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

(the voices of lyme) The voice of Suffering 2: Coping with Neurological Lyme

"So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing us for an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal."  2 Corinthians 4:16-17

COPING WITH NEUROLOGICAL LYME

Chronic neurological Lyme is a debilitating and overwhelming disease to cope with because it affects every part of your life.  I believe that it is essential to educate yourself about what you are dealing with and come up with strategies to manage the disease to the best of your ability.  Everyone has different ways of coping with their circumstances. I came up with a list of suggestions that have helped me to cope with my own daily struggles.


Build a Support Network

If you have or suspect you have Lyme disease, first of all, I want to tell you that you are NOT crazy and it is NOT in your head.  Do not let anyone tell you otherwise.  If your doctor doesn't believe you, refuses to consider the possibilities, or tells you your condition is not real, look at finding a different practitioner.  Ask around and find someone who is compassionate and is willing to really listen to what you are saying.  Never give up finding the treatment strategy that works for you.  There are several options available for conventional, alternative, and combined therapies.

Secondly, know that you are not alone. Although you may not find tangible access to support groups and resources for people with chronic Lyme, there is support out there.  You could start by contacting a local Lyme organization to get more information or seek out online groups for support.   With online resources and social media, we have easier access to finding people who share our experiences with chronic disease.  It has been very important for me to build a support network of people who accept me and share similar struggles so that we can support each other through the hard times and rejoice together with our triumphs.  Having someone to lean on and walk this journey with you makes a huge difference.   Additionally, do not be afraid to ask for help.  If you attend or belong to a church, it is a great place to receive support and assistance when you need it.  Something as simple as a phone call, prayer support, or a meal can lift the burden on your heart when you realize that someone cares about you.  I am very thankful and blessed for the support of the body of Christ who has come alongside me and my family through the years.

Plan Ahead

When you are struggling with chronic conditions such as Lyme, you may be overwhelmed by the pain, weakness, and neurological problems that have disrupted your daily life.  Medications, supplements, and other therapies can take up a lot of your time and be overwhelming as well.  Your stress level escalates when you are just trying to make it through the day.

Having a consistent daily routine and planning ahead will reduce the stress in your daily life and keep you occupied so that you aren't overly focused on your situation.  Start out by making small goals for each day.  If you are having difficulty keeping up with housework and daily tasks, talk it over with your family to come up with a plan.  Those who are married and have children can ask their spouse to help come up with a chore plan or list for everyone to contribute to keeping up on basic household duties.  I find making "to do" lists and designating certain days for specific tasks helps me to stay on top of my housework.  I will sometimes make lists for my kids so that they know what is expected of them and they can help out with chores.

If you are taking a lot of medications, supplements, or doing several therapies you can make out a schedule and use pill boxes to keep everything straight.  Planning ahead is also excellent way ease the stress when traveling, celebrating holidays, and going on outings.   In these situations, you can put together a list of what you will need to cope with your situation while away from home, figure out what medications or treatments you will need to take with you, and prepare foods in advance for your specialized diet.  Planning ahead will make things run smoother when you are at home and out in public.

Write it Down

Keeping a journal is a great way to express your feelings and cope with your daily struggles.  When you chronicle your journey and what lessons you have learned from your suffering, you will look back and realize how far you have come.  I find that by using a journal and writing things down, I feel a release in my spirit and it helps me to get through the day. I also make it a daily habit to focus on the positive aspects of my life by listing what I am thankful for.  No matter what obstacles we face, there is always something we can be thankful for.  An attitude of gratitude is not always easy but it helps us to refocus our minds on momentary joys.

Dietary and Environmental Changes

Changing your diet and the environment around you can help improve the inflammation in your body and reduce some of the symptoms/triggers you are experiencing.  You can research recommended dietary strategies on your own or consult with a nutritionist or practitioner that specializes in Lyme.   You may notice that when you change your diet by eliminating certain foods, you will have temporary side effects as your body adjusts to the changes.  Strategies for improving your home environment can include reducing the amount of chemicals you use, eliminating fragrances, reducing EMF (electromagnetic frequency) exposure, changing your household lighting, and removing any potential mold or other possible health hazards.  When you are struggling with conditions such as Lyme and have EMF sensitivity, it is recommended that you remove wireless internet or WiFi from the home and replace it with a computer modem.  If you have no other option, you can shut off the WiFi when you are not using it.  I would especially recommend doing this at night when you are sleeping. Some people unplug their microwave or get rid of it in order to reduce exposure to radiation and EMF's.  We have tried a few recommended strategies to reduce the EMF's in our house.  After discovering our cordless phones were carrying strong frequencies throughout our house, we eliminated them all together.   We replaced our fluorescent lights with traditional bulbs because fluorescent lights are brighter and emit stronger frequencies.  I dim the lights on days when my sensitivity is more prevalent.  Table lamps can be useful in minimizing the brightness in the home environment.

