This is what someone with an invisible disorder and chronic pain looks like. While it’s not visible on the outside, it’s very much real on the inside. Even though I look like I feel ok, most of the time I don’t. Starting this blog and my Instagram account (@theheadacheheroine) has allowed me to open up more than I ever have before about my health journey. However, it has also left me feeling very vulnerable and nervous of what others may think. Still though, I’m so happy to be doing it because it allows me to spread positive vibes while supporting and reaching other people who may be feeling the same way about something in their life, health related or not. I hope to be able to support fellow chronic pain and invisible illness warriors stay strong through their own journey.
Therefore, I’d like to share my story with you.
I started getting exertion headaches around the age of 12. It was a new and terrible feeling. I played competitive fastpitch softball at that time (and up until I was 16) so I was exercising and exerting myself almost daily. When the heat was bad and the humidity was high, and I was exerting myself out on the field, I would always get terrible pounding headaches.Resulting in me laying down, sitting out games and practices and feeling like a bit of an outsider compared to my teammates. I wasn’t sure what to do about it, so I just ignored it for a couple of years.
By the time I was 14 I started looking into seeing a doctor for my headaches because they hadn’t gotten any better. Between the time I was 14 and 16 I had seen neurologists, ENT specialists, allergists, and general practitioners. I had undergone an MRI, CT scan, allergy tests and IV’s. I had tried a wide variety of medicines as well. Nothing seemed to help.
During my teen years, I also found myself in the ER more times than I ever wanted. Dehydration, repeated fainting, more dehydration, extreme stomach pains, and more dehydration (or what they claimed to be dehyrdation.) I never truly understood what was happening to my body. I was constantly interrupting big plans (New Years Eve parties, Mother’s Day, and surprise parties for family members to name a few) because my health kept sending me to the hospital. It’s a terrible feeling knowing that you’re the reason parties got canceled and peoples nights were ruined due to worrying about and taking care of you. (s/o to my older brother who didn’t get mad when I threw up on his shoes outside the house next to the ambulance, my best friend for sticking by my side in the ER on News Years Eve instead of at a party with all our friends, and for my parents for always telling me they didn’t mind spending hours upon hours in a cold, stale hospital room.)
It had come to a time where I had to decide that my health was more important to me than playing the game that I had such a passion for, which was softball. I was an athlete at heart. Since my dad was the head coach, him and I were the glue that kept our team together. Therefore, my quitting resulted in the disbanding of a team that had been together for 7 years.) It was the hardest decision of my life at the time, deciding to quit playing for good. It definitely had a significant impact on me mentally and emotionally. It led me to a sad period of my life. I didn’t know how to fill the hole that was once occupied with the love of the game and my teammates that I considered family. After a year of being sad, I decided to take charge of my health and see more doctors. This time, I was prescribed Topamax (an anti-seizure drug that is sometimes used to prevent headaches and migraines.) I was hopeful that this medicine would help me, but it did just the opposite. I experienced major negative cognitive side effects. I couldn’t retain information, my short term memory was crap and I just felt foggy and dumb. After a while I knew I couldn’t be on that medicine anymore. But this only lead to more disappointment and being unsure about the future. While I was still upset to not be playing softball anymore, I knew it was in my best interest and that it would open up new doors for me. Which it did. Instead of trying to get recruited to a school to play ball like most of my teammates were doing, I ended up at Virginia Tech. Which was the best thing that had happened to me in so long. I met lifelong friends and made incredible memories that I will never let slip from my mind.
During my time at Virginia Tech, I did trial and error with a number of prescriptions given to me by different doctors. Beta blockers, blood pressure medicines, anti-seizure drugs, OTC meds,etc. You name it, I tried it. I’ve gotten multiple blood tests done (one time 8 viles of blood at a time, to which I of course passed out during the process of taking my blood.) None seemed to do anything helpful. It was getting frustrating and redundant. At school, I ran into my other fair share of medical problems that either landed me in the ER or another type of doctor’s office. Thankfully, I had family and seriously amazing, loyal friends who sat by my side in waiting rooms and who drove me when I couldn’t drive myself. (You all know who you are, and I am seriously forever grateful and blessed to have you in my life.)
It kind of became my “thing.” You know how people have “things?” Some people have a singing talent, some people are always the top of their class in school, etc. Well my thing was always being in a doctor’s office or hospital. My thing is that I’m always getting blood taken. My thing is that I have a fainting problem. One time I called my dad from school and he answered with “What hospital are you at this time?” (Granted he was saying it in a joking manner…I think…but to his credit I actually was sick at the time.)
It’s not a “thing” I’m very proud of. But it’s something I’ve embraced.
Flash forward to now and I’ve kind of started from square one again. I’m consistently seeing my neurologist, trying out acupuncture, sleep studies, allergy testing, eye doctors etc. It’s such a trying process, but I don’t want to just give up even when I don’t see results. The thing is, I know there are people out there fighting for their lives. People who live at the hospital. People who have to deal with chemo and things so much worse than what I’m going through. People who are so much stronger than I’ll ever hope to be.
While I constantly pray for those people and hope with all of my heart that they find the answers and cures they deserve and need, I’m still proud of myself for fighting my own battle.
I’ve learned a lot about myself throughout this whole process. I’ve learned that I can get knocked down and get back up again. I’ve learned that no matter how many times I get blood taken, I will never get over my uneasiness and hatred of needles. (seriously, I get weak every time.) I’ve learned that it’s ok to cry. To feel sad and frustrated. Defeated and broken. But in contrast, I’ve learned how to make myself keep being proactive and not to give up. I’ve learned coping methods and survival techniques. (AKA I’ve learned how to really binge watch Netflix and how to match my mood with a fitting ice cream flavor.)
I’ve learned a lot about the people around me as well. I’ve learned that people come and go and that that’s ok. Some don’t understand while the others try their best to. I’ve learned that I have the most amazing parents and siblings who go to doctor visits with me, check in on me, encourage me, and do whatever they can to help me feel better. I’ve learned how to tell who my really close friends are and how to never let them go. Meaning, I’ve learned who my “people” are. The ones who encourage me when I’m discouraged. Build me up when I’m feeling broken. Be strong for me when I’m too weak to be strong for myself. They can say the words I need to hear even when I don’t want to hear them.
I’m not sure what I really expected people to think about me and my thoughts when I started this blog. I obviously knew I was letting people, friends, family and strangers, into my mind after I published my first post. People will have their thoughts and opinions, I’m ok with that. I’m ok with people reading every post, looking at my blog once in a while and I’m also ok with people not ever even taking a glance. That’s because I started this for two reasons, and two reasons only. I started this blog to help me find solace through writing. To really create an outlet for myself as I continue to go against this obstacle that doesn’t seem to have an end in near. Secondly, I started this so that I could maybe reach other people who are struggling with something similar. I hope to encourage other people and create a support system for someone who may not have the support they need. I do this to hopefully help people stay positive even when the day seems to have nothing positive in it.
So I thank you for reading, supporting and encouraging me.
Maybe now, someone else will find inspiration to take their own personal story and struggle and turn it into something positive as well.