Is your pain not under control?
Six years ago, mine wasn't: Not even a little, and I very seriously wanted to die. Not because I was depressed - or even unhappy with my life - I was simply in pain, non-stop, around the clock, and I couldn't take it any more.
I want to share my tips for how I got my doctor(s) to take me seriously and to stop pushing absurd amounts of Tylenol, Advil, Aleve, Aspirin, rest, a better diet, weight loss (I wasn't even over weight), PT after more PT, and thier CONTINUOUS ignoring of my worsening 10/10 pain by throwing more and more referrals to specialist doctors (ortho, rheumatologist, neurologist, endocrinology, etc etc etc) who likewise, didn't know how to help me get control of my pain.
I hope you have a chance to read this if this applies to you, and I hope it changes your life like it changed mine because my pain is now a 3-5 MOST OF THE TIME.
I was diagnosed with EDS at thirty years old, immediately following a pregnancy. The hormones had triggered what HAD BEEN a lifetime of mild symptoms and I spiraled out of control thanks to misdiagnosis and the use of IV Levoquin & ciprofloxin over ten times in one year.
That first year, with a newborn, I was in and out of the hospital nonstop. First it was mono, then recurrent kidney infections, my pain was a worsening 10/10 around the clock and when my son was seven months old, I was suicidal from the hopelessness and the constant hellish torture of the pain.
I had survived a pregnancy born out of domestic violence and sexual assault. I gave up my beloved law enforcement career and my beautiful home and all my independence to move home and in with my parents - instead of the adoption id planned, my best friend if sixteen years suggested we keep the baby and get married and despite all this, I'd never been more content or happier with my life... But I told my husband I wanted to die... Because even though my life *situation* had NEVER BEEN Happier and more fulfilling... I was in CONSTANT HELLISH PAIN.
"I cant live like this," I told him. "I know," he agreed.
My primary care had me on 10mg vicodin once or twice a day, but it wasn't doing nearly anything. A half hour after the pill was in my system, nothing. I was taking benadryl around the clock to try to sleep through some of my pain. It wasn't working.
I was having nonstop intestinal bleeding from the acetaminophen in the vicodin, the hospital pinpointed it was the cause. Each new symptom (reynauds, the nerve pain, Mast cell rashes, arthritic pain all over, now tendon ruptures from the antibiotics and the interstitial cystitis (that WASN'T recurring kidney infections)...
Finally, I went back to my primary care doctor and laid it on the line.
I told him, "Look, I understand that it's difficult for you to prescribe pain medication long term and in any quantity because of the monitoring and concerns for your license, but here's my reality. I'm in pain around the clock that's not being controlled and its affecting every part of my life. "
I then handed him a *pain journal* I'd kept FLAWLESSLY vigilantly for eight plus weeks. I'd written down everything... My overall "scale of ten" pain score (every few hours), along with a second score for my ACUTE pain. One score for my allover body condition and a second score for the acute pain: so say I just reached for a book and my shoulder dislocated.
Body-wide I may be feeling like a 5, but now my shoulder is a 9 momentarily. I logged EVERY subluxation, every dislocation and how much each one hurt and for how long. I documented how long the acute pain lasted from each injury...in and out of the hospital, I kept it up.
I tracked every single accommodation i made to cope with my eds. Every nap I was forced to take because I couldn't keep my eyes open... Every time I sat down on the floor waiting in line because I couldn't hold the gallon of milk anymore... Every meal I skipped because I was STARVING ...but no one was home to feed me, each time I just couldn't pull myself together to make something and fell asleep STARVING.
I gave my doctor that pain journal and asked him to go through ANY GIVEN DAY with me, line by line. As he read it, he was forced to CLEARLY see, in front of him, in black and white, just how serious my condition had become. He could SEE how much my pain was affecting every single part of my life ... I wasn't sleeping, I couldn't eat, I was constantly hungry and nauseous and gaining weight despite bordering on starvation....
And I spelled it out for him; "I realize there's only so much you can do but what you CAN do is write me a referral and a reference to a pain management physician. Someone who *can* attempt to help me, weather its different medication, additional medications, injections, customized bracing, nerve blocks, you name it... But I can't live like this anymore and I need YOUR help. I need that referral so that I can get the treatment I need to get this condition under control."
