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.

My Goals for 2018

Photo by NordWood Themes on Unsplash

I’ve been in a fog lately.

There it is. I’m admitting it.

Honestly, from the second I found out Mike and I are losing our health insurance, I’ve been upside down. Even though we’ve mostly got it figured out now, I still can’t right myself. Between the flare I’m in, stress, and self-doubt, I’m having a hard time caring about setting goals for the new year.

Which is precisely why I need to get my ass into gear and get something down on paper, so if nothing else, I’m still moving forward.

The best thing about goals is things change; nothing is ever set in stone, whether life happens or you simply change your mind. I need to remember that, rather than getting caught up in the mindset that I have to stick to my goals or die. Now, don’t get me wrong. You want to set goals and try to stick to them. But it’s not the end of the world if things don’t work out. I’m breathing proof of that. Pretty much nothing goes my way, yet I’m still living my lifetime goal: be an author.

Setting goals is more like drawing a map for yourself. You’re going to get where you need to be, but you need some kind of route to follow. If you happen to make pit stops or find shortcuts, it’s okay to change your plans.

In 2018, I want to…

Write four novels. I have a loose idea of what I’m writing. I’d like to write at least two more books starring Cliff and Olivia, depending on how A Disturbing Prospect sells. Most of my beta readers loved it and are begging me for more, so I think it’ll do well in the market.

I also have an idea percolating for another f/f romance. I don’t know whether it’s a standalone or maybe a series of novellas, but these characters have been bugging me for a year now. I also sort of mentioned them in the second chance divorce romance I’m almost done writing, so I think it has to happen.

Novellas would work really well for me, considering I’m in school full-time. We’ll see; first I want to finish up my WIP and release A Disturbing Prospect.

Finish my first year of my Bachelor’s degree. My first semester went really well, but I’m nervous for the spring semester. I’m taking more intimidating courses (including algebra, send help). I need to remember the big picture: I’m getting a marketing degree so that I can better write and sell my books, not so that I can get straight “A”s and sit on the Dean’s List every semester. I’m a perfectionist but need to remember that progress is what’s most important here. As a friend reminds me when I start to obsess, “C”s get degrees!

More than likely, I’ll pass that algebra class with a C, haha.

Find a better treatment plan for my UCTD. I’ve been on Plaquenil for over a year now and, though it’s been a game changer, it’s not a magic bullet. My rheumatologist wants to try some other medications; I can’t start until I have permanent insurance, though, because they require lots of lab tests and monitoring that would otherwise be expensive. Right now I’m back on Prednisone (which makes me hungry and packs on the pounds), brand-name Plaquenil twice a day (the generic was giving me diarrhea and heartburn like whoa), Advil liquid gels, and Tramadol (which makes me constipated). My pain level has been at a seven or eight; today it’s at a tolerable five, six.

My goal for 2017 was to get down to a four, and I did for a little while. A lot of people with UCTD/Lupus say that Plaquenil can stop working after a while or isn’t totally effective. I’m willing to do whatever it takes to get back to that four. At that level, I can function. It doesn’t take a lot of energy to fight that level of pain, so I have battery life for other things: writing, family, etc.

Now that I’ve seen what it’s like to live with less pain—now that I know I can have my life back—I want it more than anything else. Before, it was just a dream.

In previous years, I’ve set all kinds of goals, but I think these three are just what I need right now.

What are your goals for 2018? Tell me in the comments, and have a safe and happy New Year’s celebration!

Can’t Win (Plaquenil, 1 Year)

My Christmas cactus that I got the same day I started Plaquenil.

Today I’ve been on Plaquenil for exactly one year. While Plaquenil and Prednisone worked really well for my joint pain, both gave me some unfavorable side effects. Prednisone made my blood sugar skyrocket and threw some of my other labs off, so I had to wean off it. Plaquenil did okay on its own, but for some reason the GI side effects—diarrhea, heartburn—just keep getting worse. I had to come down to one pill a day instead of two.

I’m feeling it.

My rheumatologist said that if I flare, she’ll put me back on Prednisone, so there’s a good chance I’ll be starting it soon. I want to feel better—and I really want my hands and hips back—but I’m scared of the high blood pressure, freaky blood sugar, and weight gain. So I may have been holding off on making that phone call.

It feels like I can’t win.

This may be TMI, but Plaquenil can be an outright asshole. At first it seemed like it wasn’t getting along with dairy, but now it seems to give me diarrhea randomly. Heartburn, too. You’d think those are minor side effects, but trust me, they can quickly ruin your day. And your night.

