walking

Heidi, the Super Bowl, Secret Garden, Pollyanna and Me

Posted on by tresswann

The SuperBowl has been on my mind as it has recently passed.  My family weren’t football fans but totally baseball mad.  Tom watched it in full for the first time in decades.  Anyway, my mind was just drifting along and I remembered “Heidi loves the Super Bowl”.  Yes, you have to be of a certain age to remember and appreciate that bumper/sticker joke.  I was one of the children breathlessly awaiting the broadcast of Heidi.  I don’t recall the exact details as I was a child and football not a religion practiced in my home, but it was at some critical juncture in the game, that the network cut over to Heidi. It must have been around 7 o’clock and of course, on a Sunday evening I was one of those children who adored Heidi.  It was one of my favorite childhood books.  I would not have been allowed to stay up late on a school night.

Heidi

Heidi’s story, as filtered through memory – Heidi is a miserable child and sent to live with her grumpy, mean Grandfather in the Alps.  He forces her to go outside, play,  herd goats and get apples in her cheeks.  Somehow, she encounters Klara, a young sick girl, who reading between the lines, is not expected to last long.  Klara can’t walk either.  Heidi enlists Grandfather to do for Klara what he has done for her.  She drinks  goat milk from the herd. And with exercise, good air and clean food, Klara is cured and can walk.  More or less.  It’s been decades.  I  shall have to gimp upstairs to my childhood shelf and have a read.

secret garden

One of my other favorite books as a child and yes, just a plain favorite is The Secret Garden.  Again, the condensed via me version:  Mary is a miserable, spoiled brat baby and sickly.  She is sent to live with her uncle in England.  Again good air, good food and a new friend lead to a change in her.  She discovers her cousin Colin hidden away – bedridden, can’t walk, not expected to live.  Good air and food plus exercise and he walks again.

My parents used to tease and call me Pollyanna  or Rebecca of Sunnybrook Farm.  No recollection  of Rebecca but a memory of the film Pollyanna with Hayley Mills.  I did want to be Hayley Mills.  My recollection is that Pollyanna is a positive child, gets ill, loses her ability to walk; in this case she doesn’t get to walk again but everyone loves her more.  No memory of Rebecca except that she was cheery.

So, where is this leading?  I have been steadily deteriorating over the last few months.  I have attributed this to bad eating and lack of activity.  The last week has been particularly brutal.  My doctors have pooh-poohed me.  It’s the nature of the disease.  It’s supposed to progress and it is.  There is no cure at this time and it is inevitable.  From day one, I have never bought into that.  I do believe that food and notjust “eat healthy” impacts walking.  Not walking and being as active as I used to be takes its toll.  It’s a vicious cycle – less activity, more fatigue, more stress, less activity….   Eating needs to be tweaked and healthy is relative.  I am still sorting it out,  But do not, do not tell a woman who has metabolized Heidi and The Secret Garden into her DNA that she will not walk again and wheelchairs and scooters are inevitable.  Obviously, you have not read what I did as a child.

Here’s to Colin, Klara and me, perpetually Pollyanna and proud of it.

Mourning Clothes

Posted on by tresswann

I know it sounds trivial but I am mourning my clothes.  The weather has  snapped and I need heavier clothes.  The way my house is structured there is only one real closet.  We do have armoires upstairs, keyword – upstairs.  I have enormous problems going up and downstairs without having anything in my hands.  I used to work in the garment industry and from time to time in retail sales.  I know how to carry tons of clothing over my arm.  I used to do it without even thinking about it. Now, I have problems hanging one suit in the closet.  Plus, I am dependent on T to get up and down the stairs and carry things.

So, this morning we go up and I want to bring my winter things down.  I’ve already brought down most of the casual stuff – the sweaters, the cords.  Today is for the business and dress stuff.  Each season change, it’s like running into old friends.  This year,  there are new and different options.   I weigh less so fit into different things.  And since I constantly have to use a cane instead of making the spectral leg visible, I have more options.

