June Warrior Check In

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

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.