I could see that I had him, but I didn't let up: "My entire life is out of control and as a patient, it's right here in your patients bill of rights statement (I pointed to the ACTUAL handout I'd gotten from his office manager) - it says that I have a right to your respect and *proper pain management protocol* and since I realize your hands are tied in regards to what *you* can do for my pain, I need that referral. I need you to advocate for me, to help me find a doctor that you can explain the specifics of my condition to, and to whom you can explain how long you've been treating me and how this condition has taken over my entire life."
In that moment, my entire life changed.
Forty eight hours later (after a minor hiccup, bc the first "pain management" office I was sent to "didn't do medical management" - so I would add to my advice to request a doctor who Does include prescriptions in thier possible care so that you have ALL available options)... But anyway... within 48 hrs I was sitting in a different office, again in tears, with that same pain journal in hand... But this time, it was **happy tears**.
(I also have to wedge in this suggestion here ... No matter how independent you are, please take someone with you who sees your daily struggles and can and will advocate WITH you that will attest to your struggles and how responsible you are with mediation and with wearing your braces and doing your p/t. It helps if this is the person you ask to help when you can't shower, the person who has to make your food when you can't and so on.
They are VERY helpful in getting your doctor's eyes opened. Let him or her talk, in a concise way, about watching your struggle. The doctors need to hear this from someone else. Sadly, if you're female, it often REALLY helps to hear it from your husband, boyfriend, brother or dad. It's not fair but it is true that many doctors listen to men and DON'T take women at their word.)
I was written prescriptions for an around the clock, slow, long-acting 60 MG morphine (bear in mind you'll need to be VERY open minded about what is prescribed. Do NOT shoot down medications unless you are LEGITIMATELY ALLERGIC. If you have a reaction, report it immediately - but don't INSIST on certain prescriptions or you WILL be flagged as "drug seeking")
I say this bc in the hospital prior, morphine never helped me in acute situations, but I tried it anyway. After THREE weeks of using the long acting KIND, it finally started to be processed by my body and it began to lay down a pain relief that dropped my GENERAL pain level to UNDER A FIVE around the clock!
I was also PRESCRIBED (Same day, same doctor) SIX 15mg oxycodone per day for breakthrough pain (later changed to 4mg dilaudid) which I've slowly voluntarily decreased my use of... Beware though, breakthrough medications effectiveness slows down RAPIDLY... You'll learn to only take breakthrough or instant release meds as ABSOLUTELY necessary.)
I was enrolled in the medical marijuana program a year later, after we'd tried (with no success) every muscle relaxer in existence...
That pain journal CHANGED MY LIFE.
So please, consider this advice:
- Be firm but understanding with your doctor.
- Try to keep the same physician long term, but if they absolutely refuse to refer you to someone who WILL see you specifically for your pain (even after pointing out that thier own patients bill of rights insists that they WILL treat your pain reasonably and responsibly) - you may have to move on.
- If you fire your doctor, do so PROFESSIONALLY and get your records to take with you. You can't just walk into a new doctor and ask for strong pain medications.
- You'll need to build a rapport and to be seen over a period of time to establish a relationship with new doctors, respect that.
- Lastly, try to be UP FRONT, honest, and as calm and rational as possible. Don't use your primary care or your pain doctor as your therapist. If you're depressed, have anxiety, yes, mention it, but please seek the KIND of doctor. Keep your medical and mental health care to the appropriate physicians when possible. (Let's face it: its not good to appear mentally unstable in front of someone you hope will prescribe strong pain killers- likewise, you SHOULD seek that support from a physician who CAN help you with mental illness)
And the two MOST IMPORTANT TIPS:
1) BE OPEN MINDED TO TREATMENT OPTIONS.
You should be willing to try everything they suggest if you want your doctor to take YOUR suggestions. Doc wants you to try compound creams? Leg braces? Water-based physical therapy? Fine. But keep your pain journal and insist they keep treating you until your pain is MANAGED reasonably. And if something makes it worse or doesn't help, give it a fair shot before putting your foot down.
AND 2) Have REALISTIC pain management goals;
You will never not be in pain... But setting the goal to be able to get yourself food and drink 90%of the time when you need it, to have pain levels below a 5 at least 50% of the time, to be able to get out of bed in under three hours OR to be able to shower unassisted (even if it means using a shower chair) ... That's not at all unreasonable.
You MAY have to do things that don't feel fair or right; Like being drug tested and paying for it- every single month. Like signing a contract agreeing to random pill counts and agreeing to call your pain management office before accepting emergency room treatment for your pain. You will have to use one pharmacy until the end of time, and not accept ANY controlled substance from your dentist from now on... That kind of thing.
