shoes

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.

Masquerades, Zumba, Mobility

Posted on by tresswann

I have been invited to a Masquerade Black and White Party in honor of my Zumba instructor, Wanda.  I actually had not opened the initial invitation as her birthday is in early April.  Not only did this conflict with my infusion but also I have found it impossible to cross the street where classes are held. This is Saturday and at a hall.  I wrote a Yes, then a No, then Yes; finally sending a No but getting ultimately  overruled.

I started with Zumba and Wanda  years ago.  I had a friend who wanted to take a free Zumba class at the library.  I am thinking 2009 because I already had been diagnosed.  I really went along to humor my friend.  It was held downstairs at the library and I arrived early to describe my problem to the instructor.  No problem at all, she exclaimed.  Do what I wanted and what I could and she’d watch out for me.  I took my shoes off because when I dance that’s what I do.  I had a blast.  When she announced Pata Pata; I was sold.  My healthy friend, by the way, stepped out into the hall halfway through the class, winded.  I just had to rest at the top of the stairs before I put  my flip flops back on.  I couldn’t sign up that Fall when Wanda started offering classes through the Town but I was there in the spring and never stopped till 2 years ago. I am of Caribbean descent and the music played in class is the rhythm of my youth.  They play Belafonte.  In fact, when class initially started, there were quite a few West Indians.

I used to dance at the front of the class without the spectral leg and I’d do the hour or most of it, most days.  And in the winter, the winter when it was frigid, we’d prop the doors wide open and let the cold in, and turn on the fans.  It was always a packed class, 45 people.  The Town thought we were doing so well they put in a mirrored wall which discombobulated us because that’s not how we danced.  We danced facing the middle.  Class was originally supposed to be two nights a week but when Wanda could, she’d offer more.  One spring, I was going four nights a week.   I swear I queered a job interview in another state because I just could not imagine not going to Wanda’s class.

In the summers, Wanda took a break.  We lost our Town space because it was in the pool building.  And after all, it was vacation time.  Wanda would find a place for a class or two.  One year, it was at a beach club.  My condition was beginning to take a stronger grip on me.  I found the shore breezes were buffeting me and I could not continue.  I had always considered myself sturdy before t his.

Returning to the full group in the fall was always joyful.  This class is how I envision the world.  There are all sizes ,ages,  colors and yes, even men.  Deaf mutes; they feel the beat.  It’s a real community.  They have been supportive of me as much as I would let them.  Originally, some thought I was the woman with a stroke.  They have watched my downward slide without comment, which I appreciate.

Which brings us to the masquerade party Saturday evening;  I will be attending solo with the protective shield aka rollator.  I will NOT be wearing Frankie but one of the other spectral legs.  Wanda reached out to me to come.  She said, “You’re one of those who definitely had an impact in my life.”  I HATE, HATE that kind of thing with this.  Once when I couldn’t do what I wanted to, I went outside followed by Wanda’s mother.   I was near tears in fear, frustration and rage.  She told me I was an inspiration to the group,  I was absolutely horrified.  I refuse to have my life considered inspirational.  Here’s the thing, we all have to live the lives we have.  In my case, I have tried ( at least in my mind) to continue to do what I’ve done.  It’s a choice.   I could have decided to throw in the towel.  Either choice is valid.  My choice is my quixotic idea to continue.  Not inspirational.  Inspirational is the man with one hand playing pro ball.

So,  Saturday evening, I will see  women I haven’t seen in a few years.  I dread the “OMG, what happened to you?”  I stopped going to Zumba after a summer’s break.  It had reached the point where I could only manage 1 of the two weekly sessions when I was working.  The class had moved to a larger space.  The downside was parking was across the street.  I started to need help.  Initially, not so much going but coming out and crossing slowly across 4 dimly lit lanes of traffic.  Also, I don’t like to identify as a victim so after dark, help was needed.  It was insidious.  I started to need company to cross.  I had had the security of the wall for some years but now I needed a chair and less endurance.  Then I lost my job and with it not only my income but my walking.  Even going to the gym was not enough.  Here I am in the rollator.

Normally attending a Black and White Masquerade party I would have been levitating. As it was, I was, Yes!  Tom was excited as we both know, I need more physical friends on the ground. And then, and then.  Him: “what if there are stairs?” Me, “What am I going to wear?”  All of this followed by   the reality – could I drive?, could I move? Could I do it on my own?  And me with the pounding thought – what am I going to WEAR??

