Profound Words of Wisdom

Don't complain that you have to go to work - be thankful that you can go to work - Sarah Osborne Bugg.

No she wasn't talking about be thankful that you have a job.  Rather - upon our 50th birthdays (hers a few days before mine) she was sharing words of wisdom from her mother.

Her mother was a woman who was thrilled to be able to see 50.  She had been fighting a terminal illness for near to a decade.  She lost the fight a few years after her 50th birthday.

But this isn't about terminal illnesses and the losses they cause.  This is about the ability to work.  See Sarah's mother couldn't work.  She was disabled.

She missed work.  She missed going to work.  She missed being productive.  Heck she missed going out.

That's something I often forget with Jon.  Since he cannot drive anymore and honestly it's just not safe for him to wander about without me, he's trapped.  Trapped in the house.  Trapped in the car with me driving.  Trapped with my decisions.

Thankfully he loves me or else it could be a quick road to resentment.  I cannot say I would handle it better.  Hell I know I wouldn't.  Being perfectly honest, I would probably take out my frustrations - and yes envy - on him.

That would be envy of freedom, of mobility, of choice.

He had an awesome career as a data base administrator.  He could program SQL and COBOL and make databases dance and sing.

Now he greets me in the mornings and watches me get ready for work - my mundane little job make sure people get paid.  He watches TV and reads and watches YouTube on the computer and naps until I get home.  Then he greets me and often has to hear about my horrible day --- probably thinking You Bitch at least you get to get out and DO SOMETHING.

ok knowing Jon he's not thinking anything of the sort but I bet it is still a bit bittersweet to hear about my struggles throughout the day ....

So for today - on this day after our 11th anniversary (and in his 2nd year of full disability) I will try and remember those words of wisdom that Sarah Osborne Bugg shared with me courtesy of her mother.....

Don't complain that you have to go to work - be thankful that you can go to work

***
the photo above was taken last year in Virginia Beach.  Jon was watching the rain .... and quite possibly remembering the times we walked the beaches in rain -- or shine -- and just cannot anymore.  Yet you can still see the smile.  That's facing life with grace and wisdom and integrity and peaceful acceptance.  Oh I wish I could say I would be that amazing ... I know I wouldn't.

Harold's idea of Feng Shui

I've mentioned before the maximization of empty space.  It's not for esthetic value.  It's not for traditional Feng Shui, it's simply a necessity with Parkinsons.

However Jon's chair.  OMG the CHAIR. It's big.  It's bulky.  It doesn't really fit anywhere.  If our cable hookups were on an interior wall it would work and work beautifully.  However as Harold gently reminded me, it's not about me.

So I lost the coffee table.  Just no flow-through with it.  The chair is the perfect place to Jon to get into and out of and meander about.  It works well where it is even if it's a bit, well, out in the living space.  We still have spaces for him to safely move from one area to the other.

Feng-ing the Shui - our way I guess.

of course that also meant we needed to rethink the tv stand.  one is on order with amazon - i believe i need power tools and of course a TON of patience.

I cannot take credit for the photo.  It came from www.decoist.com  A nifty site about balance and beauty.

A goodbye to our old home

I flew back Thursday night to pick up the Jeep, drop off the keys, and drive the jeep back to Lexington.  Harold wouldn't let me say goodbye without one final photo - yes that's my Harold.

It was an awesome house for the time.  As Jon's Parkinson's progressed, the very things we loved:  the huge windows in the stairway, the stepdown living room, etc proved problematic.  It was time.  It was time to say goodbye and hope my lovely realtor can shortsell the home for us.  I hope another family finds it as lovely warm and opening space as we did.

Speaking of said realtor - she was able to make a great trip to Paris so I didn't get to see her.  I was a wee bit jealous then I remembered just how much I hate traveling.  The trip to get the jeep cemented that.

I worked all day Thursday then drove to the airport (a scant 15 minute drive).  I had to fly to SC to get to DC - sadly you cannot fly out of Lexington to BWI - my airport of choice.

