One Patient's Positive Perspectives

Posts tagged ‘ADA’

Lupus and being healthy, wealthy and wise? Part 2

Lupus and Work, Wealth and Wisdom

going to work

False guilt about ADA work schedule accommodations?

Benjamin Franklin’s well-known words include the idea that early to bed, and early to rise can make us healthy, wealthy and wise.  He may have over-stated the value of sleep a bit when it comes to achieving results such as wealth and wisdom.  Perhaps with lupus such expectations are exceedingly high and lofty.  Most days, I awake thanking God for the ability to just get up, and go to work — at all!

Even so, I battle recurring temptations to have false guilt about the generous ADA  accommodation I receive permitting my flexible work schedule. I know in the front of my rational thought I shouldn’t feel guilty, but I still do.  The battle is mostly subconscious, but continues to bubble up into the front of my thoughts unexpectedly.  My ambiguous feelings of conflicting gratefulness and guilt simply recur, despite my efforts to reconcile them.

Many of my thoughts about lupus, and the complex and interrelated ways it affects my life are probably subconscious.  Each time I contemplate lupus, working and the demands of my schedule and life responsibilities, these wisps of thought are there too.  For a few hours after waking and sipping that first cup of morning coffee in bed, sometimes a quiet multi-level conversation arises in my mind.

This silent chatter accompanies me through my mornings, as I plod along through a daily ritual of summoning body, reflexes and cognitive thought back into a reasonably functional state.  Often the flow of subconscious thoughts about lupus – its blessings and battles – gurgle up through my focused, conscious thoughts to become part of my audible conversations, poetry and prayers.

Perhaps, other patients talk to themselves, too, with thoughts similar to a few of my own ramblings…

A few indulgences, with moderation!

Got to get ready for work!

Conscious: I’ve got to get ready for work.

Subconscious:  More coffee!  My mind is really foggy this morning. Don’t forget to take medications. Get them now, don’t procrastinate!  I’d better stay home until my brain clears up some more!  What if it won’t clear up soon enough?  I’ll be really late again!  Maybe I will have to miss the whole day this time.  Is it too soon to drive safely?  Toughen up, girl, just get going!  Remember, early to bed and early to rise!  Yeah, right!

How do other people get going so early? What would it feel like to wake up clear-headed?  It hurts to think through this murky brain of mine.  Pull it together! I’ve got to find some clothes to lay out before my shower.  I hate being late!  It would feel good to be early today and surprise everyone.  Quit that wishful thinking, girl, and get to exercising!  Focus now, come on, I’ve got to get going.  I don’t want to be late today!  Lord, please help me be on time today!

Conscious:  I am so grateful for my ADA accommodation letting me start work at mid-morning.
Grateful for the ADA

Grateful for the ADA

Subconscious:  What would I do without this schedule?  I know, ADA’s the law.  They are supposed to accommodate me.  But they do it willingly.  I am so glad!  If it wasn’t the law, would my employer want to give me this schedule accommodation?  Maybe not!  Maybe so!  What would I do if I had a different job?  Would any other bosses really work with me around my lupus?  I’m not so sure they would.  Would they give me a hard time?  I would hope not.

What if I changed jobs, would the new employer give me the same accommodation?  What if I had to try going to work as early as “normal” people do?  Could I hide my brain fog?  What if they wanted me to go to morning meetings and talk intelligently?  Quit worrying about “what ifs”!  I have to trust the Lord he has given me this job.

I wonder if anyone knows that Monday morning status meetings were a big reason I left my last job?  I never want to be forced to interact with “morning people” under stress like that again!  Did they really expect people to remember all those details on Monday mornings?  Those morning case status meetings were painful!

Could I drive to work safely every day if I had to leave early?  No way, that would be dangerous!  Would I be liable if I caused an accident because of brain fog?  Isn’t brain fog considered impairment?  Brain fog wouldn’t be a good excuse for causing an accident.  Could I do it if I had to?  Maybe!  Every day? Probably not!  That would be extremely difficult!

I can do whatever God calls me to do!  Lord, help me focus on today, and not worry about tomorrow.

Conscious:  I feel uncomfortable walking in so late every morning, compared to everyone else.
Lupus, and driving on through the fog of impairment

commuting later

Subconscious:  What do people think about why I arrive at work later than they do?  I wish I could think clearer in the mornings!  Do they think I am just lazy?  I hope not.  It must feel like I am getting special treatment.  I hope no one resents it!  I wonder if my co-workers understand how rough mornings are for me because of lupus?  Maybe they think I am slacking off and just want to sleep in.  Does my boss get grief about my schedule? I hope not.  Do co-workers or my subordinates complain?  I’m sure some of them do.

