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.

Musings on the NP Visit, UTIs, Pain and the Perfect Storm

Male discretion advised – details of my visit to my ob/gyn Nurse Practitioner disclosed.  No salacious details.

I have been seeing my nurse practitioner for around 20 years.  I was brought up to believe having these exams were responsible, important and natural.  One year, when I was out of work without health insurance and no money, my parents gave me my annual exam as a birthday present.

For me, the two worst parts of the exam were being weighed and the Pap smear.  I had a botched one once and bled for days.

I have followed R from her original practice to a newer one.  In this practice, she only sees patients one Saturday a month.  She has seen my  deterioration.  I don’t focus on it and have a tendency to actually forget I am less able.

I wake up Saturday morning with burning pee.  Good thing I am going to the doctor.  I ask my husband to remind me to tell them I need a test if I rush in and need to use the bathroom.  I use the walker because it will make life easier.

I tell the nurse I think I have a UTI.  No problem, we’ll get a sample.  The exam room is so small we have issues maneuvering the walker.  She leaves me with the cup and walks out.  The bathroom is not handicap friendly.  I cannot believe this as it is an ob/gyn practice and what about the big pregnant ladies?  I then go through a series of contortions to sit, hold the cup and collect the specimen without falling, dousing myself with urine, or dropping the precious sample.  Whew.  Mission accomplished.  Next removing everything including spectral leg.  Easy-peasy.  Uh oh, I forgot getting up on the table.  Problem, the step attached to the table moves. It slides in and out.  This is not happening.  Now, another thing my mother did for me is that I don’t have nudity/body issues in medical settings.  I find the whole gown thing on the annoying side.  My husband has explained to me that I must be aware of others discomfort.  Point taken.  R comes in and I show her the situation.  She wants to call for help.  I explain if we hold the step stable and maybe give my leg a boost, it will work.  Well, we did it but now she wants to add another gown for my modesty.  The good news is that I have aged out of the Pap smear.  I can’t begin to imagine how that would have worked.  She does a dip on the specimen and says you definitely have an infection.  Do you want antibiotics now or do you want to wait 48 hours so we know exactly?  NO! DRUGS NOW!  She phones it in and high fives me as I leave as we didn’t do the weighing thing and I tell her my vastly reduced weight.  I am almost 50 pounds lighter than when we first met.  I inspired people after dropping the first twenty.  I don’t really mind that kind of inspiring as opposed to the disease inspiring.

We stop to go grocery shopping on the way home.  Pharmacy is only a mile or so from the store so we ring and it will be ready in half an hour.  Fine, go home, unpack groceries, check email.  Ok, let’s go.  I try to stand up from desk and can’t straighten up and am in such excruciating pain that I scream.  Tom comes running in.  No, I have not fallen.  It’s my back.  Get me two Advil.  I creep out to the front room.  I have a very tiny house so we are talking less than 20 feet.  I sit down.  I try to stand and scream again.  My vision is going black and I am seeing stars.  Tom’s reaction?  I had a sledge hammer fall on my hand and didn’t scream.  My reaction?  If I had the f*ng sledge hammer right now, we’d see about that.

There is no way I can drive to pick up the ‘scrip.  Tom has no license.  “how come this is happening to you? You were fine this morning.”  Actually, my left leg which is the allegedly “good” one was really wobbly.  Next, as I am thinking how I can get the meds, and not move, and not cry, he announces his cellphone is broken. I tell him to charge it. It doesn’t work.  “We’ll have to go to Apple.”  Are you f*ing insane?  I am in excruciating pain, can’t get meds and you want Apple?  I text my stepson who was supposed to be away for the weekend.  Luckily, he’s home and says no problem I’ll pick up and be there within the hour. Dad gets on the phone and tells him his phone doesn’t work.  Kid laughs and says he’ll make an appointment.

I am blessed with my stepsons.  He calls from the pharmacy to confirm my birth day.  I ask him if needs the year and the pharmacist laughs.  This is good.  The kids know that I am older than their Dad but not by how much.

I can’t take the meds till evening.

I had Vicodin once for oral surgery.  Everyone laughed as I had to use them at work, and taught a class that usually gave me a headache.  I did a great class.  There were leftovers so I saved for a rainy day.  Tom had an operation afterwards and ran out.  He was supposed to replace mine.  He didn’t.  There were no painkillers in the house.  I took an extra Baclofen.  I am resourceful.  One of the kid’s friends smokes lots of weed.  He was ecstatic some years back when he went into a cabinet for a glass and found a baggy of catnip.  “Mr. and Mrs H…””Hate   to disappoint, it’s just catnip.”  Eventually, we told him he couldn’t visit us if he was stoned,  I am thinking of Meghan Llewellyn(@BBHwithMS) and her recent journeys with cannabis.  Two thoughts, if she has been dealing with pain like this, is cannabis enough?  And, was what was happening to me associated with my condition? I’ll do anything to ease this.  However, step was supposed to go out of state with his friend, so no relief there.  The last time I touched weed was in 1994, Good Friday.  Before that, 1980!  I only used it when I was drunk.  Bad combo as I don’t come off the ceiling for days.

