I debated whether or not I was going to write this post. I knew that in the end I would want to say something, anything that would make good come from what I’ve had to learn, but I wasn’t sure if it would come in the form of a blog post or a small social media post.
But looking back at the last few months, the moments where I’ve found the most hope have been ones where I saw someone else speak their faith and open up about what God did to help them through their own valley. So a blog post feels like the right thing to do. I really hope it is. And while we’re on the subject, you don’t have to share my faith for this post to helpful for you. But I could never tell you this story without that piece.
I suppose I owe you a bit of background information. First, I have an autoimmune disease. I’ve spent the better part of the last decade trying to heal my gut and reduce pain and inflammation in my body, and the past few years have been especially tiring in this regard. I have a poor immune system and while I’m very strong and muscular in terms of my ability to workout and lift weights, I have to be careful about the amount of work I put my body through during the week. I have a very controlling personality and the need to defend my health has certainly not helped to lessen this trait.
And another thing: I avoid doctors. Until this year I had only been to my doctor once since I started college, and I only go to the dentist and eye doctor when my parents remind me enough. Doctors have always made me feel belittled and alone, and I have yet to visit one who has ever given me an answer or a solution that has really helped me. I know this isn’t the case for everyone and there are amazing, gifted doctors who truly love their patients, but this hasn’t been my experience.
So back in February I managed to smack my head pretty hard. I’ll spare you the details, but I’ve been gradually learning that I gave myself a concussion that has impacted a lot of what has happened to me physically. Around the same time I was having chronic sinus issues and vertigo that was so bad that I’ve called 911 thinking I was passing out or losing my vision. I also had a bunch of hearing issues, migraines, and problems with spotty vision.
I carried on like this for a few weeks, until one day where I rushed myself to Urgent Care because my body was so cold that I could barely feel my hands and my home thermometer said I had hypothermia. The doctor said I was just cold and seemed like I had a sinus infection. He put me on a few drugs and sent me away. Two days later I was in the ER with a severe reaction to the Prednisone he gave me–I had gone absolutely insane, was having crazy panic attacks, and had a swollen, numb face and itchy hands. I will never touch Prednisone again after that experience–it’s terrifying to think about how little control I had over my mind and body when I was on it. I know Prednisone can make anyone crazy, but I knew there was something bigger going on with me. I tried to get them to run some extra tests at the ER, but they just gave me an allergy pill and watched me until they felt I was safe to be alone.
One week later I ended up going to a naturopath to have my blood tested to see if I had Hashimotos or another autoimmune disease that was making my issues worse. My panel came back showing no autoimmune issues, but I did have a bunch of hormonal imbalances, and my cortisol was through the roof. The naturopath was silent for several minutes after reading these results to me. The minutes felt like years.
I remember feeling like I was hit by a bus when he finally looked at me and told me I had some serious problems, and his best guess was that I had a brain tumor that was causing Cushing’s disease. He said it was probably early stage, and that I would soon begin to develop a hunchback and a moon-face, and maybe even total vision loss. He told me I needed to see an endocrinologist and undergo three stages of tests to see if this was the correct diagnosis.
I went into my car and cried. The world decided to rain, which I figured was some sort of sign that my life was over and I was never going to get to live my dream of moving to NYC and growing my own business. (I took the afternoon off and walked circles in Target to try to feel better, and also bumped into Charles Barkley. But I digress.)
I felt desparate for answers and like a ticking clock was fighting against me as I tried to find a doctor. I called several specialists that wouldn’t take me, but ended up finding an Endocrinologist here in Arizona who had an opening. I spent the next month driving back and forth to the office with urine samples and other various tests. Everything kept coming back positive for Cushing’s.
I need to stop here at this part and tell you how terrified I was when this all started, but how completely loved I felt on the worst days of this process. It was so hard to go home to an empty house thousands of miles away from my family after a long day of bad phone calls and tests. But God never let me forget how completely perfect his plan for me is. There was always a podcast I listened to or a story I read that felt placed in my life on purpose. On a particularly awful day I listened to this podcast
where I heard Jamie Grace talk about her life-long battle with Turrets, which started when she was only a little kid. She talked about how joy is not outside of pain. In other words, we can be in pain and still find joy. The two can coexist. We tell ourselves that we’ll be happy when pain is gone and things go the way we picture in our heads, but easy times don’t guarantee that we’ll automatically be happy. There is good to be found regardless of our circumstances, and joy to share with others no matter what we’re going through. Joy has to come from somewhere greater than what’s happening to us in the moment, or it’s fragile.
I held on to that—I’m still holding onto it. It’s a challenging thing to grapple with, too. Realizing this truth forced me to be honest with myself about where I was looking for joy, and how good I was at being thankful for all of the good that surrounds me in my life. It’s also made me passionate about showing others true joy and resilience every day of my life.