I know the ADA says to accommodate my lupus. I hope they aren’t getting tired of it.  Am I really worth the bother to them? I hope so!  Is it a pain for my assistant to set meetings around my special schedule? It must be hard to work around my mornings. Does my schedule erode my coworkers’ respect for me?  What does my assistant really think about it?  It must take great patience sometimes.  I need to make sure I show how grateful I am.

Am I feeling a little guilty?  Yeah, probably.  Wait, why am I feeling guilty?  Cut out the false guilt, and stand up straight!  Where is my poise and confidence?  Thank God for His goodness regarding this job!  I know I take a “hit” for not being here early.  It is hard to supervise people when I am not here yet.  Put on your brave face.  Walk in with confidence.  Don’t let them see your fear.  I have to exercise faith.  Lord, help me trust you. I don’t want to fail because of my limitations.  Lord, help me handle my responsibilities well today!

Cc

morning exercise and prayer

Most mornings, I strive to prepare physically and spiritually before venturing out.  The persistent mental chatter is quieted by gentle exercise and a few minutes of quiet, perspective-setting bible reading and prayer.  This helps turn my focus upward, outward, forward and optimistic.  Coping with lupus for me means getting my thoughts disciplined to look at others, and to get my mind off myself.  This helps me shift my attention from how I feel physically, to give attention to the needs and responsibilities I have toward others.

A thoughtful beginning to my day helps me cope better with my daily challenges, and perhaps helps me gain a drop more wisdom to apply to the adventures ahead.

Daily mercy, grace & wisdom

While early to bed and early to rise may make me healthier, I believe God is the One who graciously helps me be equipped to work, make a living and lets me borrow his wisdom along the way.  Unlike Mr. Franklin, I am simply not convinced that good sleep habits alone will give me that!

Daily, my need for God’s mercy, grace, wisdom, help and strength loom great.  His ample supply flows abundantly to my aid.

Biblical perspectives I like to ponder

biblical perspectives

Biblical perspectives

Nehemiah 8:10 “For this day is holy unto our Lord: neither be ye sorry; for the joy of the Lord is your strength.”

Psalm 118:24 “This is the day which the Lord hath made; we will rejoice and be glad in it.”

Proverbs 24:33-34  “Yet a little sleep, a little slumber, a little folding of the hands to sleep: So shall thy poverty come as one that travelleth; and thy want as an armed man.”

2 Timothy 1:7 “For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.”

James 1:5  “If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him.”

Lupus, sick days and alphabet soup

White sandy beaches in my dreams

I consider myself very blessed as I approach what will likely be my last few years of a long career working in government law.  My public employer has a generous benefit leave program that rewards long time employees with more annual vacation than new hires. While it might sound appealing to use mine for month-long vacations in the Bahamas, swimming and sunbathing on white sandy beaches, I don’t.  Too much sun and ultraviolet exposure would surely send me into a whopping lupus flare!  Like most Lupus patients, I need to use my leave time for more than recreation.

The alphabet soup of sick leave

Alphabet soup of sick leave

My total annual leave time is a generous 49 days, including vacation days, personal days, and sick days, plus legal holidays.  Usually, about half my vacation days are spent as originally intended on recreation, but the rest has to bolster my sick leave account when it gets overdrawn.  A critical part of requesting an effective ?Americans with Disabilities Act (ADA) covered accommodation for Lupus or another similar chronic health problem is obtaining approval to use vacation leave instead of sick leave when the sick leave is exhausted.  Additionally, the ADA and the Family Medical Leave Act (FMLA) together give employees with disabilities or other serious health conditions many important protections from negative employment actions due to covered absences from the workplace.

I am thankful that my employer’s disability-friendly leave policy permits Fair Labor Standard Act (FLSA) exempt salaried employees to use leave in half-day increments, in comparison to FLSA covered employees who are paid hourly wages and use leave in hourly or lesser increments.  Most traditional workplace leave policies require salaried personal to use leave time in whole day increments.  This policy is helpful for employees with chronic health challenges, especially when they only need partial days off work to for doctor appointments or on days when their illness forces them to work a partial day.

What’s causing the need for extra sick leave?

I use up most of my sick leave in half-day increments due to the nature of my Lupus.  All auto-immune diseases tend to have more severe symptoms in the early hours of the day.  This is partly due to how auto-immunity works and the body’s metabolic activities during sleep.

Apoptosis Programmed Cell Death

Every person undergoes an ongoing process of old cells in their body dying and new cells being formed to replace them.  In a healthy person, their cells live out their normal life span.  For example, some cells in the blood live only a few hours, digestive system cells live a few days, skin cells live a few weeks, red blood cells live several months and brain cells live all the years of a person’s life.

