In recent weeks I have had a traumatic medical experience that has affected me in ways I couldn’t have imagined. I began to feel unwell three weekends ago and thought that I had been too busy and pushed myself too hard. That Sunday, I started running a fever.
Having Fabry means a fever can be unbearable, causing burning in my hands and feet. I am sensitive to fluctuating temperatures that lead to intense shivering and overheating from which I can’t cool down. I attended urgent care twice in one week with no diagnosis, and finally went to the emergency room after nine days with a nonstop fever.
My genetics doctor doesn’t believe that my sickness has anything to do with Fabry. However, the realization of how my health can affect my future got me thinking. I hadn’t stayed in the hospital aside from a night or two when I delivered my children. I felt as if I was in prison. The doctors couldn’t identify my illness, so I was quarantined. Anyone who entered my room was required to wear a mask, gloves, and a plastic smock. I was not permitted to set foot outside the room.
The nurses were helpful, but they seemed jaded and tired of taking care of people. I felt as if I was inconveniencing them whenever I pushed the call button. I’ve never felt so alone in my life. I follow several chronically ill people on social media and read their stories of horrifying health issues that keep them hospitalized for weeks and sometimes months. For the first time, I understand how hard it must be to go through what they do.
Since my diagnosis, I’ve seen myself as the healthiest version of someone with Fabry. This recent experience made me realize that it might not always be this way. The reality is that I could become very sick someday. This hadn’t occurred to me until I was in the hospital desperately wishing to leave. I have since had nightmares about being stuck in a hospital bed for the rest of my life.
I was unable to see my kids for the five days of my hospital stay. I’m a stay-at-home mom and being apart from them was incredibly painful. They struggled, too. I’m always home when they return from school; I get them up in the morning. My son didn’t know what to do without me.
I know that I will move past this new fear and get on with my life. Though I’m aware that I have a chronic illness, the reality of it hadn’t hit me. I want to make some significant changes in my life. And I’ve learned that my family and health are all that really matter.
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