Lyme month day 8–Sunshine

I have been having some issues lately accepting my picc line. I have had it for a few days short of 7 months, it’s not new by any means at this point, but I’m struggling with it. A few months into having it, it started to feel normal. Getting the dressing changed felt like a thing I just had to do. Looking at it in the mirror even felt semi-okay. But about two months ago, around the time that treatment itself got really hard, I started to resent my picc line. 

And then something came back to me. Something that one of my college professors—someone very important to my journey and also to my life—said to me back when I was struggling with my first port a few years ago. 

She told me that my port was the spot where the sunshine could get in. 

And that made all the difference. All of a sudden my port didn’t seem like a foreign object under my skin (even though it was), it seemed like something that was making things a little brighter. It seemed like something that was helping to take the darkness away. It seemed like something that was going to be okay. 

When I thought about that again recently, with my picc line in mind instead this time, it was a little different, but helped nonetheless. And also made me so grateful all over again. So grateful  that I had a human in my life during some of those hardest days of my life that took the time to help me find the sunshine. 

My port was the first spot that let the sunshine in. Now my picc line, as scary and ugly and weird as it is—I have to believe it’s letting the sunshine in, too. 

Lyme month, day 5–The Little Things

When I was sitting here thinking about what to write for today’s post, I was kind of stuck. I have some bigger topics that I want to write about, but I want to give them more time than I have right now. So I wasn’t really sure what today’s post should be. Then I realized I was scratching my arm. And that gave it to me! 

When I think about my life with Lyme, I think about some big things that have been struggles, of course. I’ve talked about those big, life altering things many times before. But what I haven’t really talked about are the little things. The little things that you probably wouldn’t even think about. The little things that I know I wouldn’t think about someone having to deal with it I wasn’t dealing with them, myself. 

Let’s start with the one that sparked this post topic—my itchy arm. My picc line is covered, 24/7 with an adhesive dressing. I don’t have a specific allergy to the dressing, but think about having a bandaid on your skin, non-stop, for 6 moths straight. It only comes off for 5 minutes once a week for another one to be put back on. The skin underneath of it is blistered, burnt, and itchier than anything I have ever felt before in my entire life. And I can’t truly scratch it because it’s covered in the adhesive plastic. It’s quite literally an itch I can’t scratch. 

The next thing is my hair. I have not washed my own hair in 6 months. If you know me in real life you know that my hair is kind of my pride and joy. It’s the one thing I constantly get compliments on. It’s the one thing that I have going for me. But for the last 6 months it’s been such a struggle. Sometimes I go a week and a half without washing it because I don’t want to have to ask anyone to do it for me. And then when someone else does it for me, it’s not an easy task. It involves me hanging over either the sink or the bathtub while I cover my arm with a towel so it doesn’t get wet. It’s not comfortable, it’s not easy, and it’s frustrating. 

Then there’s the clothes struggle. And this one doesn’t just have to do with my picc line. There is a symptom of Lyme that makes the sensation of fabric too much to handle. I don’t experience it all of the time, but there are definitely times that I do. Waistbands especially. Bra straps. Necklines. Anything restricting. It feels like I’m being strangled, stabbed, and eaten alive by fire ants all at the same time. You’d never know it from the outside because well, I have to wear clothes, so I work around it. But it’s a terrible feeling. And one that I would never know that someone else was experiencing just by looking at them. 

Just a few things to think about. Little things that, like I said, I wouldn’t know that someone with Lyme was dealing with if I had never dealt with them. Something that I don’t think you probably know about me by looking at me. But something that matters, because it’s part of the bigger picture of why awareness and help for this awful disease matters. 

If you are dealing with these sort of things that seem like the little things compared to the ones that feel much bigger, please know that they matter just as much. Every part of your battle—whatever that battle may be—matters just as much. And I see you. 

Thank you for seeing me, too.

Lyme month day 3–Floating.

There’s this weird place in life with a chronic illness where you’re not quite disabled by it, but also not quite totally functional. 

