The Lyme Labyrinth: a Crushed Spirit Before a Faithful God

"The Lord is near the brokenhearted and saves the crushed in spirit."  Psalm 34:18  

Ten years ago, I would never have thought much about Lyme disease.  My mother-in-law and a few family members were infected with it at one time or the other, but they recovered with antibiotics and moved on.  After experiencing Lyme disease first-hand, that all changed.  Over the past four years, I have written several articles to raise awareness about Lyme disease.  This blog is not intended to be specifically about Lyme disease; however, I have prayerfully considered what I believe God is leading me to write about, and this seems to be where I come back to.  In the story of my Lyme labyrinth, I would like to walk people through the raw pain amidst the battle of treating Lyme disease.  I am not looking for sympathy; however, I am offering validation to those who are suffering with Lyme disease.  People need to know they are not alone, and they need their experiences to be validated by sharing a common ground.  This is for all the courageous Lyme warriors out there and their family members and friends who are fighting alongside them.

INTO THE LABYRINTH

It was a beautiful day in early October.  Fresh air was pouring in through an open window decorated with bright fall mums.  While on the phone with my mom, I noticed a sharp irritating pain on my left foot.  There was an angry red mark on top of my foot that itched like crazy.  I discovered something about the size of a freckle attached to the irritated spot on my foot, and I pulled off the tiniest tick I had ever seen--a deer tick.  My heart skipped for a moment, and I told myself not to worry about the tick bite.  I had just finished treatments a few months ago from a reinfection of Lyme.  The healing process was difficult, but I rallied through.  I also had a horrific battle with Lyme disease in 2011 and never fully recovered, since we had determined that I had undiagnosed Lyme for at least two years.  On that October day, I knew my body was still vulnerable and that a third infection would likely agitate my already compromised nervous system, but anxiety and fear would only make the situation worse.  

My previous symptoms of joint pain and impaired mobility resurfaced so I contacted my practitioner to start up treatments again.  I thought that recovery would be fairly short since we started the treatments right away.  I didn't worry much about it or stay on top of it.  Unfortunately, the treatments did not get it all.  A few weeks later, I was feverish and weak.  When I spoke to my practitioner's office on the phone, they told me they believed I had a more serious case of Lyme this time.  I sat on the side of my bed and sobbed.  I didn't have time for this.  I had a family and a husband who needed me to be well.  My 40th birthday was coming up, and we were planning a trip to see my relatives from Kansas.  I needed to see my parents.  I just didn't want to deal with this all over again!  Realizing I had no choice and knowing what was likely ahead of me, I picked myself up and moved forward. I would just have to take it a day at a time.  

HERXING HORRORS

Many Lyme warriors report that the side effects of treating Lyme can be as painful if not worse than having Lyme itself.  This is because of a reaction called Jarisch-Hersheimer or herxing that occurs when the spiral shaped bacteria known as a spirochete die off and flood the body with toxic substances.  When detoxing certain substances and fighting other infections/diseases, we can also experience herxing or a "healing crisis" which cause temporary unpleasant and upsetting symptoms.  I think herxing from the Lyme spirochetes is much worse and scarier than other detoxes.  Hersheimer reactions can affect everyone differently as well as cycle through the course of treatment and recovery period.  Those of us with compromised immune systems and who are genetically predisposed to impaired detoxification pathways can have more significant herxing reactions.  

For me, herxing manifested in various stages and symptoms that rotated in duration and severity.  My herxing symptoms included both nerve and joint pain, weakness, nausea, intestinal pain, vertigo, tachycardia, heart palpitations, blurred vision, brain fog, air hunger, painful tightness in my chest/ribs, involuntary muscle movements/tremors, and numbness.   My herxing also resulted in severe sensitivities to electromagnetic frequencies and external stimuli such as light, visual movement, noise, and smell.  The joint and nerve pain made it difficult for me to bear weight on my legs, and I wore shorts/loose clothing that did not rub against my body or joints.  At times, the herxing caused a diminished sense of balance and my legs didn't seem to want to work correctly with ambulation, resulting in my falling over.  To lighten things up, my daughter and I would joke that I had a few too many "cocktails."  I remember one day I was trying to walk with my walker and lost control of my legs.   My two sons busted out laughing because it looked like my legs were "running" as I fell onto the couch.  These symptoms were typically upsetting and disturbing for my family, and humor made it easier for us all to cope.  

THE DARKEST HOUR

A few weeks into the Lyme herxing battle, I found myself in the darkest hour, engulfed by waves of pain and weakness.  I was mostly bedridden for almost two months.  Some days, I could barely lift up my head because the room would start spinning every time I moved.  When I tried to get up or stand my heart would start palpitating and I would have involuntary movements in my arms and legs. The bed was next to the bathroom which made things easier for me.  When the weakness and shaking was difficult to manage, my husband helped me in and out of the tub.  He arranged for friends from church, neighbors, and members the VFW help with laundry/light housekeeping and fix my lunch while he was at work.  Our three children did what they could to help with meals, laundry, and picking up. I was too weak to walk on my own so I would crawl around the house and lean on a seated walker for support.   I was determined to keep the household going and would have bouts of crying in pain and frustration over my body that seemed to be failing me.  When my husband found me attempting to do dishes and other chores on my hands and knees, he would admonish me for not asking for help.  Then, he would pick me up and carry me back to bed.  Those were heartbreaking times for all of us.