I bought some beautiful suits and pieces when I returned to work last year.

I start making a pile for Tom to take downstairs.  “Where are you going to wear all this stuff, really.”  Rub it in.  I worked from mid-February last year.  And the winter before that, I interviewed heavily.

We brought the clothes downstairs.  I don’t want to give them up.  I have always had a definitive sense of style.  I express myself through my clothes.  I do not want to live in sweatpants and jeans.  It’s not who I am.  I miss my dresses! Forget the party stuff.  I left all that black velvet upstairs.  I haven’t been to a party in years.  I was down to one holiday luncheon or dinner a year.  It’s hard for me to navigate.  NYC is out of the question.

People barely dress any more.  It is depressing to see all the faded jeans worn by faded people.  Where’s the sense of excitement?  Where’s uniqueness.  Let me date myself further by saying I sound like Hermione Gingold in both Gigi and A Little Night Music.

 

I have more pants than ever.  I was brought up in a household where ladies don’t wear trousers.  However, I need them for interviews  so I don’t terrify potential employers completely.

Today, I am realizing who am I kidding?  I have had 1 in-person interview since July.

I want to get up most mornings and wear my clothes. I want to preen like a peacock.

This condition is trying to destroy my soul.  It’s tried to take so much from me.  I have to draw a line in the sand, somehow.

Yet Another’s Doctor Visit – Digress and Progress

Posted on by tresswann

Every time I decide I am going to break up with my doctor, I fall in love with her all over again.

I went into NYC  Friday morning for a belated visit.  Originally, she wanted  to see me in June before my infusion therapy.  It didn’t happen.  Then came summer with the anticipated railroad problems leading us to September.  I cancelled last Monday because it was mid day, bad weather and the UN Assembly was in session.  Glorious cool weather Friday.  I wore my macrame type sandals.  It was a bit cool but they are comfortable plus I knew they wouldn’t fall off if I had to go up or downstairs.  I was walking for crap.  We got into Penn shortly after  7:30 a.m. so it wasn’t horrifically busy.  I was frightened.  If I hadn’t been holding onto Tom, I would have been  knocked over or fallen.  He had my back for the escalators which have become another ring of Hell for me.  It’s one thing getting on.  It’s a whole other thing getting off.  Then we had to cross 7th Avenue.  Yes, I was already shot before I reached the bus.  I started to become agitated and weepy as it was clear to me that NYC is gone for me.  This is where I worked.  This is where I can make real money and do something that I like.  And it’s more than that.  It’s the stimulation of the city – the clothes, the food, the lights, the culture.  It’s closed to me.  I can no longer do this.  I struggle onto the bus. Tom has to lift my left leg to get me on  The bus driver is awesome.  She asks where I am getting off so she can make sure she pulls all the way in.  I take a disabled seat.  Somewhere in the 40’s, 50’s a sandwich delivery guy sits next to me with huge delivery bags. Uh, how am I going to manage getting out?  Just breathe! Then in the 60’s a man with a scooter prepares to get on.  My bus driver ejects the delivery fellow and the older lady across from me.  “You stay”  I am amazed when someone tries to push past him as he is leaving.

I am the first appointment at the doctor’s which is good.  She calls out to me as she is coming in with her coffee.  She spends nearly an hour with me.  Sometimes, I am techy and sometimes I am so not.  I recently figured out how to make Notes on the phone.  So, I’ve been collecting all my concerns in a format that is accessible and legible.

First off, we admire my sandals as I tell her that I need a new spectral leg.  She is referring me to a rehabilitation specialist.  He will look at cane, spectral leg aka brace, physical therapy and the way I actually walk.  This is good.

Bad, she thinks I should use the walker.  The  one that has been sitting behind the door, bought with an Amazon freebie.

She tells me how I am always so well put together and how important it is for my health.  I have on the beaded and embroidered 3/4 length pants that the orthopedist thought when the beads showed up on the scan, that he had discovered a whole new syndrome.  My therapist also says I am always put together  and it’s good for my health.  I miss getting dressed for work.  I open my closet and mourn.

