Tag: challenges

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

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My Life With Parkinson’s

Good Morning! I wanted to share a bit of my Parkinson’s experience with you today. I was diagnosed with PD in 2007. The disease is starting to take its toll on me, but I continue to live with an attitude of hope. I originally wrote this in 2019 and updated it the first of 2025.

Today’s a new day! Living with Parkinson’s takes hope, persistence and a strong will to live. Because Parkinson’s never takes a day off. Parkinson’s is a daily battle. In the presence of Parkinson’s, one must have courage, the strength of character, and for me a strong faith.

While there’s life, there’s hope. Each morning when I wake, I do a full-body inventory, thinking ‘Okay body, what awaits us today?’ I remain hopeful that my just-completed sleep has re-fueled my brain and re-stocked my body. Of course that’s on the nights I actually sleep. Cloaked around every fiber of my body is my unwelcome guest named Parkinson’s; however, the day has started anew, and there is much to accomplish. I use hope as an anchor to secure my body and mind against the slowly rising tide from Parkinson’s. There is still time while staying hopeful.

Living with a positive attitude makes a big difference. Before I get out of my recliner, it can be easy to feel sorry for myself. I have Parkinson’s, a progressive neurodegenerative disorder. And that’s the negative mindset Parkinson’s has provided but I try to never allow myself to stay there for very long. There are days that are going to be difficult; yet staying positive and focusing on the plans God has for my life is where I choose to place my focus. I choose to look at my life with a positive attitude. That is completely opposite of how this disease wants me to feel and live.

I have found living this journey and sharing my story has been a privilege of a lifetime. I start each day with a prayer to focus on what plans God would have for me on that particular day. I choose to stay engaged with the everyday activities of life. Things are starting to get much tougher these days, but I make the choice every day to embrace life to its fullest. I remind myself there is much left to accomplish in my life even in the presence of Parkinson’s. I will close with a prayer I lift up to God every morning:

Dear God, thank you for another day. Simply use me today. This is going to be a good day. I remain hopeful not hopeless, positive not negative, happy not sad, and driven not complacent. Thank you for Your strength, wisdom and courage as I walk through this day. Amen. ~OC

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Some Shocking Truth

Good Morning! As I continue to go through some old journals, I keep finding some old treasures. I guess I can title this collection of writings “The Lost Writings of OC.” This was written in 2017.

Today’s a new day! Here’s some shocking truth for some: Jesus is not an American. Jesus did not come to create a blueprint for Americans to be Americans. But it seems as though our identity as Christians has blended with our identity as Americans, where it is often hard to differentiate what value comes from where.

Because in America, we have substituted the freedom that was given to us by God the Father (Galatians 5:1) for false freedom that was established by human fathers. In America, we have substituted the safety and security we have in the hands of God the Father (Psalm 91:1-2) for safety and security found at the hands of human fathers. In America, we have substituted the goal of building the kingdom of God (John 18:36) for building the kingdom of this country. 

Let me be clear: This is not a political post. This is not an anti-America post. But more generally and over the longer term, I’m afraid that our pursuit of what it means to be American has undermined our pursuit of what it means to be Christian.

So the new question I have been asking is, what does it mean to be a Christian in America?

The answer to this question can unlock a freedom that is not found in the question of who is saving America from destruction but rather in the question of who the Savior of my life is (John 8:36). And the answer to this question might actually cause me to lose safety and security for the sake of others finding safety and security in Jesus (Philippians 2:4). Because answering the question of what it means to be a Christian means answering the question of where Jesus is calling me to follow him (Matthew 16:24). 

So for some, this new question will cause us to look at the pain and suffering of those around us with compassion and ask Jesus to guide us in how he is wanting us to engage with lives that look different than ours (Colossians 3:12). For others, this question will cause us to look toward those who have caused us pain with mercy and loving-kindness and ask Jesus to guide us in how he wants us to engage with the lives of those who seemingly oppose us (Ephesians 4:32). But the invitation in asking the question of what it means to be a Christian in America is an invitation to stop looking at policies, people, and parties and to start looking at Jesus.

This American question has divided us, and the world is watching the internal implosion of the Church. But they are also looking for hope. And as long as we are asking the wrong question, we are unable to show them the hope we so desperately desire that they see (Colossians 1:27).

I pray everyone will take the time to reflect on this post. I pray everyone has a beautiful day. ~OC

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Friendships…

The last few days, I have been going through old journals and finding some old writings. Here is one I wrote back in 2019.

