One Patient's Positive Perspectives

Posts tagged ‘disability’

Lupus: “Dis”ability or This Ability?

Hand_wash_dishes

Soothing Warm Dish Water

Washing dishes can hardly be described as an especially inspiring activity, but sometimes during such mundane activities a meaningful thought or two pops up.  So, what do you think about when you are washing dishes?  A couple of mornings ago waking in the first morning light of the chilly winter morning, there was pain.  Cold tiles on the floor chilled the bones of bare feet walking through the frigid dark kitchen.

A pair of stiff, swollen hands welcomed an excuse to soak in warm sudsy water and bubbles filling the kitchen sink.  Meanwhile, my cloudy morning brain struggled to connect.  Painful wet hands drew my attention to thoughts of personally disabling aspects of lupus.

These were not exactly the most upbeat morning thoughts!

Hands slipping into warm dish water almost seemed therapeutic, but the pressure of twisting a wet dishcloth inside a glass brought a painful wince.  Next, trying in vain to grasp and remove the lids from a coffee mug and thermos, after several tries, quivering tendons and stinging knuckles announced it was just time to give up!  With futile efforts abandoned, the stubborn cup and thermos would just have to sit there beside the sink all day, waiting to be opened by the male culprit to come home who had tightened them so firmly the previous morning.

Wordle Disability or This AbilityWhile scrubbing the remaining dishes, amusing thoughts were running around in some foggy grey matter, threatening to stimulate and waken a foggy morning brain.

Disjointed thoughts formed into a series of silly word plays, tossed around during the simple kitchen chore.  Inspired without any clear reason by a glass, dishwater and lupus arthritis, these words scampered around as disjointed musings:

Glass half full or perhaps half empty,
How to be a victor not a victim?
Disability, dis-ability, dish water, dish-ability,
No!  This-ability, THIS ability!
Think instead about ability!
Now, there was a better noteworthy thought!

Even though many activities are painful for those of us with lupus arthritis, there are many activities that are nearly or completely unaffected by it.  These are what we should focus on and be thankful for.  The thought about half full and half empty glasses, and a silly dishwashing soliloquy had triggered an unexpected New Year’s resolution of sorts.

This year should victoriously focus on being thankful for “this” ability and “that” ability that I have, instead of giving the negative aspects of Lupus any undue attention. Perhaps we should be intentionally thankful while thinking of all the verbs (ACTION words) that describe many remaining abilities, such as:

  • doing
  • thinking
  • walking
  • playing
  • sitting
  • standing
  • driving
  • cycling
  • cooking
  • cleaning
  • mopping
  • sweeping
  • working
  • thinking
  • writing
  • rejoicing
  • singing
http://www.calumo.com/blog/wp-content/uploads/2012/10/forgot.png

What can you add to the list?

And yes, even washing dishes!

What are yours?  What positive actions would you add to your list?

It is resolved, then!  This is the year of this, that and every ability we have!

We can choose to celebrate the abilities we have, while striving to accept and minimize our disabilities with poise and grace.

[Note:  Paragraph two was edited after posting to correct the grossly disjointed sentence about a cloudy brain, written by a cloudy brain!]

Lupus and reasons to go to work

Going to Work

Working is one of the critical challenges many lupus patients must face.  Work is seldom easy for anyone, with or without lupus, or people would not expect pay to entice them to report each morning to do their jobs.  Work — the term implies effort, expended energy, accomplished acts, labor and toil. None of these terms conjure pictures of pleasure and ease.

Yet we work on, because the simple truth is that money is an essential resource and work is one of the most honorable ways to get it.  (Discussing any dishonorable ways to get funds is well beyond the scope of this blog!)

Lupus is predictably unpredictable

Judging either work or disability as superior to the other, or more appropriate for a lupus patient, would be incredibly unkind and short-sighted.  However, some dueling pros and cons of work vs. disability do merit a little discussion.  For each lupus patient, the side of this debate they find themselves on may change from one season of their life to the next.

Lupus is predictably — unpredictable!

Work or Disabilty?

Some of us with lupus may never have to face the decision of needing to draw on disability benefits, but very many lupus patients do.  Patients with milder lupus may never experience symptoms that threaten their ability to hold down their job.  However, some of us find that activities of daily living nearly or completely become an insurmountable challenge.

Sometimes, life with lupus is just plain difficult, and this can threaten our livelihood.

