The 2010 Arthritis Foundation Advocacy & Kids Summit & How To Be An AF Ambassador!- Ashley Boynes, Hanna Gruen & Lori Knapp – WPA Chapter

We all have a story to share and information to spread – learn about the Arthritis Foundation Advocacy & Kids Summit and how to become an Arthritis Foundation Ambassador! Read on!

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I was diagnosed with rheumatoid arthritis in March, 2007 and it affects all of my joints.  I was feeling rather alone with my diagnosis and did not know what the heck was going wrong with my body. After my initial period of shock and denial, I started to do some research online and there was too much info out there, it was scary. I finally decided to contact the Arthritis Foundation in Pittsburgh and requested any and all information that was available; they also told me about the 2008 Advocacy & Kids Summit.  At the time, I was not actively involved with the Arthritis Foundation and did not know much about what they offered; I did not even know anyone else who had RA and thought I was going crazy.  But after learning a little about RA and the Summit, I completed the registration form and figured, I might as well attend the Summit and try to talk to others and see if they were suffering with the same types of problems, pain and related symptoms.

What an eye-opening experience!!! I have never met so many people who, even though they suffer and deal with chronic pain and problems, push through it and work passionately towards a common goal…increasing arthritis awareness! I felt empowered when talking with others and meeting with U.S. Senators and Representatives. It was at that moment, that I realized my life’s path…I immediately signed up to be an advocate and an ambassador to help increase arthritis awareness and strive for better medicines, better ways to manage our conditions and hopefully find a cure.

Since then I have been involved in many Arthritis Foundation events and made contacts with local officials and other VIPs that I never would have done without that initial connection at the 2008 Advocacy & Kids Summit. If you want to make a difference and become more involved, then you definitely need to register. I will be there again this year, not as a volunteer, but an Arthritis Foundation employee, advocate and ambassador!  Please join me in raising arthritis awareness and improving your quality of life and definitely your self-esteem and self-worth.  See you in Washington, D.C. on March 1 – March 3!
- Lori Knapp, Director

Community Development for

Laurel Highlands Region

lknapp@arthritis.org

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ad⋅vo⋅cate

[v. ad-vuh-keyt; n. ad-vuh-kit, -keyt]  noun

1.) a person who speaks or writes in support or defense of a person, cause, etc.

We need YOU to become an Advocate! Registration for the 2010 Advocacy & Kids Summit is now open.

So what, exactly, is the Advocacy & Kids Summit? It is an event held by the Arthritis Foundation to increase arthritis awareness and to advocate for the cause. This year, the Summit will be held in Washington, DC from March 1^st-3^rd, 2010. This unique and exciting event will include advocacy training, kids’ activities, and the opportunity to meet and network with your local state representatives and senators. By sharing your personal stories and your trials, tribulations, and triumphs as you live with arthritis and related disease, you can disperse valuable information to these lawmakers, and aid in bettering your circumstances through encouraging the improvement of laws and the betterment of health care. The most important part of the advocacy summit, however, is to spread the word about the 117 types of arthritis – including childhood arthritis – and to provide education on these illnesses and the toll that they take on human lives. We need government and lawmakers to view individuals with arthritis as people, and not just as a number, a statistic, or a preconceived, stereotyped group that they may have in mind. Arthritis sufferers come from all communities, and range in age, ethnicity, and background. There is no set portrait of what an arthritis patient looks like – and the more personal stories that we can spread across Washington DC, the better!

Speaking up and speaking out is important – and we can let our voices be heard! Let’s move together to make a difference! Our ultimate goal is to find a cure for arthritis. However, without awareness, it is nearly impossible to obtain funding for research, or to help better the quality of life for those afflicted with arthritis, the #1 leading cause for disability in the United States. So why not mark your calendars and take a trip to our nation’s capital for this worthy and meaningful cause?

If money is an issue, you can take comfort in knowing that if you live in certain districts you are potentially eligible for stipend money to help cover the cost of your trip. Currently, the Arthritis Foundation is accepting applications for stipends for individuals living in either Murtha’s district (PA 12) or Schwartz’s district (PA 13). (By clicking on these PA12 or PA13 links above, you can find out if your county falls into one of these two districts.) Please contact us if you are unsure which district you are in, and if you need further information on whether or not you qualify for this stipend.

This will be a great event for advocacy networking, spreading awareness, and for children with Juvenile Arthritis. So much will be going on, and there is sure to be something for everyone! Kids will be able to learn how to advocate for themselves, there will be a Rheumatoid Arthritis “meet and greet”, updates on research, an advocacy dinner, a chance to meet with Senators & Representatives, and more! Visit http://www.arthritis.org/advocacy-summit.php for more detailed information, and how to register. If you need info on the stipend, please visit http://www.arthritis.org/advocacy-stipend-application.php – but hurry, the deadline for stipend applications is January 8^th, 2010. We hope to see you there – and remember, this event is open to everyone, all over the nation! When registering, please be sure to let the Arthritis Foundation know that the Western PA Chapter referred you. ALSO: If you attended last year, please leave a Comment on this blog and share your experience with others. If you do sign up for this year’s event, please also leave a Comment and let us know – we’d be happy to hear from all of you who are planning on attending!

We CAN make a difference. You are NOT alone, so let your voice be heard! Remember: The Power of 1, The Voice of Many.

Let’s Move Together…. to Washington D.C. for the 2010 Advocacy and Kids Summit!

http://www.arthritis.org/media/advocacy/Advocacy_Book_2010_vf.pdf

PS: Please feel free to contact our AFWPA advocacy “experts” Lori Knapp, or Hanna Gruen! Call 412.566.1645 to be put in touch with them and to learn more about advocacy or visit: http://www.arthritis.org/chapters/western-pennsylvania/grassroots.php Below, Hanna will share with you how to become an Arthritis Foundation AmbassadorThank you for your support!

Be Well,

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

voted, “Best Blogger in Pittsburgh!”

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What is an Arthritis Ambassador??? It is someone who will commit to at least one year of building a strong relationship with their Members of Congress and their staff. The expectation of these ambassadors  is that they will participate in a monthly conference call with Arthritis Foundation staff  and fellow ambassadors throughout the USA. Each month a task is assigned. It may be to contact our reps regarding pending arthritis legislation, to attend a town meeting or to encourage members of Congress to participate in local AF events. This offers a wonderful opportunity to connect with others who are enthusiastic about advocacy and to learn of their successes.

You have 2 such people from our chapter who are actively involved and from whom you do and will hear from time to time with requests for your input. Lori Knapp and I try to be on every conference call each month—-we both have been in touch with local and state legislators continually advocating on behalf of Pennsylvania’s children and adults who suffer from arthritis.

So, if you don’t yet know your local reps: make a phone call , try to get an appointment to meet staff involved with health care and keep them abreast about arthritis and how it affects you. Make them aware of difficulties presented to you by the health care system .

If you have questions or comments, by all means contact Lori or myself .

