I’m not big on making resolutions. I do like to reflect on the year each December.
2008 has taught me many things. Here are the most important ones.
#1. Obtaining competent and compassionate health care is my responsibility. I’m just one of millions of people that have lupus. If I took a passive stance about managing my life with this disease I think I’d be in a mental institution by now. This disease is complicated and no two people suffer with identical problems. In 2008 I managed to change rheumatologists, obtain second opinions from dermatologists, investigate alternative care therapies, and transferred off-label lupus medications to a specialty pharmacy. I researched clinical trials about photosensitive skin disorders. I was prepared to go to Johns Hopkins to see the director of the Lupus Clinic. I was relentless. I was also incredibly frustrated. I cried a lot. I saw my therapist on a regular basis. This year I started being my own case manager. Lately, I have trouble remembering what the doctor tells me, or what issues I want to discuss when I have appointments. Now I ask someone to go with me to be my eyes and ears. I demand excellent health care. And even if I get upset, angry and cry, I will not let anything stand in my way of getting honest answers and viable treatment options.
#2. It takes time to recover from unrequited love. As a matter of fact, it takes time to realize you’re hoping for the impossible. I don’t know if I’ll ever be capable of trusting someone with my heart. But I will heal. And it will take as long as it takes.
#3. Writing this blog has been a joyful experience. I’m no Dorothy Parker or Ann Raynd, but I do love to write. Writing gives me clarity and great joy. I’m amazed by the support received from friends, strangers and fellow bloggers. Whether I’m writing about lupus or life in general, being able to connect with people who relate to these posts has been an enriching and positive experience. It’s opened up a new world for me and I’m grateful!
#4. Less is more. Less rooms to clean gave me more time to read … or write. Less stress at work lowered my blood pressure. Less debt this year allowed me to have more fun spending the money I do have! Less useless crap in my basement is a blessing. Less prednisone means healthier bones, less dizziness and less bruises.
#5. I still have time. I hope to have years to fill with wonderful, enriching experiences. There are friendships to enjoy and babies to rock. I will travel. There is music to listen to and good books to read. I still have time for long lazy summer days, sitting in the shade at the water’s edge and breathing in fresh air. There is much to learn. There are many things to write and rant about.
#6. I am not my disease. That’s the long and short of living with lupus.
I wish you the very best in the coming year!