Lyme Disease: Jessica’s Story

My earliest memories of my friend, Jessica Pitzer McLaughlin, stretch back to the nursery at First Presbyterian Church in Madisonville when we played at Ms. Ruby’s feet while she rocked back and forth in the rocking chair in front of the window. We drank Sprite out of pretty, green glass bottles and raced each other up and down the long hallway. We logged hours in that church, on youth group trips, and marching with the Madisonville North Hopkins Marching Maroons. One of my favorite memories of Jessica is standing out on the parking lot during band camp, all two hundred of us at attention, our sneakers melting to the asphalt, while the propeller on Jessica’s rainbow whirly cap spun like she was about to take off into the breeze. The whirly propeller hat became synonymous with Jessica in my head: quirky, completely adorable, wild and crazy, and ten kinds of fun wrapped up in a cute package.

Jessica in Hats

I remember the band competition at MTSU when Jessica marched off the field and was taken to a hospital for what we later heard was walking pneumonia. I thought it was strange at the time because I didn’t remember her being sick. What I didn’t know is that while out on the field, Jessica completely forgot where she was and what she was doing. Later that night her neck and head hurt so severely they were concerned about meningitis. But it wasn’t meningitis and now we know it wasn’t pneumonia, either. It was another flag in a series of warnings her body was giving that something was seriously wrong. It took more time and a lot more misery before Jessica finally found a name to apply to the body she could no longer control: Lyme Disease.

Jessica doesn’t remember a time when she wasn’t completely cocooned in the knowledge that Jesus is real and He is her Savior. She does remember consciously making a decision to follow him at age seven during an Amy Grant concert. But she says she was born with a little extra Holy Spirit than most people. She came into the world with the Light of God shining brightly, joy bubbling over in her spirit, and a zest for life that buoys everyone around her. Even life as a preacher’s kid didn’t dampen her love for God and other people. She acknowledges that being a PK was difficult because people often felt they had a right to pass judgments on her behavior that were unfair and at times brutal. It was like living in a glass house in which others decide they can and should scrutinize her and her family and share their judgments with others in negative ways. But, she says, her faith was nurtured and she grew in a spiritually rich environment that fed her already exuberant love for God.

Jessica B&W

That faith and love for God would be tested in extreme ways as her body began a slow downward spiral. She says she remembers becoming extremely fatigued during her junior year of high school. For an entire month she would get up and go to school, but be unable to keep herself from lying down in the floor by second or third period. Each day she was sent home and the total time accrued ended up being thirteen days that month. She jokingly referred to it as the “Laying Down Disease.” But she recovered and life moved on. It was another flag, another warning sign in a series of warning signs stretching back to age eight, when she woke up at Girl Scout Camp and did not have enough strength to move her legs to get out of bed. Jessica clearly remembers the camp director having to come to her cabin and help her to breakfast, still dressed in her pink Minnie Mouse nightgown. There were other strange phenomena, other warning signs along the way, but they were always diagnosed as other things, treated as such, and forgotten.

Jessica got through high school and college by taking a lot of Ibuprofen. Anytime she didn’t get enough sleep or she became stressed, her body would ache. The pain was all over and Jessica says she can’t number the hundreds of Ibuprofen pills she took over the course of those several years. She pushed through feeling bad and lived her life. She pretended nothing was wrong and ignored the warning signs. On the outside she was a young, beautiful, vibrant woman with everything going for her. On the inside, her body was slowly dying.

In April of 2001, Jessica was in a car accident on I-40 leaving Memphis. She was heading to Nashville for a friend’s wedding and hit a deer going 70mph. She then got rear-ended by a semi-truck and ran off the road into a ditch, narrowly missing a guardrail head-on. She walked away from the accident with only a few burns on her arms from the airbag and a bad case of whiplash. She spent the next year trying to get her neck and back to cooperate and the pain to lessen. But as time went on, the rest of her body declined. She felt the need to get up every morning and do yoga because she was so stiff when she woke up. She attributed it to the accident. Then she began having periodic flu-like symptoms. When those symptoms would come on, she would go to bed for a day and sleep them off. At the time she thought she had an amazing immune system, able to ward off bouts of the flu with just sleep. But it wasn’t the flu, and it wasn’t repercussions from the accident. Eventually her mind became foggy. She wasn’t able to multitask and handle stress like she used to. She was having trouble focusing on tasks and thinking things through. Her heart began to feel stressed and eventually she became so exhausted so much of the time, she feared that if she stopped, if she gave herself permission to go to bed and rest, she would not be able to get up. The exhaustion permeated everything about her to the point that Jessica feared giving in to it would end her. So instead she pushed. In her words, she became a fabulous actress. Since she looked completely normal on the outside, she could dress up and look beautiful, act out her part of being the bubbly, vivacious Jessica she’d always been, and no one knew how utterly miserable she felt.

