Admiration.

First of all, let us address the elephant in the room (or I guess the elephant on the screen). It has been a long time since I blogged--yes. Do I have an excuse? Not particularly. To be completely honest, I just haven't felt like it. I haven't felt like explaining myself. I haven't felt like coming up with eloquent ways to talk about things that, in all reality, are ugly. I haven't felt like getting comments telling me how strong and great I am because I've felt far from strong or great. And, I haven't felt like reading what I wrote. Writing it out is one thing. Reading it back and realizing that it is my life, sometimes that's not my favorite activity. So yes, it's been a long time. Yes there are times I could have sucked it up and written. But I didn't. And now I am. Okay, moving on. 

About a week ago, I was at an eye appointment. I don't think I've ever mentioned it here before, but I have an incredible eye doctor. She's caring, she takes time to make sure I'm getting what I need--from both herself and the doctors she refers me to, she is helpful, she believes in lyme, and most importantly, she believes in me. So, anyway, I was at my appointment with her a week ago and she said "Leigh, we need to get you back. You worked hard to finish school while you were feeling awful, which is so admirable, and we just have to get you back on track." And she's right, I absolutely need to get back on track. But all I could focus on was the fact that she said my efforts to graduate while I was sick were admirable. 

Admirable. 

To me, you admire someone because that someone did something great. You admire your favorite artist's painting because it's beautiful and they put a lot of work into it. You admire your mom or dad because they're great people and they are who you want to grow up to be. You admire your favorite celebrity because they did something philanthropic and awesome. And all of those things make sense to me. Those are all things that these people choose to do, or be, or believe in. And, for the most part, the admiration is directed towards them because of what they, personally, did. 

But when I think about myself, I don't see anything worth admiring. Admiration seems too personal. Too much like it was all me and my hard work. Too much like I'm the one who should be looked up to. 

But, in reality, I didn't graduate college because of me. Sure I am the one that went to my classes, I am the one who got my grades, and I am the one whose name is on my diploma. But my efforts were far from personal--far from just my own. 

I graduated because I was surrounded during the hardest two years of my life by people who cared more about me than I knew what to do with. I was surrounded by people who loved me and put my needs before their own. I lived with the most beautiful human beings that didn't necessarily understand my exact situation, but tried their absolute hardest and did a pretty great job. They understood that when I couldn't get out of bed, they could always come to me instead. And they knew that when Rent was playing on my tv, it was a bad day, and they let that be okay. I had professors that sincerely cared about me, not only as a student but as a person. I had one professor who offered to drive me home one day when I was more sick than normal. And I had another professor who gave me more of her time than I ever could have asked for, just trying to understand my battle. I had friends that helped me when I missed class. I had friends that stood up for me when other people in our classes weren't so understanding and thought I was getting special treatment for no reason. I had friends from home that were constant reminders of who I used to be and what that old Leigh wanted. They were the reason I kept going even when things got tough. And I had friends that did their best to treat me as normally as possible even though it wasn't always easy. 

I didn't graduate because I worked hard. I mean sure, I did work hard. But I graduated because the people around me held me up when I couldn't. And to me, THAT is what's worth admiring. I am just one human being. And my ability to walk across that stage almost three years ago (wow I think that's the first time I realized I've almost been out of college for 3 years!) was far from my own doing. I am not admirable. The support I had, and continue to have, is admirable. And I never, for even half of a second, take that for granted.

So, if you fall into one of those categories that I have mentioned, thank you. From the bottom of my heart. It may not be the best functioning heart, but the part that pumps out love and sincere thankfulness for you is working 100%. And even if you weren't around during my college days, or you don't think I'm talking about you, I appreciate you too. This was an appreciation post to those people because it came up in conversation the other day and got me thinking. But every day that I can keep pushing forward is a living appreciation post. 

Thank you thank you. I admire you. 

Four.

Four years ago today I put the first pill into my body to fight back against my lyme. It was an antibiotic given to me by the first doctor who believed me. The first doctor who said "we will figure this out". And the first doctor who was taken from me, and so many others, just for giving us the help we needed. 

