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News for friends of the Arthritis Foundation, Great West Region
August 2012

 

Articles This Issue

Tales of Joint Replacement
Three local joint replacement recipients share their tales of the good, the bad and the real things to consider when facing a looming arthritis-related joint replacement. Hear their stories

Postcards from Camp
Kids with juvenile arthritis had a blast this summer at three of the Great West Region’s juvenile arthritis camp programs. Read about the fun!

Healing Hands for Aching Joints
Pain relief, relaxation and stress reduction are just a few of the benefits two local women with arthritis have experienced from the therapeutic touch of massage therapy.  Read more

For All Those That Care
Gene Overfelt and Charity Lawson, two people who provide care for family members with arthritis, share their viewpoints on the unique challenges of arthritis caregiving.  Discover their perspectives

Advance Arthritis Research by Enrolling in the Arthritis Internet Registry
The Arthritis Internet Registry is an easy way to help researchers better understand and potentially cure this disease. Learn more

Why I Volunteer…
After juvenile arthritis made a massive impact on her family’s life, Kim Gent learned how to help others by sharing honest perspectives of arthritis. Read her story

Countless Ways to Get Involved
Make an impact for our mission! The Arthritis Foundation has a wide variety of ways that anyone can get involved. Find out how

Foundation Facts

Get Connected

 

 


 

Tales of Joint Replacement

A 61-year-old former professional tennis player… a 30-year-old mother diagnosed with arthritis at the age of eight… a 55-year-old woman with osteoarthritis in her hip… these are just three of the varied stories of joint replacement surgery. These three people sat down for interviews to offer their joint replacement perspectives based on their own experiences.

 

Bill
Bill Bennion (pictured right) was a professional tennis player until he tore his right lateral meniscus at age 20 in 1971. Bill underwent a variety of procedures to attempt to repair his knee over the decades that followed. None of these provided a long-term solution that could keep his pain and limitations minimal and his activity level at his ideal state. After much consideration, he had a total knee replacement in February of 2012.

Bill says, “Prior to my knee replacement I had noticeable limping when I walked. I had some regular pain. I had a loss of some of my quality of life and couldn’t do the things I used to do, liking walking and playing tennis.”

He continues, “I was scared at the idea of having a total knee replacement. I was concerned that my quality of life wouldn’t be the same after the surgery. I was worried about the length of convalescing post-surgery and the pain I would have. I really expected that I wouldn’t be able to do normal things that I like to do anymore at the same level, like mountain biking, golf, tennis or hiking.”

 

Rebekah
Rebekah Petrick was diagnosed with juvenile rheumatoid arthritis at the age of eight. She entered a period of remission in her teen years, but was then diagnosed with adult-onset rheumatoid arthritis at age 21 and later diagnosed with osteoarthritis as well. Her right hip had significant deterioration, and surgeons repositioned her hip with screws. But after giving birth to her children, Rebekah knew that a total hip replacement would be in her future. In August of 2010, at age 30, Rebekah had a total joint replacement of her right hip.

She says, “I did have a lot of difficulty having kids because of my right hip. Once I had kids, too, it became even harder to take care of them, play with them and do everyday activities. By 2004, I wasn’t walking anymore, the pain was that bad. I didn’t want to do a hip replacement too soon, but my hip was bone on bone and my quality of life was completely affected by the deterioration of my hip.”

“The idea of a foreign object being surgically implanted in my body was a weird concept,” she says. “And there’s always anxiety when going into the unknown. But I wanted relief from my pain, and I wanted to be able to walk again.”

 

Barbara
Barbara Hammermeister was diagnosed with osteoarthritis at age 45, particularly in her right hip. She’d had symptoms of osteoarthritis for ten years prior. Once diagnosed, Barbara educated herself about the ways she could manage the disease and strengthen the muscles surrounding her hip. She started seeing a personal trainer and began exercising regularly. Despite her efforts, in 2008, at age 55, Barbara had her right hip replaced.

