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Shop the Lyme gift guide for apparel & accessories that spread hope & awareness! Click for more.

A Lyme Support & Awareness Gift Guide

Today I am beyond excited to share the creative work of some of the most fierce and lovely ladies I’ve been lucky enough to “meet” in the Lyme community. Their stories, talents, and vision all funnel toward the same positive message. And it is one of hope, courage, and compassion.

The wonder of the internet is that though I’ve never sat down and had coffee with any of these ladies, they’ve each had an impact on me. As they’ve shared their healing journeys and creative work, their strength and light have inspired and challenged me in some of the moments I needed it most. And I’m thrilled to share some love for them and their amazing talent here in this Lyme gift guide!

I’ve asked each of them to share a look at what led them to create their pieces, so enjoy hearing from the creators themselves!

Lauren Lovejoy
Lyme Warrior

Lyme Warrior Lyme Won't Sink Me V Neck and Warrior Bracelet

Lyme Warrior is a group of volunteers raising funds for Lyme research. With Lyme Disease being widely disregarded by the medical field, it is up to us to find a cure. It is one thing to fight for what’s right, but it takes amazing people to fight for what’s right while fighting Lyme.

You can find the Lyme Warrior shop here!

Melissa Cox
Lyme Don’t Kill My Vibe

Lyme Don't Kill My Vibe Unisex Tee and Flowy Yoga Tank

As an extension of my blog, Lipstick Warpaint, I created #LymeDontKillMyVibe, a hashtag primarily used on Instagram to spread positivity and awareness surrounding Lyme and associated conditions. The original design + slogan was created in 2014 almost 1 year after I was diagnosed with Lyme. At that time, there were very limited Lyme awareness apparel options that felt truly empowering.

I’m a huge hip hop fan and the slogan just came to me one day while listening to Kendrick Lamar’s “B*tch Don’t Kill My Vibe” back in 2013. It became a near-daily mantra, and one day I decided THIS needs to be a thing. I now have a second edition design which was created in December 2016 with the help of my Lyme fightin’ entrepreneur friend Elise Graham. What I love most about Lyme Don’t Kill My Vibe is it encompasses both strength and community. There are over 25,000 posts on Instagram with the hashtag alone, and it feels like such a positive step toward reclaiming what healing means.

You can purchase them (with new items being added this summer!) at Lipstickwarpaint.org/shop or find me on Etsy

Kerissa B.
Tx Stitch

Lyme Disease Sucks Pin by TX Stitch

I never really felt like I was a creative person before Lyme. There’s something about being forced to be in bed that made my hands feel idle. I started cross stitching and created an Etsy shop and slowly expanded to have exactly 1 patch and 1 pin. I wanted to create something Lyme related that was simple but really told people that it’s not a great thing to have. Thus, the pin was born.

Kacie Fleming
Katya Valera Jewelry

Katya Valera Jewelry Rising Above Lyme Bar Necklace & Frame Necklace Collection

I’d been a fan of Kami’s RAL (Rising Above Lyme) phrase and shirt line since she first released the shirts a while back. Being the spontaneous creative that I am, the idea of collaborating with her for some RAL jewelry flashed through my brain one day, and I jumped right in and contacted her with my idea. Thankfully she loved it, and thus began a good couple months of planning and work!

Originally I envisioned frame necklaces that feature text images designed by Kami, and then I developed the idea for a piece that visually represents the phrase—the bar necklace. We then added a minimalist, very lime wedge-style piece, and the collection was complete. I’m so grateful to have gotten to work with Kami on this collection and to be able to help inspire and encourage others who are on a similar journey.

Shop Katya Valera here!

Chloe O’Neill
More Than Lyme

More Than Lyme Keep on Keepin' On Tee and Canvas Tote

No matter where you are right now, know that you are enough. No matter how scared you feel, know that you are not alone. No matter how often you feel like giving up, remember that you are strong enough to have made it this far, so why not choose to keep on keepin’ on?

Why not take all the adventures you’ve gone on, mishaps you’ve had, and pain you endured, and use them to create a full and happy life for yourself? A life where no matter how hard things have been, or are going to be, you know that tomorrow will be worth it. You know that you are worth it.

You know that you are enough.

Regardless of where you’re at, what you’re doing, or how you feel, remember that you’re more than your doubts, your fears, and illness that hides beneath your skin.

Click to shop MTL! A code that people can use for 15% off is SHAREYOURSTORY. 

Kami Lingren
Rising Above Lyme

Rising Above Lyme Tee and Graceful & Fierce Tank from Living Grace Shop. Click to shop!

Hey, that’s me! 😉 Last year I had the phrase “Rising Above Lyme” on repeat in the back of my mind. Partly because I think it’s so easy to find ourselves consumed by our health challenges. And understandably so. But I didn’t want my story to be solely defined as “sick”. So I created a shirt that would remind me that my life’s purpose and worth are not defined by my circumstances. Rather, by my conscious effort to engage my life in spite of them. And I wanted the message to inspire and validate others who were fiercely healing as well!

This year I added the Graceful and Fierce design, which I feel resonates so deeply with the essence I strive for. To fiercely love, heal, advocate and show compassion, but to also be gentle with ourselves and others as we live, learn and heal. And what a beautiful thing it is to embrace both in our lives.

You can find the entire Living Grace collection hereAnd use code RISING this month for 15% off your order!

Have you been dreaming of creating something to help raise awareness and hope? I hope this Lyme gift guide inspires you to embrace that dream and make it a reality!

Lyme Creatives Gift Guide for spreading Lyme disease awareness and support! Click to shop items created BY women healing from Lyme FOR others also healing!
Lyme Awareness Wear: Gifts and Apparel for those healing from Lyme Disease. Click to check out all of these amazing creatives!

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After spending years chronically ill I began researching the DNRS program as a natural alternative to healing. I've seen great results and am sharing 3 important questions I've been asked - and answering them! Want to know more? Click here to learn more about how the treatment works!

3 Things You Should Know About DNRS

This is not a sponsored post. These opinions are entirely my own and are in no way endorsed by the Dynamic Neural Retraining System.

If you read my post last week, you know that over the course of the last six weeks I’ve been adding in a brand new treatment. And it’s a program that’s, well…outside of the box.

It doesn’t come in the form of capsules. Or an injection. And it doesn’t involve a device, for that matter.

Because this treatment, interestingly enough, can’t actually be seen.

Sure, the information and instructions for DNRS (Dynamic Neural Retraining System) are delivered in the form of a DVD series and a personal workbook. So there’s something tangible you have in hand as you’re learning. But implementing the program involves working on/with your brain.

Which means it’s a lot of internal work.

The techniques presented in this program are based on research surrounding neuroplasticity. Which, in short, refers to the brain’s unique ability to change itself. Wild, right?

So today I thought I’d answer some of the questions that I’ve been asked the most since starting DNRS:

  1. What is DNRS?
  2. How would retraining the brain help current health challenges?
  3. Is it worth the $250+ investment?

These are all questions I’ve asked before starting the program so you’re not alone! Information on healing through neuroplasticity is still relatively new to me, but I’ve been seeing profound shifts begin since starting DNRS.

So how about we just tackle these one by one?

What the heck is DNRS?

