Today’s a new day! As I continue to run this crazy beautiful health journey, there are more questions than answers. No promises that things will get easier or better, but I am still filled with a peace that passes all understanding. ~OC
A Friday Prayer
A Morning Prayer. ~OC
Dear God, I pray that you would give us the boldness to speak out against hate, especially when we see it in our churches, communities and homes.
Dear God, I pray that you would give us the humility to admit where we have chosen the way of the world over the path of Christ.
Dear God, I pray that you would encourage us to step away from behind the glowing shield of our screens to have real conversations in which we look into the eyes of another, witnessing the image of God that dwells within them.
Dear God, I pray that you would remind us that time is a precious gift that should not be wasted on things that divide us, but instead we would use the gift of time to encourage and build people up. To be our neighbors biggest cheerleader instead of their judge and jury.
Dear God, I pray you would teach us to live with a heart of service. Teach us to live with less so that everyone has enough.
Dear God, I pray you will move in your Church. I want her to thrive. I pray 2025 will be a year of repentance and revival for the American church.
Today, I pray you will join me in lifting up these prayers? Amen
That’s What Friends Are For
Based on my earlier post, several people reached out to see what they could do or what I might need. As I continue to move through this new phase of dementia, there are plenty of tools and games to try and keep my mind sharp. Some of them help and some are still in the testing phase. The one thing that has proven to help, is visits and phone calls from friends. So when people asked me how they can help, I encourage them to call or visit. So I will leave the ball in your court on how you choose to respond to this post. Please know I am always praying for you. I pray everyone has a beautiful weekend. ~OC
Welcome to February 2025
Welcome to February 2025! Several people have inquired about my health the past few days, so here is a quick update.
My body continues to slow down. I am sleeping the majority of the day the last few months. The doctors believe based on some recent infections, my neurological issues have gotten much worse. Harder for me to get around these days. This past Monday, doctors believe I had a small TIA (mini stroke). Thankfully I was not hospitalized. Sadly, my dementia is further along than first thought. Of course that could have been caused by the multiple infections and procedures I had towards the end of last year. The doctors have decided with the complex headaches and further risk for a stroke, that it’s not a good idea for me to be driving. I must agree. So this past Monday, we sold one of our cars and are happy with the one car we have.
I do not look at this as a sad time in my journey. I choose to look at all the amazing opportunities that are still in front of me. So I will continue to wake up every morning with gratitude in my heart and give God thanks for another day of life. Physically and Mentally, life is much harder these days, but honestly I would not trade my life and all of the beautiful moments I have experienced and will continue to experience. Laura and I are at peace.
My prayer for each of you, is that you will embrace every moment of everyday and find some sunshine among the clouds. ~OC
Life with Myasthenia Gravis
Good Morning! More writings from the “Lost Writings of OC.” I thought I would share a little bit about my Myasthenia Gravis (MG) experience with you today. I originally wrote this in 2024 and updated it several weeks ago. As I share this with you, my MG is getting much worse.
Today’s a new day! Myasthenia Gravis (MG) is an autoimmune disease that causes muscle weakness. But what exactly does muscle weakness feel like? To understand more, let me walk you through a typical day with MG.
For me it feels like I’ve run out power. In general, I feel it’s a huge effort to move when I’m very weak. When my legs are weak, they feel heavy and unsteady. I feel like I cannot move them or trust them to hold me up. The weaker I get, the closer and closer my steps get to each other, until I have to stop and lean against something or just sit down.
Also, I get pain in my hip flexors – basically my butt. It’s the same kind of pain you get from overdoing a workout: an achy soreness that feels like you have overused the muscles. These days, I deal with hip pain on a constant basis.
When my shoulders are weak, which is most of the time lately, I feel like I just cannot lift my arms. Like there are heavy weights holding them down.
My neck continues to get weaker. I just cannot hold my head up. It falls to the side or down, or I have to prop it up with my hand on my chin and my elbow on a table, or with a U-shaped neck pillow and a high-backed chair. As my neck weakens, I develop achy pain in my upper back from trying to hold my head up. I sometimes get a nauseating gagging sensation from my throat collapsing.
Eating with MG can be a challenge from having to take breaks while eating, to choking on solids and fluids. Sitting down to eat or drink is a major undertaking. I also start to slur my speech, and I get short of breath from minor exertion, or sometimes just sitting still.
I always have muscle weakness, but it gets more severe with heat, exertion, lack of sleep, infections, or other stressors. Summertime can be very challenging. Extreme cold is not my friend either.
Based on my weakened lung muscles, I am unable to take deep breaths. This causes issues on so many different levels. These days, every breath is a struggle.
