We got a new toilet and all is well....

Back up on the high part of the rollercoaster.

We got back from the Vets Hospital where we spent the day with the neurologist (Ann), the social worker (Tammy), the dietitian (Dan), three occupational therapists (hmmm.... can't remember names) and a speech pathologist (Bo).

It's been a long day but a really good one.

First, being at the VA was motivating.  All of the people who assist patients in wheelchairs, bring patients to the bathroom - maybe what you'd call a candy-striper - were all volunteer veterans.  How cool.  And how inspiring to see people who've already put in their time and service, putting in more time to continue helping vets.  It was great.  It cleared my head.

Second, everyone at the VA listed above were awesome.  It was above and beyond.  We felt well taken care of and know there's a place to turn with questions.  It was nice to be asked how I felt, if I needed help. I know it's a small thing compared to what Luther's experiencing but it was good.

We're signed up for a home visit to help retro fit the townhouse, Luther has another visit to the speech guy to learn about speech recognition software since he can't type anymore.  He has a driving evaluation set up so he can learn about tools to adapt his car so he can continue driving.   Lots more stuff to do:  adaptive silverware, exercise programs tailored for him.  Best of all:  they ordered him a new toilet - a bidet - so that whole weird issue of not being able to reach is solved.

It's been a good day.

If you can't say anything nice....

I haven't written anything because I've been feeling like the rollercoaster ride is too much to talk about.  One day, grateful, the next day ______________  fill in the blank with any negative adjective... sad, angry, tired.

This is my life.  I have to accept it and figure it out.  I've been saying this for the last two months but the feeling of ____________ fill in the blank doesn't go away.

Luther has to figure out his energy management.  I guess I have to figure out mine, too.

I need help.  I see a therapist and that's ok.  It helps me see clear for about 45 minutes each Friday.  I'm not sure what "help" actually means.  Maybe that's a therapy topic?  Trying to figure out what it is I actually need to alleviate these feelings.  I really don't know.

At times, I'm not sure I can do this.  I wonder if Luther think the same and yet, he has no choice.  I do.

Anyways, we're off the the VA hospital today since that's where his health care is being transferred.

I have to go, Luther wants breakfast.  He's sitting in the dark, waiting for me.

I have a good life. Tuesday night rambling...

I get pretty scared and over-anxious a lot.  But I've done this all my life.  Worry about things that haven't happened and might never happen.  Which sometimes keep me stuck in the present.  At times, it's a roller coaster ride of highs:  I can do this!  I have a great support system!  And then lows:   I'll never be able to do this.  It's too much.

Achieving that balance is something we all strive for.   I hate roller coasters.  I like calm waters, a gliding canoe ride is just fine with me.  We paddle a little.  We get from point A to B.  The canoe might tip, but that's why we have life jackets.

Amidst talk of life insurance for terminally ill people, the scare of last night's fall, an uncertain future, I know I have a good life.  I have love, I have support, I have faith, I have so much.  I know this and it's my life jacket and it's an amazing feeling.  It gives me balance.

My boyfriend fell down

Got home late from work, like midnight. Long story... about every three months I get in these weird grooves and work like a crazy woman.  Which is... crazy.

Luther hasn't really fallen down (other than the slip in the shower) yet.  He's lost his balance a couple times but it's sort of like how you and I would slip a little.  Nothing major.

I went upstairs to grab pj's, hoping I didn't wake him up but I had.  The first thing he told me was he'd fallen down and fell in to the fridge.  Since it was the first thing he told me, I knew it was a big deal; he never really mentions anything that could remotely worry me.  He must've cut his hand, he said it was bloody.  I asked if he needed me to look at anything?  "Only if you want to see it" was his reply.    No - go back to sleep...

I know I can't be here all the time.  But I should've been here.  It scares me.

Life is changing.  Priorities shifting.  I felt in limbo, unsure about what to do next.  And then tonight, my boyfriend fell down and I wasn't here.

click this link: https://www.youtube.com/watch?v=6i6-5_tVgfA

Robot heart

Therapy yesterday.

Night out with friends that became a therapy session in itself.

Today I became a robot and felt the protective wall coming up. Unfortunately, this wall get super thick, closes up really tight.

The therapist said it's ok to have a wall.  We all need it in some way or another.  But I feel myself pulling away.  Getting mad at everything.  Wait, robots don't get mad.  I feel more... apathy.  Is apathy a feeling?

I feel like every single decision - every single one - is in my hands.  Whether it's what we're having for dinner, the fact my tire is flat and I don't know what to do about it, how I get Luther's pants fixed so they don't fall off, how do I get my sales up at my store, I really don't actually have a day off because all my days off are spent with Luther or with some form of the illness... I work a long day and I come home and need to do everything, every thing because that's just how it is.

