What Will Happen to Me If Obamacare Is Repealed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In a very dismal but possible future, Obamacare—also known as the Affordable Care Act or ACA—could be repealed and replaced with Trumpcare (ACHA), leaving millions of Americans without healthcare.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This is what will happen to me if Obamacare is repealed and replaced with Trumpcare.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.

Why It’s So Hard to Ask

In 2016, I finally got my anxiety and depression under control by participating in trauma therapy for my PTSD. In November, that all went away. Every day brings a new lineup of surreal, horrific headlines. New policies take aim at me, people I love, and people I’ve never met but feel for nonetheless. Hate crimes are on the rise and I worry constantly for friends and strangers alike. I’ve been having panic attacks, nightmares, and just feel horribly anxious in general.

It’s trauma all over again.

I’ve been saying for weeks that I might need to have my prescription for Ativan refilled. Over a year ago, I said goodbye to all psychiatric medication because antidepressants don’t play well with my system. I also stopped taking Ativan because I didn’t need it; meditation, self-care, and getting enough sleep were working for me.

Yesterday I decided I was finally going to ask for an Ativan refill. I have a lot of anxiety surrounding asking for medicines because it’s been harder and harder to get refills for my pain medicine. The war on prescription drugs has made casualties out of patients who rely on them—people who follow the rules and safety guidelines.

It took a lot for me to ask. I felt a panic attack coming on from the second I left my house. It didn’t help that I finally lost my ongoing battle with the narrow walls in my driveway and gouged my car on my way out. Sigh. Then I drove right past my doctor’s office and had to turn around, which made me a few minutes late. My anxiety ramped up with each passing second. I decided not to ask.

After discussing my IBS and UCTD, though, my doctor asked if there was anything else he could do for me. He’s new to the practice and I switched to him from the APRN I’d been seeing. I really liked him after my first appointment; he’d been attentive and kind. Taking a deep breath, I told myself to just do it. It was okay to ask, I told myself. There’s no shame in asking for something I need.

“Okay. Um. I’ve been having a lot of trouble with anxiety lately, and I was wondering if I could refill my Ativan.”

There. I’d done it. I felt immensely proud of myself. Even if I didn’t need it, at least I could keep it in my purse. It was there just for reassurance. I could make it through any panic attacks while continuing my regimen of meditation, relaxation, and regular unplugging from social media.

“Ativan isn’t a good anti-anxiety medication to start off with,” my doctor said.

I nodded; I was completely open to trying something else if necessary, though I’d thought Ativan was the lightest of its kind. (Turns out Ativan is somewhere in the middle.) But then my doctor switched gears entirely, urging me to check with my rheumatologist about Tramadol and whether it’s the best pain treatment for me.

This confused me, because I’d thought all of my doctors were in agreement that I’d stick to Tramadol as needed because it’s working for me. My rheumatologist had told me that in bad weather, I’d still have flareups, so Tramadol and Advil on those days were okay. But my doctor was talking as if he wanted me to stop Tramadol completely.

I also felt like he was brushing off my anxiety, because he suddenly said he’d be back in a few minutes. I started to panic, because not only was I not getting an Ativan refill, but it also looked like I was losing Tramadol. Again.

Plaquenil, Prednisone, Tramadol, and Advil are the medicines that give me quality of life. They’re the difference between being bedridden, wracked with pain, and actually getting out and living. When it’s a constant fight to keep the medications you need in order to have a good life, it can be emotionally crippling when someone threatens to take them away. There is nothing I fear more than my pain forcing me back into bed. I don’t want to go back to needing my husband to dress me every day. I would prefer to have Tramadol on hand when the weather gets nasty and my joint pain flares so that I can continue living.

I’m tired of being brushed off or treated as if I’m doing something wrong when I ask for medicine—especially when I hadn’t even asked him for Tramadol. He’d refilled my prescription the last time I saw him and I still have plenty left because I’m not taking it every day anymore.

