Right now.

(First of all, before we actually get into this post, I just wanted to say hi! I feel like I always just jump right into writing without acknowledging the fact that you're on the other end of the internet reading. So, hi there. Thank you for reading!) 

Focusing on right now is hard when you're sick. You always want to compare now to then. Today to yesterday, or today to tomorrow. It's so incredibly easy to get frustrated when you can't do today the same things you could do a week ago. And it's so easy to fall into a rut thinking about what you're missing and what you might not be able to do ten years down the road because of everything your disease is taking from you right now. And yes, those things matter. It's important to look back on the past, and it's important to look forward to the future...but not for the reasons that we do it. 

Let's take my right now for example. I could think back to a couple days ago when I was five hours away from home having an awesome adventure at a safari park with my best friend, and I could 1. be sad that I'm feeling so much worse today than I was that day, and wish I could have that day back....or, 2. be thankful that I had that good day, and be excited for more days like that in the future. (If you're lost, the one I should be doing is number 2.) It's so easy to find yourself feeling bad about the days you're having based on the days you've had...but, what's important is to get yourself into the mindset that you're having a day at all. And you will have more days, if all goes as planned. 

Before I started writing this post, I was sitting here feeling sorry for myself. Not because my life is bad, or because I have it worse than anyone else...but because I had a good day and now it's gone. But that's ridiculous. I'm totally missing the point. I had a good day. Yes I came home in a ridiculous amount of pain. Yes I slept half of the next day away. But I did it. I went five hours away from home (stay tuned for a future post about sick-girl-anxiety), I had an awesome time, and I recharged a little bit with my best friend by my side. I did it. And that's nothing to take for granted. 

The future is a tricky thing too. As you probably know from reading my blog in the past (if this is your first time reading, nice to meet you...now go read the rest of my posts!) I don't work. I'm twenty four years old and I have no job because I'm sick. My friends are getting awesome jobs, moving up in their companies, getting bonuses...and I'm reading books about how to sell things on Etsy so I can work around doctors appointments and bad Lyme days. It's hard not to sit here and think about my friends getting engaged, getting married, having kids, buying houses, and steadily moving forward with their lives. I look at my calendar everyday and almost everything is medical related. Doctors appointments. Pre-op appointments. Surgery dates. Days I need to give myself a shot. And when all you see is that, it's hard to convince yourself that the future is going to be any different. But what's important is to remind myself that it's not my future...it's my right now. 

You know what else is hard? Other people. They see that you're 24 and not working. They see that you don't seem to be moving forward with your life at the same rate as most people. They see that your life is different. But, unless they take the time to look further into it, they don't see why. They don't see your right now; they don't see your today. And it's hard to put your blinders up so you can't see outside of your right now, while at the same time wanting people to be able to see into your right now. I haven't quite mastered it yet. But when I do, I'll let you know the trick. 

But, for now, it's important to know that your right now is okay. It might seem scary (and by might I mean normally does, and by scary I mean absolutely terrifying) but, it really is okay. 

Try not to look too far back, or too far forward. But, if you find yourself doing it anyway, try and focus on the good things. The things that brought you to this point, and the things that you're looking forward to. Comparing right now to the past in terms of what you could do then that you can't now isn't healthy. Dreading the future because it's turning out differently than you expected is counterproductive. 

So, I leave you today with one of my favorite Dr. Seuss quotes..."today you are you, that is truer than true--there's no one alive who is you-er than you." Because, sometimes all you can say when you look at your day (just talking about Dr. Seuss made me a poet) is that you made it through. You did it. You survived. And that's okay. Right now is okay.

Believe in yourself. Believe in your right now. That's what matters. 

5 tips for surviving summer with Lyme.

1. Gatorade. Don't listen to anyone who tells you Gatorade is only for athletes. The point of Gatorade, and other sports drinks like it, is to replenish the electrolytes that your body loses. And, when you have Lyme your body doesn't function like the "normal" human body does. So, the electrolytes that would normally be just fine in a healthy body aren't fine in ours. (I honestly think my electrolytes get a kick out of randomly jumping out of my body and leaving me feeling like a grape on it's way to becoming a raisin.) 