By the second flight I just wanted to be back somewhere where I could lay down.  That was before the cab ride out of DC - a very pricey ride but well worth it for one who refuses to drive in that maze of messed up roads and confused drivers.

We finally got to Laurel to Em's house to pick up the jeep (where she had graciously been keeping it for me).  She also graciously offered to let me stay at her house as she is out of town on a cruise.  I opened the door and immediately her BatCat came running thinking I was Mama.  Then every noise I made here he'd come wanting her.  He was so upset that I left the key, locked the door, and drove to find a motel room.  Poor kitty.

Then the next morning came the 9 hour drive.  Well it was supposed to be 9 hours.  However I had storm fronts near the entire way which not only slowed me down but blew my gas mileage completely out the window.  Then on I68 in WV there was an accident that shut down both sides of the interstate.  I started to grumble then heard up the line that lifewatch had been called in.  Here I was in a reasonably comfy vehicle, ac, enough money to get a hotel room if I was running too late and thinking of myself instead of the poor people who were in the accident.  Harold slapped my hand but good over that one.

After about an hour we were back on the road only to run into thunderstorms most of the rest of the way.

Did I mention I really hate traveling?

By the time I got home I was so sore and so tired all I could think of was pizza and bed.  But that would have been rude to the happy welcoming committee that all wanted me to reassure them I wouldn't leave again.  From cats to bird to Jon they hovered and followed ... I think they miss me.

Home is definitely where the heart is.  My heart is here with my loving husband and affectionate creatures.  While I often long to explore, I believe I'll leave my exploring to short trips and via the internets.

I took the photo above on Thursday.  Somehow - to me - the place looks sad without us.  however my heart is truly in Lexington now.

Lexington? how did we get here?

Off to a new journey - that of a re-transplanted flatlander.

As you know I've lived in Virginia, Oklahoma, Kansas, Louisiana, Washington State, and now Kentucky.  The work path, Parkinson's path, and other forces converged to where Jon and I (and of course Harold) relocated for work....to Lexington KY.

A state in which I've never lived and only rode through when I was very young when Mom decided to leave Virginia for Kansas.

We also went from being homeowners to apartment dwellers - yet another change.  The Parkinsons has gotten to the point that stairs became problematic for Jon.  So now the only sort of 'step' we have is the curb.  This is a good thing.

We also live within minutes - less than 5 mostly - from most things we need.  This gets him out and about more.  He is loving the Krogers that is literally about 2 minutes from the apartment.

How did this all come about?  Well during Harold's silence (Citalopram - forgot the brand name - tends to stifle the muse so he was in hiding), I took a job in Rockville.  That company was purchased by the company where I now work.  My new supervisor wanted me in Lexington, Jon and I spoke about it, and decided it was Thundercats GO.  No we didn't consult the cats.  Or the bird.  Actually she's very lucky I didn't rehome her - I almost did.  However things converged and the community where we had the most interest allows birds not counted as a pet.  Therefore we could keep both cats and the bird.

Harold however is itching for the camera.  Everything here is so green.  Everything here is so ... pastorale for lack of a better spelled word.  Actually he has been fascinated with the changing light on the trees out on our front porch - the photo above.

Just wait til I take him on the walking trails.  I'm hoping Jon can join us - with Parkinsons it's not one day at a time but literally one hour at a time -- as we found out at Target on Saturday when his body rebelled without warning or reason.

One day at a time.  One hour at a time.  One minute at a time.  Tough for a consummate planner such as myself.

However, as Harold often reminds me - I adapt.  I may kick and scream but I will adapt.

...and yes so will my muse.  He's already eyeing the canine traffic out the back patio .......

The photo above was taken from my front porch a few days ago.  It really is beautiful and quiet here.

2013 - a new year - a new beginning

ok I was kidding about the new beginning except I miss taking photos.  I've bemoaned the last couple of years that Harold hasn't had his camera in hand but a rare few times --- and sadly those have been photos of other people and while fabulous (IMHO) I respect their privacy.

