clarity

chronic illness, depression, grief, Uncategorized

This year has been a year of wild, untethered growth. I feel light years away from who I was last year, even who I was a couple months ago. It’s strange how pain changes a person, I’ve been thinking a lot about it lately. I am a different person when I am in pain. I have a hard time communicating, I immediately go into fight or flight, my emotions become much more intense, and a lot of the times my depression seeps back in. I am just coming out of a big wave of pain and I was surprised by how hard this one hit me. For some reason I expected that I should have this down by now, but now I’m not really sure you ever can. I’m finding that pain brings me to uncharted territory each time I’m engulfed in it. I am not myself when I am hurting, but all of the hurting as led me here, to this. All of the pain has shaped me, from the girl who was obliviously soft to a person who is content with remaining rough.

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This summer surprised me. I have spent the better part of the last four and a half years wrestling with hope. I’ve had too much hope and have been left completely discouraged and I have lost all hope and found myself in absolute darkness. I have tried to accept that my future will most likely be tainted by being in chronic pain, even though people tell me things like you’ll grow out of it and you never know, maybe one day you’ll wake up and it’ll just be gone. I’ve tried not to listen much to people who say things like that because my pain free days have been scattered and scarce, until this summer.

The beginning of the summer came like so many others, high hopes I forced down low and a bout of emotions I couldn’t seem to sort out. And no matter how much I prefer to not talk about it, I was struggling with my faith. I went to church camp for a couple weeks, just like I have almost every summer since I was a little kid. It was there, sitting in a crappy camp chair, swatting bugs away from my pale legs in the middle of worship that I heard God speak to me. I finally heard Him. After years of being told that I am being prayed for, after all the tears of desperation I’ve cried over not being able to feel those prayers, I finally heard Him.

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God’s timing is bizarre. I wish I could eloquently word how monumental that moment was for me. I was fanning myself with a worship booklet, fighting the July heat, as if it would’ve made a difference, when I gained more clarity than I could have ever hoped. I gained more peace than I thought I could ever feel, more contentment than I thought I needed, and more confidence in God’s plan than I could have ever anticipated. I am still trying to fathom it, the words I heard God whisper into my ear and the people he perfectly placed in my life.

After that I went nearly six weeks without having a migraine. I didn’t have to take my rescue medicine, I didn’t have any anxiety, I felt free. It was almost as if my anxiety evaporated right off of my shoulders and with it went the weight that had been wearing me down. That was the longest I have gone without having a bad migraine in almost five years. I never thought I would be able to look into the eyes of someone who has been praying for me all of this time and say that I have had some kind of relief.

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I am just coming out of the whirlwind of pain that followed and it has been a hard handful of pills to swallow. I am starting to think that it never really gets easier, the transition from highs to lows. I think that is something I am going to be constantly learning how to deal with. Maybe I will never get better at maneuvering such drastic transitions, but I know I will have grander highs than this one.

I am nowhere near done growing. As I am writing this I feel an urge to keep moving forward, to find more growth. I can clearly see all of the things that have been holding me back, all of the things I need to work on. I still find myself getting angry with me for being in pain, for not functioning like the people around me. I still breakdown and get upset over a pain I cannot control, a pain that is out of my hands. I get trapped by my irrational thoughts, a voice in my head that tells me I am a burden to everyone in my life when I am struggling. And even though I recognize the difference between my irrational thoughts and the rational ones I still find myself giving in and believing them anyway.

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I know that grief is still holding a piece of my heart hostage. I know that irrational thoughts are going to continue to ring through my ears. And I know that I am going to have more whirlwinds of pain that knock me down.

But I have found bliss. And I know that my contentment is here to stay regardless of whatever pain comes crashing into me. I may not be myself when I am in the midst of pain, but without the pain, without my past, I would have never arrived—so wondrously and viciously by design—here.

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You can hear the songs I was listening to when I wrote this here.

growth

chronic illness, depression, grief, Uncategorized

I’m just going to dive right in, this year has been bad. My anxiety has been at an all time high, I’ve had writer’s block for months, and I’ve spent most of this year floating in my grief.

I rang in the new year on a mission trip with some of my church family. It was an incredible trip, eye opening for me in so many ways, but when I was on my way home I got news that forced my eyes closed. I remember feeling clear contentment at New Years. I don’t remember how I got there and I don’t know why I’ve spent the last seven and a half months trying to find it again.

