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.
AnneMarch 28, 2015 at 9:18 am (8 years ago)
I’m so pleased for you to finally have a diagnosis. It seems pretty common for them to take years to get to with certain conditions. My fibro dx took 6 years to get to and my CFS before that took from 1997 to 2010 to be diagnosed with a catasrophic misdiagnosis of anorexia nervosa which with the treatment I had for it actually left me with an eating disorder. I’m livid now, but I finally have diagnoses that are real and true and genuine and I can get on with the bits of my life that are left and construct a new one with the rest of it. I hope this allows you to do the same. All the very best. Anne xx
damselinadressMarch 31, 2015 at 1:28 pm (8 years ago)
Thanks, Anne! It’s pretty devastating how long and misdirected the road to diagnosis is for a lot of people. Sorry you had to go through that, but I’m glad you got your diagnoses too!
AmandaMarch 28, 2015 at 9:46 am (8 years ago)
I am so glad that weight is off your shoulders, and I’ll do my best to think up some great lupus puns!
damselinadressMarch 31, 2015 at 1:29 pm (8 years ago)
Thanks, Amanda! I look forward to the puns.
CarolineMarch 28, 2015 at 9:49 am (8 years ago)
I can’t imagine the relief to know after so many years what is wrong. I was told I had fibromyalgia and then Rheumatoid Arthritis after about 2 years of care. It was thought I had a similar issue but then I got a name and a treatment plan. So you may live on a smallish island but you have world available through the internet. I am sure you can find lupus support somewhere to help you cope. Feel better.
damselinadressMarch 31, 2015 at 1:30 pm (8 years ago)
Thanks, Caroline! Doesn’t it make such a different to have the name and the RIGHT treatment plan?!
I’m already getting lots of support from the Lupus community which is great!
damselinadressMarch 31, 2015 at 1:30 pm (8 years ago)
DonnaMarch 28, 2015 at 10:02 am (8 years ago)
I am so pleased for you that you have FINALLY!! got a diagnosis. 7 years is a joke isn’t it?! You are so right that we have to be our own health advocates. My GP actually took blood tests to look for inflammation as I had told him I was worried about lupus. Guess what? The NHS refused to test them!! They got sent off to the lab and they said no she doesn’t have symptoms to justify having these tests down. Em… What?! I’m pretty sure I had freaked myself out by feeling I did. I ended up paying to have an anti-nuclear antibodies test done privately but it came back as negative. So that put my mind to rest … Only it’s hasn’t really. I’m not saying I think I have lupus (my husband always gleefully replies “but it’s never lupus” hehe). But how I feel has been so different these past few months that I instinctively know something isn’t quite adding up. So if you have the time to talk about what things were discussed and if any tests were done during that 3 hour appointment I would be interested to hear. I love your attitude and humour. I think we would totally be BFFs if you lived here hehe! I hope your treatment goes well and it helps you to feel as well as possible.
damselinadressMarch 31, 2015 at 1:31 pm (8 years ago)
Thanks, Donna! I hope you get everything figured out too!
EscharaeMarch 28, 2015 at 10:11 am (8 years ago)
Welcome to the club. I spent an entire decade listening that I was suffering from stress, anxiety and/or depression. When I was diagnosed with multiple sclerosis I felt so relieved everything made sense. No more overlooking my symptoms. Take good care of yourself and always keep that good humor. 🙂
damselinadressMarch 31, 2015 at 1:32 pm (8 years ago)
So sad that it took a decade for you to get an MS diagnosis. I can see how they can confuse MS with some illnesses, but not sure how they can confuse it with anxiety and depression for 10 years. I will take good care of myself, thanks! You too!
NellMarch 28, 2015 at 2:33 pm (8 years ago)
I also had to wait many years to find out I have fibromyalgia. Thank goodness I had a doctor who knew I was really sick and promised she’d help me find out why, no matter how long it took. Over five years in my case, but I still remember the overwhelming relief at finally having a name for the monster. If you haven’t read it already, go read Spoon Theory. The website is called But You Don’t Look Sick and it is such a help in explaining the limitations to others. Here is the link: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
damselinadressMarch 31, 2015 at 1:34 pm (8 years ago)
It’s such a relief to find those doctors that actually want to help you. It seems to be a rare thing! I have read Spoon Theory before – it’s great! Thanks for sharing 🙂
JennyMarch 28, 2015 at 6:17 pm (8 years ago)
Wow what an amazing post! I loved how you used humor to explain everything especially the “cake is really delicious” one! I have a chronic illness too, M.E. unfortunately …I’m sure that you read about it when researching chronic illness. I wish that I could talk about my illness with the same humor and gusto that you do! You are one toughcookie, I feel that now you know what you’ve got there’s no stopping you. For me, even though there is no treatment or effective cure for M.E, finding the online community, and belonging to a ‘group’ has really helped me. Sometimes knowing that you aren’t alone isoall you need! You’ve got this
damselinadressApril 6, 2015 at 11:44 am (8 years ago)
Thanks, Jenny! Knowing which disease it is and where to turn to for support is so important. It manages to take a weight off even though you know there is no cure. Best of luck to you!!