THE CUP OF SUFFERING

" 'Father, if you are willing, remove this cup from me.  Nevertheless, not my will but yours be done.'... and being in an agony, he prayed more earnestly; and his sweat becomes like great drops of blood falling down to the ground."  Luke 22:42,44

Some people say that the number one cause of death in Lyme disease is suicide.  I can't even begin to describe how hard it is to go through the battle of the Lyme labyrinth.  It is by far the most difficult experience I have ever had.  At my most compromised moments, I was completely overwhelmed by neuro-Lyme symptoms and filled with a sense of dread and fear.  There were moments when any light or sensory stimuli would cause involuntary muscle movements and horrible neurological reactions.  Some nights, I would wake up my heart racing, the room spinning, and a sensation that the bedroom walls were closing in on me while my brain was vibrating with spasms.  My body felt like it was constantly vibrating.  Everything around me seemed to be shaking and racing, and I feared losing control of my arms and legs.  I would take slow deep breaths and repeat phrases like "easy now", "slow down", or "Jesus."  I compartmentalized my thoughts from one minute to the next and talked myself into staying calm while working through the disturbing symptoms.  My life was like waking up in a never-ending nightmare, and I felt very alone and detached.  I was fighting to maintain use of my body and brain. I was fighting for my own sanity.   I didn't think I could emotionally handle the pain and neurological symptoms anymore.  I cried out for God to change my circumstances and lift up my suffering.  I could relate to Jesus's prayer at the Garden of Gethsemane when he was begging God to remove the cup of suffering.  I felt a strong sense kinsmanship to Christ in those moments.  

TRUST THE LORD

"Trust him at all times, O people; pour out your heart before him; God is a refuge for us."  Psalm 62:8

I felt completely alone, yet I had God.  No one else had the capacity to enter those dark places with me because they weren't experiencing them.  It felt like my independence was stripped away, so I had to rely on God each and every moment of the day.  Prayer and the Bible was my only weapon that got me through.  I carried around a ring of note cards with verses on them that I would recite whenever symptoms escalated and the sense of dread and fear threatened to engulf me.  When I cried out to God and begged him to do something, His silence seemed to taunt me.  Then, I closed my eyes and two words echoed like a whisper in my heart... "Trust Me."   

Proverbs 3:5 became a mantra for me as it rang through my mind over and over again.  "Lord, I can't do this anymore!"...  "Trust Me"...  "Haven't I suffered enough?"... "Trust Me"...  "I want to be normal again and able to take care of my family."... "Trust Me"...  "I'm begging you, please make it go away!"...  "Trust in the Lord with all your heart, and do not lean on your own understanding.  In all your ways acknowledge him, and he will make straight your paths."  Proverbs 3:5

He remained by my side, patiently directing me and giving me just enough strength to cope with each moment, but no more.  He was a faithful God, and I embraced His grace and held on to His promises for dear life.  I lost all of my own strength, but I gained a supernatural grace that carried me through.  In those painful moments, I lost pieces of myself, but gained a new dimension of a God that brought me to the other side of my labyrinth nightmare.  In the process I had a deeper understanding of His character and ways.  In the end, I was even able to thank Him for allowing me to share in His suffering and the ability to more fully empathize with the pain of others.  Only God has the capacity to turn something so heartbreaking into a blessing.

REBUILDING FROM THE GROUND UP

I recently read an article that described recovery from Lyme to be like rebuilding your body from the ground up.  That is exactly how I felt.  Lyme can infiltrate every system of the body, tearing down the immune system and acting as a conduit for other diseases and conditions to wreak havoc.   I spent hours poring over books on health, nutrition, gut psychology, and functional medicine; and I implemented some changes in my diet and lifestyle as a result.  My practitioner was very involved in my care and his office kept in touch with me weekly, sometimes even two to three times a week.  They were encouraging and let me know they were praying for me.  My practitioner has experienced a sense of heaviness for his patients with impaired health conditions, and spent much of his free time researching treatment options and the latest studies.  I knew he was doing everything he could to assist me in fighting this disease and rebuilding my body.  

My husband and I recognized that we needed to reach out for help, and I am so glad we did.  The first time I had Lyme, I originally thought I was crazy and had no idea what I was dealing with.  This time, I was much more educated and had a much stronger support network.  Our support network was a tremendous blessing for us, especially our friend Ron who frequently stopped by to help out and drop off supplements/treatments, and he offered rides for appointments.  He was very invested in our situation and offered spiritual encouragement and support to our entire family.

RESTORING LOST GROUND

" I will restore to you the years that the swarming locust has eaten..."  Joel 2:25

This battle with Lyme disease was very eye opening for me, as I came to realize that I had given up hope for recovering from my previous health problems.  I felt guilty for wanting to be healed because I thought I was questioning God's sovereignty.  I felt robbed of pieces of my life over the last six or seven years.  Too many times, I have missed out on family events and gatherings, concerts, ballgames, church worship, and doing "normal" everyday things with the people I loved. I didn't realize the depth of my grief until I experienced more loss.   I also discovered a part of me that was still overly focused on what others thought of me.  Almost everyone in my life have been extremely caring and supportive, but the voices of those one or two people who questioned the legitimacy of my situation and how I was handling it seemed to ring louder than the voices of encouragement.  Despite my forgiveness of others who hurt me, I felt weighed down by painful memories and grief.  

My grief and insecurity reached a turning point when our dear family friend, Ron, advised me to "nail it all to the cross."  He explained that Christ died for that and I don't need to dwell on my insecurities anymore.  When the truth of it hit me, I felt a tremendous joy and exhilaration.  I think I knew it all along, but I wasn't set free from my grief until I was torn down once again and lifted up by the hands that were once nailed to a tree.  I could trust in God's sovereignty and will free of the guilt. When I am in the perfect will of God, NOTHING else matters!  God wants me to look up and ahead towards His promises instead of down and backwards to where I've been.  He is by my side, calling me to fight for my health and not give up on gaining ground back in my life.   God has been faithful to me through each hardship, and I am grateful for joyful gifts He delivered out of my crushed spirit. 

