Lupus

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    Lupus News From Medical News Today

  • Guidelines For Management Of Lupus Nephritis Issued By The American College Of Rheumatology

    7 May 2012 | 2:00 am
    The American College of Rheumatology (ACR) has issued newly created guidelines for the screening, treatment, and management of lupus nephritis - a severe manifestation of systemic lupus erythematosus (SLE) where the disease attacks the kidneys. Previously, only general guidelines for SLE existed for clinicians...

  • Lupus Nephritis - New Guidelines Issued

    4 May 2012 | 2:00 am
    Lupus nephritis is a kidney disorder caused by a complication of systemic lupus erythematosus (SLE). Unlike previous guidelines, the new ACR guidelines are specific to lupus nephritis and include newer treatments, techniques for detecting renal disease, as well as treatment of pregnant SLE patients with kidney involvement. The guidelines are published in Arthritis Care & Research...

  • A Link Between Atherosclerosis And Autoimmunity

    9 Apr 2012 | 2:00 am
    Individuals who suffer from autoimmune diseases also display a tendency to develop atherosclerosis - the condition popularly known as hardening of the arteries. Clinical researchers at LMU, in collaboration with colleagues in Würzburg, have now discovered a mechanism which helps to explain the connection between the two types of disorder...

  • Epstein Barr Virus Protects Against Autoimmunity

    4 Apr 2012 | 2:00 am
    To the surprise of investigating researchers, an animal model of Epstein Barr virus protected lupus-prone mice against development of the autoimmune disease. Earlier work had suggested that EBV might promote the development of autoimmunity. "We were completely surprised. So, we redid the experiments, and the results came out the same," said Dr...

  • 3 New Lupus Genes Discovered Through International Collaboration

    2 Apr 2012 | 2:00 am
    Three newly confirmed lupus genes are opening new avenues of research at the Oklahoma Medical Research Foundation. A paper published in the April 6 issue of the American Journal of Human Genetics describes three lupus genes discovered by OMRF researchers as part of a massive international collaboration...
 
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    Latest News from the S.L.E. Lupus Foundation

  • Canadian Comedian Raising Awareness of Lupus as Serious Disease

    ellen
    15 May 2012 | 9:13 am
    Full story

  • Hear About Results of LUMINA Study on Racial Disparities in Lupus Thursday, May 17

    ellen
    14 May 2012 | 10:30 am
    Learn about the results of the LUMINA study and its implications for reducing racial disparities in lupus at a seminar conducted by the National Institute on Minority Health and Health Disparities (NIMHD) in collaboration with the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) on May 17 at 2:00 – 3:30 PM. read more

  • Results of a study on arthritis treatment for lupus nephritis to be presented at medical meeting

    ellen
    14 May 2012 | 10:26 am
    The treatment ORENCIA® (abatacept) currently approved for rheumatoid arthritis is being explored as a possible therapy for lupus nephritis (kidney disease). Results will be presented by Richard Furie, MD at the upcoming European League Against Rheumatism (EULAR) Annual European Congress of Rheumatology in Berlin, June 6-9 medical meeting. A member of the S.L.E. Lupus Foundation Medical Advisory Board, Dr. read more

  • Lupus LA Chosen by U.S. Government for Lupus Multicultural Pilot Study

    ellen
    11 May 2012 | 2:16 pm
    Lupus LA is proud to announce that the organization was selected for a pilot study by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH) seeking to achieve multicultural parity for people with bone, muscle, skin and joint diseases. As the West Coast division of the 40-year old S.L.E. Lupus Foundation, Lupus LA reflects the organization’s continued dedication to meeting the needs of diverse and underserved populations. Full story

  • S.L.E. Lupus Foundation Loops in NY for World Lupus Day

    ellen
    11 May 2012 | 1:50 pm
    The S.L.E. Lupus Foundation is encircling New York during May Lupus Awareness Month, with a particular focus yesterday in recognition of World Lupus Day May 10. Thousands of New Yorkers learned about lupus looking up at one of the world’s largest billboards in the heart of Times Square during rush hour and stopping by a day-long exhibit in Grand Central Terminal hosted by volunteers and staff. But our efforts do not stop at one day -- throughout the month, special events are being held throughout the borough. Full story read more
 
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    Latest News from the Lupus Research Institute

  • Hear About Results of LUMINA Study on Racial Disparities in Lupus Thursday, May 17

