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.

Free glasses, eye surgery and stuff

It's -1 F in my part of the world right now, and I don't approve.  Not that anyone asked, but there's my opinion.  When its above 68 I don't approve either. 

I had the most amazing day today!  My self help aide took me to the PO where I picked up a book I ordered for her for Christmas and I just tucked it into my messenger bag. 

Then we went to my pharmacy and I picked up a prescription and was delighted to see that my insurance paid the pharmacy 166.68 for the 30 day supply.  They only pay $4 on a 90 day supply which costs him 594.  I get all my drugs 90 days at a time, but the pharmacist called and asked if I would please consider getting it only 30 days at a time.  He said my insurance company reimburses him a reasonable amount when he fills for 30 days, but virtually nothing at 60 and 90.  I wasn't happy about it; his pharmacy is 28 miles from my house.  But  I like him and I've done business with him for a long time so I said yes. 

Then we went to the eye clinic in town and stopped in the optometrist's area first to get my glasses adjusted again. 

And then we went upstairs to the surgery center.  There, my ophthalmologist used a laser gun to put about 100 holes in each of my eyes.  This is the second time we've done this, and it worked very well the first time.  We do it to lower the pressure in my eyes.  It's never been real clear whether I have glaucoma or just high eye pressure, but the diagnosis has been glaucoma since I was 19.  And my eyes don't respond very well to drops, so we have trouble keeping my pressure down.  Laser surgery does the job, though. 

I reassured a man in the waiting room who had not yet gone in that there is no pain involved in the surgery.  The doctor utterly goos up your eye and then puts a magnifying lens on it and finds her places to make the holes. 

Laser surgery apparently has many applications in vision care.  In macular degeneration, the wet kind, laser surgery destroys the veins causing damage to the retina.  The only drawback to that surgery is that it has to be done rather often to keep the new growths gone. 

Laser surgery is also used in  Lasik of course, but I don't know of many people who can afford it.  I think insurance companies should pay for it if it's going to eliminate  the need for glasses.  But of course medical insurance would pay for the surgery and vision would pay for the glasses, so they probably don't work together that way. 

When I was employed, I had VSP insurance to help pay for my glasses.  Since they cost about $700 each time, it's very nice to have insurance.  And I recently learned that I could get it for a very decent monthly payment (less than $15) so I enrolled again.  I will have a small copay for lenses next time and nothing else.  I think it's about $30 and when you compare that to $700, it's just not a bad thing at all. You might want to research them if you wear glasses.  I believe it's relatively recently that they've begun accepting private subscribers instead of just accepting businesses. 

And the other place to check out is Coastal.com.  Every now and again they do a promotion allowing one pair of free glasses per individual.  They call it your "first" pair of glasses with them, but of course you don't have to go back and buy more from them.  I paid 13.31 for my glasses, and that was just shipping.  If you have a pair of glasses that fit, they probably have 3 tiny numbers on the inside of one temple.  Find those and enter them on the site; that gets you immediately to frames with the same measurements across your nose, in the temples, and between your eye and lens.  So that's one set of numbers.  The next is your prescription.  I just got my pair for reading glasses, so the prescription was pretty simple.  And the offer is limited to single vision glasses, by the way.  If you need new glasses or if you want to reduce the cost of your next pair of glasses, coastal.com's offer just can't be beat.

Personal Responsibility

Today's little chat is about personal responsibility.  It seems to be almost entirely absent from at least the part of the world I'm dealing with.

Example: A nurse fills my pill box.  I notice days later that a pill isn't in the box.  I am puzzled.  I check.  I have a full bottle.  So the next time she comes back, I point out that this pill was not in the pill boxes last time and I wonder why.  She immediately tells me that it wasn't in the box because I told her I'm not taking it anymore.  This is a lie.  It also, she believes, relieves her of blame in the matter.  No personal responsibility.

Example:  Woman interviews with me, agrees that working for me would be great, and yes, she will drive me to town on Monday.  (I should not drive; I have this peculiar tendency to suddenly wake up, which tells me that I was sleeping but I didn't know I was falling asleep.)  On Sunday she calls me and tells me her husband doesn't want her to drive so far, to my house and back, once a week.  This clearly is a lie.  She's changed her mind or she only applied for the job because she's on unemployment and has to apply for 3 a week to keep it.  No personal responsibility.

