Let me take you back to Virtua hospital in Voorhees, circa May 2011.
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.
What seems like forever ago, back before I got so sick, circa 2010, life was very different. Back then, I was living in Florida & 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.
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?
Repeated medical abuse at the hands of Virtua hospital forever destroyed my health and life.
So let's talk about this, because it's important. I hope that someone who reads this working in the medical field will learn from what I've been through, and I hope other patients will use this story to be aware of what can and DOES happen all the time. I hope it will make people more aware of what chronic pain patients go through when dealing with hospitals and medical professionals. Because at the end of the day - I should have sued. I wish I would have known the extent of the damage because you only have two years in NJ - even if they destroy your life and health - you only get two years to figure out the damage and sue.
In the end, their utter disregard for my health, and their refusal to treat me with respect and listen to my symptoms seriously contributed to my current condition - which can only be described as "completely and permanently disabled." Their outright medical abuse left me with PTSD.
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.
And so Virtua 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.
How Pain Medication is Handled when You're Hospitalized
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 at one point by a nurse who said "If you need to set an alarm to wake you up and remind you to ask for pain meds, then you must not need them" - an argument that still makes ZERO sense. Keeping track of when you're given ANY and all medications while you're in the hospital is CRUCIALLY important and incredibly responsible. If you've been admitted, and you're in pain, and you are on a regular order of pain medication, then knowing when you are even allowed to ask for your next dose seems like common sense, doesn't it? It did to me!
My experiences at Virtua Hospital in Voorhees NJ PRIOR to 2011 were not good.
To be clear- before the ultimate incident that I'm going to tell you about had happened - I had already been in and out of Virtua quite a bit. I had already been in and out of their hospital for several days and weeks at a time, first with a staph infection and a recurrent case of Epstein-Bar. While there, I got a horrible infection from an improperly handled IV site and had awful cellulitis that they had to keep me for a week to treat. After that, I was back and forth with what they THOUGHT was an endless stream of UTIs and bladder infections.
At one one point they told me I had MRSA (A highly contagious and incurable staph infection) -they said the MRSA was in my bladder, and then they ADMITTED I could have ONLY gotten it there from a catheter. The only catheter I'd ever had was IN THEIR 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.
For months, I was admitted again and again - 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. I was sick of being treated like a leper or as if I was somehow in control of the infection that kept coming back and all the symptoms.
Virtua Hospital (Voorhees location) June 2011 - The Doctor from Hell
So the June 2011 incident was where things finally hit a head and became infuriating. At this point, I'd been in and out of the hospital, away from my newborn son for about a week. I was angry to have been admitted YET AGAIN and to still have no answers as to why this was happening.
It became even worse when I was admitted under a female cardiologist who seemed to have ZERO interest in my case, zero tolerance for my complaints and she had NO interest in treating my pain- that much she made clear right from the beginning. I told her that I just wanted the bladder issues TREATED so that I wouldn't BE in pain. If they were allowed to put a great big RED D on your forehead for DIFFICULT PATIENT - I would absolutely have been given one on this particular stay at Virtua.
So why was it deemed that I was being "difficult"? Simple: Because I was in pain, and my pain was being all but ignored and I wasn't happy about it. It was also very clear that because my diagnosis wasn't easy - it wasn't as simple as reading the results of a blood test or pointing to the broken bone on an x-ray, and so the medical staff was frustrated. They didn't seem to understand why I kept coming back - why was I not content to just stay at home and suffer? My repeated appearance, coupled with the fact that every time I showed up I was in pain and it was the fact that these nagging symptoms just wouldn't go away no matter what they threw at the infection - it was the fact that even with pain meds and with antibiotics, I was in pain and that made me a burden.
That leads me back to the doctor from hell...
Two days into my hospitalization, the cardiologist who was my attending (I can't remember her name unfortunately) -She ordered a test called a voiding cystogram. She said the test was 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. Sounds fun, huh?
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 anesthetics (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.
So I had what felt like the worst UTI of my life and peeing was EXCRUCIATING. It felt like my urinary tract was SLICED and DICED inside and out, and peeing felt similar to what one would expect if one had passed a few dozen razor blades and broken glass, followed directly by a lovely blend of sriracha, 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. Not good.
