Doctors, Drugs, Disability

Back at the doctor’s Friday.  I was hoping for her to be able to get

Ocrelizumab.  It’s not yet available.    There is a similar drug but it is not approved for my disease:

Rituximab.

It’s a 5 hour infusion and then in two weeks, another one.  Every 6 months.  So, here’s the thing, side effects.  I could get shortness of breath and they slow the drug.  I could get more colds and infections.  Long term use might lead to cancer.  And of course, death though rare.  I HATE  needles let alone I.V.s.  However, I think I am going to suck it up and try.  I looked it up and it’s chemotherapy.  Kinda  scary.  Also, it’s been around for years.  The problem is insurance may not pay as it’s off label so I may have to wait till next year for the Opera.   Has anyone used this?  What do you think?

 

The other thing is Biotin.  I had obtained it just before I was let go and at $148 a month.  It wasn’t happening.  There is a new source and it will cost $60 a month.  It’s worth a try – $2 a day. Apparently, this looks good. Anyone use it?

 

Now there’s other things going on.  I have had a hard week. I got rejected again for a job.  It’s one for which I should have been a contender.  It was exactly what I used to do.  I had to create two presentations for it.  I was notified late on Friday for Monday.  It was my birthday and New Year’s dinner, too.  I put in hours and it was good.  No go.    It was across the street from where I was and it was difficult for me to walk there.

So, at this point, it appears that I am no longer going to be able to work in corporate America again.  I have hit the trifecta – woman, older, disabled.  This is so wrong.  I can’t even begin to address this.

 

The doctor is also in NYC.  I couldn’t do it without my husband.

I have collapsed recently in the bedroom without hurting myself but scary.  My balance has also been wobbly.  The doctor says that’s due to my weakness, not the drug I take.  My fingers are weaker,  My walking has gotten worse.  My theory?  Not going out to work every day has taken its toll despite the gym.  And she agrees, stress of not having work is negatively impacting me.  She’s finally admitting stress can be a factor.  I deal with extraordinary stress.  I have just started counseling.  In terms of stress and we are only up to 2004, she thinks it’s a lot.

I asked my neurologist about going out on disability.  I expected her to pooh pooh it.  NOT!  She said who deserved it more? I have worked for decades.  I don’t want to do this. I am going to have to think about this.

On the upside, my brain is fine.  She says that will be fine and she’s never seen it change. See, when I am sitting down I feel like me.  She tells me this is me.  I think NOT!!

I need to reflect and move forward.

May 2016 Check In

How did I feel this past Month?

On the blue side, with ups and downs.  The job thing is destroying me.  I get interest and interviews and then I crash.  April marked 6 months out of work.  It is now going to get even harder.  Yes, I am a mature woman with a gimp, a very stylish walking stick and not cheap.  On the upside, I connected with Meg’s blog http://www.bbhwithms.com/

Her blog is a must read and has given me so much hope.  It’s great to know there’s someone else out there.

I am reflecting on how I got onto the wrong track or the track I didn’t want to end up on in my life.  I walked away and now I can’t walk.  Something to ponder.  So, how much of my job situation is attributable to me.  Some, I think.  I became just a tad complacent.  I am looking back in order to move forward.  I feel time catching up with me.  It’s finite.

What did you do for yourself this month?

Still playing arts and crafts.  I did take a finger knitting class.  The only other attendee was a great grandmother who bent over and accidentally mooned the whole store.  I am reading more which gives me joy and peace.

I also have started playing with more smoothies and a reset detox.

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

Well, a definite emphasis on smoothies.  I expanded my repertoire.  I also did a Simple Green Smoothies Thrive  reset hoping to get me back on track.  I definitely deflated.  I couldn’t eat all the food as I was too full.  I paid no attention to the different autoimmune diets but it covered the bases – no sugar, no gluten, no caffeine, no dairy, no meat.  I could definitely eat this way.

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

No Zumba but more gym time.  And I have the new Fitbit Alta which is helping me with my steps.