As I mentioned before, the program arrives at your door with a set of DVDs and a personal workbook. You’re encouraged to complete the program (which consists of 14+ hours of material) in 4 days in order to get the most benefit, but I’ll be honest: it took me a bit longer. But I gave myself some grace and, as I’ve shared, am still seeing positive shifts in my health.

In a nutshell, the DNRS program aims to first educate you in the science behind neuroplasticity and then equip you with both the tools and techniques to help you repair your limbic system.

I wasn’t familiar with the limbic system prior to this treatment program. So in case you’re like me and your thoughts are starting to drift toward what you’ll be eating for lunch, let’s quickly cover the basics.

The limbic system consists of several parts of the brain including the hypothalamus, hippocampus, amygdala and cingulate cortex. Together, these structures make up the “feeling and reacting” functions of the brain.

Now if the limbic system is impaired due to injury or trauma (whether that’s an infection, chemical exposure, mold toxicity, emotional or physical trauma, etc) it becomes hypersensitive. And in this hypersensitive state it will overreact to even the smallest stimuli that would otherwise be passed over as harmless.

Since our limbic system works intimately with our endocrine, autonomic and immune systems, it inappropriately activates those systems which can end up in a “party” of symptoms we never invited.

The DNRS program gives you a system to implement that will help rewire the limbic system so that it’s once again functioning properly. The treatment you implement includes both daily brain exercises you work on throughout each day and one hour of devoted time of “practice”. Practice each day involves a combination of mild movement, vocal exercises, and mindfulness techniques – all to help restructure the pathways in the brain.

I obviously can’t share exactly what the practice outlines for you to do each day, but something that may be helpful to talk about is the reality that I was very limited before starting this. And even I was able to implement these practices in the beginning. Sometimes I just had to do it in an abbreviated way, such as lying down or sitting during a portion of the daily one-hour of practice.

Want to learn more about the Dynamic Neural Retraining System? After years of treatments, doctors, and way too many years spent home-bound this method is helping me HEAL! Click to read more as I'm responding to my 3 most asked questions about the program.

 

How would retraining my brain help my current health challenges?

Great question! And one I asked over and over again before purchasing the program.

One of my first thoughts upon looking further into the program was that it seemed like everyone was “drinking the Kool-Aid.” But heck, I was desperate. And if  the Kool-Aid actually worked, I couldn’t care less about the modality. I just wanted to be better!

And while I am getting better, this most definitely is not brain washing. (Or sugary Kool-Aid for anyone wondering). There was an important distinction I knew I needed to make early on in the program. As I learned more about the brain and neuroplasticity it became clear I had to treat my brain just like I was treating my body.

My magnesium has been regularly low for years now, which is why my naturopath has been supporting my body’s diet with magnesium supplements. My blood pressure has also been regularly low, so I frequently drank Himalayan salt water to help keep it from dipping too far.

So for me, it was helpful to view my efforts in neuroplasticity retraining as working with the organ of the brain.

As in: utilizing my mind to retrain my brain’s pathways. And while a huge part of this program is working with your thoughts, it’s more specifically working with the thoughts/messages your brain is inappropriately sending.

The aim is to redirect the neurons that are firing incorrectly (i.e. sending symptom and pain signals) so that over time they are no longer wired with the same old pathways. The outcome is rewiring the brain with new, healing pathways so the limbic system can be properly functioning once again. Which results in lessening symptoms!

I’ve heard all sorts of “just think positive” mantras and over these past years of health struggles they’ve felt like a big ball of blame. The message received was “you’re not positive enough, therefore it’s your fault you aren’t getting better.” And I don’t buy that one bit.

Any mindset shifts I’ve experienced (or been able to set in motion) in this program have been a direct result of experiencing tangible healing. Meaning: literally feeling a difference in my brain and body. It’s been like a fog has been slowly lifting. A fog I simply did not invite or entertain. Because believe me, I wanted all of the symptoms and discomfort GONE. 

This program isn’t about just thinking positive, but rather learning how to communicate with your brain to help it reach wholeness. And what I’m finding with each passing week is that I do feel lighter. Even happier, but genuinely so. And it coincides with the healing that’s begun in my brain and body.

How did I decide it was worth the $250+ investment?

First off, I can tell you one thing that didn’t help me decide: a guarantee I would get better. Because there wasn’t one. I knew that just like every other treatment I tried, no one could tell me this would 100% work for me.

But the following things really did help.

    1. A money-back guarantee. This was a first for me. We have shoveled out tens of thousands of dollars, much of which we fundraised, to pay for treatments over the years. Never once have we seen this. If you commit to the program for the full 6 months and don’t see significant improvement, they’ll refund you. That’s quite a statement of belief in their program!
    2. It’s really not that expensive. I probably don’t need to say more after what I just said about “tens of thousands”, right? But in case you need a further statement: $250 doesn’t begin to touch how much my supplements cost us right now each month. If getting me better means being able to go off of those, it’s well worth it.
    3. The research speaks for itself. The more I’ve studied about neuroplasticity through the program (and now after), it JUST MAKES SENSE. Variations of the techniques in this program have been proven effective in so many others. Want to be really amazed? Watch this TED talk given by Dr. Jill Bolte Taylor who suffered a stroke and talks about her experience and neuroplastic healing.

The following contains affiliate links which means that if you purchase something through one of these links I may receive a commission – at no extra cost to you. As a reminder, I only promote things I have personally tried or believe are beneficial. Any commissions earned help me keep this blog running. So, thanks! 🙂

You don’t have to take my word for it. Learn more yourself!

Since starting the program I’ve had a craving for learning more about the brain, specifically neuroplasticity. So I have a running list of the books I’d like to read and recently checked out my first one from our local library by Dr. Norman Doidge, called The Brain’s Way of Healing. I’ve just started and already it’s a fascinating and helpful read! I also plan to read his first neuroplasticity book, The Brain that Changes Itself.

Since watching the TED talk video I mentioned earlier I’ve been eyeing Jill Bolte Taylor’s book, My Stroke of Insight, for a future read also. Because after watching her tell her story I just have to know more!

Finally, of course, the Dynamic Neural Retraining System’s website contains more information about both the program and understanding the science behind their approach. And it’s a great way to check it out more before deciding if it makes sense to purchase the program for yourself. Let me know if you do! I’d love to connect.

Have you read any books on Neuroplasticity? Have you done the DNRS program or something similar? I’d love to hear your thoughts!

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How the DNRS Program is Helping Me Heal

If you’ve been following me here for awhile, you know that here in this blog-space I share the grit and guts of what I’ve experienced in the realm of the sick life. But if you’d like to catch up on my story to understand how powerful the news I’m about to share is feel free to check out this post. It’ll give you a look at what used to be an average day-in-the-life for me. Don’t worry, I’ll wait right here til you’re done…

Ready? Okay.

So a little over a year ago I met a doctor through a friend and my goodness has she been a godsend to me. Quite frankly, I believe she is one of two doctors that has helped keep me alive. Well, them and a nurse who quite literally gave me back my life in 2015.

Through her care I’ve seen some beginning signs of improvement as well as experiencing a much lower # of ER visits (1). But I’ve still been largely home bound. Weak. Frail. Experiencing way too many symptoms to be normal. She was feeling hopeful that by the year’s end I’d see some marked change. And I tried my best to hope with her.

But then I was sent a message from an Instagram friend that told me I needed to check out the DNRS (Dynamic Neural Retraining System) program. She said it had completely changed her life and since our stories were so similar I thought I should at least look into it.

