If everything goes as planned, at this time next week – I will be DONE with my first round of rituximab infusions! I’m looking forward to starting treatment and hopefully feeling better.

But, right now – I’m also having lots of complex feelings about both my disease and the upcoming treatment. It feels like such a rocky path forward into the unknown!

These worries feel complicated!

I’m not worried about the infusion process itself. I do feel a little squeamish about having the IV hooked up to my arm all day, but I can set that worry aside pretty easily. It will be awkward, but I’ll get through it.

I’m also not feeling too worried about the rituximab itself. The other patients and doctors that I’ve talked to say the medication is not that harsh and most people tolerate it well. Unless something unusual happens, I shouldn’t have any immediate serious side effects.

For the first few weeks after my pemphigus diagnosis, I was feeling upbeat. I had answers and things were going in the right direction. I thought I’d coast up to treatment feeling nothing but hope and positivity.

But suddenly this week, I’ve found myself feeling really sad and panicky. I’ve felt my mood spiral downward and I’ve shed my share of tears. I’ve been trying to analyze and understand these feelings. Why now, when I’m so close to the treatments that are supposedly going to make me feel better?

I think starting treatment feels like the ultimate acceptance that I’m not going to magically get better. This disease is my reality. It’s admitting that I can’t cure pemphigus by making healthy life choices. I’m realizing that I’m not in control of my health anymore – I never actually was. I’m also deeply sad that I’m now a person with a chronic disease. It sucks to be sick, especially when I spent my entire life considering good health to be a cornerstone of my identity.

I’ve been waking up each day feeling like I’m trapped in a broken body. Hopefully, sometime down the road, my body and I can make peace again. I’m not ready yet.

The other thing I’m struggling with is what my future looks like after rituximab. For the first six months, I’ll be severely immune-compromised. After that, my immune system will slowly rebuild between months 6 and 18. It’s a long process!

I’ll be working from home. My husband and I are skipping family holidays and all kinds of social gatherings. We’ve sold our amazing fourth row college basketball season tickets. We’re essentially being put into our own private pandemic-level lockdown again.

I’m ok with six months – but what happens if I need more rounds of rituximab? Will I ever have an intact immune system again? Will I ever be able to go on that trip to Greece that I planned before I got sick? Will my friends forget me? Will I end up in the hospital with some weird infection that my broken body just can’t fight? Will I ever have any kind of normal life again?

The more I learn about pemphigus, the more I understand that it is going make waves across the rest of my life.

It’s a ton to process and it feels very overwhelming at times.

I’m trying to remind myself:

• To take things one day at a time
• To not predict the future – it’s futile to try
• To have hope that science continues to progress
• To have faith in my doctors
• To believe that people will continue to love me despite my brokenness
• To acknowledge that life is a sweet gift because it is so fleeting
  (thank you, Emily Dickinson!)