March Warrior Check In

Back for March:

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

What did you do for yourself today?

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

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

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

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

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

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

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

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

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

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

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

Until next month.

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.

Serious Stomach Stress and Sabotage

My first marriage was to a man, who although pleasant, had less financial sense than a 5 year old.  This wasn’t just me – his own mother was relieved we were marrying so I could take care of him.  I had lost my job and had started a business using my savings and unemployment.  He basically made less working than I did on unemployment. His idea – play Lotto.  He bought the you gotta be in it to win it ad.

Yup,  I had massive credit card debt.  One month, the bills came in, I literally doubled over and could not stand up.  I had massive pain in my stomach.  It took about two days till I could stand, do anything and of course, pay those bills.  The second month it happened, I figured out the trend.  It continued thereafter.  Usually, I could stand but could not do much of anything else.  It’s hard to read or think when you are in pain.  The marriage ended.  I cleared up the debt and it basically went away.  However, anytime I was in a stressful situation, it came back.  Mercifully, the duration was only a few hours and I have found that tea and warmth around my stomach help.

My last real bout of this was 10 years ago or so when my life started falling apart or changing.  I was seeing a counselor at the time and did manage to show up for an appointment in distress.  She suggested it could be irritable bowel or colitis.  Before I could go to the doctor, I was laid off. As I told the man who let me go “Thank you.  Summer on the beach with shells in my hair”.  No more stomach problems.

Periodically, about once a year or so, I get an “attack”, usually short-lived.

I am so much more than the condition(s) that are afflicting me.  Most times, I forget until I try to stand up or walk.   Right now, I am involved in projects at my job that not only do I enjoy but are high profile.  I do have a meeting scheduled with the top guy to present my work. I have noticed through out my working life that if things are going well or have the potential to go well, I get sick, typically a respiratory thing and/or fever.  I have never taken a final in high school or college without a fever.  I closed on my mother’s house and walked out of the offices with a 102 fever and had to go to bed for a few days.  My body knows.  So, I am working away on this presentation and putting in major time.  It’s the reason I haven’t blogged.  I felt prepared and rather calm.  Then I had two meetings and need to do more work.  Not a problem.  I have been house bound due to the weather.  Oh yeah, the other night, whammo!  My stomach thing hit full force.  I was grey, perspiring, in intense pain, the kind where every time you move and every way you move, hurts.  I knew exactly where it was coming from.  My body was telling me that I could not move forward and do this.  I couldn’t work.  I couldn’t think, I couldn’t sleep.  Taking deep breaths hurt!  3 a.m. found me panting.  My brain struggled through to my body and said Enough!  I am approaching a milestone age which has been weighing on me.  There are things I want to accomplish with my life.  It’s time for me to deal with it and realize what’s left of my potential.  I woke the next morning and started going for it.  As I write this my stomach is twinging but I am writing and working.  I am not going to let my body continue to sabotage me.  And isn’t that what part of this condition is?  My body literally not allowing me to move forward?  When I was in counseling during that bad time, the counselor said when you get upset you let your feet out from under you.  I am not saying that what’s happening with me is psychosomatic.  It isn’t but I am also saying the mind/body connection is a powerful one.

And as I said when I started this unforeseen journey, I will overcome.  I will rise.  It will be different.

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.

Drinking the Kool Aid

My old manager always said when someone bought into something that they had drunk the Kool-Aid.  It wasn’t necessarily a good thing.  It was definitely an illusion to Jonestown and he didn’t mean it positively.

Oh, and he never said that about me.

I am not a Kool Aid drinker.  When I was little and everyone had birthday parties with Kool Aid, I didn’t drink it.  I am told it made me sick.  My mother, who was very advanced for her time, didn’t believe in it.  No sugary drinks for us.  I didn’t drink soda till junior high.  I digress.  This is about Kool Aid.  Well, not really. It’s about buying into something whole heartedly.  I don’t think I ever do.

I have written about my mother and her force and determination.  Well, my Dad was a non-Kool Aid drinker.  He was always skeptical about everything.  He always took a step back.  It was something we argued about.

