Lupus Fact & May 17, 2013 Blogger “Put on Purple” Hall of Fame

Lupus Awareness Blog No. 17 – Put on Purple

Putting it on For Lupus

Putting on Purple we “POP” for lupus today,
About lupus awareness we have something to say!
Supporting our sisters with lupus this way,
Until there is a cure to take lupus away.

We’ve rounded up purples and violets and hues,
Until there’s nothing purple that we cannot use!
Donning purple and orchid and grape in bright array,
We show off our outfits on the Seventeenth of May!

Join us in spreading the word all around,
Lupus is auto-immune and everywhere found.
Especially in women, and in minorities we know
That lupus is always more likely to show.

Help us today, all your colors display,
Pursuing the cure that will end our dismay.
Raising awareness and spreading the word,
Until all who have lupus can someday — be cured!

© Lupus Adventurer ~ May 17, 2013

Put On Purple ~ Blogger Hall of Fame

http://lalupuslady.com/

http://alifebeautifullyimperfect.wordpress.com/

http://queen-of-arts.blogspot.com/ wearing purple in support of friend Melissa who has lupus

http://www.audcole.com/2012/05/put-on-purple.html

http://socialadamantium.wordpress.com/2013/05/17/pop-put-on-purple-for-lupus-awareness-day-is-today/

http://blog.allsup.com/2012/05/wear-purple-during-lupus-awareness-month/

http://2brokelagirls.blogspot.com/2013/05/put-on-purple-for-lupus-awareness.html

http://2brokelagirls.blogspot.com/2013/05/put-on-purple-for-lupus-awareness.html

http://www.gofundme.com/2kava0

https://www.facebook.com/LupusFoundationofAmerica

http://blog.avectra.com/

http://thereafterish.com/

http://lillypad.lilly.com/

http://myemail.constantcontact.com/Help-us-Paint-the-Town-Purple-.html?soid=1101640510398&aid=OKhCPM9NBaE

http://www.pointlesscafe.com/2013/05/wearing-purple-for-lupus-awareness-day.html

http://pinterest.com/pin/136022851218010744/

https://pinterest.com/pin/119697302568009441/

http://www.ashleyispolishaddicted.com/2013/05/purple-for-world-lupus-awareness-day.html

http://micromunchies.blogspot.com/2012/05/purple-pastries-for-lupus-awareness.html

http://valverdestyle.com/put-on-purple/

http://itssonotsexy.tumblr.com/post/23295720637/i-putonpurple-today

Lupus Truth No. 17 – Drug Induced Lupus is Reversible

http://www.availclinical.com/news/lupus-awareness-month/

Coping with Lupus: Drug-induced lupus is a lupus-like disease caused by taking specific prescription drugs.

Drug-induced lupus is reversible!

The Lupus Foundation of America (LFA) reports that “drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications. The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.”

To learn more about this lupus fact, please read my post from  May 17, 2012.

Lupus Fact & Blog of the Day No.16 – Discoid Lupus & Molly’s Fund – More than a Blog

Lupus Awareness Blog No. 16 – Molly’s Fund Fighting Lupus & Molly’s Blog

Oregon recognizes May
as Lupus Awareness Month!

Today, we turn the spotlight onto Portland, Oregon and Molly’s Fund and Molly’s Blog.  Molly was in her twenties and just beginning a promising career as an opera singer.  She suddenly became ill with multiple infections and overwhelming multi-system health problems that severely interrupted her ability to perform as a singer.  After a very rough year and several doctors, she saw a rheumatologist who diagnosed her lupus.  After her diagnosis, Molly and her mother co-founded the beginning of Molly’s Fund.

Molly’s Fund Fighting Lupus is a noteworthy regional non-profit foundation in the Northwest United States that seeks “to educate the public about lupus, partner with the medical community to push for earlier, life-saving diagnosis, and to spur governments and foundations to fund research toward a cure.”   They sponsor annual lupus awareness campaigns in Oregon, Washington and Idaho, and give 90% of the funds they raise to outreach and support programs.

Annual lupus awareness events Butterflies In the Park and Serving Up Style and other events and programs draw attendance of over 20,000 people in the Portland area each year, while raising funds to support earlier diagnosis, patient support and advocacy, and a client assistance program.   They sponsor support groups in the Pacific Northwest area of the United States and offer weekly online support groups — one for patients and one for family, friends and caregivers of lupus patients.

