And now...

the pain is in my right side as well.  Mirror image.

Bugger.

But, as my heroine says....

Just started reading Michael J. Fox's book on his battle with Parkinson's. Neurological People Unite!   (NPU) Our theme is "No we are not fine, but thanks for asking!"

Can you come up with a better one? Come on. I know you can.

Angels in the Swimming Pool

I'm sitting here with a home made ice pack on my left shoulder.  The pain and discomfort on my left side has grown over the last few weeks to the extent that what was an occassional tingling is now a constant, albeit not cringing, throb with tingling down the arm to my left hand, dancing all tingly like in my ring and middle fingers.  The ring finger is bopping to its own music even now.  Lucky I don't need it to type. 

So today is water therapy day.  I was hesitant to make the drive today as the Mets' R. A. Dickey was going for his 20th win and with the pain in my arm, etc. etc.  But I put on the big boy pants and went down the road to Seton Health anyway.  And, as usual, was glad I did.  The therapist had a few moments before splash in time and we talked about the arm pain.

"Maybe you can ice it," she said.  "Tone down the exercise.  See how it goes.  The shoulder could just be inflamed.  If you find its not changed by Tuesday (our next session), then maybe its inflammation not from exercise, but is being pushed by MS."

Maybe. Always maybe with this thing.

So into the routine, and into the water, bobbing around like an apple in a Halloween tub, in five feet of warm water.  I'm the youngest guy in the pool, sometimes the only guy, some times just the youngest, and I stay in my little corner moving arms and legs, using water weights lighter than I've used before.  Damn, this hurts.  Okay, not Spanish inquisition pain, but that's not my MS. I have the nibbled into a wheelchair by ducks version.  Longer breaks between stints of work.  Later, the therapist turns on water jets and the soothing spray numbs my back and arm throbbing for ten minutes or so.  I gab with the ladies on good places for dinner.

The hour passes and its time to head out.  Just before I leave the pool, a beautiful young lady of about ten years of age, and her mom, stepped into the water therapy room.  The girl's body was skin and bones.  She had the look of a child who has seen perilous times, but has come through it all with an amazing smile.

And a limp.  But take her from land and place her in the water, and she floated with wide eyes and a radiant grin.

"This is like walking on the moon!" she said as she moved serenely from one edge of the pool to the other.  Her mom smiled wanly and excused herself.  Her child was in safe hands.

I hope she does walk on the moon.

So, another week of doctor's visits and changes in prescriptions.  We doubled the Nuvigil to 200 Mgs and MY AREN'T WE UP AND PEPPY!  Time to do the laundry! Again! Done? Go next door and get the neighbors!  Do theirs! Finished that novel? Great, write the next!  Use exclamation points!

Quoting my psychiatrist:

"You've got MS and are bipolar.  There's nothing you can do about the MS,

so looking at your bipolar status, you can be depressed or manic.  Personally,

I recommend manic.  Within reason."

 

 

I'm reasoning as manically as I can.  But then I think of that sweet child moving about the pool, feeling weightless and free, if for only a short time in her busy life. Tis well.

 

 

All of us in that pool are damaged, looking to hold on to the side or feel free to float and dance.  Like angels dancing in the morning sun.  I see them there in that water every Tuesday and Thursday, whether helping or being helped.  There is no hope in my disease. But there is amazing peace. Like walking on the moon.

My 47 Percent Worth

Damn, I knew I couldn't do it.  I knew that sooner or later I'd get around to blogging about national affairs, when I told myself, and you, beloved reader, that I wouldn't.  We'd talk about MS and being bipolar and how that affects me, and maybe you, and families.  But isn't the big world view also about families and the decisions made that affects them? Or it should be? Instead of wealth and power and domination?

Which brings me to Mitt Romney's 47% comments at a fundraiser. He said, according to Mother Jones site:

[T]here are 47 percent who are with him [President Obama], who are dependent upon government, who believe that they are victims, who believe the government has a responsibility to care for them, who believe that they are entitled to health care, to food, to housing, to you-name-it -- that that's an entitlement. And the government should give it to them.

