An Open Letter To My Body: living inside the confines of chronic illness

     Most days, you and I are okay. We have learned to work together. You have taught me patience, gratitude, and perspective. While we have progressed together, we have progressed!! I have figured out ways to help you. And as reluctant as I am to admit it, you've changed my life for the better. 

   
    But we make things hard for each other, too. Sometimes I ignore what you're telling me. I am reluctant to take my afternoon medication until my dog is about to burst a fetching aneurysm. I am unwilling to access my port for hydration until I'm so dehydrated it literally hurts to blink. I forget to be patient with you. 

But you are SO reluctant to work with me. If I forget two measly pills, I am struck with not only a dizzy spell for the rest of the afternoon, but it also becomes nearly impossible for me to function because I can't stay awake. If I forget to do one thing, do you really, absolutely, have to shut down? Until the night comes, that is, and I actually want to sleep. Silly me.

   

And then, if I decide I want to eat, heaven forbid, anything in my fridge, you get back at me by making me look six months pregnant. And I'm dang careful too. I don't eat garlic, or anything spicy because you don't like it. I don't eat gluten because you refuse to work if I do, and I don't eat dairy because you completely reject it. Is it really so necessary to be that picky? And don't forget those killer cramps and never ending nausea and indescribable pain.

So thanks for that.

      And as if that weren't enough....

...can I please finish a complete thought without you pulling this crap because I literally cannot even remember what I was going to say next but it was going to be really good thanks for doing that every time I have something awesome to say. Why does every thought I have have to be encompassed by a dense fog that I have to try to navigate through? Why does brain fog have to surround everything? We're lucky the people that love us are patient and willing to play charades...

   
      Along with that wonderful crap, can you really not figure out that there is absolutely no need for you to be in pain? Zilch. Nada. Goose egg. I have taken good care of you, I've been careful to stretch every day and take my medication and everything. So why on earth do I feel like I was run over by a train?
     
     Also, can't you please just follow the doctors orders and stay stitched together and not stretch back out, maybe stop dislocating every time I move, so that I can stop getting you cut open? And if none of that can you at least get the nutrients out of my food so that we don't start to feel worse than we already do?

     I mean... I expect you to do the sorts of "regular" things that all the other bodies do really well. You suck at those things. But... I'm pretty sure if those "regular" bodies were working under your conditions they'd be pretty screwed themselves. So I guess you're alright. We're alright. I love you. It doesn't mean I'm always going to like the way you do things. But We are in this together. You and me. Forever. I'm going to get mad at you. We are definitely going to not get along sometimes.
But that's okay.

We will grow together as teach each other and it is going to work out just fine. 

I forgive you for your faults, and I'm sorry for placing blame on you when it's not your fault.

Thanks for trying,
the girl living inside the confines of chronic illness. 

So... Who's Curioius Then???

Do you wonder what it feels like???

To be one of those sick kids, I mean. 

The ones who skip out on public outings because they're "too tired," the ones getting medical tests done on them while they should be taking tests in medical class? The ones who suddenly disappeared from your school class altogether, the kids that the rumors were about that they died or something? The ones fighting for a regular life... The ones who can go to every hospital in the valley and are known personally by over half the staff, but when they go back to school their old teachers don't even know who they are? Ever wonder what that's like?

Well It's kind of like....

But I guess that doesn't really explain things too perfectly. So Lucky for you, I'm one of those kids. So here's what it's like:

Imagine being completely, emotionally, physically, and mentally exhausted every. single. day. Imagine that it’s been almost three years since you had a regular amount of energy in a day, that for years it’s felt like you were driving on empty. Imagine knowing that that feeling will never change. Imagine feeling all the time like you haven't slept for a week and like your body is barely scraping by, trying to find and use the very last little bits of anything to keep you going.

Imagine that as your body uses up everything, it can’t even do that right. Imagine not being able to eat or even not eat without getting sicker. If you eat, it basically feels like someone stabbed you repetitively in the stomach, and if you're lucky that pain radiates to your chest. But if you don't eat, either the entire world is spinning around you while you stay still, or you're spinning faster and in the opposite direction. Also accompanied with hat dizziness is usually small blackouts throughout the day so...

It looks like this

And it basically feels like this. 

Pick your poison.

And it's the same with sleep- if you actually can get sleep, and you don't sleep enough or sleep too long, getting your body to even halfway function for the day is next to impossible. And no matter how much you sleep, you're always tired. Not just sleepy or worn out but tired to the very core. Like you just finished a three hour workout and you haven't slept for a month straight. And even that is a crappy explanation.

 Christine Miserandino Explains it perfectly in her article The Spoon Theory. Check that out.

On another note you shouldn't lounge on the couch too much because if you do, you're body is going to mistake that for meaning that you've got nothing to do and any energy you have for the day is gone. Your body understands stop, and go. There is no yellow light, sorry.

