January 2011
45 posts
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Sunscreen Helps →
Apparently this counts as “news” but this article is about how sunscreen helps to reduce the risk of lesions in patients who experience photo-sensitivity. So, if you develop lesions on your skin as a reaction to UV exposure, protecting your skin from those rays will obviously be a good idea.
Sometimes, people are being paid extreme amounts of money to use common sense.
Either way,...
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Meditation
I posted a while ago about certain holistic treatments that have stigmas attached to them. (here)
I wanted to point out that certain alternative treatments that people look down on have actual science behind them, and are not just placebos or hokey guess-work.
I never mentioned meditation in that list because I sort of felt that the science behind meditation seemed flakey. But I’m a...
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A Nifty Device from thinkgeek.com →
I’ve been a fan of thinkgeek’s merchandise for a long time, and today my good buddy Karl showed me this link for a device he thought might be helpful for people with Lupus (or any kind of photosensitivity, for that matter).
It detects UV intensity and lights up different shades of purple according to how much exposure you’re getting. The darker the shade, the more intense the...
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Tattoo
When I was young, I admired and was infatuated with tattoos. I still am, but the difference is that back then I had a much higher disposable income. Now, I’m pretty broke most of the time. The genius that my mother is, she told me that if I had Lupus and got a tattoo, I could die.
I seriously believed her for like, four years. All along she was just brilliantly tricking me out of...
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Alopecia (Hair Loss)
I posted a little while back saying that I was having a “bad day”. It sort of turned into a bad couple of days. One symptom of Lupus I notoriously experience is hair loss. I’m extraordinarily lucky because I’ve got a seriously thick head of hair on me, so the only time I’ve ever had *noticeable* bald spots was when I was younger and newly developed Lupus. But...
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Support
I go through Lupus related blogs online from time to time, and I can’t help but make observations as to why we gather the way we do on the internet. There are a few blogs out there that are geared toward awareness, spreading information to anyone who might need or want it, as well as attempting to familiarize the general population with our ‘invisible’ and misunderstood illness....
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Lupus, What Causes It?
I’ve seen a lot of shocking misinformation floating around, not just on the internet, but on television and in the mouths of my peers in relation to Lupus and what causes it. I’ve heard a Doctor on a daily news program say that a person cannot develop Lupus. I’ve had lovers freak out because my genetics are too risky for breeding. I’ve had much less educated people...
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Gluten Intolerance, misconceptions
I’ve been reading a lot about Gluten intolerance lately, because, well…
Hold up. Let’s start over.
When I was 14, along with being diagnosed with Lupus, Rheumatoid Arthritis, Raynaud’s Phenomenon (oo00oo0o0o0o!), I was also diagnosed with a Gluten Intolerance. My doctor (as I mentioned before, she is a brilliant woman and I am so grateful) decided to test me for food...
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Raynaud's phenomenon.
fuckyeahmedicalstuff:
What is Raynaud’s phenomenon?
Raynaud’s phenomenon (RP) is a condition resulting in a particular series of discolorations of the fingers and/or the toes after exposure to changes in temperature (cold or hot) or emotional events. Skin discoloration occurs because an abnormal spasm of the blood vessels causes a diminished blood supply to the local tissues. Initially, the...
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Toni Braxton is thinking about appearing in... →
And you know what? I hope she decides to do it! For a few reasons. One being that she’s not Playboys usual go-to (scrawny, blonde) and it’s always nice to see real looking beautiful women being revered as sexy. And two, Toni just came out about having Lupus recently. I, personally think it would be hella cool to have a famous person with Lupus seen as something beautiful and sexy...
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What Lupus Looks Like →
A fellow Lupus blogger on Tumblr had herself a little bit of a project recently and I wanted to share it. I think it was a pretty sweet thing she did, collecting photos of other bloggers living with Lupus. And if nothing else, the link above will at least lead you to pictures of some pretty ladies. (And one awkward picture of me).
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Donate to the Lupus Foundation →
I know that right now, for many of us, donating money is something really hard to do. But there are other, overlooked ways to help that are just as important to the Lupus cause.
