Lupus Episodes

by Laguna Lupie

Most days I feel fine, a bit worse for wear sometimes but I have gotten used to the limits lupus has imposed on my life.

But there are days when I am acutely aware that I have this awful disease that simply won’t go away. I don’t know why but this past week I had a couple of what I call my lupus episodes.

The other night, while watching TV in our room with my older son, I suddenly felt a panic attack coming on. I couldn’t breathe and felt like I was going to faint. I told my boy to call his dad and good thing my husband knew where I kept my bottle of rivotril for such emergencies and after an hour of shallow breathing. Things went back to normal and I was able to sleep well. The next day was my baby’s Moving Up Day at ¬his playschool and I was still able to attend the morning ceremonies for that but when we got home I was exhausted and spent the whole afternoon in bed.

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Bambam looking handsome at his playschool’s Moving Up ceremonies

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He got “The Most Patient Award” which we found funny since it should be his nanny Ate Ambal who should receive this award from the playschool.

Yesterday on the other hand was my eldest boy’s annual school play. His school has this thing every year where they throw a grand theatrical production for the kids, as in they choose big world class venues (this year it was at the GSIS Theater at the CCP Complex), with wonderful costumes and set designs and all the kids participate, even the full orchestra performers are all students. It’s a great tradition and it speaks a lot about how the school takes the arts seriously.

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Anton in “The Lion King”

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Posing on stage with his friend Ralph after the play.

Anyway, this grand event was a full day affair and the summer heat and sun exposure (I forgot my umbrella!) took its toll on me. By the time we went home at around 8pm, I was feeling one of those bone tired fatigue moments that I know is a sign that lupus is on the attack. I told myself to calm down and that a good night’s rest will make me feel better the next day. On the way up the stairs to our house my legs gave in and for a moment I blacked out. I felt myself drifting off and feeling very dizzy. It took a while for me to realize that I was unable to stand, that my legs were shaking and that my head was spinning. My mother and my husband got me downstairs to the office sofa and I lay down there for an hour before we decided I had enough strength to go upstairs to our house.

Hay. Even typing this makes me so tired. I don’t know where it comes from. The sudden attacks. Lupus can be so unpredictable and it scares me. One minute I think I’m ok and the next I am down on my knees not knowing who I am or where I’m at.

Mostly I feel very sad that my eldest boy is forced to witness these fainting spells. That he sees me so weak and down. I was lying down last night and I saw him asking my husband if mommy is going to die. It breaks my heart he has to think about these things.

Today was his recognition day at school. I couldn’t go, of course, as I was still too weak to get out of bed from last night’s episode. My husband has work and deliveries to make in a nearby province so he asked my mom to attend the ceremonies instead. My mother came late and as a result my boy went up the stage alone. A friend texted me while I was in bed asking why didn’t you come to school today? Your son was near to tears and he was all alone. I almost cried myself when I read the message.

I have no picture to share for this year’s recognition day with Anton.

I was so angry at my husband for not being there, angry at my mother for being late and mostly angry at myself for being this weak and sickly mother who couldn’t come to her son’s big event because of a lupus episode.

When Anton came home earlier, he came up to me and still hugged me. He said, “Mommy I almost cried coz I was alone up the stage. And we were supposed to give flowers to our mommies but you weren’t there so I just gave it to teacher.”

I hugged him tight and he said, “It’s okay. I forgive you and I’m going to go biking now.” I thank god for children and their resilience. I hope my sons have more patience to deal with this as they grow up.

As for me, I have no choice but to deal with these painful episodes in my lupus life. Will be checked by my rheumatologist on Thursday and find out why the wolf has been acting up this past week.