walking

August Warrior Check In

Posted on by tresswann

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

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.

Another Doctor’s Visit and MC

Posted on by tresswann

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

Posted on by tresswann

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.

Here We Go Again or Not

Posted on by tresswann

Well, tonight we were supposed to be taking the youngest and his fiancee out to dinner to celebrate their engagement.  We couldn’t go to the engagement party as it was at his ex’s and I believe I wasn’t invited.  He is not allowed to drive and the kids said they could get him a ride.  I was really looking forward to celebrating this moment in family life.  I was reflecting while I was at work how lucky I was.  I never had children of my own and I have come to love his two and believe they love me.  I never thought I would have a moment like this.  We had made reservations at a very nice restaurant.  I wore my new Calvin Klein outfit – beige and white sheath with gold accents and a subtle gold shimmer shrug.  Ok, I had on the ugly shoes.  But  I did feel nice.  My manager told me she loved the dress and I looked thin in it.  Ironically, I am down to the same weight I was when my father died and he went to jail 12 years ago.  Funny what time does to bodies.  Then, everyone was worried about how thin and drawn I looked.  He used to worry when I visited him in jail that I looked like a junkie because I was drawn.  12 years forward and I have middle age splodge at the same weight.

I have been thinking he was off again for a few weeks.  Not in a big way but just enough.  He sounded wrong this afternoon on the phone and I didn’t want to believe that he would do something on such an important night.  Swore when I got in that all was OK.   I was going along with it until I asked him for change for the restaurant tip. I had given him a twenty last Friday for a hair cut he didn’t get, plus he had some more cash in case he needed to come pick me up at work.  Tonight he had $11 dollars.  I texted son and fiancee that dinner was cancelled, cancelled the restaurant too.  In the old days, I would have gone along with it.  I texted his sister and asked for help.  Specifically I told her he had been drinking again; I believe probation will come either tonight or tomorrow and he will breath positive.  He is not allowed to drink on probation and I have an order of protection that he can’t drink when he’s with me.  Almost three years ago we had a stay away order which I didn’t want.  If he violates, that goes back into effect.  I didn’t want it then and I don’t want it now.  I am NOT a victim.  As usual, sis has not come through.  When this stuff happens, he’s not her family, he’s mine.

I have learned that it’s useless to talk to him when he’s like this but this time I have taped some of it.  I missed the truly nasty bits.  He is saying he doesn’t care and when he is straight he says that is the problem, he doesn’t care when he drinks.  He has come so far to have this slip up.  We have been having fun and doing things together.

I am in much worse condition now than when this whole mess started.  He literally helps me out of the bath at night.  He ties my shoes for me.  He helps me come home from work when it’s late or hot or I am too fatigued.  We have been making a beautiful garden.  This week he had to put my hair up for me because I was too weak.  He liked my Paint Night painting.  We laughed I am better than a first grader in art but not a fifth grader.paint night June 2015

I can’t and won’t go back to the way we used to live.  I literally had to take my pocketbook into the bathroom with me if I got up in the middle of the night.

I have taken the weekend, Friday and Monday off.  This costs me as I am a consultant and don’t get paid.  We were going to redo my home office and had bought the paint.  We bought a new TV that could be used in here too.  Obviously, it’s not going to happen.

And I am devastated and heartbroken.  Not eating, so will go below my “junkie” weight.  Last time he was arrested, I lost 6 pounds in two days.  Guess I’ll do what I usually do to medicate myself – read novels, write and make things but no bubble baths.  I hate being resilient but guess it’s what saves me all the time.

Zombies, Dreams and Other Bumps in the Road

Posted on by tresswann

Disclaimer:  Life isn’t always about the disease or the condition.  When this journey started, I said I would not be confined or defined.  Well,  I started to let that happen.  I am fighting my way out of it.  I really dislike fighting.  I don’t like conflict.

Fact about me:  I am an avid, voracious and catholic reader.  However,  I don’t really do the supernatural or horror. Mysteries?  Yes.  Literature – smiles.

Disclosure:  My area of concentration at college was the synchretization of African religious beliefs in the colonial world.  I know, I know what was I thinking.  It is seriously interesting to me .  And that means I studied obeah, santeria, macumba, voudon.  But so not into zombies and if you really look at voodoo that’s not what it’s really about.

About conflict:  Work has been in turmoil for awhile.   I discovered earlier this year that my group head does not believe I am qualified to be a trainer!  It’s my job and I have been doing it with this organization for 15 years   11 years ago this month the training department in North America was disbanded as it was considered an expense not an investment and I was let go.  I was hired as a corporate training manager for a major US retail chain.  6 months later, I was asked back to finish some work.  So I did both jobs.  When the retailer went into bankruptcy, they were thrilled and I started working more hours, lots and lots.  Even now I average over 40 (billable) hours a week, have trained literally hundreds of people and created numerous successful programs.  So d’uh?  When I came back simplistically because of the expense thing they couldn’t call me training.  There are also corporate cultural and political issues so I do not identify there as a trainer because I seriously love what I do and yes, it pays well.  Also,  I work in I.T.  And am not technical.  I am the translator.  For those of you of a certain age,  I am the Mikey likes it of the department – if I understand and can do it, anyone can!  She says I told her I wasn’t a trainer.  Uh,  I made a  comment on 2nd day she was here!  In fact, one year they called me BUST – business user services/ testing!  My immediate manager and my former manager are moving to the other side of the business.  I was told that they didn’t know who my supervisor was going to be or where I would be located.  Unsettling.  And you know stress goes right to my legs and it’s not good.

Ok stage has been set.

Sunday night I dreamt that this woman (group head)  was a zombie!  She was on the ground disabled.  I was there and someone had given me a HUGE cartoon-like Chinese cleaver.  In my real life I have problems literally killing flies.  So,  I am holding this cleaver and there are people standing around me telling me I need to cut her head off.  It’s easy, the cleaver is big enough, it will be a clean cut.  I hesitate but they tell me I need to and can.  I visualize a dressed chicken. At the last minute  I smash her face.  There’s blood all over her face, rivers of it.  Then she starts to get up and I wake up screaming.

In the real world, I don’t talk to her or interact with her.  And I don’t do blood.

Cut to next day,  I go in and get a note from my former manager, there is a training job open.  Oh, I am not an employee. I am freaking and bouncing off the walls.  Tell husband to be ready and get me.  I literally stumble in.

For now, all is good.  It may even work out.  And I am walking really well.  I have had some great meetings and interactions.  It will be alright.  I am beginning to feel like me, the old confident, creative me!

But what did that dream mean?  Why did I have it then?

Let’s go to the Videotape!

Posted on by tresswann

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,