Living with a chronic illness is difficult – especially when working or at other times of high stress. This is my story and a guide for many of my potential readers who are suffering from Lupus or some other chronic disease that affects your life and work. This article is also helpful for managers who have employees who suffer from Lupus or have a similar issue.
My Story
In late 2015, I began having minor pain in my hip. I had been on a sort of health kick for a few years: I quit smoking, I started walking to get low impact exercise, and so on. I literally walked 3,000 miles over a three or four year period. The hip pain started when I was walking home from the gym after walking a few miles on the indoor track. I thought I had pulled a muscle, and didn’t think much of it. After several days of enduring the hobbling around with the sore hip, I figured it might be tendonitis. So I went to the nearby urgent care clinic to see what they could do about it.
I had been taking 2 Aleve each day (1 morning, 1 evening) because I had been developing arthritis in my hands. I attributed this to typing on computer keyboards and playing musical instruments for 4+ decades, and thought nothing more about that. The doctor at the urgent care clinic put me on prednisone, a corticosteroid: 6 pills the first day, 5 the second, 4 the third, and so on, until I ran out. The doctor also told me to double the dose of Aleve I was taking.
Sure enough, the hip pain did go away and I thought I was out of the woods. Then I started noticing that reaching for things caused a twinge of pain in my left shoulder. Again, I ended up at the urgent care clinic, thinking it was tendonitis. These pains were in the joints, and felt like inflamed tendons to me. They did the prednisone thing again and put me on a non-opioid pain killer, Tramadol.
Over the course of about 4 months, the joint pain spread to virtually all of my joints – even my jaws and throat were affected. The pain worsened as time progressed, too. I could barely sit down in a chair from a standing position, or get in bed or roll over once in. I hit rock bottom one night when I fell out of bed trying to get up and I could not get up without help from my wife. I was in extremely good shape before all this started; it was a severe decline in just a few months.
I ended up at the urgent care clinic 6 times in total in that span. I had x-rays taken of my hands and shoulders. Blood tests. Stronger (than Aleve) NSAIDs, more Tramadol. I wasn’t getting better, but worse.
I was taking a lot of Tramadol just to tolerate the pain. When I ran out, I found a friend who had some he wasn’t taking anymore and took his.
The 5th time, they had me do a blood test. The 6th time they said the blood test showed a positive ANA and they normally check a box on the blood test order to do further tests if ANA positive, but didn’t. So they had me take another. The doctor called me on the phone a few days later and told me, “you have Lupus.”
Oddly, the diagnosis was a huge relief. Prior, I had no idea if I was outright dying. I googled Lupus and found out that people can live with it for a normal life span, if treated with medications properly.
Lupus is an autoimmune disease. My immune system is so strong that my immune system attacks my healthy cells. It went after my joints, my nervous system, and skin. It caused me to run a low grade fever off and on. It can go after your internal organs: heart, kidney, etc. I am, so far, lucky that it hasn’t gotten that far.
In retrospect, it got worse as I went on my walks. It turns out that being out in the sun triggers the worsening of the symptoms of the disease. I also think back on the arthritis in my hands and how my feet hurt on my walks sometimes and how I haven’t had a cold or flu, except three times in a 6 week period, since 1998 (strong immune system is good for something!). It typically takes years for a Lupus diagnosis to be made; the patient suffers various symptoms off and on until the right doctor does the right test and catches it.
I went to my primary care physician to ask for a referral to a rheumatologist. When I told her, “I have Lupus,” she said, “no way you have Lupus.” But she made the referral anyway. I convinced her to prescribe Tramadol for me one more time.
I was in the process of changing jobs, after almost 4 years at Modus. I was about to join Sencha. I told my new boss at Sencha about the Lupus diagnosis before I was offered the job. So they knew I wasn’t 100% healthy.
My first week with Sencha, they scheduled an off-site meeting in Florida and I went. I was in agony the whole time. I went to the meetings, and while people in their free time were going to the beach and watching Space-X launches, I was in my hotel room in a Tramadol daze, just trying to make it through the rest of the day.
