falling

Not Inspiring

Posted on by tresswann

Ok, so I use the spectral leg and a cane, a very pretty one at that.  I work in New York City and commute every day.  I wake a little after 4 in the morning and am at my desk, smiling by 7:30 in the morning.  What most people do not see is the struggle sometimes to make that walk into the office.  I count that as one of the upsides of early.

I try and go to Zumba two nights a week.  It’s a class I have been going  to for several years.  And yes,  I have been able to do less and less.  But I still go. The music connects me with my mother and my family.  We played some of those songs when I was growing up.  And as a family, we always danced.

I am a person.  I am not a condition or an illness.

I hate it when people tell me I am inspiring.  With one major exception,  which I will discuss in a moment.

I hate when people say ” I don’t see how you do it.”  Again, it’s my life.  What am  I going to do, crawl into a cave of illness and defeat?  Why wouldn’t I do it?  Where is self-pity going to get me? It’s not going to help or make things better.  Ditto the “you are so brave”.  Why?  If I don’t wake up in the morning and go, what is there?  I am not brave, I am freaking terrified.  In terms of bravery there is so much more in this world to be brave about other than living a quotidian life.  I belonged to a group when this journey started and one of the women had a granddaughter who was 9 and had something wrong with her ankles.  If I remember correctly, they were disintegrating.  That’s brave.  Her family was brave and strong.  Me, getting up and living my life is not brave.

I always try and tell people when they tell me I am inspiring that I am not.  I do not live nor wish to live a poster child life.   This is my life and my reality.

Ok, there is one instance where I don’t mind as much about the inspiration thing. Yes, you  Jessica Campbell.  Check out her blog MS and Fabulous.  When it comes from someone who is going through what you are going through then it’s alright.  I am awed by Jessica.  There are people who confront these issues daily with style and true grace.  They are inspiring.  I am honored to even be thought of in that company.

I appreciate all my friends who support me and encourage me.  I am grateful for them.  I guess it’s the “outsiders” who consider my daily life inspiring.  It is not.  Choosing to live with a little mobility issue is not inspiring!

We all have issues that we confront. The ones I confront may just be more visually apparent.  And who knows?  My challenges may be so much less than what they appear.

Serious Stomach Stress and Sabotage

Posted on by tresswann

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

Posted on by tresswann

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.

Bananas, really?

Posted on by tresswann

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!

My First Step

Posted on by tresswann

Taking the first step is the hardest. It’s always the hardest, no matter what you do – a job, a relationship, a commitment. This has involved too many first steps and first times.

I have always been “nervy”, high spirited, a stress bunny. I have always fallen. My senior year of college with so many first steps approaching, I spent on the ground of the quad, looking up. It wasn’t my shoes, it was my fear causing me to tumble. Of course, now the doctors say that it was the seeds of my condition manifesting itself. Not true, just a facile diagnosis. Fast forward decades and within the period of a month my father died suddenly and unexpectedly; I undertook financial care of my mother who was subsequently diagnosed with dementia; my then live-in boyfriend, now husband was arrested at my mother’s house and jailed, and they found a lump in my breast that was biopsied the day before Christmas Eve. Stress? I think that’s where it all really took root and started. The only way they would allow me back in the office to work is if I agreed to counseling. The counselor said “Any time you are upset you let your feet out from under you.” Eureka! And during that period I once again was falling. The breast lump was later determined to have been the result of bruising in a fall.

The job ended and so did the dental insurance. A tooth fell out that had had root canal and I had an open hole in my mouth, 2nd doorway in.

So we were walking along the boardwalk a little over ten years ago and I started to stumble and be unable to walk. Husband said my motorcycle boots were the wrong thing to wear. NOT! I have walked blocks and blocks in 3 – 4 inch heels.

Over the next few years, these incidents started coming closer and closer together. I am a person who regularly walked a 15 – 17 minute mile.

First step – I went to my husband’s physician’s assistant. She bears an uncanny resemblance in voice and manner to “The Nanny”. In 15 minutes, she said you have Multiple Sclerosis. I went into the parking lot and had hysterics. Many doctors and many firsts after that – first MRI, first (and only) spinal tap, first neurologist, the diagnosis was confirmed. Or like my husband said to one doctor when you don’t know what to call it this is what you call it. She said he was right.

First step – nutritionist with a ridiculous diet and weird views, a no go

I asked all the doctors if there was anything I could do and that I was open to alternate solutions. One doctor told me to live a good life!

First step – acupuncture. It initially helped a bit. Then I felt like a pin cushion.

And the other first steps – first leg brace, first cane. Yuck.

And gradually realizing that even though I said at the beginning this would not define me or confine me, I woke up one morning and it had.

Through a series of serendipitous events, I found a book The MS Recovery Diet and this led me to the Swank diet. The only way I think I can do this is to blog. So, this is the first step.