Ticked off!
 

Aw hon !!!! :hug: Big hugs for you first of all !!! :hug:

I understand your feelings.... My family, my friends, tend to think I exaggerate my illness (my several illnesses... :rolleyes: ) and think I can decide if I want to go out of bed or not... they dont understand some days, I simply cant !!! :mad:

Try not to get mad, because, at the end, it is you who will be having a bad time with that bad mood.... You know, I guess people who arent sick, simply dont understand... and, I think they dont even realise what they are saying.... so.... yeah, I understadn you but I suggest you not to get mad....

Smile, smile !!!! :)

:hug: :hug: :hug:

Only one suggestion Erin.

Tell her where to go and how to get there. Tell her to stay up and busy for 72 hours and try "not being lazy" because that's about the amount of uptime that MG will make your muscles and body feel like. I know because I've done 72 hour shifts at work before I developed MG (not in a loooong time though).

We understand here. Sadly those without it simply cannot truly understand.

Feel better :)

Erin, PLEASE don't let her upset you this much. You have been doing so good and you don't need all this stress sweetie. This is just the way she has always been and she's not going to change anytime soon. I know you love her and that's why it's so upsetting to you. I have an older sister who's a nurse no less, and she refuses to even acknowledge my MG. So I know the hurt and anger, but I had to let it go for the sake of my health. Maybe you could take a bubble bath and just relax. Then get some really good icecream, forget the diet, and watch a good movie or one of your favorite shows you have on dvd's. I'm sending you big hugs and will be keeping good thoughts.;)

Hugs,
Pat

Erin,
Sorry you have had a rough day with your sister. Hugs to you! I know that there are many people who see me and know the "old Simon" and say, wow you look so good....if they only knew how I was feeling. After I got MG, I have to look at people in a whole new way.....don't be judgemental of anyone....you really don't know what people are going thru. I have family members who don't understand also. It is tougher when they can't understand, as you would expect your family to be the ones who could understand. Hang in there and know that you have love from all of us and we understand!
Simon

please take a deep breath-vent,write and even talk to sis after to let her know agin and agin what you go through! icu-what would she have done? like everyone else i say don't waste any perfectly good energy on her! save it for the good things in your life-chocolate,junk food, or whatever brings you that good feeling!! remember you don't have to tell what goes on behind your closed doors!! :p

Hi Erin: I'm so sorry you had to go through that today, especially when you're making an effort to do something you love, working. Your sister definitely crossed the line. Unfortunately, people tend to have short memories and don't think about you being in the ICU and the consequences of a disease. Don't let this stop you from working as you can or from being balanced and not pushing yourself beyond MG limits.

Perhaps you could remind your sister that you want to work, but do struggle and can't afford to crash again, for your sake and your family's sake. Maybe you could tell her that you know she does the best she can and so do you.

Erin, I'm sorry this happened.

Erin, I am so sorry and yes I know what you are talking about. My answer was I moved hundreds of miles away. Sadly MG is not something people can "see" like a broken leg so they don't understand it but no worries WE understand you so rant with us as we feel your pain. {{{{BIG HUGS}}}} :grouphug:

Hey BlueMajo!
 

In the same boat
 

I totally understand. About a month ago I had an acute crisis - couldn't chew or hold my head up. I asked my sister to drive me to the ER. She said she was already settled in for the nite and besides I was probably just exaggerating. I wound up in the ICU for a week and almost had to be put on a vent.

I find this the most difficult part about this illness - people don't understand how absolutely weak we are or how little control we have over how we feel from one day to the next. My personality is to push on when I shouldn't anyway and other people's disbelief in my illness makes it even harder for me to give myself a break. It makes it a very lonely experience.

Hi Brennan!
 

Hi Pat!
 

Hi Simon!
 

Hi xmas!
 

HEy Shar!
 

Erin, my sister is 8 years older and I raised 4 of her children when they were very young for a few years...long story here too! I'm so glad you had such a great evening and just relaxed! Big hugs, Pat

Hey Tbarney!
 

Hi Joanmarie!
 

Hi Erin,

whats the saying you can choose your friends but you can't choose your family!

