multiple sclerosis

Another Doctor’s Visit and MC

Posted on by tresswann

Well, I went back to the doctor for a check up after Ampyra.  I wore a dress as I had had an important meeting at work.  So peach sheath with eyelet lace top, white shawl, pearls, the spectral leg and palomino tie shoes.  She told me how good I looked and loved the shoes.  I don’t mind them.  She also assured me that I looked fine.  I hate feeling odd and spastic. In fact, she said I looked great.

My walking is improved.  We knew that already.  She was really happy. I have had no adverse reaction to the drug.  I just read someone else’s blog about drug costs.  I was originally not covered for Ampyra and my insurance blithely told me $1300 – $1500 a month.  I had to go on Affordable care.  I am covered!  But here is what’s odd.  I make more money than I ever have but drug company now is subsidizing!

Now, I have insurance so we can discuss Copaxone.  She told me which I  knew it would be off label, shots ( I don’t do needles) and it’s only been shown to be effective  in men.  Our decision?  No.

Next we discussed my scans.  Again, due to Affordable care I can afford them.  I was dreading this as my hands are going.  Right now I am not typing this at my regular, typical speed.  Forget my already bad handwriting.  There are times I can’t use my fork properly.  This annoys me as growing up I was told “don’t shovel”.  My husband has to put up my hair. And my left foot feels like a club.  The MRI says NOTHING has changed.  Now this makes no sense.  I used to walk into that office with heels.  I didn’t wear spectral leg all the time nor a cane!

Our feeling is that’s why we call it MC for my condition.  We don’t think it’s the other.  I believe this first ran amok in my system when I had no job or dental insurance and a hole in my mouth and subsequent infection.  I eventually had work done.  And recently, the bridge ( same tooth) was really loose.  I was bleeding through my teeth there.  I had a cavity filled.  The dentist was going to remove the bridge and remains of the tooth.  His words  when he went in, “It’s very mushy”  Lots and lots of decay which means poison in my body!  I have to go to the oral surgeon for this and my wisdom tooth removal.  I am supposed to do it at the same time.  More drugs in my future.  I have a meeting with the head of my company July 31 and don’t want to take chances so will schedule right after.  We think this will help me improve.  I am also going to be more aggressive in eating clean foods and the exercise.     Improvement will and can happen.

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.

Here We Go Again or Not

Posted on by tresswann

Well, tonight we were supposed to be taking the youngest and his fiancee out to dinner to celebrate their engagement.  We couldn’t go to the engagement party as it was at his ex’s and I believe I wasn’t invited.  He is not allowed to drive and the kids said they could get him a ride.  I was really looking forward to celebrating this moment in family life.  I was reflecting while I was at work how lucky I was.  I never had children of my own and I have come to love his two and believe they love me.  I never thought I would have a moment like this.  We had made reservations at a very nice restaurant.  I wore my new Calvin Klein outfit – beige and white sheath with gold accents and a subtle gold shimmer shrug.  Ok, I had on the ugly shoes.  But  I did feel nice.  My manager told me she loved the dress and I looked thin in it.  Ironically, I am down to the same weight I was when my father died and he went to jail 12 years ago.  Funny what time does to bodies.  Then, everyone was worried about how thin and drawn I looked.  He used to worry when I visited him in jail that I looked like a junkie because I was drawn.  12 years forward and I have middle age splodge at the same weight.

I have been thinking he was off again for a few weeks.  Not in a big way but just enough.  He sounded wrong this afternoon on the phone and I didn’t want to believe that he would do something on such an important night.  Swore when I got in that all was OK.   I was going along with it until I asked him for change for the restaurant tip. I had given him a twenty last Friday for a hair cut he didn’t get, plus he had some more cash in case he needed to come pick me up at work.  Tonight he had $11 dollars.  I texted son and fiancee that dinner was cancelled, cancelled the restaurant too.  In the old days, I would have gone along with it.  I texted his sister and asked for help.  Specifically I told her he had been drinking again; I believe probation will come either tonight or tomorrow and he will breath positive.  He is not allowed to drink on probation and I have an order of protection that he can’t drink when he’s with me.  Almost three years ago we had a stay away order which I didn’t want.  If he violates, that goes back into effect.  I didn’t want it then and I don’t want it now.  I am NOT a victim.  As usual, sis has not come through.  When this stuff happens, he’s not her family, he’s mine.

