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.

Valentines – Get Out of the Kitchen

Well, things have been a bit tough lately with my not working in months.  We have been very frugal and watching every cent.  Last week I went on an encouraging interview.  It was one of those 2 on one deals as well. So, maybe a tad anxiety inducing.  As a treat ( I have a friend who always expresses amusement that I know how to soothe myself) we stopped in at the new Stew Leonard’s on the way home. It’s  a dairy, specialty supermarket.  The first one on Long Island opened not far from us and on the way home.  Feeling optimistic, we splurged on some ribeye steaks and baked clams.

Since Valentine’s was the coldest on record  if not a century, outdoor grilling was a non-starter.  I looked on Epicurious and found a stovetop recipe – 2 minutes on high heat on each side then a wine and garlic sauce.  I have been on the weak side the last few days and have been unable to hold things and off balance. Not sure if it’s stress or weather.  Refuse to believe in deterioration.   T also fancies himself quite the chef.  He said he would do the meat and I could do the sauce. Recipe said 1 tablespoon of oil heated till it shimmered.  “ how do I tell if this is shimmering?”  Mr. Excess had put in what looked like a quarter cup of oil and sprayed the skillet as well.  I said saute, not deep fry.  He dumped some out.  First side seared nicely.  Second side started to smoke and set off our fire alarm.  Cats dived for cover.  We disconnected alarm.  Second steak, first side ,house is getting really smoky.  It is 12 F outside.  T opens kitchen window and front door. T is asthmatic and starts to gasp.  Goes into bedroom and shuts door to try and block smoke.  He comes back out with shirt over his mouth and nose to remove steak.  I start sauce.  Now, part of my condition which has also been getting worse is I get really cold and my hand turns purple and my feet get so cold they burn.  We had worked really hard Valentines making sure I stayed at the right temperature.  At one point I even had on fingerless gloves.  So, needless to say as I am doing sauce I start to shiver and shake.  I make him close the window and door.  Steak was  excellent; atmosphere was smoky but not smokin’ hot.

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

November Warrior Check In

How do I feel today

Mixed.  I have been getting good rest.  Down side – I am out of work.  So,  I am not getting paid and there is confrontation in my future.  I am angry which is something that doesn’t agree with me.  However, it is an improvement of the stress that I have been undergoing since August.  I just want definitive closure which I don’t see for the definitive future.  It’s Sunday and I read the Times again!  I am slowly, slowly decompressing and getting back to me.

What did you do for yourself today?

I did my stepper and tried to recalibrate my tracker.  I am reading.  I will probably cook something healthy.  I will play with my tea business.  I calculated everything I have earned for the year so I can sort out my health insurance.

What did I eat today and how did it make me feel – Still thinking about food and making good choices.  I did do chocolate but I am doing so much less of it.  I am looking forward to cooking something from Two Moms  in the raw.

Did I exercise?  What did I do?  How did it feel – Well,  I did the stepper and will do so again.  I have been to the gym twice this week.  Being out of work, I will start going practically everyday as I know from previous experience, it’s the only way I will stay sane and healthy.  It feels good.

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

Ah, I am blessed.  Someone I knew a long time ago said I was one of the few people at school that was authentic and cool and still am.  Kinda validates what I am about.  Grateful that I have the wherewith financial and emotional to weather this storm.

I have an opportunity to focus on getting healthy.

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

Driving force?  Well, I am standing on and committed to principle.  Hope it matters.

How long have I been treated with conventional medicine   I am going to start Biotin this week.Ampyra since April.  Baclufen.  I am seeing more and more about food.  I am thinking about mostly committing through the end of the year.  I should be at home and can couple it with exercise

The first time I had a symptom – June 2004 walking on the beach boardwalk.  This week I walked 11 blocks slowly during rush hour with a cane.  YeaH!

What symptoms are most troublesome  -still hung up on the ugly shoes!  And my hands seem to be weakening.  However, see stress rearing it’s ugly head.

Do I blame myself for things –  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?

Coming down a bit.  Last month, I was returning to uncertainty.  This month is uncertain in a different way.  I feel calmer all in all.  Not getting up around 4 a.m.  Is HUGE!

What can I do tomorrow to make it better than today?   Exercise, structure and move forward

Until next month.

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.

