Are you faking it?

I went to the mall today and had a few glances my way and at my leg. My knee isn’t stable because of the injection, I need time to adjust so my knee isn’t wobbly which affects my hip and how I walk.

I was stared at, which was fine, most people come up with the conclusion that I hurt my knee or my ankle with probably a sport or a tumble. A little girl said to her mom, “Mommy, she owie?”  and yes, it’s an “owie”, I now need a knee brace to walk without pain until I strengthen my knee.

My right leg has always given me problems, my left, while it’s swollen it’s not painful.

One time I went to get coffee at tim hortons with my boyfriend, we had the disability sign that you put on your car mirror, which I had gotten approved and recommended by my doctor, and I wasn’t feeling all that well, but I thought if I moved a little it would loosen up my leg.

So we parked in the handicap spot, when we had returned, there was a note written and put on your car that said “This is for disabled people, you should park some where else!”

 I don’t like putting on display I’m disabled because I feel, already being a women, a young aboriginal women, would just put me in more danger than necessary. 

I wasn’t using my cane that day because, if it wasn’t a crippling flare up, I don’t want to draw questioning attention.

That note left on our car was for the lack of better words, infuriating and disrespectful.
What I had felt in that moment had made me feel more enraged than anything I have read.

I stayed there and looked around to see if this passive-aggressive person had stayed to watch us read it.

They’re lucky they either took off or I didn’t notice them.

There was a sign on our car, and I was clearly limping, that’s not something you would do to someone in a wheel chair or in crutches.

Honey, if I was able to park somewhere else I would’ve but I was having a flare up and I’m not going to make it worse just to please you.

The nerve of some people, just because I don’t have my disability on the surface, making it obvious, doesn’t mean it’s not there.

It also doesn’t mean I shouldn’t be respected.

I had never had anyone question my intentions that way, who wants to publicly show you have a disability?

I always wondered if people thought I was limping just for attention, that I’m just faking it.

I guess, there are some people in this world that think so

I have all I wanted to say for today, short I know.

Will write more.

“Pain demands to be felt”

 

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You see me as disabled, I see myself as a warrior

I woke up this morning, and starring at my boyfriend, I wondered would we have had found each other if I didn’t grow up and been through what I had been through and lead me to where I am now.

Having my arthritis under control, going to school for Culinary Arts, just finished my first year and going for my second, I have a stable job for the summer, and my employer understands when I can’t make it in, I always felt calling in to say I can’t make it because of my arthritis was letting them down because I was offered that job, they didn’t need to take me, but they did… Yes, it’s something I can’t control but I sure as hell try.

However I never called in for two months straight, which I am proud of, but then the recent changing of medication from my holy grail Enbrel to a new drug (Simponi), not having a flare up in 6 months, and working over-time had knocked me on my ass, and made me almost stay there for two weeks.

I had an emergency appointment with my doctor and was given the steroid I said earlier on in my blog, it helped to the point where I could sleep without waking up in pain every hour but not to where I could walk without the pain, I was able to stand so my chef just got me to peel potatoes and other things that would just make me stand in one place. My chef tried sending me home every time she seen me walk, but if I wasn’t having that white hot flash of pain then I was staying. That’s something my dad taught me, work ethic, you feel like shit? well that’s too bad, things need to get done.The nurse who gave me the steroid had told me it would take a few days to take full affect.

It didn’t, then I had to call in again and get a real injection, which I had yesterday and now feel no pain in my knees or hip.

Back to what I said earlier, would I be the same person?

I don’t believe I would, if I didn’t take medicine, if I was at full health.

I would have become a dancer, vapid, and narcissist, tried for ballet and anything that came my way, but I feel I would also developed an eating disorder, had several boyfriends, probably had a kid by now, still alone and living with my parents.

The more I think about it the more I feel thankful to be given such a hard life. You wouldn’t catch me saying that when I was a teenager. You think I’m being hard on how I would’ve ended up if I didn’t have this, but I’m not, the amount of people from my reserve that ended up pregnant with two kids, a drug addiction, multiple poor choices, and not get an education is beyond astounding

I know I’ll start an argument with someone with that statement, or think that I’m better than you. I’m not but at the same time, I am.
I could have given into drugs and alcohol as an escape, trust me, I wanted to several times, but I knew I am better than that, despite all my insecurity’s, disability and barriers, I’m worthy of a good life, I am worth something.

When I say a “hard life”

I’m not just talking about my arthritis, I was bullied and harassed by boys growing up, always being told to lose weight by them or being pushed up against walls/lockers, but for some odd reason my limping was never mentioned.