I just got off the phone with my mother, and she reminded me that when I moved out, I still had some clothes and things that I left at the house. Most of those things got left there because they just weren’t...
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But do you know who DOES have Lupus? ... →
And isn’t she just awesome? This woman made a declaration in a moment of success-not pain- about her having Lupus. “This is what Lupus looks like!” is what she said as she accepting her award. She’s a Grammy winner, and an astounding person. Not to mention her voice blows me away.
This video of her speech is perfect.
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I can't stress this enough, but Lady Gaga does not... →
So please, just stop.
Did anyone even hear the interview she gave? I’m sick of reading about how she’s our “hero” for being so strong, and for being in the limelight with such a life-threatening illness. I love Lady Gaga, she’s a cool cat. But the interview went like this. Larry King asked her if she had Lupus. She said NO. It runs in her family, but she has no...
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Benlysta, the upcoming Lupus drug →
HGS and GSK are working closely together to develop BENLYSTA (belimumab) as a potential new treatment for antibody-positive systemic lupus erythematosus (SLE) and other autoimmune diseases. SLE is a chronic, life-threatening autoimmune disease. Approximately five million people worldwide, including approximately 1.5 million in the United States, suffer from various forms of lupus, including...
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Bad Days, what do you guys do?
So, I’m having what is called in the Chronic Illness community as a “Bad Day.”
We generally use that to describe a day when you are not in a full flare or in the hospital, but just a day when your symptoms are worse than usual. Enough to affect your day, and enough to keep you from your usual routine.
And I was just thinking about what I would do with this day that...
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Group decides it's OK to use hormones and surgery... →
Don’t. Don’t try to justify. You can’t. There is no justification for dehumanizing someone to the point of removing healthy organs and their ability to grow. You decided to become parents. It’s a responsibility. You decided to fully create a life and now that life exists as a human being.
Anyone justifying this fails to see Ashley (or any other disabled person) as a...
Anxiety and Depression Update
I forgot to edit in the herbs helpful for Depression and Anxiety into my last post at the end. What a jerk! Anyway, my last post has been updated.
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Depression and Anxiety
Several mood and anxiety disorders are more common in women with lupus than women in the general population, according to results of a study published in the journal Arthritis and Rheumatism.
I think most of us with brains can assume that having a chronic/severe illness definitely affects your chances of developing mental or emotional problems, right? Right. But I worry sometimes about...
Sharing is Caring
As I’ve made pretty aggressively aware, I’m pretty skeptical of anything that seems attention hungry or pity-party-ish concerning Lupus, and that I’m weary of other Lupus blogs because of this reason. But @stuffsickpeoplehavetoputupwith has a great tumblr blog going about chronic illness awareness and I want to link to her latest post - a response to one of her readers, that I...
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Erythematosus
I just had this memory strike me as interesting and I’d like to share it. When I was diagnosed I was about 14 years old, and well, kind of an idiot. Or at least pretty aloof.
Anyway, that word? Erythematosus? Took me a severely embarrassingly long time to learn how to pronounce/spell. I’m pretty sure I might have told some people I had Systemic Lupus Earietheemus. Or something...
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Reflexology →
Hey guys, I just got back from a Reflexology appointment and I figured I might try to find some good information on it to put up.
That link is definitely a good place to start, it even has a pretty coherent chart to follow.
I thought I’d also get some thoughts off my chest about Reflexology/Acupuncture/Holistic Medicine while I’m at it. See, I know a lot of skeptics lump those...
Last Post About Spoon Theory, I Promise ;) →
chronicallyscrewed:
itwaslupus:
chronicallyscrewed:
itwaslupus:
I don’t know, maybe I’m the only person with Lupus with any self-respect, but this Spoon Theory business has GOT to stop. For those that are unfamiliar, let me share with you this piece of crap, poorly written, masturbatory pile of self-pity and attention-whoring.
…
I don’t have lupus, but I have a chronic...
Anonymous asked: Hey, I've yet to be diagnosed so I've been reading some material online and I haven't really found the answer to a question I had. When you first have the symptoms for lupus, will all the flare-ups after it be similar in severity? Or is there too much variation to say?