I have learned that it’s useless to talk to him when he’s like this but this time I have taped some of it.  I missed the truly nasty bits.  He is saying he doesn’t care and when he is straight he says that is the problem, he doesn’t care when he drinks.  He has come so far to have this slip up.  We have been having fun and doing things together.

I am in much worse condition now than when this whole mess started.  He literally helps me out of the bath at night.  He ties my shoes for me.  He helps me come home from work when it’s late or hot or I am too fatigued.  We have been making a beautiful garden.  This week he had to put my hair up for me because I was too weak.  He liked my Paint Night painting.  We laughed I am better than a first grader in art but not a fifth grader.paint night June 2015

I can’t and won’t go back to the way we used to live.  I literally had to take my pocketbook into the bathroom with me if I got up in the middle of the night.

I have taken the weekend, Friday and Monday off.  This costs me as I am a consultant and don’t get paid.  We were going to redo my home office and had bought the paint.  We bought a new TV that could be used in here too.  Obviously, it’s not going to happen.

And I am devastated and heartbroken.  Not eating, so will go below my “junkie” weight.  Last time he was arrested, I lost 6 pounds in two days.  Guess I’ll do what I usually do to medicate myself – read novels, write and make things but no bubble baths.  I hate being resilient but guess it’s what saves me all the time.

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.

Zombies, Dreams and Other Bumps in the Road

Posted on by tresswann

Disclaimer:  Life isn’t always about the disease or the condition.  When this journey started, I said I would not be confined or defined.  Well,  I started to let that happen.  I am fighting my way out of it.  I really dislike fighting.  I don’t like conflict.

Fact about me:  I am an avid, voracious and catholic reader.  However,  I don’t really do the supernatural or horror. Mysteries?  Yes.  Literature – smiles.

Disclosure:  My area of concentration at college was the synchretization of African religious beliefs in the colonial world.  I know, I know what was I thinking.  It is seriously interesting to me .  And that means I studied obeah, santeria, macumba, voudon.  But so not into zombies and if you really look at voodoo that’s not what it’s really about.

About conflict:  Work has been in turmoil for awhile.   I discovered earlier this year that my group head does not believe I am qualified to be a trainer!  It’s my job and I have been doing it with this organization for 15 years   11 years ago this month the training department in North America was disbanded as it was considered an expense not an investment and I was let go.  I was hired as a corporate training manager for a major US retail chain.  6 months later, I was asked back to finish some work.  So I did both jobs.  When the retailer went into bankruptcy, they were thrilled and I started working more hours, lots and lots.  Even now I average over 40 (billable) hours a week, have trained literally hundreds of people and created numerous successful programs.  So d’uh?  When I came back simplistically because of the expense thing they couldn’t call me training.  There are also corporate cultural and political issues so I do not identify there as a trainer because I seriously love what I do and yes, it pays well.  Also,  I work in I.T.  And am not technical.  I am the translator.  For those of you of a certain age,  I am the Mikey likes it of the department – if I understand and can do it, anyone can!  She says I told her I wasn’t a trainer.  Uh,  I made a  comment on 2nd day she was here!  In fact, one year they called me BUST – business user services/ testing!  My immediate manager and my former manager are moving to the other side of the business.  I was told that they didn’t know who my supervisor was going to be or where I would be located.  Unsettling.  And you know stress goes right to my legs and it’s not good.

Ok stage has been set.

Sunday night I dreamt that this woman (group head)  was a zombie!  She was on the ground disabled.  I was there and someone had given me a HUGE cartoon-like Chinese cleaver.  In my real life I have problems literally killing flies.  So,  I am holding this cleaver and there are people standing around me telling me I need to cut her head off.  It’s easy, the cleaver is big enough, it will be a clean cut.  I hesitate but they tell me I need to and can.  I visualize a dressed chicken. At the last minute  I smash her face.  There’s blood all over her face, rivers of it.  Then she starts to get up and I wake up screaming.

In the real world, I don’t talk to her or interact with her.  And I don’t do blood.

Cut to next day,  I go in and get a note from my former manager, there is a training job open.  Oh, I am not an employee. I am freaking and bouncing off the walls.  Tell husband to be ready and get me.  I literally stumble in.

For now, all is good.  It may even work out.  And I am walking really well.  I have had some great meetings and interactions.  It will be alright.  I am beginning to feel like me, the old confident, creative me!

But what did that dream mean?  Why did I have it then?

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,

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.