here's the truth behind the facebook posts

My life was essentially perfect this past summer.

I’d spent the first three weeks doing everything I’d wanted to. I invested my time in three different camps that made my heart so happy, and I felt like I finally had my health under control.  After my third and final week serving as a camp volunteer, like any typical teenage girl, I went and got a coffee at a local coffee shop with my best friend.

Then everything changed.

After drinking about three-fourths of said coffee, I got the jitters. Mind you, about a month before this, I’d stopped drinking caffeine completely. So maybe my body just wasn’t used to the energy, but – and I know how ridiculous this will sound - my heart began to race and well, I freaked out. I got the panicky burning sensation, dizziness, the works.

But it didn’t stop.

I asked to be brought home, I waited hours for the “caffeine jitters” to pass, but they didn’t and honestly, that’s when this nightmare all began. The following weeks were filled with countless doctor’s appointments, three urgent care visits, and one emergency room visit, because the jitters just never went away.

During this time period, I essentially wasted away. My heartrate was incredibly fast all the time, I had shortness of breath, my heart often skipped beats, I was experiencing blood sugar crashes, I was so weak, and worst of all: I lost over fifteen pounds. At my worst, I weighed 100 pounds.

The Cardiologist gave me an all clear, my Rheumatologist saw nothing of concern from a Lupus aspect, and my Primary Care Physician honestly had no idea what to do with me. All of them insisted this was just a byproduct of my anxiety.

So with a diagnosis of hypoglycemia, pretty severe anxiety, and my new blood sugar monitor in hand, I headed back off to college an hour and a half away. I wish I could say things were just all rainbows, but they weren’t.

While the first few nights were met with some invasive anxiety, the real trouble came on the first day of classes. Upon entering the very first class on the very first day of this semester, my heart rate spiked to 140 and the panic ensued. Thus began a flurry of visits to the Health Center at my university, and visits to my Disability Advocate.

Over the course of the semester, I dropped from sixteen credit hours worth of classes to only ten. I only take two classes on campus, and I’ve stopped participating in various organizations that I care about.

To try to figure this out, and finally understand, I’ve been seeing an endocrinologist.  Though various tests came back relatively normal, my endocrinologist thought he knew the reason for all my problems: POTS.

So here I am, almost six months after all this began, a week into steroids meant to help my life become normal again.

But the truth is, I don’t even know what normal is anymore.

I’ve spent months living a real life nightmare.  

I have been incredibly vulnerable throughout this whole journey, but there are so many aspects of this journey that I’ve kept hidden. Not only is POTS a nightmare, but the anxiety that has grown over it is unforgiving.

I spent weeks unable to eat due to the fear that I was dying. I spent months monitoring my heart rate, watching for any spikes, anything irregular. I have been so obsessed with everything involving my body that I can hardly function.

Finding out it was POTS all along was ‘nice’, but this has become a prison. The damage is done; the Anxiety is so real.

I can’t go grocery shopping, I can’t hang out with friends, I have every hospital and urgent care mapped out everywhere I go, and to be so real right now: I can’t even shower without knowing someone is nearby.

What I’m living through right now is quite frankly, Hell on Earth. It is for me, and I’m making it the same way for those around me. Chronic Illness is so unforgiving, so selfish, and it doesn’t care who it drags down with it. I’ve not only successfully ruined my life, but also that of those who I care about the most. I cannot thank these people enough.

It has been the absolute worst six months of my entire being. I would give anything to just go back to normal, but like I said before, I don’t remember what normal is. Everyone around me tells me that I’m brave, that I’m courageous.

But I’m not.

I live every single day with such irrational fear that I’m dying. I am so afraid that I won’t ever go back to the way I was, that this will never end. There are more Doctor’s appointments on the horizon, more mountains to climb, and I just hate doing this. I hate dragging everyone down with me, I hate it. I’m terrified that I won’t live up to the person that I could’ve been before this all started. How can I help people if I can’t even help myself?

