Tuesday, December 31, 2013

Year In Review

December 31, 2013

Tonight when the clock strikes midnight 2013 will be no more. This is the time of the year where most people reflect on the year that was and begin to prepare for the year that will be. I am no different than the rest. As I replay 2013 in my mind, it is obvious that this was one of the most special years of my life. Here are some of the highlights:

January - Ann and I flew to Chicago for our initial evaluation with Dr. Burt. What an experience that was!!! If you have not read my blog on the "O'Hare Experience" please do so.

February - My insurance company approved my stem cell transplant. O' Happy Day!!!

March - This was not a good month for me. I was admitted into the Ohio State University Medical Center for 10 days while I was receiving plasmapheresis. Let's just say I was not a very good patient. I just wanted to be in Chicago, but financially Ann and I needed to wait until the summer. Oh, I also cannot forget that my youngest daughter, Torin, turned 7. She is growing up so fast.

April & May - I simply remember these months being 2 of the longest months of my life. My body was deteriorating and I was counting down the days to leave for Chicago.

June - This was truly the beginning because June was the month my stem cells were harvested. In addition, Ann, Taylor, Torin, and myself spent practically the entire month together in a cramped efficiency apartment on the shores of Lake Michigan. In between doctor visits we ventured all over the city trying to make memories that would last a life time. Ann and I wanted to share this time with our daughters because we really had no idea what to expect after the stem cell transplant.

July - July 16, 2013 was my stem cell transplant. July 9th, Ann had to push me in my wheelchair into the hospital and by the end of July I was using a walker or a cane to get around. Simply amazing.

August - Ann, Mom, and I returned from Chicago. It was so great to be home surrounded by my friends and family.

September, October, and November - These were the months that I tried to focus I my recovery. I remember I took a pretty nasty fall and sprained my foot. It should also be noted that in October my oldest daughter, Taylor, turned 10 years old. Those 3 months just flew by.

December - I started getting antsy this month. I had been feeling good for over a month and needed to test myself. I decided I would try to go back to work. Well, let's just say it did not go as planned and I am no longer employed. You win some and you lose some. My final parting shot to 2013 was my blood drive which we received 51 units of blood.

2013 will always be one of the greatest years of my life. I want to thank all of you who have walked with me on this journey. It is only fitting to leave you with one of my favorite Bible verses as we ring in the new year: "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29:11).

Sunday, December 22, 2013

The Mind Is Willing, But The Body Is Not

December 22, 2013

Last week my youngest daughter made her blogging debut with "My dad is working again." This week I am writing to inform you that Torin's dad is no longer working. The demands of working full time are more than my body is ready to handle. Over the past few days my feet had begun swelling and becoming very painful. Last night I was in so much pain that I could not stand for the sheets to be touching my feet. I am pretty sure I bit off more than I could chew. I also was reminded by my dear friend Benoy that I need to follow my advice of  "listening to my body." Don't you love it when your words of wisdom come back and slap you in the face?

Tonight as I update my progress, I cannot help but be a little disappointed. I deeply wanted to return to the work force and hit the ground running. I have a desire to contribute financially to my family. This is the example that my father has instilled in me. He is a hard working man who goes years on end without missing a day of work. Throughout my life I have watched him repeatedly battle through blizzards, floods, and illness to punch his time card at the factory. I watched him return home in the summers drenched in sweat because of his factory's excessive heat. He did all this to ensure that my sister and I were well taken care of. It is from my father that I have  drive to work.

I know that timing is everything. I know I need to be patient because I am still fairly early in my recovery. Even though I know these things, it stills does not take away my desire to provide for my family.

For much of my marriage, Ann has had to carry a heavy load. She has never complained. I thank God daily that I have been blessed with such a wonderful wife. There were many times in our relationship where she could have easily walked away and I would have not blamed her in the slightest.  She is my soul-mate. Watching her work so hard to provide for our family humbles me. I desperately want to ease some of her burdens. By not being able to work and help Ann, I feel as though I failed.

Now, failure is a funny thing. Failure is not something I am good at accepting. When someone says, "Failure is not an option." I tend to agree. The reason I do not accept failure is because failure can only truly occur when you give up, throw in the towel, and stop trying. That is not the case for me. Yes, I lost the first round of a fifteen round fight. Failing does not make me a failure. Failure makes me human. How can we ever know what we can accomplish if we never push ourselves to failure? Failure is what creates greatness. Many of the comforts we have today were created by the failures of another.

To illustrate my point I would like to take a look at Christopher Reeve.
superman, dana reeve, christopher reeveThe man who played Superman becoming a quadriplegic was more than ironic - it was tragic. He never learned to be happy about his situation - who could? But, he did learn to live with it.

“In the morning, I need twenty minutes to cry. To wake up and make that shift, you know, and to just say, 'This really sucks,' to really allow yourself the feeling of loss. It still needs to be acknowledged.” - Christopher Reeve

Then, he'd say, "And now...forward!"

He had to take a moment everyday to acknowledge where he was, what the reality of the situation was. But, he didn't allow that to stop him. He traveled widely doing public speaking on behalf of people with spinal injuries, tirelessly raised money for his own and other foundations, and even became a movie director. He took what he had and tried to help others in the best way he could.

Solomon told us, "A righteous man may fall seven times, and rise up again" (Proverbs 24:16). And Psalms 145:14 reminds us, "The Lord upholdeth all that fall, and raiseth up all those that be bowed down" (NKJ). Failures happen. They cannot be avoided. It is how we let our failures and setbacks affect us that truly matters.

In conclusion, I want to wish everyone a Merry Christmas. Thank you all so much for following my journey and providing so much love and support.  

Monday, December 16, 2013

My dad is working again

My dad is healthy and is working again!He is a car salesman in Athens.He hasn't sold a car yet but he wants to.He has been working without his cane!He is walking alot faster now.I hope he doesn't over do it.He got yelled at once but that didn't stop him.He leaves about the time we do.I don't think that he would be able to work and do these things if he didn't have the stem cell transplant.I bet he will be alot better by Christmas.Merry Christmas to all!


Monday, December 9, 2013

Miracles Do Happen

December 9, 2013

This past week I watched a video of a woman walking. I know this may sound boring and many of you reading this are probably thinking, "OK...I do that everyday. So what?" The beauty of this video is that the woman had been wheelchair bound for 5 years. She was completely paralyzed for several months in 2009. Now, 2 months post stem cell transplant she is up and walking with assistant. What a miracle for her and her family!

