Lyme month day 6–Nurses

Today is National Nurses Day! 

Having been sick for so many years at this point, I have encountered a LOT of nurses. In doctors offices, in hospitals, during procedures, during surgeries. So many nurses. 

I have met my share of nurses who didn’t understand what I was dealing with. 

I have met my share of nurses who I want to give the benefit of the doubt by saying they were just having a bad day. 

But I have met SO MANY more amazing nurses. And this post is a thank you—even though they’ll never read it—to just a few of them that I have never forgotten. 

Thank you to the nurse who stood by my side and wiped every tear off my face during that spinal tap. Thank you for telling me I was brave up until the moment I passed out. And thank you for being the one holding my hands when I came back. I’ll never forget you tearing up with me and telling me that what I was going through wasn’t my fault. Thank you for being there that day. 

Thank you to the nurse who sat with me when I was feeling more than I was supposed to during my port surgery. I can’t explain the feeling of fear but I will always remember the feeling of relief you brought me. Thank you for being there in those moments when I needed someone the most. 

Thank you to the nurse who made me laugh in some tense moments before a procedure by strapping my boobs down to the table with medical tape when the original plan didn’t work. I think about that sometimes and it still makes me laugh. Thanks for being the levity I needed. 

Thank you to my home port nurse. The only person who I would willingly allow to stick a needle in my check every week for two and half years at 7am. Thank you for teaching me how to accept what I was dealing with during those few years. Thank you for teaching me how to take care of myself not only physically but emotionally sometimes, too. Thank you for being a calming voice when I needed one—like when I woke up to blood all over my chest or my port stopped working for the bajillionth time. Thank you for supporting not only me but my mom, too. Thank you for becoming a friend. I am eternally grateful and owe so much to you. The thought of IV treatment again with someone else as my nurse just wont be the same. 

Thank you to the nurse who took my stitches out after surgery and let me take as long as I needed before I looked at my new scar for the first time. You may never know how much I needed and appreciated that. 

Thank you to the nurse in my old Lyme doctor’s office who fought for me when no one else did. Thank you for going above and beyond. No matter what it took. Thank you for paying so much attention to me and what I needed even though everyone else in that office needed help, too. You were such an integral part of my diagnosis and I wish I got to say thank you. 

And really, thanks to the nurse who snuck me an extra pack of graham crackers after eyelid surgery and told me not to tell. That was pretty cool of you, too. :)

There are so many other amazing nurses I have come across, but those were just a few that have never left my mind. 

If you are a nurse and you’re reading this—thank you, too. Thank you for what you do every day. Thank you for your hard work. As someone who does come across so many nurses, in so many different situations, I know your job is not always easy and is not always appreciated. Please know that as someone on this side of the equation, I am just one voice but I appreciate you. There have been so many times that a nurse has been exactly what I have needed exactly when I needed them. And that is something I will never take for granted. 

Thank you. 

Lyme month day 5–Awareness Months

Let’s take a break from talking just about me and talk about awareness months for a minute. 

Stop what you’re doing and hear me out, will you?

I know you’re tired of scrolling through the graphics of “crazy symptoms you shouldn’t ignore” while you’re just trying to get to the crazy cat videos on your Facebook newsfeed. But, when your friend feels validated and brave enough to share those graphics during the awareness month dedicated to her illness, maybe those cat videos can wait?

I know you’re tired of seeing your other friend change her profile picture twelve times this month. But maybe you could look past it if you realized she was just trying to make sure the awareness ribbon on the frame filter didn’t cover her mom’s face on the best picture she has to remember her by? 

I know you’re tired of that girl from high school who’s posting all the time this month about the symptoms she missed. Maybe you’ll thank her one day when you remember her post and get to the doctor fast enough? 

I know you’re tired of the videos that seem a “little too dramatic” about the boy whose life was turned upside down by an illness that he never saw coming. Maybe you won’t just scroll by it when it’s someone you love? Maybe you’ll even share it? 

I know it’s easy to forget the importance of awareness months if you aren’t directly affected. I know you think there are too many. I know you think “I can’t care about everything.” 

I’ve heard it all. 

I also thought I didn’t need to care about anything. Until I did. 

Lyme month day 4–This Was Not Part of the Plan

I am struggling to write this post today. I have started and deleted it probably five times. I have the beginnings of three different posts saved in my notes but none of them seem right. I can’t get my thoughts together. I have so many things I want to share with you this month—I have a whole list—but none of them are happening today. 

My intentions were not to start this month out so negatively. 

This was not part of the plan. 

But I guess in promising you the reality of lyme—in promising you to own my story despite my fear this month—this is really what I should be giving you anyway. 

I should be telling you that I went shopping with my mom today and couldn’t make it through the store. I should be telling you that I had to tell my mom—the absolute best, most supportive, person in my entire life—that I needed her to stop talking in the car today because the sound of her voice was physically hurting my brain (no, not my head, my brain) and making it feel like there were ice picks being stabbed into my neck. I should be telling you that I’m in tears writing that because I know how crazy and unbelievable it sounds and I hate that it’s real. I should be telling you how equally sad it makes me that my mom understood because this is her reality, too. I should be telling you that my brain has never felt more physically unstable in my head than it has over the last few days. I should be telling you that that makes me feel just as emotionally and mentally unsettled as you’d think a wobbly brain would. I should be telling you that I have doctors appointments coming up this week that I already feel the anxiety creeping in for. I should be telling you that my hands are twice their normal size tonight. I should be telling you that I can’t feel my left foot. I should be telling you that I am struggling. 

I should be telling you that I am going to be okay. 

But this was not part of the plan. 

Lyme month day 3–My Face

I had blog post planned for today. But I had a moment earlier today that derailed that plan and lead me here instead. 

