Seriously, those were the first words that came out of my mouth when I first got the diagnosis. Then I just cried for several minutes straight. But perhaps I should start at the beginning ...
In the spring of 2001, I began having issues with insomnia. It wasn't particularly concerning, as I was newly wed, working full time in a somewhat stressful position, held a part time permanent gig as a church Cantor, was very active in the local SCA (Society for Creative Anachronism - a medieval reenactment and educational group - yes, I'm a nerd) group, as well as doing some occasional performing with a local community theater group. Nevertheless, I did bring it up with my doctor at my annual well woman visit. He gave me a prescription for a sleep aid and sent me on my way. However, a couple months later I noticed that while the insomnia had pretty much resolved itself, I was still feeling unusually tired. Constantly. I was also having a great deal of trouble keeping off the weight I had lost before the wedding (a considerable amount, actually, over 100 pounds over a 1 1/2 year period). So I saw my doctor about it again. He thought it was probably just stress from my busy lifestyle, but referred me to a sleep specialist to rule anything out. The specialist, as per protocol, I'm sure, had me sign up for a sleep study. She seemed to think my symptoms and weight gain might be the result of sleep apnea. I actually started feeling hopeful that there might be some medical rationale for my exhaustion, and I might be able to feel better again. Keep in mind, at the time I had extremely comprehensive insurance (working for the King County government), and it was fully covered, so paying for such an expensive test was not an issue for me at all.
Three months later (yes, it took that long to get in), I went in to the sleep lab for an overnight study. They hooked me up with wires and pasted electrodes to my head (yuck!) and put me in the bed for observation. I slept about as well as one could expect one to sleep, in a strange room in a strange bed with wires and electrodes hooked up to some machine, and a stranger watching you on a camera from the next room. I don't remember much else except for waking up and having the lab tech ask me how I slept. I remember telling him "Okay, I guess, though I did wake up a couple times." And I remember him telling me "More like a couple hundred." Which I think was more than he was supposed to say, because he wouldn't volunteer any more information than that. I had to wait a week or so until I had my post-study consultation with the specialist to get more information.
So there I was, going in to my final consultation with the specialist, fully expecting her to tell me I had Sleep Apnea and to give me my treatment options. To my surprise, though, her first words to me were "There was no sign of apnea in your sleep study. Everything checked out normal." Really? So the tech was wrong about the couple hundred awakenings? I didn't actually ask that, though. I'm afraid I was one of those bad patients who didn't question doctors or ask for a second opinion. Heck, I'm really not all that much better now. I'm just more skeptical. But anyway ... she went on to tell me that she had reviewed by sleep diary, and thought I just needed to be better about how much I slept, and needed a better routine, and that I was probably just one of those people that needed more sleep than the average person.
Great.
So I just resigned myself to being "one of those people who needs more sleep". And went on with my life. Lots of changes. Shortly after the study, I moved from the Seattle area back down to Bakersfield, CA. Gained all the weight I had lost, and then some. Moved back to the Seattle area after a year and a half. Got a new job. Remained active in SCA and theater. Lost another large amount of weight (though not quite as much as pre-wedding; this time was in the 80-pound range). Gained it back, and a little more for good measure. Separated from my husband and moved again (locally this time). Did another 100+ pound weight loss, this time incorporating a rather intense exercise program into the equation. Changed jobs (same company, same department, new position). Fell in love. Bought a house. Moved in with my beloved. Still remaining active in SCA and very active in theater. Good stuff, right?
Well, somewhere between "fell in love" and "bought a house", I noticed things starting to change again with my body. I started having insomnia problems again, and became a lighter sleeper than I ever had been. And my dear Brian has a snore that would wake the dead. When we were still maintaining separate residences, it was manageable. I would sleep badly when he spent the night (or the rare occasions when I stayed at his house -- his housemates had cats, and I'm VERY allergic), and kind of catch up on the nights we were apart. Not ideal, but manageable. Until we moved in together, that is.
At that point, there was no escaping the snore. Okay, that's not precisely true. There was an escape. A few, actually: the guest room, the living room, the downstairs family room. But I didn't want a roommate, I wanted a partner and a lover, someone who would snuggle me to sleep every night and whose face would be the first thing I would see every morning. So I tried everything I could think of. I tried earplugs, and white noise machines, and every $100+ contraption on the market for Brian to use. And my sleeping just got worse. He even went in for surgery to correct the snore, repairing his deviated septum and trimming his elongated uvula. The nasal surgery was a great success in that Brian is now able to breathe through his nose clearly for the first time in decades. The UPPP, on the other hand, put him through a lot of pain for very little payoff. Yes, his snoring was greatly diminished, but it wasn't enough to keep me from sleeping.
