Monday, December 30, 2013

2013: Worth It

This year, 2013, has been a year filled with heartache, pain, joy, hope, and change. I don't even know where to begin.  A few days ago I would have told you 2013 sucked and that 2014 has got to be better than this.  But, now, looking back, I wouldn't have skipped over this year for anything.  God has brought me to a place with Him that is beautiful and real and deep. And through all of the heartache and pain God has brought joy and hope.  

2013 in a paragraph: 
This year I celebrated my first year of marriage with my amazing husband, Tanner.  I turned 23.  I passed Geology- which was a HUGE miracle because my teacher was crazy.  Went white water rafting for the first time. Watched my parents renew their vows at their 25th wedding anniversary. I threw Tanner a surprise party for his 21st. Tanner and I went camping, just the two of us for the first time.  My heart broke while Black Forest was on fire and Manitou Springs was flooded.  I had to make one of the toughest decisions of my life.  I had to say goodbye to my beloved childhood dog, Stonewall. A gentleman to the end. Had my first New Year's Eve kiss.  Watched Mariano Rivera pitch during his last season. Watched my parents get a small dog (That gets the "craziest thing that happened" in 2013 award). Lead VBS worship with my husband.  Oh, and I started a blog ;) 

This summer I got my Associate Degree.  I was excited yet super embarrassed by this.  I mean most people my age were getting their Bachelor degrees, being it's four years out of High School. Plus, I went to a High School that had duo-credit.  I was taking college classes my Junior year. School has always been super hard on me with being sick, thinking I was stupid, not being able to comprehend things, or remember things.  It was a huge decision for me to go to college in the first place because I thought I was too dumb to handle it.  I actually ended up taking 3 semesters off of college because of my health... what we now know was Lyme Disease.  I compared myself to everyone else and couldn't see the beauty of what God was doing. Now, I can call it a miracle that I even graduated from High School or got my Associate Degree.  I mean, throughout all of my schooling I had bacteria eating at my brain and a disease trying to kill me.  It's by God's grace that I made it as far as I did.  

But the most amazing thing and why 2013 will go down as one of the best year's of my life is because God answered a cry of my heart.  A cry that I have had almost all of my life.  Being diagnosed with Chronic Lyme Disease is an answer to prayer.  I am still amazed that we finally got here.  To an answer and hope.  After years and years of pain, questions, discouragement, confusion, doctors looking at my like I'm crazy... we are here.  Through MRI, colonoscopy, endoscopy, ultrasounds, CT scan, injections, blood tests, nights in the ER, days in Urgent Care, specialists, weird diagnoses, medication after medication... we are here.  

The journey has only begun toward complete healing and remission, but I am finally on that road.  The past three months have been hell, but God's grace is enough.  I've learned this past year that I love Jesus because of His character, that never changes.  I think I used to love Jesus because of what He did, but then He didn't do what I wanted Him to do and my theology and foundation shook.  But when I stand in who He is my foundation doesn't shake and His grace is enough. 

2013 summarized a lot of fears, doubts, concerns, hopelessness, and confusion I've had for a while.  But God makes beautiful things out of dust.  And through all that 2013 symbolizes and summarizes I wouldn't trade this year for anything.  And I think the best part is that God doesn't waste hurt.  Seeing and being told what my story stirred in others makes it worth it.  

 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28

"You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives." Gen 50:20 

"...I'm a prisoner of hope..." Zechariah 9:12 

Energy Expelled: 3 hours to type. Just finished and am now getting a migraine. Drank a full 32 oz nalgene.  And my joints are so stiff my knees won't straighten.  

- "We underestimate God's desire to overcome every obstacle in our path"  

Tuesday, December 17, 2013


I was going to write my next blog about LLMD's, how I got to mine, and treatment.  But I feel like God has something else He wants me to talk about.  So I'll write about that another time. 

Even though I've been sick all my life, I've always been a dreamer.  When I was in 5th grade,  I remember the time a few of my classmates were talking about what they wanted to be wen they grew up.  They turned to me and asked what I wanted to be... I thought for a moment and said I want to be a dancer or the first female president.  I remember all of the boys saying I couldn't do that since only boys are presidents.  They all told me we would have a female president way before I'm old enough to run. But I wasn't discouraged, just made me dream bigger! 

In High School I went to Uganda twice, Winnipeg, Canada, and Waveland, Mississippi.  A year after I graduated from High School I decided I would  go to Zhytomor, Ukraine for a few months.  I had never been there before nor had I  met the person I would be living with until I arrived.  I LOVED it! From all of the experiences and adventures I had on these trips, it confirmed God's calling on my life to be a missionary in either Africa or New York City (Thank you, David Wilkerson).  

