mind body connection

Another Blow

Posted on by tresswann

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.

May Warrior Check In

Posted on by tresswann

Back for MAY :

How do I feel today – Nice day.  Attended a tea.  I actually did a table.  I was all tizzed about it but think it went well.  However, mixed feelings.  This is my fourth one.  I walked in first time four years ago  in a dress, today with a cane and pants.  But I am walking better than I have due to the drug.

What did you do for yourself today?

See above.  I went to a tea, very girly.  My husband was wonderful and helped set up and breakdown.  There’s a jewelry boutique so I got to shop!  And then went to Odd Job afterwards for this and that.  I didn’t work.  It’s a real break.

What did I eat today and how did it make me feel – BAD.  It was tea!  I did do a smoothy before I went but scones, salmon tea sandwiches, chocolate.  Then Chinese food.  I have been seriously sliding and need to recommit to proper eating.  I need to max the opportunity the Ampyra has given me.

Did I exercise? What did I do? How did it feel – Still not going to the gym or Zumba. But I am walking more.  I will get to gym.  This was the least I have walked all week.

For whom or what are you grateful? What matters most in life?   Grateful for friends and the possibilities of new ones.  Grateful for the people I am meeting through the blog.  Ampyra.  New possibilities.

Do I have a higher purpose or driving force in my life?   Make a mission statement – Higher purpose still not defined.  Beginning to dream again.  Uh, maybe some sort of sharing

How long have I been treated with conventional medicine Ampyra,  two weeks.  And it is working.  I was able to walk longer and stronger.

The first time I had a symptom – June 2004 walking on the beach boardwalk

What symptoms are most troublesome – being off balance and not walking well, wearing ugly shoes and consequently ugly clothes

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this. Still!  And I think always.  It’s funny how we don’t take things seriously

How is stress level? It’s high.  Trying to tone it down.

What can I do tomorrow to make it better than today?   Start over.  It’s a new month. Have a different day.  And yes, I am thinking about things other than disease and death. I am thinking about art and new jobs and possibilities, flowers and spring.

Until next month.

Visiting the Doctor

Posted on by tresswann

Yes, sometimes I write about what’s going on condition-wise.  Tomorrow, I have a visit to the neurologist.  I haven’t been since July.  She likes to see me every three months.  I delayed for several reasons.  I thought I was  going to be an employee so I would have different insurance.  I was really hoping that by changing the way I eat, I would have positive change.  And frankly, I get tired and depressed hearing about the natural progression of the “disease”.  Last time, she told me I was more spiritual.  My unspoken response – “BS”

Well, tomorrow I am going back.  I am worse.  That’s another thing I don’t like, her denial that I am getting worse. It’s just natural.  One of the things we have been discussing is medication.  She has prescribed Ampyra for me but my former insurance didn’t cover it.  It costs $1300 – 1800 a month.  Now, I can get it for $60.  It works in 60% of the people.  I should be able to walk longer and faster.  I am terrified of drugs.  Also,  she can now prescribe meds that work on relapsing.  However, I have seen for some reason going that route only works for men.

In the meantime, I fell getting off subway on Thursday.  It’s getting harder and harder for me to commute.  My left leg is going.  On a positive note I should be able to get a better brace a.k.a. spectral leg for my right leg.  A new one may allow me to wear nicer shoes which will help my self – esteem.  Donna will know I hate, hate wearing shoes like the groundhog (inside reference) I don’t want to give up but struggling into work isn’t working for me. I like what I do but really don’t want to be there.  I took cabs last week except for the day I fell.  I can’t afford that.  Commutation already is hundreds a month.  I needed a cane to walk in my own tiny house this weekend.  Husband had a thought which may be valid.  I am a woman of a certain age and have been taking Estroven for years.  I forgot to buy some and have been without for a week.  Hot flashes and me don’t mix well.  Back on it so hopefully it will sort some of this out.  Also, my work stress has been through roof .  That’s a topic for another day.

Tomorrow we have a late appointment which means we see all the people who can’t even sit up being wheeled in, beyond depressing, the ghost of Christmas future.

Not optimistic.  Guess I can have a down day or so.

