Raynaud's flare up when the temperature is cold at the office. Causes pain and numbness typing.
Lupus
I have the deadly disease known as Lupus. The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE). True to its name, SLE is a systemic condition throughout the body. In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.
So What Exactly Is Lupus?
In short and perhaps unscientific terms, SLE is my own immune system betraying me and deciding to wage war upon various systems in my body. My immune system incorrectly targets these systems as enemies and marks them as invaders. Then it targets my cells, tissues, and organs in those systems for destruction. This destruction begins with inflammation and its other biochemical weapons and agents to kill cells and shutdown organs. My Lupus likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory, nervous, digestive, and musculoskeletal systems.
Coping At Work
I'm not going to lie to you. It can be extremely difficult and lonely to cope at work. That's whether you choose to keep your illness secret (tried that my last company, told no more than maybe 10 people) or tell others directly or via online advocacy (current company).
Biggest reason? No one cares. Harsh, but true.
Everyone's got something or something going on. And the burden we can all handle is different.
One coworker might be fighting Stage 4 Liver Cancer.
Another coworker may have stubbed a toe at home.
And the toe stubbed is stating he or she went to the Doctor, no fracture, just a contusion, and must be out for an entire week to ice it.
Meanwhile, people are rudely demanding why your coworker with Stage 4 Cancer hasn't reset his or her password. This after he or she locked themselves out of their laptop less than 30 minutes ago (true story by the way).
Try to find support groups? Maybe...but its can be hard to find professional support groups or one within your own company because people are scared to reveal their illness out of fear of being passed over or viewed as unreliable.
Work is work. It has its own schedule and its own performance expectations. It doesn't bend or yield to your illness schedule.
Neither do your colleagues. To some of them a crisis is missing the big meeting because they stayed up late getting blitzed and charging booze to their expense account. Not because they suffered a TIA on a flight about to take off and turned the plane back to the gate.
Work Schedule
Working with Lupus or any chronic illness can be extremely challenging.
Why?
Because your Lupus does what it wants, when it wants.
Lupus does not adhere to any schedules out of convenience.
Sure you can take precautions with avoiding sunlight, resting, relaxing, reducing stress, taking your medications as prescribed, etc.
But with Lupus you are fighting a battle with your own body at the cellular level.
Your immune system is targeting your own organs, tissues, and cells for destruction.
You even have autoantibodies attacking your own DNA.
So relaxing on a Sunday afternoon covered in sun proof clothing, doing yoga, with a stress candle burning and some Kenny G playing in the background might help...maybe...but your disease doesn't really care.
When your alarm goes off Monday morning, you can be a pain tortured and disabled zombie even after the most relaxing Sunday of your life.
A Week In The "Lupus Life" Of
I work full time as a Product Manager at a software company. I've been fortunate we've worked remotely the past year due to the COVID-19 pandemic. Fortunate because not only am I immunocompromised from my Lupus medications, but I was given and accepted additional duties the past 10 months after some staff reductions. Those additional duties have led to 10, 12, and occasionally 14 hour days to keep pace. After some poor lab results and a nasty flare that sent me to the Emergency Room in January, I've tried my best to put boundaries around my hours. But that in iteself is subject to how much work to do for what deadlines.
So here is a recent real life week for a full time employee and manager with Lupus, who works remotely doing mostly sedentary office work using a computer. Not your standard week, but a week that required self-care, a procedure, and multiple doctor visits.
Photo by Marcelo Leal on Unsplash
Monday
- Scheduled sick day for an Outpatient Procedure at a local Hospital.
- Routine Endoscopy checking for inflammation of the esophagus, stomach, or beginning of small intestine.
- Exam prep room is like 80 degrees, apparently the time of year where flip between heat and air conditioning needed.
- Nurse asks me why I am wearing 2 masks - 1 cloth, 1 N95. I say because I'm immunocompromised. I actually thought I was supposed to get citizen of the month for doing that, but she seems unimpressed by my double layer.
- IV feels like the nurse is running 220 wiring into my hand, she apologizes stating they insist on the wide IV catheter.
