How I benefited from focusing on the positives in life - By Lisa Weber
The gentle sound of wind chimes filled the house. Then the short melody repeated itself. And again. Every time the tune played, I heard my daughter mumble, “Alexa, stop.” She was never an easy child to wake up.
Lying in bed, I listened to her become increasingly angry at her virtual assistant. Over and over she repeated her command until she was full-on screaming at the little black box: “ALEXA, STOP!” But the wind chime music played on, unfazed — because it wasn’t coming from Alexa, but rather the alarm on her phone.
While I had a good chuckle listening to this teenage meltdown, it also reminded me of an important lesson I’ve only recently learned.
Does scleroderma itch? More than you can imagine - By Lisa Weber
When I moved to Florida in 2002, I knew nothing about tropical climates, other than they’re great for beach vacations. While unpacking the moving truck, I sat down in the grass for a quick rest. That was my first mistake.
Within seconds, my upper legs were covered in fire ants. The tiny monsters went straight to work injecting their venom. No matter how fast I swiped them off, they had already left behind burning bites all over the back of my legs and up to my lower back.
Once I was finally rid of them, I made my second mistake: I scratched the burning itchiness that had spread across my skin. That was a quick lesson: The scratching only exacerbated the problem and made it last longer.
Can We Lead a Stress-free Life With Scleroderma? by Amy Gietzen
Chronic stress can lead to many physical and emotional issues, such as anxiety, high blood pressure, stomach ulcers, and heart attacks. For many people with autoimmune diseases, stress causes a ton of complications and exacerbates symptoms.
This is also true for those of us with scleroderma, as stress can result in a Raynaud’s phenomenon flare-up, heart palpitations, anxiety, or stomach issues. Mostly, it makes the painful symptoms we already endure worse, and it might even cause new issues to arise.
Columnist Lisa Weber says she's a better human being because of her diagnosis
She was fumbling through her coupon book, desperately trying to ignore the stares and loud sighs. As the line to the cash register grew, the moaning and groaning intensified.
I gently said, “Take your time. You’re doing great.”
The young woman locked eyes with me, and I could instantly feel the pain in her heart. I choked back tears as she began to smile. Her grin spoke volumes, as if to say thank you for understanding.
Preparation and self-advocacy have made a difference for this columnist -by Amy Gietzen | October 12, 2022
Anyone living with scleroderma knows it is a difficult disease to manage. As patients, we are constantly flustered by a disease that seems to have no boundaries. Symptoms and treatment strategies vary from person to person, and scleroderma has no cure.
Because of this, every scleroderma patient has the unfortunate task of becoming their own self-advocate, which entails learning through lived experiences. Patients must learn how to keep up with treatments, manage symptoms, and cultivate resources, which include people I refer to as “reliables,” or those I trust, along with medical specialists and others in my support network.
When yoga poses get challenging, a columnist keeps looking for improvement - by Lisa Weber | October 7, 2022
My feet were planted firmly on my turquoise yoga mat, and I felt strong as I held the Warrior 1 pose. My front foot was lunging forward as my arms were stretched up high above my head. Soft, spalike instrumentals swirled around me as the instructor’s voice guided me to place my hands on the ground and bring myself to a forward bend. I glanced at the TV to get a visual of these instructions, calling for hands and feet on the floor to make a bridge with my body.
The past gymnast inside me thinks, “This will be easy!”
In my head, I’m still agile and flexible, as I was before scleroderma started its war on my body. Without much thought, I sprang right into that pose. Only I didn’t look like the graceful, bendy yoga instructor. My hands didn’t open fully to support my weight, and my legs wouldn’t stretch straight enough to form the V-shape I was hoping to achieve.
Juvenile SSc diagnosed in boy with type 1 diabetes and telltale hand issues.
by Andrea Lobo, PhD | October 4, 2022
The case of a 14-year-old boy with diabetes provided a starting point for a finding of juvenile systemic sclerosis (SSc): the limited joint mobility evident in the boy’s fingers can be an initial sign of underlying SSc, the report’s researchers suggested.
Although “the coexistence of diabetes with juvenile systemic sclerosis is rarely described … the association between [the two conditions] may be more than a coincidence, and could suggest a relationship between glucose metabolism, fibrosis and microangiopathy [small blood vessel disease],” the scientists, in Italy and Canada, wrote.
For columnist Lisa Weber, corns are a painful side effect of scleroderma
Did you know that gymnastic balance beams are made of aluminum and wrapped with a thin layer of polyethylene foam and leatherlike material? If a stunt is landed incorrectly, it’s like landing on concrete.
When I was a gymnast, I once missed the landing of a front flip and my heel smacked down — straight through to the metal. At that moment, I was certain I’d shattered the bone. But it turns out that the heel is incredibly sturdy, so the bone was only bruised. Painfully sore for days, but fine otherwise.
Because scleroderma has broken down the padding on the soles of my feet, “skin and bones” now means something new. My feet are now structured eerily similar to the balance beam: hard bone wrapped in a thin layer of skin. The padding is almost nonexistent.
Columnist Lisa Weber and her dog Tebow are the perfect match
If a dog could have Raynaud’s phenomenon, my Tebow would be the one to have it. His tiny frame has the thinnest white coat that barely covers him. His pink skin is visible through his fur. And, like me, he’s always seeking out warm spots to cuddle up in.
Sometimes I can’t find him because he’s wedged himself between the pillows on the couch. I get it, though. I always cover myself in blankets and socks when I’m lounging around.
Scleroderma Queensland Support Group