You'd think that the opposite, then, would be okay, but nope. Don't stand up for too long because your heart is just gonna sit there spazzing out trying to get blood through your system and it sucks at that. That's why your hands and feet are always freezing and that's why you're more often that not crazy dizzy. You'll get crazy palpitations that legitimately feel like your heart is coming through your throat.

The coolest part is some days you'll be sitting in class and you really are paying attention and trying to learn but suddenly your body demands more. You can tell you're about to pass out. your breathing is shallow and the world around you feels cold. Everything you look at is blurry and around the edges of your vision creeping in, everything is grayish, warning you that a blackout is coming. It feels like an entire ocean is sloshing around between your ears. Your eyes roll into the back of your head and it's just about the hardest thing ever to keep your head upright (and because of this, in this moment you basically look like a bobble head there in the second row of your class of 75). And then, you're just stuck there. Because as close as you get to passing out, your body won't do it. Someone just might notice, and they maybe will say something along the lines of,

"dude are you okay?..." But really what can they do because what the heck can you even do? You can't even figure out a way to cope with the hundred things going wrong right now so you just mutter "yeah I'm fine....."

Just hoping you don't look like this to everyone behind you.

and try to shake it off

Literally for some reason your reaction is to shake your head like you're trying to get that nonexistent ocean out or something.    

The very most basic things throw you for a loop. And as your body is trying to use up everything, and it’s doing it all wrong, you have to find any way to replenish that, or find some way to get the specific things that your body royally screws up into your system so that you don’t completely crash and end up stranded without any way to get anywhere. 

Imagine countless surgeries- you can't count them because you never know when the count will end. Hand fulls of pills at least three times a day-- more if you want to keep the edge off of the worst pain you’ve ever felt and then some. And even if you can take the edge off, it never completely goes away, even on the strongest pain medication your doctors will give you. Imagine feeling every day like you literally got hit by a bus. Or being unable to sit more than 10 minutes in the same position, and if you do,

 you better hope that you're comfortable because if you want to move you're going to feel needles digging into whatever joint you just moved (and not that whole pins and needles feeling. It literally feels like a cortisone shot into a tight capsule. or like someone has your bone in their hand and they're just grinding it all wrong in the joint or something). 

me trying to explain//
            Doctors trying to understand

And then there's symptoms that you can’t even figure out how to explain. Imagine that so much is wrong with you that even the specialists don’t know how to untangle it all. Imagine your whole life feeling like a plate of spaghetti: a big pile of awesomeness but impossibly tangled.

Imagine all this at seventeen. at eighteen. at nineteen.

Imagine no one around you ever really understands. Of course small aspects they might get. Like people might know well what it feels like to have a migraine, or to get so dizzy you black out, and everyone has had a stomach ache, everyone gets nauseated from time to time, people know what it feels like to be out of breathe, or for your bones to ache and muscles to scream. But not one person on earth can understand exactly how you feel. How many people feel all of this at the same time and more? How many of those people know what that all feels like in your body? Nobody.

 And hey. That’s okay, you know? Until they start minimizing your pain, judging you for missing important events or being too tired to walk the mile to their apartment, or glaring at you for parking in handicapped spots. And then there comes a point with so many just refuse to understand.

But this is my life, in a nutshell. These all are things I experience regularly. And sometimes it kind of sucks. But that doesn't mean I don't love my life, or that I can't go out and do anything fun, or that I don't love my friends. Sometimes I can ignore it all, mentally pretending that I'm "normal," whatever that feels like. 

I just don't love that nobody seems to want to understand. 

It's okay to ask questions 

when you don't understand, 

seriously.

So... Any Questions??.....

Quality of Life VS. Life of Quality

Quality of Life is defined (by google) as:
"the standard of health, comfort, and happiness experienced by an individual or group."

According to Wikipedia, "Researchers at the University of Toronto's Quality of Life Research Unit define quality of life as 'The degree to which a person enjoys the important possibilities of his or her life' (UofT). Their Quality of Life Model is based on the categories 'being', 'belonging', and 'becoming', respectively who one is, how one is not connected to one's environment, and whether one achieves one's personal goals, hopes, and aspirations"

According to professionals, my quality of life with Postural Orthostatic Tachycardia Syndrome (POTS) is comparable to that of a patient with congetive heart failure, or that of someone on dialysis for kidney failure. Not to mention the other handful I've got as well.
But like.. okay?...

What does that even actually mean? Who decided what the standard of health was to have "quality" in life?
Because Hello! I'm chronically ill and as much as it sucks sometimes, it's life! 
What's the difference between having a good quality of life and a good life of quality?
And why is there a difference?

