I made the mistake of telling my doctor that I have been extremely exhausted, sweating profusely, and experiencing palpitations and shortness of breath. I love my doctor dearly--he is the best one I have ever been to and I love that he takes me seriously and doesn't dismiss my concerns, but I opened myself up to a whole world of testing that I didn't even know existed. Probably a good thing to make sure nothing is seriously wrong with me, but I am beginning to feel like a guinea pig or a pincushion.
First, he drew blood to check my thyroid, cholesterol, CBC, etc. Then he sent me to get a chest x-ray. Chest x-ray was clean; the blood work was fine except for some high liver levels. He ordered Hepatitis tests, but they were negative.
Next, I was sent for a nuclear stress test. This is like a normal treadmill test, only they also shoot radioactive stuff into your veins. The first day, I came in and they set me up with an IV and electrodes and stuck me on the treadmill. Now, the worst part of this test was that before they attached the electrodes, they sandpapered my skin to get rid of any dead skin. WOW! The electrodes they put on those spots inflamed the skin they had scratched, so I had bright red irritated spots all over me. At the risk of sounding like a big baby, that HURT! After the redness went down, I had scratches in those areas. Looked like I had a weird case of carpet burn or had survived an attack by a seriously methodical and deranged cat. It didn't take long, walking on the treadmill, for my tachycardia to kick in and I overshot their target heartrate. At first, I tried to chat with the techs in the room, but as my heartrate shot up, I couldn't catch my breath and my priority became getting enough oxygen, not what they were doing this weekend. Funny how your outlook can change in a matter of seconds. They injected the radioactive ooze and then kicked the treadmill up in speed and incline. They told me I had to do it for 30 seconds. Thank God that's all they expected because any more and I would have looked like one of those losers on America's Funniest Home Videos, faceplanting into the conveyor belt! They made me go out and eat something and drink water and then they took me in to the machine that would take pictures of my heart. They did one set on my back and one on my stomach. This was the other challenging part because having acid reflux and just having eaten, lying flat on my back or on my stomach represented a challenge in keeping my food where it was supposed to be. The next day, they had me come back. They injected me with the nuclear stuff again, made me eat and drink and walk around for a while, then took more pictures. That test apparently came back fine, as well.
When I went for a follow-up with my doctor, he realized that he had meant to order a test on my blood work to check for blood clots, but either they hadn't done it or he had forgotten to request it, so he sent me back to the lab for poke number four.
Then he set me up with a chest CT scan with contrast. Now, THAT was one of the weirdest experiences I have ever had. I had to lie down and the machine would swirl around me, taking pictures of my chest. The tech had warned me that she would be giving me directions about holding my breath, etc. However, she didn't warn me that the MACHINE would be giving me these orders. When a mechanical male voice said to hold my breath and a little picture on the machine lit up, showing a cartoon face holding its breath, I about lost my breath in a fit of giggles. Then the machine tells you to let it out, hold it, breathe normally, etc. The tech pulled me out and injected me (poke number 5, making me feel more like a sponge than a human) with the contrast. She warned me that it would feel warm in the back of my throat and that I might smell something funny and might feel like I wet myself. Side effect of feeling incontinent? Oh, wow, this should be fun! I thought it would be a faint sensation, or maybe something that only some percentage of the population felt. Nope, immediately, my throat felt VERY warm as did my nether regions (ahem), my chest felt heavy and I felt light-headed. By far, one of the weirdest sensations I have ever felt. Then she asks me to stop breathing. I feel like I have an elephant on my chest! I'm thinking, "I don't think I could breathe if I wanted to," but I felt like panting. It seemed like an eternity before she told me to breathe again. Then it was over. After the weird sensations, I felt like I should be admitted to the hospital, but no, they turned me out. I felt used and abused. :(
So, that brings me to the sleep study. Sigh. My husband had one a few months ago and came home, insisting that was the worst experience of his life. I shook my head. If that is the worst experience he has ever had.... I wasn't necessarily jumping to participate in one myself, but it couldn't be all that bad. I don't sleep well in strange places. Even in a hotel room or a relative's house. Strange noises, strange surroundings, strange bed...I just have trouble. And, of course, they don't want you to take anything to help you sleep. But, I'm thinking that's the only way they will get me to sleep. Otherwise, you can sit and watch me toss and turn all night.
