The Rheumatologist

Since this journey started almost 8 years ago, I have been looking for a good rheumatologist.  Actually, I did have one.  She was originally my mother’s.   It upset me that I had started down this path.  This was in the early days when I was still looking for a diagnosis.  She tested me for everything.  I tested positive for everything.  Well, Sjogren’s, Lupus, rheumatoid arthritis for starters.  I cried.  She hugged.  She told me I was asymptomatic.  Also, it wasn’t unusual.  She said that one disease could open the door for others.  Not to worry, I wasn’t considered progressive.  Three visits in, she retired  and moved to North Carolina.

Move forward almost a year.  I really thought I  needed a rheumatologist.  I am known for my smile.  Inside my lips started to hurt.  I could no longer smile.  Lipstick hurt.  I am also a makeup kinda woman.  My neurologist told me not to take hot baths, my favorite form of relaxation.  My ability to walk was fading.  I felt everything I loved was disappearing and being diminished for me.  At this time my mother also seemed to be deteriorating.

I went to the “replacement” rheumatologist.  First, he looked like he was 12.  Being a Hopkins (non-premed) graduate, I understand the importance of newly minted doctors.  I also understand that after a certain age everyone looks 12. But… he walked in with a laptop and I kid you not, surfed the Net  with my symptoms.  He gave me 5 possibilities – lupus, menopause, herpes, stress and something I forget.   Left in a hurry.  The symptoms had been easing anyhow.  A couple of days later I found  out my mother was dying – flare-up!  It was stress.

Next,  I contacted a roomie from college.  I said I went to Hopkins.  I went to school with a sh*load of doctors.  I see her every five years or so at homecoming.  She became head of rheumatology at a teaching hospital in NC.  I call her office and leave a message that I’d just like a referral, just a referral.  Still waiting…

Even my neurologist has said for the last few years I need a rheumatologist.  I have a friend who is also host to myriad autoimmune eruptions, disruptions and events.  In December, she looked at my right hand which unbeknownst to me was purple and beyond cold.  She warmed it up and announced you have Raynaud’s.

I am taking my usual happy hot bath one night in winter.  My extremities are always cold and always have been.  I wear socks to bed most of the year.  Over the past few years my feet have been getting worse but they warm right up in the bath.  So, I get into the bath and notice my hands are freezing and they are not white, red or purple but sort of dead looking, an  awful non-color.  I plunge them in the bath and swirl around and nothing.  They do not change! It must have been 5 minutes or more before color came back and they stopped hurting.

Fingers started changing color more frequently, especially my middle left hand finger.  Then at the end of March I stood up at the table with Tom right next to me and did a bizarre collapse and fall.  I really hurt my left pinky.  Tom made me a splint with a meat skewer.IMG_0919  I went in for research study and MRIs.  The doctors were much taken with his work.  My middle and ring finger started to go dead several times a day!  By the time I went to my neurologist, Tom had perfected the splint with a smartphone stylus replacing the skewer.  She says next time I fall like that I need to go to urgent care and uh, you have Raynaud’s.

This brings us to today.  I asked my autoimmune friend for her rheumatologist who also practices alternate medicine.  He is not covered under my health insurance.  No surprise on that one.  But I believe there are certain things you don’t skimp on.  Last year, my neurologist wasn’t covered under my insurance.  This year, she is free!  This guy is several hundred dollars.  He sends me a thorough and complex questionnaire on line.  I literally  complete 28 pages of questions!  I appreciate this as my handwriting has always been awful and lately my hands don’t work well all the time.  We get there today and I have to fill out another sheaf of papers.  They explain their systems don’t always cooperate.  No waiting and the nurse walks me back.  She weighs me and says “You’re tiny!”   High point of the visit.  The last time anyone said that was my other college roommate after not seeing me for 30 years.

