Malingering – defined as the focus on getting something one is not entitled to, including being excused from responsibility, and for personal gain.
One of the key things I was asked to do this week was “prove” that I am unable to work. To explain what changed which forced me off the work line and onto the disability line. Frustrating, but a reasonable request.
Here is an excerpt of my explanation for my lawyer, as he fights to obtain the benefits that I am owed:
I worked with worsening health from 2009 – 2015, while searching for something that would enable me to keep on going. Following my work-related trip to China in 2009, I noticed a marked decrease in my ability to keep up. I was tired all the time. I was congested every morning, and I was usually coughing up crud and blood on a regular basis. While continuing to work, I began checking the bucket list items off my goals (such as going to Australia), as I truly hoped to be able to simply pass away one day, without having stopped work. It was no surprise that COPD is end stage for Asthma, and my body has clearly reached that point.
While working, however, I went from doctor to doctor to try and find a solution to my increasing tiredness, and the fact that I was finding it harder to keep up at work and at home. 2014 was a milestone in that I was now tired all the time, and often slept whole weekends away trying to make up for the constant exhaustion / tiredness. Household chores were slacking, and I just wasn’t able to find any kind of work / life balance.
I was often unable to complete the drive home from work without a nap mid-way, and I worried about my safety and that of others while I was unable to get on top of the exhaustion. I had an accident in October 2014 that was deemed my fault, and this was ON THE WAY TO WORK vs. going home. The lack of oxygen / exhaustion was taking over my life.
While I did make an appointment to visit an endocrinologist for a full workup (Dr. C*****) in October 2014, instead of concentrating on the peri-menopause and related hot flashes / tiredness, etc., she determined that I had diabetes, and put me on a regimen of weight loss, gentle exercise (swimming and walking) and food monitoring.
Taking away anything that gave me energy only made the daily bone-tiredness worse, and my blood sugar began to drop dramatically every afternoon, despite following a sound diet (given my health issues with fruits and vegetables). I began to have worse problems with my health as my vision was blurry on a regular basis, and my sugar was falling every afternoon within an hour of eating lunch (usually a cup of chicken, some ketchup, corn kernels and a cup of water).
In December 2014, Dr. N***** advised me to start taking the COPD medicine, Anoro Ellipta, which I began taking in February, following my return from Australia. The Anoro Ellipta made me feel fantastic, until it made me feel like crap. I had more energy for swimming, for instance, but would then over-do and have incredible back and lung spasms because I’d moved too fast. It was very scary to be swimming and love it, but be thankful I was wearing a floater belt as I was losing all ability to keep control once a spasm hit and I couldn’t do anything but struggle to get air.
The Anoro Ellipta also caused skin rashes, arthritis in my right hand, sty’s on the lid of my left eye (usually), or under my left eye, and the blurry vision got worse. But, I still kept on working and doing my best for my employer.
In April, when I had an appointment with Dr. N***** to take my readings following the start of the Anoro Ellipta, we could see that the Anoro Ellipta was not having the great impact on my breathing that one could hope, and I asked for additional tests as placeholders for bone density (a risk with this drug), and to try and understand the incredibly sharp pains I was having between my shoulder blades and traveling up my neck. Dr. N***** wanted me to stay on the medicine for 6 months, until our next appointment in August. I agreed, under protest.
In May, I had 2 car accidents in a relatively short period of time, and it was clear that the Anoro Ellipta wasn’t helping my overall tiredness – it was just putting it off until I needed to stop everything and sleep for an hour or two, as I was out of energy every day. I was now coming home from work and taking a nap, getting up for an hour or two, and then going back to bed. I had no energy to more than work and sleep.
I went home in June for a family event, and even on vacation, the spasming pain would hit out of nowhere and was excruciating. I hadn’t been able to find any kind of trigger, and it was crazy to be happening while I was clearly on vacation and should have been fully relaxed. The body rashes were aggravating, and I was no longer reading anything outside of work as my eyes just couldn’t keep up. I’d had the CT scan from Stanford at the beginning of May, and it was clear that the damage to my lungs was now at COPD stage 3+ (severe), and the Anoro Ellipta wasn’t making a difference. Or, enough of a difference to make it worthwhile.
