aging

Propriety, Blueprints, Surgery

Posted on by tresswann

In the past, in certain circles, a woman’s name was only supposed to be mentioned in the newspapers three times: birth, marriage, death.

I feel much the same about hospitals and the maximum  should be three: birth, childbirth, death.  This list is flexible downwards.  There is no need to have any of these three events in hospital.  As to myself, my birth sufficed.  It was noteworthy at the time as I was the largest baby delivered at that hospital up to that point – a whopping 9 lbs., 8 oz.  Very healthy indeed.  In fact, record breaking for that hospital at the time!  Since  I did not have children, no hospital for me.

However, things appear to be changing.  Dr. F, my neurologist, told me when I first started this journey almost 10 years ago, that there appeared to be some issues with my spine.  If it wasn’t going to definitively help my walking, then why bother.  Well, Things Fall Apart.  I have been back for my second surgical consult.  This practice lets you know in no uncertain terms if you are 15 minutes late, your appointment is forfeited.   Despite having left early, I hit construction and traffic. Having made up my mind, I want this done as soon as possible.  I gimped in five minutes before my appointment and then waited for over 2 hours! Not fun and definitely stress making.  Surprisingly, my blood pressure was 90/50; repeat 90/50.  I am normally low but never this low.  And surprisingly, they were good with that.  The first time I had Rituxin,  they were freaking at 100.

The surgeon enters along with the resident, who  is under the impression we have met before – so not a good sign.  If I was still in my youth, this would not  have been disturbing as I was highly visible and was all around.  Now, in my little old lady mode, NOT. The surgeon pops my latest MRIs and scans into the computer.  I do not like seeing these.  One, they are ugly and I do not do ugly. Two, I really do not understand what I am seeing.  So, why look? Now, Tom is a different story entirely.  The surgeon pops up my lumbar spine MRI and announces that it’s arthritic but I am old and that’s normal.  Who’s old?  Yes, there’s edema .  So, yes I have fractured my tailbone.  Too bad. There’s nothing to be done and it won’t impact the surgery.  Now, he brings up my neck.  I feel like a skeleton.  It looks like one for sure.  I have become my own Dia de las Muertes.  Tom is fascinated.  He tells the surgeon it’s just like reading a blueprint.  Dr. B agrees and they are off on a tangent on elevator construction (Tom’s old career) and blueprints.  Well, the fracture they thought they saw in my neck is not new and apparently healed. These latest tests indicate that surgery will be through the front of my neck aka my throat.  I am not reassured that this is positive although he assures me it is better.  It doesn’t sound that way to me but who am I?  The patient? What are the downsides?  Well, since they are going in through my throat, nicking my caratoid?  As an old boss used to say, “oh joy, oh rapture unforeseen.”  Not likely.  My voice could go down an octave.  It can be low to begin with.  I used to work on a phone line and people used to call back and demand to talk to Steven, me.  It’s not the worst outcome.  I may not be able to swallow, briefly.  I did want to drop a few pounds before the New Year so in a twisted way that works.  And of course, smoothies always work for me.  In terms of positive things, I won’t be one of those old ladies who can’t raise her chin from her chest.  Also, he is confident that my balance will improve.  Also, from what he describes about this impingement, I am cautiously optimistic that I will improve.

Also, on the positive side is that this is normally an outpatient procedure.  However, since I am “special” ( I tell him, “No.  I am unique.” which discombobulates him)  I will have to stay overnight.  Tom’s scheme is to not leave the hospital while I am there.  He will hide and/or stay in the cafeteria.  I anticipate strong painkillers, so whatever.  It is sweet though

Next rant.  My neurologist, Dr. F needs to sign off on it.  Since she is female I continually refer to her with feminine pronouns which he ignores and continually references he and him.  He needs to get “him” on the phone as “she” needs to sign off on this surgery.  Considering she has advocated for this for 10 years, I do not envision problems.  I feel comfortable with his arrogance, a necessary trait in a surgeon.

I am scheduled for December 11 which is just about perfect.  I was able to conduct my last Elves Workshop, traditionally held Thanksgiving Friday; Hanukah, Christmas tree purchase (the joys of being interfaith), my tea vendor show and our annual holiday centerpiece class.  I know I am lucky that this is only my second stay in hospital.  And on the upside, maybe I’ll buy blouses instead of pullovers?

