It’s Time to Talk About This

I have put off talking about what I’ve been going through for far too long. I’m not typically the type of person to post a long rant about my feelings and personal life, but it’s about time.

Almost a year ago, I got the flu. Just the typical stomach flu. However, after a week, it seemed I wasn’t getting any better. I had a horrific cough that made me sound like I’d smoked a pack a day for my whole life. For those of you that don’t know, I’m a vocal music major, so having a cough that persists is very inconvenient. Little did I know, this cough would end up being more than just inconvenient.

The doctors tried everything. Steroids, antibiotics, regular cold and flu medication, etc. But the cough persisted, I always felt tired, and I still threw up almost every day.

By the time March came around, I had the Rondelli Classical Voice Competition coming up. I was stressed because despite the fact that it was straight up painful, my cough was very frustrating when it came to singing.

So I finally asked my doctors to run more tests. I had CT scans, MRI’s, X-rays, strep, mono, and other virus tests done. I had blood drawn multiple times and was put on even more medication. It had gotten to the point where breathing hurt. It felt like a person was sitting on my chest all day, every day. I had to sit down after going up the stairs, couldn’t walk long distances, and was struggling at work to be on my feet and walk for hours on end while carrying trays of food and drinks.

And what did the medical professionals find? Nothing. Well, nothing conclusive. Abnormalities, but nothing specific. Nothing they could seem to fathom. Things showed up in scans that they were unfamiliar with, and none of my symptoms lined up with anything they’d dealt with before. And I felt so scared because these doctors, with years of experience in pulmonology, couldn’t figure out what is wrong with me. And if they can’t figure it out, how the hell am I supposed to?

I wasn’t just in pain physically. I was in emotional pain as well. I couldn’t even tell my family, my best friends, or my boyfriend. I was embarrassed and I couldn’t figure out why. I was embarrassed that my body couldn’t just do what it’s supposed to do and stay healthy. Embarrassed that my immune system couldn’t fight the flu and as a result it turned into something much worse. So, I fibbed a little. I told everyone I had a lung infection. It wasn’t a total lie. I did have a lung infection, but I just never told anybody that it cleared up after several rounds of antibiotics and steroids. The pain still persisted, though, so I continued to tell people I was out of breath, fatigued, or coughing because of a lung infection, even though it was ultimately because of something much bigger. It felt better to have a reason than no reason it all. It felt better to lie than to say “I don’t know why I’m coughing, nobody knows what’s wrong with me.” I hid it all from everyone who knew me, thinking “there’s no way it’s serious. The doctors will figure it out.”

Well, needless to say, the doctors didn’t figure it out. Still haven’t, actually. I still take several medications every day. I feel like a walking pharmacy. These medications do everything from relieve pain, make it easier to breathe, relieve anxiety and depression, and help me sleep.

I’m frustrated every day. I’m frustrated that I can’t seem to keep up with my friends as we walk home from the bars. I’m frustrated that I get tired after even a little bit of exercise, because I used to love running, and now I can’t. I’m mad that my doctors can’t figure out what the problem is. I’m mad that I spend every day trying to hide the fact that I am in pain. My chest burns, constantly. I cough so hard that sometimes I cough up blood. I get headaches that feel like somebody is drilling a hole straight into my forehead. I can barely sleep because I wake up, gasping for air, thinking, “this is it.” I get nauseous after eating and I can never finish my food. I fake smiles all the time and go out with friends even though I just want to curl up in bed. I spend most of my time thinking about the “what if’s” of being sick. I think about death, because we still don’t know the threat of the abnormalities I am experiencing. I have constant appointments at different offices and hospitals, and I am drowning in medical bills, which doesn’t help my stress. I fell behind in school, and will now probably graduate with my 5 year program in 6 and a half years. 

Because of this sickness, I have lost people I thought would be in my life forever. I pushed away the man I thought I was going to marry, because I didn’t want him to have to struggle through this with me. I fought with my mom because I wouldn’t let her in on what was going on. Even my sister could tell there was something wrong with me but couldn’t get me to tell her what it was. I didn’t talk to my dad for months, really. I saw being sick as a punishment, and I didn’t want to hurt anybody I loved by dragging them down with me.

But this sickness hasn’t brought all bad things. I was still able to travel to Austria and Germany in June with some of my best friends. I still got 2nd place in my category at the Rondelli Voice Competition. But above all, I got closer to someone I couldn’t imagine my life without. 

For the past year, I’ve had this one person who stuck by my side. He is the only person as familiar with my medical situation as I am, because he sees it on a daily basis. He has seen me faint from under-oxygenation, struggle for air to get to my lungs, fall down from exhaustion, scream, cry, and beg to just die because it hurts so bad. For 10 months he has dropped everything to be there when I need him, whether it’s to drive me to the hospital, bring home food when I don’t have to energy to get out of bed, make sure I take medications and get things done, or just spend time with me. He has stayed up at night with me or woken up in the middle of the night when I am screaming or crying because the pain is too much to handle. He has dealt with my clinical depression, anxiety, panic attacks, and breakdowns like a champ. He has seen me destroy almost every friendship and relationship surrounding me, but stuck by my side even when my actions threatened to destroy the relationship we have. He has cared about me when I felt like nobody else did. He has encouraged me to continue doing the things that I love. He has let me spoil him with gifts and attention simply because it makes me happy. He has left parties, bars, movies, and other events because I’m exhausted or don’t feel good. He has always made sure I’m safe, even when he can’t be right next to me. Truthfully, nothing else has helped more. Not a single medication has been more helpful than having one person take care of me. I’ve never really liked attention, never really liked feeling helpless. It’s helpful to me that only one single person witnesses that helplessness on a daily basis. I can’t begin to tell you how scary it is to be afraid of your own body, to be betrayed by the only thing you can really call home. It’s nice to have someone who creates a home for you that distracts you from the pain in your body. I truly can’t find the words to thank him for giving me a life that is worth living. Thanks for being the greatest person I know, Luna.

So, to those of you that don’t know me but are still reading this, go hug someone you love. They might be going through something and you have no idea what it is. To those of you that know me who have been hurt by me distancing myself from you or turning into someone you didn’t previously see me as, I’m sorry. There is no excuse. The only reason I can provide is that events like this change a person in ways that nothing else can, and I’m sorry. It doesn’t necessarily make it okay, but I’m still sorry. And thank you to those who have been helpful through this uncertainty in my life. Of course, thank you to my doctors, who are working hard even through inconclusive results. Thank you to my family, who is always supportive, even when I am not easy to talk to. And thank you to my friends who have stuck with me as I changed, even without knowing the reasons for it. You’ve shown me who my true friends are. There are those who have left me either because I pushed them away or because they were too caught up in themselves to be there for someone else, and because of that I have learned that the people who matter most don’t walk out of your life even when they’re asked to, or when they have their own problems. True friends set aside their own problems to help someone they love, and I’m glad to know I have some of those friends in my life.

I will still continue to keep the details of my health private between my doctors, family, and Andy. But I want all of you to know that if you have questions or are going through something even remotely similar, you are welcome to reach out to me for answers or advice on how to get through it.

In 2019, I want to work on being more positive about my situation. I want to work hard at Gella’s and at school, and finally figure out a way to beat whatever it is that’s hurting me from the inside out.