Lotteries and Windfalls

As with many people in the US a few weeks ago, we caught Lotto fever.  Over 1 billion is worth a flutter.  Overall, I am opposed to the lottery.  Originally in New York it was supposed to fund schools.  Really?  And look at the schools in Detroit.  But enough of that.

We bought a few dollars worth of tickets and began to speculate.  What would we do?  Husband announces that first thing we get the absolutely best doctor in the world for what we call MC (my condition).  Ok, you may say I am in denial but it works for me.  Everyone is different.  And after that we would buy a nice house.  We would pay off the one we currently live in.  I must paraphrase Hyacinth Bucket a.k.a Bouquet – the house that is now next to the used car lot with the massage parlor.  The parlor or message store as the police referred to it in a report I made after I had another flat in my driveway is temporarily gone.  Funny enough, as soon as we returned from police, the big sign in the front was gone.  Do I need to say more?

Then after a house for us, one for each of the boys and husband’s sister.  And then?  Well, lots to real charity.  In fact, the other night there was something on the news about local people being displaced and renovations  would have run a few million dollars.   Husband said, “We could have done that in a heartbeat if we had won.”  Well, we didn’t.

Recently, I have undergone significant financial reversals.  No, not the stock markets.  More along the line of no income.  It appears that hopefully after all the belt tightening, this is about to change.  As I anticipate this, another list to make.  Late last summer, a man who saw me commuting, pulled up his pants (nothing lewd here) and showed me a device on his leg.  He thought we had the same condition.  It’s a Walkaid and there’s also another product called Bioness.  They cost a few thousand.  We didn’t have any money when we spoke to the doctor about it and she said it might give me the same results as the Ampyra or it might be better.  It tops my new wish list.  I had to cut back on my traditional donations.  I was an officer at a bank years ago.  One of the first things I did when I received it was write checks to my favorite charities,  My co-worker thought I was odd but it used to give me a kick, almost as good as sex, more like a deep kiss.  Donations to AAUW’s Legal Advocacy fund and the County domestic violence unit.  My two favorites.

So what else have I been thinking about and missing?  Well, as I have said before clothing is my life.  Therefore, I shop.  I love the air in stores, the undercurrent, the lust.  It energizes me.  I remember being in Paris once hungry and tired but in track of a shop I had heard about.  I found it and revived like a flower in water.  Due to my own personal economic downturn I haven’t been able to do it for ages.  I am surprised.  This situation has made me less materialistic.  Clothes and cosmetics aren’t really part of this list. When I received word that things were going to be ok, I admit to flipping through a Smithsonian sales catalog and seeing some Christmas necklaces that would be wonderful for my elves next year.

So what else is on the list?  I want a car.  I wanted one for my milestone birthday.  And not just any car, a “luxury” car.  I am known for saying carwise I am OK with a box, wheels and a radio.  I certainly do not see a car as a reflection of who I am.  My ex-husband and my brother always derided me for that.  I wanna Buick, like the commercial.  It’s cute.  My brother-in-law who is amazing with dealers and dollars couldn’t make it work for me.  The car represents getting something for me and for once not settling.  That’s what it’s about.

This is what I have learned during this setback, downturn, whatever you want to call it.  I no longer want to settle. Not in terms of what I do for a living, not in terms of a car, not in terms of my health.  Oh, right after car on my list I have sliders for Zumba for my sneakers and a personal trainer.

It’s been a huge lesson and one way or another, in my mind, I have won my lottery.

August Warrior Check In

Life is still intense. I am thinking about the “default future”

How do I feel today –   Pretty crappy.  I was in a slightly manic phase the last few weeks.  I couldn’t do things fast enough.  I knew I had to crash and I have.  I put in a high stress over 50 hour workweek this week.  Bed late every night.  I made a presentation to our head on Friday.  Well, all I can say was it wasn’t negative.  It is hard to live with the continual uncertainty about the job.  There never seems to be enough time.  I am a Libra and feel seriously out of balance.  I need to clear the decks and can’t.  I have started a new venture except I haven’t.  I have the skills and the tools to rock it and little Miss Sabotage strikes again.   The MRI shows no change but I seem to be getting worse.  I  think  I am going to look into genome testing.

What did you do for yourself today?

I tried to sleep late.  I read the Sunday times,  yeah!  Straightened up a bit.  Sent in a job application,  sat outside in the gazebo. Did NOT go grocery shopping or any kind of shopping.

