Scars.

I've been thinking about writing about my scars for a while now. I wasn't sure exactly how I wanted to go about it. But today I was inspired by a fellow Lymie, who posted pictures of her scar on Facebook, to go ahead and do it. 

If you don't know the story of my scars, I'll fill you in a little bit.

I have had two ports in the last three years. The first one was put in on May 15th 2012, three days after I graduated college. It was on my left side. I had it for almost a year before it stopped working. The tube shifted in my chest and got kinked under my collar bone. After a couple of procedures to try and fix it from the outside, (including one which left me with bruised hand prints on my chest from them trying to move it back into place. Not cute.) I had it removed and another one placed in the right side of my chest in the same surgery. That was April of 2013. In April of 2014, I had that one removed because I was at the point where my body couldn't take anymore antibiotics. So that was the end of my port journey. But not the end of my scars. 

I have a very serious love/hate relationship with my scars. They're huge. They're puffy. They misshapen. They're uneven. 

But they're a physical reminder of the fact that I'm making it. I'm stronger than what tried to bring me down. Sure, I'm still sick. Very sick, most of the time. But those scars represent three years that I survived. Three years that may have ended differently if it weren't for the doctor who finally helped me get the diagnosis I needed to get that treatment that caused those scars. 

So yes, sometimes I get stared at in public. And by sometimes, I mean always. Whenever I go out with my scars showing, I get weird looks. I hear whispers. And words that aren't really whispers when people think they are. People are rude. Stares are ugly. But, I have come a long long way in realizing that my scars aren't. 

So, I'm doing it. I'm posting this picture. Without anything else to distract from them. No hair that takes over the picture. No outfit that makes you look at it instead of my scars. No face to look at instead. Just my scars. Right out there for you like they are for me every day. 

It may not be a big deal for you. They may just look like weirdly colored spots on my chest. But it's a big deal to me. They're always going to be there. They're always going to be a part of me. And one day I will not even think about them anymore. And this is a step towards that day. 

Tired.

Being tired is a normal thing. Being chronically tired isn't. 

You get tired from doing things like working hard. Running. Staying up late. Traveling. Studying.

You get chronically tired from waking up. Getting out of bed. Leaving the house. Walking. Breathing. 

You can fix tired by resting. Sitting down. Putting your feet up. Taking a nap. Sleeping. You can't fix being chronically tired. 

Being chronically tired doesn't make sense to people who haven't experienced it. And it's easy to look at someone who is chronically tired as being lazy. It's easy to think that someone who sleeps all the time is just sleeping all the time. But that's couldn't be further from the truth. 

It gets to the point where you physically have no choice. Like I said in another post, you either lay down or your body will make it happen for you. You either sit down or your legs quit working with you. You either close your eyes or your body will continue to feel like it's floating, spinning, and shaking, all at once. You either fight it and regret it later, or you give in and get up later and try again. 

It's hard to give into it. But it's even harder to deal with not giving in. 

And even if you do give in, it doesn't go away. So yes, yes I'm always tired. But there's nothing I can do to fix it. 

If you have the option of taking a nap and feeling better, do it. If you are able to sleep at night and wake up feeling rested, don't take it for granted. If you're just tired, do what you've got to do to fix it. 

And, most importantly, if someone in your life is chronically ill, and therefore chronically tired, believe them. 

Better safe than sorry.

Today's post is going to be short. But important. 

Today I got a text message from someone I've known for a while, with a question about a tick. And as weird as that sounds, it made me so happy. Not happy that they were having to deal with a tick or the fear of Lyme, but that I'm getting my point across. I'm making the impression that awareness matters and that Lyme is serious. 

Sometimes it's tricky to get the point across that it's serious without making people panic. But, at the same time, if panic is what it takes to keep one more person from getting sick like I am, I'll press a panic button if I have to. 

I'm going to try to drill the point in one more time--if you find a tick, get it checked out. If you get a tick, and you don't have a bullseye rash, still get it checked out. Demand a test. Demand treatment. One round of antibiotics will help you if you get it quick enough. 

Better safe than sorry. 

Better safe than sick for the rest of your life. 

Lyme-life must-haves.

I was trying to think of things that I could write about when I don't feel like getting deep or talking about how I feel. And I realized, as I was thinking about it, that I was looking for a way to survive the month of daily blogging. Not survive in a negative way, in the sense that it's not something I want to do and I'm trying to figure out how to just get through it til it's over. But survive in the sense that it takes work. Sometimes it's not easy. Sometimes you don't want to face it, for one reason or another. Sometimes it's exhausting. 

It's kind of like living with Lyme. 

A big part of living with Lyme, or any chronic illness or pain, is figuring out how to keep going no matter what. How to survive it. 

