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How Do I Live

Updated: Jan 1, 2022

It had been 3 months since I had been diagnosed with Antisynthetase, and trying to adjust to taking Azathioprine, Prednisone, and using supplemental oxygen had been life altering. I now had to make sure my oxygen tanks were filled with oxygen before my day started. Taking my medications on time daily and watching for any side effects had became the new normal. My breathing was no longer labored and I could talk without coughing, but it was probably because I was getting an extra 4L of oxygen flowing in me.

I really hated this mess honestly. I felt limited to where I could go and what I could do, while carrying a huge green tank. I didn't feel comfortable going anywhere that I would often frequent. The fear of being judged, people feeling sorry for me, and just looking down on me haunted me. Honestly, I was not comfortable with anyone seeing me that knew me. With the high dose of prednisone that I was on, the inflammation was not as bad, and I was able to function without the use of supplemental oxygen, to a certain degree. If I didn't use the oxygen, I would have a cough, but most times I would rather have a cough and drink tons of water to mask it, than walk around with the oxygen tank.

So I came to the conclusion that I was not letting this diagnosis define me. I booked a trip to Costa Rica for a week. I felt like if I could still do what I enjoy then I’m still living the way I want to live. Costa Rica is such a beautiful country. The weather was perfect in April 2016. I was able to book a resort last minute right by the beach with the pool right outside my back door. Life was going to be great if I had to make it so myself. Is what I thought. I was not going to allow this chronic disease that I just learned about depress me or halt my way of living.

After getting settled in my hotel room, it was time for me to take my morning medications. I grabbed my toiletries bag and to my surprise my medications were not there. I looked in my travel bag and there was nothing. I panicked, how could I leave the most important thing back in the states. I pride myself on being super organized, detailed, and meticulous. I am the friend that has the list of things we have to do and an itinerary to go with it. But how could I not bring the one thing that’s keeping me alive and stable. I instantly freaked out and started looking up pharmacies in Costa Rica. Here in this country the Pharmacy didn’t require a prescription from a doctor which was great, because I wasn’t sure if I could call in a script using my license number in another country. At this time I was on Azathioprine and Prednisone 20 mg. I knew it would be a challenge getting Azathioprine because it is not such a common drug outside the U.S., and I figured I could last okay without it for 7 days. So I just bought 30 mg of Prednisone to increase the effects and hopefully offset the Azathioprine that I was missing.

I managed to do well, I didn’t bring my supplemental oxygen because I felt like I was okay without it as long as I was on the Prednisone. Although, I would say during my time in Costa Rica, I was mildly breathless. I was able to walk around and talk while walking, but it was somewhat difficult. I still felt like I was gasping to get air in and drinking lots of water to suppress my cough. My coughing wasn’t as extreme and I still managed to enjoy myself. I took in a few cocktails, and did some activities such as ATV riding through the forest, and even went swimming. Now as a Physician Assistant I would have never advised my patients to do what I did, I was definitely playing with fire. But this was truly the denial and stubborn phase of my journey. I was still having a hard time accepting the “reality” of my health and I wanted to live the way that made me feel good. By no means was that a smart thing to do, but I knew I would pay the price for it later.

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