-Hanna Gruen,

Chair of Advocacy

Arthritis Foundation, Western Pennsylvania Chapter

Ashley’s Journey to Wellness: Entry #3 – Being a “Patient” Patient – It’s a Full-Time Job! – Ashley Boynes, Community Development Director, WPA Chapter

Wednesday, December 16th, 2009:

So, it’s been almost 2 weeks since my first set of Remicade infusions, and about 3 weeks since starting Methotrexate. I know that the Methotrexate is slow-acting, but from the way people talked, I thought that Remicade would give me some signs of improvement rather quickly. It hasn’t.

In fact, yesterday I had one of my “bad” days. Both my RA *and* Celiac symptoms were a-flarin’ away. Today I’m feeling slightly better, and to me any improvement is good. But, I’m finding myself actually looking forward to Monday’s Remicade treatments. (Is this what my life has come to? Haha.)

I guess patience IS a virtue as I’d mentioned in my previous Journey to Wellness entry. If you live with chronic illness, you almost have to develop patience, for there is often no other option.

Being chronically ill really IS a full-time job in and of itself!

For example, today I had an 11:10 appointment to get bloodwork done. I sat in the waiting room for almost an hour before getting taken. While I was waiting, I pondered how much of my life had been spent in doctor’s offices, hospitals, or waiting rooms, particularly in the past year. It made my brain hurt to think about it! It also was rather depressing!

I’ve now found ways to occupy myself in waiting rooms. Books, magazines, and sometimes even my laptop. The best thing I’ve purchased for myself in the last year or so has been my BlackBerry. Thanks to that little handy-dandy device, I can text, tweet, email, and even get work done while sitting in the dreaded waiting rooms!

That is, when my hands and fingers are cooperating. Yesterday, I actually had to call off work because I couldn’t type. My hands were in such pain, and so stiff, that I just couldn’t bear it. No typing, no texting, no Twittering, or Facebooking….let’s just say that my day consisted of napping and watching deliciously bad television! I was bummed out because I also had wanted to write out Christmas cards last night but obviously could not do that, either! Oh, well.

I suppose I can’t say that the meds aren’t helping yet at all. First of all, the Methotrexate and Remicade are pretty new, still! And while I’ve seen no noticeable improvement from the daily Prednisone I’ve been on for about 7 months, I have been having 2 or 3 “good” or at least “OK” days per week, which, in my mind, is good. This past weekend, I had a few good days in a row – yay! Unfortunately, I think yesterday was my “crash” day that I’d talked about in Entry #2.  It seems that these crash days are unavoidable and the more that I talk to others with autoimmune illness, it seems that I am not alone!

So it’s all a waiting game. I’m on the waiting list to be seen at the Mayo Clinic. I’m waiting for my meds to work, waiting to feel better. Waiting until after the holidays to try a new (almost-vegan!) diet.

Oh, and possibly waiting for a full KNEE replacement?!? Yes, you read that correctly. I’m 26 years old but saw Dr. Ortho last week, and it seems that my options for my right knee problems are: keep on getting steroid shots in the knee (which is a “band aid” of sorts and will not correct the structural/mechanical problems of my knee) or, get a full replacement, which, he doesn’t want to do but is the only other option. He claims that the disease in my knee is far too progressed to do a “simple” arthroscopic surgery and that no orthopedic surgeon would do one on my knee. A synovectomy may be an option but there are so many issues going on in my knee that it might not fix the main problems which are locking and pain. I got a Cortisone shot on Thursday but it left me in extreme pain the entire night and into the next day. Saturday, it was back to its old tricks and locked up 4 times in one day! So, we’ll see. I’m going to seek out a second opinion after the holidays (I guess he’ll be named Dr. Ortho the Second) and take – you guessed it – a “wait and see” approach to that, too!

Sometimes I feel like I’m walking (limping?) in place, on a treadmill that is neverending but never really going anywhere. My calendar fills up with doctors appointments and has lessened in social engagements. This morning, I got blood tests and labwork done; tomorrow I get a field vision test to look at a bull’s eye effect that I have on my macula and to again rule out multiple sclerosis. (The macular halo effect that I have is called bull’s eye maculopathy and is probably from past arthritis meds such as Plaquinil. However, my rheumatologist is puzzled that it has never reversed itself or improved since being taken off this medication 5 years ago.) Next week I go for Remicade infusions and rheumatologist appointment. I see my gastroautoimmune doctor and naturopathic in January, and, hopefully, Dr. Ortho II.

When will all of this time and effort (not to mention money!) put into feeling better actually make me feel better?

Who knows! The important thing, I think, is that I’m trying  to stay positive, I’m trying everything from the most expensive high-end drugs to the most simple natural and homeopathic remedies, and am exhausting every avenue. I’m always super on-top of my health, and always have been. My primary care doctor, (we’ll call him Dr. PCP, I guess, to be nice) basically told me in so many words during the summer of 2008 that I was a hypochondriac. Well, wasn’t he taken aback when I told him during the next visit that I had Celiac Disease, and a couple visits after that, that the Celiac (that he would have never caught on his own, since I took it upon myself to go to an endocrinologist who diagnosed me initially) led to other complications and was not responding to the gluten-free diet and that I possibly had fibromyalgia AND my rheumatoid arthritis still never went into remission? My point here is that it’s all worth the effort. Stay on top of your own health and wellness, for when it comes to health, I think you can never be too careful. Sometimes, you just know things that doctors may not be able to see. So stay proactive and positive, and keep the faith! Try, try again – it’s the only way anything can ever get accomplished!

So I wanted to leave you all with another (short) story before I end Entry #3 in my Journey to Wellness. I sit here  at work with my hands shaking from meds, back and hips in pain, legs feeling like they are on fire, head hurting, and nauseous, but still with a SMILE on my face as I share this story with you! This past Saturday was our Jingle Bell Run/Walk 5K in Pittsburgh. After the race was a Juvenile Arthritis Awareness Session & Family Day holiday party at the Carnegie Science Center. My lovely coworker Allison who organized the event asked me to speak at the parents’ awareness session to share my story of growing up with JRA and to intro the doctor who was the main speaker. I happily obliged.

I was strangely nervous beforehand but I got up on that stage and shared my story. I talked about the social struggles of being a young person with chronic disease, how my physical ailments cut my softball and cheerleading careers short, but how it allowed me to open up to my love of writing. I spoke about the importance of taking care of yourself and having a great support system to lean on, etc. After the event, I was approached by a mother and daughter. The girl was 17 and recently diagnosed with Myositis, a rheumatic disease much like Rheumatoid Arthritis. She was struggling with insecurities from facial puffiness due to Prednisone, hair thinning from Methotrexate, and feeling like an outcast during her senior year of high school. I could relate on many levels. Her mother thanked me with tears in her eyes as we swapped stories. I had 3 others sets of parents stop me after the event to thank me for speaking. One man called me a “hero” and an “inspiration” and one other gentleman said my speech made him want to become an advocate here at the Arthritis Foundation for his daughter’s sake. I went home that day in the best mood I’ve been in, in a long time! It was truly so very rewarding that by sharing my experiences – both positive and negative – could encourage/help/touch others so very much. It made me feel better, and it gave me some strange sense of security and hope. Maybe I learned the same message I was sending them, which was that when dealing with arthritis and other autoimmune illnesses that “you are not alone!”

It was one step on my “Journey to Wellness” that I will never forget!

