Why couldn't a butterfly rash look like this?

UPDATE 13/12/12  A lot of people are finding this post looking for images of butterfly rashes (malar/lupus rash.) You'll find a picture of me with a real lupus butterfly rash photo here.

Those of familiar with autoimmune disorders will know from the title where this post is going. For those of you who don’t – Butterfly rash = lupus.

For a while I’ve been getting a whole host of symptoms that couldn’t be explained by any of my existing conditions, one of them being a rash across my cheeks, known as a malar or butterfly rash.

I think I’d been a little bit in denial about the new symptoms. I ignored a lot of things or dealt with them by not really dealing with them – for example, some of you will remember the day when I began to have a large amount of bleeding from my mouth. After spending some time spitting blood in the sink, I made an appointment with my dentist. Part of me (and many of my friends) knew very well that I should be seeing a doctor, not a dentist at this stage, but this was a convenient way for me to pretend I was dealing with the problem without really dealing with it. Incidentally, the same day I saw the dentist, I saw my dermatologist and when I mentioned in passing the rash on my face (which I didn’t have that day) she looked alarmed and asked if I’d been tested for lupus. I avoided that by saying yes, I had been tested for lupus and just didn’t mention that my last ANA test was seven years ago and it was positive. I convinced myself the face-rash was just the rash I get from sunlight (which in hindsight was slightly ridiculous, as a sunlight rash is also a symptom of lupus.)
 

Anyway, dentist noted I had a lot of inflammation and a very dry mouth and said he thought it was either an “autoimmune something” or a result of meds.

Skip forward a few months and new symptoms were becoming harder to ignore. Dry eyes were meaning I was getting vision problems, pins and needles in my hands and feet were making my walking a bit wonky-donkey, and my hands started turning blue when I got cold. I was covered with skin ulcers and blisters, most of which quickly became infected. I finally bit the bullet and went to the doctor.

I knew very well that my symptoms indicated lupus, but I avoided dealing with the problem by convincing myself it was sjogrens disease. Lupus and Sjogrens disease are actually very similar. There’s a huge overlap in the symptoms, though I believe the butterfly-rash and sunlight rash are more related to lupus.

A month ago I saw my rheumatologist. After listening to my list of symptoms, he told me they all fit with lupus. At that stage he thought it might drug induced lupus from my Psoriatic Arthritis medications.
 

On Thursday I saw my nurse. My bloods test showed quite clearly not drug induced lupus, but lupus lupus (SLE.) She went back over my notes and said she suspects I may have had it undiagnosed all along, which would explain why I’ve been so unwell and taken so long to respond to any medications.
 

I think the moral of the story here is if you’re getting sick, don’t ignore it. Pretending it wasn’t happening did not make the problem go away – in fact I just got sicker. I try not to play the “what if?” game. It’s hard when I look back on things and say “what if this had been picked up ten years ago?” but as one of my good friends pointed out today “better now than letting it progress for another ten years.”
 

I’ve been really scared this year. Scared by the new symptoms. Scared it might be something serious. Scared to get a diagnosis. Scared I might NOT get a diagnosis and just be left wondering.
 

Well – new symptoms are scary whether you acknowledge them or not. If it’s serious, it will still be serious whether you ignore it or not and in the end, a diagnosis is just one step closer to treatment.
 

Turns out treatment for me might be as simple as adding just one more drug. I’ll know more in the new year. In the mean time, if you’re worried about something – go to the doctor. You don’t want to be asking “what if?” a few years down the track.

Little Miss Autoimmune

Changing Goals (and some shameless self-promotion)

I first got sick when I was nine. Not really sure what my goals were back then. I seem to remember something about wanting to be the safety pack monitor and/or bell ringer.

I was 19 when I got really sick, and was diagnosed with Psoriatic Arthritis. I know what my goals were then. I was at drama school, I wanted to do another year there and then go on to film school. I wanted to be and actor and filmmaker.

It became clear to me that I was too sick to be able to go back to drama school (at least in part when they suggested to me I was too sick to come back!) For a while I continued pursuing the goal of working in acting and filmmaking. I continued making my own films, helping out my friends with acting in and editing their films, and did a lot of extra work in New Zealand TV programmes, commercials and films (if you watch King Kong really closely, you’ll see me running around and screaming in the background.)

I’m not sure when exactly it was that I realised this wasn’t working.

I know there was the time when I sat at the computer trying to edit my friend’s film, crying because my back hurt so much. And then the film after that when I couldn’t even finish the work on it.

There was the day after my final day on the King Kong set, where I lay flat on my back wondering if I was actually going to be able to get up ever again.

There was the play, where we had to re-choreography everything between the second and third show, because I had flared so badly I couldn’t do anything we’d planned anymore.

I don’t think there was a single moment, that meant change - just a slow realisation that my earlier goals weren’t right for me anymore.

Even before I got sick, I’d known I wasn’t totally happy with the way my life was going, but I wasn’t entirely sure why. As a teenager, I’d loved spending my time acting and filmmaking, but when I thought back on it I realised it wasn’t really the acting or filmmaking that I loved. What I loved was spending time coming up with a story for a sketch or a film, or a short soap opera competition and then seeing that come to life. I realised, what I really love is storytelling and the moment I figured that out, I realised I was a writer not an actor (strangely, the head tutor at drama school spent a large amount of his time telling me this!)

In a weird way, I’m glad I got really sick at the time I did. I *might* have had a successful acting career if I hadn’t. But I would have been seriously unhappy doing it. Most of what I remember from my acting days is feeling self-conscious (largely because the tutors kept telling me I was fat!) anxious, and not good enough. As a writer, I’ve seen myself improve. I’ve seen myself succeed. And I’ve never once had a pen tell me I was fat :-P

My point is, when you get sick sometimes your goals have to change, but the essence of them doesn’t. It doesn’t mean you can’t be an actor, if that is what you want. It just happened that for me, it turned out it wasn’t what I really wanted.

Now for the shameless self-promotion:

I’m now a published author!

If you have an ipad and a child (well... the child isn't really necessary) I think you should download this free app and buy some picture books, including "Aunt Kelly's Dog" and "Jenny No-Kicker's" written by me and illustrated by Ian Garmonsway. I will love you forever if you do :-)

Little Miss Autoimmune