Advocacy Summit 2011

I participated in the Arthritis Foundation Advocacy Summit 2011 in Washington DC. It was a great experience and I believe I made a difference. Kevin Mandrell and his wife, Annette were the other representatives from Indiana. Together we visited each of the eleven offices of the Senate and House represented by Indiana. We met with Representative Burton and then with everyone’s Legislative Directors or Assistants. Most seemed genuinely interested. As the government is undergoing drastic budget cuts right now, no one was making any commitments, but they were all receptive to continuing contact with us which was promising. Our goal was to give them information and discuss our four agenda items:

         

    

1. To join the Congressional Arthritis Caucus and continue to fight to maintain our national investment in arthritis research. As a result of our visits, 17 members of Congress have signed up as of March 4th.
2. Make Arthritis a National Priority. To help stop arthritis and add it to your national and local discussions on chronic disease. To support programs to help Americans manage arthritis and help prevent further disability. Arthritis is the leading cause of disability in the U.S. resulting in $128 billion dollars of medical expenses and lost earnings each year. We distributed form letters for President Obama and Secretary Sebelius for the legislators to sign and mail.
3. To support the National Institutes of Health and National  Institute of Arthritis and Musculoskeletal and Skin Diseases as well as the Childhood Arthritis and Rheumatology Research Alliance. These agencies are making great strides in arthritis treatment and prevention and need to be supported now for cost containment and disease reduction in the future. Currently one in five Americans has arthritis and 300,000 children. In another 20 years that is projected to become one in four or 25% of Americans. According to the CDC 1 in 20 working Americans will have to change their job due to arthritis. I am one of these working Americans currently going back to school to start a new career because the one I love is too strenuous with my arthritis.
4. To urge federal investment in arthritis research through Congressionally Directed Medical Research Programs at the Department of Defense. Veterans are returning from service with a 50% increased risk for arthritis. Most of them are afflicted with osteoarthritis from the wear and tear from their equipment and injuries.

The Arthritis Foundation provided an excellent training program to prepare all of the Advocates. It was great to network with others and get fresh ideas. The AF staff of Amy Melnick, Jennifer Taylor McBride, Laurie Markle and Kimberly Beer made the education fun and inspiring. The physician speakers prepared the group with the newest information on arthritis developments and treatments to present to the congressmen. I look forward to next year’s program and to my continuing efforts this year with my legislators.

- Treva

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Meet James Bicos, M.D. Our Medical Blogger!

Name: James Bicos, M.D.

Hometown: Addison, IL (suburbs of Chicago); currently lives in Carmel, IN

Profession/Practice: Orthopedic Sports Medicine Fellowship Trained Surgeon with St. Vincent Orthopedics/St. Vincent Sports Medicine

How has arthritis affected your life or how do you help people with arthritis:  I help people with arthritis every day. That makes up 90% of my practice. Since I am on the sports medicine side and see young athletes, I feel that I have an extra incentive (and duty) to keep them healthy and prevent arthritis from taking over their joints.

How long and in what capacity have you been connected to the Arthritis Foundation:  I have been associated with the Arthritis Foundation for the past year, donating to the Research Advocate campaign. I have also represented St. Vincent at the 2010 Evening of Appreciation when St. Vincent was recognized for becoming the first every Indiana Friend of the Foundation.

Why do you (volunteer, donate, work, etc.) with Arthritis Foundation:  Being an Orthopedic Surgeon, arthritis is part of my job every day. I have a motto that “I am stomping out arthritis, one joint at a time!”

A little about you: Dr. Bicos is a member of St. Vincent Orthopedics and the St. Vincent Performance Center. He concentrates his practice on the specialized needs of athletes of all ages. He has received extensive training in cartilage restoration, shoulder replacement surgery, complex shoulder arthroscopy (including rotator cuff tears, shoulder dislocations and multi-directional instability), knee ligament reconstruction, and patellofemoral instability. He is currently the team physician for Park Tudor High School and University High School. He is a consulting physician for our USA Gymnastics, USA Track and Field, and USA Diving teams. He has been the head team physician for the USA Men’s and Women’s Worlds Gymnastics Championship Teams for the past two years, representing the United States in London and the Netherlands. He has also served the United States Olympic Committee as a Medical Volunteer at the training camp in Colorado Springs, CO. He has authored numerous peer-reviewed publications and chapters, and has multiple ongoing clinical and biomechanical research initiatives.

