thanks
 

At first, I would like to thank the opportunity to be in this place.
Myasthenia is a very new thing in my life. When I think about last May, I see that this word was not in my vocabulary then.
One thing that I'm sure helps me a lot is to realize that I'm not the only one discovering every day how much life is a mistery and how much is good to see that we are not alone.
A good and friendly day to everyone.

Thanks bluestone...this is a good place -it can help you through the tough days and we can learn from each other as we go. It seems like just when I think I have this Myasthenia thing figured out it throws me another curve ball and I have to learn about something new. I have finally come to a point where I mostly think, "It is what it is". Each day is a little different, some are more challenging than others - but I am still here and i'm trying to make the most out of every day. It is good to have you here with us.
Gabe

I never thought that I’d ever get a disease like this ,when I was younger I never got sick and then out of the blue my eyes just closed and I was at work so I went to the ER and that was the first time I have ever heard the word myasthenia , and even now sometimes I just think that the doctors gave me the wrong diagnosis sounds dumb I know but at times when I start to feel good then I think that they just made a mistake and at other time when im feeling really bad I think that they made a mistake and I have something worse but what keeps me going is that I know a lot of people who are worse off then I am but I have to say that this place has helped me more than anyone knows , and I hope you get as much out of this wonderful forum as I did ,, I wish everyone better health

Hi, Gabe and Littlewish
I understand what you said, Littlewish, about thinking sometimes that the doctors gave the wrong diagnosis, and one day when you are feeling better you think in one way and the other day, when you are feeling very bad, you think in other way, and time goes by and this disease is always putting a challenge to our lifes.
I hope, Gabe, that one day I can think as you and 'finally come to a point where I mostly think, "It is what it is". '
I'm still in that point where I'm asking for answers that never come and wishing for some kind of peace that, till now, I'm not having.
Thanks for your words.
It's good to talk with you.

Bluestone, I've been dealing with this aggravating disease of ours for over 30 years. I've had to learn to take what it dishes out, to pace myself, to learn my limitations, and to never give in to it. If it won't allow me to do what I want one day, I just put that thing off to another day, and find something else to do. It seems like my slogan has become; "Work a little, rest a little!" At the end of the day I often surprise myself with how much I was able to accomplish. :D
Hugs,

Hi Lois,
you are right, one of the most important thing with this disease is to accept the limitations and I think this is my main trouble. Myasthenia is a very recent thing in my life and everything changed since it came. I'm having a hard time to deal with the features and flutuations of MG and I'm not finding some support here...
Thanks for your words.
Hugs

bluestone, when you say you are not getting much support, is it your family that is not providing you with the support you need? That can make a bad situation worse. I've fortunately always been able to count on the help and understanding of my family. Just as a suggestion, why don't you investigate some of the useful sites in the sticky at the head of the MG forum. One in particular that might help is http://www.myasthenia.org.au/html/lifestyle.htm
You might even try printing off the info if you can, and share it with the ones who seem to be lacking in support. It will give them a better understanding of what you are dealing with, and help them to see that this is not all in your head, or something you are making up to get attention, or any of the many other misconceptions people can have about myasthenics. The unfortunate thing about MG is that others really cannot see your fatigue, or feel the ache of tired muscles. Once our loved ones are a little more clued in to the symptoms we display, they can begin to pick up on things: the sad, tired droop to the face, the 'half-mast eyelids', the tendency to choke, the way we start walking slower and slower the farther we go, the voice that gets softer or threadier, or even gives out altogether. Or any one of many other symptoms.
Hugs,

Lois,
I read this text on lifestile and many others from MGA, MGFA, etc. One of the first things I have done when I entered this forum was check this stick and read the ones that I didn't know. When I discovered that I had MG, I started to search in the internet about this disease and for my surprise, there are almost nothing in portuguese (my native language) for people who are not doctors or medicine students. (English is not fluent for many people in my country and Spanish is very different from Portuguese). For my closest friends, for example, who are helping me many times, it's hard to understand MG and I'm the one who is trying to write something not so technical in our language. I hope I am able to do this because it would help others with the same problem.
My family is not close to me and sometimes the wish is to have the support from it.
Hugs

Thanks for the explanation, bluestone. Unfortunately, I don't speak Portuguese. Spanish, I'm fluent in, and could have translated information for you. I'll try to research and see if I can find anything online for you in Portuguese.
It's doubly dificult for a myasthenic when they cannot count on the support and help of their family. I'm so sorry that you find yourself in that situation. The wonderful thing about NT. though, is that at least here you will find encouragement and understanding. We've been through what you are going through, and we understand.
Hugs,

Lois,
thank you very much. I don't have problems with Spanish, but my friends have. I'm trying to translate something from English and write a little little book in Portuguese with the main information about MG.
By the way, I read the article about the study of myasthenia and the effects of cooling the body's temperature. Interesting. As I live in a tropical place and the disease is worst when it's very hot, it's good to know this kind of thing.
Hugs.