That’s where I am. 

I’m constantly floating in between the days where I am, in fact, stuck in bed and the days where I can go about my normal life all day without a problem. I’m constantly back and forth between looking sick and hiding it really well. I’m constantly stuck between listening to my body and, therefore, doing less than I want to be, and pushing my body and feeling the consequences. I’m constantly in that in-between.

And it’s exhausting. 

It’s exhausting to wake up in the morning and not know where on that spectrum of functionality you’re going to be that day. It’s exhausting to start a day in one place and then have something happen mid day that details you and sends you to the total opposite end of the spectrum. It’s exhausting to have to explain why you can’t do something today when you did something all day yesterday. It’s exhausting to feel like you are constantly floating back and forth. It’s exhausting to have to carry your emotions with you as you float back and forth. And even more so, it’s exhausting to feel like you’re floating back and forth in such an unpredictable body—a body that doesn’t even feel like yours. 

It’s a weird place to be in. Don’t get me wrong, I’m grateful that I’m not bed bound all of the time. I’m grateful that I do have the days on the other end of things. If you know me at all, you know that I am always grateful. But man. The inconsistency is killer. 

So, if someone you know has a chronic illness, take a second to consider this. Take a second to consider that maybe they are floating back and forth, too. Maybe they don’t know which way is up, either. Maybe they don’t know who they are when they look in the mirror, either. Maybe their emotions are feeling so heavy from their back and forth journey. 

Maybe they are just as exhausted as me. 

I’m baaaack!

Hello! I finally was able to get back into my account so here we go—Lyme awareness month, day 1...kinda!

As I write this, I am lying on the bed after I just had my picc line dressing changed. I realized that last year I didn’t have this picc line and wasn’t in the middle of treatment, so I guess we can start there—with a recap of my year from last May til now! 

Since last year I have: 
1. Gotten a picc line in October. 
2. Started IV treatment through that picc line. 
3. Had to get a new picc line in January because the first one re-routed itself from my heart (where it is supposed to be sitting) up into my jugular (where it is not supposed to be sitting)
4. Gone through 6 rounds of treatment. 
5. FINALLY gotten good news about my spleen and liver for the first time in TEN YEARS. 
6. Gotten a whole lot more tired and a whole lot tougher.

So, that brings us to today. I am, like I said, 6 months into treatment. I have hopeful moments. Moments where I think maybe I’m finally going to see the light at the end of this tunnel. And I have moments where that light is nowhere to be found. Lyme is hard. Lyme treatment is harder. But I’m nothing if not determined. And excited to be back here sharing with you again!

Thanks for being here. 

Lyme month day 31–That’s a wrap.

Well, here we are again. The last day of another Lyme awareness month. 

I can’t say I killed this one. There were quite a few days that I struggled to post, and a few of those days that I ended up not even posting. But that’s okay. I gave you a very real month and that’s what I promised. Part of spreading awareness is showing that this journey is hard. If I always made it look easy, hopeful, and sunshiney, then I wouldn’t be doing my job very well. I need to show you the hard parts too. The dark parts. And the scary parts. To make you realize that this is not something you want for yourself or the people you love. To make you realize that it really does matter—that the push for more understanding, education, and awareness really is so very important. 

So thank you. Thank you, as always, for being along for the ride this month. Thank you for helping to spread awareness, even if that’s just by becoming more informed yourself. Even if you read my posts and think I’m crazy, you know more than you did before you read them, so I count that as a win. ;) 

And, as you go forward this year remember these important things: 

