Anti-Anxiety Medications, Emergency Rooms, Drug Seeking, Forgiving Doctors and Patients
When I went to the Emergency Room twice for unimaginably painful bladder issues, I pulled out my insanely long medical ID card which stated clearly that I cannot have narcotic or opoid medications due to my functional motility disorder. While such medications are typically given for acute pain, they drastically slow movement in the GI tract, and for me that is a recipe for disaster and increased pain, which I definitely didn’t want because I was already passing out from the bladder pain. In fact, the pain was so intense I could not talk, and was silent screaming. If you’ve never seen a silent scream, I hope you never do; it’s downright gory.
I didn’t know that I was experiencing bladder spasms specifically, though I’d seen Dr. Z had written “bladder spasms” in her notes from a few months earlier when I discussed my incontinence issues. Guts and organs spasm differently than legs, arms, and backs. Given I was already taking high doses of Baclofen for skeletal muscle spasticity, and that Baclofen and Flexeril and other antispasm meds work specifically on skeletal muscle…and bladders are smooth muscle (like intestines and internal organs), these weren’t going to help either.
Eventually a smart doctor in the ER#1 asked if I’d had any anti-anxiety medications before. I was unfamiliar with all the meds she named, had never taken any. She said they could help decrease muscle spasms. I questioned her to make as sure as possible that I’d not have a bad reaction or major issue with my gut. She felt this was a pretty safe way to go.
The antianxiety meds certainly helped with the spasms in my bladder and decreased my pain, but my pain was still very high and I was concerned about being discharged from ER#1 at that time without either enough medication to help me manage the pain until I saw a urologist for the first time or the promise of an appointment with a specific doctor at a specific time the next day. They PROMISED I’d get an appointment the next day. The day I went to ER#1 was July 10th.
I’d been through that situation many times before – the ER at any number of hospitals sends (or doesn’t send due to negligence) a referral to a doctor I need to see IMMEDIATELY for proper diagnosis/treatment of my problem and then I run out of medication while waiting for all that to get sorted out and end up back at the ER begging for meds (which never looks good on my end, sets me up to look like a drug-seeker) and I’m one very unhappy camper because referrals and promises that “you’ll get to see the doctor tomorrow morning” are LIES and I’m in curl-up-and-die kind of pain because nobody gave me enough meds despite my own exhausted attempts at self-advocacy AND the fact that I’ve never used hard medications before due to said side effects, and wasn’t even asking for them! Yeah. It’s enough to make one lose their mind!!
Of course my friends made phone calls early the next morning to get me in to see the promised urologist whose office said no referral was received. Hours spent calling the hospital and tracking down the referral. Hours spent calling other urologists who wouldn’t take me STAT and many would not take me at all because A) I was a NEW Patient and B) I am a Medicare + Medicaid combo patient, or the appointment would be 4 weeks away (and I had 2 days of pain meds from the ER#1).
Naturally, I ended up back in the ER, but I went to a different ER, which I’ll call ER#2, the second time because I was frustrated about the outcome at ER#1. This was July 12th. Gratefully, ER#2 was significantly more helpful, closer to my home, more timely, they did a CT of my bladder to rule out other problems, and they gave me more medication.
Still had referral issues afterwards, however, so had to call all my doctors again begging for meds because we were splitting pills to give me just enough pain relief so that I could stay out of ER#3 (what a hellhole ER’s are!) while again waiting for a urologist appointment, and NONE of my doctors would prescribe these meds because they are anti-anxiety meds, heavy-duty stuff. Countless more hours of phone calls and advocacy by my friend ensued. Dr. Z eventually came through with enough medication to get me through a few days (over a weekend) before I could see the urologist with whom I’d finally obtained an appointment five days after my initial ER#1 visit.
When I got to see the urologist, my anxiety meds used for pain were quickly running out yet again and he wouldn’t prescribe them either, only gave me an antibiotic. I asked specifically for the meds because they were the only thing that helped and I explained I’d been asking docs for days to help me. He again said he couldn’t, and I had a few choice words about my situation, not directed as an attack at him, but which nearly got me kicked out of his office (which would have been extremely counter-productive). He became quite offended and questioned why I’d gone to several DIFFERENT emergency rooms rather than just going back to the one I started off with rather than “starting all over” with a new hospital ER (for which I had several good reasons). I felt at once entirely bewildered, hopeless, misunderstood, ANGRY, INTENSELY desiring so much to defend my character against what I felt was a potential question of drug abuse or drug seeking behaviors, yet also feeling so EXHAUSTED by a combination of intense pain and the numberless previous failed efforts to explain my reasons and conditions to other doctors and now to a doctor who was ready to throw me out on my tail because I’d used the F-word in explaining that I didn’t want to go back to the ER and I was suffering. I felt like melting as I felt his temper rise; he turned red in the face because of his own anger, then told me that if I didn’t respect him and his office, he literally said he’d boot me out the door and let it hit me in the rear on my way out. He honestly scared me. Realizing this was the only guy who COULD help me if he WOULD help me, I toned it down a bit and agreed to his ultimatums. While I realized it was out of line for me to ask multiple times for these meds, perhaps even to assert myself, and certainly to use the F-word when referring to the ER, I didn’t at that moment feel a hint of shame for doing so. I just played what I felt, at that point, was a power trip game since doctors always win anyways. The appointment ended and I felt sure this doctor would remember me for a long time…..
