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Terrifying Port Removal Surgery

Have you ever seen the movie “Saw”?

About two weeks ago, I got a call from my surgeon’s office. “Would you like to come in and get your Port removed? We got a fax from your doctor and all we need is a date.” I made the appointment for November 2nd at 4:15pm. It was IN-OFFICE. As confused as I was, I just went on with it.

I walked in there with my best friend, Rachel, on one side and my dad on the other. Trying to keep my shit together, I signed the consent form and went on the get changed into my gown. The doctor came in, explained that all he was going to do was numb the site a little and I won’t feel a thing. Boy, was he wrong.

I felt the first needle go right into my scar and then the second and the third. “Do you feel anything? Is this sharp?” (While he was poking me with a knife) “YES”, I cried in pain. “That’s funny because I’m not touching you at all. You must be telling a story.” And then, before I even let out a breath, I felt the knife slowly cut along my already scared up chest. And again, I felt his drag the knife a second time, cutting deeper and deeper to find my port.

“I’m so lightheaded”, I screamed. Almost 2 minutes later, I felt them put a wet rag on my forehead. It helped for maybe 3 minutes.

All I could think about was how much I have been through. I kept replaying this past year in my head. Every surgery. Every hospital stay. Every infusion. It was all over.

Rachel squeezed my hand.

 I focused on the wall in front of me as I cried harder. I let out my pain and my tears on that table. I could hear the nurses crying, too.

A sheet was placed over my head. 

Gasping for air, trying to catch my breath, I could hear a “you’re fine!” and “It’s almost over!” from the man who was cutting me open. I swear, I could feel the scissors cut my insides. One of the nurses put pressure on my neck and they pulled the tube out.

Half way done, I heard a scrape -they found the port- he tugged and pulled but it was so stuck in there that it wouldn’t budge. I was screaming at them. Gasping for every breath I could catch. My eyes were filled with tears. I could hear Rachel crying just as hard as I was.

She squeezed my hand again. 

The port was out. I felt them throw it onto my chest, as If I had just given birth and they put the baby on me immediately after.

We’re not done yet. Next comes the stitches. I felt the internal stitches…my guess is that there are 2 on the right side.

I felt the thick needle puncture my skin over and over again. I felt the string slowly pull my body together.

The doctor covered it up and left the room.

The nurses pulled the sheet down from over my face and I couldn’t move.

Rachel took my mask off my face and looked at me. We were both sobbing. My legs were up to my chest, frozen in shock.

I let out another scream.

“I’m so sorry”, I hear from my sobbing nurse. “I’m so sorry.”

“It’s fine”, I cry starring off at that wall. I could feel the emptiness in my voice. Rachel and I sat together for 5 more minutes just sobbing.

Right as the nurse came back in, Rachel and I were getting dressed. “Do you need anything?” my nurse said with sadness in her eyes.

I let out a smaller, more pulled together cry, “Can I just go home?”.

Dad, Rachel, and I went to the car. No one really said anything.

The only noise during the car ride home was my quiet sobbing.

What the hell was that? Why was I awake? Why didn’t he stop? Why did he place a sheet over my face when I cried harder?

I felt it all.

So I ask again.

Have you ever seen the movie “Saw”?

Electro-what!?

Early this morning, I took a trip to Lewis Gale (I normally stay in the realms of Carilion) for my new electro-cardiologist. I was referred to him through my regular cardiologist. 

My morning started out with waking up half an hour late and rushing out the door. 

Then we watched a little waiting-room TV while the receptionist explained why Trump is perfect to be president…

After having my weight and height taken (gained two pounds and grew an inch!) I was taken into my room. 

While still half asleep I had to get another EKG

*note that I fell asleep during it. 

I had to do a range of “basic heart tests” such as 

  • “Breath in, breath out, STOP BREATHING AND FLEX YOUR ABS”
  • “We’re gonna squat together” 
  • “Deep breath- no, deep breath with your mouth open!!” 

Yeah…he was an interesting Doctor. 

When I tried to make my early morning heart jokes and didn’t even bat an eye; no sense of humor, I guess. 

He also wouldn’t 

take a picture with me so…


I got a selfie with the cool heart monitors. 

After all that he looked at my tilt-table test results and just said my heart rate was too high and my blood pressure was too low. 

I’ve started a medicine called “Atenolol” once a day. It’s supposed to lower my heart rate? 

Over all, it was a good early morning heart doctor visit and I’m excited to see how my new meds help me out. 

