As part of our vetting process for Arthritis by the Numbers – a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.
Meet Karen Lomas, 65, who works full-time as a nurse. Following, in her own words, is Karen’s story about living with psoriatic arthritis (PsA), which she was diagnosed with several years ago, and how the statistics she reviewed in Arthritis by the Numbers relate to her personally.
Question: What do the statistics you reviewed mean to you and adjustments you’ve had to make?
Karen: I have been a member of the Arthritis Foundation since reading Arthritis Today magazine in my rheumatologist’s office years ago. I’ve taken part in local Jingle Bell Run and Walk to Cure Arthritis events. I was very surprised at the number of patients who have been diagnosed with, not just PsA, but all forms of arthritis. I expected the number of people with osteoarthritis to be high, but I had no idea the numbers were so high for other forms of arthritis.
Question: What changes has your arthritis made to the way you live your life?
Karen: That depends on a day-by-day basis, on how well the medications are working. On some days I have a hard time watching my grandchildren because my hands hurt. Nursing can be physically demanding. While I work full-time in the surgical department, I don’t work in surgery because I have a hard time hanging IV bags and it’s not easy to get on my hands and knees when needed.
I am getting closer to retirement age and am concerned about Medicare coverage. Because I currently have health care coverage through my employer, I can give myself shots at home once a week. Medicare won’t pay for that, and many places won’t take secondary supplemental insurance cards for this treatment option. So, you must pay out-of-pocket and wait to get reimbursed.
This medicine is not cheap. Medicare will pay for infusions of the drug, but that requires you to come into a clinic up to 8 hours weekly, which would be a real burden. So, I plan to work longer, even though my arthritis makes me feel more fatigued. It’s less of a burden than trying to pay for medication on a fixed income.
Question: What advice would you give to a newly-diagnosed patient or parent/caregiver?
Karen: Take care of yourself and be informed. The more you can educate yourself and understand your disease, the better. Working on diet is a good thing – find out about anti-inflammatory diets. Arthritis Today and the Arthritis Foundation website have a lot of helpful information.
There is a shortage of rheumatologists, especially in rural areas. Be careful, because some well-meaning but ill-informed primary care doctors may prescribe ineffective or bad treatments like steroid shots. Long-term steroid use can be harmful.
Question: What are the questions we can’t answer yet, but you would like researchers to focus on?
Karen: I would like to see researchers develop a pill instead of using shots or infusions, especially for squeamish patients. I would also like to see researchers focus on incorporating more natural homeopathic treatments.
I thank the Arthritis Foundation for the opportunity to be involved. The Foundation allows me to give what I can and to help other patients. I want us to be more visible to others. Maybe focus on more celebrity spokespeople who have different forms of arthritis.