braces

Poster Children

Posted on by tresswann

I have a thing about poster “children”.  When I received my initial diagnosis, me being me, I said let me learn everything about it, I can.  I am notorious for doing my homework.  First thing, we reached out to the MS society.  My diagnosis, which I reject or maybe deny, is PPMS.    Actually, I reject but that’s another day.  So we receive their packet.   Talk about poster children.  The PPMS brochure has woman in a scooter and she talks about how wonderful it is now that she has her scooter.  F’ing excuse me?  Not only is this not what I want to hear, it’s a piss poor message as far as I am concerned.  So, how I am going to cope and fight with this disease is bop around on a scooter?  Really?  Not me, not yet, probably God’s willing not ever.  We start with surrender and acceptance?  Not working for me and I don’t think it should!  We scratch MS society off our list and decide to fly solo.

Next, just this month we receive the newsletter from the Institute that’s treating me.  Monitoring is actually a better description.  See inspiring story on page…  Flip to page.  Another woman saying she wept buckets when they told her to use a cane  but now it is sooo wonderful.  Well, I didn’t weep when we had that conversation. I argued and acquiesced.  I don’t cry as a rule in front of other people.  I work really hard at not crying about this.  When I do, it’s usually frustration and rage as oppose to fear.  I have to use a cane now most of the time in public and it is so not wonderful.  I understand I do need to be safe.

What kind of message is being sent?  Are we Victorian?  Am I supposed to lie back and think of England?  I get it about false hope.  But what about possibilities and determination?  They don’t seem to fit in this “traditional” setting.  Well, I worked for years in fashion and was always considered trendy so this is my take.  Screw these “poster children”,  my trend is not to go quietly into the night or anywhere, not to surrender and not to accept defeat.

Broken Canes, Mary Poppins and Peter Pan

Posted on by tresswann

Last Monday morning I started off to work.  It was the first time I think in weeks that I was going to work and in a skirt.  No clunky snow shoes.  I had on my regular granny nanny tie shoes.  I was feeling positive.  As I got on the escalator the handle of my cane felt weird.  Hmmm,  I didn’t realize it was jointed.  I use collapsible canes.  And until the last few months didn’t break it out until I was in the last leg of the way home at Penn, then tucked it away on the train so when I stepped out it was safe in my back pack.  That being said I also go with pretty.  Not for me those orthopedic metal looking horrors.   In fact, we argued with my Dad when he started using one for whatever reason, we got him an Irish walking stick.  My first one was black with multi colored butterfly.  This one was dark purple with flowers.    I get to the top of the escalator, stop to adjust backpack and the handle split apart and flew off.    Two men who are on my train picked up the pieces and handed them to me.  OK so I am missing the handle but I still have the stick part, just about the same height, no problem, right?  Wrong, wrong, wrong.  It devastated me to realize that I couldn’t walk in empty space without it.  When did this happen?  I stumbled and staggered to the bus.  Then I had to walk the block to the office.  I held onto a marble barrier.  Didn’t see my friend who sometimes crosses with me.  There is a security guard who watches out for me and he was coming into work and helped me up the steps and into the building.  The building is a city block so I had to prop myself up another 3/4 block to get to my floor and then walk half a block to my desk.  I was shattered.  Being nervous made it so much worse.  During the day at work I don’t use the cane unless I go to another floor.

I recovered a bit and came up with Plan B.  I did realize as soon as it broke that there was no way that I could walk and do my subway usual without it and was going to take a cab.  My stagger into work when I wasn’t fatigued, was horrible.  So I initially thought cab, not happening!

One of my friends volunteered to go down to Duane Reade and get me another cane.  No,  I have a pretty spring one at home. My friend, the receptionist, usually has a golf umbrella.  My thought, it’s the right height with a handle.  My other friend goes to get it.  I call husband who says are you crazy?  I’ll come in with spare cane.

He calls and tells the kids that he pictures me with the umbrella being lifted up and sailing over Grand Central, like Mary Poppins.  Kids haven’t stopped giggling.  And sometimes, he makes me feel like I am being dragged by Mary Poppins when he tries to make me walk faster and longer.  I am skimming above the sidewalk.

And me, I miss being Peter Pan.  Didn’t ya think you could fly like Peter when you were younger?  I did.  I can see and feel it in my mind.  And I want to be Peter again.  I want to be free and soar outside of my body again.  I will figure this out!

March Warrior Check In

Posted on by tresswann

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.

Falling Flat on My Face, February and Fragility

Posted on by tresswann

February has been a hard month for me.  I ended up going into the office only 7 days between the extreme cold and the weather.  I am lucky to be able to work from home and got tons done.  Also,  I welcomed the rest,  few 4:15 a.m.s.  Excellent.  The flip side is I have a tiny house and even to get up and walk to the bathroom, I don’t get in enough walking.  I work in a building where each floor is a city block.  Depending on what my schedule is I can literally walk miles at work.  Ok so now it’s with a brace and a cane but still.

