Ampyra Plus

Well, I started the Ampyra a week ago.  I had fought against taking drugs for ages.  When I finally gave in,  my insurance wouldn’t pay for it.  New insurance pays.  And it’s reasonable.  So, I started it last Saturday.  Yes,   I was/am worried about side effects.  Uh, seizure is one?  Much trepidation.  So far, so good,  no side effects.  And I am walking better!  It’s amazing.  Thursday, I walked 11,000 steps and was not stumbling and half dead, that night or the next day!  I can’t believe it.  I am fearfully optimistic.  On the one hand, I have read the literature.  This is not a cure.  I can continue to deteriorate.  I do not want to think about this.  Here’s where I am going.  I am taking this as a second chance.  I can go back to Zumba.  I need to find my way back to the gym and build those muscles.

This morning,  I went for MRIs.  I have been getting them from a research study.  It was de-funded and the doctor pointed out that it had been two years and since my left side seemed to be having trouble….  This time the insurance is good.  I didn’t want to go.  What is the point?  I know things have changed.  There’s nothing they can do, so why?  Of course, I had to take the spectral leg off for the MRI and the tech wanted to wheel me into to the room in a wheelchair.  NOOOOO!  I stumbled and gimped on it.  Puhleez!

And I am on a roll,  yesterday I went to get a new spectral leg.  I was shown one that had two thin metal strips in the back but my ankle is too wobbly.  However, there is a graphite one with a thinner back and slimmer sole.  I may be able to wear  nicer shoes. I hate, hate looking disabled.  I am like a newscaster behind a desk – everything looks good until I stand and walk!  I am very vain and ugly shoes impact me.  And I don’t buy what some of my friends tell me about being older and not wearing heels.  Okay, I wouldn’t want to wear stilettos anyway but I see no reason why I can’t with practice and determination get back to kitten heels.   Let’s not even consider crutches or wheelchairs.

My goal is to go back to wearing spectral leg only to and from work and to ditch the cane.  Build those muscles.  So, I need to amp the clean eating.  I am on my way.

April Warrior Check In

Back for April:

How do I feel today – Perkier today than in a couple of weeks.  I have had a lot of stress, frustration and pressure around my work.  I think my husband is slipping.  He definitely did and now I have no trust.  And although today was the first day all week, I could walk freely,  I took a bad fall in the subway.  My husband was with me and he couldn’t stop it. People always bad mouth New Yorkers but a man helped my husband pick me up off the platform and people held the elevator for me and this was rush hour!  I walked more today than all week combined.  I thought I really hurt myself.  We will see.

What did you do for yourself today?

Well, I blogged,  had lunch with some friends.  I am not working tomorrow, resting, reading and doing fun things.

What did I eat today and how did it make me feel – Mixed, though mostly good.  Granola (homemade) for breakfast and snack,  orange,  uh two Lindt chocs,  sushi for dinner and half a slice of my husband’s pizza.  I feel it, gave me a headache

Did I exercise? What did I do? How did it feel – Still not going to the gym or Zumba.  Due to more falls back to square one with abs.  Have been on treadmill and Wii.  Need to find the original DVD because of the balance issues.

For whom or what are you grateful? What matters most in life?   Grateful that I didn’t seriously hurt myself in my fall.  Grateful for the kindness of strangers.  Friends and family, health are what matters most.

Do I have a higher purpose or driving force in my life?   Make a mission statement – Higher purpose still not defined.  Beginning to dream again.  Too heavy for me.

How long have I been treated with conventional medicine Not this month but I have appointment with doctor on Tuesday and am going to try for the Ampyra.  And yes,  I am going to do my best to eat right this month

The first time I had a symptom – June 2004 walking on the beach boardwalk

What symptoms are most troublesome – Getting really slow and bad at walking and not being able to get on and off the train.

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this.

How is stress level? It’s high.  Now I am really frightened about how things are going down.

What can I do tomorrow to make it better than today?   Start over.  It’s a new month. Rest and do art.  Eat right

Until next month.

