Author: tresswann

Valentine Venting and….

Posted on by tresswann

I have never been particularly fond of Valentine’s Day. My parents were completely unsentimental. I can remember being shocked when I was about 4 or 5 that Daddy came home with candy for Mommy and me. My mother didn’t particularly like chocolate or sweets. I was not allowed. Our chocolate and candy consumption was strictly monitored. I was an odd child without tons of friends so the card exchange was always scary for me.

I remember in college not even checking my mail freshman year and by then I was cute and popular. The next day I found someone had left me a rose.

In our 16 years together my husband has given me two stuffed animals. I hate stuffed animals. My late ex-husband gave me Russell Stover chocolates the year we were married which I believe he ate. Joe, the man I lived with after that did give me chocs but also called me Gordita. So, so much for that.

Kevin, who has been the love of my life, didn’t really do it. Though I do remember one year buying a red flapperesque dress and going out for Japanese food.  It was a charming, small restaurant.  I felt pretty and sophisticated.

Valentine’s this year was horrid. My first thought on waking was the Parkland shooting anniversary.  My relationship with the holiday as always been ambivalent.  These children do not have that luxury.  It will be a day of sadness and death.  Did anyone in your high school class die?  You are supposed to be invincible at that age.  Worse, did they die of something other than illness?  Someone in my class did and we still talk and muse about it decades later.  I cannot begin to imagine the pain these kids are in and will be in, along with others their age that the day was completely altered forever.

There’s still the personal. I have been unexpectedly blue all week.. As part of selling the house, I have been decluttering so this wee kI went through tons of paper. I found that I was diagnosed with this condition 10 years ago. I should be grateful but I am not feeling it. It was February and I was about to teach a class.  As I recall, I was getting ready (I was a technical trainer) and was fiddling with AV equipment and plugs and was underneath desks.  The doctor rang, said you have PPMS.  I went back to my plugs and taught my class.  I thought it was the good kind.  Ok, so if I look at my “progression”, I am in good shape.  Me, being me, I am not.  I was so confident and oblivious.  I hate how my world has become confined.  I swore that would never happen and it did.  I am battling back.

The realtor had a realtors’ open house on Valentine’s. Everyone who came said the house was worth much, much less. This is devastating and hard to believe. I was able to go upstairs for the first time in months and understand. It’s a wreck but one that can be fixed. Of course, struggling upstairs didn’t help. It took forever and tons out of me.  It was scary.  However, it was better than last time when I had to go down on my butt and then struggle and crawl to stand.

Now, as to Kevin, he is in a nursing home in another state and has paranoia and Parkinson’s.Postal Old Girlfriends, Postal and RituxanI am trying to ring him every Thursday. “Happy Valentine’s Day, Kev.” “You are two days late.” “No, today is February 14.” From there the conversation totally devolved. I can’t even repeat it as it made no sense whatsoever. For example, he said something about my car and I told him I drive a Buick now. He told me he was surprised I bought a Swiss car.We always helped each other with cars.  There is so much we have shared over the years.  When Buster the Biker unceremoniously dumped me, he arrived with a stack of blues cds.  I held him when he cried several months later when the woman he had been seeing for years, went back to her husband.   I always tell him I love him when I call. We have known each other since 1984 and supported each other through good times and bad. It has been like a marriage.  We have been a constant in each other’s lives.  Valentine’s, he did not understand what I said. It was the start of spring training and even that produced nonsense.  He used to walk 8 miles a day for his job and when it was light, catch a round of golf.  After we definitively broke up, if one of us wanted to see the other, we’d head to the beach.  Either one of us was likely to be there.  The beach has a four mile walk. It didn’t matter who was where, the other one was, we’d turn around and walk the rest of the way, anywhere from 2 -8 miles.  Now, we both can barely walk.  Ironic, isn’t it?  My heart is broken.