But acting can only take a person so far. Jessica could not keep up the façade. One day a friend gave her “permission” to skip out on her responsibilities and go to bed. Jessica did and didn’t get up for two weeks. She went to the ER and was diagnosed with “husbanditis” because she was a newlywed. Then she was told it was chronic fatigue. A different doctor told her she had mitro valve prolapse and needed to be on heart medication for the rest of her life. Another doctor told her she simply needed anti-depressants for anxiety. None of it made sense. None of it seemed to explain everything or anything. Finally, Jessica’s mom, Berta Pitzer, talked to her about a friend who had Lyme Disease. Jessica went to her PCP and took the test. It was negative. Then she answered a questionnaire and had over fifty of the symptoms of Lyme Disease. At that point she went to a Lyme Literate Medical Doctor, got retested and finally diagnosed.

Jessica agrees that it is helpful to have something to name the thing that plagues you. Not knowing is worse. But knowing didn’t fix it. She began a three year course of antibiotics and for three months of that time, the antibiotics were pumped directly into her heart and bloodstream via a PIC line. So with PIC line in place, she kept living, not giving up a moment of her life. She drove from Memphis to Madisonville to photograph my wedding, smiling and dancing, disguising the pain. I didn’t understand the sacrifice she was making or that the next day, while I was flying to Florida for my honeymoon, she would barely make it out of bed. Jessica wanted a normal life, as do all our friends and family members who suffer from chronic illnesses and high levels of pain. They become great actors and we might never know unless we look close enough to see the cracks in their carefully crafted masks.

The three years of antibiotics helped, but could not cure her. Eventually the damage they were doing to her body outweighed the positive benefits and she stopped taking them. At that point, she began searching for homeopathic remedies and supplements to help keep her body going. She has taken many different herbs and vitamin supplements, but has found the most help in using Pure Therapeutic Essential Oils and enzyme therapy. The oils have given her life back and brought her to a high functioning level, with hopes for remission in the future. Jessica also uses an infrared sauna thirty to forty-five minutes per day as well as physical therapy stretches and exercises to combat muscle atrophy and joint pain. (For a full list of Jessica’s healthcare protocol, visit http://jessicaframedup.com/my-health-protocol/.)

The road from health and wholeness to a struggle for survival has been filled with potholes of depression, anxiety, anger, disbelief, denial, and embarrassment. Jessica is quick to point out that a diagnosis of Lyme Disease carries with it a stigma of shame. Because most medical professionals are not Lyme Literate, because the CDC classifies Lyme as curable with short-term antibiotics, because state medical boards eliminate the licenses of doctors who treat Lyme differently than what the CDC and IDSA guidelines call for and insurance companies won’t pay for treatment or cover those doctors, and because the general public does not understand what Lyme is and what it does to the human body, Lyme Disease patients are by and large ignored and shamed. They are made to feel as if they are crazy, or perhaps mentally ill with either depression or hypochondria. They are given labels of Chronic Fatigue Syndrome, ALS, Fibromyalgia, MS, Parkinson’s, Alzheimer’s, Autism, Depression, Anxiety, Migraines, or other auto-immune diseases and treated inappropriately. Their families and friends often do not understand why they can’t just “get over it” or “snap out of it.” They often lose their jobs, fall into the depression they were labeled with originally, and many, unfortunately, choose suicide in order to escape the physical, emotional, and mental pain of Lyme Disease and the ramifications from it.

Jessica and Alan Wedding

At the bottom of her lowest low, Jessica, too, wished for death:
“I was bedridden. The pain was from my jaw to my toes literally. Imagine every muscle and tendon in your body being sprained and all your bones feeling as if they are shattering as you move on top of having the worst flu of your life. I had to be assisted out of bed but they had to lift me by the back of my neck because I couldn’t have my hands or arms touched. I was literally decaying and dying on the inside. It would take me two hours to eat a bowl of soup because I could barely move my mouth or lift my arms. I couldn’t handle any light so I would lay in the dark with my blackout curtain on my window praying. I was in the darkest hell possible. Everything around me was darkness and the pain was death. I wanted to die. I prayed that God would take me home because I wasn’t living anymore, I was only surviving. To get up and pee would cause me to shake uncontrollably because the pain would send my body into shock. I imagined myself getting up out of bed and walking out of my life. Just walking and walking and never coming back. I wanted to run away from it all. I could see myself walk out of my room and down the stairs outside my apartment and across the field and down the street. I would walk and start a new life somewhere else where there wasn’t this abuse. The only problem was I couldn’t walk. So, I couldn’t run away. Silence and darkness and pain were my life for months on end. I caught strep throat during this time and almost died. I spent seven days sleeping on the bathroom floor because I was so nauseated and I couldn’t walk so leaving the bathroom wasn’t an option. The sores in my throat spread onto my face. My immune system was gone and I wanted to be gone, too. Days, weeks, months of being debilitated like this. Praying the entire time. I became very close to Jesus during this time. My faith was very strong and I was ready to be home because this was definitely NOT my home. I remember sometime during this time my husband, Alan, asking me to fight for him and to not give up. So, I did. I fought for my life because he asked me to. I had nothing left and was ready to leave but he wanted me to stay. So, that is when I decided to not give up and fight to get my life back.”

