The Moment Lyme Took My Breath Away | Living Grace Blog

The Moment Lyme Took My Breath Away.

sympathy gifts

Last week, Trev and I were supposed to fly out of state for the next stage of my Lyme treatment. We had everything booked – flight, car rental, hotel stay, doc visits, dog sitter and were scheduled to leave Wednesday morn. But, my body had a very different plan.

About a quarter after 4 AM on Monday morning, I jolted awake and felt like something was off.

To be honest, this is a norm for me in my battle with Lyme disease. I usually take deep breaths to try and calm my body down before assessing whether or not we need to visit the ER. Yet again.

I was able to calm myself enough to not wake Trev and I slowly stood up to try and visit the bathroom. After two steps I sat down, knowing I was seconds away from passing out. I felt like I had lost most of my strength.

I could barely move my legs, but since I reaaaally needed to pee I decided I would pull myself by my arms the rest of the way. The tiredness was definitely veiling common sense for me at this point – if I can hardly move, I need help.

Our bedroom is about 5 feet from our bathroom door and by the time I made it there I just knew I needed to wake Trev. When I went to call for him I could hardly form words to speak.

After several attempts I finally was able to get out his name in a weak and slow Tre-vin, Tre-vin, Tre-vin chant. He heard me on the third call and I could hear him quickly rushing to me. As soon as he was with me I told him I felt like something was wrong and asked if he would sit with me. He agreed, but 20 seconds later I passed out and was out for about a minute.

As soon as I came to, I sensed a very clear “call 911” and so those are the first words that came out of my mouth. I’m a woman of faith and believe beyond a shadow of doubt, it was God nudging me – choosing to go to the ER is always a several minute discussion between Trev and I as we weigh out if it will be helpful or not.

Lyme is so political among doctors and I never fail to leave feeling like most doctors and nurses see me as a hypochondriac. So if I’m saying we need to go – we NEED to go.

My dear, sweet husband raced as quickly as he could to place the 911 call, put our dog in our bedroom, hide a key under our mat so someone could let her out later, all the while calling out to check-in with me. I felt like I couldn’t move, as if all strength had left me.

My arms and legs felt like jello and I felt a familiar feeling that I’ve felt before many ER visits and in so many moments of unrelenting pain. It literally feels like your body is telling you “this is the end.” This Lyme is a beast.

First responders came and assessed the situation, took my vitals and since they were all registering normal they wanted me to sit up, but I couldn’t on my own. Trev and I both knew I needed to get to the hospital, understanding how vicious this disease is and how quickly things can change.

Trev firmly told them a couple of times that I needed to go now, but since my vitals looked fine they were clearly in no hurry. Shortly after they had sat me up, the ambulance arrived and the paramedics loaded me up. They were so kind, asking if I wanted the blanket and pillow from the couch and I’m so very glad they did. The next few days they were my constant source of comfort.

We arrived at the hospital and I was assessed, hooked up to an iv and heart monitor, had a blood draw and at 20 minutes after arriving at the hospital I looked at Trevin and said “I think I’m going to pass out again.” I then began to close my eyes.

A moment later he watched my heart rate drop…34…. 25…. ———.

Everything flat-lined.

The nurse, who was thankfully with me in the moment, jumped on my bed and began CPR. He called out for help and within seconds there were 5, 6, 7 people surrounding the bed and pushing Trevin out of the way.

Within a minute the nurse had my heart going again and all I remember was waking up to about 5-6 faces around me, attaching what felt like 50 cords, an oxygen mask, and a second IV (which I promptly told the nurse I didn’t like, but it didn’t change her mind).

After a couple minutes of them asking me questions to keep me alert and monitoring my vitals, I started looking for Trev. When I didn’t see him I asked if he was nearby. He approached the bed and I could see the tears in his eyes. I had no idea what had happened – I’ve passed out many times in the last few years and really thought I had just woken up from that.

The first things he said were “I’m here. You can’t do that to me again” with a hand squeeze and a kiss. He then told me my heart had stopped, but it didn’t sink in until a few moments later. That feeling is indescribable. My heart had stopped. At 28 years old.