Dr. Bicos earned his undergraduate degree in Biomedical Engineering at Northwestern University, Evanston, IL. He attended Rush Medical College (Chicago, IL) where he earned his medical degree, and then completed his Orthopedic Surgery residency at Rush University Medical Center in Chicago. He then went on to sub-specialize in Orthopedic Sports Medicine, completing a fellowship at the University of Connecticut, and now is a member of St. Vincent Orthopedics and Sports Medicine.

Dr. Bicos is a native of the Mid-West region, having grown up in the suburbs of Chicago. He is married and has two children. He enjoys playing golf and remote controlled model aviation, in addition to spending time with his family and friends.

What you will be blogging about: Dr. Bicos will be providing general health information related to arthritis and orthopedics. 

If you have a question you would like Dr. Bicos to answer you can comment on this blog or email Kendall Rich Horvatich, Special Events Coordinator for the Arthritis Foundation, at krich@arthritis.org.

Meet Treva Strasen Our Northeastern Indiana Blogger!

Treva at the 2011 AF Advocacy Summit

Name: Treva Strasen

Hometown: Fort Wayne, Indiana

Arthritis Condition: Fibromyalgia

Diagnosed in: 1993

How has arthritis affected your life: Fibromyalgia has changed my life on all levels. The activities I previously enjoyed are too strenuous to participate in now so I had to change my physical activities and hobbies. I live every day in constant pain. My body is slow, weak, tired and heavier than before I got sick. The medication and sleep problems slow my thinking and memory. I am currently going back to school so I can get a less strenuous job.

How long and in what capacity have you been connected to the Arthritis Foundation: I have been involved with the Arthritis Foundation since 1994. I have been teaching Arthritis and Fibromyalgia Self Help Classes and I run a monthly Arthritis and Fibromyalgia support group. I am on the AF Northeastern Indiana Leadership Council. I do some public educational teaching and public health fairs for the Arthritis Foundation.

Why do you (volunteer, donate, work, etc.) with Arthritis Foundation: I volunteer with the Arthritis Foundation because I want to educate others with arthritis and fibromyalgia and help them to cope with its everyday challenges. I suffer from fibro and have a nursing degree so I feel I have a lot to offer.

Advice you have for others: Take control. Be a partner in your health care.

A little about you/What you want to know: I am a mother, wife, sister, nurse and patient. My fibromyalgia affects my family and me. They have had to adjust because of my limitations. I am not able to participate in the activities I once used to. I have had to find new hobbies and activities. My rheumatologist has tried many medications out on me with little success. The side effects often outweigh the benefits. I participate in a warm water therapy class and try to balance my work and rest the best I can. I have taken up golf and joined a book club for entertainment. My family is very supportive, though with my boys moving out of the house I miss my helpers. I am currently going back to school so that I can find a more appropriate job that is less physically strenuous. I am an Ambassador for the Arthritis Foundation and am getting more active educating and communicating with the legislators in our state. It is important to make sure that Arthritis is addressed on the national level as a major health care problem. I am interested in new medical advancements in arthritis management.

What you will be blogging about: Coping with arthritis and fibromyalgia, current Arthritis Foundation events and education. 

Things I Took for Granted Before Arthritis

When I tell people I have Systemic JUVENILE Rheumatoid Arthritis, I often get a quizzical look. That's right, people think, "Hey, lady, you're 27-years-old. There's not much juvenile about you." And while this is true, my diagnosis at age 17 gives me the unique experience of being diagnosed as a "child" but living with the disease as an adult. 

