Just diagnosed with Wegener's in August. Had my 3rd infusion treatment this week. I've always been one of those who pushes through illness...keeps going...and then suddenly I couldn't anymore. I'm a social worker. I was fatigued, depressed, feeling like I wanted to quit. Then the heat came and my body just started burning up, pain from the top of my head to the soles of my feet. My pets (2 dogs, and 2 cats) were visibly concerned about me. As I reclined on my couch they covered me. I felt almost like they were trying to take the sick away.
The drop-in clinic prescribed antibiotics for a sinus and ear infection.
The ENT the clinic referred me to gave me a big steroid shot.
I kept saying I couldn't swallow. I couldn't eat. No one seemed concerned.
I kept trying to work at my job.
Finally my tongue swelled on one side and my speech was slurred. I texted my ENT. She said get to the ER.
They thought my chiropractor had "pinched a nerve".
They did a cat scan. They were about to release me from the ER when a radiologist said they found something in my lungs.
Then they gave me the cancer speech and said they were admitting me, put an IV in my arm and took me off to a room with the promise of a biopsy.
When I got to the room the hospitalist gave me another cancer speech and said I'd have a biopsy the next day.
The next day another hospitalist put on a mask and said it could be TB, but my biopsy had been delayed another day.
Thanks for scaring me. Thanks for being so sensitive to my feelings you grab a mask to protect yourself.
My daughter and I did not believe it was cancer or TB. Never a smoker. No asbestos exposure. No family history. No travel abroad.
And it wasn't.
Eight days later. Two in intensive care with round-the-clock nurses. Finally it was Wegener's.
Thanks to my Pulmonary Doc for testing for Wegener's.
Thanks to my Rheumatologist for setting me up with treatments.
Thanks to my employer who is so far very understanding.
It is good to know...to give it a name.
Feeling so much more like myself than I did just 4 weeks ago. I'm looking forward to getting back work in a few weeks after the infusion is finished.
It is good to know there are others fighting this fight. It's a new way to live for sure. But it's a way to live. And for that I'm grateful.
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