Thank You, Lyme Disease 

Dear Lyme Disease,

Thank you. 

I know what you’re thinking, why should I be thanking Lyme?

Lyme Disease, you may have pushed me down…but I’m right back up. 

9 months ago, I stopped walking. 

9 months. 

I couldn’t even move my legs. I couldn’t so much as touch my legs without screaming in pain. 

Here’s a list of what you can do in 9 months:

  • Have a baby
  • Grow 4.5 inches of hair
  • Watch a butterfly appear from its cocoon 
  • Grow a pineapple plant 
  • Stop walking

Out of that fun short list, I ended up with the last one. I still think back to this and cry about it. How can you not?


Along with my shiny new wheelchair, I had to get a pretty little port. This thing has caused me so much pain and tears. 

Without it though, I’d probably be dead. 


Along the way, I found things that helped ease the pain. Things like yoga and massage have helped a ton. 


I also had two spinal taps, gall bladder surgery, and more. Yeah, it’s been a fun ride. 


After months of pain and tears and feeling like death, it happened. 

I walked. 

And I continue to walk!

I haven’t touched my cane in 2 weeks. 


Because of all of this shit, I’ve been able to understand my body. I know what my body wants and doesn’t want. 
In just 9 months, here’s a list of what I’ve done:

  • I’ve made the wonderful decision to NEVER go back to a public high school. I’ve learned more this year- out of school, than I have sitting in that classroom. I have enrolled in an alternative school that allows me to continue to travel, run my business and live my life while reviving an extraordinary education  
  • I’ve been asked to be on the speaker’s panel at the Writer’s Conference at Hollins. 
  • I’ve been asked to teach a class of doctors at Carilion about my disease. Let me repeat that for those in the back, a class of doctors. 
  • I’ve started a business.  
  • I’va become a spokes person for Children’s Miracle Network- having appeared in several radiothons and events. 

That’s just the start of it, I have more plans that have yet to be announced!

 And to answer your question: No, I can’t ever “stop”. Someone once said to me, “You just don’t stop, do you.” 

Nope! Why would I stop, when there’s so much to do?

Thank you, Lyme Disease. Thank you, thank you, THANK YOU. 

Of course, my fight doesn’t stop here. I’ll be fighting until there’s a cure, and I’m so ready for this fight. 

Bring it, Lyme. 

Love,

Someone who’s totally kicking ass 😘
Special thanks to:

https://bikramyoganyc.com

https://www.carilionclinic.org/hospitals/carilion-clinic-childrens-hospital/childrens-miracle-network

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Tilt tables, Echos, EKGs…Oh My!

For the past few months I’ve been having some bothersome heart problems. Naturally, we blamed this on my Lyme Disease but, it was still very concerning. We ended up going to a local (and wonderful) Cardiologist who decided to put me on a Holter Monitor.

You can read about that {Here}

This week was the week of testing!

I started off my Monday morning in the Hospital at 6am for a Tilt Table Test.

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Basically, a Tilt Table Test is used to diagnose PoTS and other forms of dysautonomia.

How it works: You lay flat on a table (or really hard bed) and they check your Resting Heart Rate for 5 minutes. Then, the whole table lifts straight up and your Heart Rate either sky-rockets or drops. Some people pass out, others just have symptoms.

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They took my blood and started me on a Saline Drip. It took a little over an hour, although we were in the hospital for about 3 hours all together, and I could then go home.

They couldn’t tell me anything 100%, other than “your heart rate is way to fast”.

Wow! Thanks Doctors!! Didn’t notice!!

This morning, I got the pleasure of being there at 8am, instead of 6am. I had an Echo (echocardiogram) done and it was interesting!

Think- an ultra sound on your chest.

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I have a new found love for the heart. After watching my heart do its [heart]thing, I am now so interested in the heart! I got to watch and listen to my heart in a whole new way and it’s so exciting!

This took about an hour and a half all together and it was easy-peasy.

Like the paper shirt?

new 1.jpg                                                 LOOK HOW COOL THIS IS!!

We didn’t see anything weird from the echo, but my cardiologist will be going over it and I go in again on Monday to see what’s up.

I’ve also been recommended to another type of cardiologist to deal with the electro waves of my heart, an electrophysiologist cardiologist to be exact.

Other than my heart acting up, I feel like I’m getting stronger by the day. 

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Fun tip: Hospital selfies are always acceptable  🙂

48 hour Heart Monitor. . . No Thanks

Have you ever been stuck on a heart monitor for 48 hours and tried to go on with your day as if it wasn’t there? No? Just me? 

This past weekend I was on a heart monitor-“Holter Monitor” to be exact. 

It freaking sucked. 

I guess you’re wondering why I was on this monitor. 

Here’s your why; Lyme Disease affects every organ it can, until it just sucks you dry. 

For instance, I was in the hospital this past Thursday because my lungs decided to stop working…thanks Lyme. 

Of course, I don’t let this sucky disease stop me, But sometimes I don’t have control over it. 

It happens, my Lyme spread to my heart and it needs help, what else can I say? 

  
After having a few sets of cold hands touching me, I was all hooked up! 

Now this was visible, cold, and annoying. 

Oh-you know I rocked it though. 

  
Sleeping with this freaking Heart Monitor was awful and painful. I had to sleep on my back and TRY not to move. 

All they told me was to go on with my daily activities, as if it wasn’t there. 

So I did! Kind of. 

