One of the issues living with Dermatomyositis, beyond the disease itself, is the side effects of the medications that have to be taken for it. Many of them have pretty big hits on quality of life, causing an increase in nausea, sensitivity to sunlight (or increased sensitivity in this case) or suppression of the immune system.

Because of the loss in immune system function, I hear from my specialists and doctors often the importance of being careful not to get sick. Make sure not to touch my face too often, be mindful of grocery stores, etc. Sometimes though, you just never quite see a pothole in time. Earlier this week I started having some respiratory problems, particularly when trying to take a deep breath. I was in pretty bad shape breathing-wise, especially after first waking up. Unfortunately, over the course of the last couple of years these symptoms have become fairly familiar to me. Most of the time it is an upper respiratory infection, or the beginnings of it. Standard procedure is to let my doctors know asap when I start feeling sick as it is better to attack the problem first rather than rely on OTC medication or my body’s own ability to heal. While the carefulness is understood and appreciated, it can be a bit annoying to go from a life in which you have a head cold, and that sort of sucks but you go on with your day…to having to explain why I didn’t call sooner about that sniffle or cough.

Per the normal, I called and was instructed to go to the ER. The main reason for this is to check my peak flow (my ability to move air) and make sure that I am not losing respiratory function, or to boost it if possible. The other thing that is typically checked there are chest xrays in order to attempt catching pneumonia or other changes in the lungs. It should be noted that the ER doc did observe some changes in my lungs on this xray compared to one I had post-surgery in October, but that the changes were not acute and seemed to be chronic in nature. I will be following up with my pulmonary specialist soon to check on this.

In the meantime, this go around I have been diagnosed with bronchitis. I am unable to go to rehab until recovering because of the dangers of giving it to other patients at the hospital, so I am trying to do minor exercises at home, keep up with breathing treatments etc.

With the semester starting this week (my final undergraduate semester), I am very hopeful that in the coming months a large turnaround will come in my ability to navigate the world reliably. I want to be able to go to lectures and see the beautiful campus. Who knew that I would one day desperately miss being able to close my eyes in the morning and make the ‘decision’ to not go out that day. All in due time 🙂