Hypnos: Epilogue

Hypnos - In Greek Mythology, the personification of sleep (By user:shakko (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons)
Hypnos – In Greek Mythology, the personification of sleep
(By user:shakko (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons)

Last night was sleep study number two. If you’re just tuning in, you can read about night one and the morning after here and here, respectively. The point of last night’s study was to test my breathing on the CPAP machine. For you laymen out there, CPAP stands for Continuous Positive Airway Pressure. Essentially, when the wearer inhales, the CPAP machine assists by forcing an amount of pressure and air into the airway, thereby preventing apnea-or more specifically in my case Obstructive Sleep Apnea. When a patient experiences OSA, his/her airway collapses, preventing oxygen from traveling to its natural habitat inside the human body, the lungs-and ultimately the blood and other organs. Hypoxemia (lack of oxygen) can effect the human body in numerous ways, including but not limited to sleep deprivation, fatigue, weight gain, seizures, heart disease, organ failure, and death. To name a few.

I went to the hospital last night expecting the same as before, electrodes and wires and sticky things stuck all over and around my body. I was fitted with these contrivances by an all too giddy therapist, taking a shot in the dark here by assuming she’s with respiratory. While attaching all these wires and whatnot, she explained the benefits and importance of using a CPAP machine when one has OSA. She described the mask to me, how it works (of this I was already vaguely familiar as my son Robot Boy is ventilator dependent). The CPAP machine I’ll use is much smaller and less complex than his vent, and I will only require it during sleep. RB is on CPAP mode during the day, but he is on the rate at night, meaning the ventilator is giving him breaths instead of simply giving him a small amount of pressure support.

After being fitted with all these niceties (used with extreme sarcasm) and taking my sleepy time medicine, I lay on my back -per the instructions of the overly giddy Paula Dean-esque therapist. It wasn’t long before I fell asleep. First there were some exercises to perform. “Turn your eyes to the left and the right,” Paula Dean said over a monitor. “Leave your eyes open for thirty seconds.” This is more difficult than it seems. “Open your mouth for ten seconds.” Breathing (and talking) while wearing the CPAP mask with the machine on is quite strenuous. Imagine having extra air pushed into your lungs while you inhale to say, ” Yes”, “That’s comfortable enough”, and “I have to go to the bathroom.” That is what’s happening.

I know I was in REM sleep for a while before I started to drown. I was underwater, a whale-shark with its gaping maw inhaling seawater instead of oxygen. My mouth was open, and I was gasping for air, but with the CPAP machine administering positive pressure, breathing through my mouth became arduous. I was suffocating. My brain told me to remove the pulse/ox on my finger to call the therapist. I did, or rather dreamed I did. Twice. Before finally waking up, chugging air down my partially collapsed airway against the positive pressure that was, at the time, less of a help and more of a hindrance.

I tore the pulse/ox from my left index finger as the therapist was coming in the door. She explained she should increase the pressure. I agreed. The thought of having more air in my lungs was splendid. Paula Dean adjusted the machine, and I lay back down, trying to recover and relax. As a lifelong insomniac, it’s not a simple task for me to wake and fall back to sleep on a dime. So for about an hour I lay there with my eyes closed trying to sleep and trying not to concentrate on the air being forced up my nose.

My back was hurting. I turned my legs to the left with my torso straight. Paula Dean came back in. “What’s the matter, darling? You’ve been awake a while.” “My back hurts.” “I thought it was your back. Do you want to lay on your side?” I said yes, and turned onto my left side with my legs pulled up. I had to pee, but I didn’t want to with all those attachments. Hoping I could ignore the need, and everything else involved, I closed my eyes hoping for more sleep.

The new position meant the mask shifted, and I had a strange farting noise resonating off my cheek and into my right ear. I adjusted my face, and the farting stopped, but it was followed by a leak of cold air that, when blowing across my face, aggravated an old cheek bone injury I’d incurred several years ago when I fell flat on my face, knocking myself unconscious. This went on for another length of time before I decided to try to adjust the mask. I did finally and closed my eyes trying to sleep again.

The sound of the machine, with its pressure forcing air into the mask, sounded like ambient ocean background noise. I imagined waves coming onto the beach and sweeping back out again. I imagined torrents crashing into high rock walls. Nothing made a difference. After however long, Paula Dean came back into the room and asked what was going on again. I admitted I had to pee. She obliged, but all the wires had to come with. After taking one of the most careful pees of my life, I returned to bed. I decided to lie on my back, assuming the corpse pose.

Corpse Pose via Yoga Journal (http://www.yogajournal.com/poses/482)
Corpse Pose via Yoga Journal (http://www.yogajournal.com/poses/482)

It worked. After just a few minutes, I fell back to sleep. I dreamed odd and vibrant dreams for about three hours before Paula Dean came in to wake me. “I let you sleep an hour later than usual since you were finally sleeping so good.” I stayed in a deep REM (rapid eye movement) sleep for over an hour. “That’s a really long time!” exclaimed Paula Dean.

After brushing my teeth, using the bathroom yet again, and  filling out some paperwork, I was escorted outside to the parking lot. I said goodbye to Paula Dean and went to my car. I rolled down the windows and turned on the windshield wipers to remove the overnight condensation. I plugged my cell phone into the charger and checked Facebook (priorities!), and then I turned on the radio. Low Rider was playing. I raised the volume to an unacceptable decibal level, put on my eye patch, and drove home.

Low Rider written by Charles Miller and the band War and appearing on their 1975 album Why Can’t We Be Friends? (Wikipedia http://en.wikipedia.org/wiki/Low_Rider)

 

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We’ve Not Reached a Stalemate

“All the world’s a stage, and I’ve been given the part of Job.” – Me to one of my friends yesterday after sharing the results of a recent opthamologist’s appointment.