Meanwhile, I started exercising a lot less and eating a lot more, and gaining back all the weight I had worked so hard - yet again - to lose. I kept trying to get back in to the routine, but I was so tired I couldn't bring myself to go to the gym when I wasn't working late or rehearsing. And I was so hungry, I couldn't stay on any sort of weight loss plan for more than a couple weeks at a time before the cravings for sweet carb-laden foods would overcome me. I was having debilitating migraines 2-3 times per month that would last for days. And I noticed my blood pressure, previously normal, had crept up into a constant borderline high to high range on every measurement.
As bad as, if not worse than, the physical symptoms was just the constant and overwhelming fatigue and mental fogginess I was dealing with. I found myself afraid to drive long distances at times because I thought I might fall asleep at the wheel. I never did, though I did often have to resort to extreme measures such as blasting the A/C in the middle of winter, or slapping myself hard across the face every 20 seconds, to keep me at least somewhat alert. I would nod off in the middle of conference calls at work, if I wasn't directly engaged in a discussion or presentation. And I lost all my coping skills. Every minor setback became a major catastrophe from which I was sure I would never recover, and resulted in wild bursts of sobbing. At one point I experienced a complete panic attack during a business meeting that I was helping facilitate, when I felt the group was going too far off task and I was not able to bring them back. I broke out in hives and spent the entirety of a 10 minute break in the ladies room silently crying and hoping no one would hear or see me. I was wretchedly depressed, and certain that I was losing my mind. At several points I contemplated checking myself in to an inpatient mental health facility just so that I didn't have to deal with the pressures of the world. I felt like the world's biggest failure, as a partner, as a friend, as an employee, as a performer, and as a member of the human race in general.
Oddly enough, I was still able to win several "bucket list" dream roles in theater during this time, as well as start a small business partnership (taking over 50% of the Christmas caroling company that I'd been singing with for the last 9 years) and getting a promotion at work.
Meanwhile, my ability to sleep was getting worse and worse. Every little thing would wake me up, and sometimes I'd wake up for no reason at all and not be able to get back to sleep. It didn't seem to matter where I was, what I did or didn't do before I went to bed, nothing helped. I couldn't tolerate having Brian spend an entire night with me at all any more. Sometimes he would come in to bed and snuggle with me until I inevitably kicked him out for snoring too loud. Sometimes he would just go to bed in the guest room and kiss me goodnight before he went. I hated having to do this to him, but I couldn't see any other choice. We both argued a lot about his going in for a final consultation and having the final snore reduction surgery done, this last one being a surgical reshaping of his mouth and airway. I couldn't decide whether I wanted to spend the money and have him go through more pain, for something that might not be any more successful than the first surgery was.
My friends, trying to be helpful, I know, were full of advice on how I could manage the snoring and my insomnia problems. Some actually were somewhat helpful, like avoiding computer and smart phone usage right before bed (I was really bad at facebooking from my iPhone as I tried to fall asleep). But most of it just continued to frustrate me, as it was either useless (being told to "just fall asleep before Brian does and you won't hear the snoring" is completely unhelpful to someone who has trouble falling asleep in the first place, and wakes up at the drop of a hat), or actually harmful (for instance, the many suggestions of taking alcoholic drinks, or using earplugs that hurt my ears). I felt even more like some sort of hopeless, helpless freak.
During one of many nights when I held on to him, sobbing incessantly, feeling so overwhelmed by life I couldn't take one more minute, he asked me if I thought I should see a sleep specialist. I told him about the previous experience, explaining through my tears, "I don't have apnea, I just can't sleep well."
And things have just kept getting worse and worse. I've gained even more weight (though, thankfully, I'm not as high as my highest weight in 2010). I go to bed often as early as 8:00pm (when I'm not rehearsing, that is), and get 8-9 hours of sleep some nights and am still waking up feeling groggy and miserable. I wake up several times in the middle of the night for no apparent reason, falling back asleep in 5-10 minutes (if Brian isn't in the bed with me snoring; if he is, I have to send him out of the room, or go myself). Some days I wake up after only a few hours of sleeping, and am not be able to fall asleep again at all, but am still too exhausted to do anything but lie in bed and maybe read or surf the internet. I am cold all the time, sometimes to the point of being bundled up in sweatshirts and blankets (on top of my many inches of additional insulating fat), and still be shivering, but have no sign of a fever or illness. Sometimes I feel dizzy and lightheaded for no apparent reason, and can barely make it from one room to another without holding on to a wall to keep from falling down. I have taken to working from home almost exclusively over the past few weeks, unless I absolutely need to go into the office (which is almost never, since everyone I work with is scattered around the country in various locations), because I am far too tired every morning to be able to get myself up and ready and make the 45 minute drive to Mercer Island by my normal 7:00am start time. It literally takes me about an hour of being awake to be able to get out of bed. Again, I am extremely fortunate in that I can do my job from my home office and no one cares if I look like death warmed over.