In the case of Lupus, damage to a patient’s body cells is aggressive as it over-actively attacks connective tissue cells, destroying them at an above normal rate while the patient sleeps.  The aftermath of this faster than normal cellular death (apoptosis) clogs up the body’s tissues, systems and organs with cellular debris (the biological building blocks of the destroyed cells.)  It takes a body time to unclog the brain, organs, fluids and tissues.

The result in the meantime is inflammation and impaired function of involved body parts.  For me, that means joint swelling, pain and stiffness, mild to significant cognitive impairment and overall malaise, ache and discomfort.

Much of my sick time off work due to lupus is usually because of days when I wake up feeling somewhere in the range of  “just plain yucky”, “really rocky” to “completely indisposed.”  (One of my doctors with a great sense of humor likes to kid me when I use the word “yucky” that it is such a highly specialized “medical” word!)

Symptoms are most active in the morning

Lupus symptoms are almost always more active in the morning hours, but tend to quiet down more with each hour that passes. On especially bad mornings, I try to only take a half-day off sick in the morning, and try go to work for at least the afternoons when possible.

With my lupus symptoms, even in times of severest flare, often only the morning is unbearable, and by afternoon my symptoms let up.  On bad days when I finally feel tolerable by noon, I can recover at least part of my work day.   My bosses like the fact that I still show up most bad days, and can deal with the business that most needs attention, especially during periods when I am having increased lupus problems for days or weeks at a time.  Sometimes, I also am able to telecommute on afternoons when my morning lupus symptoms are more severe or take longer to let up.

Other uses of sick leave because of lupus

Other uses of sick leave

A healthy (no pun intended) part of my sick leave and vacation time is spent going to and from various medical appointments.  On many half sick days I visit a host of doctors, labs, radiology offices and the hospital cancer treatment center where I receive my monthly Benlysta infusions.

I spend many days each year in my family practice doctor’s office, as well as visiting my rheumatologist, chiropractor, dentist, gastroenterologist, dermatologist, podiatrist, and orthopedist. If my neuropathy keeps progressing, I may have to add a neurologist to the group.  Thankfully, I am NOT one of the 50% of lupus patients who have kidney involvement, so there is no nephrologist on my list!

I also use a few days off each year to rest up after major life events or after vacation or business travel, to try to prevent flares of my lupus.  I try to plan these rest days strategically to allow that extra “recovery day” to sleep in, take naps and get rest and repair time before returning to my regular work duties and schedule.  Also, I telecommute one day each week and have the opportunity to work from home once in a while on other days during times I am in flare or am housebound on “indisposed” days.  This has proven to help bolster my overall health and resistance and proactively help prevent fatigue and lupus problems.

Asserting rights under available job protection laws

Asserting ADA and FMLA protections

It is extremely important for any lupus patient in the U.S. with career threatening symptoms to assert their legal right to the protections available under the ADA and FMLA.  Proactive communication at work and with the doctor, and an interactive dialog may help the employee and employer agree on a reasonable accommodation for the employee’s disability under ADA.  With proper notice, the FMLA can protect against job loss due to extended or intermittent absence due to a serious health condition.

When I was first diagnosed with lupus in the early 1990s, not long after the passage of the ADA, one of my closest professional peers strongly admonished me to keep my diagnosis a secret at work.  She sternly warned me that she feared my job would be in jeopardy if my employer ever learned I had lupus.  I am glad to say I did not follow my dear friend’s advice.  I went ahead and told my bosses about my lupus diagnosis, and they have supported me with kindness and great understanding.  In turn, I have been a very loyal and productive employee.

🙂

I am glad to say that after 22 years in the same job I held when I was diagnosed with lupus, my employer has followed the spirit and the letter of the ADA and FMLA laws.  This is one of the things I regularly thank my employer and God for, realizing that not everyone’s lupus and career have this type of positive outcome.  I am grateful, but mindful of the many with lupus and other chronic illnesses who unfortunately, don’t have the same story to tell.

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.

Prognosis and Hope: Lupus Fact #30 – Working with lupus and ADA accomodations

Prognosis and Hope: Most people with lupus are able to continue to work. However, some may need changes to their work environment and schedules, such as flexible work hours, job-sharing, and telecommuting.  My lupus has affected my professional life, and required some major accommodations the help me to work under the Americans with Disabilities Act (ADA.)

I won’t kid you, it takes work!

A good ADA accommodation takes some work!

I won’t try to kid you or say that working out a successful ADA accommodation is easy, but agreeing on one that works for you and your employer can mean being able to keep working with your lupus and keeping your career or job.  I can be tough enough to figure out that you may even need to ask an advocate or attorney to help you, especially if you are struggling with CNS involvement like I was when I formally first requested ADA accommodation.

