I’ve been having mostly good days lately.

My pemphigus symptoms are much improved thanks to the daily high doses of prednisone I take. I can eat almost all foods again. I feel good overall – no fatigue or pain. I’m able to hike, cook, and work. The odds of reaching remission (even if it’s likely temporary) are definitely in my favor.

I have many reasons to be grateful.

But, honestly, some days I am still fiercely angry. Other days, I’m just overwhelmed with a tidal wave of grief. These days are tough. I feel broken and useless. I question my worth as a person. Am I even a person anymore or am I just this disease now?

Bad Day Triggers

Bad days seem to be triggered whenever I have to confront the toll of my disease head on. I have tracked my mood, and I’ve learned that I have several specific bad day triggers.

When It’s Treatment Day

Knowing that I have to travel out-of-state to a specialty hospital for all-day IV infusion treatments is a reality check. It reminds me that my illness is permanent and life-threatening. Having all the B-cells in my immune system destroyed is kind of a big deal.

On the days leading up to our UNC trips, I usually feel weepy and overwhelmed. I don’t want to be a sick, disabled person who has to get weird medical treatments. I resent living in this body. I hate that I worked so hard to be healthy, and my body still failed me. I wonder if my life will ever feel easy and normal again.

When I Attend Support Group or Patient Education Events

Don’t get me wrong. I love and need my support group of peers and medical professionals. It’s been validating to share the experience with other people in the same boat, and I’m deeply appreciative of the medical professionals that have dedicated their careers to this weird, rare disease.

But at the same time, a lot of the personal accounts really hit home. Like other patients, I might have a long road ahead of me, too. It’s daunting to hear that most people I’ve met in support group have not had a fast and easy road to remission. It’s taken them years and second-line treatments in many cases.

Also, the presentations by medical professionals have forced me to confront that my pemphigus symptoms could still spread and become more severe in a process called epitope spreading. There isn’t a cure for pemphigus, so there’s really no finish line for me.

When I Feel Left Out

I don’t expect my friends and family to stand down and stand by while my ability to live fully is on pause. That would be crazy and selfish. But, being the flawed human I am, I’m often filled with grief and jealousy when the world around me is full of other people’s exciting plans and fun adventures.

When I see a friend go with others to a social event we used to do together, I’m sad. When I see my basketball seats on TV with strangers sitting in them, I’m angry. Those are MY seats! When a friend plans a trip abroad that we were supposed to go on together, I’m jealous.

When I developed pemphigus, I had just received my first passport ever. I was planning on going to Greece – the flight was booked and everything. Now I wonder if I’ll ever even get my passport stamped.

When I Have to Give Up a Dream

I had planned on retiring in the near future. I’d met with the retirement specialist and everything. For 30 years, I worked hard and saved carefully. I had mapped out a plan to retire from my state job and pick up an easy 15-20 hour part-time gig to supplement my pension. Now that I’m severely immune compromised and can’t get a part-time job outside the home, my retirement plans are on indefinite hold. Whenever I have a tough or stressful day at work now, I feel extra grouchy.

I also feel envy when I see others in my circle enjoying their retirement or counting down to their last day at work. I was supposed to be winding down my professional life, too! I was so close, I could have touched it.

Being Positive Every Day is not Realistic

Most days, I can push the sadness and anger to the sidelines. I can be happy and hopeful most of the time. I can embrace and enjoy the things I can do. But let’s be honest – my life as I knew it is over and I am forever changed.

Bad days and bad moods are inevitable for a person in my situation.

The disease and the medications I must take to treat it will continue to damage my body. The prednisone eats my bones and makes me prone to infection. It puts me at risk of stomach ulcers, high blood pressure, and diabetes.

The rituximab robs me of a functional immune system for almost 18 months each time I need it.

Medications that suppress the immune system may make people more prone to cancer down the road. But because pemphigus has an almost 100% fatality rate without treatment, I have little choice on how to manage my disease.

Even when I reach remission, pemphigus will always be a specter in looming in my rearview mirror, just waiting to catch me again.

It’s hard to be aware of all these tough realities, but still constantly hold my spirit in light, hope, and positivity.

I think the best I can do is be aware of my ‘bad day triggers’ and just let myself have the negative feelings, knowing they will pass.

I am writing today’s post from my infusion chair at UNC-CH Medical Center. Tonight when I get back to our AirBnB, I’ll be virtually attending my patient support group meeting for December. It’s a heavy load to take in on one day, but tomorrow will be better!