I wasn't exactly nervous about it, but I wasn't looking forward to it. My husband felt the need to warn me not to pick my nose or scratch my butt. Oh great, now I wonder what embarrassing things I do in my sleep! I know I sometimes talk in my sleep. What might I say???
So, I go in and the tech that is doing my study is very nice, but somewhat resembles a gay hippie. Maybe that's offensive to say, but my point is that, as he was helping me into bed, I'm thinking, "If I was going to have a man putting me to bed, he sure is not the type I would have picked!" Ha, ha! Just kidding, honey, if you are reading this!
My room looked like a hotel room. There was a bed, a desk, a wardrobe cabinet, side tables, and a recliner. I requested the recliner in case I had to get up with my acid reflux. I often sleep in my recliner. The tech had me fill out a bunch of papers and directed me to a bathroom next door to my room where I could change into my pajamas. When I was done, I sat in the recliner and read for a few minutes until he came back in.
He told me to come sit on the edge of the bed so he could fit me with the C-PAP. Whoa, wait a minute! I do not have a sleep apnea and no one said anything about wearing that thing! When I protested, he said it was just to try it, in case they had to wake me up in the middle of the night to wear it if I had enough "events". It felt very weird, but it was tolerable. It fit over my nose and I could breathe okay, but when I opened my mouth to speak, air rushed in my nose and out my mouth and distorted my voice. Then he sat me in a straight-backed chair and started wiring me up. I looked worse than the back of your TV! Fifteen electrodes on my head, three on my chin, one near each eye, something on my throat, two on my chest, four on my legs, something like a nasal cannula, a belt across my chest, a belt across my stomach, and a pulse-ox on my finger. And a wire attached to each of these. He first made red marks on my forehead and my scalp. Then he applied paste to each of the marks on my scalp. Yes, paste. Not like toothpaste, like the paste weird kids ate in kindergarten. Or Billy Madison. Just the flipping my hair back and forth (no, not channeling Willow Smith here) was enough to tangle my hair for the next 3.7 weeks, not counting the paste he was applying in fifteen different places. While he applied, he talked and asked me questions about myself. We talked about family and work and I cracked a few jokes about my ex-husband. I know, I know. But, weird situation + weird mood = weird things coming out of my mouth....
After I was sufficiently hooked up, he helped me into bed and told me that he would go fire up the computer and ask me to do some exercises. I heard a female voice over the intercom, asking me to blink, look up/right/left/down, flex my toes, cough, hum, fake snore and perform the pledge of allegiance. Not really on that last one, I just wanted to see if you were paying attention. Then he turned out the light.
I had asked if I could sleep on my stomach because that is my position of choice. He said they get the best readings on my back, but if I was just laying there awake for an hour, I should just make myself comfortable. I always sleep with a fan going because the white noise helps me sleep, so I had started my white noise app on my phone. The plug-in I plugged my charger into was too far away to pull it close to me and I was so encumbered with wires, I couldn't lean close to it. I was squinting at the screen because he had taken my glasses. Go ahead and picture it: me leaning off the bed with wires attached to my head, like a dog on a chain, my cell phone in my hand, cord stretched as tight as it would go, and me squinting at the screen to try to read which setting to put it on. Okay, stop laughing. It's really not funny. I was finally able to choose a heavy rain setting. I laid there listening to the "rain" and hearing repeating patterns and tones in the sound. Or maybe I'm just nuts. Well, that's a given...
