grateful

Just needed y'all to know how grateful I am for each of you.  I have watched God provide in ways I never dreamed possible through our Give Forward account.  You will never know how much it means to us.  I feel like it has been a huge burden lifted...and there is a clean slate in front of us.  We love each of you!!  We are so humbled and thankful.  There is a lot going on in my head, but tonight this is what I needed you to know.  Lots of love.

The Wheeler family

a picture is worth a thousand words

...just a few reasons I love being Eliana's momma.  Every day is an adventure. 

 I am so proud to call her my daughter.  

curve ball

So, I thought I was tired last week when I posted.  Ha!  We have been thrown a few curve balls in the last week.  My appointment for my Lyme disease was tough and good all at the same time.  I cried to the nurse...I cried to the doctor.  I basically didn't stop crying the entire time.  I think that's called an emotional breakdown.  My wise, caring doctor looked at me and said, "Lindsey, we are going to see you heal.  Don't forget that it is baby steps."  He then prayed for me and gave me a huge hug.  I sobbed.  They started me on some new supplements to help with the severe fatigue.  I walked out of the office and felt relief.  He got it.  He got that I am not just dealing with Lyme disease...I am also dealing with a precious little Guatemalan who requires a lot of attention.  And, I realized I need to give myself a break...I have been feeling like such a failure.  He reassured me that I am not a failure, I am sick.  Thank you Jesus for that sweet reminder.

Fast foward about one day...and pain and fatigue doesn't even cut it.  I felt like absolute death.  I didn't get out of bed.  I didn't want to move.  I could barely raise my arms.  I walked outside one day for a few minutes to get some fresh air, and my neighbors all said I looked so pale and sick.  Treating Chronic Lyme is tricky...and when you are actually healing, you feel SO MUCH worse.  It's called a herx.  And boy did I have a herx.  In the moment, you feel like you will never get out of it.  Thankfully, I was able to move again on Wednesday.

Now comes the part that we add Eliana into the equation...since her last ER visit, she has been complaining about her head hurting.  Normally, that would not be a big deal...but my child has the highest pain tolerance of any child I've ever met.  All day Wednesday, she would tell me her head hurts.  I knew something was wrong.  This will make you gasp (at least it did me)...we were all outside with the neighbors and she asked to go to bed at 7:45 p.m.  She has never asked to go to bed in the history of her life and especially not when the sun was still outside.  She fell asleep saying her head hurt.  Then, the seizures started again.  She also threw up a few times too.  Ever since Wednesday, her fatigue has been intense (this is a child that always has energy).  She has had fevers on and off...complains of head pain...and sleeps.  She didn't get off of the couch all day Thursday and until 3 today.  That is not our sweet girl.

Chris and I took her to her neurology appointment today fully ready to unload all of the things that are going wrong and things that have really been concerning us.  She could not even hold her head up during the doctor's visit.  She fell asleep in my arms and was burning up.  The neurologist looked at us and said that he thinks the "breakthrough" seizures of the last 2 weeks are probably from her dealing with a virus.  The headaches did not seem to concern him.  THEY REALLY CONCERNED ME!  After watching her for a little bit, he told us to take her down to the ER and get her looked at to make sure it is not the flu or something else.  (It was at this point that Chris and I made the decision we are going to have an ER kit/bag that we keep in our cars because this place is becoming our second home).

So, when the second doctor of the night came in...we told Eliana's history all over again.  We told about her hospital stay 2 months ago...and the events of the last 2 weeks.  She looked at me and said, "Has she had any tick bites?"  I think I let out a little scream...and then I wanted to hug her for even admitting ticks cause problems.  And yes, Eliana has been bitten by ticks in the last month.  I hate ticks...despise them in fact.  I took another one off of her this morning.  She then says, her symptoms of the last 2 weeks sound a lot like Rocky Mountain Spotted Fever.  I think I'm still in shock when I say it.  They think she has been infected...to the point that they started her on Doxycycline (what I first took when the doctors finally figured out I had Lyme).  We will have definitive results in 3 days.  I immediately started reading about this tick disease.  Fevers, chills, loss of appetite, headaches, vomiting...etc.  Yep, she's had all of that.  Poor sweet baby.  I am so thankful for an ER doctor that was proactive and didn't just say she has a virus and send us away.  She actually listened to me when I said the head pain is so unusual for her...and that throwing up is not a normal thing after she complains about her head.  It seems so unreal that we would both have diseases from ticks.  I hate them.  So, our trip to the neurologist ended up being 8 hours in the ER with an ending that I would have NEVER guessed.  I am begging God to protect her little body and heal our family.  Thanks for praying for us...for caring.  God is in this...I know He is.  It's just hard to see right now.

