leg braces

Fashion of the Times

Posted on by tresswann

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.

New Neurologist Visit

Posted on by tresswann

I adore my neurologist, truly.  I have been involved with her since the  beginning.  She was a fellow observing my initial doctor.  When she established her practice, I jumped at the chance.  She explained Zumba and WII to the original doctor.  I have been with her since 2008.  Her philosophy meshed with mine – sometimes a fall is just a fall.  I have always fallen every time I am upset since I was young.  I spent most of my senior year in college on the ground.  The upside is I know how to fall.  I have been told, as much as something like this is possible, that I do it gracefully.  She said if I wanted to wear kitten heels it was fine as long as it was safe.  Personally, she didn’t understand why anyone would want to wear heels.  We email each other.  She practices in a multiple sclerosis institute.  This has given me access to cutting edge research and care.  We agree to disagree on what is inevitable.  In recent years, she has been saying I need to recognize this.  Inevitable is a word I disagree with.  Maybe I am in denial, however, inevitable implies defeat.  Defeat cannot be an option for me.

The Institute is located in NYC and I usually go by train.   I have weakened so that isn’t really possible.  I would have to take car service for hundreds of dollars.  Well, I really haven’t worked in three years so that is an issue.  I did try and get transportation through health insurance.  I jumped through hoops.  I have had my primary care doctor send one form three separate times.  My neurologist is considered  out of area.  However, continuity of care is not considered a valid reason.  Really?!  I have a chronic illness and was being seen by a renown  doctor for 10 years in an Institute dedicated to my condition.  I participate in research there.  This was not good enough.

I found there was an Institute, driveable from where I live.  Problem – this is where I had my second opinion years ago.  It was horrible.  The doctor literally forgot I was there.  When she saw me, she asked what I expected of her.  An f*ng miracle?  At the end when I asked what I could do and was told to live a good life.  I voted with my feet.  It would have been closer and easier. She was an alum of my uni.  Even though I prayed when I was 18 to never get sick so I would never have to deal with any of them, I tend to pick alumni.  She exemplified all the reasons why not.

So, I was faced with returning.  When I rang, I was specific that I did not want HER! Surprised! They made it with someone else.

It started off well.  I was taken more or less on time. There was even an apology for the 10 minute delay.  None had been offered at the time of the hours long wait when that occurred. It went downhill from there.  One of the things my husband and I have been concerned about has beenmy increasing pain.  The medical herb is just numbing it.  I even had to fill out a questionnaire about my levels of pain.  Nothing!  And we asked more than once during the course of the visit.  The closest we came was a suggestion to try different combinations of the medical marijuana.

I brought all three spectral legs, including Frankie.  I indicated the problems with Frankie.  Again, nothing! Onto the chariot aka the rollator.  I self-prescribed and bought mine on Amazon for $25.  I need something different.  “Your physical therapist can do that for you.”  Really? And PT?  She wrote me a scrip for her office, over half an hour away.  Tone deaf!  Diet?  Exercise?  No comment. Call me dissatisfied and back  to the drawing board.

Oh and let us not forget the Ocrevus.  I am scheduled for October 4 in NYC.    Yes, I can get it with her but my husband probably can’t be with me and I’ll be in a circle with 5 other people.  We want a hospital and a semi-private setting.

The only thing I did get is an increase in my Baclofen.  More on that in another blog.

She didn’t even ask me for a return date.  Guess the feeling was mutual.

I feel defeated as I don’t think I’ll be able to go back to my doctor.  So, another stressor, how do I find the care I need?

Acceptance and Nature – The Child is Father of the Man

Posted on by tresswann

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

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

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

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

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

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

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

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

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

Frankie, the Spectral Leg and other thoughts

Posted on by tresswann

Recently, I had a new spectral leg aka brace aka AFO prescribed.  I finally have seen  a physical rehab doctor.  This is the first time I have seen a doctor to evaluate my walking.  Apparently, the second spectral leg was totally bad for me and has made me worse.  My right knee seriously hyper extended.  Dr. O has let me know that he is letting me off easily as I really should be in a brace up to my hip.  And I am supposed to wear it from when  I wake up to when I go to bed.

A few problems with that.  I am known for both wearing and not wearing shoes.  I used to wear super high ones at work .  And I would kick them off during meetings.  My old, late boss used to say “Sweetie, I pay you enough to buy shoes that fit.”  (He didn’t)  The first thing I would do when entering the door, was kick off my shoes.  I spend most of my time barefoot.

