Lupus nasal ulcers and a little annoying bump in the nose

Over the past few weeks, a running series of little nuisance lupus symptoms suddenly took an unexpected turn.  Lupus mouth and nasal ulcers are often the first sign of a brewing flare  These ulcers often last as long as the flare.

The ulcers usually go away quickly if I can take prompt enough flare-evading steps.  Once erupted, pesky oral and nasal lesions often last as long as a week to heal.  My nasal ulcers have their favorite “spots” they like to appear, and usually, if there is only one nasal ulcer, it is almost certain to show up just inside the upper surface of my left nostril.

Right now, there are a couple of mouth ulcers inside my lower lip, and an almost healed nasal ulcer it its same typically annoying spot.  This latest nasal ulcer lasted longer than expected.

All through my recent trip to see family out-of-state, it was there and remained sore, even after the trip was over and we returned home.  The stinging and burning usually associated with the nasal ulcer did not go away, either, and began to sting and become increasingly painful.

Eventually, a solid lump the size of a pea began forming, just underneath the skin where the nasal ulcer was healing, lodged firm and deep in the tissue between the upper nasal lining and the outside of the top of my nose.  Nothing shows from the outside, so it is only detectible by touching the tip of my nose, just off center a quarter-inch.

Over about three weeks, the lump continued growing, becoming firmer and increasingly painful and stinging.  It was time for the doctor!

Diagnosis?  Sebaceous cyst!

Treatment plan?  Antibiotics and “wait-and-see.”

Apparently, the nasal ulcer had damaged a pore opening in the lining of my nostril, and caused blockage and a resulting sebaceous cyst.  The doctor explained that this is not uncommon, and with a disruption like a lupus skin lesion, not entirely unexpected. The nasal ulcer disrupted  the pore’s normal function, and caused it to plug and begin acting awry.

The prescribed treatment is a two-month course of antibiotics.  If the cyst doesn’t resolve on its own, the next level of normal treatment might include injection with steroids, lancing to express the collected keratin, and/or simple surgical removal of the hardened lining through the lanced opening.  I learned from reading that this type of sebaceous cyst often will not resolve by draining alone.  The whole thing and the thickened pore wall should be extracted, too, after any infection and inflammation is gone.

It was a relief to get a benign diagnosis, but the lack of an immediate fix to the stinging lump in the end of my nose was disconcerting.  “Wait and see” is not easy for me!

So, for a little while I will live with one more invisible by-product of my lupus, a little stinging bump in the nose!

Closing Out Lupus Awareness Month & Lupus Fact No. 31

Closing Out Lupus Awareness Month

Today is the last day of Lupus Awareness Month 2013.  Thank you for visiting and for your interest in learning more about lupus awareness.  Also, kudos to those of you who are fellow lupus patients and lupus awareness advocates helping spread the word about lupus.  Raising lupus awareness saves lives and productivity.  Early diagnosis and treatment helps better control the severity and mortality of lupus.

The following excellent video about lupus was produced about six months ago by the Lupus Foundation of America, and plays below through an imbedded link to their You-Tube page has this introduction to the video.

HELP US SOLVE THE CRUEL MYSTERY

“Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack. Lupus is debilitating and destructive and can be fatal, yet research on lupus remains underfunded relative to its scope and devastation. Join the fight to end lupus.” 

(Music by longzijun)

You can help through a direct donation to LFA

One of the important ways you can help is to make direct online donations to the Lupus Foundation of America through Lupus Adventurer’s LFA-sponsored fund-raising page at lupus.donorpages.org.  LFA is a 501(c)(3) tax-exempt charitable organization, so your donations will be fully tax-deductible under federal and state tax codes.  You will receive a receipt for your donation directly from the Lupus Foundation of America.

http://lupus.donorpages.com/Raise4Lupus/LupusAdventurer/

Last Daily Lupus Fact No. 31

Prognosis and Hope – Life Expectancy: Today, people with lupus are leading healthier lives and living longer than at any time in history, thanks to researchers who continue to discover more about the underlying science of the immune system.

Life expectancy is now longer!

When I was first diagnosed with lupus many years ago, this was not the case, and the prognosis that people heard after diagnosis with Lupus was anything but encouraging.

Today life expectancy for lupus patient is much longer, and the information available about lupus life expectancy is more accurate and much more encouraging!

To learn more about this lupus fact, please read my full post on this subject from May 31, 2012.

