reflections from a nursing home

I would have never picked a nursing home.  As I walked down the hallways filled with smells and doors I was scared to walk through, I had wild thoughts jumping around in my head.  How the heck did I get here?  What was I doing? I could not do this.  Yet, here I was, fulfilling a pre-requisite to the nursing program I was hoping to be accepted to.  This was, by far, the most challenging pre-requisite to complete.  Not just because the only time I could take it was on the weekends…the weekend after a full load of other pre-requisites.  And not just because it was true hands-on training in the medical field that would either make or break my dream of becoming a nurse.  It was because, out of all the jobs I would say I would ever have, working at a nursing home was never one of them.

I love people.  I love old people, young people, broken people and inspiring people.  Truly, God made me to love people.  So, my aversion to nursing homes was not about the people, as much as the place.  I did not know what to expect, and the population in general was intimidating to me.  What do you say to someone who is asking questions that make no sense because their mind is wracked with Alzheimer’s?  How was I going to handle situations when the patient was in a vulnerable position and needed help that to me, seemed a bit embarrassing?  How would I deal with facing the fact that someday, I might be one of those aged souls, needing this amount of help? 

Working in the nursing home taught me lessons that I will take through life, and has caused much reflection in my heart.  I thought I would share what nine weekends of CNA training brought to light- the funny and the serious reflections that still clang around in my mind.

Family involvement is everything.  It was amazing to see the people who had family involved in their care, and there were subtle differences.  I am not talking about differences in the quality of care- but in the way the patient was cared for.  When someone shows up to eat a meal with the patient stuck in bed, it gives them so much joy and something wonderful to look forward to.  When the resident’s laundry was done by family and smelled of fresh dryer sheets…notes on the whiteboard and pictures around…these things made a difference. Families who stay involved bless the individual in the nursing home. 

Providing personal care for patients was not embarrassing at all.  I was greatly impressed with our training on patient privacy, and many CNA’s take the task seriously.  Whether due to surgery, injury or inability, the fact is that some people just need to wear briefs (adult diapers) and they need to be changed often.  I was really concerned about keeping the patient’s dignity in this process, along with when there were shower needs to help with.  I will boil it all down to this- it was an honor to help someone with their most basic needs.  That is not to say that at times it was not a challenge, but in the end, compassion won over any gross-out factor, and it somehow felt like being the hands and feet of Jesus.  It is not glamourous to change briefs or scrub hair that smells and has not been washed in over a week. But there is a quiet sense of fulfillment that comes from helping the helpless.  That blessed my heart in unexpected ways.

The biggest lesson I learned on personal health is this: KEEP MOVING.  When patients became bed-bound, bed sores were a daily battle to fight and it seems to go downhill from there.  I truly was inspired even more to take care of my physical being, and stay physically strong.  I believe that just simply walking is helpful to keep the body moving, and also to keep the mind strong.  I have told my husband many times that my goal in life is to always be as active as I can be.  So, to this end, I will bike, run, jog, stretch, eat my veggies, hydrate well and KEEP MOVING as I age.

Although there were so many learning lessons I will take with me, the most profound was something I would say quite often after the day was over and I was coming home to my family.  I would tell Levi and my boys, “It is amazing the difference that Jesus makes.  You can almost just feel it when you walk into their room.”

I am not into “feelings faith” where we rely on emotion of the moment to get us through…I am actually a fairly conservative, Bible-based-facts type of person who will raise her hands in surrendered worship, but stop short of being slain in the spirit, LOL. I know with all my heart I have felt the Lord’s presence, but I also am grounded on reality.   I explain this as a backdrop to help you understand what I mean when I say….I truly could walk into a room and feel Jesus there with the person. There was hope in their eyes and in their face, even amidst troubling circumstances.  There was kindness in their requests, even if they were in pain.  There was an air of dignity about them, even in the most humbling of times.  There was a lightness to the room that was truly unexplainable.

I will never forget the first weekend that Stephanie and I were immersed in the reality of CNA work and the aging population. We were both a bit shell-shocked and hanging on for dear life, truly praying that the Lord would give us strength to get through the things that were hard for us (smells, the sadness, fear of vomiting etc.).  We took vitals, learned how to do a bed bath, provided for basic needs like food, teeth brushing and then it was time to check on the next room.  There was a frail woman laying on her bed, asleep with flowers on her little table. She was in short term, recovering from some health issue, and slightly confused.  She had a card from her church and her Bible on her nightstand. And there was a sweet peace in her quiet little room, abiding, as she slept there.  In the week that followed, we would get to see her awake and help her eat.  Through confusion, there was always a gentle confidence about her, and a ready smile.  Even though she struggled, she was joy and she was light. She had Jesus in her heart- the proof was all over her life.  Stephanie and I both loved taking care of her humble, confused little self. She was a joy.