Molly

Molly’s blog @ www.mollysfund.org/blog/

“As I am able, I will share with you my personal journey and challenges with lupus.  I know first hand how difficult dealing with lupus can be, and the unique struggles you may be facing.  My blog is about sharing and I will do my best to give you  insights, hope and support.”

Lupus Truth No. 16 – the most common type of lupus is discoid

Coping with Lupus: Discoid lupus (the most common form of skin lupus) accounts for about 10 percent of all cases of lupus and occurs in 20 percent of those with systemic lupus.

My discoid lupus was most pronounced before I began taking Plaquenil, and after this first baseline drug treatment started, my rashes cleared up on my face, eyelids, ears, hairline, scalp, chest, arms and thighs.

Now, occasionally a few discoid rashes develop between my fingers, on my forehead or cheek, neck or my hairline.  They are treated with topical prescription steroid creams, and heavier application with cotton gloves at night.

Scaly Rash, Steroids and Softening Sugar Scrub

A recent discoid lupus rash outbreak on my hands has been especially hard to get under control and kept spreading to larger areas of my hands over about a two month time.  The intensely itching and burning rash circled my fingers and was crusted and flaking constantly, so the dry thickened surface was making it hard to get steroid cream to the active layer of the rash underneath.

Every time I washed my hands or got them wet in the kitchen I was wincing, and the skin was beginning to get extremely fragile and crack open multiple places and bleed.  I was bleeding onto things I touched all day long, no matter how much hand lotion and steroids I applied.  I was slathering on the prescription steroid cream, but it didn’t seem to get through the surface of the dry itching rash and was doing very little good.

Longing for
baby-soft hands

In desperation, decided to try gently rubbing a hand manicure sugar scrub sample I received at the beauty supply store on Mother’s Day weekend over the rash to remove the dead skin from the surface of the rash.

It was unexpectedly soothing, and gently softened and removed the dead, dry cracked surface of the exposed rash – allowing me to apply the steroid cream directly to the fresh soft surface of the rash underneath, without dead skin layers in between.  The sugar scrub did not irritate or make the rash more raw, and had a surprisingly immediate healing effect.

Now, the steroids I am using on the rash are more effective and my rash has quieted down.  Within one day of using the sugar scrub, it was much improved and stopped intensely itching.  The aggravating pain and raw, cracking rashes on my hands, quickly began healing and reducing.

I repeated light application of the sugar scrub the next day to remove the overnight buildup on the rash surface, and this again helped me get a more effective application of the steroids to the rash.

It has now been 3 days since I first used the sugar scrub before applying steroids, and I can hardly believe how much the rash on my hands has healed.  It no longer hurts or itches, and has stopped spreading.  The only crusted areas are the spots that had involved deeper layers of my skin, but even those are finally healing and improving.

To learn more about this lupus fact, please read my post from  May 16, 2012.

Tomorrow it is finally time to POP – Put on Purple – for Lupus May 17th!

Remember to don your head-to-foot purple colors to “POP” — Put on Purple – for Lupus tomorrow, Friday, May 17th!

Lupus Fact & Blog of the Day No.15 – Dominate Your Diagnosis & Four Types of Lupus

Lupus Awareness Blog No. 15 – Dominate Your Diagnosis

Working on daughter’s quilt

Today I want to introduce you to a fellow lupus blogger, Leslie.

Leslie loves to quilt, do wool applique and make handmade cards.   She was diagnosed with systemic lupus over ten years ago and faced a “huge adjustment” from “being an independent person” and she began to realize how difficult it was for her to ask others for help.

She knew that she and others in her community with lupus needed support, and started facilitating an LFA lupus support group in Pennsylvania.

In Leslie’s search to stay out of the “rut” that chronic illness can easily put us into, she read “Being Sick Well” by Jeffrey H. Boyd, and gained a helpful perspective.

She describes a defining aspect of her outlook and blog vision in her first post.

“The only course of action is to keep the diagnosis under control-govern it, rule it, dominate it.  This is something we have to choose to do day by day sometimes moment by moment as we strive for autonomy from the diagnosis of chronic illness.”

