Out of Work Summers – Beach and Bleach

I am writing this from my laptop in the backyard.  I am sitting in what we call our screen house so I am protected from the sun.  There is a delightful breeze.  I have been unemployed for 9 months; second longest period so far.

In periods past, I would be just returning from the beach.  Due to this condition that has been closed to me for now.  I can no longer tolerate the heat nor can I walk on the beach.  I used to find solace, peace and joy at the beach especially when I was out of work.

I started my unemployment  career in the garment district.  I went in and out.  Then I ended up at a major company and wa there for almost 9 years.  I loved what I did and was excellent at it.  The 90’s happened as did a merger.  I was treated in a textbook/case study manner.  I stopped getting invited to meetings.  My work was taken away from me.  I was let go with severance.  It was the end of May.  All my associates were let go after me.  I was grateful for this as it angered me and I would have been fired.  They let go a woman who had been there for almost 20 years.  She was paid less than what I used to expense for lunch and dinners weekly.  Ah, that expense account.  For nearly 10 more years, I didn’t make as much as my expense account.  I’d clear out my files and cry as I shredded the expense stubs that were larger than my current pay stubs.

When I lost that job (and I hate that term, I didn’t lose it, it was taken away from me) I was depleted.  I headed to the beach and spent so much time there my naturally dark hair bleached.  I also decided that I was going into business for myself.  I wanted a company that would never treat people like my low paid friend that way.  I have a great sense of what  is going to be popular fashion-wise and I had made connections literally all over the world.  I reached out to my network and received enormous support. What can I say? Great idea.  Wrong time.  Poor capitalization.  I showed merchandise to Brooks Brothers and was told it was too forward; try Paul Stuart. I had an existing relationship with Paul Stuart and was told it was too conservative; try Brooks Brothers.

I became seriously depressed and got married.  Bad, bad choice.  It was not convenient.  I made more money on unemployment than he did working.

I fought my way out and up and ended up part time at a financial services firm.  I was over a thousand hours and forced  to take nine weeks unpaid leave.  It was summer.  I hit the beach and the want ads.  Again, I bleached out.  I had an interview with a company that wanted someone who could do what had been done for my fashion employer.  Uh, that was me.  I came up with a portfolio of designs to show them, arguing the whole time with the late Joebe who wanted to impose his personal taste on the process.  I arrived at the interview deeply tanned from my beach time.  The interviewer took one look at me and said “Obviously, you are not seriously interested in working.”  He wouldn’t even look at the hours of work I had put in.

Fast forward, that  company made me permanent but I left after almost 7 years for the monolithic Bank. Finally, after 10 years was making a little bit more than those old expense account checks.   After 4 years, I was let go.  Back to the beach and back to bleaching out again.  And I married, again!  But this time I knew I would be working in the fall. It was a dream job at a major retailer making more than I had.  I also started moonlighting at the Bank.  What could go wrong?  Chapter 11 at the end of May.  For the 2nd time in two years, I was off for the summer.  Yup, beach and bleach.

Except for the first time at the end, I  was optimistic.  I had ideas and possibilities.

This time, I was let go in the fall after a total of 15 years.  I didn’t have the same hurt I had had with fashion.  My associations were different.  I was optimistic and calm.  I didn’t want to do my own business as I had done previously but actively look for work.

What’s different?  The Internet and my scads of experience.  Even if I was able, no beach and bleach for me.   I spend hours daily sometimes including the weekends looking for a job.  Today is one of the only days I am taking a “break” and writing.  What’s also different this time is that I am getting really good interviews.  What’s the problem?  Well, I am mature.  Experience costs money.  “We want you do but with someone out of college.”  Good luck to ya on that.  Didn’t you hear “You get what you pay for.”  And then, the elephant in the room.  My mobility.  There is nothing wrong with my brain.  I participate in research studies and I can remember the answers I missed the previous year!

It’s summer.  I HATE this condition.  It is taking so much away from me:  no beach and bleach, no walking, no gardening, no JOB!!  I need to channel that sense of optimism and possibility again.  I need to recharge without the beach.