I went to see a highly regarded, nationwide, rheumatologist in the San Diego area. Initially, they didn’t want to schedule an appointment for weeks, but when they learned how bad I was suffering, they squeezed me in much earlier. I was able to schedule it for the day after I got back from the off site in Florida.
When I got into the doctor’s office, he took one look at me and said, “no way you have Lupus. I’m 100% sure you have rheumatoid arthritis.” I had scabs all over my legs and he examined my hands which were swollen about 3x their normal size. He ordered a battery of tests and put me on a big dose of prednisone and more tramadol to tide me over until we got the results.
A couple weeks later, I went back to him and he said, “you do have Lupus.” He put me on a regimen of medications that is typical for treating Lupus and I did get better after a few days.
The reason the two doctors didn’t believe I had Lupus is that the disease almost exclusively affects women, especially women under age 30, and even more specifically women of color. I was a white male aged 55 or 56 when diagnosed. It’s not extremely rare, but it’s also not common.
Once you have Lupus, you have it for life. It does appear to lessen significantly or almost go away altogether. This is called “remission.” It took me about 18 months to go from full blown Lupus flare to in remission enough to do most things “normal” people do in their days. It was not a straight line kind of thing – some days I felt much worse and some days I felt better than baseline.
If you’re lucky, you have only minimal symptoms while in remission. I do suffer from a few Lupus symptoms, though: sudden fatigue, brain fog, arthritis, hair loss, skin rash…
I ended up working for Sencha for almost 2 years, until they were acquired and let almost the entire engineering staff go. I returned to Modus Create, where I hope to remain until I retire.
That’s my story about how I ended up with Lupus. Now I want to discuss how I manage living with it and work; about how I was able to be productive at Sencha; about how I was able to return to Modus in spite of the limitations the disease puts on me.
Living and Working with Lupus
A big part of making it day to day, and having a good time, is to take my prescribed medications, religiously. I am on a drug called Plaquenil, an anti-malarial drug that they discovered also minimizes Lupus symptoms and makes the time between flares longer (extends periods of remission). I am still on Tramadol for the arthritis I still have in most of my joints in my arms and feet. I still take a low dose of Prednisone, that lowers my immune system so it doesn’t attack my good cells with such ferocity. On Fridays, I take Methotrexate, a chemotherapy drug that also lowers the immune system; it has some unpleasant side effects that last as long as 3 days before tapering off. I take a long acting Tramadol at bedtime so I can at least try to sleep through the night.
One thing about Lupus Arthritis is that the less I move around, the more stiff and sore I get. I sometimes wake up in the middle of the night and can barely bend my fingers and my feet and toes are similarly stiff so it makes walking difficult. Same thing when I wake up. Same thing if I just sit on the couch and binge watch some TV show on Netflix for a few hours. The pain and stiffness does get much better after a half hour of moving around in the mornings, and for the most part I function just fine.
Due to the drugs I take that lower my immune system, I am susceptible to infection and viruses that my body has a tough time fighting. It’s not uncommon for people on these drugs to end up with pneumonia from a simple cold or flu. For this reason, I strongly prefer not to travel, except maybe 2-3 hours by car. Being enclosed in a tin can of an airplane with people from who-knows-where and carrying who-knows-what germs is just tempting a bad fate. I was able to negotiate a no-travel situation with Sencha, and an agreement with Modus Create that I wouldn’t travel if I returned.
Since I am fortunate to be able to work remote, I have all the windows in my house shuttered and closed so I am in the dark (away from sunlight) almost all the time. This probably has a huge effect on how good I feel most of the time.
I continue to walk at least 3 miles a day, most days. I drive to the gym which is only a mile away and walk on the indoor track for an hour, sometimes 2. If I am really feeling good, I will walk outside in the full sun for 1-2 hours, and suffer what comes. What comes is usually what are like hot flashes or fatigue. But the more I move while out in the sun, the longer I can stay out without really regretting it.