And look—I’m not going to pretend that I had a good attitude every day in this. I was unthankful, I didn’t always hand my fears over to God, and I was short with my family on the days where I was angry at what I was dealing with. It seemed unfair that I had to go through all of this alone after 10 years of fighting to be healthy, and after a miserable two years fighting through depression at school. I allowed myself to feel cheated and wallowed in self-pity at times, and I’m not proud of it.
But things changed when I really focused my efforts into finding joy in my day to day. The pain didn’t leave, and I still felt very scared at times, but my life was still something that I woke up excited about. I poured myself back into writing and creating at work and in my own blog and photography business, and I really started to see growth. I rebranded myself with a new mission: to help everyone I could find their own life-giving creative passion, and to help them find the courage to share it.
I quickly learned how important it is to do your own research and to seek second opinions. Through all of this I saw multiple doctors and even psychologists who all made me feel like a head case and tried to give me anti-depressants or other medications that I don’t personally feel are right for me. I felt like I had to fight and advocate for myself in every appointment. If you’ve ever dealt with any big medical issues I’m sure you know how exhausting this is.
On top of the pain, the doctors, and the bills, I also had several stressful issues arise with deciding whether or not to move back East and leave my apartment complex. But God still took care of everything in its time.
Another encouraging tidbit that I need to mention was this blog post about Hagar
. I know that not everyone reading my story is going to share my faith, but reading this one post was the absolute best thing that happened to me in this journey, and I really mean that. I never knew much about Hagar—she always seemed to be passed over in Bible studies and sermons. But Hagar knew what it felt like to be scared and alone, and her story came to me at just the right time. You see, Hagar was the only person in the Bible who ever named God. This woman—an often overlooked servant—did something that no other character in the Bible ever did. She named Him The God Who Sees Me
. Hagar knew that no matter how small the world made her feel, God could never lose sight of her, and would always care for her, and there was no amount of difficulty that would ever take that away from her.
I read this post often
because there are always days where we need to be reminded that we are seen and known and not forgotten. You aren’t forgotten, friend.
So as if this wasn’t getting hard enough to follow (I swear I’m getting back to the brain tumor part soon), I’ve also been battling some really bad TMJ, which was likely made worse by the impact to my head. Talking for more than 5 minutes is still really painful, my vertigo is still persistent, and the TMJ gives me clogged hearing, which is always annoying. On the more serious side, the nerve damage started to spread from my jaw and has limited my ability to use my hands. I can make it a few hours on my computer, but then crippling pain usually sets in and my hands don’t move well for the rest of the day. I’ve been in physical therapy for this, but it’s something I’m still working on getting answers for. I’m learning to take things one hour at a time, working through each symptom as I need to to get through the day. I’m also working at being thankful for those hours where my hands do feel ok. Not everyone with arthritis or nerve damage get’s to have good moments like that.
Back to the other part of the story: I ended up going for a brain MRI about a month ago, which came back negative. The endocrinologist was actually very enthusiastic about the health of my brain, so there’s that. All of my previous test results are still unexplained, but I’m taking steps to try to reduce cortisol on my own, and I’ll have it retested in a few months to see where I stand and what I need to do next.
My mom said something really profound, although she might not have realized it. She told me that sometimes God puts us through trials to give us things, or to take them away. I’ve been thinking a lot about what she said, trying to figure out which one this is for me. I still can’t tell you why the last 6 months has gone the way that they have, but I do know that I’ve been stripped of a lot of my need for total control. I’m sure there are reasons that I’ll never really know, or maybe God will give me a small piece of insight to this much later on in my life. I don’t know, and I’ve been relinquished of my need to know, and that’s a very freeing thing. Maybe I’m just too stubborn to have learned any other way than this.
And another thing: I have never been more in love with my life. Every day that I get to wake up and see and move my hands I am so thankful. I have so many big business launches on the horizon that grew out of my need to help others realize their dreams and use their gifts. I don’t know this for sure, but I’m willing to bet that I wouldn’t have had these new ideas come to light if I hadn’t been actively searching for ways to bring more joy into my world.
I don’t know much, but here is what I do know: Life is short, and it is also a rollercoaster. There are peaks and valleys with no discernible pattern. All that we can control is what we decide to make of what we’re given. We can make ourselves sad or miserable, or we can find the glimmers of joy and capitalize on them.
And I don’t know why I’ve had to pay stacks of medical bills or hear so much bad news this year, but I do know that my life is not a mistake, and neither is yours, my friend. I know we’re both important, and I know we are both seen and loved far more than we can ever know.
And I know more than ever that I’m doing what I was made to do, and that I want more than anything to help you find that same sweet spot. Because having the ability to create—to build where you see something barren or broken– truly is freedom.