Poster Children

I have a thing about poster “children”.  When I received my initial diagnosis, me being me, I said let me learn everything about it, I can.  I am notorious for doing my homework.  First thing, we reached out to the MS society.  My diagnosis, which I reject or maybe deny, is PPMS.    Actually, I reject but that’s another day.  So we receive their packet.   Talk about poster children.  The PPMS brochure has woman in a scooter and she talks about how wonderful it is now that she has her scooter.  F’ing excuse me?  Not only is this not what I want to hear, it’s a piss poor message as far as I am concerned.  So, how I am going to cope and fight with this disease is bop around on a scooter?  Really?  Not me, not yet, probably God’s willing not ever.  We start with surrender and acceptance?  Not working for me and I don’t think it should!  We scratch MS society off our list and decide to fly solo.

Next, just this month we receive the newsletter from the Institute that’s treating me.  Monitoring is actually a better description.  See inspiring story on page…  Flip to page.  Another woman saying she wept buckets when they told her to use a cane  but now it is sooo wonderful.  Well, I didn’t weep when we had that conversation. I argued and acquiesced.  I don’t cry as a rule in front of other people.  I work really hard at not crying about this.  When I do, it’s usually frustration and rage as oppose to fear.  I have to use a cane now most of the time in public and it is so not wonderful.  I understand I do need to be safe.

What kind of message is being sent?  Are we Victorian?  Am I supposed to lie back and think of England?  I get it about false hope.  But what about possibilities and determination?  They don’t seem to fit in this “traditional” setting.  Well, I worked for years in fashion and was always considered trendy so this is my take.  Screw these “poster children”,  my trend is not to go quietly into the night or anywhere, not to surrender and not to accept defeat.

Broken Canes, Mary Poppins and Peter Pan

Last Monday morning I started off to work.  It was the first time I think in weeks that I was going to work and in a skirt.  No clunky snow shoes.  I had on my regular granny nanny tie shoes.  I was feeling positive.  As I got on the escalator the handle of my cane felt weird.  Hmmm,  I didn’t realize it was jointed.  I use collapsible canes.  And until the last few months didn’t break it out until I was in the last leg of the way home at Penn, then tucked it away on the train so when I stepped out it was safe in my back pack.  That being said I also go with pretty.  Not for me those orthopedic metal looking horrors.   In fact, we argued with my Dad when he started using one for whatever reason, we got him an Irish walking stick.  My first one was black with multi colored butterfly.  This one was dark purple with flowers.    I get to the top of the escalator, stop to adjust backpack and the handle split apart and flew off.    Two men who are on my train picked up the pieces and handed them to me.  OK so I am missing the handle but I still have the stick part, just about the same height, no problem, right?  Wrong, wrong, wrong.  It devastated me to realize that I couldn’t walk in empty space without it.  When did this happen?  I stumbled and staggered to the bus.  Then I had to walk the block to the office.  I held onto a marble barrier.  Didn’t see my friend who sometimes crosses with me.  There is a security guard who watches out for me and he was coming into work and helped me up the steps and into the building.  The building is a city block so I had to prop myself up another 3/4 block to get to my floor and then walk half a block to my desk.  I was shattered.  Being nervous made it so much worse.  During the day at work I don’t use the cane unless I go to another floor.

I recovered a bit and came up with Plan B.  I did realize as soon as it broke that there was no way that I could walk and do my subway usual without it and was going to take a cab.  My stagger into work when I wasn’t fatigued, was horrible.  So I initially thought cab, not happening!

One of my friends volunteered to go down to Duane Reade and get me another cane.  No,  I have a pretty spring one at home. My friend, the receptionist, usually has a golf umbrella.  My thought, it’s the right height with a handle.  My other friend goes to get it.  I call husband who says are you crazy?  I’ll come in with spare cane.

