Saturday, December 28, 2013

I hab a code

Every time I get a cold, and its an annual thing with me, there will be one night when I can't sleep.  They could put me in a sensory deprivation tank (but with the tinnitus in my ears? - nah), pump me full of even more drugs, use either ether or laughing gas or whatever they want to do and my eyes would be wide open and what is left of my mind will while away the hours picking fantasy baseball teams, or rewriting movies, or bring about world peace as soon as I become master of the world, which I can make great headway on tonight since I'm awake and every else is asleep, including you.

The drugs I take do make me do what to some may seem odd things.  Case in point today my wife went to the local fitness place to work out and we agreed that I would meet her for breakfast after when she called to tell me she was ready.  That's what I understood.  I was wrong.  I was supposed to meet her at 10 AM.  Well, this was a disaster, said the iceberg to the ship.  My wife waited for me to appear while I waited for her to call me to tell me to appear.  And she had forgotten her phone.  Eventually she came home to see me sitting in the kitchen waiting for her call.  This made for an uncomfortable few hours.  I don't think as well as I used to.  We did agree to get some cheap Tracphones to keep in our cars so that we can always call, even if we forget our regular phones.  Of course we could also accidentally drag the car phones into the house, and then forget them as well.

So we will negotiate on making sticky notes as reminders.  I sometimes get annoyed at these reminders as they are notices that the sharp blade I once was is dulling at a rapid rate, and scraping me against a wet rock will only make me feel worse and sore.

You know, you start thinking about this stuff when you're there with all the other sick people at a doctor's office, and they call you in and set up an EKG and you don't register anything on the meters so they have to keep ripping the chest hair to move the nodes, and press them hard to get any reading.   I've been fortunate that the heart and lungs look good, while everything else falls apart.  It's like having a Hemi engine in a Yugo body.

Keeping me company this morning is the greatest hits of the sixties on iTunes. To my left is a manger scene next to a bowl of gold ornaments.  Right now one of the Wise Men has fallen over, Joseph is using his staff to hail a cab, another Wise Man is holding a bottle of Frankincense or Myrrh right over the Baby's head.  Mary has her arms up in surprise, or me thinks that on that First Night, a lot of people said "Ta-da!"  Which if it was the Miracle attested to, I think Someone Higher Up the God chain should take a bow, and not just with a star. Huge pointing arrows. Miles and miles high, pointing down.  "Look, he's right there! Yeah! Go see him! He'll talk about love and peace, and being nice to each other. Bethlehem, right there (I know there are two Bethlehems near Jerusalem. What, you did that part. Figure it out) Listen to him, but I know you'll eventually kill him.  That's what you do.  Oh, and sorry all the baby boys got killed by Herod's men while they hunted for That Baby.  Then again, why make this so easy for Herod. I'll just keep the Star.  Make a a good ornament."

Been quite the year with the return to my home town (at least a visitor's pass) and welcomes from school friends and town notables. I keep writing stories, feeling drab, but doing as much as I can in between daily reboots around three PM every day.  We even attended a few parties, and had a sumptuous Christmas dinner at a local French restaurant.  Nice.

I fully admit the youngsters are not at their best in this shot, but Jackie and I look fine.  On January 1, I'll be in my fifth year battling MS.  I can still dance.

Thanks to you for reading whatever you did read.  Hope you get some enjoyment out of it.  Here's to a peaceful and happy 2014 for all.

Now I just want to stop my nose from running.

Tuesday, December 24, 2013

Happy Holidays 2013! Murder at the Party!

One of the first lessons you get rammed in your head for both MS and/or  BP is that you will forget things. You will forget why you went into one room not five seconds after leaving the original. I have also forgotten where I hid my wife's presents. It's a small house but I can't be this bad.  Yet, there it is. Or isn't.  So for some solace, here's the Bubble Santa:

We had a party in my writing room, and the usual suspects all came.

What's a party without a Cylon,  a Smurf, a snowman in a box, and General Grievous from Star Wars, all being hosted by my teacher Geshe Kelsang Gyatso (he declined to come, but meditated on the whole thing) in the frame back there.

