You know the House quote. I know the House quote. We all know the House quote. Any time someone mentions the word “Lupus” someone else hilariously responds by saying “It’s never Lupus!” Only, in real life, it’s sometimes Lupus. I would know. I was diagnosed with it on Wednesday. I really wanted to respond to the specialist’s diagnosis by throwing this quote in her face and chuckling, but she didn’t seem like someone who would find that humorous. Years ago, when another physician toyed with the idea of me having Lupus, I pulled the House quote out of my hat and he just looked at me oddly and responded by saying “Excuse me? Lots of people have Lupus.” Tough crowd.
It’s probably weird that my first reaction to being told I have Lupus was to think of something funny, but honestly I’m just so damn relieved that a doctor spent more than 10 minutes discussing my case with me, actually listened to everything I had to say, took the time to go off and review my medical history, thoroughly examined me, and then gave me a real diagnosis. THANK YOU. It only took me about 7 years to get it.
Now don’t get me wrong, having Lupus is definitely no walk in the park (I don’t think Newfoundland even has a Walk for Lupus event), and not something one would normally rejoice about after being diagnosed with it, but I’m just glad to have a name for the thing that has been making me so sick all these years. Now it has a name, and a face, and other people who live with the same illness who I can talk to about my ups and downs. How wonderful is that?! When you compare that to spending years and years knowing something is very wrong, having no clue what exactly it is, being put on tons of medications you are uncomfortable with, and not really knowing where to turn for help, I say give me the lupus! It’s quite lonely being sick and not knowing why. At least now I can probably join a club or something (even though I’m far too anti-social for that and I will probably just keep binge-watching The Office on Netflix by myself as a form of therapy just like before),
For those of you who know little about Lupus other than the House quote or the fact that Selena Gomez has it, I’ll give you a brief overview.
Let’s Learn About Lupus!
(I love alliteration)
1. Lupus is an autoimmune disease. That means that your immune system attacks healthy cells in your body because it’s probably bored and has nothing better to do.
2. Lupus is also considered a connective tissue disorder, because it damages the connective tissue in your body (basically the glue that keeps all of your joints together).
3. Lupus can affect joints, muscles, skin, and any organs like the lungs or kidneys. It can also cause extreme fatigue.
4. Like most autoimmune diseases, everyone is affected differently. One person can be very ill from Lupus because it affects their organs, while another person may only notice problems with their joints and skin.
5. Lupus patients can have flares (which means their symptoms become active) and periods of remission (when their symptoms become inactive). Flares can be triggered by too much exposure to sunlight, stress, a virus, and in my case having too much fun while traveling.
6. There is no cure for Lupus, but there are lots of treatments that can help people live a relatively normal life with the disease.
7. The word Lupus comes from the Latin word “wolf.” The disease was named in the 13th century because discoid Lupus caused facial lesions reminiscent to a wolf’s bite. I’m just going to go ahead and interpret that to mean that I am turning into a werewolf, which is pretty cool.
Lupus affects me in a number of ways, but I won’t bore you with all the details (because they would probably take up an entire notebook and no one needs that). In short, I have had joint and muscle problems for years, at times quite severe. I was also told on Wednesday that I have hypermobile joints because of my connective tissue, which means that my joints extend further than they are supposed to which causes a lot of pain (but it makes me really good at thumb wrestling so it mostly balances itself out). I suffer from fatigue. Weird things happen to my immune system like that 2 month period when I kept going into anaphylactic shock over a nut allergy that disappeared. I’m very susceptible to getting sick, for instance I currently have a bad bout of pneumonia. Basically, my immune system is being a total diva.
Lupus isn’t fun. In the 3 days that I’ve “officially” had it I have been pretty sick with pneumonia, but there is also a huge weight off of my shoulders. I know what is wrong with me, and I’m on a medication for it. The medication that the specialist placed me on isn’t even a steroid, which is a huge bonus. Also it only cost me 11 dollars for a 3 month supply. So far Lupus is affordable!
It feels really strange to talk about Lupus like this, instead of having to say “my un-nameable chronic illness makes me feel this way,” I can say “blame Lupus for that one!” I kind of want to get a t-shirt that says “I have Lupus!” or shout it from the rooftops. That might seem a bit weird, but seriously, 7 FREAKING YEARS. It’s amazing how casually the diagnosis happened, too. There was no sugar coating it. The specialist, after spending about 3 hours looking at my list of symptoms, examining me and discussing my case with another doctor, handed me a prescription for a drug called Plaquenil. “What’s the drug for?” I asked her. “Oh, lupus,” she said. “You have Lupus.” Simple as that. Well, it was a 3 hour appointment so it wasn’t that simple, but way more simple than the last 7 years of appointments and tests. You get the drift.
So there we have it. It’s Lupus. Now I can learn about Lupus instead of having to try to understand approximately ten different illnesses just in case I maybe had one of them. That really streamlines the whole educating myself on my health process.
My biggest take away from this is something I will stress to absolutely everyone: YOU HAVE TO BE YOUR OWN HEALTH ADVOCATE. Seriously. Don’t ignore that message. Read it again. Get it tattooed on your arm. Or just try not to forget it in a more normal way. YOU HAVE TO FIGHT FOR YOUR RIGHT TO
PARTY RECEIVE PROPER MEDICAL CARE. Over the last 7 years I have had doctors roll their eyes at me, tell me it’s probably all in my head (which technically was half true because there was a mass in my head causing half of my symptoms), and tell me I probably have diseases that I definitely didn’t have because they were not willing to be as thorough as possible with my medical care. Don’t just sit back and accept that. That’s silly. You have to take a stand and remember that you know your body better than anyone else does. You know if something is wrong. You have to live the rest of your life in your body so it’s up to you to make sure it’s working as well as possible. Don’t be lazy or passive about your health. You deserve better than that. I deserved better than that, and I finally got it. It was a long struggle, and there were times that I wanted to give up and accept that I would never know what ails me, but I’m really glad I stayed in the ring and kept fighting for myself. And that’s the only time I will ever use a sports analogy because I don’t really know how to sport.
So the moral of the story is:
cake is delicious take care of yourself and challenge the system if you feel deep down in your gut that physicians aren’t giving you the answers you need. Also, sometimes people have Lupus.
Now excuse me while I go create Lupus puns with my friends. So far my favourite joke was by my friend Jonny, whom upon hearing that I have an “autoimmune disorder,” texted me to say “AUTO immune? But you don’t have your driver’s license!” My friends are really good at this.