I lost two people within a few days when I got back into the U.S. from our mission trip and to say the loss threw me off my feet would be an understatement. These two, were two that fought for their health, through their pain, and with all that they had. They were constant reminders to me that I had it in me to fight too. I held them close to my heart, I still do.IMG_20180717_0006Grief has this not so funny way of swallowing me whole. The loss this year came three years after the last, and the last was the one that left me at my darkest. This time instead of crumbling down and drowning, I froze with fear that I would end up back at my darkest, or somehow somewhere even worse.

I was living in this state of fear and panic that I would get too depressed, maybe even suicidal. But instead of falling into the void of my depression, I was just anxious about the possibility that I could. I couldn’t even admit it out loud. I couldn’t even say it to myself.

I am anxious that I am going to get so depressed again because the last time someone I loved died I crumbled into so many pieces I still feel like I am gluing myself back together. I am exhausted, I don’t think I can keep gluing myself together piece by piece only to become someone I don’t recognize.

How is it possible that I, the person who has repeatedly opened up about my struggles with mental health to those around me and those not around me at all, can’t admit that I’m struggling?IMG_20180717_0001.jpgHey mom, hey dad, I’m struggling.

It took me months, but I managed to get the words out. It’s hard for me to wrap my head around, the fact that I can talk about my mental health with a complete stranger and tell people that I see a counselor regularly, but when I am struggling I can’t say anything at all.

It took nearly 6 months but I finally felt an overwhelming sense of peace. I was in Zion National Park hiking and I had fallen behind the people I was with because I was having a bad pain day. I stopped and sat beside the trail on a big rock near the river and waited for them to find me. I sat there for about an hour and it was almost as if peace poured down over me. I was staring at the cliffs all around me and started singing in my head the lyrics from a song we’ve sung in worship from time to time. The words played on a loop in my head “and I will climb this mountain with my hands wide open” and I realized how absurd it is for me to be mad at myself for struggling. It was in that sacred moment of peace that I forgave myself for having a hard time.IMG_20180717_0003.jpgThe immense feeling of grief has slowly faded. I no longer feel like I am slowly gluing myself back together. I’m not worried about falling back to my darkest. And I have never felt so strong in my faith.

Throughout the past four and a half years I’ve done everything in my power to protect myself. I’ve closed my heart off. I’ve pushed people that I love away. I have been in and out of fight or flight mode for far too long. This year has broken me down and forced me to realize so much through Zion and spending time at church camp. I’m done having the mindset that I have to get better before I can let anyone in. I’m done shaming myself for struggling. I’m breaking down the walls that I’ve been building up around myself ever since I got sick. I’m done hiding just because I’m not where I want to be. I have overcome, and because of that I am more myself than I have ever been.IMG_20180717_0002.jpgIMG_20180718_0005.jpgIMG_5623.jpgYou can hear the songs I was listening to when I wrote this here.

 

waves

chronic illness, depression, keeping the faith, Uncategorized

Sometimes I picture myself floating in the ocean back in forth between big waves and baby ones. I get such strong and overpowering feelings, often ones that are much bigger than me. Feelings that are drowning. There are times of peaceful and calming waves and then there are storms that can last days, weeks, even longer. The waves overpower me some days and others I conquer them. The ocean is vast and intimidating and most of the time so are my thoughts and feelings. What if I never face another day when I’m not in pain? How am I supposed to function in the real world? What if I am never well enough to have and keep a real job? Will I ever stop feeling inadequate?

The Chronic Chase

I get this burning, terrifying feeling that I am inadequate. It’s a reoccurring feeling that I have yet to shake. I know I have had it for awhile but it wasn’t until my illness grew louder that I really heard it. It feels like everyone else is moving at the speed of light in comparison to me. I am moving through life at my own pace and there are moments where I am truly happy to be slowing down, but yet there are still these overpowering waves that drown me in inadequacy. The water whispers into my ears and tells me these feelings may never go away. I try and drown out the sound of the waves with music but somehow the perfect melodies know how the waves make me feel. The melodies know me better than the person floating next to me.