1. Buy a tick key. DO NOT use essential oils, alcohol or Vaseline to remove a tick. If you do not have a tick key, use tweezers and pinch it as close to the skin as you can and pull up. You can send the tick in to the UMass zoology department to have it tested for Lyme and other tickborne diseases. The website with information on how to send it is: www.tickreport.com 
2. If you have a tick bite and do not develop a bullseye rash, it does not mean you do not have Lyme. Symptoms are going to be your guide, not the rash. If you are concerned, get it checked out. As I’ve said before, it is better safe than sick for the rest of your life. 
3. Do not panic about Lyme, but also do not assume you do not need to worry. Do not assume that you are invincible. It happened to me, it could happen to you. Do not let it stop you from living your life, do not stop going outside, but take the proper precautions when you do to try and protect yourself and the people you care about. Every bit helps. 
4. If someone you love has Lyme, be there for them. Ask them how they need you. And let them still be there for you, as well. Tell them things. Include them in things as they are able. Don’t stop inviting them. Don’t give up on them. Their body is doing that already—don’t do it too. 
5. If you have Lyme questions, ask me! This month is over but I’m not going anywhere. You are not alone if you’re on this Lyme journey in any way. I know it can be intimidating, especially at the beginning. But you never have to face any of it alone. If I can’t answer your question, I will find someone who can. I have people in my life in all different stages of their journeys—someone is sure to have your answer. Or, if you want to look up info yourself, use www.ilads.org. That is the best, most accurate, trusted information on Lyme and other tickborne illness. That’s where you’ll find your best answers. 

And thanks again—I appreciate you. I truly do. 

Lyme month day 29–“You Should See a Psychiatrist”

I saw a new doctor today. Actually, let’s not beat around the bush—I saw a psychiatrist today. And let me tell you, walking into a psychiatrists office for the first time after being told for years upon years that I “just needed to see a psychiatrist” because I was “not really sick” was not an easy thing to do. The time that my mom was told that she needed to get me to a psychiatrist because the list of symptoms that I brought to the infectious disease doctor was “too clinical and had to have been printed offline” was not far from my mind as I walked into the office this morning. The time that I ran out of my pediatricians office crying when he said “oh is that what you want to be wrong with you next?” when we asked about Lyme for the first time, and I ended up being put on depression meds instead, wasn’t far from my mind either as the door closed behind me today. 

Everything inside of me was telling me to turn around and leave. But I didn’t. Everything inside of me was repeatedly reminding myself that I was there because I was choosing to be, not because anyone was making me. But that voice of “you aren’t really sick. You are feeling this way because you want to feel this way. This is all psychosomatic. You are just young and looking for attention. You need to see a psychiatrist before this goes any further” was there too. Like a far away whisper, kind of. But there, nonetheless. Everything inside of me felt like it was being squeezed and simultaneously exploding. 

But I did it. 

I did what I needed to do. For myself. And I think that maybe when all of the feels have calmed down, I’ll feel a little stronger for it. 

And then, while I was talking to her, the doctor mentioned that psych was a “grey science,” meaning that it is something that is different for everyone and it takes a while to figure it out. And she said “I know that’s something you understand, since Lyme is a grey science, too.” 

And that was all I needed. Validation. 

I honestly never thought I would walk into a psychiatrists office. I absolutely think that mental health is of utmost importance. I don’t think that we can heal physically if we don’t also heal mentally. But I didn’t think that I would ever be able to do what I did today. 

But I did it. I needed to do it. And I did it. 

And I think that a little part of my brain that was angry for a really long time might be on its way to being a little less angry. Slowly, but on it’s way. And that’s all I can ask for. One step at a time. 

And if you’re reading this and any of it resonates with you—if you also have been told that you are not sick, that you are faking, that you are just wanting attention, or if you are struggling to take the step towards mental health help for ANY reason at all, any reason in the whole world—you are NOT alone. It can be intimidating. But it is SO IMPORTANT. Because you are SO IMPORTANT. There is no you that is more important than you. So please—if you need a hand, or an ear, or a set of eyes, to help you, I am here. Reach out to me. You are not alone and you deserve all of the good things. I sincerely mean it. And I love you—just in case you need to hear that today, too. 

Lyme month day 27–Bad Advice

I am frustrated, y’all. I am frustrated at the amount of false, and downright dangerous information that is being spread around social media this month as “Lyme facts” or “tick removal methods.” I’m frustrated, I’m sad, and I wish I could reach through the screen to every person that is commenting on the posts and shake them and tell them the truth. Show them the truth. And tell them that they can maybe help themselves even just the tiniest bit by not listening to that bad advice. 

