Let’s Get Physical: Exercising with Arthritis…You Can Do It! – Ashley Boynes, Community Development Director, Western PA Chapter!

One of the most challenging paradoxes for anyone suffering from arthritis, fibromyalgia, or any other similar chronic pain condition, is that physical activity is absolutely vital in maintaining your health, yet sometimes it seems nearly impossible to exercise whenever you are in pain, stiff, and dealing with severe fatigue. When you are sick and sore, getting even 5 minutes of exercise a day let alone the recommended 30-60 seems like a most challenging feat. Every piece of literature, website, or doctor will tell you that staying active and working out can increase your overall wellness, alleviate symptoms, boost immunity, and prevent further damage to the joints. However, while physical activity is essential to our overall health, it isn’t always easy. Many arthritis sufferers, including myself, laugh bitterly to themselves whenever someone says we have to exercise more — because it is so much easier said than done, at times!

I will begrudgingly admit that I personally have been struggling with body-image issues as of late. I’ve gained a few pounds and a little “puffiness” from taking Prednisone and other meds on a daily basis, and due to disabling fatigue, weekly arthritis flares, and not one but 2 chronic autoimmune illnesses that I live with every day, I have not exercised nearly enough. In fact, I’ll make a confession – aside from walking my dog a couple of times per week, I’ve barely exercised at all for the past month. I KNOW it is good for me, and I KNOW I have to. I’ll openly admit that I don’t particularly “like” exercising for the most part – but only because of the pain I endure afterwards, and sometimes during, and the fact that my body is so stiff & weak. I don’t like feeling like I “can’t” do something well. That being said, I do miss being athletic and fit, and I do want to become stronger, healthier, and more toned. I used to love my body – and now, it is the complete opposite! While I’m small & petite, I’ve lost any shred of muscle tone I once had, and it is quite a downer. I want to practice what I – and what we, at the Arthritis Foundation – preach….and that is EXERCISE! Physical activity is key for anyone, but especially those of us who have one or multiple chronic illnesses or disabilities. Also, being overweight, as some people from arthritis are due to being sedentary, can lead to further pressure on the joints, so it is best for people with arthritis to try to maintain a healthy weight. Exercise combined with diet can help you keep up with a healthy weight…and this protects your joints.

So, I decided to brainstorm some activities that those of us suffering from arthritis can do, when we are unable to get in a “regular” workout of cardio or strength training. Of course, there will be days where we physically just cannot do any sort of exercise, and that is acceptable, given the condition and its unpredictability in severity. No one expects you to run a marathon – but if you are able to, kudos to you! We all have different skill levels and ability levels of what we physically are able to do. Not only will this vary from person to person, but also from day to day for each individual living with arthritis or a related condition.

There will be days when some of us may even be well enough to go for a run, or hit the gym. But, what about the majority of our days, where we can’t get in the type of workout that a “typically” healthy person can, but also are feeling “ok” enough to at least do something to stay active and feel better about ourselves? With discipline and a positive mindset, we CAN keep our joints moving, energy levels up, and “fight the flab!”

Of course, walking is an obvious exercise for the arthritis sufferer. While it may be easier some days than others to get around, even going for a short walk down the street or around the block is better than nothing at all. To make your walks more enjoyable, take your dog, walk with a buddy, or listen to music. Or, why not bring a camera and take photos during your journeys? You do not have to go far; you do not have to jog or speed-walk. A normal walk can get the joints moving and blood flowing, which ultimately can aid in bettering our health. To REALLY give your walk some extra “oomph”, you may want to bring light hand weights, or strap on an ankle weight…or even try walking with Nordic poles! Always make sure you are wearing the proper attire and comfortable walking shoes. Make sure that you stretch beforehand, too – even if it is a short jaunt, and wear any braces or supports that may be necessary.

Aside from walking, we’ve mentioned yoga and tai-chi in past blog entries. Both are great ways to stretch and meditate while toning the muscles and increasing flexibility. The Arthritis Foundation recommends tai-chi. If you are really incapacitated, try bed yoga or chair yoga! There are special books and DVD’s about how to exercise through yoga even if you are on bed rest or in a wheelchair, and these may be options for you to look into for when you are having a particularly bad day.

Another fun way to exercise, if you’re willing to make a small investment is the gaming system Wii Fit! Wii Fit offers a variety of exercise options for all ages and skill levels. It also works with you to set and maintain goals. Included are yoga training, strength training, balance training, aerobics, and skill games, but there are other games you can buy and use with the Wii Fit board. Wii Fit gives you tips on improving posture and balance, maintaining a healthy Body Mass Index, and is just a whole lot of fun to play! Another hint for using the television to stay active in your own home is Exercise TV – Comcast OnDemand and other cable packages offer Exercise TV or versions of it. This is nice because you can pick and choose activities that are on YOUR personal ability level and do it all in the comfort of your own home! Unlike exercise DVD’s, these are free and you are not stuck with them if you do not like it. Plus, it offers a wide variety of choices for you to do.

An option that you may also want to try is water aerobics. The Arthritis Foundation offers Aqua Exercise programs, and you can also find similar programs at your local gyms, YMCA’s, or even local schools. Aqua exercise is a great, low-impact option for anyone suffering from any one of the forms of arthritis. It can really tone muscle and, swimming or treading water, like any exercise, are good for your heart. This is important because some studies have shown a link between arthritis and heart disease.

Also good for stretching and toning are resistance bands. (I personally am not very good at using these, but I do recognize their value!) The Arthritis Foundation recommends using these exercise bands, as well, so they are definitely a good option for those of us who may not be able to do free weights. Balance balls are also good to use!

If you are able to, biking is a great exercise for those of us with arthritis – and it is a great way to rehabilitate your knees! Whether it is a stationary bike or you’re going for an actual bike ride outdoors, this is a great way to keep moving & break a sweat!

 

I tried to think outside the box for other activities that you may be able to do, but may never have thought of, as well as some helpful exercise tips. Here are some hints:

 

 

• Do some cleaning around the house. It isn’t what one would think of as typical “exercise” but you ARE staying active and burning calories, while keeping your joints in motion.
• Ballet! Yes, ballet! You can purchase a free-standing or portable ballet barre for your home – or could even have someone make one for you! You can hold on to the barre for balance while practicing stretches and posture. If you are feeling extra-ambitious and want to get out of the house, you could even join a beginner ballet class!
• Shopping! Walking around pushing a grocery cart, just like doing household chores, can burn calories AND keep you moving. Also, if you enjoy shopping and want exercise, why not join a mall walking club?
• Bake a cake for a neighbor and hand-deliver it! Baking keeps your hands busy, and a nice walk while doing a good deed boosts your spirits and gets the blood flowing!
• Watch TV…..WHILE doing leg lifts, flexing muscles, or lifting very light hand weights!
• Go for a walking tour through your neighborhood or your city. You may learn to appreciate from a new perspective! Many cities offer landmark tours, garden tours, and sightseeing tours all on foot!
• Waltz! Why not try a ballroom dancing class with a spouse or loved one? Things like Latin dancing or Zumba may be difficult but some slower options may be great for you to try!
• Walk for a cause! Sign up for fundraising walks and 5K’s in your area that benefit a charity or a cause…..(such as our Jingle Bell Run!)
• Play with your children or grandchildren….or, a friend’s kids….this will put a smile on your face, while keeping you active!
• Find a workout buddy – some people value the solitude of “alone time” when working out, but others find that exercising with a friend makes it so much easier!