Have a headache? Drink some Gatorade. Going for a walk to the mailbox (which is pretty much the equivalent of a trek up Mount Everest)? Drink some Gatorade. Having heart symptoms? Drink some Gatorade. When you are feeling something, your body is telling you something. And a good way to start listening to it without having to automatically jump to taking medication is to try to replenish your electrolytes first.  

2. Let yourself rest. There is nothing wrong with a nap (or three) in the middle of the day. If you get up in the morning and take ten steps to the bathroom and feel like you can't go any further, fine! Go back to your bed. Or make your way to the couch and flop back down there. And try again later. If you do what your body needs today, you will have plenty of tomorrows to go out and live your life. 

3. Sea-bands. I don't know about you, but I get nauseous. I get nauseous a lot. For logical reasons like riding in the back of a car. And for not at all logical reasons like reaching for something across the table or simply opening my eyes in the morning. (Like, what?!) And, sometimes--a lot of times--you just have to push through it. I've found that the most helpful product in making it through my moments of ridiculous nausea is my sea-bands. All they are are pressure point bands that you wear on your wrists. They have a plastic ball on them that pushes on the pressure point in your wrist that is supposed to help relieve nausea. And they actually work! They're ugly. And they make your wrists sweat. (They look like eighties aerobic class sweat bands.) But they work. I'll take it. 

4. Showers/baths. Now, don't get me wrong...I suggest everyone, whether you have Lyme or not, takes a shower/bath. And I suggest it all year round, not just in the summer. But, when you have Lyme, and you have to go outside (which is unavoidable sometimes) there is nothing like a shower/bath with cool water to help your body remember that it is supposed to be functioning. Don't use hot water, that will only make you feel worse. When you have a Lyme-y body, hot water sets off the detoxing process and leaves you feeling worse instead of better. Stick to cool water in the summer months. Putting cool water on your skin is similar to drinking Gatorade--it gives you a little bit of life back. 

5. Forgiveness. This is the most important one. As a Lymie, summer is going to be difficult. That's all there is to it. Breathing is harder. The clothes that you have to wear if you're going to be outside are generally tighter against your skin than the hoodies and sweatpants we can get away with in winter. Waistbands of shorts hurt. Bathing suit seams hurt. And even simple things like sweating can set off weird reactions in our bodies. And lord help us if we're on antibiotics. Say goodbye to even the tiniest bit of sun. Summer is a struggle. And you have to forgive yourself, and forgive your body, or it's going to be even harder. Can't go to the beach with friends? Go to something at night, or something indoors. Can't do that either? That's OKAY. Forgive yourself. Even if your friends don't, you have to. Summer is hard, but cooler days are right around the corner. That's the awesome thing about summer, it doesn't last long. (Unless you live somewhere that doesn't have cool seasons...in which case I'm sorry. Maybe you should buy a lot of ice packs.) 

Take it one day at a time. All year round, but especially in summer. If you can make it through the hottest, most uncomfortable days with Lyme, you can do anything. And, when all else fails, listen to your body. You know you better than anyone else does, no matter what anyone else thinks. If you listen to your body, and do what it needs you to do, it will repay you with moments of relief and less pain. And those moments will, hopefully, get longer and longer, and show up more and more often. 

Take on summer now (gently, slowly, cooly, and carefully) and you're one step closer to fully taking on life again. 

Lyme-cation?

It's been a while since I wrote here, and I was going to title this post "Lyme-cation," meaning that I had been taking a break from writing about my Lyme. But, the more I thought about it, the more I realized that's a very misleading title. Because, I can't take a Lyme-cation. No matter how hard I try, or how much I work at it, I can not get away from my Lyme. Ever.

And, there are no fancy words, eloquently written phrases, or jokes that I could write right now that would describe that feeling better than these two words: it sucks. 

I think I've tried just about everything to get a break from my Lyme. 

