The more than 1.5 million Americans with systemic lupus erythematosus (or lupus) suffer from a variety of symptoms that flare and subside, often including painful or swollen joints, extreme fatigue, skin rashes, fever, and kidney problems. Researchers at The Scripps Research Institute have now identified the main trigger for the development of this disease.
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Lupus News From Medical News Today
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Key Culprits In Lupus Revealed By Scripps Research Scientists
1 Jul 2009 | 12:00 am -
Lupus Foundation Of America Seeks Proposals For Research Studies On Childhood Lupus And Stem Cell Transplantation
24 Jun 2009 | 8:00 amThe Lupus Foundation of America (LFA) is seeking proposals for grant funding for research studies on lupus, an unpredictable and potentially fatal autoimmune disease. Grants will support areas of study in pediatric lupus and adult stem cell transplantation. The purposes of the studies are to advance adult stem cell transplantation research in humans as a treatment for lupus and address key understanding of pediatric/adolescent lupus research issues. -
Structures From Immune System's Oldest Branch Shed Light On A Range Of Diseases
18 Jun 2009 | 3:00 amHow molecules of the oldest branch of the human immune system have interconnected has remained a mystery. Now, two new structures, both involving a central component of an enzyme important to the complement system of the immune response, reveal how this system fights invading microbes while avoiding problems of the body attacking itself. -
Anxiety And Depression Lower Quality Of Life In Majority Of Systemic Lupus Erythematosus Patients
16 Jun 2009 | 1:00 am92.8% of patients with systemic lupus erythematosus (SLE) suffer anxiety and depression which significantly affects both their physical and emotional quality of life (QoL), according to the results of a new study presented today at EULAR 2009, the Annual Congress of the European League Against Rheumatism in Copenhagen, Denmark. Logistic regression analysis revealed that depression was the most significant factor shown to affect QoL (p=0.015; OR=0.18; CI 95%:0.045-0.72). -
Positive Long-Term Data For BENLYSTA (formerly LYMPHOSTAT-B(R)) In Patients With Active Lupus
15 Jun 2009 | 5:00 amHuman Genome Sciences (HGS) has reported continuation data from a Phase II study of BENLYSTA™ (belimumab, formerly LymphoStat-B®) showing sustained improvement in patients with active systemic lupus after four years of treatment. The data was presented at the EULAR 2009 scientific meeting in Copenhagen, Denmark.
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Lupus News
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Lupus treatments deemed even
1 Jul 2009 | 11:20 pmThe question: In people with lupus, the immune system goes awry and turns on the body. -
Scripps research scientists find key culprits in lupus
29 Jun 2009 | 3:04 pmLA JOLLA, CA, June 29, 2009 The more than 1.5 million Americans with systemic lupus erythematosus suffer from a variety of symptoms that flare and subside, often including painful or swollen joints, extreme fatigue, skin rashes, fever, and kidney problems. -
HGS Hoping to Survive Final Test of Lupus Drug
28 Jun 2009 | 8:11 pmDavid Stump, HGS's head of drug development, hopes the first PowerPoint slide the biostatistician presents at the results meeting will say success. -
Not every oddity you've heard about Michael was true
27 Jun 2009 | 12:16 pmThe late pop star Michael Jackson led what could only be called an eccentric life. -
Arthritis Diagnosis Can Change
26 Jun 2009 | 12:03 pmQ: I was originally diagnosed with rheumatoid arthritis three years ago. Multiple treatments have been ineffective.