I live in a community with 2 golf courses. When we bought the house here, we intended to start playing golf again (it’s been a decade, but we played a lot before). Lupus pretty much nixed that idea, but at some point I think I will be in good enough shape to try. In the meantime, I recently started playing softball 2 or 3 days a week. Some weeks I regret it, but mostly I think it helps keep in good shape.
Being in good shape almost certainly keeps my symptoms from being much worse than they otherwise would be. If I weren’t walking all those 14 minute/30 second miles before the diagnosis, I don’t know if I would have made it the 4 months.
Setting Expectations
I choose not to hide my situation from anyone where I work, and I’m happy to talk about it with anyone who’s interested. I am not looking for sympathy! I take the Methotrexate on Fridays and it is sometimes mood altering – enough that I might end up being rude to one of my co-workers. So I try not to post too much on our Slack channels on those days where the drug has a particularly strong effect. I cleared this with my supervisor before putting this plan into action.
At Sencha, my brain fog was sometimes an interesting challenge. Some of the variable names in the framework are similar and I’d confuse two of them – even though I am very familiar with the code base and have a decade of experience with it. We had code reviews that caught these things, and all my teammates were awesome and understanding about it. My code was otherwise perfect (of course!). Brain fog also makes me forget a common word (nouns) or name of someone I am around a lot – these are “on the tip of my tongue” and it’s annoying when it happens. It happens out of the blue, and worse when I’m sleepy/tired.
Fatigue is common among about 80% of all Lupus sufferers. Everyone is different, though, and “fatigue” isn’t a very good technical term. For me, fatigue is a sudden feeling of wanting to sit and not move at all for a while, or to take a nap (no, it’s not from being old!). It also exhibits itself when I cook, sometimes, where picking up a pan from the stove is a heavy lift or stirring something in a pan tires me out after about 30 seconds. It can be so overwhelming that sitting and working is near impossible. Working from home, I can (and do) go lay down, or sit on the couch and not move at all, until the fatigue passes. I still manage to work well over 40 hours a week. If I can read up on technology related to my current project, on my iPad, while resting up, that’s a good use of the time.
Stress is a driver of the severity of Lupus symptoms (and other chronic diseases). I speak up if I’m being put in a situation of unnecessary stress, and my employers have been awesome and willing to facilitate a better situation. It’s worked for 3 years and I’ve been very productive.
As part of my stress reduction effort, we downscaled our living situation so the pressure of making bigger mortgage payments and property taxes and other monthly/weekly/daily expenses are reduced. This allowed me to turn down stressful job offers that have impressive salaries and benefits in exchange for a less stressful situation but lower income. There is a happy balance, and I seem to have found it.
I get my blood tested and see the rheumatologist every 3 months. I have had a couple of red flag results in those tests. I share the results immediately with my employer, so there is no element of surprise if my status takes a change for the worse. Most recently, the test showed involvement with my kidneys, and that is just downright scary.
I stay informed. I read a lot of Lupus related content from WebMD, Cleveland Clinic, Mayo Clinic, Johns Hopkins, and so on. There are sites dedicated to Lupus and raising awareness of it. There are message boards and Reddits dedicated to Lupus where I sometimes go to get support from fellow sufferers. I share what I know with my employer when it’s relevant to anything going on (like those blood test results).
I learned a valuable lesson many years ago, when I knew I was the smartest engineer in the room (yeah, right!). I had an idea for a feature to add to a product my team was working on. It would take less than 5 minutes of time, and provide such a huge benefit to those who install the software. The team leader nixed the idea and I stewed about it for a few minutes. Then I realized it’s his call, and tomorrow would be a good day regardless. The lesson is that you don’t need to fight many or any battles over technology decisions. Our job as engineers is to make things work, and we can regardless of a decision or decisions we don’t agree with. This also leads to less stress!
