Anniversaries and Losses

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

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

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

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?

 

Ocrevus 2nd Round, Yukons and Skinny

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

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?

 

Frankie, the Spectral Leg and other thoughts

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

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

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

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

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

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

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

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

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