All’s well that ends well.William Shakespeare
3 years. On July 13, 2017 I walked into my rheumatologist’s office for the first time. 3 years ago, I went in nervous and came out terrified. 3 years ago, I left with many more questions than I had answers. 3 years ago, my whole life changed and has never been the same since. Anniversaries are hard. These last 3 years have been the hardest of my life. I’ve learned a lot, grown a lot, dealt with a lot. I knew nothing when I walked into that office for the first time. 6 weeks prior to that first appointment, my pediatrician told me my blood work came back with titers for Lupus. So that’s all I had, all I knew. I waited a little over a month to get in with my rheumatologist, I had no clue what I was in for, or how much my life would change. I remember July 13th 2017 like it was yesterday. My mom and my sister came with me. We of course stopped at Starbucks first, and to this day I don’t go to an appointment without coffee or iced tea in my hand. I didn’t have time to shave my legs that morning, so I apologized to my doctor at least a hundred times for my stubble (I’ve since learned that they really don’t care what your legs look like). I cried practically the entire visit. I was 18, terrified, and lost. I connected with my doctor right away, and I have come to realize that our bond is special, and a lot of patients aren’t as lucky. We talked for what seemed like hours. I had so many questions, some of which couldn’t possibly be answered. I had 10 viles of blood taken that day, they tested me for so many illnesses. So I left with my next appointment booked for 4 weeks from that day. And my journey began. It would take another 6 months to be diagnosed with everything. CREST Syndrome came first, then Lupus, Polyarthritis and Undifferentiated Connective Tissue Disease (UCTD). I’m one of the lucky ones (I know what your thinking, how could I possibly consider myself lucky?) well, some people go years without a diagnosis. So, yes, I am lucky. I’m lucky because I have amazing doctors and a fairly quick diagnosis. Because of my quick diagnosis, I was able to start treatment. But treatment didn’t come without many bumps in the road. It took my doctors and I almost 2 years to come up with the right treatment plan and combination of medications. It was a long and painful road. It was hard for me to keep going, because I didn’t see a light at the end of the tunnel. It took my potassium being at an extremely dangerous level, a trip to the hospital, a stress test and an EKG, a colonoscopy, and a severe flare up that lasted almost 2 months, to find the right medication for me. I literally never thought that I would be able to function again, but then Methotrexate came along and completely gave me my life back. It’s crazy to look back at everything I have gone through in these last 3 years. I still struggle a lot. I’m still so angry, so confused, so frustrated. It’s hard when your life seems to change in an instant. It’s like a punch to the gut when you realize the life that you have imagined for yourself is not guaranteed. The person I was 3 years ago is not the person that I am today. Of course, everyone changes and grows, chronically ill or not. But, I had to do it a little bit faster and a little bit differently than everyone else. And I’d be lying if I said that I wasn’t angry about it, but that’s what therapy is for. And, let me tell you, therapy is really frickin’ hard. So if you’re in therapy, for any reason, you are a super strong person for wanting to better yourself, and I’m so proud of you for that. I’m told all of the time that I’m a strong person, and deep down I know that I am, because I wouldn’t be here today if I wasn’t. But there’s something I think about a lot. Does trauma make you a stronger person, or simply just a person who was forced to change even when the world around them stayed the same? I don’t know. I guess that’s for you to decide. What I do know, is that I have an incredibly strong support system around me. I have never felt like I was doing this whole thing alone. I’ve never been afraid to cry or fall apart because I know that I have people that will stand by me to help pick up the pieces. That’s a pretty special thing to have, and I will be forever grateful for it. I’ve become a much more independent person, I’ve been able to find my voice, I’ve been forced to become a more positive person, because surviving would be impossible if I was negative. I’ve realized the maybe this was always the person that I was meant to be. Maybe you don’t really get it if you aren’t in my shoes, but I think that I was meant to be someone with struggles. Someone with a story important enough to share, someone with a life important enough to be heard. I want to help people, I want to be a voice for people who can’t find theirs. Because I was that person with a voice that was hidden behind my own self doubt. I didn’t know it then, but I was a person with a story that wasn’t written yet. I was a person who had no idea what was barreling towards her. I was a person who didn’t know that there would soon be a point in which everything would forever be labeled as a before and after. Before I got sick, before my life changed, before I knew who I was supposed to be. I’d much rather embrace the after, because I know who I am now. I know what my purpose is. It’s hard and messy and disappointing and scary, but it’s my life and it’s beautiful. All I do is wake up everyday and try to be a better person than I was the day before. 3 years ago, I didn’t know what was coming, what to expect, what to think. Looking back, it’s been more than I ever could have imagined possible, in both good and bad ways. I’m thankful that I get to do this thing called life every single day. My favorite book of all time is Us Against You by Frederick Backman. I’ll tell you all my favorite line, “everyone is a hundred different things, but in other people’s eyes we usually get the chance to be only one of them.” I hope when people look at me they see someone who didn’t let their illness take over their life. That’s all I’m really trying to do. So, happy 3 years CREST, Lupus, Polyarthrtis, and UCTD! I don’t like you most of the time, but you’ve made who I am today, and I really can’t hate you for that.
2 thoughts on “3 Years”
You are incredibly brave and strong and what an amazing outlook you have on life. It’s so much easier to be a pessimist. I’m older than your dad, who taught both my kids in Madison, who become a confidant to both of them. I am usually that pessimist. But I follow you and love your optimistic words and attitude. I hope to meet you some day ! Stay strong ❤️💪🏻
Regards, Ellen Graffeo
Another beautifully written, heartfelt blog by the amazing, Ellie! Stay strong and be well. Always in my prayers!