Friday, November 23, 2012

What's with Russia? Здравствуйте России! שלום ישראל!

Hello. For my American readers, hope your Thanksgiving day was enjoyable, with limited bloodletting and half way decent food.  If you watched or were forced to watched any football games on TV, be grateful as well that while many people do not have the bounty we have in this land, they also did not have to watch the New York Jets.

Like I did, and have for over 40 years.  And I thought MS pain was bad. Whew!

Anyway I was looking over the list of nations that peruse this blog and noticed that Russia, per, has more readers of these words than any other nation, with the US second and Israel third.

So for my Russian readers....

Здравствуйте России!

Спасибо за ваш интерес. Мне интересно, если читатели есть заинтересованные в лечении рассеянного склероза или биполярное расстройство информации. Есть либо нарушения распространены в России? и где ты в этой большой, красивой нацией? Я хотел бы услышать от вас, но если вы предпочитаете только что прочитали, это хорошо, тоже. Мир вам.

And of course....

שלום ישראל!

תודה על ההתעניינות שלך. אני תוהה אם יש קוראים מעוניינים בטרשת נפוצה או מידע הפרעה דו קוטבי. הם או הפרעות נפוצות בישראל?ואיפה אתה שבאומה מדהימה? אני רוצה לשמוע ממך, ​​אבל אם אתה מעדיף פשוט לקרוא, זה טוב ויפה, יותר מדי. שלום לך.

As we head in to the Holiday Season in the USA, I hope everyone finds a time of peace within themselves and offer it to others.  But I've got doctors appointments and therapy next week, so back to the grind of battling disease that knows no season.

We're heading toward 2000 page views.  I hope you do find this interesting.  More soon.

Sunday, November 18, 2012

What I am not grateful for....

I am grateful that I can get up each day.

I am not grateful that it is to run to the bathroom, again.

I am grateful my bladder/bowel system still function

I am not grateful that they function so well I have more laundry to do.

I am grateful I have running water to help do my laundry.

I am not grateful that this is the only running I can associate with.

I am grateful I can associate with people, places, and ideas.

I am not grateful that most of the people I associate with recently wanted either my vote or a cash donation or both.

I am grateful I have money to donate to help others.

I am not grateful that many of the causes wanting money do very little to help the people with the actual problems, only line their pockets with administrative costs.

I am grateful I was able to help in the administration of a social welfare program as my career.

I am not grateful for the hacks, political drivel, and genuine dunderheads that passed for some employees in that program.

I am grateful for those employees that made my 30 years there as rewarding as it was.

I am not grateful that I can not and will never see them daily again.

I am grateful that I can see.

I am not grateful that I can see bugs that are not there, here voices and songs when there are none around, and am sure that glass angel in the bedroom is out to get me.

I am grateful for angels, seen and unseen.  They have kept me on the right road during these challenging years.

I am grateful for the challenges that have been placed before me, for, with the help of angels, I endure and thrive.

I am not grateful that the main challenge is one I will never surmount.

I am grateful I can type surmount.

I am not grateful that many letters I typed, and stories I've told, and blogs I've written, are about and to people who are very long gone.

I am grateful they were in my life.

I am not grateful that two of them (ahem!) haunt my nightmares to remind me that they passed along the proper causes for their son to be a 56 year old guy who is bipolar and has MS.

I am grateful for his roses and for her pushing me to write.

I am not grateful that I did not appreciate them both more, but have given due diligence and hope they are proud of who I am becoming.

I am grateful that one woman took a chance 30 years ago, and went on a date with me, we'll be noting that anniversary in 2 weeks.  And dear friends who have known me even longer and still opt to acknowledge that.

I am not grateful that I have to acknowledge that this piece is getting too long, so I wish you all a Happy Thanksgiving, and Holiday Season.  It's a manic depressive's favorite time of year.

Thursday, November 15, 2012

Should I invite the voices in my head to Thanksgiving?

One of my heroines is Marcia Purse.  She's the voice of's Bipolar Disorder Guide.  The site is filled with info about bipolar, the various levels, treatments, and hope.  But her November 13 issue struck a chord with me, in fact several.  Marsha related that the voices she hears, her hallucinations, sing, or rather hum, to her.  She heard everything from the Mexican Hat Dance to Perry Como being hummed solely into her right ear.  Her psychiatrist has urged her to tell the hummers to shut up.  Marcia is rallying and will get things right soon.  Both she and her column are valuable resources.

For me, the singers start mostly during silence, like Marsha's, but also there are voices when the heat comes on.  The voices, like a number of people talking, comes through the heat ducts and tell me stories but its so confusing I can't concentrate on what anyone, assuming there is anyone, is saying.  I've never heard the lines you hear in the movies with hallucinations such as "Kill yourself!" or "Shoot the President!" or "Go on American Idol. Really! You're that talented!".  Just mumbled stories.

Right now I've got the jazz station from Spotify on and the heat is whooshing around the kitchen but I'm fairly certain it's just me here this afternoon.  But then I've got to get up and go stand under a heat duct to get the full effect, and I'm just trying to get this done.  Maybe later.

