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I Am Broken: Life With Chronic Illness

I have Juvenile Idiopathic Arthritis.
I am severely anemic.

I am broken.

And yeah, maybe I shouldn’t think that way about myself but it has taken me 10 long years to be able to say those words aloud to myself and I have fought to proclaim those three words. I believe I have earned the right to speak about my pain. I wish I could be optimistic all the time and actually believe the things that I and others tell me when we say:

“It’ll get easier”.

“It won’t always be this way”.

“Just hang in there!”

No.

I am broken. I have an incurable disease ravaging my body and it has only gotten worse since I have started college and on Monday, I could barely get out of bed and almost passed out just going up a flight of stairs.

A couple of days ago, my boyfriend broke up with me and as much as that hurts, it in no way compares to the pain and turmoil I have felt in not only these past two months but these past 10 years. And it wasn’t until I started talking about all of this with my…I guess as of now ex-boyfriend, that I realized I had been trying to live as though my arthritis wasn’t a problem and I have spent most of my life trying to minimize that pain because I didn’t want my parents and friends to worry.

But now, I am ready, to be honest about my struggles, to speak up when I am in pain or having a horrible day. Even though I have not been officially diagnosed, I also show all the signs of having depression. There have been many days when I have wanted to die because certainly death was better than living in constant pain. And when I am having a flare up, I never want to eat. I have to force food down my throat and force myself out of bed because the physical and mental anguish is too unbearable. For so long I have hated my body. Not out of insecurity or because I hate how I look, but because of all the pain it has caused me.

When I am not in pain, I feel mostly empty. I am learning to do things that add meaning to my life and to be around people who encourage me and are there for me as much as I try to be there for them and everything I have created here on the Internet has helped me get better, but when I flare-up, I have tunnel vision. My future feels like it’s been snatched out of my hands, never to be returned. A lot of the time I feel trapped within my own body. It controls how much I can do each day and how much I can participate in my own life and that is something that I am still learning to accept. I hate limitations and I try so hard to fix everything so I can avoid thinking about the one thing I can’t ever fix.

Me.

Chronic pain is so hard to describe. When my Celiac Disease was a lot worse and when I was still unaware that I was allergic to gluten , I would get an intense pain in my gut. The best way I could ever describe it was that it felt like someone had taken a rusty, dull blade and not only stabbed me in the gut but then continued to twist the blade around until I could hardly breathe or cope with the pain. I would just be out, shopping with my parents or playing at the park or at church and then it would hit me and I would have to pull away from whatever I was doing and go to the bathroom and would be there in the stall trying to remember how to breathe so I wouldn’t scream.

Arthritis isn’t a stabbing pain. It’s more like lack of movement. Everything aches but it’s a deep down kind of ache, the kind that never leaves. There is no getting better. There are just varying degrees of stiffness and sometimes sharp pain. It is like being hit by a bus and still being expected to get up and walk around like everything is fine. It is that feeling when something is really high up on a shelf and you keep on straining and pushing yourself to just reach, but you can’t quite make it. Then you jump and try to convince yourself that if you try again, you’ll be able to grab the thing off the shelf. But you can never grab that thing off the shelf, you can just look up at it and come to terms with the fact that your arm is not 3 inches longer and never will be.

I have finally reached a point in my life where I readily bring up my arthritis. I have spent most of my life hiding the fact that I have JIA because I didn’t want to face the questions and the pity. But most of all, I didn’t want to face the fact that I am broken.

People keep on telling me what an inspiration I am and how incredibly strong I am and I want to believe them but when I am laying in bed trying to find reasons to get up in the morning or on all those nights as a child when I cried myself to sleep, I don’t feel strong. I fell lonely and shattered beyond repair. I feel as though all the pain in the universe is condensed into my fragile body and all it would take is a word or a touch to fracture me irreparably. And maybe strength isn’t being invincible, but admitting that you are not.

Living with chronic pain is beyond difficult because you are not living. Mostly it is fighting to survive each and every day. It is like being thrown into a sword fight without a sword and you do what you can to fight back but mostly you are just trying not to die and to surrender to the opponents sword because it reaches a point where getting killed is easier and less painful than continuing to fight.