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Things Fall Apart

Posted on by tresswann

I have always had atrocious handwriting.  I received an A in penmanship first quarter 5th grade.  Both the teacher and my mother thought I had doctored the grade until they realized it was in his handwriting.  I received a D for the next quarter, had to stay after school and had a special book.  Alas, to no avail.  By the end of my first semester in college, my dorm mates said I could encrypt anything against Russian spyware.  I was in trouble my second year on.  My parents, in particular,my father were concerned about my wellbeing – academic and personal.  My father was a writer and an editor.  He was interested in what I was reading and would edit my papers.  This usually occurred after the paper had been graded.   I soon figured it out.  With right amount of charm and angst, I could get Daddy to read the texts and send me notes.  These could then be lifted almost whole and used for a paper.

As I said, my life took a very bad turn from my sophomore year.  However, I did find my groove.  For those of you who have only seen the fashionista side of me, there’s more.  I became excited by African and West Indian studies. Take a deep breath.  My particular area of interest was the syncretization of African religious forms in the colonial world.  Yes, I did spend the majority of my working career in financial training.  I had wonderful, absorbing classes and read amazing things.  I loved it.  I was very excited to be reading Chinua Achebe’s “Things Fall Apart”.  In the ’70’s, it was revelatory.  So, back in the old days, mail was composed via either typewriter or handwriting.  I’ve mentioned my handwriting.  In terms of my typing, let’s just say that I was sent to school with erasable paper, typewriter erasers, Correct-type and tape, and whiteout.  Also, it was back when a telephone call to the next town involved extra charges, let alone another state.  The usual agreement was 1 call a week. Now that I have set the scene…

You might guess where this is going…

I wrote home very excited about Achebe.  My father couldn’t read my handwriting but could see THINGS FALL APART very clearly.  He jumped to conclusions and called me.  We sorted it out.  Hysteria on both sides calmed.  And no, he couldn’t read the novel because Achebe was not available in the Levittown of the 1970’s, nor did I need the help.

Present day, my writing is worse.  I am older but more than that, my hands are impacted by this condition.  Even I can no longer read my handwriting.

When this first started, I would run into people I had not seen in ages.  Three years ago this week, I was let go from a company I’d been with for 15 years.  I was a technical trainer so literally had worked with hundreds of people there in the NYC office alone.  The company occupied four floors of a building that was an NYC block.  I did an enormous amount of walking as part of my job.  I didn’t see some people due to they’re being on different floors and not needing me.  I’d run into someone at a meeting  or in the hall and I would hear, ” Oh my G-d, oh my G-d! What happened?”  My response, a shrug and “Things Fall Apart.”  And no, it wasn’t a stroke or an accident.  It’s not cancer, contagious or terminal.  My brain is the same.

Well, things do fall apart and are falling apart; not colonial structures but me, for real.  I have discovered since summer’s end that my spine is a mess and I have osteoporosis. My teeth were rotting.  I have acknowledged that I am in pain.  I never used to be unless I had fallen.  I went for my spinal surgical consult on Monday.  I was fairly inured to the idea that surgery was in my future.  Two neurologists said it was time. My walking was bad.  I am beyond non-surgical intervention.  When the issue was first raised, I had intense issues.  My dear friend was paralyzed after spinal surgery twenty years ago. I have always been fearful due to that. I also made the analogy that it was either like cataract surgery or laser surgery for the over 40 eye.  In each instance, change would be minimal at best.  The surgeon showed Tom and I, an in-depth section of the MRI.  My philosophy has always been not to look.  Do I know what I am seeing? Can I tell the doctor to do it differently?  This time I could clearly see something was not right. So, this appears to be like cataract surgery.  It’s so bad that anything will be better.  I was told without surgery I will be one of those little old women whose head falls on their chest.  He discovered a fracture in my neck.  I need further tests to see if this is new or old and a better picture.  This is disturbing on several levels.  I fractured and didn’t feel it?  My mother had spinal fractures and they were excruciating.  She literally broke apart.  I am so similar to my mother.  This is not a trait I wish to share.  I was also told I am two inches shorter.  Visions of the Wicked Witch.  I am too young to be melting and shrinking.  I walk worse.  I am fighting as hard as I can to stem and reverse the tide.  But. But things fall apart.

In terms of the surgery I need they can’t say if it will be through the front or through the back.  Two different types of surgery.  The additional tests will tell. It will require an overnight stay.  In anyone else it would have been outpatient.  However, because of my multiple issues, I need to be monitored and physical therapy will have to sign off on my release.  Now, back in the day, a lady only had her name mentioned in the papers three times – birth, marriage ,death. This corresponds to my view of hospital stays.  I am not pleased although I do realize the sanity of staying overnight.  May I be blunt?  I have bashful kidney/shy bladder.  This is almost scarier than any operation. I won’t be able to drive for a couple of weeks due to painkillers. I am the driver for my household.  Scary, huh? And I see another wheelchair ride in my future.  The surgeon is disclaiming all over the place about my prognosis as is my neurologist.  I’ll still have MC and they say it probably won’t impact my mobility.  I remain totally optimistic that I will be improved on all kinds of levels.  If not, why bother?