The Liebster Award Blog

Posted on by tresswann

liebster

Well,  better a little late than never.   I  do have to thank  Ms and Fabulous http://msandfabulous.com  for doing this for me.   I love reading her. It’s been really good for  me to think about some of these questions.

Why did you start your blog?

I started my blog because I have always had a journal/diary whatever.  As I’ve previously said in a way this is my Midas in the bulrushes moment.  It’s my way to vent and to process.  Ok, and to share.

What is your favorite color?

La vie en rose, of course.

What is your favorite dessert?

So many to love.  It  can  be seasonal.  Things I like Key Lime pie, Christmas pudding, trifle, cheesecake.  My current favorite mango coconut sorbet.

What are your top 3 favorite books?

Again, so many to choose and so many to love.  Well, Dickens at the top of the list.  So, I am thinking David Copperfield.   A Little Princess or The Secret Garden.  Hmmm.then….. Amy Tan is wonderful, Joanna Trollope, Ruth Rendell, Laura Lippmann, recent loves.  Maya Angelou –  I Know Why the Caged Bird Sings.  The Last Picture Show – Larry McMurtry.  Anything by Gail Godwin.  Barbara Pym – definitely shaped my consciousness.

What are your top 3 favorite movies?

Oh three so doesn’t work for me.  My favorites are transitory.  Movies I watch again and again….

Forrest Gump – I even paid to see it three times.  “The Object of My Affection,”  I keep on coming back to Easy Rider.  Did I love Peter Fonda?  “The Secret Life of Bees”,  “Jean de Fleurette and Manon”.  “Breaking Away”  – struggling to find yourself and recreate yourself.  Next week or next month,  maybe a different answer.

What is your favorite home-cooked meal/comfort food?

These are hard questions.  Eggplant parmigiana.  Stuffed flounder.  Solid Cadbury chocolate is comfort.

If you could speak another language, which one would it be?

Uh but I do.  I love French.  I wanted to take Latin and my parents put down their feet and  I threw one of the few hissies of my life and ended up in French.  It changed my life.  I have a facility for language and do Italian, Spanish and German.  In high school, I wanted to do Farsi and Russian.  Japanese would be useful in my job now.  Language is like extra vocabulary.  I believe knowing only one language is limiting.  My father used to make sure I knew how to say “I am American.  I need an attorney” in any country I was traveling to.   And me, personally,  I wanted to be able to understand “Let’s kill that little girl over there”.  I have enjoyed the freedom speaking other languages has given me.

If you were a superhero, what would your super power be?

Super power.  It’s always a toss up between invisibility and flying.  Right now,  flying trumps all.  It would be glorious to feel free, soaring and weightless instead of the careful measured tread I have to take.  And to be carefree.  Peter Pan calls me and don’t tell me he wasn’t a super hero.  He must have been the first.

What is one piece of advice you would give someone just starting a blog?

The same advice that was given to me – take a course.  I learned a lot from Blogging 101.  The other piece – read other people’s blogs.  It helps.

Which song would you pick to be your personal theme song?

Ah, these questions with no clear answers.  I always thought the Rolling Stones “Satisfaction”  was my theme song, flawed for obvious reasons.  When I was a college, Don McLean’s “Everybody Loves Me Baby” really worked.  I was going through a bad time and Bruce Springsteen’s Badlands. “Thunder Road” obsessively and constantly.  “it’s a town full of losers and I am pulling out of here to win” (See Levittown (read childhood)  comment)  but it’s so much more.   Hangfire by the Stones saved my life somewhere in the 80’s. Billy Joel’s “Only the Good Die Young” is a consistent theme.  I am a Levittown girl.   Joni Mitchell’s Cactus Tree and/or Coyote the last few years.  Van Morrison reaches my soul – Caravan.  Lately,  I have been playing the Allman’s Melissa on my ipod and Jason Isbell’s Live Oak.   The soundtrack of my life.   Is there a theme to all this music,  maybe someone else will see it.

Which do you prefer: bare lips, chapstick/lip balm, lip gloss, or lipstick?

