My Birthday

Well,  I hit my milestone today.   I have been so wrapped up in this for the past year.  Finally, this week I decided it wasn’t all of that.

So,  I took time off from work and drove up to Finger Lakes to spend some time with one of my besties and husband.  Sunday night we sat outside on the deck and watched the blood moon.  A magical beginning.

Today we drove and saw art and did a little shopping.  And then great wine with friend.

I feel so blessed.  I may have problems walking but I am surrounded by love and new possibilities.  Both my stepsons and their girlfriends called me.  I had best wishes on Facebook.  Messages from friends when I woke.  Awesome card from husband.

I have hope despite all.

Age is a number and a troubling number at that.  I have never done well with numbers.  Can’t say I am looking forward but not looking back either.

I will make this last part of my life count!

I am so blessed

September Warrior Check In

I recently took one of those Facebook  quizzes and both my first and middle names mean warrior princess

How do I feel today  –   Mixed.  Recently, there has been a reorganization at work and my medical excuse is not being honored.  So, on the positive side  I slept till nearly 7 a.m. this morning.  And I am not allowed to work from home at all.  Upside, I am getting back in touch with me and what makes me tick and joyous.  Other side:  I am limited.  I am planning a tea with friends next weekend and am dependent on my husband to get things.  I have a wonderful tea set.  It’s upstairs boxed because he doesn’t like it.  It’s too far in the eaves for me to pull it out so I won’t be able to use it.  This frustrates and hurts me.  He is angry and moody today which also brings me down.  I realize this must be hard for him but it is harder for me.  I fell yesterday morning and that is upsetting him.  I am working on something, late as usual, that is pictures of both of us.  I was short some of me as a child and went upstairs to get a few.  It hurts.  I have no children.  My brother and I are estranged.  These photos mean nothing to anyone but me.

What did you do for yourself today?

Well,  I am taking stepson to lunch.  I am going back upstairs to straighten up.  I am planning my tea.  Maybe, just maybe I’ll get to read

What did I eat today and how did it make me feel – I have been moving more and more to eating in a way that will help me.

Did I exercise?  What did I do?  How did it feel – Replaced Fitbit with Jawbone and trying to calibrate it.  Gym is a possibility.  I am looking for a new job so want to be/appear stronger.

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

I have been thinking a lot this month about the stepkids.  I am so blessed.  And I get along with their girlfriends/fiancee.  I asked fiancee to lunch and she thought I was mad at her but accepted anyway.  How cool is that?  It was to give her something for her wedding day.  After a certain point I never thought I would have children in my life.  I guess I do. It’s hard for me to believe they care for me. It’s a great gift.  And one of the reasons I have them is because of my friends.  I have friends who are amazing lifelines to me.  When I first became involved with the boys they were my guiding lights.  I am blessed!

Do I have a higher purpose or driving force in my life?   Make a mission statement –   I still have problems with this one.   I had a minister who once said I had a great capacity for joy.  Let’s go with that one for now.  I do an elves workshop for nieces every year and I tell them it’s about spreading joy.

How long have I been treated with conventional medicine Ampyra since April.  The Ampyra continues to work.

I met a man with a walkaid device and that looks appealing

The first time I had a symptom – June 2004 walking on the beach boardwalk.  Fell twice at home recently but it’s due to stress.

What symptoms are most troublesome  -still hung up on the ugly shoes!  And my hands seem to be weakening.  Same as last month.  Being dependent or limited is driving me wid.

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.  This month thinking about the self sabotage

How is stress level? Very bad.  Work is worse and it’s having a financial impact.  Like Scarlett O’Hara, I’ll think about that tomorrow.

What can I do tomorrow to make it better than today?   Continue to get back in touch with me and what gives me joy.  Organize the clutter

Until next month.

When It Rains….

I am having problems at work.  Change in the organization and I am no longer allowed to work at home, even with the doctor’s note.  I am getting it sorted but in the meantime it’s having a significant financial, mental and physical impact. I have a letter from my doctor saying I should not be in the office when is 85 or more.  Me, I thought 90.  The problem is I commute and am in the subways.  The first time must have been 6 years ago or so and I arrived home with 102.5 fever.  I was in Times Square and all of a sudden could barely walk.  Doctor didn’t know what came first.  Until  I get sorted out, I am continuing to go in.  I see where this is going – oh she can’t be here and she can’t do the work.  So I struggle and husband comes in and helps me home.  It is expensive.