Off-line and headed out-of-town to family adventures

Shortly, we will finish our morning coffee, pack our car and head out-of-town to visit our son, his wife and our four grandchildren in a neighboring state.  Today is our son’s birthday, so we will be with them this evening and to stay and visit for a few days.

grandsons

We also look forward to spending a little time with my older sister and brother-in-law who live just a mile away from our son.  We have a date early tomorrow with my sister and her husband for early morning coffee and a chat on their back porch.  He has experienced some extremely rough health challenges, and we hope to be a small encouragement to them.

granddaughters

Our short trip should be a welcome mini-vacation break from recent long hours of work projects.  We anticipate full hearts overflowing with blessings from being with our dear loved ones.

Don’t be surprised if a few photos and comments make their way here from my tablet PC during the trip.  Normal posting is likely to be suspended until after we return in the middle of next week.

Lupus Adventures at the Arizona, Walk to End Lupus Now 2013

Registration & Check in Area

Walk Day

Today, I am sitting here in the shade of a ramada at Chapparal Park in Scottsdale, Arizona enjoying some beautiful spring weather.  I am writing from the registration table at the Lupus Foundation of America (LFA) Walk to End Lupus Now in Scottsdale, Arizona and joining today’s festivities as a virtual walker.  The other (real) walkers took off on the 3.1 mile long course a little while ago.  Today’s walk is much too far a walking distance for my lupus arthritis and joints, and too much sun exposure for lupus sun sensitivity.  Alas, I am relegated to the ranks of sun dodgers sitting here in the cool shade of the registration table.

Key LFA Staff Joined Us

Attendance at today’s walk is impressive!  Key members of the LFA national office staff joined us to support and help with today’s walk arrangements.  Countless participants turned out, so we spent more than an hour checking in a massive crowd of  pre-registered and walk-in teams and individuals.  Including the over $39,000 dollars tracked online ahead of time, today’s fund-raising efforts should net many thousands of dollars to support the LFA.

Many sponsors supporting the walk

We had several sponsors today helping with costs of putting on the event, including co-sponsor, the City of Scottsdale that donated park access without charge for the event.

Walk T-shirts & Prizes

Also, we had support from AllSup disability representation company, Data Doctors computer services, GoDaddy.com, Blanco mexican restaurant, TinySolder.com screen printed clothing.  Additionally, health partner Arizona Arthritis & Rheumatology Research (AARR), the research arm of a large Arizona rheumatology practice, sent representatives to speak with today’s walkers about current and future lupus research studies.

Anne from Glendale, AZ

Today’s walk was a complete success!

As I sat around in my shady oasis, I met several interesting people today.  The first I want to highlight is Anne from Glendale, AZ.  Anne agreed to let me tell her story and told me a little about how her lupus problems have frustrated her over the years.  Her CNS Lupus was diagnosed in June, 1999 on a date she remembers vividly after many years seeking a correct diagnosis.  Before lupus interrupted her career, she worked in and around the Arizona legal community as a court reporter.  Eventually, her central nervous system lupus disrupted her job-related mental skills and triggered her medical retirement.  She began receiving Social Security Disability benefits, and these eventually converted to Social Security Insurance retirement benefits after she reached normal retirement age.  Anne was a joy to speak with and we shared a few enjoyable minutes in the shade chatting.

Liz and Friends after the Walk

Also camping out at a shaded picnic table after the race, Elizabeth and her group of close friends and family conversed about their lupus connections with me.

Liz was hospital nurse for many years, until she reached a point where she felt her CNS lupus might be posing a medical risk to her patients.  It was a wake up call when she realized she was using way too many post-it notes “all over her patient’s medical records” to keep track of their information and things she needed to do in their treatment.  She felt her CNS lupus might be a threat to the lives of her patients.

Eventually, Liz retired because of the  essential physical and mental functions her nursing career required.  She shared her amazing story of personal strength and persistence.  Nearby, the family and friends on her walk team demonstrated the genuine and encouraging support circle every lupus patient needs and hopes for.

Finishers Cross the Line

Also, in my shaded corner of today’s walk was Toni, today’s walk chair, as she stood briefly after the walk talking with ex-nurse Liz and David, the Arizona LFA representative.   Tony moved so quickly without stopping I never managed to snap a good picture of her!

Toni is an amazing woman with lupus who eventually retired from her army career.  While serving our country in Afghanistan, acute lupus kidney failure quickly sent her stateside and terminated her activity duty status.  Eventually, lupus led to her medical retirement.