Four years ago today I felt hopeful. I thought I would take some medicine, listen and do what I was told, and get better. I knew it wasn't going to be an easy road, but I had no clue how long and bumpy it really was going to be. I had no clue that I would be faced with finding a new doctor, without any warning. I had no clue that I would finally get the positive test that I needed, but not for a few long years after I took that first pill. I had no clue that I would have to push harder than I knew possible to get through college while I was sicker than I ever had been. I had no clue that the port I had put in three days after I graduated college would not be my last one. And I had no clue that now, four years later, I would still be sick and again left looking for a new doctor without any warning. 

Four years ago today I thought I knew what it meant to be sick. I thought I had reached the sickest I could be, but only because it was the sickest I had ever been...yet. I thought I knew what it meant to be tired. And I thought I had seen the worst of what the lyme life had to offer.

But I had no clue. 

Now today, four years later, here I am. I have learned never to think that it can't possibly get worse, because my body is a pro at proving that it can. (And while I admire its determination and confidence in its abilities to make me sicker, I wish it didn't constantly feel the need to prove that to me.) I have learned to never assume that this round of treatment is the last, because I will only end up disappointed when it isn't. I have learned that doctors leave--some by choice, and some in ways completely out of their control--but, despite that, lyme doesn't leave. I have learned that tired isn't a feeling that I experience anymore, it's just a characteristic--just part of who I am. (Leigh: red-headed, freckled, determined, creative, tired.) And I have learned that adversity is something that comes with the territory, along with the heartbreak of being faced with it time and time again. 

But, I have also learned that I am strong. I have discovered strength within myself that I didn't even know was possible. I have pushed through, and continue to push through, things that feel absolutely impossible. And I have learned that there will always be some days that I go to bed thinking "How?! How did I make it through today?" I have learned that things that I thought were a big deal four years ago aren't even close to important today. And I have learned that other people aren't going to understand that. But I have also learned that, given the opportunity, people really do want to learn more about what I'm going through. I have learned that I can, in fact, swallow upwards of ten pills at one time, but only with really cold water or something with bubbles. (Pro tip: if you can't feel your throat, you won't feel the pills as they jockey for position on their way down.) And, most importantly, I have learned that I can do anything. I can get through anything. Lyme is tough, but I am WAY tougher. 

Four years ago today I was a different person. 

Am I worn down and exhausted? Absolutely. 

Are there times that I want to throw in the towel? More than I want to admit.

Am I still hesitant to believe that I'm going to get better? Of course.

But am I hopeless? Far from it. 

I heard a quote once that was along the lines of "as long as I'm breathing I can hope." And I couldn't have said it better myself. I will always have hope.

So, here's to four years of treatment.  And here's to hoping that this year is the last! 

A Lymie Guide to the Holidays

With the holidays getting closer, there are a lot of mixed feelings around. There are those of us who love Christmas--every single thing about it. There are those of us who like Christmas, but don't fully get into it. There are those of us who are sad at Christmas, for one reason or another. There are those of us who are sick at Christmas. And there are those of us everywhere in between. 

Notice I didn't put "those of us who are sick at Christmas" into the same category as "those of us who are sad at Christmas." The two can go hand in hand, absolutely. Without a doubt. But they don't have to. Just because you're sick doesn't mean you have to be unhappy. And even if you are unhappy, it doesn't have to take away the magic and excitement of Christmas. 

But, it's not always easy. It's not easy to hang onto the Christmas spirit when you struggle to get out of bed. It's not easy when Christmas hurts just like every other day. It's not easy to watch your healthy friends go to ugly sweater parties, New Years parties, etc. when you can't. It's not easy to watch people live out their holiday season the way you used to be able to--the way you wish you could. 

So, I thought a Lymie's Guide to the Holidays might be helpful. Not just for those of you who have Lyme, but also for those of you who are around someone with Lyme during the holidays. 

So, here you go: 5 steps to not only surviving, but enjoying, the holiday season with Lyme. 

1. Breathe. The holidays can be overwhelming. That's not necessarily a bad thing, but it's definitely a true thing. There are a lot of things to do, a lot of people to see, and a lot of things that you are going to feel. You may not be able to keep up. You may feel like you're being left in the dust of the excited chaos of the season. But if you can remember to stop and take a deep breath, you're going to be okay. 

