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!

March 2016 Check In

How did I feel this past Month?

A very mixed month with peaks and valleys.  Getting a job and maintaining funding has been consuming.  Some days are great, others less so.  I am fighting the blues. It’s winter so that’s not abnormal. The season distresses me.  My condition makes me housebound more than I’d like.  Also, not having income makes us stay at home – no joy-shopping.  I am in a waiting mode.  It’s never easy for me.  Sometimes, I am a slave to that e-mail, waiting for news, for any movement.

What did you do for yourself this month?

Still with the gym and less so Zumba due to the weather.  I can’t really go out in rain or snow, too much chance of falling.  I have started to write again.  I started journaling in January and am writing in the day.  I have continued to clear clutter.  I am trying to reach out to people/

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

Back mostly to smoothies.  They really help my system and mitigate my sugar cravings.  I created an alert on my phone to remind me to have fruit in the afternoon and my Bac pill.

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

It’s exciting.  I am feeling achy at the gym.  I am taking it as a sign my nerves are reconnecting.  On the flip side, I seem a little less flexible and continue to experience balance problems.

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

My friends. The gift of faith.  I have been playing with “The Power of Positive Thinking” and it has reconnected me to faith.  The love that is in my life.  My stepson brought me the most beautiful rose on Valentine’s, unexpected and lovely.

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

No surprises.  No mission statement.  Purpose?  Let others benefit by my fight. Integrity.  Principles do count.

Conventional medicine  Just the Ampyra and Baclufan.  Really beginning to get that the right food and rest will do a lot.

Symptoms –  Hands are becoming a problem.  Fighting it of course!  Balance and flexibility which can be addressed with increased determination

What symptoms are most troublesome  – The lack of freedom.  As I write this, the newspaper is in the driveway and I just can’t go out and get it.  My increasing reliance on the cane is hindering me in my job search.

Do I blame myself for things – Of course, between stress, wrong food and not enough exercise

How is stress level?

Still high and who wouldn’t be between money, job and health.  This is becoming my new normal.

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

Remember to breathe. Have faith.  Eat and exercise properly.

February 2016 Check In

How did I feel this past Month?

Like I always do.  I fell apart after the main event.  Can I say Babka?  But I have been working out and mostly take care of me.

What did you do for yourself this month?

Gym, Zumba.  Gratitude journal.  Applied for jobs like crazy.  Writing a bit more.

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

Struggling to get back on track.  Still trying to mitigate as the holiday stuff leaves the house.  I started again having a green smoothie practically every day.

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

Definitely more gym this month and started Zumba.  Zumba gives me joy and frustrates me at the same time.  I can do so much less than I used to.

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

Well things are moving along.  I had companies want to talk to me about jobs.  I was able to pay my bills.  I have amazing friends

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

I guess at the end of the day I want my life to have mattered and changed someone else’s positively

Conventional medicine  Just the Ampyra and Baclufan.  Really beginning to get that the right food and rest will do a lot.

Symptoms – Balance is definitely off and my hands are getting weaker but I am fighting.

What symptoms are most troublesome  – The balance and being confined when there’s snow.  Three years ago I could dig myself out in the driveway.  Now I can’t walk outside.

Do I blame myself for things – Sure.  Still not aggressive and focused enough.  I let this into my life.

How is stress level?

Through the roof.  No job.  Confined to the house.

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

Change the food more and keep on plugging away.

December Warrior Check In

Oh my.  I am not working a job and just realized I missed!  I am changing the questions from today to the previous month.  It’s more accurate

How did I feel this past Month?

Well still mixed.  I am still not working.  I have been getting much needed rest.  It is grand not to wake in the 4 a.m.  hour.  Having no money – not so good.   I don’t feel right about decimating my savings.  I worked so hard to put that money away.  I was finally at a point where I felt comfortable.  I know life isn’t about being material, truly but it was nice to go to dinner at a nice place and not stress, to get nice “stuff”.  I am trying hard not to be angry and resentful as that takes away from me and only lets them win.  I do believe that the evil you do comes back to you so I know the person behind what’s been happening will get it back in spades.  The way the world and life works I may not see it and that’s alright.  I do know that this time though I am not going quietly into the night.  I am going to fight it to the best of my abilities and limited finances.  So, in a certain way it is empowering.  I have reflected on what I have walked away from.  I have always been a great walker. Uh, slightly sarcastic.  Instead of dealing with anything, I just walked away, sometimes literally.

What did you do for yourself this month?

See above.  The rest and exercise have been great.  A lot of reflection.  I have started to write more and reconnect with people.  I am also evaluating how I have and am living my life.  On the fun side, getting ready for the holidays.  The Elves workshop is this Sunday which gives me enormous joy.

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

Trying to return to good eating slowly but surely.  It has to be the key.  What I have been thinking is that it really specific to each person within parameters.  So no gluten is a no brainer.  Eggs, not so sure.  Definitely non-processed.  Sugar is bad.  I don’t think it’s possible to cut it out completely but it can be taken way down.

