I’ll Go Down Swinging My Cane

Photo by Chris Barbalis on Unsplash

When I got sick 10 years ago, I wasn’t planning on getting sick. I was actually planning to grow my web design business, save up the good salary I was making, and have a family. I wanted three kids. I’d only just started dating Mike, so I can’t say I was planning on marrying him, but I was an 18-year-old woman with hopes and dreams. I didn’t plan on getting sick. My goal was not to leave the workforce and become homebound because of my illness. I wanted to travel, to eventually set down roots and buy a house. I didn’t plan on going on state insurance because my husband and I couldn’t afford his company’s plan. I didn’t foresee setting aside my dream of having a family.

Let me be clear: I love my life. I’m happy that, even though I’ve lost a lot, I have been able to pursue my other dream—being a storyteller—even while bedridden. But I did not plan on getting sick.

No one does.

Mothers don’t hope to give birth to a baby who loses a kidney before he can even walk. Veterans don’t think they’ll spend their retirement years battling cancer instead of enjoying their grandchildren. Hardworking women who once worked multiple jobs don’t pencil in getting emphysema and pneumonia on their schedule.

But it happens, because life happens.

Today the Senate voted to continue working to repeal Obamacare and replace it with Trumpcare. The proposed bill blocks people with pre-existing conditions from getting insurance, takes away funding from state insurance that helps low-income people, and all but cripples healthcare assistance for the elderly and disabled.

All of this right smack in the middle of my disease changing.

Aside from worrying about family members and friends who will definitely be affected by the Senate’s decision today—possibly mortally so—I’m concerned about me. Because not a day goes by that I don’t wonder how different things might be for me if I hadn’t gotten sick. Would I have a mortgage and three kids? Ironically, if I hadn’t gotten sick, I could afford to pay for my healthcare.

I didn’t get a chance to really blog about it, but I’m having bladder and nerve issues that may be related to my UCTD—that may indicate that it’s developing into Lupus. I’m waiting on labs that my new rheumatologist ordered to check on my kidneys. I’ll probably be seeing a urologist to figure out what’s going on with my bladder; a neurologist ruled out carpal tunnel and said she thinks my nerve pain is from my autoimmune disease. My rheumatologist said that Plaquenil can be great for some things but not others; I may be looking at adding another medication to my regimen.

More tests, followups, and medications that I cannot afford out of pocket.

Under Trumpcare, I’d be blocked from getting insurance because of my pre-existing condition. Right now, I truly don’t know what’s going to happen to me.

And I’m trying like hell right now to not think about the people I know who will actually die without their medications and treatments. Because if I do, I won’t be able to breathe.

Today my country made a shameful, disgusting decision—all because part of the government can’t stand that a black president dared to try to help sick, disabled, and low-income people. They can’t bear to let Obamacare exist, just like they couldn’t bear to allow the original bill to pass. Instead of trying to fix the things that are wrong with Obamacare—like the annual fee for uninsured people that, ironically enough, the GOP helped create because they bickered over the original bill—they’d rather burn it all down, out of spite. They’d rather not examine the exorbitant cost of healthcare and medication in this country. And now 24 to 32 million Americans face losing healthcare. Of those 32 million, a good percent of them will die without it.

I cried all afternoon. My eyes are swollen, my heart is broken, and my autoimmune disease continues to attack my connective tissues, nerves, and bladder. I don’t know what’s going to happen to me or my loved ones. I keep trying to find some hope tonight, something to hold onto. Because I’m one step closer to losing my healthcare, but it’s not over yet.

What Will Happen to Me If Obamacare Is Repealed

Photo by Samuel Zeller on Unsplash

In a very dismal but possible future, Obamacare—also known as the Affordable Care Act or ACA—could be repealed and replaced with Trumpcare (ACHA), leaving millions of Americans without healthcare. Including disabled and elderly people. Including me.

This is what will happen to me if Obamacare is repealed and replaced with Trumpcare.

At first, I’ll be okay. It’ll take some time for things to go into effect. My doctors will prescribe me months’ worth of my medications in advance and I’ll fill them at the pharmacy before my insurance officially lapses. Like a dystopian YA character, I’ll have a precious stockpile.

Eventually I’ll run out, though.

The medication that was slowing my immune system’s attack on my connective tissues will go out of my system. I will be crippled and debilitated, trapped in bed again with unbearably stiff and aching joints. But I won’t be able to turn to my pain medicine, because that will be gone too. I’ll try to make due with heating pads, Advil, and Tiger Balm, but that’s like slapping a Band-Aid on a stab wound. My hands will be too stiff for me to write, so I’ll no longer earn a living.

Family members with cancer and degenerative disc disease won’t be able to give me their extra pain medicine, because they’ll have run out, too.

When I need to shower, dress, or use the bathroom, my husband will have to help me again. Usually I’ll be alone, though, because he works full-time. I’ll spend most of my time in bed or on the couch.

We won’t be able to afford the health insurance his employer offers. Under Obamacare, it was already expensive, but after Trumpcare, the rates skyrocketed. Insurance is now precious like gold. And the rule of supply and demand is high prices.

We can’t afford my medications out of pocket, either. A two-month supply of the main medicine I require is $800 before Trumpcare. Pharmaceutical companies recognize the high demand and raise their prices, too. We’re forced to choose between rent and groceries or my medication. We choose shelter and food.

