My Daily Battle: My Lyme Disease Story

Disclaimer: This post is very long. Believe it or not, I actually tried to slim it down a lot. But it’s definitely hard to write about something that has consumed my entire life since I was young, and make it short. Thank you.

Processed with VSCOcam with b1 preset

I didn’t even fully know what Lyme Disease was just over a year ago. I had heard of people having it, but didn’t even know much about it. I didn’t know I had it. Today, it consumes a large part of my everyday life.

As a child, I had many health problems. I always felt alone, like I was the only little kid this sick. Everything came in waves, and then left. I begun to have Acid Reflux Syndrome when I was very young. It was so bad that I had to position myself in bed with pillows under my head. I seemed to grow out of that. And then came the insomnia, when I was about 7-10. I would lie awake almost every night, sleepless for hours. I was diagnosed with Sleep Apnea at 8 years. I went to another doctor that thought I had Narcolepsy. I was diagnosed with ADD around age 15, and put on Ritalin. I didn’t stay on that very long though, after realizing that it wasn’t doing very much for me.

I was misdiagnosed many, many times all throughout my childhood. And that’s the thing about Lyme Disease: it can be, and is, misdiagnosed as so many other things.

All during my years growing up, I was always much more easily tired than my friends, and always fatigued. It was very difficult for me to go to parties, camp, sleepovers, etc… and when I did, I would come home and sleep for a long time to recover. I couldn’t even hold the babies at church without awful backaches and pain.

I had a very difficult time all throughout school. I couldn’t remember anything that I tried to memorize. Everything was so much more difficult for me than my friends around me.

As I was moving into college my very first year, I learned that my roommate was recently diagnosed with Lyme Disease. At this point, I didn’t understand what that meant. As the semester went on, and she was being treated, I began to realize: her symptoms were very similar to mine. The descriptions of how she felt were something I understood daily. I began to have the thought in the back of my mind: could I, possibly, have Lyme Disease?

That semester started well. I had made some really great new friends, the beach was 15 minutes from campus, and I was loving being at college. But as the semester wore on, I began to wear out. My depression worsened. All of my symptoms became unbearable. There were times when I just wanted to lay down and cry because of the pain my body was going through. A lot of that semester is a blur for me now, and that might be because of my memory loss, or pain, or both. But my dear roommate was so sweet to me. And even though it was a rough semester, I’m so very thankful for her.

Over Thanksgiving break, I drove 4 hours to see my roommate’s doctor. He ordered some blood tests, one of which was for Lyme.

When I got back to college, I had to start studying for finals. I felt like a trainwreck. I was in so much constant pain, constant headache, and I couldn’t remember anything I was studying, due to brain fog.

Then my mom called me one day, and told me that my blood tests came back.

It varies, but the healthy level is about 150 and above. 20 and under is usually evident is very severe, long term Lyme. Mine was 22. 

Lyme Disease can be transferred from mother to child at birth, and my current doctor thinks that may be what happened. My mom was also diagnosed.

I began antibiotic treatment, and I was hopeful that this might cure me. I began to have a Herxheimer reaction, which is normal in treatment. The Lyme was going to fight back, and cause my symptoms to worsen, and also cause new symptoms to emerge.

But, as time went on, I realized I might not be able to handle antibiotics at that time. I couldn’t eat anymore, and they caused nausea. It was so rough on me, as I was in my second semester of college. I decided I didn’t want to drop out of college, which costed me a lot of mental, emotional, spiritual, and physical problems. I was stubborn. I finally had to quit my antibiotics, because they were too hard on me. Some days I could barely get out of bed to go to class, the pain was too much to handle.

Once I made it through that last semester, I packed up my car and left Clearwater. My doctor had a new treatment for me to try at home, called the Cowden Protocol, which is a very strong, natural, herbal treatment. I have been on it ever since, and I’m definitely noticing improvement. My joint pain has lessened, I’ve noticed clearer thinking, and more energy.

I know it’s going to take a while. I know that I have a chronic disease, that I’ve had in my body my entire life. I have to wake up each morning, with the mentality that I have to fight this. This is a battle against my body, and I’m going to spend each day attacking it. I know there are things that are never going to be the same. I’ve lost a lot of my memories of when I was younger, and I’ll probably never get them back. I may never be in the same health as many of my friends, but I’m going to do everything I can to be in the best health I possibly can be.

