Coping With Surprises in Life With a Rare Disease

I don’t like surprises. Almost every Christmas, my husband and I end up sharing what we bought for each other long before we find the gifts under the Christmas tree. Along the same lines, I would much rather plan for and anticipate a vacation than be surprised with one. So it’s understandable that I wouldn’t like surprises when it comes to our daughter’s health.

When Grace was diagnosed at age 14 with Lambert-Eaton myasthenic syndrome, I quickly realized how much I wouldn’t be able to control. Surprises became a way of life. I tried to anticipate needs and manage insurance, medications, and treatment options. But a new surprise was always right around the corner.

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Recently, I wrote a column about anticipating changes in our daughter’s healthcare as Grace’s 18th birthday approaches. I didn’t want any surprises and thought I had prepared for everything. Grace’s doctors all assured me they could continue seeing her until she was 21. I checked with the infusion center at the children’s hospital. They were confident they could still administer her Rituxan (rituximab) infusions. I contacted our health insurance company to make sure we didn’t need to take action to keep her insurance up to date.

However, at Grace’s most recent neurology appointment, her doctor divulged that he would be leaving his current practice to take a job in another state. I was devastated. This was the doctor who diagnosed Grace. He’s the only pediatric neuromuscular neurologist Grace has ever seen. The U.S. Navy moved us to this location for the specific purpose of being close to this doctor.

Grace’s current doctor also shared his opinion about which doctor he’d like her to see once he leaves. He has a vested interest in Grace and seems to genuinely care about her, so I take his recommendations seriously.

So I took my own advice and gathered a list of questions. Would our insurance approve a referral to this particular doctor? Is this doctor accepting new patients? If so, how long would Grace have to wait to be seen?

The questions seemed endless. I quickly organized my thoughts and prioritized my concerns. What action did I need to take today? What could wait until next week?

With information and time, I’m confident I will find the right fit for Grace.

Needless to say, all of my planning and forward-thinking did not prepare me for this unanticipated change. However, I’d like to think I handled this surprise better than I would have at the beginning of this rare disease journey four years ago. I can’t say for certain, but I do know I now have tools to manage the stress and uncertainty that come with changes in our daughter’s care.

Note: Lambert-Eaton 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 provider 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 Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.