The Chronic Chase

I think there’s an unspoken expectation most young people feel to go to college as soon as you graduate high school and to finish it in a mere four years. We have a small window to figure everything out and then as soon as it closes we have to automatically have it all together. I think most of us even realize how ridiculous this is but we still see “everyone” around us have it all together and frantically try and do the same. Everyone is getting married, everyone is getting a grown up job, everyone has it together.

The Chronic Chase

I took a medical leave from school for a year and it was somehow one of the hardest and best decisions I’ve ever made. I wasn’t just floating in the midst of waves back then—I was drowning in tsunamis. I had this idea in my head of who I needed to be but I was dealing with being extremely sick. I wasn’t able to function at all. So I packed up and left behind the life I had been creating with my friends that felt more like family. I moved back home with my parents after tasting freedom, and while my life was in a complete standstill everyone else was still moving. Everyone kept moving along, moving on. And while my feet were unable to move and my body was weighed down the ocean seeped in, to whisper all the secrets she keeps. Suddenly I was out in waters I did not know. Feelings I did not want forced me to toss and turn. I was missing out on the life I had that everyone else was still living, I still am. I don’t feel equipped to handle school. I don’t feel good enough. I feel like I’m drowning.

The Chronic Chase

Last year when I was taking my medical leave I made a promise to myself. I was in the middle of one of the largest tsunamis of my life between tumor scares, the ever-present migraines, insomnia, endometriosis, PCOS, coming down with Mono, and still dealing with some level of my depression. I was drowning. I couldn’t move. I lived in one of two pair of leggings and a XXL sweatshirt that I referred to as my Mono clothes. It was all I could do to walk up the stairs to my room at night and would take me an hour to stand up to go to the bathroom. I sat in the same chair for months staring. Staring at screens, books, the ceiling. I watched movies and too much TV, I read books my mom would say are depressing, and I’d scroll on my phone or computer all day just staring. Staring at pictures of people I used to be standing beside, pictures of me, the person I felt the most distant from. I felt like a shell of a person just floating in the ocean waiting to see where I would land. So I made a promise to myself. A promise that I would focus on me and only me.

The Chronic Chase

You see, I’ve been a people pleaser for as long as I can remember. I have bent myself over backwards trying to keep other people’s happiness alive more times than I can count. I still think it’s important to be there and help everyone as much as you can. But I no longer allow myself to drop taking care of me for anyone or anything. I realized I owe no one an explanation of my health because it’s mine, and mine only to share. That was earth shattering for me and I don’t know why. Why would I need to share with everyone what goes on in the most intimate parts of my mind? That’s where the answers to the “how are you?” and “are you okay?” questions remain. I am out in the ocean drowning and people expect me to shout to the shore if I’m okay.

The Chronic Chase

So I decided, I promised myself, to ignore what everyone else was screaming and listen to myself. No matter if the waves were screaming I would tune them out and hear myself, what I need.

The Chronic Chase

 

It is in the unknown waters that I find comfort, that I find peace. I don’t know where I am or where the waves are taking me but somehow, through it all, my faith not only remains, it is stronger. I have not only survived out in the ocean I have thrived on faith. I have had and will continue to have drowning moments but I don’t ever fully drown. The Lord gives me all the strength I need to survive out in this vast and intimidating ocean. Some days I feel the waves sink in telling me I am inadequate but as fast as they crash in the Lord tells me I am beloved.

she is water

To watch the video for this post click here.

Matthew 14: 24-36 (NLT)

“Meanwhile, the disciples were in trouble far away from land, for a strong wind had risen, and they were fighting heavy waves. About three o’clock in the morning Jesus came toward them, walking on the water. When the disciples saw him walking on the water, they were terrified.

In their fear, they cried out, “It’s a ghost!”

But Jesus spoke to them at once. “Don’t be afraid,” he said. “Take courage. I am here!”

Then Peter called to him, “Lord if it’s really you, tell me to come to you, walking on the water.”

“Yes, come,” Jesus said.

So Peter went over the side of the boat and walked on the water toward Jesus. But when he saw the strong wind and the waves, he was terrified and began to sink. “Save me, Lord!” he shouted.

Jesus immediately reached out and grabbed him. “You have so little faith,” Jesus said. “Why did you doubt me?”

