There was a woman walking from a Bible study group a few homes away from my parents home maybe 6 months ago. She called out my dog by name, yet didn’t know his name, she asked my mom if she was the owner and mom told her no, that i was. She walked up to my mom and said, I pray for your daughter’s health and I see cancer and was using her hand to go in a circular motion in front of her stomach. My mom told her I didn’t have cancer but I had lupus and kidney involvement so she assumed she was referring to that. We were blown away by this woman but really didn’t think any more of the cancer until a few weeks ago when i was diagnosed. i wish i could talk to her, maybe she was an angel just meant to inform my mom of what was to come. whatever or whoever she was i am grateful for her.
I will be 41 on Thursday, a little scary but, it is a fact. I have decided to live my life the way God has intended me to. I want to be happy and love myself no matter my size, circumstance, lupus activity, flare or not. It has been hard to stay in love with myself going through what I do with lupus and handling how it negatively alters my relationship with myself. I am currently going through a flare involving my kidneys and a flare up of my bronchitis that unfortunately because of the increase in my steroids will be more difficult to heal from. So it takes patience. I was so excited about therapy and now I just want to feel my normal. I’m so tired of being sick and then getting sicker. Changes need to be made sooner than later and its up to me to make them.
Everyday is different for me physically. All week I have felt no pain, no nausea, no dizziness, no nothing. Then last night I felt it, the aches and pains resurfaced, the feeling of being alone and no one knowing how it feels to have a chronic illness. It is a very lonely feeling and unless you are unfortunate to be afflicted you will never understand. I remember when I was first diagnosed, I would be told “You don’t look sick”,(youdontlooksick.com) WOW, I would think, that is so bold, but it was true, one day I seemed to be my old self and the next had aged maybe 40 years joint wise and that is hard to understand. That is lupus, it is unique and mysterious. Which makes it hard to manage. I will never forget after receiving my handicap placard, which made life alot easier for shopping trips by myself. There was an older woman that, as I got out of my car stated “You don’t look handicapped to me” I simply replied, “Thank you, doctor”. You gotta find humor from somewhere.
Ok, I started my book, Floating like a Butterfly about 10 years ago. The book is loosely based on my life and follows the main female character as she waits for love. The thing is 10 years ago that is where I was in my life, today is a completely different story. What I am waiting on now is acceptance from social security for my disability and not a man. I’m not feeling my original plotline, but would a book geared more towards lupus and where I am now be something people would grab off the shelves…wait a second, would it even be appealing to a publishing company. These are things to think about. It’s nice to be able to live through a person that I’ve created, but I’d also like to write down what I have been through because that is one hell of a story. So, are two books the answer? It will be a challenge but I’m up for it. May is Lupus Awareness Month so most of my blogs next month will be focusing on education in regards to lupus. The disease itself, symptoms, treatment, and living with a chronic illness. It affects more than just joints and body systems, relationships are tested, your mental state is tested, your sanity is tested, things that aren’t talked about as much. For example, I will cry if I misplace an envelope, this happened just last night and I have no idea how to handle these emotions. I am confused all of the time, I get in my car and will drive to the wrong doctor’s office and argue with the receptionist because they don’t have me scheduled. It’s embarrassing, but it is who I am now. I am a Lupie!!!