I love my clothes.  It’s how I view me.  I create the persona.  It’s an expression of my creativity.

I have been to  Black and White parties as well as Masquerades.  I had a magical evening  at Tavern of the Green.  Another time a boyfriend told me it was Black and White casual. DUH NO!  And my husband, totally, unfamiliar thinks it is a race thing! I have tons of all black clothes and black and white clothes.  The problem is my shoes.  All of the above are impossible with Frankie and the clodhopper sneakers.  Last year, I wore a long, black chiffon skirt with pewter, perforated oxfords! UGLY!   It hurt my soul.  My feet burn, despite larger shoes, blah,  blah. I know this is going to drive me Wild.

Masquerades make me nostalgic.  I always have masks.  One wall in my bedroom was masks.  Now, I can find only one.  Drat, there definitely was one with white feathers.  One of  my ex’s daughter had an Halloween wedding, masks required.  The wedding  party was black and white.  The bridezilla was upset that the priest wouldn’t allow her to wear her vampire teeth and the groom left the tiara home.  In addition, the place cards were also masks.  The uncle was given a devil mask.  He heckled the best man’s toast.  One of the guests exclaimed, “It’s just like “Eyes Wide Shut”

I know I have to go.  I cannot ignore  the graciousness of the invitation.  Nor can I not take the chance to miss my community.  I fear it.  I don’t want to deal with the OMG’s, the ugly, hurting shoes.  I won’t be able to dance with  women I used to dance with.  I shall be dependent which I HATE because someone will have to walk me to my car after dinner. And I am worried as I have a tea in the afternoon.  My energy will already be tapped into.  I feel like me when I am seated so it will be challenging to even sit through dinner.  I’ll focus on the accomplishment of being there, fighting back, starting to rise again.

A Third Spectral Leg and Other Woes

Posted on by tresswann

I hate the idea of a brace, appliance, AFO or whatever you want to call it.  So, I have always called it the Spectral Leg.

I had my first one fitted after a visit to an orthopedist.    SeeDoctor Visit, the Spectral Leg and the Motivation of Ugly

So, I finally made the appointment to be fitted with the new ugly.

I commuted for years into NYC and took the same trains.  You recognize the people after awhile.  Around the time, a couple years back when I knew I was going to lose my job, a man came up to me on the train platform and said he had been looking for me.  “You’re the woman with foot drip, right?”  He told me he used something called a WalkAid that I could be fitted for not far from my home.  We looked it up and it appeared to be similar to the Bioness which we had “discovered” a year or so before. When I had asked my doctor about it, she had told me my existing brace was working and it would do pretty much the same.

Well, the place I had to go for my fitting was the same place for the WalkAid.  We were determined to inquire about it.

My second one has always hurt me.  It has caused my foot to burn and I actually get blood blisters on the ball of my foot from it.  Originally I was told it was in my mind or a nerve thing.  Most recently, I was told that my nerves made it worse.  The last doctor didn’t address it at all as he was replacing it.

The fitter asked about what the doctor wanted as he usually writes something more detailed than was provided.  He also asked who had prescribed my current one and how.  My neurologist wrote it as I wanted something less obtrusive and one that would give me better shoe selection.

He looked at it and the way I walked.  By the way, I made my fifth public appearance with a walker.  The brace has hurt me, not only in terms of the physical pain but also because of its design.  It has hurt my walking.  The first one extended to just before the ball of my foot; this one to my entire foot.  Apparently, this has not allowed my foot to work properly which is why I find myself walking so peculiarly.  My knee and hip are more messed up.

Options?  Well, the to the hip one that the doctor knew I wouldn’t wear and thought might be too heavy for me. One that’s like the first but halfway up the ball of my foot – limited shoes and it won’t help the knee problem.   And then a massive ugly one, front, back and sides.  Oh, I do have a choice of white or black and I can have purple butterflies.  I am a woman of a certain age so purple is regal but butterflies!

And while we waited, we read the WalkAid brochure.  Any shoe!  Walk barefoot on the beach.  The beach is my sanity and peace and it’s been denied to me for years!  Plus because it sends electric impulses through the nerves, it could refire them.  The fitter says I can have it but it won’t help my knee and the way I walk now.  I feel like weeping in frustration and anger.  It’s a little bit me, a little bit them.