Create a Place of Refuge

It is crucial to have a place of refuge to go to when you are struggling with neurological Lyme and related conditions.  This should be a peaceful place to get away from the noise and chaos so that you can take time to rest and recover.  The place of refuge should be a quiet, safe, and comfortable environment that has appropriate lighting for light sensitivity.

I have two places of refuge at home.  One is my bedroom.   I have it set up a serene environment for relaxation and recovery.  We have removed all electronic devices such as TV's and computers for a more peaceful atmosphere.  I keep our radio/CD player, lamp, and alarm clock away from my side of the bed to reduce frequencies where I rest.  I also use specific devices in my bedroom for EMF sensitivity. My second refuge is outside in the garden.  In the summertime, I try to spend at least an hour a day grounding outdoors.  I do this by removing my shoes when gardening and sitting/laying in my yard.  There is something about the earth's magnetic field that has a healing power on the body and also reduces the harmful effects of EMF's.  I have found natural grounding to be much more effective than any devices.  When you are spending time outside, you have an increased risk of exposure to ticks and disease; however, I am willing to take that risk because of the enjoyment I experience as well as the health benefits of being outside.

Live in the Moment

Chronic and neurological Lyme is a challenging disease to manage.  It is way too overwhelming to think about the future and worry over all the "what if's."  In order to cope with your daily struggles, you must take everything a day and sometimes a moment at a time.  I am very grateful to be on the other side of the most debilitating aspects of battling my condition; however, when I come down with a virus or am doing a specific treatment/detox, some of the old symptoms will come back.  Although I may become upset about temporary setbacks, I take a deep breath and remind myself that I've been through this before and will make it through again.  Then, I rest in the knowledge that God is with me and will take care of me through this difficult moment.  I focus on God's mercies that are new each day and tell myself tomorrow will be different.  If not, God will be by my side to get through the next day as well.

Trust God in the Hard Stuff

"I waited patiently for the Lord to help me, and he turned to me and heard my cry.  He lifted me out of the pit of despair, out of the mud and mire.  He set my feet on solid ground and steadied me as I walked along.  He has given me a new song to sing, a hymn of praise to our God.  Many will see what he has done and be amazed.  They will put their trust in the Lord."  Psalm 40:1-3

When you are facing a seemingly impossible situation where your world crumbles and your body breaks down, you may come to a point where you are at the end of yourself.  You then have the option of falling into the pit of despair or clinging to the one constant in your life, the Rock of Salvation and Hope.  As everything else fades away, God and your faith may be all that is left.  Remember that His love is real, His promises are real, and He will never fail you or forsake you.  You might be angry with God and think to yourself how could a loving God let this happen?  Tell Him how you feel.  Tell Him you are angry, hurt, and in despair.  Tell Him you don't understand why you are suffering.  He already knows how you feel, and He still loves you.  He has been down the road of suffering, pain, and loneliness.  He did it for you.  He knows more than anyone what it is like to suffer the unthinkable and to be alone.  He wants you to dive into His loving arms, cry out to Him, and tell Him you can't do it on your own.  God may seem to be doing things backwards, but he is in the business to lift up the broken and weak so that He can shine in their lives despite their tribulation.  Take a deep breath and jump into the beautifully terrifying sea of faith. The loving arms of a God bigger than all of this will catch you and lift you up.   He is waiting to show you that He loves you no matter what your circumstances are.

The path of physical and emotional healing involves spiritual renewal and forgiveness.  Our mental attitude has a tremendous impact on our physical wellbeing and overall healing.  When we are hurting deeply, it may seem impossible to change our attitude, but with faith and the help of our loving Creator, we can do it.  God can take these ugly circumstances and build something new and painfully beautiful out of it.   You will take a tremendous step in this process by choosing to forgive.  Forgive those who hurt you and those who didn't understand.  Forgive the medical professional that misdiagnosed you and was insensitive to your pain.  Forgive yourself.  Most of all, forgive God for seemingly letting you down and allowing this to happen.  When I decided to choose forgiveness over anger and hurt, it was difficult for me but I gritted my teeth and took a step of faith.  I reached for the miraculous gift, the freedom of forgiveness only found in the grace of God.  I believe that forgiveness in itself has tremendous healing power.  Learn to forgive, to let go, and trust God in the hard stuff.

FINDING HOPE

Although my condition has improved through the years, I had to come to terms with the fact that I may never fully recover this side of heaven.  God only knows what my future holds.  I have found that He has used my circumstances to speak to others, and I will do whatever I can to make the best of all that God has given me.  It is my desire to do His work through my joy and through my suffering.   At the same time, I will never give up hope for full healing and recovery.  If it is God's will, I will just praise Him all the more for restoring my life and healing my body.

