Mourning Clothes

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.

Crashing

Well, the doctor did tell me to use the walker, at least till I meet with the rehab specialist.  I rang this week and he doesn’t accept my insurance,  However, he will see me at a clinic.  Tom doesn’t like that but we are just going to have to suck it up and go.

I have been unable to go to the gym this week as Tom is on another binge.  Aside from  the fact that the gym and liquor store are in the same center, he’s been too drunk to really go out in public.  It is what it is.  So, as an alternate measure and part of my plan anyway, I have been doing the stair stepper as much as possible.  The  most I’ve reached is 6600 steps, not enough.

So, what I did on Thursday, was lock the room door.  It is the only room in the house with a door.  This allowed me to do some thinking, writing, reading and even watch programs that I like while I did the stepper. I did get a bit wobbly.  Tom spent most of the day passed out.  After 5, I unlocked the door.  Dunno why.  Just did.  And years ago, he did destroy the door so it’s not like it means anything except symbolically.

The last few weeks I have felt myself deteriorating.  Ever optimistic, I have tried to attribute it to the intense stress that I have been under as well as the lack of activity.  In order for me to take control, I took the walker out from behind the door yesterday.  I need to practice with it before I use it outside and frankly, I needed the extra support.  I almost  never use the spectral leg or cane in the house but I guess life is beginning to change.  I struggled not to weep.  How did this ever come to pass? How can I consider this a viable option?

It happens sometime after you become an    adult.  You walk down the street and see a reflection in a window.  Who is that adult that resembles you if you were grown up?  Wait a minute!  It’s you and you are grown up.  The next step is inevitable.  You catch sight of yourself and….  Yes, I see a little, fragile, misshapen old lady.  How the hell did that happen?

It’s after 5 and I felt a bit weakish.  I didn’t have the cane in my tiny room.  I went to sit down and somehow I didn’t sit on the chair correctly, lost my balance and fell.  I fall well but still make all kinds of noises along the way down.  Tom had been passed out in the other room.  He rushed in bloodshot eyes and all.  This man does not wake up well in the best of times.  I was flat on my back on the floor.  There’s an upside to everything.  Due to drunkenness, I had  a bag filled with bags of tea on the floor.  It was supposed to have been taken upstairs and out of the way.  I can no longer go upstairs without help so it was lying there.  Lucky!  My head hit tea instead of the floor.  So there I was.  I wasn’t hurt but couldn’t move.  This is a man with three sisters and I think he might have played with dolls or maybe not because he has no concept of how real limbs work.  I literally can’t sit up.  First order of business is to get me upright.  He pulled but I have no strength at all apparently in my core.  I slid back down.  It took awhile to explain I needed something to hold onto to keep me in a seated position.  We get there.  Next step is get me to stand or into a chair. Ha!  This is when I discovered my right leg  no longer works.  It cannot bend .   I cannot even cry.  Picture this.  Sometimes, I have problems getting out of the tub.  I lift my right leg with my arm.  If it doesn’t stay up, Tom comes in and lifts it for me.   I explained to Tom that we were going to have to do the same action but not in the tub.  He was still fuddled. Back to I do not have doll limbs.  The video would have gone viral.  Somehow, we got both legs bent.  Then  I flipped over like a bug.  Somehow, I managed to pull myself up onto the chair.  Tom stumbled back to bed.

This was a pretty devastating evening.  I knew I had deteriorated but not to this point.  I guess I need to buy one of those I’ve fallen and can’t get up devices.  I am so scared and frightened.  I WILL NOT BE IMMOBILE.  I WILL DANCE AGAIN.   I must be delusional.  The only thing to do is fight harder  Someone just told me today, in another matter, that my persistence paid off.  I guess I need to keep it up.  I am losing strength all around and crashing

Yet Another’s Doctor Visit – Digress and Progress

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?

 

Firsts and Hopefully Lasts

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

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

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

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

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

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?

Out of Work Summers – Beach and Bleach

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

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

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

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

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

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

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

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

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

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

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

 

June/July 2016 Check In

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

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

How did I feel this past Month?

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

What did you do for yourself this month?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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