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The Lady of Shalott, Me and Pandemics

Posted on by tresswann

I am truly my grandmother’s child.  Grandma shared with me. As was common for women of her generation, she had many things memorized – the Bible, poetry.   I adore the Victorian poets.  This must in large part be attributable to her. Grandma introduced me to Tennyson.  So, while others in high school found Idylls of the King tough going, I did not.  One of her favorites and one that appealed to the dramatic, romantic teenager was “The Lady of Shalott”.  For those of you unfamiliar, the story is that the Lady is cursed, confined to her room and sees the world on the river  pass by.  She cannot venture out but sees the world reflected in a mirror.  It works for her until one day she sees Sir Lancelot drifting by on his way to Camelot.  The mirror and distance will no longer suffice.  She breaks out, gets in a boat, unleashes the curse, floats down to Camelot and dies.  Ah, melodrama, the romance.  What stayed with me through the years was the Lady of Shalott not being part of the world but viewing it through a mirror, removed.

I have often thought of the Lady of Shalott in recent years as my world narrowed.   I used to sit in my home “office” and look out the window into the backyard garden and woods.  Indeed, I was unable to venture into the yard without assistance as there were uneven, unrailed steps.  I watched the world go by.  I missed the smell of the air and the earth.  I missed the feel of the sun on my body.  I watched.  I wanted to break free but knew I had to be safe.  It’s hard to express how confining it felt. I could still see but wasn’t an actual part of the outside world.    Almost no one understands when I reference the Lady of Shalott.

Another Grandma legacy – “for now we see through a glass, darkly…” It was one of her favorites and always appealed to me.  The adult me can connect it to the Lady of Shalott.  Hmmn.  As I age and become more infirm, mortality looms.  The phrase takes on a different aura.  It resonates.  It’s one of the verses that repeat as I stare out the window/mirror. What is seen? What is known?

It came to me recently reflecting on the pandemic and its conditions, that I have become what people used to term ” a shut-in”.  I do not leave the house.  We moved into a new home March 10 which is the last time I had human touch contact with someone who wasn’t my husband.  One of the movers literally carried me into the house as I really don’t walk well.  The cable guy came by on March 13. We were distant as I couldn’t move. I can quantify my contacts.  I closed on March 5 so there was the Uber drivers, the receptionist, the realtor, the attorney.  Before that, the realtor came to tea in December. I truly do not have much physical contact. It’s more extreme here than it was before I moved but not by much. I used to drive and from time to time struggled into the library or the grocery. How I hate reading and writing those words.

I was extremely introverted as a child to the point that people thought my parents only had a son. I am used to being quiet and unseen. I overcame. I took a Myers-Briggs test once and I am now an extrovert. The examiner knew I had been extremely shy because of my results. She said I overcompensate. I enjoy people. I enjoy their stories. I watch and listen. My parents used to call me Madame DeFarge.

Another factor in my Lady of Shalott equation: I have been a pioneer. I was one of the first women at an all male college. I became used to being an “only” and somewhat isolated. Because of this careerwise, I have been successfully one of the few women in… I worked for years as one of the only women in management at a company. I learned how to balance my world so that outside of work, I could have females in my life. I became a woman in an IT department. Not only that but I would venture to say I am probably one of the least IT people you could meet. You are reading me. I am so not linear. I bounce. So, again, I know how to compensate. I used to take creative classes – at craft stores, the library. I played with flowers, painting, mixed media. It all balanced the IT numbness. I know how to do this. I may be a Lady of Shalott but I have a big mirror. Even before I became confined, my friends were spread over a wide area. Th Internet age has collapsed and opened the world.

So, back to Grandma and the pandemic. Grandma’s story is a romantic one. She fell in love with a man old enough to be her father. Indeed, his daughter was older than Grandma. The family objected and put her and her sister, Beryl on a ship to the States (Grandma was Jamaican)

Beryl and Leonie

My grandfather was a ship’s pilot and he snatched her off the ship. They eloped and married. Beryl went on to the States, alone.

