March 2016 Check In

How did I feel this past Month?

A very mixed month with peaks and valleys.  Getting a job and maintaining funding has been consuming.  Some days are great, others less so.  I am fighting the blues. It’s winter so that’s not abnormal. The season distresses me.  My condition makes me housebound more than I’d like.  Also, not having income makes us stay at home – no joy-shopping.  I am in a waiting mode.  It’s never easy for me.  Sometimes, I am a slave to that e-mail, waiting for news, for any movement.

What did you do for yourself this month?

Still with the gym and less so Zumba due to the weather.  I can’t really go out in rain or snow, too much chance of falling.  I have started to write again.  I started journaling in January and am writing in the day.  I have continued to clear clutter.  I am trying to reach out to people/

What did I eat this month  and how did it make me feel

Back mostly to smoothies.  They really help my system and mitigate my sugar cravings.  I created an alert on my phone to remind me to have fruit in the afternoon and my Bac pill.

Did I exercise?  What did I do?  How did it feel

It’s exciting.  I am feeling achy at the gym.  I am taking it as a sign my nerves are reconnecting.  On the flip side, I seem a little less flexible and continue to experience balance problems.

For whom or what are you grateful?  What matters most in life?

My friends. The gift of faith.  I have been playing with “The Power of Positive Thinking” and it has reconnected me to faith.  The love that is in my life.  My stepson brought me the most beautiful rose on Valentine’s, unexpected and lovely.

Do I have a higher purpose or driving force in my life?   Make a mission statement

No surprises.  No mission statement.  Purpose?  Let others benefit by my fight. Integrity.  Principles do count.

Conventional medicine  Just the Ampyra and Baclufan.  Really beginning to get that the right food and rest will do a lot.

Symptoms –  Hands are becoming a problem.  Fighting it of course!  Balance and flexibility which can be addressed with increased determination

What symptoms are most troublesome  – The lack of freedom.  As I write this, the newspaper is in the driveway and I just can’t go out and get it.  My increasing reliance on the cane is hindering me in my job search.

Do I blame myself for things – Of course, between stress, wrong food and not enough exercise

How is stress level?

Still high and who wouldn’t be between money, job and health.  This is becoming my new normal.

What can I do tomorrow to make it better than today?

Remember to breathe. Have faith.  Eat and exercise properly.

Why Did the Chicken Cross the Road?

Why did the chicken cross the road?

Good question.

Right after Thanksgiving, my husband called out to me to come look out the front window.  “There’s something odd out here.  I think it’s a turkey.”

“Really?”  asks I.  This is a man who has had issues in the past. So I gimp out to the front.  I see nothing.  This is not unusual.  I was the child who always finally agreed that she finally saw the constellation or the bride coming out the church door rather than enduring “See?  See?”   I did see JFK on the Belt Parkway though. I am not quick.

“no, no, don’t you see that black thing.”

And there against the fence across the street was a black chicken.

And then, the chicken crossed the road!  Please understand, we live in a suburban area.  The bane of our existence is a used car lot next door to us that houses a massage parlor from time to time.  Across the street on the corner is a former gambling hall.  I was reading news headlines one day at work that the newly discovered bomb plot by either the Gambinos or the Gallos was directed at that building.  The Feds closed that one down.  And wait for it; we had prostitution there, too!  The house that the chicken bolted from we refer to as Sandford and Son.  A  seriously collects junk when he is not “away”.  Also, think from time to time, “junk” is sold from there.  Uh, cars pulling up with engines running and people running in and out?  And the SWAT team was literally there about three years ago.  Police frequent the house (more on that later).  Sometimes, on a weekend we have copter hovering over and doing a sweep.  No, it wasn’t like this when we moved in and who would want to buy this?

Back to the chicken who has crossed the road and is now in our yard.  Now besides the organized and unorganized crime, we also have woods behind us.  So, we have  a fox, opossums, feral cats,  huge raccoons and dogs.  T says “Do you think it belongs across the road?”  It crosses the road and is pecking at the fence.   “yes, why not?”

“Do you think I should go over and tell A?”

Me:  “Yes, I do not want to wake to chicken guts on the front step.”  We feed the ferals and as a consequence birds, raccoons, Fox and possums.  “We do not need to provide gourmet treats for the ‘hood.”