But you know you can't put these folks at the same party, and get that egg nog going (not that the Cylon or the General had any - weren't sure where to pour the liquid) but once Writer Smurf hit the nog, he started mouthing off about how Obi-Wan Kenobi was going to clean his (the General's) clock.    Well, you can guess what happen.

And then....

Tragic, but really you don't take on a Sith with a feather.  Fortunately, Captain Pike from Star Trek was in the area monitoring communications, and saw the whole thing.

We think the Cylon may have ratted out Grievous...guess they have a history.

Next year I'll try and be a little more circumspect about the guest list.  For this Christmas, I feel like crap, but my family was here, and we'll have Christmas Dinner tomorrow at a local restaurant (not Chinese). So what's to complain about?

I hope that 2014 is one of health and happiness for all.  It won't be for me, so I've ruined it already, but I am glad to open my eyes each day. I am blessed.  But to be safe, I'm going to stay up and see if Santa can find those presents.

Sunday, December 15, 2013

Tom Seaver, The Christmas Season, Elmo and Buzz Lightyear, and NYC.

Actually, this is more of a love note.

Jackie and I were in New York City a few days ago to take in the feel of the city at Christmas.  We did all the usual things - Rockefeller Center, saw the Tree with required picture, Saks' windows, St. Patrick's church (where God has a small apartment, but He's on Mercury now getting some sun while the church is renovated), great meal, and then I could not take it anymore - Stop Badgering Me.  OK, maybe it was my own fault. I wore my Mets heavy jacket and cap.  It's warm with tons of pockets, and the cap fits on my head.  Normally I just wear a baseball cap, and generic but matching coat. But this time I got it full blast.

If you haven't been to Manhattan recently, you'll notice that its slightly more aggressive in its marketing. Nearly every street has some huckster(s) trying to get the gullible couple(s) into a bar, bus, and if you are wearing something slightly noticeable like I had, you would be asked to stop and talk about the Mets (Hey, you, from Queens! Come on in! Mets got Grandy! Ask you a question [this type of marketing is in every mall - its the courtesy in us to that makes us stop, with the obligation to buy], and hey, man get your picture with Mickey Mouse (for tips - stick them in Mickey's pouch), even if it's the slightly psychotic Mickey coming down from a heroin fix.  And these two:

who should be even more terrified of the UPS truck heading for them.  What can Brown do for you?

Then there are the beggars asking you for money, and the Salvation Army group has found the funk:

And when you are not being asked for money, you must take flyers to a going out of business sale, spread the teachings of (Someone Here), go to a gentlemen's club, or get on a bus to tour the city when it is 10 degrees out.

After eight hours of this I told Jackie "New York is a great place to visit if there is nobody else here."  I would allow robots to work in stores and prepare excellent food.  NYC Public Library should be open 24 hours a day, and there should be just as many Mets as Yankees stores.  In fact, more Mets stores as we need the publicity.

Which brings me to Tom Seaver.  Tom Terrific was and remains one of my heroes, though he stopped playing baseball a quarter century ago.  He was the face of the Mets, and is still The Franchise.  He and his compatriots took a lousy team and finally got it serious, and the Amazing Mets of 1969 shocked the baseball world, and I had found my team.  Tom won Cy Young awards and pitched in two World Series.  While the sixty-nine team still gets the headlines, my love of baseball stems from the 1973 team that roared from last place in the summer to first in October. What a ride.  They are My Boys, more than the '69 and '86, and about tied with the 2000 team - What are we doing here playing October baseball?

Stupidity and greed sent Tom and other useful elements of the Mets off to other places, and we suffered through more mediocrity led by Hall of Famer Joe Torre.  Tom came back in 1983 to put some fannies in the seats of Shea and Jackie and I saw him pitch on Father's Day 1983.  I got to see him, and later he autographed a ball for me.  More dumb moves sent Tom to Chicago and he stayed there long enough to get his 300 wins before retiring after 1986 (oddly as a member of the Boston Red Sox).