Lipstick.  Finally, a definitive answer.  But I can’t live without eyeliner!

Eleven Random Facts About Me:  (Jessica, this stuff is hard!)

My favorite place to be is on the beach, any beach.  I miss the ocean all the time.  This condition has stopped me from walking on the beach.

I like my chocolate  and liquor straight and unadulterated.  Read that – not in cake or ice cream.  No juice, no soda.  Maybe a little ice.

I used to fit a terrorist profile in Italy.  I was single and travelled all over, staying usually only a night or two, all over Europe.

I love to cook.  This was unusual for my family as on my maternal side, they had servants and ladies didn’t cook and on my paternal side, well, maybe it was cooking but it certainly wasn’t good.

I can’t stand wearing red, pink or coral nail polish.  Blues, purples, greens, silvers and golds for me.

I hate red roses. They symbolize death to me.

Being married and staying married is something I never thought I would or could do.

I have a dish fetish.  I don’t know how many sets I have now.  I moved out of my mother’s because I had seven sets under the bed and in the closet.

I am a secret workaholic.  I do it in bunny slippers.

I am terrified of being a little old lady with cats.

I have great faith.

I nominate:

OnBeauty https://onculturebeauty.wordpress.com

Deuce2treble3quinn4 https://deuce2treble3quinn4.wordpress.com/

EmmaLisa3 http://emmalisa3.com/

F you, MS https://fyoums.wordpress.com/

Kelzbelzphotography https://kelzbelzphotography.wordpress.com

MyBrainisMessingwithMyHead mybrainismessingwithmyhead.wordpress.com

My questions:

  1. Why blog?
  2. If you could be anywhere but here now, where would that be?
  1. Traditional Medicine or Alternative?
  2. Is make-up part of your armour?
  3. What genre do you like to read best?
  4. Last film you saw and why?
  1. Favorite holiday?
  1. What is your favorite place you have visited?
  1. Did you like high school (or equivalent)?
  1. What scares you most?
  1. What advice would you give to someone starting a blog?

Official Rules

If you have been nominated for The Liebster Award, AND YOU CHOOSE TO ACCEPT IT, write a blog post about the Liebster Award in which you:

  1. Thank the person that nominated you, and post a link to their blog on your blog.
  2. Display the award on your blog.
  1. Answer the 11 questions about yourself provided to you by the person who nominated you.
  1. Provide 11 random facts about yourself.
  2. Nominate 5-11 blogs that you feel deserve the award, who have less than 200 followers.
  3. Create a new list of questions for the bloggers to answer.
  4. List these rules in your post.
  1. Inform the bloggers that you nominated that they have been nominated for the Liebster award and provide a link for them to your post.

April Warrior Check In

Posted on by tresswann

Back for April:

How do I feel today – Perkier today than in a couple of weeks.  I have had a lot of stress, frustration and pressure around my work.  I think my husband is slipping.  He definitely did and now I have no trust.  And although today was the first day all week, I could walk freely,  I took a bad fall in the subway.  My husband was with me and he couldn’t stop it. People always bad mouth New Yorkers but a man helped my husband pick me up off the platform and people held the elevator for me and this was rush hour!  I walked more today than all week combined.  I thought I really hurt myself.  We will see.

What did you do for yourself today?

Well, I blogged,  had lunch with some friends.  I am not working tomorrow, resting, reading and doing fun things.

What did I eat today and how did it make me feel – Mixed, though mostly good.  Granola (homemade) for breakfast and snack,  orange,  uh two Lindt chocs,  sushi for dinner and half a slice of my husband’s pizza.  I feel it, gave me a headache

Did I exercise? What did I do? How did it feel – Still not going to the gym or Zumba.  Due to more falls back to square one with abs.  Have been on treadmill and Wii.  Need to find the original DVD because of the balance issues.

For whom or what are you grateful? What matters most in life?   Grateful that I didn’t seriously hurt myself in my fall.  Grateful for the kindness of strangers.  Friends and family, health are what matters most.

Do I have a higher purpose or driving force in my life?   Make a mission statement – Higher purpose still not defined.  Beginning to dream again.  Too heavy for me.

