Tag: Choice

A Day In The Life

Today’s a new day! Ever wondered what a day living with chronic illness and health challenges looks like? Today I will take you on a journey into the twist and turns of a day living with long-term health issues.

From the moment I wake up, I’m already facing barriers. My chronic illnesses make it difficult to get going. For those not aware, based on my health issues, I have slept in a recliner for about the past twenty years. It’s just too hard to get in and out of a bed. Every day is a balancing act where I have to be mindful of my energy levels and make sure that I’m taking time to rest. 

An Introduction To My Health Journey:

In 2002, I was diagnosed with multiple forms of arthritis. That year was filled with a lot of experimental treatments. Then in 2003, I was diagnosed with cancer. Thankfully I was able to have surgery to remove the tumor and never had to walk through the struggle of chemo and radiation. Let’s speed things up. From 2007-2024, I have been diagnosed with Parkinson’s, Myasthenia Gravis, Gastroparesis, Type 2 Diabetes based on all the steroids, had a stroke, diagnosed with cluster headaches and just a few months ago was diagnosed with early onset dementia. That’s my rap sheet!

What My Night and Morning Looks Like :

Based on my neurological issues, I am up and down most of the night. So I never wake up feeling rested. I wake up stiff, so I need to move around and take a host of medications in the morning. Of course meds have side effects, so that can be difficult.

Since I deal with gastroparesis, eating has been a major issue for many years. That makes taking in fluids and food a huge and painful task. So every meal, every day is an adventure.

My mornings are dedicated to spending time with God, journaling and trying to exercise. For me, walking is the best type of exercise for me. I never know how many laps I will be able to get in. I have to be careful not to overdo it. If I do overdo it, my body will pay for it the rest of the day. I spend some time each day for reflecting on life and looking at how I can hopefully encourage others as I continue running this journey. These days, I tend to take a lot of short cat naps. Over the last year, the pain has increased, so that’s a daily struggle. Unfortunately, pain meds and gastroparesis do not really care for each other. So most days, I just live with the pain.

One thing I choose to do everyday is get dressed. I never lay around in my sleeping clothes. It makes me feel good to get cleaned up and get dressed.

My favorite part of any day is spending time with my bride and friends that choose to reach out. Spending time with loved ones is very important to me. I love sitting around and enjoying great conversations. Also, I try to read every day. My love for reading has been challenging the last few years, since it’s hard to stay concentrated. I also spend time listening to music each day. Music can make everything a little bit better.

In the evening, Laura and I like to talk about our day and possibly watch a little television. Based on my day, my bedtime varies. But since I sleep in my recliner, I can fall asleep anytime my body and brain allows me to. Every night is an adventure.

What I consider a daily self-care must do:

Writing about what I’m grateful for in my journal helps me remember the positives, even on those really hard days. Living with long-term health conditions can be exhausting and can be very negative if you allow it to get on top of you. 

Several people have asked if I had one day without pain and could step away from my health journey what would I do?

I would lace up my running shoes and go for a very long run. For those new to my journey, in my healthier days I was blessed to complete 350 marathons.

Another question people asked me a lot: Is there anything I would like to share about daily living with chronic illness and life challenges?

There’s a lot, but I do not want to make this post any longer than it already is. One of my hopes is, people will realise that we never know what someone else is really going through. So be kind and respectful. It doesn’t help when people tell me how I should be living out my health journey. Just be supportive and walk through this journey with me.

By sharing what my day to day life is like, I hope I can raise awareness of the bigger picture as people only see snippets of my journey online or see me on my best days in person. I am not sharing this for pity or sympathy and I am not complaining. I just want to give you some insight into this crazy beautiful health journey.

The Takeaway:

Writing about my day living with chronic health issues has been quite eye opening to me to see how much life has changed over the years. I have a strong need to celebrate the love and support I have received over the years from family and friends. Writing this post has let me see how faithful God has been to me, as I continue to run this beautiful journey.

I hope that you have found this post to be a helpful insight into life with with long-term health issues. There are so many people walking through a tougher battle than me. So if you know someone dealing with chronic illness, take the time to reach out to them and support them on their journey. ~OC

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Our Health and Living

Today’s a new day! Long-term and terminal illnesses can be a scary road to navigate. It’s hard on one’s body, mind and soul. And everyone that cares for them. How will my body and mind handle today? That’s a question I ask myself on a daily basis. Chronic and terminal illnesses also raises many questions that many people shy away from unless they are faced with it directly. But if we’re listening, many lessons can be learned.

Health issues have a way of reminding people that time is a valuable, non-negotiable, and a non-renewable resource. With that said, how do we look at the bigger picture of life and find out what is truly important? 

Spend Time Focusing on Relationships:

We were not meant to do this life alone. God did not create us to be Lone Rangers. I know of no one who regrets time spent building meaningful relationships regardless of life’s struggles.

Take time to ask yourself the following question: Are you truly making time for your family and friends?

Trim That Fat:

I am not talking about dieting and exercise, but those are important parts of our lives.

