Daily living

Tests, treatments, and medical procedures are important, but they can be a hassle and are sometimes painful. I don’t always know what to expect, which creates anxiety, especially if a needle is involved. As a neuromyelitis optica (NMO) patient, I have had bloodwork, MRIs, and spinal taps, and I…

As a rare disease patient with neuromyelitis optica and comorbidities, my medical care is complicated. I have an extensive healthcare team that includes: a family doctor a neurologist and neuro nurses a rheumatologist three pharmacists a home infusion nurse an immunologist three endocrinologists a physiatrist a gastroenterologist…

Summer has always been a struggle for me. While most people celebrate the warmer months and are off enjoying the great outdoors, I dread this time of year because I am very heat-sensitive. As soon as the temperature rises above 22 C (72 F), I feel terrible. The signals…

As a neuromyelitis optica (NMO) patient, sometimes I am under the impression that I am at a disadvantage compared with my healthy co-workers. Some of the daily routines that they complete effortlessly are a struggle for me. For this reason, at the end of my workday, I often feel as…

In early April, I became a grandmother (Gigi) for the first time. Reaching this important milestone gave me pause. In the months leading up to the baby’s birth, I thought a lot about what kind of grandmother I would be. Phoenyx was born just 16 days after my 50th birthday,…

My quest to become a wheelchair owner and user began with pitching the idea to members of my care team. As I shared in my last column, that didn’t go as smoothly as I’d hoped. But being persistent paid off when one of my doctors stepped up and…

When I was being diagnosed, my initial MRI revealed that I had long lesions over several sections of my spinal cord. While I knew nothing about the disease I was about to be diagnosed with, I understood that any damage to my spinal cord was bad news. It meant I…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

My disability, caused by damage from neuromyelitis optica (NMO) attacks, often prevents me from fully participating in social events, outdoor events, and other activities. However, I still choose to participate in some of them, rather than not participating in any. This isn’t to please others, but rather to avoid…

One of the most difficult aspects for me of living with neuromyelitis optica (NMO) is dealing with chronic pain. It’s what most affects my quality of life, but in my opinion, it’s also the least addressed and treated issue. In 2012,…