A few years ago I was sitting at my swanky neighborhood bar in Germantown, a section of Nashville on the up and up. Complete with zombie herds of hipsters and factory renovated million dollar condos, I was grandfathered into the afforadble housing complex. This night, I ventured outside my cardboard walls to meet my friend Katrina for a glass of wine. It was close to closing time. 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 the very stylish skin toned bandaid brand 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 bandaids protect them.” I hate this question because it’s usually followed by a string of predictable interrogations 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 what I knew was coming next with another swig of wine. “Oh,” she continued, “My God…how do you masterbate?”
Katrina almost fell off her bar stool but I filled with joy. 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.” The rest of this blog isn’t going to be about how I masterbate. Sorry. Instead, I will answer all of the other questions that I hate. Because, and here’s the good news, I’m not wearing bandaids anymore.
About 10 years ago, I became a very small percentantage of the population diagnosed with a very rare and very painful auto immune disease that effects my nail beds and fingers. I wear band-aids covering from knuckle to fingertip, which started on just one digit, then became two, then I was told by one of the best specialized dermatologists in the country that it wouldn’t spread beyond three. Then four – with the fourth eventually spreading halfway down one side. Both of my pointer fingers became infected, and as natures cruel joke, both of my middle fingers as well. The official name of my disease is Acropustulosis. It is in the psoriasis family and closely related to Pustular Psoriasis, but much more localized and a lot more stubborn to treat. It took me a long time to want to open up about this because of all of the reasons listed above and more that I’ll get to later. I’ve never posted anything about my disease on Facebook until now and I usually only talk about it if asked. But now that I’m finally in remission, the timing seems right. So, I am going to use this moment to attempt to answer everything. Staring with the most common question.
Does it hurt to play guitar? Yes. 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 and all kinds of daily activities we take for granted. It hurts to do everything. There’s only one thing I could do: Do everything. There’s 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 then, it still hurts. I learned to play guitar through the pain and my band mates usually understand when I hit a wrong note if a band-aid gets caught under a string (the ones I’m still playing with, anyway – both band mates and fingers.) I am mostly in constant throbbing pain and would probably rather chop my fingers off if I didn’t think it would just re-appear on the stubs (ew).
Is there a cure? No. You can go into remission but there is no cure. Some people with generic psoriasis have positive results with topical treatments and diet (see below) 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 (yes, even that one), endless hours of every form of yoga, meditation and even as far as soaking my fingers in boric acid. Nothing worked. Not even by a little bit. My doctor confirmed my suspician that biologics might be the only drug to provide results in my rare case, but I’ll get back to that later.
Does diet help? No. 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 5 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 other foods found with red flags in an allergy test free for months at a time. The improvement was always zero.
What does it look like? Like a zombie’s fingers. You’ve seen the movies and TV shows. Those guys 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 infects, bleeds or flakes off, deforming my fingers and nails. The band-aids act as another layer of skin, keeping outside infection away, and well, keeping my nails from falling off. Changing the bandages daily is about as much fun as waxing your bikini line. 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.
Is it contagious? No. It is autoimmune. Wincing away when I reveal my hands doesn’t make me feel good. In fact, you shouldn’t do that to anyone, ever. Here’s what happens. My white blood cells think there is something wrong with something in my body and attacks it. Because there is actually nothing wrong, it ends up picking on something at random to damange, which in my case, is healthy skin. There are over 80 documented auto immune diseases and we don’t exactly know why or where they come from, but we do know they can be triggered by stress. Some of the treatments are similar for different cases. For example, biologics can be used for both psoriasis and Crohn’s disease, but not ITP (my sister has ITP…but that’s a story for another day). If you want to know more about autoimmune diseases, you can find a wealth of information on the interwebs. New research appears daily.
What is the most annoying or frustrating part of having Acropustulosis? People who aren’t doctors, and even some people who are doctors, trying to fix me. Beyond the pain, these convserations bother me the most. I touched on this earlier, but here is why. First of all, there really is no cure. Relief or remission, yes. Cure, no. I hear a lot of this: “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. Your witch doctor can’t fix me and I’ve tried whatever you re about to suggest. I’ve lost count of the amount of doctors I’ve seen, both traditional and non-traditional. 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 am often 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 judgement in peoples voices and see it in their faces. It doesn’t make me feel good. If you have any kind of condition, you may relate to this. 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 to answer my questions that mattered. Now you know why I don’t usually open up. I will if asked, but even then, I keep it short and walk away to avoid hearing about how Chiropractic cured your cousins eczema. That is not what I have.
So now you know everything. I went 5 years without a diagnosis at all. I heard things from fungus to my personal favorite, herpes of the finger. I will always be grateful for my dear friend and family physician assistant, Dr. Adam Schwartz, for finally giving me the official diagnosis that would lead me to the long windy road of treatment.
Are you ready for the good stuff? You’ve probably seen TV commercials for a drug called Humira. The one with the 10,000 side effect possibilities they vomit out at the end. I’ve been aware of the positive results people can have on Humira but I’ve been terrified to pull the trigger because of what I might catch in its place. To rebut my doctor’s lecture, “Why did you wait so long to go on Biologics?” I wanted to try everything else first. You’ve heard me reference biologics a few times, and this is why. 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 works to suppress your immune system to block overactive white blood cells from attacking healthy your organs. This leaves your immune system weak to fight off other diseases. Additionally, Humira is a VERY expensive drug that insurance companies don’t like to cover. Luckily, I am a starving artist, so they granted me 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. My options were this: it would 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 may as well give it a shot. Literally. I took my first injection on February 11th, 2016.
Here’s the result: My fingers cleared up by 80% 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% clear from pustules, only have trace amounts of redness and tenderness, and the nails are even starting to normal again. Sometimes a new pustle shows his face, but the next injection seems to take care of that. I take fish oil, probiotics, zinc, vitamins A, B, D, E and zinc to combat side effects. I am more suseptable to colds and sinus infections but I haven’t been sick yet. I do experience extreme fatigue, but I am 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 so we’re not concerned. I am finding new things everyday that are like brand new experiences all over again. I can swim, run my fingers through my hair, eat a hamburger, let the juices drip down my hands, and throughly 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 embarassing anymore. I can go on a date and hold someones hand without caution. I can masturbate! I can have normal conversations with strangers. Most importantly, my guitar playing has improved by about 15-20%. My life has improved by about 25-30%. I am a bit worried about future side effects or the disease coming back or in other forms, but I feel ready and prepared to catch and treat anything.
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 am 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 Humira and my doctors office have been very active in helping me get the financial assistance needed. I am grateful for the long talks I have with my friends with autoimmune and other uncommon diseases. Sometimes theirs are worse then mine, but they never make me feel guilty about that. We are all here for each other just the same, relatively. I am thankful for Humira, my doctors, nurses, family, friends, and my band mate/brother/business partner/best friend, Edward Williams, for being by my side no matter what on our journey that is Whitherward. Ultimately, it’s music that keeps me going. You can follow our crazy tour life at the links below. Every little like, listen and download goes a long way! #whitherwardontour.
Who knows what tomorrow will bring. But today, I’ll live it to the fullest. I’d like to thank my family, friends, doctors, nurses, and fans for helping me see this through. Additionally, those who continue to support our music…you know who you are, and I love you.
And that, my friends, is how to masturbate.
Ashley E. Norton