M.S. Awareness Day and What I Don’t Really Want You to Know

 

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Today is Multiple Sclerosis Awareness Day. To be honest, a part of me does not want you to know everything  I experience. Some of you, my friends, have Relapsing Remitting M.S. and some may only have a few attacks in your lifetime. I am so thankful for those who have that experience.  Others of you deal with your own battles in the trenches, M.S. related or not.

I happen to be one in the 10 – 15% of M.S. patients that have Primary Progressive. So, in spite of being only thirty eight years old my body has been aggressively attacking itself for over eighteen years. I did not get a diagnosis until at least twelve years into the attacks. I can relate to feeling like an elderly individual more than I can to a woman in her thirties. Yeah, sure, it is hard to believe. You see my size 6 body, my appearance somewhat neat and orderly and my rather large smile. I love to smile and love to make eye contact. It is sure hard to believe something is wrong.

What you cannot see is the inner battle of the constant unknown. Seasons, and temperatures, stresses, sounds and lights, almost anything can change my ability to move, ability to think clearly and so much more.  I have been doing amazing since beginning the Immune Therapy. I have been able to drive, stand up for longer periods in the kitchen, clean a little more and I am more emotionally stable but nothing is normal. Touch and I have a love-hate relationship. I love to hug and show physical affection but to hold my hand for long or rub my arm or leg can cause pain, numbing, and spider crawlies up and down my whole body. It’s a load of nerve craziness. Sexual intimacy is wonderful and still a priority with my spouse but it is like a delicate dance. I am fragile and can easily be injured. It is wonderful and exhausting.

          I may be walking well when you first see me and as soon as the sun is shining on me, my body warmth increases or any other number of irritations or stresses come my way I may be fighting to lift my legs and I may show signs of instability.   You might not be able to tell  unless you can read me really well. On my harder days and seasons, it is all over my face and body.  Keeping my legs strong has helped me to keep moving but strong muscles cannot totally overcome a nervous system that won’t send messages. My arms are strong because I exercise but holding them up to clean a window can cause incredible discomfort.  Something so simple can wipe me out. I actually enjoy cleaning so this is not something I like to hand off to other people. 

Struggles with my bladder and bowels have been going on since I was a child. It has only gotten worse over the years.The immune therapy and some natural aids  have enabled me to have normal bowel movements. Without the medicine my system is sluggish and what should be normal for a woman who eats as clean as I do, is nothing like normal.

Sleep is a battlefield too. Falling asleep is difficult when spiders are crawling up my legs-at least that is what it feels like. I use Cedarwood oil to ease that and it works. I wake up from sleep feeling like someone is pushing different parts of my body down into the bed-it’s really just heaviness from the warmth of my body. Pain pierces parts of my body and wakes me up. While on the Immune Therapy sleep comes, pain disappears and I awake much more rested.

M.S. hug is not a friendly name. It is really a horrible feeling. It may be around the knee or leg for me but more often it feels like someone has tightly wrapped a bandage around my ribs  and pulls it tighter and tighter and then loosens it just long enough to make me think it is done. At odd times it constricts making me feel like I cannot breathe. It can stir panic and fear and I have to choose to breathe deep and think calming thoughts of truth.

Oh, there is much more but really, I don’t want you to know everything. I just want you to know enough to pray that my immune system no longer attacks itself (which I believe we have accomplished  with the Immune Therapy-I will share an update on that later). I want you to pray the inflammation settles in my body so I do not have to live on this medicine. Most patients only have to be on Infeperium for a short period.  And please do not assume you know how I am doing just because you see me walking, smiling and appearing normal.  Normal has been stolen away from me by the dysfunction of my own body. I don’t really want you to know that I am insecure and sometimes worried that people think I am lying or misleading. I am learning to not be so worried about what other people think. I cannot always be reliable because I just do not know what tomorrow holds for me but those who truly know me and truly love me know I am sincere. I cannot worry what others think.  I am choosing to live for God and God alone.

If you want to know more about M.S. feel free to read this article that the Mayo Clinic  created.  

Please pray for all M.S. patients. Being diagnosed with a supposedly incurable chronic illness is very scary. Pray they make healthy changes so they can thrive and possibly correct their immune dysfunction early. Pray for their minds to think on things that are good, true and lovely. Pray for healing in the body, mind and spirit.  Pray they know the eternal hope of Jesus Christ. We have eternity to live without pain and trials. This time on earth is minimal in light of eternity. M.S. is not a death sentence but it can definitely change the person who battles it for good, better or worse.

“Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary , but what is unseen is eternal.” 2 Corinthians 4:16-18

Praying for you today,

Charise

I Have Been Believing Lies, Have you?

