Disabilities, Limitations or Issues

I am having problems with the whole disability concept.  I know I really can’t walk well anymore.  Actually, I usually forget until I try to stand or move.  I told my doctor a few weeks ago that I think and feel I am me until I try and stand.  Her response was that I am me.  No, this is so not me.

I have been out of work for a year. People have been saying to me for much longer than that, that I should go on disability.  Why?  I am not disabled. I just do not walk well or fast.  But especially now when it is clear that I have lost out on jobs because of my mobility issues, the disability question is raising its ugly little head again.

In the past when I didn’t have what I call a job-job, I temped or worked  retail.  Those avenues are closed to me now primarily due to the mobility issues.  So, I can’t supplement my lack of income.  It’s getting serious as I am living off my life savings which were not much to begin with.  Most of the time, mobility should not be a factor in what I do.  I am a technical trainer by trade.  I show people how to use technology to do their jobs.  In addition to the mobility, I am a woman of a certain age (double whammy); I was at my last position for 15 years; and I have now been without gainful employment for a year.

Now, I am not going down without a fight.  I have either been blessed or cursed with grit and resilience.  I consulted a career counselor and her advice was to network in my professional associations.  I might be able to find out what other factors might be impeding me from working and of course, I might be able to network myself into a job.

My doctor told me to apply for the disability. This will not pay my mortgage let alone anything else.

So, I am fighting back.

Did you know that October is Employer Disability Awareness Month?  Who knew!  Through the HR society which I recently joined, there was a session this week on Disability Etiquette.  My plan?  Hike my disabled self with seasonally coordinated cane there and interact.  What a perfect opportunity! Wrong!  The attendees definitely did not want to deal.

However, the presentation was very thorough and informative.  He raised the issue that we are people, not disabilities.  In fact, the presenter stressed that we are people that have some limitations or issues.  I love, love this way of identification.  It makes so much sense.  I do usually refer to myself as someone with mobility issues.  I have always maintained I was trendy and ahead of the curve.

I did have a conversation with someone in the elevator on the way out.  She disclosed she had RA.  She loved my positive attitude.  Being negative takes too much time and energy.

And yes, I came up with another Plan B based on this meeting.

And with that group of people, who had the limitations and/or issues?  Me? Or them?

Perceptions, Expectations and Mammos

It’s  odd the way the brain works .

I get my mammogram religiously every year.  I had my very first one when I wasn’t working and went to a mobile van parked at Pathmark.  This year I have been running late on everything.  I saw the gynecologist in June.  I usually have mammo midMarch.  Due to my unemployment, I can no longer go to the lab I have been going to for about 20 years. I have been delaying, thinking I’ll get a job and different insurance  .  I had a kick in the butt because I have to go off this medical plan and go to another for two months.  Okay, I am going to name names.  When I was in high school, my grandmother had to go to Zwanger for radiation.  At that time, it was Dr. Zwanger and not the megalith it evolved into.  My grandmother hated him which was an unusual state for her.  As a result, I have carried a bias against Zwanger.   I have had MRIs and xrays there because there was no other option.  It’s been alright. Now, as I said, I have been going to Nassau Radiologic for about 20 years.   At one time, they were just about the only game in town.  You literally had to schedule 4- 6 months in advance.

After you checked in at the main window, you waited to be called in.  Then someone came took you back and you went into a pretty bare changing room.  It had louvred doors that were not full, a wood bench and mirror, a collection of plastic bags and two trash receptacles, one for the used gowns.  Let’s use the word gown lightly. It was a cape/poncho.  I am personally comfortable with my body and have annoyed my acupuncturist and the odd gynecologist by not really using the gown.  Naked is naked, right?  Well, in this poncho/cape thing which you always had to take off anyway, I felt the “girls” were always hanging out anyway.  It used to be like a scene from a demented refugee movie.  There were all these half-dressed, frightened women (and don’t say you are not) sitting around with plastic bags waiting to be called in.  The actual technicians were always, always great.  Until three years ago, you also had to put the thing back on, carry your plastic bag out and wait to be told if you needed additional shots.  I have dense “girls”.  I picture them flopping around and going “D’uhh?!”  Usually, I had to have additional but still…