I’m worse off than I was before I got a diagnosis and started treatment. I can’t afford to see my doctors to at least monitor my disease. It develops into full-blown Lupus and begins attacking my organs. My kidneys shut down. I’m hospitalized and the bills begin racking up. My family rallies to try to help, but they’ve also got to take care of my grandmother who has cancer and can no longer afford her treatments because of Trumpcare. There just isn’t enough money.

I leave the hospital with prescriptions I can’t fill and an overwhelmingly high bill that I’ll never be able to pay off. I’m still making monthly payments on my student loan—a degree that’s been useless to me in part because of my disease.

I’ve tried to stay positive. I’m a fighter, after all. A survivor. But everyone around me is suffering, and I can’t even help myself. My husband is so stressed, his health worsens. His arthritis and migraines become completely debilitating and he can no longer work to support us.

We move back in with my parents. My dad stays home full-time to care for my grandmother. My mom is the only one working in the family, and her insurance only covers her and Dad. There isn’t enough money to take care of all of us. My sister and other family members try to help when they can, but they have people who rely on them, too.

And it’s not only our family that is affected.

Across the country, people become sicker. The massive cuts to welfare prevent them from getting assistance. The entire nation goes into a health crisis. Only the very wealthy can afford healthcare. Crowdfunding pages are set up, and some good Samaritans donate, but after a while people get tired of seeing sick people asking for help on Facebook. The donations stop.

The U.S. goes into a widespread state of depression. Millions of lives are lost, deaths that could have been prevented with affordable, comprehensive preventive healthcare. Disease spreads—previously obsolete due to vaccinations, but people can no longer afford them.

People who are wealthy and still healthy flee the country, immigrating to better places. The once proud United States declines. There is no longer an American dream—just a wasteland resembling a third-world country.

That’s because we are one now.


America doesn’t become great by moving back. Only by progressing do we become the place of dreams and great things.

I need able-bodied people to fight for me, my grandmother, my godson, and other chronically ill and disabled people. I need you to do more than just passively share things on social media.

You need to call your senators and insist that they oppose Trumpcare.

My senators have been fighting this from the beginning. There is nothing I can do other than sit and watch, wait to see what my future will be. I’m begging you.

There’s still time. We can still turn this around.

Call your senators and fight for us.

They Came for the Muslims, and We Said No

Friday morning, a friend texted me: “Anti-Muslim hate group is holding a rally in Waterbury tomorrow. Call me!” I was barely awake but I was pissed. I spent the rest of the day getting ready to protest the rally.

Until this weekend, I’d never been to a protest. I’ve wanted to go, but distance and/or chronic illness usually prevent me. Even Saturday was difficult, standing on my bad hip for two hours straight. But it was worth it.

The Southern Poverty Law Center recognizes ACT for America as a hate group. They’ve long spread anti-Muslim propaganda, but on Saturday they held rallies nationwide in protest of Sharia Law.

Post 9/11, I started studying Islam thanks to my 8th grade teacher, Mrs. Barra. I’m no expert, and I’m sure an actual Muslim can explain it better, but ACT—and many others—are twisting Shari’a to further their anti-Muslim agenda.

Shari’a is the act of following your divine path, or God’s will. At its core, Islam is made up of five pillars, or guidelines for living:

  • faith
  • prayer
  • fasting
  • pilgrimage
  • charity

Shari’a is open to interpretation. So yeah, some people do use Shari’a to do terrible things. Those people aren’t true Muslims, though… and no one is trying to impose anything called Sharia Law in the U.S., anyway.

via Connecticut Representative Elizabeth Esty

The hate group discusses things like female gender mutilation and oppression of women—which Muslims already condemn. I mean, if you’re really concerned about women’s rights, you should probably focus your energy on assisting Planned Parenthood and keeping the ACA. Usually, though, people railing against “Sharia Law” are just using it as a thinly veiled excuse to abuse Muslims.

Unfortunately, people want to stay angry and ignorant. They want someone to blame for horrible things that happen, and they’ve made Muslims their scapegoat. It takes two seconds to Google the basics of Islam or—gasp—ask an actual Muslim.

On Saturday, several groups in my home city came out to support Muslims, including the ACLU. I wasn’t happy that we had to be there in the first place, but it was truly heartening to see so many different people standing with our Muslim sisters and brothers. It gave me hope.

One man invited people to attend one of the mosques, and another woman told the crowd that her organization will gladly come talk to groups about Islam. Muslims weren’t the only speakers, though. Leaders from local temples, churches, and other places of worship spoke about unity. Several people also implored non-Muslims to speak up if they ever see or hear something wrong. Too many people talked about being afraid to go out in public, but one woman said that, looking at the people who came out, she wasn’t scared.

The protest went well, even with the teachers’ 5K literally running through the rally and protest. Though a couple people walked by and yelled stupid shit at us, everyone was safe. Like my father-in-law said, it was too bad that the people supporting ACT wouldn’t just walk across the street and listen.

Though I walked away with sunburn, I also walked away with hope. I saw a couple people I know there, supporting Muslims in our community. I saw a little boy bravely lead a chant. I saw people in my city—a city that can too often keep its head down and ignore what’s happening—come together.

This weekend they came for the Muslims, and the people of my city said fuck that.