Today I went to Wal-Mart.  I asked for earring backs that were made by either White Stag or Roman Research, because both contain no nickel.  Nickel is what makes people allergic to jewelry.  So the clerk said yes, there are two different packages over there, both silver, one the clasp back and one the barrel back.  I said but no gold?  She said no, we have silver; why would you need gold?  I said to match gold earrings.  She said that doesn't matter.  You can use silver.  So I just went to get the nickel-free earring backs without telling this opinionated female that I don't have to use just silver; I can want gold, too.  Well, what I found was that neither package of earring backs were made by either White Stag or Roman Research and neither said they were useable for people allergic to nickel.  I took them back to the desk and pointed out to the clerk that neither of the packages was made by either White Stag or Roman Research.  She said without a blink, I didn't say they were.  For the longest time, I stood there, considering pointing out to her that when I ask if you have earring backs made by White Stag or Roman Research, and you say yes, there are two different packages over there, you ARE saying that you have them, but I decided that she already knew that, and there was no point in it.  So I put the earring backs back on the rack and went my merry way.  I will order them on-line.  No personal responsibility.

Personal responsibility isn't easy to acquire or maintain, but with practice, it gets easier.  It is a personality trait, but it isn't genetic.  So we can learn it.  It requires deciding to be personally responsible and then reminding ourselves each time a situation comes up, I must accept my responsibility in this matter.  The first time you have to say, you're right and I was wrong, is really hard!  But with some practice, it gets easier.  The second time isn't as easy as the fifth is. 

And so there is an interesting side-effect of trying to develop this honor in ourselves, and that is that we become much more careful about what we say and do, realizing that if we act honorably, speak truthfully, and do our best to avoid having to apologize, it doesn't have to get easy to accept that we made a mistake and we need to make it right.

But it is a thing I think we should be teaching in school.  I think if everyone took responsibility for their own behavior, admitted their mistakes, and apologized for causing confusion or problems, it would be a much better world.

Paperbackwap.com

Paperbackswap.com is today's happy topic.  Despite the name, you don't have to just swap paperbacks.  And you get two free credits after you post your first ten books. You can swap hardcovers and audiobooks on CD or cassette there.  They have sister sites for music CDs and for DVDs.

I joined PBS in March of 2008 and I've done some serious swapping there!  As of today, I have mailed 627 books and received 1192. I have no books posted because I can't afford the postage right now to ship them.

When you request a regular book from someone it costs you 1 PBS credit and the sender pays the postage.  You get PBS credits by sending your own books out, 1 for paper books and 2 for audiobooks, and you can buy up to 30 credits a month from the site, and right now they cost 3.95 each for the first two credits you buy, and 3.79 each for others in the same purchase.

There are discussion boards on the site, and one of them is called the Book Bazaar.  You can go there and always find people selling credits for less.  I've done that from time to time and I've never once got hosed.

My books were mostly destroyed in a storage space in 2007 so I was replacing them slowly when I found out about PBS.  They are all replaced now, and I'm still requesting books!

I mentioned that they have sister sites.  swapadvd.com is their movie site.  And credits are worth more there, so if you swap on the dvd side, and transfer your dvd credits to paperbackswap, your pair of dvd swap credits get you two credits on paperback swap.  You can only swap DVDs here, but they have a forum and I managed to unload a great many VHS tapes there.  I just posted a list in alphabetical order, and I think I asked 1 dvd swap credit for 5 VHS tapes.  They went like wildfire, to my surprise, and I had more credits to send to paperback swap.

I used some of my dvd swap credits on the dvd site, and that's why I can post in my Joy of Living post about how many DVDs I have!  And in that same post, paperback swap is mostly responsible for my huge quantity of books and audiobooks.

I haven't said much about the cd swap site because I'm tone deaf so music doesn't mean much to me, except for the lyrics.  I belonged there long enough to unload a lot of music CDs I didn't want.  And then I transferred my credits there to paperback swap so I could continue restoring my library.  I don't remember how many credits you get on paperback swap if you transfer CD swap credits, and I do seem to recall that there's a tiny fee per CD requested, like maybe a quarter.