Wednesday, when I left they were announcing delays and signal problems.  Normally,  I would have turned around and gone home and worked.  Wednesday would have been perfect as I had training scheduled with Ireland and they had wanted it early but in the office my best offer is 730 a.m.  The ride which is usually under an hour was almost two and a half.  I can’t sit or stand for long times.  Then just as we started to move,  I heard for real for the first time “Is there a doctor, medical personnel or law enforcement on the train.  If so, please come to car number in the front of the train.”  Now,  I get out in NYC, people are late plus it’s peak so a pushy, fast mob.  Exactly why I travel alternate hours.  I miss my pill which helps me walk.  No water and it can’t be broken apart.  Get on the bus and they announce a detour as the street is closed.  I can’t make this stuff up!

My husband can’t come in and help me because the trains aren’t working,  I have to leave early to avoid any mess.  I do make it through the stations in the high heat.  I arrive at Penn, with  4 minutes to spare for a train to where I need to go.  I have to tell you I love travelling with the construction workers.  They pick me up when I fall and super polite. I had to walk downstairs – numerous offers of help and no one pushed me on the train.  I get a seat!  Settle in like a bird in a nest.  Announcement:  We are experiencing equipment problems.  Really!  Luckily, it sorted out.  I was so grateful.

Cut to this morning – I have on a white toile dress.  Get my coffee, granola with milk, walk into my office/den and left toe goes.  Everything flies all over the place.  Upside nothing broke – not my body, not the cup, not the bowl.  And miraculously, not a drop on the white dress.  I know I fell due to the stress!

But I am now off for a few days!

Evaluating, Instincts and Perspective

It’s been a hard few months for me.  Particularly, the last few weeks.  I very rarely admit it but I have a streak of a workaholic in me.  Years ago, one of my friends told me I was the same as her except I did the extra work at home in the bathtub and in my bunny slippers.  My assistant used to go “Grrr, I see you wrote this in the bath again.”  That situation ended badly.  I was in that job for nearly 9 years.  I increased their business.  I literally made myself physically ill and as I have mentioned the roots of my present condition lie there.  I went to Asia on business when I could barely talk or breathe.  Forget experiencing Asian cuisine in Asia; every place I went they poured soup and tea down my throat.  Here’s what I did:  I left Taiwan at 11 o’clock in the morning, landed in LA 11 a.m. the same morning and worked till 11 p.m.  The men always stopped in Hawaii with their wives.  I  flew home to NY and collapsed in JC Penney.  Several years later I was let go from that company.  It was awful.  I had invested too much of myself.  I was left without myself.  I was severely depressed.  I got married.  Yes, I know.  And that made everything so much worse.  I was unemployed or under employed for 10 years and then I got this job.  Financially, I was back.  The first four years as an employee were great.  I left it at the office.  I worked late once or twice.  There was a downsizing and I was let go.  I said “Thank you.  Summer on the beach with shells in my hair.”  My condition manifested itself for the first time that summer and we put it down to stress and lack of activity.  Working, I walked miles a day, literally.

Cut to the present:  My life has been out of control and out of balance.  I went back as a part time consultant.  It was never really part time.  I joke the reason I was approved for my mortgage working part time was a major project went live the month they looked at my financials and I was doing over 40 hours a week.  Well, once I went back full time I started at around 37.5 a week.  I told my manager when I started back that  I knew hw he was and it would be more.  He swore to me I could be out the door by 4:30.  Well, that lasted a few weeks when I was told they needed more time.  Our agreement was that I could do it at home.  For years, I have done nights and weekends. 2007 – 2008 averaging 50 hours a week.  Note the word average.  Once this condition began to impact me I worked more and more from the house.   I work in an IT department so it’s relatively technologically advanced.  I laugh as every other Friday from home I am in a meeting with New York, New Jersey, London and Ireland.  This year even though I worked from the house I have been averaging closer to 45 hours a week with a lot of weeks 50 – 60.  Yes,   I do bill by the hour.

Recently, the two people I have always worked with except for a hellish 6 months were reorganized out of my area.  First hint – no one knew what to do with me and I heard unofficially I was going back to Hell.

In the interim, the group head starting signing my time sheets August 1.  I worked 48 hours one week to deliver a major project.  She said it was over time.  I said you owe me a lot of money then.  Upshot, not allowed to do more than 40.  Okay, I can live with that.

I work remotely on Friday and have done so for a few years or very, very short Fridays in the office.  It  is too dangerous for me to commute with the weekenders and I do have fatigue.  I have a doctor’s note.  I usually work longer on a Friday as I don’t have to commute.  The doctor wrote me a letter not to work when it’s 85.  This hurts as remember, summer on the beach with shells in my hair.  She apparently is not honoring this.  This means unless  I come in and jeopardize myself I lose a week’s pay a month.