 

Badlands

I have discovered Amazon Prime Music and I am in love and enthralled.  The music of my life at my fingertips, for free.  Well, for the annual membership which I use for tons of other things so this is just bonus.

I think I may be like many people in my age range.  I have albums of my music or as my little nieces say “What big CDs you have:.  I have downloaded some of it on my ipod.  But….  There are all those albums and memories.  I am in Amazon download frenzy.

This weekend  I found Badlands.  Serendipity.  I get through my life with music.  When I lose the music I know I am in bad shape.  After a long bad time years ago, I knew I was going to be alright when I heard Springsteen on the radio and felt joy again.

But Badlands is more .  Years ago I lost the job that I loved.  Why do we say lost?  I didn’t lose it, they let me go.  Eight and a half years of mostly love.  I believe the roots of my present condition hark back to that time.  I used to work insane hours happily.  I didn’t understand why people couldn’t wait till Friday or were upset at Mondays.  I travelled  all over the world for that company.  However, there was one trip.  I was really sick before I left.  I was going to spend two weeks in Japan and Taiwan and fly back to California to work a trade show.  Then I would stay a few days in Los Angeles with my boyfriend’s best friend.  Men who did that trip used to spend some days in Hawaii and their wives would fly out to meet them.  I was unmarried and wanted to go to the beach in Thailand (bucket list though the term wasn’t used then) .  Instead, I had to fly back to California to work.  One of the guys gave me advice on how to fly so sick.  “Blow Afrin constantly up your nose before landing.”  Well it worked.  I made it through landing.  Who knew half an hour later that the pain would be excruciating .  I was really sick.  I was the company’s “little girl”.  The men I had to meet for business were terrified that George (the president) would be furious if anything happened to me.  I was constantly plied with soup. I slurped my way through Japan and Taiwan.    There is a reason for everything .  I was in the same hotel in Tokyo as Mike Tyson.  His posse insisted that I “party with Mike.”  I couldn’t even croak.  Just nodded “no” numerous times and kept on going.  My brush with “destiny”. When stories came out about those girls later,  I totally believed.   I left Taiwan at 11 a.m. in the morning, landed in Los Angeles at 11 a.m. the same morning (international date line) and worked till 11 p.m. that night.  I was so sick I couldn’t think of staying in LA after the show.  Back in NY, I collapsed  in JC Penney’s.  I was diagnosed with pharyngitis.  I truly believe that disregard for my health is a source of my ultimate conditions.  And ironically enough on my return I found as scared as everyone was of telling George being furious if anything  happened to me they were also terrified of telling him that I was too sick to undertake that trip.  So, after all that dedication, passion and bad health, I was cut loose in the world.  I was gutted.  I lost my livelihood and most of my friends.  Well, I guess they weren’t my friends.  Actually,  I do still have some from those days and some have died.  In fact,  I had a card this week from one of them.  But with no money and no job ,  a disastrous marriage, I felt cut off from everyone including myself.  I would wake in the morning feeling as if there was a huge pillow in my face.  I left my then husband ( I love that phrase “my then husband”) and moved back with my parents.  They couldn’t acknowledge depression.  My mother was a pull yourself together type. She said to me at the time I had to learn how to do it myself because she wasn’t always going to be around to do so.

I was back in my childhood bedroom.  Me and my record player.  I started to play Darkness on the Edge of Town and Nebraska obsessively.  Badlands helped me through.  “Talk about a dream, try to make it real.  Spend your life waiting for a moment that just doesn’t come.    I believe  in the faith that can save me .  Raise me above these badlands. For the one who had the notion, notion deep inside, that it ain’t  no sin to be glad you are  alive. I’m gonna find one face that ain’t looking through me.  I want to spit in the face of these badlands.”  And that’s what I did.  I made it through the badlands.