I didn’t tell teachers that was going on as nothing was ever done to help me, it was just one of those “boys will be boys” kind of things that teachers and parents love to hide behind because taking responsibility and punishing the perpetrator is too hard on them. *eye roll*

That was another lesson I learned , nothing was fair, not for the victim.

I had other traumatic encounters, not happen to me, but happen those closest to me, which I internalized and had it etched into my memory and soul as not to forget how horrible humanity can be, how no one cares about the victim.

If there was such a things as a death note, there is a hand full of people on my shit list that would be wiped from the face of the earth in the most brutal way.
A death note is from an anime show, if you write the persons name in it, they die in 40 seconds, anyways that’s not to point of this blog.

I’m thankful that these things helped shape me into the woman I have become, even if at times nearly killed me.

Without it, I don’t want to know how I would’ve been. If any other person developed this disease in my family, wouldn’t have made it to my age. That’s how hard it has been living with arthritis.

I was reading other peoples blog about living with arthritis, and it was always how they are now 25 or 30 and now developing it, or already had it for 3-5 years.

I know you think I’m going to say suck it up, at least you didn’t have it when you were six!

But I’m not that hard, I don’t think that way, I just follow their blogs, and give support because it’s confusing what’s happening and devastating when it comes at you full force.

Another Blog I had read, this women with a child and husband, had written for years about it, then one day, it stopped. I read the comments on where did she go? She died, her arthritis had gotten to her, the arthritis had inflamed the lining of her organs and she died…

It’s rare…but it happens, another way arthritis can affect you, is your eye sight, mine is currently bad, I had 20/20 vision until last November(2013) when I thought I had pink eye turned out to be my arthritis inflaming my eyes to where my vision was becoming blurry, and fast. I now have to take eye drops every hour until I can see clearly again, then slowly get off it over the course of a year or it will become blurry again.

It can also come out in your skin and nails, rigged nails, that easy chip and peel. Your skin becoming itchy, scaly and sometimes cracks and bleeds.

Of course these side effects of arthritis, isn’t common when you have “moderate” arthritis, but if it’s Moderate to Chronic like mine is, it happens.

All of this is sad, but I don’t pity myself. I keep going, defying the odds against me because f*ck it.

I see myself armed to the teeth, a warrior, a boss ass bitch, and it’s going to take more than that to pull me under.

I have all I wanted to say for today.

Please come back, share your thoughts.

“Pain demands to be felt”

Seeing myself through your eyes

I want you to understand the battle between living with arthritis and just plain living, the physical and emotional strain it has on a person.

A visual of how it feels to live with arthritis, a battle with flare ups.

The link above is a video from “so you think you can dance”, I haven’t been able to bring myself to watch other people dance and prosper without feeling that bitterness in my mouth.

But I feel this visual explains trying to control a flareup before it happens, when the flare up comes, depending on how bad it is, it can feel soul crushing, then it releases you but it’s always there, lingering.

If you are a musical type of person instead of a visual this can also explain it.

The voices and music are a representation of how the beginning, during and after affects of a flare up

I realize the clip above is 10 minutes long but I feel it’s well worth it, explaining how it could cause your emotions and those around you to feel chaotic and unstable.

I know my family, friends, and boyfriend love me, there is no doubt in my mind about that.

The emotional strain weighs down on my loved ones, sometimes with an over whelming intensity.

They see me in pain and the first reaction is to help in anyway possible, to get me food, water, a pillow for my legs to rest, my medicine, but they still wait on the side lines, waiting for the storm to pass.

I didn’t think of how it affected those around me as a teenager, all I could think about was the pure rage and pain going on inside of me.

I know my parents, and sisters, would have given anything to take this from me, as do I.

I will go even as far as to  say I would’ve given my first born not to feel this for as long as I live, and just live with the regret. But that’s not how life works, nothing comes to your door to offer an exchange for your health.

You are given the cards you are dealt. Being given the cards I was dealt, had shaped me into what some people would call “cold”, “hard”, or my favorite…  “A Boss Ass Bitch”

My family has never asked why I was so angry, or cursed god, because they knew this was unfair, I shouldn’t have had to go through this, as some people say, it’s an “old person’s disease”.

It’s not, you can get it at any age, it doesn’t have sympathy, it doesn’t care if you had that hot date tomorrow, that wedding in a few months, that you were six years old. It comes, and when it does, it’s with a vengeance, or seeps in like a slow working poison.

My mom did ask me at one time why I was so “hard”, she had teared up at a commercial or tv show of how this person died, and my response was “Why are you crying? you don’t know that person.” She just looked at me and said “why are you so hard?”

This is why I’m hard, I see things for how they are, what they are, nothing is fair..nothing.

