Wednesday, June 19, 2013

a new diagnosis

My sweet girl has Lyme disease (on top of everything else)...

I had my doctor's appointment on Friday in Atlanta...but I didn't share that we also had a doctor's appointment for Eliana (or maybe I did share...that's my brain again).  For the past few months God has been preparing me for this appointment.  I believe that with my whole heart!  There are so many pieces to Eliana's little body that just haven't added up.  We have talked to neurologists, psychologists, her therapist...and some of her symptoms just haven't been making sense.  Each doctor would refer us to a different doctor when they couldn't explain her conditions.  Our girl has one of the highest pain tolerances of anyone I know...and for the past few years has complained on and off about her head hurting her.  This is not a headache...this is an "I'm throwing up" from the pain kind of headache.  We chalked it up to maybe she has migraines and we will continue to learn more as she grows older.  Plus, there have been nights where she has cried and yelled about her feet.  She will say "there's crumbs in my feet"...we could massage them for long periods of time and nothing would help.  Another biggie is the rages and insomnia, but we assumed that this was part of her developmental trauma (it probably still is in many ways).  All of that to say...there were still so many question marks.  I received two different emails from two totally different people a few months ago asking me more questions about E.  They asked me, "has she been tested for Lyme disease??" and "have you heard of Lyme rage."  Then, two months ago we went to a homeopathic doctor that ran tests on Eliana to see if we could help with Eliana's sleep and anxiety (in addition to her anti-psychotic and anti-seizure meds)...and guess what??  She said that Eliana was testing positive for spirochetes (aka Lyme). So, we met with my doctor in ATL this past weekend and he tested Eliana (he is also more homeopathic but has treated a TON of lyme patients)...and he found Lyme in Eliana.  So, we are now heading down that road.  I was not completely shocked because I feel like I've been prepared for this...a mother's intuition.  We will never know exactly where we both got it...more than likely we got it at the SAME time in a group of infected ticks.  My body has other co-infections and viruses, so my body is taking it harder than hers.  But, my heart breaks for E!!  I don't want her to suffer, and I don't want her symptoms to get worse.  Chris and I are still processing all of this...not sure how we are really feeling.  Just be praying for the NEXT RIGHT STEPS.  This just can feel so overwhelming.  Hope this makes sense.  I do know that God has not abandoned us...I MEAN, HE GAVE US A CAR THROUGH SOMEONE!!  Thanks friends for your prayers...for money to help with our treatments...for encouragement.  I can't thank y'all enough...we are really going to need prayer over the next few months!!  Love y'all.


Sunday, June 2, 2013

rejoicing in the storm

Most of you have already heard about our unbelievable gift we received this week!  If not, check out Chris's post.  We still keep looking at each other in disbelief every time we get into the car...or talk about the story.  What's so crazy is this gift is about so much more than just a car (even though it's HUGE).  This story is about grace, mercy, and hope...this car is a symbol not just for us but to a lot of people that are questioning God and His goodness.  The beginning of this week looked completely different than the end.  Let's rewind to Tuesday night.  It was not one of my finest nights to say the least.  I can always tell when my body is about to shut's a neat intuition God has given me with my disease.  Different symptoms will start popping up out of nowhere and then I prepare myself for my body to meltdown.  The last two weeks (really since Eliana finished Pre-K) have been rough on my body.  I've been battling debilitating fatigue (I try not to use this lightly).  I have to scrape myself off of my bed in the mornings just to get Eliana ready to go to a baby-sitter because I've been unable to do anything (side note: I will never be able to repay the Rooker family for all they've done to help with Eliana).  I went from bad to worse on Tuesday.  Once Eliana fell asleep Tuesday night, I had a breakdown. 

Every bone in my body head was pounding...the pressure in my head also felt like my head was going to explode...I had a hard time making fists with my gums and teeth were in tremendous amounts of pain...and my throat felt like a knife every time I swallowed.  I told Chris I wanted to be alone because I knew I would snap on him because I wanted to snap on someone.  I took one of my Epsom salt baths and tried to relieve some of the pain.  I cried and cried.  I sent my mom a text to spread the word that I needed prayer.  My mind started I need to go to the hospital??  Am I going to be okay??  The answer to these questions are always a "NO" because very few doctors even know what to do with Lyme patients.  Quite a few doctors will even say, "there is no such thing as Lyme disease in Tennessee."  I have to take a deep breath and ask God to help me not punch them in the face when they say that.  So, I just kept praying and crying most of the night.  My emotions began to escalate the later it got.  I am not one to really get angry...but I definitely did. I remember crying to Chris on this Tuesday night, "WHY WON'T GOD TAKE THIS PAIN AND DISEASE AWAY?!!  I KNOW HE CAN!!"  I haven't really ever verbalized these thoughts.  But, I was angry.  Why God??  Why are so many people praying for me and I'm still not healed.  Why did you decide to allow this disease in the midst of all that we are dealing with our precious Eliana??  A "normal" person would be exhausted while working with E and her anxieties.  Let's just say that was one LONG night.  I slept about two hours...and woke up feeling very overwhelmed. 

That Wednesday morning we had Eliana's two hour in-home therapist come to our house to work with E.  I spent the next two hours trying to keep my mind focused and listen to all of Melody's words of wisdom for E (she is AMAZING)...and then was able to send Eliana off with her baby-sitter right after.  I fell sound asleep.  Then, I get woken up to Chris shaking me saying "Lindsey, I've got really good news.  Someone has bought us a car."  It took me a while to register what was going on.  Chris and I drove to the car lot so confused by what was going on.  We get there and are stunned that someone did actually buy Chris a car...a perfect car for him.  They also made the most unbelievable gift basket for our family filled with notes and gift cards (they know my love language).  Each gift card was so specific and was hand-picked to bless Chris, Eliana and me.  Plus, they put a huge bag of our favorite popcorn.  Seriously?!!  A car wasn't enough...Anonymous created one of the most amazing gifts ever to go with it!!  BLOWN AWAY!!  I think I've said that a few hundred times in the last few days.

Chris and I can't stop thanking God, sharing this story, asking God to bless whoever gave this to us, praying that others would be encouraged by this story...that God would be glorified.   It's made me hyper-aware to be on the lookout for people's needs that we can help matter how small.  To say that I was completely humbled by this experience is an understatement.  I went from being so upset with God, questioning receiving gift after gift after gift.  It didn't stop with the car or the gift cards.  A few people have sent us money for baby-sitting for Eliana...a friend from Focus on the Family sent us a check the other day for the amount we will need for our doctor's appointments in Atlanta for June 14th. A few people have given on our Give Forward page...and I have received some of the most encouraging, hope-filled emails (I promise to write ya'll back soon).  It has literally been one thing after the other.  I am just so in grateful.  God just keeps reminding me that He has got us in His hand...that He has not abandoned us...that He loves us and knows what is best for us.  While I might think that healing for Eliana and me is what is best for us, God knows how the story ends.  He knows what I need, when I need it.  So, even in the midst of the continued pain/fatigue, my prayer is to rejoice in this storm.  I definitely still need has been another rough day.  But, thank you friends for getting excited with us, for praying for us, for "liking" our pictures on facebook/instagram, for sending us messages, for giving financially, for sharing our story...we love you all so much.


P.S.  This picture is from today of E having a blast in the rain...thought it fit perfectly!


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