chronic illness

sell by date

Featured by tresswann

Most of my life I’ve been obsessed with the obituaries. Children have a natural fascination with death and gore. The first headline I remember reading was about Marilyn Monroe’s death. Well, it was easy. I guessed from the size of the words. I liked reading the obituaries because they were little stories. I have always liked stories. After a while, I stopped reading them. There were better stories to read and it was slightly morbid.

I started reading them again in late middle age. This was because I had to see who among my friends parents had passed away.

I stopped reading that because it was easier to find information on Facebook.

Now, I view the ages of people who have died when I read the news. I calculate how much older or younger they are than me. Are they my age? Maybe they are five years older or eight years older. If they die at 93, it means they are 25 years older. That is such a long time, but it is such a short time.

It’s like life. There are very few transitions. At one time, I went from attending my friends’ weddings to attending their children’s weddings. There was no break in between. The obituaries have become that way. It is not so much the obituaries as Facebook. It seems that every week someone from my childhood dies. These are usually not my friends. My friends have not had a timeline. They have been leaving since my 20s. It has been a joke that men who date me and leave me die. Just about all my past relationships are literally dead. It no longer upsets me. It’s just a fact.

I was brought up not to disclose my age in public. I have been very lucky in that for the most part I do not look my age. I don’t believe that is true anymore, but people assure me that they are surprised at how old I am. My mother always pretended to be 10 years younger than she really was and she always got away with it. One of her friends was shocked to find out when my mother passed that she was the same age as her mother, exactly. They were literally born on the same day. The age numbers never bothered me because I did have that genetic gift. However, even though I must say that I looked fantastic at 60, it felt off putting somehow. 65 was a game changer. I moved into the last checkbox the demographic selection. I began to feel that time was finite.

I was at a school reunion about 20 years ago. One of my classmates said, “We’d better make the best of it. We are in the last third of our life.” I wasn’t buying it. I felt young and vital. Indeed, I was. I laughed at his statement at the time but once I passed the last milestone birthday, it became very real to me. Time had finally become finite. There was going to be an end to the chapter. And as I had discovered when I was 18, I was not going to know what it was.

There is a group for women over 50. In one of their promotional videos, there is a woman who wants to stay “juicy”. I was definitely juicy at 50. I was anxious to join that group. I went to a local organizing meeting and they tried turning me away at the door. “Honey, this group is for women over 50.” It reminded me of the time that a boyfriend and I went with the gay couple to a gay bar. Another hand came in between us, “This is a gay bar, kids.”   

Recently, I heard on my radio station that the average life expectancy in the US right now is 77.9 years. Time is finite. I now have a sell by date. It’s not the expiration date. We have been educated that the sell by date really means “best used by”. The same can even be said for the expiration date. These dates have become very real for me. The clock is ticking.

My mother came from a family that had “gifts”. She wanted no part of that. Fortune telling and future telling were strongly looked down on. She always related the story of someone having her palm read and being told that they could not find the future line and walking out and being killed immediately by a bus. She believed that one did not need to know about the future. It makes sense. Every day should be lived as if it is your last. This is easier said than done. None of us can know when our time is over. Just because statistics say I only have another nine years means nothing.

What I am going to do with those remaining years is important. For quite some time, I have been considering the best use of my time every day. This now has taken on a greater urgency. My friends and I laugh that time is moving so quickly. One week starts before it seems the previous one has ended. Days blur. Remember when you were a child and it seemed like forever until Christmas? Or your birthday? I heard something recently that said time moves slower when you were younger because you were learning something every day. I still try to learn something every day and sometimes I actually do. However, it does not stop the gallop of time.

I feel an enormous amount of pressure now to make the best use of my time. It is interesting to consider what that might be. I have been writing for years. I had a manager 20 years ago who told me I never complete anything. I’ve always tried to be open to criticisms from managers from whom I am parting. For example, my first manager in fashion told me I was not proactive enough. I did not make that mistake again. However, I have to concede that I do not finish things. I’ve been thinking about the reasons why this might be. My father was a writer and very critical of me but he has been gone for 20 years. Plus, in his last year of life, he told me not to wait until he died to write but to do it now. I did not follow his advice. I am writing now. I am still not finishing. This is something I must do. I have always maintained that fear is natural and must be acknowledged. Fear should not stop you. I have been afraid in my life many times and just sucked it up and got on with it. However, submitting my writing for publication totally terrifies me in a way that I am not familiar. I need to get this done. My grandmother always said that I lived on “put off street”. I need to move!