I have low blood pressure.  My  late former in laws used to marvel how low it was without medication.  Due to Tom’s recent cardiac adventures  and his obsessive nature, blood pressure is taken all the time.  We even checked his machine against his surgeon’s and it’s fairly accurate.  Mine is way, way low.  Doctor says, “Are you dizzy or faint”  No, that is my old stress reaction.  I turn grey and my eyeballs roll up in my head.  Doctor says, “What we say about people like you around here is that you are going to live forever.  You are good.”

We talked about my drugs.  Yes, she wants me to stay with the alpha-lipoic and the Biotin.  Okay, as I have said before I have issues around my nails.  They were bitten and ripped to the quick for years.  A few years ago I decided  enough and grew them.  They have been  long and hard since then.  Last October I had to go to the salon to have them cut.  This year, they are snapping like crazy and my hair is visibly thinning. Salon’s verdict on the nails – maybe they are too hard.  Doctor’s question – what are you eating? Ah, here we go – not enough protein.  This has always been challenging for me.  I am so not a meat eater.

Now, I find this talk of food extremely interesting.  When this journey started, I asked her boss about food and he pooh-poohed me.  I took myself and my money to a nutritionist and she gave me what I thought    was an insane diet and other doctors subsequently agreed.  If she had only said, “This is the Swank Diet and it’s been used since the 1950’s.” I would have signed up.  As things progressed, I discovered a  bunch of different ways to eat that can address this.  Two years ago, I stopped gluten for months and noticed the difference.  Alas, I’ve fallen off the wagon.  Recently, I saw that the institution that treats me has done food studies.  In case you haven’t guessed it does make a difference.

My husband used to work at nights.  He’d wake around 11 and I’d go to bed around 9.  The last night he worked, I got up to go to the bathroom shortly before 11.  I remember feeling very hot and not so well.  The next thing was Tom shaking awake from a really great sleep.  He awoke to find my body in the hall.  We have a very tiny house.  There was blood on my head.  We never knew if I passed out and hit my head on the way down or hit my head and passed out.  Lately, I have had episodes when I experience the same kind of heat and my glasses fog briefly.  And the answer is still MENOPAUSE!   She suggests also that I drink more water.

Now all this caused me to start thinking about my period, menopause and my affliction.  People always laugh because I know the exact date it started.  Easy, because it was Halloween.  So, 40 years later in October I decided enough is enough.  I willed myself for it to stop.  Wait a minute.  That’s when I became symptomatic.  Something to ponder and research.  Not sure where it will all lead.

We are now at the 25 feet walk.  First time, when it started, I did this in heels.  I tell her I walk like a toddler.  She tells me I walk like me.  So, not a good thought.  This is the  first time I have ever done it with a cane.  I am terrible and slow.  I miss walking  I miss the speed, the breeze, the joy.  Walking was how I figured things out.  It seems like everything is being  taken away.

Now, to the inspirational part, and I hate the  inspiration part, attitude counts.  I told the doctor about the woman I had met who was diagnosed this year and appears to have given up.  She is anticipating the worse – making arrangements for ramps, etc.  Here’s a difference, I told the doctor in the last few weeks, I seem to be experiencing MS fatigue.  I used to be relatively tired all the time, waking for work in the 4  a.m. hour.  This is different.  It feels like dying, I guess.  It is the most peculiar sensation.  “Have you ever considered a nap?”   I am my mother’s daughter.  Maybe, just maybe if you have a high fever.  Though I have memories before this marriage of drifting off during a Saturday afternoon radio program.  She agrees that our mothers were the same and insists I need to nap.  Here’s the thing – if I feel like I am dying, the last thing I am doing is closing my eyes and lying down.  And my life is short and limited enough as it is.  I will not waste what’s left of it napping.  The other woman doesn’t nap.  She stays in bed all day! My doctor admits that attitude is important.  She starts to tell me about a patient group.  I cut her off.  I am so not interested in people who LOVE their scooters!  Nope, this is cool.  These ladies attend all the drug dinners for free, whether they can or cannot or want to take the drug.  They get a paid night out to hang with their friends.  This is a good idea.

