A Hole in My Heart

Last June I was told that I had a hole in my heart. A Patent Formulae Ovale is a hole in the heart that did not close after birth and is found in approximately 25% of the people. It's actually pretty normal. So normal that there are minimally invasive surgeries to repair it. Upon hearing this new, I became excited. There was a study done at UCLA that showed some promise in patients who had PFOs and migraines if the PFO was closed. Normally, people don't get excited when they find out that they have a congenital heart disease. I was elated. I couldn't believe that there was light at the end of the tunnel, that there was a diagnosis, a reason, a solution to my migraines that somehow made it all worth it. 5 weeks later, I went to go see my cardiologist and get more tests done. I had already planned out time if surgery and recovery if that was needed, so I could go back to college and start my sophomore year in the fall as planned.

I got so caught up in the excitement that I didn't stop to think about the consequences. It was like how I felt when I got the results of my CAT scan in the ER for my blood clot; I was relieved. I had something that was fixable. There was no messing around with possible meds and diagnostic tests, there were rules and procedures to follow. I've always been a rules and procedures kind of girl. I like structure. Well, I did, until my life became completely structure-less.

I spent almost 2 months, basically my entire summer of 2016, thinking that I had a congenital heart disease that could be fixed with surgery and with that surgery came a possibility of reduced migraine frequency. But I don't. It was a false positive. It took me until now to be able to talk about it on my blog. I felt crushed. I was so close to finding a reason for my migraines, I got caught up in the feeling that I had something that was actually considered pretty normal. I think I was scared to share it with all of you because once I shared it, it became a reality. I guess I was relieved, my heart was completely fine structurally and functionally. But there was some part of me that was upset that it was. When you're a medical mystery, sometimes it's nice to feel normal, to know that doctors see this all the time. I desperately wanted to feel like I was medically normal, and not like I was just trying to solve the puzzle that is my symptoms.

Last fall I got strep throat for the first time. When I found out and was put on antibiotics, my mom told me that she was relieved that I was "normal" sick. "Normal" sick as in not having to make plans to check into a hospital if the migraine doesn't break, or a blot clot pops up out of nowhere, or dealing with bronchial spasms. It's a relief to get a cold, because I can function with a cold. It's manageable, normal, fixable.

I'm sitting at home right now, writing this at 3 o'clock in the morning because I can't sleep. There's a major rainstorm right now, and the pressure changes kept me up last night too. But this is my normal. I have a routine, a procedure to help me fall back asleep, hopefully by 5 am, maybe 6. There's just too much that I cannot control. That's why I was relieved when I was told that I had a hole in my heart. Not because I was scared, but because it was something that could be fixed, controlled, and monitored. I don't think that much could scare me now. Honestly, the scariest thing for me is actually living my life. It's having opportunities and creating memories and taking risks. It's living outside of my bubble that I know is safe. Somehow, I keep putting one foot in front of the other and living the best that I can. Maybe it's my amazing friends who encourage me to live as much as I can but also care about my limits and boundaries. Or, it could also be my family, who believe in me possibly more than I believe in myself. But most of all, it's emotionally filling that hole that I thought was in my heart for two months, and realizing that if I kept blindly searching for a cause or a reason I would never be able to live my life. I may never know what causes my migraines. That doesn't mean I'm going to stop asking questions and educating myself. What it means is that I will no longer allow my happiness to rest upon the need to find a cause. It's like trying to answer the question of the chicken and the egg, what came first? There's no reason for me to place so much importance on a diagnosis. It may be years until I know what the true cause is.

Today is a difficult day for many of us. Actually, it's a difficult day for all of us. Many of us are worried about losing insurance, disability compensation and basic rights. Regardless of your personal feelings about our new president, it is important to speak up about our experiences. I am going to be doing a couple projects that compile experiences from all different types of people with chronic illnesses, from ER visits to experiences with birth control and other stories. The only way that we can combat the loss of insurance and care is by sharing our stories. So let's share them, and make sure that our voices are heard. If you are interested in being interviewed or have a story to share please contact me through my Facebook page at https://www.facebook.com/chronicmigraineellie/ or send me an email at e.donnerklein@icloud.com.

As always, have an amazing, migraine-free week.
Love,
Ellie