The ADA prohibits disability discrimination

What is the ADA?

The ADA is a federal law first passed by congress in 1990, that prohibits discrimination against people with disabilities such as lupus in employment, transportation, public accommodation, communications, and governmental activities.  Unfortunately, every lupus patient does not have the same success finding an employment situation with accommodations right for their lupus.

Lupus awareness is critical for employers understanding their workplace responsibilities under the ADA and their employees’ rights for reasonable ADA accommodation.  The employee has to ask for and suggest a reasonable accommodation, usually in writing.  Under the ADA, several criteria about the employee and their disability must first be met.  The  ADA requirements were recently updated by congress in 2008 so they are now even more favorable to employees, and the Equal Employment Opportunity Commission (EEOC) passed a series of regulations in 2009 and 2011 to carry out job related parts of the Americans With Disabilities Act Amendments Act.

Requesting ADA Accommodation at Work

Sample ADA Accommodation Request Form

My employer gave me a form to fill out to request an ADA accommodation that I used to start the process.  On the form I told how my lupus met the legal requirements that made me covered by the ADA, and then I suggested some reasonable  accommodations that would help me keep my job and be able to do my work.  I attached a detailed brochure “What is Lupus” from the Lupus Foundation of America and a narrative letter from my rheumatologist that explained my limitations and supported the accommodations I requested.  I also included some printed information about Lupus from the U.S. Department of Labor Job Accommodation Network web site that I will talk more about below.

Employer and employee talk to agree upon reasonable accommodation

Finally, conversation between the employer and employee helps them reach agreement about reasonable accommodations.  My supervisors and I agreed to change my work schedule to allow me to arrive later in the morning and leave later in the evening to accommodate my lupus symptoms that are most disabling in the early morning hours, and for me to work when I am the sharpest mentally.  Also, we agreed that on days my lupus was in severe flare, I could telecommute and work from home when permitted by my work responsibilities.

ADA Accommodation in a Successful Career

I have been successful keeping my thirty year career in law, first as a paralegal and then as a government law department administrator for the past 22 years.  Because of continuing to work, I am not a burden on the social security system, and am able to get and pay for my own medical care through my group insurance program.  I am now qualified for a local government pension and will be able to work the rest of a full career to my normal retirement age, because of the support of my bosses and their implementation of the ADA accommodations I needed.

The ADA accommodation clearly helps me, but it also protects my supervisors from being accused of being unfair to other employees by making special scheduling or telecommuting arrangements for me.  Others at work cannot really say they are being unfair, or inequitable, since the idea of workplace equity does not apply the same to employees covered by the ADA, who are not similarly situated to other healthy employees.  My ADA accommodation formally places me into a protected status given by the ADA, that acknowledges I am working under a different situation than most others in my office.

The Technical Assistance Manual: Title I of the ADA provides this important information:

Who is protected by the ADA?

Who Is Protected by Title I of the ADA?

“The ADA prohibits employment discrimination against ‘qualified individuals with disabilities.’ A qualified individual with a disability is:  An individual with a disability who meets the skill, experience, education, and other job-related requirements of a position held or desired, and who, with or without reasonable accommodation, can perform the essential functions of a job.

To understand who is and who is not protected by the ADA, it is first necessary to understand the Act’s definition of an “individual with a disability” and then determine if the individual meets the Act’s definition of a “qualified individual with a disability.”

Meeting the ADA Requirements

The Definition of a Disability

The ADA definition of person with a disability is very specific, and changed by Congress in 2009. A person with a “disability” is an individual who:

  • has a physical or mental impairment that substantially limits one or more of his/her major life activities;
  • has a record of such an impairment; or
  • is regarded as having such an impairment.

Help and Free JAN Consultation

This site is a wealth of information!

The Job Accommodation Network (JAN) is a free consulting service that provides information about job accommodations, the Americans with Disabilities Act (ADA), and ability of people with disabilities to get and keep their jobs.

Job Accommodation Network – West Virginia University
PO Box 6080 Morgantown, WV 26506-6080 — Toll Free: (800)526-7234 — TTY: (877)781-9403 — Fax: (304)293-5407 — jan@askjan.org http://AskJAN.org

Finding suggestions for reasonable lupus accommodations

Links to Suggested Reasonable Accommodations for Lupus

JAN  has these great resources for learning more about reasonable accommodations for lupus (check out all the live links below):

  1. Accommodation and Compliance Series: Employees with Lupus, By Linda Carter Batiste, J.D.
  2. Searchable Online Accommodation Resource(SOAR) – Step 2: Select a lupus limitation to follow one of these links to more information:
    1. Individual has difficulty with activities of daily living.
    2. Individual has cognitive limitations.
    3. Individual is sensitive to extreme temperatures (including Raynaud’s Phenomenon).
    4. Individual has gross motor limitations.
    5. Individual experiences fatigue and weakness.
    6. Individual experiences migraine headaches.
    7. Individual has photo-sensitivity.
    8. Individual has a vision impairment.
  3. Effective Accommodation Practices Series: Lupus – Job Accommodations for People with Lupus – a downloadable MS Word format document.
  4. Lupus Organizations
  5. Accommodation Ideas By Occupation or Industry
  6. Information by Product or Service

There is a lot to read at the ADA website, but it is worth the trouble to learn about what you can do to claim your rights under the law.