I have a friend who is 95. I was speaking to her this week and long before it became popular, she told me I was unusual as I was so resilient. I didn’t understand.  I thought everyone just tried to stand up again until they could.  Many years ago, I worked for a man who used to say about me, “The child does not understand the concept of NO.”  And indeed, I have not.  I integrated a primarily all male university.  I have worked in all male companies/industries.  I have changed industries.  I have been David and gone up against a corporate Goliath.  I though I ignored my diagnosis and kept fighting.  She told me again this week about my gift.  It sounds good on paper and when I look back.  It’s never felt like resiliency or grit.  It has felt that I have lived my life as a Joe Palooka punching bag; one of those toys with the weighted bottoms that when it is hit, it pops right back up again and again.

ocean waves.jpgKevin and I loved the beach, all year round.  I have likened life to the beach and the ocean.  After Hurricane Gloria, we rode down to the beach.  We laughed at ourselves as we did so.  We wanted to make sure it was still there.  There were huge waves crashing against a diminished shore. The sea was calm within a few days. The sea is like that, sometimes calm and clear, other times waves knock you off your feet.  The waves can erode your shore or build it up. I guess I just have to wait for that wave to catch me again and build me up.

Mortality Musings

Posted on by tresswann

I am a woman of a certain age.  I remember someone at a high school reunion almost twenty years ago saying “We are in the last third of our lives.  We need to make the most of it.”  Mortality looms,  even more so with this condition.  Time is becoming more finite.  It’s not morbid or depressed.  It just is. If you have read me, you know that I have lost old lovers and husbands in the past.  Dead friends are no longer as surprising.

This month I have learned of two people from my youth that have died.  Somehow, these have hit me.

This weekend, I saw that HV had died. I hadn’t really known him in high school.  We mixed in different circles.  He was a year older. He wasn’t quite fat but rather pudgy, the type of guy, I call vanilla pudding, bland features swallowed in his face, outstanding only in his vanilla-ness.

I graduated college and ran into TM, definitely not my set, also a year older.  He was a football player.  I was a nerdy hippy type.  TM asked me out.  Fourth of July 1977 was on the horizon.  There were going to be a group from high school going to Montauk for the weekend.  Montauk at that time was still definitely, the un-Hamptons.  We were Levittown, still gritty and blue-collar middle-class.  HV was a charter boat captain and he had a house there which was to be the base for the weekend.  T and I drove out early in the morning.  People were already there.  It was a crowd from high school that had never been  my friends – football players and cheerleaders.  Since I had left high school and Levittown, I had blossomed.  Well, everyone does, don’t they?  You leave behind high school, teenage hormones and expectations.  I had shed my glasses and emerged from my chrysalis.  They saw me as a new thing.  I grew up in the era in Levittown where everyone drank.  It was a fact of life.  You went over someone’s parent’s house and you were given  a drink.  My mother’s boss, when I was 15, asked me what I wanted to drink and said, “And don’t give me any of this Coca Cola shit.”  Vodka stingers!  Even given that background and mindset, I had no interest in drinking before the early afternoon.  We walked in and were immediately handed beers.  I realized that the weekend was going to be longer than I thought.  At that age, I was very good at holding onto a drink and/or pouring it out.  I was still fascinated and slightly intimidated by the former cheerleaders.  I remember Crosby, Stills and Nash on what appeared to be a continuous loop on the stereo.  In those days, there were record players and probably everyone was too drunk to change the record.  I hated “Dark Star”.

H had also undergone a metamorphosis.  He was tan, lean, bleach blond long hair, deep, startling green eyes, gorgeous and charming.  I was stunned, tongue tied.  His girlfriend was one of the cheerleaders and so friendly to me. At some point during the now evening, H approached  T and suggested that we leave and go to the boat.  People were bleary and passing out.  The air was thick with cigarette smoke.  Levittown and jocks during that era was all alcohol and no weed.  We went to the boat.  Remember the excitement and newness of being “adult” couples?  We drank more and then T and I retired to a berth. Hormones, alcohol, excitement.  What can I say except to the inevitable outcome?  I hadn’t the experience I was to later acquire, starting with T, to understand that sex with football players is a non-starter.  T, especially T drunk, had all the technique of a stray, horny dog.  My outstanding memory of the evening was looking through the portal and seeing the 4th fireworks.  I said something about it and T thought I was seeing fireworks because of him.  I was too amazed to rid him of that notion.  He then declared that he was looking for three  things in a woman – she had to be pretty, good in bed and know how to cook.  H had already checked two of the boxes but didn’t know if I cooked.  We all passed out.  The beer started again at dawn.  I never ran into H again but still see his dark green eyes, deeply tanned legs and remember his kindness.

T and I continued for the summer.  It was the Son of Sam summer.  We were in a NYC  suburb.  T, big jock that he had been, was deathly afraid of spiders.  So, that combined with the fear of sitting in a car, led to me being practically thrown out of the car with the motor running.  Romance was not in the air.  Mercifully, I never cooked for T.

