Friday, September 30, 2011

Healthy Transparency

I struggle with transparency when it comes to my health.  I'm sure that might be a surprise when you read my blog because I talk about it a lot and basically puke out a ton of details.  But in real life I'm more likely to not say anything when I'm struggling.  An incident this morning really made me think about that.  I had thoracentesis yesterday and when I was relating the incident someone said, "Dawn I had no idea you were so ill."  The statement made me cringe.  And later, as I thought some more about it I cringed again for a totally different reason.   I want to be clear, her motives were pure sweetness.  She was expressing love and concern for me so I don't have a problem with her AT ALL.  

Reason number one that I cringed.  I don't want to be defined as ill.  That definition makes me feel weak.  It makes me feel like I am an illness rather than a person with a chronic health condition.  See, I even did it there.  I have a "chronic health condition" not an illness.  Hmm.  So what's my issue?  I don't look at other people who are ill and think they're weak. (unless they're whiny)  I wasn't ever treated differently as a kid by my parents because of my health issues.  I wasn't coddled or told to buck up.  It was just something they walked through with me.  So why does this bug me so much?  Why do I hate it when people ask me how I'm feeling or basically give me any extra attention because of my health?  I really don't know.

Maybe the real answer comes in the second reason I cringed.  As I thought about the conversation later I felt...are you ready for this...PROUD.  Yep, I was proud that she didn't know because that meant that I handled my stuff with strength and grace and stoicism.  And that made me sick.  (not ill, but nauseated at how messed up my thoughts can be)  Why did I make this into a measuring rod that tells me how well I handle my challenges?  Why did I feel like I was winning some unspecified competition by my ability to hide my chronic illness.  

I never want to be the person that people want to escape from at parties.  The one who goes on and on about health issues and whines and complains and seeks attention and sympathy.  I really think that's an ok goal.  However, God has brought me through a lot of crap and continues to do so on a daily basis.  Every time I hide it, I hide the amazing testimony of His love, His strength, His healing, His grace in my life.  That makes me want to cry because I know I couldn't make it through one second of this on my own.  But every time I hide my struggles so that I appear strong, that's exactly what I'm trying to say.  I'm good on my own.  I've got this.  

Ask my husband, my kids, my best friends and they'll tell you that I so don't have this.  I'm so NOT good on my own.  What I want is to come to a place of healthy transparency.  The kind that doesn't make you avoid me at parties because I won't shut up about my latest procedure.  The kind that also doesn't make you want to tell everyone what a hero I am because I'm so strong as I deal with my challenges while I smile humbly in the background.  I want my life, my story to be that yeah, I deal with some crap and God gets me through it every time. I want to be honest but undramatic about what I'm facing.  I want to ask for prayer without feeling stupid because I'm asking for prayer AGAIN.  I want my story to be that I would be a mess of anxiety and pain if I didn't cling to the One who knows exactly what is going on and holds my future in His hands.  I want to live and laugh and love as I honestly deal with the challenges life brings my way.  

Do you ever feel this way?  Like you're hiding what God's doing in your life and you can't figure out why?  Pray with me as I work to be transparent in a healthy way so that God gets all of the glory he deserves.  

Friday, September 9, 2011

Giving it to God, part 4

This is part 4 of a 4 part series.  To read part 1, click here.  To read part 2, click here.  To read part 3, click here

Around the same time that I was learning to focus on my blessings instead of the negatives, I also found a new neurologist who specialized in headaches.  He was able to see that I was having 3 different kinds of headaches and found a medication that actually gave me headache free days instead of headache free hours.  It has fewer side effects too.  All in all I was feeling better, exercising regularly, things were looking up.  Best of all my anger at God was gone and I was again growing in relationship with him.  I had a few months of things going really well.  My echo-cardiogram was good so my cardiologist said we could skip my yearly MRI, we went on vacation and got to see family, and I went to my first National Marfan Foundation Conference.   After hearing again the risks and the necessity for monitoring at the conference, I called my cardiologist and requested that we do the MRI.  My headaches also started ramping up again and I noticed that my endurance as I exercised wasn't as good as it had been a few months before.  I thought that the many hours in the car had been too much and I just needed some recovery time.  

