MS

New Neurologist Visit

Posted on by tresswann

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

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

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

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

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

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

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

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

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

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

Look, Ma. No Pain. Teeth

Posted on by tresswann

My mother had an extremely high tolerance for pain.  She used to have her  teeth drilled without Novocaine.  She also claimed that childbirth pain was vastly overrated.  Period pain and cramps?  In your mind.  She worked with someone who had to take Percocet monthly and Ma just disdained that.

Me?  Cavities- I used to get gas and Novocaine!  Teeth cleaning – numbing agents.  I was so not her.  In fact, when she finally admitted to pain with osteoarthritis and osteoporosis and cried, I was terrified.

My husband also believes that pain is mostly in the mind.

In the last 6 months or so, I have been in pain but due to my upbringing, not really acknowledging it.  Following my mother’s  lead, I have just looked at it as part of my new reality.

I started taking medical marijuana a month ago (more in another  blog).  My impetus was based on hearing people report improved mobility.  Yeah, I mentioned pain but just to justify the prescription.  Guess what?  I found that it numbed or lessened my pain.  My right leg is the one most effected by this condition but my left knee feels like it is a football.  Even with the MMJ, it has been a constant throbbing presence.  I have been unable to concentrate.  It has impacted my ability to do everyday things.  Some days everything just hurts.  I am my mother’s child.  I soldier on.

One of the areas that has been hurting is my teeth.  I have had two huge holes in my teeth.  I chipped a tooth a couple of months ago and it has just rotted away.

Let’s talk about teeth and my condition. Due to losing my job (I didn’t lose it; they let me go), I found myself with  a huge open hole in one of my teeth.  I thought I couldn’t afford to do anything about it as I was trying to keep three households afloat on unemployment, severance and savings.  I am convinced that this was the gateway in for my condition.  I did have a huge infection.

I had my first cavity at 18.  My great-aunt lost her first tooth at 92! As an adult, my teeth continued to deteriorate and I have had root canals, crowns, implants and extractions.  With one of the first extractions, I was given Vicodin.  Amazing!  I was still going to Zumba and did really well.  I taught a class that literally always gave me a headache with no stress.  I told my neurologist.  She laughed and said it was addictive.  I said at my age, “Who cares?”  She gave me Baclofen.  It didn’t hack it.

I went to the dentist a few weeks ago.  I allegedly have dental insurance through ACA.  According to that dentist, most of my mouth needs extractions and  root canals.  Of course, insurance either denied or referred to a subpar clinic.  Once I acknowledge my mouth, I take care of it.  I have learned the hard way that dental is not the place to scrimp.  I headed back to my favorite, expensive oral surgeon. My MMJ supply is also running out and I need to go for a refill. My thinking was that I could make it till next week because I would get Vicodin.  Well, he took out three teeth last night.  Two next to my upper front eyetooth.  No Vicodin!! Just regular ibuprofen.  This surgeon is excellent.  No pain.

Of course, me being me, I went for sedation.  So, last night, no pain, just blood.  And in addition to the Vicodin, I have been looking forward to antibiotics.  I know I have an infection running amok in my body so drugs will kill it.

The brilliant thing is this morning I woke with NO PAIN! NONE!  Not my legs, not my head, not my shoulders, not my teeth.  I am walking more freely. I can almost type the way I used to.   I can actually concentrate!  Bad news is this probably won’t last.  How can I get this effect legally, cheaply and regularly?

Anniversaries and Losses

Posted on by tresswann

July marks several anniversaries for me.

July 3, 2000 found me starting a new job at the omnipotent megalith hereafter known as The Bank.  I have told this story in a blog before.  Whilst I was in orientation with the HR person, I was informed there was no early leave at The Bank.  My initial thought was , “Why are they talking about retirement when this is my first day?”  I found out that since July 4 was a holiday, I could not leave early.  Really?  My manager sent me home at half past two o’clock.  My plan was to stay a year.   I live outside of NYC but NYC is my place to work.  Unfortunately, most people have a bad sense of both geography and commutation.  It takes me less time to get into the City than people who live in the other boroughs.  I needed a year back in to quash the naysayers.  Overall, I was there more or less for 15 years!  My mother used to say, “Do two, maybe three, strive for five.”  My parents were totally anti-corporate which also means no pension, no benefits.  I started.  I hated it.  I tried to get another job immediately.  The Bank had surveillance cameras throughout its offices.  No one knew if they really worked.  I am sure they must have as literally hundreds of millions of cash and checks passed through there daily.  When I first started there people could actually make cash deposits.  I remember seeing a 25 million dollar check being casually processed.  Back to the cameras.  So, every morning I would look up at a camera and carefully enunciate. “I hate working here.”  No luck.  I went on a business trip to California with my manager and his manager.  I am a technical trainer so I was training the staff on how to use technology that did everything a real teller in a bank could.  Due to space limitations, the managers had to be in the room with me.  They loved my approach.  In a last ditch effort, I told the senior manager that most days I felt like a square peg in a round hole.  He told me he felt the same way.  So, instead of becoming my ticket out, it became my ticket in.