I was incredibly lucky to make it through my adolescence relatively unscathed. I was healthy and happy for my childhood and many of my teen years. I was able to complete my physical education classes without needing accommodations. I was able to write my English paper rough drafts while gripping a pen in my hand. I was able to open jars of paint in art class without having to ask for help. All of this makes me incredibly lucky. 

There are so many things I took for granted before my JRA diagnosis. Here, in no particular order, is a list of things I took for granted while I wasn't flaring: 

The bottom of socks. That's right, just the bottoms. When my first major flare happened, I could barely walk, so I would shuffle around my house. While doing this, I managed to wear out the bottoms of almost every pair of socks I owned. Truth.

The ability to brush my teeth by myself. Have you ever tried to open a tube of toothpaste during an arthritis flare? You can barely grip a handrail, let alone something small like a toothpaste cap. 

Being medication free. I miss the days where I woke up and was able to drink water without having to choke down a bunch of pills with it.

Bending. Bending anything. Bending at the waist to pick things up, bending my elbows to put a coat on, bending my fingers just because I want to...

Buttoning pants. This is interchangeable with buttoning tops, pulling zippers up and down, and generally putting on any clothes that require movement. 

Things not popping. All of the sudden, I can pop anything... neck, toes, jaw, fingers, hips, etc. It's a fun party trick but it gets rather annoying when you roll over at night and everything crackles. 

My appetite. At one point, I was dropping weight in a hurry, and not on purpose. My diet turned into consisting of solely Slim Fast Shakes mixed with a ton of highly caloric full fat ice cream. Vitamins, minerals, calories, and fat. Actually... that sounds pretty good right about now... 

- Angela

 Read Angela's Bio 

Walk with Me to Cure Arthritis

2011 Walk Committee & Staff

This past Thursday, we had our monthly Indianapolis Arthritis Walk® Committee meeting. I’m always so impressed with the volunteers and staff that sit around the table in our meetings. The passion, enthusiasm and spirit are invigorating and always lift me up. Because of these volunteers, we’re one step closer to a cure. It’s hard to talk about the business of the Walk when you are in a room of such amazing people!

But, we do have a job to do:  Put on the best Indianapolis Arthritis Walk® we can. I love this year’s theme, “Walk with Me to Cure Arthritis.” This event is key to raising not only money for arthritis research, programs and services, but also creating an understanding about arthritis and related conditions. In addition, we want to offer opportunities for those with these conditions to lead a better life.

Our to-do list is pretty lengthy, starting with securing sponsors for the walk. We have an excellent sponsorship package available, with levels from $150 to $10,000. Even at the $150 level, the benefits include listing on the t-shirts, recognition in the statewide newsletter that goes to over 7,500 people , and the opportunity to contribute to a promotional item for participant goody bags.  Not bad!  

Be sure to come early this year, because we have plenty of great activities. We are hard at work building a bigger Health and Wellness Fair.  This area will feature clinical medicine, health related non-profits, and wellness practitioners that offer goods and services for those with arthritis. Interested in a booth?  They start at only $300. Contact Kendall krich@arthritis.org or B.J. bfarrell@arthritis.org to reserve your space!

Arthritis Sufferers Kate & Furry Murry Fish Head

A returning feature this year is the Doggy Den. Dogs can join in on the fun in their own zone that celebrates the unique relationship dogs can have on those who have arthritis. After all, exercise is key to reducing pain, and what better way to walk than with a furry friend. We know that dogs get arthritis, too. Check out the picture of me and my dog Furry Murray Fish Head, an arthritis sufferer himself. We’re quite a pair with our arthritic hips, but we make it on regular walks anyway!

The Kid’s Zone sponsored by Merchandise Warehouse continues to grow, too! Home Depot will be back with their cool craft projects and a magician is on board. In this area, not only do kids get to play, but there is also a lot of great information on children and teens and living with arthritis related conditions. Thanks to the Peyton Manning Children’s Hospital at St. Vincent the K-ID’s BMV van will be back as well making free child ID cards.

Really, what’s there not to like about all of this activity on an early summer evening along the beautiful Indianapolis Canal? Stroll at your own pace as far as you’d like to go, follow along with the band The Scoop, and enjoy the festivities while contributing to finding a cure.  The entire family will find activities they’ll enjoy.