I have to stay on top of my medications for the Myasthenia Gravis. I have to take one of those medications four times a day. Oh, I better not miss those dosages or things can go down hill pretty quickly.
I try to dress in cool fabrics and wear layers in winter. And I try to protect myself from sickness by keeping my vaccines up to date, wearing a mask when needed , and using hand sanitizer or washing my hands frequently when I am out of the house. I tend to fist bump and avoid shaking hands or hugging.
You know how much I love to walk, but that is getting harder these days. I have added a walking stick to help with my balance. This is a far cry from my marathon days
My medical team continuously tells me I am a one in two billion case with all of the multiple diagnosis. With Myasthenia Gravis, I fall into a small group of people being diagnosed with MG after having their thymus removed. My cancerous thymus was removed in 2003, but I was not diagnosed with MG until 2009. I will not go into what the thymus does, but feel free to research on your own.
How friends loved ones can help
One thing my friends and family do for me that’s immensely helpful is helping to educate themselves on Myasthenia Gravis so they can explain it to others and better understand my daily challenges.
I only have a few people besides my bride, who truly know me and my MG that well, but they are lifesavers. They’re also the ones I’ll talk candidly to when my MG gets me down. I cannot be relentlessly cheerful all the time, but I try.
I hope this gives you a better understanding of what Myasthenia Gravis looks like and how it affects my life on a daily basis. Each day is a struggle, but I continue to push forward and look at all the positives in my life. I encourage you to do the same. Go have a great day! ~OC
Dear God, Sometimes the pain is so great, I cannot think beyond my current struggle. On hard days, please ease my pain and help me focus on Your goodness one day, one hour, one moment at a time. Let Your overwhelming peace wash over me and remind me Your mercies are new every morning (Lamentations 3:22-23). There are days when I beg you to take the pain away. Days I just don’t have the strength. In those desperate times, I ask for Your unending strength to sustain me. I cannot do it alone, but with You all things are possible (Matthew 19:26). Amen
Believe Me…The Suffering Is Worth It
Today’s a new day! I’ve grown comfortable in my wilderness moments. The ups and downs of this crazy beautiful health journey is a place I no longer fear. I know how to operate here. I know how to encourage others that are walking through their own suffering . Because when you walk through enormous trials and God continues to show up in huge ways, you become changed by it. When you stand by people in places that conjure up feelings of death and God’s love swarms around you like it has in no other moment, you start to see even the worst pain differently. You start to see the beauty. The beauty that can be present even in suffering. That amazing message that I will never stop proclaiming because I believe in it with every fiber of my being. That God is present with us in the pain and the suffering of this world. And that He can use everything–absolutely everything–for our good and His glory. Even when it isn’t good in those moments of despair. Even when it feels like a million shades of awful. But remember, this wilderness place is never where our story end.
It’s a question that I have gotten a lot over the years, but I wonder if people actually really want the answer. The question is How could God allow me to walk through so much suffering? This is how I choose to answer that important question. Having a relationship with God and following Him for many years, I see more of His character each day I walk through this pain and suffering. I have experienced God’s outrageous love that has come through for me over and over and over again, in this long and winding road of suffering. I truly believe His ways and His timing are best for me. Let me ask you a few questions. Do you truly want an intimate relationship with God even if it means that enduring pain and suffering is part of the process? If it strips you of pride and idols and all the baggage that just continually brings us down? During my long health journey, I have learned that most people see the world through narrow eyes. They only see the temporal things. They see just what is in front of their face at any given time. And often what is staring back at them is so overwhelming–how could they possibly see anything else? But we have to look at the full picture standing in front of us. We have to think about how our stories ultimately ends.
