Living with the Burden of Wegener’s Granulomatosis (Part 2)

How do you fight an illness that makes your own body destroy itself? This is my journal about living with a rare autoimmune disorder.

© Brian Mann

I am My Own Enemy to Fight

If cancer is a school bully that you need to stand up to, then autoimmune disorder is like your buddy who’s doing dirty things behind your back. There’s no reason for her to hurt you, but she does nasty things by tricking some of your own cells into mistakenly attacking others until you get sicker and sicker.

There’s no true enemy, no malignancy to rally against. In a way, you’re what’s wrong with you. There’s no one else to blame but you. Autoimmune disorder is just like committing suicide, killing yourself slowly but surely. And you can NEVER fully recover.

In 2012, I was diagnosed with a rare, incurable autoimmune disorder called Wegener’s Granulomatosis, which inflames the walls of the blood vessels, depriving the organs of blood and leading to the destruction of tissues and cartilage (in my case, it attacks my sinuses). I was 35 years old then.

No one knows what causes Wegener’s, which is in the same family as lupus and multiple sclerosis, or how to cure it. So, doctors treat it like a form of cancer, with a combination of steroids and chemotherapy, hoping to force the disease into a long-lasting remission. And there’s no permanent cure to it.

Still, I’m grateful that it’s not cancer. At least, I can live my life as normal, taking care of my family, working and blogging in my free time. I don’t need an oxygen tank to breathe, or a wheelchair to move around. Just a bunch of pills and routine blood test to keep me alive.

However, 2017 has got off with a rocky start for me. Just after New Year, I was down with a nasty flu that could have triggered a flare. I had sudden heavy nose bleeding. That weekend, my nose bled more than 10 times, and each time, it took ~10 minutes to stop. It was MASSIVE bleeding, and if I were to quantify it, I lost about 1/3 cup of blood each time.

What worries me most is NOT the amount of blood loss, but the LOCATION of the bleeding.

I’ve always suffer from nose bleeding due to crusting inside my nose (left side). Nasal crusting is part of the Wegener’s package. It’s just like a scab that formed on your wound when you’ve a fall. If you tear the scab, it will lead to bleeding. Nasal crusting is similar to scab, except that it’s inside the nose and persistent (very irritating too!).

This time, the nose bleeding came from the back part of my right nose (not due to crusting) and the volume is heavier than before – that’s what worries me. What could it be this time?

So, I went to see an ENT specialist (again). The poor tissues lining my sinuses were badly inflamed, they were so delicate like a piece of tissue paper. Even a slight sneeze or cough will cause a rupture – that’s why it bleeds easily. He prescribed some steroid nasal sprays, and thankfully with that, my nose bleeding has stopped. But the bad news is, I’ve to increase the dosage of my immuno-suppression because Wegener’s is active again.

It’s been almost five years now, and I’ve almost given up hope that someday I could live without any immuno-suppression. Sometimes, I have fear about what lies ahead of me when I think of some possible repair surgeries that I might have to face in the future, starting with my nose reconstruction. Did I mention that I’ve slight hearing loss too?

Because the weather was good. Because the weather was bad. Because the weather was good enough, I loved every moment I spent with my loved ones (quote from hit drama “Goblin”). That alone gives me strength to face the uncertain road ahead of me.

After all, I’m my own enemy to fight.