 

And here I am again years later.  Another job “lost”.  Financially crunchy.  Up against those Badlands again.  It all came rushing back again.  This time I do not have my mother to put me back again.  I am starting to crash.  One thing I know I can’t and won’t go back to that freefall again.  Well, I still feel the joy of the music again.  And I still retain my resiliency.  Resiliency feels like a curse sometimes.  I used to tell my mother I felt like a Joe Palooka punching bag.  Every time you hit me I spring back.  My spring is getting kind of rusty.  This time there’s the extra wrinkles:  no parents, my condition, uh, actual wrinkles, a mortgage.  We wonder when I go for a job with my outfit coordinated cane/walking stick what the impact is on the hiring decision.  I had an interview where I had to get in and out of a van.  I would have and have had the same difficulties in the past with heels.  I am not the most graceful or coordinated person as numerous airport shuttle drivers can attest.

I see my resources dwindling as I hold onto faith.  And yeah, I’m blasting Badlands again

January 2016 Check In and Prior Year

Start of a New Year so it’s time to not only look back at the previous month but also state of being (so much more than health) for the last year.

How did I feel this past Year?

It was definitely a mixed year.  I had some highs and lows.  Getting the Ampyra and being able to walk more was great.  I also was able to get nice “things”.  It was an acknowledgement that I was good enough.  I made my milestone.  I spent it with one of my best friends.  I lost 20 pounds because I ate right, not diet.

I lost my job and that’s what I did, it’s lost. So, maybe that’s a low.  We’ll see

How did I feel this past Month?

It’s the holidays – a bit frazzled.  I am surprised despite being home I didn’t get a lot done for the holidays. It’s like losing in a way.  Overall, a bit calmer.  Still trying to sort out.

What did you do for yourself this year?

Well, I did more exercise and was more mindful of my health.  The biggest thing is that I stood up on the job issue and have not taken it lying down.  I also validated myself  by believing I was good enough.

What did you do for yourself this month?

Well, the Elves Workshop was a blast.  I have more fun than they do.    Spent time with the kids which was great.  Applied for jobs like crazy.  Still trying to reconnect with me.  Restarted my gratitude journal and my journal.  The gym.

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

The beginning of the year was better than the end.  I slowly drifted off plan.  It clearly reflects in my health.

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

Uh,  holidays?  Totally lost it.  Last year I didn’t touch the cookies.  This year I ate them all!  Still tried to mitigate when possible.

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

I am going to answer for both the month and the year.  I increased it this year.  Partly due to the Ampyra, and part due to what I wanted and needed.  After the job ended, I started the gym more.   However, it’s not like in times past.  I realize it’s because I can’t take classes so miss the social bits.

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

Again, I feel blessed, especially at this time of year.  I can still walk.  I have friends I love and who love me.  Life is still full of possibilities.  I still feel joy.  Friends, health and love are what matter.

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

Still working on that mission statement.  I am thinking about joy.  Someone commented recently that I have always been smiling since I was a child.  And she should know.  So sharing that joy.    And whilst I don’t want to be a poster child, I am partly out about the MS.  Okay, I still don’t accept it.  However, if coming out prevents people being treated the way I have been jobwise, then so be it.  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.  Waiting for coverage for the biotin

Symptoms – Well the stress hasn’t helped.  I am a bit weaker.  My balance is the pits.  My hands are going but I am fighting.

What symptoms are most troublesome  – Walking as always. A bit wobbly too.

Do I blame myself for things – Same as always. Of course! Yes, I am still blaming myself for not being aggressive against this. However, getting back to me, slowly, slowly but surely!

How is stress level?

Moderate.  There are days it peaks for sure.  When I take money out of savings to live and when I have to charge things.  But not commuting is so huge.  This still applies.  Feeling not working but am optimistic.  Stress is down a bit and manageable.

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

So aside from my Christmas pudding, a serious return to the right eating, sticking with the gym, gratitude and attitude.

Make 2016 count!

December Warrior Check In

Oh my.  I am not working a job and just realized I missed!  I am changing the questions from today to the previous month.  It’s more accurate

How did I feel this past Month?

