I have spent so much time thinking about my rare disease, cold agglutinin disease (CAD), that I am always in my head, concerned about how I will manage my daily activities. How will I do this? Should I go there? What will I do if that happens?
I have learned so much about myself in the past 3 weeks. When I was forced out of my comfort zone, I found that I am most often fine. I can do this, and it is easier than I thought.
My brother and I traveled down to South Carolina to be with my parents. A family member has lymphoma and when he became septic, it didn’t look good. We decided to drive down right away. The first thing I noticed as we stopped for food and gas was that no one, and I mean no one, was wearing a mask. I felt so out of place. I recently started to wear mine less, but this felt completely different. I found that I didn’t need it. I just stopped wearing it all together, except when I eventually got to the hospital—to protect the patients as much as myself. This was such a liberating experience that it opened other doors for me.
Continue Reading
When we arrived at our destination, we met with family many times at restaurants, and I was no longer paranoid about eating out. It all felt so natural, and I felt so normal. It was such a great feeling. There was one incident, however.
Read more about CAD treatment
I have, for a long time, contemplated what it would be like to live somewhere warmer. How would I fare? What about the constant air conditioning in every building? One night, we left the hospital late and were heading for dinner. We found a place still open and the moment we walked in, I knew it was going to be a problem for me. Everyone was cold as the air conditioning was blasting. We opted to sit outside because it was warmer out there, but not by much. I went to the car and grabbed my extra sweatshirt and a thicker coat I had brought for the trip. No other people besides my family were at the restaurant, so I felt comfortable wearing what could be seen as a ridiculous amount of clothing for the area and climate. Although I was a bit colder than I should have been, the food and company were great and I found I had no adverse reaction. What a relief.
My family was more than accommodating at the house and attempted to keep the air conditioning at the right temperature for me. The one issue I did have is because the house had central air, it was coming through all the vents. The cold temperature of the air affects me, but so does the direct blowing of air.
I must have looked insane standing on the bed when my mom came in: I had one hand on the ceiling and the other attempting to close the vents in the room. All in all, it worked out and we found a happy medium. Again, I experienced no adverse effects.
The hotel rooms I stayed in on our travels there and back were a bit trickier. I couldn’t seem to get the exact right temperature I needed to stay warm enough, and I would wake up sweating after I had gotten cold. I got through it, and again I had no adverse effects.
I found that I can also handle more physical activity than I thought. I have been in this “protection mode” for so long that I would only push myself a little bit. On this trip, I pushed myself beyond my comfort zone and it turns out, I am so much stronger and have more stamina than I realized.
All in all, it turned out to be an eye-opening experience. Our family member recovered and is on his way to getting stronger. I learned that I could do everything I used to do, just with a little tweaking. This is huge for me, as it has taken the better part of 2 years to truly get this through my head. CAD, it seems, has affected me more mentally than physically. I feel very thankful to be back to “normal.” Well, my new normal, which is not that bad, and for this, I am grateful.