    14 May 2012 | 10:26 am
    Learn about the results of the LUMINA study and its implications for reducing racial disparities in lupus at a seminar conducted by the National Institute on Minority Health and Health Disparities (NIMHD) in collaboration with the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) on May 17 at 2:00 – 3:30 PM. read more

  • Results of a study on arthritis treatment for lupus nephritis to be presented at medical meeting

    14 May 2012 | 10:23 am
    The treatment ORENCIA® (abatacept) currently approved for rheumatoid arthritis is being explored as a possible therapy for lupus nephritis (kidney disease). Results will be presented by Richard Furie, MD at the upcoming European League Against Rheumatism (EULAR) Annual European Congress of Rheumatology in Berlin, June 6-9 medical meeting. A member of the S.L.E. Lupus Foundation Medical Advisory Board, Dr. read more

  • Lupus LA Chosen by U.S. Government for Lupus Multicultural Pilot Study

    11 May 2012 | 2:16 pm
    Lupus LA is proud to announce that the organization was selected for a pilot study by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH) seeking to achieve multicultural parity for people with bone, muscle, skin and joint diseases. As the West Coast division of the 40-year old S.L.E. read more

  • Get into the Loop with NY’s S.L.E. Lupus Foundation May 10 for World Lupus Day; Stay in the Loop Year-round

    10 May 2012 | 2:00 am
    NYC Mayor Michael Bloomberg Proclaims May Lupus Awareness MonthNEW YORK, NY, May 10 -- East side, West side, all around the town is where the S.L.E. Lupus Foundation is today, getting New Yorkers into the loop for World Lupus Day. In response to a petition from the S.L.E. Lupus Foundation outlining the critical need for greater recognition of the disease, May 2012 was proclaimed “Lupus Awareness Month” by Michael R. Bloomberg, Mayor of the City of New York. read more

  • May Proclaimed Lupus Awareness Month in California at LRI CA Coalition Members Urging

    10 May 2012 | 2:00 am
    The California State Assembly unanimously approved a resolution proclaiming May as Lupus Awareness Month statewide, and commended the Lupus Foundation of Northern California, Lupus LA and the Lupus Foundation of Southern California for their work on behalf of lupus patients and their families.
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    lupus - Google News

  • Change in Lupus Manifests with Mild Symptoms - MedPage Today

    15 May 2012 | 4:47 pm
    Change in Lupus Manifests with Mild SymptomsMedPage TodayExplain that that 15% of patients with cutaneous lupus erythematosus (CLE) progressed to systemic lupus erythematosus (SLE) if they had only CLE at the initial visit. Note that patients who had CLE and progressed to SLE had more moderate and severe

  • CDM Woman Speaks Out About Lupus - Patch.com

    15 May 2012 | 3:41 pm
    CDM Woman Speaks Out About LupusPatch.comIn honor of Lupus Awareness Month, Bridget Hood is promoting the online video Lupus Out Loud to encourage others with the illness to talk openly to their doctors. By Nisha Gutierrez-Jaime Bridget Hood and her brother, Nick, celebrating another year of Mom fights back against chronic illnessNaperville SunCdM Woman Featured in Newly Launched Lupus Awareness VideoCorona del Mar Todayall 3 news articles »

  • Lupus Awareness Month proclaimed in Marshall - The Marshall Democrat-News

    15 May 2012 | 3:24 pm
    Lupus Awareness Month proclaimed in MarshallThe Marshall Democrat-NewsBy SARAH REED/Staff Writer Nearly one million Americans have been diagnosed with Lupus -- an autoimmune inflammatory disease that can affect the skin, joints, blood and organs. The causes of Lupus aren't yet known, according to the Lupus Foundation of and more »

  • Learn about Systemic Lupus Erythematosus at state library - The Borneo Post

    15 May 2012 | 12:14 pm
    Learn about Systemic Lupus Erythematosus at state libraryThe Borneo PostKUCHING: The state library is holding an exhibition on Systemic Lupus Erythematosus (SLE) to create awareness of this chronic disease. SLE is a systemic autoimmune disease or autoimmune connective tissue disease that can affect any part of the body.Not seeing it does not mean it is not soBlytheville Courier Newsall 2 news articles »

  • Lupus sufferer says life can still be beautiful - Nassau Guardian

    15 May 2012 | 9:55 am
    Nassau GuardianLupus sufferer says life can still be beautifulNassau GuardianRashan Willliams says with the right management, proper healthcare, positive attitude and the will to live, you can lead to a normal life whether you have Lupus or any other chronic disease. PHOTO: EDWARD RUSSELL III / TNG Rashan Willliams, 24,
 
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    But You Dont Look Sick? support for those with invisible illness or chronic illness

  • Who knew a simple thing like a phone could make life so much easier? Vtech phone system LS6475-3

    Christine
    11 May 2012 | 12:19 pm
    I recently received a new phone system and I am in love. Who knew such a simple thing as a phone could make your life so much easier, and any mom knows that she needs to make her life easier.The VTech phone system, model LS6475-3 is a cordless hands free phone, with two handsets. I [...]

