balance

Another Blow

Posted on by tresswann

I have had a relatively crappy week.  I didn’t get the job.  That’s alright.  I know things happen for a reason.  I have not gotten many jobs over the years that I wanted and was qualified for and it’s all worked out.  There was one in California where they wanted someone who understood multiculturism.  I am multi- cultural.  The owner’s wife died 4 weeks later and the business closed.  Same with a handbag manufacturer – son died within the year, business closed.  JC Penney moved to Texas.  Two of my most sobering ones, early on I didn’t get a job at Cantor Fitzgerald and in 2000 I didn’t get another job at the WTC.  Recruiters called me for months with that perfect opportunity.  I always get to work early. I would not have made it.  So, I do know.  This job though represented a chance to have a different kind of life.  No  more 4:15 a.m. out the door before 5:30 a.m. Dental insurance!  I have just found out I need several thousand dollars worth of dental work.   A whole change in lifestyle.  I could taste it. Plus,  lately I haven’t been treated well on the job.  Who hasn’t had resignation fantasies?  I wanted my company to regret losing me and understand the full scope of what I do.

On the up side, I feel empowered to keep on looking.  I now have a clearer idea of what I want and need.

Fridays I work from home because of my condition.  Every other Friday I attend a team meeting.  I am not really part of the team but the org chart put me there.  It’s a team of developers.  I work in IT but am not technical.  I bill by the hour so on Fridays, it’s easy money for half an hour to an hour.  Most of the time I do not understand what they are saying.  It’s a foreign language and I have a facility for languages.  What is kinda cool is the team is in NY, NJ, London and Ireland.  I video/conference in from LI and one of the team comes in through PA.  Oh yes. I view the video but block them viewing me most of the time.  When I am in the office,  I tend to turn it off too.  One manager recently asked me, “How come I always see your coffee mug but not you?”  I digress.  This team is primarily male.  There is 1 woman sometimes in NY.  She’s a recent add on.  There are one or two in Ireland.  Think of this as the sniggering little boys club.  They are always talking behind people’s backs and saying snide things.  I get a notice Friday morning  that the meeting has been pushed back 15 minutes.  I enter a minute early and it is very much in progress.  Oh,  you joined.  We made an announcement,  R (my manager and for years my champion, but not lately) is going over to the other side of the business.  We don’t know who you will be reporting to.  The developers will be moving to another building but we don’t think you will be going with them”. I feel like all the wind has been knocked out of me.   I have worked with this woman for 15 years!  She could have told me herself but that would have been human!  I have a friend there who always says “Ah you work with the F’ing computer people”.  I have recently been told not only by this manager but by my other former manager that the head of the department has badmouthed me and doesn’t understand why she should be paying me.   My feeling is that I am about to be let go.  My agent says my contract is meaningless.  They have broken them before with him.  I do reach out to her in the afternoon and she tells me no decision has been made about where I am going; she is open to suggestions.    She has wanted to put me in HR for almost a year.  I have bad, bad history with HR.  They have made changes but for those of you who know me…. I work in organized chaos.  The new HR is OCD, seriously.  And although I have worked corporately forever, they are much too corporate and clique-y for me.

I need to keep my stress levels down.  Stress goes directly into my legs.  This is not helping.  I had started yoga every night but am not sure how much it will help.  Of course, I am going to fight but fighting takes enormous energy.  Yes, of course I have a case.  I have been a consultant there for 11 years after they eliminated my job of 4 years and brought me back to do the same thing without benefits!  I am a woman, over 40, interracial and disabled.  I just want to continue to do what I do.  I enjoy it most of the time. Yes,   I do want to make changes.  I have always had a deep faith in the Universe so I have to look at this in the light that the Universe is reaching out to me.

I am medicating, by that I mean I went out and bought a seriously pretty dress and will pretend that I am not wearing ugly shoes.  I have chocolate, bubble bath and novels.   My husband is prepping the grounds and we have been to three nurseries and bought tons of flowers.  It will be soothing.