This picture in my mind is frozen in time, and contrasted to another picture- one that breaks my heart and formed training wheels for my future in medicine. It seems that no matter what facility we went to, no matter what weekend, there was always that one lady that was in extreme pain with no hope.. fighting anger, bitterness at life and desperation evident in their eyes. I saw one of the worst bed sores that had tunneled deep into tissue on a patient that was dying. It was sad, and it was horrible. But what was the most horrible was the times that people were suffering either loudly or silently, and I was not sure that they had Jesus to cling to.

I have told my boys the more gentle lessons I have learned…and the heart of it has been this: Jesus is our anchor. He is the one thing that we can hold on to, whether rich or poor, living in squalor or wealth, it is He alone who gives us our dignity. In storms, in pain, in helpless situations and when we become a shell of who we used to be- He is our sustenance. And for anyone who questions if Jesus is real- if it all is just a story that makes us feel better when we are scared or sad, I can tell you, I have seen the difference. At the end of my days, I want to know Jesus better than I know him now. I want my children and grandchildren to walk into my room and see me in peace, joyful at the expectancy of Jesus.

At this time of the year, we are expectant of Christmas. We prepare meals, presents, dinner parties and plans.  It’s a season of joy abundant. One of my favorite things is looking at Christmas lights all around town, snuggled up with my family in the car and hot cocoa in our hands.  We drive to the places we know will be decorated with hundreds of lights, expectant of beauty to behold. I hope that along with the celebration, that we find room for the expectancy of Christ.  I have been doing a devotional that reminds me of this:  Immanuel, meaning Christ with us, came down to live among us.  And though he died, so that we may live without the consequence of eternal death, He never left us.  He gave us His Spirit as a deposit, guaranteeing what is to come and given us His seal upon us (2 Corinthians 1:22).  We have the hope of Jesus, the hope of heaven, this Christmas season.  May its true gift not be lost on us.  May we live like God’s precious people, looking more like Him every day, and being a discernable reflection of Him.  We all have an expiration date…I think that’s what stared me in the face the most at the nursing homes.  I want to live every day for Jesus, because at the end of the day, that is what life is all about.

I am grateful for the weekends that I spent with people’s grandparents and loved ones. I treated every person the way I would want my grandparents treated.  I do believe that there are many amazing CNA’s that feel the same way.

I am going to enjoy Christmas break with my family and get ready for the next round of classes in January and am so excited to see where the Lord continues to lead.  I can tell you one thing, Lyme Disease has another thing coming.  I think that between Steph and I, it may have met its match. 

 God bless each of you that need hope this season.  Jesus came and Jesus lives.  Immanuel, God is with you, precious soul. 

MERRY CHRISTMAS!!!

Boom. Twenty-one credits, one term: done.

lead me to the rock that is higher than i

***This post was written after our first round of treatment for Lyme Disease (locally) and before our treatment began in Germany***

It begins with a sharp cry.  I instantly know the sound.  My heart drops and I am moving out of bed in a panic before I am even fully aware.  I run up the stairs with a rock in my gut and the speed of every mother running to her child in need.  Because I know exactly what's happening.  My son is having a seizure. 

It's the same sound, every time.  The same instinctual need to run.  Every time.  It only happens in the night.  I am awakened out of a dead sleep with an anxiety I recognize and think about every night just before sleep overtakes me.  I pray.  Before bed I usually try to mentally prepare in case tonight is the night that another one will awake us.

He cries.  He sits up in bed and is seized by something that overtakes him.  It causes him pain.  He can talk and he begs me to help him.  He is scared and panicked.  It's 3:46 a.m.  I watch the clock behind his head.  I try to hold him and comfort him.  He sits up and clutches his arms to his chest as he shivers and shakes.  I beg God for help.  I want to scream to the whole world to help.  I am helpless.  There is nothing I can do.  I watch my son desperate for help and there is nothing I can offer.  There are no words that can describe the angst in my mommy heart.  It breaks.  It gets terrified.  My son....my son.  Oh how I wish I could take it.  How I wish I knew why. 

My touch seems to hurt him.  He cries loudly and shrieks.  He say's "oww."  I don't know what is hurting him and I can't touch him.  He is not able to communicate much with me but he is more verbal during these seizures than he used to be.  I try to ask him what exactly hurts.  He tells me his neck.  His head.  I try to gain any clues I can to give to his doctor so that we can stop these seizures.  I am desperate for answers. 

As the seizure goes on and on I watch the clock.  Two minutes go by.  At what point do I call an ambulance?  I am not seasoned at this.  I am not the mom that has a son with seizures.  When did this happen?  God, please make it stop.  Please.  I plead.  With every second that passes, even without verbalizing, my heart is pleading with the Lord. 