Tom makes appearances now at the Hall of Fame in Cooperstown and other places, but he is mostly occupied by his winery.

And Lyme Disease. Third stage Lyme disease.

"A few months ago, I thought my mind was going. I couldn't remember things." He thought he was suffering from the onset of dementia. He became fearful, withdrawn, for the first time in his life. He was afraid he'd get lost in the New York City streets he used to own. After some tests, it was almost a relief to find out that he had Lyme disease, which could be controlled by vitamins, medicine, diet -- no wine, a cruel irony. And mental stimulation."
                                                                       Pat Jordan, The Constant Gardener, SportsOn

Third stage Lyme disease is like this:

Lyme disease can become chronic especially in the elderly or have poor health. This later stage in Lyme disease could also be caused by very late diagnosis and treatment of the infection or persistent infection despite medication. At this stage, the symptoms can be beyond your wildest imaginations and may include:
* Arthritis–In the later stage of Lyme disease, you may develop arthritis. You’ll have redness, swelling, pain in your joints and stiffness in your shoulders, elbows, hips, knees, and smaller joints.
* Neurological problems: Neurological problems will arise during the second stage, and they will increase in intensity. You could experience more severe numbness in your arms, legs and other parts of your body, along with an itch or burn. More headaches may be felt, as well as problems with speaking, memory loss, depression, anxiety, and panic. Additional neurological indications could be Bell’s Palsy, or facial nerve paralysis, and aseptic meningitis.
* Conditions which are serious symptoms and are a part of chronic Lyme disease include heart inflammation, visual dysfunction causing blurred vision, chronic fatigue, ringing in the ears (tinnitus), abdominal pain, pelvic pain, irregular heartbeat rate, hearing loss,urinary frequency,shortness of breath, fever, sweats, Diarrhea and irritable bowel.
                                                                                              www.zimbio. com

I had read the article (written by former pitcher Pat Jordan, a long time Seaver friend and author of A False Spring) the night before we went to New York. And I thought if Seaver, age 69, could get lost in this city, what luck do I have? There's a lot of MS in Lyme diease.

Seaver has his "cloudy days" and his wife of so many years Nancy helps him with notes, and he reminds himself with notes. And he does have some short term memory loss. I do, too.  Mr. Seaver has his family close, and while Jackie and I are (or have to be) more self sufficient,  we have angels in place as the other Tom does.  And he does okay.  We do okay.

We both have wonderful supporting wives. Seaver makes wine on a mountain. I write stories in a forest.  Neither disease will kill us, they just make each day a little harder to get through. Seaver, in the story, was really proud that he put in a 12 hour day of grunt work that week.  Grapes is hard.  But you gotta do it if you want the wine.  Writing is hard, but you've got to keep at it if you want other people to read your stories.

So we both struggle out to the mound, warm up, and then see what the first batter brings, get your sign and here you go, big boy. Try this....98 mile an hour fastball.

I would challenge any of the folks dressed up as faux celebrities of TV and movies around Times Square to try and hit Seaver's fastball, hell, even now. I would gladly pay the $20 tip. Cookie Monster can catch and Elmo can stand there terrified. I'd like to see that.
I can still walk around New York, slower, but that allows me to look into faces, hard faces on a winter night, trying to get home.  And the little Buddha inside of me, reminded me that if I was stressing about wanting to take Buzz Lightyear and throw him at My Little Pony (for tips), perhaps I should just say "May you be happy."  Easiest prayer ever. And it still works.

"Hey, Mets' fan. Over here!" May you be happy.

"Get out of my way." May you be happy.

"I got this cab first." May you be happy.

May Tom Seaver be happy. May Nancy Seaver be happy. And Pat Jordan. And Elmo and everyone wearing skimpy customs in Time Square. I myself am doing my darndest to be.  But Mr. 41 and me  will do just fine.  He is still The Franchise. And my all time favorite.  And if he makes more wine, I will drink it.  Let's go Mets.