So for now, my plan is to get and wear ugly and fight.  And TRUST MY INSTINCTS.

My instincts say wearing it all the time creates dependency and weakness.

How does anyone navigate this mess?  And this fitter doesn’t believe I can improve.  Maybe I am a fool but I don’t buy that.  My plan is to really max healing my knee and getting the WalkAid.  Beach here I come.  Maybe I am delusional but that’s me.

Doctor Visit, the Spectral Leg and the Motivation of Ugly

Posted on by tresswann

Another doctor’s visit – this one for rehabilitation.  Here’s a funny to start. Tom’s dad had to go into physical rehab a few years ago in FL and when he rang to check on him,  they connected him with drug and alcohol rehab. So, mine is for physical evaluation.  We were waffling about going as it was close to rush hour in NYC bound traffic and over 30 miles from the house.

One of the challenges confronting dealing with this condition is that the onus is on the patient to discover and coordinate care and options.

Initially, my neurologist never suggested a brace.  I kept on falling.  However, I am used to falling and as a rule do what I have been told are very graceful ones.  Sometimes, I just crumple.  I was going through a stage where I was falling a lot and heavily on my knees. Our solution:  Harbor Freight for kneepads.  Uh, ugly and unwieldly so a friend referred me to an orthopedist she had seen for carpal tunnel.  My knees hurt and I thought I had done damage.  He wrote a scrip for the first brace.  It was filled by a little old man with hair plugs.  He told me I was lucky as I would soon have them on both my arms and legs.  When I went for the fitting, I swore he used a hair dryer to mold it to my leg.  I threw it in the trunk of the car and basically didn’t use it for about a year.  It was white plastic and covered my calf.  I used to crack up my physical therapist by saying it was a great shoe horn and helped me lift my leg into and out of the car.  I mainly used it as a visual cue and for some support walking and climbing stairs in Grand Central, Time Square and Penn Station.  I didn’t wear it in the office but had nice flats and kitten heels.  The spectral leg, as I prefer to call it, could only be worn with lace up shoes.  I am known for not wearing sneakers.  I was brought up to believe that they are acceptable for the gym, only.  I was never one of those women you would see walking in Manhattan in a suit and sneakers.

When things finally deteriorated and I started wearing the spectral leg  full time, the ugly tie shoes weren’t happening.  I spoke to the neurologist who gave me a scrip for a new one.  This one was to go completely under my foot and be less obtrusive than the original.  It would let me  wear different shoes, too.  My neurologist has always understood that looking good is important in helping me feel good.

The new spectral leg did not have shoe horn capabilities.  I can’t usually put it on myself.  As is my usual habit, I really didn’t use it for months.  Big problem when I did, sometimes, after just an hour my foot started to burn.  Other times, I could go for a few hours.  The pain was incredible.  Very problematic when I had to drive as my nerves would then cause the foot to jerk.  The GP said it was in my mind and I should talk to the neurologist.  The neurologist looked  at me as if I were crazy and said why would it be neurologic.  Finally, finally an ugly blood blister showed.  I’ll spare you the disgusting pictures.

New insurance, podiatrist.  He says it’s the spectral leg.

Back to neurologist.  I show her the pix.  She recommends a physical rehab doctor.  Ha, my insurance doesn’t cover him.  We go on a quest to find someone who is on my insurance and can treat my issue.  As this is going on, my walking and mobility are deteriorating.  I am hyperextending  my leg.  When I walk, I look sort of like Quasimodo and Igor.

We find a doctor, who is covered, who works with feet, is local and has available appointments.  He was honest enough to say he can’t help me.  However, his take is that the condition causes my nerves to flare and offers me drugs! And a referral to today’s doctor.

This is the first time, since the whole thing started that someone really evaluated the way I walk and move.  How come this took nearly 10 years.  No looking back but maybe, just maybe I could be in a different place now?

I explained how I don’t wear spectral leg in house.  He admired my seasonal cane.  We discussed how my neurologist and physical therapist suggested a walker.  He concurs but calls it a rollator,  He suggests it can be available in pink with a seat.  Tom quickly vetoes him on that before I can.