Last week was shadowed by darkness, heaviness pressing in, constricting and it was a battle to see the light. It was a battle to see how any good can come of my pain and discomforts. I had to quiet my heart, mind and body and look into God’s word and allow God to show me the lies I have been believing and wallowing in. I did not think I had this problem but it required sitting quiet with God and truly asking Him and then allowing Him to search me and show me.  The enemy is sneaky and He twists truth so it is easy to fall into deception. I didn’t think I was believing lies. You may not as well.

Here are a few of the lies I have been believing. There are more but those are between the Father, myself and a few trusted people to hold me accountable.

Lie #1 I am not as lovable if someone has to constantly take care of me.

Truth-The people who love me will be willing to care for me. My attitude can make that experience good and enjoyable or it can make it more difficult. I make that choice.

Lie#2 Your value is in all that you do to keep your home running and educating your children.

Truth: My value is great because I am created by the Living God who loves me and breathes life into me. I am valued because I am His creation and His son died for me to cleanse me of sin so I can be with Him forever. That sacrifice was not because of what I do or don’t do. It is not dependent on how well I manage my home or keep my house clean or home educate my kids. My value is not dependent on using my legs or arms or looking nice. I am valuable because the Creator of the Universe made me valuable and calls me His own. If I can’t do anything on my own I will still be valuable.

#3 You are a failure.

Truth: I like to have things perfect. I like to have things “just right” but I am not a failure because I am not perfect and I am not a failure because I mess up every.single.day. in one way, shape or another. Jesus is perfect. He is the only one and His grace is sufficient to uphold me. And His grace enables me to offer grace to other people.

Lie#4 Your life is dwindling away.

Truth: Though my body is fading daily, my spirit is being renewed day by day. (2 Corinthians 4:16) I can still thrive no matter what my outward circumstances because God is my strength. (Phil. 4:13) He is upholding me.

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In calling out the lies and replacing them with truth I  can feel the loving arms of God engulfing me and lovingly pulling me out of the blinding storm. He reminds me to hold on and hold onto hope. He will not let my pain go to waist.

I know His plans for me are for good and I can trust what He allows to be used for eternal purposes and I will continue to believe Him for miracles even when I cannot see the possibility of it before me.

The Father has been faithfully reminding me of the power of my thought life, the power that my mind has on my brain (look into Dr. Caroline Leaf if you want to know more on that) and the scriptural truth in guarding my thoughts well. Knowing the importance does not make it magically easy but it does remind me that  I CAN choose where I allow my thoughts to go.

“For though we live in the world, we do not wage war as the world does. The weapons we fight with are not weapons of the world. On the contrary, they have divine power to demolish strongholds. We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ. ”  2 Cor. 10:4-5

“Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is-his good, pleasing and perfect will.” Romans 12:2

And lastly, a treasure the Father gave me. It is speaking of Abraham. Abraham had received a promise from God that he would become the father of many nations and he was an old man and the promise had not come to fruition. His wife was old and past child bearing years but this is what scripture says.

Abraham “believed-the God who gives life to the dead and calls things that are not as though they were. Against all hope, Abraham believed and so became the father of many nations, just as it had been said to him, ‘So shall your offspring be.’ Without weakening in his faith, he faced the fact that his body was as good as dead– since he was about a hundred years old- and that Sarah’s womb was also dead. Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised.”  Romans 4:17-21

The reality is: I have an autoimmune illness that has attacked the protective layer of my nervous system and has caused major hindrances in signals getting from my brain to my body and my body to my brain. It is painful at times in a hundred different ways and it is inconvenient in a whole lot more. The disease could continue progressing and it could transition from Primary Progressive to Secondary Progressive and that feels scary BUT ….

Truth: I have a God that is bigger than any immune system and I believe He can heal me. I have also been told by three different people that God has told them I will be healed. I trust that no matter what timing that may be I will one day be healed. I believe He will strengthen me and heal the damage in areas of my brain and spine so I can continue doing what He has called me to do. I believe He will use this trial for good and I can have joy in the midst of the pain. As a matter of fact, I can know His faithfulness in the midst of this journey and I can continue trusting His love for me because nothing can separate me from His love. He is the God who gives life to the dead and calls things that are not as though they are so I choose to believe that He will speak life into my nervous system and restoration through my body.

The reality stares at me in the face but I do not walk by sight, I walk by faith. (2 Cor. 5:7).

What lies have you been believing about yourself or your loved ones? What deceptions of the enemy have kept you from moving forward and walking in victory?  Are you allowing your circumstances or what you “see” to dictate how you view life?  I encourage you to meditate on Hebrews 11:1 and all the verses shared in this post and pray and ask God to show you the lies that you may be believing so that you may be freer today than you were yesterday.

I am proud of you. You are loved and chosen by God.

