the struggle

When I was first diagnosed with MS and started looking at signs and symbols of MS, I found out that the symbol of MS is a butterfly, and often, due to the color, people tend to take hold of the monarch butterfly as "the symbol" for MS.

When I first heard that, I thought, "Oh, that is nice, it is pretty." But I don't think I really got it. Until this week.

There has been so much going on in my life right now. It has been so insanely crazy with stresses out the wazoo. We have been overwhelmed by despair, by trials, by pain in our house over the last month. And my health has definitely suffered. While overall, I have been feeling the tiniest bit better, the last few days have sent me spiraling down again. When I emailed my doctor when I started noticing problems with my vision again, he asked me, "Do you have any stress or fatigue in your life right now?" I about fell out of my chair laughing.

Sometimes, the trials in our life seem to overwhelm us. They are all we can see in our life. I know at times, especially when I am feeling the worst, all I can think about is, "Why is this my life? Why is this what I will have to live with forever?" When we have tribulations, and often deep rooted tribulations that come with an incurable disease, it is so hard to see past these hard times and look beyond.

A monarch butterfly starts as a caterpillar. We all know that. A caterpillar hatches from an egg, and all it has to do is eat for two weeks (ahhh, what a life!). The caterpillar then spins a chrysalis. Inside this chrysalis, so much change is happening. This gross bug is transforming into a beautiful butterfly. I don't really know, but I bet this is not an easy or pain-free process. But it is at the end of this chrysalis where the struggle really begins. This new butterfly, who has almost no muscles in its wings, has to build up all it needs to exist as it emerges. It struggles. It works hard. It is painful at times. I remember watching in my 2nd grade class to a butterfly coming from a chrysalis, and the butterfly would struggle for a little bit, then basically have to rest and take a bunch of huge breaths before continuing. But it is in this struggle that the beauty of the butterfly emerges. The amazing oranges, the amazing detail of the symmetry in each wing, the perfectly placed white spots, the graceful flying. If it skipped the struggle, the butterfly would either never emerge, or if it is done for the butterfly, the butterfly does not have the strength to exist. This butterfly then lives for about 2-6 weeks before it passes to the next generation.

As people look at butterflies, do they think, "Man, what a struggle that guy had?" Usually not, unless you are a biologist focusing on monarch butterflies. People see the butterfly and think, "Wow, what beauty!"

I have been constantly listening to a song by Steffany Gretzinger, "Out of Hiding". I was even given the opportunity to play and sing it at church a few weeks ago. One line of the song has spoken volumes to me.

Oh as you run, what hindered love, will only become, part of the story.

Only part of the story. Our stuff that keeps us from loving or being all that we hope to be, whether it be disease, depression, struggles at work, struggles within a family... anything ... will one day become only part of your story. Just part of it. It is so hard to see that when you are stuck in the depths of it. So hard to see that, even if the struggle is incurable, it is just part of your story.

While MS will probably be a part of my story for life, it is only part of it. I need to remember that. And no matter what your struggle is, it is also just part of your story. There is so much more to my story, just like the butterfly. The caterpillar who gets to eat all day, the transformation, the beauty of the butterfly is the rest of the story. Music, wife, mama to my fur baby, teacher, crocheting, being a friend, love, joy, hope... all the rest of my story.

So while you are in the struggle, don't forget the rest of your story.

Broken

This weekend, we got to visit our second home in Kansas City, Missouri. We spent the first 4 years of our marriage and a very pivotal time of our life in Kansas City developing our love for each other and making a family away from our biological families back in Colorado. We spent so much great time with wonderful people who we love dearly.

This morning we got to go to church where both Husband and I were on staff. I loved getting to see all these people who I used to get to spend time with every week. Yet, when you go away, and you leave with some exciting medical issues, and then develop more issues along the 2 years of absence, you get the question from every person you see:

"And how are you feeling?"

How to answer this. I guess it depends on who is asking. To respond to some people, it's maybe a white lie: "Oh, doing ok!" To others it might be: "I am working on and feeling pretty stable these days." And still to others: "If I make it through the days upright and without crazy pain, then I am happy."When I answer this question, I always hear from people, "Oh, you have such a good attitude about it! You can even talk about it with a slight smile on your face!" I usually answer, "Well, you just have to. If you don't, you will be a broken pile of mess."

