My Support Straps are Showing!

Wow, I seem to have disappeared for a bit.  It seems that in Bloggerville you can disappear for months or years at a time and not be missed because there's always another blog someplace else to read.  I gotta keep up the quantity, and you'll decide the quality.

The post Thanksgiving family-thon waned and so, strangely, did the screaming nightmares.  It's not that the family themselves caused it, but the routine of our nights, and yes, bathroom use, had to be adjusted and while I was my usual quiet self, the thought of people not married to me being there all night freaked me out and sent my subconscious back to the years of my father wandering the house at three in the morning, banging furniture demanding to be dressed.  All it takes is one little push, and down and down I go.  Staying up here where I am just so much smoke and mirrors sometimes.

But talking about it helps, and that's a major thing I wanted to share today.  Last Monday I attended my first DBSA (Depression & BiPolar Support Alliance) meeting at a local church.  There were five people meeting in the church's choir room.  I was the youngest.  But the age dies not matter, in fact there are people who have had to deal with BP for over 40 years in this group, which shows that it can be done.  You have bad days (and there are people in this group that are having bad days, I mean real bad) and you can come here and have a cookie and talk and no one will judge you.  We proscribe no drugs, we provide reassurance - at least one of us has been there.  (Yes, I see small objects at the side of my glasses.  Yes, I can hear voices in an empty room).  No one will say "Snap out of it" or "Get a job", except in jest, because we've all heard it from the "Normals".

This is the first group for Bipolar support group that I've ever attended, and it already feels like home.  Discussions were made about psychiatrists, and psychologists, and where some of us may find a better fit.  (More on my psychiatrist later).

My physical and water therapy have been extended through most of December, and we're trying things to work with specific muscles in various parts of my legs, with weights on in the pool.  Looks like I'll be headed back to the pool in early 2013.

On Wednesday of last week I had  a meeting with my neurologist who said my walking has improved, and that I seemed to be doing quite well, ahem, considering.  I agree.  A new MRI was ordered and completed that week.  Further details on what it may show will be shared later this month.  This one in Saratoga doesn't have music like the one in Troy.  Here's another good reason for support groups. Everyone there has probably already had one.

Earlier that same day I had gotten a note from one of the Albany, NY's writers groups inviting me to join them.  As my local group will soon be ending for a few months, it's a chance to change scope, and get a fresh look at what and how I write.  Unless of course they don't like it, then the heck with them (kidding, kidding).  This support group does judge your work, not you, and they do it because they want you as a writer to succeed.

I wrapped up the week with physical therapy, and new exercises that I can incorporate into just about anything whether I'm moving or not.  One thing I have changed is that I'm writing this post at my kitchen table and not my desk, sitting in a wooden chair so that I am at 90 degrees for my back, my lower torso and with feet on the floor, limiting strain, and keeping me concentrated.  My den chair allows me to slouch and that normally leads to zoning out and minutes fly by and I'm staring at useless web pages.  Keeping focused is better.  Slouching comes in still, but when I'm talking to you, slouching is not allowed.

A few months back I told you of my first psychiatrist's legal problems, which are apparently still pending.  The new psychiatrist has shown some enthusiasm but has chronic office staffing problems, such as the office manager oversleeping and keeping three patients waiting (me the longest) and not the hint of an "I'm sorry" because, after all, we don't work, what else do we have to do?  Oh, and please wait on the co-pay until I get back from Dunkin' Donuts, OK? Just sit there.  Sure, after all, what else did I have to do? I don't work.  And they write the prescriptions.

Support can come from many areas, some you didn't even know you had.  I've gotten good wishes from old high school friends I've not seen in years, until recently, and from folks on line.  It's one of those George Bailey moments (you know, George Bailey[Jimmy Stewart], It's A Wonderful Life?) when George realizes who he touches as you go through life.  In my DBSA support group, one lady told us that she had remembered something I had said, and that it had helped her accept her situation more.  You just need to be your own Clarence sometime.  Now Clarence was... oh, go watch the movie.

And when you're done with that, see if you can, whether you are Bipolar or have MS, or whatever your situation, think on the invisible lines that tie you to others.  What you did or did not say that may have been a more positive response to any situation?  You can't see the strings of support, but they are there.  And for some of us, those strings can keep us upright, standing, or if loosened, falling into an abyss.  And we have strings too.  We can drag many down.  But the vast majority of the challenged like me and others in support groups of all kinds look to hold those strings together with everyone.

For that is community, that is working towards peace.

More soon.  Thanks for reading.  Heading towards 2000 page views.  Wow!

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.

 

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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.