A dash of humor often helps me get the reaction I want from concerned others by Lisa Weber Scleroderma knows how to be a Debbie Downer. I can be enjoying a moment and BAM! Some debilitating pain or body malfunction pops up to ruin it.
I can’t control when I’ll need to hit the pause button on our fun, but I can control how I approach the situation so I don’t become the equivalent of the lights going out at a party. Having become a pro at living with pain and limitations, I’ve learned that if I share why I can’t do something, people understand. But they also show pity — which makes me feel even worse! I discovered that if I use colorful, silly descriptions to share the why behind my limitation, I cushion the negative impact it has on the company I’m with. Explanations require careful thought My husband and kids were so excited to be at the Tampa Bay Lightning hockey game. We walked endlessly around Amalie Arena looking for an elevator to take my broken lungs to the top floor. With the game about to start, I could see their excitement shifting to frustration. My youngest sighed and said, “Can’t we just take the stairs?” I know I should’ve taken a moment to explain how that could backfire, but I have a toxic trait: I think I can overcome any challenge. Without hesitation, I turned toward the stairwell and braced myself mentally for the battle ahead. My husband sounded the alarms and did his best to discourage me. But stubbornness is my other toxic trait. I made it up the first flight of 30 to 40 steps, but it didn’t feel good: burning lungs, pounding heart, shock waves of pain, as well as complete disorientation while my vision spun around and around. It was no surprise that I needed to take a break. Without question, my family huddled around me while I leaned against the wall in full concentration, practicing mind control so I wouldn’t panic. “Are you ready, Mom?” my teenage daughter asked, with anxiety in her voice. Here’s where I could’ve said, “I just need another minute.” But if I know teen girls, I’d probably get a quick eye roll. And if I shared the truth, “I just need a minute or I’m going to pass out,” I’d get those uncomfortable, concerned looks of worry. Sometimes we push ourselves so hard we lose sight of what's important - By Lisa Weber All the bedroom doors were closed and everyone was tucked in under their warm comforters. Except for me. I had taken on the 2013 holiday season like it was another full-time job. Without enough daylight hours to squeeze it all in, I was working the graveyard shift and bleeding myself dry.
For a long time, I evaluated my value based on how much I could accomplish for myself and others. Acts of service, checked boxes on task lists … but there’s a trap to this method of pleasing people. I didn’t want to say no! I accepted every invitation. I committed to every cookie party, holiday light festival, and gift exchange. I didn’t want my kids to miss out, and I certainly didn’t want to let down friends and family. After confronting it in my teens, I'm coming to terms with it at 40 by Amy Gietzen The word “mortality” has ping-ponged around my brain from the moment I was introduced to the word “scleroderma.” I’ve dealt with the physical and emotional burdens of pain, depression, disabilities, and loss for over two decades.
As a teenager, living with scleroderma made me angry. I bottled up all of my rage-induced emotions so I could fight for my life and find adequate medical care. Nothing I went through during those years was straightforward. My life then seemed out of control and forever changed. I had to sift through granules of emotional sand to find balance, and all the while my mortality was a specter in the distance, watching intently. I lived out my turbulent 20s juggling work, school, and scleroderma. Each day one would outweigh the other until eventually, I lost my rhythm. Nursing school was my happy place, and even though I was in constant pain from lifting patients and making hospital beds, I loved every minute of honing my craft. Columnist Amy Gietzen had many sleepless nights after going into heart failure For some scleroderma patients, loss of sleep and fatigue are significant issues. Trying to manage a barrage of symptoms while exhausted is a tiring game of cat and mouse.
Fortunately, until recently, I had only experienced fatigue in small doses. The occasional nap or sleepless night was all that rattled my routine. It wasn’t until I was diagnosed with heart failure in 2020 that I realized that sleep plays an essential role in my disease management. 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. 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. |
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