There are other considerations as well. I love to read. I have been reading less in later years. It is something that soothes me. I used to read several books a week. This year, it looks like it will be only one a week. I have more time than when I was working So what is the problem? How do I find the time for my preferred drug?

Working. I have finally decided not to look for employment. This has been a very difficult decision. It has been based more on my physical condition than attitude and need. Now that I have my sell by date, it definitely falls to the bottom of the pile. I feel a certain amount of grace because my time is limited. This does not mean that I will not work for money again. If I do work again for money, it will be something that comes to me not something that I seek. Who knows? I may even sell a story or two.

Move is a word that’s problematic for me. I have become increasingly immobile. This has also led me to the decision to just stop actively looking for work. My body is betraying me. I thought for the most part I had treated it well. OK, I have had a massive chocolate addiction. I have been able to get it somewhat in check in the last decade or so. I was not pleasingly plump for a while. This usually happened when I was unhappy. I have had periods of unhappiness throughout my life. Plus, it was a delayed adolescent rebellion. Weight was always important to my parents because my aunts were morbidly obese and my mother was manic about her weight and appearance. However, only four short years ago when I was examined by a Medicare physician, I was told that I was one of the healthiest Americans he had encountered. I exercised more or less faithfully for most of my life. If I didn’t belong to a gym, I did an enormous amount of walking. Walking has always been my happy place. I no longer have that. My condition is impacting all areas of my life. I can no longer type, cook or walk. We all know that age will catch up to us eventually. My mother exercised regularly until just after her 79th birthday. Her deterioration was sudden and unexpected. She had definitely done everything right. However, we all realize, even she did, that as we age certain things slow. I am not slowed so much has come to a grinding halt. I do my best not to let it stop me. Of course, it does. What cannot be cured must be endured.

I wish someone would have let me know that I would not always be able to feel my body moving quickly. That one day I would no longer be able to feel the wet sand on my bare feet as I walked along the water’s edge. It’s funny how lust changes along the way. I used to lust over men, clothing and money. Now, I lust after shoes. I see people on TV or in the street and I want their shoes! I watch programs with beautiful stairways and I mourn. No one would have been able to tell me that when I was younger.

Clothing is another thing that changed for me as I got older. I used to be very forward. I had my pulse on something. It was undefined but I usually was a step ahead. Then I became a sort of contemporary classic. My mother had told me that I would grow into things. So, I began to rock Chanel type jackets, Calvin Klein pantsuits, beautiful suits in jeweled colors. Elastic waisted pants were for old fat people or going to the gym. Now, the least path of resistance is elastic. I do not like what I wear. I am succumbing to old age.

Another thing I was brought up to do was to give back. I still do that. I tutor a child. This gives me great joy. It is a gift to help a child be able to read and thus discover new worlds and new possibilities. I will not give this up. It is worth the time. I also volunteer. Right now, I am on my HOA board. It almost amuses me because I bring my experience to the table. I am seen as an older person with experience. It seems like only the other day that I was the firebrand on the board demanding change. Again, there was no transition. Perhaps this is the way life is.

I am actually comforted by the idea of a sell by date. It gives my life a shape. One of the things I had decided some months back, was to try and do something nice each day for someone else. It is selfish. I have no natural children. I do have “bonus” children. I have little cousins and nieces by marriage. These are the closest I have come to children. The reason I bring this up is that I’m concerned about the afterlife. I am part Jewish and to paraphrase one of the prayers for the dead, “you live on in memory of what you have done.” It’s not completely rational but I would like my memory to live on for another generation. I do not know how to explain this. I want my time on this earth to have meant something.

I am looking forward to embracing my remaining years. There is so much to do!

Two Little Girls in Green Dresses and…

Posted on by tresswann

This is about two little girls in green dresses, families, a school dance and how it changed lives, and its reverberations.

Amazingly, at least to me, this story starts 50 years ago.

I grew up in Levittown in the era of large families.  It was a time of stricter Catholicism and an innocent optimism. Birth control was restricted and popping a pill was not yet a common thing. There were these huge, iconic families with children in every grade. People said that Levittown looked alike.  It wasn’t the houses.  It was the children, families of  little rubber stamps.  About 10 years ago, I went to a party of Levittown people.  One of the men asked, “Do you know who I am?”  An interesting question that I have heard throughout the years. There were at least 3 – 4 of them, one older than me, one my age, one my brother’s “You are one of the P brothers.”  We all laughed and he told me which one he was.  He was my age.

