Yesterday my father-in-law told Mike that he got a letter saying that our rheumatologist was leaving the practice. I didn’t want it to be true, but I didn’t think my FIL was mistaken. So I called Dr. S’s office.
They couldn’t give me any information. The receptionist I spoke to said she honestly didn’t know. All the staff had been told was that it was personal. It was sudden. I asked about my appointment later this month, and she told me he was already gone.
I’ll be seeing one of the other rheumatologists that day instead.
I don’t know how to feel or what to expect from Dr. C. I don’t know if she’ll stick to Dr. S’s treatment plan. If she’ll change my diagnosis. If she’ll even take me seriously. Every time I see a new doctor, I have to start from zero. I have to convince them that, even though my labs are vague, I am legitimately sick.
Every single time.
This couldn’t come at a worse time. I’m dealing with new symptoms, that I thought were carpal tunnel but are now affecting my feet as well as my hands and wrists. There’s a chance that it could be my UCTD developing into Lupus. I need my rheumatologist, who has taken me seriously and worked very closely with me. Not a doctor I’m being shuffled off onto, who now has an even heavier load of patients.
I want to be optimistic. I really do. But it’s hard.
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.
When I’m having a bad pain day, dealing with bone-deep fatigue, or just need to feel safe, I look for a calming movie to watch. They’re the kind of movies that you can nap to, if you wanted to. No alarming soundtrack music swells out of nowhere. Though there is conflict, it’s light enough that it doesn’t stress you out.
Usually I look for children’s and family movies—something immersive and soothing. Romances and dramas are good, too. I look at the movie art and description. If the colors are soft or pastel, it’ll be calming—something I can nap to. If they’re bright, chances are it will be a relaxing experience that I can almost fall into.
When I can’t find something new, I have a few go to movies from my childhood.
On his birthday, a man is struck by a strange light and develops extraordinary abilities.
Though there are a few exciting moments, you can easily lie down and relax. Just a heads up: though Phenomenon is a bit tragic, it ends on a happy note.
The Dark Crystal
The last two Gelflings embark on a quest to repair the Dark Crystal and save the world.
I remember watching this on rainy days as a small child. The Skeksis scared the crap out of me back then, but since it’s become a staple. It’s a colorful movie set in a fantasy world, and few things are more calming to me.
Homeward Bound: The Incredible Journey
A trio of pets get separated from their humans and decide to find their own way home.
I may or may not have watched this 1,900 times as a kid. Shadow, Chance, and Sassy made me desperately want a pet, and Sassy made me fall in love with cats. “No, dummy dummy dummy.” 😂 I think there are two moments in this entire movie where your heart rate kicks up, and everything turns out all right in the end anyway.
The Secret Garden
When an orphaned girl comes to stay with her uncle in his manor, she discovers a secret garden—and the key to restoring her family.
Here’s another movie from my childhood. Are you noticing a pattern? Though there are some sad undertones, The Secret Garden is visually stunning with all of its beautiful landscapes, and there are few loud moments.
A Little Princess
A young girl becomes a servant at her boarding school when her father goes missing.
Another movie based on a Frances Hodgson-Burnett book, and also one of my all-time favorites from childhood. Sarah’s stories alone are super soothing. I wish someone had the foresight to hire that kid to record audiobooks. Even though there are a couple sad moments, this is another movie that has a happy ending.
Each of these has a bit of a fantasy element to it, most of them are children’s movies, and all of them were filmed in the ’80s and ’90s but have an evergreen feel. There’s no distinct decade music (though the score from The Dark Crystal is admittedly pretty ’80s).
Unfortunately none of these are on Netflix or Amazon Prime at the moment, but they’re worth renting or owning.
What are your favorite movies for R&R? Let me know in the comments!
I’ve been in reactive mode for as long as I can remember; things keep happening, and I do things in response. For years I’ve felt like I’ve only just been keeping my head above water. Now, I know shit happens in life and I can’t necessarily control everything, but I’d really like to break out of that cycle.
Yesterday Sandy and I were looking for a laugh and searched for “how to adult” videos on YouTube, when we came across this.
What I thought was going to be funny ended up really opening my eyes. I don’t think I’ve been victimizing myself, per se, but considering all the trauma I’ve been through, it’s really easy to fall into a trap where I feel like bad things just keep happening to me.
It’s time for good things.
I keep seeing all of these indie authors making it and thinking things like “When is it going to be my turn?” and “What am I doing wrong?” I see friends buying houses and going on vacations, and I wonder if those things will ever happen for me. It’s not my fault that I got sick or that my pain is so debilitating I can’t hold down a “normal” job, but there are things I can control.
In December I got a new phone and one of its features is a bedtime and wakeup time. It’s been a game changer for me. All I had to do was tell it how many hours of sleep I wanted per night, then fiddled around a bit with a dial until I found times that I could live with. Since then, I’ve been going to bed around 11 p.m. and waking up at 8 a.m. almost religiously. I say “almost” because I have it set for weekdays and let myself stay up and sleep in a bit later on weekends. Aside from a few exceptions—painsomnia, events, Stardew Valley or Netflix rabbit holes—I’ve been sticking to this for months. And you know what?
I’ve been much more productive. I sleep better. I have more energy. I’m in a better mood.
I still have pain, I still have fatigue, I’m still sick, but combined with my new meds, I’m in a much better place. And all I did was change one small thing.
Kalyn’s video got me thinking: What if I took things a step further? Rather than stumbling upon and playing with an iPhone feature, I can make some conscious tweaks and improve my life even more. I sat down and thought about the kind of life I want, and I came up with this list:
I want to be the kind of person who will write every day.
I want to be the kind of person who is able to comfortably pay my bills and buy necessities.
I want to be the kind of person who has my own car.
