Tuesday, June 14, 2011

Praying to the MS gods

Praying to the ms gods. "Lisa, I don't know how you do everything you do?" says several friends online. An honest answer is that I'm not sure how to juggle everything which is going on right now either. Besides maintaining this blog and the Carnival of MS Bloggers, I do write several posts/articles for healthcentral.com each month.

Part of my unspecified responsibilities for Healthcentral include responding to members in the community and helping those who just pop in for a question or two. Of course I do not do this alone, but sometimes when everybody is busy, I do carry the hefty weight of such activity on the MS website. I feel bad when days go by and I haven't checked in. But at some point priorities must be made.

One of those priorities this weekend was recovering from a quick trip to Chicago. Seriously this was a very quick trip in that I was gone for a total of 33 hours. Twelve of those hours were spent either in a car, on a plane, or in an airport. Yes, I was at my destination for less than 24 hours. That was crazy quick!

I ended up sleeping the day away on Sunday. I think I finally got hungry enough to come downstairs for food around 4pm or later. My body said, "We're in a holding pattern today; you should just sit back down and relax."

At this very moment, I am on the train heading north to NYC. This will also be a quick trip, but a somewhat less stressful one. I'm so excited that tonight I will get to meet up with a cousin whom I haven't seen in probably 20 years or more. I'll need to get on a different train to go another hour north of the city, but it will be totally worth it. Can't wait.

The tomorrow I will be meeting with folks from the NMSS to advise on some online activities they have in the works. I first met with NMSS employees two years ago as part of an MS Community Advisory Panel. At that time, I was the only MS patient involved. This time I will be joined by others. I will be excited to get an update on the success of some strategies which they implemented since our last meeting.

During all of this traveling, networking, advising, and advocating, I have been also praying. Praying to the MS gods that they be kind to me. I need my legs to get around, while I did use the cane in the Chicago airport. I need my mental faculties so that I can contribute at a high level. I need to be able to see, well I just need to see period.

As I've been trying to stay on top of the exhaustion, I have noticed that the body is functioning at a slightly diminished capacity. My right arm has started to subtly shake, but only to where I know that it's happening. My face is numb and fuzzy. My brain has been in need of wake-promoting assistance. Overall, though, I'm doing remarkably well.

The MS gods are being kind. It's hard for me to know for sure how to attribute this wellness. It could be the treatment change I made last year. It could be the natural course of my disease (however, in looking back I was definitely sliding downhill before the drug switch). No matter the cause, I am grateful.

Grateful to be healthy. Grateful to be ambulatory. Grateful to have the support and concern of so many people who truly "get it". Thanks to all of you, and when I figure out how in the world I'm doing all that I'm doing, I'll let you know.


  1. This reminds me of a "discussion" I had with a neurologist (not an MS specialist.) I said that I could tell when an episode was coming and he said that was impossible. After much back and forth we agreed to disagree. I still believe there are definite warning signs...if I would only learn to listen to them better!

  2. Yes please, please, tell me how you do it when you figure it out!

    I usually know when I am overdoing it then I pick and choose what is important and what is not. In other words if I wanna do it I usually do if I can. Not high on my liking it list I choose not to do it. Selfish maybe but energy conserving.


  3. Those subtle hints which your body is sending you probably mean that you need a rest. I know the feeling of being busy, busy, busy, but I also recognize the price I sometimes pay for overdoing. Do listen and get some r & r!

  4. Lisa,

    I am so grateful for all the work you do for the MS community. Muff is right, though, the hints are important alerts. I am sure you have your own tested methods for dealing with a stressful situation. I won't suggest another,only that you please employ whatever methods you find useful and do so soon.


  5. Lisa,
    As Judy said- What you do for the MS community is wonderful and truly appreciated.
    Sending you lots of positive thoughts!

  6. I agree with the above comments! I also want you to know how we appreciate what you do. Be careful!