Next, yes a new spectral leg, an uglier one.  It will stabilize my knee and hips.  Some of me is still strong but my abductors are very weak.  He said watching me walk with my hyper extended knee hurt him.  If I don’t take care of it, I can become arthritic and the knee much worse.  I get that.  This new spectral leg is going to have major knee support and more of a back.  He says my little booties won’t work.  I’ll need sneakers or orthopedic shoes. NOT!! NOT!!  I will not do ugly.  He did suggest a shoe store and those shoes are UGLY  and a  few hundred dollars.

He does agree physical therapy and the gym are very important and will help.  Of course, insurance won’t  cover enough sessions. And I have to wear it from when I wake up.  I almot never wear it in the house. And almost never use a cane, either.

I am beyond upset.  I haven’t exercised enough.  Vicious cycle  – I can’t go to the gym so I get weaker.

This doctor, as does my neurologist, believes I can regain and retain muscle.  So Plan B – back to gym as soon as I can with existing walker, seasonal cane and spectral leg.  DO NOT THROW OUT existing ugly shoes.  DO become fanatic about clean eating/auto-immune diet.  This is the kick in the pants I need to commit.  Ugly inspires

Yet Another’s Doctor Visit – Digress and Progress

Posted on by tresswann

Every time I decide I am going to break up with my doctor, I fall in love with her all over again.

I went into NYC  Friday morning for a belated visit.  Originally, she wanted  to see me in June before my infusion therapy.  It didn’t happen.  Then came summer with the anticipated railroad problems leading us to September.  I cancelled last Monday because it was mid day, bad weather and the UN Assembly was in session.  Glorious cool weather Friday.  I wore my macrame type sandals.  It was a bit cool but they are comfortable plus I knew they wouldn’t fall off if I had to go up or downstairs.  I was walking for crap.  We got into Penn shortly after  7:30 a.m. so it wasn’t horrifically busy.  I was frightened.  If I hadn’t been holding onto Tom, I would have been  knocked over or fallen.  He had my back for the escalators which have become another ring of Hell for me.  It’s one thing getting on.  It’s a whole other thing getting off.  Then we had to cross 7th Avenue.  Yes, I was already shot before I reached the bus.  I started to become agitated and weepy as it was clear to me that NYC is gone for me.  This is where I worked.  This is where I can make real money and do something that I like.  And it’s more than that.  It’s the stimulation of the city – the clothes, the food, the lights, the culture.  It’s closed to me.  I can no longer do this.  I struggle onto the bus. Tom has to lift my left leg to get me on  The bus driver is awesome.  She asks where I am getting off so she can make sure she pulls all the way in.  I take a disabled seat.  Somewhere in the 40’s, 50’s a sandwich delivery guy sits next to me with huge delivery bags. Uh, how am I going to manage getting out?  Just breathe! Then in the 60’s a man with a scooter prepares to get on.  My bus driver ejects the delivery fellow and the older lady across from me.  “You stay”  I am amazed when someone tries to push past him as he is leaving.

I am the first appointment at the doctor’s which is good.  She calls out to me as she is coming in with her coffee.  She spends nearly an hour with me.  Sometimes, I am techy and sometimes I am so not.  I recently figured out how to make Notes on the phone.  So, I’ve been collecting all my concerns in a format that is accessible and legible.

First off, we admire my sandals as I tell her that I need a new spectral leg.  She is referring me to a rehabilitation specialist.  He will look at cane, spectral leg aka brace, physical therapy and the way I actually walk.  This is good.

Bad, she thinks I should use the walker.  The  one that has been sitting behind the door, bought with an Amazon freebie.

She tells me how I am always so well put together and how important it is for my health.  I have on the beaded and embroidered 3/4 length pants that the orthopedist thought when the beads showed up on the scan, that he had discovered a whole new syndrome.  My therapist also says I am always put together  and it’s good for my health.  I miss getting dressed for work.  I open my closet and mourn.

I have low blood pressure.  My  late former in laws used to marvel how low it was without medication.  Due to Tom’s recent cardiac adventures  and his obsessive nature, blood pressure is taken all the time.  We even checked his machine against his surgeon’s and it’s fairly accurate.  Mine is way, way low.  Doctor says, “Are you dizzy or faint”  No, that is my old stress reaction.  I turn grey and my eyeballs roll up in my head.  Doctor says, “What we say about people like you around here is that you are going to live forever.  You are good.”