I want to be the kind of person who can buy a house.
I want to be the kind of person who will regularly treat myself to a manicure and pedicure.
This week I wrote every day. I didn’t set a daily word count goal (though I do like to write at least 1K words). I was just happy with myself as long as I wrote. Usually, even if I didn’t feel up to it, the words started flowing after I pecked away at the keyboard for a bit. It didn’t hurt that I’m really enjoying writing Any Other Love. Even though I’d like to write much more, much faster, I’m still making progress. I’m making my way to 25K, then 30K, then 40K… all the way to my projected 70K.
I don’t work on weekends, so I don’t usually write then (but sometimes if I’m really fiending, I “sneak” in some writing). Saturdays and Sundays are mine to do with as I please. Netflix and chilling on my couch in the old fashioned sense of the word? Yep. Playing an obscene amount of Stardew Valley? Yes. Spending time with friends and family? Oh yeah.
Those are two more simple rules that I follow, and it works.
I’m still figuring out a plan for the other things—after all, one doesn’t simply buy a house out of thin air—but they feel achievable using these principles.
What kind of person do you want to be? Let me know in the comments!
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.
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!)
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.
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.
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.
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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.
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.
Today marks 10 years since I got sick and didn’t get better. I have a lot of complicated feelings about the whole thing. 10 years ago today I felt a weird tingling and numb sensation radiating from my wrist to my elbow, and shortly after that it turned into joint pain. In the years that followed, each of my joints systematically became affected until I was completely disabled.
It’s been a long, exhausting journey—physically, mentally, and emotionally. I’ve been on Plaquenil and Prednisone for three months now. My disease is now under control; before I came down with the flu, I walked a whole mile—and didn’t pay for it. I walked a little over a quarter of a mile today. My plan was to walk the full mile over to Sandy’s, but she got sneaky and intercepted me. Still, it felt really good to walk—even though my anxiety was being an asshole and I was honest to goodness convinced that I was going to get hit by a car and die the entire time I was walking. 😂
I have Undifferentiated Connective Tissue Disease. Since being diagnosed in December, I’ve done some reading. My disease could go one of three ways: it could go completely into remission, never to return; it could stay UCTD, which would be manageable with my current treatment plan; it could become Lupus, a whole new ball game. Funny enough, I don’t worry so much about it being pre-Lupus anymore or sticking around, because Plaquenil has changed my life and as long as I can keep my health insurance, I’ll be okay. I do worry about losing my health insurance, though, because there’s no way I could afford these medications out of pocket, and no health insurance company would cover me under the Republican’s proposed replacement for the ACA. Without the ACA, I will be disabled again. Period.
Right now, though, I’m extremely grateful for my rheumatologist and the treatment plan he has me on. I’ve had few side effects from Plaquenil, and they’re definitely tolerable compared to debilitating joint pain, fatigue, and my other UCTD symptoms. Illnesses like the flu will trigger flareups, but they fade when I recover. In this moment, I have a happy ending—something I honestly hadn’t dared to hope for.
My plan right now is to keep taking my medication for as long as I can, and fight to keep my health insurance. For me and so many others, the ACA is the difference between life and death; being bedridden and writhing in agony is not living. Lately I’ve been living more than I have in the last 10 years, and I’ll go down swinging to keep it that way.
It’s been a full week since I last posted here, which is weird for me because I’m usually a font of word vomit. I managed to come down with another flu virus, though, so I’ve been busy napping. This bout was particularly nasty and, from what I understand, it’s been going around. I didn’t even bother to get swabbed, because the second my eyeballs started hurting and my temp started climbing, I knew.
Still, it’s been rough. For several days, I had muscle, joint, and skin pain. Yes, skin pain. It’s a thing I sometimes experience with my Undifferentiated Connective Tissue Disease, but it’s never a big deal. This? Was hell. I couldn’t move, because every inch of my upper body felt like it’d been badly sunburned. Showering and toweling off after? Hell, I tell you. The muscle and joint pain were nasty, too. On its own, the joint pain would’ve been a 6/10 and the muscle pain a 4/10, but the three together were damned near unbearable.
I decided not to call my doctor because A) Tamiflu only shortens the flu by like two days and B) I kind of currently don’t have a primary care doctor. My doctor’s office has been blowing me off ever since I sent in my letter of complaint, and I honestly didn’t have the energy to talk to them about my concerns and explain my symptoms—especially since they don’t listen in the first place.
I just toughed it out, and I’m still recovering. At this point I just have a runny nose and dry cough, and I’m still easily fatigued. I do feel better, though, so I really can’t complain. However, I’ve also come down with a touch of stupid depression.
Granted, I think anyone in my shoes would feel this way. I’ve been through a lot lately, and things pretty much suck in my country right now. For the past several weeks—months, even—I’ve been in survival mode, reacting as I need to and staying on my feet. It’s not at all surprising that I got the damned flu again. In emergencies, I’m always the one to panic after it’s all over. Today I burst into tears and had to remind myself that Mike is okay, I’m okay, everyone’s okay, we got through it all, we’ll get through everything else.
I guess I just haven’t had the time to process everything.
So while I’m recovering from the stupid flu, I’m also working on processing the past few weeks and the things that I know are to come. I’m also working on easing up on myself; I put a lot of pressure on myself, and tonight I realized it’s time to let it go. Writing has been really hard for me lately. I had a lot of plans for 2017 and the only one dictating what I “need” to do was, well, me. I’m working on clearing my plate a bit and giving myself room to recover, as well as room to just be, and then room to grow.
I’m also working on my author website this week, so if it goes down for a while, don’t worry. I’m not going anywhere.
Sometimes, you just need to pause and practice breathing—and that’s exactly what I’m doing.
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. ♥