Living with a chronic illness is waiting rooms and endless questions from doctors. It is needles and examination rooms that smell like rubbing alcohol. It is sleepless nights and loneliness.  It is having people look at you but not seeing you. It is knowing that even if people are there for you, they won’t ever be able to understand what it is like to be you. They will never know how many times they have been lied to when you said “I am fine” instead of:

” I feel like dying and I am not sure if I can make it through today, much less the rest of my life but if I tell you all of this then I’ll have to face the sympathy in your eyes  and have you ask what you can do to make me feel better when there is nothing you can do and we both know it and if I tell you all of this, I will just go away feeling like a burden to everyone in my life and I can’t help but feel responsible for that. So don’t ask me if I am okay because I will never be okay. I am trying my best but I feel my life slipping away. So let me say “I am fine” because I am still fighting even though sometimes I can’t remember why”

I am also a self-saboteur. I have always struggled to take my medications because I didn’t want to face what is wrong with me. Before my relapse on March 9th, 2014, I had been eating gluten consistently for a year and that is why I fell out of remission and I have had active arthritis ever since that day and it is all my fault. I just wish I didn’t have arthritis. I hate it. And I hate myself for not taking better care of my body. I know I should have been doing more to get better and need to continue with taking my medication consistently and the only reason I have for not doing so all these years is that I didn’t want to accept that I have a problem. That I am broken.

I wish I had an optimistic conclusion to this but I don’t because the world is not a wish-granting factory. All I can say that if you are living with chronic illness, I understand what you are going through and I would love to hear your story. Be honest about your pain and don’t minimize it like I have been doing. I cannot remember what it is like to not be in pain but on my bad days, I can remember what it feels like to be alive, and all the people who are rooting for me and that is what keeps me going.

So yeah, I am broken.

But I am also strong.

 I Am Human

I walk with a spring in my step
So you can’t see me limp
I smile with tears in my eyes
But you can’t hear me crying
I am broken but

I

am

human

Someday I will rise up
Out of the pit I’ve been in
And I shall be magnificent
Are these just lies I tell myself?
To reach the other side
Where I live without

pain,

fear,

strife?

I am crumbling but

I am

being

rebuilt

Day by day I am broken but made whole
And one day, (or so I tell myself)
I will rise up above the skyline
And in ruins shall lay the old me
Right now I’m in construction
The old living with the new
Because it is human to break
It is human to crumble
It is human to build and rebuild
I am not invincible
I am afraid sometimes of my own voice
But the building blocks of the universe exist in my bones
I am human
And someday
(though it seems far off)
I will be made whole.

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30 Things I Love About Being Alive

It has been awhile since I have made a long list. Actually, I think the last one I wrote for this blog was “10 Weird Things About Me”. I just don’t want to forget all the beautiful reasons for living and all the things I love so here goes nothing!

  1. Sunday afternoons
  2. The way the night sky looks in winter/summer
  3. Sleeping at Last’ songs. All of them.
  4. late-night conversations
  5. laughing so hard that it hurts
  6. making art
  7. writing
  8. road trips
  9. good books
  10. understanding complex things
  11. exploring new places
  12. and rediscovering old ones
  13. the smell of autumn
  14. the warm sun on my face after a long winter
  15. libraries
  16. learning something new
  17. a cup of peppermint tea
  18. wild blackberries warmed by the sun
  19. being able to help people
  20. smiling without caring how crooked my smile is
  21. listening to stories
  22. thunderstorms
  23. finding beauty in the simple things
  24. and understanding the complex
  25. Chinese food
  26.  bad puns
  27. changing my mind
  28. movies that add meaning to my life
  29. comfortable silence
  30. making lists

 

What do like most about being alive?

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Complexity

I am not sure where to begin. I almost wish I could hook my mind up to my computer and download my thoughts but

a.) That would be really weird.

b.) It is also not possible.

c.)That’s also kinda gross.

d.) Thoughts and wave patterns are too complex to capture with technology

e.) I am not fully aware of my thoughts so it would come out as cgdffgidhehqiqgwt1w (or some other equivalent.)

I’m also not sure why I just used letters instead of numbers…..weird.

So I’ve been thinking a lot lately about complexity and how I wish I had better depth perception. Like how cool it would be if I could look at a person and understand the level of their complexity instead of telling myself things like “No one understands what it’s like to be me!” and other nonsense like that. It seems to be so simple to write people off as being 1D. Like what you see is what you get because if we look at someone and see their complexities, then we’d have to address those same complexities within ourselves and accept that we can’t sum up people in mere sentences and confine them to being simple beings incapable of understanding us.

