group of young women posing wearing leggings

A Love Letter to Leggings, From a Woman With Lyme Disease

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Dear Leggings,

I don’t take enough time to thank you for sticking by me during my struggle with Lyme disease, so here is an organized list of how you have blessed me these past three years.

1. You’re not as painful as jeans.

It didn’t take me long to realize those skinny jeans hug my body too tightly to wear them except for certain occasions. Otherwise, it was better to go with the button-less, snap-less, zipper-less, comfort-filled alternative — leggings. Most of my days are spent lying in a fetal position so there is no reason to look presentable. Leggings keep me somewhat comfortable during my Netflix binges and medicine sorting.

2. I can curl up anywhere in leggings.

Jeans, skirts, and dresses just don’t allow for the same flexibility that leggings do. When you wear leggings you are halfway in between being awake and part of the world, and asleep and dead to the world. I may show up to an event or party, but if I’m wearing leggings you better bet I will be passed out in a corner just because I can.

3. Bloating? No problem!

My digestive tract is a mess thanks to a pesky tick so, if I eat, I will go from practically flat-stomach to nine months pregnant. If I’m wearing jeans I have to unbutton my pants while imagining life if I would just buy maternity clothes. However, simply by wearing leggings I can bloat as much as my GI system chooses, but my clothes will stretch with me.

4. People think you are cute and put together…

…even though you definitely aren’t! If I wear a cozier nice shirt to church or throw a flannel on with my leggings for school, people think I’m going for that lazy-chic look even though my body is trying to kill me and those are the only clothes I am able to wear.

5. Leggings comfortably hide the fact that I haven’t shaved my legs in a month.

It’s no joke. Showering with a chronic illness is tough. If I do manage to do it, I’m probably only going to do the basics such as washing my hair. This means that my legs are usually neglected, but if I wear leggings no one will know but me.

Surviving Lyme would be so much harder if I didn’t have seven pairs of leggings. So in conclusion, my dear pairs of leggings, never think I don’t love you, because sometimes you are what get me through my hardest days.

Love,

Lymie in Leggings

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5 Needs I Have Due to Lyme Disease That I Tell My Yoga Teacher About

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I am still working on healing and have some special needs since Lyme disease. It’s funny how you make accommodations in your own life for when you are sick and in recovery, and over time you normalize things and forget that’s not the way everyone else does it. Then you get in a class or conference and you get a sharp reminder.

OK, I need to get over myself. It is prudent to share my needs and limits with my teachers. But just what they need to know – not my entire medical history. When I go to a meditation class I don’t need to share as much as when I go to a yoga training. After I share I try to forget about it and dig into learning.

 

Honoring My Needs Since Lyme Optimizes My Learning Opportunities

Before Lyme disease, I was a yoga teacher full-time who had a strong practice and sat on the floor every day. After Lyme is a different story. It is clear to me I am not yet fully recovered or mobile when I get with a bunch of yoga teachers or students. It a distinct reality check, but I need to remember to celebrate that I am able to engage with learning in person. I can drive to class and participate and enjoy.

I realize it is just honest for me to share the reason for some of my behaviors and how they help me learn. I try to stay away from oversharing; TMI can be a pain. But I want be sure my needs will not be disruptive to the teacher or the group as a whole.

When I started venturing out I brought my own chair so I knew I would be comfortable. I would only go to day training so I could manage my care.

Now I have done a couple of week-long trainings. I bring all the normal stuff plus extra pillows, medicines, a seat cushion and a back belt. That is all I need. Most times I can work with facility chairs and stay in any normal room. My yoga mat is set up by the wall for extra support. I always check in with the teacher before I sign up for the training and on the first day.

Five Needs I Have Since Lyme Disease That I Tell My Yoga Teacher

1. No high-risk tick habitats for me. No wading through meadows, sitting on grass, hugging trees or outdoor yoga.

2. I don’t sit on the floor. It is pretty standard in a yoga training to sit on a mat on the floor, so I still bring a tube chair to those. I explain that my low back stability does not tolerate sitting on the floor or ground. I get up and move around to keep comfortable. Once an hour I walk around so I don’t stiffen up.

3. I am less heat and cold tolerant than the average person. So I bring chill pal scarves and personal fans in the summer and extra layers and indoor use only slippers in the winter.

4. Plenty of sleep is a non-negotiable. I have a cut-off time of 9:30 p.m. most nights to be sure I wind down and get the sleep I need. Sometimes these trainings run from 7:00 a.m. to 11:00 p.m. I cut out to hit the sack by 10:00 p.m.

5. My yoga practice is gentle. Generally I have to modify public classes that are part of teacher training. I protect myself and say I don’t want any assistance to deepen my expression of the pose.

