I have lived with RA for 13 years. I will continue to support all the spoonies out there!

I want to add a spoon to my Facebook but I don’t have a Twitter account? How can I do this without signing up for Twitter?

I’ve just read the spoon.  Thank you so much for sharing.  I would love to give a copy to my family and friends.  How can I do that legally?

My mom actually kept a FREE wheel chair from me when I asked for one. Said I complained too much, I didn’t need it. Internet friends bought me one for my birthday that I’ll keep with me. I have IC and painful Pelvic Floor Dysfunction set off by changes in air pressure. Any time there is a cold front I hurt very bad. I need a wheel chair with a heating pad there on there on those days if I MUST leave the house.. being a college, student, there are days I MUST leave the house.

With summer coming I will look healthy and happy. Perhaps my PFD will even subside until my next IC attack. It could be a year, it could be 10 years, or it could be never, but it’ll always be over my head. Even if I don’t use that wheelchair it is a huge sense of security for me. IMO every house should have one on backup. Also, my friends got it for very cheap. Not quite free like my mom could have, but cheap, and I’m glad.

How do I add a spoon to my profile pic on facebook?

I have been a ‘spoonie’ for some years. My avatars have often worn changing color ribbons and/or spoons. The Spoon Story has circulated among my friends & family for many years, as I endeavor to educate others about ‘silent’ chronic disorders. I am dx’d Multiple Sclerosis (RRMS, now SPMS), Bi-Polar & Diabetes. For 30+ years I hid my MS dx. I was a consummate actress in the portrayal of a healthy wife, mother & professional. Even my husband was not fully aware of just how difficult my day-to-day existence was. With the progression of this ‘MonsterSilence’ (nearly full-time cane usage & part-time wheelchair), more people acknowledge that there is something to some of this, at least.
However, I was recently taken aback by the wife of a fellow MS’er with whom I was conversing from my wheelchair in a crowded store. (I often stumble in conversation, searching for words, other cog fog issues. This occasion was no exception.) As we were saying goodbye & her husband had rolled away, she smiled brightly and said, ‘Well, at least you don’t look sick!’. I was dumbstruck!! WOW! Ignorance prevails. ;(
Back to educating, I suppose. Alas, it is an ongoing struggle!

How do I remove the spoon? I didn’t position it and size it first…

Thanks so much when I get down . I look at this page But you don’t look sick. I know that I am not alone struggling each day.

Thank you for building such a positive means of support for those lost in the shadows of invisible illness. I look forward to building a positive support system, in reality I have no one who understands. Each day I hear, “I don’t think your as sick as you say you are, you look fine to me”..

Ulcerate Colitis diagnoses (2001)

Rectal Prolapse (by 2002) worsening at current (2010)

Failed Immune System (2002-2003) worsening (2010)

Chronic MRSA infections (2004)

Additional infection (2004)

Terminal diagnosed (2004) progression has slowed but the label of death will always be on my head.

Sex: Female
Current Age: 27
Location: Kentucky
Help: none
Support: absent

Twitter: http://twitter.com/h0llywoodwh0re (mind the zeros)

I have lupus also fibro. and djd and ddd.

An incredible story! You really have conveyed, as much as possible, what it means to have lupus, or any of the many disabilities. You’ve done a great job of making me think more about those invisible disabilities and how many people suffer with them, often in silence. You’ve added to my understanding. Thank you for sharing your story.

I am A Spoonie !!

Thanks for being a sane voice for everyone who struggles !! 🙂