(Side Note: 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...."
Their First Attempt at the Voiding Cystogram
Things ALREADY start out badly when my floor nurse shows up and she's INFURIATED that I'm crying when she came to my room to put the catheter in. She walked into my room, found me sitting there silently in tears, and she turned around on her heels and walked out - Her words were "They can do it downstairs. Clearly you're going to be difficult." So.. yeah, awesome.
The transport person shows up moments later -it's time for the test and I was scared & mortified and quietly 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.
Downstairs ... A 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 - and she's yelling this practically in my face- "CALM DOWN! Just CALM DOWN!" (Shocking that this method 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 then held my hand as he pushed my bed back up to my room. It was obvious he felt awful for me. I couldn't even look at him as I sobbed quietly into a pillow. He must have apologized ninety times to both my (shocked and horrified) husband and to me.
"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.
So part of the problem with the way things had happened that day - we decided- was because I'd been DUE for my "every three hour shot" BEFORE that epic hellish adventure... but because of shift change and requests taking forever and busy / slow nurses... We were at six and a half hours since my last medication by the time that one measly half milligram of iv Dilaudid came. It goes without saying that it didn't actually help.
My husband was left to console and calm me after that massively failed attempt. We never even GOT to the procedure part. Even if we completely ignore and forget all their bullshit about all the "fake" pain they caused... None of the staff could explain why the clearly PERFECT & competent staff couldn't seem to figure out how to get the catheter in me. 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... Maybe THAT'S why they couldn't seem to find my urethra...
The 2nd Attempt at the Voiding Cystogram
We were informed that the next day I would be given "a shot of pain medication and something to calm me" before they again tried to do this procedure. I *wanted* them to just do 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. I should absolutely be able to handle that... But never mind my discomfort and embarrassment.)
The next day, they conveniently COMPLETELY ignored (AKA "Forgot") all the promises they'd made and they again 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 they make an attempt at this catheter. The nurse didn't seem to have read the notes on the previous days' events, nor did she seem to understand why we were demanding that these "silly, unnecessary and clearly overboard" medications were to be ordered - I don't care if she didn't know why the hospital was just trying to appease me for the procedure but we were NOT going to *proceed* to the CATHETER until they figured it out.
So they sent her to do the catheter at 1:49pm for a scheduled 2pm test and she informed me that the entire radiology department was waiting to LEAVE and I needed to "get with the program"... 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 things." They are demanding my cooperation, and it's ridiculous.
So day two was a total strike out.
When the Second Attempt nurse gets a hold of my attending - the bitchy cardiologist was INFURIATED. She decided that I'd "refused" to cooperate to do this test. I'm not kidding.
I'd been in the hospital for several days by this point - unfortunately before the doctor showed up, my husband finally *had* to leave to go deal with the work he'd been missing all week.
And that's when the lovely cardiologist (My admitting/attending doctor) came to "discuss" her issues with me. The door swings open and bangs into the wall and this REALLY angry doctor comes storming into my room (the evening of the second failed attempt). I'm not kidding - that's the EXACT terminology she used. "You REFUSED to cooperate with this test and this is ridiculous."
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 that should show them "what's wrong with me" I was
"being a complete bitch" and "ridiculously high maintenance" and that she knew EXACTLY WHY I was doing it.
Mind you - I was trying to nap when she came storming in. My jaw is on the floor when this "doctor" comes in and starts yelling.
She went on and on - telling me that she "knew all about my little alarms" and she launched into an angry in-my-face rant about how I wasn't even a GOOD liar or a GOOD faker, and she tells me in NO uncertain terms that "NO ONE" comes into a hospital with a bladder infection and then suddenly develops 'excruciating' pain in their hips, collarbone and shoulder." (Except... that's EXACTLY what had happened... I guess I shouldn't have told them about the concerning pain that was showing up all over my body?)
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".
While the doctor is yelling - I was silent - I was shocked and stunned and I couldn't believe it was actually happening. I'm not at ALL a crier, but tears were welling up 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.