How long have I been treated with conventional medicine Not this month but I have appointment with doctor on Tuesday and am going to try for the Ampyra.  And yes,  I am going to do my best to eat right this month

The first time I had a symptom – June 2004 walking on the beach boardwalk

What symptoms are most troublesome – Getting really slow and bad at walking and not being able to get on and off the train.

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this.

How is stress level? It’s high.  Now I am really frightened about how things are going down.

What can I do tomorrow to make it better than today?   Start over.  It’s a new month. Rest and do art.  Eat right

Until next month.

Poster Children

Posted on by tresswann

I have a thing about poster “children”.  When I received my initial diagnosis, me being me, I said let me learn everything about it, I can.  I am notorious for doing my homework.  First thing, we reached out to the MS society.  My diagnosis, which I reject or maybe deny, is PPMS.    Actually, I reject but that’s another day.  So we receive their packet.   Talk about poster children.  The PPMS brochure has woman in a scooter and she talks about how wonderful it is now that she has her scooter.  F’ing excuse me?  Not only is this not what I want to hear, it’s a piss poor message as far as I am concerned.  So, how I am going to cope and fight with this disease is bop around on a scooter?  Really?  Not me, not yet, probably God’s willing not ever.  We start with surrender and acceptance?  Not working for me and I don’t think it should!  We scratch MS society off our list and decide to fly solo.

Next, just this month we receive the newsletter from the Institute that’s treating me.  Monitoring is actually a better description.  See inspiring story on page…  Flip to page.  Another woman saying she wept buckets when they told her to use a cane  but now it is sooo wonderful.  Well, I didn’t weep when we had that conversation. I argued and acquiesced.  I don’t cry as a rule in front of other people.  I work really hard at not crying about this.  When I do, it’s usually frustration and rage as oppose to fear.  I have to use a cane now most of the time in public and it is so not wonderful.  I understand I do need to be safe.

What kind of message is being sent?  Are we Victorian?  Am I supposed to lie back and think of England?  I get it about false hope.  But what about possibilities and determination?  They don’t seem to fit in this “traditional” setting.  Well, I worked for years in fashion and was always considered trendy so this is my take.  Screw these “poster children”,  my trend is not to go quietly into the night or anywhere, not to surrender and not to accept defeat.

Men, Gypsies and a Funeral

Posted on by tresswann

As I said, Joebe passed away last week.   He always called me a Gypsy.  And it wasn’t always positive.    He used to tease me that I could and did move all my belongings in a cargo van.   I had nothing and was free.  Since I married this time, I can no longer move in a cargo van.  I am weighted with both possessions and responsibilities.

Joebe said I was a gypsy and committed to nothing.    He was of an age where he also meant it in the non PC sense of it.  I was amoral, free, uncommitted.  I remember the gypsies of my youth.  I spent the first few years of my life in Coney Island.  The Gypsies would come every spring.  We were always warned that they stole little children and we had better stay close.

Sometimes I didn’t mind when he called me Gypsy because it meant that I was still holding onto that part of me that was uniquely me.  Lord knows he tried to change me.   Like I have said, I have been trying so hard to remember the happy times.  I really can’t.  Every memory just twists.

I met him dancing.  And he was a great dancer.  That’s what won me over. But we didn’t dance because of his jealousy.

Also, after I left my first husband, I wanted to go out with a man who took me to dinner with tablecloths.  My first husband’s idea of dinner out was Fuddrucker’s.  Joebe took me to nice dinners but they were unpleasant as he always accused me of flirting with the busboy or the waiter.   It became easier not to go.

I have always worked with men and gotten along very well with them.  It’s part of the all boy college deal.  During that time, I worked with men and I used to go out with them for what we called burgers and a belt.  I used to stay at my parents and tell Joebe I was eating with them.  With anyone else I could have and would have told the truth.

At his daughter’s rehearsal dinner,  I sat next to her, not her mother.  By this time, I had left him.  But he was always telling me “Pretend to be a family.”  He had had issues with his daughter and had not wanted to go to the wedding. I insisted but I was the one who walked out of the dinner.(I did go to the wedding)  She is 10 years younger than me almost to the day.    So, I would say we really didn’t get on.