I’m also marveling at the fact that we are able to think thoughts in an infinite and complex multi-dimensional mind and command our fingers to press on buttons with little symbols as a feeble attempt to momentarily grasp a fragment of this complexity to share with others. Is that cool or what?!

And I keep on frantically trying to grasp onto bits of my mind and soul by momentarily capturing bits and pressing them into poems and blog posts and late night 2 am conversations and still I have yet to swim deep enough into the depths of my soul. And maybe I do all of this because I want to matter. I want to be remembered. I want bits of my soul to fly away and land in the hearts of others and to have people read my words and say aloud to the universe that “Yes. I understand. For a fleeting moment, one soul managed to burrow a bit of herself in the lines of a poem and I understand myself better because of it. I and bits of the world are better just because this person exists.”

And I am frustrated because I am but one. A speck of dust caught up in a whirlwind, unaware of how fast I am spinning, and being flung from one life event to the next with no control or sense of direction. I feel like I am a universe living as a human being for a little while.

I wish I had the ability to time travel. To skip about time, just as one would skip a rock across a pond. I wouldn’t change anything. I would just watch. And listen. To perceive all the little bits of humanity before they disappear forever.

A few weeks ago, I visited an antique store in my town And pushed into a corner was an old photo album. There were pictures of a little boy, playing on the banks of a beach. They were taken in the early 1920s. Almost a hundred years ago. And as I picked up the album, some old letters fell out. They were dated  1920 and 1922. The first was a letter announcing the engagement of a young woman named Ruth. There was also a picture of her and she was lovely. She must have been only 19? 20? And then I opened the second letter…it was written by an older woman who had known Ruth as a girl. It was addressed to Ruth’s husband. It said:

(roughly paraphrasing this..)

Dear Willam,

“I am so sorry to hear about the passing of our dear Ruth and I must offer my condolences. Ruth was such a lively soul, full of grace and wisdom well beyond her years. She will surely be missed. It is truly unfortunate that she will not be able to pass on her legacy and wisdom to your son. It seems so unfair that someone so great must die so young but surely God has a plan…”

And it went on and on about how beautiful and precious was the life of Ruth and I couldn’t help but cry. Everyone who ever knew and loved her is long dead and the only person alive to remember her is me. The life of Ruth spanned the bridge of time to me, in 2016 who stood in a musty store shedding tears for the long dead.

I don’t want my life to be reduced to a couple of old pictures and letters from a time long forgotten. Ruth was a complex human being who was constrained by time and hers ran out so soon. Too soon. And I don’t know why these things happen and I felt and understood the anguish of Ruth’s husband and friend as they tried to grasp onto bits of their loved one before she disappeared forever into the unforgiving vortex of time. But now, I have immortalized her. Now, from  this day forward, the world will have evidence of her existence. She will not be forgotten and as long as there exists those to remember her.

So please do not let yourself be reduced to an old photo album and a couple of letters. You are a complex human being and it is okay if you have trouble grasping your complexity. Just don’t ignore the complexities of humanity as you try to fleetingly grasp onto yours. And please, remember Ruth. A lively soul like you who left this world far too soon. -Kate.

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Looking Forward: What’s Next

You know how in super hero movies, towards the end, there’s also some bit of voice over where the now recently realized hero talks about what’s next and how unexpected his heroes journey was? That’s how I feel right now. Like I’ve come to terms and processed everything that’s happened and now I’m dramatically gazing out unto a city from the top of a skyscraper, wondering what lovely and marvelous things are in my future. And I wish I could hit a pause button and capture who I am in this moment because it’s all about to change.

I remember one of the last times I felt this way. It was the summer between 9th and 10th grade and I was in Louisville, Kentucky, on the balcony of a hotel, gazing out at the horizon as the sun set over the Ohio River. And I was thinking about how everything was going to change and wondering who I’d be in the summer between 12th grade and college. Well, now I know. I’m a little more sure of myself. I know who I am, and now I have more courage to pursue what I want. I’m not sure where 14 year old me went, she slipped softly into the night as my voice grew stronger, braver than hers.

I swear a lifetime has passed since I was gazing out at that river and now it’s come full circle as I’m now left wondering how much I will change in the future. Lesson learned? There is no end to the marvelous things that can happen, if only we are open to change.