Here is the secret: I am a broken pile of mess. Ask my husband.

To all these people who I don't see frequently, I can put on a smile for a couple hours, get through standing to talk to people, give hugs, and try and make everyone believe I am ok. Yet, when it get home and to my closest friends, they see the brokenness. And I often take it out on them. While many people give me so much prayer from afar (and I do appreciate that so much, don't get me wrong!) it is the people closest to me who have to experience the brunt of my grumpiness, my sorrow, my depression. I am broken, but only some people really see this.At the wedding my husband officiated this week, I watched this young couple, excited to start their lives together. I remember once being that young couple, saying the words, "For better, for worse, for richer, for poorer" and not realizing really what "for worse" could entail. And then, they got to, "In sickness, in health..." and the tears started flooding my eyes. My husband promised me this almost 7 years ago. When I said this almost 7 years ago, I thought, "Oh, a good bout of the flu... Definitely, in sickness! We could do that!"



I am sure that my Husband was not thinking that after 2 years of marriage, the "In sickness" part would overwhelm our marriage. Yet, he has stuck by me. He has been there for me through it all... Through back surgeries 1, 2 and 3; through months of testing; through the scariness of what could be; to more testing; to a final diagnoses. And now, through painful injections, through days when I struggle to climb the stairs, through it all. And he is the most amazing man through it all. He held my hands as I got used to the injections. He comes to all my doctor appointments. He takes care of the household chores, like cooking and grocery shopping and cleaning that I struggle to manage. I see in the MS boards so many people who have stories of spouses that leave, that say "I am divorcing this disease, not you" (yeah...), that run when things get tough. And mine sticks by me and gives me all he is.I am so appreciative of all he does. So how do I repay him? Usually with surliness and grumpiness when I get home from a day of showing everyone that I am "Ok." He is repayed for a fabulous meal he cooks by me barely able to hold a conversation because I am so exhausted and in so much pain from my day.

Why do we do this to those we love dearly? Why do we put on a brave face for the world only to come to be mean to the ones who support us the most?

Because I am broken. 

Yet, a covenant of love can restore me.I also heard this weekend about what love in marriage should be. The pastor performing the ceremony spoke about a love covenant. It is not a contract. In a contract, each party gives something and is required to give something back in return. Yet, a covenant is a timeless, sacred promise. A covenant is a pledge of love. "In sickness and in health." A promise of life together.God's love for us is a covenant. A promise to never leave us. To always love us. "If His grace is an ocean we are sinking." An overwhelming flood no matter what we do. No matter how broken we are.Hillsong United has a new song, Broken Vessels. The words describe this covenant love so beautifully.

All these pieces
Broken and scattered
In mercy gathered
Mended and whole
Empty handed
But not forsaken
I've been set free
I've been set free...
Oh I can see You now
Oh I can see the love in Your eyes
Laying Yourself down
Raising up the broken to life

Raising up the broken to life. Our broken bodies, our broken emotions, our broken souls. God's loving covenant  to us.

A love covenant in a marriage means we will see each other at our best, and our worse. But in our worse, we still love each other. It is sometimes so easy to take this for granted. The people who are not in a love covenant to us can take us or leave us, so we give them our best sometimes and forget those who are the most important in our life. We do this with God too. We know he is there, and will always be there, so we just push ahead, giving the world our all and saving what is left for God.We need to remember to balance. To stop during the day and take time to breathe, to close our eyes, to feel God's presence. We need to remember to not run around crazy all day so that when we get home, we have no energy and "for better" time for those who are important. It is okay to still show love to everyone around us. I believe one of the gifts God has given me is to show others that even through suffering, there can be peace. There can be joy. There can be hope. But don't forget to save some of that for those who know you best too.

Raise my brokenness to life, Lord. Remind me of your covenant. And thank you, Hubby, for always loving me in my sickness, in my worse.

Sure on this shining night

I have not blogged in awhile. I have started a blog similar to this a couple of times, but just could never find the words that I was really searching for. I am hoping that today, these words may find the path I have been searching for.