So, I'm laying there and the weirdest thoughts started going through my head. I start wondering what they can pick up with the scalp electrodes. Can they read my thoughts? Can they see what I am dreaming? I'm sure they can't, but it still makes you wonder. Maybe I should have thought of something interesting, like repeating the entire script of The Phantom of the Opera. Or that my cat told me to put a lampshade on my head and hack them all to pieces with my nail file. Or rehearsing lines from Silence of the Lambs, such as, "I ate his liver with some fava beans and a nice Chianti." Perhaps I could pretend I was channeling a Japanese radio station. Wait, I don't speak Japanese. I could practice my English accent, guv'nor. I could really make them wonder.... Even if they couldn't actually read my thoughts, surely different parts of my brain light up when I think different things. I can just imagine them sitting there, saying, "Well, we know she's not doing complex equations...that part of her brain is flabby and full of cobwebs." Maybe I should have tried subliminal messages to my captors--I mean, techs: "You will go and get me a snack from the Cheesecake Factory. Something chocolatey. Go now and return quickly." My usual thoughts when I have trouble sleeping is planning how to spend my millions if I ever won the lottery. But, then I started wondering if they were sitting there, hoping I would channel winning lotto numbers so they could run out and win my lottery millions! The nerve! Or, maybe I wouldn't really wake up in the morning. Maybe this was like the Matrix. Maybe they were sucking my brain. Well, at least it wouldn't take long. If it was like Vanilla Sky, I hoped my "lucid dream" included the lottery winning and not just an unending loop of my lying in this bed, hooked to wires. That would really suck.
I tried to go to sleep on my back, but it never happens. It was early for me to go to sleep, but I had stayed up until 3:30 am the night before, hoping that would help me sleep. I was starting to get tired, but the more tired I am, the more my restless leg syndrome acts up. So, I'm laying there, flip-flopping like a fish out of water. I should have been on an exercise bike, then my pedaling would have accomplished something. Plus, my feet were cold, so I was trying to get them warmed up. And all this while I feel like I am tethered down by my head. NOT conducive to movement. After what felt like an hour or more, I pushed the call button on the intercom. When the tech came in, I told him I needed to go to the bathroom and needed another blanket. I went to the bathroom before I went to bed, but my kidneys were in pain. I looked in the mirror while I was in there, which was a mistake. I looked like a Medusa zombie on life support. Or as if I'd escaped the electric chair. I had to chuckle because earlier in the evening, my friend Rachel had been joking about being the one in charge of my sleep study. That thought was horrifying, thinking about her posting pictures on Facebook. The view in the mirror confirmed that pictures would be enough to drive me into hiding for the rest of my life. I'd be a hermit in the mountains. Maybe I could let my leg hair grow out and freak out people searching for Bigfoot. But, I digress. When I crawled back into bed, the warmth of the extra blanket instantly calmed my legs. I was still restless, but not nearly as bad.
I eventually decided that me sleeping on my back was just not going to happen, so I gingerly rolled to my right side. The rest of the night was spent, flipping from right to left to right to stomach. I felt like I mostly just dozed. Turning over required such care, due to the many wires, that instead of just doing it in my sleep, I was fully waking to move. I move frequently because of neck and back pain and because too much time on one side makes that hip hurt. At one point, the tech's voice came over the intercom, asking me to roll onto my back. I groaned inwardly, but complied. After about 20 minutes, he told me I could roll to whichever way was comfortable. I said "thank you" and rolled to my right side.
A couple of times, I felt the urge to pass gas. However, I didn't want to do that when I was being monitored. Although, as hooked up as I was, they probably not only knew I had the desire to toot, but also knew what I'd eaten for dinner and what color it would be when it came out! Maybe I should have just let it rip, to shock them thoroughly. I wonder if I farted in my sleep! Ack!
