The Many Faces of Arthritis

   A Brave young man 

By Leanne Whyte

Calgary, AB...Kevin is my son and has been challenged with three different illnesses for the past several years. Arthritis by far, has been the most painful, debilitating and frustrating for him and our family. He continues being a young teenager and striving to go to school and totally excelling in school. Kevin helps whomever he can and even continues to play Underwater Hockey, even though when he gets home the fatigue is huge!

Last year he had his colon removed to resolve a severe case of ulcerative colitis and now continues struggling with the pain, stiffness, fatigue and drugs of his arthritis. He mostly has a very happy disposition and is our little joker - - he absolutely amazes me!!

He has had to give up skiing, skating, and generally being mobile - things other kids and people take for granted, are things he currently is not able to manage.

Kevin has joined the SACCHYN group and is now corresponding through ability on-line to support other children who have questions and concerns about drugs, surgery and even braces! He does this as a community volunteer and would always help a person or animal in pain or need. Whenever he hears of someone in the hospital or needing treatment, he always says to say 'hi' from him.

Kevin looks forward to programs for kids/teens that would assist them in keeping limber in the water or yoga programs. As a mother I am so proud of Kevin and truly believe he is an Arthritis Hero!

  Remarkable Woman

Moving on with Arthritis

By The Arthritis Society Creston Community Group

Creston, AB...Stella Lewko and her husband Tom moved to Creston in March of 1989, from Hinton, Alberta to get away from the cold and snowy winters.

Stella was diagnosed with rheumatoid arthritis (RA) in the spring of 1979, two months after a bout of strep throat which triggered the RA. The rheumatologist in Edmonton started her on gold treatment - the side effects were worse then the disease and, after two weeks, this was discontinued. She then started on a six month, twice a week, exercise therapy program. This consisted of hot tub, cold packs, waxing of the hands, and exercise. She went into remission, except for a flare about every two years in her feet, hands, and shoulders. The RA hit her again when they moved to Creston.

In 1991, her rheumatologist had her fitted with splints for her hands, and for supports for her feet. Stella was on entrophen for a number of years, as well as other drugs including naprosyn and feldene. All these drugs had side effects without giving any real help.

In 1997, the rheumatologist sent Stella to the G.F. Strong Rehablitation Centre in Vancouver. She was there for a month learning how to live with RA. She was given a program of early morning exercises, which she still does.

In November of 2000, Stella successfully underwent a right elbow replacement. She is now on methotraxate and glucosomine chrondrite, and is managing to live a reasonably normal life with RA.

Stella first became involved with the Creston Group in 1989 and was group secretary for three years because she wanted to keep on top of all the information available with regard to arthritis.

In 1992 she attended a conference in Banff for both the Alberta and B.C. Arthritis Society. She also has taken an arhthritis self-management program course. Stella enjoyed being a member of the Creston Group, and found it a good place to meet other people with arthritis, and to share tips and information on how to live with the disease.

Although Stella is no longer able to take part in the hobbies she enjoyed so much - bowling, curling, and golf, she does keep herself busy with household activities like knitting, reading, and playing bridge.

Stella and Tom moved to Stony Plain, Alberta in April, 2002 as they felt it was time to move on so that they could be closer to family and a larger medical centre where there is better access to rheumatologists and other health care givers.

We wish Stella and Tom all the best!

Finding the humour in arthritis

By Anna Spadafora

Swallwell, AB…For 68 year-old, Pat Wilson, humour is one of the best ways for her to escape a day of debilitating arthritis.

"You have to have a sense of humour in life and be able to use that daily to overcome your obstacles when dealing with your arthritis," says Pat. "Not a lot of people can look at humour and use it as a way of dealing with their arthritis but for me that is how I cope with the disease."

Although Pat has rheumatoid arthritis, osteoarthritis, and epilepsy, she still manages to keep a positive attitude and outlook in life. How does she do it? By dressing up as ‘Knobby the Clown’ and attending social events to cheer people up coping with arthritis. She also gets the love and support she needs from her husband of 47 years.

