Tonight's picture was taken in August of 2005. Mattie was in Los Angeles visiting my parents. I snapped this photo of Mattie playing one morning in the kitchen. He literally put one of the boxes to his toy cars on his head, wore it like a hat, and decided to prance around like this. I think he was acting like a train conductor and he felt he needed an official cap.
Visiting Los Angeles with Mattie was always a hoot for the first couple of days. Mainly because he was on East coast time and that three hour difference really affected him. At 4am, he would be wide awake and ready to start his day and play. Peter and I on the other hand were wiped out.
Quote of the day: I am certain of nothing but the holiness of the heart's affections, and the truth of imagination. ~ John Keats
I had the opportunity today to connect with a friend of mine who was also asked to consult with a sleep doctor. Like me she too felt she didn't have a sleeping disorder, but after testing was diagnosed with one. The irony is she and I are seeing the same sleep practice. I can't say that all sleep doctor visits are like this, but as we were putting our two heads together, I have come to the following conclusion. This practice seems very focused on diagnosing apnea. In fact, even in my first appointment before getting any actual data on me, the doctor walked me through the mechanics of apnea, with photos. Then he showed me sleep apnea machines. I made a note of this because to me this was putting the cart before the horse. In my opinion I was going to consult with him to rule out a sleep disorder, and in his mind he was sure I already had one. Frankly I would love to do an unofficial survey of patients who walk through their doors, because my hunch is a majority of them are diagnosed with apnea.
This sleep practice also requires that you log onto their electronic system within 24 hours of being seen so you can communicate with your doctor. So I complied and when I logged in I could see the doctor's notes from my visit. In the notes it basically said that I reported apnea symptoms, which isn't true. There are many reasons why someone doesn't sleep well and wakes up tired, it doesn't have to be apnea to explain this. So I have been confronting this discrepancy in emails since I read the notes and stated my disappointment in their conclusions. In my opinion the doctor has judged me before I ever took a sleep study, which I am supposed to do in a week or so.
When I met with the doctor last week, he told me that people with apnea tend to be overweight, middle aged men, with enlarged tonsils, frequent alcohol use, have necks larger than 16 inches, and are smokers. I don't meet any of these criteria, nor do I snore or has anyone ever noticed that I stop breathing when I sleep. Yet after expressing all of this he then says that not every one with a sleep disorder meets this profile and because I have a small throat and am a chronic migraine sufferer, who potentially has fibromyalgia, this correlates highly with sleep disorders. So here is the bottom line with this group..... you can be overweight, normal weight, skinny, small neck, large neck, etc... and still be diagnosed with a sleep disorder.
What this proves to me ONCE again is that you have to be your own doctor and direct your own care because if not, certain doctors will railroad you. This practice strikes me as "the my way or the highway" kind of approach, which is why I am surprised that my internist even recommended this practice. It is unfortunate what this doctor's office has made me, and probably countless other patients, endure. Because it is very scary to think that this doctor knows my own sleeping patterns better than me, but worse wasn't really taking into account all I was telling him. To me there are many explanations for physical symptoms and one just can't jump to conclusions using a myopic lens. I love Peter's line..... when you are a hammer the world is your nail. This statement applies beautifully to the experience I am having with this medical practice.
1 comment:
Vicki,
I love the picture of Mattie with the box on his head. A child's imagination is so precious. It is obvious from pictures, that Mattie had a great one!!!
I like Peter's comment about the nail & hammer - SO TRUE!!!! But so awful that in this case it was about a medical problem.. It is certainly true that this Dr. saw you as a sleep apnea patient when in fact you were there to consult to see if this one of the ways fibromyalgia is affecting you. Not all patients with fibromyalgia have sleep apnea. But today many people are diagnosed, using CPAP machines, making me wonder if this is the new catch all way to fix some issues. When you can't find out the why of symptoms, say sleep apnea.
I am sure your rheumatologist was shocked by this treatment.
I shared with you Ken's story. He does indeed have it. He has none of those descriptors, you shared. But he does snore, stop breathing, then start up again louder than ever. He also has AFIB. He, like you questioned the Dr. at length but it was not assumed he had sleep apnea until two tests confirmed, he did. Ken had such a different experience with a sleep Dr. But your blogs points out how common this is becoming which to me is a red flag!!!!!
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