Young Arthritis: Resources for Juvenile Arthritis & Young Adults Living with Arthritis & Related Disease

Is it wrinkled, gray, and crippled? Or – is it a child, a teenager, a ballet dancer, a professional athlete?

The truth is, it can be any of the above. Arthritis in its different forms can affect all ages and ethnicities.

I personally “don’t look sick” but at age 26 have multiple ongoing health problems, including Rheumatoid Arthritis that I’ve had since around the age of 10. Well-known NBA player Allan Iverson has recently been sidelined due to arthritis in his knee. We had an honoree for our Fall Walk, Deora, who was only 2 years old, and a Jingle Bell Run Honoree, Maddie, who was just 9 years of age. My grandmother has arthritis; but so does a friend of mine in her early 30’s. There is no set age when arthritis can strike, and the reality is, since there are so many different types, it can happen to just about anyone!

That being said, when it does happen to you — especially if you are a child or young adult — you may still feel like you ARE the only one. We’d like you to know that you are NOT alone!!

Read More: http://arthritisfoundationwpa.wordpress.com/2010/01/08/young-arthritis-resources-for-juvenile-arthritis-young-adults-living-with-arthritis-related-disease-ashley-boynes-community-development-director-wpa-chapter/

Rheum to Grow – A Facebook Page for Teens & Young Adults

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50:50

50-50-logoOne of the aspects of living with rheumatoid arthritis that has been most difficult for me to come to terms with has been the roller coaster fluctuations from good to bad. Sometimes these ups and downs take place over the course of weeks and days, and at other times they take place over the course of hours and minutes.

I’m getting a little more used to this, though…and instead of continuing to be annoyed by the unpredictable nature of my illness, I have actually grown to see this variety as something that definitely makes my days not boring. It’s definitely good to plan ahead, but it’s also sort of fun to live for the moment.

Over the past ten days or so, my rheumatoid arthritis has been 50:50. Who would have known it? Just yesterday in a SAT tutoring class the topic that we studied was ratios, as in “to find a ratio, put the number associated with the word of on top and the quantity associated with the word to on the bottom and reduce.” I can already see the test question now:

Rheumatoid Arthritis Guy’s illness is very active from 11pm until 11am. From 11am until 11pm, it is almost unnoticeable that he has rheumatoid arthritis. What is the ratio of his active RA time to his non-active RA time?

Having experienced both extremes, from 1:100 (remission) to 100:1 (extreme flare), I am more than happy to be at 50:50…especially when those active hours take place during the nighttime/morning hours. Sure, the time that I roll out of bed has been drastically pushed back due to morning pain and stiffness…but at the same time, my RA activity during the night has not affected my sleep.

So all in all, I am a happy camper at the moment – even if I do have to meet my rheumatoid arthritis halfway!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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RA|QA Rheumatoid Arthritis Questions & Answers

QuestionAshley asks:

I’m finding that there is very little information available about a combination of drugs I will be starting soon. I posted an entry on my blog about it but I’m having little to no luck. The combination I’m mostly concerned about is Rituxan and Humira. Supposedly its still a somewhat rare combo. Not to mention the methotrexate and Prednisone. I was hoping there was someone else who is on these that could give me some insight.

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Real Profiles Of Rheumatoid Arthritis

If you have already submitted information for a profile and it has not been published yet, please know that you have not been overlooked! The tremendous number of responses that I received, combined with the recent holidays, is causing me to publish them much later than I might have previously estimated. Thanks to everyone who has already submitted a profile – I continue to publish these profiles in the order in which they were received!

If you have not yet submitted a profile but would like to, please do let me know!

Thanks,
RA Guy

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Julie Faulds

Julie Faulds

Real Profiles of Rheumatoid Arthritis
Real-Profile-Faulds-Julie
Photos © Julie Faulds

Name?

Julie “Jules” Faulds

Age?

42

Location?

New Albany, Indiana, United States

How long have you lived with RA?

