The latest

Another day off-- thank goodness. I have been super-busy with work and preparing for my next aerial show this weekend.

I went and saw my neurologist last week and she said I was doing "great" and that I don't need to see her again until next year. I also don't need to get another MRI until June so things on the health front are still looking up.

I continue to balance my busy schedule with plenty of rest and a prayer I don't catch the latest bug :) Honestly, some days I feel better than others. I still tire easily, but I can feel my stamina building. All my aerial training is making me increasingly strong and flexible.

Yesterday one of my yoga students (a social work student)asked to interview me about the mind-body connection. I spent some time thinking about it, and then I told her the story of my diagnosis and how that period in my life forever changed my relationship with my body and my overall life view. I have said it here before, but every day is a gift. I really understand the importance of being present, enjoying the moment, and seizing opportunities when I can seize them. I also told her that I have found that when my mind is in a good place (I feel happy,) my health also seems to be better. When I am living with joy, I can do more both physically and mentally. If that does not give evidence of the mind-body connection, I'm not sure what does. My awareness of my mortality, of the fleetingness of health and physical ability, makes my life richer. If I thought I had forever to do these things, I think they might mean less, knowing that I need to make the most of the moment, makes the moment more precious.

Living Fiercely

I still vividly remember a time during the first year after I was diagnosed where life was colorless-- all just a bunch of "what ifs" and struggle to survive. I also remember talking one day with my then husband, and realizing that I no longer had any real dreams or desires. Everything I did was somehow based in fear. I worked so I could pay my bills. I rested so I could be well enough to work, and I fought tooth and nail just to keep what I had--continually wondering if it was even worth the cost to my physical and mental health. He asked me about my bucket list and I was painfully aware that I didn't even have one.

Fast forward three years from that moment... I find myself in an entirely different state of mind. I work to live, but i don't live to work. I still work hard but I am prioritizing my activities. It can be all work all the time so now I go to aerial dance and fantasize about joining the circus. I have stopped saying no to every invitation and every activity outside of my job. I am about to turn 35 and I have a bucket list that is alive and well. My new priority, having fun doing things I love.

Last night I crossed a new item off my bucket list when I performed my first aerial dance routine. When I came home and looked at the photos, I told my roommate, "I look fierce." I love feeling like a bad ass :) If MS has taught me nothing else, "Carpe Diem."

Balancing Act

The school year has started with a bang (I'm a teacher) and this is definitely busy season. Right now at 6:00 am on a Sunday, I'm stealing a guilty minute away from the work to right a quick update.

This time of year is always a health challenge. I have yet to get through it without a relapse but this year, so far, so good (knock on wood). As always, my secret weapon is a balance of rest and work. Sleep is my trusty side-kick-- we try to spend 10-14 quality hours together every day. Sleep used to be something I squeezed in around all the activity, now I squeeze the activity in around all the sleep. This year's plan involves a little nap every day and a good 3-4 hour chunk on Saturdays.

The balancing challenge here is fitting in the fun stuff. I haven't made any trash art in a few weeks but I have gotten out to a few aerial dance classes. I have also still been teaching my full yoga schedule but I gave up my desk shift in favor of more rest time. Now I can be home for the night by no later than 6:30 on any night. When do I go to bed you ask? 7:30-- but I'm still not old (lol). Can an old person still balance on just their arms?

Hangin' out

What a fun summer-- Trash art and aerial dance!

What I have been up to

So far it has been a fun and busy summer. In June I attended two different trainings. The first was a "writer's workshop" where along with other teachers, I learned more about teaching writing. The second workshop was put on by EL Achieve, an organization that trains ELA (English language acquisition) teachers like myself. While I was there, I trained to lead their workshops for other teachers in the future. It was very empowering to be treated as a teacher leader again.

July has been a mix of action and down time. I ended June and started July with a week at the Naropa summer Writing Program in Boulder. I wrote my "Legacy" poem while I was there. I also created a bunch of other new work.

At the end of June I worked a kids birthday party with my roommate where she ballooned and I taught Little Animals yoga and face painted. We teamed up again on July 4th for more balloons and face painting. This (face painting) is a new passion for me. I am learning as I go.

Lately I have been resting a lot, recovering from all my adventures, getting organized and experimenting with the construction of "trash art". This is shaping up to be an excellent summer.

Click on each of the links to see my fun in action!

Legacy

Legacy

I had a nightmare last night.
In the corner of a dump
Hundreds of plastic laundry containers--
Even in the dream state, I recognize them.
Their contents spilled on the ground,
A graveyard of glass syringes.