In any case, it all got to me one day after yet another fight with Brian over his not making a follow up appointment with his surgeon, and my feeling ineffective at work, and realizing that not even performing was giving me the joy it used to (I was working on "Man of La Mancha" at the time, with an amazing cast and a great director, and I was too tired to enjoy it the way I knew I should be). So I decided to make an appointment with a sleep specialist at Valley Medical Center in Renton, the closest hospital. The information I got on line sounded good, and I also got recommendations from friends who had done sleep studies there. Most importantly, though, they were in my insurance network. No longer working for the government with their extremely generous benefits package, I'm a little more concerned about medical expenses, now that I have a large deductible to meet, and a larger chunk of all expenses to pay after that. Still, I was willing to pay, if they could get me some help and stop me from feeling like crap all the time.
So I made my appointment, and went to see the sleep specialist. At this point I was extremely nervous, and, frankly, expecting to be dismissed the way I was before. I was prepared to have to fight to be taken seriously, but fight I would. Turns out, I didn't have to. Upon hearing about my previous experience at Auburn General, the doctor gave me a rather surprising, but completely believable explanation. His supposition was that I'd had borderline sleep apnea back in 2001, which the doctor wrote off as "non-apnea" because I didn't fit the risk profile of being a large necked, obese, middle aged male who snored (in fact, at the time, I was none of those things). And that sleep apnea did worsen over time if untreated, and I was probably well within diagnosable range now. He wanted me in for a sleep study as soon as possible. He also seemed pretty shocked that the original specialist had been so dismissive and not prescribed any sort of treatment for me other than "get better sleep".
The dollar sign warning bells started going off in my head. Sleep studies cost thousands of dollars, and I was going to be on the hook for a good portion of that. Plus, I wasn't sure it was going to find anything more conclusive than the first one. Still, I let him go get the nurse who would schedule my second sleep study. Surprise #2 -- My insurance company would only authorize an "at home" sleep study. What?!?! I could do this in the comfort of my own home and my own bed?!?! At a fraction of the cost of a sleep lab study? Oh hell yes!
So I came by the next week to pick up the polysomnograph machine and let the tech show me how to hook it up and turn it on. I was immensely flattered that she kept referring to me as "one of her younger patients". I don't often feel young at 44, but again, I'm still not fitting the profile of a sleep apnea patient. Apparently most women don't have issues with sleep apnea until after menopause. Lucky me, the early achiever. And it is still a much more common disorder in men than in women.
That night I hooked myself up to the machine, as I was instructed, got into bed, and hoped for the best. Naturally, I kept thinking of everything that could go wrong: the machine wouldn't work, some vital piece would fall off, I'd touch the wrong button and accidentally turn it off, or maybe I just wouldn't sleep at all, rendering the study null and void. I needn't have worried. I slept about as well as I normally do, which isn't great, but it did feel like sleep. I figured they would at least have a good basis to go on. Again, I wasn't about to get my hopes up. Though at this point, if they didn't find out anything on the home study, I was going to insist on a lab study to make sure.
My follow-up appointment was scheduled for 2 weeks after the study was done. I wasn't expecting to hear anything until then, as that was what had happened to me before. So, surprise #3, I get a call just 4 days later. On a Monday (the sleep study was done on a Wednesday night). From the doctor's office. They had reviewed the results from the sleep study, and I definitely did have sleep apnea. The doctor recommended CPAP therapy, and wanted to make sure I got started as soon as possible. They were putting the pre-authorization paperwork through my insurance company that day so that I could get fitted and take it home after my follow up appointment. I then spoke with someone in the DME (Durable Medical Equipment) facility who explained what my insurance was going to cover and what I would be responsible for. This part did have me a bit concerned, especially having just bought a new car (totally unrelated to the sleep apnea thing), but I was determined to do what the doctor said and follow the treatment plan. I had an actual medical condition! And it could be treated! It wasn't all in my head! And ohmygodandbabyjesusonaunicycle ... I might actually start feeling normal again!
It was then that I started to cry. Only this time, they were not tears of frustration and hopelessness, they were tears of relief.
So, I have my follow up appointment on Wednesday. I get fitted for a CPAP mask and get my machine the same day. I am hopefully optimistic that I might actually get a decent night's sleep on Wednesday night. More to come after that.