For me, I am nearing 5 months post transplant and I am happy to report that I am no longer using a cane. I am up walking on my own, climbing stairs, and driving. This past weekend I put all three of my new skills to the test by attending a high school football state championship game.

This was not an ordinary high school football game. This was a game in which a nearby school's football team was playing. It was a school that I had coached against, and lost to many times. I had been a distant observer of this group of young men since many of them were in 7th grade. With all the excitement surrounding our communities Ann, Taylor, and I loaded up the van and made the 2 hour journey north to the site of the game. Tori decided that she is not enough of a football fan to sit out in the freezing cold. So she opted for the warm comforts of Grandma's house.

When we finally arrived at the game all the skills I had alluded to earlier were quickly put to the test. I would drive our vehicle from the hotel to the stadium. After we parked we would trek what seemed like 42 and a half miles. Then once we entered the stadium there was the daunting task of traversing the bleachers to find our seats. I accomplished these feats with only minor issues. Mainly the fact that I am out of shape and carrying about 90 pounds more than I was 2 years ago.

Sitting in the stands and feeling the energy of the crowd I could not help but think how fitting this moment was. There I was watching a high school team from our area playing in a championship game and I began to reflect on how special this moment was. Not to steal any thunder from the young men on the field, but I began to feel like both our journeys paralleled one another.

Here we have some of the poorest school districts in the state of Ohio. It is understandable if we are unable to have success because we are at such a disadvantage. It is OK to feel sorry for yourself and people will understand the excuses. (I AM BEING SARCASTIC, or am I?). The young men of the Trimble Tomcats rose above the norm. They wanted more. They embodied a hard nose blue-collared mentality that is often hard to find in adults let alone teenagers. Football is a metaphor for life and these young men taught many of us adults a valuable lesson.

All the meanwhile, it kind of hit me. These young men already understand what took me about 30 years to figure out. We are not a product of our situation. We do not need to settle for less. We can rise above. We can succeed. However, we cannot do it alone. We need a team. We need support. We need to surround ourselves with people who will pick us up when we fall.

The game did not go the way many of us wanted. Isn't that true for life? As I watched the team jump up onto the podium and hoist the runners-up trophy toward the sky a few players wiped the tears from their face. I do not believe these were tears of sadness, but tears of happiness. Tears that come when you have given your all. Tears that come when you know you have achieved greatness.

Miracles do happen if you pay attention. I have been reminded of that again this week. I cannot explain how I am walking without a cane, climbing stairs, and driving. How can it be that a woman is up and walking after spending nearly 5 chairs wheelchair bound? Finally, how can a group of teenagers playing a game teach so many of us the importance of teamwork?

"You are the God who performs miracles; you display your power among the peoples." (Psalms 77:14, NIV).

Monday, November 25, 2013

Taylor's First Blog- My Oldest Daughter's Perspective

November 25, 2013

Thanksgiving is drawing near and I thought it would be a good idea to write what I am thankful for. First of all, I am thankful that my dad had the oppurtunity to go to the Northwestern hospital in Chicago and have the stem cell process done. So many amazing things have happened to my dad since this process. Also, I am thankful that my dad is healthy and able to be more involved in me and my sister's life. I am thankful that no matter what,even when he was going through the tough stem cell process, my dad will always have my back. Not only is he my dad, he's my best friend and nobody could ever replace our relationship. I am thankful that my dad's happy and we feel like a family again. I honestly don't know how to explain the feeling but before he went to Chicago our family didn't feel complete when we went to the mall, restaurant, and basically everywhere away from home. Now I feel that "whole" feeling again in my heart. I'm not just going to talk about my dad on this one, but I am thankful that I have an amazing group of friends that have been there with me through everything. Through the summer, they definitely had my back while my mom and dad weren't here with me. I love you guys:) I am definitely thankful for my grandma who watched me while mom and dad were away. The main thing I'm trying to say is that I really love my dad and appreciate everything he's done for me. I also really appreciate everyone who has supported my dad and family through this time. Thank you. 

Taylor Hinkle, age 10

Monday, November 18, 2013

The Cough

November 18, 2013:

Well, Saturday marked 4 months since my transplant. Things have really progressed well for me. I am happy to report that I am regaining my strength and stamina. My sensations in my feet and legs seem to be holding steady, but I have definitely seen a remarkable improvement in my arms and hands. While in Chicago, Ann would have to type the blogs and now she is only responsible for proof reading my ramblings. However, my recovery did hit a little bump in the road this past week.

Last Tuesday I developed a cough deep in my chest. You know the one that sounds like a fog horn and leaves a burning sensation through your chest. Yeah, well that was the one. It kind of startled me how fast it came on. Typically, I am not one to run to the doctor for every little cough or sneeze that comes my way, but this one snapped me into action. I feared it would be pneumonia. I knew sitting out on those cool nights watching high school football would come back to haunt me.

Wednesday morning I called my family doctor and they got me right in. They scheduled me for 2:30 and my mom graciously drove me the 14 miles. We arrived about 15 minutes early and found a spot in the waiting room. Now, those who know me best understand that patience is not my strong suit. Every click of the clock sounded like bombs going off. Tick...Tock...Tick...Tock. Finally, after a mere one hour wait my name was called.

The first order of business was a step on the scales. Lately, this is not something I am proud of doing. Begrudgingly I obliged the nurse. Looking at the numbers on the scale kind of startled me. It read 228. Could it be ounces? NO! Could we have converted to some "new math" in order for ObamaCare to allow citizen to keep their current health insurance? NO! The facts are the facts; I have gained quite a bit of weight. I need to own up to that and develop a strategy to start shedding some of these unwanted pounds. More on that to come later...Now back to the actually doctor visit.

After nearly 2 hours, my doctor entered the exam room. This is the first time I seen him since I returned from Chicago. He was more than willing to listen to my adventures in Chicago. He also did an excellent job of scouring through my chart to ensure that he was up to date on all my blood work. Once he was satisfied with all the information he order a rapid strep test. Which to my delight came back negative. He then listened to my lungs and determined the sounded good and strong. Then he determined that I most likely was suffering from an inflammation of my bronchial tubes (AKA bronchitis). Doc prescribed me an additional antibiotic, some cough syrup, and a nasal spray. Two days later I woke up feeling like a new man.

