thanks,
 

guess this illness makes us more vulnerable and insecure,

even if we don't want to think so.

and each of us responds to this in a different way.

and we all have our hard times, when we feel that we are constantly swimming against the waves, no matter what we do.

and we all want to do something to make it better, for us and for others in the same boat.

and I am sorry that this all turned out into such a fuss. this was not my intention. and am glad that you think I can do something for this community.

I promise to try and do my best.

alice

I agree with you.

I feel these things you say sometimes...more vulnerable and sensitive to criticism than I used to be before MG. I want to help others here in this community. I go back and forth between feeling like I said too much and then feeling like I don't say enough (usually due to feeling tired/weak). I ask myself how is it that a person normally confidant in life can get so vulnerable, and it is the MG.

I appreciate your presence in this community, as well as everyone else here that has something to share.

Thank you for saying it.

WHEW!! Alice, you are still here!!

I have always felt that this disorder we share DEMANDS that we "stick together". We have enough trouble standing up for ourselves when we see our neuros, pulmos, gps, etc. -- "fighting among the troops" is just unacceptable.

Alice, YOU did NOTHING to bring this on. It has happened before -- and I am sad to say that it will probably happen again. I don't know if we can blame it on "roid rage" or jealousy or just plain ole bad manners.

The first time or two that this happened to ME, I did feel sort of vulnerable and insecure. NO MORE. I REFUSE to let ONE person (or a couple of people) with "issues" "steer the rudder of my boat". Alice, I hope that someone who is as highly regarded as you are can SEE that what has happened is just NOT RIGHT!!

By and large, this is a FINE group of people -- VERY SMART -- VERY GROUNDED -- VERY KIND -- VERY GENEROUS -- VERY COMPASSIONATE. Do NOT DOUBT yourselves!!

Ok, end of sermon. (Have I told you all that my brother is a preacher?? LOL)

#@!!, life itself makes me feel vulnerable and insecure, let alone this disease.

I have to say something though. Everyone deserves our kindness. We don't know what makes someone feel so awful, we have no insight into anyone's situation. Someone with Tourette Syndrome, bipolar disorder, low glucose, nothing good going on in their life, PTSD, a victim of abuse and for lots of other reasons, people often don't have "control" over their emotions or actions. I have PTSD and, let me tell you, there have been a couple of times lately that I could've completely ripped someone apart - without even wanting to! ;)

So I think, especially this time of year, we need to all have some compassion for everyone.

Alice, I respect you professionally and personally. People who have so many difficulties and still try to improve the lives of others have nothing to apologize for.

Annie

Annie, you are a jewel -- the epitome of compassion!!!

(((HUGS)))
jana

criticsm is very important.

I myself have a lot of criticism, and that is what made me think and try to change the way things are.

people who criticize, are people who care.

I much preffer criticism to indifference.

I always tell my patients, my colleagues and any one around me to tell me if they are unhappy with something that I do or say, and I will try to change it if I can.

I myself say what I think, even if people don't always like it.

but, there is a thin line between constructive criticism and destructive criticism.

and sometimes when we are too emotional about something, we can cross that line, without noticing.

and when people have had bad experiences, it is much easier to step on their toes, and say something that will be interpeted in the wrong way.

even seemingly good words and phrases, such as "you have to take a positive approach" or "be optimistic" can sometimes be extremely annoying.

I too have been told numerous times to ""relax" and all will be well, when I had life threatening respiratory symptoms. and this not what I meant, and if this is how it was interpeted to the extent that someone was ready to think of sueing me for saying that, obviously this sentence has to be changed and made more clear.

I hope that Deb also understands my extreme sesitivity to having my professional skills being questioned like that, and if she thinks that I have missconceptions about this illness or don't uderstand somehting in the right way, I will be glad to hear and learn.

and I am sorry if what I said stepped on her toes, or brought back some old pain.

I don't talk a lot about what I have been through, but trust me, I too had my share. and I can understand that being a nurse who has dedicated her life to help others in their suffering, it can be even harder in some ways.

alice

Alice,

I am so glad you decided to stay, as I said in the other post, first and foremost you are a PATIENT with MG just like the rest of us and we all are here to support each other and to learn! I know I learned more from this forum in the last year about MG than I have in the 19 years I have been DXed. I for one am so thankful for all of you.