The Moment Lyme Took My Breath Away

I was in the ICU from Monday to Wednesday and then was finally moved to a lower level of cardiac care for my final day. I went through so many tests, poking, specialists, tears, visitors, advice, concern, so.much.pain and sleepless nights over those few days. It felt like I was in there for a month.

Most doctors don’t believe in chronic Lyme’s existence so it was an emotional week of navigating difficult conversations with doctors who are doing and advising what they believe is best for me, but have little to no open mind about chronic Lyme disease.

It’s not that they don’t believe LYME exists. It’s that they believe a short course of antibiotics solves the problem, when it doesn’t. That my body couldn’t STILL have Lyme, even if I DIDN’T get the right course of antibiotics after a bite (which I didn’t).

But that’s where chronic Lyme disease begins to develop, something they don’t believe is possible. I know Lyme is what I have and I won’t let a doctor convince me otherwise because I care too much about my health.

Lyme is commonly misunderstood by the medical community, leaving patients like me fighting for their life. This is my story of when Lyme took my breath away. | Living Grace Blog

This post may not seem relevant to you if you’re not fighting Lyme disease, but I hope my story causes you pause. I don’t wish this on anyone, yet it could happen to any of you reading. This monstrous disease came from the tiniest bite ever.

Please, please take precaution when you are outdoors. Find a tick + mosquito repellent spray and tuck those pants into your socks when you’re hiking. Check yourself, your dogs, and your kids before coming inside. Learn how to properly remove a tick, as well as get testing immediately.

As I write this, I am living in Orange County and two weeks ago I found a tick crawling on my dog. While I can’t be certain if it had Lyme disease, the fact is IT COULD. To think it has to be a deer tick, in the woods, on the east coast as the CDC wants us to believe, is unfortunately being naive. Ticks travel, pets travel, we travel – and many patients with Lyme don’t even recall their tick bite. Some didn’t have a rash and symptoms wouldn’t appear for years.

If I can spare another person from living this nightmare, I will. I won’t keep my voice quiet, no matter how many doctors cause me to cry over standing up for myself and my health. No matter how many people look at me like I’m making up every symptom I daily fight for my life through. No matter how many years us Lymies wait and fight for change in the system. I’ll still be here, as long as God allows, fighting for change however my body is able.

Since leaving the hospital, I’ve had a couple of scares reminiscent of the moments leading up to my heart stopping, which has caused us to take precautions to make sure I’m not alone.

My mom has come down from northern California to help out for a few weeks during the hours Trev is at work. It’s quite humbling at 28 to need a “sitter”, but we are truly blessed we have family to help out. Between both of our mothers we know we have help in a heartbeat whenever and however they can.

There are only a few days left of Lyme Disease awareness month and I want to challenge YOU, readers + family + friends, one last time to take part in the Lyme Disease Challenge. It’s simple, easy, and supports a great cause – the education of doctors in Lyme disease diagnosis, treatment and care.

Snap a selfie of you biting a lime, share a fact about Lyme disease, and then pass it on to 3 other people. Eat dinner at home and donate $10 to ILADS.

lymediseasechallenge

Think GREEN these last few days of May, readers. And hug those loved ones just a little bit tighter.

XO
Kami

Check out these other posts...

31 comments

  1. Wow, Kami!!! I am so glad that you are still here, and sharing your story. I am glad that you shared that you are in OC, and that it is not just an east coast disease.

    I am down in San Diego and treating with a doc here. It is a horrible disease.

