Only Connect – Howling and Mortality

A long read but somethings I needed to get out.  I read “Howard’s End” my senior year of high school.  “Only connect” was embedded.  Truth be told, it makes more and more sense, the older I get.

Lately, there seems to be a lot of death.  A friend has suggested that it’s our age.  I don’t think that I am that old.  In fact, an “ex-sister-in-law” said at the funeral of one of my exes, that anyone nowadays who dies under the age of 80 is young.

Having this condition makes one focus more on mortality. It becomes even closer.  One of the first things I was told was, ‘you don’t die from it.” Ha, but the complications can kill you. Oh, well.  You become aware of the fleeting nature of time and its quality. And is it the principle of reflection and all around you people start to die?

I guess I could be considered rather stoic.  I barely cried when my parents died.  I gave both their eulogies with dry eyes and an unwavering voice.  I wept when my friends Chris and Scott died.  They were much too young.  They were supposed to outlive me.

I have had three “significant others” die.  My parents didn’t believe in euphemisms.  Dead was dead.  The first was just before we were thirty.  It was AIDS.  I was stunned and furious.  The second was a year or so later, cancer.  Again, stunned.  The last was three years ago, heart attack.  Again, stunned.  I mourned each one of them in my way.  Since they were “ex”, regrets, “Bell Bottom Blues”.

The last few weeks have been filled with death.  The elder brothers of two women I grew up with died.  They were older than me so I didn’t know them but felt the pain of lives ended early. Then a few Sundays ago, I read on the ever important Facebook  that Matt F had died. He is frozen in my mind like this picture. Susan Sontup and Matt Ferber 70's Reunion 2001 Pictures are deceptive.  We were never friends.  He was younger than me.  This was taken at a Classes of the 70’s reunion at the end of the evening.  He was not my date but we had gotten to talking in that buzzy , blurry alcohol way.  He insisted on the picture.  We all ended up at an after party at some bar.  He grew on me.  I decided he was my story.  He wasn’t.  However, he was so vital and so much fun.  I was just stunned to find out he was gone, way, way too young. I reeled  I understand the turnout for the wake was huge. The time between the picture and death was negligible.  At a dinner the night before the reunion, Joey K looked around and said, “We are in the last third of our life now.  We need to make it worthwhile.”  Huh?  Speak for yourself.  I was so not there.  Now I get it.  I am staring down the barrel of my mortality.

Next death.  This one occurred earlier and reaches farther back.  I didn’t find out till months after, just in the last month.  I knew Judy as a child.  We were in day camp together.  She was a very pretty, sweet child with pale blond hair and huge, dark blue eyes. As we aged, I was in the advanced class and she wasn’t.  Somehow, we stayed friends.  I can remember cutting high school with her and taking the bus to the mall.  It was there she told me about the truant officer.  I had always cut school.  It bored me and I was bullied but I had always just gone home.  Those days set the pattern for the rest of my life.  If I didn’t like something, someone I walked it out and away.  It frustrates me that I can no longer do that.  Judy had a job after school in a grocery store.  She tried to get me in.  No one ever wanted to hire me.  I was a hard sell, even then.  I am very much my own person in terms of style and opinion.  Senior prom approached.  In the way that teenagers just know things, I realized my first week of high school that senior prom was not going to happen for me.  Judy met Joe at the grocery store.  He was older than us and already out of school. They suggested I go to prom with them.  It’s not like today where you can go stag or with a group of friends.  My parents and uncle volunteered to fly my cousin up to accompany me.  I voted no.  Shortly thereafter, scandal swept the school as Judy married Joe before graduation. Again, in those days you could not be married and be in school.  It was only two weeks prior to graduation so the assumption was that she was pregnant.  In later years, when it came up, I would always remark, “That’s why the baby was born more than two years later.”  Judy and Joe came by my parents in early summer.  My mother remarked, “How nice of Judy to bring her handicapped brother.”  They were simple souls.  Joe died this January after 46 years of marriage.  I cannot even begin to imagine that void.