He calls and tells the kids that he pictures me with the umbrella being lifted up and sailing over Grand Central, like Mary Poppins.  Kids haven’t stopped giggling.  And sometimes, he makes me feel like I am being dragged by Mary Poppins when he tries to make me walk faster and longer.  I am skimming above the sidewalk.

And me, I miss being Peter Pan.  Didn’t ya think you could fly like Peter when you were younger?  I did.  I can see and feel it in my mind.  And I want to be Peter again.  I want to be free and soar outside of my body again.  I will figure this out!

Men, Gypsies and a Funeral

As I said, Joebe passed away last week.   He always called me a Gypsy.  And it wasn’t always positive.    He used to tease me that I could and did move all my belongings in a cargo van.   I had nothing and was free.  Since I married this time, I can no longer move in a cargo van.  I am weighted with both possessions and responsibilities.

Joebe said I was a gypsy and committed to nothing.    He was of an age where he also meant it in the non PC sense of it.  I was amoral, free, uncommitted.  I remember the gypsies of my youth.  I spent the first few years of my life in Coney Island.  The Gypsies would come every spring.  We were always warned that they stole little children and we had better stay close.

Sometimes I didn’t mind when he called me Gypsy because it meant that I was still holding onto that part of me that was uniquely me.  Lord knows he tried to change me.   Like I have said, I have been trying so hard to remember the happy times.  I really can’t.  Every memory just twists.

I met him dancing.  And he was a great dancer.  That’s what won me over. But we didn’t dance because of his jealousy.

Also, after I left my first husband, I wanted to go out with a man who took me to dinner with tablecloths.  My first husband’s idea of dinner out was Fuddrucker’s.  Joebe took me to nice dinners but they were unpleasant as he always accused me of flirting with the busboy or the waiter.   It became easier not to go.

I have always worked with men and gotten along very well with them.  It’s part of the all boy college deal.  During that time, I worked with men and I used to go out with them for what we called burgers and a belt.  I used to stay at my parents and tell Joebe I was eating with them.  With anyone else I could have and would have told the truth.

At his daughter’s rehearsal dinner,  I sat next to her, not her mother.  By this time, I had left him.  But he was always telling me “Pretend to be a family.”  He had had issues with his daughter and had not wanted to go to the wedding. I insisted but I was the one who walked out of the dinner.(I did go to the wedding)  She is 10 years younger than me almost to the day.    So, I would say we really didn’t get on.

Sunday,  I walked into the funeral home.  I think it’s the first time I saw her since her wedding.  She had been the one to initially call me and tell me that her father was in intensive care and she wasn’t sure she had the right person. I got her brother when I returned the call.  She broke away from the people she was with and grabbed me and began to sob.  “Susan, when we went into the house, there was a huge picture of you in his bedroom.  My dad always loved you.  He never stopped loving you.”  This was so hard to hear.  First of all, within weeks of our getting together he practically demanded that I tell him I loved him.  Different generations – what’s love got to do with it.  I was the gypsy rolling with the tide, looking for my good time.  I never told my first husband I loved him.  It’s not something I do.  I hold love close to my heart, my hard gypsy heart.

It has made me reflect what impact do we really have on others?  When I left my first husband, he was more upset I thought about losing the curtains (I took them off the windows) than me.  Joebe told me we were supposed to get married and he was going to be short the money I gave him towards rent.  We did things together afterwards. i.e. daughter’s wedding but I wouldn’t say we were friends.  I do love my friends.    I can’t ask him what was going on because he is dead.  It’s sort of like an open window but one that you really can’t see through.

Of course,  there was the rest of the family to see.  I did love his granddaughter and losing her when I left him broke my heart.  I kept distance from my now husband’s children and his nieces because I didn’t want that hurt again.  I am loosening up a bit and admitting that we can love each other.  Seeing Gabby almost made me cry.  She’s just about grown up and of course, doesn’t remember me.

Now, men.  My husband and I have had many problems and we have come out alright.  Our marriage is strong.  He stood next to me and listened to hearing that another man had always loved me.  He walked into a room of strangers to him that had been family to me.  He literally held me up.  No cane and no one said anything about my walking.  He totally supported me in all ways.