Four minutes.  It seems like he is starting to come out of it.  He stands up, shaky.  He is confused.  He tries to walk downstairs to get water and seems to not realize that he has been awake for a while, seizing.  His mind is just now finding consciousness and every fiber of my being is on high alert.  I rush to his side to steady him as he sleepily walks down the stairs like nothing just happened.  I hold him as he goes to the kitchen to get water.  He is so tired.  I ask him if he remembers having a seizure.  He says no. Barely.  Then he walks back up to bed and lays his head down, mumbling that it hurts.  My heart hurts.  I cover him up.  I kiss his head.  It's over.  I stumble down the stairs back to my bed...and lay there.  I process everything that just happened.  I try not to be terrified.  I try to pray and set it aside because the terror feels like it will engulf me if I don't.  I lay there awake, unable to go back to sleep.

Nights like tonight as I pray over my son before I go to bed...I can't go to sleep.  I start to pray, asking the God of heaven and earth, the Maker who formed my son, to take away his seizures.  And tears stream down my face.  Not because I am angry at God.  And not because I don't think He cares.  But because for now, even though I have prayed He would take it away, He has asked us to carry this load.

I think of so many mothers and fathers....asked to carry a heavy load.  The load of grief...the load of sorrow.  The heavy weight of pain.  There is nothing like watching your child suffer to bring out the searing scald of a torn heart. 

These nights, I cling to the Lord.  I don't know what lays ahead.  There is no known reason for the seizures.  An MRI yielded no diagnosis.  Treatment for Lyme did not cure it.  I had held onto the hope that it would.  He is my funny boy- with a tender soul and eyes that sparkle when he's mischievous or when he tells a joke.  As a baby he was fussy but he loved his pacifier.  We would smile and pop it out of his mouth because he always had it in.  He would give a grin, grab the pacifier and pop it back in his mouth.  On and on this game would go...it's one of the "funnies" that we tell Wyatt often about his baby days.  He has never loved to snuggle as much as he does now.  And I treasure it.  I hold him a little tighter, too afraid to give in to fear.  But the edge of fear is there, staring me down.

But in those times when my fear feels like it will swallow me whole, I have to consciously CHOOSE to do the only thing I know how to do.  I tip-toe back, into the shelter of the Most High.  The One who hears me, and knows me.  Back to my Father who knows my needs before I even ask.  The One who loves my son with a love even greater than I could ever possess...a perfect love.  One without sin.  A love that desires all the wholeness and fullness of what Christ died to give his children.  This is the One who holds my son.  Even in the dark of night when my heart erupts in terror as his cries rise up.

I have been delaying posting this.  I have put a whole pause on this blog as a whole for months.  Because I thought that our season of "hard" was over.  I thought that we would turn the page, say good-bye to Lyme and welcome happier days ahead.  I have wanted to write about happy and funny things, and not be a blog writer that focuses on the "hard" of life.  Time and again, I feel the Lord telling me to be honest...to write about where He has us right now, without putting on the pretty fake sugar coating that I would like to.  He has told me to write about suffering.  Not suffering as some have walked through, as there are levels to suffering.  But suffering, all the same for my family. 

For those of you walking through Lyme, I want to let you know that I will do a post following this one, that will talk about test results and treatment information.  I said I would at the beginning of this blog journey, and I will!  It has just taken me a while to mentally be able to unpack everything following such a grueling treatment.  It takes mental energy to think about Lyme because more than anything I would like to ignore it.  At least for a while.

I will end with this verse...the verse I have prayed to the Lord when sleep doesn't suffice and fear seems to overcome.  I know with all my heart, more than ever, that my God is alive.

FROM THE END OF THE EARTH
WILL I CRY TO YOU.  WHEN MY
HEART IS
OVERWHELMED,
LEAD ME TO THE ROCK THAT IS
HIGHER THAN I.
Psalms 61:2

the silent saturday

The phrase rolled around in my mind in the early morning hours.  It was the time in between time...not quite awake yet not quite asleep.  In recent years it has been during this in between that I sometimes find myself hashing things out with the Lord, before awakeness overtakes me.  Before the days struggles begin.

Good Friday has felt more real to me this year than it has in a while.  I think maybe it's because I was greeted with the truth of my humanness more this year than ever before.  Not just a spiritual humanness, but a physical kind.  Two years ago I was still feeling young and invincible.  Being so sick brought me face to face with what I would do if I never got better.

I went to bed last night feeling conflicted...so grateful for Jesus' death on the cross and the gift of grace He has given that that I do not deserve.  I went to sleep knowing that His sacrifice means life for me- and victory.  But also, a certain level of heart-ache,  understanding that it does not excuse us from trials and sorrow on this earth.  Being a Christ-follower does not get you a pain-free life.  It does not guarantee that we won't face heart-break.  And I think that's where some of us go sideways in our walk with the Lord.  I know I did.

 "The silent Saturday."  I don't even know where that phrase came from or if I have heard it before in the past.  But as it repeated in every corner of my mind, I knew exactly what it meant.  It's what happens after we say "It is finished" with defeat in our hearts. The end of the road, the end of our strength.  The last shreds of our hope, crucified.