Another family was the Gs.  I don’t know how many there were but there was my age and brackets. B had a crush on  me when he was in kindergarten and I must have been in third grade.  Upon seeing me at a reunion decades later, he asked, “Don’t you feel anything between us?” “Yes, I do.  Your wife.”  His brother T was/is my age.  The family was large, popular and unbridled.  I remember Mrs. G writing a letter to the local paper about her children being able to look into what passed for a strip club at the time, at 9:30 at night!  My thought was why were they out then when that was my bedtime.  T was popular and arrogant with that teenage boy swagger.

He was part of a crowd of those boys.  Every school has them, in every year.  They band together in their adorable cuteness.  Girls love them, for the most part unrequitedly.  Teachers pander to them in order for their classes to be unencumbered with chaos and testosterone. They rule the halls, the classrooms and the schoolyards for that brief, shining moment in their lives.  It’s been my experience, for the most part, that those charmed boys and girls, once school is behind us, morph into fatness, polyester and, for the guys, baldness. I had liked T in 2nd and 3rd grade but outgrew it.  By the time junior high school rolled around, I steered clear of him and those boys. They weren’t part of my world and I didn’t want them to be.

I met Sue(no initials here, we share the same name) in the fall of 9th grade. She had transferred from Catholic school.  We were introduced because we had the same name. 9th grade is a cusp between the child and the young adult.  We shared a name so we must have similarities. Well, we did both have brown hair, wore glasses and were “nice” girls.

There was a holiday dance that year.  These were simple affairs. It was in the cafeteria.  There may have been crepe paper.  The lighting was dimmed.  There were records with pop tunes.  I had attended the end of school dance the previous spring, worn white lipstick for the first time and had had fun with my friends.  We were nerds although the term was not in use then.  I believe we were known as  weirdos.  We were the advanced class and in many cases had known each other all our lives.  When you grow up as closely as that, you have a defined role and place.  However, there was still the remote possibility that things might change. A dance held magic, unnamed possibilities for a girl like me.  Glamour was an undercurrent. It was still the era where girls could not wear pants, let alone jeans to school.  Mini skirts had arrived but were not yet micro. 

The afternoon of the dance, E asked me if I wanted to go?  Sure. I didn’t take it as a date.  My first real date happened on the last day of 11th grade. I had known E since we were both  7.  He was funny and nice.  He liked comic books.  He was thin but was gaining a bit of weight  He was blond.  I don’t particularly care for blond guys.  Apparently, E saw it as a date, as I found out later.  We were driven separately.  In those days, once you arrived at the dance, you stayed.  Your coats were taken and left in the gym.  It was only E and I from our regular set that night.  As soon as the coats were locked and we entered the cafeteria, E had a severe asthma attack and had to go home. This apparently was brought on by the pressure of the “date”.  Instead of telling a teacher, we had come together which would have allowed me to call my parents and leave; I was adolescent, awkward. embarrassed and found myself to a folding metal chair at the edge of the dance floor.

I had been excited about going to this dance. It was an occasion.  Since, it was late notice, my mother let me wear her green sheath. Since it was hers,  I felt it was the height of sophistication.  She gave me a long chain necklace with green stones.  I had graduated from white lipstick to pearlized pink.  I have always had my own specific sense of style. In my mind’s eye, I was adult and glamorous. Teenagers at that time in Levittown went to Mays Department Stores for their clothes.  Everyone wore the same thing.  This was not me.  It accentuated my differences. The houses may not have been the same but at times, it appeared the people were uniform.  So, there I was in my version of sophistication, sitting on the edge of the dance floor, counting the hours and minutes until I could escape.  Counting the minutes is something that I later learned from Sue to do correctly.  A group of about three of those boys approached.  The only one I remember after all these years was the ringleader, T.  Those boys mocked me, asked me to dance, grabbed at me, made apelike motions.  It was awful.  I sat there, mortified. The chaperones didn’t materialize.  A was a stocky boy.  Boys are not fat.  A was middle of the road.  He was smart. A was also brave.  He stepped up to those boys.  “Leave her alone.  Just leave her alone.” They were stunned. And then, Sue swept in.  “You are in a green dress, so am I.  C’mon and dance with us.”  Sue was in a moss green chiffon dress that had been cut down, if I remember, from a wedding. An age of glamor, mystery and possibility. Two little girls in green dresses;  she led me by the hand to a circle of girls dancing .  The evening eventually ended.  I went home, cried hysterically and threw up.  My parents declared I was never to go to another dance again.  I never did until I reached college.

the green dress

It was the start of a decades long friendship for Sue and I.  She has taught me so much about how to live my life.  I carry those lessons with me. Counting the time lets me cope with infusions and MRIs.  Okay, I also sleep through MRIs. She taught me about connecting to life and to others.  Reaching out and being brave can change a life.