Only connect.  Judy and Joe could not have another child.  They tried to adopt but were told they could not.  The story goes that they were denied because of their limited capacity.  My best friend’s mother knew Judy as she grew up behind my friend’s home.  She was angry as she said that Judy and Joe had so much love to give and why deny a child love?  S and I were firm friends from 9th grade.  It started as one of those intense teenage girl friendships. The Thursday after Matt died, I received a text from S that her sister, J was dying and not expected to live. I sat at the dining room table and sobbed and  howled.  S had older sisters.  J was 9 years older than us  and was in the Airforce. She was stationed in Orlando where Disney World had just opened up.  J took a part time job there which entitled  her to reduced admission.  She invited S and then me to join her for spring break!  In Florida! With Disney World! In retrospect, this was insanity.  It became one of the seminal trips of my life.  There were many life  lessons learned. We were very excited and as our mothers had to remind us, Florida was still part of the United States so we did not have to pack every single thing we owned.   Somehow, our flight changed from direct to a changeover in Atlanta.  The travel agent thought it was a good idea.  Really?  Neophyte  girl travelers switching planes.  We did fly first class. I had not flown since I was a baby.  S had never flown.  We were told to make sure our luggage transferred.  Indeed, we saw the blue (hers) and the red(mine) being wheeled across the airport.  We were two shy, sheltered girls.  We found the airline for the connection at the far end of the terminal.  It was a trailer which set off a fit of giggles. More giggles when a boy our age asked, “Dad, should we call the flight now?”  It was a puddle jumper.  S had an ear infection but had been  cleared to fly jets, not puddle jumpers.  First life lesson learned – if something can be timed, it can be endured.  I have used this one so many times.  Surprisingly enough, not for MRIs which I tend to sleep through but I do advise it.  On the flip side, this disease/condition cannot be measured so…

Despite seeing our two bags toddle off, they did not arrive with us.  This created a problem as J and I were larger than S.  Remember teenage girls?  This appeared to be catastrophic.  Second lesson learned – always have one change of clothes and a nighty in your carry on luggage,  Again, a lesson that has served me well over time.  Eventually, I was able to do business trips that way.  I did an overnight to Chicago once with  just a briefcase.

Our vacation was Easter week and the next day was Good Friday.  J had one more day of work. Because S had nothing to wear we did not walk outside.  The air was warm and scented with oranges.  We wanted to tan and walk. Teenage girls have to have “the” outfit.  We stayed in awaiting the luggage.  We did have a look round to see if there was any way we could cannibalize J’s clothing.  No luck.  But what we did find was her boyfriend’s underwear.  It is important to note that this was 1972 and living with was not a norm, especially for an intensely Catholic family. Lesson learned :  Everyone has private lives that no matter how close you think are, are theirs.

Unfortunately, that was not the end of our lessons for the day.  I was already beginning to believe this one though being a teenage girl clouded it a bit.  Lesson learned:  Everything happens for a reason.  In later years, my mother said that this was one of two phrases that would be engraved on my tombstone.  On that Good Friday, an horrific plane crash occurred, yards from J’s house.  (Good Friday B52 Crash ).  We would have been outside had our clothing arrived.  J saw the plane appear to crash on her house, with her baby sister and friend inside.  Many, many tears.  Until well into my twenties, I shook any time a plane flew low.  Because of that, I cannot even begin to imagine the trauma suffered by the 9/11 downtown survivors. However, as I write this today, the Blue Angels are in town for an airshow and every time they fly over the house I tense, nearly 50 years later.  Cars kept us awake all night long, driving and gawking by the crash site.  Lesson :  People feed on others sorrow.In retrospect, J was incredible.  Despite the death of her friends, she gave us the best time.  Last lesson for that trip:  A good haircut changes everything.  J took us for our first adult haircuts – ducklings to swans.  I used to reflect on how brave she was but as she was passing from this earth, I had to acknowledge the profound effect she has had and will continue to have on my life.

As I have been reflecting and writing this, someone else from my childhood has died.  It appears I am living in an epidemic of death.  A was younger than I. We belonged to the same arty, hippie circles.  There is a picture in the yearbook of Students for Peace.  We are both in it.  People look at the picture and frequently mistake her for me.  It’s a bit eerie, especially now. Once again, I howled and sobbed.

Only connect.  Again, the ever present Facebook.  Synchronicity.  Someone posted about the ’50’s classes in my high school.  A fellow replied that his father taught English then and later.  Right, the teacher who taught “Howard’s End”.  Only connect.

