Finding Answers in the Community: How MS Patients Can Help Each Other

  • "Ain’t Life Grand?"  These are words I spoke (wrote) last night in a thread on Facebook between myself, my brother and our cousin.  The three of us were having a spirited conversation regarding healthcare, capitalism, markets, reform, government involvement, costs of healthcare, consumer choice, etc......

     

    For the purpose of this post, it doesn’t matter what the specifics were in our conversation; the significance lies in that we were communicating.  I haven’t seen my cousin since the death of my grandmother six years ago and haven’t been able to visit my brother and his family in almost two years.  But it’s very nice that he and I can connect online as we wish.

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    Some of you may have come to read these words from Facebook where I often provide links.  Some of you may have come directly from Brass and Ivory.  Others of you may have come by way of Twitter.  Or you might be subscribed to my posts directly or have stumbled across MultipleSclerosisCentral.com by way of a Google search.

     

    By the way, how have you come here?  How did you originally find MS Central?

     

    The beauty of social networks is that we can find each other on various websites and communicate in a manner which feels most comfortable.  Two years ago I was barely on Facebook and only “friends” with people I knew in face-to-face “real” life.  Now there are friends all over the globe who I know from various aspects of my life: musicians, schoolmates, colleagues, students, parents of students, family members, bloggers, medical professionals, and many people living with multiple sclerosis and/or rheumatoid arthritis.

     

    For an extremely private and shy person, I have learned to enjoy and thrive upon the connectivity.  I enjoy the community, the people, the support, the information, the camaraderie.  Very much the same reasons I enjoy the community we have here and the community of bloggers from where I came originally to HealthCentral.

     

    As you may have noticed, this Sharepost is not one full of multiple sclerosis information or clever stories.  Just a simple brain-dump.  (That’s what I like to call it when I sit down to talk through my fingers.)  I don’t really view myself as a writer per-se but as a person who shares information and support.  I’m a musician.  I’m a friend.  I’m a sister, a daughter, an aunt, a girlfriend, a teacher, a mentor, a counsellor, a blogger, a patient advocate, and many more things.

     

    If you were to give the freelance writers here a new label, what would it be?  Would you replace the term “Expert” with something else?  If so, what?

     

    I like to learn about others and look at profiles to get a sense of people.  I also look at previously written posts and comments.  Here’s something which I’m sure you do not know.  As an “expert” at HealthCentral, my Home page does not list all of the comments to Shareposts written by other people; only those left on my own pieces.  To know what others are saying elsewhere on the site, I have to go looking for it.  If I have missed you, I apologize.

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    What makes you tick?  What are your hope and fears?  Your concerns and solutions?  Your joys and heartbreaks?  Your viewpoint on issues?

     

    “Ain’t Life Grand?”  Those words were actually spoken in a bit of sarcasm after having detailed the costs of medical care I receive in a typical year.  I mentioned that my doctors and I might try one more drug in an attempt to dampen the MS activity of the past two years and also to help with the RA flares.  The drug in question happens to be one which is approved for use in rheumatoid arthritis, but is also in trials for patents with relapsing forms of MS.  It was found not to be effective for progressive forms of the disease.  I see my rheumatologist on Thursday to get the final go-ahead.  My out-of-pocket cost per infusion is likely to be at least $2000, not an inexpensive decision.

     

    Thinking of community again.  What are the features you like to see in a community such as ours?  The administrators at HealthCentral are always open to feedback from users and are receptive to making your experience a better one.

     

    Would you like more MS news?  Perhaps press releases and articles related to developments in research.  Would you like to see more MS organizations participating here?  Perhaps sharing information about what each organization has to offer.  Are there particular types of voices which you feel are not represented or being heard?

     

    There are some things which I have wished to see at MS Central for some time and hope will be incorporated soon.  Since the MS site was launched just about 2 years ago, there have been many changes.  Writers come and go; producers also come and go.  Members fade in and out as their needs dictate while the community continues to grow.

     

    What would you like to see here at MS Central?  What type of posts do you find most helpful on a personal level?  Would you like to have video blogs in addition to written blogs? Are there areas of the website which you use more frequently?  Are there areas where you never go?

     

    I’m just brainstorming thoughts.  Brain dump, remember?

     

    Think of this as your chance to voice your opinion.  Help us to improve our space and to enhance our offerings.  And if you wish to find me personally on Facebook or Twitter, just search my name.  I’m easily found.

     

    Please be well and have a great day.  Life truly is Grand!!

     

    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: October 13, 2009