My mother had a high tolerance for pain – childbirth was overrated, teeth drilled without Novocain.  I so do not take after her.  The pain gets worse.  I do remember stepson gave me acupuncture cushion.  A little relief.

I take the meds and it also begins to ease a little.  However, I cannot lift my left knee or bend it.  I am scuttling around the house sideways.  I can’t step over the saddles.  Tom has to help me into our  high profile bed.   I get up in the middle of the night and have rolled over.  Crisis averted.

So, this condition has seeped into my life.  And everything is not MS.  Sometimes an infection is just an infection.  Of course, the aftermath is worse.  Losing exercise is harder to regain.

It’s amazing how much we take for granted and how much something as simple as bending a knee means.  It’s a couple of days later and I am still a tad twingey but I can move my knee; I can stand up.

What happened?  I think it was the perfect storm of adjusting to the new Frankenstein spectral leg and the UTI, all exacerbated by my condition.

Plan?  I need to have access to MMJ!

A Third Spectral Leg and Other Woes

I hate the idea of a brace, appliance, AFO or whatever you want to call it.  So, I have always called it the Spectral Leg.

I had my first one fitted after a visit to an orthopedist.    SeeDoctor Visit, the Spectral Leg and the Motivation of Ugly

So, I finally made the appointment to be fitted with the new ugly.

I commuted for years into NYC and took the same trains.  You recognize the people after awhile.  Around the time, a couple years back when I knew I was going to lose my job, a man came up to me on the train platform and said he had been looking for me.  “You’re the woman with foot drip, right?”  He told me he used something called a WalkAid that I could be fitted for not far from my home.  We looked it up and it appeared to be similar to the Bioness which we had “discovered” a year or so before. When I had asked my doctor about it, she had told me my existing brace was working and it would do pretty much the same.

Well, the place I had to go for my fitting was the same place for the WalkAid.  We were determined to inquire about it.

My second one has always hurt me.  It has caused my foot to burn and I actually get blood blisters on the ball of my foot from it.  Originally I was told it was in my mind or a nerve thing.  Most recently, I was told that my nerves made it worse.  The last doctor didn’t address it at all as he was replacing it.

The fitter asked about what the doctor wanted as he usually writes something more detailed than was provided.  He also asked who had prescribed my current one and how.  My neurologist wrote it as I wanted something less obtrusive and one that would give me better shoe selection.

He looked at it and the way I walked.  By the way, I made my fifth public appearance with a walker.  The brace has hurt me, not only in terms of the physical pain but also because of its design.  It has hurt my walking.  The first one extended to just before the ball of my foot; this one to my entire foot.  Apparently, this has not allowed my foot to work properly which is why I find myself walking so peculiarly.  My knee and hip are more messed up.

Options?  Well, the to the hip one that the doctor knew I wouldn’t wear and thought might be too heavy for me. One that’s like the first but halfway up the ball of my foot – limited shoes and it won’t help the knee problem.   And then a massive ugly one, front, back and sides.  Oh, I do have a choice of white or black and I can have purple butterflies.  I am a woman of a certain age so purple is regal but butterflies!

And while we waited, we read the WalkAid brochure.  Any shoe!  Walk barefoot on the beach.  The beach is my sanity and peace and it’s been denied to me for years!  Plus because it sends electric impulses through the nerves, it could refire them.  The fitter says I can have it but it won’t help my knee and the way I walk now.  I feel like weeping in frustration and anger.  It’s a little bit me, a little bit them.

So for now, my plan is to get and wear ugly and fight.  And TRUST MY INSTINCTS.

My instincts say wearing it all the time creates dependency and weakness.

How does anyone navigate this mess?  And this fitter doesn’t believe I can improve.  Maybe I am a fool but I don’t buy that.  My plan is to really max healing my knee and getting the WalkAid.  Beach here I come.  Maybe I am delusional but that’s me.

Doctor Visit, the Spectral Leg and the Motivation of Ugly

Another doctor’s visit – this one for rehabilitation.  Here’s a funny to start. Tom’s dad had to go into physical rehab a few years ago in FL and when he rang to check on him,  they connected him with drug and alcohol rehab. So, mine is for physical evaluation.  We were waffling about going as it was close to rush hour in NYC bound traffic and over 30 miles from the house.