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?

 

Out of Work Summers – Beach and Bleach

I am writing this from my laptop in the backyard.  I am sitting in what we call our screen house so I am protected from the sun.  There is a delightful breeze.  I have been unemployed for 9 months; second longest period so far.

In periods past, I would be just returning from the beach.  Due to this condition that has been closed to me for now.  I can no longer tolerate the heat nor can I walk on the beach.  I used to find solace, peace and joy at the beach especially when I was out of work.

I started my unemployment  career in the garment district.  I went in and out.  Then I ended up at a major company and wa there for almost 9 years.  I loved what I did and was excellent at it.  The 90’s happened as did a merger.  I was treated in a textbook/case study manner.  I stopped getting invited to meetings.  My work was taken away from me.  I was let go with severance.  It was the end of May.  All my associates were let go after me.  I was grateful for this as it angered me and I would have been fired.  They let go a woman who had been there for almost 20 years.  She was paid less than what I used to expense for lunch and dinners weekly.  Ah, that expense account.  For nearly 10 more years, I didn’t make as much as my expense account.  I’d clear out my files and cry as I shredded the expense stubs that were larger than my current pay stubs.

When I lost that job (and I hate that term, I didn’t lose it, it was taken away from me) I was depleted.  I headed to the beach and spent so much time there my naturally dark hair bleached.  I also decided that I was going into business for myself.  I wanted a company that would never treat people like my low paid friend that way.  I have a great sense of what  is going to be popular fashion-wise and I had made connections literally all over the world.  I reached out to my network and received enormous support. What can I say? Great idea.  Wrong time.  Poor capitalization.  I showed merchandise to Brooks Brothers and was told it was too forward; try Paul Stuart. I had an existing relationship with Paul Stuart and was told it was too conservative; try Brooks Brothers.

I became seriously depressed and got married.  Bad, bad choice.  It was not convenient.  I made more money on unemployment than he did working.

I fought my way out and up and ended up part time at a financial services firm.  I was over a thousand hours and forced  to take nine weeks unpaid leave.  It was summer.  I hit the beach and the want ads.  Again, I bleached out.  I had an interview with a company that wanted someone who could do what had been done for my fashion employer.  Uh, that was me.  I came up with a portfolio of designs to show them, arguing the whole time with the late Joebe who wanted to impose his personal taste on the process.  I arrived at the interview deeply tanned from my beach time.  The interviewer took one look at me and said “Obviously, you are not seriously interested in working.”  He wouldn’t even look at the hours of work I had put in.

Fast forward, that  company made me permanent but I left after almost 7 years for the monolithic Bank. Finally, after 10 years was making a little bit more than those old expense account checks.   After 4 years, I was let go.  Back to the beach and back to bleaching out again.  And I married, again!  But this time I knew I would be working in the fall. It was a dream job at a major retailer making more than I had.  I also started moonlighting at the Bank.  What could go wrong?  Chapter 11 at the end of May.  For the 2nd time in two years, I was off for the summer.  Yup, beach and bleach.

Except for the first time at the end, I  was optimistic.  I had ideas and possibilities.

This time, I was let go in the fall after a total of 15 years.  I didn’t have the same hurt I had had with fashion.  My associations were different.  I was optimistic and calm.  I didn’t want to do my own business as I had done previously but actively look for work.

What’s different?  The Internet and my scads of experience.  Even if I was able, no beach and bleach for me.   I spend hours daily sometimes including the weekends looking for a job.  Today is one of the only days I am taking a “break” and writing.  What’s also different this time is that I am getting really good interviews.  What’s the problem?  Well, I am mature.  Experience costs money.  “We want you do but with someone out of college.”  Good luck to ya on that.  Didn’t you hear “You get what you pay for.”  And then, the elephant in the room.  My mobility.  There is nothing wrong with my brain.  I participate in research studies and I can remember the answers I missed the previous year!

It’s summer.  I HATE this condition.  It is taking so much away from me:  no beach and bleach, no walking, no gardening, no JOB!!  I need to channel that sense of optimism and possibility again.  I need to recharge without the beach.