T trundles over and is gone for awhile.

A admits chicken ownership and is stunned that chicken crossed the road.  He has more than one.  It’s a menagerie over there.  In addition to the pitbull that pinned me in the car one day, there is a cat that we feed.  We call him AC for A’s cat.  We discovered this one afternoon when T & A were talking and AC strolled up and ate the food we leave for him.  A says “Oh, my cat never eats dry food at home!”  Uh, why should he, when he eats with us?  There is a macaw and a little dog, too.

So chicken custody determined, the guys begin to chat.  A discloses he’s on probation for DV.  Coincidence!  T just finished.  I did say more on the police later.  If you have been reading me for awhile you may believe that T is a devoted and caring spouse.  He is when he is not drinking.  He’s an alcoholic.  He is not allowed to drink in front of me.  Easier said than done, no?  So, he has been arrested here about 16 times, no joke.  This means police have been here at least 20!  It’s a small block, hidden away.  No one really knows how to get here except for the precinct.  In fact, one night they were over and asked, “Weren’t we here earlier today?”  No, they were across the street.  Fair disclaimer, T ended up in DV because they couldn’t get him on alcohol any other way.  An ADA even told me once, if we could get him in a car.  He has no license so that’s a non-starter.  The DV is the alcoholism.  It distorts people.  The cops who constantly arrested him realized that when sober, he is wonderful.  Over the years, they have liked the work he has done on the house.  “Wow, you redid the floor!”  We have an almost cordial relationship with them.  And we have been to court so often that we are personally greeted, and people look to me for advice.  Luckily, that is all over.

T was on probation for three years and concluded it successfully.  So, he is in a position to advise A and was giving him helpful hints and tips.  We believe it will be the same PO that T had. The first time she came over the house was just after dinner with the kids.  In fact, when there was a knock on the door, we thought one of them had forgotten something.  I had made stuffed pork chops and used rice wine in the stuffing and had sprinkled it because it was dry.  They breathed him and said he was positive.  We later learned that the amount would not have been recognized if he had been driving.  We didn’t know and were terrorized.  They told me that me or the kids would not know if he had been drinking.  So, not right.  We always know.  We have lived with it. And as I said at the time did they really think that having had him arrested so many times I would tolerate it and not call? I was told I could no longer use cooking wine and they made me dump my almost full bottle out.  Then they trashed my house searching for drugs and alcohol.  When they went through my mother’s antique petit-point purse, I lost it.    We have a tortoise shell cat that we took in from outside.  Of course, the cats are freaking out with these strange, hostile people in the house.  Miss Mollie runs out to hide someplace else.  Officer N shouts, “Is that a raccoon?”

Their home visits were fine after that except for the time they came after 10 p.m. when I was getting up at 4 a.m.  They have come over when we have been drinking coffee on a Saturday afternoon or making Easter chocolates!  And we  had no luck coaching Miss Mollie on how to be a raccoon.

Let’s be clear.   I never considered myself a victim, ever.  I called precinct so that I would not be.  Everyone wanted to fit me into a mold just like they do with this disease/condition.  When I work,  I make very good money so I am not dependent on a man.  The house is mine so I can’t be thrown out of it.  I was always being offered help to get a job and find housing.  Where I did feel like a victim was in the hands of probation.  Even though T doesn’t drive or work, he had to be at places that are very difficult to get to without a car.  There were also huge fees that in essence I was hostage to pay.  I was always told I didn’t have to and he would be jailed.  Does this make sense?  I was told I could give him the cash (they only accept cash) and transportation cash.  Uh, especially in the beginning, money was a trigger!  The situation is designed for people to fail and generate revenue for the county.  We had to discontinue our marriage counseling as we were told it was not allowed.  The program he was in was ridiculous and meaningless, no curriculum.  He was told if it was up to them he would not be allowed to live with me.  The people in his “class” terrified both of us.  There was the guy who had thrown his girlfriend out of the car when it was moving and one who said when accused of choking his girlfriend ” But I stopped when she turned blue!”  T successfully concluded the program.

