Today I don't want to talk about Lyme. I don't want to do it, so I'm not going to do it. Instead I'm going to tell you 10 random things about me that you might not know! 10 things that make me more than my Lyme.
1. I only buy green toothbrushes.
2. I am borderline obsessed, in the least creepy way possible, with Idina Menzel. I saw her twice in one week this past summer.
3. I never use just one emoji. I always put at least two in a row. Normally three.
4. I have a birthmark on my ankle that is shaped like the Statue of Liberty. And 13 other birthmarks.
5. I collect smashed pennies and get super excited when I see a penny machine somewhere.
6. I will not walk on a storm drain or a grate on a sidewalk if I can at all avoid it. I'm convinced there are dead bodies in them.
7. I have a phobia of Popsicle sticks.
8. I love having things written down. If I could handwrite everything, I would. I love handwritten notes, addressing envelopes, having a paper planner, all of it.
9. I fully believe in sending random text messages to remind the people in my life that I love them. I am all about little reminders like that and I will never be too busy or too anything to take the time to do it. You never know when someone needs it.
10. I hate the smell of crayons.
So, there you go! 10 random things about me! Tomorrow I'll be back with Lyme things, but today I couldn't do it. And that's okay!
There's more to me than Lyme. And that is okay too.
Thanks for taking this journey with me! You are more than your struggles too, whatever they may be! Whatever you are going through, you can do it! If no one else has told you today, I believe in you.
Sunday, May 8, 2016
Saturday, May 7, 2016
This Body 2.0
A while ago, I wrote a post called "This Body." And, while I do feel the way I felt when I wrote that post--while I do love the body that I live in--it's also so, so very hard sometimes to live in a body that is fighting so hard against you. Sometimes it's so hard to love a body that doesn't love you back.
Tonight was one of those times.
When I look in the mirror, I see eyes that don't work the way they are supposed to work anymore. I see an eye with one pupil that is bigger than it's supposed to be. I see that same eye that falls to the left without my glasses on. And I see eyes that sometimes fill with floating Lyme bacteria when I least expect it. Terrifying, unsettling, spiral shaped monsters in my eyes.
I see cheeks that turn red when I don't feel well. Giving away our secret. Making our invisible illness not so invisible. I see cheeks that puff up on mornings when I wake up swollen. For no reason other than the fact that I have Lyme. I see cheeks that used to just be rosy and now are just angry.
I see a mouth that swells up without warning. I see teeth in that mouth that are yellow from years of poison being put through them. I see a smile that is so hard some days. I see lips that speak the words that save me--to my doctors, to my friends, to my family, and to myself as I tell myself that I am going to be okay.
I see scars--on my chest from my ports, on my arms from IVs, on my hands from IVs, and on my leg from surgeries. I see weight I don't want, in places I don't want, from years of medicine I wish I didn't have to take.
I see a body that I feel like I'm floating outside of but desperately trapped inside of at the same time.
I love the body I live in because I'm doing just that, living, in it.
But sometimes it's just so, so hard to love a body that doesn't love you back.
Tonight was one of those times.
When I look in the mirror, I see eyes that don't work the way they are supposed to work anymore. I see an eye with one pupil that is bigger than it's supposed to be. I see that same eye that falls to the left without my glasses on. And I see eyes that sometimes fill with floating Lyme bacteria when I least expect it. Terrifying, unsettling, spiral shaped monsters in my eyes.
I see cheeks that turn red when I don't feel well. Giving away our secret. Making our invisible illness not so invisible. I see cheeks that puff up on mornings when I wake up swollen. For no reason other than the fact that I have Lyme. I see cheeks that used to just be rosy and now are just angry.
I see a mouth that swells up without warning. I see teeth in that mouth that are yellow from years of poison being put through them. I see a smile that is so hard some days. I see lips that speak the words that save me--to my doctors, to my friends, to my family, and to myself as I tell myself that I am going to be okay.
I see scars--on my chest from my ports, on my arms from IVs, on my hands from IVs, and on my leg from surgeries. I see weight I don't want, in places I don't want, from years of medicine I wish I didn't have to take.
I see a body that I feel like I'm floating outside of but desperately trapped inside of at the same time.
