Why does it matter what we call it? Isn't "needing" pain medication the same thing no matter what?
A blogger writes about their concerns regarding medications that their doctor prescribed...
A husband worries that his wife is taking too many prescription pills...
A sober recovering addict gets injured and is concerned that treatment could affect his sobriety...
A friend is afraid of taking pain medication after surgery...
Dependence... or addiction?
These two terms, often used interchangably by everyone and anyone, are EXTREMELY different.
They mean two incredibly different things- and yet from doctors to patients, concerned loved ones to clueless (but often well-meaning) friends, so often I see these words used interchangeably, as if they are synonymous. The people who say these things often don't mean anyone harm, but that's exactly what they are doing - they are causing harm to anyone who suffers with addition, and those who live with dependence.
Using the wrong word isn't harmless at all and this blog is REALLY important to anyone who falls into either of the above categories.
I'll explain why the proper use of each of these words, even in CASUAL conversation, *SHOULD BE* crucially important to all of us* . This doesn't just apply to those of us living with (or loving someone) living with chronic pain (and not just Ehlers-Danlos Syndrome, ANY pain.) I hope you'll take a moment to read on, and find out why.
So why does it matter which word we use, and how could the wrong words harm anyone?
The short answer, is that using the wrong word in front of the wrong person can PERMANENTLY impact your future health care, including the possibility of leaving you facing a lifetime in untreated pain.
It is literally THAT important.
If you say the words "I'm concerned about addiction" to a doctor who is considering prescribing you pain medication of any kind - there is a GREAT chance that they are IMMEDIATELY going to re-consider, and put you on the absolute minimum - or no medication at all, because doctors are TERRIFIED about losing their licenses and facing law suits over "causing" drug addiction.
The media is pushing an agenda that DOCTORS are to blame for the current opiate / heroin addiction crisis and the resulting millions of deaths from overdose - so if you want to fast-track yourself into a lifetime of non-treatment, bring up the "A-word" early on with any doctor. Let me explain exactly what I mean:
Addiction kills people. Addiction treatment is a billion-dollar industry, law suits against medical professionals, who wrongfully or not, are being blamed for addiction - it's a terrifying time to be a doctor, especially in the current society where no one wants to take responsibility for their own poor choices in life. Hell - if a woman can spill hot coffee on herself and win a HUGE lawsuit over it - why not choose to binge on drugs and party-hard, and then sue the doctor who thought he was treating you for "back pain"? Right? The lititigeous society we live in, and the need to place blame on anyone but oneself, has lead to a dangerous, DANGEROUS trend in pain-management - doctors are terrified to put anyone on any medication they COULD abuse, and people with real pain are being hung out to dry, and offered no relief at all because doctors are left thinking "Well, at least they can't sue me for becoming addicted to pain killers if I refuse to prescribe them!"
Millions of people die as a result of addiction every year. Dependence, on the other hand, has never killed anyone. Overdose- yes - but dependence itself is not in any way dangerous.
"DEPENDENCE" is not a dirty word. Diabetics are dependent on insulin, and infants are dependent on their caregivers. In terms of medication - dependence is the PHYSICAL reaction that's EXPECTED when a person is put on medication long-term - it's the body's adjustment to having that medication in your system on a regular basis. Dependence is in no way indicative of any kind of irresponsibility on the part of a patient - it's an EXPECTED part of treatment. When the human body adjusts to the prescience of medication, it's normal for the body to learn to expect that medication. It's the reason why MANY medications require that you be slowly weaned rather than stopping suddenly - it has ZERO to do with misuse or abuse, it's simply the fact that your body has come to expect the presence of a chemical and in the absence of that chemical, the body can have a range of reactions. The most common reaction to the LACK of a medication is known as withdrawal.