2. Allow yourself to be selfish. The holidays are supposed to be a time of giving, so having me tell you to be selfish probably sounds a little weird. But, hear me out. Because, when it comes down to it, allowing yourself to be selfish is a form of giving--giving to yourself. When you're sick, you have to learn to say no. "No, I can't come out tonight." "No, I can't go to the mall with you." "No, I can't go for a walk." And it gets a little old. You want to say yes. But, in order to make it through the holidays, you have to say no. There are so many holiday events. There are so many things to do. But you can't do them all. And that is okay. Be selfish. Say no. Think about the things you really want to do--be it Christmas Day with your family, a dinner out with friends, or whatever is the most important to you, and shoot for those. Give yourself the opportunity to rest so you can get through. 

3. Be thankful. If you know anything about me, you know that I am overly thankful and appreciative. But, not everyone is. And that's okay. But, if you haven't taken the time lately to thank the people in your life, what better time to do so than the holidays? Tell the people you love that you love them. Thank them for the things they've done for you. Thank them for sticking around. And, in stopping to think about who and what you are thankful for, you will be reminded how lucky you are. Even on your toughest days. 

4. Forgive. Forgive yourself for not having the year that you planned on having. Forgive the people in your life who may have just not gotten it, or the people who have left you behind. And forgive your body. Forgive your bones for forgetting sometimes that their job is to hold you up. Forgive your muscles for getting lazy. Forgive your brain for taking a break and leaving you hanging without words. Forgive your heart for losing its sense of rhythm at times. Forgive the bacteria that has long overstayed it's welcome. Forgiving won't take the troubles away, but it's necessary. Holding a grudge does no one any good. Forgive and move forward. 

5. Be mindful. Being mindful means being aware of everything in the moment. Your emotions. The way your body feels. The way your heart feels. The happiness. And even the sadness. Take it all in. And run with it. (Don't really run. This is a Lymie's guide, remember? No actual running here.) This will help you appreciate every second that you possibly can. It may not be easy to get through the holidays when you are sick, but it's possible. And if you make the effort to be mindful, you can say without a doubt that you are doing the best you can. 

I hope these ideas helped. And if they didn't help, I hope they at least made you think. If you are reading this and you have Lyme, know that you aren't alone. If you are reading this and you love someone with Lyme, know that you aren't alone either. But also know that your person with Lyme needs you during the holidays more than most other times. 

Together, with these steps and everyone's combined efforts, we can enjoy the holidays. 

It may seem like it's out of reach. It may be hard to remember what a holiday without Lyme feels like. And it may feel impossible to get into the holidays when things have been so rough. 

But, remember, regardless of anything else...

"The bell still rings for those who truly believe." -The Polar Express

"It's okay. I'm used to it."

As I was sitting in the doctors office one day last week, with a tourniquet around both of my wrists, willing the veins in my hands to show themselves so the lady could take my blood, I said something that I haven't been able to stop thinking about since. The lady was tapping my hand to get the veins to come up, and she apologized for having to work so hard and poke me so many times to get my blood. And, without even thinking about it I said "oh it's okay! I'm used to it." 

My intention in saying it was to try and make the poor lady feel better. She was the second person to be called in to try and get my blood, and she was struggling--at no fault of her own, at total fault of my veins--and I felt bad for her. I always do. I find myself apologizing every single time I have blood drawn because it's never an easy task for anyone involved. But, what really bothered me was the truth in what I said to her. 

"I'm used to it."

So often I brush off something that is happening or something that I'm feeling with those words. 

"It's okay. I'm used to it."

But, it's not okay. It's not okay to be used to pain. It's not okay to be used to fear, especially when it's fear of your own body. 

It's not okay to be used to waking up anxious, waiting to open your eyes to see if your head still hurts. It's not okay to be used to feeling like your heart is going to pop out of your chest when you have palpitations that just won't quit. It's not okay to be used to the stabbing pains that go on a tour of your entire body every day, stopping at each joint along the way. ("And to your left we have the enlarged spleen in its natural habitat.") It's not okay to be used to feeling like the ground isn't under you when you stand up. It's not okay to be used to being afraid to go to sleep when you're feeling bad because you're afraid you won't wake up. It's not okay to be used to struggling to remember the name of something that you use every single day. It's not okay to be used to putting chemicals into your body. And it's not okay to be used to feeling like you're going to die without them. 

