Thank you.

We did it! We spread Lyme awareness for another 31 days. 31 days felt like an eternity this year, but we did it. Yes we. I couldn't have done it this year without you. 

Thank you. 

Thank you for reading. 

Thank you for sharing my posts. 

Thank you for the messages I've received telling me that my blog is making a difference. 

Thank you for telling me that you're reading my blog at all. 

Thank you for telling your friends about it.

Thank you for taking the time to look further than just my blog and learning more than I can explain to you on my own. 

Thank you for asking me questions. 

Thank you for sending me pictures of your tick bite and asking me what to do. 

Thank you for making the days that I didn't feel like writing worth it. 

Thank you for reminding me that I'm not only writing for myself. 

Thank you for caring about yourself and the people in your life enough that you are willing to read my random Lyme-related ramblings every day for 31 days to help ensure that you/they never have to experience it. 

Thank you for helping me help you. 

We're making a difference. 

Thank you. 

Understanding.

When I set out on this blogging journey, one of the main things I wanted to come from it was understanding. When it comes to chronic illness, understanding is hard. To be completely honest, I don't even understand my own situation half the time, and I'm living it. So, it's hard to expect anyone who doesn't live with it to understand, either. 

But, the more I think about it, the more I realize that I don't want you to understand. 

(Wait Leigh, what?!)

I don't want you to understand the pain that I constantly feel. Because to truly understand you would have to be feeling it yourself. I don't want you to understand the struggle of getting a doctor or getting the treatment you so desperately need. Because to truly understand you would have to have experienced it yourself. I don't want you to understand the fear. Because to truly understand you would have to also be afraid. 

And I don't want you to truly understand any of that. Nobody should have to understand any of that. 

What I do want is for you to understand that there are steps you can take to make sure you don't ever really understand. You don't have to feel the pain that I feel. You don't have to go through the doctor struggles that I do. And you don't have to be afraid like I am. 

What I do want you to understand is that all of my issues started with a tiny bug. We are gigantic humans compared to those tiny bugs. They are tough, but we are tougher. 

As long as you understand that they exist, they suck (literally and figuratively), and that you can help yourself and the people around you never have to deal with what they can do...it is my hope that you will never have to truly understand. 

Babesia.

I was thinking today about how to start wrapping up this month of posts, and I realized something pretty important--I haven't mentioned what to do when you know you are sick but you are told it isn't Lyme. So I thought today I'd touch on something else you could suggest to your doctor if your Lyme test comes back negative--Co-infections. Other tick borne diseases. The "siblings" of Lyme. 

I have a couple co-infections, but the one that I have has given me the most issues, and also the one I hear about most frequently, is Babesia. I have talked about Babesia in a post before, but just quickly since the post was about co-infections in general. But I thought I'd go a little more into Babesia specifically since it's something that might help you get the diagnosis you need if you're struggling. 

Babesia, or Babesiosis, is the name for a group of protozoa that infect your red blood cells. (If you are a 90s kid and remember the Zenon movies, I am not talking about the from those when I talk about Protozoa. Though he does pop into my head every time I write it.) 

Once the bad guys are in your red blood cells they travel around your body, and they do it pretty quickly. That's something I have discovered is pretty standard with Babesia--nothing stays the same for long, which can both be both a good thing and a bad thing. The good part is that the symptom that is driving you crazy won't stick around too long before it switches to something else. The bad part is that you never know what it's going to attack next. 

Babesia, though quick moving, is pretty specific in how it affects you. In my experience, as well as in some things I've read about it, these are the symptoms I have encountered pretty regularly:

1. Heart irregularities/palpitations--This happens when the Babesia gets into your heart muscle and makes it go crazy. It can't be fixed with normal heart meds; they only cover up the symptoms. The Babesia has to be eradicated from the heart muscle all together in order to get rid of the symptoms. And, unfortunately, once it's out of the heart muscle it doesn't mean it's not coming back. This is a tricky and scary symptom. 

2. Headaches--Headaches caused by Lyme, Babesia, and other co-infections happen because your brain becomes inflamed and your intracranial pressure increases. 

3. Mood instability--Also because your brain becomes inflamed, tick borne diseases cause things such as severe anxiety, depression, confusion, etc. This can make you feel like you're going crazy when, in fact, your brain is being attacked from the inside out. 