Again, I know from a personal standpoint that sometimes it is “easier said than done” to exercise when dealing with a chronic illness or physical disability, and that a person who has never dealt with these types of issues could never fully understand. Therefore, never do more than your body will allow, and always consult with a doctor before starting any type of exercise program. Do not push yourself, but even if it isn’t every single day, try to get at least some exercise in a few times per week! Not only are you strengthening and toning your muscles, but exercise also raises endorphins which alleviate stress and make you feel happy….and what could be better than that??

 

 

Please feel free to comment! We would love to hear your suggestions for exercising with arthritis. I’m personally going to set a goal to exercise at least 3-4 days a week, even if it is something as seemingly simple as walking my dog. Hopefully, you will join me in this mission for better fitness and overall wellness! I’d love to hear your stories!

For more information on the importance of physical activity, please listen to Episode 2 of Arthritis Radio with Jane Brandenstein….”Let’s Get Physical.” Also, if you are interested in signing up for our December 12^th Jingle Bell Run (a 5K Walk & Run benefiting the Arthritis Foundation, Western PA Chapter) click here for more info! For more info on our programs including Land & Water Exercise for Arthritis, click here.

 

Thanks for reading, and stay well!

-  Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

Voted “Best Blogger in Pittsburgh”

 

 

 

Congratulations, Jane: An AFWPA Hero Wins National Addie Thomas Service Award – Ashley Boynes, Community Development Director, WPA Chapter

Every year the American College of Rheumatology holds a national conference. This year, the annual meeting was held in Philadelphia during the 3^rd week of October. The ACR is a scientific meeting featuring keynote speakers, research presentations, and more. They also recognize worthy individuals in different fields related to arthritis and rheumatic disease, and give out a variety of awards to these deserving individuals, who hail from all over our great nation.

                                                                    During the Saturday evening kickoff of this year’s conference, our very own Jane Brandenstein was awarded the distinguished ARHP Addie Thomas Service Award.

This award recognizes individuals who have been an active volunteer with local, regional and even national arthritis-related activities. Jane Brandenstein, of Pittsburgh, Pennsylvania, currently sits on the Arthritis Foundation of Western Pennsylvania’s Board of Directors as Vice-Chair and, next year, will become the Chairperson of the Board.

 Jane has an extensive history of volunteering and service. She genuinely flourishes as she helps others and spreads arthritis awareness. She is particularly concerned with promoting the importance of exercise, physical activity, and overall wellness.

 Jane has been a member of the American Physical Therapy Association since 1965 and the Association of Rheumatology Health Professionals since the 1980’s. She has been a valued member of The Arthritis Foundation, Western PA Chapter, since 1982. Additionally, she has been chosen as a part of the national Arthritis Foundation “Flying Squad” Training Group, where she teaches exercise training to arthritis instructors who offer helpful classes to those suffering from arthritis. Jane is also a member of the US Power Squadrons, where she teaches safe boating classes. She has given presentations for the Annual Scientific Meeting, the Rehabilitation Training Network, the Scleroderma Foundation National Meeting, PSS Support Groups, and University of Pittsburgh Physical Therapy Classes.

 Additionally, she is involved with the Arthritis Foundation Exercise Program, as well as the Arthritis Foundation Self-Help Program.  She not only leads these programs, but teaches new instructors and trainers on a local and national level.  Jane also serves as a member of the Speaker’s Bureau, traveling the Western Pennsylvania region speaking on behalf of the Arthritis Foundation, WPA Chapter.  Her presentation of “Arthritis 101” is the foundation’s most popular.

Jane has been certified as an Arthritis Foundation leader and trainer for the Arthritis Foundation Exercise and Self-Help Programs. Under Jane’s tutelage, hundreds of program leaders currently teach these classes in local and regional communities, helping individuals of all ages lead better lives despite the disabling effects of arthritis. Jane is an ambassador for the Arthritis Foundation through her countless speaking engagements. Her help with the chapter’s “Family Days” with Children’s Hospital has helped bring awareness to our “Kid’s Get Arthritis, Too” program and has helped families and children deal with this disease. She has demonstrated a commitment to many other organizations in the areas of health, wellness and advocacy for physical activity.

In addition to having her plate full with all of the above volunteer and outreach efforts, Jane also was featured as one of our inaugural Arthritis Radio guests. She is a close friend of our chapter’s.  She’s certainly gone a step above and beyond in her personal and professional development by giving back and by being an inspiration to the community that she serves. Jane cares about the causes that are close to her heart and makes sure to create awareness by reaching out to the community and educating others. Her passion reaches both near and far, as she strives to provide outreach on both local and national levels, for all ages. She cares about helping others, and about teaching people to help themselves. Jane is dedicated to the importance of physical activity and hopes to educate others on this importance so that they can improve upon the quality of their lives. Jane is a woman who is wholeheartedly dedicated to the organizations that she belongs to, and she is devoted to the people who she serves. Jane is an inspiration to all whose lives she touches.

We congratulate her on her successes and in winning the esteemed Addie Thomas Service Award. Her national recognition has been well-earned. Please join us in congratulating our very own Jane Bradenstein on earning national acknowledgment for all of her hard work through the years. We appreciate it and are proud that she is a part of the AFWPA Family!

To see Jane’s photo and “blurb” in the online American College of Rheumatology 2009 Annual Meeting Program, click here

To listen to Jane’s podcast on the importance of physical activity click: ARTHRITIS RADIO.

To learn more about the American College of Rheumatology Annual Conference click here.

Thanks for reading, and stay well!

 

- Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

  

Introducing our 2009 Jingle Bell Run Honoree! Maddie Genest: A 9-Year-Old Living Well with Arthritis! – Ashley Boynes, Community Development Director, WPA Chapter

“For three days in a row, she could barely make it down the steps of our 2-story home. As I watched her come down the stairs, she was hunched over, and I thought, ‘She looks like an 80-year-old arthritic woman! She was taking one step at a time, moving slowly, and dragging her feet. Then, she didn’t have the strength to button up her pants, and her hands looked bent. This is when I knew something was wrong.”

It turns out that Mrs. Genest’s instincts were correct. There was, in fact, something wrong with her child. What started in November of 2008 as her daughter, Maddie, having a case of autoimmune psoriasis on her scalp later resulted in a huge arthritic flare in the March of 2009 – a flare that turned out to be Juvenile Rheumatoid Arthritis.

Maddie Genest was diagnosed with JRA one week before her 9^th birthday, this past March, by the renowned Dr. Rosen at Children’s Hospital of Pittsburgh. For the past 7 months, Maddie has tried multiple treatments ranging from Naproxen, to Prednisone, to Enbrel, and now, Remacaid. However, this brave little girl, who hails from Erie, Pennsylvania, has not let the diagnosis or treatments hold her back or bog her down.

When approached to be the honoree for our 2009 Jingle Bell Run, Maddie did not hesitate. Her mother says that Maddie claims “she has arthritis for a reason” and that she hoped that by being our honoree she would help another kid – or better yet, a few others – who are going through the same type of illness and may be scared. This positive attitude has been the norm throughout the course of this illness, so far.

While Mrs. Genest notes that, naturally, Maddie has her “bad” days, she says that her daughter maintains a mostly positive attitude about living with this chronic illness. While she may not be able to do the monkey bars like some of the other kids on the playground, she’s taken up swimming at the local YMCA, and also enjoys indoor soccer when she is feeling well enough to play, as well as singing, hanging out with friends, and “normal girl things” like shopping.