The ramifications for the weekend did not end there.  I had a high school boyfriend who I have always loved and adored.  He was an artist.  He had moved to California.  We stayed in touch in a distant way.  A few years after the Montauk party, B came for a visit from CA.  The first thing he said after we walked out of my parents was “What’s this I hear about you sleeping with H on his boat in Montauk?”  “I slept on his boat but not with him.  I was there with T.” “T, even worse!”  The world is small.  B was working temp at a factory in CA as was one of H’s brothers.  They got to talking…. And I guess it was a better party than I thought.  B and I got straight after some difficult awkward moments.  We are still friendly to this day.

The story doesn’t end there. There was a reunion of 70’s classes from my school in early 2001.  An H brother was there.  He had a few brothers.  Reunion, Levittown, alcohol.  Someone introduces me to the brother.  I go off on him.  “And you, you had the nerve to tell B I slept with H!  How dare you!  It wasn’t true and even if it was how f’ing dare you!”  Uh, wrong brother?  Levittown was like that back when we were growing up, huge families where all the kids looked the same. And we held and hold onto those associations.

The second death preceded the first death and is a different story.  A family moved in diagonally from our backyard.  There were two girls, M and C, M, a year older and C, a year younger.  The elder was fragile, tiny and stooped as she had had polio.  The younger suffered ridiculously bad acne.  High school was almost 2 miles away.  We were just under the bussing line.  I used to walk home sometimes with M.  She was terribly slow.  Children and teenagers are cruel.  As I mentioned, I was in the nerdy, hippie set.  I was bullied which made my later acceptance by T and H odd.  However, much I was bullied,  it was worse for C and M.  I have always felt it important to be kind.  It’s one of the adjectives most used to describe me in recent years.  It’s been part of my life.  Being “other” offers choices.  You can either reject or embrace the world.  I go for the positive.  As with younger siblings of odder elders, C tried to distance herself from M as did my brother.  It didn’t really work.  However, she was stronger and bigger so superficially, at least, she was better able to stand up for herself.

It is said, revenge is a dish best eaten cold. C went on to work for unemployment.  It appeared that all those years of bullying and childish spitefulness had taken a toll on her.  She was now in a position to fight back.  Unemployment is difficult in the best of circumstances.  C certainly got her own back in that position.  Nasty and unpleasant doesn’t begin to describe it.  I remember once telling her but I was nice to you!  I moved out of the neighborhood and stayed employed.  They passed from my existence.

Then I saw a notification on my high school FB page from a former childhood neighbor that C had passed away.  Sad.  But.  People who hadn’t known her expressed sympathy and condolences.  Fine.  I don’t understand that but it’s the intent.  The guy who posted was also her age; she lived directly behind him and he was also distinctly odd and bullied.  I have no idea of the depth of their relationship. What did amaze me was the comments of the people who had known her.  One likened her to a “shy kitten” yet despite this I remember him being one of her tormentors. The family had a name that was similar to a brand commercial.  Some people remembered calling this out to harass the sisters.  Most of us grow up.  What disturbed me was that these people expressed no regret only an “I remember doing that to them.”  Now, written  in my yearbook as well as in later years, I would run into people and they would express regret or that they wished they had known me better or they went along with the crowd.  I was horrified that there was none of that for C. So, how much has really changed for some people since high school?  Are we stuck in a high school/childhood loop?  How and why do some of us change?  I like to think that I have but maybe not?  The childhood neighbor wants to friend me on FB but I have no interest. Yet, I am close on line with childhood people that I had issues with in high school.  I remember working on my 10th reunion and a mean girl was on the committee and she told me I was no longer weird.  I told her I was the same as I ever was.  I believe I am except I had contact lenses, a good hair cut and an enviable job.  I always told people after high school that perception changed just as long as you were well-groomed.

Two passings.  Two different lives.  Carpe Diem.  What will be said after I’m gone?  Will I be remembered as the Montauk girl?  High school nerd?  Or the woman who can’t really walk, the disabled? Or the woman I see myself as?

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?

.

 

Falling, Falling, Falling

Posted on by tresswann

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.

Fourth Wheelchair Ride, Ocrevus and Other Tales

Posted on by tresswann

Well, if this is Mt. Sinai, this must be a wheelchair.  Right!  I was scheduled to see my neurologist prior to my second Ocrevus infusion.  She’s on 98th Street and the infusion was on 102, four tiny blocks.  As I have mentioned, I did see a new neurologist closer to home.  She works under the doctor who provided my confirming diagnosis.  I recently connected with someone who had her as a doctor.  She called the 2nd opinion doctor a “robot genius”.

