Life With Lupus: My surprises from working with illness

TJ Wolf

Life With Lupus: My surprises from working with illness

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I've worked many years while managing a serious illness.

The biggest surprise from working with a serious illness is certainly not what I thought it would be. Maybe not what you are thinking either.

So, what are you thinking?

Let's see if you guess it. Ladies and gentlemen hold your thoughts, place your bets, and let's find out.

But first, let's meet our contestant...

I've worked many years now while managing a serious illness. I have a deadly disease called Systemic Lupus Erythematosus (SLE) with Lupus Anti-Coagulant and Lupus Anti-Phospholipid. What exactly does all that mean? In short and perhaps unscientific terms, with SLE my immune system betrays me and decides various systems in my body are invading enemies that must be destroyed. My immune system then targets my cells, tissues, and organs for destruction and begins to trigger inflammation and its other weapons to kill cells and shut down organs. Mine likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory system, nervous system, and musculoskeletal system.

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My SLE also features some collateral damage in the form of Anti-phospholipid antibody syndrome, Raynaud's Syndrome, Transient Ischemic Attacks (TIAs aka mini-strokes), seizures, heart inflammation, tachycardia, increased liver and kidney activity, Osteo-arthritis, photo-sensitivity, muscle weakness, sporadic and severe nerve pain,...oh, there's more, but at this point, you probably think I'm exaggerating.

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Picture of my actual weekly pill tray with medications planned out.TJ Wolf/TJ Wolf

Speaking of thinking I exaggerate, I take anywhere between 9 and 12 different prescription medications per day (3 of 12 are "take as needed"). Most are taken twice daily and include a maintenance chemotherapy drug, 2 nerve suppressant drugs, heart medication, an anti-malarial, corticosteroid, and of course pain killers. No anti-depressants (believe it or not, right?). Although one would be welcome after typing all this.

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And mortality?

Not sure.

I've been warned that many my age with SLE succumb to cardiovascular disease in the form of a sudden cardiac event. Also, I’ve been warned that the very medications I take must be monitored because some can cause blood cancer, liver damage, kidney damage, and retina toxicity from long-term usage.

But my Rheumatologist promised to keep me going until 90, and since it was a pinky promise, I'm all set.

Blah, blah, blah...are you done feeling sorry for yourself?

In the words of Bilbo Baggins in The Fellowship Of The Ring "Well no, and yes."

I needed to provide you some context, right?

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Plus I left out the parts about how I hobble around, struggle to stand, sit, or even sleep through the pain, struggle with my weight-related pain with exercise and corticosteroid usage, etc.

But then there's that whole perception of exaggerating things again.

So wait for it, wait for it, and...

Get to the point of the article will you?

Otherwise, this is just an advertisement for living and working with <insert name of your serious illness here>?

Ok, here goes...

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This is a big surprise for me is why...

  • can't so many others keep pace with me?
  • can't they outperform me?
  • can't they do their job well?
  • do they need or expect me to do their job for them?
  • don't they choose to adopt a mindset of no excuses?
  • can't they roll up their sleeves to get the job done and deliver on a deadline they committed to?
  • do they spend precious hours of their lives each day blaming others for their mistakes and failures?
  • are they so afraid to stand up and take responsibility?
  • do they have the benefits from so much, yet squander winning in exchange for the easy path?

Well make that surprise...so if you got one or more right, you still win.

If you got them all wrong...well, you can still make use of your health and time to win.

And if it sounds like I have a chip on my shoulder, maybe I do.

And maybe I use that chip to gain strength and courage daily.

Or maybe the questions above simply beg to be asked.

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My primary mission is to spread awareness about the disease Systemic Lupus Erythematosus (SLE) and many of its comorbidities. Given most physical activities cause me pain nowadays, I've taken on writing as a new hobby, form of therapy, and method to interact with others. You will find I also experiment with articles related to business and careers.

Atlanta, GA
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