"I guess dressing up as ‘Knobby the clown’ for years now has become a part of my life, like my alter ego. It makes me forget about my arthritis, explains Pat. "Last year I attend The Arthritis Society’s Arthritis Conference in Calgary to see if I could put smiles on other people’s faces that are also coping with the disease. It just seems like the right thing to do and it makes me happy."

"And then there is my husband who is always there for me. You could say he is my right hand man."

An ex-school teacher, Pat has learned that you have to respect others in return for them to respect you no matter what your disabilities or limitations are.

"When you have arthritis you have to keep positive and respect others. You have to be yourself and hope for the best."

An everyday HERO!

By Jennifer Keim

When I was thirty years old, the world was my playground. I was teaching high school science, playing in two competitive volleyball leagues, racing mountain bikes and road bikes, participating in-line skating and weight training. Then, suddenly, my left big toe became swollen and painful. As any athlete would do, I iced. After many painful weeks, the swelling subsided, but soon afterwards, my right elbow became hot and painful. I iced. The pain eventually went away. I convinced myself that it was simply over- use. Unfortunately my body and my doctors convinced me otherwise.

Within 6 months, I was unable to open tins with a can opener or button my shirts. Rolling down car windows was unbearable and shifting my standard car and depressing the clutch was equally as difficult. I avoided grocery shopping because carrying the bags was equivalent to stabbing needles in my wrists, fingers, elbows and shoulders. I could no longer chew gum or bite down on hard fruit due to the soreness in my jaw. The pain was like an uncontrollable fire; my body was the fodder and there was no one around to extinguish it.

I was exhausted, exhausted from the relentless pain and from the complete lack of energy. My life as I knew it was over. My body was self-destructing; it had betrayed me. As I cried myself to sleep so many nights, I often pleaded, "Why me?" All I wanted was for the torment to stop.

I was in the prime of my life and it had been violently ripped from me. There was no family history of RA and my immediate family, including myself, didn’t even know what it meant to be diagnosed. All I knew was that I had to stop the swelling in order to stop the damage in my joints. And that wasn’t happening.

I have been using ENBREL for almost two years and do not require any other medications. This new medication has given me a second chance to recapture my once forgotten life. I am thankful every morning that I can jump out of bed, energized and ready to face another day with RA. I am forever grateful to the doctor’s and scientists who have worked so hard to discover this medication and to my health insurance provider for covering the cost of the prescription.

Will I do another adventure race? I don’t know, but at least I have the option!

Lean on Me

By Rebecka Maine

Calgary, AB - "Patrick does not have arthritis. I do though. My name is Rebecka Maine. I have rheumatoid arthritis and fibromyalgia. Patrick is my Arthritis Hero because of the positive impact he has had in my life since fibromyalgia and rheumatoid arthritis became a part in my life."

My own experience and that of others with arthritis has showed me that you learn about who your friends really are. I thought I had many close friends, but it turns out I had only one. That one was Patrick Kowalchuk.

Patrick, or Pat, was my strongest source of support. He was helpful to me in so many ways. Looking back, I wonder how I could possibly have gotten through anything without him. It is hard to see someone you love suffer and Pat was put through that with me and he learned the many new kinds of frustrations that come with the process. Suddenly his life was no longer his own. I took up substantial portions of his time and energy. Together we learned just how much impact arthritis can have on someone. We also learned that many things can be taken away such as productivity, finances, comfort, sleep, optimism, humour, mobility and the ability to just do normal things like getting dressed.

In spite of the fact that Pat himself does not have arthritis, he was greatly affected by it. He came to my house almost every day to do the mundane things I couldn't do, such as housework, laundry and grocery shopping. He provided cat care and became a nurse to me. Pat would help me out of bed, help me bathe, wash my hair, help me dress, fluff pillows, bring ice or heating pad, bring ice cream, I could go on about the other million things he has done for me. He also became my chauffeur and was my cheering section, but most of all; he was a great moral supporter. Pat would listen to me cry, rant and rave, whine and complain with rage, but he held my hand, brought me Kleenex, hugged me, yelled with me and forgave me as the situation warranted. At times he would distract me and try to amuse me. He even told me to "shut up" and take a breath, and focus on something else for a change. All of this was needed and greatly appreciated.