When Jesus breathed His last, He uttered those words.  But it was not a cry of defeat.  "It is finished..."  His body broken on a cross- the life went out of Him.  "Joseph took the body, wrapped it in a clean linen cloth, and placed it in his own new tomb that he had cut out of the rock.  He rolled a big stone in front of the entrance to the tomb and went away."  (Matthew 27:59)

Silence.  The silent Saturday.  I wonder what the people thought as they wept at the foot of the cross.  It was the third day when the disciples said, "He was a prophet, powerful in word and deed....we had hoped that he was the one who was going to redeem Israel." (Luke 24:19,21)  They had walked with Jesus and learned from Him...they had known sweet fellowship with their Lord...but now He was gone, and they were left wondering.  Lacking faith.

It reminds me of the questions I have had when I read the account of Lazarus.  I have often wondered how Mary and Martha felt, as they were laboring over their sick brother, knowing He needed Jesus.  As their agony turned to grief when Lazarus died, there was silence from the Lord.  John 11:5-6 says, "Jesus loved Martha and her sister and Lazarus.  Yet when he heard that Lazarus was sick, he stayed where he was two more days."

Though it clearly says that Jesus loved Martha, Mary and Lazarus, I would bet you that the temptation was there to believe that he didn't care.  I wonder if there was any hint of accusation in Martha's voice when she said to Jesus, "Lord, if you had been here, my brother would not have died."

There are periods in our life like that.  In fact, you might be in one now.  I am slowly coming out of mine.  I was so quietly broken before the Lord,  I accused Him of not caring.  There is a whole back-story to our lives before Lyme.  I will not go into it, but I was already begging the Lord for rest.  We had been through a weary season- a season that felt so unfair.  I still remember sinking down onto the floor of my pantry, sobbing before the Lord in the only place my children would not look for me.  I had just found out I had Lyme Disease, and I knew the fight that I was in for both physically and financially.  It felt like too much.  We had just found out that my precious middle boy was having seizures.  It felt like life was closing in on me, and at a time that I was begging God for rest, he gave me another mountain that I did not have the strength to trudge over. It felt like He was so silent.  And I accused Him, I begged of Him and I doubted Him.  I was Martha, second guessing the Lord and feeling like hope was lost.

The irony is not lost on me that the very words "It is finished" that we can utter in defeat are the very words that Christ spoke to welcome in victory.  All the earth shook and creation mourned the slain lamb as the story of a Saviors overcoming love was forever written in time.  In death, life was born to us.  "It is finished" nailed our shame to a cross as He took the punishment we deserved.  "It is finished" gave us entrance into the Holy of Holies- His Spirit in our hearts, and citizenship into a heavenly kingdom that awaits us.

"It is finished" ALLOWED DEATH,  

so that LIFE could be raised from the dead.   

The very moment that the disciples were lamenting their lost hope, it was Jesus who they were talking to.  He was raised...the disciples just did not know it yet.  They had heard...and they had seen with their own eyes, but they did not recognize Him.  The very Jesus that they had hoped "would redeem Israel" had done just that.  And He was walking among them.  Read the passage of Scripture yourself in Luke 24.

We cannot see the whole story...only God can.  The disciples lost sight of hope when their Savior- the one who was supposed to save them- died on a cross.  They could not see how death could be victorious.  Martha lost sight of hope when her brother died...forgetting that with God, death could be vanquished forever.  We too can lose sight of hope, because we do not see any way in which our situation could possibly work out.  We are too tired, too broken, too you name it.

So what do we do when we can only see the "It is finished" part of the story and it seems that God is silent?  When, like Job, we look for Him but he is nowhere to be found?  I will tell you what I have done, though I did not walk a perfectly faithful road.  I doubted, but I kept clinging to Christ.  I had good days and bad, and the Lord brought me through.

1. WE CHOOSE.  We choose to believe that even in the dark, and though we don't see the path, that God is still making a way.  A way for our hearts to go on.  We choose to trust the character of our God.

 2. WE REMEMBER....all that He has brought us through.  We remember His death on the cross and a Saviors love that did not stop short of giving His all.  Because He suffered for us, He knows pain and suffering intimately.  We remember that the God who made you is the God who pursues you and loves you - He is the God that will sustain you.

3. YOU WALK ON.  Faith is not based on feeling- it's based on a belief invisible.  We won't always feel a spiritual high.  Neither will we always feel like praying or doing the work to open His Word.  But you press on in the dark, in the weary.

Why?  Because there is a resurrection Sunday.  Because after the silent Saturday the tomb is overcome.  THE TOMB IS OVERCOME.  There is hope!  Jesus himself is our hope.  The last words of Jesus, recorded in Matthew is balm to a weary soul.  "And surely I am with you always, to the very end of the age."  (Matthew 28:20)

He is.  He is with you.  He loves you.  I pray that if you are reading this post and you are in a silent saturday season, that you would feel the Lord sustaining you, and that you would feel His peace upon you.  I think there are seasons where talking with a trusted authority in Christ (your pastor), or a Christian counselor are deeply helpful and needed.  These trusted individuals are able to listen past the words that we are saying, and help target area's where our perspective or belief system could use a shift.  They can also help support you and pray for you.

