leg braces

July Warrior Check In

Posted on by tresswann

Back for July and late again.  Life has been a little intense lately.

How do I feel today –   Better than I have for the past few days, see previous blog.  I know I will never go back to the way we used to live.  Today is a holiday and the weather is uneven.  This works out as my plan for this weekend is/was to paint the office and catch up on my life.  I blog sometimes on another site and haven’t done so for ages. I am starting a new business and need to get cracking.  I really need to clear the decks.  It was great not getting up early today and not going anywhere.

What did you do for yourself today?     I slept, I am cooking, blogging and cleaning.  It feels peaceful.  I like spending time in my head.  I think I will read trashy novels.

What did I eat today and how did it make me feel – Still cheating with the good stuff.

Did I exercise? What did I do? How did it feel – Thinking about getting on the Wii and playing games, particularly balance ones.

For whom or what are you grateful? What matters most in life?   Grateful for friends. Grateful husband is back on track. Grateful that I can afford to take the time off and for the little things in life that are huge.

Do I have a higher purpose or driving force in my life?   Make a mission statement –   sounds too affected for me.  Working on the Mission statement, something along the lines of do no evil and never ever give up

How long have I been treated with conventional medicine Ampyra since April. I have walked more than I have in years.  The Ampyra continues to work.  I am walking more with less fatigue.  I even handled Grand Central and Penn pre-holiday!

The first time I had a symptom – June 2004 walking on the beach boardwalk.  Think it’s time to add last time -uh this week cramping and off balance

What symptoms are most troublesome – wearing ugly shoes and not being able to really walk.  Problem with the new spectral leg is my foot is too weak to get into the shoe

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.

How is stress level? Stress is still there but I have taken time off and am trying to keep things in perspective

What can I do tomorrow to make it better than today?   Go to the gym!  Continue to do what makes me happy on my day off.

Until next month.

The Kindness of Strangers and Providence

Posted on by tresswann

Continuing on my “winning” streak.  Monday morning.  The bus is late and doesn’t pull up to the curb.  I have enormous difficulties climbing on.  The good news is that since it was Monday, I could get on.  I made great time.  I was even able to cross Park Avenue in one go without help.  I haven’t been able to do this in months by myself.  There is a security guard in the building who sees me in the morning on his way into work and helps me cross and get in building.  He always tells me he has my back.  And there’s another guard at MetLife that watches out for me and helped me when it had rained and the floor was like icy glass.  I am so excited crossing that I don’t notice the sidewalk is closed.  I have to pick my way to the building entrance in the street.  There is no cut out and after the bus, I can’t manage the curb.  I ask for help and a young guy ear buds and all lifts me up, then asks if I need help with the building stairs.  People always say New Yorkers are rude but I have never found them so.  Perhaps fast and rushed but always helpful.  And that was even when I was well!

I walked well in the .  My left knee started to twinge as I left the office.  My right leg is the problem.  Breezed through Grand Central,  Times Square,  a little buckling.  Penn, just a little.  I always go down to the platform even when they say not to.  Yesterday, something stopped me. My left knee starts to buckle as I am standing there.  It’s odd.  Track change!  People held the elevator for me and I got on the train.  I sit in a car that is way off where I normally get off.  So, I walk to my stairs.  Not bad.  Top of the bannister is gone.  I need this.  However,  I manage to grab on.  I go down stairs one by one sideways.  I see a group of kids at the foot of stairs, look like clean cut teens. Maybe Eagle Scouts?  Crap!  After all this and knee is twinging like mad, I am going to have to say I don’t want to buy candy, chances, donate, whatever.  I go down two long flights of concrete stairs every night.  I do not want to deal.  I get to the second flight and I am beginning to count and I have to go to the bathroom sooo badly.  I get three or four stairs from the bottom and my left knee collapsed meaning I collapse.  Hanging onto bannister with both hands and can I tell you I have on a beautiful cream lace sheath?  Aside from injury, I don’t want this dress ruined.  Teen boys rush up, catch me, straighten me out and help me down stairs.  Nope, not scouts.  Missionaries!  Yup, even offered me water.  That’s what they are doing, offering cold water.  They “saved” me.  And they were there again tonight!  Kindness is all over the place.

Let’s go to the Videotape!

