It's time to talk about it. Let's go back to Virtua hospital in Voorhees, circa May 2011.
But first I have to take you back to before that - back in 2007 or so, back when I was healthy(ish) - or at least before my Crohn's disease and Ehlers Danlos Syndrome and the half dozen or so disorder that go along with it (postural orthostatic tachycharcia syndrome, interstitial cystitis, mast cell activation disorder.. I could go on) - back before these had all been diagnosed and back before my son was born. Back then, I was working full time. I was a well respected police officer who had been promoted twice and who was successful and happy in my career. This was before repeated medical abuse by Virtua hospital forever seriously contributed to my current condition - which can only be described as "disabled." Back then, I kept really busy and it wasn't uncommon that I made regular DUI and narcotics arrests. Back in those days I was angry and frustrated by how easy it was for people with absolutely no medical problems to have a constant supply of oxy, codiene, xanex, dilaudid, morphine and fentanyl (patches and pops!) and how often these drugs contributed to dangerous driving, or inspired violent behavior or was the motivation behind burglaries, robberies and theft - you name it, these meds were on the streets and - it seemed - in everyone's pockets. I guess back then, I was lucky enough to believe that there was almost no one who actually NEEDED those medications, and if they DID, surely they were too sick to be out driving around or shoplifting from Sears.
Many years later, when *I* was diagnosed with a host of debilitating and extremely painful conditions that cost me the career I loved, I couldn't believe that it took a great battle and several YEARS to get proper pain management - to get my pain under control. Here I am, a law abiding, honest person with integrity - I've never abused a drug in my life, and have never "partied" or done recreational drugs... and it took FOREVER to be taken seriously and treated with dignity and respect and to have my pain treated. I remember sitting in so many doctor's offices and thinking "I've been trusted to carry a gun and protect the public. I've been entrusted with the ability to place people under arrest for breaking the law, and in my career, my integrity was EVERYTHING. I never did ANYTHING to discredit myself - I was always 100% honest in my reports and when called to testify. I never trumped up charges or altered evidence, and I always made a VERY sincere effort not to hold any prejudice - I ALWAYS endeavored to treat everyone I encountered with respect, and yet, here I am, sick, and seeking answers and help...and I'm being treated like I'm at best, dishonest, and at worst - a criminal... Why is that? How could that be right?
At the root of my frustration and anger with how I've been treated as a patient, I'm reminded of the WORST treatment I've ever received - a time when I was in the hospital for the umpteenth time (from interstitial cystitis, a condition related to my Ehlers-Danlos Syndrome, but we didn't know that back then. ). This was shortly after the birth of my son, and I had been suffering from horrible chronic pelvic pain ever since my C-section and subsequent six weeks with Mono.
The hospital kept admitting me, despite confusion over how I could be in such bad shape and yet not have a high fever -they were confused by how the symptoms kept coming back, by how I could be in so much pain, and why I wasn't just getting better. Each time, they'd admit me - stick me over and over because I'm so hard to get an IV in - and they'd begin pumping me full of Ciprofloxin and Levaquin... during most of my hospitalization between February of 2011 and July 2012, I was nearly hysterical from the bladder and pelvic and back pain. To add further insult to injury, ALL my joints felt as if they were engulfed in flames and hardening to stone- and yet every time I told the doctor and the nurses, they rolled their eyes and said it "didn't make sense". It had been more than four years since I had almost died from the Crohn's disease - I was on no regular medication except to keep my GI function in order. I had never taken pain medication for longer than 2 or 3 days - with the sole exception of my seven week brush with death back in 2007. But even then, I'd gone home, sucked up the pain, and had gone back to work with NOTHING for the pain.
And yet, any time I brought up how severe my pain was to Virtua's staff- I was met with cynicism, doubt, distrust and the VERY bare minimum there was to offer by way of pain medication - despite my having been in and out of the hospital without a true diagnosis - each time they would insist upon starting with the weakest medication, even though doctors claimed to have noted that they never yet helped. When I would be discharged, I'd be told to go home and take Motrin, even though my GI doctors had been clear - It's only ever taken as little as two or three doses of Advil, Tylenol and Aspirin to cause ulceration and GI bleeding.
I tried to be patient and understanding despite my pain - but I'm a person who never goes to the ER unless I'm absolutely in agony. By the time I've broken down and allowed myself to be dragged to the ER - YES - of course I've tried heating pads on my back and I've probably taken the max dose of Tylenol for the past six days. And yet, during each hospital stay, when a doctor would regrettably but eventually authorize IV morphine or dilaudid (the "big guns" of pain treatment) -the nurses would stand just outside the curtain or in the hallway chatting about what a fake I was... I heard the conversations clearly. My hearing has never been a problem. It made me embarrassed, furious and certainly didn't contribute to my getting any better. How can you trust a hospital with your care, when it's clear that they don't trust you to be honest about your condition?