So, what does this have to do with the pandemic? Beryl died in the Spanish flu pandemic. My grandmother felt guilty for Beryl’s death for the rest of her life. I was raised on the conjoint story. Beryl’s death was blamed on her not understanding the change in the weather. She must have not dressed correctly. Remember, this was over 100 years ago. Our family rule was once you put on your winter coat, it was on. If it was 72F in December, you kept the coat on. An unseasonably cold day in May? No coat. Beryl’s story became our story. We knew what a pandemic could wreak on a family. Beryl lives forever frozen in time and disease.

The Covid 19 pandemic brings Beryl back and is very real. On the other hand, having been the Lady of Shalott for so long, I am used to interacting with the world through my mirror. But a mirror doesn’t prevent you from engaging in life.

St. Pat’s, the Ides, Anniversaries, Joes

Posted on by tresswann

According to my mother, her grandfather emigrated from Ireland to Jamaica.  This is not unusual.  My father was Eastern European Jewish.  St. Patrick’s Day was always huge in my house.  We always had corned beef, cabbage and beer, even for us littles.  Amongst the most played records in our house was an Irish sing-a-long record.  I am constantly amazed that my husband, whose father is the first of his siblings born in the States, does not know the words to any of the old songs.  A few times, when I was older, I treated the parents to the Chieftains on St. Pat’s.  All that being said, I can’t stand the holiday, never could.

St. Pat’s was insane when I first started working in Manhattan.  Firstly, and the one thing I am in agreement with my brother-in-law, was that the trains were crammed with non-professional commuters.  This had nothing to do with work classification but rather with knowing how to commute.  Secondly, it was the era where smoking was allowed on the train and the revelers would smoke even if it was a non-smoking car.  The streets were clogged with drunken teenagers and others.  By the end of the day, the celebrants were vomiting on the streets and in the train.  If I could, I’d call in sick.  As to driving at night, it wasn’t happening for me.  Even in that relaxed era, I was not voluntarily putting myself in the path of drunk drivers.

On the other hand, I am writing this on the Ides of March, which as a teen, I did celebrate.  I was part of a group of nerdy, good kids in high school.  Today, the weather is similar to those long ago remembered Ides, warm with wind.  Our group would cut school and walk several miles to what was then called Salisbury Park.  We would run around and walk home late.  We had read Julius Caesar and it had captured us.  Bear with me and this will come together.

I have written before of my postal worker.  He is extremely Irish so my husband reminded me this morning to make sure I ring him this weekend.  Another thing about me – I remember lots and lots but lack a certain feminine snetimentality.  I rarely remember the dates I met some of the important men in my life.  For example, I know I met my college boyfriend at the PhiGam TG but not a clue as to date.  He used to send me anniversary cards.  I never remember my anniversaries for either of my weddings.  Well, I realized after my husband said to call, that I actually met  K St. Patrick’s Day 1984.  35 years!  I only went out that night because a girlfriend was depressed and begged me.  It was at a club across from Salisbury Park, so very close.  We were fairly inseparable until 1988 when I left him briefly for RC, direct from Ireland.  We stumbled back together until 1991.  I married in 1992.  We have never, ever not been in contact with  each other.  As I have said before, in many ways, we have had a marriage.  We have stuck by each other in sickness and health; through our relations with others; richer or poorer. Postal, Old Girlfriends, Postal and Rituxan

Years go by and I am working with a fellow named Joe S.  He is 12 years younger than me.  My first marriage is over and I am licking my wounds.  Joe S begins taking me to Karaoke nights at the local bowling alley.  He is an aspiring actor and writer.  I see him in plays.  He allegedly has a girlfriend.  He kisses me.  I spend evenings at his mother’s house whilst he plays the piano.  She looks at me meaningfully and tells me she will build an apartment upstairs for any girl Joe marries and babysit the children.  One night I have to tell her that I am only 12 years younger than her.  He rings me one St. Patrick’s Day as his girlfriend has stood him up and he needs a “date” for a party.  I used to be good “arm candy”.  OK.

