"Unemployed."

I was working on some paperwork and something struck me that never really has before--the word "unemployed." 

So many times I've had to check the "unemployed" box or said "nowhere right now" when I'm asked where I'm working. And, I've always thought of it negatively. I'm almost 25, I have a college degree and a certification, I worked for a little while after I graduated college...and now here I am. I'm "unemployed." It doesn't sound like a good thing.

It sounds like I failed. 

But then I started thinking of all the reasons someone could have to check the "unemployed" box. In my case, it's medical reasons. But it could be a number of other things. And who am I to put any negative label on the word for anyone else? And really, why am I even putting a negative label on it for myself? 

Yes, I am at a point in my life where I really expected to be working. I knew exactly what I wanted to do. 

Yes, most other people my age are working. And it's hard to always be the one that's different in that.

Yes, it's hard financially that I'm not working. It's not ideal to be almost 25 and still having to ask my parents for money. I feel guilty every single day about it and wish it were different. 

Yes, I wish I was working. Of course I do. I worked so so hard to get to the point where I had the tools and skills I needed to do exactly what I wanted to do with my life. But I'm not using them right now. I can't. But I will be able to one day. I won't always have to check the "unemployed" box.

And until then, it's okay. 

I'm not working in terms of a job, but I'm working to get better. I'm working on some projects that make me happy. I'm going to classes and working to train my puppy. I'm working on my friendships, my relationships, and myself. And I'm working to spread awareness of the ugly disease that is making me check that "unemployed" box. 

And I truly believe it will all work out. You can't sit and watch your life pass you by and expect it to work out, though. (But you can do what you need to do while you're sitting, I fully support sitting.) You have to keep pushing forward. Reach for what you want your life to be. And believe in yourself.

"Unemployed" doesn't mean hopeless. It's not synonymous with failure. And if it describes you right now--if that's the box you have to check for a while, while things get worked out--that's okay. 

The line--what not to say as someone with Lyme.

I've written quite a few posts about what not to say TO someone with Lyme. I haven't, however, ever touched on what not to say AS a person with Lyme. 

Because, sick or not, there's still a line. 

There's a line between being needy and knowing when you need to ask for help. There's a line between telling your story and putting it onto someone else's shoulders when they haven't asked. And there's a line between helpful and being annoying. 

So...

1. Don't introduce yourself and include the word Lyme. That isn't something you need to announce right off the bat. "Hi, I'm Leigh" is good. "Hi, I'm Leigh and I have Lyme" is not. 

2. Don't drop your story on someone before they ask. Wait until they ask. Not everyone cares. And even if they do care, not everyone knows how to react. It's easier for everyone involved, including yourself, if you wait until you're asked--if you're asked. If they never ask, take it as a good thing. A break from talking about it, and from thinking about it, can do you a lot of good. 

3. Don't make it seem like everything is bad when it isn't. Just because you're sick doesn't mean you have to always be unhappy. Don't hold back your laughter when something is funny. Don't stop smiling. It doesn't make you any less sick, and it doesn't make your struggle any less real. It's okay not to be okay, but it's also okay to be okay. 

4. But, along the same lines, don't say you're okay if you aren't. Take a break. Say you can't go somewhere. Don't say you're okay just because you think you're supposed to. Or because you think that's what people want to hear. You matter. And your truth matters. 

5. Don't try to make it seem like you have it harder than anyone else. Even if you have been sicker longer than someone else, don't make a point of letting them know that. Even if you have had more surgeries or more procedures than them, it's not a competition. Even if you can't do the things you want to do, there is probably something holding them back in their lives too. You have it how you have it. They have it how they have it. It's not your job to compare. 

When it comes down to it, being sick doesn't give you an excuse. Sure, it makes things different for you. 

But it doesn't make you better, sicker, or worse off than everyone else. 

Because, sick or not, there's still a line. 

This body.

I was looking in the mirror today while I was brushing my teeth and I realized something--I love this body. 

I love the head that has caused me everyday, unrelenting, ridiculous pain for the past almost 5 years. That same head is the place my hair--my favorite part of me--grows. And that is nothing I take for granted. Especially after my medicine tried to take that hair from me.

I love the teeth that are yellow from years of antibiotics, and all of the other poison I've put past them. Those same teeth are there when I smile. And I like to smile, smiling's my favorite. (If you read that in your buddy the elf voice, good work.)

I love the chest that is marked with scars from its days working as an entryway for too many medicines, the chest that holds a heart that doesn't always like to work as smoothly as it's supposed to. That same chest holds the heart that allows me to love, to love a lot of things, and to love hard. 

I love the hands that swell up, and hurt, and can't always bend to hold the things I need them to hold. Those same hands allow me to write these words that you're reading. And that makes me happier, and gives me more purpose, than you know. 

I love the legs that don't always hold me up well, the legs that don't always like to participate in the activities that I need them to. Those same legs allow me to get to doctors appointments on my own, they allow me to go for a drive when I need to clear my head, and they allow me to go out and do things when the rest of my body agrees. They keep me moving forward, literally and figuratively. 

I love the brain that forget words, and places, and names, and makes me feel like I'm waking around in a marshmallow. That same brain got me through college, and gave me a reason--a reason to push through this part of my life to get to where I want to be. And that same brain remembers a life before this, a life that I want back. 

I love the eyes that sometimes forget they have a job, the eyes that cause me pain and make the world a little harder to navigate when they aren't working properly. Those same eyes brought me the doctor that cares and believes in me more than any other doctor ever has. Those same eyes allow me to see the beauty in the world around me even when there is no beauty inside of my fight. (Plus they gave me cute glasses!)

I love the mouth that sometimes jumbles my words, and holds a tongue that I'm starting to think is even allergic to itself. That same mouth speaks the words that tell the people around me that I love them, tells the doctors what they need to know to help me, and helps me spread the word about the ugly things this disease can do to you. 

It may not look the way I want it to. It definitely doesn't look the way the world wants it to. It usually doesn't work the way it's supposed to. It hurts. It always hurts. But it's holding itself together. Somehow. Piece by piece. 

And it's mine.

It was mine before it became this way; it was mine before it was taken over. And when this battle is over, it will still be mine. It's been here all along (give or take a little bit of it). And it's seen absolutely everything I've been through. It's beat up, it's scarred, and it's worn down. 

But it's mine. 

And that's pretty cool if you ask me. 

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.