God bless each of you this Easter weekend.  May we walk in the strength of Jesus and trust Him in every season.  And may we each expectantly await Resurrection Sunday.  Mary and Martha, the very ones who wondered where Jesus was while Lazarus died- were the ones who waited at the tomb. (Matthew 27:61) They knew where their hope was from.  Through the dark, and in the waiting....faith was born.

his love was greater

I have not had the desire to write much...so this blog has been neglected.  It won't be for long- I have had a blog post brewing for several months but don't quite have all the words yet.  The Lord is working on my heart still.  But I want to come online and post something I posted today on my Facebook feed and give a shoutout to those struggling with Lyme.  Hope matters...Jesus brings hope in impossible situations.  This is largly what my next blog post will be about. But for now, this:

Today, I am grateful.  So grateful that at my very worst, Christ looked at me and loved me.  He died so that I might be free...free not just from eternal death but free from the things that strangle the life out of us on this earth- things that have us in chains.  He freed me from the chains of fear.  He also freed me from the chains of an eating disorder.  He has been my hope and source of undeniable strength through a Lyme diagnosis of myself and my children that broke my heart and tested my faith.  He is the Shepherd of my life and the Savior of my soul.  

Thank you, Jesus that you gave everything to clothe me with robes of righteousness not my own. 

Today, I hope each of us pause to truly let the truth sink in all over again...His love is awesome and it never ends, no matter how much shame fills our heart..."my sin was great, His love was greater..." He nailed our sin the the cross and buried death and defeat.  Praise God!!!

 

What did God free you from?! ❤

fifteen weeks

We are through treatment! (Insert balloons, launch the confetti and screech out some hollers of joy!!!  Its a total party every day in our house, even if just deep inside our weary hearts!)

We had planned on doing treatment a full twenty weeks, which is close to the maximum amount of treatment time the doctor in Germany does.  But after much prayer and analyzing, we decided to stop treatment at week fifteen.  The majority of our symptoms have eased and I do believe that whatever healing and benefit we were to receive from this treatment has already been completed.  I took one much needed week off with my family to just "be still", so I am late posting this update.  Last Sunday would have been our start of week sixteen, so today makes it exactly one week free from treatment.  It's glorious. :-)

I have been fairly silent about my children's treatment through all of this for their sake, but I can tell you that as a mom, I am so glad it's over.  It has been a long road for us three....a long road also for my precious husband and oldest son (who is not in treatment yet). They have been supportive and compassionate to us through it all, helping us see joy in the midst of a trying time. Levi was not able to make it to every IV day, but several times it was just too hard to do alone, and one of our children just needed DAD.  He would leave work to come, and somehow the moment didn't seem so dark, didn't feel so lonely.  Dads hands would hold and comfort crying son, and bring a naturally joyful personality that we needed so badly.  Their daddy's big strong presence seemed to make the scary less scary...yes, I saw some beauty in sad places.  Places I would really rather never go again.

So many loved ones showed support both in text, Facebook comments, likes, prayer, hugs, visits to our infusion days, meals, groceries, offers for help, gifts, help cleaning at home, flowers (many times!) an honest conversation and genuine concern.  Through the clouds, there were so many blessings.  Our family is deeply humbled and so grateful.  We are excited to be on the helping end of things- we are ready and praying that we can move right along and turn the page on Lyme healing, and bring on some helping to others who are where we have been!

Rather than try to describe where things are at, I will just list previous symptoms and then update where I am at today.  This is a list I have copied from an earlier post entitled "it all began in 2012."  It is lengthy, so I will try not to add much to it.  I did not expect to have to process so much emotionally after watching my children come through this grueling treatment, so I don't feel like I have much capability to add any more to this post other than basic information.  If you are following this blog because you are looking at going through this treatment, please feel free to email me any questions, and hopefully in the months to come I will have much more information to share.

So here goes my symptoms list, past and present.

Extreme fatigue  

- Present but soooo much better

Sweaty at random times 

- Yes, sometimes still! (Babesia is a jerk)

Anxiety 

- No!

Drenching night sweats 

- Minor night sweats (currently doing hormone therapy so we will see if that helps.  Could also be Babesia.)  

Nausea, especially at night 

- Nope

Ear ringing 

- No.  Although I did notice it for a tiny spell a few weeks ago.  I would usually get it a few times a week, so it's not like that anymore at all.

Hot flashes 

-Rare

Vision flashes 

-No; my eyes are sore at times still.  Like I need to close my eyes.

Achy- constant and worse at night,( like a case of the flu) migrating from hand to leg then other leg etc. 

- At times I have joint pain in my knees but it feels different...it still bothers me and makes me fearful that Lyme has not left all the way, but it doesn't migrate anymore.  It just feels like very tired knees and is no longer a debilitating need to sit down when I feel that way.

Occasional deep stabbing pains in random body parts lasting for seconds, then leaving 
- I forgot about this symptom- I haven't noticed this for a while!