She says, “I wanted to wait as long as possible to have my hip replaced. The technology keeps getting better and better… but in the end I waited too long.” Barbara continues, “I kept plugging along for ten years despite the fact that my pain was getting worse and worse. Like a lot of people, I continued to tolerate the pain for a long time and just thought I would keep getting used to it. Finally, I went in for a doctor’s appointment where they took x-rays. The doctor took one look at the x-rays and turned around and said ‘When do you want to get this hip replaced?’ Three months later, I was in the hospital having my hip replaced… it had degraded that badly.”

She says, “I knew the hip replacement surgery was a necessary evil. I just wanted to get it over with. I was also worried about having to get anesthesia, that’s always a major risk with surgery.”


Surgery & Recovery
Bill, Barbara and Rebekah’s surgery and recovery experiences each had unique results.
 
Rebekah (pictured left) offers, “My hip replacement surgery went very smoothly. I had more difficulty with recovery. I wasn’t walking for eight years prior to my surgery and all my muscles and ligaments had lost strength. It took me quite a long time to build my muscles and recover well enough to realize it was a good decision.”

“I knew the surgery itself would be hard. I knew there would be pain associated with it and that recovery would take time,” Bill says. “When I first woke up from surgery, the pain wasn’t bad because of all the pain medications. Of course, once I got home and started weaning off the pain meds it was more painful, but by three weeks after my surgery I was pain free.”

Barbara remarks, “I woke up from my surgery and instantaneously felt like my pain was gone. I knew it had nothing to do with the sedation… the pain and ache I had lived with was gone.” She continues, “The biggest challenge was realigning the muscles in my body during my recovery. My gait was off because my body had been compensating for so many years for my bad hip. The physical therapy process was so important for me to treat and train my whole body to walk post-surgery.”


Quality of Life
Evaluating the differences in their quality of life is something that Rebekah, Bill and Barbara do often.

Barbara says, “The first day I walked back into work after my surgery and recovery my boss said, ‘This is the first time I’ve seen you where you didn’t have pain written on your face.’ That was a clear sign to me of the difference the surgery made. I live my life now and don’t plan it around pain. The surgery, for me, was like turning back the hands of time. I’m now regaining the mobility that I had 15-20 years ago that I hadn’t realized that I’d lost.”

“My knee is still stiff and I can’t bend it as well. I still have muscle atrophy in my right leg that will take time to get back,” Bill says. “But my quality of life is better because I don’t limp as much and don’t’ have pain. I’m more active now and do the things that I like doing.”

Rebekah says, “Things like getting in and out of the car, vacuuming, and picking my kids’ toys up off of the floor is so much easier now – it’s priceless. I’m completely grateful for my better quality of life now; it’s like night and day.”


Advice
All three of them have strong advice for those who are facing their first joint replacement surgery.

Bill says, “Don’t do it until you have to; it’s very drastic. Your body will tell you when it’s time for the surgery. Plan on it being a half year before you are fully functional again and comfortable with your new joint. You’re never going to be what you used to be, but you’ll be better than you are currently.”

Rebekah offers, “Do it. Nothing compares to the quality of life that you’ll have after the surgery. The positive completely outweighs the negative of hip replacement.”

Barbara adds, “Do it sooner than later… don’t wait. Do everything and anything you can to make yourself as physically strong before surgery as you can. It will pay off and your recovery will be easier.”


Today
And where are Bill, Barbara and Rebekah now?

Rebekah works two days a week in a health club. She is always on the move, whether its riding her bike, taking Zumba Gold classes, kayaking, swimming or grocery shopping (without crying after 20 minutes because of the pain). “I feel like I’m in my 20’s now, not in my 80’s like I felt before.”

Bill was back to work in two weeks after his joint replacement surgery, and back on his mountain bike two and a half months post-surgery. He counts mountain biking as his sport of choice now. He’s also playing tennis, golf and hiking regularly.

Barbara (pictured right) completed the Seattle Rock and Roll Half-Marathon 8 ½ months after her hip replacement surgery.


