leg braces

April 2016 Check In

Posted on by tresswann

How did I feel this past Month?

March definitely was a combination of the lion and the lamb.  I am actively looking for work.  I fear that my age and infirmity are preventing me from getting a job.  Yes, I try not to focus on it but it is the elephant in the room.  Sometimes, I say that too.  Then, my Jawbone hasn’t been working so even though I am not walking enough I can’t tell.  I am deteriorating.  No one likes to hear it or see it.  I fell three times.  The last was a week ago and I really hurt my left hand.

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.  I am reconnecting with the creative  bits of me, a little writing, a little art.  Decoupage again.  Something I started to do in 7th grade.  I was always good at it.  And I am starting to take some glasses.  It’s both an outlet and a way to meet people.

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

More smoothies.  A little off the rails with gluten due to holiday.  And a little more meat.  Getting back on track.

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

More time in the gym.  I am really liking it!

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

Faith helps lots.  My friends are awesome.  Some came into my life, some left.  The ones that are here are my rocks.  My stepsons continue to amaze me with their love and support.

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

A higher purpose is kinda grandiose.  I stand by fighting for what’s right.  Hopefully, others can benefit.  Living with integrity and never ever giving up.

Conventional medicine  Still just Ampyra and Baclufen

Symptoms – Hands are getting weaker and my balance is off.  My fingers are going white and numb which is freaking scary.  My right hand turns purple sometimes.

What symptoms are most troublesome  – Independence and mobility.  I also have been falling more.  Part of it I know is  stress.  But the rest of the time, it’s balance. And the fingers!

Do I blame myself for things – Yes, I am still believing it’s food, stress and exercise.

How is stress level?  Well, I am  still not working. So it’s getting to me.  I am able  to sleep later though.  I’d like to wake between 6 & 7 in the morning.

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

Faith, food, exercise.  Creative work. Never give up!!

Resiliency

Posted on by tresswann

I have been without work for 4 months today.

On the positive side, I have been able to have some much needed rest.  I haven’t had to wake up at 4 a.m. ish since then.   My body clock has adjusted or righted itself to a 6:30 a.m. – 7 a.m. rise.  I go to bed around 10.  Finally, after years like a normal person.    I go to the gym.  I eat healthy food – read I have not gained weight at home.

On the negative side, I walk less.  I try but most days can’t get in near the amount of walking I did when I worked.  I would have thought I would have been improving significantly.  I am stressed but in a different way.  I need and want to work.

My walking has impacted my job search.  I know the first interview I went on was ageism and the “disability”.  They couldn’t get me out of there fast enough.  Other ones have been more subtle.  I had two companies that I went through several phone interviews.  I had to get on a shuttle bus for one.  When I was well I couldn’t get in those.  Ask anyone who ever had to take an airport shuttle with me.  The second one was the same day as the shuttle one.  I wobbled.  I need to use the cane.  It is stylish.  I try to wear non cloddy oxfords.  I wear loose pants over the spectral leg.  I disclaim that when I worked I took two subways everyday!  I work into the conversation how many steps I walk in a day – over 8,000.  This is seriously more than most “well” people do.

I have explored some opportunities on Long Island where I live.  The company recruiters have been upfront with me.  I am not cheap.  However, I have lots of experience and am excellent at what I do.  I had several conversations with a major national company out here that would have met my salary requirements.  I didn’t have to walk as my experience in and of itself was kind of threatening.  I was OK .  I made it through phone interviews to an in person assessment.  One person saw me with the cane.  And I walked well!  We had a really great conversation.  I had the experience and the approach they wanted.  This company told me when they made the initial call that they raised the salary because they knew with my experience, it was expected.  I received the standard thanks but no thanks e-mail today. I am finding it really hard to take.  My husband says it wasn’t my walking  but the expense.  I don’t know.  I usually believe everything happens for a reason.  Numerous times in the past I have not been offered jobs that I wanted and maybe should have had and it all worked out.  Sometimes, I didn’t see it at the time but later I did, including two jobs at the World Trade Center where in all  likelihood and seriousness, I would have died.

Finding work has always been hard for me.  This time has been easier for me in a certain way.  I almost always have something in the pipeline.  Years ago,  I was almost always one of two and almost always came in 2nd.  I don’t know where I am now.  Last time I had a termination like this it took me almost ten years to get back to where I was.   I don’t have the time, money or energy for that.

