ampyra

Captive

Posted on by tresswann

Lately, I feel like  Rapunzel, no gold hair, no tower.

It’s summer.  I have always loved  summer.  I have a tropical background and on hot steamy humid days, I thrived, bloomed and glowed.  I’d wake early on weekends and days off and drive down to the beach in the early morning.  I’d walk on the wet sand, breathe in the  air, feel the salt on my skin.  Sit a bit in the warm sun, reading and dozing.  I would be off by 11 or so.  Only mad dogs and Englishmen go out in the midday sun.  After 4, I’d drive down to the beach and  walk the boardwalk.  Friday nights were the best – all the international families strolling, smell of suntan lotion mingling with the sea and other perfume. Evenings in the backyard with the scent of flowers mixing with the citronella torches and bug spray.

I used to be teased that I always managed to be unemployed in summer.  I would spend so much time outside that my dark brown hair would bleach.

Fast forward to now.  I am not working again.  While I was still working this summer, I was considered very glamorous as I would leave the office with a broad Italian straw hat and Audrey Hepburn-like glasses.  Yes, I like dressing like that but I also had to because of the way the sun impacts me.

Now I am confined to the house.  I cannot get into or out of the backyard without help.  It has a few steps.  I found this out the hard way a few years ago.  I was gardening and found that I was like the little mermaid.  My legs were useless.  I have been able to do it since with assistance and a cane.  We have a gazebo/screen house in the back and I have loved sitting there reading, working, studying.  So far this year, I can’t manage the steps or the bumpy grass.  I look out the back window.  I feel like the Lady of Shalot without the mirror.

There’s a butterfly bush outside the kitchen window and I watch the butterflies flitter on and off.

We plant pots of flowers against the house.  This Saturday was the first time I was able to walk up to the pots and see them after planting them in June.  If I say so myself, they are spectacular.

The other day, there was no humidity and low 80’s.  T was outside and I sat reading on our front stoop under an awning.  Maybe 30 minutes.  I was able to stand but struggled to get up the two steps.  Then I have to step into the house.  Not happening.  I tell T I need an ice pack.  He screams at me that it is only 4 inches.  It could be Mt. Everest.  The ice works.

The plan is, if the weather holds, between T and his son, I may be able to get in the back.  I weigh less now than what the “kid” used to dead lift.  That’s a positive.

Just blue as I can’t really leave the house and do anything.   Taking the mail in from the end of the drive is sometimes insurmountable.

The sky is that rich August blue.  I am inside, looking out.

I am finding it hard to be my joyous self.   I am mourning my body.

Second Wheelchair Trip and Further Revelations

Posted on by tresswann

Yes, I had my first wheelchair  experience in April at Mt. Sinai

In June, I had another, also at Mt. Sinai.

I was going  in for my second round of Rituxin.  Mentally, I was in much better shape.  I knew what to expect and did not anticipate the treatment would result in death.  In fact, I was looking forward to it, as this time I had a plan.  I was working, it was summer and I was going to go to the gym and pump that stuff through my system.

I  had a later appointment but we went in earlier in the hopes I could be squeezed in early.  Despite working, I had been walking less so I was fatigued when we came off the     bus.  Plus, I was naturally nervous and that impacts my walking as well. We staggered into the hospital.  The security guard came bounding over, asking if I wanted a wheelchair.  No, they have a great ramp to the elevators.  Then we walked the labyrinth to the treatment center.  It looked different.  T went to check me in as I sank into a chair.  A male nurse came over offering a chair.  I explained I didn’t need one to stagger the last few feet to lay down for 6 hours.  I heard loud voices.  Apparently, the treatment center had moved to another location, a couple of blocks away.  T was demanding  a chair at the same time the nurse was telling me that’s what we needed.  In April, I was put in a chair for speeds sake and whisked along underground passages.  This time it was outside sidewalks in NYC.  I became this little old diminished lady in a wheelchair.  No selfies.  It was bumpy and I felt less than.  Less than the full person I believe I am.  People were looking over my head or avoiding looking at me.  Ok, maybe it was in my mind.  And yes, at that point I would really  have had to struggle.  The pavement was bumpy, tilted and crowded.

The elevator was horrible.  Again, it must have been me but people were too kind and considerate.  Everyone loomed over me and I felt tinier and tinier.

When we got to the right floor, T handled just about everything.  It was, as if I wasn’t competent.  I felt very, very small.