The winning team raised thousands!

Toni’s team brought in today’s highest combined contributions totaling well over $4,000  from over 60 individual donations ranging from $5 to $500 dollars each. Her team’s efforts are an outstanding example of people joining small efforts together to make a great difference!  Her team of sponsors and walkers showed their overwhelming support of Toni and the Arizona 2013, Walk to End Lupus Now.

The day after the walk

The day after the walk…

Now it is “tomorrow” and Sunday afternoon, and I am finally finishing up my summary about yesterday’s walk.

My husband, advice giver and walk volunteer!

Today, I have stayed home from church to rest — in strict adherence to my husband’s wise and persuasive advice.  After yesterday’s walk, I rested all afternoon while my husband volunteered to do our weekly laundry for me.  Today, I feel as if I walked 30 miles yesterday, but all I did was watch a throng of people do all the walking!  I just sat in the shade chatting, taking a few pictures, processing walker registrations for a couple of hours and watching as real walkers completed their course.

Lupus is unpredictable!

Lupus is unpredictable and funny that way.  Sometimes, just having an eventful day is enough to bring on exhaustion and fatigue in its wake the next day.  Today, somebody (lupus!) pulled my plug and I am all out of steam to run my little engine.

Alas, today I am not even the “little engine that could.”  I thought I could, but I can’t!

Thank you, donors!

Last, but not least, I would like to extend a very special thank you to  my family, friends and co-workers who supported me and invested in the Arizona Walk to End Lupus Now, 2013.

More walk pictures…

Come to see the butterflies, and leave with lupus awareness

Come to see the butterflies…

A significant number of people who visit my blog find it through search engines like Google, Bing, and Yahoo.  Since this blog is primarily about lupus, one might think that everyone who finds it is looking for information about lupus.  While that is true for many visitors, a good number also follow links here because they are looking for images of butterflies (maybe because they like butterflies as much as I do!)

No matter why people might find this blog, I am glad that everyone can leave with greater lupus awareness.  This is a place where both butterflies and lupus awareness can be found in abundance.  If you want to know more about the connection between lupus and butterflies, check out my April 24, 2012 post, “Lupus and it’s mascot: butterfly or wolf?“.  This quickly took the “LAward” for the most highly read post on this blog, well into tens of thousands of reads!

And leave with…

So, if you are one of those who found me because you were seeking butterfly images, welcome!  I trust you will take a moment to learn a little more about lupus, perhaps by stopping for a few minutes to read a post or two.  You will find at least one butterfly picture in every blog post.

If you want to find out more about lupus, please read the “Lupus Medical Information” page of this blog.  It will take you to a page with basic information about lupus and links to more detailed authoritative information.  I suggest at very least visiting the Lupus Foundation of America at www.lupus.org.

If you just want to see the pretty butterflies and don’t feel like reading about lupus, no problem!  Please just click on the “Butterfly Collecting Adventures” button or browse through posts to see the butterflies on each, and enjoy.

My hope is that maybe you will do both — enjoy the butterflies and learn more about lupus!

If all you really want is a postage stamp summary of lupus, and no more, here are a few quick points:

• Lupus is a systemic connective tissue disease in the same family of auto-immune illnesses with rheumatoid arthritis affecting skin, organs and other tissues and body systems.
• Many lupus patients have skin rashes, arthritis, fatigue, mental clouding, mouth/nose ulcers, a butterfly shaped rash on their cheeks and are positive for antibodies against their own body cells such as ANA (antinuclear antibodies).
• Lupus can attack the kidneys, and is a leading cause of kidney failure.  50% of lupus patients have some level of kidney involvement.
• Lupus is difficult to diagnose, because it affects so many systems of the body, and can easily be confused with other diseases.
• Lupus affects each person differently, and can change suddenly and unpredictably in the same patient, going in and out of flares and remission.
• Although lupus is potentially fatal, if found early enough and treated properly Lupus can be well-controlled.
• Most patients can live a normal life span with little or no organ damage with standard treatments.
• Lupus is an important women’s health issue – it discriminates unfairly against women and minorities.  90% of lupus patients are women.
• Lupus is more prevalent in women of color: Hispanic, black, Asian, and American Indian women, with the highest mortality rate in elderly black women.