It's usually opiates or benzodiazepines, the two medications you hear people discussing when the word DEPENDENCE or ADDICTION comes up. On any long term course of treatment with MOST medications that treat pain, mental illness and many other conditions - becoming dependent on your medication simply means your body adjusts to the presence of the medication, that in time you may need a higher dose for the same affect, and that its likely you'll experience withdrawal symptoms if you suddenly top taking the medication. Dependence is a reason it's CRUCIAL to always be up front, honest and straightforward with your physicians. You need to always discuss the proper way to start, to titer up or down, or to stop any medication that has the ability for dependence.
Withdraw symptoms from pain medications are no joke and can kill you if done wrong... it's no joke. BUT - and this is perhaps the most important point in this whole post - just because a person is suffering from withdrawal symptoms, does NOT mean that they are an addict or that a person has done ANYTHING wrong. It simply means that their body is used to taking a certain medication and it's no longer in their system.
NOTHING about dependence is unexpected, upsetting, or indicative of a drug problem in any way. Diabetics become dependent on insulin. Those with congestive heart failure become dependent on heart medications. No one would EVER roll their eyes and say with disdain "Are you sure you want to start taking insulin? My aunt was diabetic and became dependent on insulin!" -that would be absurd. Of course their body NEEDS the medication, its treating a legitimate illness!
Dependence to antidepressants or pain medications is IN NO WAY negative or shameful- if you're taking it as prescribed, and you're legitimately treating depression or severe pain - you're going to develop dependence.
Addiction, on the other hand, is a psychological issue in which medication is taken for recreation - to get high. Yes, a person can start off treating a legitimate condition... like post-par-tum depression or temporary pain, and yet continue taking the medication long after its needed. That isn't dependence... it's ADDICTION.
When a person misuses or abuses street drugs, over the counter or prescription medication (be it legally prescribed to them or not)- for ANY reason other than why it was prescribed... that's addiction. Taking too much of a medication, taking medication too often, or taking it in a way OTHER than how it was prescribed (like crushing and snorting medication that you're supposed to swallow whole... that's addictive behavior.
Any time a person misuses or abuses a medication or drug, they are displaying symptoms of ADDICTION.
☆☆ NOT DEPENDENCE ☆☆
If you or someone you know is displaying addictive behavior, the person needs to seek both physical and psychological treatment (by professionals) to get clean and to determine WHY they have developed unhealthy & addictive behaviors.
Coming from my career in law enforcement where I've seen a LOT of people misusing and abusing both street drugs and prescription medications, I can tell you with complete honesty... addiction doesn't "just happen" because a person broke their arm and was put on percocet for ten days. Never do you hear a person in a battle with addiction say "My life was going along just perfectly, then I was put on medication and next thing you know, I'm shooting up heroin in an alley."
The reasons behind addiction are COMPLEX, complicated and not the point of this post. The reality is that no matter how you feel about addiction, it STARTS with a choice to put a substance in your body that you didn't NEED - it starts with a CHOICE. Addiction may be a disease, but unlike pancreatitis, hypothyroidism or cancer, addiction begins with a person CHOOSING to put a substance in their body for a purpose other than a medical need.
The DISEASE of addiction is what happens when the cycle of dependence and addiction intertwine and you're left with a person who needs more and more of a drug to get high, and who ends up chasing that high they once enjoyed. As the body becomes more and more used to a substance, it can be difficult or even impossible for a person to get the euphoric high they once got - they need more and more of the drug, and often times it will come to a point where they are doing the drug just to avoid withdrawal symptoms.
Addiction STARTS with a choice, and just as a person makes the CHOICE to use a drug for purposes other than they're intended, an addict can only be treated if they CHOOSE to do so. Addicts can't be forced, guilted, shamed or bullied into sobriety - they have to choose sobriety to have ANY chance in hell of success. If you're in this situation AND dealing with chronic illness, I truly feel for you, I really do - some former drug abusers have, with therapy and supervision, been able to later handle responsible treatment with medication. Others can never take a single dose of their former drug of choice without falling right back into the cycle of addiction.
