Fashion of the Times

Karl Lagerfeld has died and T, the fashion magazine of the New York Times  has been published.  What can that possibly have to do with my life, challenges, struggles?  Everything.  I joke that, “Clothing is my life.”  Well, it’s really not a joke. My mother told me when I was a young teenager that I was going to be a clothes horse My clothes are my expression.  Give me a moment in my life and I will tell you what I wore and why.  For example, my final interview for the job that finally took me to pret a porter – a lavender tweed suit with a bomber style jacket, cream silk blouse and lavender snakeskin pumps.  I was advised that if I wore those shoes, I’d never get that job.  It was in mens accessories and I had two points to make:  I was not a man and I was my own person.  A picture exists – a young me in a Jonathan Logan floral in Georgetown during the Cherry Blossom Festival.  People thought I was a model.  Sometimes, clothing is a weapon.  “A face to meet the faces you meet.”

I grew up with a grandmother who supported her children by sewing.  She didn’t need a pattern. My mother needed a dress for a charity ball and had liked a dress in a movie with Ingrid Bergman.  She took Grandma to the film, pointed out the dress and it was done.

REIMA 1940'S GRANDMA MADE DRESS FOR A BENEFIT

I never knew my actual size until I was in 8th grade as Grandma made most of my clothes.  The truth came out in what later became a pivotal moment for me.  The sewing pattern companies used to come into the schools and do fashion shows.  I was chosen by the company coordinator to model in the evening wear portion of the event.  This is the equivalent of the bride in a designer show.  She was stunned I didn’t know my size.  I was stunned I was picked. And being considered ugly by my peers, she picked me for evening wear.   It was a short lace dress with a turquoise empire top and an eyelet lace flounce. A style minus the flounce that has served me well over the years.

Fashion and clothes were just an important part of our lives.  We lived with color, fabric, sewing.  My grandmother’s idea of bliss was a good fabric store.  I still seek one out periodically to get my fix. It’s the feel, the colors, the possibilities.

Fashion was such an integral part of life that I had no idea that it could be a career.  I knew about designers, of course.  But that was drawing, something best left to my mother.  And besides, I was considered too smart for something so frivolous and seemingly transitory.  I was asked by my university placement office what I wanted to do.  My reply, “Wear Vogue clothes.”   Well, I was told with a degree from Hopkins I could do anything and buy anything.  I did eventually get to wear my Vogue clothes but not for years.

The Fashion of the Times used to come out twice a year.  Starting in high school, it was my bible.  I devoured it.  I hoarded it.  I practically took the ink off the page.  I would look at it for EVERYTHING – clothes, colors, shoes, hair, makeup, accessories.  Each category received a separate reading and evaluation.  Then which looks were my favorites, which I thought would sell (not necessarily the same) and which were bombs.  This took days.  Then I saved them for reference materials; my own private fashion library.  And I can say, I was very, very good at it. I had a manager years later who laughed because I would come up with designs similar to Ralph Lauren without his resources or library.  Fashion infuses your pores.

I went back to school.  I earned a fashion degree. My first job was at Bobbie Brooks.  And so much for a fashion degree.  I was hired because I was Libra and therefore perceived as balanced; I was the only candidate with her own personal stationery; and they thought my Hopkins degree in social sciences gave me a psychology background.  And yes, “The Devil Wears Prada” is real.   My Fashion of the Times  obsession served me well.  I have my own very specific sense of style.  And it has been recognized.  I have been blessed to attend pret a porter as a licensee.  You cannot begin to imagine my absolute, utter rapture. I remember standing outside the designer tent the first time.  It was a warm, blue morning.  I was near tears as I thought of my grandmother and how proud she would have been of me, and how envious.    And even in my lowly capacity, people noticed what I wore and commented weeks later when back in New York.

