A window into life with severe autoimmune diseases, like rheumatoid arthritis and lupus

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I want to give you a window into my world.  I know we all have problems, but these are my problems,  right now.

I have several diseases, too many to list, and you would likely not have heard of most of them anyway.  The most common ones are lupus and RA.  Autoimmunity is taking my body apart slowly.

Which is far better than cancer taking my body apart quickly and completely, and I’m very grateful for that.  But I am in the doctors’ (yes that apostrophe is in the right place, multiple doctors) too hard basket.  I don’t even see doctors when I’m sick. I know as much about my diseases and how to treat them as they do. Sometimes more. So there’s little point sitting in a waiting room for an hour to have my doctor sympathise and lay out the options that I already understand, and tell me it’s my decision.

A few weeks ago I had a minor procedure. Because I am immune suppressed from all the medications required to treat my autoimmune diseases, even a minor procedure can turn major. I developed a post op infection.  That means strong antibiotics. Which means stopping all my immune suppressing medications, so that my immune system can strengthen, and in turn my body can fight off the infection.

Stopping all my medications also allows my immune system to start attacking my joints and internal organs again, full force.  So I went into a huge full body flare.  Agony in every joint. And I don’t use the term ‘agony’ lightly.  And I feel sick.  Very sick.  Nauseous, weak, dizzy.  Exhausted.  Very, very sick.

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So I increased my dose of narcotic pain killers, which I take every day.  And still, all I can do is lie on the couch.  Making it to the bathroom is an achievement.  I treat the worst symptom – pain – and wait it out.  Wait for the antibiotics to clear the infection, so I can start my medications and live again.

Now here’s the hard part. I am not getting any better.  I have a fever. I am really sick, aside from being in pain.

So…is it the infection causing the fever and illness?  Or is it the rhupus (combination of lupus and rheumatoid arthritis) that is causing the current acute illness?

So if it’s the disease process, I need to restart my medications.

If it’s the infection, that’s the last thing I need to do. I need stronger antibiotics.

So I made a decision and I have restarted my immune supressing medications, but they take a few weeks to work.  Usually when this happens I need to take high doses of prednisone to get back up on my feet.  Literally, back on my feet.  I have been mostly bedridden for quite a while now.  This level of pain, sustained,  constant and severe can really mess with your head. Your sanity. Your ability to make good decisions.

Prednisone is a corticosteroid. A powerful anti-inflammatory drug, that will tame the rampant inflammation in my body and allow me to recover.  It takes affect quickly.  I usually feel improvement within 24 hours.  And significantly better (though not ‘normal’) within 3 days.

The problem is, it’s also a powerful immune suppressant.

And I still have a fever.  So if the fever is from the infection, I’ll be making my condition worse.  I won’t be able to fight off the infection.  I’ll get sicker.

But I’m betting that the fever is from the disease. The full body inflammation attacking everything from my joints to my kidneys to my uterus.  No part of my body is off limits.

So. Will prednisone rescue me? Or will it make me sicker.

These are the choices I have to make. Doctors won’t make them. They leave it up to me.  I have a pharmacy of medications.  And more experience with my body than they do.

But what if I’m wrong?  What if the 30mg of prednisone I just took makes me even sicker?  What if the infection spreads and I get septic?  Infections like this in immune suppressed patients can cause death.

So what would you do?

Red pill or the blue pill.

These are the kind of decisions I have to make. This is a window into my world.

It’s not just arthritis.

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