Thoughts from Alison that might at least entertain you!

Orange Ya Curious

I discovered this site, Orange Ya Curious, this past week while I've been poking around looking at "National MS Week" stuff from the National MS Society.  It's a simple site, set up nicely with links on different topics (answering lots of different questions) related to MS.  It's a pretty cute campaign, I must say!

From the National Multiple Sclerosis Society: MS Impacts Us All

Walk MS June 23, 2012

"Walk to create a world free of MS."  I've decided (and my husband is the first to agree to join my team) to participate in this fund raising event for the National Multiple Sclerosis Society this year!  The walk is Saturday morning, June 23rd at the Hudson Mills Metropark in Dexter, MI.  I'll be building a team (hopefully) that will work a bit and walk to raise funds for MS medical research.  The advancements to date in understanding and treatment of MS are astonishing, and in some strange way I feel lucky to have been diagnosed. Lucky, that is, to have been diagnosed now rather than many years ago.  Research will continue to uncover new methods of treatment and better understanding - and may realistically someday find a cure or a way to stop MS from happening in the first place.  I'd love to have your support in this fund raising effort in whatever way you can offer it!

The MS Hug

Learning about my diagnosis of MS happened very quickly in the world of medicine, testing, and various criteria that have to be met in order to say that something is definitely the case.  John and I (and our families) were surprised, shocked, scared, sad and hopeful all at once. 

In the four months since my diagnosis, we've learned a lot - and still have a lot to learn.  As I'm learning more and more, I'm finding that I have likely had some symptoms associated with Multiple Sclerosis for quite some time.  It's interesting and somehow comforting to learn these bits and pieces that make more sense in retrospect. 

One of the symptoms that is a bit mysterious even as a known and identified MS symptom is the "MS Hug."  Several years ago - perhaps at least 10, and maybe more - I talked to my doctor at the time about some intermittent pain around my chest/sides/back/abdomen.  She guessed at the time that I was experiencing intercostal muscle spasms.  The intercostals are very small muscles between/around our ribs.  The doctor theorized that because I'm a trained singer, and I breathe very deeply most of the time naturally from studying voice, that I was hyper sensitive to these muscle spasms.  This idea meant that the kind of spasm I was hurting from might not be all that uncommon, but other people might not breathe as deeply on a regular basis and so might not notice them.  This seemed (and still does, really) like a pretty reasonable explanation for something I grew accustomed to.  Now, though?  It makes a heck of a lot of sense that this could be a symptom of my MS.  This blog post contains the best description and explanation for the MS Hug that I have found so far.  The blog is on the Multiple Sclerosis Resource Centre website, a nice resource site based somewhere in the UK that I have happened on. 

Interesting, indeed.  I'm gonna keep on with this learning stuff... 

(Spell checker on my blog platform really wanted me to change the spelling of intercostal to Pentecostal.  It occurs to me that I also may experience pentecostal muscle spasms on occasion.)

Taking back a little bit of Control

So this was our dining room table as of yesterday morning.  About 90% of what you see is information, tools, and "stuff" related to my new super power, a.k.a. Multiple Sclerosis - and my new medication to go with it.  The volume of "stuff" has perhaps been the most overwhelming part (for me) of learning about our diagnosis. 

(And yes - I do mean Our diagnosis because this adventure is affecting John just about as much as, and maybe even more than me!) 

I decided early this past week that it was high time to at least get the stuff under control so I might feel a little bit like I'm learning and able to control something.  I started out yesteday by hunting out a few tools for taming the stuff.  The requirements I established were something pretty, something with a lid, and something that didn't require new furniture or shelving to house it. 

After a shopping trip when I got the tools I was looking for, plus a few other errands, I headed home to clean things up.  I got distracted briefly by assorted other tasks that seem to present themselves whenever I try to clean something.  As with most cleaning/sorting/organizing task work, I had to make a much bigger mess before things got better.  I did, however, succeed!  Hooray for me!!  In the process, I even managed to learn a bit more about my drug (Copaxone) to manage the MS.  I feel especially good about getting the drug information and contact information for anyone and everyone we might need to call on for support in order. 

After successful organizing and taming of the stuff, I started hunting for a place.  This place seemed suddenly ridiculous in this state: 

And so, the information and stuff is now housed here: 

For some reason this little bit of organizing and reclaiming the dining room table feels like an enormously significant victory!

Multiple Sclerosis

Yep, so here we go...  I haven't been keeping with the blog thing since my latest adventure began.  We have known now for about 6 1/2 weeks that I have MS.  It's not a secret from much of anyone at this point, so I decided I'm ready to revisit my blog.  I don't know at this point if my blogging will lean towards lots of MS thoughts and/or details, or not.  For now at least, here I am!  For anyone who may be interested to read a bit, consider visiting the National MS Society website.  Boy oh boy, do they know a lot - and do I have a lot to learn!