Ehlers-Danlos mama trying not to twist things up *too* much!

Thursday, August 11, 2011

Wake Up Call

Last week I had a neurology follow-up, where I again mentioned my constant exhaustion. I hadn’t been seen in clinic for a few months, but the last time I was, the nurse practitioner who serves as my primary contact there ordered a bunch of labs, all of which were fairly normal. My iron was low, as was my potassium, but not low enough to be an explanation. My overnight sleep study wasn’t particularly helpful, either, although the NP also didn’t think absence of REM was in any was normal. She talked about prescribing a stimulant medication, but it seems the doctor she works with is quite stingy when it comes to scheduled medications, which both Provigil and Nuvigil are, and she confessed to having very little experience treating Narcolepsy and related sleep disorders. I believe her exact words were, “Believe me, you don’t want me prescribing your Nuvigil.” Hey, at least she’s honest. I wasn’t all that concerned, since I also see a pulmonologist who specializes in sleep disorders and seemed willing to try medication once I did the next sleep study.

Yeah, that.

I’m limited in where I can go for the study by my health insurance plan’s large deductible and by the privileges of my pulmonologist, whom I’d like to read the study, not just the report. Setting up the study took some work, as I was first booked (again) for a regular overnight study, which wouldn’t have provided the additional information needed to confirm or rule out narcolepsy. When they eventually called me back, they told me to come in on October 1st.

Two months?

I have come to expect to wait two months to see my daughter’s motility specialist, one of two in the entire country. But I’ve rarely had to wait two weeks, much less two months for any type of study at this hospital, which touts itself as being ranked #1 in the state in Patient Satisfaction for {Some Number of Years} Running!

And yeah, maybe you’ll blame it on my American-overprivileged-entitled mindset that I didn’t just write the date on the calendar and wait and deal--but I didn’t. One thing I have learned during my adventures in medicine is that not everything is as it seems, including wait times for appointments. (Check out this article if you don’t believe me.) So the first avenue I pursued was that of trying to procure an earlier appointment. No dice, at least not yet. I’ve gone around in circles with the scheduling center and played phone tag with the sleep lab, but unless I want to pay a hefty fee by going to another sleep lab, as I have yet to meet my portion of our insurance plan’s 2 person deductible, the October 1st appointment stands.

For a few days, I was almost ok with that. After all, I’ve been dealing with being tired for quite some time now. I enjoy coffee…and naps…and it’s getting close to Snuggie season.

This morning I reached my breaking point.

Monster had his outpatient Occupational Therapy appointment in the city, a 30 mile drive from our home. Cam had to work, so after getting Miss Puggle on the bus, I packed the three boys in the car. It was just before 9 am; I’d been up for maybe 2 hours.

By the time I reached the light at the top of the main road, a 3-minute drive, I was excessively tired. I knew that the drive was going to be painful.

I sucked down an iced coffee and a shot of espresso, praying the caffeine would counteract the overwhelming fatigue without wreaking havoc on my stomach and forced myself to stay awake and alert by rocking, shaking, adjusting the air & music and talking to the kids. When we arrived safely at Monster’s appointment, I called my pulmonologist’s office crying and asked if there was anything at all they could do to help me. Waiting until October for the MSLT, then for the results, then for treatment to start would mean giving up driving—at least for the most part. There’s no way I could continue to rely on caffeine and sheer willpower.

At first, the medical assistant told me I would have to wait to have the MSLT, but I kindly (but firmly) asked her to at least relay the message to the doctor that my sleepiness was negatively impacting my quality of life and the safety of myself and that of my children. She begrudgingly took my name and number. (Really? It’s just a message!)

Amazingly, I got a call this afternoon that my pulmonologist was calling in Nuvigil for me to try starting tomorrow morning. Finally. Something.

I’m trying not to get my hopes up too much, as I’ve had a lot of awful medication reactions, but I feel like a weight has been lifted. I have hope that life can feel normal again. Even if my life is stressful, painful and complicated, I’d like to be awake to experience it. I’m so tired of being tired.

We’ll see how it goes.

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