I was so anxious as my MRI came closer.  I normally have some anxiety, but they are routine so I don't know why it seemed worse this time.  As they did the test I knew they had found something because they took more time than usual and injected the contrast an extra time.  The results did show a pleural effusion and the radiologist wondered if one of the cysts from my Dural Ectasia had formed a fistula with the pleural space and that's what was contributing to the fluid around the lung.   At this point, it's all speculation based on impressions from the MRI.  I'm not happy that another health challenge has cropped up.  I have referrals to 3 specialists and I'm not looking forward to another season of doctor visits and tests.  I sent an email to family to ask for prayer and I've obviously been praying a lot about it myself.  At first I was filled with anxiety and my anxiety was causing me to not listen very well to God.  I couldn't hear his assurances that he was taking care of me.  Instead I was frustrated and trying desperately not to get angry again.  I was overwhelmed with the thought of a season of poor health; it was made worse by the memory of how far from God I felt when I was so angry.  

I received a text message from my brother after asking for prayer telling me that God had revealed to him that I haven't given my health issues to God, that I still try to control things.  And you know what?  It's true.  That was from God.  I see it in my anxiety. I see it in my need to do everything I can to take care of my body.  I see it in my diet.  I see it in my exercise plan.  None of those things are bad, but it's the heart behind it.  It's the desire to control and do everything right so that things will go well. With that comes frustration when things don't go well because I have done everything right!  God had said the same thing to me earlier in the week--that I needed to just relinquish all of it to him.  I obviously hadn't listened since he told my brother.  The thing is, I love how God works.  If anyone else had said it to me it probably would have made me mad.  But when my brother told me--because of who he is in Christ, because of his humility and his love for me--I wasn't angry I just instantly thought, "Ah, he's right."   I love that God knows our relationship so well that he knew who I would receive the message from.  

So now, here is my dilemma.  I want to surrender this completely to God.  But I don't know how.  I don't know how you balance surrender with appropriate concern and responsibility.  It wouldn't honor God if I just stopped getting medical care, stopped taking care of myself.  I need to use my discernment to know when an issue needs follow up and when I can let it go.  But I want to let it stop with that rather than going beyond that to taking control and responsibility on my own.  I am praying and I know that God will show me how to give this to him, even if I have to do it daily for a while.  

Thursday, September 8, 2011

Giving it to God, part 3

This is part 3 of a 4 part series.  To read part 1, click here .  To read part 2, click here.

As much as I wanted to give up the idol I had made of my health and focus on God alone, it felt unattainable.  As weeks turned into months--and eventually I hit the one year anniversary of my constant headache--my weariness, fear and pain turned into anger.  The invitation to come closer seemed to be something I couldn't accept.  I wanted to, but the realization that God could heal me, he could take it all away in an instant if he wanted to, was more than I could handle.  I knew he had heard me crying out and begging for him to take this away, I knew he had seen my tears and my struggles and my fear and he wasn't fixing it.  I knew there was nowhere I could go to get away from God, (see Psalm 139:1-18) but my anger made me want to walk away from him.  I was giving my life to follow him; we had left our home in Washington, my husband had left his corporate job for full time ministry, we were living 1200 miles away from our families and friends and the return on all of that obedience was worsening health and constant pain.  I know that God owes me nothing.  I know that God made the ultimate sacrifice when he sent his son and sacrificed him for our sins. I know that scripture promises that God will never leave us or forsake us. But the knowing didn't change my feelings.  What I felt was abandonment, disregard, and total lack of concern.   And the longer I was angry the more I was sure that God wouldn't want to heal me because I wasn't showing him the reverence that he deserved.  I felt bound, held captive by this anger that I couldn't seem to let go of and the helplessness of knowing that I was the only thing keeping myself from the God that I loved more than anything.  Even on my angriest days, I still loved the Lord.  I still didn't want to try to do life without him.  I wasn't at the point of denying his existence.  But I also didn't know how to reconcile the love that I felt for God with my anger because of my lack of healing and my constant pain.  