It's CRUCIAL to understand that a person can be dependent AND addicted, but that dependence doesn't require any treatment. Unless you wish to stop or change medications, for example, because your treatment is no longer effective, or perhaps because you're considering pregnancy. You would want treatment to avoid severe withdrawal symptoms, but not the same kind of treatment that an addict would require. Because there was never any MISUSE of the medication, the treatment wouldn't require the psychological component. This is why using the right terms when we talk about dependence and addiction is SO IMPORTANT.
If a newly pregnant mother wants to change pain treatments to something less dangerous during her pregnancy, she will likely need treatment to avoid the dangers of withdrawal... but she doesn't need addiction counseling. And if she USES the word "addiction" rather than "dependence", she could face Child Services swooping in to take her newborn baby away. Does that make the difference more clear - how CRUCIAL it is to use the right word?
Its *EPICLY CRUCIAL* that we use the right terms any time this topic is discussed. Doctors use addiction as an excuse not to treat legitimate patients in pain. In reality, repeated studies have proven that only an INCREDIBLY TINY number of patients who are living with real pain with ever face addiction to medications they are using to control that pain. Research has suggested that of those who have been diagnosed with both chronic pain and addiction... the majority of those people suffered from addiction or mental illness issues BEFORE they were suffering from chronic pain. This makes it even more clear: If you are an otherwise mentally healthy person, the chances of becoming addicted to medication that you're using (under close supervision from your doctor) - your risk of ADDICTION is VERY VERY low -unless you've battled an addiction in the past.
This is GREAT news for many people who are suffering but are TERRIFIED to try stronger medications. Often, somewhere along the line, they've been traumatized by someone who used the WRONG WORD. They then came to wrongly believe that treatment with opiates is going to CAUSE an addiction. That's not how it happens, folks, 999 times out of 1000. In reality, most chronic pain patients can't comprehend addiction because we're just trying to control some of our pain to get through the day. 'Getting high' isn't enjoyable or even possible for the majority of patients who are treating real pain.
It comes down to being honest with yourself. Is your pain truly what you describe to your doctor, or do you embellish and exaggerate your symptoms? Do you make things sound worse than they are because you are in FEAR of pain, or are your describing your symptoms accurately? Have you requested certain medications because you prefer how they make you feel rather than how they treat a symptom? Have you ever told a doctor that you're allergic to something, in order to get a prescription for a different type of medication? Those are common signs of manipulation and addiction. Doctors look for these red flags because they are so commonly used by addicts.
When patients try to lessen the social impacts of addiction by using the wrong terminology (saying "I became dependent on it", rather than "I developed an addiction."- it leaves many people assuming that anyone who takes pain medication long term is truly an addict. It leads to belief that anyone who takes these medications is misusing the medication, exaggerating their symptoms, exaggerating their pain, or taking these unnecessary and powerful drugs just "for fun".
We patients, as a whole, need to be sure that we discuss and address these things in honest terms. If you have a psychological dependence - you find yourself taking more and more, not because the medication is no longer working, or not at your doctors instruction- but because you like the warm-and-fuzzy feeling opiates give some people, then we need to call a spade a spade. It doesn't mean anything less of your illness, it doesn't diminish your disease or even your pain, HELL, if anything, we should ALL have much MORE sympathy for an ill person with addiction because their inability to trust themselves with taking medication responsibly means that they likely to successfully treat their illness.
As it is, doctors don't want to treat chronic and invisible illness pain. They risk investigation by the DEA, loss of license and arrest if they over prescribe or if a patient in their care later blames the doctor for their addiction... and sadly... MANY ADDICTS DO. After all, at its root, addiction starts with dishonesty. At its core, addiction is often dishonesty to one's self. "I really do need this," the addict tells himself, "My pain really IS that bad." Addiction starts with lies to oneself and progresses to lying to everyone. And because it starts with dishonesty, MANY medical professionals have come to believe we are ALL faking the severity or existence of our pain to get "good drugs". You show me one chronic pain patient who's never been treated like an addict, and I'll bet he's riding a unicorn, because we have ALL been there. Women and young people *especially*.
