Lupus

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    Lupus News

  • Free Lupus Support Group Offered

    8 Feb 2010 | 7:05 am
    The Lupus Foundation of America Greater Washington Chapter offers a free support group for Lupus patients.

  • Synchronicity fashion show tour

    7 Feb 2010 | 2:02 am
    The concept of this exciting series of shows is to create a relaxed environment for fashionistas to enjoy a top-of-the-line runway show and bring awareness to the Lupus Foundation.

  • Area Events

    4 Feb 2010 | 9:20 pm
    THURSDAY FEB. 4, 2010 A* South Central Oklahoma Lupus Support Group meets the first Thursday of each month at 6 p.m. at Main Street Church of Christ, 408 East Main Street, Davis.

  • New lupus drug offers hope

    2 Feb 2010 | 9:07 pm
    For the millions of Americans suffering from lupus, a debilitating autoimmune disease for which there is no cure, a new breakthrough in treatment may provide the one thing patients and doctors alike have been searching for: hope.

  • Autoimmune Diseases

    1 Feb 2010 | 3:56 pm
    From March 27th of 2009 I have been diagnosed so far with 4 Autoimmune diseases.
 
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    Latest News from the Lupus Research Institute

  • Lupus Research Institute Invites Scientists with Innovative Ideas to Help Pioneer Lupus Discovery

    4 Feb 2010 | 1:08 pm
    Novel Research Grant Deadline is May 28, 2010New York, NY, February 4, 2010—The world’s leading private supporter of innovative research in systemic lupus erythematosus (lupus)—the Lupus Research Institute (LRI)—invites scientists with bold new approaches to discovering the cause, improving treatment, and curing lupus to apply for financial support. read more

  • Sisters Helping Sisters: Study in Sisters of Women with SLE

    28 Jan 2010 | 12:25 pm
    Enrollment begins nationwideIf you have a sister with lupus, consider making a ‘gift’ to future generations by signing up for the national SisSLE—Sisters of Women with SLE—research study. read more

  • Congratulations Dr. Barton!

    28 Jan 2010 | 11:34 am
    American Association of Immunologists’ Biosciences Investigator AwardFor Outstanding Early-Career Research Contributions to the Field of ImmunologyDr. Barton will give a lecture upon accepting this prestigious award at the 2010 AAI Annual Meeting in Baltimore in early May. “The LRI has been a key source of funding for my lab, especially in the early years when we were just getting started.” Read more about Dr. Barton

  • Mapping Why Lupus Discriminates

    27 Jan 2010 | 1:03 pm
    University of Chicago "Science Life" blog reports on LRI-funded scientist exploring why lupus is more common and severe in African-AmericansBy Rob Mitchum, Science Life read more

  • Major Report to Congress by Secretary of Health and Human Services Documents Need for National Lupus Health Education Program

    22 Jan 2010 | 11:09 am
    New report resulting from Lupus Research Institute’s congressional advocacy describes state of lupus research, impact of disease, and barriers to care A major report on lupus from the Secretary of Health and Human Services to the U.S. Congress this week reviews the state of the disease and documents the need for a comprehensive national provider health education program to help eliminate the barriers of racial disparities in the early medical diagnosis and treatment of lupus. read more
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    Everyone's Blog Posts - BUTTERFLIES AMONG US

  • When a Family Member is Diagnosed with Lupus

    William Davis
    Family life inevitably changes when a family member is diagnosed with lupus. Chores need to be redistributed, responsibilities shared, and everyone in the family must try to remain flexible. There will be emotional considerations as well.Open communication within the family about lupus may help to allay fears and help to foster an understanding and supportive environment for all family affected by the disease.Learn steps that your family can take together on this new journey.

