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. 6 – Lupus Chronicles and Lengthy Diagnosis Times

Lupus Awareness Blog No. 6 – Nurse Annie’s Lupus Chronicles

Today, I would like to introduce you to lupus patient, blogger and freelance writer Annie.  In her 20-year nursing career, she gained knowledge and tools that equip her to “advocate fiercely for patients as they are often caught in the maze of diagnostic tests, etc.”

Her blog has a great feature.  On its “Contact Me” page, Annie invites readers to send her a question about lupus, and she will respond with information based on her experiences as a patient and a health practitioner.

Nurse Annie

She explains to her readers, “Feel free to ask me something that you might not want to display publicly; remembering that any information we exchange will be held in the strictest confidence and will be sent DIRECTLY to my inbox.”

A nurse’s perspectives on lupus

However, I respect how Annie clearly and carefully draws the ethical line to avoid the unlicensed practice of medicine and to refrain from attempting to give specific patient’s medical advice.  Instead, she encourages her readers see their own doctor about their medical needs.  Nurse Annie urges, “Your physician knows YOU.  I know a thing or two about chronic illness and ways to cope with it and tips for interpreting…”

Nurse Annie has the knowledge to translate medical jargon, what she dubs “doctor-speak,” into simple, plain English.

Annie has a good emerging blog presence and a steadily growing reader base.  You just might enjoy reading her interesting and informative lupus blog and her winning outlook on life and lupus.  You might even ask her a medical question or two.  I can attest that she answers her emails!

P.S. – Today is National Nurse’s Day and begins National Nurse’s Week

Looking at my office calendar hung on the left side of my desk, I suddenly realized that today is National Nurse’s Day! I couldn’t help but notice the striking coincidence of today’s nurse spotlight on Nurse Annie!  I wish I could say I planned this strategically, but I did not! So, instead, I am inserting this update to today’s post, to pause briefly and recognize the nurses around us.  Nurses play a critical role in the medical care we receive, and are often the first interface between us and the doctors who direct our care.  Hats off to the nurses who care for us!

A little background from the American Nurses Association about nurses… “Often described as an art and a science, nursing is a profession that embraces dedicated people with varied interests, strengths and passions because of the many opportunities the profession offers. As nurses, we work in emergency rooms, school based clinics, and homeless shelters, to name a few. We have many roles – from staff nurse to educator to nurse practitioner and nurse researcher – and serve all of them with passion for the profession and with a strong commitment to patient safety.”

“May 12, the final day of National Nurses Week, is the birthday of Florence Nightingale (1820-1910). The English nurse became known as the founder of professional nursing, especially due to her pioneering work during the Crimean War (1853-1856). Due to her habit of making rounds at night, Nightingale became known as ‘The Lady with the Lamp’.”

National Nurses Week was first observed in October 1954, the 100th anniversary of Nightingale’s mission to Crimea. May 6 was introduced as the date for the observance in 1982.”  Background information provided by http://nursingworld.org/.

Lupus Truth No. 6 – Diagnosis of Lupus Can Take Time

Diagnosis takes time

Diagnosis and Treatment: Many symptoms of lupus mimic those of other illnesses, and symptoms can come and go over time, which makes diagnosis more difficult. Because lupus can attack nearly any system of the body at any given time, lupus can seem to be a number of unconnected health problems within the same patient.

To learn more about this lupus fact, please see last year’s post on diagnosis and treatment timelines from  May 6, 2012.

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

Remember to change to your purple purse to get ready to “POP” — Put on Purple – for Lupus on Friday, May 17th!

Lupus Awareness Month 2012 Fact #1 – Unpredictable Lupus!

Put on purple!

This month is a very special month in the lupus community, and a great month to pull out all of your purple clothes, jewelry, shoes, handbags, scarfs, hair bands, socks, nail polish, eyeshadow, lipstick, gel pens and notebooks. It would be a great month to decorate a house , office, apartment or car with purple spring decor items!  I am even looking for purple candy for the candy dish on my desk at work.   I plan to share and wear my purple everywhere, everyday in May!

Band Together for Lupus Awareness

The whole month of May is Lupus Awareness Month, May 10th will be World Lupus Day, and May 18th will be the day to POP for lupus awareness. The Lupus Foundation of America (LFA) campaign to encourage everyone to POP, or Put On Purple, on May 18th will help promote lupus awareness.  The LFA is also encouraging everyone in the lupus community to “Band together for Lupus Awareness.”