Whether you have neurological Lyme, a mysterious condition, or an untreatable illness--no matter how bleak things look or what your circumstances are, don't give up hope.  Hope is what makes each day worth waking up to and each breath worth living for.  Rest in God's love for you.  Trust in His promises and His hope.  He may not give guarantees for what we want but His promises are true, and they are worth clinging to and living for.

"We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us."  Romans 5:3-5

This the 2nd part of an article on Neurological Lyme for my "Voices of Lyme" series.  For more information about Neurological Lyme and its impact, check out my 1st article here:  http://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering.html?spref=fb

RESOURCES

The information in this article is not intended to be expert advice or offer diagnoses/treatment for Lyme disease.  It is based on my personal experience and the experiences of others I know.

For more information about chronic Lyme, my testimony, and the testimony of others, you can read these blog articles:

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

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

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

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

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

Judy's Story:  http://lymedisease.org/news/touchedbylyme/lyme-fog-wall.html

Maggie's Story:  http://www.burlingtoncountytimes.com/life-style/reality/living-with-lyme-disease/article_f7b435cd-8471-51e5-8bf2-27a3da1943ad.html

Celebrity, Yolanda Foster:  http://lymedisease.org/news/touchedbylyme/lyme-fog-wall.html

For more information about help and support for chronic Lyme, visit ILADS website:  

ILAds.org

For more information about Lyme disease and treatment information:

http://articles.mercola.com/sites/articles/archive/2013/09/04/lyme-disease.aspx

This article shares treatment strategies for Lyme as well as information regarding EMF's and the healing process:

http://articles.mercola.com/sites/articles/archive/2012/02/05/dr-dietrich-klinghardt-on-lyme-disease.aspx

This article describes how impairment of methylation, a detoxification pathway, contributes to the recovery of Lyme and other chronic conditions that are difficult to treat:

http://suzycohen.com/articles/methylation-problems/

The movie, Under our Skin, profiles chronic and neurological Lyme.  This documentary has helped to raise awareness about this disease.  Here is the link to watch it online:

http://underourskin.com/film/

http://underourskin.com/sequel/#sequel-home

(the voices of lyme) The voice of Suffering 1: Neurological Lyme

"For I consider the sufferings of the present time are not worth comparing with the glory that is to be revealed to us."  Romans 8:18

THE VOICE OF SUFFERING

It feels like you are entering into a never-ending nightmare as you find yourself in a mental fog and something isn't right with your body.  You try to put on your best smile and tell yourself to just ignore what is happening to you and it will eventually go away.  As time goes by, simple functions such as walking and standing become more difficult.  You try to be casual about leaning against a table or a doorway in an attempt to hide your mysterious impairment.  Your doctor is baffled by your weakness, excruciating pain, and unusual array of neurological symptoms.  Your MRI and other tests are normal, and no one seems to have any definitive answers as to what is causing your diminishing health.  You wonder if you are going crazy.  As this mysterious condition takes hold of your life, your hope fades and you have no idea where to turn for help.

This scenario describes the voice of suffering--what someone could be experiencing with undiagnosed neurological Lyme.


SYMPTOMS OF NEUROLOGICAL LYME

Chronic neurological Lyme has recently become a hot topic as Lyme advocates and organizations such as ILADS are working towards raising awareness about the disease and improving diagnostic guidelines.  Pain, weakness, and flu-like symptoms are commonly associated with Lyme disease.  Those who have the erythema migrans rash or other obvious symptoms of the disease are often able to find immediate treatment without major complications; however, there is a whole other group of people who do not have obvious Lyme symptoms and suffer silently from chronic and/or neurological Lyme.  These individuals' unique conditions have not typically been made known to the general public.

Over the past few years, I have talked to a handful of people who have been diagnosed with or suspect that they have Lyme disease.  Through their experiences, I have learned about a vast array of Lyme symptoms that vary from person to person.  I am not sure why some seem to respond fairly quickly to treatment, while others do not recover and their symptoms worsen with antibiotics and other Lyme therapies.  I am not a doctor or an expert on Lyme; however, I have struggled with Lyme symptoms for several years.  The information in this article is not intended to be expert advice or offer diagnoses/treatment for Lyme disease.  The information I am sharing is based on my personal experience and the experiences of others I know.

It is Not Just About Lyme

Although Lyme disease can cause cognitive impairment, in my own experience Lyme is not necessarily the primary cause of the neurological problems associated with the disease.  Lyme can be a catalyst for other issues in the brain and body.  Here are some other factors that may contribute to neurological problems associated with Lyme disease.  Each individual situation will vary.

Lyme Co-infections, Parasites, and other Pathogens:  Lyme can be accompanied by other co-infections, pathogens, and parasites.  The symptoms of these pathogens may overlap each other, and they can cause both physical and neurological problems.  When I was being treated for Lyme, I was also being treated for various Lyme co-infections and other conditions including West Nile Virus, Epstein-Barr Virus, and a few different parasites.

