This post is going to deviate slightly off the path of my normal blog posts, though I still believe it should be addressed. I'm going to share my experience with what the doctors think I had, and that is the skin disease PLEVA. There are going to be some images further into the post that may be unappealing to certain people, just as a warning before you continue.
First, I'll give you a little information on the disease. PLEVA, short for Pityriasis lichenoides et varioliformis acuta, is an autoimmune skin disease. This disease is categorized by lesions and blisters on the skin, which usually appear on the legs and trunk area. There is no known cause for PLEVA at this time, though there are many different methods to try and cure the disease. Because the disease is autoimmune, there is always a chance that it can come back later on.
Now, I will tell you my story. Around the beginning of August this year, I noticed a small red bump on my left leg. The bump looked like it had puss inside of it, so my initial thought was that it was a bug bite. It did not itch, and it did not hurt, but it was annoying having it there. So, I squeezed the bump and puss came out of it, and that was the end of that. About a week later however, I began to notice a little cluster surrounding the area of the original bump. This caused a red flag, and I decided to tell my mom about it. We had a few speculations of where these bumps could have came from. As a child, I was highly allergic to walnuts, so we wondered if maybe I could of used some sort of skin product that contained walnuts in it. Also, we have a bush outside of our house with mold on the leaves, it could've been possible that I rubbed up against that. We were not worried, but decided to keep an eye on the bumps.
Approx. a week after the first bump was noticed
The longer we watched it, the more it began to spread. The cluster had expanded, and now these bumps were beginning to turn into scabs. Some of the scabs began to scar, which lessened our worry slightly, because it seemed that whatever this was, it was healing on it's own. We decided that if it decided to spread even more, we would make an appointment with the dermatologist.
Bumps before they began to scab/scar, and bumps during the scabbing/scarring process
The condition worsened, and at a much faster pace than we imagined. My family and boyfriend were on vacation at the beach house, and each morning I woke up, there was a noticeable change in the bumps. We noticed that the days following when I went in the ocean, they seemed to look better, but in no way did it look like we didn't need to worry about it. My mom called the dermatologist on our third night at the beach, and scheduled an appointment for the day after we returned home.
Our dermatologist appointment was not what we expected it to be. The nurse came in the room, asked me some questions, and then told us that the doctor would be in shortly. We waited, and finally Dr. Bradshaw entered. He asked what we were in for, and I pulled up the leg of my pants to show him this:
Shortly after my appointment
Dr. Bradshaw's facial expression changed very quickly. You could see the confusion on his face. He began asking me questions.
"Have you gone on any hikes recently?"
"No."
"Are you using any different products?"
"No."
"Do you have any symptoms of a cold or flu?"
"No."
"Okay, I'm going to grab another doctor to take a look at it."
And with that, he left the room. My mom and I looked at each other, and all we could do was laugh. I've always been the kid to have weird medical problems, and apparently that followed me into adulthood. A few minutes later, another doctor entered the room, and began asking me a different series of questions, to which I similarly answered, "no." They left the room, and Dr. Bradshaw once again, returned with another doctor. This time, she did not ask me questions. Instead she looked at it closely with a magnifying glass, and began spouting off different conditions with very long names, and then finally she said, "PLEVA?" My doctor's face lit up, and he repeated her words, "PLEVA."
Dr. Bradshaw then began to brief my mom and I on what PLEVA was, and prescribed me with a strong steroid cream. He told me to keep applying this, and if it didn't start to heal, to give the office a call.
I got home and immediately applied the cream. Twice a day, I liberally applied the cream, never ever missing a day. Unfortunately, the condition did not get any better and began to spread to my other leg. We contacted the doctor, and made an appointment for the following week, about two weeks before my original routine check up. This is when I began to get discouraged. Self image and confidence is hard enough as an 18 year old girl, and when you add these gruesome lesions onto your legs, smack dab in the middle of summer, it makes the struggle to feel good about yourself even worse. I consider myself to be a tough person when it comes to things like this. I held it together for a long time, and had a very strong support system on my side. My boyfriend was a life saver during this time, kissing my legs, telling me he liked me better like this, that I looked camouflaged, anything to make me feel normal. The people who loved me unconditionally made it easy, it was the ones who didn't quite get it that made me break down.
Left leg full blown, and the beginning of the spread to my right
The first jab happened while at the beach with a guy friend and his cousins. We were laying out on our towels, drying off as we just got out of the water. I had mascara running down my face, so I made a joke and asked, "How do I look right now?" to which my guy friend responded with, "7. You'd be a 10 if it weren't for your legs." This hurt me, probably a lot more than he understood. Could these scabs on my legs really effect how pretty I was that much? Sure, it was a joke, but after the constant jokes from him, telling his cousins that I had Ebola, or that I had syphillis, it began to hurt me. I decided to just put it behind me, though, because it did not bother my boyfriend, and that's all that should matter.
