My Autoimmune Disease is Getting on My Nerves… Literally

Photo by Matheus Ferrero on Unsplash

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

Photo by Hailey Kean on Unsplash

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. 🙄

They Don’t Know What to Do with Me

photo-on-11-22-16-at-10-29-pm-2TL;DR: My primary doctor’s office doesn’t know what to do with me. Basically none of my doctors do.


Today I went to see my primary for a followup. In October I was told that I now have to come in every time I need a refill for my Tramadol (opioid painkiller that I’ve been taking for my joint pain for about five years). I also got a bit of a lecture on opioid addiction, which I know they have to do but, yeah. This after I had to jump through hoops to get the refill in the first place.

Anyway, I’d scheduled today’s visit when I got my refill in October, but I also wanted to come in to show them my swollen thumbs. Every time I try to take a picture of them, it doesn’t show up on my crappy iPhone 4 camera, but both of them are swollen at the joint. Late last year, my rheumatologist Dr. Memet said I have enthesitis-related arthritis, which means my tendons are inflamed where they connect to my joints. This explains why my inflammation markers in my labs are always negative. After that, she diagnosed me with Reactive Arthritis, but when she left the practice, my new rheumatologist canned my diagnosis—until my anti-dsDNA came back positive. Right now we’re looking at possible Lupus.

I see Dr. S (my rheumatologist) on December 1st, but in the meantime really wanted my flareup and swollen thumbs on record. (My PCP and rheum are both in the same medical group, so they use the same patient portal.) My appointment was with the APRN at my primary doctor’s office. I went in with a two-page list of concerns, plus pictures of where I have joint pain in my chest. (Fun fact: There are joints everywhere. Everywhere.)

To be fair, the APRN was nice and she listened. But… she admitted she doesn’t want to mess with me because “there’s so much going on.”

I showed her my thumbs and we discussed my other trouble joints. I also asked her about Tramadol. A friend with a slipped disc is in pain management and her specialist explained that Tramadol doesn’t work for pain unless you stay on top of it. Meaning, if you take a dose at the end of the day when the pain is already high, like I do, it ain’t gonna touch it. I’ve long suspected this, so it was nice to actually “hear” a doctor confirm it. I asked my APRN if there was any way I could split up my 100mg dose throughout the day. She instead urged me to go to pain management.

I have… doubts about pain management. For one, I’ve heard a lot of horror stories. And… I don’t want anything stronger than Tramadol pushed on me. I’ve tried Percocet and other things and, yeah, they worked really well for the pain, but they knocked me out or made me super loopy. Either way, I couldn’t function. I like functioning. I have writing to do.

Another concern I have is that very few pain management clinics in the state take my (state) insurance. My friend has the same insurance and had a lot of trouble finding a place. She ended up with a clinic an hour away. I can’t swing that because Mike works full-time and we only have the one car. Family members have offered me rides to appointments but honestly I feel bad about asking them to take me that far, especially when pain management wants patients to come in often.

Maybe this sounds like excuses.

Anyway, I expressed all my concerns to my APRN and she said there was one in Southbury. Alas, they don’t take my insurance—but she did find one closer to me than an hour away. Just not as close as Southbury. 😂

Honestly, at this point, I didn’t feel like I had much of a choice. My rheumatologist has suggested pain management before (after grilling me about my Tramadol prescription), and last time I saw the APRN she wasn’t too crazy about me and Tramadol, either. It seems like more and more doctors just don’t want to mess with painkillers. Which is a shame, because when used correctly, they’re extremely beneficial to chronic pain patients. Plus Tramadol is honestly the baby aspirin of the painkiller family. No one is going to pursue it to get high. But I digress.

So, I’m going to pain management. Hold me.

To be fair, my friend had the same fears at first, but she really likes her clinic now. They’ve got her Tramadol dose to a point where it’s helping, and she’ll be having surgery for her neck soon. She’s very happy with the care she’s getting, so hopefully this will be a blessing in disguise.

I also talked to my APRN about my GI symptoms. They’re… pesky. And embarrassing, so I’ve never mentioned them here before. Nor have I discussed them in-depth with my doctors. But I bit the bullet and flat out told her. She said it sounds like IBS, which I’ve been wondering. The kicker is, when I asked what we can do about it, she said she doesn’t want to mess with my body because “there’s so much going on.” And laughed.

I was not amused.

Honestly, I just feel like I’m always being passed on. No one wants to help me. They’re either too busy or don’t have the expertise, so they hand me off. And nothing ever gets taken care of.

