New Beginnings: A Lullaby

There’s something to be said for having a chance to rebuild oneself. In mid-November of 2007, I began having significant troubles with sleep–I’d come home from work, sleep, wake up to get ready for bed, sleep, and have difficulty staying awake and alert while working. I would be having a conversation with someone, then as I was speaking, I’d realize I had no idea whatsoever as to the nature of the conversation I was having and would have to stop and ask, “What were we talking about?” I thought I was losing my mind. As Lead Unit Secretary at a local hospital, I was working 10-hour days, so of course I’d be tired at the end of the day. Yet…

When, on November 14, 2007, I fell asleep while typing a physician’s orders into the computer, and flopped over onto the the (strategically placed but nonetheless surprised) chaplain, we knew I was more than just tired. He caught me, but they couldn’t wake me sufficiently, so they carried me to an unoccupied room until Greg could pick me up.

Since we had been planning to take December off for medical leave, this just bumped the date up. We were referred to one of the best Sleep Medicine physicians, who had a night-to-day sleep study performed. After the study, we got the diagnosis: a rare sleeping disorder called Upper Airway Resistance Syndrome. I don’t understand all of it; all I know is that for me to stay awake during the day, I need to follow a strict medication regimen (Greg has the honors of delivering my first dose via j-tube every morning just to wake me up in the morning). If I don’t take the medication at the right time and dose (which is over twice the dose recommended for adults), I fall asleep and it is extremely hard to rouse me. I’ve slept through alarms, kitty prowling trying to wake up somebody for breakfast, breaking my shoulder blade on a road trip, and even having a .9mm needle poked into my chest (for the port-a-cath). I sleep deeply, but my respiratory system continually deceives my body, attempting to convince it that it requires around 18-20 hours of sleep per night, rather than the recommended 8-9 hours. A couple of months ago, I took a “Ritalin vacation” (no Ritalin for two full days). I slept for 37 of 48 hours; the only times I awoke were when Greg would wake me to get up and have something to drink and get my other medications and such. So despite the severity of my intestinal disorders, the reason I was dragged kicking and screaming into disability is that my sleep is so unpredictable and often unrecognizable–and even with the Ritalin I fall asleep quite often. The Syndrome is not curable, nor even treatable–merely, as the Doc says, it’s somewhat manageable.

I am thankful for Social Security Disability–even though for a long time nearly the entire check went to pay for health insurance premiums for Greg and me, and I often feel useless and lazy. But it has allowed me to pursue some hobbies and I’ve actually become a professional photographer. So while I still chafe at the knowledge that I am on disability, I know that in many ways I have been enabled to do things I never dreamed of. There is life after disability, it’s just different. If we could just get my body and its sleep needs to straighten out, I would be back in the work force in a heartbeat; unfortunately, it’s a respiratory restriction problem (unlike sleep apnea), and there is no “reset” button for the brain’s normal circadian rhythm. In fact, when we first saw this sleep medicine doctor, he told me I fell asleep three times within the first five minutes of conversation; then after the sleep test he let me know I had been within three days of dying from sleep deprivation–all because my airway restricts and I have to work so hard to breathe at night. Wow.

Anyway, that’s update numero uno for my new dedication to blogging. Still on TPN, still wishing I could work (though I have sold several photographs and hand-made greeting cards). But life goes on , and we’re going along with it.

About Jenn

While pursuing my literary and professional goals, I managed a severe form of gastroparesis (paralysis of the stomach) for six years, now complicated by full GI failure and a nonspecific autonomic failure of unknown etiology. In August of 2010, I finally had my stomach removed (total gastrectomy) to stop the 24/7 nausea and to lessen the risk of spreading infection to my central IV line (port-a-cath), as both of my gastric tubes (one G-tube in my stomach; one J-tube in my small intestine) were chronically–and extremely painfully–infected for longer than a year. I couldn’t possibly have survived the six-plus years of TPN (IV nutrition), surgeries, new (and unrelated) diagnoses, and being forced to go on disability without my amazingly supportive, encouraging, adoring, patient Care Partner and husband, Greg (married 1999)… Who reminds me of the unconditional, perfect love of God as shown through His Son, Jesus. My writing credits include The Da Vinci Code Adventure and Two Roads Through Narnia as well as several movie review compilations. Not all of the entries are health-related. My conditions have finally settled into a quasi-normal routine. There will be ebbs and flows, but I am still active, and plan to live as long as I’m alive.
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