would notice me making my way to sneak a better peak. It was empty. But my mind immediately transported me to thoughts of my own coffin being hoisted into the open "station wagon." I think it was all down hill from there. By the time I reached my office and turned on the computer, my funeral was planned and I envisioned the songs that would be sung and friends who would attend. Morbid, I know. But true.
Reality is I have FA and I'm dying.
It has been studied and approved that a specific supplement would be highly effective in treating the symptoms that come with FA. I have known this for several months but was instructed not to take it until the study with Chantix was over. I have left no stone unturned as I made attempts to find the cheapest way to afford this supplement. A med that will not only protect my heart but has proved to improve speech and coordination of those with FA. FA that is killing me.
My efforts feel in vain as the urgency of this disease seeped into every fiber of my being today. I bit the bullet and ordered 6 bottles of this supplement that will only last me 6 weeks for $200. As I clicked the mouse to submit the order for a vitamin that may help me talk better or aid my ticker to tick, I realized how irritating FA really is. I didn't have the option to buy designer jeans with that money. A choice that has been taken from me yet again.
I have no control over FA. But what I can control is what I am going to do to fight against the death grip it may have on me and so many others with this diagnosis. It's not going to suffocate me. I won't let it. I know it's big. So much bigger than me but so is God. FA is nothing to Him. I have to believe that. It helps the urgency of days like today. Knowing full well that I am dying.
We all are.
FA or not.
Last night, a friend helped me finish hanging photos on my "laugh" wall. As I type this, the faces of friends and family are reminding me it's going to be okay. Death is a reality and a treatment or cure for FA will soon be one, too. And I'll spend time making a point to laugh along the way.
Enjoying my life in death.

Another...

Another clinical study. Another whirlwind experience. Thursday, my friend and I embarked on a road trip to Ohio State University in Columbus, Ohio. A six hour trip that turned into eleven hours as the Goodwills on the way screamed our names.
I knew what was going to be involved in the test. I was uncertain how I would react. Simply said, I am glad that I have a year to forget about it. OSU was impressive and those involved on this particular study were great. This is a clinical study that examine the heart of those effected with Freidriech's Ataxia. And that would be me. Ignorance is sometimes bliss. And that statement applies in this situation.
A team of researchers/nurses/doctors and technicians "worked" on me for 3 hours. I began the test by adorning the infamous hospital gown, performed the studies neurological tests, met the cardiologists and poked for two IV's that came out of the same arm. I was wheeled back to the MRI room and another team introduced themselves and quickly became captivated with Delsie.
After I was completely strapped down on a narrow stretcher, I panicked as my nose started to itch. The table slowly moved me in a tube up to my ankles. If I just lifted my head from the table, my nose problem would be solved as it would be squished. I then panicked feeling that I had to sneeze. And then my shoulder started to itch. Another hour in this MRI- I thought I would have to squeeze the emergency ball they placed in my hand to pull me out. The contraption across my chest didn't help along with the instructions to hold my breath and then relax. RELAX?!
It was at that point that I started envisioning myself laying in an open meadow. This was a mental challenge more than anything else. A nurse came out to holler down the tube that medicine was going to flow to make my heart race. For four minutes. In a tight tube. I started to pray for my friend who is waiting for a heart transplant. This was a cinch compared to what he is going through.
I couldn't have been more relieved when I heard the nurse tell me they were done. Once again, Delsie was a trooper.
And more Goodwills on the way home.
So, this visit is done for this year. I will endure the same thing once a year for the next five years. Over that time, my heart will be studied and compared to other FA patients. And I wait. And hope. That some day there will be a cure.

Memories

Before this journey becomes a thing of the past, I scroll through the photos and remember. Or laugh. And in this video, I am doing just that. The plane is very "bumpy" because we are preparing for the flight home from FL to MI for my last visit to USF last month.
I need to remind you that this is one of my sisters who is petrified of flying in a small plane. When we were on the tarmac anticipating the take off, there was a flapping sound on the exterior of the plane that freaked her out. FREAKED OUT. She wanted me to tap the pilot and draw his attention to the noise. (that is what she is saying, "get Matt"! Followed by her pointing.) I was laughing so hard, I almost wet my pants. Her eyes and labor breathing say it all.
And watching this video, makes me laugh.
Here's to memories.
Last week was my last official phone call with USF. In the conversation, I reported that I felt like I was still doing well. I was thrilled to say that I haven't fallen since being on Chantix. Jokingly, I said that since I said that, I would fall.
And I did.
The next morning getting out of bed.
Nice.
My focus now is getting on a supplement that will protect my heart.
And I continue to be hopeful that this fight to find a cure for FA is not over.
There is always hope.
Even with a flapping noise on a tarmac.

a little set back.

I'm still here. I'm not giving up. It's not done. This fight. This stupid FA. I know I have this thing. These past two weeks don't let me forget it, either. What would be a minor "hiccup" for someone becomes something major for a person with FA. And unfortunately, that's me.
I have had Delsie (my service dog) for 9 years and she has never been treated to an ambulance ride. That all changed two weeks ago, Monday. Without boring you with the unnecessary details; we were in and out of the hospital a couple of times as they discovered a cyst on my ovary that apparently became twisted. People. I pride myself on my high tolerance to pain but this was like no other. Delsie was incredible, as usual, and impressed the paramedics and hospital staff with her professionalism. I, on the other hand, was a miserable patient. This photo was snapped without my knowledge from my mother after I was completely comatose from the pain meds...nice. And she becomes my "mother" instead of the enduring name of "mom" in a time such as this- causing a slight chuckle when I become aware of a flash in the ER room.
Thanks to a "mom", who never left my side, I have returned to society. Although my trips to FL and USF are over for now. I am hopeful that this journey to find a treatment or cure for FA is only just beginning.
If you have been following, you may remember I have agreed to a study for FA patients on their heart at Ohio State University. That test is next week. Time flies and life continues and so does the hope for finding a cure for FA.
I am completely off Chantix for two months now. I am having more trouble talking again. And I cried me a river yesterday. Oh wait, can't blame that on the Chantix just my pity party that happens every now and then...