Posted on by tresswann

I am on video all the time and have been for years.    I interviewed for the job I have now via video with London.  My group was based out of London and we met via video at least once a week.  I am/was photogenic.  We used to joke it was just like newscasters used to say in the old days as long as you were seated it didn’t matter what you had on from your waist down.  I learned I smile too much.  Technology has improved and become cheaper so I videoconference even more -US, Ireland, England.  Every other Friday from my home, I attend a videoconference with NJ, NY, London and Tralee.  I keep a Post It over the camera usually.  The lighting makes me look bad and I am very, very vain.  I do remove it for my manager so I can see her eyes and then she turns hers off.  At my desk, someone just complained they only see my  coffee cup.

For the last year I have been using video to record a presentation.  It allows me to add voice and I cut my seated self out.  I have learned from that, that my practice of combing my hair once a week does not work for me, my hair looks better for work “UP” and contact lenses let me look like me.

Well yesterday I had a shock.  I arranged a taping for a manager.  And even though I work in IT and am not technical, I am the one who understands how to set up the equipment.  Same thing at home. I am the one who can program the remote.  It was a big presentation so I started the recording and moved to back of room.  My first thought today when I retrieved the tape was my weight loss shows.  The tape starts with my back to the camera addressing people.  I normally disfavor pants at work.  I was brought up in a “ladies don’t wear trousers home”.  Think I saw my gran in pants once!  But I had a lovely new pantsuit. I am watching, thinking this works and then I moved to the back of the room.  I have never seen myself walk on film and with a cane to boot.  It was AWFUL.  I looked spastic and like Quasimodo.  And I was walking well for me yesterday. I did over 10,000 steps and made it back to the railroad in half an hour.  It was horrible.   I had no idea I looked like that!  I need to fix this.  I need to work harder.  Last summer I wasn’t using a cane at work.  Then I started using it in Penn at night more as a deterrent for people walking into me.  Now, I walk, no let’s be specific, spazz with it all day at work.  At home I lurch around grabbing walls and making my husband crazy.  Hand marks all over.  This has been so insidious.  I nearly wept when I saw the video but again, a home where you never, ever let people see you cry.

I need to start winning this fight,

June Warrior Check In

Posted on by tresswann

Back for June, a little late.

How do I feel today – Today was horrid.  It started out at 4:30 a.m. with a rejection for a job I had interviewed for.  It would have meant getting up later,  more balance and paid medical insurance.  Plus, the area would let my husband work in the same area.  I missed my bus by very little so was late for work.  I had to do a taping at work and enlisted the guy that used to sit behind me.  He’s great to sit with.  Putting it in mild polite terms, he is, at best, a pompous ass to work with.  So,  I have been working on this project for over a year.  One for which he is supposed to act as my admin and enter all the details in the project tool.  I have been told he is claiming credit for it.  I have literally taped this around 20 times.  Couldn’t get the PC to share today for some reason.  He figured it out and gave a great reading.  Then he tells me the script needs to be “wordsmithed”  (I HATE, HATE lingo) and we need professional, real writer.  Grrrr!  Uh, I am one?  It’s the issue I have been facing.  I am currently out of favor, the grass looks greener to them.  After all of that, the tape is lost somewhere on the server.  I had to bring in the laptop (theirs) to do this and it needed security patches installed which took forever and went in a loop.  My phone charger broke.  I thought it had broken in the phone.  My back is hurting me.  It never hurts.  Even with husband helping me I barely made it onto the train.  Some guy dropped his suitcase on my arm.

On the upside, this has all strengthened my resolve.  I will and can get stronger.  I will and can get another job.  It is possible.  I did 12,000 or so steps today.

What did you do for yourself today?

Well, I went to lunch with a friend.  It was peaceful.  I am following through on a promise I made to myself at the beginning of the year to have lunch out of the office.  I ate appropriately, too.

What did I eat today and how did it make me feel – I ate nicely but…. My husband bought me a dish of gelato (verboten) as I type this.  My choice is that if I am going to cheat it will be with good stuff

Did I exercise? What did I do? How did it feel – The steps are moving up.  I am also planning on continuing daily abs work and I have started a yoga challenge and despite back, did not wimp out and did it.  It makes me feel better but also I realize how out of shape I have become.

For whom or what are you grateful? What matters most in life?   Grateful for friends.  My friends were around me today like a swarm.  My husband has been supportive.  What matters most?  Family and friends still hold first place.  The chance and strength to move forward.