But I want to be able to do this. I want to beat this. I want to be someone everyone is proud of.  I want to be a world-changer. I want to do things MY way, NOT my illness’ way.  

So, with all that being said, here’s hoping. Here’s to pushing myself to new things, to doing things that make me afraid. Here’s to standing up to my Tachycardia, to my fear, to the irrational thoughts that plague my mind. Here’s to better and brighter days.

I know there is a lot of strength in admitting that you’re afraid. That acknowledging something like that is the first step to getting better. So here I am, admitting it.

I’m not brave, I’m not strong, and I am so, so afraid, but I am determined to get better, so I will.

I hope.

A Sailboat of Courage

It’s been almost two months since my lupus diagnosis.

That means I’ve had two months to process everything and to let it sink in. That is two months to finally let go of this grim diagnosis and to allow myself the chance to live, despite this minor setback. It’s been two months and I’ve had enough time to grieve and it’s time to move on.

But for some reason, I just couldn’t.

It was a lingering thought in the back of my mind. A small voice that whispered “lupus” over and over. I tried so desperately for weeks to try to move past it by googling information about it, and ended up finding stuff that upset me more. Things about lupus like: “one of the most mysterious, devastating, and cruelest diseases”, “contributing to cancer”, or my personal favorite, “the leading cause of stroke-related death in women.”

And for a while, I thought that I wasn’t able to move on because I was so afraid of dying. I’d spent so much time afraid that this would be my demise, that I had myself convinced that I was selfishly holding onto this diagnosis because I was afraid of dying and not being able to fully live my life. I’d become obsessed with the fact that I potentially could lose my chance of being someone normal.

Everyone just wants to be considered normal.

So in this constant state of self-pitying, I see a counselor to help with my grief.

And as I was waiting in the waiting room before my most recent appointment, a boy talked to me.

He was about my age, however, his mental age was much younger than what his body suggested. He saw my glasses and informed me that he needed some. We had a brief conversation while his mother tried to hurry him along, she seemed concerned that he was bothering me. She relaxed, however, when she saw that the conversation was mutual. He told me his name and asked for mine. He asked me never to forget him.

His mother smiled at me as he ended the conversation - a sign of appreciation from someone who has probably seen reactions not quite so welcoming of her son’s open nature. As they left, my spirit was so lifted. I was so incredibly happy.

So when I saw my counselor, we walked through things that made me happy.

I told her about the brief encounter with the boy in the waiting room.

We talked about a little boy with a small processing disorder who came into work asking for a t-shirt to be made with his favorite cartoon character on it. A little boy who I was so glad to help - who gladly talked me through the different colors for the shirt and gave me a lesson on how to spell his name. Someone who was glad to write out all the paperwork for me because he was proud that he could.

We talked about the Instagram accounts of children with down syndrome that I follow who brighten my day with their personalities and smiling faces. The little girls with big smiles and curled eyelashes who sing while standing on tables or suck their thumbs; those little faces that brighten my days simply with their smiles.

We talked at length about how excited I was to work with them. We talked about how I was incredibly thrilled to be given the chance to spend my life bettering theirs. That’s however, when I broke down. I expressed that I had a fear of dying before I could fulfill this dream.

And now I realize it wasn’t so much so merely a fear of dying, but instead a fear of dying before I could help others live.

I recalled how I’d become obsessed with the ideas of service projects. I’d become obsessed with finding ways to help others and to involve myself. I’d researched service groups at the University I’m attending. I’ve been trying to figure out different ways to help people even in the smallest of ways. I want - so badly - to make some kind of impact. So much so, that very recently, I’d become interested in the concept of creating crocheted stuffed animals to donate to children’s hospitals or fire stations. Small, small things.

Because now I realize that I’m afraid of never making the impact I’m convinced I’m meant to.

I’ve set my heart on working with special needs kids, traumatic brain injury victims, and survivors of abusive situations. I want to help others achieve the lives they are meant to, so badly. And with this lupus, I’m afraid that somehow, it’s going to stop me.

