I ended up seeing my rheumatologist sooner than expected, before my lab work was even done, because of some severe pain issues that landed me in the ER. I was livid, to say the least, when the ER doctor suggested that the reason I was having such bad pain, was that I was stressed. My pain tolerance is very high, so the fact that I was contorting my body into insane positions to try and make myself comfortable for even a few seconds, definitely says a lot. The nurse felt around, and I had some major pain, but the doctor didn’t even bother to do anything other than listen to my lungs.
Now, I know I couldn’t get a CT or an X-Ray (I’ve gotten way too much radiation already this year apparently), but that doesn’t mean that I should just be ignored. Tell me the options. My labs were normal, including urine, which surprised me, because I really felt like my kidney was on fire. I will credit the doctor with at least saying I should follow up with primary care and my rheumatologist ASAP, but that is offset by the rest of the things that went wrong.
Despite telling the nurse that I am very sensitive to pain medications, and really would only need a quarter of what they give someone normally, I was given a massive dose of Dilaudid.Worse? It was coupled with a decent amount of Ativan. All given…IV.
My pain was gone, but I was grateful for the Zofran I’d gotten beforehand, because the room was spinning. I had a few moments where I was okay, but the rest of the time it was absolutely horrific. I knew it was a Saturday, and that the ER was busy, but I’d gone in earlier to try and avoid that. (I’d also suffered through the pain on Friday night hoping it would go away.) After only half an hour or so, the nurse came in to discharge me. I couldn’t walk. I couldn’t remember my address. I was given a little longer, maybe 15 minutes, and then told my only option was to take a blanket to the waiting area and sleep it off out there.
They tried to send an immunocompromised patient…to the waiting room…to sleep…
I dragged myself wobbling out towards the exit, and managed to get into a Lyft. I was nauseated, but made it home, where I spent a long time on the bathroom floor shaking violently and nauseas, with cold sweats and the spins. My friend said it sounded like withdrawal which is ridiculous given it was one dose, but she had a point. It was like my body was displeased with the amount of drugs it was given, and because I metabolize drugs quickly, it was extra displeased with how fast those drugs exited my system
Anyhow, I white knuckled my way through Sunday courtesy of Norco, even spending some time at a pool party. I told myself that the pain was a fluke even though it periodically kicked up from time to time. Then Monday came, that was the day I was seeing my rheumatologist.
The appointment seemed futile. She told me that my kidney pain was odd, but likely not related to Behcet’s as Behcet’s doesn’t impact the kidneys. (Not entirely true, but I wasn’t going to correct her. The rarity is what it is, so I guess I just went with it being highly unlikely. We talked about how I’d been feeling, and that while I had a lot of of the major symptoms under control, the GI bleeding that had returned was obviously concerning. Also worrisome were the skin manifestations. While mild, and short lived, it was an indication that the Rituxan alone wasn’t enough to keep my Behcet’s at bay. My inability to stomach medications was making my treatment complicated. She prescribed Cell Cept (Mycophenalate), which I’m starting Tuesday. I wanted to start it sooner but I just couldn’t risk the stomach issues because I’m starting Ketoconazole tonight, and that is rough on my stomach. I’ve also been prescribed Cymbalta (despite the increased seizure risk) because of the depression caused by ironically my seizure meds. I’ve taken it before without issue, seizure and stomach wise, but my stomach has been a mess lately and I wanted to space out the new drugs.
What she did mention nonchalantly was that a CT scan I’d had several months ago, when I was being treated for suspected kidney stones (blood in urine, potential infection because of white blood cells, but no bacteria). Apparently the radiologist had noted the presence of “medullary sponge kidney,” and left it at that. I’d been told at the time I had some renal calcification, which my primary care doctor had said could mean I had a stone, or I was forming a stone, but it wasn’t a stone itself. Basically he didn’t know, it just looked funny to him. Another doctor said it was totally normal. When I looked up “medullary sponge kidney,” I was floored. Apparently if I do have it, it would potentially explain a lot of my weird urinalysis results, and my recurrent kidney infections, infections I often get without ever having symptoms of bladder infections. It’s why I don’t just umbrella everything into UTI, because for me there is a difference.