Sure on this shining night

Of star made shadows round

Kindness must watch for me 

This side the ground

Darkness. Darkness has such a bad connotation to it. We see times of darkness as times of despair and sorrow. When night falls, we turn on all the lights of our houses to keep the darkness from our homes.

I have really felt myself to be in a time of darkness for some time. I have been searching frantically for the light of God to fill me during this dark time. I have, for most of my life, spent many years in church. Growing up, we were in church every Sunday morning, Sunday night and Wednesday night unless we were violently ill. I have always known the presence of God, even if I did not feel it.

When my body was hit with MS, at first, even through my time of sorrow, I still knew that God was there. The last few months though, it has been harder and harder to believe God is walking with me through this journey. The motions of church have felt so hollow. The times I spend trying to find God's voice for me in prayer just leave me feeling more empty. I have had some major difficulty with just making it through the day lately. And I keep asking, "Where is God in all this darkness?"

I have been searching for a sign, searching for some light in this time of darkness. I have been reading a book by former Episcopal priest and theologian, Barbara Brown Taylor called, Learning to Walk in the Dark. In this book, she speaks of John of the Cross, a monk who was imprisoned in a monastery prison for helping to lead reform in the Carmelite Order in the late 1500s. When he was in prision, he wrote a work, The Dark Night of the Soul. Barbara Brown Taylor summarizes one of the central ideas of the work, stating, 

"One of the central functions of the night, he says, is to convince those who grasp after things that God cannot be grasped. In John's native Spanish, his word for God is nada. God is no-thing. God is not a thing... He does not try to teach by saying what God is... He teaches by saying what God is not, hoping to convince his readers that their images of ideas and about God are in fact obstacles between them and the Real Thing."  

As I read this, it resonated with me. I have spent so much time in this dark time, trying to grasp on to God, trying to hold on to all the teachings I have been given from birth to now. I could not find my idea of God to hold on to and make fit into "my box" of my dark night. Barbara Brown Taylor continues, saying,

"I do not believe I am describing a loss of faith in God here. Instead, I believe I am describing a loss of faith in the system that promised to help me grasp God not only by setting my feet on the right track but also by giving me the right language, concepts, and tools to get a hook in the Real Thing when I found it... After so many years of trying to cobble together a way of thinking about God that makes sense so that I can safely settle down with it, it all turns to nada. There is no permanently safe place to settle. I will always be at sea, steering by stars."

God is not the idea I have about him. God is not the teachings I have had my whole life. God is not my comfort during the safe times. God is not promises about what benefits I will receive if I follow him. God is not time of pray for me to feel closer to God. John of the Cross says that all these things are substitutes for God. He says that the dark night is God's best gift for you, intended for your liberation.

When we cannot see the path, when we cannot see the hand in front of our face, when we cannot find a light to go to, this is when we are most vulnerable. This is when, whether we feel God's presence or not, we can stay in that moment, and let the dark envelop us to surround us with what God truly is.

One of the most powerful works I have sung in a choir is the song Sure On This Shining Night by Morten Lauridsen. The words of this song were written by poet John Agee. The poem speaks of how, in the darkness, all is healed, all is health, and hearts are whole. This beautiful work transforms the idea of a dark night into a shining night, where all is well. Yet, in the last line, we know that the poet has not truly found everything he is searching for yet. But hope is present in his quest during this dark, yet shining night.

Sure on this shining night
Of star made shadows round,
Kindness must watch for me
This side the ground.
The late year lies down the north.
All is healed, all is health.
High summer holds the earth.
Hearts all whole.
Sure on this shining night I weep for wonder wand'ring far alone
Of shadows on the stars.

John Agee and John of the Cross I believe had the same idea. It is in the dark where we find nothing, yet the presence of God brings health and healing. It is in the dark where we find our hearts whole. Learning to walk in the dark times is a gift. When we walk in the dark, and don't try to just walk towards the light, it is here where we find the presence of God. This presence may look different than we think, but it is in this dark where we may find our hearts are whole.

So for now, I will walk through this shining night. Shining with not what I think God is, but what His presence truly is. I don't know what that is yet, but I do know that this time of darkness may be a period of liberation from what I thought I knew God was. I think I might have some time left to walk through this dark, but I have hope that someday I may find that all is healed, all is health.