Eventually, during these stays, once I was finally started on regular intravenous Dilaudid, I learned to set an alarm on my phone so I knew when I could request it again - nothing seems to anger a nurse more than asking for pain medication before it's time. Requesting pain medication at all is pretty much a guarantee that you'll be treated like a burden more often than not - unless you've got cancer, or a very clear bone protruding from your body, you can expect to be treated like a burden for being in pain.
A little tip for those new to being admitted; Even if you're dying, hospitals won't give you the pain medication the doctor has ordered unless you request it. And I don't mean when you first get there - I mean, EVERY single time, every 3, 6, 8 hours - whatever they've allowed for - if you don't ask, you won't get it. They'll automatically bring you ever other medication the doctor wants you to take, but you don't get pain relief unless you specifically ask. When you do ask, it takes some 30-90 minutes for the nurse to get around to your room, to ordering, recieving from the pharmacy, and then actually GETTING that medication to you...so if you've been given an order for "every three hours"- don't actually expect relief every three hours. If you don't ask, you'll never get it at all. If you are lucky enough to fall asleep, you can expect to wake up to severe pain because they won't bring it while you're asleep - and when you wake up in agony and you DO ask, just know it's going to be a while before it gets to you.
When you are in pain management, one of the first things they explain to you is that pain medication works MUCH better if you take it BEFORE you need it. If you wait for the worst of the pain to return before taking your next dose, it's much harder to control your pain - but as a rule - hospital don't seem to care much about what makes sense when it comes to pain and healing, and that was DEFINATELY the case at Virtua. By the time my "every three hours" order was actually in my IV, it was ALWAYS more like 4-5 hours. And if you dare require medication at shift change - add another 45 minutes to that equation.)
After learning how quickly the medication wears off and the pain would spike again, I began to document the time I was actually given all prescribed medications. I would set alarms so I wouldn't bother them before I could have it, and to remind me to ask fifteen minutes *before* my next dose was due - this would give them time to order, gather and bring the medication. I would mark off the exact time it was given so they couldn't lie to me about when I was allowed to have it again (a common issue I found among nurses)... I was clearly the only one that cared about my pain not being out of control.
I was confronted by a nurse who said "if you need to set an alarm to remind you to ask for pain meds, you must not need them" - an argument that still makes ZERO sense to me. Keeping track of when you're given medication and knowing when you can ask for it again seems like common sense. I'll get into the abuse I suffered at the hand of my admitting doctor a bit later - my experience at Virtua Hospital in Voorhees NJ in mid-May 2011.
I had already been in the hospital several days with what they THOUGHT was an endless stream of UTIs and bladder infections. They at one point told me I had MRSA (A highly contagious and incurable staph infection) in my bladder, that they ADMITTED I could have ONLY gotten from a catheter. The only catheter I'd ever had was IN THIER HOSPITAL during my c-section months earlier. It wasn't MRSA. Magically, a year later, no one could find any record of my ever having had MRSA. No one could find any test that had been performed or any culture that said I had MRSA - to the point that I was looked at like an alien when I referenced it at a subsequent ER trip. I was told I didn't have and had *never* had MRSA and that no one could find ANY record of any mention of it in my history at Virtua. It's still a mystery, but I have my theories.
I'd been in and out of the hospital, away from my newborn son, each time for 3-9 days, with this horrible shooting low back pain, doubled over from the burning, throbbing pelvic pain and the stabbing pain in my kidneys. Because of the "MRSA diagnosis" they refused me ANY visitors unless my visitors were FULLY suited in gowns and gloves and masks & surgical outfits from head to toe... except my newborn son who they wouldn't let see me AT ALL (regardless of the fact that in between each hospital stay I was at home with him and in constant contact with him.) They put me on lock down, meaning I had huge signs that everyone had to don protective gear and to remind all staff to give me the full on leper treatment - It very clearly seemed like this "lock down" and refusal to let my infant son visit me was punishment for being a "difficult" patient.
Why was I "difficult"? Because I was in pain, and my pain was being all but ignored. It was also very clear that because my diagnosis wasn't as simple as the results of a blood test or reading an x-ray, the medical staff was frustrated that I wasn't content to just stay at home and suffer. My repeated appearance with pain and nagging symptoms that wouldn't go away with antibiotics made me a burden.
That leads me back to the doctor from hell...