Candida:  Candida, an imbalance of yeast, can cause neurological problems for individuals with Lyme.  Antibiotic therapy is the standard treatment for Lyme disease, and antibiotics will destroy the "good" bacteria that keep the yeast under control.  Candida carries potentially harmful substances that may enter the body when the yeast dies off.  A few years ago, my practitioner discovered traces of acetaldehyde in my system that was perceived to be a reaction between the candida and sugar in my body.  Acetaldehyde is a chemical released into the body when consuming large amounts of alcohol.  At that time, I was having severe episodes of brain fog, blurred vision, and vertigo that exacerbated with an empty stomach.  I do not drink alcoholic beverages, and my candida imbalance apparently contributed to these episodes.

Heavy Metals in the Body:  Mercury and other metals can be significant sources of neurological problems for the individual with Lyme.   I have found that parasites and pathogens such as Lyme can carry mercury and other metals that are potentially released when they die off.    Metal sensitivity has been a substantial barrier to my healing.   I have had several issues involving sensitivity to the metal in my dental filings and implants.  About a year ago, I had all of my dental amalgams safely removed and then went through several months of mercury detoxes.  The side effects of the mercury in my system led to further impairment of my balance and mobility that occurred intermittently during the detoxification process.  My dentist has recently removed all of my dental metal, and I am looking forward to the healing benefits from this process.

History of Head Injuries:  Individuals with a history of a concussion or head injury may have a higher risk of neurological symptoms associated with conditions such as Lyme.  As a child, I fell headfirst off of a swing set and unknowingly sustained a head and neck injury.  Although I was unaware of the full impact of this injury, I can recall specific changes in my body from that incident.  When I came down with Lyme disease, symptoms related to this injury contributed to my chronic vertigo and related issues.

Bizarre Sensations in the Body

Bizarre bodily sensations associated with Lyme and related disorders can be very upsetting, especially when you do not understand what is happening or why.  Here are some symptoms that I have experienced and/or have been described by others who suffer from neurological Lyme.

Numbness/Tingling:  Numbness, tingling, and facial paralysis (Bell's palsy) are some of the more common symptoms of Lyme. Individuals may experience numbness and/or tingling in specific locations such as arms, hands/fingers, legs, feet/toes, etc.  The numbness sometimes will relocate on the body.  I have experienced facial numbness around my mouth and eyes as well as occasional numbness in my fingertips and toes. I have also had a numbing sensation crawling across my head that felt like goose bumps or similar to when a part of your body "falls asleep."  When experiencing numbness, the sensation may not be of complete numbness but more like when you are coming off of Novocaine after receiving dental work.

Involuntary Muscle Movements/Tremors:   Some individuals with Lyme struggle with muscle tremors and twitching in their eyes.  When I was first being treated for Lyme, I experienced involuntary muscle movements and tremors that were all over my body, and I was concerned that I might have Parkinson's.  I have also had unusual twitching sensations that felt like a rubber ball was bouncing in my head.  I called the sensation "bouncy brain."

Pain and Bizarre Sensations in Extremities:  Sometimes people have described pain and bizarre sensations in their arms/hands and legs/feet.  The pain can be extreme and feel like someone is stabbing their hands or feet with shards of glass.  Extremities may also feel heavy and clumsy when attempting to walk or do certain tasks.  It may seem as though the brain isn't communicating properly with other parts of the body causing difficulty with mobility and use of hands.

Vertigo/Loss of Balance:   Chronic vertigo and problems with balance have been my greatest challenge in my battle with Lyme.  Vertigo is the feeling that you are moving/spinning or the environment around you is moving/spinning even though you are stationary.  I have often felt as though I have come off of a fair ride, and I sometimes will momentarily lose my bearing.  The floor has felt crooked or like it was swinging back and forth when I attempted to walk.  In extreme situations, I would fall and be unable to walk more than a few feet.  These severe episodes of vertigo/balance problems appeared to be associated with specific treatments or metal detoxification.  They have usually lasted for short periods of time and have improved after rest.  

Brain Fog and Cognitive Changes

Lyme disease and other related conditions can impair the function of the brain.  I have heard testimonials of neurological Lyme patients finding it extremely difficult to process information.  Some have described their cognitive issues as though something was seizing their brain.  I have been fortunate that I have not experienced any memory loss, and I have had minimal cognitive issues during my battle with Lyme disease.

Short-term Memory Loss/Difficulty Focusing: Individuals with Lyme can experience memory loss at varying levels.  The cognitive impairment may simply be forgetfulness and difficulty recalling a fact or remembering a name.  In more extreme cases, individuals may experience short-term memory loss and inability to recall familiar words.  Difficulty concentrating and focusing is also common with Lyme disease.  Some find reading a book or watching a movie a daunting task because of their inability to concentrate on what is in front of them.  These cognitive changes are often intermittent and they come and go.