With that, I’ll say goodbye and leave you all with a quote that I’m going to try to begin to live by: “Stop thinking in terms of limitations and start thinking in terms of possibilities.” ♥

Thanks for reading and for joining me on my Journey to Wellness. I will surely keep you all posted and will continue updating my progress! I wish you all the best of luck in YOUR own personal journeys, too! Please share YOUR thoughts and feedback! Any thoughts on total joint replacement for young adults? How long did it take YOU for your meds to start working? Anyone else get tremors/shakiness from their medications? Do you ever find it hard to be a “patient” patient? Any advice to others who are struggling to write out holiday cards this season? I’d love to hear all of your thoughts and feedback! Please, share your stories! Comments welcomed & encouraged – post on here or drop me an email!

Take Care & Be Well,

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

voted, “Best Blogger in Pittsburgh!”

Click here for Entry # 1 in Ashley’s Journey to Wellness

Click here for Entry #2 in Ashley’s Journey to Wellness

And don’t forget to read/comment on our other recent Rheum for Wellness blog posts on mind-body healing & positivity, how to give to the AFWPA this holiday season, and more!

Mind Over Matter – Health, Thinking Positively & the Mind-Body Connection! – Ashley Boynes, Community Development Director, WPA Chapter

When dealing with chronic illness like arthritis, especially when you are in pain, it can be hard to maintain a positive attitude. Sometimes, with certain diagnoses, it may seem impossible to find hope or remain optimistic. However, as we’ve mentioned in past blogs, “Food For Thought: The Power of Positive Thinking”, and “ “Turning Negatives Into Positives”, thinking positively, even in a negative situation, can not only make you feel better emotionally, but can also benefit your physical health!

In fact, there have been studies that show that positive people are more healthy than negative people, and there have also been studies that supposedly prove that the “mind over matter” theory truly exists. Can our thoughts heal?

No doctor will write you a prescription for a dose of laughter or a bottle of smiles, but, most will recommend practicing an overall lifestyle of wellness — and this includes thinking positively, and doing things that make you happy — especially since depression is often a comorbidity with diseases such as rheumatoid arthritis and/or fibromyalgia. In some cases, the cause is physiological – some autoimmune diseases cause an imbalance of certain chemicals in the brain; in other cases, the cause is emotional – patients may feel down and depressed about their diseases. (This is why we think that having support from loved ones — whether in person or via an online community, is so important!)

It may sound like baloney to some of you. I know when I am having a “bad” day, that it is easy to scoff at people who tell me to “stay positive” and “keep smiling” — I tell you, it’s easier said than done! That being said, I do know that there is, however, validity in their points. After all, no one wants to be around a Debbie Downer all the time, and being happy does make you feel so much better…if not physically, than at least emotionally and spiritually! Today I woke up feeling badly - it seemed that all of my physical ails were bothering me at once. I had a can’t-face-the-world, “how can I keep living like this”, BUMMER kind of morning. However, as I sipped my tea, dog snoring at my feet, birds chirping in the other room, doing work I love, in a beautiful home in all of it’s holiday bliss, knowing that I have a wonderful support system of friends, family, and loved ones – I felt supremely blessed, health issues aside. In fact, reveling in all that was GOOD, thinking about the many wonderful things and people in my life, doing a job that I love that at times helps others, made my health issues a NON-issue. Sometimes, all it takes is to look at things from a different perspective! Instead of moping around, dwelling on your sickness and wondering “why me”, take a step back and wonder, why NOT you? Bad things happen to all of us. You can handle it!

The good news is, there are many medical treatment options out there that you can try, whether traditional or naturopathic. There is a whole world of nutritious food, and helpful websites, and positive people to help you keep pushing on! They say that you can heal yourself with your thoughts, so why not give it a try?

You may be wondering who “they” are. Here are just a few examples that I’d like to share  – before I begin, I’m not saying that a positive attitude will “cure” you. Being optimistic, in almost all cases, is not going to allow you to give up your meds or never set foot in a doctor’s office again, but, it will make you happier in general, which could potentially lead to better health, and will definitely lead to a better overall outlook. Besides, they say that positivity and happy thoughts are good for the human collective conscience as a whole. And isn’t THAT a worthy goal?

Here’s who “they” are…

* Louise Hay - Louise Hay, author of “You Can Heal Your Life” and “You Can Heal Your Body”, among many other books, is one of the pioneers of the mind-body link, and claims that she healed her cancer through the power of positive thought and “thinking it away.” Through “affirmations”, she convinced herself that she was not sick…and she, somehow, was cured! In fact, she believes that there are MENTAL causes for PHYSICAL ailments. Regardless of what you believe, her story is an inspirational one!

* Deepak Chopra - Deepak Chopra encourages overall well-being through physical and emotional wellness, spiritual health, and guided meditation. He is a world-renowned leader in the field of mind-body healing, and has held world leaders and international celebrities among his clientele. He has authored more than 55 books and believes that we hold the key to our own well-being. He is certified as a traditional MD but is more engaged in “alternative” medical practices. He encourages a clean lifestyle in all ways and is known for his theories on shared human consciousness and positive thinking starting with one’s self.

* Marilyn Mandala Schlitz - Marilyn Sclitz, PhD, is at the forefront of Noetic Science, a new field that has been brought to light in the book, the Da Vinci Code. Marilyn, who heads up IONS, has “pioneered clinical and field-based research in the area of human transformation and healing.” She has authored books on “mind-body medicine” and has helped to perform scientific experiments on healing and is bridging the gap between medicine and spirituality. Schlitz is “a leader in the area of consciousness research. She has conducted basic science research on the powers of the mind, including remote viewing, mind over matter, and distant intention and healing.  She has engaged in clinical studies of  consciousness healing and is currently completing a National Institutes of Health (NIH, part of the Department of Health) sponsored study looking at the power of compassionate intention on wound healing in woman undergoing reconstructive surgery.”

Whether you “believe” any of this or not, it is compelling information to take a look at! It doesn’t matter what religion, faith, or creed you practice, if any….it is about using your mind and soul to aid in healing your body. We are not encouraging or pushing any viewpoint, but just putting it out there…

I look at it this way — it couldn’t hurt! With the holidays approaching, there is no better time to think positive and to get in the “jolly” spirit! Why not start today with leading your health into a positive direction? I’m going to!

Let me know your thoughts – how does being positive/optimistic help you? Have you ever “healed” an ailment through thoughts or know anyone for whom these types of things have worked? I know people who have been healed in a near-fatal situation by an Indian stone, people who have willed cancer to leave their system, and (this is just in my case, not preaching to anyone!) have seen prayer work wonders. I know from personal experience that trying to be happy in light of it all is the best weapon against disease! After all, being negative and dwelling on it isn’t going to help matters much – so making a conscious effort to stay optimistic, hopeful, and positive cannot  hurt! It can only help. Why not give it a try? You can think yourself healthy!

Thanks for reading, and be well! And please, stay tuned for my next entry in Ashley’s Journey to Wellness.

PS: ‘Tis the Season!

