Chronic Illness Took My Daughter’s Future. Congress Just Took Her Safety Net.

This photo marks last time she was carefree and full of optimism for her future

I wish I could come up with a clever name for the heinous tax & spending bill that was just passed. One thing I know - there is nothing beautiful about it.

For me and my family, this is personal.

My daughter is suffering from a chronic illness. It all started with a tiny seed-sized tick infected with Lyme bacteria, along with other tick-borne pathogens.

She is the eldest child. Typical A-type personality. Driven to get straight As, she was an honor student, multi-sport varsity athlete, and captained her sports teams in her junior and senior years. She was a swim coach for her neighborhood pool at 14, gave private swim lessons to toddlers, babysat all over the neighborhood, coached youth lacrosse, founded a summer youth lacrosse camp with her sister, and was a referee for the local youth lacrosse program. She excelled in academics, took honors classes, and sang in the district choral group. She was a young achiever, a leader with a bright future.

And she was known to be kind. People used to tell me that when she walked in a room, her smile lit up the whole room. She was a magnet for toddlers, and she could speak to adults with perfect ease.

This is not a parental brag. It was who she was as a teenager. I would tell her to relax a little - make sure to have fun, not to be so serious. She rolled her eyes.

In her junior year, she began having medical problems. Injuries she couldn't get well from: back and hip issues, knee pain, ankle swelling, and more. Her sleep was completely fragmented. Sometimes she would only get two or three hours of sleep at night. We saw legions of doctors.

Finally, in her senior year, she was diagnosed with chronic Lyme disease.

She was determined to go to college. She had been ready since 10th grade.

Although we did everything possible to enable her to go o college while she was being treated for Lyme, at the end of her first semester, her body betrayed her. She worsened, stopped sleeping altogether, had a myriad of new health issues, and came home before she could complete her finals.

She spent the next 9 months in intensive Lyme treatment and went back to school again that fall, making it through her sophomore year until second-semester finals began. Then she collapsed, and her body was phasing into organ failure. She recovered but was unable to continue college as she entered the next era of Lyme treatments.

It has now been more than 15 years of multiple doctors, therapies, and an enormous amount of out-of-pocket costs because many of the doctors and medicines needed for chronic Lyme patients are not covered by insurance (that is another topic that I won’t cover here).

Today, she works part-time, remotely filing medical documents, and has not yet been able to complete her college degree. She still suffers from a circadian rhythm sleep disorder, meaning she generally sleeps during the day and is awake all night.

She has never had a job that provides health insurance. Once she turned 26, we paid out of pocket for her health insurance, which cost up to $700 a month, even though it barely covered many of her expenses.

As a dual-income family, my husband and I spent our lives working and paying a lot of taxes. We are homeowners, conservative spenders, and have spent nearly a million dollars out of pocket for healthcare costs fighting this disease.

Recently, she was able to get a Medicaid policy via the ACA. It's not the best insurance. A lot of things are not covered, it can be a challenge to find providers, and you can spend months waiting for authorizations. But at least she has basic medical access.

It makes me sick to hear these cruel, disgusting Republican sycophants speak about Medicaid patients as if they are blood-sucking takers. Typically, I wouldn't wish a chronic illness on anyone… but I may make an exception this time.

We are not takers

We are not gaming the system

She is not lazy

This happened to her - by no fault of her own

We have probably paid more taxes than many billionaires

Many who find themselves on Medicaid are strong fighters who are just trying to survive. This disease put my daughter on a completely different path, a much lower trajectory than she envisioned for herself. She needs support right now, so when she does get better, she will be a positive contributor to our community, society, and country.

No one WANTS to be on Medicaid. It is not great. It is bare bones support with a lot of hassle. But it is better than nothing. It is survival.

Along with the brave Vets from our wars, kids who are born into poverty through no fault of their own, and the millions of others in our society who have been dealt a raw hand, we can provide this minimal amount of support to these strugglers.

If your heart won’t see it, then your wallet should. It is more economical to have people on this minimal amount of medical support than deal with them when they are too sick to thrive or survive. There are many experts who can prove this out, so if you are not a believer then please do some research.

This is our story. The passage of this bill is personal. There are millions of people on Medicaid with their own heartbreaking story. We need to protect our deserving citizens. The ridiculous claims that some Republicans are touting don't add up. They are liars after all. Vote them ALL out.