  • Watch Videos of the Latest Lupus-Related Heart Disease Research

    William Davis
    People with lupus are at higher risk for developing heart disease than the general population. Several studies have shown that women with lupus have a 5-to-10-fold increased risk of cardiovascular disease (CVD) as compared to women who don't have lupus. In addition, African American women are three times more likely to develop lupus than Caucasian women which increases their risk of developing lupus-related CVD.The Lupus Foundation of America (LFA) has committed significant funds to a vital and innovative research program addressing this often serious and potentially fatal consequence of…

  • Updated Guidelines for Cardiovascular Health for Women

    William Davis
    You know that heart health is important, but when you’re juggling work and home life, keeping heart healthy through diet and exercise can be tough. For people with lupus, especially women, those little slips can spell big trouble. Lupus and its treatment often create problems, says Amy Kao, M.D., M.P.H., assistant professor of medicine at the University of Pittsburgh’s Lupus Center of Excellence. "People with lupus may be more likely to be physically inactive or develop excessive weight gain from steroids," she says. "Lupus itself can cause increased cardiovascular-disease risks, such as…

  • Lupus Foundation of America Releases New Lupus Awareness Videos; Watch the Lupus-Related Kidney Disease Video

    William Davis
    Good morning. The Lupus Foundation of America (LFA) has created 4 new lupus awareness videos, where people who are living with lupus share their personal stories. In this first video, two people talk about their lupus-related kidney disease. Baakari Wilder is a man living with lupus. He developed the disease while he was starring in a Broadway musical. Carla Vargas describes how she must undergo periodic chemotherapy treatments to manage the health effects of lupus nephritis.

  • Read the Latest in Lupus Research: Potential New Indicators of Lupus Being Studied in Children

    William Davis
    Since the 1970s, researchers have known that lupus patients are at risk for hardening of the arteries (“atherosclerosis”). Some of this risk may be from the increased inflammation that lupus patients have in the bloodstream over many years, but some of it is from the same reasons that hold true for everybody: especially high blood pressure, high blood glucose (sugar), or low levels of "good cholesterol." Taken together, these risk factors are known as "metabolic syndrome," a condition that puts people at high risk for heart disease, diabetes, or both. Some of the medications that lupus…
 
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    On the Road to a Lupus Cure

  • When a Family Member is Diagnosed with Lupus

    9 Feb 2010 | 4:40 am
    Family life inevitably changes when a family member is diagnosed with lupus. Chores need to be redistributed, responsibilities shared, and everyone in the family must try to remain flexible. There will be emotional considerations as well.Open communication within the family about lupus may help to allay fears and help to foster an understanding and supportive environment for all family affected by the disease.Learn steps that your family can take together on this new journey.

  • Watch Videos of the Latest Lupus-Related Heart Disease Research

    5 Feb 2010 | 5:03 am
    People with lupus are at higher risk for developing heart disease than the general population. Several studies have shown that women with lupus have a 5-to-10-fold increased risk of cardiovascular disease (CVD) as compared to women who don't have lupus. In addition, African American women are three times more likely to develop lupus than Caucasian women which increases their risk of developing lupus-related CVD.The Lupus Foundation of America (LFA) has committed significant funds to a vital and innovative research program addressing this often serious and potentially fatal consequence of…

  • Updated Guidelines for Cardiovascular Health for Women

    3 Feb 2010 | 5:42 am
    You know that heart health is important, but when you’re juggling work and home life, keeping heart healthy through diet and exercise can be tough. For people with lupus, especially women, those little slips can spell big trouble.Lupus and its treatment often create problems, says Amy Kao, M.D., M.P.H., assistant professor of medicine at the University of Pittsburgh’s Lupus Center of Excellence. "People with lupus may be more likely to be physically inactive or develop excessive weight gain from steroids," she says. "Lupus itself can cause increased cardiovascular-disease risks, such as…

  • Lupus Foundation of America Releases New Lupus Awareness Videos; Watch the Lupus-Related Kidney Disease Video

    1 Feb 2010 | 6:08 am
    Good morning.The Lupus Foundation of America (LFA) has created 4 new lupus awareness videos, where people who are living with lupus share their personal stories.In this first video, two people talk about their lupus-related kidney disease.Baakari Wilder is a man living with lupus. He developed the disease while he was starring in a Broadway musical. Carla Vargas describes how she must undergo periodic chemotherapy treatments to manage the health effects of lupus nephritis.