She’s also had a hand in her treatment. Maddie tried Enbrel injections for a period of time, even giving herself the shots at 9-years-old, but, found them to eventually be too painful. Instead of giving up, it was she who decided upon Remacaid – an intravenous therapy – in Dr. Rosen’s office at Children’s Hospital. Mrs. Genest says that it was Maddie asking the questions: how long will it take, what’s an IV? So, at her discretion, she decided with her parents and Dr. Rosen to try the Remacaid treatments and has completed her first round successfully.
Not all children would be so adaptable. Maddie learned a lot about Juvenile Arthritis at Camp JRA this past summer. She loved it, and enjoyed spending the time with children to whom she could relate, and vice versa.

While every day isn’t rosy, Maddie is sure not to walk around life with a cloud hanging over her head. Her school – a Montessori school – has went above & beyond in making adaptations for Maddie without  singling her out as different from the other children. For instance – her class no longer sits on the floor for “circle time” – to make it easier on Maddie. Also, during long testing such as the PSSA’s, Maddie has the option to have an aide fill in the little circles for her if her hands begin to hurt. Mrs. Genest acknowledges gratitude for these special accommodations that allow Maddie to still feel like a normal child, while getting the adaptations that she needs.

One of the hurdles that Maddie and her family faced early on in her diagnosis was the fact that so many are ignorant to the fact that children can get arthritis, too. She hopes that by being our Honoree for the Jingle Bell Run she can spread awareness to people of all ages that arthritis can affect children her age and even younger.

Even though Maddie’s joints may ache, and her grip strength is now 2x weaker than the average 9-year-old, in our minds and in the hearts of her family, Maddie is far stronger than many people her age…and maybe even three times her age. She deals with the burden of a chronic and disabling illness with charm and grace, serving as a positive and inspirational role model for anyone – of any age – who suffers from arthritis or related disease. We thank her, and her parents, for being a part of our upcoming Jingle Bell Run. We are proud to salute her as she continues to fight this beautiful battle.

 

- Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

Food for Thought: Healing From Within…A Positive Diet & Positive Thinking for Better Health – David Martin, Executive Director, WPA Chapter

“The Doctor of the future will give no medicine,
but will interest his patient in the care of the human frame,
in diet and the cause and prevention of disease.”
-Thomas Edison

That quote is from my recent Arthritis Radio guest’s website … Janet McKee, a board certified Holistic Health Counselor.  Here is an excerpt from my intro to that show:

I don’t know if you’ve seen the iphone commercials – where the tag line is “we have an app for that” … want to order a pizza – we have an app for that … need directions … need to book a hotel – we have an app for that – amazing technology.  It has changed society as we know it … something else that has changed are the levels of stress and anxiety … depression, obesity … overall wellness … are you stressed – we have a pill for that … depressed  - we have a pill for that – overweight, have pain – we have a pill for that … everything is quick – never enough time and one area that really suffers is what we eat and consume.  Drive-throughs, coffee shops, energy drinks, processed foods, vending machines, microwaves – this has changed society too… and has changed our overall wellness.

I used to think my father was a “fanatic” over what I called his “health foods” … his attention to what he ate and how much of it always resulted in some good-natured jokes as the rest of us stood around with our quarter pounders … he was right.  He was right and is now the healthiest person in my family.  A family that has Rheumatoid Arthritis, Psoriatic Arthritis, JRA, Fibromyalgia, Lupus, auto immune disease,  and more… is there a connection?  If you ask Janet Mckee … you would get an enthusiastic yes!

Considering the pills and the drinks and the processed and fast food we consume — what we should be considering what is on the end of our fork.

Please let me know what you think of the interview on Arthritis Radio. Leave a comment and your personal story.  I should add – Are we suggesting you drop your meds and eat “vegan”?  No… but a better diet, a diet and lifestyle that suits our particular bodies can only lead to feeling better.

On part 3 of the interview we also touch on the power of your mind.  I recently read a book entitled “You Can Heal Your Life” by author Louise Hay.  She has a DVD of the same name and the potential that exists of how our bodies and life can change depending on our thoughts and outlook is simply astounding.  How many times have we awoken to a gray, rainy day not having received enough sleep, dreading going to work, having too much on our plate, not feeling 100% and not looking forward to the day ahead.  We plant the seeds for a miserable day – and that is what we get…  What we expected from the moment we opened our eyes.  What would have happened if we had greeted the day being grateful, thankful for the rain and our work day ahead and thoughts of how we expected to feel good.  A different outcome, I suspect.  Louise Hay has been quoted talking about “waking up and thanking the bed for a night’s sleep”!  Now that is grateful.  The idea has been around for centuries.  I first heard of it as a child and came across the book, “The Power of Positive Thinking” by Norman Vincent Peale.  It’s been most recently brought back into popular culture through books like Louise Hay’s and “The Secret”.  Organizations like Abraham Hicks and best-selling authors like Chicken Soup for the Soul’s Jack Canfield and Michael Beckwith have promoted positive thought for a better life. Our thoughts, expectations, imaginations and life-outlook can have an impacting effect on our health and how we feel.  It’s a journey worth taking.

A better diet, positive thoughts, feeling better… sound good?

Check out the interview! To listen to Arthritis Radio Episode 11: Parts I, II, and III - please visit http://arthritisradio.podbean.com or simply search Arthritis Radio in the iTunes store to download it as a free podcast!

We have recently posted another AFWPA “Rheum for Wellness” blog entry about Janet McKee and the “food for healing” aspect of this topic.

View Ashley’s entry, “Food for Thought: Healing from Within” HERE.

To learn more about Janet McKee, holistic health counselor and drugless practitioner, please visit her website at http://www.janetmckee.com

Thank you, and be well!

- David Martin

Executive Director

Western Pennsylvania Chapter

Fresh, New Look to AFWPA Blog!

Well you may have noticed the new logo and name when logging on today, and we hope you like it!  As you know, we’re all about wellness, and we thought it was about time our blog get a new look to match that feeling.  I’ve been here for almost a year now, and I can’t believe how much our online community has grown and how many friends we’ve met online through our blog, AF Radio, and Twitter.  It’s so nice to hear from all of you and I love logging on and reading the comments that you leave on our various sites.  Keep checking back for more wellness tips and updates from AFWPA.  We love having you in our neighborhood!

Lisa Mauti

Senior Director of Community Development

Food for Thought: Healing from Within – Ashley Boynes, Community Development Director, WPA Chapter

“Mind, Body, Spirit” is not ONLY an e-newsletter provided to you by the Arthritis Foundation – it is also an idea that is embodied by living a healthful lifestyle of wellness.

Did you know that what nourishes us can also destroy us? Did you know that what is healthy for one person may not be for the next? These ideas and many more were discussed today during an interview with Janet McKee, HCC, AADP – a certified holistic health counselor and drugless practitioner. You will soon be able to hear this interview in its entirety on Arthritis Radio or as an iTunes podcast, but for now, I would like to go over some of the concepts that Executive Director David Martin and myself touched upon with Janet during this fascinating afternoon.

Janet says that it can be easy AND enjoyable to take control of your own health and to live a vibrant life. She claims that we can eat foods that are delicious AND nutritious, and warns against many American “staples” such as fast food, junk food, processed foods, sugars, and fatty meats. Her mission to heal is not only a professional one, but is also a part of her personal journey. Janet herself suffers from an autoimmune digestive disorder that, like arthritis, is inflammation-based. In fact, she claims that many diseases – from rheumatoid arthritis to cancer – are due to inflammation and an out-of-balance immune system. This is where a life overhaul can help patients get to the healthy point of their lives where so many hope to be.

While Ms. McKee acknowledged how lucky we are in America, and particularly here in Pittsburgh, to have such a forward health care system and such scientifically advanced medicine, she also makes note of the fact that traditional medicine isn’t our only choice, and wants people to know that they do have an alternate option.