Pat knows as much about what it is like to have arthritis as anyone who does have it. Pat and I have learned together that though arthritis affects everything, it isn't everything. You may lose a lot, but you keep a lot too, and with successful treatment you can recover some of the losses.

Today, I am much healthier so I don't need so much help. Arthritis is still with me everyday but it has company. Pat is still my best friend and is always by my side with both aid and support. I am grateful that I am so much healthier and so able to do things because of Pat. I am also thankful and fully aware of the gift and friendship I have found in Pat.

Man with a Mission  

Lethbridge, AB - Imagine being only 11 years of age and diagnosed with a bone infection.  The chance of an 11-year-old even comprehending the complexity of this condition is unlikely.  Scott Gurr only knew that his body hurt all the time.  He began treatment, only to feel worse.  A year later, after numerous tests, Scott was told that he was misdiagnosed.  In fact, Scott was not suffering with bone infection; he had juvenile arthritis.

Scott began to experience terrible pain in his joints and muscles, and for the next 16 years he dealt with the debilitating disease that cost him his youth.  Scott was given steroids to mask the pain of his swollen joints and his weakening cartilage; but by the time he turned 18 he needed surgery - his first, but certainly not his last.  Over the course of the next nine years Scott had 13 surgeries.

Born and raised in Lethbridge, Scott grew up with his mom, dad, sister and brother but he is the only one affected with arthritis.  "Guess I'm the lucky one," he comments.  Scott relies on the support from his family and friends; he knows what an important role that these people play in his life.  He mentioned that there is no way he could go through this without the support and love from his parents.  One thing that makes Scott so exceptional is his appreciation for the little things in life and the love that he has for the people who are important to him.

Scott is starting to tell his story now for the first time.  At the age of 13 he was asked to talk about his life, his hardships and struggles.  But at that time Scott says, "It is hard enough being 13, I'd never met anyone with juvenile arthritis before, and I wasn't about to become the poster boy."  He knows now that most people don't know that kids can get arthritis, and that's why he wants more money put towards research. 

Because Scott was affected with this disease at the age of 11, he can still remember a life without it.  He said, "I was on the All Star Team in baseball.  It hurts to remember all the stuff I can't do, it really makes you think about where I could be or where I would have been."  The whole thing is very difficult, Scott says, "I can't remember the last time I sat down on the ground, or crossed my legs."  These are simple things that most people take for granted.

Scott had dreams too. Upon completing high school, which he did primarily through home schooling, he was going to attend University and do the Fishing and Wildlife Program.  Unfortunately, his application was denied because the program directors felt that his disability would leave Scott unable to complete the physical component to the course.  So that was that, another dream taken away.  But Scott still didn't let that bother him.  Scott says, "I go day to day, I don't look ahead to the future. I take advantage of my good days now."

Scott has a future of countless surgeries to look forward too.  Every surgery that he has had done so far, both knees replaced, both hips replaced, one shoulder replace, both ankles fused, will eventually have to be replaced again because the metal/ceramic that acts as his joint will wear away.  Presently, Scott is getting Remicade injections every two months.  It is a four-hour process every time, but Scott notes that you feel better almost immediately.  It's too bad the disease is only slowed down and not stopped completely.

Scott says, "I try and live life to the fullest even on days when I am sore."  His advice is, "Keep your spirits up, and don't look back."

Woman with a Vision

Calgary, AB - Heroes are individuals who inspire others through their everyday actions and who have prevailed against all odds to live a life full of accomplishments and success. A hero acts as a role model for others facing struggles and educates and supports individuals through their tough times.

Based on these criteria, it is fair to call Gail J. Dahl a true hero. Despite living with the chronic pain of Rheumatoid Arthritis and Ankylosing Spondylitis for twenty-six years she has persevered in her own life, as well as aided and inspired others in her community.