  • Read the Latest in Lupus Research: Potential New Indicators of Lupus Being Studied in Children

    29 Jan 2010 | 4:24 am
    Since the 1970s, researchers have known that lupus patients are at risk for hardening of the arteries (“atherosclerosis”). Some of this risk may be from the increased inflammation that lupus patients have in the bloodstream over many years, but some of it is from the same reasons that hold true for everybody: especially high blood pressure, high blood glucose (sugar), or low levels of "good cholesterol."Taken together, these risk factors are known as "metabolic syndrome," a condition that puts people at high risk for heart disease, diabetes, or both. Some of the medications that lupus…
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    lupus « WordPress.com Tag Feed

  • Things I Hate...

    tbone51
    8 Feb 2010 | 7:26 pm
    Many things come to mind (i.e. pants), however right now computer viruses are at the top of my list.  Not quite sure exactly what’s going on, but the virus – probably lupus – is preventing me from posting new napkin doodles to www.napkinville.com for whatever reason, leaving millions of hardworking Americans unsatisfied and irate.  Stay tuned… a picture of a baseball bat in my computer screen may be on the way. A (slight) dramatization of what I've been dealing with

  • dude, where's my car?

    mykindanormal
    8 Feb 2010 | 10:23 am
    every time i go to sleep for the past couple of months i have had some sort of variation of the same dream, i can’t find my car.  it has either been stolen, towed, is mysteriously missing, or i can’t remember where i parked it.  i have been having this same dream so often and waking up feeling so upset by it that it is quite concerning.  so, i decided to do some self-analysis and then some further research on it and my findings turned out being very interesting.  i personally thought maybe these dreams were coming from feelings i am having of being trapped, in my…

  • "You look so much better" and "You look like you are doing well!"

    autoimmunelife
    8 Feb 2010 | 5:27 am
    I’ve heard these statements a couple of times lately. And I was so confused how that could be, considering I’ve had mind scrambling headaches for all of 2010 (or close enough, the first couple of days I may or may not have had them, I can’t remember now), it’s not been an easy year. After hearing the second time a week or so ago I started wondering what it was that was so different about how I looked, and what had changed that I was looking better. The friend who said these things the most recently also said “You were looking so pale, but you’ve got color…

  • Duamne. Societatea aplauda.

    Alex "Sasha Mazzarin The Mouse Mr. Omar Rusu" Rosca
    7 Feb 2010 | 3:43 pm

  • I have a lot to say..

    autoimmunelife
    7 Feb 2010 | 7:47 am
    And no energy to put it all together in a way that would make sense… so I’ll sum it up. Headaches still aren’t gone (started somewhere between Jan 1 and Jan 4… pretty sure it was the 2nd) and they ended up worse again in the middle of the week last week (It’s Sunday today right? That would make it last week? It was the 3rd of Feb or the Wednesday right around then that they got worse again). Had a period only 24 days after the last one.. .so a 23 day cycle, while on birth control. Getting ready to ask doc to take me off the med that is making me stay on the birth…
 
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    Chronic Chick Talk

  • Getting Back on Your Feet

    chronicchick
    1 Feb 2010 | 6:19 pm
    A friend of mine was having a lot trouble keeping on her feet after a divorce. She fought to keep her house during the divorce, but she had to let the house go because she could not afford to take care of the house and her son. She lost her job and it took her over 6 months to find a job. Meanwhile, she put in over 50 applications for a job. During the time she lived off her credit cards and living with a friend. She had to turn off her water and electricity because of not having enough money to pay the bills. She lived on her friend’s sofa bed while her son stayed with a family member. It…

  • Music Monday: Bryan Adams By A Teen Girl

    chronicchick
    31 Jan 2010 | 1:31 pm
    Removed by me Come 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. PS: Because of spamming purposes, the linky will be closed on Thursday of each week at midnight, Malaysian Time. Thank you!

  • Wordless Wednesday: Roses

    chronicchick
    26 Jan 2010 | 6:52 pm

  • Get Organized or Lose Your Hair

    chronicchick
    23 Jan 2010 | 8:47 pm
    After you are engaged, it is important to get organized for your wedding so that you are pulling your hair out. Once you have set a date it is time to buy the wedding invitations to invite the guests for the big day. But you cannot purchase the wedding invitations until you have decided where you will have the wedding and reception. There are thousands of places around the world where couples decide to marry. Once you have chosen the date, it will be time for you ask your family and guests to save the dates. You may decide to get married at your home, church, or a reception hall. All that…

  • Anyone for the Flu Times 3?

