Friends with Lyme: Kaylie

I can’t remember the last time I saw Kaylie. We went to school together, so it was probably some time after we graduated from high school in 2007. Consequently, our class recently had its 10-year reunion. I couldn’t go because I have Lyme disease and ME/CFS, which makes it impossible for me to get around my house, let alone travel. But I did catch glimpses of the event on social media.

I’ll admit I was a little bummed not to be there, but at some point in my sullen mood, I realized that I wasn’t the only one missing out. Lots of people skipped the reunion. Kaylie was one of them.

Like me, Kaylie has Lyme disease. She has been finding her way through treatment for the disease, which I’ve been watching on her Instagram stories. This is where she regularly documents her battle with Lyme, as well as shares some amazing recipes from her website. The recipes follow Autoimmune Protocol (AIP), a viable way to reduce inflammation in the body through diet. Of her many recipes, I highly recommend the Almond-less Joys — a delectable combination of coconut and dark chocolate.

In reconnecting on social media, I became curious about Kaylie’s experiences with Lyme. So I thought I’d share some of the questions I asked her about living with the disease and chronic illness in general.

Kaylie had some really introspective responses to my questions. I would have liked to ask follow-up questions, but it’s hard to go back and forth online. That said, Kaylie will likely be reading this post, so please ask any follow-up questions you have in the comments section and hopefully she’ll respond.

Q1: When were you diagnosed with Lyme? What was that process like for you?

For years I always felt like something was off but I could never put my finger on what it was exactly. I was diagnosed with Lyme in the beginning of 2017. I first went to see a Naturopathic doctor in 2016 who was more concerned with my hormones and never really looked into the possibility of infections or Lyme. My symptoms never improved with this doctor and I felt like there was a lot more that needed to be uncovered. After spending about a year with this doctor (and a lot of money), I went searching for someone who would serve me better. I went to see a primary care doctor, a Chinese medicine doctor, an endocrinologist, and finally landed with a functional medicine doctor. With this doctor, I felt like I could finally breathe, like I was in the hands of someone who believed all of my symptoms and understood what was happening to me. I am now in the middle of treatment and my symptoms have begun to improve but I know I still have a long road ahead of me.

Q2: Do you remember any tick bites in your past?

I don’t remember any tick bites or the typical bullseye rash. However, I have found plenty of ticks crawling on me over the years. I’ve always been a very outdoorsy person; hiking and being in the mountains. My guess is that I was bit years ago but didn’t start showing symptoms until my immune system was compromised due to mold exposure, stress, gut issues and childhood trauma.

Q3: From what I remember, you were very active in high school — you ran cross country and always did well in PE. Now I see from your Instagram stories that you’ve been struggling with being less active as you battle chronic illness. How has living with a chronic illness affected your perception of both people struggling with illness and healthy people with boundless energy to exercise and enjoy life to the fullest?

Yes, I have been active my entire life. I played softball, basketball, soccer and ran track and cross country. In college, I turned to weight lifting and fell in love with it. After college I started doing Crossfit and did my fair share of obstacle races and 24 hour running races. I loved being active, it gave me confidence, helped me cope with many different stressful times in my life and really defined who I was. The day came where I couldn’t work out any more because my fatigue was so bad.

My perception has changed since becoming ill. I am a lot more understanding toward those who can’t exercise or do physical activities. Before, I would judge others who weren’t active and think that they were lazy. That is simply not true. I feel compassion for other people who are struggling with chronic illnesses and I understand the pain and loneliness that can come from it. In contrast, I feel envious of those people who have boundless energy, but I feel grateful that I know what that feels like. I have had energy before and I truly believe I will have it again. I have also come to realize that you can’t take movement for granted.

Q4: Do you consider yourself a person with a disability?

No. I don’t think I would ever consider myself a person with a disability. Maybe it’s pride or maybe, if I think that, then I would believe it and if I believe it, then I have accepted defeat by my illness. I am fortunate to still be able to live my life, even though it might not be how I want it to be. I realize that I can do simple everyday tasks and I am thankful for that. I do need to rely on my husband more than I ever have and even thought. I am someone who never likes to ask for help, I have become okay with voicing my need for extra support.

Q5:  Before I got sick I had been in a doctor’s office a handful of times, maybe. Then when I became sick I underwent a tough learning curve. Eight years later, I’m still trying to wrap my head around all the medications and medical theories relating to my illness. Have you experienced any difficulties learning about Lyme and navigating a health care system that gives very little attention to it?

Oh man, it sure has been confusing and there is definitely a learning curve. Just like you, I never went to the doctor. I think I only went to get physicals to be able to play in school sports. I feel like I am a little different than other people when it comes to chronic Lyme and healthcare. I first learned that I had Lyme from my functional medicine doctor, the doctor that I see now. Also my functional medicine doctor is an infectious disease doctor, so that helps a lot. I have never once felt like my symptoms were dismissed or like Lyme wasn’t a real issue. I feel really fortunate because I have heard other people having a lot of issues when it comes to western medicine and Lyme. I truly believe in functional medicine because it treats the patients as a whole being instead of just treating symptoms of disease.

A few things before you go:

1. Thank you for reading! Please check out Kaylie’s website and follow her on Instagram for lots of great AIP recipes and products.

2. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!

3. If you would like to donate to support this blog I would be equally grateful!

A Personal Plea To Protest 

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I’ve never been one to protest, well, unless you count not shopping at a certain large retail store whose name rhymes with Falmart. So what I’m about to ask of anyone reading this might seem a bit hypocritical. But that’s okay, I’m gonna ask anyway.