The future is uncertain, yes, but at least this time I have a clearer view of what I want and where I’m headed. In just a few days, (June 20th) I’ll be launching a second blog called ‘Philomath Maniac’ where I’ll be blogging about tips to study better, good sites to learn and learning resources/books I’ve enjoyed. I have pretty big plans for that blog so all of that is just the beginning. I also may have an opportunity to give a TED talk so that’s pretty exciting! I should be hearing back about that in a few days.

And last month, I came out with my first poetry book called “Like A Lotus”!
Basically life is a lot different from last year and it’s been hard to wrap my mind around it sometimes. I look forward to seeing what continues to happen and what the rest of this year holds. I’ll be moving to college on August 18th and it wasn’t until freshmen orientation last week that this fact fully sunk in. And the funny thing is, I’m not afraid anymore. I’m just excited. I kinda got to see my room. Well….more like I pressed my face up against the glass door and was able to see the door of my room… but it was still an exciting experience regardless!

As a teenager, naturally I’ve heard a lot about how being an adult sucks. But maybe like everything I’ve experienced thus far, it’s not completely good or bad…it’s just different, and all we can do is learn to be okay with that and learn to take life as it comes. And maybe the scariest thing about being an adult is the uncertainty, the lack of control in the parts of our life that we’re taught that we should have all figured out by 18. So truthfully, all I have are plans. I’m not sure what comes next. But I’m learning to be okay with that because life is life. It’s exciting, scary, and full of change. But to me, that’s what makes it so great.


 

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Looking Back (advice to high schoolers)

I’m not really one for looking back. Actually, if you were to ask some of my closest friends, they would probably say I never look back. I’m very future-oriented. I’m more than ready to put the past behind me and focus on college and all the many opportunities that will bring into my life. I don’t believe in dwelling in the past so it feels strange to be doing this at all, but a recent youth group gathering got me thinking about a few things. This past Sunday, my youth group leaders spent the evening focusing on all of us seniors in the group. They’d put together a list of questions for all of us, advice and such we would like others and our younger selves to know. I actually wrote a similar post about advice to younger me so today I’m doing something a little different. So this is for my high school readers, specifically a friend of mine, Esther. I read once that we should always have someone in mind to write for so this one is for you.

Dear Esther, (and other high schoolers)

Learn broadly and intensely. And I don’t mean just for school, I mean read good books and have late, 2 am conversations with people you love about anything and everything (i.e. I once stayed up till 3 in the morning discussing what were the MBTI types of all the characters on “Gilmore girls” with my sister). Learn about different cultures and don’t be afraid to ask questions. Lots and lots of questions. And I know right at your age, understanding and loving a lot makes you stand out, and not always in a positive way (believe me, I know!), but you will be a more interesting and well-rounded person because of it.

Another thing to remember is that high school is not the ‘best time of your life’. It’s just time, and like all time, you need to decide how you want to spend it. And, it gets better, it really does. I know it may not feel that way sometimes, but it’s called a life cycle for a reason. Good times roll around along with the bad.

I would also like to remind you to believe in yourself more. And I know how hard it is because you have all these thoughts and feelings, hopes and fears and it seems like just because there’s a ‘1’ in your age, that people (okay, fine, ADULTS)  will use that as an excuse to deny you respect and validation as a human who is capable of doing things and you’re given ten billion reasons to hate yourself and to lose faith in what you can do. But please, please, don’t. You will figure out who you are and it’s a long, messy process so be patient with yourself.

Don’t give up and don’t underestimate all the amazing things you are capable of. This is something I have struggled with throughout high school. I never really believed in myself. I let myself live by a long list of all the things I couldn’t do.

Also, forgive yourself when you mess up. Because you will. A lot. But just remember that it’s okay to change. It’s okay to change your habits or your hair or your clothes. Most importantly, it’s okay to change the way you think. You don’t have to hold certain opinions just because your peers, or even your parents do. (For example, I am a feminist.)
It is important though not to waver in your integrity. Test yourself and everything in your life by asking: “Is this right for me personally?”

Be a leader. You don’t have to be loud and commanding to do so. My mom would always tell me to set the example and that actions speak louder than words. And so with everything, I try to ask myself: “Am I making things better by saying/doing/behaving like this….or am I just making it worse?”

But on the other hand, if you have to choose between ‘helping’ someone at the expense of harming yourself (either mentally or physically), choose to protect yourself. Know your limits. Know what kind of people are good for you and what people are toxic. For example, I know/have known a lot of people with mental illnesses. I’ve learned that I can help people with depression/anxiety without harming myself. But not a lot of people can. But anxiety is where I draw the line. I can’t deal with anyone with bi-polar, sociopathic, narcissistic, tendencies. And then there are just some people that are toxic for other reasons.