--I've gone on vacation. But it's hard to forget about your Lyme when you open your luggage and find the bag of medicine that you've packed that rivals in size your bag of actual clothes for the weekend. And it's hard to push it to the back of your mind when you're trying to go shopping, or explore a new place, only to have to go back to the car because you're overwhelmed by lights or smells. And it's hard for the person/people you're with to have a good time when you're constantly leaving them (sorry, Mom!). So sure, vacation sounds like a good idea, but it's actually a lot harder than it seems. 

--I've gone to a friend's house. But, again, any length of time away from home requires medicine. And, if I don't stay overnight, I don't have to pack medicine...but I have to leave eventually to go home to take medicine. There's never the option of a spontaneous overnight anywhere without planning ahead of time to make sure you have your meds on hand (totally defeating the purpose of your spontaneity). 

--I've gone out and done the things a "normal" twenty three year old girl does. But, it's not worth it. It's not worth the pain that comes the next morning and sticks around for the next few days. Alcohol does bad things to a lymie body. Dancing does bad things to a lymie body. I have pretty much discovered the hard way that Lyme doesn't like to have fun. Biggest buzz kill award goes to...Lyme!

--I've woken up in the morning determined to go on with my day without thinking about Lyme from that point forward. And then I go to get out of bed and put my feet on the floor. And the pain that comes along with that seemingly simple task blows that whole attempt for me. Good morning, you have Lyme! 

And, it's not even just the days that you make a conscious effort to forget about it. Lyme has a way of finding its way into just about everything, whether you are trying to avoid it or not.

--Going to a new doctor, for something not Lyme related (i.e. a new dentist)? Have to tell them you have Lyme. (Because how else do you explain the absurd number of medications listed on your new patient paperwork?) And in telling them you have Lyme, you have to brace yourself for their response. Are they going to believe in Lyme? Are they going to tell you that you're crazy? Or are they going to be understanding? The anxiety that comes along with mentioning the L-word to someone new is indescribable.

--Want to go out to eat? That's fine. But, are they going to have anything you can eat? Or are you going to have to eat something that you shouldn't just so you're not eating literally just a single piece of lettuce? Is it worth it? Sometimes, yes. But sometimes it's not worth the struggle. And sometimes, if you're like me, you will eat something that you think is totally fine, only to end up with a swollen tongue and hives. That's a fun game. Not. 

--Want to go outside on a nice day? I'm not even talking exerting yourself (because god knows that's a whole 'nother topic) or doing anything crazy...I'm talking about literally walking from your couch inside to a chair outside. Like, standing up, walking, opening the door, walking, sitting. NOPE, sorry! That's crazy talk. Your heart starts to flutter, you get dizzy, everything starts to look a little weird. Better go back inside. We'll try again in November.

I could go on, but for your sake as well as mine, I will end the list here. 

The crazy thing about Lyme bacteria is that it is spiral-shaped. It burrows into every part of your body, and you never know where it's going to strike next. 

The crazy thing about living with Lyme is that the battle is you-shaped. It burrows into every part of your life, when you least expect it, and you never know when it's going to strike next.

And, there are no fancy words, eloquently written phrases, or jokes that I could write right now that would describe that feeling better than these two words: it sucks. 

Okay.

Sometimes I have a hard time letting myself believe that the way I'm feeling is okay. Not just about Lyme, either. Just about life in general. And, since it happens to me, I have a feeling it happens to some of you, too. So, let this post serve as a reminder--if you're having a bad day, if you're having a good day, and even if you don't know what kind of day you're having--everything is okay.

Being sad is okay. Being happy is okay. Being lazy sometimes is okay. Not being able to get out of bed is okay--tomorrow is another day. Laughing is okay. Crying is okay. Being afraid is okay. Eating that chocolate bar is okay. Watching entire seasons on Netflix in one sitting is okay. Having big dreams is okay. Being content is okay. Wanting more is okay--that's what pushes us. Liking what you see in the mirror is okay. Not liking what you see in the mirror is okay--we all have those days. Spending time with friends is okay. Not wanting to spend time with friends is okay. Being passionate about lots of things is okay. Having an opinion is okay. Saying "I love you" a lot is okay. Being sick is okay. Being healthy is okay. Being tall is okay. Being short is okay. Feeling well is okay. Not feeling well is okay. 