For More Information
There are many things to consider before having joint replacement surgery. Your medical team can provide you with information on the many variety of options, whether they are surgical or non-surgical treatments.

The Arthritis Foundation has a variety of resources that can help if you feel that joint replacement surgery may be in your future.  Visit our website and watch for scheduled education events designed to provide information and opportunities to talk to surgeons and other medical professionals about joint surgery. The Arthritis Foundation offers resources to help you such as pain and stress management related brochures, as well as a guidebook for joint replacement surgeries to name a few options. The Arthritis Foundation can also provide local listings of Exercise, Aquatics, Tai Chi or Walk with Ease programs that can help increase mobility and strength and reduce joint pain.

Contact your local office of the Arthritis Foundation for more information.

 

 


 

  

Postcards From Camp

Kids with juvenile arthritis had a blast this summer at three of the Great West Region’s juvenile arthritis camp programs.

 

Arthritis Foundation’s Camp JAM (Juvenile Arthritis Matters!)

Camp Canby Grove, Canby, OR
July 20-22, 2012
50 families; total of 220 people. Thirteen families were new to the program.

What was new this year?
Two behavior psychologists from Oregon Health & Science University Pain Department came and donated their time to speak with parents about living with children who are in chronic pain. Parents were more than thrilled about their topics and advice.

What did campers learn?
Campers learned how to make Alka-Seltzer and photo canister rockets. It was astonishing and hilarious. Parents learned different “tricks” to help with troublesome behavior in their children.

What were the most popular activities?
The OMSI Mobile Planetarium (made possible by a donation from Reser’s Fine Foods). The planetarium came out and set up a mobile dome and projected a short video on the inside about telescopes. Then amateur astronomers brought in large telescopes so the kids could see different constellations and planets and put what they learned in the planetarium to work. The highlight was seeing Jupiter. The telescope was so powerful that the kids could see the large circular spot (or storm) on the surface!

What was the most played song at camp?
The most sung artist at the camp talent show was Adele. Three very brave girls each sang one of her songs! And you could hear many, many campers, parents and volunteers humming the songs all weekend.

What’s a memorable quote from Camp?

Ellie, age 11, “I really liked listening to the older teenagers talk about how they deal with their arthritis. I learned how to be more positive and not focus on my pain.”

 

JA Camp Limberlimbs

YMCA of the Rockies in Estes Park, CO
July 21-26, 2012
43 campers

What was new this year?
We had a bullying education session for the first time this year. Kids face so many bullying challenges in school and online these days, and having arthritis doesn’t make it any easier. We wanted to give them the tools to combat the issue.

What did campers learn?
This year there was a strong effort to teach kids about the effects of bullying. Kids went through a series of activities to show that everyone is the same and it hurts when we say mean things. This was incredibly valuable for the kids.

What were the most popular activities?
Each year the group heads into town to enjoy a night of bumper cars, go-karts and putt putt golf. However, the highlight each year is the balloon fight. Kids are given the opportunity to sling-shot balloons (through a cage) at one another. This year kids were not deterred by the pouring rain and 55 degree weather. If anything, it was encouraging to get the other team even more wet and staff was prepared with raincoats!

What was the most played song at camp?

Jump on It by Sir Mix-a-Lot. The last night of camp the kids get to stay up later and this year a spontaneous dance party erupted. The Junior Counselors led the entire camp, all 43 campers, in a choreographed dance to “Jump on It.” The night continued with line dancing, break dancing- everyone had a blast!

What’s a memorable quote from camp?
“Camp Limberlimbs is the best. You feel like yourself and don’t have to hide that you have something special about you. The staff makes you feel great about yourself. Everyone is friendly and you make friends quickly that may have the same disease as you or something different. The activities are the best… basketball, crafts and so on. You can’t go wrong. It’s my first year and I loved it a lot.”

 

KAT-FISH Camp
(Kids’ and Teens’ Families Investing Support and Hope)

Stanwood, WA
July 27-29, 2012
73 families attended; total of 360 people (including volunteers & staff), Twenty-one families were new to the program.

