I’m sitting here at my laptop, crouched over to relieve the pain in my lower back. My legs are throbbing so bad it makes me want to cry. I have a monstrous headache and my fingers hurt each time I touch the keyboard.
Welcome to living with Lupus! I had a three-day flare last week, but with medications and bed rest, it resolved. Then, on Friday, my son and I made the two-and-a-half-hour drive to the Izod Center at the Meadowlands in North Jersey to see Pastor Joel Osteen.
I adore Joel, and he’s taken my faith to a higher level. Because of him, I’m starting school on-line next month to get my BA in Christian Studies.
I prayed one night to God and said, “What can I do with the seventeen years of nursing I did before becoming disabled with Lupus eleven years ago.” His answer was clear: become a hospice chaplain.
It made perfect sense. In my years as a critical care, trauma, Flight RN, and Oncology RN, I saved countless lives. However, the ones who were dying were the ones that I remember most. I worked night shift and the patients, who all seemed to be awake at night, appreciated the chance to talk to someone about death and dying.
But will I continue to be able to reach my degree? My new rheumatologist has decided that fifteen years on prednisone is way too much, and I agree. I developed osteoporosis and broke so many ribs; my pulmonologist thought my husband was abusing me. I was afraid of doing anything that might fracture my lumbar spine, where the worst of the osteoporosis was.
Last month, I received Reclast, a once a year osteoporosis drug. I take twenty-two pills a day just to cope with lupus and fibromyalgia. Actually, three are for interstitial cystitis, another autoimmune disease associated with fibromyalgia. I go to the physical therapy pool three times a week and will continue to go for the rest of my life.
The last three days have been unbearable. On a pain scale from one to ten, my pain now is an eight, headed for nine. I can’t take Motrin or any other NSAID (non-steroidal anti-inflammatory drug) because they affect my kidneys, and Tylenol is worthless.
So I try to keep myself busy, reading Joel Osteen’s book, the Bible, Facebook, and my email.
But now I’m out of Vicodin, my “go-to” medication for pain. I get no high from it, like drug addicts do; it simply relieves my pain and makes me more useful.
I’ve warned my eleven-year-old son that I don’t have pain meds right now, and the fact that he’s lived with me since birth, he knows what that means: do what I need him to do when I say to do it, not when he feels like it. And bless him, he usually does.
One of my former rheumatologists added to my chart that I’m a “chronic pain sufferer.” I don’t seek out medications at ER’s or the street corner—no, I suffer through it.
Joel Osteen says that God has us in this place for a reason. I often wonder why the Lord decided to give me this disease. It affects 1.5 million people in the U.S. but why isn’t there a cure? Why do I have to depend on a narcotic like Vicodin to ease the pain? There is a new medication on the horizon, the first new drug for Lupus in fifty years.
My husband’s grandmother had Lupus too, and she was on the same medications I am on. It doesn’t make sense.
People, especially women, should learn more about Lupus, since 95 percent of victims of Lupus are women. Talk to your mother, your daughter, your sister, and your girlfriends. Everyone seems to know someone with Lupus. On Facebook this week, we lost two more FB friends to Lupus.
