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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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06-28-2010, 08:10 PM | #1 | |||
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Hey guys!
I was thinking today and remembering when this site was just a tad happier.........it seems several people have actually left due to negativity - -which I totally understand and am guilty of myself...... As far as I'm concerned this is the BEST site there is - filled with tons of loveable, smart, funny people placed in a horrible situation (for the time being) - there is ALWAYS hope for remission! ALWAYS! Granted, we all have bad days, but when the going gets tough we band together...........that is a beautiful thing to see! So...............................just for one week can we try and log in with just one piece of good news? Ideas for remission? Pet stories? A beautiful sunset? A small kindness that someone has shown us? I will always be grateful for this site! All of you have been so kind and wonderful! I hate MG, but feel blessed to have you in my life! My good thing for today is that my sweetie brought me home dinner and set up a cleaning service for the rest of this week.........can't get much better than that! Big hugs! Erin
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06-28-2010, 08:42 PM | #2 | ||
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How nice of your hubby to do that Erin! I agree that a little good news goes a long way. Today was just a wonderful day. In the morning my daughter got the expressive arts award in her grade 4 class. In the afternoon my son got his yellow belt black stripe in Tae Kwon Do. I got to sit there as the proud mommy.
Glad you are back Erin to put us on the right path! |
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06-28-2010, 08:55 PM | #3 | |||
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Hey sweetie!
What wonderful news! There is nothing more exciting than when something GREAT happens with our little ones! Let's keep the ball rolling and see what other great news we can learn! Love Erin Quote:
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06-28-2010, 10:18 PM | #4 | ||
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OK - here's mine for today.....
Had to take truck in for repair - braced myself for the 'bad news'.. turns out no biggie. It going to cost less than 1/4 what I thought - - and it'll be ready tomorrow!! Now That's Outrageously Good News!! And then ... it rained!! (haven't had rain for weeks) - - so I didn't have to drag out the hoses to water the yard! What a gift! So I had a GREAT DAY! |
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06-28-2010, 10:56 PM | #5 | ||
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despite my exciting day of hives and itching, I booked a one week stay in a secluded country cabin up in the mountains of NY with my wife. Huge place, the owners threw in one night for free, so 5 nights at a very reasonable price. I will be going end of July. Im looking foward to some relaxing time with just my wife. No other people
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06-29-2010, 12:24 AM | #6 | |||
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Senior Member
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Hey honey! What great news!
As you know I live in Texas as well and it rained like crazy! It was so nice! Let's keep the good news rolling! Gosh, I missed being here! Love to ALL of you! Erin Quote:
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06-29-2010, 12:28 AM | #7 | |||
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Hey hon! How wonderful and romantic! I can't wait to do the same........lol!
We are so blessed to have great spouses! LOL! It would be great to get together.....we need all the support we can get! love Erin Quote:
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06-29-2010, 12:55 AM | #8 | ||
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Junior Member
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My “ Let's get HAPPY! “
I will be leaving town for the weekend. First time away from home except to be with immediate family post MG diagnosis, I am a wreck thinking about choking, breathing, eating strange food and explaining neuromuscular junction malfunction (and oh …please NO photos guys). Fireworks??? Hikes???? Heat??? Oh my. But… throwing caution to the wind I leave Saturday. Erin , delighted you are posting again, Your repeated encouragement kept me going more than you will ever know, Glad you get to see Lilly soon. And to all a good night rest. C, |
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06-29-2010, 11:05 AM | #9 | |||
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Leave it to Erin to give us all a bit of happiness.
My good new is this...maybe I am going into remission or maybe I am just having some good days. For two weeks now I have had to cut down on my Mestinon due to overdose feelings (cramps and twitching in my muscles)...and I continuously am feeling better, althought the MG is far from being gone. Yesterday I went out with my kids harvesting Saguaro fruits, one of my favorite things to do. Couldn't go last year because there was no way I could balance walking in the desert, I could barely walk on a smooth surface without falling over...but yesterday I was fine and was even able to use the 10 ft stick to pull the fruit out of the cactus. Last year I could barely pick up small things or brush my hair let alone reach my arms above my head with a 10 ft pole. Hooray! I hope it lasts and even if it doesn't I am so happy to be able to go out and do something fun with my kids. I noticed yesterday that I am actually sitting straight in my chair and standing up tall - this may sound silly, but I have been slouching and not able to stand up straight for over a year now - this last week has been great (the week before, when I started needing less Mestinon, I was not good because I was in extreme pain from the muscle cramps, I thought I was going to have to go to the emergency room it was so bad). Thank you Erin! I look forward to reading more good news from everyone, and I hope everyone experiences a few good days with their MG.
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06-29-2010, 12:30 PM | #10 | |||
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Hey honey! I know EXACTLY how you feel.....I was so scared when I took my first trip to New York, but it was well worth it!
You know your body - don't let anyone try and convince you to do something you aren't comfortable with.......they don't have to deal with the MG. Take a deep breath, relax, NAP when you need to and just ENJOY! You deserve to be happy and relaxed. We are just a click away......... Have a GREAT time! LOve, Erin Quote:
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