Lyme Disease: My Worst Symptoms

Listen, I’m sitting here at 4:00 am, wide awake, and thought this would be the perfect time to write this. 

Since Lyme Disease comes with nearly a thousand symptoms, I’m only going to name my worst symptoms. 

In no particular order, might I add…

Seizures/Paralysis 

I know, “SB, why did you START with this worst one?” , couldn’t tell ya. Thankfully, I haven’t had a seizure in a little over 4 months but, they were the worst. 

Let me walk you though it 

  1. Everything goes numb and my heart starts to race. 
  2. Starting from the legs, I shake and jerk. Keep in mind, back when this happened, I wasn’t able to even move my legs at all…
  3. While my physical body is numb, in pain, and screaming and moaning for help, my mind is numb. My mind is lost in a sea of nothing until I wake up from my trance of pain. 
  4. Paralysis. While the seizure itself is over, my legs decide to just give up. I’m completely unable to move my legs. When I first started having these seizures, I would only be paralyzed for about 10 minutes. Until one day, after 5 hours I was still paralyzed. After being rushed to the ER and a 3 night/4 day hospital stay, I was left paralyzed for nearly 4 months. (With in those 4 months, I would have seizures very often)

The pain that I would have left over would leave me damaged. Looking back to it, I can almost feel the pain again and I’m beginning to cry. Just thinking about it makes me feel sick. 

Migraines 

My migraine situation was (and still is) awful. I would get migraines almost 5 times a day, this has also calmed down a ton. 

Taken at 1am, when I was finally admitted to the hospital after the people in the ER gave up and admitted me. They put a security band on me so I couldn’t “run away”. Keep in mind I couldn’t walk. 

I remember, when I went to school, I would sit in class and get a migraine just from looking at my notes and then up at the board. 

To releive my migraines, I have to sit in a dark room for up to 2 hours. 

“Sarabeth, stop looking like you’re in so much pain! It’s annoying!!”

 -My thoughtful sister 🙂 

Insomnia 

My insomnia started back in 2013/2014. It got to the point where I would find myself mixing Advil and Tylonel PM to get at most 4 hours of sleep. Since then, I’ve built up a tolerance to both of them. So now I take actual sleeping medicine (thank you LLMD) 

Sometimes, I’m grateful for my insomnia; I do my best work at 2,3,4am! Other times, all I want is a good 7-9 hour sleep like a normal person. 

But then again- who said I was normal?

Chronic Pain

This also started in 2014 and my does my body surprises me with? That’s right! Chronic Pain!! Whoohooo!!!!!!

When I went to school, I would cry all the time. I would cry in the bathrooms, in the nurses office, after school, before school, all because I was in awful pain. I would have to come in late and leave early most days due to how bad my pain was. 

Eventually, it got to the point where I could say “I went to school two days this week!!” Or I would have my friends ask me if I were going to be coming into school that day.

 I had teachers complain to me that I was never in school. Mainly my last block teacher. I almost never made it to the end of the day. I was in her class probably once a week. After a while, I just gave up. I stopped caring. I stopped caring about getting to class or finishing a day of school because I knew it wasn’t going to happen.

I was pulled out of school in the middle October. I’m proud to say I will never be going back to that school. Instead, I’ll be doing school at my own pace through a very alternative online homeschool program. No teachers yelling at me to finish. No one to yell at me when I’m not in class. Thank god. 

Brain fog 

Brain fog is not a medically recognized term but is a commonly used phrase that sums up feelings of confusion, forgetfulness, and lack of focus and mental clarity.

I still battle Brain fog today. It’s almost like dementia, but not. 

I will completely forget what I’m doing or where I’m going. This happens a lot while driving. I will ask myself (or whoever is in the car with me) “Who are we getting?” “Where are we going?” “Why are we going here” and more. And I’M the one driving…Safe, right?

Back when I first started my IV meds, my brain fog was terrible. I would forget my name, what day it was, where I was, how I got to a place, etc. 

Luckily, my Friends were/are always right there to help me when I forget. 

Because of Brain fog, I have a very hard time reading. I used to read all the time, now I struggle to read a book. 

Example: I’ve been reading this one book for about 3 months and I *think* I’m on chapter 3? I will read a sentence, forget it, and start it over. [repeat that now about 15 times] 

That’s a freaking chapter a month. 

Eating

Thanks to Lyme, eating has been a huge struggle of mine. 

A few months ago, I wasn’t able to digest food at all. I would eat something and throw it up not even 5 minutes later. It got to the point where I was only able to have a pediasure and *sometimes* a jello a day. I lost so much weight. 

