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  • Personalised medicine for lupus

    Lupus News From Medical News Today
    21 Aug 2014 | 12:00 am
    Medical researchers have used DNA sequencing to identify a gene variant responsible for causing lupus in a young patient.
  • Williamson awarded research grant

    Lupus News
    20 Aug 2014 | 11:07 pm
    The grants will be used toward investing in the next generation of lupus researchers.
  • Biosimilars and Biobetters experts share their opinion on the market in a series of interviews

    Lupus News
    22 Aug 2014 | 5:42 am
    SMi reports: In preparation for the 5th annual Biosimilars and Biobetters Conference, SMi has conducted a series of interviews with leading industry experts LONDON, ENGLAND, August 22, 2014 / -- As the global market for biosimilars gets …
  • Take a Lead for Better Lupus Treatments! Learn how at NYC’s first Lupus Trials Fair

    Latest News from the S.L.E. Lupus Foundation
    5 Aug 2014 | 7:53 am
    Clinical Trials for Better Treatments Today and a Cure Tomorrow Take a Lead for Better Lupus Treatments! Learn how at NYC’s first Lupus Trials Fair: Find out how you can help bring lupus closer to a cure by taking part in clinical research. Join the Lupus Research Institute and the S.L.E. Lupus Foundation at the first Lupus Trials Fair September 13 from 10:00 – 2:00 p.m. at the Roosevelt Hotel in Manhattan.  read more
  • We have reached OVER 119,000 likes on our facebook page! Come join our #spoonie community!

    But You Dont Look Sick? support for those with invisible illness or chronic illness
    11 Aug 2014 | 6:47 pm
        WHoooo HHhhoooo!!!  Do a happy Dance! We have reached OVER 119,000 fans/ likes on our facebook fanpage! Thank you to all our readers, friends, and “spoonies” for making every part of our online community as supportive as it is. You guys are amazing! If you haven’t “liked” us yet on facebook come on […]
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    But You Dont Look Sick? support for those with invisible illness or chronic illness

  • We have reached OVER 119,000 likes on our facebook page! Come join our #spoonie community!

    11 Aug 2014 | 6:47 pm
        WHoooo HHhhoooo!!!  Do a happy Dance! We have reached OVER 119,000 fans/ likes on our facebook fanpage! Thank you to all our readers, friends, and “spoonies” for making every part of our online community as supportive as it is. You guys are amazing! If you haven’t “liked” us yet on facebook come on […]
  • I am Sick, NOT Stupid.

    9 Aug 2014 | 8:09 pm
    Many years ago I heard a joke that was going around and it went like this. A guy was going home from the auto mechanic and just as he was passing a psychiatric center, a wheel fell off his car. He stopped, surveyed the situation and realized that the mechanic must have been distracted and […]
  • Painsomnia – Tick tock, tick tock, the clock keeps moving…

    5 Aug 2014 | 2:06 pm
    My mind won’t stop working. Tick, tock, tick, tock…many nights I just can’t sleep and the only companion I have is the clock and a teddy bear. Teddy doesn’t talk and I can’t get the clock to “SHUT UP”. I know, it’s just my brain trying to work things out but still I AM AWAKE. […]
  • Christine’s “Unbirthday Party”! – SAVE THE DATE!

    29 Jul 2014 | 7:33 pm
    Christine’s “Unbirthday Party”! The Purple Party Dinner Dance - September 7th - SAVE THE DATE! It is my birthday and I am throwing the party… but you get the dinner, dancing, cake, music,swag bags, gifts and prizes! The best gift of all is our ability to come together and help others. Usually the birthday girl makes a wish. This year, help me make others wishes come true. All proceeds from this party will go to newly established But You Don’t Look Sick Foundation. The Party is Sunday September 7th. If you live near Long Island, NY This is…
  • No Rhyme or Reason. I have done all I can do.