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

I am so grateful for my friends who keep my head above water.  Every night I list gratitude for at least these five things:  friends, mobility, possibilities, wherewithal, creativity

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

Getting closer to that mission statement,  My grandma told me (it was Shakespeare but who knew?) To thine ownself be true.  Tis like the night, cannot be changed.  That works for me

Conventional medicine  Still just Ampyra and Baclufen.  And my doctor says there is a drug that will be available in the fall that will work for me.

Symptoms – Hands are still  getting weaker.  My hands and feet are multi-colored.  I have an appointment next week.  My neurologist looked at my hands and said Raynaud’s.

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?  It’s amping up with no work in sight.  Summer is coming.  Ouch.

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

Never give up! Never!  Defy convention.  My mother always said I conformed to non-conformity, so be it.

Christmas Pudding and the Ghosts of Past, Present and Future

I made Christmas pudding aka Black Cake aka fruitcake aka plum pudding this week.  It’s always been part of my life.  My grandmother made it.  My mother made it.  My aunts make it.    I have always loved it.    I am not a quiet personality.  One of my supervisors told me some years ago that had I been growing up now I would have been diagnosed as ADHD.  A facile explanation for sure.  But this is an old family story.  My Grandma had mailed pudding to my mother.  My mother was talking to my Bubba and noticed silence.  I was two.  Upon investigation she found I had gotten into the pudding.  Bubba told her well at least I would get drunk and pass out.  Uh, that’s not how I get drunk to this day.  I get hyper and very active.  Child is father of the man.

The pudding is one thing that I cannot give up.  It’s an integral part of my Christmas.

My mother made it all by herself when my brother was two and I was around five.  She declared that she wanted to jump out the 6th floor window and would never make it by herself again.  It’s an intense process and truly needs a family.

I was reflecting on how things have changed.  Some parts of the pudding are easier now.  When my mother was a child she remembered the servants tending it over a fire in the yard.  As this was in the tropics, it must have been quite the undertaking.

Traditionally, we made pudding the Saturday or Sunday just before Christmas in the last few decades.  Before that when I was little, it was done earlier as it had to be posted to Jamaica to arrive before Christmas.  That too, was a process. The correct tin and box had to be found, the brown paper wrapping and string, the customs form, the trip to the post.  Of course, if someone was coming or going a chance could be taken to smuggle it in luggage.  The opportunity did not frequently represent itself.  And of course, one received puddings too.  I now send pudding to my father-in-law who states it is the closest thing to Irish plum pudding. Of course, we are all colonials.    We send it after Christmas so he can enjoy it on his own, without sharing. I do share it with those who know it.

This year I made it the Tuesday before Christmas.  I am not working so not bound by the weekend.  I have only done it once or twice on Christmas Eve.  Once recently, due to work.  It made me feel unsettled. The  last Christmas my grandmother was alive, I made one by hand Christmas Eve at my aunt Hyacinth’s.  We had landed from New York that day.  Hyacinth hadn’t done it.  In fact, it really wasn’t a true pudding but more of a raisin cake/pudding.  It was made with raisins that had been soaked with I am supposing brandy.  Hyacinth was big on having a dram of brandy after dinner with a little cigarillo. It was flavored with rosewater.  I did by hand and mixed and cooked till literally around midnight.  I woke Christmas morning with blistered hands. I don’t think we even tried to smuggle our own in.  My mother was aghast that Customs made us unwrap all our presents.  By the way, it was agreed, my pudding, such as it was, was excellent.

Pudding is a huge process and starts months before.  Fruits need to be bought and in my family soaked in port, sometimes with a little rum.  We used to have a brown Mott’s apple juice bottle for the purpose which we kept in the garage.  My husband recycled it by accident a few years back.  My mother would set a box of raisins on a cookie sheet covered with cheesecloth and set it out on the backyard table in the sun to “plump”.  And then the bit I hated and have dispensed with, we had to cut the raisins.  This was done one by one and was a sticky mess.  This practice was dated to when raisins weren’t necessarily seedless.  Then prunes had to be stewed and pitted.  Another mess.  I buy them pitted most years and sometimes I stew, others not.  In the old days the pits were dried than cracked and the kernels also went into the bottle also.  I did that once by myself and had one of those jumping out the window moments. Then mixed citron.   We have had problems finding this in our regular market the last few years.  We were getting desperate.  Bought it this year for $10.00 and my mother and grandma would be twirling in their graves at that thought.