I was even wheeled to the waiting room. I hated feeling diminished.

The treatment moved forward and I was able to walk well to the bus and through the station.  I had problems and continue to do so on the station stairs.

This is not going to be one of those cheery and then I overcame or realized what a blessing.

What I realized was unless I get better that I cannot work in NYC.  This is huge as that’s where the money and the opportunity is.  I see things that I want to do and my pre-condition brain says “what fun. Let’s do that.”  And then I realize not happening!

When I was first diagnosed, for one brief moment, I thought I was going to be a poster child.  I would learn all there was to learn and just be.  First thing I received was a brochure with a woman on a scooter.  I turned off immediately.  I wanted no part and still want no part of that type of acceptance.  The spectral leg, the cane have all set me back and pained me deeply.  They are physical representations of my limitations.  I have to accept them, for now.  But now is becoming an infinity.

True confession:  I was in DollarTree last week.  It was early in the morning and I should have been at the peak of my energy level.  Plus, give me a cart and I usually rock.  This leads me to the walker that I ordered in January that stays behind the den door.  Anyhow, I was destroyed.  I could barely walk.  For a brief moment, I wanted a motorized cart.  I couldn’t believe me!

Everything is not all good all the time.

I am happy to say I am still fighting as hard as it is becoming.  Some days, it seems insurmountable.  I hate being confined to my body.  Guess, I need to work on that spirit thing.

Oh, and by the way, my doctor said she noticed a spiritual change in me.  She has me  confused with someone else.  There is nothing grateful or spiritual about this!

End of pity party, for now.

 

Firsts and Hopefully Lasts

Posted on by tresswann

I participate in research studies.   It’s a way of making some good come out of something less than positive.   And it’s also the way I can get MRI’s.  When I originally had insurance and this started. My first MRIs cost me thousands.  Then I had Affordable care and it was reasonable.  I am back to corporate insurance and a too high copay.

This study also focuses on the neurologic.  Usually, I do those, the blood and the physical first and the 90 minutes or so of MRIs last.  This time it was reversed.  We needed to be at MRIs first at  9a.m.

I am spoiled.  Since I have started working on LI, waking at 4:15 a.m. no longer appeals to me.

I was better able to get to the bus uptown this time.  However, I realize that I am no longer able to work in NYC.  This is extremely disheartening.   We took a slightly later train and ran a little late.  It’s two blocks from the main office to the MRI.  Unless you have issues walking, you don’t realize that the sidewalk is slightly slanted and is not completely flush.  Also, my legs don’t work when I am upset.

I said to Tom “I think I am going to need a wheelchair to make it to the MRI.”  Now, they always offer and I always refuse.  Once,  years ago, I told him I needed a chair and  he told me if he had to carry me, it wasn’t happening.   He said,  I was going to tell you that we need one but thought you would be mad.” Oh well.  When we arrived, the research assistant said, “let’s get you a wheelchair.”  I nearly burst into tears. Ironically, there’s an underground passage.  I could have walked it but we definitely would have been late.  And it’s longer.

Now here’s the funny thing, I fall asleep during MRIs.  Yup.  No problems.  See, no one can get me there.  No one can call me or email me.  They tuck me in with a nice blanket.  Could a girl want more?  I was signed up for a special one. This time, they made me wear two gowns.  LUCKY!  So, now is the fun part.  I don’t have spectral leg, cane or glasses.  They have to carry me onto the machine. I get my nap.  They pull me out.  I am used to this drill.  They usually reposition  me and roll me back in.  Not this time.  We do the carry thing into another room and machine.  Ah, that explains the double gown!  I settle in to a new machine.  They pull me out again.  The machine is broken!

Back to the wheelchair.  And onto the neurological tests.  Well, first I do the physical .  My now usual stumble. The thing with the neurological tests is they are usually the same.  They read a list of objects and I tell them the list back.  I am really good at this. I remember from year to year. LOL.  This year they changed the list.  Hey, I aced it, no mistakes.  There are other tests which I also remember.  One I particularly dislike  is 6 shapes that you need to sort into 2 groups of 3.  I miss some usually.  This time I did more combinations than ever.  My mind is not declining.  Researcher said she won’t tell me what I missed ’cause I’ll remember next year.

Being in a wheelchair was  weird. I felt diminished. I was lower than everyone.  People moved out of our way. Moving without doing anything was unsettling.  On one hand, it was stress-free; on the other it was awful to think that I had come to that.

