One of my greatest fears is falling. It’s not the height that scares me. It’s the fast lack of grip, the surge to the bottom. I don’t like being out of control.
Ironically, a recurring theme in my life is losing control. I never learn to let go and enjoy the fall, see where it takes me.
For the past four months, I’ve been fighting to keep my health insurance plan. My state changed the minimum annual income requirement back in March, and we’re now $400 over the mark. $400 is far from enough to cover the cost of a yearly deductible and monthly premium, plus co-pays and prescriptions. Yet in the state’s eyes, we should be able to afford it no problem. They don’t account for rent and heat. They don’t even look at your income after taxes.
We looked at my husband’s company’s insurance plan, too. Even though it’s a bit cheaper than one of the state market’s plans, we still can’t afford it.
We’re already struggling.
I’m really grateful that we had state insurance these past few years. Because of it, I was able to get a diagnosis and start treatment for my UCTD. Still, we can’t afford another plan, and we definitely can’t afford my treatment and monitoring without insurance.
I looked into several avenues, but they all came down to one thing: soon I’d be out of medicine.
Once I run out of medicine, my disease becomes aggressive. It isn’t long before I’m bedridden again and I’m unable to care for myself. To write. To live.
I felt myself spinning out of control. One of my other greatest fears is my disease. I’ve worked hard to get to where I am. I’ll be damned if I go back.
The fear is suffocating. My rheumatologist and I have determined that Plaquenil isn’t enough, that I need to add other medicines. Plaquenil has been so very therapeutic for me, but it’s not a magic bullet. I still have pain and stiffness, fatigue and brain fog, and other symptoms that may be related but definitely need further testing.
It doesn’t help that someone I love with an even more severe condition is losing her insurance, too. Chronically ill people rely on social services, but those programs are always the first to go when states need to make budget cuts.
I’m too scared to feel angry.
I have one last thing I can try. It’s a long shot, and I’m only going to have a small window. If I’m successful, it’ll be the net that catches me at the bottom. If I fail, well… I guess I’ll have to finally learn to let go.
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.
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.
Today marks 10 years since I got sick and didn’t get better. I have a lot of complicated feelings about the whole thing. 10 years ago today I felt a weird tingling and numb sensation radiating from my wrist to my elbow, and shortly after that it turned into joint pain. In the years that followed, each of my joints systematically became affected until I was completely disabled.
It’s been a long, exhausting journey—physically, mentally, and emotionally. I’ve been on Plaquenil and Prednisone for three months now. My disease is now under control; before I came down with the flu, I walked a whole mile—and didn’t pay for it. I walked a little over a quarter of a mile today. My plan was to walk the full mile over to Sandy’s, but she got sneaky and intercepted me. Still, it felt really good to walk—even though my anxiety was being an asshole and I was honest to goodness convinced that I was going to get hit by a car and die the entire time I was walking. 😂
I have Undifferentiated Connective Tissue Disease. Since being diagnosed in December, I’ve done some reading. My disease could go one of three ways: it could go completely into remission, never to return; it could stay UCTD, which would be manageable with my current treatment plan; it could become Lupus, a whole new ball game. Funny enough, I don’t worry so much about it being pre-Lupus anymore or sticking around, because Plaquenil has changed my life and as long as I can keep my health insurance, I’ll be okay. I do worry about losing my health insurance, though, because there’s no way I could afford these medications out of pocket, and no health insurance company would cover me under the Republican’s proposed replacement for the ACA. Without the ACA, I will be disabled again. Period.
Right now, though, I’m extremely grateful for my rheumatologist and the treatment plan he has me on. I’ve had few side effects from Plaquenil, and they’re definitely tolerable compared to debilitating joint pain, fatigue, and my other UCTD symptoms. Illnesses like the flu will trigger flareups, but they fade when I recover. In this moment, I have a happy ending—something I honestly hadn’t dared to hope for.
My plan right now is to keep taking my medication for as long as I can, and fight to keep my health insurance. For me and so many others, the ACA is the difference between life and death; being bedridden and writhing in agony is not living. Lately I’ve been living more than I have in the last 10 years, and I’ll go down swinging to keep it that way.
This morning my Instagram feed was full of pics about the upcoming Women’s March on Washington. Well, okay, books too, but the closer we get to the 21st, the more people are getting involved. This makes me incredibly proud, but also a little sad.
These days I’m lucky I can stand long enough to do dishes, never mind march for civil rights.
It doesn’t help that some of the slogans that people are using seem to reach out and pinch those of us who can’t march. I know they aren’t actually for us—they’re for those sitting by in apathy, doing nothing—but it still sucks that I can’t be there.
Still, I realized something.
These marches have historically been people more powerful joining hands with people less powerful to achieve the same goal. Every movement has been about someone stronger lifting up someone less strong—whether in voice, privilege, or ability.
It’s hard for me to let others do for me, when I’d rather do it myself. It’s difficult for me to just sit and watch, rather than participate.
I never thought I’d be sitting on this side of history; when reading about The March on Washington for Jobs and Freedom—AKA the civil rights march—as a kid, I always felt this burning passion inside of me. I knew, had I been born decades earlier, I would’ve marched right alongside those women and men. In reality, my body is the opposite of willing and able.
And that’s okay.
It’s also okay if you’re not marching, too.
You don’t have to explain why to anyone.
In your heart, you know what you stand for. You know what you believe and who you support. And you can resist in other ways.
Keep making art.
Keep raising children who love.
Keep posting selfies.
Keep making posters for your town.
Keep denouncing hate.
Keep spreading love, even if in “small” ways.
Because when someone hates you—for how you look, who you love, what illnesses you live with—the loudest torch you can carry is to keep living, in spite.
Let your fire blaze bright.
However, if it’s the cost of travel that’s holding you back from marching, there are many sister marches happening all around the world. I had no idea until I saw a few overseas ones this morning on IG. There are even several in Connecticut, so I might actually be able to go to one, depending on how I feel. Click here to search by your state or country.