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Latest News from the Lupus Research Institute
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LRI Researchers Publish Discoveries, Impact Field
17 Jun 2009 | 10:55 amRecent PublicationsRecent LRI researcher discoveries published include: read more -
Human Genome's Lupus Drug Shows Success in Trials; Shares Jump
17 Jun 2009 | 6:31 amA midstage trial of a Human Genome Sciences Inc. drug to treat a form of lupus showed sustained ability to reduce flare-ups caused by the chronic, life-threatening autoimmune disease in combination with standard medical care, the company said. Read full article -
Lupus-Relevant Recovery Act Awards
10 Jun 2009 | 7:37 amSeveral NIH Recovery Act Awards announced in early June are targeted at small businesses and for-profit biotechnology companies—and may be of interest to R&D companies working in lupus. Others are relevant to lupus research in different and creative ways. They include: Small Business Catalyst Awards for Accelerating Innovative Research (R43) read more -
NIH's National Center on Minority Health and Health Disparities Announces Funding of Three Additional Recovery Act Programs
13 May 2009 | 7:38 amThe NIH's National Center on Minority Health and Health Disparities (NCMHD) has announced that it is accepting applications for funding of three more Recovery Act programs related to health disparities. The awards provide funding to: - establish an Exploratory NCMHD Center of Excellence read more -
NSF Funding $400 Million to Renovate Facilities and Increase Access to Shared Research Instruments
11 May 2009 | 1:22 pmThe National Science Foundation (NSF) has announced that it will give $400 million in awards for the renovation of science facilities and the purchase of major equipment at higher education institutions as part of the Recovery Act (ARRA). Funding will be allocated equally between these one-time programs. read more
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lupus - Google News
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Things to do: Carillon recital - Naperville Sun
4 Jul 2009 | 2:02 amThings to do: Carillon recitalNaperville SunPlanning Meeting: The Lupus Foundation of America, Illinois (LFAI) Chapter will hold a planning meeting for residents interested in helping with the "Walk City briefs: Historic Trolley ToursNaperville SunYou can save a kittenNaperville Sunall 4 news articles » -
Jackson's Former Doc -- Reprimanded Over Rx - TMZ.com
3 Jul 2009 | 4:51 pmExaminer.comJackson's Former Doc -- Reprimanded Over RxTMZ.comDr. Metzger is a lupus specialist -- Michael Jackson reportedly had the disease. Dr. Metzger traveled with Jackson during the HIStory Tour in 1996. Doctor wrote fraudulent prescriptions for Janet JacksonExaminer.comMichael Jackson's Former Doctor Was Reprimanded For Writing 411mania.comall 3 news articles » -
Researchers Identify Lupus Trigger - OneMedPlace
3 Jul 2009 | 2:24 pmResearchers Identify Lupus TriggerOneMedPlaceScientists at the Scripps Research Institute have discovered the biological trigger for the autoimmune disease lupus. Researchers identified three proteins, and more » -
EXCLUSIVE: Michael Jackson Had Cancerous Lesion Removed From Nose - Us Magazine
3 Jul 2009 | 7:35 amUs MagazineEXCLUSIVE: Michael Jackson Had Cancerous Lesion Removed From NoseUs MagazineHe had lupus, most people with the disease cannot sleep and are always in pain, Fibromylagia is one of them and not to mention Arthritis....poor guy had and more » -
Lipper Snaps UK-Lupus alpha leads real estate funds in June - Reuters
3 Jul 2009 | 6:46 amLipper Snaps UK-Lupus alpha leads real estate funds in JuneReutersLONDON, July 3 (Reuters) - German fund manager Lupus alpha led the British-registered real estate funds in June, data from Thomson Reuters fund research and more »
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ButYouDontLookSick.com
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36 Easy things that you can do to make the life of your chronically ill friend a bit better.