The next morning I got up early and the back pain was back was absolutely insane. I go to the bathroom, and try and get back to sleep since I don’t have to be to my primary care doctor’s office for a while, but I can’t get comfortable. I’m convinced I’m not going to make it, that I’ll end up needing to go to the ER, because I’m in that much pain. I popped a nausea pill, unable to take Norco because I planned on going to see my primary care doctor, hang around that part of town for a couple hours, and go straight to my psychiatric medication appointment. Now I’m thinking I’m going to just sleep in the shower.
I got in, and the warm water felt amazing. I tend to sit on the bench I put in my shower, or just sit on the floor of the shower itself because I don’t have the energy to stand when it’s too hot. As I’m sitting on the floor the pain comes back and I can’t do anything but brace myself and kind of yell. (Thankfully the roommate was gone.) Suddenly I needed to pee, which annoyed me since I’d just gone, but I went, and the pain was oh-so-familiar. Of course at the time I wasn’t thinking, “This is what it felt like when I passed that kidney stone a while back.” No, I was thinking, “Make it stop!” For a moment I thought I was going to pass out from holding my breath, but then, the severe pain was gone, leaving an achey trail in its place. I put my hands down and shouted, because something pointy jabbed me in the hand. That was when the realization, “Oh shit kidney stone,” came to me. I tried to find it in the water, but it had already moved towards and then down the drain. To this moment I think about how it felt to get stabbed in the hand by that thing, and the fact it was in my kidney and ureter.
My doctor was nice, agreed it sounded like I’d passed a stone, and also agreed that the lingering pain could be from the stone, or potentially a second stone. He also stated I’d been through way too much radiation to do imaging studies, and if the stone I passed was small, and I was still urinating and feeling okay, that there wasn’t too much to worry about. We talked about my Behcet’s and he didn’t want to add any labs. I got my steroid injection, by the medical student, who was kind but really sketchy with the needle. Both my doctor and the med student tried to adjust my back. My doctor got it to crack a few times, but I finally had to tell him to stop with the lower back attempts. I was in too much pain, and I really needed to not vomit because I had things to do that day.
The psych appointment was irritating. I’d been mislead at the first appointment by being pawned off on the nurse practitioner, probably because of my insurance. She was nice, so I figured it would work out for therapy, and for med control, a kind of 2-for-1 scenario. Only, I find out, she doesn’t do counseling. She’s strictly meds. Worse for me? She doesn’t want to do Xanax or Klonopin either, despite my insistence that I’ll still need it on an as needed basis. I also remind her that I’ll need to taper off because I’ve been on it for a while. She asks if I really want to keep taking my sleeping medication, if I’m having to add Klonopin to make it work. Um, yes? The reason it isn’t as effective is that I’ve probably gotten use to the dose. I’m actually only a step above the lowest dose, so if anything, I want a higher dosage.
Then it happened, the thing we all dread, but in reverse: she suggested that my depression was a result of being in pain, and attempted to prescribe Lyrica, even though it would mean discontinuing my Neurontin which as worked for a variety of my issues for years.
I’ve had doctors suggest my pain was from my PTSD, or general stress an anxiety, but this was new to me. A reverse situation. Yes, my illness contributes to my depression, but not significantly enough to warrant medicating me, especially if all you’re trying to treat is anxiety and pain! Plus, I’m not in that much pain, minus the kidney stone situation. My daily aches are fine, it’s the nausea that bugs me. We went back and forth for a while, because I was adamant that she understand my pain and health were not the main issue, my Keppra was, and that I needed something for depression and maybe a little anxiety, but that I didn’t need it because of the Behcet’s alone. I ended up with Cymbalta, despite the warning of lowered seizure threshold. I was getting aggravated with her other suggestions, drugs to treat things that she wasn’t being asked to treat, in an attempt to make me feel better overall.
I’m struggling with severe depression that comes and goes because my medication to prevent seizures is changing my brain chemistry. Give me something to counter that, please and thanks.
Now it’s all just a mess for me. I don’t feel well. I’m starting the Mycophenalate on Tuesday. I’d start it sooner but if it does give me diarrhea it’ll ruin some plans I have. I’m just wondering where it all comes together and falls apart I guess. There was talk of research clinics, and while I want that before I consider full chemotherapy, I wonder if there is something weird with my Behcet’s. It’s like a weed that won’t die completely. It’s been dented, but it still continues to be a pest.
We’ll see what the blood work says. The steroid shot immediately cleared up my facial break out, but the fatigue lingers like a plague.