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Old 11-16-2012, 09:46 PM #10
AnnieB3 AnnieB3 is offline
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Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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wild_cat, Yes, it is beyond overwhelming that your entire future might be in the hands of a complete stranger. I hope you have a neurologist who is aware of this "power" and uses it wisely.

Your symptoms sound so very classic. Have you set yourself up for a good appt.? Have you written a simple "log" of symptoms, when they happen, etc? Sometimes it helps for a doctor to see symptoms than to hear us say them. Then they are also there as a permanent record.

I've had MG my entire life but only diagnosed at age 42 (misdiagnosed with lazy eye at age 10). I have gone through so many phases of adapting my life to this disease it's unreal. But that's the great thing about being human; we are adaptable. We might get there via kicking, screaming, crying, rocking or any other mode of coping but we get there.

It does help to really look at the phases of grief and know that they are useful, no matter what order you go through them or what ones you skip over. Hopefully you'll get to the diagnosis and treatment phases soon.

The brain is truly amazing. You might get a high from endorphins and oxytocin from exercising but you can get the same from playing music while doing dishes. And this might be borderline inappropirate to put here on this particular forum but there are people who can have an "O" while sleeping, with no activity other than brain activity.

There are some amazing leaders in the field of energy and medicine. We are each a field of energy, one that is largely untapped. If you can do some reading in that area, it really does help. For example, I try to focus every day on gratitude, love of what is around me and what I can do and that my mind is a playground I can hop around in despite MG. I meditate (which I've been taught how to do well), which really keeps me centered. I stay away from any "artificial" energy as much as I can, such as electronic things because they emanate electronic fields that can be harmful to us. If you don't know much about this stuff, it might sound like I'm getting off topic.

I do hate that I can't do what I used to and I still go through phases of anger over it. That's really normal! But then I get "real" and deal with my life the way it is and not the way I want it to be. But you're still in the diagnosis stage of all of this. Cut yourself a break. For whatever reason, you're having to go through all of this. And while it sucks, I do believe we all go through what we do for a reason.

You can't compare your life to anyone else's with any degree of success but, sometimes, it does help to look at people in NJ or NY who just lost everything or people who have ALS. But that's really just a coping skill. After you get a diagnosis, if you can see a psychiatrist or psychologist and get more coping skills, it really does help to handle an illness. Having one truly challenges you on a daily basis.

I hope you and your neurologist can work together to figure it all out. In the meantime, do something really nice for yourself. Pamper yourself. Let the expectations go and just enjoy the moment.

Annie
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wild_cat (11-17-2012)
 


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