If you are unsure where to start, JAN offers help and consultation  for people or their advocates.  If you contact JAN for advice, you should expect these typical questions:

  • What is your disability or limitation?
  • Are you now employed or seeking information about employment or self-employment?
  • Do you feel that you are being discriminated against because of your disability?
  • Do you want to know your rights under the ADA and how to file a complaint?

Questions go to one of JAN’s professional consultants experienced in the field of rehabilitation.

Lupus, Benlysta and Good Mornings

Lupus, Benlysta & Good Mornings

Several days in a row, and this is newsworthy!  Very recently I have seen signs of my lupus quieting, especially at both ends of the day.

Recently, it has been possible to count about 10 successive days of awaking feeling relatively well.  Lupus brain fog has been much lighter than normal, joint stiffness has been less severe and shorter lasting each morning, and my general sense of well-being has been consistently and significantly improved.  This sharply contrasts with a long-term pattern of feeling horrible, miserable and unable to function that has historically been part of my average morning experience.

Treatments with Benlysta passed the two month mark last week with my 4th infusion almost one week ago, delayed slightly by my trip out-of-town the previous Friday on the anniversary of 8 weeks since the infusions started.  Something about my health has been clearly different in these recent days!  Although it may take some time to confirm that these obvious signs of possible remission are due to my Benlysta treatment, there is little real doubt in my mind that the new medication is responsible for some observable improvements in my health.

I cannot recall a recent time when I felt good in the morning more than one or two isolated days each month, let alone each week.  Having now felt “decent” every morning for over longer than a week is completely unprecedented.  Yippee!

Feeling measurably better

After flying back into town late last Saturday night, it was almost a shock to wake up the next Sunday morning feeling fresh.  I was able to arise unusually quickly, be on time for an 8:00 a.m. sound check at church,  and  successfully performed a solo that was new to my repertoire  at the morning church service, without being encumbered by my usual morning brain fog.  Then, I attended choir practice, which I hate to have to admit I have missed on most Sunday mornings for months.

In addition to feeling measurably better when I get up on recent mornings, the rest of each day has been notably different, also.  Last week I recounted my surprise about feeling good the next morning after walking so far that my lupus arthritis crippled by end of the first night of my trip.  I was amazed to wake up feeling good in exchange for having an expected massive lupus flare. I didn’t expect that result after abusing my joints so badly!

On every morning of the trip, and continuing since returning home, I have felt equally good or slightly better.  This week I worked five whole days, unlike most in the past few months.  I have had a pattern of taking one or more half or whole days each week as sick leave, grateful that my ADA accommodation is so graciously supported by my employer.  Usually starting work at 11:00 a.m. can even be a struggle, but this week, I was at work on two days at 10:00.  I would really like this to be my new pattern.

After working five full days, I felt unusually perky at the evening end of each day.  After stopping work at 7:00 or 7:30 p.m. and a 30 minute commute, I still felt energetic and cheerful while fixing dinner and visiting with my family.

Most Sundays...

Most Sundays, I  have struggled just to feel well in time to attend the 10:00 a.m. worship service, and usually missed most of the 9:00 a.m. Sunday School class sessions.  My husband usually attends these earlier activities alone, and I join him in time to wave hello as he plays the piano prelude to the 10:00 worship service.

Again, today I awoke clear-headed, not groggy.  I walked without stumbling to the kitchen and got my own cup of coffee.  Within minutes of taking my morning medications, I am sitting here ready to write, and will soon to attend a special 9:00 a.m. choir practice with my whole brain and body participating.  I am looking forward to a fruitful Saturday in the hours ahead.

I praise the Lord today, for it truly is a good morning!

Lupus awareness: Someone we know has lupus!

Lupus Foundation of America lupus awareness poster

Someone you know has lupus!  A few years ago, the Lupus Foundation of America launched a wonderful awareness campaign using this slogan.   The statement was featured on a hauntingly beautiful poster of a young woman’s face, surrounded in a field of blue-green and butterflies.  The campaign very successfully raised awareness about lupus and the 1.5 million Americans who suffer with this chronic auto-immune disease.

