View Full Version : When is it time to think about long term disability?

04-02-2006, 09:14 PM
I wanted to see what the opinions are as to when it's time to think about long term disability. I had surgery in January but then developed a staph infection in February. I'm currently going to wound care twice a week and am in constant pain. I also need to have surgery for Morton's neuroma and joint replacement for both thumb joints.

I've been struggling to work at a reduced schedule and can't even think about having more surgeries after the disaster that happened with my hip. My current quality of life is not what it should be for my age (I'm 46). I was diagnosed last July with lupus of the brain, went through 6 mos of chemo and now am on Cellcept. I recently had a new MRI and lumbar puncture to check my progress and although the lumbar puncture showed there was some improvement, the MRI showed I have a new lesion in my brain.

I'm so depressed with trying to keep my job, deal with insurance companies to pay for my hospital stay and 4 surgeries, and then to deal with constant pain, I just don't know what to do. To top it all off, I started going through menopause! My family keeps telling me I need to reduce my work schedule even more or find something so I can work at home but my job brings in the majority of our income. I've been researching the policy for long term disability but I just want to be able to get back to normal and be able to provide for my family like I should.

Any advise would be welcome!

04-04-2006, 08:22 AM
Hi Catlady:
I am so sorry to hear that you are having to deal with so much and have so few options. Long term disability is probably something that you should discuss with your doctor and then with a disability representative in order to determine when or if you are ready to file a claim.
Working from home is a viable option if you can find a job that pays well. Have you spoken to your employer about this option to see if there is a position that you can take, with commensurate pay, that would allow you to work from home? With Lupus, you are entitled to ask for job accommodation under Title I of the Americans with Disabilities Act (ADA):
"The ADA does not contain a list of medical conditions that constitute disabilities. Instead, the ADA has a general definition of disability that each person must meet (EEOC, 1992). Therefore, some people with lupus will have a disability under the ADA and some will not. A person has a disability if he/she has a physical or mental impairment that substantially limits one or more major life activities, a record of such an impairment, or is regarded as having such an impairment (EEOC, 1992). For more information about how to determine whether a person has a disability under the ADA, visit http://www.jan.wvu.edu/corner/vol02iss04.htm."
Following are some accommodations that the ADA has suggested to employers for persons with lupus. Some may fit your situation:
Activities of Daily Living:

Allow use of a personal attendant at work
Allow use of a service animal at work
Make sure the facility is accessible
Move workstation closer to the restroom
Allow longer breaks
Refer to appropriate community services
Provide access to a refrigerator

Cognitive Impairment:

Provide written job instructions when possible
Prioritize job assignments
Allow flexible work hours
Allow periodic rest periods to reorient
Provide memory aids, such as schedulers or organizers
Minimize distractions
Allow a self-paced workload
Reduce job stress
Provide more structure


Reduce or eliminate physical exertion and workplace stress
Schedule periodic rest breaks away from the workstation
Allow a flexible work schedule and flexible use of leave time
Allow work from home
Implement ergonomic workstation design
Provide a scooter or other mobility aid if walking cannot be reduced

Fine Motor Impairment:

Implement ergonomic workstation design
Provide alternative computer access
Provide alternative telephone access
Provide arm supports
Provide writing and grip aids
Provide a page turner and a book holder
Provide a note taker

Gross Motor Impairment:

Modify the work-site to make it accessible
Provide parking close to the work-site
Provide an accessible entrance
Install automatic door openers
Provide an accessible restroom and break room
Provide an accessible route of travel to other work areas used by the employee
Modify the workstation to make it accessible
Adjust desk height if wheelchair or scooter is used
Make sure materials and equipment are within reach range
Move workstation close to other work areas, office equipment, and break rooms


Minimize outdoor activities between the peak hours of 10:00 am and 4:00 pm
Avoid reflective surfaces such as sand, snow, and concrete
Provide clothing to block UV rays
Provide "waterproof" sun-protective agents such as sunblocks or sunscreens
Install low wattage overhead lights
Provide task lighting
Replace fluorescent lighting with full spectrum or natural lighting
Eliminate blinking and flickering lights
Install adjustable window blinds and light filters

Respiratory Difficulties:

Provide adjustable ventilation
Keep work environment free from dust, smoke, odor, and fumes
Implement a "fragrance-free" workplace policy and a "smoke free" building policy
Avoid temperature extremes
Use fan/air-conditioner or heater at the workstation
Redirect air conditioning and heating vents
Provide adequate exhaust systems to remove fumes from office machines
Allow individual to wear a respirator mask
Allow work from home