Gail is a role model for many people with arthritis in her community. She owns her own communications business and dedicates herself to helping people like herself earn part-time income to support their health needs. She holds the position of Executive Director and Founder of the Canadian Childbirth Association in the community. She also counsels pregnant women with arthritis, offering advice and support on how to maintain a healthy pregnancy and childbirth.

Even though she has lived with the chronic pain of arthritis since the age of eighteen, Gail has still managed to become a best selling author, publisher and mother. She has achieved much success, including being nominated for the 2000 YWCA Women of Distinction Award and the 2001 Women of Vision Award, as well as being entered in the 2002 Canadian Women's Journal, "Her Story". By envisioning her goals and persevering until she succeeds, Gail Dahl definitely represents a woman with a vision, showing people with arthritia, and others - what it really means to be a hero.

Awakenings

Calgary, AB - Thirty-six-year-old year old Karen Robinson has dealt with the pain and immobility of rheumatoid arthritis each day since she was three years old. She fought with her disease until she had an experience that changed her life forever.

She explains that one day she was in her doctor's office to sign papers to receive foot surgery on both of her feet, one of 40 operations she has had in her life. This brought mounds of tears to her eyes. She thought to herself, How could this be happening to me? What am I supposed to do without my feet? Why is this always happening to me?

As she sat on the bench outside her doctor's office thinking about the pain she was in, a man suddenly came out of nowhere, rolling out on his chest on what seemed to be a board with wheels. He looked up at her and said "Are you okay? Why are you crying? It is such a beautiful day!"

Karen paused in surprise, and all that seemed to be scaring her stopped as she looked at this man who was amputated from the groin down. A man with such joy in his face who had come to her to ask if she was okay.

She felt a complete awakening, like God was sending her a message. From that moment on Karen knew she had to change her perspective on life. She now knew she had to stop fighting her disease and work with it because life is too short.

Karen stays on top of things by keeping herself busy, and says that her family and friends have always been there for her through everything, especially her best friend Loriee Crossfield, and her family Physician, Dr. Audrey Achtymichuk.

" Dr. Achtymichuk is amazing. She is always on call for me. She even comes to my house when I cannot drive, or if I need surgery she comes to visit me at the hospital," explains Karen.

Karen is a Hero because of her courage and will to live life to the fullest even if she is in a great deal of pain. She overcame the stage in which she kept fighting her disease, to working with it and taking it day by day. This makes her a positive role model for people who struggle to deal with their disease.

"When something changes in your life, you as a person - as a human - change, too. You just have to deal with it - not fight it. Enjoy life because it is too short and remember: There is always someone who is worse off than you are," says Karen.

Pharmacist, Dad, Arthritis Hero

Red Deer, AB - "There are many kinds of heroes in our world," says Patti Bildfell. "But there is a type of hero that more times than not, goes unnoticed. The person I am referring to is my husband, Darren Bildfell."

Darren gets out of bed, even though every joint in his body aches, goes to work and stands on his feet all day filling prescriptions. Being a pharmacist is not easy, but it is Darren's job and he enjoys it. He is very empathetic to customers who have arthritis too, and tolerates fellow coworkers, superiors, children's coaches and group leaders lack of understanding and empathy for his daily pain and physical limitations.

"It takes a special person to handle the judgmental looks and scathing remarks from people who don't comprehend what it is like to live with arthritis, " says Patti.

For more than 20 years now, Darren has had rheumatoid arthritis. Along with the pain he endures daily, there are definite good things in his life, like his wife and his three boys.

"A fathers love is not limited to his ability to play sports and or go on camps with his sons. He teaches, encourages, and supports his son's activities, whenever possible. He even supports me through college so that I can have a second career opportunity, since Darren is the main financial earner in our family of five," explains Patti.

Darren always keeps himself up-to-date on arthritis research and passes the information along to his customers. He has also spoken at a conference for pharmacy technicians about arthritis and the medications used.