In the past, in the afternoon the day before, we would sit around the table and crack a pound of walnuts.  These go in last as my grandmother said any earlier made the pudding “mecky”.  I buy them shelled.  I am deeply grateful that I can afford to do so.

The night before we “rubbed” a pound of dark brown sugar and a pound of butter together. The purchase of the butter had to be  I did this by hand at Hyacinth’s.  We used to use a hand mixer.    The mixture has to be completely incorporated and change to a pale beige color.  How we didn’t burn the mixer out, I do not know.  My father, who never, ever tasted it would always fret that it would spoil.  They argued about it every year.  I have a Kitchen Aid.  It takes minutes and it’s done in minutes.

The morning of is very busy.  The tins must be taken out and set up.  When I was growing up, we used a pudding basin that must be easily over 100 years ago.  This was supplemented by three tins dating back to WWII.  These were made at that time not bought.  They had very sharp edges and as the years went by began to fall apart.  About ten years ago I mentioned the tins were shot and a West Indian woman told me that there was a kitchen supply place by the office where I could get them.  I did!  They were inexpensive and easy.  Another change.   The tins need to be greased and lined.  We used to do it with Crisco and the saved papers from the butter, and waxed paper.  I use cooking spray and parchment paper.  Cutting the wax paper was always an ordeal.  My grandmother made clothes without a pattern and cut freehand.  My mother cut perfect circles.  And then there was me.  I can’t cut a straight line with a paper cutter.  I lost that job.

Then pots of water must be put to simmer on the stove.  They have to be the right size to accommodate the puddings.  The kettle needs to be full and simmering too to be ready to replace water in the pots as needed.  One of the favored pots is my baby bottle sterilizer.

Next my Gran’s big bowl needs to be taken out.  When Grandma and Ma were doing it that was where the butter and sugar had been rubbed.  It’s a massive antique bowl.  I see smaller ones in antique shops and they are quite pricey.  We used to have a nested set but as this one is only used once or twice a year, it survives.

Assembling the rest of the ingredients:  It requires a dozen eggs.  They should be separated and the whites and yolks beaten.  My mother didn’t separate.  My Gran used to and whip the whites by hand.  In my teens, they compromised and separated but didn’t beat.  Ah, mixers.  I separate and whip the whites and beat the eggs.  This is when my husband starts to implode as he contemplates masses of dishes.  Next is the scale.  Again, a once a year item.  My mother got it with Plaid stamps.  Our recipe require 3/4 pound bread crumbs and 1/4 pound flour. This then gets sieved a cup at a time alternating with the fruits at the end.  First off, I stopped sieving the flour.  It’s a different time.  The flour is fine enough. Then we used to definitely sieve the bread crumbs.  This requires two people, one mixing, one sieving.  I used to sieve then I graduated to mixing.  Now, I do it on my own.  No sieving!

The butter and eggs get transferred to big bowl and now we start mixing by hand.  We add rosewater, vanilla and the secret ingredient – black currant jam.  This jam is so hard to find some years.  The spoon needs to stand by itself when the mixture is right.  This has been challenging in the best of times.  Now, I am weaker and older.  I need help.  My husband stepped up to the plate.  At this point, I feel incredibly sad.  My frailty bothers me.  I remember the last time I did it with my mother, too.  She had dementia but I didn’t realize.  I couldn’t imagine how she had forgotten how to do it.  That night was one of the last times my brother and I had cordial relations.  He stopped by the house, said I had to get out of the house and took me out. I got blissfully, blessedly drunk.  Jumping out of windows was not an option.

Next step the mixture gets divided into the tins and the tops get sprinkled with flour to seal them.  The tins are then shut and in the old days we made a flour paste to put around the edges.  It was my first job and I hated it.  Now I have proper tins that lock.  The next bit was my father’s and he bitched every year.  The old tins had to be tied with string without upsetting the contents so that the tins could be raised and lowered.  Much screaming and gnashing of teeth.  I have proper tins and my husband is amazing at knots so all that is needed is a loop at the top.