Lupus awareness…

Lupus awareness is very important, especially for those people who don’t yet know they have lupus.  For example, many people know enough about diabetes to recognize possible symptoms in another person, and would urge someone with diabetes symptoms to seek medical advice.  So, also, knowing enough about lupus to recognize its common signs and symptoms in a friend or family member could make a great difference, or possibly even save her life.

Lupus awareness is very important.  Although there is no cure yet, there are new and exciting medications, treatments and ongoing research that can help prevent lupus from destroying the health of those who have it.  Because one out of every 150 people has lupus, it is very likely that someone you know has lupus.

Thank you so much for stopping by, even if it was just to see the butterflies.  If you learned a little about lupus, even better!

Thank you for visiting
Lupus, the Adventure Between the Lines!

Benlysta infusion and forgetting something

stopped at the valet

Today was my last Benlysta infusion of the year, and I was the last infusion of the day at the hospital’s cancer infusion center.  As I arrived, I stopped at the valet parking station and headed right in.  In the waiting room the discovery of my Nook tablet battery on empty made me wonder what I would do for the next couple of hours.  Soon, I was distracted into a Christmas mood by noticing wreaths, a Christmas tree and other colorful holiday decorations bringing cheer to the infusion center suite.  The nurses welcomed me with offers of goodies and an invitation to sample the contents of a generous spread of treats.  The nursing staff and a couple of patients had all contributed to a bevy of sweets.

sampled a brownie

As I sampled a soft, gooey brownie filled with walnuts and chocolate chunks, I started craving some coffee, and made a note to myself for next year to bring something to share at my December infusion.  While the staff prepared my IV infusion set up, I dropped my purse and jacket at the infusion chair closest to the coffee station and brewed a single serving of some surprising great coffee, complete with my favorite hazelnut creamer.

vein on top of my hand

Although I have easy to find veins, the nurse had trouble run getting past a valve in the vein on the top of my hand, just as we both remembered she had the same problem in the same spot once before.  She explained that some patients are what she called “valvy” explaining some people have more valves than normal.  The unusually uncomfortable feeling of pressure in the vein had me communicating my discomfort with conviction, as the nurse commented the IV had just blown out.  Pulling the it out, she and I both agreed she would have to toss it and try another IV in a new vein.

got the infusion going

Soon, she got the IV successfully in place and started the Benlysta flowing.  I settled in to read a novel I had borrowed from the book cart on the way in, not sure it was going to be one I would want to read through to its end, but its early pages sufficed to keep me amused, sans my uncharged techie toys. The short one-hour infusion time passed quickly.  Most infusion days, I arrive at around 3:00 p.m. and am usually walking out by 5:30 p.m. or so. Today was no different, except for stopping briefly to exchange Christmas wishes with the nurses and saying goodbye until “next year.”

cash for a tip

The infusion center validates valet parking for patients at the hospital, but I realized as I left the building that I did not have any cash for a tip.  I left my keys with the valet, and let him know I would be right back.  I headed for the main hospital building to find a teller machine.  Just inside, I found one, pulled out some cash and went to break a twenty at the gift shop.  I found a cute battery-powered necklace made of miniature Christmas lights, thinking it would be fun to wear to work next week, and calculated the cost just was enough to break a twenty with plenty of change left for the tip.

Once back in my car, I headed out toward the street, suddenly realizing I had forgotten the file folder I brought with me, expecting a call from my financial adviser.  I remembered I had left it on top of the teller machine!  In a panic, turned my car around at the light and rushed back to the valet station.  Handing my keys back to the valet, I hurriedly explained I had left some very important papers and had to go get them.  I literally ran back through the hospital entrance, glad I was wearing sneakers, and uttered an audible thank you prayer as I spotted my pink file folder atop the teller machine.

Catastrophic in the wrong hands

Inside the file was a receipt, super bill and lab orders from my rheumatologist and my medication list, but more importantly, it also contained my father’s bank statements and the durable power of attorney for handling his business affairs.  This week, I have worked with the bank to restructure some of his maturing investments.  The file contained all dad’s bank account numbers, statements, account balances, addresses, etc.  This information, together with the details in the power of attorney documents, could be catastrophic in the wrong hands, potentially providing everything someone would need to commit bank account takeover fraud.