I love the body I live in because I'm doing just that, living, in it.
But sometimes it's just so, so hard to love a body that doesn't love you back.
Thursday, May 5, 2016
"All you have to do is stay alive"
Today I heard a quote that really stuck out to me. Someone said "a birthday is just a birthday--all you have to do is stay alive for another 365 days."
And while, technically, he was right--a birthday is a celebration of being alive for another 365 days--I would never look at staying alive as "all you have to do."
Being alive is nothing to ever take for granted. Ever.
Maybe it takes being sick to appreciate that, but it shouldn't. It shouldn't take struggle to know that life is precious. And it shouldn't take fearing for your life to know that you want to live it more than anything.
A birthday should be celebrating that you GOT to be alive for another 365 days. Not that you had to.
Every morning that you wake up is a lucky morning. Every night that you lay your head down on the pillow is something to be thankful for. Every friendship that you make is a blessing. And every chance to make a difference in someone else's world is a chance that you should take; you never know who needs you.
So, try something for me. Make a conscious effort to stop, take a breath, and know that in this moment you are alive and that is nothing to ever be anything less than absolutely thankful for.
Being sick, living with the uncertainty of an illness, and not knowing what your body is going to throw at you next does give you the advantage of showing you the importance of being thankful...but you can do it too. Even if you aren't sick. I know you can.
It's worth it.
And while, technically, he was right--a birthday is a celebration of being alive for another 365 days--I would never look at staying alive as "all you have to do."
Being alive is nothing to ever take for granted. Ever.
Maybe it takes being sick to appreciate that, but it shouldn't. It shouldn't take struggle to know that life is precious. And it shouldn't take fearing for your life to know that you want to live it more than anything.
A birthday should be celebrating that you GOT to be alive for another 365 days. Not that you had to.
Every morning that you wake up is a lucky morning. Every night that you lay your head down on the pillow is something to be thankful for. Every friendship that you make is a blessing. And every chance to make a difference in someone else's world is a chance that you should take; you never know who needs you.
So, try something for me. Make a conscious effort to stop, take a breath, and know that in this moment you are alive and that is nothing to ever be anything less than absolutely thankful for.
Being sick, living with the uncertainty of an illness, and not knowing what your body is going to throw at you next does give you the advantage of showing you the importance of being thankful...but you can do it too. Even if you aren't sick. I know you can.
It's worth it.
Wednesday, May 4, 2016
Failure.
I've talked on my blog about feelings of failure before. A few times, I think. But this is a new year. I have new readers. And I have new feelings. And right now those are feelings of failure. So I'm talking about them again. Because maybe I'm not alone. Maybe you're feeling them too. And maybe you need to read this today.
Chronic illness and feelings of failure go hand-in-hand, I think. But really, sometimes life and feelings of failure go hand-in-hand, don't they? It's hard not to feel like you're failing when life doesn't go the way you expect it to. And when you're sick, it rarely ever goes the way you expect it to.
I went to college. Graduated college. Did my internship. Passed my certification exam. Did everything the way I was supposed to. And now look at me. I'm not doing anything I planned to be doing. I'm not at all where I planned to be.
It's hard not to feel like I'm failing. It's hard not to feel like everything I worked so hard for was for nothing. And it's hard not to be afraid that I will never get back to what I wanted for myself.
But I also have to be proud of myself for every day that I get out of bed when it feels impossible. I have to feel like I accomplished something when I get through a really difficult day. And I have to be happy with a good day even if it's not a day doing what I thought I would be at this point in my life.
No matter how hard it is.
So if you are sick and feel like you're failing too, you aren't. You are winning every day that you are breathing. You are the champion of your life. You can do anything. I believe in you.
Chronic illness and feelings of failure go hand-in-hand, I think. But really, sometimes life and feelings of failure go hand-in-hand, don't they? It's hard not to feel like you're failing when life doesn't go the way you expect it to. And when you're sick, it rarely ever goes the way you expect it to.
I went to college. Graduated college. Did my internship. Passed my certification exam. Did everything the way I was supposed to. And now look at me. I'm not doing anything I planned to be doing. I'm not at all where I planned to be.