When someone with our condition actually behaves dishonestly due to mental illness, PTSD, anxiety, depression...and lies, self medicates, and abuses prescription drugs that others NEED to treat our pain, it hurts all of us. More than anything, it means that most doctors will refuse to treat that person with controlled prescriptin medications going forward. When someone overdoses on sleeping pills, it doesn't matter how severe their insomnia is, there's a good chance no doctor will ever want the liability of prescribing for them again.
It's a complex problem and I soberly and sincerely feel REALLY bad for anyone suffering with the same pain I live with. For someone who can't trust themselves to take medication that will control their pain... it's a total nightmare of a problem. There are medications that produce a "high", but they are generally far less effective at controlling severe pain. Some treatments exist, like suboxone, that is often used for addiction treatment - these can help some people's pain without allowing them to feel the euphoric the high, and if you've got pain and addiction, I genuinely hope that that works for you, and that you'll get counseling and treatment going forward for the underlying conditions that caused you to abuse your prescription medication in the past.
Recovery is a forever thing, and I have several sober friends who have been sober a very long time (decades), and my only suggestion (Having worked in law enforcement and seen a LOT of addiction first hand) is PLEASE, Please seek SCIENCE-BASED treatments as opposed to purely theological.
You can pray yourself silly, if that floats your boat, but science based treatments have proven infinately more effective than "higher power" based programs like N.A. and A.A. which have higher than 98% failure and relapse rates. There are several fantastic studies online that explain how much MORE effective science based treatments are than 12-step or any faith based programs... and doing the first DOESN'T proclude you from ALSO doing the latter, if faith-based programs interest you.
Unfortunately though, the faith based programs OFTEN suggest they are the ONLY way, which LEGITIMATE, highly researched scientific studies have proven are not true. \
Whatever it takes, I hope if you're suffering with addiction, that you get and stay clean, and that you also get treatment for your pain.
And I genuinely hope that you'll understand what I'm trying to convey- that I'm not trying to be rude or mean in any way... I just *really* want people to understand the CRUCIAL reason we all need to accurately use the terms "dependence" and "addiction" & the MASSIVE difference between the two.
It absolutely DOES matter.
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 was 29 years old when I became pregnant - the specifics of the situation are a story for another time, but at that time, I was, by all accounts, a fairly healthy and very active person. I was a police officer, I raced BMX on the weekends, I rode a motorcycle regularly and went horseback riding every Sunday morning. I had a lot of "little accidents" and bruised easily plus I suffered with an unusually weak immune system, and I had lots of small things that seemed odd for someone my age - but I never would have dreamed that I would one day be completely disabled because of something I'd had all along.
It wouldn't be fair to say that being pregnant CAUSED me to become disabled, but had I not become pregnant, it's impossible to know if i would have ever been seriously affected by the Ehlers-Danlos Syndrome, especially to the extent that I am now. I may have gone through life just being sick more than the average person, being unable to tolerate the heat, and having an unusual number of "little issues" here and there with my health.
I didn't want to have a baby- I had never wanted kids, but all of that is an entirely separate story. Regardless, by the time I was nine months pregnant, my best friend was doing the best he good to take care of me as the swelling (of my legs and feet) had gotten so bad I could barely walk and all I wanted was the baby O-U-T. When we had gone to the hospital to have the baby, my birth plan was a scheduled c-section but my baby plan was open ended... I was fairly sure my son would be headed to an adoption agency as my life-plan had never included children and I had no intention of being a single parent.
During my pregnancy, I had moved to my home state of NJ to be with family - and with my best friend who I came home every other month or so to see during the ten years I'd lived in Florida. How we didn't know that we'd one day end up married neither of us can figure out in retrospect... and even though we never technically dated (about a week before our son's birth we discussed that by entering a relationship we were basically acknowledging that we were planning to get married - hell, hadn't what we'd been doing all that time we'd spent together over 14 years essentially been dating without the kissing and whatnot? Anyway, he is Kaedin's father, and he had been his daddy since our son was the size of a lima-bean growing in my belly even if we didn't actually know we'd choose in the end to become his parents.
