How I Live My Best Life With Two Autoimmune Diseases
By Lisa Diven
My journey with rheumatoid arthritis (RA) started when I was 23 years old. I had just graduated from college after being a Division I athlete in volleyball. I had a degree in mechanical engineering and was about to start my career. I had started training for adventure races by running 10 miles with a backpack. During my training, I experienced pain in my foot, which I thought was a stress fracture. I didn't go to the doctor right away, because as an athlete, I was used to routine injuries. But when I finally did, the doctors also thought it was a stress fracture. I started wearing a boot to help the foot heal and then my other foot started hurting. That's when we realized it was something more.
From the time I started having symptoms until I had a full diagnosis was 6 months. It was difficult to get into a rheumatologist but when I did, they diagnosed me right away with rheumatoid arthritis. The issue that I ran into was that my insurance required I start with less expensive treatments than the biologic drugs that were recommended for me. After 6 months, if they weren't working, I could then be approved for the more expensive biologic drugs. During those 6 months, I severely suffered. I couldn't bend my arms to brush my hair. I had difficulty lifting my arms to my mouth to eat breakfast. And it took me a long time to get ready in the morning because I couldn't bend my knees when I first got out of bed. Unfortunately, this delay in medication led to permanent irreversible damage. Once I started the biologics, the aggressiveness of the disease slowed down immediately.
For the next 10 years, RA affected every joint in my body—from my neck and jaw, to my fingers and hands, to my knees and ankles, and even the joints in my rib cage. If you look closely, you can see some of the damage in my hands. Even without visible damage, however, I have spent most of my life living with some level of pain. For the most part, I was lucky and able to control the disease with medication. And I still continued to live my life. I worked a full-time job, met my husband and got married. Although the doctors would tell me how serious my condition was, I was able to take a positive attitude as long as I felt good.
When my husband and I decided we were ready to have a child, we had a lot of conversations about the risks of pregnancy and how to manage everything. We spoke with health care professionals and prepared ourselves by going to a high-risk obstetrics practice. What I wasn't prepared for was a difficult postpartum period. Three months after my delivery, I had a big flare and was in extreme pain. I started using the treatment I had been on before pregnancy and that didn't help. I tried numerous other treatments, but nothing was controlling my pain.
When my daughter turned 2, I realized I was too exhausted to engage in my life. I had thought it was just normal exhaustion from having a child. But at this point, she was sleeping through the night and I was getting 8 to 10 hours of sleep a night. I started realizing something was off and this was not my typical RA symptoms that I had been battling for the past 13 years. I had strange, inexplicable anxiety and depression. I started getting sicker. I had constant headaches and vertigo, I lost my appetite, I lost 20 pounds, I lost my drive for life, and I lost my spirit. After three months of medical leave, I decided that I did not have the energy to continue to work and I left my job.
During this time, I saw lots and lots of specialists. I had every test and every lab run, but no one could figure out what was happening. I found myself so weak one day that I couldn't get out of my car. I went to an ophthalmologist, a cardiologist, a neurologist, and even an oncologist—and they would each treat the symptom, but no one would look for the root cause. I started feeling crazy! I was so tired of hearing that nothing was wrong with me or they didn't have an answer. This went on for three months. Finally, in July 2018, I made an appointment at the Mayo Clinic. The rheumatologist there looked at my three binders of test results and determined that after my pregnancy, my immune system got even more out of whack and I developed lupus.
After suffering from debilitating symptoms for almost three years, I was relieved to finally have a diagnosis and a path forward. Lupus is tricky, but it is treatable. The past year has been a series of trials and errors with medications, but I am happy to report I have been slowly but surely making progress towards being myself again. I've made a lot of progress on managing my symptoms, but it can come at the cost of compromising my immune system. The biggest milestone was returning to work this summer.
Eighteen months ago, I was too weak to go into the office. I now have energy to play with my 4-year-old daughter. I have a new appreciation of going to work. I appreciate every minute that I have with my daughter. I am mindful about managing my energy levels and my health.
Through all these ups and downs, the Arthritis Foundation has been one of the most important things in my life. My friends there were able to connect me to resources and other people who could understand what I was going through. It is what keeps me feeling empowered and inspired. I have started a local support group for people with arthritis where we can connect with others who face similar challenges and learn to manage our disease together. I'm also part of a community of moms with arthritis. We discuss important questions like "Do I have another kid?" to daily struggles such as "How do I unbuckle a car seat when I'm flaring?" This organization has provided so much needed support during the toughest part of my battle with autoimmune disease.
My body is constantly battling my two chronic autoimmune diseases: rheumatoid arthritis and lupus. These invisible diseases cause my immune system to attack the healthy tissue in my body. RA attacks my joints; lupus, or connective tissue disease, attacks just about everything. I still live with joint pain most days and bouts of fatigue, and there are still days where managing a job, my family, and my health can be overwhelming, but I feel well more than I feel sick and that is a big win for me.