This has been going on for almost 10 years.

I had to fight for a cortisone injection in my toe. I eventually got it, but I had to jump through hoops. Cortisone injections are standard procedure for patients with arthritis. My grandmother gets them all the time. I’m pretty sure my dad got a couple in his problem hand (he has tendon issues). But when I walk in, it’s always “You’re too young for all these problems.” Like it’s somehow my fault, or like I’m making it up.

I eventually got the shot, and you know what? It worked like a charm. It wore off, and when I mentioned so to my APRN last time and said I need another one, she said I’m too young and laughed. Like this is all one big cute joke.

Why, today, I couldn’t start Prednisone to fight the inflammation, or at least get cortisone shots in my thumbs, is beyond me. I was flat out told they would only treat my IBS when it’s flaring—even though I said I have symptoms all the time—because they don’t know what to do with me.

They never do.

You Don’t Know Exhausted Until

you-dont-know-%22exhausted%22I never followed up on my last health update (the one where I found out I was once again looking at a Lupus diagnosis). Since that post, I’ve gone into a full-throttle, super nasty flareup.

  • My pain has been steadily at 10/10 (8/10 at the lowest, with medication). I thought I had it under control after breaking up my Tramadol dose. Usually I take 100mg at bedtime, but I started taking 50mg in the morning and another 50mg at lunch instead, using my herbal medicine before bed to get me through the night. I got the idea to split my Tramadol from a friend, whose pain management doctor told her that Tramadol isn’t great for treating pain; you have to take it ahead of the pain—which I’ve long suspected. The downside to all of this Tramadol? TMI alert: I’ve been a little constipated, which I’m pretty sure is making my back pain worse.
  • Joint pain is symmetric, meaning both sides hurt. So both of my thumbs are painful and stiff, both knees, both elbows, etc. Oddly, my right side hurts more than the left in some cases; my right big toe, right hip, and right thumb have consistently been more swollen and painful than the left side. I suspect these joints all have bone spurs (Dr. Memet said she thought my toe did [both in the toe joint itself and the other nearby joints]—, my hip x-rays showed bone spurs, and my thumb feels exactly the same as the other joints do).
  • The pain is a hot ache and it radiates. But it also feels… bruised? There’s almost a throbbing, too; I can feel my joints swelling. It’s really hard to explain. Regardless, it feels fucking horrible.
  • My lower back is equally painful on each side, and very stiff. This morning Mike had to help me get dressed and put my slippers on. He had to help me sit and stand up multiple times. And every time I need to get something from one of our cabinets, he’s had to do it for me (our cabinets are underneath our counter—no overhead ones).
  • The pain wakes me up at night, multiple times. There have been a few nights where I couldn’t get comfortable and so didn’t sleep at all.
  • On top of the pain, I’m drained—no matter how much sleep I get. I’m not usually a napper, but I’ve been caving and taking naps. I’ve also been chugging Emergen-C like it’s my job. Neither that or coffee really help, though, so I’ve mostly been drinking plain water.
  • The only place I’m truly comfortable is on the couch. It curves nicely against my back and reclines, so I can get the pressure off my hips and knees too.
  • I need my cane while out and about—if I’m even up to leaving. I stayed home instead of going to a wedding reception this weekend. Today I basically haven’t moved from the couch, because walking and standing are sucky.

Since my last post, I found out that my anti-dsDNA was positive and pretty freakin’ high. A positive anti-dsDNA means:

  • there’s definitely something autoimmune going on
  • there’s a pretty good chance it’s Lupus
  • the immune system is attacking the DNA
  • the person is currently or about to be in a flareup
  • the higher the levels, the worse the flareup

My rheumatologist’s lab measures anything over a 10 as positive; my anti-dsDNA measured a 24. That’s more than double the normal level.

My rheumatologist said he doesn’t want to diagnose without a positive ANA, but I’ve found several medical journal articles that said doctors don’t need more than a positive anti-dsDNA to diagnose Lupus—especially with presenting symptoms. My rheumatologist said he was calling in Plaquenil, though—or so I thought. When I went to pick it up at my pharmacy, it wasn’t in. I checked the pharmacy several times, and they even checked other locations. No dice.

Honestly I’ve been so exhausted, not to mention tired of the medical merry-go-round, I haven’t called my rheumatologist’s office yet to see what happened with the ‘script. I was on the phone multiple times with them before and after my blood work came back, trying to resolve my bad appointment. I’m just sick of having to do all of this.