Went to work on Wednesday and took a cab in the morning.  The bus stop was icy.  I went out to lunch but it was only across the street.  My New Year’s plan which has been derailed by the weather is to go to lunch once a week.  I need to reconnect myself.  I swore when this whole thing started that I wouldn’t let this condition/disease confine me or define me.  And just like my ability to walk, it gradually took over.   I am fighting back.  Wednesday night I felt ok and thought I would do my usual Grand Central, Times Square Penn Station deal.  I left work early so I could take an earlier train.  It’s on a track with an escalator so it’s closer and I walk less.  Well,  I started to fall apart in Times Square.  The train is the 4:12, I was on escalator at 4:11  and the bartender literally held the door for me.  I struggled into a seat.  The ride is an hour and that is enough recovery time for me.  My station is the last stop and almost everyone is gone.  I got up and was in the door when the train pulled in.  I got off carefully (I have to hold on) and thought Ok that’s good.  The next thing I remember I was flat on my face with gushing blood.  All of a sudden, thankfully, there were a lot of people on the platform.  Someone asked, “Are you alright?”  Normally, I am very perky and reassuring.  This time I had to say, I don’t know.  Two many literally lifted me up as if I was a rag doll.  Oh, and another thing.  I am not prone to profanity but after saying I don’t know, I added, “I really f–ked up my face, didn’t I” .  I have not fallen on my face in more than 25 years.  The last time I did I was 24, drunk and dancing in a bar in the Hamptons.  Life does change.  So they raised me and my gushing face up.  A businessman provided tissue and blotted at my face.  I thought I had literally split my lip.  Nope.  I am blessed and lucky.  And my legs felt great.  My face took the brunt of this fall.  Now, the railroad guy comes out of the train.  They want to get me medical attention, file a report, get me a cab, call someone.    No.  My husband doesn’t drive.  I refused.  This station doesn’t have an escalator or elevator so I gimp down two flights of concrete stairs normally.  A man offered to help me down the stairs.  I had a knapsack and a pocketbook.   He showed me a badge and said he was a federal officer so my things were safe.  I didn’t care.  I said anyone is welcome to it.  He was great!   He helped me down the stairs which did have patches of ice.  And he got me into my car.  Husband freaked.  Yes, it looks like I went rounds with someone.  He thinks it reflects badly on him.

Then I went into work the next day.  This is the kind of place I work in, people came in and said nothing!   I have a swollen bloody lip,  a scraped bloody chin and huge bruise under my chin.  Husband thought  it would be a problem for me.  If I fall, will they renew my contract?  Actually,  I felt worse when I got into work.  It hit me, all the might haves.  I have been so lucky and so blessed.  This could have been so much worse.  Thursday night, there was almost no one on the platform.

As I have struggled this week I have been thinking.  I changed the way I eat significantly.  Okay, as I have admitted, I have not gone full force.  I still eat sugar. It’s significantly reduced.  Dairy and eggs radically down.  Never much of a red meat eater but more minimal.

I am getting worse not better.  And I hate when people try and whitewash it.  And I know I am lucky, truly.  I am still walking and I am not going to stop.  This month was rough as I couldn’t literally get out of the house.  That meant much less walking though I did try to do at least 30 minutes on the stepper every night.  I couldn’t get to Zumba or the gym.  In fact, I was planning on going to the gym Wednesday night and breaking the ice so to speak.    So, amp up the food plan and the exercise.  Keep moving forward.

On to fragility.  The cell rings yesterday and I am working.  I see it’s my one of my exes.  It’s a wild, wild life.  I keep in touch with all my exes, all the live ones, except my first husband.  I do have two dead ones.  Stories for another day but both died when I was young, one of AIDS, one of cancer.  And yes, for years I had the spectre of AIDS hanging over me.  The one after them said I am never breaking up with you.  Men who leave you die.  Well, I left him and he’s still alive.  After that, I was the one that did the leaving.  I lived with the ex whose number showed for several years.  It was not healthy.  He is significantly older than me.  We would have conversations and he would mention an event and ask if I remembered.  My response was usually “I was three!” or “Uh, I wasn’t born yet.”  We maintain cordial relations but he still can be controlling and domineering.  I let it go to voice, picked up the message and it was his daughter saying we think we have the right person, you lived with my Dad, he’s in cardiac ICU.  I called back immediately and reached his son.  He told me that ex is in medically induced coma, had massive heart attack and they are reaching out to the people that were important in his life so they are not surprised. I am devastated.  He’s tough and ornery so I am not counting him out .  It’s ironic.  He hit me once in the face and the next time, because there always is a next time, I punched him in the chest before he could touch me and knocked him out.  There never was a next time after that.  He said “You could really have hurt me”  I was “Exactly”.  I left. We made our peace.

This is all, the fall, the deterioration and the ex, making me feel fragile.  I am tougher than this.  It literally hurts to smile right now but I am trying.  I can and will rise again.

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.

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.