That is what I left behind?
Piles of plastic and glass—

Glatirimar Acetate
During a double-blind, placebo-controlled pivotal trial, COPAXONE®reduced relapses by 29% vs placebo over 2 years in patients with RRMS (Relapsing-Remitting Multiple Sclerosis) diagnosed using Poser criteria.6

No note to mention this drug only helps some people,
No guarantees.
Try Rebif, Avonex, Betaseron or Copaxone
Try hope…

No note to mention
Some never find a drug that helps--
There is no cure for Multiple Sclerosis.

Teva pharmaceuticals packages hope in blue, rectangular boxes.
30, prefilled glass syringes,
1mL Glatiramer Acetate.
Individually sheathed in smooth plastic casing.
Stacked in rows of 5
Soldiers battling disease?
Nestled beside 30 alcohol swabs
Individually sealed.

Cremate my body.
Only ashes remain.
My legacy—
Just comb through my trash.

For Readers and Writers

When I started this blog I promised myself and my readers to write with sincerity and honesty, even if the feelings my writing evoked were not always comfortable and pleasant. I made this promise with the idea that while each person's experience is unique, someone might find a piece of themselves in what I had to say. I see this as a rational for publishing personal observations, if only in blog form.

Today I was gratified to discover a reflection of my ideas in an essay by Jane Tompkins called "Me and My Shadow." While Tompkins danced around this issue in her own way, I still found several mirrors to my own thinking in her words. She called the language of "Western epistemology" a male language. Perhaps that is true, but I tend to just look at it as the language in which we are taught to write, the rhetorical style of writing used in our education system. There is nothing wrong with this approach, but it is far from personal. If we look for ourselves in such writing, we are unlikely to find much of genuine human experience. That can only be found in unfettered, brutally honest, naked and personal writing. That is what I want my blog to be.

It can be hard to write so honestly. Tompkins mentions how the inner critic quickly arises for her when she writes this way. It's not comfortable. There is no road map for how it "should" sound. I can relate. There are many times I have written half a page on my blog, only to delete it before publication because I felt it didn't "sound good." Even now, I find myself putting this entry through the editing lens of my own educational background, but I long to write from my heart, my experiences and to be comfortable with what comes out.

I go through obsessive stages of seeking my "true self", but I suspect that self is always there. It is the inner critic, the ego, that keeps me from comfort with who I really am. Everything I say, everything I do filters through how I believe others will perceive it. It is only when I do things without such a filter, that I can say I am truly being me.

Walk MS

Had a hot, but super-fun walk with the peeps from my support group and some of their friends. Go team "Walk by ME!"

Vacation

Spring Break is finally here and I am about to head out of town for a week of adventure. I am going to Baltimore to visit my best friend and I am also going to catch up with some fellow MS bloggers.

Then we will be heading to Philly to see my brother and my cousin. We plan to go to D.C. on Friday as well.

During my vacation, I plan to relax, party (a little), eat, shop and spend time with my BFF and some other close friend.

I am getting excited. More details to follow soon...

My 4 Words on Living with MS

Enjoy now, Live fully!

MS Awareness Week: Share Videos with MS Community

I was asked to post this (DR):



In the spirit of raising awareness for MS during MS Awareness Week, I wanted to share with you a program MS LifeLines is launching on Monday: Words 4 MS.


Words 4 MS has been created to empower and inspire people in the MS community by encouraging them to share their stories. The program will share individual stories from people living with MS, or people who know someone impacted by MS through selected videos on mslifelines.com. Video submissions should follow the theme of Words 4 MS and include four words to describe a personal achievement (examples: Still Full of Hope, My Mom, My Hero).



People can submit their video and access the full program guidelines and submission criteria at MSLifeLines.com/Words4MS. (Website will be live on Monday, 3/14) Video submissions will be accepted from March 14th through July 13th.



We are hoping you could share this program with your readers via your blog and/or email and continue to raise awareness for this chronic disease. We have included below a brief email you may use to help us get the word out about Words 4 MS, if you would like.



Email to your readers:

Will Never Stop Fighting

Still Full Of Hope

My Mom, My Hero



These are just a few examples of how to tell a story in four words about your personal experience with MS. Are there four inspiring, thought-provoking words that say how you feel, inspire you, or remind you of someone in your life who has helped you through your MS journey?



If so, MS LifeLines is asking you to share your story through video!