So I clicked over to the website and began to read. My first response was honestly, an eye roll. “‘Retrain the brain’? Do they think this is all in my head? This sounds like another load of positivity B.S. So…I’m outta here.” I replied to the friend with a thanks, but this just isn’t for me. And I thought that was it.

But it KEPT. POPPING. UP.

A few weeks after I said ‘no thanks’ it popped up again. Then a couple days later a friend messaged me about it, asking if I’d heard of it. Call it what you will: a sign from the universe, or God, or my own body/brain trying to send me a message, but I just couldn’t get away from it.

So I looked at the website again. I watched tons of the testimonial videos as well as a presentation by the creator of the program, Annie Hopper. Her story, though different than my own, also held so many similarities. And she confirmed what I knew to be true: this illness is NOT all in our heads. So I softened.

I felt like her heart was compassionate toward others who had gone through what she had. And her incredible story was this: I learned to retrain my brain and I healed myself.

That’s quite a bold statement, no? So I looked at the price of the program and I talked it over with Trevin. A couple weeks later I had the DVD program in hand. It came right after I’d finished running my very first workshop with some of the readers here at Living Grace. The timing felt perfect.

Have you heard of the DNRS program based on the research of neuroplasticity? It's a fascinating program that is helping me heal from years of chronic illness. To read more of my one month update, click here!

I entered the DNRS program with a lot of skepticism.

I just feel like you should know that. It definitely wasn’t as if I bought into this deal right off the bat. But there were some aspects of the research I found online surrounding the brain’s ability to change itself (neuroplasticity) that I couldn’t ignore. And seeing how it had helped so many others similar to me gave me enough hope to give it a shot.

The program is designed to help you rewire your limbic system so that it builds more functional neural pathways. As I learned more about the brain and limbic system in this program, the cause and effect of why I continued to grow sicker or only experience small amounts of relief started to make more sense.

In the DVDs Annie explains that when the brain experiences various forms of trauma, whether that’s viral, physical, emotional or otherwise,  a maladapted stress response can be triggered. Essentially that means that our brain’s instincts to protect us get kicked into overdrive, leading our limbic system into a constant state of fight or flight mode.

And how on earth could I get better if my brain constantly thinks it’s under attack?!

This video documentary on neuroplasticity is quite fascinating if you’re interested in understanding more. (Just feel free to ignore the creepy music.) Variations of these concepts have been proven effective in the treatment of physical injuries, such as stroke patients or those who have suffered brain damage. And it’s also helped those who have suffered psychological PTSD or have OCD. 

Next week I’ll be unpacking a bit more about neuroplasticity and the design of the program, but until then you can also check out the website to watch some tutorials and read up on the science behind it. (<—that’s my affiliate link, which means I may earn a small commission if you click on it and purchase the program. As a reminder, I only share things I’ve either tried or believe in the value of. In this case: I’ve tried it and it’s helping me heal!)

My one-month improvements:

I’ve been on the program for just 4 weeks now and the changes in that short period of time have been quite amazing. Especially when Trev and I compare it to the life I’ve been living the last few years. And while I have more healing to work towards, I’m truly grateful for these beginning signs of healing.

As a pre-cursor to my improvements here’s a list of most of my diagnoses: Lyme, Bartonella, Babesia, Mold Illness, Heavy Metal Toxicity, Fibromyalgia, Chronic Fatigue Syndrome, MTHFR genetic mutation and POTS).

  • I’ve gone from barely being able to walk a couple blocks on a very good day to walking almost daily the last week+.
  • My fatigue levels used to be at an average of 7-9 every day (on a scale of 10 being “I can’t move”) and now my levels are averaging below 5 consistently.
  • The inflammation and joint pain I’ve consistently lived with hasn’t been this low in over 4 years.
  • My strength is slowly growing and my litmus test is being able to do the dishes almost daily. They used to sit an average or 2 days before I could get through another round.
  • Dizziness used to be one of my most debilitating symptoms. Now? It’s at an all time low also.

The healing process continues…

There continue to be new things that pop up and surprise me as I continue to commit myself to the program and work toward further healing. And in my commitment to the program, this post will be one of my last to mention diagnoses or symptoms for awhile. It’s a necessary part of retraining my brain in this critical stage of early healing.

Guys, I’m not going to sugar coat it for you: this treatment is not easy. But then again none of what I’d done for healing has been. Seeing improvements and feeling genuine hope is most certainly worth sticking with it.

With all that said, I feel so happy to share that I believe I’m in the process of healing. And while I believe in God, I’m going to keep my feelings on this experience ultra-real for you: this is not something that I’ve seen sprinkled down magically into my life. 

I’ve fought for this. For years.

I’ve committed myself to countless supportive supplements, doctor’s appointments, injections, blood draws, detox, nourishing myself, gripping onto my pebbles of hope, so-much-waiting and now I continue to reach for healing with this program. (And I continue to maintain my supplement protocol under my current doctor’s care while on the program).

So I’ll leave you with this one-month update and hope that this program may also help some of you sweet struggling ones on your own healing path. To reclaim your own health. To heal your brain’s limbic system. And begin to see yourself able to dream again… of living a healthy life, of travel, and of pursuing the things you’ve been waiting for.

Have you heard of DNRS before? Or tried it? Have questions you want me to answer in another post? Drop your thoughts below in the comments! I’d love to hear from you. 🙂

As a heads up: I’ll be largely taking a break from my Facebook page indefinitely, so if you want to stay in touch be sure to sign up for my email list. Or connect with me on Instagram!

 

*Disclosure: This post contains affiliate links. That means that if you purchase through one of these links, I may receive a small commission (at no extra cost to you). Thanks for supporting this blog and my health!

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Do you feel 'stuck' as someone who lives with chronic illness? Do you feel like there's no way to change your current situation? Today Kerry Heckman is sharing her thoughts and experience on making positive changes that have helped her heal. Click here to read the full post!

How to Make Changes in Order to Heal

Do you feel 'stuck' with pushing through the pain of chronic illness? Never feeling like you'll ever get better? Kerry Heckman is sharing her story of leaving her full time job and the healing that it's brought her. Click here to read her full story!

This post contains affiliate links, which means if you purchase through one of these links I may receive a small commission at no extra cost to you. This helps me keep this blog running so thank you!

Today’s guest post is written by Kerry J Heckman of Body Mind Lyme.

In her book Mind Over Medicine, author and doctor Lissa Rankin discusses how she changed her patient interview process. She used to ask patients about symptoms. Then, she started asking patients, “What do you need in order to heal?” The answers surprised her and changed the way she practiced medicine. People started saying things like, “I need to quit my job,” “I need to leave my relationship,” etc.

Often times there is a voice in the back of our mind telling us we need to change something. For me that voice started many years before my diagnosis.

It told me I needed to leave my job. I was working as a school social worker with mountains of work and heavy responsibility. I ignored it and kept pushing myself and pushing myself, ultimately making myself sick.

The Lyme disease, which I’d most likely had since childhood, came out of remission. Then, I no longer had a choice. It was either me or the job. There is no doubt in my mind that if I had stayed at my job I would’ve ended up on disability. My body just couldn’t handle the level of commitment that was expected.

Making changes…

I know the response many people have when they hear this; they say, “I can’t quit my job.” Lyme disease treatment is outrageously expensive and most insurance companies won’t reimburse doctors for treatment, so we are stuck paying out of pocket. I completely understand that leaving a job is not possible for many Lyme patients, many of whom live on the brink of poverty.