    23 Jul 2014 | 9:38 am
    What to do when you have done everything, and still feel like crap. There are days when I feel really crappy. Maybe I didn’t take my meds on time or I overdid the day before. What I really hate is when I seem to have done everything right and I still feel so wrong. The […]
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    WordPress Tag: Lupus

  • Lupus and Suicide-Trigger Warning

    Johnnie Jae
    14 Aug 2014 | 2:17 am
    I am Suicidal. It comes with the territory of having lupus and depression. I am not ashamed of admitting that there is rarely a day that goes by when I don’t think about suicide. I am not ashamed to admit that I have attempted suicide several times in the last 19 years. When it comes to talking about my life with lupus, I struggle with the words that I want to say because I’m so used to having to hide it and having to sugar coat it and be the kind of sick that somehow highlights the strength and determination of the human spirit and whatever other nonsense that makes people more…
  • Obat Herbal Penyakit Lupus

    13 Aug 2014 | 9:02 pm
    Obat Herbal Penyakit Lupus obat herbal penyakit lupus – Penyakit lupus merupakan salah satu penyakit yang mematikan karena penyakit ini setara dengan penyakit kanker dan banyak yang meninggal dunia karena mengidap penyakit ini. Penyakit lupus menyerang pada sistem kekebalan tubuh manusia secara berlebihan, sehingga mengganggu kesehatan tubuh. Istilah lupus ini dalam bahasa latin di sebut dengan ” anjing hutan “. Ciri ciri penyakit lupus apabila menyerang dada maka akan timbul rasa sakit sehingga menyebabkan penderitanya mengalami kesulitan pada saat bernapas. Pada penderita penyakit…
  • Diet For AutoImmune Arthritis

    Claudia Wood
    13 Aug 2014 | 6:38 pm
    Last month, I was diagnosed with autoimmune arthritis, which has come as a complete shock to me, because I’m the fittest I have been in a while and I’m feeling really good, except for being fatigued. Last week, it was confirmed that I did have a type of autoimmune arthritis, my body just hadn’t figured out what type it had decided to be yet. I’ve had multiple blood tests, urine tests and an x-ray, ultrasound and MRI to try to figure out my back pain. Unfortunately, I also have a squished disc in my L5 which is causing Sciatica and Stage 2 Sacroiliitis, which means…
  • Lupus and Depression

    13 Aug 2014 | 5:53 pm
  • Stubborning Out

    Whimsical Thoughts
    13 Aug 2014 | 5:30 pm
    I’ve never been one to ask for help, even when I need it. I’m not sure why I find it hard to admit something is beyond my ability, but I do. It may be because I’m ever so slightly, just a smidgen or a punch stubborn. Just a wee bit. Oh heck who am I kidding, I’m as stubborn as a mule and then some! I recently encountered a situation where it would have been wiser to admit I couldn’t do it all on my own. There is no shame in admitting this, and a wise person won’t push beyond a limit. I’m the type of girl who likes to draw lines, not in the sand, but…
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    Despite Lupus

  • Your chance to support a great cause - VEDA t-shirts are calling your name!

    22 Aug 2014 | 5:00 am
    Remember my friend Marissa over at She did the fantastic 12-12-12 Project, asking me to participate as one of the featured project members. She did the 12-12-12 project in an effort to get a little perspective on her own chronic illness - a debilitating vestibular disorder that basically leaves her imbalanced/chronically dizzy all day long.In an effort to raise awareness, she's recently teamed up with VEDA - the Vestibular Disorders Association - to offer a series of pretty swanky t-shirts to raise money for the cause.100% of the proceeds go to VEDA - so don't miss this…
  • The Traveling Pillfold - Finding a soul mate at the zoo!

    18 Aug 2014 | 5:00 am
    The girls and I traveled to Indiana last week to visit grandma and grandpa - and we decided to pay a visit to our furry friends at the Indianapolis Zoo while we were there. I had my Trocadero Pillfold along, and sought out the zebras to see how the design measured up. Looks pretty good to me!        Deirdre and Bernadette holding down the entranceWant to borrow my pillfold, Mr. Zebra? 
  • Celebrities with lupus: the list keeps growing!

    13 Aug 2014 | 5:00 am
    Check out one of the latest list of celebrities who have bravely come forward to talk about the fact that they have lupus. Thanks to each one of them for revealing that they, too, battle with the disease. Seeing the word "lupus" in the news makes me feel part of something big - so I personally appreciate their efforts to make headlines!Celebrities With LupusSource: WikipediaSource: Flickr There are seven celebrities listed in the article above, but from what I've seen in the news lately, we can also add Selena Gomez and Kristen Johnston to the list. Thanks, gals, for…
  • Which doctor to consult? Learning how to manage lupus symptoms and get results!