While she stressed the importance of seeking (traditional) medical attention when need be, and noted that for some conditions, it is absolutely necessary to go, and stay, on medications, she says that by eating healthy and feeding our body the right things, we can avoid getting to this point altogether. Also, even if you are at the point where you have to be on 1 or 2 meds, this healthy and nutritious lifestyle can only assist in the healing process and can help you achieve your goal of overall health and wellness. You may want to ask your doctor if seeking out a nutritionist or health counselor is right for you!

Janet says that there are two “types” of food: primary and secondary. Primary food isn’t what you’d think – it is the less “tangible” things that we feed our body – stress, work, social life, spirituality, etc. Secondary food is what we typically consider, food. Lowering stress, increasing mental and emotional wellness, finding work that we enjoy, finding hobbies that we enjoy, finding something we believe in (whether religious or seeking spirituality on a golf course), having a support system, finding positive energy and letting go of negative emotional blockages to healing are all “primary” foods that we “feed” our body are just as important as what physically goes into our body. The types of regular (“secondary”) foods that go into our body are important because Janet says that they feed us on even a very cellular level, helping to balance the pH of our blood, and thus allowing our immune system (and all systems of the body) to function properly, and naturally.

Janet says to boost immunity and decrease inflammation, we need to do away with overly fatty foods, most dairy and meats, processed sugars, etc. Healthy additions to our diet should be leafy greens, whole fruits and vegetables, legumes like peas and beans, healthy whole grains such as quinoa, and occasionally wild-caught cold fish. She encourages everything to be whole, and organic, and stresses the importance of phyto-nutrients (nutrients that are plant-based) and antioxidants. She recommends cherries for arthritis and also spices and herbs such as turmeric and ginger. Janet, who was a huge advocate of red grapes in any form, says that it is okay to enjoy an occasional glass of (organic) red wine in moderation, but that anyone who is in the early stages of trying to “heal” should avoid alcohol altogether.

Another helpful hint? Walnuts. She says that walnuts also help to combat inflammation and aid with the immune system, therefore being a perfect super-food for an arthritis sufferer. We also need to be certain to stay hydrated. Water is essential for life! For instance, we should drink a full glass of water upon wakening – BEFORE our morning coffee. As we sleep, our body becomes dehydrated and then may therefore not function properly until we hydrate.  Also be sure to drink water throughout the day to cleanse and hydrate. By the way, you CAN enjoy a cup of morning coffee – but, like anything, do so in moderation. Caffeine breeds acidity which can send our blood (and immune system) “out of whack.” However, it is high in antioxidants, so if you try not to overdo it, and be sure not to add too much sugar or milk, it is okay to consume now and then, especially if it brings you comfort or joy. She recommends green tea as an alternative to coffee. Plain, hot green tea is an excellent drink of choice for arthritis sufferers – packed with antioxidants and healing properties. She says that peppermint tea is also a great choice.

An interesting concept that kept coming up with Janet was “enjoyment” and “happiness.” She seems to have an attitude that you should enjoy eating. Do not focus on what you CANNOT eat, but what you CAN eat.  She says you should do things in life that make you happy – personally, professionally, and health-wise. She also encourages living as natural a life as possible – from the way you eat, to the way you drink, live, shop, and sleep.

Janet McKee is truly a “crusader” for nutrition and overall wellness. She had so many interesting things to say, that these are only the beginning! You will learn much more from this week’s Arthritis Radio broadcast, which will be up within the next few days!

Our Arthritis Radio interview with Ms. McKee will be up soon, and you can hear more in detail from this lovely lady herself, but you can always go back and peruse our past episodes on topics such as Tai Chi, fibromyalgia, Juvenile Arthritis, exercise, and more! For now, feel free to check out Janet’s website at www.janetmckee.com and be sure to subscribe to Arthritis Radio free weekly podcast on iTunes here: http://bit.ly/uiZw3

If this blog has inspired you to “get cooking”, our inaugural podcast Episode 1 with “Cooking with Arthritis” author, Melinda Winner can be heard here or, you can visit her website, here. To read a past blog on how the gluten-free diet can be healthy for arthritis, click here.

Also, be sure to browse our past blogs and Arthritis Radio episodes for much more useful information on holistic/alternative treatments, and diet & arthritis!

Update: Read our Executive Director, David Martin’s blog on this topic here!

Please share your comments on how food or a natural, holistic  lifestyle of wellness for mind, body, and spirit has transformed your life! We enjoy feedback, and reading about your triumphs, struggles, and personal stories about surviving with arthritis and related conditions!

Thanks for reading, and stay well!

- Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

Hitting a Homerun in the Game of Life: A Personal Essay on Juvenile Arthritis – Ashley Boynes, Community Development Director, WPA Chapter

The following is an essay that I wrote during college. It is a very personal story, and one that I thought would be appropriate to share with the AFWPA audience. My Mom was clearing out our old desktop computer, and found this file saved. She sent it to me, and I thought it could be an inspiration for parents of children with JRA, or for teens and young adults suffering from Juvenile Arthritis, Fibromyalgia, or any other chronic condition. At the time, I’d thought of submitting the essay to Arthritis Today, but I never got around to it. Now, I see why I saved it. Not only was it an “A” paper, but it is a story that I wish to share with all of you, especially those of you who are young people suffering from arthritis or similar conditions. It was written in early 2005, by me. I hope that you all will enjoy:

—

A Homerun in the Game of Life by Ashley Boynes

“Run, Ashley!! Come on!” I shaded my eyes with one hand and squinted into the sun while rounding the base, with my heart pounding and the adrenaline flowing. Through the dust from the field, I saw my grandpap and softball coach, “Bups”, encouraging me to round the bases to third, and potentially home. I had made it to first fast as a jet, but when I tried to progress, I felt stuck. My whole body was shutting down and I knew I could not run anymore. Crying, I yelled out “I want to! I’m trying! Help me! Let me run!” I looked around – the right fielder still had not retrieved the ball, I had whacked it so far. My fellow teammates were cheering me on, and I saw my parents, brother, and best friend Nicole in the stands.

“What is happening?” I wondered as I eventually got to second, “How can I make it THIS far and now I cannot make it home?” I surveyed the scene again. I knew I had hit a homerun, but why I could not actually run was beyond me. Each movement was harder than the last.  The pain got worse. I saw third base, and then home, but I just could not move. I felt like the Tin Man from “Wizard of Oz”, rusty and in need of my oil can, except, in this case, the oil was nowhere to be found.

“Ashley!” I woke up to the sound of my Mom waking me for class. I sighed, and saw my old softball and cheerleading trophies atop the wardrobe. Petting my dog, I then looked at the stack of pill bottles next to the bed, stacked on top of my notebooks, sighing again and recalling the dream. I grabbed my journal and a cup of tea. Another day was about to begin, and I was hoping it was a “good” day…

I held my first bat in my hands at the tender age of 4 – it may have been earlier, but that I cannot recall. All I know is that, from that moment on, I was in love – with softball, that is. My grandpap taught me all there was to know about the sport. I played from t-ball all the way up until “real” softball. Slow pitch, fast pitch, and anything in-between — where there was a field, I was playing, whether it was on an organized team or for fun with my family. You could not have paid me to ditch the glove and go play with Barbies…it just wasn’t my style. I was a Barbie girl, too, but given the choice – softball always came first, no questions asked. It was an understatement to say that my passion definitely lay with softball. Even before church or after Sunday dinners, I could be found outside practicing. It did not matter if I was playing catch with my family, a pick-up game of ball with my male cousins, or headed to the batting cages – as long as I was playing, I was happy. I remember that I was number 9, and insisted I get that number every year. On an All-Stars team, I was handed number 20 and felt jinxed – but made it through the tournament unscathed (except for the bitterness of not having “my” number.) I went through many different coaches, different teams, and win or lose, it didn’t matter. I loved the thrill of victory, the agony of defeat. I loved the crack of the bat against the ball, I loved to feel the adrenaline pumping through my competitive veins, and I loved to strike out the opposing batter. I liked that I could hit further and field better than many of the boys I knew. I liked that I had something special. I thought for sure I would play in high school, and maybe even college. I had always wanted to be a cheerleader, too, and eventually did that, as well…but softball was my main priority.