Feeling generous and want to give a gift to help spread arthritis awareness and eventually find a cure? This holiday season, why not donate to the Arthritis Foundation of Western PA? There are many ways that you can help!  Check out our many ways to give this holiday season…

Stop down at our Jingle Bell Run/Walk 5K tomorrow, December 12th, and sign up to walk/run, or, enjoy the Holly Hour and donate tips to the AFWPA! Info can be found here: http://jbrprgh.kintera.org

You can donate while you tweet! So easy! Not to mention, you can give in low increments! Visit www.twonate.com and use AFWPA as the charity code! Here is our profile.

Another way to give…WITHOUT spending a dime? Be sure to use www.GoodSearch.com as your search engine and set “Arthritis Foundation of Western Pennsylvania” as the charity that you “GoodSearch” for. Also, this holiday season, you can do the same as you finish up shopping online – use www.GoodShop.com - every search and every purchase benefits our chapter at no extra cost to you!

We have a Cause on Facebook, too. You can “Join” our Cause or “Donate” here to Help Spread Arthritis Awareness – click here!

Our friends at WHIRL Magazine also featured us in their Charity WHIRL 31 Days of Giving special: check it out HERE.

Last but not least, you can always visit our chapter homepage at http://westernpennsylvania.arthritis.org for information on how to donate online or how to take part in a United Way payroll giving campaign to benefit the Arthritis Foundation of Western PA. Feel free to call us or mail us a pledge if it suits your fancy, too!

We know times are tough, but we appreciate any help that you — or Santa — can give us this holiday season! To learn about some of arthritis research initiatives we’ve contributed to, click HERE — let’s move together to find a cure for arthritis! Together, we can make a difference!

Thanks,

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

voted, “Best Blogger in Pittsburgh!”

Ashley’s Journey to Wellness – Entry #2 – It Could Always Be Worse! – Ashley Boynes, Community Development Director, WPA Chapter

Tuesday, December 8, 2009 -

As I sit down to write my second entry, I decided if we’re going to be honest here, let’s be honest. While I’m so grateful to not “look sick” most of the time, my cutesy headshots are probably sending the wrong message to readers. The reality of my situation is that I usually DO look pale, with dark circles under my eyes, and, on some days, am either too fatigued or too much in pain to even wash my hair! (Thank goodness for “dry shampoo” - Paul Mitchell has some great products!) Thus, the photo to your left here is a more accurate portrayal of how I really look on a daily basis. (Let’s just say makeup works wonders!) I would love to let the world think that I’m always walking around like a polished, camera-ready fashionista, but if I’m going to project a real, honest, and accurate “behind-the-scenes” look at living with chronic illness (and hopefully beginning to get well) – I might as well use a photo that is a bit more honest. So, there you have it. That’s me, Tuesday December 8th, at 2:20 pm.

Living with these multiple conditions has affected my looks in certain ways. While I’m still considered “slim”, taking steroids daily has led to 12(ish) extra pounds that I can’t shed. Prednisone makes my appetite almost insatiable. The problem with being hungry all the time is that nothing seems to “fill me up.” It is hard to satisfy this insatiable appetite with healthy foods that are still gluten-free AND filling! It is also hard for me to exercise the way that I’d love to be able to, with a bum knee, constant lightheadedness, overall aches and pains, and absolutely debilitating fatigue. All of this HAS definitely affected my self-esteem. This is why I try to do things to build up my self-esteem, like writing for example, or even just talking with friends. I also try to do things that make me happy – whether it is snuggling with my dog, baking, or, lately, decorating for Christmas. I figure that one day I’ll be back to feeling and looking like my old self, and for now, I just have to “make do” and focus on getting better! I had another “reality check” moment this weekend, when, looking at photos from a doggie birthday party (yes, you read that correctly – 2 of my good friends had a joint birthday party for their pups!) that I actually thought, for the first time, that I looked sick. Maybe it was just my being uber-critical on myself, but the truth is this all has taken a toll on me in so many ways! So there’s one hurdle I’ve been dealing with – the “self-esteem” part of being incessantly ill. Quite a bummer, but I try not to let it get to me, because — who cares?? Without your health, you have nothing, so I need to focus on that before obsessing over my looks!

On a good note, I felt OK this weekend! (“OK” or “Alright” are upgrades from the norm, for me!) I had poker night with my family, the said birthday party with my dogs and some of my best friends, and we had visitors in from Florida. We even got to go to the Steeler game! The whole weekend was a lot of fun – but busy…and unfortunately on Sunday night, I was feeling “icky” (my word of choice) again. It was like my body couldn’t handle having a a “normal” weekend. I was just so tired, developed a terrible cough, sore neck and back, and so on. I’ve learned that when I “overdo” it, I tend to “crash” with all kinds of symptoms – arthritis flare, headaches, flu-like symptoms, fatigue…etc. Now, don’t be mistaken – this was not a wild weekend full of partying and debauchery – I do not drink a lot anymore, and if we stay out (or up!) past 11pm these days, it is quite a shocker — but even having a few more “busy” days than usual is enough to send my body into icky-mode. I guess I’m still trying to adjust to the “take it easy” lifestyle! (Last night, I was in bed at 7:45pm — seriously!)

Unfortunately, it didn’t help. I’m battling mega “brain fog” today and overall fatigue & soreness. Awoke this morning with a headache and nausea. I must say – I hope that these new treatments start working quickly! I amused myself with a “funny” this morning while updating my Twitter and Facebook accounts. I’ll share it with you, as I’m sure many of you can relate….here goes….”I hope my new medications start working quickly. I want them to work instantly! They say patience is a virtue, but I have no patience. However if BEING *a* patient is a virtue, well, I’ve got that one down!” Hehe….excuse my corny humor.

Let’s get to the Remicade experience. Here goes. I got to the hospital about 20 minutes before my infusions were scheduled to begin. Armed with the past 2 issues of ELLE and this week’s People Magazine, I headed through the vast and hospital-smelling maze of hallways to the infusions wing. As the infusions center is a part of this particular hospital’s cancer center, I felt blessed as I headed down the hall. I knew then that what I was going through was suddenly not that bad. Seeing the cancer patients sharing this space with me saddened me, but also inspired me. What warriors they are! If they can get through THAT, then I can get through anything. And that’s how you have to look at it. People always say, “it could always be worse” – and that is true. That saying used to bother me, because, the way I look at it is — yes, it could. I’m grateful that it isn’t, but a.) it doesn’t make me feel any better and b.) it just makes me sad for those folks for whom it IS worse. But, it is still true, nonetheless. It could always be worse, and something about being in that area of the hospital made that even more clear. Yes, methotrexate is a chemo drug. But thank God I’m not ON chemo. Yes, I had to sit there for hours and get infusions – but thank goodness they weren’t blood infusions or dialysis or for chemotherapy. Sure, I had to sign “Hazardous Drug” papers that were a little daunting, and be forewarned that Remicade could be dangerous to medical personnel and caregivers….so I was a bit frightened that it was going into my body (especially when the administering nurse came in dressed in a HAZMAT-like suit) – but, again, it wasn’t all that bad in perspective!