But if you can get your pain under control... It's all worth it.
I want everyone with EDS to have access to the pain control options I have now. I want everyone to have the support I had in getting here but I can't do for you what my husband did for me.
I have long acting and immediate release medications. I have the capacity to be put out-of-my-mind on those WORST days when my hip has been out more than its been in and I can't breathe from the pain. I can force myself to sleep thanks to medical marijuana and the ativan prior to dental work (since the novacain doesn't work) helps me cope. I have a shower chair, a wheel chair, a window ac in my bedroom even when the rest of the house is not on, I have double KFOS (knee foot ankle supports), hip supports, ring splints, a great masseuse and a chiropractor I swear by at least once a month... You name it.
I don't have 10/10 untreated pain around the clock anymore, but I did once... And I did something about it.
You can too, I promise, there IS help out there. Just don't give up.
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?
It's something I've seen a lot lately- Fellow Zebras struggling with the frustration of an illness that is so misunderstood. Many of us will tell you (even after diagnosis) we don't understand the disorder, and almost every person with EDS has experienced doctors who don't understand our condition, or worse, who roll their eyes at our pain, or tell us in one breath that we should have our heart checked and in the next breath, that they don't understand what we're complaining about, that EDS is a "minor" condition.
I personally saw two orthopedists before finding the one who actually diagnosed me- one who told me that the "significant arthritic change" seen between the two MRIs I was given six months apart didn't tell him anything and didn't explain my severe pain, and that was it- he didn't want to see me back, he didn't believe I needed treatment for my pain and he offered no follow up... but believe it or not, the second doctor was worse;
He laughed in my face.
Prior to his laughter, I sat through an excrutiating appointment that my husband had driven me to. I calmly but tearfully explained how I'd gone from being a healthy active cop, loving my job despite struggling with my intolerance to the heat, and how, since my pregnancy, I could barely make it to the toilet twice a day because of how much pain I was in around the clock. I patiently explained as best I could, the severity of my pain, the constant cracking, sliding and popping of my joints. I explained how my hips. shoulders, one knee, and my fingers and toes, were dislocating around the clock from the most minor of movement. He barely said a word during this interview before my "exam". I told him that an orthopedist who no longer accepted my insurance had suggested the cause of my problems was Ehlers Danlos Syndrome, and that my joint pain had severely worsened after stints in the hospital where I was treated with ciprofloxin and levoquin....
And then in one breath he dismissed my pain like I had finally reached the punchline of a long joke.
"First of all," he started condescendingly- " Ehlers Danlos Syndrome is very rare. You don't have it." (Mind you, he hadn't laid a hand on me to examine me, he hadn't reviewed any of my films, nor did he take ANY family history)... But that didn't stop him. "Second - Ehlers Danlos doesn't cause ANY pain, and certainly not the "severe" pain like you are claiming to have." He made sure to stress the word CLAIMING.
At this point, my mouth was hanging open from shock, my husband, thankfully with me for that appointment was speechless. Oh, but he wasn't - he went right on, "And how do you know you've dislocated something?" he chided me, clearly amused. "I wasn't made aware that you have a medical degree."
The Physician's Assistant squirmed, visibly uncomfortable. He was stunned, speechless and glanced at me sympathetically between staring HARD at the floor.. The "doctor" continued to belittle me for several straight minutes, asking questions he didn't allow me to answer and quoting "facts" about how I don't have any of the "physical features of someone with EDS". (He was mistakenly listing symptoms of Marphan's Syndrome, a similar condition that, similar to Downs syndrome, has visible physical traits). He went on to tell me that with no history of heart issues (I remind you, he took no family or health history, so he had no idea I DO have a history of heart palpitations and a diagnosed murmur.)- but he was VERY SURE that I couldn't possibly have EDS. And with that, he literally dismissed me with a wave of his hand and WALKED OUT OF THE ROOM. telling me as he walked out that he had, and I quote, "Real Patients with REAL problems. You know, like broken wrists."
His PA offered some consolation: He did believe my pain was real. He admitted that he knew nothing about EDS and that the "doctor" clearly didn't either. He told me that the doctor "really only deals with things like broken bones" and probably isn't the type of doctor I'd need (understatement of the year!). I've never cried in front of a doctor, but that day I did.
