By Karin Gelschus
The effects of chronic illnesses vary greatly from person to person. For lupus, symptoms can be as minimal as a small rash or as serious as permanent organ damage. If you’re like me and many other chronic illness patients, the symptoms can affect any number of body parts. The different forms the diseases take can make them difficult to diagnose.
During the first several months, I went through countless blood tests, CT scans, MRIs and EKGs. I jokingly told my family that I was going back to school to be pre-med with all my new medical knowledge. However, it was really difficult to keep all the information straight – what tests I had done where, how long I’d had certain symptoms, which medicines I was supposed to take when and how often.
During the first couple of years my parents came to all my appointments, and after every one we had a recap of my doctor’s instructions. It helped to talk through the latest news and next steps together. Sometimes the information is tough to hear, so it’s helpful to have someone else there to listen for the technical information. Other times, the appointments result in small victories, and it’s just as important to have someone there to celebrate the small wins.
Whether or not you can have a friend or family member at your appointments, another helpful tactic is to keep a health journal, either online or on paper. After I was diagnosed, a family friend who also fights lupus gave me one of the best pieces of advice I’ve received – keep a journal.
With so many medications and varying symptoms, my journal helps me see trends in how I’m feeling. It also greatly improved the communication between me and my rheumatologist. He was able to better manage my symptoms when I gave him the most accurate information I could. During one appointment, I had him write down the exact amount of Prednisone I was supposed to take on what days and times because my dosage varied based on the day and time.
There are health journals specifically for this purpose, but a regular pad and paper is perfectly sufficient.
Here are a few items to record:
- Doctor appointments
- Medicine schedule
- Food diary
- Symptoms and rank each one on a scale of 1-10 based on severity
- Exercise regimen
Having this information on hand eased the stress of managing my illness. By writing the info down, I can reference it when I need to, and I don’t have to think about it otherwise. The less I have to think about having a chronic disease, the happier I am.
What helps you manage your health information?
Karin Gelschus was diagnosed with lupus at 23. She currently works as an interactive marketing specialist at CaringBridge, a nonprofit providing personal websites that connect people experiencing a health challenge to their family and friends.