Happy Holidays

No matter what or who you worship, no matter if you do not worship, (but my liberal leanings do draw the line at Satanists) I wish you the happiest of days. 

If your family gathers at this time of the year, I wish you no wars with siblings. 

If your household is cooking this year, I hope the visitors will wash up afterward.

 If there's a ball game on and dishes to be done, I hope with all my heart that it's not just the women in the kitchen nor the men in the living room but a bit more a gender mix. 

And if there must be alcohol, I do sincerely hope for the sanity of the women, that the men do not bawl from the living room, Hey!  Bring me a beer! but rather stand, walk to the kitchen, and get their own.

I wish you the joy of the new year, faced with fortitude, work ethic, faith in human resilience and a commitment  to do and be our best this year.  I hope that each and every one of us faces this new year, and each other, with hearts true and strong in acceptance of one another and in a new resolve to respect a bit more those who are different from us.  Whether their difference is marked in skin color, native language, faith, lack of faith, disdain for faith, disability, disadvantage or loss of all hope, I do so hope that we as a nation more diverse in its population than any other nation in the world, will come at last to a true respect.

What?  No bashing on boards?  No all caps accusations of mental inadequacy pointed at that blithering fool who has the temerity to disagree with you?  No bashing, period?  No hate?  Just simple acceptance?

YES!  That is what I hope will somehow magically occur on January 1, 2013 all across the nation.

You will think me a fool and a dreamer.  I am neither.  I am a believer in the incredibly vast reservoir of strength that is humanity.  I am a believer in a better way for America.  And that isn't going to happen from the White House or the Governor's office.  It's going to happen with you and me.  We are going to remember to be polite.  We are going to remember to be open, and honest, and warm.  We are going to remember what it means to be an American again.

We have to.  We are going to fall apart and lose our cohesiveness as a society that stands together if we don't start shuffling our feet in the direction of our own salvation.

I met a woman who told me that the Atheists' sign offended her and though it was not right to tear it down, he should not have put it up, essentially peeing on her holiday!  I suggested that her creche might affect him exactly the same way and pee on his belief system.  To her credit, she said no more.  But I wonder who she's telling her tales to now.  Like the atheists bully me!  Atheists are violent men and women who want to silence the voice of Christianity!

Frankly, I don't think ten thousand flames could even singe the massive, pervasive message of Christianity.  Be like us or go to hell.

Atheists don't believe in hell, by the way.  I'm not sure where they believe they go, but it surely is not to the Christian Hell.  So it's silly to tell them to go to hell.  It's out of context.  It has no point of reference. 

Wow. Not a great week.

Tuesday I had shoulder surgery. I stayed overnight at the hospital.  I don't like hospitals. I don't like nurses who impose "appropriate" controls upon unreasonable patients who wonder why their 8:00 p.m. pills aren't here yet and it's midnight.  Or CNAs who impose "appropriate" controls when the inhalers were brought by the respiratory tech at 2:30, on schedule, but then she got a call and it's 4:00 and the inhalers are due again in 2 more hours so is she coming back or are we just skipping that does?  Dear, she'll be back.  Just relax!

And the pharmacist who apparently doesn't know that you don't absorb calcium properly without Vitamin D so instead of sending that combination, he sent Tums.  Which are calcium, yes, but they have no Vitamin D so they're useless as a calcium supplement.  This guy is a pharmacist for a huge hospital and he doesn't know that?  I'm a consumer and I know that.

There is, in other words, very little respect for patients in hospitals.  I take my medication at 8 and 8, and my inhalers four times a day at the same times every day and I drink probably more water than most people, and its good for me.  And 6 small meals a day have been the standard for hypoglycemia at least since I was 5, but apparently hospitals don't know that so that didn't happen either.

So I'm glad to be home where the pill alarm goes off four times a day, small meals are ready six times a day, and the day starts with a protein drink because, as one gifted doctor put it, if you have hypoglycemia, waking up is an emergency.  I have CNAs coming in am, midday and PM.  AM helps me shower and dress, and makes breakfast for me.  This morning's CNA also repackaged some food for me so I could actually eat it.  I have a vacuum sealer that preserves food nicely but it requires scissors to get the bag open and my hands are not in a position to do that.

