Resilience

I’ve wanted to write before now but it’s a little tricky to be talking about your medical progress when you’re on FMLA. Better safe and discreet than sorry.

I’ll keep it brief.

My nightly oxygen has been increased twice since I last checked in, but oxygen alone hasn’t solved my issues.
My pulmonologist and my psychiatrist both prescribed Nuvigil to augment it. After fighting them for a couple of months I finally started taking it everyday. Nuvigil treats excessive daytime sleepiness. Like other medications that encourage any kind of “up” activity in the brain, it scares me because of the bi-polar disorder. Mania is very frightening. It can ruin your life.

But the thing about Nuvigil? It works!

I had originally thought: I’ll ask my doctor to send me back to work when I have two good weeks. Two weeks without fatigue. With regular Nuvigil I reached that point and I was overjoyed. The word of my day was: resilience.

I felt resilient again. Like I could count on myself. To work. To be bright and sharp and productive. To travel for my job and not endanger myself by falling asleep in an airport or behind the wheel. To be innovative and creative – on the job and off.

To take care of the day to day. To plan for the week’s grocery shopping knowing I’d have the energy to prepare meals and not start pre-shopping conversations with Hubby that went like this: “Can you eat PB&J and eggs and toast for dinners this week?”

And to play. To go hiking on the weekends with hubby – to go to writing workshops – to go out to dinner with friends.

Not to plan all of my activities around inevitable daily fatigue.

But most importantly I felt emotionally resilient. I didn’t feel like breaking into tears all afternoon from exhaustion. I stopped worrying about what would happen to us if I had to drop out of the workforce.

Then, last week, before I could even see a doctor to write me a “back to work” slip, the fatigue came back. My emotional resilience is still with me but I’m spending a lot of “quality time” with me, myself and my couch. Horizontal. I had another regularly scheduled appointment with my pulmonologist today. He said this happens. It’s called medication fatigue. His advice was to stop the medication for three weeks and then go back to it. When I don’t have the medication every day I spend pretty much the entire day after 2 pm lying down and then I go to bed. It’s a struggle to sit up long enough to eat a meal. It’s a struggle to stand long enough to shower. It’s not an option. In that case, he recommended extra mid-day doses and referred me back to my psychiatrist, worried that anything else he recommended would tip my balance.

The cost of Nuvigil is outrageous, we can forget about prescriptions for it. But there is a drug that’s just one generation older that’s essentially a shorter acting version of the same medication. And it has a generic. And my insurance doesn’t pay for it (appeal denied). U.S. cost is $435 per month. I’m ordering it from a Canadian pharmacy. Perfectly legal, doctor’s prescription and everything, $75 per month. That’s one option and I’m going to explore it first. The second that my psychiatrist is thinking about is a stronger stimulant.

So, I’m in wait and see mode. My doctor didn’t clear me to go back to work full time today – I’m simply too fatigued yet and we haven’t found a medication that works consistently. At least I can always count on being able to work and be productive in the mornings. My supervisor is being really great about this. I’m being consistent about doing good quality work while I’m at work and not calling in sick any more frequently than someone without a pressing medical condition.

I work on maintaining a good attitude and losing weight. While the pulmonologist isn’t willing to say this is weight-related, I am a big girl and my psychiatrist is perfectly well able to explain how obesity interferes with the diaphragm and breathing. I’ve lost 30 pounds so far.

We’ll see. I appreciate your good thoughts.