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Monday, November 21, 2011

Lyme Light or How I Came to Enjoy Veggie Cheese

If you're like me, you try to imagine everything ahead of time.  I used to  imagine what it would be like to be  in high school and have a locker and lots of cool friends.  But when high school didn't meet my glamorous standards, I naturally leveled up to imagining college with all of its perfections.  As much as I try to imagine positives, there are some things that I refused to consider.  Among the scads of examples, one is pertinent to this story and that is my history of food.  I remember walking through the grocery store as a little kid and seeing things like "tofu" and "veggie burger" and "sugar-free."  My narrow mind would wonder, "Who in the world would eat that stuff!?  I mean...there are REAL burgers in the next aisle!"  I was convinced that nobody in their right mind would actually purchase something that was a mere substitute of the real thing.  I also associated tofu with vegetarians and of course, ALL vegetarians are weird, save-the-planet types that march with signs in front of SPCA buildings nationwide.  

Well, I played the fool this time.  This very day I have consumed a grilled cheese sandwich.  The bread was made of brown rice flour and the cheese was made of vegetables (don't ask me how they managed to manipulate vegetables into posing like cheese).  It has been over a month since I've had real cheese...or bread...What could have produced such a drastic change in my eating habits?

It all started about four years ago during my freshman year of college with a little twinge in the nerve behind my right ear.  (Actually, it probably started before that, but it was too subtle for me to notice.)  This twinge developed into a smashing headache and twitching in my right arm.  Weird.  My roommates thought so too.  After a few episodes like that, they sent me to the school nurse at and I was sent to the ER where scans were taken of my head.  These came back normal.  I then was shepherded to the pharmacy where I picked up a strong migraine prescription.  The doctors  informed me that I needed  to drink more water and refrain from being stressed.  (If you knew me freshman year, you'll find this laughable.)  
Months dragged on and other strange symptoms appeared.  My heart had strange palpitations.  My joints ached and my spine was always stiff.  The headaches would flare up and then calm down again for a few months.  I started to live in daily pain.  Doctors didn't know what to do with me.  Numerous tests revealed nothing, and I began to think that it was all in my head.  So I soldiered on.  It wasn't too hard to forget the pain on most days. I'm of Irish/German/English descent.  I come from a long heritage of hardy stock: strong, independent women who have always swallowed pain and pressed on into the thick of the battle.  So I did.  When the headaches got bad, I slept them off and then got right back to homework.  Once, I even wrote a paper in the middle of a headache.  Sure, it was tough, but I was strong and proud of it too.  

Not long after I began taking the migraine medication, I began to feel worse.  Typically speaking, medicine is supposed to help...not make you feel like you got run over by a semi.  So I stopped taking it.  From this point on, I was a no-meds girl.  For the next three years, I saw the doctor for various odd symptoms including skin rashes and weight gain/loss.  My weight fluctuated 20lbs. every six months.  The weird thing was that I gained weight when I worked out, and I lost weight when I did nothing.  It was inexplicable.  Months dragged into years and the headaches lessened thanks to regular chiropractic appointments, but a weakness in my arms and legs increased along with a numb and tingling sensation in my face.  I began to believe that I had serious neurological problems, but since nothing ever showed up in brain scans, the doctors wouldn't listen me.  

Then in the spring of 2011, things began to escalate.  The pain in my joints became more debilitating.  I started writing with my left hand because my right was so weak.  I worked at a daycare all summer for 35 hours a week.  When I came home, I was so exhausted I could barely move.  By the end of the summer, I was back in the doctor's office where they looked for (but did not find) rheumatoid arthritis.  I began to get frustrated.  Daily pain was one thing.  To have no name for it was another.  If I could just say to myself, "Look, you have arthritis.  This is your life.  This is the pain you will have until you die.  Deal with it."  I could resign myself to what God had done and deal with the pain.  But God had not allowed me that luxury.  And now, I'm so glad that He didn't.  If He had given me answers then, I never would have come to the answers I have now and I wouldn't have needed His strength to humble me.  