Things Fall Apart! But… But..

 

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.

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.

 

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

Mourning Clothes

Posted on by tresswann

I know it sounds trivial but I am mourning my clothes.  The weather has  snapped and I need heavier clothes.  The way my house is structured there is only one real closet.  We do have armoires upstairs, keyword – upstairs.  I have enormous problems going up and downstairs without having anything in my hands.  I used to work in the garment industry and from time to time in retail sales.  I know how to carry tons of clothing over my arm.  I used to do it without even thinking about it. Now, I have problems hanging one suit in the closet.  Plus, I am dependent on T to get up and down the stairs and carry things.

So, this morning we go up and I want to bring my winter things down.  I’ve already brought down most of the casual stuff – the sweaters, the cords.  Today is for the business and dress stuff.  Each season change, it’s like running into old friends.  This year,  there are new and different options.   I weigh less so fit into different things.  And since I constantly have to use a cane instead of making the spectral leg visible, I have more options.

I bought some beautiful suits and pieces when I returned to work last year.

I start making a pile for Tom to take downstairs.  “Where are you going to wear all this stuff, really.”  Rub it in.  I worked from mid-February last year.  And the winter before that, I interviewed heavily.

We brought the clothes downstairs.  I don’t want to give them up.  I have always had a definitive sense of style.  I express myself through my clothes.  I do not want to live in sweatpants and jeans.  It’s not who I am.  I miss my dresses! Forget the party stuff.  I left all that black velvet upstairs.  I haven’t been to a party in years.  I was down to one holiday luncheon or dinner a year.  It’s hard for me to navigate.  NYC is out of the question.

People barely dress any more.  It is depressing to see all the faded jeans worn by faded people.  Where’s the sense of excitement?  Where’s uniqueness.  Let me date myself further by saying I sound like Hermione Gingold in both Gigi and A Little Night Music.

 

I have more pants than ever.  I was brought up in a household where ladies don’t wear trousers.  However, I need them for interviews  so I don’t terrify potential employers completely.

Today, I am realizing who am I kidding?  I have had 1 in-person interview since July.

I want to get up most mornings and wear my clothes. I want to preen like a peacock.

This condition is trying to destroy my soul.  It’s tried to take so much from me.  I have to draw a line in the sand, somehow.

Jeans are not just Jeans (and the Memory Motel)

Posted on by tresswann

Just about 20 years ago, I was living with a man, may he rest in peace, and it was not good.  We reached a point where he took everything out of me.

I have never real been a jeans person.  I was brought up in a household where ladies didn’t wear trousers, let alone jeans.  I always had the odd pair for mucking about.

I left him, started a new job and moved.  Not too much stress. Still, as is my way, we stayed in contact.  Prior to getting the new job, I had been pretty much subsisting for several years.  Jeans were not a necessary.  I was unhappy with him.  I gain weight when I am unhappy.  He gave me jeans that no longer fit him.  At my new job, there was dress down jeans Friday. The 20 year old used  to laugh and say “Boyfriend jeans.”  I was happier and walked tons every day.  The weight melted off even though I had a big cookie every day!

I had been in straitened circumstances for a year.  However, the following year, I bought a pair of jeans for me for nine dollars.  I also had tons of vacation time and little money.  One of my friends had a holiday voucher he hadn’t  used for Montauk.  I loved Montauk.  This was in the very early aughts before it became a hipster destination.  I paid my friend  a nominal sum and headed  East.

Now, in the early 80’s I had a share in a house in Amagansett with the 70’s high school cheerleading squad.  They were preppy before  it was a thing.  They used to line up their Weejuns at the edge of the beach.  I was so not preppy.  Definitely, not a Weejun person.  They slept in T shirts.  I slept in lingerie.  We would go dancing at Shagwong’s in Montauk.   It was OK.  I wanted to go to the Memory Motel.  Yes, the Memory Motel  Rolling Stones one.  Memory MotelThe cheerleaders opted out.

