Despite the challenges, I’m thankful aHUS granted me a new life
I lost my car, home, and career, but gained something far more valuable
Living with a rare and chronic illness is undoubtedly one of the hardest things I’ve ever done. Nearly dying in the hospital and spending almost two months in the intensive care unit was just the beginning. The experience changed everything in my life — but ultimately, it’s changed my life for the better.
It all began in 2020. My family was sick with COVID-19, but I had no symptoms, so I thought I’d gotten lucky, especially since I was at a greater risk of complications because I had lupus. But then I developed several symptoms that seemed unrelated to COVID-19.
I brushed them off for months, attributing my decline to not getting enough sleep and not drinking enough water. But the final week before I went to the emergency room was terrifying. The scariest part was losing feeling in my legs and vomiting blood.
I had no idea I was literally dying. After undergoing weeks of testing, I was diagnosed with a rare disease called atypical hemolytic uremic syndrome (aHUS). It caused multiorgan failure and destroyed most of the blood in my body (a process known as hemolytic anemia).
I now do chemotherapy biweekly to manage my disease. Much of the damage to my organs is permanent, making daily life difficult. I’m unable to be as active as I used to be, so I’m disabled and can’t work a full-time job. I lost my car, my home, and my career, all in one swoop.
Adapting to my new life
But this experience had an interesting effect on my lifestyle. I’ve learned to live off a lot less money than ever before, and for the first time in my life, I’m financially stable. I never dreamed that would happen.
Working Monday to Friday is surprisingly expensive. Let me explain: When I worked, I was gone all day. I worked eight-to-10-hour shifts and had a one-hour commute to and from work. Food is also a huge cost when you’re away from home all day.
Most evenings my family arrived home after 7:30 p.m., and I’d often purchase takeout for my children to save time cooking. I also purchased lunch most days just to find a little joy in my week. Then I had to factor in the cost of gas for my SUV.
Even though working paid my bills, I was spending over 35% of my income on gas and food, and losing 10 hours a week on the road. That’s 10 hours of unpaid time just to commute.
I lost my home and my car during my medical ordeal because it took almost three years to obtain disability pay. I’d been struggling to feed my children while feeling sick, undergoing dialysis, doing chemotherapy, having surgeries, and more. So it was life-changing to finally be approved for disability insurance.
During my three-year wait, I became an expert at couponing. I’d learned how to coupon in 2008 when I had breast cancer, and the money I saved was a great asset while living off only $300 a month of child support.
I still coupon today, on an even larger scale. The U.S. Department of Health and Human Services reported that the federal poverty guideline for a family of four in 2024 is $31,200. Sadly, the disability income I receive is well below that.
The gift of time
Still, aHUS has given me time. Not working a regular job leaves me more time to coupon, more time with my children, and more time to do the things I want to do. I never imagined by age 40 I’d be basically retired, shopping several times a week, traveling, and doing what I want, when I want. That’s what dreams are made of. I was working myself into the ground before I got sick, and now, I never have to work a 9-to-5 job again.
When I was employed full time, I was rarely able to take time off work. We were always too short-staffed, or I couldn’t afford to miss a day. So even if I had extra money, it never mattered, because I couldn’t take time off to enjoy it.
Time is one of the most valuable things we have. Being out of a job showed me there’s more to life than just work. I’ve traveled to Antigua, Greece, the Dominican Republic, Florida, Mexico, the U.S. Virgin Islands, several South Carolina beaches, and the Tennessee mountains since I got sick. I never would’ve gone to any of these places if I were still working full time.
Nearly dying was the most arduous road I could’ve taken to get what my soul truly needed. I was on a one-way street to career burnout. Even though my health isn’t the same, and some days are hard, it’s all been worth it. Despite being tethered to chemotherapy, I feel free for the first time in my life.
Note: aHUS 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
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