Caitlin’s Autoimmune Story

MEET CAITLIN

My name is Caitlin Michelle Castillo. I am a new graduate from the Virginia Commonwealth University School of Nursing. I grew up in Virginia for the majority of my life with my parents and 3 siblings. I have always been ambitious and involved in my community. In high school, I spent a lot of time in sports such as tennis and volleyball. When I went to college, I knew I wanted to continue this momentum. I joined a sorority, I volunteered, I joined councils, and had a part-time job. I wanted to do it all. My junior year of college, I found a passion for crossfit training and Olympic lifting. I learned the importance of being strong and taking care of my body. I knew what I wanted my future to look like and I fought for it everyday.

 DIAGNOSIS

In March of 2020, I wanted to spend my last spring break vacation with my friends on a beach in Mexico. The previous year, I participated in Alternative Spring Break, so this was very unlike me. It was intended to be our final “hoorah” before graduation. It was on this vacation, I began to notice changes in my body. I was having trouble finishing a meal, smiling, speaking at times. I tried to workout at the hotel gym, but it was unusually difficult for me. At the time, I didn’t think much of it. On our last night, I attempted to take a group picture. I could not smile and it showed in them. I was terrified. Was I having a stroke? That night, I found myself stuck on Google. As a nursing student, I knew this was a bad idea. It only created more panic in my mind. Myasthenia Gravis was one disease that I bookmarked, regardless.

I decided I was being crazy on the flight home, that nothing was wrong and maybe I had too much sun. But, after a week of being home, theses issues did not go away. I came back ready to finish up my senior year of college. Then, COVID-19 changed a lot of that too. I was frantically trying to finish up my assignments, clinical hours, projects, and presentations all at the same time of being paranoid about my health. But, again, I played it off. I emailed my PCP when I realized how weak I was becoming. Before spring break, I could do 40 push-ups, easy. I was attempting to begin a home regiment because of the closures in the community and discovered I was unable to do one. So, we met online. I told her exactly what I was experiencing and that I kept going back to the same illness, “Myasthenia Gravis.” She agreed that doing blood work was the best way to get started. She also tested me for RA and Lupus. I waited 2 weeks for the results, however I didn’t need them to tell me something was really wrong. On April 1st, April Fool’s day ironically, I received a call from my doctor. As a nursing student, I knew what was happening. She was preparing me for bad news. My labs showed that my Acetylcholine levels were abnormally high, which confirms the diagnosis of MG. I was instructed to go to the hospital that day so that I could begin treatment. They didn’t know how bad I was, or if I was falling into an impending crisis, so there was a sense of urgency. I was started on IV steroids and other prescription drugs, medications I would be on for a long time. It has been 4 months since my journey began, but it has been a roller coaster regardless.

In the beginning of May, I began to deteriorate quite rapidly. I was not able to eat, chew, talk, or swallow for about a week. Again, I was making excuses, that this was just my new “normal” or I was just overworking myself. But no, I was beginning to spiral down. So in mid-May, I was admitted again to receive my first session of IVIG treatments. I had some small reactions, but nothing life threatening. I was released after 5 days and came back feeling like a new person. When I was first diagnosed, I knew that I was going to have to be my own advocate. In order to do this, I had to stay educated. I thank my health care and nursing education/experiences for this because I don’t know if I would have had the same experience.

 LIFE CHANGE

I have only dealt with Myasthenia Gravis for a short time, but the impact on my life was almost abrupt. I was a very active individual before my diagnosis and now I wake up unsure of what I will be able to do or handle. I tend to go to bed much earlier in order to recharge my body. I am very aware of what I can and can’t eat. I have be on top of my medications everyday. There are a lot of things I think about now, that I didn’t have to before.

 HEALING

When I was first diagnosed and sent to the hospital, I was completely alone. I wasn’t allowed to have visitors due to COVID-19 and this placed a lot of stress on me, which in turn made some of my symptoms worse. I found that meditation and mindfulness was a tool that I started to use again. I was able to calm myself down and come back to reality. Throughout my journey, I have also found peace in talking with others who have MG. I found a support group that sent me a lot of love and continues to do so. I have also tried my best to eat healthy, non-inflammatory foods and take walks when my body allows.

 STRUGGLE

Mentally, I still struggle with my new life/reality. Because of the way it happened, it feels unreal at times. How did I, a 22-year old girl, end up here? This is a new journey for me still, so I hope in time I find peace.
Physically, I still struggle with some physical activities. I can’t hold items too long, no matter how heavy, or my muscles start to give out.

INSPIRATION

“You don’t always need a plan, sometimes you just need to breathe, trust, and let go and see what happens.” -Mandy Hale

One thing I had to come to terms with was letting go. I planned my life for 4 years in college, I did everything right, I did everything by the book, and suddenly my health changed. I encourage you to forgive yourselves. It is easy to say things like: “well maybe if I did this..” No, we did not choose to have an autoimmune disease and its not our fault. In moments of frustration, we just have to continue to love and forgive our bodies and support others around us going through similar things.

Find Caitlin | @caitlimichelle