I still display a copy of the attractive poster in my office at work.  Over the years, my own lupus awareness was gradually raised as I learned about people I knew who had lupus.  Eventually, my lupus awareness became very personal when I learned that I, too, had lupus.

Someone I knew had lupus

One of my childhood playmates was a little girl who grew up in the house next door.   We played hop-scotch, hula hoops and skated together around the neighborhood when we were young girls.  As a young married woman, she became mysteriously ill and developed disfiguring pigmented rashes on her face.  I hurt for her.  Julie has lupus.

Thirty years ago, my husband’s college friend was engaged to a lovely woman who suddenly became extremely ill with a painful disabling illness.  We have looked on at her health in frustration for years.  She has been unable to access appropriate medical treatment, and has suffered for nearly three decades.  All the while, never successfully managing her illness.  We prayed for her.  Liz has lupus.

A vibrant woman I knew received accommodation from her employer under the Americans with Disabilities Act, and was allowed to telecommute to work a portion of each work week.  This allowed her to better cope with overwhelming fatigue she often experienced.  Because of the success of her ADA accommodation, she was able to remain employed for many more years before eventually losing her long battle with chronic illness and cancer.  She became a professional role model for me.  Kathy had lupus.

Over the past few years a friend in my church struggled, first with the loss of her kidneys, then her transplanted kidney, and finally her life.  Her doctors never found a way to stop the progression of her severe chronic illness.  This amazing woman’s personal faith in God and unquenchable joy seemed to overcome all the challenges of her long battle with illness and organ failure.  She inspired and encouraged everyone who knew her.  Gaynel had lupus.

Someone you know has lupus!

Someone you know may have lupus.  Generally, the sooner lupus is diagnosed the more manageable it is.  It has been shown that earlier diagnosis and treatment reduces the overall severity and mortality rates of lupus patients.  Someone needs to tell people that they might have lupus.  More people need to know and be able to observe and identify the signs and symptoms of lupus in people around them.  Perhaps a well-informed family member or friend will know enough about lupus to notice they are at risk.  How else will people with lupus ever find out, unless they, or someone they know, is aware what to look for?

Everyone, and especially every woman, should realize that lupus is a very important women’s health issue.  Every person should be aware enough about lupus to guide her friend, family member, or even herself to seek medical advice and treatment if they have signs and symptoms of lupus.  We should know how to recognize these signs, so that we may warn people when we think they may have this potentially disabling and life-threatening disease.

Where might you meet someone with lupus?

I thought it would be interesting to bounce around some “real” numbers to compare to common situations and circumstances, to help illustrate the incidence and prevalence of lupus around us.  These comparisons may help underscore the importance of lupus awareness in our routine social settings.

Schools

Someone you know at school has lupus

Census figures put the average American household size between 3-4 people, and this tells us that the average school child may have one sibling and 4 cousins. This means that for every elementary school classroom of 30 students in America, at least one of the students in that class, one of her siblings, or one of her cousins has or will develop lupus.  (1:180)

Statistics about lupus also reveal that, among all the students attending any given school in America, one child out of every 5 classrooms (of 30 students) has or will develop lupus in her lifetime.  Additionally, for every 300 PTA Club members in that school, 2 of these members of that organization are likely to have lupus.  Do school nurses and teachers know what to look for?

Workplace

I have approximately 1,500 co-workers at my place of employment.  Statistics about the national incidence of lupus tell me that 9 of my co-workers are likely to have lupus.  I personally know of only two coworkers that have had lupus.  I wonder sometimes who the other 7 are, and if they even know or suspect they have lupus.  If they don’t know, they may have been struggling with illness like I did, without knowing what makes them so sick.  (1:150)

Church and community groups

The church where I worship has over 300 members, and many more frequent visitors to our local community fellowship.  Statistics can accurately help me predict that 2 members of my church are likely to have lupus.  This statistic gets very close and personal, when these 2 people are identified as me and someone else I know.  The other other person was my friend who recently died from lupus-caused kidney failure.

My own church is on a par with national averages for lupus in the general population.  It is questionable whether most pastors or other community organization leaders know enough about lupus to recognize it.  Would they recognize warning signs of lupus in a suffering member of their congregation or group?  Would they have adequate lupus awareness to be able to encourage women with signs of lupus to ask their doctors about the possibility of lupus?  (1:150)

460 fans in attendance were likely to have lupus

Sporting events

My husband is a great NASCAR fan, so I thought I would “run the numbers” for the throngs of people sitting in the grand stands when he recently attended a weekend race at Phoenix International Raceway.  Statistics let us deduce that out of the 70,000 in attendance at that racing event, over 460 of the fans were likely to have lupus!