    chronicchick
    23 Jan 2010 | 8:38 pm
    For the past week, it has been really bad dealing with the lupus. I could hardly stand all the pain that was overwhelming my body. I felt like I had the flu times 3 all at once. If you have lupus or fibromyalgia you know what I mean. I felt like all of my nerves were shorting out with the fire they were shooting. I hate dealing with all of this day after day I feel like I am going to pull my hair out, but I do not have the strength to pull it out. All I wanted to do was sleep but the pain made that near impossible.
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    Dancing With Butterflies

  • Time Stood Still

    emmyrose
    8 Feb 2010 | 2:46 am
    Everything ran like clockwork… I felt in complete control of my life and it may sound too good to be true but I am living my dream. Everything was perfect just the way I planned them to be. It was the year 2001, I’m a fresh graduate, had my dream job in an international company that pays really well,  my long-time boyfriend and I were planning to tie the knot.. what can I ask for more?? I had everything I ever wanted, I just couldn’t ask for more. But from the moment the pain in my lower body struck and I found myself almost paralyzed, my world began to fall apart..

  • Ski Vacation

    emmyrose
    8 Feb 2010 | 2:28 am
    I need a vacation, actually I want a vacation but of course for someone who is sick like me I just cannot go whenever I please.. since I live in a tropical country I always wanted to experience snow and maybe go skiing. It will probably be a wonderful experience and enjoyable too. I think a ski vacation will be a breath of fresh air and something I would look forward to in the future.

  • Insurance Online

    emmyrose
    8 Feb 2010 | 2:20 am
    Did you know that you can find term life insurance quote online? I just think that everyone should consider getting one just for your own peace of mind. We don’t know what’s going to happen with us in the future so it’ll helps if we have an insurance that can help us when we get old or just in time for immediate need. A small amount today can get you a long way, so check it out!

  • Security

    emmyrose
    8 Feb 2010 | 2:12 am
    Are you protected and secure? In these time when financial turmoil is all around we tend to neglect to save for the future. When it is true that we shouldn’t worry about tomorrow for God will take care of it, it is also true that we need to help ourselves and find some sort of security when we get old or if get sick. It is important to have an insurance and take a look at some insurance quotes and find the one that will match your needs.

  • Weekend Getaway

    emmyrose
    8 Feb 2010 | 2:01 am
    It’s been a while.. I purposely left blogging for awhile to concentrate on getting well. A few weeks ago I’ve been suffering from severe headaches. I had CT Scan and MRI that made me worried again.. Another lupus flare is threatening to ruin my good condition but I only have to thank God that He had made me well again. I’m back at work now and although it’s been a very busy week, I am having so much fun. My college friends and I are planning to have a weekend getaway in the nearby beach in Batangas and we will be traveling with my friend’s new jeep. It’s…
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    Despite Lupus

  • The 2-hour explanation

    5 Feb 2010 | 5:00 am
    So a few of you have asked, after reading Wednesday's post about my afternoon nap moving from an hour and a half to two hours, why? Why do I need more sleep? Why is the standard 1.5 hours suddenly not enough? Why did things change?The short answer is I don't know. Nothing with lupus is set in stone. Sometimes your body just changes, and you can't pinpoint exactly what's going on. In fact, this is one of the biggest complaints lupus patients have about the disease - its unpredictability. I second the motion - not knowing what's coming stinks. But, in my opinion, and in my case of lupus,…

  • Two hours, it is

    3 Feb 2010 | 5:00 am
    Well, folks - there's no denying it. My nap has officially crept back to 2 hours.If you recall, 6 1/2 years ago, around the time of a week long hospital stay, when my doctor declared the cause for my admittance "a pretty close call," I imposed a daily 2-hour nap. My company worked with me to revise my work day so that I could work up until 3pm everyday, giving me time to still be alert enough to drive home and hop into bed before that terrible lupus fatigue hit hard. Of course, I usually stretched my work day until after 4 (because you know how I am; if you don't, chapter 3 will explain…

  • Little known facts are meant to be shared

    1 Feb 2010 | 5:00 am
    While I was very lucky to have been diagnosed with lupus within a few weeks of the initial onset of symptoms (swollen glands, fever, chest pain, achy joints), I know the odds are not in favor of a quick and early detection of a disease like lupus. It often takes people months, if not years, to finally reach a diagnosis, and that's not because they haven't tried. For various reasons, lupus is a tricky one to diagnose. The more common lupus symptoms, when considered individually, can indicate a range of illnesses, many of which are of little consequence, and, thus, are often dismissed by…

