How I Manage Lupus
Last year after I posted my article on motherhood, a friend who I met through volunteering for the Lupus Foundation of America (LFA) suggested that I write about how I managed to get the lupus under control. I am seen as someone who has been successful at controlling lupus because I have been able to finish college, work full time and have a career. Lupus can be debilitating and many patients end up going on disability or are no longer able to work or attend school full time. It may not look like lupus affects me anymore, but it does. Until there is a cure, lupus is a chronic illness that I will have to deal with for the rest of my life.
Full disclosure: I don’t have a special formula, routine, or diet. I had tried but was unsuccessful in coming off my medications on several occasions. I am successful in maintaining a low dosage of my medications to minimize the side effects. I still get a flare every once in a while depending on what’s happening in my life. What is different now is I can spot a flare almost immediately even though my symptoms continue to evolve. I can also get it under control within a few days. Most importantly, I have learned how to live my life under my own terms and not be governed by lupus.
With over thirty years of experience living with lupus, I have a lot to say. I won’t be able to cover everything in this article. I will highlight some main points and expand on them in future articles.
Managing lupus involves addressing two major components, your physical and mental wellbeing. They are both closely interconnected. The mental wellbeing is the area that I struggled with most. I suspect other patients have as well. Living with lupus for me is in some ways is like having a bad relationship. Lupus can make me feel insecure, anxious, frustrated, trapped, depressed, and angry. It can be disruptive and unpredictable. At times it brought out parts of me that I didn’t like or never knew existed. However, unlike a bad relationship, I can’t walk away from it. I have to learn to manage it. And also like a bad relationship, I end up learning a lot about myself. Knowing myself, what I want, what makes me happy, and what matters to me are critical in how I manage lupus. At the end of the day it is about making choices, understanding the risks and consequences, getting over my pride, and accepting that I don’t have to be perfect.
Throughout the past 10 years that I’ve been involved with the LFA I met many other lupus patients. In talking with them, I observed many of us have type A personalities. When I was growing up, I didn’t like to sleep. I felt there were so many things I needed to do and experience that sleep just gets in the way. A common symptom of lupus is chronic fatigue. During my freshman year of college leading up to my diagnosis, the fatigue was so severe that I didn’t make it to class half the time. I just physically could not get up. Even if I could make it to class, I would fall asleep in class. Given my personality, it drove me nuts and made me very frustrated. I had goals, expectations, and dreams to fulfill. I didn’t come to college to sleep.
When I was finally diagnosed after eight years of having symptoms, my doctor prescribed Prednisone. It works by suppressing my immune system so it will stop attacking my healthy cells. Prednisone made me feel full of energy, particularly at high dosage. l feel I was able to do everything when I should be resting. What I wanted most was to go back to being a “normal” college student. But Prednisone is not something you can maintain at high dosage for long periods. It can have quite a few side effects. Prolonged usage at high dosage gave me insomnia and hypertension. Prednisone made me hungry all the time and gave me higher risk of diabetes and weight gain. It made me retain water and eventually caused my hip to degenerate. In addition, it increased my chances of infection due to a suppressed immune system. When I tried to taper down the dosage, my symptoms would often come back.
It took me several years to get a handle on lupus. My symptoms were quite severe at the time of diagnosis. Initially, the hardest part in knowing how to deal with lupus was learning how to slow down and give myself time to rest and recover. Ultimately, I had to come to the realizations that I have an illness that has no cure and I have to prioritize my health over my dreams and aspirations.
After I accepted that I have lupus, I became determined to beat it. You can’t beat your opponent unless you understand what you are dealing with so I started to research on lupus. I started reading journal articles. I also found website sites from organizations that have resources for patients on how to deal with lupus.
My quest to learn more about lupus 20 years ago frustrated me. I didn’t find much. Not much was known about the disease and there were no good treatments available. It was also a time when I was having trouble controlling lupus. I became depressed. I had a hard time talking about lupus and how I felt. My mom became my spokesperson, but she can only communicate what she observed. I had never heard of lupus before I was diagnosed. I didn’t know anyone else with lupus which made me feel very alone. I thought even if I told people how I felt, they wouldn’t understand. I realized much later, being able to communicate my symptoms and feelings is an important part of healing. I will talk more about this later and in future articles.
After a bout of feeling hopelessness, I decided to focus on what I can do. I can finish college. I can to go into research to help develop better drugs. I can be healthier, rest more, and select more appropriate exercises for my inflamed joints. I can protect myself from the sun because UV rays trigger lupus flare.
A very critical part of managing lupus is finding the right doctors. The butterfly rash finally got me referred to a rheumatologist and diagnosed with lupus. He initially prescribed a dosage of Prednisone that I couldn’t tolerate. I could only sleep one or two hours a day and I swelled up so much that people didn’t recognize me. When I started to have pain in my hip, I asked if there was anything I could do to slow down the degeneration and he told me “there’s nothing you can do. This is a possible side effect of the medication that you have to live with.” I had limited options for doctors under my parent’s health plan.
