MS Can Take a Hike!

Michael,

You are so kind and generous with your words.  You make me smile!!  The concept of builders, sub-contractors, and licenses cracked me up.

It makes me happy to see folks with MS be so engaged within the community and empowered in taking charge of their healthcare needs.  A community does have and may need its leaders, but to be healthy its more than just that.

I think of the various roles and inter-dynamics of a french horn section in a symphony orchestra.  There is the Principal horn player who has the major of the solos.  He/she sets the tone of the section (that is if it's a good section).  The 2nd, 3rd, and 4th horn players provide an equal, yet supportive, function within the section.  Each person has their own part and role to play.  If one slacks off the entire section is diminished.

Oftentimes, the 3rd horn player is the leader within in the music depending upon how it was composed.  However, even 4th horn players get solos and kudos (see Beethoven's 9th Symphony for an example). 

I always enjoyed playing 2nd horn.  It is probably the most important part for a few reasons.  The range required is wider than that of any other part and the technical challenges are more demanding.  The 2nd horn player must be perfectly intune and match the style of the principal player, otherwise the section cannot play as one.  It is generally more difficult to make your own playing match others around you without allowing ego to enter and interfere.  The 2nd horn player can make or break the section single-handedly. 

Then there's the Assistant principal horn player.  Often a thankless job.  You typically play many of the loud tutti sections and must then follow the lead of the 3rd horn player who is 3 persons to your right (hard to hear).  You often sit for very long stretches of time, not playing, so as to get cold "chops" which are less sensitive to control.  Basically, your sole duty is to take the load off of the Principal player so that he/she can shine in the exposed solo moments.  You do a lot of grunt work, but get no recognition except that which is given by the players sitting closest to you.

Ok, what was I talking about?

Leaders and licensing.  I think that you definitely have your licensed and are certified in MS community building and leadership.  Thank you so much for your supportive words and generous nature.

Whether we are e-patients, patients, suvivors, whatever....we are most importantly COMMUNITY!!

What a wonderful (albeit lengthy) analogy. I would be appy to play 'second fiddle' to you anytime. ( :>

Tara,

Thank you so much!!  I love that you use your blog to help spread awareness about the disease and information for other MSers to find in their searches.  I really had no idea how warm the MS blogging community was until I barged in and announced myself.  A few folks were suspicious of my motives, but I really just wanted to create something (with the Carnival) which was our own and similar to what other medical-blogging folks had going on.  I think that it's worked out ok so far.  ;)

Yeah!  Me too!!  Too!

The validation is wonderful; and the commonalities we have with our own uniquenesses is reassuring.  I love this quote: "You're not crazy. Or, if you are, at least you're not alone."

That alone says so much about our experiences in living with this disease.  I often return to the thought that I would never have met another person (in real life) who has both RA and MS without being part of this online community.  I feel much less alone knowing that I'm not the only one.

Although I see myself as helping others foremost, I sometimes get a little help from my friends too. 

Michael's words are powerful and have struck me at how important my relationship with others online has become.  I participate because I want to, not because anybody is making me, nor because it is a full-time job (although compensation is always nice).

With the diagnosis of transverse myelitis (before the official MS dx) and a history of optic neuritis, we took a closer look at Devic's.  The obvious reason (given by the neurologist) that this was more unlikely was the time between the major attacks.  However, I did certainly have troubles which could have been the result of cervical lesions in the year of the blinding case of optic neuritis.  I simply blamed my horrible experience with oral prednisone on any problems I had with walking, balance, numbness, etc for at least six months.  (Not having insurance at the time was one reason I stuck my head in the sand and thanked God for a dx of a one-time single event which didn't mean anything beyond itself...at the time).

Maris,

I have also developed some truly great friendships within the online MS community.  I've only met two of these folks in person.  One has turned out to be a good friendship and someone I've even called when just wanting to talk to someone.  And another which has turned out to be about as opposite as you can imagine a friendship might be (not so friendly afterall).

I think that we can understand each other so much better than our medical professionals.  When you say that you're sick of it all, I understand although I haven't had the exact same experiences.

So here's to saying "sick of it all" and getting on with a beautiful day which I hope you've had. 

Lisa,

This could be the start of a beautiful friendship.

Maris