So I’ve been sick.


First and most importantly Jonathan and I give thanks to God our Father who is clearly guiding this unexpected path in our life.

We (and our families) are so grateful for your prayers, thoughts and encouragement over the past few weeks. I am especially grateful for those of you who have prayed for us, and those who have prayed for healing simply because you heard something was “wrong” or that I was “sick.” Many (if not all) of you have prayed blindly, without any specific knowledge of our situation, and we are grateful for your kind hearts.

We are traveling through an odd, unexpected tunnel that will forever shape the path of our lives and we still have not a clue where this tunnel ends. Many of you have traveled through similar tunnels, and while we wish this wasn’t the case, we are grateful for God’s comfort through shared experiences. (2 Corinthians 1:3,4)

Our only constant is the knowledge that this journey is through God’s tunnel. Somedays we are walking through it, others we are falling, but most days we are rushing through like the waters of a strong current. I’m reminded often of our trip to Africa when we rafted the Nile River. There was a moment at the beginning of the day where our guide told us to jump out of the boat and body raft the upcoming rapids. Grayson (my brother), Jonathan (my husband), and I immediately jumped ship. The currents of the river-that-once-was-blood pulled our bodies under, twisted us, turned us, and then released us to drift effortlessly through open waters and comforting sunlight. My present health journey feels similar to our rafting experience, except I have yet to reach the open waters and comforting sunlight.

We haven’t updated much because, well, we haven’t received many answers. Until recently, the general consensus (and by consensus, I mean 5 different doctors – 2 internists, 2 neurologists and 1 neurosurgeon) has been I contracted a virus that would have given anyone else the common cold or flu, but instead gave me an infection in my brain and nervous system. A virus very similar to meningitis — but no one wanted to make the definitive diagnosis because none of the tests revealed a clear cut case of meningitis. This virus triggered (understandably) the worst migraine headache I’ve ever experienced. It was this headache pain that sent me to the ER in late September.

 

I spent 6 days in the hospital in immense discomfort being tested for many different illnesses. During the testing my doctors found a cyst in my brain. It is rather large, but thankfully it’s in a good space. (Yes, there is such a thing as a “good space” to have a cyst in your brain.:-) It will need monitoring in the future, but as of now, the general consensus is the cyst has nothing to do with my current illness. You can add one more doctor to the original mix of five for that consensus. Six different doctors consider my current illness separate from my newfound cyst as this point in time.

 

It has been four weeks since I went to the ER and my illness is sticking around. I’m seeing a couple doctors but I still don’t have a definitive diagnosis. I’ve had nearly every pain related symptom imaginable. The illness has progressed from primarily affecting my nervous system to hitting all of my joints and muscles as well. I have a host of other symptoms — at this point all mainly pain related and affecting nearly every system and sensory input in my body. I have definitely been diagnosed with migraines, and the doctors still think I truly had (and may still have) a brain and nervous system virus. One theory is that I may have chronic meningitis. Most recently I saw a rheumatologist because one of the many theories is that I may have an autoimmune disease. Yet another theory argues for both an autoimmune disease and chronic meningitis. Some of the blood tests for autoimmune diseases have been positive, but more tests need to be run. Apparently, some of those tests can show positive even if I do not have an autoimmune disease, hence the further testing. Double Hence our hesitation in posting any sort of update. (Is that a thing? Double hence? I just made it a thing.) We simply don’t have any answers.

 

There is always the possibility I will walk away from this whole event completely healthy with no definitive diagnosis, so — go with me here — Triple Hence our hesitation for posting anything. :-)

 

The one thing I have been told is that my body has reached its pain threshold which has pushed me into a type of “pain cycle.” I’ve reached the point where I’m in so much pain that my body is reacting by spreading the pain throughout every possible place that can sense pain. I had never heard of such a phenomenon, but when the doctor mentioned it, I completely agreed and almost broke down in tears because someone was finally validating the amount of pain I was in. Now, since I’m stuck in a cycle where my body continually produces an incredible amount of pain everywhere, we first and foremost have to break the pain cycle. As we try to break the cycle we will continue our attempts to determine the cause of this elusive illness. I would not be surprised if we, as humans, never determine what has caused this crazy illness. God knows what’s going on in my body. God also knows this body was made to be only a temporary host. God will use this for His glory, even if we never fully understand it all.