I mean, it wasn’t pleasant. I was freezing even with 2 blankets. We got served lunch but it was a big ordeal for them to find me a gluten-free meal and by the time it arrived, I’d lost my appetite. My blood pressure dropped extremely low (apparently this is common with Remicade, and my blood pressure and temperature are always lower than “normal” anyways) and I felt lightheaded. But, it didn’t hurt. The worst part is having the needle IV put in your hand, but, if you’re an RA patient, you’re probably used to needles. Afterwards, I was very tired from the Remicade and the Benedryl that they had to give me (along with Tylenol) beforehand. I was a little nauseous but did not have any bad side effects the rest of the day….yay! Also, they’d initially given me a 5-hour time frame and I was out of there in about 3.5 hours, which was nice.  I spent the rest of the day resting, catching up on DVR’ed TV shows and reading magazines, and my darling boyfriend made sure that I was comfortable and taken care of! My pug kept me warm, too, with her endearing snuggling and cuddling!

So, all in all, it wasn’t bad. I go back in 2 weeks. They gave me no inclination on how fast-acting Remicade infusions are. As with anything, I’m sure all patients are different. I did not take Methotrexate last week, as per Dr. Rheumie’s orders, but I will be starting it back up again tomorrow. (I do not want to start it Friday & chance being sick for our Jingle Bell Run on Saturday!)

Hopefully, these two drugs can start working soon in order to help my autoimmune issues, and to help get my Rhuematoid Arthritis and Celiac Disease under control and to prevent further problems!! I’m still working on trying to start and stick to a healthful diet at the advice of my holistic health counselor, and am still taking a multitude of naturopathic supplements. We’ll see! I see my orthopedic surgeon — Dr. Ortho — on Thursday! I will keep you all posted. No matter what the future holds, I’ll be ready! I’m going to get there — it may take some time, but I’m happily trudging steadfastly forward on my journey to wellness….and am glad to have you all along with me!

Please, feel free to share your thoughts & comments, and stories! How was your first experience with getting infusions such as Remicade? How long did these drugs take to work for you? Has having arthritis or a similar condition affected your self-esteem at all? Do you have, or have you had, any fears along YOUR journey to wellness? What did you do to remedy them? I can’t wait to hear from you all! Comments, thoughts, suggestions, encouragement, or questions are always wholeheartedly welcomed and encouraged! Thanks for coming along on this journey with me.

Stay well,

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

voted, “Best Blogger in Pittsburgh!”

Ashley’s Journey to Wellness: Entry #1: Come Along for the Ride! – Ashley Boynes, Community Development Director, WPA Chapter

An Intro:

As most or all of you know by now, I am 26, work for the Arthritis Foundation, Western PA Chapter, and have had rheumatoid arthritis since ago 10. I also suffer from Celiac Disease. I am about to start new treatments that should help with both of these autoimmune conditions.

As most of you also know, I’m a writer, and I’m not shy about sharing my personal stories, thoughts, or feelings!

Since the origination of blogs was to create an online journal or daily log to either keep private, or, as most of us do now, share with the public, I’ve decided to share my “journey” publicly as I set forward to begin new RA treatments.

I currently am on a supplement/tonic regimen (including things with “huh??”-inducing names such as CoQ10, Lymphtone, AminoGest, Phyto-Cal-Mag, and Hypothalmapath) recommended by my naturopathic doctor, am trying to practice better nutrition as recommended by my holistic health counselor, and am now adding Remicaid and Methotrexate to my Prednisone, B12 injections, and Elavil, at the recommendation of both my rheumatologist and gastroautoimmune specialist.

I will share my story as I move forward: the ups and downs, the trials and triumphs, the good, the bad, the ugly, the successes, and my personal hopes and fears as they relate to my conditions. I will be open, I will be honest, I will not censor or bias what I am feeling physically and/or emotionally. Through the Rheum for Wellness Blog, I will document my progress for you all to follow, updating a couple of times a week as I embark on these new personal journeys.

Just to make it clear: I am by no means offering any medical advice – you should always consult your own doctor for that – and I neither mean to scare nor encourage anyone, for everyone’s body responds to different treatments in different ways, and I am not a medical professional. However, I feel that with chronic and sometimes disabling, frustrating diseases like rheumatoid arthritis (that also can take an emotional toll) that it is nice to be able to read what someone else is going through, find support through a community (whether online or in “real life”) and be able to relate what you are dealing with to others’ real human experiences.

I hope that as I chronicle my story, you will share yours, too, through comments and, if you’d like, emails. We encourage dialogue. I’m happy to share my experiences with you all, in hopes that it can amuse, inform, or inspire you, or at least have you know that you are not alone! We can build a community of support and start quite a conversation about the reality of this conditions and the sometimes-long road to recovery.

So today, I sit and write….Ashley’s Journey to Wellness: Entry #1

Wednesday, December 2, 2009 — I visited my rheumatologist last Monday. (For privacy’s sake, we will refer to him as Dr. Rheumie.)  Dr. Rheumie and I had been discussing treatments for awhile now. He’s been my rheumatologist for about 15 years now, give or take. I have tried many arthritis medications and, though my disease had never fully or “officially” went into remission, was even “drug-free” for awhile. However, when I quit Enbrel about a year and a half ago, (whether coincidence or causative) my immune system went out of whack. My Celiac Disease began showing (harsh and unresponsive, often-neurological) symptoms and my rheumatoid arthritis started flaring up more often. Since they are both autoimmune disorders (and there is no official medication for Celiac, as the gluten-free diet is the only “proven” treatment), many of the medications and treatment strategies are the same. Neither disease has a cure – yet! But both CAN be managed. Therefore, Dr. Rheumie and Dr. Gastro (my autoimmune gastroenterologist) had been working together to come up with a new treatment plan.

I’d felt like I’d tried everything (the most recent was the immunosuppressant, Imuran), and I was already on a daily dose of the steroid Prednisone (which I’m still taking.) But, alas, there were still the immunosuppressant Methotrexate and the biologic drug, Remicade. I’d never tried either. I’d had many reservations about Methotrexate, and was worried my insurance wouldn’t approve Remicade, but at this point, was willing to try anything.

Let me also note that, before leaving Dr. Rheumie last week, I also was lectured and chastised: in April 2008 I’d gotten an MRI of my right knee and (oops!) needed to consult an orthopedic surgeon, which I’d failed to do. Really, my knee is  a pain (in both the literal and figurative senses of the word) and has bothered me for, oh, let’s say 15 years now or so. However, with my health having been in the downward spiral that it was (and continues to be) in, fixing my knee was the least of my worries.

However, as Dr. Rheumie read the MRI report, I could see he had a point: Rheumatoid AND Osteoarthritis. Bone spurs. Calcium deposits. Floating meniscus. Cartilage damage. It was quite a list. Then there’s the fact that it has, (excuse my use of a double-negative) never been NOT swollen, occasionally locks up mechanically at a 90 degree angle (until it decides that it feels like becoming physically un-stuck) and has long lost full range of motion. Yeah, why not kill all birds with one stone and add taking care of this old knee to the list?
So, I set up an appointment with an orthopedic surgeon. (Who will from here on out be known as….you guessed it…Dr. Ortho! I’ll be meeting him next week, and, thus, so will you…virtually, at least.)