Well still mixed.  I am still not working.  I have been getting much needed rest.  It is grand not to wake in the 4 a.m.  hour.  Having no money – not so good.   I don’t feel right about decimating my savings.  I worked so hard to put that money away.  I was finally at a point where I felt comfortable.  I know life isn’t about being material, truly but it was nice to go to dinner at a nice place and not stress, to get nice “stuff”.  I am trying hard not to be angry and resentful as that takes away from me and only lets them win.  I do believe that the evil you do comes back to you so I know the person behind what’s been happening will get it back in spades.  The way the world and life works I may not see it and that’s alright.  I do know that this time though I am not going quietly into the night.  I am going to fight it to the best of my abilities and limited finances.  So, in a certain way it is empowering.  I have reflected on what I have walked away from.  I have always been a great walker. Uh, slightly sarcastic.  Instead of dealing with anything, I just walked away, sometimes literally.

What did you do for yourself this month?

See above.  The rest and exercise have been great.  A lot of reflection.  I have started to write more and reconnect with people.  I am also evaluating how I have and am living my life.  On the fun side, getting ready for the holidays.  The Elves workshop is this Sunday which gives me enormous joy.

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

Trying to return to good eating slowly but surely.  It has to be the key.  What I have been thinking is that it really specific to each person within parameters.  So no gluten is a no brainer.  Eggs, not so sure.  Definitely non-processed.  Sugar is bad.  I don’t think it’s possible to cut it out completely but it can be taken way down.

Did I exercise?  What did I do?  How did it feel – I am going to the gym on a regular basis.  It’s showing in my waist but not so much my legs.  I am not walking enough now that I am not working.  This has been complicated by my fitness trackers not being accurate.  I understand for the holidays that situation is going to be fixed.  I am not getting the same addiction to exercise that I have had in the past.  It is partially due to the fact that I can’t do exercise classes.  I have been faithful with my Zumba but am beyond frustrated that I cannot do what I used to.  In my mind I feel the rhythm and I know how simple it is and my body won’t do it.

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

Blessed, especially at this time of year.  We had all the kids the night before Thanksgiving.  It fulfilled a dream I used to have.  I had a family around a table, laughing and talking and eating good food.  I feel grateful that despite not having a job, I have a home and we can eat.  Oh and yes, we somehow managed for now to have decent medical coverage so I can get the drugs I need to keep on walking

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

Alright, no mission statement yet.  I believe in principles and integrity.  Years ago a minister told me I had an enormous capacity for joy.   I haven’t lost it this go round yet.  It’s important to share joy.  I tell my little “elves” that every year.  So, I hope that is something I will leave behind. And I stand on principle, proud of that.  By fighting back, I am fighting for others too.  At Zumba, I have been told I am an inspiration.  I have never wanted seriously to be a poster child.  However, if I can show people I believe in my life maybe they can too.

Conventional medicine  Well, I received the Biotin but unfortunately it is too expensive for me to get without a job and is never covered by insurance

Symptoms – Walking deteriorating a bit I think but I see it directly relational to stress.  I am weaker.  I had problems with a 2.5 pound weight the other day.  I used to easily lift 45.  I have had a UTI which also has impacted me.

What symptoms are most troublesome  – Walking as always. A bit wobbly too.

Do I blame myself for things – Same as always. Of course! Yes, I am still blaming myself for not being aggressive against this. However, getting back to me, slowly, slowly but surely!

How is stress level?

Moderate.  There are days it peaks for sure.  When I take money out of savings to live and when I have to charge things.  But not commuting is so huge.

What can I do tomorrow to make it better than today?  Eat properly, exercise, have an attitude of gratitude, be productive and positive.

Wishing all joy and health in this season of light and darkness.  We shine light in the darkness and then it ebbs into renewal.  Don’t you think?

November Warrior Check In

How do I feel today

Mixed.  I have been getting good rest.  Down side – I am out of work.  So,  I am not getting paid and there is confrontation in my future.  I am angry which is something that doesn’t agree with me.  However, it is an improvement of the stress that I have been undergoing since August.  I just want definitive closure which I don’t see for the definitive future.  It’s Sunday and I read the Times again!  I am slowly, slowly decompressing and getting back to me.

What did you do for yourself today?

I did my stepper and tried to recalibrate my tracker.  I am reading.  I will probably cook something healthy.  I will play with my tea business.  I calculated everything I have earned for the year so I can sort out my health insurance.