Did I exercise?  What did I do?  How did it feel – I am going to the gym on a regular basis.  It’s showing in my waist but not so much my legs.  I am not walking enough now that I am not working.  This has been complicated by my fitness trackers not being accurate.  I understand for the holidays that situation is going to be fixed.  I am not getting the same addiction to exercise that I have had in the past.  It is partially due to the fact that I can’t do exercise classes.  I have been faithful with my Zumba but am beyond frustrated that I cannot do what I used to.  In my mind I feel the rhythm and I know how simple it is and my body won’t do it.

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

Blessed, especially at this time of year.  We had all the kids the night before Thanksgiving.  It fulfilled a dream I used to have.  I had a family around a table, laughing and talking and eating good food.  I feel grateful that despite not having a job, I have a home and we can eat.  Oh and yes, we somehow managed for now to have decent medical coverage so I can get the drugs I need to keep on walking

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

Alright, no mission statement yet.  I believe in principles and integrity.  Years ago a minister told me I had an enormous capacity for joy.   I haven’t lost it this go round yet.  It’s important to share joy.  I tell my little “elves” that every year.  So, I hope that is something I will leave behind. And I stand on principle, proud of that.  By fighting back, I am fighting for others too.  At Zumba, I have been told I am an inspiration.  I have never wanted seriously to be a poster child.  However, if I can show people I believe in my life maybe they can too.

Conventional medicine  Well, I received the Biotin but unfortunately it is too expensive for me to get without a job and is never covered by insurance

Symptoms – Walking deteriorating a bit I think but I see it directly relational to stress.  I am weaker.  I had problems with a 2.5 pound weight the other day.  I used to easily lift 45.  I have had a UTI which also has impacted me.

What symptoms are most troublesome  – Walking as always. A bit wobbly too.

Do I blame myself for things – Same as always. Of course! Yes, I am still blaming myself for not being aggressive against this. However, getting back to me, slowly, slowly but surely!

How is stress level?

Moderate.  There are days it peaks for sure.  When I take money out of savings to live and when I have to charge things.  But not commuting is so huge.

What can I do tomorrow to make it better than today?  Eat properly, exercise, have an attitude of gratitude, be productive and positive.

Wishing all joy and health in this season of light and darkness.  We shine light in the darkness and then it ebbs into renewal.  Don’t you think?

Style and Grace and holding on to cry at home

I can’t tell you how many times I have said to myself hang on until you can get home and cry.  I was brought up not to cry in front of people, not my family particularly, but certainly the outside.  I have tried to live my life, especially when confronting obstacles and difficult situations, with style and grace.  It’s like a mantra for me.  Big girls don’t cry.  I have said “Style and Grace” every time I have been let go on a job.  I use it all the time, most recently in the situations I have been confronting on my job.  Okay lately,   I also take a bubble bath the night before potentially contentious meetings with Not Soap Radio – Bathing with Sharks.

I am getting tired of all of this.  I am hanging on.

So, I was not supposed to cry.  I didn’t receive my diploma on graduation day.  This was huge.  Additionally,  I never thought I would get married or have a wedding so this was going to be my day.  I was tapped on the shoulder and told I wasn’t graduating as we started the processional.  No one understood why I didn’t have my usual smile.  As we dispersed and I saw my parents, I started to cry.  My mother slapped me and covered my eyes with huge dark glasses.  I was out of work for ages and got a job.  I went in to have lunch with the owner.  He told me I didn’t have one; he had changed his mind.  Yes, here it comes another smack and dark glasses.  My husband was arrested and in jail right after my father died and I couldn’t get him out,  I sobbed on my sister-in-law till I wet her clothes.  Came home and started to sob.  My mother looked at me and said ” I thought I raised a grown up”.  And no, of course I didn’t cry when my parents died.  I gave both eulogies, no tears.  This comes at enormous cost. Yes,  I cry,  I gush rivers, just not publicly.  When I was diagnosed, no tears.  When the first physician’s assistant said “I think you have MS” I sobbed in the parking lot, not in front of her.  Maybe three times since 2008.

I am tired of holding on.

I had a meeting with the other ugly stepsister (work)  three weeks ago.  I thought I was being let go.  Stood outside and repeated Style and Grace, style and grace.  Summoned my grandmother’s spirit.  Walked into the room with my head held high and  SMILED.  Bathing with sharks.

So, this week:

I find out on my birthday that my health insurance company is closing.  Do you know how many years I had to wait to get covered for this drug?  It truly helps me walk longer and better.  If you saw me on the street you wouldn’t think so but it is better.  My new normal.  What happens with new insurance?  Scared.

Next,  I return to work and one of the ugly stepsisters wants a meeting with me to discuss what I do.  This is the woman that I reported to briefly.  I was like coyote ugly trying to chew my leg off when I was working with her.  So, once again we go through  “What do you do, how do you do it?” And  she is going to have someone who uses the word “wordsmith” to write something for me!  I can read the handwriting on the wall.

Husband has had a slip or several so I am back to being tense when I get home.  No real safe haven.

I had an appointment to discuss possible options yesterday.  Between the two meetings I literally couldn’t walk and was collapsing, bent over.

