Well that was fast. I’m off the Plaquenil (hydroxychloroquine) for good. I’m so weak, dizzy, and bloated. I don’t think it’s the drug’s fault, honestly, but boy does it amplify my IBS pain and bloat by like a bajillion.
I can’t even. My abdomen is so tender to the touch. There isn’t room for these behemoth-like intestines.
I messaged my doctor who reminded me we didn’t even have confirmation that this (waves at myself from head to toe) is autoimmune. He agreed I should stop taking the Plaquenil.
Gah! It’s so frustrating not knowing how to fix this.
There are a couple of bright sides to this story, though. First, Dr. Rheumatologist called in a prescription for a steroid dose pack. Praise jeebus!
I’ve been trying not to beg—in case they were a terribly ill-advised treatment—but I’m desperate.
I don’t know what’s causing these additional symptoms, but I do know perfectly well my body needs a little assistance to even have a chance to repair what’s wrecked.
In the past, palliative care would give me a short course of ‘roids. However, I don’t have palliative care here in Edwardsville, which means quality of life often takes a backseat to diagnosis.
I get it and I respect it, but it does present some challenges for a woman 7 years out from a brain tumor diagnosis. Like hooray, I’m alive. But also? It’d be nice if I could, you know, get out of bed.
Second bright side: I feel so awful this evening that it’s clearer how much better I was doing eating smaller portions more frequently, meditating daily, and not having to fuck around with health insurance.
(Things went sideways with Dan’s Medicaid today, but I don’t feel like explaining in detail. Suffice it to say we had enough on our plates already. And that extra $60 we need for his meds now wasn’t exactly budgeted.)
Anyway, here’s hoping the steroids give my body the boost it needs. It’s been trying way too hard for way too long.
I’ve been thoroughly enjoying not having any doctor appointments to blog about this month, but the medical mystery of whether or not I have some kind of chemo-induced lupus still looms.
I started back on the Plaquenil (hydroxychloroquine) last night. I’m not feeling a hundred percent—more on that in a second—but I think things are good enough that I can track whether the medicine is going to be helpful.
Plus, when I stopped taking the Plaquenil, I told the nurse practitioner (and myself) that I would start up again when I felt better. My next appointment with rheumatology is at the end of October, so given how long this drug might need to take effect, It seems like a good idea to give it another try now rather than later.
I was feeling better after the anxiety work, and I started reintroducing some of my favorite foods to test my IBS. Though I haven’t endured my worst IBS-C ever the past couple of weeks, constipation has definitely moved back up the problematic scale to affect my overall quality of life.
Over the weekend I had a buffalo chicken pizza. It tasted glorious but had jalapenos on it. I removed the jalapenos originally when placing the online order but screwed up another part of the order, deleted the wrong pizza on accident, and then forgot to remove the peppers when I added my pizza back. (Honestly, the buffalo sauce was probably too much on its own.)
No big deal, right? Ha!
The inflammatory effects were immediate. I picked the jalapenos off subsequent slices, but the damage was done.
Not that one single misstep undid me. The weather was unstable. I was already feeling worse, which kicked off a series of “eat this to distract yourself from the pain” cues in my brain. I knew what was happening, but my lizard brain wasn’t interested in the pedantic warnings of my prefrontal cortex.
At least I understand the process of the habit now, thanks to Unwinding Anxiety.
Anyway, it’s pumpkin spice latte season, so I was off my sleep game too, consuming caffeine like it doesn’t keep me on the edge of awake all night.
I’ve spent the last three days wondering if emergency surgery would be required to clear a bowel obstruction.
Here’s the thing. If me talking about poop troubles you in any way for any reason, you need to find something else to read. I have IBS, zero qualms, and a bag of edibles making me feel pretty bold right now.
I promise you I can’t be bothered to care whether this topic makes you squirm. Plus there are people out there who need me to write about this as much as I need to tell the tale.
Last night I went to bed near tears, my abdomen hurt so much. I spent most of the late afternoon using the shiatsu massager someone gifted me a couple of years ago on my belly. The heat and massage relieved some of the discomfort, and I was desperate.