 

 

Find Your Victory Song

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Off CA 177 Highway March 2018

Circumstantial, emotional and mental darkness can leave us lost without words, without hope, without joy. How do we fight when it all feels so dark?

I must be honest, I am an optimist. I tend to lean towards the cup half full and even try to convince people it is actually full because there is air inside of the cup too. It really is full even when you can’t see the complete fullness. I wouldn’t call myself a Pollyanna. I have let some of life’s unfortunate realities cause me to be suspicious and untrusting (although some of that is also a gift in discernment). M.S. has stripped me down to reveal the hard days can beat me into an emotional battle between light and darkness. How do I keep from falling deep down into the dark pit?

-I let precious people in my life know when I am struggling with physical, emotional or mental issues. Honesty keeps me from putting on masks. Prayer, emotional support and talking through my feelings helps to prevent me from spiraling down.

-I set my heart on eternity by reading God’s word, grabbing hold of His promises and reminding myself of His faithfulness. Like David, I lay it all on the table with God; what I feel to be injustices, sorrows, anger, etc. and I let Him reveal His heart to me in the midst of what He is allowing.

“Hear, O Lord, and be merciful to me; O Lord, be my help. You turned my wailing into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing to you and not be silent.” Psalm 30: 10-12

“O Lord my God, I called to you for help and you healed me. O Lord, you brought me up from the grave, you spared me from going down into the pit.” Psalm 30:2-3

“Free me from the trap that is set for me, for you are my refuge. Into your hands I commit my spirit……. I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my soul. You have not handed me over to the enemy but have set my feet in a spacious place.” Psalm 31: 4-8

Reading the Psalms helps me to be reminded of God’s faithfulness in the midst of great trials. David was running for his life when he had done no wrong. Although he had been chosen to be a future king the journey to get there was grueling.  At one point David’s wife mocked him in public. David had extreme physical, mental and emotional pain and he learned to pursue God’s presence and lay all the ugly on the table and allow the Father to reveal His hand in the process. David constantly recognized God’s love in the midst of the journey and his songs came from these places of wrestling.

I have my own fight songs that “Hoo-rah” me into pressing onward and upward. I haven’t written my own yet but there are amazing songs written to encourage and uplift. Below are just a few of my favorites. I have so many. I pray you gather a collection of “Fight Songs” to encourage you on down, dark and down right stinky days. God wants to lift your head.

I realize this video is very emotional. It has me bawling every time I watch it which is why I do not watch it often. 🙂 Feel free to listen to the song and Rise Up!

 

 

I encourage you to write your own Victory Song proclaiming the Victory through the Journey of Trials. We will enter in with a Victory Dance and Victory Song. Look Up! Your redemption draws near!

Traveling With M.S. and Some Thoughts I am Brewing

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From the flight, somewhere between Texas and Alabama.

Traveling with M.S. is no easy feat. The months leading up to weeks and then like a rushing wind the days leading up to departure, fear creeps in and contemplation runs amok just trying to figure out exactly what to bring to aid in easing my burden. I never feel great knowing that I “have” to bring a device for assistance and I really dread the idea of others having to help me but its too hard for me to do it all by myself now. Talk about humbling!

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Speed Racer. 

I asked for all of my birthday money to go towards this September trip to the American Christian Counselor’s Conference. I volunteered so I could attend free and was gifted with a special discounted plane flight.  The cherry on top was the gift of flying into Alabama and getting extra time with one of my dearest friend’s Joanna, a former Cali girl- turned Southern.  As I prepared to come she lovingly reminded me that she just wants me comfortable and to bring whatever will be best for me. Sometimes I just need permission to do what is best for me and enables me to have more energy even when it is very humbling. Years ago, while I was on a two month, mild bed rest with my last baby, my darling Joanna pushed me around in a wheelchair so I could attend church or other functions that I didn’t want to miss out on.  And then, right after my diagnosis when my legs were weak and I struggled with driving she drove me to stores all over kingdom come. She served me then and I was reminded that she would serve me well again.  I yielded and decided to take my scooter.  I am so thankful that I did. I am so thankful for her willingness to love me well.

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After a long day of traveling and two long years I got to squeeze my sweet Joanna. 

The trip was  physically exhausting but at every turn, wrapped in gold lining. The rich conversations, powerful worship, mental exercise and strengthening, love of the people and delicious fellowship were every bit a part of the gift God had for me. My babies were safe at home with my amazing husband who blessed me with this time away and I had no worry.  My soul was awash with fresh springs and desires confirmed in my heart. I asked questions and received a plenitude of answers. Many of them I am praying through and some I will be sharing as the days go by.

What are you considering to let pass by you today because it seems like too much work?