If you can’t leave your job or make the other major changes you need to heal right now, it’s about finding small ways in which you can work toward the changes. The voice inside my head started telling me I need to leave my job five years before I actually made it happen.

Taking small steps is okay.

You don’t have to quit your job, move across the country, or leave your unhealthy relationship today, but it may help to take some time to think about what it is that you really need in order to heal. Start thinking about small steps you can take to move toward that place.

Can you make a commitment to updating your resume, or make an appointment for couples counseling? Can you make a Pinterest board of the place you want to live and research home prices in the area? At the very least can you start a 5 minute a day meditation practice in order to start listening to yourself and asking the question, what do I need heal?

One of the first small changes I needed to make was to change my belief system. I needed to go from looking at my illness as a terrible thing that was thrust upon me, to a message. My illness was here to tell me something and I could either listen and make changes, or I could fight against it live a place of anger postponing the healing process. I started to get quiet and really listen.

“Find a new forest.”

Sometimes we think we are completely stuck in our circumstances, and that we are out of options. My personal belief system is that is never true. There is always a teeny tiny adjustment we can make (even if it is just in our attitude), which can tip the scales in our favor. A wise person once told me that I needed to get out of the forest I was in, because all I could see were the trees that were already there. I needed to find a new forest, so I could see new trees, and new possibilities.

Quitting the job I thought I would have forever was the scariest thing I’ve ever had to do – scarier than the MRIs, the hundreds of needles, and the swabs shoved up my nose. Now every day I wake up and know that I chose myself, I chose my healing, and I made the right choice.

Kerry can be found over on her blog, Body Mind Lyme, where she aims to create a positive space for those healing from Lyme disease and other invisible illnesses. She’s a contributor on the Global Lyme Alliance blog, as well as the websites Lymeology and The Mighty.

You can also connect with her on the following social media outlets: Twitter Facebook | Instagram | Pinterest

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Chronic Illness has a way of turning every day tasks upside down. I've set out on a mission to find items that will help make my life, and even pain management, at least a bit easier. Click to read more about my top 5 favorite gadgets for making the day to day of illness more manageable.

5 Useful Gadgets That Actually Make A Difference For Me

 

*This post contains affiliate links. Your purchases through these links help keep this blog running, so thank you!*

Chronic illness has single-handedly turned my health and day-to-day into a jigsaw puzzle. From navigating all my symptoms to pain management, life looks much different for me these last few years.

Normal things that I used to never think twice about, I have to plan for (or around) in order to make them possible. A myriad of other adjustments have had to happen.

I subconsciously (and sometimes vocally…color me weird) ask myself questions that I never did before. “Can I load the dishwasher today?” “How much will my body have to pay for taking a shower right now…can I still make dinner after?”

Some symptoms are harder to manage than others. Managing pain can often feel like playing hide and seek with a ghost. Fatigue is another beast that’s really hard to wrangle.

But for some of my symptoms, I’ve found tools – aids, if you will – that make my life just a bit easier. And that little bit means a whole lot to this girl! From saving me effort to supporting me (literally), these have become my must-haves for navigating my day-to-day. All while living with a list of diagnoses I’m working hard to heal.

Update: I’ve actually been able to stop using some of these wonderful aides after starting a program called DNRS that has helped me begin to heal! You can catch up here.

Slim-Fit Earplugs

Do you suffer from sound sensitivity? These slim fit earplugs have been a godsend for me! Super soft and comfortable on sensitive skin, too. Click to read more about these and other handy gadgets I use to help me navigate chronic pain and symptoms!

One of my top 5 most debilitating symptoms might surprise the healthy, but for those who live with sensitivities YOU FEEL ME. I’m not talking about emotional sensitivities, but sensory. I’m highly sensitive to noises, some triggering me more than others.

The simple sound of plastic crumpling, glasses tinking, or the faucet running, for instance feels like someone is taking a bristled bottle brush, adding electricity and shoving it through both ears. Yeah, it’s fun. With continued healing I’m confident this symptom will get better, but for now: earplugs are a must!

These slim-fit earplugs by Mack were recommended to me by a dear friend who uses them for the same purpose. And boy are they a godsend! They’re smaller than regular earplugs which makes them more comfortable for me. The set of 10 even comes with a travel tube so I can always have them on hand and easy to find in my bag!

Neck pillow

A couple of years ago I noticed that my head and neck pain would consistently rise in the car. Once I realized how much having neck support would help, Trev picked up a basic neck pillow for me. I was amazed at the difference it made!

As with anything I’ve purchased to help me manage my day-to-day, this doesn’t remove my pain, but it makes riding in the car more manageable. Even short rides used to spike my pain more than they do now that I have that bit of support.

I actually attach my neck pillow to our headrest in the passenger seat by turning it backwards and “hugging” the top portion. Not all seats will allow this, but thankfully the design of ours does. It feels more comfortable to me that way.

Walking Cane

Healing with a chronic illness looks different for every person and every illness. But through the process of healing and treating, we can find ways to offer support and relief to our overwhelmed bodies. Click here to check out my top 5 tools that have made a difference for me!

 

If you follow me here or on social media you may already know this, but I like to name things. My oxygen concentrator is formally known as O2D2 (I grew up watching Star Wars with my siblings, can you tell?). So I couldn’t help myself to name my cane Hugo. It was easy since his tag said so.

My husband suggested I get one that had more than one pod on the bottom for extra stability since my balance varies from day to day. And, as he would smile and tell you – I wasn’t thrilled with that idea. Oh vanity. As if four prongs somehow makes my cane more noticeable. 😉

I found this one and thought it was a perfect fit. And after using it for over six months now I can say I’m so happy I went for the quadpod version. It gets a good grip on the surface and the handle has enough traction that your hand is not likely to slip. I even used it in a snow-packed icy parking lot recently, while also being supported by Trev on the other side and it worked really well supporting my weak side.

Pill Organizer

This is, by far, the BEST pill organizer out there. Each day's doses are in individual containers which makes it easy to grab and go to doctor's appointments, meals out, and a day or two of travel. Soft silicone lids make for easy opening on arthritic hands. Click to read more about this and 4 other handy gadgets that have actually helped me LIVE, even if in small ways, in spite of chronic illness.

Okay, I’ve been raving about this since I bought it so I HAD to include it here. I saw someone share the link for it in one of my Lyme support groups and I loved it at first sight. I’m a romantic, after all.

Why was I willing to drop $35 for a pill organizer, you ask? Because I was confident it would make my pill routine easier. From accidental missed doses, to opening pill bottles every day with sensitive hands, to packing meds for travel – I saw this as a huge help. And it has been just that.

Its soft silicone lids make it ultra easy for opening and the ‘x’ opening easy for sliding in each day’s supplements. My hands are so much happier! Not to mention individual containers make for easy access when you have a meal you’re eating out or a day or two of travel. Since I’ve already sorted out the week’s doses, it’s just grab and go! This had made for less occurrences of late or missed doses which is always a positive.

Motion Sickness Bands

For a year and a half, nausea was a frequent – if not constant – companion to me on this healing road. I’ve always had motion sickness, but this was different. And it grew worse when coupled with driving.

I always ride in the front seat and I’m pretty cautious about anyone else driving besides Trev because of how sensitive my bod is. He’s the only one who knows just how fast things can turn for me.