What was new this year?
Massage Envy provided free massages to parents/caregivers, volunteers, & staff (a good reminder for parents/caregivers to take care of themselves while they’re caring for a child or teen with arthritis). Also, the teen groups used creative lesson plans to teach the younger kids about living with arthritis…game show style was awesome!

What did campers learn?
Kids and teens learned tips on how to advocate for themselves in a health care setting during a conversation with Dr. Helen Emery. They also learned how to make shrinky dinks and Arthritis Awareness bracelets.

What were the most popular activities?
Teen Lounge! The teens loved decorating group flags, playing Apples to Apples and staying up later than all the younger kids!

What was the most played song at camp?
The Macarena played while kids joined Rudolph on stage to dance during the Talent Show.

The best song was written and performed by Aileen Barajas to the tune of Green Day’s “Time of Your Life”. Here are the lyrics she wrote:

Nobody can express the stress that it brings.
Or the pain that can sometimes even sting.
Arthritis hurts and that's why we're all here.
To raise awareness and to help find a cure.
 It's something irreversible that's why we need to fight.
So that we can move on with our lives.
So take your medicine so you can feel all good.
 Even if you don't like them you know you should.
I'm sure we're all agree this camp is the best.
And that arthritis is an unwelcome guest.
It's something irreversible that's why we need to fight.
So that we can move on with our lives.

-Aileen Barajas, age 16, polyarticular JIA
KAT-FISH Camp 2012 performance


What’s a memorable quote from camp?
“KAT-FISH Camp was so beneficial for our whole family. We came home stronger and developed a renewed confidence that we would be able to meet the challenges that lie before us with CHILD’s illness.

When we got home after the camp it was time for our child’s shot. For the first time, she was able to concretely understand the direct relationship between her medication and her health. This time she didn’t fight the shot. She didn’t complain. And she didn’t feel sorry for herself. With courage she got the shot ready for us to give to her and she was more open to discussion about ideas that might make the process less painful. She now has an understanding and acceptance that it is the medication that is allowing her to have the quality of life that she enjoys.

Most families without a child dealing with these same issues would not understand the significance of this shift in thought for our daughter. We are so happy to be involved with a group that does. Thank you so much for the opportunity to become involved with the Arthritis Foundation. You’ve made a difference in our lives.”

 

And there’s one more camp on the way!

Camp Limberlimbs Montana

Camp Limberlimbs Montana will take place September 21-23, 2012 at Camp Mak-A-Dream in Gold Creek, Montana. Camp Limberlimbs is designed for kids with arthritis ages 7-18. Camp Limberlimbs also has a day-long program from kids with ages 6 and younger, as well as a parent networking session.

 

 Find out more by downloading the Camp Limberlimbs registration packet

 

 


 

 

 

Healing Hands for Aching Joints

Pain relief, relaxation and stress reduction are just a few of the benefits two local women with arthritis have found from the therapeutic touch of massage therapy.


“I always thought of massage as a treat, not a treatment,” says Kelli Schandel (pictured right), who has been affected by rheumatoid arthritis for the past 13 years. “But once I started regularly scheduling massage appointments I realized the long-lasting benefits for my arthritis.”

With consumers visiting massage therapists at least 140 million times a year, more Americans are turning to therapeutic massage to relieve the symptoms of diseases such as arthritis and fibromyalgia.

Diane Elrod is affected by rheumatoid arthritis in her hands, feet and neck. Massage therapy was first suggested to her by her rheumatologist as a way to alleviate her joint pain. “I always hurt going in to my massage appointment, but feel good coming out.”

Massage therapy can play an important role in alleviating the pain and swelling caused by arthritis, improving flexibility and circulation and reducing stress and anxiety. Massage treatments target muscle pain and trigger points to help alleviate muscle, bone and joint aches and to help manage stress.

Outside of the physical benefits, both women have seen marked mental benefits as well.

