Thank you for taking moment to read my thoughts from tonight.... I know chronic pain isn't fun to think about, but I ask that you take just a moment to hear a few thoughts.
I hope that if you're suffering with chronic pain, that this blog will help you share how you are feeling with those that don't understand. And if you don't have live in pain, that this may open your eyes to a situation you didn't know existed.
Your comments are welcome & encouraged.
Do you know what living with chronic pain is like?
I have to ask - have you ever woken up from the pain of your hip having been dislocated for hours? Has the weight of carrying a magazine or holding a package of markers ever dislocated your wrist? Have you ever been so exhausted by taking a shower that you spent the rest of the day recovering? Have you ever had to stop in the middle of signing your name because your fingers dislocated from the pressure of the pen? Have you ever taken a step only to hear a sickening snap, unsure if something broke this time - or if its just 'out again'? Chronic pain isn't a competition - maybe you live with migraines or have suffered from a serious car accident. Regardless of the cause - living with pain that doesn't go away is more than most people can wrap their minds around.
Chronic Pain and how we're treated by Medical "Professionals"...
I want to talk for a moment about how chronic pain is TREATED and how badly those of us who seek treatment are treated by medical staff. I would like to talk about how you can go into any doctor's office and you have 100% of the staff's attention and concern until you mention ONE thing - that PAIN that just won't go away.
Let me be clear - I have never been diagnosed nor have I been suspected of suffering from mental illness. I was a police officer (back in my health) who had a respectable career which was never marred or disgraced. I've never been arrested, never been in any real trouble of any kind, and I have never abused or misused prescription medications - my experience with "partying" was limited to trying marijuana a handful of times at 20 years old when I worked at the Renaissance Faire. I knew early on that I wanted to work in law enforcement, and I took that seriously. And even though years later, I take powerful opiate medication EVERY day - I have to be clear: I am no more addicted to the pain medication that I am DEPENDANT upon than a diabetic is "addicted" to the insulin they take.
People like myself, living with severe chronic pain KNOW that you emergency room nurses, ER doctors and our own family physicians are so cynical and burnt out that by default you don't believe ANYONE who leads off complaining of pain. We've been talked to like the scum of the earth while writhing with pain worse than you've likely ever experienced. Short of major surgery, days of undiagnosed appendicitis or a compound fracture - it's not likely you've ever had to answer questions while unable to complete your thoughts because of pain.
We see the looks you give us from behind the pharmacy counter - the suspicion, the disgust. We hear your whispers from beyond the curtain. We've heard it from our own family members or friends, not to mention every medical staff member who's asked what medications we take. If, god forbid, someone HAS prescribed any controlled substance, that questions is immediately followed by a disbelieving "but WHY?". AT the first mention of ANY opioid (unless we're also dying of cancer) the suspicion abounds and our treatment immediately disintegrates. We're treated as if we're criminals, addicts, common junkies... and we hear you. We see you. And we'd like to know- what would YOUR solution be to the pain we live with? For whom do you think these medications were created? How exactly would YOU do it better and would you be willing to take our pain for 30, 90, 365 days in order to prove how you could handle it with just ice packs and ibuprophen?
My Pain Management.
Yes. I do take morphine. Every day - for five years, once a month, I drag myself out of the house regardless of how I feel to sit through an appointment that can last up to five hours. I'm subjected to a urine test monthly - to make sure I'm taking the prescribed medication and not selling it. They also make sure I'm not taking anything they haven't prescribed. And I have to PAY for the indignity of not being trusted - did you know that?
Sure; The bottle says every 12 hours, but I'm human... occasionally I'm lucky enough to sleep too long, or I get mentally busy and I forget- and then I get to feel not only the pain. The pain that comes rolling in, in waves, but I also get to feel that distinctive sickness...I get to experience the SUDDEN, SHARP and repeated painful yawning (there goes my jaw, out again).... the ice cold sweat stinging my eyes, the nausea, the dizziness, and quickly my mind can't focus (even on the pain). My palms sweat... and that's just the beginning. But thank god I have another pill to take- and in fifteen to thirty minutes both the WORST of the pain and that awful illness will fade... that's what I remind myself each time I'm overdue for a dose. At least I have the option to take a pill and it will fade.
