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.
Imagine getting sick, and never getting better. That’s the reality of millions of people all over the world who suffer from Myalgic Encephalomyelitis, AKA Chronic Fatigue Syndrome. Like my UCTD, it’s an autoimmune disease, but with some key differences. Still, I can relate to a lot of the things filmmaker Jennifer Brea deals with.
When Jennifer asked if I’d like a screener of Unrest, I was thrilled. Not only was this a chance for me to learn more about ME, but it was also another opportunity for me to advocate for people like us—people living with invisible illnesses.
Unrest is too relatable. I nodded throughout the entire documentary, and cried quite a bit too. Like me, Jennifer went through a long period of going undiagnosed and untreated because her doctors didn’t believe her. Like me, Jennifer wonders if she’s bringing anything to the table in her marriage. And like me, Jennifer lives for the moments when she can push herself, even if she knows she’ll pay for it dearly.
While Unrest taught me a lot about ME, immunology, and the daily lives of people living with ME, it also made me fully appreciate that Jennifer filmed the entire documentary from her bed. That alone is impressive, but I’m also in awe of how much information she gathered. Let’s face it: it’s hard to get data on autoimmune diseases. Jennifer did it, though.
No one knows disease like a patient.
The only thing I disliked about Unrest is how much it reminded me of my own situation; I hate that there are so many of us living with these debilitating diseases, yet modern medicine is barely beginning to understand how to help us. I see this as a good thing, though, because it’s my hope that able-bodied people will watch this documentary and gain a bit of an understanding of what people like us go through. Maybe it’ll make people uncomfortable enough that they won’t make assumptions about ME and other invisible illness patients.
Despite depicting the pain of living with ME, Unrest ends on a promising note.
Patients living with diseases like ME might be bedridden, but when we gather our collective energy, we can accomplish great things. It’s through our yearning for better lives and the support of dedicated physicians that we’ll continue to make advances.
Unrest is available for digital download (you can buy your copy here). It’s also available for streaming on Netflix starting January 15th.
Disclaimer:I was provided a screener of Unrest in exchange for an honest review. All thoughts expressed in this post are my own. I’ve also included affiliate links, which allow me to receive a small percentage of your purchase.
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!
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.
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?
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.
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.
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
dry eyes and mouth
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.
Chronic illness costs more than you’d think. Financially speaking, it’s the thousands of dollars spent on doctor’s appointments and medications. It’s the medicines, salves, and mobility aids not covered by insurance. It’s takeout in place of a home-cooked meal. It’s time lost at work due to sleepless nights and bone deep fatigue. It’s whole careers and goals, and starting over with new dreams and hopes.
There’s also an emotional toll.
It’s the frustration of finding the right treatment and the side effects of medications. It’s the devastation of years of pain. It’s evenings crying at the sink because it hurts to wash dishes when wrists bend to scrub. It’s the sharp inhalation of breath every time you bend over because knees won’t bend and hips shift as if on broken glass. It’s feeling exhausted after taking a shower, or skipping one because it’d only wipe you out completely.
Then there’s the pain of friends and family who don’t get it. It’s comments like “You’re not using your cane! You must be all better!” It’s dismissive belittling: “That’s not too heavy,” “You just need to walk more.” It’s the feigned interest, the change of subject.
The most substantial cost, though, comes when those close to you—the people you thought understood—actually don’t. It’s the priciest lesson, the deepest cut.
It’s a common occurrence for people with chronic illnesses. It happens to us all the time. We’re treated as an inconvenience—or worse, we’re treated as if we’re purposely inconveniencing someone else.
As if we have control over our illnesses or the weather.
Chronic illness teaches you who’s real and who isn’t, who truly belongs in your life. People like my mom and sister, who stopped by when I couldn’t go apple picking a few weeks ago and brought me apple cider donuts. They drank tea with me and turned an otherwise miserable and lonely afternoon into a nice memory.
All people like me need is a bit of understanding. We don’t enjoy canceling plans. It’s not fun being stuck home under an electric blanket and painkillers. I’d much rather be able to get out and live, but my body often has other plans. Slowly I’m learning to live around it, but it’s even harder to live around a broken heart.
It’s an established fact that I don’t get along with medication that affects my brain chemistry. Zoloft? Neurontin? Abilify? Nope, nope, nope—all poison to my sensitive system. I’ve learned that the hard way. For the past year and a half, I’ve avoided them completely—except for Tramadol, my main weapon for treating my UCTD. I often forget that Tramadol affects your serotonin levels, though.
