That One Day When Esmeralda Woke Me Up at 2AM and I Realized It Can Still Be a Good Day

It’s 2am. I have been on a physical and mental rollercoaster ride for nearly a month now. There have been insurance changes, lapses in medication, and now, thanks to a newfound lesion on my spinal cord, I am officially experiencing my first MS relapse.
The medication I was on has failed me, but all is not lost. That’s the thing about treating MS. It is a game of trial and error. And thankfully, there are many things to try. I am wide awake this morning because the treatment for a relapse is a 3-5 day IV drip of high dose steroids. My doctor ordered 3 days and following my final dose, my legs decide to go all Oompa Loompa! I was walking through the store after work today (Strike one) and my knees start feeling all tight. I thought to myself, “Self, perhaps you shouldn’t have cut the grass yesterday.” (Strike two)
I am striking myself because I have learned from my personal experience with Esmeralda, that I get to choose one activity per day. Monday through Friday, that activity is work. If I do more, even a tiny excursion to the store, there is a price to pay.
So, I get home and it looks like Sherman Klump (Eddie Murphy movie?) is making a comeback from my knees down! UGH! So, I dragged my swollen legs into the laundry room (I had dirty clothes! And…strike three), then climbed into bed and propped my legs up on 3 pillows. I was incredibly sleepy, so at 8pm, after hearing the soothing sound of my guy’s voice, I drifted to sleep.
Now, I am wide awake, hoping that at some point in the next few hours before my alarm goes off at 6:30, that I can snooze for a bit.
I hate MS, but I love my life. I remain grateful for my family and friends and for the love and encouragement I receive daily. I am determined that today and everyday will be a good day.

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That One Day When I Started A Blog

I love to write.  For years, I have had novels swirling about my brain and have never taken the time to write them.  Mostly because it was overwhelming to write an actual book, so I just kept living life, “writing” the books in my head.  I returned to school this past fall at Indiana University Southeast (after a near lifetime sabbatical from Ball State University) and my first assignment in English was to write a Literacy Narrative about how I came to love reading and writing.  My professor loved it and asked me to submit it to the DALN website at Ohio State University.  I started thinking maybe I can do this.  I could try it…and it just might work!  Working full time and schooling full time made it impossible to do, so life stepped in and made time for me.  In November, I was diagnosed with Multiple Sclerosis and my life, as I knew it, came to a grinding halt.  Being positive in the face of adversity seems to be my forte, so I took my new diagnosis as fate stepping in, forcing me to fulfill my calling.  In my blogs, I will go into more detail about my new friend MS (I named her Esmeralda…Ezzie on good days), mothering, relationships and life in general.  Follow along with me to the neighborhood that is my brain and let’s have fun together!

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That One Day When I Realized I Am Right Where I Belong

My life has once again been touched by a Netflix movie. It’s entitled, When We First Met. The movie tells the story of a young man who meets the love of his life (so he thought), but she goes on to become engaged to another man three years later.
He is now obsessed with changing the last three years of his life by traveling through time via an antique photo booth. With each trip, he finds that he must go back multiple times to change slight details in order to fulfill his destiny.
He finally realizes that the girl he thought was his soulmate is only a puzzle piece to finding his true love. I won’t tell the rest because it was just released, and you may want to watch it for yourself.
How often, though, do we think that we have made wrong decisions (and maybe we have), but they work together to make a wonderful thing. I could lie here and think of all the things I could have done differently in my life, using what I know now and changing my past. If I were to do that, I would miss all the beautiful that came from the ugly. I have amazing children and grandchildren. I have met incredible people and made lifelong friendships.
When I look back on my life, I would not change a thing. I am right where I belong and the path it took for me to get here is paved with gold.