Sure Sure on this shining night
Of star made shadows round,
Kindness must watch for me
This side the ground. - See more at: http://allpoetry.com/Sure-On-This-Shining-Night#sthash.jPbET8Zr.dpuf

Another one bites the dust

Yesterday was the last day of the school year. This finishes the 6th year of my teaching career. And I love almost every minute of it (I can say that now that it is over.)

Yet, this was probably the hardest year for me for many reasons. There was a lot of anxiety throughout our staff over test scores and changes and frustrations about what the kids couldn't do. And personally, I had so much anxiety over my health. 2 days before I was to report was when my full blown episode occurred. And we had no idea what it was. And I spent from August to March trying to do the very best I could at work, while undergoing tests for possible brain tumors. For neck tumors. For West Nile. For Lupus. For disc problems. And for Multiple Sclerosis. I spent a few weeks without peripheral vision.i spent part of the year not knowing where my feet were due to the sensory disturbance. I spent the whole year without feeling in my hands and arms, fatigued beyond a point I never imagined I could be, often using all my energy to just stay upright, and struggling to keep it together emotionally.

And yet.

The year was full of more blessings and lessons than I could ever have imagined possible.

We made our family a little bigger ... And Miss H has been one of the best things to happen for my emotional health in awhile.

My staff rallied around me.

My students reminded me to keep smiling.

I had people from Heatherwood, Sunny Pointe, and even people I didn't know sending me love and words of encouragement.

I have learned lessons about showing love and care to others. I have learned that a silent hug can mean more than volumes of words. I have learned that family and friends can be the ones to hold you up when you cannot hold yourself anymore. I have learned that a student telling you, "You are beautiful today!" can make you forget that you feel like you have been run over by a truck. I have learned that students who have so little at home can make you feel like a queen when they give you their favorite stuffed animal or the Hershey's kiss from their lunchbox. I have learned that while this disease can take a lot from me, there are many things it cannot.

I do not know if I will have 1 year or 10 years to keep being a teacher. And in a lot of ways I am still trying to break free of the cage of sorrow and despair of redefining who I am and how I live. But I am thankful for everyone I have met along the way and for everything I have learned. And I am thankful for the hope these experiences this year has given me.

 Now, on to a summer of rest and relaxation.

Perspective

The other day I was sitting on the couch and thought, I hope, someday soon, not every single minute of my day is consumed by the thought, I Have MS. It was consumed my thoughts. It has consumed my conversations. It has consumed my wardrobe choices to make sure I stay cool enough. It has even consumed my shoe purchases and pedicures to make sure I am sporting orange.

I know my constant talking about it and posting on Facebook about it and thoughts about it are just part of the acceptance process of the diagnosis of this disease. And I am sure one day soon, it will get easier to just live and not be consumed with the thoughts of the disease. But right now it is all very new and scary.

In the wee hours of the morning today I was reading a book by Joni Eareckson Tada titled A Place of Healing. If you do not know Joni's story, it is a huge testimony of God working through pain to bring about beauty. I remember even hearing her story when I was a young child. This woman dove into a shallow end of a lake and hit her head on the bottom, breaking her neck, and paralyzing her from the neck down. Yet she uses her injury to be in ministry to others with debilitating conditions. She is a painter. She holds the brush in her teeth and paints beautiful works of art. She is a speaker and speaks many places around the country to bring hope to others.

The chapter I was reading today was about regaining perspective. She wrote:

God won't always change our circumstances, but if we ask Him, He will often step in to help us catch a glimpse of life through the eyes of faith, as He sees it. And that glimpse is worth everything.

My disease has no cure. It is a disease that could rob me over the next years of the ability to do anything and everything I hold dear. And most likely, I don't see a god changing these circumstances for me over the next years. Someone told me that I can be a "faithful realist." Someone who trusts in the full power and love of God, but also realizes that what I am facing doesn't have a cure and miracles do not happen for everyone.

And yet. The perspective of what I am facing is something that God can and will change. If I can look at my circumstances as He sees them, and know that by faith, God will see me through, that is what will carry me through.

By faith. Hebrews 11:1 says,

Faith is the assurance of things you have hoped for, the absolute conviction that there are realities you have never seen.

