December 22nd – the day my world turned upside down
One year ago today, December 22, 2015, was the day I realized something was wrong. I came home for the holidays on the 19th and had a spot or two on my arm that I thought were bug bites. On the 22nd I woke up and knew something was off. I had what looked like really bad razor burn on my legs and more spots on my arms. Many, many doctors appointments, tests, and biopsies later I was diagnosed with HSP-Vasculitis – an autoimmune disease that affects blood vessels. Not only was this a painful disease, but also females usually don’t get it. So I was am an anomaly. It’s a long story so you can click over and read about it HERE.
Today is my one-year anniversary since I got sick – my sick-iversary. I haven’t been healthy for a year but I survived one year – and that is enough. I have been “better” for several months. Since I’m a “non-textbook case,” I hesitate to say that I am fully healed. We just don’t know. My blood-work is finally normal but I still have reactions occasionally. I have to stay on medication (Dapsone) for a while because without any medication my immune system will freak out again.
But I survived one year.
I am a different person – I see life in a new light – I have new dreams.
So what have I learned from being sick?
Everything happens for a reason
It might take a while to see – in my case almost a year – but there is a reason for everything that happens to you. In February, I couldn’t fathom why this was happening to me. Why I had to stay in Oklahoma. Why I couldn’t sing or dance (or even stand for a while). Why I couldn’t graduate. I felt like my life and my dreams were being torn away from me. Nothing could possibly happen to make that worthwhile.
I was wrong.
If I hadn’t gotten sick, I wouldn’t have started Glitter & Grandeur. If I hadn’t started the blog, I wouldn’t have applied for and obtained my current job as a blogger and social media manager. Before I got sick, blogging was just a tiny blip on my radar (something I thought about but had no intention of seriously pursuing). Now I am writing for two blogs.
If I hadn’t gotten sick, I wouldn’t have had the opportunity to study with the amazing teachers I worked with this past semester. I wouldn’t have had such a strong connection to each song in my graduate musical theatre recital – most of them related to my experiences with vasculitis.
If I hadn’t gotten sick, I wouldn’t have come into contact with six other amazing women who also have HSP. I wouldn’t have been able to give them hope, to learn with them, and to support them.
So many things wouldn’t have happened to me if I hadn’t contracted this disease. Then again, who knows what could have happened. I could have moved to Chicago or booked a gig performing on a cruise ship. I could have met my future husband. You never know – but so many amazing things did happen to me and that’s what matters. It’s not worth dwelling on the could-haves.
You can find positivity in every scenario
No matter how bad things get, there is always something positive to be found in the experience.
My doctor’s main concern (other than healing me) was that I would get depressed. Of course, I was sad and scared and cried a lot – but I was determined not to let vasculitis take away my happiness. At the time, it felt like it was taking everything away from me. I wouldn’t let it take anything else.
I also didn’t want to worry my family and friends. Living 17-hours away from my family and my sister was in Australia made that difficult. The last thing I wanted was for them to worry. I knew that if I chose to dwell on the sadness, they would know and worry. Instead, I wanted to show a strong face to everyone in my life.
I don’t like being pitied. It is very hard for me to accept help. I wanted everyone to know that while my situation sucked, I was pushing through it and was going to be okay.
There is light at the end of every tunnel.
Every time the doctor had to order more tests because we still didn’t know what was wrong with me was proof that I didn’t have a handful of diseases. Sure, we didn’t know what I had so we couldn’t treat it yet, but we knew what I didn’t have and that was progress – a positive. I can’t get off medication? At least I got out of bed and to the doctor that day. I can’t graduate? I can take more classes in the fall. Can’t dance? I can finally catch up on all those Netflix shows I’ve been missing. Sometimes the positive is a stretch, but it is important to find and acknowledge it.
You have people in your life who care about you
Throughout the past year I have learned who my true supporters are. I am grateful for each and every one of you. You know who you are. I even found new supporters. Be thankful for your friends and family. They are everything.
There is a God
I usually don’t talk about religion on here but I feel that this story is one to be shared. So bear with me just this once.
I grew up going to church and have sung in church choirs all my life. I never questioned my faith before I got sick.
At this point, I had seen 3 doctors, 1 dermatologist, and been to 2 ERs and no one could tell me what was wrong with me. It took almost two months (if I remember correctly) before I found a doctor who could help me. People had thrown out the idea of HSP-Vasculitis but they said that women couldn’t get that so that couldn’t be what I had. I could not understand why I was going through this – I mean, I thought I could possibly be dying. If there was a God, how could he do this? I couldn’t stand. I was in excruciating pain. I was consistently and rapidly getting worse. ERs couldn’t help me. Dermatologists had no idea what was wrong. And no specialists could fit me into their schedule except for putting me on the books for months later.
I was really struggling to keep my faith.
I still prayed for help and healing every day but I was second-guessing if anyone was listening. Just as I was about to give up, I felt the need to go to church choir rehearsal.
I was elevating my legs after rehearsal and a lady came across the room asking how I got Vasculitis. Turns out she is a rheumatologist and she saw a small section of my ankle from across the room and knew what I had. She comes to rehearsal only a couple times a year because she is busy saving lives – completely understandable. Miraculously, she happened to come in that day and notice me.
She fit me into her lunch break that week and has been my doctor ever since. Almost every other doctor wanted to put me on chemo but she is the only one who wanted to try other options first. She has my best interests at heart and is truly an angel. If that choir rehearsal wasn’t a God-moment, I don’t know what is. Needless to say, I believe again.
Lastly, you are enough
No matter what, you are enough. Whether you are sick or healthy, you are enough. There will always be people in your corner. Be yourself. Follow your dreams. Be kind. Be positive. You are enough.
I know this post is pretty long but I hope you were inspired by it.
Life can be pretty crazy. Bad things can happen. If they do, I hope you keep these lessons in mind. Don’t hesitate to reach out to me. I would love to be a listening ear or to talk you through it. I am here for all of you.
Life is meant to be lived. Let yourself grow and change. Roll with the punches and find the light. Spread Sparkle.
Now, I’m going to go celebrate surviving the hardest year of my life.
Find something to celebrate today – any little thing. What are you going to celebrate?