I would like to say that I had some fantastic encounter with God that turned me around.  That somehow God showed me this divine purpose for my suffering that made every moment of pain worthwhile.  But that wasn't what happened.  Instead it was a decision.  It was as simple and as difficult as me just deciding that I couldn't go on so angry.  It was the decision to believe that God loves me more than I can ever comprehend and that if he was allowing me to be sick, I had to trust that he would use it for his glory.  So I began doing the things that I knew, the things that were the foundation of my relationship with God.  I started reading my bible, praying, participating in worship.  Most of all I started asking God to give me a new attitude.  I started asking God to heal my anger, to heal my wrong beliefs rather than my physical body.  I came to realize that God cares way more about the state of my heart (not my physical heart) than he does the state of my body.  God had been working on my healing for years and continued to invite me to look at life differently.  He asked me to develop an attitude that seeks to find the blessings instead of the problems.  As someone who leans toward being a pessimist this wasn't an easy thing.  One thing that really helped was a book that my husband gave me by Ann Voskamp called One Thousand Gifts: A Dare to Live Fully Right Where You Are.  One of the phrases she used in the book was "the beautiful ugly" which refers to finding the beauty God has blessed us with in the midst of difficulty.  As I started to list my blessings, to focus on gratitude, God began to change my heart.  He began to transform me into someone who can say that my circumstances may suck, but there are so many other things that are fantastic so I'm not going to be defined by the suckiness.  It's not a denial thing, it's not a refusal to see reality, it's choosing to believe that God really does have my best interests at heart and there is beauty in this life if I open my eyes to see it.  

Wednesday, September 7, 2011

Giving it to God, part 2

This is part 2 in a 4 part series.  To read Part 1, click here.

Owning my health didn't just lead me to make responsible choices, it led to major struggles with control and frustration because I never could own enough of it to fix it.  Something had to change.  

You can imagine my frustration about 4 or 5 years ago when suddenly a whole new world of challenges began. I started having severe, excruciating headaches.   As a child in 2nd grade I had been sick for 2 months with headaches that were so bad that I couldn't get out of bed.  I was ok if I was lying down, as soon as I stood up the headache came back.  They never were able to determine a cause and eventually it resolved.  Except for migraines it was a onetime occurrence.  After a solid week of constant headache, I went to the doctor.  After a few weeks with no relief they referred me to an ENT (Ear, Nose and Throat specialist) who couldn't find anything wrong.  After more time with no relief, I was referred to a neurologist.  An MRI showed Chiari Malformation so they sent me to a neurosurgeon who did more MRI's and found that my dural ectasia was severe so they couldn't treat the chiari malformation surgically.  I left with an answer of "we really have no idea what to do for you.  Just go live your life."  The neurologist tried medications which offered some relief and lots of side effects, but at least I could function.  I switched to UCSD and still the neurology department didn't really know what to do with me.  I researched on my own, I changed my diet, I adjusted my activity level, and some of it provided some relief, but nothing healed me.  

In the midst of all of this I cried out to God over and over.   I asked everyone close to me to pray.  I asked God to show me if there was some sin in my life that was causing this.  I wanted to make myself right, I wanted to fix this.  If I was blocking God's healing in my life I wanted to know and take care of it.  I confessed my lack of faith; I confessed that I knew God could heal me I just wasn't sure that he wanted to. Time went on and pain became my constant companion.   I argued with God, I was working at a church and homeschooling my kids--both things I felt God had called me to do--so how could I really be effective for him if I hurt all the time.  How could my life be a testimony if I was frustrated and exhausted and needed to lie down?  I could do so much more if he would just make me well!  I had a plan!  Why wasn't he getting on with it?