"It was good for me that I was afflicted, that I might learn your statutes.  The law of your mouth is better to me than thousands of gold and silver pieces.  Your hands have made and fashioned me; give me understanding that I may learn your commandments.  Those who fear you shall see me and rejoice, because I have hoped in your word.  I know, O Lord, that your rules are righteous, and that in faithfulness you have afflicted me.  Let your steadfast love comfort me according to your promise to your servant.  Let your mercy come to me, that I may live..."  Psalm 119:71-77

RESOURCES

I highly recommend this video that visually demonstrates a heartbreaking yet redeeming battle with Lyme disease:


https://www.youtube.com/watch?v=So2K68r8pOY&feature=youtu.be

*I am not a doctor or an expert on Lyme disease.  The information shared in this article is based solely on personal experience and is not intended for diagnosis or treatment.  For more information about Lyme disease and my experiences with it, you can read other blog articles I have written:

lhttp://dzehm.blogspot.com/2012/11/enduring-winter-my-battle-with-lyme.html

http://dzehm.blogspot.com/2012/12/chronic-lyme-disease.html

http://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering.html

http://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering-2.html

lhttp://dzehm.blogspot.com/2015/07/the-good-fight-my-lyme-relapse.html

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Care in our Culture Part Two: Invisible Illnesses and Holistic Medicine

"Put on as God's chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness and patience."  Colossians 3:12

THE WIDENING GAP

In the fall of 2013, I watched my dear friend and mentor victoriously battle through the end of her cancer journey as she left behind a legacy of faith and courage.  Although there was some controversy with her decision to treat her cancer holistically, neither she nor her family expressed any regret in this decision.  Her desire was to raise awareness about the value in taking care of your body and engaging in a healthy lifestyle.  She was also very passionate about educating people, especially the church, about providing compassion and care for those who struggle with chronic conditions and invisible illnesses.  Around the time of my friend's death, I became increasingly aware of the widening gap in our culture, the medical community, and in the church when it comes to understanding and showing compassion for individuals struggling with these conditions, especially for those who choose to use alternative healthcare.  

Several of my friends and acquaintances who battle invisible illnesses and use alternative healthcare have shared with me their personal struggles of being hurt by criticism and insensitive comments from family, friends, and members of their church.   After spending some time in prayer and having discussions with a few Christian holistic practitioners in my church as well as my friends with chronic/invisible illnesses, I felt compelled to speak up on their behalf.  This led to some enlightening conversations and discussions involving the lead pastor and elders of my church.  They have been very open and understanding in regards to this gap.  I believe that most people have a desire to be of service and support to others; however, they may be unaware of how to help and they lack understanding of the struggles that this vulnerable group faces.  A chronic condition embarks each individual on a very personal journey that can be extremely draining--physically, emotionally, and financially.  In order to foster care and compassion in our culture, it is imperative we understand how the condition affects the individual and their unique experience that has led them to use a specific medication, treatment, or therapy for their condition.

WHAT IS HOLISTIC HEALTHCARE?

Complementary and Alternative medicine, or CAM, is a broad term used to describe a variety of therapies and medical interventions that are available through different types of health care providers.  These providers use alternative approaches to address certain diseases and/or conditions.  Chiropractors, acupuncture therapists, holistic or naturopathic doctors, massage therapists, nutritionists, and Field Control Therapy (FCT) practitioners are some of the more commonly known CAM providers.  CAM focuses on and addresses the whole person, viewing the mind, body, and spirit as interwoven together.  CAM differs from conventional or allopathic medicine.  Each approach to heath care has its place and benefit.     

Why People Choose Holistic Healthcare

●      Some desire a healthier lifestyle and prefer not to take medications or undergo invasive therapies that may expose them to radiation or other harmful substances.  

●      Adequate health insurance coverage has become more difficult to obtain over recent years and medical costs continue to rise.  Supplements and alternative treatments/therapies sometimes are significantly less expensive than the prescriptions, tests, and standard treatments/therapies that conventional healthcare offers. 

●      People often choose CAM because they are struggling with a health issue that conventional medicine has not been able to fully address.  Some have come across medical practitioners who have been unkind to them, blaming the patient or minimizing their situation when conventional medicine failed to appropriately treat their condition. 

●      Holistic practitioners treat the whole person, and they are more likely to provide services and treatments with compassion and greater sensitivity to what the patient is going through.

●      There are countless testimonies of individuals who have successfully treated their illness/condition naturally with nutrition, supplements, and non-invasive therapies.

*There are no guarantees that either conventional or alternative medicine will heal the person.  Only Jesus Christ has the power to heal and restore lives. 

Challenges and Struggles People Face When Using Holistic Healthcare

●      CAM Therapies seek to address imbalances that can lead to a disease or condition.  Often, the longer an individual has had a health challenge, the longer the length of time before the individual sees improvement and/or recovers.  In my situation, it took at least a couple of years of therapies before I saw significant improvements.  Then, when I was reinfected with Lyme disease twice in 2015, I lost a lot of the ground I had gained.  It takes a great deal of patience, faith, and prayer to endure. 

●      CAM therapies may include a process of eliminating harmful substances that can cause some individuals to have temporary unpleasant symptoms in order to detoxify and heal.  I have found that when I am being treated for the root cause of a symptom, that symptom will worsen for a time before it gets better.  That can be somewhat frightening if you do not understand what is happening.

●      Alternative practitioners do not focus on a diagnosis but can often identify factors such as the presence of harmful substances or conditions that appear to be associated with the symptoms being experienced.  This approach to health can be difficult for a patient to explain to others and can make CAM appear less believable when they are unable to do so. 