That One Day When I Lost My Voice

There are many ways to lose your voice. Obviously, it can be temporarily lost due to illness. It can also be lost when you’re in an abusive relationship. I have lost my voice in both of those situations, but most recently, I lost my voice to Multiple Sclerosis.
When you have the flu or a cold, you can say “My body aches. My throat hurts.” Coughing is another way that you can express what is wrong. When someone asks, “How are you feeling?”, you can answer, “Like crap”, and people can usually relate.
That same question posed to a person with MS, or any other autoimmune disease for that matter, can cause so much stress. When we say, “I’m tired”, the tired is a fatigue that defies description. When we say, “My body hurts”, the pain is an inexplicable force. When we say, “I don’t feel well”, there is no relatable situation that can even halfway explain what we are experiencing. We have loved ones who try to understand, but it is nearly impossible, for we ourselves do not understand.
When we wake up and can barely walk, or we are in so much pain, we just want to lie in bed and pray to disappear because there is no relief in sight. Trying to understand it can send us into deep depression. Most days, it is easier to say, “I’m okay”, but in the process of making it easier, our voices are usually lost.
Multiple Sclerosis is a taker. It takes your fight, it takes your independence, it takes your voice. What I am finding out, though, is that I don’t have to lose it completely. Maybe I can change it, where my voice is no longer silenced, but perhaps a whisper. And as I live longer with this disease and learn more about it, that whisper can become a roar. I will continue to fight. I will find my voice.

That One Day When I Realized the MS Tax is a Price Worth Paying

I mentioned in one of my earlier blog posts that I ran, but had to pay MS tax. For those who don’t know, when an MSer participates in any activity, there is a physical price to pay that we refer to as MS tax. Something you must pay no matter what, just like paying the IRS.
There are different levels of tax payment. For instance, a dinner out with friends may not cost as much physically as, say, a trip to the grocery store. I found this out last week when, on a good day, I decided to refill my pantry. I thought that if I leaned on the grocery cart, it would alleviate my cost. This may have worked…if the carts had been self-propelled. I didn’t count on how much effort I would have to make to actually PUSH the cart!
About 10 minutes into my stroll through the store, my feet and lower legs (that are always numb and tingly) started screaming. “Did someone light the floor on fire?” my feet screeched. I checked to see if anyone around me had heard the outburst. I powered on trying to ignore the obscenities being yelled at me from below. “Ack! What is she doing up there? Somebody do something to make her stop!” There they go again, squealing like pigs being led to slaughter. But did I listen and cut my trip short? Heck no! My stubborn side said to my mostly absent logical side, “Girl, you can do this!”
Once I finished my shopping (an hour or so later) and arrived back at home, my now angry logical side answered, “Girl, what were you thinking?! We can’t do this!” The tax was extremely high for this activity. About 2 and a half days later, it was finally paid in full. I was told by one of my very good friends, that from now on, grocery shopping would now be known as Girlfriends’ Day. I would be placed safely in one of those buggies with the basket on front, and made to behave. I love my friends.
The tax due on dinner with friends is much lower, usually paid within hours, as long as I rest immediately afterward. A 2-hour road trip tax can be paid in about a day. If I have to drive (which I try to avoid), I add another day of tax. Life with Multiple Sclerosis requires major adjustments. I have found that the more you fight it, the harder it fights back. Finding the balance includes having respect for the disease, knowing your limits, and learning to be okay with them.
I have also found that giving it a name helps. I named my MS Esmeralda. There are days when Esmeralda and I go head to head (she usually wins, but at least I fight). There are more days, though, that she and I co-exist in peace. She usually keeps quiet if I include her in my decision-making process. The MS tax keeps me in check. As long as I have loving friends and family supporting me, it is a price I will gladly pay.