So many people have been such encouragements along the way so far. And I just want to thank everyone for believing in me, praying for me, and encouraging me. It means so much. I want to be open and honest about my struggles, not for sympathy or for other to pity me, but to express my feelings and struggles through writing, which always helps me greatly. And possibly, I might be able to help others who are struggling, too. And thank you for reading this far, you are truly great. :)


Here is a list of common Lyme Disease Symptoms.

For anyone interested, this is my current Lyme Disease treatment:

  • Cowden Protocol (set of herbal drops that are rotated throughout the month taken four times daily)
  • Fish oil
  • High doses of vitamin D (because I am very deficient)
  • D-Ribose
  • Co-Q10
  • Methyl Protect (to help my methylation process: because I have a genetic mutation called MTHFR that could keep me from defeating the Lyme)
  • B-12
  • iodine drops
  • phytosine (to bring up cortisol levels in the morning)
  • trace minerals
  • phosphatidylserine (to lower cortisol levels at night)
  • DHEA
  • melatonin at night to avoid insomnia
  • niacin once a day (to flush toxins)

Diet Restrictions:

  • I am very strictly gluten free
  • I try to avoid processed sugar, and I use Stevia to sweeten things
  • I try to eat very clean, with a lot of meat and vegetables and some fruits.

Other things:

  • A friend of mine owns a sauna, so I drive to her house every day and spend about 50 minutes at 140º and then take a cold shower.
  • I try to take a detox bath a few times a week. I put in a few cups of magnesium chloride flakes, some hydrogen peroxide, and a little ginger and/or lemon.
  • I do something called dry skin brushing, to help my lymph glands to process and release all of the toxins
  • I drink about 100 ounces of water a day

No One Else Can Play Your Part

IMG_2505

Today is the last day of World Suicide Prevention Week.

An organization that I love and adamantly support, To Write Love On Her Arms, created t-shirts, bracelets, posters, info cards, etc… all with the common goal of raising awareness of suicide prevention, and to help those hurting realize that they’re not alone in this struggle. If you just search #WSPD14 in social media, you will see some pretty great things.

Raising awareness one day of the year, or one week out of the year is really awesome. But this is just the beginning of something potentially incredible.

I challenge you to make this an every week, and every day event. Have conversations. Share your story. Ask the hard questions. Ask that person in your life how they’re really doing, and be there for the messy parts. People need other people, and we can really make a difference if we all work together. Your words might be the very thing that inspires someone to stay alive tonight.

And if you are struggling with the darkness, know that you are not alone. This part of your story might seem impossible, but there is still some time to be surprised. If you feel too much, don’t go. It’s okay to ask for help if you feel stuck. You are more than your drugs, more than your scars, more than your pain.

Taking the first step into recovery, opening up, and having honest conversations can be terrifying, but it is so important. And there is so much to look forward to. You are very loved. No one else can play your part.

 


 

If you need help, feel free to contact me, or check out some of these places…

1-800-273-8255 is the number for the National Suicide Hotline for those in the U.S.

IMAlive: An online crisis chat, because sometimes talking on the phone is difficult.

The Trevor Project: A suicide hotline/chat for LGBT youth.

you can make it to the sunrise: A Spotify playlist I made for when I have bad days <3

 

This Beautiful Chaos

DSCN0482

I feel like as my life moves forward, those words are going to be the constant description of it all.

Beautiful chaos. 

Amidst the decisions and choices. The dreams and the vast unknown.

Lately, the words “I don’t know” have been slipping across my lips more than is comfortable for me. And I’m not one that normally needs the rigidity of a perfectly laid plan.

Yes, it might seem like “chaos” in my limited knowledge. But there’s that undeniably beautiful part. This story that God is watching unravel. He is with me every step of the way. Through every unknown, every plan change, every “I don’t know” that I utter. Through the doubts and confusion, God is right there. Arms wide open. Beckoning, saying “Don’t worry, my darling. I love you more than you could ever imagine, and I would never let you deal with this scary world on your own. Trust in me and my plan for you. Call out to me and I will take care of you, my dear child.”