  • Product Review: KIND Bars Snacks – Yummy, Healthy, Easy and Gluten-Free!

    Christine
    26 Apr 2012 | 9:34 am
    It can be tricky when you are on a special diet, like gluten-free or are simply trying to eat healthier. Seems like the most nutritious foods aren’t very appealing, and the most yummy goodies are nothing more than empty calories that derail you from your goals. And what about convenience? You want something you can tuck into [...]

  • Hellllllooooooo Monday!

    Christine
    16 Apr 2012 | 11:38 am
    Monday came earlier than I expected if you know what I mean. I Wasn’t ready for the morning as the sun peaked in my window. I wanted to curl up under my covers and pretend I had “just one more hour”. But I know I would be asking for just one more hour of rest [...]

  • Christine Miserandino featured in Johnson & Johnson’s first Lupus video on their dedicated YouTube health channel!

    Christine
    3 Apr 2012 | 8:58 pm
    I am honored to say I was chosen to be featured in Johnson & Johnson Network’s first Lupus video. They already have a huge catalog of informative, non branded videos on their health dedicated youtube channel… but now we can finally add Lupus to the list of health, disease and medical topics! Learn a little bit about [...]

  • The “spoonie” Small Print

    Christine
    2 Apr 2012 | 12:11 pm
    Batteries not included. Shipping and handling extra. Minimum purchase required. Small print is everywhere and on just about everything. I come with a Spoonie version of small print: if I feel up to it. Whenever I make plans, I always have to add “if I feel up to it.” I never know how I will [...]
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    Road to a Lupus Cure

  • Band Together for Lupus Awareness This May

    1 May 2012 | 8:00 am
    New research has shown that most Americans, 59 percent, know little or nothing about lupus and its devastating impact. This May for Lupus Awareness Month, the Lupus Foundation of America (LFA) is urging individuals nationwide to Band Together for Lupus Awareness® to improve understanding of lupus, an unpredictable and sometimes fatal disease that affects an estimated 1.5 million Americans. This year, the LFA is asking the public to Put On Purple for lupus awareness by wearing purple and telling people why they are showing their support for all people affected by this disease. Put On Purple…

  • What are you doing next month?

    25 Apr 2012 | 11:12 am
    May is Lupus Awareness Month! Research shows that most Americans know little or nothing about lupus and its devastating impact on millions of people. You can change that! BAND TOGETHER FOR LUPUS AWARENESS to help the Lupus Foundation of America fight this unpredictable and sometimes fatal disease and show support for those who suffer from it. Start Planning Your Lupus Awareness Month Activities Now!Check out our Awareness Kit for fliers, Facebook and Twitter images, and other materials to build awareness of lupus within your community and among your family and friends.

  • Will you walk with us?

    18 Apr 2012 | 11:32 am
    Beverly, a Walker from California, shares her lupus story and why she joins the Lupus Foundation of America and Walk for Lupus Now® below. Sign up for a Walk in your community at www.WalkforLupusNow.org. Beverly from California I was diagnosed with lupus while serving in the United States Air Force. I was a flight test engineer flying as a back seater in F-16s and T-38s. After a long, hot summer in the desert I noticed a rash across the bridge of my nose and cheeks, some raised bumps on my fingers, increasing joint pain, and severe fatigue after each flight. I was immediately instructed to…

  • Loss and Hope: Find Your Balance

    30 Mar 2012 | 11:14 am
    The other day I listened to a teleconference on the results of a nationwide survey of more than 950 people in the lupus community—502 people with lupus, 204 supporters (family members or friends) of people with lupus, and 251 rheumatologists. The survey was designed to “evaluate the daily and long-term impact of lupus on health, family relationships, career, and quality of life, and to identify potential gaps in communication.” The results showed that “communication challenges are significant.” You can say that again! 87% of people with lupus in the survey admitted minimizing their…

