IT HAPPENED TO ME: I Was Diagnosed with an Autoimmune Disease That Deformed My Fingers

It took years for me to find something that put my acropustulosis in remission, and it's not without major risk.
Publish date:
August 8, 2016
nails, bands, skin, medication, psoriasis, autoimmune disease, Acropustulosis

A few years ago, I was sitting at my swanky neighborhood bar in Germantown, a section of Nashville on the up and up. I had been grandfathered into the affordable-housing complex amongst the herds of hipsters and factory-renovated million-dollar condos, This night, I ventured outside my cardboard walls to meet my friend Katherine for a glass of wine. It was close to closing time, and a slim, dark-haired waitress with thick-rimmed glasses and a button-down, fitted flannel was just getting off her shift. She sat down next to me and engaged in conversation.

"What happened to your fingers?" she immediately asked.

I had been wearing a very stylish skin-toned style of Band-Aid for about 10 years. I get asked this question a lot, so I gave her my automated CliffsNotes response: "I have a rare form of psoriasis, and the Band-Aids protect them."

I hate this question because it's usually followed by a string of predictable additional questions or perceived bits of brilliant advice that I just don't care to have anymore. They usually assume that I've never been to a doctor or haven't tried everything under the sun to cure myself. I braced for an interrogation with another swig of wine.

"Oh my god," she continued, "how do you masturbate?"

Katherine almost fell off her barstool, but I was filled with joy over getting a question I normally don't hear. I was so tired of having the same damn conversation with strangers about my disease.

"Thank you," I replied with a sincerely enthusiastic grin. "I am happy to answer your question."

I won't go into detail about how I masturbate, but I will tell you more about my condition — basically, answers to the questions I always get asked.

About 10 years ago, I joined a very small percentage of the population who are diagnosed with a very rare and painful autoimmune disease that affects nail beds and fingers. I wear Band-Aids from knuckle to fingertip. It started on just one digit; then it became two; then I was told by one of the best specialized dermatologists in the country that it wouldn't spread beyond three. But then it became four, and with the fourth, it eventually spreading halfway down one side. Both of my pointer fingers became infected, as well as both of my middle fingers.

The official name of my disease is acropustulosis. It's in the psoriasis family and closely related to pustular psoriasis, but it's much more localized and a lot more stubborn to treat.

It hurts to play my guitar, reach into my purse, shower, wash dishes (water is the enemy), slightly catch or even tap my fingers on any sort of hard surface including door handles and bags, eat a hamburger, make a bed, cut fruit, sit still, sleep — all kinds of daily activities we take for granted. It hurts to do everything. There are a whole lotta nerves in your fingers, and you probably use them more than any other part of your body. There's not much you can do to avoid their use, and even if you can, it still hurts.

I learned to play guitar through the pain, and my bandmates usually understand when I hit a wrong note if a Band-Aid gets caught under a string. I'm in constant, throbbing pain, and I have moments when I would rather chop my fingers off until I remember it would probably just reappear on the stubs.

Underneath the Band-Aids, it looks like zombie fingers. You've seen the movies and TV shows — people walking around with green dead skin falling off their bodies. It looks like that. But only on my fingers. Additionally, little pustules made up of white blood cells form and surface under the skin and nail beds, then burst. New pustules cycle underneath that and repeat. This builds up in my nail beds, which often get infected, bleed or flake off, deforming my fingers and nails.

The Band-Aids act as another layer of skin, keeping infection away, and keeping my nails from falling off. Changing the bandages daily is about as much fun as waxing your bikini area. They provide pressure, which helps with the pain, along with a large supply of ibuprofen I carry with me at all times to aid inflammation.

You can go into remission, but there is no cure for acropustulosis. Some people with psoriasis have positive results with topical treatments and diet, but acropustulosis is a stubborn jerk. Treatments I've been on include months of UV light therapy, steroids and creams, non-western medicine including every supplement you can think of, endless hours of every form of yoga and meditation, and even soaking my fingers in boric acid. Nothing worked.

Changing your diet can help certain kinds of psoriasis, and perhaps some people have results with acropustulosis, but I am not one of these people. I went gluten-free and dairy-free for five years, as well as sugar-free and vegan for some of that time. I've tried being oil-free, egg-free, alcohol-free, grain-free, corn-free, and free of other red-flag foods for months at a time. No improvement.