Normally,  I take these setbacks in stride. I was relatively calm four months ago.  Today I wept.  I almost never cry about anything.  My husband  was lost.  I am the strong one.  I don’t get blue.  I snap back.  It’s freaking hard.

It looks like I need to head back into NY.  Like Willie Sutton said, “that’s where the money is.”  I was liking sleeping like a normal person.

I am trying to find that resilience.  I know I am a resilient personality.  It’s hard.  It takes energy.  It takes faith..  If I don’t use the cane, I’ll lurch more.  I don’t know how else to address this.  My mind is fine. I feel “normal”  until I stand up.  I forget my physical limitations.  For the past month or so, in my dreams I find myself walking.  I wake and am crushed.

Digging down to get out.

Why Did the Chicken Cross the Road?

Posted on by tresswann

Why did the chicken cross the road?

Good question.

Right after Thanksgiving, my husband called out to me to come look out the front window.  “There’s something odd out here.  I think it’s a turkey.”

“Really?”  asks I.  This is a man who has had issues in the past. So I gimp out to the front.  I see nothing.  This is not unusual.  I was the child who always finally agreed that she finally saw the constellation or the bride coming out the church door rather than enduring “See?  See?”   I did see JFK on the Belt Parkway though. I am not quick.

“no, no, don’t you see that black thing.”

And there against the fence across the street was a black chicken.

And then, the chicken crossed the road!  Please understand, we live in a suburban area.  The bane of our existence is a used car lot next door to us that houses a massage parlor from time to time.  Across the street on the corner is a former gambling hall.  I was reading news headlines one day at work that the newly discovered bomb plot by either the Gambinos or the Gallos was directed at that building.  The Feds closed that one down.  And wait for it; we had prostitution there, too!  The house that the chicken bolted from we refer to as Sandford and Son.  A  seriously collects junk when he is not “away”.  Also, think from time to time, “junk” is sold from there.  Uh, cars pulling up with engines running and people running in and out?  And the SWAT team was literally there about three years ago.  Police frequent the house (more on that later).  Sometimes, on a weekend we have copter hovering over and doing a sweep.  No, it wasn’t like this when we moved in and who would want to buy this?

Back to the chicken who has crossed the road and is now in our yard.  Now besides the organized and unorganized crime, we also have woods behind us.  So, we have  a fox, opossums, feral cats,  huge raccoons and dogs.  T says “Do you think it belongs across the road?”  It crosses the road and is pecking at the fence.   “yes, why not?”

“Do you think I should go over and tell A?”

Me:  “Yes, I do not want to wake to chicken guts on the front step.”  We feed the ferals and as a consequence birds, raccoons, Fox and possums.  “We do not need to provide gourmet treats for the ‘hood.”

T trundles over and is gone for awhile.

A admits chicken ownership and is stunned that chicken crossed the road.  He has more than one.  It’s a menagerie over there.  In addition to the pitbull that pinned me in the car one day, there is a cat that we feed.  We call him AC for A’s cat.  We discovered this one afternoon when T & A were talking and AC strolled up and ate the food we leave for him.  A says “Oh, my cat never eats dry food at home!”  Uh, why should he, when he eats with us?  There is a macaw and a little dog, too.

So chicken custody determined, the guys begin to chat.  A discloses he’s on probation for DV.  Coincidence!  T just finished.  I did say more on the police later.  If you have been reading me for awhile you may believe that T is a devoted and caring spouse.  He is when he is not drinking.  He’s an alcoholic.  He is not allowed to drink in front of me.  Easier said than done, no?  So, he has been arrested here about 16 times, no joke.  This means police have been here at least 20!  It’s a small block, hidden away.  No one really knows how to get here except for the precinct.  In fact, one night they were over and asked, “Weren’t we here earlier today?”  No, they were across the street.  Fair disclaimer, T ended up in DV because they couldn’t get him on alcohol any other way.  An ADA even told me once, if we could get him in a car.  He has no license so that’s a non-starter.  The DV is the alcoholism.  It distorts people.  The cops who constantly arrested him realized that when sober, he is wonderful.  Over the years, they have liked the work he has done on the house.  “Wow, you redid the floor!”  We have an almost cordial relationship with them.  And we have been to court so often that we are personally greeted, and people look to me for advice.  Luckily, that is all over.