“Arthritis needs to be dealt with both internally and externally,” Kelli says. “Massage clears my mind and makes me feel better overall.”

Diane (pictured left) agrees, “I instantly feel relaxed. My appointments give me an hour to be quiet and put away the cares of the world. I always feel good that I’m doing something healthy for myself.”

Both Diane and Kelli recommend regularly scheduled appointments to help the benefits of massage treatments endure. Kelli schedules massage appointments once a month on average. Diane schedules her appointments every six weeks.

Diane says, “I schedule appointments before or after plane trips, because long flights are always very hard on my body.” Kelli adds, “I like to have appointments on Sunday evenings. It helps to energize me for the work week ahead.”

Finding the right massage therapist and communicating well with them, is an important part of the process. “A good massage therapist will know how the human body works and how arthritis affects the body. They should be a good listener and have a good physical ability to work with the muscles most affected,” Diane says.

Kelli agrees, “They should be able to be flexible and tailor the massage experience so you’re not getting the typical basic massage. You should have an open line of communication with your massage therapist the entire time about your needs, what might hurt and why you are there.” She adds, “Once you find the right massage therapist, try to keep going back to that person so you have consistency.”

For those with arthritis that have hesitations about trying massage for the first time, Diane has this advice, “These are highly trained professionals that will respect your needs and privacy. Massage therapists go into that profession for a reason – they want to be healers and helpers. Start off with something small, maybe just a half-hour massage of your neck only to see how you feel.”

Kelli adds, “I’d recommend for those considering massage for the first-time to keep an open mind. Give it a try and see how you feel afterwards. It doesn’t have to hurt – the right massage will be tailored to be just right for you. The costs of regular massage appointments can be another barrier. Some insurance companies may partially cover massage for those with arthritis.”

An upcoming event will allow for those with arthritis to try out massage therapy while benefiting the Arthritis Foundation at the same time. The Arthritis Foundation and Massage Envy have joined forces to host Healing Hands for Arthritis, a one-day national event to build awareness and raise funds to fight arthritis. On September 19, 2012, Massage Envy will donate $10 from every one-hour massage or facial to the Arthritis Foundation. Last year, this one-day, nationwide event raised nearly $500,000 for the Arthritis Foundation. Massage Envy has nearly 800 locations in 45 states and focuses on being affordable, convenient and professional.

To find out more about massage and arthritis, your local Massage Envy clinics and schedule an appointment, go to:
http://www.arthritis.org/healing-hands-for-arthritis.php

 

 

 


 

 

 

For All Those That Care

Behind every person facing arthritis, there is likely a caregiver standing behind them providing support.

Whether the caregiver is a spouse, parent, child, sibling, friend or other relative, many people affected by arthritis benefit from the support system a caregiver can provide.

According to the National Alliance for Caregiving, roughly 66 million unpaid caregivers, such as family members, form the backbone of the United States chronic and long-term care system. These hard working family members provide care to injured veterans, aging adults, children with special needs, and individuals with chronic medical needs, such as those with arthritis. The needs of people facing arthritis often take precedence in the household.

Charity Lawson’s daughter, Isabel, was diagnosed with Polyarticular Juvenile Idiopathic Arthritis at age 11. Now 13, Isabel (pictured left with mom) has regular pain and inflammation in her ankles, toes, feet, legs, hips, hands, fingers and jaw.  Charity says, “It was like drinking from a fire hose for the first several months – the treatment plan was changing so rapidly.”

Gene Overfelt’s wife, Jean, was diagnosed with osteoarthritis at age 72. Now 90, she has stiffness, pain and degradation in her back, knees and hips. Over the years she has had joint replacement surgeries on her knee and both her left and right hips. “A year after her first hip replacement, Jean fell and fractured her pelvis,” Gene says. “This led to her having lesser confidence in walking and balance and she was much more cautious.”

Providing medical care at home, going to medical appointments, assisting with medications and speaking out on behalf of the loved one are some of the regular activities of a caregiver.

