My flare reached new levels, and once I realized I couldn’t eat or drink enough to prevent passing out, I went to the ER. Actually, I went to the ER because of that, and some persistent lower left quadrant pain and bleeding. (I also spiked a fever which was present at my doctor’s office, but ran away in time for ER arrival. Thanks.)
The first ER I went to on Tuesday. They treated me like absolute garbage. I was accused of being a drug addict even though I explained my bad veins were the result of my Behcet’s and repeated sticks and infusions. Despite them having my chart, including an admission to their affiliated hospital a little over a year ago, I was repeatedly asked what drugs I inject.
Thank for making me feel worse about myself, and for avoiding the actual reason I’m in your damn ER.
So I wait, and wait, and they put in an IV but don’t flush it…like ever…which for me means it’s borderline useless. I’m in the waiting room, with at least 40 people, and the room is made for at least half that number. People are crying, coughing, the whole plethora of possibilities. For better or worse, I’m in and out of it because I’m just so dizzy. I want IV fluids more than I’ve ever wanted them before in my life. Then, I realize I’m going to faint. I’d been waiting for over two hours at this point, I’ve asked for zofran, but wasn’t given any. I had a partial seizure, and then another, and I realize I need to tell someone, but the triage nurse keeps disappearing into the back leaving all of us sick folks to fend for ourselves (unless you’re mobile which I wasn’t).
I manage to show him the word “epilepsy” on my emergency application on my phone. (During partial seizures I often know what I want to say, but I lose the ability to say it.) He understands me, but then does nothing.
Yes folks, I tell this man via pointing that I’m going to seize, and he just sort of acknowledges me, then walks away. Thanks.
The partial intensifies and now the whole room looks funky, and I’m overcome with this sense of fear I’ve never experienced. Usually I kind of just let go and let my brain and body do what they have to do, there isn’t a point in fighting the inevitable, but this time I really fought it. Perhaps not the best idea. I wake up in the back, and I can’t get nurses and doctors back on track. I get it, I had a seizure, but I don’t remember any of it. I offer to go wait in the waiting room again. I literally was like, “Hey, I know you’re busy, I’m still woozy, but I’m not here for this, so can we just get me back to waiting for my turn?”
I ended up leaving after six hours, with no fluids, no medications other than seizure drugs, and no answers.
Wednesday rolls around and I’m sent to another ER. This time they were much nicer, but things still got shady. My lab work was normal, but per my PCM’s instructions, I got steroids. Beyond grateful! There were some hiccups, namely they were out of small IV bags so they had to push reglan slow through my IV. Between the steroids and the reglan, I got massive jitters. I was told I was being admitted and that I’d be meeting with the rheumatology team at that hospital the following day. Then things got sketchy.
I was going to be sharing a room. Not the end of the world, but not ideal when you’re immune compromised. We get to the room, and I realize sleeping with the TV on means annoying my bunkmate. I told myself I’d use my phone. As I’m trying to process all of this, I realize that the nurses are confused. The other patient is on precautions! She’s coughing in her sleep, on the other side of a flimsy curtain, and the nurses scan’t sort out why someone on reverse precautions (me) would be in a room with a patient on flu precautions (her).
I am not spending the night in the hospital with normal labs, if it means sharing a room with a flu patient!
This kicks off a debate between me and the nurses. Why am I even taking up bed space? They can’t control my nausea adequately in the hospital because there is a limit on nausea drugs in terms of dosages. I metabolize them fast, and end up constantly nauseas an annoyed by it. I’m going to be sharing a room, while vomiting, with someone who has the flu? No thanks.
To be honest a large part of it was just steroid induced panic. Had they shown up and medicated me, I’d have been okay(ish), but it just didn’t make any sense to me. Why spend the night, try and talk to a whole new rheumatology team in the morning, and expose myself to the flu amongst other nosocomial infections?
I haven’t talked to my doctor since leaving AMA. Yes, folks, I left against medical advice..only not really. The only reason I was admitted was because my PCM was worried, but the labs confirmed I didn’t have sepsis (his worry) and the doctor who was in charge of actually admitting me agreed I was fine to go home. His superior didn’t want to take the risk, hence I had to sign out AMA.
Why would they put a reverse precautions patient in with a patient who was contagious enough that nursing staff had to wear masks around her? I know the hospitals are overrun with flu cases, but that doesn’t mean that chronically ill folks should have to forgo proper care. I do wish I could have seen a rheumatology team and perhaps pushed for quicker treatment via steroids and IVIG, but they wouldn’t have been able to approve the IVIG quickly. Also, three days of high dose steroids, in hospital, while sharing a room with someone highly contagious? That is such a bad idea.
The lesson is go to your usual hospital for these things. My doctor had hoped one of the two big centers could have placed my port, but that wasn’t going to happen either, not unless it was a prolonged admission with the start of IVIG included.
That’s been the last few days! I have phlebitis in my left arm from all the sticking, and I’m still sore overall. I have been able to eat fries and tots for some reason, but only in small amounts. Carbonated water and Sonic slushes have definitely been saving me, too. I said a lot of stuff this past week that I regret, most of it due to lack of usual medication, and the addition of emergency ones. I also couldn’t think clearly because of the lack of nutrition. Now I’m stuck in this place where I regret so much of what I said, but I can’t easily take any of it back.
I wish people understood that not everyone with chronic illnesses handles emergent situations the same way, and even people who seem strong on the outside, can fall apart in strenuous circumstances.
I suppose time will tell if friends forgive me and support me still. All in all it was a really rough week, and I’m glad that it’s over. I’m hoping I’ll get some good news next week, and that I find the forgiveness of my friends, too.