Chronic Pain vs. Going Out

Yesterday I woke up in awful pain. 

We’re talking 12/10 type of pain here. 

Even after taking Advil, along with my Gabapentin, I was still in awful pain. I sucked it up and took a Naproxen. 

I never take Naproxen. 

Around the time I took the Naproxen, it was time to take my second round of Gabapentin. 

Let me just tell you, do not mix those two together. 

Yes, I wasn’t in that much pain anymore. But boy did I feel crazy. I felt as if the world was spinning and couldn’t stop it. 

So please, don’t mix Gabapentin and Naproxen. 

Later that day, my friend came to pick me up- my pain came back. 

God. I hate my pain. 

But I smiled and we went back to her house. 

Around 6:00 pm I had to take my THIRD dose of Gabapentin (which always takes a little while to kick in) and we left to go see a show. 

Boy, I haven’t sat still that long in ages. 

Midway through the show my medicine kicked in, and was I an emotional mess or what!?

But I held everything in and I was ready to leave. 

Although after walking up four stairs, I was ready to break. The pain started caving in on me and I had to hold back the tears as I looked at my best friend with an ‘I’m okay, I got this’ look on my face. 

I had finally reached the top and people were ready to talk to me with smiles on their faces. 

A friend of mine talked about how she was so proud of how far I’ve come and that I’m even gonna be in an upcoming musical. 

At this point, I saw another friend standing next to someone, so we went over to talk. After finding out she ALSO has Lyme Disease & Co., we started comparing medicines and doctors and everything. 

But when she stated that she recently went into a relapse, I burst into tears. I couldn’t help it. 

I began to explain to her how I understand her pain and how sorry I felt. I went on about how I knew how hard it is to even get out of bed in the morning. 

I have never met anyone else, in person, with the same problems as me. 

It was very eye opening. 

This just showed me how common it is to run into someone with LD. 

This showed me how much of a problem it’s becoming.

(Also, I’m an emotional reck) 

 
 Over all, I ended up having a fun night with my friends and my pain went away. I think crying it out helped a ton. 

Just remember, know your limits of your pain. You know your body more than anyone else. If your body says no, you say no. 

A note to my close friends…

A note to my close friends…

The first time we met, I thought I was going down a spiral of nothing. I thought all was lost. I had just lost some friends, and saw the dark side of a few, who were once very close.

Then you all came. 

No, you didn’t all come at once. You all came at the perfect time. When each and every one of you was needed most.

You’d visit me in the hospital, with goodies hand-picked with joy.

You’d understand my needs, no matter where, when, or how.

From a simple sleepover every weekend…

…to all of us together.

Even from 400 miles away…

…or right here at home,

 

I know you’ll all be here for me, for when I need it most. I am more than grateful for the relationships I have made with every single one of you. You all, are a big reason of why I am so positive. You keep me optimistic and hopeful, and that’s all I ever needed.

P.s. I know this is lame, but I love you guys.

Bowling vs. Forearm Crutches

People take a lot of things for granted. Something as simple as bowling even. When it comes to me, nothing is simple.

All I wanted to do was simply go bowling with my sister and our friends for her 20th birthday. Was that too much to ask?

                       *not my sister

It began as a great night, having a lot of fun bowling and all. But as I watched everyone, I began to think. Why do I have to use this thing? This thing meant for toddlers.

Sure, I looked like I was laughing it off. But everytime I pushed the ball off the thing, I felt like shit.

After two rounds with the thing, I began to question what it’d be like to bowl like ‘normal’ person. You know better than that, Sarabeth. So I did it. I picked up the stupid yellow, 6 pound, ball. Inching my way toward the lane as my friends watched me struggle. I didn’t want help. I didn’t think I needed help.

God, why am I so stubborn. 

Once I got up to the lane, I was ready to break into tears. I felt like my body was punishing me. I didn’t think it was fair that they [my friends] could grab the ball, run up, and swing.

But I didn’t.

I didn’t cry. I didn’t show that I was in pain, mentually and physically.

I stayed quiet. This is my sister’s birthday, for godsake! I didn’t want to make a scene. I had just got out of the ER, I’ve had enough of the attention. It was her night.

I had no problem with sitting in the corner the rest of the night.

When my sister came to me asking if I was “okay”…I smiled, lied, and said yes.

This is all really my fault, I shouldn’t have tried it. I just wanted a taste of normality. I wanted to feel normal and it backfired. Hard.

Moral of the story?

You’re on forearm crutches to help you. Whether you are learning to walk again or not. Do what’s comfortable, don’t try to change yourself to fit in with what’s going on around you. You’ll feel a lot better in the end.

Happy 20th birthday, Sophia.

Family, friends, life.

