falling

My Birthday

Posted on by tresswann

Well,  I hit my milestone today.   I have been so wrapped up in this for the past year.  Finally, this week I decided it wasn’t all of that.

So,  I took time off from work and drove up to Finger Lakes to spend some time with one of my besties and husband.  Sunday night we sat outside on the deck and watched the blood moon.  A magical beginning.

Today we drove and saw art and did a little shopping.  And then great wine with friend.

I feel so blessed.  I may have problems walking but I am surrounded by love and new possibilities.  Both my stepsons and their girlfriends called me.  I had best wishes on Facebook.  Messages from friends when I woke.  Awesome card from husband.

I have hope despite all.

Age is a number and a troubling number at that.  I have never done well with numbers.  Can’t say I am looking forward but not looking back either.

I will make this last part of my life count!

I am so blessed

September Warrior Check In

Posted on by tresswann

I recently took one of those Facebook  quizzes and both my first and middle names mean warrior princess

How do I feel today  –   Mixed.  Recently, there has been a reorganization at work and my medical excuse is not being honored.  So, on the positive side  I slept till nearly 7 a.m. this morning.  And I am not allowed to work from home at all.  Upside, I am getting back in touch with me and what makes me tick and joyous.  Other side:  I am limited.  I am planning a tea with friends next weekend and am dependent on my husband to get things.  I have a wonderful tea set.  It’s upstairs boxed because he doesn’t like it.  It’s too far in the eaves for me to pull it out so I won’t be able to use it.  This frustrates and hurts me.  He is angry and moody today which also brings me down.  I realize this must be hard for him but it is harder for me.  I fell yesterday morning and that is upsetting him.  I am working on something, late as usual, that is pictures of both of us.  I was short some of me as a child and went upstairs to get a few.  It hurts.  I have no children.  My brother and I are estranged.  These photos mean nothing to anyone but me.

What did you do for yourself today?

Well,  I am taking stepson to lunch.  I am going back upstairs to straighten up.  I am planning my tea.  Maybe, just maybe I’ll get to read

What did I eat today and how did it make me feel – I have been moving more and more to eating in a way that will help me.

Did I exercise?  What did I do?  How did it feel – Replaced Fitbit with Jawbone and trying to calibrate it.  Gym is a possibility.  I am looking for a new job so want to be/appear stronger.

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

I have been thinking a lot this month about the stepkids.  I am so blessed.  And I get along with their girlfriends/fiancee.  I asked fiancee to lunch and she thought I was mad at her but accepted anyway.  How cool is that?  It was to give her something for her wedding day.  After a certain point I never thought I would have children in my life.  I guess I do. It’s hard for me to believe they care for me. It’s a great gift.  And one of the reasons I have them is because of my friends.  I have friends who are amazing lifelines to me.  When I first became involved with the boys they were my guiding lights.  I am blessed!

Do I have a higher purpose or driving force in my life?   Make a mission statement –   I still have problems with this one.   I had a minister who once said I had a great capacity for joy.  Let’s go with that one for now.  I do an elves workshop for nieces every year and I tell them it’s about spreading joy.

How long have I been treated with conventional medicine Ampyra since April.  The Ampyra continues to work.

I met a man with a walkaid device and that looks appealing

The first time I had a symptom – June 2004 walking on the beach boardwalk.  Fell twice at home recently but it’s due to stress.

What symptoms are most troublesome  -still hung up on the ugly shoes!  And my hands seem to be weakening.  Same as last month.  Being dependent or limited is driving me wid.

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.  This month thinking about the self sabotage

How is stress level? Very bad.  Work is worse and it’s having a financial impact.  Like Scarlett O’Hara, I’ll think about that tomorrow.

What can I do tomorrow to make it better than today?   Continue to get back in touch with me and what gives me joy.  Organize the clutter

Until next month.

When It Rains….

Posted on by tresswann

I am having problems at work.  Change in the organization and I am no longer allowed to work at home, even with the doctor’s note.  I am getting it sorted but in the meantime it’s having a significant financial, mental and physical impact. I have a letter from my doctor saying I should not be in the office when is 85 or more.  Me, I thought 90.  The problem is I commute and am in the subways.  The first time must have been 6 years ago or so and I arrived home with 102.5 fever.  I was in Times Square and all of a sudden could barely walk.  Doctor didn’t know what came first.  Until  I get sorted out, I am continuing to go in.  I see where this is going – oh she can’t be here and she can’t do the work.  So I struggle and husband comes in and helps me home.  It is expensive.

