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!!

August Warrior Check In

Life is still intense. I am thinking about the “default future”

How do I feel today –   Pretty crappy.  I was in a slightly manic phase the last few weeks.  I couldn’t do things fast enough.  I knew I had to crash and I have.  I put in a high stress over 50 hour workweek this week.  Bed late every night.  I made a presentation to our head on Friday.  Well, all I can say was it wasn’t negative.  It is hard to live with the continual uncertainty about the job.  There never seems to be enough time.  I am a Libra and feel seriously out of balance.  I need to clear the decks and can’t.  I have started a new venture except I haven’t.  I have the skills and the tools to rock it and little Miss Sabotage strikes again.   The MRI shows no change but I seem to be getting worse.  I  think  I am going to look into genome testing.

What did you do for yourself today?

I tried to sleep late.  I read the Sunday times,  yeah!  Straightened up a bit.  Sent in a job application,  sat outside in the gazebo. Did NOT go grocery shopping or any kind of shopping.

What did I eat today and how did it make me feel – Getting back to clean and it’s the right thing

Did I exercise? What did I do? How did it feel – No excuse not to go to the gym and I didn’t.  Miss Sabotage.  My fitbit has been wonky lately and I know that I had at least two days closer to 12,000 steps.  Ain’t drugs grand?  But zip didn’t record

For whom or what are you grateful? What matters most in life?   I am blessed with the most amazing friends, truly.  I have a husband who watches over me.  I continue to have possibilities.  And this year, beautiful flowers in the garden

Do I have a higher purpose or driving force in my life?   Make a mission statement –   Never give up?

How long have I been treated with conventional medicine Ampyra since April.  The Ampyra continues to work.  I am walking more with less fatigue.  Friday high stress day and took subway to Village during rush hour

The first time I had a symptom – June 2004 walking on the beach boardwalk.  Think it’s time to add last time -off balance, weak knees

What symptoms are most troublesome -still hung up on the ugly shoes!  And my hands seem to be weakening

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this. Still!  I let go of me and who I am and could be.  Same as last month

How is stress level? Skyrocketing with work issues

What can I do tomorrow to make it better than today?   Rest, take a step back.  Contemplate that default future and SMILE

Until next month.

May Warrior Check In

Back for MAY :

How do I feel today – Nice day.  Attended a tea.  I actually did a table.  I was all tizzed about it but think it went well.  However, mixed feelings.  This is my fourth one.  I walked in first time four years ago  in a dress, today with a cane and pants.  But I am walking better than I have due to the drug.

What did you do for yourself today?

See above.  I went to a tea, very girly.  My husband was wonderful and helped set up and breakdown.  There’s a jewelry boutique so I got to shop!  And then went to Odd Job afterwards for this and that.  I didn’t work.  It’s a real break.

What did I eat today and how did it make me feel – BAD.  It was tea!  I did do a smoothy before I went but scones, salmon tea sandwiches, chocolate.  Then Chinese food.  I have been seriously sliding and need to recommit to proper eating.  I need to max the opportunity the Ampyra has given me.

Did I exercise? What did I do? How did it feel – Still not going to the gym or Zumba. But I am walking more.  I will get to gym.  This was the least I have walked all week.

For whom or what are you grateful? What matters most in life?   Grateful for friends and the possibilities of new ones.  Grateful for the people I am meeting through the blog.  Ampyra.  New possibilities.

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.  Uh, maybe some sort of sharing

How long have I been treated with conventional medicine Ampyra,  two weeks.  And it is working.  I was able to walk longer and stronger.

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

What symptoms are most troublesome – being off balance and not walking well, wearing ugly shoes and consequently ugly clothes

Do I blame myself for things –  Yes, I am still blaming myself for not being aggressive against this. Still!  And I think always.  It’s funny how we don’t take things seriously

How is stress level? It’s high.  Trying to tone it down.

What can I do tomorrow to make it better than today?   Start over.  It’s a new month. Have a different day.  And yes, I am thinking about things other than disease and death. I am thinking about art and new jobs and possibilities, flowers and spring.

Until next month.

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.

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.

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.