Creepier than a spider, even more insidious than a snake and lurking around more corners than you might imagine is an autoimmune disorder.
The human body is designed to attack intruders such as bacteria, viruses, toxins and cancer cells. These invaders contain antigens, molecules which inspire the immune system to seek and destroy.
An autoimmune disorder occurs when the immune system does not distinguish between healthy tissue and antigens, causing the body to begin destroying healthy tissue.
There are about 80 identified autoimmune disorders. Some examples are type 1 diabetes—the destruction of insulin-producing beta cells; Crohn’s disease—attack of the gastrointestinal tract; multiple sclerosis—affecting the brain and spinal cord; scleroderma—hardening of the skin but can also affect the internal organs; rheumatoid arthritis—affecting the joints.
Rheumatoid arthritis (RA) is at the forefront of my consciousness these days for two reasons: Complications from a lifetime of living with this disorder recently took the life of a special local person named Pennie Erickson, and my young daughter was diagnosed with it shortly after beginning her career as a nurse.
I’ve known Pennie for years and knew that she had arthritis, but I didn’t understand the distinction between osteoarthritis (the degeneration of joints which affects people as they age) and rheumatoid arthritis, until my daughter began exhibiting symptoms.
Pennie, like my daughter, was diagnosed with RA at a young age. Sadly, the younger one is when symptoms appear, the more aggressive and debilitating it tends to be.
So how does one deal with this diagnosis, sure to cause pain and hardship throughout one’s life? How do I deal with it as a parent?
I looked to Pennie for answers, Pennie who was always cheerful and positive and who never complained. Pennie who raised two children and ran a successful business with her husband, Ron, of 47 years, Pennie who did things for herself despite her rounded feet and curled hands.
Pennie lived with pain every day of her life yet she exuded a spirit of hope and good cheer. There was something special about Pennie.
The picture her family chose for her obituary (July 17, North Lake Tahoe Bonanza) embodies that special spirit. It invoked for me the image of a little girl, experiencing the joy of seeing a butterfly for the first time. And I realized, that was Pennie.
My daughter, Melanie, first expressed something was amiss when we went to Phoenix together in January. She’d had a bruised pinky since November, some of her other fingers were sore and swollen, she was excessively fatigued and she couldn’t keep up with me on our daily walks.
As we walked and talked, and she told me of some of her difficulties, dread began to grow. I had recently lost a sister to scleroderma and some of what she was experiencing reminded me of my sister.
The last night we were in Phoenix, Melanie awakened with excruciating pain in her shoulder. Upon returning to Reno, she quickly made an appointment with a doctor, who ordered lab tests and yes, she had an RA factor four times what is considered normal. He referred her to a rheumatologist, who started her on methotrexate, an immune suppressor.
Melanie didn’t feel this doctor was a good fit for her so I asked Pennie for a referral. Her doctor was able to provide one and thankfully, this doctor immediately recognized the severity of Melanie’s symptoms and began the process of getting her on an expensive drug called Humira. She had been on methotrexate for three months but her symptoms were worsening and bone damage was already beginning to occur.
One day after her first dose of Humira, a drug Pennie was never able to try, she felt better. Within two weeks, there was a marked improvement.
A month after that first miracle dose, she told me that she hadn’t realized how deeply the disease was affecting her everyday life until she began to feel normal again. It dawned on her that she had been just going through the motions of getting through each day.
We are grateful for Humira. Although it can cause long-term side-affects, we can’t worry about that now. We just have to experience the joy of seeing our first butterfly, each and every day. And remember Pennie, her bravery and grace as she soldiered on through her pain, each and every day.