“In this blog we will explore together strategies that have the potential to help us reclaim our lives, body, soul and spirit, from the diagnosis.”

Loves to quilt & applique

To find out more about Leslie’s interesting story, read a three-part biographical post series about her lupus journey.

1. Part One: Pre-diagnosis: Rashes and Miscarriages
2. Part Two: Diagnosis and Rheumatologist
3. Part Three: Support Group, Work, Reynauds, Sjogrens and Faith

I trust you will find her blog an encouragement and refreshing mix of facts and faith as you join her on her journey.  Her blog is one of my “faves” and is always an uplifting read.

Lupus Truth No. 15 – The Four Types of Lupus

Coping with Lupus: There are four distinct forms of lupus.

Systemic lupus is the most common type of lupus. The other three forms of lupus are cutaneous, drug-induced and neonatal.

Drug-induced lupus and neonatal are not a sustained lupus, but systemic and cutaneous lupus are auto-immune conditions that tend to stay with a patient throughout their life, since there is no known cure yet for the latter two forms of lupus.

1. Systemic lupus – organ and non-organ threatening
2. Cutaneous lupus – non-systemic discoid lupus
3. Drug-induced lupus – caused by certain medications known to produce temporary lupus
4. Neonatal lupus – affecting newborns born to mothers with lupus

To learn more about this lupus fact, please read my post from  May 15, 2012.

Plan to POP — Put on Purple — for Lupus May 17th

Perhaps change to your great grape Juicy Couture purse to get ready to “POP” — Put on Purple — for Lupus this coming Friday, May 17th!

Lupus Fact & Blog of the Day No.14 – Lupus Survival Guide & Toning Up

Lupus Awareness Blog No. 14 – Lupus Survival Guide

Today’s lupus blogger, Marisa, is no novice to writing and is an often published author of magazine articles.  Marisa has a great blog  about writing at http://wordslingergal.com.  About a year ago, she published a blog post about her lupus, 11 Years Later Its Time To Tell the Entire Story.  Marisa now has just launched a new blog about lupus, www.LupusSurvivalGuide.com.

Marisa is such an excellent writer, I see no reason for me to describe her blogs, since she is such a skilled writing professional.  Instead, her own articulate words can speak for themselves:

Selected blog excerpts by Marisa:

“Wordslingergal used to be a site where I would post my published newspaper and magazine articles, but has evolved through the years. Today it is a website/blog that will be used to reach out to other writers or those who want to become a writer. My goal is to have interesting articles, links, and guest bloggers that discuss a variety of writing topics.”

“Although I had always enjoyed writing, I never thought it would become my career. In fact, I went to college for nursing! But, life happened – illness happened – and I was forced to stay in bed for a long period of time. It was during that quiet time when an old flame was reignited… my love for writing.”

“What began as volunteer writing for a South Florida newspaper eventually turned into a position as head writer and assistant editor. One published article turned into 250 over time, and I have been featured in Christianity Today, The Good News, Eating Well Magazine, WebMD, MSNBC, and many more as both the writer and the interviewee on several occasions.”

“When I began writing, I attended several writing conferences – something I would absolutely recommend to every writer. It was during those conferences that I learned about freelance magazine writing, book writing, book proposals and business writing. I began to branch out and write freelance web content, resumes, medical writing, book proposals, financial and magazine writing.  I have had Lupus for 12 years and consider myself a survivor and thriver.”

A  little more about Marisa

Marisa wants her new lupus blog to educate people about the disease and offer recent lupus news and breakthroughs.  She also has been an official support group leader for the Lupus Foundation of America, South East Florida Chapter, and served as a member on their Board of Directors.

Today, Marisa works from her New York home as a freelance journalist and editor, as her health allows, and she speaks publicly about Lupus.  Her new book about lupus is available through online book retailers and her blog.

Lupus Truth No. 14 – Lupus and Daily Exercise

Coping with Lupus

Coping with Lupus: People with lupus are usually encouraged to engage in appropriate daily exercise to keep up muscle and bone strength.

Exercise is not intuitive for those with auto-immune health challenges like lupus, rheumatoid arthritis or fibromyalgia.

Waking up each morning with joint stiffness and pain, the first thought on my mind is definitely NOT exercise!  In fact, my rheumatologist challenged me a couple of visits ago to step up my exercise routine to a daily schedule.  Perhaps my weight hitting a second all time high had something to do with his insistence.