Brain Fog/Visual Disturbances:  Brain fog is also a common symptom of Lyme and other related conditions.  When having brain fog, you feel like you are in a mental fog with fuzzy thinking.  Episodes of brain fog are usually sporadic. When I have experienced brain fog, I also noticed that my vision was cloudy and things around me seemed unreal.   My brain fog was often associated with, candida imbalance, treatments for Lyme and other pathogens, and issues involving exposure to metal in my body.  With these episodes, I found that eating foods high in protein, drinking fluids, and getting some rest/sleep would usually alleviate the brain fog.


Unusual Sensitivities

Neurological Lyme and other related conditions can often lead to increased sensitivity and allergies to food, chemicals, fragrances, and multiple stimuli.  This is very frustrating for the person struggling with Lyme and is difficult for others to understand how these sensitivities affect the person's quality of life.  The individual with Lyme may experience chronic pain and headaches which can cause them to be extremely sensitive to physical touch and other stimuli that are common headache triggers.  Recently, I have read information on how damage to the hypothalamus from Lyme neurotoxins causes the brain's lymbic system to become hypervigilant and treat external stimuli as a threat thus causing extreme sensitivities to certain foods and environmental triggers.  These are some of the sensitivities that individuals with Lyme and other chronic conditions experience.

Food Allergies:  Food allergies/sensitivities may emerge with chronic and neurological Lyme, especially if the individual is struggling with a candida imbalance.  Lyme thrives on certain foods such as sugar and carbohydrates.  Lyme literate doctors and other practitioners may recommend a specialized diet, eliminating gluten, refined sugar, and dairy. When on a specialized diet, you may also need to take certain supplements for nutritional balance and healing.   I have tested for several food allergies and have an unusually high sensitivity to gluten, sugar, and processed foods.  My practitioner has worked with me on a specialized diet for my specific sensitivities and nutritional needs.

Sensitivity to Light, Sound, and Movement:  Sensitivity to light, sound, and movement is also a common struggle with chronic and neurological Lyme.  Sometimes the brain can only handle so much stimuli before it becomes overloaded.  This will make shopping, public activities, concerts, and other situations involving crowds daunting for the individual.   I have significant light sensitivity and often wear sunglasses to decrease light exposure.  Some people wear specialized sunglasses, hats, or sun visors to minimize exposure to light.  Ear plugs may also be beneficial for reducing exposure to loud sounds.

Chemical and Fragrance Sensitivities:  Multiple chemical and fragrance sensitivities is a frustrating issue for individuals struggling with chronic diseases such as Lyme.   Common chemical sensitivities include perfume, air freshener, fabric softener, cleaning supplies, bleach, gasoline, paint fumes, and VOCs.  These chemicals and fragrances can trigger migraine headaches, vertigo, breathing difficulty, and other adverse reactions.  I make it a habit to carry Kleenex with me to discretely use in situations where I am exposed to chemicals and fragrances.  Some people also use essential oils to offset the adverse effects of fragrances and fumes from chemicals; however, individuals can have allergies to these oils as well.  Certain essential oils may trigger symptoms.

Electromagnetic Frequencies:  Sensitivity to electromagnetic frequencies or EMF's is a topic that is emerging in recent years due to increased use of cell phones, wireless internet, and other electronic devices.  EMF sensitivity has been a significant struggle for me.  I have recently read a few articles that express concern that EMF's will inhibit the healing process of patients with chronic Lyme and other related conditions.  There is no known way to completely eliminate electromagnetic frequencies in the environment; however, there are several products available for people to try.  The products are designed to help individuals cope with the EMF sensitivities with a goal to create an environment conducive for them to heal despite the presence of EMF's.  I have heard of some debate about the usefulness of these products and if they truly work.  In my experience, some of them are more helpful and work better than others.

Disrupted Sleep Patterns

Insomnia is also a common problem with chronic Lyme.  Pain, unusual symptoms, and bizarre sensations in the brain and body can emerge at night when lying in bed.  Early on, I struggled with inability to sleep.  My insomnia was very challenging for me to deal with as I battled pain, vertigo, twitching in my eyes, and tremors throughout my body.  Some people have described being kept awake by a song or phrase blaring in their mind over and over, and they are unable to shut it out.   Nighttime insomnia can lead to excessive worry, anxiety, and depression especially when the person with Lyme is unaware of what is causing their symptoms.  After my practitioner advised me on making environmental changes in my bedroom, I have no longer struggled with insomnia, and I have a new appreciation for sleep, a wonderfully healing activity.

