The edema caused by my kidney disease is with me everywhere I go
I winced as I stepped down onto a stair with my left foot. A swirl of dull, aching pain was joined by the feeling of skin tearing and puffiness. It felt like my ankle…
Walking On Water — Shalana Jordan
Shalana “Shay” Jordan of Columbia, South Carolina, is a photographer, writer, retired educator, and single mom of two boys. She’s been adjusting to her “new normal” of battling atypical hemolytic uremic syndrome, stage 4 kidney disease, lupus, May-Thurner syndrome, and severe anemia. She received these diagnoses in 2020 at 36 years old. She wants to help fellow rare disease patients adjust to and prepare for the new life that’s unfolding for them. Because life doesn’t end at diagnosis.
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When insurance guidelines hold more sway than they should
Warm tears welled up in my eyes, and I could feel my neck and face turning red. Something I’d long hoped for was slipping out of my hands. So I asked the question I…
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