So, I decided I would make a list of my top 5 Lyme-life survival items. These are the things that I have found that make a difference in my tough days.

1. Gatorade--I made a post last year about how to get through summer with Lyme, and I wrote then about Gatorade as well. But, here I am, a year later, and it's still on the list. When I have a headache, I drink Gatorade. When I am shaky, for one reason or another, I drink Gatorade. The other day when I was getting injections at the neurologist, the girl giving the injections told me that because my blood pressure was low already before I got them, and because getting injections lowers your blood pressure too, drinking Gatorade would help with the dizziness and all together blah-ness. Such a multitalented beverage! 

2. Cold patches/headache patches--this is a newly discovered item that I'm not sure how I made it this far without. They're made for kids, to be used when they have a fever. But they were suggested to me by a Lyme friend to use when I have a headache. And, they're great. The only downfall is that they tend to get stuck to your bed sheets and you are sent on a mad-headache-patch-hunt in the morning trying to find it in your bed. 

3. Peppermint essential oil spray--I have a major sensitivity to smell. And I also am super affected by fluorescent lighting. Both of those things make me incredibly nauseous. And peppermint helps nausea. So keeping peppermint essential oil with you is super helpful. I got it in spray form, and the kind I got is safe to be applied directly to your skin as well. I can either spray it so the smell is just around me (which could potentially get weird in public places, but it's nice at home or in the car) or I can spray it on my wrists, and rub it under my nose so the smell is right there for me. (Of course, make sure you check if the kind you get can be applied to your skin without a carrier oil. I wouldn't want you to burn your skin off and then blame me. I mean, I wouldn't want you to burn your skin off at all. But, especially from my suggestion.) 

4. Apps--there are three iPhone apps that I recommend if you're a Lymie. 

The first is "Instant Heart Rate." You place your finger over the camera on the back of your phone and it reads your heart rate. Of course it isn't going to be exact, but it is close enough to be helpful. When I'm feeling like I'm going to pass out, or when my heart feels funny (if you're sick, you know what I mean. It literally feels like your heart is just like, off. Like it's kind of fuzzy and sort of shaky. It's as weird as it sounds.) I can use the app to give myself a general idea of what's going on. I don't use it too often, but it's nice to know its there. 

The second is a period tracker app. The one I use is "period tracker lite" but there are a few others, as well. This one is pretty self explanatory. But, when you're sick and trying to get a comprehensive view of your symptoms and the way your body is (or isn't) functioning, it's helpful to have something to keep track of things for you. Especially when things don't work like they're supposed to. The other day my new primary care doctor suggested it for me and I already have it, but now I'm passing on that suggestion to you. 

The last one I suggest is "Instant BP." Like the heart rate app, it uses your phone's camera. But this one also requires you to hold the bottom of your phone on your chest while also holding your finger over the camera. It's a little more complicated, and it makes your take the case off your phone to use it. But, again, it's nice to know its there when you need it. It's usually the same, or maybe a couple off from the reading you get from an actual blood pressure machine. Pretty accurate, and it's a nice sense of security. 

Now, if you're thinking that these apps are unnecessary, or that they make me a hypochondriac, that's fine. But when you're in a situation when you have to keep track of a million things having to do with your health, and when you have to track a billion numbers and pieces of data about your own body, you'll take all the help you can get from technology. And, more importantly, when your body crashes without any warning, and you need to know what's going on, having the extra security of things like the heart rate and blood pressure apps can make a huge difference. Also, keeping them on your phone means you can casually use them without making a big show with actually machines and things. 

5. A medical bracelet--I know I've mentioned this one before too, but it's my biggest comfort in my chaotic Lyme life. I was with a group of people the other day that were talking about medical alert jewelry being embarrassing or branding you as a sick person. And honestly, I get that, kind of. I know that wearing a bracelet that says "medic alert" on it announces that I have something going on. But, that's the entire point. It's there in case I am in a situation where I can't make it clear what I have and what that means for what I need. If you have a chronic illness, or any kind of extra needs, and don't have a medical bracelet, I would think about getting one. You can find cute ones, if that matters to you. And you can find super inconspicuous ones, too. They can be life savers. Literally. And they add another level of comfort and security that really can help take away a little anxiety. 

So, there you go! My top 5 Lyme essentials. There are other things I could suggest too, but these 5 are the biggest ones, or the ones I use most often. If you're a Lymie, or have a Lymie in your life, and have any other suggestions, please let me know! I'll take any suggestions I can get. 

I hope maybe there's something on this list that you haven't heard of, or haven't thought to try. 

A little help goes a long way in surviving this crazy, sometimes messy, Lyme life. 

Happiness.