Today’s a new day! So many people kick the terms “best friend,” “best friend forever,” “BFF,” or “bestie” around like a soccer ball , hoping the person they kick it to will kick it back at them.  I have no doubt that for some people, the friends they make in their youth stick with them for a lifetime.  But as we grow older, we realize that true friends are rare.

Some friends are here for only a season of our life – school days, college, young married, a missions trip– and then when the ties that bind them loosen, they slowly (or quickly) exit our lives. I do not think this lessens the value of the relationship.  We need various people to learn from and lean on during the different seasons of our lives.

What can weaken a friendship? Two friends may mature at a different pace, or sometimes interests change.  Distance can have a huge impact, if someone moves, or perhaps there’s a complete change in lifestyle. Are there friendships that can withstand any or all of these conditions?

True friendships withstand the test of time and the changes that can put obstacles in the way of a stress-free relationship. That is, it’s easy to be friends with someone who is available, who you have much in common with, and who you agree with on most issues.

I’ve learned that true friendship does not have much to do with what you have in common, though, of course, commonalities are needed, especially since they bring you together. What holds your friendship together is a deep love and concern for the other person’s well being. You care, so you continue to be there for that person.

Friends show up in times of trouble. During my crazy beautiful health journey, I have found out who my true friends are. Who those 3am friends really are. For those friends that decided to move on, I continue to pray for you and only want the best for you.

True friends are honest with each other, and they accept the other person’s honesty. They do not let petty arguments come between them. They forgive each other. They realize that they don’t always have to agree.

True friends give you the freedom to have other friends. They are secure enough to know that if you are a worthy friend, they do not have to do anything to persuade you to spend time with them. They know you have enough love in your heart for all your friendships.

True friends are not difficult to meet up with, and they aren’t hard to keep in touch with, if they live far away. While we all get busy at times, true friends inform each other that their friendship is still important, and both of them make an effort.

Over the years, I have had some friends who pulled out a calendar and listed a handful of dates over the next few months that they could schedule a time to see me. Hmm, I thought, I’m busy too (dying can take up a lot of one’s time), but it shouldn’t be that difficult to find time to spend together. In contrast, I have multiple friends that a quick phone call or text and we are meeting up within hours to catch up.

True friendships are those that bring out the best in you. Your friend should give you energy – not drain it.  How many times have we stayed in relationships simply because the person was present, but deep down we know they aren’t good for us? When possible we should clear our lives of people who drain us and leave space to foster relationships that fill us up with hope and make us a better person.

I believe the mark of a true friendship is intimacy – your friends know and wants to know what is happening in your life. On some level, they stay involved in your life. Indeed, that’s the mark of a true friend.

It goes without saying that to have true friends, we must work at being a good friend.Even after fifty plus years, I am still learning how to be a better friend. I desire to have more friendships that can last the ups and downs of this journey called life. ~OC

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My Room 378 Experience

Today’s a new day! As I sit in my comfortable recliner, in my comfortable apartment this morning, I have been praying and thanking God for guiding me through the last seven days in the hospital. There are still lots of questions, concerns and unknowns, but this early morning I am filled with peace. A peace that no person or circumstance can take away from me.

The past few months I have felt God wanting to have a deep conversation with me, but there was always some distractions that kept that conversation from happening. Then on New Year’s Eve, the last day of 2024, I was rushed to the ER with stroke like symptoms. After ruling out a stroke, the doctors decide to admit me for observation. Little did I know that this would be the time Jesus chose to speak to me. I wish I had the eloquent words to write down what I experienced on New Year’s Eve in room 378 that has filled me with peace, expectation and urgency. (If you want to know about my experience in room number 378, please contact me and I can share it with you). But just like the enemy likes to do, the next few days were filled with challenging moments. But as I sit here on January 7, 2025 at 3:14am, I am choosing to only remember the peace and awe I felt on the last night of 2024.

As I shared above, the experience on New Year’s Eve has filled me even more with a sense of expectation and urgency. Expectation that God is getting ready to do some amazing things, but also the urgency to share, pray, serve and write more. This experience has given me even more of a longing to share everything God has done and continues to do in regard to my crazy beautiful health journey. I want to experience even more of God’s freedom. I want to wake up each morning with delight for a new day.

As I have been up praying this morning, that sense of urgency has become stronger. I so desire for my life to have significance because of what Jesus has done and continues to do in my life. I feel laser focused on living out my days serving Jesus and others. This urgency has nothing to do with checking off a bucket list of some kind. Instead, I feel even more driven to create a legacy that points people to a relationship with Jesus.