Our God who gives us the choice of whether or not to love Him–because could we truly love Him if He didn’t give us that option? God is too big to accept that kind of response. He wants us. All of us. God wants us to love Him for who He is because He already loves us for all of who we are. And with the option to love Him also comes the option not to love Him. To go our own way and forge our own identity. We all have a will to choose, and we all at different points choose the wrong thing. And the world is broken and full of pain and how do we even begin to reconcile it all? How do we reconcile that God is still good? He promises to be our God. Our deliverer. Our Savior. Our refuge. Our strength. God promises that we are held safely in His everlasting arms. So why doesn’t He move those enormous mountains in our paths? Why does God sometimes make us take the slow and grueling climb to the top? The climb that eventually leads us up to the steepest peak where we can look below and see the landscape that was always there, but was just always over the next rise. The view that allows us to take it all in–the whole journey. To see both where we have come from and where we are going. The reality is, God doesn’t remove every single mountain in our path. He wants us to climb them. He wants us to put one foot in front of the other and feel our muscles trembling with every single step. We feel like we are drowning in our struggles and our sorrows and we cry out to Him for rescue, and the waves just get stronger. We forget that He already parted the seas for us. That our lives are not measured from one circumstance to another, but from His Son making the way for us and the forever that still awaits us. That there is another side to the mountain that we are climbing and the narrow road we walk is so much shorter than we could possibly believe. Every single step up the steep road strengthens our bodies and minds to continue the walk home. It can be hard, and it can be painful, and at times we fall over and feel like we could not possibly take another step. But it’s still the amazing road home. Will we make the choice to choose it anyway? Are you going to choose a road that is full of pain and sorrow and hurt? Because God shares throughout scripture, that suffering is part of the path. That suffering will always be a companion on our journey. That in this life we will be hated and slandered for God’s name and that by signing up to walk His way, we are signing up for some struggles and heartbreak. But would He ask this of us if it wasn’t worth it? Evil is running rampant throughout this world. This world can be full of so much pain and sorrow, and it is far too much to bear on our own. There are people all over the world struggling with more than we could possibly imagine, and why does God allow it? But would we know His goodness if He didn’t? Because there is a difference between allowing something to happen and condoning it. Approving of it. And if you spend anytime in God’s word, you will know that He so wholly and completely disapproves. He doesn’t like it anymore than us when we are faced with a huge mountain to climb in our journey –but He will use it. God will redeem it. He will show up and walk the road with us. Because God is good, and He wants the best for us. He can see more than we can and sometimes that means the hard road. Sometimes the hard road is the only road.
Evil is very real, but if we just focus on that part of life, we are missing the whole point. Because evil and wickedness don’t just offend God, they stand in complete opposition to God. He opposes it in every way–His perfect righteousness cannot stand for it. And He will get the final say over it. Ultimately, God will show just how much He does not approve of it. And the fact that God delays to set this world right is actually a mercy–it gives more time for people to come to Him. To choose Him. To take hold of the freedom that He gave us in the garden that we took and totally screwed up. Because as hard as it gets and as ugly and painful as the world may seem, God would not allow anything into our lives unless He knew that one day it would be worth it. That it is worth it when God leaves us in our tragedies. Because when He wages war on all that is evil, the fruit and beauty of our pain will be more than we could possibly imagine. The tears will turn into complete celebration because we will see–we will see what it was all for. Every sacrifice, every sleepless night, every painful moment and the utter senselessness of tragedy. Those very things will become our joy. We have to remember the full story. We have to remember that where we stand right now in this moment is not where our stories end. That our journey began in a garden full of promise and that the freedom that God gave us to love Him and choose Him, we took and turned it on its head and still He comes after us and promises to set it all right. God constantly gives us way more than we can handle, but He can. There is no situation or struggle that we walk into that catches Him by surprise. Including suffering. Including the worst of the worst. Including the darkest and loneliest nights. God is there. He never leaves us. God has already won. And the moments of our journey that we spend in the deep, shape us and allow us to become more like Him in the process. Because God would not lead us straight into the fire without knowing that it was worth it in the long run. And that is the beauty of it all. That as we step further into the darkness of pain and sorrow and still trust God in it, eventually He turns it all to light. The trials that turn into a testimony and a journey that becomes more than us being stuck in an impossible situation, but becomes about our Sovereign God and His strength and power that overcomes it. The deep that we despise becomes light for others walking their own path. The storms we walk into blaming God for and walk out of praising His name.
Remember, God has already won the war and is coming back to finish the final battle and get the final say over all the injustice and ugliness of this world. I, for one, would not have this deep relationship with God without the pain and suffering. Without walking through struggles. The darkest moments of my health journey have led me directly into His embrace. The storms that God allows even in all their heartache because He sees what we cannot see yet and knows that one day even we will find worth and meaning in those darkest moments. So the question becomes are we going to stand with God or against Him? Seeing the world as it is today and knowing what we know, are we going to choose God anyway? Even when all the pain and suffering doesn’t feel worth it, are we still going to trust that it is? Will we run straight into the deepest sea if it is the only way to get to God? Because over the steep rise of that mountain peak, there is beauty beyond measure. And just because we cannot see it yet does not mean that it is not there. Just like how the stars still shine in all their brilliance in the light of day, but only in the night sky can we take them all in. It is there. All the beauty and wonder and joy of our struggles. It’s at the end of this short and sometimes rocky road in the forever beyond. Believe me, it will be worth it. ~OC
“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” ~Isaiah 41:10
“God is our refuge and strength, a very present help in trouble.” ~Psalm 46:1
“Never will I leave you; never will I forsake you.” ~Hebrews 13:5
“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” ~Romans 8:28
“Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” ~Psalm 23:4
Year of Reunions
Happy Friday dear friends! As I continue to run this crazy beautiful health journey, friendships continue to mean more to me than ever. I love when I am able to connect with the friends I have been blessed with over the decades.