I am always asked when did I get arthritis, and when I say the age, all I get is sympathy eyes, and a sad soothing voice saying “That shouldn’t have happened, kids deserve to be kids, that’s terrible”.

While it is terrible, I don’t want your fucking sympathy.

I want you to look at me and admire at how strong I am, be that strong and count your lucky stars you don’t have to be careful with what you do day to day, to live life to the fullest, because you don’t want this, to become so hard next to nothing makes you cry.

The only thing that had made me cry was the intense flare ups and having a loved ones die.

Well… except for this steroid shot I was given for my legs, and the effects was hyperactivity and emotional bursts, guess what I got?

I was crying at the drop of a hat… listening to a sad song, reading the fault in our stars…damn steroid..

But that’s not the point!

I see myself through your eyes, I see the way this disease hurts my loved ones, wanting desperately to help but can’t, not knowing what to do, so they sit next to me and let me just whimper in pain, letting me know they are there, they see me, they love me.

This brings me to my next two lights in my life.

My boyfriend, when I had met him, I was recovering from a bruised heart, as my first boyfriend was manipulative, and emotionally abusive. I wasn’t looking for love, since if that was the type of person I was going to attract, I’d rather be alone my entire life.
The first time I met him, I opened up to him immediately, I had no idea why, I just did, there was something honest, and kind I could see, and I needed that kindness in my life.
We went to movies, stayed the night, and couldn’t stay away from him, being away from him- I’m going to be honest- it hurt like hell to be away. While I was falling for him, I also had concerns, what about my arthritis? he’s going to find out I take pills, and needles, he’s going to see me as damaged goods.

This is what finding love was for me, that thought in the back of your mind, he’ll see you as damaged goods, and leave you for someone whose life is easier to deal with, who is going to put up with all that? He’s going to see the pain that comes with the flare up, freak out and leave.
That was a constant thought growing up, whose going to love me? who is going to want me?Another thought I had was, can I even have children? What if the medicine I had been taking through the years now prevented me from having kids? I was taking birth control but that doesn’t mean I could still have kids, it was just a precaution so I didn’t end up miscarrying or have a still born because of my medicine.

So I pushed him away a few times, withdrawing emotionally, and he still put up with my shit, he seen me for who I am, what I take, what I’ve been through and still wanted me. That kindness, honesty, and his dark sense humor that’s just like mine, made me look at relationships in a whole new light.

I want to spend forever with that man, it has now been 4 years- 5 in September that we’ve been together, living together for 3 years, we had talked about all the concerns I have held in since being a teenager.

My other light, my second niece, I love her with as much intensity as I do my first niece and want the same things, to protect her, to guard both of them like a bodyguard against life, be a kid as long as possible.

She is so much different than her older sister, her older sister is like a fragile flower made of glass, and she… she is like a hurricane, strong and see’s through your bullshit and will call you on in, trust me, she’s only three but she does.

“Why didn’t you get [insert item here]? you said you would!!” She remembers what you had said or promised months ago.

My nieces know how much I love them, they will often mistakenly call me “mom, I mean Shay!” They also often when having an argument with their mom or have tooth surgery cry “I want Shay!!!”

While I often feel like the strongest woman in the world, I do have my pit falls, for instant, today and the past week and a half my flare up has been so terrible that it was like reliving my teen years.
I tried putting on my sock on my right foot and because I’m so swollen bending over had be come difficult and lifting my leg was out of the question, it had taken me 10 minutes to put on one sock, I had a mental break down, the sock was half way up my foot but I couldn’t get it over my ankle, and started to cry and laugh at the same time.

Why?

Because the strongest woman in the world was taken down by a fucking sock.

A SOCK! I couldn’t help but cry and laugh, it was a mixed feeling of ironic and self-pity I had in forever.

That’s the thing, you need to laugh even through the pain, have fun, and remember the good times or that darkness comes back full force.

I have all I wanted to say for today.

I will write more tomorrow.

Please leave a comment, share, and come back for more of an understanding.

“Pain demands to be felt”

Early onset and teen years of Rheumatoid Arthritis

Lets start from where I left off, my cells are retarded and that’s no one’s fault but my own body.

I however didn’t understand growing up with this disease, that it didn’t define me, it wasn’t who I am, or had to control what I can do with my life, I didn’t come to this conclusion until a lot later in life..

All I seen at the time was; you are not normal, you can not be like the other kids, you have to be careful, you need to think before you act out or run or play, what have you.

I always had to be careful with what I did, or it could trigger what is called a “flare up”.

A Flare Up is when your joint that has arthritis becomes so swollen with liquid you can’t move that joint, it is tender and painful to step on or move. Any small jerk movement can cause an incredible amount of pain.