Cities and towns

In the City of Phoenix where I reside, there are well over 1.5 million other people. The entire population of my city represents the total number of people in the United States that have lupus. Of these people who are my friends, neighbors and fellow citizens, statistics tell us that 10,000 other people living in my city also have lupus.

Because 90% of lupus patients are known to be women, we can estimate that approximately 9,000 women in Phoenix may have lupus.  Is there a high enough level of lupus awareness in my community, that they or someone who knows them would suspect that these women have lupus?  Is there someone around them who knows to encourage them to ask the right questions, and get the right answers that can result in their diagnosis and treatment?

Japanese disaster victims

3,000 displaced Japanese women with lupus

As I was considering all of these statistics, my thoughts turned to current events in Japan, and the estimated half-million people who have been recently displaced by its horrific earthquake and tsunami.  Statistics let us infer that at least 3,000 of these displaced people are likely to be women with lupus.

In addition to their homelessness, I cannot even begin to imagine the unthinkable plight of these unfortunate women with lupus.  These Japanese lupus patients are likely to be suffering greatly from medication shortages, inadequate shelter and rest, and extended exposure to damaging ultraviolet light from the sun.  These women are likely to experience many lupus problems as they go through this horrible disaster.  Some may even lose their lives because of impacts that stress they are experiencing may have on their lupus.

My heartfelt thoughts and prayers go out to women with lupus who are going through this extremely stressful time in their lives.  I pray for their protection, their encouragement, and their continued faith and hope through this difficult ordeal.

What indicates a person might have lupus?

Why is lupus awareness so important? Family doctors surveyed nationally admit that they do not understand lupus well enough to recognize it easily in their patients.  People who know the signs and symptoms of lupus can encourage others to seek medical advice, or ask their doctors about their own risks of having lupus.  The evidence of appropriate diagnostic criteria helps doctors determine if a patient might have lupus.

Each case is unique and unpredictable.  It often  requires a doctor to observe their patient over an extended period of time to identify the multiple ways their patient is affected by lupus before a doctor eventually suspects lupus.  From patient to patient, and from time to time in the same patient, lupus frequently changes in its scope, severity and which body systems it will attack.  This makes it very difficult to diagnose.

Because lupus attacks varying body systems, and it is so systemic in nature, it is easily mistaken for other health problems related to these same body systems.  Typically, a patient waits multiple years and consults with several doctors before their lupus is accurately diagnosed.

Early diagnosis and treatment are known to slow the progression of the disease and increase life expectancy and reduce mortality.  Diagnosis is the first logical key to a patient receiving the treatment they need.

Additionally, lupus is a potentially disabling and life-threatening disease with at least two under-recognized high-risk complications.  It is very easy to understand why these manifestations of lupus are so import to women’s health.

  • Lupus is one of the major causes of kidney failure
  • Lupus is a significant cause of heart disease in women

Someday, a life helped by your increased lupus awareness might be very close to you.  It might even be your own!

Lupus arthritis on a cloudy day…

On cloudy and overcast days my lupus arthritis wakes me

On cloudy and overcast days, my lupus wakes me up differently than on sunny days.  On these days, my first awakening awareness is pain in my limbs.  Symptoms of lupus arthritis, such as joint pain, stiffness, warmth, joint redness and swelling are experienced by most lupus patients.  Symptoms tend to be more intense in the morning, and usually improve a little more as each hour of the day passes.

I’m not really sure why, but my lupus arthritis always seems to be worse when it’s cloudy outside.

Increased morning joint pain is often one of the signs that my lupus is in flare.  Usually, lupus arthritis symptoms involve the same joints in both hands or feet equally, and start first in joints at the tips of all my fingertips and toes.  More intense flares of my lupus tend to result in bone and joint pain moving farther up in my limbs and deeper within my joints and extremities.

Deepest flares often involve deep pain and aching in the long limb bones between joints affected by lupus arthritis, especially inside the bones of my forearms and calves.  In the most severe lupus arthritis flares, I can even experience deep pain and aching within my upper arm and thigh bones.  These most pronounced lupus arthritis symptoms are almost always accompanied by muscle weakness, extreme fatigue, malaise, mouth/nasal ulcers, mental clouding and sometimes fever or cold sweats during my sleep.  These are the roughest, darkest days.

Progressively deeper and higher wrist, elbow or shoulder pain, or foot, ankle, knee or hip pain can tell me that my current lupus flare is likely to be deeper and potentially longer lasting.  As any given morning progresses, the speed and degree of alleviation of my lupus arthritis symptoms is sometimes a good indicator of the overall degree of a current lupus flare.