I have always been definite about what I liked and did not like.  Chanel always resonated.  I saw an ad recently  with pale blue lace pants and had palpitations.  I calmed down a bit when I realized I had nowhere to wear anything like that plus it might be a bit jeune fille for me.  Isn’t it difficult when you see yourself in your mind’s eye one way but the mirror holds a different reality? And me being my tweaky little self bought a pale blue lace top at a thrift store last year.  Important note:  normally blue is not my color.  Fashion is in the pores. Yellows, blues, greens belonged to my mother.  I was pinks, lavenders, reds, black, grey.  I liked Versace when Gianni was alive, all those wild exciting prints. St. Laurent, sometimes for a viewpoint;  Ungaro for prints and color; Vollbracht for the art; Zoran for his elegant spareness, a little Valentino, tiny bit of Calvin Klein, Max Mara.

What I did not like:  Vuitton, Gucci, Dolce and Gabbana, Armani, Ralph Lauren.  I detested Lauren and thought it wannabe and derivative.  ( I did say I have/had definite views.) I interviewed once at Lauren and the manager told me I was a classic American beauty.  NOT!! And #Metoo.  I knew what was up with that gig.  I worked for Izod-Lacoste which to me was like nails grating on a blackboard.  In my last fashion gig, decades ago, I was told to copy The Gap!  Seriously? Seriously. It contributed to the demise of my fashion career.

And a favorite memory from that fashion time, before I had the job that let me go to pret a porter.  I was out of work as happens often in the garment industry.  I had a temporary job through a connection, as basically a messenger and dogsbody for a prominent jewelry designer.  I had to deliver some jewelry to Adolfo.  Going up in the lift (and of course, at Adolfo, it was a lift and not an elevator) a gentleman said to me. “My dear, you are much too young to be dressed by Adolfo.”

I have noticed in the last year or so that I actually like the full page Ralph Lauren ads in the Sunday Styles. I have wondered whether this is due to age, new designer or both?

Sunday Styles (aka the women’s pages) are the first thing I read in the Sunday Times.  One of the things that has really bothered me about my condition is my inability to wear what I want to wear.  It’s how I express myself.  I no longer go to work so for the most part those lovely dresses and suits just hang.  They are like pearls that aren’t worn, houses that are not lived in.  They have an air of desolation and creeping deterioration. I can no longer wear the right shoes either.  My shoes destroy the line and with it some of the joy.  We can’t even begin to understand the impact of the spectral leg, cane/rollator. What’s ironic is that I am finally thin enough to wear some of the looks I’ve wanted.

Life changes.  It’s no longer Fashion of the Times but T.  I receive my Sunday supplement on Saturday.  In the past, that would have been my Saturday and Sunday.  I just opened it during the week .  I am still at the beginning.  Surprise – I loved the Vuitton; I loved the Gucci; I detested the Max Mara?  What’s going on?  Is it age?  Some of it.  A new designer? Definitely.  So, here’s the other issue – I love the Vuitton but it’s for the young Versace- Ungaro me. The things I like are too young for me.  Well, maybe not the Gucci which appears Chanelesque.  More troubling is why I still haven’t finishing devouring it.  And if I remember correctly, I only tore one page out of the previous issue.  What’s going on?  If I have left fashion behind, does that mean as a senior citizen I am finally leaving my youth behind?  I don’t think this is correct.  Women  much older than me, revel in fashion.  Age ain’t what it used to be.  Is it depression?  I guess so.  Isn’t it said, what happens when a tree falls in a forest when there’s no one there?  Is the joy gone because no one will see me? Or, that I can no longer afford it?  Disclaimer – I have only worn knock offs with the exception of two Emanuelle Khanhs and a Vollbracht.  Hair and shoes no longer apply.  Something to ponder as I go back to my magazine.