What did I eat today and how did it make me feel – Getting back to clean and it’s the right thing

Did I exercise? What did I do? How did it feel – No excuse not to go to the gym and I didn’t.  Miss Sabotage.  My fitbit has been wonky lately and I know that I had at least two days closer to 12,000 steps.  Ain’t drugs grand?  But zip didn’t record

For whom or what are you grateful? What matters most in life?   I am blessed with the most amazing friends, truly.  I have a husband who watches over me.  I continue to have possibilities.  And this year, beautiful flowers in the garden

Do I have a higher purpose or driving force in my life?   Make a mission statement –   Never give up?

How long have I been treated with conventional medicine Ampyra since April.  The Ampyra continues to work.  I am walking more with less fatigue.  Friday high stress day and took subway to Village during rush hour

The first time I had a symptom – June 2004 walking on the beach boardwalk.  Think it’s time to add last time -off balance, weak knees

What symptoms are most troublesome -still hung up on the ugly shoes!  And my hands seem to be weakening

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.  Same as last month

How is stress level? Skyrocketing with work issues

What can I do tomorrow to make it better than today?   Rest, take a step back.  Contemplate that default future and SMILE

Until next month.

Flip Flop Girl

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.

Let’s go to the Videotape!

I am on video all the time and have been for years.    I interviewed for the job I have now via video with London.  My group was based out of London and we met via video at least once a week.  I am/was photogenic.  We used to joke it was just like newscasters used to say in the old days as long as you were seated it didn’t matter what you had on from your waist down.  I learned I smile too much.  Technology has improved and become cheaper so I videoconference even more -US, Ireland, England.  Every other Friday from my home, I attend a videoconference with NJ, NY, London and Tralee.  I keep a Post It over the camera usually.  The lighting makes me look bad and I am very, very vain.  I do remove it for my manager so I can see her eyes and then she turns hers off.  At my desk, someone just complained they only see my  coffee cup.

For the last year I have been using video to record a presentation.  It allows me to add voice and I cut my seated self out.  I have learned from that, that my practice of combing my hair once a week does not work for me, my hair looks better for work “UP” and contact lenses let me look like me.

Well yesterday I had a shock.  I arranged a taping for a manager.  And even though I work in IT and am not technical, I am the one who understands how to set up the equipment.  Same thing at home. I am the one who can program the remote.  It was a big presentation so I started the recording and moved to back of room.  My first thought today when I retrieved the tape was my weight loss shows.  The tape starts with my back to the camera addressing people.  I normally disfavor pants at work.  I was brought up in a “ladies don’t wear trousers home”.  Think I saw my gran in pants once!  But I had a lovely new pantsuit. I am watching, thinking this works and then I moved to the back of the room.  I have never seen myself walk on film and with a cane to boot.  It was AWFUL.  I looked spastic and like Quasimodo.  And I was walking well for me yesterday. I did over 10,000 steps and made it back to the railroad in half an hour.  It was horrible.   I had no idea I looked like that!  I need to fix this.  I need to work harder.  Last summer I wasn’t using a cane at work.  Then I started using it in Penn at night more as a deterrent for people walking into me.  Now, I walk, no let’s be specific, spazz with it all day at work.  At home I lurch around grabbing walls and making my husband crazy.  Hand marks all over.  This has been so insidious.  I nearly wept when I saw the video but again, a home where you never, ever let people see you cry.

I need to start winning this fight,

Ampyra, Being a Libra and what else can happen

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.

Ampyra Plus

Well, I started the Ampyra a week ago.  I had fought against taking drugs for ages.  When I finally gave in,  my insurance wouldn’t pay for it.  New insurance pays.  And it’s reasonable.  So, I started it last Saturday.  Yes,   I was/am worried about side effects.  Uh, seizure is one?  Much trepidation.  So far, so good,  no side effects.  And I am walking better!  It’s amazing.  Thursday, I walked 11,000 steps and was not stumbling and half dead, that night or the next day!  I can’t believe it.  I am fearfully optimistic.  On the one hand, I have read the literature.  This is not a cure.  I can continue to deteriorate.  I do not want to think about this.  Here’s where I am going.  I am taking this as a second chance.  I can go back to Zumba.  I need to find my way back to the gym and build those muscles.

