Did You Know?

The following is another attempt at some point over the years to explain the frustration, intense anger and sadness I've felt about my body. It's repetitive. All of it is, and perhaps, it is exceptionally so - for someone who doesn't live this existence. I admit though. It is repetitive, but when it is not repetitive, it is often catastrophic. 

• Did You know that World Lupus Day is May 10th? 
• Did You Know that lupus is a chronic autoimmune illness? 
• Did You Know that lupus is an invisible illness? 
• Did You Know that I have lupus (SLE - systemic lupus erythematosus)?
• Did You Know that's why I won't go near you if you have a cold? 
• Did You Know that a guy once used this as a reason to dump me? 
• Did You Know that in second year (end of 2012/beginning of 2013), I experienced one of my worst and most difficult times with lupus? 
• Did You Know that even though my leg was so swollen and I couldn't walk, I cabbed to and from classes, and to and from exams during the end of October to December 2012?
• Did You Know that I finished second year on time despite how terrible, exhausted and weak I felt? 
• Did You Know that it took well over half a year to recover fully?
• Did You Know how much weight I lost? How skinny I looked? 
• Did You Know that I dropped to the weight I was when I was maybe 13? 
• Did You Know how absolutely sick I looked? 
• Did You Know the amount of time I spent in the ER, at doctor appointments, in bed because of how bad it was? 
• Did You Know at the age of 18/19, I had three blood clots and a pulmonary embolism on top of pneumonia?
• Did You Know how absolutely painful it was? 
• Did You Know I sat awake all night because it was painful to breathe, much less lay down and try to sleep?
• Did You Know that these are all complications of lupus? 
• Did You Know I have had this diagnosis since I was a kid?
• Did You Know that's why I have a rash on my face and my hands look the way they do? 
• Did You Know how rarely I tell anyone about this or having lupus, or how lupus affects my life?
• Did You Know the number of drugs I'm on to keep my lupus in check?
• Did You Know that even though it is free to see a doctor in Canada, it is not free to pick up your meds? 
• Did You Know that one of the drugs that could help manage my lupus and drastically make my life better cost nearly $2000 per month? 
• Did You Know that $2000 per month is not a reasonable or possible expense? 
• Did You Know how tiring it can get? The physical drain, the emotional drain? Feeling like it's unfair to be so young, and sick? Feeling like your life is out of your control?
• Did You Know how strange it is to be so young but so vulnerable to the state of your health? To have your capability capped off? To feel so limited compared to your peers? 
• Did You Know how difficult it is to know and feel your body giving up on you? Collapsing on you? 
• Did You Know that my lupus is still so much easier to manage than many other cases of lupus? Many other invisible illnesses?
• Did You Know that I have always tried very, very hard not to let this diagnosis or this illness get in the way of living? 
• Did You Know that I have an incredible support system? People I love who are helpful, understanding and encouraging when life becomes more than I can bear? 

Lupus is something I deal with on a daily basis. I am reminded and confronted when I put on my makeup in the morning. I am reminded and confronted the three separate times a day I take my pills. I am reminded and confronted when I feel my hands tingling. I am reminded and confronted when strangers stare too long. 

But I am also reminded and comforted by the number of people in my life who are so, so supportive. I am reminded and comforted by how lucky and blessed I am to live the way I do, to have the resources and mobility I do. I have the resources to control the pace of my life. I am able to live as comfortably as possible. I can manage my lupus and I have access to resources when things get out of control. I have friends and family who understand that things can get tough. When I say I'm too tired to do something, or cannot do something, they understand. This is lucky. I try not to take it for granted. I try not to take any of this for granted. I am very lucky. I try to remind myself of this as often as I can - above or along the frustration, anger and sadness I also feel. 

Did You Know I have lupus? Did You Know I live an incredibly privileged life?

A few pictures from that second year when my lupus got the worst it did.