I refuse to be considered a victim with my condition either. I will not conform to people’s expectations.  The child is father of the man.  My mother used to tell me that I conformed to non-conformity.  It’s turned out to be a good thing.  I don’t buy into the whole incurable thing.  As I have said before, I am not going to tout the advantages and delights of motorized scooters.  I hate the spectral leg.  I hate orthopedic looking shoes.  I use funky walking sticks.  And no, I am not going to apply for disability.  I do not walk well.  I am not disabled.  I am able just not as able in certain areas.  By the way when I am working I literally walk or stumble more than the average American! Yes, 8 – 12,000 steps a day.

So, husband is  giving A advice.  This is going to be interesting as I believe she is not as strong as I am and there is a language barrier as well.  And we believe  it will be the same P.O.s that used to come to us.  We would love to be a fly on the wall as they experience the menagerie, chickens included.

Why did the chicken cross the road?  Goes to show that we are more connected than we think.  And the chicken keeps on crossing the road.

 

February 2016 Check In

How did I feel this past Month?

Like I always do.  I fell apart after the main event.  Can I say Babka?  But I have been working out and mostly take care of me.

What did you do for yourself this month?

Gym, Zumba.  Gratitude journal.  Applied for jobs like crazy.  Writing a bit more.

What did I eat this month  and how did it make me feel

Struggling to get back on track.  Still trying to mitigate as the holiday stuff leaves the house.  I started again having a green smoothie practically every day.

Did I exercise?  What did I do?  How did it feel

Definitely more gym this month and started Zumba.  Zumba gives me joy and frustrates me at the same time.  I can do so much less than I used to.

For whom or what are you grateful?  What matters most in life?

Well things are moving along.  I had companies want to talk to me about jobs.  I was able to pay my bills.  I have amazing friends

Do I have a higher purpose or driving force in my life?   Make a mission statement

I guess at the end of the day I want my life to have mattered and changed someone else’s positively

Conventional medicine  Just the Ampyra and Baclufan.  Really beginning to get that the right food and rest will do a lot.

Symptoms – Balance is definitely off and my hands are getting weaker but I am fighting.

What symptoms are most troublesome  – The balance and being confined when there’s snow.  Three years ago I could dig myself out in the driveway.  Now I can’t walk outside.

Do I blame myself for things – Sure.  Still not aggressive and focused enough.  I let this into my life.

How is stress level?

Through the roof.  No job.  Confined to the house.

What can I do tomorrow to make it better than today?

Change the food more and keep on plugging away.

Lotteries and Windfalls

As with many people in the US a few weeks ago, we caught Lotto fever.  Over 1 billion is worth a flutter.  Overall, I am opposed to the lottery.  Originally in New York it was supposed to fund schools.  Really?  And look at the schools in Detroit.  But enough of that.

We bought a few dollars worth of tickets and began to speculate.  What would we do?  Husband announces that first thing we get the absolutely best doctor in the world for what we call MC (my condition).  Ok, you may say I am in denial but it works for me.  Everyone is different.  And after that we would buy a nice house.  We would pay off the one we currently live in.  I must paraphrase Hyacinth Bucket a.k.a Bouquet – the house that is now next to the used car lot with the massage parlor.  The parlor or message store as the police referred to it in a report I made after I had another flat in my driveway is temporarily gone.  Funny enough, as soon as we returned from police, the big sign in the front was gone.  Do I need to say more?

Then after a house for us, one for each of the boys and husband’s sister.  And then?  Well, lots to real charity.  In fact, the other night there was something on the news about local people being displaced and renovations  would have run a few million dollars.   Husband said, “We could have done that in a heartbeat if we had won.”  Well, we didn’t.

Recently, I have undergone significant financial reversals.  No, not the stock markets.  More along the line of no income.  It appears that hopefully after all the belt tightening, this is about to change.  As I anticipate this, another list to make.  Late last summer, a man who saw me commuting, pulled up his pants (nothing lewd here) and showed me a device on his leg.  He thought we had the same condition.  It’s a Walkaid and there’s also another product called Bioness.  They cost a few thousand.  We didn’t have any money when we spoke to the doctor about it and she said it might give me the same results as the Ampyra or it might be better.  It tops my new wish list.  I had to cut back on my traditional donations.  I was an officer at a bank years ago.  One of the first things I did when I received it was write checks to my favorite charities,  My co-worker thought I was odd but it used to give me a kick, almost as good as sex, more like a deep kiss.  Donations to AAUW’s Legal Advocacy fund and the County domestic violence unit.  My two favorites.