22 Jun 2009 | 11:38 amYou do not need to spend a lot of money. You can be thoughtful in so many ways. The point is to do something, and do something today. I have listed below 36 easy ideas that anyone would appreciate. Sometimes it is hard for a patient to ask for help. Just do it! The hardest thing about chronic disease is that is is chronic. I had a friend who had a really bad flu and she received flowers that very week. With me – since I am sick all the time… I get nothing. Am I any less sick, sad, frustrated, lonely, or bored. NO, I need your love and support now more than ever. When everyone else forgets… -
Television: Christine Donato, board member of the Lupus Alliance of America, is featured in a recent edition of Legislative Report with Senator Kemp Hannon
17 Jun 2009 | 3:32 pmChristine Donato, board member of the Lupus Alliance of America, is featured in a recent edition of Legislative Report with Senator Kemp Hannon (R-NY) to promote Lupus Awareness Month. In the interview is also JoAnn Quinn the executive director of the Lupus Alliance, Long Island/ Queens affiliate. It was a wonderful experience and I was honored to be chosen to be apart of the interview. The interview can be seen below. Please note that the interview had to be saved in 2 halves, so you will need to view both videos to see the entire show. Click to read more ... -
Video: Christine participates in local Lupus PSA
15 Jun 2009 | 7:38 pmThis Spring Christine had the opportunity to participate in a local PSA (Public Service Announcement) for cable teleivision for the Lupus Alliance of America- Long Island/ Queens Affiliate. Christine is in the center back row. There are 2 spots airing currently. The first spot is 30 sec. and the 2nd video spot is a minute. Feel free to help spread Lupus Awareness by sharing the videos with your friends, family, or by sharing on your social networks like twitter, facebook, myspace or your personal blogs. Click to read more ... -
Facebook, Twitter, and MySpace Oh My! ButYouDontLookSick.com on the web!
11 Jun 2009 | 11:10 amWe love being connected with our readers! Since we have added those "handy dandy" features at the bottom of every article, we have noticed our readers have shared our articles, posted them on their personal profiles and more. We can not thank you enough for sharing this site with your friends and family. Even though we hope you come to ButYouDontLookSick.com every day for our new articles and tips.. we know there are other places on the web where you guys like to hang out. Social Networking is more and more popular and we like to stay connected! We can use technology as a tool to help each… -
Book Review: The Bloodless Stigmata by Dee Kite
8 Jun 2009 | 8:43 pmThis author has had Multiple Sclerosis for more than 20 years. The main character in her book is just finding out that she has disease and the effects of the disease impact her life. She can no longer do the job as well as she used to be able to. And it’s changing her personal life, too. Anyone who has fatigue, pain, body parts that don’t work or other things that hold you back will be able to relate to this story. Click to read more ...
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Everyone's Blog Posts - BUTTERFLIES AMONG US
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going ons at kimber house
a lot has been going on here at my house and i haven't been on very much. so sorry for not being on. my son Mitchell moved out which tore me up, but he is 23 so i had to let him go. he is getting married July6. I will be getting a 2 yr old step grandson which is precious and my son's girlfriend is pregnant. Double grandma. the last girlfriend lied and the baby was not his, so i was real upset. My lupus is still inactive. -
Greetings Everyone!
I'm a Newbie. I was "officially" diagnosed with Fibromyalgia in January, 2004. Prior to that, I was diagnosed with CFS. I've had different doctors give me opposing views on Fibro & CFS: Some have told me that CFS is the precursor to Fibro, others have told me that they are two separate illnesses. All I really know: I'm in constant pain and tire often and easily. This seems like a really great site - I look forward to meeting as many of you as possible! -
Lupus and Your Skin
Summer is here, and with summer comes vacations and lots of exposure to the sun. For many people who are living with lupus, this means you have to prepare yourself for the light -- both sun and artificial -- that you’ll face during the day. Every day. To help make sure you’re as protected as possible when you venture outside … for a game of miniature golf while you’re on vacation, or while you’re working inside beneath fluorescent lights, the LFA has created this special section of content for you. Prepare yourself for the light. -
Positive Long-Term Data for BENLYSTA (formerly LYMPHOSTAT-B®) in Patients with Active Lupus
Human Genome Sciences (HGS) has reported continuation data from a Phase II study of BENLYSTA™ (belimumab, formerly LymphoStat-B®) showing sustained improvement in patients with active systemic lupus after four years of treatment. The data was presented at the EULAR 2009 scientific meeting in Copenhagen, Denmark. Early results from a 52-week Phase III study of BENLYSTA™ are expected to be announced in July and results from a 76-week study are scheduled to be released in November. BENLYSTA™ is being co-developed and commercialized by HGS and GlaxoSmithKline (GSK). The HGS website has the… -
In the Mix: Designing a Social Life around the Limits of Lupus
It’s always a challenge for people with lupus to keep up with more active friends and make concrete social plans. But don’t use it as an excuse for not maintaining old friendships or creating new ones. Instead, focus on helping the people in your life better understand your condition and its restrictions: Once you accept and make peace with your situation, it will be easier for you to explain it to others. Learn how you can to keep lupus from slowing your social life.
