Real Profiles of Rheumatoid ArthritisPhotos © Julie Faulds
Julie “Jules” Faulds
New Albany, Indiana, United States
How long have you lived with RA?
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!
The book that Rheumatoid Arthritis Guy is currently reading – The Sparrow – is a wonderful science fiction read that explores the ideas of relativity and long-distance space travel. As the cast of characters plan their journey to the Alpha Centauri world of Rakhat (they will be traveling inside a meteor!), they describe how time slows down for people moving close to the speed of light. Thus, the trip, which will appear to last over thirty years for people on Earth, will only seem to last seven months for them. (Don’t quote me on the specifics.)
Sometimes, this is what my RA mornings feel like – just a couple of hours for people on the outside, but an eternity for me. As you might have guessed from the title of this post, Rheumatoid Arthritis Guy is currently getting his butt kicked right now. I might be down, but I am definitely not out…even during those morning hours when I am experiencing so much pain and stiffness that I can barely even more (like today).
Every now and then I will have a moment of clarity, in which I tell myself that I wish I could be doing something else with all of this time. I used to feel like such a loser, finally rolling out of bed hours after everyone else. Not any more. I know that during those hours my body is fighting its strongest fight, and that I need to give it the time needs to recover from the latest punches and prepare for the next round of punches.
I used to add to my anxiety, by telling myself that I wished this was over RIGHT NOW! Of course I wouldn’t wish to go through one extra minute of this…but I know that while this flare might not taper as quickly as maybe I would like it to, that it eventually will pass – I just need to give it time.
So this is where I find myself. I hope not to be here long!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Rheumatoid Arthritis Guy spent a large part of this past weekend reading. I have always loved books since I was a little kid, and continue to purchase them at a pace faster than I can read them. (I’m also coming off a couple of waves of new books – when someone from the U.S. comes to visit me and asks what they can bring, I always place a mid-sized order of Amazon books and ship them to their address.)
Come to think of it, reading is a perfect companion for many things, especially for chronic illness. As I tried giving my feet a rest during the past few days, and as my energy levels were extremely low, reading was the perfect activity to keep myself occupied. (I’ll also let you in on a little secret…one of my resolutions for the new year is to read more.)
So I finally got around to a book that has been on my Sony reader for quite some time:Always Looking Up: The Adventures of an Incurable Optimist by Michael J. Fox. This book was reviewed quite a few times within the chronic illness blogging community soon after it was released. Instead of giving it another go round, I’ll instead highlight some of the parts that stood out to me most both for their optimism and for their ability to accept reality.
I was especially impressed by [Lance Armstrong's] strength in facing his own ordeal and his recognition of the situation faced by others. The Lance Armstrong Foundation, although still relatively young, was already living up to its mission statement: “To inspire and empower cancer sufferers and their families under the motto ‘unity is strength, knowledge is power, and attitude is everything.’”
I considered Lance, along with Christopher Reeve, a role model for what I hoped to accomplish. There were both men who has met transforming challenges. Each had taken a negative and turned it into a positive. I didn’t have to let the terms of the disease define me – I could redefine the terms. And maybe in the process get a better deal for me and everyone else in my situation.
For weeks after Chris was hurt, it seemed that the press and public alike would never tire of strained allusions to his Superman persona and the “bitter irony” of it all. But while so many were preoccupied with the “superhero suffers real human tragedy angle”, few anticipated the actual flesh-and-blood hero Christopher Reeve would become. Chris defined hero as “an ordinary individual who finds the strength to persevere and endure.”
Let’s face it, the whole episode, unpleasant though it may have been, was a gift in the same way that I have described Parkinson’s as a gift. You suffer the blow, but you capitalize on the opportunity left in its wake. “The notion of hiding–this is what struck a nerve. Feeling the need to hide symptoms is so key to what patients of all kinds of conditions, but particularly Parkinson’s, have to face. We have to hide–don’t let anybody see, don’t let them think you’re drunk, don’t let them think you’re incapable, don’t let them think you’re unstable, you’re unsteady, you’re flawed, you’re devalued.
As I gained more intimate knowledge of myself, why I did the things I did, what my resentments were, and how I could address them, my fear began to subside. The same holds true for Parkinson’s. I feared it most when I least understood it–the early days, month, and years after I was first diagnosed. It seems strange to say it, but I have to learn to respect Parkinson’s disease. Instead of being reactive, I started being proactive, reading all the materials available, meeting with doctors, surgeons, researchers, and finally, after many years of lingering fear, getting to know fellow Parkinson’s patients and other members of the community. Respecting it, however, doesn’t mean tolerating it. And you can only vanquish an enemy you respect, have fully sized up, and weighed by every possible measure.
Chris Reeve wisely parsed the difference between optimism and hope. Unlike optimism, he said, “Hope is the product of knowledge and the projection of where the knowledge can take us.” If optimism is a happy-go-lucky expectation that the odds are in my favor, that things are likely to break my way, and if hope is an informed optimism, facts converting desire into possibility, then faith is the third leg of the stool. Faith tells me that I’m not alone.
And in case you were wondering – yes, I would recommend reading this book!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Biologics, Other Advancements Have Helped Those With Painful Condition
When MedPage Today contacted Dr. Joan Von Feldt to talk about the changes she’d witnessed in rheumatoid arthritis (RA) care in the past 25 years, she offered one piece of advice:
“I hope, in your article, you reflect the excitement that rheumatologists have in managing this disease, because it’s so much more satisfying,” said Von Feldt, a rheumatologist at the University of Pennsylvania.
In 1984, the outlook for newly diagnosed RA patients was grim: a regimen of often toxic drugs that might slow the onset of crippling pain, but not for very long. Younger women were advised to forget about having children because they probably would be too disabled for the rigors of motherhood. The best outcome for many patients was joint fusion or replacement surgery.
“Our orthopedic surgeon came around to our offices two or three times a week to just kind of check in,” Von Feldt recalled.
Today, although disease flares and progression can’t be prevented entirely, doctors can now tell patients to expect long periods of remission and the availability of many effective, nonsurgical treatment options when their current regimens begin to fail.
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