I pulled myself together, hoping that he’d come back soon so I could just get the hell out of there and do my cry thing. When he came back, he brought samples of an IBS medication. He also told me that he would refill the Ativan but he was also prescribing me an anxiety medication called Buspirone that I had to take twice a day.

“What is that?” I asked warily.

If you’re new to my blog, you might not know that before I got treatment from a trauma-certified therapist, my previous mental healthcare practitioners had loaded me up with various psychiatric medications over the years. Every single time, I had awful side effects from them. It didn’t matter which class they were from, how “tried and true” they were, or how low the dosage. These medications simply make my anxiety and depression worse. I avoid them like the damned plague. (However, they do help lots of people. They just don’t work for my particular condition or body chemistry.)

“It’s an anxiety medication,” he said.

“Yes, but…” I took a deep breath. I really didn’t want to get into my history—my anxiety was already through the roof—but I needed to explain. “Okay. Look. I was sexually assaulted. But I didn’t get the right kind of help at first. I saw lots of different practitioners whose solutions involved just piling antidepressants on me. And I always get very bad side effects from them.”

My hands shook and tears rolled down my cheeks.

“And then I started seeing a trauma-certified therapist, who helped me so much. I got off all the meds and I even stopped taking Ativan. It’s just…” I swallowed hard. “This is going to sound silly, but my anxiety now is coming from everything going on. With the healthcare act…”

He nodded. “Definitely. I understand.”

I exhaled. “Maybe I should just avoid both of these medicines altogether. I’m just very, very wary of them—though I never had any trouble with Ativan.”

“Here’s what I’m going to do,” he said. “I’ll take off the Buspirone and refill the Ativan, but I don’t want you taking it all the time.”

I shook my head. “Oh, no—I understand.” Benzodiazepenes can be highly addictive, and can even be fatal. It’s super important to follow dosage exactly. (Not that it’s never important to follow dosage, but I’m sure you know what I mean.)

“I’m also going to refill your Tramadol, but you need to talk to your rheumatologist and see if he thinks it’s best. I’ll see you in June and we can stop the Tramadol.”

My head spinning, I held up a finger. “I don’t need the Tramadol refill yet,” I said. “If I were to take one every day, I still have about two weeks’ worth left. Can I just call you when I’m ready?”

“Yes,” he said. “I will refill it once more, but you need to talk to your rheumatologist.”

He offered me water and told me I could stay in the exam room for a few minutes to collect myself. He was very kind, but I felt mortified. The panic attack I’d been avoiding all day had basically sideswiped me in front of my doctor—which made me worry that I looked like a hot mess. Anxiety is a liar, so of course I started worrying that it looked like I’d just faked the crying so I could get the medicine. I didn’t want to blubber, dammit. I wanted to be able to calmly discuss my needs. I wanted to be able to discuss my history of trauma and bad experiences with psych meds without panicking, without tears and numb hands.

I scheduled my followup, then went to pick up my prescriptions. Amongst the Ativan and other things was the Buspirone that I’d thought we’d agreed to leave for now. I realize I don’t have to take it, but now I’m worrying that if I don’t, he’ll think I’m just making stuff up.

Today I looked it up. It acts on neurons and serotonin the same way antidepressants do. It’s clear that it’s not a good fit for me. I really don’t want to even try it, because other than the world being on fire, I’m actually in a really good place. Once again, my problem isn’t chemical—it’s trauma.

Last night I had another panic attack. I took an Ativan and, 20 or so minutes later, was calm. I watched The Shining. The tension in my neck was gone. I slept without nightmares.

Of course I still have to practice self-care. I still need to unplug, keep firm work hours, treat myself to good sleep hygiene, etc. I may even need to schedule an appointment with my therapist, although last I knew she was only working one day a week at the practice and that was difficult to coordinate because we only have one car (which Mike primarily uses because he works full-time outside of the home).

You can do everything right and still need help, and that’s totally okay.