Be open to meeting new people. Please don’t form cliques. Just don’t. Not only does it exclude others, but you’re harming yourself by blocking yourself off from many learning opportunities. Speaking of learning, learn from anything and everything. Learn both from the mistakes and triumphs of all those around you. No one is ever completely wrong or completely right.

And lastly, I want you to remember that nothing is ever irreparably damaged. There will, of course, be days where you feel like a fragile glass figurine and all it will take is a touch or a word to crack you into a billion pieces and you’ll be lying in bed, staring at the ceiling (maybe crying), and wondering if this chaos and pain is some inevitable chain that will forever keep on twisting tighter around your heart. But it’ll get better, you’ll grow stronger, I promise. And along with those dark days, they’ll be some moments that you’ll want to live over and over again because they’ll leave you full of hope and a grand love for life. That’s just life. Simultaneously perfect and horrid at the same time. Hold it all close to you because all these moments will soon be a fleeting wisp of what once was, and someday, you’ll look back (much like what I’m doing right now), and be in absolute awe of how everything came together.


 

 

 

 

 

 

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The Bright Side: Living With RA

When I was 8 years old, I was diagnosed with Juvenile Idiopathic Arthritis. Or JIA. (As those diagnosed lovingly call it). Since the age of six, I knew something was wrong with me, after I came close to dying from pneumonia. Soon after, intense investigation commenced, as doctors, some of the best in the state, tried to figure out why I had intense rashes, loss of joint movement, abominable pain and three close brushes with death. I spent ages 6-8, being poked and prodded at by doctors, all puzzled by my symptoms. It was 2005, and JIA in kids was pretty much unheard of. Probably why I wasn’t diagnosed till 2008.

Eventually, between 2005-2008, I adjusted to my new life of hospital visits, bloodwork and waiting rooms. It wasn’t ideal, but I was just a kid and had come to accept this new normal. The needles didn’t hurt so much anymore, the meds not so bad, and the doctors weren’t as scary as they had once appeared. The doctors said I could get better….and I believed them.

Until I was 9.

The year 2008 ushered in symptoms I wasn’t accustomed to. The pain in my lower abdomen was far more intense than ever before. And it occurred more often. Out of the blue, it would hit me, like I was being repeatedly stabbed with a rusty blade to the gut. Gradually, I found myself unable to move like I used to. First went my ankles, then my hips, then my hands. By the end of the year, as I neared my 10th birthday, all I could do was limp around the house and my doctors urged my parents to put me in physical therapy, saying that if my condition did not change soon, I might find myself in a wheelchair in just a few years. I remember hiding back in my room to cry more often and a state of hopelessness came and washed over me.

My meds were upped and they now had me on a drug originally used for cancer patients, but had proven to show better results for JIA patients. The pills worked for a bit, but by the end of the year, they were administered hypodermically. One of the side effects was decrease in eyesight and on my 10th birthday, I got my first pair of glasses.

Growing up Baptist, Bible stories were drilled into my head at a young age. I was taught that even though the events transpired long ago, they were still applicable today. So I remember, every night before I fell asleep, praying that God would do what he did for the lame man. To grant me just one miracle so I could walk again. I would imagine throwing off my finger braces, just as the man from the story had thrown away his crutches.

But God had other plans.

April. That was the name of my physical therapist. A short, dark-haired woman who pushed me through months of physical therapy. She was extremely patient and always greeted me with a smile every time I saw her. I was constantly frustrated with myself but she was always there, speaking words of encouragement (and strapping more weights to my ankles and wrists as I swam, which was so much fun).

I still remember my last session, when she (almost in tears) said how strong I was and how it inspired her, gave her hope. It wasn’t until a few years later that I realized what a wonderful compliment that was and I regret that I brushed it off as nothing at the time. To this day, I still wonder about her, how she’s doing but I never knew her last name so that’s the end of that.

February. 2009. 10 years old. We had finally convinced my Mom that having a laptop wasn’t a bad idea and she fell in love with Google. So on another one of her researching sprees (that was notorious for lasting awhile) she came across an article that talked about kids having something called Celiac Disease and how it was often just diagnosed as JIA. We brought it up with my doctor and she just laughed and repeated for the billionth time that “I’ll have you know, I graduated from The University of Chicago and I am absolutely certain that it’s just JIA. But we (okay, mainly my mom) wanted to prove her wrong so she’d stop waving her resume in our faces every time we suggested alternatives. Thank God for the internet.