For the most part, once I talk with my teacher, there is no problem. People in my community are wonderful and generous. The most important thing for me is to understand what I need to do to protect myself and keep healing. Bring what I need – cushion or slippers – so I can continue to learn, grow and expand my world.

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Thinkstock photo via Ridofranz.

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What I Really Meant When I Said I Was in 'Remission'

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Remission. It’s a tricky term when it comes to chronic illness. The night that I learned I was getting my peripherally inserted central catheter (PICC) line removed, I rushed to post the news on Facebook. Unsure of how to communicate it in a way that was most clear to others, I settled on “remission.” I wrote:

“Still have a ways to go, and the chronic illness battle will never be fully over, but… bye bye PICC and hello remission!!”

I was wrong. And I regret it.

I’d always been self-conscious of posting the raw truths of my illness. I’d opened up vulnerably a few times on Facebook throughout my fundraising campaign, and I felt that I simply couldn’t be “negative” anymore. So many people that followed along on my journey prayed for me, hoped for the best, remained optimistic that great progress would be made. There was no comment more common than, “Stay strong!” or, “You’ve got this!” And while all of this was (and continues to be) extremely heart-warming, in knowing that people cared about me and my health, it was also debilitating.

I had so many people hoping and praying for my improvement; how could I let them down? How could I admit to them the ugly truth that I could not even admit to myself? That my PICC line was coming out not because I was better, but because I was done getting better? That my crappy level of health was what I’d now have to settle on? That there wouldn’t be any more getting better?

I couldn’t. And so remission it was. The post, as always, was quick to yield lots of love, racking up hundreds of likes and dozens of comments, plenty of phone calls and text messages. Again, the love was marvelous. I received loads of new material to add to my “heartwarming messages” album, and I’ve looked back at it regularly over the course of the last two weeks. And so that night, I knew that I’d done the right thing. People were happy. Their prayers and hopes had worked. I had “stayed strong” and here I was, in remission!

And then the next morning came, and I felt like complete and utter shit. There was just one person to whom I could vent and cry freely – my good friend Becky, who struggles with a chronic illness as well and understood the reality of its permanence. But for everyone else, it was a day to celebrate, and celebrate I had to. After all, remission is such a positive word; how could I possibly be upset about my illness when I’m in remission?

Because for me, remission doesn’t exist. I am ill, and I always will be. What remission means is that the intensive treatment that I have been undergoing for the last year is now stopping because this is the best I’ll ever be feeling (ironic, being that I feel like shit anyway). Once there is no improvement for a minimum of three months in intensive treatment, it is assumed that no further improvement will be seen. And with that, you’re introduced to your “new normal.”

If anything, my “remission” day was more emotional than any other day throughout the journey. It was the day that I lost the ability to hope, because there was nothing left to hope for.

For the three years after I first got sick, I hoped for a diagnosis. Once I was diagnosed, I hoped for improvement, for a return to my former, healthier self. But once my PICC line was removed, once it was decided that it was time to switch from intensive treatment to maintenance treatment, there was nothing left to hope for.

Instead of hoping for improvement, I now had to adjust to an ugly reality that I didn’t want to face. Sick was my new normal. I would have to adjust my lifestyle to my physical limitations, and structure my life around illness. You can see why this would be a difficult concept to reconcile.

Don’t get me wrong. I’m better, I am. I no longer have headaches every single day. I’m able to sleep through the night. I go out and socialize, even if I’m feeling too exhausted to do so. I’ve lasted through full days of school – rare, but I have. I can sit and work for 30 minutes now instead of 15.

But for every area in which I’m better, I’m also at a place that is so drastically worse than that of a healthy person’s. I still suffer from headaches regularly. My sleeping through the night is due to medications, and still isn’t regular. My socializing is limited in ways others can’t even imagine. I can’t go anywhere – to a class, to meet with a friend, to a party, to an event, anywhere – without thinking, “What if I get sick while I’m there?” I can’t leave the house without three large packs of emergency and daily medications, packed in my bag.

I have a scar on my arm, reminding me, everyday, of the nine month hell that I went through. I go through days of being too nauseous to eat, and then days of being so hungry that I can’t stop eating. I never know when I’ll feel too weak or dizzy to stand, let alone to be in public. I swallow a total of over 25 pills a day, and will always have to. I get weekly blood tests to see if the life-saving poison (medicine) that I have to take has ruined my liver yet. And more than anything, I am exhausted. Always. There is never a time when I’m not tired, and I must go through each and every day as though I’m climbing a never-ending mountain. And it’s one freaking steep mountain.

This is dark, I know. I’m sorry if it’s too dark for you, and you can stop now. I won’t be offended. In fact, I should’ve warned you in the beginning that this wouldn’t be a happy post. But this is my reality. And for once, I think I deserve to allow myself to express it.