This morning,  I went for MRIs.  I have been getting them from a research study.  It was de-funded and the doctor pointed out that it had been two years and since my left side seemed to be having trouble….  This time the insurance is good.  I didn’t want to go.  What is the point?  I know things have changed.  There’s nothing they can do, so why?  Of course, I had to take the spectral leg off for the MRI and the tech wanted to wheel me into to the room in a wheelchair.  NOOOOO!  I stumbled and gimped on it.  Puhleez!

And I am on a roll,  yesterday I went to get a new spectral leg.  I was shown one that had two thin metal strips in the back but my ankle is too wobbly.  However, there is a graphite one with a thinner back and slimmer sole.  I may be able to wear  nicer shoes. I hate, hate looking disabled.  I am like a newscaster behind a desk – everything looks good until I stand and walk!  I am very vain and ugly shoes impact me.  And I don’t buy what some of my friends tell me about being older and not wearing heels.  Okay, I wouldn’t want to wear stilettos anyway but I see no reason why I can’t with practice and determination get back to kitten heels.   Let’s not even consider crutches or wheelchairs.

My goal is to go back to wearing spectral leg only to and from work and to ditch the cane.  Build those muscles.  So, I need to amp the clean eating.  I am on my way.

She Gonna Cause the Rafters to Ring- Dolly Dawn

Dolly Dawn – part of my childhood.  I come from a mixed family.  My mother was Jamaican and my dad was from NY and Jewish.  We celebrated everything.  They respected each other and their faiths.  So tonight the kids and I celebrated Passover.  It was one of those weeks.  First night of Passover was Good Friday – not happening.  Saturday they had a Seder with their mother.  Sunday we celebrated Easter.  Monday was out due to Sunday.  Tuesday I had a doctor’s appointment.  Wednesday was their mother’s birthday so here we are tonight.  I came in late as the trains were beyond messed up and just turned on the ipod.  It was West Indian music.

After they left, I cranked the Belafonte. And danced.  Well, it kinda resembled Tom Hanks in Forrest Gump.  But I sang the songs of my childhood and moved. I played calypso. 

Pretty, pretty Dolly.  She gonna dance, she gonna sing, she gonna cause the rafters to ring.  In my family, we danced, especially around holidays.  My dad used to spin me and sit down.  We would limbo.  I felt reconnected tonight. I miss my family.  I miss dancing.  I kinda did it tonight.  It gives me hope – spectral leg and all.

Perhaps Evelyn Brandon, Donald and Elaine Mullins, Garth MoodieFamily and friends – I hear Ska in my mind when I look at this

Aftermath of the Doctor’s Visit

What can I say?  I never like going to the neurologist as I find it a very draining experience. I hate seeing people worse off  than  me.   She is always telling me how I am not doing badly. Last time she said I was more spiritual.  Don’t get me wrong.  She is nice and listens to me.  Not sure, if she really hears me.  When we first started, she said everything wasn’t all about the disease/condition.  She was for me and my kitten heels.  The last few years the exams have been cursory.  My husband thought that once I wasn’t participating in research drugs she wasn’t really interested in me.

I have had a bad few weeks. Not enough walking or exercise due to bad winter.    I am never in pain except for when I fall.  My knee has been hurting me and it’s not a “fall” hurt.  I have been barely able to walk.  Well, I did turn a corner last Thursday, even though I did fall but I walked 11,500 steps.  Still, it’s been a real struggle.  I hate the way I am walking and looking.  I knew this time wasn’t going to be good.

I had the very sympathetic look – so sorry you are falling more often with the unspoken words what do you expect?

Bad news – we expect your symptoms to worsen in your already effected area but it appears things have changed and we need to look.  Yup, my left leg and my fingers are going.  And did I know that I have arthritis in my spine?  No, I didn’t and it looks like it might be getting worse?

Oh and the falling?  You may not want to hear this but maybe bilateral support?  As I was asking, can you say it in English?  My husband was saying, she’s not going for it.  Crutches!!!  Is she f’ing kidding??

And drugs?  She wants me to take the Bac more regularly.  I needed bloods for the Ampyra.  I hate needles.  Once a doctor told me he needed blood and I said needles?  He said, well I am not a vampire.  I thought this visit was going to be about other drugs.  Nope, she wants MRIs.  Luckily, with my change in insurance, they are only $75.  Last time, it took me almost two years to pay them off. Glutathione?  Complementary treatment.  I did get scrips for a new spectral leg though.

