My Journey

I love stories. I love the idea of journeys.

But this journey is not a story I ever wanted to share.

I promised myself, however, that if I ever came to see the light, if I ever came through Lyme Disease and its related conditions, I needed to share it – just in case it helps someone on a similar road to feel a little less alone.

So although I have managed to condense it all into just a few words – please know, it has not been a quick ride.

But for whatever it’s worth, I hold this up to you, these flickers of light and life that I discovered in the darkness…

The Beginning

I started to experience mysterious symptoms in 2007, a year after our second son was born. I went through all the usual tests, but everything came back normal.

Over the next two years, my symptoms became distressing. I was deeply fatigued, unexplainably so. I experienced constant swollen lymph nodes, low grade fevers, achy joints, terrible headaches, nausea, and shortness of breath.  I felt like I had the flu all the time. I saw many specialists, but there were no real answers.  Ashamed and discouraged, I began to question if  I was just imagining it all.

As a busy mom to two little boys – a baby and a toddler at the time – I became very good at hiding how badly I felt.  I tried to hold it together on the outside, but on the inside, I was crumbling. I desperately tried all kinds of alternative treatments.  Nothing seemed to help.  A friend finally suggested that I see an infectious disease doctor, a Lyme Literate specialist, in New Mexico.  Cautiously hopeful, I made an appointment. Dr. S carefully and compassionately listened to my story, ordered a dizzying amount of blood work, and diagnosed me with Lyme Disease, Chronic Lyme Disease.

I would soon learn that Chronic Lyme was controversial, and that within the medical community, there were varying opinions on the persistent nature of the bacteria and the accuracy of the diagnostic criteria set by the CDC. I would discover that treatment options were diverse, at times conflicting, prohibitively expensive, and risky.  Also,  it seemed treatment wouldn’t necessarily cure me – and that it would take a long time to feel better. In fact, I would have to get worse before getting better.

I couldn’t imagine feeling worse.

I felt like I had literally entered a maze. I had no desire for complication and controversy.  I only wanted to make dinner and not fall over.

Yet I felt I had no other choice. I had to get better for my family.  I underwent long term antibiotic therapy with some modest improvement — but stopped when I found out I was pregnant with baby #3.

My husband and I were scared of what this would mean for the baby, for me. But to our surprise, I started to feel great by the second trimester!  We had our third child, a beautiful and healthy daughter. Finally splashes of pink joined the Hot Wheels and Batman caves in our living room. Life was busy and exhausting, but we felt complete!

Relapse

In 2012, just months after our little girl turned two, I began to experience near passing out episodes.

I remember December 17, 2012 like it was yesterday. I ended up in the emergency room with heart palpitations, difficulty breathing and this intense feeling like I was going to pass out. I was released from the hospital and was told I simply had a panic attack.

In all my thirty-something years, I had never had a panic attack before. I truly felt like I was losing control of my life.  I felt like a hypochondriac as symptoms continued full force despite my best efforts to address the “panic.” Why was my body so afraid? I stopped going places. Family and friends quietly wondered, is she having an emotional breakdown?  I prayed and prayed. I poured over God’s promises in Scripture. I listened to a constant stream of Christian music and watched hours of sermons and testimonies. I sought out a counselor.

But the symptoms continued to be real. It got to the point where I couldn’t sit up in a chair. My heart raced at the smallest exertion. I just wanted to crawl out of my body.

I decided to re-treat for Lyme, but after a while, I was becoming uncomfortable with long term antibiotics– and I began to wonder if I needed to see my symptoms differently.  I made an effort to see Dr. C, the director of cardiology at a major hospital, who specialized in dysfunctions of the autonomic nervous system.  In that office visit, he made a clinical diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS), and deemed me “a classic patient.”  I went home that day, did my own Googling, and found that many with POTS are misdiagnosed with severe anxiety.

Just for the record, POTS is a disorder of the autonomic nervous system that regulates involuntary things like heart rate, blood pressure, digestion, respiratory rate, temperature regulation, and more. With POTS, your body can’t adjust to sitting or standing up without a flood of symptoms. Stirring soup on the stove, for example, feels like running a marathon.