Those of you who have been privy to my struggle with ME/CFS for the last six years probably didn’t know how bad things would get, I certainly didn’t. It’s a dangerous, scary, and misunderstood disease that not only needs more awareness, it also needs more private and government research funding.

Before I got sick I would have given priority to a disease like Parkinson’s or MS, but now I know the exact serious of MECFS; it nearly killed me. For that reason I ask you and anyone you are willing to share this post with, to donate to one of the amazing organizations busting their butt to better understand this mysterious disease. I personally recommend the Open Medicine Foundation or Blue Ribbon Foundation. Both are at the forefront of what needs to change in our healthcare system in order to cure MECFS.

Lastly, and perhaps most importantly in the immediate, is protesting on September 27th. This Tuesday people from all over the world will unite as part of the Millions Missing campaign. 25 cities scattered around the globe will feature protests. Here in the U.S., protests will be held everywhere from Boston and D.C. to Seattle and San Francisco (City Hall at 11 am). It is expected to be the largest and most widespread MECFS protest ever. I hope you will participate. If not for the cause itself, then for me or one of the many lives this horrible disease has tainted. In many cases, including my own current situation, attending the protest is physically impossible. That’s why we need your help.

Now I’m not asking you to kneel during the national anthem, or to stop eating solid food for 18 months, I’m merely asking you to be present for 10 minutes out of your day. And if you can’t make it to protest in one of the major cities, perhaps you can do something in your hometown like tie a blue ribbon to your car or mailbox, or sport a bracelet on your wrist.

At the very least, I hope you will take a few seconds on Tuesday to first remember how much this disease truly sucks, and then to post a message on your social media accounts using the Millions Missing hashtag (#MillionsMissing).

For any or all of the aforementioned participation I thank you in advance. It is these tiny gestures that appeal to my emotions and touch me the most.

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A One Man Nudist Colony 

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I was completely naked for the better part of an entire year. I wore no clothes. None.  Now, before you file this post away on your “too much information” (TMI) blacklist, first let me promise to keep the intimate stuff to a minimum. That being said, some stuff may be unavoidably revealed. It’s kind of inevitable when talking about being naked.

What people don’t often realize, and perhaps they don’t want to, is that sick people spend a ridiculous amount of time naked. Why? It feels sexy. No, I’m joking (although it does feel a little sexy). There are actually a number of legitimate reasons. Putting on clothes can take a lot of energy, muscle strength, flexibility, and joint mobility. In my case, an obscenely impaired blood pressure and blood volume made it nearly impossible for me to move my body enough to get clothing over my head let alone my extremities.

Another reason is hygiene. Even if I was able to get clothes on my body, the physical repercussions would have been so intense it’s safe to say those clothes wouldn’t have come off until I had regained my strength days, or even weeks later. And that, of course, would mean bathing with clothing on, which I’m not sure if you’ve tried, but it’s just about the least amount of fun you can have with clothes on, and is also probably the least amount of fun you can have while bathing. How do I know, you ask? Oh, I tried it. A few times. And I stubbornly learned that bathing with clothes on, and then leaving them on, is undeniably more miserable than smelling like a dumpster for a week.

I also briefly tried wearing button down shirts. I soon ran into the trouble of getting my arms through the sleeves, so I had someone cut the sleeves off a bunch of old Tommy Bahama shirts from the thrift store. And just like that I looked like Rick “Wild Thing” Vaughn from the movie Major league, rocking a sleeveless tuxedo. Unfortunately it was the tacky floral patterned shirts made for middle aged men that ultimately turned me away, and I soon returned to my life as a nudist.

So I resolved to remain in my own personal nudist colony for a few more months until IV treatments helped my blood pressure, and in turn, allowed me to finally keep some damn clothes on. And I have to say it felt really good. I felt like a human again. So every day after washing up, I would struggle to get a pair of boxers around my hips. This was particularly difficult because I couldn’t lift my hips off the mattress.

I should say, however, prior to resuming my life as a clothed person, I did occasionally allow visitors into my den of nudism. But these guests, fortunately or not, were always wearing clothes. And sorry to ruin the facade, but I was almost always covered by a sheet. Darn.

Still, even in the moment, the ridiculousness of the situation was ripe and often very comical. Once, during a visit from someone very special, I felt the need to have a little fun. No, not that kind of fun. Get your mind out of the gutter. The visitor was a good friend from college, during which time we had a running joke about helping each other bleach a certain unmentionable body part notorious for getting soiled. You don’t like where this is going, do you? Yeah sorry, so much for leaving out the intimate stuff. Maybe I’m the one who needs to get his head out of the gutter.

So my buddy arrived, and naturally the first words out of his mouth were, “Hey man! I’m here for the bleaching.” Now, normally I would have gone with the joke and immediately simulated getting undressed while telling him I was ready for the procedure, but there were two problems: I couldn’t talk and I was already naked. So instead I shifted the sheet off my upper thigh, and then, after five solid minutes of tracing letters on his hand, I was able to convey that I was already naked and ready for the bleaching. “Bring on the bleach!” I said.

Ha hmm. Anyway, where was I going with that story again? Yes, right, I was naked for a year. But recently I started feeling better and I’m once again back to wearing clothes. I have discovered linen shorts, which are just about the comfiest things, besides pajamas, that I’ve ever worn. And I’ve found that my old tank tops from the gym are much easier to get on than a normal t-shirt or, say, a Tommy Bahama shirt with pink hibiscuses.

Overall, I must say, it’s wonderful to wear clothes again. Why? It feels sexy, of course.