When they climbed back in the boat, the wind stopped. Then the disciples worshiped him. “You really are the Son of God!” They exclaimed. After they had crossed the lake, they landed at Gennesaret. When the people recognized Jesus, the news of his arrival spread quickly throughout the whole area, and soon people were bringing all their sick to be healed. They begged him to let the sick touch at least the fringe of his robe, and all who touched him were healed.”

Songs I Was Listening to When I Wrote Waves

If you want to listen to the songs I was listening to when I wrote this click here.

the words we say

chronic illness, depression, keeping the faith, Uncategorized

There’s a poem I heard about two years ago that changed my life. Now know what I mean when I say this poem changed my life. I mean that it made a huge impact on me, my mind and my heart, it not only spoke to me but it taught me about myself, it made me not feel alone and so crazy, these words are in my mind and I think of them very often. When I first heard this poem I saw the author read it to a crowd in a video and there was something about the way she read it, I felt it with her. IMG_2530.JPGWhen I looked up the poem and read it for myself I began to cry because I wasn’t just feeling for her I was reading what I had been feeling in almost the perfect words. This poem was written by Sabrina Benaim and is titled “Explaining My Depression to My Mother: A Conversation.” The mom in this poem, to me, represents people and how I have felt trying to explain what I went through with my depression and what I still deal with to others. Both my mom and my dad were incredible when I was in my darkest days and have never questioned my depression for a moment, and for that I am grateful.

 

Explaining My Depression to My Mother: A Conversation

By Sabrina Benaim

Mom, my depression is a shape shifter.

One day it is as small as a firefly in the palm of a bear, The next, it’s the bear.

On those days I play dead until the bear leaves me alone.

I call the bad days: “the Dark Days.”

Mom says, “Try lighting candles.”

When I see a candle, I see the flesh of a church, the flicker of a flame,

Sparks of a memory younger than noon.

I am standing beside her open casket.

It is the moment I learn every person I ever come to know will someday die.

Besides Mom, I’m not afraid of the dark.

Perhaps, that’s part of the problem.

Mom says, “I thought the problem was that you can’t get out of bed.”

I can’t.

Anxiety holds me a hostage inside of my house, inside of my head.

Mom says, “Where did anxiety come from?”

Anxiety is the cousin visiting from out-of-town depression felt obligated to bring to the party.

Mom, I am the party.

Only I am a party I don’t want to be at.

Mom says, “Why don’t you try going to actual parties, see your friends?”

Sure, I make plans.

I make plans but I don’t want to go.

I make plans because I know I should want to go.

I know sometimes I would have wanted to go.

It’s just not that fun having fun when you don’t want to have fun, Mom.

You see, Mom, each night insomnia sweeps me up in his arms dips me in the kitchen in the small glow of the stove-light.

Insomnia has this romantic way of making the moon feel like perfect company.

Mom says, “Try counting sheep.”

But my mind can only count reasons to stay awake;

So I go for walks; but my stuttering kneecaps clank like silver spoons held in strong arms with loose wrists.

They ring in my ears like clumsy church bells reminding me I am sleepwalking on an ocean of happiness I cannot baptize myself in.

Mom says, “Happy is a decision.”

But my happy is as hollow as a pin pricked egg.

My happy is a high fever that will break.

Mom says I am so good at making something out of nothing and then flat-out asks me if I am afraid of dying.

No. I am afraid of living.

Mom, I am lonely.

I think I learned that when Dad left how to turn the anger into lonely — The lonely into busy;

So when I tell you, “I’ve been super busy lately,” I mean I’ve been falling asleep watching Sports Center on the couch to avoid confronting the empty side of my bed.

But my depression always drags me back to my bed

Until my bones are the forgotten fossils of a skeleton sunken city,

My mouth a bone yard of teeth broken from biting down on themselves.

The hollow auditorium of my chest swoons with echoes of a heartbeat,

But I am a careless tourist here.

I will never truly know everywhere I have been.

Mom still doesn’t understand.

Mom! Can’t you see that neither can I?

 

This poem was groundbreaking for me. I think it was the first time I had read something so powerful that hit me like a freight train screaming this is me. The last line of the poem is what I have felt like I’ve been screaming unheard screams for years. People tend ask me a lot of questions trying to understand what is happening to me. It’s not as difficult for me now as it was at first. At first, while I was in a whirlwind of medical madness, it was like I had fallen down the rabbit hole and everyone was looking into the hole screaming at me for explanations of what was happening. But the hole was dark and I couldn’t see anything at all, I could see no explanations not even something right in front of my face. I couldn’t find the words in my head and string them together to tell anyone that I was more curious and confused than they were.