Sunday,  I walked into the funeral home.  I think it’s the first time I saw her since her wedding.  She had been the one to initially call me and tell me that her father was in intensive care and she wasn’t sure she had the right person. I got her brother when I returned the call.  She broke away from the people she was with and grabbed me and began to sob.  “Susan, when we went into the house, there was a huge picture of you in his bedroom.  My dad always loved you.  He never stopped loving you.”  This was so hard to hear.  First of all, within weeks of our getting together he practically demanded that I tell him I loved him.  Different generations – what’s love got to do with it.  I was the gypsy rolling with the tide, looking for my good time.  I never told my first husband I loved him.  It’s not something I do.  I hold love close to my heart, my hard gypsy heart.

It has made me reflect what impact do we really have on others?  When I left my first husband, he was more upset I thought about losing the curtains (I took them off the windows) than me.  Joebe told me we were supposed to get married and he was going to be short the money I gave him towards rent.  We did things together afterwards. i.e. daughter’s wedding but I wouldn’t say we were friends.  I do love my friends.    I can’t ask him what was going on because he is dead.  It’s sort of like an open window but one that you really can’t see through.

Of course,  there was the rest of the family to see.  I did love his granddaughter and losing her when I left him broke my heart.  I kept distance from my now husband’s children and his nieces because I didn’t want that hurt again.  I am loosening up a bit and admitting that we can love each other.  Seeing Gabby almost made me cry.  She’s just about grown up and of course, doesn’t remember me.

Now, men.  My husband and I have had many problems and we have come out alright.  Our marriage is strong.  He stood next to me and listened to hearing that another man had always loved me.  He walked into a room of strangers to him that had been family to me.  He literally held me up.  No cane and no one said anything about my walking.  He totally supported me in all ways.

Someone who has this condition said something along the lines of how do you forget you have this?  Well, Sunday once my husband helped me in that door, my condition was the last thing on my mind.  I am larger than this.

So, I am beginning to have memories, not bad ones, just memories.   I hear his voice in my head.  And I am beginning to realize that I’ll never see or hear him again.  That’s the way this works. He’s not the first relationship that I have lost but he was the only one I lived with.  You always think you will see them again and you can be like Bellbottom blues or just surviving.  I was always tickled that I survived Joebe.  Now, there’s this unknown area.

And here’s what’s weird. Joebe gave me amber earrings.  I wear them at least once a week.  I went to put them in on Monday and one fell on the floor and shattered.  Gypsies and dreams.

Mortality, Perspective and Balance

Posted on by tresswann

Mortality has been on my mind a lot.  It’s a milestone year for me and I am feeling it, particularly since my mobility is impaired and seems to be worsening.  I hope I have many years ahead of me, good years but you just don’t know.  I live fairly locally to where I grew up so I was reading the local obituaries to see whose parents had died.  And then people’s ages were getting too close to mine and I even knew some of them.  It started to drag me down so I stopped.

Last week I received a call that one of my exes had a massive heart attack and was in a medically induced coma and the prognosis was not good.  This was someone I had lived with for a few years.  When I left him, he said “But we were going to get married”  Nice of him to let me know.  He wasn’t the first.  I left someone else who then showed me a polaroid of the engagement ring he was paying off on for me.

Joebe passed away on Thursday night and I got the call Friday.  I really thought he was stubborn and cantankerous enough to come out of this.  He never regained consciousness.  This is who he was, he thought he was having a heart attack so he drove himself to the doctor.  Just what they tell you not to do.  My husband has been upset because all week, of course,  Joebe has been in my thoughts.  I have been reminiscing. He doesn’t mind the reminiscing.  They are not happy memories. He does not like that.   I cannot help it.  I am trying hard to remember some happy times.  He was controlling and emotionally abusive.  It is what it is and he was physically abusive just that one time.  I tried explaining to my husband that remembering the bad times is not bad.  I put on the card for the flowers “You changed my life” and he did.  I learned all kinds of things about myself.  I learned how much stronger I was than I thought.