What did I eat today and how did it make me feel – Still thinking about food and making good choices.  I did do chocolate but I am doing so much less of it.  I am looking forward to cooking something from Two Moms  in the raw.

Did I exercise?  What did I do?  How did it feel – Well,  I did the stepper and will do so again.  I have been to the gym twice this week.  Being out of work, I will start going practically everyday as I know from previous experience, it’s the only way I will stay sane and healthy.  It feels good.

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

Ah, I am blessed.  Someone I knew a long time ago said I was one of the few people at school that was authentic and cool and still am.  Kinda validates what I am about.  Grateful that I have the wherewith financial and emotional to weather this storm.

I have an opportunity to focus on getting healthy.

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

Driving force?  Well, I am standing on and committed to principle.  Hope it matters.

How long have I been treated with conventional medicine   I am going to start Biotin this week.Ampyra since April.  Baclufen.  I am seeing more and more about food.  I am thinking about mostly committing through the end of the year.  I should be at home and can couple it with exercise

The first time I had a symptom – June 2004 walking on the beach boardwalk.  This week I walked 11 blocks slowly during rush hour with a cane.  YeaH!

What symptoms are most troublesome  -still hung up on the ugly shoes!  And my hands seem to be weakening.  However, see stress rearing it’s ugly head.

Do I blame myself for things –  Of course! Yes, I am still blaming myself for not being aggressive against this. However, getting back to me, slowly, slowly but surely!

How is stress level?

Coming down a bit.  Last month, I was returning to uncertainty.  This month is uncertain in a different way.  I feel calmer all in all.  Not getting up around 4 a.m.  Is HUGE!

What can I do tomorrow to make it better than today?   Exercise, structure and move forward

Until next month.

Style and Grace and holding on to cry at home

I can’t tell you how many times I have said to myself hang on until you can get home and cry.  I was brought up not to cry in front of people, not my family particularly, but certainly the outside.  I have tried to live my life, especially when confronting obstacles and difficult situations, with style and grace.  It’s like a mantra for me.  Big girls don’t cry.  I have said “Style and Grace” every time I have been let go on a job.  I use it all the time, most recently in the situations I have been confronting on my job.  Okay lately,   I also take a bubble bath the night before potentially contentious meetings with Not Soap Radio – Bathing with Sharks.

I am getting tired of all of this.  I am hanging on.

So, I was not supposed to cry.  I didn’t receive my diploma on graduation day.  This was huge.  Additionally,  I never thought I would get married or have a wedding so this was going to be my day.  I was tapped on the shoulder and told I wasn’t graduating as we started the processional.  No one understood why I didn’t have my usual smile.  As we dispersed and I saw my parents, I started to cry.  My mother slapped me and covered my eyes with huge dark glasses.  I was out of work for ages and got a job.  I went in to have lunch with the owner.  He told me I didn’t have one; he had changed his mind.  Yes, here it comes another smack and dark glasses.  My husband was arrested and in jail right after my father died and I couldn’t get him out,  I sobbed on my sister-in-law till I wet her clothes.  Came home and started to sob.  My mother looked at me and said ” I thought I raised a grown up”.  And no, of course I didn’t cry when my parents died.  I gave both eulogies, no tears.  This comes at enormous cost. Yes,  I cry,  I gush rivers, just not publicly.  When I was diagnosed, no tears.  When the first physician’s assistant said “I think you have MS” I sobbed in the parking lot, not in front of her.  Maybe three times since 2008.

I am tired of holding on.

I had a meeting with the other ugly stepsister (work)  three weeks ago.  I thought I was being let go.  Stood outside and repeated Style and Grace, style and grace.  Summoned my grandmother’s spirit.  Walked into the room with my head held high and  SMILED.  Bathing with sharks.

So, this week:

I find out on my birthday that my health insurance company is closing.  Do you know how many years I had to wait to get covered for this drug?  It truly helps me walk longer and better.  If you saw me on the street you wouldn’t think so but it is better.  My new normal.  What happens with new insurance?  Scared.