This is another thing that is hard to explain to the able bodied…Pain.

When the able bodied think of pain they think of a small pin prick, or what a sprain feels like.

When I say something is painful, I mean breaking your leg and trying to walk on it kind of pain, the amount of pain that comes with arthritis isn’t something you can prepare someone of, it can come as a irritated uncomfortable feeling to it feels like you had just been shot, and just keep getting shot over and over again with every move.

I grew up not to complain about anything, if I had an uncomfortable feeling in my ankle it was nothing new, any other person would have mentioned it a few times during the day to friends and family.

I did not, I wasn’t raise to be some whining baby, I was raised to be as tough as possible, so when I said something hurt or was painful, you can bet that meant it felt like I got shot, or that I had broken my leg and now attempting to walk on it.

I remember the first time I had this amount of pain, I believe I was eleven, I had gone on a field trip with my school to Edmonton, and when we got back my left ankle had flared up so much, I thought I had broken it, then the doctors were called, an appointment was set up.

When I had gotten to the doctor, the flare up had gone down that I didn’t have any pain, but the doctor had suggested I have what they called an “Injection”.

This injection is a two inch needle, being delivered into the joint with a type of medicine that would take away the build up of liquid in the joint.

This is what an injection is, that was my first one, and it certainly wasn’t my last.
The first time it was painful, but as the years went on, I welcomed that few seconds of pain as the after affects was well worth it.

This injection doesn’t last however, it only last for 3 months, 4 if I’m lucky. Then I return to the morning stiffness and rare flare up.

With all this pain you need a type of release, or it will drive you to the darkest place of your mind you never knew you had or could imagine.

By the time I was 15 I had taken 4 different medications, along with a pain reliever, and a type of medicine which is given by a needle, sort of like an insulin shot and several other injections.

I had by this time, been driven to the darkest places in my mind, I had become so jaded, hateful and enraged that anything would piss me off, looking at me, laughing, talking…

 Seeing other people happy…

Anything would set off my anger, I no longer had an outlet like I did with dancing, I turned to singing and it eased what I wanted desperately to scream at the world, this had become my new outlet.

But it still wasn’t enough, I had hit a new low, one where light couldn’t touch the darkness.

During my teen years, I had woken up everyday to so much pain that it would make a solider cry. I could barely walk 5 feet to the bathroom, so I would limit my intake of water and other drinks so I wouldn’t have to go to the bathroom as much. I couldn’t sleep comfortable either, any way I slept was just as painful as the next.

I had gotten to the point where I went to bed every night praying I wouldn’t wake up, estimating how many pills I would need to take, how long the ambulance would take to get to our apartment.

You need to understand, RA is nothing to laugh about, or to brush off. I no longer feel the need to leave this world, but I did at one time.

I know your thinking why didn’t you get help, or talk to family? Why keep it to yourself?

Because I didn’t think I was important enough to give thought too, my mom was going to school everyday and was always locked up in her room studying or writing papers under so much stress, my dad was often gone to work in small towns for construction, my two sisters were gone in their own rebellious world.

I had failed a grade because I couldn’t make it to school consistently.

My mom had taken me to the therapist, I seen her once, because the second time she was an hour late for an appointment and I decided it wasn’t worth my time.

It was sink or swim, and being the person I am, I decided to say fuck it, lets see how far I can go and swim.

Why am I still alive? Because I had found my little light amongst the broken promises, bitterness, rage, lies of getting better if I take this new drug.

It came in the most unexpected way..

My niece was born, she was so tiny…so tiny. No, she wasn’t my daughter but I felt the need to protect her from the things I’ve been through or had seen (I was bullied and harassed growing up too). I wanted her to keep those rose colored glasses on as long as possible. I couldn’t hurt her like that.

She had become the light in my world of darkness, one where I was convinced light would never touch.

I remember when she was three, my mom had gotten her to wake me up on a weekend, since anyone else woke me up it would be met with swearing and throwing of things.

I was having one of my flare ups again, she told me to wake up, and I did, I sat on the edge of my bed and she said go see grandma, I had gotten up and had taken a painful step, my niece starring at me with those big brown eyes, said what’s wrong, I told her my foot hurt, and she said “oh! let me help!” and had taken my right hand and lead me to the kitchen.

I will always remember that. Especially when that darkness starts to linger over me.

That love for her is what kept me going.. her existence saved me and brought back a small part of my innocence.

Now, back to being a teenager.

I had hated high school, with a burning passion. But not like how I hated gym class.

The gym teachers didn’t understand what Arthritis meant or the affects of it, they wouldn’t take it seriously and would say to me.

