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

The Bend in the Road

 

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“When I left Queen’s my future seemed to stretch out before me like a straight road. I thought I could see along it for many a milestone. Now there is a bend in it. I don’t know what lays beyond the bend, but I’m going to believe that the best does. It has a fascination of its own, that bend….I wonder how the road beyond it goes-what there is of green glory and soft, checkered light and shadows— what new landscapes— what new beauties–what curves and hills and valleys further on.” –Anne of Green Gables

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Tragedy and trials strikes us all at one point in our lives. We can choose to see beyond it and believe that days will be better or we can wallow in pity and despair and give up on dreaming all together.

There are moments I want to give up on dreaming big dreams. Fear envelopes me  like a heavy coat and I have to choose to throw it off and believe the bend in the road has beauty and sweetness and treasures that I would not have been dazzled by had life not taken me down this road. When my body feels weak and aches and I am limited by what I can physically manage, my natural eyes can see myself in a wheelchair unable to do anything. It is at that moment that I say, “NO! No. That is not me. I will keep getting up. I will keep fighting the good fight of faith and I will keep claiming God’s promises of healing.”

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I am choosing to believe there is beauty in these ashes, life from the grave, healing of the broken and busted up things.

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Isaiah prophesied of Jesus that He would take up our infirmities, carry our sorrows, be pierced for our transgressions, crushed for our iniquities, punished that we may have peace and by His wounds we would be healed.

Diamonds come from the fire, wheat grows from busted, broken and dead seeds, flowers come up from the dirt.

What is your bend in the road, that situation that has thrown off your “groove”, taken away something you thought you would have or dampened the pages of the story you were writing? Keep holding fast. Keep dreaming big dreams. Keep believing God to bring forth beauty from the ashes.

“The Lord will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail. Your people will rebuild the ancient ruins and will raise up the age old foundations; you will be called Repairer of Broken Walls, Restorer of Streets with Dwellings.”     Isaiah 58:11-12

God is not done with you. Keep fighting the good fight of faith and keep your eyes on that which is unchanging. There is beauty on this bent road.

Fourth and Fifth Days of Cryotherapy

Every time I type Cryotherapy into my electronic calendar it magically turns into Cry Therapy. Seriously. Cry Therapy.

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Fourth Day chicken legs. My skin is clearly agitated more this day than any other.

My fourth experience was almost to the cry therapy point. I was in at the one minute point and my skin was burning and burning bad. I kept thinking, “Oh my goodness, frostbite. I had my cooling wrap on my legs in the car and maybe they weren’t dry enough before entering the machine.” I rubbed my legs with my glove laden hands and lifted my legs up and down even more than I normally do. The burning sensation was intensifying. At two minutes I told the tech that I did not think I could make it to three minutes. I painfully made it to 2 minutes and 45 seconds. The pain was intense and I was forcing myself to inhale and exhale. When I exited I could not let the kids touch my legs and I had to keep moving, as well as I am able, to warm up. I slowly warmed and the burning pain slowly dulled.

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Day Four

The fifth treatment was today and I managed to get to the three minute mark. My skin still burned and my body ached but I begrudgingly pushed through. I was blessed to have my hubby there today. He is always rooting me on! My babies have become incredible encouragers to me as they distract me from my pain, cheer me on and warm me the moment I exit the machine. This journey is giving them hearts of compassion and empathy. I hate that they have to see me in pain but I see God using it to shape their character in amazing ways.

Here is a video my ten year old filmed. If you listen closely, you can hear my moans and grunts.

 

Yesterday, I witnessed a woman get into the machine right after I got out. She carried a full on conversation in what sounded like a totally normal tone and got out like she was in normal temperatures. God bless her, she made me feel like a wimp. All I know is it causes me great amounts of pain. A fan blowing on me causes me pain. My husband sweetly caressing my skin can cause me pain so please do not take my experience as what you would experience. I have heard from many athletes that LOVE this therapy and have found it incredibly helpful in recovery. I have been experiencing more nerve pain lately and  I really do believe  I am really trying to believe that this is a part of the healing process. I recently read that the MS body will experience more pain when the myelin sheath is being restored. Amen and pass the ice tea!

Wholebody Cryotherapy

I have to start out by telling you my eyes are burning and I am beyond tired  right now but I know that if I do not write now and share now, it may not happen.