I don’t want fame. I don’t want to make tons of money. I just want to help an autistic child have a fluid conversation with his/her mother. I want to see a child survivor of abuse blossom out of their induced shell with a new family. I want to see a brain injury patient smile again or hold a followable conversation because of months of practice. I want the tears and hours of moving through obstacles to achieve a small goal that is monumental in the lives of those who truly matter. I want that insurmountable joy when something goes right.

I want to go to graduate school to work myself tirelessly to obtain a doctorate in PhD just to be able to work with those who need me most. I want the debt. I want the hours of studying, and the tests that seem impassable.

I want to be able to say that I reached my own goal of helping others get to theirs, but right now, I’m scared that lupus will be my own obstacle to get over.

The only thing is, when I think about that boy in the waiting room, or I read about children who’ve been given a second chance at life by a doctor who believed in them… I know that I need to be that advocate. I know that things are going to be tough, but something within me is begging me to persevere through it.

There is something within me that is begging me to know that I’m a future advocate for children who need a voice. One day, I’m going to be the fire that lights a path for a mother who has felt she needs to give up - I will be a vessel for success in children who’ve been anticipated to sink.

Lupus may be my anchor, but my sails are set with the wind, and I’m ready to cut the anchor loose.

Love, passion, and determination will get me where I’m going. There is no time for failure in the clock of my life.

A Tiny Change of Heart

All I saw were tiny feet.

A juxtaposed image of tiny feet on a too large hospital gurney being wheeled down the halls of the children’s emergency ward.

A hospital gurney being pushed by a nurse who looked fresh from college, and a young mother, clutching a colorful bookbag, belonging to the tiny feet covered by a blue baby blanket.

Tiny feet that belonged to a tiny human, an infant, a baby. A baby with a breathing tube in it’s nose. A tiny nose belonging to a tiny human with tiny feet that was in the emergency ward at the children’s hospital at midnight… just like I was.

I’d been at the ER for seven hours. I’d come for suspected appendicitis. I’d received an IV for severe dehydration, and on the way to receive my x-ray, I walked past those tiny feet.

Tiny feet that couldn’t walk yet. Tiny feet that belonged to a tiny nose, belonging to someone with tiny eyes that were closed - all too peaceful, almost normal - except for that image etched in my brain of those tiny feet hooked up to the IV like I was, hooked up to a breathing tube, receiving an artificial breath helping those tiny lungs succeed.

And a sob escaped my lips before I could control myself.

Here I was, seventeen, in the emergency room as a “high risk” patient because of my recently diagnosed lupus, my arthritis, my fibromyalgia, my celiac disease. I was sent directly to the children’s hospital in the off-chance that I was admitted, and I spent so often crying that evening, from self-pity and fear.

I’d walk down those halls on the way to my x-ray with my IV in hand, with so much despair.. but I’d passed those tiny feet.

Those tiny feet that are etched into my mind.

Tiny feet that are hooked up to tubes. Tiny feet that haven’t had a chance to live yet. Tiny feet with tiny dreams and a tiny heart that haven’t had the opportunity to thrive yet.

I’ve spent so much time pondering those tiny feet and wondering why that baby was hindered in that way, I’ve spent so much time wondering why that baby hasn’t been given the chance to live yet.

And it makes me think.

It makes me think about how lucky I am to be seventeen.

It makes me think about how lucky I am to be struggling with chronic illnesses in my joints.

It makes me think about how lucky I am to be breathing easy.

It makes me think about how lucky I am to be alive.

I have been struggling a lot lately about my lupus. It still is something that completely defeats me. And being in the ER on Saturday, gave me a scary preview of what could be in my lifetime. That realization hit me like a ton of bricks, and I moped as I walked along with my IV attached to me, and then I saw those tiny feet.

Those tiny feet that have given me a wake-up call. Those tiny feet that have reminded me that even when I’m sick, I’m not the sickest.

And by all means, I understand that I am not the healthiest. I know that I am not even close to being a normal teenager, but at the same time, I’m not the sickest. I’m not suffering the most. I am okay, I am really okay.