This past week has been a reminder of how delicate my recovery can be. I had been feeling so good that I had become a little lax on my sanitation regimen. I need to take some extra precautions during the cold and flu season. I need to do a better job of washing my hands and not leaving the house without my hand sanitizer. Wash...Rinse...Repeat. That has to be the motto.

Finally, it is important to remember that quitting is easy. I have had several moments in my life that caused me to truly consider throwing in the towel. It is easy to feel sorry for ourselves. It is easy to blame others for our short comings. It is easy to not take responsibility for our actions. You know what, I probably got bronchitis because I was sitting out in the cool fall air week after week watching high school football. I am fine with owning up to that. What we need to remember is, "More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us (Romans 5:3-5).

Do you know how hard it is to rejoice in your sufferings? Yay, I am so happy to be sick, bedridden, and alone. Really? This is not an easy task. This is something that takes practice. With this month being November and a time for giving thanks, I challenge you to look at the positives in your life. To see them as true blessings and to rejoice in those blessings. This is a difficult task to do day in and day out. We must be mindful of it because negativity will sneak in if we do not keep our guard up.

A special gentleman that lives near me has been an inspiration for me this week. He suffers from MS and does in a way that I cannot help but admire. Although I am yet to meet him I am asking that you keep Ken in your prayers. Get well Ken.

Monday, November 11, 2013

Too Good to be True

November 11, 2013

It was about this time last year I decided to take a leap of faith and contact Northwestern University. I remember thinking this was all going to be some cruel practical joke for some new reality TV show. Opportunities like this do not present themselves to people like me. But, then after reviewing my medical records Dr. Burt and his staff wanted me to go to Chicago for an evaluation. Now I had it figured out, this was going to be the part where I get Punk'd. Typically, if something is too good to be true, then it probably is. Well, not in this case.

Since my transplant, July 16, 2013, I have steadily continued to improve. This past weekend is a huge indicator of how far I have come. On Saturday, Ann and I took the girls to an Ohio University basketball game. No big deal, right? Well, in order to get into the gymnasium you have to walk up a fairly long and steep ramp. Last year when we went Ann nearly passed out trying to push me up the ramp. This year I just slowly plodded my way up the ramp.

Then once we were inside we had to climb up a series of stairs to get to our seats. Last year we had to sit in the handicap section because I could not navigate stairs at all. This time, I had quite a since of accomplishment sitting in the stands watching the game. After the basketball game my day was only half over. One of the area high school football teams was hosting the first round of the playoffs so I had Ann drop me off at the stadium. When I finally returned to the comforts of my home Saturday evening, I had put quite a few miles on my legs.

Sunday morning came and I just knew I was going to have to suffer the consequences of my actions. After I woke up and got moving I was surprise at how well I felt. Neither my legs or back were overly sore. It was as if I was ready to put in another full day. Of course, at my own pace.

To put an exclamation point of the weekend, Sunday evening I loaded up my daughters and headed to the grocery store. Armed with the list Ann provided, the girls and I buzzed up and down the aisles. I think it would be safe to assume that it has been well over a year since Ann did not have to go to the grocery store.

Once again, I am stunned at how well my recovery is going. For this coming week remember, "I can do all things through Christ which strengthens me" (Philippians 4:13). A friend I graduated high school with reminded me of this verse this week. She has two auto-immune diseases and still found the strength to complete a 5K run. I will be completing my 5K next year.

Monday, November 4, 2013

Tis the Season

November 4, 2013

I am sure when you read this week's title you thought, "WAIT!!! Thanksgiving is over 3 weeks away and Christmas is more than a month away." Well, you are right, because that is not the season I am talking about. Tis the season for the flu.

Today my oldest daughter came home early from school because she was not feeling well and running a fever. The good news is that Motrin seems to be keeping the fever down. Poor Taylor has been quarantined to her room. We have had a good run on health considering all the germs that get passed around at school.

This got me thinking about the flu season and how it can affect me. I am not going to debate the issue of whether or not you should get the flu shot or not. I have done my research and I do not get the flu shot, but Ann and the girls do. It is important to do your research and make the decision for yourself.

Now, what I have been noticing is that since my stem cell transplant is that I do not have very many hairs in my nose. It has been nice to not have to worry about trimming nose hairs, but I have lost a natural filter. The main purpose for nose hairs is to assist in filtering the air we breath in. If you have ever changed an air filter on a vehicle you get the idea. Here I am with a filter that is not working as it should and I am left vulnerable to all the impurities that my nose would have filtered. The lack of nasal hairs could lead to an increased incident of sinus infections and upper respiratory infections. This is just one of my theories. I wanted to share my ideas, but I am sure that someone out there with a higher IQ than me could dispute my theory.

The next observation stems from the cold Ohio weather. A couple of weeks ago I was at a football game. It was a clear night and there was quite a chill in the air. As I was sitting there watching the game I noticed that my nose was starting to run. Instinctively I began looking for something to wipe my face with. Luckily there were some napkins and hand sanitizer nearby. My nose continued to run the entire time. Wipe. Wash. Repeat.

I then began watching a group of elementary boys playing football behind one of the end zones. Kid after kid wiped his nose on his sleeve or with his hand. Then they were passing the football and I could literally envision the germs being transferred from one boy to the next. It was just kids being kids, but I have learned that most germs are past through contact.

As winter begins to close in on Ohio, I need to be a little more cautious. Even though I feel good, I have to remember that my body is still fragile. My immune system is still growing. I also realize that as hard as we try to develop better hygiene habits it is inevitable that someone in this house will get sick at some point. I need to realize that I can only control the things that I can control.

Finally, I wanted to share another side effect I have been experiencing after my stem cell transplant. For the past 2 months I have been experiencing it and I was not sure how to handle it. The side effect I am referring to is gratitude. I bet you thought it was going to be some flesh eating bacteria. Everyday I wake up I give thanks that I am alive and able to accomplish tasks that are typically taken for granted. The walls that I have built around me have been knocked down and I have never felt better.

Jeremiah 29:11 says, "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." This is a verse I pray on daily. It reminds me that no matter what I go through as long as I have hope I will have a future.

