mobility

Batik and Not Happy

Posted on by tresswann

My late ex-husband was prone to spoonerisms. He used to tell me, he liked “batik” women, meaning petite. Of course, I was not batik. Actually, far from it. I was very unhappy so gained weight. I blew up. I left, went to live with my mother and dropped the weight. Ha! I moved in with someone else, unhappy and became heavier. I left him. I lost some of the weight. Then this condition. I changed the way I ate and became the lowest weight I have been in my adult life.

Being a “fashion is my life’ kind of person, I found out that I actually could be a petite size. By the way, a petite size doesn’t mean you don’t weigh a lot, just that you are 5’4” or less. I could be petite in certain things at 5’5”.

A few years ago, I started to buy petite pants because I could no longer wear heels. The line was wrong and the legs too long.  Then I dropped weight and sizes. Things started to and continue to be baggy. But they also didn’t fit.  Things that had when I was much heavier.  Can you guess?  I am soo vain. I noticed things weren’t quite right.  I seemed a little hunched in the mirror.  I didn’t like it which in part prompted my bone scan.

At 5’5”, I have always been the shortest in my family. My mother was told when I was born that I would be able to model as I was going to be tall, at least 5’9”. I felt cheated. My cousin M, a mere 8.5 months older than me was over 6 feet and wore it well. My mother, originally 5’7” shrunk to about 5’. My recent diagnosis of osteoporosis terrifies me. Yes, more than MC(my condition because it is unique).  Yesterday, I went to a surgical consult for needed surgery on my spine. They measured me. I am only 5’3”. I have unwillingly entered the land of the “batik”.

MC, Osteo and Me

Posted on by tresswann

Well, the results are in.  I have osteoporosis in my right leg, low bone density in my left and osteo in my spine. This along with the spinal arthritis is just too much.  I am terrified.

My mother had intense osteoporosis and osteoarthritis.  It was sudden and unexpected.  My mother was 79.  I called her  every morning when I arrived at work. The week after September 11, 2001, I rang her and she told me she felt a little achy as she had bagged 11 bags of leaves.  It was completely downhill from there.  As I have mentioned, my mother had an extraordinary tolerance for pain – teeth drilled without Novocaine, childbirth no big deal.  My mother cried and screamed with this.  As I’ve also said, she was advanced for her era in terms of fitness and nutrition.  Some of my earliest memories are of my mother exercising.  Once I started to work in NYC along with her, I no longer joined her for tennis after work.    She was down to aerobics three times a week as she said she vacuumed and gardened.  Foodwise:  Leafy green veg, yogurt or cottage cheese for lunch, fresh fruit everyday, lowfat.

Now my gran was short, plump and very erect so I was hoping against hope that this would pass me by.  I started taking calcium and Vitamin D years ago as a pre-emptive measure.  I walked miles and miles until I couldn’t .  Then I went to the gym regularly till my balance was off.  I modified my diet and do green smoothies most days. Lots and lots of leafy green vegetables. I noticed in the bathroom mirror suddenly that I had a hunch.  And my clothes are fitting my legs differently.  And for certain exercises, my legs seemed out of sync, like one was shorter.

Receiving the spinal arthritis and spine deterioration diagnosis has been devastating and now this! Eventually, I took several deep breaths and did a little research.  Yup, this condition can be the result of the other condition. Lack of exercise and weight bearing can be a factor. Oh, yeah.

Another deep breath and I set up an appointment with my PA (I have all kinds of medical people.  An ever increasing team is necessary). I need this because due to technology I can see my numbers but do not wish to diagnose myself. Yes, she confirmed, I do have osteoporosis and there is medication.  We are rather bombarded with that information – the attractive lady actors extolling the virtues of once or twice a year, oh and yeah, the side effects! Therefore, I realize that there are risks associated with them.  My mother was briefly on Fosomax.  Another funny thing about my mother – she hated taking anything. She took Vitamin E and a multi, something for the dementia, if I recall, and the Fosomax.  You should have heard her complain about how many pills she had to take.  If only, she had seen what I take!  She was taken off Fosomax but I do not know why. The PA said I had choices.  Well, the way my mother felt about pills is the way I feel about needles.  I have a real problem with them.    I don’t like prescription meds.  I prefer another way.  For this, there doesn’t seem to be a non-pharmaceutical option. Well, the Ocrevus is enough infusions for me so those options are out.  Injections are out.  So, what does that leave? The PA doesn’t even hesitate – Fosamax.  I ask her about my numbers and what they mean.  She cannot access them.  This is not confidence making.

A tiny bit more research.  I can rebuild some of the bone. I am in search of an endocrinologist.

In the meantime, I am being gentle with me so that I don’t fall and focus on the positive.

The Theory of the Universe, Bugs, Mobility and Me

Posted on by tresswann

I had a friend whose theory of the universe is:  Women have periods.  Men kill bugs.  An equitable distribution of labor.  However, this is not always possible.