    11 Aug 2014 | 5:00 am
    My rheumatologist is good at a lot of things. He manages my lupus care tremendously well. He’s proactive in his treatment, aggressive, but not overzealous when it comes to managing flares, and willingly accepts my input when I offer it up (which is all too frequent, I’m sure!) So when it comes to anything lupus related, my rheumatologist is undoubtedly my first stop. But after 14 years with the disease, I’ve learned that while my rheumatologist needs to know everything about my lupus, he may not always be the best doctor to treat every symptom of my lupus. My hair loss is a perfect…
  • #pillfoldtrending #bordeauxthenewtopseller #thankyourosie

    6 Aug 2014 | 1:54 pm
    Just a wee bit excited about Rosie O'Donnell talking up my pillbags on Twitter. She took great photos of her Bordeaux Pillfold. Don't her meds look oh-so-stylish in there?User Actions FollowingRosieVerified account‏RosieBest travel pill organizer - ever Reply  Retweeted  Favorite  More
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    The Life of a 20-Something With Lupus

  • Prescription for Disaster!

    31 Jul 2014 | 9:06 pm
    Let's face it-the main topic of conversation for my blog is a topic that isn't necessarily the happiest of topics to discuss. In spite of some of the horror stories I've shared, you'll find that often times, I take a humorous approach to my stories. But why would you take a humorous approach to such a thing! This is serious! Well, there are a few answers to that. One, sometimes, some of the stories of things I've been through are so ludicrous that I actually find humour in them. me, at the end of the day, Lupus is something that I'm just going to have to deal with, and if I…
  • And today I accomplished...

    24 Jun 2014 | 6:46 pm
    ...nothing. Nadda. Ziltch.Today was one of those days that were doomed from the get go.I woke up today at the time I would normally wake up if I was gonna get up and go to work-5:45am-ish. I realized that my stomach was absolutely KILLING me. Why, you ask? One of the many benefits of being a woman-terrible, terrible CRAMPS.Now, I discussed my awful cramps with my gynecologist when I went to see her last month. She suggested I take a small dose of naproxen to help with the pain. I did this last month, but my creatinine has been on a steady increase- my baseline is in the 90s (or 9.0ish) and…
  • Gyne-NOOO

    30 May 2014 | 2:12 pm
    So first, let me get this out of the way.When you have a chronic illness/are immunosuppressed (lupus/kidney transplant, for example), it is absolutely a good idea to get your pap smears on an annual basis. Do as I say and not as I do, with the "as I do" being that it has been about 4-5 years since my last pap.Well, I had one just a few weeks ago.So, why did it take me so freaking long to get another pap??! Good question! I'll tell you.Let me be clear when I say that my first 1-2 paps were the things nightmares are made of. They were the most uncomfortable experiences EVER.  I prepared…
  • Wish Me Luck?

    29 May 2014 | 4:44 pm
    So as I've mentioned many times, I went back to school and took HR. Finding an HR role has been difficult to say the least, but I've certainly been looking.Recently, a few entry level HR roles have come up within my current place of employment. I've applied for them and have put my best foot forward. So, I'd ask you to keep me in your thoughts. Cross your fingers, pray, whatever it is that you do...please do that for me!You know, I've been here looking for a new role for a while now, as I really feel like it's time for me to get out of what I'm doing right now. I've been doing what I do now…
  • Ouch, my STOMACH!

    28 May 2014 | 7:36 pm
    Yes, I know-I've been slacking. Sue me!Now that THAT is out of the way, let's get back to business.First of all, my birthday was on May 11 *sings happy birthday to self*Now, let's REALLY get back to business.At the beginning of last year, after being diagnosed with c.diff, I began experiencing weird stomach pains that my specialists did not equate directly to the c.diff. These stomach pains were mainly activated by my eating pretty much anything.  It was awful, because I was so hungry, but I knew that once I ate to satisfy the hunger pains, these other, different pains would come about.
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