The fight to get what I needed continued because the meds still weren’t coming. Dr. Z came through again with just enough medication for me to get in to see her in two more days, on the 17th. Unfortunately, when I arrived on time for the appointment (my friend was driving of course), I was told that Dr. Z wasn’t even in that office that day and I had no appointment. There had been a scheduling error, and the soonest I could get to see her was on the 23rd of July, 8 grueling days away. The friend in charge of my medications had been more or less halfing my meds as much as possible so we wouldn’t end up in this situation yet again. Good thing she did; we kept skirting the edges of ER admission daily. The pain…oh….the pain. I though I was going to SCREAM…perhaps I did and I just don’t remember for sure.
Granted, I’d not yet received an official diagnosis by the urologist to “hand” to Dr. Z because he was still thinking UTI I guess, as he’d said my pain should have decreased significantly within 72 hours (which was laughable, as I was still dying after 72 hours!) of starting the antibiotic.
You see, it’s not like it’s JUST my bladder that hurts. It’s not like it’s JUST my LEGS that hurt due to CRPS. It’s not like it’s just my intestines that hurt from my GI diseases. It’s like ALL OF THE ABOVE HURTS ALL THE TIME! And if not every part listed is hurting, I can assure you one of them is making up for any lack of pain in the “slacker” that day. The kind of pain I endure daily, I’m quite sure, is a type of exhausting chronic burning stabbing tearing freezing squeezing pain 95% of people haven’t imagined in their worst nightmare, haven’t experienced during childbirth, haven’t ever even realized is possible. When I tell you I’m hurting, it’s best to just assume you have NO IDEA how badly I hurt…. Unfortunately, most doctors don’t assume that, which makes them both compassionless and clueless jerks who are still convinced they’re God and know pain better than *I* do.
If it weren’t for Dr. Z and her nurse Gail with whom my caretaker friend had MANY a conversation, I would have lived the whole past month in the hospital. She decided to switch my medications which I wasn’t thrilled about but accepted in desperation and with gratitude. I saw her on the 23rd and we worked out a few kinks and I learned a lot from her during my appointment, which will be another blog post.
I saw my urologist again on July 26th. Between our first meeting and this one, I had written a sincere apology note. It was short and to the point – I realized it was inappropriate for me to use a bad word in his office, which was disrespectful to him and his staff whether it was targeted at them or not. I asked him for forgiveness. When he came into my room, I again asked for forgiveness and said I was sorry for using disrespectful language. Perhaps he’d read my note, as he softened and told me I was forgiven and that the incident was behind us as long as we could have a respectful relationship in both directions so that this will work. But then he also apologized sincerely to me for flying off the handle and over-reacting during our last appointment. I fully accepted his apology and we had a “do-over”. We handled it and moved on.
The good news is that the urologist I see is very factual. During the second appointment he spent time with me explaining what was going on in some detail, really answering my questions. I got the sense that once he realized it was a diagnosis of neurogenic bladder, that I live with incredible amounts of pain, and that I wasn’t suffering from just some run-of-the-mill UTI (which I suspect hurts one heck of a lot less than what I’ve endured in 90% of cases). He told me he wasn’t surprised nor did he have any intentions of down-playing my pain, but that pain management was the specialty that would be able to help me now; he’d done as much as he could medication-wise.
I actually started to kind of like him at that point. I mean, we got off to an awful start, but we both straightened up and forgave, then moved on so we could be productive. He’s to the point and doesn’t play around, tells you how it is straight up. I’m cool with that.
What I’m NOT cool with is Emergency Rooms and doctors who don’t follow up and keep their word, who send referrals and promise appointments which don’t happen, and who will not give enough medication for a patient to get from point A to point B without another ER visit. What I’m NOT cool with is doctors who assume or accuse that a patient is drug seeking or an addict without hearing him/her out, looking through his/her medical records, or asking about the patient’s history in detail before coming to such a conclusion.