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Monday, May 9, 2011

Who makes up my "support team"?

     As I mentioned in an earlier post, it is really important, no crucial, that you eventually realize the need for what I call a "support team" that will consist of family, friends, medical personnel connected to your treatment and anyone else who may be of assistance to you and your management of RA.  Although you may not have a specific list somewhere with all of these folks listed on it, you should know that such a team, however formally or informally you label it, exists.  Why?  Because you cannot, I repeat, cannot, manage this disease successfully without them.  
     Family and friends help on so many levels - as emotional supporters, cheerleaders, shoulders to literally and figuratively lean on, advisors, objective and, when necessary, subjective sources of information when making choices and decisions.  Most of all they are there to give you love and companionship and to reassure you that YOU are still YOU despite the changes you have had to deal with.  And they are there to kick you in the butt when the pity party gets to be too much and you need someone to say OK, pick yourself up and keep going, you can and will be OK, different, but OK.
     Next are the medical personnel who are your professional lifeline to the management of RA.  Developing a consistent, respectful, and ongoing relationship with this group of folks is vital.  I can talk to my Rheumatoligist and Primary Care Physician about any aspect of RA with confidence and the knowledge that no question is foolish or wrong.  I highly recommend that you bring a list of  questions or concerns to your appointments.  My docs know that when I come in there will be a piece of paper in my hand with my "list" as I call it.  Now that does not happen every time, but most times.  Sometimes it just has a single word on it or a single issue like "lower my prednisone dose" or something like that.  And I keep this list in my purse so I can add to it when the thought occurs to me.  I would never remember what I needed to discuss if I waited till the day of my appointment to compile the "list".  It is ongoing and fluid.  Sometimes a question or concern is dealt with prior to the appointment so it gets removed...always a nice thing to happen!  
     A word about the staff at the physicians offices and hospitals you deal with.  They are as important a group as you will be working with.  Most of the time they are the first line of folks you deal with when making an appointment or calling with an immediate issue that needs addressed.  Treat them with the respect and admiration they deserve!  They are so busy, and often under-appreciated and overworked so be patient, kind and caring and it will serve you well.  
     Another "group" of sorts are the folks you come in contact with who are peripheral but nonetheless a part of the "team".  For instance the pharmacist, the medical supply techs., the  insurance claims folks, etc.  They are all part of the group you must work with in a positive and productive way to have success with the management of RA.  These folks though not a day to day part of the "team" are just as critical to the smooth journey you want to have.
     Finally, I simply had to accept that counting on and turning to others had to become a part of how I operate now.   Gone were the days when I could pretty much make all the decisions and handle all the responsibilities myself.  It meant re-defining who I was now and that was tough indeed and the subject of my next post.

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