A glimpse into my life with Lyme

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Until now, I’ve avoided going into a lot of detail about my symptoms and how limited my daily activities have become as a result of my Lyme infection. Chances are, even if you were one of my closest friends you wouldn’t know a lot about the pains and discomforts I experience on any given day. I don’t like to share much about what I’m going through, partly because talking about and focusing on my symptoms only brings them more to mind, and I don’t want to give this disease any more power than it has already gained over my life. The other part of me acts out of pride. Big, ugly pride. I don’t want people to think I’m weak, and I most certainly don’t want anyone to feel sorry for me. The goal of this blog has always been to help spread awareness about Lyme and to encourage readers to be thankful for good health by fostering healthy lifestyle and dietary habits. The last thing I want is to evoke pity.

I hesitate to share how ugly this disease has been in my own life for all of the aforementioned reasons, but I’ve come to realize that my story is one worth sharing. Most people don’t understand or have the ability to comprehend the level of illness that Lyme can cause. There is a general misunderstanding about chronic illness, and I know it can be confusing to outsiders, but with this blog I have an opportunity to share a glimpse of what my life has been like for the past few years. Even though it’s the last thing I want to do, I feel somewhat obligated to share my experiences, the good, the bad, and the ugly. So I’m putting my pride aside to share a small piece of my story with you. If you are struggling with Lyme or another chronic illness, then know that you’re not alone in your suffering. If you are in perfect health, then rejoice, and educate yourself so that you have compassion enough to hear the voices of those who suffer.

“Put yourself in the shoes of the one who’s suffering and do for them what you would want done for you.” -Dr. Richard Horowitz

Before I was diagnosed with Lyme I was living and working in NYC. Even though I pursued countless doctors while I was there, I was never helped by even one of them, and I eventually became so ill that I couldn’t leave my apt on my own. I stayed curled up in my tiny East Village studio with disabling pain, fatigue, insomnia, nausea, diarrhea, dizziness, numbness and tingling, and anxiety. This is the state I was in when I finally came down to Texas to live with my parents a year and a half ago. I was so sure that once I was in Texas, in a bigger house with a mom, that I would feel better. For about a week it appeared that all I needed was a breath of fresh air away from rotting garbage and swarms of people, but that was short lived, and I soon got worse. Much worse. All of the previously stated symptoms became heightened, my muscle and nerve pain became scary intense, and I was unbearably nauseous and dizzy. For two solid weeks I stayed in my parent’s dark bedroom all day long because I was so sensitive to light and sound. At night, when it was dark enough, I would come out to the living room and lay on the couch in the dark, oftentimes listening to nothing but static in my noise canceling headphones and being very careful not to move much so as to keep the nausea at bay. During this time I rediscovered my love for NPR and audio books, as they were my only source of entertainment. The only thing I can think to compare my overall symptom picture to is this: imagine being hungover and having the flu, a migraine, and a stomach bug all at the same time, then multiply that times 5. That’s how I felt constantly for about 6 weeks until little by little, the symptoms began to ease up. This was one of the lowest points in my illness.

After I finally received my Lyme diagnosis in July of 2012, I was fortunate to quickly get an appointment with the only Lyme Literate MD in Texas. From this point, things began to turn up for a bit, but as is so common with this disease, the upward turn didn’t last too long. Living with Lyme is such a rollercoaster ride, you never know what symptoms you’ll wake up with, and sometimes I think dealing with the constant onset and offset of symptoms is more frustrating than anything. People expect that healing should happen on an upward slope- you start down at the bottom and work your way up to a higher level of health as treatment progresses over months and years. Treating Lyme doesn’t always work that way though, it would be oh so nice if it did, but it oftentimes feels like one step forward, two steps back, and sort of resembles the picture below.

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There have been so many low points, set backs, and bad drug reactions throughout my journey. During these low points I tell myself that it’s all part of the process, but when you’re in tears and writhing with pain, it’s hard to care about the process. There have been many times when I have literally had to crawl from one room to another. My mom has come home to find me lying by the toilet, too sick, dizzy, and exhausted to even turn my head. I keep an ice pack on my head 75% of the time because of severe headaches. I’ve been hospitalized twice and have been to the ER more times than I can count. I’ve had so much pain that I didn’t think it was possible to survive. Some of my closest comrades are two microwaveable heating pads and one electric heating pad, I’m using all of them as I type this. I’ve had menstrual pain like you wouldn’t believe- pain that should only be felt when producing a child. Sometimes I don’t have enough energy for a 10 minute conversation. I can’t even attempt to explain the level of fatigue that accompanies this disease, saying that I am extremely fatigued doesn’t even begin to cover it. I have to crawl up the stairs to my bed every night, as walking up is too painful. I require a wheelchair for my doctor appointments because walking more than about 30 feet at a time causes immense pain. It’s a rare occasion when I leave the house for anything besides a doctor appointment. I could go on…

Even in the midst of the pain and loss that I continue to cope with daily, I know that there are so many others who are much more sick than I am. There are those confined to a wheelchair 100% of the time. Some suffer from seizures, others from severe malnutrition because their digestive system has simply quit working. Some cannot feed, bath, or get dressed on their own. Many have had multiple surgeries on organs that have simply shut down. Others have lost their lives. In the words of Dr. Steven Harris, “… truly, people with Lyme are some of the sickest people on the planet, and treatment regimens are some of the most complex that I can imagine in medicine. I have had patients on up to fifty different medications and over one hundred and fifty herbs at different times during their treatment.

