So I decided to spend an exorbitant amount of money to have a night away to sleep in a quiet room where I will have no distractions.
Just kidding. I’m having a sleep study done tonight. But I am spending an exorbitant amount of money.
My primary care physician has this idea that because of my fibro, I also have sleep apnea. I tried to explain to him that in order to have sleep apnea, I would have to actually have time to sleep. Robot Boy was with me at the appointment, and the doctor admitted he understood I probably didn’t get to sleep much or for long periods of time. Still, he insisted my daytime fatigue is caused by sleep apnea. Not, you know, the fact that I sleep two hours and am up for three to care for RB, then sleep for another hour, and so forth. That has nothing to do with it.
At any rate, if I want to get this Igor Eye corrected with surgery (that is the medical term for the condition, BTW), I must be cleared by my PCP. And he won’t until he is certain I do or don’t have sleep apnea.
At least the digs are nice here at the hospital. I was expecting an uncomfortable hospital room, utilitarian and quotidian-like the rooms I’ve been living in for the last year. I’ve seen RB have three sleep studies, and none of them looked comfortable or tempting.
He was covered in electrodes and wires and had belts strapped across his chest. How one is supposed to sleep in that condition, I don’t know.
I will have to be attached to these things as well, but the room resembles more of a comfortable hotel room than a hospital room.
I have a notorious love of hotels. Don’t ask why, because I don’t know. I have just always felt comforted and excited by staying in a hotel. Maybe it’s a reminder of the excitement involved with vacationing. Maybe I’m just a freako. Who knows?
This room seems nice and soothing. I hope I can sleep with all those wires and whatnot attached. I am so looking forward to a night of uninterrupted sleep. I’m also looking forward to getting the results of the test that will hopefully show I do not have sleep apnea.
We don’t need RB and me on a CPAP machine. I wouldn’t even have time to wear the damn thing!
“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.
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).
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. . .
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.
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.