During this twenty-two year health journey my priorities changed. My Room 378 Experience has changed me even more. I have never cared about spending money or time on material objects or activities that have no lasting impact on people’s lives. But that desire has grown even stronger. I want to conserve my time, energy, and resources for those activities that will leave an eternal imprint on my part of the world and on those God brings my way. I want to spend even more time in prayer for those I love and for this broken world.

I wake up every morning with a desire to encourage and love on people. I pray through my Room 378 Experience, that Jesus will show Himself through me even more in my little sphere of influence. Jesus put me with all my flaws, talents, life experiences, joys and sorrows, onto this earth for a reason – a purpose that He designed me to fulfill. I seek to savor each moment Jesus gives me to love and live for Him. That is my sense of urgency. It is my prayer every morning before my feet hit the ground that this day my life will not be spent in my own pursuits, but I will be a vessel for Him to touch those He places in my path. ~OC

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Breakthrough

Today’s a new day! Prayer is about a relationship with Jesus. When we pray, we are committing our concerns, our worries, hurts, fears and joys to the One who wants to do life with us. We are spending time talking with Him just like a best friend. We need to stop making prayer a one way street, and grow in our relationship with the only one who will never fail us and who is always there for us. He is calling us to spend more time with Him. So my friend, pray about everything! Did you get that? Pray about everything. There are many scriptures that encourage us to pray.

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” ~Matthew 11:28-30

Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. ~Philippians 4:6

God says commit your plans to Him. He wants us to surrender everything to Him. He wants to carry our burdens. God wants to do life with us. The trouble lies when we try to keep carrying ourselves and then get upset when the changes we are crying out for don’t seem to change, or go our way.

We need to learn to let go…..

So, today surrender your whole heart to Jesus. Give Him your life, your concerns, and worries today. Lay it all before Him and then trust what He is doing. Pray for spiritual eyes to see things His way because it doesn’t always go the way we want, but it’s always for our good when we live in relationship with Him.

Maybe you have found deep hurt after praying, or things went badly and you feel scared to let go. I get it. We have all been there. This can be so hard. But when we realize just how much God loves us and His plans for us are good, everything changes and we find healing. We can find beauty from the ashes. The key is to surrender it all to the Lord. Then trust that God is working it all out for our good.

God never promised us a life without trouble, but He did promise He would walk through it with us. So when life throws you a curve ball or you’re stressed out about the pressures of life, stop and do this one thing. Pray. God really does want us to pray about everything because He cares for every area of our lives.

As we have just started a New Year, I know many are praying about a breakthrough in your life. Here are some things I have learned over the years about experiencing your breakthrough.

1). Spend time with the God all day every day through conversation with Him, with worship music, or just sit in His silence. Listen and read scripture. Taking time to journal everything He is saying to you.

2). Repent. Sometimes we get so caught up in us, we forget about Him, so it’s important to ask for forgiveness when we have lost focus.

3). Surrender your plans for His plans. Sometimes it’s just a perspective change in seeing the blessings in the hardship. Learning to totally depend on Jesus is key to knowing His loving character better.

4). Ask for prayer from trusted and Godly family and friends to help carry you in prayer through this season.

5) Be specific in your prayers. Spend time talking and listen to Jesus telling Him exactly what you need. Rather than just saying Lord help me, pray specifically for what you want or need and pray in Jesus name (there is power in the name of Jesus!)! Pray wherever you are and while you are doing all the things, just like you would talk to your best friend. Always praying. Always in conversation with Him being specific.

Here is a prayer, I hope will help guide you through this season.

Dear God, I am struggling to know what to do and how to persevere in this. but God you need me to depend on you and not on my own strength so help me to surrender this over to you. Please forgive me for not despending on you. Where I am weak you are strong so I will depend on you today, so you show up and its not me. Forgive me for carrying the burdens you never intended for me to carry and I release it all over to you today ___________ (speak outloud your struggles you are battling with today).

I pray this post helps you as God prepares you for your breakthrough. Blessings. ~OC

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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

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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

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Significant Life

Today’s a new day! What is a “significant life?” That is a question many will be asking as we move into a new year. I believe a significant life can be measured by having great worth and value–forged by carefully chosen crossroads leading to the sum of a life well lived. It is a life whose moments are not wasted on the material or ordinary, but excavates the ordinary as sacred because God is there.

I am eternally grateful for meeting God at a early age; that He pulled me close and began to open my eyes to eternal matters–but I regret the times I’ve wandered through the “ordinary” days grumbling and complaining as I waded through the difficult days, and frivolously moved carefree through seasons which could have been spent with more purpose.