That One Day When I Erased My Past and Experienced My Future

As children, we are raised with our parents’ beliefs. As we grow older, we begin to question those beliefs and try out different truths. When I was around 10 years old, I began my questioning journey. If this, then why that? I have always believed in God. I can’t say I have always understood how He works, but I have always believed He exists. I was taught that things of the world were bad things. Listening to secular music, ladies wearing pants, makeup and earrings were frowned upon. That if you did these things, it separated you from Christ.
I remember going to the grocery store with my mother and seeing different women with short hair, pants on, makeup and earrings and seeing a special “thing” that I couldn’t describe. It was a light, a loving light, and thus began my quest to clear up this confusion. The women I had grown up seeing, had long hair and skirts, but they didn’t all have this light that had fascinated me. To the 10-year-old me, they seemed unhappy. I asked my mother questions to help clear up the confusion, but it only made it worse. I wanted that light. And I was determined to find it.
I invited my friends to church to see what they thought. I wanted to see my church from an outside point of view. So, after they experienced for the first time what I was accustomed to, I would ask them what they thought. Some thought it was weird, others enjoyed what they felt and saw. This was also a dead-end to my path of finding my way.
When I became an adult, married and had children of my own, I had determined that I would not push the beliefs I had been raised with onto them. I wanted them to have a firm foundation in Christ, but not a religion. I have found religion to be binding, while a relationship with Christ is pure freedom. I began erasing everything I had been taught to be true, and believing only what I knew to be true from experience.
I found God to be real to me in the miracles I saw of healing. Things that the only explanation that made sense was God. I found God to be real to me in the inexplicable peace I found in the most daunting situations. I found God to be real to me on my first visit to the ocean. When He first began revealing Himself to me, they were huge unmistakable forces. When my faith was firmly planted in Him, I began seeing him in the smallest things.
Gratitude for everything, good or bad, in your life opens your eyes to see the invisible, to feel the intangible, to hear the inaudible. I had finally found the Light I had been seeking. If you are searching for yourself, erase what you think you know, and experience what no one can take from you—the power of a true, unbreakable relationship with Christ.

 

That One Day When Music Moved Me to Write

I love music. No matter the arena, it is goosebumps. It is motivation. It is inspiration. It is feeling the blood move through your veins.
When I sing a certain song that I feel in my bones, it is life. When I hear a certain song that I feel in my bones, it is food for my soul. When I hear strings…pure ecstasy.
My brother plays the trumpet. Beautifully. When I hear him play, stress and fear flee. Chains that bind are broken, happiness floods my soul.
My grown children all sing. It is soothing to my spirit. It brings me closer to each one of them. When I hear a song that my youngest son loves, I smile. He is all at once sharing space with me in that moment.
Music is healing. No matter what the ailment, it heals. It soothes. It unites. It mends brokenness. Yes, music is all things. It is love. It is silent and bold. Exhilarating and exhausting. It moves you physically and emotionally.
Music. Is.

That One Day When Netflix Made Me Think About Stuff

I have lots of time to think now that I am home due to my illness. As I watch one of my favorite Netflix streams, I think about the possibility of a divine plan. Imagine a deity that set out to create perfection, lived out through the life that was formed. Imagine that this deity thought about each and every living creature and fashioned a perfect plan for each one.
I imagine that this deity would not have wanted robots. No, a deity would want the creation to have a little power. Not too much, but enough to make choices. Enough power to discern what is right, what is wrong. Enough power to know the complexity and simplicity of love and how to share it. Enough power to decide to believe a deity even exists.
This creation chooses to believe that a deity exists. I refer to Him as Lord, God, Christ. Though life is not perfect because of our choices, the creation He made is. The layout and function of the human body, the cycle of life, the way the ocean and land know their boundaries; only an omniscient being could control the mass we call Earth, Space, Universe. The thing we call life.
I do not like to limit God. He is way too big for that. People argue about Creation vs Big Bang. Who is to say that either theory is right or wrong? Why couldn’t the sheer power of God cause an explosion as He was creating?
I have had plenty of reasons to doubt His existence. And at times I have, but the experiences I have had with Him and because of Him are undeniable. When I question the bad things, I have to tell myself what I tell my children, that for every action, there is a reaction. We make a choice to put things into motion and once it starts, there’s no stopping it. Our choices are so powerful. They affect everything and everyone around us, across generations. It is one of the powers with which we have been trusted. We can blame God for giving us choices, but we can’t blame Him for the choices we or our ancestors have made.
When I think about the possibility of a divine plan, I look at my life and cannot deny mine.

