People Like Me

I’ve been in a daze. This morning I found out I don’t qualify for my university’s student health insurance plan because I’m an online student. It’s for on-campus students only.

It was also my last option.

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.


Photo by Misael Nevarez on Unsplash.

January 2018 Goals

My writing and personal goals for the month of January!
Photo by Cathryn Lavery on Unsplash

It’s been a while since I sat down to set formal goals for the month. I used to be really diligent about it. For the past year or so, I’ve had a general idea of what I wanted to accomplish, but didn’t keep track. I’ve decided to come back to that practice, starting now.

Writing down my goals keeps me focused. It also keeps me from piling too much on my plate, because I can look at what I’m currently working on and ask myself if I really have the room for it. I’ve gotten really good at saying no, but I’d like to keep that momentum going.

Considering my goals for 2018, this month I’d like to…

  • Buy an insurance plan. It looks like I’m going to be able to afford my university’s student plan, which covers me through August. I have angels in heaven and here on Earth, because originally this was going to be a long shot. Once I’m enrolled, I can see my rheumatologist about adjusting my treatment plan, I can have urology tests to see if I have interstitial cystitis, and I can finish my dental crown. Oh, and I can also afford my medication. One step at a time, though.
  • Publish A Disturbing Prospect. I’m not gonna lie—I’m nervous about this release. Every launch gets me anxiously excited, but A Disturbing Prospect is a lot darker than my previous books. I mean, it has a freakin’ trigger warning list. I wrote this book for revenge, though, for the real-life Lucys who never received justice. Also, I have a much lighter book releasing soon, probably in the spring, so that should balance things out.
  • Start writing something new. I can’t decide whether I want to re-write the sequel to A Disturbing Prospect, or write my second chances f/f book shop romance (which has a title but I’m not telling yet). I think I’ll decide by outlining both. I got an Amazon gift card for Christmas and used it to buy Romancing the Beat, which should help with that.
  • Survive Mod 3. The new semester starts January 8th. Because I’m in an accelerated online program, semesters are broken into two eight-week modules. This mod, I’m taking accounting and macroeconomics. Then I’m diving into business law and—dun dun DUN—algebra. Scary shit. So my goal is to not drop out this semester. 😂 You might think I’m kidding, but all four of these classes intimidate me (though I’m excited about business law). I’m also a perfectionist who doesn’t want to do anything unless I’m really good at it. I am a complicated creature.

That should do it.

What are your goals for January? Let me know in the comments!

Free Fall

Photo by ian dooley on Unsplash

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.

Never have.

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.

Never will.

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.