So you’re all invited on this journey with me as I start my Methotrexate and Remicade treatments, and prepare for (and go through) another knee surgery.

Since you’re along for the ride, let me tell you about my experiences , thus far, with Methotrexate.

I took Methotrexate for the first time on the Friday night after Thanksgiving, merely less than a week ago. This was not without trepidation. I’d heard stories of vomiting, hair loss, rashes,  sinus problems, oh, and had just found out that it is also used for chemotherapy. Awesome!

My boyfriend found me sitting in the kitchen staring at my shiny new prescription bottle with notable reservations. As I read the massive “drug facts/warnings/side-effects/deal-with-the-devil” pamphlet, I had second, third, and fourth, fifth, and sixth thoughts. My boyfriend inquired if I was OK as I sat with my head in my hands.

OK? Yes I was OK! I’m a champ at these things. As admittedly vain as I can be, I’d survived facial paralysis in my sophomore year of college, was long accustomed to getting poked, prodded, and tested, giving myself injections, having blood drawn, and popping pills at dinner. I had to admit, though, this one seemed to have an intimidating list of side effects!

But what are the chances, right??

As my luck would have it, the next morning I woke up with, oh, about 5 of the “symptoms to call your doctor about.” A low-grade fever, sinus infection, wheezing, nausea, muscle pain, sore throat. But, it was a Saturday, and a holiday weekend, so no luck with the calling-the-doc bit. (And yes, Methotrexate pros, I DID remember to take my Folic Acid pill!)

I’m thinking now that it all was a touch of the flu, or a cold of sorts, and I’m still getting over it. (As anyone with an autoimmune condition like RA knows all too well, a cold that is “small” to someone else can affect us tenfold, and with our flaky immune systems, it’s no wonder we aren’t battling the sniffles every hour of every single day!) On Sunday a fairly large clump of hair came out when I was brushing  it. But, it could have been from a knot, which is more likely than being from Methotrexate, and my hair IS known for being difficult, so why not act up now? Sometimes, though, when you hear all of the side effects, it is hard not to wonder, even when you think you’ve trained your mind not to!

So, that was my weekend. Then, on Monday night, I simply couldn’t sleep. Worst case of insomnia ever. Had the chills, times ten. Took a warm shower, did lavender/chamomile aromatherapy (supposed to be calming/relaxing) – I even took Tylenol PM. Was this newfound insomnia from the Methotrexate? I guess I won’t really ever know.

That’s the frustrating thing about starting a new medication. If you do have any “side effects” you may not know if it is coincidental timing or due to the medication. I DID speak to Dr. Rheumie on Monday and he supposed that I’d just caught something and that it was not an infection from Methotrexate – he said that is very, very rare. So, you never know!  I’m going to skip this week’s dose and start back up next week taking 7.5mg instead of 10mg.  We’ll see if I have any “weird” symptoms after that, and, if not, we’ll know that it my “icky” weekend following my first dose of Methotrexate was just a coincidence, and then I’ll continue taking it as prescribed initially.

Today I’m doing OK. My knee has been locking periodically, and my back is sore. I was nauseous earlier, but that is “the norm” for me and likely isn’t from the new meds. I HAVE been very, very dehydrated these past few days – is that even a side effect of Methotrexate? Maybe it’s this cold/flu/virus just leaving my body. At least that’s what I am hoping.

After all of that chaos, the worst part of my starting Methotrexate? The reality check that I got reading the patient brochure. “This is a potent medication. It should only be used to treat cancer and other serious conditions.”

Umm…what?!?!

When you have chronic diseases like arthritis and Celiac, they just become a part of your life. The reality, though, is that they ARE “serious” diseases and should not be treated lightly. Any autoimmune disorder and/or physical disability can wreak havoc on your body and can take a toll on many aspects of your life. I think that seeing it in print, and seeing it associated with cancer, though, momentarily scared the heck out of me! (The following days of feeling far more subpar than usual didn’t help matters much.) I guess you don’t really realize the severity of what you’re going through when it is your version of “normal” and your own reality. This is why I still get caught off-guard when people tell me how “strong” I am – it’s my life!

I’m just dealing with it. You play the cards you’ve been dealt. Still, the intimidating disclaimers regarding Methotrexate put my “cards” in a slightly different perspective, altering my poker-face in just the slightest fashion, but I nonetheless stay strong … and I’m still winning the hand, if I do say so myself!

Other than that momentary gut-check, all is well. I know Methotrexate may take up to 6 months to work, so I’m impatient in that sense. I’m a little anxious about starting Remicaid infusions on Monday. And, I’m nervous for the knee surgeon and what he has to say. I’m also playing a bit of phone tag with my naturopathic doctor. But, such is life! And life must go on!  I’m marching forward with all of these things.

I feel so lucky and blessed to have a supportive and loving boyfriend and family, an understanding workplace, and accommodating and thoughtful friends. My pets bring me joy, I’m looking forward to the holiday season, and I have so much else to be thankful for, as well. I can only remain optimistic and positive through this new journey I’m embarking upon and pray/wish/hope/cross-my-fingers that these treatments will work!
What about you guys? How were your initial experiences with Methotrexate or starting any other new drugs? Any advice for going in for the Remicaid infusions on Monday? Any advice on dealing with dehydration, insomnia, or other side effects? Ever have a “reality check moment” about your condition, as I did? Any words of encouragement?

I’d love to hear your thoughts and comments as I move forward with my new treatment plan. I hope that whatever YOU are doing is working for you!

I also hope you’ll continue to join me on my journey. If you ever wish to share your story privately instead of leaving a comment, or you have any questions or suggestions, you can always contact me via email at: aboynes@arthritis.org

Stay well!

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

voted, “Best Blogger in Pittsburgh!”

“No! Not The Shoes!” A (Humorous) Personal Look at Arthritis and Sacrifice – Ashley Boynes, Community Development Director, WPA Chapter

Disclaimer: The Arthritis Foundation of  Western Pennsylvania always advises that you consult your doctor and take their advice. The essay below is a personal story of one young woman, and a humorous look at how living with arthritis or other chronic illness can affect one’s life in the most seemingly simple, or silly, ways. The AFWPA does not ever endorse ignoring any doctor’s advice….and the author now has to have another orthoscopic knee surgery as a consequence….as they say, beauty DOES come with a price! – AB

“No! Not the SHOES!” – by Ashley M. Boynes

Here’s the thing: in addition to Rheumatoid Arthritis and Celiac Disease, I suffer from a third disease. This condition is called “Chronic Shoe Lust.” Shoes are my sanctuary. And here’s my frustration: I don’t want to give up my cute shoes, even when my logic — and my doctor — tells me to. While they aren’t Manolos, Louboutins, or Jimmy Choos by any means, my closet is filled with pair after pair of (more affordable!) adorable, uncomfortable, and sometimes dangerous-looking shoes. I love them!

Sometimes, it is so hard to be reasonable. It can be especially difficult when you are 26 years old and have a seemingly endless list of rules to follow, what not to do, what not to eat, which medications to take, which supplements are helpful, when the next doctor’s appointment is, and so forth. Add in a pinch of human emotion and a dash of impulsion – and you’re surely bound to slip up here and there.

