Monday, September 18, 2006

Thought You Should Know...

     Two posts in one day...I must either be sick or bored!  And if you've already read the previous post today and are back at "Cheese" AGAIN, you must be sick or bored as well! LOL

     I was earlier sick or bored and decided to plow through my innie and outtie email box (uh, should those terms be reserved strictly for the bellybutton?!) and stumbled across an email I wrote to Joyce Nelson, the President and CEO of The National MS Society, back in August.  I was commenting on the August/September issue of Inside MS (see photo's actually the previous month's publication).

     This magazine is the Society's very own publication and, on occasion, contains some food for thought.  I find some of the articles personally useful, some I can't relate to at all, and a few others a bit of a load of crap...I have those same responses to ANY mag however, so this should not be offensive to the NMSS!  I think I get the magazine mailed to me because I donate a few bucks to my local MS Society here in Washington each year...if it's not coming because of financial donations, then there must be a HORRIBLE breach in my privacy and security system!

     Anywhooo...the magazine focused on isolation and MS.  There were a bunch of common-sense suggestions for how to keep one's self out of feeling isolated because of MS.  There were a few other blahty blah articles as well.  This focus struck me as rather "odd" devote an entire issue on isolation and MS?  What WERE they thinking?

     After some careful consideration (and some not so careful as well), it dawned on me that there really ARE MSers out there who feel isolated because of their disease...who ARE isolated because of mobility issues, etc.  Not everyone with MS is like me (DOH!). 

     So, I decided to fire off an email to Dear Joyce in my most professional tone, and see what happened...I am happy to report, so far, NOTHING HAS HAPPENED. LOL  That's probably best anyway.  But, because I listed a few of my favorite MS bloggers in my email, I thought maybe I should fill y'all in on just what I said...just in case the "MS Police" were to confiscate your computers or something:

     I just finished reading your "On My Mind" commentary re: MS and Isolation in this month's issue.  I'm not usually one to comment on these things, but feel this is a worthy topic of discussion.
     I am a health care provider working in the psychiatric field, and was diagnosed with MS in 2003.  One would think having a bit of medical knowledge about Multiple Sclerosis would have sufficiently calmed my fears, but it didn't.  I was initially devastated and immobilized with "what if's".
     I began a personal campaign to study, accumulate, and research as much information as I could to quell my anxiety and fears, which led me to the NMSS website among others.  I started emailing and chatting with MSers around the globe, desperate to locate any resource of information I could that might give me some direction or comfort.  I soon discovered a circle of friends via chat rooms who would answer many of my questions based on their own, personal experiences with the disease process.  This not only decreased my anxiety, but also answered so many of the questions NOT covered in textbooks or discussed on websites.
     This spring, I began a personal on-line journal called "Brain Cheese", which I have used as a forum to provide information and entertainment about my own experiences with MS. I discovered there are many such journals and blogs out there written by other MSers.  I not only write entries almost daily in my blog, but also try to read the daily or weekly entries of other MS bloggers.  This "MS Cyber Subculture" offers a wealth of clinical, personal, and practical information that we all share across the Ethernet with one another.
     Often what is available in print to someone with MS are carefully worded and printed brochures designed to "normalize" the experience and the disease...cheerleader information, if you will.  This format can be very useful to someone newly diagnosed, but lacking in depth for those of us who have already accepted and/or lived with the disease for a while.  What I find most inspiring and helpful in the blogs/journals is a chance to read about the obscure or "unusual" symptoms, side effects, or experiences we have.  The blogs are a format of discovery to say, "Wow!  That's happened to you, too?"...even when the medical establishment has yet to document it.
     There is no need in this day and age for ANYONE diagnosed with MS to suffer from either ignorance about the disease or social isolation because of it...if you have access to the Internet and are still able to see, read, and comprehend.
     I've decided to include a list of the MS journals/blogs I have found entertaining and helpful and perhaps you may choose to peruse them or "spread the word" about these resources.  As always, NO ONE can replace the medical knowledge of a doctor or neurologist, but I think anyone who reads these sites already accepts this common disclaimer:
     There's a top 10 list in no particular order, but are all blogs/journals I try to read and participate with. 
     I hope you find this email useful in some way and, if not useful, at least "food for thought".  Thank you for your many contributions to the MS cause.  I have been quite pleased to read your written contributions in the magazine as well as learn of all the progressive accomplishments being made toward research, treatment, and a hopeful cure.
     And, of course, I signed my real name and location.
     It will be interesting to see what response if any I DO get from the NMSS.  Frankly, I don't think the organization is one that likes a lot of controversy...but then again, my email was FAR from actually reeked of "nice". LOL  A bit unlike me really...
     So, now you know, fellow MS've officially been "outted" more hiding in your MS closets, my friends...



pjorpeej said...

THANKYOU!!  I'm really interested in reading other people's experiences with this damned disease but I had no idea all these blogs existed!  Where did you find them all?

I guess the part of today's ramblings that surprised me the most was that you didn't realize just how many shut-ins there were because of this illness.  I suppose I'm more aware since I've been (surprise! <grin>) pretty much a shut-in for 4 years now... I might get out 5 or 6 times a year if I'm lucky.  

Once you give up your license to drive, find it hard to walk for any distance and live in an area that has little to no public transportation, it becomes almost impossible to get out and live a normal life...  You're at other people's mercy and, to be honest, they find it easier to pick stuff up for you on their way home from somewhere else than make the trip to pick you up and then go back out again.... I can see their point and may even feel the same if the shoe were on the other foot.  

But I'm glad someone's thought about us.  I usually get that magazine but don't think I got it for July/Aug.  


mdmhvonpa said...

OOT!  They know where I am now.  Time to pull a David Banner and get the Hulk outta here.  Reestablish a new identity and start to build my army of Undead MS Zombies to take over the local Tastycake factories.  VICTORY WILL BE MINE!

hagartyjj said...

I don't think I got that issue....interesting.  Although I am not completely isolated I do agree that this illness brings forth some isolation to all of us...whether it is just having to give up things that we used to do (can't go out as much as we would like) or that we have lost touch with people (this too happens when you get sick) or even the isolation that many people feel from the depression (no matter have little or severe it may be) we experience from time to time with this illness.  

I think the email you sent is great!  If they were smart they would do an issue about all of us bloggers, let MS'ers everywhere know of this great support system where you get it like it is...not just something sugar coated out of a pamphlet.  

I hope you are doing well.  Take care of yourself.