Friday, November 1, 2013

Sitting on the Sidelines

November 2, 2013:

As a teenager having CIDP my sport days were very limited. I never had the opportunity to hit the winning home run; I never experienced the thrill of hitting a buzzer beater to win the game; and I never scored a touchdown under the lights on a Friday night. Sitting on the sidelines is a place that I have grown familiar with.

I have never been one to dwell on the things that I cannot do. One of my greatest qualities has been my ability to put my head down and push through adversity. Even when people tried to drag me down. To reconnect with my competitive spirit I began coaching. Coaching filled a void in my life. It made me feel like I had a purpose. It also gave me a higher level of accountability. While coaching, I was not only responsible to my family; I was also responsible to the young men that I coached.

Tonight I watched a wonderful group of young men play their final high school football game. This group of young men have forever touched my heart. I had the opportunity to coach many of the young men on the team. These young men have preserved where many have fallen away. In terms of wins and losses, our football team has not experienced the full fruits of their labor. When others told these young men it was a waste of time; they did not listen. They were their uniforms with pride.

After the game, knowing that my former players had played their last game, I was overcome by emotions. It seems like just yesterday that I was standing before a group of immature pre-teens with high pitched voices. Then tonight, seeing what truly great young men that have become, my emotions ran over. Even as I write this there is always a memory that pops in my head the makes me laugh and cry all at the same time.

To Garrett, Stephen, Will, and Cody may you always stand strong in the face of adversity. May you always be men of honor and humility. May the character that you have shown these past four years continue. The values you have developed over the past four years will carry you all to greatness. Finally, may you all have the impact on the world that you have had on me and my family.

Monday, October 28, 2013


October 28, 2013

 Our lives are compromised of a series of milestones. We start out as babies where parents cannot wait for their child to roll over, sit up, crawl, walk, talk, and use the bathroom. Then it is the first day of school, first heartbreak, driver license, graduation, and the list goes on and on.

Today, my oldest daughter reaches yet another milestone in life. She is 10 years old. Double digits. One decade of life. As I reflect on her life it simply amazes me. I can still clearly remember the day she was born and how my life was forever changed the moment I looked into her innocent eyes. I am so proud of the young lady she is becoming.

As both my daughters age, I cannot help but be concerned about their health. I was 12 when I was diagnosed with CIDP. My oldest daughter has been diagnosed with Hashimoto's Thyroiditis, which is an autoimmune disease where the body begins attacking the thyroid. Currently her thyroid is still functioning properly, but I am sure it is only a matter of time before she needs to take thyroid medicine.

Over the past week, there have been a few other milestones reached by the Hinkle family. The first milestone is that I made my speaking debut. I was honored to speak at the Central Ohio Blood Bank Annual Meeting in Columbus, Ohio. In a room of about 100 individuals I was able to share my story and how important blood donors are to CIDP patients. I also had met a lady whose friend's daughter went through a stem cell transplant in Chicago for MS. Once again, there is no doubt God is working in my life.

The next milestone reached this week is that we have decided to put our house up for sale and look to move out in the country. This has not been an easy decision. However, now that my health is becoming more and more stable Ann and I are finally not afraid of the future. We actually made the decision to move because we ARE planning for the future. With the girls getting older and their interests changing we are looking to make a move that meets those needs and also provides Ann and I a home that we can grow old in.

The final milestone is that Bryan's H.O.P.E. is holding its first fundraising efforts. I am currently selling T-Shirts and Hoodies and the proceeds are going to help a family that has a young daughter that is currently going through treatments to rid herself of cancer. I am hoping to be able to present the family with a check in November at a St. Jude's Walk.

Remember that in life there are many ups and downs. Everybody goes through them. How you handle the good times is not what defines you. We are defined how we handle the bad days. Those are the days that develop character in individuals. Helen Keller said it best, "Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved."

Monday, October 21, 2013

3 Month Update

October 21, 2013

Last Wednesday marked 3 months since my stem cell transplant. Reaching this milestone came with the reward of no longer taking my antibiotic. I will still continue to take my antiviral and anti-fungal. Although it is nice to see my pill count dwindle, I am a little apprehensive about not having my antibiotic during the flu season. Well, I will just have to wash my hands and be a little more cautious around others.

The greatest change that I have endured over this past 90 days is not one that can be seen. I am no longer ashamed of my illness. I no longer feel inferior to others. I now realize that I have endured and persevered through trials and tribulations that would bring most people to their knees. When you gain confidence on the inside there is no need to worry about how you are portrayed on the outside.

Beside from the confidence I am gaining, I am also experiencing some very exciting physical results. One of the first things I have been noticing is that I am forgetting to use my cane. I often find myself roaming around the house and all of a sudden I realize I do not have my cane. I am taking this as a good sign that my body is becoming strong and not that I am just losing my mind.

Another area of improvement for me has been stairs. I currently live in a 2 story home. Prior to my stem cell transplant I relied on a chair lift to transition between the upstairs and downstairs. Now, I can walk up and down the stairs with only the assistance of the railing. I keep thinking that one day I will rip that chair lift off my stairs, throw it out into the road and run over it repeatedly with my truck. Then I remember that even though I may not need it in the future, it may be able to help someone else out. I can still dream about it though.

In regards to sensation, it seems to currently be a little hit and miss. I definitely have gained both strength and increased sensations in my hands. My feet and legs are certainly getting stronger, but they don't seem to have progressed much in the last month. However, both my upper and lower body are remarkably stronger and I have regained quite a bit of sensations in both areas. I just feel that my upper body is recovering faster than my lower body.

Over the past several months I have had the opportunity to meet some wonderful people who have forever touched my life. I cannot forget the countless others that I have been able to communicate with through Facebook and blogs similar to mine. Undergoing the stem cell transplant has been a complete mind, body, and soul healing process for me. The future for me and my family seems so much brighter.

For this week I have another request. Before you turn out your lights, could you please say a pray for all those who are undergoing a stem cell transplant.

Monday, October 14, 2013

Finding a Purpose

October 14, 2013 

Throughout much of my life I have always wondered about my purpose in life. While sitting in church yesterday, our preacher spoke on the topic of God and our purpose. The words and scriptures in Sunday's sermon offered some enlightenment to me. Ecclesiastes 3:1 says, "To every thing there is a season, and a time for every purpose under heaven." Also, Ecclesiastes 3:17 says, "I said in mine heart, God shall judge the righteous and the wicked: for there is a time there for every purpose and every work."