No, I am referring to something that a lot of times we do not even notice. I am referring to our home and our lives. We all have a tendency to fill both with clutter and hang on to things we do not need. A life-changing diagnosis can become the catalyst for the housekeeping of our home and heart as we realize what is truly important in our lives. It is also a good time to reflect on our faith.

 “Let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us.” ~Hebrews 12:1-2

Speak your Heart Now:

It is good for all of us to review and consider our relationships. Because we all know relationships can be messy at times. If we love people, why not let them know how much they mean to us. Now! Why wait until it’s too late? If we have hurt someone or offended them in some way, why not seek their forgiveness and do what we can to make it right.

Who are the most important people in your life? Take a moment to think about that. Maybe even say their names out loud or write them down. Then ask yourself this question: Have I honestly shared what each of those individuals truly mean to me?

“A heart at peace gives rest to the body.”   Proverbs 14:30

Set New Goals (Dream!):

It can be easy to wait for a challenging season to be over. “When I get better, then I will take that trip.” “When I get better, then I will _____.” Why not take that trip now? As I have walked through this long journey of health issues, Laura and I have learned to take those trips now. Even though those trips can be tough on my body, the memories are priceless. So go live out that adventure. Experience love, joy and happiness during even the toughest of times. I encourage you to find what brings you happiness and go experience it. Keep dreaming some big dreams, set some goals, and do what you possibly can to make them happen.

Many facing long term health challenges find that those trials have helped them clarify and simplify their lives.

During my own health journey, I have discovered what’s truly important in life. For me, it’s my faith, my relationship with my bride, relationships with loved ones, encouraging others and truly living out my God-given purpose in life.

What can we learn from this?

Praise be to the God and Father of our Lord Jesus Christ,
the Father of compassion and the God of all comfort,
who comforts us in all our troubles,
so that we can comfort those in any trouble
with the comfort we ourselves receive from God. ~2 Corinthians 1:3-4

I hope and pray the words above have brought some comfort and encouragement. Go live your life! ~OC

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That First Christmas…

Today’s a new day! I love the Christmas season. The songs, the lights and everything bright and merry. As I was listening to the classic “ I’ll Be Home For Christmas”, I started reflecting on that first Christmas so many years ago.

Joseph and Mary were not at home. They were not surrounded by family and friends.

That first Christmas was not beautiful to behold when viewed from a human eyes. There were no fun holiday parties to attend with friends and family. No prizes for the best Ugly Christmas Sweater. There were no merry songs “making spirits bright.”

That first Christmas was a dark, musty barn with little more to offer than a manger with some straw. It was strangers—smelly, dirty strangers—visiting instead of the faces of familiar loved ones. It was feeling far away, lonely, and no doubt afraid and anxious because of the unknown.

That is what “Joy To The World” first looked like.

That first Christmas was about a young couple who followed an unseen God on a journey that was impossible to understand—a journey that led them into a dark, lonely, and humble place so that The Light could break forth in an unexpected and glorious way.

Joseph and Mary would not have chosen to script their story the way it unfolded. If they had, there wouldn’t have been a virgin birth. There wouldn’t have been a stable visited by shepherds. They wouldn’t have chosen to leave their loved ones to travel so far from their comfortable home at such a delicate time. Joseph wouldn’t have chosen to face the utterly disappointing words “There’s no room at the Inn”, for his needy bride. Had they chosen to write their own story, it would have looked better to the human eye.

But . . .because they chose to let God write their story, it was beyond beautiful. Because they accepted God’s story for their lives, their arms were the first to embrace the human form of The One who had held them and carried them to this point. In the midst of obscure details and overwhelming circumstances, Joseph and Mary went. There they were rewarded by the physical presence of the Almighty God. Joseph and Mary went, but Jesus came. 

He came! That is why we can sing “Joy To The World” with such happiness this Christmas season.

The story of Jesus is that He came. He came in the form of a precious baby. Jesus came to change lives. He came to bring great tidings of comfort and joy. Jesus came to bring peace on earth. The world forever changed on that first Christmas night.

Emmanuel, God With Us, still comes. That’s His story. That’s our story.

When we throw ourselves into accepting and loving and living out His Story without reservation, we find out what an overwhelming, beautiful story and gift it really is. Merry Christmas! ~OC

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Singing Hallelujah

Today’s a new day! As I have walked this crazy beautiful health journey for over 22 years, I’ve had a lot of time to think about the journey. These thoughts have been like a blueprint for my journey. A journey that is radically different to the one I envisioned 22 years ago.

When I received my first diagnosis back in 2002, I was told after the shock of the diagnosis I would deal with anger and depression. Those well meaning health professionals were wrong. As crazy as it may sound, I feel like this health journey is quite possibly one of the best things that has ever happened to me. Yes, the journey has not been easy. All the surgeries, treatments and hospital stays have not always been pleasant. It’s not the blueprint I would have written for my life. But it has made me really re-evaluate a lot of the things I once held close. It’s made me appreciate my family and friends so much more and realize that possessions mean nothing when you’re faced with the real possibility of dying. Most importantly, it has made me so very aware that the God I believe in and serve is so much bigger and so much closer to me than I ever could have imagined.