It's not okay for your friends to be used to you canceling plans on them time and time again. It's not okay for your family to be used to you having to go to the car during a shopping trip because the lights are making you sick in the store again. It's not okay for the people that mean the most to you to be used to you dropping off the face of the earth for a few days because you have to just sleep off the pain.  

It's not okay. 

And, I will continue to tell the blood draw lady that it's okay. I will continue to shrug my shoulders when I wake up with a headache still because, 4 years later, I am used to it. I will continue to tell you that I'm okay with missing out on yet another family function or another day with friends, because it happens all the time. 

But, it's not okay.

Being used to being sick is not fair. And it will never be okay. 

Do's and Don't's of being a person with Lyme.

I have found myself getting really frustrated and confused lately by some things I have been told/have seen/have experienced in the lyme world. So I think it's time for a recap of things that being sick allows you to do vs. things being sick doesn't give you the excuse to do. 

Things being sick allows you to do:

1. Tell your friends, your family, and any other people in your life that you love, that you love them. Often. And sincerely.

2. Appreciate the little things. As cheesy as that sounds. 

3. Take the time to do what your body needs you to do--whether that's sleep all day, sit outside for some air even when it's 35 degrees out, or take 3 baths in one day. 

4. Relate to House episodes more than you ever thought you would. And be annoyed when they say something that's not right. Or when they give a medicine for something you've had that same medicine for and you haven't gotten better but they do. (And then get even more annoyed when you realize you're annoyed over a fictional character's health.) 

5. Really figure out who are you, what you want to do when you're better, and what really is important in your life. 

Things being sick does not give you the excuse to do: 

1. Beg for attention, ask for money all the time, believe that you deserve things handed to you. 

2. Give up on your friends. If your friends are willing to come to you, or do things that you are able to do with them, grab onto that and never let go. Not everyone is lucky enough to have the friends that stick around, so if you do, cherish it. If they're not giving up on you, don't give up on them. Yes they can't fully understand, but if they're still around they're willing to try. And that's worth it's weight in gold. (Or prescription costs. Worth it's weight in prescription costs.)

3. Be angry all the time. Sure, being sick is ridiculously frustrating. And I would be the biggest liar ever if I sat here and said I never got angry. I get angry for lots of reasons related to my health. But I also am really happy. I'm a really happy person 97.6% of the time. And that's okay. Just because I'm sick doesn't mean I always need to be a grump. And it doesn't make me any less sick just because I don't always dwell on how bad it is. The world isn't out to get you. You're out to get the world. And it's always worth the extra effort it takes to kick that anger and be happy. 

4. Think that you're so much worse off than everyone else. Because, maybe you're right. Maybe you are a lot sicker than a lot of people. But it's not a competition. I don't think any differently about you because you're less sick than me. And I wouldn't think any differently of you if you were more sick than me. I am me and you are you. It's not a competition. It doesn't do anyone any good to compete. 

5. Bring your health into ever single conversation ever. "The weather is beautiful today!" "No, it's 67 degrees. And one time when it was 67 degrees out I had this really bad headache and ended up in the ER because it was so bad because I'm really sick and I am on a lot of medicines because I'm really sick because I have lyme and I'm probably sicker than you and anyone you know and I win. I don't know why you like this weather." (Dialogue based off of actual events.) why? ...why? 

And, of course we all slip up. It's easy to get stuck in a lyme funk and not even care. But I just needed to throw it out there as a reminder. 

Positivity.

The way I look at it, every morning when you wake up you have two choices. You can choose to be positive, or you can choose to be negative. Okay, so you can also choose which cereal you want to eat, or if you'd rather have a cookie. So, I guess you really have more than two choices. But for the sake of this post, we're going with just two: being negative or being positive. 

It's easy some days to automatically choose negativity. If the day before ended badly, why not just assume you're going to have another bad day, right? I get that. I think everyone feels that way some days. But, no matter how the day before ended, it ended. It's over. And you have the incredible opportunity in front of you every single day to be positive. No matter what. 

