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The Reality of Managing My Health and a Career

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Life is busy just managing my health alone, but I also have a career as a seamstress and writer. My days are filled with client meetings, transforming complex bridal and ready-to-wear outfits, and doing intricate and detailed sewing, and writing articles and books. Art has been my passion for years, but when the pain began plaguing me, I almost gave up — on life, on sewing, on art, on writing, on everything.

For two years, even before a specialist diagnosed me with fibromyalgia, I was bedridden with the pain. I was not on social media. Chronic pain was not always in the equation of my struggles. I have a genetic disorder, 22Q11.2 deletion syndrome, which includes a deficient immune system, food sensitivities and more. Living with a genetic syndrome compounded with diseases such as heart and lung disease, depression, anxiety, spinal arthritis, scoliosis and now chronic pain affects me. After a lung collapse in 2015, and enduring lung surgery on Christmas Eve, that’s when the pain became embedded permanently in my body, with more than 18 tender points. That quicksand feeling, the creeping pain that inches up, will come on even despite how well I am managing. When it’s got a grip on me, I have to stop working, do something else and honor my limitations. My body goes on strike, and the pain issues a full-body “lock-down.”

I couldn’t find the language to express to physicians and doctors how these pain flare-ups occur. It took years of counseling, learning and knowing myself and my body intimately to be able to explain these symptoms. I am active because I have to be; my heart and lung health demands an exercise regimen. I am at high risk for heart attack and stroke. Nowhere have I ever said that I am 100 percent recovered from fibromyalgia or any disease for that matter.

Is my circumstance with chronic pain better now? Yes, but the struggle doesn’t go away. I will have another quicksand lockdown again. That’s my reality with pain. It’s ongoing and with the constant awareness of how I am feeling. Sometimes, it feels like I have this double-life of career one day and in the hospital another day.

I know I’ll never feel 100 percent but even before my fibromyalgia diagnosis, my genetic syndrome 22Q11.2 deletion syndrome was enough for me to manage. I’ve always had the urge to get up and move. If I sit or lie down for too long, my pain will worsen, but with heart disease, an inactive lifestyle is dangerous for me. Being forced to workout or use that Styrofoam roller is a challenge too, but I’ve gotten used to it. I’ve made it routine.

The most unfortunate part of having fibromyalgia is I can’t take medications. Because of my genetic syndrome, I have a sensitive system that rejects any drug. I treat holistically, and these natural treatments and a supplement regimen work best for me. The only option I am left with for treating fibromyalgia on top of 22Q is to have an active lifestyle as much as I can handle. Swimming eases the tension and stress on my muscles and joints, especially.

It wasn’t until eight months ago when I launched my sewing business with the encouragement from people who inspired me not to give up. Believe me, I do feel like giving up a lot, but it would be impossible for me to quit something I love. Sewing and writing are my therapies too, not just my career. My health often feels like a puzzle I can’t solve, which is perhaps one reason why I love sewing. Designing clothing is a puzzle I enjoy solving.

Being creative prevents my depression from spiraling due to the pain, and I love doing these things. I don’t mind having a lot to manage, though it can be overwhelming on rare occasions. Finding balance has helped, and each day, I make this quest for balance priority.

We are all affected by fibromyalgia differently. A specialist told me to keep moving — easy for him to say! My days are busy and quite isolating as well. Everyone has a different approach to health and wellness. Wherever you are with fibromyalgia, if there is any advice I have, it’s to listen to your body and honor it. Knowing myself, my symptoms, and learning about all of my diseases has literally saved my life.

Photo provided by contributor.

Originally published: August 20, 2018
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