Lucky 13

 

Yesterday was my 13th wedding anniversary.  I was in the hospital with Tom from 7:30 a.m. till 8:30 at night.  Our original plan had been to drive out East and either have a nice lunch out there or cash in on a restaurant card the kids gave us for Christmas.  Instead, Tom’s been in the hospital since Monday afternoon.

We had no idea thirteen years ago that this is where we’d be. We said our vows in front of a justice of the peace who knew me from volunteer work.  She gave me a lecture on how she disagreed with the public policy  position of the organization.  Then we did our vows.  It included something along the lines of in sickness and in health, richer or poorer, better or worse.  Of course, we said Yes.  Who really understands what that means? Well, we were older so we were not dewy eyed innocents.  We knew that life would hold challenges.

13 years is a not a long time in the scheme of things but we have really beaten up those vows; each and every one of them.

Life with both of us has been challenging.  He has supported me through the death of both of my parents; the dissolution of my childhood home; the loss of three jobs and of course, my continuing physical deterioration.

On his side, his rampant and destructive alcoholism; cancer; hernia and now this cardiac situation.

Monday, we went to the ER for what we thought would be a meds adjustment and maybe Valium.  Instead, a four day hospital stay with two procedures.  Yesterday morning he had a tee.  A scope was put down his throat to see if there were any clots in his lungs that could dislodge.  He came out of that one convinced he was vacuuming the car. Indeed, when he was released today, one of the first things he has done is vacuum!  Lucky me, I have a house husband. In the afternoon, he had a cardiac ablation. Fun for anniversary.

Truth be told, I don’t hold much with anniversaries.  He is the sentimental one.

I never wanted to have my parents’ lives.  Joke’s on me.  I do.  I was so frightened this week.  Normally, I am your best person in an emergency and I still was calm and collected for everyone.  Here’s the thing – when my father died suddenly and unexpectedly, my mother kept on saying “Daddy had a really good omelet for breakfast.”  Well, you know how they say things about your parents’ deaths stick with you?  Sunday night, we had had the best dinner with Justin and Lisa – good food, laughter, conversations.  My mind kept on howling – just like Daddy.

Another way in which I am the same is hiding things.  I am a firm believer in transparency as my parents withheld information on my grandmother’s health.  I never trusted them again.  I share medical details about me and T to his kids.  We found out after my father died how the two of them conspired to shield us about my mother’s condition.  She had dementia.  I found we have done the same with my walking.  It’s not as if they don’t know I have difficulties but in the house I usually don’t wear the spectral leg or use a cane.  On the few occasions we have been out, they know I walk arm in arm with their Dad.  They had no idea how much difficulties I have getting in and  out of the house.  Of course, when I am stressed I am worse.  I have started to have problems with my hands.  I needed help buckling my seatbelt.  Everyone was great to me but I realized how much we have been dissembling.

As you know I was seriously contemplating divorce earlier this year.  Financial considerations stopped me. He thought I couldn’t do it because I literally couldn’t live without  him.  He ties my shoes, fixes my hair, helps with zippers and buttons.  As they say, “needs must”.  I put on my own shoes, dressed and undressed myself and did my hair.  Fed the cats, cleaned their litter. I can do it.  I did not fall.  Stumbled a few times but no falls.  So what if it took me ten minutes to put on my macrame sandals and spectral leg and it involved bent paper clips and pliers!  Don’t ask.

I know I am a control freak.  I acknowledge that one of  the reasons I married him was when he was in trouble I wanted legal standing.  I was never one of those girls with wedding plans. I used to dream of a house and children but no man.  I used to be told it couldn’t be done.  I am a boomer which explains the attitude.

This week made me realize that even though I can be on my own, I don’t want to be right now.  Pondering how we really did do our vows.  There’s work ahead.  There is a lot of pain and anger on each side.

 

Third Wheelchair Ride

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

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

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

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

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.