Year Four - The First Real Symptom

So here I am again, I guess it must be fate (oops, sorry, almost fell into a Peter Cetera/Cher reverie there).  Probably it's because I'm off the really good meds right now as my psychiatrist opted to take a quick vacation with his kids back to South America and sending out a group message on the phone to reschedule patients.  Alas, when the phone rang here, Jackie picked it up and, as my poor darling is partially deaf (hearing aids and all), could not understand the message and hung up.  So I had no clue and when Monday came I went to prescheduled appointment only to be met with a locked door, and, eventually, the receptionist.  She explained and a new day was picked.  I asked about scripts I needed and they were put in place.  Unfortunately they were all the wrong ones.  I take Klonopin and Nuvigil, which are controlled substances in New York State.  You need to be given the script right from the doctor, so I called and waited and finally this morning I heard the scripts are ready.  So another joy ride to the psychiatrist later today, and then the pharmacy.  I'm going to put the previous in italics: So another joy ride to the psychiatrist later today, and then the pharmacy.  I at least have health insurance that lets me do this, for which I am grateful.

Earlier this week we had our support group, and the gang talked about the holidays and how they did or did not thrive through the two week break in meetings.  I'd like to discuss Mrs. J.  She is a recent widow and has no enthusiasm for any part of life except her little dog.  She can drive, but finds it exhausting.  In fact everything is exhausting.  So she goes nowhere and sees no one.  She talked about her late husband, and what a music enthusiast he was.  I just asked the question "What music do you like?"  She told us, and we encouraged her to play music, and recommended stations on the radio dial that she would like.  I told the group that I try and have music going all day, because, frankly, when the house is silent is when the voices creep in.  Right now I've got a new age channel playing Earth Lullaby by Jennifer Zulli.  If I need to go someplace early in the day (like unrescheduled psychiatrist's appointments), I'll crank up the rock and roll on the iPad, and dance, or something like it, around the house. Fortunately the house is back from the road with lots of trees and bushes.  Gets the motor running for a while.  Music speaks to me, at any rate, whether it be Beethoven or Roll Over Beethoven or A Fifth of Beethoven.

And it helps to have it as we move into Year Four.  Now I may not have the classic version of MS, but I do have an idea of what's going on in my head and things seem a little cloudier than last year and my balance is a little more off.  But here's the kicker:

I am a devout Trekkie, as those who have read these posts know.  As said devout person, I know how to do the gesture.  There's lots of people who can not for whatever reason.  A few weeks ago, I was watching a Trek rerun (counting down to the new movie) and I made the hand signal for Live Long and Prosper.  Only my hand did not respond quite right:

The left responds the same, only its just the pinky that doesn't get the news about what its supposed to do.  By the way, that's my actual hand, and not something I grabbed from Google.  And while not being able to do the Vulcan symbol is not a big deal (except at the movie in May), but it is another manifestation of losing more control over the body, i.e. the lesions doing their thing.  You can add this in with my toes kind of going their own way, and the extremities are showing the road ahead.

One good thing is that I'm not as far as long as my dad at the same time frame.  I've spoken enough about it here in previous posts.  I'm just as trapped inside, but I watch this with a wonder that I am pretty sure he never felt.  I know what's coming and am working as hard as I can to slow it down. I've still got a lot of things to do.

May we all Live Long and Prosper.

We Are Not Alone, Charlie Brown

It happened today at the DBSA support group.  I was sitting in my car getting a quick sip of latte from my Dunkin Donuts mug when I saw the door to the church where we meet swing open and a young lady I'll call Elise came out.  She was running toward another young lady who was just getting out of her car, a trim young woman with long black hair, and I watched them hug.  I'd never seen either of them before at group, but they were long time members, as I was the new kid.

The two young ladies took seats near me and we began the group with the usual reading of the rules (be nice, etc.) and introductions.  The young woman with the skinny jeans (whom I'll call Michelle) was fourth on the list and she began to talk about problems with meds and doctors and shrinks, and pain in her legs, numbness in her hands.  Getting the idea?

I had thought I might be the only person with bipolar, PTSD, and also have MS in the area.  Turns out no.  Michelle as well. There was a bonding immediately.  Michelle has RRMS and different challenges than yours truly due to age, income, and past challenges.  But we face the same demon every morning, determined to wrestle that demon down, even if its just for the day.

It was said in the group that more people show up as the days roll closer to The Holidays.  Happy Hanukkah, by the way.  You can understand it.  We can sound like Charlie Brown very easily.

Charlie Brown should be in our support group.  He would find his answers without having to direct the play and find a role for the Christmas Queen.  But we'd miss the Snoopy dance.

The fact that Snoopy is cowed into not being joyous by Lucy and Schroeder is more telling than most in the story.  Snoopy has to hide his talents (animal mimicking, etc) because "it's not called for."  He is threatened ("I oughta slug you"- Lucy) and remains slightly apart from the group through the whole special, even when he joins in the laughter at Charlie Brown and his tree, or in singing the carol at the end.

We need to dance and be as joyous as we can.  We get so short a time on this planet that we have to celebrate ourselves, recognize our faults, and be open to new things (like Charlie Brown at the end, realizing the true meaning of Christmas [whatever that means to the reader]).  Right now it seems like a time to celebrate a family, one long ago, and one established just this morning. I met a sister.

More holiday stuff to come.  Almost to 2000 pageviews. Thanks for reading.

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!