Motion sickness bands like these made by Sea Band have actually helped this for me. It took me a bit to figure out the right spot for the pressure point, but once I did I noticed a difference. You do need to put them on at the start of the car ride, I’ve learned – and adjust them if you’re not feeling the benefit.

Be gentle with yourself.

In the chronic life there are many things we can’t change immediately. Healing that doesn’t come overnight. But if we can take even a bit of the burden off by making a few aspects lighter, why not?!

You’ve just heard my top 5 current faves for navigating my day-to-day symptoms so now I want to hear yours! What is your favorite(s) pain/symptom/make life easier gadget?? Let me know in the comments!

Have you snagged your copy of the FIVE gifts to give yourself when going through a hard time? Be sure to download yours here.

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Susan's novel, The Last Letter, is a story for the brave souls fighting Lyme disease. But it's also for their families - to gain understanding and insight into the struggles of their loved one.

Meet the Author: Susan Pogorzelski & The Last Letter

A few weeks back I had an email drop in my inbox from the lovely Susan Pogorzelksi, a Lyme author who released her book, The Last Letter back in September. She offered to send me a copy of her book and I am so happy to now share the love with another Lymie!

I asked if she would join me here on the blog to share a bit of herself and the passion behind her book and she happily agreed to have me interview her. Having her here with us today is such a treat and I hope you enjoy connecting with her story and passion. She is such a light for the Lyme community!

Meet Susan

I invited Susan onto the blog to share more about her book, The Last Letter, a fictional reflection of her personal journey fighting Lyme disease.

Thanks so much for joining us on the blog today, Susan!

Thanks for having me, Kami! It’s a pleasure!

When did you first start writing?

When I was in kindergarten, my best friend and I would recite stories to our teacher, who would then write them down for us. We’d illustrate them with rudimentary crayon drawings and make covers out of cardboard and contact paper, punching holes in the sides to bind them with metal rings. These were our first books.

I think I knew then that there was something special about books–about the stories within the pages and the magic they create. I was fascinated by the fact that I could play a part in that–actually, I still am! It’s nice to know that feeling has always been with me.

Have you always wanted to be a writer?

Writing wasn’t my professional goal until I think I was in middle school–when I learned that was something people could choose. It was just always something I did, a part of who I was.

When I was younger, I was a voracious reader, and my stories emulated what I was reading at the time: I wrote mysteries after consuming the books in the Fear Street series. I wrote a book about a group of friends who were runaways after reading survivalist/dystopian books by Scott O’Dell and Lois Lowry (stories which will never see the light of day!).

But then when I was around twelve or thirteen, I discovered A Tree Grows in Brooklyn and coming-of-age literature, and I was hooked. I learned that I could use writing as an outlet to figure out what I was thinking and feeling–to figure out life–and stories became that much more powerful. I think that’s when I decided I wanted to be an author. I wanted to be able to share a part of myself in that way.

I’ve started reading the copy of The Last Letter you sent me and am finding it such an intriguing approach to sharing about Lyme. Can you describe the book to readers?

Written as a series of letters between 1999 and 2003, The Last Letter is a coming-of-age story about Lia Lenelli, a teenage girl struggling to shape her own identity while a chronic illness threatens to tear her world apart. While the book is primarily a work of fiction, it’s a semi-autobiographical account of my own struggle to find a diagnosis and subsequent recovery from Lyme Disease, particularly the emotional toll that having such an illness can take.

From Susan: "I realized that fiction could be the perfect conduit to help those with Lyme feel like they’re not alone while bringing awareness to an illness that is so easily (and dangerously) dismissed."

What made you decide to write the book as fiction as opposed to an autobiography of your Lyme journey?

I’ve been blogging and journaling about my own journey through Lyme since I was first diagnosed in 2012 (and through fifteen years of misdiagnosis before that) but never had any intentions of publishing a book on the subject, despite prompts from friends and family to share my story–a story I know thousands of people can relate to.

Whenever I did consider it, I couldn’t bring myself to write–I felt like I’d already said what I wanted to say and what was left, I didn’t have words for. But then in 2014, right after I reached remission, I wrote the beginning of what would be the first draft of The Last Letter: a letter from a teenager named Amelia to a stranger, to be placed in a time capsule as a reminder that she had once existed. I didn’t know where it was leading, and so I put it aside.

The idea of leaving something behind as a reminder that I had once lived–the idea of legacy, identity, and survival–began to haunt me, especially considering what I’d been through with Lyme. And so, as I began to write more, I realized that I could tell my story–our story–in a way that provided some emotional relief while really exploring these themes.

As I’ve been reading the book I’ve thought of how hard it can be for us to revisit moments of our past when we are fighting illness. Whether it’s a moment of pain or even a memory of not being sick, they can be hard to relive. Did you struggle with this when writing this story?

This is so true and part of why it was necessary for me to craft my story around a fictional narrative. I think life has a way of anesthetizing our experiences–once you’re healthy, you forget what the worst of it was like, how bad it really was when you were sick.

When I went into remission, I thought I’d put Lyme behind me, but then in early 2015, I had a severe relapse from which I’m still recovering. I knew what I’d been through before, but I was so eager to move on with my life, I’d forgotten how bad it was until I found myself back there again.

Writing this book through my relapse made me not only remember that pain, but it forced me to confront it. Fiction provided enough of a distance that I could do so safely.

I read my book the other day for the first time since the release. I wanted to read it objectively–not as the writer or as an editor with a critical eye, but as a reader. I’ll admit, it was hard.

Because now that time has passed and I’m slowly getting better, I’m again forgetting all those days when I couldn’t lift my head from the pillow, or when I writhed from the pain in my legs, or how I fought for every word when I was writing the book because my neurological issues were so bad, I had only brief pockets of clarity before the fog took over.

Because I was writing the book as fiction, I could lie to myself and pretend it was Amelia’s story. Now I’m reminded that it was mine–that it’s all of ours in some way or another–because everything Lia experiences both symptomatically and emotionally is what I’ve experienced, too.

That’s always the hardest part: knowing how much truth there is even in fiction. But there’s also a sense of pride there. Because reliving those experiences, I’m reminded of what I survived–that I did it once, and I can do it again. It’s what keeps pushing me forward in recovery.

What do you hope readers experience when reading your book?

Part of the reason I chose fiction for this story is because fiction is a powerful form of storytelling. When you’re reading a memoir, the thought that this is someone else’s story is still lingering in the back of your mind.

But when you read fiction, you become the characters–you think, feel, and experience what they do. I realized that fiction could be the perfect conduit to help those with Lyme feel like they’re not alone while bringing awareness to an illness that is so easily (and dangerously) dismissed.

That’s all I could ever want for this book–for it to help someone. For someone to recognize themselves in it and know they’re not alone in their suffering–that there are people who are fighting along with them.

And for those who don’t have Lyme, I hope it brings to light what those with Lyme endure on a daily basis and why we need support, acceptance, and unconditional love more than ever.

What’s next for you? Are there dreams you have for 2017?

It’s been a long journey through recovery, so I’m hoping to keep getting better so I can be in a position where I can be of service to people. On the Lyme front, I’m hoping to do a lot more as far as advocacy and building awareness, especially when it comes to healing emotionally from this illness.

