Wednesday May 31, 2023

Working from Home & Lupus

So! We have the answer on why I have not recovered since I caught COVID last December. Drum roll please (not important since the spoiler is in the headline)!

After lab testing and visits to the doctor (same shit I had done years ago and then, you know, one doctor almost a decade ago refused to look at the medical records and only looked at my joints and said, “Oh, yes, you have arthritis in every joint except two…but not lupus.”), we learned that I have SLE, systemic lupus. The good news is that none of my organs are impacted, only my joints. I am very tired, despite the fact that my B12 levels are through the roof according to the blood tests. I am Vitamin D deficient (not the kind in my husband’s pants, ya pervs…sons, if you’re reading this…sorry!).

As you all know, I am a champion of working from home for many reasons: job security when someone is a survivor of domestic violence, a way to supplement or replace an income as a parent, and for any reason that a traditional job just doesn’t work. So, to me, an autoimmune disorder is another reason why work from home life is the best life. Yet, as someone who lives with it and who is in the middle of a flare that is just killer, I thought I should share with you some of my best tips (so far) for working from home with systemic lupus (in a flare).

I Tightened Up My Supplements

It’s no secret that three years back when I turned 40 that I talked to my then-cardiologist to change my diet, introduced exercise, and got my cardiologist’s approval to start specific supplements (minerals, amino acids, and vitamins) for heart health. So, I did my research…and by this, I mean I pulled scientific and medical research on treating SLE-related fatigue with certain vitamins.

My other interest was researching what I could do to help strengthen my immune system because it is shot right now because I am in an active flare. Again, my research was based on SLE and medical research. This was not just random blog posts.

I am not listing my supplements that I am taking because I don’t want people who come across this to think they will be magically healed from SLE by taking supplements. It doesn’t work that way. There is no cure for systemic lupus, discoid lupus, lupus nephritis, or drug-induced lupus.

And, yes, my treating physician knows and approves of what I am taking.

I Reintroduced Daily Workouts

There’s a lot of information out there that states people like me who have lupus should only do low-impact workouts. Sure, when my knees demand it or my energy level is low…absolutely. I had quite a while (July through most of September, to be exact) where I couldn’t even get off the couch or out of bed. I don’t say that lightly.

I read a study on the NIH website that stated cardio workouts are better for improving energy (over time) in lupus patients than even diet change (but diet change is important for many reasons, specifically heart health because many lupus patients are at a higher risk of both diabetes and heart disease). Having already gone through cardiology twice, I am not about that life again.

I’ve even signed up for a virtual fun run. You can sign up for any of them you’d like and use coupon code THEROBINBULL to save 15%. I am participating in the Day of the Dead virtual 5K. I used to love 5Ks when my adult children were little. The last one I participated in (running it, no less!) was Glo Run about five years ago. But now with my immune system, virtual is best…and I will probably walk.

I Listen to My Body About Working From Home

What does this mean, listening to my body when working from home? It means that if I can only do a five or ten minute workout, that’s what I do. It means that if I am working on a project and I am hit with that bone crushing fatigue (which now hits around 3 pm), I stop and lie down…if necessary, I take a nap. The problem with that nap life is I might sleep until the next day…but it is what it is at this point.

I have a couple of different lap desks so I’ve also learned that I can continue to work in many instances if I just lie down and work using the lap desk.

But…it’s all about learning to listen to my body. Working from home allows me to work around my own needs. For that, I am grateful.

Hot Baths Are My Friend

My knees, shoulders, back, hips, elbows, wrists, and hands are very appreciative of hot baths. Because I work from home, I can take one whenever I need or want to take one. I don’t have to wait until I get home from work. There’s no commute.

I Take It Day by Day

Because taking it day by day right now is all I can. I started feeling quite a bit better until I took the flu vaccine. Now I feel blah…but hopefully it won’t last!

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