So I have a big owie and I don't like those.  But something happened that I like less.

Just on a whim I searched for a nephew of mine.  And there he was, on mugshots.com, that sweet child whose mother was the worst human being ever born.

When they arrested her for felony child abuse, one officer, staring in horror at the battered, beaten, bruised and probably dying baby on the floor, asked that sweet nephew's mother, "Lady, how could you do this to a baby?"

And she said, "Hey, Man, no sweat.  You grab him by one leg, swing him around your head a couple times, and then let go."

She'd apparently done that several times.  He lived, though.  That sweet baby lived.

And now he's on mugshots.com.  His face is hard and angry.  He is ill-kept and I can tell you that he has not eaten well in a far too long.  He's on the run.  The charge is breaking and entering.  This a probation violation.   They don't know where he is right now.  But they'll find him.   They always do.  They'll find him in a drunken stupor in an alley, or in a drug induced haze in some stranger's bed.  They will find him.  They will try him.  They will convict him.  And he will go back to prison.  I wonder if his son even knows him.  I wonder if his son's mother cares where he is.

I don't think there are a lot of people who care about Jason.  But there is me.  He won't know that.  He'll never hear it.  But I do.

My wonderful son

Have I mentioned how I adore my son?  No?  Well, that's not good, because I do.  He's my best friend and he has this way of just getting right to the point.

This evening, every picture I have of him fell off the wall in Library II, in a tremendous crash.  I believe in omens.  I emailed him but heard nothing in ten seconds, so I called him.  He is well.  He is fine.  He is funny.  He is bright.  And he is mine.  He is my wonderful son.

I am so proud of the man he became.  And that knack for getting right to the point?  Yeah, sweet son.  I said, you know you could call and email more often.  And he said, yeah, I could.  So could you.

Long ago, I was offered a drug that they said might slow my MS.  I had to think about it because one of the side effects is a couple days of flu symptoms.  I mentioned to my son that I really didn't want to take this drug and ruin my every weekend with it, since I surely would not take the shot on a weekend night and miss work every week.  He listened patiently and then he said, let me understand.  You'd rather be blind and in a wheelchair than have the flu every weekend?

When he was in first grade he asked me why I didn't wear a seatbelt.  I gave him the usual reasons, but I think my biggest one was that they wrinkled my clothes.  Anxiously as only a six year old can be, he said, "But Mommy, if you have a car accident and you die, who will love me then?"

I just wanted to take this early morning moment to say that my son is a wonderful human being and I am proud of the man who came from the boy I raised.

An open letter to Mr. Stephen King

Dear Mr. King:

I know that you'll never read this, but I so want to get all of this said, that I'm going to just say it.

A long time ago, my Gram sent me a book titled Carrie.  She said she thought the fellow who'd written it had some more books in him, and if I liked this one, she'd keep them coming.  I liked it.  Today, I own every book you have written, many of your articles, and all of the shorts you had done just for audio.  And I am gifting those things, but for the audio, to friends.  I am giving them away because soon I will not be able to read them anymore.  I have chronic corneal dystrophy which means my cornea cells are dying.  Surely, in time, I would be eligible for cornea transplants, but I'm not putting my name on that list.  I won't take the corneas that a younger person needs.  I have read thousands of books, and I have traveled the world.  I have seen the faces of my loved ones, and I have seen the sky full of stars.  I have seen.  Let the gift of sight go to one who has never been able to see.

I must say, Sir, that you use a lot of words in your books.  I hasten to add that every one of them is the right word, but do you know how much it costs to mail your books?  Those are big books!  They're heavy!

And speaking of your books, Mr. King, in reference to Cell, I must ask ... And?

Surely that wasn't the end.  Did it work?  Did it have broader application?  What was the world like then?  What was left after the virus was wiped out?  Surely, Sir, there is more.  You are not generally accused of leaving one hanging without resolution (never mind The Dark Tower Series just now) and you've left America hanging here.  Is there a sequel?

I am in the process of gathering audio versions of everything I can find that you wrote.  And I have a request.  Mr. King, please don't let them abridge your books for audio!  Your words are the right ones.  Don't let some publishing company hack tear your books apart.  Stand, Mr. King.

I am,

Your Constant Reader

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.