That was until I was told I was not allowed to play. At age 12, already preparing to play on the JV/Varsity teams in a couple of years, I was diagnosed with a common but little known condition called JRA. At age 10, I’d started having chronic aches and pains. My pediatrician at the time said they were “growing pains” and dismissed it as, well, child’s play. I was basically labeled a chronic complainer, and a hypochondriac – not only by her, but by those that were close to me and just would not bring themselves to voice it aloud. That almost hurt worse than the pain itself! My shoulders, ankles, knees, and wrists just ached and ached. I went to the hospital multiple times for ankle X-Rays that showed no fractures, no sprains. My neck would ache, and, even at that young age, I would complain of back problems. Finally, it got to the point where the aches were hard to withstand any longer and it became evident that the problem was not one to simply dismiss. The pains were hard to explain, and from my knowledge, abnormal, and I insisted something was wrong. When something is wrong with your body – even at the age of 10 – you know. My parents, probably just as frustrated with the situation as I was, took me to a specialist, and I was finally diagnosed with Juvenile Rheumatoid Arthritis. The rheumatologist told me that I had a rare disorder affecting my joint, commonly known as JRA. There are two main types, pauciarticular (few joints) and polyarticular (many joints.)  I was diagnosed with polyarticular, meaning that it affects 5 or more joints at any given time in my body. While my case was “medium” on the mild to severe spectrum, it was not only a physical blow, but also an emotional one. While I could deal with the aches, pains, swelling, and stiffness – even the ensuing knee surgery and fibromyalgia – I could not deal with having limited ability to do what I loved best – play softball.

At a time when I was just discovering myself, I was also dealing with a chronic illness that usually affected people two or even three times my age. Not only was I dealing with arthritis, but I was dealing with it along with the usual middle school drama of stuffed bras, best friend feuds, and 2 day relationships. At certain times over the past 10 years, I’ve had to take up to 6 pills a day. Imagine going to a sleepover in middle school and having to pop 3 pills before you head to sleep! I was embarrassed, and felt like the odd one out. People made fun of me for walking with a limp and many people still thought I was “faking,” especially because I got excused tardies – mornings were often difficult due to the stiffness. Many people looked at me, with my fashionable wardrobe and my Britney Spears hairstyle, and thought that nothing was wrong. Always smiling to hide the pain, they never seemed to take my illness very seriously.  It is not an illness that is contagious, or one that usually shows on the outside; but it is an illness that hurts – both the soul and the body.

While I still tried to cheer and play softball for awhile, my body was not up to it and I knew I had to stop. I do not like to use the word “quit,” as I am not a quitter, but I simply stopped. My pain was not worth the effort, and I felt like I had lost some of my talent. I could not handle being “not good enough,” second best, or physically incapable, to play the sports I loved and do the things I loved to do. I always wanted to be the best, and to be as good as I once was. Many people with an illness, especially a physically dehabilitating one, sink into a deep depression. I was teetering on that emotional apex and was not sure which way I was headed.

Luckily, I took the high road and turned to writing. Always fond of it, I never had made the time or effort to develop my newly rediscovered skill. I got involved with the school newspaper and later the school yearbook. I wrote poetry and song lyrics on the side, and started to keep a journal. I found myself looking forward to essay contests and writing assignments in English class. I turned my pain and emotional uncertainty into words. I found that writing was art, and a great form of self-expression.

As time and experience would have it, I became Entertainment Editor of my high school newspaper, and Editor-in-Chief of the Yearbook. I graduated high school in 2002 with Honors and went to college for Marketing and Music Business, and that was that – my writing career, in my mind, was done. I wanted to move to NYC and do PR in the entertainment industry, or become a artist manager and lyricist. At the time, writing was something I was good at and somewhat of a hobby, but I realized it as neither my passion nor my destiny. I was after bigger and better things, or so I thought.

College was a wonderful experience, but it wasn’t enough to keep me completely happy. I began to feel down because some of my medications made me gain some weight, I was feeling a bit homesick, and then I was dealt another blow: during my sophomore year of college, I woke up with half of my face paralyzed. Bell’s Palsy is an unexplainable illness that strikes out of nowhere, paralyzing half of the patient’s face, and causing it to droop. Not only did I look like a stroke victim, but I also had to leave my closest friends behind at college and move home only to be placed on bed rest – and more medications. I gained 30 lbs. from the steroid I was on to cure it, and my face was not getting any better. Being someone who valued appearance and based a lot of my self-worth on looks, I went into an emotional downward spiral. The doctors said it was nothing to do with my arthritis, and so I was even more angry that I was cursed with not one, but two, very rare illnesses for somebody of my age. I was angry, I was lonely, and I was dissatisfied with life. One day, my grandparents took me to Barnes & Noble to pick out some books. I could not work, I could not go to school, so up until that point, I spent most of my days watching movies or television. However, after our bookstore trip, I started to get back into reading and writing. Then I got a puppy, my guardian angel named Lucy, who inspired me to start keeping a journal again as I raised her and documented the progress with writings and photos. I eventually recovered from the Bell’s Palsy and life went back to normal – except for an added bonus – I was writing again! I also learned that there were people who loved you even when your looks were damaged or faded. It was a lesson I took with me in life. I started drawing my self-confidence more from my brains and my talents, and less from outward physical appearances. I came into my own and cared less what small-minded people would think. I could have spent those 3 or 4 months in a funk, but I snapped myself out of it after awhile.

When time came to go back to school in the fall of 2004, I changed my major to English and became a columnist, writer, and advertising designer for the college newspaper, where I also sat on the Executive Board. Still in college to this day, I plan to graduate in 2007 from PITT with a B.A. in Humanities, focusing on English Writing, English Literature, and Communications. I do freelance writing, am an Entertainment Columnist for a website, review local bands, and have been locally published a few times. Though I’d like to get into the Public Relations field, my main goal in life is to write. I want to be a columnist, and I want to publish a book.

My mind is back on track, and my health is up and down as always. In the summer of 2005, I was diagnosed  by one doctor with Fibromyalgia – a chronic pain and fatigue syndrome also linked with other illnesses like Arthritis and Depression. Although I spent most of the fall of 2005 struggling with it, I have emotionally beat that, too, and venting through writing played no small part in that progress! In fact, I credit writing for helping me through a lot – illnesses, self-esteem issues, bad relationships, and trouble with friends.

My arthritis has been okay. JRA usually goes into remission and comes back later in life when “most” people start to develop arthritis. Mine has not yet completely gone into remission, and might not ever do so, but I am okay with that. I am making do with the situation. I had to stop taking one of my arthritis pills because it was causing damage to my eyesight, but I replaced it with a weekly injection that has been working wonders for the pain. I keep busy, and try not to dwell on my illnesses, so that they become mere inconveniences and not complete roadblocks. I am often times genuinely shocked when people express sympathy or pity, or tell me how “strong” I am. When you are dealt certain cards, you play the hand you have been given and that is the extent of what I feel that I did. Instead of choosing to become depressed and listless, I have dealt with each issue as it comes and have tried to make the best of it, along the way discovering my greatest loves – Lucy, and writing.

