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. 

Lyme month day 31–That’s a wrap.

Well, here we are again. The last day of another Lyme awareness month. 

I can’t say I killed this one. There were quite a few days that I struggled to post, and a few of those days that I ended up not even posting. But that’s okay. I gave you a very real month and that’s what I promised. Part of spreading awareness is showing that this journey is hard. If I always made it look easy, hopeful, and sunshiney, then I wouldn’t be doing my job very well. I need to show you the hard parts too. The dark parts. And the scary parts. To make you realize that this is not something you want for yourself or the people you love. To make you realize that it really does matter—that the push for more understanding, education, and awareness really is so very important. 

So thank you. Thank you, as always, for being along for the ride this month. Thank you for helping to spread awareness, even if that’s just by becoming more informed yourself. Even if you read my posts and think I’m crazy, you know more than you did before you read them, so I count that as a win. ;) 

And, as you go forward this year remember these important things: 

1. Buy a tick key. DO NOT use essential oils, alcohol or Vaseline to remove a tick. If you do not have a tick key, use tweezers and pinch it as close to the skin as you can and pull up. You can send the tick in to the UMass zoology department to have it tested for Lyme and other tickborne diseases. The website with information on how to send it is: www.tickreport.com 
2. If you have a tick bite and do not develop a bullseye rash, it does not mean you do not have Lyme. Symptoms are going to be your guide, not the rash. If you are concerned, get it checked out. As I’ve said before, it is better safe than sick for the rest of your life. 
3. Do not panic about Lyme, but also do not assume you do not need to worry. Do not assume that you are invincible. It happened to me, it could happen to you. Do not let it stop you from living your life, do not stop going outside, but take the proper precautions when you do to try and protect yourself and the people you care about. Every bit helps. 
4. If someone you love has Lyme, be there for them. Ask them how they need you. And let them still be there for you, as well. Tell them things. Include them in things as they are able. Don’t stop inviting them. Don’t give up on them. Their body is doing that already—don’t do it too. 
5. If you have Lyme questions, ask me! This month is over but I’m not going anywhere. You are not alone if you’re on this Lyme journey in any way. I know it can be intimidating, especially at the beginning. But you never have to face any of it alone. If I can’t answer your question, I will find someone who can. I have people in my life in all different stages of their journeys—someone is sure to have your answer. Or, if you want to look up info yourself, use www.ilads.org. That is the best, most accurate, trusted information on Lyme and other tickborne illness. That’s where you’ll find your best answers. 

And thanks again—I appreciate you. I truly do. 

Lyme month day 29–“You Should See a Psychiatrist”

I saw a new doctor today. Actually, let’s not beat around the bush—I saw a psychiatrist today. And let me tell you, walking into a psychiatrists office for the first time after being told for years upon years that I “just needed to see a psychiatrist” because I was “not really sick” was not an easy thing to do. The time that my mom was told that she needed to get me to a psychiatrist because the list of symptoms that I brought to the infectious disease doctor was “too clinical and had to have been printed offline” was not far from my mind as I walked into the office this morning. The time that I ran out of my pediatricians office crying when he said “oh is that what you want to be wrong with you next?” when we asked about Lyme for the first time, and I ended up being put on depression meds instead, wasn’t far from my mind either as the door closed behind me today. 

Everything inside of me was telling me to turn around and leave. But I didn’t. Everything inside of me was repeatedly reminding myself that I was there because I was choosing to be, not because anyone was making me. But that voice of “you aren’t really sick. You are feeling this way because you want to feel this way. This is all psychosomatic. You are just young and looking for attention. You need to see a psychiatrist before this goes any further” was there too. Like a far away whisper, kind of. But there, nonetheless. Everything inside of me felt like it was being squeezed and simultaneously exploding. 

But I did it. 

I did what I needed to do. For myself. And I think that maybe when all of the feels have calmed down, I’ll feel a little stronger for it. 

And then, while I was talking to her, the doctor mentioned that psych was a “grey science,” meaning that it is something that is different for everyone and it takes a while to figure it out. And she said “I know that’s something you understand, since Lyme is a grey science, too.” 

And that was all I needed. Validation. 

I honestly never thought I would walk into a psychiatrists office. I absolutely think that mental health is of utmost importance. I don’t think that we can heal physically if we don’t also heal mentally. But I didn’t think that I would ever be able to do what I did today. 

But I did it. I needed to do it. And I did it. 

And I think that a little part of my brain that was angry for a really long time might be on its way to being a little less angry. Slowly, but on it’s way. And that’s all I can ask for. One step at a time. 

And if you’re reading this and any of it resonates with you—if you also have been told that you are not sick, that you are faking, that you are just wanting attention, or if you are struggling to take the step towards mental health help for ANY reason at all, any reason in the whole world—you are NOT alone. It can be intimidating. But it is SO IMPORTANT. Because you are SO IMPORTANT. There is no you that is more important than you. So please—if you need a hand, or an ear, or a set of eyes, to help you, I am here. Reach out to me. You are not alone and you deserve all of the good things. I sincerely mean it. And I love you—just in case you need to hear that today, too. 

Lyme month day 27–Bad Advice

I am frustrated, y’all. I am frustrated at the amount of false, and downright dangerous information that is being spread around social media this month as “Lyme facts” or “tick removal methods.” I’m frustrated, I’m sad, and I wish I could reach through the screen to every person that is commenting on the posts and shake them and tell them the truth. Show them the truth. And tell them that they can maybe help themselves even just the tiniest bit by not listening to that bad advice. 

The first thing that got to me this month was the essential oil tick removal method that is going around Facebook. It is a video of someone dripping peppermint essential oil on an attached tick. The oil causes the tick to back out, removing itself from their skin. They say that it’s an easy, painless, removal method. And when I looked in the comments, I saw so many people saying that it was brilliant and that it was so much safer because it got rid of the risk of leaving the head of the tick in your body. What they aren’t aware of, or maybe aren’t acknowledging if they are, is that dripping the essential oil (or dripping anything) on the tick causes it to empty everything from its body into your body. Think about that for a second. It’s as gross, awful, and scary as it sounds. And it’s for sure not something that you want happening.

But the thing that really fired me up and inspired this post today was a series of pictures entitled “Is this Lyme disease?” Each picture had a skin rash/bump/lesion in it and underneath it said whether or not it was Lyme, according to the person who wrote the article. Immediately my guard went up when the first picture was a tick bite, without a bullseye, and it said “No! This is not Lyme disease. This is just a normal reaction to a tick bite. This does not indicate any infection.” 

*Deep breaths Leigh, deep breaths* 

I have shared the statistics many times before here on my blog about how many people who have Lyme get the “classic” bullseye rash. And the numbers are always changing. But, according to the International Lyme and Associated Diseases Society right now, it can be as low as 15%. Fifteen. Percent. Only 15% of people get that bullseye that is recognized as “the Lyme rash.” So, no one. No. One. can look at a tick bite and say it is not Lyme. Hell, no one can even look at a negative Lyme blood test and say it’s not Lyme. So by no means should that article with those pictures and that VERY false information be going around as truth.

If you have a tick bite and for any reason at all suspect that it could be Lyme—you don’t know when you got it, or even if you do know when you got it but you have ANY symptoms that have come on after the bite—get yourself to the doctor. No matter what the bite looks like. Better safe than sick for the rest of your life. 

And, if you see these things floating around social media, say something. Or, if you don’t feel like you can say something, at least don’t share them. Please. 

I’ve said it before and I’ll say it a thousand times—it takes every single one of us.