Decreased Ability to Handle Stress

Chronic and neurological Lyme is often physically and emotionally debilitating for the individual and impacts all aspects of life.  Chronic pain, candida imbalance, hormone and adrenal imbalances, nerve damage, and cognitive issues are just a few of the many emotional triggers that are compounding the person's daily life and diminishing the individual's ability to handle stress.  Someone who is experiencing these struggles will naturally feel anxious and/or depressed, especially when the person is unaware of the causal factors for their symptoms.  Just about every individual I interviewed reported that a medical practitioner suggested they be treated for depression, anxiety, or other psychosomatic disorders prior to their Lyme diagnosis. The emotional side of this complex disease is very real and should be brought into consideration in the big picture; however, emotional issues should not be determined as the primary source of the problem.  I found significant emotional relief in knowing and understanding the cause of my unique condition.  As long as I understand what I'm dealing with, I can learn to cope with the emotional side of it.  In some circumstances, emotional interventions may be necessary for the person to manage their situation.  Each individual circumstance is different.

Loneliness, Withdrawal, and Isolation

Debilitating conditions such as chronic neurological Lyme also can lead to loneliness, withdrawal, and isolation.  The vast array of symptoms and sensitivities associated with the disease are very overwhelming for individuals to cope with.  Friends and family may not understand the full scope of the struggles going on.  Some will criticize the person and tell them to "suck it up" or "get over it."  Many do care and are well-meaning in their intentions; however, they are unaware and unsure what to do or how to help.  People are also extremely busy with their own lives and may not have time to engage with or help the person.  Individuals with Lyme are sometimes physically unable to get out of the house and are isolated from others.  They may be unable to participate in activities they used to enjoy with their friends and lose connection with their previous social network.

 Holidays and events with family have been the most difficult for me, especially when I have missed out on special occasions with the people I love.  For any traveling or special events, I need to plan ahead for my meals so that I am on top of my specialized diet.  I also prepare myself to address potential chemical, fragrance, light, and other sensitivities.  I prefer not to draw attention to myself in these situations. I will also worry that my host might be offended if I am unable to eat the meal they have prepared or if I am experiencing a specific sensitivity in their home.  I have sometimes sensed the discomfort of others around me. I know that they do not know what to say to me, and I make it a point not to take it personally.

HELP AND HOPE

"Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy."  Psalm 103:2-4

Chronic neurological Lyme is a debilitating and overwhelming disease to cope with because it affects every part of your life.  I believe that it is essential to educate yourself about what you are dealing with and come up with strategies to manage the disease to the best of your ability.  Whether you have neurological Lyme, a mysterious condition, or an untreatable illness--no matter how bleak things look or what your circumstances are, don't give up hope.

For more information on coping strategies and hope in times of suffering, check out the 2nd part of my article on Neurological Lyme here: http://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering-2.html

 RESOURCES


For more information about chronic Lyme, my testimony, and the testimony of others, you can read these blog articles:

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

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

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

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

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

Judy's Story:  http://lymedisease.org/news/touchedbylyme/lyme-fog-wall.html

Maggie's Story:  http://www.burlingtoncountytimes.com/life-style/reality/living-with-lyme-disease/article_f7b435cd-8471-51e5-8bf2-27a3da1943ad.html

Celebrity, Yolanda Foster:  http://lymedisease.org/news/touchedbylyme/lyme-fog-wall.html

For more information about help and support for chronic Lyme, visit ILADS website:  

ILAds.org

For more information about Lyme disease and treatment information:

http://articles.mercola.com/sites/articles/archive/2013/09/04/lyme-disease.aspx

This article shares treatment strategies for Lyme as well as information regarding EMF's and the healing process:

http://articles.mercola.com/sites/articles/archive/2012/02/05/dr-dietrich-klinghardt-on-lyme-disease.aspx

This article describes how impairment of methylation, a detoxification pathway, contributes to the recovery of Lyme and other chronic conditions that are difficult to treat:

http://suzycohen.com/articles/methylation-problems/

The movie, Under our Skin, profiles chronic and neurological Lyme.  This documentary has helped to raise awareness about this disease.  Here is the link to watch it online:

http://underourskin.com/film/

http://underourskin.com/sequel/

(the voices of Lyme) The voice of the Battle: Sally's Story

"We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us."  Romans 5:3-5

THE VOICE OF THE BATTLE

Chronic Lyme disease is a controversial condition in which its very existence has been questioned.  This mysterious illness is gaining public awareness thanks to the courageous warriors who have come forward with their stories of bizarre and often-times debilitating symptoms associated with the disease.  Although some have fully recovered from Lyme with long-term use of antibiotics and/or alternative therapies, there are also those who do not respond to treatment.  Their symptoms can persist for years.   While, I am thrilled for those who have conquered the disease, I believe it is necessary to also raise awareness about the daily long-term struggles that others experience battling chronic Lyme and related conditions.  Sally has been battling this devastating disease for more than four years.  In 2012, Sally and I were introduced to each other through the church prayer team.  Since then, we have built a supportive friendship of compassion and understanding for our daily battles.   Sally agreed to be a voice for the battle of Lyme by sharing her story; however, the emotional and physical scars of the battle are still fresh, and she has requested that her identity remain anonymous.