In fact I have one of the best photos of a very good friend that I've EVER taken.

The scales of time - they tend to balance when we're not looking.  For the longest time, Jon was the driving force in our marriage here in Maryland.  He had the great job, the confidence, the power if you will.  Now he is disabled.  While a great many men would bemoan the circumstance and quite probably take it out on their partner, he doesn't.  He throws his skills, his experiences, his drive, behind ME.

IKR?

brb - Parkinsons' ugly head - he's standing on his pants and in a bit of a quandry.

ok I'm back.  Crisis averted.

I found this year for the first time being off Christmas Eve AND Christmas Day and New Years Eve AND New Years Day. While yes I did work part of those days from home - WOW - I didn't have to go to work.

....and that leads to the photo above from the Snowpocalypse.  Not only would I not have to work if that situation arose again, I would not be punished for NOT working.

Jon kept saying if I paid my dues, paid it forward as it were, then good things would happen.

As usual, I think he's right.

though I wouldn't let him know that ;)

Irony - ain't it a blast?

Wendy's - yeah gotta love it.

But onto the irony.  As the fates would have it, we found out around 10 a.m. Friday that Friday (that Friday) would be Jon's last day.  His disability starts Monday.  It was either that or take a demotion/pay cut on Tuesday.  It was a no-brainer and his team lead was very supportive of his decision.

We made plans this weekend to just stay home and heal.  Neither of us felt particularly outgoing given the circumstances.  We're thinking of things Jon can do to keep him from being too bored until he settles into a lesser level of activity.

Enter the irony.  His computer broke.  OK, yes it's an older one.  When I started having to bring work home all the time, we purchased me a new laptop with imbedded 10-key and he took my old one.  It's been not wanting to charge for a while now; picky, finicky, and just plain stubborn.

So thankfully we have the Dell credit and for 20.00/month, we have a replacement one coming for Jon.  He only has to limp long (all puns intended) for a week without it and using mine if he chooses.

Life.  It's funny no?  It's preferrable to the alternative - or so I've heard.

We're still making decisions on whether to hit his 401K and pay off the smaller bills leaving only the utilities, car payment (thankfully paid off next year) and house payment.  Sadly, we shall be selling Baby - my 2002 Jeep Wrangler.  She has 100K miles and honestly, Jon cannot even ride in it anymore, let alone drive it.  Sad because she was the first brand new car I ever picked and paid for.  Then again, she's a bit of a gas hog and his malibu - while I don't care for it - is more commuter friendly.

Sucks being an adult don't it?

I took that photo earlier this year.  He's not hiding his face - he's gathering balance to get up and out of the car.  If fortunes allow, when it comes time to trade in the Malibu, we shall look for a small sized SUV which is large enough for him to comfortably ride in yet small enough not to be a gas hog.  They're easier for him to get into/out of.

extra garlic - tabasco optional

Two random thoughts:

I prefer spicy and savory over sweet
This photo - while not spicy - speaks to me of the relationship between fluid and stationary.

Jon has a meeting today with HR to discuss going on full time medical disability.  It's time.  His work is suffering and his health is suffering.

Still - it's sort of an end of an era.  We knew it was coming but wanted to put it off - and thus embrace the semblence of normalcy - as long as possible.

It's just no longer possible.

Harold - and the changing of the seasons - have helped keep my sanity of late.  Whenever I want to crawl in my dark black hole and hide from events that have overtaken, Harold spots a tree or a bird and I can see the wonder in creation.  That allows time for my type-A overplanning brain to take a break and for me to take a breath.

Amongst the other issues that are more than obvious, is the loss of sense of self that retired persons can face. Jon feels like he's let me down, so I spend an enormous amount of time building him up - his self-esteem, his sense of worth.  It's tough.  It's tougher for him though.

However, as I often remind him - We Are Together.  THAT is what counts.