We ran into A at a reunion some years back and thanked him for that evening.  He remembered! He also remembered that he was slightly scared because he, too had to go against those boys.  It was the right thing to do. He is still a lovely man.

T is in my life.  We saw each other at our 10th reunion.  We spoke.  I met his wife.  He was adult as was I. Years later and I don’t remember how, he asked me to read a play he was writing and subsequently had produced.  He knew that I read tons and attended lots of theater.  We became distant friends on Facebook.

All three of us have faced  significant health issues and situations.  It has been a true and deep comfort to share with people who knew you when and before. We weren’t always broken.  When we talk, I picture us as we used to be. We are young and healthy.

T is now my health insurance broker yet we speak of many things.  “Of shoes — and ships — and sealing–wax —. Of cabbages — and kings —. And why the sea is boiling hot —. And whether pigs have wings.”  We have a common past.  It’s not only a shared geographic past but of a certain time and place, a shared youth.  We have never spoken of that dance.  I don’t even believe he remembers it.  We talk of people.  And if you are reading this T, this is what I want to say, not what I should say. We have had conversations around that topic. I love that my life moved on and can still include that boy.

I recently came across that green dress.  Yes, I still have it although I had forgotten.  It looks so tiny.  It’s hard to imagine my mother wearing it; let alone me.  I kept it for all it represented to me – sophistication, pain, strength, deep and abiding friendship.  Two little girls in green dresses at a dance  and a lifetime.

Out of Work Summers – Beach and Bleach

Posted on by tresswann

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.

 

June/July 2016 Check In

Posted on by tresswann

goofed.  I started this in the first few days of June and then stopped.  I have been blue, angry and pre-occupied.  It should be easier not working to be timely and thorough but somehow it’s not.  I am looking for the spark and the peace that seem to have disappeared.

Wow, I was checking my records and saw that last year I was interviewing and bombing out. too!

How did I feel this past Month?

Still blue.  There was no activity at all job wise.  This is depressing .  I also feel my health deteriorating.  I am not sure if this is a symptom.   The WEDDING  looms.  My stepson is getting married and it’s just going to be ugly on all kinds of levels.  And I continued to be blue through June also although jobs picked up.  I interviewed at three companies in two days and came up empty.  I was reminded I have a major reunion coming up next year.  I want to be able to walk and don’t see that happening.  My friends are retiring and/or having grandchildren so I am fighting regrets.

What did you do for yourself this month?

In May, I  did attend a professional association event.  I was surprised that I liked it.  Goes to show that sometimes you have to let go of assumptions. I also realized  that I had let part of my life go.  I have been  isolated.  I did sign up for two events back to back in June and then didn’t go.  The first one was for a cocktail party at a professional association. It was at a golf club.  The last time I was there was over 20 years ago in a blizzard.  The late Joebe had a DUI conviction and was finishing community service there. It’s beautiful, wooded and slightly hilly.  It was not fun driving his Camarro.   At the last moment last month, T decided to come with me and sit in the car as he thought due to said hilliness, I might need assistance getting in.  It was a beautiful evening with bad directions.  When we finally found the clubhouse there was only valet parking or far parking. I  would have been shot by the time I walked in so we left.  The next night was another professional event but I wimped out as it was rush hour and the Long Island Expressway.  I grew up with parents who had a terror of the expressway.  I have been working through  it but not at my strongest.

Trying to get back in touch with my creativity but feel too cluttered.

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

Still doing my Smoothies.  Cheating a bit on good eating but getting back into it.  When I eat well, I feel well.  When I am blue it just falls apart.

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

The gym has become my new happy place.  However due to blistering in my two day three company interview marathon, I am hurt and can’t wear shoes.  I lost the gym for over 10 days.  I went two days and reinjured my foot.  I am weaker.  It’s a vicious cycle.

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

I am grateful that I am still hobbling along.  I am grateful that despite not working the mortgage is paid and we can eat.  My stepsons came through for me in an awesome way with the blisters.  I am told and shown, I am loved.

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

No mission statement as usual.  I’ll co opt what I tell my little “elves”- spread joy, do good.