They changed three years or so back.  Instead of going to the main window, there was a little desk next to the elevator and this woman would bark at you.  Look, if you’ve been doing the same thing annually at minimum ( many of us have had more frequent visits)  your feet just do the walking.  “Stop!  Didn’t I tell you to come here!”  What also changed was waiting after the first  pictures.  You could leave the refugee area and wait at home for the all clear or have to go back in and repeat.

Yesterday at Zwanger, a real changing room and a real full length robe with a tie, one of those new reusable shopping bags and a real hamper!  The whole experience was nicer if you can describe a mammo as nice.  No waiting and I received a notification today that the “dense” girls are OK but still dense.

So here we go.  This place is less than 3 miles from my  house.  Nassau is nearly 30! I could have been going here for a decade.  I let old perceptions and expectations limit me.  My perceptions and expectations have also changed.   I need to think and see what else can and should.

And get that mammo!


Doctors, Drugs, Disability

Back at the doctor’s Friday.  I was hoping for her to be able to get

Ocrelizumab.  It’s not yet available.    There is a similar drug but it is not approved for my disease:


It’s a 5 hour infusion and then in two weeks, another one.  Every 6 months.  So, here’s the thing, side effects.  I could get shortness of breath and they slow the drug.  I could get more colds and infections.  Long term use might lead to cancer.  And of course, death though rare.  I HATE  needles let alone I.V.s.  However, I think I am going to suck it up and try.  I looked it up and it’s chemotherapy.  Kinda  scary.  Also, it’s been around for years.  The problem is insurance may not pay as it’s off label so I may have to wait till next year for the Opera.   Has anyone used this?  What do you think?


The other thing is Biotin.  I had obtained it just before I was let go and at $148 a month.  It wasn’t happening.  There is a new source and it will cost $60 a month.  It’s worth a try – $2 a day. Apparently, this looks good. Anyone use it?


Now there’s other things going on.  I have had a hard week. I got rejected again for a job.  It’s one for which I should have been a contender.  It was exactly what I used to do.  I had to create two presentations for it.  I was notified late on Friday for Monday.  It was my birthday and New Year’s dinner, too.  I put in hours and it was good.  No go.    It was across the street from where I was and it was difficult for me to walk there.

So, at this point, it appears that I am no longer going to be able to work in corporate America again.  I have hit the trifecta – woman, older, disabled.  This is so wrong.  I can’t even begin to address this.


The doctor is also in NYC.  I couldn’t do it without my husband.

I have collapsed recently in the bedroom without hurting myself but scary.  My balance has also been wobbly.  The doctor says that’s due to my weakness, not the drug I take.  My fingers are weaker,  My walking has gotten worse.  My theory?  Not going out to work every day has taken its toll despite the gym.  And she agrees, stress of not having work is negatively impacting me.  She’s finally admitting stress can be a factor.  I deal with extraordinary stress.  I have just started counseling.  In terms of stress and we are only up to 2004, she thinks it’s a lot.

I asked my neurologist about going out on disability.  I expected her to pooh pooh it.  NOT!  She said who deserved it more? I have worked for decades.  I don’t want to do this. I am going to have to think about this.

On the upside, my brain is fine.  She says that will be fine and she’s never seen it change. See, when I am sitting down I feel like me.  She tells me this is me.  I think NOT!!

I need to reflect and move forward.

Perception and Judgement

Background: We live on a tiny street.  It’s a dead end.  There are currently three occupied houses.  There is a house that has been foreclosed and abandoned at the end for around 8 years.  There used to be a house next to ours but it was razed and a used car lot expanded.  Said car lot included a massage parlor.  Right! We are off the service road of a major highway.  On the other corner there is a building that used to be a Sons of Italy hall.  One day when I was at work I saw a headline on the news.  Either the Gallos or Gambinos were stopped in a bomb plot because the hall wasn’t cutting them in on the illegal gambling.  The Feds closed it down.  It then became a computer place.  Well, not really.  It and the car lot massage parlor were closed for prostitution.  We thought we still had the illegal gambling.

