Lupus Sucks

I had this silly idea in my head that I could write about my life without dwelling on Lupus. Okay, it's not the only silly idea in my head, but let's just focus on one at a time. After all, I have Lupus, it doesn't have me. There is a lot more to me than just my Lupus, I do stained glass, I've lived in Europe, I've been a hospice volunteer and I have a wacky family whose motto could be "We don't just embrace insanity, we feel it up, French kiss it and buy it a drink."



I have tenaciously held onto the my overwhelming talent of make believe. I can of make myself believe that nothing is different, I know that I am still "me" inside no matter what.

But the most amazing things can blindside you from out of the blue and sometimes my responses are disproportionate to the event. I've learned that when I am using my cane, even 83 year old women will hold a door for me and I've learned to accept that gracefully. Then out of left field, as I was leaving the grocery store, a very sweet lady got back out of her car to offer her teenage son's help in lifting a case of bottled water from the bottom of my cart up into the trunk of my car. I said 'No thanks' so fast, I think she got whiplash just hearing it. I thanked her and assured her that it wasn't necessary. It was very thoughtful of them and I truly could have used the help but my pride spoke up before my brain even engaged. Admittedly, it is usually my mouth that engages before my brain, but I digress.

I know that I have many opportunities to educate people about Lupus and how chronic diseases affect our lives, just by using a cane. It's better than a sign, and it can double as a weapon. I was told buy a WWII veteran that it is better to poke than to swing, because it's harder for your victim to protect themselves. Ahh, digressing again....have I mentioned Lupus brain fog? It's real toss up as to whether the Lupus itself causes it or if it is the side effects of the medications used to treat Lupus. Some days, the word search puzzle in my head is a couple of levels above my ability.

Lupus is usually one of the "But you don't look sick" kind of illness, and because I don't look like I should be using a cane, I am asked all the time if I hurt my leg. I just tell them that I have Lupus and that it as annoyed the nerve endings in my back and hip and the cane helps me so much that I need less pain medication. More often than naught, they know someone else who has Lupus and ask if I mind explaining Lupus to them, because they really don't understand about it. I try to give them the Readers Digest version, when you have a chance at a willing audience, you don't want to lose their interest to boredom.

One of my favorite websites is called www.butyoudontlooksick.com . It was started by a young lady named Christine Miserandino, who has lupus. She wrote a great story about her illness called The Spoon Theory. It explained how I look at my life, better than I ever could. I made copies for family, friends and coworkers to read and watching the dawn of understanding come over their faces was amazing. But even better, is the link to the store that has t-shirts for people with chronic illnesses. A few of my personal favorites are: "I have Lupus, what's your excuse", "My disabling chronic disease is more real than your imaginary medical expertise" and last but not least, "The Predisone Makeover, a fat moody b*tch in one easy step". If I am going to be a walking public service announcement maybe I should get a shirt and be a billboard too.