I returned to school in August in a lot of pain, but excited about my senior year.  I could do this.  Sure, I had to know my limitations (a gross and repulsive word) and I had to be tough, but what was four months of school?  I'd done this before.  No big deal. 

As it turns out, from day one I was a physical wreck.  Every day was a battle.  Getting out of bed, walking to meetings and classes, sometimes even brushing my teeth was hard.  I had a constant headache and frequent heart palpitations.  The one word that characterized my life was EXHAUSTED!  Simple daily tasks were becoming more difficult as the "migraine" episodes increased and tremors wracked my body.  Soon, I was living in episodic level at least 50% of the time.  Worse, my mental ability was slowly breaking down.  I couldn't concentrate on anything and I was forgetting things a lot.  I remember once when a visiting pastor began to joke about his age.  "You wouldn't understand this because you're so young.  Enjoy your youth when you aren't living in pain and forgetfulness from old age!"  It struck me that I was 21 years old and I understood from experience what it meant to be 80.  Isn't there something wrong with that!?  My roommate Lydia was a constant blessing to me in this time.  She attended to my needs when I could barely get out of bed.  She helped me remember things that I had forgotten.  She even opened my toothpaste for me when my fingers were too clumsy to do it on my own.
One day in October my close friend and former roommate, Liana, called.  I missed the call but got the voicemail.  "I need to talk to you.  You have Lyme disease.  You're going to be okay, but we need to talk."  Liana had been bitten by a tick in July and we'd talked several times about the struggles she'd been experiencing with Lyme.  I felt awful for her and prayed for her.  But when I got this phone call, I couldn't believe it.  My thoughts?  "Okay, Li...I know you want everybody to have what you have and I wish I could go through this with you, sort of. But I don't have Lyme.  I haven't been bitten by a tick in years."
Still, I was curious so I started researching online.  I read a list of symptoms a mile long and realized that I was staring at a replica of my life from the last three years.  I couldn't believe it.  Why had this never even come up on the radar at the doctor's office?  

I talked to Liana and we made plans for me to fly out to New Hampshire in May to see a specialist who had helped people like me.  However, as my symptoms continued to worsen, my parents and I decided that it was worth taking the time off school to fly out there and get some help so I could actually finish my senior year.  It was an emotional trip.  The specialist confirmed that I had a late stage of Lyme disease along with its normal set of accompanying viruses including Mono and some brain parasites.  The Lord knew that I would need to be with Liana's family when I learned this news.  They were supportive and encouraging and helped me work through a plan for the rest of the semester.  When I returned to school, I called my parents again and we decided that I actually needed to come home and try to heal.  I wasn't functioning well at school and the process of getting better requires a special diet that couldn't be sustained on campus without significant disadvantages to a large circle of people.  So, I came home.  It was hard and it was humbling.  I was weak and for the first time in my life, I was submitting to the effects of a physical illness.

How did I get Lyme?  There's no way to know for sure, but most likely my mom is a carrier and so I've had the disease in my body since birth but it didn't activate until later.  Because Lyme attacks many different organs and hides deep in the body, it can be hard to diagnose because it rarely shows up in blood tests and the symptoms are so scattered and random.  A lot of people become debilitated from it and never find out what happened.  I'm so thankful that the Lord allowed me to find out what was actually going on.
It's going to take a year for me to get rid of this thing.  

So now I'm home and I eat veggie cheese and brown rice pasta and tofu and miso soup.  I gnaw on almonds and carrot sticks for snacks and sometimes I have dark chocolate because it is very low in sugar.  Essentially I have to avoid gluten, dairy, and sugar.  Yeast and nightshades are to be shunned as well since they also feed the bacteria that's destroying my nervous system.  I'm also going on a detox that will drag the Lyme out of me and restore me to health.  It's a new way of life for me.    I'm not very creative when it comes to food so my mom has to help me a lot.  My independence has been stripped away and it's not very comfortable.  Part of the struggle is the shock just from knowing that I have a disease that's been eating away at my brain for four plus years.  Three  of the things I valued most (strength, intelligence, friendships) have been removed.  I am weak and it takes hours to do my homework because I can't think clearly much of the time.  My friends are all back at Northland, so I spend most of my time by myself (which I never do!) 