Slowing down abruptly to stop the pace of my pounding heart, I retrieved the file with a deep sigh, took a couple more intentionally deep breaths, and whispered another short  prayer of thanks.  Instinctively, I clutched the file tightly to my chest as I slowly walked back outside.  Thanking the valet once again, I was back in the driver’s seat and finally truly headed home.

lupus and short-term memory deficit

As I pulled away, I noticed my heart was still pounding and grumbled to myself.  I was extremely frustrated that lupus and my short-term memory problems from CNS lupus caused me to forget something so important!  I was also angry at myself for being careless with the file.  At the same time, I was extremely thankful I remembered it in time to prevent financial disaster.

My favorite expression from the famous Charles Schultz cartoon character, Snoopy the dog, was on my lips as I drove toward the freeway, voicing a deep guttural “aarrgh!”

 

Lupus rants, ridiculous recommendations, and real reasons to exercise

No miracle secret lupus cures!

I recently read a spirited rant from another lupus blogger about all the mindless things people say and suggest to lupus patients, such as suggesting that enough exercise will “cure” lupus. There is no secret cure for lupus! Yet, many well-meaning people persist in propagating myths about supposed miracle cures.  While some patients do go into full and lasting remission, they still have lupus, able to flare and become active again, without notice or clear cause.

Lupus still remains unpredictable and incurable.  Perhaps some day that will change, but for now, that is still the truth about lupus.

News Headlines

If a real lupus cure were suddenly discovered, it would be sensational news!

We would read about it on the front cover of Lupus Now, Arthritis Today, JAMA, Newsweek, U.S. News & World Report, CNN and Fox News, and the good news about it would go viral on the Internet.

The leading rheumatologists and research doctors would be interviewed on national television news and as guests on major television and radio talk shows.

The doctor who finds a cure…

The doctor who finds a cure for lupus will become a household name and might even win the Nobel Peace Prize in Medicine.

A real lupus cure would not stay a secret for long!

Reading the other blogger’s rant made me think about exercise, and some of the reasons I do it.  Although a moderate amount of careful exercise benefits lupus patients, it certainly is no cure! However, the right kind and amount can help a lupus patient be a healthier and stronger, and that is a great thing.  I feel better when I exercise, like anyone else with lupus or without it would.  Exercise is always an important part of a healthy lifestyle for any person, including lupus patients.

Exercise is of some profit

A lupus patient needs to be careful not to overdo exercise beyond the level safe for the current state of their medical condition.  Sore, painful joints and inflammation are red flags to take it easy, or to postpone exercise if  symptoms are flaring too much.  Then, when the lupus flare subsides, the exercise can resume or go back to normal levels.

It seems harder to accept a suggestion to exercise from someone who doesn’t have lupus or a similar auto-immune illness. It is easier to accept the recommendation if the advice come from another lupus patient who actually exercises.   Another patient can tell me how exercise it helps them.  Another lupus patient can understand why it is so hard for me to want to think about exercising if every joint hurts.  They also know why when the thought of moving seems like it will take herculean effort, how lupus joint pain and fatigue are counter-intuitive to the idea of movement and exercise.  It is so hard to imagine when it hurts to move, that getting up and moving more will make it hurt less.

Doctors give me reliable treatment advice

The suggestion to exercise is much harder to accept from someone else (other than my rheumatologist) who thinks they know exactly what will improve my lupus, or worse yet,  who thinks their suggestion to exercise, (take a supplement, wear some special metal jewelry, or some other thing) will actually cure my lupus.

I don’t necessarily want to hear these people’s ideas of what they think I just “need to do to get well.”  I want all my serious treatment advisers to have medical degrees!

However, there are some very important reasons why I exercise two to three times each week:

• My rheumatologist recommends it, and I respect his advice
• It will help me fight osteoporosis caused by steroids
• It strengthens my muscles and improves my circulation and tendon health
• It helps reduce my risk of heart problems that are higher in lupus patients
• It increases my oxygen exchange, strengthens my lungs and helps my asthma
• It is good for my digestion
• It strengthens my spine and reduces the frequency of chiropractor visits for three herniated cervical disks
• It also helps morning lupus brain fog clear up more quickly as increased circulation stirs up my body’s metabolism.
• It raises endorphin levels that naturally elevate my emotions/mood and reduces my perception of pain.
• It helps me fight weight gain from an increased appetite from steroids.

Exercise WILL improve how I feel!

I get my most of my exercise on an indoor cycle with a fluid trainer, and when I have access to an indoor pool, I have really enjoyed swimming.  I also do some gentle yoga exercises to improve my spine and joint health.

Even though there are plenty of people out there with some crazy ideas about how to magically cure lupus, there are some real things we can do to improve our lupus outcomes.