“All parents set out with expectations, hopes and dreams for their child. When a child is diagnosed with a health problem, these aspirations are altered. While one parent is hoping to see their child graduate from university, another is praying that they can live pain free”
― Sharon Dempsey

This is something I think about a lot; how my mother must feel. I imagine it must have been hard at first, watching her daughter slowly whisp away, into the depths of an illness.

I imagine she must have felt some guilt for me being sick.

Sometimes, I picture her sitting up late at night, drowning in her thoughts. Thoughts of worry and wonder. Thoughts of hope for my future. Maybe even thoughts of fear.

I know I do.

I would be up at the most perfect time of the day, a little before the sun wakes up, and just think.

I would think about what would have happened to me if we hadn’t caught this sooner, or if I hadn’t gotten my treatment fast enough. 

I like to think about what it’ll be like when I go back to school. Fully emerged in the stares and whispers of some meaningless high school.  I can feel it already, their eyes on me as I walk in to school, that early April morning. Ignoring them as much as possible.

Hopes? Oh yes, I have many hopes.

I hope to graduate high school, on time, with my friends.

I hope to continue on to Med School and become a pediatric nurse. Where I’ll be helping children just like I once was.

I hope my family forgives me for making them worry about me for such a long time.

I hope my friends let me have a “redo” on my teenage-hood, that I lost a long time ago.

I hope to never have to say to my future child, “Mommy’s too sick to play right now”.

I don’t mind faking my smile. I really don’t mind that I pretend I’m not in pain. Because one day, I won’t have to fake a smile or pretend I’m in pain. That smile will be real. That pain will be gone.

This will all just be a distant memory of what was.

The not so casual, under the radar, ER visit…

Imagine this: It’s 5:00 am. You wake up three hours before your alarm and you’re in dying pain. But- the pain is only in one spot, your stomach. Your first response is to sit up, hunch over, and cry. But you can’t- That would hurt way too much. So what do you do?

You let the pain take over. You let the pain over come your body and you cry it out.

After about two hours of crying, your body lets loose. Almost like your body is saying, “Okay, I’m done.”

It’s now 7:00 am and you’re wide awake. So what do you do? Google, of course! Google all the reasons why you could been having a random onset of stomach pain.

Type in your symptoms:

• Stomach pain, localized to lower right quadrant
• Nausea
• Low-grade fever
• No appetite
• can’t lay still without crying

Once you’ve found something that makes sense, you ask your home nurse.

By now it’s 9:15 am and it has yet to calm down. She agrees with you- appendix.

Well after a few hours and a few doctor calls later…this is you:

Actually- It’s me. And this is my not so causal, under the radar, ER visit…

I ended up in the ER around 3:00 pm, in severe pain, thinking it was my appendix. It only makes sense, right? Wrong.

My doctor told me a whole list of what it could be, from the appendix to gas.

After she explained all the fun possibilities of my mysterious pain, she ordered an ultrasound. Nothing new, I’ve had my gall bladder out before…I’m an ultrasound pro by now.

Let me just tell you, this was no normal ultrasound. This was a “Hold your breath and try not to scream” type of ultrasound.

On the inside, I was screaming and crying. On the outside, I looked a little something like this:

If you really look deep into my eyes, you could probably tell I was tired and done being in pain. But under that mask, was a smile.

Once the dreadful ultrasound was finished, all my nurse said was, “Well, your right ovary looks..um..different from your left ovary.”

Nothing more, nothing less.

All I could do then, was wait…and wait, and wait.

Finally, after what seemed like forever, my doctor came in and explained everything to us. It wasn’t my appendix, but my ovaries. My right ovary went into over-drive and started producing wayyyyy too many eggs. Which left me in tons of pain. (How does this happen? No idea.)

{Fun Fact: This also means, if I were to get pregnant, I would have a higher chance of having triplets or more.}

So thankfully, I’m okay and got to go home. But, today was a huge scare and not fun at all.

Moral of the story?

Don’t ignore your pain. If you feel something different or out of the ordinary, seek medical attention. It’s better to be safe, than sorry.

Access Day!

My second favorite day of the week, Access Day! (De-access day being my favorite)

For those of you who don’t know, I have a Power Port implanted on the left side of my chest! I have it for antibiotics that I take twice a day via IV. This little thing in my chest basically saved my life. Without it, I’m honestly not sure what stage of my illness I’d be in…

But! If you refer to my last post “De-accessing your needle”, you’ll see how I did a walk through of pulling out my needle.

This one will be about putting it back in.

Here goes nothing:

1. Put on your damn mask! 

I can’t even count how many times I have said this. WEAR YOUR MASK. Wear it when you’re de-accessing. Wear it when you access. Wear it when you feel icky. Wear it whenever you can. Trust me, it’s for your own safety against infection and illness.

