first steps

Flip Flop Girl

Posted on by tresswann

Somehow I never posted this:  And it’s summer and no flipflops:

I love flip flops.  I always have.   When I was little, the other little girls wore them.  I wasn’t allowed except for the pool.  We called them zorries or thongs.  My mother called them slam patters.  My mother had very definite ideas about children and shoes.  In the spring I wore saddle oxfords, white.  They had to be polished every Sunday night with that horrid white polish.  As soon as I was old enough not to wear them.  They became fashionable.  It is one trend that will never work for me.  In the summer, something like the Greek fisherman’s shoes.  Buckles and perforations.  In the winter, suede ghillies that had to be brushed.  Not fun.

I got away from home and started wearing them in summer on the beach.  They were like 19 cents and unfashionable.  I had more than one pair.

I met a man who wore flip flops and loved the beach.  Well, I still have his flip flops.  I would get all colors and kinds.  I would wear them with everything.

I went to a party in a turquoise mini skirt at the start of fall with black patent flip flops with a fake diamond in the center.  Diamonds on the soles of her shoes.

Then I married someone who didn’t wear flip flops and things just spiraled downwards.  He didn’t like the beach because there was sand.  I felt like I couldn’t breathe.  I left and moved home to my parents.  By that time, my mother would wear them to water the lawn.  And I did have a few that I wore with censorious views.

I moved in with another man, older.  He knocked the joy right out of me.  I left.

I got an apartment and bought pink platform flipflops with pink flowers.  My best friend same over and said Thank God you are back.  “What do you mean?”  “You are wearing flip flops again”  From then on, it was flip flops in the summer, even at work.  And I work in a bank.  During the blackout of 2003, I walked out of New York City in a pair of black platform flip flops with glitter straps.

People bring them back for me from trips.  I have ones from the Far East and from Hawaii. I could go on and on.

And up until two summers ago, I was still wearing them at the bank – gold ones, silver ones and black patent. The gold ones are still under my desk.  At one time I had over 10 pairs of shoes under my desk.

I can’t wear them any more!  My feet no longer grip them.  This destroys me.  It’s my persona.  I miss me.  Instead I have been reduced to tie shoes – back to my childhood.  This is not right.  I mean really. No flip flops?  Also no beach, no walking.  This cannot continue.

So what do I do?  I’ll tell you, I haven’t thrown out a pair, even the pink platform ones.

With work this summer, maybe I can wear them again.

Ampyra, Being a Libra and what else can happen

Posted on by tresswann

Yes, it’s been a long time and so much has happened. And I am out of balance.

This is going to be long as I have lots of catching up to do.

I have had good luck with the Ampyra, no side effects. I am able to stagger longer. I actually am able to walk longer than previously without staggering. I may have plateaued but am not sure. I do seem to be picking up speed. This is relative. I used to walk a 17 minute mile easily. I have walked more than I have in over a year.

Now that I have this drug/tool I need to work on the surrounding bits like diet and exercise to maximize the impact of the drug.

Which brings me to the being Libra/out of balance bit. As I am regaining some mobility I have been reflecting. I have wanted to write for ages! But…. As my walking has minimally improved, I am realizing how narrow and unbalanced my world has become. I know part of it is due to the mobility issue and the rest I am not sure. I wake a little after 4 a.m. Monday through Thursday. I am out the door usually by 5:25 a.m., in the city before 7 a.m.; at my desk by 7:30 a.m. I leave at 3:18 p.m. I have shortened my hours. I am trying not to cut off my nose to spite my face. Most days I work straight through. I then struggle to make the 4:12 p.m. When I was well, if I left that time and walked, I would have been on the 3:46. Since the Ampyra, it’s been a bit better but some days I can barely get myself onto the train. I get in the door around 5:45. I check my work email since I am conscientious. I have mostly checked my email, F B and blogs on train. My husband has the news on. I make a smoothy and/or salad, pack my lunch for the following day, oh yeah maybe fill Tom in on how my day was. By this time, it’s nearly 8, time to take a bath and get ready for bed. I used to go to Zumba twice a week but with winter that stopped. I read in the bath. I used to read a book every two days or so (seriously, I need to read to live) write letters, call friends and do things like hobbies. Ok, I did stay up an hour or so longer and sleep an hour so longer.   I almost never watch a TV program from 8 -9. I never used to see programs at 10 but I could watch between 8 and 10. Yes, I was a little younger, too. But lately I feel really out of balance. As a Libra, funny as it sounds, it hurts even more. I need equilibrium.