- From the heat, IV, and not eating for the past 12 hours, I feel nausea, start sweating profusely, and start to black out from vasovagal response. Nurse jokes she forgot to remind me to breathe, opens the door to let in cool air, and gives me a cool cloth. That was fun.
- Anesthesiologist comes in for evaluation. I remind him that he handled my surgery anesthesia last year and rated me a 4 out of 4 on his high risk scale. He states he remembers now.
- Next is anesthesia dreamland. I'm being awakened what feels like seconds later and checked for discharge. Dr. tells me it appears I'm not digesting my food. Couldn't complete the exam. When I insist I followed the prep instructions and even stopped eating sooner, we rule out use of narcotics, he then says most likely Gastroparesis. He also took biopsies of Esophagus. Anesthesiologist comes by and asks how did it go? I tell him. He says sounds like Gastroparesis.
- My wife is called to come pick me up.
- By the time I get home, I'm exhausted. Check some work messages and emails and then lay down. I'm out asleep in no time.
- Sleep most of the afternoon.
- Read about Gastroparesis in the evening. Symptoms match how I've been feeling, what triggered the referral to the Gastroenterologist. Then again could be Lupus symptoms, or both, who really knows? Answer: no one can.
- Fell asleep again early evening. Completely wiped out. Struggle to stand out of bed to even get water.
- Tell my wife that sometimes it feels like I am a very elderly person who is more and more limited by a body that's shutting down and is slowly waiting to die. Overly dramatic? Probably. How I actually feel many days? Yes.
Photo by Isaac Quesada on Unsplash
Tuesday
- I wake expecting to be energized form all the rest. I'm not. It's worse. Feel like I'm drugged. I'm woozy standing up.
- I have pain in most joints. My knees feel like someone drove an ice pick into each one while I was sleeping.
- My neck, back, and left shoulder hurt badly. Was the side they had me lay on for the procedure. Cause? Who knows, something new hurts everyday.
- Feel hot and cold, sweating. Withdrawal symptoms from missing one day's doses of nerve suppressant medication yesterday? Again...who knows.
- I call out sick from work to my supervisor and tell my team. I'm back asleep minutes afterward.
- Get up 3 hours later to eat something to take morning prescriptions. I eat maybe half my precautionary low residue and liquid food and head back to bed.
- Sleep the rest of the morning and most of the afternoon, only the occasional text causing me to wake up.
- A colleague kindly and sincerely says "get rest and some Netflix time in"...I appreciate the comment, but also makes me think how my "sick" days differ from those of others. Doing anything other than sleeping is not a thought in my mind. I barely have energy to make it 20 feet walking.
- I sleep maybe 18 hours total.
Wednesday
- Repeat of Tuesday minus the "withdrawal symptoms" and sincere Netflix comment.
- I eat a little more and drink a liquid meal replacement, again precautionary on the Gastroparesis hypothesis. I have to say though the lower residue and liquid diet seems to be eliminating symptoms...I think...either that or placebo effect...either way is an improvement.
- Have to cancel an afternoon Dental Appointment for a crown. They tell me it coincidence, but whenever I have to take increased dosages of prednisone for period, I break a tooth. 3 times so far. Once again...who knows?
- I sleep maybe 16 hours total.
Thursday
- Back to work, up early and ready to go. I feel more energy than I have in months, maybe years. Both my superiors kindly check on me and ask how I am. I sincerely and immensely appreciate that and respect them even more for the gesture.
- Lots of meetings, lots of emails. Have to regrettably cancel 2 meetings as I hammered with emails and repeat emails about priorities and emergencies. Note: I'm not a heart surgeon, I don't make heart surgery robots, don't make heart surgery software, don't make heart surgery scheduling software. So many "5 repeat email 5 alarm" emergencies are something that someone could find if they looked in our Help documentation or when we spoke of the same exact thing 3 months ago.
- By 4-5 PM I'm depleted again. Requests of where is this? Why isn't this posted yet? Where is this memo? And not my own supervisors! From other people in other departments.