Many community billboards, web sites and other displays all over our country will be showing their purple colors in displays such as special building and fountain lighting colors joining with the LFA’s POP efforts to publicize lupus.

Here, we will be sharing a different Lupus fact each day, and talking about many Lupus Awareness activities and opportunities all month-long.

LUPUS FACT OF THE DAY No. 1

Lupus is an unpredictable and complex autoimmune disease that causes inflammation and can damage any organ in the body with life-threatening consequences. Signs and symptoms of lupus attack on various body symptoms are important to find and seek treatment for while they are active. From time to time lupus can attack nearly any system of a patient’s body.

Unpredictable Lupus!

My rheumatologist has said “the only predictable thing about lupus is that it is unpredictable.”  Sometimes for weeks, months or even years on end, lupus is quiet and has seemingly little effect on my health.  Then, without warning, lupus can flare quickly and cause profound changes in my health and quality of life.  Medications may need to be adjusted, lifestyle and work schedules changed, responsibilities and commitments rethought to respond to moderate and severe lupus flares.

One night a lupus patient may go to bed feeling great, yet in their next waking moment the following morning, they may face a  severe morning flare of arthritis, CNS confusion and cognitive impairment and overwhelming fatigue and malaise.  The next morning, a patient may wake up feeling wonderful, and other days may be somewhere between the extremes.  A lupus patient and their doctor need to be ready to respond to the changing face of the disease, to manage lupus and reduce the disruptive and harmful impacts it can have on a patient’s life.

Unpredictable ...

The complexity of lupus makes it difficult to diagnose and difficult to treat.  It is sometimes difficult to distinguish from autoimmune and other illnesses that attack a single body system, and some of these such as multiple sclerosis have similar symptoms, but require very different treatment and medications than lupus.  Some of the powerful drugs that are used to treat lupus, such as cancer chemotherapy drugs, transplant anti-rejection medications and various forms of steroids have significant side effects and risks.  There is no one standard treatment for lupus, because there is no standard set of symptoms common to all lupus patients.  Each patient is unique, and from time to time each patient’s lupus changes and requires different treatment approaches.

Lupus Causes Inflammation

Lupus causes inflammation in connective tissue by attacking the cells and causing premature cell death, or apoptosis.   A healthy body normally has to dispose of a certain amount of cellular debris from the components of cells that die in the normal course of the body’s tissue renewal, as old cells die and new ones are created that replace them in our living tissues.  However, with lupus, the number of cells that are dying is much greater, and the amount of cellular debris is greatly increased, causing a strain on the body’s systems that must filter and dispose of the spare cell parts.  The extra materials can accumulate in the affected tissues, causing inflammation.  The body also has to work harder to try to repair the damaged tissues and this affects the function and condition of the organs and other tissue where lupus damage has occurred.

... Lupus

Lupus Can Damage Any Body Organ

Lupus can attack nearly any organ.  My lupus has attacked my lungs, liver, central nervous system, peripheral nervous system, digestive system/colon, joints, tendons, skin, mouth & nasal mucous membranes.  There is hardly a system that cannot be a target of lupus.  A lupus patient needs to be aware and alert to changes that might signal a new and different set of symptoms.  It is critical to keep medical appointments that include regular lab work.  Sometimes the blood and other tests give the first signs of changes in lupus and may signal a new area of lupus activity of impending flare, even before visible symptoms can be detected.

Lupus Organ Damage Can Be Life-Threatening

Unchecked, lupus attacking the kidneys, liver, brain, heart, intestinal tract or vascular system can become life-threatening when one of these vital organs fails.  Lupus in one of the major causes of kidney failure, and nearly 50% of all lupus patients have some form of kidney involvement.  I have personally known other patients who lost their lupus battle because of its unabated attack on one or more of these organs.

It’s Best to Identify Lupus Symptoms When They Are Active

Although we can tell our doctors about our lupus symptoms after they have cleared up, it is harder for a doctor to respond to a report of symptoms he has not observed.  Lab tests done during a time of lupus symptom flare are more likely to give results that indicate the causes and severity of the lupus activity.  This helps your physician to have better first hand knowledge of your lupus.  If  a patient is still in the “wait and see” period of their doctor trying to find out if they do have lupus, it is even more critical doctors see the symptoms for themselves.

What can you do to help spread the word about unpredictable Lupus?