Jen's Mental Scribblings

I describe my current weight situation as "I gained all my baby weight back and it brought a few more with it to keep it company."

I haven't been sleeping as well as I could be. I thought maybe it was teething baby. But when I'm sleeping 8 hours a night and still feeling like crap and taking 3 hour naps when I can manage it...something's not right. I know weight changes can affect the pressure needed on one's CPAP. I called Kaiser and set up an appt to get a smart CPAP to see if I needed a new pressure.

Last week I got the machine and 3 new masks to try out. (I'd been complaining of pressure leaks). I returned them and got the results this morning.
My machine was set at 11.5, now its set for 15. And after thinking about it, I've been sleeping less the last few days, but I haven't been feeling sleep deprived.

So not only do I have a new setting, I've got a new mask, and I've got to phone the pediatrician, they want to see Ike and the girls in the sleep clinic. The pediatrician needs to make the referral, but the sleep clinic wants to make sure that, even though Ike got his tonsils removed in December, they want to make sure he's still suffering sleep apnea. Why the girls? Well Gwen needs to have her tonsils out because I KNOW she stops breathing, but if they can fit her with a CPAP and can avoid surgery...I'm all for it. I don't want to have to go through what I did with Ike again.

I ordered a new face mask for my CPAP, clearly stated on the message what manufacturer and model I wanted...and the feebs still sent me THE WRONG MASK! ARRRRGGGGGGHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!

At least they got the right type of mask this time and the right size...but there's a big difference between ResMed and Respironics. Grrrr...Now I have 2 extra masks that I don't like. (Hrmmm...I have an extra nasal mask...have to see if Joe likes it...) But still. Grrr!

I ordered a new mask for my CPAP on November 7. I finally got the correct one today.

It should not be this damn difficult.

I'm anticipating a night of not having my mask slide off my face.

As soon as the kids who had a long nap go to bed...gonna be a long night.

I now understand why people keep their CPAP masks for YEARS. The loaner I had with the smart CPAP. Fit great. No problems with air leaks. The loaner mask I got with my permanent machine? I'm adjusting this stupid thing multiple times a night. If I strap it on tight enough to prevent air leaks, I end up with pressure marks on my nose, forehead, and chin. It also gives me a headache and I have a canker sore inside my mouth exactly where the edge of the mask hits my mouth. Hurts like hell. I've also discovered what the Dr. meant when she said that some people can have a problem with dryness. Its unpleasant. But I found that the nasal rinsing helps immensely, so I need to get back into the habit of doing that again.

I'm still having problems with constantly having one nostril closed all night long. I am amused that its the other side this week. I'll find out soon if they are going to just rotate on me or just clear up altogether.

I also got my permanent mask in the mail today. Its the wrong size. *face plant* I've called Kaiser to get the right one ordered.

I'm a bit tired today. Elli fell asleep at 6:40 last night and resisted being woken up so I just put her to bed. She woke up at 4:30, tired and cranky as hell and took 90 minutes or so to fall back asleep. I also ended up with a sneezing attack, so I took the mask off, shut the machine down, and slept without it.

I don't like sleeping without my CPAP. I actually have to work at breathing. This sucks! I want a clear nose so I can reap the full benefits of this thing.

And now for the Squee of the day. I just found out that Season 3 of the Muppet show got released...today! W00t! I am so looking for this at Costco.

Went back to full face mask.

Had 1-1.5 functioning nostrils when I went to bed.

I woke up a couple of times with a dry mouth, and fairly clogged nose. Turn machine off, blow nose, turn back on, go back to sleep.

The kids were really restless last night. Which is rough for Joe and bothersome for me.

I feel like the sleep was good, I just need lots more of it. I feel like I could go back to bed and sleep more.

I also feel like we need to do more training on getting kids to sleep on their own. Its not bad when they crawl into our bed and just sleep (which is what Ike and Gwen pretty much do) but waking up several times is just plain annoying. (But its not like Ike didn't take until 6 months ago to figure this out.)

Overall? Need more sleep.

Used the full face mask again. I only had .5-1 nostril fully functioning.

I slept fine from 11:30(?) to 5 this morning. That was the first time I had to wake up to blow my nose. Then I was up and down from 5 until I got up at 8. It wasn't the nose blowing that was causing a problem. The problem was that the machine kept ramping up the pressure. So I'd fall asleep, 20 minutes later the pressure increased to the point that the mask was literally blowing off my face and breaking seal. I'd have to blow my nose again, reposition, and tighten down the straps. Wash, rinse, repeat for 3 hours. At 8 my back hurt too much to sleep anymore.