Gene says, “I initiate all doctor’s appointments and she follows through. I always go with her to the doctor’s office and if she doesn’t bring something up that she’s been going through, I make sure to bring it up.”

“I advocate a lot with the insurance company to make sure Isabel’s medications are covered,” Charity states, “We have a high deductible and I carefully monitor our out-of-pocket maximum.”

The challenges of caregiving for a person with arthritis are as wide-ranging as the symptoms of the disease. “It’s always been a challenge for me to try to put myself in Jean’s place and try to understand exactly what she is going through.” Gene says. “For example, I’ll think to myself ‘Why is she still sleeping at 10:00 a.m.?’ and then have to make myself realize it’s because she didn’t go to sleep until 4:00 a.m. because she was in pain.”

“Because of my personality, I don’t have much patience. It’s a real struggle for me,” Gene continues. “My wife reminds me every once in a while that I’m not very patient, and she’s right.”

Charity says, “Watching my daughter in pain is hard. I want to take it all away from her, and I can’t. Dealing with the surprise of others that kids get arthritis is certainly a challenge as a caregiver as well. Explaining arthritis, its types and what it means, and telling our story over and over again is difficult.”

“It’s hard to take time-off unexpectedly from work when she flares and has doctor’s appointments,” Charity adds. “With all the time commitments related to Isabel’s arthritis, I always need to make sure I’m not resenting the person instead of the disease.”

Both Charity and Gene feel there are certain traits that are critical for a caregiver to have. “You have to have a lot of love for the person you are caring for,” says Gene (pictured right with Jean). “This allows you to be more tolerant.”

Charity adds, “Organization is key. I have a binder and work hard to keep all of the information consolidated. You also have to be able to think on your feet and process things quickly. With a disease flare, you may need to make a decision right away about a new medication or treatment and you need to be able to process the pros and cons.”

Investing in your own needs as a caregiver is vital as well. “I find support from other moms of children with arthritis. We meet monthly, compare stories and can speak openly without being judged,” Charity says. “Also find time to recharge. Plan a date night with your spouse, with yourself or a girls’/guys’ night out.”

Gene comments, “Take advantage of the resources that are out there to reduce the burden on you. After Jean’s last surgery, we contracted with a home healthcare support company that helped with home medical and personal care, therapy and even housework.”

Gene and Charity have other advice for caregivers to consider. “Isabel sometimes feels like she has to hold information back from me to protect me from having to deal with what she knows will be frustrating and hard for me,” Charity says. “But it’s important that we have open communications so I know everything that she is facing.”

Gene ends with, “Don’t forget that besides caregiving, you have to show your love… not just in what you do, but in normal ways like a hug and a kiss and saying it out loud.”


More Information
Caregivers can connect with one another through the Arthritis Foundation. Educational forums held across the Great West Region are designed to provide information for people who have arthritis and are often attended by the people who care for them as well.  Contact your local office to find the programs closest to you.

In addition, the Arthritis Foundation offers communications guides that help those with arthritis, and their loved ones, better communicate about the issues they are facing. To find out about more resources like these, go to www.arthritis.org.

 

 

 


 

 

Advance Arthritis Research by Enrolling in the Arthritis Internet Registry

 

Do you, or does someone you know have rheumatoid arthritis, osteoarthritis, or any other rheumatic disease? If so, scientists need your help!  Enroll in the Arthritis Internet Registry (AIR) and lend a hand in helping scientist find more effective treatments and maybe even a cure for arthritis.

All you need to do is fill out a few online questionnaires which are designed to help scientist learn about your experience with arthritis, how it affects your daily activities, the treatments you use, and all medical events that may happen to you, even if not apparently related to your arthritis. There is no charge or obligation for participating.

AIR was developed by the Arthritis Foundation, in conjunction with the National Data Bank for Rheumatic Diseases and Quest Diagnostics.


Enroll in the Arthritis Internet Registry by clicking here.