Because it's autoimmune, it's not contagious. My white blood cells think there's something wrong in my body and attack it. Because there is actually nothing wrong, it ends up picking on something at random to damage — in my case, healthy finger skin.

Beyond the pain, conversations with people who try to fix me bother me the most. I hear a lot of "There has to be a cure!" Well, no, there doesn't, and there isn't one hiding under the couch. My rare form of psoriasis is one of the most stubborn on record. I've tried whatever you're about to suggest. I don't want to hear about how a chiropractor cured your cousin's eczema.

Often, I am made to feel like this disease is my fault, like I am not doing enough, like I don't know what I am talking about, or like I did something wrong to "catch" such a thing. I can hear the judgment in peoples voices and see it in their faces.

I went five years before I got a diagnosis. I heard that it could be everything from fungus to my personal favorite, "herpes of the finger." I've lost count of the amount of doctors I've seen, both traditional and alternative. I've had nurses say things like, "You're lucky it's not that bad because it's so localized," then apologize profusely after removing my bandages to reveal the horror underneath. I recently had a doctor take up 10 minutes of my exam to lecture me about my personal decision to wait to go on biologics; he then ran out of time before he could answer my questions.

You've probably seen TV commercials for a drug called Humira. I've been aware of the positive results people can have on this biologic, but I've been terrified to pull the trigger because of the side effects I might have to endure. To rebut my doctor's lecture, "Why did you wait so long to go on biologics?" I wanted to try everything else first. They can be really intense, with one of the side effects being lymphoma, a cancer my mom survived twice. Why would I increase my chances of something life-threatening that I am already at risk for? Humira suppresses your immune system to stop overactive white blood cells from attacking your healthy organs, sometimes leaving it too weak to fight off other diseases. Additionally, it's a very expensive drug that insurance companies don't like to cover.

Luckily, I'm a starving artist, so they granted me access to the patient-assistance program for the first few months. I was grateful and terrified at the same time. Aside from the known and surprise side effects, I wasn't sure if it would even work. It would either cause relief, get worse, do nothing, or get worse before it gets better. They've seen it all. But with the help of my very supportive mother and my awesome nurse, Kia, we decided that it was getting worse anyway, so I might as well give it a shot. Literally. I took my first injection on February 11, 2016.

My fingers cleared up by 80 percent in two days. Kia said she has never seen it work that fast before. After a week, the nails started to grow back. Today, they are 100 percent clear from pustules, only have trace amounts of redness and tenderness, and the nails are even starting to look normal again.

Sometimes a new pustule shows its face, but the next injection seems to take care of that. I take fish oil, probiotics, vitamins A, B, D, and E, and zinc to combat side effects. I am more susceptible to colds and sinus infections, but I haven't been sick yet. I do experience extreme fatigue, but I'm even starting to work through that. I have a lot of unexplained bruising on my legs, but all of my blood levels — iron, vitamin D, thyroid, etc. — are healthy.

I am finding things to do every day that are like brand-new experiences all over again. I can swim, run my fingers through my hair, eat a hamburger and let the juices drip down my hands, and thoroughly wash them. I can make a bed painlessly, button my pants, type with all of my fingers on a keyboard (though I'm still re-training my brain to do that), cut onions and avocado without gloves on, and manicure my hands.

Intimacy isn't embarrassing anymore. I can go on a date and hold someone's hand without caution. I can masturbate! I can have normal conversations with strangers. And most importantly to me, my guitar-playing has improved significantly. I'd say my life has improved significantly. I'm a bit worried about future side effects or the disease coming back or in other forms, but I feel ready to notice symptoms and treat anything that may arise.

Touring with my band full-time has become interesting considering I have to keep the medication refrigerated, but ice packs help on the road, and the inconvenience is well worth it. I'm also a bit concerned about affording to stay on the drug, since I will have to be on it for the rest of my life. But the pharmaceutical company and my doctor's office have both been very active in helping me get the financial assistance needed.

I'm grateful for the long talks I have with my friends who have autoimmune and other uncommon diseases. We're all here for each other. And ultimately, it's music that keeps me going.

It took me a long time to open up about this, and I've never posted anything about my disease until recently; even now, I usually only talk about it if asked. But now that I'm in remission, the timing seems right to open up about my acropustulosis.

Who knows what tomorrow will bring? But today, I'll live my life to the fullest.