Gardening, Wordle, and living with PMR: Meet @nyxygirl

JOHN: What brought you to Mayo Clinic Connect? 

@nyxygirl: Before joining Mayo Clinic Connect, I had downloaded a patient brochure about understanding polymyalgia rheumatica (PMR), which mentioned the benefits of connecting with others in a support group. Surprisingly, such a support group was not available in my own medical network. Mayo Clinic Connect was my first alternative for a reputable and respectable patient online community. I take part in the Polymyalgia Rheumatica (PMR) support group. I just looked back to see that I typed my first message one morning in May 2023 at 3:30 am!

JOHN: What motivates you to take part in the community?

@nyxygirl: Getting and giving feedback to assure myself and others that we are not alone in struggling through the journey initiated by a PMR diagnosis. I certainly appreciate the willingness of members to reply to direct questions, a deeper dive so to speak, to enhance the give and take.

 JOHN: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@nyxygirl: I’m grateful to the participation and the obvious dedication of the PMR volunteer mentor @johnbishop and also the staff moderating team. John was generous with his time in helping me become a better participant and a better prepared patient.

JOHN: What support groups do you participate in?

@nyxygirl: I stick to the Polymyalgia Rheumatica (PMR) Support Group.

JOHN: Tell us about a meaningful moment on Mayo Clinic Connect.

@nyxygirl: Initially, my PMR was managed by my primary care physician (PCP) and I was on a suboptimal dose of prednisone for about a month before an appointment with a rheumatologist. It was during this time that I read a few uncannily similar experiences with pain and stiffness at particular times of day and night. 

At the time, there was a particular discussion about splitting the prescribed dose prednisone to take twice a day instead of the full dose in the morning. Despite concerns about insomnia, my PCP agreed that I could split my 15 mg dose. It helped.

When there was a discussion about keeping a pain journal, which included posts from @walkamok, I attached a screenshot of a spreadsheet I use to track my symptoms. I call it my heat-map as I color code it. It consisted of large blocks of red and Walkamok was so kind to notice that I must not be feeling too great and was probably having a rough time. It made me laugh and I apologized for displaying such an alarming image. I noticed this behavior often on Mayo Clinic Connect; members comment with compassion and concern, and sometimes humor.

JOHN: What surprised you the most about Mayo Clinic Connect?

@nyxygirl: Living on the East Coast, I guess I would say that I wasn’t aware of how far reaching Mayo Clinic is until my PMR diagnosis, especially the patient community on Connect.

JOHN: What energizes you, or how do you find balance in your life?

@nyxygirl: After taking medical leave for two months and reducing my hours at work for the remainder of 2023, I retired from my job in biotech in December 2023. I made a commitment to take swimming lessons in 2024. The classes were a great way to have a schedule in my week upon retiring. I was tapering prednisone very slowly at that point so I was attuned to every physical feeling in my body. Being literally immersed in the pool was relaxing, but also required focus. Watching Olympic swimmers was also a good inspiration!

JOHN: Tell us about your favorite pastime or activity

@nyxygirl: I love gardening! I’ve also played word games since I was a kid, so being a Scrabble player makes it easy to be a Wordle player.

JOHN: Do you have a favorite quote, life motto or personal mantra?

@nyxygirl: “Keep breathing!“ Whether it’s the yoga instructor or nurse or swimming instructor  telling you, it’s good advice.

JOHN: What do you love about where you live or vacation?

@nyxygirl: It’s difficult for me to imagine not being near water, cold water at that! We vacation in Maine in July and live on the Massachusetts North Shore. In August and September, when summer winds down, a day reading at the beach is a great reward after weeks spent in the yard gardening from spring to July.

JOHN: Puppies or kittens?

@nyxygirl: BOTH! My mother fed an abandoned litter of kittens with a baby bottle and formula — quite an inspiration. We had lots of cats and kittens and I still have a pet cat. My username was the nickname for my German shepherd, her name was Nyx. Sad that they don’t stay a puppy or kitten forever.

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