I didn’t mean to drop off the face of this blog. My disappearance from my life— not just my blog—has verged on science fiction. It was as if one minute I was walking down Normal Street, holding my third-grader’s hand and chatting to my husband. And the next, some powerful and alien force wielded a tractor beam, scooped me out of my shoes and my daily life and plunked me someplace where I can’t get back to my old world.
Aliens didn’t abduct me, even if it feels that way. I did spend time getting tested; I did have mysterious procedures performed on me; and I really did get forced out of my own life—just not by little green men. It all happened in Chronic Town, and the culprit was sarcoidosis.
Here’s a brief synopsis of my sorry saga. Jay and I caught a nasty stomach flu on the way home from a cross-country family vacation in July. When I’d nearly gotten my bearings back, I learned I had to have surgery after an ultrasound showed a possibly malignant growth in my uterus. Because of the panoply of immune-suppressants I take to manage my sarcoidosis, my doctor insisted on doing the surgery immediately. The procedure went uneventfully, and the growth was not cancer.
But before I could celebrate this good news, I developed a post-operative systemic infection (those immune-suppressants again). The infection, or maybe the stress of the surgery, or maybe both, kicked off a massive flare-up of neurosarcoidosis symptoms. I finally had to go back to the hospital—this time as an inpatient—when the infection would not respond to oral antibiotics and I could no longer manage my obliterating head pain and vertigo at home. In the hospital, I got lots of IV antibiotics and pain medicine, and even more IV prednisone. I improved enough to come home a few days ago. Still, I had to spend my birthday in the hospital, which just feels like overkill.
There is a bright side to every story. I made it home in time to spend the last two days of Andrew’s summer vacation with him. Also, although I did have to contend with 1,000 mg. of IV prednisone, I did not have to endure the kinds of probes alien abductees recollect. At least when chronic illness disappears you for a few weeks, you can count on certain dignities remaining intact. That said, I am exhausted and depressed by how quickly my life evaporated. I still have an infection. The problems caused by the sarcoidosis on my optic nerve continue to plague me. I can’t see out of my left eye, and my vision is blipping out entirely a few times a day. And I am really, really, really tired of having an astronomical headache (for three weeks running) and sea-sick levels of vertigo. I miss my friends. I miss working and thinking about things other than pain and private body parts.
What needs to happen now is rebuilding. I’ve got to regain stamina for daily life, after being flat on my back for a couple of weeks. I’ve got to reconnect with the friends I miss, and the routines I crave. I’ve got to face my book project after losing all momentum. I have approximately 900 phone calls to return, and follow-up with nearly as many doctors. I’ve an infection to finally whip and pain to manage. I’ve got a son who has missed his Mom and a husband who has been managing everything around here.
I don’t think any of us truly trust that I’ll be here tomorrow or the day after— that the green-skinned, goggle-eyed aliens of illness won’t whisk me off and then warehouse me just out of the orbit of everything I know. I can’t know for sure. I only know that I’m here, now.
Have you ever felt like you’ve been abducted you from your life? How did you find your way back to yourself?