 

So now you know. We’ve ruled out quite a lot in the past 4 weeks. I am thankful for what has been ruled out. I am thankful for your continued prayers, support and encouragement. I am thankful for God working His glory through this tough situation, and for granting me a positive attitude through it all. I affectionately call my current predicament “the BRAINVIRUS.” It just sounds cool. And sometimes my senses are hyper sensitive, so I feel like I have superpowers. The writer in me loves the sci-fi aspects of this illness. :-). The medical professional in me is both puzzled and intrigued. The spiritual part of me is aching to know God’s plan but knows something amazing will result from this. The optimistic part of me is trying to come up with the perfect name for my brain cyst. Something like Mellie, or Seri, or Veronica. Okay, so maybe that’s the writer in me as well. :-)

All things considered, I know God is up to something. I can’t see the larger plan quite yet, but He has led us to see so many specialists so quickly and His hand is clearly at work.

I feel like God is weaving a tapestry with my life and I’m the needle. I can only see the line of thread He’s currently using, but there is a masterpiece forming and an artfulness to each stroke. I must trust He is the Great Artisan, creating an everlasting glory that will shine for Him.

 

On another note, I’d say life is handing me some lemons. So I’ll abide by my motto. I’ve got plenty of time to lay around and experiment with these lemons. Whatever shall they become? 😉

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  • SuzyG

    Sending so many good thoughts and prayers. My husband (also a Jonathan) has been dealing with mysterious medical things for several years now. I can only say that we understand the fear and frustration. God does have reasons for all things, and we keep thinking that if we can maybe just hurry and learn whatever we’re supposed to learn, things will get better. But life is a journey rather than a quick quiz. And so on we go… I truly hope you find answers and relief, friend. Stay strong.

  • http://www.caryncaldwell.com/ Caryn Caldwell

    Oh, no. I had no idea. I hope that everything will be okay. Am sending some get-well vibes your way.

  • Sandra

    Hayley sending you and Johnathan comfort and prayers. Wishing you the best.  I to Church with Johnathan’s parents.  You have a way with your writing that makes my heart smile. I know that God has a plan for you, so just hold on to those lemons just a while longer. In Him.

  • Hu and Vyneta Davis

    Haley we have known many of the Tuckers from the Central Church in Tuscaloosa,  Johnathan’s parents, and Beth are dear friends of ours. We were overwhelmed with the beauty of your writing as you continue to deal with so many difficulties with your health. We definitely will add you to our prayer list. You have a most inspiring attitude toward your health. Hu and Vyneta Davis

  • Beth

    Hayley.  God has certainly given you a gift for words.  I am speechless.  God knows your prayer and all of our prayers.  I only wish to comfort you and let you know that you are loved by many.  I hope you and Jonathan feel that love and that many hands provide you with what you need and you will be better sooner than later.  In the meantime.  I am speechless.  Hugs to both of you.

  • Brendastewart

    My sweet Hayley, I think about you and pray for you each day. Your testimony of God’s faithfulness is inspiring. May you continue to feel His arms wrapped around you. I love you! Brenda

  • nglisson

    Hayley! Thank you for being able to “talk” with us!!! It definitely is a great journey you are on albeit not a pleasant one.. You are showing great maturity and patience because you know that our heavenly father is in control. May He continue to be with you and help you get pain free soon! This is our constant prayer. Love you Mimi

  • Jill Hartline

    I am praying so hard for you. Regardless of how God uses this in the future, He is being glorified simply through your incredible attitude and perspective. I can’t imagine how you must feel, but just know you are an incredible example of the joy and life of Christ in action. Please let me know if I can do anything in any way for you – in the meantime, I’ll keep praying. Love you.

  • Anna Grace

    Wow Hayley!! I’ve been praying for you and your hubby and families. Your faith is quite amazing and truly inspiring! Love you lots cuz!!!
    Anna Grace

  • LisAnnT

    Hayley, you will continue to be in my thoughts and prayers as you experience this “brain cloud” – forgive me! Your faith is inspirational!