Dear President Obama, Talk About Arthritis

Ask President Obama to talk about the pain, cost and disability caused by arthritis. Then, share this video with your friends. If we want to see a cure, we must start talking about arthritis too!

Learn more about the video and our request to President Obama at http://www.arthritis.org/ask.php

Things I Took for Granted Before Arthritis

When I tell people I have Systemic JUVENILE Rheumatoid Arthritis, I often get a quizzical look. That's right, people think, "Hey, lady, you're 27-years-old. There's not much juvenile about you." And while this is true, my diagnosis at age 17 gives me the unique experience of being diagnosed as a "child" but living with the disease as an adult. 

I was incredibly lucky to make it through my adolescence relatively unscathed. I was healthy and happy for my childhood and many of my teen years. I was able to complete my physical education classes without needing accommodations. I was able to write my English paper rough drafts while gripping a pen in my hand. I was able to open jars of paint in art class without having to ask for help. All of this makes me incredibly lucky. 

There are so many things I took for granted before my JRA diagnosis. Here, in no particular order, is a list of things I took for granted while I wasn't flaring: 

The bottom of socks. That's right, just the bottoms. When my first major flare happened, I could barely walk, so I would shuffle around my house. While doing this, I managed to wear out the bottoms of almost every pair of socks I owned. Truth.

The ability to brush my teeth by myself. Have you ever tried to open a tube of toothpaste during an arthritis flare? You can barely grip a handrail, let alone something small like a toothpaste cap. 

Being medication free. I miss the days where I woke up and was able to drink water without having to choke down a bunch of pills with it.

Bending. Bending anything. Bending at the waist to pick things up, bending my elbows to put a coat on, bending my fingers just because I want to...

Buttoning pants. This is interchangeable with buttoning tops, pulling zippers up and down, and generally putting on any clothes that require movement. 

Things not popping. All of the sudden, I can pop anything... neck, toes, jaw, fingers, hips, etc. It's a fun party trick but it gets rather annoying when you roll over at night and everything crackles. 

My appetite. At one point, I was dropping weight in a hurry, and not on purpose. My diet turned into consisting of solely Slim Fast Shakes mixed with a ton of highly caloric full fat ice cream. Vitamins, minerals, calories, and fat. Actually... that sounds pretty good right about now... 

- Angela

 Read Angela's Bio 

Life with JRA

At the age of 17, I was diagnosed with Systemic Juvenile Rheumatoid Arthritis. Before my diagnosis, like many others, I thought arthritis was something only elderly people had. But, after three months of pain in all of my joints, a massive weight loss, and sleeping up to 18 hours a day, I quickly learned that arthritis is a real possibility at any age.

It started normally enough – a dull ache in my knees. I’d convinced myself it was a late growth spurt (just a few more inches!), but when the pain started to spread to my ankles, toes, hips, shoulders, elbows, wrists, hands, fingers, neck, and pretty much everywhere else imaginable, I told my parents who took me to the doctor.

My family doctor told me early on that he thought I had JRA, but he sent me for blood work and with a recommendation to see a specialist. I had the first six vials of blood taken that day… I stopped keeping track of how many they’d taken after I hit 200. While my symptoms started in early April, my diagnosis didn’t come until July. Since my rheumatoid factor never popped positive, the best way for diagnosis was to eliminate every other possibility. I’d been hospitalized and taken multiple trips to Riley Hospital for Children. I’d been through blood cultures, body scans, and bone marrow extraction. I was tested for Lyme disease, leukemia, lymphoma, and host of other diseases I can’t pronounce. When the diagnosis finally came, I was grateful to have a name for it, but it didn’t make it any easier.

While I was sick, I lost 15 pounds. Once I got on a combination of medicines, I gained 12 pounds in 10 days – a nightmare for a senior in high school. While I felt better, I was still exhausted and achy. I had to relearn how to live again, and find my limitations and boundaries.

Studies say that over 300,000 children in America live with arthritis. That’s a conservative estimate, as no recent studies have been conducted on the actual number of children with arthritis and related immune diseases. Additionally, millions of young adult live with arthritis.

This is something that affects my life each and every day. I’m a 27-year-old English teacher who has to wake up early for work so my joints can get used to moving after sleeping. But, I’m one of the lucky ones. On a day-to-day basis, my arthritis only affects me in the mornings and evenings, unlike so many others who have been crippled by the disease.

Register Now!

A few summers ago, I had the privilege to attend the National Juvenile Arthritis Convention in Hershey, Pennsylvania. There, I was able to meet so many children and young adults who live with this disease. They are some of the most extraordinary people I’ve ever met.

One day, on a break, I went to the pool at the hotel just to be outside. There, a group of children from the conference were swimming while their parents were in sessions. As two boys splashed around, one said to the other, “We’re the luckiest kids ever!” And the other little boy said, “I know!” Tears immediately welled up in my eyes. These are kids who have to get weekly injections of biologics in order to control their arthritis so they can walk. These are kids who have faced ridicule from classmates who didn’t understand why they sometimes had to use wheelchairs. These are kids who face immense amounts of pain each and every day of their lives. These are kids who are amazing. 

There are so many things I’ve learned from having arthritis. I’ve learned how to enjoy everyday, even when they’re not perfect. I’ve learned how to make JRA a part of my life without letting it define me. And, slowly, I’m learning to accept support from others. The Arthritis Foundation has made all of this possible. I can’t wait to see what the Kids Get Arthritis Too event can do for others like me. 

Kids (and Teens!) Get Arthritis Too Family Day
Saturday, March 26, 2011
9 a.m. – 1 p.m.
Marriot – Downtown South Bend 
http://AFKidsGetArthritisSB.kintera.org/

- Angela
 Read Angela's Bio 

 

Kids (and Teens!) Get Arthritis Too Family Day

Hello, all! This is the first blog I've ever been a part of, but I'm excited to be teaming with the Arthritis Foundation to let you know about area events. As someone who has lived with Systemic Juvenile Rheumatoid Arthritis for almost 11 years, I understand the frustration and pains of being a young adult with RA. The Arthritis Foundation offers support to sufferers of all ages, and, our first event this year in South Bend is just around the corner, the Kids (and Teens!) Get Arthritis Too Family Day on March 26th. This free event is for children, teens, young adults and family members of those with arthritis. 

Here are the details:

Kids (and Teens!) Get Arthritis Too Family Day
Saturday, March 26, 2011
9 a.m. – 1 p.m.
Marriot – Downtown South Bend 
http://AFKidsGetArthritisSB.kintera.org/

Sessions are prepared for children and young adults ages 3 to 21, and their parents and siblings. The adults will focus on networking, nutrition, coping strategies for children, and navigating the education system with arthritis. Kids and young adults will be entertained with arts and crafts, exercise and meeting others who relate to them. Lunch will be provided and there will also be information available for the South Bend Arthritis Walk, taking place May 1. Families can RSVP online or by calling 574.251.1424. 

- Angela
 Read Angela's Bio