The Terrible, Horrible, No-Good, Very Bad Sleep Study

So as much as I complained and said 'I'm not going', I went and had the sleep study done. It's over, I'm alive and relatively unscathed. However, I'm thinking I really should have just stayed home and rescheduled. Something didn't feel right when I met with the doc the first time and I'm usually right on when it comes to my gut reaction.

I guess the first incling that something wasn't right was how quick my meeting was with the neurologist and how disinterested he was in my response. Though I was relatively calmed down when he said that 'the good news is, you don't have narcolepsy. you're not falling asleep when you drive or at the movies. that's a good thing.' Woohoo, I got a good report. However, when he asked me questions, he just didn't seem too interested in my response. Like the fact that I flat out told him repeatedly that I only have trouble sleeping when I'm in pain and that the less I sleep the more pain I'm in, the more pain I'm in the less I sleep.

And he really didn't seem to be interested when I told him that I know there are several nights that I just stay awake reading because I know that I've got nothing going on the next day. So if I happen to sleep until oh, say, noon that it doesn't matter. I did let him know that there are days when my fibro is just all wonky and I'm awake and that on those days I'm tired during the daytime too. But it's part of the disease. He just didn't seem to like that everything had an explanation. And I get it, lets have the test just to rule things out.

I was never opposed to the sleep study. I had issue after the appointment when he said (and might I add AFTER looking at and verifying my insurance info again) 'yeah, we'll add this nap test too' and walked out the door. I was left with his tech staff to show me the facilities so I knew where I was going and what to expect on THE day. So the other thing that got my 'ally-senses' all a tingle was when I asked the tech, who couldn't speak or understand English all that much why I needed the nap test and what it was. All she could say was 'you just do.'

OK. . . maybe it was lost in translation. So I try my best to quiet that little inner voice that was getting louder by the day. I kept saying, it's one day, it's no big deal, you've got tv, internet and you'll be sleeping, how hard can that be? So I arrive to the brand new building on the night of my test with my overnight bag, my laptop and some water and snacks (they encouraged packing food). It was the first of several days that were in the triple digits so I was very glad that I was going to be in, as they promised, my own individual climate controlled room, I can't sleep if it's hot.

Had I known that their idea of individual climate control was a fan on a stand and that their AC unit wasn't working, I'd have waited until things got fixed or had gone to a different office for the test. If they want me to sleep, I can't do it when I'm uncomfortable. However, I told myself that this was like a band-aid. I just had to get it over with. Besides, it always gets cooler overnight, it can't be that bad. If only I was prepared for what to come. Rather than write it all out, I'll list what exactly went wrong once they started putting on those thingamabobs to read my brain.

1.) No internet. Tech, who like tech on first office visit and all office staff, is from Russia and speaks very little English. She tells me that she called the office manager about the problem and that the office manager will give it to me tomorrow. Whatever, I was getting ready to sleep, as long as I had it by the next day when I was confined to the box, I'd be ok.

2.) There's a train. It is a parking-lot depth from the building. A BRAND NEW building. It runs by every half-hour. It shakes the building and it's loud. WHO puts a sleep study office a 'peaceful and tranquil sleep environment' <--their words not mine, RIGHT BESIDE A TRAIN?!

3.) The building is underneath the flight path for the helivac for the Berks and Lehigh Valley so every medical evacuation that required helicopters flew RIGHT over the building.

4.) It was soo hot that the little dohickeys kept MELTING off of my head not only pushing back the time that it took to do each nap test but disrupted my sleep at night. It was also so hot that the machines that were hooked up to my dohickeys were overheating. It was so hot that I had to change rooms because the machinery in my first room overheated too much.

5.) The internet was not fixed. After 3 weeks of being in their brand new office their phones and internet still did not work. So if your AC, phones and internet don't work - why the hell are you in your new office? How can you run your business?

6.) Thankfully, I had internet on my iPhone. So I looked up what exactly a nap study was because they still wouldn't tell me what it was and why I needed it. They also wouldn't get a doctor to come in and explain it to me either, even though I saw not only MY doctor but the other doctor in the practice as he walked down the hallway. A nap test determines if a patient has narcolepsy. WAIT, say what?! Remember that discussion that I had with the neurologist when I was at the first office visit. He flat out told me that I don't have narcolepsy. So why then, am I getting tested for it? Wonder if that has anything to do with that verification of my insurance that he did before he walked out the door. . .

What really bothers me, is not the fact that it was near impossible to sleep, that it was way too hot and that they flat out lied about the peaceful environment with internet and climate controlled rooms. What bothers me is the fact that as a patient, I had questions, regardless of how stupid they thought they were. They could have answered them and if they couldn't, they should have found someone that could. That fact alone was what had me sitting in a box of a room near panic attack. I don't like being told 'just because.' Especially when it involves my health. I mean, just because my insurance covers amputations doesn't mean I'm going to go to the hospital and just have them start whacking away at my limbs 'just because'.

I felt taken advantage of. So needless to say, I am not going back to this particular office for the results of this test. And I sure as hell am not going back if I need to have another one done because of any malfunction of the equipment because of the heat. There are other specialists who work at the hospital and even in King of Prussia that I would gladly go to. I have no aversion to the test(s) itself. I should have taken the clues at the first visit when the doc was too busy and disinterested in what I was saying that I should have asked about other options.

It was a calamity of events, and seemingly only something that would happen to me. I tend to have the luck of a series of unfortunate events that follow me around. I either go big or don't go at all when it comes to these kinds of situations. Lesson learned, I've got to listen to what my 'ally-senses' are telling me and just go with that initial gut instinct. Hopefully there was something to learn from this experience. Maybe they found something that will help with the FM or nothing at all and this was just one more thing to rule out. Either way, there has to be some good from the bad.