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December 1st, 2012 #NChat

12/01/12

  05:40:00 pm, by The Dreamer   , 5123 words  
Categories: mSpew

December 1st, 2012 #NChat

  • stridesagainstN Q2. If you work or go to school, how do you get though each work/school day? Drugs/naps etc? #Nchat -4:15 PM Dec 1st, 2012
  • TheRealMikeHunt @Rrrapture Oh sweet you are the lady @stridesagainstN was talking about. #Nchat -4:15 PM Dec 1st, 2012
  • ColleenESolomon Would love to do more dx this year #Nchat -4:15 PM Dec 1st, 2012
  • lauramariee19 Just noticed that #nchat is happening! Woot! -4:15 PM Dec 1st, 2012
  • TheRealMikeHunt RT @catthoma: @TheRealMikeHunt I'm so excited for our new projects! :) Oh and we do actually put some good work in on running #nchat... that's no easy job -4:15 PM Dec 1st, 2012
  • LawrenceChen Guess now I'm waiting to see if there'll be a conference committee for next year's conference, and if I'll be part of it. #nchat -4:15 PM Dec 1st, 2012
  • catthoma A2. I don't. :) During the day is a lot of coffee and caffeine pills. And a lot of getting up from my desk... #nchat -4:16 PM Dec 1st, 2012
  • Rrrapture @catthoma I setup the #meetup group with keywords for #Narcolepsy, #disability #advocacy, awareness. I also posted links on N forums. #Nchat -4:16 PM Dec 1st, 2012
  • catthoma @lauramariee19 Yippee! You made it! :) #nchat -4:16 PM Dec 1st, 2012
  • stridesagainstN @colleenESolomon, sorry you have #narcolpesy, but you won't find a more supportive group of people! #narcolepsyfamily #Nchat -4:16 PM Dec 1st, 2012
  • catthoma RT @stridesagainstN: Q2. If you work or go to school, how do you get though each work/school day? Drugs/naps etc? #Nchat -4:17 PM Dec 1st, 2012
  • TheRealMikeHunt @LawrenceChen That's awesome dude! #Nchat -4:17 PM Dec 1st, 2012
  • Rrrapture @TheRealMikeHunt Hi! I suppose I am that lady;-) #Nchat -4:17 PM Dec 1st, 2012
  • LawrenceChen A2: I get a lot of leeway in time accommodations, using more and more stims, though the sleep attacks still sneak in too. #nchat -4:17 PM Dec 1st, 2012
  • TheRealMikeHunt @stridesagainstN @ColleenESolomon straight up homie! #Nchat -4:17 PM Dec 1st, 2012
  • catthoma @Rrrapture That's great! I'm going to have to pick your head- I don't know very many people here in CO w/ #narcolepsy #nchat -4:18 PM Dec 1st, 2012
  • sarahkbeau A2: College has killed my normal schedule...for now I let coffee maintain "normal" when my meds can't or when a nap is impossible. #Nchat -4:18 PM Dec 1st, 2012
  • stridesagainstN A2. I restrict carbs during the day. I take a nap in the afternoon and a stimulant if needed. Super bad days, I work from home. #Nchat -4:18 PM Dec 1st, 2012
  • catthoma A2. When I asked for accommodations at work I was practically shooed out of HR's office. I went to my desk and cried that day... #nchat -4:19 PM Dec 1st, 2012
  • Rrrapture A2: I get through each workday with a combo of naps, medication, and healthy, active living @stridesagainstN #Nchat -4:19 PM Dec 1st, 2012
  • stridesagainstN @ColleenESolomon Do you have #cataplexy as well? #Nchat -4:19 PM Dec 1st, 2012
  • TheRealMikeHunt A2. I eat and smoke as much as humanly possible then I take a nap, but thankfully I work from home #Nchat -4:19 PM Dec 1st, 2012
  • catthoma A1. Anyone interested in reading more about my awareness event, please go to @wakenarcolepsy 's blog! Raised $800+ for them #nchat -4:20 PM Dec 1st, 2012
  • catthoma @TheRealMikeHunt Don't forget drinking! Mmm beer! #nchat -4:21 PM Dec 1st, 2012
  • TheRealMikeHunt A2. I sincerely wish caffeine still worked on me. #Nchat -4:21 PM Dec 1st, 2012
  • Rrrapture @catthoma A2: I've had great success with #accommodations from employers. It's taken me a while to figure out how to do it. #Nchat #Nchat -4:21 PM Dec 1st, 2012
  • ColleenESolomon Yes. That's why I finally tried to find out what was wrong. #Nchat -4:21 PM Dec 1st, 2012
  • stridesagainstN @Rrrapture YES! Healthy, ACTIVE living is so important, yet I think a lot of #PWN think they are too tired to even go for walks. #Nchat -4:21 PM Dec 1st, 2012
