Jennifer’s Way, MC and Me

Recently, I read Jennifer’s Way by Jennifer Esposito.  If you don’t know, she’s an actor who suffered for years with undiagnosed celiac disease.

This is a must read even if you do not have a celiac problem.  If you have been on a journey to discover what’s not right with you, this is informative.  It took her years and tons of money.  What hope do the rest of us have? It also reinforced what I have learned on this journey.  It’s up to you.  You are the one who needs to do the research.  You have to keep on asking the questions, over and over. And then, question it again.  It’s up to you to coordinate it all.  This is brutal because to begin with the reason you are on this journey is something is not right.

Three years ago, I started playing and playing is the right word with diet for overcoming my condition.  That’s what we like to call it “MC” for my condition.  A doctor told us that’s what we call it when we don’t know what it is.  And no, not MC.  My belief is, if you name something like that, you give it power.  So, I may be in denial but  that’s how I deal.  Anyhow, just for fun, I cut gluten for one week.  Then I went out to dinner and there were popovers.  Can I tell you, I got a headache immediately.  Yes, there is definitely a relationship between my walking and gluten.  I had an iron stomach as a child.  I could and did eat anything.  And it fascinated my father, who was afraid of vomiting, that I could throw up, most times, and return to the table.  I was sure when this started that I  had no food sensitivities.  I was told that when I was little I was allergic to peaches.  My mother would not have that and fed me little bits until I could eat peaches.

After the gluten, I stopped dairy.  I drank tons of milk as a child.  I only stopped when my brother became chubby and we switched to skim milk.  I also had yogurt for lunch most days.  This started when Dannon was the only yogurt and there were only 8 flavors.  This was hard for me.  Guess what?  The stubborn weight dropped off!  And something else, it was always a family joke.  Right after I was born, the people from my father’s office came to visit.  I passed gas so loudly that this woman nearly dropped me.  Ahem, once I stopped dairy that stopped, too.

One of the things discussed in the book was the hereditary nature of things.  Hmmm.  Another thing that immediately struck me was that for years, Jennifer lived on Pepto Bismol, ginger ale and crackers.  So did Daddy!  I knew once that he really loved me when he gave me his bottle of Pepto when he was leaving me at uni.

I drifted back slowly to the gluten.  Not a lot.  I’ve never really been a bread or pasta fan so no problems there.  I do stay away except for pastry and the occasional piece of cake.  No yogurt but yes to ice cream. I’ve noticed in the last few weeks, yeast triggers stomach pains and weakness.  Oh and secret vice, frozen condensed milk.  I get violent stomach cramps.  Hmmn

It’s just about a month to my birthday so here we go again.  I am going to strive for no gluten or dairy and see what happens.

Read her book.  See what journies it leads you on

December Warrior Check In

Oh my.  I am not working a job and just realized I missed!  I am changing the questions from today to the previous month.  It’s more accurate

How did I feel this past Month?

Well still mixed.  I am still not working.  I have been getting much needed rest.  It is grand not to wake in the 4 a.m.  hour.  Having no money – not so good.   I don’t feel right about decimating my savings.  I worked so hard to put that money away.  I was finally at a point where I felt comfortable.  I know life isn’t about being material, truly but it was nice to go to dinner at a nice place and not stress, to get nice “stuff”.  I am trying hard not to be angry and resentful as that takes away from me and only lets them win.  I do believe that the evil you do comes back to you so I know the person behind what’s been happening will get it back in spades.  The way the world and life works I may not see it and that’s alright.  I do know that this time though I am not going quietly into the night.  I am going to fight it to the best of my abilities and limited finances.  So, in a certain way it is empowering.  I have reflected on what I have walked away from.  I have always been a great walker. Uh, slightly sarcastic.  Instead of dealing with anything, I just walked away, sometimes literally.

What did you do for yourself this month?

See above.  The rest and exercise have been great.  A lot of reflection.  I have started to write more and reconnect with people.  I am also evaluating how I have and am living my life.  On the fun side, getting ready for the holidays.  The Elves workshop is this Sunday which gives me enormous joy.