Conventional medicine  Still just Ampyra and Baclufen. I am looking forward to Opera in the fall.  I have just been told about Colostrum and am thinking about giving it a whirl.

Symptoms – Ah, the Raynaoud’s.  The doctor was quackery so I am just coping on my own. Getting weaker in my hands.  My balance may be getting minimally better.

What symptoms are most troublesome  – Independence and mobility.  Hands not working

Do I blame myself for things – Yes, I am still believing it’s food, stress and exercise.

How is stress level?  Very bad.  I think I have reached my limit.  Not working is impacting me on all levels.  I have an enormous amount of anger which I don’t like.

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

Think I am going to get a “tune up” with a therapist.  Amp up the physical therapy, exercise and right eating.

Red Shoes, Blisters, Mom

Posted on by tresswann

I am fascinated by shoes, especially since I have mobility issues and can’t  wear what I want.  Now I do have my fashion fetishes  though shoes are not one.  That was my mother’s.  She thought of herself as an Imelda Marcos of shoes.  Couldn’t walk past a shoe department.  If I had anything, it was probably the irresistible lure of flip flops.  Still, certain shoes have marked certain times in my life.

I hate now that I have to wear flat, primarily oxford shoes.  My goal is not to look orthopedic or old.  This winter I bought a nice pair of metallic  slip ons at Clark’s.  Normally, this might be a Sunday afternoon jeans kind of shoe but it’s my alternative to my shiny black male bankers shoes.  It’s been comfortable in the winter.

Another factoid about me.  I like to go shoeless and barefoot.  Years ago, I worked for a man who said, “Sweetie, I pay you enough to wear shoes.”  I was known for being in meetings and taking them off.  I used to have really tough feet too due to going barefoot all the time.  The one place I really perspire is through my feet.  So, I never wear hose with shoes, if I wear shoes when it’s warm.  Things have changed and I cannot leave the house without the spectral leg and hence the ugly shoes.

I had interviews with three companies over two days in NYC this week.  In the past, these would have been in great locations and all walkable.  And it was in the 80’s.  Technically, according to my doctor, I am not supposed to be in NYC in that kind of heat.  On Monday, I had to walk 2 blocks and a bit to my 2nd interview.  Caught a cab back to Penn but walked a little further than normal.  I had the beginnings of a blister, the Clarks with no hose.

The other thing that has been happening with this new spectral leg is that the bottom of my foot burns.  It feels as if it’s on fire.  I can’t take the shoes off by myself.  Well, actually I can take them off, just can’t put them back on.  This adds to the irritation as I try and wiggle them around.

Back for the second round on Tuesday.  I don’t want to look too formal but because it’s an interview I can’t wear the gladiator sandals that work with the spectral leg.  Back into the Clarks with bandages.  By the time I get off the train I realize this is not working.  Ever resourceful, I try to shove lidocaine cream and tissues into the shoe.  I have long nails so this isn’t primo either.

The interview is on Broadway, literally a block and a bit from Penn.  However, I don’t want to arrive staggering.  Due to blister I miss the bus and have to stand out in the hot sun for 8 (I counted) minutes.  So, when I take the bus one stop and have to cross the street, it’s not going well.  I then interview with two different people on two different floors. What do I do in the waiting room?  I lust after the other people’s shoes. I see someone with red -soled Louboutin’s.   A beautiful  flat  strippy  sandal.

There is no bus the other way and it takes me almost 40 minutes to walk the block back.  A businessman on 32nd Street asked me if I needed help and when I said “no, one step at a time”, he told me I was still pretty.  Being vain, that brought a smile to my face.  However, by the time I started to cross 7th avenue, I needed help.  An homeless veteran helped me the last few feet and one of the sightseeing bus hawkers helped me to the escalator.  I missed my train but continued to stagger through Penn.  Walk ten steps, rest 30 seconds.  I made it to the wall of the police substation.  They noticed and an officer let me sit on the bench inside.  It helped enormously.  Staggered to the train and then down the two flights of concrete stairs to the car.  I did not cry.  Just kept powering through.  Tom nearly cried when I got in the door and took off my shoe.  He wouldn’t even let me get off the chair for an hour.

My foot is a swollen, infected mess.  I did well on the interviews despite that.