Realities I have never seen. What sort of realities have I not seen by looking at my disease through God's eyes? How can my perspective change? Hebrews 11 is often called the "By Faith" chapter. The chapter tells about how many people didn't understand exactly what God was doing, but by faith, these people were able to follow God through the storms of life. Here is one example of faith:

24 By faith Moses, when he was grown, refused to be identified solely as the son of Pharaoh’s daughter 25 and chose instead to share the sufferings of the people of God, not just living in sin and ease for a time. 26 He considered the abuse that he and the people of God had suffered in anticipation of the Anointed One more valuable than all the riches of Egypt because he looked ahead to the coming reward.

Things were pretty good for Moses for a long time. The son of a Pharaoh. Then he lived in Midian for awhile, where he had a pretty peaceful life. But then, God called him. God came to him and told him that he had a plan for him. A plan for him to be a leader for the entire nation of Israel. To rescue them from oppression. And he answered God's call. From a burning bush. For a hard job. That did not make sense. But by faith, Moses stepped from the comforts and peace of his life to follow the plan God had for his life. When Pharaoh would not let the people go, when the people grumbled in the wilderness, when they worshipped other gods when Moses went up the mountain, he continued on. His circumstances did not change... As a matter of fact, his circumstances kept getting worse. More whining. More grumbling. But he kept looking to God's plan for these people.  In the end, he never even got to live in the land God had promised to the people. But by faith, he knew that what he was doing was a part of the bigger plan for the people of Israel.

So what part of my perspective needs to change? How can I catch a glimpse of God's perspective of His plan for my life living with MS? Even when I am feeling overwhelmed? Here is the beautiful thing: trusting God has NOTHING to do with following my feelings. I can feel completely overwhelmed but God's plan for me never changes. I can feel sad about being unable to write a card to friends because it hurts my hands too much. But God is still there. I can be happy that I am having a good day, and go out and have lunch with my fabulous mother in law. And God is still working His soverign plan for my life. Always. And by faith, I am going to try and follow and believe that. My circumstances will not change. But I hope to one day see, even if I don't get to live there, a glimpse of the Promised Land that God has for me as a result of these hard times. And until then, I will walk by faith through this valley, through this storm, and let God take my hand.

Restoration

For the last few months, we had been "operating under the assumption that Multiple Sclerosis could be the cause for my current problems." This week the Official Diagnosis came in. I had a spinal tap after an exacerbation where I had lost some vision. In spinal fluid, there are certain markers that are apparent in 95% of patients with MS. After almost 8 months of tests and worry and fear and more tests and more worries and more fears, the spinal tap finally came back as positive for Multiple Sclerosis. An answer. A diagnosis. More fear.

Unfortunately, right now, there is no cure for MS. And it is a nasty, nasty disease. Basically, your white blood cells see your brain and spinal cord as something bad that needs to be attacked. When this happens, the myelin sheath on your nervous system is eaten away, and it causes nerve impulses to not transmit correctly through your body. Nerve impulses for things like walking. Speaking. Thinking. Moving. I am learning that my vision can go. That getting too warm causes me to pass out in a restaurant. That there will be times I can barely move my extremities. Here is a great video that explains the science of MS.

Yesterday I opened my health record app through my doctor's office on my phone. I noticed something new had been added to my health record. There it was: Multiple Sclerosis.

I have been hearing the "possibility of MS" since August. But when you see it there, written in your health record, staring back at you, as a finality, it stinks. Like hardcore. It isn't going to change. It is what it is. A disabling, permanent, horrible disease.

And then the fear came. Fear of living like this. Fear of more episodes. Fear of the unknown of how this body will react with my body. And then anger. Why me? How could this happen to me? Why is God allowing this to happen? Why is He not stepping in and doing something about this? Do I not matter?

Right now it is the season of Lent in the church. A time of preparing ourselves for the celebration of Christ conquering fears, our anger, our sorrow and bringing forth new life. Today I was listening to a sermon, and the pastor was preaching on Jesus healing a leaper in Luke 5. This man, whose body was completely ravaged by disease, says to Jesus, "Lord, if you wish to, You can heal me of this disease." Jesus then says, "I do want to." and the man is healed (more on this in a moment).