So she fights, one day at a time. She has slowly but surely taken back ground in her life. She has managed to be symptom free for a while twice. But any time there is physical trauma to the body, her health deteriorates rapidly. At any given time, Jessica’s pain level brings her to the point of tears. Her joints ache, her bones ache, her muscles are sore, and her skin hurts so much that touch is painful. Her health protocol of oils, infrared heat, and stretching helps. But often, Jessica chooses to ignore her pain level and go about the business of living. Her children, she says, have no idea that she is in so much pain so much of the time. They know mommy’s hands and arms and legs don’t work very well and they know that she gets tired a lot. But they do not know the extent of her condition and that’s the way she wants it. Jessica says it is one of her most sincere desires to roll around in the floor and play with her kids or chase them around the yard. But at all times she has to weigh the consequences of what will happen to her body if she pushes her level of exertion. If she does what she wants to do, will she have enough energy to make it through the rest of the day? If she pushes all day today, will she be able to get out of bed tomorrow? Jessica likens this to the Spoon Theory other chronic pain sufferers are familiar with: (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/).

Jessica and kids outside

Through it all, however, Jessica has never lost her faith in God or her joy in being His child. She trusts Him. She loves Him. She knows Him. And in that knowing she feels comfortable telling Him when she’s hurting, when she’s angry, when she doesn’t feel that she has enough left to give anyone. She communicates her heart to Him and her Daddy God, in turn, is faithful to her. He is faithful to be there, right by her side, on this journey she did not choose and does not understand. He speaks to her through scriptures and songs, ever-present, ever-loving, reminding her daily that this place, this world, this body, is not her Home. “Don’t let this throw you. You trust God, don’t you? Trust me. There is plenty of room for you in my Father’s home. If that weren’t so, would I have told you that I’m on my way to get a room ready for you? And if I’m on my way to get your room ready, I’ll come back and get you so you can live where I live. And you already know the road I’m taking.” (John 14: 1-4, MSG)

In the mean time, Jessica would like to see a few things happen for the general public and the medical community at large. She would like widespread education about what Lyme Disease is, what it does to the body, and how it is best treated. She would like the CDC and IDSA to overhaul their current guidelines, since she is living proof that they are completely backwards and ineffectual. She would like the government to help control the tick population as it does for mosquitoes, and to enforce stricter guidelines for the blood supply in the United States so that Lyme is not transmitted undetected through blood transfusions. She wants more research so that we know why it is such an epidemic and pandemic. Is it being transmitted other ways? By fleas, mosquitos, or unprotected sex? She wants more effective testing so that people don’t walk around for years misdiagnosed. In short, Jessica wants Lyme Disease to be taken seriously, researched, understood, and treated with the importance and attention it deserves.

Visit http://lymediseasechallenge.org/the-facts/ to learn more about how to help.
Check out the Take A Bite Out Of Lyme Challenge with Jessica’s video:

It has taken a long time for Jessica to come to a place of acceptance with Lyme Disease. She wrote “My Secret Life with Lyme Disease” to give a voice to the millions of others suffering and to raise awareness of what it is really like to have Lyme Disease. (http://jessicaframedup.com/secret-life-lyme-disease/) She didn’t choose it and she doesn’t want to live the rest of her life with it. But there is no cure and she has come to the conclusion that she has to do what is necessary to live her life with the joy she craves. It’s an intentional choice for her and not a byproduct of happy circumstances. Joy is her decision because she wants it.