4. Internal cystitis--This means that you have the symptoms of a urinary tract infection, but nothing is cured by antibiotics. A big issue with this one is that the antibiotics you are given for a UTI can cause your tick diseases to flare up. And if you're continually being treated for a UTI, you are continually firing everything up. 

5. Air hunger--This is a scary one too. Air hunger is feeling like you can't get get a full breath. It can feel like your lungs are being squeezed and won't expand all the way, or if can feel like your throat is tight. And sometimes it does both. It can cause a chronic cough. And it can cause panic attacks, which creates a vicious cycle. Air hunger can easily be misdiagnosed as asthma, general shortness of breath, or pneumonia. The treatment for these things can include steroids, which are dangerous for people with Lyme.

If you are experiencing any of these symptoms, and you have previously been told you don't have Lyme, but you know you're sick, ask if you can be tested for Babesia. Before I got my actual Lyme diagnosis, I got a co-infection diagnosis (not Babesia, but another co-infection called Ehrlichia), which then lead my doctors to keep looking for my Lyme. 

It's not a sure-fast solution if you're told you don't have Lyme, but it's worth a shot. 

Anything is worth a shot when you are dealing with this stuff. 

Things I, as your friend with Chronic Lyme, want you to know--part 2

1. I am capable of talking about things other than my Lyme. And I don't want it to be the first thing you ask me about. Ask me about my puppy. Ask me about boys. Ask me about Pretty Little Liars. Even ask me about the weather if you're really stuck. And then later we can talk about my Lyme. 

2. No, I'm not feeling better yet. Trust me, I will scream it from the rooftops when I am. You will know. But until then, just take my word for it--I'm still sick. 

3. Yes it hurts. Yes that procedure I just told you about is as bad as it sounds. Yes I still feel the pain. No it doesn't get easier, you just get used to it. 

4. Telling me about how great your life is doesn't make me feel better. Yes I'm proud of you and the things you are doing with your life. Yes I am happy about your relationship or your new job. Yes I'm excited for you and everything that you're doing. But I also want you to understand that sometimes it's hard for me. We can talk about it sometimes, but please don't talk about it every second of every day. I don't shove my life down your throat, please don't do it to me either. 

5. If I tell you I can't do something, it's because I really can't do it. I will push myself 99% of the time. But if I tell you I can't, or I need to sit down, or I can't hang out, I really can't. I'm not being lazy. I'm not trying to get out of doing something. I just can't always keep up. No matter how much I wish I could. 

6. It hurts my feelings when you leave me out, or leave me behind. Just because I can't do everything you can do doesn't mean I don't want to spend time with you. You wouldn't just leave your healthy friend out, so please don't just leave me out because I'm sick. Ask me what I can do with you. Or even just come hang out with me instead. It's not fun to be left in the dust. 

7. I don't need you to always tell me that I'm strong. Because sometimes I'm not. Just because I've been sick for a long time doesn't mean I'm solid all the time. Sometimes I break. And that's okay. I do my best to be strong because it's the only option I'm giving myself, but I want you to know that I'm not always good at it. 

8. Sometimes I just need you to listen. I don't always want advice. Actually most of the time I don't want advice. Chances are I know what I need to do, or why I'm feeling the way I'm feeling, or how I can fix the problem. But sometimes I just need to talk about it. Everybody needs someone to listen sometimes. I'm no different. I have doctors to tell me what to do, I don't need it from everyone. 

9. Yes I just took a nap, yes I'm still tired, and yes I'm still going to be able to sleep tonight. My kind of tired is not like normal tired. I'm tired down to my bones. I have to rest after taking a shower. I'm on that level of tired. Please don't tell me I'm lucky I get to take a nap everyday. I would give anything to not have to. 

10. I appreciate you. I don't mean to come across as rude, or needy, or snobby. I tell it how it is because sugar coating my situation doesn't help anyone. But I don't think I'm better than you, or more important than you. I know you have struggles too, and I appreciate you caring about mine. I may not always be the best at expressing it when things get tough, but I do appreciate you. 

Lyme doesn't discriminate.

I think I've hit a roadblock on the answers to "how does your Lyme affect you?". So, even though I said I would write about that for the rest of the month, I'm taking that back.