And God has been teaching me so much through this!  I'm not enjoying it.  It's not what I would choose.  But He is faithful!  I think I've earned the right to say that without any cliche attached to it!  He IS faithful!  I think that I understand finally Paul’s words of 2 Corinthians 3:8-10: “We are afflicted in every way but not crushed; perplexed, but not driven to despair, persecuted but not forsaken, struck down but not destroyed, always carrying in the body the death of Jesus so that the life of Jesus may also be manifested in our mortal flesh.”  I get that now.  Not to the degree Paul got it.  His afflictions were deeper and more than mine.  But now I know what it is to be afflicted but not crushed.  Two years ago, this would have crushed me.  Sometimes I still imagine that it might.  But the gospel is stronger in me now.  My Savior is nearer.  I understand better what it means to die to self.  I don't understand well.  But better than I used to.  

Dying to self means waking every morning and first thanking God for the gifts of the gospel in spite of how much pain I am in.  Dying to self means then taking stock of the pain and thanking Him for the grace to bear it as His will for me today.  Dying to self means refusing to give in to the temptation to turn every conversation into a sob session about my physical problems.  Dying to self means admitting failure and getting back up to walk in grace.  It is seeking empowerment rather than pity.  It is rejoicing in the opportunity to view life from a new perspective.  It is knowing my God-given limits and rejoicing in those boundaries.  It is singing instead of complaining, praising instead of whining.  In short, dying to self is living like there is a God who loves me with an everlasting love and has actually shown His love in the bloody sacrifice of Calvary.  Self death is the logical response to His death for me.  Self death is a sweet trust that recognizes the One who formed each day for me, submits to what He formed it to be, and accepts as good every part of it.  Self death needs nothing.  It thrives in the presence of Jesus and only glances at pain as a way of glorifying Him.  

God, form this death in me.  Let my suffering bring you glory!  Small though it is, it is as yet the biggest trial you have brought me to.  So in years it will seem smaller, but right now it seems insurmountable. You have wounded me because you love me and I am NOT without your grace. 

1 Peter says that we will go through some necessary trials in order to prove our faith.  Note that word: necessary.  In other words, there is no other way that faith can be formed in me.  God doesn't bring pain flippantly.  He doesn't look down and say, "Oh...yeah.  I forgot that you were dealing with Lyme...Sorry."  I'm just a little sheep and there are going to be times that I look up into the eyes of my Shepherd and with tears and anguish say, "Abba, I thought you loved me!"  
And with His nail-scarred hand on my little head He replies, "I do love you!  Remember the cross?  You're just a sheep and there's so much you can't see and understand.  You're just going to have to trust me."  I know some of it.  Like the fact that I've been humbled by weakness and I'm learning that I NEED Him for more than just big decisions and huge financial needs.  I need Him always.  I need Him desperately.  It takes a lot to get my type down.  And it has to be drastic or I won't pay attention.  So He has been drastic and I'm trying to listen.   

So that's how I've come to enjoy veggie cheese.  I didn't realize how much I depended on junk food for happiness until it was taken away from me.  I might not be creative with food, but I'm definitely creative about the idols I make up.  And I'm learning to say, "If it takes Lyme to pull me close to you, Father, then so be it....just don't let me go!  I can't do this alone!"  And you know, scripturally speaking, that's the kind of attitude He wants from me....the kind of attitude He blesses.  And that's when He can work the gospel deep into my heart.  

PSALM 119:50 This is my comfort in my affliction, that your promise gives me life.

1 comment:

  1. my pastor preached this amazing sermon last night from Exodus 15:22-27, and what he was saying finally clicked with me: in a trial, it's not God who is on trial--it's me! HE never fails; He could never fail. There's no reason for me to ask Him why. (maybe He wants to ask me why sometimes!) My faith is being tested, and it will be demonstrated through my works.
    I think you're learning this, too, through life.