After I had the flu, I stopped taking Tramadol. The Plaquenil and Prednisone were doing their job, and my pain was down to a 3 or 4 out of 10. I figured I’d be better off coming off the Tramadol. Less is more, after all. Besides, my doctor’s office has been acting weird and it looks like they want me off it anyway.
I thought nothing of stopping it. After all, I’ve taken it on and off for years and I’ve never had any problems. At first, I didn’t notice anything odd. I still had residual fatigue from the stupid flu, and things have been crazy so I thought my anxiety was just life being life-y. Then I woke up one morning feeling awful—unable to focus, out of my skin anxious, heavily depressed, completely unmotivated, and exhausted.
I tried to push through it, but the feeling didn’t lift. I felt physically and mentally weighed down, and again confined myself to the couch, bingewatching Grey’s Anatomy rather than working. At first I tried to tell myself it was still just leftover flu, but it felt more chemical, like when I came off Wellbutrin and Abilify back in 2015. I also had stomach pains that made me double over, and alternating constipation and diarrhea.
Plaquenil gives me diarrhea if I take it too soon after eating and it’s made my brain fog worse from the very beginning, so I started wondering if this was just a new development. I Googled Plaquenil and depression, and found lots of forums full of people discussing the possibility of depression as a side effect. If it’s on the internet, it must be true, so of course I panicked.
I am positive that Plaquenil is causing my depression.
I called my rheumatologist’s office to confirm and see what he wanted me to do. His assistant called me back and told me that Plaquenil doesn’t usually cause depression, but that I could stop it and see if anything changed. (She also said it could be my Fibromyalgia, which confused me because I don’t have Fibromyalgia. Apparently it’s in my chart, along with the UCTD, which really pisses me off because I have zero Fibro symptoms and it’s been decided several times, by several doctors, that I don’t fit the bill for Fibro. Every single time doctors don’t know what’s going on with me, they just blame it on Fibro. This erases me, it erases actual Fibro patients, and you know what? Don’t get me started because this is a whole other blog post.)
I didn’t really want to stop Plaquenil because at this point it’s doing most of the heavy lifting (I started tapering off Prednisone in February). Like I said to my rheumatologist’s assistant, I don’t want to end up bedridden again. She said she understood, suggested that I stop it for a couple weeks and see, then let me go. I really didn’t want to stop it, though, and I think in the back of my mind I knew I was missing something. I took my regular doses that day.
That evening, I moved and my bad hip cracked, kicking off some fun pain. I took 50mg of Tramadol and, a little while later, my pain was less intense and I also felt fine mentally. Then it dawned on me.
I’m supposed to take 50mg of Tramadol twice a day, along with my twice daily Plaquenil. But I’d stopped taking it because the Plaquenil was doing so well for me. My symptoms weren’t Plaquenil side effects—they were Tramadol withdrawal symptoms.
I’ve been on a regular dose of Tramadol for a long time now. Before that, I was being stubborn and only taking it when the pain got unbearable—but that wasn’t working well because Tramadol works better when you’re taking it regularly. In the past, I didn’t have trouble any time I stopped taking it because I hadn’t been taking regular doses. Now, though, my body is used to its twice daily dose, and stopping it suddenly—especially because of the sudden drop in serotonin—threw me way off.
I want to strongly state here that I still think painkillers are a safe treatment option for chronic pain patients. I still think Tramadol was a good choice for me, because other painkillers are very strong and make me sleepy, so yeah. Despite my mistrust of SSRIs/SNRIs, I’m very grateful for Tramadol because for a long time it made the difference between functioning and not. There were too many days that my pain was so disabling, I couldn’t get out of bed or dress myself, but there were also many days that Tramadol helped me push through the pain to have some kind of quality of life. Until a better chronic pain treatment is developed, I will remain an advocate for opioids and opiates because, when used safely, they are life for people with chronic pain.
However, I have very complicated feelings about medications that affect my brain chemistry, and I kind of have the heebie-jeebies knowing that I need help in getting off a medication that basically saved my life. I’d also kind of like to know that, should I need pain medicine again, I won’t have to jump through hoops. I don’t deserve to be chained to my bed because my local and federal government would rather slam down on doctors and patients instead of helping treat patients with substance abuse disorders. I don’t think it’s fair or effective to demonize painkillers, vilify people struggling with substance abuse, and erase chronic pain patients.
But that’s also a whole other post.
I didn’t get the chance to call my doctor’s office yesterday, and my entire state is shut down today because of the blizzard, so for now I’m just going to keep taking the proper dose of Tramadol without trying to come off it by myself.
This has been another episode of I Just Can’t Win Lately, brought to you by My System is Stupid Sensitive.