March. 2009. Thus commenced the first of my Mom’s tests to prove my doctor wrong. Her idea? Absolutely no dairy for the entire month. Extreme, yes. But even though therapy had enabled me to once again walk without limping, I didn’t know how I could go through it again. If I’d mentally and physically survive another relapse. So after at least 10 lectures from my Dad on how “If you really want to get better, you have to do whatever it takes! Stop skipping your meds, do your exercises…” And he always went on this long spiel about stretching which I can still repeat (Or that might be because I still get that talk from time to time). At the end of the month, I was a bit better. But this wasn’t the miracle my mom had hoped for (My doctor really ticked her off), so for the next month, she had an even better idea.

April. 2009.

glu·ten

[ˈɡlo͞otn]

NOUN

  1. a substance present in cereal grains, especially wheat, that is responsible for the elastic texture of dough. A mixture of two proteins, it causes illness in people with celiac disease.

 

An entire month. One last shot. A chance for my mom to prove my doctor wrong and my one last shot at getting better.

We were ludicrously naive to what did and didn’t have gluten so I’m pretty sure the results could’ve been a lot better but they were drastic enough that we knew. Gluten was it. The miracle. There were still a few months till my next appointment so I continued with the gluten free lifestyle. My Dad wanted me to continue going dairy free as well, but puhlease! I was desperate, not crazy, so gluten free was all I did.

At the next appointment, my doctor was impressed with my results. My parents proudly mentioned that I was allergic to gluten and that’s why I was doing better. And she shot that idea down. I can still hear her: “Look, I went to The University of Chicago…we know what we’re doing and there’s no evidence backing up this celiac disease. It just took the meds a bit to kick in! Any other doctor will tell you this!” Ugh.

Over the months, I improved so much, that I was finally taken off of all meds. I remember how excited I was on my last appointment, February 9th, 2010.

Time passed and with every month, I continued to improve. I could walk, then run, and soon all prior events seemed like it had happened to a completely different person.

And as the memories faded, so did my concern for my health, I pretty much forgot about how Gluten had affected me and in 2013, I stopped my gluten free diet.

Big mistake.

March, 2014

I couldn’t move. There are 360 joints in the human body and I swear that all of them had stopped working. I couldn’t even lift a finger. I had felt completely fine when I went to bed and had no idea that I would relapse overnight. For what felt like forever, I laid there. Willing myself to move. I couldn’t open my mouth to cry for help because even my jaw had stopped working. Tears burned my eyes and blurred my vision as I tried not to cry. And I once again fell into the routine of forcing myself not to feel anything. Crying wasn’t going to fix anything.

After what I imagine must’ve been an hour, I felt my left arm loosen up. Then my left leg. Then my jaw finally loosened and a sob escaped my throat.

We had recently gotten rid of my old bed and was in the process of looking for another so I had been sleeping on a mattress on my bedroom floor. I remember it took me a good 20 minutes to get up off the floor. First, I rolled onto my side, then I hooked my left foot around my desk that was at the foot of my mattress. Then I began to slowly and painfully drag the rest of my body over to the desk. I remember stopping and staring at my desk for the longest time. The 2 feet I’d have to pull myself up might as well have been 200.

At this point, my spine started working again and I somehow managed to sit up. I still couldn’t uncrook my elbow, so instead I lifted my entire left arm and placed it on the surface of my desk. After falling down too many times to count, I managed to pull myself up off the ground.

You know how in Zombie movies, the zombies walk funny? Like one shoulder is jutted out and they’re always dragging one leg behind them? That’s how I imagined I looked.

I dragged myself out to the living room (which was on the complete other side of the house!). My dad was the only one up. I almost started crying again. My jaw had stiffened up again and I was so afraid to tell him because I knew that if I said the words aloud, I’d have to face them. Face IT. The arthritis. And I knew I couldn’t do that. I just wasn’t strong enough. I had broken in the worst way possible and in that moment, I wasn’t sure if I’d ever be okay again.

Finally, after laying awkwardly on the couch for 20 or so minutes, I finally gathered up the last of my strength to speak.

“Dawd, I wrewalsped. I cwan’t move”

Every word hurt and every movement drained me of the last of my strength.