But without that monthly appointment, and without that pill, I'm reminded, in excruciating detail- of every movement I've made in the last ten days. I'm reminded of just how many fingers, which wrist, knee and how many ribs I've dislocated and subluxated and, of course, which hip has spent more time *out* of its socket than where it belongs. Don't get me wrong - I'll still feel all of that once the pill kicks in, just a little less clearly (thankfully). It never actually goes away.
We aren't all so "lucky".
For hundreds of thousands of others like myself - those who have yet to be diagnosed, those who have yet to be believed, those who have yet to find a doctor willing to prescribe them any kind of long term or extended, slow-release or powerful enough pain medication... for them the relief never comes. They get to feel ALL of it, ALL of the time.
Thousands of people living with the same pain that I face , will make a heartbreaking and permanent choice - often the only choice they feel they have left: many of them end their lives. I even, sadly, can understand why they make that choice.
These people aren't dying from losing the fight with depression. They aren't overdosing because they lost the handle on an addiction. Please, take my word for it- living with this constant chronic 10/10 pain, in which EVERY movement you make, every breath you take, is met with excruciating pain... there are only two choices- PROPER pain management or death. There is no in between- no one is designed to live in devastating pain. And when you have NO options for controlling the pain - people resort to things you never think they would. Honest, law-abiding people will inject themselves with sketchy heroin just to get a brief break from the pain - and sometimes those people overdose and die, and then their family learns that they overdosed, and people are blaming this horrible situation on the DRUGS and not the REAL PROBLEM: Chronic pain that is being IGNORED by the entire medical industry!
I know that despite the Ehlers Danlos Syndrome, I am so very lucky. I am EXTREMELY fortunate to live in a place where I have help watching my son, where I'm covered by insurance that pays for most of my medical care and medications. I know how lucky I am to have an incredible husband who fought for me and advocated for me and who attended SO MANY awful hospital stays and doctors appointments with me until we found the right team of doctors. But even with a rheumatologist, a gi, an endocrinologist, an orthopedist, an allergist, a dermatologist, a uro-gynocologist, and an oral surgeon who specializes in EDS (and pulled ALL my disintegrating teeth thanks to the EDS) plus a fantastic general practice doctor... it was only ONE specialist, after three years who was willing to write scripts that would eventually get me out of bed and keep me out of the constant rotation of hospitals - by prescribing the powerful long acting opiate pain medication that I've taken every day for five years. But I can't tell you what I might have chosen if I hadn't finally gotten relief through LEGAL and WELL REGULATED medication - it could have been heroin - it could have been suicide.
I remember, each time I'm late taking a dose, each time my pain is still a 10 and I can't take anything more medication for hours for the breakthrough pain... I try to focus on the hundreds of thousands of people who DON'T have that one amazing doctor, or that incredible husband to advocate when they were too weak or too depressed and in too much pain to make just one more phone call, or to go to just one more appointment - Many people can't stomach one more visit with a doctor where they can expect to be treated like a junkie looking for a fix rather than a patient in PAIN. I know how lucky I am.
What do you do when you can't get anyone to help?
People like myself live with pain that makes you break out in a cold sweat, the kind of pain that you can not experience without squeezing your eyes (filled with tears) closed and focusing on your next breathe, a pain that is SO searing, so hot, so electrifying that you can't sleep for days at a time...giving rise to the term "painsomnia"... and there are *millions* of us living with this unending pain, and the *LUCKY* ones have access to medication that only *sometimes* helps.
The pain NEVER fully goes away - even when we're laughing, or eating our favorite food or celebrating our birthday or a promotion or doing something unusually active (that we'll no doubt pay for later)... the pain is still, EASILY, the number one thing on our mind, no matter how hard we try to focus on whatever BETTER might be going on.