Being you is okay. 

Everything is okay. 

A Review of The Fault in Our Stars.

So, you probably expected a post like this. Or maybe you didn't. Does anyone even read this anymore? Are you even reading this now??

Anyway, if you know anything about me (or even if you don't know anything about me other than what you've read on my blog) you know that I think a little deeper into things than the average person...and probably a little deeper into most things than I should. So, when I went to see The Fault in Our Stars this weekend (which was INCREDIBLE, by the way. Seriously, read the book and then go see it!), my brain kicked into high gear and I haven't been able to slow it down since. And, what else would I do with an overflowing brain than let it pour out through my fingers?! 

So, here you go...a sick girl review of The Fault in Our Stars.

First of all, I was originally afraid to read the book. I didn't want to be that stereotypical sick girl reading a book about a sick girl. But, clearly, I got over it. And I read the book. Three times. Once because I just wanted to read it, a second time because I wanted to decided exactly how I felt about it, and a third time because I needed to read it. Needed. There was something about it that was incessantly calling my name until I picked the book up again. And, the third time is when it all really came together for me. 

"I fell in love the way you fall asleep: slowly, and then all at once."

Okay, so that was cheesy. But, for real, I am not one to get really into a book. I read sometimes, and I generally like what I'm reading, but this one hit me a little differently. I fell in love not with the characters necessarily, not even with the love story that everyone is so obsessed with, but with the way it made my heart feel--like everything I feel on the daily is legitimate, allowed, and okay. 

I guess I should back up and explain for a second in case you haven't read the book. I don't want to give too much away in case you do want to read it (which you should), but I'll give you the general idea. It's a story about a girl with cancer, who falls in love with a boy who also has cancer. He is in remission, she isn't. They genuinely live life while they're together, they go on some adventures, and of them ends up dying at the end of the story (but I'm not going to tell you who, because you should read it!). 

So now, after that incredible synopsis of the story, you are probably wondering how it made me feel so validated. And, honestly, I don't have a cut and dry answer for you. But, I can tell you that the tears that were pouring down my face as I watched the movie were probably not the same kind of tears that everyone else in the theatre was crying. I think it's pretty normal to be reduced to a puddle after watching the movie. But, I wasn't crying because someone died. I wasn't crying because they were sick. I was crying because it was so real. 

I don't have cancer, but I do live with something very similar--something that sometimes makes going on throughout the day feel next to impossible. I am not on oxygen, but I do have moments/days where breathing seems like the absolute hardest thing on the planet. And, I am not being kept alive by an experimental drug, but I am being kept alive by the nearly twenty pills I take twice, some three times, a day. The story is not my story. It's not anyone's exact story. But, the feelings are real. The good ones and the bad ones. That's another thing that was incredible about this movie; when I wasn't crying, I was laughing. So many times I found myself chuckling because they hit things so spot on, and the jokes they made were perfect. And, when I left, my heart felt full. Full because they made a movie out of something that is the reality of so many people's lives. Full because I was feeling so incredibly grateful for the people in my life--the people who came to my mind along with each character in the movie. Full because every person that watches that movie and chooses to look beyond just the love story will see the reality of life for someone who isn't healthy. Full because that movie was the truth. 

Being sick wasn't glamorized. Being sick wasn't made out to be anything that it isn't. Their struggles were realistic. Their happiness was realistic--the fact that not every second of the life of a sick person is miserable was made pretty clear, and that in itself is awesome. And, their sadness was realistic. Their fears were realistic. The ups and downs were all there. 

If I could buy movie tickets/the DVD/the book for every single of one you who who is reading this (again, I'm under the assumption that someone is actually still reading this) I would. If you want to do one thing for someone in your life who is living with any kind of chronic illness, or even for someone in your life who is the caretaker of someone living with a chronic illness, you need to see the movie. If you need a pick me up, or a realization of what really matters, you need to see the movie. And, if you have an overabundance of tissues in your house and you need to get rid of an entire box in a short period of time, you need to see the movie. 

Thirty one.