Life has been more restful for me as of late and I am thankful for the rest. I am not driving more than  one mile away in a very slow speed to take the kids to music lessons once a week. I still can control my foot but longer periods of driving only causes pain and weakness.

My right side has been heavier and my right foot wanting to drag when I walk for any length of time. The heavier my foot, the harder it is to drive safely, so for now, I am staying off the road, laying low and allowing my hubby to take over the errands and grocery shopping. Thankful for him stepping in.

A darling sister of mine shared Cryotherapy with me and after researching it I decided it was worth trying. Steroids would be the normal option for an M.S.er at this point of inflammation and I am trying an alternative to see if this helps.

You may be asking, “what in the world is cryotherapy?”. Here is an explanation from one website:

With Whole Body Cryotherapy (WBC) the body is exposed to extremely low temperatures (-200° to -250°F) for 2-3 minutes at a time. This rapidly lowers skin temperatures and triggers cold receptors to activate the body’s survival mechanism. The brain then reacts to the skin sensors and stimulates regulatory functions of the body, like releasing anti-inflammatory proteins, endorphins, and rapidly circulating oxygen-rich blood throughout the body.

Today was the first day.  The tech was delightful and sweet and very helpful. I left on my panties and put on a sports bra (no metal allowed in this chamber). I put on their comfy gloves, big manly socks, masculine robe and entered the chamber.

 

Here I am in the machine. You are seeing little bits of the Nitrous Oxide. I can’t say that the initial experience was lovely and pleasant. It was already cold. Once I entered and the door was closed, I took off the robe and handed it to the tech. IMG_3252

She warned me that first timers do not always reach the three minute mark. It is usually something to work up to. I wanted to make it to the two minute mark at the least. That was my goal. Time flew by and yet the pain was hard to endure. You are supposed to slowly rotate your body while in the machine. I was doing so but because my body IS already numb, getting more numb made it more difficult to steady myself especially while turning. You are not supposed to touch the inside walls and you are not supposed to look down or breathe in the liquid nitrogen so I kept my head up and breathed slowly in and out to calm my body down. The cold and I don’t mix and this was no different. It was mighty uncomfortable. I do feel that this is better than an ice bath. Ice baths make you experience a different kind of cold because your skin is wet and cold. It is different. Maybe I will have a better explanation when I am not so tired.

When I reached the two minute mark, the tech turned it off and handed me the man robe. When she opened the door my babies were waiting anxiously for me. They could see my face above the machine and could tell I was uncomfortable. When I stepped out my oldest embraced me  and held me close to him to warm me up and the rest of the little ones clung to me too.

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My babies love me! 🙂

Cryotherapy-kids embracing me

My skin was freezing and my legs were weak. I am not sure if that was due to the stress of the new experience or the extreme cold. I could not feel the pain so that was nice. As the day went on I could feel the normal pain, normal fatigue, normal weakness. I am going back tomorrow and praying the continued visits will help in the long run. I picture this experience like an athlete would ice a bruised or injured leg. It takes time for the healing to take place but I am going to persevere to experience the healing.

Here are some links for those who want more info on Whole Body Cryotherapy:

Take your time on this site. There is information for lots of different ailments, diseases and more.    http://wholebody-cryotherapy.com/en/cryotherapy/multiple-sclerosis.html

This is a place in Riverside, CA- http://www.cryofixwellness.com/

Pubmed on MS. and Cryotherapy- https://www.ncbi.nlm.nih.gov/pubmed/20299758

Blessings to you all,

Charise

My Bleeding Heart Met the Healer

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I was a young, teenage girl searching for the avenue to which my bleeding heart could be healed.  The gashes of Daddy moving away and being raised in a single parent home ran deep into my being. It didn’t matter that I knew I was loved and daddy wasn’t far and that I had him every other weekend and Wednesday and sometimes days during the week too. It was broken home that broke me. The wound was deep and it bled onto each boy I had a relationship with. I clung to each one as if he were my last hope. Hope. They never told me not to put my hope in a boy. He might crush you and you, you might be the one to crush him. My veins cried out for rest from this crazy wave of impulses and heartache. With one such situation I wanted to end it all. I didn’t want to keep moving forward with this life. Why did it matter anyway? This life? What was I here for? Would anyone really miss me?