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

Trying to return to good eating slowly but surely.  It has to be the key.  What I have been thinking is that it really specific to each person within parameters.  So no gluten is a no brainer.  Eggs, not so sure.  Definitely non-processed.  Sugar is bad.  I don’t think it’s possible to cut it out completely but it can be taken way down.

Did I exercise?  What did I do?  How did it feel – I am going to the gym on a regular basis.  It’s showing in my waist but not so much my legs.  I am not walking enough now that I am not working.  This has been complicated by my fitness trackers not being accurate.  I understand for the holidays that situation is going to be fixed.  I am not getting the same addiction to exercise that I have had in the past.  It is partially due to the fact that I can’t do exercise classes.  I have been faithful with my Zumba but am beyond frustrated that I cannot do what I used to.  In my mind I feel the rhythm and I know how simple it is and my body won’t do it.

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

Blessed, especially at this time of year.  We had all the kids the night before Thanksgiving.  It fulfilled a dream I used to have.  I had a family around a table, laughing and talking and eating good food.  I feel grateful that despite not having a job, I have a home and we can eat.  Oh and yes, we somehow managed for now to have decent medical coverage so I can get the drugs I need to keep on walking

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

Alright, no mission statement yet.  I believe in principles and integrity.  Years ago a minister told me I had an enormous capacity for joy.   I haven’t lost it this go round yet.  It’s important to share joy.  I tell my little “elves” that every year.  So, I hope that is something I will leave behind. And I stand on principle, proud of that.  By fighting back, I am fighting for others too.  At Zumba, I have been told I am an inspiration.  I have never wanted seriously to be a poster child.  However, if I can show people I believe in my life maybe they can too.

Conventional medicine  Well, I received the Biotin but unfortunately it is too expensive for me to get without a job and is never covered by insurance

Symptoms – Walking deteriorating a bit I think but I see it directly relational to stress.  I am weaker.  I had problems with a 2.5 pound weight the other day.  I used to easily lift 45.  I have had a UTI which also has impacted me.

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.

What can I do tomorrow to make it better than today?  Eat properly, exercise, have an attitude of gratitude, be productive and positive.

Wishing all joy and health in this season of light and darkness.  We shine light in the darkness and then it ebbs into renewal.  Don’t you think?

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.

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!

Fat – A Plan of Attack

So,  I am a tad depressed.  I have been evaluating the different ways of eating.  I am making my plans.  However,  I haven’t been doing well.  More things seem not to be working well.  Change in plans.  First of all I know all or never doesn’t work.  So,  I thought I’ll just do it month to month.  A month is doable or we can break it down further and do a week at a time.  I knew I wouldn’t be able to start during the holidays though I have tried to mitigate the risk and lapses.  I have been reasonable.  But I thought all things considered I needed to try Swank for a month.  Sugar will be hard but I get it.  No eggs, no legumes – this is harder.  And then I was looking at the fats again.  This and sugar has to be key.  What am I going to do about avocado?  I have been enjoying avocado smoothie.  And it looks like there’s a great pudding ….  So maybe I’ll have to swap?

Looking at a modified paleo.  First,  a go at Swank.

Something has to give.  I have read too many accounts of food making the difference.  I have to do this.

Annette Funicello

This morning I was thinking of Annette Funicello.  She had MS and died of complications from it. That’s what they tell me – I won’t die from it but probably from the complications. Excuse me?  How is that different?  But, anyway I was wondering why she didn’t explore this food option or did she attempt this?  If she did, for how long?  Why didn’t it work?  Or why didn’t she try?

I read the obituaries every morning.  I am of a certain age and my friends’ parents and my contemporaries are passing away.  And I need to know.  The universe is sending me messages as when I opened the obits, it was the anniversary of Annette Funicello’s death.

I take this as a sign that I need to make a decision and a commitment to live.  I must commit to living this lifestyle.  I do not plan of dying from complications.  I owe it to myself to do this the right way.