We talked about my drugs.  Yes, she wants me to stay with the alpha-lipoic and the Biotin.  Okay, as I have said before I have issues around my nails.  They were bitten and ripped to the quick for years.  A few years ago I decided  enough and grew them.  They have been  long and hard since then.  Last October I had to go to the salon to have them cut.  This year, they are snapping like crazy and my hair is visibly thinning. Salon’s verdict on the nails – maybe they are too hard.  Doctor’s question – what are you eating? Ah, here we go – not enough protein.  This has always been challenging for me.  I am so not a meat eater.

Now, I find this talk of food extremely interesting.  When this journey started, I asked her boss about food and he pooh-poohed me.  I took myself and my money to a nutritionist and she gave me what I thought    was an insane diet and other doctors subsequently agreed.  If she had only said, “This is the Swank Diet and it’s been used since the 1950’s.” I would have signed up.  As things progressed, I discovered a  bunch of different ways to eat that can address this.  Two years ago, I stopped gluten for months and noticed the difference.  Alas, I’ve fallen off the wagon.  Recently, I saw that the institution that treats me has done food studies.  In case you haven’t guessed it does make a difference.

My husband used to work at nights.  He’d wake around 11 and I’d go to bed around 9.  The last night he worked, I got up to go to the bathroom shortly before 11.  I remember feeling very hot and not so well.  The next thing was Tom shaking awake from a really great sleep.  He awoke to find my body in the hall.  We have a very tiny house.  There was blood on my head.  We never knew if I passed out and hit my head on the way down or hit my head and passed out.  Lately, I have had episodes when I experience the same kind of heat and my glasses fog briefly.  And the answer is still MENOPAUSE!   She suggests also that I drink more water.

Now all this caused me to start thinking about my period, menopause and my affliction.  People always laugh because I know the exact date it started.  Easy, because it was Halloween.  So, 40 years later in October I decided enough is enough.  I willed myself for it to stop.  Wait a minute.  That’s when I became symptomatic.  Something to ponder and research.  Not sure where it will all lead.

We are now at the 25 feet walk.  First time, when it started, I did this in heels.  I tell her I walk like a toddler.  She tells me I walk like me.  So, not a good thought.  This is the  first time I have ever done it with a cane.  I am terrible and slow.  I miss walking  I miss the speed, the breeze, the joy.  Walking was how I figured things out.  It seems like everything is being  taken away.

Now, to the inspirational part, and I hate the  inspiration part, attitude counts.  I told the doctor about the woman I had met who was diagnosed this year and appears to have given up.  She is anticipating the worse – making arrangements for ramps, etc.  Here’s a difference, I told the doctor in the last few weeks, I seem to be experiencing MS fatigue.  I used to be relatively tired all the time, waking for work in the 4  a.m. hour.  This is different.  It feels like dying, I guess.  It is the most peculiar sensation.  “Have you ever considered a nap?”   I am my mother’s daughter.  Maybe, just maybe if you have a high fever.  Though I have memories before this marriage of drifting off during a Saturday afternoon radio program.  She agrees that our mothers were the same and insists I need to nap.  Here’s the thing – if I feel like I am dying, the last thing I am doing is closing my eyes and lying down.  And my life is short and limited enough as it is.  I will not waste what’s left of it napping.  The other woman doesn’t nap.  She stays in bed all day! My doctor admits that attitude is important.  She starts to tell me about a patient group.  I cut her off.  I am so not interested in people who LOVE their scooters!  Nope, this is cool.  These ladies attend all the drug dinners for free, whether they can or cannot or want to take the drug.  They get a paid night out to hang with their friends.  This is a good idea.

I leave with recommendations  for disability, physical therapy and Ocrewhatever (there is a small risk for breast cancer and I have the dense ones.  I always picture them as saying d’uh?)  I also leave more determined than ever to beat the odds.  Why not?

 

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.

 

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!