Now, don’t get me wrong. I’m not eternally miserable. It could be worse, and I realize that. I’m grateful for the amount of health that I do have. For the fact that I’m able to live a relatively normal life, that I’m able to exercise, to go to school, to spend a year in Israel, to live autonomously. But I’m also frustrated as hell, and I realize it’s time that I share the sadness, loneliness, and frustration that comes with chronic illness.

So that’s my remission. It’s an ugly one. There’s no PICC line, but I’m not healthy. You’ll see me posting happy photos on Facebook and Instagram, hiking and learning in Israel, studying and partying in college, but I’m not healthy. There will be good days, but I’m not healthy. Beneath the happy surface, beneath the celebratory Facebook posts and optimism that I attempt to project, there’s a hell of a lot of suffering and sadness. And that’s the reality.

Time to learn to live with it. Here’s to finding my “new normal.”

Follow this journey on Squeezing Out Lyme.

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My Lyme Disease Does Not Define Me

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Lyme does not define me.

It took me a long time to accept this. When I was first diagnosed, my life revolved around Lyme disease. I couldn’t stop reading about it and worrying about it. Every question, answer and action of mine involved Lyme. When I thought about myself, the first thing that came to mind was “Lyme.”

 

With Lyme disease, or any chronic illness, it’s easy to identify and associate with our illness. After all, it takes over our life and affects every aspect of it. It makes us forget who we were before we got sick, and who we are becoming. It’s easy to get lost in the pain, symptoms, shame, guilt, frustration and embarrassment.

But it’s important to ditch the labels and focus on who we are at the core. It’s OK if we identify with our illness, but we also need to expand our identity. We are so much more than our disease, our symptoms and our lab tests.

Maybe we need to identify with our positive qualities and passions instead of our illness.

What are your positive qualities? Maybe you are generous, friendly, playful, witty and intelligent. Identifying with these traits instead of our disease helps take us out of the self-imposed boxes in which we put ourselves and makes us unique. Sometimes this can change every day. And there’s nothing wrong with that. We are constantly changing.

What are your passions? If you weren’t sick, what would you be doing right now? Maybe you would be focused on raising your kids. Or creating art. Making jewelry. Playing sports. Singing. Dancing. Knitting. Starting a business. We all have talents and passions that go beyond our illness. Just because we can’t pursue our passions in the present moment does not make them any less important.

Keeping our hobbies active (if possible) can help remind us of our strengths and interests. Maybe there are days that you can’t get out of bed and can only think about your symptoms. And that’s OK. Maybe other days you can do something that brings you joy, even if it’s watching your favorite TV show from bed. Or reading a good book. Or writing. Writing down our thoughts, feelings, and goals can help us realize that we are more than our illness. Sometimes our best ideas come to us on the worst of days.

Maybe we can define ourselves by love, kindness and relationships. We can love ourselves fully, even the parts that are ravaged by Lyme. We can shower our illness with love instead of fear. We can be kind to ourselves by practicing self-care, making ourselves a priority and staying optimistic, even on the worst days. We can see our relationship to Lyme as temporary – a visitor passing by that is actually a blessing in disguise.

In this way, Lyme shapes our identity but does not define us. Let’s take back the power Lyme has over us. We may have Lyme, but it doesn’t have to have us.

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Thinkstock photo via moodboard.

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Meeting the 'New You' After Illness Strips Away Your Old Identity

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From a young age, society teaches us that we need to come up with a definition of who we are. We begin cultivating this identity from the minute we are born. Taking in suggestions from family, friends, and caretakers along the way.

As a child, maybe you’re a soccer star or a star wars fan. As a teen, diving deeper in, you become president of the yearbook club or a member of the marching band. By the time you hit adulthood you may think you’ve got it all figured out. You might have a career and often a degree that defines you. Maybe you’re a journalist, an accountant, or a baseball player. The never-ending search to answer one of the biggest questions of our life continues on and on. Who are you?

But what happens when this identity you’ve built up for so long is stripped away from you?

Suddenly you might become so weak you can no longer be the party girl out dancing until 4 a.m with your friends. You may have severe brain fog and cognitive disabilities – forcing you to lose the capacity to perform your job. You might resign from work and realize you’re no longer the successful lawyer at the big corporate firm. Your joint pain could become so severe you can no longer stand at the kitchen counter preparing a meal for your beloved family. This is the reality of chronic illness.

Now that you’ve seemingly lost it all, who are you?

Once we are stripped of our jobs, social lives, and hobbies, we often realize the identity we thought we were building up for years prior doesn’t really encapsulate anything about who we really are. These definitions we come up with are just personas we identify with. They’re often based on the mold that we have fit ourselves into at the hands of an omnipresent society. We define ourselves by the careers we chose, the friends we have, and the skills we cultivate. Once you let go of this image, you’re left with the bare bones of what truly defines you. It’s not our job, our bank account, or our degree that make up a person – we each are so much more.