You can find more information about AIR by reading these articles:
The Arthritis Internet Registry Goes Live
Arthritis Registry Compiles Patient Experiences

 

 

 


 

 

Why I Volunteer…


When Kim Gent’s son Max was diagnosed with juvenile arthritis, she had no idea of the many new things it would introduce into their lives, both challenging and rewarding. She gave up practicing law and faced many financial woes after Max’s diagnosis. Now, as an arthritis advocate and ambassador, Kim (pictured below with her son, Max) tells legislators those same stories to educate them about the importance and impact of arthritis.

Name: Kim Gent

Location: Longmont, Colorado

Connection to arthritis: My son Max was diagnosed with Still’s Disease (a form of juvenile arthritis) at age 6. He’s now 15 years old.

What are some of Max’s symptoms?
When Max’s disease is active, it can affect any of his joints, and we would never know where and when it would hit. Whether it was his jaw, hip, neck, or feet – it is always unpredictable. Once Max was at the movies and his neck was suddenly affected. The pain was so bad that he couldn’t hold his head up and had to leave the movies – it can be that severe and fast. The hardest times were the nights, though. After I’d put Max to bed I would check on him. He’d be crying in his sleep because of the pain and sweating with a high fever. As a Mom, that was always so hard to watch.

What have been the ups and downs since Max’s diagnosis?   
Besides all of Max’s pain, the disease has affected our family in innumerable ways.

I am a lawyer and used to represent children and divorce cases. Once Max was diagnosed with Still’s Disease, that all changed. I realized that I couldn’t practice law and take care of my son at the same time. Max was my priority. I stopped practicing law to take care of him. I stopped practicing for five to six years to help Max through that period. Once his health started improving I went back into practice. Now I represent disabled people. Through my work I am able to use the experiences I had with Max to help others going through similar challenges.

Max’s diagnosis caused a lot of financial stress. Once I stopped practicing law it became very difficult to afford the high costs of his medications and care. One of Max’s medications cost $1,500 a month out of pocket. It was like having an additional mortgage payment. Also, Max was hospitalized twice. When I couldn’t pay the hospital bills, our family had to claim bankruptcy.

As a mother, it was incredibly painful to know that there were other medications out there that would ease my child’s pain, but that I couldn’t afford it.

How did you first get connected to the Arthritis Foundation?   
Max’s rheumatologist, Dr. Roger Hollister, recommended that we contact the Arthritis Foundation and attend the local juvenile arthritis camp program, Camp Limberlimbs.

What were some of the ways the Arthritis Foundation supported and helped you?

Max first started going to camp at eight years old. I was so appreciative of the scholarship that the Arthritis Foundation was able to provide us so Max could attend camp. At times I was reluctant to send Max to camp because of his health, but I always knew he would be in good hands.

Max still goes to camp every year; it’s one of his favorite things. He was a junior counselor this year and wishes the camp could be even longer!

How have you been involved with the Arthritis Foundation as a volunteer over the years?
Max has fortunately been in remission since age 12. This has allowed me to get more involved with the Arthritis Foundation.

In 2011, I went to the Arthritis Foundation Advocacy Summit in Washington D.C. After this event, I decided to become more active. It was difficult, but also rewarding to be able to tell Max’s story to legislators. After that I became an Arthritis Ambassador and attended the Advocacy Summit again in 2012. I’ve also participated in local advocacy in Colorado.

What makes a good volunteer?

A good volunteer is someone who is dedicated and passionate about the issue. Anyone can volunteer so long as they have the desire and an understanding of arthritis and its impact.

I think that people who have direct experience with arthritis are going to be the most positive advocates. I learned at the Advocacy Summit that telling the story of how arthritis impacted my family’s life gives the message much more punch and potency.

What are some of your favorite Arthritis Foundation volunteer experiences?
I’ve really enjoyed interacting with others who have had similar experiences. Also, I’ve enjoyed going to Washington D.C. for the Advocacy Summit and being able to tell Max’s story and see the impact of it. I’ve loved interacting the Arthritis Foundation staff and volunteers.

Was there ever another Arthritis Foundation volunteer that impacted your life?