Exercise is something we can definitely do that may improve how we feel, at least a little.

Lupus and the best of the red, white and blue!

Today, we celebrate freedom!

Today, in the United States of America we are celebrating a national holiday, the anniversary of the declaration of our independence as a nation.  Our exceptional country, founded as a nation that protects personal freedom and liberty for all citizens.  I am, without excuse or apology, both a lupus patient and a patriot!  As a lupus patient, I also celebrate and thank God for many things in our country that impact lupus patients positively.

Many things together have helped make our country the most favorable place in the world to live as a lupus patient, and these all contribute greatly to the health and quality of treatment of people with chronic illnesses, such as lupus:

Best of the red, white and blue!

• Available medical care from the best system of well-trained doctors in the world
• Liberty to choose which doctor I will visit and choice to see any doctor on my health insurance plan, or to pay extra if I can afford it to see another doctor or specialist of my choosing
• Protection from discrimination due to illness or disability, protection for my medical privacy, and protection of my job when lupus interrupts my ability to work through laws like the Family Medical Leave Act, the Americans with Disabilities Act and the Health Care Insurance Information and Portability Act
• Drug companies that offer programs to pay the co-pays and drug costs for patients that need help
• Bankruptcy laws that protect me from financial slavery in the event I cannot pay unexpectedly huge medical or other bills
• Social Security and Medical Care funded by other taxpayers for persons who are unable to work because of disability
• Open access to public libraries and internet medical information sites provided free of charge
• Attorneys in our legal system that aid patients with navigating the disability application process, and are paid only if and when they help secure a patient’s benefits
• Lawyer’s professional ethics requirements that they donate a certain percentage of their work to people who cannot pay for their services, such as underemployed or unemployed lupus patients or others with limited resources
• Special parking laws, placards and plates that give close access to buildings for disabled persons and require wheelchair access everywhere
• Communities all over our country that fund no-cost or reduced-cost transportation for disabled citizens
• Major retail corporations and pharmacies that willingly offer lists of hundreds of common medications at low ($4 to $5) costs
• Tax exempt status for non-profit organizations such as The Lupus Foundation of America, and its many local chapters that support lupus patients, lupus research and support services and for lupus patients, by encouraging benevolent tax-free giving by citizens and corporations
• Federal and state tax laws that give deductions for high medical treatment and transportation costs

Celebrating our precious freedom to vote,
and to exercise our will as a people!

And lastly, I celebrate the wisdom of the voters in all of our great states, who watch the ongoing decisions of their elected representatives.

We cast our ballots in local and national elections and exercise our liberty to check any failure to represent our wishes.

We have the recurring ability as voters to correct any dangerous or uneven balances of power that could harm our freedom or well-being as citizens of this great nation.

God bless the adventure of freedom in our great nation!

God Bless America!

Lupus, a lovely chat and a legal luncheon

Meeting someone new with lupus

Yesterday, I met someone new that has lupus.  I had a wonderful chat with her and her son, and thoroughly enjoyed our visit as we sat outside for an hour, enjoying the end of a summer morning at a Starbucks in downtown Phoenix.  I learn something every time I meet another lupus patient, and yesterday was no exception!  The strength and endurance of this lovely woman impressed me deeply, as she shared about the many challenges and changes that lupus has brought into her life over the past five years.  Her son joined in our conversation, and seemed very understanding and supportive.

Amazingly unruffled with multiple autoimmune diseases

It was amazing to me how unruffled she seemed about facing multiple auto-immune diseases, each singly enough to disable her.  With Lupus at the center of her health battles, like so many other women with lupus, she has been unable to work.  Lupus flares and repeated hospitalizations have interrupted her attendance on the job.  My personal health challenges with lupus just seem to pale in comparison!  As I drove to an afternoon employment law seminar, I reflected on my conversation with the truly amazing woman I had just met.

Legal updates on FMLA and ADA

Unfortunately, the too many lupus patients find themselves in a similar situation: unemployed due to their health.  Despite the protections of the Family Medical Leave Act (FMLA) and the Americans with Disabilities Act (ADA) the statistics are not very good for many lupus patients who lose their jobs.  Later, as I sat through lunch and listened to a lawyer speak about recent legal updates to FMLA and ADA, my mind wandered back to the woman at Starbucks, and the others I know like her who became unemployed when lupus got in the way.

Reminded again to be grateful!