If you have books, audiobooks, movies or music to unload, these three sites will almost certainly work for you. 

Joy of Living

I have so much to be happy about and I truly think that we all do.  So let me just list what I have to be happy about, and as you read, compare.  How much of my joy could you actually feel in your life?

A healthy child;
A close family (though not my birth family)
A good education (BA)
My own home (inherited)
Books galore
Audio books galore
DVD movies galore
New furnace
New plumbing
Water
Electricity    
Friends
Doctors
Nurses
Physician Assistants
Self help assistant
The sun in the sky
The wind (and breezes)
The moon
And anything else!

Those are mine.  Surely you can think of more, and agree with many of the same.    

Peace Reigns Again

Tuesday I called a driver and we went to the polls where I registered to vote. I hadn't voted in a long time, but this time, I felt I had to.  I am disabled and I receive Social Security disability.  I am on Medicare and Medicaid and extra help as well.  The Medicaid side pays for self help assistants to do the housework, cooking, and shopping that I can't do myself anymore.  Medicare is first payer on my medical costs and Medicaid picks up the difference in co-pays and premiums.

I am a female.  I am 56.  I live in a rural state in a remote location.  I have no family but for a son in Seattle who I would never ask to come back home and take care of me; he's 33 and his life is right where it should be. 

I get by happily enough.  I can live on the checks I get monthly because that check is based on my work history; on the wages I made, and I was well-paid for my skills.  I keep my spending down, of course.  I pay attention to prices and bargains.

And I saw all that about to come crumbling down around my ears.  The Republicans were talking about turning Medicare in a voucher system and turning most of the cost of medical care to the patient. They talked about abolishing Medicaid.  They talked about closing businesses that cater to the special needs of women.  They talked about impacting my world so severely that I could only hope to live a time in my car before I died.  Without Medicare, I cannot take 30 pills a day. Without Medicaid, I cannot get the help I need in my home and so at best I might hope to be warehoused in a nursing home, but without Medicare and Medicaid, how would I pay for those?

I voted this year for the first time in a long time because I wanted at least to be able to console myself with the knowledge that I had done what I could.  I voted for Mr. Obama and Mr. Biden, and they won, and I went to bed on Tuesday night in a state of lightness of being that I have not felt in a good long time.

Mr. Obama is not perfect, but at least I don't feel like he's gunning for me.

Congratulations, Mr. Obama!  Well done, Sir!

Swagbucks!

OK, this is not rocket science.  It's very simple.  You join Swagbucks and you do stuff and they give you bucks.  Swagbucks.  And then you can do things with those bucks.  What kind of things?  You can enter swagstakes which are sweepstakes and try to win very cool stuff, or you can donate some to charities, or you can get stuff in the swagstore!  Stuff like gift cards.

I like the Amazon ones.  Because I want to buy a Kindle, I'm buying Amazon gift cards with my swagbucks, and applying them to my Amazon account, and of course they are going to reduce the price of my new Kindle.  That is just not a bad thing.

If you don't belong to swagbucks, you should!  You can watch their TV things, which are very short, and get swagbucks.  You can print coupons and you get swagbucks when you use them in your store.  You can shop in places and if you start your shopping from the Shop and Earn place on swagbucks, you get swagbucks for shopping in the places you shop anyway!  Now how can that be bad?  Hmm?

And you can take surveys and make big swag bucks, but I can't.  Nope.  I'm a white middle-aged low income retired disabled female in Wyoming who lives alone.  I don't qualify for very many surveys, I'll tell ya!  But I keep trying, because they pay good swagbucks for surveys.

But you see, right?  There's just nothing wrong with it. You watch TV and get paid.  You search the internet and get paid.  You take a survey and get paid.  You shop where you normally shop on-line, but now you get paid for it.  You use coupons on stuff you normally buy, and you get paid for it.

Then you go to the swagbucks store and you buy a gift card and you use it at your favorite store, and chances are, you can use that shop and earn feature and get more swagbucks for using the gift card you got with swagbucks for shopping where you want to shop.

It's just a dang win win.  No matter how ya look at it, it's a good deal!