That's a wrap!

Well friends, we made it. We made it through another Lyme awareness month together.

I hope that you learned something. I hope you are walking away from this Lyme awareness month with some sort of knowledge about Lyme that you didn't have before--even if that knowledge is just that you absolutely want to do everything in your power to never get it. And, if you did learn something, I hope you will take it and share it with a friend. I hope you will teach someone what I've taught you. It takes all of us.

If you have Lyme too, I hope you are walking away from this month feeling a little less alone. I know how scary it is. I know how lonely it is. I know how bad it can be. But I also know how powerful it can be to know that someone gets it. So I hope you can walk away from these posts this month knowing that I get it. You are not alone.

If you have someone in your life with Lyme, I hope you are walking away from this month having learned a little more about how they are living their Lyme life. I know their world is confusing. I know your part in it is confusing too. But they need you. We need you. I hope my words this month have given you a deeper understanding of how your person feels. Be there for them.

Thank you. Thank you so much for taking this journey with me. If this is your first Lyme awareness month that you've been here for, thank you for joining me. If you've been here for the past years, thank you for coming back. You all make a difference in my world and I wouldn't be doing this without you.

Here's to making it through another month and here's to a year of strength, health, and positive changes until Lyme awareness month next year!

1 more day.

With only one day left in this month after today, I decided to look back on everything I've written so far this month. And what I saw made me a little sad for a second. What I wrote this month was exactly what I didn't want to write.

I didn't want to be negative; I wanted to spread awareness. I didn't want to be sad every day; I wanted to spread positivity. I didn't want to tell you about how bad I felt every day; I wanted to tell you about how to be strong.

But then I realized that what I wrote this month may not have been what I wanted to write, but it was exactly what I needed to write. I promised back at the beginning of my blogging adventure a few years ago that I would be real and honest, and that's exactly what I did this month.

Right now I don't feel well, and that's what I told you about. Right now I'm not always 100% positive, and that's what I told you about. Right now I'm sad sometimes, and that's what I told you about.

So yes, this month was different. But I hope I did succeed at spreading awareness. If nothing else, I hope you took away from this month that it is worth taking every possible step you can to not end up in a similar situation.

You are worth it.

Thank you for sticking this month out with me and making my battle feel worth it, too.

Some days really hurt.

Some days really hurt.

My head really hurts. (My head always hurts.) My neck hurts where it's trying to hold my head up. My hands hurt. Whether I'm using them or not. My eyes hurt. My skin hurts. My brain hurts.

But most of all my heart hurts. My heart hurts because, no matter what, when my head hits the pillow at night, this is all still real.

It's not okay.

There are two very different extremes that Lyme takes me to--sometimes I feel like I'm trapped in my body. Sometimes I feel like I'm completely outside of it.

Sometimes it feels like my skin is too tight. Like I can't move. Like if I were to move my skin would rip open. Even the seams of my clothes leave marks on my skin. My anxiety creeps in because I am legitimately trapped in the vessel that is fighting against me the most. I can't take my skin off. I can't get out.

But then other times I feel completely outside of my body. Like I'm floating above it while it goes on without me. Like I'm disconnected from it. Like it's working separately from me. Like I can't control it. Like it's not mine. There's a separate kind of anxiety that comes with that feeling because even though it's my body it doesn't feel like it.

There's rarely a happy medium. There's rarely a day when my body feels like it's not only mine but it's okay that it's mine.

And so, when people ask me what my biggest symptom is, I want to tell them "my body."

My body is what's wrong. My body is not okay.

The one thing I'm supposed to be able to rely on--to depend on--is betraying me. And no matter how you look at that, it's not okay.

It finds a way.

Lyme has this weird way about it. It finds its way into everything. Everything. You can't go anywhere. You can't do anything. You can't talk to anyone. It always comes up.

Sometimes your body is the culprit. You can be going along, minding your own business, and it reminds you in the most vicious way--a stabbing pain, a suddenly numb arm or leg, words you all of a sudden can't remember, blacking out in public, whatever it may be.

Sometimes other people are the ones who bring it up. Sometimes it's because they know you have it; sometimes it's because they have it; sometimes it's because they've heard of it or read about it lately. Whatever it is, there's always the punch-in-the-stomach feeling that comes along with hearing it come up in conversation.

You can't escape. No matter what you're doing. It finds a way in.

Lyme always finds a way.

26.

I have started writing probably five different blog posts today and deleted them. I can't decide what to talk to you about. I can't decide how I'm even feeling or what I want to tell you. So let's make a list. Let's make a list of 26 (because today is the 26th day of the month) random things to be happy about.

1. Sunshine. Especially after what seems like a million days of clouds and rain.
2. Friends who get it. Whatever your "it" may be.
3. Chinese food.
4. Air conditioning.
5. Making cupcakes for other people. Or with other people.
6. Driving with the music up.
7. Sending random "I love you" texts to friends.
8. People watching.
9. Making plans with a friend.
10. The stationary aisle.
11. Road trips.
12. Seeing someone succeed.
13. Frozen kit-kats. Or any frozen chocolate. Except rolos. Those hurt your teeth.
14. A color-coded calendar.
15. Hugs.
16. A new tube of toothpaste.
17. Paying in exact change.
18. A fully charged phone.
19. Someone who will just listen when you need it the most.
20. Discovering that your favorite old movie is being played on tv or that it's on Netflix.
21. Leggings.
22. Family. Even when they are annoying.
23. Walking through an awkward part of an conversation in public and being with someone else who caught it too.
24. Remembering that you bought your favorite drink and it's waiting for you in the fridge.
25. Realizing how lucky you are.
26. Lists.