Now I am retired after putting in near 30 years in the Social Services world.  I handled it all from Food Stamps, when they were actually coupons in a book and not an ATM card, to Medicaid, Cash Assistance (call it AFDC, TANF, whatever) with a trip to Employment programs.  These were and are the entitlement programs that are popularly(?) known as "Welfare."  The majority of the benefits go to seniors and the disabled who can not work, with a good chunk helping to support the working poor.  Yes, poor people actually do have jobs.  In 1996 Congress added a serious work requirement to AFDC (which became TANF - Temporary Assistance to Needy Families), and turned the program more into a block grant (this means: here's the money, here's your goal, you figure it out from there).  We adjusted.  Soon there were fewer people on cash assistance.  It was kind of a self fulfilling prophecy since there was a five year time limit on being eligible for TANF.

I don't think I'd be going out on a limb too far if I said that Welfare, in any of its forms, has ever been popular with the taxpayers.  Hell, if you walked around the building(s) where I worked, we weren't all that thrilled with it, despite the paychecks we got on Thursday.  We had the clearness to see 2nd and 3rd generation AFDC/TANF recipients.  Something was clearly not working, and it wasn't just the recipients. Frustration for those of us working in the system was reflected by empty desks (and hiring freezes), and piled up work so when recipients contacted the agency that phone may just ring and ring, adding to their frustration and on and on.  The assistance system as it stands now is fundamentally flawed, means testing the poor for minimal assistance, and Congress was considering more cuts in Food Stamps but fortunately(?) Congress did what it does best in the summer. Nothing.  Sorry, farmers, looking for help.

I recently read a post from a former local supervisor at my agency noting his frustration when he left the DSS building in Albany seeing recipients outside smoking and using cellphones.  Of course, county employees such as him and myself merely went to the back of the building to smoke.  We could use our phones at our desks, but only during lunch hour (Note to present administration:  How's that working for ya?).  I too would feel odd when I left the building and see this same situation.  And I think that's one of the things that makes it so easy to dump on these assistance programs.

You can see it.  You can drive around cities in I would guess the entire country and find areas of poverty.  People are standing around the welfare building.  A semi-hobby of mine is when I was traveling to find the welfare department for that city/county.  And there you are driving by, going to work or something important to you, and those people (sorry, "those people" - if you have any racist tendencies, please fill in the group you don't like of your choice) are standing there in front of those buildings.  Why don't they get a job?  I mean, money for nothing and kicks for free (we'd provide the kicks, or security would.  Ah, power.).

Poverty is real.  Drive through the same cities I did and thousands more I won't be able to. There are areas that just don't make the video.  I live down the road from posh Saratoga Springs which brings tourists galore every summer.   Right near the swell homes and mansions and race tracks are dilapidated homes that people still live in.  Glad to provide a tour.  Infested public housing visits a speciality.

I hope, and I think there may be some validity, that that gut "Get a job!" reaction is one that hides the more serious thought of concern for people in serious trouble, or thinking of the fact that you yourself are living paycheck to paycheck, and are not that far from not being able to feed your family.  

We think in two ways - love and fear.

All right, I'm supposed to be dealing with MS and BP here.  And here's how I barely connect the conditions and my Department of Social Services years (aside from the stress from my DSS years, which you might detect in the writing, added to MS and BP symptoms).  My wife Jackie and I attended a presentation at the local MS Society last week.  These are informative little get togethers, this one dealing with the yucky details of wills, living wills, funeral preplanning and the like, but always good pizzas and subs to nosh while meeting other folks dealing with MS.  One gentleman, older and using an oxygen tank, asked about  a supplemental needs trust.  Click to the left if you want to know what it is.  Anyway, what did get me was his comment:

"Those people in Medicaid in Albany County don't know nothing.  That place is a joke!"

My wife and I shared a look of knowing.  But here was a man trying to find help and stated that he was being blocked.  Long ago and far away, his concerns would have ended up on my desk as I was the supervisor of that unit.  A couple of folks who knew my background at the meeting looked over at me and smiled at my smile.  DSS a joke? I don't know.  I'm not there (and admit there are days I wish I could be, for even in my dreams I am there just helping out) and have little contact with staff there now, except for old friends.  Could I have solved the gentleman's problem if I was still in the chair? Dunno, and never will.

This man, as far as I could tell, is part of Mr. Romney's 47%.  Looking to the government for assistance and, oddly, asking the government to not count at least part of his income (a pension of some sort) so he could qualify for more assistance.  I would hazard a guess this guy pays no income tax, but does his part with other local taxes such as sales tax.  I do pay income taxes on my government pension (New York State - County employee) but I doubt I'd get much of a break with any proposals.  However, I am DEPENDENT on that income (granted I worked for it in the past), and also DEPENDENT for my health insurance, which doles out to pay for the many doctors and prescriptions.  I could try working but those of you who know with both MS and BP I'm not very helpful most of the day.  But now and then...