Health insurance is a really big deal. Most of you probably are in great health and maybe need a checkup each year, or lady doctor visits for your wives (or daughters). Paying for that out of pocket wouldn’t kill you. But if you get something like Lupus, all the medications and lab tests and doctor visits add up to a lot of money. At Sencha, we were given a choice of plans that the company paid a good part of and the rest was taken from our paychecks. Choosing a plan that covered my needs did lower my paycheck, but I ended up saving in the end. Modus Create is incredibly generous and pays for insurance entirely, but we don’t get much in the way of choices. Pay attention to your employer’s offerings and take advantage of the insurance.
If you have friends at work, they might be a decent part of your support system. Just having someone to vent about how you’re affected some days is therapeutic. If you have a spouse, friends outside work, or family that can be part of your support system, take advantage of them.
A big deal about Lupus, and likely many other diseases, is that you might look perfectly fine on the outside to people over video conferences or even in person, but you feel like crap inside. People might think you’re perfectly fine, and it can be frustrating if they don’t believe you. This hasn’t happened to me directly, but it has to people I know who have Lupus, and even with their doctors. One of the most important things to keep in mind is that your doctor works for you. If you don’t like them or what they do, go find another.
I happen to be very happy with my rheumatologist. I’ve been seeing her for almost 3 years and she listens patiently to my concerns and complaints during each visit. I actually use the notes application on my iPhone to jot down things I want to discuss during my visit. I might edit that note on 30 of the 90 days between visits. More recently, I’ve just started showing the classic butterfly rash on my cheeks and nose, so I took selfies with the camera and pasted pictures of it into the note.
They don’t know what causes Lupus. They don’t know of any environmental or dietary cause, in particular. However, I did look for more natural treatments, like mega doses of fish oil, that reportedly help with Lupus. I have been on the Ketogenic diet since 2013, and it is known to boost energy and reduce inflammation. Diet can’t hurt, but it’s not a guaranteed cure.
Measuring Success
It is a subjective measure to decide what success is. For me, it’s being productive while maintaining a good work/life balance and keeping the disease in check.
I’ve actually had my 2nd flare, but it’s been much lesser than the first one. That’s a success, though I have 2 main fears: 1) having another serious flare, and 2) having the disease go after my internal organs. So far so good on those two. Success.
At my last visit to the rheumatologist, she remarked to me last visit that if she hadn’t known me for all this time, seen the early lab results, and heard about how I’ve managed my symptoms and how the medications have worked, that she would look at my blood test and think I didn’t even have Lupus. It’s not that I don’t have it – once you have it, you have it for life. I had multiple blood tests with positive Lupus indications over a period of weeks.
What all this means is that what I’m doing is working. The drugs make the Lupus markers in the blood tests appear normal. The exercise and diet likely have some effect. The longer I can go without having a severe flare like my first one, the better! I call this a success so far.
Setting expectations and living up to my commitments at work and being able to work, without vacation even, is another measure of success.
Lupus can be a disabling disease. That is, you can qualify for long-term public disability assistance, if your fatigue is constant, you can’t stand on your feet all day or lift things (etc.). Personally, I don’t think that would be much of a way to live. Plus I enjoy my job and the work too much to even try. So continuing to work and being productive is that much more a measure of success.
I can look back at the projects I’ve worked on the past 3 years, while suffering from Lupus, and see that I’ve built some really good things. I made much of a “3D” game for a credit card sized handheld game machine that we (Modus Create) gave away to our friends, family, and customers. I had over 200 pull requests merged at Sencha, which is no small feat. I also developed a slick (but custom) home automation system for my home. I’m working on some unnamed project for the company that is really taking shape. All measures of success.
Conclusion
If you’ve read this far, I hope it’s not because you suffer from some chronic disease like Lupus. I wouldn’t wish it on anyone. If you are interested in how to cope, or how to manage people like me who do have these issues, then I hope I gave you some worthwhile insights.
