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Old 01-09-2010, 09:10 PM
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jana jana is offline
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Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
jana jana is offline
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jana's Avatar
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
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"with some patients, they can excersize and maybe they'll have a bum leg, or eye after, for thats all this disease affects them w. Yet, you arent allowed to excersize AT ALL. No yoga, no walking, no running, no lifiting weights, no nothing, for I think its a life or death situation here, and you need to take this very seriously. If you push yourself, or even walk too much, you could without symptoms, have your lungs shut down, and not have time to get to an ER, and die. This is uncommon, yet your a patient that has to deal with it.'

Tyson, sweetie, maybe I MISUNDERSTOOD what you were saying -- I got the impression that your neuro was telling you that this was how you were probably going to have to live the REST of your life. THAT'S what I think is WRONG.

Annie is DEAD ON RIGHT -- I DO think that for RIGHT NOW you need to do NOTHING -- follow doctor's orders as closely as possible. Exacerbation IS serious business -- I stay in the recliner during mine (when I'm not asleep in bed at night).

I don't mean to sound like a "know it all" -- trust me -- I "ain't". But, living with MG gives you a major learning curve -- and I've learned a lot in the past couple of years. I was teaching one day -- flat on my fanny the next -- and doing NOTHING at all for SIX MONTHS -- yep, that's how long my FIRST exacerbation lasted BECAUSE I fought it tooth and nail -- sort of like YOU are doing.

MGers seem have a lot in common -- we often have type A personalities -- we go-go-go. I didn't have an "off" switch. Well, let me tell you, MG GAVE me an "off" switch. I HAD to learn this -- and I'm trying to SAVE you the TROUBLE and GRIEF of having to go through this yourself.

You MAY have a "hard to treat strand" -- but, I am doubtful. Again, I've been around a LOT of teenage boys -- and the jocks are the MOST hyper, type A of them all.

As for Prednisone HELPING -- sweetie, did you know that Prednisone can actually HEIGHTEN your anxiety -- like a MILLION TIMES?!?!?!?!?! So, even though it may be "knocking" down your antibodies, it is ramping up your stress -- and making your body produce MORE antibodies -- an endless ROLLER COASTER.

Let me say this AGAIN -- the STRONGEST medicine you have is WITHIN yourself -- I PROMISE!!

As for your therapist -- get him or her to try you closing your eyes -- breathing slowing and regularly -- picture the most peaceful place you can think of -- find some "nature sounds" to listen to on your ipod -- clear your mind -- try to do that ANY time you feel your neck or shoulders getting tense. Mention this to your therapist -- they will KNOW what I'm talking about -- and lead you through the steps, ok??

Also, get them to show you the calming place in the palms of your hands -- you can close your eyes and rub the area firmly with your thumbs -- it will calm you down almost immediately. Alternate hands while taking slow, deep breaths.

Is there a dog or cat in your house? Pet it!! Fantastic stress reliever.
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