Wednesday, when I left they were announcing delays and signal problems.  Normally,  I would have turned around and gone home and worked.  Wednesday would have been perfect as I had training scheduled with Ireland and they had wanted it early but in the office my best offer is 730 a.m.  The ride which is usually under an hour was almost two and a half.  I can’t sit or stand for long times.  Then just as we started to move,  I heard for real for the first time “Is there a doctor, medical personnel or law enforcement on the train.  If so, please come to car number in the front of the train.”  Now,  I get out in NYC, people are late plus it’s peak so a pushy, fast mob.  Exactly why I travel alternate hours.  I miss my pill which helps me walk.  No water and it can’t be broken apart.  Get on the bus and they announce a detour as the street is closed.  I can’t make this stuff up!

My husband can’t come in and help me because the trains aren’t working,  I have to leave early to avoid any mess.  I do make it through the stations in the high heat.  I arrive at Penn, with  4 minutes to spare for a train to where I need to go.  I have to tell you I love travelling with the construction workers.  They pick me up when I fall and super polite. I had to walk downstairs – numerous offers of help and no one pushed me on the train.  I get a seat!  Settle in like a bird in a nest.  Announcement:  We are experiencing equipment problems.  Really!  Luckily, it sorted out.  I was so grateful.

Cut to this morning – I have on a white toile dress.  Get my coffee, granola with milk, walk into my office/den and left toe goes.  Everything flies all over the place.  Upside nothing broke – not my body, not the cup, not the bowl.  And miraculously, not a drop on the white dress.  I know I fell due to the stress!

But I am now off for a few days!

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,

After Mammo

Posted on by tresswann

No suspense, it’s all fine!  I am relieved but have a lot to say.  I went Friday and they took two more views and an ultrasound.  By the time I reached the scan, I was resigned to it going badly as every time they pressed the wand or whatever, it hurt.  Of course it did, ninny.  Your breast had just been smashed and squashed.  Talk about dense!

So more on the mammo. It seemed every other woman was there for a second look.  It hit me that they used to do the two views originally.  Then you used to sit around and wait for the results.  I don’t know which way is worst.  I was thinking again this week, it’s all about the money.  Where I go you take everything on top off, put your things in a plastic bag and sit in a top that is almost impossible to close.  So, would it take that much more time to take your things off in the room?  It is so sad, all these tense women sitting around holding plastic bags like refuges from a lost store.

Ok, there’s more.

12 years ago,  I had a similar scare.  It was worse and my high school boyfriend drove me to the biopsy December 23rd.  I was flashing unhappy memories.

Friday,  I had a friend to lunch.  My thinking was whether the results were good or bad, it would be good to be with a friend.  My husband was going over his sister’s to supervise a construction project.  So, we are sitting around having a nice time.  I have a lovely bottle of wine on the table.  We are also drinking steeped tea.  A very girly lunch, pink china, crystal. Friend says who is coming over.  I live on an odd block with only two other houses.  It’s out of the way.  We never get trick or treaters.   It’s husband’s probation officer!  I tell them where he is, ask if they want to come in which in retrospect may not be the best idea with wine on the table.  We are not supposed to have alcohol in the house.  They don’t come in but I am now flashing back big time.

So, 12 years ago and I believe this is one of the seeds that let whatever is in my body out and running amok;  I received a call at work that my Dad wanted to go to the hospital.  This was 9:30 a.m. I left work immediately.  My father was dead before 11 a.m. I found out my mother was in 6 figure debt and had no handle whatsoever on reality.  I gave the eulogy.

A week later, my now husband was arrested at my mother’s house for non payment of child support.  This was bogus as his ex-wife knew there was a violation of probation outstanding.  She is not a bright bulb and the police had been coming to her house looking for him and terrifying her 13 year old.  He was jailed.  This started a new chapter in my life.  I am suburban, middle class.  This was f’ing terrifying. Visiting jail and going to court were experiences I never expected to have.  On my first visit, a woman said well, if her husband wasn’t available, she’d visit her Dad.  This was a completely different world for me and one I have been living in since.  And I fell as I am wont to do when upset.  At work, my manager who worked out of the UK wanted to write me out of work for the rest of the year.  She could have if I was in the UK. Our HR person who I always refer to as Topo Gigo because she bears an astonishing resemblance to the little mouse told me I could do it unpaid.  I was responsible for three households! Compromise:  I had to go for counseling.  The counselor figured out that when I was upset, I let my feet out literally from under me.  According to my neurologist,  I must have had the condition since then or earlier.  Two weeks later, I had the bad mammo with the lump.  I kept on insisting it was the fall.  They said not.  Guess what? After all the tests and worry, it was the fall.  All this pain and fear  came rushing back on Friday.  But on the positive side, I had and have some amazing friends who have stuck by me steadfastly through all of this.   I did survive and have continued to survive.  I hated flashing back.  But once again, I made it through with the help of a friend.  Life is full of possibilities.

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.

