I’m not going to sugarcoat anything. This year was undeniably and undoubtedly the worst year of my life so far. And yes, I say so far because I know things can always get worse. If I’ve learned anything, it’s that we simply cannot predict our futures – you’ll never see what’s coming!

2024 was full of tears, trauma, loss, grief, suffering, shame, uncertainty, failure, and struggle. Feelings of simple joy and happiness have been painfully elusive. Each morning when I wake up, I’m hit by a wave of grief and panic. I can’t believe I exist in this body and live this reality. Having pemphigus still feels like a nightmare I can’t escape.

But…

Even amidst the relentless struggles of being ill, I want to acknowledge some successes and accomplishments for the year. Despite so many things going wrong, I got some things right!

I Did Not Give Up!

So often, I just wanted to quit. There were days, if given the choice, I would have opted to lie down and die. I know that sounds morose, but when every single day is a battle – burnout and exhaustion become overwhelming. I feel like the real me is dead and gone, and I wonder if this broken version of me is even worth the effort.

But I consistently fought through those negative feelings and persisted. I got out of bed each day, showered, got dressed, went to my job, did good work, cooked meals, tended to the house, took care of the dogs, and stayed in touch with family and friends. I tried to live out the actions of a real life, even if it often felt like a pointless charade. When you’re at the very bottom, all you can do is keep trying to pull yourself up and out of that pit!

I sought help with my mental health with both a therapist and medication. The medication didn’t help, but the therapist does.

I kept my body moving. I hiked almost 600 miles this year. I lifted weights over 100 days this year. I practiced yoga over 100 times. I rode my bike trainer 150 times. I’m grateful I had the ability and resilience to stay active. It was hard, but it made me feel closer to the real me. I have faith that putting in this work strengthens my bones, helps my immune system, and gives me a mental health boost.

I traveled – to Maine, West Virginia, and North Carolina. I couldn’t fly or travel internationally, so I did what I could. The trips were all wonderful, but the two-week trip to coastal Maine/Acadia was incredibly restorative. I swam in the frigid Atlantic, climbed pink granite mountains, ate all the lobster and ice cream, and marveled at the Milky Way over the ocean. At the beginning of 2024, I wasn’t sure if I would be able to travel at all, so these three summer trips were a gift. There were a lot of physical struggles on those trips, but I’m glad I pushed through and had the experiences I had.

I never gave up on my search for answers, despite grueling, often humiliating appointments with well-meaning, but clueless, healthcare providers. I persevered until I found the right doctor. It was a marathon and full-time job to get there, but I did it! My tenacity and self-advocacy led me to an actual diagnosis of my illness. Having pemphigus absolutely sucks, but at least I know what I’m facing now. Knowledge is power, right?

I became a little more patient and a lot more brave. While I might never thrive in the unknowns and waiting periods, I can survive and find a way to get through. I also can do incredibly hard things! I don’t flinch at needles anymore. I’ll ask the difficult questions that might have scary answers. I don’t stick my head in the sand and avoid making unpleasant doctor’s appointments. I can sit calmly in an infusion chair for all-day treatments. I face everything head on. I may not be fearless, but I definitely fear less than I used to.

Hope for the New Year

Come on 2025 – be better… please! I visualize myself reaching remission. I see myself rejoining the world when my immune system rebounds.

I want to be happy again. I want to give my husband the gift of a normal wife again. I want my parents to stop worrying about me. I want to feel unbroken and worthwhile. I want to feel human again.

Some of these things are in my control, some are not – but I hope for all of these things.