Although I have not met the daily goal to get on the bike, I am much more aware and make sure I am exercising mildly almost every day.

Get some exercise daily!

Unfortunately, bicycling waited for a couple of months after I slipped and had a major hip sprain.  My absentminded (Lupus!) brain forgot I had just mopped up a spill and walked right on top of it – and I went flying.  During the fall, it felt like my gyrating hip was trying to break, and the strain left every muscle in that hip and thigh sore for weeks.

The great news was that my hip was not broken, and that neither hip showed osteoporosis nor more than a hit of osteoarthritis, even after decades of taking steroids!  My physician sent me off to the chiropractor to “tune up” my wrenched spine and hip, and I have seen him weekly since the fall.  Slowly, I started moving better again, even after slipping on a dryer fabric softener sheet with the strained leg forward sliding into the splits (ouch!) and once more on my wet patio.

My milder yoga routines kept up, along with paying more attention to eating a lean healthy diet.  I have dropped 14 pounds in the past couple of months by exercising a little more and sticking with the guidance of a well-known weight loss program.  Now, my healing hip is ready for cycling again and maybe this will “kick-start” phase two of my weight loss – shape up project.

It took a while to get all this extra weight on, and it surely will take more time to get it off.  It was a sad realization that I was elated because I had finally lost enough weight to get back into my FAT clothes!  The goal is stills somewhere pretty far down the road.

To learn more about the truths of lupus and exercise, please read my post from  May 14, 2012.

Plan to POP — Put on Purple — for Lupus May 17th

Remember to pair up your purple socks to get ready to “POP” — Put on Purple — for Lupus this coming Friday, May 17th!

Lupus Fact & Blog of the Day No. 13 – Flow on Lupus and Fatigue

Lupus Awareness Blog No. 13 – Miz Flow’s Life of a Thirty-Something with Lupus

The Lupus blogger in today’s spotlight is Flo, a self-described “30-something year old female with Lupus!”  Her blog www.flowonlupus.com chronicles her lupus journey that started when she was just a young teen, shortly after becoming class president and 8th grade valedictorian. That summer, her parents bought her a bike, and she recalls riding “throughout the city every single day of that summer.”  By November, she was paralyzed with fatigue, sometimes having to crawl from her bed to other rooms.

Eventually Flo was diagnosed with Lupus Nephritis, and started dialysis.  Along the way, she has experienced many extremely severe lupus manifestations and surgeries.  She reflects, “Little did I know what else was in store for me.”

She recently graduated from college,  followed by a long-awaited kidney transplant.  She tells her readers, “I am so excited about what the future holds” and what “just life in general has in store!”  She hopes to apply her recent Human Resources degree to a recruiting job her not-t00-distant future career.

Miz Flow

“Miz Flow” as she dubs her blogging persona, is an amazing lupus patient who has succeeded in battling the many challenging faces of lupus, and has remained positive and hopeful.  Flow started her blog in 2007 when she was in her mid-twenties, and it is an excellent resource for young lupus patients and their families.

You will like the candor and sincerity of her honest blogging, as well as the refreshing diversity of topics and interests of her posts that focus outside the lupus in her life.

Lupus Truth No. 13 – Fatigue impacts employment

Waiting on Fog to Clear

Coping with Lupus: As many as 80 percent of people with lupus experience fatigue. For some, fatigue can be debilitating, even to the point of forcing them to stop working.

It is ironic that this is the lupus fact for today!  I am sitting at home, waiting on the mental shakiness of a severe morning CNS flare to pass, so that I can try to telecommute for the afternoon.

Earlier, I woke up in a near state of stupor, and infused with diffuse joint pain and aching from head to foot.  I am so tired that I think could work up a sweat just lifting my fingers to type.  Shall we call this bone-tired fatigue?

Along with today’s whopping lupus flare is the invisible scrambled state of my mind.  My cognition is in spurts and starts — putting two thoughts together is incredibly slow and difficult.  Typing this blog post is requiring unusual mental effort, while in-between typing each sentence my fatigue is making me fall asleep.  Wow, am I exhausted!

Eating a lean lunch of mixed fruit, ham/cheese rolls ups, Triscut crackers and tea did not seem to clear my mind or revive my body.