A friend texts me Thursday night that the company has posted a job opening for Learning and Development.  I look it has been written to exclude me – must be able to sit or stand for long periods.

So, I  find myself in the same position I was over 20 years ago.  I did it again.  I put my heart and soul into this.  I cared. I did their work at the expense of my life.  They would call it scope creep at my job.   I can’t believe I bought into it.

I used to work in the garment industry and was laid off all the time.  I just had a sixth sense as to when it was going to happen plus someone would tip me off, too.  The only time that didn’t happen was when I was let go from my short interim position while I was doing little part time for the bank.  For the last three years,  I haven’t been feeling right there.  I have very positive moments and very positive reviews.  However,  this morning I said to myself “Face the facts.  You are going and sooner rather than later.”  I already had started taking things home.  However, when my credentials/capabilities were questioned. I brought in framed copies of my certificates.

I find myself feeling sad, nervous and betrayed.  I have to hold onto the belief that someone will hire me on suitable terms even though I am technically old, limp and use a cane.

I am resilient.  I always try and see the upside.  So being home for four days has been a blessing.  I am getting to catch up on my life.  I spoke to three friends on the phone yesterday, a luxury.  One was one of my exes (yes me and the eternal exes) and he had been with me for part of the first time.

I am approaching a milestone and am frighteningly aware of my mortality.  But this is an opportunity for new horizons and new possibilities as I approach this.

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.

Teeth and Age

I read a long time ago that if you dreamt of losing your teeth, you were dreaming about age.  In a non-coincidence just before my 30th birthday I dreamt all my teeth fell out.  Now I am older and definitely have teeth issues.  In fact, I believe teeth are at the root (Ha, not ha) of my present predicament.  The hole in my mouth.  Recently, the bridge and crown covering that rogue tooth was removed.  The remainder has to go but I have been trying to hold off as I have an important meeting with the head of my company July 31.  I need to be able to talk and look healthy.   And yes,  my health is important but if I have no job or a miserable one, my health will also be impacted negatively.

Today, I took our 12 year old niece to a bracelet making class for her birthday.  Just the two of us at an adult class.  She told me how she feared 13.  It’s the end of childhood and she will be a teenager.  A child after my own heart as she has 11 months to go.  Today is also the day of my high school picnic. SUSAN GRADEvery year on this weekend in July, my high school which closed in the 80’s has an all class picnic.  I grew up in Levittown and as I explained to my niece not only were there people in your class but whole families you grew up with.  I literally was in the same class with one boy from second grade through my first year of college  I went two years and then stopped.Susan and Jerry Dumas July 2012  I find I revert to high school and try to disappear. I was quiet and odd.  Now I am louder and odd.  I explained to my niece when I was at school being smart was not looked up to.   I also hate looking the way I do.  The first year I went without the brace.  The second year I had to.  Now, I have to use a cane.  I can’t STAND the OMG what happened to you!!! And the pity.  Don’t tell me it’s in my mind either.  Because of mobility, it’s hard for me to get up and move around.  The first year we went my husband was anxious as he thought he wouldn’t know anyone.  He is younger than me and grew up several towns over.  You can tell where this is going.  He recognized more people than I did.  Recognize is relative.  We are older and balder and broader and greyer. Me,  I am the gimpiest next to the guy that my husband knew who lost his leg in a motorcycle accident. So,  when I think I see someone I recognize I can’t walk quickly enough to talk to them.  And here’s another reason I don’t go anymore, every year after the picnic someone dies!  First year someone got run over by a cab, 2nd year a guy who grew up behind me was hit by a garbage truck, last year someone from my class was killed by a wrong way driver.  Why tempt fate?

So jewelry with niece, leather wrap bracelet, nicer than hippie ones, safer than picnic.  However, all the nostalgia and seeing things again through 12 year old eyes.  We leave the class and part of the rogue tooth crumbles and comes out.  Irony and age.  Now I have another hole in my mouth, more poison loose in my body.  A stunning reminder of aging on a reunion day.

Another Doctor’s Visit and MC

Well, I went back to the doctor for a check up after Ampyra.  I wore a dress as I had had an important meeting at work.  So peach sheath with eyelet lace top, white shawl, pearls, the spectral leg and palomino tie shoes.  She told me how good I looked and loved the shoes.  I don’t mind them.  She also assured me that I looked fine.  I hate feeling odd and spastic. In fact, she said I looked great.