Instead, I thought we could have a little chat about the fact that Lyme, like most other illnesses, doesn't discriminate. You can get it when you're five, you can get it when you're twenty-five, you can get it when you're ninety-five. You can be born with it, or you can get it from a bite. You can get it if you're a boy, and you can get it if you're a girl. You can get it no matter where you live. You can get it no matter what you do for a living, and no matter how you live your life. If you have blood, your blood can get sick. 

You know who also has blood? Famous people. Celebrities. Actors. Authors. Athletes. Politicians. 

Ashley Olsen and Avril Lavigne have recently publicized their Lyme battles. But did you know that there is a long list of other people, in the public eye for one reason or another, who have struggled with Lyme? 

1. Amy Tan--the author of "The Joy Luck Club" 

2. Debbie Gibson--singer/songwriter

3. Daryl Hall--of the band Hall and Oates. 

4. Yolanda Foster--reality TV star 

5. Richard Gere--actor 

6. Ben Stiller--actor 

7. Jamie-Lynn Sigler--actress

8. Jennifer Capriati--tennis hall of fame athlete

9. George W. Bush 

10. Rebecca Wells--author of "Divine Secrets of the Ya-Ya Sisterhood."

11. Alice Walker--author of "The Color Purple"

12. Christy Turlington--model 

13. David Letterman--talk show host 

And, I'm sure there are even more than that out there who haven't talked about their fight publicly. But I think that list is more than long enough. And more than scary enough. 

While I was researching for this post, I read quite a few quotes from the people on the list regarding their Lyme. But the one that stood out to me the most was from David Letterman. 

He has had shingles, a quadruple bypass, and anaplasmosis/ehrlichiosis (a Lyme co-infection) within a few years. He was quoted on his show as saying that his Lyme/ehrlichiosis was "the worst of the three. I was praying for the swine flu."

...I'm just going to leave you with that. 

Confidence.

I think the hardest answer (and the one I never really talk about) to "how does your Lyme affect you?" is that it has completely zapped my confidence. 

It's hard to feel good about yourself when you feel so bad. It's hard to feel good about yourself when your body is actively fighting against you. It's hard to feel good about yourself when the medicines you have to take turn your body into something that it wasn't before. It's hard to feel good about yourself when getting out of bed is hard enough in itself, let alone doing your hair, or wearing makeup, or anything like that. It's hard to feel good about yourself when the only clothes that don't hurt you are sports bras, loose tshirts, and yoga pants. And it's hard to feel good about yourself while you have to sit and watch your life pass you by instead of doing what you worked so hard for. 

But, you know what does make me feel good about myself? 

Telling you this. 

Because telling you this might help you never have to experience the same thing for the same reason. If you think twice about pulling a tick off and just throwing it away, I will feel a little better. If you make an appointment with your doctor because you feel like something Lyme-like is going on, I will feel a little better. If you even read this and think about Lyme, I will feel a little better. 

Because, after all, the best kind of confidence doesn't come from how you look, or what you wear. The best kind of confidence is the kind you get from doing something good for someone else. And I hope everyday that I can do that for you. I'll hang onto that for now and the rest will find its way back to me in time. 

So, when you ask me how my Lyme affects me, know that it's not only physical. It's not only neurological. But it's also emotional. You can't see it on the outside. But it's there. 

It's definitely there. 

"Some neurological stuff"

When I'm asked "how does your Lyme affect you?" the second answer I will normally give is that I have some neurological stuff going on. Luckily it doesn't normally get to this point in the conversation though, because this one is a little harder to explain that just "I have a lot of pain." 

If I were to go into what "some neurological stuff" means, however, it would go a little something like this: 

Think about a time when you've been the most tired you've ever been. You know how it's hard to think? It's hard to come up with words. It seems like your brain is working in slow motion. You drop things and stumble over things because it feels like your brain isn't connected to your body. You feel like your head is in a marshmallow. You can't remember simple things that you've known your whole life. You forget where you're going. You get lost in places that should be totally familiar. You stare at things that you know you should know, but the name just won't come to you. You feel stupid even though you know you aren't. 

That. That's what it means. 

And that's something I wouldn't wish on anyone. Don't let it happen to you.