However,  I never ran with the pack or the clique.  My mother used to say that I conformed to non-conformity. I probably still do.  I pick and I choose.

That’s what I am doing with this food thing.  Picking and choosing.  After all, I am the editor’s daughter.  In addition to writing, he was an editor. I know I edit.

And I don’t commit.  It’s my failing.  I have had more than one manager at work who has said if I ever committed I would be frightening.  And as to relationships…….  My sister friends I commit to with a fierce loyalty.  For them I would drink the Kool Aid and I do drink the Kool Aid of friendship.  Men were another story.

So, where does this leave me?  Do I drink the Kool Aid of this way of eating?  Can I drink it?  Maybe Kool Aid isn’t right for me?

I read all these people that are drinking it and getting personally filtered water and questioning everything they eat.  Have you ever been out to eat with one of those people who question the wait staff?  And then basically want it cooked without anything?    Like why bother to go out to eat?  I think that makes it uncomfortable for everyone. But the people who succeed appear to be fanatic.  I was raised in a household where fanaticism was antithetical to our being.  Also, funny enough, I am a Libra.  Whilst I may not buy into the whole astrology thing (there goes the Kool Aid again) I need balance.  To be that extreme, puts me out of balance.

What I do need to do is finally, ultimately commit to me.  If I make that leap then I can eat the way that will help me. I can rise.

.

What would Reima Do?

REIMA 1940'S - 50'S

Reima was my mother. I am literally her pale shadow. One of the things I am deeply grateful for is that my mother passed away before she could see me like this. Two of my mother’s best friends at different times had MS and they both died. In fact, one of my earliest memories is walking with my mother and her friend and a stroller. I don’t think it was for me and there were two little brothers. I am not sure which one it might have been for. I was very, very little. Her friend had an attack and Reima had her walk with the stroller. Looking back on it, it must have been terrifying for all of them. They were young, alone with anywhere from 2 -4 little kids. She got worse and died before I was 10. We moved and there was a friend on our block. She became wheelchair bound quickly. She, too, died from this. So, when they told me that this wouldn’t kill me, I wasn’t buying any part of it.

More about Reima – she had a very high tolerance for pain. She thought childbirth was vastly overrated. She used to get her teeth drilled without anything. She maintained the same weight for just about her whole life – 7 pounds more than before she became pregnant with me. She made sure that she weighed the same every year when she went to the doctor. When she decided to quit smoking, she just stopped and yes, she didn’t gain an ounce! When she made up her mind to do something, she just did it. She came to this country essentially by herself because she wanted to.

So if my mother Reima was confronted with this and knew that it could be addressed with not having certain foods, it would have been done immediately, no question, no hesitation. And then there’s me. I want to, I need to and I am not. Well, I gave up gluten. I no longer have yogurt. Practically no eggs. Almost no red meat, never really been my thing. But no beans, no soy, no apples, no bananas (depending on who you read) no eggplant, tomato, maybe corn, no shellfish.   I like fish and chicken. I like grilled things. Reima didn’t believe in deep frying. She was way in advance of her time in terms of food.

So, I need to think what would Reima do and do it.

Working and 9 Cups

I am taking elements from all the different ways of eating I have been exploring: Wahls, Swank, Clean Cuisine, MS Diet. I am trying to take the best of everything and maybe create something will work for me and on me. Well, I really like the concepts of 9 cups of fruits and vegetables a day. However, another thing I have noticed (and I am truly grateful this does not apply to me) is that these people were so disabled they could not work.   I work. I wake around 4 a.m. every morning, commute close to two hours each way and though I tend to demur, some people say I have a pretty high powered job. So, back to the 9 cups. Yesterday, Sunday, I set up some smoothies in advance. Smoothies are a great way to get in vegetables, fruits and nutrients. There is one I adore from Sparkpeople that sets me up for four cups – two cups of kale, one cup of blueberries and a banana. As I mentioned earlier, I wake around 4 a.m. I am a morning person. Most mornings I wake with a smile, literally. I am one of those people, people hate in the morning. I will beam and tell you we are going to have a great day. I can do this without coffee. I prefer coffee. However, cheerful and all does not do blender in the morning, even weekend later mornings. So, I thought I’d set myself up for success this week by making a few yesterday. It took nearly an hour! Oh, and by the way, I am a good cook so I know how to do my mise en place etc. Back to 9 so I am going to work, no private office, lots of meeting, interaction and commuting. There are logistics involved here.