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On the Road to a Cure
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How Lupus Can Affect Your Skin
1 Jul 2009 | 7:42 amSummer is here, and with summer comes vacations and lots of exposure to the sun. For many people who are living with lupus, this means you have to prepare yourself for the light -- both sun and artificial -- that you’ll face during the day. Every day.To help make sure you’re as protected as possible when you venture outside … for a game of miniature golf while you’re on vacation, or while you’re working inside beneath fluorescent lights, the LFA has created a special section of content for you.Some of the items you'll find on this landing page include:Info on LFA's July 15 webchat… -
Positive Long-Term Data for BENLYSTA (formerly LYMPHOSTAT-B®) in Patients with Active Lupus
29 Jun 2009 | 5:06 amHuman Genome Sciences (HGS) has reported continuation data from a Phase II study of BENLYSTA™ (belimumab, formerly LymphoStat-B®) showing sustained improvement in patients with active systemic lupus after four years of treatment. The data was presented at the EULAR 2009 scientific meeting in Copenhagen, Denmark.Early results from a 52-week Phase III study of BENLYSTA™ are expected to be announced in July and results from a 76-week study are scheduled to be released in November.BENLYSTA™ is being co-developed and commercialized by HGS and GlaxoSmithKline (GSK).The HGS website has the… -
In the Mix: Designing a Social Life around the Limits of Lupus
26 Jun 2009 | 5:14 amIt’s always a challenge for people with lupus to keep up with more active friends and make concrete social plans. But don’t use it as an excuse for not maintaining old friendships or creating new ones. Instead, focus on helping the people in your life better understand your condition and its restrictions: Once you accept and make peace with your situation, it will be easier for you to explain it to others.Learn how you can to keep lupus from slowing your social life. -
The Summer 2009 Issue of Lupus Now Magazine Has Arrived
24 Jun 2009 | 5:17 amWe have a lot for you in the new Summer issue of Lupus Now magazine! In particular, the articles cover topics that were requested by our readers in past surveys.Understanding how lupus runs in families, and why, led to our cover story on the heredity of lupus. It will get you thinking about your own family history, and whether autoimmune diseases have a foothold in your family tree.And if lupus has caused your path in life to skip outside the lines, or even turn a right angle, you’ll enjoy meeting four people whose lupus changed their lives for the better, in "Changing Direction.""In the… -
Lupus Foundation of America Urges Department of Defense (DoD) to Expand Medical Research on Lupus
22 Jun 2009 | 5:05 amFoundation’s CEO Testifies Before Senate Defense Appropriations SubcommitteeLast Friday, Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America, appeared before the Senate Defense Appropriations Subcommittee to testify about lupus, the prototypical autoimmune disease that principally affects young women in their child-bearing years. Ms. Raymond also described the impact of the disease on men and young children and the disproportionate impact of the disease on African-Americans, Hispanics, Asian Americans and Pacific Islanders and American Indians. She…
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lupus « WordPress.com Tag Feed
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Nekad Matung
3 Jul 2009 | 7:40 pmoleh: Wedha Abdul Rasyid 2 Februari 2009, jam 1 pagi. Di TV, di set ke 4, kedudukan 2-1 buat Nadal. Tapi kemudian dia main jelek, kedudukan berbalik 3-6 buat Federer. Gak tau kenapa, aku belain Nadal. Apa aku rasialis gara-gara Federer kelihatan lebih bule? Sementara sejak lepas magrib tadi, tanganku masih asyik mengorek kepala Lupus dari clay pabrik seharga 120 ribu. Sering banget salah raut. Maklum, selama ini nggak pernah mengukir patung. Seingatku,sampai setua ini (59 tahun) hanya pernah 3 kali aku bikin patung. Itupun nggak serius. Pertama waktu masih SD d/h SR, aku bikin asbak dari… -
A good day
3 Jul 2009 | 12:51 pmThis weather is good for me, it might be hot but it makes my joints feel better. Like I said yesterday it is more of an ache than the stabbing burning. I even went out today. We went into our local town. Partly to get some food shopping and partly as some of the local churches had an event. There is a ruin of an old church in the middle of our local High Street and although it is surrounded by shops it is still owned by the church. My husband has been out the last 3 mornings as he is helping with the shopping to get the burgers, bread and water. Then there is a team of people who are… -
Aspartame... ¡Las malas noticias!