As I looked into it, I found that quality of life is often compared to or along with happiness in a person's life.

On that note; people often ask me, "How are you so happy... considering all you go through?"

So I just want to take a minute to answer that in a roundabout way.
[As a preface I want to remind you that NOBODY is always perfectly happy.]

Take a second and think, first, are you happy? Assuming the answer is yes (I'll get to my answer to no later.): second, what is the hardest thing you've ever gone through in your life? How did it effect you? If it was so difficult, why are you still happy? I doubt it's because that hard thing is over. Because whether it is or isn't, you still face hard things. 
If the answer to my first question was no, why?? What is it in your life that is so awful that it's preventing you from the basic feeling of happiness? If it's because things altogether just suck, why not be happy anyway?
And finally, when was the last time you counted your blessings, and considered what has improved in your life over the past few years, instead of focusing on what seems like it's not as good as it used to be?

I firmly believe that happiness is a choice. You can choose to pursue happiness every day. And no, that's not going to just stop your depression in it's tracks or make all your troubles stop troubling you. But I swear from experience, deciding to pursue happiness will change things. 

When you stop allowing the total crap to make you feel like total crap, change happens. 

I'm sick and most days things suck and getting out of bed and to class most days feels like it has about the same difficulty level as becoming a brain surgeon (aka really flipping hard). Every once in a while I'm stuck in my apartment leashed to my IV. I can't go out and play sports with my friends, or eat whatever I want. Sometimes I won't wash my hair for 10 days straight because I'm really that tired. I have to be careful doing pretty much anything because even getting off the couch wrong could be the breaking point for some part of my body and could result in surgery (I learned that part the hard way). 


But none of this means that happiness is out of my reach!!!

Just because I have limits doesn't mean that I'm limited. I was taught growing up to follow my dreams and that I have the capability to exceed limits. Surprise surprise, getting sick hasn't changed that. I can follow my dreams and I can exceed my limits, and I can flipping succeed. And as I've grown into young adulthood, I've learned to listen to my body and my heart and my head all at the same time (or at least try to). And that means that sometimes I have to take a break, whether it's from school or homework or walking or talking or just a break from life altogether. 

I find happiness in the simple fact that I'm alive, honestly. You'd think that with my "quality of life" being at an all time low or something that I would pretty much hate life.
But actually, I love it more than I may ever have the sixteen years I spent living a healthy "normal" life previous to getting sick. I have more drive and more desire and more will than I ever had before. And maybe that's because I appreciate the little things more now that the big things aren't such a big deal to me. Because now, the sort of rush I seek more often is that of the fresh spring air blowing through my hair on a Sunday morning, looking up and seeing the sky lit up with stars, or laughing so hard I'm getting cramps in my stomach and tears are streaming down my face. Though occasionally I do go out and do things that very much increase my likelihood of literally dying if something goes wrong (sledding, ice skating, long boarding... yes. I could die, actually, if I fell wrong and hit my head that likelihood is higher for me than others.), If I can breathe fresh air and I can laugh (even if it's at my own situation), I'm happy.

That's another thing. How are you supposed to enjoy life if you can't laugh at yourself once in a while? Here's a tip if you're struggling with it: recognize that irony is hilarious. I literally laughed until I cried today because the pizza guy asked us if we were spending our Saturday night in studying.  I laugh when people tell me that it's odd that I have this or that because I'm so young, or that it's unlikely that I have _____ because it's so rare. I'm sorry but every one of those is 100 times funnier than any joke I've ever heard and I literally have laughed to the point of tears about them.
The point though, find the humor in your life.


Honestly. Really. I promise. Your life rocks. even if there are parts of it that just suck. 
Go walk outside and take a deep breath. look around a bit, take in the smell of the grass and the sound of the birds singing for the beauty of the day. Watch the sun set, then stay up all night to watch it rise. 
Curl up in bed with your snuggie and your favorite book, or go binge watch your favorite TV show. Take a walk with your friends. Write a letter. Write a crappy poem. Write in your journal. Go have a picnic. Make a blanket fort. Make blankets for newborn babies. Give sandwiches to homeless people. Hug the people you love, and tell them how much you love them. Dance like no one is watching and blast your music. 
Do things you enjoy, find new things to enjoy, and pursue happiness, for goodness sake! Ignore the total absolute crap surrounding you. Life is awesome, and you are getting through it. You are awesome. So recognize that and be happy.
No matter what your doctors or friends or parents or statistics are trying to tell you that you can't do, no matter what it feels like might be holding you back, limiting you, restricting you, etc. you can break free from it. You can defy odds. If you're the one setting those limits for yourself, and it's not benefiting you, stop. Don't let your fears, irrational or not, stop you from doing what you want. Maybe you'll get a few cuts and bruises, maybe you'll get a broken heart, maybe you'll end up in the hospital, but any of that could happen no matter what you're doing. So don't let anything stop you. And just maybe you'll find your happiness along the path of that broken road.

