From August 2018 through the end of 2019, my life was filled with uncertainty and fear.
For more than a year and a half, I struggled with unexplained medical issues. I saw multiple doctors, received several different diagnoses, and experienced allergic reactions to medications that were supposed to help me. Despite everything I was going through, no one could tell me what was actually wrong.
Eventually, I was diagnosed with scleroderma, a rare autoimmune disease.
At the time, my doctor told me the condition could likely be managed through reducing stress, mild medications, and changes to my diet. My concerns about how serious the disease could become were largely brushed aside. I wanted answers and reassurance, but I left feeling uncertain about what the future might hold.
Then everything changed.
In December 2019, after experiencing serious trouble breathing, I was admitted to the hospital and quickly transferred to the ICU. I was in the middle of a scleroderma renal crisis, a life-threatening complication that can lead to kidney failure.
I spent four weeks in intensive care fighting for my life.
I survived, but the road ahead would not be easy.
On Christmas Day 2019, I was told I would need to begin dialysis. Doctors couldn’t say whether it would be temporary or something I would need for the rest of my life. At the same time, my body was dealing with severe muscle weakness, tight skin, intense joint pain, and the frightening loss of my independence.
And just as I was beginning this new reality, the world entered the COVID-19 pandemic.
The next two years were some of the most challenging of my life.
During the early months of the pandemic, I was on dialysis three times a week for five to six hours at a time. My schedule revolved around treatments and constant medical appointments with doctors and specialists. Life felt like an endless cycle of hospitals, recovery, and trying to keep moving forward.
But slowly, things began to change.
Six months into the pandemic, I was finally able to come off dialysis. From there, I focused on rebuilding my strength. I started walking more each day and gradually increased my stamina as I adapted to my new normal.
Today, six years later, I finally feel ready to share my story.
Trauma changes the brain, but so does healing.
I now have a strong medical team, a sustainable treatment plan, and the support of my family. Those things have helped me rebuild my life and move forward with confidence.
I am stronger, happier, and more independent than I once thought possible.
My daily routine now focuses on both my physical and mental well-being. I walk about 12,000 steps each day and incorporate stretching exercises that help manage my scleroderma symptoms.
But one of the most meaningful parts of my journey is raising awareness for other patients.
My motivation is to build awareness and educate others about scleroderma so that future patients can receive earlier diagnoses and have a better experience navigating the disease.
No one should have to spend years searching for answers.
This story was shared with Patients Rising and edited for clarity and length while preserving the patient’s voice and experience.