Megan

Name: Megan

Location: Ottawa, ON

Age: 37

Diagnosed with Juvenile Rheumatoid Arthritis at age 16

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How has your condition affected you? Significantly and every day would describe how I have been impacted by my RA. I have had a knee scope and two shoulder replacements. My shoulder disintegrated before my eyes, and I now beep going through airports. A couple of sentences cannot do justice to the impact joint replacement has had on my life.

There hasn't been a day in my 21 years living with it that I haven't thought about my RA. Can I do this? How much energy do I have? How sore will I be tomorrow? What is the tradeoff? It's only now that I have finally found a drug that works for me, am I thinking less about what I can do and focusing more on just doing it. It's a different struggle, and I am happier to face these challenges. But I still think about my RA every day.

What would you like for other people to know about your condition? Living with a chronic disease is a roller coaster. From one hour, day, year to the next. My emotions have ranged from rage to despair, hope to fear, joy to misery, jealousy to confident, exhausted to elated. It is emotionally and physically exhausting to have a chronic disease. My ability to care for myself and others has ranged from not being able to dress myself, comb my hair or walk to school, to being able to run a 5K race with energy and smiles to spare. I have learned, rather painfully, that there are limits your body puts on you, and there are limits you put on yourself. Only time, trial and error will help align what you want to do with what your body is willing or able to do.

What would you like to tell someone who is recently diagnosed with RA/JRA? Reach out and connect - - there are others in your local community and online who truly understand your struggles and triumphs. I took a longer road reaching out to the RA community, but I have felt nothing but support from everyone I know in the online community. Trust your doctors and follow your treatment  plan - to start. Over time, you will come to know your disease better and be able to make more informed choices based on what is best for you. Research your disease, learn everything you can - be an expert so you can educate others. Eat well and get lots of sleep. Share your struggles with others - family and friends want to help, they just need you to articulate what you need.

Megan's favorite quote: "What doesn't kill you, makes you stronger."

Megan's blog: http://sticks-and-stones-blog.blogspot.ca/

Thank you so much for sharing your story, Megan!

Margery

Name: Margery

Location: DeWitt, NY

Age: 53

Diagnosed with Rheumatoid Arthritis and Sjogren's Syndrome at age 50.

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How have your conditions affected you? There are days when I forget about the RA and try to do something that used to be doable (such as walking outside in 90-degree heat, or helping to clear a hiking trail at our daughter's camp), and then suffer for days afterwards. Sometimes, my husband and daughter don't want me to come along on an activity because I slow them down.

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Christina

Name: Christina

Location: Fleetwood, NY

Age: 32

Diagnosed with Polycystic Ovary Syndrome at 25, Lupus at 29, Type 2 diabetes at 28 and Crohn's Disease at 32

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How have your conditions affected you? Lupus is exhausting; I need to sleep at least 9 hours a day. Working in New York City as an Office Manager/Jill of All Trades/Marketing Assistant required far more of me than Lupus would allow. It was so refreshing when I got diagnosed with Lupus because I was justified in the pain I felt as a commuter. I didn't think I was old enough to have such back and leg pain from having to stand on the subway. I knew something wasn't quite right. Six years of that pain and exhaustion caused by Lupus led to anxiety which also led to a bad tempered commuter. I felt bad about needing a seat when I looked like a strapping young woman. It was a blessing in disguise when I got laid off from two jobs in the course of two years. Two companies' finanial troubles were my saving grace. Now working as a Nanny and a Tutor, I get the hours of sleep I need and have a significantly lighter commute.

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Adina

Name: Adina

Location: Los Angeles, CA

Age: 30

Diagnosed with Rheumatoid Arthritis at age 29 and Lupus at age 30

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How have your conditions affected you? When I first found out, I went numb; I shut down emotionally and physically. For weeks I couldn't feel, taste or smell. I was in a haze; angry and ashamed. It took me a while to share the news with my family. In the early days of learning to live with this, I was forced to modify my work schedule and social life; I just couldn't keep up. Living with this has changed my lifestyle and how I do things, but not what I do or who I am. It forced me to re-evaluate my priorities and dreams, but never abandon them. It has made me look deeper inside and see what kind of person I am and how I deal with my challenges. I never gave up the things I love; I'm more dedicated to my yoga practice now than ever. I believe it keeps my body healthy and my mind strong. Every day is a test of patience, and I never realized my strength and perseverance until now. I've learned to embrace the challenges and find the beauty in it. This has taught me to be kinder to myself.

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Jess

Name: Jess

Location: Austin, TX

Age: 28

Diagnosed with Crohn's Disease at age 21

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How has your condition impacted you? My condition has changed me in so many ways, but most importantly, it has helped me appreciate all the little things that happen in life. I have learned to cherish the good days and roll with the bad. My condition has also made me more aware of others coping with illnesses. It has made me take a step back and look at my life and be so thankful for everything and everyday that I have.

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