Just walk it off! exercising make’s it better!

Telling me to walk it off, it like me smashing your knee cap and saying walk it off! exercising make’s it better! (sarcasm)

Exercising does make it better, when you don’t have a flare up!!

But my arthritis wasn’t under control like it usually is now. Even with a doctors note explaining I can’t do what the others could they would still tell me to walk it off. Their ignorance was astounding. It was continuously like banging your head against a brick wall expecting it to turn into pillows.

I somehow managed not to “Fail” gym glass, I believe it was mostly because I would at least show up, even with their lack of understanding.

When I turned 18, I was transferred from the children hospital to a specialist for rheumatoid Arthritis, by this time my arthritis had spread from my left ankle to my right, to my left knee and then the right knee, it is now in my right hip, on the bright side, my arthritis hasn’t worn down my cartilage.

This new doctor had taken me off the medicine I had been taking and given me a different kind, it was still a type of insulin needle but this new drug called Enbrel, had started to work, which was surprising to me as I felt I was always lied too and used as an experiment to see if I could be a case study that has a low chance of working.

He was upfront of how it worked and if it didn’t work he wouldn’t bullshit me about having it build up in my system, then it’ll work, he would just take me off it  if there wasn’t enough progress. If I had a flare up I was in his office within a few hours to less than a week to take a ‘quick’ injection and it was quick, one minute tops thankfully it wasn’t often.

Before I had turned 18, I had met him twice, once at the children’s hospital to introduce himself and offer me a type of injection that they would freeze my joints and use a low dose of radiation causing my arthritis to go into remission. The second time was at the actual surgery, it didn’t take, of course. It was a 80% chance of it working, I knew going in, I would be in the other 20% because nothing else had worked and why get my hopes up.

I’ll write more tomorrow.

Please come back, share your thoughts, and understand.

“Pain demands to be felt”

 

Lets start from the beginning

My name is irrelevant as of right now, and also my gender.

Let me explain why..

I want you to put your self in my shoes and imagine being six years old, just waking up from a good nights sleep and as you are walking from your bedroom to the bathroom your mom stops you in your tracks, asking you to come over to her. When you approach her she asks, whats wrong? what happened to your foot? You reply with an unsure “nothing” then she asks you again what happened to your foot, and you still say nothing is wrong then she lets you go to the bathroom.

She takes you to the doctor continuously for a year, you eventually become custom to waiting for hours to see a doctor. Until that same year a different doctor finally explains to your mom with you sitting next to her, that seven year old you has Juvenile Rheumatoid Arthritis.

Not knowing what that is you shrug it off and let your mom continue talking with the doctor and you find out you need to take medicine from now on.

Now that you know where it all started, let me start over.

My name is Shaylene, I am a 23 year old female

I have been living with RA for 17 almost 18 years now if you count being given the run around for a year with my mom.

I didn’t know at the time being seven and all what RA meant.

I did find out 2-3 years later after being diagnosed meant a life time of pain and suffering.

Let me clarify that statement, I have always been wiser than my own age and have always felt like a little old lady on the inside, that being said.

I started to lose flexibility in my left ankle (where it all started) a few years later, I then realized I would never be able to become that dancer I wanted to be if I can’t move my foot.They were so happy, beautiful and free. I wanted that more than anything, I came to a sudden realization that watching dancers dancing on tv…. I felt my dreams going up in flames right before my eyes.

I remember thinking along the lines of “I was losing mobility in my ankle and they got to dance, I had barely reached ten years old and developed this disease …and they got to dance..”

I don’t think anyone understands what it’s like to have your dreams crushed in such a way that it forces those rose colored glasses to be ripped right off your face.

Other people wonder when they lost their innocent view on the world, I however know my innocent view on the world died that day.

I know your thinking that’s overly dramatic, and it is, but you also most likely didn’t have your dreams taken from you because your own body betrayed you.

After that day, I grew up fast knowing to take responsibility for my medication, wearing the right shoes, doctor appointments and other heart aches that come along with having RA.

Heart aches such as not being “normal” or being told by doctors you are not normal, and the constant asking of why are you limping? Giving an answer to why you are limping is never easy, for years it was awkward for me to explain why I was, as no one understood what RA is.

I’ll explain what RA is and this is going to come out harsh and politically incorrect..

My cells are retarded, they think there is a invader in my joints and decide to attack it and just keep attacking it, eventually wearing down the cartilage in the joint. That is the very bare basic of what RA is, my cells are just retarded.

However, it is getting late and I need my rest.

I will keep writing.

I hope you come back to understand more of what it’s like to live with RA.

“Pain demands to be felt”