Now, as I have blogged, I have had problems with my husband who when he is sober is seriously the best people.  However, when he’s not….  I have had the police here roughly about 20 times.  Once the cops said, “Weren’t we here already today?”  No, that was across the street. So, across the street, they have come but not as often.  However, a few years ago, they had a SWAT Team.  The one neighbor, Vinny, who may be the only normal family on the block would do nothing about the car lot.  No, don’t mess with the Mafia.  The same response when our garbage isn’t picked up or our street plowed.  We approached him about the massage parlor.  Same answer.  Man, you have a 12 year old daughter, at the time.  “We have a dog.”  The SWAT team house had homeless friends and asked Vinny if they could stay in the abandoned house next to him.  No problem.  Uh? Squatters?  My husband went ballistic and had that shut down.

Now, SWAT team house has a renter.  He is white but has dreads and piercings.  If you have read me, he is the owner of the chicken that crossed the road.

We have woods behind us.  Vinny and our family feed feral cats.  We both have taken in some of them.  There’s been a new sleek one that we have been feeding. He thinks he lives at our house and literally knocks on the door to be fed.  We recently found out that it is Dread’s aka Greg’s cat, aptly named Mr. Cat.

Vinny’s daughter doesn’t go to school in our neighborhood.  The schools are not bad but mixed.  She recently changed to a bus.  Vinny stopped and asked my husband about Greg.  He saw him walking around and was concerned.  He was looking for Mr. Cat!  He has a decent job and works every day!  Vinny asked my husband to watch for his daughter off the bus.

So, he’s not concerned about prostitution, illegal gambling,  squatters, police visits but a white guy with dreads?

Reality, perception and judgement.

Before we get started on our Thirsty Thu

Before we get started on our Thirsty Thursday recipes, let’s learn how to make the best tea we can. The following is courtesy of Harney and Sons
Brewing Instructions
The Correct Way to Brew Tea
1. Preheat a teapot by pouring boiling water into it, raising the temperature of the pot to 180°F (82°C).
2. Discard the water. In a teapot holding up to 6 cups (1.5 liters), add 1 teaspoon (5g) of loose tea for each cup of tea you’re brewing. For pots that hold up to 12 cups (3 liters), add an extra teaspoon of tea for the pot.
3. Pour fresh boiling water over the tea or tea bag. This super-saturates the tea, allowing the perfect extraction of the flavor.
4. For black tea, the water temperature should be 210°F (99°C), just under the boiling point. Let the tea steep for a full 5 minutes. Herb teas also require near boiling water and should be steeped for 5 minutes. For green tea, use water below the boiling point the temperature should be about 180° to 185°F (82 to 85°C). Steep for 3 minutes.
5. Pour the tea through a strainer into the cups.
Note: These are general guidelines. If your tea container has brewing instructions I would follow those as they are probably ideal for that specific tea.
There’s a favorite saying in the tea world: Water is the mother of tea.
Before you start your tea kettle, know that the chlorine and other chemicals in ordinary tap water will unfavorably affect the taste of these teas. Always use filtered water when tasting teas, unless you are fortunate enough to live near a spring; spring water is ideal.
Brewing Temperature
Different teas require different temperatures to fully release their flavors; generally speaking, the darker the tea, the hotter the water needed. Water boils at 212° Fahrenheit, but that heat will scorch white and green teas. Their more delicate flavors best emerge between 160 and 190° Fahrenheit. Most of the finest black teas taste best brewed at only 205° Fahrenheit or so. You can buy electric water-dispensing pots, machines that heat water to precise temperatures. These machines are not necessary; just insert an instant-read thermometer into the spout of your kettle to gauge your water temperature before pouring the water over the leaves. Sometimes I give a range rather than a precise temperature; as with brewing time, the exact temperature can vary with each batch of tea. Experiment to see what works best.
Brewing Time
Different teas brew best for different lengths of time; the darker the tea, the longer the brewing time. My brewing times (see above) are offered as guidelines only, as every tea is different; My box of Lung Ching may need three minutes, while yours may need only two. Observing both the tea liquor and body will help you gauge whether you have brewed your tea for the correct amount of time.
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Pasted from <https://www.harney.com/brewing-instructions/>