Hand pain in joints, burning at times 

- No!  

Weakness with grip 

-I do still feel weak at times, but is better

Heart flutters 

- Yes.  

“Shaky” all over 

-No more.  Sometimes after exercise I feel funky, similar to restless leg.  But I don't feel faint anymore.

Neck stiffness 

-No. Tight muscles in my neck, yes.

Headache, tightness 

- Sometimes.  Still have random sinus pressure at times.  Not lasting all day...I had a reaction to a chlorinated pool - I think my body is sensitive to toxins and mold.  Wood smoke also gives me an immediate headache.

Struggle with feeling hopeless 

- No.  I know the depths of this one and I am so grateful that the Lord has worked on my heart, but also there was no way to get out of this one without PHYSICAL help.  It was not just my emotions, but my brain begging for relief.  I am so thankful that I feel hope alive again.  My heart could burst with thanks.

Feel overwhelmed 

- LOL.  Yes at times.  (is this a symptom of life?!)  

Have to fight off confusion, don’t know why 

- I have clarity of thought!

Loss of consistent thought ability 

- I can have a thought start to finish.  No longer does it feel like I can't sort out the "background noise" of life.  I can organize my thoughts and make sense to myself again.  

Inability to multi-task 

- I do still struggle a bit, but its more because there is so much on my mind.  I am trying to get my life back after feeling like it fell apart and there is a lot going on.  

Heavy arms and legs- feels like I am walking through mud, lifting 50 pound weights 

-No.  I am tired for sure, but I don't feel like I am constantly pulling a uhaul trailer behind me, loaded down to the max.  

Decreased exercise stamina, get dizzy and faint 

- I still am not up for running (but for short distances) and I get nauseated afterwards.  My adrenals, thyroid, hormones and glucose balance is a bit of a mess right now...my body has some healing to do still in this area.  It's hard to be patient because I miss running.

Arms go numb while driving or trying to hold my arms up to read a book in bed 

-No!

Memory loss- short and long term 

-Some times I still have a hard time hanging on to details, but I am 90% better than I was.  Life makes sense again.  I can't explain what a victory being able to say those four words are.  I will never take my mental tracking for granted again!

Must use calendar and lists to remember anything 

-(smile) I still use a calendar for everything but I am no longer in a fog.  I can grasp whats coming up in my week rather than feeling like a ghost of me made plans and can't remember doing it!

Need for sleep, even after a full night’s sleep 

- Mostly I no longer lay down during the day.  That is huge.  I am still tired, especially on the weekends and I notice it in my children too.  But I don't sleep the long hours like I used to. I am up in the mornings by 6:30 because my body wants to be up. (I heart that)

Feel like I am losing my mind 

-Praise be to God, only very rarely do I feel like this anymore!  I think I am traumatized at life, LOL, still trying to come to grips with what I thought life would be like and where we are at right now.  The Lord has allowed us to walk a hard season that I probably could not fully explain to anyone.  But I don't feel like my mind is incapable anymore...I feel sane.  It was a joke for so long, but there was such desperation behind it.  I would say "I am crazy!" and mean it.  Now if I say it, it means I am having a crazy moment, or a crazy day- not that I honestly feel like a shred of the person I was.  

Sad and unexplainably overwhelmed by life 

- Hmm, still healing on a soul level, but very much less overwhelmed.

Sudden bouts of needing more oxygen while laying down, but breathing fine (called "air-hunger") 

- Unfortunately, I do still feel this every once in a while. (Babesia!)

Anxiety over more than one event in a day 

- No :-)  What a joy to function again

“barely hanging on” 

- No, but I have some tools to function, haha.  I have brought coffee back because I am an addict that was off of it for far too long.  This is terrible for my adrenal, I know, but I am giving myself some grace for a few weeks...maybe a month. LOL

Consistent knee pain that throbs and aches deep (has felt like a sports injury from running hills, but consistently gets worse even with rest)  

- Sometimes after I have been on my feet all day but its different.  Hard to explain.

Low thyroid (keeps dipping) 

-Yes.  Just changed medication.  Hoping this will help balance things.

Low cortisol (keeps dipping) 

-Yes.  I was at 8 for cortisol when I should have been around 18.  Total bummer, but healing will come with time.

Increased bruising, possibly due to clumsiness 

- No

Eyes feel heavy, have to close them sometimes 

-Yes

Highly light sensitive 

-Yes

Thought I needed glasses, vision is blurred at times but vision screening is normal 

-Yes when I am tired and I feel that eye pain/pressure

Dairy intolerance (one week of deep stabbing pain in intestines if ingested) 

-Still dairy free

Low blood sugar (blood tested at 51 mg/dl in 2014 and 78 mg/dl in 2016) 

-Yes, still struggle with hypoglycemia

Occasional brief confusion while driving (forget where I am supposed to be headed next) 

-No!  Totally am rocking driving.  