She'd ordered a voiding cystogram test to try to explain what they assumed were repeated antibiotic resistant UTIs (again, this was before the interstitial cystitis diagnosis). For anyone unfamiliar with the test; They put a catheter tube in your urethra, then inject and fill your bladder with dye. They record imagining of your pelvic region before, then while full, and then while your bladder is emptied (often more than once) - while you lay on a cold metal table and through the catheter, you pee out the dye.
Now, I remind you, I was in god-awful pain and the hospital was reluctant to give me anything to make me comfortable. It bears mentioning that even prior to the first time I was given any kind of narcotic, when I was rushed to the hospital with a broken jaw a few years prior, doctors were shocked to find just how little effect strong medications had - I have always been notoriously been difficult to anesthetize and local anestetics (like they use at the dentist) don't work at all or have to be given in MASSIVE quantities and still, wear off in an unbelievably short time.
It's a frustrating and fairly common issue for folks with Ehlers Danlos Syndrome - that anesthesia and opioid narcotic medications just don't work very well - but remember, I was yet to be diagnosed with EDS at that time. I'd been known to require ungodly amounts of anesthesia for my size and weight (and being a fairly slim female, it's always a shock to doctors who are stunned to give me a typical dose of general anesthesia when they find me not even mildly affected long after the "normal" patient would be out like a light). The problem carries over to pain medication, but unlike anesthetic - there's no way for them to KNOW that it's not working. I don't become impaired, drowsy - I don't slur my words or seem affected at all - and that's because I'm not. A normal "emergency" dose of strong medications like morphine and dilaudid have proven fruitless in various situations in the past - but hospital staff is weary because they hear it from addicts all the time. "The medication still isn't working" - because junkies want that high - they want more medication or a different medication. It simply doesn't matter to your average ER nurse that I just wanted to not be in horrible hellish pain, but there's a definite doubt when you're a fairly small person who requires a significantly larger dose of a controlled substance.
I had what felt like the worst UTI of my life and peeing was EXCRUTIATING. It felt like my urinary tract was SLICED and DICED inside and out, and peeing felt like what one would expect if one had passed a few dozen razor blades and broken glass, followed directly by a lovely blend of sirracha, bleach, vinegar and battery acid: It hurt like hell to pee. My urine samples had blood and PIECES OF TISSUE floating in it, so I didn't feel like my description was far off from what was actually happening.
Now, I should also explaining that I'm a horrendously SHY person when it comes to the restroom - I never even SAW the inside of a restroom through 12 years of school and 5 subsequent years in college & the police academy. Yep. Not ONE TIME. I've always had a HORRIBLE discomfort around using public restrooms and won't even pee in my own house if someone else might hear me. So you can imagine that I was already traumatized beyond belief at the mere THOUGHT of the catheter, let alone the actual test.
My thoughts: "You're going to shove a plastic tube up where I pee (which currently burns like the fire of a thousand suns), and then fill me like a water balloon (despite the fact that every time a teaspoon of urine gets to my bladder I feel like I'm gong to EXPLODE from the pressure) and then a half dozen people are going to stand around and watch me lay on a table and pee myself while it's recorded on film.... Yeah, COOL! No problem...."
So come test time, I was already mortified and sobbing when they pushed me from the room and away from my husband... but the real "fun" started when they couldn't get a catheter in me. (I forgot to mention that BEFORE THAT...my floor nurse was INFURIATED that I was crying when she came to my room to put the catheter in. She walked into my room, found me in tears, and turned around and walked out - her words were "They can do it downstairs. Clearly you're going to be difficult.")
Fast forward downstairs .... One very kind (MALE) nurse attempted to talk me through the catheter procedure, promising he's never been more gentle and tried to calm me down (seriously he held my hand before and tried his best to calm me) - but by the SEVENTH attempt to insert the catheter, I was practically hanging from the ceiling from the pain and NO ONE ON STAFF COULD GET THIS THING INTO ME. Not because I wouldn't hold still or because of anything I did... nope, they just "couldn't get it in". (My husband and I later discussed that my pain and swelling probably made it incredibly difficult but no one seemed to consider that...)