So what else have I been thinking about and missing?  Well, as I have said before clothing is my life.  Therefore, I shop.  I love the air in stores, the undercurrent, the lust.  It energizes me.  I remember being in Paris once hungry and tired but in track of a shop I had heard about.  I found it and revived like a flower in water.  Due to my own personal economic downturn I haven’t been able to do it for ages.  I am surprised.  This situation has made me less materialistic.  Clothes and cosmetics aren’t really part of this list. When I received word that things were going to be ok, I admit to flipping through a Smithsonian sales catalog and seeing some Christmas necklaces that would be wonderful for my elves next year.

So what else is on the list?  I want a car.  I wanted one for my milestone birthday.  And not just any car, a “luxury” car.  I am known for saying carwise I am OK with a box, wheels and a radio.  I certainly do not see a car as a reflection of who I am.  My ex-husband and my brother always derided me for that.  I wanna Buick, like the commercial.  It’s cute.  My brother-in-law who is amazing with dealers and dollars couldn’t make it work for me.  The car represents getting something for me and for once not settling.  That’s what it’s about.

This is what I have learned during this setback, downturn, whatever you want to call it.  I no longer want to settle. Not in terms of what I do for a living, not in terms of a car, not in terms of my health.  Oh, right after car on my list I have sliders for Zumba for my sneakers and a personal trainer.

It’s been a huge lesson and one way or another, in my mind, I have won my lottery.

August Warrior Check In

Life is still intense. I am thinking about the “default future”

How do I feel today –   Pretty crappy.  I was in a slightly manic phase the last few weeks.  I couldn’t do things fast enough.  I knew I had to crash and I have.  I put in a high stress over 50 hour workweek this week.  Bed late every night.  I made a presentation to our head on Friday.  Well, all I can say was it wasn’t negative.  It is hard to live with the continual uncertainty about the job.  There never seems to be enough time.  I am a Libra and feel seriously out of balance.  I need to clear the decks and can’t.  I have started a new venture except I haven’t.  I have the skills and the tools to rock it and little Miss Sabotage strikes again.   The MRI shows no change but I seem to be getting worse.  I  think  I am going to look into genome testing.

What did you do for yourself today?

I tried to sleep late.  I read the Sunday times,  yeah!  Straightened up a bit.  Sent in a job application,  sat outside in the gazebo. Did NOT go grocery shopping or any kind of shopping.

What did I eat today and how did it make me feel – Getting back to clean and it’s the right thing

Did I exercise? What did I do? How did it feel – No excuse not to go to the gym and I didn’t.  Miss Sabotage.  My fitbit has been wonky lately and I know that I had at least two days closer to 12,000 steps.  Ain’t drugs grand?  But zip didn’t record

For whom or what are you grateful? What matters most in life?   I am blessed with the most amazing friends, truly.  I have a husband who watches over me.  I continue to have possibilities.  And this year, beautiful flowers in the garden

Do I have a higher purpose or driving force in my life?   Make a mission statement –   Never give up?

How long have I been treated with conventional medicine Ampyra since April.  The Ampyra continues to work.  I am walking more with less fatigue.  Friday high stress day and took subway to Village during rush hour

The first time I had a symptom – June 2004 walking on the beach boardwalk.  Think it’s time to add last time -off balance, weak knees

What symptoms are most troublesome -still hung up on the ugly shoes!  And my hands seem to be weakening

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this. Still!  I let go of me and who I am and could be.  Same as last month

How is stress level? Skyrocketing with work issues

What can I do tomorrow to make it better than today?   Rest, take a step back.  Contemplate that default future and SMILE

Until next month.

Flip Flop Girl

Somehow I never posted this:  And it’s summer and no flipflops:

I love flip flops.  I always have.   When I was little, the other little girls wore them.  I wasn’t allowed except for the pool.  We called them zorries or thongs.  My mother called them slam patters.  My mother had very definite ideas about children and shoes.  In the spring I wore saddle oxfords, white.  They had to be polished every Sunday night with that horrid white polish.  As soon as I was old enough not to wear them.  They became fashionable.  It is one trend that will never work for me.  In the summer, something like the Greek fisherman’s shoes.  Buckles and perforations.  In the winter, suede ghillies that had to be brushed.  Not fun.

