Pemphigus Foliaceus

So, nothing has really rocked my world in a while, or at least I haven't felt the need to write a blog on a topic in a very very very....long while. So now that we're over the awkward introduction, I'm here to talk about something new that has definitely rocked my world... And since it seems to be rare, I don't have a lot of sources where I can discuss my issue in depth, so why not talk to a blank wall? :P At least in this regard I would have a way to voice my concerns, opinions and record my disease track.

So as of April 9th, 2012 I was diagnosed with Pemphigus Foliaceous (from now on referred to as PF). I started noticing these scars since... about August/September 2011, this is a rough estimate because I am terrible with dates which is completely why I should probably keep track of these things more often. So I saw a doctor, because I needed a check up anyways, but more so because I thought this was a rash that would go away, and since it didn't, I saw a doctor. She had no clue what it was, thought it was a rash as well, and suggested I see a dermatologist. I tried to contact a dermatologist at a large hospital, but was told I probably won't get in until December/January. It was around October/November at this time, and I'm just thinking "I could die before someone sees me, thanks a lot." (and this was before knowing the seriousness of some forms of Pemphigus). So I kept calling around until I got into contact with a small "clinic" (not sure what to call it), who said I could come in the next day. Awesome! I'm there! I'm impulsive and like answers right away (though I'm not necessarily one to give answers right away). So I go in, and he has no idea what it is either. He takes a biopsy (ouch!), and after a week or so I return for still inconclusive results, but narrowed down to four things. So he starts me on prednisone and reading the side effects were scary, but I took it. When I discovered that people take 100mg of this stuff and I was only on 20mg, it felt like a walk in the park. After a couple months of this prednisone and getting down to 5mg, to have an irritated tattoo (gotten in January), and still more blisters, he referred me off to another physician who was more specialized and had access to better testing tools. This was the beginning of April. He takes another biopsy (this was not painful!), and I get stitch. When I return I'm confirmed of my diagnosis of pemphigus (yay?), put on Dapsone, and Prednisone with Vitamin D3 and Calcium. So every morning I take 4 pills... I'll get into the "luxuries" of having an autoimmune disease later.

What is Pemphigus?
Pemphigus is a group of rare autoimmune diseases that cause blisters. There are several types of Pemphigus, but the two main ones are:
Pemphigus Vulgaris (PV) is the most commonly diagnosed and the most painful. Sores can and usually do involve the mucous membranes (mouth, throat, etc.
Pemphigus Foliaceous (PF) does not usually attack mucous membranes and the blisters are usually superficial and itchy.
Pemphigus is not contagious, it just looks very bad...

www.pemphigus.org is a great resource if anyone is interested in depth about more information. They have a lot of great information.

My (non)Luxuries
So, before I was diagnosed with this...disease, I could wake up late and skip breakfast, shower for ever, etc.
Since I have to take medication in the morning, skipping breakfast is not an option. I have to eat something, and with taking four pills, I might as well just eat a full breakfast because personally I have to have something solid go down my throat after each pill. I might get over that, but for now I can't just take pills back to back.

As for dressing, I can't wear whatever I want. At least I choose not to. I have to cover my back up because that's where most of my scars are, and I'm ashamed to expose them. So certain dresses I can't wear without a  sweater or something to go over it. So much for me getting over my insecurity of exposing my back before this, now it's even worse, lol. It's also extended to my shoulders, so if I have an open sore surrounded by these dark spots (or just the spots themselves!) I have to choose something with sleeves/longer sleeves. I used to be a cutter when I was younger, and having to cover up those voluntary scars is not as annoying as having to cover up things I have no control over (yet).

Also, being intimate can be a touchy topic. If I were married, fine whatever, but I don't even have a boyfriend, so trying to explain why my face, neck, back, etc., looks like someone put their cigarette out on me can be annoying. But luckily I'm not even dating frequently or if at all really. But to get intimate with someone can be hard if you are still self-conscious. I'm going from pretty much flawless skin to...this.

If you are not a makeup person, you may become one after because of the attempt to cover up some of the scars and appear presentable. I've thought about it, but I'm still kind of reluctant.


For now I'm going to cut this short, and attempt to get back to this later but I really did want to start getting all of this out.