By the eight, ninth, hell, the fifteenth attempts -as each new staff member passed me off, the attempts were *anything BUT* kind & gentle like the first guy TRIED to be. More like humiliating and barbaric. I had no less than EIGHT different nurses/radiology staff and TWO doctors TRY to put a catheter in me OVER AND OVER AND OVER and when they finally, FINALLY ("sort of" succeeded- **their words**-) the pain was so astronomically violently severe and the spasming was so unbelievably intolerable, I couldn't help but be arched up off the cold metal table where I was SCREAMING that they HAD TO STOP. The radiologist told me they couldn't and that they HAD to do the procedure- but I literally could NOT stop myself from screaming from the pain. Fists clenched, arched up off the table, half naked and humiliated and sobbing and screaming- they unceremoniously pulled it out (and NOT kindly) .... but not before a VERY bitchy nurse tried to TELL/CONVINCE ME that "Catheters aren't fun but they don't hurt THAT bad!" and repeatedly demanded that I "CALM DOWN." (Shocking that this didn't work.)
(My thoughts; "Right...cause clearly I just like the attention I'm getting!? Because I'm screaming from joy? Because I WANT to do this all over again tomorrow!?")
The male nurse who had tried first held my hand as he pushed me and my bed back up to my room. I couldn't even look at him as I sobbed into a pillow. He must have apologized ninety times to both my (shocked and horrified) husband and I. "I've never not been able to get a catheter in on the first try..." he tried to explain, "I mean they aren't fun but I've never had anyone in so much pain..." He clearly was the only one who even believed how much pain I was in... he told me he'd talk to the nurse about asking for medication for the pain. Believe it or not, I'd been DUE for my "every three hour shot" BEFORE that epic hellish adventure... it was six and a half by the time the one measly half milligram of iv Dilaudid came. It goes without saying that it didn't help. I asked for the Benedryl that night, not for the itching but in a desperate attempt to help me sleep.
My husband was left to console and calm me after that massively failed attempt ... I mean, we never even GOT to the procedure part...and forget all my "faked" pain... NONE of the staff could explain why they (the clearly PERFECTLY competent staff) couldn't get the catheter in. And despite their REPEATEDLY shoving this dry hard plastic in and out of my already THROBBING & BURNING urethra... they blamed the failed procedure on my "IRRATIONAL" reaction to the catheter. NOT ONE PERSON (except that first male nurse) seemed to be bothered by how "impossible" it was to PUT THE CATHETER IN.... It was like I was some magical unicorn capable of being the first woman ever to voluntarily clamp my urethra shut on command... and, apparently I also had the power of a cloaking device (or maybe they gave up on asking medical staff and they were just asking random janitors and random hospital visitors to give the catheter a shot and THAT'S why that couldn't find my urethra... ).
We were informed that the next day I would be given "a shot of pain medication and something to calm me" before the procedure. I *wanted* general anesthesia but they assured me I had to be somewhat conscious because I had to be able to hold the dye inside me and pee when commanded (again.... suuuuure... no problem for a completely traumatized person who doesn't even go INTO public restrooms). But never mind that.
The next day, they conveniently forgot the promises they'd made and sent a single nurse to come put a catheter in and to wheel me to my procedure. Thank god my husband was there to laugh *for me*, and to INSIST they give me the Dilaudid and Ativan BEFORE the catheter. The nurse didn't seem to have read the notes on the previous days' events, nor did she seem to understand that the "silly, unnecessary and clearly overboard" medications ordered were not to appease me for the procedure but were to *proceed* the CATHETER.
So they sent her to do the catheter at 1:49pm for a 2pm test and informed me that the entire radiology department was waiting to LEAVE and I needed to "get with the program"... but even after it was explained to the nurse what I'd been through the day before, she insisted that they would give me the meds DOWNSTAIRS and that I needed to LET HER put the catheter in so we could "get on with it."
Needless to say, day two was a total strike out and the doctor was INFURIATED that I'd "refused" the test. I'm not kidding, that's the terminology she used. That's when my husband *had* to leave to deal with the work he'd been missing all week and the lovely cardiologist who had been my admitting doctor, came to "discuss" her issues with me.
(In her words); She started off by telling me that I must REALLY be enjoying my time there since I was REFUSING to cooperate and that by putting off the tests to show them "what's wrong with me" I was
"being a complete bitch" and "ridiculously high maintenance" and that she knew EXACTLY WHY.
She then went on to tell me that she "knew about my little alarms" and launched into an angry in-my-face rant about how I wasn't even a GOOD liar or fake, and that "NO ONE" comes into a hospital with a bladder infection and then has 'excruciating' pain in their hips, collarbone and shoulder." She demanded that I "at least come up with 'better lies' when begging for 'ridiculously strong' medications like Dilaudid for "a uti" because "normal people" who "aren't addicts" don't even take ADVIL for UTI pain and "who the hell did I think I was fooling?" She went on to explain that **NO ONE** has "mysteriously worsening joint pain" when they've been admitted for "just a uti". (By this point I was silent - tears building in my eyes, my mouth hanging open, completely disbelieving that I was actually being screamed at by a doctor. )
Alone in that room where I'm sure she felt that no one would believe me when I complained about it later - she insulted me, cursed at me, belittled me and *repeatedly* accused me of being a drug addict just there for a "fix". She got less than a foot from my face where she told me in NO UNCERTAIN TERMS that she "wasn't buying it", that she "wasn't playing my game anymore" and that my "free drugs" were "ending forever" after this test proved my urine wasn't backing up into my bladder and that I didn't even have a real kidney infection.