In a bit, I am going to try to use my indoor cycle trainer in first gear peddling very slowly for a few minutes, to see if I can get my body and brain to re-connect.  The way my balance and coördination are impaired now, even this will be difficult.

I have some analytical writing work to do this afternoon that is still way too difficult in the current the state of my wobbly brain and impaired focus.  I have prayed and asked for God’s help to meet my obligations and responsibilities, and to make the hidden metabolic miracle of quieting this flare to take place.

To learn more about this lupus fact, please read my post from  May 13, 2012.

Plan to POP — Put on Purple — for Lupus May 17th

Remember to dry-clean your purple duds to get ready to “POP” — Put on Purple — for Lupus on this Friday, May 17th!

Lupus Fact & Blog of the Day No. 12 – Not Supermom on Mother’s Day

Lupus Awareness Blogger No. 12 – Juli, NOT Supermom on Mother’s Day

Today we meet Juli, who spends a great deal of her adult life on television.  A couple of years ago she was diagnosed with lupus, and has received Benlysta infusions.  I like that her blog is more about life and her motherhood than lupus, with a little lupus on the side.

Her blog tells us about her successful career, “first as an anchor and reporter for news stations in Boston, Miami, and New York…but most recently as the host of Parents TV… a lifestyle show seen nationwide. I’ve interviewed celebrities and politicians…covered riots, murders, hurricanes, and presidential campaigns.” In the middle of her career she had two kids, and explains her extreme dedication, and how she “was rushed right from the anchor desk to the hospital to give birth. “

She always felt “I can have it all…kids, career and marriage!” Until, recently she realized “the more balls you juggle… the more you drop” She felt she was “dropping A LOT of balls.”

After serious soul searching she left her news career and now has more time with her children, 8-year-old Daniella, and 5-year-old Dylan.  Now, her blog, NOTSuperMom.com is almost like another child to her and she admits, it is sometimes tough to juggle.

I think you will find Juli’s tales about her life, family and lupus an interesting read and an inspiration like I did.

Lupus Truth No. 12 – Lupus and multiple medications

Diagnosis and Treatment of Lupus:  Successful treatment of lupus often requires many medications.

A new treatment for lupus was approved recently, and nearly two-dozen clinical studies are underway to develop a full arsenal of treatments.

My treatment plan and combination of drugs used to control lupus and its various symptoms has changed over the years to respond to the variations in my lupus activity, symptoms and organ involvement.

To learn more about this lupus fact, please read my post from  May 12, 2012.

Plan to POP — Put on Purple — for Lupus May 17th

Remember to put on your am amethyst pendant to get ready to “POP” — Put on Purple — for Lupus on Friday this week, May 17th!

Have a Happy Mother’s Day!

Lupus Fact & Blog of the Day No. 11 — Butterfly Lessons & the Discrimination of Lupus

Lupus Awareness Blog No. 11 – Butterfly Lessons

Katina

Today we focus on a dynamic lupus blogger named Katina and her blog, Butterfly Lessons.   She was diagnosed with lupus at 14 years old, and after the tragic loss of three young friends, she decided “that no matter what lupus threw at me in the future, I was going to embrace life.” She has an outstanding support network, but talks about the wearisome experience of “being sick, tired, and sick-of-being-sick-and-tired.”  Explaining her positive outlook despite the troubles of lupus, she says, ” I could not do anything about having lupus, I could control whether or not I enjoyed life.”

Her personal life goals have “morphed” over the years due to the realities of living with lupus.  But lupus did not stop her from aspiring to high goals.  After high school, she went on to college, then earned a doctorate in American politics and now teaches courses on political communication in education research, overseeing several research programs and the training and development of doctoral students.

Katina is very involved with the Washington, DC chapter of the Lupus Foundation of America.  Her blog is her way of “sharing my story and providing helpful tips and lessons learned to others on the same road” and she hopes “that Butterfly Lessons touches your life in a positive (fabulous) way.”

Lupus Truth No. 11 – Lupus Discriminates!

Diagnosis and Treatment of Lupus: African Americans, Hispanics/Latinas, Asians and Pacific Islanders, and Native Americans are diagnosed with lupus two or three times more often than Caucasians; however, lupus affects people of all races and ethnicity.