I shared a summer beach house with a cheerleading squad and their male entourage.  Full disclosure:  I am not, nor ever have been of the cheerleading species.  We returned from a drunken evening to a seven year locust.  The guys fled the house leaving the squad to deal.  And as women do, someone took a cup, placed it over the bug, slipped a plate underneath and ran to the door and released it into the night air and the guys.  Of course, this was done amongst much screaming.  My role? An interested observer , ready to bolt.

Years ago, I returned to my apartment around 10 at night to be greeted by a cicada.  I called my father.  “What do you expect me to do?”  Uh, fulfill the unspoken contract? Next step,  call the originator of the theory .  Her advice, which I had used before was vacuum it up.  So, amongst much hysterical screams, vacuumed the cicada in the living room and barricaded myself  in the bedroom.  Next day at work, my manager asked why I was looking so peaky.  He told me that vacuums don’t kill bugs.  Now, this was a man who was such a tease, his children tried to smother him one evening.  Could he be right?  Yes.  I came home and it had just about crawled out.  I ran the vacuum for over an hour and smothered that sucker.

During my first, ill fated marriage, I started to grow  out my dark brown hair.  It was at the point where it could barely be put up and it would fall down.  I love to read, especially in the bath.  I was upstairs in the bath with the latest Patricia Cornwell.  Outside  the corner of my  eye, I see something brown. My hair?  NO!!!  Movie spider. SCREAMING!! Jumped out of the tub, dropped the book, grabbed it and levitated out of  the room.  Husband  comes up.  No big deal. NOT!!

So, you see bugs and I don’t agree.

It’s been weird weather, hot and damp.  This has caused an influx of spiders, little ants, crickets.

I am also a clutter person.  I have all sorts of little piles.  My planner with all sorts of papers sticking out is on the floor next to the desk. I also don’t see really well.  It’s that over 40 eye thing.  I amble into my office room and there is a creature sticking out of the planner papers, a big creature.  Something with a body.  I don’t kill things with bodies (see above and theory of the universe).  I cannot clearly see the creature nor can I tell whether it is alive.  Next problem:  Usually when confronted with a situation such as this, I scream or whimper.  Tom is asleep in the next room as it is early morning.  I also scream/whimper when I am falling or losing my balance.  This usually causes him to come running to attempt to catch me.  It’s not pretty as he is a middle-aged man with asthma.  So, I am struggling to suppress my urges and inclinations.  Next, my natural inclination is to run.  Uh, but I can’t.  At this point, I wall and furniture surf, not even walk. Picture me, trying to get out of the room quickly without alarming anyone, i.e. Tom.  And why aren’t those cats earning their keep?

Tom does wake up and dispatches the cricket which had been on its back.

However, something as simple and silly hits me hard.  I have to come up with a new bug strategy. Another side effect of the mobility issue.  I am still holding to the theory of the universe.

Define, Confine, Shopping and the Web

Posted on by tresswann

My father’s two sisters, my aunts,  were obese; one morbidly so.  The elder had diabetes early on and lost her toes.  Aunt E had lost lots of weight but being a member of my father’s family did not believe in exercise, light or fresh air.  She had all this loose flesh under her arms.  As a child, I loved to scrunch it up and play with it. She died when I was a freshman in college. Aunt L, the younger, was morbidly obese.  She was 4’9 or 4’10” and over 300 pounds.  When I was little, she always told me that next year I would be able to sit in her lap.  That never happened. She was straight from top to bottom.  Indeed, she became larger.  As I became older and she became larger, she no longer wanted to see me. I was thin and healthy until college.  My parents never let me think I was as they were terrified I would take after the aunts.  I kept on assuring them that I loved clothing too much for that to happen.  I also liked boys and people.  I had seen what it had done to the aunts. Yes, from time to time, I have used weight as a shield but only a temporary one.  I like being  part of the larger world too much.  I worked in fashion and finance.  This is not to say that overweight people do not work or succeed in these industries but I was and am consumed with my appearance. I also am my very own person and early on had determined that I was not going to live anyone else’s life but my own.

After Aunt E died, Aunt L did lose some weight.  However, following the paternal family inclination, she never ever exercised.  The loss coupled with her height resulted in a medically necessary operation which removed 75 pounds of excess flesh.  After being smug for years that she didn’t have diabetes, it hit with a vengeance.  Her eyesight went.  Aunt L had lots and lots of issues.  This is also around the nascence of the Internet, the change in fax machines and increasing frequency of phone orders.  Aunt L found it possible to stay inside most of the time and order most of what she wanted and needed for home delivery.  My mother often said that with the increasing ubiquity of the internet, Aunt L  would never have had to leave the house.  My mother didn’t live to see Amazon.

I was told when this journey started that diabetes was an autoimmune condition.  Hmmm.  I was quite determined when this journey started that I would not be confined or defined by this condition.  I was adamant.  Well, easier said than done.  The almost 10 years since this has begun to afflict me has seen significant changes.  I obtained the “spectral leg”.  Initially, I only wore it to and from work.  I worked in NYC and commuted through Penn, Times Square and Grand Central Stations daily.  I used to wear it on the outside so it would be a visual clue to people that I might be slower or a bit stumbly.  I still mourn my black leather pants – spectral didn’t work with them.   I still wore  heels at work, just not the 3.5 – 4 inchers that I liked.  Then I started to have to wear spectral all the time.  New shoes were called for.  I wore “crazy” sneakers, lacy oxfords and mary janes.  It was not me but afforded a modicum of style.