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I spend a lot of time thinking and reflecting on things I have gone through and I think one of the big things I’ve learned is that we have no idea how we impact other people’s lives. The things we say and do may not mean much to one person but it could stay in the foreground of another person’s mind for most of their life. Words that don’t hurt someone may completely break another. I will never forget the stupid and insensitive things said to me about my depression and anxiety. In fact, there are some words and conversations I had years ago that I still think of often, though I wish I didn’t. Some words you choose to hang on to and others hang on to you.

 

I think there are make or break moments in life. There are times when we have the opportunity to build others up or tear them down, and I think a lot of the time when don’t realize it until it’s too late or maybe even at all.

 

When I hit 3 months of being in pain I was officially diagnosed with a chronic intractable migraine (meaning I had a migraine that wouldn’t go away). When my doctor sat me down and gave me what I refer to in my mind as the “chronic talk” he also told me he wanted me to see a psychologist. IMG_2525.JPGThis doctor was my angel on earth so even when he told me he was concerned I was dealing with depression as a side effect of being in chronic pain, he didn’t upset me. It felt like he saved me, I just didn’t know what from yet. So he told me I would need to see the clinic’s psychologist each week to work on how to cope with pain. I honestly had no understanding of depression. I didn’t know what it truly meant, I couldn’t recognize it, and I definitely didn’t know it when i felt it. So when the only person left that I hadn’t completely shut out met me in one of those make or break moments and said the worst possible words I felt myself slip away. Those words chose to hang on me and the conversation plays on a loop in my head on my darker days.

 

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There’s something about being told it’s all in your head that never leaves you. I know I’m not crazy now, but when you trust someone immensely and they tell you that it’s all in your head and you’re in your most vulnerable state what do you do? My world at that time was waking up and going to my doctor’s office almost everyday for IV infusions where I spent most of my time sedated in hopes I’d wake up in no pain. The only people I saw were my parents, my doctor, and the nurses. It took me hours to send a text to a person who I desperately wanted and needed to tell me it was going to be okay.

 

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Words matter more than we could ever realize. They affect each person in a different way. It is beyond crucial to think before you use your words. Sometimes something that is funny to one is offensive to another. Sometimes something that flies past one’s ear sinks like quicksand into another. Remember God spoke the earth into motion with His words, they’re that impactful. He created us all individually so that we may not only be different, but feel differently as well. We all have pain and struggles, some may even look alike, but we do not feel pain the same way. I know now that I’ve been through a lot, that in those make or break moments it is good to lean on those around you, but it is imperative to lean on the Lord. While some words will always stick stronger than others, they hold no comparison to God’s words.

 

 

Colossians 4:6 “Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone.”

Ephesians 4:29-32 “Let no corrupting talk come out of your mouths, but only such as is good for building up, as fits the occasion, that it may give grace to those who hear. And do not grieve the Holy Spirit of God, by whom you were sealed for the day of redemption. Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice. Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you.”

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If you want to listen to the songs I was listening to when I wrote this click here.

hidden love

chronic illness, keeping the faith, Uncategorized

Growing up I always really loved reading, I still do. But I’m not one to pick up a new book immediately after finishing another. Usually a book impacts my mind and my heart so deeply I become completely consumed with feeling everything the author wrote. I can spend weeks sometimes even months hanging on words from just one story. I am obsessed with stories. I think we all are.

 

When I was younger I had an extreme obsession with an author who only wrote about young love that almost always ended with one half of that love dying. A lot of people hate to love books and movies about illness and love. I wonder about stories that deal with my kind of ongoing and confusing illness, what about an illness like mine and love? Where no one dies and the illness is dragged out indefinitely. Where there’s not some dramatic and dying element but there is a constant pain that never seems to go away. Sometimes it’s dull but other times it’s banging, beating, screaming. What about a love that goes on and doesn’t have some miraculous fight but goes through the pain that lasts longer than anyone cares to hear about?

