Wednesday, May 23, 2012

My Own Best Advocate!!!

          It has come to my attention - something I hadn't really paid attention to before... Call it an epiphany or just a "smack in the face" realization or what ever you choose... However, I was reading some of my "MS Buddies" blogs and there isn't a single Realistic Face for those who are suffering with Multiple Sclerosis (MS) in advertisements for medications OR in "our" literature... Now, how on EARTH do those who are expecting to get funds suppose ANYONE is going to feel compelled to donate their HARD EARNED money to a foundation or charity who is not PROVING they need the help... "Our" plight - those who suffer DRASTICALLY with the  spastic muscles, the pain, the HORRIBLE insomnia, the problems with B & B (Y'all KNOW what I am talking about), AND the problems with being able to walk or EVEN MOVE - is not something that should be shown by models who are "Up and At 'em!" and able to move easily!!! So I have come to the conclusion, instead of sitting back and bitching about it - I am going to take a "stand" and do something about it!!! I am going to be my own - and my "MS Buddies" best advocate... I am not only going to speak out to everyone I can about this, I am going to write to drug manufacturers, the MS foundation and anyone else I can think of!!! We need to have Realistic Models to call attention to this dreadful disease that is crippling us all that suffer from it... SO, with this said, I AM CALLING ALL that suffer from MS out there on my friends list - EVEN IF YOU DO NOT SUFFER from MS, but KNOW someone with MS - Please, take a "stand" Tell people YOU are NOT going to take this "Sitting down" anymore!! YOU'RE the REAL FACE of MS!!! You're the REALISTIC DEMOGRAPHIC of what is actually happening!!! Who else is going to be your own best advocate other that YOU??? IF you are not willing to speak out for YOU, who else will???

        I have to admit, I am not THAT bad off - YET... However, I have my days where I feel like I can't move a single muscle without pain and spasms... I have known and loved people who have not been part of "their" demographic examples of "our" disease - MS... People who HAVE a VOICE, but not the ability to move, anymore, by themselves... They are fully dependent on others to move them to the bathroom so they can use it, to wash them, to feed them, to do EVERY SINGLE daily living skill or NEED for them... I lost my grandfather before I even got a chance to know him - as I was too young to remember him - due to complications all thanks to HIS MS... That was in 1971... These individuals deserve to have their voices heard!!! All those who are too shy to speak their minds, DESERVE to have their VOICES heard!!! SO, I have decided THIS is the reason my life has taken this course and the REASON I developed Multiple Sclerosis... Yes, It very well may be just part of the Human Condition that we are all born, we all have a chance of developing certain diseases, and we ALL DIE - as it IS part of the HUMAN CONDITION... However, I am a STRONG INDIVIDUAL with a VERY STRONG WILL and EXTREMELY STRONG DETERMINATION!!! I WILL MAKE A CHANGE!!! If this is the reason why I developed this horrid disease so I may know and understand - to speak out with a pure understanding and so I may speak the honest truth, SO BE IT Lord!!! I will do so!!! With God's help and His hand in mine, I WILL make a DIFFERENCE!!! I WILL tell my story!!! I will do what ever possible to make "them" realize "their" mistakes!!!

         This is my solemn vow to you my "MS Buddies!!!" I swear to you, I will do what I can!!! However, I also need YOUR help... YOU MUST be your own BEST ADVOCATE as well... IF you feel something is wrong - SPEAK UP!!! Even if it is with your doctor... Trust me, THEY do NOT always know best... Just because they are a "doctor" - THEY DO NOT KNOW YOUR BODIES!!! Only you do... It is your body, your health care, and YOUR RIGHT!!! You can DEMAND any tests you feel is necessary... Even if your doctor doesn't feel so... You can DEMAND to see ANY SPECIALIST... Even when your doctor doesn't feel it's necessary... You have the RIGHT to review YOUR MEDICAL RECORDS and RECEIVE a COPY of any part or the whole thing IF you so choose... You have the RIGHT to DEMAND a second opinion at ANYTIME... You have the RIGHT to REFUSE any tests you deem unnecessary... YOU have to be your own best advocate my dear friends... This is something I have learned the HARD way - after a needless week in the cardiac wing of Robert Packard Memorial Hospital in Sayre Pennsylvania when all I had was Pleurisy... Trust me, it was retarded, ridiculous, and a very long story why I was there... I should have fought, but I thought the ER doctor knew what he was doing... NEVER again will I put the trust in doctors like that again let me tell you... UNLESS of course it is my OWN Dr. Scott (my family doctor) or Dr. Britton (my neurologist)... However, even with them, I still stand my ground and tell them exactly how it is...

       I REPEAT, YOU HAVE to be YOUR OWN BEST ADVOCATE... I can not say that enough... I would shout it at you if I could or thought it help get my point across...  I think this applies to US (those with MS) now more than ever...

Hugs and Smiles to all :)

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