Tag: Community

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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Merry Christmas

Today’s a new day! Merry Christmas!!!

Finding the real joy of Christmas comes not in the hurrying and the scurrying to get more done. We find the real joy of Christmas when we make Jesus the focus of the season. Born in a simple stable, cradled in a manger, He came forth from Heaven to live on earth as a common man and to establish the kingdom of God. His glorious Gospel reshaped the thinking of the world. He lived for us, and He died for us. What can we, in return, give to Him?

Our lives! May our hearts be full of peace, love, grace and forgiveness on this Christmas Day…. and every other day. May our lives be one of service to others.

May we all remember the true meaning of Christmas and celebrate today in a way that pays tribute to Jesus and the sacrifice He made for all of us. 

I want to wish each of you a very, Merry Christmas full of love and laughter and family and friends and wrapping paper, presents, good food, and a day full of happiness and joy. I pray each of you experience whatever Christmas miracle you have been praying for. And may we all remember the person whose birth we celebrate today, Jesus Christ. ~OC

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The Empty Seat

Today’s a new day! As I wake up on this Christmas Eve, my thoughts turn to those walking through hard times this holiday season. On this day before Christmas, some are experiencing their first Christmas season with an empty chair at the table.

This year like so many, I have experienced the loss of loved ones.

The loss of a parent, grandparent, spouse, sibling, niece, nephew, friend or the tragic loss of a child creates a hole begging to be filled and a seat at the table that will remain empty.

At times these precious family members may feel deserted. By God, by life, by family and friends who don’t know what to say, so they stay away.

So what do you do for someone who is grieving on what should be one of the merriest days of the year?

I pray the following helps.

1) Your presence and words matter

Saying I can’t imagine…

Nothing more. Nothing less. Those words embrace them, their loss, and their pain, showing you care. Deeply. And you are there, for them, with them, regardless of the pain it causes you to share in theirs.

When we add words after I can’t imagine, we are likely to add our own emotions, thoughts and feelings. Just simply acknowledge their feelings, pain and loss.

I can’t imagine…yet I care. Simply be with them.

2) Say the name of their lost loved one. Hearing the name of that precious person matters and makes a difference in the healing process. Avoiding speaking the name actually hurts everyone there, so share stories, cry and laugh as you recall the amazing life of a loved one.

So say their name…

3) Pull out the pictures! Sometimes the best gift and step to healing is going through old photos or videos. The gift of beautiful memories. Never letting their life be forgotten.

He comforts us. He heals the broken hearted. God is good, even when situations are not, God is. ~Psalm 56:8

He heals the brokenhearted and binds up their wounds. ~Psalm 147:3

So pull up a chair to the table, set a plate and name card for the one who is no longer there and let the stories and memories flow.

Let us honor the ones who have simply gone before us to where we want to be when it’s our turn – dancing and praising in the presence of Jesus.

There is hope in the midst of the sadness. We will see our loved ones again and that is worth celebrating.

On this Christmas Eve, I am thankful God sent His one and only Son Jesus to pave the way for each one of us who love Him. Yes, we miss the ones who have gone before us and left their seat at our table empty, yet we celebrate they are in Heaven. Seated with Jesus at the Heavenly Christmas Table. ~OC

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Rocket Launch

Today’s a new day! Here is a rocket launch from earlier this morning 12/23/24, as seen from our balcony in West Palm Beach, FL. Have a wonderful day! ~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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Life Takes A Village

Today’s a new day! As the holidays are just a few days away, I encourage everyone to not forget about those loved ones going through loss this season. Whether the loss of a loved one happened a few days ago or decades ago, the pain is still real. Going through the grieving process can be a very dark and difficult time for a person. However, it is also hard for the loved ones of this individual. Family members and friends often struggle to find the best ways to be supportive. Plus, the holiday season can make this process that much more challenging.

If you are the loved one of a grieving individual, understanding the stages in this process is an important place to start, but there are also many genuine things you can do to show your love and help.

Reach out to them. Most grieving people find it hard to take initiative and reach out to others. You can help by doing this for them. Stay connected with them via visits, phone calls, text, email or video chat. Make sure you are still checking in on them in the months following their loss, when fewer people are doing so.

Find ways to help. Come up with specific tasks you can assist with. Volunteer to drop off pre-made dinners so they don’t have to worry about cooking. Check and see if you can run errands for them. See if there is any house or yard work they need assistance with. Maybe they just need you to sit with them.

Don’t be afraid to say their name.To share stories. Those grieving can be concerned that their loved one will be forgotten by others. Therefore, don’t be afraid to mention the loved one’s name and to share stories about the person. Those stories may bring some tears, but they could also bring some much needed laughs.

This holiday season will be tough for many this year, so take the time to reach out to them and let them know you care. Life takes a village. ~OC

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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

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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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God is so Good

Today’s a new day! As Laura and I have traveled this crazy beautiful health journey, we have continually declared “God is so good to us.” It isn’t about material wealth or any signs of success. Laura and I live a very simple life. But some of the greatest blessings in life are not the ones you can hold or see, but the ones you carry in your heart. ~OC

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