So how do I feel? Tired. When I woke up at 5, I felt pretty good. But the three hours of constant adjustment wasn't very restful. My jaw hurts because I had to pull the straps so tight. And I have a headache due to the mask pressing into my face.

I think my sinuses are rebelling at being forced to function. I've had a constant runny nose since I woke up yesterday, that only cleared up after swimming for about 45 minutes. How is the CPAP supposed to get a true reading when its working against clogged sinuses?

Oy.

Well, I got my Smart CPAP today. I came home with the unit and 3 different masks to try sleeping with over the next week. I have a set of nasal pillows, a nasal mask, and a full face mask (All made by Res-Med). The question I have now is which one do I try first? The one I think I'll hate or the one I think I'll prefer. I HATE shoving things up my nose. So I'm thinking the pillows will just suck. Although I admit while getting fitted this afternoon I found that after the initial few minutes it wasn't that bad. I just had to remember to keep my mouth closed. Which might end up being a problem as I've never been able to breathe fully through my nose. It will be interesting to see how I feel in the morning.

One of the things I found interesting in my fitting today and the lecture I attended on tuesday was how they kept hammering at the recommendation to use a netti pot (or other nasal irrigation system) about an hour before bed. The supervising Doctor admitted that they don't like to use humidifiers. I wonder if they really think its avoidable or if they are just being cheap. I have a kit, and I bought it at the recommendation of my dietician over a year ago 'cause she felt it might work well enough to get me off allergy drugs (which contribute to my fatigue) I've never been able to get into habit of doing it. I know several people who just swear by it...but...um. Its kinda gross, and I don't like the way it runs out of my mouth. Bleh. But if it might help the CPAP work better. What the hell. I can give it a try.

So I have a follow up appointment next thursday where they download the info off the machine and then give me my permanent machine (and I've already looked up [Bad username or unknown identity: allanh*]'s 4 questions I need to ask regarding machines) and my permanent mask. My gram told me that if I end up not liking the machine, to call for an appointment and say that its too noisy and keeps Joe from sleeping. Good thing to know. Then I go back 2 months later for a follow up. I'll ask next week how often I can upgrade my stuff (i.e. masks, hoses, etc)


*Which BTW honey, what are those citrus wipes that you use on your mask? I figure I ought to know this.

NOT!

So, last month I went to my GP with a laundry list of issues I wanted to talk to her about. One was that I wanted a sleep study. Almost exactly 20 years (and okay I'll admit 60 pounds ago) I was diagnosed with Obstructive Sleep Apnea. I started snoring...loudly, when I was 2. By the time I was 15, my level of sleep deprivation was so bad I'd become narcoleptic. What finally prompted my mother to do something about it, after being reassured by our Dr that everything was fine for years, was the fact that all my teachers called my mother within a week to say that I was falling asleep in their class. Every day. Mom took me to a classmates dad who was an ENT, he took one look in my throat and said "Those are coming right out. How's next week?" He said that my unusually large tonsils and adnoids were causing sleep apena...their removal would fix the problem. After the surgery he told my mom that, not only did I stop the room when I was put to sleep, but I also had the largest T&A he had ever handled.  He had no idea how I'd been able to sleep.

But I digress.

So lately, (read last couple of years) I have been feeling like I did then. I would wake up after 9+ hours of sleep and want to take a nap after a couple of hours...and would take a 3-4 hour nap if circumstances would let me.  And I felt like that I wasn't getting rested. So I asked my Dr for a sleep study. She immediately agreed and I got an appt several weeks later. Which was last week. I went to this stupid Kaiser class where I learned how to put on this wierd arm brace that had two finger thingee's on it. One to measure my oxygen levels and one to track my pulse, plus a computer to record the nights readings.

I got a letter today.

Guess what?

I have sleep apnea! (No shit!) *rolls eyes* 21 episodes per hour according to the results.

So I called to make the first of 3 appts. The first is a class to learn what sleep apnea is, and what causes it. #2 is to be set up with a smart CPAP for a week. #3 is to meet with the Doc and get my Rx and discuss further proceedures. I asked the receptionist if I could skip the class as I was diagnosed 20 years ago, I know all about it. I even had surgery for it. "Why did we do a sleep study if you already knew you have it"
"Because they didn't do sleep studies or CPAP's on 15 year olds back then. They just ripped your tonsils out and sent you home"
"That's a good reason."
"I thought so"

So now I get to join the cool kids and get a CPAP. =) Whee!