The first thing that got to me this month was the essential oil tick removal method that is going around Facebook. It is a video of someone dripping peppermint essential oil on an attached tick. The oil causes the tick to back out, removing itself from their skin. They say that it’s an easy, painless, removal method. And when I looked in the comments, I saw so many people saying that it was brilliant and that it was so much safer because it got rid of the risk of leaving the head of the tick in your body. What they aren’t aware of, or maybe aren’t acknowledging if they are, is that dripping the essential oil (or dripping anything) on the tick causes it to empty everything from its body into your body. Think about that for a second. It’s as gross, awful, and scary as it sounds. And it’s for sure not something that you want happening.

But the thing that really fired me up and inspired this post today was a series of pictures entitled “Is this Lyme disease?” Each picture had a skin rash/bump/lesion in it and underneath it said whether or not it was Lyme, according to the person who wrote the article. Immediately my guard went up when the first picture was a tick bite, without a bullseye, and it said “No! This is not Lyme disease. This is just a normal reaction to a tick bite. This does not indicate any infection.” 

*Deep breaths Leigh, deep breaths* 

I have shared the statistics many times before here on my blog about how many people who have Lyme get the “classic” bullseye rash. And the numbers are always changing. But, according to the International Lyme and Associated Diseases Society right now, it can be as low as 15%. Fifteen. Percent. Only 15% of people get that bullseye that is recognized as “the Lyme rash.” So, no one. No. One. can look at a tick bite and say it is not Lyme. Hell, no one can even look at a negative Lyme blood test and say it’s not Lyme. So by no means should that article with those pictures and that VERY false information be going around as truth.

If you have a tick bite and for any reason at all suspect that it could be Lyme—you don’t know when you got it, or even if you do know when you got it but you have ANY symptoms that have come on after the bite—get yourself to the doctor. No matter what the bite looks like. Better safe than sick for the rest of your life. 

And, if you see these things floating around social media, say something. Or, if you don’t feel like you can say something, at least don’t share them. Please. 

I’ve said it before and I’ll say it a thousand times—it takes every single one of us. 

Lyme month day 25–Non-Lyme-Leigh

After chatting with a real life friend today and realizing that there were some non-lyme-life things she didn’t know about me, I realized there were probably a lot of non-lyme-life things that you, my blog friends, don’t know about me either. So, I’m going to let you into my non-lyme-life a little more today. Because there are so many more things about me than my Lyme. So much life that I lived before it. And believe it or not, so much of me still outside of it now. So, without further ado, let me introduce you to non-lyme-Leigh: 

1. I have a birthmark on my ankle that is shaped like the Statue of Liberty. 
2. The number one thing on my bucket list is to rent a small drivable RV and take a trip—either across the country or up and down the east coast. But, I want to go with someone else so that I get both the experience of driving it and riding in the back while it’s moving. 
3. I have only used green toothbrushes for probably 10 years now. I almost switched to a teal one when I needed a new one last week but I just couldn’t do it. 
4. I am a pro parallel-parker. With the curb on either side of the car. Ironically, I failed my driving test the first time for timing out on parallel parking. 
5. My dog is my favorite thing in the whole world. But you probably knew that one if you know me at all. 
6. I do have a college degree. That’s one that my friend didn’t know, so I thought I’d tell you, just in case you didn’t know either.  I’m super proud of it and can’t wait to be healthy enough to use it again someday. 
7. One day when I was little, my cousin scared me in my grandparents basement and I have been afraid of basements ever since. Whenever I walk into a basement, a creepy music box soundtrack plays in my head.
8. My favorite movie of all time is Willy Wonka and the Chocolate Factory. The original one. I know ALL the words. All of them. I could be a one woman show. 
9. My eyebrows are curly. Just going to leave that one right there for you. As weird of a situation as it sounds like it is, it is. 
10. I really, passionately, hate lemons in my water at restaurants. I read an article once about how dirty they are and I have never recovered. 