This REALLY sat raw with me for awhile. Lord, if you want to? Why would God not want to heal me? Why would he say, "Yes" to heal some and "Nah, don't feel like it" to others? Still, right now, I don't really understand why this interaction happens with these words. I do believe that God's desire is not for us to suffer. It is not his ultimate plan for me to be filled with pain and sorrow all the time. But I also am filled with a realistic faith that there is not a cure for this disease.

I did have someone tell me a quote this week that, "healing is the restoration of meaning to life." I really found this powerful. Physical healing will most likely not be in my future. Yet, to have restoration of meaning to life, that is possible.

Meaning to life in friends supporting me.

SPE Friends dressed in orange

Sandy and Nora wearing their orange

Meaning to life in fighting with all I got.

Steroid treatments to fight an "episode"

Meaning to life in learning new limitations. Meaning to life in soaking up beautiful spring days. Meaning to life in LIVING life through it all.

And I do believe that God can orchestrate this healing and WILL. When Jesus healed the leper in the passage in Luke, it says that Jesus touched the leper. I learned from the sermon today that this was hugely significant. Lepers were "unclean" and were not allowed to interact with people in the Jewish culture. When Jesus touched this man, Jesus also became "unclean." He took on the sickness, the sorrows, the disease, the status of this man. He took it on and he told him it was no more. He healed this man and restored meaning to life for this man. He was able to return home, return to the temple to worship, return to a life. Jesus met this man in his ashes, in his mire, in the pit, and made something new and beautiful in his life.

Right now I still feel very much in the ashes, in the mire, of this diagnosis. Yet, during this time of preparation to celebrate new life in Easter, perhaps it is a time where I can prepare for a resurrection of my new self. A self that has restoration of meaning to life through Christ's love. A self that is broken, but made new by God. A self that sees the hand of God reaching down and touching me with all my infirmities and sorrow, and still is able to make something beautiful and new.

Be held

I am very medically unique. (That sounds better than "just short of a disaster of a body")

3 back surgeries in 13 months.

A spinal cord stimulator implant (I have met one other person in person who has one)

Severe nerve damage and beginnings of RSD like symptoms.

Still fairly bad back pain at times.

And now MS.

I often feel VERY alone. Trying to describe what it is like to live through every day to other people in itself exhausts me. I often feel like many people have no idea and could never understand what a day in this body is like. I feel like I am living on my own little island of medical disaster. 

I think that often I tend to REALLY push people away when I am having a bad day. I clam up. I shut down. I cave in on myself. I have been told many times when I am really in my hole of defeat and despair, "Don't attack your support system!"

And I feel often like God has forgotten about me. And things keep piling up and making me feel worse and worse, I wonder sometimes if God is even listening to my pleas for comfort and peace and to feel Him walking beside me and decrease my pain. And I cave even more inward.

This evening, I was driving home and heard the song, Be Loved by Christy Nockels. The words spoke deeply to me.

Have you ever let yourself be held by the one who holds this world

Have you ever told your soul to rejoice that His arms are open wide

You could even try to run away but He'd come running after you

So just be held, be held, He holds you

As these words came over my speakers, tears rolled down my face. When we turn inward and focus on our pain, it is so easy to miss all the love that is around us. All of those who are praying for me (many who I do not even know.) A caring husband who is always there for me to cry on, keeps me fed and stays by my side, even when I try to push him away. Friends who are always there to listen and make me laugh. A God who does love me, who welcomes me back even when I try to run away. Why is it so hard to let myself be held by those who love me? Who care for me? 

It is so easy to turn inward and wallow in your misery. You make yourself vulnerable when you open yourself up to be held by people. To be loved by people. To run into open arms that are always there, no matter what you do. It is easier to let yourself focus on your pain instead of open your wounds and scars for others to see. But oh, the rejoicing and ability to let go when you let yourself be held.

Christy Nockels has another song, Healing In Your Hands, that also brought tears to my eyes this week.

No sickness, no secret

No chain is strong enough

To keep us from Your love

To keep us from Your love

How deep? How strong?

Now by your grace I stand

Healing is in Your hands.

