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

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

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

Challenges of Life

Today’s a new day! The challenges of life can leave lasting marks, but that does not always have to be a negative. Sometimes our biggest struggles bear the richest harvest and beautiful unexpected opportunities. These challenges can give us a small glimpse of God’s beauty, design and purpose in ways we could never imagine. ~OC

Not the End

Today’s a new day! Sometimes a tragedy can provide a platform for something greater. Something beyond our wildest imagination. Sometimes a tragedy can be the beginning of something beautiful, not the end of the story. ~OC

Peace! Be Still

Today’s a new day! Remember in Mark 4:39, the disciples are frantic because of the raging winds and seas. But what does Jesus do? He arose from a sleep and commonly stated “Peace! Be still.” In that moment, Jesus wasn’t just talking to the storm- He was also speaking to the hearts of those in the boat. Remember that the next time you experience the raging seas in your life. ~OC

Never Give Up

Today’s a new day! Life can be hard. There are times when we feel like giving up. The weight and challenges of the world can feel overwhelming. But never forget, you are stronger than think. We read in Philippians 4:13, that we can do all things through Christ who strengthens me. This isn’t just a feel good verse; no it’s a promise. No matter how hard life gets, you have the strength to keep moving forward. Every challenge you face is an incredible opportunity for growth. The journey might be hard, but it’s forming you into a stronger, more resilient version of yourself. Keep moving forward, even when life is difficult because every step forward brings you closer to your breakthrough. To your purpose in life. Keep holding onto hope. Keep the faith and the strength that you were created with. Remember, you have what it takes to keep persevering. Better days are ahead. Do not miss the lessons during the tough times of your life. Never give up! ~OC

A Life of Significance

Today’s a new day! What is a “Significant Life?” I think it is one which can be measured as having great worth and value–forged by carefully chosen crossroads leading to the sum of a life well spent. It is a life whose moments are not wasted on the material things of life, but lived out in a way that is pleasing and glorifying to God.

I am eternally grateful for meeting God at the age on ten (Unfortunately, I did not always live for Him in those early days). But at an early age God pulled me close and began to open my eyes to eternal matters–but I regret at times I’ve wandered through the “ordinary” days, grumbled and complained as I trudged through the difficult days, and frivolously skipped carefree through seasons which could’ve been spent with more forethought and purpose.

As the decades of life are quickly flying by, the brevity of life as described in Psalm 90 bears heavy on my heart and one thing I know: All that matters is living for Christ.

I don’t want to waste another single moment of my life. I desire to bear fruit for Him until my last breath is taken. I desire to live all out for His glory–whatever that may look like in this crazy beautiful health journey.

As I write these words, I reflect back on the wasted moments, days, opportunities for fruitfulness–but I have hope for those which are before me.

I want to challenge you to spend some time reflecting on the following questions:

*Am I currently living a life of significance?

*Am I using my gift of time wisely?

*Am I allowing something other than God to drive my passion for life? ~OC

Standing Beside You

Today’s a new day! True friendship and good character is all about how a person nurtures another person when they are vulnerable and can give very little in return.  Thus, it’s not who’s standing beside you during good times, but the ones who stick by you through tough times that are your true friends.

So take note of who remains in your life when times get tough, especially the people who sacrifice the resources they have in their life to help you improve yours when you need it most.  Seriously, when you come out the other side of a difficult period in your life, look around you. The people still standing beside you are your true friends. ~OC

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