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I am infatuated with stories. I love watching them on screens, reading them in books, in magazines, and online, being told them in person, and telling them myself. There’s a burning feeling I get after a story hits me hard, it’s a bittersweet burn that hurts but it lights a fire through me where I can’t shut off my mind. I can’t stop thinking about it, feeling it over and over, I feel the pain and the love and it makes me want to create something. It puts a story in my head I had never thought of before, it makes me paint because I’m feeling too much, it makes me feel things I never knew I could. Stories make me feel so fiercely that I’m reminded why I am alive.

 

I told you I had a deep obsession with an author. Her name is Lurlene McDaniel. She wrote about cancer, organ failure, horrible diseases, that all ultimately end in death. But every book I read of hers had this seemingly beautiful relationship. There was one person going through this horrifying struggle with their health, who is ultimately dying and the other is this amazing support system that doesn’t waver.

 

Honestly, this probably wasn’t the best thing I could’ve been fixating on. It put this idea in my head that when you’re sick you automatically have someone that isn’t related to you and doesn’t have to go through your sickness with you but chooses to be there for you regardless. When I first got really sick my last semester of high school I was in a relationship and had been for awhile. I didn’t realize it at first, but what all of those stories I had read and been so attracted to were missing was how hard it is to be in a functioning relationship when your entire world is now unfamiliar territory. In a traditional wedding ceremony there is that line that is said, “for better or for worse, in sickness and in health,” where you promise to be there and love your partner no matter what. But when you’re dating and you’re so young there is no covenant made to be broken, there is nothing that says you’re expected to hang around through life altering challenges. You can’t expect someone to flip their world upside down and join you too, you hope for it, but you can’t ask them to.

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When I got really sick my senior year I was in a whirlwind and I didn’t know what to anticipate. I didn’t know how serious things were or if I would be better the next day or in 2 years. When you’re in constant pain and being “normal” is such a challenge it’s hard to know what to expect of people around you. I still read books about illness and love sometimes because they’re so interesting to me. I look back on my own journey and the people who have been there for everything are my parents. My mom goes to all of my doctors visits with me and if she can’t be there my dad is or my aunt. I’ve learned it is really hard for someone to go through something with you when they’re not there witnessing it firsthand, seeing everything that you’re going through. Those stories put this idea in my head that there would be someone else who didn’t have to go along but chose to because they loved me enough to go through every dark day with me until I had a good one.

I’m not going to lie to you, after all I promised to be as transparent as I can. My faith has been a wreck more than it’s not been throughout my time being sick. I’ve spent a lot of time being mad at God and ignoring Him, sometimes intentionally and sometimes not. I get preoccupied with my anxiety over appointments and treatments or when the pain feels like it’s never going to let up to get even the slightest relief and I forget. I get so busy trying to hang in there and just survive that I forget about who has been by my side the entire time, even when I’m alone and I think no one sees me fall apart. I spend time wondering why I am not like the people in the stories who has that person who chooses to be there through the chaos of sickness, when all along God has been beside me. I’ve been angry, broken down, confused, emotional, unemotional, and have chosen to ignore Him and yet He still stays. He chose me, He loves me, and He walks with me, even through my darkest days.

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Zephaniah 3:17 “The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.”

Psalm 139:1-18, 23-24 (NLT)

“O Lord, you have examined my heart, and know everything about me. You know when I sit down or stand up. You know my thoughts even when I’m far away. You see me when I travel and when I rest at home. You know everything I do. You know what I am going to say even before I say it, Lord. You go before me and follow me. You place your hand of blessing on my head. Such knowledge is too wonderful for me, too great for me to understand! I can never escape your Spirit! I can never get away from your presence! If I go up to heaven, you are there; if I go down to the grave, you are there. If I ride the winds of the morning, if I dwell by the farthest oceans, even there your hand will guide me, and your strength will support me. I could ask the darkness to hide and the light around me to become night—but even in darkness I cannot hide from you. To you the night shines as bright as day. Darkness and light are the same to you. You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex. Your workmanship is marvelous—how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me God, the cannot be numbered, I can’t even count them; they outnumber the grains of sand. And when I wake up, you are still with me. Search me, O God, and know my heart; test me and know my anxious thoughts. Point out anything in me that offends you, and lead me along the path of everlasting life.”