I must have slept at some point, though it really didn't feel like it. But, at one point when I rolled over, I saw light around the window shades, so I knew it was about over. Pretty soon, the tech came in to wake me up. It was 6:15am. I should have taken a picture because it's been a long time since I've seen the 6am hour! And will probably be a long time before I see it again! He took my blood pressure and then had me do more of the exercises that I had done the night before. Then he proceeded to unhook me. I said I assumed I must not have stopped breathing or had too much snoring since they didn't come in in the middle to make me wear the C-PAP. He said that I had had a few "events" but not enough to meet their criteria. I asked for an explanation. He said the best way to describe it was that I had a few partial obstruction events, but no complete obstructions. Hmmmm... That helps clear it up. Does that mean I had a big booger blocking part of my nasal passage? Or maybe my uvula (what a weird word, have you noticed?) swells in my sleep? Does my acid reflux sneak up my esophagus while I am asleep and sit like a pond in my throat? Or maybe my dreams were so scary/exciting that my breathing became shallow? You're nice, dude, but not a fount of information. And I have a hard time being especially friendly with someone who watched me sleep and I suspect may have made fun of me. Guess my doctor will have to translate for me when I see him next.
I went to the bathroom, planning to shower, but I found no towels and had forgotten to bring a hairbrush. So, I started trying to wipe some of the paste out of my hair and gather it into a ponytail. I was thinking that maybe I should have asked for more of the paste to try to work out some foot-long spikes. Hey, making lemonade out of lemons, here. I was sure the techs were in there laughing about the state my hair would be in, joking at how I would likely be forced into a Sinead O'Connor 'do for the next few months. Jerks. I got dressed, gathered my stuff, and left.
My husband had wanted me to stop and get him some McDonald's on the way home, so I went through the drive through. When I got home and looked in the mirror again, I had to laugh, thinking about what the McDonald's employees must have thought. I still had paste in my hair, red X's on my forehead, and deep creases across each cheek from the cannula. I told myself that they probably thought the crease was a scar and since I was shaded in the car, they probably didn't see the paste or the red X's. Yeah, I'm sure they didn't think anything weird. Sure. That's what I'm telling myself. I'm sure they see worse. Maybe that's why the guy was confused about which drink was Dr. Pepper and which was Coke. He had it straight as he was opening the window to hand them to me, but at the sight that met him, his mind went blank. He stammered, "I think this one is Dr. Pepper." Nope, he was wrong. I thought he was just inept, but in retrospect, he may have been frightened out of his wits. I have that effect on people. Apparently red X's on my skin intensifies it.
So, I went home and took a shower. I shampooed my hair three times before I felt like all of the paste was gone and I wasn't even sure then! Then I laid down and slept for six hours. See, if you want an accurate sleep study, you need to have wireless monitors and do it in-home. Sleep in a facility, hooked up to wires is not indicative of my normal sleep patterns.
Dr. Robin has her own theories. I believe my sleep problems are threefold. First, acid reflux wakes me up at night. Interrupted sleep = weary and tired. Second, back/neck/shoulder/hip pain. I have to rouse somewhat to change position when the pain becomes too great, therefore I am not getting deep, quality sleep. Interrupted sleep = weary and tired. Third, restless leg syndrome keeps me awake longer and makes it more difficult to fall asleep. Delayed sleep = weary and tired. All these things together = weary and tired.
I did a little research and found that the RLS drugs (also used to treat Parkinson's) are now available in generic form. I tried them years ago and decided the out-of-pocket cost was too great and I could just live with RLS. But now that they are available in generic, I will be discussing that with my doctor.
My next medical adventure will be wearing a halter monitor. The cardiovascular department was supposed to call me, but since they haven't, I guess I will have to make first contact. I am at the point where I am beginning to think that my symptoms may be anxiety attacks. My doctor said if that is the case, I need to go visit a shrink. Sheesh. I've had enough counselling and psychiatrists in my lifetime to staff a suicide hotline. I really don't want to do it again. But, I guess I will suck it up and do it. If for no other reason than to set a good example for my kids, since they hate going to their counselling. My doctor acknowledged that, yes, I have done counselling many times before, but pointed out that if your hand is stuck in the toaster, you can't really treat the burn until you pull your hand out of the toaster. So, now that I am out of the proverbial "toaster" in my life, now I should seek treatment for the "burn." Okay, okay. I get it. I'll go. But don't expect me to be happy about it!
By the way, if you couldn't tell, I THOROUGHLY recommend a sleep study. <snort>
I Have Moved!
3 years ago