I have rheumatoid arthritis in ALL of my joints, but my right knee is a particular mess: I have a torn meniscus floating around, both RA and osteoarthritis, cartilage damage, bone spurs and calcium deposits. I’ve lost my full range of motion – my knee doesn’t fully straighten or bend – and it is constantly swollen.  It sometimes physically locks in a 90-degree angle. I have walked with a slight limp since the sixth grade. With no other choice, I’ve gotten used to my not-so-friendly knee and the pain it causes my whole right leg – from hip to ankle.

And this cranky knee? Along with my doctor and family members, it has chastised me time and time again for wearing kitten heels, stilettos, wedges, pointy-toed pumps and other variations of cute and fashionable shoes. These shoes hate me, though. My difficult knee has teamed up with said hip and foot to cause horrendous wear-and-tear to any pair of heels that I slide on to my feet, ruining the shoe by making the heel slanted and bent inward with no hope for repair. This sad display makes me unable to walk in them any further – but yet, as I consider fashion (especially shoes) an art – I do not have the heart to throw them away! That being said, however, I cannot imagine the damage being done to my joint if that is what occurs to each pair of shoes. Hmm…

Now, I AM a logical young woman. I follow my strict gluten-free diet, I take my pills on time, I take my vitamins and rarely miss a doctor’s appointment. I try to take care of myself, and try not to take on more than I can handle.

But I refuse to give up wearing cute shoes. Cute, painful, inconvenient, fabulous shoes!

I’m not sure why this is. I do enjoy the confidence-boost that I get when a stranger compliments me on a particularly stylish pair. It makes me feel good about myself, and I consider shoe-collecting almost a hobby. I know that, given my condition, the “reasonable” and “rational” thing to do is to wear flats, sneakers, or some sort of more “accommodating” shoes. Yet, I wear platform Mary Janes, open-toed kitten pumps, sandals with little-to-no support, and 4-inch stilettos…I just can’t help myself!

I know, I know. I’m “going to kill myself walking in those things.” It’s “no wonder” I limp. “Of course my knee is killing me — look at those shoes!” -  I’ve heard it all. But when I’m traipsing back to the parking garage at the end of the work day, I don’t feel so badly – because I’m joined by countless other women limping along, teetering on the edge of sanity with their sky-high heels. In that moment, I’m not alone.

Could this be why I torture myself with the heels? Maybe a part of me thinks it is easier to hide behind the guise of “it’s just the shoes,” rather than a chronic illness with no end in sight. It’s the blame game — and blaming a physical ail on having fashionable feet is much easier than the reality of the situation. I also think it’s my pride. I want to hold on to any sense of normalcy that I can, since sometimes my life isn’t exactly that of a “normal” 26-year-old. Do I have to give up something that, as silly as it is, makes me happy?

I know that I’m being stubborn, and I’m probably hurting my knee further, but here’s how I justify it: I’ve sacrificed enough. I have given up pizza, beer, “regular” baked goods, my beloved Twizzlers, and, really, any sense of being carefree. I’ve sacrificed sports. I’ve sacrificed nights out with friends. Isn’t it OK to be stubborn just this once?

I know there are far worse things that could happen in life – after all, they’re only shoes. But shoes are something I can control. The other things that bother me about chronic illness are things that I might not be able to change, ever, even if I want to. So forgive me for wanting to hold on to my shoes. After all, I need to be well-heeled while I take the steps to kick these symptoms!

What do you think, reader? What have you sacrificed because of a health condition — trivial, or serious? Do you ever “cheat” and stray from what your doctor says, like I do with my shoes?  As always, I want to hear your comments…and I’m sure I’ll be blogging before and after the surgery that my unfortunate shoe habit has, in part, led me to have to schedule. Have a Happy Thanksgiving from all of us at the AFWPA, and we hope you enjoy reading our blogs as much as we like writing them! We are “thankful” to have you as readers and as supporters of our chapter as we fight to spread awareness about arthritis and to provide a community of support for anyone suffering from one of the 117 types of arthritis & related illness! Again, comments are always welcomed and encouraged.

 

Be Well,

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

voted, “Best Blogger in Pittsburgh!”

PS: Are RUNNING SHOES more your style? Be sure to sign up for our December 12th Jingle Bell Run/Walk! This 5K takes place in Pittsburgh’s North Shore and should be a fun time — all for a great cause!

Be a Warrior: Overcoming Arthritis – Ashley Boynes, Community Development Director, WPA Chapter

Overcoming the obstacles that arthritis presents isn’t “easy” for anyone!

Difficulties show up for people of all ages and ability levels. I can say, however, that overcoming arthritis IS something that definitely can be done! As author Melinda Winner (“Cooking with Arthritis“) once said, we are arthritis survivors – not arthritis sufferers. Many “warriors” (as I like to call us) deal with chronic and sometimes debilitating pain and illness on a daily basis, but we fight through it.

This week’s Arthritis Radio guest, Pennsylvania State Representative Jennifer Mann is one example of a person who was diagnosed with arthritis at the young age of 2 and who is thriving and flourishing in spite of her condition. Last week’s guest blogger and Arthritis Radio interviewee, Miss Three Rivers 2010, Shauna Rice, is another example of a young person who’s taken control of her life despite her chronic pain from polyarticular arthritis. I personally have a friend in Texas named Kim Satterwhite who battles Sjogren’s Syndrome (one little-known form of arthritis), severe back pain, and fibromyalgia…yet; she manages to devote herself to teaching first graders and maintaining a positive attitude while dealing with her personal physical struggles, and fundraising/advocating for her disease!  She is not only a friend but an inspiration to me.Also, take a look at chairman of our board, Jim Taylor. By age 50, he had both hips replaced due to osteoarthritis and is a positive and inspiring man, nonetheless, who, with our chapter, is doing great things to help further arthritis awareness. We’ve had amazing and inspirational honorees for our Fall Arthritis & Wellness Walk (Deora Matvey, Mona Britz!), and the upcoming Jingle Bell Run, (Maddie Genest!) as well as past events. My “Nana” and my young aunt both deal with Rheumatoid Arthritis, and so does my AF co-worker Lori Knapp — all strong women. I too deal with Rheumatoid Arthritis and Celiac Disease, yet, we ALL manage to be strong, stay positive, and continue on with our daily lives. This just shows that YOU TOO can overcome arthritis!

I’m not saying it is easy. There may be days where you hurt, can barely move, and feel ill. On these days, remember the good things. Some days are harder than others. Aside from the physical pain, stiffness, and inflammation, there are emotional struggles that come along with it, as well as occasional complications, coexisting conditions, or side effects from medications. Yet, there is so much you can do to not let your illness take control of your life!

As I’d mentioned in my portion of Arthritis Radio last week, I think it is important to find things that you love to do, and to surround yourself with a strong support system of people that you love. Some people find solace in also joining support groups. In fact, any group you can join or hobby that you find provides a great outlet for dealing with invisible illness and chronic pain. The Arthritis Foundation offers land exercise, water exercise, and self-help programs, as well as awareness sessions. There are many online communities that you can join for support from all over the world.  Your feelings of isolation will go away as you communicate with people through blogs, social networks, and other virtual mediums — you are not alone!! Yoga, tai chi, Pilates, or dance classes are also great ways to stay active and build up a new network of friends! Some people enjoy scrapbooking, others like gardening, and others like reading, journaling, sports, or animals. Find something that interests you, that soothes your soul, and that makes YOU happy.

