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.
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.
I’ve been flaring for just about two weeks now. Yesterday was particularly bad. I ended up calling it a day early and resting on the couch.
I think it has to do with the weather; the temps here have been in the low 70s, getting pretty chilly some nights. It’s been pretty miserable. After so many days of pain, I become convinced that I’ve never had pain-free days and never will again. Pain is smothering like that.
I got some potentially good news about a family member.
That’s how I’ve been getting through this flare. Focusing on the good. That and Advil twice a day, Tramadol at night. I haven’t really been sleeping, either, but last night I finally slept decently. Sheer exhaustion? Maybe. But I’d like to think that since my mind was eased a bit, I could burrow through the pain and rest.
I hate summer flares. They don’t happen often. My last was a couple years ago. I really didn’t expect one this summer, since Plaquenil has been working so well for me. Hopefully it’s just a weather thing—maybe we’ll just need to adjust my meds. I see my primary this week and my rheumatologist at the end of the month, so we’ll see.
If I’ve gotten nothing else out of this whole autoimmune disease gig, it’s that living with one is fucking weird. I have Undifferentiated Connective Tissue Disease (UCTD). Basically, my immune system is confused and is attacking my connective tissues: joints, skin, tendons, etc. My UCTD could be pre-Lupus, pre-RA, or something else entirely. Right now my rheumatologist is treating it as UCTD with Prednisone and Plaquenil.
Many autoimmune diseases are completely invisible. On the outside, I might not look sick—especially on a good day. With makeup, I can mask the fatigue under my eyes. Unless I’m wearing my wrist braces or using my cane, you might not even notice that I’m in pain. I’ve gotten really good at hiding my discomfort (unless it hits that 8/10 level that I just can’t tolerate).
Then there are the completely weird-ass symptoms. My main symptoms are joint pain and fatigue, both of which can be debilitating. Thankfully, my new medications have stopped my current flareup. However, I’ve got the flu again, which has aggravated another symptom which is usually no big deal.
You know how when you’ve got really bad sunburn or a burned yourself while cooking? Or, for those of us with tattoos, that feeling after several layers of color? It’s a raw pain on your skin that is aggravated when you touch it or when something—like your clothing—brushes up against it. I get patches of skin that feel burnt, but nothing is there and I haven’t hurt myself or been out in the sun.
Usually, these “patches” are no big deal; they go away in a couple of hours or a day at the most. They’re often super small areas, too, so it’s easy to avoid irritating them and ignore them. With this flu, though, most of my body feels this way. The flu and illnesses in general tend to aggravate my UCTD, but this is completely new to me. Usually it’s the joint pain that gets out of control. I also find it kind of odd that the Plaquenil isn’t suppressing this.
It’s weird symptoms like this that keep autoimmune patients on our toes.
As if that’s not all bad enough, most of the time our doctors don’t even know what to do with us. I’ve had physicians suggest I see a psychiatrist, ask me what I want them to do for me, flat out tell me there’s nothing they can do… The list goes on. When you have cancer, you see an oncologist; there’s no such thing as an autoimmune disease specialist, which is a damned shame, because there are a lot of us and very few physicians who can effectively diagnose and treat us.
Thankfully, I wound up with Dr. S, who’s been amazing. If he ever leaves the practice, I’m going with him—even if I have to follow him to the North Pole. It’s that hard to find a good doctor who can roll with the punches of an autoimmune disease; doctors don’t like medical mysteries, because they’re not cut and dry. Hell, I don’t like them either.
Autoimmune diseases are just plain weird, and living with them is weird. Still, I keep on trucking, because I’m too stubborn to lie down and quit. I’m not too stubborn, though, to lie down and rest once in a while.
Do you have a rare disease? What are some weird things about it? Let’s commiserate in the comments below. ♥
I had so many plans and hopes for this new year—so many things I wanted to do. Yet these past couple weeks, I’ve been mostly immobilized.
I’ve been bedridden before. I’ve spent entire winters doped up on painkillers, binge-watching whatever from the relative comfort of my bed. But this winter was supposed to be different. I’d started Plaquenil and Prednisone, and they were helping. Then they weren’t—or at least, not as much.
It started off slowly. The joints in my neck and lower back hurt, but the pain was tolerable. As a whole, I was feeling better; I could actually use my hands again. Then the joint in my neck swelled to two or three times its normal size, and my back joined the screaming chorus.
At first, I thought it was my new pillows. I’d bought a couple king-size pillows and they’re super thick. I figured I’d tweaked my neck while trying to sleep on them. I bought a less thick pillow and the pain immediately improved. Until it got worse again.