No one knows what causes POTS – and there is no cure per se, although some medications help some patients. Some believe pregnancy is the trigger; some say it’s a post viral response. And yes, some believe POTS can be caused by Lyme disease.

A Prayer of Trust

I was surrounded by so much love from family and friends and covered in many, many prayers. For that, I am so humbled and thankful.

But the turning point came when one night, in a fragile moment, I asked myself this question … how much do I believe God when He says to trust Him?

 Let your hearts not be troubled nor be afraid. ~ John 14:27

Did I truly believe I could be free from fear? It soon became my heart’s cry to know God’s peace, no matter what my future held.  And slowly, He began to answer this prayer, though not as quickly as I would have liked. Eventually, hope returned to my broken spirit.

Moving Forward

It  has taken nearly seven years to understand that wellness is not just about fighting infections and environmental toxins and eating super cleanly –it’s also a journey of trusting God to repair your spirit, to right your thoughts, to know His peace in your fears. Emerging medical science is seeing this more, that we are not just a bunch of cells and organ systems … our emotions and thoughts, and the condition of our spirit play a part in our wellness. As much as I yearned for physical wholeness, I realize now, I carried deeper wounds from my sins, pride, and fear.

Like many of you, I have learned to trust God through tear-filled eyes over the years. It’s not easy – but I’ve been reminded again that Christ always draws near to the broken who seek Him. He never forsakes us. He loves us more than we can imagine. He showed that by giving up His life on the cross, so that we may have a new life through Him.

God’s grace has truly sustained and brought me to a place of healing. Today I rely on natural therapies and a nourishing diet, and it has been doing wonders. Through all the triumphs and setbacks, I am living well again, and I’ve come a long way.

Thanks for reading my story. ❤

 

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14 thoughts on “My Journey

  1. Wow! What a story – I can’t imagine the strength of mind and heart and character that it took to get through that! And how beautiful that your faith journey was so much a part of your healing! Thank you for sharing!

    1. I’m glad you stopped to comment. 🙂 I appreciate you reading though this! This was a hard post to write … so hard, I have many times wanted to take it down. But I am leaving it up in case it brings anyone hope. What a journey it has been!

  2. Thanks so much Kim for writing this. Its an encouragement to me. I got my Igenex results about 8 weeks ago. One thing that has been on my heart to do is write about my Lymes journey. I met a woman in my hometown, London Ontario who has corresponded with you and she gave me your blog to read. She also has a blog that is amazing for Lymes information. But I want to blog about God’s deal with all of this. Truthfully at this point in my life He sustains me. I have struggled with health almost all my life and then got to a point where I was done with DRs and insurance companies and such and things that way quieted down. Then this. It rocked my world and my faith. I realized that this is one area of my life that I have always struggled to commit to the Lord and to seek Him about and to really trust His word on. I really felt like God said to me (shortly after I found out and had quieted myself from freaking out enough to go cut the lawn), “I want to heal you. Let me.” That has not left me in weeks. It showed me that I had a choice if I would invite Him into this area of my life. And so I have. But its difficult because I am a nurse and like my ducks in a row. I know that I want to be treated with antibiotics and see a naturopath as well. But I have asked God to please guide the desires of my heart and make me willing to go where and to whom He leads me to go. The thing that sticks out in what you wrote and many others I have spoke to is that this is no overnight cure. Yes, I prefer God to just heal me now but what if He wants me to go thru modern medicine and walk a long journey such as many of you have walked. And so it begins……
    Thanks for your sacrifice to share this. It does help! God Bless

    1. Thank you so much for sharing. My prayers are with you. I must say, I can relate to your story in so many ways … wow! I assure you … you are not alone and it is possible to improve despite how dismal it all sounds. Like you, I just knew that I had to learn to trust God in a way I never had before. It came to a point where I knew I had to let go and allow Him to carry me through this … it was hard. But while it has not been an easy road, I look back and feel blessed for all that I’ve learned through it … especially how I’ve come to see his faithfulness and his heart for the hurting. I too sensed God saying to me … let me heal you. I didn’t know what that meant … like whether it was that he wanted to heal me spiritually or physically … or both. But this journey has all been about trusting in the unknown. Praise God, I am doing much better … currently now I am only using natural treatments. So there is so much hope. I encourage you to continue leaning on God and he will direct your paths! I am so glad that you will be blogging about this journey too … it has been a vulnerable yet totally healing experience for me to write about all of this. 🙂