And on our bad days? If you don't live with one of us, you've likely never seen or heard from us during the bad days. When we're sick or sad or heartbroken or swimming in one disaster after another...our pain just AMPLIFIES anything bad and makes it THAT. MUCH. WORSE. It's not a mystery why people with chronic pain are ending their lives in STAGGERING numbers, or why people are turning to street drugs when their pleas for relief from the pain have been ignored for months or years on end.
Having a "good day" can be the worst thing -because we tend to over-do it. We want to cram in everything we haven't been able to do in the last few weeks, or months, because hell, we never know when -or if- we'll ever get another "good day". And worse than overdoing it, and paying by needing days of recovery for a simple day of running errands - is the immediate judgement when we're seen out and about - god forbid we are laughing or smiling - because then it's assumed we are ALWAYS fine and that the other 99.9% of our life is a great big lie. How do you think that feels - to be told that we aren't EVER allowed to look or act well, because while sure, our friends and family want us to participate in our own lives... as soon as we do, it's assumed that we should ALWAYS be able to. It's a horrible, horrible Catch-22.
In reality, chronic pain and chronic illness doesn't conveniently disappear when the weather is nice, when we're starving and need to get groceries, on our wedding day or when the baby cries and the dog needs to go out... it doesn't turn off during that one day we have off from work this week, during the vacation we planned months in advance, or on the afternoon our spouse is both off from work AND "in the mood"... it doesn't give us the evening off on the evening of the concert you got tickets to AND found a babysitter for. It's ALWAYS there. And PATIENTS with chronic pain and chronic illness don't go away just because the hospital discharges them, the ER sends them out the door, or their doctor's office says "sorry, we can't or won't prescribe you medication that can help you."
Severe chronic pain is all-encompassing & it doesn't give you a break, ESPECIALLY not when you need a break the most. As a matter of fact, those are the times when the pain is at it's worst.
And we aren't supposed to talk about it either.
We try not to talk about it for fear of being a constant bummer - we are often downright in FEAR of the moment a doctor asks for a number to describe our pain. Do we downplay it so they don't think we're exaggerating? Do we tell the truth and risk that they assume we're hypochondriacs or just jonesing for a fix? They don't see that we turn down attending FAR more fun events than we attend or have missed so much work that our job is in danger and when we were absent and we say "I had a bad day" or "I wasn't feeling well" it WASN'T just like last week when you had the sniffles and stayed home from the office with a good book and a hot tea. When we are brave enough to tell a doctor that our pain is a 10 - it has probably BEEN a 10 for a very long time. And sadly - we're probably EXPECTING an eye-roll in response.
If you work in the medical profession I have ONE request... (PLEASE understand - I know that you work in a VERY demanding and difficult line of work. I do realize how much pressure is on you NOT to treat our pain.)
But PLEASE... Please take a moment with each and every patient to remember, for a moment, that not everyone who tells you they are in pain is just looking to get high.
1) Speaking for all of us in constant pain - I beg of you: PLEASE don't immediately judge us. Please don't assume that because we are crying too much, or not enough - because we are preoccupied on our phone or curled into a ball - please know that we all cope differently and just because we aren't sobbing and begging, it doesn't mean that we don't want to.
Please don't leap to the conclusion that no one is *really* in pain. For many of us, it took 200% of our effort just to drag clothes onto our bodies and to get to this appointment or into your ER in the first place. At least listen to us. Please talk to our close family members, take a complete medical history, really LOOK at the big picture. Please don't just tune out the moment that you hear that we're in pain.
And for those of you who don't work in the medical profession : perhaps you have a friend or family member suffering. Please try to remember that we didn't ask for this pain. We don't deserve to be treated like addicts, like people who make poor choices or who take "drugs" for fun. If we're lucky enough to HAVE access to pain medication, and we're taking it responsibly - please don't judge us. And if you're concerned, TALK to us, not about us.