It’s ironic, it’s March.  I met him in March, 21 or 22 years ago.  I never go out on St. Pat’s but a friend, Joe S asked me to go with him as a favor to some event or other.  Joe T called and asked me to hang out so I said next week.  Next week, I went to hang with Joe T and met Joebe.  My parents couldn’t stand him as he was much older than me.  I was living at home after my first marriage broke up and he would call and say “It’s Joe”  and they would say “Which one?”  Drove him insane.  He was jealous and insecure.  He did make me look at where I was jobwise.  I had fallen on really bad times when my first marriage had broken up and was answering phones.  I applied for another job like that and he told me if I kept on looking at the same jobs I would be in the same place.  I left him when I got the job I have now.  At the time I jumped my salary by 50%.  With bonuses the first year, I made more than he did.  We never really stopped talking and this truly irked him, a man of his age being bested by a little girl. He never thought I was very smart and I am.  I am one of the first women at an all boys school and he always said that I got in because I was a girl.  We went to a 25th anniversary of the admission of women and the former president said that admissions my year were blind.  It was incredibly liberating.  Joebe scoffed and said they lied.

He bought me a house.  One of the reasons he bought this particular house was the day we looked at it, three swans floated up.  It was on water and I am tresswann.

I am preparing to go to his funeral this afternoon with my husband.  My husband always maintains that Joebe was my husband.  I lived with him longer than I did my first husband and had more of a relationship with him.

I have kept on saying all week, this is weird.  This afternoon is going to be weird.  I was at the wedding of both of his children, the christening of two of his three grandchildren.  He was one of 5 brothers.  The family liked me.  I have not seen these people in years.  I am going to have to walk into this with a cane.  My husband says to leave the cane behind and he will hold me.  I am blessed.  Things work out the way they are supposed to work out.  I had a really close friend die when I was with Joebe.  He knew him.  He refused to come with me to the wake or funeral.  Walking in alone was one of the hardest things I had done up to that point  in my life.  See, what doesn’t kill you will make you stronger.  Today, I will not be alone.  I will be supported by love.

So, perspective too.  On Thursday, I received a call from my agent indicating that he had been told I am not getting a raise for this year.  Can I say livid is too mild a word?  Yes, I worked remotely for most of January and February but I put in mega hours.  I give heart and soul and do excellent work.  I am not just saying this.  And I am hurt by this.  I will address it when I get into the office this week.  But coming in conjunction with Joebe’s death, it’s time to take another look.  If they think I am doing a less than adequate job which is what a non raise indicates to me then I can and will cut back.  If I cut my hours, I cut my income.  What’s money at the end of the day as long as the bills are paid?  Working less hours will let me get home earlier and when I am home earlier and not putting in extra hours, I can do more “me” stuff.  How about the gym? How about art and writing?

I am a Libra and as odd as it sounds, I need to be in balance.  I have been out of balance.  This manifests itself in my health.  Oh, and a side note on stress, I left Joebe and started a new job all in the same month, not too crazy.  I am moving towards this milestone birthday with trepidation.  I am taking these two events as a sign to get back in balance.  Maybe regain my physical sense of balance. We truly do not know when our last day will be.  I don’t want the rest of whatever time I have to be filled with regrets or what ifs.   Carpe Diem.

March Warrior Check In

Posted on by tresswann

Back for March:

How do I feel today – Mixed blues.  Despite the fall and my face, we ran around a lot today.  First thing, we went to Trader Joe’s and Omaha Steaks.  No, no meat for me.  Husband’s youngest just got his first apartment and we filled their freezer.  Then on to the Chocolate Duck, again not for me, getting a class for a niece and Easter Egg supplies for the kids.  Then on to sister in laws to drop off things and pick up Girl Scout cookies.  Not for me.  I don’t eat them, ever.  Visit kids with food, flowers and pyrex for housewarming.   I gimped through everything very frustrating and depressing but I still get going.

What did you do for yourself today?

Well, I blogged and then I am going to make a wrapped bracelet.  And it was fun shopping.