IN THE TRENCHES:  SALLY'S STORY

"Be strong and courageous.  Do not be afraid or terrified ...  for the Lord your God goes with you; he will never leave you nor forsake you.  Do not be afraid; do not be discouraged."  Deuteronomy 31:8

Sally was an energetic young woman who prided herself in taking good care of her body by exercising regularly and staying active.  With a new career in the medical field, a beautiful home in the Twin Cities, a caring husband, and her second son on the way, it seemed like she had it all. About a year later, in the summer of 2011, Sally suddenly began to experience numbness in her extremities.  The numbness started in her hands and then spread to her calves and other parts of her body.  She also noticed pain and unusual coldness in her hands and feet.  She experienced weakness like she had never known before and had extreme difficulty walking, ascending stairs, pushing her son's stroller, and navigating a shopping cart.  Sally was afflicted with excruciating pain in her hip accompanied by spasms and muscle tightness.  She observed that her leg seemed to lock up when she walked.  It seemed like her brain wasn't communicating properly with the rest of her body.  Sally also experienced brain fuzziness and short-term memory loss.

Sally and other members of her family worked in the healthcare field, and she was knowledgeable about the functions of the body as well as impaired mobility and cognition.  Unfortunately, her own mysterious condition had stumped her as well as medical practitioners involved in her care.  She was desperate to find someone who could identify the source of her physical and cognitive impairment.  Over the course of three years, Sally had been examined by at least seventeen doctors and health care professionals, including general practitioners, neurologists, orthopedic doctors, chiropractors, rheumatologists, and physical therapists. Sally received a series of tests including an MRI, EMG's, and various blood tests.  The tests ruled out MS, Guillane-Barre, ALS, and other related conditions.   During Sally's evaluations, the practitioners had a variety of explanations for her symptoms.  Some doctors reported that nothing was wrong with her, she had a conversion disorder, and her symptoms were psychosomatic.  A practitioner once told her, "A hundred years ago, people would call what you have hysteria."  Another doctor watched her leg buckle every few steps when she walked and asked her, "Are you trying to walk like that on purpose?"  At one point, she was diagnosed with a non-specific connective tissue disorder.   One of the practitioners referred Sally to the Mayo Clinic for further evaluation; however, they declined her case stating her condition was not serious enough.  Sally tried a variety of treatments including thirty days of prednisone, antibiotics, steroid injections, and physical therapy.  None of the treatments helped and the physical therapy only worsened her hip pain.

Sally was no longer able to perform the physical requirements of her facility position and was forced to give up her job.  Sally and her husband also decided to sell their home because it was difficult for her to climb the stairs in their house.  They purchased a smaller one-story house and moved across the river into Wisconsin.  Shortly after that, in the fall of 2012, Sally was evaluated by an occupational medicine doctor who suspected she had Lyme disease.  The practitioner treated her pelvic instability with a SI (sacroliac) belt and referred her to an internal medicine doctor who specialized in Lyme.  The Lyme specialist provided services through a complementary health clinic that utilized both conventional and alternative therapies.  After being diagnosed with Lyme disease through the process of elimination, Sally began a regimen of multiple antibiotics, supplements, and natural remedies.  A naturopathic practitioner also put her on a restricted diet, eliminating gluten, dairy, and refined sugar.  Sally noticed some improvement with use of the SI belt, Lyme treatments, and diet changes.  Her mobility improved and the pain decreased; however, she continued to struggle with tightness in her hip, intermittent numbness, and neurological problems.  After approximately eight months of treatments, the specialist informed her that tests indicated the Lyme was no longer active in her system.  He believed her ongoing symptoms were from "residual effects" of the disease.  He suggested she take a break from the natural remedies and other therapies before trying something different.

In three years, Sally had spent thousands of dollars on doctors, tests, prescriptions, and therapies for Lyme without full recovery.  She was left feeling discouraged and uncertain as to what to do next.   A few months after stopping Lyme treatments, Sally was introduced to a couple of graduate students in the process of completing their training in the Field Control Therapy (FCT) Graduate Program.  They offered to include Sally as one of their FCT case studies, collaborating with their instructors to examine Sally and provide alternative therapies to treat her condition.   By doing so, the FCT practitioners verified the presence of both Lyme and the co-infection bartonella in Sally's system.  They also uncovered additional root causes for her long-term debilitating symptoms. Sally finds FCT to be challenging because the healing process has been extremely slow for her. Sally noticed that her symptoms would worsen when addressing specific conditions and root causes.  She was also required to avoid exposure to electromagnetic frequencies (emf's) (cell phone, computer, television, etc.) while doing the therapies, which has been difficult for her.  Despite the slow healing process, Sally has gained more insight about her body and appreciates the compassionate and thorough care she has received. "They are wonderful, supportive, and generous practitioners that have told me that it isn't in my head.  They have found many things stressing my system.  I hope that when we address some of these problems, my healing process will speed up."