“Meanwhile, the boat was far out to sea when the wind came up against them and they were battered by the waves. At about four o’clock in the morning, Jesus came toward them walking on the water. They were scared out of their wits. ‘A ghost!’ they said, crying out in terror.

But Jesus was quick to comfort them. ‘Courage, it’s me. Don’t be afraid.’

Peter, suddenly bold, said, ‘Master, if it’s really you, call me to come to you on the water.’

He said, ‘Come ahead.’

Jumping out of the boat, Peter walked on the water to Jesus. But when he looked down at the waves churning beneath his feet, he lost his nerve and started to sink. He cried, ‘Master, save me!’ Jesus didn’t hesitate. He reached down and grabbed his hand. Then he said, ‘Faint-heart, what got into you?'” 

{Matthew 24-31 The Message}

 

Jesus did not hesitate. He reached down and grabbed Peter’s hand. And he’s reaching out his hand to you. And to me.

That, my friends, is the beauty in the chaos.

Discovering Jesus Again

“I’m doing everything they’re telling me I’m supposed to do. Do you love me yet, God?”

My 14 year old self penned that in my journal one night, heartbroken.
I was being fed, that, if I tried just a little bit harder, only then God would truly love me.

But I could tell you how you’re called to do daily morning devotions, and dress conservatively and modestly, and always pray before meals. I could tell you that courting is the only way to go, and anything else is leading you to a life of sin. I would then point you to read Joshua Harris. I knew that if you were a woman and had a career in the men’s world, that you were definitely not living for God.

I was scarred and broken from a false religion of a false god. In everything I did, I fell short, and couldn’t live up to the rules. I felt trapped under law. Joy was lacking. Grace was absent.

If this was the god they were serving, I wanted absolutely nothing to do with it. And this is why I left that faith in the dust. I couldn’t find love, nor forgiveness.

It wasn’t a smooth transition leaving that faith. I had so much hurt. And I haven’t fully healed. I had so many doubts about everything, and my doubts still pass in and out. I would find myself crying out at 3am to a God I wasn’t even sure I believed in anymore.

But I’m slowly discovering the real Jesus. He doesn’t love me any deeper if I check more things off the spiritual check-list than my neighbor. He is strong enough to handle even my biggest doubts, and He’ll be there saying, “I’ll be right here beside you”, even when I scream his name with anger and frustration. He loves me even when I screw things up. He wraps His comforting arms around me when I’m heartbroken. His love is beautifully intricate. His grace is unrelenting.

I’ve found myself giving up on it all –

the never-ending hustle of religious activity,

the “five things Christians should be doing”

and the “ten ways to not waste your summer”.

Because when I was forcing myself to pray, the only prayer on my lips was:

“Dear God, am I good enough for you yet?”

Perhaps giving up is the only way to find out.

-Micah J. Murray (him and his wife are two of my favorite bloggers) on his post, “Dear God, Am I Good Enough For You Yet?

Beauty In the Mystery

Doubt.

I feel like this word is too guarded, especially in the Christian circles.

The stigma of doubt is that it is a product of failed growth, and it should by no means be brought up if that person who is doubting wants to be treated the same.

But in fact, I believe doubt is healthy and important to growth. Doubt can be cleansing. Doubt is a sign of earnestly searching for answers.

It’s okay if it’s messy. Sometimes messy can be healthy.

And I know you want to show me the path that you’re on, and guide me in the “right” direction. I know that it is out of love that you give me your answers, because you hate to see me this way. But I need to figure out my own answers to these questions that fill my mind… on my own. like the great word-spinner J. R. R. Tolkien said, “Not all those who wander are lost”.

Sit in your doubt. Talk about it. Understand all of the ins and outs of it. Sift through it, contemplate it. Let it peel back all of the layers of answers you’ve been fed, and see what’s really there.

As I’ve stumbled through the ocean of doubt and questioning, my mind ponders the difficult questions that don’t seem to have answers. And I wouldn’t trade my doubt for anything, because with it, I have gained strength for other trials I will enter. I have gained a widening sense of curiosity for the daunting questions in life, both large and small. I have grown a love for bleeding out the thoughts that strangle my mind, in the form of words and syllables that create thoughts, that would otherwise suffocate me.