Like the country song goes: I'm not as good as I once was, but I'm good once as I ever was.

So yes, Mr. Romney, I am dependent on that, and I do have an entitlement feeling.  I worked hard for these public benefits, at least I think I did, and now as these disorders take greater control of my life, I will be dependent upon the health care system to keep me going for as long as I can.  Whoever is in charge over the next four years may affect that health care system, assuming Congress does anything else except send me postcards telling me what a great job they're doing.  So I am watching.

One last thing.  We spend at the federal level approximately 13 billion dollars a year on TANF.  We have spent approximately 1.376 TRILLION dollars on the Afghan and Iraq wars in the past ten years (or 125 billion dollars a year).  I'm fairly sure that no one on my staff killed any of the recipients we worked with, though there were days when rocket launchers were requested.  I kept mine locked up.

You don't see the war.  Maybe the coffins. But you can't tell the coffin to get a job.  It's got one.

More later. Thanks for reading.

Wedding Anniversary

Jackie and I were married September 21, 1985 in a chapel at my alma mater, Siena College, in Loudonville, New York. 

And we lived happily ever after.

The end.

The beginning.

When we met in 1982, I was bipolar.  When we married, I was bipolar.  And now, 27 years later, I still am.  It’s just that no one told me (us) that I was bipolar until 2005.

So why I am what I am has a name.

And yet she married me.

In our early days, I told her about the strange disease my father died of, and how he changed and the damage that did to the family.  I told her I thought I might, might, get it too.

And then I told her that I felt it best I not have children, seeing how bipolar and whatever my father had can be passed along.  This must have concerned her then, as it does now.

And yet she married me.

She saw me depressed, manic, and everything in-between.  She saw my anger, my battles internal and external, how my job affected me.  How my bipolar mother and I stood at odds and yet I had to save her time and again.  My wife saw how it was.

And yet she stayed.

We dealt with the losses of family and friends, being there when we could be, cheering from afar when that was all we could do.  And we stayed together, holding each other close as the world we knew tumbled down.

And then I stumbled too much, and got help.  And she was there, making sure pills were taken, and celebrating a quieter Tom.  But still a laugh riot on occasion.

Then my legs started acting up, that is, going their own way now and then.. Doctor upon doctor, then the diagnosis.  I called her from my car (using Onstar, of course, and I was parked) and I told her over the airwaves.  I have MS, which is what my father had  She did exactly what I thought she would.  She looked it up.  When I got home, the conversation began, and it continues.

And she stays.  Tonight we go to a MS Society presentation on living life to the fullest.

My partner, and my best friend.  We go on together.

I treasure the anniversaries more now. No parties or any of that.  Just the two of us sharing a meal, talking baseball.  Time is our friend and enemy.  She holds me up, I make her laugh, we know its all precious.

 I am still dancing, if only in my head sometimes. And she stays.  I am blessed.  Happy anniversary.

More to come.  Thanks for reading.

Meet your mind! or mine, actually...

Hi, Before we start just a big thank you to the now over 1000 hits on the blog.  Glad you stop by.

Okay, now take a look at this:

This is my brain, or the back half anyway, courtesy of my most recent MRI at Samaritan Hospital in Troy, NY (props for the hometown!).  In the previous blog I wrote about using reiki to help some of my bipolar symptoms, and to dig around at the sadness tearing me apart.  I said that I'd stopped using reiki as a treatment once the MS made itself known, as the person helping me at that time touched the back of my head in a normal reiki matter, that generated nights of terror in my brain.  The reason I have got the picture here is to show you the physical reasons.  Look about one inch to the right of center of the picture.  See that little white dot?  That's an MS lesion.  Also looking down toward the right hand corner of the picture, you see a small .indentation in the outline of the head.  See that?  (You know I wish Blogger had more little tools to use, like a pointer, or an arrow.) That's where a reiki user places his or her fingers to send healing through that area.  Reiki + lesion = Bad thing.  At least for me.

My neuro as noted told me I had 50-100 lesions in my brain.  One of them just showed up right there in the picture (at the very tip of the occipital lobe), and perhaps there's another near where my eyes take in light and sight (also in the occipital lobe) and that ones playing around, too, whiuch may be why light is so bright and color so brilliant.

Here's a brain diagram so you can see the whole thing:

 

 

Brains are normally not this colorful. Ask any zombie, though that's hard as they don't say much except "naaaaaghhhhhhh", and if you're close enough to ask, you're close enough to be eaten. 

