It’s been a wild ride working from home with Systemic Lupus Erythematosus (SLE). We (my husband and I) hoped it would get easier in 2022. Initially, things started out great, but…SLE is full of surprises. Here’s an update…
What Is Systemic Lupus Erythematosus (SLE)?
Quickly, for those that don’t know, systemic lupus erythematosus (SLE) is an autoimmune disorder with no cure. It has lots of nicknames, including the great pretender and the disease of 1,000 faces. This is because it has multiple symptoms that can make those who are eventually diagnosed with as well as medical professionals think it is anything except SLE.
While it can, for some people, have a genetic component, it isn’t something you can catch from someone who has it. SLE is the most common form of lupus. Some (not all) of the most common symptoms include:
- Butterfly rash (a symptom I rarely get)
- Severe fatigue (this is my life now)
- Joint pain (also my life now, specifically, my upper spine and into my neck as well as my knees and hips)
- Joint swelling (my right knee often swells to about three times the size of my left knee…regardless of whether it hurts)
- Hair loss (a symptom I do not have)
- Anemia (a symptom I do not have)
- Problems with blood clotting (a symptom I do not have)
- Raynaud’s phenomenon (a problem I do not have)
- Weird-ass little ridges in the fingernails (I recently found out about…deep ones…this happens on my thumbs just like you’ll see on the link)
- It can attack your organs (thankfully, my organs are good)
- It can attack your eyes (guess who just got over anterior uveitis? ME!)
Anyway, I was tested initially in the early 2000s and found to be positive through blood work (byyyyy the wayyyyy…it is so much easier now to just go to a lab and get blood work without a doctor. If you live near a Quest, you can just go order your own labs. It’s not as expensive as you think if you pay cash…except for a vitamin D deficiency test. I think that was the most expensive I paid for round one of testing. So, including the ANA, C-reactive protein, vitamin D, and probably 12 other tests ordered by my doctor, including a UA and some other kidney and liver function tests, I think I paid $300 cash. The ANA test was $35. I think the vitamin D test was $100…but you need that test, too…often, people with SLE are vitamin D deficient – I am no exception). I recently had another test done to determine if SLE is progressing or if I also have Sjogren’s on top of SLE. That cost me an extra $300…but it needed to be done.
Where I’m at in My SLE Journey
So, as far as the SLE is concerned, I have rogue inflammation cells (in my eyes and in the lymph nodes in my head….you know how you watch things like 600-lb Life and people talk about having lymphedema in their legs and arms and stomach? I have it in my neck and head on the right side. For my head, it is behind my ear and there’s literally NOTHING I can do about it!). As my cousin loves to say to me, no one can kick my ass but me.
Annnddd she’s right, ha. I don’t like to be told what to do…or what I can’t do. So usually I keep pushing until I literally cannot do anything. My 21 year old son came and spray painted a foldable cane for me in a nice, sparkly color-changing paint…so now I can go for a walk at the zoo or beat someone’s ass in style. You know, it’s whatever.
The good news is all of my organs are in amazing shape. Dare I say that they are black market worthy?
I mean, I can live with one kidney, right? Probably not the best idea to think about selling a kidney since, you know lupus.
Still a funny joke…but most people (in person) cringe when I say that. So I enjoy saying it as often as possible.
My biggest issues are the rogue inflammation cells threatening my vision (because there’s no telling if they will attack my eyes again), the non-stop headaches because of my vision (I have to constantly wear special glasses), and the on-going pain in my back, hips, and knees. And the never-ending fatigue.
But…unfortunately, my doctor was very concerned when the eye thing popped up. Apparently, that was a very serious deal (not just the uveitis, but the fact it happened). So, that’s why the second expensive round of blood testing occurred. We have to figure out if the SLE is advancing or if it’s Sjogren’s.
After I get my eyes rechecked (first I see my main doctor and then drop another $200 at the eye dr…and hope I don’t need another round of eye drops – those were NO fun!), the decision will likely need to be made about whether I have to go on immunosuppressive therapy.