3 Jul 2009 | 11:47 amMark Gold WNHO 30/06/09 Nutrasweet(r), Equal Measure(r), Spoonful(r), Canderel(r) (E951) El aspartame no fue aprobado sino hasta 1981 para alimentos secos. Por más de ocho años la FDA rechazó su aprobación debido a los ataques y los tumores de cerebro que este componente produjo en animales de laboratorio. La FDA continuó rechazando la aprobación hasta que el Presidente Reagan tomó cargo (amigo de Searle) y despidió al Comisionado de la FDA que no aprobó el Aspartame. Designaron al Dr. Artur Hull Hayes Jr. como nuevo Comisionado. Incluso entonces había tanta oposición a la… -
Diamonds, Health and Houses
3 Jul 2009 | 10:01 amThe word is out. The Congressional Budget Office has scored the complete health care reform bill and it definitely looks affordable, hundreds of billions less than previous estimates. Ezra Klein has summarized the results for WashingtonPost.com (Ezra Klein – Primary Documents: The Congressional Budget Office’s Score of the HELP Bill). Definitely worth reading his brief post. Here’s a bit more info on Alternet today: The Results Are In: A Public Health Plan Saves Big Money | Health and Wellness | AlterNet. The Congressional Budget Office is nonpartisan,… -
Hot weather
2 Jul 2009 | 3:10 pmI have never enjoyed the hot weather, in the past the cold winter months were good. I have not owned a winter coat for years because I have no need. One of my children is similar. But the last two or three years that has changed. Last year I enjoyed the hot days which was a shock for me as this was new. But the heat means less pain in the joints. As a fair skinned person I have always taken care not to be out in the sun for long so I have not had much of a problem with lupus and sunlight. But the last few days I have felt better than normal. The heat does sap energy, but then again I have…
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Chronic Chick Talk
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Wordless Wednesday: Flower Power
1 Jul 2009 | 1:29 pm -
Music Monday: Madonna Vogue
28 Jun 2009 | 3:23 pmCome join Music Monday and share your songs with us. One simple rule, leave ONLY the actual post link here. You can grab this code at LJL Please note these links are STRICTLY for Music Monday participants only. All others will be deleted without prejudice. -
Looking for Deals all over the Web
26 Jun 2009 | 3:04 pmToday, I was looking all over the internet for some new shoes for my daughter. She wants a pair of Etnies in pink and black. I don’t even know if they sell those colors together. I’ve surfed all over the web until I’m blue in the face. Kids sure do ask for the darndest things. On my travels through cyberspace, I found a site called Best Online Coupons that offers Endless Shoes and Handbags promotional code . They’ve got a coupon for just about everything. I was surprised how many of the big companies offer great deals. I need to buy a new freezer so I’m going to… -
Rest In Peace Michael Jackson
26 Jun 2009 | 2:52 pmMicheal Jackson was pronounced dead at the UCLA hospital yesterday from a heart attack. It’s a sad day in America for all of his fans and most of all his family. Many people may not know that he had Lupus according to what I’ve read in the past. It makes me wonder if the cardiac arrest was related to the Lupus. Then the talk of him abusing drugs is very sad. Chances are if he was abusing drugs it may have been from the pain associated with lupus. Anyone in chronic pain understands just how unbearable it can be to be in pain everyday of your life.Sometimes it’s hard to… -
Pregnant and Stylish
24 Jun 2009 | 8:17 pmDuring my pregnancy, it was difficult to find stylish and well fitting maternity clothes. I was stuck with wearing clothing that looked more like a nightgown or housecoat than daytime clothing. On top of that it seemed like everyone in town was pregnant. Kiki Fashions has a lot of great maternity outfits for all stages of pregnancy. I’ve seen a few nice tops and bottoms if I was expecting a baby. They’re even offering a coupon code of “blogfriends”, which will get you 20% off your purchases. This discount is especially important with the economy being so bad.