An Important Note about Flouroquinelone Antobiotics (Ciprofloxin, Levoquin, etc)
(***IMPORTANT SIDE-NOTE: About ten months after this happened, the FDA issued a black box warning about the antibiotics I as on. The warning was added to all flouroquinelone antibiotics because the entire class of medications were determined to be EXTREMELY dangerous because it can cause spontaneous tendon rupture in people with arthritis & other conditions that cause joint inflammation.
I was not diagnosed with Ehlers Danlos Syndrome until about a year AFTER this nightmare occurred. EDS causes all my joints to sublux and dislocate 24/7. Because Virtua had pumped me full of Levoquin & Ciprofloxin over and over again. I was subjected to more than THIRTEEN full two & three week (IV) courses despite my CONSTANT reports of SEVERE, EXCRUCIATING pain that spread from one or two joints until ALL my joints were affected by BURNING and STABBING pain. This occurred throughout every treatment .
We didn't know at the time that I had EDS or that these antibiotics were dangerous but CLEARLY no one made ANY attempt to take a detailed medical history or to explain why I was having such a painful reaction to the antibiotics. Worse - No one BELIEVED my joint pain was real during the ongoing antibiotic treatments -despite my reporting the symptoms EVERY time. I spent more than THIRTY WEEKS writhing in excruciating untreated pain *caused* by the damage from these antibiotics. My orthopedist later theorized that much of my PERMANENT low back and hip damage were a direct result of the HUGE courses of those repeated antibiotics. The pain that it caused has never 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.
The Third Attempt at the Voiding Cystogram
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 PERMANENT 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 these are the "professionals" that 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 instead, I was judged, ignored and in the end, the hospital and its staff did FAR more damage to me than the illness ever had. I still have serious trust issues with all of the medical staff that I interact with. I did report the situation to the Patient Advocate and the hospital's board, but nothing ever came of it. Infuriating, huh?
I wish there was a way to let people know "you should look for all these weird symptoms" and "If you're finding that all these strange things are happening to you - you MIGHT have Ehlers-Danlos Syndrome" - while the EDNF site is really good, much of the symptoms listed are just medical terms,and not necessarily things people can relate to.
I know there's a lot of things MANY of us have, but it doesn't seem as if doctors have 110% connected it to our EDS.... like Keratosis pilaris (red bumps on your skin on your arms and legs most often, which can appear purple when you're cold - it's common among EDSers). I'm trying to catalog all my problems from head to toe...I hope it will help my doctors (I'm planning to give it to them), plus, I'm hoping you guys reading who suffer from EDS can help do the same, so we can make a generalized "If you're noticing that you have a large number of these problems, you might want to talk to a geneticist."
Here are the things I've come up with from a thorough evaluation - but this list isn't complete and I'm sure I'll be adding things as I remember them.
My EDS related symptoms - from head to toe - starting with things noticed when I was a baby:
As a Baby:
-I was born with hips that seemed to have no natural stop - they were extremely floppy and could bend in every direction. By the time I could stand, i could and would often rotate my legs inward almost 360 degrees. I can STILL do this.
-I was very ahead of my age physically. I never needed my head/neck supported as an infant bc i could hold it up myself. - as a baby, I had incredible strength and could hold my head up and do push ups. I stood at four and a half months, pulling myself up, and then walked at barely over five months.
-(I've noticed a large number of these things in my son who is now four - he was incredibly ahead- crawling from the foot of our bed to the head at only 13 weeks - and the day he was born, he could lift his entire top-half into a push-up position and look ALL over the room, holding himself up for minutes. It freaked out the OBGYN so badly, he at first thought the baby he was seeing in our room WASN'T the one I'd just given birth to downstairs. He called in over a dozen people to witness the super-human baby whose head/neck and arms were SO strong.
-I was always a very advanced learner. Spoke in full sentences before 18 month, was reading full books by three,
and chaptered adult books by four and a half. I was offered to skip multiple grades in school (but passed to stay with my friends).
-I was VERY clumsy as a kid, with horribly toed-in walking, I tripped over my own feet often and they tried to put bar-shoes on me, but had to remove them because I walked so young.
-As a child, I always felt like my joints were SUPER loose, and I always felt like just sitting up /standing in line, etc was EXHAUSTING. This has only gotten much worse as I've gotten older.