In my experience, some individuals who use CAM to treat their health conditions can feel isolated and may become withdrawn or depressed.   I believe there are several reasons for this, including the following. 

●      There is a prevailing attitude that Conventional Medicine is superior to CAM.  Conventional Medical professionals may not be aware of the extent of research or level of success CAM has had in helping individuals with their health challenges.

●      Family members and friends may not understand the holistic treatments/therapies the person is utilizing and question the legitimacy of alternative therapies.  They may also minimize the individual’s condition or suggest they see a doctor without taking the time to understand the specific circumstances.

●      There can be a perception in the Christian community that CAM involves New Age, false religions, and deceptive practices.  Well-meaning Christians may verbally reprimand the person, telling them they are deceived and practicing something that is “spiritually wrong.”  

  I have talked to a few Christian alternative healthcare practitioners about this and they all have openly admitted that in this venue of healthcare there are practices and practitioners that utilize New Age and other pagan philosophies that should be avoided.  They have told me there is a line you draw and don’t cross—that is where prayer and discernment must come into play.  On the other hand, God is holistic in nature and He uses many ways to heal and provide healing. I believe there are many legitimate alternative therapies out there that do not cross this line.

*When individuals are both physically and emotionally vulnerable and family/friends as well as those in the church body speak words of judgment and scorn without trying to learn more about the therapies the person is doing and why they have chosen holistic healthcare, those individuals have the potential to shut down emotionally and isolate themselves from others, feeling as though they have to face this journey alone!  We as a church should be aware of this situation so we can Bridge the Gap for them!

A HUMBLE LEGACY- KELLY'S STORY

"My heart and flesh may fail, but God is the strength of my heart and portion forever."  Psalm 73:26

When Kelly Peterson was diagnosed with breast cancer in 2010, she made the informed decision to treat her cancer holistically despite the overwhelming fear, scorn, and opposition from doctors and other people in her life.  She had an incredible support system throughout her cancer journey; however, she also received criticism from those who disagreed with her decision to use alternative healthcare.  She also witnessed the loneliness and isolation of others with similar experiences.  Instead of feeling sorry for herself or holding on to any resentment towards others, Kelly let it go to God and trusted His guidance to use her situation as an opportunity to help others.  Kelly decided to use her insights to take action and instigate change.  In the last 2 years of her life, she took notes for a book she planned to one day write.  Her goal was to guide individuals with family/friends who have cancer or a chronic illness and use alternative therapies to treat their conditions.  She also wanted to educate the church body on how to better assist and care for these individuals.  Although Kelly did not have the opportunity to complete her book, she did put together a list of the insights that she discovered during her journey.  Kelly's family has expressed a strong desire to share these notes with the public in order to raise awareness about individual needs and to improve the quality of life for those facing these struggles.  The following information was derived directly from Kelly's notes and personal observations.  

How to Help and Encourage Someone with an Invisible Illness or Chronic Condition 

• Remember that they are sick and trying to fight a disease/condition, even if they may not LOOK like it.
• It is more beneficial to LISTEN and be there for the person instead of questioning if their illness is real or not, questioning the legitimacy of their treatment/therapy, or offering excessive advice.
• Sympathize and be understanding of where they may be at or may be feeling (mourn with those who mourn).
• While it IS good to ask them how they are doing, don't let that be all you ask them.
• Tenderly, tactfully, and timely speak hope into their hearts and minds.
• Rejoice with them in their small victories.
• Call periodically and ask them how they are doing.
• Pray with them in person and on the phone.
• Send cards with notes and prayers of encouragement.
• Send unexpected flowers to brighten their day.
• Show them genuine interest in their treatments/protocols by listening and asking SPECIFIC questions.
• Offer to do some research online for them.
• When telling someone "let me know if there is any way that I can help", keep in mind that while you may think this is helpful, it is not because #1) It is very hard for anyone to ask for help and #2) They have so much going on they do not have the time or energy to think of ways you can help and sometimes they are just trying to make it through the day.  Instead come up with specific ways in which you can offer to help.
• If you live near the person, ask them, "Would it be helpful if I texted you before I run errands so that I can pick something up for you?"
• If they are housebound, offer to run errands, grocery shop, take their kids shopping, etc.
• Offer to do some chores and clean for them so they can rest, i.e. vacuum, laundry, cook meals, clean bathrooms/kitchen, etc.
• Offer to help "declutter" their homes, work on the computer for them, or assist with other household tasks.
• Offer to take their kids out for the day or weekend-- the situation can be very stressful and upsetting for the children.
• Offer to do seasonal outdoor chores, i.e. plant flowers, weed garden, mow lawn, shovel driveway, rake leaves, wash windows, clean gutters, etc.
• Put together a support team for them.
• Organize a phone chain where people are calling regularly to check on them.
• Coordinate the regular delivery of meals for them and their family (ask about specific diet restrictions).
• Coordinate a schedule of individuals to help with daily chores/house cleaning, rides to appointments, and other needs.
• Assist in putting together a schedule of daily protocols for alternative therapies.
• Get them a massage (great for the lymph system) or offer to take them out to see a comedy show (laughter is good medicine!).
• If you live in the same household, adopt a healthier/similar diet. 
• Help reduce any unnecessary stress in their lives, i.e. relational/family, work-related, household clutter, etc.
• Read some of the books they are reading with them.
• Go to appointments with them and/or drive them there if they are not physically able to drive on their own.

