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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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Hello all! Just want to vent today!
Bad, bad day! I went in to have my line flushed and was barely able to walk the 1000 ft to the front door - had charlie horse pains this morning and was really, really weak.........hating MG more than ever today! ![]() I know the charlie horse pains are b/c I haven;t taken my potassium in a few days - no idea how imortant it was to take EVERY day - even though I am also on prenatal vitamins - pred is just so flipping hard on the body! I'm also going to take a leave of absence for a while - until I get stronger - I just really hate being housebound all day......but I need to rest until I am stronger! I cannot wait to see Dr. I on Monday and see what he says. My big "fear" is that he will make me have the plasma exchange AGAIN - hate that one - they always "knick" my nerve - add to that the fact that my platelet count is high, so I scar internally and they really have to dig hard to get through it and you have one ticked off lady - I was fighting with the guy last time as he was placing the line - only me! LOL What a junk day! *sigh* Erin ![]()
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Erin . |
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#2 | ||
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Junior Member
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I'm so sorry that you are going through this, especially the thought of plasma exchange. I have had the same experience, so I know where you are coming from. You are not alone. Hopefully when you see the Doctor on Monday, there will be other options, please keep me posted. Until then, you are in my thoughts and prayers. Dorothy |
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#3 | ||
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Erin,
I feel for you. Those crappy days are the worst. I hope that today is a little brighter for you. Prayers are sent your way. ~ Mel |
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#4 | ||
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Hi Erin,
I'm sorry you had a rough day. I hope today is better. Talk to ya soon. Kristie |
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#5 | |||
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![]() ![]() Yesterday during my Iron Infusion, the nurse had a problem with my vein. Call me uptight, ****, or whatever, but, I don't care to have them dig around, as though they're digging for gold in my Arm. The last time, She bent the needle, how is that possible?? When she pulled it out, it looked like a tiny fish hook....um..Not good, and never ever had that happen to me before!!! It wasn't fun getting the needle out either. I joked, that I knew I needed to get a lot of Iron, but bending of a needle may mean enough is enough... And for some reason, been in the mood to see the movie "Iron Man"...lol Sorry sick person humor.. All kidding aside, I do understand what your feeling, and it is soooo frustrating. Hang in there, better days are ahead. Much Love Lizzie |
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#6 | ||
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Oh Baby Girl! I'm sorry you're having a rough one! You're not having any breathing issues are you?
I think it's a good idea to take a leave and let your strength build up. Just remember not to go too hard as soon as you feel stronger, ok? Just keep telling yourself to be patient and let it REALLY build up - then pace yourself afterward so you don't use it all up. I hope you don't have to have the plasma.. I have really bad veins too and boy can I identify with you and Lizzie on the needles. When I got my aneurysm coiled that nurse dug & dug - I had a huge hematoma on my left hand. It stuck up about 2 inches and my whole hand swelled and was so purple. Next time in, I'm gonna tell them someone else needs to sink the needles. Very few are able to hit me right, then I often blow the veins - haven't had to have plasma myself yet and I honestly don't know if my veins would hold for it. Just keep deep breathing and looking ahead to that day when you don't have to go through this all the time to feel good for a while! It'll come. Lot's 'o Love to you!
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Becky |
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#7 | |||
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Senior Member
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How are YOU hon? I think I wold have knocked out the "great" nuse that bent your needle - still have no idea how on earth that happened!
I am the same way about having people over - I just don't want them to leave - I hate being stuck here, but belive it is best for the time being @ least! You have a GREAT sense of humor! I love it! ![]() My pastor stopped by again otday and prayed with me - it felt so great! He really is amazing! He seems to "know" when I need prayer most! When do you have your next infusion? Are you OK? My thoughts and prayers are with you! Big, big hugs! ERin ![]() Quote:
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Erin . |
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#8 | |||
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Senior Member
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How are you hon? Are YOU feeling better? How about your little ones and hubby? Any new news on the medical front?
Today has been much better! Can't wait to hear from you! Erin ![]()
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Erin . |
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#9 | ||
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I'm not feeling any better, actually now I have some kind of stomach bug making me vomit, ugh what fun. So far it's only been once so lets hope it will just go away with that. David had it on Friday and he would vomit about two hours after any time he ate or drank. Emily started vomiting this morning and Dan thinks he's getting it too. At least it was only a 24 hour thing. I have to get up and make David breakfast and find something easy for me and Emily. Talk to ya later Kristie |
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#10 | |||
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Senior Member
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How are YOU? Are you feeling stronger yet? Have you talked with your doc about your eyes? How is your chest?
Today is a lot brighter! Mike and I went out of town to a little b & b right outside of San Antonio, where I slept mostof the time - that was wonderful! No kids! No dogs! Wonderful! Big, big hugs! Erin ![]()
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Erin . |
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