Surviving My First Lupus Crisis

IV Pole Xmas Tree

The hospital staff called my IV pole my “Christmas tree” because it was so heavily “decorated.” I named it “Murphy”.

My abdomen was as tight as a drum. I had severe bloating. I was huge! My abdomen was as round as my skin would let it stretch. I was suffering from a lupus attack–a major one. My intestines were inflamed to the bursting point. I didn’t realize how bad my situation was until much later. I kept getting bigger. I had a ton of bags hooked up to my IV tree. The first few days none of my doctors knew what was happening to me nor did they know how to treat me. The word surgery got tossed around, but it was clear that the doctors did not really want to go down that route. Shoot, neither did I.

I remember friends and family visiting me. However, I don’t remember the details of all of our conversations—just snippets here and there. I think it was the drugs and the pain they were masking. I dreaded the long nights at the hospital. The first couple of nights I would fall asleep and then feel like I was being suffocated. I’d wake up in a panic—fighting for breath. From then on, I was nervous about falling asleep. I was uncomfortable in the hospital bed, but I was grateful that I could be propped up in it. I feel like I was less likely to fall into my suffocation bouts while sitting up.

I could tell the doctors were getting nervous. I saw them more frequently. They ran tests and scans. No infection, no food poisoning. It was all lupus related. They’ve never seen anything like this, they said. Everyone was nervous. Everyone was worried.

Finally at about day 4 or 5, one of the surgeons came in with a hopeful smile on his face. He said, “I think we found something.” He found a study that basically saved me. The treatment was 1 gram of prednisone for three days in a row. That’s 1,000 milligrams of prednisone each day. Yikes! For sure, I wasn’t sleeping for a few days—prednisone causes insomnia. The treatment worked. My abdomen started to slowly shrink.

After about almost 2 weeks in the hospital, I finally went home. I was grateful to be alive. My body started returning to its former self, but I was forever changed. It was time to get serious about this disease called lupus.

2 thoughts on “Surviving My First Lupus Crisis

  1. Isabela Riedel says:

    Nice introductory post, Monica! How clever to name your IV tree, but why Murphy? 🙂
    Good luck with your blog! I’m sure many will benefit from it.

    • Monica Monica says:

      I had to take my IV tree with me everywhere, “Let’s go Murphy. Come on Murphy.” The name just came to me. I was getting tired of lugging it around–sort of a nuisance in the lavatory (you know what I mean?). By naming it, I could feel more positive about its presence. And thanks for the kudos; I am having fun being here.

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