What the Local Church Can Do To Help

• Arrange for elders in the church to pray with them and anoint them with oil.
• Coordinate individuals to call and/or come to their homes to pray with them on a consistent basis.
• Call and check on them regularly.
• Post specific needs on a website or email.
• Coordinate financial assistance, offerings, donations, etc.
• If they are unable to physically leave their homes, offer to bring "church" to them by singing worship songs with them, studying the Bible together, etc., as they may be yearning for the fellowship and spiritual connection that occurs in corporate worship.

How to Assist Individuals Financially

• Coordinate a fundraiser to offset medical costs, treatments, and therapies.
• Ask what therapies they are doing and if you can pick something up or help pay for it.
• Offer to pay for one supplement each month.
• Offer to buy a piece of at-home medical equipment or device/treatment.
• Deliver organic groceries to them.
• Offer to purchase a book they have expressed a desire to read in order to learn more about their disease or condition.

BRIDGING THE GAP AS A CHURCH

"What good is it, my brothers, if someone says he has faith but does not have works?  Can that faith save him?  If a brother or sister is poorly clothed and lacking in daily food, and one of you says to them, 'Go in peace, be warmed, and filled,' without giving them the things needed for the body what good is that?  So also faith by itself, if it does not have works, is dead."  James 2: 14-17.

We as a church have the opportunity to show support, compassion, and minister to individuals in their unique and vulnerable situations, but we can’t do that without understanding their struggles and taking the time to hear them out.  It is crucial that we are made aware of these issues so that we are better equipped to help and come alongside them.  I believe that God can equip us to come together as a people with compassion, love, humility, and forgiveness when necessary.  We just need to open our hearts and our eyes to see where He leads us and the love He provides.  Then, we are able to bridge the Gap!

"Finally, all of you, have unity of mind, sympathy, brotherly love, a tender heart, and a humble mind."  1 Peter 3:8

RESOURCES

To see the first part of this article on Invisible Illnesses/Disabilities:

http://dzehm.blogspot.com/2015/10/care-in-our-culture-part-1-invisible.html

For more information about Kelly's story, alternative healthcare, and how to help individuals with chronic illnesses, you can read these blog posts.

http://dzehm.blogspot.com/2014/05/kellys-hope-womans-life-legacy-and.html

http://dzehm.blogspot.com/2014/06/kellys-hope-part-two-building-on-legacy.html

http://dzehm.blogspot.com/2014/08/kellys-hope-part-three-bridging-gap.html

http://dzehm.blogspot.com/2015/02/the-voices-of-lyme-voice-of-battle.html

http://dzehm.blogspot.com/2013/11/health-wellness-and-beauty-of_4739.html

http://dzehm.blogspot.com/2013/06/embracing-wellness-through-alternative.html

Care in Our Culture Part 1: Invisible Disabilities

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God."  2 Corinthians 1:3-4

THE CALL FOR A VOICE

When I began to struggle with chronic vertigo and physical issues related to Lyme and other infections, my eyes were opened to the meaning of experiencing a "new normal" and modifying daily living with impairments.   After coming to terms with my situation and getting past the initial grieving period, I have been determined to make the best of my situation by raising awareness about Lyme and other chronic health conditions as well as encouraging others who share these struggles.  Over the years, I have observed the physical and emotional pain that individuals battle as they face a culture that has been grossly uninformed about many chronic health impairments; their physical, emotional, and financial impact; and alternative treatment strategies for these conditions.  My blog is a platform to bring the light of hope and encouragement in our suffering as well as informing the public about the dynamics of chronic health struggles.  My voice and mission is to continue to raise awareness, especially in the church, so that we are more equipped to help others-- moving away from a culture of disengagement and unawareness to a Culture of Care and Compassion for those who experience pain and suffering.  In doing so, we will acquire more empathy for individuals who struggle with invisible disabilities or illnesses.

WHAT ARE INVISIBLE DISABILITIES?

Individuals who experience physical, cognitive, and emotional setbacks can experience what is called an "invisible disability" or "invisible illness."  This is considered to be a debilitating condition in which there are no obvious outward indicators of an impairment.   Conditions such as cancer, lupus, fibromyalgia, chronic fatigue syndrome, chronic pain, migraine headaches, vestibular disorders, chronic Lyme, MS, autism spectrum disorders, memory loss, mental health conditions, etc., can cause impairments that challenge daily living yet are not visibly apparent to outsiders.  

LIVING WITH AN INVISIBLE DISABILITY

Today, countless people are suffering silently with physical, cognitive, and emotional impairments, attempting to navigate life the best they know how.  Each individual experience is unique depending on the person's distinct personality and character, the nature of their impairing condition, as well as access to effective treatments.  Invisible disabilities can affect a person's life at multiple levels- financially, physically, emotionally, and socially.   Financial hardships add increased stress for individuals with chronic conditions.  Some are forced to give up their careers/jobs or work at a less physically demanding position that is lower in pay.  Lack of access to healthcare coverage or adequate insurance and decrease in income will lead to the inability to receive adequate services and healthcare to treat the condition.  Some conditions such as, chronic Lyme, have recommended long-term treatment strategies that are not covered by health insurance and can cost several thousands of dollars to treat.

There are also social and emotional struggles involving chronic conditions.  Weakness and pain as well as neurological difficulties can bring a person to the point where their greatest aspiration is just getting through the day.  It is overwhelming to manage appointments, medications, specialized treatments/remedies, therapies, diet changes, and other doctor/practitioner recommendations. Emotional responses such as depression, anxiety, and mood swings are common in dealing with these frustrations.  When an individual battles with an impairing condition, their social life may falter and they can easily isolate themselves.  Some call the impairment their "secret identity" or their "double life."

