Monday, October 28, 2013

Milestones

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

Changes

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.