So, there you go! 26 random things to be happy about. I hope some of them are relevant in your world. And I hope they make you think about other things to be happy about, too.

No matter what, there are always reasons to be happy.

"Just be patient"

Today I was told--by my doctor's office--to "just be patient."

"Just be patient."

Okay. I'll do that. I will be patient.

I will be patient while I watch my symptoms come back and I can't do anything to stop them.

I will be patient while I put more and more medicine into my body, just to pass the time until I can get the treatment that I really need.

I will be patient while I have to put the fate of my own body in other people's hands.

I will be patient while the inside of my body is slowly, and sometimes not so slowly, being taken over.

I will be patient while my life is on someone else's timeline.

I will be patient while my life continues by me without me in it.

Okay. It's fine. I'll be patient.

Please.

Sometimes when I write these blog posts I am writing specifically about myself. Sometimes I write more generically. This one I am writing because it applies to me, definitely, but I am also pretty sure that it is relevant to most everyone with Lyme. Or anyone who is chronically sick.

I definitely don't think I'm alone when I say...please don't forget about me.

As dramatic as that probably sounds, it's not at all meant to be that way. It is a legitimate feeling when you're living the Lyme life. Being left behind becomes a semi-normal thing, but it definitely doesn't get easier. And it's definitely something I don't want to happen.

Please don't stop asking me to hang out. Sure, I might have to say no sometimes, but I am going to try my hardest to say yes. And, if you are always doing things that I have to say no to, maybe we can figure out something together that I can say yes to! I'm not dead, I'm just sick. There are things I can do. And I want you to want to do them with me.

Please don't assume that just because I'm quiet it means that I'm not having fun or that I'm being rude. And please don't stop inviting me places because I'm quiet. I don't have all the energy that you do. My brain gets overwhelmed. My senses get overwhelmed. My headache takes over. I get dizzy. But I want to be out because it matters to me. I'm not giving up on it, so please don't give up on me either.

Please don't stop telling me what's going on in your life. Yes I have a lot going on in mine, but that doesn't mean I don't want to know what's going on in yours. Actually, it means I want to know even more what's going on in yours! I don't want to talk about myself all the time. Let's talk about you!

I know that having a person in your life with Lyme is not always the easiest. I know it's easy to lose them in the shuffle because they can't keep up. But, please keep in mind that being the person with Lyme isn't easy either.

And friendship is precious, no matter if one side of the friendship has Lyme or not. Just because I'm sick our friendship doesn't change. It matters.

Please don't forget about me.

Please don't let it happen to you.

If you asked me what I'm bad at I would tell you a quick answer; I am bad at math.

I am also really bad at asking for help when I need it.

But tonight, I'm asking for help. Not only for myself, but for you. Today I'm not writing anything new for you; today I can't do it. But today I am inviting you to look back through my blog and read my past posts. Whichever ones catch your attention. Any awareness is good.

Help me by helping yourself. Don't end up in the same situation I'm in.

Please don't let it happen to you.

Herxing 102.

One of the other years that I wrote Lyme month blog posts, I wrote a post about herxing. I went back and I read that post, and realized that I really only gave you half of what it really is. So I'm going to write another one for you. So, as a follow up to a not so fantastic herxing 101, here is herxing 102...

Herxing, or having herxheimer reactions, happens when your body is introduced to a new treatment or medication and your blood and tissues are flooded with the toxins that were previously just hanging out in their hiding places throughout your body. Then, your body reacts to the fact that it's being taken over by all of these toxins and it tries to get rid of them as fast as it can. Seems good in theory, right? But, in reality, the body can't react fast enough to it's own freak-out that it's having, and instead of just killing off the toxins, it starts killing off the toxins' host cells, too. In response to that, your body goes into defense mode--defense mode for the body means a vicious inflammatory response. (If you've seen the movie Monsters University, picture the scene where they are running through the place with the little spiky things that make them puff up if they touch them. The way they look after they've touched them...that's what I picture herxing to look like. Except not nearly as cute.)

The other problem with herxing is that it doesn't just happen in response to medication that you are taking for Lyme. For example--you get an ear infection, you go to the doctor, they give you antibiotics, you come home and start taking them, two days later your Lyme symptoms are out of control. Why? Why are you even more sick when you just got medicine a couple days ago? You're herxing. The Lyme bacteria reacted to the antibiotics even though the antibiotics were not even there for them. (Just like those Lyme bacteria, right?! Thinking everything is about them!)

During a herx, the reaction is different for everyone--just like Lyme in general is different for everyone--but some general herxing symptoms are: increased fatigue, increased joint and muscle pain, skin rashes, irritability, extreme dizziness, trouble sleeping, migraines, metallic taste in your mouth (or in my case it tastes like I'm eating a sharpie), chills, nausea, heart palpitations, bone pain, and increased neurological symptoms (especially confusion).