2001 arrived and I made ready to move on. September 11 happened.  And here are parts of the reason I never liked The Bank.  NYC on September 11 was an odd place to be .  I was in Midtown but no knew what was really happening. People started leaving.  The Bank’s policy was to never expense employee meals unless travelling.  Even then they had a global policy of $45 daily for everything if you w ere travelling.  By the afternoon, one of the managers said he would buy pizza for everyone still there in our department.  He was admonished and advised he would not be reimbursed.  I ventured back into NYC on the 13th.  I had been due to teach a class on loans.  I felt that needed to be placed on hold as people adjusted to our changing world. I went to the floor where the students sat.  It was just past 9 A.M.  And the first day back in Midtown for many of us.  You could have heard a pin drop as people sat at their desks, heads down, working furiously.  I still refused to teach the class.

I worked in the IT area and was hired specifically for my non-techie self.  Someone there told me I would like “The Big Bang”.  It’s because some of the people were just like that.  Despite all this, I stayed even after my group was let go.  I was brought back as a consultant for another 11 years.  It worked.  I was mostly on my own.  Despite the lack of benefits, I made nice money.  Almost too much money as it were because it was difficult to get something similar.  I worked alternate hours 7:30 – 4:00 or 4:30.  Eventually, I worked  7:30 – 3:30 but I was always available before and after hours.  In fact, due to my West Coast following, I took calls and emails till 9:30 or so. I also worked remotely on Fridays as commuting became dangerous for me.  I also worked remotely in bad or hot weather.  This was the job where my mobility began to give out.  My standard line (feel free to use as you see fit) was, “It’s not contagious. It’s not cancer.  It’s not terminal.  And, there is nothing wrong with my brain.”  For the OMG! OMG What happened to you crowd, I would laugh. “I am just falling apart.”

It all ended badly.  My reasonable accommodation was removed.  I was made a truly insulting offer to become an employee which was totally unacceptable.

I struggled to find work.  I was a woman of a certain age who had been at a company too long and walked with a cane and the spectral leg aka brace.  Hey, my canes were seasonal and pretty.  I finally found another position more than a year later.  Enormous pay cut and more responsibility and work.  So, this represents another July anniversary.  On July 14 last year, Bastille Day, Liberte, Egalite, Fraternite,;  I walked out. I could still do that.  I had the misfortune to work for a mean girl from high school.  I loved the company and the people.  It hurts.  I had more personal interactions there in 5 months than I had in the 15 at the Bank.  People miss me both places.

My feeling, rational or not, is that losing these two positions has severely impacted my health.  And I hate the phrase, “losing a job”.  I know where it is.  It’s not lost.  At the Bank, I walked 10,000 easily and often.  The building was a city block and I walked to Grand Central , walked through Times Square Station and then Penn.  The next job had much less walking but phenomenal people.

So, this week I am marking a year without working.  I have become officially disabled and un officially retired.  This is so not what I wanted or envisioned.  It’s hard.  I miss getting dressed – clothing is my life. I miss people.  I have been demoted to a walker.  It hurts me to look at it.

All losses are relative.  July was bad before the Bank.  If you have read me before, you know I have left a swath of dead boyfriends and other lovers behind me.  Bobby was one of my favorites.  Once, I was asked in therapy, of all the guys I had been involved with, who would I have liked to marry.  Immediate answer – Bobby! Uh, a small problem, bisexual?  Well, he left me for a man. But… But we went to the same school and bore similar scars; we liked to cook and eat out; we loved to shop; we loved Dylan’s Black Diamond Bay; we walked in Washington Square on warm evenings; we loved to go to the movies and theater. Big missed hint and clue:  We saw American Gigolo three times and we had to get tickets to Bent.  He died of AIDS before his 30th birthday which was July 7.  It’s hard to imagine that he’s been gone longer than he was here.  I wasn’t allowed to go to the funeral as his parents blamed me for his death.  He used to tell me if he ever married me, it would kill his parents.

July 7 also marks the day my childhood friend, Julie died.  Again, way young.  She died around 40.  She was real and funny and loyal. You always knew where you stood with her.  She arranged for her father to take the photos for my first wedding because I hate those forced, frozen, fixed photos.   Her husband had diabetes.  She used to tell him, “Chuckles, I am going to dance on your grave when you die ’cause you didn’t take care of yourself.”  Ovarian cancer.

So, to put it in perspective, what’s the big deal with not being able to walk.  How can I possibly measure not working against not living?  Well, it’s my pity party and no one else is invited.  Mourning is mourning. Respect  for all deaths and departures.  And then?  Then there is summer and its warmth.

