Out of the few of you who read this, most will not finish. This has the potential of being a little too long and a little too dry. You are forewarned.
When I first started writing on this blog, it was just a place for me to write. Nobody knew it existed, so nobody read it. Tonight, I just need a place to write. Unfortunately, my medium is now public. So be it. I must not be that private person most of us think we are. Or maybe I just don't care who knows. Or maybe I want you to know, so I don't have to worry about what you are thinking when you take that second, or third, glance. Yes. I see it when you do that.
In the summer, I was diagnosed with Follicular Mucinosis.
Say what?
Follicular mucinosis (FM) is a rare dermatosis characterized by mucin deposits in the pilosebaceous units. It is divided into a primary-benign type and a secondary type associated mostly with lymphomas. No standard effective therapy is available for the primary FM while in the secondary form treatment is aimed against the underlying disease.
So what does that mean?
Well, there's a few things that should jump out at you, the first being it is rare. Yipee for me. I feel like I won the lottery. Second, is that nasty little word lymphomas. Although there is not a lot of data out there, I read where it turns into cancer 40% of the time. No worries, the mortality rate is pretty damn low. The last thing that should have jumped out at you was there is no standard effective therapy. I've read where Corticosteroids, dapsone, mepacrimine, interferons and superficial X-ray have all been used. Let's not forget photodynamic therapy and interferon alpha-2b at a dose of 6 million U subcutaneously three times a week, and acitretin 35 mg/day, for 6 months.
Well, there's a few things that should jump out at you, the first being it is rare. Yipee for me. I feel like I won the lottery. Second, is that nasty little word lymphomas. Although there is not a lot of data out there, I read where it turns into cancer 40% of the time. No worries, the mortality rate is pretty damn low. The last thing that should have jumped out at you was there is no standard effective therapy. I've read where Corticosteroids, dapsone, mepacrimine, interferons and superficial X-ray have all been used. Let's not forget photodynamic therapy and interferon alpha-2b at a dose of 6 million U subcutaneously three times a week, and acitretin 35 mg/day, for 6 months.
So imagine my surprise when I finally went to a dertamtologist and he told me the good news after getting the results of a biopsy. The way he stuttered and stammered with the word lymphoma was really encouraging. It sounded like the confidence President Bush excudes in a briefing on the economy.
In case you have not figured it out yet, the f'ing bumps on my face are follicular mucinosis. Just for the dummies out there thinking this was something hidden from view.
So every morning when I look in the mirror to shave my face I here James say, "That was just your life." Ok. Not really, but you get the point. No? FFS. Let me put it another way. I'm reminded of my current situation all of the time. Getting out of the shower, brushing my teeth, walking past a mirror, seeing my reflection in the mirror when I change lanes, when somebody takes that second glance, when their eyes drift to my face instead of my f'ing eyes when talking to me.
When I go to sleep at night.
When I give my daughter her very own Taylor Swift CD, and she says, "Thank you, Daddy", with all the sincerity only an innocent child can have.
Now do you get it?
Boo f'ing hoo!! Not really. I'm just framing this conversation for you.
When I was first told, I was not that bothered by it. As the prescriptions have not worked, and the stares have continued, I find myself thinking about it more and more. As I research more, and see pictures of how unpleasant it could become, how unpleasant treatment could be... it weighs on you, is all I'm saying. Surprisingly. It weighs on me. When I least expect it, it weighs on me. I am surprised at my inability to compartmentalize this in my brain. Afterall, it is not that bad. I mean, come on. It could be much worse. So I do not mean to complain.
I thought if I wrote about it, then I could have my little moment of feeling sorry for myself. My own little woe is me time. And then move on. Because it is not that bad. All I have are bumps on my face, and a few stares. Even a few questions now and then, a biopsy or two every 2-3 months just to make sure Mr. Lymphoma has not decided to join the party, and a band aid on the face for a week.
Tick tock. Time to shove this into the corner of my brain.