I left frustrated, angry, and I believe that was when I first said it; "I wish I had cancer."
How could anyone think or say such a thing, right? But allow me to explain.
When you are told you have cancer, a doctor sits you down and gives you a serious diagnosis. They generally treat you, and your family, with compassion and understanding that the words they are telling you are about to change your entire life - and quite possibly your lifespan, and most definately, the quality of that life for some period of time.
When you are diagnosed with cancer - 99% of the time, you have a disease with a name and some type of understanding. In the moment that I spoke those words - I was thinking so many things. Here is a discussion of the comparison between cancer and Ehlers Danlos Syndrome. I apologize for my blunt-ness, and please know that in NO WAY am I trying to claim that anyone "wishes" to have cancer, or is down-playing the devastating ways in which cancer destroys lives.
EDS, though, is an ugly nightmare: It has no cure- it lasts forever, it never gets better, but it probably won't kill me.
Cancer VS Ehlers Danlos Syndrome
Seeing Doctors / Recieving Treatment for Pain
Lifespan and Quality of Life Expectancy
- With cancer, generally, you either get better or you die. One doesn't generally develop cancer, and live with it for seventy plus years. Most often after diagnosis, cancer is either treated, or, in the tragic cases, it can't be, or the treatments available aren't successful. Either way, the most common likelihood is that within a few years or diagnosis, you will either be cured, in remission, or have succumbed. Most types of cancer are either flat-out terminal or treatable - but either way, doctors usually have SOME information about what you can expect, both short-term and long-term.
- With EDS, *if you even get a diagnosis* some SEVENTY FIVE percent of the doctors you'll see after that diagnosis will have little to no understanding of what EDS is, how it impacts its victims, how or if there are any ways treat its PLETHORA of symptoms, and many doctors flat-out insist that EDS doesn't cause pain because they can't point to it on an xray. A person with EDS will generally continue to physically deteriorate for their entire life, with new symptoms coming on, and present symptoms worsening or constantly changing. Only one kind of EDS is USUALLY terminal (type 4, vascular, which can and often does affect a person's organs. ) - the rest of us can expect to live a fairly long "normal" lifespan.... most of which will involve constant symptoms and ongoing suffering.
Being Tested and Diagnosed
- You can be tested definitively for cancer. Tumors can be seen on scans and x-rays and some can by physically cut away from the body. No one doubts cancer exists or dismisses it as "minor."
- There is no genetic test for the most common type of EDS (hyper-mobility type - or Type 3 - it can only be diagnosed by completing a physical assessment AND by taking a long, complete medical history and a complete family history. They have to look at the extensive list of symptoms and determine if you have a certain number of possible symptoms *and then* rule out all other conditions that are likely or possible to CAUSE those other conditions - so lots of expensive blood tests, scans, xrays and biopsies, all of which will, with EDS, show doctors NOTHING.. EDS can't be diagnosed on any xray, MRI or other scan, it doesn't show up on a blood test. We don't even know what gene causes the most common type. So pretty much.... good luck getting diagnosed!
Seeing a Specialist
- If you have cancer, you'll need to see an Oncologist. Oncologists are specialists who treat cancer and cancerous tumors - there are THOUSANDS of cancer specialists, and the United States along has THOUSANDS of hospitals as well as entire medical treatment facilities that cater to cancer patients and assisting their families. There are nonprofit pediatric cancer centers where patients and their families receive treatment free of charge through donors and there are thousands of charities raising money for the MANY types of cancer. Cancer is the single most well-funded medical research topic and a cure for cancer is the number one priority of no less than THOUSANDS of scientists. If you have cancer, you can be seen in ANY hospital or by ANY doctor, and there is NOT ONE physician on the planet who doesn't know what cancer is.
- If you have EDS, no one is quite sure what type of doctor should diagnose EDS, let alone treat us. Let's be real - the human body is FULL of connective-tissue, and if your connective tissue is faulty, which is what EDS is, you're going to need a doctor who can treat the symptoms you're dealing with. Wait - did I say *A* doctor? Nope: Try MANY doctors. Oh, and don't forget - you'll have to try to find one who knows what EDS even IS and it's likely they have never even have heard of EDS before you came into their office.
I think that's most of them....