One of the challenges confronting dealing with this condition is that the onus is on the patient to discover and coordinate care and options.

Initially, my neurologist never suggested a brace.  I kept on falling.  However, I am used to falling and as a rule do what I have been told are very graceful ones.  Sometimes, I just crumple.  I was going through a stage where I was falling a lot and heavily on my knees. Our solution:  Harbor Freight for kneepads.  Uh, ugly and unwieldly so a friend referred me to an orthopedist she had seen for carpal tunnel.  My knees hurt and I thought I had done damage.  He wrote a scrip for the first brace.  It was filled by a little old man with hair plugs.  He told me I was lucky as I would soon have them on both my arms and legs.  When I went for the fitting, I swore he used a hair dryer to mold it to my leg.  I threw it in the trunk of the car and basically didn’t use it for about a year.  It was white plastic and covered my calf.  I used to crack up my physical therapist by saying it was a great shoe horn and helped me lift my leg into and out of the car.  I mainly used it as a visual cue and for some support walking and climbing stairs in Grand Central, Time Square and Penn Station.  I didn’t wear it in the office but had nice flats and kitten heels.  The spectral leg, as I prefer to call it, could only be worn with lace up shoes.  I am known for not wearing sneakers.  I was brought up to believe that they are acceptable for the gym, only.  I was never one of those women you would see walking in Manhattan in a suit and sneakers.

When things finally deteriorated and I started wearing the spectral leg  full time, the ugly tie shoes weren’t happening.  I spoke to the neurologist who gave me a scrip for a new one.  This one was to go completely under my foot and be less obtrusive than the original.  It would let me  wear different shoes, too.  My neurologist has always understood that looking good is important in helping me feel good.

The new spectral leg did not have shoe horn capabilities.  I can’t usually put it on myself.  As is my usual habit, I really didn’t use it for months.  Big problem when I did, sometimes, after just an hour my foot started to burn.  Other times, I could go for a few hours.  The pain was incredible.  Very problematic when I had to drive as my nerves would then cause the foot to jerk.  The GP said it was in my mind and I should talk to the neurologist.  The neurologist looked  at me as if I were crazy and said why would it be neurologic.  Finally, finally an ugly blood blister showed.  I’ll spare you the disgusting pictures.

New insurance, podiatrist.  He says it’s the spectral leg.

Back to neurologist.  I show her the pix.  She recommends a physical rehab doctor.  Ha, my insurance doesn’t cover him.  We go on a quest to find someone who is on my insurance and can treat my issue.  As this is going on, my walking and mobility are deteriorating.  I am hyperextending  my leg.  When I walk, I look sort of like Quasimodo and Igor.

We find a doctor, who is covered, who works with feet, is local and has available appointments.  He was honest enough to say he can’t help me.  However, his take is that the condition causes my nerves to flare and offers me drugs! And a referral to today’s doctor.

This is the first time, since the whole thing started that someone really evaluated the way I walk and move.  How come this took nearly 10 years.  No looking back but maybe, just maybe I could be in a different place now?

I explained how I don’t wear spectral leg in house.  He admired my seasonal cane.  We discussed how my neurologist and physical therapist suggested a walker.  He concurs but calls it a rollator,  He suggests it can be available in pink with a seat.  Tom quickly vetoes him on that before I can.

Next, yes a new spectral leg, an uglier one.  It will stabilize my knee and hips.  Some of me is still strong but my abductors are very weak.  He said watching me walk with my hyper extended knee hurt him.  If I don’t take care of it, I can become arthritic and the knee much worse.  I get that.  This new spectral leg is going to have major knee support and more of a back.  He says my little booties won’t work.  I’ll need sneakers or orthopedic shoes. NOT!! NOT!!  I will not do ugly.  He did suggest a shoe store and those shoes are UGLY  and a  few hundred dollars.

He does agree physical therapy and the gym are very important and will help.  Of course, insurance won’t  cover enough sessions. And I have to wear it from when I wake up.  I almot never wear it in the house. And almost never use a cane, either.

I am beyond upset.  I haven’t exercised enough.  Vicious cycle  – I can’t go to the gym so I get weaker.

This doctor, as does my neurologist, believes I can regain and retain muscle.  So Plan B – back to gym as soon as I can with existing walker, seasonal cane and spectral leg.  DO NOT THROW OUT existing ugly shoes.  DO become fanatic about clean eating/auto-immune diet.  This is the kick in the pants I need to commit.  Ugly inspires