Love y'all,
Lindsey

the pendulum of pain

"But pain insists upon being attended to. God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is His megaphone to rouse a deaf world."

--C.S. Lewis

I think I've kind of done a pitiful job of "attending" to my pain. I haven't written in a while because my fatigue has been so intense and my hands have been hurting so much, but I wanted to share an update about our precious Eliana (and me).  I feel like Eliana's struggles and anxiety have been on one side of a pendulum and my Lyme disease and fatigue have been on the other side.  We keep going back and forth.  When she is struggling, I try desperately to forget that I am sick.  When I'm really sick, I try to convince myself that she is better. The days where our pain overlaps are the days I feel like I can't take another step.  I've had a few of those over the last week. I think I have been living in survival mode for quite a while and I'm ready to be done with it.  


Lyme disease is really difficult to explain to people because you look normal.  You might even actually have a few "good" days.  But, then you will wake up and feel like:   
A. you have run a marathon and you didn't train   
B. every bone and muscle in your body hurts to the point you don't want to move  
C. you have pulled 5 all nighters in a row when actually you have slept 18 hours a day


In the last few weeks I can honestly say, D. ALL OF THE ABOVE!  Chris is such an amazing husband...he truly loves me so well through this.  But, for some reason, I feel like I have to explain that I really am truly sick to him and all of my neighbors because my house looks like a bomb has gone off, we have 12 loads of laundry that need to be done, I don't have the energy to even think about cooking/doing grocery shopping.  I need to be exercising and I literally can't.  I was riding my bike a few weeks ago and the day after I exercised, I would be on the couch the entire next day.  I guess I'm telling y'all this because I have another big Lyme appointment tomorrow morning.  I need a new plan...a new treatment.  I know I can't do IV antibiotics because I live with a wild child.  But, I need something to bring hope.  Please be praying so much for this appointment and for the strength for me to do whatever needs to be done.


So, on Monday, I was having a rough day feeling like D. ALL OF THE ABOVE...and out of the blue, Eliana had a really bad seizure.  I obviously have not done enough researching because I thought that she couldn't have seizures because she was now on medication.  WRONG!  It was pretty awful.  I saw her drifting as I drove up in our driveway, and immediately started yelling her name.  I grabbed her out of her car seat and she was pretty lifeless experiencing weird convulsions that I have never seen.  I tried pinching her and she would not respond.  I freaked.  Thank the Lord, my sweet neighbors all ran to my side and stood over Eliana trying to keep her alert and awake until we got the okay from the neurologist that she could sleep.  Chris got home, and she fell asleep immediately.  Seizures take it out of you.  She slept about an hour and a half and woke up having another really bad seizure...this one lasted even longer.  The neurologist told us to hang up and call 911.  Not a fun phone call to make.  The ambulance came and we headed to Vanderbilt ER again.  Once we got there, we were escorted in a little room.  She was really tired but kept complaining about her head hurting (she NEVER complains about pain) and then she would start throwing up.  We believe she was having a migraine headache after the seizures.  She threw up a lot.  And literally, after hours of being there, they upped her anti-seizure medication and told us to keep a close watch on her.  It wasn't quite the answers I wanted, but we have 3 appointments for her next week alone to dig deeper.  I haven't really slept well since Monday night...and my body is aching.  But, I am watching her like a hawk.  Ultimately, I know the Lord has her in His hands...way better than mine.  I just hate watching her struggle (much like my mama hates watching me struggle with Lyme).  The medicine has made her pretty lethargic...which is not like her.  But, I am praying her body adjusts.  Thanks for praying for her and her little body.  She is so precious in every way!!  

We love you all so much,
Lindsey


P.S.  A couple of weeks ago, I started a fundraiser page to help with some of our medical costs, if you want to help us out, go to:  www.giveforward.com/thewheelerfamily.  Thank you SO MUCH to everyone that has already given...it really has gotten me through this week!!