Being Understood / Your Friends & Family
- If you have cancer, you will have the utmost in sympathy from anyone who finds out. Cancer patients are often given the highest degree of respect and understanding because everyone knows how serious and devastating a cancer diagnosis is. No one yells at a balding cancer patient as they walk into chemo treatments from their handicapped parking spot - and you can be sure that your friends and family will LIKELY support you in every way possible. If you look exhausted and sick and tell a perfect stranger you have Cancer, they typically understand immediately your struggle. No one will expect you to "fight through it" - and you can expect to be understood and received with compassion and care most of the time.
- I shared this frustration when I was at my rock bottom-i was pre-pain management, I was in worse pain than child birth, 24/7, and i couldn't take much more.... I believe my exact words were- "If I had cancer, at least there would be an end in sight, death or remission."
If you have Ehlers-Danlos Syndrome, there's a good chance that you look fairly "normal" and many of us, especially early on, do not have any highly visible medical devices. Limping could easily be faking, and when you're not up to getting out of your pajamas, or when you park in a handicapped spot and you're under 50, you can expect to be interrogated by perfect strangers. Your family MAY support you - until you miss a big planned event or fall behind on helping around the house, and then you may find that no one REALLY believes you're ill. After all - no one can SEE broken connective tissue, so how do they KNOW you're really in pain, exhausted, and feeling horrible all of the time? I have the single most supportive husband I've ever met - and even he has occasionally suggested that I should try to "do more" or loses his patience when I've had several bad days in a row and can't keep up with things. MOST people with EDS aren't as lucky, and many of us have very little, if any, actual support from loved ones, since EDS is so misunderstood.
Strangers will very likely have ZERO CLUE what EDS is - so you'll either need to give a long-winded explanation or expect that they simply won't have empathy for your situation. You can expect to hear things like "But you don't LOOK sick!" or "But yesterday you were able to go to the grocery store and lift a bag of dog food, but today you can't even get out of bed?"
- Have you ever heard of a doctor saying to a cancer patient; "Sorry. Not sure who to send you to or if
there's anything anyone can do for you." Hell no. If it's incurable and terminal, at least they can be informed- but many of us are left with way more questions than answers! Cancer patients were some of the first to be granted access to medical marijuana, and in all fifty states, provisions that limit the treatment of people with opiates and other powerful pain medications exempt cancer patients - after all, cancer is VERY painful for many people, and of course that pain deserves to be treated in the best way possible, right? The side-effects of cancer treatments are well-understood even by people who have never known anyone who's had it, because cancer is all over tv shows, movies and in the media.
- Many of our own doctors have left patients to Google "what is Ehlers Danlos Syndrome" after diagnosis, leaving us to imagine the worst, and giving us no direction or support after telling us "Hey, you have an incurable and permanent illness that will never get better and will likely get much worse." Unless you were a big fan of House, you've probably never heard Ehlers Danlos Syndrome said on television, let alone seen anyone in any sort of film who's living with it.
Going to the ER? Or a new doctor? When you tell the doctor there that you have EDS, half of them will roll their eyes at you or flat out say they have never heard of it. Most won't realize that this means certain antibiotics are off-limits, or that anesthesia and pain medications likely won't work properly, among dozens of other concerns they should have about how to treat you.
Many of us wish we could at LEAST have our pain validated by random strangers when we feel our worst, but the reality is that most people will have never heard of our condition or have ANY idea of the plethora of ways it negatively impacts your life. Sorry.
So... What Are My Options?
- Cancer at least, most types, have treatment options. Even if it's not a guarantee- there's a chance surgery, medication, radiation, chemo, could cure you. If you HAVE a treatable kind, but the treatment would be extensive, dangerous, or destroy your quality of life, you have the right to deny treatments and you can choose instead to die. Cancer that CAN be treated, often has a variety of treatments from surgeries to medications, radiation, chemotherapy, transplants, tumor removals, and many many more. When you are diagnosed with cancer, doctors make plans, follow-up appointments, surgery dates. You are offered support services, counseling, and a host of charities offer transportation, funding, even help for your living situation while you're in treatment.
- EDS patients have no options. When you are diagnosed with EDS, Doctors pretty much say "Okay... so, now we know what's wrong. But... why are you here? There's nothing we can really do for you." Many doctors are very hesitant to give pain medications, since many are often ineffective due to our genetic predisposition for them to not work properly - and even the medications that do work only do so for a period of time before they stop... which means that many doctors want to hold off even if your pain is EXTREMELY severe - because eventually, you'll run out of medications to try. There are NO treatments for Ehlers-Danlos Syndrome. The only thing they can do is try to assist with individual symptoms. I know that if many of us could give up a breast, or a limb, or even our reproductive organs or to have major brain surgery, or a very painful bone marrow transplant - we would jump at the chance to be allowed to return to an illness-free life - but none of that is possible. EDS is forever.