February Warrior Check In

Back for February:

How do I feel today – Still in the winter blues.  I have been doing a lot of work.  It’s  a mixed feeling.  I enjoy what I do but I am working flat out.  This is my 13th straight day.  I don’t think I am getting the validation  I want.  Is that important enough?  And I watched the last episode of Parenthood and wailed.  All the possibilities that life could have.  Could have, would have, should have.  There’s just the now.  And it is finite.  That milestone looms and is dragging me down.

What did you do for yourself today?   Not much.  I worked which in a twisted way is for me.  I need to get away from that because seriously, in the past giving my all to someone else has never worked for me.

What did I eat today and how did it make me feel – Well it was mixed and I really didn’t do well.  I started off with an apple streusel (non gluten muffin)  I had some nuts.  I made a pina colada smoothie.  It tasted like a pina colada and I can’t stand pina coladas!  But for dinner I had steak with my husband.  I don’t like steak particularly and it’s so not on Swank.  I made some great mango sorbet.

Did I exercise? What did I do? How did it feel – Well, this hasn’t been a banner week or month.  I have literally been housebound and working 10 hours a day.  Today I did the stepper for 45 minutes.  Not enough.  I have been spotty on the abs and I have not been to the gym or Zumba.

For whom or what are you grateful? What matters most in life? Grateful as usual to be warm safe and dry.  I have a job.  I have possibilities.  I have people who love and care for me.  Same as last month.  This month I am thinking of my husband and how he stands by me.

Do I have a higher purpose or driving force in my life?   Make a mission statement – Ha,  higher purpose is for childish dreams.  Still thinking about a mission. Driving force in my life is to be remembered, to live after I die through love?

How long have I been treated with conventional medicine Not this month but I read about glutathione and I am thinking about it.

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.

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.  Lot of pressure on the job.  Finance has eased a bit with the ridiculous hours.

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.

Vanity, the Spectral Leg and Vows

cropped-shoe-with-brace.jpgI have always been consumed with the way I looked.  I joke “Clothing is my life”.  I can look at a picture and know by the clothes I was wearing what was going on.  It’s how I express myself.  For example, at a certain period in my life, if I was wearing pants to work, it meant I was unhappy and didn’t want to be at that job.

I grew up in a household where “ladies didn’t wear trousers”.

And I was/am a dress and heels kind of woman.  People would say Oh we are getting older now we don’t need to wear heels.  Or isn’t it wonderful that flats are in fashion.  NOT.

I used to walk a 15 – 17 minute mile.

When I went to get fitted for the spectral leg as I call my brace or as the doctor calls it my appliance, the ortho guy told me I would never wear a skirt or heels again and I would have one on both legs and probably my hands.  Can I tell you I will never go to that man again or recommend him?

I still have only one spectral leg which I am actively looking to ditch.  I do still wear skirts and therein is the problem.  I used to take the spectral leg off at work and wear reasonable kitten heels or flats.  Somewhere along the line, I began to fear and kept the spectral on all day.  I had some relatively cute black lace oxfords for summer.  I bought a sensible pair of black oxfords in the fall.  Doesn’t that sound awful – sensible black oxfords?  And I bought some wonderful clothes – beautiful sheath dresses, a skirt with panels.  They look great when I am seated or when I am behind something but the full length?  It’s horrid. It makes me feel really old and ugly.

This is bad for my health, seriously.  My image is intrinsically part of who I am and if I am feeling old and ugly, it’s not good.  I don’t want to hear the nonsense about blah, blah well you are lucky you can still walk.  Uh, I get that but there’s more to me.  And I said when this whole thing started I wasn’t going to let it define me and those freaking shoes do.

So, I keep on looking for something that will be less obtrusive.  Mail order hasn’t been working.  Today we went to Lord and Taylor, one of my favorite stores.  Major shoe sale.  My husband says let’s try it, It’s the first time I have tried to try on shoes in public.  The spectral leg just hung out.  I tried to try on three pairs of shoes.  It did not go well.  And then my husband put the appliance back in the sneaker (it’s the weekend) tied my shoe and covered my leg with my pants.  The salesgirl (she was young) just stood there and said “Wow, till death do us part and all”.  I said “Things happen and life keeps on changing.”  It’s one of my mottos.

But this is not the life we thought about.

We have been through a lot together, sometimes me, sometimes him.  Who knew those vows really meant something?  I am amazed and grateful that we are doing the “in sickness and in health”.  They are not just words.  They are our reality.

One of my doctors said she had noticed a spiritual evolution in me.  I don’t see it.  But there are moments like today with my husband on his knees in a department store helping me that I know grace.