I got away from home and started wearing them in summer on the beach.  They were like 19 cents and unfashionable.  I had more than one pair.

I met a man who wore flip flops and loved the beach.  Well, I still have his flip flops.  I would get all colors and kinds.  I would wear them with everything.

I went to a party in a turquoise mini skirt at the start of fall with black patent flip flops with a fake diamond in the center.  Diamonds on the soles of her shoes.

Then I married someone who didn’t wear flip flops and things just spiraled downwards.  He didn’t like the beach because there was sand.  I felt like I couldn’t breathe.  I left and moved home to my parents.  By that time, my mother would wear them to water the lawn.  And I did have a few that I wore with censorious views.

I moved in with another man, older.  He knocked the joy right out of me.  I left.

I got an apartment and bought pink platform flipflops with pink flowers.  My best friend same over and said Thank God you are back.  “What do you mean?”  “You are wearing flip flops again”  From then on, it was flip flops in the summer, even at work.  And I work in a bank.  During the blackout of 2003, I walked out of New York City in a pair of black platform flip flops with glitter straps.

People bring them back for me from trips.  I have ones from the Far East and from Hawaii. I could go on and on.

And up until two summers ago, I was still wearing them at the bank – gold ones, silver ones and black patent. The gold ones are still under my desk.  At one time I had over 10 pairs of shoes under my desk.

I can’t wear them any more!  My feet no longer grip them.  This destroys me.  It’s my persona.  I miss me.  Instead I have been reduced to tie shoes – back to my childhood.  This is not right.  I mean really. No flip flops?  Also no beach, no walking.  This cannot continue.

So what do I do?  I’ll tell you, I haven’t thrown out a pair, even the pink platform ones.

With work this summer, maybe I can wear them again.

Let’s go to the Videotape!

I am on video all the time and have been for years.    I interviewed for the job I have now via video with London.  My group was based out of London and we met via video at least once a week.  I am/was photogenic.  We used to joke it was just like newscasters used to say in the old days as long as you were seated it didn’t matter what you had on from your waist down.  I learned I smile too much.  Technology has improved and become cheaper so I videoconference even more -US, Ireland, England.  Every other Friday from my home, I attend a videoconference with NJ, NY, London and Tralee.  I keep a Post It over the camera usually.  The lighting makes me look bad and I am very, very vain.  I do remove it for my manager so I can see her eyes and then she turns hers off.  At my desk, someone just complained they only see my  coffee cup.

For the last year I have been using video to record a presentation.  It allows me to add voice and I cut my seated self out.  I have learned from that, that my practice of combing my hair once a week does not work for me, my hair looks better for work “UP” and contact lenses let me look like me.

Well yesterday I had a shock.  I arranged a taping for a manager.  And even though I work in IT and am not technical, I am the one who understands how to set up the equipment.  Same thing at home. I am the one who can program the remote.  It was a big presentation so I started the recording and moved to back of room.  My first thought today when I retrieved the tape was my weight loss shows.  The tape starts with my back to the camera addressing people.  I normally disfavor pants at work.  I was brought up in a “ladies don’t wear trousers home”.  Think I saw my gran in pants once!  But I had a lovely new pantsuit. I am watching, thinking this works and then I moved to the back of the room.  I have never seen myself walk on film and with a cane to boot.  It was AWFUL.  I looked spastic and like Quasimodo.  And I was walking well for me yesterday. I did over 10,000 steps and made it back to the railroad in half an hour.  It was horrible.   I had no idea I looked like that!  I need to fix this.  I need to work harder.  Last summer I wasn’t using a cane at work.  Then I started using it in Penn at night more as a deterrent for people walking into me.  Now, I walk, no let’s be specific, spazz with it all day at work.  At home I lurch around grabbing walls and making my husband crazy.  Hand marks all over.  This has been so insidious.  I nearly wept when I saw the video but again, a home where you never, ever let people see you cry.

I need to start winning this fight,