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.  Still working on it.  To never give up, give in and be the best I can be.

How long have I been treated with conventional medicine Ampyra since April. I have walked more than I have in years.

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.  I have a new spectral leg a.k.a. brace but still my shoes don’t fit.

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.  Way, way high

What can I do tomorrow to make it better than today?   Continue to try and be strong, stronger.  Go to the gym!  Smile!  Eat consciously and well.

Until next month.

Ampyra, Being a Libra and what else can happen

Posted on by tresswann

Yes, it’s been a long time and so much has happened. And I am out of balance.

This is going to be long as I have lots of catching up to do.

I have had good luck with the Ampyra, no side effects. I am able to stagger longer. I actually am able to walk longer than previously without staggering. I may have plateaued but am not sure. I do seem to be picking up speed. This is relative. I used to walk a 17 minute mile easily. I have walked more than I have in over a year.

Now that I have this drug/tool I need to work on the surrounding bits like diet and exercise to maximize the impact of the drug.

Which brings me to the being Libra/out of balance bit. As I am regaining some mobility I have been reflecting. I have wanted to write for ages! But…. As my walking has minimally improved, I am realizing how narrow and unbalanced my world has become. I know part of it is due to the mobility issue and the rest I am not sure. I wake a little after 4 a.m. Monday through Thursday. I am out the door usually by 5:25 a.m., in the city before 7 a.m.; at my desk by 7:30 a.m. I leave at 3:18 p.m. I have shortened my hours. I am trying not to cut off my nose to spite my face. Most days I work straight through. I then struggle to make the 4:12 p.m. When I was well, if I left that time and walked, I would have been on the 3:46. Since the Ampyra, it’s been a bit better but some days I can barely get myself onto the train. I get in the door around 5:45. I check my work email since I am conscientious. I have mostly checked my email, F B and blogs on train. My husband has the news on. I make a smoothy and/or salad, pack my lunch for the following day, oh yeah maybe fill Tom in on how my day was. By this time, it’s nearly 8, time to take a bath and get ready for bed. I used to go to Zumba twice a week but with winter that stopped. I read in the bath. I used to read a book every two days or so (seriously, I need to read to live) write letters, call friends and do things like hobbies. Ok, I did stay up an hour or so longer and sleep an hour so longer.   I almost never watch a TV program from 8 -9. I never used to see programs at 10 but I could watch between 8 and 10. Yes, I was a little younger, too. But lately I feel really out of balance. As a Libra, funny as it sounds, it hurts even more. I need equilibrium.

And what else can I deal with? Well. I have had dense breasts for years. I always picture them as saying d’uh. So years ago, in the beginning of this downward spiral, my mammo showed something. I told them I had fallen and it could be a bruise but no. So I had a sono and they said biopsy. I had this December 23. New Year’s eve they said it probably had been a bruise. 6 months later, it was the other breast. I call them equal opportunity breasts! It took about 2 years but things finally calmed down. So went for my mammo two Fridays ago and received a voice mail at work on Monday. Husband says it’s nothing. I said they don’t call if it’s good news. Who was right? Me! I wasn’t giving up my time off so next Friday more studies and a sono. I am trying not to think about this. I just can’t take much more.

On a more positive note, even though I am not liking my job (another blog) I am getting more projects. I don’t feel warm and fuzzy. I did apply for a job close to home. I usually don’t like working close to home. Snotty me thinks they are much too insular. You make less money and people think less of you as a woman working. Seriously! All that being said, I am in discussion with an LI company. It would be less than 20 minutes from the house. Ironically, I would have a longer work day. I am slightly optimistic but nervous about showing up with a cane. My argument – I commute and there’s nothing wrong with my brain!

I did get my new spectral leg on Thursday morning and have high hopes. But even though it’s thinner, it looks more permanent. I haven’t really worn it as I am on holiday over 100 miles from home and didn’t want to drive with it untested. I have walked lots. Yesterday over 4 miles, which for me right now is awesome.

Today we went back to Hyde Park and a park ranger suggested to my husband that we could get a wheelchair to use there for free. I thought I was walking ok, not great but alright. After he left I started to cry. Is this what I have come to? Is this how people see me? It’s not how I see me. I don’t want this. We were at Hyde Park and I felt if FDR could be president, persevere with polio, what is going on with me is piddling and surmountable.

Back to staying strong and moving forward, literally one step at a time.