  • Sneak Peek of Spring 2012 issue of Lupus Now Magazine

    14 Mar 2012 | 1:09 pm
    Maurissa Tancharoen Whedon is behind the successes of hits like Fox’s Dollhouse, and the Web series, Dr. Horrible’s Sing-Along Blog. But the cover story of the Spring 2012 issue of Lupus Now magazine is not about that. Don’t miss this exclusive interview on Mo’s life with lupus, and how the love and support of family and friends makes all the difference. There is much uncertainty and misunderstanding about the many ways that the lungs and pulmonary system can be affected by lupus. Learn about warning signs you should never ignore, and much more, in our feature, “Breathless.” One…
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    lupus « WordPress.com Tag Feed

  • Lupus Is Not The Only Part That Destroys

    questforharmony
    6 May 2012 | 11:37 pm
    My mother has lupus. She has had it for most of my life. Recently,  she came to stay with my family and I for a few days. It had been a while since she had been a guest in my home and it was difficult for me to comprehend the degree deterioration my mother had sustained in just the short amount of time since I had seen  her last. I knew I needed to look at all aspects of her illnesses and that the  bottom  line was that the medication she was taking that was supposed to be improving the quality of her life was actually doing  very little good for her  and was possibly doing more damage…

  • A night with Passion. Pt. 2

    DinaDinosaur
    6 May 2012 | 4:17 pm
    Hello! It’s been a while! I’ve been too busy!! =[ However, with the stress of uni deadlines and work, I managed to go to see the awesome and super talented Jeremy Passion. If you have not read The Empty Suitcase Project and A night with Passion, please read both of them! As my ‘A night with Passion’ post mentioned, Jeremy Passion was in Europe doing a tour, ‘the little tour that could’. London was lucky enough to have Jeremy perform twice in one month! The first show was amazing. I enjoyed myself so much and Jeremy was such a gentleman. I really…

  • Diagnosis and Treatment Lupus Fact #6 - A diagnosis often takes years

    lupusadventurer
    6 May 2012 | 10:00 am
    Diagnosis and Treatment: Many symptoms of lupus mimic those of other illnesses, and symptoms can come and go over time, which makes diagnosis more difficult. Because lupus can attack nearly any system of the body at any given time, lupus can seem to be a number of unconnected health problems within the same patient. lupus discoid rashes Lupus rashes are easily be dismissed by doctors diagnosing them as eczema or allergic skin reactions and rashes.  Before my lupus diagnosis, over the years my discoid lupus rashes were diagnosed as a  “sun allergy”, eczema, strawberry allergies,…

  • May is Lupus Awareness Month – How are you spreading the word?

    Ro
    6 May 2012 | 9:25 am
    Small White butterfly (Pieris rapae) (Photo credit: Wikipedia) Butterflies are one of the symbols of lupus, so chosen for the butterfly rash that some patients get.   May is the month for warm(er) weather, flowers – and lupus awareness. If you’ve just been diagnosed, then it’s a great time to check out a few events, meet others with lupus and see what resources and information are available to you. Already a pro on the lupus circuit? Stay on the cutting edge of lupus treatments and research. And, of course, this month is a great time to help your friends and family get the…

  • So... Here goes nothing.

    amoran79
    6 May 2012 | 4:12 am
    I’m used to writing in a journal and someone once told me that this was better. On that note, here goes nothing. I’m a full time college student working on my Bachelors in Human Service, but that is the least of my worries. What worries me the most is that I was diagnosed with Systemic Lupus in June of 2011 and it is still not under control after all this time. I am on my last option in medication which is Plaquenil and my rheumatologist wants to start me on methotrexate injections since I could not take it orally. The biggest in delay from being able to get on these shots is that…
 
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    Chronic Chick Talk

  • Cactus for Boo-Boos

    admin
    14 May 2012 | 7:25 pm
    Dealing with the aches and pains from living with a chronic illness is overwhelming for anyone. I’ve been dealing with it every day since my daughter was in elementary school. Considering that she’s now a high school senior it’s a big deal. My illness has affected our quality of life in many ways. I’m always looking for ways to help with things, especially the swelling. It has stopped me from enjoying the simplest things in life like going to a school function or being able to walk out the front door when a family out was scheduled. I’m always looking for a way to help deal with…

  • RIP MASON

    admin
    14 May 2012 | 7:22 pm
    credit: Morguefiles My sweet dog Mason went to heaven on 5-6-12 after fighting for his life for over a month. He got sick right after I applied the poison ADVANTIX  onto him for flea treatment. I’m broken hearted that I lost my dog of nearly ten years to such a senseless thing. I was trying to protect him from the fleas that we fought with last summer. RIP Sweet Baby Boy. Mama loves you!