Weirdly enough though, even after I just listed all of those not so fun symptoms, a herx isn't necessarily a completely bad thing. It's a completely bad feeling thing--100% yes. But it isn't a bad sign. It means that the medicine is getting somewhere. If it's a short-term antibiotic for a non-Lyme related thing, it's going to be gone soon anyway, and doesn't really make a difference in the long run. But, if it is the reaction to the beginning of Lyme treatment, a herx almost feels worth it because it means something is happening.

It's painful, it's awful, but it's something. And in order for Lyme to die, something has to happen.

"It's worth it."

"It's worth it."

It's something I tell myself every single day.

It's worth it to push myself out of my bed to do something with a friend just so I'm not alone. It's worth it to walk the few extra steps with someone just because I don't want to tell them that I'm hurting. It's worth it to listen to someone else talk about their story just so they know they aren't alone. It's worth it to put myself through hell, treatment wise, because something has to work at some point.

And I'm not writing this right now because I think otherwise. I haven't changed my mind.

But, I have been thinking about it lately. And thinking about how it's kind of sad. I shouldn't have to think about every single little thing before I do it and wonder whether or not it's going to be worth it.

...am I going to be able to move afterwards?

...is it going to flare my symptoms?

...can I get through it without crying?

...will I pass out?

...can I do it with the medicine I'm on?

...will there be someone there who knows I'm sick? Just in case.

...can I handle today?

...can I fake it today?

...is it really worth it?

It's such a weird feeling. It's such a weird thing to have to think about before every thing you do and every decision you make.

But, most of the time the answer is yes. Yes, it's worth it. Living with Lyme is hard. But living in general is pretty good. So pushing through is worth it.

It's worth it.

Letting go of control.

You know what's hard? Letting go of control.

You know what you have to do a lot when you are sick? Let go of control.

You have to let go of the idea that your body is going to look the way you want it to--Lyme wrecks your body, physically. Inside and outside.

You have to let go of the idea that you're going to get everything done in a day. You aren't. You just aren't.

You have to let go of the idea that you are going to be able to keep up with your friends. You aren't like them anymore. They are probably going to leave you because they don't understand that you can't keep up. And you have to let go of being upset about that. It's better that way.

You have to let go of the idea that you can do everything on your own. (This is the hardest one.) You have to let people help you. You have to believe that they actually want to. You have to let go of the fear. You have to breathe.

You have to let go of the idea that your life is going to be how you saw it. You have to also let go of the upset that happens so easily when someone reminds you of the fact that your life isn't how it's "supposed" to be. Your life is how it is. That's all there is to it. And that's all there can be to it right now.

And most importantly, you have to let go of your fear of letting go. It's hard. It's so hard. And I can't sit here right now and tell you how to do it, because I haven't done it. But I can tell you that I'm working on it. And I can tell you that it's important. And if you're working on it and it's a struggle in your world too, you aren't alone.

You can do it. I know you can.

10 more things that I, as your friend with chronic Lyme, want you to know.

I looked back at my blog today to see what my most read post was. The answer was, by far, "10 things that I, as your friend with chronic Lyme, want you to know." I've also done a part 2 to that post. So I thought I would do a part 3 to it, too.

1. Yes, I am still sick. Yes, it has been years. No, it hasn't gone away. I am just as confused about it as you. There is no making sense of it. Yes, I have written this in all three of these posts. It is the number one question I get. It is the number one thing that people talk to me about. So it's the first thing I'm putting on this list.
2. I am scared, but I am not giving up. By any means. This life is crazy, but it's nothing I am giving up on. There is too much good around here. And too many hot doctors that I haven't met yet.
3. I can't just choose a doctor. Choosing a doctor is not just like choosing socks in the morning. Not everyone will treat Lyme. Not everyone believes in Lyme. Finding a doctor is a battle in itself.
4.  Taking medicine makes things worse before it makes things better. Not taking medicine also makes things worse. Telling me that medicine is bad for me also makes things worse.
5.  Yes, I really am tired 100% of the time. Yes, even if I just woke up. Yes, even if I'm lying in my bed. I am tired. All. Of. The. Time. My bones are tired. My brain is tired. My whole body is tired. I will push through it, but it really is so real.
6. If I'm telling you about my Lyme life in real life, I trust you immensely. I share my story here, but I don't talk about it to many people individually. It's a very big part of my life but it's also not everything that I am. I like to keep it separate as much as I can. So if I share it with you--if I let you in--it means I really trust you.
7. My clothes hurt. They really hurt. Anything that touches my skin hurts. If I look put together during the day, it is a big accomplishment.
8. I know that I say thank you a lot. But I mean it every single time. I know that my life is messy. I know that being friends with someone who has Lyme is a lot to handle. But if I'm thanking you, please accept it. Don't blow it off. I really mean what I'm saying to you.
9. I want nothing more in the whole world than to be healthy again. Doubting that is the worst thing you can do to/for me.
10. Above everything else--the pain, the confusion, the fear, the uncertainty, everything--I am grateful. I am so grateful. Being sick for so long, so intensely, has taught me more than I ever could have learned otherwise. And brought me the best people. I am forever grateful for my life. As crazy as that sounds. As crazy as it all is.

Laughter.

Today I watched a video about Aly Hilfiger and her journey with Lyme. (P.s. if you haven't watched it yet, you need to. Stop what you are doing right now and go watch it. Yes, I'm saying her video is more important than my blog. I mean, come back here afterwards, but go listen to her first. Do it. Her mission to spread awareness is everything.) And she talked about the importance of laughing in between the tough times, which I fully believe in. I absolutely, 100% believe in the power of laughter.