Someone who has this condition said something along the lines of how do you forget you have this?  Well, Sunday once my husband helped me in that door, my condition was the last thing on my mind.  I am larger than this.

So, I am beginning to have memories, not bad ones, just memories.   I hear his voice in my head.  And I am beginning to realize that I’ll never see or hear him again.  That’s the way this works. He’s not the first relationship that I have lost but he was the only one I lived with.  You always think you will see them again and you can be like Bellbottom blues or just surviving.  I was always tickled that I survived Joebe.  Now, there’s this unknown area.

And here’s what’s weird. Joebe gave me amber earrings.  I wear them at least once a week.  I went to put them in on Monday and one fell on the floor and shattered.  Gypsies and dreams.

Mortality, Perspective and Balance

Mortality has been on my mind a lot.  It’s a milestone year for me and I am feeling it, particularly since my mobility is impaired and seems to be worsening.  I hope I have many years ahead of me, good years but you just don’t know.  I live fairly locally to where I grew up so I was reading the local obituaries to see whose parents had died.  And then people’s ages were getting too close to mine and I even knew some of them.  It started to drag me down so I stopped.

Last week I received a call that one of my exes had a massive heart attack and was in a medically induced coma and the prognosis was not good.  This was someone I had lived with for a few years.  When I left him, he said “But we were going to get married”  Nice of him to let me know.  He wasn’t the first.  I left someone else who then showed me a polaroid of the engagement ring he was paying off on for me.

Joebe passed away on Thursday night and I got the call Friday.  I really thought he was stubborn and cantankerous enough to come out of this.  He never regained consciousness.  This is who he was, he thought he was having a heart attack so he drove himself to the doctor.  Just what they tell you not to do.  My husband has been upset because all week, of course,  Joebe has been in my thoughts.  I have been reminiscing. He doesn’t mind the reminiscing.  They are not happy memories. He does not like that.   I cannot help it.  I am trying hard to remember some happy times.  He was controlling and emotionally abusive.  It is what it is and he was physically abusive just that one time.  I tried explaining to my husband that remembering the bad times is not bad.  I put on the card for the flowers “You changed my life” and he did.  I learned all kinds of things about myself.  I learned how much stronger I was than I thought.

It’s ironic, it’s March.  I met him in March, 21 or 22 years ago.  I never go out on St. Pat’s but a friend, Joe S asked me to go with him as a favor to some event or other.  Joe T called and asked me to hang out so I said next week.  Next week, I went to hang with Joe T and met Joebe.  My parents couldn’t stand him as he was much older than me.  I was living at home after my first marriage broke up and he would call and say “It’s Joe”  and they would say “Which one?”  Drove him insane.  He was jealous and insecure.  He did make me look at where I was jobwise.  I had fallen on really bad times when my first marriage had broken up and was answering phones.  I applied for another job like that and he told me if I kept on looking at the same jobs I would be in the same place.  I left him when I got the job I have now.  At the time I jumped my salary by 50%.  With bonuses the first year, I made more than he did.  We never really stopped talking and this truly irked him, a man of his age being bested by a little girl. He never thought I was very smart and I am.  I am one of the first women at an all boys school and he always said that I got in because I was a girl.  We went to a 25th anniversary of the admission of women and the former president said that admissions my year were blind.  It was incredibly liberating.  Joebe scoffed and said they lied.

He bought me a house.  One of the reasons he bought this particular house was the day we looked at it, three swans floated up.  It was on water and I am tresswann.

I am preparing to go to his funeral this afternoon with my husband.  My husband always maintains that Joebe was my husband.  I lived with him longer than I did my first husband and had more of a relationship with him.