I like to think that my arthritis and other health problems were blessings in disguise. I also like to believe that there are reasons for unanswered prayers. I think we learn a lesson from all our trials and tribulations in this life.  If I had spent all of my time during my younger years focused on sports, I am not certain I would have developed my talent and love for writing and the English language. My life might be on a totally different path, and I may have been missing out on what is now my greatest passion – writing. Sure, there are times where I miss softball, and I still love the crack of the ball against the bat. There are also times where I get down about my aches and pains and wish I could be a “normal” 22 year old. Sometimes I get frustrated when my illnesses prevent me from going out or playing with my dog, and I, at times, get resentful that I am a bit behind in school. But I know, deep down inside, that there is a plan for all of us. It could always be worse, as my Mom always says, and I believe that is true. Without this bump in the road, I may not be on my path to success. And although my parents, grandparents, friends, and family have greatly helped me through it all, my writing has been my saving grace. In life there will always be obstacles, and an illness should never hold you back from pushing on through to achieve your dreams. Arthritis can stop me from playing ball, but it cannot stop me from hitting a homerun in the game of life.

—-

I am now 26 years old. Since the time I have written the above essay, I have turned my love for writing – and my condition (JRA) into a career that I cherish, at the Arthritis Foundation.

In addition to the aforementioned conditions, last year I was unfortunately diagnosed with Celiac Disease and have been largely unresponsive to any treatments thus far, and also have neurological complications from the Celiac – which is yet another autoimmune disorder. However, while it has affected my life in some ways over the past year, I’ve done the best that I can do. I’ve stayed strong, optimistic, and positive, and am thankful for a wonderful support system all around me. Life deals us many blows, but we do not have to let them define us.

As you can see, my goals have changed. I no longer play softball, which was a heartbreaker…but, I do hope to be able to become more physically active again once I get my health under control. I do still love writing, and feel blessed that my job affords me to do so. I also still freelance, write columns for 3 other websites, and intend to start my own personal blog. I want to publish a novel someday and have started a manuscript. I still write songs, and poems, and have even taken an interest in children’s books.

In addition to Lucy, I now have a pug named Maggie and a parakeet named Gus, who also have been by my side through a lot! I have a wonderful family, the most supporting and loving boyfriend in the world, understanding coworkers, and amazing friends.
So I want to encourage you all to do as I do, and even when life gets you down, try to remember all of the GOOD things that you have going on — sometimes, it is all that gets you by.

I also want you to know that dreams can change. I never encourage anyone to quit or give up, but sometimes, we have to listen to our bodies. Sometimes, when one door closes, we are so focused on it being closed, that we cannot see the new doors open. My “sports” door closed, and my “writing” door opened; allowing me to cultivate the person that I have become! I hope you will do the same, and follow your dreams, even if you are living with chronic illness!

Our chapter really wants to increase awareness of JRA. It is the 6th most common childhood disease, yet many people do not know that kids get arthritis, too. Last spring, we held a JA Awareness “Family Day” at Kennywood Park, and our recent Fall Arthritis Walk & Wellness Day at Idlewild Park featured a 2-year-old honorree, Deora Matvey, who suffers from Juvenile Arthritis. Our upcoming Jingle Bell Run features a child honoree named Maddie Genest, who is 9 years old and dealing with JRA. The Jingle Bell Run is on December 12th in the North Shore of Pittsburgh. On that same day, we will host a JRA Family Day & Awareness Session Holiday Party at the Carnegie Science Center in collaboration with Children’s Hospital of Pittsburgh. Please come, and learn more about Juvenile Arthritis.

Thank you for reading! If you, or a child or young adult that you know suffer from Juvenile Arthritis, please do not hesitate to contact me! I will answer any questions about my personal experiences and would love to offer support in any way. This is a cause close to our hearts here at the Arthritis Foundation of Western PA. Not only do I suffer from this illness, but our Executive Director, David Martin, has a young daughter who was also diagnosed with Juvenile Arthritis.  She, along with children like Deora and Maddie, are an inspiration, showing us all how to be strong….life does go on!

Please feel free to share your thoughts or stories! We love getting feedback & reading your comments! What will YOUR “Home Run” Be???

To learn more about Juvenile Arthritis: click here or here

To learn more about our Jingle Bell Run: click here!

To hear a past Arthritis Radio podcast on JRA: click here!

Click here to donate now!

Also, be sure to visit: kidsgetarthritistoo.ning.com

Be well,

- Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

Alternatives to Arthritis: A Look at Alternative Medicine & Holistic Therapies for Wellness – Ashley Boynes, Community Development Director, WPA Chapter

Sometimes, following a strictly traditional medical regime simply isn’t enough. While it is always of utmost importance to follow the advice of your medical doctor or specialist, you may want to consider adding some alternative methods if you aren’t responding to medications and traditional treatments alone. If arthritis or another chronic disease is taking away your life, it is time to try and find a remedy that works for YOU….no matter how far-fetched it may seem!

Future blogs will  feature different types of “alternative” treatments individually and more in-depth, but today we will broadly overview the spectrum of alterative treatments available, touching upon a few but saving further elaborations for future entries. I must, however, stress the importance of consulting with your doctor before trying any of these treatments, though. As harmless as they may seem, each person’s body is different and each individual reacts differently to treatments — whether a drug or a natural remedy.

“Alternative” medicine is best described as a medical practice that does not fall under the realm of typical Western medicine. Alternative medicine is usually proven highly effective for many individuals dealing with chronic illness such as arthritis, but, there is not usually a “body of evidence to support a belief under the rigorous standards of evidence-based, more ’scientific’ Western medicine.” Alternative medicine is similar to complementary medicine and they are often lumped together as one in the same. Some examples of alternative medicine are naturopathy, chiropractic, herbalism, traditional Chinese medicine, Ayurveda, homeopathic medicine, yoga, biofeedback, acupuncture, acupressure, acu-massage, noetic science, hypnosis, pet therapy, art therapy, music therapy, detox, ear coning, vitamins & supplements, massage, craniosacral therapy, mindful meditation, EAV testing, lymphatic draining, and diet-based nutrition therapies. Often, patients respond best to integrative medicine, which is a combination of natural healing practices and conventional medicine. UPMC  has a Center for Integrative Medicine, and they state that “integrative medicine refers to the incorporation of evidence-based complementary therapies into conventional treatments for patients. Integrative medicine is meant to work in conjunction with traditional medicine, providing a more holistic approach to healing — mind, body, and spirit.”

Alternative treatments are becoming more popular as of recently, due to a heavy backlash against drugs that can have dangerous side-effects – not to mention, drugs that can be extremely expensive. The media has been covering all types of alternative treatments as our country embraces themes of wellness, pure living, and “going green.”Many “regular” medical doctors are now agreeing with this more integrated approach to healing. Dr. Oz, who is a famous doctor, author, and TV personality has been promoting integrated medicine for years on the Oprah Winfrey show, and now has his own show where he discusses the benefits to both natural/holistic and traditional medicine. He has put a face to a belief system that has been long-held by many: diseases can be treated by proper nutrition and exercise, as well as practicing a lifestyle of not only physical but also mental and emotional wellness.

