Disability

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!

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?

 

Frankie, the Spectral Leg and other thoughts

Posted on by tresswann

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

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

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

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

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

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

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

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

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

Heidi, the Super Bowl, Secret Garden, Pollyanna and Me

Posted on by tresswann

The SuperBowl has been on my mind as it has recently passed.  My family weren’t football fans but totally baseball mad.  Tom watched it in full for the first time in decades.  Anyway, my mind was just drifting along and I remembered “Heidi loves the Super Bowl”.  Yes, you have to be of a certain age to remember and appreciate that bumper/sticker joke.  I was one of the children breathlessly awaiting the broadcast of Heidi.  I don’t recall the exact details as I was a child and football not a religion practiced in my home, but it was at some critical juncture in the game, that the network cut over to Heidi. It must have been around 7 o’clock and of course, on a Sunday evening I was one of those children who adored Heidi.  It was one of my favorite childhood books.  I would not have been allowed to stay up late on a school night.

Heidi

Heidi’s story, as filtered through memory – Heidi is a miserable child and sent to live with her grumpy, mean Grandfather in the Alps.  He forces her to go outside, play,  herd goats and get apples in her cheeks.  Somehow, she encounters Klara, a young sick girl, who reading between the lines, is not expected to last long.  Klara can’t walk either.  Heidi enlists Grandfather to do for Klara what he has done for her.  She drinks  goat milk from the herd. And with exercise, good air and clean food, Klara is cured and can walk.  More or less.  It’s been decades.  I  shall have to gimp upstairs to my childhood shelf and have a read.

secret garden

One of my other favorite books as a child and yes, just a plain favorite is The Secret Garden.  Again, the condensed via me version:  Mary is a miserable, spoiled brat baby and sickly.  She is sent to live with her uncle in England.  Again good air, good food and a new friend lead to a change in her.  She discovers her cousin Colin hidden away – bedridden, can’t walk, not expected to live.  Good air and food plus exercise and he walks again.

My parents used to tease and call me Pollyanna  or Rebecca of Sunnybrook Farm.  No recollection  of Rebecca but a memory of the film Pollyanna with Hayley Mills.  I did want to be Hayley Mills.  My recollection is that Pollyanna is a positive child, gets ill, loses her ability to walk; in this case she doesn’t get to walk again but everyone loves her more.  No memory of Rebecca except that she was cheery.

So, where is this leading?  I have been steadily deteriorating over the last few months.  I have attributed this to bad eating and lack of activity.  The last week has been particularly brutal.  My doctors have pooh-poohed me.  It’s the nature of the disease.  It’s supposed to progress and it is.  There is no cure at this time and it is inevitable.  From day one, I have never bought into that.  I do believe that food and notjust “eat healthy” impacts walking.  Not walking and being as active as I used to be takes its toll.  It’s a vicious cycle – less activity, more fatigue, more stress, less activity….   Eating needs to be tweaked and healthy is relative.  I am still sorting it out,  But do not, do not tell a woman who has metabolized Heidi and The Secret Garden into her DNA that she will not walk again and wheelchairs and scooters are inevitable.  Obviously, you have not read what I did as a child.

Here’s to Colin, Klara and me, perpetually Pollyanna and proud of it.