When Fear Becomes Reality: Marilyn’s Story
For Marilyn Palsenbarg, getting diagnosed with rheumatoid arthritis and osteoarthritis at age 36 felt like a death sentence.
That’s because death was the only outcome she knew for someone who had RA and OA. Marilyn had watched her father struggle with the same diseases until eventually he took his own life – or at least, that’s what the family believes happened.
“My dad was put on prednisone and, back then, doctors thought it was a miracle drug,” Marilyn said. “But it destroyed him. His bones crumbled.”
Her father had his right leg amputated and eventually, it became too much for her mother to care for him. He was moved to Evergreen House, a care facility in North Vancouver, where the other residents were much older than him.
“My dad had a very sharp mind and he was put in a place that was not meant for him,” Marilyn said. “He tried to commit suicide, but nurses found him and saved his life.”
Marilyn’s father eventually passed away at the age of 59. Her mother said one of her father’s friends gave him poisonous berries so he could take his own life. But no one really knows for sure.
When Marilyn first received her diagnosis years later, she immediately thought about her father and worried her fate would be similar to his.
“I was very, very depressed,” she said.
But Marilyn’s rheumatologist set her mind at ease. He assured her that treatment methods had changed and put her on a regime of Naproxen and Plaquenil.
“After I started those medications, I could walk again. I felt human again. I remember telling my mother-in-law that I could do the things that I was supposed to be able to do at 36,” she said. “I was so grateful.”
Marilyn describes her life with arthritis as a roller coaster. She notices that the symptoms get worse as she ages. Like many people with RA, she has tried different medications over the years – some worked and some didn’t. She’s even gone on prednisone from time to time – but only for very short periods. Marilyn has developed Sjögren’s – an autoimmune disease characterized by dryness of the mouth and eyes – which is common in people with RA. She has back issues and requires cortisone shots every nine or 10 months and she has a titanium shoulder implant on her right shoulder. Marilyn has also experienced complications like intestinal bleeding as a result of some of her medications.
For Marilyn, new treatment options and the support she receives from her family doctor and rheumatologist help her soldier on.
“When I was first diagnosed, my doctors were the only people who could settle my mind and help me realize that I wouldn’t end up like my father,” she said.
A new life
Marilyn struggles with daily tasks like cooking and cleaning, but feels lucky to have a husband who can help her. She focuses on taking care of herself and living the best life she possibly can. She’s also found great advice in Facebook groups for people with arthritis.
“I get some hints from other people who have RA – it makes me feel like I’m not the only one going through this,” she said.
Marilyn admits that while her friends are sympathetic to her struggles, they can’t really understand what she goes through on a daily basis because they don’t have arthritis.
“It’s not just disjointed fingers and not being able to walk very well. It’s not just what you see. It’s everything that’s going on inside you too.”
Marilyn is now 70 and has been living with arthritis for 34 years. She has seen the evolution of arthritis treatments from her father’s experience and through her own life. She knows that arthritis research is key to improving, and saving, lives.
“I thank the doctors and researchers for continuing on with the fight. If they hadn’t, I would be in the same position as my father and probably not here today.”