Starting Over With Lupus


When I was diagnosed with lupus, I thought my life was over. It had shattered into a million pieces when I found out I tested positive for it. I knew nothing about it, didn’t understand it and therefore, my life was over. I didn’t know anything about it. I just knew it had been making my life miserable for a long time. The fatigue, depression, headaches, aches and pains, chronic rashes and other trials I’d been going through weren’t just me being a hypochondriac. I had a disease, and I was more afraid than I’d ever been in my life.

I had a wonderful doctor who helped me get through it in the earlier stages. And I went online and read everything I could about lupus. This gave me more headaches so I took my medicine and stopped reading. Reading about other people’s challenges with lupus just made me feel more depressed.

At one point, the disease caused my brain to swell and I began having seizures. It was while I was in the hospital that I had a good, long talk with myself. I decided then that I no longer was going to consider myself a “victim” of this terrible diagnosis. I didn’t think of myself as having lupus, and it certainly wasn’t going to have me.

In the year of diagnosis, I had been in and out of the hospital because I’d undergone several operations. I had a hysterectomy, my appendix was taken out, part of my colon was removed, and I had a spinal fusion that was supposed to correct multiple herniated discs in my lower back. The operation didn’t work, and my back only got worse after that. I could no longer work, and my life became an endless barrage of blood tests, doctor appointments, and constant pain.

To say that I’ve been challenged is putting it mildly. My depression became worse because I was angry that I could no longer do the things I loved to do. Going on roller coasters was one of those things. I couldn’t even go shopping anymore because the pain left me breathless and in excruciating agony. It still does. I’ve tried every pain medication and procedure under the sun, and nothing has helped. I was sick and tired of being sick and tired.

I remembered the pep talk I had with myself in the hospital and realized that not being able to go on a roller coaster anymore was not all that important to me. Shopping and going out were to be limited to one day a week.

I’ve lived like this for the past decade. Since then, I’ve struggled with Sjogren’s syndrome as well, among other autoimmune challenges. I’ve had bloody noses that have sent me to the emergency room and had my nose packed every week for almost an entire summer. But I’ve also published 36 books, became an ordained minister, and continue to pursue my education through distant learning and online courses. I love to do crafts, spend time with my niece and nephews, and cuddle with my sweet and adorable cat. My husband takes me out once a week to go shopping, and we eat at one of our favorite restaurants.

It took me a long time to realize that having lupus didn’t mean my life was over. It meant my life was starting over again. I was facing different challenges and I was in a situation I never thought I’d be in, but I’ve learned to see the blessings through the struggles. Had I never stopped working, I might not have pursued my passion for writing. I might never have been in a position where I am now, where I can encourage and support other people who are dealing with illness and pain. Because believe me, your life isn’t over. And I believe it’s true… whatever doesn’t kill you does make you stronger. Sickness doesn’t have to define who you are. You are who you choose to be and you can be and do anything you want.

There are days when I’m in so much pain that I can’t get out of bed. It hurts to even think. When these days come, I let them. It’s because I know there’s tomorrow and it might get better. Some days are just spent sleeping or watching movies. If that’s all I can do on those days, I accept it.

So let me leave you with these words… your illness isn’t who you are. It’s only part of you. Accept yourself, love yourself, and look forward to tomorrow. God bless you all.

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Photo by Ryan Moreno via Unsplash

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