Today I looked in the mirror and the face looking back at me was not mine. 

I have written here before about my struggles with my body throughout my Lyme journey, but I’ve never really talked specifically about my face.

People tell me all the time that I look the exact same as I did when I was a little girl. And they’re right. In the big picture, I am the same red headed, curly haired, freckle faced girl that I was when I was five. Just taller and with glasses and a gap in my teeth. (Sorry Mom, I know you paid a lot of money for those braces and I was supposed to keep wearing my retainer...)

But my face tells the story. Some days it’s a story of resilience. Some days it’s a story of hope that I find somewhere deep down inside. But today when I looked in the mirror it was a story that broke my heart. 

Today when I looked in the mirror my face was not mine. 

Some days I am significantly more swollen than others. Some days my face is very round from that swelling, some days it isn’t. Some days I’m okay with that, some days I’m not. Some days my eyes are more sunken into my face, some days they aren’t. Some days I have dark circles, some days I don’t. Some days I am very pale, some days I’m not. Some days my left pupil is huge, some days it’s normal. Some days the left side of my face is a just a little droopy, some days it’s not. Some days I think that wonky face is kind of quirky and cute, some days it makes me irreparably sad. Some days I look in the mirror and smile at myself, knowing I’m going to be okay. Some days I immediately look away, not so sure. Some days I know that I’m winning this battle, some days I feel like I’m the carnage in the war being fought inside my body. 

Today I was the carnage. Today I did not smile. 

Today my face was not mine. 

Lyme month day 2–Let’s be Honest

I’m going to start this month off by being real honest with you. 

I was—and maybe still am—very hesitant to pick my blog back up for Lyme month this year. 

It’s easy to feel like I have have told my story already. It’s easy to feel like I have overstayed my welcome in the sharing space. It’s easy to feel like I’m at the point of just being annoying. And it’s hard to teeter on the line of putting helpful information out there by sharing my experiences vs seeming like I’m complaining. 

But the truth of the matter is...my story is not over. I am living it every day. And I still have a lot of things to say. And I’d be doing myself, and anyone who cares at all about what I have to say, an injustice if I stopped saying those things. My fear—because that’s ultimately what it is—should not stop me from saying what is on my mind, and on my heart. 

What if that fear stops me from saying something that makes someone realize that maybe they need to get their symptoms checked out?

What if that fear stops me from saying what someone else needs to hear to help them through the hardest part of their journey? 

What if that fear stops me from saying what someone needs to hear to help them help the person in their life that needs them the most? 

What if that fear stops me from saying the thing that clicks and makes the difference even for me? 

I can’t take that chance. 

The fear is mine. But the story is mine too. And as hesitant as I was—as I am—I have decided to own the fear and, more so, to own my story. 

No matter what you’re going through in your life, I hope you can do the same. I hope that you can realize that the space you take up—both in the world and in the sharing space—is important because it’s yours and only yours. I hope you can realize that it is okay to work through fear and do something anyway. Hesitation and fear are valid feelings but they don’t have to be the end all be all. They can work in conjunction with forward motion. I hope you realize that you can do hard things; I hope you realize you can do anything. I hope you realize you are not alone in doing so. 

Sure, writing a blog is not a big thing. But owning fear is. And owning who you are and what you are, beneath that fear, definitely is.

So, let’s do this, year 5. Let’s do it together. Here’s to owning what is ours, owning the space we take up in the sharing space, and being proud of our journey. 

You can do it. Thanks for being here while I do it, too. 

Lyme Month Day 1–Welcome Back!

Hi friends. We’re back with year five of blogging every day of May for Lyme awareness month! 

Last year I was not able to finish the month. I didn’t blog everyday like I planned. I was struggling. But I finished the month with a lot of hope for myself and a promise to you. I hoped that I would be out of treatment this year and doing so much better. And I promised you that I would be back this year. 

Half of that came true. 

I kept my promise. I am back this year. 

And things are different. I’m a year older, a year stronger, and a year deeper into this journey. This past year has brought a lot with it. I have a lot of things to share with you this month—a lot of things that I hope will help you, things that I hope will help me, and things that I just simply think need to be said. I’m looking forward to this month and I hope you are too! 

Thank you so much for being here with me. If this is your fifth year here, too, thank you! Thank you! You’re amazing. I’m so grateful. Thank you for helping me spread the awareness that matters so so much. 

Check back in tomorrow! I can’t wait to get this month started with you. 

Xoxo 

Seven.

Seven. 

Today marks seven years since I started Lyme treatment. Seven years ago I swallowed the first pill on this journey. The first literal pill, of course. I swallowed the first metaphorical pill long before that. 

I remember that appointment seven years ago today like it was yesterday. I remember the tears falling down my face as my doctor handed me the prescriptions. I remember the relief and also the fear that came along with those little pieces of paper. I remember thinking that we were on to something, my doctor and myself. That we were going to beat this beast together. 

Never in my wildest imagination could I have seen myself where I am today. In so many ways. 

Seven years ago. 

Seven. 

I did my best to ignore the emotions that came with that realization this morning when it popped up on my Facebook. I didn’t tell anyone. I didn’t post anything about it until now. I didn’t want to make a deal out of it. I tried my best to push the emotions to the back of my mind. But, ultimately, they’re there. They’re very much there. A decade—seven years of treatment plus a few years before—of this battle brings a lot with it. 

And I think that’s okay. 

Seven years...Of pain. Of fear. Of frustration. Of anxiety. Of confusion. Of exhaustion. Of loss.

Seven years...Of growth. Of strength. Of change. Of love. Of friendship. Of hope. 

Here’s to seven years. And here’s to hoping this is the last.