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Old 06-12-2009, 12:47 PM #21
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Smile Hi Leaningin!

You poor thing! Girl, I wish you lived in San Antonio..........that way I could actually help instead of just typing! I tell you, I wanna smack the taste out of your sister's mouth! What nerve!

I know I keep repeating this, but I TRULY wish some of our less thoughtful family members could feel like we do for a day - 1 day! It would shut them up really fast, don't you think?

I think a lot of us are Type A people - we want to do it ourselves and don't want to complain, but it only hurts us in the end........

Are you doing better now? What did they do to you in the ICU? What meds are you on?

Big hugs!
Erin





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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.
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Old 06-12-2009, 01:02 PM #22
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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.
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Old 06-12-2009, 01:02 PM #23
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Smile Hi Rach!

You, know it is wild, but I never thought about sibling rivalry until I became ill. My sis is 5 years yougner and the "baby".......I was never jealous of her! Everything good that happened to her made me so happy, but she even accuses my mom of playing favorites - she doesn't!

I am in a much better mood today. I am able to work from home, so I am just taking it ez for today!

Your last couple of lines made me laigh so hard! You have a great snese of humor!

Big hugs!
Erin







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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
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Old 06-12-2009, 02:43 PM #24
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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 , no matter what anyone else thinks
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Old 06-12-2009, 04:28 PM #25
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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
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Old 06-12-2009, 07:04 PM #26
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Smile Hi Joanmarie!

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

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

Big hugs!
ERin







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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 , no matter what anyone else thinks
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Old 06-12-2009, 08:51 PM #27
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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.
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Old 06-12-2009, 10:21 PM #28
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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.
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Old 06-12-2009, 10:25 PM #29
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Quote:
Originally Posted by SharS View Post
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
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Old 06-13-2009, 12:02 PM #30
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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!
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