I have on the spectral leg and my cane aka walking stick.  Doctor walks in with laptop.  Tom flashes back but then sees he is using it to pull up records and take notes.  He asks questions and asks about blood work.  I don’t have any recent.  I  say I am here because my neurologist and friend say I have Raynaud’s.  He squeezes my hand and says my self-diagnosis is correct.  He doesn’t look at my feet. Nothing.  I need blood work to see if anything else may be going on.  I tell him that one of the reasons I chose him was that I understood he also practiced alternate medicine.  He does and goes into an explanation of auricular medicine.  Tom practically starts to levitate.  We grew up differently.  I have to be near death to take an Advil.  He is one of 5 children and any drug is a good drug.  Herbs are not doing it for him. Doctor says ‘Oh, you don’t like going to doctors?”  That is not my issue.  I go to the neurologist, gynecologist and eye doctor regularly.  I explain about Hopkins and how I saw them in their formative years so, I can be wary.   I get the scrip for the bloods, say goodbye and then doctor asks why I am using a cane?  Cripes, I had to be helped onto the scale. We had discussed the MS diagnosis earlier in my 10 -15 minute visit.

Back to the drawing board,  I need a rheumatologist.

 

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.

April 2016 Check In

How did I feel this past Month?

March definitely was a combination of the lion and the lamb.  I am actively looking for work.  I fear that my age and infirmity are preventing me from getting a job.  Yes, I try not to focus on it but it is the elephant in the room.  Sometimes, I say that too.  Then, my Jawbone hasn’t been working so even though I am not walking enough I can’t tell.  I am deteriorating.  No one likes to hear it or see it.  I fell three times.  The last was a week ago and I really hurt my left hand.

What did you do for yourself this month?

Still with the gym and less so Zumba due to the weather.  I can’t really go out in rain or snow, too much chance of falling.  I have started to write again.  I started journaling in January and am writing in the day.  I have continued to clear clutter.  I am trying to reach out to people.  I am reconnecting with the creative  bits of me, a little writing, a little art.  Decoupage again.  Something I started to do in 7th grade.  I was always good at it.  And I am starting to take some glasses.  It’s both an outlet and a way to meet people.

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

More smoothies.  A little off the rails with gluten due to holiday.  And a little more meat.  Getting back on track.

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

More time in the gym.  I am really liking it!

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

Faith helps lots.  My friends are awesome.  Some came into my life, some left.  The ones that are here are my rocks.  My stepsons continue to amaze me with their love and support.

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

A higher purpose is kinda grandiose.  I stand by fighting for what’s right.  Hopefully, others can benefit.  Living with integrity and never ever giving up.

Conventional medicine  Still just Ampyra and Baclufen

Symptoms – Hands are getting weaker and my balance is off.  My fingers are going white and numb which is freaking scary.  My right hand turns purple sometimes.

What symptoms are most troublesome  – Independence and mobility.  I also have been falling more.  Part of it I know is  stress.  But the rest of the time, it’s balance. And the fingers!

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

How is stress level?  Well, I am  still not working. So it’s getting to me.  I am able  to sleep later though.  I’d like to wake between 6 & 7 in the morning.

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

Faith, food, exercise.  Creative work. Never give up!!

March 2016 Check In

How did I feel this past Month?

A very mixed month with peaks and valleys.  Getting a job and maintaining funding has been consuming.  Some days are great, others less so.  I am fighting the blues. It’s winter so that’s not abnormal. The season distresses me.  My condition makes me housebound more than I’d like.  Also, not having income makes us stay at home – no joy-shopping.  I am in a waiting mode.  It’s never easy for me.  Sometimes, I am a slave to that e-mail, waiting for news, for any movement.

What did you do for yourself this month?

Still with the gym and less so Zumba due to the weather.  I can’t really go out in rain or snow, too much chance of falling.  I have started to write again.  I started journaling in January and am writing in the day.  I have continued to clear clutter.  I am trying to reach out to people/

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

Back mostly to smoothies.  They really help my system and mitigate my sugar cravings.  I created an alert on my phone to remind me to have fruit in the afternoon and my Bac pill.

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

It’s exciting.  I am feeling achy at the gym.  I am taking it as a sign my nerves are reconnecting.  On the flip side, I seem a little less flexible and continue to experience balance problems.

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

My friends. The gift of faith.  I have been playing with “The Power of Positive Thinking” and it has reconnected me to faith.  The love that is in my life.  My stepson brought me the most beautiful rose on Valentine’s, unexpected and lovely.

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

No surprises.  No mission statement.  Purpose?  Let others benefit by my fight. Integrity.  Principles do count.

Conventional medicine  Just the Ampyra and Baclufan.  Really beginning to get that the right food and rest will do a lot.