The new spectral leg is TERRIBLE.   I call it Frankie, short for Frankenstein.  My physical therapist says I should call it Roboleg. And the walker, the Protective shield.  NOT!  Frankie, it is.  Frankie has bolts like Frankenstein’s monster on the ankles.  My cousin says it looks like a villain in a Bruce Willis movie would wear on the top of his head.

Frankie is uncomfortable.  I can see how it helps me walk.  I can’t get past four – six hours. My foot still burns. And it is so ugly.

You know what has always bugged me?  When people are challenged and have bad eyesight and they are given those glasses with the heavy black frames and the coke bottle lenses.  I mean, seriously, is this necessary?  In this day and age, can’t people have nice glasses?  I had a best friend who was legally blind in one eye and her glasses looked nothing like that.

So, it hit me, why in this day and age, should I have to wear something ugly, hard plastic with bolts?  It does not suit my life.  I do not like ugly.  I like dresses.  Frankie does not  work with dresses.  Frankie has to be worn with big, ugly black sneakers.  Frankie makes me look crippled, disabled and old.  This impacts my health.  I have read about 3D printing and how it is changing people’s lives.  Why can’t I make my own?   I told my physical therapist my plan, she agreed!  She told me I was one of the most determined people she’s met and if anyone could do it,  I could. She has even offered to advise on the technical bits.

I went to the rehab doctor the next day.  Of course, I am smart enough not to mention my plan to the doctor.  I was very vocal about its ugliness, its nonfit with my lifestyle.  I walked out of Manhattan during the 2003 blackout in flip flops. His take? Well, I could maybe get it in another color.  Yes, the fitter already suggested purple butterflies.  However, to paraphrase Tom Lehrer’s The Great Lobochefsky – Plagiarize! Accessorize! I am contemplating “outfits” for Frankie.

I have begun the research.  I’ve looked online for braces for design ideas.  Rude awakening.  My first spectral leg which was billed at $1000 is available on Amazon for 35!  What I want is something that is not going to be obtrusive yet provide the support.  No bolts.  Maybe clear?  Rigid but flexible so I don’t look an escapee from a bad zombie/mummy movie.

I also have begun to look up some of the terms associated with my conditions – knee hyperextension, foot drop. My bad, I never really looked these up in detail.   What an eye opener.  My father was a meticulous researcher.  He would be so angry with me.  Well, I also have a hanging that says “The best time to plant a tree is 20 years ago.  The second best time is now.”  So, I am forging ahead.  We will see what I come up with.  3D printing is in my future.

Musings on the NP Visit, UTIs, Pain and the Perfect Storm

Posted on by tresswann

Male discretion advised – details of my visit to my ob/gyn Nurse Practitioner disclosed.  No salacious details.

I have been seeing my nurse practitioner for around 20 years.  I was brought up to believe having these exams were responsible, important and natural.  One year, when I was out of work without health insurance and no money, my parents gave me my annual exam as a birthday present.

For me, the two worst parts of the exam were being weighed and the Pap smear.  I had a botched one once and bled for days.

I have followed R from her original practice to a newer one.  In this practice, she only sees patients one Saturday a month.  She has seen my  deterioration.  I don’t focus on it and have a tendency to actually forget I am less able.

I wake up Saturday morning with burning pee.  Good thing I am going to the doctor.  I ask my husband to remind me to tell them I need a test if I rush in and need to use the bathroom.  I use the walker because it will make life easier.

I tell the nurse I think I have a UTI.  No problem, we’ll get a sample.  The exam room is so small we have issues maneuvering the walker.  She leaves me with the cup and walks out.  The bathroom is not handicap friendly.  I cannot believe this as it is an ob/gyn practice and what about the big pregnant ladies?  I then go through a series of contortions to sit, hold the cup and collect the specimen without falling, dousing myself with urine, or dropping the precious sample.  Whew.  Mission accomplished.  Next removing everything including spectral leg.  Easy-peasy.  Uh oh, I forgot getting up on the table.  Problem, the step attached to the table moves. It slides in and out.  This is not happening.  Now, another thing my mother did for me is that I don’t have nudity/body issues in medical settings.  I find the whole gown thing on the annoying side.  My husband has explained to me that I must be aware of others discomfort.  Point taken.  R comes in and I show her the situation.  She wants to call for help.  I explain if we hold the step stable and maybe give my leg a boost, it will work.  Well, we did it but now she wants to add another gown for my modesty.  The good news is that I have aged out of the Pap smear.  I can’t begin to imagine how that would have worked.  She does a dip on the specimen and says you definitely have an infection.  Do you want antibiotics now or do you want to wait 48 hours so we know exactly?  NO! DRUGS NOW!  She phones it in and high fives me as I leave as we didn’t do the weighing thing and I tell her my vastly reduced weight.  I am almost 50 pounds lighter than when we first met.  I inspired people after dropping the first twenty.  I don’t really mind that kind of inspiring as opposed to the disease inspiring.