20131205-161946.jpg (I spend a lot of time at Lab Corp)

20131205-161937.jpg (my wheels)

20131205-162003.jpg (doctor’s office selfie because I actually got dressed)

Lyme Disease is a complex and difficult disease to treat. I know that healing will take time, with the exception of a miracle. I know that eventually I will be well, but I want to be well now. Writing this is a bit cathartic because there are so many moments when I can’t believe that this is my life. I still don’t fully comprehend how I got here. I always ate relatively healthily, exercised regularly, and have never had any major medical issues (until Lyme of course). I had goals and dreams for my life when it was interrupted by Lyme. I had planned on spending my twenties traveling, giving, loving, getting married, and living in a city that invigorates me. Instead, my days are spent on the couch chugging pills and tinctures, concocting a careful diet plan, and painting my nails when I feel well enough. Rather than delighting in doing my hair and makeup and selecting just the right heels for my favorite skirt, I live in a uniform of Nike shorts and sweatshirts. The number of times that I’ve worn even a little bit of mascara and blush this past year can be counted on [less than] one hand, and I literally have not fully blow dried my hair since March of 2012 (yes, I remember). Instead of shopping, hanging out in bars and coffee shops, or going to concerts, I spend my time researching Lyme treatments. Unfortunately (or fortunately), a lot of my social interactions occur online through forums and social media where I have found others who struggle in the same way I do with this disease. No, this is not the life that I had planned. This most certainly is not God’s best for me. Some days the injustice of it all really gets me down, it’s just not fair, life shouldn’t be riddled with pain and depressing circumstances. When these thoughts begin to enter my mind I try not to let them hang around long enough to make me sad, mad, or bitter. Instead I think about the promises that God has given us, to me, His child. One of my favorite verses is in 2 Corinthians 4:17, it always gives me instant peace and joy.

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4:17, 18 NIV)

In light of this promise, my suffering and pain doesn’t seem quite as permanent, and the condition of the world doesn’t seem quite so scary. I will leave you with this quote by C.S. Lewis and truly believe in these words. I know that my pain will not be wasted.

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XX, K

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33 thoughts on “A glimpse into my life with Lyme

  1. Kayla,
    I’m a little teary reading this. I am so sorry. Your attitude about this is amazing and inspiring. You could easily be angry and bitter. Please keep posting and pushing on. Praying for you in Oklahoma!

  2. Kayla,

    I’ve enjoyed reading your blog. You write extremely well. I’m sorry you have to go through this awful disease! You have a great attitude about it and that certainly will help you get through this.

    • L&L- I’m so glad you enjoyed it, I think that in one way or another every Lyme patient can relate to what I wrote about this illness, but I definitely wasn’t expecting to receive so many notes and comments from fellow sufferers. I guess what I said needed to be said, for those in the Lyme community as well as for the general public. Hope you are doing well on your journey! XX.

  3. Bless your heart for sharing. I wish all the best for you in this horrible struggle. You WILL get through it to a better place. My daughter is going through this now and I am so sad for her and for you.

      • I noticed that one of your top symptoms is anxiety- that would probably explain why you’re so nervous! Haha. Oh Lyme. I completely understand, I was absolutely terrified when I received my diagnosis because I knew that healing meant feeling worse before I felt better and I simply could not imagine feeling any worse than I already did! It sounds like you’re in very good hands though, and I have come to realize that Herxing too much is only going to cause more damage (ie inflammation), and we really don’t have to do that to ourselves to regain our health. Also, it may somehow seem like I am very brave and courageous for sharing my story, but I assure you that I’m not. It’s okay to feel scared sometimes, and it’s okay not to have it all figured out. Just don’t stay in a state of fear, share your feelings with someone and then try to let them go. You WILL get past this! Stay strong. XX.

  4. Hi:) I’m wondering if you have tried a functional medicine doctor yet in your path to healing?? And have you been checked for heavy metals in your body yet or a mthfr mutation on your genes? Look both these up if you haven’t already I hope they can be helpful in your process of healing. Praying for a full recovery for you!

    • Hi Nicole! Thank you for your recommendations. I haven’t been able to find a functional medicine doctor in Texas who understands Lyme, although I think it would be really helpful to do some muscle testing. I do have a functional medicine doctor who helps me with a few different things, but honestly, he hasn’t been super helpful. I actually got my blood tested for an MTHFR mutation a few days ago, and in excited to see what those results yield because I have suspected that I may not be detoxing optimally. All of my best to you!

  5. I am so sorry you are going through this girl. I am praying for you. I am so inspired by your faith. God has a plan in all of this. I just know it!! Love you.

  6. Hi Kayla. Thank you for sharing those words. I can imagine you feel a little better writing them and sending them out and away from your enclosed world? I know it probably took a lot to even feel like doing that. How can you possibly put across what is happening to you in a blog? I think you did very very well. I have long term Lyme too and I think the most important thing is support, understanding and encouragement during any long term illness, and especially through the cruel and testing trials of Lyme. If you ever want to get in touch I have just started a facebook page called Lyme NT (I’m in the Northern Territory in Australia). Keep focusing forwards to better times, you will reach them. Hannah x

    • Hi Hannah! Thank you for your kind words and encouragement- you are so sweet. You’re right, even though it was a tough post to write, I do feel better knowing that my pain is being used for a greater good, which is awareness and possibly helping people who can relate to my experiences.

      I just found your FB page and am following you now, so we can stay in touch. Good for you for doing that! Also- do you have an Instagram account? There are lots of Lyme patients on there, and it’s a good place to connect with people who are facing the same struggles that you are.

      Take care! XX.

  7. Great article Kayla! Greeting as from Ottawa, Canada. Sending you Light and Love. Your writing has inspired me and no doubt touched many others with your message of faith in the Divine Plan. We flow with it and then we fly! Hugs, Maureen.

    • Right now my main Lyme doctor is Dr. Elize St. Charles in California. Since I’m not well enough to travel, I do phone consults with her. Are you in Texas? Feel free to email me if you need some names of doctors here….

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