  2. plus+beauty27 says:

    This is such a moving post Kami! I am so glad you’re okay! You’re one brave and very strong woman! <3 <3 xo

  3. Lindsey says:

    Prayers coming your way! <3
    My family & I actually think my mom had Lyme disease. She was deathly sick a few years back, & doctors couldn't figure out what was causing it. She would just lay around the house and could hardly move. Then she started getting muscle wasting in her upper arms (We even thought she had MS at one point). After about a year & a half she started feeling better, and more recently she has started feeling like her old self again. Her muscles in her arm haven't returned, but we are just happy she can function again.
    I'm sorry you have this. We had such a hard time finding doctors who believed in Lyme, or even thought it could be chronic. I hope you can get the help & answers you need!
    ~Lindsey~

    • Kami Lingren says:

      Aww, I’m so sorry to hear your mom has fought this awful disease. I’m glad to hear she has been experiencing improvement and will pray it continues for her. I was originally diagnose with MS, too and treated for that for years. So many of us misdiagnosed! Hugs to you and your mama. Thanks for reading and commenting, Lindsey! ❤

  4. stephieestie says:

    I’m so sorry Kami. I knew the little you told me. You’re right. As much as I do have respect for the scientific community and trust them, I also do believe that you know your body better than anyone else and no one can tell you otherwise. You know, for the most part leading up to the diagnosis of IC, I myself even began to think I was crazy but there were these little signs I took as from God that kept pushing me to keep pushing an insisting. A year and a half later is when I finally learned what I had after all that pain is. Keep going and keep praying and I will too. When you feel better, we should meet up-we’re so close. 🙂

    • Kami Lingren says:

      You are so sweet, Stephanie. Thanks for the prayers and encouragement! It sounds like your journey is very similar to mine in finding your diagnosis. I agree with your respect and trust of the scientific community as well as being our own advocate. God designed our bodies so intelligently and without listening to our bodies who knows how much longer we would have waited for answers. So glad you have your answer, too! I’d love a meet up once I’m better 🙂 You’re a true kindred spirit! <3

  5. kfdodge says:

    Thank you, Kami, for posting your issues with Lyme. For all of us that fight this daily battle, I personally get great solace knowing I’m not alone. You are a rockstar for fighting so hard! Keep it up and best wishes to you and yours.

    • Kami Lingren says:

      It is so comforting to know there are others who totally understand this journey, right?! Thanks so much for stopping by, reading and commenting. From one Lymie warrior to another, HUGS!! <3

  6. Pingback: ROCKSBOX: June 2nd unboxing | living grace
  7. Pingback: one month later, my heart’s still got the beats. | living grace
  8. Lori Geurin says:

    Kami,

    What an incredible, heart-wrenching story you have to share. I’m so sorry you had to go through this, but thankful you’re here to write about it.

    I’ve had Lyme disease for almost 4 years now and was in the ER, again, this week, so I can totally relate to some of your experiences with mainstream doctors.

    Your call to action is on point. We must stand together against this horrific disease and continue fighting for appropriate medical care and a cure.

    Thanks for sharing your story!

    • kamilingren says:

      Lori,

      My heart is always grieved to hear of another having to fight this awful disease. I’m so sorry you had to visit the ER again this past week. I hope you are doing better this weekend. The stamina and strength this fight requires are not for the faint of heart! Sending hugs.

      Thanks for reaching out to connect! I’m checking out your blog next. 😉 XO

  9. Veronica says:

    For years ive been told its fibro. So i have fibro. 🙁 ive had fiffferent stages and cognitive issues. Most days im just tired. I liste d to your podcast today and i wrote three pages of notes!
    Thank you.

    • Kami says:

      Hi Veronica. Thanks for reading and commenting. I’m so sorry you’ve been fighting your own battle, too. I know others who fight fibro and it’s so brutal. Thinking of you and praying for you on your journey. Thanks for listening to the podcast! Im glad it could touch you in some way. sending hugs!

  10. Betsy says:

    Kami – have you read the book Medical Medium by Andrew William? I too fight chronic illness caused by a severe reaction to a fluoroquinolone antibiotic called ciprofloxacin and I have a very strong faith. I found the book helpful in my struggle to regain my health. Thank you for sharing your story and I pray you find your path to healing.

    • Kami says:

      Hi Betsy, I’m not sure I’ve heard of the book. I’m so glad it was helpful for you! It sounds like you’ve had your own strong fight for wellness and I pray you continue to find the healing you’re working so hard for too! Thanks so much for reading and taking the time to leave a comment.

Leave a Reply

Your email address will not be published. Required fields are marked *