Chronic conditions and invisible impairments bring out the strength and courage of these unlikely heroes.  There are two kinds of courage in dealing with the physical and emotional struggles.    There is incomprehensible strength in bravely pushing through the pain and bearing with it; however, I have witnessed a new dimension to courage when that person openly admits their need for help.  For a long time, I felt ashamed of my own impairments, trying the best I could to hide it.  For at least a year, I was able to hide my balance disorder and mobility impairment by using my son's stroller and other strategic approaches for mobility; however, I eventually needed to use devices to get around.  Then, I had to work up the courage to get out of the house and use these devices in public.  Sometimes I have noticed the stares and the discomfort of others when I am at church and other public places.   Although I do struggle with the social awkwardness of these situations, I honestly don't spend too much time worrying about what others think.  I need to focus my time and energy managing my day, keeping up with my treatments/supplements, taking care of my family, and finding creative ways to make life work for us despite my impairments.

BUT YOU DON'T LOOK SICK!

In my support network with individuals who have chronic conditions, the number one complaint I hear is when people tell them they look great or they do not appear sick.  They often will perceive that the person does not believe them or is minimizing their pain. When people tell me how great I look, I try to take it as a compliment.  I usually smile and say thank you, or I might add "I wish I felt as good as I looked."  

Other individuals in my support network have shared frustrations in how to respond to rude and insensitive comments from individuals who do not seem to believe they have an impairment.  For example, individuals with invisible impairments are often criticized and accused of being lazy or deceptive if they use a handicapped parking spot.  They may ask a spouse or someone else go to the store for them in order to avoid the scorn and anger of uninformed members of the community.  My dear friend was recently hurt by insensitive comments made from someone in a group discussion because she mentioned that she sometimes drives her son to school although they live nearby.  Though the woman was aware that she had physical challenges, she was alluding to the mom's laziness in driving her son to school obviously unaware that her hip locks up if she walks too far and then she is unable to walk for days at a time.

Individuals with chronic conditions will also struggle with how to respond to questions about how they are feeling.  They will often give a dishonest answer because they may question the person's sincerity, they may see their pain and impairment as a sign of weakness, or they may not want to talk about it.   Just because someone is struggling with how to communicate about their impairment does not mean you shouldn't ask them questions or show that you care.  It is refreshing for them to see your sincere demonstration of kindness and consideration.  I bring up these issues, not because you should worry about what to say to someone with health impairments, but to offer insight into their lives.  We are more equipped to show respect and compassion to others when we are aware of what is not visible to the eye.

WHY DON'T I GET BETTER?

When you come down with a cold or a virus, you may feel rotten for a few days or even a week.  You may go to the doctor for a prescription or take something to ease your symptoms until the virus takes its course, and then you move on.  When you struggle with a chronic condition, it is like being stuck in that place of feeling miserable for months and sometimes years at a time.  Your doctor may not know what exactly is causing your symptoms. Your specific condition may not have a cure or effective treatment.  Other people may not understand why you can't take a pill or something to get better because they are uninformed of the nature of your specific condition.  This is very frustrating for individuals, their families, and the medical practitioners attempting to treat their symptoms. 

Individuals with invisible conditions will sometimes choose to try diet and other lifestyle changes as well as alternative therapies to manage the disease, illness, or condition.  There can be moderate to high success in using various treatment approaches and lifestyle changes, but this is not always the case.  Although the disease may be more manageable with multiple therapies and dietary changes, sometimes the individual with an invisible illness or impairment may be facing the fact that they will not get better or fully heal from their condition.  

COPING WITH IMPAIRMENTS


When you have a debilitating condition or impairment, it turns your life upside down.  There is a grieving process that is similar to when someone dies and you lose a loved one.  You see everyone else moving on with their lives, and you feel left in the dust, alone, and discouraged.  You may find yourself stuck in a place where you aren't even sure if you can make it through the day.  You may believe that you are a failure because you can't seem to move forward with your condition.  These are all very normal feelings and a part of the process of grief and coping with your impairment.

I have found several strategies that have helped me to process through my grief and cope with my situation.  My most important strategy is to try to not worry about the future so I can focus on each moment or day at a time.  I find a personal relationship with God to be very important for me, using Bible study, devotions, and moment to moment prayers to help me get through each day.  I also make it a point to forgive those who have hurt me, and I give unpleasant social interactions up to God.  It seems the more I keep myself busy and the more time I spend with God, the less I fret or worry about my situation and what others think of me.  Most importantly, I am intentional in having gratitude by making daily lists of what I am thankful for.  I celebrate small victories like having the energy to clean or work out in the yard, being able to cook without feeling like I'm falling, and enjoying a family meal at the table without dizziness or nausea.  I am thrilled when I can get to church, go to a movie with my husband, or take a family vacation.  These are huge victories for us!  When I have a crummy day, I have a good cry and talk it over with God.  We all have hard days.  It's OK to be angry, to cry, and to grieve.  God understands more than anyone.  He loves all of His children so much He was willing to be tortured and experience an excruciatingly painful death in order to empathize our struggles and provide us with the free gift of eternity.  When we allow Him to carry our burdens, we will embrace the lightness of His grace and His mercies.  These truths offer us a new kind of hope.

A CULTURE OF CARE

"Let us not grow weary of doing good, for in due season we will reap, if we do not give up.  So then, as we have opportunity, let us do good to everyone, and especially to those who are in the household of faith."  Galatians 6:9-10

I yearn to be well again so that I can more fully enjoy my family and be of service to others.  Despite my personal challenges, I take the time to be thankful for these impairments because I am able to more fully understand the grief and pain of others who are walking similar paths. I find it rewarding to share their burdens and walk with them.  I have opportunities to share pieces of my story and what God has shown me in my journey to help others take steps of faith and empowerment.