It all started in September or October 2009, near the end of my pregnancy. I started noticing an odd problem I’d not previously experienced, double vision. Not only was there double vision, my eyes were visibly turning inward, and I had no control over my eyes’ movement.

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1/31/13 at the opthamologist’s office, after my eyes were dilated. I couldn’t see anything I was doing. Surprised I actually got the pic.

I told my OB/GYN, and we hoped it was a temporary problem that would correct itself, like so many other strange conditions that occur during pregnancy. For the rest of my pregnancy, I tolerated the double vision. After RB was born, I experienced severe carpal tunnel syndrome and swelling in my hands and wrists, so severe that I could hardly bend my fingers. I used most of my Rx pain meds for the pain in my hands more than the pain from childbirth. The eye condition continued, and I lived with it, assuming it would go away eventually like the hand swelling and other transient effects of bearing a child.

By summer of 2010, the ailment hadn’t improved. Driving at night was becoming impossible, and I kept one eye closed or covered most of the time. With the urging of many friends and family members, I made an appointment with an opthamologist. I wanted to see the surgeon who’d performed my Lasik surgery in 2005, but he didn’t have any appointments available. I went to one of his associates. She examined my eyes and explained the condition is more commonly a pediatric malady, for which I’d have to see a pediatric opthamologist.

It was my first visit to CHNOLA, long before RB’s intrusive alien interloper took up residence in his brain. The doctor I saw explained my ailment as intermittent esotropia (AAPOS http://www.aapos.org/terms/conditions/48).

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Photo c/o The Eye Specialists Center (http://eyespecialistscenter.com/detection-treatments/strabismus-amblyopia/esotropia.html)

What the diagnosis basically means is that my eyes turn inward because of a weakness in the muscles that control my eyes. For good measure, a CT scan was conducted and showed only a small polyp in my sinus cavity. Hoping treating the polyp would help resolve the esotropia, the sinus problem was treated. And, in a week or so, the esotropia disappeared. Yay! Thank goodness that was all over. . .

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Marty Feldman, Igor, in Mel Brooks’s classic Young Frankenstein. I’ve been likened to Igor, lovingly, over the past few years.

 Unfortunately, it wasn’t all over. Only a day after my follow-up appointment with the opthamologist at CHNOLA, the esotropia returned. Well, it isn’t that bad, I thought. I can live with it. I have more important things to worry about. Besides, there were two solutions to the esotropia problem: 1) Prism glasses which cost $500+ and are not covered by my insurance or 2) Surgery.

I ignored the problem. I drove with one eye closed. I watched TV with one eye closed. I did just about everything with one eye closed. I stopped making eye contact with people. But to me, my daily routine wasn’t effected that much.

Fastforward to late 2011, RB starts getting sick all the time. Here’s a brief rundown for those of you who are just joining us. (You can read more about Robot Boy  here.)We’re at his pediatrician’s office once a week. He’s admitted for pneumonia in December. By January 2012, he stops walking and starts suffering dizzy spells that cause him to fall down. We’re still at the pediatrician weekly. March 3 2012, he isn’t breathing. We come to the ER at CHNOLA.

Esotropia becomes a non-issue. We embark on an epic journey that if written could only have been penned by Homer, or perhaps more appropriately, Dante. We spend nearly a year in-patient through RB’s treatments, tests, scans, infections, and changes in feeding, fluids, and medications. (We’re still in-patient, by the way, but we do have a pending date of discharge.)

November 29 2012, I finally take the advice my aunt gave me two years prior and visit a rheumatologist. Since childhood, I’ve experienced odd symptoms and been diagnosed with everything from IBS to juvenile arthritis to osteoporosis. My body is hurting. I can barely function, and I know the time is drawing near that I will be home with my disabled son. I know I will have to be at my best to be the best caretaker for him. I make a list of diagnoses, tests and their results, and my symptoms. The doctor goes over my papers and says, “Fibromyalgia.”

I’d suspected the diagnosis, as I’m familiar with the symptoms, and I fit every damn last one. He prescribes me meds, gives me encouraging words about RB, and sends me on my way. I take the initiative to be serious about my health. I start eating better and exercising again. I start doing yoga again, every day. I take my meds, and I give up caffeine and alcohol. (Update: I had a follow up appointment with the rheumatologist last week, and he is very pleased with my progress. I feel great, and I’ve lost over 10 lbs since my first appointment with him. You can read more about my first visit here.)

By now, my esotropia is becoming a royal pain in the ass. I take to wearing a patch.

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This cool rockstar/pirate look is going to be difficult to give up.

I finally decide to make an appointment with the opthamologist, something I should have done months ago since he works here at CHNOLA, where I’ve been living for nearly a year. The diagnosis is the same, and I’m again given the options of the prism glasses or surgery. I opt for surgery. First of all, my insurance will pay for surgery but not the glasses. Secondly, I need a permanent solution that won’t put me back in glasses after I’ve already had surgery to be free of them.

I’m currently waiting for a call to schedule the procedure. It’s outpatient, but moderately invasive. I will be under general anaesthesia, and the doctor advised it will be a few days before I feel fully recovered from the anaesthesia. The pain is supposedly  minimal. Two months from the surgery date, I will have a follow-up to find out just how well my esotropia has improved, or -more hopefully – has diminished entirely.

So raise a glass for me, Old Job, as I’m sure ‘Ol Mephisto is moving his bishop. We’ve not reached a stalemate, yet, and we’re not intending on it.