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.

Zombies, Dreams and Other Bumps in the Road

Disclaimer:  Life isn’t always about the disease or the condition.  When this journey started, I said I would not be confined or defined.  Well,  I started to let that happen.  I am fighting my way out of it.  I really dislike fighting.  I don’t like conflict.

Fact about me:  I am an avid, voracious and catholic reader.  However,  I don’t really do the supernatural or horror. Mysteries?  Yes.  Literature – smiles.

Disclosure:  My area of concentration at college was the synchretization of African religious beliefs in the colonial world.  I know, I know what was I thinking.  It is seriously interesting to me .  And that means I studied obeah, santeria, macumba, voudon.  But so not into zombies and if you really look at voodoo that’s not what it’s really about.

About conflict:  Work has been in turmoil for awhile.   I discovered earlier this year that my group head does not believe I am qualified to be a trainer!  It’s my job and I have been doing it with this organization for 15 years   11 years ago this month the training department in North America was disbanded as it was considered an expense not an investment and I was let go.  I was hired as a corporate training manager for a major US retail chain.  6 months later, I was asked back to finish some work.  So I did both jobs.  When the retailer went into bankruptcy, they were thrilled and I started working more hours, lots and lots.  Even now I average over 40 (billable) hours a week, have trained literally hundreds of people and created numerous successful programs.  So d’uh?  When I came back simplistically because of the expense thing they couldn’t call me training.  There are also corporate cultural and political issues so I do not identify there as a trainer because I seriously love what I do and yes, it pays well.  Also,  I work in I.T.  And am not technical.  I am the translator.  For those of you of a certain age,  I am the Mikey likes it of the department – if I understand and can do it, anyone can!  She says I told her I wasn’t a trainer.  Uh,  I made a  comment on 2nd day she was here!  In fact, one year they called me BUST – business user services/ testing!  My immediate manager and my former manager are moving to the other side of the business.  I was told that they didn’t know who my supervisor was going to be or where I would be located.  Unsettling.  And you know stress goes right to my legs and it’s not good.

Ok stage has been set.

Sunday night I dreamt that this woman (group head)  was a zombie!  She was on the ground disabled.  I was there and someone had given me a HUGE cartoon-like Chinese cleaver.  In my real life I have problems literally killing flies.  So,  I am holding this cleaver and there are people standing around me telling me I need to cut her head off.  It’s easy, the cleaver is big enough, it will be a clean cut.  I hesitate but they tell me I need to and can.  I visualize a dressed chicken. At the last minute  I smash her face.  There’s blood all over her face, rivers of it.  Then she starts to get up and I wake up screaming.

In the real world, I don’t talk to her or interact with her.  And I don’t do blood.

Cut to next day,  I go in and get a note from my former manager, there is a training job open.  Oh, I am not an employee. I am freaking and bouncing off the walls.  Tell husband to be ready and get me.  I literally stumble in.

For now, all is good.  It may even work out.  And I am walking really well.  I have had some great meetings and interactions.  It will be alright.  I am beginning to feel like me, the old confident, creative me!

But what did that dream mean?  Why did I have it then?

Another Blow

I have had a relatively crappy week.  I didn’t get the job.  That’s alright.  I know things happen for a reason.  I have not gotten many jobs over the years that I wanted and was qualified for and it’s all worked out.  There was one in California where they wanted someone who understood multiculturism.  I am multi- cultural.  The owner’s wife died 4 weeks later and the business closed.  Same with a handbag manufacturer – son died within the year, business closed.  JC Penney moved to Texas.  Two of my most sobering ones, early on I didn’t get a job at Cantor Fitzgerald and in 2000 I didn’t get another job at the WTC.  Recruiters called me for months with that perfect opportunity.  I always get to work early. I would not have made it.  So, I do know.  This job though represented a chance to have a different kind of life.  No  more 4:15 a.m. out the door before 5:30 a.m. Dental insurance!  I have just found out I need several thousand dollars worth of dental work.   A whole change in lifestyle.  I could taste it. Plus,  lately I haven’t been treated well on the job.  Who hasn’t had resignation fantasies?  I wanted my company to regret losing me and understand the full scope of what I do.

On the up side, I feel empowered to keep on looking.  I now have a clearer idea of what I want and need.

Fridays I work from home because of my condition.  Every other Friday I attend a team meeting.  I am not really part of the team but the org chart put me there.  It’s a team of developers.  I work in IT but am not technical.  I bill by the hour so on Fridays, it’s easy money for half an hour to an hour.  Most of the time I do not understand what they are saying.  It’s a foreign language and I have a facility for languages.  What is kinda cool is the team is in NY, NJ, London and Ireland.  I video/conference in from LI and one of the team comes in through PA.  Oh yes. I view the video but block them viewing me most of the time.  When I am in the office,  I tend to turn it off too.  One manager recently asked me, “How come I always see your coffee mug but not you?”  I digress.  This team is primarily male.  There is 1 woman sometimes in NY.  She’s a recent add on.  There are one or two in Ireland.  Think of this as the sniggering little boys club.  They are always talking behind people’s backs and saying snide things.  I get a notice Friday morning  that the meeting has been pushed back 15 minutes.  I enter a minute early and it is very much in progress.  Oh,  you joined.  We made an announcement,  R (my manager and for years my champion, but not lately) is going over to the other side of the business.  We don’t know who you will be reporting to.  The developers will be moving to another building but we don’t think you will be going with them”. I feel like all the wind has been knocked out of me.   I have worked with this woman for 15 years!  She could have told me herself but that would have been human!  I have a friend there who always says “Ah you work with the F’ing computer people”.  I have recently been told not only by this manager but by my other former manager that the head of the department has badmouthed me and doesn’t understand why she should be paying me.   My feeling is that I am about to be let go.  My agent says my contract is meaningless.  They have broken them before with him.  I do reach out to her in the afternoon and she tells me no decision has been made about where I am going; she is open to suggestions.    She has wanted to put me in HR for almost a year.  I have bad, bad history with HR.  They have made changes but for those of you who know me…. I work in organized chaos.  The new HR is OCD, seriously.  And although I have worked corporately forever, they are much too corporate and clique-y for me.

I need to keep my stress levels down.  Stress goes directly into my legs.  This is not helping.  I had started yoga every night but am not sure how much it will help.  Of course, I am going to fight but fighting takes enormous energy.  Yes, of course I have a case.  I have been a consultant there for 11 years after they eliminated my job of 4 years and brought me back to do the same thing without benefits!  I am a woman, over 40, interracial and disabled.  I just want to continue to do what I do.  I enjoy it most of the time. Yes,   I do want to make changes.  I have always had a deep faith in the Universe so I have to look at this in the light that the Universe is reaching out to me.

I am medicating, by that I mean I went out and bought a seriously pretty dress and will pretend that I am not wearing ugly shoes.  I have chocolate, bubble bath and novels.   My husband is prepping the grounds and we have been to three nurseries and bought tons of flowers.  It will be soothing.

I know it’s life but I am so tired of struggling and fighting.