Plus, I’d read that self-massage can relieve constipation and since I’m too weak and fatigued, I knew it was the closest I was going to get. I had to try.
I also sipped hot tea. I ate Activia. I took laxatives. I drank coffee. I threw caution to the wind and ate IBS-D triggers. Then, when none of that helped, I did the only thing I could. I panicked and let the anxiety in.
I laid in bed, staring at the ceiling and contemplating the blogger from 14 years ago who almost died because of a severe bowel obstruction. I saw her face and her hospital gown in my mind’s eye, and I pondered the worst.
Anxiety used to trigger IBS-D, by the way, but not this time. That turd wasn’t going to budge for nothin’.
I spent enough time on the toilet hoping for a bowel to twitch that eventually my legs went purple from the blood pooling around my feet and ankles.
(I have a foot rest, but after so much time even that doesn’t help.)
When I woke up this morning to take my levothyroxine, the water I sipped made me notice just how much I wanted to barf. I closed my eyes and willed away the nausea, falling back asleep for another hour. But when I woke again, the urge to hurl was still there.
I felt that familiar discomfort in my lower left abdominal quadrant where something (it was the poop) was setting off radiating nerve pain. I dug my palm in a little, pressing and pushing down toward my leg. My bowels rumbled.
“This is it! It’s happening! Finally!” I thought.
And so it was that I pooped today.
But you know what was waiting in the wings behind that IBS-C poop? IBS-D poop. That’s what.
No wonder I felt so awful. I might as well have been walking around for days with a cork up my ass.
And the best part is now I get to wonder if this is just ordinary IBS stuff or if the Plaquenil is making shit worse.
A forty-four year old woman can be absolutely certain that something is the right thing to do and still pout and whine about it. Ask me how I know.
My oncologist called and reminded me there was that matter of the nodule on my lung that showed up in the last CT scan. With all the lupus stuff preoccupying my tumored brain, I’d forgotten about it. He didn’t though.
He recommended a biopsy, reasoning that if it is cancer, it’d be so easy to treat right now. A little zap and voila! Early detection and all that jazz.
I know he is absolutely right. But I also know my body’s proclivity for racking up procedures that don’t help identify a damn thing.
He’s going to put in the referral.
Damn it.
When I got home from the rheumatologist’s appointment Wednesday, I was so buoyed too. “I’m taking all of August off from doctor shit,” I told Dan.
Fucking hell.
Dr. Oncologist also sent my lymph tissue off to Cleveland Clinic for a second opinion, which was pretty cool of him. They agree the lymphadenopathy is not cancer, and a couple of other tests also came back negative.
So my lupus theory holds for now, and I’m well aware that lupus can cause lung issues too. In light of that: no vape, only edibles. I get better pain relief from edibles anyway.
That reminds me. While we were talking, Dr. Oncologist asked me again if I’d ever been told I have an autoimmune disease. Heh. So I told him about the lupus not being confirmed or ruled out and about the hydroxychloroquine, and he seemed to think that was a good plan.
I’ve been told numerous times over the course of many years that “something autoimmune is going on” but no one can ever diagnose what exactly it is. I’m trying not to get all twitchy about it while I’m typing this.
“Maybe you’ll get a disease named after you,” Dan joked.
I’ve been thinking about that and have decided if I could name a new disease, I’d give it some attitude. Like “fuck this noise disease” or something.
Anyway, that sound means it’s time to ask for financial help again. Small donations of $10 and/or sharing the link are always helpful.
I’ve only taken two 1/2 pills so far, but I feel different inside. Couldn’t say for sure if it’s the hope or the hydroxychloroquine, but damn. I want food. I feel connected to my memories. I don’t feel like I’m as packed-too-painfully tight in my own skin.
That’s the thing about chronic pain. Just the slightest bit of relief changes everything while your body struggles to understand what’s going on.
Sometimes when the pain inexplicably recedes, panic takes over and the anxiety cranks up. I wonder if I’m truly feeling better or just malfunctioning more.