My walking is improved.  We knew that already.  She was really happy. I have had no adverse reaction to the drug.  I just read someone else’s blog about drug costs.  I was originally not covered for Ampyra and my insurance blithely told me $1300 – $1500 a month.  I had to go on Affordable care.  I am covered!  But here is what’s odd.  I make more money than I ever have but drug company now is subsidizing!

Now, I have insurance so we can discuss Copaxone.  She told me which I  knew it would be off label, shots ( I don’t do needles) and it’s only been shown to be effective  in men.  Our decision?  No.

Next we discussed my scans.  Again, due to Affordable care I can afford them.  I was dreading this as my hands are going.  Right now I am not typing this at my regular, typical speed.  Forget my already bad handwriting.  There are times I can’t use my fork properly.  This annoys me as growing up I was told “don’t shovel”.  My husband has to put up my hair. And my left foot feels like a club.  The MRI says NOTHING has changed.  Now this makes no sense.  I used to walk into that office with heels.  I didn’t wear spectral leg all the time nor a cane!

Our feeling is that’s why we call it MC for my condition.  We don’t think it’s the other.  I believe this first ran amok in my system when I had no job or dental insurance and a hole in my mouth and subsequent infection.  I eventually had work done.  And recently, the bridge ( same tooth) was really loose.  I was bleeding through my teeth there.  I had a cavity filled.  The dentist was going to remove the bridge and remains of the tooth.  His words  when he went in, “It’s very mushy”  Lots and lots of decay which means poison in my body!  I have to go to the oral surgeon for this and my wisdom tooth removal.  I am supposed to do it at the same time.  More drugs in my future.  I have a meeting with the head of my company July 31 and don’t want to take chances so will schedule right after.  We think this will help me improve.  I am also going to be more aggressive in eating clean foods and the exercise.     Improvement will and can happen.

July Warrior Check In

Back for July and late again.  Life has been a little intense lately.

How do I feel today –   Better than I have for the past few days, see previous blog.  I know I will never go back to the way we used to live.  Today is a holiday and the weather is uneven.  This works out as my plan for this weekend is/was to paint the office and catch up on my life.  I blog sometimes on another site and haven’t done so for ages. I am starting a new business and need to get cracking.  I really need to clear the decks.  It was great not getting up early today and not going anywhere.

What did you do for yourself today?     I slept, I am cooking, blogging and cleaning.  It feels peaceful.  I like spending time in my head.  I think I will read trashy novels.

What did I eat today and how did it make me feel – Still cheating with the good stuff.

Did I exercise? What did I do? How did it feel – Thinking about getting on the Wii and playing games, particularly balance ones.

For whom or what are you grateful? What matters most in life?   Grateful for friends. Grateful husband is back on track. Grateful that I can afford to take the time off and for the little things in life that are huge.

Do I have a higher purpose or driving force in my life?   Make a mission statement –   sounds too affected for me.  Working on the Mission statement, something along the lines of do no evil and never ever give up

How long have I been treated with conventional medicine Ampyra since April. I have walked more than I have in years.  The Ampyra continues to work.  I am walking more with less fatigue.  I even handled Grand Central and Penn pre-holiday!

The first time I had a symptom – June 2004 walking on the beach boardwalk.  Think it’s time to add last time -uh this week cramping and off balance

What symptoms are most troublesome – wearing ugly shoes and not being able to really walk.  Problem with the new spectral leg is my foot is too weak to get into the shoe

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.

How is stress level? Stress is still there but I have taken time off and am trying to keep things in perspective

What can I do tomorrow to make it better than today?   Go to the gym!  Continue to do what makes me happy on my day off.

Until next month.

Here We Go Again or Not

Well, tonight we were supposed to be taking the youngest and his fiancee out to dinner to celebrate their engagement.  We couldn’t go to the engagement party as it was at his ex’s and I believe I wasn’t invited.  He is not allowed to drive and the kids said they could get him a ride.  I was really looking forward to celebrating this moment in family life.  I was reflecting while I was at work how lucky I was.  I never had children of my own and I have come to love his two and believe they love me.  I never thought I would have a moment like this.  We had made reservations at a very nice restaurant.  I wore my new Calvin Klein outfit – beige and white sheath with gold accents and a subtle gold shimmer shrug.  Ok, I had on the ugly shoes.  But  I did feel nice.  My manager told me she loved the dress and I looked thin in it.  Ironically, I am down to the same weight I was when my father died and he went to jail 12 years ago.  Funny what time does to bodies.  Then, everyone was worried about how thin and drawn I looked.  He used to worry when I visited him in jail that I looked like a junkie because I was drawn.  12 years forward and I have middle age splodge at the same weight.