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Dancing With Butterflies
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Breaking Dawn
30 Jun 2009 | 4:23 pmJust like the butterfly, I too will awaken in my own time. ~Deborah Chaskin My life once again is put on temporary on hold, just when I thought things are getting better that I’m finally reaching the end of my dark tunnel and finally finding the light… boom, it happens again! Lupus strikes back and this time it did not only crippled my body but it also crippled me emotionally. I’ve always been a strong person with great faith, I always try to see the bright side of everything and I always tell myself that God will never give me something I cannot handle and I thought I am… -
My Provider
30 Jun 2009 | 3:54 pmI got up early today because I simply cannot sleep… again! It’s been one of those sleepless nights again and today is my follow-up check up with my doctors again and I’m off to the hospital again. I prepared some insurance documents for my doctors to sign so that I can claim some money from my insurance company because of my hospitalization. It’s been financially draining and my family’s resources are starting to wear off and I feel such a burden and ashamed at the same time. I wish I could find some help, some financial assistance to help me continue with my… -
WW#3: Regret or Rejoice
30 Jun 2009 | 5:43 am -
June Has Ended
30 Jun 2009 | 5:31 amLast Wednesday, June 17 just when I thought everything is getting better and I am slowly regaining strength lupus strikes again… Tuesday night, I felt so cold and I had to turn off the air con, at midnight I was already having chills and had a high fever, it was dawn when I had a difficulty in breathing and I have to be rushed in the nearest hospital and so there it was my ten-day confinement due to post-operation residue. It was physically painful and emotionally draining, again my life is put on hold and quite honestly there was a time that I almost stopped fighting and almost gave… -
What’s Left?
30 Jun 2009 | 5:14 amDays are passing me over and since I’ve been sick for most of the time I missed a lot of party invitations from my friends and even families. I know somehow I can manage to go but I don’t want to be a burden with everyone so I preferred not to. I’ll rather stay home than sit alone and watch them worry about me and preventing them to have a good time. I really hope that I can go back to my normal health condition and have my life back, at least of what’s left of it.
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Despite Lupus
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New lupus drug? Could it be?
30 Jun 2009 | 4:59 amCheck out a few paragraphs of this promising article featured in the Washington Post on Monday. The description of lupus as an evasive and confounding disease is quite accurate, don't you think?HGS Hoping to Survive Final Test of Lupus DrugFirm Is Upbeat Despite the OddsBy Michael S. Rosenwald, Washington Post Staff Writer Monday, June 29, 2009In the high-stakes, high-risk, high-failure business of developing drugs, there are two events that test an executive's intestinal fortitude. One: The first time a drug is tried by a human. Is he still alive? Two: Getting results of final-stage testing. -
Deliberately healthy...