I have kept on saying all week, this is weird.  This afternoon is going to be weird.  I was at the wedding of both of his children, the christening of two of his three grandchildren.  He was one of 5 brothers.  The family liked me.  I have not seen these people in years.  I am going to have to walk into this with a cane.  My husband says to leave the cane behind and he will hold me.  I am blessed.  Things work out the way they are supposed to work out.  I had a really close friend die when I was with Joebe.  He knew him.  He refused to come with me to the wake or funeral.  Walking in alone was one of the hardest things I had done up to that point  in my life.  See, what doesn’t kill you will make you stronger.  Today, I will not be alone.  I will be supported by love.

So, perspective too.  On Thursday, I received a call from my agent indicating that he had been told I am not getting a raise for this year.  Can I say livid is too mild a word?  Yes, I worked remotely for most of January and February but I put in mega hours.  I give heart and soul and do excellent work.  I am not just saying this.  And I am hurt by this.  I will address it when I get into the office this week.  But coming in conjunction with Joebe’s death, it’s time to take another look.  If they think I am doing a less than adequate job which is what a non raise indicates to me then I can and will cut back.  If I cut my hours, I cut my income.  What’s money at the end of the day as long as the bills are paid?  Working less hours will let me get home earlier and when I am home earlier and not putting in extra hours, I can do more “me” stuff.  How about the gym? How about art and writing?

I am a Libra and as odd as it sounds, I need to be in balance.  I have been out of balance.  This manifests itself in my health.  Oh, and a side note on stress, I left Joebe and started a new job all in the same month, not too crazy.  I am moving towards this milestone birthday with trepidation.  I am taking these two events as a sign to get back in balance.  Maybe regain my physical sense of balance. We truly do not know when our last day will be.  I don’t want the rest of whatever time I have to be filled with regrets or what ifs.   Carpe Diem.

March Warrior Check In

Back for March:

How do I feel today – Mixed blues.  Despite the fall and my face, we ran around a lot today.  First thing, we went to Trader Joe’s and Omaha Steaks.  No, no meat for me.  Husband’s youngest just got his first apartment and we filled their freezer.  Then on to the Chocolate Duck, again not for me, getting a class for a niece and Easter Egg supplies for the kids.  Then on to sister in laws to drop off things and pick up Girl Scout cookies.  Not for me.  I don’t eat them, ever.  Visit kids with food, flowers and pyrex for housewarming.   I gimped through everything very frustrating and depressing but I still get going.

What did you do for yourself today?

Well, I blogged and then I am going to make a wrapped bracelet.  And it was fun shopping.

What did I eat today and how did it make me feel – Sigh.  Not good.  I started the morning with coffee and a piece of Christmas pudding.  Toffee crunch after trader Joe’s.  A streusel apple spelt muffin.  Quinoa chips.  Dare I say, steamed pork buns for dinner?  But I have been really good all week, smoothies and salads

Did I exercise? What did I do? How did it feel – Still not going to the gym or Zumba.  Still housebound, still doing the stepper and recently added treadmill.  I am working my physical therapy back in.  Hurt in falls so I am back to square one with Abs.

For whom or what are you grateful? What matters most in life? Grateful as usual to be warm safe and dry.  Grateful that I didn’t seriously hurt myself in my fall.  Grateful for the kindness of strangers.  And my job.  And my stepsons are awesome.

Do I have a higher purpose or driving force in my life?   Make a mission statement – Higher purpose still not defined.  Beginning to dream again

How long have I been treated with conventional medicine Not this month but I think I need to go to the doctore.

The first time I had a symptom – June 2004 walking on the beach boardwalk

What symptoms are most troublesome – Duh, gradually losing my ability to walk and being dependent.  And the falling.

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this.

How is stress level? It’s high.  Now I am really frightened about how things are going down.

What can I do tomorrow to make it better than today?   Start over.  It’s a new month.  I still have new days.

Until next month.