And what else can I deal with? Well. I have had dense breasts for years. I always picture them as saying d’uh. So years ago, in the beginning of this downward spiral, my mammo showed something. I told them I had fallen and it could be a bruise but no. So I had a sono and they said biopsy. I had this December 23. New Year’s eve they said it probably had been a bruise. 6 months later, it was the other breast. I call them equal opportunity breasts! It took about 2 years but things finally calmed down. So went for my mammo two Fridays ago and received a voice mail at work on Monday. Husband says it’s nothing. I said they don’t call if it’s good news. Who was right? Me! I wasn’t giving up my time off so next Friday more studies and a sono. I am trying not to think about this. I just can’t take much more.

On a more positive note, even though I am not liking my job (another blog) I am getting more projects. I don’t feel warm and fuzzy. I did apply for a job close to home. I usually don’t like working close to home. Snotty me thinks they are much too insular. You make less money and people think less of you as a woman working. Seriously! All that being said, I am in discussion with an LI company. It would be less than 20 minutes from the house. Ironically, I would have a longer work day. I am slightly optimistic but nervous about showing up with a cane. My argument – I commute and there’s nothing wrong with my brain!

I did get my new spectral leg on Thursday morning and have high hopes. But even though it’s thinner, it looks more permanent. I haven’t really worn it as I am on holiday over 100 miles from home and didn’t want to drive with it untested. I have walked lots. Yesterday over 4 miles, which for me right now is awesome.

Today we went back to Hyde Park and a park ranger suggested to my husband that we could get a wheelchair to use there for free. I thought I was walking ok, not great but alright. After he left I started to cry. Is this what I have come to? Is this how people see me? It’s not how I see me. I don’t want this. We were at Hyde Park and I felt if FDR could be president, persevere with polio, what is going on with me is piddling and surmountable.

Back to staying strong and moving forward, literally one step at a time.

March Warrior Check In

Posted on by tresswann

Back for March:

How do I feel today – Mixed blues.  Despite the fall and my face, we ran around a lot today.  First thing, we went to Trader Joe’s and Omaha Steaks.  No, no meat for me.  Husband’s youngest just got his first apartment and we filled their freezer.  Then on to the Chocolate Duck, again not for me, getting a class for a niece and Easter Egg supplies for the kids.  Then on to sister in laws to drop off things and pick up Girl Scout cookies.  Not for me.  I don’t eat them, ever.  Visit kids with food, flowers and pyrex for housewarming.   I gimped through everything very frustrating and depressing but I still get going.

What did you do for yourself today?

Well, I blogged and then I am going to make a wrapped bracelet.  And it was fun shopping.

What did I eat today and how did it make me feel – Sigh.  Not good.  I started the morning with coffee and a piece of Christmas pudding.  Toffee crunch after trader Joe’s.  A streusel apple spelt muffin.  Quinoa chips.  Dare I say, steamed pork buns for dinner?  But I have been really good all week, smoothies and salads

Did I exercise? What did I do? How did it feel – Still not going to the gym or Zumba.  Still housebound, still doing the stepper and recently added treadmill.  I am working my physical therapy back in.  Hurt in falls so I am back to square one with Abs.

For whom or what are you grateful? What matters most in life? Grateful as usual to be warm safe and dry.  Grateful that I didn’t seriously hurt myself in my fall.  Grateful for the kindness of strangers.  And my job.  And my stepsons are awesome.

Do I have a higher purpose or driving force in my life?   Make a mission statement – Higher purpose still not defined.  Beginning to dream again

How long have I been treated with conventional medicine Not this month but I think I need to go to the doctore.

The first time I had a symptom – June 2004 walking on the beach boardwalk

What symptoms are most troublesome – Duh, gradually losing my ability to walk and being dependent.  And the falling.