Could be a case of sibling rivalry? Maybe she feels that you take attention away from her.I know it sounds crazy but when my sis became disabled I resented her for it and struggled to believe it could be happening. Ok I was 16, but sometimes people just dont get over the rivalry.

My sis and I are very very close now. I think because Im now ill I can see it from her side.

I say to people walk a mile in my shoes......cause I know I bloody can't.

Hope you have calmed down!

Love
Rach:hug:

Hi Leaningin!
 

My little one is coming home from camp today. I can't wait to hear what she has to tell us about camp.

Another thing that has worked for me to help people understand. When I read a book about MG, I have my husband read it too. It helps that he can read about other's experiences. These books usually address people having a hard time getting their family to accept that they have MG.

Hi Rach!
 

Erin, I am doing good, relaxing after my sons graduation the other night. I remember I was so made when we went to the high school because we went to park up on the hill in the handicaped parking and the first police office said, "well you don't look handicapped, where is your card" I told him I had permenant plates on the car and he actually sneered. I told him what was wrong with me and that my husband was getting over a heart attack and couldn't walk far, again a sneer, as I said, if they can't "see" it then it isn't there. But hey us MGer's hang tough! We rock :cool: , no matter what anyone else thinks :)

Hi Erin,

I'm so sorry you had a rough day yesterday, but it's good news you are feeling better today - I think that is one thing we really learn with MG, to take one day at a time and really be thankful for all we have. You are such a positive person and I just wish everyone else could understand the horrors you've endured over the past while! Try to keep a hold of your positivity and remember that people who are ignorant aren't worth your time/energy!

All the best!
~Kathy

Hi Joanmarie!
 

You go, girl! Give em' Hell! I love your spirit!:D

As for that police officer - what a loon! What a goof ball!

Big hugs!
ERin:D

Hi Erin, sorry you are having troubles with your sister, I really feel for you.
And for everyone else to.

I am so blessed, I have a wonderful sister, who is 4 years older than me. She is always so concerned about how I am going, and if she can do anything for me. If I need to go to Perth for specialist appointments, she will take "crisis leave" just to take me.

I know just how lucky I am in having a caring family, and really do appreciate them all.

Hi Erin:

I'm glad you had a better day today and I'm especially glad you treated yourself to a relaxing evening of chocolates, tv, etc.

I'm doing okay - a little rough tonight. I came to the forum to help cheer me up, and it does! My doctor called me in to the hospital today for double IVIG treatment. It took 10 hours for 1 gram. Good news, my nurse was able to get my vein on the 2nd stick! But, the double IVIG is pretty rough. I had a bad allergy reaction after it was finished and broke out in hives all over. I had to take a mega dose of Benadryl which I don't handle well. Plus, I have an elephant sitting on my chest. But....I am really hopeful that after a couple of days, I am going to feel 100% better!!

Take care of yourself. I hope you and everyone else has a wonderful weekend.

Glad to hear that things are better for you even with the side effects. I had IVIG on Monday and Tuesday and am still having some side effects...but it's getting better. Hang in there and have a great weekend! Hope this note cheers you some!
Simon

The plot thickens Erin! You mentioned you are your sis's boss. I'll be that part of her resentment is that she doesn't have a health issue to deal with and is there when you CAN'T be and she feels that maybe you should switch positions? Just a thought, but working with family is very difficult.

I had a girl try taking a lot of time off with various excuses and when I talked to her about it she through my attendance at me. I very calmly explained that mine was due to my disease and that the owners were very aware of my condition, and that that was no excuse for her lack of attendance for all kinds of different (and I know made up) reasons and proceded to complete her written warning.

I didn't feel at all calm though, I wanted to scream at her to try to get through what I was going through and challenge her to make it to work for even 2 hours in my condition. She was the only one that was anything but supportive to me in my office.
I since had to fire her for other reasons (theft!), but it just goes to show how some people's minds work.

I'm sorry it's your sis you're having trouble with, though! That's really tough.
You've got the completely right idea though - take care of yourself, first! And blow off the bad attitudes you run into as quickly as you can.

Love to you - glad you're feeling better about it now!