I have, however, been reading up on the anti-dsDNA, Lupus, and some other things.

  1. What Arthritis Pain Feels Like—It’s possible that I have both OA and RA (or Lupus). Dr. M told me I have bone spurs in multiple joints. However, some articles indicate that bone spurs can be caused by RA/autoimmune. It really depends on the author, as rheumatologists all have different opinions. Either way, this article describes my pain to a T.
  2. New Findings with Eppstein Barr Virus—I know one thing for sure: this all started after I had mono, which is caused by EBV. I thought this article was interesting, because even though it didn’t mention Lupus, it did mention some findings. For example, researchers believe that a healthy zinc level may keep chronic active EBV disease at bay. I’m wondering if my EBV is slowly evolving into Lupus. If so, could taking some of these supplements help keep flareups away? Or maybe it’s CAEBV? Chronic Fatigue Syndrome? Rheumatoid Arthritis? Lupus? Some combination of multiple or all of these? Can someone please get me some answers before I lose my mind? 😜
  3. Characterization and Treatment of CAEBV Disease—This article made me want to check my EBV levels; if nothing else, it’d be interesting to compare where they are during a flareup to their levels during remission.
  4. Understanding Lab Tests and Results for Lupus—This was the article that suggested rheumatologists only need positive anti-dsDNA and presenting symptoms to make a Lupus diagnosis and begin treatment.

    Anti-DsDNA is more specific to lupus than ANA and can be very valuable in making a diagnosis of lupus. […] If the anti-DsDNA levels are high, the disease is more likely to be active. There is either a current flare or a flare may be imminent.

  5. I’ve long been complaining about Connecticut healthcare. Recently I found another spoonie living in CT who, after years of getting nowhere, went to see a rheumatologist in Boston. Within a single office visit, he diagnosed her and began treatment. I’m starting to think it’s time to get an out-of-state opinion.
  6. She also has a post all about filing for disability, which really gave me hope because I thought after being rejected that there was no way I could get it. I know many people get rejected the first time and have to try again, try again, but I thought since I lost my diagnosis, I definitely didn’t have a chance. But it seems like, as long as you can prove your illness is affecting your ability to work—which it is—you can get disability.

I know I should’ve called both my primary and rheumatologist days ago, because even if they don’t feel like doing anything about it, at least this will be documented. It’s nearly time for a followup visit with my rheumatologist anyway, and I’m scheduled for a followup with my primary for November 17th. (Long story short: My primary wants me to come in every month in order to have my Tramadol refilled.) And my rheumatologist wanted to check my levels again in another month.

I’m out of ink (and can’t afford more right now, sigh); I’d really like to print off these articles as well as a list—my current symptoms, things I’ve tried, goals that I have, etc—and bring them in with me. I’ve started looking for rheumatologists in Boston who take my insurance (spoiler: there aren’t many), and I’m considering picking one and calling to make an appointment. But it’s a three-hour drive there, and we’re barely scraping by—never mind able to afford a trip to Massachusetts and back. I’m really starting to think it’s worth the risk, though.

I also need to get my medical records from Dr. Mongelluzzo (my former primary) and Dr. Greco (my first rheumatologist who retired, which was why I started seeing Dr. M); those records have blood work showing positive anti-dsDNA (and I’m pretty sure a positive ANA, too). I’d like copies for myself, rather than transferring them over. For one, it’s just good to have them. And two, I don’t trust Dr. S to actually read through them (nor do I trust Mongelluzzo’s office to actually fax them over, as I’ve had so many issues with them in the past; they’re very nice but extremely busy). I’d like to make copies of my copies for Dr. S, and highlight things that fit into the puzzle. Basically, I have to be my own detective and advocate.

The problem is, I need to get into Waterbury and sign a release form for each of them (the offices are across the city from each other). This is also a gas money issue. And, I have to pay for copies of my medical records from Dr. Mongelluzzo (I’m not sure about Greco’s office). A friend got copies of hers, and it was something like $2 a page—so I know my records are going to be hefty, since I was there for several years.

So maybe now you can see why I’m so doctor-fatigued. 😂

It’s all got to be done, though, if I’m ever going to get anywhere. I’d really like to start moving forward, because I’ve been in limbo for the past nine years. I mean, I dropped out of the university I was attending for my B.S. in Elementary Education because I was so sick. And I never went back. I’m still paying off those student loans. Even though I really love being an author, it’s not enough. We’re drowning here; I’m frustrated because I can’t work, and Mike is frustrated because his job doesn’t pay enough and he can’t seem to find anything else. It’s kind of funny because we both really want to take care of each other.

