As I type, I’ve been on and off hold, transferred back and forth, with my insurance company for exactly two hours. This time, they’ve denied coverage for Ella’s upcoming appointment with a pediatric neurologist. We’ve been waiting to establish care with one in the state for at least a year. Every other doctor in the practice is covered, just not this one. It means the flights to Oahu won’t be covered either.

After this two-hour call, I’ll need to reach out to the office to see if any other provider can see her at the same day and time. If not, I’ll have to find out if credentialing is process, as the pediatric neurologist is new the practice. Then I’ll submit appeals to the insurance company for the visit and flights to be covered. If history is any indicator, those will probably fail.

This is just one item on today’s “To-Do” list. Also on the agenda:

• Call and write my neurologist, insurance company and primary care provider (PCP) office: The medication that prevents acute paralytic attacks is no longer covered.
• Call and message my immunologist and PCP: A rheumatologist has declined multiple referrals from both of them after a month of back and forth. (I’ve made at least six phone calls about this in the last month.)
• Call back the office of my pain management provider: The front desk forgot to tell her about my needed refill (last week). I only have one day left, and the medicine has to be flown from the mainland. Call the mail-order pharmacy and make sure it’s on its way.
• Call potential endocrinologist and update my PCP: She hasn’t heard back from an urgent referral request put in weeks ago. I found out the referral was declined, as the endocrinologist can’t see me until September. The potentially cancerous tumor on my adrenal gland will have to wait.
• Call pharmacy. The regular one has closed. All prescriptions need to be transferred for all of us. Four of mine need refills.
• Call cardiologist. A second opinion postponed the cardiac catheterization in favor of other tests first. Two appointments need to be cancelled and one made.

It’s no wonder I’m exhausted. Brain injuries mean someone has to work harder to do every day tasks. The brain has to make new pathways, and this takes time. Time I don’t have.

To get the best care, I have to be at my best (or at least pretend to be). Throughout every appointment, I must give medical context and history, listen and remember, ask and anticipate, sometimes with a preschooler squirming on my lap.

After a year of building a relationship with my primary care doctor, she moved back to the mainland. I had the stroke while waiting to establish care with her replacement. All the specialists and therapists since then are new providers to me. Nothing gives me more anxiety than a new provider.

Just like someone adapts after losing an appendage, living with a rare disease has given me a new normal. I don’t realize how odd it sounds until I hear myself telling someone else. I look crazy while desperately trying to appear as sane as possible.

Only five appointments this week between me and the kids.

Summer vacation should be about play dates, camps and just enjoying uninterrupted time with my kids. But the reality of recovery is that there is just nothing left in the tank once the tasks are done. I hide my health reality from others because more than anything, I long for the mundane.

“The kids would love to join yours at martial arts,” and, “Sailing camp sounds amazing,” and, “We should definitely meet at the pool.” I’ve said all these things in the last week. Every time I do, it’s like wishing a dream to come true.

I determine that getting to the park by the bay for a “roll and a stroll” to see the king tide with my guys is enough for now (see picture).

Hope is a tricky thing. Too much, and I’ll be disappointed. Too little will throw me into despair. All I can do is give each moment to God, looking for the gratitude and blessing where I can, knowing the future isn’t in my control. One day at a time.