So, there you go. There are some things about me that you may not have known. Like I said, there is so much about me that isn’t my Lyme. Sure, my Lyme is huge. It’s a lot of me. But is by no means all of me. So thanks for taking a minute to learn a little more about non-Lyme-Leigh, too. 

If this is the first time you’ve met this part of me—hi, it’s so nice to meet you! I’m so glad you’re here.

Lyme month day 24–A Break

Let’s address the elephant in the room. I have been terrible at blogging this month. I am not going to make excuses, but I do have an explanation. And I hope that you will hear me out. 

Lyme. Is. Exhausting. 

But hold on. Before you click out of this post because you think it’s going to just be me talking about how much everything sucks, give me just a second. 

I have been having a hard time. I would be lying if I told you otherwise. I feel like I’ve been living at the doctors’ lately. I’m on the verge of hopefully some really forward motion but I’m also being hit with some super unnerving new symptoms as I wait for that next step to be able to happen. It’s a scary teeter-totter again right now. And it’s exhausting. 

And yes, over the last few weeks, I have had a few days where I did not post a blog. A couple of those days I fell asleep—one of those days I literally fell asleep with my phone in my hand typing out the post. And the rest of the days I simply did not get out of a post. There were various reasons that are not important; I just did not get out a post. Lyme does not take a break, but sometimes I need to. And that is okay. 

But I am not the only one that is going through something hard right now. I am not the only one who has Lyme. I am not the only one who is chronically ill. I am not the only one who has any kind of struggle. I am not the only one who is busy. I am not the only one who is a human. I can 100% guarantee that if you are reading this, you are also going through something, or have gone through something. Something that has been tough. Something that you have had a hard time keeping up with. Something that is exhausting. 

And I just want to remind you (yes YOU), in case no one else has lately, that it is okay. It is okay to give yourself a break every now and then. I know it’s hard. I know you’re busy. I know you are overwhelmed. I know you’re tired. I know people are depending on you. I know it’s even just hard sometimes to be a human. But it is a little easier if you let it be—if you cut yourself a break sometimes. 

But...if you are something like an anesthesiologist, or a bridge support builder, maybe don’t cut yourself a break there. Keep doing that. Fully. Please. 

Lyme month day 22–A Little Positivity

I’ve had a few people mention lately that my blog has been less than positive. And they’re right. Because sometimes Lyme is less than positive. And that’s where I’ve been lately. But, it is for sure not always like that. So today I’m going to make an updated list of positive things that being sick has taught me recently. 

1. There are a lot of genuinely good people in the world. And a lot of people who will care a lot, if you let them. 
2. If you get a tattoo under your boob in a cursive font and then have tests and procedures done on or around your chest, you will constantly be asked what that tattoo says. And, if that tattoo is a positive message, you get to share that every single time. Even though that wasn’t the plan when you got it. (But, at the same time, maybe you should rethink your font choice next time if you aren’t down with constantly boob-lifting for better viewing while you’re laid out on the doctor’s table. Just a thought, future self.)
3. Losing friends is one of the hardest parts of being sick. And of life in general. But holding on tighter to and loving bigger on the ones you have left is one of the best.
4. There is a stillness after a particularly tough time. Kind of like the calmness on the water after a big storm. And in that stillness there is a kind of emotion that I don’t think I can explain in writing. It’s so good and so hard at the same time. But, in that stillness there is an opportunity for a fresh start every single time. That’s an opportunity that someone who is healthy may only get a few times in their life. As someone who is sick, I get it all the time. And that’s a special kind of lucky. 
5. I am a wealth of Netflix knowledge. A Netflix-opedia, if you will. I never thought this is what I would be good at at this point in my life...but what do you know? Here I am! I would like to thank Steve Jobs for creating my iPad, the inventor of Netflix, and also the ticks that bit me, for getting me to this point. 