The  phone rings again.  This time it’s Joe T, also much younger than me.  Where were these people before I married?  He, too wants to go out on St. Pat’s.  He has taken me to parties before that remind me of my youth – arty and weed filled.  We compromise on a drink for the following week.  I enlist my best friend to go with me.  It’s a club up the street from me.  It used to be a roller-skating rink and an ice cream parlor.  We walk.  Joe T falls hard for her.  In the meantime, I meet JoeBe.  He is much older than me for a change.  My father can’t stand him.  Every time he calls and says, “It’s Joe.”  My father replies, “Which one?”  Daddy delights; JoeBe steams. He lives across from Salisbury Park  I go onto live with him  someplace else for several years.

So, I remember my “anniversaries” with K and Joebe.  Joebe and Joe S are both dead.  I was at work one day and saw a 1 year memoriam on Joe  S’s passing on the Ides of March, March 15.  Joebe died a few years back. Mortality, Perspective and Balance,Men, Gypsies and a Funeral

This is a weekend for remembrance – the giddy, happy celebrations of my childhood, the anniversaries of important adult relationships and passings. Our journey is an unknown road with bumps and detours.

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..

 

Learning New Words – All this and Arthritis, too?

Posted on by tresswann

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

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

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

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

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

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

Urgency, Bathrooms and Mascots

Posted on by tresswann

I go to vendor shows to sell tea and tea accessories.  In the last 6 months or so it has become challenging.

Yesterday, I was signed up to do one at a church in the town I grew up in.  The weather was filthy but it was to be indoors.  Now, I grew up in this town and literally walked or drove by this church thousands of times.  I have never  been in  it.  We pull up yesterday.  Thank goodness for the handicapped sticker as I didn’t need to park on the grass.  Here’s the problem, in order to get in, we need to go down a long driveway.  Tom always argues that I shouldn’t use the walker but there is no way I can do this on my own.  It’s a long driveway and in the scheme of things not terribly steep.  To me, it’s the equivalent of Alpine off trail skiing.  It’s slick due to the rain.  Cars are coming up and down the drive dropping their wares.  Get to the bottom and there are stairs; only three but still stairs!  Luckily, my booth is right next to the door.  Unluckily, it’s right next to the door and the rescue greyhounds so it is constantly being opened, leading a woman in late afternoon to look at my hands and say “Raynaud’s?”

We settle in.  I need to go to the bathroom.  In days past and my youth, I was always teased that I had camel kidneys.  I used to be able to hold it.  I don’t do Porta Potties nor unless over 6 hours, airplane bathrooms.  I recall once flying to Chicago, foregoing the facilities so as not to miss the bus to the hotel which was supposed to take 20 minutes.  Hello!  Chicago rush hour traffic and the bus broke down.  Most memorable?  Bus from Montevideo to Punta del Este and back.  No bathroom in the bus.  There was a comfort stop but as it involved a bucket and newspapers.  I thought I’ll manage till we get to the restaurant.  Uh, curtained partition that didn’t close all the way.  At the end of the day, I held it for 13 hours!  Of course, with age things are different.  My mother always told me I was going to pay   for it. I actually refuse to acknowledge it’s my condition.  Seriously, why else are incontinence panties being advertised in magazines and television?

My challenge at these events is to get to the bathroom without being knocked off my feet.  Yesterday starts out looking good.  There is one bathroom.  It’s across the floor, unisex and handicapped accessible and equipped.  There are no crowds so it appears that I can navigate successfully.  The door is ajar, my husband says “Go, go!”  I start my slow gimp over.  I see two men go in together.  My assumption is maybe they are drying off?  I get there and the door appears to be ajar.  I knock, open and a flustered man shuts it.  There are still two guys in there.