So, before we go any further, I'm going to tell you my favorite joke. Ready?

What do you call an old snowman?

...water!

You're welcome. My mom was a first grade teacher for a bajillion years. I've got all the good jokes.

Do you need another one?

What do you call a bear with no teeth?

...a gummy bear!

Okay, now that we've established that I'm hilarious, we can move on.

You know what some people don't get about laughing through the pain? Just that. That it is possible to laugh while you're still in pain. It's possible to laugh while you're struggling. It's possible to be happy when your world is less that perfect. It's possible to smile when everything around you is chaotic. And, more Lyme specifically, it's possible to keep laughing even when your body, your brain, your everything is being eaten alive. Just being you're laughing doesn't mean your battle is any less real.

People on the outside don't always get that, and sadly, people on the inside don't always get that either. Some people who are sick aren't able to look past the negative and realize that just because you're sick doesn't mean you can't make the conscious effort to keep laughing. You don't have to keep a frown on your face to validate your pain. You don't have to keep your head down to make your struggle seem more real.

Laugh. Just laugh. You're going to do enough crying throughout your days. Laughing is always the best medicine.

Thank you.

I have started writing probably 5 different posts now about 5 different things and erased them. I just couldn't figure out what to write about for you tonight. And then I started thinking about it--I'm not just writing this for you, I'm writing this for me too. Sometimes I get so caught up in feeling like I need to write something that you will want to read, or pull myself together to write eloquently for everyone who is reading this. But I don't need to always do that. This is my blog. This is for me too. I need to think about me too. What do I need to write for me tonight?

The answer to that question is much more simple. I need to say thank you.

My life is real messy right now. I'm sick, I'm stressed, I'm emotional, I'm tired. I'm what you would call "a hot mess." Hot meaning 99% of the time I am sweating because I am also weaning off of one medication to prep myself to go on another one.

But you know what else? I am so thankful. Sometimes I get so overwhelmed with how incredible I have it. Behind all the pain, squished between all the crazy symptoms, I have the best people in my life. I say thank you probably 100 times a day and it doesn't feel like it even brushes the surface of how many times I should be saying it.

So, let me say it again. Thank you.

If you are the friend that doesn't talk to me about my Lyme because sometimes I just want to talk about other things--thank you.

If you are the friend that brings me gluten free cookies because you know that sometimes I just need cookies in my life--thank you.

If you are the friend that texts me "I love you" reminders--thank you.

If you are the friend that puts up with my late night super emotional text messages because I just need someone who gets it when things are the scariest, and you truly get it--thank you.

If you are the friend that checks on me when you haven't heard from me all day--thank you.

If you are the friend that tells me that I am going to be okay when I feel like I'm going to be everything but okay--thank you.

If you are the friend that drives around with me with the music up, singing at the top of our lungs, forgetting all the bad things--thank you.

If you are the friend that is reading this right now--thank you.

Yes, you.

Thank you.

Tomorrow is another day.

Today I can't do it.

Today I can't write for you.

I can't tell you about my Lyme life. I can't tell you other things that make me more than my Lyme life. I can't come up with a fun list for you. I can't tell you a story.

Today I can't do it. My brain won't do it. My hands won't do it.

And that is okay. Tomorrow is another day.

Today.

Before you start reading this, I need you to know that I am not writing this for pity. I am not writing this because I want you to feel bad for what I'm about to tell you. I'm writing this because I want you to know this part of the Lyme world too. I told you from the beginning of this blogging adventure that it was going to be raw and real. I told you I wasn't going to hold back the ugly stuff. And that's what today is. Today is a hard one. Today is a real one.

If you asked me what I did today, I would tell you I cried.

Yesterday I took my dog to dog fest, I got some work done, I hung out with my friend, you know--normal stuff. Today, I cried.

I woke up this morning crying because I had an anxiety attack in the middle of the night. And, after an anxiety attack in the middle of the night, sometimes you just wake up crying. Out of your control. You wake up with tears falling down your face without knowing they are happening. They're just there. Because that's what anxiety does.

Then I cried because I felt like I was actively being eaten alive by my Lyme from the inside out. I'm so swollen I can barely fit in my clothes, my hands are so swollen they can barely bend, my face is so swollen it has indents in it from my glasses. My bones feel like they are on fire. I feel like I have red ants crawling through the fibers that hold my body together into a human.

Then I cried because I went to the store and forgot what I was there for by the time I got there.  My brain was completely blank. Nothing. No idea why I was there.

Then I cried because the reality that I can't save someone from this hell that I'm living in hit me again today. And sometimes that reality is the hardest to swallow. Especially when I would have given anything for someone else to be standing in front of me offering to help me. When I would have given anything to be in the opposite position that l am in now.

Then I cried because I was crying. And I realized that all I had been doing today was crying.

I am not a sad person. I'm happy. I completely appreciate all the beautiful things in my life. I have more beautiful people in my life than I know what to do with. But this Lyme life has a way of pulling you to a place sometimes where all you can do is cry. Sometimes it's because the bacteria is in the crying part of your brain. Sometimes it's because you have a lot going on. But regardless, it's unrelenting and it's exhausting. And that's what it did to me today.

Today I cried.

"My dog had Lyme once..."