I started to use a cane.  Again, as with the spectral leg, initially it was a visual clue.  A fellow commuter used to tease me that he was waiting to see me whack someone with it.  And again, per define  and confine, my canes are seasonal – summer is a pink floral, fall a rich paisley, winter and evening shimmery silver grey.

I started to find it harder and harder to do things other than work.  I hated the perceived pity people had for me.  On the flipside, I hated, hated, hate being inspirational.  I am me and this is it. I was let go from my job.  The world started to become narrower as I wasn’t up and out every day.   I became dependent on the cane, rejected the latest incarnation of the spectral leg currently known as Frankie for Frankenstein.

Then the walker which I haven’t decided will be known as either the gladiator or the chariot became how I need to perambulate outside.  I am considering Washi tape.  And the world shrinks yet again.  Grocery shopping fills me with dread.  The combination of a heavy cart and a poorly graded parking lot sees me relinquishing my list to my husband and sitting in the car.  Recently, at BJs, the greeter has been offering me the motorized cart.  I decline it as Tom and I have visions of my knocking down piles of groceries and children as I speed along ( I do like speed), forgetting or unable to brake. Lately, I am having enormous difficulty getting back into my home via its two little front steps.  It involves swinging my left leg to build momentum and then using the railing to haul myself up.  That’s on a good day.  On a bad day, it’s Tom arranging my legs which stiffen and hauling me up.  Not pretty.

One thing that I have had is the ability and knowledge to sooth myself.  I read.  Reading has always been my drug of choice.  For several years now, I order books and Tom runs in, picks up and drops off at the library.  Did you know there is a version of HIPAA for books?  I had to sign a form so that he can get my books.  I craft and calm down.  However, I haven’t been to Michaels Crafts for months.  I received an offer last week for 40% off online delivery and in-store pickup.  And yes, I could designate him to pick up.  He picked up at the library and then picked up at Michaels.  Easy.  Too easy!  I flashed back to Aunt L.  What happened to not confine and not define?  I have goofed, big time.  I don’t want to hear about you are doing the best you can or you are doing so much better than other people. Not a viable option.  Yes, it limits me.  It can confine me if I succumb.  Other people can decide to define me but that’s on them.  As I made up my mind when I was small, I need to live my own life.  I have to remember this and confront and overcome.

Learning New Words – All this and Arthritis, too?

Posted on by tresswann

I recently went to a new neurologist as I physically could not manage commuting in to NYC (see New Neurologist Visit).  As a result, I had to have a new set of MRIs.  I expected the usual “There’s been no change, blah, blah, blah.”  Last year, my neurologist told me that but mentioned I had spinal arthritis, quite normal at my age.  From the get go, Dr. F had said I might want to consider spinal surgery.  My first thought, years ago, was pure, utter terror.  I had a friend who on Thanksgiving Friday 1998, found a lump on his rib cage. He went to the ER that day and it was determined to be cancerous. Another lump was found on his spine.  It was operated on.  By 9 December, he was paralyzed.  His funeral was Memorial Day weekend.  When Dr. F broached the possibility again in 2017, she said it could possibly help but I would still have MS.  My response to her was that I have been told that I am an ideal candidate for laser eye surgery.  But…there’s always a but.  I would still need to wear readers because of my over 40 year old eyes.  What’s the point?  Would my mobility change?  I voted  no.

Despite my expectations, the new doctor left a message that she wanted to review my test and MRIs.  I had already received a call on the blood indicating that my B12 was a little high.  I’ve had that before.  The nurse also said my cholesterol was a bit high.  This was unusual and mildly alarming.  However, my husband’s was also high.  Aha, we had made three batches of Pati Jinich’s homemade cookies in a week and a half.  When I go off the rails, I do it definitively .  The cookies are made with three and a half sticks of  butter; in other words just about a pound and a tin of condensed milk.  I actually thought Dr. M was calling about my urine test.  I didn’t do it at the lab.  The last time I did one was at my gyn NP’s as we were fairly certain I had a urinary tract infection.  Hilarious is the word that comes to mind.  Not to be too graphic but it was challenging to collect, not fall or spill.  I also have bashful kidney or shy bladder. The lab was not happening.  They gave me a specimen jar.  Next, my husband would have to carry it it in.  My middle initial is P usually for Perfick! But all too often  Procrastinate.  We finally got it together along with a little brown shopping bag for Tom to carry it in.  LOL.  I truly believed and feared that I had something urinary/renal going on.  So, the phone call.  My blood is as previously indicated.  My urine is FINE!  Really? Really. However, Dr. M tells me that I have spinal arthritis.  Yes? But.  I have badly herniated discs.  There has been significant deterioration.  I hear the words “spinal surgery”.  I close down and tell her I have to discuss it with my husband.  This is just graceful politeness.  I always make up my own mind.  I am known for consensus and collaboration but I always, always make up my own mind.