 Maybe for you it is not a disease or a pain problem. Perhaps it is fear. Perhaps it is stress. Perhaps it is anger. Perhaps it is a broken relationship. But if you can reach up to peek your head out of your hole, you can see the love around you. From people. From God. From the beauty of creation. And oh, the healing that can take place from this love, and from letting someone hold you.

Thank you to my support system... To my friends, my family, my God, who never cease to love and pray for me, and who always are there with arms open wide, and let me just be held. So much love to you.

Truth is...

In January we went back to the doctor to discuss all my "issues". With some new evidence in my symptoms, I was offered treatment for MS. Some of my new symptoms "suggested the presence of other lesions" which could give me a diagnosis. We decided to wait for now and see if there are possibilities for us to have a family before fully delving into this diagnosis.

Since all this started, I was pretty sure with my research that I was probably dealing with MS. I was not surprised and shocked when the doctor finally said he thought that was my diagnosis in January. I had spent time grieving all of it back about September. But I always hoped that the symptoms that I was experiencing would have a time of "remission". That there would be times again that I might go back to normal.

Doctor said probably not. The damage has been done to my central nervous system. I will probably never get the feeling back and the constand, unrelenting horrid pain out of my hands. I will probably feel constant fatigue for the rest of my life. I will get "buzzing" in my feet frequently and experience bad vision issues.

I am also 29.

If I live a "standard" life, I have another 40ish years to experience these wonderful things. And these are just the constant things... It doesn't count waiting for another debilitating flare-up, or other side effects that may continue to pop up.

40 years.

When I look at it this way... Whew. That is completely overwhelming. Sometimes a day is hard enough to get through, let alone a week... And I have to deal with this for YEARS?

Recently, I have had some people say, "I am praying for full healing for you." How nice would that be? Complete healing? And so many people are praying for that for me. For a miracle. For no more pain. For full restoration. Not dealing with this for years.

And yet, I wait.

If so many people are praying, then why the heck am I still sick? Why can I only play music with lots of pain? Why do I feel like I am going to collapse from exhaustion most of the time? Come on God, are you there? I am praying this, others are praying this. Do I not have a heart right with you? Are you not listening? Are you even real? Because if you are, I am pretty mad at you.

I recently started a book called, "The Storm Inside: Trade the Chaos of How You Feel for the Truth of Who You Are" by Shelia Walsh. In her book, she talks about how no matter how you feel, you must hold on to the truths that you know. The Bible is full of examples of heartbreak, sadness and despair.

9 Even still, I will say to the True God, my rock and strength:
    “Why have You forgotten me?
Why must I live my life so depressed, crying endlessly
    while my enemies have the upper hand?”
10 My enemies taunt me.
    They shatter my soul the way a sword shatters a man’s bones.
They keep taunting all the day long,
    “Where is He, your True God?”

-Psalm 42:9-10

Yet,  no matter what I am feeling, there is truth. Even when I am feeling like I am alone, truth is... I have a huge support structure of family and friends. Even when I feel like I cannot go on, truth is... There is strength and smiles that get me through every day. Even when I feel like 40 years is too long to live like this, truth is... I will be blessed with many things that are not defined by my illness. And when I wonder why God doesn't love me enough to grant me healing when many others are healed of illnesses, truth is... His affection and love run deeper than I could ever comprehend.

The Eternal your God is standing right here among you

and He is the champion who will rescue you.

He will joyfully celebrate over you;

 He will rest in His love for you; He will joyfully sing because of you.

Zephaniah 3:17

And as I hold on to those truths, instead of how I feel, the hope will follow. Walsh writes in her book, "...truth leads to hope. Truth is a lighthouse on a stormy, pitch-black night that steers us clear of the feelings that would wreck us." Psalm 86:11 says 

O Eternal One, guide me along Your path
    so that I will live in Your truth.
Unite my divided heart so that I will fear Your greatname.

So, truth is... This is not an easy path. Truth is... I will have many hard days. Truth is... I will have many more tears shed over it in the rest of my journey.  Truth is... I am NOT alone. Truth is... I may not be healed ever. But Truth is... How He Loves Us So. Truth Is... All of a sudden, I am unaware of these afflictions eclipsed by glory. Truth is... How great His affections are for me.

How wonderful that all these remain true, today, tomorrow, and in 40 years, no matter what I am feeling.