SIGH.

Still, I look at posts and pictures from a year ago, and I know these two medications have saved me, side effects be damned. It comes down to a choice: would I rather debilitating joint pain and fatigue, or random bouts of diarrhea and heartburn, paired with high blood pressure, blood sugar spikes and crashes, and hot flashes?

via GIPHY

I’m trying to hang in there until my rheumatology appointment; playing phone tag is not my idea of fun, and I get shitty cell service in my apartment, which makes it even worse. I’d rather speak to her in person and go over our options. (She’s wonderful on the phone, too, but connecting is always a challenge.)

My appointment is almost two weeks away, though, so I’m gonna have to call.

It doesn’t help that I’m facing losing my health insurance, but that’s a whole other post. The gist of it is, my state changed its income regulations this year and we are now just a couple hundred dollars over the requirement. Yet we can’t afford a monthly premium and we sure as hell can’t afford appointments and prescriptions out of pocket. A friend suggested I can appeal the denial, but we weren’t denied—I’m stuck in an Access Health CT website loop. (If you live in my state, you know what I mean.) So that’s another phone call I’m dreading but have to make.

via GIPHY

It’ll work out, though. In the meantime it’s all about managing my pain and anxiety.

On the plus side, if I start Prednisone again, I’ll be able to take notes for my classes. (My hands have not been digging this whole pen holding thing.) I’ll also be able to type faster.

And did I mention that my beautiful Christmas cactus is now a year old? It’s now so full and there are several vibrant blooms (with dozens more budding). A month ago, it didn’t seem like it was going to bloom at all. A year ago, I wasn’t sure I could keep it alive. (I’m all right with succulents, but this one came from a pharmacy and I didn’t know how it would do.)

There’s a metaphor in here about patience and faith. I think.

What Does It Mean to Have Undifferentiated Connective Tissue Disease?

Photo by Vladislav Muslakov on Unsplash

In December 2016, I was diagnosed with Undifferentiated Connective Tissue Disease (UCTD). I’d been suffering from symptoms for a decade, and the diagnosis was a relief. Finally, I could start some kind of treatment and maybe get some of my life back!

There are a lot of misconceptions about UCTD, and autoimmune diseases in general. Part of the problem is, we don’t know a whole lot about them. We do know that the immune system gets confused and starts attacking healthy tissue. This can cause a lot of problems.

My disease, UCTD, is like the center of a three-way Venn diagram, with Rheumatoid Arthritis, Sjogren’s Syndrome, and Lupus the three overlapping circles. UCTD is at the center, meaning people with UCTD have symptoms from all three of these awful diseases.

It’s the best of both worlds.

The “undifferentiated” part means that the patient is presenting symptoms from all three diseases and their blood work doesn’t point clearly to any one disease. My symptoms and labs lean more toward Lupus. I have:

  • joint pain and stiffness
  • fatigue
  • dry eyes and mouth
  • hair loss
  • numbness and tingling
  • anti-double-stranded DNA (anti-dsDNA)
  • positive antinuclear antibody (ANA)

Sometimes I have bladder and GI issues, but it’s unclear whether they’re related.

People with UCTD sometimes go on to fully develop one (or more) of these diseases. Sometimes UCTD just stays put. It can also go away entirely. My rheumatologist is monitoring me for kidney involvement, which is how we’ll know if my UCTD is developing into Lupus.

In all likelihood, my UCTD is here to stay; I’ve had it for over a decade now and it only seems to be getting worse, not better. Since my labs have been stable, though, it’s also likely that I won’t develop Lupus.

This doesn’t mean that UCTD is at all mild. Though it doesn’t involve organ damage, the joint pain and other symptoms can be debilitating. When I’m flaring, I’m mostly homebound, or even bedridden.

To treat my disease, I take 200 mg of Plaquenil and 500 mg of Naprosyn twice a day. I also take Tramadol as needed. My rheumatologist is trying to avoid putting me back on Prednisone because its long-term side effects are pretty nasty, and I was just on it for nine months. Unfortunately, I’ve been flaring since I stopped Prednisone completely. If the Naprosyn doesn’t help my joint pain and stiffness, we’ll try something else.

It’s also important for me to eat right, get plenty of sleep, manage stress, and exercise as much as possible.

Even though having UCTD has been quite the adjustment, I’m learning to live around it. I listen to my body, resting when I need to and being careful not to overdo it. I’m also lucky to have Mike, who cares for me so tenderly and makes me laugh even in the worst of it.