That One Day When I Wanted to Disappear

There are days when I feel the weight of Multiple Sclerosis. I feel it emotionally. I feel it physically. On these days, sometimes I want to disappear. Maybe not permanently, but just a slow fade into ghost land. Like the Invisible Man, I want to be there, but unseen.
I haven’t written for a while, because that weight has been almost unbearable. I hurt physically, therefore have been blocked mentally. In the last 2 months, MS has taken much from me. It is ok, because it has also given me a chance to evaluate my life. As I take stock, I find so many things to be grateful for. My children, my grandchildren, even this life altering disease.
When you are diagnosed with something over which you have no control, it forces you to take a different viewpoint. You can choose to wallow in self-pity, or you can find the good. Gratitude is a powerful force that opens the doors of healing.
Healing does not always mean the disease is gone. Healing can come in the form of forgiveness, happiness in the face of adversity, freedom to live life in its truest form.
Even when I try to be positive and thankful, I must still be careful not to let myself fall and dwell in the pit of sadness. It happens sometimes. I fall. I walk around in the valley, but I do not stay. I have amazing friends and family that are somehow connected to me and know the exact time to call or text. I have been blessed with the friends that I have chosen and who have chosen me. People say you know who your real friends are when tragedy strikes. I have not lost any friends on this journey. The people who had been in my life have remained and I have gained new ones.
On this day, I wanted to disappear. On this day, I wanted to be in ghost land. But on this day, gratitude wins.

That One Day When Her Scars Saved Her

I saw a movie recently. I don’t remember much about it, but at the end, the heroine of the movie was saved from certain death all because she was scarred. She had suffered as a child. She had lost her parents, been sexually abused, and the way she dealt with her pain was to cut herself. The scars that were left behind saved her from a psychopath who had made it his job to hurt or kill those who had never suffered. When he saw her scars, he set her free.
We all have suffered in some way. We all bear the evidence of that suffering. Some of us carry noticeable markings of the pain, others, not at all. So often, we overlook the beauty of our scars. The heroic way our broken skin blends with new to form a masterpiece. A masterpiece that once shared, could heal a broken spirit.
Someone very close to me has a large scar on her leg. As a little girl, I remember thinking how pretty it was. The path of swirls, the shadows, the light, the dark; it spoke to me and I was mesmerized. I don’t know if I have ever shared that with her. I don’t know if she ever saw the beauty of that scar, but the picture it painted in my head made me feel unafraid, bold.
Let us not be ashamed of our scars. Let us never hide the battles we survived to obtain the beauty that makes us who we are. We are broken, but we are beautiful.

That One Day When I was Enlightened by a Disney Movie

There is a comedienne on Facebook named Anna Douglas who is hilarious, but also shares very powerful messages. Most recently, she has taken snippets from various Disney movies and calls them “low-key anointed”.
I just watched Moana for the first time, (if you have not seen it, spoiler alert!) and I loved the empowerment message. Moana is on a quest of self-identity. I have been there several times in my life, so I can relate. There is a scene toward the end where she has a heart jewel that has to be returned to its rightful place to save her village and restore balance.
She and her friend must fight a lava monster to get to where she thinks the stone is supposed to go. As it turns out, the stone belongs in the heart of the lava monster. The very thing that is trying to kill her! This monster is set on destroying Moana and anyone else in its path, throwing lava, causing waves to rise to take out our heroine for good. When Moana realizes where the stone goes, she commands the water to part, and on dry land makes her way to the monster. Simultaneously, the monster is rushing toward Moana, heat blazing, ready to take her. She is singing and gaining power with each step until finally she reaches her destination. Face to face with the monster, the song she is singing speaks truth to the heart of the beast, and it settles long enough for her to place the stone. With the stone back where it belongs, the monster morphs into who it was all the time: a goddess of life!
How often do we let the monsters of doubt and fear rule our lives? They each have a job, and that is to destroy us if we let them. When we speak the truth in our lives, whether we feel it or not, we speak life into the worst situations. Circumstances that we feel were made to destroy us are actually there to bring us life. Surround yourself with people who speak life and truth and see the difference it makes.
I believe in God and I believe in the power of prayer. Just when I feel I am going to hit rock bottom, someone will pray for me and everything turns around. I am grateful for the people that God has strategically placed in my life. They are there for a reason, and that reason is clearer every day. Enlightenment. What a wonderful thing!

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