Seizure Activity:

Eliminate the need to use sharp objects
Eliminate blinking and flickering lights
Replace fluorescent lighting with full spectrum or natural lighting
Use computer monitor glare guards, adjust monitor intensity and color, and decrease the cursor speed of the mouse
Provide protective clothing/equipment
Modify job tasks requiring fine finger dexterity
Allow flexible work hours
Allow periodic rest breaks
Allow work from home

Skin Irritations:

Avoid infectious agents and chemicals
Avoid invasive procedures
Provide protective clothing

Stress Intolerance:

Develop strategies to deal with work problems before they arise
Provide sensitivity training to coworkers
Allow telephone calls during work hours to doctors and others for support
Provide information on counseling and employee assistance programs

Temperature Sensitivity (including Raynaud's Phenomenon):

Modify work-site temperature
Modify dress code
Use fan/air-conditioner or heater at the workstation
Allow flexible scheduling and flexible use of leave time
Allow work from home during extremely hot or cold weather
Maintain the ventilation system
Redirect air conditioning and heating vents
Provide an office with separate temperature control

Vision Impairment:

Magnify written material using hand/stand optical magnifiers
Provide large print material, screen reading software, and large-size high resolution monitor
Control glare by adding a glare screen to the computer
Install proper office lighting
Allow frequent rest breaks

I hope that this has been helpful. Let us know how you are doing and what solutions you are able to find.

Peace and Blessings

04-06-2006, 09:57 PM
We actually have adjustable workstations, ergonomic chairs and I have an ergonomic keyboard.

I've already made a suggestion to have automatic door openers but we have to badge in to gain access to each room. They say they are investigating how to get a door opener that can also serve so the employee can swipe their badge. It sounds like it's a cost issue.

I avoid using my wheelchair and just use my walker when I have to leave our production floor because it's terribly hard to get through the doors.

I just hope I can heal so I don't have to use the wheelchair anymore. My wound is healing quickly but the bottom part isn't healing as fast so the dr may have to open it up again. We'll see what happens.

Thanks for your help!

06-06-2006, 11:56 AM
Wow, what a great list of modifications. I tried to find this on the ADA site but couldn't. Where did you get this Susie? Is it part of ADA case law on a lupus case or ... ?

To the OP, I'm sorry you're going through this. I'm 48 and do not have near as much pain as you do. My big problems have been fatigue and cognitive problems, confusion emotional turmoil etc. And like you my menopause started at 45 (the year after sle came on) which made for a lot of adjusting.

Personally I would have been thrilled to work at home 1 or 2 days a week to lower both stress and exertion. My employer wouldn't allow it, but they were sons of guns, and if yours would, I would grab onto it. Also have you taken a medical leave? You're entitled to 12 weeks (at least in my state and I think maybe federally too) of leave and although it's unpaid, if you can get temporary disability -- much easier to do than permanent -- then you could at least have more time to relax and heal from your current challenges.

06-06-2006, 02:11 PM
Well since my original posting, I got yet another staph infection in my hip. My dr did cultures on 5/4/06 and called me on 5/5/06 to let me know that I had to go back into the hospital for more surgery. This time the staph was MRSA which can only be treated by a couple of antibiotics. The antibiotic I had was Vancomycin which is as rough on your veins as chemotherapy. I had to have a PICC line installed and had to continue IV antibiotic therapy for a couple weeks at home. I was getting home health care but now that I'm going to attempt to go back to work next week, I cannot have home health care any longer. I went to one of our hospital's wound care centers and found that I have a yeast infection in the wound due to the type of dressing that had been applied. The dressing has plastic which kept moisture instead and thus a fungus started growing. My dr consulted with the wound care center and they told him what they found. He said I have to do daily dressings and let the water run over the wound when I shower to help clear this up. He said a fungul infection is harder to heal than a bacterial infection and we have to get a handle on this.

These are some of the reasons I'm considering trying to file for disability. My immune system is just not fighting these infections and I've already had a total of 7 surgeries on that hip so far this year. I've been told that they always turn you down the first time but don't how bad it has to get before you can get disability.

06-07-2006, 10:28 AM
Ihate2Shave: I actually called the ADA and spoke with a counselor who subsequently mailed me the information!!

Catlady: I do not know how bad they want you to be, but it seems to me that you should prepare yourself for a fight, because they will fight you no matter how obvious you disability is. Get an attorney and fight! Be prepared for a denial (they always deny at first) and then get out your boxing gloves. It will be a bumpy road, but I pray that you win. You deserve to win!
Best of Luck