There are practical things that would help. First, the expense involved with treating Lyme has sapped all financial avenues available to Jessica and Alan. She can’t afford to drive the six hours to Illinois to visit her LLMD so she follows the protocol he’s given her on her own. Unfortunately, she can’t afford everything on the protocol so she does what she can. Because she spends so much money on her health, it is difficult to afford healthy foods. Even when she does have healthy foods, the energy she needs to combat the level of pain necessary to fix healthy meals for herself, her children, and her husband is hard to come by. She needs help and encouragement with her physical therapy regimen, but can’t afford to visit a physical therapist. She’d like to use acupuncture as part of her protocol, but she can’t afford to see an acupuncturist. Massage therapy is vital to her staying functional, but she can’t afford to see her Licensed Massage Therapist as often as needed. Volunteers with these skills would be a Godsend, as well as someone to just help with household chores and cooking. Daily life is difficult and the responsibilities of running a household are sometimes not conducive to the level of pain Jessica lives with.

Jessica Family Christmas

Her biggest hero is her husband, Alan, who swept her off her feet as her high school sweetheart and champions her each and every day. One of the biggest ways Jessica says he helps her is by treating her like a normal person. He encourages her to be strong and tough, to do all that she can and not to give up. She says they have an agreement that they don’t talk about the struggle unless necessary. She doesn’t want to talk about how bad the pain is. She doesn’t want to outline what she was or wasn’t able to do on any given day. Instead, he finds ways to make her laugh, he supports her, and on the really bad days, she specifically asks for what she needs. He doesn’t enable her to give up. He makes her able to keep living and reaching for more. He supports her in her work and mission as she pursues REALLY living and bringing life and healing to others’ lives.

And on the dark days, Jessica is thankful that God gave her an extra measure of His light and joy:
“The light He gave me when I was born has baffled many people to the point it kind of made me uncomfortable. People used to always ask what I had that was different. What drug was I on? Why was I different? People would think my joy and laughter were fake. I felt like I needed to tone it down. But God knew He needed to give me light so bright that when complete darkness set in on my life there would always be at least a flicker left. He didn’t want my flame ever blown out. He knew what my future held. He knew the path I would have to walk. He knew that I needed joy and wisdom beyond my years so that I could endure this and still have joy and still be me. I’m still me inside.”

Jessica and Pitzer Family

Fighting Lyme Disease is hard. It’s ugly and lonely and no one wants the fight. But the truth is that any of us could contract this disease at any time. If you live in an area of the world where ticks also live, you are vulnerable. Antibiotics help and people do get better if treated immediately. But there are many more who go years without treatment, getting misdiagnosed time and time again, and never getting better. You may know someone who suffers as Jessica does, with or without the label of Lyme. Knowledge is power. Support those who are currently researching Lyme and raising money and awareness. Support those who suffer and love them without condemnation for the days you don’t understand and the disappointments you hold when they don’t meet your expectations. Empower them and give them reasons to keep fighting. Invest in their lives and invest in their fight. It could be your fight tomorrow.

For more of Jessica’s story, please visit her blog at http://www.jessicaframedup.com. For more information about Lyme Disease and the mainstream fight against it, check out this article: http://hub.jhu.edu/2015/05/26/lyme-disease-research-center#.

Jessica and Kids 2

And when you need a pick-me-up, jump into Jessica’s joy:
Healer by Kari Jobe – https://www.youtube.com/watch?v=Yzejd6r9DwE
(When I need to depend on God for my healing.)
Still by Watermark – https://www.youtube.com/watch?v=DXXw_pqqdmY
(When I want to go but I can’t and when I need to know that I am not in control and God is.)
I Can Only Imagine https://www.youtube.com/watch?v=BRPGRdbGHSs
(When I need to imagine being in the presence of God instead of in this life filled with misery.)
If You Want Me To by Ginny Owens – https://www.youtube.com/watch?v=qVYRc7LtvUA
(When I need to be okay with this path that God is allowing me to walk because it doesn’t make sense to me.)
What Does It Sound Like by Bethel – https://www.youtube.com/watch?v=k4peIh5Ou8k
(When I need to feel heaven here on earth.)
Lay Me Down by Chris Tomlin – https://www.youtube.com/watch?v=1N2SbY3dJuM
(When I need helping laying down my own life and my own desires to walk the path God has before me.)
Do Something by Matthew West – https://www.youtube.com/watch?v=b_RjndG0IX8
(When I feel like it isn’t worth it to step out and help others find healing… God wants to use me)
God’s Not Dead by Newsboys – https://www.youtube.com/watch?v=S_OTz-lpDjw
(When I have doubts that God is even real or there for me… I remember the love that only God can spread)
Greater by MercyMe – https://www.youtube.com/watch?v=S_OTz-lpDjw
(When I feel inadequate for doing this life… He is greater and living inside of me! It doesn’t matter what my weaknesses are)
Where I Belong by Building 429 – https://www.youtube.com/watch?v=he32vwlKQPY
(Reminds me that all the misery I’m going through will end someday because this is not my home and someday I get to go home!)
Some Nights by Fun – https://www.youtube.com/watch?v=qQkBeOisNM0
(This spoke to me as I was so lost at times not understanding or know what to be or how to be. God was there and I was at war but I felt bewildered in this fight for my life.)
Horses by Yes Nice – https://www.youtube.com/watch?v=YAXWW6HJ3Cw
(When I needed a fun silly pick me up about the battle I was in that someday it would be over and that I would be delivered! I get to go home someday!!)
Holding Nothing Back by Jesus Culture – https://www.youtube.com/watch?v=DW3xgo6NNk4
(When I need to declare that I will fight and I am free of this misery because of Jesus and there is nothing that is going to hold me back in this life because of who I belong to!)
This Is How We Overcome by Hillsong – https://www.youtube.com/watch?v=aKMSWd1ot3E
(This is how we overcome. We let God turn our sorrow into joy.)
In The Light by DC Talk – https://www.youtube.com/watch?v=vrxXaeCLf-w
(I will always walk in the light… my gift is sharing the light… when I stray it just doesn’t work for me! I need the Lord to be my Light always! I am human and I have all the usual human struggles… this song speaks to that!)
Counting On God by Desperation Band – https://www.youtube.com/watch?v=XNSBBvxGdWg
(My fight is against Evil and I’m counting on God to bring me joy in all of it.)