Can’t make fast decisions, have to work hard to “think” 

- Has totally cleared.  Sometimes I still need quiet to think when life gets too loud.  But I don't feel mentally incapacitated anymore.

Loud noises make me angry and anxious- like everything in me is on high alert 

-I can filter out noise now.  It is not a hindrance to me in conversation (such a blessing.) Not that I like life loud or crazy right now...

Problems with face recognition after meeting new people 

- I can still have a hard time placing people and I feel like there is a segment of my life that might always remain like a murky dream.

Can’t hold conversation: processing information and talking especially at a fast pace confuses me…this makes me a bit socially awkward (LOL) 

-Socially awkard?! Ask someone else.  (Can social normal-ness actually be judged by one's own self? LOL) But I don't need to take time to process anymore.  All my cylinders are firing, finally!

Have episodes of feeling that I might lose consciousness 

- This one makes me sad remembering how desperate I was.  NO MORE.

Very low vitamin D levels 

- Yes.

Very Low iron levels (iron infusions were recommended) 

- Level climbed but still very low.

Various UTI infections (previously have never had any) 

-Nope

Kidney pain, consistent even after we confirmed that there is no infection 

-Sometimes, only on my right side in my back.  

Body pain upon standing after sitting on floor or criss-cross style, I limp until my joints get moving again 

- No :-) My knees are still sensitive but 85% better than what they were.  Life is soooo much more comfortable!

Sometimes with loud noise/chaos coming at me I have to cover my ears and close my eyes- feel crazy 

- Loud crazy for long periods of time make me exhausted but I don't feel crazy anymore.  (I am laughing at myself, but it was seriously bad.  How did my children handle me?!)

At times I am unable to verbalize simple things.  Words get caught as I can’t dredge up what to call “that thing in your hand…(a cup)” as I am trying to instruct my children
- I. Can. Speak. 

Greater difficulty at math…scratch that- impossibility. Haha. 

- Hmmmm :-)  I would attempt it now.

Bouts of anger that I later feel was a complete over-reaction 

- My husband has coined this term "I.A."  It's short for "irrational anger."  To be fair, I should let him answer this question...but I will say the desperate anger is not in my heart.  Except for certain days....LOL.  But actually, in all honestly, my children have noticed and told me that I am much more peaceful.  I don't know where the anger came from, other than my lack of self control in a world that I felt was completely out of control.  I look back and remember that the anger came when I felt total panic.  I was hanging onto a shred of functioning, and anything that rocked the boat too much sent me into a tailspin.  Like too many dishes in the sink...I knew that it would take a full day to get it done with my drops of energy allotted.  I had to be very careful about what I committed to and basically became a different person, not my capable self.  So much of what I loved in life had been taken away by a monster called TIRED, more scary than any tired I had ever felt before. I felt like I was constantly letting everyone down.  I had so much frustration and fear locked inside.  I never want to go back.  (But if the Lord did take me back, I would leave those dishes in the sink and choose relationship.  This has always been my struggle...hanging onto what matters rather than what I feel helps me in my orchestrated saga - something I try to manufacture (organization) to bring me a peace that only my Savior can give.  Even now, I am working hard to focus on things that matter.  I can easily only grasp for what meets the eye.)

My words don’t always match what I am trying to say, like it’s a bit disconnected 

- Yes still at times when I am distracted.  Not in typical conversation anymore (that I am aware of, LOL)

Also sometimes feel disconnected from reality- recalling memories feels like recalling a dream 

- I have described this to people and still feel awkward trying to explain it.  It's actually called disassociation and it's common with Lyme Disease once it's crossed the blood brain barrier.  I am happy to say that I feel fully in reality, no longer like a fragment of myself!

Head-ache’s that feel like sinus pressure 

- Yes, still with certain exposures (like I listed above, mold, wood smoke and some chemicals.)

Twitching, ranging from minor muscle spasms (I can see my muscles twitch in my leg) to convulsive movements that move my whole core/legs/arms mimicking a small seizure but I am coherent the entire time…this is a more recent symptom 

- NONE!

Emotionally usually either “low” or “numb” 

- I am still processing this hard season, but I feel higher than "low" and not so numb anymore.  Not sure how to answer this one, but definitely SO MUCH BETTER.

Swollen glands by thyroid, swallowing is strained (two year symptom, sometimes worse or better) 

- Yes.  Still hard to swallow.  Still swollen.  My thyroid is low again, and my doctor feels that this will get better with updated medication dose.  

Sore throat often, often have to clear throat 

- Yes on clearing throat. 

Decreased hearing ability, fluid in ear drums 

- Still feel congested at times.  

Overall, looking back on this list, I feel so thankful.  Even if we get a blood test back that is not great news, I feel like so much of life has been given back.  If even for this much relief, I would do this treatment over again.  It is natural, it raises your bodies natural immunity and it worked for us!  I will be very transparent in the coming weeks regarding my lab results and my children's so that the results will be in black and white.  Regardless, I feel that it has been such a blessing.