At this point, my mom had come out and my dad told her what had happened. They both helped me stand and told me to go take a really hot shower. My mom helped me to the bathroom. A feeling of helplessness crashed over me and I thought I’d drown if I didn’t try to do something using my own strength. I didn’t want my family to see me like this so I insisted on taking a shower and getting dressed on my own.

Hardest thing I’ve ever done.

With the shower drowning out all sound, I finally allowed myself to feel and face the situation at hand. I remember as I was crying, trying to find the bright side to whole situation. I told myself  I’d get better in hopes that if I said it aloud enough times, I might actually start to believe it. I knew it was all my fault which made it all the worse. We all encounter days that we don’t think we’ll ever live through and that was mine. All my childhood fears about not being able to walk, unable to move had come true and I’d brought it upon myself. All I knew for certain was that I didn’t want anyone to hurt the way I was hurting so when I got out of the shower, I smiled at my family, tried to laugh about how clumsy I was and to assure them that I was going to be okay.

The thing about lies is that if we repeat them enough, we will start to believe them ourselves. I said “I’ll be okay” so many times to myself and others that I began to believe it.

The first week was hell. I had to relearn how to do everything, how to dress, how to walk, even how to hold my spoon so I could feed myself. I refused all help and was determined to show the world that I was going to be just fine! For the first week, only my left side of my body worked. My hands were the worst. Damaged beyond full recovery. They still haven’t healed. And some days, I’m not sure they ever will.

As Spring blossomed into Summer, I slowly healed. I went back on a gluten free diet and life was starting to return to…normal? I still don’t what that is sometimes. My ankles returned to a working state and I once again had no problem walking and running. My back, shoulders, and all my other joints healed and I thought I was in the clear. But hey, it wouldn’t be my life if something else didn’t go wrong!

So again, the story continues:

July, 2014. That summer, I went on a week-long mission trip to another part of my state to help out families who needed home repairs, but couldn’t afford to hire someone. And on the second day, I injured my hand. It didn’t seem to serious. just a strained tendon. On my right hand. So I wasn’t able to help out as much as I wanted to but on the bright side, was able to spend time with the people we were helping. That’s a story for another day though. Kept the wrist brace on my hand for about two weeks, and when it came off, I thought it was just a simple hand injury and I would be able to move on with my life.

That was not the case.

Over the months following, my hands got worse, until I was having trouble griping things and I was once again in pain. A knot of who knows what (I think it might be scar tissue) formed around my knuckle on my first finger. And then we knew. It was time. Back to the hospital. The place I hoped to never have to go to again. But this time I was determined not to just be that poor girl with arthritis. I wanted to do something more. So in September of 2014, I started this blog and if you go back to those first posts, you can read about much of what I’m about to tell you.

October, 2014. I went back on medication and had to take a couple months of physical therapy. I was actually very avidly blogging at this point so as embarrassing as it will be for me, I will post a link so you guys can go and read about those months.

At the end of December, I finally finished physical therapy and my wrists got a bit better. I wish this story had a happy ending, but alas, the world is not a wish-granting factory but I find hope in the fact that it doesn’t end here. And that even though I have had so many days that I didn’t think I’d live through, I’ve had so many more that I wish to live again and again. Fact of the matter is, it is the pain I have endured that has make me stronger, kinder, more optimistic than I ever thought possible. And yeah, I have moments where I don’t like my life very much, but I love being alive. Alive is messy, and painful and we all go through stuff that will sometimes literally break us, but being alive is also one of the most extraordinary things in the universe.

Our pain is NEVER permanent and I know this pain is only temporary. This life is only temporary and if having RA has taught me anything, it’s that when bad times roll in, we have two choices. We can either choose to yell and cry, get angry at the universe,  for giving us pain, or…we can be hopeful, remain optimistic in the face of adversity. Find the bright side. Cause when you come to think of it, life is pretty amazing. RA may have robbed me of my body, of my health, but it has given me so much more. I am a better person because of it. I am optimistic in the face of pain. It has taught me that life is only precious because it ends, and we cannot let ourselves die on the inside while we are still alive. Am I strong? I don’t know. Am I hopeful? I’d like to think so. I don’t think I’m ever going to be as whole as other people my age but that is something I can live with.

I’m always in this life, going to have RA. But just as I have RA in my bones, I also have an optimistic spirit

And that is something that will never break.IMG_3338-2

 

 

 

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