Head / Hair / Brain:
-I'm a natural red-head with fine skin and freckles, which seems to be pretty common in EDS type-3. I've seen a LOT of red-heads.
-Accelerated Hair growth (my head-hair grows nearly 1.5" a month)
-Thin, fine, limp hair with a permanent part no matter what I do - my hair won't hold a perm, and resists dye. (This could be because of my red hair)
-Brain-fog, short-term memory problems with functional things- like I can't remember if I did something, or WHEN I did something. It's like my body doesn't remember what it's done. HOWEVER...
-I have incredible long-term memory - I can even remember many things that happened when I was just 8 months old in detail.
- I have an Eidetic memory for things I read and see. I can flip through a magazine, and then tell you what page the razor ad was on, or almost repeat an entire article word for word.
(For example: No one has EVER beat me at that bar-computer game where an image flashes, the faster you touch the screen, the faster the picture goes away, and then it asks you a bunch of questions about what you just saw - like how many spoons were on the table, or how many people were wearing sunglasses - to date, I've never gotten a single question wrong because my mind forms a complete photo almost instantly of what I saw, and I can recall it in incredible detail)
- I read incredibly fast and can type over 165 wpm
-ADHD symptoms that started in middle-school with impulse control issues, inability to sit still (which i still think was due to pain/discomfort/always looking for a more comfortable position - not necessarily hyperactivity)
-Oddly, I've almost never had a head-ache in my life, save a few times when I was really sick and had sinus pressure. (I realize how lucky I am).
-I have keratosis pilaris on my upper arms, thighs (above my knees on both upper legs) and along my jaw line. It causes the pores to get plugged up and red bumps. On my face, it causes bumps almost like acne but it's clearly not.
-I have a horrible time with picking, especially at my face because I cant stand that just washing/exfoliating doesnt clear it up, so I often pick, poke, squeeze, etc. The doctor can tell me all he wants that it makes it worse, but I cant stand having anything IN my skin.
-I have VERY fine blonde body-hair that's totally unnoticeable and almost invisible. As I hit my 30's, this fine peach fuzz has shown up along my jawline, my upper lip, and below and around my mouth - where the plugged skin is worse. Even though it's all but invisible, I've found that shaving it can help exfoliate the skin and does help.
-I soak in Epsom salts and exfoliate with apricot-shell and loofah oatmeal soaps which help reduce the keratosis pilaris.
-An illumask from Walmart REALLY helps with my skin on my face, to reduce redness, and Lotrimen (not because it's a fungus, but because the medication helps to break down the keratin plugs that form under the skin), and breaks down many of the painful lumps before they begin. I HIGHLY recommend this combination!
- I've never needed glasses, until my 30's - because my night vision and depth perception have become awful, very rapidly.
- I am red/green deficient from a head injury that happened when I was playing soccer at 13.
-I have floating spots that started when I was 31. Nothing is wrong with my eyes and doctors have yet to get an answer to why. It gets worse and then goes back to a minor inconvenience, but it never totally goes away. The spots seem to remain in the same spots, though sometimes they get larger and return to a small size. These floaters often make me think I'm seeing a bug or something in my vision, takes a second to remember it's just my eyes.
Anesthetics / Surgery Issues:
- Almost no general anesthesia works properly - it either wears off really fast or doesn't knock me out even in large doses. This has been observed by over a dozen different doctors.
- I've woken up during various surgeries, and my epidural wore off in less than 20 minutes - they barely had time to finish my tubal ligation, and I was fully able to move my legs before getting to the recovery room.
-Local anesthetics don't work at all- for dental procedures, I've had hundreds of shots, which sometimes numb near my eyeballs and parts of my upper face, but don't do anything for my mouth/teeth. I can feel almost all dental work if I'm awake.
-Pain medication does not work normally either, I can have abnormally large doses that someone my size shouldn't metabolize so quickly or be able to handle without seeming "high" or out of it. No one in my life except my family would have ANY clue that I take 100 mg extended release morphine every 12 hrs and 4 mg dilaudid for breakthrough pain because it doesn't affect my behavior or coordination at all. Even my eyes don't dilate severely like most people's do.
