14th Annual Flight of the Butterflies- Butterflies of Hope Lupus Warrior Stories is a powerful celebration of strength, survival, and spirit. Through the eyes and hearts of lupus warriors, we share stories that often go unseen. Stories of pain, resilience, and triumph! These butterflies may have been battered by the storm, but they continue to rise, wings open, ready to soar.
At Lupus In Color, we honor each journey as a flight of courage and beauty, reminding the world that even in the midst of lupus, warriors still fly.
Flight of the Butterflies
Lupus Warrior Cindy Roche
My name is Cindy, and I’ve lived with lupus for the past 22 years. I’m not sure about what part of my story to share… it’s been a journey!
When I first got sick, I struggled for nearly a year before I just couldn’t manage anymore.I was off work for 18 months and flared almost as soon as I went back – which to a career change and a whole new outlook.
All these years later, I have learned, to take it day by day. Bad days will happen and I can’t beat myself up for it (I used to get so down on myself). I have learned that while I have limits, I can still enjoy my life. I have also learned who my friends are and am so thankful that they’re there for me, that they understand that sometimes I can’t do what I thought I could and get that I have to manage my health first.
I remember my friend telling me that most people don’t live with chronic pain, don’t have physical reactions to the sun, don’t have fatigue that always lingers… and it’s okay, take the good days and accept there will be bad ones, but don’t stress over what others can do that I can’t anymore.
I’m in Canada, I have a rheumatologist who is okay. I see him once a year. I live with lupus, fibromyalgia, sjogrens, menieres, RA, belly-issues. My old doctor used to say “It’s all the lupus”, but I’m sensitive to meds so as I’ve said, I manage day to day. I do take plaquenil, and azathioprine which helps me to tolerate the first. Then I take another med for the menieres/vertigo, I take a few supplements, d3, omega-3, and calcium. I learned just this past winter that I’ve been reacting to dairy and I I hadn’t noticed. I was a daily milkshake girl, but when winter hit, I stopped and didn’t have milk in the house for a couple of weeks – and found out because of the agony on waking the next day… So now I’m exploring my diet.
The biggest help for me has been swimming, it gets me moving, and it brings me joy just to float on days I’m sore. It is easier to stretch or do resistance-repetitve exercise movements when in the water since there is no pressure/weight on my bones, joints, or muscles… It makes me feel stronger and better all around.
I am married to a good guy, have a nice little cat, get out now and again, and don’t get worked up about the fact that my house isn’t as tidy as other peoples, I will get around to it.
I have started baking bread recently and have been having fun with different creations, I like to read, I get to work from home at a job I like (although we may be going back to the office in the fall), and life with lupus is what it is – can’t give up so I will make the best of it.