Out of Work Summers – Beach and Bleach

I am writing this from my laptop in the backyard.  I am sitting in what we call our screen house so I am protected from the sun.  There is a delightful breeze.  I have been unemployed for 9 months; second longest period so far.

In periods past, I would be just returning from the beach.  Due to this condition that has been closed to me for now.  I can no longer tolerate the heat nor can I walk on the beach.  I used to find solace, peace and joy at the beach especially when I was out of work.

I started my unemployment  career in the garment district.  I went in and out.  Then I ended up at a major company and wa there for almost 9 years.  I loved what I did and was excellent at it.  The 90’s happened as did a merger.  I was treated in a textbook/case study manner.  I stopped getting invited to meetings.  My work was taken away from me.  I was let go with severance.  It was the end of May.  All my associates were let go after me.  I was grateful for this as it angered me and I would have been fired.  They let go a woman who had been there for almost 20 years.  She was paid less than what I used to expense for lunch and dinners weekly.  Ah, that expense account.  For nearly 10 more years, I didn’t make as much as my expense account.  I’d clear out my files and cry as I shredded the expense stubs that were larger than my current pay stubs.

When I lost that job (and I hate that term, I didn’t lose it, it was taken away from me) I was depleted.  I headed to the beach and spent so much time there my naturally dark hair bleached.  I also decided that I was going into business for myself.  I wanted a company that would never treat people like my low paid friend that way.  I have a great sense of what  is going to be popular fashion-wise and I had made connections literally all over the world.  I reached out to my network and received enormous support. What can I say? Great idea.  Wrong time.  Poor capitalization.  I showed merchandise to Brooks Brothers and was told it was too forward; try Paul Stuart. I had an existing relationship with Paul Stuart and was told it was too conservative; try Brooks Brothers.

I became seriously depressed and got married.  Bad, bad choice.  It was not convenient.  I made more money on unemployment than he did working.

I fought my way out and up and ended up part time at a financial services firm.  I was over a thousand hours and forced  to take nine weeks unpaid leave.  It was summer.  I hit the beach and the want ads.  Again, I bleached out.  I had an interview with a company that wanted someone who could do what had been done for my fashion employer.  Uh, that was me.  I came up with a portfolio of designs to show them, arguing the whole time with the late Joebe who wanted to impose his personal taste on the process.  I arrived at the interview deeply tanned from my beach time.  The interviewer took one look at me and said “Obviously, you are not seriously interested in working.”  He wouldn’t even look at the hours of work I had put in.

Fast forward, that  company made me permanent but I left after almost 7 years for the monolithic Bank. Finally, after 10 years was making a little bit more than those old expense account checks.   After 4 years, I was let go.  Back to the beach and back to bleaching out again.  And I married, again!  But this time I knew I would be working in the fall. It was a dream job at a major retailer making more than I had.  I also started moonlighting at the Bank.  What could go wrong?  Chapter 11 at the end of May.  For the 2nd time in two years, I was off for the summer.  Yup, beach and bleach.

Except for the first time at the end, I  was optimistic.  I had ideas and possibilities.

This time, I was let go in the fall after a total of 15 years.  I didn’t have the same hurt I had had with fashion.  My associations were different.  I was optimistic and calm.  I didn’t want to do my own business as I had done previously but actively look for work.