Fast forward to 2001ish and me in Montauk.  I made a beeline to the Memory.  Well, in the intervening years, things changed.  It was now a dive bar.  Fine by me.  Me and my 9 dollar jeans and flip flops walked in.  Happy hour.  Pool tables.  Beer.  My poison has always been Scotch on the rocks.  I breathed it all in.  The man I left did not like going out at all. And when we did, he accused me of coming on to everyone.  It felt so good to be out and about.  I walked, so no worries with drinking.  And as always, men bought me drinks.  It was a different world to when I had last been up and about.  Men were trying to sell me on their prospects.  Inevitably, I picked up someone, Billy.  We went out for steak.  And he asked me out for the next night.  Dilemma – what  to wear?  I had already packed myself into the jeans.  I had to do it again but with a changed top, one that could cover my packed in tummy.  And please know, I HATE  wearing the same thing twice.

So, we go out for drinks. And he said, ” I know that Susan likes to drink.” (Ya think) “but what else does she like to do?”  Great question.  I had fought so hard to retain what identity I had that there wasn’t a lot leftover.  I forgot that I read, garden, cook, write.  Lesson learned.

I bought other jeans and no, I never saw him again.  I always packed my tummy into those jeans when I could.  Sometimes, I couldn’t even zip them up.  They became my gardening jeans.

Fast forward again to this past weekend.  Life has changed and I own more jeans.  But, and there’s always a but, I have lost weight and they don’t fit.  And the rest were somewhere else.  I don’t wear jeans in the summer.  It’s the change in season so no clue as to where they are.  The weather snapped and it was cool Sunday morning.  I had to drive Tom to the blood bank.  Gardening jeans! Hadn’t worn them in ages as gardening is something that’s been taken from me. And they were baggy.  First time, ever.  But… the spectral leg can’t be hidden.  When this nonsense and that’s how I like to think of it, first started; I preferred to wear the spectral leg on the outside.  It was a clear indication of what was not right with me.  I wasn’t using the cane at that time.  I nearly sacrificed a favorite pair of black leather pants because the spectral leg could not be seen.  Now, because of the cane, I try to keep it hidden when I wear pants.  But  Sunday, I wasn’t even going to get out of the car. Tom was upset that it was visible.  I am upset that I finally fit into the jeans, I don’t want to wear them in public.

Instead of representing the freedom they once did , they now represent the limits I face.  It’s time to give them up and move on.

Crashing

Posted on by tresswann

Well, the doctor did tell me to use the walker, at least till I meet with the rehab specialist.  I rang this week and he doesn’t accept my insurance,  However, he will see me at a clinic.  Tom doesn’t like that but we are just going to have to suck it up and go.

I have been unable to go to the gym this week as Tom is on another binge.  Aside from  the fact that the gym and liquor store are in the same center, he’s been too drunk to really go out in public.  It is what it is.  So, as an alternate measure and part of my plan anyway, I have been doing the stair stepper as much as possible.  The  most I’ve reached is 6600 steps, not enough.

So, what I did on Thursday, was lock the room door.  It is the only room in the house with a door.  This allowed me to do some thinking, writing, reading and even watch programs that I like while I did the stepper. I did get a bit wobbly.  Tom spent most of the day passed out.  After 5, I unlocked the door.  Dunno why.  Just did.  And years ago, he did destroy the door so it’s not like it means anything except symbolically.

The last few weeks I have felt myself deteriorating.  Ever optimistic, I have tried to attribute it to the intense stress that I have been under as well as the lack of activity.  In order for me to take control, I took the walker out from behind the door yesterday.  I need to practice with it before I use it outside and frankly, I needed the extra support.  I almost  never use the spectral leg or cane in the house but I guess life is beginning to change.  I struggled not to weep.  How did this ever come to pass? How can I consider this a viable option?

It happens sometime after you become an    adult.  You walk down the street and see a reflection in a window.  Who is that adult that resembles you if you were grown up?  Wait a minute!  It’s you and you are grown up.  The next step is inevitable.  You catch sight of yourself and….  Yes, I see a little, fragile, misshapen old lady.  How the hell did that happen?

