Tag Archives: RA

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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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.

gluยทten

[หˆษกloอžotn]

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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