Justin also had never wanted kids, I was dead-set against them, and despite our being the best friends for fourteen years, it wasn't until I moved home pregnant and in crisis that we fell in love... right there between the morning sickness and my ever-expanding mid-section, somehow it happened. The first time he told me that he thought I was beautiful was a slightly sideways comment about how pregnant women can be really beautiful. I got what he was throwing out there... neither of us had ever been the mushy type - after all, we had been platonic besties for over a decade, but somehow it worked.
And as it turned out, he is the most amazing father in the world - like I said, he was, even before we knew we'd be parenting the little munchkin. He was incredibly supportive, from foot rubs and staying up all night with me when I was feeling really awful to emotionally supporting me through the entire crisis that had caused the pregnancy in the first place. But my amazing husband (he's my husband now, he wasn't yet then) isn't what this blog is about... this is all about how my pregnancy caused me to become disabled.
Despite his best effort to keep me smiling and get me comfortable, even all of the foot-rubs, and back-rubs (Not to mention and how amazing to go from scared, alone and pregnant to having the most wonderful man in the world supporting you through a rough pregnancy ALL all the emotional trauma to boot), I was still getting more and more uncomfortable.
He would hold his hand on my ever-expanding belly to feel those insane kicks (and the hiccups my son had for almost an entire month before he was born!) and it was truly amazing to know how loved we both were - but still, I was in a LOT of pain by the time the 9-month mark rolled around. I hadn't gained much weight throughout the entire pregnancy (in retrospect, thank god for that!) - but all the sudden at eight months, it looked like I'd swallowed a basketball.
Due to the traumatic nature of my pregnancy, sadly, there are few pictures the documented the journey, so you'll have to take my word for it, but at seven months along, I was still getting the side-eye whenever I'd park in the "expectant mothers" spot, and yet less than a month later, right around Christmas, everyone (including myself) was quite positive I would burst at any moment, possibly with twins! So when the day finally came (and yes, we made the decision to keep our son and bring him home while daddy was holding him in the middle of my tubal-ligation... the big emotional mess of a decision I'd made as a kick-back from the trauma of the pregnancy in the first place...) - I thought that all that back pain, leg pain, etc would finally end.
I went home on pain-killers - for about ten days after my c-section and during that time felt pretty great. Of course, much it it was probably the fact that I was now engaged and in love with both of my amazing men... I remarkably feeling well for someone who had just had a human being ripped from their abdomen and I was actually up walking around quite a bit just hours after our son was born.
I had remembered the horror stories from my sister in law who couldn't walk for days afterwards, but none of that was the case. In all reality - had my digestive system responded better to the dilaudid, I probably could have gone home that next day, but instead we got snowed in and spent six blissful days with nurses and catered meals and we all snuggled together and slept in my hospital bed. (It's a pretty weird way to start a marriage, by the way... his family was all "So... you're not coming home after work because you're at the hospital with your new baby.... um....)... but again, THAT is a whole other story. :-)
Our First Family Photo (1/24/11): I was crying. Right before this photo was taken, my then fiance brought the baby over for my first look and said to me, "I think we need a car seat." Until that point, we hadn't decided that we would be parenting vs. my placing the baby for adoption as I'd been planning through my pregnancy, so this picture is incredibly special to us. I was so incredibly blown away that my best friend had fallen in love with our son so completely before I'd even had a chance to lay eyes on him.
The problem wasn't my body wasn't the c-section or the recovery afterwards, what actually "upset" my faulty collagen had started long before the surgery as my body was moving through the stages of pregnancy and preparing for labor. All the low-back pain and hip problems I'd been writing off as pregnancy-related weren't actually -they were foreshadowing.