- If you have cancer, you can go to ANY hospital, and expect prompt treatment and immediate concern- even if all you are is nauseous from recent chemotherapy. You'll be admitted long enough for whatever treatment you need, and your concerns will be taken seriously.
- If you have EDS, you will LIKELY be treated like a psych patient or a drug addict, almost four times as often as you'll have your concerns heard, your pain treated appropriately, and even when you ARE treated like a human being, there's likely not much that can be done for many of the most common symptoms. Sure, they can reset your dislocated (insert joint here) - but they will likely send you home without pain medication, and that joint may very well dislocate again before you leave the parking lot. Best of luck. :-/
Treating the Mind and Body
- If you have cancer, there's a good chance that your doctors have already spoken to you about things like positive thinking, and may have sent you to a psycologist for an assesment of how you're coping with the news of your diagnosis and how you're handeling treatment. There are yoga groups and massages designed specifically for those undergoing cancer treatments and everyone agrees that spiritual health is so important.
-If you have Ehlers Danlos Syndrome, one of the most common things you'll face first is being prescribed physical therapy- yet most physical therapists want to treat us like everyone else- and things like stretching, yoga, strength training- these OFTEN only serve to WORSEN our condition and pain. Yoga and any stretching can cause pain and worsening dialocations and few doctors truly understand that Ehlers Danlos Syndrome is ALL CONSUMING and affects ALL areas of our lives, so often psycologists are only suggested if they suspect we're exaggerating or faking our symptons entirely! We can tape ourselves from head to toe, wear every splint and brace known to man, get a service dog, handicapped tags, use a wheel chair, a shower stool, but in the end- there's no treatment for EDS. There's pain management for those of us lucky enough to have doctors who care and understand- and there's coping. That's all there is for us.
Sure, it may be a case of "The grass is always greener ". Sometimes, when you are suffering endless frustration, dismissal from doctors, hell, not even a real diagnosis (I'm still waiting, over three years in, for disability income- if it wasn't for family and my husband, I'd have starved to death or committed suicide by now), so I can't IMAGINE how people who are more broke and who have LESS family support are able to handle this disorder. It's no joke.
Many of us suffer, day in, and day out, with severe pain that's akin to a cancer patients' suffering, and when we visit doctors, they tell us " EDS doesn't cause pain " or that were "drug seeking". If you had cancer and asked for pain relief- do you think any doctor would roll their eyes at you or claim you're not actually IN that much pain?
I'm in no way trying to trivialize cancer. Like many EDSers, I'm just hoping and wishing we might be more understood and have similar hope for things to be getting better, instead of just worse. So if you hear a chronic pain patient compare their journey with that of Cancer, please try to understand... it's not that we are trying to say that EDS is WORSE than Cancer -it's just that, simply put- everyone knows what Cancer is. Even little children see commercials and know it's a big scary illness.
It comes down to this - no one wants to have cancer or Ehlers Danlos Syndrome.
All we want is a little more compassion and understanding of what we deal with 24/7.
Footnote: Even if you aren't disabled, being pulled over by the police can be a nerve-wracking experience. If you are living with a disability or chronic illness, this advice may help you avoid spending a night in jail - or worse - as a result of a simple mistake. My goal is to help LAW ABIDING citizens - not to help anyone get out of a traffic citation that they deserve.
How to behave during a Traffic Stop
Part One: Setting up for Success by being prepared:
Before you even see the cop in your rear-view mirror - my goal is to try to adjust your perception of police officers, why they pull cars over, and why they might be stopping you.
By accepting that being pulled over is just a part of driving, rather than believing it will NEVER happen to you - you better prepare yourself for the day you find yourself being stopped. Instead of telling yourself that you are a PERFECT driver, admit that on a daily basis, we all make mistakes, and some times we're the unlucky one who gets spotted when we've broken the rules. Also - it's important to realize that police officers conduct traffic stops for a MULTITUDE of problems, and not all of them are because they witnessed you committing a driving infraction. By preparing yourself from the reality that you WILL one day be pulled over by police, you are already setting yourself up to succeed.