4 years.

What advice would you give to someone who has just been diagnosed with RA?

First, I would tell anyone who is newly diagnosed to read everything you can about the disease and do not be afraid to ask questions. Second, find your support system- it may not be who you think it is so be open to what you may find. Third- You have a choice to make- you can either live with your disease or you can suffer from your disease. Take time to go through the stages of grieving and then be ready to move on to a new phase of your life. Your outlook and how you approach your disease and treatment makes all of the difference in the world.

Do you use any mobility aids?

Not at this time, but I have a full complement of wrist, knee and ankle braces to use when I need them.

How has living with RA helped to improve your life?

RA has changed my life completely- in a million good ways. Since being diagnosed my husband and I and my parents and I have become even closer. I have stopped being a complete workaholic and slowed down to a manageable workload giving me time to rest when I need rest and time to play outside of work. I have certainly become much more aware that my body is more than my years-long self esteem issues. That in itself has given me a measure of peace. Slowing down has been the best thing I have ever done outside of raising my child.

Do you have any visible signs of RA?

I am fortunate to have very few visible signs. My pinky fingers don’t straighten any longer, and neither they or my thumbs meet my rest of my hands if I try to straighten my hands. My toes are turning outward and I waddle when I walk. The more pain in my hips- the more I look like a Weeble!

Can you please describe some of your favorite coping strategies for living with RA?

First and foremost I count my blessings. With the exception of my RA and Fibromyalgia – I live a VERY blessed life. When I am feeling down, I start a list of the things I am grateful for in my life. I also have a blog where I share the journey of trying to live from a place of gratitude. It makes me really think about the good things in my life when I write it, and when I get comments on it, it helps to know that I am sharing my journey.

Additionally, I try to live from a positive place. Negativity and Drama can take over your life if you let them. It can be very difficult to be positive all the time, but I treat it like a challenge. When you are looking at things from a positive place- the “bad stuff” doesn’t seem so bad! It is hard to be sad/angry when you are smiling.

Can you please describe your current medical (traditional and alternative) treatments?

For the RA I take: 1cc of injectable Methotrexate every Sunday, 50mg Tramadol 3x a day, 1mg Folic Acid (we are upping it to 2 on my next refill) daily, 50mg Enbrel by Injection every Wednesday.

For the Fibro I also take Flexeril every night to help me sleep and I get massages every 8 weeks.

Is there anything else about yourself that you would like to share?

I am a mother, a daughter, a wife, a sister, a friend and an employee. I love to travel-road trips being my husbands and my favorite. I love to read a good book and usually have three or so going at any given time. I enjoy crafts and have found ways to modify my crafting to my abilities. One of my favorite things to do is to raise funds and walk for my causes. I have done 4 Avon Walk For Breast Cancer events (a full marathon each!) and this season two Arthritis Walks. That is a huge thing for someone who is not super athletic. I have also come to love the “sport” of geocaching. I enjoy pro football and baseball- I follow the New England Patriots and the Boston Red Sox like it’s my job.

I am also a bit of a techno-geek. You can find me on Facebook, Twitter, Linked-in and surfing the web at home or via my blackberry. I manage the website for my father’s churches and am my parent’s go-to girl for all things computer related. My favorite holiday is Halloween- it is just about the most fun you can have legally. One of the few things I miss about New England is dressing up on Halloween and spending the day/night in Salem, MA. I am bound and determined to go ghost-hunting one day as I am fascinated by all things “haunted”. I have a dog that I am just nuts about, Harley is my “fur-baby”.

I know that this is a lot of information about who I am- but the message here is; if you take nothing else from this piece- take away that RA cannot take any of these things from me. It can’t change who I am inside. It can make things more difficult for me, but I will find a way to do thing things I love. I only have one chance to live this life and RA or not- I am going to enjoy it!

Julie blogs regularly at An Attitude of Gratitude. She can also be found on Twitter as @CharmedOne1.

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