So then I thought it might be my work setup. For the past few months, I’ve been working from my couch. Not the most ergonomic setup—especially since I tend to lean into my computer when I really get into whatever it is I’m working on. I became more mindful of my body while working, keeping my neck and back more straight while on the couch. Mike joked that we should duct-tape my head to the couch to keep me from leaning forward and putting strain on that joint.
I also cleaned up my office a bit and returned to working at my desk. It’d become a bit of a dumping ground these past few months—getting more and more cluttered as I felt worse and worse. Even still, with a proper desk and chair, I can’t sit at the computer for very long. If I’m lucky, I’ll make it 40 minutes.
The only time my neck and back aren’t screaming is if I’m reclined on the couch with full blast heat on them—or flat on the floor on my yoga mat. Alternating heat and ice was helping, but the other day I iced my neck for no more than 20 minutes and it made it worse. A lot worse.
Last Thursday, I saw the APRN at my GP’s office. I had to go in for a refill anyway, and figured I’d have her look at my neck—which was my biggest concern, considering the joint is so swollen. I told her what I’d been doing: TENs machine, Advil, rest, ice, heat, Tramadol (as well as my Plaquenil and Prednisone). She said the joint was definitely swollen. I explained that the Advil was helping a little, taking it down by a notch, and told her I’d been taking two Advil three times a day. I asked her if I could take more and, if so, how much would be safe to take in a given day.
“Don’t take too much, or it’ll cause an ulcer.”
“Oh, of course! But how much can I safely take?”
“Just don’t take too much.”
I wondered whether I’d accidentally walked into an episode of Punk’d. “Okay, well, is there anything else I can do? It’s really painful.”
“The Prednisone should help it.”
“Well… I’ve been on it for a month, and this is a new problem.”
She mentioned Prednisone again, completely brushing me off.
It wouldn’t have been such a big deal, if my husband hadn’t recently been in to see her about his swollen knee. She prescribed him a relatively new NSAID: ibuprofen 800, which also has an antacid in it to lower the risk of ulcers. I don’t think she does it on purpose, but she doesn’t listen to me. There’s definitely a gender bias when it comes to patients, and until now I’d never really dealt with it so blatantly. When she sees Mike, she’s on her game, helping him with all of her expertise. When she sees me, she either laughs me off or ignores me completely.
That’s not even what I’m really angry about, though.
Every day, I fall further and further behind on my production schedule. I try to do simple things around the house—like cleaning my bathroom—and I pay for it for days. For a brief window, I got a glimpse of what it’d be like to live with low pain. (On one particular Sunday, it went down to a 5/10!) I started to feel hopeful that I’d get my life back. I know there’s no cure, that I’ll never be pain-free again, but every time I turn around, I feel like I’m losing yet one more thing.
I haven’t worked a normal job in years.
I haven’t been able to write in months.
I’m just really tired of this disease taking from me, and I still don’t even really know its damned name.
And, if I’m being really honest, I’m a little scared.
My pain has changed; now when any of my joints creak, there’s pain where there wasn’t before, and the pain in my neck and lower back is a burning pain that creeps up and down my spine like fire. Every time my disease changes, we find another piece to the puzzle. My doctors have said so many times that something autoimmune is definitely brewing, and I’ve joked that if this is “just” brewing, I don’t wanna know what full force feels like.
So I wonder: Is this full force? Am I about to get the answers I’ve been wanting? And, if so, will I like those answers?
I have a really hard time asking for help, but I’ve got electricity/heat, student loans, and other bills creeping up on me. If you’d like to help, you can buy my books, throw me a tip on PayPal, or donate to my GoFundMe. If you can’t help financially, a comment offering virtual hugs would really lift my spirits. I appreciate your support, in whatever form. 💜
And by “bitches,” I mean “dear friends who help me with things.”
This weekend, I finally upgraded my pathetically outdated iPhone 4. Not even the 4S—the 4, you guys. It was years old and turtle slow. It did make calls, which is pretty much the point of a phone, but in my out-in-the-country apartment, I barely have service. Texting is my main method of communication—that and FaceTime. I’ve long been eligible for an upgrade, but money’s been tighter than tight. Sprint.com had a deal: a free iPhone 5S with a two-year contract renewal. Um, hello!
I’d been using Siri on the iPad, which we got secondhand in December 2015—and it radically changed my life. When it’s plugged in, you can use the “Hey Siri” feature, which is pretty handy. For example, if I’m cooking dinner and the iPad is on the counter playing a podcast, I can plunk my sore body down and say, “Hey Siri… Set a timer for 20 minutes.” Hands-free, which my achy fingers and wrists really appreciate. I don’t have to walk across the kitchen to reach the iPad, which my hip and lower back also appreciate.