It’s difficult to put it into perspective. I cannot describe the amount of guilt that washed over me when I realized that I was in the emergency room for dehydration, while children were fighting for their lives in the same corridor. I felt so pathetic. I am so pathetic.

The x-ray technician had to run because there was a trauma case that came in, and I have been so guilty ever since. I am so wrong. I have wronged so many people in my pity party.

I know that I feel so sick, and I am so sick. Who I am, is a teenager with lupus and celiac disease. I am the “bless your heart” comment I received in the urgent care when listing off my diseases. I am this little girl who has an equivalent amount of struggles as someone twice my senior.

But what I am not?

Tiny feet with breathing tubes in it’s tiny nose.

I am so much luckier than I think I am. I am so much more blessed. I could be worse off. I need to stay true to who I am, and I need to stay strong. I need to stay brave. I am so alive, and I need to live like it’s real.

Because these big feet are made for walking. These big feet are made for living a good life that those tiny feet may never get the chance to.

And that’s how I need to live my life.

behind the scenes

You asked me if I’d recently gotten my wisdom teeth out.

It was innocent enough. It wasn’t malicious. It was just an observation. An observation that reminded me of an ugly facade I wear. A simple gesture that proved to me that my struggle was no longer invisible - that it was now obvious that I was different.

I had been living under this falsified reality  that the new medication wasn’t affecting me externally. I thanked my lucky stars that internally, I was receiving only positive results, but I guess all good things have to end somewhere, right?

I’d been sensitive to the changes. I’d noticed the ten pounds I gained, the acne, even the rounding of my face… but I just didn’t want to accept that they made me any less beautiful. My new normal included a speckled moon-like face. It’d taken me so long to finally accept that feeling normal meant giving up looking it.

And it hurt.

When I went prom dress shopping, I was embarrassed to learn that I’d moved up a dress size… Even two, in some dresses. I’d looked in the mirror in those beautiful ball gowns, and I just couldn’t see the beautiful girl that everyone else claimed to see. All I saw - all I see - is my struggle.

My “new normal” is bittersweet. My “new normal” is ugly. My “new normal” is unforgiving. My “new normal” is taking more medication than I ever have before. My “new normal” sucks.   

My “new normal” is grief-induced depression and insecurity that plagues me.

I want to feel normal. I want to look normal. I want to be normal.

I don’t want to be sick. I didn’t ask to be sick. I would never wish this on anyone else.

And I know, this is beyond petty, and I know I’ve begged others to never give up. To look their burden right in the face and claim victory, but it’s harder than I ever could’ve fathomed. It is so hard to give up everything that you were so proud of, all while trying to accept being diagnosed with something so ugly and unforgiving and defeating.

I am trying so hard to be brave but it is so difficult right now. My hair breaks so easily that I am afraid to put any heat to it. My face breaks out so badly that I’ve been prescribed antibiotics to clear it up. My feet turn purple when they get too cold. I can't be outside in the heat in the sun because I have to be afraid of flare ups. I can hardly sleep, and when I do, I have dreams about dying because I’m suppressing my fear when I’m awake.

It is so difficult to tell all of my doctors about this stupid diagnosis because everyone pities me. I now have the stupid disease that everyone thanked God I didn’t have. I have the disease I was told to feel lucky that I “didn’t have”. I have to go to a doctor for the rest of my life, every three months to receive blood work so that I can be sure I’m only feeling it in my bones and that it's not destroying my organs. I have a 9 o'clock bedtime right now because my body can’t handle the “new normal” energy it has.

I’m seventeen years old and I can’t even sleep in my own bedroom because I’m too scared of being alone. My “new normal”, my “sickness”, everything that I now am literally sucks. I don't want to be me.

I lied when I said I was brave. I am not strong. I am so weak right now and I am so afraid. I am more afraid than I’ve ever been before. Everyone has told me to move on, but I just can’t. I’m in the middle of a hurricane that is never-ending. I’m a ticking time bomb. 

I am so afraid to die. I want to be normal, I want to live a carefree life. I want to be normal.

