My Lupus Story

Have you ever come across a tangle of necklaces? Maybe you just shoved them in a drawer at one point, or packed several for a trip. Inevitably, when you pull them out, they’ve become so completely ensnarled that you can’t tell where one ends and the next one begins. The harder you try to untangle them, the more knotted up they seem to become. At some point, you’re tempted just to chuck the whole mess and swear off necklaces forever.

This is the snarled mess that is my health. At every point along this journey, any time we *think* we’ve found the answer, we find there are still knots and twists we hadn’t even noticed.

While my symptoms date back to my teen years, it wasn’t until about five years ago that things really got serious. It started with headaches, progressed to unbearable kidney pain. Neither of which could be explained. After about ten months of struggling through appointments and bloodwork and tests, the symptoms went into remission. We all just shrugged, never having figured out what was causing them, and moved on with life.

In May of 2016, the headaches came back. I’m fairly prone to headaches and migraines anyways, but these are different. The pain is an intense pressure that starts at the top right side of my head, always the same spot. The headaches would become more frequent and more intense, until July, when they would just never stop. It became debilitating. More testing, more bloodwork, more question marks. Over the course of the next few months, symptoms progressed. I had dizzy spells, forgetfulness. The kidney pain returned. And everyone was stumped.

In September 2016, Dustin and I were married! We went on our honeymoon that next week, and when we returned, I had a bad fall down the stairs thanks to my neurological symptoms — and spent the next three months couch-bound and the three after that in a wheelchair. The trauma of the fall and resulting injury really set things off; my symptoms escalated so quickly we couldn’t separate what was what. Extreme fatigue, dizziness, brain fog, joint pain, muscle weakness, the list went on and on. I was in so much pain every single day, and nothing seemed to help. We spent months going to specialists and running tests and just kept running into dead ends and shoulder shrugs. I was told it was my weight (which I didn’t gain until I got sick), that it was all in my head (even though swelling was present), that I just needed to exercise.

Two big tests came back with clues in the summer of 2017. I tested positive for West Nile antibodies, which indicated that I didn’t have an active, acute infection but had contracted it at some point in the past few years. And my ANA (anti-nuclear antibodies) were very high. Depending on which doctor I spoke to, the West Nile was either the answer to it all or not even a factor. Talk about confusing!

Finally, we reached the end of our options here in Rapid City and I was sent to the Mayo Clinic in Rochester, MN. Once there, everything happened very quickly. I was immediately diagnosed with lupus (systemic lupus erythematosus or SLE) and fibromyalgia. I was told that the overlapping of the symptoms made it hard to distinguish that either of them was in fact present. I returned home with a care team in place and a plan (sort of) for moving forward.

Since then, we’ve been slowly untangling all the symptoms and overlapping disorders at play in my body. My dizziness was found to be most present upon standing, and after tests, we discovered that I have POTS (postural orthostatic tachycardia syndrome). Every time I change positions (laying to sitting, sitting to standing) my heart rate skyrockets and I get incredibly dizzy and can faint. Being on my feet for very long at all can become problematic. We still have no idea what’s responsible for causing the POTS.

I feel like a real-life medical mystery. I’m not even sure Dr. House could help me with this one. (Of course, he always said, “It’s never lupus!” so he’d already be wrong there..)

We’ve been experimenting with medications and treatments, hoping to find something to control at least one of my disorders so that we can see what’s left over. I’m currently on chemotherapy injections, which are making me sicker and NOT slowing the disease activity of the lupus. The latest development is an increase in central nervous system symptoms — foot drop, legs giving out, burning legs, hands dropping things, body temperature disregulation, and (I just found out) possible partial seizures.

At my follow-up with my rheumatologist last week, we ended up going through all these new and worsening symptoms. There is definitely cause for concern, and they’re sending me back to Mayo for more testing and neurology workups.

I’m now in a wheelchair almost every time I leave my house because of the risk of falling, the dizziness, and pain. I’ve grown so used to being in constant pain — I operate at a baseline of about 7 on the pain scale, and it only goes up from there. There are days that my cognitive dysfunction is so severe that I can’t read simple sentences and make sense of them. I make strange mistakes, like throwing away things that are definitely not garbage (hence the sign that’s been on our trash can for the past few months reminding me to “check yo’self”). Simple things, like writing this story out, take days rather than minutes like they used to. I feel like I have the flu…every. single. day.

And yet, I am so grateful for the things I’ve gotten from this season of illness. I’ve learned to actually care for myself. To make my needs known. My husband and I have a rock solid foundation to our marriage, built on self-sacrifice, intense care, and the intimacy that comes with the total (involuntary) vulnerability brought on by chronic illness. My kids and I are closer than ever because instead of “going” and “doing” all the time, we’re staying in and talking and connecting and growing. My faith is unshakeable. I am so ready for wherever God is leading me and my family! I’ve seen His hand at work through every single stage of this journey, and I know He’s got me.

My prayer right now is that the Holy Spirit will continue to weave these puzzle pieces together for my care team, to show them the truth of the situation. I am not overly concerned with physical healing, because I know that may not be in His plan for me, and He’s shown me how He can use my illness for His glory. I am, however, very much ready to be IN IT. To plan for and prepare for what lies ahead, and to finally settle into our “new normal” instead of being in constant adjustment.

xo,