The problem began to show itself in the weeks after the birth when the low-back pain from the pregnancy (it had crept up right around the eighth month) had never gone away... by early summer it had gotten so bad I was at my GP asking for pain medication and MRI and x-rays. Disappointing and confused by "minor arthritic change" being the only notable thing, I couldn't understand why my pain was only getting worse. And spreading. It seemed like my knees, my ankles, my shoulders... one at a time, every joint in my body was starting to slip out of place, to sit funny - I'd dislocate a hip during sex (sorry for the TMI, but I promise, no one was more traumatized than we were!) - I'd step down a step only to find that my ankle had slipped out of place and end up in a heap on the ground.... something was very wrong and it wasn't related to my now months-gone pregnancy. By now my son was standing on his own, and I was becoming less and less able to stand on my own, even sitting up for long periods was excruciating. While he was having tummy time, all I could do was lay flat on my back on a heating pad, taking twice the recommended dosage of Advil and nothing was helping.
Finally, almost a year after my son's birth- after various referrals and two orthopedists who told me that nothing was horribly wrong with my back, I saw an orthopedist who was able to give me some REAL answers. (For the record, my husband had already come to the right conclusion) But for me, this was a real specialist, who I really trusted, who could explain what no one else had figured out: I have Ehlers-Danlos Sydrome, Type III. Otherwise known as Hyper Mobility Syndrome, it's a genetic condition that causes faulty collagen, which is otherwise known as the glue that holds us all together. So here I was, feeling as if I was coming apart at the seams... and I really WAS! As upsetting as it is to have a genetic disorder and no hope for a cure - everyone I know who has been diagnosed to this day is just glad that they finally have answers.
Being told that it's not real, that it's all in your head - it's demeaning, it's downright abusive. To have doctor after doctor treat you as if you are a head-case while your body is being racked with such severe pain that your quality of life is becoming non existent, you just don't understand what that's like until you're living it. I was just glad to have something I could go home and Google, to read about, to learn about, to learn to cope. The first stage of accepting this condition is knowing you have it - so at least I had that.
And for the record, I really have to thank my orthopedist Dr. Levy from Sprains Strains and Fractures in Cherry Hill, NJ because he's an amazing person and he really may well have saved my life, because up until the point where I started getting proper treatment for this incredibly painful condition, it was not looking good for me.
I spent the first few days after the diagnosis in tears- at first I was terrified I had Type 4 (Vascular EDS, which is often deadly) - I do not, I have type III. But still -this has no cure. It's a lifetime of pain. The dislocations will never go away, they will never stop - surgery won't help. This is a condition you manage and learn to live with - but it's not something that you can change because it's faulty genetics. And worse... I could have passed it to my son. But now you know the end of the story, and you didn't really find out HOW I went from being a healthy happy 130 lb police officer to a 185 lb disabled woman with a three year old son... so let me explain how pregnancy (and later, an inept moron of a doctor at Virtua Hospital in Voorhees) destroyed my body...
(but first let me say... even had I known that this would be the outcome... we wouldn't trade our son for the world.)
HOW PREGNANCY CAUSES EDS SYMPTOMS TO GO AWRY ...
The relaxin hormone floods a woman's body at the end of pregnancy to prepare her hips and pelvis for birth - unfortunately that hormone loosens up ALL your joints, not just your hips and pelvis. A healthy women's body will slowly tighten back up, and her lax joints from pregnancy hormones will slowly go back into their normal place after labor as the healthy collagen does it's job after the pregnancy is over.
Unfortunately, my defective collagen couldn't help my body go back to where everything belonged. The pregnancy set me up for a lifetime of joint dislocations each and every time I move, even ever-so-slightly, the wrong way. If I reach for something in front of my, my shoulder can drop out of the socket. When I roll over in my sleep, my hip often slides in and out of socket more times than you flip your pillow to get to the cool side.
