A message to R.A. kids, and their peers

“Let’s play Twister!” I yell out. Twister was one of my all-time favourite games and my best friend, Anam, had one of her own. Playing Twister at Anam’s house became a ritual.

“Kay!” Anam beams and drags the game out from underneath her blue and white couch.

“Anam,” Her mom calls out. She enters the room, and sees us with the Twister mat all laid out. “Why don’t you guys play something else? This isn’t safe for Kiran. We don’t want her to get tired or hurt herself.” Her mom gently explains in a sympathetic voice.

“I won’t get hurt, I’m fine.” I bounce up and down.

A look of concern washed over Anam’s mom’s face, “Okay, Anam look after her.”

Anam nods. “Kiran, why don’t you spin the twister pad instead?”

“But I don’t like spinning the Twister pad, I want to play with all of you.” I look at my other two friends.

“How about we switch turns after?” Anam smiled and hands me the pad.

I pout and slouch in the seat. I spin the dial and with my eyebrows scrunched together I read out ,“Left hand on blue.”

Growing up with Rheumatoid Arthritis

A typical morning and some general advice for both R.A. sufferers and their loved ones.

Soreness pulses through my neck and shoulders. My hands feel cold, coated with a thin layer of sweat. I wrap my arms around my soft pillow. My knuckles collapse inwards and the feeling of push pins stabbing my joints returns. My knee joint feels like its separating, the feeling within it, like small pieces of glass, preventing my knees from bending, but when I do bend them I feel the shards of the concrete within.

My head burns, my temples beat in and out, louder and louder; this never-ending morning headache.

My calves tingle as I lose feeling in my legs. I dare not stretch, knowing full well that I will pull a muscle.

Just another morning: I wake up at 7:00a.m. but I lay there sometimes till 11:00a.m. I wait for the energy to get up. I wait for the pain to calm down. I wait for my anger to cool.

Describing the pain of Arthritis and fibromyalgia

To the brave Joanne Wurm for sharing her story

Hey Beautifuls,

I came across this inspirational video while I was doing research for my other posts. This brave young woman, Joanne Wurm, created a YouTube video to share her story with everyone, with a goal to raise awareness for rheumatoid arthritis. Her story is heart breaking and my deepest condolences go out to this brave girl and her family.

Thank you for sharing your story Joanne and for keeping your head up!

We’re all here for you <3

Love,

Kiran

High Heels and Rheumatoid Arthritis

“Mommy…” I dragged out the word as I bobbed up and down on my tippy toes.

“Hun ji (Yes).” My mom responded as she ironed my dad’s shirt.

“Could I please have high heels?” I fluttered my eye lashes and danced around her like the little Tasmanian devil I was.

“When you’re older, yes.” She smiled.

My love/hate relationship with heels

Reasons to take your vitamin d and calcium

When I was twelve, every night before bed, my mom would come upstairs with all my medications and I would always pretend to be asleep.

“Kiran, It’s medy time.” My mom would call out, thinking that making medicine sound cute would make the tedious task somewhat less tedious.

I would curl up under my Barbie bed sheets, with my blanket over my head, using it as some sort of tent. Medication wasn’t allowed in this tent.

I would yell back, “No. I don’t want it. I had it yesterday, and the day before, and the day before that, and the day before that. I don’t want it.” I would pout. I would cry. I remember hearing my mom cry. She didn’t want to give me the medication either; she didn’t want me to be sick. But I was sick, and she knew I had to take it.

“It will only take a second.” My mom would try again. I would rip the covers off, with my hair all in a mess. I would nod and take my medication.

I never understood why I needed to take all those pills

I never understood why I needed to take those little blue, green, and white coloured pills, which were sometimes circle-shaped and sometimes oval. Sick Kids said I needed to take them. My parents said I needed to take them. They probably even told me why, but I didn’t care to listen. I didn’t want to listen. I wanted to be normal.

Now I understand why I need to take them; I understand that if I want to be healthy, I have to take them. I hope this will help you understand too.

What are our joints made up of?

“60-Second Guide to RA” – Rheumatoid Arthritis Guy

Hello Good Looking,

I discovered this awesome post by Rheumatoid Arthritis Guy on trying to understand RA in 60 seconds. I was going to try to make my own but his is so epic that mine would never stand a chance in comparison.

I hope it helps!

http://www.rheumatoidarthritisguy.com/60-second-guide-to-ra/

Love,

Kiran

I promise the Prednisone weight will come off.

I followed the small blue and yellow foot prints stuck onto the floors to one of the Sick Kids’ examination rooms, and hopped up on the examination table and swung my feet back and forth.

Huge Scooby Doo stickers smothered the walls, giant teddy bears stood in the hallways, and there were more games and colouring books in the waiting room than I could ever imagine and there was even a play kitchen. But more than the material objects in the rooms and hallways, I loved Sick Kids as a whole. I loved the staff and my doctors and the reason is simple, they actually cared.

My experience with Prednisone

I was 17 when my doctor asked if I would go talk to another patient; we’ll call her Sara. Sara had been on prednisone for about four months, and I had just gotten off of it three months prior. When I was on the medication, my weight went from 105-ish pounds to around 125, but within a month or two of getting off prednisone, I was down to 110. I didn’t even work out, the weight just melted away.

What’s Prednisone?

Prednisone is in a class of drugs called “corticosteroids”. It helps “[prevent] the release of substances in the body that cause inflammation.” The drug worked for me but it has many side effects, as do all drugs. One of the many side effects of prednisone is rapid weight gain. I know that gaining a lot of weight, and that too uncontrollably, can be very hard so I agreed to meet with Sara.