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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | |||
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Senior Member
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First day (of 5) for my monthly IV IG - day from Hell! Got there @ 1:00 but didn't get my IV IG started till almost 4:00. The nurses were amazing as always, but I thought I was going to go out of my mind!
![]() Granted I am very thankful that I am able to get this on a regular basis, but why do they make everyone wait 2-6 hours before starting? My son was calling me all day long asking when I was gonna come home - he was hungry. On the positive side, I was able to get some stuff done and my Northern Exposure videos were here when I got home - love that show! ![]() Now @ least I have something to DO at the hospital! LOL ![]() I'm going to go to bed now and watch some movies with my hubby! ![]() Hope this finds all of you well and strong! Big hugs! Erin ![]()
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Erin . |
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#2 | |||
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Erin, Sorry to hear of your rough day.....but it does get better! Hope today's treatment goes better! Have a great day! Simon |
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#3 | |||
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Senior Member
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Hi Simon! How are you today? Are you feeling better?
I'm back @ the hosp right now getting more of my juice - great stuff! I should be home by 10:00 or so, but on the positive side I can sleep in tomorrow! YAY! ![]() Are you READY for you liquid gold? How long do you get it for? How many mL's? Doesn't it just make you feel amazing? Can;t wait to hear from you! Erin ![]()
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Erin . |
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#4 | |||
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Erin, Glad you are back getting juiced today!! LOL! I am ready. I had to go to physical therapy today and just got home and I'm beat! I go Monday and Tuesday for my juice and can't wait. I don't know exactly how many mL's, but it takes me about 4 hours for each bag. I do one each day for two days. I just pray for no side effect this time, as last time I got sick on the second day with headaches and nausea, but boy did I have the strength.....!! They will pre-treat me though, so hopefully I will be fine. I hope your experience today is better than yesterday! Take care and let me know when you finish. Simon |
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#5 | ||
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Junior Member
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glad to hear one day is done! how old is your son? it makes me laugh because my son is 30 and ate pband j everyday for years!! if he stopped by he'd call first to see if io ahd fresh bread,even when he moved out at 21. now he's married but when he is really sick-he calls good old mom and asks if i could please bring him 2-3 pb&js. and a few extra for later in the day. i have the magic touch!!
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#6 | |||
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Senior Member
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Hey hon! My"baby" is 17, but he still loves it when I cook!
![]() ![]() We do have the "magic touch" huh? ![]() Today has been much better - much better! I know it sounds crazy, but I can already "feel" the effects of my liquid gold! How are YOU today? Are you feeling OK? Big, big hugs! Erin Quote:
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Erin . |
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#7 | ||
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I understand that other appointments can run over and things happen that get them behind schedule, but when it gets that long I'm tempted to tell them they should do the appointment for free, for using up so much of my precious time and energy. Okay I'm done ranting sorry. I hope you have a better day today, and hey look at it this way, you're getting your liquid gold right now. I hope it is as good to you this time as it always is. Kristie |
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#8 | |||
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Senior Member
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Hey hon! How are you doing? The little ones? Your hubby?
I know what you mean about the hurry up and wait thing - I wish I could get a refund for every time I've been made to wait to see my dr - I'd be a rich woman! ![]() You are right about my juice - I will feel amazing soon after - I'd better cuz' we are having a graduation party for my stepdaugher this Friday.......should be interesting! ![]() I wore my jammies in so I'll be ready to climb into bed with my hubby the minute I get home an watch some more Northern Exposure......ahhhhhhh....Heaven! Can't wait to hear from you! Erin ![]() Quote:
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Erin . |
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#9 | ||
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Member
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Hope your "juice" kicks in quick and you can enjoy it!! Take care of yourself!
~Kathy |
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#10 | |||
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Senior Member
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Hey there! Still feeling awesome? Have you read Brennan's posts? He is doing so well! It gives me real HOPE that 09 is going to be a great year!
![]() I went in and had my spray on tan......I must admit that I do look healthier - as well as thinner *happy dance* - still have to get the whole thing down though b/c I have some weird blotches on my skin......lol! Are getting to swim @ all? How are YOU doing? Big, big hugs! Erin ![]()
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Erin . |
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