It may be that Home Group-too vulnerable, too hard to push out of your comfort zone. Maybe it is giving yourself time away in quietness or time to do something you enjoy  because you still do not think you are worth it. Maybe it is that friendship you are desiring but not so sure you want to take the time, be real with someone, or let someone know the real you. It may be pulling up a chair and playing a board game with your child even though you do not feel like it. It’s those small somethings that  weave loving life imprints on the heart of your child. Maybe it is some Big Hairy Audacious Goal that seems so far fetched and scary to  pursue, but you have it deep in your heart.

“A hero chooses to be courageous even when he feels inadequate.”

Gregg Jantz PHD

You are a hero. Please. Stop. Let that sink in. YOU ARE A HERO.

You are worth it. What ever the chasm you are steering away from, it is worth the effort to cross. Loving and being loved is worth it. Loving yourself enough to do what is good for you is worth it. Stepping out of your comfort zone is worth it. Let’s live fully today because tomorrow isn’t promised to  anyone, not you, not me or our loved ones. And let’s remember that it is the seemingly minuscule moments of each day that make up a legacy. What Legacy do you want to live?

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Outside of the Opryland Hotel in Nashville, TN. 

Second day of Cryotherapy

I made it to three minutes at -230 degrees! Yes, -230 degrees. My body ached with the cold and I had to focus on anything but what I was enduring. I chose to move my legs a little more and balance myself at the top of the machine so that I wouldn’t fall into the nitrogen vents. I went from numb (prior to entering the machine) to more numb (inside the machine). Upon exiting the machine, I was full of shivers and shakes and weakness.  I am adjusting to the experience. No, I am not enjoying the experience but getting more accustomed to it.

I am in a lot of physical discomfort tonight but there are storm clouds overhead and I always feel achy when storm clouds roll in. Praying that the continued treatments will trigger my body into a healthier state.

“I will lift up my eyes to the hills, from where does my help come? My help comes from the Lord, who made heaven and earth.” Psalm 121:1-2

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light and momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians 4:16-18

Have a glorious day and keep your eyes on that which is eternal!

XOXO,

Charise

God’s Heart toward You

God’s heart has always been to be with you.

He does not need you. He freely chooses you.

His communion with Moses in the dry of the desert sun-tabernacle full of glory. Son of God come in the flesh, God in our very skin to walk among us, to be with us- tabernacle among us. 

His intimate covenant with you and me, His blood shed for you and me, was it for His own fulfillment? His only reason was LOVE. He chose us. He loved us enough to want us to have whole hearted devotion to Him. And when we are wholly connected to the Holy God we are holy. We are whole. We are complete.

“Because I live, you also will live”, Jesus said. “I have come that you may have life, life more abundant!”

When the Son went to the Father, He did not leave us alone. He sent our Counselor to be with us forever. Forever. With. Us. The Spirit of truth. 

He does not leave us as orphans. He welcomes us and calls us His own, special, royal, BELOVED.

He loves to be entwined with you. The Vine and branch melding together and bearing fruit. Do you glimpse the intimacy of the Father God with you? You are His. You are loved.

Write this on your hands. Write it on your walls. Dry erase marker it to your mirrors. Drill this in your head until the lies of the enemy fade away.
You are loved. And you are enough because you are His. 

Life is Messy

Life is messy.

Messy can be beautiful can’t it? Sometimes it’s hard to see. The mini Picasso six year old painting is beautiful. Bright orange seaweed tangled in bright green algae=beautiful.  Messy people that love in the messes=beautiful.

 

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My longing for order, for control, for keeping all things together can prevent me from experiencing the blessing waiting for me, the beauty waiting for me. The blessing doesn’t always come through wide, green pastures. It often comes through dark, narrow roads with a glimpse of light peeking through to guide. His tender hand guiding, directing through shadow filled badlands. Blessing comes through the messy.

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Moses didn’t want to speak to the Pharaoh.  He could speak. He just didn’t feel himself adequate enough to do what God was calling him to do. “Who me? I can’t do that. Don’t you know my disability, my lack of ability?” We make excuses and miss His power enabling us to do what He asks us and prepared us to do in the midst of what He has allowed.    The expectation Moses placed on himself was not what God had placed on him, but his own fallen perception of God’s role in his calling.  Focusing on the messy causes us to miss the masterpiece He is making.

The Israelites were scared to take possession of the land God had promised. The land was EVERYTHING that God had promised but there were giants in the land and they chose to focus on the giants. They chose to allow fear to keep them from trusting God’s promise and the blessing in His provision. They focused on the messy and missed out on the beautiful.

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God gives promises and sometimes we have to fight through opposition to fully enjoy the promise. Is it worth the fight? You bet it is.

There is always blessing and beauty on the other side.