Lately, what has been happening is that when I decide I should or need to go, it’s like a faucet turns on.  No real holding and I have to NOW!! So, my body is ready and set.  I begin to shuffle, do a jig and pray.  The last time I wet in front of anyone I was 8 years old and at sleepaway camp for the first time.  One minute is creeping into five.  It’s getting serious.  My husband, across the room is flipping out as his mind is moving in two directions.  First, what could two men possibly be doing together in a church bathroom? Second, poor me, if someone has been having “issues.”  Desperation is setting in and I am beginning to frantically scan the room for the organizer.  The door opens and one man comes out, closely followed by the church mascot.  They apologized.  They were changing! Emergency averted.

And going up the driveway much better than going down.

IMG_0075

Failure and Rising Again

Posted on by tresswann

I did not make it to the Black/White Masquerade party.

I did attend my tea.  I was relatively sedentary.  My friend did help me walk around the room.  With her help, I successfully bid on a Luau basket.  I guess there’s a party in my future.

The problem started because the car was parked much further than usual.  It took me about 15 minutes, easily, well not so easily, to get to the car.  I arrived home later than planned.  I was totally knackered but put my feet up.  I began to modify my plans – touch up makeup instead of redo; leave hair as is and not swap to hair ornament, leave Victorian knee highs on.  I did contemplate staying with the floral sneakers but really wouldn’t work with black chiffon skirt.

Next, I had a problem pulling the skirt on.  As much as I dislike it, it has an elastic waist.  Comic but not, seeing Tom trying to pull it on for me. Then I tried to stand up and gracefully collapsed into the chair.  Then I did it again.  It was scary.  I realized that the mask was still upstairs; the cards weren’t signed.  It was overwhelming.  I just couldn’t do it.  I hurt.  I was weak.  I would not be able to get there until much later.

I have always believed in a cost benefit analysis.  If I had to go to work in seriously bad weather or snow, I always did this.  Sometimes, I went; sometimes I didn’t.  Well, CBA on Saturday, said it wouldn’t work.  Being so collapsed, I would not be safe driving.   I would barely have been able to walk.  I was devastated but cancelled at the last minute. This is so not me.  It was always a joke when I was much younger that I was always up for a party.  For awhile, my nickname was Flash because I was always ready in a flash.  Nor did I let sickness deter me.  I recall a dinner dance cruise around Manhattan in the 80’s with a 102 fever body suit with wrap skirt, shawl and glitter.  Everything glittered for me that evening.

I was bitterly disappointed this past Saturday.  Firstly, if I had been able to go I would have needed the walker.  Secondly, that I wasn’t strong enough at all to go. So, as per my usual Joe Palooka doll self (you know the children’s punching bag toys that you hit and they bounce right back), I decided that iit’s time yet again to amp things up.  I have started the MS workout program.  If I stick to it, I should get results.  I am going to push more on a daily basis for more steps.  I will get outdoors this summer.  I refuse to bow to defeat.  My plan and goal is for this to be the last event I lose to this condition

Masquerades, Zumba, Mobility

Posted on by tresswann

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

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

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

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

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

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

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

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

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

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

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

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

Ocrevus 2nd Round, Yukons and Skinny

Posted on by tresswann

Yesterday, I had the 2nd infusion of my first round of Ocrevus.  I have noticed some tiny, welcome improvements in the last two weeks.  However,  I was not strong enough to commute so needed car service again into NYC.  It takes quite a bit of the stress out of the day but it balances as it costs a small fortune.  I am like Scarlett O’Hara – I’ll think about it tomorrow.  Instead of a Town Car, a GM Yukon pulled up.  It had two steps up and a high seat.  Fun.  The way I usually get into my little Encore is to park my butt in reverse on the seat and grab my right leg by the spectral leg aka Frankie and pull it in and then lift my leg.  The seat in the Yukon is too high for this maneuver.  I am tense as it is.  Tom is getting upset.  The   driver is flummoxed.  We try for me to sort of crawl in front-wise.   That is so not working.  Back to the other way.  Tom has to try to grab me under my armpits and push me up.  He has a hernia so this is not healthy. We get it done. The driver says he hopes he gets us for the return trip.  I tell Tom to call the car company and just say no.  Of course, he does not do this.