  • Coloring with your Kids

    admin
    24 Apr 2012 | 10:27 pm
    When my daughter was very young I started teaching her about the world around her. We spent a lot of time writing the alphabet and learning colors. One of the many things I used to teach her was printable worksheets. It gave me the opportunity to interact with my daughter. Doing the Preschool Worksheets while my daughter was young has made her a very creative person today. She still enjoys drawing and crafting.

  • Physical Therapy for Hip Injuries and Life

    admin
    24 Apr 2012 | 10:25 pm
    I’ve been dealing with a lot of health issues lately. My hip was injured a couple of weeks before Thanksgiving 2011. I’m currently in physical therapy to help strengthen the hip, but it’s very slow going. I think the physical therapy only being 30 minutes isn’t given me enough time to improve things.  I’ve been doing the exercise with the theraband I’m up to a blue band now which is great. I feel very discoraged that I’m only doing 30 minutes twice a week. I do 10 of each exercise and ride a recumbent bicycle which is really cool. I wish I had one at…

  • Seeing the Time with Chronic Illness

    admin
    25 Feb 2012 | 8:28 pm
    Taking medications is a part of the day to day life of living with a chronic illness. I’m pretty bad about taking my pills at the same time every day since I don’t wear a wristwatch like I used to as a teenager. I couldn’t use the excuse that I forgot the time since my mom always made sure I was wearing my wristwatch every day. She didn’t want to give me an excuse for not being home for dinner on time, even if she was hanging out a load of laundry when I got home instead of hanging clothes out on the clothesline attached to two different trees in our backyard. The line ran from one…
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    Despite Lupus

  • Facebook Chat with the Experts at HSS

    14 May 2012 | 7:00 am
    Here's another chance to get your burning lupus medication questions answered! The doctors at Hospital for Special Surgery (HSS) have signed on for an hour of questions and answers this Wednesday, May 16th from 5:30 to 6:30pm EST. Topic of discussion? Lupus and medications. Join the conversation with some of the nation's top rheumatologists from the Mary Kirkland Center for Lupus Research.Just go to HSS’s Facebook page, "like" their page and join the conversation. Who are the rheumatologists from HSS that you'll be chatting with?Michael Lockshin, MD - Adult RheumatologistJane Salmon,…

  • Pillbags at a gift shop near you!

    11 May 2012 | 7:00 am
    The Pillbags are making their way to retail shops around the country - and we're thrilled to see them on the shelves! We've started out with a bang here in the Washington D.C. area - with lovely shops in No. Virginia and Maryland carrying the bags. I'll highlight the stores throughout the coming weeks - just in case you prefer to pick out your favorite pillbag in person!One of the first shops to carry the pillbags was the Maris Elaine Gallery at the National Harbor in Oxen Hill, Maryland. The Gallery carries exquisite, one of a kind finds that owner Terri Hartwell Easter handpicks. She's…

  • Basil, sweet basil: the lupus accommodations we make.

    9 May 2012 | 7:00 am
    I think I’m going to do it. I think I’m going to try some basil. Years ago, when my random angioedema incidents were high and oh-so-annoying (you can read about them here and here), I tried everything to uncover the triggers. I had my trusty spreadsheet, of course, and I logged food, drink, exercise, weather, work, sleep, etc. etc. And, it turned out, that there seemed to be an uncanny amount of swellings on days when I would ingest…drumroll, please…fresh basil. In fact, it seemed that anytime I had fresh herbs – of the spinach, arugula, and basil variety, in particular – I would…

  • How much is too much? Calling out lupus and her symptoms.

    7 May 2012 | 7:00 am
    A few weeks ago, I blogged about the phases of lupus, and the fact that life with the disease really can improve. It's hard to believe that when you're in the midst of a flare, but as most of us know (but sometimes forget), flares don't last forever.That said, when I got to the end of the "Phases" post back in February, I felt like I had more to say on the subject. (Quell your jokes, please.) There was an essential piece of the puzzle that I didn't touch on, and that is the ability to know when a flare is lasting too long, and when it's time to speak up.Okay - so first - you probably…

  • Living in the USA equals a leg up on Benlysta.