 

June/July 2016 Check In

goofed.  I started this in the first few days of June and then stopped.  I have been blue, angry and pre-occupied.  It should be easier not working to be timely and thorough but somehow it’s not.  I am looking for the spark and the peace that seem to have disappeared.

Wow, I was checking my records and saw that last year I was interviewing and bombing out. too!

How did I feel this past Month?

Still blue.  There was no activity at all job wise.  This is depressing .  I also feel my health deteriorating.  I am not sure if this is a symptom.   The WEDDING  looms.  My stepson is getting married and it’s just going to be ugly on all kinds of levels.  And I continued to be blue through June also although jobs picked up.  I interviewed at three companies in two days and came up empty.  I was reminded I have a major reunion coming up next year.  I want to be able to walk and don’t see that happening.  My friends are retiring and/or having grandchildren so I am fighting regrets.

What did you do for yourself this month?

In May, I  did attend a professional association event.  I was surprised that I liked it.  Goes to show that sometimes you have to let go of assumptions. I also realized  that I had let part of my life go.  I have been  isolated.  I did sign up for two events back to back in June and then didn’t go.  The first one was for a cocktail party at a professional association. It was at a golf club.  The last time I was there was over 20 years ago in a blizzard.  The late Joebe had a DUI conviction and was finishing community service there. It’s beautiful, wooded and slightly hilly.  It was not fun driving his Camarro.   At the last moment last month, T decided to come with me and sit in the car as he thought due to said hilliness, I might need assistance getting in.  It was a beautiful evening with bad directions.  When we finally found the clubhouse there was only valet parking or far parking. I  would have been shot by the time I walked in so we left.  The next night was another professional event but I wimped out as it was rush hour and the Long Island Expressway.  I grew up with parents who had a terror of the expressway.  I have been working through  it but not at my strongest.

Trying to get back in touch with my creativity but feel too cluttered.

What did I eat this month  and how did it make me feel

Still doing my Smoothies.  Cheating a bit on good eating but getting back into it.  When I eat well, I feel well.  When I am blue it just falls apart.

Did I exercise?  What did I do?  How did it feel

The gym has become my new happy place.  However due to blistering in my two day three company interview marathon, I am hurt and can’t wear shoes.  I lost the gym for over 10 days.  I went two days and reinjured my foot.  I am weaker.  It’s a vicious cycle.

For whom or what are you grateful?  What matters most in life?

I am grateful that I am still hobbling along.  I am grateful that despite not working the mortgage is paid and we can eat.  My stepsons came through for me in an awesome way with the blisters.  I am told and shown, I am loved.

Do I have a higher purpose or driving force in my life?   Make a mission statement

No mission statement as usual.  I’ll co opt what I tell my little “elves”- spread joy, do good.

Conventional medicine  Still just Ampyra and Baclufen. I am looking forward to Opera in the fall.  I have just been told about Colostrum and am thinking about giving it a whirl.

Symptoms – Ah, the Raynaoud’s.  The doctor was quackery so I am just coping on my own. Getting weaker in my hands.  My balance may be getting minimally better.

What symptoms are most troublesome  – Independence and mobility.  Hands not working

Do I blame myself for things – Yes, I am still believing it’s food, stress and exercise.

How is stress level?  Very bad.  I think I have reached my limit.  Not working is impacting me on all levels.  I have an enormous amount of anger which I don’t like.

What can I do tomorrow to make it better than today?

Think I am going to get a “tune up” with a therapist.  Amp up the physical therapy, exercise and right eating.

Red Shoes, Blisters, Mom

I am fascinated by shoes, especially since I have mobility issues and can’t  wear what I want.  Now I do have my fashion fetishes  though shoes are not one.  That was my mother’s.  She thought of herself as an Imelda Marcos of shoes.  Couldn’t walk past a shoe department.  If I had anything, it was probably the irresistible lure of flip flops.  Still, certain shoes have marked certain times in my life.

I hate now that I have to wear flat, primarily oxford shoes.  My goal is not to look orthopedic or old.  This winter I bought a nice pair of metallic  slip ons at Clark’s.  Normally, this might be a Sunday afternoon jeans kind of shoe but it’s my alternative to my shiny black male bankers shoes.  It’s been comfortable in the winter.