Mouth / Jaw / Teeth:
-Jaw locking problems - pops if I open wide enough. TMJ symptoms since I was a young teen.
-No dental anesthetics work or last. I've had HUNDREDS of shots of varying local anesthetics and I can still feel everything.
-Dental pain seems to affect me abnormally badly to the average person.
-I used to get a lot of mouth ulcers (NOT cold sores - little round open wounds inside my mouth, on my inner cheek, inside my lips, on the gums, tongue, under my tongue. Adding vitamin C to my diet seems to have worked to reduce these. My mom and son have the same problem.)
-Very high pallet
-Very crowded teeth with no room for all my teeth - had to have some pulled. Had braces for a few years because my teeth were crossing, and they moved immediately as soon as my retainer broke. Even though I now have some missing teeth - the teeth crowd together.
-My baby teeth never fell out and had to be pulled. I got my first loose tooth at NINE. Two of my baby teeth lasted until I was twenty four.
-I was missing eight adult teeth - one of my wisdom teeth and several of my other teeth both front and molars simply didn't exist.
- My jaw was broken when my wisdom teeth were pulled because the doctor must have not realized that my jaw would just dislocate when he opened my mouth far... my guess is that it easily dislocated from manual manipulation, and he just opened it too far and my jaw bone cracked length-wise. It was a LONG healing process, caused huge swelling and eight weeks of being unable to open my mouth. We had to pry my teeth open with a spoon to put pain medication in - no joke.
-While I was pregnant, my teeth which had NEVER had a cavity my entire life, suddenly began to crumble. Since then (I'm 33 now) - I've lost seven teeth, have two that are beyond repair, and have about a dozen untreated cavities. Fillings seem to fall out, and while root canals do kill the nerve- the teeth can't seem to last after, and regardless of caps, crowns, etc - every tooth I've had a root canal in, has completely fallen apart.
- Since this list was made, I had all of my molars pulled by an oral surgeon. The only teeth I have left are thirteen of my front teeth and those are breaking and will need to be pulled as well. :-(
Thyroid / Fatigue / Insomnia
My thyroid was diagnosed as slightly low functioning at 29 while I was pregnant, but not low enough for medication. By 31 I was low enough to need medication.
-The thyroid issues cause horrible fatigue - even when I take my medication properly, I still have issues with fatigue that's impossible to counter-act without medication (I take 30 mg Vyvanse which helps with memory-fog, short term memory, impulse control AND helps give me the energy to stay awake 12-16 hrs a day)
-I have waves of insomnia that I've yet to solve. I will not sleep normally for weeks, and then be unable to do anything BUT sleep for days. Vyvanse helps immensely but has severe side effects for the first 7-10 days on it and is VERY expensive.)
- Thyroid issues can and have affected my ability to have a second child, and we are now being treated for unexplained fertility issues five years after the birth of my son.
Neck / Throat:
- I have problems swallowing, and at times get a lump in my throat that I can't swallow. It lasts for hours, days, sometimes weeks. Doctors tell me its GERD but I've got no other symptoms of heartburn. Simply a lump that shows up for no reason and wont go away.
- I was finally diagnosed with an incompetent esophageal sphincter during an endoscopy recently - so apparently some stomach acid IS corroding my throat.
Spine / Back:
-Horrible posture - I can't sit up straight, feet on the floor, back straight for more than 40 seconds. I slump, I put my feet up on everything, I sit with my feet tucked under me or up on the dash - on the computer, I sit like a pretzel - it's almost absurd the positions I will get into to get "comfortable" - it's like my body naturally looks to rest on itself - even when I was a police officer, at the range, I'd hold my elbows against my belly to shoot, because holding my gun up was EXHAUSTING.
-I have horrible muscle spasms and knots in my back. Myofasical release massage helps IMMENSELY but only lasts 2-3 days or less because the spasms come right back. It's also really expensive, so I'm lucky if I can get a good massage once a month, sometimes less.
-To date, we've tried nearly every muscle relaxer that exists and none seem to work, OR they just knock me out for 16-20 hours which isn't practical. I'm not currently taking any muscle relaxers for this reason. I now have a prescription card in NJ for medical marijuana (as of July 2015) for muscle spasms, and it does help quite a bit.