This cannot continue.  I cannot give up.  I don’t know what to do.

Doctor’s Visit

Posted on by tresswann

I bit my nails until a few years ago.  I mean chewed them.   I used to commute with my mother and she used to smack me when I bit them.  This was odd because not only was I an adult but we were different colors.  A few years ago I just made up my mind and let them grow. It was the look my mother had always wanted to see – long thin painted fingers.  She had passed away by the time I accomplished this.  It has become part of who I am.  At the salon, they told  me my nails were very strong .  Apparently, this is the case for former biters.

This past summer in August , my youngest stepson was married and I had them done.  They were perfect, no cracks.  They kept on growing.  I had talons.  They were uncomfortable.  We couldn’t cut them at all they were that hard. So, back to the salon.

What does this have to do with my condition? Well, almost three months ago I started megadoses of  biotin.  Biotin is used to strengthen your nails and hair. Also. maybe myelin repair.   Guess what?  My nails are snapping like crazy.  They are back to short.  My thought,  if this is happening to my nails, what about my bones?   My hands don’t look like me, along with others parts of me that are changing.  This was a little vanity for me.  The doctor said it wasn’t the biotin but the steroids still in my body from the Rituxin.  Guess that’s the little weight I’ve gained.

Recently , because of changes in insurance, it became necessary to cut  Ampyra to one time a day.  Frankly, we thought it wasn’t really working.  Well, quickly found out one a day impacted me badly.   Luckily, insurance sorted out with a day to go.  I  was so scared.

My right leg is the one with  the problem but lately my left knee has been killing me.  Did I say that I did go to an orthopedist last year for my foot – more on that below and wore beaded capris during the scans?  He was fascinated as he didn’t know what those little things were.  He couldn’t help me with the foot as he only does knees and hips.  He said the top of my knee was mildly arthritic.  Well now, somedays it is excruciating. It also  collapses unexpectedly.   My doctor says it’s not the condition.  The collapsing thing I thought was.

I did do my usual timed walk. It was AWFUL.  I really hadn’t changed my pace prior to this.  This time I walked like a toddler!  I told the doctor that and she said “But you are an adult.”  Exactly.  No comfort.  Apparently, part of the problem  is that I am hyperextending my left leg.  Her verdict I need an orthopedist.  Me – knee brace via Amazonprime.  In February 2008 I walked into that office in high heels.

More aches   and pains.  Recently and inexplicably, I have had sudden cry out loud stabbing pain.  Her verdict? Some nerve thing, you should see an orthopedist.

Next issue.  Since last winter I have experienced a burning sensation in my right foot, particularly when I wear tied shoes.  The GP suggested it was a condition thing.  I was also told it’s in my mind.  I only know that it feels like my foot is on fire and if it happens in the car I can barely drive.  Another suggestion was the spectral leg wasn’t fitting. To me, it has felt like a deep blister.  Well, I played around with corn removers and wart removers.  It’s not in my mind.  I took a picture which I will not share which is truly disgusting but shows that I have what looks like a deep bruise and bleeding.  Verdict:  Orthopedist!

One thing that I realized during this trip to the doctor is that at this point, I can no longer work in NYC.  This is devastating to me. I make more money in the city.  It’s more open.  There’s a vibrancy there.  Okay, this time I could drag myself up onto the bus without help but I couldn’t really walk by myself.  If my husband hadn’t been with me, I would have been pushed or fallen.  My world narrows.

On the upside or at least I am looking on it as an upside, the newspaper hawker called out to me.  “Good to see you again baby.”  This is the woman who picked me up off the sidewalk in front of the station about four years ago.  People recognize and support me in my struggle.

Also, on the positive side my doctor has offered to come into work early for my next exam so I lose less time at work,  See above – support in my struggle.