This weekend we shall wander about The Grove and celebrate being together.  October 15th it will be 10 years since I moved out here.  I wouldn't trade it for anything.

A series of partially related thoughts:

subtitled One Too Many Blogs

I took that picture last year of Mom's roses. She insisted we simply MUST have tea roses in front of the house. I'm not exactly a rose person. However I caved and we planted them. When she fell ill in January and into February, I made mention that I hoped she'd be able to see them bloom this year. She didn't make it that long. I'm still sorting out the mess she had made with her name (and the multiple name changes), with some property she sold on contract, and the lack of a will. She is still currently residing on her dresser in her old room because no action feels quite right: everything I consider doing with her ashes seems wrong. I guess when in doubt do nothing eh? Sometimes that is the best solution. Other times .....

We recently had to do a medication change for Jon. He and the Mirapex had MAJOR issues. Ignoring it did not make it go away either. I blogged about it on Life's Little Ironies - I won't go into it here except to say thank goodness that part is partially fixed. Now to wait on a fix for Parkinsons.

Speaking of Life's Little Ironies - Wordpress currently apprears to be my main blog. I had it hidden for a while but then decided why not eh? I still cannot quite get back on the social networking merry-go-round. I try and try and it just seems like too much work. Actually quite a bit of life seems like too much.

Which leads me to this: unless I feel markedly better in the next few weeks, I think I will visit my physician regarding anti-depressants. Actually I've had clinical depression before. This doesn't feel like it. This feels more like the PTSD (Post Traumatic Stress Disorder) I had back in 1991 only I don't freak when it rains. It just feels like everyone is moving 100 mph and I'm moving about 35 and I wake up in the middle of the night with my mind racing over all the things that simply must be done. However I can't link this feeling to one event. Then again there's been quite a lot of chaos in my life in the last 6 months from Mom's stroke, illness, cancer diagnosis and death to Jon's Parkinson's diagnosis, to issues with his mother's estate ... it definitely hasn't been quiet and calm.

Which leads me back full circle to Mother's roses. We lost one of them. Sort of symbolic yes? I will replant with a red one - she would've liked that.

Photo above was taken just before the April snowstorm 2007

Staking my claim

I am hereby reclaiming my life.

I cannot choose how others act but I can choose how I re-act to their actions.

I cannot always choose the circumstances, but I can choose to adapt to them.

I have the power over how I feel.

*******
I've been slacking off recently, not going to the gym and not watching what I eat, all in the guise of "well I've been depressed." Guess what? That's Bullshit. Yes some things have happened recently. Some of them have been posted here. Some have been posted elsewhere. Some just conveyed quietly to friends. Still other things I have been quietly attempting to deal with on my own.

So yes it sucks - majorly - many of the things that have happened in the last few years. However, I have my health, I have my job, and dammit I have my choices.

Henceforth, I will be responsible for myself and my choices.

I choose:

• To watch what I eat, when I eat and more importantly what I eat
• To excercise with some semblence of regularity because it makes ME feel good
• To attempt to learn a new task or skill each day
• To live without the actions of other affecting my behaviour
• To live without fear or regret
• To understand that Jon's disease is just that - his disease and his responsibility
• To focus on the positive
• To understand each new day is just that - a new day; a new beginning.

So that's that. Sometimes it just has to be said. Sometimes it has to be read.
Sometimes it just has to be.
*****
I took the photo above last year in Washington. The city squirrels are afraid of nothing. That chutzpah is something I rather admire. Perhaps I should take a page from their book eh?

Can you hear me now?

I just posted a comment on a friend's blog about dubbing and subtitles. I matter-of-fact stated that since I tend to have the television on closed captioning much of the time, I do better with subtitles.

I never dreamed it would come to this in my mid 40s though. Wait - not even mid 40s.