  • I can see clearly now...thanks to Henry

    29 Jan 2010 | 5:00 am
    As you know, we lost our little pug Henry a week before Christmas. While we still think of that guy on a daily basis, I've come to realize yet another thing he taught me about life with lupus. I know, I know - I've blogged about Henry's little lessons before - but this time, I'm reminded of one if not the primary reason why I took the steps to write my book, and why I continue to keep this blog. My motivation? Because I want others to know what I didn't know when I was struggling with my disease.I can think of dozens of things that I wish I knew when I was first diagnosed, dozens of things I…

  • Daily dose (of medication)

    27 Jan 2010 | 5:00 am
    In keeping with the drug theme of the week, let me announce that January 2010 makes it official - I've now been diagnosed with systemic lupus for 9 years. And with that diagnosis has come 9 years of daily medication. There hasn't been one day since January of 2001 that I haven't taken medication for my disease. Today, I'm on the fewest number of prescriptions since my diagnosis (just two, plus a baby aspirin and calcium), so the idea of taking as few as 3-4 pills in the morning and another 4 at night makes me pretty darn happy. Because I've taken as many as 17 pills at a time, all prescribed…
 
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    Living With Lupus

  • Up In The AIR!!!

    5 Feb 2010 | 11:20 pm
    Right now, I am awake, while everyone in this house is sleeping. I am having the weirdest bleed pattern ever. Generally for years I didn't have the menstral cycle at all. My daughter is a teenager now, so everytime she gets her period, I get all the symptoms of having a period...then I spot...then it goes away. Today is a WAY different story. I am bleeding so much that a super tampon, liner & I barely lasted 2 hours. Now, I just decided to use the super tampon plus the night pad, so it is a little bit longer in the back, to get more coverage. I folded the towel twice over and it is under me…

  • How it Affected My Child

    27 Jan 2010 | 8:17 am
    When Brittany was younger, there were times where should would be waiting in front of the house b/c she forgot her key, but basically it meant that I probably was in a hospital somewhere and Brittany would wait for someone to get her, if I could get through to someone. Then it became all common. The worse part was that she was starting her teenage life, and you know how kids want to be cool and not wear a jacket?? Wearing ridiculous things for whatever reason, but if I was sick on any day and that could be today, tomorrow or a week later. So if it was snowing, she would sit on the step in…

  • Happy New Year!

    5 Jan 2010 | 7:22 pm
    Happy New Year!!! I know it has been a long time since I have blogged. I have been crazy busy with all of my doctor appointments and my continued battle with social security. I understand that I just have to be persistent, and I shall be awarded at one time in the future (We hope)! Today was a good day for me. I actually got out of bed and took a shower, which is huge for me. I even left the house which is very uncommon for me. I went shopping @ one of my favorite stores. I was so disappointed...I had ten dresses/items to try on. Not even one looked okay. I just looked like an overstuffed…

  • home is where the heart is...

    2 May 2009 | 6:25 pm
    Home is where the heart is...until you run out of money. We are facing foreclosure on our home that we have had for almost 10 years. I was very upset. We can sell it, but I don't want to sell it. Waiting for disability seems to be forever! How can anyone afford to wait for disability? We pay into it for all these years until we need it one day and it takes this long just to tell you no. I know I made several mistakes my life, but my life hasn't always been great to me. I am paying for my pain for not working. I'm going to lose my home. I can't make a partial payment, only a lump sum. I don't…

  • just another day...

    13 Apr 2009 | 8:59 am
    Just another Monday...isn't there a song with that phrase as a chorus? I have a full week ahead of me, also the fact that taxes are due Wednesday. I need to file for an extension, but I have yet to gather all my numbers together. Wonderful, huh? We have had some good and bad news. One of our cars was hit and will probably be "totaled" I'm not too sure if that is good news at all. But now we are down to one car. It was just a long weekend. Easter: our annual egg hunt was successful and both dogs seemed full afterwards. Our older dog was slow on the egg hunt this year, hopefully it doesn't mean…
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    My Life Works Today!