We get to the hospital.  Our plan last time had been to get a wheelchair once there but there were none.  This time, we discussed bringing in the rollator aka the protective shield but decided with my new minimal strength, the stick would do.  Well, as soon as the hospital doors opened, the security guard/receptionist rushed over with a wheelchair.  Oh well, might as well lay back and think of England.

I had been approaching this infusion with some trepidation due to having to have it in my hand and the two attempts to get the needle in last time.  I did have Nick, my favorite nurse, again.  He understands my phobias, eccentricities and my veins!  This time was painless.  Nick informed me that the problem is that I have skinny veins.  For someone who has struggled with weight for just about her whole adult life, this is peculiarly welcome news.  My blood test comes back good.  He even tells me my kidney has not gone up which apparently is great.

Steroid time – minimal bad taste.  Everything goes well. As I explain to Nick, aside from my blood/needle thing, I am a good patient.  Except for this condition and a propensity for pharyngitis, I have been ridiculously healthy.  I had chickenpox as a child.  I literally had one spot!  There was a measles epidemic when I was in first grade.  I am a boomer so there were lots and lots of us.  6 children in the entire grade did not get measles.  I was one of the six despite the fact that I lived in a NYC housing project.  This whole thing has come as a late midlife  unpleasant shock.

The infusion goes well except at the end when another nurse comes to remove the stent and sees my right purple Raynaud’s hand.  We calm her down

Return trip, rush hour.  Guess what?  Same driver, same massive Yukon.  But now I have to get in on a crowded street in rush hour with a bandaged right hand.  The driver is double parked and I am floppy.   A cop pulls up.  To quote an old manager by way of Gilbert and Sullivan, “Oh joy, oh rapture unforeseen.”  He says, “You don’t have to worry.” as I say “Could you please help?”  He zips by.  Ah, well.  We get me in again and we are off.

This morning I do wake up with the boiled lobster look but if fades. I am more energetic than I’ve been in awhile.  It’s easier to type.  My speed is almost normal. We went to Bjs.  My body was firing so I nearly tripped three times.  Same as the first time with Rituxin, the spirit is willing but the muscles are weak. And I was able to make it into the car easily.  I am not exhausted now.   Time to implement my plan – I’ll be doing the MSWorkout and the MS Gym along with a gluten-free, dairy-free,  white sugar -free(well, I am going to do my best on sugar).  And, most importantly, medical weed here I come!

Ocrevus, the Future and the Past

Posted on by tresswann

I have had a helluva time getting my first infusion of Ocrevus instead of Rituxin.  No, my doctor is not the problem.  Indeed, she has been a champion.  What happened?  Well, I was initially scheduled to have the 2nd bit on December 21 in the afternoon.  This means that I would have been in Penn Station, late on the Thursday night before Christmas.  Everyone agreed this was a bad idea.  I began to lose strength.  I scheduled for January but it was just above zero degrees, not healthy or positive.  I really began to weaken.  We decided to try and find a local place to do the infusion only. This became problematic.  I had to sort insurance out.  The place we eventually chose wanted me to become their patient.  I didn’t want to change my doctor.  They started asking for all sorts of things.  Every time we gave it to them and they wanted more.  Despite having authorization, they told me I had no prescription.  Then, they said Ocrevus had no idea who I was.  Back to my original doctor and back to NYC.  However, a combination of factors led to my being unable to walk for any distance with or without walker, no escalators.  We determined we would need car service to get into and out of NYC.  Why didn’t I just do this one way December 21?  Hindsight is a great quarterback.