I leave with recommendations  for disability, physical therapy and Ocrewhatever (there is a small risk for breast cancer and I have the dense ones.  I always picture them as saying d’uh?)  I also leave more determined than ever to beat the odds.  Why not?

 

Third Wheelchair Ride

Posted on by tresswann

This is beginning to be so unfunny.

My husband gives platelets regularly.  He has a high platelet count and is a universal donor.  He does it just because and has only used his accrued point one time to get a fleece that advertises the Blood Center.  H e went  mid July but they couldn’t do it as his blood pressure and pulse were too  high. H e’d had a steak dinner the night before and had taken his blood pressure meds too late.  Two weeks ago, his pressure was alright but his pulse was still high.  We started to monitor it but it didn’t go down.  In the middle of the night he told me his heart was racing.  I made him call the doctor yesterday and she said ER.  We called urgent care, same answer ER.

We went.  By the time, we arrived, parked and he helped me struggle over, his BP and pulse were catastrophic.  Of course, I walked for crap because I was so nervous.  Now going to the ER here is not a new experience for me.  My first time was 11 years ago, when Justin’s SUV was totaled.  He called to say that the driver’s side was destroyed.  OMG! You weren’t driving?  No, when I saw the truck coming at me, I jumped into the passenger side.  I had to take that call as Tom went completely white.  So, the evil stepmother, aka me, insisted on ER.  He walked out but ended up there 2 days later anyway.

My next visit was 7 or 8 years ago.  I had a restraining order against him for drinking and he was seriously out of control.  I locked him out and he went to his sister’s.  He wanted help but was drinking even more there.  I walked out of work in NYC, dragged him into the car, held onto him as he tried to jump out while it was moving and dragged him into ER.  I can’t remember his blood level alcohol at the time except that it was astronomical.  There was a warrant out for his arrest but he was able to get into rehab.  It was not successful.  Other visits ensued.  One time, they had to guard him and put him in restraints.  Another time, I just checked him in and left.  Twice, after his cancer operation, I had to take him to Stony Brook ER.

All of these times, I wasn’t scared.  Ok, 2nd Stony Brook ER, I was.  However, throughout all of these and his cancer operation and his hernia operation, I worked.  I had that laptop and kept on going.      I can be a monster in that regard.  We needed the money and I needed the distraction.

The difference last night was that he was conscious and aware.  I wasn’t working either.  The other times, we pretty much knew what was wrong.  Last night they did not.  And before, I could always walk.

Alright, for his hernia operation in 2015, my brother-in-law helped.  At the hospital, they thought I was the patient.  A friend of mine was in the ER a few weeks ago and again, everyone thought I was the patient.  Last night, they gave him the visitor pass.

They announced at 7 pm that all family members/visitors had to leave the ER.  This was going to be extremely difficult for me.  I knew I couldn’t make it to the car at all by myself.  They told me they could not release him.  We thought someone could just give me their arm and I would go and wait for Justin.  No Security was  hell bent on getting me out of there.  They provided a wheelchair even though I explained I had only been in one twice before.  The guard even asked me if I could move my feet.  Uh, that is the problem.  I protested as I didn’t want Justin to see me like that.  The guard literally left me in the waiting room.  Luckily, I was able to navigate out of the chair just before the kids came.

They took me home.  I am appalled at my deterioration.

Apparently, Tom may be operated on today. It’s a simple procedure.  At least, that’s what they tell me.  Hopefully, I will be able to get help there and back.

I am so scared this time.

Tomorrow is our 13th wedding  anniversary,  Recently, I was contemplating life without him.  I realize that no longer is an option.

 

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.