When I first started writing this blog I made a promise to you, and to myself, that I would be honest. No matter how ugly. Or annoying. And today I am not feeling any of it. I can't talk about my Lyme today. I've been trying to tell myself lately that I owe it to you to write everyday. But today I decided I owe it to you, and to myself, more to be honest.

So, today we will talk about happy things instead. Here are 20 things that make me happy. Maybe one of them will make you happy too.

1. My puppy. 

2. Nude nail polish. 

3. A good throwback song on the radio.

4. Turning the air conditioning all the way up in the car until I realize I can't feel my fingers.

5. Shampoo and conditioner that match. 

6. My mom and dad. 98% of the time.

7. A made bed. Just not the bed making process.

8. Vacuum lines in the carpet.

9. Finding out that something is dairy free. 

10. My detangling hairbrush. Because, you know, giant hair. 

11. Fruit snacks. 

12. The fact that I took a billion pictures of my old dog, and can look at them whenever I want. 

13. The number 13.

14. Flip flops.

15. Wearing hoodies and shorts together. 

16. Not having to set an alarm. 

17. Watching flowers/vegetables/etc grow. Because that means I'm successfully not killing them. 

18. Addressing envelopes. 

19. Napping 

20. HGTV

I could go on. But I'm going to take my own advice and do what makes me happy. Right now that is number 19 off of my list. 

Thank you for sticking around even when my Lyme blog isn't about Lyme. Sometimes I just can't do it. 

And I'm slowly starting to realize that that's okay. 

Open your eyes.

This morning I went to the airport. Just me, my bag of medicine in my carry on--the every day stuff, the just in case stuff, the new stuff that I haven't even had the chance to try yet after my appointment yesterday--my headache patches, yoga pants and tshirts, because real clothes hurt, my medical alert bracelet on my wrist, and anxiety all throughout my body. 

After a lovely chat with the guy that checked my bag, about how to pronounce my name (just in case you don't know me in real life, it's spelled Leigh, pronounced like Lee. Just to clear that up.) I got to security. I went through security with my medical bracelet on, after the lady looked at it and realized what it was. The lady behind me tried to go through with her jewelry on, and didn't have the same luck. She proceeded to complain to the security lady that she should be allowed through with her jewelry if I was allowed through with mine. 

Okay. 

I would almost understand if I had multiple bracelets on, like she did. I would almost understand if I didn't have to show it to the security lady. I would almost understand if I didn't take the steps I needed to, or if I made a big deal out of it being a medical bracelet and needing special treatment. But none of that was the case. 

And, in the greater scheme of things, it's not a big deal. At all. But it was just one more reminder of how my life is different. Not necessarily bad. Just different. And honestly, my medical bracelet makes me feel so safe, that I don't really even care that she had a problem with it. I do hope, though, that if she ever has a situation in her life that causes her to need a medical bracelet, that it will open her eyes a little. 

That's another reason I write this blog. To open your eyes. Have you ever thought about traveling with the added difficulty of being sick? Granted it's not impossible, but it's a little more difficult than just packing my clothes and going. 

I'm not telling you this to make you feel sorry for me. There's nothing to feel sorry for me for. I am telling you this to make you think about something that you've probably never thought about before. To make you understand the importance of doing anything and everything you can to ensure that you and the people you love aren't affected by Lyme. 

Yes, there are other situations that make traveling difficult as well, but I can't tell you anything about those. I can, however tell you over and over again the importance of learning about Lyme. Even if it's just reading my blog. Do what you've gotta do. 

Open your eyes. 

It's important. 

"If you're interested..."

Today I had two doctors appointments. At the first, I had 22 injections in my head/face/neck/ears. (By the way, if anyone ever offers you that, say no and run away quickly) At the second, we discussed the fact that now I've "failed enough medicines" that I am eligible for some different kinds of things to try and help my headaches. And, as my neurologist was sitting there describing the new options to me, she kept saying "if that's something you're interested in trying." 

And I wanted to laugh when she said it. Such a weird statement. Such a weird situation. If I'm interested. Of course I'm not interested. But at the same time, of course I am. 

I'm not interested in more injections. I'm not interested in more pills. I'm not interested in new things that may or may not work. I'm not interested in being sick. I'm not interested in more appointments. 

But I'm absolutely, 100%, hands down, no doubt about it, interested in feeling better. 

I would be dumb to turn down something that might help me, when a billion other things haven't. There's got to be something that does, right? But sometimes I think I'm also dumb to continue to put myself through this. I wouldn't wish this stuff on my worst enemy. (Okay, maybe my worst enemy. ...Kidding, kidding.) 

I guess what it comes down to is saying yes one more time. Yes I'm interested in trying. Yes I'm interested in seeing if it works. Yes I'm interested in hoping that this will be the last time I have to say yes. 

No, I don't want to do it. 

But yes, I'm interested.