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Emily’s Story (Rheumatoid Arthritis)

Emily's Story (RA)My name is Emily, I’m 23 years old. πŸ™‚

I was first diagnosed with RA when I was just two years old. The only memory early on that I have is that I HATED doctors, so my story is mainly about my life with RA from school age on. School wasn’t fun for me. I can remember tormenting myself because teachers didn’t understand what was going on because I “looked fine.” My first flare ups were in just one joint effecting one knee, it eventually progressed into both knees. I never wanted to admit to my battle because the reaction I usually would get is, “You’re too young to have arthritis!” I would always wish that people could just understand that kids can have it too!!

I could go on and on about the many flare ups, all of the missed school, the fatigue, and hours with my head on the pillow. But my biggest battle started after I gave birth to my son, James. I was warned by an OB/GYN specialist during my pregnancy that I could flare up after I had my son, but I didn’t expect it to change my life so drastically. My baby boy was born on February 12, 2013. In September of that year, I woke up one morning at 6:00 am crying in pain. My left knee had swelled so much within hours that I lost almost all mobility in it. It took two months to get in to see my rheumatologist. When I did see him he drained my knee and voila! I could walk normal, bend over to kiss my baby again, I could carry him, and bathe him!

Shortly after, I took a trip to Florida to visit family. The whole time I was thinking, “This is amazing, I feel great…vitamin D from the sun, the warmth, just what I needed!” The day before leaving Florida my right knee began to slowly fill up with fluid. You really have to experience the feeling of your own joints being attacked by your immune system to know just how horrific it can feel. I start my drive home to Michigan. As I drive it’s like a hose is hooked up to me! The day after I arrived home I just knew I couldn’t wait to see my rheumatologist. I had ZERO mobility, I couldn’t walk from my bed to the toilet, I couldn’t do anything but hop around when I mustered up enough energy. I went to the ER and the doctors and nurses were astounded at the size of my knee, stretch marks and all (it’s like my knee thought it wanted a baby too). The ER doctor drained my knee, a process which normally takes a minute or two went on for twenty. We couldn’t even keep count of the fluid but we stopped at 150 cc’s. A normal effusion for me would be around 20 cc’s. I was in horrible pain (and I’ve given birth).

I was screaming so much that I didn’t realize until I heard nurses asking the doctor what was going on after he left the room. I felt pride when I overheard him telling them that you can be young and have arthritis too. He even went on to teach them about how it can effect children as young as toddlers! It’s an amazing moment, when your whole life you just wished someone would speak up and have some way of explaining how such innocence can be effected by such an invisible disease. That doctor just showed and taught it through me.

A week later at my rheumatologist I received my X-ray results. I had moderate joint damage. Moderate? I’ve only ever heard mild with the term, “80 year old woman” attached but now I’m a step up?! This may not seem so serious to a lot of people but for me to gain moderate joint damage with just one flare up within months was one of the most depressing times in my life.

I started methotrexate injections. The sound of this drug makes me cringe. I have hateful memories from my childhood of it. It causes severe nausea, joint pain (funny, huh), and the lovely feeling of being kicked by an elephant. So here I am, able to walk, but sicker than a dog. I still have fluid in both of my knees and now a persistent flare in my elbow. I still pick my baby up and kiss him. I crawl on the floor playing with him holding back my ouch’s just to see him smile. I still throw him up in the air just to hear his giggle. The truth is, he makes me feel no pain. He makes me forget during his little moments of glory. There’s really no comparable treatment.

Emily
Michigan
Submitted 02/07/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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6 comments

  1. I needed this today thank you so much for sharing. I admire your strength.keep up the fight.

  2. I just began looking for others with the same ailment. I was born with RA. I’m glad to hear success stories from others. congrats on your baby. Be well, Eric

  3. Woke up yesterday with terrible pain encountering the left side of my thighs. It didn’t hurt much in beginning but gradually as time went past the pain grew and I was unable to twist my back without me screeching.This is my second day with what I’m assuming is called RA and according to my researches there doesn’t seem to be a cure! It’s funny how your life can change during a night. I’m not still exactly sure from my diagnoses but, my pain is quiet matching to the RA diagnoses. I think people should really appreciate their health stability and to always thank god for they have. Congratulations to all those suffering from RA and especcialy in young age like me ( I’m almost 14). Good Luck

  4. Emily, you are someone to read about and be inspired by. I so relate to “You really have to experience the feeling of your own joints being attacked by your immune system to know just how horrific it can feel”, β€œYou’re too young to have arthritis!” It’s amazing how you wrote your story. Very …. real πŸ™‚ but just the way i like it. you earned your gloves too πŸ™‚

    Since i wrote in to flagc (story is under ur’s) i have updates. I was supposed to write about my upcoming chemo but i faced and lived through liver failure,chemo and now typing after surgery of my metacarpal phalangeal (hand tendon repair) surgery. but like u said, Pride is what i feel every time too, isn’t it odd? I feel i’ve been given this thing as a child (20 years ago this year) so I can benefit the rookies πŸ™‚

    Great Story Emily, so well written. I hope u feel better and it does burn out finally as we keep hearing. I’m so glad u have a baby too, they keep you moving i see, and isnt it the best way to keep mobile:)?

    Emily plz visit my blog. its for “people like us” as Kelly Clarkson says πŸ™‚ You would be very welcome if u ever wanna write into that blog too,i would love to have someone who has such a lot of years of experience too. I can add authors.

    Love and support,
    Sabina.

  5. Debbie Merryman

    I noticed in your article that you had some issues with one joint at a time at some points. I have palindromic rheumatism. I flare up one joint at a time and not bilaterally like with RA. Look it up.

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