Onto the stove to steam for four hours.  The house begins to smell insanely of liquor and Christmas spice.  This drives my husband crazy as he is allergic to the nuts and can’t have any.  You have to keep watch over the pots to make sure there’s enough water.

It’s always a long day.  This year I was destroyed.  I literally hurt in all ways.  I hate not being strong enough.  I honor the past.  Some years it’s easier than others.  This year I miss my mother and my grandmother.  I know Grandma would not let me do it my way, the new overtaking the old.  They were precise women with a sense of what was the right way and wrong way to do things.

The puddings are served with a brandy hard sauce.  Not in my house, can’t take the chance on the alcohol and husband.  More adjustments.

At the end of the day, this is Christmas – family, memories, tradition.

Merry Christmas!

Politics, Friendship, and Mortality

I just found out a few hours ago that one of my childhood friends passed away in his sleep last night.  Losing anyone so young is hard.  Well young is relative but I still feel relatively young and as my former sister-in-law said earlier this year “anyone dying before 80 is young.”

So, my mother worked with his father and we grew up on the same street.  His dad drank heavily and so did he but that’s what we did then.  He transferred in high school to an exclusive Catholic high.  I went to college with 6 boys from that school.  They told me that his drinking so disgusted them that they themselves threw him off the bus.  We used to drink at the same bar in our late teens and early twenties.

A memory – the New Year’s Eve  I was 21, I ended up at a party at his house with my two best friends.  The other Tress(same name) and I had dates.  Let’s put it this way, she was going out with Donnie and when I was around we used to double with his best friend who was called Hoppy, seriously.  He was far from hoppy but around 6 foot something and a solid 200 pounds plus.  He was a time filler for me.  Our other friend was just along for the ride.  Our original plan was to have a sleepover at my parents and then the guys came up with this party plan.  Somehow towards the end of the evening we ended up at J’s house.  His parents were there and some others too.  Not mine; not only did they no longer go out on New Years anymore but my mother didn’t like his father – read heavy drinker.  And it must have been very heavy as the first time I was drunk in public  was at her boss’s home(same company)  when I was around 16.  Different era, different mores.  Anyway,  Hoppy takes me over to his parents “Ma, Dad, this is the girl I have been telling you about.”  Big shock to me.  I don’t, didn’t do relationships, especially at that age.  So I am doing the drunken nice girl chat with parents and when I get away, M,  my other friend is in Hoppy’s lap, cooing to him “I want it and want it now.”  Different era, stumbled out of the house and walked the two long blocks home including one block that was a ballfield.  And it was a four lane road opposite parkway woods and a parkway.  A drunk 20-something couldn’t do that now.  Went into the house and my parents called out and asked where everyone else was.  The other Tress is with Donnie at J’s house and M?  M is f*cking her brains out with Hoppy”  Now you have to understand that was a big evil word then and I am known for not using “bad” words.  Upshot?  Parents yell at me for the profanity and M  comes in much later.  The other Tress never spoke to her again.  I am more forgiving but have to admit that I saw her in the subway 20 years ago or so and she was completely grey! Revenge is a dish best served cold.

At that point in time,  J was getting his life back together.  We used to hang in the same bar and have drinks. He was working at the local grocery store stocking frozen food.  He was going back to school.  He was very, very smart.  We had always been in the advanced class.  Then he said he made a girl pregnant that he didn’t even really like (it may have been the alcohol talking) and that was it.

Fast forward years and the advent of FB.  He was mad crazy about his grandson and was a successful guy.  Our high school always has a picnic and three years ago, I went.  Topic for another day.  There’s a candid shot of the two of us jabbering away.