Every joint in my body regularly dislocates, except oddly, my elbows, which seem to have remained free from the effects of my hyper-mobility. Everything else in my body is affected; my jaw broke during surgery to pull my wisdom teeth, my fingers dislocate from typing, writing with a pencil is physically painful, my wrists snap from picking up my cell phone to look at my text messages, toes slide out of socket and are so cramped and painful the only way to put them back in place is to get on my feet and apply pressure to them with my whole body to "re-set" them into place, my ankles drop if I try to run (that's a joke - trust me, there's no running going on here!), my knees dislocate from staying bent on an airplane or at a movie, and more than anything, my hips.
My hips are why I walk funny - they are why I'm in horrible pain as i type this blog, they are why I can't sleep, why my back is constantly a huge tangle of painful knots.
My hips are the bane of my existence... That's what the collagen disorder, EDS Type-III is, after-all. As a child, they put these awful bar-shoes on my feet to try to stop me from "toe-ing in" as they called it. Doctors told my parents not to worry and that I'd "outgrow it" and not one specialist was concerned that I can rotate my feet well over 180 degrees inward, even walking with my feet facing forward and backward at once. Here's a photo to illustrate. And here's one that shows what I can do standing up...
It's quite typical for woman (and their doctors) to only put together all the puzzle-pieces of a lifetime of "little things" together after a pregnancy, when all the damage done by the relaxin begins to cause chronic pain. And that's what happened to me.
HOW LEVOQUIN AND CIPROFLOXIN CAUSED ME PERMANENT INJURY AND A LIFETIME OF PAIN...
One of the biggest things that contributed to my life-long battle with chronic-illness (in addition to the pregnancy that triggered the onset of severe symptoms) - was 100% the fault of Virtua Hospital and the HORRENDOUS admitting doctor who was put in charge of my care there. (*Please see the foot-note to this story) That's a story for another time, but I promise I'll tell it.
There is some debate about the facts - but this we know for sure: Shortly after my son's birth my husband and I both were diagnosed with Mono (well, to be fair, he had Mono, I was battling with the Epstein-Barr virus as I have immune system issues we didn't yet know about). My husband became jaundiced and was hospitalized, I had an IV infiltrate and and had a serious issue with cellulitis I began to battle with nearly permanent urinary tract infections and kidney infection symptoms.
I had sharp pelvic and abdominal pain, pain in my low back near my kidneys, burning and the constant feeling of needing to pee.... it was never-ending and so severe that I went to the ER nearly a dozen times because absolutely nothing would reduce the pain short of IV morphine or dilaudid. It became unbelievably bad during my periods, after sex, after bathing, swimming... I did everything possible to avoid UTI's - literally followed the handbook to a T - including giving up sex for quite a while despite the fact that I was newly married and very much in love. Nothing I did helped.
I was admitted to Virtua Hospital more than nine times in the year after my son was born, and several more times in early 2012. During the first few hospitalizations, I was told that I had MRSA in my kidneys... MRSA is a HIGHLY infectious staph infection. It HAD to have been given to me during a cathaterization... and up until that point I'd had exactly ONE catheter in my entire life: DURING MY C-SECTION... at Virtua Hospital. Isn't that nice? I was treated like a bio-hazard. Everyone who came into my room suited up as if I was an E-Bola patient and even friends and family were supposed to wear gowns, masks and gloves to come see me. My newborn child who I'd care for at home, skin to skin, I was told was not allowed to visit me in the hospital (they got WW-III about that, and I won, btw.) I missed my own baby shower (it was after my son's birth) because I was in the hospital, and I was in quarantine, so they wouldn't even let me guests visit me.
So the onslaught of antibiotics started. They pumped me full of antibiotics and I never began to feel better - only worse. The only thing that ever seemed to help the UTI symptoms was over the counter AZO (which I still use to this day on a regular basis) - even the various antibiotics didn't keep the infections at bay for more than a week or two. Some of my hospitalizations were LITERALLY just days after I'd been released. I was repeatedly treated with two strong antibiotics: Levoquin, and Ciprofloxin.
