Recovery: My first ever lupus flare. 

by Laguna Lupie

A week after our deliriously happy renewal of vows, I started feeling weak, with joint pains and a slight fever. I took to bed as I usually do, thinking this is one of my usual afternoon fevers and it will pass after a few days. I was tired from the eventful month that was April, we celebrated Anton’s ninth birthday with his yearly garage party but we also went for a weekend getaway at a country club nearby where the whole family went swimming and did bowling and basketball. It was wonderful and everybody had fun. I enjoyed bowling again, something I haven’t done since college and my husband enjoyed discovering he was good at bowling. A week after the birthday bash, we then celebrated our tenth anniversary renewal of vows, it was a small affair but was stressful in its own happy way. I guess this was all too much for me, all this happiness in the hottest month of the year.

So the slight fever I had, turned into a high grade fever after a couple of days and I was barely able to walk by then and was dealing with sudden full body pain, a bone pain that was so awful, even air from the fan was painful.

April 25th, Saturday night, the pain was too much already and I could not get up to pee anymore, we all decided to go to the emergency room at a nearby hospital because I didn’t know anymore what was happening and I was losing it. At the ER the bone pain was too much, it was unbearable, I was crying for pain meds. It was coupled with a crushing headache, where even light was painful, where at some point I started vomiting from the pain. I passed out and woke up at a different hospital. They transferred me because there was no lupus doctor who will manage my case at our local hospital. I would have wanted to have been confined at the Philippine General Hospital where one of my rheumatologists is a consultant but things happened so fast and I was too far gone to make any decisions myself. No matter. My other rheumatologist took care of me at the Asian Hospital and I started feeling better a few days after confinement. I stayed a week at the hospital. They upped my steroids and had me take all sorts of tests including a very expensive MRI. Happily all the tests came out normal (no pneumonia, no burst veins in the brain, no protein in the urine and kidney involvement, etc) but clearly I was in a flare my rheumy said. They think an infection got to me and I had a blockage in my sinus that might have been the cause as well. But the antibiotics and mega doses of steroids must have taken care of everything. I am now home, somewhere between fine and not fine.

released from hospital

This is me when I was released from the hospital.

I am still quite weak and in the first few days back home I was barely able to pee or bathe on my own. I am still not ok, I can feel it in my body, how it tires easily, gets confused easily. But mostly, I am scared to push myself too far in case something new comes up.

I honestly thought I was going to die in that ER. I couldn’t understand the pain. All that pain. When I woke up the next day, I thought to myself, well if I had died then that would have been it. I wouldn’t have been able to say goodbye to the boys in the midst of all that. Bone pain is the worst thing ever. I shudder to think of having to go through that again. Bone pain with migraine is a whole other creature in itself. Far too sinister. In hindsight, I don’t think I was in any real danger back there. It was a lupus flare and my first ever hospitalization with this disease, but all that pain could have fooled anyone that the end has come.

I feel so guilty having to put my husband through that experience. He was a wreck. I saw it in the exhausted way he slept in the chair beside me at the hospital. I was so sad. Thinking to myself, after our happy second wedding, we have this. A reminder that lupus is always at my door.

I am now in recovery mode, been staying indoors these part couple of weeks, avoiding the sun and being very careful not to tire myself out. Mostly I am in bed. I have no choice, I DO tire easily and I think I am still in a flare of some sort.

I made minestrone soup yesterday, which is a good sign I think, a wanting-to-feel- better kind of thing I decided to do. I wanted to eat it and imagined myself getting better from it. But I tired myself out making the damn thing and ended up not being able to go to my doctor’s check up in the afternoon. Boohoo! I protest! I protest this weak body!

I will see the doctor on Monday instead. In the meantime, look at this picture of my hearty minestrone soup. I feel better just looking at it. Recovery I tell myself. I am on my way to recovery.

Minestrone soup by Raia

My wanting-to-get-better minestrone soup.