Notes from my life with lupus
About a month ago, I got pretty sick. It started with an episode of vomiting and diarrhea, and then a day later, I had a cough, fever, and congestion. The stomach issues lasted only 24 hours. The cough lingered. Coincidentally, I was due to visit my pulmonologist in a week for a check-up and CT scan, so I thought I would wait and see what she would have to say.
The next week, I went in for my CT scan. An hour after, I saw my pulmonologist. She said, “It could be your virus reacting badly with your asthma, but I think I’ll prescribe some steroids just in case it’s an issue with lupus. It’s important to get on top of things like this when it’s lupus.” She then checked my CT scan. She said, “Well the radiologist report isn’t in yet, but I can see your pictures, and everything looks fine. There are certain issues of concern with lupus, but I see no reason for worry here.”
I started the steroids, and the cough got better within a day. The following week, I was feeling much better and ready to get back to my normal activities. While checking e-mail that had piled up, I noticed that the radiologist report of my CT scan was in, so I decided to look at it. Among other things, my results said, “There is minimal left basilar groundglass, which may represent atelectasis versus fibrosis.” I thought, Huh, what does that mean. I then e-mailed my doctor and asked her if there was a reason for concern.
I then decided to hit Google. First I Google “atelectasis”. That results in my finding out that atelectasis means a collapsed lung. I then think, “What the heck?!” I then Google, “minimal left basilar groundglass.” That leads me to the National Library of Medicine where I learn groundglass “can be observed in both benign and malignant conditions, including lung cancer and its preinvasive lesions.”
I think, Okay, this isn’t the time to panic. Maybe this is a weird lupus quirk. So then I decide to Google “lupus and groundglass”. That takes me to a BMJ Journals article entitled “Pleuropulmonary manifestations of systemic lupus erythematosus”. There, I read about the many ways lupus can affect my lungs, which include pleural disease, chronic interstitial pneumonitis, acute lupus pneumonitis, haemorrhage, and vasculitis, to name a few.
After about two hours of Googling and reading, I have decided that I have some sort of horrible lung disease that goes beyond asthma. I start questioning my life choices. I think, what has it all been for? I am the sort of person who pushes myself to exhaustion thinking, I’m not going to let lupus stop me. After reading about all the possible diseases I could have, I thought, It’s time to stop.
If I am 100% honest with myself, I haven’t been taking care of myself as well as I should. I often feel like there are other things to do. There’s no time to cook a healthy meal, I have to study. There’s no time to exercise, I have to get to work. There’s no time to go to the doctor, I have to volunteer.
There is always something. There is always an excuse not to take care of myself. I vowed that I would do better. I wasn’t going to let my imagined deadly lung disease get the better of me. I’m going to take care of myself from now on.
After a few days, my doctor got back to me. Her e-mail said, “Atelectasis just means that there are areas of lung that are not fully expanded at the time the image was captured. This is normal when we are breathing quietly (and not FULLY expanding our lungs). It is also normal to see atelectasis from compression along the backside of the chest when lying down. Don’t be concerned! Your lungs look great!”
So there you go. My lungs look great, but I learned a lot here. I learned that while Google has a lot of answers, it does not necessarily have the right one. I also learned that I do need to stop. I need to stop Googling medical issues, and just trust my doctor to answer my questions. I also need to take care of myself because lupus can kick me in the butt, and I’m going to do everything I can not to let it. I’m going to rest when I need to rest. I’m going to eat better, exercise more. The projects, job, studying can wait. My health and well-being cannot!