It was not until I landed in the hospital with an infection and was treated by the attending rheumatologist that I realized that not all doctors are created equal. This doctor printed articles for me to read to address my desire to understand. He adjusted my treatment plan to address the lupus symptoms that I was having. He prescribed Plaquenil to help me manage my persistent low grade fever, put me on calcium supplement for my hip, and prescribed iron for my anemia. He introduced me to someone at student services to help me get more time for exams and reduce my class load. Most importantly, this doctor listened to my concerns and gave me the confidence and reassurance that I can remain in college and continue my education.
Now when I work with doctors, I listen to my instincts. If something doesn’t seem right, I don’t hesitate to get a second opinion. I also select doctors that I feel comfortable being honest and open with. You are the person who knows your body the best.
Lupus is not the kind of disease in which a doctor can prescribe a treatment plan based on some lab tests. Depending on what symptoms I have, which organs are affected and what side effects the medications caused, I have team of doctors helping me manage my conditions. Communicating the information in a timely manner and providing feedback on the treatments were very critical in helping my doctors help me. My doctor told me to notify him of every little symptom. If I suspect a flare, I should not hesitate to check myself into an emergency room. He often emphasizes it is better to error on the side of caution.
I sometimes experience memory loss or “brain fog” especially when my symptoms were most severe. This is commonly report with lupus patients. I manage it by routinely writing down how I feel, my symptoms, and my reactions to the medications to ensure that I tell my doctor the next time I have an appointment.
Small adjustments can make a big difference. When I started taking the Plaquenil, I would take it in the morning because Prednisone is most effective taken in the morning and I wanted to take them together. The problem is Plaquenil made me nauseous and sometimes caused me to vomit. I tried drinking milk or eating a big breakfast, but I still felt nauseous. Finally, I realize if I took it in the evening, I was able to hold it down. Little observations like this helped me ensure I was getting the right dosage of medication.
There was another medication that I took for preventing one of the side effects of Prednisone, Diflucan. I took it once a month. I had no issues with it the first few years. Then, I started to notice a rash around my mouth. The rash would flare up and then get better. It would go through this cycle continuously. I told my doctor about the rash. He recommended that I go see a dermatologist. The dermatologist did a bunch of tests but could not come up with any conclusions. Finally, I observed that the rash would get worst after I took Diflucan. I told my doctor my observation and he said he has never seen anything like that for this drug, but he did agree that I can try stopping the medication. After I stopped the medication, the rash went away completely.
Since I’ve been diagnosed with lupus, I pay attention to every little signal that my body gives out. I found meditation to be helpful in getting me in touch with my body. In one of the meditation classes, they taught me how to scan and isolate each part of my body and pay attention to how it feels. Notice if there is any pain or discomfort. I never develop a strict meditation routine, but every time that I couldn’t sleep or felt stressed, I would meditate to help me relax and rest.
I realize I can go on and on about how I manage lupus. The story is still evolving as my life, lupus symptoms, and side effects also continue to evolve. For this article, I will leave you with one last topic and that is on managing stress. Stress can affect everyone’s health regardless of whether you have lupus or not. Managing stress is very important since it is proven to trigger lupus flares. Stress, however, is hard to control because life is unpredictable. In 2009, I thought I had everything figured out. My lupus has been in remission for several years. I had hip surgery so I was no longer in pain. I found my soulmate and was about to get married. In April my mom was diagnosed with stage 4 colon cancer. My happiness was cut short and my life was again turned upside down. Besides from watching my normally energetic and vibrant mom deteriorate in front of my eyes, I struggled with the differences in treatment philosophy between my mom and me. It was a very emotional and stressful 18 months. It also coincided with me trying to reduce my medications so my husband and I can start a family. The combination did not end well for me and I ended up having a couple of flares.
Several years later, my dad also had a series of serious health issues which lasted for almost two years and ended in brain surgery. Again, the stress was too great and lupus took the advantage to flare up. I don’t have a way to control these major life events. In those situations, all the things that I did to help reduce stress like exercise, dancing, meditation, acupuncture and massage therapy did not work. One major problem is I just didn’t have time for myself in those situations. And even if I could make time, the stress was too great. I just have to deal with it the best I can, take time from work when I need it, and ask for help when I am overwhelmed. I am grateful that I do have a very strong support network. My husband, family, friends and coworkers have been amazingly supportive. That is my secret to dealing with all the challenges that life has managed to throw at me.
Stay tuned for more articles on managing lupus. I plan to have articles on diet and nutrition, travel, communication and self-advocacy, and exercise.