It’s funny to ponder those things after the fact; I feel silly for worrying when I should be revelling. It’s terrifying to speculate in the moment though. When I’m all, “But I’m not ready to die yet.”
I don’t like my pain, but I’ve gotten used to it. And sometimes it’s difficult to leave abusers. No one needs to understand that for it to be true, least of all the abused.
When brain cancer feels less life-threatening than pain reduction, though, that’s how I know I’m fucked up.
Dan sat at the foot of the bed this morning, holding a big mug of coffee in his left hand and patting my shin with his right. And when he got up and walked to the kitchen, I thought: Wait just a goddamn minute. There was no extra jolt of pain when he touched me.
Who’s life is this? Who’s body did I wake up with by mistake? Don’t tell her I have it. Please.
The meds aren’t supposed to work overnight like that, so it’s probably just good weed, good sleep, and the revelation things don’t have to get worse.
I have to channel all this hope somewhere, so I’ve been reading and contemplating lupus the last 36 hours or so since my appointment with the rheumatologist.
I have been muddling over the best way to characterize what’s going on with me healthwise. I want to talk about it in the easiest way without mischaracterizing the details for new visitors.
So here’s the deal. I’m going to call this collection of progressively horrible symptoms I’ve been experiencing for the last couple of years lupus with an asterisk.
The asterisk meaning the diagnosis isn’t official. It’s just that my particular brand of autoimmune dysfunction aligns best with that diagnosis for now, and I don’t want to mess with the caveats every time I blog.
I’ll just link back to this page, and let people read what they find useful. Of course I understand this Dx could change at anytime, but someone who lands here through a search, for example, might benefit from some context.
Drug-induced Lupus
But for Temodar, I don’t think I’d be contemplating a lupus diagnosis at all. I believe that chemotherapy further freaked out my immune system when the cancer already had it confused.
Just based on anecdotal family history, I think I was genetically predisposed to autoimmune shenanigans.
There’s such a thing as drug-induced lupus, and that makes the most sense to me. I don’t have any scientific proof of that claim; it’s just my best working theory. I’m not a medical professional, but I’m a professional chronic illness patient from way back.
In 2017, I had an ER-level reaction to the increased dose of Temodar that was supposed to kick off adjuvant chemotherapy, and a surprise reaction to sulfa antibiotics shortly thereafter. It just feels like lupus is very likely, you dig?
“Whenever possible, people with lupus should avoid taking sulfa-containing antibiotics (or sulfonamides) as these drugs can exacerbate lupus symptoms in some individuals. People with lupus are also more likely to be allergic to sulfonamides compared to the general population.”
In addition to the sulfa reaction, I’ve had various reactions to weird things that feel like allergies. Sneezing and the usual allergic malaise have come my way after being in contact with previously unremarkable stuff.
“Allergic disorders commonly occur in patients with systemic lupus erythematosus (SLE) and allergies to some drugs may occasionally be related to disease flares.”
Man, everything I eat makes me hurt now. I’ve been blogging about constipation and diarrhea for a while, too. But also there’s bloating, swelling, and constant abdominal pain I don’t detail much because I don’t know what to say. I’m miserable and too exhausted by it to elaborate.
Turns out gut stuff is not uncommon for people with lupus:
“A person living with lupus may develop intestinal issues, such as IBS. IBS can cause similar symptoms to gastroenteritis, such as abdominal pain and diarrhea.”
With the symptoms of cancer and the side effects of associated treatment, it’s hard to know what’s what. Here are some other things I experience that may or may not be lupus symptoms:
So that’s why I think I have lupus and the rheumatologist is starting me on Plaquenil (hydroxychloroquine).
When I try to make sense of why I feel so terrible at a potentially early stage of the autoimmune disease, I rationalize that my baseline was utter shit to begin with. Brain tumors are problematic like that. With that POV, lupus makes a fair bit of sense.
Still, there are symptoms I don’t have—like fever, joint inflammation, and the characteristic butterfly rash—that would help make this diagnosis easier.