Quickly dissipating mild to moderate joint pain, stiffness and swelling are common daily symptoms of lupus.  If this type of arthritis clears quickly, it does not usually signal any flare of my lupus.  That is my “new normal” due to having lupus, and not alarming. It is the days that it doesn’t ease up that my arthritis is telling me that my lupus has moved into a more active mode.

The good news was it was lupus arthritis

When my rheumatologist first examined me, he included many lab and radiology tests.  When he was finally able to tell me what was “wrong” with me, he asked if I wanted the good or the bad news first.  I asked for the good news, and his reply was “its not rheumatoid arthritis.”  Okay, so the bad news was it was lupus!

My doctor explained that the reason not having rheumatoid arthritis was such good news, was because rheumatoid arthritis destroys bony joint tissue, while lupus arthritis attacks the connective tissue instead.  He showed me the x-rays of my stiff and swollen hands, and explained that the lack of bony damage along with my severe inflammation was a sure sign that it was lupus arthritis and not RA.

On the exterior, my reddened ballooning finger joints looked distorted and disfiguring.  But, on the inside, there was no deformity in my finger bones.  My hand inflammation was all located in the soft tissue of my joints and this was better news than an RA patient would get with hands that looked as bad as mine.  There was hope my hands would feel and function better again with the right treatment.

So, for many years after my initial lupus diagnosis, I took an anti-inflammatory drug to reduce the swelling, plaquenil to control my lupus, and steroids during periods of the most extreme joint inflammation.  This made a great difference in restoring a great deal of mobility, strength and activity to my daily life.

One-handed stapling hurt my finger joints

Once I understood that it was soft-tissue in my joints that was under attack, I began changing certain behaviors that had a tendency of stressing my joints.  At work, I realized my finger joints were being strained and swelling from picking up and using a stapler in one hand to fasten legal papers.

I requested an electronic stapler as a simple ADA accommodation and it made a great difference in preventing joint inflammation.  However, my electronic stapler started a trend, and other workers wanted them.  It was a small price to pay for improving this aspect of ergonomics throughout my entire legal office.

One of our homes came complete with a flight of stairs.  Many times my knee pain was so disabling that my husband had had to carry me up the stairs.  This might seem a little romantic, but we knew we needed to change the living situation for my health.

After awhile, my husband and I determined it would be better for me if we moved to a home where everything was on the ground floor.  This helped me not aggravate my fragile knee ligaments that had made climbing stairs impossible for weeks at a time.  I even stopped using stairs at work, and began using wheel chair ramps and elevators to protect my damaged knees.

Climbing stairs hurt my knee tendons

I still get caught off guard occasionally during a fire drill at work, and have to descend a couple of flights of stairs.  For days afterward, my knees suffer and walking is very difficult.  Thankfully, I miss most of the fire drills when they take place early enough in the morning to be over before I get to work.

I eventually learned more about my limits.  For instance, my lupus arthritis would not allow me to walk all day at a mall, or walk miles for exercise.  I also found I could not use a treadmill, without causing pain and swelling in my knees and foot joints.  So, I found some alternative, no-impact exercises that were easier on my arthritic joints:  yoga, cycling indoors on a fluid trainer (away from the sun,) and indoor swimming.

I changed my philosophy toward doing housework.  I no longer try to vacuum, sweep or mop my whole house in one day.  Instead I do things in smaller, incremental pieces.  I clean the floor in one room and wait to clean another room the next day.  I no longer try to do all my laundry in one day, but instead wash and dry one load, and then wait for a different day to do the next load.

Now, taking care of my joints is just part of taking care of the whole “me.”  They talk to me, and I listen.  Once, I shredded an inflamed calf tendon from over exertion.  Now, when my tendons and joints speak to me, I slow down and heed their warnings of the possible lupus flare ahead.  I baby my joints, yet I exercise them regularly to strengthen them, too!

Lupus arthritis gives me the most challenge on cloudy, overcast days like today.  But, slowing down to live within my physical limits, is the key to maintaining my maximum possible mobility.

BLOG September 2014 POSTLOG:

This post has surprised me with the ongoing interest it receives.  It continues to be one of the top ten favorites among the readership of Lupus Adventures, remaining weekly in the top ten posts among my readers ever since it was published over three years ago.  I would like to share this excellent educational information regarding the use of biologics to treat autoimmune disease.  I would suggest readers review a recent excellent article, Find the Best Medications for Rheumatoid Arthritis: overview, full report, and cost comparison of 18 drug options for rheumatoid arthritis, at Healthline.com about how biologics are used to treat Rheumatoid Arthritis, especially because of the close relationship between RA and Lupus, and the common drugs used to treat both conditions. See, http://www.healthline.com/health/consumer-reports-rheumatoid-arthritis.

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