When I was 31, I developed a rash on my face and noticed I was exhausted: daily. I was working in television production in Los Angeles at the time, so I assumed that was why I was fatigued. The rash however was a mystery. I saw a family doctor in Burbank, California and he provided a cream to do away with the rash and ran blood work. Two days later he left a voice message on my phone. “Christine, yeah you have Lupus, no big deal.
I’m headed to Greece for vacation and we will talk when I get back.” No big deal? What the hell is Lupus? Turns out, I had a friend whose mother had died from Lupus. So I google’d it. Big mistake. Time past, I moved back to the East Coast and found a rheumatologist who cleared things up for me. The saddest thing I’ve learned is that most things are autoimmune: Cancer, Diabetes and MS, just for starters, however autoimmune diseases like Lupus are rarely taken seriously. We are often called “lazy” or “depressed.”
Yes, depression does follow suit with Lupus, who can tell what came first, but here’s the reality about Lupus:
1. Lupus is an autoimmune illness.
Lupus is an autoimmune illness, which attacks your organs. How it was explained to me back in 2001 was like this: you have two football teams inside your body. The white team and the red team. The white team is your team (basically good cells). The red team is the team everyone is hoping will lose. When you have HIV the white team is losing in the playoffs, because the red team is kicking its ass. When you have Lupus, the white team is colorblind.Although I hate sports (except Hockey), this made sense to me.
2. Lupus is not contagious.
There are several theories on how Lupus occurs; including genetic or your just plain born with it, but the one that resonates with me the most is the theory of trauma to the body. I was hit by a car when I was 19 and have not felt the same since. Fatigue and pain grew steadily over the years, as well as headaches and constant illness such as flu, bronchitis and pneumonia. It was a slow process, so I never really grasped what was happening. Until I had major surgery at 41. Three months later, I could barely move, had to retire from my job of teaching and start infusion treatments. My current rheumatologist says it was the surgical trauma, which “woke” the sleeping dragon.
3. Lupus changes lives.
I don’t cancel on you because I want to, I don’t bail out at the last minute because I have better plans. Sometimes things happen suddenly, a migraine, an inability to walk, or my whole body just crashes. This happens in the reverse as well. If I’m having a good day I suddenly want to go out and dance on tables. I get a sudden wave of “there’s no time, I got to do it now!” So if I text you, please try to be ready, not that it is your job to entertain me, but I chose you because I know you got the stuff I need to get moving.
4. Lupus can alter life length.
Lupus patients on average live to about the age of 72. I often feel like the first 48 have been a waste, but I look back and realize, I had a lot of fun. I have a lot of education and I’ve had wonderful experiences, but it went by so fast so now I am mindful of the last, maybe, 25 years I have left and want to conquer a ton. There are places I want to see and things I want to do (like finish my novel), but mostly things I want to feel. I’m working on that.
5. Lupus is opportunistic
Meaning Lupus charges for the weakest organ. Many people with Lupus will have to have an organ transplant or go on dialysis at some point in their life. I’m trying to prevent the latter. Dialysis is awful and takes up a large portion of your life. Not that I’m not grateful for these often life-saving treatments but it should not be the only choice. Right now, my doctors are keeping an eye on my kidneys, but they are not avoiding the other organs. Every three months, I have 13 vials of blood pulled from my body to check every organ to ensure Lupus hasn’t attacked. People with autoimmune disease are 70 percent more likely to get another autoimmune disease. I currently have Lupus, Fibromyalgia and Raynaud’s Syndrome, but I guess I’m lucky: it could have been worse.
Lupus is a daily struggle. I understand that it is one of those “invisible illnesses” you don’t hear of every day, but for whatever I have left in life, I just want to be invited to the party, travel a bit and love and be loved. Can Lupus kill me: yes. Will I let it beat me: hell no.