Technology is a wonderful thing or maybe not.  Dr. M has said she will send me the report.  However, there is a patient portal.  I go on it and pull up the actual MRIs.  They are so ugly and so not me.  My philosophy has always been “I am very good at my job.  I know it.  I expect you to be very good at yours.  You don’t know how to do mine and I don’t know how to do yours.”  I used to argue with a friend of mine who wanted all the exact details.  Why?  Can you tell the doctor/hairdresser/dentist, “Wait, that’s not the right way!?” I do open the written report.  I am good at words.  I don’t like these. I pull a Scarlett O’Hara and “I’ll think about it tomorrow.  Or next week.” The report actually makes a kind of sense.  I have been deteriorating almost daily.  No one wants to acknowledge it, including me but there it is.  Spinal deterioration at least provides a rationale.  This, then leads us to spinal surgery.  Tom assures me that things have changed and it’s been almost 20 years since my friend had his.  Laser surgery is now common.  I read the report again.  Basically, it says that there has been no additional demyelination; no increase in plaques. Actually, there has been no increase in plaques since this started. However, I have significant myelomalacia(new word!) and nerve impingement.

I am going to get a surgical opinion.  I am terrified of it but what’s the worst outcome?  I can barely walk now.  My mother developed intense osteoarthritis and osteoporosis seemingly overnight.  So, this diagnosis also makes sense in that light.

It’s always something.  Once again, I find myself being my own care coordinator.

Has anyone else encountered spinal stenosis and had a positive surgical outcome?  Or is this going to be like cataract surgery and because I’ve reached this state of deterioration, anything is an improvement?

Look, Ma. No Pain. Teeth

Posted on by tresswann

My mother had an extremely high tolerance for pain.  She used to have her  teeth drilled without Novocaine.  She also claimed that childbirth pain was vastly overrated.  Period pain and cramps?  In your mind.  She worked with someone who had to take Percocet monthly and Ma just disdained that.

Me?  Cavities- I used to get gas and Novocaine!  Teeth cleaning – numbing agents.  I was so not her.  In fact, when she finally admitted to pain with osteoarthritis and osteoporosis and cried, I was terrified.

My husband also believes that pain is mostly in the mind.

In the last 6 months or so, I have been in pain but due to my upbringing, not really acknowledging it.  Following my mother’s  lead, I have just looked at it as part of my new reality.

I started taking medical marijuana a month ago (more in another  blog).  My impetus was based on hearing people report improved mobility.  Yeah, I mentioned pain but just to justify the prescription.  Guess what?  I found that it numbed or lessened my pain.  My right leg is the one most effected by this condition but my left knee feels like it is a football.  Even with the MMJ, it has been a constant throbbing presence.  I have been unable to concentrate.  It has impacted my ability to do everyday things.  Some days everything just hurts.  I am my mother’s child.  I soldier on.

One of the areas that has been hurting is my teeth.  I have had two huge holes in my teeth.  I chipped a tooth a couple of months ago and it has just rotted away.

Let’s talk about teeth and my condition. Due to losing my job (I didn’t lose it; they let me go), I found myself with  a huge open hole in one of my teeth.  I thought I couldn’t afford to do anything about it as I was trying to keep three households afloat on unemployment, severance and savings.  I am convinced that this was the gateway in for my condition.  I did have a huge infection.

I had my first cavity at 18.  My great-aunt lost her first tooth at 92! As an adult, my teeth continued to deteriorate and I have had root canals, crowns, implants and extractions.  With one of the first extractions, I was given Vicodin.  Amazing!  I was still going to Zumba and did really well.  I taught a class that literally always gave me a headache with no stress.  I told my neurologist.  She laughed and said it was addictive.  I said at my age, “Who cares?”  She gave me Baclofen.  It didn’t hack it.

I went to the dentist a few weeks ago.  I allegedly have dental insurance through ACA.  According to that dentist, most of my mouth needs extractions and  root canals.  Of course, insurance either denied or referred to a subpar clinic.  Once I acknowledge my mouth, I take care of it.  I have learned the hard way that dental is not the place to scrimp.  I headed back to my favorite, expensive oral surgeon. My MMJ supply is also running out and I need to go for a refill. My thinking was that I could make it till next week because I would get Vicodin.  Well, he took out three teeth last night.  Two next to my upper front eyetooth.  No Vicodin!! Just regular ibuprofen.  This surgeon is excellent.  No pain.

Of course, me being me, I went for sedation.  So, last night, no pain, just blood.  And in addition to the Vicodin, I have been looking forward to antibiotics.  I know I have an infection running amok in my body so drugs will kill it.

The brilliant thing is this morning I woke with NO PAIN! NONE!  Not my legs, not my head, not my shoulders, not my teeth.  I am walking more freely. I can almost type the way I used to.   I can actually concentrate!  Bad news is this probably won’t last.  How can I get this effect legally, cheaply and regularly?

Anniversaries and Losses

Posted on by tresswann

July marks several anniversaries for me.