Lately I have seen more negativity than I know what to do with. On Facebook. On the news. On Twitter. In real life. It's constant. It's overwhelming. And it doesn't make sense to me. Of course there are reasons to be negative. There are reasons to be in a bad mood. There are reasons to hate everyone and everything. I'm not sitting here telling you never to feel that way, ever. If I did that, I would be the biggest hypocrite in the world and I would suggest you never read what I had to say ever again. 

But, what it comes down to is really your choice. Are you going to let something that upset you today continue to brew and fester (ew) and take over your world? Or are you going to stop it dead it its tracks? Are you going to wallow in it? Or are you going to cry it out, eat some cake, and move on? It's your choice. And no one can take that from you. But, you owe it to yourself to make the decision that is going to make your life better. (Note: that choice is positivity.) 

Now you're probably wondering why I'm sitting here telling you what to do when I don't even know your story. And, you're right. I don't know your story. But that doesn't matter. You know your story. And the power to choose negativity or positivity is in your hands. Not mine. After you finish reading this, I'm out. I have no more control over anything regarding your life or your story. Your story is your story, just like my story is my story. And there's something uniquely beautiful about that. But what's even more beautiful is positivity. Add those things together and you have a recipe for success--a recipe for happiness.

So now I'm handing you the mixer, and leaving you with the choice. If you are reading this thinking that I'm absolutely crazy and that there is no way to always be positive, you are half right. (The half about not always being positive, in case you weren't sure.) And if you are reading this thinking that sometimes it's hard to be positive, you are absolutely right. It is a challenge. An ongoing challenge. But, if you're reading this thinking about taking on that challenge, even just for one day (because after one day you will realize that it really is worth it), my work here is done. 

So, tomorrow morning, it's all you. And if you can't do it tomorrow, try the next day. That is okay. It's not easy. That's why it's called a challenge. But, I'm in this challenge with you. And I know you can do it. 

Fear.

I have written a few posts lately and then deleted them because I didn't think they sounded right--too whiney, too much like I was begging for attention, too jumbled--just not right in one way or another. But I'm going to try again. And if you are reading this, then I succeeded. Yay me!

Sometimes Lyme is really scary. I try not to focus on that aspect of things. But, it makes its way in there every now and then. And fear is a big emotion. A big, heavy, rude, nasty emotion. And, no matter how hard you try to push it away, it pushes back just as hard, sometimes even a little harder. 

(If emotions were a thing you had to bring home to meet your parents, fear would not be the one to bring.)

And, sometimes, fear can be productive. It can motivate you to get things done, or to make a choice. But most of the time, it sucks. And, right now in my life, it's not productive at all. It's heavy. It's confusing. And, sometimes, it's damn near paralyzing. 

Right now, as I'm writing this, there are tears dripping down my cheeks. And I don't know why. I have no explanation as to why I'm crying, or why I've been randomly crying off and on all day. I'm not sad. I'm not angry. I'm not any kind of anything that should make me cry. But, out of the blue, all day, I've been crying. 

Now, for most people that wouldn't be scary. It's just an emotional day. But, for me, it's scary. It's scary because, for the last few days, I have been able to feel the Lyme moving through my body. I can feel it looking for its next victim, its next place to hide. And today, I can feel it in my brain. (Yeah, my brain. It's as creepy as it sounds. It feels like my brain is shaking. And it feels like there is something fuzzy in my head, making everything a little harder to understand, a little harder to say, and a little harder to make into thoughts. It feels like I'm living in a marshmallow with the occasional shaking of a snow globe.) And, it scares the hell out of me to think that the reason I'm crying is because the bacteria is exploring my brain, and leaving its mark on the part of my brain that controls my emotions. It's scary to think about where it's going to make itself at home next. I find myself feeling something and immediately worrying that it's going to be like that for the next four weeks until things move around again. 

I want it to stop. I want to feel in control of my emotions again. I want to feel in control of my brain again. I want to feel in control of my body again, in general.

And, I may be tough. I may be strong 99% of the time. But sometimes, no matter how hard I try to convince myself otherwise, Lyme is really scary.