BATTLE WOUNDS

"Be kind, for everyone you meet is fighting a hard battle."-- Plato

Sally has been afflicted with both physical and emotional scars from her painful battle with chronic Lyme.  It has been frustrating for her to give up her independence and rely on others.  Sally's husband often works long hours and travels days at a time for some of his jobs.  He has been very supportive of her situation; however, their daily battles create marital tension. When her husband is unavailable for long periods of time, it is physically demanding for Sally to manage their two sons.  Sally has been creative and strategic in keeping up with them, taking them places, and involving them in activities.  Shopping and other basic errands have been challenging tasks for Sally to engage in.  Early on, Sally was unable to ambulate long distances, needing a wheelchair for mobility.   For a while, she used a handicapped sticker to help ease the walking distance.  Unfortunately, strangers were sometimes rude to her by swearing and making accusations about her using a handicapped parking spot.

Family and friends have tried to be supportive; however, they have not fully understood Sally's situation or how to respond to it.  Some have questioned if she really has Lyme disease.  Others have minimized her physical condition and advised her to distract herself, ignore the symptoms, and push through the pain.  Some of Sally's family have been skeptical of FCT and questioned why she is using alternative therapies instead of seeing a doctor to treat her condition.  When family and friends have prayed with her, some have suggested that she needs enough faith to believe that God will heal her body.  Others have stopped including her in activities and significantly reduced their overall contact with her.   Sally has been weighed down by painful memories of unkind words from medical professionals and insensitive comments from others. She also has grieved physical, financial, and relationship losses as well as being burdened with guilt, isolation, and decreased self-confidence.    These battle wounds have been a tremendous burden for her to carry.

 THE ULTIMATE HEALER

"Come to me all, you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."  Matthew 11:28-29

Sally's faith has been the rock and the foundation of her hope through these painful years.  Sally uses Christ as her example and guide towards coping with her daily struggles and past battle wounds. She has worked towards forgiveness and patience with others and strives to live as Christ has called her.  Although the "stinking thinking" (as she likes to quote author and speaker, Joyce Meyer) sets in once in a while, Sally strives to embrace life with an attitude of gratitude, focusing on what she is thankful for instead of her losses. Sally was forced to give up her independent lifestyle and beautiful home for a more humble abode and way of living; however, she has found blessings in these changes.  Sally now gets to be at home with her sons and spend quality time with them on a daily basis.  She feels at peace residing in a beautiful riverside community away from the hectic city.  Sally has also found refuge at her new church.  She is involved in a mom's group and has become acquainted with women who minister to her needs and support her.  "It seems like since I have moved, things have come together for us in a divine way.  I often see God working in my life through others providing our family with meals, getting rides to appointments, receiving small gifts and surprises, and other needs coming just at the right time.  Our needs are sometimes met even before I have asked the Lord for them."

Despite the pain and struggles, God has transformed Sally's life and her faith through this experience.  Sally more fully comprehends her relationship with Christ as her ultimate healer and her savior.   Prayer and daily trust in God gives her hope and gets her through each day.  "My faith is stronger now.  Prayer has helped me more than any medicine could."  

WAITING ON THE LORD

"Have you not known?  Have you not heard?  The Lord is the everlasting God, the Creator of the ends of the earth.  He does not faint or grow weary; his understanding is unsearchable.  He gives power to the faint, and to him who has no might he increases strength.  Even youths shall faint and be weary, and young men shall fall exhausted; but those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint."  Isaiah 40:28-31

Sometimes the most difficult part of suffering through years of health challenges is the waiting.  These seasons of waiting can be a heavy burden for the soul.  Our anticipation for Christ's return intensifies with such tribulation.  Sally trusts God to give her strength to "suffer well" by His grace.  During the tough days, she clings to God's word and believes His promises.  She doesn't give up hope for her breakthrough and healing.  My prayer for Sally is that she will come to the other side of her painful experience, boldly proclaiming what God has done for her in this long season of waiting on the Lord.

"Our soul waits for the Lord; he is our help and our shield.  For our heart is glad in him, because we trust in his holy name.  Let your steadfast love, O Lord, be upon us, even as we hope in you.'  Psalm 33:20-22

RESOURCES

*The information in this article illustrates an actual real life experience with chronic Lyme disease.   The name of the individual battling Lyme has been changed to protect that person's privacy.

For more information about chronic Lyme disease:
http://www.ilads.org/

To learn about my personal battle with chronic Lyme, visit my blog:
http://dzehm.blogspot.com/2012/11/enduring-winter-my-battle-with-lyme.html

For resources and information about coping with chronic conditions:
http://restministries.com/