My Autoimmune Disease is Getting on My Nerves… Literally

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I had a nerve conduction test with my new neurologist yesterday. The test was to see if the numbness, burning, and tingling in my hands is because of carpal tunnel. I was referred by my old rheumatologist.

I liked Dr. Z instantly. She is straight to the point, but really nice. Mike’s been seeing her, so I was already familiar with her and right at ease. Still, I was a bit nervous. Since my old rheumatologist referred me back in April, my symptoms have progressed.

  • the tip of my right index finger has a constant burning sensation
  • the area beneath my thumb on my left palm goes into spasms
  • my feet now get burning and tingling sensations

I had a feeling I wasn’t dealing with carpal tunnel.

During the test, Dr. Z and I chatted about my symptoms, my autoimmune disease, and which doctors I’ve seen. Even though she can seem brisk because she gets right down to things, I found her very warm and personable.

When the test was over, she explained how it worked. Basically, the computer measures how long it takes the electric stimulation to get from Point A to Point B. She showed me the normal ranges and where mine are: normal.

The good news is, she said I don’t have carpal tunnel.

The bad news is, she said it’s likely my autoimmune disease attacking my nerves.

In further good news, Dr. Z said there’s no nerve damage yet. She only tested my hands, and told me that if I’m still having the sensations in my feet in four weeks, to come back. (Since it’s a new symptom, she prefers to wait another month before testing.)

Next week I see my new rheumatologist. I really hope she can put these puzzle pieces together; neither bladder inflammation nor nervous system problems are really a UCTD thing. They’re more of a Lupus thing, and since Dr. S had said my UCTD could be pre-Lupus, I’m a little concerned.

Now that my joint pain is under control and I’m not bedridden or dependent on Mike to help me get dressed, I’d really like to address these other symptoms. I just hope that my new rheumatologist is willing to figure this out with me.

Autoimmune Diseases Suck

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One of the things that suck the most about living with an autoimmune disease is the unexplainable symptoms that put your body under siege. Like, for example, feeling like you have a UTI—when you don’t.

It starts out of nowhere. You feel a burning sensation in your bladder. It also feels like you really need to pee. When you go, though, you only urinate a teeny tiny bit. The burning only eases a little.

It happens again and again, so you figure you must have a UTI. You make an appointment with your doctor. They run a urine culture… and it comes back negative. No infection. There’s nothing wrong with you.

But it keeps happening.

Regularly.

And every time, there’s no infection.

None of my doctors have ever been able to explain this to me. I’ve just learned to live with it. I had a tiny flare a few weeks ago, and a few weeks before that. Last night, though, I had a major flare.

For hours, I was miserable. I desperately looked it up, trying to find some kind of remedy. (When you have a UTI, you can get antibiotics from your doctor. So what do you do when you feel like you have a UTI but you don’t?) I found information about interstitial cystitis and Lupus cystitis, both of which have symptoms like what I experience.

“Cystitis” means inflammation in the bladder. Usually it’s caused by bacteria, in which case it’s a UTI.

Because I have UCTD that could be pre-Lupus, I try to note any changes in my “normal.” A few years ago, when I had another bad flare of this weird non-UTI, my doctor at the time found blood and protein in my urine. No one was ever able to explain why to me.

I suspect it’s yet another piece of the puzzle—a puzzle that’s slowly taken shape over the last decade.

I see my new rheumatologist next Thursday. Who knows? Maybe her fresh eyes will help make sense of all this.

In the meantime, I read on Mayo Clinic that taking NSAIDs and an antihistamine could help ease cystitis. It worked like a charm; I still feel dull burning, but it’s way more comfortable than it was.

Autoimmune diseases are so fun. 🙄

A Sudden Goodbye

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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.

It’s true.

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’m crushed.

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.

Summer Flare Makes Me Feel Fine

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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.

via GIPHY

Still, a few good things happened yesterday:

  • The healthcare bill vote has been delayed because the GOP didn’t have enough support. It’s not dead and bloated, but we blocked that son of a bitch. And we’ll keep blocking it.
  • I crossed 20,000 words for my WIP.
  • 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.

5 Comfort Movies for When You Need R&R

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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.

Phenomenon

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!

Setting Up a Spoonie Couch Office

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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.

Wrist Braces

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!)

Lap Desk

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.

Pain Management

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.

Step by Little Step

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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.

Felt like a selfie, so. #disabledandcute

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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.

Slowly but surely I’m getting my life back.


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