One way to achieve this full-circle wellness is through practices such as tai-chi and yoga. Yoga as become well-known through pop culture and has spawned many variations from heat yoga to prenatal yoga to, yes, even laughter yoga. (Laughter yoga is quite interesting, and could be a whole blog in itself!) Yoga is everywhere in popular culture. Luckily, yoga is one way of life that Hollywood stars and tabloid favorites can *healthfully* preach to our celebrity-loving masses! Tai-chi is an ancient form of stretching combined with meditation and slow martial arts movements to create balance of mind, body, and spirit. (We will soon be featuring an Arthritis Radio episode & podcast on the topic of tai-chi, so stay tuned! It will be quite interesting and informative – a compelling interview!)

Many of these alternative methods require that the patient’s mind be in a conscious, relaxed state. Called “mindfulness”, this type of “meditation” and self-awareness is believed to be crucial to healing. The current bestseller, “The Lost Symbol” by author Dan Brown of “Da Vinci Code” fame, talks about a relatively new field called noetic science which the looks into the potentials and powers of consciousness—including perceptions, beliefs, attention, intention, and intuition. The main idea behind noetic science is, “mind over matter.”  (Or, mind IS matter.) Noetic science delves deeper into traditional science by explaining things that are inexplicable – one example is healing through the power of thought. Many people believe in the power of prayer, but noetic science looks beyond religion and the supernatural and tries to find tangible results for seemingly inexplicable phenomena such as self-healing.

Other systems of belief include Ayurveda and TCM, or traditional Chinese Medicine. Ayurveda is a form of alternative medicine often used in India and parts of South Asia. While it is more common to these parts, it is now becoming popularized worldwide. Ayurvedists believe in using herbs and yoga to heal. Traditional Chinese Medicine also encompasses herbalism but also relies heavily on acupuncture which many people find use to find relief from chronic pain syndromes such as fibromyalgia or arthritis. Magazines such as “Natural Health” often featuresections on both Ayurvedia and TCM, where you can get ideas on herbs and practices to put into place in order for you to focus on your wellness.

Diet is an important way to maintain health. As we’ve discussed before, diet and food can directly relate to arthritis and related ailments. Author Melinda Winner – a friend of the Arthritis Foundation of Western PA and sometime guest-blogger – has a book out entitled, “Cooking with Arthritis” that can help you with the difficulties that you may face in the kitchen, while incorporating foods that are healthful for arthritis sufferers. Many arthritis sufferers are now going “gluten-free” - a topic that we have blogged about in the past. People suffering from autoimmune ailments can often now find relief through a gluten-free diet. Currently, actress and activist Alicia Silverstone has a book out about going vegan, called, “The Kind Diet”, which talks about the healthfulness of eating organic, going green, and eating vegan dishes for overall health and wellness. Which dietary choices you find most helpful are completely up to you — but even medical doctors will agree that diet and nutrition can play a role in overall wellness — especially combined with vitamins and herbal supplements to add to your  everyday regimen.

While we always recommend you stay on your medications as recommended by your doctor,  it may be prudent for you to look into using herbal supplements or some of these more alterative healing methods in order to improve your quality of life and improve your overall wellness. Whether you believe in healing stones (we’ll soon be introducing a  good friend of our chapter’s jewelry line which features Arthritis Awareness pendants of this nature), noetic science, acupuncture, detoxing through ionic foot baths, ear candling, or any other number of little-known or more famous alternative cures — it might be worth a try! Educate yourself, and talk with your doctor, because any one of these remedies may just work for you!

If you want information on alternative treatments, you can contact our chapter to request a book on natural treatments for fibromyalgia or alterative treatments for arthritis from the Arthritis Foundation. Additionally, we also have a pamphlet on Arthritis Vitamins & Supplements available. Please contact us for further info, and be sure to also follow our blogs (there are usually 1 or 2 new posts per week!) and Twitter for up-to-date information, wellness hints, and news stories on both traditional medicine and alternative therapies. We want to help you live well with arthritis or whatever chronic condition you are facing!

Follow us on Twitter, here: www.twitter.com/afwpa

To see the national Arthritis Foundation’s webpage on Alternative treatments, click here.

To contact us for more information, please email me at aboynes@arthritis.org or call 412.566.1645. You can view available publications here.

Please, leave a comment to share your thoughts, success stories, or any thoughts you have on alternative treatments, intergrative medicine,  and holistic or homeopathic remedies! Stay tuned for future podcasts on Tai Chi for Arthritis; and an interview with well-known doctor Janet McKee on how diet and nutrition can turn YOUR life around!

As always, thanks for reading, and stay well!!

Warm Regards,

- Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

Arthritis & Wellness Fall Walk Follow-Up! What a day! – Lori Knapp, Director of Community Development, Laurel Highlands Region, WPA Chapter

The day started off cold, foggy and misty, but as with most of us who suffer from arthritis can attest to, there is always sunshine ahead, and that is exactly what happened – the sun came out both literally and figuratively.

October 3, 2009 was the beginning of a comprehensive and concentrated effort to raise arthritis awareness and promote positive steps for managing and controlling arthritis and related diseases. We could not have asked for a nicer day, a nicer group of people or a better cause to promote.  What a GREAT inaugural arthritis walk and wellness event!

The Laurel Highlands Region is lucky to have such great residents who are willing to be involved and care about the community and neighbors who are directly and indirectly affected with arthritis or a related condition.  I was fortunate to meet and talk with many of you and appreciate you taking the time to come to Idlewild Park and share your stories and the day with me and the other participants.

Western Pennsylvania is an area where many individuals reside and deal with arthritis or a related disease on daily basis.  Currently 1-in-3 Pennsylvanians endure pain, fatigue and other symptoms of arthritis, as well as side effects from medicines and diseases that generally co-exist. Some of those people may suffer in silence; but this Walk and Wellness Event was the beginning of the end of that silence; it was an opportunity for people to gather and share stories while working toward empowerment, management and controlling arthritis diseases.

The kids had a great time making their art projects, painting pumpkins and playing Wii, provided by the Greensburg Best Buy.  The costumes were very cute and all of them were winners in our eyes; from the Pittsburgh Pirates player with the BIG BAT to the little black cat, and from the little green frog to the cowboys and vampires.  Story Book Forest and all of Idlewild Park was decorated for Hallowboo and put everyone in the seasonal spirit.  Even those of us with arthritis were able to stroll through the park and enjoy the scenery, while not caring about the aches and pains.

Thanks to all teams and individuals who attended and donated to the Arthritis Foundation.  A special “shout out” to Team Deora, Team Devon, Lori’s Leaders and Greensburg-Salem Teachers; the top 4 fundraising teams.  All funds received will be used to help us to achieve our mission “to improve lives through leadership in the prevention, control and cure of arthritis and related diseases”.

We reached more people and raised more funds at this event than in the past four events in Greensburg combined, over $13,000.00!  These funds will be used to provide local education and programs; be proud in knowing that you were and are a huge part of this success.  But we are not stopping there…we have more work to do!

Building arthritis awareness and promoting ways to manage arthritis conditions through events such as this will help us to reach the 1-in-3 affected Pennsylvanians and educate them on taking control of their disease, not succumbing to it. The Arthritis Foundation is partnering with Excela Health Systems and other businesses to provide even more education and awareness to residents living in the Laurel Highlands Region of Western Pennsylvania.  We are already working with Idlewild Park to plan next year’s fall walk and wellness event; please remember to visit the park frequently during their open season, especially for the 2010 Fall Arthritis Walk and Wellness Event.

Don’t forget to check out our website and use our new, exciting and convenient way of accessing the most up-to-date professional information and recommendations all from the comfort of your own home on Arthritis Radio! Also, remember to read our blog entries and utilize our online resources, social networks, and educational information.   Look for correspondence from the Arthritis Foundation to assist you in improving your quality of life through support groups, programs, community events and more.