After all, as drugless practitioner and nutritional health counselor Janet McKee said in a past Arthritis Radio episode — a positive attitude and a positive lifestyle of wellness can truly affect your health. And through it all, never forget – laughter is the best medicine! So if you are feeling down in the dumps, smile, and keep a positive attitude and a sense of humor. You have arthritis – it doesn’t have to have you! Being diagnosed with a chronic illness such as arthritis  is not a life sentence. Remember this. Sure, you’ll have to make adaptations, and you’ll have some bad days – but try not to let that consume you.

** I want to hear what you do to “overcome” in the face of adversity! Please leave a comment and share YOUR thoughts and triumphs with us! Also, don’t forget to check out this week’s Arthritis Radio!

Stay well,

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

voted, “Best Blogger in Pittsburgh!”

Beautiful Inside & Out: Shauna Rice, Pageant Queen…With Arthritis! – Ashley Boynes, Community Development Director, WPA Chapter

It is rare that I ever meet another person who is close to my own age and suffering from Arthritis. When I heard local pageant queen Shauna Rice had arthritis as well and does work with the Arthritis Foundation, I was intrigued. I befriended Shauna on Facebook, and we quickly took to comparing notes about living with and coping with this debilitating and multisystemic condition as thriving young adults.

At this weekend’s Bone Bash Gala, I had the pleasure of finally meeting Shauna Rice in person. I learned that we have a lot in common. We chatted throughout the Gala and I couldn’t help but think that we’re doing pretty well for being in our 20’s and having rheumatoid arthritis and coexisting complications. I saw qualities in her that I strive to have in my own life — being strong in the face of adversity, wanting to help, educate, and inspire others, and wanting to use our talents to increase arthritis awareness.

Like Shauna, I live with some type of pain or another, every day. If it isn’t the rheumatoid arthritis, it is neurological or gastrointestinal complications from my other autoimmune condition, Celiac Disease. Like Shauna, there are some days where I physically don’t have the strength, energy, or will to get out of bed — but, I always do, as does she. However, we both have managed to turn negatives into positives. I can relate to her in wanting to do so. She has reached so many through her work with the Miss America Organization, and is an inspiration to so many people, including myself. I have reached people through the written word. I use my writing to reach out to those who may be suffering from arthritis or another chronic pain or autoimmune condition. Shauna’s talent and passion is dance, which she amazingly manages to do even while living with this sometimes-disabling condition! My career path has led me to the Arthritis Foundation, where Shauna volunteers. I use social media and writing to spread the word about arthritis, Shauna uses pageants and competitions. I think that are both trying the best we can to inspire and motivate others while fulfilling our own personal goals. It is sometimes hard to stay strong – and I know that she would likely agree.

I think that we are both trying to deal with our illnesses with a smiling face and a gracious attitude.

Shauna is going to be our next Arthritis Radio guest,  I’m sure she’ll have much to say. Check Arthritis Radio often – her interview will be up this week on http://arthritisradio.podbean.com and available on iTunes as an Arthritis Radio podcast. She hopes to increase awareness that children also get arthritis. (Like me, Shauna started experiencing arthritis symptoms around age 10.) Ms. Rice was kind enough to do not only a podcast, but also contributed a blog write-up for us to share. Please read on as she shares her motivational story. Also – mark your calendars for this Friday! Shauna is hosting an “Art for Arthritis” event at Elixir Ultra Lounge from 5pm-10pm. Proceeds will benefit the Arthritis Foundation and it is sure to be a good time. More info can be viewed, here.

Thanks for reading – and please, feel free to comment! We will both enjoy reading your thoughts & feedback.

Stay well,

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

Shauna’s Story – written by Shauna Rice:

It’s hard to recall when I was first diagnosed because it was over 10 years ago, but there are a few things that do stick out in my memory. It all started when I was in 6^th grade and had a very swollen knee. It was painful and I couldn’t bend it. I remember limping around. As a dancer, my family just figured there are plenty of ways I could have injured my knee. When the swelling went down and I woke up with giant, swollen hands, my mother (an RN) knew something was wrong. When we arrived at the pediatrician’s office I knew it was something serious by how frantic the doctor and staff were. They sent me to Children’s Hospital. I was told I had rheumatic fever, which is a disease that attacks the joints and heart. My joints continued to take turns becoming inflamed and a strange rash accompanied the pain. After weeks of visits with doctors like cardiologists and rheumatologists, blood work, and other testing, I was told that the disease didn’t affect my heart, but it did affect my joints. I was diagnosed with juvenile arthritis. At the time, all this meant to me was that my joints hurt, I had to take pills everyday, and that I had to visit a rheumatologist (and I didn’t even know what that was) once every 3 months. I had no idea what this progressive disease would cause in the future.

The older I get, the worse my arthritis gets. It’s hard for me to realize that not everyone feels how I feel. Not everyone hurts every day. I catch myself wondering what it would be like to not feel some type of pain every day. However, over time I’ve learned what triggers the pain and what eases it. The cold weather is the worst. Air conditioning kills me! I try to keep warm as much as possible and hot baths always help. I also use heating pads. I am very fortunate though because my condition could be much worse. I have pain and occasional swellings, other sufferers of arthritis aren’t so lucky. I also deal with fatigue and depression. Arthritis affects one physically, mentally, and socially. Some days I just don’t want to get out of bed. It’s cold, I hurt, I have no motivation. Arthritis has made me a stronger person. I know I have to motivate myself to get out of bed and live my life! I cannot let arthritis control my life.

However, I thank God for my arthritis because so many amazing things have come from it. I became involved in the Miss America Organization, where I’ve taken on the platform “Kids Hurt Too: Juvenile Arthritis Awareness”. This lead me to the Western Pennsylvania Chapter of the Arthritis Foundation where I’ve met so many wonderful and helpful people. This not only increased my fundraising efforts and community service, but helped me learn more about the condition I suffer from and receive better treatment. I live a healthier lifestyle because diet and exercise affects my arthritis. One of the most important things it has caused is for me to be a role model and an inspiration to others living with arthritis. For so many people seeing is believing. When they see me living with this disease and continuing to dance, stay active, compete for Miss Pennsylvania, try to make a difference, raise awareness and more, it inspires them to do the same. I’ve had children with arthritis be excited and shocked to hear that I am a dance teacher. It gives them hope. Living with arthritis has allowed me to find my passion, my work, and myself.

- Shauna Rice

Miss River City 2010

Don’t forget to check out ART for ARThritis at Elixir in the Southside – THIS Friday from 5pm-10pm.

Psssst….PS: Want to check out photos and articles on Saturday’s Arthritis Foundation BONE BASH GALA event which was mentioned in this blog?

Click here for the Pittsburgh Post Gazette Write-Up!

Click here for the Maniac Magazine photos!

Click here for the Tribune Review Fanfare Write-Up and Pics!

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