And finally, I have learned that there is beauty in the mystery of it all.

{This was prompted by Beth’s post, here}

How Honest Is Too Honest?

How honest are you allowed to be on the internet?

How transparent are you supposed to be?

I write to let out the raging thoughts in my mind, to stay sane and sort through life.

But I find myself not publishing most of the things I write, because I feel they are too “transparent”. Why is that? If I write on here, but don’t write what I want to write, what’s the purpose? Maybe I missed an opportunity to connect with someone who is struggling in the same ways that I am, since I wasn’t honest. Why do I have to write with the intent to portray the false idea that I am perfect and I don’t have issues like everyone else?

I believe, like I said a few months ago, vulnerability is valuable. I feel like so many people, including myself, are afraid of vulnerability. But I also believe that it is important for healing and growth to happen. Everyone has their own standards for what they want to share, and that’s okay. But this is mine, and I want to, and am going to be open.

I’ve been struggling with life, faith, and questions that don’t seem to have answers. Life is hard sometimes. Finding hope and light is hard sometimes. But we’re not alone in our questions, and people need other people.

“We all have an audience. We all have some kind of an influence. We all have a story and a voice. Our lives are our songs. Our hearts are our songs. It’s okay to ask real questions. It’s okay to say real things. Let’s make things that matter and move, and let’s chase after those things as well.” -Jamie Tworkowski, on TWLOHA’s blog, here.

Here’s to transparency.

Vulnerability Matters.

Recently, I read through some of my old journals and my old blog posts. I had several strong emotions from that. As I saw how helpless and lost I felt, it made me sad. But as I thought about how I’ve made such an upward turn, it made me see how awesome God’s grace is. When I was at my lowest point this semester, when I hit rock bottom, He was using all of that for His glory.

Two months ago, I wrote in my journal “I can’t get out of this cycle. I feel like I’m drowning, with weights tied to me hands and feet. I’m struggling for air, and instead I’m inhaling water. I cannot find an escape…”as I struggled through anxiety and depression, it was impossible for me to survive without God. And as I finally clung to him, and he carried me up and out of that darkness.

Throughout this semester, I have learned about others who have been struggling. In the very last freshman seminar class, we had a time to talk about how God has worked in our lives through the past few months. One of my friends told the class about how he was struggling with depression throughout the semester, but how God was incredibly faithful and pulled him out.

I think it’s good to be open. You never know when your openness can affect another’s life. Vulnerability matters.

I came across this quote recently that said “The scars you share become lighthouses for other people who are headed to the same rocks you hit”. I want to be open, so that I might give others hope through my trials, and the fact that I overcome them through Christ.

I only have my final exams Monday through Wednesday, and then I’m done with my first semester of college. I can’t believe how quickly it passed, but also how much has changed. In these past four months, I have changed in more ways than I have in most of my 18 years. I have cried and wondered where I was going. I have hit rock bottom and felt hopeless. And in that moment, God reached down and pulled me out of the dark. I have grown so much closer to Him, and have learned to put my trust in Him.

“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned and received and heard and seen in me- practice these things, and the God of peace will be with you.”

{Philippians 4:9}

I Felt So Free.

As I sit in the backseat of my friend’s convertible, four of my friends are all around me singing the music that’s blaring from the car’s stereo system at the top of their lungs.

We’re driving across the long bridge from Clearwater to Tampa, Florida. It’s night, and I can see the beautiful shining lights of the city, reflecting onto the stillness of the water in the bay.

I’m sitting in the middle of this, soaking in the beauty of that moment. I don’t want this ever to end. sometimes, I feel alone. I feel hopeless. I feel lost.

But in that moment with my friends, it was something that I have never felt before. I felt so free as I held my hands above the body of the car, screaming into the darkness of the night, with these close friends.

“Because I know there are people who say all these things don’t happen. And there are people who forget what it’s like to be 16 when they turn 17. I know these will all be stories someday. And our pictures will become old photographs… But right now these moments are not stories. This is happening… I can see it. This one moment when you know you’re not a sad story. You are alive, and you stand up and see the lights on the buildings and everything that makes you wonder. And you’re listening to that song on that drive with the people you love most in this world. And in this moment I swear, we are infinite.” -Stephen Chbosky