Monday, February 17, 2014

A Week of Living, Laughing, Loving, and Losing

February 17, 2014

Seven days does not seem like that long of a time. It is just a week, right? Well, as I reflect on this past week it is clear to me that a lot can help in this short amount of time.

For me, the adventure started last Wednesday. I was awoken early Wednesday morning by Ann who informed me that our furnace was not working. Happy, Happy, Joy, Joy!!!! After wiping the sleep from my eyes and shaking the cobwebs from my head I retreated to the basement to solve this mystery. As I banged and clanged on my furnace I had a vision of a scene from a movie called "A Christmas Story." There I was fighting a losing battle against a malfunctioning furnace just like the father in the movie.

In utter defeat, I ascended from the depths of the basement in search of the repairman's phone number. Meanwhile, Ann was busy setting up electric heaters and sending out an SOS on social media....a move which would be so valuable later in the day.

About 2 hours of sitting wrapped up in my Superman Snuggie had passed when the phone rang. It was a friend who saw Ann's plea for help and wanted to offer some help. Then shortly after I hung up the phone it rang again with another person offering assistance. Between the two we were able to solve the problem. It seems that the pipe that brings the air in from outside became clogged with ice. Therefore, the furnace was not getting fresh air and shut itself down. To remedy the problem I used a wire coat hanger to remove the ice from the pipe, restarted the furnace, and heat began flowing through the house again.

And that my friends brings us to about noon on Wednesday. I still needed to drive about 25 miles to the doctor's office to have an x-ray of my back taken, take Taylor to basketball practice, and then head to church. Let's just say that by 9 p.m. I was pooped and I had to get up early Thursday to head back to the doctor's office to get the results of my x-ray.

When Thursday morning came all I can say is "SNOOZE BUTTON." I was a little slow moving, but was able to get up and once again drive myself the 25 or so miles to the doctor. The trip was well worth it. My back is healing nicely and I no longer need to wear my brace all the time. Now, the hard part about Thursday was that Ann and I went to the funeral home to pay our respects to my great uncle who passed away earlier in the week. Rest in peace John.

After we left the funeral home I was feeling a little run down. My throat was scratchy and my ears were beginning to itch. I decided that I would skip Taylor's basketball practice this night and try to rest up because tournaments were Friday.

Friday finally arrived. Along with the snow that was falling on Valentine's Day, Friday brought another trip to the doctor, a quick Valentine's dinner, and Taylor's first game of her basketball tournament.

Saturday brought more of the same. Busy...Busy...Busy. Taylor and her team ended up playing two games on Saturday. In between her games we went to a benefit for a 2 year old who was recently diagnosed with  neuroblastoma. It was amazing to see such an out pouring of love and support for this little boy and his family. Saturday also brought about another loss of a loved one. One of Taylor's basketball coaches lost his father. So it was a very emotional day. Please keep Taylor's coach and his family in your prayers this week as they go through a very difficult time.

Finally Sunday was upon us and guess what....More basketball was on the slate for the day. At this point I think that between fighting off a cold and not getting enough rest my body was running on pure adrenaline. However, I am proud that I was able to accomplish all of these things this week. I even made it to church Sunday night.

It was this week last year that I was officially approved to undergo my stem cell transplant. And there is no way I would have been able to take on a week like this past week. Last year I was in a wheelchair and dependent upon others for assistance in so many areas of my life. Now, I have regained many of my freedoms that my CIDP has taken from me. Even though I am battling a cold, I am thankful that I can drive myself to the doctor. I can drive myself to the pharmacy. I can not stress this enough, but it is truly the small things I am so thankful for.

So, another crazy week of recovery has been filled with laughter, smiles, and tears. 

Monday, February 10, 2014

Live Life

February 10, 2014:

This week I wanted to dedicate a poem to all those individuals who are fighting the fight of life. I also would like to send out a special dedication to all those individuals in Chicago and around the world awaiting to undergo their stem cell transplants to rid their bodies of a variety of illnesses.

 Live Life
© Livelovelaugh
Life is crazy,
and totally unpredictable...
It's going to push you over,
kick you while you're down
and hit you when you try to get back up.
Not everything can beat you.
Things are going to change you,
But you get to choose which ones you let change you.
Listen to your heart,
Follow your dreams,
And let no one tell you what you're capable of.
Push the limits,
Bend the rules,
And enjoy every minute of it.
Laugh at everything,
Live for as long as you can.
Love all,
But trust none.
Believe in yourself,
And never lose faith in others
Settle for nothing but only the best,
And give 110% in everything you do.
Take risks,
Live on the edge,
Yet stay safe,
And cherish every moment of it.
Life is a gift,
Appreciate all the rewards,
And jump on every opportunity.
Not everyone's going to love you
But who needs them anyways.
Challenge everything,
And fight for what you believe.
Back down to nothing,
But give in to the little things in life,
After all, that is what makes you.
Forget the unnecessary,
But remember everything,
Bring it with you everywhere you go.
Learn something new,
And appreciate criticism.
Hate nothing,
But dislike what you want.
Never forget where you came from,
And always remember where you are going.
Live Life to its fullest,
And have a reason for everything,
Even if it's totally insane.
Find Your purpose in life,
and Live it

Monday, February 3, 2014


February 3, 2014

I woke up this morning not feeling too well. I think I have been battling a bug for the past couple of days. The good news is that I am not running a fever. However, my stomach has been upset and I am feeling fatigued. It is the most annoying kind of fatigue. The one where all you want to do is lounge around, but can't sleep. I sure hope this passes and does not turn into the stomach bug that seems to be going around. Think I will be laying low for a few days.

Sitting here this morning and looking out on the fresh fallen snow, my mind began to wander. I began to think about how everyone's recovery from the HSCT is like snowflakes. Just like no two snowflakes are alike; no two HSCT recoveries are the same.

These difference can bring about uncertainty for many of us during our recovery. Is this as good as it gets? Is what I am experiencing "normal"?  Why can I not do the things that others are doing? Shouldn't my results be the same as others who have had the transplant?

What is important to remember is that the HSCT stops your body from attacking itself. It essentially halts the attacks and allows the body to heal itself. I believe that is why the initial recovery for many of us varies so greatly. Our recovery seems to be dependent upon the amount of damage our body has already endured.

I need to remind myself of these things from time to time. That my recovery is my own. I cannot try to compare and compete with others. This is not a race. This is a marathon. The long term success rates of the HSCT speak for themselves.

After my transplant, I had a few goals. The first goal was to be walking with a cane. Check. The second goal was to be able to safely care for myself throughout the day. Check. The final goal was to be driving. Check.

I have reached all of these goals and have began setting new ones. The problem is that I forgot to enjoy my successes of walking, driving, and caring for myself. I am sure that even the Seattle Seahawks are taking time to enjoy their victory. My mindset is to continually push forward. But right now I need to step back and be thankful for how far I have come. Sometimes I forget to be thankful. Sometimes I get frustrated because of what I am still unable to do.

Over the next 6 months, I am going to continue to focus on the little things. The things that I so desperately desired to do only a short time ago. I am going to have to prepare my body for the next phase of life.

Remember, we are all like snowflakes. No two of us are alike and no two of us will respond in the exact same manner. Set your goals. Push toward them. But, don't forget to enjoy them.