I could keep going. And I probably will at some point. But I just wanted to give you a few for now since I’ve been a negative nancy lately. And, I would say that I’m sorry for that. But I’m not. I’ve said from the beginning that I was going to be real here, and that’s what I’m doing. Things are not easy right now. I’m not always positive and inspirational. But I CAN always find something good in every day. And I just wanted to leave you with a few of those things today. Thanks for sticking around. Xoxo

Lyme month day 21–Survivor vs Survival

Sometimes I feel like a survivor. I feel like I’m beating this thing—I’m beating all of these things—with a strength that I’m finding down inside of myself somewhere. I feel like I’m going to be okay. I feel like I have a glimpse of what life used to be like. I feel like I can breathe again. And I feel like I’m fit—like I’m allowed—to talk on the subject of how to get through something like this because I’m actually going to get through it. 

Sometimes I feel, instead, like it’s all just survival mode. I feel like I’m grasping at everything I can just to make it through the day. I feel like I can barely keep my head above the water. I feel like the language that is being spoken around me—the language that I have known my entire life—is foreign to me. And it takes every last ounce of energy just to keep up. I feel like I’m just going through the motions. I feel like I’m not the one to talk about making it through because I’m not sure that I’m going make it. 

It’s crazy how to two words that are seemingly so similar can evoke such different emotions. How one can make me feel like I’m the toughest thing in my life and the other can make me feel like I’m nothing against the toughest thing in my life. How one can make me feel like I’m in first place and the other can make me feel like I’m being lapped for the fifth time. The difference is extreme. And the heartbreak is extreme when I go from one to the other—from survivor to survival. 

But when you really think about it, both are important. A survivor can’t be called a survivor without first having survived something. So I need these survival mode days in order to get to the point where I’m truly a survivor.

And I will get there. One day I’ll get there. And if you are in a back and forth between survivor and survival mode, you will get there too. I know it. 

Lyme month day 18–Then It Will Make Sense

Today I was talking to someone who doesn’t know much about Lyme. And when I say they don’t know much about Lyme that is not my own judgement; they said to me “I really don’t know much at all about Lyme.” 

And it got me thinking. 

It’s easy to feel like there is a lot of awareness surrounding something that is important to someone in your life. If you are friends with me on my social media, or even maybe friends with me in real life to an extent, you see a lot about Lyme. You probably think that it’s crazy that someone wouldn’t know anything about it. And you may even think that this push for awareness—from me and from humans in general—is unwarranted because you see so much out there about it. It seems like I’m talking about it all the time. And you may not understand why I am so adamant that no one understands and that more awareness is so crucial to get people more help. 

And I understand that. I really do. 

If I’m bombarding your viewing space with it, it IS going to seem like it’s everywhere. If you’re clicking on things that I post about it, you’re going to start getting ads about it too, and then it’s going to be even more places. It makes complete and total sense that it’s going to seem like I’m being crazy in saying that there’s no awareness or nothing out there talking about it. 

But then you will run into someone like I was talking to today. Someone who does not know me. Someone who knows nothing about Lyme. Someone who saw a tick in real life for the first time last week. Someone who is desperate for knowledge and asking all the questions. Because they are scared. Because they don’t know. Because someone like me is not right in front of them like I’m right in front of you. 

And then you’ll see it differently. And then it will make sense. 

So yes, I may be drowning you in awareness and stories and facts—especially this month every year. But if I can drown you in all of it, maybe you can hold onto enough of it that you can share some of it with someone else who needs it. 

I’ve said it before and I’ll say it a thousand times—it takes us all. 

Lyme month day 16–“triggered”

I did not have anything traumatic happen to me today. I had a pretty “normal” day. I even spent some time with a friend. I am in one piece. From the outside I look pretty average. But tonight I’m feeling very triggered. 

Now, before we talk about me, let’s talk about something super important—the word triggered. It’s a super tricky one. People tend to throw it around super nonchalantly; “ew there’s a tomato on my sandwich—I’m triggered.” And, let’s be real, those of you who know me in real life know that I vehemently despise tomatoes (and that’s putting it nicely) but I also know that talking about something you don’t like on your sandwich is not the right way to use the word triggered. It’s a serious word, with serious connotations, that has been colloquialized as something much less serious. 