Symptoms –  Hands are becoming a problem.  Fighting it of course!  Balance and flexibility which can be addressed with increased determination

What symptoms are most troublesome  – The lack of freedom.  As I write this, the newspaper is in the driveway and I just can’t go out and get it.  My increasing reliance on the cane is hindering me in my job search.

Do I blame myself for things – Of course, between stress, wrong food and not enough exercise

How is stress level?

Still high and who wouldn’t be between money, job and health.  This is becoming my new normal.

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

Remember to breathe. Have faith.  Eat and exercise properly.

Resiliency

I have been without work for 4 months today.

On the positive side, I have been able to have some much needed rest.  I haven’t had to wake up at 4 a.m. ish since then.   My body clock has adjusted or righted itself to a 6:30 a.m. – 7 a.m. rise.  I go to bed around 10.  Finally, after years like a normal person.    I go to the gym.  I eat healthy food – read I have not gained weight at home.

On the negative side, I walk less.  I try but most days can’t get in near the amount of walking I did when I worked.  I would have thought I would have been improving significantly.  I am stressed but in a different way.  I need and want to work.

My walking has impacted my job search.  I know the first interview I went on was ageism and the “disability”.  They couldn’t get me out of there fast enough.  Other ones have been more subtle.  I had two companies that I went through several phone interviews.  I had to get on a shuttle bus for one.  When I was well I couldn’t get in those.  Ask anyone who ever had to take an airport shuttle with me.  The second one was the same day as the shuttle one.  I wobbled.  I need to use the cane.  It is stylish.  I try to wear non cloddy oxfords.  I wear loose pants over the spectral leg.  I disclaim that when I worked I took two subways everyday!  I work into the conversation how many steps I walk in a day – over 8,000.  This is seriously more than most “well” people do.

I have explored some opportunities on Long Island where I live.  The company recruiters have been upfront with me.  I am not cheap.  However, I have lots of experience and am excellent at what I do.  I had several conversations with a major national company out here that would have met my salary requirements.  I didn’t have to walk as my experience in and of itself was kind of threatening.  I was OK .  I made it through phone interviews to an in person assessment.  One person saw me with the cane.  And I walked well!  We had a really great conversation.  I had the experience and the approach they wanted.  This company told me when they made the initial call that they raised the salary because they knew with my experience, it was expected.  I received the standard thanks but no thanks e-mail today. I am finding it really hard to take.  My husband says it wasn’t my walking  but the expense.  I don’t know.  I usually believe everything happens for a reason.  Numerous times in the past I have not been offered jobs that I wanted and maybe should have had and it all worked out.  Sometimes, I didn’t see it at the time but later I did, including two jobs at the World Trade Center where in all  likelihood and seriousness, I would have died.

Finding work has always been hard for me.  This time has been easier for me in a certain way.  I almost always have something in the pipeline.  Years ago,  I was almost always one of two and almost always came in 2nd.  I don’t know where I am now.  Last time I had a termination like this it took me almost ten years to get back to where I was.   I don’t have the time, money or energy for that.

Normally,  I take these setbacks in stride. I was relatively calm four months ago.  Today I wept.  I almost never cry about anything.  My husband  was lost.  I am the strong one.  I don’t get blue.  I snap back.  It’s freaking hard.

It looks like I need to head back into NY.  Like Willie Sutton said, “that’s where the money is.”  I was liking sleeping like a normal person.

I am trying to find that resilience.  I know I am a resilient personality.  It’s hard.  It takes energy.  It takes faith..  If I don’t use the cane, I’ll lurch more.  I don’t know how else to address this.  My mind is fine. I feel “normal”  until I stand up.  I forget my physical limitations.  For the past month or so, in my dreams I find myself walking.  I wake and am crushed.

Digging down to get out.

Badlands

I have discovered Amazon Prime Music and I am in love and enthralled.  The music of my life at my fingertips, for free.  Well, for the annual membership which I use for tons of other things so this is just bonus.

I think I may be like many people in my age range.  I have albums of my music or as my little nieces say “What big CDs you have:.  I have downloaded some of it on my ipod.  But….  There are all those albums and memories.  I am in Amazon download frenzy.

This weekend  I found Badlands.  Serendipity.  I get through my life with music.  When I lose the music I know I am in bad shape.  After a long bad time years ago, I knew I was going to be alright when I heard Springsteen on the radio and felt joy again.