BeckyMarch 28, 2015 at 7:41 pm (8 years ago)
I’m so happy for you! Non-sick people don’t understand that this IS a celebration! We are sick whether they give us a diagnosis or not. When there is not diagnosis we’re sick AND lost! At least once we get a diagnosis we have a REASON for being sick! Those 7 (or whatever) years before, someone asks what’s wrong and you launch into a diatribe of symptoms and possible disorders speaking faster and faster trying to make them understand before their eyes glaze over. Now it’s just “I have lupus”. Thank God! Everybody knows the word, even if they have no idea what it means they know enough to understand you’re sick! So CONGRATULATIONS!
BTW, every time I read your posts I hear you in Katharine Isabelle’s voice. I think she should play you in the movie about your life. https://youtu.be/V5THiQq0OLk
damselinadressApril 6, 2015 at 11:46 am (8 years ago)
I LOVE KATHARINE ISABELLE so that is a huge compliment. Thank you! Let’s try to get in contact with her to make a movie about me now. haha
You totally understand why it is a celebration. Before now it was such a hassle when people asked me what was wrong. It usually started with me rolling my eyes because I had no clue where to start. It’s WAY easier now. Thanks for the congratulations! You rock!
AmberMarch 28, 2015 at 11:59 pm (8 years ago)
Congratulations are in order, I guess? I hope that along with your new diagnosis and treatment plan that you find some relief from your symptoms! It took me awhile to respond to Plaquenil (my drug of choice), but since then I’ve been almost symptom-free for three years! Congrats again and best of luck to you!
damselinadressApril 6, 2015 at 11:48 am (8 years ago)
Thanks, Amber! So far the Plaquenil seems okay, but I was also on other medications when I first started it and today is my first day solely on the plaquenil and not coupled with steroids. How long did it take you to respond? I have some pretty high hopes for this drug so hopefully it is nice to me 😛
JessieMarch 29, 2015 at 8:45 pm (8 years ago)
I’ve nominated you for the Creative Blogger Award! http://jessiejanellereyna.com/2015/03/29/being-creative-is-the-best/
damselinadressApril 6, 2015 at 11:50 am (8 years ago)
Thanks so much! I will look into this now! 🙂
HelenaMarch 31, 2015 at 7:52 pm (8 years ago)
You must feel so relieved!! Congrats on finally having a label
(usually I hate labels, but in this case it clearly is a move in the right direction)
Now you can find information, proper treatment, and support.
I LOVE your attitude, your posts, your humor… I hope you continue to post about your health journey!
Stay strong and thanks for sharing.
PS – How is your back? Is your sciatica gone?
damselinadressApril 6, 2015 at 11:49 am (8 years ago)
Thanks Helena! I will definitely continue to post about my health journey! And you’re right, this is one label that I am completely okay with having 😛
My back is doing okay! The sciatica is pretty much gone now. I have a few evenings here and there where I can feel it acting up but it’s certainly not as bad as it was! Thanks for asking 🙂
Lynn HammondApril 8, 2015 at 8:56 am (8 years ago)
How funny is it that I was able to read this and laugh… Because you told my story too! Great job! I am in NL too. You can check me out on Twitter @lynnhammondnl
BiancaApril 13, 2015 at 1:06 am (8 years ago)
Thank you for this.
I was diagnosed with Lupus last year and this is probably one of the most relatable story I’ve heard thus far (also, I’m a fellow Canadian – damn the cold and joints). You’re symptoms are similar to mine and so is your humour so thank you for giving me a good laugh which most people deem inappropriate or just wouldn’t know how to react to (that awkward moment).
Your blog is definitely bookmarked as of now.
Jilian RoseApril 20, 2015 at 1:36 pm (8 years ago)
I know that I have already told you how happy I am that you finally solved that mystery but let me say it again. You go, Nancy Drew… I mean, Lisa. Better to know where to start than to not even know what you have.
Also, brilliantly written article, again. As always.