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Friday, 02 December 2011
Group Admins:
  • Eko
    This is the most succinct explanation of living with chronic illness I've read. I'll be sharing this with my doctors. Thank you!
    208 days ago
  • Ha, ha.
    • Ha, ha.
    415 days ago
  • I always reserve one spoon to brush my teeth. My worst days, that's all I've got to give. But at least my teeth are well cared for.
    462 days ago
  • Replied to the The Spoon Theory
    Tell us how you use your "spoons" join to comment.
    464 days ago
  • Are you a "spoonie" tell us how you use your spoons?
    • Are you a "spoonie" tell us how you use your spoons?
    464 days ago
  • Hi, my name is Robyn . I've had Fibromyalgia for 5 years. This year was different though pain was worse. I started getting crazy infections, like internal shingles, infected salivatory glands (mumps). Then the Malar rash and Reynauds appeared. My PCP and Psycatrist confirmed SLE Lupus and sent me to Rheumo, who also confirmed. And gave me handicap plaque. Due to severity of photosensitivity and weakness, dizziness, confusion sometimes blacking out it was causing. So he ran a ton of labs, as usual my SED rates are off the charts, my mono #@# as well. I've been on B-12 injections for a year, and my body quit producing Vit D about 6 months ago. Also about 8 months ago after 3 weeks of Seroquel my Chlosterol shot to 323 so I've been on Lipitor ever since. Also running fevers whenever I go out for any amount of time. Vision and memory impairment becoming severe. So upon following up with the Rheumo for my labs last week, he still says I do have SLE Lupus. But will not write it on paper because my ANA is negative.and that he would recheck me every 3 months. 2 days later I ended up with a massive kidney infection that spread to both kidneys. And also in the frustration of not wanting to deal with that doctor again I went to a walk
    528 days ago

Support group for ”Spoonies” and their families.

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Last replied by siteadmin on Friday, 22 November 2013

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