  • Calling All PNW Physician Assistants and Nurse Practitioners!

    maria
    3 Feb 2010 | 2:11 pm
    I recently heard from Kathy Casey, Executive Director of our Pacific NW Chapter of the Lupus Foundation of America regarding the confirmation of a lupus breakout session at the next CNE (Continuing Nursing Education) in the Seattle area this September.  We have been discussing the importance of reaching those medical professionals who work most closely with lupus patients for quite some time  and are thrilled to be the first within the Lupus Foundation to gain such an opportunity! There will be more information coming soon regarding speaker, topic and other details.  If you are a…

  • Why The Pecking Order?

    maria
    27 Jan 2010 | 12:21 am
    We live next to a water way and have more varieties of fowl than you would expect to be here in the suburbs.  With the mild temps this winter and heading into spring, the size of our backyard flocks have increased substantially.  So, too, has our cracked corn budget.  Although we truly enjoy having them all here—mallards to heron—there is a particular behavior they exhibit that really gets my own feathers ruffled.  They peck at each other mercilessly.  I’ve been impressed with the increased number of dialogues surrounding healthcare, lupus, advocacy, events, and so forth found all…

  • Lupus and men: Dr. Oz is making an office call soon~

    maria
    15 Jan 2010 | 11:29 am
    I received an email from Kathy Casey, Executive Director of the Lupus Foundation of America -Pacific NW Chapter letting me know about an event that I want to pass along to all of you: “Hello, We received an email from our National office about The Dr. Oz Show featuring men and lupus. It will be airing on Monday, Jan 18, 2010. In Seattle you can watch this show on KOMO4 TV at 3:00pm. In Portland, it is aired on ABC 2 KATU 3:00 PM and 8:00 PM on KATU-DT2 (DTV Channel 2-2) [Dr. Oz link has incorrect time] Please check this link: http://www.doctoroz.com/find-station to watch show timings…

  • Interview opportunity discussing insurance lifetime caps

    maria
    11 Jan 2010 | 11:54 am
    An announcement from our local Scleroderma Chapter: Have You Experienced a Lifetime Cap on Your Health Insurance? The Scleroderma Foundation is interested in speaking with scleroderma patients who currently have lifetime cap insurance policies and/or who have experienced a cap limiting their access to healthcare. Individuals who fit the description(s) above are asked to contact Sondria Berman toll free at 1-800-722-4673 ext. 48 or by email at sberman@scleroderma.org to discuss a possible media opportunity.  All candidates should contact the Foundation on or before Tuesday, January 12th.

  • Focusing on the pieces helps me get to my big picture

    maria
    11 Jan 2010 | 12:34 am
    It seemed like a good idea at the time. I picked out a beautiful 2000 piece puzzle of Neuschwanstein Castle in Germany for my mom this year for Christmas.  It has been years since I did one and thought that it would give us something fun to do together.  The together part is working out fine, but the “fun”?  We’re still waiting for that to kick in. As I painfully search for pieces with the exact patterns, shapes, images, etc., I hunch over a disaster that frustrates me into a punishing backache.  I have it set up on a table in our house that takes up the most part of our family…
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    My Lupus Update

  • My new favorite item

    20 Jan 2010 | 9:17 am
    My new favorite gadget. I have to say I LOVE, LOVE, LOVE this. I hate having to ask my husband to open my pill bottles and with my kids in the house I don't feel right about getting regular caps. This tool is a wonderful gadget. The magnifying glass may come in handy some day but for now it just opens my bottlesClick here to learn more

  • immunosuppressant

    13 Jan 2010 | 8:20 am
    I have a love hate relationship with my immunosuppressants. I LOVE what they do to me.. I feel so much better when I'm on them. My Lupus rarely rears it's ugly head and I have enrgy and no pain. I just feel fabulous.My hate is because if you get sick you have to go off of them until you are better. So right now I take one shot a week. On Monday night I knew I should have held off a day or two because my brother and his family spent the whole weekend at my house and his wife & both kids had a cold. But I thought, no... I wont get it. Sure, I've kissed, hugged, shared food with my nephews but…

  • Why can't I sleep????