Aftermath of the Doctor’s Visit

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What can I say?  I never like going to the neurologist as I find it a very draining experience. I hate seeing people worse off  than  me.   She is always telling me how I am not doing badly. Last time she said I was more spiritual.  Don’t get me wrong.  She is nice and listens to me.  Not sure, if she really hears me.  When we first started, she said everything wasn’t all about the disease/condition.  She was for me and my kitten heels.  The last few years the exams have been cursory.  My husband thought that once I wasn’t participating in research drugs she wasn’t really interested in me.

I have had a bad few weeks. Not enough walking or exercise due to bad winter.    I am never in pain except for when I fall.  My knee has been hurting me and it’s not a “fall” hurt.  I have been barely able to walk.  Well, I did turn a corner last Thursday, even though I did fall but I walked 11,500 steps.  Still, it’s been a real struggle.  I hate the way I am walking and looking.  I knew this time wasn’t going to be good.

I had the very sympathetic look – so sorry you are falling more often with the unspoken words what do you expect?

Bad news – we expect your symptoms to worsen in your already effected area but it appears things have changed and we need to look.  Yup, my left leg and my fingers are going.  And did I know that I have arthritis in my spine?  No, I didn’t and it looks like it might be getting worse?

Oh and the falling?  You may not want to hear this but maybe bilateral support?  As I was asking, can you say it in English?  My husband was saying, she’s not going for it.  Crutches!!!  Is she f’ing kidding??

And drugs?  She wants me to take the Bac more regularly.  I needed bloods for the Ampyra.  I hate needles.  Once a doctor told me he needed blood and I said needles?  He said, well I am not a vampire.  I thought this visit was going to be about other drugs.  Nope, she wants MRIs.  Luckily, with my change in insurance, they are only $75.  Last time, it took me almost two years to pay them off. Glutathione?  Complementary treatment.  I did get scrips for a new spectral leg though.

I also feel out of balance, literally and figuratively.  I thought I was finally getting to a place where I didn’t have to stress about buying “stuff”.  As I approach my milestone year, I wanted to stop settling.  I like being able to buy the Hourglass blush and highlighter.  I wanted to upgrade my car.  Material, superficial stuff I know.  And I know walking is more important.  I guess I just want to live as if this isn’t happening.

Oh, and the neurologist is not covered under my new insurance.  She wants to see me in about a month.  Look at it this way, I’ll be getting a larger tax refund next year.

So, what do I want to do about all this?  Fight back.  Restart and commit to the physical therapy, get in more walking (read lurching) and be more aggressive foodwise. Neuro says one of her patients gets good results but it’s not a good idea, just be moderate.  I am going with my plan and let’s see if I can have improvements by next time.  I am betting on me.  I hope to blog about it daily.  We’ll see.

Visiting the Doctor

Posted on by tresswann

Yes, sometimes I write about what’s going on condition-wise.  Tomorrow, I have a visit to the neurologist.  I haven’t been since July.  She likes to see me every three months.  I delayed for several reasons.  I thought I was  going to be an employee so I would have different insurance.  I was really hoping that by changing the way I eat, I would have positive change.  And frankly, I get tired and depressed hearing about the natural progression of the “disease”.  Last time, she told me I was more spiritual.  My unspoken response – “BS”

Well, tomorrow I am going back.  I am worse.  That’s another thing I don’t like, her denial that I am getting worse. It’s just natural.  One of the things we have been discussing is medication.  She has prescribed Ampyra for me but my former insurance didn’t cover it.  It costs $1300 – 1800 a month.  Now, I can get it for $60.  It works in 60% of the people.  I should be able to walk longer and faster.  I am terrified of drugs.  Also,  she can now prescribe meds that work on relapsing.  However, I have seen for some reason going that route only works for men.

In the meantime, I fell getting off subway on Thursday.  It’s getting harder and harder for me to commute.  My left leg is going.  On a positive note I should be able to get a better brace a.k.a. spectral leg for my right leg.  A new one may allow me to wear nicer shoes which will help my self – esteem.  Donna will know I hate, hate wearing shoes like the groundhog (inside reference) I don’t want to give up but struggling into work isn’t working for me. I like what I do but really don’t want to be there.  I took cabs last week except for the day I fell.  I can’t afford that.  Commutation already is hundreds a month.  I needed a cane to walk in my own tiny house this weekend.  Husband had a thought which may be valid.  I am a woman of a certain age and have been taking Estroven for years.  I forgot to buy some and have been without for a week.  Hot flashes and me don’t mix well.  Back on it so hopefully it will sort some of this out.  Also, my work stress has been through roof .  That’s a topic for another day.

Tomorrow we have a late appointment which means we see all the people who can’t even sit up being wheeled in, beyond depressing, the ghost of Christmas future.

Not optimistic.  Guess I can have a down day or so.