I led three Pro-life rallies, and spoke at three March 4 Life's. I was the student who wrote and spoke on the topics of abortion, human trafficking, orphans in Ukraine, homeless people and such.  When I began taking college classes I decided I wanted to make a lasting difference in the realm of politics. Before my health started declining and hindering my passions, my biggest issue was trying to decide if I wanted to live with homeless people in NYC, or move to Washington, D.C. and fight for the preborn.  

Up until a year ago, the majority of my Facebook posts were about adventure, breaking out of the mundane mold, doing crazy things, going to the Red Light District in Amsterdam, rescuing preborn babies, hanging out with broken and unloved people downtown and listening to their stories.  I thrived for something more and never wanted my life to be boring or "ordinary" . 

But this vicious disease and lengthy treatment took all of that from me.  Of course my passions haven't changed.  But I don't lay in bed dreaming of being a foster mom to troubled youth, adopting babies that were about to be aborted, starting my own ministry, or rescuing those trapped in slavery. My Facebook posts started being about how God is our hope, He heals, and about Lyme Disease. Now, I lay in bed and beg God to take this pain away so I can have at least a couple hours of sleep.

To be completely honest, I miss who I used to be.  At times I feel like there is just no point to my life right now and I have nothing to show for.  Going from wanting to see the world to wondering if I can make it down the stairs without crying or falling  is really hard on my heart. I don't like seeing or being around people and I have to make a choice to be happy for people that have exciting news, because I'm jealous. 


The past few weeks I have been telling... yelling... crying out to God about how fed up, lonely, in pain and tired I am.  He didn't answer how I wanted Him to, but He did answer.  

On Sunday I got a message from someone thanking me for writing my blog and encouraging me to keep writing.  I then found out that Sarah Young (the author of Jesus Calling) wrote her books when she was suffering with Chronic Lyme Disease.  Yesterday I got a message from someone who has been sick for a while asking more about Lyme Disease.  

And today when I was pouring my heart out to God, He encouraged me to read today's Jesus Calling, so I did. The first sentence?  "Come to Me with your gaping emptiness, knowing that in Me you are complete." I LOVE this 💚 Not only do I love the reminder that God does not fail nor forsake us, but I love that I am complete in Him. If I'm holding Ugandan babies in Africa or laying in bed sick trying to sing worship music to my King, I am complete.  Even if physically I have nothing to show for, I am complete in Christ. 

Now that's beautiful. 

Energy Expelled:  An Epsom salt bath to rid my brain of toxins to think clearly.  A nap before and halfway through. Having to wipe down the keyboard due to sweating (thanks random fever). Covering my hands with an ice pack so my fingers would loosen up. And taking relax-a-tone to calm my brain and heart down.  

~ If our hope is in God we can never be hopeless 

Thursday, December 12, 2013

How I Got Here

About two and a half months ago I was diagnosed with Chronic Lyme Disease.  I either contracted this disease when I was 6 months old or it was passed down from my mom while she was pregnant.  I have had crazy symptoms, been to the doctors A LOT and have been diagnosed incorrectly for about 22 and a half years.  Because of what I have been through and am going through, I want people to know my story.  I'm the furthest thing from a good writer (so bear with me), but I feel like my story is important because it is so many other people's story.  I want people to know the truth about Lyme Disease, know the severity of it, and know what we, Lymies, go through on a daily basis.  

I had no idea that this world of Lyme  existed until I was diagnosed and started doing accurate research (there is so much crap out there).  Like most people, I was blind to the truth. I thought you had to have a bull's-eye rash. I thought you had to get bit by a tick. I thought that 2 weeks of Doxycycline would cure it. I thought that it only occurred in places like Massachusetts and the south. Boy, was I wrong.  

I guess I'll start from the beginning. This my story EXTREMELY condensed.  Later I will go deeper and explain things better.  But just the overview is a lot... 

On my first birthday I developed a rash all over my body.  My parents took me to the hospital and after 5 different doctors looked at me, they decided it was an allergic reaction to the antibiotic I was on.  I had been taking Penicillin for an ear infection and some other pains.  To stop the rash they gave me steroids (that's the last thing that should be put in a Lymie's body). Now, looking back at pictures of the rash, my mom and I realized that it was the typical bull's-eye rash related to Lyme disease.

When I was two, I was diagnosed with mono.  My blood work came back negative, but the doctor said I was too young to have positive blood work and all the symptoms matched. 

