I'm so glad that you are improving. I'm still sending my most positive vibes your way.
BTW, I suggest that autoimmune is the rallying cry of those that walk where they need to go. These folks can always snicker when they walk past a broken down vehicle and say "Ahh tow immune am I"
Posts: 2022 | Registered: Mar 2004
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Yay for being out of the hospital! Yay for having computer access! Yay for being up and about!
(the only problem is that you got back here so quick I haven't had a chance to send you a card yet! )
Posts: 32919 | Registered: Mar 2003
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Well, I hope the old address is still right because I mailed something today before she posted. Posts: 9871 | Registered: Aug 2001
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Thank you all! Unfrtunately, my aversion to smilies just sent me back into a terrible tailspin. I will have to remain in my rom with the Oops-I Crapped-My Pants woman for the rest of the day now. Ha ha.
I can't believe how callous a group can be to actually start making PUNS the first moment I am back. I thought I was pretty ADEMent about how seriously I would be taking life now. Really, pun team, couldn't you have a little patients?
Dag, I LOVE my book, and it is giving me some great down time. I can read again which is HUGE, and my dad got me "Angels and Demons" which I enjoy greatly. I will be needing a series suggestion in a day or two. Someone suggested Rhapsody??
Thank you again for the warm welcome. As far as what ADEM is, they are also calling it Guiallaume Barre or something. Maybe Sara knows more about t. It is something which attacked my nervous system like encephalitis and menengitis.
Posts: 10890 | Registered: May 2003
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Spaulding Rehabilitation Program at Park View Specialty Hospital 1400 State St Springfield, MA 01109
Posts: 10890 | Registered: May 2003
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I have a medical program with some good information. I can email it liz if you were interested. Here's the general scoop:
Acute disseminated encephalomyelitis — Acute disseminated encephalomyelitis (ADEM) is classically described as a uniphasic syndrome occurring in association with an immunization or vaccination (postvaccination encephalomyelitis) or systemic viral infection (parainfectious encephalomyelitis). Pathologically, there is perivascular inflammation, edema, and demyelination within the CNS. Clinically patients present with the rapid development of focal or multifocal neurologic dysfunction.
Posts: 1990 | Registered: Feb 2001
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see, I was going to listen to Kayla's advice and not send something right away. But I can still send you a card, even though you're posting, right?
at Liz for getting better so soon
Posts: 5700 | Registered: Feb 2002
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Liz are you still going to be at the rehab place for a month? (I'm contemplating sending you something that according to the internet will take 7-10 days to arrive and I need to know when the window will close.)
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Ok Elizabeth, Farmgirl and I just went in together to send you something. However since I ordered it through Sams's Club, it didn't allow me to send a message along with it which is why I'm notifying you here. I sent it to you at the hospital address. So you should get it in 7-10 days.
Keep in mind that we took your "not into morbid flower arrangments" request quite seriously.
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If I wasn't so completely broke, a local florist does a wonderfully tacky flower arrangement with mylar balloons and a large yellow smilie face vase.
Bright like "see this from two miles out" kinda bright.
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YAY FOR NOT BEING DEAD! YAY FOR NOT BEING A ZOMBIE!!!
But seriously, I'm glad you feel better. I'd make puns, but mine are so terrible that I've been Barre'd from making them anymore. Posts: 4816 | Registered: Apr 2003
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Icarus, Yes and THANK YOU! That was so sweet. I have him sitting on top of my chair and he makes everyone laugh.
The doctor came in yesterday and said, oh by the way, you don't have Guillaume Barre. I was like, well, I did not THINK I did. There have been so many doctors dealing with me that I just sort of blink and say yeah, whatever. My husband and dad have been fielding reality for me for the most par. For example, I just realized I was in the hospital for two weeks when I have been telling everyone one week. I am just getting to the idea that I was maybe seeing certain people for the last time and that that was why they were there. That part is still at arms length, but getting closer. It is a hard one. But as mentioned, I did survive, and I am lucky to be here.
I did recieve a few anonymous, unsigned items that I would like someone to fess up to. Some music from Fort Collins. Speed?
As for mail, please keep sending it! It is so wonderful to receive. The best is just to send it home, I think. I am not sure how long I will be ere,
Liz O'Brien 180 Metacomet St. Belchertown, MA 01007
Even just a note is great. I am actually going to start writng becsue it is one of the things that is hard. I write like a first grader. I have a whole ne, deeper than ever empathy for my students with writng disabilities, let me tell you. Liz
Posts: 10890 | Registered: May 2003
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Hey, I'm really happy that you got my CD. I didn't know how long it would take. Yeah, I wanted to save some time, so I just had it shipped directly from the seller, since that's the only way to get that CD. That's why there's no note. It's a live album by the best local band I've ever seen in person, and every time I listen to it now I think of you. Hope it makes the boring recovery days more exciting. Tell me what you think of it.
I'm so glad they've let you back on line. Nice to see you again.
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Elizabeth, your post makes me want to cling to the hem of your skirt. This is really scary. I'm so, so incredibly glad you're getting better.
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Thank you so much, Speed! I am going to lidten to it tonight. I have had some bettery issues with my walkman.
Kat, thank you. It is really just strting to sink in and I think I am going to need more support tha I tjought. The physical therapy is hard. I used the walker today and a cane, and it felt good to walk bu tso attrange. It was like I was learnig a wole new body. I look around the rehab and realize how far ahead i am, yet I am atill relearning some very basic things. For instance, peeing will never again be taken for granted.
Posts: 10890 | Registered: May 2003
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Oh, I totally blocked that. My God, my handwriting was so bad I actually apologized for it in the note! Posts: 9871 | Registered: Aug 2001
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I hope she can decipher the chicken scratches on the card I sent. I included a pun and I'm sure it's even tougher to translate with poor penmanship.
Posts: 2022 | Registered: Mar 2004
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Wow! I am so glad to see you posting, Liz. What a scare!
I'm also glad you don't have Guillian-Barre (sp?), though I don't know much about ADEM. My stepdad has G-B, and even though he had a remarkable recovery after plasmopheresis, he has never really regained total feeling in his hands or feet, and has trouble sometimes picking up things.
I would not have wanted you to have a similar affliction. Here's praying you beat that ADEM into submission and are right as rain quickly!
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O h my goodness! I just got a pile of Hatrack cards yesterday. Thank you so much! And thank you, Bob and Dana for another muscal mystery cleared u-p! Steve is bringing the battery recharger today. I was not even getting through one cd without the batteries running out. I can't wait to listen to both cds.
I am practi=ceing writing, and will try to write back. I saved the addresses.
Again, thank you all. I feel better and better each day. My kids came last night and we had dinner and watched a movie. It was the first timwe they saw me looking normal, and in clothes rather than the gd johnnie. I even got to be the bad parent by giving my daughter crap for not clipping her nails when I asked her LAST Sunday. I assured i I could still be bossy from here. and she laughed. I think she is going to giver Steve a bit of a run for his money. Before I got sick Steve was working almots every night, and I know how they can work the nerve of one parent. My respect for the single parent is way, way up there. Having another person on your team is so helpful.
Posts: 10890 | Registered: May 2003
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Well I got a thing today saying that the package has been shipped UPS ground. I'm sorry I sent it to the hospital and I hope it gets there before you leave. Knowing UPS, it will probably get there by Friday. However, if it does end up somewhere odd I hope they open it cause it would probably brighten up the place.
I had to abbreviate the address a bit and couldn't add c/o So this is how the label came out <grin> Elizabeth O'Brien SpauldingRehab at ParkView Hospital 1400 State St SPRINGFIELD, MA 01109
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at Liz for getting better so soon
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