This brings me to a memory.  I lived almost two miles from high school and I hated it.  I did  frequently what I am known to do.  I walk away.  Well, now I really can’t but voting with my feet is the way I have handled my life.  So, I used to literally just walk out of school.  Sometimes, I’d go back.  I was also brought up to be my own person and not go with the crowd.  But high school is still high school.  I bought a pair of red suede baby huey shoes for $3 at Thom McCann.  This was huge.  My allowance at the time might have been $1 a week.  I am also my grandmother’s child.  She was a precursor of the “It’s better to look good than to feel good” school of thinking.  So, I wore my hard as rock red suede shoes with a fine wale lavender corduroy pant and lavender Missoniesque body suit to school.  Decided I didn’t want to be there and left.  Halfway home I felt hurt.  Pre-cellphone plus I was cutting school.  Arrived home and my gran and dad were horrified (Ma was at work).  The hems of my lavender pants were red and matched my shoes.  Not only had I burst blisters but had gone almost to the bone..  I literally couldn’t go to school for three days.

Which brings me to me and Ma.  She always told me she had a high tolerance for pain.  She said childbirth  was vastly overrated.  She used to have her teeth drilled without Novocain.   And the implication always was that I couldn’t.  Yet, look what I have done even going back that far.  I just sucked it up and kept on going.  I do deal with pain and uncertainty.  I need to acknowledge I am brave.  I keep on going and ignore the inconvenient.

On the down side, I was practically in tears going to Penn this week.  I used to walk to midtown in a third of the time it took me to walk one block.  I HATED looking and acting like the fragile elderly.  I REFUSE!

Sliding on a Sunday Morning and Reflecting

Posted on by tresswann

t’s a slightly dreary Sunday, rainy.  We usually sleep till  around 7:30 a.am.  Tom got up at 6 to go to the bathroom, triggering the same in me.  I tried to getup but couldn’t sit up.  I need to pull myself sometimes with sheets.  I asked Tom to give me a push up.  No problem.  Then when  I tried to get out of bed instead of standing, I slid gracefully to the floor.  This is usually not a problem.  I  stand up like a toddler.  I grabbed the edge of the bed.  Not happening.  Tom wanted to help.  Sometimes, when I need to get out of the tub at night, he has to come in and help me bend my right leg so I can stand up.  “I need you to do the same thing as you do in the bath.”  He comes over, pulls my leg up and as soon as I try to pull the other one, the right collapses down.  We do it again and this time it jumps uncontrollably and collapses again.  One more time and the leg is jumping up and down even worse.  The first time this happened was in my neurologist office.  I swore at the time it was something he had done to me.  It happens periodically when I get dressed in the morning.  I usually just put my hand on it and stop it.  Tom says, “Isn’t this why you take the Baclufen?”  No, that’s for the spastic thing I do where my body tenses up and I walk like a Zombie.  It’s been happening more the last few days.  Nerves, I thought.  So, Tom pulls my right leg up again and it’s out of control and he has to press it to stop it.  Think of a tuning fork.

He has to walk me to the bathroom.  It’s only 10 -12 feet.  My issue becomes that sometimes in the morning I have problems getting up in the bathroom.  I don’t want another set of grab bars.  It’s insidious defeat.  Every once in a while which is mortifying I have to ask Tom for help.  This morning we anticipate the worst.

Now, I have to call out to my fellow blogger BBH with MS ’cause she discusses bathroom issues frankly.  Let me describe my situation this way: It’s like I can turn on the faucet and most times I can turn it off but sometimes I can’t tell if the tank is empty.  It pours out of me, that I feel, and then it just keeps on dribbling and dribbling.  Mind you when this started this morning, I was in a cozy sleep.  We had just changed the sheets to the high thread count Egyptian cotton.  It’s like sleeping in a lovely cocoon.  Well, that’s done. Luckily, I can stand up by myself in the bathroom.   Tom helps me get back into bed.  My right leg feels totally numb.  And this is the moment he decides to be amorous!  Are all men adolescent boys?  The only thing I want is to get feeling back in my leg and salvage some sleep.

Which brings me to reflection which may have brought on this whole spell.   Yesterday, I opened Facebook and it let me know I had a memory.  Did we remember before Facebook?  I had posted a picture of Jeremy’s college graduation picture with us five years ago.

DSCF0257

So, a couple of things:  I am relatively tiny in this picture.  I always think of myself as tall and huge.  The next thing that hit me is that this was on a grass field.  We returned early from our vacation to attend.  I had walked on the beach and felt normal.  It was a glorious moment.  Yes, it took me a bit longer to reach our seats on the grass at the graduation but I was walking without a cane and without the spectral leg.  Again, the deterioration has been insidious.  I am told I really haven’t deteriorated.  REALLY?  Ok, so I am grateful that I still can get around but this is so far from alright.  It is not alright!!!   Back to fighting and clawing back, one step at a time.