Falling Flat on My Face, February and Fragility

February has been a hard month for me.  I ended up going into the office only 7 days between the extreme cold and the weather.  I am lucky to be able to work from home and got tons done.  Also,  I welcomed the rest,  few 4:15 a.m.s.  Excellent.  The flip side is I have a tiny house and even to get up and walk to the bathroom, I don’t get in enough walking.  I work in a building where each floor is a city block.  Depending on what my schedule is I can literally walk miles at work.  Ok so now it’s with a brace and a cane but still.

Went to work on Wednesday and took a cab in the morning.  The bus stop was icy.  I went out to lunch but it was only across the street.  My New Year’s plan which has been derailed by the weather is to go to lunch once a week.  I need to reconnect myself.  I swore when this whole thing started that I wouldn’t let this condition/disease confine me or define me.  And just like my ability to walk, it gradually took over.   I am fighting back.  Wednesday night I felt ok and thought I would do my usual Grand Central, Times Square Penn Station deal.  I left work early so I could take an earlier train.  It’s on a track with an escalator so it’s closer and I walk less.  Well,  I started to fall apart in Times Square.  The train is the 4:12, I was on escalator at 4:11  and the bartender literally held the door for me.  I struggled into a seat.  The ride is an hour and that is enough recovery time for me.  My station is the last stop and almost everyone is gone.  I got up and was in the door when the train pulled in.  I got off carefully (I have to hold on) and thought Ok that’s good.  The next thing I remember I was flat on my face with gushing blood.  All of a sudden, thankfully, there were a lot of people on the platform.  Someone asked, “Are you alright?”  Normally, I am very perky and reassuring.  This time I had to say, I don’t know.  Two many literally lifted me up as if I was a rag doll.  Oh, and another thing.  I am not prone to profanity but after saying I don’t know, I added, “I really f–ked up my face, didn’t I” .  I have not fallen on my face in more than 25 years.  The last time I did I was 24, drunk and dancing in a bar in the Hamptons.  Life does change.  So they raised me and my gushing face up.  A businessman provided tissue and blotted at my face.  I thought I had literally split my lip.  Nope.  I am blessed and lucky.  And my legs felt great.  My face took the brunt of this fall.  Now, the railroad guy comes out of the train.  They want to get me medical attention, file a report, get me a cab, call someone.    No.  My husband doesn’t drive.  I refused.  This station doesn’t have an escalator or elevator so I gimp down two flights of concrete stairs normally.  A man offered to help me down the stairs.  I had a knapsack and a pocketbook.   He showed me a badge and said he was a federal officer so my things were safe.  I didn’t care.  I said anyone is welcome to it.  He was great!   He helped me down the stairs which did have patches of ice.  And he got me into my car.  Husband freaked.  Yes, it looks like I went rounds with someone.  He thinks it reflects badly on him.

Then I went into work the next day.  This is the kind of place I work in, people came in and said nothing!   I have a swollen bloody lip,  a scraped bloody chin and huge bruise under my chin.  Husband thought  it would be a problem for me.  If I fall, will they renew my contract?  Actually,  I felt worse when I got into work.  It hit me, all the might haves.  I have been so lucky and so blessed.  This could have been so much worse.  Thursday night, there was almost no one on the platform.

As I have struggled this week I have been thinking.  I changed the way I eat significantly.  Okay, as I have admitted, I have not gone full force.  I still eat sugar. It’s significantly reduced.  Dairy and eggs radically down.  Never much of a red meat eater but more minimal.

I am getting worse not better.  And I hate when people try and whitewash it.  And I know I am lucky, truly.  I am still walking and I am not going to stop.  This month was rough as I couldn’t literally get out of the house.  That meant much less walking though I did try to do at least 30 minutes on the stepper every night.  I couldn’t get to Zumba or the gym.  In fact, I was planning on going to the gym Wednesday night and breaking the ice so to speak.    So, amp up the food plan and the exercise.  Keep moving forward.