As I have walked through this health battle, I have been to many funerals. It’s just part of the journey. At those funerals, many people gather to pay their respects, talk about how much the person meant to them and reflect on the good times. I often hear people share if they would have only had more time to share everything they wanted to share with their loved one or friend. Oh, do not forget about all the flowers. So many flowers.
As I thought about the above scenarios, it made me realize I do not want that to be my story. People gathering after I am gone and wishing they would have visited more or shared something with me. So here is my crazy idea for 2025. To everyone who calls me friend, let us all commit to getting together once a month to hang out and celebrate each other. Of course I realize some people would not be able to make every month, but if you could make it to a few gatherings throughout 2025, I would be forever grateful. For those that might not be able to make any of the gatherings based on geography, I propose we commit to meeting on Zoom once a month. No excuses for not being able to connect and share life together. We could even plan individual monthly phone calls if that works better for you. Based on my health, maybe we could do a few “Road Trips Reunions.”
As my health continues to decline and I deal with the new diagnosis of dementia, spending time with my friends becomes more important each day. So if you would be interested in making the “Year of Reunions” a reality, please let me know. We still have time in January to kick things off. Nothing fancy. Just friends getting together to celebrate friendships. Oh and no flowers required. Have a wonderful day. ~OC
Guiding My Steps
Today’s a new day! I am thankful as I have run this crazy beautiful health journey, that God did not reveal every step, bump, pothole or curve along this twenty-two years and counting health journey. I cannot imagine how I would have lived out this race, if I would have known how long the journey would be and all that I would have to endure. Knowing the whole story in advance would have been overwhelming. God may not have shown me every twist and turn of this health journey, but He has guided my every step. And as I have leaned into His promises, I have been amazed at everything God has brought me through.
My life and journey has not been about perfection. I have found that one of the keys to living out the toughest moments in life is my daily commitment to serve God in my words and actions. God will never abandon me as I continue to run through the bumps in the road of this health journey. There will be better days ahead and God will be with me every step of the way. ~OC
LORD, you are my portion and my cup of blessing; you hold my future. The boundary lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance ~Psalm 16:5-6
Be Your Own Best Healthcare Advocate
Today’s a new day! I have been what my bride calls a “Professional Patient” for almost twenty-three years now. During this journey, I have encountered health professionals who appeared to be more concerned about egos and status than they did my well-being. For some medical providers, I was just a name on a file who happened to have very good health insurance coverage. They knew more than me because they had the title of Doctor attached to their name. Being so foreign to how the world of healthcare worked, Laura and I just went along with whatever the doctors or medical professionals directed us to do. They’re the professionals. They know what’s best for me. Right? In the famous words of Lee Corso from GameDay on ESPN, “Not so fast my friend.”
As Laura and I began to navigate this new world called the healthcare system, we found out that the most important voices were our own. If we did not stand up for my medical needs, who else would? That’s when we realized we needed to become not only our own healthcare advocates, but we needed to help other patients walking through their own crazy beautiful health journey. We recognized being a “Professional Patient” was actually a full time job.
Over the years, we have had to privately and sometimes publicly voiced some of my medical concerns. Which is not naturally part of my DNA. Or so I thought. But this is my life and my health we are talking about. As Laura and I have weaved our way through the world of health challenges, here are some of the most important pieces of advice I believe I can offer for those walking through their own health journey.
* Do not wait to speak up and share your thoughts and concerns. You know your body better than anybody else. If something doesn’t feel right or sound right speak up. If your medical team truly cares for you they will welcome this dialogue.
*Do not be afraid to get a second or third opinion. This is your life. We only get one.
*Do not be afraid to change doctors or hospitals if needed. Find a medical team that you truly feel has your best interest at heart.
*Have a great support system that can speak up on your behalf when you are unable to.
*Never stop learning about new treatments and medications that pertain to your health issue. Do not hesitate to share that information with your medical team. Once again, if your medical team cares for your well-being they will welcome those conversations.
*Take the time if your health allows, to help someone else navigate through this overwhelming healthcare system .
*Remember, it’s called practicing medicine for a reason. Your doctor and medical staff are human. Mistakes can happen. Allow those to be a teaching moment for all parties involved. Be kind and respectful, but firm.
*Be patient with yourself and your medical team. The healthcare system can be messy, stressful and complicated. Do not be afraid to show a little grace to yourself and others.
I really hope this helps someone navigating through a maze called the healthcare system. Be Your Own Best Healthcare Advocate. ~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
The Blessed Overcomer 