Old Girlfriends, Postal and Rituxan

Posted on by tresswann

What a difference a day makes!  An update on the postal situation from yesterday.  I placed calls to his landlord, psychologist and the VA.  The VA was helpful.  No calls from the others by 4 p.m. so I call K back.  He’s very cryptic and said the situation has been settled for $400.  He doesn’t sound right.  “Are you on drugs?”  “Of course.”  I finally am able to get his cousin’s name and phone number out of him.  Bombshell.  K has checked himself out of facility and told them and cousin that he is coming to live with me.  This is not possible on so many levels.  He appears to grasp this and states his intent is to check into one of the cheap, tawdry motels on Montauk or Sunrise.  In fact, there is one within walking distance of my house that I call the Pedophile Motel as a year or so before we moved in there were legal issues as it appeared the town and county were housing all the pedophiles there. Alright, I tell him we’ll deal and get him situated.  I tell him that I have called the landlord and will call him again.  My husband is livid over the situation and thinks the landlord has K’s belongings.  He wants to drive over, get everything before it’s tossed then drop the dime on the illegal rental.  K says don’t call him again.  He’s spoken to him today and landlord was very cold. He also tells me to say nothing of his plan to his cousin. Now whilst I am having this conversation with K on my landline, I hear other calls coming in and my cell is ringing too.  I see one call on the cell is my neurologist so husband picks that one up.

I hang up and see the landlord has called me.  I ring back.  Wow.  K has played us all.  I worked for years on a phone so I am really good with voices and lies.  Landlord is a straight up guy.  After I saw K just before Labor Day weekend, he rapidly deteriorated and was falling several times a day.  It culminated, ironically, enough on September 11, when landlord S’s children heard yelling. K had fallen facedown for 10 hours.  K was refusing help.  S told him paramedics or police.  He was hospitalized for 5 or 6 days.  During his episode, he had crystallization of his blood.  K was released to an assisted living/rehab facility.  Ironically, my husband and I drive by there all the time.  He was there until the end of September when the insurance ran out.  The cousin P was called.  The facility told him that K could walk 160 feet with a walker.  However, he had degenerated so much during this period that he was not allowed to use the bathroom on his own.  S had looked into the apartment with a view to making it handicapped accessible.  K had lived there almost 11 years.  Apparently, he has not had control of his urine or bowel for sometime.  The apartment/room needed fumigation and a new floor.  S also determined that he could not assume the responsibility nor have his children exposed to the consequences of falling,  S drove him to the cousin P in Maryland.  He had to help him in the bathroom on the way down.

The first night at the cousin’s he fell repeatedly.  The cousin called an ambulance.

I have a call into the cousin.  The cousin takes care of his nephew who as far as I can ascertain on the phone has at minimum a significant speech impediment.  I call twice leaving messages.

In the meantime, the psychologist has left a message for me on my cell.  All three of these men know of me as an old girlfriend, not my name,  just an old girlfriend.  The psychologist, B, and I have quite the conversation.  He has treated K for years.  In fact, he has retired and is very old.  He sounds ancient on the phone.

B never knew that I knew K at the time of the original postal  incident.  I had to go into therapy because of it.  I couldn’t handle it and left K for someone else.  K stalked me and threatened me when he found out.  I know, atrocious taste in men.  At that time in the late 80’s, there wasn’t the awareness or sensitivity to domestic violence there is now.  The police told me there was nothing they could do until he actually hurt me.  Their suggestion was for me to move.  In Suffolk county at that time there was a rash of domestic killings in a few months. I know because my girl friends, their mothers and my parents all cut out the clippings for me.  And yes, I went back into therapy once his meds were stabilized and I started interacting and seeing him again.

I give B the cousin, the landlord and the facility numbers as I explain he will have more weight than I do.

 

P calls back.  “Thank G-d you called.  I have been trying to get K to give me your name, number and address!”  He told K that he wanted to talk to me before he dropped him here  today. K has even told him I have been married twice.  P questions whether my husband will accept him.  K refuses to give up my address but instead tells P how to get my house from his room.

We have a most illuminating conversation.  P also knew of me as the old girlfriend, no name.  But he knew of my diagnosis, my two marriages and that I went to Hopkins.  Unless people tick me off, I don’t usually tell them I went to Hopkins but say I went to college in Baltimore.  I did the same yesterday and all three men said “Yeah, I knew you went to Hopkins.”  P found out from me the truth of the postal incident.  No, he didn’t hit 3 -4 guys.  They did try to provoke him to do so but instead his blood pressure rose so high he nearly stroked out and was taken out by ambulance.  I thought K’s father and mother were both evil and I do not use that term lightly.  K is older than me and his teachers reported the father for child abuse.  In that era you could just about kill your kids.  There were 6 brothers.  At least two are dead and one has been institutionalized for years.  Despite this K kept in touch with his father who ended up living in an SRO.  When he died, his mother refused to have anything to do with the burial.  Only one brother came.  That’s one of my gripes against the mother.  She was a lay minister in the Catholic church and would not separate or divorce the father.  She sacrificed her sons.  I do not believe in that kind of G-d.  P told me as soon as they were old enough each son beat the father up.  K broke his jaw.  He also shared my opinion of the mother and told me more stories about her.