Today, I still felt still weak. Lots of training, walking, meetings.  Ran into guy who brought me back to this place. He’s been trying to save my job.  Calls me into a room so I thought I was finally getting the move and recognition.  NOT!!  My agent who handles my billing is going out of business.  No one else wants to take me on.  Essentially, this means I am out.  What do I do?  Go back to my desk and frigging smile!  Ok so I contact the trifecta- my doctor, lawyer, accountant.  In addition to my smile, I am known as a survivor.  Keep on murmuring style and grace.  My body is channeling all the stress and I lurch to the train.  They change the track and the escalator and elevator are broken.  Nearly fell going upstairs.  I do make it to the car.  My whole plan this afternoon was to get home like a pigeon and cry.  I started to cry close to home on the phone with my husband.  His response?  “Don’t be such a girl”.

No tears but my stress pattern is reverting to two I had years ago.  I used to have pre-fainting – pre hyposyncopia (sp).  I turn grey and my eyeballs roll  up in my head but I don’t faint.  Later years, I got palpitations.  Tonight both.  I know it’s holding the anger and the tears.  Now with this condition it goes through my body.

And tomorrow – style and grace.

Another Doctor’s Visit and MC

Well, I went back to the doctor for a check up after Ampyra.  I wore a dress as I had had an important meeting at work.  So peach sheath with eyelet lace top, white shawl, pearls, the spectral leg and palomino tie shoes.  She told me how good I looked and loved the shoes.  I don’t mind them.  She also assured me that I looked fine.  I hate feeling odd and spastic. In fact, she said I looked great.

My walking is improved.  We knew that already.  She was really happy. I have had no adverse reaction to the drug.  I just read someone else’s blog about drug costs.  I was originally not covered for Ampyra and my insurance blithely told me $1300 – $1500 a month.  I had to go on Affordable care.  I am covered!  But here is what’s odd.  I make more money than I ever have but drug company now is subsidizing!

Now, I have insurance so we can discuss Copaxone.  She told me which I  knew it would be off label, shots ( I don’t do needles) and it’s only been shown to be effective  in men.  Our decision?  No.

Next we discussed my scans.  Again, due to Affordable care I can afford them.  I was dreading this as my hands are going.  Right now I am not typing this at my regular, typical speed.  Forget my already bad handwriting.  There are times I can’t use my fork properly.  This annoys me as growing up I was told “don’t shovel”.  My husband has to put up my hair. And my left foot feels like a club.  The MRI says NOTHING has changed.  Now this makes no sense.  I used to walk into that office with heels.  I didn’t wear spectral leg all the time nor a cane!

Our feeling is that’s why we call it MC for my condition.  We don’t think it’s the other.  I believe this first ran amok in my system when I had no job or dental insurance and a hole in my mouth and subsequent infection.  I eventually had work done.  And recently, the bridge ( same tooth) was really loose.  I was bleeding through my teeth there.  I had a cavity filled.  The dentist was going to remove the bridge and remains of the tooth.  His words  when he went in, “It’s very mushy”  Lots and lots of decay which means poison in my body!  I have to go to the oral surgeon for this and my wisdom tooth removal.  I am supposed to do it at the same time.  More drugs in my future.  I have a meeting with the head of my company July 31 and don’t want to take chances so will schedule right after.  We think this will help me improve.  I am also going to be more aggressive in eating clean foods and the exercise.     Improvement will and can happen.

July Warrior Check In

Back for July and late again.  Life has been a little intense lately.

How do I feel today –   Better than I have for the past few days, see previous blog.  I know I will never go back to the way we used to live.  Today is a holiday and the weather is uneven.  This works out as my plan for this weekend is/was to paint the office and catch up on my life.  I blog sometimes on another site and haven’t done so for ages. I am starting a new business and need to get cracking.  I really need to clear the decks.  It was great not getting up early today and not going anywhere.

What did you do for yourself today?     I slept, I am cooking, blogging and cleaning.  It feels peaceful.  I like spending time in my head.  I think I will read trashy novels.

What did I eat today and how did it make me feel – Still cheating with the good stuff.

Did I exercise? What did I do? How did it feel – Thinking about getting on the Wii and playing games, particularly balance ones.

For whom or what are you grateful? What matters most in life?   Grateful for friends. Grateful husband is back on track. Grateful that I can afford to take the time off and for the little things in life that are huge.

Do I have a higher purpose or driving force in my life?   Make a mission statement –   sounds too affected for me.  Working on the Mission statement, something along the lines of do no evil and never ever give up

How long have I been treated with conventional medicine Ampyra since April. I have walked more than I have in years.  The Ampyra continues to work.  I am walking more with less fatigue.  I even handled Grand Central and Penn pre-holiday!

The first time I had a symptom – June 2004 walking on the beach boardwalk.  Think it’s time to add last time -uh this week cramping and off balance

What symptoms are most troublesome – wearing ugly shoes and not being able to really walk.  Problem with the new spectral leg is my foot is too weak to get into the shoe

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this. Still!  I let go of me and who I am and could be.

How is stress level? Stress is still there but I have taken time off and am trying to keep things in perspective

What can I do tomorrow to make it better than today?   Go to the gym!  Continue to do what makes me happy on my day off.

Until next month.