I have been thinking he was off again for a few weeks.  Not in a big way but just enough.  He sounded wrong this afternoon on the phone and I didn’t want to believe that he would do something on such an important night.  Swore when I got in that all was OK.   I was going along with it until I asked him for change for the restaurant tip. I had given him a twenty last Friday for a hair cut he didn’t get, plus he had some more cash in case he needed to come pick me up at work.  Tonight he had $11 dollars.  I texted son and fiancee that dinner was cancelled, cancelled the restaurant too.  In the old days, I would have gone along with it.  I texted his sister and asked for help.  Specifically I told her he had been drinking again; I believe probation will come either tonight or tomorrow and he will breath positive.  He is not allowed to drink on probation and I have an order of protection that he can’t drink when he’s with me.  Almost three years ago we had a stay away order which I didn’t want.  If he violates, that goes back into effect.  I didn’t want it then and I don’t want it now.  I am NOT a victim.  As usual, sis has not come through.  When this stuff happens, he’s not her family, he’s mine.

I have learned that it’s useless to talk to him when he’s like this but this time I have taped some of it.  I missed the truly nasty bits.  He is saying he doesn’t care and when he is straight he says that is the problem, he doesn’t care when he drinks.  He has come so far to have this slip up.  We have been having fun and doing things together.

I am in much worse condition now than when this whole mess started.  He literally helps me out of the bath at night.  He ties my shoes for me.  He helps me come home from work when it’s late or hot or I am too fatigued.  We have been making a beautiful garden.  This week he had to put my hair up for me because I was too weak.  He liked my Paint Night painting.  We laughed I am better than a first grader in art but not a fifth grader.paint night June 2015

I can’t and won’t go back to the way we used to live.  I literally had to take my pocketbook into the bathroom with me if I got up in the middle of the night.

I have taken the weekend, Friday and Monday off.  This costs me as I am a consultant and don’t get paid.  We were going to redo my home office and had bought the paint.  We bought a new TV that could be used in here too.  Obviously, it’s not going to happen.

And I am devastated and heartbroken.  Not eating, so will go below my “junkie” weight.  Last time he was arrested, I lost 6 pounds in two days.  Guess I’ll do what I usually do to medicate myself – read novels, write and make things but no bubble baths.  I hate being resilient but guess it’s what saves me all the time.

The Kindness of Strangers and Providence

Continuing on my “winning” streak.  Monday morning.  The bus is late and doesn’t pull up to the curb.  I have enormous difficulties climbing on.  The good news is that since it was Monday, I could get on.  I made great time.  I was even able to cross Park Avenue in one go without help.  I haven’t been able to do this in months by myself.  There is a security guard in the building who sees me in the morning on his way into work and helps me cross and get in building.  He always tells me he has my back.  And there’s another guard at MetLife that watches out for me and helped me when it had rained and the floor was like icy glass.  I am so excited crossing that I don’t notice the sidewalk is closed.  I have to pick my way to the building entrance in the street.  There is no cut out and after the bus, I can’t manage the curb.  I ask for help and a young guy ear buds and all lifts me up, then asks if I need help with the building stairs.  People always say New Yorkers are rude but I have never found them so.  Perhaps fast and rushed but always helpful.  And that was even when I was well!

I walked well in the .  My left knee started to twinge as I left the office.  My right leg is the problem.  Breezed through Grand Central,  Times Square,  a little buckling.  Penn, just a little.  I always go down to the platform even when they say not to.  Yesterday, something stopped me. My left knee starts to buckle as I am standing there.  It’s odd.  Track change!  People held the elevator for me and I got on the train.  I sit in a car that is way off where I normally get off.  So, I walk to my stairs.  Not bad.  Top of the bannister is gone.  I need this.  However,  I manage to grab on.  I go down stairs one by one sideways.  I see a group of kids at the foot of stairs, look like clean cut teens. Maybe Eagle Scouts?  Crap!  After all this and knee is twinging like mad, I am going to have to say I don’t want to buy candy, chances, donate, whatever.  I go down two long flights of concrete stairs every night.  I do not want to deal.  I get to the second flight and I am beginning to count and I have to go to the bathroom sooo badly.  I get three or four stairs from the bottom and my left knee collapsed meaning I collapse.  Hanging onto bannister with both hands and can I tell you I have on a beautiful cream lace sheath?  Aside from injury, I don’t want this dress ruined.  Teen boys rush up, catch me, straighten me out and help me down stairs.  Nope, not scouts.  Missionaries!  Yup, even offered me water.  That’s what they are doing, offering cold water.  They “saved” me.  And they were there again tonight!  Kindness is all over the place.