Another factoid about me.  I like to go shoeless and barefoot.  Years ago, I worked for a man who said, “Sweetie, I pay you enough to wear shoes.”  I was known for being in meetings and taking them off.  I used to have really tough feet too due to going barefoot all the time.  The one place I really perspire is through my feet.  So, I never wear hose with shoes, if I wear shoes when it’s warm.  Things have changed and I cannot leave the house without the spectral leg and hence the ugly shoes.

I had interviews with three companies over two days in NYC this week.  In the past, these would have been in great locations and all walkable.  And it was in the 80’s.  Technically, according to my doctor, I am not supposed to be in NYC in that kind of heat.  On Monday, I had to walk 2 blocks and a bit to my 2nd interview.  Caught a cab back to Penn but walked a little further than normal.  I had the beginnings of a blister, the Clarks with no hose.

The other thing that has been happening with this new spectral leg is that the bottom of my foot burns.  It feels as if it’s on fire.  I can’t take the shoes off by myself.  Well, actually I can take them off, just can’t put them back on.  This adds to the irritation as I try and wiggle them around.

Back for the second round on Tuesday.  I don’t want to look too formal but because it’s an interview I can’t wear the gladiator sandals that work with the spectral leg.  Back into the Clarks with bandages.  By the time I get off the train I realize this is not working.  Ever resourceful, I try to shove lidocaine cream and tissues into the shoe.  I have long nails so this isn’t primo either.

The interview is on Broadway, literally a block and a bit from Penn.  However, I don’t want to arrive staggering.  Due to blister I miss the bus and have to stand out in the hot sun for 8 (I counted) minutes.  So, when I take the bus one stop and have to cross the street, it’s not going well.  I then interview with two different people on two different floors. What do I do in the waiting room?  I lust after the other people’s shoes. I see someone with red -soled Louboutin’s.   A beautiful  flat  strippy  sandal.

There is no bus the other way and it takes me almost 40 minutes to walk the block back.  A businessman on 32nd Street asked me if I needed help and when I said “no, one step at a time”, he told me I was still pretty.  Being vain, that brought a smile to my face.  However, by the time I started to cross 7th avenue, I needed help.  An homeless veteran helped me the last few feet and one of the sightseeing bus hawkers helped me to the escalator.  I missed my train but continued to stagger through Penn.  Walk ten steps, rest 30 seconds.  I made it to the wall of the police substation.  They noticed and an officer let me sit on the bench inside.  It helped enormously.  Staggered to the train and then down the two flights of concrete stairs to the car.  I did not cry.  Just kept powering through.  Tom nearly cried when I got in the door and took off my shoe.  He wouldn’t even let me get off the chair for an hour.

My foot is a swollen, infected mess.  I did well on the interviews despite that.

This brings me to a memory.  I lived almost two miles from high school and I hated it.  I did  frequently what I am known to do.  I walk away.  Well, now I really can’t but voting with my feet is the way I have handled my life.  So, I used to literally just walk out of school.  Sometimes, I’d go back.  I was also brought up to be my own person and not go with the crowd.  But high school is still high school.  I bought a pair of red suede baby huey shoes for $3 at Thom McCann.  This was huge.  My allowance at the time might have been $1 a week.  I am also my grandmother’s child.  She was a precursor of the “It’s better to look good than to feel good” school of thinking.  So, I wore my hard as rock red suede shoes with a fine wale lavender corduroy pant and lavender Missoniesque body suit to school.  Decided I didn’t want to be there and left.  Halfway home I felt hurt.  Pre-cellphone plus I was cutting school.  Arrived home and my gran and dad were horrified (Ma was at work).  The hems of my lavender pants were red and matched my shoes.  Not only had I burst blisters but had gone almost to the bone..  I literally couldn’t go to school for three days.

Which brings me to me and Ma.  She always told me she had a high tolerance for pain.  She said childbirth  was vastly overrated.  She used to have her teeth drilled without Novocain.   And the implication always was that I couldn’t.  Yet, look what I have done even going back that far.  I just sucked it up and kept on going.  I do deal with pain and uncertainty.  I need to acknowledge I am brave.  I keep on going and ignore the inconvenient.