July 3, 2000 found me starting a new job at the omnipotent megalith hereafter known as The Bank.  I have told this story in a blog before.  Whilst I was in orientation with the HR person, I was informed there was no early leave at The Bank.  My initial thought was , “Why are they talking about retirement when this is my first day?”  I found out that since July 4 was a holiday, I could not leave early.  Really?  My manager sent me home at half past two o’clock.  My plan was to stay a year.   I live outside of NYC but NYC is my place to work.  Unfortunately, most people have a bad sense of both geography and commutation.  It takes me less time to get into the City than people who live in the other boroughs.  I needed a year back in to quash the naysayers.  Overall, I was there more or less for 15 years!  My mother used to say, “Do two, maybe three, strive for five.”  My parents were totally anti-corporate which also means no pension, no benefits.  I started.  I hated it.  I tried to get another job immediately.  The Bank had surveillance cameras throughout its offices.  No one knew if they really worked.  I am sure they must have as literally hundreds of millions of cash and checks passed through there daily.  When I first started there people could actually make cash deposits.  I remember seeing a 25 million dollar check being casually processed.  Back to the cameras.  So, every morning I would look up at a camera and carefully enunciate. “I hate working here.”  No luck.  I went on a business trip to California with my manager and his manager.  I am a technical trainer so I was training the staff on how to use technology that did everything a real teller in a bank could.  Due to space limitations, the managers had to be in the room with me.  They loved my approach.  In a last ditch effort, I told the senior manager that most days I felt like a square peg in a round hole.  He told me he felt the same way.  So, instead of becoming my ticket out, it became my ticket in.

2001 arrived and I made ready to move on. September 11 happened.  And here are parts of the reason I never liked The Bank.  NYC on September 11 was an odd place to be .  I was in Midtown but no knew what was really happening. People started leaving.  The Bank’s policy was to never expense employee meals unless travelling.  Even then they had a global policy of $45 daily for everything if you w ere travelling.  By the afternoon, one of the managers said he would buy pizza for everyone still there in our department.  He was admonished and advised he would not be reimbursed.  I ventured back into NYC on the 13th.  I had been due to teach a class on loans.  I felt that needed to be placed on hold as people adjusted to our changing world. I went to the floor where the students sat.  It was just past 9 A.M.  And the first day back in Midtown for many of us.  You could have heard a pin drop as people sat at their desks, heads down, working furiously.  I still refused to teach the class.

I worked in the IT area and was hired specifically for my non-techie self.  Someone there told me I would like “The Big Bang”.  It’s because some of the people were just like that.  Despite all this, I stayed even after my group was let go.  I was brought back as a consultant for another 11 years.  It worked.  I was mostly on my own.  Despite the lack of benefits, I made nice money.  Almost too much money as it were because it was difficult to get something similar.  I worked alternate hours 7:30 – 4:00 or 4:30.  Eventually, I worked  7:30 – 3:30 but I was always available before and after hours.  In fact, due to my West Coast following, I took calls and emails till 9:30 or so. I also worked remotely on Fridays as commuting became dangerous for me.  I also worked remotely in bad or hot weather.  This was the job where my mobility began to give out.  My standard line (feel free to use as you see fit) was, “It’s not contagious. It’s not cancer.  It’s not terminal.  And, there is nothing wrong with my brain.”  For the OMG! OMG What happened to you crowd, I would laugh. “I am just falling apart.”

It all ended badly.  My reasonable accommodation was removed.  I was made a truly insulting offer to become an employee which was totally unacceptable.

I struggled to find work.  I was a woman of a certain age who had been at a company too long and walked with a cane and the spectral leg aka brace.  Hey, my canes were seasonal and pretty.  I finally found another position more than a year later.  Enormous pay cut and more responsibility and work.  So, this represents another July anniversary.  On July 14 last year, Bastille Day, Liberte, Egalite, Fraternite,;  I walked out. I could still do that.  I had the misfortune to work for a mean girl from high school.  I loved the company and the people.  It hurts.  I had more personal interactions there in 5 months than I had in the 15 at the Bank.  People miss me both places.

My feeling, rational or not, is that losing these two positions has severely impacted my health.  And I hate the phrase, “losing a job”.  I know where it is.  It’s not lost.  At the Bank, I walked 10,000 easily and often.  The building was a city block and I walked to Grand Central , walked through Times Square Station and then Penn.  The next job had much less walking but phenomenal people.

So, this week I am marking a year without working.  I have become officially disabled and un officially retired.  This is so not what I wanted or envisioned.  It’s hard.  I miss getting dressed – clothing is my life. I miss people.  I have been demoted to a walker.  It hurts me to look at it.