But Badlands is more .  Years ago I lost the job that I loved.  Why do we say lost?  I didn’t lose it, they let me go.  Eight and a half years of mostly love.  I believe the roots of my present condition hark back to that time.  I used to work insane hours happily.  I didn’t understand why people couldn’t wait till Friday or were upset at Mondays.  I travelled  all over the world for that company.  However, there was one trip.  I was really sick before I left.  I was going to spend two weeks in Japan and Taiwan and fly back to California to work a trade show.  Then I would stay a few days in Los Angeles with my boyfriend’s best friend.  Men who did that trip used to spend some days in Hawaii and their wives would fly out to meet them.  I was unmarried and wanted to go to the beach in Thailand (bucket list though the term wasn’t used then) .  Instead, I had to fly back to California to work.  One of the guys gave me advice on how to fly so sick.  “Blow Afrin constantly up your nose before landing.”  Well it worked.  I made it through landing.  Who knew half an hour later that the pain would be excruciating .  I was really sick.  I was the company’s “little girl”.  The men I had to meet for business were terrified that George (the president) would be furious if anything happened to me.  I was constantly plied with soup. I slurped my way through Japan and Taiwan.    There is a reason for everything .  I was in the same hotel in Tokyo as Mike Tyson.  His posse insisted that I “party with Mike.”  I couldn’t even croak.  Just nodded “no” numerous times and kept on going.  My brush with “destiny”. When stories came out about those girls later,  I totally believed.   I left Taiwan at 11 a.m. in the morning, landed in Los Angeles at 11 a.m. the same morning (international date line) and worked till 11 p.m. that night.  I was so sick I couldn’t think of staying in LA after the show.  Back in NY, I collapsed  in JC Penney’s.  I was diagnosed with pharyngitis.  I truly believe that disregard for my health is a source of my ultimate conditions.  And ironically enough on my return I found as scared as everyone was of telling George being furious if anything  happened to me they were also terrified of telling him that I was too sick to undertake that trip.  So, after all that dedication, passion and bad health, I was cut loose in the world.  I was gutted.  I lost my livelihood and most of my friends.  Well, I guess they weren’t my friends.  Actually,  I do still have some from those days and some have died.  In fact,  I had a card this week from one of them.  But with no money and no job ,  a disastrous marriage, I felt cut off from everyone including myself.  I would wake in the morning feeling as if there was a huge pillow in my face.  I left my then husband ( I love that phrase “my then husband”) and moved back with my parents.  They couldn’t acknowledge depression.  My mother was a pull yourself together type. She said to me at the time I had to learn how to do it myself because she wasn’t always going to be around to do so.

I was back in my childhood bedroom.  Me and my record player.  I started to play Darkness on the Edge of Town and Nebraska obsessively.  Badlands helped me through.  “Talk about a dream, try to make it real.  Spend your life waiting for a moment that just doesn’t come.    I believe  in the faith that can save me .  Raise me above these badlands. For the one who had the notion, notion deep inside, that it ain’t  no sin to be glad you are  alive. I’m gonna find one face that ain’t looking through me.  I want to spit in the face of these badlands.”  And that’s what I did.  I made it through the badlands.

 

And here I am again years later.  Another job “lost”.  Financially crunchy.  Up against those Badlands again.  It all came rushing back again.  This time I do not have my mother to put me back again.  I am starting to crash.  One thing I know I can’t and won’t go back to that freefall again.  Well, I still feel the joy of the music again.  And I still retain my resiliency.  Resiliency feels like a curse sometimes.  I used to tell my mother I felt like a Joe Palooka punching bag.  Every time you hit me I spring back.  My spring is getting kind of rusty.  This time there’s the extra wrinkles:  no parents, my condition, uh, actual wrinkles, a mortgage.  We wonder when I go for a job with my outfit coordinated cane/walking stick what the impact is on the hiring decision.  I had an interview where I had to get in and out of a van.  I would have and have had the same difficulties in the past with heels.  I am not the most graceful or coordinated person as numerous airport shuttle drivers can attest.

I see my resources dwindling as I hold onto faith.  And yeah, I’m blasting Badlands again

February 2016 Check In

How did I feel this past Month?

Like I always do.  I fell apart after the main event.  Can I say Babka?  But I have been working out and mostly take care of me.

