What's new with me and you

I do get kinda sporadic about posting, don't I.  Oh, I know, but this thing called central sleep apnea is controlling my life along with multiple sclerosis fatigue. 

 

Central sleep apnea means that when I go to sleep, my brain frolics.  It decides (37 times each hour) to turn off my breathing.  This is rude.  What is even more rude is that the lack of breathing wakes me somewhat.  Not all the way, but enough that if I was actually getting some real REM sleep, the kind that rests you, I come out of it.  So you can see the cycle.  I start to drift into the sleep we all need to rest and revive us and I stop breathing so I come out of that sleep.  And the result is that I am always exhausted.  I can and do fall asleep without warning and for example, if I'm sitting at my desk, I fall out of my chair and you can imagine what the average sized adult body does when it hits the floor.  Yes, it gets hurt.  I get hurt a lot.  My left shoulder is a state of constant bruise from my falls.

 

My right shoulder is going to be operated on December 18th to fix what was damaged in it some time ago.  I have this deal with my subconscious.  On the scale of 1 to 10 for pain ratings, my subconscious is under orders to just shut up about anything less than 5.  If it didn't, I would be obsessing about pain and that's just no fun, for me or anyone involved with me.  So that shoulder got whacked a while ago and it had to start shrieking above 5 to get my attention.

 

I suspect my left will be operated on again. I had surgery on that one in 2010. I had come out of a storage house on my property and realized that I didn't hear the door snap shut behind me, so I turned back on the porch to close it, but my legs, living in braces, don't have a real quick contact with my brain all the time.  And so I fell against the steel door and drove my elbow between two ribs and tore the muscle there, and simply smashed my left shoulder against that door.  If you've ever torn a rib muscle you probably know that for at least 3 weeks after this incident, I had no idea I'd injured my shoulder because my rib cage was simply howling with outrage!

 

I had that surgery and made myself a legend in the surgeon's office.  Six weeks after surgery I was back to 100% range of motion in all directions with that shoulder.  There's a reason for that.  Multiple Sclerosis strives to make me dependent.  It takes my strength and balance.  It has weakened my legs to the extent that I should not ever be walking without braces and my left arm to the point that the thing it does best is drop what I ask it to carry.  So when there is a chance that I can snatch back some small speck of my independence, I will do it!  I will go to any lengths to get some measure of freedom back in my hands.  Hence, six weeks to 100% ROM.

 

Back to MS fatigue.  That hit in November of 2008 and when my company downsized me right out of a job in February of 2009, I was not entirely upset.  That's because I would not have been able to hide the fatigue from them much longer, and they would have fired me for poor performance.  It's much better for the ego, to be downsized out than it is to be fired for not doing your job.

 

My application for disability moved incredibly fast.  I filled it out on the internet and about a week later, got a notice of a face to face appointment with a SS rep.  She told me at that meeting that MS fatigue is not a compassionate allowance but it does hit the fast track.  That's because it never gets better and by the time we apply, we are unemployable.  I applied in August of 2009.  In September, I met with her.  In October, I met with the SSA's doctor.  In December I was on-line and saw a pair of pants I really wanted.  They were $60.  I went to my checking account to see if I could afford those pants and there was about $6,000 in my account.  I was astonished.  I scrolled up.  It said SS Disability.  The next day I got a "reminder" to PLEASE get my user name and password set up on the SS site!  I was surprised.  

 

I took the letter and a print out of my checking account statement to the local SS office and asked them if those two things meant my application had been approved. The worker told me that they do not; the only thing that tells me I've been approved is the approval letter.  She got on her computer.  She muttered and she smacked her computer and she finally said, "The request that you please remember that you've been asked to set up your information on the site comes from us.  Your approval letter, with the first request that you set up that information, comes from Washington.  Your approval letter has been sent, but our reminder letter got there first.  So yes, you have been approved for SS Disability but not for SSI because your disability payment is too high to justify SSI supplements."

 

I wished her a lovely day and went home, baffled.  It took four months.  I had heard about multiple applications being denied, hearings being held, denials being upheld, appeals being heard, denials being sent back to the SSA for review, etc. etc.  Four months.  So I will not join the tirades against SSA.

 

What does MS fatigue do?  Well, I can sleep 20 hours a day for half or more of each month. Those days don't come in one predictable chunk.  I may sleep 20 hours a day for three days and then sleep 8 or 10, and then 20 for a week, and then 8 to 10, but it works out to about half the month.

 

People hear this and say, oh, what I wouldn't give to sleep like that!  No, you would not!  I am 56 and sleeping my life away.  I would happily trade my life for yours.  Give me your job, your sense of being useful, your sense of purpose, and your freedom to earn as much as you want, and you can have my fatigue.

 

And what's new other than upcoming surgery?  Well, let's see. I won't use his name, but let me tell you about a prima donna.  I called a doctor at the beginning of December when I got my surgery date, and asked for a pre-surgery exam and consult.  I was told if I wanted an appointment with him, I should have called in October.  I pointed out that I don't think anyone gets two months' notice of surgery and it is typical for doctors to make allowances in their schedules for just this type of exam.

 

She told me that he doesn't make allowances and so what I needed to do was cancel the surgery and make an appointment with him in February and then he would see me in the pre-op exam and consultation mode and then surgery could be scheduled. I pointed out that the hospital, the anesthesiologist, a home health agency, my self help assistant and numerous other players in this situation would all have to be canceled to accommodate this single doctor, and that the pain level would simply be mounting during those two months, and everything damaged in there would be getting more damaged. She said that was irrelevant.  If I wanted him involved, I would cancel now and reschedule when he told me to.

 

I had called my GP and talked to her practice manager and said that I had surgery scheduled for the 18th and she said, can you come in at 10 on the 6th?  Easy, yes?  So I went in to see my GP and unlike me, I went ballistic about the prima donna.  She asked exactly what his role would be in the surgery and I explained that he needed to tell the anesthesiologist the particulars of my central sleep apnea.  She nodded and pulled out the paperwork pertaining to that.  She made some notes from it, looked up, smiled, and said, "I'll just include that in my history and physical so they'll have all they need right at hand."

 

I guess there are doctors who respect their patients, and then there are doctors who don't.  And the one who wants two months of advance notice and who expects that I will simply shut down all the processes already in place regarding surgery, will not be my doctor in the future.  If there is no alternative close at hand, my self help assistant is certainly capable of driving longer distances.

 

And on that note, I'm off to write an open letter to Stephen King.  I wish you all the nicest of holidays this year, no matter which ones you celebrate.