As I sit here this morning, listening to the ever increasing ringing in my ears (tinnitus), I'm reminded I've gotten quite good at little tricks and things to mostly keep this from everyone but Jon. Poor Jon -- the Parkinson's and the Parkinson's drugs tend to affect his speech. Sometimes I need sharp clear annunciation (with clear facial movements) to understand. Unfortunately, now he slurs ocassionally and his facial movements sometimes are a little soft and sluggish.

Can you hear me now?

In the chaos that tends to be my life, I have to laugh at the oddity. I have an IPod that I just received but haven't set up yet. Me - who lives in music - yet it sets nearly blank.

What if it's like my hands free cell phone feature? what if either I can't hear it or it causes pain when I can get it loud enough to hear.

Wouldn't life be wonderful if music could be closed captioned instead of just little music notes and an announcement that it *is* music?

Wouldn't it be the best if the fates didn't have a wicked sense of humour?

***

The photo above was taken summer 2006 @ The Virginia Renaissance Festival. Gary Schwartz is a gifted musician/composer who specializes in period music.

Adjustments

Isn't it amazing what a month can bring? It's been near to a month since the diagnosis. Since then I've learned more about Parkinson's than I ever wanted and still know basically nothing.

• I now know that you cannot get life insurance with a diagnosis of Parkinsons.


• I now know that you cannot get long term care insurance with that diagnosis (ok I predicted that one).


• I now know that protein levels are important. Protein often makes the medications wear off too soon. Therefore we juggle when proteins are consumed.


• I now know that this illness (whether the illness itself or more likely the medications) *can* affect the immune system. However the neurologist seems unconcerned over the fact that there is also history of asthma.


• I now know that even though many strides are being made, not all treatments work for all patients and most things only work for a short time (in the grand scheme of long term maintenance medication).

Plans - more plans, fewer plans, what to choose to do and what not to choose.

• I am picking up my health insurance at work just in case because then preexisting conditions don't come into play.


• I am trying to estimate what we should invest in the house figuring that we will probably have to move to single level in 5-7 years. I hope it's not sooner. I am really hoping for more like 10 years.


• I am researching bus routes and mass transit - again just in case.


• I am a frequent visitor to michaeljfox.org because sometimes I have to take a break from the multitude of information out there. Small doses.


• I am not sleeping. I plan even in my dreams. Plans that change, alter, rearrange in hopes of finding the best possible solution.

However - I *am* coping.

Yes the *I* word is all over this blog. He has his own blog he can blog about what he wants to blog about. This one is mine.

the picture above is just a rainy photo from out my front door taken sometime in 2006

Whine Whimper

bitch moan complain

I blame the cosmos

So I was doing a weekend roundup (yeeehawwww) of just what has gone on in the last 3 weeks and here it goes:

*Mom rushed to the hospital probable stroke
*Jon has Parkinsons
*Mom has emergency tooth extraction
*Jon discovers issues with his Mom's estate
*Mom emergency doctor's appointment (false alarm)
*My oral surgery (and the rather disgusting lisp I have obtained)
*Mom's insurance really screwwed up ('nuff said on that one)

This is just since the first week in October. Is there a wonder I'm not sleeping at night?

Yes I know it will get better...it HAS to.

I am finding a rather macabe sense of humour about the entire situation - I just tell people that clowns are the least of my concerns.

heh

An unusual state of mind

Or should that be an unusual state of mine?

I all but closed my main blog on 360. I felt I needed to focus my attention and time on Jon. Also, I found it quite difficult to blog to readers about anything when the thing in the forefront of my mind still is his condition and how we're coping.

I still cry when I talk about it.

...but I digress.

Anyway, I got a few unhappy people after I removed all but 13 (including my alternate) from my friends list and locked my blog and quickies to friends only. I did that so that when Jon is comfortable talking about what is wrong (if ever) I will have that blog for moral support as it were.


I know there will be a parallel drawn for many but to me it's not the same. Either way that is the way it is pretty much. Mine is a choice for a different reason: currently that diagnosis affects literally everything I think about. I am a plan for the future kinda gal. I'm finding myself rethinking EVERYTHING.