May 2016 Check In

Posted on by tresswann

How did I feel this past Month?

On the blue side, with ups and downs.  The job thing is destroying me.  I get interest and interviews and then I crash.  April marked 6 months out of work.  It is now going to get even harder.  Yes, I am a mature woman with a gimp, a very stylish walking stick and not cheap.  On the upside, I connected with Meg’s blog http://www.bbhwithms.com/

Her blog is a must read and has given me so much hope.  It’s great to know there’s someone else out there.

I am reflecting on how I got onto the wrong track or the track I didn’t want to end up on in my life.  I walked away and now I can’t walk.  Something to ponder.  So, how much of my job situation is attributable to me.  Some, I think.  I became just a tad complacent.  I am looking back in order to move forward.  I feel time catching up with me.  It’s finite.

What did you do for yourself this month?

Still playing arts and crafts.  I did take a finger knitting class.  The only other attendee was a great grandmother who bent over and accidentally mooned the whole store.  I am reading more which gives me joy and peace.

I also have started playing with more smoothies and a reset detox.

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

Well, a definite emphasis on smoothies.  I expanded my repertoire.  I also did a Simple Green Smoothies Thrive  reset hoping to get me back on track.  I definitely deflated.  I couldn’t eat all the food as I was too full.  I paid no attention to the different autoimmune diets but it covered the bases – no sugar, no gluten, no caffeine, no dairy, no meat.  I could definitely eat this way.

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

No Zumba but more gym time.  And I have the new Fitbit Alta which is helping me with my steps.

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

I am so grateful for my friends who keep my head above water.  Every night I list gratitude for at least these five things:  friends, mobility, possibilities, wherewithal, creativity

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

Getting closer to that mission statement,  My grandma told me (it was Shakespeare but who knew?) To thine ownself be true.  Tis like the night, cannot be changed.  That works for me

Conventional medicine  Still just Ampyra and Baclufen.  And my doctor says there is a drug that will be available in the fall that will work for me.

Symptoms – Hands are still  getting weaker.  My hands and feet are multi-colored.  I have an appointment next week.  My neurologist looked at my hands and said Raynaud’s.

What symptoms are most troublesome  – Independence and mobility.  Hands not working

Do I blame myself for things – Yes, I am still believing it’s food, stress and exercise.

How is stress level?  It’s amping up with no work in sight.  Summer is coming.  Ouch.

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

Never give up! Never!  Defy convention.  My mother always said I conformed to non-conformity, so be it.

Why I Didn’t Go to the Gym Yesterday

Posted on by tresswann

I had every intention of going to the gym yesterday.  I am encouraged that my doctor found that I am a little bit stronger and a little bit faster.  I need to leverage that.  And since I am not employed, I have been losing ground.  Yes, it’s nice not to have to struggle through Grand Central, Times Square and Penn Station on a daily basis.  But easily having 7500 – 10,000 plus steps a day is a benefit to someone like me.

My Jawbone Up tracker has not been working so I have been unable to get a real reading on what I have been doing.  I splurged on a Fitbit Alta.  I am eager to see how that goes.

Also, last week I started adding in the stationery bike on my doctor’s advice.

I like to go around 2 o’clock.  It’s all the old people.  It’s fairly empty and relatively quiet.

As I may have mentioned, we have been having issues with the used car lot that sprung up next to my house and the town.  We have been at odds for three years. The car lot does thing illegally and then the town makes it alright.  In recent weeks they cut down a beautiful old oak tree on the edge of our property on Easter Saturday claiming alternately that it was diseased NOT or that the town required it – not according to the last official meeting.  The last time we called the town, the owner was literally pounding on our door within 20 minutes.  The lot’s MO is to start work on a weekend when Town Hall is closed.  Last weekend they started the fence.  We are supposed to have an 8 foot PVC fence.  Sunday morning someone came up and pounded on the door. Again, we will not open our door.  Most of the fence posts were removed.  Tom goes out yesterday morning to take pictures.  We want a dated history of what goes on.  There’s a guy we believe to be the manager over there.  He comes charging over and tells Tom he can’t take pictures.  I hear the yelling and screaming and come out with phone and start taping.  End of story.    Tom is very upset over the threats.  It’s two old fat guys hurling insults at each other.