Mobiles

I hope you’ll start a team like I did or register for the walk on June 11th. It’s very simple to do. Go to www.ArthritisWalkIndy.com, click Sign Up and then Start a Team. We know that asking for money from others can be difficult, no matter how much you believe in the cause. So, there are all sorts of cool tools to use, including an email template, facebook and twitter applications, and a way to set up your own website. In addition, the Arthritis Foundation, Central Indiana Branch has mobiles and scratch off cards available. Sell the mobiles, available in round or bone shape, for any amount and have the donor write there name on the bone. Then, bring your sold bones to the Walk to be displayed in the Mission Area. New to the Arthritis Walk® this year are the scratch off cards. Each card has 35 circles with dollar amounts ranging from $0-$5. Ask friends and family members to scratch off a circle and donate the amount uncovered. If you get every circle uncovered you will have raised $100 and an official Arthritis Walk® t-shirt! To order fundraising supplies for free contact Kendall at krich@arthritis.org or 317.879.0321 x207.

Scratch off cards front and back.

Mark your calendars for our Indianapolis Arthritis Walk® Kick-Off event on April 14th at The Mansion at Oak Hill. The event begins a 6 p.m. RSVP by April 7th to Kendall at krich@arthritis.org or 317.879.0321 x207. It’s a great way to get your team in gear and ready for the Walk! This year at the kick-off we will be handing out service awards to team captains who have been with us over the past six years.

I’ll have more updates for you soon. Stay in touch and “Walk with Me to Cure Arthritis!”

Together, we can overcome.

Kate

Read Kate's Bio

Jazzercise Helped Me Win! Now, I Have Arthritis, but Arthritis Doesn't Have Me!

Angela is pictured third from the right.

When I was diagnosed with Systemic JRA at 17, I was already less than active. Other than high school gym class, I was not much into exercise. Even worse, it took almost three months of no mobility before I was diagnosed. Once I started steroids, I felt wonderful again -- physically. But, I fell into the dreaded fat-skinny person category -- I looked skinny but it wasn't muscle, and I wasn't healthy. 

In college, I tried hitting the gym, but it was never consistent. Despite having an athletic facility just a five minute walk from my dorm, I never wanted to go. 

I started working out for a really vain reason -- I'd started gaining weight when I was student teaching, and by the time I graduated, none of my clothes fit. My mom suggested Jazzercise -- a workout program she had done years before, so we went together. After a week, I was hooked. I went from doing two classes a week to three to five. It wasn't about weight loss... it was about moving and finally, finally having energy again. The more I moved, the better I felt. I'm lucky. I'm able to move and jump and lunge and squat with relative ease, which, I know is not the case for so many with our disease. After a year of taking class, the owner approached me and asked if I had ever considered being an instructor. 

The arthritic aerobics instructor. That's what I've become. I currently teach three classes a week, and while I may not move quite as well as someone without arthritis, I still move. 

It's such a catch-22. You have to move to feel better. But it's hard to move when you feel so incredibly miserable. Moving will give you energy. But you have to have energy to move. I get it. It's complicated.

The best, and, only, advice I can really offer is to move. Move as much as you can in whatever way is comfortable. Take a lap around the kitchen table a few extra times a day. If that feels okay, go around the block. If that's not a struggle, try an elliptical. Find a yoga class you like. Go for a bike ride with your kids. But do something. Move in some way. Because otherwise, the arthritis wins. 

Two summers ago, I started running. Never had I EVER considered myself a runner. It was out of necessity -- something I started on a vacation where I had to move. I don't pound my feet into the ground, and there are days that my knees and hips hurt afterward, so I don't push myself to my limit. I don't run fast, I don't even run far, but I run. I don't run to prove anything to anyone else. I don't even run to prove anything to myself. I don't run to spite my arthritis. I run in spite of it. 

I have arthritis. But arthritis doesn't have me. And I intend to keep it that way. 

- Angela
 Read Angela's Bio