It’s after 5 and I felt a bit weakish.  I didn’t have the cane in my tiny room.  I went to sit down and somehow I didn’t sit on the chair correctly, lost my balance and fell.  I fall well but still make all kinds of noises along the way down.  Tom had been passed out in the other room.  He rushed in bloodshot eyes and all.  This man does not wake up well in the best of times.  I was flat on my back on the floor.  There’s an upside to everything.  Due to drunkenness, I had  a bag filled with bags of tea on the floor.  It was supposed to have been taken upstairs and out of the way.  I can no longer go upstairs without help so it was lying there.  Lucky!  My head hit tea instead of the floor.  So there I was.  I wasn’t hurt but couldn’t move.  This is a man with three sisters and I think he might have played with dolls or maybe not because he has no concept of how real limbs work.  I literally can’t sit up.  First order of business is to get me upright.  He pulled but I have no strength at all apparently in my core.  I slid back down.  It took awhile to explain I needed something to hold onto to keep me in a seated position.  We get there.  Next step is get me to stand or into a chair. Ha!  This is when I discovered my right leg  no longer works.  It cannot bend .   I cannot even cry.  Picture this.  Sometimes, I have problems getting out of the tub.  I lift my right leg with my arm.  If it doesn’t stay up, Tom comes in and lifts it for me.   I explained to Tom that we were going to have to do the same action but not in the tub.  He was still fuddled. Back to I do not have doll limbs.  The video would have gone viral.  Somehow, we got both legs bent.  Then  I flipped over like a bug.  Somehow, I managed to pull myself up onto the chair.  Tom stumbled back to bed.

This was a pretty devastating evening.  I knew I had deteriorated but not to this point.  I guess I need to buy one of those I’ve fallen and can’t get up devices.  I am so scared and frightened.  I WILL NOT BE IMMOBILE.  I WILL DANCE AGAIN.   I must be delusional.  The only thing to do is fight harder  Someone just told me today, in another matter, that my persistence paid off.  I guess I need to keep it up.  I am losing strength all around and crashing

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?

 

Validating Tiny and Related Perception Issues

Posted on by tresswann

I have struggled with my weight since I was a teenager.  Okay, looking back, I wasn’t remotely fat.susan reima captree  However, I had morbidly obese aunts on my paternal aide and a maternal great-grandmother I never knew with obesity issues.  This caused my parents to be scared at the least hint of weight on my part.  I always assured them that I would not be obese due to my love of clothes.  That being said at one low point in my life, I weighed about 50 pounds more than I do now! I am about 30 down from when I joined SP.  I weigh the least I have in my adult life.  I find it funny that I obsess now if I go up 2 pounds and I literally feel and see it.

This year, for the first time, I have been referred to as tiny.  I find this difficult to wrap my mind around.

This week I did a tea party with people I’ve never met.  I wore my little Boho thrift shop find dress.  It says it is a size 4 but that’s a manufacturer vanity lie. IMG_0828 (1) Anyway, I walked (relative term) into the house and the host and her sister exclaimed that I was “adorable” and “so tiny”.  I guess it must be true.  I do not, do not perceive myself as tiny but am thinking I may need to rework that assumption.

Adorable was problematic for me as well.  Egads, I have entered little old ladydom!

What else did I learn/ reflect?

Well, the  reason that I finally achieved tinydom was because of my condition.  It’s not a diet.  I have changed the way I eat for health reasons.  Wait!  Isn’t that why people diet?  For me, it was the realization that what I eat impacts how I walk and possibly the progression of my condition.  If I am doing it correctly and completely, I do not have, gluten, eggs, yeast, dairy, red meat and sugar and very low fat.  The reality?  Even if I limp for the rest of my life, I am gonna have that chocolate.  I do need to get back on a stricter track as I feel and see my deterioration.  I am a fighter.

The host’s sister was diagnosed in the last year with another version of my diagnosis.  Mine is supposed to be a continual path of deterioration; hers can come and go.  It was great to physically speak with someone who gets it.  But also what I realized is that I may be made of sterner stuff.  My parents NEVER  accepted anything a doctor said as gospel.  I went to Johns Hopkins and was exposed to pre-meds so know that clay feet are a step up for some of these people.  I persevere.  I saw this woman as giving in.  Yes, I get fatigued.  Yes, I get discouraged and upset.  We pulled up to this woman’s house and I freaked.  There was a small flight of steps going in.  Once in the house, which was beautiful and charming and originally built in the 1920’s, there was a step but no railing into the main part of the house.  It was about 2 inches but I needed help.  In the main area, there was a minute saddle dividing the area.  Luckily, I saw someone else trip so I didn’t need to fall on my face.  I definitely felt I was getting the little old lady treatment by the guests.  I know, I know I should be grateful  but there’s that issue of perception again.  I still think of me as that young, vibrant woman instead of a vibrant, older lady with mobility issues.

I also realized that attitude means a lot.  I have down days and yesterday, I pretty much couldn’t move due to the expending of physical and psychic energy the day before.  But I continually fight. I believe in the possibility of miracles.  It makes a difference.