All three men and I shared stories of K’s increasing paranoia and remoteness. I bought a computer for K once when I had a huge bonus.  Good fortune is meant to be shared.  A few years later he returned it to me saying it was broken,  Maybe,  but apparently was truly paranoid about it.  He wouldn’t use one at the library either.  He only recently had a cellphone and I believe it was through a program.  Caller ID displayed LI Spinal Foundation.

P can’t fight him any more and told K he will take him anywhere he wants to go.  He will leave him at a motel, wait an hour and call 911.  I beg him to let me know and I will call if necessary.

Oh, and the call my husband answered on my cell?  It’s my doctor’s office asking me to come in today.  I have been approved for the Rituxan.  I don’t even register this or remember it till after 8 p.m.  This is huge.  This drug could literally change my life. I can’t even process this.  I keep on forgetting!

 

My husband wakes in a rage this morning.  How could anyone dump K?  I repeat our 911 plan.  Smack forehead.  Of course, the police will come before ambulance.  We anticipate his resistance and see jail in his future or else due to late father’s influence (top police lieutenant) K being able to stay in motel to die.  He was able to get out of a traffic incident this summer dropping names.

I call the VA again this morning.  They suggest the cousin drive him directly there.  He is technically homeless and they have a shelter on the property.

The Catholic hospital nearest me said if there were mental health issues, they couldn’t take him.

I call the psychologist.  He has had no luck with the cousin.  He said P was adamant K was going to New York.  He and his wife also had the same serious reservations about the 911 plan.  B then revealed that K was so paranoid that for five years he would only meet B at diners or restaurants away from where they both lived.  His opinion was that K cannot survive in a group situation. Also, none of us must have any guilt   as we all have done much more than could be expected.  We are all good people.

At ten of two this afternoon, the phone rang.  It was P.  He went to get K at 8 and asked where are we going?  K said I’ll let you know in 4 hours.  P refused.  They went to 7 -11 for an hour and a half.  For now sanity has prevailed and K has agreed to stay and sign on a contract to live there. He says he doesn’t want to die in Maryland.  The cousin says who wants to die?

We all agree that this is very sad.  It is.  I agree we all tried to do the best we could. But I am looking at it another way.  We have all known K for decades.  We knew of each other – the old girlfriend, the cousin, the shrink, the landlord.  He reduced us  all to the role he wanted us to have in his life. We all do that.  K is just more extreme about it due to his emotional issues.

Ok, not guilt but I am so questioning myself.  How did I let myself so eagerly be a part of this.  K and I never officially lived together.  I have been married twice, lived with someone and had numerous affairs.  Through all this we have been constants in each other’s lives.  We have been “in sickness and in health, for richer or poorer.”  I need to process what it means.  I sense that somewhere along the way, we all failed him.  And I, I failed myself.  Why can’t I let go?  Why have I maintained a relationship with a man capable of hurting me physically? All relationships involve hurt.

If this crisis had not occurred, we all would still be in our roles.  How do we as a society perpetuate these situations?  We are all so close and yet so distant.

Disabilities, Limitations or Issues

Posted on by tresswann

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?

Doctors, Drugs, Disability

Posted on by tresswann

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:

Rituximab.

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.

Out of Work Summers – Beach and Bleach

Posted on by tresswann

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

Posted on by tresswann

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.

Red Shoes, Blisters, Mom

Posted on by tresswann

I am fascinated by shoes, especially since I have mobility issues and can’t  wear what I want.  Now I do have my fashion fetishes  though shoes are not one.  That was my mother’s.  She thought of herself as an Imelda Marcos of shoes.  Couldn’t walk past a shoe department.  If I had anything, it was probably the irresistible lure of flip flops.  Still, certain shoes have marked certain times in my life.

I hate now that I have to wear flat, primarily oxford shoes.  My goal is not to look orthopedic or old.  This winter I bought a nice pair of metallic  slip ons at Clark’s.  Normally, this might be a Sunday afternoon jeans kind of shoe but it’s my alternative to my shiny black male bankers shoes.  It’s been comfortable in the winter.