Next,  I return to work and one of the ugly stepsisters wants a meeting with me to discuss what I do.  This is the woman that I reported to briefly.  I was like coyote ugly trying to chew my leg off when I was working with her.  So, once again we go through  “What do you do, how do you do it?” And  she is going to have someone who uses the word “wordsmith” to write something for me!  I can read the handwriting on the wall.

Husband has had a slip or several so I am back to being tense when I get home.  No real safe haven.

I had an appointment to discuss possible options yesterday.  Between the two meetings I literally couldn’t walk and was collapsing, bent over.

Today, I still felt still weak. Lots of training, walking, meetings.  Ran into guy who brought me back to this place. He’s been trying to save my job.  Calls me into a room so I thought I was finally getting the move and recognition.  NOT!!  My agent who handles my billing is going out of business.  No one else wants to take me on.  Essentially, this means I am out.  What do I do?  Go back to my desk and frigging smile!  Ok so I contact the trifecta- my doctor, lawyer, accountant.  In addition to my smile, I am known as a survivor.  Keep on murmuring style and grace.  My body is channeling all the stress and I lurch to the train.  They change the track and the escalator and elevator are broken.  Nearly fell going upstairs.  I do make it to the car.  My whole plan this afternoon was to get home like a pigeon and cry.  I started to cry close to home on the phone with my husband.  His response?  “Don’t be such a girl”.

No tears but my stress pattern is reverting to two I had years ago.  I used to have pre-fainting – pre hyposyncopia (sp).  I turn grey and my eyeballs roll  up in my head but I don’t faint.  Later years, I got palpitations.  Tonight both.  I know it’s holding the anger and the tears.  Now with this condition it goes through my body.

And tomorrow – style and grace.

October Warrior Check In

How do I feel today  -Better than I have in awhile.  I am going back to work tomorrow after a week off and I am dreading it for numerous reasons.  However, it appears the hurricane has passed us by, the sun is shining and I am focusing on the positive.  I have so much to be grateful for. I also feel that I am back on track.

What did you do for yourself today?

I read the Sunday Times, most of it, on Sunday!  I cooked something healthy and good.  I was indulgent and bought nail polish

What did I eat today and how did it make me feel – Eating right except for dinner tonight – will have small steak.  On holiday I did OK and tried to be in balance

Did I exercise?  What did I do?  How did it feel – Ah, every month there is a weak spot, still trying to calibrate Jawbone but I definitely have not walked nearly enough in the last week.  I feel weak but determined.

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

Friends and family.  Last night the boys and their girlfriends joined the nieces and I at a mystery dinner at the church.  The table read Reserved – “X – Family of 8″  It made me feel warm.  The fiancee declared in 10 months, I will really be a part of this family.  I was given beautiful presents for my birthday and a beautiful card.  I spent 4 days with one of my best friends on vacation last week.  It was restorative. I had all kinds of birthday wishes from near and far.  And as someone once said ” You know Santa and the Easter Bunny?!!!”  What more could I or should I want out of life.

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

Ok, still a problem. Still believe deeply in joy.  In the last few weeks due to the situation at work where  I am no longer being allowed my medical accommodation,  I am planning legal action.  I have been told this will benefit other people.  So, there you go.

How long have I been treated with conventional medicine Ampyra since April.  On my birthday, I read in the Times that my medical insurance company is closing so we are scared that I will lose this drug.

The first time I had a symptom – June 2004 walking on the beach boardwalk.  Lately,  I have been using the cane which I am going to rename a stick more and more each week.

What symptoms are most troublesome  -still hung up on the ugly shoes!  And my hands seem to be weakening.  Same as last month.  Getting a little wobbly.

Do I blame myself for things –  Of course!Yes, I am still blaming myself for not being aggressive against this. However, getting back to me, slowly, slowly but surely!

How is stress level? Middling, as I have not been at the office Sept 23 but have to go back tomorrow and face the music.  I know I will survicw

What can I do tomorrow to make it better than today?   Continue to take positive steps in eating, exercise and most importantly the pursuit of balance.

Until next month.

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.