What’s different?  The Internet and my scads of experience.  Even if I was able, no beach and bleach for me.   I spend hours daily sometimes including the weekends looking for a job.  Today is one of the only days I am taking a “break” and writing.  What’s also different this time is that I am getting really good interviews.  What’s the problem?  Well, I am mature.  Experience costs money.  “We want you do but with someone out of college.”  Good luck to ya on that.  Didn’t you hear “You get what you pay for.”  And then, the elephant in the room.  My mobility.  There is nothing wrong with my brain.  I participate in research studies and I can remember the answers I missed the previous year!

It’s summer.  I HATE this condition.  It is taking so much away from me:  no beach and bleach, no walking, no gardening, no JOB!!  I need to channel that sense of optimism and possibility again.  I need to recharge without the beach.


June/July 2016 Check In

goofed.  I started this in the first few days of June and then stopped.  I have been blue, angry and pre-occupied.  It should be easier not working to be timely and thorough but somehow it’s not.  I am looking for the spark and the peace that seem to have disappeared.

Wow, I was checking my records and saw that last year I was interviewing and bombing out. too!

How did I feel this past Month?

Still blue.  There was no activity at all job wise.  This is depressing .  I also feel my health deteriorating.  I am not sure if this is a symptom.   The WEDDING  looms.  My stepson is getting married and it’s just going to be ugly on all kinds of levels.  And I continued to be blue through June also although jobs picked up.  I interviewed at three companies in two days and came up empty.  I was reminded I have a major reunion coming up next year.  I want to be able to walk and don’t see that happening.  My friends are retiring and/or having grandchildren so I am fighting regrets.

What did you do for yourself this month?

In May, I  did attend a professional association event.  I was surprised that I liked it.  Goes to show that sometimes you have to let go of assumptions. I also realized  that I had let part of my life go.  I have been  isolated.  I did sign up for two events back to back in June and then didn’t go.  The first one was for a cocktail party at a professional association. It was at a golf club.  The last time I was there was over 20 years ago in a blizzard.  The late Joebe had a DUI conviction and was finishing community service there. It’s beautiful, wooded and slightly hilly.  It was not fun driving his Camarro.   At the last moment last month, T decided to come with me and sit in the car as he thought due to said hilliness, I might need assistance getting in.  It was a beautiful evening with bad directions.  When we finally found the clubhouse there was only valet parking or far parking. I  would have been shot by the time I walked in so we left.  The next night was another professional event but I wimped out as it was rush hour and the Long Island Expressway.  I grew up with parents who had a terror of the expressway.  I have been working through  it but not at my strongest.

Trying to get back in touch with my creativity but feel too cluttered.

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

Still doing my Smoothies.  Cheating a bit on good eating but getting back into it.  When I eat well, I feel well.  When I am blue it just falls apart.

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

The gym has become my new happy place.  However due to blistering in my two day three company interview marathon, I am hurt and can’t wear shoes.  I lost the gym for over 10 days.  I went two days and reinjured my foot.  I am weaker.  It’s a vicious cycle.

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

I am grateful that I am still hobbling along.  I am grateful that despite not working the mortgage is paid and we can eat.  My stepsons came through for me in an awesome way with the blisters.  I am told and shown, I am loved.

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

No mission statement as usual.  I’ll co opt what I tell my little “elves”- spread joy, do good.

Conventional medicine  Still just Ampyra and Baclufen. I am looking forward to Opera in the fall.  I have just been told about Colostrum and am thinking about giving it a whirl.

Symptoms – Ah, the Raynaoud’s.  The doctor was quackery so I am just coping on my own. Getting weaker in my hands.  My balance may be getting minimally better.

What symptoms are most troublesome  – Independence and mobility.  Hands not working

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

How is stress level?  Very bad.  I think I have reached my limit.  Not working is impacting me on all levels.  I have an enormous amount of anger which I don’t like.

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

Think I am going to get a “tune up” with a therapist.  Amp up the physical therapy, exercise and right eating.