Sometimes, it takes a (small) village to lift a person up, even when they are good at lifting themselves. Kate Boyington, 49, of central Minnesota, manages psoriasis, psoriatric arthritis, and recently was diagnosed with fibromyalgia. This retired nurse, who is now on disability, is buoyed by her husband, Mark, her daughter, Atti, who's 16 and son, Mark, 17. Boyington is determined to keep moving forward with joy in her heart.
Managing psoriasis since she was 9, and diagnosed with psoriatic arthritis at 37, Boyington is a study in perseverance and acceptance. She also has a new coping tool in her toolkit: the National Psoriasis Foundation's Patient Navigation Center, implemented in February 2016.
HealthCentral: Kate, you have a lot going on here. Tell us about your journey to a psoriatic arthritis diagnosis.
Kate: Years ago, I saw the doctor for swollen and painful fingers and knees. I also saw the gynecologist for a polycystic ovary. Doctors would say, "You have inflammation, but your lab work looks good, so you must not have an inflammatory disease. We'll keep an eye on this." Oh, and more than one doctor said I needed a psychiatric evaluation.
Then, at 37 when I was working as a nurse in the heart unit, I suffered a heart attack there, but thankfully, my heart was not permanently damaged. The doctor who admitted me asked me if I'd had any rashes, because he'd seen a study about psoriasis, psoriatic arthritis, and increased risk for heart disease, and he referred me to a rheumatologist.
(Note: A number of studies have since confirmed that relationship, including this 2015 paper in Arthritis Care & Research.)
HealthCentral: What was it like having psoriasis as a child and growing up with that condition?
Kate: My mom said that from the time I was born, I had "red patches" on my skin. At first, doctors said it was eczema — and to keep it clean and dry. One time I got a high fever, my skin got really red, my joints swelled and I had a positive strep culture. I was told it was rheumatic fever or scarlet fever.
I was given penicillin, but if you have psoriasis—which I did but which hadn't been diagnosed yet—and get strep, the use of penicillin for strep can trigger guttate psoriasis, or many small, separate red spots on the skin. I had a full-body outbreak.
I was finally diagnosed with "regular" psoriasis and given a tiny jar of steroid cream and a toothpick to apply it with. I spent two hours nearly every morning putting that cream on. Sometimes I felt sick, hurting all over, and all of that negatively affected my schoolwork.
HealthCentral: How are you managing now with medications and lifestyle behaviors?
Kate: I have run the gamut with every medication except two my doctors said wouldn't help me, and another may have caused a near-fatal infection last summer when my previous metal hip "went bad." Right now I'm on bed rest from hip surgery early in December last year — my hip has dislocated twice since surgery.
Now I just take Plaquenil (hydroxychloroquine sulfate).
Some people swear by gluten-free or raw diets, but I just try to eat healthy, even though it hasn't "cured" anything. Usually, I try to walk every day and play with the farm animals: ponies, poultry, and I raise Angora rabbits. When I get depressed, I talk to my sweet little animals, and I take them to visit people who can't get out, who are in a nursing home, for example.
Credit: Kate Boyington
HealthCentral: How has your family been there in wonderful ways for you?
Kate: Mark is a really encouraging guy, and he'd come to all my appointments early on when we didn't know what was really going on. He'd say, "We'll keep on trying to figure this out, and we'll keep working on it." My children are so good, and they've had to deal with mom being sick. They know the drill — that they have to pitch in and they do.
HealthCentral: Tell us about your positive experience with the Patient Navigation Center.
Kate: I've been working with Natalie Taylor since I shot off this intensely angry email when I was in the intensive care unit with that hip infection last summer. (There's an email function right on the center's home page, or you can call, chat, Skype, or text.) It was a build-up of years of frustration, and she was so sweet and gentle, so kind and understanding about it all.
Natalie said she's had some health issues too, was in an accident and has chronic pain. She helped me with questions I could take to my doctor, since I also had erythrodermic psoriasis. (This severe rash covers the body, and features skin shedding, elevated heart rate, extremes in body temperature and very severe pain and itching.)
She also suggested some treatments —navigators are not doctors, but highly trained — and my doctor actually thanked us for those resources. Within a couple of days, I was feeling better!
One reason I can be so hopeful is because of the resources of the center. I am not at the end of my rope with this. Natalie also advised me about my insurance, referred me to a local palliative pain clinic, and she gave me a list of other doctors I might see.
HealthCentral: How else are you proactive about your conditions?
Kate: I'm in two Facebook groups: Psoriatic Arthritis Sufferers Unite and the Psoriatic Arthritis Support Group. These are great groups of people I can bounce things off of, like, "Has anybody tried this?" or "What do you think?" The message we share: Don't give up. You're not alone.