29 Jun 2009 | 5:01 amUgh! A summer cold! Just when I thought I was in the clear from catching Johnny's cold - bam! I felt that old familiar tickle in my throat. In fact, I think I felt the cold coming on the night before - my knees and hips were really achy (like lupus-achy, not just an ache from too much activity or an achy-all-over feeling you get with the flu) and it hurt to walk on the balls of my feet. Don't know if you know what I'm talking about with the feet sensitivity - but it happens to me all the time with lupus. It might be my elbows, feet, or hands - but it's as if nodules in those areas of my body… -
I'm in the phonebook!!!
25 Jun 2009 | 10:00 amMy first post-published review! If you haven't already, take a minute to check out the blog at My Life Works Today! - Maria from MLWT posted a review of my book, "Despite Lupus." Thanks to Maria for taking the time to read and comment on my book. The review is a real keeper!And in other Despite Lupus news - we've officially arrived! (On Amazon.com, that is!) That's right - take another quick moment to check out Despite Lupus on Amazon. The search inside feature is up and running - so feel free to browse through the book. (Of course, Johnny's already searched the book for his name...glad I… -
24 Jun 2009 | 2:50 pm
24 Jun 2009 | 2:50 pmJust a quick reminder that my next book signing is coming up! Join me at The Java Shack in Arlington, VA on Thursday, June 25th from 9-11am. Can't remember the last time I was dressed and ready to leave the house before 8am...but this will good practice. :)Here are the details - hope you can make it!Thursday, June 25th, 9-11amThe Java Shack2507 N. Franklin StreetArlington, VABook signing, good coffee, and a chat with the author. Oh my!Can't make it on Thursday? Stop by on Saturday from 10-11:30am - same place!See you there! -
The doctor is in
22 Jun 2009 | 5:01 amIt's pretty obvious that I don't mind sharing my opinion. That's what blogs are all about, right?! So when it comes to giving my opinion about symptoms, medication, or other issues related to lupus, I'm the first one to offer up my two cents. But I rarely dole out medical advice without suggesting that a doctor be consulted at the same time. I'm happy to share my experiences, but consulting your doctor is paramount to making sure you and your disease get the best treatment possible.That said, I remember a time not so long ago when people suggested to me that I "consult my doctor", and the…
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My Life Works Today!
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A new lupus book that speaks from the heart
23 Jun 2009 | 5:23 amWhen facing my lupus diagnosis, I sought out many books covering medical terms, confusing symptoms, current and potential treatment options - all to quench my thirst for conquering this disease single-handedly. Early on, I didn’t recognize myself as a part of a medial team or a community. Basically, my attempts to control my illness meant shutting off any communication that didn’t offer me any sense of personal control. Last month, I had the opportunity to review a new book on lupus that I believe, after reading it twice, would have saved me some valuable time, tears and… -
Every Day Is Father’s Day!
21 Jun 2009 | 11:50 pmI had some trouble with my computer beginning Thursday and throughout this weekend, so I just wasn’t able to post a Happy Father’s Day in time~ I do hope all you guys out there, who are father’s, did enjoy yourselves along with those who love you. Always wishing you well~ I also had a post for those guys living with lupus - either directly or indirectly - that I wanted to put up along with my well wishes. I have a couple of posts I need to make up, so the thoughts about how men ‘process’ illness will be in the next few days. I would like to put up the information… -
Should We Stay or Should We Go?
