In a totally last ditch effort, I called the woman who’s managing my social security disability claim in the hopes that, I don’t know, maybe she can push my claim through so I can at least get state insurance again.
We were on state insurance, but the annual income requirements changed and now we’re just a few hundred dollars over the limit. We no longer qualify, no exceptions. Because I can’t work outside the home, we can’t afford any of the state market plans or even my husband’s company’s plan. We wouldn’t be able to afford rent.
Without insurance, though, I can’t continue treatment, which means I’ll never be able to work outside the home. I was doing better with treatment. Soon I’ll run out of my medications.
Disability usually takes a long time to be approved. Sometimes you’re denied even after appealing. I’ve already been denied once; my hope was that I could appeal and eventually be approved.
That doesn’t help me now, though.
I don’t know what to do. I’m scared, to be honest. I’m already flaring with treatment. My rheumatologist thinks I need to add on a medication or two. I know that without any treatment, I’ll be bedridden again; before I started treatment, I was bedridden and needed Mike’s help just getting dressed. I couldn’t work from home at all.
I hate getting caught up in grief, but this wasn’t my life at all before I got sick. I worked three jobs. I had a lucrative career. I went hiking and bowling. I played softball. Then I got mono from the Epstein-Barr Virus, and I never got better. It triggered my UCTD, which stole my life. I don’t go hiking. I can’t even play video games anymore, because using the controller hurts my hands. We’re struggling financially. Mike is my husband but also my caregiver, and he’s got his own health issues that need caring. (Yet he still stubbornly insists on doing things for me.) I have family who help when they can, but they’re struggling too.
Honestly, I went back to school not only to help me with marketing my books, but also so that, after I found the right medication combination, I could return to the workforce. I need to feel useful. Now I’m scared that I’m just earning this degree to feed my pride, meanwhile racking up more debt I won’t be able to pay off.
This illness stole all of my hopes and dreams. I wanted to have a family. Now I just pretend that I never want to have kids. I don’t know if my body could tolerate pregnancy and parenting. It can barely tolerate cooking a meal. Lately I’ve been in so much pain and buried under so much brain fog, I can barely focus on my school work. The material is difficult as it is. (Why do they make accounting and macroeconomics so hard? I mean, seriously.)
I want to fight for the future. I’m not finished yet, damn it. But people like me live in a limbo.
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.
It’s only been six days since Trump was sworn in as President. I knew things would start happening, and that it’d be fast, but I couldn’t have imagined how quickly.
Before Inauguration Day, Congress voted on their annual budget, which is normal. However, they re-allocated the ACA budget to miscellaneous. In Trump’s six days of office, he’s signed executive orders to:
give power to agency and executive department heads to “waive, defer, grant exemptions from, or delay the implementation of any provision or requirement of the [Affordable Care Act]” while he works on repealing it
pull federal funding from women’s affordable healthcare organizations that provide abortions, ignoring the fact that these same organizations also provide cancer treatment and other healthcare to low-income women, men, and teens
resume and speed up the Dakota and Keystone Oil pipeline projects, continuing to route them through Standing Rock despite environmental concerns, land treaties, and President Obama’s executive order to halt the DAPL and look for alternative routes
pull the U.S. out of the United Nations
withdraw the U.S. from the Trans-Pacific Partnership
ban refugees from entering the U.S., begin deportations, give police officers power to act as immigration officers, and block federal funding from sanctuary cities
allow torture of political prisoners, which breaks the Geneva Convention
begin building a wall between the U.S. and Mexico, which Mexico has refused to pay for; I suspect the ACA’s re-allocated funds will be paying for its materials, and political prisoners will be used for slave labor to build it
You know what solves it? When the economy crashes, when the country goes to total hell and everything is a disaster. Then you’ll have a [chuckles], you know, you’ll have riots to go back to where we used to be when we were great.
“Lenin,” he answered, “wanted to destroy the state, and that’s my goal too. I want to bring everything crashing down, and destroy all of today’s establishment.”
Trump has been leveraging our social, political, and working class issues, instigating the blame of our problems on disabled people, black people, Latinxs, and Muslims. He insists that the ACA is being taken advantage of by lazy people who don’t work. People who rely on the ACA and Medicaid for healthcare are veterans, single parents, people with disabilities, cancer patients, retired people, and low-income families. No statistical evidence suggests that any large percentage of people covered through the ACA are “lazy people.”
There’s a lot to do. I advise working locally. Know your community. Pick an issue or two you care about and commit for the long haul. And understand that as horrifying as this all is, millions stand with you. Find common ground, stand up for others—and know the enemy.
Shit is real here in the U.S., my home. Most of the people I know are either completely oblivious, in denial. They don’t see how dire things are. I’ve been following all of this and urging family and friends to pay attention. They won’t. I think, honestly, most of them just can’t believe anything like this can happen. They believe that our Constitution and government will protect us. The Constitution can only protect us if our government upholds it. Right now, our government is fighting amongst themselves. There’s little opposition from the Democrats against the Republicans and Trump’s Cabinet.
It’s possible that we mere peons cannot even begin to understand what’s happening to us. We just know that we don’t want it and we don’t deserve it.
I’m at a loss here myself. I read each executive order with growing cynicism and horror. To be honest, I didn’t want to believe Kendzior’s and others’ apocalyptic predictions before and around Election Day. I thought that by urging electors to vote against Trump would be enough, but now it seems that we were fighting the wrong battle. We should’ve been urging our senators and representatives to pass legislation to block all of the things that Trump promised during his campaign, protecting all of the people that Trump is trying to harm.
It might be too late.
I’m not giving up. I’m terrified, to be perfectly honest. With every executive order that I read, I find it harder and harder to focus on anything; writing and working as normal seems pointless in the face of what’s happening. When this has happened in other countries, millions of people died. It seems like a cleansing has begun: women, disabled people, non-white people, queer people, Muslims.
I still believe in fighting for our freedom. I come from a family of veterans and I will never dishonor their sacrifice and memory by giving up those freedoms. I will keep writing. I will send letters to the White House. I will put aside my phone anxiety and call my state Senator and Representative, and ask them to fight. I will start attending town meetings and make my concerns heard.