He insists that he can handle everything if he finds something better; I insist that, if only I could get better, I could work too and he wouldn’t have to stress it.

I keep hoping that if I work hard enough, write better books, and write enough books, we won’t even have to worry about it anymore. But the reality is, even if I became the best author in the world with the most published books ever, it’s not always possible to make a living. I mean, maybe I’m being cynical and negative, but someone has to be on the low end of the spectrum. Not everyone can be a NYT/USAT bestselling author or even mid-list.

Heavy sigh.

On the plus side, I’ve been pouring all of this frustration into my work in progress (SOF4). Speaking of, I broke 12K last night! *happy couch dance*

I should mention again that I have a GoFundMe page open and, if you’re an author looking for services or just want to help, you can donate and help us catch up on bills. Click here.

Anyway, I think I’ve burbled on enough for now. Thanks for listening. 💜

Elizabeth Barone

Putting My (Inflamed) Foot Down

via Unsplash
via Unsplash

It’s been a busy last few weeks while I’ve been trying to get things rolling again. On top of editing, writing, and marketing, I’ve also been having trouble with my arthritis.

My joint pain is migratory, which means that it can affect any and every joint, often at different times. Sometimes it decides it’s comfy and moves into a particular joint for the long haul. For the last couple of years, I’ve had a lot of trouble with my right hip. Nothing was ever really done about it, despite the many specialists I saw for it—including my rheumatologist. I basically went ’round and ’round the medical merry-go-round—which is nothing new.

Throughout the last decade, this has been my experience over and over again.

So when I started having trouble with my big toe on my right foot, of course I totally, naively thought things would be different this time. After all, my rheumatologist diagnosed me with reactive arthritis last year and started me on treatment. I’ve been taking 1,500mg of Sulfasalazine every day for several months, but it really hasn’t made much of a difference. Lately, my joint pain has changed from a deep ache to an almost bruised feeling on top of the ache.

When I went to my rheumatologist for a followup, I let her know about all of this. Since she’s leaving the practice this summer and her spot is being filled by another rheumatologist, I figured we’d probably come up with a transition plan. I asked her about trying something else, and she said she wanted to continue the SSZ. Since there were periods of time when I’d stopped taking it for one reason or another—insurance lapse, hospitalization, total brain fog—I was willing to give it another shot.

She didn’t seem too concerned about my toe, though, and sent me on my way. No transition plan. No mention of trying another DMARD.

Doctors are overbooked. I know this. It’s usually prudent to stick to just one issue during office visits, otherwise things get lost in the midst. So I called the office and spoke with her medical assistant, reminding her about my toe.

I can barely bend it, and definitely can’t put weight on it. It feels just like my hip did for all that time. The thing is, my hip didn’t just magically stop hurting. It’s still there. The pain in my toe makes my hip look like a walk in the park—which I’d never imagined could feel any worse.

This is how it goes. I get used to one particular pain level, only to have my body say “Challenge accepted,” and throw something else at me.

My rheumatologist’s solution was Aspercreme with lidocaine.

Instead of facepalming and arguing, I replied that I’d give it a shot. Her assistant told me to call back if it didn’t work.

Here’s the thing: I have an entire box full of things I’ve tried that didn’t work, or worked a little but then stopped. I’ve got lidocaine patches somewhere in my house that I tried on my hip. I have half empty tubes of Voltaren. Tiger Balm does help quite a bit, but if I reapply too often, it loses its effect.

My rheumatologist is very by the book, with a light touch as far as treatment goes. I really appreciate the fact that she doesn’t send me off loaded up with prescriptions. I once had a primary who did just that, and it almost killed me because their office didn’t pay attention to interactions and I blindly trusted them. But it’s starting to get really frustrating that, with every new achy joint, I have to start from square one with her.

It never goes this way:

“Ah, yes, another trouble joint. Well, we’ve tried X, Y, and Z in the past, so let’s not even bother with that. Let’s move up to Plan B and not waste any time.”

I understand why she does it. But I almost wish she was a bad-ass like the attending in the ER who smashed the inflammation in my body with a super dose of Prednisone and a shot of dilaudid to tide me over while the steroids got going.