-I have horrible ongoing low-back and tail-bone pain. When I was a police officer, I would shove my metal ticket book behind my low back as lumbar support in my car which helped immensely. As a child, I would sit in weird positions to avoid back pain. As an adult, l spend a LOT of time unable to get comfortable - I used to sleep curled up, now I sleep on my back, but I've yet to find a comfortable bed/surface or way to sleep that reduces my pain. A pillow between my knees DOES help. I have since gotten several Yogibo chairs and pillows, which help a lot - I even sleep in my large Yogobi couch from time to time!
-MRIs have to be upright because I'm terrible claustrophobic even with meds - they show some arthritic change but arent overly helpful because nothing is actively dislocated while the MRI is being done, so it doesnt show a whole lot. The first two orthopedists completely dismissed all my pain and problems because my MRI's didn't show any bulging disks, etc.
-I was diagnosed with crohns in summer 2008 while i was hospitalized on and off for seven weeks where I lived at the time. I still have specific foods, meds, etc that I avoid for flareups although some things (like fried foods) are just ALWAYS a no-no, no matter what.
-I've been off medication since my pregnancy in 2010 - and have been in remission since around mid 2009 though I still have have some IBS type symptoms occasionally.
-I cant take anti-inflammatories or NSAIDS as well other typical mild pain relievers. (the entire list is advil, tylenol, aspirin and naproxin) because they cause horrible GI pain, cramping and bleeding, and I'm pretty sure that's what caused or at least triggered the crohns to almost kill me in 2007.
- I have tried EVERY exclusion diet, and skipping gluten, dairy, citrus, meat, carbs, sugars, carbonation, etc etc etc doesn't work. I have literally done each one, for months, with NO results - none of these benefit anything.
-I have regular colonoscopies to be sure the Crohns is still in remission - the only problem is that
- I had severe GI slowdown and even a blockage that required surgery while on oxycodone, so I got off of it - it did help with the chronic pain, but wasn't worth the awful effects on my GI. During the time on 15mg oxycodone, I gained almost 60 lbs, destroyed my appetite and sense of taste, and was constantly battling digestive problems (related to stasis).
- I had one pregnancy and it was fairly normal in 2010.
- During my pregnancy, I was off all medication (I wasn't yet on pain medication as I was diagnosed with and my EDS got much worse at the end of, and after my pregnancy). My GI slowed down naturally, so the pregnancy almost seemed to "solve" all the problems with my crohns even though I'd stopped medications (I had done remicade treatments when first diagnosed, and later was on Asacol and Dicyclomine/Bentyl).
- I have horrible cramps that seem to be worse when my thyroid works properly, but I do have very short periods and very irregular cycles that have proven impossible to track.
- I was diagnosed with interstitial cystitis and have chronic and constant problems that feel like UTIs. I did have a problem with recurrent kidney infections which were solved with heavy IV antibiotic use - but the iv antibiotics caused permanent tendon damage (levoquin and cipro - at the time we didn't know that with EDS, I shouldn't be taking them).
-The cystitis causes chronic UTI symptoms, and I take AZO about fifteen days a month to help reduce the pain/burning/urgency. It's especially bad during that time of the month and is a pain in the ass in relation to my marriage for obvious reasons (though my husband is incredibly understanding). Sometimes I take AZO as a preventative because I *know* the symptoms are coming back.
-I have had awful problems with urgency, maybe I just wait too long to actually get up to go to the bathroom because of the chronic pain, but once I'm en route, its basically an emergency.
- I tried to do both the bladder installations (where they put the medication right into your bladder) plus take the oral meds (elmiron and elavil),but the oral medication made me violently vomit and no adjustments help- I absolutely can't take them. The bladder installations don't last long enough to be worth the inconvenience, humiliation and constant risk of infection, plus, they leave me with the same pain and burning and I still have to take AZO. So I just live on AZO and I'm hoping it's not killing me.
I THINK that's about it.... still adding to this as I think about more things...