- More work to do this day with deadlines, but I have to sheepishly plead out sick last 3 days. Don't know what other choice I have. Most people I work with know I have Lupus, either I told them or from my advocacy, but don't really care. And why should they? They have their own priority life issues to deal with.
My hand, day 4 after my 220 wiring job. Pairs nicely with some towels from Target.
Friday
- Back to work, up early and ready to go. More energy again than usual, but not like the day before.
- Half day work, half day sick time for a Neurologist referral appointment.
- Meetings where I present. Coupled with chasing down things people promised to deliver or updates from meetings they missed. I try hard to make jokes in meetings to entertain others, myself, but mostly to hide my constant pain like some kind of sad Circus Clown.
- Neurologist office insisted on an "in person visit" when I requested tele-health. Takes me an unexpected 90 minutes to get there due to some midday traffic light related slowdowns. They are blowing up my phone with calls and texts because I'm 20 minutes late.
- While in the waiting room and "out of office", more of the same: Where is this? Why isn't this posted yet? Where is this memo? Can we have an unscheduled meeting now? Your calendar shows out of office, are you really away? Again...from other departments.
- Neurologist looks like Jake Gyllenhal circa "Spiderman: Far From Home" in a KN95 mask. His bedside manner is like Tommy Lee Jones in "Men In Black". I nickname him "Agent Mysterio" in my mind to remember him.
- After telling my tale of SLE woe with some of nervous system related pain details and 15 minutes of "why are you here?" Oh yeah...referral from Rheumatologist...hitting me with the reflex hammers, tuning forks, and other medieval tickle the bottom of your foot devices, he says Short Fiber Neuropathy.
- Ok...what? So he explains. Lupus is probably cause. Nothing to do. Treating the Lupus is already happening. Will let the Rheumatologist know.
- Yay...2 more diagnosis hypotheses in one week - I better add to my iPhone Emergency list of conditions.
Why The 5 Day Journal?
So why the journal above? To relay how Lupus and its potential comorbidities never take a vacation. And although I took sick time, my work never stops in the background. The pile of work and wants is still there when I log back on the next day. And if anything, it's even higher.
Plus with Lupus and chronic illnesses you are dealing with stuff people can't possible imagine.
What if you are completely healthy and were just told you most likely have Gastroparesis? And now you better change your entire diet. Plus all the advice of eating healthy fruits and vegetables you received was possibly making you sicker...for months...maybe years.
Or you are completely healthy and you were just told you have Short Fiber Peripheral Neuropathy? Causing you sporadic and spontaneous sharp pains throughout the day. Irreversible by the way! Good luck with that.
Or what about Lupus?
When I was diagnosed a Rheumatologist put his hand on my knee and said "your blood work shows Lupus, and the disease is active right now. You are at extreme high risk for heart attack, stroke, clot, or DVT. And your history of TIAs is not a good sign." He then handed me a prescription, I set up next visit at the desk, texted my wife "I have Lupus", and went home so I could log back on for work. I probably could have called out, but I was in shock. I went to work the next day too...and the day after.
The Wolf Within Me
Lupus is currently not curable. My Rheumatologist uses the analogy that my immune system is a wild animal that we attempt to keep caged in remission with powerful and yet toxic medications. So of course given its “Lupus”, I associate a wolf as the wild animal within me. Frequently the caged wolf is still able to take a swipe at me from within the bars of cage. And many times the wolf breaks free to wreak havoc on me until medications are increased or added to suppress it again. These events occur despite me taking all my medications daily as instructed. My wolf has its own plans for me it seems. And surprisingly enough, those plans may include me becoming a better person.
Next Week - Life With Lupus: Dealing With Doctors
More "Life With Lupus" articles by this author...
- The Wolf Within Me
- When The Wolf Escapes
- Medications
- Mortality
- Perhaps I'm A Better Man...Make That Wolfman?
- The Life I Lost
- Everything Hurts
And related articles by this author...
- Working With Serious Or Deadly Illness?
- Biggest Surprise Working With Serious Illness
- Lupus And Raynaud's Disease
- No One Gives A Fork How Many Spoons I Have