As five decades of life are closely coming to a close, 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 do not want to waste another single day of my life. I desire to truly live my life for God until I breathe my last breath. I desire to live all out for His glory–whatever that may look like in this journey called life.

As a young man, I am not sure I took seriously the warnings of the wise men of God, “Don’t miss out on God’s will for your life!” I wasn’t exactly sure what His will was for me, and I am sure at times I missed it. Now that I’m older, His will seems more clear, single-focused, and less complicated. I can sum it up in three words: Simply Glorify Him.

The driving passion of my life is expressed by God in Numbers 14:21:

Indeed, as I live, all the earth will be filled with the glory of the Lord.


But what does that look like? For me, I believe Jesus gives us the answer in John 15:8 “My Father is glorified by this, that you bear much fruit, and so prove to be my disciples.”


As I write this post, emotions are swirling all around me. Tears, Missed Opportunities and Regret to name a few. But one emotion burst through like a ray of sunshine… Hope. That deep down hope that feels me with peace and promises for a great and exciting life. A hope that sustains me through the toughest storms

I want to challenge you to stop what you are doing right now and consider these questions:

Is my life significant?

Am I wasting my God given gifts and talents?

Am I bearing fruit?

What is the driving passion in my life?

How can I best use my remaining days to live out the purpose God has created for me in the remaining time I have on earth to bring Him glory?

I believe the answer to those six questions can lead us to living a significant life. ~OC

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Happy New Year!

Today’s a new day! Happy New Year! Welcome to 2025. Not sure about you, but I look forward with great excitement, wondering what God has planned for me this coming new year. What new opportunities will reveal themselves? What new lessons will present themselves? A new year is full of endless possibilities.

As we gear up for a new year, I believe it’s important to take a little time to reflect on the past year. Doing this I believe helps to view each year as a season, understanding that God is Sovereign and has new seasons of experiences and growth to make us more like Him. I can testify 2024 was full of many different emotions. There were moments of grief, but there were also times of joy and happiness. A year filled with many memories and lessons.

As we take some time to reflect back on 2024, it helps us to remember that God is in total control and that we are constantly growing as His children and that He knows the plans He has for each of us. Plans of new wisdom, insight and understanding that He wants to impart to us, if we will allow Him to.

It also gives us an exciting and fresh new outlook of the coming year and enables us to leave the past where it belongs. Not that we forget the past but learn from it and move forward into our present future with open hearts and minds to receive whatever God has for us.

With that said, here are some ways we can look forward to in 2025.

New Beginnings: Start out 2025 with a fresh point of view of new experiences, opportunities, memories and blessings. Have an open mind and heart to where ever God may want to take you with full assurance and confidence that He is always with you. (Matthew 28:19-20)

New Possibilities: There are no limit to what God can do in your life and nothing is impossible with God. God opens doors that no one can shut and also closes doors that no one can open. The possibilities are endless with God. (Philippians 4:13)

New Plans: We walk into 2025 like a blank canvas. Be in prayer for what God has planned for you and be willing to walk by faith in obedience as you follow His leading. Remember that His plans are always for good and not for evil to give you a future and a Hope. (Jeremiah 29:11-13)

New Purpose: As you look ahead, God always has a plan and a purpose for what you will go through and experience. Remember that God always has a reason for what He allows in your life and through it you can trust Him completely. (Proverbs 1:3-5)

New Provisions: The Bible says to not worry about tomorrow for tomorrow has enough worries of its own. In 2025, trust in God who knows everything you need. He is our Hope and our Provider. God is faithful and He will do it. (Matthew 6:1-33)

New Growth: When we are willing to let go and let God work in and through us, He will always stretch us and grow us. It is an important part of the growth process. I pray we will all continue to grow in our relationship with God and in His Word. In 2025, allow God to mold you and make you pliable in the potters hand and then watch the master craftsman work in your life in amazing ways.

New Wisdom: With new experiences and new lessons comes new wisdom and insight. Always make it a priority to seek out wisdom as hidden treasure or fine gold. In Proverbs it says that it will be like a garland of grace around your neck and honor you and present you with a crown of splendor. (Proverbs 4:7-9)

Renewed Peace: As you go through new experiences and new adventures whether they are good or bad, my encouragement is to keep your eyes fixed on God and He will give you rest and peace, because He is our peace and loves us and cares for each of us deeply. (John 16:33)

As we spend some time in reflection about 2024, let us give thanks to God for getting us through another year as we look forward to what He has for us in 2025 and praise Him that He is faithful and worthy to be praised. ~OC

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