T was on probation for three years and concluded it successfully.  So, he is in a position to advise A and was giving him helpful hints and tips.  We believe it will be the same PO that T had. The first time she came over the house was just after dinner with the kids.  In fact, when there was a knock on the door, we thought one of them had forgotten something.  I had made stuffed pork chops and used rice wine in the stuffing and had sprinkled it because it was dry.  They breathed him and said he was positive.  We later learned that the amount would not have been recognized if he had been driving.  We didn’t know and were terrorized.  They told me that me or the kids would not know if he had been drinking.  So, not right.  We always know.  We have lived with it. And as I said at the time did they really think that having had him arrested so many times I would tolerate it and not call? I was told I could no longer use cooking wine and they made me dump my almost full bottle out.  Then they trashed my house searching for drugs and alcohol.  When they went through my mother’s antique petit-point purse, I lost it.    We have a tortoise shell cat that we took in from outside.  Of course, the cats are freaking out with these strange, hostile people in the house.  Miss Mollie runs out to hide someplace else.  Officer N shouts, “Is that a raccoon?”

Their home visits were fine after that except for the time they came after 10 p.m. when I was getting up at 4 a.m.  They have come over when we have been drinking coffee on a Saturday afternoon or making Easter chocolates!  And we  had no luck coaching Miss Mollie on how to be a raccoon.

Let’s be clear.   I never considered myself a victim, ever.  I called precinct so that I would not be.  Everyone wanted to fit me into a mold just like they do with this disease/condition.  When I work,  I make very good money so I am not dependent on a man.  The house is mine so I can’t be thrown out of it.  I was always being offered help to get a job and find housing.  Where I did feel like a victim was in the hands of probation.  Even though T doesn’t drive or work, he had to be at places that are very difficult to get to without a car.  There were also huge fees that in essence I was hostage to pay.  I was always told I didn’t have to and he would be jailed.  Does this make sense?  I was told I could give him the cash (they only accept cash) and transportation cash.  Uh, especially in the beginning, money was a trigger!  The situation is designed for people to fail and generate revenue for the county.  We had to discontinue our marriage counseling as we were told it was not allowed.  The program he was in was ridiculous and meaningless, no curriculum.  He was told if it was up to them he would not be allowed to live with me.  The people in his “class” terrified both of us.  There was the guy who had thrown his girlfriend out of the car when it was moving and one who said when accused of choking his girlfriend ” But I stopped when she turned blue!”  T successfully concluded the program.

I refuse to be considered a victim with my condition either. I will not conform to people’s expectations.  The child is father of the man.  My mother used to tell me that I conformed to non-conformity.  It’s turned out to be a good thing.  I don’t buy into the whole incurable thing.  As I have said before, I am not going to tout the advantages and delights of motorized scooters.  I hate the spectral leg.  I hate orthopedic looking shoes.  I use funky walking sticks.  And no, I am not going to apply for disability.  I do not walk well.  I am not disabled.  I am able just not as able in certain areas.  By the way when I am working I literally walk or stumble more than the average American! Yes, 8 – 12,000 steps a day.

So, husband is  giving A advice.  This is going to be interesting as I believe she is not as strong as I am and there is a language barrier as well.  And we believe  it will be the same P.O.s that used to come to us.  We would love to be a fly on the wall as they experience the menagerie, chickens included.

Why did the chicken cross the road?  Goes to show that we are more connected than we think.  And the chicken keeps on crossing the road.

 

February 2016 Check In

Posted on by tresswann

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.

Lotteries and Windfalls

Posted on by tresswann

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.

Still Fighting – Zumba

Posted on by tresswann

Last night I went to Zumba.  I have been going regularly for over five years with the same instructor and almost the same group.  I love this group.  It’s a microcosm of life the way I always envisioned it.  There are women of all sizes, shapes, weights, colors, races.  There are even deaf-mutes.  They feel the vibration of the music.  We all have fun.

The first time I went was with a friend who wanted to go to a session at the library.  It was downstairs and I thought I wouldn’t be able to do it but when along for the ride.  She couldn’t do it and I could.  Going upstairs was just the tiniest bit difficult.