I’m not sure what that looks like yet, but I’m happy to be playing a small part by contributing my writing on The Mighty and the Global Lyme Alliance blog. I’m also working on my next novel, which I hope to release next fall.

Is there anything else you’d like the readers to know?

If I could speak directly: I want you to know I think you’re some of the bravest, most inspiring people I’ve ever met. This disease is ruthless, and it often feels lonely and isolating and like no one understands. To be able to face that takes so much strength and so much courage, and I hope more than anything that you’re able to recognize that strength and courage in yourself.

This Lyme community is something truly special. When you cry, someone is there to dry your tears. When you fall, others lift you up. When you feel weak, we’ll remind you that we’re fighting with you. Please don’t ever forget that you have people on your side and that you’re so much stronger than this disease makes you feel. Stay strong. Be brave.

And to you, Kami: Thank you for being such a strong voice in the Lyme community! It’s been a pleasure getting to know you, and I’m grateful for this opportunity to share my book.


A big thank you to Susan for joining me for this interview. And for being a voice of hope and compassion to Lyme sufferers around the globe. Your story is one that so many can relate to and find comfort in the reminder they’re not alone.

You can find Susan’s Lyme book, The Last Letter on Amazon and other online book retailers. Or you can purchase signed paperback copies on Susan’s website

To connect with Susan, look for her on the following social media outlets:

Twitter | Instagram | and Facebook at her page Lost in the Lymelight, a community focused on healing from the emotional impacts of Lyme disease.

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"How beautiful it is when together, with arms linked, we rise."

This is Where Hope and Reality Coexist

Awhile ago I designed this shirt and it sat in my files. It sat because I was unsure of what it really meant to me.

Why were these words the ones that settled into my heart? I feel like I’m doing anything but rising above. I sit on the couch the majority of my days. And if I’m lucky I’ll sit on my porch for a few minutes.

I spend my time detoxing, treating, resting, treating, resting, detoxing, Netflixing, and treating again. I load the dishwasher as my biggest task many days.

I cry tears. Lots of them. I ask questions I don’t have answers to, feel deeply and ache hard.

But ‘rising above’?

I more often feel like I’m barely hovering below (whatever that means…let’s just go with it). I think of how slow my days are. How deeply I feel the weight of this intense struggle with Lyme. And I don’t view myself as exceptionally positive or optimistic. In fact, lately I’ve described my feelings as “meh”.

Yet these words kept coming back: Rising Above Lyme.  For weeks I wrestled with them until their truth sank in deep.

These words echoed in my heart for weeks before I officially released the t-shirt design. When the truth of the words "rising above" fully sank in, it wasn't at all what I expected.

‘Rising above’ doesn’t mean we disconnect from our reality. It doesn’t mean we cover up the scars, deflect, or pretend the hard isn’t there. That the trauma, the memories, the fear or the pain doesn’t exist.

Rising above can simply say: I will breathe in this moment of laughter, however rare it is.

I will appreciate and give back to the new friendships I’ve found in the midst of this sick life. I’ll choose to be real and honest, even when it’s hard.

Rising above can happen from our couches, our sick beds, our pile of tears tangled up with the layers of illness.

Because this is not the “positivity train”. This is where reality and hope coexist in even the smallest of moments. 

We rise when wrapping arms around another who needs someone to hope FOR them, WITH them.

We rise in the moments we advocate for the voiceless, the oppressed, the marginalized.

We rise when we listen to our body’s need for rest, for nutrients, for treatment.

We rise when we open our eyes to see someone that’s different than us with kind, compassionate eyes.

And how beautiful it is when together, with arms linked, we rise.

Rising Above Lyme: The story behind these words that have settled deep within my soul.

I designed this shirt to promote Lyme disease awareness as well as another to offer a universal “Rising Above” design that can be worn by anyone. You can see all of my designs and grab your very own here!

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Understanding the Complexities of Lyme Disease: A guest series by Genevieve Goetz

Understanding Lyme Disease (Part One)

Today I’ve invited my friend and fellow Lyme warrior, Genevieve, onto the blog to facilitate a series on understanding Lyme disease. The complexities of this illness often leave many friends, family, medical practitioners confused or in disbelief about the realities Lyme patients live with. So our goal with this series is to unpack the facts of the beast that is Lyme disease and raise awareness for the many warriors across the globe.

By Genevieve Goetz

My journey in life drastically changed when I was diagnosed with Chronic Lyme Disease. I currently live in the beautiful, rural Hudson Valley of NY. Besides writing, I love to garden and grow my own food. Being in nature is so healing for me. I have been practicing yoga for years, and have been teaching for over four years. I am trained in Vinyasa and Prenatal, and love to teach in unusual places like a nonprofit conference room, a government housing center, universities, and farms. But I also love the traditional studio setting.

I traveled for most of my twenties, lots of time in New England/New York area, Hawaii, Japan, and Philly (my hometown). I studied Creative Writing and Photography at a small university, and now due to my illness, I am really using my writing skills and passion, and receiving great feedback and publishings. Having my pieces out there online helps me connect to a great community of fellow Lyme Warriors, who inspire me to continue on my path.

An Intro to the Lyme life…

Lyme patients have to not only take on the burden of healing a disease, they have to constantly explain things they don’t even understand. Not all Lyme patients know how the body works, so going through such a scary medical experience for a long time can be detrimental to improving health. Doctors have their own language, so it is easy to not understand.

The interweaving of your body systems may be a mystery to you. People may even tell you this disease doesn’t even exist.

I started studying Occupational Therapy about two years ago. I took two semesters of Anatomy and Physiology, and Physical Pathology, Medical Terminology, and Kinesiology. Since my Lyme diagnosis and three years prior of misdiagnosing, I have had to put school on pause. But the knowledge stayed with me because I was experiencing such a severe, chronic illness and want to heal.

My experience as a Yoga Teacher and student of Occupational Therapy has given me knowledge on how to survive during these drastic times. Exploring what yoga poses aid and assist in my treatment, practicing deep breathing techniques, and having a mat to center myself has been a blessing. Learning how to create patient-centered treatment plans from an Occupational Therapy perspective has helped me create my own goals and consistent lifestyle of quality healing.

Because of my research, I can determine if scientific theories are coming from a true medical research background, or are just plain false. Having the knowledge on how my own body works has given me great clarity during flare ups and other extreme situations. It’s also helped me keep up with doctor “lingo”, even in the worst of pain.

How does Lyme work? Genevieve Goetz unpacks the basics of Lyme disease in part one of this series.

So what is Lyme disease?

There is so much contradicting information, that it’s hard to put the puzzle pieces together on how this all works. Lyme Disease is transmitted when an infected deer tick bites a person and inputs infectious bacteria, such as Borrelia burgdorferi and Borrelia mayonii, into the person’s bloodstream and tissues. There are many different strains or species of Lyme bacteria, along with other coinfections, that can be passed from a tick bite.

Spirochetes form and grow into a large, thick spiral shape. They attach to any cell in the infected person’s body, enter the cell, and cause a release of digestive enzymes so the cell dies. Then the spirochete can act as the former cell of the host, by wearing the outer cell lining of the initial (now dead) cell. The body’s immune system will check it out, recognize this outer layer as a regular cell and allow the spirochete to grow and travel. Thus spirochetes mimic any system of the body, which leads to a lot of misdiagnoses.