All throughout Elementary School I had yeast infections and the doctors said it was because of the bubbles in the bath and the chlorine in the pool water.  The summer before 5th grade, I had horrible pain in my left ear.  For a full year, I saw doctor after doctor for an answer to my ear pain.  Finally, I saw a specialist who said I talked too much.  Her conclusion?  For me to lay on my bed for 30 min each day without talking. The pain still didn't go away.  I also started having insomnia in Elementary School and was told I was too active and didn't know how to turn off my brain. I started seeing floaters and was told it was gel like substance behind both my eyes and, basically, I better get used to it.  In Elementary School, the headaches started, and they haven't stopped since. Looking back now, I can't remember a day I didn't have a headache since the 3rd grade.  

Middle School started and the ear pain, insomnia, and yeast infections continued.  I also started experiencing  joint pain, especially in my knees and shoulders. The doctor said it was because I had loose joints and it would go away when I was 18.  WHELP- it didn't.  Near the end of Middle School I started my menstrual cycle and thought I was dying.  It was irregular, miserable, and when it came, I locked myself up and cried.  To top it all off, I got hyperhidrosis (basically when you sweat for no reason.  I had to say goodbye to bright colored shirts).  

When High School started, my symptoms included: headaches everyday, constant joint pain, miserable periods, yeast infections, insomnia, and ear/jaw pain, muscle pain, tightness/heaviness in my chest, heart pain, random rashes (would last a couple hours to a few months), feeling like I had the flu, and fatigue.  I was diagnosed with mono three more times in High School.  The blood work always came back negative.

The summer before my junior year, I went on a mission trip to Uganda.  I took Doxycycline when I was there so that I wouldn't get malaria. After 28 days, as we were flying home, I started to get really sick.  I had HORRIBLE flu like symptoms, unimaginable fever, and a migraine. When we finally got home I thought I was going to die. I went from turning ice blue with 10 blankets on me to naked and sweating.  We thought it was malaria. After a few hours in the ER I was completely fine.  It wasn't malaria- the doxy was doing it's job by killing the Lyme Disease and I was herxing (see side "And That Means"). 

Two years later I went back to Uganda and was put on Doxycycline again and got extremely sick.  I spent the second half of the the trip (about 2 weeks) in bed thinking I had heat strokes.  Nope, just herxing again. 

Between the ages of 18-22 I just got worse and worse.  There were countless visits to the E.R and Urgent Care, I missed so much school, had to drop out of college, couldn't work full-time, and ended up not being able to work at all. 
After High School,  I started seeing a nutritionist that treated me for parasites, yeast infections, bacterial and viral infections, and maintain health in specific organs. But I was never fully healthy.

By that time, my constant symptoms were: headaches, migraines, joint pain, muscle pain, back pain, neck pain, ear/jaw pain, trembling, floaters, chest pain/tightness, heart pain, inflamed spleen, fatigue, insomnia, weakness, feet and hands burning and tingling, horrible periods, rashes, anxiety attacks,  and over-the-top mood swings.  

I stopped seeing my nutritionist when I was 21 and started looking for an answer with western doctors again.  Between December 2012 and March 2013 I was passed around to 10 different doctors, and saw each of them a few times.  I had a colonoscopy, an endoscopy, a CT scan, a MRI, an ultra sound, injections to numb nerves, and was put on a lot of pain medicine.  I was finally sent to a neurologist who said all he could do for me was diagnose me with fibromyalgia (leading to MS within 7 years), chronic fatigue syndrome, and rheumatoid arthritis. He could give me pain medicine that could make me fat and grumpy and also an anti-depressant to counteract the fat and grumpy.  But he said I was too young and joyful and to keep looking.

This next part is super long so I'll condense it for now.... Basically, I took this information back to my Nutritionist and between her and a lot of other people God placed in my path, I decided to start looking for an LLMD (See side "And That Means").  Every symptom matched and all of my mis-diagnosis (mono, malaria, Fibro, CFS, rheumatoid arthritis, possible lupus and MS) and are easily mistaken for Chronic Lyme Disease.  I had to diagnose myself.  

After a couple months of looking for a LLMD and waiting a few more months on a waiting list I finally got in to see my current doctor and am being treated CORRECTLY!   I'm almost 3 months into treatment.  It's been the most miserable 3 months of my life- but I keep my eyes on the prize.

Energy Expelled to write this post: 3 weeks for motivation. 3 hours to type. Sleeping till 1pm the next day. And fingers tightening up. 

- Hope does not disappoint