Well folks, we made it. Together, we made it through 31 days on this Lyme awareness journey. Can you believe you've been reading all the crazy things that have spilled out of my brain and out through my fingers for 31 whole days?! (I'm not sure whether to apologize for your misfortune or say thank you for sticking it out with me!)

Let's recap what we've learned this month, shall we? 

1. Lyme is serious. 

2. Awareness matters. 

3. Your person with Lyme needs you, whether you know what to say or not; just be there. 

4. It's important to think before you speak. Words hurt more than you can imagine, but they can also help more than you know. 

5. Your person with Lyme is trying their hardest. 

6. Yes, someday I will get a job. 

7. Nothing about Lyme is fake. It's a real disease. It's a real struggle. It's all very there and very real. 

8. Yes, I really need to take all this medicine. 

9. Your person with Lyme wants you to ask questions. Don't make assumptions. Don't just wonder. Ask, we will answer. 

10. The littlest things mean the most. 

11. Check yourself for ticks. For real. Do it.  

12. Oh, and did I mention...Lyme is serious and awareness matters?

So, now we have made it to the part where I tell you thank you twelve more times. Thank you for sticking it out with me--not just this month, but through this whole journey so far. Thank you for telling me that you're reading what I have to say--it means the world to me that my words are reaching you. Thank you for taking the time to become aware. Thank you for doing it for me, and thank you even more for doing it for yourself. 

This isn't the end of my blog's life, of course. But it is the end of this month specifically set aside for awareness. I hope you have learned something. I hope you can walk away knowing something that you didn't know when you sat down, fastened your seatbelt, and decided to go on this journey with me. 

Let's not look at this as the end of something. Let's look at it as a beginning. I hope it's not just the end of Lyme awareness month. I hope it's the beginning of a lifetime of awareness. I hope it's the beginning of you taking the extra couple minutes to help ensure that Lyme doesn't happen to you. And I hope it's the beginning of your efforts to look at things a little differently. 

Perspective matters. Awareness matters. 

You may now unfasten your seatbelts. Thank you, from the bottom of my heart, for taking a closer look into the Lyme life with me. 

"Okay" guilt.

You know the term "survivors guilt"--the guilt that someone feels when they survive something that takes someone else's life? Well, as someone with a chronic illness I have "okay guilt." Similar idea, but obviously not as severe as survivors guilt. But frustrating and upsetting, nonetheless. 

I don't always feel it. Some days I want to scream it from the rooftops that I am feeling okay. But other days, I'm almost afraid to say it. 

The hardest part for me is when a friend--specifically a Lyme friend--tells me that they are having a bad day. If I'm having a good day, I don't want to rub it in their face that my day is better than theirs. But, at the same time, I want them to tell me about their day, always. No matter if it's good or bad. (So really, I'm a huge hypocrite.) It's a constant struggle between telling them about my good day so that they are reminded that good days can happen even when they are having a bad one, or just keeping my mouth shut and listening about their bad day. I would obviously never tell them I'm having a bad day when I'm not, but I've become a pro at keeping the subject on them so my day doesn't even have to be addressed. The fear of making them feel even worse is constantly there. 

I also struggle with saying that I'm having a good day because I don't want to settle on the idea that how I'm feeling is as good as it's going to get. I'm afraid that if I say I'm having a good day, or that I'm doing okay, when I'm not feeling 100%, that I'm settling with how things are. You know how at the hospital, they ask you how bad the pain is on a scale of 1-10, and you're afraid to say 10 because you don't know if this is actually the worst pain you're ever going to have and you want to save that 10, just in case? I feel the same way about saying I'm okay. If my day is only a 6/10, that is okay in terms of it being better than a 2/10...but I don't want a 6 to be good. I want a 10/10 day. So, saying that a 6/10 day is okay seems like settling. 

So, basically, I'm "okay" impaired. That's what you can take away from this post. But, it doesn't mean that I don't appreciate my okay days...I just am not ready to scream them from the rooftops yet. 

But, if you do hear "I'M OKAYYYYY!" randomly floating through the air anytime soon, you'll know I've figured it all out.