What did you do for yourself this month?

Gym, Zumba.  Gratitude journal.  Applied for jobs like crazy.  Writing a bit more.

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

Struggling to get back on track.  Still trying to mitigate as the holiday stuff leaves the house.  I started again having a green smoothie practically every day.

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

Definitely more gym this month and started Zumba.  Zumba gives me joy and frustrates me at the same time.  I can do so much less than I used to.

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

Well things are moving along.  I had companies want to talk to me about jobs.  I was able to pay my bills.  I have amazing friends

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

I guess at the end of the day I want my life to have mattered and changed someone else’s positively

Conventional medicine  Just the Ampyra and Baclufan.  Really beginning to get that the right food and rest will do a lot.

Symptoms – Balance is definitely off and my hands are getting weaker but I am fighting.

What symptoms are most troublesome  – The balance and being confined when there’s snow.  Three years ago I could dig myself out in the driveway.  Now I can’t walk outside.

Do I blame myself for things – Sure.  Still not aggressive and focused enough.  I let this into my life.

How is stress level?

Through the roof.  No job.  Confined to the house.

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

Change the food more and keep on plugging away.

January 2016 Check In and Prior Year

Start of a New Year so it’s time to not only look back at the previous month but also state of being (so much more than health) for the last year.

How did I feel this past Year?

It was definitely a mixed year.  I had some highs and lows.  Getting the Ampyra and being able to walk more was great.  I also was able to get nice “things”.  It was an acknowledgement that I was good enough.  I made my milestone.  I spent it with one of my best friends.  I lost 20 pounds because I ate right, not diet.

I lost my job and that’s what I did, it’s lost. So, maybe that’s a low.  We’ll see

How did I feel this past Month?

It’s the holidays – a bit frazzled.  I am surprised despite being home I didn’t get a lot done for the holidays. It’s like losing in a way.  Overall, a bit calmer.  Still trying to sort out.

What did you do for yourself this year?

Well, I did more exercise and was more mindful of my health.  The biggest thing is that I stood up on the job issue and have not taken it lying down.  I also validated myself  by believing I was good enough.

What did you do for yourself this month?

Well, the Elves Workshop was a blast.  I have more fun than they do.    Spent time with the kids which was great.  Applied for jobs like crazy.  Still trying to reconnect with me.  Restarted my gratitude journal and my journal.  The gym.

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

The beginning of the year was better than the end.  I slowly drifted off plan.  It clearly reflects in my health.

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

Uh,  holidays?  Totally lost it.  Last year I didn’t touch the cookies.  This year I ate them all!  Still tried to mitigate when possible.

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

I am going to answer for both the month and the year.  I increased it this year.  Partly due to the Ampyra, and part due to what I wanted and needed.  After the job ended, I started the gym more.   However, it’s not like in times past.  I realize it’s because I can’t take classes so miss the social bits.

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

Again, I feel blessed, especially at this time of year.  I can still walk.  I have friends I love and who love me.  Life is still full of possibilities.  I still feel joy.  Friends, health and love are what matter.

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

Still working on that mission statement.  I am thinking about joy.  Someone commented recently that I have always been smiling since I was a child.  And she should know.  So sharing that joy.    And whilst I don’t want to be a poster child, I am partly out about the MS.  Okay, I still don’t accept it.  However, if coming out prevents people being treated the way I have been jobwise, then so be it.  I guess at the end of the day I want my life to have mattered and changed someone else’s positively

Conventional medicine  Just the Ampyra and Baclufan.  Waiting for coverage for the biotin

Symptoms – Well the stress hasn’t helped.  I am a bit weaker.  My balance is the pits.  My hands are going but I am fighting.

What symptoms are most troublesome  – Walking as always. A bit wobbly too.

Do I blame myself for things – Same as always. Of course! Yes, I am still blaming myself for not being aggressive against this. However, getting back to me, slowly, slowly but surely!

How is stress level?

Moderate.  There are days it peaks for sure.  When I take money out of savings to live and when I have to charge things.  But not commuting is so huge.  This still applies.  Feeling not working but am optimistic.  Stress is down a bit and manageable.

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

So aside from my Christmas pudding, a serious return to the right eating, sticking with the gym, gratitude and attitude.

Make 2016 count!

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.