Hi, I’m Irina. You probably know me as the girl who is always smiling, who loves Disney way too much, and is rarely seen without an iced coffee in hand. What you might not know, however, is that behind the grin that I wear with pride, that I have been dealing with a medical nightmare for the past four years. Here’s the rundown for those who are new to my blog, or a refresher for those who want a play by play of this crazy journey I’ve been on. Flash back to May of 2016. I was happy, healthy and had just received my Bachelors Degree from a prestigous Liberal Arts College. The future was bright, and I was excited for everything that this new world called adulthood, had to offer. I started working for the Hispanic Heritage Foundation (which I absolutely adore and whose staff are like family) and quickly got sucked into the corporate world of working, eating, sleeping but I was happy. Things were looking up and I was doing well…until I wasn’t. I noticed that about 3.5 months into this new job, that I was growing increasingly more tired and was spending all of my time when I wasn’t in the office, in my bed, sleeping. It seemed as though no matter how much sleep I got, that I was still exhausted (something I still struggle with to this day.) I could sleep for 11 hours and wake up the next morning with my legs aching, and bones screaming for more rest. Eventually I was so fatigued and run down that I wasn’t able to work, and put myself and my health first, which was something I wasn’t always used to doing. You see, I grew up as a gymnast, and was taught to push through injuries, smile and suck it up when things got rough. Definitely not the healthiest habit to have picked up on, but at the same time, it has helped me through some of the toughest things I’ve had to deal with. Anyways, I left my job but stayed in touch with my co-workers and was diagnosed with mono shortly after…no wonder I was always exhausted! What I thought was mono, ended up being far worse, but I wouldn’t find that out for many years. Basically to make a really long story short, I’ve been sick with a daily fever of unknown origin (low grade…usually between 99.5 and 100.5) and deal with crippling fatigue to the point where I cannot function to the degree I would like to. I am a type A, go getter who does not like to sit still, and the fact that my body is not letting me do what I want to do, is aggravating. I want to do things. I want to go out and see the world. I want to be active, but I simply can’t. It’s taken 4 years, dozens of doctors, more blood draws than I can count, and countless painful procedures that have left me with physical and emotional scars, I am closer to a diagnosis than ever, but still do not have the definitive diagnosis in my hands. I have seen doctors from Mayo Clinic (who have been wonderful to work with) and have seen more than a couple of doctors who have not been gifted communicators and have told me straight up, that (this is word for word, from the notes app on my phone where I’ve recorded all of the ludicrous things I’ve been told be certain medical professionals.) -Your symptoms are the byproduct of delusional thinking -There is a 0 percent chance anything is wrong with you -If you had cancer, you wouldn’t know it or wouldn’t feel any symptoms The list goes on and on but you get the gist. You see, when you’re a twenty-something young woman with a history of mental health conditions, it’s easy to be overlooked by the medical community. It’s easy for them to just assume that your symptoms are in your head, or that they’re not as bad or debilitating as you’re making them out to be. And to this I say…what a load of crap. How can doctors see that a patient has consistent abnormalities in their blood tests, have visibly enlarged and painful lymph nodes, present with a fever every single day, and not be able to work or live life to the fullest because of debilitating fatigue? How can you assume I’m “fine” or that I’m “mentally unstable” when my symptoms are REAL? What I have learned through this insanely long process is that if your gut is telling you something isn’t right and if you are presenting with symptoms of any kind that persist for extended periods of time, that you shouldn’t take the first doctor’s opinion, as cold hard advice that you should take to heart. You should keep fighting for a diagnosis, no matter what you are experiencing. It is not your job to convince doctors that you are sick, yet that’s the world we live in. This blog is not a place where I intend to call out doctors or belittle the work of those who have helped me and stuck by me through all of this craziness. I do, however, want to address the very real issue of medical gaslighting (doctors trying to convince patients that their symptoms aren’t as bad as they seem, or that they simply do not exist.) I am sharing my story because my voice has been silenced one too many times and I’m here to say that my voice is worthy of being heard. My story is one of courage. My story is one of resilience. My story is one of optimism and of magic. My story is one of hope. My story is my own but I am choosing to share it with you. I want my unique perspective to have a chance to be heard. I want to document the highs and lows of the diagnosis I am most likely going to be receiving…a cancer diagnosis. I want to share the pretty things, the things we wrap in packages with neat bows and ribbon. I also want to highlight the things that aren’t so pretty, yet come along with those packages. The pain. The heartache. The immense sense of hopelessness. But more importantly, I want to highlight, document and embrace the immense power it has taken for me to ‘just keep swimming’ even when the waters get rough. I am sharing my story so that it might encourage you to share yours. I am no saint. I am no hero. I’m just a girl with a vision, a girl with a dream, and a girl who is doing everything in her power to look this diagnosis in the eye and say, “not today satan…not today.”
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