All losses are relative.  July was bad before the Bank.  If you have read me before, you know I have left a swath of dead boyfriends and other lovers behind me.  Bobby was one of my favorites.  Once, I was asked in therapy, of all the guys I had been involved with, who would I have liked to marry.  Immediate answer – Bobby! Uh, a small problem, bisexual?  Well, he left me for a man. But… But we went to the same school and bore similar scars; we liked to cook and eat out; we loved to shop; we loved Dylan’s Black Diamond Bay; we walked in Washington Square on warm evenings; we loved to go to the movies and theater. Big missed hint and clue:  We saw American Gigolo three times and we had to get tickets to Bent.  He died of AIDS before his 30th birthday which was July 7.  It’s hard to imagine that he’s been gone longer than he was here.  I wasn’t allowed to go to the funeral as his parents blamed me for his death.  He used to tell me if he ever married me, it would kill his parents.

July 7 also marks the day my childhood friend, Julie died.  Again, way young.  She died around 40.  She was real and funny and loyal. You always knew where you stood with her.  She arranged for her father to take the photos for my first wedding because I hate those forced, frozen, fixed photos.   Her husband had diabetes.  She used to tell him, “Chuckles, I am going to dance on your grave when you die ’cause you didn’t take care of yourself.”  Ovarian cancer.

So, to put it in perspective, what’s the big deal with not being able to walk.  How can I possibly measure not working against not living?  Well, it’s my pity party and no one else is invited.  Mourning is mourning. Respect  for all deaths and departures.  And then?  Then there is summer and its warmth.

Acceptance and Nature – The Child is Father of the Man

Posted on by tresswann

A favorite family story revolved around how accepting I am.  I was about three  years old and waiting to cross the street with my mother and her best friend.  A midget came  and stood by us.  My mother and friend waited with baited breath for me to say something.  Instead, I am told I looked the woman up and down, gripped my mother’s hand and crossed the street.

Another favorite family story concerns my mother’s pregnancy with my brother.  He is two years, nine months younger than me.  Almost flippantly and buying for time, they announced there was going to be a new baby and it had been ordered from Macys.  My mother ordered from Macys all the time so, of course, this made perfect sense to a two year old.  I never said a word about her getting fat.

One more favorite and this one speaks deeply to who I am.  When I was about one, my mother inadvertently bent down and was hidden from view.  I am told I looked around, didn’t see her and proceeded to practice walking.  When my father came home from work, they both hid.  Again, I looked around and proceeded to practice.  I actually walked in public for the first time at my one year celebration at my grandfather’s.  Another baby tried to play with one of my new presents.  I stood up in front of all and calmly walked across the room and took it back.

So, what does this say about me? Well, we can’t tell about what I was thinking back then.  What I do know about me now is that when I was working, I tried to make everything look easy.  I had to figure it out myself before I would do it in front of others.  See learning to walk anecdote above.     I also worked with a myriad of proprietary software applications.  Almost always, I worked  around things unless they were totally broken.  See above baby stories.  I also have a wide and diverse circle because of my accepting nature.  I take people as they are, for the most part.

Now onto my disease, condition, whatever you want to call it. When my body started acting differently, I ignored it.   I broke down and visited my husband’s PA because I thought I knew what it was.  It wasn’t.  I then embarked on a doctor journey – neurologist, rheumatologist, endocrinologist. An indecisive spinal tap.  Whilst all this was going on, I did not look up anything on MS.  This was partially due to my not wanting to influence my perception of symptoms as well as flat out denial.

A word about doctors and the medical profession – I was brought up with a healthy disregard for them.  My parents didn’t readily believe everything a doctor told them.  Another story.  My mother’s ob-gyn accused her of eating improperly during her pregnancy with me, particularly salami which she abhorred. She came out of the hospital after having me, weighing less than before she was pregnant with me.  She went to her postpartum visit, told him off and never returned.  As they aged and became more experienced, they trusted even less.  The second part to my disregard of doctors is having been exposed to pre-meds at Johns Hopkins.  At 18, I prayed to never get ill.  So,  I take most things doctors say with a huge grain or grains of salt.  I have never truly embraced my diagnosis.  I refuse to believe there is no hope.  I have tried and continue to work with alternate therapies.  However, this year I came to a realization or several.  I advocated to get a spectral leg and then an improved one.  For the second one, I looked on line for something that would be less obtrusive and allow me to wear better (prettier) shoes.  I did not research what people said.  I did realize after awhile that I was throwing my right leg to the side.  Back to the doctor and for the first time, I was referred to a physical rehab doctor.  I had never known.  This doctor was the first one who actually evaluated my walking and what I really needed.  Result?  Frankenstein!  I went on line and discovered that other people felt like me about these braces.  So I  could discount his statements about wider shoes.  I, also saw, that feeling ugly is valid. It can and does impact my health.  Several years ago, when I was employed and making rather decent money, we found out about the Bioness.  It was around $7000, not covered by insurance.  I asked my neurologist about it.  She told me I probably would have the same result with the spectral leg.  I accepted that.  Now, I have seen research and reports from people on the Bioness and the Walkaide.  Wrong!  It may truly have helped.

When I was first diagnosed, I immediately thought about food. I consulted a nutritionist who made all kinds of claims about a diet that made no sense to me.  I asked my neurologist, who concurred.  I accepted.  It was the Swank diet.  If the nutritionist or the doctor had said so, I would have researched and gone for it big time.

