Lyme month day 8–Sunshine

I have been having some issues lately accepting my picc line. I have had it for a few days short of 7 months, it’s not new by any means at this point, but I’m struggling with it. A few months into having it, it started to feel normal. Getting the dressing changed felt like a thing I just had to do. Looking at it in the mirror even felt semi-okay. But about two months ago, around the time that treatment itself got really hard, I started to resent my picc line. 

And then something came back to me. Something that one of my college professors—someone very important to my journey and also to my life—said to me back when I was struggling with my first port a few years ago. 

She told me that my port was the spot where the sunshine could get in. 

And that made all the difference. All of a sudden my port didn’t seem like a foreign object under my skin (even though it was), it seemed like something that was making things a little brighter. It seemed like something that was helping to take the darkness away. It seemed like something that was going to be okay. 

When I thought about that again recently, with my picc line in mind instead this time, it was a little different, but helped nonetheless. And also made me so grateful all over again. So grateful  that I had a human in my life during some of those hardest days of my life that took the time to help me find the sunshine. 

My port was the first spot that let the sunshine in. Now my picc line, as scary and ugly and weird as it is—I have to believe it’s letting the sunshine in, too. 

Lyme month, day 5–The Little Things

When I was sitting here thinking about what to write for today’s post, I was kind of stuck. I have some bigger topics that I want to write about, but I want to give them more time than I have right now. So I wasn’t really sure what today’s post should be. Then I realized I was scratching my arm. And that gave it to me! 

When I think about my life with Lyme, I think about some big things that have been struggles, of course. I’ve talked about those big, life altering things many times before. But what I haven’t really talked about are the little things. The little things that you probably wouldn’t even think about. The little things that I know I wouldn’t think about someone having to deal with it I wasn’t dealing with them, myself. 

Let’s start with the one that sparked this post topic—my itchy arm. My picc line is covered, 24/7 with an adhesive dressing. I don’t have a specific allergy to the dressing, but think about having a bandaid on your skin, non-stop, for 6 moths straight. It only comes off for 5 minutes once a week for another one to be put back on. The skin underneath of it is blistered, burnt, and itchier than anything I have ever felt before in my entire life. And I can’t truly scratch it because it’s covered in the adhesive plastic. It’s quite literally an itch I can’t scratch. 

The next thing is my hair. I have not washed my own hair in 6 months. If you know me in real life you know that my hair is kind of my pride and joy. It’s the one thing I constantly get compliments on. It’s the one thing that I have going for me. But for the last 6 months it’s been such a struggle. Sometimes I go a week and a half without washing it because I don’t want to have to ask anyone to do it for me. And then when someone else does it for me, it’s not an easy task. It involves me hanging over either the sink or the bathtub while I cover my arm with a towel so it doesn’t get wet. It’s not comfortable, it’s not easy, and it’s frustrating. 

Then there’s the clothes struggle. And this one doesn’t just have to do with my picc line. There is a symptom of Lyme that makes the sensation of fabric too much to handle. I don’t experience it all of the time, but there are definitely times that I do. Waistbands especially. Bra straps. Necklines. Anything restricting. It feels like I’m being strangled, stabbed, and eaten alive by fire ants all at the same time. You’d never know it from the outside because well, I have to wear clothes, so I work around it. But it’s a terrible feeling. And one that I would never know that someone else was experiencing just by looking at them. 

Just a few things to think about. Little things that, like I said, I wouldn’t know that someone with Lyme was dealing with if I had never dealt with them. Something that I don’t think you probably know about me by looking at me. But something that matters, because it’s part of the bigger picture of why awareness and help for this awful disease matters. 

If you are dealing with these sort of things that seem like the little things compared to the ones that feel much bigger, please know that they matter just as much. Every part of your battle—whatever that battle may be—matters just as much. And I see you. 

Thank you for seeing me, too.

Lyme month day 3–Floating.

There’s this weird place in life with a chronic illness where you’re not quite disabled by it, but also not quite totally functional. 

That’s where I am. 

I’m constantly floating in between the days where I am, in fact, stuck in bed and the days where I can go about my normal life all day without a problem. I’m constantly back and forth between looking sick and hiding it really well. I’m constantly stuck between listening to my body and, therefore, doing less than I want to be, and pushing my body and feeling the consequences. I’m constantly in that in-between.

And it’s exhausting. 

It’s exhausting to wake up in the morning and not know where on that spectrum of functionality you’re going to be that day. It’s exhausting to start a day in one place and then have something happen mid day that details you and sends you to the total opposite end of the spectrum. It’s exhausting to have to explain why you can’t do something today when you did something all day yesterday. It’s exhausting to feel like you are constantly floating back and forth. It’s exhausting to have to carry your emotions with you as you float back and forth. And even more so, it’s exhausting to feel like you’re floating back and forth in such an unpredictable body—a body that doesn’t even feel like yours. 

It’s a weird place to be in. Don’t get me wrong, I’m grateful that I’m not bed bound all of the time. I’m grateful that I do have the days on the other end of things. If you know me at all, you know that I am always grateful. But man. The inconsistency is killer. 

So, if someone you know has a chronic illness, take a second to consider this. Take a second to consider that maybe they are floating back and forth, too. Maybe they don’t know which way is up, either. Maybe they don’t know who they are when they look in the mirror, either. Maybe their emotions are feeling so heavy from their back and forth journey. 

Maybe they are just as exhausted as me. 

I’m baaaack!

Hello! I finally was able to get back into my account so here we go—Lyme awareness month, day 1...kinda!

As I write this, I am lying on the bed after I just had my picc line dressing changed. I realized that last year I didn’t have this picc line and wasn’t in the middle of treatment, so I guess we can start there—with a recap of my year from last May til now! 

Since last year I have: 
1. Gotten a picc line in October. 
2. Started IV treatment through that picc line. 
3. Had to get a new picc line in January because the first one re-routed itself from my heart (where it is supposed to be sitting) up into my jugular (where it is not supposed to be sitting)
4. Gone through 6 rounds of treatment. 
5. FINALLY gotten good news about my spleen and liver for the first time in TEN YEARS. 
6. Gotten a whole lot more tired and a whole lot tougher.

So, that brings us to today. I am, like I said, 6 months into treatment. I have hopeful moments. Moments where I think maybe I’m finally going to see the light at the end of this tunnel. And I have moments where that light is nowhere to be found. Lyme is hard. Lyme treatment is harder. But I’m nothing if not determined. And excited to be back here sharing with you again!

Thanks for being here.