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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-16-2008, 02:55 PM | #51 | ||
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09-16-2008, 02:57 PM | #52 | |||
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You never know! Maybe...........Wouldn't that be great? I for one, would have a family compound...............any thoughts?
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09-16-2008, 03:13 PM | #53 | |||
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Hey girl! I hope you are feeling better today! I was working earlier, but came home early - I was a little tired! Still, I've gotten quite a bit of work done thse few weeks
I am totally doing the t shirt thing! Maybe people will think I'm weird, but I"ve never really been swayed by what other's think. Plus, if it will help one person,then it's worth it! I'm going to have bumper stickers made as well - what the hey - if I'm going to do it, I may as well go all the way! People always ask about my scar anyway, so why not? I'm actually kind of proud of it! My hubby mentioned plastic surgery the other day to have it removed, but there is NO WAY I'm going under the knife again...........It's not all that bad anyway (my scar, not going under the knife)....... Don't worry about the testimonial - it was silly of me t ask anyway, especially since you've been feeling a little tired recently...........I'm going to go take a nap! Take care! Erin Quote:
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09-16-2008, 03:42 PM | #54 | ||
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Erin, Please let me know when/if you do get bumper stickers etc done - I'd love to buy a couple for my family! The leg warmers sound interesting too !!
Hope everyone is well - I've had a brilliant month and can't wait to go see my neuro on Monday! I'm sure he'll let me reduce my steriods further (GOODBYE moon face). I'm so thankful for all my good days, espeically considering how terrible I felt this time last year! I'm hoping the best for all of you too. Take care, ~Kathy |
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09-16-2008, 05:29 PM | #55 | |||
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Kathy,
I'm going to get on it this week (if all goes well).....I for one cannot wait to show them off, so be prepared for new pics....... What are @ steroid wise? I'm still @ 20 mg. a day, but am slowing being weaned off them in favor of Cellcept - @ least that's what my neuro is telling me......I'm a little nervous about being taken off them completely, but cannot wait for my "moon face" to go down........I used to take 80 mgs. a day, so 20 is a HUGE improvement.........I'm also going to Dallas this weekend to see my Grandparents and CAN'T WAIT! MY Grandma is my favorite person - bar none! She always makes me feel better - no matter what! I am so happy you are feeling better! That is fabulous news!!!!!!!Good luck with your neuro - goodbye moon face!!!!! Take care! ERin Quote:
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09-17-2008, 12:33 AM | #56 | |||
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Hi Erin,
glad you could go to work!! even if you did have to come home. No it wasn't silly of you to ask about the testimonial!! Wish I was feeling alot better so I could do it for you! I went into the nearest big town to me with my big sister yesterday, to do grocery shopping, it was the shortest shopping trip we've had for ages. We usually spend the whole day in there, but only spent a few hours, which I'm glad of. Today I feel I've been run over by several buses, not to mention feeling rather sick, and wonder is it the cellcept(does it make you ill?!) or something I ate, or just a mix of everything. Ahhhhhhh very frustrating. But I did have a good morning, my big brother helped me pick up a loung from my Aunty, so now I have a nice new(well second hand actually) lounge in my loungeroom, so I can lie down and watch tv and read at night instead of going to bed. YAY Got your message to be put on your friends list, thankyou, but not sure what I did, hope i pressed the right buttons take care redtail |
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09-17-2008, 09:43 AM | #57 | ||
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09-17-2008, 10:44 AM | #58 | |||
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Do I detect a hint of jealousy? You know you're my other favorite person
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Erin . |
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09-17-2008, 10:51 AM | #59 | |||
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Yep! Going to the office really felt GREAT! I'm home today, but that's OK cuz' my hubby is having a TV crew come by on Friday to video our house for "Tips for Staging" - did I mention he's a realtor? Now I've just got to make sure our house is ready - I hope it looks OK - my OCD is really kicking in today - just hope my energy keeps up...........I HAVE noticed some problems with my stomach since the cellcept, but thought it was just me. Last night I was so weak that I started getting scared again - will this fear EVER go away? Took a nap and then went to bed early, but woke up tired again, but I do have a sinus infection, as well as two teeth that need root canals, but most dentists won't have anything to do with me..........I'm the bane of most dentists here in SA.........I hope you are feeling better today and enjoying your new lounge..............Talk to you soon!
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09-18-2008, 12:46 AM | #60 | |||
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Hi Erin,
hope cleaning up your house hasn't left you too exhausted!! Yes the fear goes away, well mine did, now I just get frustrated!! Like today woke up feeling like I had run a marathon, then that spiralled into feeling nauseous,and totally off my face(no I don't do drugs, not illegal ones anyway) I rang Mum to take me shopping(how imbarrasing is it to be 36 and have to ask you 68 yo Mum to take you shopping?!?!) I shuffled around to do my shopping, feeling sooo unwell and sick. I came home and after about an hour felt so much better????????????? I've even managed to make a caramel slice and start making a peppermint slice to take to my Aunties place for the weekend, I know tomorrow I will be exhausted, but hey its worth it. At the moment I'm feeling great headwise but my body is a bit sad, cant type eyes closing, but I know it will pass. When I was first diagnosed I was terrified at every little set back. I collapsed outside and it took me 20 minutes to drag myself inside, this really scared me. I'm not that bad anymore, but if I have to struggle out of bed I know that a good rest should put things right. In time you will get to know your body and its ups and downs, but always remember not to ignore any signs that may suggest you are going downhill. Sorry I've woffled on a bit, hope you are having an OK day take care redtail |
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