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.