Now, every time I have been to the infusion center, I have been offered a wheelchair.    Our plan this time was to take them up on the offer.  Well, the best laid plans….  None were available.  And we went up the elevator bank on the wrong side of the building.  We discovered this when Reception had no record of my appointment.  More gimping along.  They did intercept me in the hall though and put me in my “room” straightaway.  I was assigned my favorite nurse, Nicholas.  He understands my phobia, terrors, and how my body works or doesn’t.  I have really bad veins.  Luckily, I saw the shooting heroin film in fifth grade and decided needles were not for me.  I used to do alright with shots and blood until my college roomie said she always became faint.  Not me, I was the big sister.  Until my roommate opened her mouth.    I cannot look or deal.  My husband gives platelets on a regular basis.  This is a several hour process. I had to use the restroom once and it was  comic to see me try to walk and not look.  After one of his operations, I nearly passed out when they tried to show me how to change his blood bag.  Nicholas “gets” me.  So, bad veins, infusion and Nicholas.  I used to have a doctor who could find my one good vein.  He died.  For this treatment of several hours, they insert it in my hand.  Nicholas knows where my vein is.  Just typing this is making me lightheaded. Well, Nicholas missed.  It wasn’t really a miss but a malfunction.  He announced he had to go in again.  At this point, I felt  myself going out – cold sweat, hot, red faced, nauseous. The guys tell me no.  Seriously?  Deep breathing and ginger ale.  He gets it in.  Mind you, I keep my head averted the entire time, not just the sticking but the infusion.  Nicholas is good so even when my blood pressure goes to 95 which is not bad for me, we keep on going.  I did get the slight metallic taste with the steroids.  It finished faster than the Rituxin.  I was kept for an extra hour to make sure I was alright.

 

The car service both ways drove past the house I grew up in.  I usually try to avoid it.  After it was sold, it was completely altered.  Driving back, I look carefully and see how the other houses have changed. I am amazed that I am still in contact with half of the people I grew up with on that block.  It’s over 50 years.  Many of   their houses have also changed.  Well, after all that time, of course, houses change.  A couple of things.  I grew up in Levittown where all the houses were supposed to look alike.  They so did not.  The basic floor plan was the same so when people asked where is your bathroom; same place as yours.  What also strikes me is that I used to call it Leave It Town.  Guess what?  I am the one that stayed.  I only live a few miles away.  I only officially moved when I sold my mother’s house.  My life has been so different than what I thought it would be.

My house was across from the parkway with its woods.  I walked everywhere.  I went to the wrong high school.  It  was almost 2 miles away.  I used to walk back and forth several times a day.  Now, I wall surf. I used to walk at night with my dad for hours on the curvy lanes.  It’s too distressing.

 

The following day I didn’t wake up looking like a boiled lobster as I used to with the Rituxin.  I was just a little thirsty without craving sweet things.  And best of all, only half a pound weight gain.  I gained 5 pounds overnight with the Rituxin.  Shallow, I know.

 

I was like the energizer bunny the next day.  For the first time in months, I was able to walk without holding on.  Toddler steps but still big.  Now, I had a slight bump after the Rituxin.  My feeling  was that I was not strong enough the last times to benefit  from the infusions.  So, this time I tired to do more exercise before the infusion.  Physical therapy has been denied by my health insurance as not being medically necessary.  I have not been physically strong enough to go to the gym . My instinct is that if I amp up the exercise, it will push the drug in my body.  Just a thought.  Two days later, as Tom and I are literally discussing this, Ocrevus called.  Any questions?  Yes, is what I am doing helping with making the drug stick?  I spoke to three people and no answer! No one has asked this question? So, I am trying my hardest to power through the fatigue and minor pain to give my body a chance.

 

I appear to have had a minor bump up in stamina and walking.  My therapist noticed and Tom continues to reinforce this.

 

My next one is next week. I wouldn’t say I am looking forward to it.  I want it over and done with.  I am pushing so that I will be able to take the train and hopefully  the  bus there and back. I am hoping for a bigger bounce from the 2nd go round.

 

And my “secret” weapon?  I am going to try some mj after the Ocrevus.  The more I learn about it, the more optimistic I am.  I hear people are walking.  That is my goal.  What do you think? What has been your experience with Ocrevus?