On to fragility.  The cell rings yesterday and I am working.  I see it’s my one of my exes.  It’s a wild, wild life.  I keep in touch with all my exes, all the live ones, except my first husband.  I do have two dead ones.  Stories for another day but both died when I was young, one of AIDS, one of cancer.  And yes, for years I had the spectre of AIDS hanging over me.  The one after them said I am never breaking up with you.  Men who leave you die.  Well, I left him and he’s still alive.  After that, I was the one that did the leaving.  I lived with the ex whose number showed for several years.  It was not healthy.  He is significantly older than me.  We would have conversations and he would mention an event and ask if I remembered.  My response was usually “I was three!” or “Uh, I wasn’t born yet.”  We maintain cordial relations but he still can be controlling and domineering.  I let it go to voice, picked up the message and it was his daughter saying we think we have the right person, you lived with my Dad, he’s in cardiac ICU.  I called back immediately and reached his son.  He told me that ex is in medically induced coma, had massive heart attack and they are reaching out to the people that were important in his life so they are not surprised. I am devastated.  He’s tough and ornery so I am not counting him out .  It’s ironic.  He hit me once in the face and the next time, because there always is a next time, I punched him in the chest before he could touch me and knocked him out.  There never was a next time after that.  He said “You could really have hurt me”  I was “Exactly”.  I left. We made our peace.

This is all, the fall, the deterioration and the ex, making me feel fragile.  I am tougher than this.  It literally hurts to smile right now but I am trying.  I can and will rise again.

Fatigue, Fantasies and Husbands

I fantasize about sleep.   I count days and hours until I can sleep.  I roll over in bed and think either this time tomorrow I’ll be sleeping or this time tomorrow I’ll be awake.    I have to get up for work some time between say 4:10 a.m. and 4:30 a.m. four mornings a week.  One of the effects of the condition I have is supposed to be fatigue.  However,   my doctors say with the hours I keep, who can tell?  I see their heads nod and eye droop when I describe my hours and my schedule.  They say anyone would be fatigued given that schedule.  And I am getting older.  It’s just a fact.  I have read that as we age, we need less sleep.  NOT!  Ok, so maybe we don’t need it to grow, that doesn’t mean our bodies and minds don’t want it.

I keep memories of a good sleep like notes on a good bottle of wine.  I still remember the sweet deepness of sleep the night of Hurricane Sandy.  I had one almost as good the night of a blizzard last month.

I guard my sleep ferociously.

I have been to the office only three times this month.  Yes, a few hours more sleep but much less walking.  Here’s my vicious cycle, the less I walk, the less I am able to walk.   We have been trying to compensate by having me do the stepper every night but still I have been coming in at most around 5,000 steps.  A normal day for me at work is over 7,000 and I used to get to 10,000 or more.    I did go into work this past Thursday and could barely walk.  It was bad.  My husband doesn’t understand that I just can’t stop when I am working remotely and do 15 minutes on the stepper. Plus, it’s not the same as walking.  I have tried to get in 30 active minutes a day.

Yesterday, we set up the treadmill upstairs.  My plan is to go on it in the morning when I drink my coffee.  We’ll see.    Yesterday I struggled to do 5 minutes on it.  My goal for today is 6 minutes.

Confession – I have been lax with my PT exercises.  I was really on it for awhile and then it just started fading away.  I was doing abs every night and then I fell.  It hurt too much.  I am hoping to start again this evening.

Cut to last night.  3:50 a.m.  Husband gets up.  “I have been thinking and I have decided”.  This is when I call him Jack because he sounds just like his father.  ” You know I dream things through, you know how I used to help you with your exercises?  Well, I really can’t now because of the operation”.  Then he went through all the exercises I am supposed to do and what he could or could not do.  Told me I couldn’t do 10,000 steps today as I had only done 3500 yesterday but I would do 6000 today.  I would do the PT twice on weekends but not during the week as I certainly can’t get up before 4.  And maybe, he will create a spreadsheet to track everything.  Now I know he’s talking in his sleep because spreadsheet is not a word he uses.  He has the remarkable ability to have complete literate conversations when he is completely asleep.   And I am looking at the clock thinking “this time tomorrow I will have 20 minutes more to sleep”.  I can’t hit him because of the operation.  I drifted off.  This morning he has a vague recollection of the whole thing but says it goes to show I am always thinking about you.

