Aug 18: It's always darkest just before.....damnit!

Sleep study:  oxygen not enough, was still dropping down into the 81-82% range with nasal oxygen on, so the tech came in and did the CPAP with it going through my nose because of my mouth being so dry with the Sjogren's.  I have been telling myself over and over since the positive results: 'Body, whatever is needed you will welcome and adjust to right away, because it's going to make you feel better.  CPAP will be wonderful for you.....'  I'm a big believer in mind over matter.

It feels weird.  I've heard it described by people as feeling like they were drowning; I think it's because you have to exhale against the force of the air coming in, and that requires more effort than your normal breathing, since your exhales are more passive than your inhales, and CPAP reverses that.  (CPAP = Continuous Positive Air Pressure)  The pulmonologist said the next day that I was struggling with it for the first hour or so, and then 'slept like a baby'.  The tech told me that I had three REM sleep cycles with my oxygen in the 90s.  Yeah!! 

While tired, not sleeping in my own bed and being woken up frequently, I was amazed that I felt much more alert the next day.  Could really tell the difference, even with only about three hours using the CPAP.  Couldn't believe that short a time could make such a noticeable improvement.  What will it be like with a full night?  And then two? And a week?  How exciting! Improvement in my physical health with no heart surgery involved!!

So now waiting for the equipment company.  Doctor told me it could be this weekend, but it wasn't.  It's so frustrating, because here's this carrot being held out with the promise of making me feel better and every day is one day more of feeling like absolute shit.  Making it worse is the tech admitted to me that she had missed  my oxygen levels going so low last time and that she should have put me on CPAP then, as protocol says to do that even during the first study if the levels go below 88% (reminder: mine were down to 77%), which means I could have been feeling better for the last SEVEN WEEKS.  So yes, chomping at the bit and pretty pissed that there has been this delay. Hoping maybe tomorrow? Tuesday?

In case it hasn't come across, being on the prednisone has totally screwed me up.  For the record: the prednisone itself is not the cause of the sleep problems.  The OSA/hypopnea (Obstructive Sleep Apnea) is something that has been happening, although I don't understand for how long and just how much is tied to my heart and lung issues.  The prednisone, however, is further overwhelming my body and mind's ability to cope with life.  I function on a level that has a very narrow ledge before I get into trouble, and this medicine, while necessary, has pushed me off the ledge.  The longer I'm on it the worse I feel, even with lower doses.  I feel truly horrible: exhausted, anxious, edgy, unable to focus, out of it, bloated, not myself, slow, tearing up and getting emotional at the drop of a hat.  I can't do anything but work, feel like I'm barely functioning, making a lot of mistakes.  I'm not me.  Having an almost constant ache around the left eye and my face, sometimes the left side of my face & head, is not helping.  The left eye started tearing today, then the lid and around it swelled up again, so I had to increase the dose again, which means today up to 15 mg again, and should probably take more since it's still aching as I type this.  I'm seeing the rheumatologist on Tuesday and will be begging for something else.

In the meantime I need some f#%king sleep, damnit!

Hoping that my next post will be after a night or two of gloriously oxygenated rest,   Laurie