Acceptance and Nature – The Child is Father of the Man

Posted on by tresswann

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

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

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

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

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

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

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

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

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

4th July Independence

Posted on by tresswann

The Fourth Of July was not my mother’s holiday.  She grew up in another country. As with Thanksgiving, she would state, “This is not my holiday.  I did not grow up with it, but I will do it for you children..” So, we would have hot dogs and hamburgers and most importantly apple pie.  She would laugh and say the garden knew it was a holiday as it was red, white and blue -hydrangea, roses and daisies.  We’d sit out in the backyard to catch glimpses of the fireworks from the park.  It meant ice cream.  Sometimes, sparklers.  Illegal, illicit glittery sparklers with the other neighborhood children.

As time marched towards adulthood, it became a day to sleep late and not work, followed by the requisite barbecue and pie.

The summer I graduated college I was looking for work.  I went to my local neighborhood dive.  Most of the people there were people I’d been at school with.  I was an introverted nerd who had blossomed in my time away.  I was shocked when a football team jock invited me to spend the 4th with him in Montauk, at another classmate’s house party.  I told him I had to ask my father.  Said father was furious, not that I wanted to away for the holiday with a boy; but rather that I had said I had to ask.  So off we went.  I remember getting  there early in the day.  Just about everyone was from high school and the cool kids no less.  Despite my blossoming, I felt as if I was in a foreign land.  We all grew up drinking.  It was the era.  But these people had started way too early in the day for me.  When it was dark, H the host, suggested that T and I join him and his girlfriend and sleep on his boat.  I don’t do boats.  My grandfather was a ship’s pilot and drowned.  Yes, this was over 50 years later but I had and have an innate antipathy towards boats.  Evening falls and finds us in bed.  Hey, red blooded American twenty somethings! So, lying on my back and thinking of England and see fireworks.  Yes, they’re exploding in the harbor or wherever the hell we are.  I say, “I am seeing fireworks.”  Poor thing took it seriously.  The romance was short-lived.  It was the Son of Sam Summer and that coupled with his fear of spiders cooled things down quickly. The other takeaway was that my high school and forever boyfriend was in California at the time.  Some years later, he returned to NY.  The first phrase out of his mouth was, “What’s this I hear about you sleeping with H on his boat?”  Uh, wrong guy and it’s a truly tiny country.

Next decade(30’s):

“Paris was a place you hide away if you felt you didn’t fit in.”  from  “Every Picture Tells a Story”

I found myself in Paris for July 4 for pret a porter and my job.  I knew I’d get a comp day.  Imagine being paid to do this?  I love Paris and it was not my first trip.  I went all over the city.  My employers had a “rule” that I couldn’t come home without a roll of film.  It was unusually  cold and I wasn’t prepared.  On the Metro, a gentleman thought I was homeless.  One thing, whenever I travel, I note what makes me an American.  If I hear the Star Spangled Banner, it gets to me.  “land of the free; and the home of the brave”

Next decade – the Millennium

I find myself on July 3 starting at a monolith which I call the Bank, in all its omnipotence.  The HR orientation woman tells me, “There is no early leave at the Bank.”  I look at her quizzically as why are they discussing retirement when this is my first day?  She explains that early leave means for the 4th.  This is good because I am already planning my own early leave of staying just a year.  So much for plans.  I end up staying for 15 years through a new marriage, the death of both my parents and the onset of my lack of mobility.  Yesterday was the 18th anniversary.  So much of me was tied up there and still is.

Next decade (40’s)

I am at the Bank.  I have been seeing the man I will marry for about 9 months.  He has a room in a house full of guys.  The owner is a friend of my brother’s.  He has AIDS, which he denies; smokes copious amounts of weed and drinks heavily.  He  is one of the sweetest guys I have ever met.  We barbecue in the backyard.  And of course, we drink.  Everyone laughs as I discover I have drank a whole bottle of rum.  They laugh again as I try to get up the stairs into the house in my dizzy flipflops.  Tom and I sit on the lawn and watch neighborhood fireworks.  I am happy

Same decade(50’s):

We move.  We laugh as our house is close to the police precinct and the display of fireworks emanating from that direction is spectacular.  We sit on the step and move back and forth between the front and the back.  The noise continues till morning.  My reflection is that we are lucky to live in a country where the explosions and the lights are not bombs

Present Day –

It’s hot and steamy.  Normally, this my weather.  Instead, the heat has made me captive in home and body.  The fans spin and the A/C is on.  I look out windows and at security cameras instead of being outside, half dozing, reading in the afternoon heat.  No barbecue, no apple pie, no fireworks of any  kind.  I have been told that currently I am grieving the Bank or more precisely my work there and my life.  A couple of things -it may be illogical but I see not being at the Bank, the beginning of my current decline.  I became complacent.  I didn’t learn enough new things.  Most importantly, I didn’t make a plan.  Even if I had, there was no plan to lose mobility.  Today, for now, I am dependent rather than independent.  However, I still have my mind! So, land of the free, home of the brave.

