I am a Professional Patient

 

I attempt to turn my gritted teeth into a smile when someone asks me my least favorite question. " So what are you doing with your life?" 

I can tell you what I would like to be doing. I'd love to be in school, living on my own, dating like crazy, in the process of becoming a child life specialist, and living the life of an average 21 year old 

But my life is far from that.

My life is full of hospitals, medications, doctors appointments, crippling fatigue, excruciating pain, swollen body parts, a paralyzed GI tract and trying to play peace keeper a body that's broken out into a full blown civil war. 

When asked this question " what are you doing with your life?" 

I typically force a smile and say 

" Well, I'm still taking care of some things with my health.. college is ALOT OF money. And I kind of want to be able to show up when I start college." 

Or if I'm feeling really sassy along the lines of 

" o just "going through" a "personalize medical internship" Or 

"  well.. just trying not to die! So far I'm doing a really good Job!" 

But In all honesty for the past 3+ years. 

My health  has been my job.

Each and every day I fight a crazy, ( apparently almost impossible to diagnose) auto immune disease, that causes heart issues, lung issues, joint pain, swelling, and hypermobilty, GI Tract paralysis, and pure widespread bodily havoc.

( Not to mention an eye condition that has caused partial vision loss, and a talent for growing unwanted  tumors.)

Each day is honestly a struggle.

 

The thing I can count on every morning, is that I will wake up in pain. 

I know that my body is  betraying me. I know that it will never stop betraying me. 

I know that this disease whatever it may be, could likely kill me. 

And that I will most likely never be "healthy" 

Some days, those facts are an impossible pill to swallow. 

Some days I look in the mirror, and all I see is someone extremely broken.

Some days I feel utterly worthless. Like this illness has taken over my life. And there is nothing I can do to change that.

Some days, honestly all I feel is fear. 

But being a professional patient means, that I not only fight for my life, but for my quality of life.

I go to Drs appointments, 

endure thousands of test, 

Mountains of medications.

dozens of procedures, 

Millions of battles.

Hours in hospitals.

Bundles of stress.

Gallons of tears 

All in the hope, that one day my illness will be managed, and I'll be able to live as normal and hopefully as long of a life as someone with a chronic illness can.  

I fight each and every day to choose happiness,  To focus on the good in my medically challenged life , and not let the mountain of things that are  against me bring me down. 

And when I respond to that awful question " what are you doing with your life " and people nervously walk away. Or say something along the lines of 

 " well you need to stop sitting around and do something with your life" 

I wish I could show them how far I've come.

That they could see me when I weighed 110 pounds and had a feeding tube.

I wish they could sense everything I've learned, And how much I have grown during this crazy trial of health.

I wish they could see the strength I've gained from battles lost and won,  and the warrior I've become 

I wish they could know that my fight may hopefully get easier. But it will never be over. 

I hope that one day I will be able to go to school, become a child life specialist. And live that somewhat normal life I dream of. 

But for now I am a " professional patient"

 

 

The hours are: never ending 

( Some of the)

Requirements:

Must endure excruciating pain on a daily basis 

Must know that the ability to digest is optional 

Must know that swollen joints are mandatory 

Must learn how to administer dozens of medications

Must learn the ins and outs, of the medical insurance industry. 

Must learn that the ability to walk is optional 

Must learn: the meanings of advance medical terminology.

Must learn: how to fight and advocate for yourself, to speak up, even when you disagree with someone who has an extensive medical degree.  

Must be able to pull strength from nowhere. And be able to move forward despite of how broken you may feel 

Must endure hours upon hours of brutal medical testing, life saving surgeries, and medical procedures 

Hospital stays are mandatory 

Needle pokes, infusions, and medication side effects are an occupational hazzard. 

Job perks:

develop an overwhelming sense of gratitude for what most people take for granted . 

Develop an amazing amount of strength that you never thought you could posses 

payment is:  you get to live to see another day. 

Through my journey, I've learned that You don't fully appreciate life, until you have danced with death.

I would never choose to be a "professional patient" 

But what this illness has taught me, and what it will continue to teach me ls more valuable than Anything you could put on a  resume.

I'm determined to make the best out of my " personal medical internship". 

I'm determined to let this " Job" change me for the better 

If you are in a simmular Situation that I am. 

Never be ashamed of being a professional patient. 

 Don't let People convince you your "wasting your days" 

Fighting for your life is the most worthwhile battle you could ever partake in.

Your a warrior.  Remember that and smile on ❤️