2. EMLA cream 

Let’s be serious here, having your needle access HURTS. Like, really bad. Before I used EMLA cream, I would scream and cry in pain. Please, do yourself a favor and put this on an hour before you’re accessed. You’ll thank me later.

3. GLOVES

Just like the mask, please always wear sterile gloves!!! Even after your area has been cleaned, you need those special little gloves. Honestly, they’re not that hard to find.

4. Breathe

You’re about to get stuck. Seriously, count down from 3 and breathe. Close your eyes even! Anything that helps you stay calm and still for the 3 seconds it take your nurse to stick you.

5. Here it comes!

Once it’s half way there, you can relax! Your nurse has everything under control and you have nothing to worry about.

6. That was easier than you thought, huh?

You’re needle is in! Before you have you biopatch and tegaderm placed, be sure to flush and check for a blood return. If it hurts, PLEASE TELL YOUR NURSE.

Once the needle is in, it should not hurt.

You did it! You made it through access day!

You’re such a rockstar!

De-accessing your needle

Today is the day! Your favorite day of the week! De-access day! Finally, after having that sucker in your chest for a whole week, you get to take it out and be FREE!!

If you’re super talented and learned how to de-access yourself, congratulations! I love the feeling of pulling out my own needle…what a rush!

In case you don’t know how to de-access yourself, no fear! I am here!

Here’s some simple steps to De-accessing your needle:

1. Sterilize everything. 

 

I would really suggest in getting sterile, individually wrapped surgical gloves. Also, always keep safe from germs! Wear a surgical mask!! You will be looking and breathing all over that needle. It would be a shame if it got infected because you were breathing all over it…

2. Take off bandaging. 

Once off, it should look a little something like this. (Notice the gloves) By this time, your mask should be on and you should begin gaining the confidence to pull out your needle.It took me 10 minutes to gain my confidence…

3. Bare down. 

Here’s where it gets tricky…

Squeeze both ends together, like your pinching your little brother, while baring down with the other hand. Have two fingers applying pressure on one side of the port. This makes it so it’s easier to pull it out.

4. 3…2…1..BREATHE OUT

Take a deep breath, and PULL! I like to breathe in, count down from three, and let it out on 1 and that’s when I pull it out. now is an appropriate time to curse.

You did it! You successfully de-accessed your self!

If you’re a loser, like me, you may post something like this [on every social media site…]

Congrats, you’re now officially your own nurse- Just kidding.

Please refer to my “Access Day” post about accessing your needle 🙂

Lyme Disease vs. The ER

I think I speak for everyone when I say this, going to the ER with Lyme Disease is hell.

Every single time I go to the ER, I get questioned. No, not your normal “How much do you weigh?” or “What’s bothering you?”. More like “Are you sure you have Lyme?” or even “That’s not a real thing.”

Yes, not all doctors ‘believe’ in Lyme Disease.

You caught us, we’ve been lying, Lyme Disease isn’t real. We’re just all crazy.

While in the ER, no matter what for, they always, always, always question my Lyme! I just wanna shout, LYME DISEASE IS REAL. GET OVER IT.

But, I can’t.

Instead, most of the time I tell them that’s not the reason I’m there and they, for the most part, back off. Until it’s time for my IV treatments and they refuse to let me have the medicine I need to survive.

Wow. Okay. Thanks ER, me too.

Here’s some tip on surviving the ER with Lyme:

1. Bring a phone charger: you’ll be reading off all your medications to your doctors and possibly showing them picture of your medications…to, y’know, prove they’re real.
2. Have your LLMD on speed dial: the ER doctors might need to talk to him/her a learn a thing or two…
3. Bring some PJ pants: everyone needs to be comfortable while being poked and pricked at, right? or just go completely in your matching dinosaur PJs, like me.
4. Be patient: sometimes, in a room full of doctors, you’re the smartest one. So please be patient. The doctors are learning to your needs, as well as you.

If you’re lucky…you may even get a sticker 😉

How to know you’re not a ‘Normal’ teenager

How to know you’re not a ‘Normal‘ teenager:

• The nurses at the hospital and/or ER know you by name
• You learn how pull out your own needle
• “Spoons”????
• You carry around a 15 pound medicine bag with you…
• …everywhere
• You have adorable face masks
• You have amazing friends who visit you

Not being a ‘Normal’ teenager is nothing to be ashamed of! Far from that even, it should be your reason to get out of the house. It means you’re special in so many ways.

Think about it like this: If one of my friends need something, Advil maybe?, you’re the first person they go to! You’re like this super doctor-nurse who didn’t need to go to medical school to get your degree!

You’re the super hero, fighting off evil with your special powers!

You’re the light to the darkness!

You’re the one, who’s going to go far in life.

Nope! Nothing normal about me 🙂