I do have issues so there is literally only so much I can physically take into work with me. There is that long commute, most of it on public transport. Therefore, I am not using the public facilities. I have to time this!

Next is prep. Uh, my energy is kinda limited. My husband helps but.. And then actually eating all this. And it’s not the only thing I need to eat.

So how do you eat this healthily and correctly and hold down a job without lots of help? I know I have to focus on my health but work too and uh, yea, that exercise thing and getting enough sleep?   Just sayin’

Bananas, really?

Who would have thought that bananas are my new savior? As a child, I couldn’t stand them. I was not really allowed not to eat food but I stood my ground with bananas. Never on breakfast cereal. I was the little girl who adored stewed prunes. Being West Indian, we made fritters. Those I liked. Banana bread, not so much. It was barely tolerable. And Grandma used to make more of a baked fritter, dense and with raisins. Oh and baked with a little orange juice and brown sugar, a nice treat.

As an adult living on my own, I NEVER bought bananas.

Then a few years ago as this journey started, I felt I had to eat them for the potassium. Plus my husband will eat them. So, I started to eat them. A man at work started leaving them on my desk. I started losing a little weight. They were a necessary evil.

Then with this new way of eating came the smoothie and getting rid of sugar. The banana makes it possible! Who knew? It adds creaminess and sweetness to the smoothies. I feel full and want less sugar. I freaking crave this.

I did read in one of the Healing books – no bananas. What? I cannot see this working out. So I am continuing with my bananas, disguised of course!

Warrior Questions

Even though I am not a Wahl’s warrior, I think her questionnaire is a good way to start the year so here goes:

How do I feel today – Well, I have the usual New Year’s blues. I am always fearful of the New Year. I know what I had. I survived it. I am still literally standing today. I don’t know what the New Year will bring, the vast uncharted territory. We saw Life of Pi this past week and it’s sort of how I feel. I am embarking on a journey without a map with something that wants to destroy me. I should have the power and the tools to tame it. Can I? As to the physical, I tried some basic lift your leg exercises and my left which is supposed to be the good one, is for crap. I feel slightly determined and slightly overwhelmed today.

What did you do for yourself today? I finished reading a trashy novel with breakfast which felt great and here I am writing which has always worked for me. And I am going to finish listening to Serial

What did I eat today and how did it make me feel – Day isn’t over but I started positively with homemade granola and a cranberry smoothie.

Did I exercise? What did I do? How did it feel – Exercise, see above and I hope to get back to my abs.

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.

Do I have a higher purpose or driving force in my life?   Make a mission statement – Ha, higher purpose is for childish dreams. Driving force – pay my bills and continue to walk. Mission statement -beyond me at this point. Something about sharing my journey. It’s self serving

How long have I been treated with conventional medicine Well, they haven’t really treated me now, have they? I have the spectral leg aka the brace. I was going to physical therapy. I did acupuncture for two years.

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 – Sure, being stupidly cheap and not getting the hole in my mouth fixed. I think a virus amok kickstarted this. Not searching hard enough or asking the right questions. Not being aggressive enough.

How is stress level? Not as bad as it’s been. Financially, things are frightening! It’s on me. I don’t want to keep on getting up at 4 something. It’s not healthy for me on all kinds of levels and I can’t see my way out. Time challenges. And then all that walking in public areas that I struggle with

What can I do tomorrow to make it better than today?   Well, eat properly, exercise and breathe. Make a plan.

I will do this questionnaire at the beginning of the month. And let’s be real, on the weekend.