"In spite of all the pain, my husband has endured, he always remains emotionally and spiritually stable for all of us. Darren will always be our Hero and we love him very much," says Patti.

Emotions a Factor at Belgium Marathon

Sept. 03 - Edmonton, AB - Very few people choose to run a marathon. There are challenges on many levels - proper training requires determination and fortitude - a mental strength that far outweighs the physical demands. And for Robert Falkingham and the other JIM runners signed up for the Belgium marathon, adding an emotional factor to the mix makes it that much harder. For Robert, the symbolism of running through Flander's Fields is very close to heart. He is a sergeant in the Canadian military, and the significance of the location is not lost to him.    

"It is a little overwhelming," says Robert. "Flander's is hallowed ground. Many Canadian men shed their blood on that soil - it is going to be difficult not to get too emotional."

In fact, the location of the Belgium marathon was a determining factor in Robert's decision to join the JIM team. This is his first marathon, and Robert admits that he wasn't a regular runner before starting his training.

"I had completed a couple of half-marathons, but running wasn't something I had a lot of enthusiasm for." he says. "But when a friend passed along the information about the Marathon of Peace taking runners and walkers through the battlefields in Belgium, and I saw that the Canadian Legion was teamed up with the Arthritis Society, I felt it was a perfect match."

Robert has been extremely successful in his fundraising. He recently hosted a bachelor auction, and was pleased to find that when he put himself up on the block, the bidders were willing to pay premium dollars for his cause. At the end of the auction, Robert was the highest priced bachelor, with one woman paying $1,000 to spend an evening with him.

"I was really impressed with the bids overall," says Robert. "The ladies were very motivated to help the Arthritis Society." And Robert found that when he was promoting the auction and talking about his fundraising, he heard many stories about arthritis and was taken aback by the number of people it effects. "There are few people untouched by arthritis. It has really opened my eyes."

Robert has already achieved his fundraising goal, but plans to continue raising money for the Arthritis Society. He is currently selling tickets for a draw to win a signed Oiler's jersey. And while his initial fundraising goal has been reached, he has a few more challenges to conquer. Robert recently developed pneumonia, and is currently recuperating so he can get back on the paths and continue his training.

Despite his health and the challenges of the upcoming intense training, does Robert have any doubts whether or not he'll complete the marathon? Certainly not. "Once my feet are on the ground in Flanders, I could not allow myself to do anything other than run that marathon. I will honor all the veterans - I feel like there will be a lot of eyes on me, and I won't let them down."

Mother/Daughter Team Head to Belgium

Sept. 03 - Calgary, AB- Carroll and Pamela Clarke, a mother daughter duo training for Belgium, have links to both the Calgary and Edmonton JIM teams. These two ladies first became involved with The Arthritis Society through The Jingle Bell run in Calgary, three years ago. Now they are putting themselves to the test and are training to complete The Joints in Motion Marathon in Belgium.

Pamela seems unstoppable when it comes to attaining her goals. She has just finished her Degree in Neurosciences from the University of Alberta, she has earned her pilot's license and she is working towards getting her EMT. And now with the opportunity to run a marathon in Belgium, where many Canadians fought, her incentive is that much more.

Pam is excited to run through Flanders Fields and show her respect for the many Canadians that lost their lives or were injured on the battlefields. Her great uncle Alex fought in Belgium and Holland during the Second World War, and she and her Mom expect to feel many emotions as they run the 42 km historical journey.

Carroll has her own reasons for choosing Belgium. She has never participated in a marathon, but she says, she has always wanted to. She has ran a half-marathon before, and since the beginning of her training she can start to see the fitness results and is excited to "get up to that level again, and then exceed it."

Arthritis is prevalent on both sides of Carroll's family; "I'm running for the past, present and future generations in my family," so that they can live in a world without arthritis.

Running provides a very good feeling. Carroll says, "You get used to doing it and I feel like I'm missing something now when I don't go."

These ladies have different personal goals, but when it comes down to it they both agree that their common goal is to finish.