Having CIDP has often left me feeling as though I am unreliable and a failure. Buried deep in my heart was the knowledge that it was only a matter of time before my CIDP would rear its ugly head and strip me of all the progress I made. With CIDP lingering in the shadows of my life I often prayed for God to share his plan with me for my life. What I have found is that the more I share my life with God, the more of his plan he reveals to me.

According to Proverbs 16:9, "The heart of man plans his way, but the Lord establishes his steps." This is the problem I always had. Even in some of my most trying times, I would not fully rely on God. I believed that my way was the best way. I would not look to Him to lead me and guide me. That was the disconnect that I had. God knew this. That is why I had to be broken down before I could rise again.

There was a time not too long ago that I questioned my faith. How could a loving and caring God do this to ME? Is this God's will? God, how could you do this to ME? Life is just not fair! My problem was that I had my own agenda. I wanted things to happen on my terms. It is important to remember that He gives us what we need; not want we want.

It was about one year ago that I began researching the outcomes I could expect if I stopped taking my medications that were supposed to keep my CIDP under control. During those Google searches I started coming across websites that were talking about a stem cell transplant for CIDP patients. I spent countless hours scouring through webpage after webpage and blog after blog. Just at the moment I was preparing to throw in the towel I was given another reason to keep fighting. This cannot be coincidence.

A lot has changed for me since those sleepless nights. I keep thinking about Ecclesiastes 3:17, "for there is a time there for every purpose and every work." I now know it is from this that I have a burning desire to continue molding and shaping my non-profit, Bryan's H.O.P.E. I am also working with the American Red Cross on setting up a blood drive in December. God has helped me realize that my experiences can act as a motivator to others. Therefore, my purpose involves working in areas of society to provide people undergoing difficult times with the motivation to keep fighting.  

Next week I will be speaking at a luncheon for the American Red Cross. My goal is that I will be able to bring awareness about CIDP and other invisible diseases. In the past, I would have never agreed to speak to a room full of strangers about CIDP. My purpose would have been to appear to be as "normal" as possible. I now understand that my purpose is to share my experiences.

I would like to leave you with a thought for the week: Faith is having HOPE when all things are crumbling around you. 

Monday, October 7, 2013


October 7, 2013

As the weather in Ohio begins to change from summer to fall I cannot help but be thankful for the changes that I have also experienced. Each day I am amazed and grateful for the progress I am making. Just four months ago I was admitted to Northwestern to officially begin my stem cell transplant. At that time I could barely stand and needed the assistance of either a wheelchair or walking. Getting a shower and dressing myself sucked my energy. Now, almost 3 months post-transplant, I am walking freely around my house. For precautionary reasons, I take my cane with me when I leave the house. I still occasionally use my roller walker if I am going to be around a lot of people. My walker gives me the confidence to know that I can sit if I need to and it alerts others to watch out for me. However, everyday is not always sunshine and rainbows.

This past week I have been feeling slightly run down. I am sure it has nothing to do with me taking afternoon drives through the country or walking up and down my stairs several times a day. I just do not seem to be able to figure it out. I am sure that my body is ready to handle just about anything I can throw at it.

 Change can often be perceived in a negative way. You know, like when your wife wants to change her husband. Or, when your family moves while you are in college and doesn't give you their forwarding address. Well, when it come to my stem cell transplant I have been changed for the better. Sure I may have some bad days, but these bad days are nothing compared to my CIDP bad days. I may be a little sluggish from time to time, but I do not have the pain.

Monday, September 30, 2013

What's up Doc??

September 30, 2013:

Last week I had a visit with my neurologist at The Ohio State University Medical Center. This would be the first time we have seen each other in almost a year. I was quite nervous for this visit. She has been my neurologist since I was 12 years-old. We have had our ups and downs, but I am so thankful that she was able to diagnose rather quickly. I read so many horror stories from individuals who bounced from neurologist to neurologist with no answers.

The morning of my appointment, I gathered up my discharge summary and my trusty cane and out the door I went. Ann took the day off work since I still need a chauffeur for long trips. As Ann and I navigated our way to the big city of Columbus, Ohio it was obvious that we were both a little nervous. Ann and I had a rather quiet ride. She was busy chewing on her finger nails and I was lost in thought of how my doctor might react. Before I knew it we were pulling into the parking lot.

After about a 30 minute wait it was finally time to see my neurologist. I must say that while I was sitting in the room my stomach was full of butterflies. It felt like an eternity. Finally the door swung open and there she was. She always barges into the room with a huge smile which is followed by the "How are things going." Before I could really answer she followed up with, "So did you go to Chicago?" Once those pleasantries were out of the way it was down to business. So she put me through the usual examination.

Her first command was for me to take off my shoes and walk across the room. I was all too happy to oblige her. I even did it without my cane. Watching me walk, she said "Wow!" Then she had me sit on the examination table so we could begin the neurological evaluation. I followed her finger, puffed out my cheeks, closed my eyes while she poked and prodded me. All the time while she was performing the examination she was checking the results against my prior visit with the nurse practitioner in March. At the conclusion of the exam she state that I had made a "marked improvement" and that she would share my experience with her colleagues.

The day I was discharged from Northwestern, one of Dr. Burt's patients referred to us as "trailblazers".  I could not agree with her more. As days fly by and my health continues to improve I feel it is important for me to share these experiences. It is our progress that will bring light to the positive effects of the stem cell transplant for autoimmune diseases. So with each passing day I am pleased to be part of something so powerful.

Monday, September 23, 2013

It's Time to Kick off the Training Wheels

September 23, 2013:

This past weekend Ann was giving me grief about wanting to go to Wal-Mart. I know it shames me to say that I actually was excited about going into that retail abyss. Apparently, Ann did not share in my enthusiasm. Ann has always been my moral compass. When I come up with all my hair-brained ideas she is always there to ensure I have weighed all the pros and cons. So here we are again debating back and forth on whether going to Wal-Mart is a good idea. Off to Wal-Mart we go.

As we pulled into our parking spot at Wal-Mart, Ann turned off the of the van and gave one final plea, "Are you sure this is a good idea?" Running out of ammunition I turn to her and say, "You got to take the training wheels off sometime." Then I opened the van door and swiftly exited the vehicle before I was hit with her keys.