Even though asking for Ativan was one of the harder things I’ve done, I’m really glad I did.

Setting Up a Spoonie Couch Office

via Unsplash

Chronically Creative: Creativity and Lifestyle Tips for Spoonies

I say all the time that, while I’d definitely rather not be chronically ill, my disease did shove me onto the path of being an author. Before I got sick, I was only dancing around writing; I wrote for myself and sometimes posted things online, while working 10-16 hours a day as a web designer and social media consultant. When I had to leave the workforce, I started writing full-time. I was laid up most of the time anyway; I might as well be productive.

Since then, I’ve discovered lots of tools and tricks to assist me in my career. I’d like to start sharing them weekly, as well as interviews with other creative spoonies and some lifestyle tips. I’ve been wanting to do this for a while, but I’m kind of terrible at keeping schedules and staying consistent—mostly because being chronically ill is a full-time job in and of itself. So these Chronically Creative posts might not be weekly, but if you enjoy them and find them useful, I’ll try my best to do them as often as possible.

This week I’m sharing how I set up my own couch workstation or office.

Disclosure: The links in this post are Amazon affiliate links. I earn a small commission from your purchase, which goes directly to my writing business. Your support is much appreciated!

Since I’m often laid up on my couch with an ice pack, heating pad, or hell, my electric blanket, I’ve been doing most of my writing there. I’ve had to find a balance between being comfortable and creating an ergonomic setup to prevent any further damage to my joints.

I work on a MacBook Pro, with my couch reclined just enough so that my legs and feet are propped up. Behind my head, I tuck a flat throw pillow for support; otherwise I tend to lean forward, especially when I’m super into what I’m writing. I typically wear my wrist braces while using the computer, and often have my TENS machine handy for a nice massage on whichever joints are being assholes that day. Since painkillers tend to make me loopy or sleepy, I try to use other methods of pain management while working, which I’ll share as well.

Please be sure to consult your own doctor to create the best setup for your individual needs.

Wrist Braces

Over the years I’ve tried many wrist braces, but the only ones I can stand wearing are 3M’s Futuro for Her. I originally found them at Target. Unfortunately, you have to purchase the left and right braces separately—though I do suppose that’s because the average person has arthritis or carpal tunnel in one or the other.

They come in black or pastel blue; mine are somewhere between white and blue because I’ve bleached the hell out of them. My hands tend to get sweaty when I sleep with them on, okay? Not to mention I don’t have washer/dryer hookup in my apartment, so when I’m in a pinch I soak them in a bucket of bleach in my tub.

I can’t recommend these enough. I’ve had them for years and they’re well past due for a retirement and replacement. Previous braces I’ve had were too scratchy or immobilized my fingers too much to type. These keep my wrists straight so that I can continue using my laptop. (Someday I’ll get me a fancy iMac, with its sexy ergonomic keyboard and mouse. Someday!)

Lap Desk

I bought my first laptop back in 2006—a clunky Gateway that I was super proud of. I was living with my grandparents and didn’t have a desk at the time, so I often worked on a TV tray in the living room or propped up in my bed. I finally caved and bought a ridiculously flimsy plastic lap desk at Barnes & Noble. It eventually cracked and I replaced it with a laptop desk on wheels that I could use from the couch. I still needed something for when I was bedridden, though, so I finally broke down and got a new lap desk.

It’s so old, I honestly couldn’t tell you what brand it is or where I got it. Probably Target, because I’m a junkie. Mine is like a vinyl, and not really ideal for keeping your laptop cool. When we got my sweet Biz Noni a laptop, my sister and I bought her a lap desk with a wooden surface. I’m not sure of the brand either, but this one is pretty close, as well as comparable in price.

Between my wrist braces and lap desk, I’ve got the perfect (mostly) ergonomic setup right in my living room. The lap desk can be tucked away behind my accent table, and my laptop can be put away in my office. (Eventually I’ll do a post on my office setup—but first I need to get in there and reorganize, because it’s become a disaster area again since I started working on the couch.)