Today I was at an event with my puppy and I passed by a table that was about Lyme prevention for dogs. A whole table. About how to keep your dog from getting Lyme. Part of me didn't even want to look (and that part of me should have listened because WOW on the giant picture of the tick that they had front and center on their display) but I decided to look as I walked by. There was so much information. So much information on how to keep your dog healthy and free from Lyme. 

Why? 

Why is that possible? Why can we keep our dogs Lyme free so easily, but Lyme in humans is such a big problem? Why can my puppy get not only tick protection but a lyme vaccine? Why could my old dog get a Lyme test done right by the vet in my living room and have an answer within 2 minutes that told us that he did have Lyme and then get antibiotics that same day, no problem? Why is it so easy? Just because they are animals? I don't say things aren't fair very often...but there's no way you can tell me that's fair. 

I love my puppy more than I love most things, but I don't love the fact that I can't get the same treatment as him. I'm by no means saying our animals shouldn't get this treatment...I'm saying 100% that humans should be getting the same thing. If it exists, it should be able to exist for humans, too. 

No matter how you look at it, it doesn't make sense and it isn't fair. 

Friday the 13th.

Today is Friday the 13th, a day normally associated with bad luck. But, if you know much about me, you know that I was born on Friday the 13th, making it a pretty lucky day in my world! I also have a quite a few friends with birthdays on the 13th in different months, and those are pretty lucky days in my world too!

So, I thought today I would talk about luck. It would be easy to sit here and tell you why being sick makes me unlucky. How much Lyme sucks. How much I hate it. How much it has rocked my world, in a not-so-fantastic way. But I'm not going to do that. Instead I'm going to tell you 5 reasons why my life as a 25 year old girl with Lyme makes me the luckiest girl in the world.

1. I appreciate this world and the life I live in it SO much more than I would if I was walking through it like I used to before I was sick.
2. I have the best friends in the whole world and they make this battle a little easier just by being in it with me. They've proven that they aren't going anywhere, no matter how sick I get, and that's not something they signed up for, but something I will appreciate forever.
3. I have met some really hot doctors.
4. I have found a job where I get to share clothes that make me feel better about myself with ladies who also, in turn, feel better about themselves! And that is such a blessing that I never expected but will never take for granted.
5. I get to spend so much more time with my wonderful, beautiful mama who is exactly what I need to help me survive this hell that we're walking through. I may be 25, but I am forever thankful for my mom and everything she does for me everyday--Lyme wise and otherwise.
6. This is a bonus one, but it's just as important as the others. Without my Lyme, I wouldn't have my blog. And, without my blog, I wouldn't have you all reading it. And without you all reading it, I wouldn't have the happiness in my heart that you bring me. So, thank you. Thank you for being part of my lucky.

So yes, Lyme sucks. I'm not going to tell you that's not true. But if you have the option of focusing on the fact that you're unlucky or the fact that you are so lucky (which you always do) it's so worth looking at why you're lucky. It makes a world of difference in the long run.

It's not always easy. But it's always worth it.

Lyme facts.

Yesterday's post was about a lot of emotions. Today I want to talk about the furthest thing from emotions--facts. I've talked before about Lyme symptoms, but it's been a while. And if there's only one thing you read on my blog and it's this, I will be happy. If you read this post and realize that you've been experiencing one of these things and know that it isn't right and it leads you to a diagnosis, I will be happy. If you read this and feel like you aren't alone, I will be happy.

One important thing to note before reading these symptoms is that Lyme disease occurs in stages. So these symptoms come and go. They change. Every day. Nothing is guaranteed. Nothing is certain. But all of these things point to a clinical diagnosis of Lyme disease and that is nothing to mess around with.

The most well-known symptom of Lyme disease is the bullseye rash. But, a large majority of people infected with Lyme disease never see a bullseye and, therefore, can't catch the disease early enough for quick treatment. Early Lyme symptoms mimic the flu, so it's easy to miss, especially without seeing a tick or a rash. Other early Lyme symptoms include: Bell's palsy (facial paralysis), headaches, and extreme fatigue that's out of the ordinary or not caused by things going on in your life.

Antibiotic treatment can be very effective if you catch Lyme early! This is why it's so important to check for ticks, remove them properly if you find one (I have a post on this too if you aren't sure how to do it) and take the tick itself in to your doctor to have it tested.

Late stage Lyme is a whole different story. Lyme disease is often called "the great imitator" because its symptoms imitate so many other illnesses, making diagnosis sometimes seem nearly impossible. In a majority of cases, people diagnosed with late stage or chronic Lyme are told they have fibromyalgia, lupus, multiple sclerosis, ALS, multiple forms of cancer, Alzheimer's, chronic fatigue syndrome, or any combination of these and other diseases and disorders before finally coming to a Lyme diagnosis. During the struggle to receive a diagnosis they are often dealing with symptoms such as: joint pain and swelling, muscle pain and weakness, twitching, persistent headaches, numbness and tingling, facial paralysis, dizziness, poor balance or difficulty walking, burning or stabbing pains, confusion, word loss, memory difficulty, vision change, light and sound sensitivity, mood swings, depression, anxiety, panic attacks, difficulty breathing, rib/chest pain, insomnia, chemical sensitivity, allergic reactions, weight gain or weight loss, enlarged lymph nodes, heart palpitations, and more.