Alcohol was already luring me. Just a swig could numb the pain. Just a swig here and there and I wouldn’t get caught. Just a cigarette here and there and mama wouldn’t know. Addiction was grabbing at me and I was slowly being pulled into its grasp. Escaping seemed easier than facing the pain. I wasn’t desperate or daring enough to do the job.

Friends and fun weren’t lacking but as I stood surrounded by a crowd of friends the loneliness hovered around me, the emptiness deep. I was still lacking to be known or really it was to know.  To know how much there really was to this life. To know the Giver of Life.

Religion wasn’t foreign to me and either was Jesus. I was raised in the Catholic church. I was involved in the youth group and loving it. I was a church going girl with a wild side and deep wounds. Because of my involvement in the church my sweet friend Crystal came to me with questions about heaven. I answered honestly. I didn’t know. I didn’t know how to get to heaven. I knew that I wanted to know.

And then I was invited to a Harvest Crusade by my best friend Cheree and her family. I borrowed her adorable clothes and dressed to the T to impress a much older boy who was going with us. I was going to impress and instead I was impressed upon by the Holy Spirit of Truth. I stayed in  my seat at the Angels Stadium but I was struck by the words from the Pastor’s mouth and there was no shaking this electricity flowing through my veins. The following week I went to church with my friend and I had to sit on my hands during service. I couldn’t wait to go forward and surrender my life to Christ. I couldn’t wait to receive His gift of love. I was overcome. I wept as I met my Healer. That day was the beginning of my healing.

The Hard Choice: Accept the Illness, Still Believe for Healing and Be Content No Matter What

He didn’t know how those words would ring in my ears at the dinner table while watching my giggling children eat their dinner and talk in high pitched tunes about everything under the sun.

He didn’t know how pierced my heart would be and how deep the struggle and need to guard my thoughts.

The Grocery Clerk wanted to encourage me with a path for healing and I’m super excited to learn more about Apitherapy but those words stabbed deep. The words,

“My first wife died of M.S. at age 54.”

Silence. And then like a CD on repeat, those words kept playing in my mind all day.

Fifty Four?

I’m turning thirty four this year. If I were to die that young, my oldest son would be thirty, and then the next; twenty eight, and my baby girl; twenty six and and my baby would only be twenty four. No, no! It’s too young. What if they aren’t married yet? What if I don’t get good years with my grandchildren? What if they never see me like I never saw my mom’s mom alive? No!

And……It’s that horrible “What-If” game again.

It’s that painful struggle of facing the possibilities of my illness and yet believing the best; believing that I will live a long, healthy life and my husband won’t be changing my diapers at an age that I should be enjoying getting older and my kids are more independent.

The greatest battle is accepting my illness, still believing God for full healing in this lifetime and yet being content in whatever state I am.

You and I, we could die in a car crash next week and that is it, our time is done. We could live a life shortened by the effects of someone else’s sinful behavior or we could die of natural causes. We are not promised tomorrow. That is why we live to the fullest today! 

The reality is, this gentlemen (and he really is a gentlemen) doesn’t even know the protocol his first wife took to battle M.S. They were already divorced when she was diagnosed. He knows nothing other than that she died at 54 of the illness. And so, with my limited understanding of her story, I need not fret or allow discouragement. She is only one in many. Many fighters have lived long, fruitful lives with M.S.

I can’t think about tomorrow or next month or years down the road. I will choose today to do all I know to be healthy and strong and I will commit all I am doing into my Father’s hands. He loves me and His plans for me are for good. No matter if I live a life into  my eighties or much earlier I will live a life of hope because I have hope! 

These days on earth are only a shadow of the life to come. My hope lies in the place where no sickness, no sin, no evil remains. My hope lies in God Himself and His rescuing heart.

He is my hope!

David wrote, “Lord, make me to know my end, and what is the measure of my days, that I may know how frail I am. Indeed, You have made my days as handbreaths, and my age is as nothing before You; Certainly every man at his best state is but vapor, surely every man walks about like a shadow; surely they busy themselves in vain; he reaps up riches, and does know who will gather them.

And now, Lord, what do I wait for? 

My hope is in You.”

My hope is God. The God who sees. The God who provides. The God who loves the broken and picks us up and heals us from the inside out. My hope is far greater than healing of this nerve damaged body. My hope is Life Everlasting, Rivers of Living Water flowing to everlasting life, Joy unspeakable and fully of glory! My life is His and I trust Him to use my life to glorify His name in whatever way He so chooses or enables.