I squint while looking forward, trying to get my eyes to focus. My head is throbbing so badly I can feel a pulse in my eyes. Every beat of my heart thumps pressure into my eyes, ears, and throat. I also feel it in my chest, feet, fingertips, and eardrums.
Walking On Water - a Column by Shalana Jordan
Moving is simultaneously one of the most dreaded and exciting events in life. There’s the thrill of new beginnings, but trials and tribulations can also occur, especially during a long-distance move. Having just settled in a new state, I’m now in the thick of the next complication: finding a new…
The winds picked up, blowing ominous clouds into view. The blocked sun and cool winds made the temperature drop more than 10 degrees. We were hours behind schedule. I’d wanted to be on the road at 2 p.m. because rain was expected at 4. My legs and arms were hurting…
“We don’t believe that lupus is causing your medical emergency because you’re experiencing thrombocytopenia as well.” I blinked weakly at the doctor in front of me, puzzled by the news. I’d been admitted to the intensive care unit (ICU) just hours earlier and told I was dying of kidney failure.
When I opened my eyes, all I could focus on was how much they were burning. They were watering, but that provided no relief because my tears were hot. No matter which position I lay in, I was uncomfortable. My skin was crawling and my mind was racing. My thoughts…
Note: This column was updated March 17, 2025, to correct that the writer uses an antibody therapy. I step out of the shower and face the stranger looking back at me in the mirror. My thin, brittle hair has more gray in it than before, and my scalp is riddled…
Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. The hand on the clock ticked to the next minute. As I looked at the timepiece, my hearing seemed to become hyperfocused. Despite being surrounded by beeping machines, multiple conversations, a fire alarm, and…
Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. “You’ll need someone present during the entire surgery, which can last three to four hours, just in case end-of-life decisions need to be made on your behalf.” I looked up from the information packet…
Note: This column was updated March 17, 2025, to correct that the writer takes an antibody therapy. Grief is like an ocean. It’s cold and shocking when you first get in the water. Then the waves are constantly breaking and hitting you in the shallows, each one signifying sadness and…
As the garage door opens, cold air pours in, creeping into my joints and bending my limbs. I step onto the driveway and am hit with a breeze that freezes me even more. Winter is here, and it will be like this for the next few months. I’ve always loved…
Recent Posts
- My community helps me navigate the ultra-rare reality of living with aHUS
- Dual therapy manages aHUS with high blood pressure: Case report
- Caregivers are the unsung heroes of the rare disease world
- aHUS drug Soliris helps reverse organ failure in young woman in rare case
- A ‘glow-up’ is just the boost I’ve needed in life with rare diseases
- Unexpected gene therapy finding may help treat two rare kidney diseases
- How aHUS treatment led to my first tattoos
- Ultomiris at lower doses just as safe, effective for children with aHUS: Study
- Strange symptoms make me wonder if I’m having neurological complications
- Leaky artificial heart valve triggers rare aHUS in woman, 70: Report