I also feel out of balance, literally and figuratively.  I thought I was finally getting to a place where I didn’t have to stress about buying “stuff”.  As I approach my milestone year, I wanted to stop settling.  I like being able to buy the Hourglass blush and highlighter.  I wanted to upgrade my car.  Material, superficial stuff I know.  And I know walking is more important.  I guess I just want to live as if this isn’t happening.

Oh, and the neurologist is not covered under my new insurance.  She wants to see me in about a month.  Look at it this way, I’ll be getting a larger tax refund next year.

So, what do I want to do about all this?  Fight back.  Restart and commit to the physical therapy, get in more walking (read lurching) and be more aggressive foodwise. Neuro says one of her patients gets good results but it’s not a good idea, just be moderate.  I am going with my plan and let’s see if I can have improvements by next time.  I am betting on me.  I hope to blog about it daily.  We’ll see.

Visiting the Doctor

Yes, sometimes I write about what’s going on condition-wise.  Tomorrow, I have a visit to the neurologist.  I haven’t been since July.  She likes to see me every three months.  I delayed for several reasons.  I thought I was  going to be an employee so I would have different insurance.  I was really hoping that by changing the way I eat, I would have positive change.  And frankly, I get tired and depressed hearing about the natural progression of the “disease”.  Last time, she told me I was more spiritual.  My unspoken response – “BS”

Well, tomorrow I am going back.  I am worse.  That’s another thing I don’t like, her denial that I am getting worse. It’s just natural.  One of the things we have been discussing is medication.  She has prescribed Ampyra for me but my former insurance didn’t cover it.  It costs $1300 – 1800 a month.  Now, I can get it for $60.  It works in 60% of the people.  I should be able to walk longer and faster.  I am terrified of drugs.  Also,  she can now prescribe meds that work on relapsing.  However, I have seen for some reason going that route only works for men.

In the meantime, I fell getting off subway on Thursday.  It’s getting harder and harder for me to commute.  My left leg is going.  On a positive note I should be able to get a better brace a.k.a. spectral leg for my right leg.  A new one may allow me to wear nicer shoes which will help my self – esteem.  Donna will know I hate, hate wearing shoes like the groundhog (inside reference) I don’t want to give up but struggling into work isn’t working for me. I like what I do but really don’t want to be there.  I took cabs last week except for the day I fell.  I can’t afford that.  Commutation already is hundreds a month.  I needed a cane to walk in my own tiny house this weekend.  Husband had a thought which may be valid.  I am a woman of a certain age and have been taking Estroven for years.  I forgot to buy some and have been without for a week.  Hot flashes and me don’t mix well.  Back on it so hopefully it will sort some of this out.  Also, my work stress has been through roof .  That’s a topic for another day.

Tomorrow we have a late appointment which means we see all the people who can’t even sit up being wheeled in, beyond depressing, the ghost of Christmas future.

Not optimistic.  Guess I can have a down day or so.

April Warrior Check In

Back for April:

How do I feel today – Perkier today than in a couple of weeks.  I have had a lot of stress, frustration and pressure around my work.  I think my husband is slipping.  He definitely did and now I have no trust.  And although today was the first day all week, I could walk freely,  I took a bad fall in the subway.  My husband was with me and he couldn’t stop it. People always bad mouth New Yorkers but a man helped my husband pick me up off the platform and people held the elevator for me and this was rush hour!  I walked more today than all week combined.  I thought I really hurt myself.  We will see.

What did you do for yourself today?

Well, I blogged,  had lunch with some friends.  I am not working tomorrow, resting, reading and doing fun things.

What did I eat today and how did it make me feel – Mixed, though mostly good.  Granola (homemade) for breakfast and snack,  orange,  uh two Lindt chocs,  sushi for dinner and half a slice of my husband’s pizza.  I feel it, gave me a headache

Did I exercise? What did I do? How did it feel – Still not going to the gym or Zumba.  Due to more falls back to square one with abs.  Have been on treadmill and Wii.  Need to find the original DVD because of the balance issues.

For whom or what are you grateful? What matters most in life?   Grateful that I didn’t seriously hurt myself in my fall.  Grateful for the kindness of strangers.  Friends and family, health are what matters most.

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.  Too heavy for me.

How long have I been treated with conventional medicine Not this month but I have appointment with doctor on Tuesday and am going to try for the Ampyra.  And yes,  I am going to do my best to eat right this month

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

What symptoms are most troublesome – Getting really slow and bad at walking and not being able to get on and off the train.

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. Rest and do art.  Eat right

Until next month.