Now if you'll excuse me, I have to put my wrist back in and tape it there before the swelling gets any worse- typing this really did a number on me. I'm about nine hours from my next dose, so I suppose I won't be sleeping again tonight... the chest pains from my out of place ribs feel very much like a heart attack... but I'm going to try some meditation and to lie in the dark and hope I can will away the throbbing that started from dislocating my left wrist that happened from holding my cell phone while I tapped this blog post out on it.
I hope you'll rest well tonight. Please keep those who can't rest because of chronic pain in your thoughts.
We really DON'T want your sympathy. We just want to be treated with respect and understanding.
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 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...
Spending a significant portion of my adult life as a police officer is something I'm really proud of - it defined me as a person for most of my adult life - being a cop was WHO I AM - it's still in my blood. Unfortunately, Ehlers-Danlos syndrome is also in my body, and as it's taken it's toll on my body I was no longer safely able to do my job - eventually I have become do disabled that I couldn't even THINK about doing so many of the physically demanding things I used to do every day. Very depressing.
Even more sad than leaving behind a career which very much fulfilled me - creatively, morally, intelligently - is that as I've become a part of the disabled and service-dog handler communities, I've found that SO many disabled people are downright AFRAID of police officers, or have been traumatized by a single negative interaction, or worse, what's turned into a string of times that they have been let down, or worse, victimized by a single officer, a group of officers, or sometimes an entire department's systematic failure to handle people with physical, but far more often, psychological handicaps with respect and understanding.
During my time as an officer, I was proudly among one of the first officers in Florida to be recognized as specialists in dealing with people in crisis - and I put that training to good use. The very first day back to work after attending the sixty-hour course- I took a man into custody who was holding his mother hostage - during a very serious psychological break. He was off his medications, and was EXTREMELY violent, hostile, and suicidal. He also didn't like women OR cops, and was very upset with his mother. He wanted to die- but he didn't get his wish that day.
Single-handedly - without a portable radio (my portable was dead) -without pepper spray (I didnt carry it - I'm allergic)- without a taser (I hadn't yet been to the station as I was en route to work when the call came out) - without resorting to using my firearm (though I had it out, and pointed at him discreetly during the majority of the call - I didn't have much choice given the situation). That day, that man was taken into custody - I later rode in the ambulance with him, handcuffed, when he went to get psychiatrist help. That day, I was able to employ my training and my own experiences and verbal judo skills - to take down someone twice my size, who was VERY angry and VERY much in crisis. But it doesn't always end so well.
These days - we've seen SO much in the news, basically making police officers out to ALL be power-hungry, aggressive Type-A's - all waiting in the wings to use their firearm at the first chance. Those of us who have stood behind the badge know just how unfair - and unrealistic that portrait of police officers is. The LARGE majority of officers have two goals for their careers:
A) Go home safe, every night - and to retire after a long, safe career.
B) To never have to use their firearm - but to use it, if and when the situation calls for it - to protect ourselves, but more importantly, our co-workers and the general public.
That's about it. That's the goal for most cops -stay safe -and keep everyone else safe too. But sadly, from the things you see in the media, many people simply don't have faith that police officers are human beings too - human beings who genuinely DON'T want to hurt anyone. Most of us get drawn into the career to protect and serve. We genuinely want to HELP people. I realize as a female police officer, I have a slightly different perspective... after all, female officers are systematically less likely to use force during any given call. We are incredibly good at talking people into doing what we want - weather it's riding in handcuffs peacefully to jail, or going to the hospital to be checked out - either way, we tend to take the less-hands-on approach at every opportunity. Female officers are also more likely to escalate to deadly force though. It makes sense - most "bad guys" are much bigger and stronger than we are. During my career,every time I put that gun on - I knew that I would pull the trigger if the day ever came that I needed too. Thankfully, I never had to.