Visibility Disability

Posted on by tresswann

I have always been visible.   Part of it from an early age has been because of being interracial.  Especially when I was a child, people look at you and your parents.  I come from a strong maternal line.  My cousins and I range from blonde to deep brown.   We have the same face.  On the rare occasions when we were together as teens, people would do double takes.  The eyes processed what the brain could not.reima-1959-grandma-made-the-dress

Susan, Peter, David, Paul

My mother, being a colonial of a certain age, brought me up with certain attitudes and expectations.  A lady did not leave the house without hat or gloves.  So yeah, there I was in NYC, in the summer, in the subway, with gloves.  And a hat.  Actually, not such a bad thing.  I have to tell you though those gloves were a bitch to keep clean!  The hats.  I love hats and used to look really good in them.  My mum wore them, too.  So, we could be out, at the grocery or mall, hatless and someone would walk up to us and say “oh, you’re the ladies (girl) with the hats.

Fashion has been my life and consuming interest. I used to work in it and have been privileged to attend pret a porter.  Can I tell you, I was noticed there, too?  Very proud of that one.  I used to go to Europe regularly for a job.  I went after losing it and had a call when I returned home from a former colleague ” You were in Spain and Italy a few weeks ago”  Yes, I was noticed.

Another thing I am known for is my smile.  I like to share my joy.  When I returned to another job  I  was approached numerous times because my smile was missed.

So yes, I am used to being noticed but now is different. Now, I am noticed because of the cane  ( I hate that word) and the spectral leg.  That has become what makes me stand out.

When I was still working,  I worked in a JP Morgan Chase building.  The security guards watched out for me.  One used to see me walking in the morning and help me cross the street.  It made me feel like a fragile little old lady which I am so not, at least in my mind.  If I went out to lunch at the rear of the building, he’d make sure I got on the escalator safely then run down the stairs to help me when I came off.  Another one, a woman, who went to another building, would see me crossing and yell at cars and people and help me.  One that saw me in the building  always worried  when I was on vacation or out for a few days.   She too, would help me up the stairs.

I have been out of work in NYC for over a year.  As I said, the newspaper hawker was glad to see me a few weeks ago.  In December and January, I had to go in and take the same bus and train that I used to.  My husband was overwhelmed by the people who came up and spoke to me and were glad to see me.

I don’t like being visible in this way. To me, It’s not positive. I don’t like being recognized for disability; I’d rather be known for my smile or my style.  I understand that people respect and admire my grit and determination.  This too, is hard for me.  I am just living my life the only I know how to and the only way I can.  It’s not inspirational; it’s just life.  My issues are visible.  Others confront much worse things just not as publicly.

I guess I need to continue because I demonstrate the possible.  I can be a voice and a face against discrimination.  I hate when people speak loudly to me.  I want to say, “It’s my legs, stupid.  There’s nothing wrong with my brain.”  I suppose if my visibility with disability helps others, it’s worth it. Visibility is here to stay.

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.

Postal

Posted on by tresswann

I need to get this out.  Consider it a rant, vent and reflection.

I have been worried out of my mind about my postal worker.  We argued at the end of August about his buying a car.  Yes, ok, I get it.  I have bad taste in men.  We have been friendly since 1984.  About 15 years ago, we agreed we should have married but since we didn’t, it really did work out.

Given that , we have never really argued.  We would separate.  Well, we did have a major fight somewhere around 1986 but it sorted.  I never stood up to him until the end of August over the car. Since he has Parkinson’s and mini strokes, limited income, my feeling was that he shouldn’t drive and could use taxis.

Now, my birthday is end September and he always, always calls me, sends me a card, drops by or gives me a present whether I  have been married or living with someone else. Freaked my landlord out once when they came home and found flowers on the steps.  Maybe not on the exact date but within a week.  This time nothing but I know he’s stubborn and not well.  K is paranoid, for real.  He will not answer unless he knows who is calling.  Also, since the 80’s he always has a piece of music for voicemail.  When I left him for real in 1988,  he had Fine Young Cannibals “Good Thing”  for weeks.  There is no music and the memory is full.