I went on a walk! Last time I went on a walk, I fainted…so I brought my little brother along with me for safety reasons (also he sings with me when we go on walks) 

  
After two days of this baby attached to my hip -literally. I got to take it off! It also just so happened to be de-access day…so all my needles and wires got to come off! 

Hopefully this heart monitor extravaganza will tell us why my heart has decided to be so cranky. 

Pain, Tears, Theatre.

This past week/weekend I was in an incredibly cute show called, “You’re a Good Man, Charlie Brown”, where I played the infamous character Lucy.


Lucy was one of my favorite roles, but also one of my hardest.

Since getting very sick, I haven’t been able to sing or dance or anything like that. I’ve recently moved down to one crutch and figured ‘why not’?

I could actually name several reasons why it was a bad idea. 

But I did it anyway!

The very first day of rehearsal was the first time I had done any “activity” for more than 2 hours in about 6 months. Let me just tell you, I was exhausted. By the end of the day I was ready to give up. I even called my friend, in tears, talking about how much pain it had put me in and how I wanted to drop out. I knew deep down, that I wasn’t going to drop. I needed this. I needed this to prove to myself that I’m not just some sick girl who can’t do anything.

So I continued on to the next day, keep in mind that my insomnia had hit me HARD this week and I only slept 3 hours a night.

A big part that kept me in this show were the kids. When I walked in, their eyes lit up in awh, “Lucy, sit next to me!!” “Lucy what’s that thing in your chest?” “Lucy why do you sleep so much during rehearsal?” “Lucy, you’re my favorite character.”-yes, they actually called me Lucy.

I hadn’t danced since last September-keep in mind I couldn’t even move my legs about 3 months ago-and I was dancing! I was dancing on one crutch! I was standing on boxes and jumping around! Oh god, it felt amazing. Well, mentally it felt amazing. Physically, I was in tons of pain and dizzy and felt terrible. It was so worth it.

The days went by fast and it was time for opening night. The first show went great, everyone did well and it was tons of fun. I took pictures with little kids, as they told me I was their favorite character.


When I got home from that show though, I was in so much pain that I could do nothing. I couldn’t even move. All I could do was lay down and cry. It was awful. I did sleep though! (Thank you pain medicine)

Holding the pain and tears back, I went on to do the next two shows. I had all my friends and family come! My mom was very emotional, as her daughter who couldn’t even walk was now jumping and dancing!


Roanoke Children’s Theatre put on an amazing performance of “You’re a Good Man, Charlie Brown” and I’m so excited to see what they have for me in the future.

Who knows, next time I’m on stage I might not have that crutch(;


http://roanokechildrenstheatre.org

Bikram vs. Lyme Disease

“You can’t do Bikram, your heart isn’t ready.” 

About a week ago, my doctor told me this. 

“Bring it.” , I replied. 

I was ready to stand in that 105 degrees room and sweat my heart out. 

I didn’t care how sick I am. 

I didn’t care that I have to wear a mask during class. 

I was ready. 

I strayed from Bikram for awhile, being so immobile and all. 

Last time I went to Bikram, it was New Year’s Eve and I was still very wheelchair bound. 

  
It was fun, but emotionally damaging. It was hard to not be able to stand and do everything everyone else could do. 

But now, I’m able. I am able to do everything everyone else can do WHILE on crutches! 

I stood through the standing series and sat through the sitting series. 

I sweat out my pain, with my mask on my face. 

I sat in the heat, absorbing the energy. 

I laughed at the fact that I was doing yoga.

 If you had asked me 4 months ago if I would be standing and participating in Bikram, I’d laugh and say ‘no way‘.

Today, I laugh because it’s happening. 

Today, I am able to partake in the class. 

Today, I am okay. 

Today, I am happy.   

 
“You tried harder than most people in the class”

Yes. I. Did

http://www.bikramyoga.com

https://bikramyoganyc.com/pages/upper-east-side/

She has a necklace, I have a port 

She has a necklace, a bright pretty stone.  

I have a port, a bright pretty needle. 

She puts on her makeup. 

I put on my mask.

She lets her necklace dangle from her neck, as if there was no tomorrow. 

I let my port show from my chest, so everyone can see how strong I am. 

She doesn’t have a flaw on her body. 

I could count my flaws in five hands. 

She’s on a sports team. 

I’m learning how to walk. 

She goes to school everday. 

I haven’t been to school in months. 

Any differences? Yes. 

What are they, though? Sure, you see some simple differences on the outside, but what’s on the inside?

On the inside, she’s scared. She doesn’t want to go to school, in fear of being judged. She cries herself to sleep at night, every night. She has learned how to smile through the pain. 

But on the outside? She’s perfect

Everyday we pass by people. We don’t know the lives of everyone we pass. We don’t know what they’re going through. Many people, have something known as an Invisible Illness

An invisible illness is exactly what it sounds. It’s an illness. That’s invisible. 

Everyday, I can bet you, you pass by at least 20 people with an invisible illness. 

20 people 

For me, that’s a lot. For you, it could be nothing. 

People with invisible illnesses hear things like, “but you don’t look sick” and “it’s all in your head”. Anyone hear something like that before?

Pretty soon, I’ll be hearing those things again, too. 

Pretty soon, I will no longer need my crutches. I will no longer need my port. 

It will just be an invisible illness. 

  
This is me, a few months before and after my illness became visible…

Notice the necklace?