You may have never experienced going through a chronic condition or having an invisible illness/disability.   It might be more challenging to have empathy for others in this situation.  I realize that it can be very hard to understand unless you've been through it yourself or with a loved one, but there are ways you can help.  Small things like making a phone call or sending a card in the mail to show them you care will make a difference.   If you want to uplift someone who is struggling, take the time to pray with them over the phone or in person.  You can also help out by offering to come over for a couple hours and clean/do their laundry, pick something up for them at the store, or take their kids out for an afternoon of fun.  I hope and pray that more people will take time to learn about the pain and struggles of others so that they can have compassion and empathy for them.  As a church, my prayer is for us to move away from the increasing disengaging and self-absorbed nature of our society and move towards showing love and compassion for each other.  This is the example Christ set for us, and we all need a reminder once in a while.  God knows our hearts and our intentions, and He will reward us for our efforts as we engage in a Culture of Care.


"The Spirit of the Lord God is upon me, because the Lord has anointed me to bring good news to the afflicted; He has sent me to bind up the brokenhearted, to proclaim the favorable year of the Lord, and the day of vengeance to our God; to comfort all who mourn, to grant those who mourn in Zion, giving them a garland instead of ashes, the oil of gladness instead of mourning, the mantle of praise instead of a spirit of fainting.  So they will be called oaks of righteousness, the planting of the Lord, that He may be glorified."  Isaiah 61:1-3

Resources

For more information about Invisible disabilities/illnesses, and how to help others, you can read these articles and blogs:

http://restministries.com/about/illness-faq/

http://themighty.com/2015/08/why-i-lived-a-double-life-while-dealing-with-my-chronic-illnesses/

http://jessicaframedup.com/secret-life-lyme-disease/

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

http://dzehm.blogspot.com/2014/08/kellys-hope-part-three-bridging-gap.html

The Good Fight: My Lyme Relapse

THE GOOD FIGHT

Lyme is one of the most controversial diseases of our time.  Some say that when you become infected with Lyme, you will always carry the disease.  Others say that once Lyme passes the blood brain barrier and overtakes your body, there is no cure to treat it.  Many deny that Lyme is a serious health condition or a chronic disease.  There seems to be a multitude of opinions and perceptions of how you get the disease, how the disease manifests itself, and how it should be treated.   Lyme is more than a news story or a statistic. I have personally encountered numerous testimonials of individuals who demonstrate courage as they put up the "good fight" in battling this debilitating disease.  When I engage in the experiences of Lyme sufferers in my Lyme support group, I am sometimes disheartened by their struggles as well as encouraged by their small victories.  Many share stories of sorrow and loss mingled with beauty and hope.  A teenage girl describes what it is like to be completely bedridden with a feeding tube, debilitated by late-stage Lyme. A former marathon runner shares with me how she can't get used to depending on her husband to take care of her and their children.  A young mom suffers from depression after being forced to give up her successful career because her body is wracked with pain and weakness.  She expresses how God has blessed her with the opportunity to serve her family from bed. These stories have touched my heart and have inspired me to keep speaking up about the disease.

My own story of the "good fight" involves years of compounding health struggles related to cervical/head trauma as well as battling Lyme and other chronic infections.    I was originally diagnosed with Lyme disease in 2011.  At that time, we suspected I had carried the disease for at least 2 years.  Although I have been yet to fully recover, I have made steady improvements by treating various pathogens and infections with alternative therapies.   Unfortunately, I experienced my greatest setback this summer when I was re-infected with Lyme and had a relapse of the disease.



THE STORY OF MY LYME RELAPSE

Early June, I discovered a tick embedded in my right foot. The night before, my husband came home from working in a wooded area and he suspected that the tick had been on his clothing. After removing the tick, I immediately contacted my practitioner as I wanted to be proactive about any possible infections.  Three days later, a small ring formed on my foot.  The infected area was very painful, and I was unable to wear shoes at the time.  Severe pain spread up my right leg limiting my ability to bear weight and impairing my mobility.  My practitioner had just implemented treatments for Lyme and other co-infections.  By the end of the week, I began to experience piercing pain and intermittent numbness in my extremities.  In an attempt to walk out to the end of the driveway to get the mail, I suddenly was overwhelmed with weakness and my legs gave out.  Then, my legs went numb and I ended up having to scoot back to the house unsure if I would make it across my driveway.  Soon after that, I began to lose the ability to walk on my own.  Determined to maintain my mobility, I used a seated wheeled walker to get around.  Sometimes, I sat on it like a wheelchair and scooted around the house.  Other times, I leaned against it, my legs clumsily dragging behind me as I moved about.  I also experienced muscle tremors, increased difficulty focusing, facial numbness, periodic slurred speech, and momentary challenges with speaking.  My practitioner told me I was herxing (a reaction to the dead bacteria overloading my system) and stopped treatments a couple of times to treat me for neurological issues from the herxing.  I was shocked at how fast things went downhill and questioned if the rapid progression of symptoms was because I had previously been infected with the disease.  I reassured myself that these symptoms were normal and would get better with treatment.  It was extremely difficult for my husband and children to see me in pain and struggle so much with walking. For me, the relapse brought back vivid memories of the first time I was treated for Lyme; however, God revealed to me how much I have changed since then, and these experiences with Lyme engaged me on a Spiritual Journey.  My journey has been one of despair balanced with faith and hope.

MY SPIRITUAL JOURNEY WITH LYME

My journey with chronic disease and Lyme involves so much more than symptoms and health struggles.  These experiences have strengthened my faith and marriage, and they have taught my children to be more compassionate towards others. This Spiritual Journey has engaged me in the "good fight"-- the transforming power of sanctification as the Lord works through my weakness and despair.  This is how God is transforming my life and my family through our experiences with Lyme.

