An interesting aspect about my disease progression has been looking back in retrospect at symptoms throughout my life that pointed toward this eventuality. I’ve never been completely healthy, and have gone through a lifetime of doctors telling me to just wait and see because nothing was readily apparent. I can’t blame them, who could have seen this coming?

One such story occurred a few months before I finally fell sick. I was meeting some family on a trail at Elk Reservoir when around a mile in I felt like someone had stolen the wind from my lungs. This has had happened once before when I was in Joplin, and I was assured that it likely had to do with my asthma. However, I have had asthma my entire life, and both in Joplin and on that trail I knew this was something else. It was like trying to breathe through a dense fog. With my phone dying, I managed to call EMT services and tell them my location. They helped me get off of the trail with oxygen, while it felt like it took everything I had to stay upright. Once again I told those around me that it wasn’t asthma. This was something else…

Fast forward to half a year later. Two months after the reservoir, I had been diagnosed with dermatomyositis, and now I had spent several months battling the onslaught of symptoms while trying to maintain school work. In January of 2014, the same breathing phenomenon I had experienced only a couple of times before returned…and never left. For the last year and a half I have felt like I’ve been trying to catch my breath. Initially I visited the ER often, which carries with it its own set of problems because eventually you come across as a drug seeker or someone wasting their time. But not being able to breathe is a feeling that is much more difficult to control mentally than pain or skin problems.

Some of my doctors came to the conclusion that my thoracic muscles, like the rest of my body, have been weakened. Because of this, the motion of breathing in and out is simply too tiring for me to maintain. Of course, you can’t stop breathing to rest so finding a solution to this has come to the forefront of my battle. This feeling of losing air has been the single greatest factor on pressing pause in my life. For example, I cannot travel because it is difficult to stay calm when breathing gets worse, and I don’t want to be in that situation on the highway, and I haven’t been able to finish a complete semester on campus because of the difficulties of getting to class without feeling like I need to collapse.

A week ago I had to make another ER visit because of worsening breathing, and so I could not sleep. They were able to help me with pain, weakness and getting me to sleep..but the battle goes on. I use this chart that I worked on with my therapist to identify to myself and others where I am:

I’m writing this now while using a nebulizer that does little more than take the edge off because I dared to take a shower today (the steam and movement damage me pretty quickly). Now, and every other day, I’m just trying to catch my breath.

Enjoy the weekend if you’re getting a chance to, catch you all soon!