A lot of times people use the word to mean that something simply causes some sort of negative emotions for them. Like that tomato on their sandwich. Or something political that they are offended by on facebook. Or a picture that they don’t want to see because they think it’s weird. Or something that upsets them a little or makes them cringe. 

When, in reality, being triggered means that you are being brought back to something that initially caused a trauma in your life. 

A trigger can be activated by any of your senses and it’s super personal and specific to you, as the person experiencing it. The trauma was yours and the trigger is yours. 

Today I had a monitor placed on my chest in the exact same spot that my first port was. The smell of the prep pad that the nurse used was the same smell of my port preps. The monitor has a dressing on it that sticks out of the top of the neckline of my shirt like my port dressings did. It itches like my port dressings did. My seatbelt rests on it just like it rested on my port. I get a lump in my throat every time I look in the mirror and see it. And I’m in bed, in the dark, early tonight so that I don’t have to look at it anymore today.  

It’s not my port. I know in my heart that it’s not my port, but in my brain for half a second every time I see it or feel it I go back. I go back to the pain, the fear, and the uncertainty of those days. I go back to waking up covered in blood that first night. I go back to the day lying on the table trying to save my first port so I didn’t have to get a new one. I go back to the handprint bruises from manually trying to flip it. I go back to the days of praying and crying for blood so that I just knew it was working. I go back to the burning pain when the medicine escaped into my chest. And I try my hardest not to go back to the day that I did have to get a second one. 

I go back to all of it. 

And, it may seem crazy that I’m writing about it when I’m straight up telling you that it’s upsetting me. It may seem counterproductive to talk about something that is clearly taking me back to days and times that I don’t want to remember. But in my case, I need to remember. It’s painful. Oh my god, it’s painful. But if I don’t remember those hardest days of my life, I won’t remember that I can get through these days too. I won’t remember that I can do anything. 

And, thankfully, this new device will only be here for the rest of the week. 

Then, hopefully, I will go back to looking in the mirror and seeing strength on my chest instead of fear. 

Lyme month day 15–Six

Six years ago today I got my first port and started IV treatment for the first time. Three days after I walked at my college graduation. I had just accomplished so much but still had so much ahead of me. 

Here I am six years later. A scar on each side of my chest to show for that time of my life. A heart so full of so many emotions and a body so full of so much sickness. I have accomplished so much but still have so much ahead of me. 

This journey is a crazy one. 

But I’m feeling thankful. Anxious. Uncertain. Tired. And even a little sad. But thankful. Always thankful. 

Lyme month day 14–A Trendy Disease?

I talk a lot about my Lyme. I talk a lot about Lyme in general. But there is one thing that I have always kept kind of quiet about, and that is the idea that Lyme is a “trendy disease.” 

I first heard this idea around the time that Yolanda Hadid came out with her, and her children’s, Lyme story. Since then, multiple other celebrities have announced that they have Lyme—some even announced that that’s why they have disappeared from the spotlight for long periods of time. And every time a new story like that comes out, the comments are flooded with the idea that Lyme is a “trendy disease” and that’s why so many people “suddenly have it.” I even read a post once that went as far as to say that people were going to start saying they had Lyme just to have what the famous people have. I wish I still had a screenshot of the post; I took a screenshot with the intentions of blogging about it but must have deleted it. But just believe me when I tell you how ridiculous it was. The idea that someone would think that a disease—any disease—would be “trendy” is insane and beyond my understanding. 

But it also makes me wonder, do people really think that? Does anyone in my life think that? Does anyone I know think that having Lyme is just the cool thing to do these days? Especially where I live, a lot of people have it. A lot of people I know were diagnosed before me, and I know of a few who were diagnosed after me, too. But does anyone really think—could anyone really think—that someone would say they have Lyme just to say it? Just to fit in with the cool kids? 