Once you have late stage/chronic Lyme disease it migrates throughout your body, changing constantly. The bacteria mainly affects the skin, joints, heart, and nerve tissue (which includes the brain) but it can choose to bury itself anywhere in your body. During its life cycle, Lyme can manifest in different forms (which only respond to certain treatment), can flare up with new symptoms, or can go into remission (which is the ultimate goal). This makes attempts at treatment ultimately extremely difficult. Those antibiotics that can work for early Lyme don't work so easily at this point anymore. Treatment is much more difficult. The road is much longer.

So, please, do me, yourself, and everyone in your life a huge favor--take Lyme seriously. It may not seem like a big deal from the outside, but it is. It so is. Check for ticks. It seems silly. But it's important. Taking the time to do it is more than worth it in the big picture.

It's better to take 2 minutes now than to take years out of your life because you didn't find a tick now.

Trust me.

When you find out someone else has Lyme.

Finding out that someone else in your life has Lyme is strange. It's a feeling unlike any other, really. It brings about emotions that you don't know what to do with. It's a punch in the stomach, lump in the back of your throat, shaky hands, have to take a breath, kind of moment. It's something you aren't really ever prepared for.

It doesn't really matter how you know the person. It doesn't matter if you like them. It doesn't matter if you are friends with them or not. It doesn't matter if you will ever talk to them about it or not. Finding out that they have it feels the same no matter what.

There's the relief that comes along with knowing that you aren't alone. It's so nice to know that someone else shares your story. When you hear that someone else has been through the same thing it validates your situation just a little more. Not that you need to be validated by anyone else--but as someone with Lyme, you've been knocked down, you've been doubted, and you've been told that you're faking so many times that it's nice to hear that someone else knows what you're talking about.

But there's also a sense of sadness that comes along with it. Sadness for them. Sadness that they have felt the pain that you've felt. Felt the fear that you've felt. Felt the uncertainty that you've felt. Struggled the same way that you've struggled. Been where you've been. And also sadness for yourself. Sadness that you understand where they've been. Sadness for both of you. Sadness that you can relate. Because no one should know what you know.

There's also a sense of jealousy that you can't help but feel if they are better and you aren't. No matter how hard you try and avoid the "why me" feelings, this is the time that they tend to creep in. And then you get angry at yourself for feeling jealous. Jealousy is an ugly emotion. But goodness, it is hard to keep it away when you see someone else getting the one thing you want--their life back.

So, if reading my blog has ever brought about those feelings in you, I am sorry. I know how real those feelings are. I know how intense they are. And I never wish them on you.

The only one I do wish for you is that you always know that you aren't alone.

Ever.

5 kinds of friends.

There are five kinds of friends you need in your life when you have Lyme.

1. The listener: This is one so important. You need someone who will literally just listen. Not tell you what to do. Not suggest things that their mom's brother's mailman's sister's friend's teacher's dog did once. Not tell you that they know someone who died from Lyme. Not tell you that you're wrong. Just listen. You have enough doctors telling you what to do. You have enough people doubting you. You have enough questions being asked of you. You just need someone to listen. And it's a bonus if you're comfortable enough to cry in front of them. A friend who you can trust enough to cry in front of is a an invaluable treasure.
2. The couch sitting friend: This one is also amazing. This is the friend that invites you over to their house/lets you invite yourself over to their house/accepts it when you just walk into their house and will just sit on the couch with you because they know you can't do anything else. This friend doesn't push you past what your body is able to do. This friend doesn't try to make you keep up with everyone else. This friend accepts where you are right now instead of trying to take you to where you "should" be. This friend deserves all the couch sitting snacks.
3. The investigator: This is the friend that helps you find things that will actually help you. They do research for you. They find legitimate suggestions for you--not crazy things they've just heard of, not just quick fixes--real things that they want for you because they think they will make you better, and that's what they want for you more than anything.
4. The friend that makes you laugh: This is the friend that shows up when you least expect it and makes you laugh when you didn't even know you needed it.
5. The all of the above: This is the friend that you thought of when you read through this post and realized that they fit into all of these categories. This is the friend that is such a precious part of your recovery that you can't imagine doing it without them. This friend may have been around for years or they may be a new friend. They may be your age, they may be a younger friend that you've taken under your wing, or they may be an older one that has taken you under their's. No matter who they are, where they came from, or how you became friends, they are such a vital part of your healing.

If you have any of these friends in your life, tell them thank you. Tell them thank you for helping you through the hardest time in your life. Tell them thank you for helping you through something that feels absolutely impossible. Tell them thank you for helping you when even your own body is fighting you. Tell them thank you for helping you survive.

Tell them thank you right now.

...Thank you!

Confusing.

Being sick is confusing.

It's confusing how you can know your truth so certainly, yet someone else can so certainly tell you that it is wrong. It's confusing how you can try to stand up for yourself and get beaten down just as quickly. It's confusing how someone can look you in the eye and tell you that they can't do anything for you when you're desperately asking for help.

It's confusing how your body can so intensely fight against you when you're the only one living in it--the only one on it's side. It's confusing how you can give your body what it needs, yet it won't give you what you need in return.

It's confusing how you can live with something for so long but it still seems just as raw every single day that you wake up and realize that it's still there. It's confusing how it never feels okay. It's confusing how the fear still feels so palpable and the tears still fall so readily. It's confusing how it never gets easier no matter how much time passes.