I would like to report that, with the assistance of my roller walker, I bobbed and weaved my way through the aisles of Wal-Mart like a seasoned professional. The most disappointing part of our trip was the fact the what we wanted was cheaper on-line. Had my attention not been diverted by the faint echo of coughs and sneezes, I could have made a real fool of myself in that place. I figured since Ann wasn't real keen on our trip I doubt she would post the required bail money. 

All kidding aside, it was a little daunting to go to such a public place. I think I am becoming conditioned to use hand sanitizer any time a person coughs or sneezes within an earshot. However, I also cannot stay hid away like I had initially planned. It is important for my sanity to get out and socialize with friends and family. All of my blood work continues to be in the normal range, and my doctors assure me it is fine to go places. They say just avoid large crowds and sick people.

This past week I have not made any crazy breakthroughs. I just continue to get stronger and stronger. A month ago I would never dreamed I could walk through two different stores and be able to get out of bed the next day. Plus, I have not had anymore dizzy spells or falls. I have developed a new symptom (probably more like sensation). Early in the morning or at the end of the day I have started feeling "bee stings". It feels like I am being stung by dozens of bees all at one time and in different areas of my body. I will bring this to the attention of Dr. Burt's staff, but I feel it is my nerves regenerating. It is simply amazing what a change in mindset can do. Last year if I would have experienced these stings I would have freaked out.  Now I see them as a blessing in disguise.  Taking it one day at a time.  I hope to keep my training wheels off at least another week. 

Until next week, keep peddling.

Monday, September 16, 2013

Too Good to be True

September 16, 2013:

While researching Dr. Burt and the stem cell transplant procedure I kept reading all these success stories. I heard stories of individuals who suffered from CIDP, and other auto-immune diseases, regaining their lives. Today marks my 60th day post transplant and I am honored to be telling my success story.

With each passing day I become more and more thankful that I was able to under the stem cell transplant in Chicago. Even after reading many success stories I am still shocked at the results I am having. I never would have thought that in two months I would be able to walk, climb stairs, or drive. Another promising note is that all of my blood work has been coming back excellent and my sprained foot is healing nicely.

There have been so many people that have supported me and my family these past several months. As a way to honor their support I have committed to pay it forward to others in need. The first way that I plan to pay it forward is by starting a nonprofit organization. The paperwork for the nonprofit is underway and I will soon begin setting up the organizational structure. I feel as though I should already had it set up, but then again it has only been two months. All good things come in due time.

The other venture I am working on is an annual blood drive. For those undergoing a stem cell transplant, it is almost certain that a red blood cell, or platelet, transfusion will be needed. During my transplant I received 3 units of red blood cells. The other patients I met needed at least one platelet transfusion. I was told by Amy Morgan, Dr. Burt's NP, that there have only been about 3 people in the Northwestern study to go through the stem cell process without a blood transfusion. Therefore, I feel it is important for those who are able to give blood to do so. More details about the blood drive will becoming once I have a firm time and location.

As day +60 comes to an end, I do not want to think where I would be had I not opted to pursue a stem cell transplant. Up to this point, I have noticed that I am able to walk through my house without any assistance. Also, I have noticed my stride is becoming longer and I am able to walk longer distances as long as I have my cane or walker. I am slowly regaining my endurance. Stairs are doable as long as I take my time and use the rail. Transitioning from sitting to standing is getting much easier. I have been driving short distances in my truck. Oh how I missed driving. It has been over a year since I sat behind the wheel. That has been one of the most gratifying feelings of the past week.

Please stayed tuned for more information about my nonprofit, Bryan's H.O.P.E, and the upcoming blood drive. I hope you have a great week.

Monday, September 9, 2013

This is for Shirley.

September 9, 2013:

This week was not without heartache. Heaven gained another angel last week when a member of my family passed away. I had not seen Aunt Shirley in many years, but we had reconnected through Facebook. Shirley was a devote Christian woman who always put everyone's needs ahead of her own. She had her own health problems, and never did I hear her complain. She read my blog daily and relished in my recovery. Shirley made sure that my name was on every prayer list she could think of. I know that my recovery has been so successful because of the prayers the Shirley made sure was said I my behalf. Thank you Shirley.

Time goes by so fast. Last week I talked about how I had been procrastinating. Tomorrow is not guaranteed. All we have is this moment, right here, and right now. It is important to remember this. If I were gone tomorrow, how would I want to be remembered? I would want to be remembered how Shirley was remembered. It is without a doubt she is remembered as a loving, caring, and a unselfish woman who walked with God. Goodbye Shirley, you were a shining star in what often seems like a dark world.

The question is, "How do you want to be remember?"

Monday, September 2, 2013

On the Move

September 2, 2013:

No longer can I sit cooped up in this house. I need to get out and start living again. In doing so, I am still staying clear of large crowds and sick individuals. It just feels nice to go outside and sit in our swing and watch my dogs play in the yard.

Over the past week I have fixed a few issues I was having with my truck (which could not have been done without the help of my brother-in-law). I also went with one of my friends to watch some high school football on Friday. There is something about a Friday night watching high school football that is soothing to my soul. Then Sunday I watched my oldest daughter cheer for the 5th and 6th grade football team.

As my foot has began to heal from my fall, I am beginning to notice that I am doing things without thinking about it. For example, on Sunday we were returning from watching my daughter cheer and I had to use the bathroom extremely bad. When we pulled into the driveway, I hopped out of the car and bounced up the three steps on our porch on my way to the restroom. I was halfway up the steps before it truly hit me that I was actually walking effortlessly.

I am also noticing that fatigue seems to becoming less of an issue. I know that this is asking for trouble, but I have been more active this week and I am yet to experience one of my "spells". This is not to say that I still do not fatigue easily. When I leave the house I am still using my roller walker because it doubles as a seat for me to rest on when I need to.  It is just that it is not taking days to recover from a busy day. Previously, going to the doctor for a blood draw would have sapped most of my energy. My recovery seems to be more normal (whatever normal is). Each day I am waking up feeling a little more rested and my energy stays with me a little longer.

Each week I am amazed at the results I am seeing. For over a month and a half I have not been on any medications to treat my CIDP. My body is continuing to respond to the stem cell transplant and I am getting stronger every day. I cannot wait to see what this next week has in store for me. However, I do know that I need to quit procrastinating and get my butt in gear working on organizing my foundation. “You cannot escape the responsibility of tomorrow by evading it today” - Abraham Lincoln.

