Columnist Amy Baker from Scleroderma News explains how she maintains a positive attitude
Living with a chronic illness like scleroderma can be a constant challenge. Dealing with myriad doctor appointments, pharmacy runs, and symptoms is often time-consuming. Staying calm while managing this disease is easier said than done.
One thing that’s helped me on this crazy journey is maintaining a positive attitude. But how can someone be positive while living with such a difficult illness?
One way is to realize that not every day is a bad day. Some days, there are no appointments. Some days, I feel like my old self. And on the days that are hard, I listen to some uplifting music, feed my soul, and do what makes me feel good.
Following are a few ways I find my Zen while living with scleroderma.
Finding a medication regimen that works for me
After years of struggling with worsening symptoms, I was finally diagnosed with scleroderma. To say it was overwhelming is an understatement. But I was also grateful to know what was going on inside my body.
After Googling my new diagnosis, I wondered if I would die. We’ll all die one day, but I didn’t want to be in the express lane, and I didn’t like facing a possibly imminent demise. (Quick tip: Don’t Google everything! Our journeys are all different.)
So I took action. I researched scleroderma medications and, after talking with my doctor, decided to start taking oral methotrexate. The side effects were too much for me, however, so I asked to receive the drug as a weekly shot instead. This worked well for me, and the unpleasant side effects went away.
Other medications were eventually added to my regimen, but it took multiple physicians, more blood tests than I care to count, and much trial and error to find a combination that worked for me.
Finding a helpful medication regimen can be a significant challenge. It’s important to educate yourself and exercise patience during the process. Although I still have a hard time taking so much medication, I remind myself that it’s preventing my body from attacking itself and helping me to live a longer, more productive life.
Establishing a good routine has also helped me with taking my medication. When it comes to timing and dosages, you should always follow your physicians’ orders. However, if something doesn’t seem to be working, have an honest conversation with your doctor. Remember, you know your body better than anyone.
Making my medical routine more enjoyable
It’s easier to emotionally deal with my health responsibilities when they feel fun and not like a chore. For example, I went online and found the cutest pill case for my medications. I also like to decorate my adaptive equipment.
Since fatigue is a big part of my scleroderma, I often cuddle up with warm blankets, which also keeps my Raynaud’s at bay. I buy brightly colored blankets with designs I love so that I’m surrounded by something that brings me joy, especially on my bad days. It’s a win-win!
Moments of Zen are so important with scleroderma. When you find things that bring you happiness, hold on to them tightly and never let go.
How do you find your Zen while living with scleroderma? Please share in the comments.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
Scleroderma Queensland Support Group