About a week later, I attended a sleepover with a big group of my girlfriends. There are 13 girls in the group, and 11 of them attended the sleepover, making it a tight fit for everyone when looking for a spot to sleep. I asked a close friend of mine if she wanted to share an air mattress with me, to which she responded, "I don't want to sleep with you if I'm going to get your disease." My heart dropped, but I did my best to play it off, because I figured she was joking. But was she? The doctor specifically told me that this wasn't contagious, and when my friends asked me about it, I told them this straight away. I know these people weren't trying to hurt my feelings, but these constant "jokes" suddenly weren't funny to me anymore.
I went home the morning after that sleepover, went into my room, and broke down. Even writing this now makes me feel emotional, because I felt so helpless. Did they think it was my choice to have this happen to me? Did they think that making fun of me for it wouldn't hurt my feelings? Or was anyone even thinking about me at all? My family and boyfriend constantly tried to encourage me, but I was so broken at this point. The lesions began to get so bad that I didn't even take pictures anymore because I was disgusted with myself. I turned down so many opportunities, going to the beach, hanging out with people, etc. because I didn't want to show my legs. It was August in Southern California, there was no way I could get away with wearing an outfit that wouldn't expose this disgusting rash on my legs.
Time moved slow, but eventually the day of my appointment came. The nurse came in the room, and began taking pictures of my legs and stomach, where the lesions began to spread, and told us the doctor would be with us shortly. He came in the room knowing something was wrong because we called to schedule an earlier appointment. Again, I pulled up my pant leg and showed the doctor the awful condition this disease was now in. He explained that they were going to perform a biopsy to send into the lab, to classify exactly what this was. They were 90% sure it was PLEVA, but as doctors, you can never be too sure.
The word biopsy sent shivers down my spine. Since I was a kid, I have been terrified of needles. Every time I have needed to get my blood drawn, I have passed out. I informed my doctor of this, and he looked at me with a sincere and reassuring smile and told me, "I know you'll be just fine." They took me in a room, and performed the procedure. I only felt one prick of the needle that numbed my leg, and then could only feel Dr. Bradshaw and the nurses' fingers touching my leg. I was scared, but I was willing to do anything to figure out what this was, and make it go away. The doctor prescribed me on an antibiotic called doxycycline, and told me to take it two times a day for two weeks. After those two weeks, he wanted to see me again to get my stitches out, and reveal the results of the biopsy.
Bandage from stitches, with a slight view of my now infected right leg
I got home, and as you can guess, the first thing I did was take my antibiotics. I woke up the next morning, and immediately noticed a difference. Each day with the antibiotics, my condition slowly began to heal. I, and everyone else, were so relieved. My family and boyfriend knew how discouraged I had been about this, and to see me smiling, and feeling better about myself must of brought them a lot of peace.
Left leg, almost fully healed
We anticipated the appointment, as we wanted closure and reassurance that this was in fact PLEVA. Since it can come back, we needed to know in order to brace ourselves if the condition ever returned. I got my stitches out, and my mom, dad, and I were taken into a room with Dr. Bradshaw.
Dr. Bradshaw told us that the biopsy was inconclusive. He wasn't sure if it was because of testing error, but the results showed that it could have been either PLEVA, or a severe allergic reaction. He advised me to continue to take my medication, and that I had been heavy on his heart. I am so blessed that I got such a sincere doctor. He made the journey much less scary, and showed me that he truly cared about me getting better.
Since the biopsy was inconclusive, we are still unsure of exactly what my diagnoses is. The doctor was pretty confident that this was indeed a case of PLEVA, but we will never really know for sure.
My scars today (dark scar is from my biopsy)
I wrote this post to be both informative, and encouraging to anyone who can be going through something like this, or even just someone who is struggling with confidence issues in general. Nobody knows what another person is going through. Nobody knows how much their jokes can truly affect someone. I gave up. I let this disease take me over, I let it make me feel like I wasn't beautiful. I know it sounds cheesy, but beauty truly is skin deep. Personality shines through your skin, and makes you more alluring than big eyes or long, shiny hair ever could. Don't give up like I did. Don't let people tear you down, because they just don't get it, and probably never will. Everyone is beautiful in their own way, and I should have never let some scabs on my legs make me feel like I wasn't. Everything, with time, will get better. I say this to people anytime they are going through something hard. "Nothing would be thrown at you that you couldn't handle." And it's true. You can fight anything thrown your way. I love my scars, because they tell a story, and they tell people that I went through something and made it out alive.
If you're struggling with your image, the first solution is to believe that you are beautiful. Once you do that, nobody else's opinions will matter.
For more information on PLEVA, visit http://www.patient.co.uk/doctor/pityriasis-lichenoides
If you have any questions, or simply just need someone to talk to, please feel free to leave a comment, or email me at 17pagesemail@gmail.com
You're lovely, and you're beautiful. Don't ever forget that.