Propriety, Blueprints, Surgery

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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Falling, Falling, Falling

I have always, always fallen.  As I have previously recounted, I spent my senior year of university on the ground.  I fall when I am upset.  I had a therapist who figured out that I let my feet out from under me, literally.  I fall well because I have had so much practice.  I have also been very, very lucky.  Then we add MC, as I prefer to call it to the mix.  More falling.  Usually, for the MC falls, I know they are going to happen. I start to get an odd sensation.  Or, of course, I trip over something and can’t catch myself.

I fell three weeks ago for no particular reason.  I was on my way to my therapist and ended up on the front room carpet.  Tom couldn’t get me off the ground for almost 20 minutes.  Crawling, chairs and screaming were involved.  I bruised and hurt my hip and had huge bruise on my arm.  On the upside, and if you know me, there is always an upside, I was bruised but not broken.  This means a bit of alright on the osteoporosis.

I vended tea at a psychic fair October 28.  It was a pleasant day and whilst I was in worst condition than I was last year, I was better than I have been.  We splurged and had a lovely sushi dinner and watched a movie.  I was getting ready for bed and Tom was already in. I don’t know about you but my bathroom terrifies me.  Ours is tiny.  The handicapped stall where I used to work is larger than ours.  I have a grab bar by the toilet to hoist myself up or balance as needed.  I was thinking about one last time before turning in when I just fell.  I usually make a little cry before and as I am going down.  I fell really hard and directly onto my rear.  My body knocked the grab bar off the wall.  I landed with my legs in front of me and my back to the door.  In other words, my body wedged the door shut.  Outside, Tom heard me and half asleep in his rush to get out of bed, has fallen on his hip and is having problems getting up.  Of course, he can’t open the bathroom door and I can’t move.  I am in excruciating pain. I think it’s time for 911.  However, based on our previous history, Tom is resistant.  We are both sobbing – me with pain, him with frustration.  With a great amount of pain, I do bend my knees (good sign!) and scuttle forward so he can get in.  I know it takes forever and I know it’s excruciating but somehow we get me onto all fours and then into bed.  I demand my MMJ, Baclofen, ibuprofen, and a Chinese roll-on medicine.  I do sleep.

I am scheduled for an MRI, CT scan and xray for the 29th.  I am the only driver.  It’s literally 3 miles down the road.  Tom has declared in the midst of everything the night before that I’ll have to cancel.  NOT!! I need these tests so that my neck surgery can proceed.  I feel well enough to drive.  The MRI and CT scan are hilarious.  Well, actually not as it involves this young fellow lifting me on and off the tables as I scream.  I did forewarn him.  On a positive note, I did get  a fair amount of steps in.

I have started a new program with the MS Gym plus I do exercises learnt at physical therapy and crunches every night.  It’s so not happening.  I miss my crunches and feel I am like a wicked witch and everything is melting and sliding. My therapist tells me I am a very strong woman. I can agree to pigheaded and stubborn.

Pet peeve:  I HATE,HATE when I tell people I have fallen and they say. “I am so sorry.”  Arghh!  Did you push or trip me?  Did you fail to buffer my fall?  If that is the case then be sorry.  I say I fell because you need this information like for the tests or the dentist.  Saying you are sorry makes me feel pathetic and childlike.  You have nothing to be sorry about.

I continue on and the tops of my hip bones are painful.  No bruises emerge as even though diminished, I have a relatively padded derriere.

The test results are available through the patient portal.  I see “edema” on the report for my lumbar spine.  Hmm, bad fall?  My appointment with  the surgeon is this coming Monday.  This Tuesday evening the phone rings after 6 p.m.  It’s my neurologist, the one who considers patients part of her extended family.  “Susan, have you fallen lately?”  “Yes, two Sundays ago.”  “Has your spinal surgeon called you about your tests?”  “No.” I hear a deep breath and know this is going to be bad.  “Susan, you fractured your tail bone.”  I feel swimmy.  “No, I didn’t.  I bruised my hip bones.”  “No, you fractured your tail bone.  I hate telling you this over the phone.”  I feel like crying and am seriously scared.  Through a haze, I hear her tell me that it’s not uncommon; it doesn’t require emergency care and my approach has been the right one.