Tom always helps me from the house to the car and makes sure I get off OK.  I start to drive off and car lot guy comes into the road and blocks me AGAIN!   He wants to talk about the morning’s “disagreement”  and how he wants to make me happy.  I pull out phone and start voice and video as I have expressed to town everything must now be in writing.  We are talking about a Town Hall that is literally across the street from massage parlors!  Tom sees Rob at the car and thinks I am being threatened.  Ah, male testosterone.  I may be older and have mobility issues but I can mostly take care of myself.  Situation devolves.  I must say Tom is being surprisingly cool.  No mistakes, it’s loud.  Rob snaps and I have him on tape saying let’s go of camera and have this out.  And something about beating his f**king face in. Excuse me?  At this point to my surprise, Tom says I am old and sick and not doing this.  Rob starts to yell, and again, I have this on tape, that Tom is a drunk and the only one he beats up is me.  If you have been reading me or know me, you know that we have had problems but he has never, ever beat me.  Seriously?  Has everyone lost their minds?  And how does Rob know any of this?  At the last public meeting, he told the town that Tom shouldn’t be allowed to speak as he was legally not allowed to be in my house. NOT!!  Yes, there had been an order that was quickly rescinded three years ago.

Tom starts to go back in the house and now manager charges over onto my property followed by some other car lot guys and threatening Tom.  I call out “Get off of my property, I am calling 911.”  Which I do.  911  operator has a hard time because of all the screaming going on but they all realize I am on phone with 911 and by end of call, they are back in lot.

Now, I can’t go to gym because I have to wait for police.  And we have had previous situation with someone with drugs and alcohol passed out across my driveway.  Car lot knew him and have hooks with police.  Very nervous at this point.  Tom is not drinking.  There is an order that he can’t but neither of trust the car lot people or the police.  I can’t file the complaint the cop says because I wasn’t the one who was threatened.  I do have a report.  We will see what it says.  After numerous flats in my driveway, I tried to file a report at the precinct because I felt it was connected to the massage parlor that used to be in the lot.  The precinct translated that one into a message store.

Meanwhile, Tom keeps going off about what he’s going to do. Not restful.

So, no gym and my stress level is through the roof which means my legs are shot.

I am going to try again today.  I refuse to be a victim.   Outside eyes may see me as over 50, frail with limited mobility but that is not who I am.

April 2016 Check In

Posted on by tresswann

How did I feel this past Month?

March definitely was a combination of the lion and the lamb.  I am actively looking for work.  I fear that my age and infirmity are preventing me from getting a job.  Yes, I try not to focus on it but it is the elephant in the room.  Sometimes, I say that too.  Then, my Jawbone hasn’t been working so even though I am not walking enough I can’t tell.  I am deteriorating.  No one likes to hear it or see it.  I fell three times.  The last was a week ago and I really hurt my left hand.

What did you do for yourself this month?

Still with the gym and less so Zumba due to the weather.  I can’t really go out in rain or snow, too much chance of falling.  I have started to write again.  I started journaling in January and am writing in the day.  I have continued to clear clutter.  I am trying to reach out to people.  I am reconnecting with the creative  bits of me, a little writing, a little art.  Decoupage again.  Something I started to do in 7th grade.  I was always good at it.  And I am starting to take some glasses.  It’s both an outlet and a way to meet people.

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

More smoothies.  A little off the rails with gluten due to holiday.  And a little more meat.  Getting back on track.

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

More time in the gym.  I am really liking it!

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

Faith helps lots.  My friends are awesome.  Some came into my life, some left.  The ones that are here are my rocks.  My stepsons continue to amaze me with their love and support.

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

A higher purpose is kinda grandiose.  I stand by fighting for what’s right.  Hopefully, others can benefit.  Living with integrity and never ever giving up.

Conventional medicine  Still just Ampyra and Baclufen

Symptoms – Hands are getting weaker and my balance is off.  My fingers are going white and numb which is freaking scary.  My right hand turns purple sometimes.

What symptoms are most troublesome  – Independence and mobility.  I also have been falling more.  Part of it I know is  stress.  But the rest of the time, it’s balance. And the fingers!

Do I blame myself for things – Yes, I am still believing it’s food, stress and exercise.

How is stress level?  Well, I am  still not working. So it’s getting to me.  I am able  to sleep later though.  I’d like to wake between 6 & 7 in the morning.

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

Faith, food, exercise.  Creative work. Never give up!!

March 2016 Check In

Posted on by tresswann

How did I feel this past Month?

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

What did you do for yourself this month?

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

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

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

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

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

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

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

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

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

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

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

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

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

How is stress level?

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

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

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