Valentines and Visions

Last night I was in the recovery room as my husband was coming out of anesthesia, he looked at me and smiled and said “I am glad.  We have been through so much and we are still here”.  And it’s true.  We have been married for a little over 10 years and known each other for 12.  Sometimes, we joke that we have been through more in our short time together than most couples in years of marriage.

I was thinking about that last night.  We have been through quite a bit.  Literally, a year after we met my father died suddenly and unexpectedly.  I was left with a mother who was in a financial mess, had dementia, though I wasn’t acknowledging it at the time and an abusive brother.  A week after my father’s funeral, my husband (we were not married at the time) was arrested at my mother’s house on old charges.  This was in the beginning of November.  In mid-December, I went for my mammogram and they found a lump in my breast.  He was still in jail, my mother was shattered. It was a false alarm.  T was released from jail at the end of January.  My brother was taking things from my mother and making abusive and threatening calls to me.  I obtained a temporary stay away.  On April 1,(not an April fool’s as some would have it)  I was told my job was being terminated.  I was relieved but I was financially responsible for my mother’s household.   T and I started going in and out of court fighting with his ex-wife over myriad issues.  Little did I know that I was about to become a regular at court, so much so that the court officers recognized me! We married. I got another job, a very good one as corporate training manager for a major retailer.  During this period,  my mother would call with problems and I would ask her if my brother couldn’t help and I was told “oh but your brother has a job and works”  Uh, he’s  a truck driver?  This put enormous strain on us.  My previous (and current employer) called and asked if I could do a project, so I started doing two jobs.  The day after I told them, it was too much for me, the retailer filed for bankruptcy and I lost my job – two in a year!   My friends teased me that I was off for the summer again!

Nightmare time.  I called my mother in the morning and she didn’t answer.  Drove over thinking she had left phone off hook or was confused because by now she had been diagnosed with dementia.  I found her on the floor with a broken leg.  Due to different factors, they couldn’t operate on her for three days nor give her painkillers.  My brother went to work.  Husband stayed with me as they operated.  Brother threatened me in nursing home when she was in recovery and nursing home went along with him.  Husband was besides himself.  We had to sell my mother’s house whilst she was alive.  You know how hard it is to dissolve your childhood home after your parents die?  Picture doing it when one of them is still alive.

The summer I lost my first job was when I had my first incident.  I was walking on the beach boardwalk and couldn’t.  Fast forward a couple of years and continued odd incidents and the doctors started.  I received my diagnosis after an inconclusive spinal tap.  Like my husband told them, when you don’t know what to call it, this is what you call it.

After I sold my mother’s house we bought a house less than 6 months later.  See, the pattern, stress and more stress.  And boys totaling cars.  The youngest did two in 24 hours.  And boys in emergency rooms…

My mum died.  What is important is that we had not been together that long. We were still in court with his ex and now also because of our issues. My husband has always had alcohol problems.  My diagnosis, death and finances set him off and we entered a series of rehab and relapse.

He was diagnosed with prostate cancer.   There were complications.

Everyone told me from when our problems started that I needed to cut my losses.  The courts, the counselors, my friends said the odds were clearly against us.  And through out all of this, I had  this vision of the two of us walking out together, arm in arm, beating the odds.  Well, it took longer than I thought or wanted.  We came through.

The last time he had an operation, I walked out on him.  Yesterday, I was there the whole time.  We are truly partners.

So, visions.  I told T last week that just as I had this vision of the two of us beating the odds,  I am picturing myself walking again, arm in arm on the beach, wearing the clothes I love, dancing, doing the things I love, no limits, no boundaries.  It’s just this vision that I am keeping in my head.

Valentines and visions.  Love.  I believe that is the root of what brought us through.  And I am going to make my new vision real.  It may not happen when I want it to happen but it will happen.