Flip Flop Girl

Posted on by tresswann

Somehow I never posted this:  And it’s summer and no flipflops:

I love flip flops.  I always have.   When I was little, the other little girls wore them.  I wasn’t allowed except for the pool.  We called them zorries or thongs.  My mother called them slam patters.  My mother had very definite ideas about children and shoes.  In the spring I wore saddle oxfords, white.  They had to be polished every Sunday night with that horrid white polish.  As soon as I was old enough not to wear them.  They became fashionable.  It is one trend that will never work for me.  In the summer, something like the Greek fisherman’s shoes.  Buckles and perforations.  In the winter, suede ghillies that had to be brushed.  Not fun.

I got away from home and started wearing them in summer on the beach.  They were like 19 cents and unfashionable.  I had more than one pair.

I met a man who wore flip flops and loved the beach.  Well, I still have his flip flops.  I would get all colors and kinds.  I would wear them with everything.

I went to a party in a turquoise mini skirt at the start of fall with black patent flip flops with a fake diamond in the center.  Diamonds on the soles of her shoes.

Then I married someone who didn’t wear flip flops and things just spiraled downwards.  He didn’t like the beach because there was sand.  I felt like I couldn’t breathe.  I left and moved home to my parents.  By that time, my mother would wear them to water the lawn.  And I did have a few that I wore with censorious views.

I moved in with another man, older.  He knocked the joy right out of me.  I left.

I got an apartment and bought pink platform flipflops with pink flowers.  My best friend same over and said Thank God you are back.  “What do you mean?”  “You are wearing flip flops again”  From then on, it was flip flops in the summer, even at work.  And I work in a bank.  During the blackout of 2003, I walked out of New York City in a pair of black platform flip flops with glitter straps.

People bring them back for me from trips.  I have ones from the Far East and from Hawaii. I could go on and on.

And up until two summers ago, I was still wearing them at the bank – gold ones, silver ones and black patent. The gold ones are still under my desk.  At one time I had over 10 pairs of shoes under my desk.

I can’t wear them any more!  My feet no longer grip them.  This destroys me.  It’s my persona.  I miss me.  Instead I have been reduced to tie shoes – back to my childhood.  This is not right.  I mean really. No flip flops?  Also no beach, no walking.  This cannot continue.

So what do I do?  I’ll tell you, I haven’t thrown out a pair, even the pink platform ones.

With work this summer, maybe I can wear them again.

Another Blow

Posted on by tresswann

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

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

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

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

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

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

Ampyra Plus

Posted on by tresswann

Well, I started the Ampyra a week ago.  I had fought against taking drugs for ages.  When I finally gave in,  my insurance wouldn’t pay for it.  New insurance pays.  And it’s reasonable.  So, I started it last Saturday.  Yes,   I was/am worried about side effects.  Uh, seizure is one?  Much trepidation.  So far, so good,  no side effects.  And I am walking better!  It’s amazing.  Thursday, I walked 11,000 steps and was not stumbling and half dead, that night or the next day!  I can’t believe it.  I am fearfully optimistic.  On the one hand, I have read the literature.  This is not a cure.  I can continue to deteriorate.  I do not want to think about this.  Here’s where I am going.  I am taking this as a second chance.  I can go back to Zumba.  I need to find my way back to the gym and build those muscles.

This morning,  I went for MRIs.  I have been getting them from a research study.  It was de-funded and the doctor pointed out that it had been two years and since my left side seemed to be having trouble….  This time the insurance is good.  I didn’t want to go.  What is the point?  I know things have changed.  There’s nothing they can do, so why?  Of course, I had to take the spectral leg off for the MRI and the tech wanted to wheel me into to the room in a wheelchair.  NOOOOO!  I stumbled and gimped on it.  Puhleez!

And I am on a roll,  yesterday I went to get a new spectral leg.  I was shown one that had two thin metal strips in the back but my ankle is too wobbly.  However, there is a graphite one with a thinner back and slimmer sole.  I may be able to wear  nicer shoes. I hate, hate looking disabled.  I am like a newscaster behind a desk – everything looks good until I stand and walk!  I am very vain and ugly shoes impact me.  And I don’t buy what some of my friends tell me about being older and not wearing heels.  Okay, I wouldn’t want to wear stilettos anyway but I see no reason why I can’t with practice and determination get back to kitten heels.   Let’s not even consider crutches or wheelchairs.

My goal is to go back to wearing spectral leg only to and from work and to ditch the cane.  Build those muscles.  So, I need to amp the clean eating.  I am on my way.