Monday, August 26, 2013

Another Week in the Books

August 26, 2013:

 I cannot believe that my stem cell transplant was only a little over a month ago. As I sit here writing this post it seems like it happened years ago. I could not be more pleased with the results I am seeing. I am out of the wheelchair and I am motoring a long with my walker, despite my injured foot. I often wonder how I became so lucky to have found Dr. Burt and his research study. I am sure that God had a hand in it and I am thankful everyday.

Today, I thought it would be a good idea to share with everyone some of the functions that I have regained since my transplant. Here they are:
  • I am able to get in and out of a chair.
  • I am able to button and zip my clothing.
  • I am able to walk with the assistance of a walker/cane (NO MORE WHEELCHAIR).
  • I am able to put on and tie my shoes.
  • I am able to get up off the floor. (This comes in handy when I fall).
  • I am able to walk up stairs. (Just a few).
  • I am sleeping better.
  • I can get in and out of the shower.
  • I am able to type the blogs.
I know there are many more subtle improvements that I have made, but these are the major ones I am proud of.

Something I would like to share with future stem cell transplant patients is to be prepared for a let down after you return home. While in Chicago your life is structured. You are basically told when and where to be and what you need to do. Then when you return home and you lose that routine it can be a little disheartening. For me, I am so fearful of getting sick that I have chosen to isolate myself from the outside world. Meanwhile, I have a friend that felt going out, but staying away from crowds, was best for their recovery. That is the beauty of it all; so many others have gone through this process that it is important to draw from their experiences. You can take bits and pieces of what has worked for others and develop your own routine.

This past month I have experienced my share of highs and lows. I am so excited for the improvements I am seeing, but I am impatient. I want to have years of damage repaired in a month. I know it doesn't work that way. Honestly, hurting my foot has been the best thing for my recovery. Now that I have been forced to slow down I have no longer experienced any of the "spells" I was having last week. Once again I am amazed at the signs God gives us when we open our eyes.

This is in February of 2013. You can see I had to use a wheelchair.

Here I am walking with a cane. This was the day we returned from Chicago.

Monday, August 19, 2013

Oops....I Overdid It Again

August 19, 2013:

This past week I have discovered that my body and mind are not in sync yet. My rehab workouts consisted of walking on the treadmill for 5 minutes, working on the stepper for 5 minutes, and then concluded with my upperbody band exercises. So, I am putting in about 20 minutes of work each day. In my mind this is nothing more than about 20 minutes of exercise. However, my body was trying to tell me that this was too much.

Over the past week I had been experiencing what I would call "spells". These spells consist of my arms and legs trembling uncontrollably and my energy instantly being sucked from my body. The spells were generally occurring in the evenings and as long as I could sit down immediately the spell would quickly pass. Once the spell passed I felt fine. Therefore, I did not put too much thought into these spells because I knew how to cope with them. I was wrong.

Last Thursday, while Ann and the girls were in bed, I had one of these spells while on my way to the bathroom. I was caught in no-man's land. I could not find a place to sit down and I only had my cane. The result of this spell left me in a crumpled pile on the bathroom floor. The pain instantly shot through my right foot and up my shin. As I laid there, waiting for Ann to once again come to my rescue, I was sure something was broken.

The next day my foot was bruised, swollen, and painful to walk on. It was off to get an x-ray for me. The good news was the x-ray came back negative. Dodged a bullet there. This was a wake up call for me to pay more attention to what my body is telling me. With this foot injury, I have been forced to cut back on my workouts. In return, I have not have a single spell until today.

Today I was out and about getting my blood draw and picking up prescriptions. When I returned from running around I went directly to my chair and remained there until dinner. As I was on my way to the kitchen table I was hit with another spell. The worst part is not knowing when one of these spells is going to occur.

I have spoken with the nurses in Chicago and they feel that I am just overdoing it. I have put the cane on the shelf and gone back to the walker. My thought process is that I can conserve some of my energy by using a walker as opposed to using my cane. The walker I have has a seat on it; so no matter where I am I will always be able to just sit down when I feel a spell coming on. I also need to scale back my workouts and make sure I am getting proper rest in between workouts.

It seems like so long ago, but I am just over 1 month post transplant. I am very pleased with the results I am seeing and feeling. The hardest part is that my mind thinks that my body should being doing things it is not quite ready for. This foot injury is only a minor setback. I will continue to push the limits. Once I find the limits, I will then back off a little.

I know I push myself too hard. I know I bring a lot of misery upon myself because I push so hard. Honestly, this is all I know. I have had to push through pain and fatigue my entire life. It is going to take me a little while to adjust. I just hope that as I am learning my limits I do not break anything major.

Thanks again for checking in. More to come next week.

Monday, August 12, 2013

Cabin Fever

August 12, 2013:

This past week has been a little bit of a struggle. Last week, Amy called to report that most of my blood work had come back normal; however, my CMV was starting to turn positive. She assured me this was nothing to worry about. However, she needed to switch me to a stronger antiviral medication. So, what is CMV?

According to the Mayo Clinic website, Cytomegalovirus (CMV) is a common virus that can infect almost anyone. Most people don't know they have CMV because it rarely causes symptoms. However, if you're pregnant or have a weakened immune system, CMV is cause for concern.

Once infected with CMV, your body retains the virus for life. However, CMV usually remains dormant if you're healthy. CMV spreads through body fluids, such as blood, saliva, urine, semen and breast milk. People with weak immune systems have a greater risk of becoming ill from CMV. If you're pregnant and develop an active infection, you can pass the virus to your baby. There's no cure for CMV, but drugs can help treat newborns and people with weak immune systems.

CMV can resemble symptoms similar to mononucleosis. This virus can also cause problems with the liver, intestines, nervous system (encephalitis), and lungs (pneumonitis).

I am looking forward to getting my blood work by this week to see if the new antiviral medication did the trick. I have a lot of faith in the doctors at Northwestern, so I am certain that everything will be fine.