Please visit our website regularly at westernpennsylvania.arthritis.org, and click “Laurel Highlands” for up-to-date sessions, seminars and events in the area.

Stay involved, stay in touch, and stay active! Also, stay tuned for PHOTOS from this memorable event!

**UPDATE: October 21st, 2009: New Photos Posted! Check out our Pictures from the 2009 Arthritis & Wellness Fall Walk at Idelwild Park HERE or simply visit http://westernpennsylvania.arthritis.org

Warm Regards,

~ Lori Knapp

Director of Community Development, Laurel Highlands Region

Western PA Chapter

Let’s Work Together: How to “Professionally” Live with Arthritis & Similar Conditions – Ashley Boynes, Community Development Director, WPA Chapter

World Arthritis Day is steadfastly approaching. In fact, it is one week from today on October 12^th, 2009. This year’s theme is, “Let’s Work Together” – and that is exactly what I want to write about: working with arthritis and chronic disease.

Each year, World Arthritis Day spotlights on particular part of living with a rheumatic disease. This year, the mission of World Arthritis Day, according to the official international website is, “to consider the challenges of work, be it paid employment, voluntary work or work at home supporting a family, and embraces people with rheumatic diseases, healthcare professionals and employers.”

It is important for people with chronic illness – in this case, arthritis – to try to still work. Work is an important part of how we, as a culture, identify ourselves. It also can give those suffering with a disability or chronic condition a sense of purpose, which can help prevent depression and low self-esteem – both of which are closely associated with these types of conditions.

However, having multiple chronic illnesses myself, I can attest to the fact that it isn’t always easy. Sometimes, it seems like a vicious cycle – you have to work to feel good about yourself, to do what you love, to have health insurance, to pay bills – including medical bills, to pay for your prescriptions, to take care of yourself, your home, your family. On the other hand, you are sometimes too sick to work – but, it is expensive to be sick, and can be costly to properly take care of yourself, so, you need to work, nonetheless! While this cycle can sometimes seem unfair and exhausting, there are ways to cope with it.

When people ask about my job, my response is always that I love it. However, if it is someone that I’m close to, and that I trust, I will then revise this statement to, “I love my job, but it is sometimes really hard with constantly not feeling well.” I won’t lie – there are some days, even some weeks, where it is truly a huge challenge. While this is true, I would not trade it for anything, and I do strive to try my best – and before I delve into other tips, I advise all of you to do the same! Find a job that you enjoy, and one that you feel you can handle, and then just try your best each and every day! That is all that any of us – ill or not – can really ever do, after all. Give whatever version of “100%” that you have in you at that day and time, and, if you need to take some time off, do it! Just remember to complete all of your responsibilities and keep an open line of communication with your boss and co-workers.

Aside from having a job that you enjoy, try to consider a few things: do you NEED to work full-time? In today’s world, unfortunately for most of us, the answer to this is yes – which can be scary if you have an exhausting, chronic, disabling, and unpredictable illness. If you do need to work full-time, talk to your boss about flex hours, or telecommuting. Finding a job that allows you to work from the comfort of your home (if you are disciplined enough to do it) is great for someone with arthritis or a related condition. If working remotely is not an option, maybe you can work less hours, or start later or work later, or work half-days on days that you are feeling bad. There are many ways that you can adapt if you have the options to do so. If you have children, make sure you factor in childcare. It can be overwhelming to worry about caring for a family and working a full-time job for anyone, particularly if you do have a chronic condition such as arthritis. Also, make sure you are allowed to take breaks as need be – to stretch, to take a walk, to get something to eat, take your medicine – whatever you need to do.

If you are able to survive on a part-time salary, then make sure you utilize your time off to rest and relax. Sometimes, part-time or freelance work is best for someone with these types of conditions, if you can afford to do this. Try to schedule your (sometimes seemingly endless!) doctor appointments or treatment sessions during your “off” hours, and  use this opportunity to spend time with your friends and family. It is proven that interacting with others socially – even when you do not feel “up to it” is an important part of coping with your illness. If you are working part-time and have a particularly bad day on a day that you are scheduled to work, talk with a co-worker about switching days or hours. Typically, part-time jobs are a little more flexible with switching shifts and things of that nature.

Even if you are lucky enough to have the option “not” to work, you should still find some type of work to do, even if it is sparingly or at your leisure. Counselors at your local Office of Vocational Rehabilitation – which is usually a part of the Department of Labor & Industry – can not only help you find a “regular” full-time or part-time job, but they can also advise you of volunteer opportunities and charity work that you can do. It is important to have some type of work to do. When you have a reason to get up out of bed, people to help, or things you need to accomplish, you will feel better about yourself emotionally which can lead also to physical wellness.

Another option is “being your own boss” – but this is often easier said than done. If you can do it, starting your own business, particularly working at home or freelancing, is a nice way for those of us suffering from a chronic illness to work while still having the flexibility of taking time off when we are having bad days and need extra rest, without making anybody upset.

Regardless of how often you work, or what you do, it can certainly be overwhelming both physically and mentally if you have arthritis or any other chronic or autoimmune condition. Stress can often trigger flares, working can increase fatigue, and if someone in the office even has a case of the sniffles, you can bet that you’re going to get sick 5 times worse within the next day or two. However, you cannot let these things stop you. Some important things to remember are that while it should be a huge priority, your job is not your whole life and that your health should be a priority because without your health, how can you do the work that you love?

Another thing: make sure to remember is your co-workers. Make sure that they understand your condition and the severity and unpredictability of it, so that they do not think you are getting unwarranted special treatment. Assure them that you would probably rather be healthy and well than “have” to be getting the special treatment in the first place. Also, make sure that you familiarize yourself with local laws regarding medical leaves, and check into your company’s policy on sick days and medical leaves of absences, as well. If working full-time gets to be too much but you still need medical insurance, see if there is any way to work part-time and somehow work it out so that you still get benefits. You may want to check into disability benefits if you absolutely cannot work. Sometimes, you can still work part-time while collecting disability, in which you get a small stipend each month plus health benefits. However, most occupational counselors will advise that you exhaust all avenues with trying to work before turning to this option.

Most importantly, make sure your bosses are understanding of your condition. With autoimmune conditions like rheumatoid arthritis and other chronic conditions such as fibromyalgia, you can flare for 3 weeks, for a day, for 2 hours – it is often irregular and unpredictable, unfortunately. With some conditions, you are sick every single day, and the only thing that flares and lulls is the severity of the symptoms. However, if you have an understanding and accommodating workplace, your professional life can be made much easier, despite your illness.

So whether you volunteer, or are a “bigwig” CEO, kudos to you for the fact that you are still pushing on regardless of your condition. With proper communication with your boss and coworkers, with the help of an occupationalcounselor, and with self-confidence, you can “work together” with arthritis and similar diseases. Do not overdo it, be aware of limitations, and be realistic – BUT, set your goals high – you can do it!

For more information on World Arthritis Day, click here: “LET’S WORK TOGETHER!”

For more information on “Arthritis in the Workplace”, please call us for a FREE brochure!!

For info on Arthritis in the Workplace from the Arthritis Foundation national page, click here.

Many thanks, as always, for reading, and feel free to share comments on how you have made adjustments to make working a little easier on YOU!

PS: I recently wrote a blog on Fibromyalgia. Check out Arthritis Radio tomorrow, Tuesday, October 6th, for a NEW episode all about Fibro!  http://arthritisradio.podbean.com

Best Wishes,

~Ashley Boynes

Community Development Director

Western PA Chapter

Voted “Best Blogger in Pittsburgh!”