One day, as I was driving to work I was listening to tobyMac's song Made to Love You and singing along at the top of my lungs because it was one of my favorite songs.  I got to the part where it says "anything, I would give up for you, everything, I give it all away" and as I sang it, I heard a voice say very clearly "even your health?"  I was alone in my car and it wasn't an audible voice but it was loud and clear and it was a voice I knew to be God's.  Shaken, I pulled my car over to the side of the road and just sat there.   God asked me again, "Even your health?  Would you give up your health for me?"  I was stunned.  I knew God wasn't literally saying he was going to make me sick.  I want to be clear on that, I don't believe that God caused my health issues.  But I knew that God was asking me to give up the idol that I had made of my health.  My health was on this high pedestal, it was the unattainable that I was willing to change everything to achieve.  I could readily give up money, fashion, a house, but God knew that my idol was being healthy and he knew that spiritually, that wasn't good for me.  I was able to justify this idol by saying that I was being a good steward.  God said that my body was a temple of the Holy Spirit, so it was honoring God to want to make my temple the best it could be.  He was inviting me to come back to Him and Him alone, forsaking all my idols.  Could I do that for him?  Could I accept whatever came my way with my health and still honor and glorify God with my life?  Could I be sick well?  Could I live without grumbling and complaining?  Could I be joy-filled and pain-filled at the same time?  It was an invitation I wanted to accept.  It was the invitation to come closer to my savior and allow him to be enough, even as my body broke down.  But I knew it wouldn't be easy.  

Tuesday, September 6, 2011

Giving it to God, part 1

This week, I'm exploring how God has been teaching me to give up control of my health. Today's post is part 1 of 4 posts in this series. 

I can remember a conversation with my Mom when I was really young.  I knew that I had already had surgery for 3 hernias before I was 2.  And then I heard someone talk about hernias being caused by straining or lifting too much.  So I asked, "Mom, did I lift heavy things when I was a baby?"  She told me no and I asked if she was sure that I wasn't trying to carry chairs or something.  

When I was 4, I was diagnosed with scoliosis.  Again, I remember the early questions but I don't know if they were directed toward me or just overheard as someone asked my Mom.  "Is it from poor posture?"  Then later as a teen when I had to wear a Milwaukee brace and hated it desperately, one of my Mom's friends suggested that I should visualize my spine straight and refuse to see it, even in my mind, as curved and then it would straighten and I wouldn't have scoliosis anymore.  

As an adult, an acquaintance told me that she had been researching Marfan Syndrome and believed it was caused by low copper and if I would just buy the supplement she sold that I could probably eradicate my syndrome.  

In my Christian circles, lots of people brought faith in.  "You just need to have more faith."  "It's not going to happen if you don't believe that God can heal DO believe God can heal you, right?"  "You're putting too much faith in medicine, that's why you're not being healed; you trust what your doctors say rather than just believing God."  And I think the most damaging were those who believe that all illness is tied to some sin.  A friend, and don't misunderstand me--this is a wonderful Christian woman who acted out of love and concern for me--gave me a book that she thought would help me.  It was a book that linked specific illnesses to specific un-confessed sins.  

So over and over, starting from a very early age, I swallowed this message that somehow my health challenges were my fault.  Somehow there was something that I was doing, or not doing, that was bringing these constant challenges into my life.  The nurse side of me didn't buy it.  Logically it didn't make sense based on what I knew about my syndrome.  And the friend of Christ side of me didn't really buy it either, it just didn't line up with John 9 where Jesus says that the man wasn't blind because of sin but so the works of God could be displayed in him.  But even as I didn't buy it there was this small voice in my head that whispered that it was my fault.  That if I could just figure out how to do the right things; the right diet, the right activity, the right faith, the right prayers, the right attitude...that somehow I could fix this and not struggle so much with my health.  I willingly embraced the responsibility for my health.  I owned it.