After the car accidents and the family vacation, I wrote to Dr. N***** to ask him about options. Was I a whiner, or was there seriously something wrong with me that the medicine couldn’t fix? I asked him to be my tie-breaker or conscience, as the car accidents were worrying me, and the constant exhaustion wasn’t getting any better.
We met in August, and Dr. N***** confirmed that he’d back me for filing for disability. While I would prefer to work, and I hope to be able to get into some sort of part time or flexible employment, if possible, once certified, he agreed that I should stop working and see what happens to my health.
That appointment was August 24th, at which time Dr. N***** also changed my medicine from Anoro Ellipta to Striverdi Respimat. While notifying my boss in Germany about my health issues, I was also clear to ask to be considered for part time work. Leaving work is hard, and living in California, it’s crazy to do unless one is wealthy, and I’m anything but rich. However, there doesn’t appear to be anything I can do to remain in good standing with [my employer] as they don’t have any part time work for me.
As of Saturday, August 29th, the Striverdi Respimat began giving me heart issues, and the pain in my right arm (already aggravated by the Anoro Ellipta with arthritis-like symptoms) was excruciating. While in the middle of a painful throbbing of my chest and arm, I called Aetna’s nurse / helpline for an understanding of the symptoms. The nurse thought I was having a heart attack, which is also one of the side effects that both the Anoro and the Striverdi may cause.
Since I did not want aggressive care, and I didn’t want to spend any time in the hospital over yet another medicine side effect, I waited an hour until the spasms stopped, and then drove myself home from the DMV. The nurse on the helpline confirmed my thinking, so I went to my backup plan to let nature take its course when it’s time.
Thereafter, Dr. N***** agreed I should not take the Striverdi any more, and we’re taking a wait-and-see view of my health. Since that day, it has been nothing but research and rest for me, as I’m looking at alternatives which might restore my health and allow me to work again. Stem cell treatments, lung reduction surgery, etc.
Failing being able to restore my health, I’m hoping that, once I’m on federal / long term disability through Social Security, we can find me a less-critical job that I can do which won’t jeopardize the safety of others (by forcing me to drive when tired), and which won’t impact anyone else’s critical schedule if I’m too ill to do my job.
In my final days at [my employer], I took 10 days to draft a 40-page contract, and the successor who replaced me said it was a piece of crap (my phrasing; his emotions), when I handed it off to him because I couldn’t get it executed by the Vendor prior to September 30th. I am responsible for millions of dollars and noticing minute details to craft strategic solutions in my daily work, and I just could not keep up with the long hours, the lack of sleep, and the side effects of the medicine.
Since I’ve been off work, I haven’t done much. While I was really good in October to keep to a normal schedule, the toe nail surgery in November, combined with the damp / rainy weather, conspired to keep me away from walking / swimming for almost 6 weeks. Efforts to return to that exercise schedule have been hampered by the ongoing congestion and difficulty breathing / sleeping that I have experienced through to this month, my 6th month on disability. I’m mostly praying for the rain to stop so that my lungs will dry out from their currently “swampy” state, as I’m very concerned if this lack of breathing ability is my new “normal”.
While I am still researching stem cell treatments to try and repair my lungs, that’s not covered by insurance, and the jury is out about whether or not such a treatment will work for me, and have a lasting improvement.
It’s been a relief to not have to hide when I don’t feel well, and to be able to cancel plans and stay home / indoors if things aren’t going well for me on any particular day. I frankly don’t know how I’d go back to work and be able to keep up / keep my former job, if I was forced to return to those duties. I would, of course, do my best, but the natural stress that is part of the competitive nature of my job will continue to aggravate my underlying weaknesses.
Should sending me back to work for my former employer be the decision that long term disability chooses vs. accepting the fact that my lungs are shot, it’s going to force my decision to try the stem cell surgery with my 401K savings as I don’t think I could safely and effectively do it otherwise.
So, that’s how this week went. I’m in the process of renewing my fishing license (since the drought has been pushed back), and hope that days spent in the sunshine on Loch Lomond may help to dry out the swampiness in my lungs to the point that I may have more energy.
I managed to get the living room vacuumed this week (major progress), and my Better Breathers Club also recommended wearing a face mask while doing home chores (great idea to keep the dust out of my lungs). We’ll see how things go as time progresses.
For today, I’m going to see if I can find a reasonably priced exercise bike so that I am at least trying to do some stationary pedaling vs. simply sitting and breathing while I watch my energy and my life fade away.