What did I eat today and how did it make me feel – Sigh.  Not good.  I started the morning with coffee and a piece of Christmas pudding.  Toffee crunch after trader Joe’s.  A streusel apple spelt muffin.  Quinoa chips.  Dare I say, steamed pork buns for dinner?  But I have been really good all week, smoothies and salads

Did I exercise? What did I do? How did it feel – Still not going to the gym or Zumba.  Still housebound, still doing the stepper and recently added treadmill.  I am working my physical therapy back in.  Hurt in falls so I am back to square one with Abs.

For whom or what are you grateful? What matters most in life? Grateful as usual to be warm safe and dry.  Grateful that I didn’t seriously hurt myself in my fall.  Grateful for the kindness of strangers.  And my job.  And my stepsons are awesome.

Do I have a higher purpose or driving force in my life?   Make a mission statement – Higher purpose still not defined.  Beginning to dream again

How long have I been treated with conventional medicine Not this month but I think I need to go to the doctore.

The first time I had a symptom – June 2004 walking on the beach boardwalk

What symptoms are most troublesome – Duh, gradually losing my ability to walk and being dependent.  And the falling.

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this.

How is stress level? It’s high.  Now I am really frightened about how things are going down.

What can I do tomorrow to make it better than today?   Start over.  It’s a new month.  I still have new days.

Until next month.

Fatigue, Fantasies and Husbands

Posted on by tresswann

I fantasize about sleep.   I count days and hours until I can sleep.  I roll over in bed and think either this time tomorrow I’ll be sleeping or this time tomorrow I’ll be awake.    I have to get up for work some time between say 4:10 a.m. and 4:30 a.m. four mornings a week.  One of the effects of the condition I have is supposed to be fatigue.  However,   my doctors say with the hours I keep, who can tell?  I see their heads nod and eye droop when I describe my hours and my schedule.  They say anyone would be fatigued given that schedule.  And I am getting older.  It’s just a fact.  I have read that as we age, we need less sleep.  NOT!  Ok, so maybe we don’t need it to grow, that doesn’t mean our bodies and minds don’t want it.

I keep memories of a good sleep like notes on a good bottle of wine.  I still remember the sweet deepness of sleep the night of Hurricane Sandy.  I had one almost as good the night of a blizzard last month.

I guard my sleep ferociously.

I have been to the office only three times this month.  Yes, a few hours more sleep but much less walking.  Here’s my vicious cycle, the less I walk, the less I am able to walk.   We have been trying to compensate by having me do the stepper every night but still I have been coming in at most around 5,000 steps.  A normal day for me at work is over 7,000 and I used to get to 10,000 or more.    I did go into work this past Thursday and could barely walk.  It was bad.  My husband doesn’t understand that I just can’t stop when I am working remotely and do 15 minutes on the stepper. Plus, it’s not the same as walking.  I have tried to get in 30 active minutes a day.

Yesterday, we set up the treadmill upstairs.  My plan is to go on it in the morning when I drink my coffee.  We’ll see.    Yesterday I struggled to do 5 minutes on it.  My goal for today is 6 minutes.

Confession – I have been lax with my PT exercises.  I was really on it for awhile and then it just started fading away.  I was doing abs every night and then I fell.  It hurt too much.  I am hoping to start again this evening.

Cut to last night.  3:50 a.m.  Husband gets up.  “I have been thinking and I have decided”.  This is when I call him Jack because he sounds just like his father.  ” You know I dream things through, you know how I used to help you with your exercises?  Well, I really can’t now because of the operation”.  Then he went through all the exercises I am supposed to do and what he could or could not do.  Told me I couldn’t do 10,000 steps today as I had only done 3500 yesterday but I would do 6000 today.  I would do the PT twice on weekends but not during the week as I certainly can’t get up before 4.  And maybe, he will create a spreadsheet to track everything.  Now I know he’s talking in his sleep because spreadsheet is not a word he uses.  He has the remarkable ability to have complete literate conversations when he is completely asleep.   And I am looking at the clock thinking “this time tomorrow I will have 20 minutes more to sleep”.  I can’t hit him because of the operation.  I drifted off.  This morning he has a vague recollection of the whole thing but says it goes to show I am always thinking about you.