Now, my question is, I have had the results for a week.  Why didn’t the ordering doctor look at the results and advise me?  Waiting till Monday? I rang them and the PA called me back.  Oh no worries, just do what feels  right. Methinks, I need a different surgeon.

On the upside, it’s manageable and once again, no breaks.

Bone Density Dressing

Clothing is my life.  Shallow, sad but true.  My mother announced when I was 10 or 11 that she could tell that I was going to be a clothes horse when I grew up.   She said this resignedly.  I had no idea what she was talking about and I definitely didn’t like horses.  I have always been my grandmother’s child, so there it is – life defined by what you wear. Grandma could tell you all about the lavender dress she wore when  her father’s will was read.  I can remember what I wore when going far back.  And no, it’s not  because it’s memorialized in pictures.  I remember what I bought, when and usually how much it cost.  One of my first paychecks went to a pair of Bobbie Brooks brushed denim bellbottom blue jeans with camel stitching.  I wore this for my first week of college with  a beige ribbed turtleneck. I wore a plum shantung dress with a full skirt and short jacket when I was 10 to see “The Brothers Grimm” with my aunt in NYC.  Oh, and yes, of course there were short white gloves.  See what I mean?

I dress for the occasion. For my initial appointment at Mt. Sinai I believe I had on a hunting jacket and black skirt.  I definitely wore black leather 2.5 inch heels. When I had my first MRI, I went locally and was told no metal, no bra with hooks.  So, sports bra, sweatshirt and sweatpants.  I hate being seen that way unless I am at the gym.  At Mt. Sinai, it’s not an issue as they want everything off and provide gown and pants.  It’s slightly hilarious as it’s one size larger fits everyone and I can’t wear the spectral leg.  Last month, I had to have the MRI locally again.  It was really hot so I wore an Old Navy  navy blue sundress with turquoise embroidery, no bra.  And nothing showed!  Ahem, I can “protrude”.

I decided after the MRI came back with spinal deterioration,  to get my long delayed bone density scan.  It came with the now familiar no metal  caution.  What to wear?  My plan was my Sudara blue/green pants with a green tank top.  Overnight, it was fall.  No sundresses and bare legs.  Here’s the thing – I  can’t do the sports bra thing anymore.  I am not strong enough.  Tom gets too frustrated helping me get them on and off.  Wow, have we aged! So, a totally discombobulated outfit ensued.  Track pants, a Coldwater Creek sleeveless black top with tiers (to hide the “girls”) and at the last moment a grey knit poncho because it was so cold.  On my feet, the spectral leg and my Jackson Pollack influenced splatter sneakers (Target, $11.99).  It all made me feel horrible, like an old bag lady.

The scan took place in the Women’s Imaging Center so no help from Tom.  Great news!  I didn’t have to remove the spectral leg or the sneakers.  Getting me on and off the table can only be described as fun.

Mission accomplished.  As we stumble out to the main area, the tech comments on my great sneakers.  My take on shoes is not to appear handicapped.  I hate those big galumphous black shoes you are supposed to wear.  The sneakers are something I would have worn in my old, “normal” life.  I can’t say that for all my shoe compromises.  Many times, it feels patronizing when people tell me how they like my shoes. IMG_2055 I know, I know; it’s the effect I strive for.  I am not sure how often people say this to able-bodied people. The tech and another one wish they could wear ones like that.  They are not allowed.  They must wear all black including shoes.  Their feeling is that being able to wear color would help both them and their patients. I agree.  There’s a difference between being professional and being somber. We all need to dress for the occasion.

The Theory of the Universe, Bugs, Mobility and Me

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

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

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

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

So, you see bugs and I don’t agree.

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

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

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

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

Define, Confine, Shopping and the Web

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

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

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

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

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

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

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

Learning New Words – All this and Arthritis, too?

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

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

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

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

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

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