The same thing happened with exercise.  I had started Zumba, which I love.  My doctor approved.  I did water aerobics for awhile.  ( I couldn’t get out of my suit and canes and water are slippery!)  I did get the occasional prescription for physical therapy.  I did have an MS Yoga video. I have just discovered MSWorkout and the MS Gym online along with a myriad of other exercises on Youtube.  Movements I can do that help me.

So, I am fighting my way back  on three fronts: food, exercise and walking assistance. My nature took to the fore over my upbringing.  I have learned a very hard lesson.  And yes, I guess it can be said that these insights into my character is an upside.  I would have preferred not to have had a reason for these.  All I can do is move forward with a new understanding of the effects of my nature – positive and negative.

4th July Independence

Posted on by tresswann

The Fourth Of July was not my mother’s holiday.  She grew up in another country. As with Thanksgiving, she would state, “This is not my holiday.  I did not grow up with it, but I will do it for you children..” So, we would have hot dogs and hamburgers and most importantly apple pie.  She would laugh and say the garden knew it was a holiday as it was red, white and blue -hydrangea, roses and daisies.  We’d sit out in the backyard to catch glimpses of the fireworks from the park.  It meant ice cream.  Sometimes, sparklers.  Illegal, illicit glittery sparklers with the other neighborhood children.

As time marched towards adulthood, it became a day to sleep late and not work, followed by the requisite barbecue and pie.

The summer I graduated college I was looking for work.  I went to my local neighborhood dive.  Most of the people there were people I’d been at school with.  I was an introverted nerd who had blossomed in my time away.  I was shocked when a football team jock invited me to spend the 4th with him in Montauk, at another classmate’s house party.  I told him I had to ask my father.  Said father was furious, not that I wanted to away for the holiday with a boy; but rather that I had said I had to ask.  So off we went.  I remember getting  there early in the day.  Just about everyone was from high school and the cool kids no less.  Despite my blossoming, I felt as if I was in a foreign land.  We all grew up drinking.  It was the era.  But these people had started way too early in the day for me.  When it was dark, H the host, suggested that T and I join him and his girlfriend and sleep on his boat.  I don’t do boats.  My grandfather was a ship’s pilot and drowned.  Yes, this was over 50 years later but I had and have an innate antipathy towards boats.  Evening falls and finds us in bed.  Hey, red blooded American twenty somethings! So, lying on my back and thinking of England and see fireworks.  Yes, they’re exploding in the harbor or wherever the hell we are.  I say, “I am seeing fireworks.”  Poor thing took it seriously.  The romance was short-lived.  It was the Son of Sam Summer and that coupled with his fear of spiders cooled things down quickly. The other takeaway was that my high school and forever boyfriend was in California at the time.  Some years later, he returned to NY.  The first phrase out of his mouth was, “What’s this I hear about you sleeping with H on his boat?”  Uh, wrong guy and it’s a truly tiny country.

Next decade(30’s):

“Paris was a place you hide away if you felt you didn’t fit in.”  from  “Every Picture Tells a Story”

I found myself in Paris for July 4 for pret a porter and my job.  I knew I’d get a comp day.  Imagine being paid to do this?  I love Paris and it was not my first trip.  I went all over the city.  My employers had a “rule” that I couldn’t come home without a roll of film.  It was unusually  cold and I wasn’t prepared.  On the Metro, a gentleman thought I was homeless.  One thing, whenever I travel, I note what makes me an American.  If I hear the Star Spangled Banner, it gets to me.  “land of the free; and the home of the brave”

Next decade – the Millennium

I find myself on July 3 starting at a monolith which I call the Bank, in all its omnipotence.  The HR orientation woman tells me, “There is no early leave at the Bank.”  I look at her quizzically as why are they discussing retirement when this is my first day?  She explains that early leave means for the 4th.  This is good because I am already planning my own early leave of staying just a year.  So much for plans.  I end up staying for 15 years through a new marriage, the death of both my parents and the onset of my lack of mobility.  Yesterday was the 18th anniversary.  So much of me was tied up there and still is.

Next decade (40’s)

I am at the Bank.  I have been seeing the man I will marry for about 9 months.  He has a room in a house full of guys.  The owner is a friend of my brother’s.  He has AIDS, which he denies; smokes copious amounts of weed and drinks heavily.  He  is one of the sweetest guys I have ever met.  We barbecue in the backyard.  And of course, we drink.  Everyone laughs as I discover I have drank a whole bottle of rum.  They laugh again as I try to get up the stairs into the house in my dizzy flipflops.  Tom and I sit on the lawn and watch neighborhood fireworks.  I am happy

Same decade(50’s):

We move.  We laugh as our house is close to the police precinct and the display of fireworks emanating from that direction is spectacular.  We sit on the step and move back and forth between the front and the back.  The noise continues till morning.  My reflection is that we are lucky to live in a country where the explosions and the lights are not bombs

Present Day –

It’s hot and steamy.  Normally, this my weather.  Instead, the heat has made me captive in home and body.  The fans spin and the A/C is on.  I look out windows and at security cameras instead of being outside, half dozing, reading in the afternoon heat.  No barbecue, no apple pie, no fireworks of any  kind.  I have been told that currently I am grieving the Bank or more precisely my work there and my life.  A couple of things -it may be illogical but I see not being at the Bank, the beginning of my current decline.  I became complacent.  I didn’t learn enough new things.  Most importantly, I didn’t make a plan.  Even if I had, there was no plan to lose mobility.  Today, for now, I am dependent rather than independent.  However, I still have my mind! So, land of the free, home of the brave.

