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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.

 

Jennifer’s Way, MC and Me

Posted on by tresswann

Recently, I read Jennifer’s Way by Jennifer Esposito.  If you don’t know, she’s an actor who suffered for years with undiagnosed celiac disease.

This is a must read even if you do not have a celiac problem.  If you have been on a journey to discover what’s not right with you, this is informative.  It took her years and tons of money.  What hope do the rest of us have? It also reinforced what I have learned on this journey.  It’s up to you.  You are the one who needs to do the research.  You have to keep on asking the questions, over and over. And then, question it again.  It’s up to you to coordinate it all.  This is brutal because to begin with the reason you are on this journey is something is not right.

Three years ago, I started playing and playing is the right word with diet for overcoming my condition.  That’s what we like to call it “MC” for my condition.  A doctor told us that’s what we call it when we don’t know what it is.  And no, not MC.  My belief is, if you name something like that, you give it power.  So, I may be in denial but  that’s how I deal.  Anyhow, just for fun, I cut gluten for one week.  Then I went out to dinner and there were popovers.  Can I tell you, I got a headache immediately.  Yes, there is definitely a relationship between my walking and gluten.  I had an iron stomach as a child.  I could and did eat anything.  And it fascinated my father, who was afraid of vomiting, that I could throw up, most times, and return to the table.  I was sure when this started that I  had no food sensitivities.  I was told that when I was little I was allergic to peaches.  My mother would not have that and fed me little bits until I could eat peaches.

After the gluten, I stopped dairy.  I drank tons of milk as a child.  I only stopped when my brother became chubby and we switched to skim milk.  I also had yogurt for lunch most days.  This started when Dannon was the only yogurt and there were only 8 flavors.  This was hard for me.  Guess what?  The stubborn weight dropped off!  And something else, it was always a family joke.  Right after I was born, the people from my father’s office came to visit.  I passed gas so loudly that this woman nearly dropped me.  Ahem, once I stopped dairy that stopped, too.

One of the things discussed in the book was the hereditary nature of things.  Hmmm.  Another thing that immediately struck me was that for years, Jennifer lived on Pepto Bismol, ginger ale and crackers.  So did Daddy!  I knew once that he really loved me when he gave me his bottle of Pepto when he was leaving me at uni.

I drifted back slowly to the gluten.  Not a lot.  I’ve never really been a bread or pasta fan so no problems there.  I do stay away except for pastry and the occasional piece of cake.  No yogurt but yes to ice cream. I’ve noticed in the last few weeks, yeast triggers stomach pains and weakness.  Oh and secret vice, frozen condensed milk.  I get violent stomach cramps.  Hmmn

It’s just about a month to my birthday so here we go again.  I am going to strive for no gluten or dairy and see what happens.

Read her book.  See what journies it leads you on

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.

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.

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.

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?