    4 May 2012 | 7:00 am
    While I have an upcoming post titled "Made in the USA", in which you can learn everything you ever wanted to know about manufacturing pill bags in the United States of America, I figured I should first do a post about LIVING in the USA, based up on this article that a friend forwarded me recently. Looks as though Benlysta wasn't welcomed with open arms in the UK as it was here in the US. It appears that Nice, the National Institute for Health and Clinical Excellence, and also the Scottish Medicines Consortium, has rejected Glaxo-Smith Kline's Benlysta, thus denying patients access to the…
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    My Life Works Today!

  • Today is World Lupus Day~

    maria
    10 May 2012 | 1:55 pm
      What does this day mean for you?

  • Define “ugly”

    maria
    6 May 2012 | 2:15 pm
      I am always amazed at how difficult it is for me to return to writing here after a long absence.  Why is it so hard to get motivated to be willing to spill my thoughts into the cosmos?  Is it fear of scrutiny or rejection? Is it the sense that no one cares anyway?  Is it an exercise in futility, because no matter what I think of things…nothing changes? Since my last post, a whole lot of crap has happened and, quite honestly, I just didn’t want to relive or process any of it. Yet, moving on wasn’t possible either…I felt stuck in the muck and, as it is when you’re…

  • Is it plugged in?

    maria
    18 Feb 2012 | 6:23 pm
    Okay, I had a conversation today with my mom that triggered an immediate need to post something.  Nothing like a rant about my mother to get me motivated to write. First, some background~ My mom is 72 years old and lives with me.  She has been battling physical challenges since before I was even a glimmer in her eye.  In fact, I suspect I am a DES baby due to the nine months of nausea I put her through while pregnant with me.  And, believe me, she works that one into the ground. Currently, she struggles with constant pain (to name only one challenge), due to a combination, we suspect,…

  • Putting our money where our needs are

    maria
    16 Feb 2012 | 3:27 pm
    So, as the little reader board on my site here has been teasing you about regarding the “first line of your story”, I’m finally able to write a little more about what I mean by that. For years, I have explored the new, and sometimes renewed, methods by which we try to make some sense or gain some control over our lives.  What I’ve learned over time and have expressed here constantly, is that each experience with lupus or other chronic conditions are uniquely our own.  Although there is a benefit to building a network or personal support community to help us weather the daily…

  • A Different Twist on “Wordless” Wednesdays

    maria
    15 Feb 2012 | 4:17 pm
    For some time now, bloggers  have been hosting posts on Wednesdays that offer only a visual image of what is on their minds that day.  I would like to offer my image today that suitably describes my last two weeks… I picked up crocheting again this winter as a means of “stress-relief meets holiday gift-giving season.”  This particular piece was a gift to my daughter, who happens to love owls right now.  I can’t take credit for the concept – as my friend Leslie, who authors the Getting Closer to Myself  blog, sent me a similar one in my holiday surprise package last…
 
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    My Lupus Update

  • What World Lupus day & Lupus Awareness Month mean to me

    10 May 2012 | 8:09 am
    A few weeks ago I shared my story to women who have known me for years. I thought the fact that I had Lupus wouldn't suprise them since I don't hide it. But, it surprised many. I was disappointed in myself for not sharing more about Lupus with others and the more I thought about it the more I realized that I was, but the platform I was using wasn't for everyone and I don't walk around with a billboard announcing it. Instead I use social media. I realize I'm quiet on facebook about it. I use twitter to vent about lupus, and even then I block people who know me in real life. I keep a blog, but…

  • Put on Purple for Lupus

    18 Apr 2012 | 9:28 am
    On May 18th the Lupus Foundation of America is hosting a "Put on Purple for Lupus" event. The goal is to get people to wear purple to raise awareness for Lupus.I am going to have a contest... So here are the rules:Wear purple on the 18th and post a photo on Facebook or Twitter (Tag me! I have to see it!)Get others to do this (Have them tag both you & me so I can keep track of who did it because of your efforts)Get a Celebrity to wear purple and get 5 extra entries (Local celebrities count too!!) Get your company to sponsor this event and get 3 extra entries. If you need more information,…