Since activating my new phone, I’ve used Siri mostly for texting. I’ve been having a hard time with texting lately, because my thumbs and wrists are so stiff and sore. The simplest messages take me forever, and it’s almost guaranteed that I’ll goof them up somehow. It’s really amazing to hit that button and say “Read my texts” or “Text so-and-so…”
While the tech itself is cool and I nerd out a lot about it, I’m all about the accessibility. If Siri has been helpful to me, imagine how helpful it is for others!
I would’ve been completely satisfied with my Siri, but my aunt got us an Echo Dot for Christmas. Now my little gang is complete with Siri and Alexa.
At first, back when Alexa first launched, I thought it was a tad bit creepy that Alexa is always listening. You don’t press any buttons. You just say “Alexa,” and then whatever command. It was also kind of buggy when it first launched; it didn’t understand a lot of things and often played the wrong songs, etc. But Amazon seems to have ironed out some serious kinks. However, Alexa doesn’t seem to understand my husband. Maybe it’s because he spent its first night home completely torturing it: “Alexa, what drugs do you do?” Now Alexa ignores him completely. (I can’t really say I blame it.)
In the morning, I’m supposed to take my Plaquenil, Prednisone, and one of my two Tramadol for the day with some food. I’ve been having trouble with Plaquenil and dairy, though, so if I have any dairy in my breakfast, I wait before taking my meds. Being that I’m so stiff in the morning and my mobility isn’t the greatest until Prednisone kicks in, I’ve already settled into a rhythm with Alexa. When I finish eating, I say “Alexa, set a timer for 20 minutes.” It can hear me from across the room and starts the timer right away. I can even ask it, “Alexa, how much time is left on my timer?” I don’t have to get up or push any buttons. For me, this is a dream. When the timer goes off, I say “Alexa, stop,” and take my meds with water.
I’m sure I’ll find more uses for Alexa and Siri. I’m trying to figure out how I can have Alexa read my manuscripts to me while I’m editing; it can read Kindle books, but I don’t know if I’d have to format my WIP as a .mobi first or if it’d work just fine if I just load it into my account as a .doc. This would help me catch more errors in early passes.
Siri can also take dictation; I’m planning on setting aside some time to play around with writing by dictating to Siri on my Mac. I know a lot of authors love Dragon, but I just don’t have the budget for it. Dictating my novels—if I can get the hang of writing out loud—would really take some strain off my wrists.
I know a lot of people are kind of weirded out by voice-commanded tech. It seems futuristic and slightly creepy. My dad, for example, wants nothing to do with it. I completely agree that there are certain lines you just don’t cross. I wouldn’t load all of my payment and banking information into Apple Wallet, for example. That’s just asking for trouble—or at least, it seems that way to me. But Alexa can order things off Amazon for you, and you can even set a voice code so that it can’t be abused. I don’t often feel well enough to run errands, and Mike is usually exhausted and raring for a nap after work, so it would be pretty handy to say “Alexa, order some paper towels” or whatever when we’re running low. They’d be delivered straight to my door, saving both of us some time.
You can even connect certain home objects to your Alexa. It’d be so rad to say “Alexa, turn down the thermostat” or “Alexa, turn on the bedroom light.” I can easily imagine mornings, when it’s hard to get out of bed, made a bit easier by my girls: “Alexa, read Let’s Get Visible.” I could still be productive.
I do feel kind of weird “bossing” Alexa and Siri around. I can’t help but think of The Matrix and even Dollhouse. It brings up some interesting questions. Does AI have feelings? What makes us human? Sometimes I say “please” or just tell them they rock. I can easily imagine a future where voice-commanded AI is super useful or completely and totally abused—or abusing us! It’s definitely an intriguing avenue to explore in fiction. My Amarie in the f/f companion novel to Just One More Minute always says “please” to Alexa and Siri, because she doesn’t want to hurt their feelings. (Amarie is so sweet, and I can’t wait for you to meet her!)
Security and ethics aside, I welcome our robot overlords. As long as you’re smart about how you use them, they can be extremely beneficial to those of us with limited mobility. I’m even envisioning a future where, instead of the Life Alert lanyard, elderly people have an Echo Dot or something similar in their home; if they fall, they can say “Alexa, call 911” or even “Alexa, call my daughter.”
There are so many fantastic uses for Alexa, Siri, and future iterations. I’m eager to see how this technology progresses!
Do Alexa and Siri creep you out? How would you utilize them in your everyday life? Let me know in the comments!