Through Words 4 MS, people living with MS or who have a loved one living with MS– like you – will be able to share their individual stories through video that might be revealed on www.mslifelines.com and other possible media outlets. We encourage you to submit a video that showcases how your life has been impacted by MS. Video submissions should follow the theme of Words 4 MS and include your personal, 10-second video depiction of how MS has impacted your lives using four words that describe this story (examples: Still Full of Hope, My Mom, My Hero).



We are asking you to help demonstrate how many people are touched by MS while also helping to raise awareness of this condition by sharing your four words today! Please visit www.mslifelines.com for the official guidelines and submission criteria.



MS LifeLines is an educational support service for people living with MS and their families. programs LifeLines is sponsored by EMD Serono, Inc. and Pfizer Inc.

Looking back to Look forward

Lately I have been feeling some creative inspiration again and I have been looking back at old poetry and journals I wrote at age 23. I found a couple of interesting things. Many things are the same and many are different. Many of the images in my writing are still the same. I still love to be dramatic, and I still am in love with the idea of love :)

I also see the way life has changed. Every day is not a drama. The hard days are not as hard. One of the benefits of age is that it lends perspective. There are still hard days but I guess now I know that the good also comes with the bad. While one day may be a trial, the pain passes quickly and great moments can follow right behind tough ones. Since this blog is "Living with MS!" let me state that I have found these observations to hold true after living almost three years with this diagnoses.

One observation I can share with the newly diagnosed (with relapsing remitting) is that relapses do have an end. Sometimes when you think that some function is irrecoverable, it comes back. It is also easy to get lost in the idea that it's all downhill from the time of diagnoses. Not true: the course of this disease is different for everyone.

My first year was the hardest physically and mentally. At age 34, I am in the best physical condition I have been in since about age 16. I practice yoga every day and physically, I can run circles around my 16 year old students. I have enough perspective on the disease at this point to know that this could also change at any time, but this knowledge is also a gift. When you truly face your mortality and realize that things could change at any time, it makes you value each day of health even more.

Joy is often about valuing what you have, not morning what you have lost or could lose.

A long overdue ramble

This blog used to be home to me. I poured out any and everything, no holds barred. Then I got divorced and some things just did not seem appropriate or necessary for public consumption, but now it seems like enough time has passed, and I feel like rambling a bit.

It has also been a really long time since I found an afternoon to myself where I didn't need to work or just rest because I was totally exhausted. Today it is beautiful outside and I smell spring on the horizon. I came home, stretched, and actually went for a run. I ran a whole mile without stopping and I enjoyed it.

It is only 4:45, still light out and I have already finished working and have the evening before me. This feels really good.

There has been a lot of change in my life lately and I think many opportunities for growth. Come Friday, I will finally have sold my house. I have moved into a 1/2 duplex with my friend, my two cats and her three bunnies. The place is coming together and we are really happy here in our new neighborhood.

I also recently ended a relationship and find myself totally single again for the first time in over ten years. It's strange, but I also welcome the possibilities. I am enjoying making my own plans and not always running them through a mental filter regarding how they might effect someone else. Today I am asking myself, "If I could design the perfect (LOL) mate, what would they be like?



Design a Date by Denver Refashionista

SWF seeks friend, companion and lover for:
yoga, walks, intellectual stimulation, a dose of honesty, great chemistry, Saturday night date, coffee, dinner, travel, a few nights out, fun, humor...

Honestly, I'm really thinking about what is important to me in a companion. I know that they should be attractive to me but they don't have to be attractive in a conventional way. I know I want someone to laugh with. I want a great physical, spiritual and mental connection. I must have someone who accepts me for me, rather than trying to make me into something else. I want someone who is not afraid of the MS and the huge amounts of sleep I crave. I want someone who has their own passions, who is comfortable being alone but also likes to be together without being needy. I would like to have someone who is physically fit and active but who is also ok with chilling. I want someone who is intelligent and well-educated. I would like them to be between 27 and 50. I want them to have their own career and income. As my sister would say, "I want them to have their shit together." I also want them to be a grown up. I do not want to raise anyone up as my mate. I don't care what gender they are as long as we have chemistry. I still don't know for certain whether I want kids, so they should be willing to entertain the possibility, but not be set one way or another.

Does this nearly perfect individual exist? If you are this person, please send me your resume, a photo and a copy of your most recent pay stub (LOL)

Inspirational video

One of my readers just sent me this video about a man my age diagnosed with MS. While his story does not seem all that extraordinary to me, (it being a lot like many of ours) I really like his outlook: the idea that each day is precious and must be lived to its fullest.

Check it out

http://byutv.org/watch/2151-203