Each time I would get a bag of IV antibiotics, the pain would come. I felt as if they were pumping wet cement into my body and it felt as if every joint was hardening to a solid. I felt like I couldn't move - the fire-y pain that shot through my veins was worse than the broken jaw, worse than third degree burns, WAY worse than the c-section, even worse than the bowel impaction and intestinal tears I'd survived... it was HELL. I reported to the nurses my horrible pain. Occasionally a doctor would up my dilaudid from every 6 hours to 4, or add Vicodin on top of my morphine, but nothing was ACTUALLY helping. I was just getting sicker and no one knew why.
I'll tell you another time about the world war that went on between the doctors and I, but suffice to say that if a hospital can't explain your symptoms, they have two responses...
1) They'll tell you that they don't believe you're actually sick because your symptoms "don't make sense" or because nothing you're complaining of is showing up on their tests.... and they'll discharge you, even if you have VISIBLE symptoms, such as bacteria or an infection they can confirm.... they'll discharge you, after having you on anti-inflammatory medications, pain medications, antibiotics, probiotics and ran a whole bunch of tests.... and they'll send you home with NOTHING. The hospital will flat out tell you that they don't know the answer and that they "can't keep you here forever" and will simply send you home with NO answers.
2) They'll imply that perhaps you have a mental illness, that the pain is in your mind, or worse, that you are simply there seeking pain medications because you are a drug addict. I repeatedly told the doctor after being trearted with antibiotics that I was experiencing SEVERE and worsening pain... and in response, the admitting doctor flat out accused me of "drug-seeking behavior" claiming that my report of pain made NO sense and COULDN'T be true. (*Please see the foot note below about the serious affects of the Fluoroquinolone family of antibiotics.)
*I was accused of this once - by the same idiot doctor I mentioned above and in the blog post (here).
Why? Because at the time, in her words "No one being treated for a kidney infection SUDDENLY has sharp severe pain in her hip, shoulder and lower back. It makes no sense." Seven months later, a black-box warning was added to the Fluoroquinolone family of antibiotics- including LEVOQUIN and CIPROFLOXIN. Read more about this in the footnote or (here).
Basically what it comes down to is this- SEVERE PAIN as a side-effect of those antibiotics is a sign that something is VERY very wrong. And she continued to treat me with those same drugs, over and over and over, all the while, claiming that I was "over reporting" my pain and wasn't being truthful. In the end, her ignorance and ignoring my reports of pain, ended in PERMANENT damage to my joints, throughout my entire body, that I now have to live with forever. .
** Footnote Regarding Fluoroquinolone Antibiotic **
Approximately 7-9 months after I was accused of lying when I reported severe pain during and after IV antibiotic treatments - the FDA released new Black Box warnings about the SERIOUS dangers associated with these antibiotics. Here's the information from the FDA.
Warning: Fluoroquinolone Antibiotics May Cause Permanent Nerve Damage.
“The U.S. Food and Drug Administration (FDA) has required the drug labels and Medication Guides for all fluoroquinolone antibacterial drugs be updated to better describe the serious side effect of peripheral neuropathy. This serious nerve damage potentially caused by fluoroquinolones may occur soon after these drugs are taken and may be permanent...
Peripheral neuropathy is nerve damage in the arms and/or legs, characterized by “pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or sense of body position.”
Due to their tremendous health risks, fluoroquinolones should be reserved for treating serious bacterial infections that won’t respond to any other treatment, when the patient is made fully aware of the potential for serious adverse events. Instead, they’re often inappropriately prescribed for mild conditions like sinus, urinary tract and ear infections.
In fact, fluoroquinolones are among the most commonly prescribed antibiotics in the United States. I highly recommend you take pause before filling a prescription for these drugs, especially if you have a “routine infection” that has not been treated by other agents that have a safer side effect profile.
You should not expose yourself to this degree of risk unnecessarily! The dangerousness of fluoroquinolones definitely warrants some serious discourse with your health care provider about whether they are really necessary, versus safer treatment options.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.