No matter what your "quality of life" might be according to anybody, Live a life of quality, and choose to find happiness. 
Now get out there. 

I'm loving every minute man.

So here I am.
I just made it through my first semester of college after being homebound my last two years of high school. I just made it through my first semester of college over 500 miles away. I just made it through my first Christmas season in two years outside of the hospital. I just made it through my 17th surgery. I just made it through the year. Heck, I just made it through the freaking day. I am making it through it all. 
I'd start at the beginning, but it goes a little further back than that.
I didn't grow up a 'sick kid.' I grew up doing gymnastics and cheerleading from the time I was two years old. I was competitive. And I loved every minute of it. I waited until my fifth orthopedic surgery before I decided to draw the line and give it up for my health and for my team. I don't give up easy. Why would I? Wounds heal and life goes on. Until things just kind of, change.
Less than a year later, in the beginning of my junior year, I just wasn't getting better. After surgery, I always just feel knocked on my butt. Tired, sore, and altogether just working my butt off to function period. I had a major surgery that September. And that feeling never went away. 
December 2, 2012 I was finally admitted to the hospital. They suspected I had viral meningitis. Spinal Tap (Happy Birthday!): Nothing. Brain scan: nothing. Bloods: nothing. Nothing. Anywhere. No results, no news. I was put on some heavy duty migraine medication and tested some more.

Just one of those basic sleeping tests.
 (Wires are annoying.)

After a week or so one of my doctors wanted to test my orthostatics (measure the changes in my heart rate and blood pressure from laying down to sitting to standing.) And I got my diagnosis. Postural Orthostatic Tachycardia Syndrome (POTS), an autonomic nervous system dysfunction. Basically, my body hates me and won't do anything right. When they let me out, not much changed. I spent the next six months in bed. Because for the most part, even though there was a name for it, none of my doctors knew what the heck was wrong with me. 

So we raised some money, a lot of money- neighbors got a whole new meaning to me- I got a flight paid for by Miracle Flights for Kids, and flew from Las Vegas, NV to Rochester, MN to spend a week at the Mayo Clinic. I saw so many doctors and met so many people the majority of it is a blur. But it was incredible, and life changing. My POTS diagnosis was confirmed with more in depth testing. I saw a geneticist and was diagnosed with Ehlers Danlos Syndrome type 3 (EDS), a collagen disorder. They also added on Fibromyalgia (a chronic pain syndrome), and chronic migrianes. And my handfulls of pills slowly increased. Since then I've also been diagnosed with gastropariesis (my stomach just sucks at digesting), and Chiari Malformation (in which brain tissue extends into your spinal canal).

In the past four years I've had eight orthopedic surgeries [Right shoulder repair; right and left knee repairs, repositionings, and hardware removals (4); Left thumb repairs (2)], four port-a-cath replacements/removals, Brain surgery [Chiari malformation decompression], and a right heart cath. Plus the not so out of the ordinary removal of my wisdom teeth. 
And we're finally figuring it out. IV fluids weekly, 13-20 pills daily, stretching, lots of drinking, lots of salt, limited diet, and a lot of figuring out how to best manage my time.
And no. It's not all figured out and no I'm not getting better. But this is my life and I'm along for whatever ride I'm put on. 

God is my support and I know that He knows better than I what I can handle. And I wouldn't change my situation at all if I had the chance. Through this journey I have learned things I never would have otherwise, I have met people that have changed my life, and I have learned how important it is to pay careful attention to myself. I have learned my limits and I have learned that I can break past those limits. I have learned what it is to care for someone and to be cared for. I have learned the meaning and importance of service. I have learned. I have been able to make a difference. And that's all I ever want in life.

I used to hate others telling me how strong I was. I only feel relatively strong like 40% of the time. I couldn't stand hearing What an inspiration I am. But I guess if I want to send any sort of message to the world, I'd want it to be an inspirational one. I used to hate being seen for my imperfections. But I know now that it's our imperfections that shape us for the best, if we let them. My weaknesses have become my strengths. And I am finding that strength regularly.
So hello. I'm 19 and I am chronically ill. And despite what some might figure, I'm okay with that. I'm not too young to be this sick. I'm not too young to know those big words. I'm not too young to have to teach my doctors things that might surprise them on their exams. I am not too young to have had more surgeries than my grandparents or too young to take twice as many medications. I am not too young. Illness never discriminates. 

I'm on a journey to better health (Thank you Cameron for that term). And ironically for me that means finding out how sick I really am. And it's a heck of a ride, but I love rollercoasters, so I'm alright living on one. It's a heck of a life. And I'm still loving every minute of it.