  3. Thank you, dear Kim, for sharing. I cried as I connected with your story, and thanked the Lord for being my strength, and for the one who has never, and will never, leave me through it all. He has been doing a much deeper level of healing in me as well as he searches me and tries me, cleanses and purges me of those things that were robbing me of adeeper, spiritual walk with Him. For this I am thankful, for my God is able to do exceedingly above all that I ask or think. No mear physical healing, but complete and thorough and restorative. I continue to trust him as he leads, through the ups and downs of this disease, and I am amazed at all he’s taught me and wisdom and information he’s allowed me to gain so that I can have relief, such as with essential oils.
    Thanks again for sharing. Keep growing in the Lord and may you, through Him, prosper in health as well.

    1. Annmarie, thank you for writing and sharing. I am so touched by your words. I am with you… I too am so grateful for the Lord’s constant presence in my life. As hard as it was to endure and hold on through this… I truly have begun to experience a deeper, transformative healing of the soul I never thought possible. I am so glad to hear you are trusting in Him and finding some relief. I have found a great deal of help through natural medicine as well. All the best to you… thank you for your encouragement and sharing your powerful story too. May you continue to ‘ve strengthened both physically and in your soul! God loves you! 🙂

  4. Dear Kim,
    What a heartfelt blog…I am so thankful that you kept your faith and trust in God to get you through all this to bring you to this deeper level of faith and relationship with Him…He loves you so much and what a blessing you are to all of us.
    God bless you and your family with a Mele Kalikimaka and Hauoli Makahiki Hou!
    Love,
    Aunty Kats

    1. Aloha Auntie! Wow, it was such a wonderful surprise to find your comment here. Thank you for taking the time to read this blog. I never planned to write a blog like this, but I believe it was something God put on my heart to do. Thank you for reminding me of God’s love… we can never be reminded enough. You are certainly a blessing to our family, and we hope to see you soon. Please take care and Mele Kalikimaka to you!

  5. Kim, my story is very much like yours. I ran fever for almost 2 years in the late 80’s and early 90’s. I was dx with FMS & CFS and almost convinced I was crazy. If not for Jesus I would never have made it. Through my illness, He taught me to “be still & know” because some days that was all I could do. As you said so eloquently, you learn to lean into Him. Through His strength, and with the support of my wonderful family, I continued to function and muttle through. 4 years ago, my oldest son was dx with Lyme and several co-infections. 3 years ago, I was also correctly diagnosed with Lyme and bartonella. Praise God, he is MUCH better, and I am getting there. God’s timing is perfect. While I, too, would have preferred instant physical healing, the suffering produced a brokeness and surrender I do not think would have been possible had I not been forced to depend on His strength all these years. God bless you for sharing your story.

    1. Ann… I apologize for this very late reply. Somehow I thought I had replied, but I am seeing only now (after all these months!) that it did not post. 😕 First, I just want to say that my heart goes out to you and your son. I appreciate so much what you shared. I know how hard and scary and confusing this is… and like you, if not for Jesus, I would not have gotten through- no way. I hope your son has continued strong in his recovery!! I pray you are experiencing the deep healing only He can give … I am thankful you found some answers and a direction. Recovery can be long but it is so possible!

  6. What a display of a wonderful and enriching richness of God’s grace in your life!:)
    I’m happy I found your blog, I have been on a journey with the Lord for over two decades, and I’ve failed severally in my ability to completely trust my saviour for everything. God has been good, and He is still good, the only thing is, when we’re going through trials and problems and it seems God is silent, we may actually lose confidence, but when we do persevere, there would always be that ever present grace of God in our lives.
    It’s a journey, a beautiful journey of faith.

    God bless you and your wonderful family Kim.

    Warm regards,
    Seyi Sandra David

    1. Seyi, I sincerely apologize for this late reply. I somehow missed this comment and didn’t have a chance to respond. Thank you so much for sharing your thoughts here! So glad you found my blog as well. God IS good. Life is hard for sure, and there will be trials of many kinds, but God has given us the strength to endure, to hope, and to overcome. So blessed that you too are on this journey of faith!

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