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If you want to listen to the songs I was listening to when I wrote this click here.

finding hope

chronic illness, keeping the faith, Uncategorized

I’ve written this post, my first blog post, a few times now because I am not exactly sure where to begin. So many things have happened to me this year, the past few months even. There are a number of things I have to say, to explain, to update you on, and bring awareness to. If you’re reading this I imagine you either know me, or knew me, you’re curious, or you’re looking for someone to relate to.

Whoever you are, I want you to know that I will do my best to keep writing, to be as transparent as I know how, to do my best to explain what is happening or what has happened, how it feels and how I am doing. And most importantly keep the faith.

I want you to know how much I have been praying about this blog. It’s not something I have taken lightly. It’s a big step for me to share what I write about my health and how being in chronic pain impacts my life everyday.

It’s been a little over a year since I shared my story through a movement call 7 Billion Ones. The feeling of writing it was freeing, but the feeling of it being shared online was invigorating. The response after my story was posted was remarkable, and it’s led me here, to this.

It’s been almost seven months since I woke up with such severe joint pain that I couldn’t walk without falling to the ground in tears. A few days before I felt it coming, it had been almost two months since I started having weird knee pain. It was right after Christmas and I was in the airport with my dad when I realized my knees were acting up. I honestly didn’t think much of it because I had knee surgery over six years ago and was told my other knee would probably need it too. From that moment of me trying to keep up with my dad walking through terminals in the Dallas airport, the weird knee pain kept on. It was strange, but I didn’t really think much of it. Not until my ankles started hurting and walking up the stairs became a marathon and the word “ow” popped up in my mind at least 50 times a day. I laughed it off making jokes about how I didn’t know when I had my 21st birthday I was really turning 89. Meanwhile in the back of my mind I knew something was wrong but I was trained not to pay attention to the back of my mind, I was rewired to ignore pain, and now I have a hard time gauging my symptoms and pain. Is this really something or did I forget an injury? Do I have a digestion problem or am I just paranoid? Is this real or is this all in my head?

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So the weird knee and ankle pain led me to hobbling around on a crutch with severe joint and bone pain all over my body. Not just on my knees and ankles but my hips, shoulders, elbows, wrists, hands, and feet. Then it led me to multiple kinds of physical therapy, the main one being pool therapy, which I could have never imagined being in. I was in the warm water pool with the people who have arthritis, the 80-somethings who are on walkers, who have kids and their kids have kids, and then there was me. The twenty something girl who has bags filled with unanswered questions and who once could hide her illness with a smile but all of a sudden was seen by everyone because she carried a crutch. I began bonding with elderly people at the gym and at physical therapy. There was one woman who was 81 and had recently had a double knee replacement who was laying next to me doing the same exercise. It was an exercise where you lift and lower your leg, something so basic, yet unnecessarily hard making me feel like my body and my youth were robbed from me.

I’ve been off my crutch for about two months now. No doctor gave me a time table of when I would be off or when I was allowed to get off because there was no actual injury, just all consuming pain. It honestly still feels impossible to walk most days but I decided that I would rather feel the pain than to deal with a crutch for even one more day. Dealing with my crutch made people see my pain, it allowed strangers to ask me about my health and what was wrong, and it made me hide because I was so incredibly embarrassed. I’m not so embarrassed these days, but everyday brings something new and another challenge.

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Sometimes I wonder if I’ll ever stop wondering what is wrong with my body, if my future is this awkward stage where I should be fully emerged in college surrounded by people my own age doing what people in their early twenties do, but instead I’ve been spending my time trying to take classes while juggling physical therapy and all the doctors visits each week. Before this last flare up I honestly thought things were looking up, and I think now is the first time since my health madness started that things aren’t okay and I still believe they’re looking up. That is huge for me. After all of the downers in the last few years all I’ve ever wanted was hope and hope that lasts. I’ve been so exhausted that sometimes there’s no energy left to try and be faithful and have hope that this will pass. I know all of this is leading me somewhere and my faith is far from perfect but I have hope, and that’s all I’ve ever needed.

Psalm 31:1-2 (CEV)

“I come to you, Lord, for protection.

Don’t let me be ashamed.

Do as you have promised and rescue me.

Listen to my prayer and hurry to save me.

Be my mighty rock and the fortress where I am safe.”

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If you want to listen to the songs I was listening to when I wrote this click here.