Maybe other people in your life could see the true you before. Someone super close to you can sometimes see this raw version of you aside from the superficial identity we’ve created. This person catches glimpses of you shining through, but it’s always eclipsed by the identity you’ve worked so hard to create. This facade we build up is so believable that even you can’t seem to identify your genuine character through this fog. But now, with no choice but to leave everything you once had behind, you might find out you are not quite who you thought you were.

In fact, lately, when I look in the mirror, it’s like I’m meeting myself for the first time.

Here’s what I’ve learned. I’m a lover — I would do anything for the people closest to me. I’m creative and I often see things in a different light than others may. I’m accepting of everything and everyone. I’m a free spirit and I don’t like being told what to do. I’m compassionate, capable, and captivating. Dare I say it – I’m funny. I make it my job to keep everyone around me laughing and happy. I’ve come to recognize there is a limitless expanse of who you are and what your spirit can truly become. I love these things I’ve learned about myself. I think that the most important lesson we all can learn from chronic disease is how to fall madly and deeply in love with the true you.

Now when I look back at the old me, or who I thought I was, I think, “Why would I ever want to go back?”

There’s nothing wrong with the old you, but the old you didn’t endure this battle. They didn’t fight when they thought they had nothing left to give. They aren’t wearing the battle scars you’ve earned through this fight or wield the wisdom this journey has taught you.

Losing it all teaches us we are meant to break these molds, to change, and to evolve as people. You might even say only the very lucky ones get to go through this metamorphosis and to meet themselves truly and honestly for the first time. Just as the caterpillar sheds its cocoon at just the right moment becoming the beautiful butterfly, you too can develop into a progressed version of yourself and leave the dried up shell of the former you behind.

This new version is better than you could have ever imagined. Truer than you could have ever hoped for. Happier and freer than the one before.

And although I hope this is the only metamorphosis I have to endure in my lifetime, I’m a more authentic version of me for having survived it.

So my advice would be to let this disease change you, let it strip you of what you thought you knew about yourself and forget what you know. I promise that when the dust has cleared and you build yourself back up, you’re going to be so much more than you ever thought you could be.

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Thinkstock photo by Grandfailure

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5 Photos I Didn't Share on Social Media of My Lyme Disease Treatment

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Art is my world. It is equally tied with music. I love the two and cannot imagine life without them. Actually, I can, because for two years during treatment, music and even the light of the television was torture to me. I had extreme sound and light sensitivities and this made indulging in what I love most, torture. Now that I am on the mend with my health journey and seeing more and more pieces of normalcy flowing to me, I have rekindled that flame for my love of the arts.

Photography has been something I have been interested in for years. In college I studied art and took two photo courses. I love to document the things I see around me and share the way I view the world through the lens of the camera. I find this difficult at times now that I am in treatment since some of the images I long to share, I know hold a repercussion. I used to think that was in my head, but I see now the more I share the pictures of me on my good days, the more people flow back into my life. The times I allow myself to be more vulnerable and share the raw reality, the less people flow to me.

I know this should not bother me and I should own who I am, but I have lost so much in the last few years, I do not want to lose any more. The people close to me should love all of me and honor what I am going through, but the reaction I get is more of a “we do not need to see that.” It reminds me of a time in my past when I worked for a nonprofit organization that spread the word about animal cruelty. I would work on weekend events as a volunteer and people who stopped by the booth would often tell me that what we were doing was wrong. Many felt it was gruesome and something they did not need to see. Often people like to keep their own environments neutral. Seeing someone go through an illness or an event that is not the PG version of life reminds them of the harsh reality of the world. The real way things work. It is easier to shut our eyes and shut out the things we do not want to see. Shutting our eyes is easier. Opening them wide and seeing the reality is hard.

These are the photos I have taken that I do not share on my social media. They are the ones I take when I see a moment in treatment I want to capture. The ones that sit in my camera that I wonder if I should delete because I can never share them. The reason I take photos and share artwork is not in vain. I feel I have been given a gift of seeing the world in a beautiful way and I want to simply share that with others. I want others to see the same thing they may see every day in their eyes, in my eyes. I feel this can help others to understand me more than a million words could. I hope these images can help you understand. I hope they can help you to relate and maybe share your own experience too.

Weekly Infusions with and hour and a half drive each way
Weekly infusions with and hour and a half drive each way
woman on the couch with a dog in her lap
Couch days
woman on the bed with her dog
Anxiety attacks
weekly pill organizing
Weekly pill organizing
waiting room
Another waiting room

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