• Most Topular Stories

  • 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
  • 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.
  • What's in the Book Basket This Week? Life, Dreams and Principles

    Lupus News
    23 Aug 2014 | 10:25 pm
    The regular Sunday Book basket usually lists 15 such books. On an irregular basis we also publish a Christian Book Basket specifically listing 'Christian Books' and a 'Children's Book Basket.'
  • Can Diabetes Be Reversed? New Research Help Reverse The Disease In 21 Days Diet Plan

    Lupus News
    1 Sep 2014 | 4:39 pm
    The term 'reversal' is applied when diabetics can go off their insulin medication but still need to stick to certain lifestyle changes. MIAMI, FL, USA, September 1, 2014 / -- Medical science has again proved its mettle by …
  • New Research Further Demonstrates Smoking Impact on Cutaneous Lupus

    Latest News from the S.L.E. Lupus Foundation
    27 Aug 2014 | 7:58 am
    A newly published analysis of 838 patients with cutaneous lupus throughout Europe confirmed previous research results showing that smoking can worsen the severity of the disease and lessen the effectiveness of antimalarial treatment. Findings strongly suggest that people with cutaneous lupus should avoid smoking. Key findings include: read more
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    But You Dont Look Sick? support for those with invisible illness or chronic illness

  • What is the perfect gift to give, when you want to give the most memorable gift?

    26 Aug 2014 | 11:00 am
    My father turned 66 this summer and I decided to get him a gift that was both unique and memorable. He has a great interest in family history and saved some mementos from his mother’s estate. In an old worn out shipping box in the basement I found a small reel of old fashioned video […]
  • 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…
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    WordPress Tag: Lupus

  • Miss Fickle Shout-out, Lupus Style!

    22 Aug 2014 | 5:31 pm
    One more note for today: my post on me shredding myself with too much beach-going found its way into the leisure section of Life With Lupus, an online newsletter packed with info on lupus and related chronic illnesses.  Thanks to Miss Anne-Marie for passing along my meandering thoughts to the outside world!!!
  • Kicking Butt In Homemade Dresses and Button Boots

    Whimsical Thoughts
    22 Aug 2014 | 5:20 pm
    I secretly wonder how those women, those amazing women who came long before managed it all. Those women who basically packed up house because their men said to was time to move, find so e land or whatever. Those women who had to pack, round-up the children etc and set off on a bumpy, unpaved road to who knows where meeting heaven knows what. And then after the journey, why there was a house to set up. By setting up a house I mean building. As in building one where no house had stood before. Musing the resources available. Not always a lot of other to help out. So these women would help their…
  • As Good as it Gets?

    22 Aug 2014 | 1:39 pm
    I’m on meds galore, I know I’ll end up on more after the rheumatologist but I’m starting to wonder and feel hopeless. I’m exhausted constantly, my body feels like shit, I feel like shit. Does it ever get better or is this as good as it gets?
  • Fine

    22 Aug 2014 | 10:32 am
    Yes, I looked fine when you saw me last week. I looked as healthy as you, dressed to the nines with my hair high and sleek, dipping my bread in fondue. I hadn’t left my own house in too long. I had a friend do my hair. The times that I go out are when I am strong. It took three hours to prepare. Yes, I looked fine at that wedding last year. You even saw me go dance, cutting the rug with my sweet engineer, caught in our own lover’s trance. By evening’s end, there were tears in my eyes. Stabbing pain shot through my back. I danced with my lover, however unwise. I knew that…
  • Thy Will Be Done?

    22 Aug 2014 | 7:20 am
    “I have no doubt God WILL totally and completely heal you, Erin. Don’t even think otherwise!” A sweet woman said this to me recently, and she was not the first who has done so. Now, I have zero doubt that God CAN heal me. He might choose to, which I would totally be on-board with. (Believe me- I would love to do black-water rafting, run marathons, host the perfect parties, go back to college, eat my weight in KFC Hotwings and Cinnabons…) However, I need to be prepared that He may choose to glorify Himself through my sickness, not KFC consumption. I might not ever get better. I know…
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    Despite Lupus

  • Finding flexibility in a lupus lifestyle. How far can you go?

    25 Aug 2014 | 5:00 am
    "To push, or not to push, that is the question."At least, that seems like it's the question. I've been feeling absolutely, positively fabulous lately. No swelling, no extra fatigue, and no pain. Not even a pesky stray digit that flares up when I don't eat quite right, or get enough sleep. Lupus has been as quiet as ever, and I'm completely thrilled about it!In fact, I can even say that every few days, my afternoon naps don't seem quite as critical as they usually are. I still need one, that's for sure. But about twice a week, I a) don't feel fatigued until about 3:30pm, and b) I can get…
  • 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…
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    The Life of a 20-Something With Lupus

  • Life

    31 Aug 2014 | 10:10 am
    The last number of weeks have been busy. Let me try and brief you on what's going on:Last month, I was successful in securing a part time, work from home HR Coordinator internship with a not-for profit organization. If you keep up with my blog, you'll know that I have been a bit frustrated and at a loss as to what or how I should go about securing an HR role, with my main obstacle being my lack of experience.  Thankfully, this company decided to take a chance on me and give me the opportunity to gain some valuable experience which I can put on my resume. This will hopefully help me in…
  • 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…
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