Working from Home with Systemic Lupus Erythematosus (SLE)
So, I’ve worked from home now for eight years. In fact, January 13 was my eighth anniversary of this glittery pizza train wreck of fun. And I mean that. By and large, this has been fun.
At first, I had other reasons I worked from home. You can read more about those here. I mean, I had health issues then…SLE was dormant (it seemed). I had some heart issues (WPW) I dealt with, but that was congenital. I’ve not had issues with that in forever. In fact, now all I have is run-of-the-mill tachycardia. My resting heart rate is generally between 95 and 130. My best friend is the opposite. She has bradycardia. Her resting heart rate is noted between 30 and 50! I’ve always found that funny. One of the few spots where we are total opposites.
Prior to the last couple of years, I was a 5 am gal. Naturally…no need for an alarm (but I was also a chronic insomniac). It didn’t matter what time I managed to go to sleep. Unless I had a serious migraine, I was up super early. I’d work out early (or schedule it for around 11 am if I felt super sore). I’d drink warm lemon water (I am diagnosed as cold intolerant). I’d take a few minutes to wake up. I’d start my workday and get everything finished by about 2 pm.
After I recovered from COVID, I didn’t feel recovered. At all. We learned I was in a flare. I still sleep up to 12 hours a day. I take three meds (one is migraine prevention, one is for anxiety, and the other is a prescription NSAID for inflammation…it works okay). I also take:
- Vitamin D
- Vitamin B
- Vitamin C
- Tart cherry
- And I drink my damn greens!
I eat a low inflammation diet and I have for years. Eating right got me out of cardiology. It got my blood pressure down. In short, I do everything “right.” No, this isn’t a lecture. I am just telling you what my life is currently like.
My exercise is AsanaRebel between one and three times a day. Each session is between 5 – 25 minutes. Lately, it’s been closer to five minutes each.
Recently, I’ve woken up closer to 7:30 am unless I’ve had a screeching migraine. I’ve had quite a few because of uveitis over the last few weeks. It can take me up to two hours to get moving. But my calls roll through to my voicemail which is transcribed and sent to email.
I can answer email from my desktop which is near the loveseat. My laptop is close to the loveseat. So I can either get it myself or my husband will help. He’s an absolute prince charming.
If I am feeling amazing, I will do the dishes, clean up the bathroom a little, start a load of laundry (shout out to FlyLady), and get dressed. If it’s nice, I’ll sit outside (when it is warm enough) to work. My special glasses make it easy for me to do that.
I don’t eat until I get hungry. Because I’ve had surgery that removed part of my intestines (thanks, Crohn’s), I know better. When I get hungry, lately, I’ll do something simple. We keep frozen veggies on hand instead of fresh. I loved cooking fresh, but I don’t have the energy. We keep some easy, fast vegetarian and vegan things in the freezer for me to choose from.
Related: Easy to Make at Home Meals
In the late afternoons/evenings/downtime, I like to work on my various crafty projects. My husband printed off my crochet projects that I’m working on. One is a Tiger King knock off I bought from Etsy for my very sweet friend Edna. Another is a pair of shark socks for my darling husband. I have a 5D diamond art project. I have a cross stitch I’m working on but it seems I’ve missplaced some of the floss…my husband plans to help me find it. Good because that stuff is NOT cheap – ha!
Some nights I go to bed as early as 7 pm because I am that tired.
But during the day while I work, I have to take a lot of breaks to rest my eyes…and my brain.
I’ve had to switch how I keep track of my tasks. It used to be, I could just write down little things…like the name of a client and I’d remember what I needed to do. Not anymore. I have to create an entire task list with details. So, I switched to ClickUp.
The Overarching Lesson? Learning to Be Flexible
I love what I do. I love my business. I am proud of what I’ve accomplished. I look forward to doing more. However, I also have to learn to take care of myself…and that isn’t easy because I don’t like being told (even by my own body) that I can’t do certain things. So I’m learning to be flexible.
If you have an autoimmune disease, I’m curious to know what you’ve learned.