GRANGEVILLE What started as a nuisance a few months ago became a life-changing diagnosis for Jen Huntley.
Huntley has owned the business Get Nailed! since 2006, and prior to that cleaned rooms at Elk Horn Lodge, so her lifestyle has been that of physical work.
“In May of last year, my legs began to swell,” she said. “That was really unusual for me.”
Huntley has been used to an active lifestyle, which has included motorcycle riding and exercising, so to have a physical ailment slow her up wasn’t something she took lightly.
“I had some blood tests, and my kidney and liver functions were a little off,” she said.
More blood work, an ultrasound and CAT scan during the next few months led her to July when her right wrist began hurting.
“At first, we thought maybe it was tendinitis or a stress fracture because I use my wrists continually with doing people’s nails,” she said.
As the skin on the top of her hand began to tighten, she kept researching her symptoms on the Internet and a local man’s diagnosis kept popping up in the back of her mind.
“10 years earlier, Rod Pilant [former White Bird mayor] had been diagnosed with something called scleroderma,” she said. “That really stuck in my mind because some of his symptoms seemed a lot like mine.”
Huntley is grateful for a local health care provider, Peg Gehring, who kept up and kept pushing for appointments with specialists, even though the diagnosis was not one Huntley was hoping for.
She saw a dermatologist and in 10 days had a positive diagnosis: scleroderma.
“I had done a lot of reading up on it, so I knew it wasn’t good,” she said.
Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclera” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. The disease has been called “progressive systemic sclerosis,” but the use of that term has been discouraged since it has been found that scleroderma is not necessarily progressive. The disease varies from patient-to-patient.
Huntley was placed on methotrexate and her husband Lee was able to give her the shots at home. It was hoped the medicine would help slow the progression of the disease; however, it did not work for Huntley, who seems to have an aggressive form of the disease.
“I felt awful and it affected my appetite – I basically just don’t have an appetite,” she said.
Just last week she started a new treatment – chemotherapy.
“Mostly for me so far, the frustration has been that I cannot do the things I used to do,” she said. “I cannot take care of my family like I used to – cook, clean. I have a difficult time with stairs and I cannot exercise or get out in the outdoors like I used to.”
Huntley said she is happy to have maintained her weight since Christmas and thanks her family and friends who have helped her.
“I have people who bring me food and I eat even when I don’t always feel like it,” she smiled. “And my son and husband have been great.”
The disease has left her exhausted, but she is still working part time.
“I need to,” she said. Although she has insurance, the not-covered portions have not yet started to come in. “I know that won’t be pretty.”
Lee works for Bud’s PowerSports and the couple say his work has been “very supportive.”
“They are flexible if I need certain days off,” Lee said.
Huntley grew up in Nezperce and husband, Lee, grew up in Cottonwood, so they have been surrounded by family and friends, including a daughter who lives in Nezperce.
“I feel fortunate for the people we have in our lives,” Huntley said.
Because she cannot be as active as she once was, she has sought out things to keep her mind and hands as busy as possible. She loves to read, but since page turning is difficult, she now reads on a Kindle. She has also started to work on “diamond by numbers” projects which is like paint-by-numbers using tiny synthetic diamonds and tweezers to make a picture.
Also offering her solace is her Pomeranian, Foxy, who sits on her lap when she’s trying to warm up or has had a difficult day.
“There are many times I just want to know, ‘why? Why is this happening?’” she said. “But I know that bad things happen to people all the time. This was definitely not what I had planned for my life, but I’m trying to make the best of a difficult situation.”