 

Vice Presidential Aspirations and Disability

Posted on by tresswann

What did you want to be when you grew up? I was about ten and I sent away for career brochures.  I think it was from an insurance company.  I thought lawyer looked interesting and different.  Girls just didn’t become lawyers then.  I also really, really wanted to become an actress.  Also, write books.  My father was a writer so it’s in my DNA.  And I probably couldn’t do it because my father was a writer.  He did tell me before he died that I should write and not let him stop me. It was a gift from him to me.

As I grew, practicality intruded.  I have a facility for language.  I decided to be a multi-lingual secretary.  My mother was a secretary.  She was excellent, well-paid and powerful at times.  I was told in high school that I wasn’t fluent enough;  native speakers would receive precedence; I was that smart that I should have my own security. Reality?  After Hopkins, I applied for a secretarial spot that wanted someone who spoke English, French, Spanish and German, and who studied Latin America and Africa in that order. All checks.  I didn’t get the job because my typing wasn’t fast enough.

Moving on, again with the practicality. OK, if I couldn’t be a multi-lingual secretary, I would major in International Relations at Johns Hopkins and become Henry Kissinger.  Well, that didn’t work.  Economics and I were a nonstarter.  I did attend a job placement interview at Hopkins.  When asked for my aspirations, I said I wanted to wear Vogue clothes.  The counselor was mildly taken aback but assured me with a Hopkins degree I could do anything.  NOT!!  See above for starters.

Attempting to be logical, I determined if I wanted Vogue clothes, I needed to work in clothing.  I had thought  about this in high school but fashion was a trade and I was supposed to be too smart.  And I didn’t draw.  Uh, all work in fashion is not design.  Hopkins?  So, not working.  I was on my second job as assistant office manager in a major construction company when the receptionist turned me on to FIT Continuing Ed.  I was off and running.  Sundays 9- 5 and two nights a week till 9:30 or 10:30.  And I received an A in my art class.  My new ambition?  I was gonna be Calvin Klein.  In later years, I was questioned as to why I always wanted to be men.  Duh, that’s where the power was and is.

I started out as an assistant at Bobbie Brooks.  Why I got the job?  I was the only candidate with personal stationery; I am a Libra and they thought because of Hopkins, I knew psychology.  I decided I wanted to be a merchandiser in my own right.  Five companies later, I did it!  So, then what?  I wanted that VP title but I was just a “girl”.  This “girl” negotiated a licensing agreement with a major French fashion company.  Girls didn’t get to be vice presidents in that company.  The fashion press referred to me as vice president merchandising but not the company. Yes, they  merged with another company and gave my job to a male VP.  I definitely was able to buy and wear Vogue clothes so I did fulfill that ambition.

Back to the drawing board and I started working in financial services from the bottom up.  I had a facility for it.  Who knew that a fashionista could be successful in banking?!  Complications.  I was up for an AVP but was let go.  I came back as a consultant for another 11 years.  Same story – perceived as VP but no title.  I wanted to end my career as a VP.

Unemployed again, over 50, mobility issues, not happening.  In the last three years I have applied and applied.  I  began to realize that I could no longer commute into Manhattan.  If you want to be a VP and a woman on Long Island, you have no life.  I tried anyway.  I was told three years ago to apply for disability.  Me?  I am not disabled.  I just don’t walk well.  I am no longer the woman who wore three inch heels ,carried pocketbook, laptop and projector but disabled?

I finally succumbed last November and applied.  It’s like when I obtained the handicap sticker 5 years ago.  It was a “just in case”.  I thought it was temporary and I would be me in 5 years.  I am worse.  Cane, walker. Everyone said if anyone deserved it, it was me.  I have fought so hard.  I only did it because of economics.  This is a title I do not want.

Last Thursday, I received a letter saying I was medically qualified but the non-medical was still being evaluated.  This makes no sense.  Friday, there is a check in the mail.  I am officially disabled.  It is bittersweet.  The wolf at the door is being held back.  This is not a title I ever aspired to or even wildly imagined. WTF happened!! This was not what I wanted to be when I grew up.  I am coming to terms with the fact that my career life is over.  I am NEVER going to get that title, again, something outside the sphere of possibilities.

It’s reinvention time, Tresswann rising.    What do I want next?  What am I going to do for the rest of my life?  Well, the great Carib-American novel is possible but probably not publishable. I need to walk.  This gives me the opportunity to focus on getting back to walking.  I feel a little lost but I shall regroup.  I did originally want to write so maybe…

What did you want to be when you grew up and what happened along the way?