We have always been there for each other.  He came over with blues CDs and Clapton when Buster the Biker dumped me (just before current husband).  And he was a drug and alcohol counselor when he was in the army so he has been very helpful to me as I have been on this journey with my husband. I have listened to him and held him as he has cried over breakups and his father’s death.

As I continued to be unable to reach him, I became increasingly upset.  This is one of the reasons I stand by my husband.  He called all the local hospitals for me last week.  No results.  We were about to do a drive by his home today and contact the police.

Yesterday, late afternoon the cellphone rang with a number in Baltimore.  Ah, another IRS scam, I thought.  Voice mail! From K.  But it’s weird.  There is someone in the background with an accent who seems to be telling him what to say and the callback number is different.  I know he has a cousin in Maryland but I begin to freak.  I rang him back. Someone else answers the phone.  It sounds like he says he is a medical resident, whatever that means.  A twisted tale.  Somehow, K  decided to live with his cousin in Baltimore but now he’s in assisted living?  I saw him at the end of August and whilst he had issues walking, he was competent and functional.  His story is garbled and makes little sense. He says he woke in his cousin’s house and crashed into things. This would be normal as he has definitive mobility issues and has been living in a room for about 10 years.  The cousin called the paramedics and he was hospitalized for 5 -6 days.  He was sent to assisted living.  He is complaining about the food.  He says that they are charging him $5500 a month. On his credit card!  Now, K  has been on postal disability since 1988.  His monthly income is much, much less than that.  We live in metro NYC area so there is no way he has that kind of savings.  He tells me that he has to charge it.  I ask him where he is.  Someone puts the brochure in front of him.  He has difficulty reading it but I get the name.  This whole conversation is a torturous process , clearly not helped by my berating him as to why he didn’t let me know he was leaving.

He is a Vietnam era vet.  He also should be a Medicaid candidate.  This whole thing smells and stinks to me.  I keep on telling him he has to get me on his HIPAA.  He is a Luddite and I get the distinct impression he does not know what I am talking about.   Even though we have been friends for over 30 years, I have no standing.  LOL, that’s the reason I married my current husband – to have standing!

I also explain I am extremely limited as to what I can do on a Sunday.  He gives me his landlord’s name and part of his phone number but also says the guy is a Jets fan and won’t pick up the phone.  I also have his psychologist’s number.  Again, no one knows me.  I knew his first psychologist.  I ask if he talks about me.  He thinks so.

So, this morning I call the VA, landlord, psychologist.  The VA can’t give me any information except to agree that it’s wrong and my best bet is to get a power of attorney.  He is in another state.  His cousin’s name is too common as are his brothers.  No callbacks  yet from landlord or psychologist. I gave them the number K gave me.  I asked K what the number is and get a garbled explanation of patching through landline.

I do know where he was living and my husband says we will go there tomorrow.  Husband is concerned about K’s stuff, too.

My college boyfriend is a public defender in MD.  I speak to him every other year or so. I call him and he calls me back immediately.  He confirms my instincts appear to be right; he knows the neighborhood where this assisted living place and confirms it’s in a bad place; and I need to get the POA to truly advocate for K.

So, here’s another thing.  The attorney and I go back over 40 years and K and I over 30.  K and I always reach out to each other in times of trouble.  The attorney called me a few years back because he could see something was wrong from my handwriting on the Christmas card.  He also was nuts after 9/11 because he couldn’t find me.  When he finally reached me several weeks later, he sobbed.  I hold my relationships.  I was surprised this morning that my husband said it’s a good thing.  He usually mocks me.  I am not sure what it means.  Ties that bind?

I believe in the divine and wonder if I am not working right now so that I can help.  Worse case scenario, we know that I’ll drive down.

I am tired of being strong and responsible.

What is love at the end of the day?

It’s not ringing right  for me.  Has anyone had a similar experience with forced assisted living? Scam? Suggestions?

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.