The Lupus Foundation of America website is my data source for the charts, where it indicates that “Lupus is two to three times more prevalent among people of color, including African Americans, Hispanics/Latinos, Asians, and Native Americans.”  Unfortunately, the highest lupus incidence and mortality rates are among elderly black women.

This chart demonstrates the unfairness of lupus in the prevalence and incidence of lupus in women of color.

To learn more about this lupus fact, please read my post from  May 11, 2012.

Plan to POP — Put on Purple — for Lupus May 17th

Remember to pick out a purple polo shirt to get ready to “POP” — Put on Purple — for Lupus on Friday, May 17th!

Lupus Fact & Blog of the Day No. 10 – Ten Minutes for World Lupus Day!

World Lupus Day – Lupus Awareness Blog No. 10 – YOUR blog or Facebook, YOUR pledge and Ten Minutes for Lupus

Today the featured blogger is YOU!  Today is World Lupus Day, so what can YOU do to help promote lupus awareness?  You are only one person, but a single voice can make an impact in spreading lupus awareness.  Lupus awareness saves lives.  So, take ten minutes to make a difference.

How?

Share World Lupus Day with YOUR blog readers or YOUR Facebook followers by copying the four lines of information below into a post on YOUR blog, Facebook page or email to your friends and family:

Today is World Lupus Day!  Do you have just ten minutes for Lupus?

1. Learn about Lupus, an autoimmune disease that affects 1 out of every 150 people, spend 5 minutes clicking on the link to the Lupus Foundation of America to read Could You Have Lupus?

2. Please read & sign the Lupus Awareness Pledge on the official World Lupus Day Pledge page.

3. Then, tell your friends, loved ones, blog readers or Facebook friends what you learned about lupus by email or post.

Lupus Truth No. 10 – It is expensive to treat lupus!

The Diagnosis and Treatment of Lupus: Lupus can be an expensive disease!

The Lupus Foundation of America (LFA) reports that “the average annual cost to provide healthcare for a person with lupus is $12,643, and rises to nearly $21,000 when lost work productivity is included.”

However for those of us who are receiving the new biologic drugs, the real cost to our insurance companies is now many times greater than treatment with the standard medications included in the LFA’s estimates.

The average annual costs to a patient’s insurance company for monthly infusions of the new just-for-lupus drug Benlysta can run anywhere from $40,000 to over $100,000 per year!  The hospital where I get my Benlysta infusions bills my insurance company every month for somewhere between $8,000 and $11,000!

It can cost dramatically less over all for infusions given in a doctor’s office, but with generally much higher patient co-pays and much lower charges billed to the insurance company.  However, my insurance company will only pay when it is done at a hospital.

I continue to lobby for the logic of my insurance company agreeing to pay the same amount if infusions were to be given at my Rheumatologist’s office!

Costs of Treating Lupus

I have to admit that I am not noble enough to pay the increased cost to save my insurance company (a third-party administrator handling the self-funded health insurance for my employer) the difference.  Benlysta costs my employer MORE THAN MY SALARY every year!  (I have been brave enough to point this out to my employer, and still they keep me around!)

For this reason, unfortunately, many insurers and public funded health coverage plans around the world are not yet agreeing to pay for Benlysta.  It is simply a matter of the math, and the bottom line on the insurance coverage company’s corporate balance sheet!

We can only hope that enough insurance companies will pay for it, and that the demand is great enough that the costs of production can be reduced over time.  If it is successful financially for the drug company, it may in turn become less expensive, and eventually become more affordable for patients who need it.

To learn more about this the costs of lupus medications, please read my post from World Lupus Day 2012 on  May 10, 2012.

Plan to POP — Put on Purple — NEXT Friday for Lupus May 17th

Remember to organize your orchid accessories to get ready to “POP” — Put on Purple — for Lupus on Friday, May 17th!

Lupus Fact & Blog of the Day No. 9 – Despite Lupus and Arthritis

Lupus Awareness Blog No. 9 – Despite Lupus and Arthritis

Sara

Today, our spotlight is on Sara, successful lupus blogger and author of “Despite Lupus” and blog with the same name.  Her book is a “must read” on every lupus patient’s list!  In it, she details steps that helped her regain a healthy lifestyle and unravel the effects of what she calls “four years of running my body into the ground.”