Throughout history God has had many names, one of them being Immanuel, meaning ‘God with us’. I have never known that to be more true than I have the last 22 years and counting. Sometimes I wonder why I was chosen to walk this journey. But then God blesses me with a beautiful interruption and I am reminded that God has a purpose for my journey.

I know that God’s ways are higher than my own and there has been immense good that has come from this crazy beautiful health journey. God has used my health journey to bring me and others closer to Him. To bring encouragement.

As I walk through this journey, woven into the fabric of my life has been an understanding of what it means to suffer, and from that understanding has flown love, compassion and mercy.

During this journey, I have continuously leaned on Psalm 139:15-16, 2 Corinthians 4:16-18 and Hebrews 13:5. I will let you research those scriptures on your own. While this health journey and everything that has come with it may seem chaotic, I know there is purpose in this crazy beautiful journey. Not my purpose, but the purpose of a God who holds the universe in His hands… who knew me from the moment I was conceived in the womb…. who has walked beside me every day of my life. I may not understand everything that has happened along this journey and maybe on this side of Heaven I never will, but I know that whatever happens, God is in control and he has promised he will never leave me or forsake me.

I don’t know about you, but that gives me a tremendous amount of confidence that everything is going to be alright.

Because of God’s goodness I will sing Hallelujah, Hallelujah. Singing Hallelujah because I am living a blessed life. Singing Hallelujah because my bride who loves me and is standing strong with me on this journey. Singing Hallelujah because I have amazing family and friends who continue to stand with Laura and I during this unending journey. Singing Hallelujah because God walks beside me and fights the battle for me. He commands his angels concerning me and they guard me. God is my fortress, my hiding place while the battle rages around me. He stands between me and my health issues that would seek to take my life and says to the sickness “no further… you will not harm him”.

Singing Hallelujah because I am still alive…. and hopefully will be for many years to come.

There are so many reasons to sing Hallelujah…. so many…. and as long as I have a heartbeat you will hear my Hallelujah.

Whatever you see in me that you think is good comes from Heaven.

It’s not my doing…. it’s His. ~OC

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Word for 2025….Guarded

Today’s a new day! For probably the last ten years, every December I ask God to give me a word for the upcoming year. This year is no different, even though this year has been a life changing year for Laura and I and the year is not over yet. But after a lot of prayer, the word God has given me for 2025 is Guarded. Some people might find that a surprising word as we get closer to entering a new year. But let me explain.

Many people know about my story concerning my crazy beautiful health journey. Over the years, I have shared my story and struggles on social media, in conversation, in books and even an award-winning documentary. I have been blessed to experience some amazing opportunities over the past 22 years. I have also experienced some great pain as more than one “friend” has used my story for their personal gain and discarded me after I was no longer the flavor of the month. I do not share this for any type of sympathy, but to let you know why I chose the word Guarded for 2025 and why I will have less of a presence on social media next year. The daily text of encouragement will continue for those friends God puts on my heart.

In 2025, I will spend more time cultivating the real relationships in my life and guard myself against those who only contact me when they need something or feel guilty. As I continue to navigate life with dementia, I do not have the energy or desire to put anymore energy into fake and superficial relationships.

No, 2025 will be spent making memories with those who truly care about me. Not just the “Miracle Story.” Those few friends who actually reach out to me without me always having to innate the conversation or get together. I am looking forward to a beautiful memory filled 2025.

What will be your word for 2025? ~OC

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True Freedom

Today’s a a new day! True freedom comes from being clothed with the imperishable beauty of Christ. Just like Adam and Eve, when Christ rescued us from our sins, He gave us better clothing to cover our shame – Himself. What a beautiful picture. ~OC

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Infectious

Today’s a new day! Fear is infectious. Let it spread and it will paralyze us all. The only antidote for fear is courage which is also infectious. ~OC

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Celebrated

Today’s a new day! Go where your celebrated,not where your tolerated. Protect your peace. Always be who you were created to be. ~OC

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The Power of One

Today’s a new day! More importantly, it’s Rosa Parks Day. On December 1, 1955, Rosa Parks changed the course of history with one act. Ms. Parks refused to give up her seat on the city bus to a white passenger, as the unjust law demanded her to do during that time of American History. She was removed from the bus and arrested. Yet her spontaneous defiance sparked the ensuing Montgomery Bus Boycott, a movement of blacks and whites that took shape within hours of her arrest and advanced the civil rights movement across the United States. The boycott lasted 381 days. A time in which black commuters walked, rode bikes, or accepted rides from sympathetic supporters — until a district court ruling declared bus segregation unconstitutional. This ruling was upheld by the U.S. Supreme Court, striking down the practice across the country. And this was just the beginning: the boycott galvanized a national network of support, and created a framework of committed activists, that would form the backbone of the civil rights movement for decades to come. ~OC

“People always say that I didn’t give up my seat because I was tired, but that isn’t true. I was not tired physically… No, the only tired I was, was tired of giving in.” ~Rosa Parks

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