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this.

How is stress level? It’s high.  Now I am really frightened about how things are going down.

What can I do tomorrow to make it better than today?   Start over.  It’s a new month.  I still have new days.

Until next month.

Valentines and Visions

Posted on by tresswann

Last night I was in the recovery room as my husband was coming out of anesthesia, he looked at me and smiled and said “I am glad.  We have been through so much and we are still here”.  And it’s true.  We have been married for a little over 10 years and known each other for 12.  Sometimes, we joke that we have been through more in our short time together than most couples in years of marriage.

I was thinking about that last night.  We have been through quite a bit.  Literally, a year after we met my father died suddenly and unexpectedly.  I was left with a mother who was in a financial mess, had dementia, though I wasn’t acknowledging it at the time and an abusive brother.  A week after my father’s funeral, my husband (we were not married at the time) was arrested at my mother’s house on old charges.  This was in the beginning of November.  In mid-December, I went for my mammogram and they found a lump in my breast.  He was still in jail, my mother was shattered. It was a false alarm.  T was released from jail at the end of January.  My brother was taking things from my mother and making abusive and threatening calls to me.  I obtained a temporary stay away.  On April 1,(not an April fool’s as some would have it)  I was told my job was being terminated.  I was relieved but I was financially responsible for my mother’s household.   T and I started going in and out of court fighting with his ex-wife over myriad issues.  Little did I know that I was about to become a regular at court, so much so that the court officers recognized me! We married. I got another job, a very good one as corporate training manager for a major retailer.  During this period,  my mother would call with problems and I would ask her if my brother couldn’t help and I was told “oh but your brother has a job and works”  Uh, he’s  a truck driver?  This put enormous strain on us.  My previous (and current employer) called and asked if I could do a project, so I started doing two jobs.  The day after I told them, it was too much for me, the retailer filed for bankruptcy and I lost my job – two in a year!   My friends teased me that I was off for the summer again!

Nightmare time.  I called my mother in the morning and she didn’t answer.  Drove over thinking she had left phone off hook or was confused because by now she had been diagnosed with dementia.  I found her on the floor with a broken leg.  Due to different factors, they couldn’t operate on her for three days nor give her painkillers.  My brother went to work.  Husband stayed with me as they operated.  Brother threatened me in nursing home when she was in recovery and nursing home went along with him.  Husband was besides himself.  We had to sell my mother’s house whilst she was alive.  You know how hard it is to dissolve your childhood home after your parents die?  Picture doing it when one of them is still alive.

The summer I lost my first job was when I had my first incident.  I was walking on the beach boardwalk and couldn’t.  Fast forward a couple of years and continued odd incidents and the doctors started.  I received my diagnosis after an inconclusive spinal tap.  Like my husband told them, when you don’t know what to call it, this is what you call it.

After I sold my mother’s house we bought a house less than 6 months later.  See, the pattern, stress and more stress.  And boys totaling cars.  The youngest did two in 24 hours.  And boys in emergency rooms…

My mum died.  What is important is that we had not been together that long. We were still in court with his ex and now also because of our issues. My husband has always had alcohol problems.  My diagnosis, death and finances set him off and we entered a series of rehab and relapse.

He was diagnosed with prostate cancer.   There were complications.

Everyone told me from when our problems started that I needed to cut my losses.  The courts, the counselors, my friends said the odds were clearly against us.  And through out all of this, I had  this vision of the two of us walking out together, arm in arm, beating the odds.  Well, it took longer than I thought or wanted.  We came through.

The last time he had an operation, I walked out on him.  Yesterday, I was there the whole time.  We are truly partners.

So, visions.  I told T last week that just as I had this vision of the two of us beating the odds,  I am picturing myself walking again, arm in arm on the beach, wearing the clothes I love, dancing, doing the things I love, no limits, no boundaries.  It’s just this vision that I am keeping in my head.

Valentines and visions.  Love.  I believe that is the root of what brought us through.  And I am going to make my new vision real.  It may not happen when I want it to happen but it will happen.

The Dream Reader Assignment

Posted on by tresswann

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A Blogging 101 assignment. Can I say I didn’t start to blog for the readers but for me, the writer. This is sort of a King Midas in the bulrushes kind of deal.