Besides dealing with this CMV thing, I am battling boredom. The walls of my house are beginning to close in on me and my mood has soured. I know that this may be a natural reaction to being secluded, but that does not mean I have to accept it. Physically I am feeling better and want to do so many things that I am often becoming frustrated. In Chicago, I was surrounded by people who understood and could relate to my struggles. They had become a support system to me. Sharing stories with my transplant buddies was so soothing to my soul. Now that we are home, I feel like a little piece of me is missing. I told Ann that I had felt like I had lost my purpose. I know that is not true, but there were a couple of days that I did feel that way. I thrive on being active and helping others. That is why I loved coaching. Now, that ship has sailed and I am on to my next phase of life.

As I wrote about in an earlier blog, Ann and I are starting a foundation, Bryan's H.O.P.E. The purpose of the foundation is to bring CIDP and Stem Cell Awareness while providing hope and support to those who suffer from chronic illnesses in our community. Well, I just jumped right in and got the ball rolling. I have registered my foundation with the State of Ohio and received my Employer Identification Number. The fun now begins of setting up the organizational structure and applying for tax exempt status from the IRS. This task should halt some of the boredom. I am operating under the premise that I am just going to jump in with both feet and I will either sink or swim.

I just need to keep reminding myself that the short-term sacrifice is worth the long-term success. That is not an easy task in today's world. Delayed gratification is slowly becoming a dirty word. How many of you have threatened to throw your computer out the window because it was taking more than 30 seconds to load a page? I know I am guilty of that. That is why after a few negative days I have decided to try and find a positive spin. This week has truly been about reminding me about the importance of delayed gratification. Remember a garden is not harvested the day after it is planted.

Monday, August 5, 2013

It's Good to be Home

August 5, 2013:

Last Thursday, we said goodbye to Chicago. Over the course of the 1 hour flight I could feel my excitement growing. It had been weeks since I had hugged my daughters. Finally, we landed in Columbus and as we proceeded to baggage claim we were greeted by two little girls jumping up and down waving their Welcome Home signs.

When we arrived at our house we were greeted by many of our family and friends. A member of our church said a wonderful prayer and then balloons were set free. This gesture truly touched my heart.




Last fall when I had decided to pursue the stem cell transplant I told Ann and my Mom that I wanted to do this on my own. I did not want to feel indebted to anyone.  Funny how God gives us a kick in the pants when we need. There is no way that I could have gone through this process if it was not for all the people who helped us along the way. My family has truly been blessed.

Over the next several months I will be getting weekly blood draws to continue to monitor my blood counts. Everyday I wake up I cannot believe that I am able to walk. It has been simply amazing. I am now able to walk up the 15 steps it takes for me to get from our first floor to our second floor. For the first time in over 20 years I am no longer taking medicines for my CIDP and I am continuing to improve. What a great feeling!

On another note, I mailed my packet into the State of Ohio to get the ball rolling for my foundation. I should hear back from them by next week. I am looking forward to the beginning of a new chapter in my life. I understand the power of hope and knowing the power that this 4 letter word carries drives my passion to help others. Below is a picture of the gift Ann got me.

From here on out, I plan to update the blog on Monday evenings.  So, more to come next week.  Have a good one!

Wednesday, July 31, 2013

My Bags are Packed

July 31, 2013:

The time has come for us to pack our bags and prepare for our flight home tomorrow. In my wildest dreams I could have never imagined a more positive outcome for me and my family. Tomorrow, as we board our plane, I am sure that I will be sad to leave Chicago, but I know that I will be happy to return home. Our community has rallied together to make sure that our home is all ready for our return. But more importantly I cannot wait to get home to see my daughters. Even as well as my health is progressing, there will be no better feeling than having our family reunited.

Also, as my time in Chicago draws to a close, so will my daily blogs. From here on out I will most likely provide weekly updates. I will also use the blog to post updates about the foundation I am starting. The response to my blog has been amazing. I want to thank all of you who tuned in nightly to take part in my journey. For now, it is not good bye but rather see you later.

Tuesday, July 30, 2013

Your Neurologist Said What?

July 30, 2013:

Through sharing my blog I have been contacted by several CIDP patients who are either former transplant recipients sharing their stories with me or they are interested in more information about the stem cell transplant process. Today, I came across a CIDP patient who has been discussing the stem cell process with their neurologists. From what I can gather this patient has a neurologist in one city that coordinates with a local neurologist in their home town. While presenting their case to the coordinating neurologist the patient was met with resistance. Apparently this neurologist felt that the stem cell procedure was "too aggressive of a treatment." When I read those words I almost fell on the floor. WHAT? I have had CIDP for 20 years and I have been through all of the standard "passive" treatment plans. For most of us, these treatments do not work. In my case, I had tried virtually every treatment option out there and it was time to get aggressive.

Now, let me be clear: STEM CELL TRANSPLANT IS NOT FOR EVERYONE. If your symptoms are under control and you are happy with your quality of life then you are where you need to be. I discovered the stem cell transplant program at Northwestern because I had become dissatisfied with my treatment options and my quality of life. My life revolved around being hooked up to an IV pole while IVIG was pumped through my veins. And for what? My quality of life was deteriorating. I had gone from walking with no aids to being virtually wheelchair bound. This is what the standard treatments had done for me. I was not going to just sit there wasting away. That is what drove me to Dr. Burt.

Another argument I hear is that it is unknown what the true long term effects of the stem cell process will have on a patient. Well, from a doctor's standpoint I will give them a pass on this one. Doctor's have to tread lightly on this issue because it is a research study and we are a sue first nation. However, I know what the long term side effects of prednisone are. I am 33 years old and I have osteoporosis. I also know the long term financial cost of IVIG. So, for me when I was deciding on whether or not to pursue Dr. Burt's study, I did not ask permission from my neurologist. I did my homework and presented it to my neurologist in a way that said, "I am doing this and it would be great if you could support me. If not, I understand and you need to understand why I need to do this."

It is the discussions like the one I had today that reenforces my drive to start educating neurologists. I have seen the benefits of the stem cell transplant, and I would recommend anyone who is thinking about it to come to Chicago and meet Dr. Burt. I understand that these neurologists make a living on repeat business. Therefore, if we all get healthy, we will have no need for them.  The truth is we have to decide for ourselves what we want our treatment plan to be and fight for it.

Here are some articles and information that you can take with you to show your neurologist.


I am sure there are other articles.  For those who follow this blog if there is other information, please let us know in the comments.  The more articles to support this HSCT the better.