 

But and there is always a but, he was far right and I am far left.  I grew up in Levittown and far right is the way most people lean but back in the day things didn’t seem as absolute.  I always knew that my views were not held by most.  J and I had a teacher in 7th grade who on reflection probably was in the John Birch society.  I vaguely reflect an argument over my not saying the Pledge of Allegiance with J.  Still, see above, we drank together.  However, I just couldn’t take it on FB.  As we and society have aged, we have become more polarized.  I hate hate speech.  Uh, yeah Levittown – 99.6 or 99.7 white when I was growing up.  I was at a high school dinner in Levittown a few summers ago and they were talking about how Nixon was right with Watergate not ‘Nam but Watergate.  Put Obama into the picture and just imagine.  I have only unfriended one person on FB and it was another elementary school onwards person with racist hate.  So, I hid J.  I only saw innocuous likes.

I knew he had moved back onto the Island from a neighboring state.  Today,  I see that he was right here in my town.  He was truly a part of my growing up.  Because I hid him, I didn’t know.  We could have and should have been able to move beyond politics to that common childhood.

When did we as a society become so divisive?  I recently read that people are deciding where to move based on the overall political makeup of an area.  What happened to us?  Where is the veneer of tolerance?  Fake it till ya make it works sometimes.  We are cutting off discourse and therefore growth.  I am guilty.  I am thinking of what I missed the last few years by cutting J off.  It makes this loss huger.

We don’t know what Fate holds for us, why waste time.

I mourn for J and for missteps.

Carpe Diem.  RIP J and I’ll be lifting a glass to Auld Lang Syne.

My Birthday

Well,  I hit my milestone today.   I have been so wrapped up in this for the past year.  Finally, this week I decided it wasn’t all of that.

So,  I took time off from work and drove up to Finger Lakes to spend some time with one of my besties and husband.  Sunday night we sat outside on the deck and watched the blood moon.  A magical beginning.

Today we drove and saw art and did a little shopping.  And then great wine with friend.

I feel so blessed.  I may have problems walking but I am surrounded by love and new possibilities.  Both my stepsons and their girlfriends called me.  I had best wishes on Facebook.  Messages from friends when I woke.  Awesome card from husband.

I have hope despite all.

Age is a number and a troubling number at that.  I have never done well with numbers.  Can’t say I am looking forward but not looking back either.

I will make this last part of my life count!

I am so blessed

After Mammo

No suspense, it’s all fine!  I am relieved but have a lot to say.  I went Friday and they took two more views and an ultrasound.  By the time I reached the scan, I was resigned to it going badly as every time they pressed the wand or whatever, it hurt.  Of course it did, ninny.  Your breast had just been smashed and squashed.  Talk about dense!

So more on the mammo. It seemed every other woman was there for a second look.  It hit me that they used to do the two views originally.  Then you used to sit around and wait for the results.  I don’t know which way is worst.  I was thinking again this week, it’s all about the money.  Where I go you take everything on top off, put your things in a plastic bag and sit in a top that is almost impossible to close.  So, would it take that much more time to take your things off in the room?  It is so sad, all these tense women sitting around holding plastic bags like refuges from a lost store.

Ok, there’s more.

12 years ago,  I had a similar scare.  It was worse and my high school boyfriend drove me to the biopsy December 23rd.  I was flashing unhappy memories.

Friday,  I had a friend to lunch.  My thinking was whether the results were good or bad, it would be good to be with a friend.  My husband was going over his sister’s to supervise a construction project.  So, we are sitting around having a nice time.  I have a lovely bottle of wine on the table.  We are also drinking steeped tea.  A very girly lunch, pink china, crystal. Friend says who is coming over.  I live on an odd block with only two other houses.  It’s out of the way.  We never get trick or treaters.   It’s husband’s probation officer!  I tell them where he is, ask if they want to come in which in retrospect may not be the best idea with wine on the table.  We are not supposed to have alcohol in the house.  They don’t come in but I am now flashing back big time.

So, 12 years ago and I believe this is one of the seeds that let whatever is in my body out and running amok;  I received a call at work that my Dad wanted to go to the hospital.  This was 9:30 a.m. I left work immediately.  My father was dead before 11 a.m. I found out my mother was in 6 figure debt and had no handle whatsoever on reality.  I gave the eulogy.