Please try to be a good friend to the person you know who battles chronic illness
The following are some suggestions on ways that you can be a good friend to someone who is struggling or coping with adjusting to life with a disability. Your friendship is more important now than ever. Being chronically ill can make you feel isolated, depressed and some people with severe chronic pain consider suicide. You never know how much of an impact even the smallest gestures can make when you are doing something nice for someone who is dealing with the difficulty of living with chronic illness. Your words and actions can provide everything from emotional support to reduction of symptoms - just by being a good friend.
1) Even if you know there's a good chance they can't make it, please remember to invite the chronically ill friend in your life to events, parties, and one-one-one outings.
Everything from large events and parties, to the occasional social outing for coffee. When a person never knows how they are going to feel from day to day, it can be common to cancel plans at the last minute or turn down lots of offers, and sadly, as a result, many friends stop inviting the friend to do anything at all. Unlike a flakey friend who always cancels last minute or blows you off when a better offer comes along - your chronically ill friend probably doesn't WANT to cancel plans, but has to for one reason or another. Please try not to take it personally when someone with chronic illness has to cancel - and please don't use it as an excuse to stop inviting them at all - it's very easy for friends to just stop inviting you after you've had to turn down or back out of plans. Please try to remember that just getting showered, dressed and leaving the house takes a GREAT deal of effort - so try not to call us up last minute and then get frustrated when it takes an hour or more for us to get ourselves ready. Just please don't stop inviting us to things- even if we've turned you down multiple times in the past. Cultivating and keeping friends is difficult when you're battling chronic illness- a little patience and understanding goes a LONG way.
2) Please try to set aside special time to invite us to do something that you know we CAN do.
Ask if they mind if you drop in just to chat, or invite us to come to your house (for a change of scenery) just to have a cup of hot chocolate. Invite us to go get our nails done together, or another passive activity that doesn't involve tons of movement, standing, walking,etc. While there are some days that we could handle a trip to the mall or even an amusement park - please try to invite us to do things we're almost ALWAYS capable of doing. It would mean VERY much to us that you care enough to plan something special - it shows that you care about us as a person and value our friendship.
3) Feel free to ask questions about our illness or current symptoms - talking about it often helps.
We don't want to feel like Debbie-Downer by bringing up our current problems or the struggles we've been facing, but when you ask, it shows that you CARE and you aren't afraid to be a friend with everything isn't all sunshine and flowers. The best thing you can do is to be a good listener WITHOUT trying to offer us medical advice. Please know that while you mean well - we have a whole team of specialist doctors, many of us regularly see a chiropractor, the health food store and a plethora of other professionals, and we've heard ALL the suggestions before. And whatever you do - try not to bring up the suggestion that "loosing weight might help you feel better" - those of us dealing with chronic illness are well aware that extra weight doesn't help, but most of us are also making a valiant effort not to continue to gain weight or hold onto those extra pounds - sometimes the medications we take have a side effect of weight gain, and there's simply nothing more we can do. Please remember that while we may be very frustrated about a particular health issue at hand, most of us would rather talk about our hobbies and interests, our families and what's going on in the world. If we're wearing a brace or on crutches, feel free to ask "How is your wrist doing?" - we like to know that you care and I promise, we won't go into a tremendously long timeline of our recent ailments just because you acknowledge something that's obviously a current issue.
4) Please try NOT to push us to participate in things you KNOW we can't do - if your circle of friends is going sky-diving, you can certainly bring up the topic, but don't try to push us to do things that we don't feel up to doing.On this same note - if we've politely declined because we aren't physically up to tagging along, try to find a way to include us after the fact. You can always bring pictures from the crazy drunken midnight ghost-tour or that sky-diving trip and tell us all about how it went -it will help us feel a little less left-out. Or, if we can't participate in something incredibly phsyical-maybe we'd like to come along to take pictures. You can sometimes find a way to include us without putting us at risk for further injury.
5) Remember that small gestures go a LONG way - Maybe we haven't felt up to leaving the house in weeks, but you could always offer to come over with a home-cooked meal (or take-out) and a red-box rental to have a night-in. Remember, during those long periods of time when we are home-bound - it gets incredibly boring and lonely to be stuck at home all the time - Any offer to spend time with us means so much, even if it's just dropping by and insisting that we can stay in bed in our jammies and you're content to just "hang out". True friends don't need to "DO" things together all the time - sometimes just having another person to talk to (rather than text messaging or chatting online) is enough to bring us out of a really bad mood.