It sucks. And it's nothing I would ever wish on anyone. If you are sick and confused, know that that feeling is valid. You are not alone. I don't understand either.

Being sick is just confusing.

Thankful.

Tonight I feel thankful.

I'm thankful for the friends I've found during my Lyme journey--the friends who didn't know me before I was sick, and love me anyway, even though all they know is sick Leigh. I'm thankful for the friends I had before I got sick and have stuck by me through it all. I'm even thankful for the friends who have left me because of my Lyme because they've taught me what really matters and what really doesn't.

I'm thankful for friends who listen. I'm thankful for friends who don't try to tell me what to do. I'm thankful for friends who ask questions. I'm thankful for friends who want to see into my world.

I'm thankful for friends who know the struggle, even if their battle is a little bit different. I'm thankful for friends who have been through their own things and are here through mine. I'm thankful for friends who don't make me fight this thing alone.

And if you're reading this, I'm thankful for you. I'm thankful that you're on this journey with me. I'm thankful that you read what I write. And I'm thankful that you're making this effort to learn about Lyme.

Thank you.

10 things.

Today I don't want to talk about Lyme. I don't want to do it, so I'm not going to do it. Instead I'm going to tell you 10 random things about me that you might not know! 10 things that make me more than my Lyme.

1. I only buy green toothbrushes.
2. I am borderline obsessed, in the least creepy way possible, with Idina Menzel. I saw her twice in one week this past summer.
3. I never use just one emoji. I always put at least two in a row. Normally three.
4. I have a birthmark on my ankle that is shaped like the Statue of Liberty. And 13 other birthmarks.
5. I collect smashed pennies and get super excited when I see a penny machine somewhere.
6. I will not walk on a storm drain or a grate on a sidewalk if I can at all avoid it. I'm convinced there are dead bodies in them.
7. I have a phobia of Popsicle sticks.
8. I love having things written down. If I could handwrite everything, I would. I love handwritten notes, addressing envelopes, having a paper planner, all of it.
9. I fully believe in sending random text messages to remind the people in my life that I love them. I am all about little reminders like that and I will never be too busy or too anything to take the time to do it. You never know when someone needs it.
10. I hate the smell of crayons.

So, there you go! 10 random things about me! Tomorrow I'll be back with Lyme things, but today I couldn't do it. And that's okay!

There's more to me than Lyme. And that is okay too.

Thanks for taking this journey with me! You are more than your struggles too, whatever they may be! Whatever you are going through, you can do it! If no one else has told you today, I believe in you.

This Body 2.0

A while ago, I wrote a post called "This Body." And, while I do feel the way I felt when I wrote that post--while I do love the body that I live in--it's also so, so very hard sometimes to live in a body that is fighting so hard against you. Sometimes it's so hard to love a body that doesn't love you back.

Tonight was one of those times.

When I look in the mirror, I see eyes that don't work the way they are supposed to work anymore. I see an eye with one pupil that is bigger than it's supposed to be. I see that same eye that falls to the left without my glasses on. And I see eyes that sometimes fill with floating Lyme bacteria when I least expect it. Terrifying, unsettling, spiral shaped monsters in my eyes.

I see cheeks that turn red when I don't feel well. Giving away our secret. Making our invisible illness not so invisible. I see cheeks that puff up on mornings when I wake up swollen. For no reason other than the fact that I have Lyme. I see cheeks that used to just be rosy and now are just angry.

I see a mouth that swells up without warning. I see teeth in that mouth that are yellow from years of poison being put through them. I see a smile that is so hard some days. I see lips that speak the words that save me--to my doctors, to my friends, to my family, and to myself as I tell myself that I am going to be okay.

I see scars--on my chest from my ports, on my arms from IVs, on my hands from IVs, and on my leg from surgeries. I see weight I don't want, in places I don't want, from years of medicine I wish I didn't have to take.

I see a body that I feel like I'm floating outside of but desperately trapped inside of at the same time.

I love the body I live in because I'm doing just that, living, in it.

But sometimes it's just so, so hard to love a body that doesn't love you back.

"All you have to do is stay alive"

Today I heard a quote that really stuck out to me. Someone said "a birthday is just a birthday--all you have to do is stay alive for another 365 days."

And while, technically, he was right--a birthday is a celebration of being alive for another 365 days--I would never look at staying alive as "all you have to do."

Being alive is nothing to ever take for granted. Ever.

Maybe it takes being sick to appreciate that, but it shouldn't. It shouldn't take struggle to know that life is precious. And it shouldn't take fearing for your life to know that you want to live it more than anything.

A birthday should be celebrating that you GOT to be alive for another 365 days. Not that you had to.

Every morning that you wake up is a lucky morning. Every night that you lay your head down on the pillow is something to be thankful for. Every friendship that you make is a blessing. And every chance to make a difference in someone else's world is a chance that you should take; you never know who needs you.

So, try something for me. Make a conscious effort to stop, take a breath, and know that in this moment you are alive and that is nothing to ever be anything less than absolutely thankful for.

Being sick, living with the uncertainty of an illness, and not knowing what your body is going to throw at you next does give you the advantage of showing you the importance of being thankful...but you can do it too. Even if you aren't sick. I know you can.

It's worth it.

Failure.