It's hard not to feel like I'm failing. It's hard not to feel like everything I worked so hard for was for nothing. And it's hard not to be afraid that I will never get back to what I wanted for myself.
But I also have to be proud of myself for every day that I get out of bed when it feels impossible. I have to feel like I accomplished something when I get through a really difficult day. And I have to be happy with a good day even if it's not a day doing what I thought I would be at this point in my life.
No matter how hard it is.
So if you are sick and feel like you're failing too, you aren't. You are winning every day that you are breathing. You are the champion of your life. You can do anything. I believe in you.
Sometimes Lyme is hard.
Sometimes Lyme is hard.
Sometimes you wake up in the morning and your tongue is so swollen that you can't close your mouth around it. For no reason. No reason other than the fact that you have Lyme. Sometimes your clothes hurt. Sometimes everything hurts. Sometimes you walk across the room and the carpet hurts the bottom of your feet like it's little tiny needles piercing your skin with each step. Sometimes the sheets on your bed feel like sandpaper. So you can't escape the carpet there either. Sometimes the air even hurts as it hits your face. So going outside isn't a choice. Sometimes there's no escape from your own body. Sometimes all you need is a hug. But that will hurt too. So you don't even ask.
Sometimes you're scared. You're scared of how you're feeling. You're scared that you won't ever feel okay again. You're scared that you don't actually remember what it feels like to feel okay.
Sometimes you sleep a lot. Sometimes it's all you can do. Sometimes you wake up, move to another place and then go back to sleep. Sometimes that's all you can manage in a day. And sometimes you have to let that be okay.
Sometimes you can't talk to your friends. Sometimes it's easier to just be quiet than it is to explain how you're feeling. Sometimes you write a text message ten times and delete it every time instead of sending it because you don't want to be a burden. Sometimes you feel like a burden anyway. Sometimes means always in this case.
Sometimes you can't put the words together to write your blog. Sometimes you try anyway. Sometimes you get something like this. Sometimes your brain is a mess.
Sometimes Lyme is hard.
Sometimes you wake up in the morning and your tongue is so swollen that you can't close your mouth around it. For no reason. No reason other than the fact that you have Lyme. Sometimes your clothes hurt. Sometimes everything hurts. Sometimes you walk across the room and the carpet hurts the bottom of your feet like it's little tiny needles piercing your skin with each step. Sometimes the sheets on your bed feel like sandpaper. So you can't escape the carpet there either. Sometimes the air even hurts as it hits your face. So going outside isn't a choice. Sometimes there's no escape from your own body. Sometimes all you need is a hug. But that will hurt too. So you don't even ask.
Sometimes you're scared. You're scared of how you're feeling. You're scared that you won't ever feel okay again. You're scared that you don't actually remember what it feels like to feel okay.
Sometimes you sleep a lot. Sometimes it's all you can do. Sometimes you wake up, move to another place and then go back to sleep. Sometimes that's all you can manage in a day. And sometimes you have to let that be okay.
Sometimes you can't talk to your friends. Sometimes it's easier to just be quiet than it is to explain how you're feeling. Sometimes you write a text message ten times and delete it every time instead of sending it because you don't want to be a burden. Sometimes you feel like a burden anyway. Sometimes means always in this case.
Sometimes you can't put the words together to write your blog. Sometimes you try anyway. Sometimes you get something like this. Sometimes your brain is a mess.
Sometimes Lyme is hard.
Monday, May 2, 2016
One Year Older, One Year Wiser.
It's been a long time since last May 1st! 366 days, to be exact. I'm a whole year older. And, I wish I could say that I'm a year healthier. Unfortunately, that's not true.
But, I do think that the phrase "a year older and a year wiser" stands even more true when you're sick. I've learned a lot this year. A whole lot. About myself. About Lyme. About life. About what matters. And about what really doesn't.
And, by the end of this month I hope that if I'm able to teach you something too.
I hope that if you already have Lyme you will leave this month knowing that you aren't alone. You are strong. You can do anything you want. Even if you have to do it from your bed, from the car on the way to the doctors office, or from a hospital bed sometimes. If you want it, you can do it.
If you love someone with Lyme, you aren't alone either. I know it's not an easy road. Loving someone who just can't get better feels like a never-ending battle that you just can't win for them. But I can also tell you, with 100% certainty from the side of the person you are loving, you are appreciated more than you know.