Chronic Lyme can go into remission, once enough Lyme cells are killed and toxins processed out of the body. But this disease is forever, so always check up with your doctor or specialist. Spirochetes survive in the host for a long time. So even when the symptoms disappear, not all of the spirochetes leave your body. It’s also important to note that Lymies should not donate blood or be organ donors.

Readers, the next article’s topic is up to you! What medical questions do you have? What do you need clarity on, or would like some real discussion on? Please send us your questions through this form and we’ll answer in the next article! Thank you so much!

Connect with Genevieve:
www.GenevieveGoetz.com
Email | Twitter | Instagram

For some starter resources on understanding Lyme and prevention visit my Lyme Disease resource page.

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There is a silent epidemic sweeping the globe that medical institutions are failing to recognize. Meg's story is just one of thousands who are slipping through the cracks in our healthcare system. Read her story to be informed and spare yourself and your family from this life of suffering with chronic Lyme disease.

Being Misinformed Led to the Fight of My Life

*Please be aware this post contains a use of profanity.*

A few weeks ago, one of my fellow Lyme warriors and readers reached out to see if I’d be willing to share her story. Due to the nature of this illness Meg and I share, thousands of patients go without diagnosis (or are misdiagnosed) for years due to the gross misunderstanding of this disease. She and I hold the same passion for raising awareness and her piece is a powerful extension of that. It is raw, heart-wrenching and real…and an important message for us all to hear. 

Written by Meg Walling

Many people know of Lyme Disease. Maybe you’ve heard of it, or know some general information about it. You probably think you’d know if you had it, right? I know that’s what I thought. Wrong. You probably think that if you go to the doctor and they test you for it, you’re all set, right? I know that’s what I thought. Wrong.

I have chronic tick-borne diseases, generally referred to as chronic Lyme disease. But as all those with chronic Lyme know, it’s not just Borrelia (Lyme) and co-infections. It’s also a multitude of systems in your body that have been attacked and caused to be dysfunctional.

Lyme, with its screw-like nature, has the ability to invade every nook and cranny of your body. It can literally drill through – and into – whatever it desires. These complex, multi-systemic, immunosuppressive diseases corrupt and wreak havoc like nothing I would have ever imagined.

Now, imagine it.

Let me take you back, and tell you a piece of a story about a 20 year old girl. A girl that grew up with loads of dreams, a crazy sense of humor, and in love with nature and country life. Hardworking to the core, she held onto the belief that love was always the answer, and honesty, trustworthiness, and helping people was the best kind of foundation. That part of being strong meant not showing your weaknesses.

At 20, this girl should have been coming into the prime of her life…

It was December, she was just finishing a semester at college and had a wonderful trip slated for the near future. However, she got sick a couple weeks before the semester’s end, with symptoms that mimicked a viral infection. Sore throat, swollen glands, aching, fatigue, fever.

For many years prior to this, she dealt with an onslaught of sickness, each time presenting itself in the same way – upper-respiratory, fevers (boy were those fevers brutal), tiredness, and unbearable aching. The doctors would tell her it was a virus, or “You’re just going through a phase. That happens to people sometimes.” Oh, really? A phase where you’re sick every month, endlessly for years?

Anyway, I digress. If you haven’t guessed it already, this girl is me.

"All I wanted to do was have a doctor believe and validate me."

Although similar, this sickness felt a little different, but I gave it some time and then called on the doctor. Of course, “virus”, what else could I have expected to hear? The only thing is, it didn’t go away.

Eventually the sore throat got better, but everything else didn’t. It actually evolved, with my whole neck feeling swollen and hard to swallow, along with some other seemingly disconnected, random symptoms. Months went by to no avail as I saw many primary care physicians and specialists. Over the course of my illness journey, I think of this as my first bad crash.

The litany of what those doctors claimed to be wrong and what they claimed NOT to be wrong was endless. I was told I had an infected salivary gland. That I had nodules on my thyroid. That it could possibly be cancer. That it was a Hashimoto’s Thyroiditis flare. That I had PCOS.

That there was nothing wrong with me.

I traveled to local and big city doctors. I had ultrasounds done on various parts of my body; a needless cat scan; an unpleasant regimen with the steroid prednisone; several different prescription medications; and among other things, a big dose of “fuck you” from our medical system.

I had an esteemed specialist look at me, smirk like it was all in my head, and offer me a big fat nothing. Less than 10 minutes of her time, zilch of what could help my ailments, zero redirection or referral, and told me the only thing I could do was wait – that time would make it all go away. Just wait.

And that is exactly what I did – waited. Waited. All that time when I had a serious infectious disease in my body and I was waiting for time to make me better. At the time I didn’t really second guess those doctors. I mean, after all, they have years of schooling, degrees, and certifications. I believed them and trusted the system. But, I had a lot to learn.

The above is just a blip into my Lyme journey that had actually started years before, and just a speck of my long list of symptoms, doctor’s visits, procedures, treatments, and medical experiences. While I don’t know exactly how long I’ve had Lyme (over 13 years), I think that this is an important piece of my story to tell. Because I feel it was a turning point in my illness. A time when my body was trying to tell me something, and I had a chance to go up or down. To get better or get worse.

Over 4 years went by after this, where I struggled in every aspect – physically, mentally, emotionally, etc. I became top notch at hiding what was wrong and a fabulous actress. I did my best at being strong, or what I thought was strong. Deep down I knew there was something wrong, but I tended to believe the smirk on that doctor’s face. That it was just me – “Am I crazy?”

All that came to a grinding halt at age 24.

Sadly, Meg's story is one of so many others who had to fight for their Lyme disease diagnosis. It is a grossly misunderstood disease across the medical community and an all too real fight that thousands are faced with across the globe. The truth that hurts? This disease can be prevented, yet few are even aware of this. Read Meg's story and share with your loved ones to help raise awareness!

In 2013 I crashed very badly, and my life as I knew it was forever changed. Over the next year+, this mysterious illness took hold – doctors, specialists, ER visits, cardiologists, etc.…the list goes on. Paralyzed by fear and panic that was not from me, that I was unaccustomed to, and not able to control. Unable to move from the bed or couch all day, not fit to be alone, afraid of going to sleep because I thought I might die, needing someone to sit with me until sleep finally did fitfully take hold.

All I wanted to do was have a doctor believe and validate me. I wanted to cry out – “This isn’t me! This is not who I am!” What happened in 2013 was like sticking dynamite in a cave and having it explode, implode, and crumble down.

It wasn’t until 2014 that I was diagnosed with Lyme disease, other tick-borne infections, and associated issues. I like to say that I got sick very gradually and in an instant. Because, in reality, that is what happened. For years and years I very slowly declined (telling myself I needed to be stronger), and then all of a sudden everything changed, like a snap of your fingers, and the sickness consumed me.

You know the cliche, “Without your health, you have nothing?” Well, it’s not just a catchy phrase. It’s true – too true. When you don’t have your health, everything else fades away and nothing else matters. Petty things fall to the wayside and what you once thought was so important, no longer is.

What would you do if you couldn’t hold a job, go to social events, or maybe travel and adventure? Or if you were mostly home-bound, incapable of driving a car safely, too weak to wash your own hair? How about if you were unable to do what you love? If the mere life element of breathing was onerously hard? What would your life become, who would you be? This is the reality for many people with chronic Lyme.