Well, if you were ever on the fence about whether Lyme was trendy, let me help you hopefully make a decision one way or another. 

Waiting years for a diagnosis while being told you’re crazy is not trendy. 

Giving up, or putting a hold on, your life plan is not trendy. 

Watching everyone succeed around you while you’re sitting still is not trendy. 

Not knowing what you’re going to wake up to the next day is not trendy. 

Having to swallow more pills than you can fit in the palm of your hand is not trendy. 

A tube in your chest is not trendy. 

Being afraid to go to sleep for fear of not waking up is not trendy.

Being covered in scars is not trendy. 

Losing your friends, your relationships, and your hope for new ones, is not trendy. 

The guilt of needing help—physically, monetarily, emotionally—is not trendy. 

Relentless pain is not trendy. 

Being. Sick. Is. Not. Trendy. 

End of story. 

Lyme month day 13—A Challenge

Sometimes I struggle to know when someone is legitimately asking me about myself and my health because they want to know the answer and when they are asking me because they think they are supposed to.

More often, I struggle to know when I should tell the truth and when I should give the answer that I think people want to hear. 

I was having a conversation with a friend the other night about this topic. I was telling her about another conversation that I just had where I told the truth—something I don’t normally do when someone asks how I’m doing. (Believe it or not as you sit here and read my brain pouring out through the keyboard for 31 days straight.) In that particular conversation that I was telling her about though, I didn’t initially tell the truth because I thought the person wanted to know it. I told the truth out of frustration. I was tired of the opinions that were being thrown at me. I was tired of the fact that the conversation would. not. end. And I was tired of the fact that I felt like the person I was talking to saw nothing else to talk about with me besides my health. So, I started giving the answers I don’t normally give. I started giving the full story. I started telling the truth. 

And honestly, I immediately felt guilty after the conversation was over. I felt like the person I was talking to did not deserve the response that I gave them. But then I thought about it for a second and realized I needed to stop. Stop feeling guilty. Stop beating myself up. I spoke to them respectfully. And that “response I gave them” was just the truth instead of an easy answer. And that truth is my life. Why should I feel guilty for telling someone about my life? Sure, my initial reason for telling them was not necessarily right. I told them out of frustration with the way the conversation was going. I used it as a “well you won’t stop asking, here have this answer then...” moment. That was wrong of me. And that part I do still feel bad about. But the answer that came out of my mouth is not something I need to feel guilty about. 

I think I will always struggle to know the difference between someone who legitimately wants the real answer and someone who just wants an easy one. And, even though I know I shouldn’t feel guilty—even though I can tell you time and time again that I shouldn’t and you shouldn’t either—I probably will continue to air on the side of “I’m doing well, thanks!, “oh I’m just waiting til my next doctors appointment” and the ever popular “yeah it sucks, but I’m making it!” 

It’s an ongoing struggle, but I know I’m not alone in it. 

So here’s my challenge now for you: if you ask someone how they’re doing, whether they are sick or not, mean it. And tell them that you mean it. Tell them that you want the real answer. Because chances are, they aren’t giving it to you—and chances are, they want to. Be that person that lets them. It matters. I promise. 

Lyme month day 11–Sometimes

Sometimes I forget that I’m sick. 

Sometimes I look around me and I forget that not everyone is walking around feeling the same way that I am. 

Sometimes I forget that the way I feel is not normal. 

Sometimes I forget that I haven’t always felt this way. 

Sometimes I forget that I don’t remember not feeling this way. 

Sometimes I forget that when I stand up there is distinct possibility that my body is not going to respond the way I want it to.

Sometimes I forget that my hands don’t work the way I need them to. 

Sometimes I forget that every day I’m different. 

Sometimes I forget that I can’t just go to the doctor and get medicine and feel better. 

Sometimes I forget that I’ve felt this way for almost half of my life. 

Sometimes I forget that this is my reality. 

And then sometimes I remember. 

And that’s when I wish I could forget.