I am reminded once again to be extremely grateful and thankful for my job.  I have been able to stay in my career, and have immense amounts of encouragement from others.  The attorneys and support staff I work with, and my husband, family and closest friends all seem to stand by cheering me on.  Without them, my story could have come out very differently.  I just wish every lupus patient could have the blessing of an accommodating employer, and the encouragement to face the changing faces and impacts of lupus.

Upcoming LFA Learn from the Experts Webinars

Free Lupus Webinars

Lupus Foundation of America

The Lupus Foundation of America (LFA) presents an online wonderful educational webinar series, “Lupus: Learn from the Experts,” about many lupus-related topics. The webinars provide important information about living with lupus from the world’s leading lupus experts.  The webinars are viewed using a personal computer with an Internet connection.  The next four webinars are must-attend events on my calendar.

Past Webinar Topics

Recent webinar topics include Nutrition, Diet and Exercise with Joe Raphael, DrPHc in February 2012, Pregnancy and Fertility with Eliza Chakravarty, M.D., M.S. in April 2012 and Coping and Living with Skin Lupus with Victoria Werth, M.D. just last week on June 7th.  These past three webinars recordings may be viewed at the LFA website.

https://www.eventbrite.com/login

Free sign up

Registration is free through an online seminar hosting service, Eventbrite.  Please note that sometimes the free event date online tickets “sell out” early when the maximum amount of registrations are received, so I recommend signing up right away for any of the webinars you are sure you want to attend.  In the past, when an event was already “sold out,” I went onto a waiting list and received an email shortly before the event telling me I could attend.  If you miss an event, you can also view it at the LFA web site, usually within a few days after the webinar.

Clicking on one of the links below will take you to the registration page.  You can create an account at Eventbrite so you can save your contact information and sign up more quickly for other events.  You can also see information about past and future events to attend.  While registering for an LFA event at the Eventbrite site, you can also send the event directly to an Outlook calendar on your computer.  You will receive an email confirming your registration, with a link to use on the day of the webinar.

Lupus: Learn from the Experts Webinars

Upcoming 2012 One-Hour Webinars

Social Security and Disability 7-12 2PM

Parents Caring for Children with Lupus 9-11 2PM

Lupus Treatments 9-20 2PM

Coping and Living with Fatigue 11-1 2PM

visit http://www.lupus.org/learn

If you have never attended a live webinar event, don’t be intimidated!

If you can get through the registration process, you should be fine when it comes to signing in to watch on the day of the webinar.  Just make sure you save the calendar entry and the email with the link so you know how to get to the webinar on the day of the event.

For more information on this series, to view recordings of past webinars or see future webinar topics, please visit www.lupus.org/learn.

Lupus Adventurer and a 2 year Bloggiversary

Two Year Bloggiversary

Today marks two years since the start of this blog, launched the middle of the night on a hot June evening in 2010.  That night, my joint pain woke me, and I decided to get up and do something else besides feel miserable all night.  I clearly needed a distraction, and was curious to check out the possibility of creating a blog that I had heard so much about.

So, this blog was born out of mid-night oil and an interest in hoping to make a small difference, especially to those lupus patients and their families facing many questions and concerns.  I felt that if my decades of adventure with lupus could help others, then it might give being a lupus patient just a little more meaning.   I wanted to help increase lupus awareness, and I hoped that I might be able to effectively share how much my faith in Christ has helped me, and that I might as a result point a few others toward Him.

It took awhile to find my voice

My first posts were pretty basic, and merely introduced this adventure, headed down an uncharted road.  My first post was a  simple Welcome, and I realized as I stared at several blank WordPress draft screens, that it would take me awhile to “find my voice” as a blog writer.

The overall results have been a great blessing thus far.  This blog has provided a wonderful opportunity to meet many people who are walking this lupus adventure with me.  So many have encouraged me with their comments and contributions to the discussion of lupus.  If any one conclusion can be made about lupus and blogging, it is that we are not, and need not be alone with our lupus.

Thank you!

The modern-day miracle of the Internet virtually shrinks continents and time zones and has allowed over 17,000 readers from over 100 countries to join in this adventure.  It didn’t seem possible that a blog could connect to so many people all over the world.  I am honored and humbled by readers kind comments and compliments.

Thank you so much to those of you who have visited and followed Lupus, the Adventure Between the Lines over the past two years of my lupus blogging.

Each of you have greatly encouraged me and become special friends in this lupus adventure.

Sincerely,

Lupus Adventurer