Ideally, I’d have an iMac on an actual desk, with a nice comfy chair. But this setup works for me for now, and that’s what’s important. Like I said, I also tuck a pillow behind my head to keep from straining my neck and shoulders. Sometimes I take my laptop, desk chair, and Ergobeads wrist rest and work from the kitchen table.

They also make a cushion for your mouse, but I don’t have mine anymore since I haven’t use a mouse in ages. I absolutely love my Ergobeads and highly recommend them, as they’re supportive even if you don’t have wrist braces and are working from a laptop or even using a regular keyboard.

In case you’re curious, this is my office chair.

I originally purchased mine last year from Walmart, which got it from Overstock. It appears to be only available through third-party retailers now. It’s not quite as shaped to my back as I’d hoped, but it’s still pretty comfortable—especially considering it was about $140, which is cheap for an office chair IMHO. I got it to go with the desk my aunt gave me, but unfortunately the seat is too wide, so I usually use it with my writer’s desk hutch thing. Brain fog is hiding the actual name for both desks right now, so I’ll try to update this when it comes to me.

Pain Management

I’m going to keep this section short and sweet, as this post has gone well over 1,000 words and I’d originally planned on it being much shorter.

Because I get a limited supply of Tramadol (not to mention it tends to be binding on the GI system), I try to use non-narcotic pain management during the day. Never mind that Tramadol can make me woozy like I’ve had a glass of wine, and some of the stronger painkillers make me outright loopy or sleepy.

My joint pain is migratory, so it’s important that I have a medicine that can target all of it at once or different tools that I can use in different areas. Hands down, my favorite is my TENS machine. I got mine a couple years ago at the suggestion of my friend Melanie, and it’s been a lifesaver. It’s so small and discreet, I’ve even taken it with me to doctors’ appointments, while running errands, and on trips.

I also have a heating pad that can be used for moist heat, too, using a special insert. I learned to appreciate TENS machines and moist heat packs during physical therapy. While PT didn’t help my hip, those sessions at the end were heavenly.

The cover is removable and washable, and the pad itself is super flexible. I’ve tied it around my waist to use on my lower back, and my leg and waist to use on my hip.

When multiple joints hurt and I’m not going anywhere that I will mind the spicy scent, I use Tiger Balm. My rheumatologist was actually quite pleased to hear that it’s sold here in the States and that I use it frequently.

I prefer the clear balm, because it doesn’t stain and it’s just as potent as the red. It does have a strong scent, though, so I’m not a huge fan of wearing it while out and about.

Last but not least, my longtime go-to for discreet and long lasting pain management are ThermaCare patches and heatwraps. Unfortunately, they stopped making the wrist ones, though I can sometimes find the CVS version. I live by the multi-purpose patches, which work perfectly for my hips.

I like these because the heat doesn’t stop if I have to get up or run out. Though I usually wear them to bed, they’re just as handy during my workday.


Did you find my tips useful? Please let me know! I hope you enjoyed this post. Let me know in the comments if you have requests for future Chronically Creative posts.

Step by Little Step

via Unsplash

I’ve been taking Plaquenil and Prednisone for my UCTD for over four months now. For a little while, I was having some moderate anxiety: fatigue, feeling frozen, heaviness in my legs. I thought it might be Plaquenil (or even Tramadol withdrawal), but I haven’t had any of those symptoms in a while and I’m still taking Plaquenil (with Tramadol as needed). I think I might’ve freaked myself out about it, too, and it sort of became this brutal cycle. But my anxiety is relatively tame and my meds are working—all good things.

The temperatures and barometric pressure have been all over the place lately, as usual in New England. It snowed in March and we’ve been getting rain this month, along with random hot days. This has been killing me, but the difference now is—thanks to Plaquenil and Prednisone—I just take some Advil and Tramadol, and it’s enough. Usually, anyway.

Sometimes it’s not.