Isaiah 40:31 – I will always focus on this scripture because I will continue to wait on the Lord for strength and the ability to run again!
2 Corinthians 12:8-10 – At first I didn’t think of it as a gift…
James 1:2-4 – Consider it a sheer gift when test and challenges come….
1 Thessalonians 1:6 – Live out your faith in your suffering.
Job 40:1-15 – When I think I know what is best I read this to put myself in my place… under God.
Job 42: 1-6 – When I need to apologize to God for thinking I know what is best.
Ephesians 2: 7-10 – When I need to trust God to do good and join Him in that despite my circumstances.
Hebrews 11 & 12 – Having Faith in what I don’t see and finishing strong no matter what
I Corinthians 13: 1-13 – Love conquers all
Matthew 5: 14-16 – Be a light to this world no matter what your circumstance
Proverbs 3: 1-12 – don’t assume you know it all
Psalms 119:105-112 – I’ll never turn back
The book of Ecclesiastes – Everything is just smoke if God isn’t the reason for living. When I faced that the world is broken and miserable and there is no good here on earth (without God) I searched for meaning and how to have joy in the midst of the terrible misery. This book taught me a lot and brought more wisdom to my life that truly the world is a very broken place and my rose colored glass have been completely broken now by the pain I have experienced. There is no good at all in this world and there is not point to all of this… unless God is in it. So, that is why and how I find joy. God is in it all and he is calling us all home. If He wasn’t here my life would be worth nothing and I can’t believe that is true. Reading A life Well Lived by Tommy Nelson is a great study on the book of Ecclesiastes.

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6 responses to “Lyme Disease: Jessica’s Story

  1. swarthen@embarmail.com

    Thank you for sharing your story. Everything mentioned is all to familiar with me as well. Most doctors in my area do not understand lyme disease well enough to help those that have suffered for a long time.

    • It seems that is all too common. Jessica had the most success finding a Lyme Literate MD. But even so, she says she’s had the best response from using therapeutic essential oils. Have you tried them?

  2. Berta Pitzer

    Liz, thanks so much for writing about Jessica’s battle so compassionately and with great eloquence. You helped make it possible for her to step out of the shadow and into the light about Chronic Lyme. May the world recognize this horrific epidemic and stop it like they have so many other diseases! God bless you.

  3. Diana Fernandez

    I totally know how you feel . Thank you for giving me hope . I’m so afraid to have children and get married, because I’m afraid to be a burden or be to sick to have a family. I can see that’s not always the case . 🙂 I also want to spread awareness for this terrible disease. I hope we can make it happen together! Thank you for sharing your story.

  4. Shelly Johnson

    Beautifully written Liz. I, too, remember the propeller hat that Jessica used to wear at band camp and it was the perfect representation of her personality. As long as I have known her she has had that “light” about her – even on her darkest days. Jessica and I were roommates in college for a couple of years and even through the pain she finished a double major before I finished my one! Her ambitious nature and love for the Lord was always so contagious! Thank you for helping to spread awareness of this debilitating disease. I pray for a cure for her and everyone else everyday.

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