Another factoid about me.  I like to go shoeless and barefoot.  Years ago, I worked for a man who said, “Sweetie, I pay you enough to wear shoes.”  I was known for being in meetings and taking them off.  I used to have really tough feet too due to going barefoot all the time.  The one place I really perspire is through my feet.  So, I never wear hose with shoes, if I wear shoes when it’s warm.  Things have changed and I cannot leave the house without the spectral leg and hence the ugly shoes.

I had interviews with three companies over two days in NYC this week.  In the past, these would have been in great locations and all walkable.  And it was in the 80’s.  Technically, according to my doctor, I am not supposed to be in NYC in that kind of heat.  On Monday, I had to walk 2 blocks and a bit to my 2nd interview.  Caught a cab back to Penn but walked a little further than normal.  I had the beginnings of a blister, the Clarks with no hose.

The other thing that has been happening with this new spectral leg is that the bottom of my foot burns.  It feels as if it’s on fire.  I can’t take the shoes off by myself.  Well, actually I can take them off, just can’t put them back on.  This adds to the irritation as I try and wiggle them around.

Back for the second round on Tuesday.  I don’t want to look too formal but because it’s an interview I can’t wear the gladiator sandals that work with the spectral leg.  Back into the Clarks with bandages.  By the time I get off the train I realize this is not working.  Ever resourceful, I try to shove lidocaine cream and tissues into the shoe.  I have long nails so this isn’t primo either.

The interview is on Broadway, literally a block and a bit from Penn.  However, I don’t want to arrive staggering.  Due to blister I miss the bus and have to stand out in the hot sun for 8 (I counted) minutes.  So, when I take the bus one stop and have to cross the street, it’s not going well.  I then interview with two different people on two different floors. What do I do in the waiting room?  I lust after the other people’s shoes. I see someone with red -soled Louboutin’s.   A beautiful  flat  strippy  sandal.

There is no bus the other way and it takes me almost 40 minutes to walk the block back.  A businessman on 32nd Street asked me if I needed help and when I said “no, one step at a time”, he told me I was still pretty.  Being vain, that brought a smile to my face.  However, by the time I started to cross 7th avenue, I needed help.  An homeless veteran helped me the last few feet and one of the sightseeing bus hawkers helped me to the escalator.  I missed my train but continued to stagger through Penn.  Walk ten steps, rest 30 seconds.  I made it to the wall of the police substation.  They noticed and an officer let me sit on the bench inside.  It helped enormously.  Staggered to the train and then down the two flights of concrete stairs to the car.  I did not cry.  Just kept powering through.  Tom nearly cried when I got in the door and took off my shoe.  He wouldn’t even let me get off the chair for an hour.

My foot is a swollen, infected mess.  I did well on the interviews despite that.

This brings me to a memory.  I lived almost two miles from high school and I hated it.  I did  frequently what I am known to do.  I walk away.  Well, now I really can’t but voting with my feet is the way I have handled my life.  So, I used to literally just walk out of school.  Sometimes, I’d go back.  I was also brought up to be my own person and not go with the crowd.  But high school is still high school.  I bought a pair of red suede baby huey shoes for $3 at Thom McCann.  This was huge.  My allowance at the time might have been $1 a week.  I am also my grandmother’s child.  She was a precursor of the “It’s better to look good than to feel good” school of thinking.  So, I wore my hard as rock red suede shoes with a fine wale lavender corduroy pant and lavender Missoniesque body suit to school.  Decided I didn’t want to be there and left.  Halfway home I felt hurt.  Pre-cellphone plus I was cutting school.  Arrived home and my gran and dad were horrified (Ma was at work).  The hems of my lavender pants were red and matched my shoes.  Not only had I burst blisters but had gone almost to the bone..  I literally couldn’t go to school for three days.

Which brings me to me and Ma.  She always told me she had a high tolerance for pain.  She said childbirth  was vastly overrated.  She used to have her teeth drilled without Novocain.   And the implication always was that I couldn’t.  Yet, look what I have done even going back that far.  I just sucked it up and kept on going.  I do deal with pain and uncertainty.  I need to acknowledge I am brave.  I keep on going and ignore the inconvenient.

On the down side, I was practically in tears going to Penn this week.  I used to walk to midtown in a third of the time it took me to walk one block.  I HATED looking and acting like the fragile elderly.  I REFUSE!