We will be taking two weeks off, doing nothing except rest and multi-vitamins.  This insures the most accurate testing because of the lab we are going with (information will be detailed in a future post).

Whatever our lab results may be- to God be the glory!

Last day of treatment.  I had many precious souls join me on our last infusion day.  Pictured here is my sister, Becky.
Sis, I love being your sister and I love you.  

treatment: week twelve

We keep plugging along through treatment...there have been high's and lows and the better we feel the less I want to spend time logging information in our treatment journal.  That's good I think!  There is not much new to report this week, just another update on our continued protocol.  I am skipping week 11 update altogether- it's pretty much the same as what you will find in week 12.  We are ready to be done, but faithfully plodding along...until we can verify that this has killed spirochetes.  (See below on how we plan to do that with lab testing.)

day one
ozone and bionic day, one hour in hyperbaric chamber.

day two
IV day... 15 grams vitamin C (plus other nutrients)

day three
God has been so present this week in so many small and big ways.  One of my boys was having issues with treatment that was making my mommy heart ache for him.  Many prayers went up both in our family, and from friends.  On this morning, the Lord answered.  There is a big heart drawn in our treatment journal this day.  I didn't log many symptoms this week because my mind was busy controlling chaos, lol.

day four
ozone and Bionic therapy, along with one hour in hyperbaric chamber.

day five
IV day...20 grams vitamin C (plus other nutrients)

day six
This is one of our free days in the week...no treatment!

day seven
Another day off treatment...we had a long week and ended it with a long day but all in all, doing well.

I have very few symptoms but still notice very slight knee pain on some days.  It is hard to know what is symptoms from Lyme remnants verses fatigue from adrenals that still need to heal. I do see huge improvement in my family, but it is too early to say if this treatment will be something that kills the Lyme off completely.

On that note, right now we are researching labs in Europe to see if we can send off our samples and get a more accurate reading than what is offered here in the states.  IGeneX is excellent to use as a means for diagnosis of Lyme disease, due to their highly sensitive specialized testing.  But, if you are looking to see if you are recovering from Lyme, IGeneX is not the best way to do so because it will actually show a rise in antibodies after fighting off Lyme (whether Lyme is just in remission or, as doctors in Germany have found, Lyme is completely eradicated from the body).  This means that even if there are no more spirochetes in your blood, you will get a full blown postive result on your test!  This is because your body has had a huge rise in spirochete specific antibodies...showing you have had a reaction to spirochete presence.

IGeneX tests for an anti-body response to spirochete's; labs in Europe offer a darkfield blood microscopy. 

The FDA does not approve of darkfield microscopy for blood analysis or diagnosis.

***NOTE: Since publishing this post, a friend and fellow lymie shared with me this link to a lab in the United States that performs this service.  Check out Fry Laboratories, L.L.C. here.

 Here is a picture of what a darkfield test might show if your blood is riddled with spirochetes.

Spirochetes are a corkscrew shape bacteria that burrow into cells, tissue and
even the brain tissue once it crosses the blood-brain barrier

This shows Lyme in cyst form.  Lyme can also hide in biofilm that protects the bacteria
from attack...antibiotics can't touch it.  That's why LLMD's talk a lot about cyst
and bio-film busting methods to treat Lyme.  It's a tricky disease to fight.

Below is a good explanation taken from online translation via a German lab...

" Borrelia are spiral-shaped bacteria (spirochetes) that move around their own axis. After infection, they enter the cells within about 6-48 hours.

There are different strains: borrelia burgdorferi sensu stricto (arthritis), B. afzelii (acrodermatitis), B. garinii (neuroborreliosis), B. spielmanii, etc. The transmission is by tick ticks, but is also possible by other insects.

The classic borreliosis runs in 3 stages of disease:

• Acute infection redness, erythema migrans (about 40-50%), flu-like symptoms
• Stage II after weeks Arthralgia, meningitis, myocarditis, neurological symptoms (paresis)
• Stage III polyarthritis, encephalomyelitis (neuroborreliosis), lymph node swelling

Frequently, however, many different, partly very nonspecific symptoms are present.

Although the disease has been increasingly researched in recent years, many questions are open, which makes diagnostics (and therapy) more difficult. In addition, the possible lab tests are only positive in about 60% (AK, Elisa) and about 80-90% (LTT). In addition, the serologic blood tests do not show the pathogens themselves, but only the response of the immune system. This can only react inadequately if the pathogens "hide" in the cells or the immune system is already weakened by other things (herd, heavy metal loads, cortisone, etc.).

In the dark field microscopy on the other hand are living spirochetes can be clearly seen. Therefore, the method was used earlier to study spirochetes, leptospires, and treponemes as the method of choice. Due to their intracellular occurrence, they are not recognizable in the case of chronic borreliosis patients in the freshly taken blood, but appear only after a few hours (by the disintegration of the blood). They are easily recognizable by their shape and the typical rapid, serpentine movement. In part, one can also directly observe the passage through the erythrocyte membrane."