I know it’s life but I am so tired of struggling and fighting.

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.

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.

May Warrior Check In

Posted on by tresswann

Back for MAY :

How do I feel today – Nice day.  Attended a tea.  I actually did a table.  I was all tizzed about it but think it went well.  However, mixed feelings.  This is my fourth one.  I walked in first time four years ago  in a dress, today with a cane and pants.  But I am walking better than I have due to the drug.

What did you do for yourself today?

See above.  I went to a tea, very girly.  My husband was wonderful and helped set up and breakdown.  There’s a jewelry boutique so I got to shop!  And then went to Odd Job afterwards for this and that.  I didn’t work.  It’s a real break.

What did I eat today and how did it make me feel – BAD.  It was tea!  I did do a smoothy before I went but scones, salmon tea sandwiches, chocolate.  Then Chinese food.  I have been seriously sliding and need to recommit to proper eating.  I need to max the opportunity the Ampyra has given me.

Did I exercise? What did I do? How did it feel – Still not going to the gym or Zumba. But I am walking more.  I will get to gym.  This was the least I have walked all week.

For whom or what are you grateful? What matters most in life?   Grateful for friends and the possibilities of new ones.  Grateful for the people I am meeting through the blog.  Ampyra.  New possibilities.

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.  Uh, maybe some sort of sharing

How long have I been treated with conventional medicine Ampyra,  two weeks.  And it is working.  I was able to walk longer and stronger.

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

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.  Trying to tone it down.

What can I do tomorrow to make it better than today?   Start over.  It’s a new month. Have a different day.  And yes, I am thinking about things other than disease and death. I am thinking about art and new jobs and possibilities, flowers and spring.

Until next month.

Ampyra Plus

Posted on by tresswann

Well, I started the Ampyra a week ago.  I had fought against taking drugs for ages.  When I finally gave in,  my insurance wouldn’t pay for it.  New insurance pays.  And it’s reasonable.  So, I started it last Saturday.  Yes,   I was/am worried about side effects.  Uh, seizure is one?  Much trepidation.  So far, so good,  no side effects.  And I am walking better!  It’s amazing.  Thursday, I walked 11,000 steps and was not stumbling and half dead, that night or the next day!  I can’t believe it.  I am fearfully optimistic.  On the one hand, I have read the literature.  This is not a cure.  I can continue to deteriorate.  I do not want to think about this.  Here’s where I am going.  I am taking this as a second chance.  I can go back to Zumba.  I need to find my way back to the gym and build those muscles.

This morning,  I went for MRIs.  I have been getting them from a research study.  It was de-funded and the doctor pointed out that it had been two years and since my left side seemed to be having trouble….  This time the insurance is good.  I didn’t want to go.  What is the point?  I know things have changed.  There’s nothing they can do, so why?  Of course, I had to take the spectral leg off for the MRI and the tech wanted to wheel me into to the room in a wheelchair.  NOOOOO!  I stumbled and gimped on it.  Puhleez!

And I am on a roll,  yesterday I went to get a new spectral leg.  I was shown one that had two thin metal strips in the back but my ankle is too wobbly.  However, there is a graphite one with a thinner back and slimmer sole.  I may be able to wear  nicer shoes. I hate, hate looking disabled.  I am like a newscaster behind a desk – everything looks good until I stand and walk!  I am very vain and ugly shoes impact me.  And I don’t buy what some of my friends tell me about being older and not wearing heels.  Okay, I wouldn’t want to wear stilettos anyway but I see no reason why I can’t with practice and determination get back to kitten heels.   Let’s not even consider crutches or wheelchairs.

My goal is to go back to wearing spectral leg only to and from work and to ditch the cane.  Build those muscles.  So, I need to amp the clean eating.  I am on my way.

Aftermath of the Doctor’s Visit

Posted on by tresswann

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.