Instead, I had to play the game. Every chronic pain patient is familiar with this game. I already knew Aspercreme, Icy Hot, etc don’t do much of anything for me. But I still had to do things her way. I called back and let the office know that it didn’t work, and my rheumatologist personally spoke with me and told me that she wanted to try a week of Mobic (an NSAID). If the Mobic didn’t do it, she told me, she’d have me come in for a cortisone shot.

Thankfully, this was a prescription so my insurance covered it. Still, I’d already tried Mobic in the past, several times. It doesn’t work. But again, I did things her way because she’d told me she’d give me the cortisone shot; I knew ahead lay some kind of relief, even if I had to spend another week alternating between icing my toe and wanting to just rip the damn thing off my foot.

I did the Mobic for the week and, as expected, it didn’t help.

When I called the office, I was told that they would speak with my rheumatologist and find out when she wanted me to come in. Because I was still in editing land and doing a whole bunch of other marketing/administrative things (and I don’t get a signal for my phone inside my house, sigh), I missed the callback. I didn’t get to listen to the voicemail until Saturday morning. It was not good news.

In the voicemail, my rheumatologist’s assistant told me that she wants me to see a podiatrist and that I have to set up the referral myself. There was no mention of my cortisone shot.

I cried for a good solid thirty minutes, and then on and off throughout the rest of the day.

I know that steroids are controversial in the chronic illness community (for both patients and doctors), so I really don’t want to hear “That’s what you get.” My issue is, I was told I would get one. I was promised relief. Instead, I was passed off to yet another specialist. This has been the pattern for the last nine years.

I’m tired of this. I’m tired of feeling like my doctors either don’t believe me or don’t know what to do with me. I get that my rheumatologist is leaving the practice and probably just doesn’t have the time to squeeze me into her schedule before she goes. I get that. I really do. I’m crazy busy, too. But what I don’t get is why I had to go through all of this—the office visit, the phone calls, the Aspercreme, the Mobic—when I was only going to be handed off anyway.

I’m sorry, but I won’t be seeing a podiatrist.

I have autoimmune arthritis. Next month it’ll be my elbow or my hip again. I shouldn’t have to see a different specialist for each body part, going through the entire thing all over again: the consult, the battery of tests, the waiting, and then maybe some treatment. Emotionally, I can’t continue coping with the strain of this pattern. It’s exhausting. Physically, I can’t wait an entire summer before I get this taken care of.

Summer is supposed to be for getting outdoors, doing what little physical activity I can. It’s not supposed to be like winter, where I sit on my couch with my pain meds and heating pad, missing out on family functions.

I’ve been doing this for almost ten years; I’ve been doing everything their way. Only when I push back—insist on treatment—do I ever get anywhere.

So, this afternoon, I called my rheumatologist’s office again. I got the front desk’s answering machine (it’s Monday, so they must be crazy busy after the weekend), and left a message asking for clarification and repeating that I’d been told that I would be able to come in to the office for a cortisone shot.

And I’ll call again tomorrow.

And the next day.

Every day, if I have to.

I’m putting my foot down (but with all of my weight on my ankle, off my toe, of course).

I think I’ve patiently played the game long enough.

The Lump On My Chest

via Unsplash
via Unsplash

I knew that stress aggravates my arthritis. In the last nine years, some of my worst flareups occurred during stressful times in my life. Because I also suffer from PTSD, it’s extremely beneficial for me to incorporate relaxation into my daily life. If I don’t, I easily become a messy blob of pain, anxiety, and depression—all of which, of course, feed into each other. So when the news dropped that my publisher is closing its doors, I knew right away that it was time to ramp up my R&R.

After months of skipping my nightly meditation routine and daily yoga, I forced myself to get back into it. I use aromatherapy almost daily—okay, yes, this is actually how I justify my Yankee Candle addiction, shut up—and nightly (with lavender essential oil on my wrists and pulse points on my neck), but ramped that up too. Still, I almost immediately felt the effects of stress on my body.

I have chronic pain. I’ve had Reactive Arthritis (AKA Reiter’s Syndrome) since 2007 (and my rheumatologist tells me it could still be Rheumatoid Arthritis). Mine is enthesitis-related, meaning the inflammation is where my tendons insert into my joints. It’s brutally painful, and I’ve been in a flareup for over a year now (with a brief respite in September/October because of Sulfazine). With the weather all over the place and allergy season under way, my pain was already high. (Hay fever causes inflammation in the body. Just one more reason for me to religiously take my allergy medicine.) But last week something completely new happened to me.

