In the beginning of 2003, I felt like my life was perfectly manageable. I was serving as Poet Laureate of my city and had many projects underway including founding a poetry festival and creating a camp for at-risk teenage girls. I was doing all of these things while holding down a job and raising two young children. I felt like a superwoman.
Then one day my daughter came down with the flu. No problem, I thought. I will just keep her home and take care of her. Then my son came down with the flu followed by my husband. I was taking care of a house full of sick people. Then the inevitable happened: I got sick. I did not as feel as bad as the rest my family. I had a mild fever, and I felt achy and run down. Still, I was still able to take care of everyone.
When my family recovered, I did not. My symptoms lasted for months. My hair started to fall out, and people commented on how sick I looked. My face broke out into a rash, and it was a struggle to get out of bed every morning. After several visits to my primary doctor, she finally decided to send me to a rheumatologist where I was diagnosed with lupus.
After a year of misery, I felt relief. I finally knew what was going on, and I could put together a plan of action. Even better, I had an explanation for other symptoms that had been bothering me for years.
After a year of misery, I felt relief. I finally knew what was going on.
Prior to my diagnosis, I would go out for a day at the beach with the kids and feel sick the next day. The sun felt like someone was sticking burnt matches on my skin. It turned out that lupus causes sun sensitivity. I was relieved to know that the symptoms I had been ignoring were not all in my head.
When I was diagnosed with lupus, my doctor told me that medication would help a lot, but I would have to make some serious life changes. The first thing I looked at was our big house. Before lupus, I used to clean our house top to bottom on my own. Once I was diagnosed, I asked my family to pitch in. I think it took my husband about a month before he gave in to getting a housekeeper.
Once the children were old enough, I sold my house and moved into an apartment near the beach. The house was just too much for me to handle. When I had a lupus flare, I often could not climb the stairs, and I felt trapped on whatever floor the flare started on.
Another thing that changed was that I had to go from caregiver to care receiver. This was a challenge for all of us. It took my family a while to understand that I was not the same person. They did not understand the pain I was in. I had to learn to explain it to them. It took years of communication and years of mistakes, but we learned to understand one another.
My friends and co-workers had to understand that I was not always going to feel well enough to do the things they wanted me to do. I ended up missing a lot of events. There were a few people who did not understand that. That was okay, because I had a lot of good people in my life who supported me.
Despite the sacrifices, I am happy with the way lupus has changed my life.
Of course, the person who had the most to learn was me. I had to learn to only take on things that were most important to me. Most anything I do, I will likely have to do in pain or through illness, so that thing has to be worth it. I decided that writing was worth it.
Early on, I started writing a blog about my life with lupus. Now, I have moved on to writing about other things that matter to me. I write inspirational articles, poetry, biographic and political pieces. I used to work with non-profits but after losing my third job due to my disability, I decided that I would rather write than struggle to hold jobs that were emotionally draining. Learning to live with lupus means learning to let go.
Despite the sacrifices, I am happy with the way lupus has changed my life. Before lupus, I ran around doing all sorts of things without considering how much joy any of the things gave me. Now I am more selective. Writing is something I have always loved to do. Lupus took things away from me, but I get to choose what to give up, and when I gave up less important things, I got more of what I really wanted and needed.