But regardless of the fact that MOST police officers are very much non-violent people, whio are intent on helping the general public whenever possible - we all get a bum wrap for the times when people get hurt. I don't agree with the outcome of the situation with Eric Garner. While I'm not here to state that he didn't need to be arrested- I don't agree with an officer keeping his career going strong after ending a man's life who didn't deserve to die. I'm not even going to touch the Michael Brown case because we could go around in circles- all I can say is that I understood why - after being punched inside his vehicle, the officer felt the need to draw his firearm. I'm not here to debate the specifics of the outcome of that case, but again - it comes down to HOW people interact with the police. Even with Eric Garner - part of the problem stemmed from his feeling that he was being wrongfully harassed by the police. He was a BIG man, who was angry and that sadly factored into what ended up causing his death.
The WAY that people interact with police officers is often tainted by their PREVIOUS experiences with law enforcement - and weather you've been arrested a half dozen times, or never done anything wrong in your life - we ALL get nervous when we see those red and blue lights in our rear-view mirror. And for people with psychiatric disabilities, such as anxiety, or maybe more severe cases, like bipolar, schizophrenia, etc - who may have been held against their will (like a 51-50 in California, or a Baker-Act in Florida - there's different terms for it everywhere) - perhaps you've come to fear the police or fear what will happen to you as a result of an interaction. And sadly, many people with psychiatric disorders have a host of controlled substances in their possession- or people with physical disabilities might have pain medications on top of other prescriptions- and this can cause more complications when it comes to our interactions- because at the worst - a person could end up spending a night - or longer- in jail if they are breaking the law, even if it's unintentional.
I want to improve the relationship between the Disiabled Community and Police Officers.
My goal, as a retired officer and a disabled person - is to offer tips to people on how to avoid having negative interactions with the police. I don't ever want someone suffering like I do, with chronic severe pain - to spend a night in jail that they don't deserve (don't get me wrong - I'm not writing tips for criminals - these suggestions are for LAW ABIDING folks). I don't think anyone deserves to go home with a ticket when they could learn their lesson just as effectively from speaking to an officer during the traffic stop.
That was always my credo as an officer too - I never wrote a citation if I felt the person truly got the message from our interaction and wouldn't commit the traffic infraction again.
I'm going to write several blog posts about being disabled and dealing with police officers- although I feel like there are many things that could be said to police officers to better sharpen their skills at dealing with situations with the general public and the disabled communities alike. Some police officers and sheriffs deputies are very good at being fair and their communication is precise and finely tuned - other departments are full of Type A Good 'ol Boy types - sadly - this is where the worst communication break-downs tend to occur, and where people are likely to be left feeling like ANY interaction with the police will have less-than-desirable outcomes. But my blog isn't a training seminar for officers, so I'm going to reach out to the disabled community and the public first, and make some recommendations that will hopefully improve your interaction with police officers, in a way that will HOPEFULLY reduce the number of tickets written - will encourage people who may have had a negative perception of police officers to open their minds and be a little more understanding - and hopefully will result in communication between the disabled communities and police officers to continue to improve over time.
Let's start with "What to do during a traffic stop" - and I'll invite my police officer friends to add in their own suggestions and advice. Let's see if I can use my experience and understanding of both how and why police officers do the things they do (The need for the greatest focus to ALWAYS be the utmost priority on officer safety) - while also understanding the unique perspective of a disabled person- one who may carry medications they need to function, which are also often sought after and abused by addicts. I want to reach out to people who know what it's like to be hassled over the legitimacy of their service dog by a police officer on the beach.
Being in the unique position of truly understanding what it's like to be on BOTH sides of a traffic stop - Maybe I can use my position of having been both an excited, proactive police officer who loved to make DUI and drug arrests - but who sadly also knows what it is like to be young, healthy-looking but fully disabled by the age of 30. i hope that these tips will sincerely help ease your anxiety and reduce your likelihood of getting a ticket or worse, going to jail.
I sincerely hope to help bring these two groups together with a greater understanding of what we can ALL DO in order to better get-along, better understand each other's concerns and needs - and how to BEST get what we all want: No one wants to get hurt, no one wants to go to jail, and no one likes to get a ticket. So let's see what we can do to reduce the likelihood of any of those!
I'll give specific tips for traffic stops tomorrow!
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.