I am not writing this for pity or for sympathy, in any way, shape, or form. After all, understanding is what we yearn for. But instead, I am writing this because there was a time when I could have been more easily treated and my life path would have taken a trajectory less towards pain and suffering. A time when I completely trusted our medical system, and believed they knew best.

Because I was misinformed about Lyme, I never gave it a thought.

Now, I know that my first symptoms and swollen glands that I experienced all those years ago are hallmark signs of tick-borne disease. The amount of times I’ve kicked myself, blamed myself, regretted, been so angry with the doctors I saw – most of which really didn’t care about my well being, and instead followed ridiculous guidelines and were led by money.

I am writing this because people all over the world are suffering from chronic illness, and most doctors just use band-aids to cover up their symptoms. Doctors are human, and they don’t know everything no matter how great they’re “supposed” to be. You know yourself better than anyone, so don’t let a doctor or anyone else make you feel like you are lacking a brain…trust yourself.

I am expressing this for you – the people that don’t have Lyme, your children, your loved ones. I want, no, you need to know the truth about Lyme disease – that it is hard to diagnose and hard to treat. Some people that catch it early take antibiotics, get well fairly quickly, and stay well. Those are the cases most hear about, and that is what most people believe about Lyme.

"In 2013 I crashed very badly, and my life as I knew it was forever changed."

The truth is that more cases of Lyme are actually not like this at all.

Most cases? They are people like me, who have gone undiagnosed and misdiagnosed for years. People that can’t just take a simple round of doxycycline and call it a day. They are people with a chronic illness, that struggle everyday just to get by. There are people all around with Lyme, but sadly enough have no idea. Lyme is not easy to diagnose. Read that line, then re-read it…then do it again. It can be mistaken for all sorts of autoimmune diseases, fibromyalgia, chronic fatigue syndrome, MS, arthritis, Parkinson’s, ALS, panic/anxiety, etc.

I am writing this because, unlike I was, you don’t need to be ill-informed about Lyme – an alarming epidemic that is not rare or uncommon. Read, then re-read that line.

I’m also telling this story for those searching for answers to their own health problems, and for those just diagnosed with chronic Lyme. I hope this gives you some sort of solace knowing that you’re not alone in what you’ve been through. It’s a fight, but it’s a fight worth battling.

And finally, I am sharing a part of my Lyme journey because of the fellow Lyme warriors that continue to inspire me every day. To open up, to be brave. We’re all in this hellish war together, and even though it’s hard not to feel alone, know that you’re not. You’re not alone.

And to that girl that grew up believing strong meant not showing your weaknesses – you were wrong – what you think are your weaknesses are what give you your strength.

To connect with Meg, you can find her on Facebook and Instagram.

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There's a whole separate reality that those with chronic illness experience. A reality that goes far beyond the smiles in a picture or being able to attend a rare gathering. Our reality can look like survival, every moment. Even in the ones where we're smiling.

The Truth Behind My Smile in Chronic Illness

I sat silent, staring intently at my phone. A tangled web of thoughts was being formed in my mind: Do I post the picture? But what will this picture say about my life? No picture tells the whole truth. And how many people are going to point out how good it is that I’m “out and about”, as if that’s all that really matters?

Nearly every time I consider sharing a picture of myself on a rare outing, I go through a long list of doubts and fears. Wondering if I can handle the potential cheers from others seeing me someplace other than my couch.

Because sometimes, I’ll be honest, I just can’t hear it. It can be painful to listen to the two second excited pop-ins, especially from the ones who show up for only these particular moments. Here to celebrate my 3 minutes of “normalcy” that were a rare part of yet another very sick day for me.

I’ve then sat and over-thought and critiqued myself for feeling so afraid to just share my moment. For feeling upset with those who truly mean well, but end up hurting me.

I’ve given myself the pep talks, reminding myself to continue bringing others into my world. To show the real me, in real moments. The me that looks mostly normal, but is actually very sick.

“So what’s the big deal anyway,” you ask?

I think in it’s most simplest terms this comes down to perception and reality. Most people see a picture of me smiling on a sandy beach with my husband and they read: “I’m feeling great today! So here I am, out adventuring like a normal person!”

What they don’t see is how long it took me to “wake up” that morning. How many hours passed before the hit-by-a-truck feeling let up enough to get dressed for the day. No one besides my husband was there to help me slowly make my way to the car so we could drive from our hotel to the beach.

I wanted to visit the sandy shore on our birthday getaway last month. Nothing felt more important to accomplish. So that’s what I set my sights and energy on. Because I had hope that there was just the right amount of everything-in-the-stars aligning for me to make it happen.

Just enough strength, the right level of pain, an inner excitement for a tiny bit of fuel. A sturdy cane and a husband to keep me from stumbling.

It took me what felt like an eternity to make my way from the parking lot, over the sand hill and down close enough to the water to let my toes take a dip. Each step painful and difficult. My breathing, labored. The sun shooting through my sunglasses, spiking my head pain higher.

And yes, it’s true: I made it. Without falling over or passing out.

But not without sacrifice.

Can we talk about the reality of chronic illness for a minute? It's hard. It just is. And yes, we will endeavor to live our life to the best of our abilities, even if that looks like a "big day" being just getting outside of the house. We might even smile and post a pic about it. But our reality never changes. We will pay for exertion. We will fight to survive every day with strength and dignity. But it's never easy, and it's never "normal" for us. Behind that smile is a war that's raging, unseen by the naked eye.

The truth? I found myself regretting all the effort of that birthday weekend days after we returned. In multiple moments you’d have found me sobbing that following week from all of the pain and symptom aftermath. It took me a week and a half to finally feel like my “baseline” was in sight, my sick normal.

And yet that picture we took sits brightly in my social media feed. To some as a beacon of hope that their friend or relative had a moment of enjoyment.

But to me it’s a picture that displays the very center of this excruciating journey. That sometimes the cost for something beautiful is far more than what we’re willing (or what should be fair) to pay.

What can also be lost in translation is that those moments for me aren’t as joyful as others view them. Like any normal person, when you’re going through something hard everything can feel tainted by that circumstance. Almost like a heavy film that is layered over our horizon.

I’m learning that it’s natural and okay for me to sit in the tension of what this reality is for me. That I can both regret and cherish that point in time. That choice I made to find enjoyment in those minutes at the beach.

Because the truth is this: no one should have to endure what I and other sick ones face for accomplishing simple tasks. Like slowly walking yourself to the edge of the shore. Or loading a dishwasher. Or getting out of the bathtub on your own.

Knowing what everyday tasks will do to us has a tendency to spin our view of the enjoyable moments when they come. Because they don’t tend to last in our world. We visit them, enjoy them, cling to the memory of them – but then the storm comes in all its fury.

And we know it. We know it’s coming. Because for many of us it always, always does.

In the end I chose to post that picture, and many others, because I’m reaching for something different. I’m reaching to cherish them for what they really are. They are part of documenting the reality of this chronic illness life. The good, the bad, the real.

It’s part of the remembering. For some day if I’m well enough to walk to the shore again without pain and without a week and a half of my body crashing like a deflated balloon? I’m going to look back at that moment.

And I will remember the beauty and the pain.
The inner strength and the frailty.
The kindness of a stranger telling me to take my sweet time up the hill. 

I’ll remember that brokenness and beauty can mysteriously survive hand-in-hand. 

Be sure to find me on Facebook and Twitter if you haven’t already! I’d love to connect. 🙂

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