This was me before I was diagnosed. I was so proud of everything I was. I loved my hair, my smile, my dimples, even sometimes the pale nature of my skin. I was proud to be that girl.

And now, I just wish I was as beautiful as before. 

Much love,

Jess 

when the going gets tough

I've been an "I could" kind of girl for as long as I can remember.

It started off when I was younger. My dreams were big, as they should've been. I could be popular. I could be beautiful. I could grow up and be famous. I could be this, I could be that. I wore out the phrase like an old sweater. It's always been familiar to me, and it flows off my tongue like the melody of a song.

And just like every child does, I grew up and my dreams became a little more realistic. My "I coulds" became obtainable, and I dreamed of achieving them.

I dreamed that someday, I could change the world. I could change people's lives. I could make a difference. 

But the days grew longer and my bones began to ache. At seventeen, I was worn out by noon and my fatigue overtook who I was. I was in pain constantly. I was so sick.

And the "I coulds" changed again.

It became: I could have fibromyalgia. I could have arthritis. I could have an undefined connective tissue disease. I could have lupus. 

And then, for the first time in my life, an "I could" became an "I do".

On Tuesday, January 26, I was diagnosed with lupus.

Lupus. A disease where the body's immune system attacks itself. A disease where the body attacks itself. This attack results in joint pain, a facial rash, memory trouble/loss, and exhaustion - along with many, many other complications.

And now, the "I coulds" sing a different tune than ever before.

I could lose my hair. I could lose my memory. I could have kidney problems. I could have heart complications. I could have trouble breathing. I could end up in the hospital. I could end up not being able to go to school. I could have to give up on my dreams.

And it sucks. It is the worst feeling in the world to be a ticking time bomb at the age of seventeen. I am at a loss.

I spend so much time crying and grieving about this stupid diagnosis because the biggest I could in my life involves the fact that I could die. 

Not every teenage girl has to go about her everyday life with the constant fear that the dormant disease inside her will take a drastic turn, not everyone has to live in fear of the silent disease that calls them home.

It hasn't fully hit me that I am living now with a rare, autoimmune illness that only five million people in the world have. It hasn't fully hit me that I may have to kiss some of my dreams for my future good-bye. It hasn't fully hit me that I am never going to be the same, and that my life is going to be different than I imagined it.

But what has hit me, is that I need to be brave. I need to live every moment with a joyous and thankful heart. I need to praise God for every moment where I feel completely normal. I need to rejoice in the moments where I am not feeling any pain.

And when I do feel pain? I need to pray. I need to push. I need to preserve.

Because I am lucky, in all the moments when I am not lucky, I still am. It could always be worse, and I am still so blessed to be where and who I am.

I'm writing this today because I want everyone to know that it's okay not to be okay. It's okay to be weak and to not feel like you can push through any longer.

But it's not okay to give up.

In everything that you do, you need to do your best to prevail. You need to do your best to push yourself to succeed and to be the very best that you can, always. Every day of your life, you need to let yourself be afraid. You need to let yourself be scared of what could be. Do crazy things. Do wild, adventurous things that scare you.

Just let yourself live.

At the age of seventeen years old, I have become a ticking time bomb.

I have Celiac Disease.
I have Fibromyalgia.
I have Arthritis.
I have Depression and Anxiety.
And now,
I have Lupus.

And right now, I am so scared.

But that is not going to stop me from turning every "I could" into "I am" and "I did".

Much love,

Jess

Strangers: A Poem

Strangers

When is a stranger

No longer considered a stranger?

From brief locked eyes

to urgent surprises

when our shoulders met

It’s difficult to place

when our relationship is replaced

with the title of acquaintance

For you and I

shared locked eyes

and your pupils dilated in size

battling with recognition

For if you were a stranger

you’re a thief to me

Because I no longer have that moment

when our eyes did meet

So because I gave you my time

And I made yours, mine

I think I consider you

a welcome acquaintance

Because truly,

I would never

give a stranger

the smile

I gave to you

jmp