    7 Jan 2010 | 12:56 pm
    You know what sucks about not being able to sleep? that you can't get up and do anything cause you will wake others up and you are begging your body to just drift off. not being able to sleep is sign one that a flare is coming. Some would think that my body would be CRAVING rest when a flare is on it's way, but no. Mine says "time to get up".I am a greedy sleeper. I like my sleep and I do not like to loose one minute of it, so you can imagine that I am VERY cranky today. I have a big weekend ahead and i don't have time for a flare. Hmmmmm.... now that I type that, I realize I say that every…

  • Joints

    5 Jan 2010 | 2:04 pm
    JOINTS: (N)1. junction between bones: a part of the body where bones are connected, e.g. the knee, elbow, or skull.2. junction between segments of invertebrate body: any of the points of connection between movable segments of the body in an insect, spider, crab, or other invertebrateAs I see this definition of the word "Joint" it makes me chuckle. Joints to me are more than just where the body connects... they are a source or REAL pain. My last chest xray showed signs of arthritis in my back- wait your back has joints? I am always shocked to learn something is a "joint" because I never really…

  • I'm back

    4 Jan 2010 | 11:14 am
    It's a shock I know. But I think it's time to start keeping track of all that is going on in my Lupus world. I sure have missed having a place to dump it all and recent comments made me realize that people are actually reading this!The remainder of this year was ok. I had some severe flairs and one that lasted several weeks. I am getting better at managing them, but sometimes the pain is just so unbearable. I also decided to help out with the Seattle Lupus Walk in October and had such a great time I decided to sit on the committee again. It was so awesome to see our ideas and hard work become…
 
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    The Life of a 20-Something With Lupus

  • Shady Business

    6 Feb 2010 | 4:29 pm
    I sit here exhausted, but I wanted to give an update.My hemoglobin is on a downward slope. In the span of 24 hours, it went from 68 to 62 to 54 (6.8 to 6.2 to 5.4). I have had bloodwork done for many different viruses, so I suppose when I go back to the hospital on Monday morning they'll be able to tell me if I have any of these viruses. Also, what started off as a mild blockage in my left ear turned into severe blockage in both ears and terrible pain.The doctor that saw me (a doctor I had never met before) and told me that my severe ear (and subsequently, face, neck, behind the ears,etc)…

  • Hemoglobin CRASH

    2 Feb 2010 | 10:36 am
    Ok, now I'm worried.I did my monthly bloodwork today. I did it this morning, dropped it off at the hospital, then headed to school to sign up with the HRPA. Thank goodness class was cancelled today because I totally would not be able to make it through the day.Well my nurse called me just a few moments ago. My hemoglobin is currently 68 (or 6.8). This is horribly low..a bit over HALF of what it should be. I have been feeling exhausted these past few weeks. What is going on here? What's happening to me?PLEASEEEEE don't be a flare....PLEASEEE! This is bad news all around. If its not a flare and…

  • Achoo!

    30 Jan 2010 | 10:40 am
    I'm at home from work today nursing this cold. I felt the cold coming through on Thursday morning. I planned to stay home from school that day, but I later learned that there was an in-class assignment worth 5%, so I did not want to miss that.The next day I decided to tough it out and just go to school. I knew that this would be my last labour relations class before the quiz next week. It is never a good idea to miss the class before a quiz. Another incentive for me to go to school was knowing that my Dad would be able to pick me up from school. So now my nose is stuffed and runny, the back…

  • Left Speechless

    29 Jan 2010 | 4:44 pm
    I have a pretty bad cold. My nose is blocked. When I talk I sound like I'm plugging my nose with my fingers. I'm taking tylenol, and I'm using one of those saline spray things to clear my sinuses. It's the first time I've tried the spray. The idea of shooting liquid up my nose has never been appealing to me, but it works quite nicely for me.I'm sure I have mentioned the fact that I've stayed home a couple of times since this semester started. I haven't exactly been 100%. I try to keep a smile on my face in hopes that no one will notice. Well, people noticed.In my labour relations class today,…

  • Needed a great big sleep & face care!

    26 Jan 2010 | 8:13 pm
    While I was at work on Saturday, I was utterly exhausted. At the end of the work day, I still needed to head over to Walmart to pick up my multivitamin (replavite). So my Mom and I headed over there before heading to my Dad's workplace to pick him up (while my Dad was driving me to work that morning, the axle on the car broke! So it was in the shop).When we got home, I went straight to bed. It was probably 6pm or so. My mom woke me up at around 8pm or so to see if I wanted anything to eat. I was not that hungry, but I knew that I had better eat something or else 2am would come around and I'd…
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