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If The Shoe Fits

September 29, 2009

I’ve been doing a lot of research and networking on MS sites lately.  I spread the word about my own blog that way and I learn a lot in the process.   I have found a lot of blog sites where conversation is quite lively and other sites that give information of all kinds.  Even better, I’ve made some new friends from all over the world.  You can meet some of them in the comment section of my blog here or on my Facebook pages linked in the right margin. The question and answer type blog sites are packed with people and they talk about all kinds of things…mostly related to MS, but sometimes not…interesting either way!  I look forward to meeting more of you commenting on my blog stories and starting conversations here, too.

Someone asked me the other day why I put links on my blog that don’t exactly match my way of thinking….well duh!  I am sure that everyone reading my blog has a mind of his or her own and might think differently from me!  I put links on here that have information of all kinds and from as many sources as I can find not only because I want to know what’s going on out there but also because the more information you and I have, the better we can evaluate what treatments and approaches might be best for us in our individual situations. 

My thought is, read all the information, try it on for size, and if the shoe fits, take it home with you.  If not, leave it for someone else.

When I go see the doctor, I like to go with questions and topics in hand that I’ve read about online and think might be worth considering for my own treatment.  That has often helped my doctor and me to better match treatment options to my needs and my preferences and thereby choose treatments that work best in my life, and that’s very important.  After all, treating our MS is really about maintaining quality of life and understanding how that is defined by each of us as individuals is the key to achieving the best quality of life possible. The only way to really do that is to consider the pros and cons of all the options, to hear the info from the doctors, the drug companies, and the patients who go before us, and then really think about how we feel those options would, or would not, make our lives better.  We have to be well informed in order to participate in defining and maintaining the life we can have despite MS.  It’s by participating that we will get what we want…to the degree that it’s possible.

I work on this research and networking almost every day and I find more stuff to list almost every day.  Even when I don’t find a new site, I find new info posted on sites I frequent and that’s great, too.

I hope you’ll take a look at the Links page in the right margin and check it regularly for new ones.  I look forward to a growing group of you joining our conversations here and on my Facebook pages, too.  I am so enjoying getting to know you all! 

Jan.

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3 comments

  1. Jan,
    Making a list before going to a doctor is VERY important. How many of us, with MS, have difficulty remembering things? For me, from years ago, I began writing lists before going to see any doctor. I would begin my list a week in advance, writing chicken scratch messages and then to just re-write it the day of the appt to make it easier to read.

    Your doctor can not guess or imagine your complaints or problems and so, you need to be able to tell he or she. But if you freeze-up, feel uncomfortable of just forget, how will your problems get any remedy (if available)?

    Jan has a good blog here and I hope that she shares some of what she writes with the readers of Stu’s Views and MS News: (http://wwwmsviewsandrelatednews.blogspot.com)

    If you are not yet receiving my weekly MS related e-newsletter, we hope that you register at: http://www.msviewsandnews.org

    And I hope that Jan starts soon, sending pieces of hers ( her writings) to include on my pages.

    Best Regards,

    Stuart Schlossman – RRMS


  2. Stuart,
    Thank you for your comments and kind words. Your detailed suggestions about list making are right on point. I completely agree about the importance of taking a list with you to the doctor. I, too, keep a running list from one appointment to the next for each doctor I see regularly.
    I am really enjoying and learning from your MSV&N site and I would love to contribute writings anytime you have a topic you’d like me to write about…I will certainly add my comment to posts on the blogsite.

    Hope to see you here regularly! Take care.
    Jan.


  3. OT = Occupational Therapy.. This form of therapy is for the hands, wrists and arms.

    As far as how to handle all the email, Stop doing what you thought was going to be a breeze……

    With regards to seeing your site regularly, I will not guarantee this as I receive too many emails emails each day and Also need to work on other things too. Invite me back from time to time. And with regards to your blog writings, maybe now and then, you would want me to post the same, to my blog. Your message. Your inspiration for others…

    Best,

    Stuart



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