the moment Lyme took my breath away.

sympathy gifts

sooo, right after I commit to making more of an effort here on the blog, I disappear for a couple of weeks. allow me to share the reason why…

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 how quickly he was 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, Tooka, 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 and 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, I’m telling you.

first responders came and assessed the situation, took my vitals and since they were all 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, knowing 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 normal they were clearly in no hurry. shortly after they had sat me up, the ambulance arrived and the paramedics loaded me up. they asked 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 – it’s really the simple things for this girl!

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”, followed by closing 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 faces around me, attaching what felt like 50 cords, an oxygen mask, and a second IV (which I promptly told the nurse “I don’t like it”, 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.

coping with Lyme diseaseI 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 – though there’s a grave misunderstanding about where you can contract the disease – it’s that they believe a course of antibiotics solves the problem, when it doesn’t. that’s where chronic Lyme disease develops, which they don’t believe occurs). I know Lyme is what I have and I won’t let a doctor convince me otherwise.

#lymedontkillmyvibe

#lymedontkillmyvibe

to any of you readers who have felt safe believing what the CDC and mainstream medicine declares about chronic Lyme disease, I hope my story causes you pause. I don’t wish this on anyone. this monstrous disease came from the tiniest bite ever. please, please take precaution when you are out of the house. 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 and learn how to properly remove a tick, as well as get testing immediately. I live in Orange County and two weeks ago I found a tick crawling on my dog. no, I don’t know if it had Lyme disease, but the fact is IT COULD. and I live in the city, people! 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, didn’t have a rash, and symptoms didn’t appear for years.

this is probably my least flowery post ever, but I care way too much about my fellow man to be silent about my suffering – 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. at least for a few weeks while we monitor my health and discuss our options. my sweet mama 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 who would 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. you take a bite (and a photo or video documenting the act), share a fact about Lyme disease, and then pass it on to 3 other people, and then donate $10 to ILADS. if you participate, I’d love for you to tag me in your post so I can see! you can find me on Facebook + Instagram.

lymediseasechallenge

think GREEN these last few days of May. and hug those loved ones just a little bit tighter.

XO
Kami

20 thoughts on “the moment Lyme took my breath away.

  1. 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!! ❀

  2. 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. πŸ™‚

    • 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 πŸ™‚ You’re a true kindred spirit! ❀

  3. Lindsey says:

    Prayers coming your way! ❀
    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. 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! ❀ ❀ xo

  5. The Person Next to You says:

    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.

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