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”