I know.  I know.... there are worse things. But this is my thing.

I put on my robot shield, I put the emotions away, I protect my heart so I don't feel and that way, I can get stuff done.

Forever love, one day at a time

This was a comment left on one of the posts.  It's from a friend of my parents.  It's sweet and touching and a reminder that each of us faces challenges every day.  It's how we choose to deal with the challenges that matter.

Jim NJanuary 19, 2014 at 7:56 PM

I hope you two got to the south and the sunshine. It is a whole bunch easier walking in the sun if the snow isn't up to your ankle.
Walking is a little challenging for Paula. She is "on my arm" pretty much all the time we are out of the house. It gives me a chance to squeeze in my elbow and remind us both that we are traveling as a pair now-a-days. We had one passerby who didn't speak english make a special effort to say he was glad to see us as a committed couple. That is one thing you two can do. Walk arm in arm and proclaim to all around, that he (she) is mine and I'm proud of the fact.
Don't feel you have to hurry back north. Our snow will last for quite awhile.''

I have had people ask if I was going to leave Luther.  Would I stick with him?  We've been together less than two years (it will be two years in March).  Even he gave me the "out" when he was first diagnosed.

I've thought about it.  It wasn't a serious conversation in my head but the thought crosses my mind at times.  I feel guilty about even having the thoughts but they are there, lurking about.  I think about being 52, how long will the illness last, when will he die, how old will I be when I'm single again?

When I met Luther, I'd been single for a long, long time.  10 years or so.  My friends and family know of my dating adventures.  I was ready to put those adventures away when I met Luther and start a new kind of adventure with him.

I want that forever love.  I want to be with someone as I grow older.  I don't want to be alone again.  And I will be.  I worry I'll be nearing 60 on my next, new dating adventure.  It makes me feel guilty and, frankly, bad when I say this out loud.  I want Luther to be here, dammit!  

I don't often think about my future in these terms.  It is what it is -- none of us has any guarantees. (Oh these cliches!!  They keep coming more true every day.)   These days, I face what's in front of me and shove these kinds of thoughts way way back.  

Luther is my forever love, right now.

Thinking about zingers

Back from vacation - 4 days in Vegas.  It was warm and wonderful.  Flip flops!  Lunch outside.  Seriously, the best potato I've ever eaten.  It's the little things, right?

But I had these moments, a lot of moments, where I was sad, tired, down right pissed.  I feel ungrateful saying this out loud.  My boyfriend, my terrific, handsome, super nice boyfriend bought me this trip for Christmas.

I've been thinking a lot about zingers.  Not those delicious chocolate twinkie like things you can only buy at the gas station.  But the small jabs we take at each other... the passive aggressive way we have of handling our frustration or anxiety or the fact we're pissed off with someone but we don't really want to come out and say it.  Things like, "you're wearing that?  Oh, no, it looks really comfortable."

I was in a zing zone the day we left for Vegas. We walked to the car, my car which doesn't stay in the garage and it was covered in inches of snow.  We forgot it snowed.  I had on cute shoes.  I realized, in that moment (one of so many moments) things aren't the same.  I had to run back down to the house (the garage is detached), put on my winter boots and get ready to shovel and scrape because my guy can't.

While I was down getting my boots, he got in to the warm car and waited for me to shovel us out.  I was pissed.  I had to put the suitcases in the trunk, scrape off the windows, shovel out the car.  It was a lot of work.   Work that we used to do together and now, I have to do alone.

I wanted to zing him.  I had a million things in my head to zing out.  Warm enough?  Want to double check if you forgot anything so I can walk back down to the house?  Let me just finish cleaning out the car, don't mind while I work around you....  I was cold, my sweater got wet, this was not how I wanted to start out the vacation.

But it's how it happened.  I got in to the car, he was quiet.  I slapped a big 'ole smile on my face and said I was so excited we were leaving!  Inside I wasn't excited.  My heart was frowning.  My hands, correctly placed on the wheel at 10 and 2, were gripping the wheel really really tight.  I wanted to let a zing out in the worst, worst way - as if letting it out would lighten my load.  Why is it an automatic reaction to say something shitty to make me feel better?

A funny thing happened -- as I kept smiling, my tension started melting.  We made small talk.  We were on the way to Vegas!   Warm weather, time away from work, nothing to do but eat, hang out.  Being nice made me feel better.  Imagine that.  It was a zing free trip to the airport.

Now, I just had to bury that nagging feeling that this was just the first of many zing moments that I'd be working really hard to turn in to zen moments...