I’ve been having lots of trouble with my wrists and hands lately. For the past decade, I’ve struggled with severe pain in all of the joints in my hands, but this is a different ball game entirely. For quite some time now, I’ve been getting numbness in my ring and little fingers (which I’ve been ignoring, haha). In the past few weeks, though, it’s progressed to burning, tingling, and icy-weird-ness in both of my wrists and all throughout my hands. It sounds like carpal tunnel, which could easily be caused by the inflammation in my tendons.

I kinda always knew this would happen, eventually. I mean, I am an author, and before that I was a web designer. There are few hours of the day that I’m not hacking away at the keyboard. I guess I just thought I was years away from having to worry about it. Then again, the possibility was mentioned to me a decade ago, so I guess it would’ve been years away then. 😂

The only thing that really seems to help are my wrist braces, which I usually try to wear while using the computer for long periods of time. For the longest time, I was sleeping in them and that seemed to help, but I’d stopped because my wrists weren’t hurting anymore. Now I’m back to wearing them again, and I’m even bringing them everywhere with me because I need them almost all the time. It’s not a big deal, per se, but it’s kind of odd—to me, anyway—how quickly this has progressed. I had the numbness for like a year or so and then bam! Tingling and burning.

I’ve been meaning to ask my rheumatologist, but my appointment keeps getting bumped back for one reason or another. I see him this week, though, so we’ll see what he says.

Felt like a selfie, so. #disabledandcute

A post shared by Elizabeth Barone (@elizabethbarone) on

Aside from weather-related flareups and possible CTS, I’m doing okay. I’ve been super tired lately, so I’m wondering if my B12, D, or iron levels are low again—spoiler alert: they usually are—but even that’s manageable with cat naps, afternoon teas, and my old fallback Emergen-C.

I’m looking forward to the weeks ahead as the weather continues to warm and I’m able to get out and do more. Last week I went to the zoo with Sandy and the kids; a few weeks before that, on a random nice winter day, I walked a mile.

Slowly but surely I’m getting my life back.


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Quoted on TODAY Show and Washington Post

via Unsplash

Sometimes something happens and you can feel that it’s A Big Deal—a milestone. Last night I found out through a couple people on Twitter that I’d been quoted in the media.

It’s super important to me that people with chronic illnesses have our voices heard, that we aren’t erased or romanticized. Seeing my words in the media—having my voice heard on this level—is surreal in a way that I can’t even explain. It’s also made me stop and think about a couple things.

I never knew I’d be an activist. Sure, I’ve always been passionate. (Just ask my parents and partner.) I’ve also long been shy and, for quite a while, lost my voice. It wasn’t until more recently that I’ve begun speaking out. I want awareness for people with chronic illnesses. I want able-bodied people to treat us better, to stop judging us by how we look or don’t look. I want better accessibility. (Yesterday I went to a restaurant and their ladies’ restroom barely fit me, never mind a wheelchair.) I want so very many things… and so I think I have to sit down and come up with some goals, focus my efforts a bit more than just sharing my story and speaking out when I come across something wrong. I want to do more.

It’s also made me stop and think about how much my words matter. As a writer, I think I’m maybe a bit more aware of the weight of my words. Seeing them in the media puts it into a whole different perspective, though. I’ve always strived to be myself on social media; I’m going to swear and share cat pics, but I’m also not going to join the mob with pitchforks when there’s a tweetstorm. I want to be professional but firm, serious but kind.

It’s truly surreal to see your words out in the wild, to know that they were on how many thousands of TV screens in an instant. My life hasn’t changed—I didn’t get an influx of followers or anything like that—but in 140 characters, I helped people see how that Cosmopolitan article was focusing on the wrong inspirational story. I’ve been part of the conversation for years, but I feel like this week, I was truly heard—along with so many others in the community.

Hey, I wonder if maybe now Washington Post will accept my article about opioids being a lifesaver for people with chronic pain. 😉