  • TheRealMikeHunt @catthoma word! #Nchat! -4:23 PM Dec 1st, 2012
  • LawrenceChen I think I'm lucky in that I work for somebody that has his share of health problems and the difficulty of getting a Dx. #nchat -4:23 PM Dec 1st, 2012
  • Rrrapture @stridesagainstN I KNOW I'm too #sleepy for doing anything. I trick myself into getting up and out into a stimulating environment #Nchat -4:23 PM Dec 1st, 2012
  • LawrenceChen And, dealing with expensive meds, and meds that lose effectiveness, etc. #nchat -4:23 PM Dec 1st, 2012
  • catthoma @Rrrapture I think I saw her on an 'off day' for her. I don't really need any at this point. At least not yet. I play it off #nchat -4:23 PM Dec 1st, 2012
  • stridesagainstN I am thinking about starting a #running and/or walking club for people with chronic illnesses in my area. #Nchat -4:24 PM Dec 1st, 2012
  • TheRealMikeHunt @Rrrapture @stridesagainstN Sometimes I do jumping jacks, It rarely works. #Nchat -4:25 PM Dec 1st, 2012
  • LawrenceChen Though worry that they might not be formally documented accommodations.... probably I'm in the few that know the ADA policy here. #nchat -4:25 PM Dec 1st, 2012
  • Rrrapture @catthoma I've been there, it was stressful #Nchat -4:25 PM Dec 1st, 2012
  • TheRealMikeHunt Q2a. If you don't work, how hard is it to maintain a sleep schedule? #Nchat -4:25 PM Dec 1st, 2012
  • Rrrapture @ColleenESolomon That's cool about the #narcolepsy presentation - where and when? #Nchat -4:25 PM Dec 1st, 2012
  • TheRealMikeHunt RT @stridesagainstN: I am thinking about starting a #running and/or walking club for people with chronic illnesses in my area. #Nchat -4:26 PM Dec 1st, 2012
  • LawrenceChen I had joked that maybe I should take up running or something now that I have my N/C dx, but now its time to look at other problems. #nchat -4:26 PM Dec 1st, 2012
  • catthoma A2a. When I wasn't working- I had a harder time keeping a normal sleep schedule. Then again- having two toddlers doesn't help... #nchat -4:26 PM Dec 1st, 2012
  • ColleenESolomon Doing well with sleep at night. Not so well with naps. #Nchat -4:26 PM Dec 1st, 2012
  • stridesagainstN Q2a can also refer to keeping that schedule over the weekends since it looks like most of are in school and/or work. #Nchat -4:26 PM Dec 1st, 2012
  • ColleenESolomon I started jogging. Doing a 5K in January #Nchat -4:27 PM Dec 1st, 2012
  • LawrenceChen So I finally raised this problem I've been ignoring, and neuro says I'm showing pretty significant peripheral neuropathy in right leg #nchat -4:27 PM Dec 1st, 2012
  • catthoma RT @TheRealMikeHunt: Q2a. If you don't work, how hard is it to maintain a sleep schedule? #Nchat -4:27 PM Dec 1st, 2012
  • stridesagainstN @ColleenESolomon That's great! I'm also doing a #5K in January. Will it be your first? #Nchat -4:28 PM Dec 1st, 2012
  • stridesagainstN @LawrenceChen Oh, no! That's not good. #Nchat -4:28 PM Dec 1st, 2012
  • TheRealMikeHunt A2a. When I wasn't working I didn't know I had #narcolepsy, so I had no idea why I still fell asleep during the day #Nchat -4:28 PM Dec 1st, 2012
  • stridesagainstN @ColleenESolomon Do you keep a sleep journal? That helped me figure out how to best time naps during th day. #Nchat -4:28 PM Dec 1st, 2012
  • ColleenESolomon Yup, my first. Should be interesting. I'm slow. #Nchat -4:28 PM Dec 1st, 2012
  • catthoma @LawrenceChen What is the cause of the neuropathy? I've never found a doc that can find the source. I have it all over! #nchat -4:28 PM Dec 1st, 2012
  • Rrrapture A2a: I wake up at 5:45/6 every day. It can be brutal but it helps me stay on track. Melatonin or sleep pill at night #sleephygiene #Nchat -4:29 PM Dec 1st, 2012
  • ColleenESolomon No. Good idea though. #Nchat -4:29 PM Dec 1st, 2012
  • TheRealMikeHunt A2a, With no job I was so depressed. I thought the depression was causing me to sleep all the time. #Nchat -4:29 PM Dec 1st, 2012
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