A week later, my now husband was arrested at my mother’s house for non payment of child support.  This was bogus as his ex-wife knew there was a violation of probation outstanding.  She is not a bright bulb and the police had been coming to her house looking for him and terrifying her 13 year old.  He was jailed.  This started a new chapter in my life.  I am suburban, middle class.  This was f’ing terrifying. Visiting jail and going to court were experiences I never expected to have.  On my first visit, a woman said well, if her husband wasn’t available, she’d visit her Dad.  This was a completely different world for me and one I have been living in since.  And I fell as I am wont to do when upset.  At work, my manager who worked out of the UK wanted to write me out of work for the rest of the year.  She could have if I was in the UK. Our HR person who I always refer to as Topo Gigo because she bears an astonishing resemblance to the little mouse told me I could do it unpaid.  I was responsible for three households! Compromise:  I had to go for counseling.  The counselor figured out that when I was upset, I let my feet out literally from under me.  According to my neurologist,  I must have had the condition since then or earlier.  Two weeks later, I had the bad mammo with the lump.  I kept on insisting it was the fall.  They said not.  Guess what? After all the tests and worry, it was the fall.  All this pain and fear  came rushing back on Friday.  But on the positive side, I had and have some amazing friends who have stuck by me steadfastly through all of this.   I did survive and have continued to survive.  I hated flashing back.  But once again, I made it through with the help of a friend.  Life is full of possibilities.

Bell Bottom Blues

I started thinking about Bell bottom blues after I referred to it in a blog about the death of an ex.  Song was on my brain so I got the Ipod out at work today and blasted it.  Howled in my mind.

I always referenced it for breakups.

I never wanted to fade away and apparently I didn’t. We have run out of days.  And I never ever wanted to crawl across the floor to anyone or beg. “I don’t want to lose this feeling”  I listened to the words today with a whole different slant.  I always thought of it from my perspective.  I never thought about it from the ones I left, it was always about me.

And in your heart I want to stay, I guess I did. It’s odd to think of someone loving me like that after all this time.  They always stayed in my heart.  I may not have loved them but I went out with a guy who said once you had slept with someone more than once they were part of your life, like it or not.  By the way, aside from my first husband, he’s the only one who doesn’t speak to me.

“You won’t find a better loser”  I have done that well.

My favorite part was always “don’t be surprised if you find me with another lover” .  It’s what I always wanted. I felt it was the ultimate f.u. and the horse you came in on. And Joebe found me with a few lovers after. Isn’t it the fantasy?  I survived,  I am over you and look how well I did.  I swapped you out.  It’s part of being a better loser.

But Joebe and I have run out of days.  And I ran out of them with Bobby and Richard too.  I wanted them to see me, see that I had made it to the other side as it were.  I guess they did, too.  Richard, I saw again.  Ran into him and disappeared for a few days together and realized what’s done is done.  He tried to call me before he died.  I didn’t take the call and chastised a friend who knew us both for giving up my number.  When I found out he had died, of cancer, before he was 40, I was glad that I had not taken the call.  “No regrets, coyote.”  What would we have said?  Who was sorry?  The outcome would always have been the same, the relationship was dead.  But wouldn’t it have been great to run across him with another lover and me with another one and feel all’s right with the world.

Bobby, I never saw again.  I used to look for him in the New York streets.  He died of AIDS before we were thirty.  He was the one when I have been to therapy and they say well who was the one that you coulda wouda married?  Well, aside from the fact that he was gay, we had the best time.  It was that young in New York kind of thing, hipsters before there were hipsters.  Doing all the cool stuff and wearing all the cool stuff.  He left me for a guy.  I didn’t know it  at the time.  His family blamed his death on me.  I couldn’t, didn’t keep him from himself.

I have always wanted to get to the end of the chapter, see the summer rerun and find out what really happened.  I realized when I was 18, life wasn’t really like that.  Still I keep on hoping and every once in awhile you get one of those moments of clarity.  I am approaching one now.  Maybe there’s a reason why we are not supposed to.  This is hard.  This is not satisfying and full of sunshine.

You did make me cry.  There are no more days.  It’s time to say goodbye.  And it really is, and the irony is on me.