 

I'm not a doctor, I just got the disease(s), and I'm just trying to deal with them.  But it did get me thinking.  If a person is trying to help heal your body by laying her/his hands on you, using prayer or not, or just being open to the universe to bring that energy to you, and you think this will help you as you take that energy in, no matter what you think of it, doesn't get one to ponder that there is Something Else?

 

My body is breaking down.  My brain is full of lesions and chemical imbalances that only handfuls of pills can keep straight.  My mind, however, the real me, is having a great time taking this all in, watching this, writing it down and sharing it with you.  As long as the hands keep working, of course.

 

So there's me (Tom the guy), and there's Me.  Want to try it yourself? Think of a favorite movie, or TV show. Now close your eyes and watch it in your private movie theater.  Your order goes out to the hippocampus in the brain where "memories" are stored and the movie starts, and it seems like you can see it on the inside of the middle of your forehead.  That's where you go to see the film. Your private movie theater. Popcorn?

 

What we're dealing with is a three way battle. Your body, the brain, and You (what a Buddhist might call your mind, or others faiths call your soul).  The three of you have to get along for about 70-75 years or more if you're lucky.  Then the body dies, the brain stops functioning, and You, well, that's up to whatever belief system you may ascribe to.  But you are seperate from your brain and body. You can receive, from Some Source, healing. Perhaps you become that healing energy.  I don't know.

 

You would think that once the body is attacked by disease, that the three parts (body,brain and Me) would rally, and this happens sometimes.  There's a lady in my physical therapy class whose come back from stage 4 cancer...twice.  But with diseases like MS and bipolar disorder, the brain kind of flies off by itself and plots with the diseases against the body, and all You can do is remain vigilant as you watch yourself do dumb things, or do nothing at all.

 

It always will come down to the Me in You.  Pills help, therapy helps, support networks help. But it's still up to the Me in You.  That's who takes command. Stand up. Move. Therapy. Laugh. Hug. Live.

 

You can spread that energy (whatever you got left) from (whatever) Some Source to others.  You don't need reiki, a smile will do for a start.

 

More to come.  Thanks for reading.

 

 



Eyes of the World

It's morning on September 11, 2012.  I'm sitting at the kitchen table, listening to Bob Dylan's newest album, just released today.  Outside its a beautiful blue sky, in the background of the pine trees, and other plants man or nature provided, all green.  My car , the big white elephant, in the driveway and its awaiting yet another adventure.  There's a grey gas meter near the side of the garage attached by a red pipe into the side wall (burgundy).  To the gas meter's left is its cohort, the electric meter, painted a quiet brown, except for its tell all face, a dance of dials.  A small cable router sits in the electric box's shadow, pedestrian grey, not even the challenging colorof the gas meter, but from its innards dangle wires of orange and black that dig into the ground and are hidden by the black mulch, used to cover a multitude of poorly planted sins.

I love the color.

The MS is getting to my eyes.  Now its nowhere near blindness, and I'm not sure what category it goes, but I can tell you this.  Color is more powerful. And light, both inside and outside, has been turned down and away from.  It just hurts.

Last week the water maintenance classes started up for the fall season.  What that means for me is I get a corner of the nice warm pool and I exercise using all kinds of devices for one hour.  What I've always enjoyed more is seeing other folks in the pool struggling, some a lot more than me, but making the best of it all.  They are ably handled by the physical therapist, Ms. Y.

I bring up Ms. Y because, while doctors have come and gone, she has stayed.  She was my physical therapist right after my diagnosis, and we established the exercise regimens I do most days.  One area we talked about was Reiki.  The International Center for Reiki Training defines Reiki as:   

     

   "Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by "laying on hands" and is based on the idea that an unseen "life force energy" flows through us and is what causes us to be alive."

 



I can attest that Reiki does have some benefit.  During my "just bipolar" era, an experienced Reiki Master took me through some tough times, leaving me one time a crying helpless slug.  But it had been the first time I had cried, I mean really cried, not the tender tear he-man wipe, but blubbering away since my dog died in 1976.  And then I felt better.  Some of the monsters within were dispensed with, but not all.  They are still here, but know where the closet is.

I studied Reiki with that Master for some years and became  Reiki level II.  I could use my hands  to heal, and did. Then MS came, and so did the lesions and the Reiki went away, or as I like to say, the Reiki is helping with the MS, the spirit of healing is busy just  keeping me up and moving.  So now I try and help other ways.