Driving to Work

Some days I carry on a silent debate in the interior of my car while commuting.  Should I keep on working with lupus if it is very hard to do so?  As I work through my arguments against my imaginary debate opponent, there are a few competing points I make.  Routinely, for the fair and complete exposition of the issues, I switch sides with my opponent. As I weigh these issues, I invite God to join my debate, and to counsel my heart with His wisdom and to lead me to each change in path I should take.

The Case for Working

Many factors help make the case for continuing to work with a lupus disability, versus dropping out of the workforce due to chronic health difficulties.  No matter what it takes, some people like me feel compelled to try to keep their jobs as long as possible, even against sometimes almost insurmountable personal odds.

Here are some of my favorite arguments in support of working that compel me for the present to remain in the daily battle:

  1. Living always takes money and I have more of it when I work (pretty basic, I know, but extremely obvious and true)
  2. Life with doctor visits and prescriptions costs more money than life without them
  3. Superior medical care is available with employer’s insurance coverage
  4. Keeping busy, active and distracted from my personal health problems is better than sitting at home staring at the walls
  5. Opportunities to help others and make a difference contribute meaning to my work
  6. Socialization in the workplace promotes my psychological health and balance
  7. Self esteem is derived from completing workplace projects and accomplishments
  8. Fulfilling opportunities to mentor and train co-workers and work group team members give me satisfaction
  9. Having a motivation to get up and push myself every day keeps me active
  10. Intellectual stimulation and challenge keeps me vital and mentally sharp

The Case for Retirement

Here are a few of my opposing arguments, that, if they become true could cause me to switch sides in the debate:

  1. If I reach a point that continuing to work makes my lupus flares get worse and worse
  2. Working takes a lot out of me, and someday it may require more than I have to give
  3. Mornings are really hard, no matter what!  This won’t get easier
  4. The stress of my career and job responsibilities may become more than I can handle
  5. If I get to a point where I am pushing too hard and getting sick after every major project
  6. If persisting memory problems get bad enough to make managing workload and staff difficult
  7. If I need more rest than I can get in the evenings and on weekends
  8. When I reach the magic retirement age that my pension becomes enough to live on comfortably, and is not going to improve enough to merit working longer
  9. (Shudder at this thought) If we should ever see the repeal or undermining of protections given to people with chronic serious health conditions under the ADA or FMLA
  10. If I ever permanently lose the heart to fight the daily fight

Crossroad ahead

These are the some of the issues that are vetted out during my ongoing debate about working vs. disability.  It is during the most overwhelming times of lupus flare that I am forced to focus on the nearing crossroad ahead, to view the split in the path before me heading in two contrasting directions.  Several times in my career, I have approached the crisis of such a crossroad.

I keep working, and my debate continues.  In the quiet of my car I drive on toward work each day, and ponder the road that lies ahead. If in the interior of my vehicle, the speedometer, car radio, or steering wheel ever respond to my solo conversation, I will know with certainty that the long debate is finally over.

Until then, to quote the seven dwarfs of Disney cinema fame, I whistle and sing the happy song, “it is off to work I go.”

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.

Free sign up

Registration is free through an online seminar hosting service, EventbritePlease 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

Lupus Treatments 9-20 2PM

Coping and Living with Fatigue 11-1 2PM

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.

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.

Upcoming LFA Learn from the Experts

 

Lupus: Learn from the Experts LFA Educational Series

This morning I registered to take part in one of three upcoming  educational teleconferences sponsored by the Lupus Foundation of America.  On June 11th, the topic will be Central Nervous System (CNS) Lupus.

CNS Lupus presents many challenges to me on a daily basis.  These upcoming conference calls will provide excellent information about living with lupus, and feature some of the world’s leading lupus experts.  All of these educational sessions are free to participants, and links for registering are included below.

Central Nervous System (CNS) and Lupus
Saturday, June 11, 2011 1pm-2pm EST
Presenter: Betty Diamond, MD
To register for the CNS Teleconference, click here.
To download Dr. Diamond’s PowerPoint presentation for this teleconference, please click here.

Social Security and Disability and Lupus
Saturday, September 17, 2011 1pm-2pm EST
Presenter: Sheri R. Abrams, Attorney at Law
To register for the Social Security and Disability Teleconference, click here.

Parents Caring for Children with Lupus
Saturday, November 19, 2011 1pm-2pm EST
Presenter: Emily von Scheven, MD
To register for the Parents Caring for Children with Lupus Teleconference, click here.

[Edited by the author on June 1st to correct inadvertent omission of final unsaved edits in paragraph 2 above.]

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