14 Jun 2009 | 3:12 am“Should I stay or should I go now? Should I stay or should I go now? If I go there will be trouble An’ if I stay it will be double So come on and let me know” (The Clash, album Combat Rock -1982) I’ve been going to various support group meetings lately in preparation of my next article for the Pacific NW Chapter’s (LFA) newsletter ” In The Lupe! ” . I have to admit it was also for personal reasons that I decided to dive back into exploring where support group participation fits, or doesn’t fit, for me. Generally speaking, support groups… -
Finding strength and inspiration from our Communities
4 Jun 2009 | 10:45 amI want to send out a warm-hearted “Thank You! “to all of the wonderful people who contributed to our first annual “Our Voices for Lupus Awareness” guest blogging event this May. We heard from several readers who found something they could relate to in living with illness themselves through blog comments, sites like Facebook and Twitter, emails and direct calls. They stated that they feel inspired to take on new personal goals or aspirations including entrepreneurship, travel, creative endeavors, gratitude and service work, or to simply to take another look at lupus… -
Our Voices For Lupus Awareness: Sara finds her way and shares her story Despite Lupus
31 May 2009 | 1:31 amI am so excited to present my blogging friend Sara as our final Guest Blogger for MLWT’s ” Our Voices For Lupus Awareness ” event this May. I have been reading her blog for more than a year now and she shares a perspective towards living well that is what MLWT represents…stepping towards a life that consists of many things, with lupus being only one of them. Sara Gorman, author of Despite Lupus: How to Live Well with a Chronic Illness, talks about her new book and her experiences with systemic lupus: What is the book, Despite Lupus: How to Live Well with a…
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The Life of a 20-Something With Lupus
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Gimme my freakin' blood tubes!!
3 Jul 2009 | 4:24 pmYesterday I took myself on a bit of a journey. The first stop was the local 7-eleven. I bought myself a bus pass in anticipation of my multiple stops. The bus pass cost 9 dollars. My trip consisted of 4 different bus trips. Each trip would normally cost 2.75...so a bus pass in this case was definitely the way to go.Next stop: blood lab. I had to get a blood test done for transplant work up. It has to be done quarterly so that when/if a kidney comes up, there will be recent blood on file for them to reference.Because I bring my own bloods in regularly, the lab provides me with a card that have… -
Happy Canada Day!! (aka Mommy/Daughter Day X 2)
1 Jul 2009 | 4:57 pmHappy Canada Day, my fellow Canadians!My Mother and I headed out for what may very well be an annual tradition: navigating the streets via public transit in search of wonderful Canada Day festivities.There was much talk that many things would be cancelled due to the fact that the garbage strike is still on, however the place that Mom and I usually go to by the water was still happening, so we headed down there. There was lots of food, snacks, and vendors. I bought 2 churros - delicious spanish donuts. Yummm!We spent the rest of the day walking around, shopping, and enjoying the lovely… -
Reading Week
1 Jul 2009 | 6:20 amJune 22-June 26 was reading week.Beautiful weather was enjoyed for that whole time. I had purchased tickets for myself and 3 of my classmates to go to an amusement park (Canada's wonderland.)Wouldn't you know: it RAINED the entire day? Every other day that week was sweltering hot. But on the day we decide to go out for fun?? It rained. We went into the local store and spent 6 bucks on blue rain ponchos.In spite of being soaked, we enjoyed the day. The rain let up later on in the day so we enjoyed it. The lineups for rides were on the most part quite short as many people probably opted to stay… -
Where were you when you heard?
25 Jun 2009 | 6:07 pmThis day started off wonderfully. I dialyzed for 8 and a half hours. Boy did I feel "cleansed".I went to lunch today with a good friend. We had a great time. Well, the lunch wasn't particularly good. In fact...I didn't eat it at all. It was shrimp, veggies, noodles and wontons in broth. The shrimp must have been cooked in the broth...but I don't think the broth was hot enough when they put the shrimp in there because the shrimp was raw. Raw in spite of the fact that the shrimp was cut down the middle length wise. The veggies were also raw. I'd have liked it much better if the veggies had been… -
It's HOTTT!
25 Jun 2009 | 7:54 amThere is much going on in my city nowadays. Some of our city workers are on strike. So, what does that mean? Well, those who take their kids to city run daycares are out of luck. The think the affects most people is the fact that this also means that there is no garbage collection until the strike is resolved. Great for me, a dialysis patient who makes plenty of garbage daily.The fact that it is 30 degrees celcius outside (86 degrees fahrenheit) doesn't help the garbage strike either. The smell of garbage baking in the hot sun is not pleasant...not pleasant at all. It is also supposed to rain…