One of the best things you can do to avoid a traffic ticket is to be follow the law! That means having your vehicle registered, insured, inspected (if your state requires it), and having proof of all those things. This also means carrying your disabled parking placard - and the ID card that goes with it from the DMV, plus having your license on you, every time you operate your vehicle. Know what your state's laws are - and make sure all your paperwork is EASY to find, up to date (throw away the last ten years of registrations - it's not needed and it's only going to get in your way of finding the CURRENT one). Check your paperwork every few months, and know when your license, registration and insurance cards expire - even if it means keeping a post-in on the outside of the glove box that will remind you when to change these documents!
Next- realize that while "normal" people tend to think of being pulled over as being a hugely traumatic experience - to a police officer, traffic stops are often just a way of communicating with drivers. We don't have walke-talkies, and if you did something wrong, we can't call your cell phone and remind you not to blow that stop sign tomorrow. It isn't necessarily about about writing tickets, or lecturing you and NO normal healthy police officer does traffic stops with the intention of causing fear- It's literally the only way to tell a driver to slow down - or sometimes more specifically; "Hey, back there, we have had a lot of residents complaining about drivers failing to slow down, so we're pulling folks over to let them know that they missed the speed limit changes" - I agree that NO ONE likes to see the red and blues in their rear-view mirror, but at the same time - I hope these tips ENSURE that you don't actually receive a ticket.
Sadly, some people take things very personally and give the officer an attitude the second they are pulled over -and while many officers are calm, fair, reasonable people - it's easy to see why they'd turn around and write-out a ticket to someone who is rude or nasty to them, even if originally they'd only stopped to give a verbal warning. No one likes to be yelled at, called names or verbally abused, and in society these days, officers are more aware then ever of the danger they face during every traffic stop. Don't give an officer ANY REASON to think you may want to harm them. No matter how angry or upset you are- the side of the road is NOT the place to show that.
MOST police officers are already NINETY PERCENT sure that they are writing a ticket VS giving a warning, at the time the stop is conducted. So often - your following these tips could literally be the thing that saves you from a citation - or - your negative behavior could totally change an otherwise forgiving officer's formerly calm and peaceful mind, We (police officers) call those citations "contempt of cop" tickets - as in - the law you broke wasn't so much the problem, but the attitude you gave the cop WAS. I'm not saying it's right, but it's VERY common. It pays to be polite to the police, even if you don't believe you've done anything wrong.
Part Two: Be Genuine & Polite - Anything Less is Asking for Trouble.
Sadly, a lot of people go into situations PRESUMING police are going to ticket or arrest them, and they end up acting in a way that basically ensures that IS the outcome. There are a lot of things people can do to more or less wipe-out the changes of going to jail - or to make the chances of leaving a traffic stop with a citation as slim as possible.
It's all about the attitude you have going into it. Think about it - have you ever gone to speak to someone - your boss - a manager at a store - anyone in a position of authority or power, and had them IMMEDIATELY be very negative before you've even had the chance to speak a word to them? Very frustrating isn't it? Perhaps you only wanted to say "Good Morning" - but your boss is already ready to bite your head-off, complaining about the weather, your late report from yesterday, etc etc.... it's awful. Traffic stops (ANY interaction with police really) - is the same. Don't ASSUME things are going to go badly - that the police officer is angry or a jerk, or that you are doomed. By being so negative, you are SETTING YOURSELF UP TO FAIL. Try to take five deep breaths before you even open your mouth, and realize that remaining calm witll have a HUGE impact on the officer and the way he treats you.
Do you want the police officer to understand that you have a disability that affects your disability? Do you have trouble communicating - listening - or understanding things that are said to you? Do you have a form of autism, an anxiety disorder or trouble hearing in one ear? TELL the officer politely.
MOST officers, if you explain up front, that you have - for example - an auditory processing problem and ask them POLITELY to give you extra time to process what they are saying - and maybe ask questions to better understand them - MOST would be willing to help you out.
This need for understanding goes both ways however: You need to keep in mind, and understand that on the side of the road- it's VERY dangerous for an officer to be out there. So maybe instead of slamming on your breaks as soon as the officer lights you up (PLEASE don't do this -EVER) - instead,you should signal - change lanes to the far right lane, then slow down, signal your intentions to pull over, and then pull over on a side-street, or into a parking lot. If you ARE on a major highway or VERY busy road and there are no exits in the immediate future- pull as far off the road-way as you can, into the grass even, so that when the police officer approaches your car, he doesn't have to stand in the roadway or near speeding vehicles to do so. That kind of thing will make an officer a lot more at-ease and safer. In turn, an officer who is not standing in traffic is more likely to be less anxious during the stop - and therefor less likely to write the ticket - see how easy that is?
