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TOPIC: oh crap

oh crap 4 years 10 months ago #46694

  • eklein
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Three mornings in a row without new pain. I'm stressing about the trip and the job and sleeping a little less, haha I guess that is working for me not against me.

Well this has been a very eye opening several weeks. It's a weird bad thing to feel mostly ok at night but know I'm going to wake up feeling very very bad. And to face that I'm not done with this stupid chronic thing.
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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oh crap 4 years 10 months ago #46696

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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  • Karma: 11
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Hopefully, it doesn't last long for you. It's a hell of a life when you feel that way for the rest of your life.

I wish you the best, Erica. Lots of changes coming your way!

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oh crap 4 years 10 months ago #46697

  • eklein
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Sandi - many years ago I was dating a guy I did not like very much but he liked me. I was not being assertive in telling him I didn't want to see him so after we'd have dinner I'd say I'd call him and I wouldn't. He would eventually call me all mad and ask why I hadn't called and I'd say 'who said time was up?'

So I was a jerk but I like that concept of 'who said time is up?' I mean, it's not over until you know who sings. So things can still change for the better. It is not necessarily the rest of your life the same as it is now.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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oh crap 4 years 10 months ago #46700

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2342
Erica - I keep waiting but it's been 10 years now and things just keep getting worse. I don't see things getting any better, but I do like your thoughts about time being up!

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oh crap 4 years 10 months ago #47005

  • eklein
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Sandi - is this a lupus thing? A couple of nights recently I just couldn't get warm. My skin didn't feel cold to the touch, I didn't have a headache or a fever, but I was just feeling chilled to the bone. It kept me from sleeping in fact it woke me up. My room was chilly but I'm used to that, and typically once I get warm I immediately feel too warm. But last night for example I ended up with 5 blankets and finally got warm after what seemed like hours and then I stayed warm and comfortable. So that was really weird. I've been all done with menopause for several years now so it's not that. And I was chilly during the day but it didn't really bother me.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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oh crap 4 years 10 months ago #47008

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2342
Could be. I get that way all the time....my temperature gauge is off. It could also be a thyroid thing.

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