My Story: Living, Healing, and Creating with Chronic Illness

Sandstone Daily began with a need for something real—my story, the reason this space exists. The second half of my life has unfolded under the influence of chronic illness, in ways both quiet and dramatic, and countless others know that journey firsthand. This blog is meant to be a haven where invisible struggles are seen, honored, and shared.

The Early Signs

Thinking back, my body had been sounding alarms as early as 2012, and even during my second pregnancy in 2008. Those first months were tough, marked by constant illness and near-diagnoses like gestational diabetes. Afterward, symptoms crept in, eyes stinging, cheeks swelling on unpredictable sides, deep aches, numbness after exertion, and limbs falling asleep far too often. Doctors dismissed it as stress, but at the time I didn’t understand what stress management truly meant, nor did I know how to listen to my body. Life moved forward, and so did I.

The Flare That Changed Everything

Recovery from a severe H. Pylori infection in 2019 took six months, leaving me frustrated with how poorly my body handled illness and treatments. Then in 2022, everything fell apart. A sudden, full-body rash landed me in urgent care repeatedly before I was finally hospitalized. Steroids helped at first, but the trouble only worsened after stopping them.

Within a week, I experienced a painful transverse myelitis episode, three days of maximum morphine and steroids, but the aftermath was even more frightening: total numbness from the waist down. Bloodwork, an MRI, and a spinal tap finally brought clarity:

• Sjögren’s Syndrome
• Rheumatoid Arthritis (RA)
• Neuromyelitis Optica (NMO), a chronic demyelinating disease much like Multiple Sclerosis

The diagnosis was overwhelming, especially recalling my mother-in-law’s three-decade battle with MS. My body felt depleted, my world smaller, and my future uncertain. I worried my life would never look the same again.

Rebuilding

That year became all about survival both physically and mentally. I began Rituximab and Hydroxychloroquine, shifted to an anti-inflammatory diet, and took up Pilates once mobility allowed. Whether it was the medication, lifestyle changes, or simply time, I gradually regained some strength. However, during the first two years, my abilities, both for myself and for my family, were drastically different than I would ever want them to be. This is both frustrating and terrifying at the same time. I still live with symptoms every day and endured both minor flare ups and another major flare confirmed by MRI. Transitioning to Enspryn has brought me greater stability by significantly reducing relapses, but managing chronic illness still means constant adjustments and navigating mountains of advice- some helpful, some harmful, and some downright ridiculous.

Chronic Illness Is Not Just Mine

Chronic illness is woven through my family’s story. My daughter manages POTS, MCAS, Hypermobility, and ADHD. My mother-in-law spent over thirty years living with MS. Autoimmune disease has become like the background music of my life, and I see more and more people facing similar physical and mental health challenges every day. That’s part of why we’re here, isn’t it? Still reading this blog post, seeking connection. This space exists not only to raise awareness but to foster a sense of genuine community.

Why Sandstone Daily?

Sandstone Daily grew out of the same creative energy as my design brand, Sandstone Drift– my shop featuring a collection of artwork, sweatshirts, and tees created to represent chronic illness and invisible disability authentically. This blog dives deeper- sharing words, experiences, resources, and meaningful dialogues.

Here you’ll find:

• Stories and honest reflections on living with chronic illness
• Spoon Theory discussions and tips for managing limited energy
• Resources to help navigate invisible disabilities
• Community stories and personal submissions, including yours
• Updates from my Sandstone Drift shop.

Why Sandstone?

A sandstone is shaped over time by countless particles, moments, and pressures, each contributing to a singular form that is complex, layered, and, in my eyes, beautiful. Sandstone Daily is the record, the ongoing collection of thoughts and insights. Finding resilience in fragility, celebrating survival, and giving voice to experiences too often ignored and often deemed inconvenient or scary to others.

An Invitation

Whether you are a Spoonie, caregiver, loved one, or just curious about chronic illness, you are truly welcome here. Building community online can fill the gaps left by what’s hard to find locally. Please comment below and send your stories to Daily@Sandstonebydesign.com– The more we share our truths, the more visible our struggles become, and the fuller and more meaningful our experiences feel. And hopefully, this collection of words can transform into data that fuels science, turning personal experience into collective progress and hope.

Take care,
Sandy

Founder of Sandstone Daily