Nice Went Out the Window

[Madalot]

I had gotten an email from my doctor when I got back from town (rare expedition for me) and the email basically reiterated that I probably do sleep on my back and just don't realize it. I about blew my top at that. I called her office and left a message for her to call me. She called back in about 30 minutes, which is impressive for her.

I let her have it. I mean, I let loose on her. I'm almost embarrassed at how irate I got...very uncharacteristic of me.

I have finally convinced her that I do not sleep on my back. Even though we had talked about it beforehand, HER reason for doing the study was to look for desaturations, even though I told her that I really wasn't desatting much anymore.

MY reason for the study was to figure out why I wake up so much, but more imporantly, why I feel so damned tired every afternoon and have to sleep. I told her that I am only 49 years old and this is ruining my life! I cannot have a satisfying life if I have to sleep every afternoon because SOMETHING is making me not feel as good as I should after sleeping.

I let her have it about the backup rate and how they were banging stuff around in the hallway after I went down. Because I was trying to not be a problem for the tech and be cooperative, I didn't complain about it and the result of that was "stay off your back and sew tennis balls into your nightgown" which is just stupid when I know I don't sleep on my back (yeah, I told her that in exactly that way).

I started yelling at her and said that nobody wants to tell me anything, but *I* am the one that knows how I feel and what is happening. I'm the one they SHOULD be telling. I even broke into tears during my tirade.

She seemed to hear it. So, assuming I stay off my back (which she now will concede that I do), my current ventilator settings are treating the breathing difficulties (both muscle weakness and OSA) adequately. She doesn't feel that the pressure is a contributing factor to the wakeups, but admits there may be times that it does happen.

The leg movements have caught her attention. She said there is a theory that people that have limb movements during REM sleep frequently don't feel as rested as they should. But she said not all doctors agree with that logic. She's willing and agreeable to look into it but she wants to discuss it with my neurologist first. I guess like everything with me, it's more complicated because of my neuromuscular disease. But she promised that she would contact him and get back to me.

No matter what, I've got her attention I think.

[Janknitz]

Good for you!!!!!!!!!!!!

Sometimes you have to hit these people over the head with a brick to get them to listen. Sounds like your brick was well-aimed and effective.

[Lori Dawn]

Whew!!! Maybe that helped you feel a little better, if not physically, emotionally and mentally?

I hope so and I continue to pray....

You go, GIRL!

Lori Dawn

[newhosehead]

I am standing and applauding! (No mean feat while you are typing, I might add)

Seriously, good for you. I know this is not your normal behavior mode, but I think it had to be done and the only other thing I can add is how often I have felt what a shame it is that we have to get this way to get someone's attention. I

[jbn3boys]

Great news, Maddie. I'm sorry you had to become so uncharacteristic, and that it even amounted to tears on your part, but I'm so glad that you finally got her to listen to you! I pray she talks to your neurologist SOON, and gets back to you as soon as possible with an idea of what can be done.

It just amazes me that will all you went through to get this last sleep study done, and with all the communication, and getting her orders so you would know what was expected, that HER idea and YOUR idea of the purpose of this sleep study were still so different. I think anyone here who has been following along knows what your NEED was with this study. It's a shame that the doctor didn't listen to you well enough to know that, too.

Hang in there, Maddie! We are all here for you!

jbn

Ps...thanks for the head's up in the last thread that you started a new one. I don't always get a chance to look at new posts, so I appreciated knowing this one was here.

[Breathe Jimbo]

Glad you got through to her.

[Kortez]

Congrats, Madalot. I'm glad you got through to your doctor. Keep sticking up for yourself, when you're not understood, as if you give in who will take up the fight for your needs and rights?

Best of luck to you!

[Breathe Jimbo]

Maybe ask her to look at the raw data again from the perspective of determining why you are waking up so often. She may be receptive at this time.

[archangle]

The answer to a lot of these problems can be a video camera. It's informative to record yourself at night occasionally and really see if you are snoring, back sleeping, sleepwalking, turning the machine off, being abducted by aliens, etc.

Some video cameras even have a "night shot" mode with infrared illumination. My old Sony consumer video camera has this.

I should probably do this to myself tonight. I haven't done it in quite a while.

[HoseCrusher]

YES!!!

There is nothing like a passionate and spirited discussion to bring focus to the problem.

[Slinky]

Well, your "losing it" w/her quite likely got her attention so it should come as no shock to her when you opt to continue on and go elsewhere. DO SO! Go someplace else. Get a fresh opinion and outlook on what is going on w/you. Pursue that research trial, see who/what facility they might recommend for sleep evaluation. MOVE ON, Maddie! Each time you've thought she got the message and obviously each time she's not quite gotten ALL of your "message". Move on to someone who CAN help you. Who works w/a facility that CAN and WILL think outta the box. Regardless how empathetic she might be she does NOT have the cooperation of a good facility to fall back on and she's not willing to work out of that "box".

[DreamOn]

The leg movements have caught her attention. She said there is a theory that people that have limb movements during REM sleep frequently don't feel as rested as they should.

It must feel good to know that your doctor heard you! Don't feel embarrassed that you expressed your anger. I'm sure that the doctor understands your frustration and what you're going through.

Somehow, I had missed that you have a lot of leg movements. Well, that could explain a lot! I don't even think it's "theory." I think it's fact that an excessive number of limb movements can disrupt sleep and cause frequent awakenings, resulting in not feeling well-rested during the day. I hope that this will be looked into further. I know that your sleep time was limited during your recent sleep study, but perhaps a clearer picture can be gained by closer examination of the data from all your sleep studies? There may be some unusual patterns that are evident if the charts are looked at closely.

I second the vote for videotaping your sleep at home. It could provide some very valuable clues as to what's really going on while you're sleeping. Here is a good thread entitled "Cheapest Way to Video Record Yourself Sleeping": viewtopic/t63371/viewtopic.php?f=1&t=52805. The webcam that Uncle_Bob referred to in that thread is a ClearMax PC Camera. The camera was less than $10. It doesn't have sound (which may be very helpful), but there are others that do.

[Madalot]

Many thanks to everyone for the support.

It's amazing how much calmer I am now after letting her have it. My husband is very proud of me for doing it.

When she said that she ordered the study checking for desaturations, I reminded her that I had told her I wasn't desatting much and that I told her what my issues are. When I spoke with the tech, I told HIM what my goals were -- to find out why I wake up and why I'm sleeping so much during the day. He KNEW that. That's when I blasted her about nobody talking to ME...and it just wasn't right.

But she's finally off the sleeping on my back thing, which is good. It's shame I had to scream at her to get her to hear what I've told her a half dozen times already...

But I DO feel better mentally, which is good.

[Cindy Lou Who]

Madalot,
I am soooo glad you yelled at your Dr. I almost had tears of joy reading your post. Three Cheers for you! Wishing you all success... you are definitely on a roll.
Cindy

[TalonNYC]

There is a great Bob & Tom bit called "Nothing gets someone's attention better than a good stream of profanity" - sometimes you have to get mad!

WTG, glad the doc is back on track to helping you with your actual issues.