  • Frustration

    18 Apr 2012 | 9:17 am
    I have been playing with this post in my head for a few weeks now. But this weekend really set off my frustrations. I had made plans for the weekend, no more than a "normal" person could handle. My 9th Benlysta infusion was on Friday (a week late). I left wrok early and went home to take a nap so I was ready for what was ahead of me. That is really when my frustration hit the roof. By Sunday I was so exhausted and in so much pain I could barely deal with it. I want to be able to live my life. I want to be able to make plans and follow through. I want to not have to worry about flaring any…

  • Update

    27 Mar 2012 | 9:20 am
    Not much new to update on my end. Wait, I take that back. I have been putting off posting for so long I haven't give you the latest update... so here goes.Last month I learned that my Iron levels were seriously low. So much that they were considering stopping the benlysta if I couldn't get them back up. I am taking Iron supplements a few times a week. They make me itch like crazy so I don't like to take them.Friday I go in for a procedure that will hopefully stop my mentral cycle so my iron levels don't drop. I hope that works because stopping the Benlysta is not something I want to do.In…

  • My take on the Royal Pains Lupus Story Line

    28 Feb 2012 | 3:16 pm
    I am a big fan of the show "Royal Pains" on the USA Network. I was behind a couple of weeks when the show aired where the character with Lupus died, but I saw many posts from others in the Lupus community that were upset that they had shown a character with Lupus die. So here is my take:As I watched the show (the story line was approx 5 episodes long), I was happy to see a Lupus story line that didn't use Lupus as a joke or something that was so mysterious they only explained it with severe exhaustion and a rash across the face.I watched as the character heard the news, and dismissed it as if…
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    The Life of a 20-Something With Lupus

  • Happy Birthday To Me...!

    10 May 2012 | 11:21 pm
    It's my birthday! Happy Birthday to Meeeeeeee! LOL (today is also my "not my twin" sister's birthday too hehehe).I haven't posted in a while as I'm not sure that I had much to say, but I do have a couple of updates which I will post in the near future.Notice anything about my header? I guess I cannot in good conscience refer to myself as a 20-something..now can I! :PThank you all for reading my blog, commenting, etc.  I receive a lot of messages telling me how much my blog has helped you, or how it has given you the strength to keep on keepin' on after seeing what I have been…

  • Organ Donation Awareness Week

    1 May 2012 | 3:16 pm
    Last week was organ donation awareness week!At the hospital, there was a table that was set up to provide passers by with more information on organ donation as well as how they could register to be an organ donor. As someone who just had a kidney transplant, I had the pleasure of volunteering at the table! It was great talking to others, answering questions, and sharing my story.  We also had some pins and cookies for sale too! It was pretty fun.Yum..organ donation ribbon sugar cookies...The wonderful lady kept me company after my transplant! She works in housekeeping I think.Register…

  • Experience with Neupogen

    28 Apr 2012 | 9:05 pm
    Sorry for my delayed entry- I know I said that I would talk about my experience with using Neupogen. I used it last weekend on Friday, Saturday, and Sunday.I left the Neupogen vial on the table for about 10 minutes before I drew the medicine from the vial on each of those three days. Drawing the medicine out of the vial as well as injecting the medication subcutaneously was no problem for me. My issue was with the terrible side effects I suffered from!The number 1 issue was terrible, throbbing back pain! It started on the evening of the first dose. I had terrible throbbing back pain that…

  • Blah! My WBC count is down!

    19 Apr 2012 | 6:45 pm
    Currently, I'm pretty much in hibernation. My white blood cell count is low right now. From what I understand, it is a side effect from the new medications that I have been on since the transplant.These are the new meds that I am on:(transplant) Mycophenolate sodium(transplant) Tacrolimus(antiviral) Valcyte(antibiotic) SulfamethoxazoleThe medications that are highlighted are the medications that I have been told to hold for the time being while more tests are done in relation to my white count. I will repeat all of my blood work on Thursday, then I will go back to the hospital on Friday…

  • Making a Green Smoothie (video) /Ninja Review

    10 Apr 2012 | 8:30 am
    I've made green smoothies near everyday for the last little while, so I finally decided to record a video about it as well as discuss my blender/smoothie maker, the Ninja Professional Blender.There are a lot of blenders out there specifically made for making smoothies.  I looked at a lot of them before finally deciding on going with the Ninja Professional Blender.  I didn't want to buy the absolute cheapest blender out there, but at the same time, I also didn't want to spend $600+ dollars on a smoothie either.  After weighing my options, I finally decided on getting the Ninja…
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