Anita Fricklas, a fellow Denver volunteer and advocate, has really made an impact on me. I see what a strong advocate she is despite dealing with her own lupus and arthritis. She also brings her grandson to the Advocacy Summit to share the opportunity with him and so that he can learn how to advocate as well. That’s very impressive to me.

For those readers who may have hesitations about volunteering for the first time, what would you say to encourage them to get involved?
Start small. I first got involved with the Jingle Bell Run/Walk and supported the event as best as I could. Do what you can do and don’t feel bad about not being able to volunteer more. The Arthritis Foundation can find a way for anyone to get involved, no matter how much or how little time they may have.

If you or someone you know is affected by arthritis, that story will make you an effective advocate. It may be hard to reflect back on the difficult times to tell stories about what your family went through, but it is important to do so to help other families going through hard times and to draw awareness to the devastating impact that arthritis can have.


Find out more...

The Arthritis Foundation’s Ambassador program trains volunteers, like Kim, on crucial ways to take action and be liaisons between the Arthritis Foundation and local Congressional Districts. To find out more, go to:
http://www.arthritis.org/arthritis-ambassadors.php

 

 

 


 

 

Get Involved

Jingle Bell Run/Walk – Move your feet to a jingling beat this winter at the Arthritis Foundation’s signature holiday-themed 5K run/walk events. The energy and enthusiasm of these fun-filled, family-friendly events will be sure to make your spirits bright. It’s a holiday tradition you won’t want to miss!  


The Amgen People’s Coast Classic
– Ride for a better tomorrow for those with arthritis at the Arthritis Foundation’s dynamic cycling event down the Oregon Coast in September. Choose from two, four or six day options or show your support for one of our many incredible, dedicated riders.

Bone Bash – These SPOOKtacular events in Seattle and Denver are Halloween-themed parties to support the Arthritis Foundation. Dress up, have fun and make a difference – all at the same time!

 
Local Signature Events – Visit your local office Events page to find out about other unique events supporting the Arthritis Foundation. There is so much to choose from including wine tastings, research receptions and Commitment to a Cure events.

Santa Breakfasts - Families with children of all ages gather for these festive events that includes a delicious holiday breakfast and the arrival of Santa Claus. While Santa spends the morning paying personal visits to each group of children, the crowd enjoys holiday-themed entertainment including strolling carolers, clowns, magicians, and ballet dancers performing the Nutcracker Suite. Proceeds benefit the Arthritis Foundation. Contact Beth Zeitlin for more information at bzeitlin@arthritis.org or 206.547.2707 x116.

Donate – Directly impact our mission by contributing today. Your dollars change lives as they fund things like the startup of a new Arthritis Foundation Exercise Program, a scholarship for a child with arthritis to attend camp, a researcher evaluating the roots of arthritis, a community presentation for ways to manage pain and much, much more.

Volunteer – The Arthritis Foundation’s strength stems from its many dedicated volunteers! Find ways you can engage with our mission through local events, programs, advocacy, offices and planning committees. There are countless ways you can make a difference!

 

 


 

 

Foundation Facts

 

  • Over 1 million joint replacement surgeries are performed each year in the United States. It is predicted that by 2030, over 570,000 total hip replacements and nearly 3.5 million total knee replacements will be performed annually in the U.S.

  • The Arthritis Foundation, Great West Region has trained over 191 volunteer program instructors thus far in 2012 (such as those trained at the recent Arthritis Foundation Exercise Program training in Colorado, pictured right). These program instructors will deliver vital Aquatics, Exercise, Tai Chi and Walk with Ease programs across the Region for people affected by arthritis.

  • The Arthritis Foundation, Great West Region’s eight states encompass 22 million people and 36% of the total U.S. land mass. That includes four million adults with arthritis and 21,000 children with juvenile arthritis.

 

 


 

 

Get Connected

Find your local Arthritis Foundation office to get connected to programs, events and volunteer opportunities.

Feedback or ideas for AFeatures future content? E-mail wbalmer@arthritis.org

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