I've talked on my blog about feelings of failure before. A few times, I think. But this is a new year. I have new readers. And I have new feelings. And right now those are feelings of failure. So I'm talking about them again. Because maybe I'm not alone. Maybe you're feeling them too. And maybe you need to read this today.

Chronic illness and feelings of failure go hand-in-hand, I think. But really, sometimes life and feelings of failure go hand-in-hand, don't they? It's hard not to feel like you're failing when life doesn't go the way you expect it to. And when you're sick, it rarely ever goes the way you expect it to.

I went to college. Graduated college. Did my internship. Passed my certification exam. Did everything the way I was supposed to. And now look at me. I'm not doing anything I planned to be doing. I'm not at all where I planned to be.

It's hard not to feel like I'm failing. It's hard not to feel like everything I worked so hard for was for nothing. And it's hard not to be afraid that I will never get back to what I wanted for myself.

But I also have to be proud of myself for every day that I get out of bed when it feels impossible. I have to feel like I accomplished something when I get through a really difficult day. And I have to be happy with a good day even if it's not a day doing what I thought I would be at this point in my life.

No matter how hard it is.

So if you are sick and feel like you're failing too, you aren't. You are winning every day that you are breathing. You are the champion of your life. You can do anything. I believe in you.

Sometimes Lyme is hard.

Sometimes Lyme is hard.

Sometimes you wake up in the morning and your tongue is so swollen that you can't close your mouth around it. For no reason. No reason other than the fact that you have Lyme. Sometimes your clothes hurt. Sometimes everything hurts. Sometimes you walk across the room and the carpet hurts the bottom of your feet like it's little tiny needles piercing your skin with each step. Sometimes the sheets on your bed feel like sandpaper. So you can't escape the carpet there either. Sometimes the air even hurts as it hits your face. So going outside isn't a choice. Sometimes there's no escape from your own body. Sometimes all you need is a hug. But that will hurt too. So you don't even ask.

Sometimes you're scared. You're scared of how you're feeling. You're scared that you won't ever feel okay again. You're scared that you don't actually remember what it feels like to feel okay.

Sometimes you sleep a lot. Sometimes it's all you can do. Sometimes you wake up, move to another place and then go back to sleep. Sometimes that's all you can manage in a day. And sometimes you have to let that be okay.

Sometimes you can't talk to your friends. Sometimes it's easier to just be quiet than it is to explain how you're feeling. Sometimes you write a text message ten times and delete it every time instead of sending it because you don't want to be a burden. Sometimes you feel like a burden anyway. Sometimes means always in this case.

Sometimes you can't put the words together to write your blog. Sometimes you try anyway. Sometimes you get something like this. Sometimes your brain is a mess.

Sometimes Lyme is hard.

One Year Older, One Year Wiser.

It's been a long time since last May 1st! 366 days, to be exact. I'm a whole year older. And, I wish I could say that I'm a year healthier. Unfortunately, that's not true.

But, I do think that the phrase "a year older and a year wiser" stands even more true when you're sick. I've learned a lot this year. A whole lot. About myself. About Lyme. About life. About what matters. And about what really doesn't.

And, by the end of this month I hope that if I'm able to teach you something too.

I hope that if you already have Lyme you will leave this month knowing that you aren't alone. You are strong. You can do anything you want. Even if you have to do it from your bed, from the car on the way to the doctors office, or from a hospital bed sometimes. If you want it, you can do it.

If you love someone with Lyme, you aren't alone either. I know it's not an easy road. Loving someone who just can't get better feels like a never-ending battle that you just can't win for them. But I can also tell you, with 100% certainty from the side of the person you are loving, you are appreciated more than you know.

And, I hope that if you don't have Lyme you learn that it is 1000% worth it to take every single preventative step that you can take to keep it away. It may not seem like a big deal before you have it, but it is. Is is a big deal. It is life-altering. It's heart-shattering. It's nothing you can imagine until you live it. And it's nothing I ever wish for you. Ever.

So, as I continue my Lyme journey this month, I'm glad you're here to learn with me. I hope that at the end of this month you will be one month wiser, too.

Lyme Month--Year 3!

Well, here we are again! It's May 1st. And you know what that means? It's Lyme awareness month! And you know what that means? I'm back to blog every day in May!

But let's be real for a second before we get this party started, shall we? I've been having a really big internal (and sometimes external if I trap a victim) debate over whether or not to do this this year. I have been really going back and forth over whether or not I have anything worth sharing, let alone a whole month's worth of things worth sharing. And mostly, I have been struggling to decide if I'm okay enough to write for a whole month.

Yeah, I just threw that last one out there.

You see, life has this way of throwing things at you. Lyme life has this way of throwing things at you while it's standing on top of you and also dangling you off of a cliff while it's holding onto you with something super sharp and also stacking elephants on top of you and asking you to sing the alphabet backwards all at the same time.

And that's what is happening to me right now.

So I wasn't going to write this month. Mostly because I thought I'd be lying to you. I thought I'd be lying if I came here and talked about Lyme awareness and spread positivity while I felt all of that weight on me. I thought I'd be lying if I told you just the sunshiney parts and left out the rain. But, the fact of the matter is that in not writing I would be lying to not only you but myself. I would be avoiding the truth. I would be lying by omission. And that's just as bad. And does no one any good.

So, if you're ready for another bumpy ride this month, I'm back. Let's do this.