The first season I was able to dance in the front.  The music and the dancing connect me with my childhood and my mother.  As I have said before in my house, we danced!  And the music is Caribbean.  I feel it in my heart and bones.  I was finally old enough and secure enough to  just be and do it!  At the end of the first year one of the women asked me if I was recovering from a stroke.

I had to change over the years to being by a wall for stability and balance.  Then in 2012 I had to start wearing the spectral leg.

Two years ago the venue changed.  I had to cross four lanes of traffic without a light.  I missed most of the first winter till it became light.  Now, I need help.  Last year with all the snow and ice, I missed again.

The sessions only run from September to June.  I did most of the classes in the fall.  December there were only two classes.  It started again last week.  It’s now in a gym and I forgot the sliders for my shoes.  The next session I had hurt my back and couldn’t make it.  Last night she started off by playing one of my favorite old songs.  This used to be a no brainer.  I could barely do it!  And then more of the music that sings to me.  What’s horrible about this is my mind  doesn’t realize I can’t do it.  I feel it and then my body is so not doing it.  Yesterday, I used our treadmill for 10 minutes and then went to the gym.  A newer person told me I was doing    great last night.  To me I was not.

So, what’s next?

Well, I am back on track pretty much food-wise.  Also, amped up the steps so it was a little better.

I am angry.  I refuse to continue down a deteriorating  path.  I am going to fight harder – better food, better exercise, better rest.

My goal?  Do a full class by spring.

Keep on dancing!

Evaluating, Instincts and Perspective

Posted on by tresswann

It’s been a hard few months for me.  Particularly, the last few weeks.  I very rarely admit it but I have a streak of a workaholic in me.  Years ago, one of my friends told me I was the same as her except I did the extra work at home in the bathtub and in my bunny slippers.  My assistant used to go “Grrr, I see you wrote this in the bath again.”  That situation ended badly.  I was in that job for nearly 9 years.  I increased their business.  I literally made myself physically ill and as I have mentioned the roots of my present condition lie there.  I went to Asia on business when I could barely talk or breathe.  Forget experiencing Asian cuisine in Asia; every place I went they poured soup and tea down my throat.  Here’s what I did:  I left Taiwan at 11 o’clock in the morning, landed in LA 11 a.m. the same morning and worked till 11 p.m.  The men always stopped in Hawaii with their wives.  I  flew home to NY and collapsed in JC Penney.  Several years later I was let go from that company.  It was awful.  I had invested too much of myself.  I was left without myself.  I was severely depressed.  I got married.  Yes, I know.  And that made everything so much worse.  I was unemployed or under employed for 10 years and then I got this job.  Financially, I was back.  The first four years as an employee were great.  I left it at the office.  I worked late once or twice.  There was a downsizing and I was let go.  I said “Thank you.  Summer on the beach with shells in my hair.”  My condition manifested itself for the first time that summer and we put it down to stress and lack of activity.  Working, I walked miles a day, literally.

Cut to the present:  My life has been out of control and out of balance.  I went back as a part time consultant.  It was never really part time.  I joke the reason I was approved for my mortgage working part time was a major project went live the month they looked at my financials and I was doing over 40 hours a week.  Well, once I went back full time I started at around 37.5 a week.  I told my manager when I started back that  I knew hw he was and it would be more.  He swore to me I could be out the door by 4:30.  Well, that lasted a few weeks when I was told they needed more time.  Our agreement was that I could do it at home.  For years, I have done nights and weekends. 2007 – 2008 averaging 50 hours a week.  Note the word average.  Once this condition began to impact me I worked more and more from the house.   I work in an IT department so it’s relatively technologically advanced.  I laugh as every other Friday from home I am in a meeting with New York, New Jersey, London and Ireland.  This year even though I worked from the house I have been averaging closer to 45 hours a week with a lot of weeks 50 – 60.  Yes,   I do bill by the hour.

Recently, the two people I have always worked with except for a hellish 6 months were reorganized out of my area.  First hint – no one knew what to do with me and I heard unofficially I was going back to Hell.

In the interim, the group head starting signing my time sheets August 1.  I worked 48 hours one week to deliver a major project.  She said it was over time.  I said you owe me a lot of money then.  Upshot, not allowed to do more than 40.  Okay, I can live with that.