We stop to go grocery shopping on the way home.  Pharmacy is only a mile or so from the store so we ring and it will be ready in half an hour.  Fine, go home, unpack groceries, check email.  Ok, let’s go.  I try to stand up from desk and can’t straighten up and am in such excruciating pain that I scream.  Tom comes running in.  No, I have not fallen.  It’s my back.  Get me two Advil.  I creep out to the front room.  I have a very tiny house so we are talking less than 20 feet.  I sit down.  I try to stand and scream again.  My vision is going black and I am seeing stars.  Tom’s reaction?  I had a sledge hammer fall on my hand and didn’t scream.  My reaction?  If I had the f*ng sledge hammer right now, we’d see about that.

There is no way I can drive to pick up the ‘scrip.  Tom has no license.  “how come this is happening to you? You were fine this morning.”  Actually, my left leg which is the allegedly “good” one was really wobbly.  Next, as I am thinking how I can get the meds, and not move, and not cry, he announces his cellphone is broken. I tell him to charge it. It doesn’t work.  “We’ll have to go to Apple.”  Are you f*ing insane?  I am in excruciating pain, can’t get meds and you want Apple?  I text my stepson who was supposed to be away for the weekend.  Luckily, he’s home and says no problem I’ll pick up and be there within the hour. Dad gets on the phone and tells him his phone doesn’t work.  Kid laughs and says he’ll make an appointment.

I am blessed with my stepsons.  He calls from the pharmacy to confirm my birth day.  I ask him if needs the year and the pharmacist laughs.  This is good.  The kids know that I am older than their Dad but not by how much.

I can’t take the meds till evening.

I had Vicodin once for oral surgery.  Everyone laughed as I had to use them at work, and taught a class that usually gave me a headache.  I did a great class.  There were leftovers so I saved for a rainy day.  Tom had an operation afterwards and ran out.  He was supposed to replace mine.  He didn’t.  There were no painkillers in the house.  I took an extra Baclofen.  I am resourceful.  One of the kid’s friends smokes lots of weed.  He was ecstatic some years back when he went into a cabinet for a glass and found a baggy of catnip.  “Mr. and Mrs H…””Hate   to disappoint, it’s just catnip.”  Eventually, we told him he couldn’t visit us if he was stoned,  I am thinking of Meghan Llewellyn(@BBHwithMS) and her recent journeys with cannabis.  Two thoughts, if she has been dealing with pain like this, is cannabis enough?  And, was what was happening to me associated with my condition? I’ll do anything to ease this.  However, step was supposed to go out of state with his friend, so no relief there.  The last time I touched weed was in 1994, Good Friday.  Before that, 1980!  I only used it when I was drunk.  Bad combo as I don’t come off the ceiling for days.

My mother had a high tolerance for pain – childbirth was overrated, teeth drilled without Novocain.  I so do not take after her.  The pain gets worse.  I do remember stepson gave me acupuncture cushion.  A little relief.

I take the meds and it also begins to ease a little.  However, I cannot lift my left knee or bend it.  I am scuttling around the house sideways.  I can’t step over the saddles.  Tom has to help me into our  high profile bed.   I get up in the middle of the night and have rolled over.  Crisis averted.

So, this condition has seeped into my life.  And everything is not MS.  Sometimes an infection is just an infection.  Of course, the aftermath is worse.  Losing exercise is harder to regain.

It’s amazing how much we take for granted and how much something as simple as bending a knee means.  It’s a couple of days later and I am still a tad twingey but I can move my knee; I can stand up.

What happened?  I think it was the perfect storm of adjusting to the new Frankenstein spectral leg and the UTI, all exacerbated by my condition.

Plan?  I need to have access to MMJ!

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

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