I’d heard of costochondritis from other spoonies, but hadn’t experienced it myself. I do get swelling in my ribs. It’s really only uncomfortable if I wear a “real” bra, which is why I’ve basically been living in Gilligan O’Malley camis for the last couple years. (Praise my lord and savior Target.) I’ve had a rough time with my ReA, so was very thankful that I hadn’t had to deal with anything like costochondritis, because from what I’d heard, it’s pretty nasty. And now I can confirm this from firsthand experience.

Since the news dropped, I’ve had heartburn and nausea on and off. (Thanks anxiety.) Usually drinking 2-3 glasses of ginger ale eases it. At this point I should buy stock in Canada Dry. But last week, as I toweled off after a shower, I noticed that there was a big lump on the right side of my sternum, right under my right collarbone. And it hurt, even if I didn’t touch it.

So of course I ignored it. Or tried to, anyway. As the night wore on, it became more and more painful. It felt like someone was sitting on my chest. Taking Tramadol and massaging it eased it a bit, but even after my heartburn abated, it was still there. I tweeted about it like a good #spoonie, but it was midnight and I didn’t really expect anyone to be on. Because I enjoy torturing myself, I started Googling my symptoms.

After examining a diagram of joints in the sternum, I determined that the swelling was dead on the manubrium—the joint where the first rib and sternum connect. It was definitely costochondtritis.

Unfortunately, there isn’t much you can do for costochondtritis. You basically have to ride it out. You can take anti-inflammatory medication, like an NSAID, but since they don’t usually much help my arthritis, I figured it probably wasn’t worth aggravating my heartburn any further. I did consider going to the ER and begging for a super shot of Prednisone. One of the last times I had a really nasty flareup, the attending in the ER did that for me and it brought the pain down immensely. I was exhausted, though, and didn’t really want to sit in the ER for potentially hours. I decided that if I didn’t feel any better in the morning, I’d go.

Thankfully, the swelling went down and the next day, it was as if nothing had happened. That spot is still tender to the touch, but nowhere near as painful as my hands, wrists, big toe, and hip have been lately. It’s now hardly even a blip on my radar.

In the days since, I’ve taken care to make sure I’m getting enough rest. My sleep schedule is way out of whack lately, as I’ve been staying up late working and combating pain. I’m easing my bedtime back an hour every night. I’ve now graduated to going to bed at 1am rather than 5:30am. I’m also continuing my nighttime yoga routine (mountain pose, standing forward bend, triangle pose, and wide angle standing forward bend). Stress is fun times.

Breaking Through the Pain

via Unsplash
via Unsplash

These last few weeks have been miserable. We kicked off the new year without insurance and, of course, I ran out of Sulfazine at the same time. I’d already been having breakthrough pain. Throw in the brutally glacial temperatures that rolled in with January, and the week and a half or so without my medication was hell. Thankfully, I had some Tramadol left, so made due until I was able to get our insurance turned back on.

(Never, ever take health insurance for granted. Ever. Lesson learned.)

I’ve refilled my prescriptions and resumed my regular dosage, but it’ll be some time before it builds up enough in my system again to quell the fire in my body.

Inflammation is the worst.

I’ve got more Tramadol and Tiger Balm to carry me through, but after four months with hardly any pain, I’m having a hard time readjusting. On the first really bad day, there were a lot of tears. The other night, I was so exhausted I collapsed on my couch around 8pm and passed out under my electric blanket.

(Turns out Invader Zim is so much weirder than I’d remembered, but the comfort of the show I loved in my teens was enough to lull me to sleep.)

So I’m writing again, but very slowly. Last year, when I was in remission, I worked my way up to writing at least 3,000 words in an hour. Now I’m lucky if I can churn out 1,000. Even if my wrists and fingers didn’t hurt so much, the rest of the pain throughout my body is enough to blur my focus.

It’s frustrating, to say the least.

But I have learned to appreciate the power of scissors. Almost all packaging defeats me—even Emergen-C packets with their perforated edges. I’m finding that there are few problems a good sharp pair of kitchen scissors can’t solve.

(Emergen-C, by the way, is a wonderful invention. One of the symptoms of my disease is bone deep fatigue—and it’s also a side effect of Sulfazine, sigh. Emergen-C gives me the boost I need that caffeine can’t quite achieve anymore.)

I’ve been taking every day very slowly, but I have to say I’m relieved the weekend is here.