All right, back to Ms. Y.  We decided to try and see how Reiki handled MS and it took only a few sessions to see that MS didn't give two hoots about Reiki.  It did its "I am incurable neurological disease (with moves like Jagger)" strut.  We abandoned the idea, though please consider Reiki as an option.  Remember there 500,000 different MS cases in the USA, and what did not work for me may work for you. 

Here's the interesting part.  While visiting with my new neurologist, I looked at my MRIs on a far better computer than Albany Med.  He told me there may be anywhere from 50-100 lesions in my brain, and one is sitting....

 

right in the temporal lobe, the area that handles or has a part in dream development.  That's a whole other blog column.  Anyway, certain neurotransmitters become involved in the sleep/dream cycle, and Reiki can stimulate blood flow and other healing agents, and when you put the two of them together on a guy with MS, you get a chain reaction that results in darker dreams that Stephen King (as proved by this one person writing a blog so take it as gospel truth).  Ms. Y placed her healing hands right on the edge of the back of my skull (temporal), and left them there for about five minutes.  And something got the message inside.

 

Result: Nightmares galore and an admonition that we could leave that particular area alone next time.  We did and the nightmares faded.  Reiki itself was over.

 

Sometime we'll get to other non-medical (so called) treatments.

 

Meantime, any lesions that have settled into the Occipital area of my brain are diddling with my eyesight.  There's a small optometrist in there going "Is it better this way or that way? A or B? Does the green appear brighter? Good, it'll stay that way, or maybe we'll just turn it off."

 

Always something.  But I do appreciate the beauty of the colors.

 

Next: Meet the mind!

 

Thanks for reading. The blogspot counter notes that we're heading to 1000 visits, and I do appreciate it. Hope this is enjoyable. 

 



The new normal

Yesterday my wife and I had planned a trip up to Vermont to go to a blues festival to be held at the fabulous Calvin Coolidge birthplace historic site.  Every time I go there, and see the vistas and feel the peace there in that little village and I wonder why Calvin ever left.  But 16 hour days on a farm plowing and taking care of the animals might wear on anyone.  He had a stirring in him, one that got him to college, law school, political office and the Presidency.

I'm not sure if Calvin ever heard the blues, but he certainly knew it when his son died while the Coolidges were still in the White House.  "All the joy went out of the Presidency," he said.  So he made not have heard it, but he knew it.  And maybe when he died a few years after leaving office he was hearing the blues of a whole nation, suffering its own Depression, something he thought might come, but knew he could not stop or prevent.  Not the government's job. 

". . . I feel I no longer fit in with these times." he said to a friend.

Calvin could not get used to the new normal, so he got out of the way.

And it would have been great to see the place again, but here's the thing, I've got my own new normal.  We made it to Queensbury, had a great breakfast and I went out to the car to wait for Jackie while she powdered her nose.  By the time she returned, my brain had turned to mush, a rush of total exhaustion had come over me, and I wanted to go home.  Jackie could see it on my face.

"How about a Lake George boat ride?" I asked



We compromised on a boat ride, one hour and it was nice to be out on the water.  A quick walk (its always a quick walk now) around the t-shirt shops and home to watch the ball games,  and I closed my eyes and two hours disappeared.

This is the new normal.  Plans are made to be changed.  We started talking on the boat ride about our upcoming trip to Disney World in October, and what we would do.  We'll be there five days and expect to not move very far on at least two.  Do a park, sit a day.  Try a walker? We'll see.  I've spoken about this trip already, so more on Disney another time.

But it reflects the new normal.  Plan for something, and it won't happen.  New drugs from new sources, old drugs gone, different doctors, but it still comes down to each of the 500,000 of us in the USA and how we feel the moment we open our eyes.  What's the new normal for that day?

There was a great article in The Atlantic - "Hurtful and Beautiful" by Alice G. Walton a few weeks back which talks about the gradual movement of her normal life toward disability.  A poet, she lives in her mind and can express thoughts that reflect how nothing is disabled in her soul.

Ms. Walton has RRMS and has relapses. As a PPMS person, it just goes along for me, the slow role down the hill.  My normal changes gradually, at its own pace, and the best we both can do is fight on.

Calvin had some thoughts on battling through things:

 



Thanks, Calvin, maybe next year. (It could happen).

Tomorrow another meeting with my psychiatrist. More to come.  Thanks for reading.