Hallucinations can occur in folks with bipolar disorder when the depression or mania has psychotic features.  Taking a look at what some contributors added to Marcia's site made me feel good because I'm always seeing black bugs flying around the house (I mostly thought I needed new glasses, but bugs in Northern Hemisphere winter? Nah.) and I regaled readers some months back about my being watched by the glass angel in our bedroom.

This angel....
which to me is like this Angel....
 from Doctor Who.
So it sounds like as long as you're keeping the mind as engaged as you can on positive, pro active things, like moving your fingers over a keyboard, the singers/whisperers stay off where they belong.  But no matter what, you should be sharing this with your doctors.
I don't think I really need to invite the whisperers in my head to Thanksgiving, as they'll come anyway. Just glad we don't have to feed them. Maybe they have their own version of the day.  "These hallucinatory mashed potatoes are as miserable as you are! What? no green bean bundles? Okay that's it.  Everyone, Bohemian Rhapsody! Ah, one, ah two..."
"Is this the whole meal?
Pass the dark meat to me,
How was the car ride?
Why'd you vote for Mitt Romney?"
More on Thanksgiving later.  Thanks for reading.  The voices in my head are telling me they need coffee.  They should get their own car.
Thanks, Marcia, for keeping us informed.

Monday, November 12, 2012

An M.S. in MS

I know nothing about MS. Really.  If you're looking for wise counsel on this pain in the butt (and other places) neurological nightmare,  there are other places.  I am a total dolt.

Ah, this means you must have new doctors, Tom.  Or you're starting over.  Let's go with the latter.  One of the more popular posts here is the Mr.T one from the early days.  And in there I talked about pain and trying to deal with it day to day.  My primary physician is in reality a Doctor of Orthopedics.  She was the one who could literally pick me up and adjust me like a Rubik's Cube, and she suggested some exercises that might limit the amount of pain coming from my lower back, which I'm guessing comes from muscles tightening and the oddball walking stance I and numerous of my MS cohorts have.  Yes, it looks like we're drunk sometimes when we stroll down the boulevard, and I've never drunk enough alcohol in one night to see if I could balance it out.

Actually this is a picture of me walking around my office, back when I had hair and great taste in ties, and just coming back from a meeting with my Commissioner.  But you get the idea.  So anyway my Primary recommends Physical Therapy.  So back I was at Seton Health in Clifton Park for Therapy, exactly one year after I had started it the first time.
And this is pretty much what happened.  The conversation was pretty much the same as a year ago, except with a different therapist (my usual one off on maternity leave).  And this is where the perpetual education of MS appears again.  Here was someone who actually looked at my legs, picked them up, moved them around, really observed what was going on and then told me.
"Actually, your right leg is getting weaker than your left." 
She demonstrated this in how high I could lift my right leg, the ability to swing it back and forth, and in general range of motion.  I had thought from day one my left was weaker, because, well, that was what I was told by a person sitting across a desk from me.  Those people in the white coats, you know them?  OK, no rant.  But the physical therapist spent more time with me in that one visit than a trio of doctors had in the last month put together (not counting my psychologist because the 55 minutes are paid for already - but she's been incredibly helpful).
Sleep has been difficult since we returned from Disney, and the therapist and I talked out some thing we're going to try.  It's pain and brain, so exercises and making sure the drugs are in order will be the script there.  Put a pillow between my legs, bolster my back, and try not to snore in my wife's face.  We're still working on this, but you can get a lot of writing done at 2:30 a.m.
Also we're back in the pool again for Water Therapy! Woo-hoo!  I really enjoy the warmth of the water, and the camaraderie there.  I also enjoy standing with little pain, walking, moving in relative comfort.  Happy to do the exercises.  This week I'm going to do the "land" exercises just before driving down to Clifton Park, doing this.....


and then try the "land" exercises again, and see if there is even a smidgen of difference.  I can raise my arms directly over my head, but that's it, no longer any further back.  The legs are not going up as high as before, like the right leg, see.  Maybe all this will help, maybe not.  The muscle deterioration will continue and I'm at best slowing down the attack, not quite repelling the army.
But my allies, not the so-called big ones, but the small ones, the Belgiums of the MS battalions, continue the fight to ease pain, and keep me in the fight.  MS is battling ME.  Fight well, my friends.  Keep learning.  And never assume those people behind the desk know anything.
A little side note.  Last week I gave my second memoir reading at the Troy Arts Center with a gathering of other writers on The Holidays.  The event was a great outlet for creativity and it kept me primed (read: manic) for a few days.  But all the stories were well received, and it's nice to be on stage (show biz!) again.  I'll post the Holiday story sometime next month.
I do have a M.S. degree, by the way.  A Masters in Public Administration.  Multiple Sclerosis was not impressed with this piece of information.  The diploma sits in a drawer someplace.  As long as I have co-pay ready, I'm welcomed anywhere.
Over 1700 page visits so far.  Thank you.