Good and Bad

February 2, 2011

So I have been feeling pretty good lately.  I’m not running any races, well I’m not running.  I have enough daily energy to do what needs to get done.  Essentially, I operate on a low level.  That  is good.  I am happy with that.  I can make a little life for myself.

The bad. Well, I’ve never been satisfied with slowing down or following rules.  Most of the time this rebellious spirit serves me well.  But, when it comes to conserving my energy and keeping my energy at a good level the rebel in me is not serving me well.

Rebellious Spirit, Spirit of the Soul, does help with overcoming the depression, the “woe is me” feeling that a chronic illness brings. The spirit enables you to live happily, find a way to make your life, see the joy in life despite or maybe even because of your troubles.

When this disease, when atypical ms progresses again I will be facing another round of chemo, cytoxan.  If you have read any this blog you know that I have a love hate relationship with cytoxan.  Chemo really helped me, but I was sick; sick through the process.  I want to keep myself as good, as healthy as I can.

The rebel me needs to ssllooww down if that is going to happen.  In analyzing why I don’t slow down, I’ve come up the answer.  I think.  I want to live life, experience all life has to offer.  I don’t want to follow the speed limit and park between the lines when I die.  I want drive 100 mph taking the backroads finally careening into a skid as I stop at the Pearly Gates jumping out of my convertible  tossing St. Peter my keys.  You get the idea.

The spirit is willing but the body isn’t able.  So I hope my spirit finds creative ways to live life without punishing my atypical ms ridden body.

We’ll see how it goes.


2 Responses to “Good and Bad”

  1. Kathie Lagerblad Says:

    My daughter has been in and out of the Hosp. Since Aug.2012. Severe upper thigh pain, burning sensation. She gets a little better then it hits again. At her worst shes unable to walk at all. She does have epilepsy and has been on Depakote since 1992. After 3 neurologists she went back to one she trusts who is researching her tests, history, etc. One distinctive thing clearly present is the degeneration of the myelin sheath. I’m thinking MS even though they ruled that out in the Hosp. but everything I read about her symptoms and the myelin sheath issue justs pops MS. Her neuro doc hasn’t said that yet. If he finds no answers could you recommend someone? Sounds like you went through this all and your story is scarily like my daughter’s experience so far, bad docs and wronf diagnosis thatball seem to lead nowherel. We live in north Texas but I would take her th the Mayo clinic if I thought it would help!

    Thank you for your story, Cindy. It’s the first one I’ve read that gives me a glimpse into something I am clueless about but have been trying to research as much as possible. I’m lost but with information from people like you it truly helps me take some mystery out of this mysterious illness (at one point the Hosp. Docs all said it was some unknown virus working its way through her system…a true catch all for “don’t know” but they’re too full of themselves to admit it).
    Bless you for sharing your experiences!
    Kathie Lagerblad

  2. Tom Terry Says:


    I’m going for the lumbar puncture this Tuesday 8/30/11 for the Baclofen Pump, while doing my usual web surfing I came across your Blog.

    Information on the pump was motivating however when your blogs stopped in Feb of 2011 I was wondering what happen?


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