Something Worth Fighting For

"For the Lord your God is he who goes with you to fight for you against your enemies, to give you victory."  Deuteronomy 20:4

The journey began four and a half years ago when I found myself in a place without hope.  I was semi-bedridden with Lyme for about six weeks and completely gave in to the disease, honestly believing that I wouldn't make it.  God allowed me to come to a place at the end of my rope and then He lifted me up.  He showed me His vast immeasurable love for me by carrying me through those dark times.  Now, I refuse to let the disease win or take me back to that place of hopelessness.  I am ready to fight for my family.  I look at the beautiful faces of my three children and know they are worth the fight.  I am moved by the deep compassion of my husband whose loving arms lift me up and carry me when I am too weak to walk, and I yearn to be well for him.  God understands my weakness as I struggle with the strength to get up and fight.  He knows that I have something worth fighting for and I'm not going to give up.  I will serve my family, and I will have a reason to try, even when the fight leaves me and weakness takes over.  God carries me with His love, and He fights for me when I can't do it on my own.
 
The Thief

"The thief comes to steal and kill and destroy.  I came that they may have life and have it abundantly."  John 10:10

Lyme is a thief that robs people of their functioning and the normal everyday activities we take for granted.  When I first discovered I had Lyme in 2011, my grief emerged from a place of fear of the unknown--a lonely voice in the wilderness crying out to God.  My groans were desperate pleas for healing. Over time, I began to cope with my grief and find joy despite the daily struggles.  I adapted to the "new normal" of daily living with impairments.  This has all changed with my Lyme relapse.   I now discover another dynamic of grief in realizing how much I had previously gained back from my first encounter with Lyme and am losing all over again.  This grief is intermingled with acceptance of my situation yet hurting for my children and their loss of a healthy mom.  As my oldest son cries on my shoulder because I am too weak to make it to his baseball games,  I see his young heart battling with worry and my own heart weeps for his sorrow.  I know I must face the thief head on and process through my grief. The thief comes to kill and to destroy, but the thief loses because there is something greater and better in store for us.

A Disease does not Define Me

Chronic disease seems to be overtaking my life with weakness, pain, vertigo, and sensory issues that consume everyday activities.  It is always there in the background, and it wants to define me.   If I'm not careful, I can allow it to do just that.  Instead, I choose to focus on God and His beauty in my life.  I search for gratitude, and I refuse to be defined by a disease or a condition.  Some days I don't want to be thankful but I keep pressing forward in my faith and trust God's plan for my pain.  Instead of living by my impairment, I live for the grace of God who meets me in each momentary struggle.

Not Flesh and Blood

For the weapons of our warfare are not of flesh but have the divine power to destroy strongholds."  2 Corinthians 10:4

The battle is real, and the battle is hard.  It is not a battle of flesh and blood but a battle of the mind.  As my strength weakens, the thought of praying and reading my Bible seems daunting. Some dear sisters from church pick me up to take me to an oasis of peace for the day.  They feed me with food, love, and prayer.  I tell them that I can feel the enemy pressing against me yet I don't have the strength to fight back.  They remind me of just three words to pray when I feel overtaken, "Jesus help me."  I know that God will intercede for me when I can't do it on my own. I don't need elaborate prayers or a Bible study to discover God's love.  I just need God himself.  He is my healer, and I am His child.  He lifts me up and carries me through the mire.  Together, we get through it.

In the Garden

The garden is my refuge of hope and healing.   My family understands my need for restorative time, and they help me outside to our backyard retreat.  I bask in the sun and the comfort of God, slowly gaining my strength back. I spend a little time each day nourishing my plants and pulling weeds, reflecting on how God is doing the same thing for me--pulling the weeds of busyness, worry, and stress out of my life.  He takes the garbage out and replaces it with Himself. In the garden, I am nourished by God's grace.  I feel loved and whole as I embark the path of recovery in His presence.  After six weeks of struggles in the "good fight", I have finally made it back to my physical baseline prior to the Lyme relapse and I thank God for His healing power in my life.

SPIRITUAL BLESSINGS FROM MY JOURNEY

"But we have these treasures in jars of clay, to show the surpassing power belongs to God and not to us."  2 Corinthians 4:7

 When I stop to think about it, I have been blessed in numerous ways through this journey. I have been blessed with a thorough and compassionate primary physician as well as other incredible practitioners who have been very committed to helping me find health and healing.  God has also blessed me with a wonderful support network of family and friends who continue to stand by me.  I also am thankful for the people I have met in the Lyme community who have also joined the "good fight."  I pray for them and their opportunity to find faith, hope, and blessings in the battle as well as complete healing.   I believe that pain, weakness, sorrow, and grief are just momentary afflictions that can't compare to the future glory to come.  Ultimately, God wins.  I read the book and I know how it ends so I really do not need to fear the future.  God has His hold on me, and He won't let me go. I continue with the "good fight" knowing that the future reward will be worth it!


"I have fought the good fight, I have finished the race, I have kept the faith."  2 Timothy 4:7



RESOURCES

The information in this article is based on my personal experience with Lyme as well as discussions and interviews with others who have battled the disease.  For more information about Lyme and my experiences with the disease, you can read other blog articles I have written.

http://dzehm.blogspot.com/2012/12/chronic-lyme-disease.html

http://dzehm.blogspot.com/2012/11/enduring-winter-my-battle-with-lyme.html

http://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering.html

http://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering-2.html

http://dzehm.blogspot.com/2014/10/the-voices-of-lyme-voice-of-hope-nancys.html

http://dzehm.blogspot.com/2014/12/the-voices-of-lyme-voice-of-youth.html

http://dzehm.blogspot.com/2015/02/the-voices-of-lyme-voice-of-battle.html