One Patient's Positive Perspectives

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.

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Comments on: "Lupus, sick days and alphabet soup" (8)

  1. […] 12. Lupus, sick days and alphabet soup – September 21, 2012 – 584 views […]

  2. The company that I worked at invoked the FMLA (90 days) and dumped me. Forget about the ADA.

    • USA: I am so sorry to hear that. So far, the FMLA only gives us 12 weeks total taken any consecutive 52 weeks of work.

      The ADA is different, and does not specify any limitations or amounts of time that can be taken off work, either all in a stretch or intermittent if the doctor agrees. The ADA runs along side FMLA, and at the same time, but the issues are very different than what FMLA covers.

      ADA gives us a right to work, while FMLA gives us a right to be off sick from work. ADA says we have to be able to do our job with an accommodation, and the accommodation has to be reasonable.

      Sometimes, leave is covered by intermittent FMLA, and ADA where the leave is the accommodation requested. Part of my ADA request was to use vacation instead of sick leave any time my sick leave had run out, or even to take some days without pay if necessary, and not be penalized for using too much sick leave. My employer felt that was reasonable.

      ADA and FMLA give us protected status, ADA to keep working and FMLA to return to work but only if we are gone no more than 12 weeks.

      Over time these laws may change the details to be more friendly to patients that need more than 12 weeks off, but right now, unfortunately, that is all they give us. LA

  3. Wish I had known about the ADA/FMLA when I was working. I gave up a job that I loved. Thanks for all the information you always give us and thanks for letting me know that I’m not crazy because I feel bad in the mornings but then usually in the afternoons I’m able to function much better. I thought it was all in my head, but reading your blog helps me to know (my doc as well as she doesn’t know much about Lupus I’m learning) that I’m not crazy. So thank you for all the info you pass to us!!!

  4. I also took FMLA, then used up my PTO (paid time off) then short term disabiity and finally, long term disability. I was working for a hospital organization, matter of fact. By the time my long term disabilty ran out, my exhusband passed away, so I filed for his Social Security.

    • MCM: Thanks for your feedback on the options you were able to use. It shows how much ae need to know what choices we have in the event our lupus interrupts our career. We lupies have to thing about that as an ever present possibility, and do what we can for the unexpected changes in our health. LA

  5. That was a great and informative post! Good stuff to know as I embark on my journey back into the workforce. Fortunately my job is octal telecommute and my hours begin at 11 am after the morning yuck invests ebbs a bit!!!

    • LW: Thank you so much for your last couple of comments. It is good to hear you have a telecommuting job. For some lupus patients telecommuting is the only way they can keep working. Technology has really given us some new options and solutions. Have a great day! LA

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