I work remotely on Friday and have done so for a few years or very, very short Fridays in the office.  It  is too dangerous for me to commute with the weekenders and I do have fatigue.  I have a doctor’s note.  I usually work longer on a Friday as I don’t have to commute.  The doctor wrote me a letter not to work when it’s 85.  This hurts as remember, summer on the beach with shells in my hair.  She apparently is not honoring this.  This means unless  I come in and jeopardize myself I lose a week’s pay a month.

A friend texts me Thursday night that the company has posted a job opening for Learning and Development.  I look it has been written to exclude me – must be able to sit or stand for long periods.

So, I  find myself in the same position I was over 20 years ago.  I did it again.  I put my heart and soul into this.  I cared. I did their work at the expense of my life.  They would call it scope creep at my job.   I can’t believe I bought into it.

I used to work in the garment industry and was laid off all the time.  I just had a sixth sense as to when it was going to happen plus someone would tip me off, too.  The only time that didn’t happen was when I was let go from my short interim position while I was doing little part time for the bank.  For the last three years,  I haven’t been feeling right there.  I have very positive moments and very positive reviews.  However,  this morning I said to myself “Face the facts.  You are going and sooner rather than later.”  I already had started taking things home.  However, when my credentials/capabilities were questioned. I brought in framed copies of my certificates.

I find myself feeling sad, nervous and betrayed.  I have to hold onto the belief that someone will hire me on suitable terms even though I am technically old, limp and use a cane.

I am resilient.  I always try and see the upside.  So being home for four days has been a blessing.  I am getting to catch up on my life.  I spoke to three friends on the phone yesterday, a luxury.  One was one of my exes (yes me and the eternal exes) and he had been with me for part of the first time.

I am approaching a milestone and am frighteningly aware of my mortality.  But this is an opportunity for new horizons and new possibilities as I approach this.

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.

Teeth and Age

Posted on by tresswann

I read a long time ago that if you dreamt of losing your teeth, you were dreaming about age.  In a non-coincidence just before my 30th birthday I dreamt all my teeth fell out.  Now I am older and definitely have teeth issues.  In fact, I believe teeth are at the root (Ha, not ha) of my present predicament.  The hole in my mouth.  Recently, the bridge and crown covering that rogue tooth was removed.  The remainder has to go but I have been trying to hold off as I have an important meeting with the head of my company July 31.  I need to be able to talk and look healthy.   And yes,  my health is important but if I have no job or a miserable one, my health will also be impacted negatively.

Today, I took our 12 year old niece to a bracelet making class for her birthday.  Just the two of us at an adult class.  She told me how she feared 13.  It’s the end of childhood and she will be a teenager.  A child after my own heart as she has 11 months to go.  Today is also the day of my high school picnic. SUSAN GRADEvery year on this weekend in July, my high school which closed in the 80’s has an all class picnic.  I grew up in Levittown and as I explained to my niece not only were there people in your class but whole families you grew up with.  I literally was in the same class with one boy from second grade through my first year of college  I went two years and then stopped.Susan and Jerry Dumas July 2012  I find I revert to high school and try to disappear. I was quiet and odd.  Now I am louder and odd.  I explained to my niece when I was at school being smart was not looked up to.   I also hate looking the way I do.  The first year I went without the brace.  The second year I had to.  Now, I have to use a cane.  I can’t STAND the OMG what happened to you!!! And the pity.  Don’t tell me it’s in my mind either.  Because of mobility, it’s hard for me to get up and move around.  The first year we went my husband was anxious as he thought he wouldn’t know anyone.  He is younger than me and grew up several towns over.  You can tell where this is going.  He recognized more people than I did.  Recognize is relative.  We are older and balder and broader and greyer. Me,  I am the gimpiest next to the guy that my husband knew who lost his leg in a motorcycle accident. So,  when I think I see someone I recognize I can’t walk quickly enough to talk to them.  And here’s another reason I don’t go anymore, every year after the picnic someone dies!  First year someone got run over by a cab, 2nd year a guy who grew up behind me was hit by a garbage truck, last year someone from my class was killed by a wrong way driver.  Why tempt fate?

So jewelry with niece, leather wrap bracelet, nicer than hippie ones, safer than picnic.  However, all the nostalgia and seeing things again through 12 year old eyes.  We leave the class and part of the rogue tooth crumbles and comes out.  Irony and age.  Now I have another hole in my mouth, more poison loose in my body.  A stunning reminder of aging on a reunion day.

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.