(I would ask a doctor, but I prob won't get my first meeting with the rheumatologist for a few...
(I would ask a doctor, but I prob won't get my first meeting with the rheumatologist for a few...
ms-mj asked: Also, I've done a q&a on Reddit as well! From a coupla years ago: http://www.reddit.com/r/IAmA/comments/9mfqu/iama_25f_who_is_made_severely_physically_ill_by/
ms-mj asked: Hey - I can't reply to your account yet, but I wanted to respond to your comments about House. I completely understand your post, and I know where the joke comes from. I think some of the frustration of hearing that phrase repeated over and over again, is that it's mostly by those who don't know or care what Lupus is. The mainstream public is too self involved and ignorant, in my...
judas-o asked: I love your outlook on lupus, or, really, chronic illnesses in general. I haven't been diagnosed with anything yet (right now my doctors are trying to convince me that it's either Chronic Fatigue Syndrome or my vegetarian diet, even though I make sure that I get all the vitamins I'm missing), but my biggest suspect is lupus.
Earlier this year I had to convince my...
Earlier this year I had to convince my...
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I did a Q and A about Lupus on Reddit, if you're... →
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More on Spoon Theory, rebuttal →
chronicallyscrewed:
itwaslupus:
I don’t know, maybe I’m the only person with Lupus with any self-respect, but this Spoon Theory business has GOT to stop. For those that are unfamiliar, let me share with you this piece of crap, poorly written, masturbatory pile of self-pity and attention-whoring.
…
I don’t have lupus, but I have a chronic illness/disability. I don’t understand 100% and am...
slowlysaidthesloth asked: I love the blog (and the name!)
I agree with so many points you've made here. Thank you!
I agree with so many points you've made here. Thank you!
todoeralindo asked: hello. i am glad i'm not the only lupus patient who found the spoon theory not only poorly written, but not particularly enlightening. i had to read it twice because afer i read it the first time, i thought, "hmm, i must have missed something, because everyone else seems to think this makes an amazing point," but no, after reading it again, more carefully, i realized it actually...
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Lupus Search Comparison 2001-2011
So I wanted to illustrate how much we’ve learned about Lupus since I was diagnosed 9 years ago. When I was diagnosed I remember how strange and foreign it sounded, and how no one I knew had ever heard of this weird-sounding illness. Now, the internet is littered with information both relevant and irrelevant, and plenty of people are throwing their two cents into the mix.
In other words,...
You want to feel better? →
Try listening to your body a little bit more before jumping to drugs. Your Doctor, though they can definitely help in serious times, is being sponsored by certain drugs. Especially when it comes to pain medications. Those are always a big sell. I’m not saying that you will never need drugs. You will. I do. We all do. But what I am saying is that your body is trying to tell you what...
idoodle-beta asked: Hi, I've got Lupus too & I couldn't agree with you more. It's good to find some rational thought among the self pitying new age bullshit I stumble upon everyday. They can take their spoons & shove them up their arse!
Leigh :)
Leigh :)
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Spoon Theory Garbage
I don’t know, maybe I’m the only person with Lupus with any self-respect, but this Spoon Theory business has GOT to stop. For those that are unfamiliar, let me share with you this piece of crap, poorly written, masturbatory pile of self-pity and attention-whoring.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
If...
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Guidelines
What you will see in this blog:
Links to Lupus related articles and new advancements
Lupus-relevant life experience as a means of providing context and realism
Advice regarding living with Lupus
And probably frustrations with the horrible Lupus-content found elsewhere on the internet
What you won’t see:
me crying about how hard my life is
Do:
Ask questions about the illness,...
Introduction
Hey, internets.
I’m starting this blog in a moment of rage. This rage was induced by stumbling upon yet another link in the endless circle-jerk of self-pitiful Lupus blogs.
Since, aside from official medical blogs, that’s all the Lupus Voice blog directory (http://webpartner.com/LupusVoice) has to offer, I decided to write a personal blog that expresses personal thoughts and...