Then she opened the door to my room, straightened out her coat, smoothed down her hair and with one final threat that I "WOULD cut my 'shit' and cooperate" with the test the next day- she left my hospital room as if nothing had happened. I was in complete shock.
(***IMPORTANT SIDE-NOTE: About ten months after this happened, a black box warning was added to all flouroquinelone antibiotics because they were determined to cause permanent damage and spontaneous tendon rupture in people with arthritis & other joint conditions. I was diagnosed with Ehlers Danlos Syndrome about a year AFTER this nightmare in the hospital- EDS causes all my joints to sublux and dislocate 24/7. Virtua had pumped me full of Levoquin & Ciprofloxin more than THIRTEEN full two & three week (IV) courses despite my CONSTANT reports of EXCRUTIATING and worsening/spreading joint pain throughout every treatment . We didn't know at the time that I had EDS or that the antibiotics were dangerous but CLEARLY no one CARED nor made ANY attempt to take a detailed medical history or to explain or even BELIEVE my joint pain was real during the ongoing antibiotic treatments. I spent more than THIRTY WEEKS writhing in pain *caused* by the antibiotics. An orthopedist later theorized that much of my PERMANANT low back and hip damage were a direct result of the HUGE courses of those repeated antibiotics. The pain that it caused has never fully gone away.***).
Anyway, after berating me about what a liar & terrible fake I was, I called my husband at work and begged him to come back to protect me- isn't that nice? Reports to the patient advocate and later to hospital administration fell on completely deaf ears. I was desperate for answers and to stop being sick which is the only reason I had continued to go back there- I didn't want to start all over at a new place where they would start from scratch, but I was TRAUMATIZED and to this day, I've never received so much as an apology from Virtua.
On the third day of attempting the voiding cystogram, my husband stood by- they first gave me the small dose of pain medication (which only barely worked for me but was certainly better than nothing), then the Ativan (which notoriously affects my memory and makes me "out of it")- but again they wanted to give me the shot and immediately try to put the catheter in and whisk me off to the test! My husband was the one who fought with them to wait at LEAST a half an hour for the medication to begin to work so that I'd be able to be more relaxed.
I was told after the fact that they still had a great deal of trouble with the catheter that day, but thanks to the Ativan I have no memory of the test or the pain or any of that third day thank god.
But I have never forgotten the hell they put me through, the HORRIBLE treatment I endured, the god-awful pain I was in and to this day I have medical PTSD and a strong distrust for all medical professionals - not to mention that I live with the PERMINANT damage to my joints from the Levoquin & Ciprofloxin.
I will never forgive that HORRIBLE "doctor" who took am oath to "do no harm" and how she treated me- I doubt she remembers me, but I'll never forget her face OR her insults. I'm probably just one of a thousand patients she's treated like garbage because she didn't believe their pain, and that may be the saddest part of the entire thing.
One of the worst, most hellish experiences of my life probably wasn't even memorable enough for her to recall a few years later. I wonder if she knows about the black box warning on those antibiotics or if she's still working there & blaming horribly ill people for their own pain, refusing to believe that anyone in a hospital bed is actually sick & suffering. I really hope not.
This is the type of horrible treatment people with Ehlers-Danlos Syndrome come to EXPECT from doctors and hospitals. This is the kind of treatment people with chronic pain deal with MORE OFTEN THAN NOT during our journey to a diagnosis. That should shock, embarrass, disgust and INFURIATE anyone in the medical profession... but sadly, I'm sure there are MORE than a few who would read this and immediately start to explain "but we get so many junkies who come in just to get pain meds..." as if it's ACCEPTABLE to treat EVERYONE like garbage because SOME people try to play the system. As if it's okay to assume that everyone is a fake and a liar because their symptoms don't make sense, or their pain won't go away or because medication doesn't work on Patient A the way that it does for Patient B.... How sad and shocking and horrible is it that this is the system we're supposed to trust with our lives? I was dumb enough to believe that because I'd gone to a large, well-funded and brand new area hospital, I would be treated for the illness that was making my life miserable - but in the end the hospital and its staff did FAR more damage to me than the illness ever had.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.