My dad was one of the real pulp fiction writers. One of my earliest memories is turning over in bed as a child and hearing the typewriter banging and clanging. When he was on deadline, he would work through the night. We always read and wrote in my house. And Daddy always ripped everything I wrote to shreds. Not that I always minded. The first time I wrote a business memo after he died, I was lost.   He became president of the NYC chapter of MWA. I used to take him to the Edgars. There was an Ellery Queen/Alfred Hitchcock party beforehand. I was always the non-writer. The evening was almost always an “enough about me, how about you? How did you like my latest book?” At the last one we went to months before he died, he overheard someone questioning me yet again about my writing. He knew I always wrote. So why wasn’t I doing something with it? Well, I told him I felt I couldn’t while he was still alive. His gift to me and it was huge, he told me not to wait, that I had to do it. Well, he’s been dead 11 years and I still haven’t. No, Daddy is not my dream reader, far from it.

I need to write. It makes my life better. Is my dream reader me? No, as Daddy would have told you, I am the critical reader. Yes, I live to read as well. I lose my equilibrium. Writing is a close second. I don’t do it as much anymore for me. Email sort of saps me.

So again, I am doing this blog to save me. If you read my About, it’s about my confrontation with disease and mortality.

Back to dream reader…uh, someone who reads? Well, someone who might get me and where I am coming from (and where I need to get to) I haven’t given much thought to a reader. It’s about the writing also known as venting. It’s one of the reasons I haven’t announced to my small world that I am doing this. Some people know I have started but I haven’t told them where to look yet. Dream reader – someone who will go along for the ride.

My First Step

Posted on by tresswann

Taking the first step is the hardest. It’s always the hardest, no matter what you do – a job, a relationship, a commitment. This has involved too many first steps and first times.

I have always been “nervy”, high spirited, a stress bunny. I have always fallen. My senior year of college with so many first steps approaching, I spent on the ground of the quad, looking up. It wasn’t my shoes, it was my fear causing me to tumble. Of course, now the doctors say that it was the seeds of my condition manifesting itself. Not true, just a facile diagnosis. Fast forward decades and within the period of a month my father died suddenly and unexpectedly; I undertook financial care of my mother who was subsequently diagnosed with dementia; my then live-in boyfriend, now husband was arrested at my mother’s house and jailed, and they found a lump in my breast that was biopsied the day before Christmas Eve. Stress? I think that’s where it all really took root and started. The only way they would allow me back in the office to work is if I agreed to counseling. The counselor said “Any time you are upset you let your feet out from under you.” Eureka! And during that period I once again was falling. The breast lump was later determined to have been the result of bruising in a fall.

The job ended and so did the dental insurance. A tooth fell out that had had root canal and I had an open hole in my mouth, 2nd doorway in.

So we were walking along the boardwalk a little over ten years ago and I started to stumble and be unable to walk. Husband said my motorcycle boots were the wrong thing to wear. NOT! I have walked blocks and blocks in 3 – 4 inch heels.

Over the next few years, these incidents started coming closer and closer together. I am a person who regularly walked a 15 – 17 minute mile.

First step – I went to my husband’s physician’s assistant. She bears an uncanny resemblance in voice and manner to “The Nanny”. In 15 minutes, she said you have Multiple Sclerosis. I went into the parking lot and had hysterics. Many doctors and many firsts after that – first MRI, first (and only) spinal tap, first neurologist, the diagnosis was confirmed. Or like my husband said to one doctor when you don’t know what to call it this is what you call it. She said he was right.

First step – nutritionist with a ridiculous diet and weird views, a no go

I asked all the doctors if there was anything I could do and that I was open to alternate solutions. One doctor told me to live a good life!

First step – acupuncture. It initially helped a bit. Then I felt like a pin cushion.

And the other first steps – first leg brace, first cane. Yuck.

And gradually realizing that even though I said at the beginning this would not define me or confine me, I woke up one morning and it had.

Through a series of serendipitous events, I found a book The MS Recovery Diet and this led me to the Swank diet. The only way I think I can do this is to blog. So, this is the first step.