After pursuing a demanding career as a television producer, she realized she was “fighting life, not living it.“  Her own words tell the story well,

“Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I’m proud to say that I’ve reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal.

Despite Lupus

A native of Indiana and graduate of the University of Notre Dame, she resides in Alexandria, Virginia with her husband, two young daughters, and pug dog.  Check in on Sara’s wonderful lupus blog, and perhaps check out a copy of “Despite Lupus.”  It is available in paperback, or in Nook, Kindle or I-pad format.

Lupus Truth No. 9 – Most Lupus Patients Experience Arthritis

Diagnosis and Treatment of Lupus: More than 90 percent of people with lupus will experience joint and/or muscle pain that can be disabling.

Lupus Arthritis

Lupus causes inflammation in the synovial tissues inside joints of fingers, wrists, feet, ankles and knees, but unlike its auto-immune cousin Rheumatoid Arthritis, Lupus does not cause erosion of the bones.   As a result of this inflammation, non-erosive arthritis can develop that causes pain, stiffness and swollen joints.

To learn more about this lupus fact, please read my post from  May 9, 2012.

Plan to POP — Put on Purple — for Lupus May 17th

Remember to wash up your lilac colored laundry to get ready to “POP” — Put on Purple — for Lupus on Friday, May 17th!

Lupus Fact & Blog of the Day No. 8 – Daily Living with Lupus & Rheumatologists

Calla Lillies

Lupus Awareness Blog No. 8 – Daily Living with Lupus

Today, our attention turns to an established lupus blogger named Jennifer.  She describes herself as a 50-year-old wife, mother of three and grandmother of eight.  Her desire to promote lupus awareness motivates her to blog, so that “people will learn the harsh realities of the disease” and how it runs in families.

Jennifer’s blog backdrop is beautifully splashed with the vibrant purple colors of artist Carol Cavalaris’ drawings of butterflies and calla lilies.  [Cavalaris was the subject of a post on this blog a year ago.  She related to me that her sister-in-law with lupus was her inspiration for using butterflies in many of her works.  A successful professional graphic artist, you can read more about Carol Cavalaris in my July 7, 2012 post.]

Jennifer spreads the news about how lupus predominantly affects women, and shares how she hopes her “seven granddaughters and one grandson” never “have to go through what I have.” This thought about her young family members motivates her to blog, “to make people more aware, and to help find a cure” in her lifetime.

One caveat about her blog.  She warns, “please enter this blog with an open mind and know that I am writing from the heart about my own experience with the wolf (as lupus is called). There will be good days and bad days and I will try to share them with you.” It seems that she does a good job of doing just that.

My suggestion?  Click on over and do as she invites: “relax and enjoy the blog,” Daily Living with Lupus.

Lupus Truth No. 8 – Rheumatologists Treat Lupus

Diagnosis and Treatment of Lupus: Lupus is usually treated by rheumatologists, physicians who specializes in conditions affecting the joints and muscles.

Most lupus patients see several different doctors over several years before they finally get an accurate lupus diagnosis.

Rheumatologists Treat Lupus

My family doctor, who finally suspected an autoimmune cause to my health problems, referred me to a rheumatologist who specialized in treatment of autoimmune diseases such as rheumatoid arthritis, gout, and lupus.

Having a single doctor treat all my symptoms helped in reaching my diagnosis, when he finally recognized the lupus might be the single cause of problems with many seemingly unconnected systems lupus was attacking.  In the couple of years before my lupus diagnosis, my family doctor treated me for recurring sinus infections, asthma/bronchitis, urinary infections, widespread severe rashes, inflamed joints, pleurisy, nasal and mouth ulcers, and mobility challenges from intense joint pain.

“Not Medically Responsible”

My doctor told me that continued treatment of these medical problems with recurring high dose steroids and pain killers was “not medically responsible.”  He continued to dig and search for answers the led to a referral to my rheumatologist and the beginning of treatment for lupus while a diagnosis was still being confirmed.  It still took another specialist conferring with my rheumatologist to finalize my pending lupus diagnosis.

To learn more about this lupus fact, please read my post from  May 8, 2012.

Plan to POP — Put on Purple — for Lupus May 17th

Remember to splash on the vibrant violet colors to get ready to “POP” — Put on Purple — for Lupus on Friday, May 17th!