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.
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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.

It’s​ ​beginning​ ​to​ ​look​ ​an​ ​awful lot like the holidays!​ ​Everywhere​ ​I​ ​go​ ​I​ ​see ​festive decor and signs for holiday sales.​ ​I ​guess​ ​I​ ​shouldn’t​ ​be​ ​surprised​ ​to hear​ ​”Jingle​ ​Bells” ​and​ ​”White​ ​Christmas” ​on​ ​the​ ​radio​ ​in November.​

​The​ ​hustle​ ​and​ ​bustle​ ​of​ ​the season​​ ​often bring​s​ ​long​ ​lines,​ ​high-calorie​ ​meals, ​delicious desserts,​ ​and, most​ ​importantly,​​ ​the exchanging of gifts.​ ​​I​ ​love​ ​the​ ​tradition​ ​of​ ​gift-giving​ ​and​ ​the​ ​smiles​ ​it​ ​brings​ ​to​ ​the​ ​faces​ ​of​ my close friends and loved ones.​ ​Seeing the​ ​excitement​ ​that​ ​glows​ ​on​ ​my niece’s​ ​face​ ​as she​ ​tears​ ​through​​ sparkling ​​paper​ ​and​ ​ribbons​ ​​is​ ​priceless.​ ​
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However, what​’s​ ​hard​ ​for​ ​me​​ ​is​ ​the​ ​cost​ ​of​ ​those​ ​lovely​ ​gifts. I always wonder how I will survive the holidays and afford presents on my income.

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.
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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.

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.
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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.

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.

Loving relationships have unique challenges when scleroderma is in the mix
by Amy Baker

A person meets their person. If they are lucky, they fall in love. They may or may not get married. Either way, they lovingly pledge for better or for worse, in sickness and in health.
Too often, the vows we speak to one another are taken for granted. We believe things will always be good, fair, and happy in a relationship. We all have our fairytale version of how a relationship should be.

Fatigue is a common issue for people living with scleroderma. It’s one of the top three symptoms that bothers people living with scleroderma.

What is fatigue? People describe fatigue as feeling tired, mentally exhausted, or physically overwhelmed day after day, no matter how much sleep they’ve had or what they’ve been doing, even if it’s just everyday tasks.

The effects of fatigue can have a significant impact on your pain and can diminish your quality of life.