On the down side, I was practically in tears going to Penn this week.  I used to walk to midtown in a third of the time it took me to walk one block.  I HATED looking and acting like the fragile elderly.  I REFUSE!

Sliding on a Sunday Morning and Reflecting

t’s a slightly dreary Sunday, rainy.  We usually sleep till  around 7:30 a.am.  Tom got up at 6 to go to the bathroom, triggering the same in me.  I tried to getup but couldn’t sit up.  I need to pull myself sometimes with sheets.  I asked Tom to give me a push up.  No problem.  Then when  I tried to get out of bed instead of standing, I slid gracefully to the floor.  This is usually not a problem.  I  stand up like a toddler.  I grabbed the edge of the bed.  Not happening.  Tom wanted to help.  Sometimes, when I need to get out of the tub at night, he has to come in and help me bend my right leg so I can stand up.  “I need you to do the same thing as you do in the bath.”  He comes over, pulls my leg up and as soon as I try to pull the other one, the right collapses down.  We do it again and this time it jumps uncontrollably and collapses again.  One more time and the leg is jumping up and down even worse.  The first time this happened was in my neurologist office.  I swore at the time it was something he had done to me.  It happens periodically when I get dressed in the morning.  I usually just put my hand on it and stop it.  Tom says, “Isn’t this why you take the Baclufen?”  No, that’s for the spastic thing I do where my body tenses up and I walk like a Zombie.  It’s been happening more the last few days.  Nerves, I thought.  So, Tom pulls my right leg up again and it’s out of control and he has to press it to stop it.  Think of a tuning fork.

He has to walk me to the bathroom.  It’s only 10 -12 feet.  My issue becomes that sometimes in the morning I have problems getting up in the bathroom.  I don’t want another set of grab bars.  It’s insidious defeat.  Every once in a while which is mortifying I have to ask Tom for help.  This morning we anticipate the worst.

Now, I have to call out to my fellow blogger BBH with MS ’cause she discusses bathroom issues frankly.  Let me describe my situation this way: It’s like I can turn on the faucet and most times I can turn it off but sometimes I can’t tell if the tank is empty.  It pours out of me, that I feel, and then it just keeps on dribbling and dribbling.  Mind you when this started this morning, I was in a cozy sleep.  We had just changed the sheets to the high thread count Egyptian cotton.  It’s like sleeping in a lovely cocoon.  Well, that’s done. Luckily, I can stand up by myself in the bathroom.   Tom helps me get back into bed.  My right leg feels totally numb.  And this is the moment he decides to be amorous!  Are all men adolescent boys?  The only thing I want is to get feeling back in my leg and salvage some sleep.

Which brings me to reflection which may have brought on this whole spell.   Yesterday, I opened Facebook and it let me know I had a memory.  Did we remember before Facebook?  I had posted a picture of Jeremy’s college graduation picture with us five years ago.

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So, a couple of things:  I am relatively tiny in this picture.  I always think of myself as tall and huge.  The next thing that hit me is that this was on a grass field.  We returned early from our vacation to attend.  I had walked on the beach and felt normal.  It was a glorious moment.  Yes, it took me a bit longer to reach our seats on the grass at the graduation but I was walking without a cane and without the spectral leg.  Again, the deterioration has been insidious.  I am told I really haven’t deteriorated.  REALLY?  Ok, so I am grateful that I still can get around but this is so far from alright.  It is not alright!!!   Back to fighting and clawing back, one step at a time.

The Rheumatologist

Since this journey started almost 8 years ago, I have been looking for a good rheumatologist.  Actually, I did have one.  She was originally my mother’s.   It upset me that I had started down this path.  This was in the early days when I was still looking for a diagnosis.  She tested me for everything.  I tested positive for everything.  Well, Sjogren’s, Lupus, rheumatoid arthritis for starters.  I cried.  She hugged.  She told me I was asymptomatic.  Also, it wasn’t unusual.  She said that one disease could open the door for others.  Not to worry, I wasn’t considered progressive.  Three visits in, she retired  and moved to North Carolina.