Thanks for reading this far.  Next will be the Desktop Holiday Party!

Tuesday, December 10, 2013

Applying for Social Security Disability and other Hobbies.

Well, here's the package right next to my MacBook.  There's the envelope, the letter telling you that you must return the letter, and the pages of stuff that you have to supply answers for in order to receive benefits that you've already paid for in the system since 1981.

The Ponzi scheme called Social Security worked quite well for the Greatest Generation (please do not think I am not knocking the program as it was originally intended - for retirees, widows and orphans [like my mother, my sister in law and her kids]) as those folks didn't do much except hold it together during the Depression, beat fascism to death in WWII, and built the world's strongest economy ever and eventually drove the Communists out of business.  Now, though we Baby Boomers are rolling in the money and and since we cut back on the amount of kids we had, and the jobs that were here now aren't,  there's not going to be enough money for our kids and grandkids in the system to support everyone eligible as it now stands (less and less people paying more and more into the system).  But that's somebody else's problem.

I wanna get mine.  I was going to write "I wanna get what's coming to me", but since I already am a bipolar 57 year old male with MS, I don't want to push whatever luck I may have in standby too far. Its easy in this world to really piss off Karma.

We've gotten by on my wife's job and my retirement and I was content to do so, but when we had a meeting with our financial guru, she insisted that I should look into disability benefits (Social Security Disability - SSD)  Per the Social Security website:

"Disability" under Social Security is based on your inability to work. We consider you disabled under Social Security rules if:
  • You cannot do work that you did before;
  • We decide that you cannot adjust to other work because of your medical condition(s); and
  • Your disability has lasted or is expected to last for at least one year or to result in death.
Since just about everything you do ends up in death whether you were planning for it or not, I've always wondered if everybody in the nation is eligible.  The condition that ends in death is life.  I know, easy analogy.  Now the tricky part is, how to qualify.  Since I don't use a wheelchair, or walker, and I don't "look sick", its slightly harder to prove. So you tell your life story in pen and on line, the pen part is sixteen pages, the online only six.  The on line version can get your application started and you'd begin at:

There's basic stuff here - who are you, where are you from, how long since you last worked, who was the fourth Marx brother, where are your car keys right now, all the things that government programs have wanted for decades.  After the simple application comes the Adult Disability Report (there's a great amount of info for a child's application for SSD on the site as well)..still online, and this one asks for height, weight, the names of your doctors, tests run, and all prescriptions, medical release so that the Social Security worker can contact physicians, and then work history..

Did you ever, if you are employed, think about the things you do all day.  How much time is spent doing whatever it is you do for the length of your workday.  Ever crouch? 

Spend your day like that?  Because all you hear from the other cubicles is "Incoming!" and bam, another case on your pile.  Eventually they find you under your desk and you're back to sitting there until there's a lull and you start crawling toward the elevator (Please be specific as to how much crawling you do per day). Now I'm three years away from a place that I did this work so I'm guessing, what did I do all day?

On the Adult Disability Report, there's a small section for education, and then a space for remarks.  I literally could not think of anything.  How do you describe MS? So many different factors, it slams into each life with a deck of cards, and then deals out what you get.  The bosses at DSS liked whatever I did, so I must have done something.

So I left it blank, and sent it off via InterWeb, and a few days later, right after Thanksgiving, there was a packet with a 16 page questionnaire in the mailbox. Now you could fill that out or there was a simpler version on line.  I recommend taking the time to fill out the longer version, pen to paper. When you have an illness that's not written all over your body, you've got to be able to communicate the inner turmoil your brain and nervous system are in everyday.

Naturally, if you need help completing forms, get it.  The Social Security Administration can assist.

So the packets are gone in the mail, and the guiding rule is about 120 days for a decision.  Maybe by March 2014. 

I never thought I'd actually be able for this, after all those years of telling my clients to apply for this and that, and showing them how.  Now here I am, joining many others in the waiting pool, and being told by someone "You look great!"