And, I hope that if you don't have Lyme you learn that it is 1000% worth it to take every single preventative step that you can take to keep it away. It may not seem like a big deal before you have it, but it is. Is is a big deal. It is life-altering. It's heart-shattering. It's nothing you can imagine until you live it. And it's nothing I ever wish for you. Ever.
So, as I continue my Lyme journey this month, I'm glad you're here to learn with me. I hope that at the end of this month you will be one month wiser, too.
But, I do think that the phrase "a year older and a year wiser" stands even more true when you're sick. I've learned a lot this year. A whole lot. About myself. About Lyme. About life. About what matters. And about what really doesn't.
And, by the end of this month I hope that if I'm able to teach you something too.
I hope that if you already have Lyme you will leave this month knowing that you aren't alone. You are strong. You can do anything you want. Even if you have to do it from your bed, from the car on the way to the doctors office, or from a hospital bed sometimes. If you want it, you can do it.
If you love someone with Lyme, you aren't alone either. I know it's not an easy road. Loving someone who just can't get better feels like a never-ending battle that you just can't win for them. But I can also tell you, with 100% certainty from the side of the person you are loving, you are appreciated more than you know.
And, I hope that if you don't have Lyme you learn that it is 1000% worth it to take every single preventative step that you can take to keep it away. It may not seem like a big deal before you have it, but it is. Is is a big deal. It is life-altering. It's heart-shattering. It's nothing you can imagine until you live it. And it's nothing I ever wish for you. Ever.
So, as I continue my Lyme journey this month, I'm glad you're here to learn with me. I hope that at the end of this month you will be one month wiser, too.
Sunday, May 1, 2016
Lyme Month--Year 3!
Well, here we are again! It's May 1st. And you know what that means? It's Lyme awareness month! And you know what that means? I'm back to blog every day in May!
But let's be real for a second before we get this party started, shall we? I've been having a really big internal (and sometimes external if I trap a victim) debate over whether or not to do this this year. I have been really going back and forth over whether or not I have anything worth sharing, let alone a whole month's worth of things worth sharing. And mostly, I have been struggling to decide if I'm okay enough to write for a whole month.
Yeah, I just threw that last one out there.
You see, life has this way of throwing things at you. Lyme life has this way of throwing things at you while it's standing on top of you and also dangling you off of a cliff while it's holding onto you with something super sharp and also stacking elephants on top of you and asking you to sing the alphabet backwards all at the same time.
And that's what is happening to me right now.
So I wasn't going to write this month. Mostly because I thought I'd be lying to you. I thought I'd be lying if I came here and talked about Lyme awareness and spread positivity while I felt all of that weight on me. I thought I'd be lying if I told you just the sunshiney parts and left out the rain. But, the fact of the matter is that in not writing I would be lying to not only you but myself. I would be avoiding the truth. I would be lying by omission. And that's just as bad. And does no one any good.
So, if you're ready for another bumpy ride this month, I'm back. Let's do this.
But let's be real for a second before we get this party started, shall we? I've been having a really big internal (and sometimes external if I trap a victim) debate over whether or not to do this this year. I have been really going back and forth over whether or not I have anything worth sharing, let alone a whole month's worth of things worth sharing. And mostly, I have been struggling to decide if I'm okay enough to write for a whole month.
Yeah, I just threw that last one out there.
You see, life has this way of throwing things at you. Lyme life has this way of throwing things at you while it's standing on top of you and also dangling you off of a cliff while it's holding onto you with something super sharp and also stacking elephants on top of you and asking you to sing the alphabet backwards all at the same time.
And that's what is happening to me right now.
So I wasn't going to write this month. Mostly because I thought I'd be lying to you. I thought I'd be lying if I came here and talked about Lyme awareness and spread positivity while I felt all of that weight on me. I thought I'd be lying if I told you just the sunshiney parts and left out the rain. But, the fact of the matter is that in not writing I would be lying to not only you but myself. I would be avoiding the truth. I would be lying by omission. And that's just as bad. And does no one any good.
So, if you're ready for another bumpy ride this month, I'm back. Let's do this.
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