Juggling life and its challenges is hard enough without NMOSD

Career changes, new home hunts, and symptom flares are a lot to handle

Jennifer van Amerom avatar

by Jennifer van Amerom |

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I’ve always believed that everything happens for a reason, but for me, it’s rarely convenient when it does. Is there ever a good time to have a neuromyelitis optica spectrum disorder (NMOSD) attack? Even if I could schedule when my body decides to have a meltdown, my life wouldn’t have room for this disease.

A couple months ago, my family decided it was time to downsize. Our home is unnecessarily big for just the three of us. There’s too much to clean, we have an excessive amount of stuff, and we want to travel more before NMOSD wins the battle. Our daughter also wants to live her own life.

Selling our home and buying a smaller one is already a daunting task, but then my health started to fail me. Two months ago, I had an optic neuritis attack that resulted in a partial loss of vision in my left eye. After five days of treatment with intravenous Solu-medrol (methylprednisolone), my vision slowly returned.

It’s not lost on me that stress can exacerbate my symptoms. Trying to manage a move while pursuing new career opportunities is stressful enough. Added to that, we’re not sure where our daughter will go to school this year. For nearly a decade, she’s attended a private French school where she’s excelled. But she asked to spend the summer auditioning for a full-time professional ballet school. If she gets in, it’d certainly affect where we live.

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Through all of this, the one constant has been my husband’s job, which has provided me with badly needed private health insurance. We live in Canada, where healthcare is free, but that’s only basic treatment. Private health insurance covers medications; holistic care like physiotherapy, massage therapy, and acupuncture; and vision and dental care.

Unfortunately, my husband was laid off from his job a couple weeks ago. While we were ready for a change, that adds another challenge.

The quest for private health insurance

Since being diagnosed with NMOSD almost 15 years ago, I’ve never gone without private health insurance. My husband has done an incredible job providing it for me. Until recently, I hadn’t thought about what life would be like without it. I’ll still be covered for a while, but I’m nervous about what lies ahead.

The obvious answer to this dilemma is for one of us to find new employment that offers private health insurance. But I want us to find the right fit, one that aligns with our passions. The alternative is to buy the insurance through a provider, but that’s expensive — and I might not even qualify because NMOSD is a preexisting condition that few providers want to cover.

In addition, my body decided to have yet another optic neuritis attack in the same eye as before, just a month after I recovered from the last one. It has my team of neurologists concerned. I want to think it’s just an unfortunate coincidence, but there’s a good chance that stress is playing a big role in this attack.

I’d prefer to tackle all of these changes gradually, but life seldom goes as planned, especially when health challenges are involved. I see myself as a resilient phoenix, emerging from the ashes to overcome every obstacle. Once the dust settles, I’m confident we’ll find ourselves in a place of greater happiness and, hopefully, renewed health.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.


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