Move forward almost a year.  I really thought I  needed a rheumatologist.  I am known for my smile.  Inside my lips started to hurt.  I could no longer smile.  Lipstick hurt.  I am also a makeup kinda woman.  My neurologist told me not to take hot baths, my favorite form of relaxation.  My ability to walk was fading.  I felt everything I loved was disappearing and being diminished for me.  At this time my mother also seemed to be deteriorating.

I went to the “replacement” rheumatologist.  First, he looked like he was 12.  Being a Hopkins (non-premed) graduate, I understand the importance of newly minted doctors.  I also understand that after a certain age everyone looks 12. But… he walked in with a laptop and I kid you not, surfed the Net  with my symptoms.  He gave me 5 possibilities – lupus, menopause, herpes, stress and something I forget.   Left in a hurry.  The symptoms had been easing anyhow.  A couple of days later I found  out my mother was dying – flare-up!  It was stress.

Next,  I contacted a roomie from college.  I said I went to Hopkins.  I went to school with a sh*load of doctors.  I see her every five years or so at homecoming.  She became head of rheumatology at a teaching hospital in NC.  I call her office and leave a message that I’d just like a referral, just a referral.  Still waiting…

Even my neurologist has said for the last few years I need a rheumatologist.  I have a friend who is also host to myriad autoimmune eruptions, disruptions and events.  In December, she looked at my right hand which unbeknownst to me was purple and beyond cold.  She warmed it up and announced you have Raynaud’s.

I am taking my usual happy hot bath one night in winter.  My extremities are always cold and always have been.  I wear socks to bed most of the year.  Over the past few years my feet have been getting worse but they warm right up in the bath.  So, I get into the bath and notice my hands are freezing and they are not white, red or purple but sort of dead looking, an  awful non-color.  I plunge them in the bath and swirl around and nothing.  They do not change! It must have been 5 minutes or more before color came back and they stopped hurting.

Fingers started changing color more frequently, especially my middle left hand finger.  Then at the end of March I stood up at the table with Tom right next to me and did a bizarre collapse and fall.  I really hurt my left pinky.  Tom made me a splint with a meat skewer.IMG_0919  I went in for research study and MRIs.  The doctors were much taken with his work.  My middle and ring finger started to go dead several times a day!  By the time I went to my neurologist, Tom had perfected the splint with a smartphone stylus replacing the skewer.  She says next time I fall like that I need to go to urgent care and uh, you have Raynaud’s.

This brings us to today.  I asked my autoimmune friend for her rheumatologist who also practices alternate medicine.  He is not covered under my health insurance.  No surprise on that one.  But I believe there are certain things you don’t skimp on.  Last year, my neurologist wasn’t covered under my insurance.  This year, she is free!  This guy is several hundred dollars.  He sends me a thorough and complex questionnaire on line.  I literally  complete 28 pages of questions!  I appreciate this as my handwriting has always been awful and lately my hands don’t work well all the time.  We get there today and I have to fill out another sheaf of papers.  They explain their systems don’t always cooperate.  No waiting and the nurse walks me back.  She weighs me and says “You’re tiny!”   High point of the visit.  The last time anyone said that was my other college roommate after not seeing me for 30 years.

I have on the spectral leg and my cane aka walking stick.  Doctor walks in with laptop.  Tom flashes back but then sees he is using it to pull up records and take notes.  He asks questions and asks about blood work.  I don’t have any recent.  I  say I am here because my neurologist and friend say I have Raynaud’s.  He squeezes my hand and says my self-diagnosis is correct.  He doesn’t look at my feet. Nothing.  I need blood work to see if anything else may be going on.  I tell him that one of the reasons I chose him was that I understood he also practiced alternate medicine.  He does and goes into an explanation of auricular medicine.  Tom practically starts to levitate.  We grew up differently.  I have to be near death to take an Advil.  He is one of 5 children and any drug is a good drug.  Herbs are not doing it for him. Doctor says ‘Oh, you don’t like going to doctors?”  That is not my issue.  I go to the neurologist, gynecologist and eye doctor regularly.  I explain about Hopkins and how I saw them in their formative years so, I can be wary.   I get the scrip for the bloods, say goodbye and then doctor asks why I am using a cane?  Cripes, I had to be helped onto the scale. We had discussed the MS diagnosis earlier in my 10 -15 minute visit.

Back to the drawing board,  I need a rheumatologist.