Anyway, I don’t care if randos think I’m a hypochondriac, but I want people looking here for potential answers to their own medical mysteries to have a factual understanding of mine.
Yesterday’s appointment with the rheumatologist went so much better than I was expecting.
“Did you see your lab results?” the NP asked as a way of determining just how much she needed to explain.
“I looked at them,” I said deflated. “From what I understand, they are inconclusive.”
“Yes and no.” She explained my results as essentially this: they can’t confirm a diagnosis of lupus, but they also can’t rule it out.
The NP says “It’s always lupus” btw.
HOWEVER, there is clearly some funky autoimmune stuff happening, and she and the doctor wondered how I felt about trying Plaquenil (hydroxychloroquine).
My mood changed immediately. I turned to Dan and said, “Hey! Maybe I can cure some COVID while I’m at it.” And that started a whole bit about Ivermectin and injecting bleach.
She remained very professional as we did our shtick, coping with humor. While acknowledging how absurd those treatments were, she confirmed what we already knew: 45* had no business distributing medical advice.
But this is not about convicted felons or pandemics.
This is about hope.
I didn’t get the steroids I thought I wanted, but I have something to try, y’all! I’m ecstatic.
And instead of hedging about whether this drug will work (it’s a slow burn and might take months to help if it’s going to) and protecting myself with pessimism, I’m going to shoot that hope shit straight into my veins.
I need this. I need to live in the joy of this present moment instead of wondering about the future. (See? Meditation is working.)
Who cares if the med doesn’t work? What I need most now is the possibility that I can feel better. There are things to try and doctors to help me try them.
As my spoonie friend Dawn taught me years ago: carpe diem, bitches. In this moment, I feel better. I’m going to notice it.
When the doctor came in and asked how I felt about giving Plaquenil a try, I think I even used the word “excited.” Not only am I optimistic right now, but no one mentioned peeing in a cup, and I don’t go back to rheumatology until the end of October.
Yee-freaking-haw!
Somebody get Howard Dean in here to help me celebrate.
So, as the rheumatologist explained it, lupus is a complicated diagnosis and the criteria were redetermined in the last five years or so. Swollen lymph nodes are no longer considered.
The way autoimmune things progress over time, though, I may one day qualify for it—or another diagnosis.
In the meantime, hydroxychloroquine could help me feel better and slow the progression of whatever this is.
My Dad used to say, “a likely story” a lot in response to me saying something that sounded fishy coming from a small child.
For example:
“Kids with puppies do better in school, I swear, Dad!”
“A likely story.” He’d lower an eyebrow and give a scrutinous look.
I hear him in my head now as I am writing this, and it makes me laugh, but here I go anyway:
I think I’m allergic to spinach.
I should qualify that by adding I like spinach, but—as they say—spinach does not like me.
Remember the veggie blend Cheerios I was so excited to try? They tasted fine, good even, but within minutes I was sneezing, bloated, in excessive pain from head to toe, and my hands and fingers were both achy and numb at the same time.
So it’s not an Epi-pen situation. Maybe intolerance is a better word?
(I had a really weird episode with arugula several months ago, too. I could not stop sneezing.)
That’s the reason for my most recent break in blogging—I didn’t feel up to the challenge.
Anyway, someone on social media mentioned a histamine intolerance so I’ve been looking suspiciously at foods again.
A histamine intolerance seems very possible, what with chemo, IBS, moderately high eosinophils, and an immune system that seems to always be like, “WTF is this now?”
I decided to test the Cheerios again, for science, but this time with Flonase on hand. I immediately reacted with the same symptoms and felt a little better after snorting the corticosteroid.
I’m no doctor, but I’m pretty convinced.
The new Cheerios are made with spinach powder, which I have come to suspect to be something my body doesn’t handle well. Like, at all. Fresh spinach is less problematic, but I’m still shy about it.
So, I didn’t even open the second flavor of Cheerios. I’m just giving them both away and giving the boxes a couple of middle fingers on their way out the door.