This was taken close to the end of September- about a week before I stopped walking. I was about 100 pounds. 

I went through tons of testing. My GI thought I had Gastroparesis. So I went to the hospital and had to take a “Gastric Emptying Study”. I basically ate radioactive eggs and they watched it go through my stomach and all. It turned out clear and fine. So Gastroparesis was ruled out, but I still couldn’t eat! 

I still battle with it. I’m able to keep food down now, but only with the help of Zofran. I normally get 1 good, legit meal a day. I no longer feel hungry, it’s very rare if I do. Because of that month or so when I just honestly couldn’t eat, I got used to not feeling hungry. I now eat because I know my body needs the food- not because I’m hungry. 

If I eat gluten my stomach feels like it’s being ripped to shreds. 

If I eat dairy my stomach will just straight up kill me. 

I’ve just gotten used to it. 

Breathing

Although, this has been a confusing topic since 2012, I’m not always the best at breathing. 

I’ve had every test under the sun and I’ve tried every inhaler and pill to help, but nothing works. 

Sometimes my lungs just give up on me and stop working, and the only thing that helps is Oxygen. 

It’s really just a big mess. Actually- the last time I was in the hospital was because I stopped breathing in the middle of a show. 


They basically just keep me in the hospital until my oxygen level gets back to 100% and my Heart Rate gets to at least 110bpm. 

Speaking of Heart Rate…

Heart

My heart kinda sucks. 

My heart beats “inappropriately fast” according to my cardiologist. 

Along with that, I faint sometimes which is always a fun surprise in my day. 

I can’t sit up/stand up with out my Heart rate going waaaaaaay to high. 

I get super dizzy really easily. 

What did we do for this, you ask? Why more tests, of course!!

I had a tilt table test and a scan of my heart- everything turned out clean and fine. Only a little leakage in my heart (?) but apparently it’s okay??
I also had to wear this stylish heart monitor, which I named Francis. 

 I also get the joy of experiencing heart palpitations…which also sucks. Shocker, I know. 

Arthritis 

I have really bad arthritis in my fingers and knees. It gets really bad on cold days, but I deal with it everyday either way. 

Going up stairs is a daily battle I face. 

I used to crawl up the stairs in tears. 

Now, I walk up the stairs with a smile. 

I wish I didn’t have to think twice about bending down though, my knees are just awful. 

Bikram yoga has helped me so much with my knee pain. 

#ThankYouBikram

Now, I just picked a few of my worst symptoms. Sadly, there are many more. 
I still battle a lot of my main symptoms everyday. Since I started walking, I get the same old “but you don’t look sick” and honestly, what does suck supposed to look like? 


This is what someone fighting a chronic illness looks like. 

Mine just now happens to be an invisible illness. Before, when it was obvious, I was treated like I was sick. Everyone treated me like I was so gentle and sick. 

Now? (Almost) Everyone treats me like I’m some teenager complaining. No, I don’t want to be treated like I’m sick, but I also don’t want to be treated like a lazy teenager. 

Certain symptoms are worse than others, but I get through it. Everyday. No matter what. 

https://bikramyoganyc.com

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

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?

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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

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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/

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The joys of an IV Glutathione Infusion…

Glutathione is a powerful anti-oxidant that can be used to counteract toxic free radicals. It is a major detoxifier and as well as a huge treatment for many different diseases, such as Chronic fatigue, autoimmune disorders, nonalcoholic fatty liver disease, environmental sensitivities, autism, and more.

Let me make this easier to understand; You know how in comic books there’s always a superhero and the villain? Yeah, Glutathione is sort if the underdog superhero . It neutralizes free radicals, enhances the immune system and detoxifies the liver!

How could you not want this luxury?

I went for my first IV Glutathione infusion today and boy, was it wonderful.

It was originally meant to be as an IV push for 15 minutes, but I couldn’t stand the awkwardness of my nurse staring at me while pushing it into my body. So, we turned it into a hanging IV bag!

 

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Just a casual IV bag, with my nurse in the background…

This only took about 15-20 minutes to fully finish. At first, I felt tired and dizzy. About an hour after, I got a huge sudden bust of energy and I was wide awake.

I was ready to run a marathon! Or maybe even walk a little bit

Before going, I didn’t have high hopes for this to work. I figured I might as well try, right? Well, I’m so glad I did! I haven’t felt this good in years.

I would highly recommend IV Glutathione Infusions to anyone dealing with pain, fatigue, or just any chronic illness…

All I can say now is…I can’t wait until my next infusion!!

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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?