 

Vice Presidential Aspirations and Disability

Posted on by tresswann

What did you want to be when you grew up? I was about ten and I sent away for career brochures.  I think it was from an insurance company.  I thought lawyer looked interesting and different.  Girls just didn’t become lawyers then.  I also really, really wanted to become an actress.  Also, write books.  My father was a writer so it’s in my DNA.  And I probably couldn’t do it because my father was a writer.  He did tell me before he died that I should write and not let him stop me. It was a gift from him to me.

As I grew, practicality intruded.  I have a facility for language.  I decided to be a multi-lingual secretary.  My mother was a secretary.  She was excellent, well-paid and powerful at times.  I was told in high school that I wasn’t fluent enough;  native speakers would receive precedence; I was that smart that I should have my own security. Reality?  After Hopkins, I applied for a secretarial spot that wanted someone who spoke English, French, Spanish and German, and who studied Latin America and Africa in that order. All checks.  I didn’t get the job because my typing wasn’t fast enough.

Moving on, again with the practicality. OK, if I couldn’t be a multi-lingual secretary, I would major in International Relations at Johns Hopkins and become Henry Kissinger.  Well, that didn’t work.  Economics and I were a nonstarter.  I did attend a job placement interview at Hopkins.  When asked for my aspirations, I said I wanted to wear Vogue clothes.  The counselor was mildly taken aback but assured me with a Hopkins degree I could do anything.  NOT!!  See above for starters.

Attempting to be logical, I determined if I wanted Vogue clothes, I needed to work in clothing.  I had thought  about this in high school but fashion was a trade and I was supposed to be too smart.  And I didn’t draw.  Uh, all work in fashion is not design.  Hopkins?  So, not working.  I was on my second job as assistant office manager in a major construction company when the receptionist turned me on to FIT Continuing Ed.  I was off and running.  Sundays 9- 5 and two nights a week till 9:30 or 10:30.  And I received an A in my art class.  My new ambition?  I was gonna be Calvin Klein.  In later years, I was questioned as to why I always wanted to be men.  Duh, that’s where the power was and is.

I started out as an assistant at Bobbie Brooks.  Why I got the job?  I was the only candidate with personal stationery; I am a Libra and they thought because of Hopkins, I knew psychology.  I decided I wanted to be a merchandiser in my own right.  Five companies later, I did it!  So, then what?  I wanted that VP title but I was just a “girl”.  This “girl” negotiated a licensing agreement with a major French fashion company.  Girls didn’t get to be vice presidents in that company.  The fashion press referred to me as vice president merchandising but not the company. Yes, they  merged with another company and gave my job to a male VP.  I definitely was able to buy and wear Vogue clothes so I did fulfill that ambition.

Back to the drawing board and I started working in financial services from the bottom up.  I had a facility for it.  Who knew that a fashionista could be successful in banking?!  Complications.  I was up for an AVP but was let go.  I came back as a consultant for another 11 years.  Same story – perceived as VP but no title.  I wanted to end my career as a VP.

Unemployed again, over 50, mobility issues, not happening.  In the last three years I have applied and applied.  I  began to realize that I could no longer commute into Manhattan.  If you want to be a VP and a woman on Long Island, you have no life.  I tried anyway.  I was told three years ago to apply for disability.  Me?  I am not disabled.  I just don’t walk well.  I am no longer the woman who wore three inch heels ,carried pocketbook, laptop and projector but disabled?

I finally succumbed last November and applied.  It’s like when I obtained the handicap sticker 5 years ago.  It was a “just in case”.  I thought it was temporary and I would be me in 5 years.  I am worse.  Cane, walker. Everyone said if anyone deserved it, it was me.  I have fought so hard.  I only did it because of economics.  This is a title I do not want.

Last Thursday, I received a letter saying I was medically qualified but the non-medical was still being evaluated.  This makes no sense.  Friday, there is a check in the mail.  I am officially disabled.  It is bittersweet.  The wolf at the door is being held back.  This is not a title I ever aspired to or even wildly imagined. WTF happened!! This was not what I wanted to be when I grew up.  I am coming to terms with the fact that my career life is over.  I am NEVER going to get that title, again, something outside the sphere of possibilities.

It’s reinvention time, Tresswann rising.    What do I want next?  What am I going to do for the rest of my life?  Well, the great Carib-American novel is possible but probably not publishable. I need to walk.  This gives me the opportunity to focus on getting back to walking.  I feel a little lost but I shall regroup.  I did originally want to write so maybe…

What did you want to be when you grew up and what happened along the way?

 

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.

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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!