The stopgap neurologist had upped my Baclofen to 6 pills a day. I felt I didn’t want or need it.  I was discussing this with my doctor, Dr. F and how the other doctor was just missing.  I told her about “robot genius” and how I term the new one, “mini robot genius”.  We then had a whole conversation about med students, empathy and humanity. She feels it is lacking in her students.  She  considers me, as her patient, as part of her extended family and it shows. We discuss my signing up for the MS Gym.  Dr. F is pleased with that idea and tells me she has other patients who use it.     She assures me that even though I have deteriorated physically my mind remains the same.  I do feel like me until I try to stand or walk.

Ah, now I have to get over the four little blocks to the infusion.  I used to be able to walk a block in less than a minute in high heels!  I really thought I’d be able to struggle the 4 blocks.  Tom asks Dr. F if we can sort out a wheelchair and go underground.  No problem, she’s on her way out (she came into the office before her rounds to see me) and will speak to Mr. Mike. Mr. Mike greets me near the exit.  I get into the chair.  Tom takes the walker and we are off to the races.  It’s a beautiful autumn day in New York City so Mr. Mike decides to whisk me above ground.  It’s odd to be moving so quickly without any effort. I used to love the feeling of my body whizzing down streets, boardwalks, wet sand.  We are zooming along city blocks.  It’s dizzying.  It’s the speed I used to walk at but now I am in a chair and relatively invisible.  I am invisible until we get to the building and the elevator.  Even though this is an hospital, people get slightly huffy by the elevator.  The chair disrupts the space.  Mr. Mike is a rockstar in this building as he used to work here.  The acclaim becomes even more pronounced as we get to the infusion floor.  Apparently, I am confused by referring to it as an infusion.  In this world that’s for cancer patients.  I am here for therapy.

Tom has been insistent that he will demand Nick, my previous nurse as he knows exactly how to hit my one vein. No, I’ve never had a drug issue but skinny veins.  Nick is not in and I get a new nurse.  She is a compact Filipina nurse.  Years ago, I had a temporary  fill in job with a Filipino family I knew.  I described it as selling Filipino nurses to hospitals.  I was terrible at it but apparently the idea was sound.  C looks at my chart and states I must have a good vein other than the one in my hand that Nick has noted. She gets a heating pad, wraps me up and finds a  vein in my arm.  This means that instead of having a needle in my hand for  4- 5 hours I could have it in my arm.  It makes it a little easier.

I am used to the infusions by now.  Tom gets his fill of HGTV as he sits by my side.  I get uninterrupted reading time.  The problem is that I can’t use the facilities for the infusion period.  Actually, I can but it is involved so I have always held it. Yes, in Uruguay as a thirty something for  13 hours!  Buckets and newspapers and curtains that don’t close, do not work for me.  My luck finally ran out this time.  With close to 90 minutes left, my bladder had it.  I caved.  An expedition was needed -an aide holding the IV pole and me, Tom following behind with the walker.  The fun started when we reached the bathroom.  I do have bashful kidney/shy bladder but we were way beyond that.  The three of us caravan into the bathroom.  Now is the tricky bit – the aide has to leave, the pole needs to be held up and me, too.  My recollection is just of me crying out, “no, no I don’t want to fall.” She is tiny, smaller than my new 5’3″ stature but strong. Somehow we manage to get my pants off and me situated while Tom keeps screaming at me, “Be careful of the IV! Be careful of the IV!”  I walker it back to my chair with Tom holding the IV.  The aide literally left. The rest of the procedure is uneventful.  As usual, the next day I was my usual boiled lobster color.

I did come out of it with a somewhat brighter attitude.  I always get a brief bounce from the Ocrevus.  Plus, I have felt that I was getting weaker.  Dr. F asked if I had had an infection.  Bingo!  Teeth.   There’s hope once more at the bottom of Pandora’s box.

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..

 

Batik and Not Happy

Posted on by tresswann

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

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

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

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

MC, Osteo and Me

Posted on by tresswann

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

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

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

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

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

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

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

Bone Density Dressing

Posted on by tresswann

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

Posted on by tresswann

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

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

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

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

So, you see bugs and I don’t agree.

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

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

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

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