6) If your friend is going through a REALLY rough time (symptoms that are being terribly persistent - chronic pain that's become really bad, or depression / anxiety resulting from their inability to do much of anything at that point and time) - remember that even the SMALLEST gesture counts; A quick phone call to ask how she's feeling, a Facebook message on her wall just to let her know you miss her, a text-message chat checking in on her - it's a little thing that can go a LONG way. Emotional boosts are KNOWN to translate into improved physical symptoms - so remember that even the smallest show of love and support can make a world of difference to a friend who is trapped inside a body that isn't cooperating.
7) Bring a gift - it doesn't have to be anything expensive or elaborate: a couple of home-baked brownies, a container of your mom's home-made chicken noodle soup, a pretty candle or a good book you've already read three times- everyone loves a gift, and make sure your friend knows that you don't expect anything in return.
8) Bring them food- it becomes really easy to live off of microwave meals or skip entire days when you're not up to standing in the kitchen and cooking. If you've made a big dinner and have leftovers- why not offer to stop by your sick friend's house with a single-portion so they can re-heat it for lunch when no one is home and they aren't up to making something for them-self!
9) Just outright ask: Is there anything I can do for you today that would make your life a little easier?
You could offer to walk their dog or to take their kid(s) to the playground for a few hours. You can drop by with a small bunch of flowers, or ask if you can throw a load of laundry in the wash for your
friend. Maybe that sink full of dishes could be put in the dishwasher or you could offer to carry their trash outside to the can?
It doesn't have to be a GRAND gesture-and no one is suggesting you offer yourself up for a full day of house-cleaning (although if your friend has recently had surgery, this could be an AWESOME group project for your circle of friends to offer!) - sometimes your sick friend is internally stressing out about the fact that it's trash night and she's simply not up to carrying that kitchen trash bag to the curb... so your offer to help with such a small chore (Even on your way out - "Hey, I'm heading out now, would you like me to take your kitchen trash bag out with me, or did anyone bring your mail in today?") -these types of offers can be so minor, but yet such a big deal to someone who is having trouble staying on top of their household chores. You just have no idea how such a simple offer can really ease the mind of someone who is feeling trapped on the couch by unrelenting symptoms.
10) My last suggestion is my favorite - because there's not a single person I can think of who wouldn't appreciate this type of gesture. It doesn't have to cost you anything, but it can make a world of difference to your friend:
Pack a mobile "wellness kit" - include a snack you know your friend enjoys (and can eat) - take along a movie (preferably something funny or that you've already seen a million times and know you'll both enjoy) and have an old-school "sleepover" style get together. Bring a hairbrush, and nail polish - give your friend a mini-manicure or paint her nails with cute designs. Do you give a good back or neck rub? If not- bring along a microwave-style heating pad, and offer it up for the persons neck and shoulders. You could offer to run a brush through your friend's hair and try a new style - a simple braid or even a pony tail or bun can make someone who is sick and really down feel like a whole new person. And who doesn't love the sensation of having someone else play with your hair? This type of mini-makeover can have lasting affects - not only do you let your friend know that you care, by planning something that doesn't require her to get up and do much of anything, but you're spending quality time, and when you leave, your friend might have really cute nails and a brain in her hair - leaving her feeling much better than she did when you arrived. There's not a person on this planet who doesn't enjoy the tingly sensation of having someone else brush their hair - a soft bristle brush is best. Or bring along a nice-scented hand lotion and give them a hand massage - this type of personal attention shows that you truly care, that you want to make them feel special and loved, and doesn't require any effort but for your sick friend to kick-back, relax and enjoy the special attention.
An old-school style sleepover- where you braid her hair, paint her fingernails and watch Clue for the 300th time can be JUST what the doctor ordered.
Do you have suggestions for what a friend could do for you to make you feel better when you're feeling bad, or have you done something special for a sick friend lately? Please share in the comments - we'd love to hear your ideas!
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.