I hope this too passes with time.

I hope the driving desire to go to ground like a small wounded animal also passes with time.

I hope one day the tears pass.

I hope one day the tears cease because I've come to grips with this - not because there are literally no more tears left to shed.

Johnny Depp at 2:30 in the blessed a.m.?

ok anytime is a good time for Johnny Depp *weg*

So you might ask what I'm doing awake at 2:30 in the a.m. - drinking beer and eating pizza - watching Johnny Depp - the same 2:30 in the blessed a.m. that is the 2nd to the last day of faire - the same faire I look forward to each and every year.

You could ask.

It would appear that as soon as my husband left Mom alone for a moment yesterday, she ran and called her physician to schedule an emergency doctors appointment. Was it for yesterday? oh nay nay

For today. At 9 a.m.

Her prescriptions are scheduled to be picked up @ 5 p.m. Yesterday? nay nay

Today.

Saturday.

The 2nd to the last day of MDRF - the last WEEKEND of MDRF.

I set and look at my bodice knowing it won't be worn. I look at the DOW dress I borrowed knowing more than likely it will not be worn either.

I bemoan the fact that pictures weren't taken this year.

I know that each day, each month, each moment that passes, Jon's condition worsens. I wonder what will happen if this *was* his last year at faire?

I wonder how I will forgive the self-important drama queen if she's robbed me of a last season with my husband. She has currently kabashed any out of town trips and vacations. She has dictated - by her actions - where we dare to go and when we dare not. We have missed many days this season.

I only hope - for her sake - that there are many more seasons ahead.

Each day is a gift. Each day should be lived - not served.

I am currently serving - not living.

at least Johnny Depp is still cute

Little did I realize

Yes ok I'm a bit oblivious at times. Everyone who knows me knows that. I can remember something so delightfully obscure that people questions its veriest existance and I can totally miss the most obvious of nuances.

Call it a gift.

Little did I realize when *something* - one of those somethings that I always listen to and invaribly regret when I do not - when that same something told me "keep blogger private" that it was speaking for a very important reason.

I'm now glad I listened. One day I might give this address out. I figure if people find me its for a reason. If not then maybe this will avoid some therapy bills eh?

*******

Yeah end of segue

*******

I will thenceforth (is that even a word? Please Stephanie) use this blog for the very things I need to get out but cannot due to privacy issues. Job. Family.

Jon.

Parkinsons.

It still gives me chills and brings tears to my eyes to write both of those words on the same page.

Jon. Parkinsons.

The symptoms were there but the very obliviousness that I think helped me survive my childhood sadly enabled me to ignore the most commonplace things: he had a tremor and stiffness both. Parkinsons. He got tired and shook more. Parkinsons. Difficulty swallowing. Parkinsons. Difficulty walking and balance.

Parkinsons.

The most obnoxious facet of this disease is you can't diagnose it. It's basically what's wrong when everything else has been ruled out. Well it's not a brain tumor, it's not a stroke, it's not Bells Palsy, it's not Dropsy or epilepsy or anything else so it's Parkinsons.

Part of me is so very angry because I actually *did* think this is what it was so many times. However we didn't plan quite right and got a diagnosis without getting life insurance first (can't now) or long term care insurance (nope to that one too) -- in essence it's like this disease has turned my life upside down without even asking me - and I'm not even the one afflicted.

OK yes that's childish and in truth I *am* going through the stages of grief (it appears I'm at anger at this point) even though he's still quite alive and will be (god willing) for a loooong time.

I am simply mourning my dreams.

Dreams of *us*

Dreams of old age and rocking chairs and peace instead of dreams as once again I will become a caregiver except it will be to one of the most important people in my life.

What if I don't have the patience?

What if I don't still have the skills?

What if I just can't?


The hardest part is I *need* to talk but he's not ready to. Not yet.

So I wait. And write. And watch.

A silent vigil begins, begging to rally against the fates when it's just one of those things that just happens.

One of those things that I just can't fix.