The last part of this section is be GENUINE. If you want an officer to respect your disability, explain it in a clear, understandable way. It is okay to cry if you are genuinely upset- but do not expect pity or expect leniency because you are hysterical. Try to remain calm, and BE HONEST. If the officer asks you if you know why he stopped you - and u you DON'T - it's FINE to say "Honestly officer, I am not sure why you pulled me over this evening" OR "Yes officer, I realize that I was doing about fifty five miles and hour and the speed limit is actually forty five, I'm sorry." Apologizing - if you are sincere, is a nice touch. If you aren't sorry - don't say it. Being insincere is very transparent.
Part Three: The BIG CRINGE - You're being pulled over. What to do.
If you are prepared (your vehicle is registered, insured, inspected, etc - your license is valid, and your paperwork is handy and accessible, please take a deep breath. You are already ten steps ahead of the general public, and already have a great advantage. Say it to yourself: I'm not going to get a ticket. Now take a DEEP breath - and follow these steps:
1) As soon as you see an officer in a marked or unmarked patrol car behind you - signal that you are going to change lanes - and then, switch lanes - always move one lane to the right.
Often times they are NOT actually intending to pull you over, but have come up behind you as they are in a hurry, and its COMMON for a police officer, in a hurry, to suddenly appear behind you. REMAIN CALM: They may simply need to get around you to get where they are going. DO NOT SLOW DOWN or BRAKE.As a police officer who has been rushing to important calls (not all calls authorize the lights/sirens) - there's nothing worse than getting behind someone in the fast-lane that slows waaaaay down and proceeds to do ten miles UNDER the speed limit in the LEFT LANE. Just get out of the way. PLEASE. There is a GREAT chance the officer just simply wants to get where he's going. Don't move over MORE than once. If you change lanes, and then officer changes lanes behind you, don't keep changing lanes. If he moves in behind you, there's a good chance he's running your plates. Just do the speed limit, and keep your eyes on the road. Do your best to remain calm.
2) Prepare yourself - it might be your turn to be pulled over. Say it to yorself: It's not the end of the world. I'll be okay.
If the officer pulls out of a parked position and pulls in behind you, OR pulls beside you and appears to match your speed or continues to follow you after you have changed lanes or turned onto a new road, OR god forbid- ACTUALLY ACTIVATES his lights and/or siren:
A) Turn on your turn signal
B) SLOW DOWN but do NOT slam on the brakes
C) Look for a safe place that is reasonably close
NEVER EVER EVER get out of your car, for ANY REASON.
3) Stop your car in a safe place, in a reasonable amount of time.
Again - look for a side-street, or an area with a decent sized break-down lane. If there's a driveway of parking lot of a business, signal to let him know ryour intention - slow down to a crawl so he knows that you INTEND to stop.Choose an area with slower traffic, or that allows the officer as much room between your driver-side door and speeding traffic. Again: Unless instructed to - NEVER EVER open your car door, or get out of your car during a traffic stop.
4) Once stopped- roll ALL your windows down, turn the radio volume off- turn on your interior light (if its dark) - and sit - motionless- with your hands on the wheel. If you were on the phone (legally or not) - HANG UP. Do not make any calls during the stop, not even to your parents or spouse - it's very rude. .
You would be surprised how common it is for people to make a phone call in the short amount of time between being lit up ,and being stopped - people do it and they do it OFTEN, but it's VERY rude. I can't tell you how many times I've had drivers speaking to someone on the phone instead of ME at their window. I've had people as old as 28 try to put me on the phone with their spouse to explalin the ticket (just... NO. Don't ever do this). You should NOT be talking or texting while driving - don't do it during a traffic STOP either. It's incredibly rude and very much looks like you are not even remotely apologetic about breaking the law.
Ask ALL passengers to sit still and not to speak unless spoken to - and just keep everyone's hands visible. DON'T put them in the air - that's silly and unnecessary- it also looks like you are mocking the officer and the seriousness of officer safety. Just make your car interior completely visible, and remain calm and still. If you are alone, take a few deep breaths. being stopped is scar, and you are doing VERY well. Just remain calm. It's okay to cry if you really are afraid, but try to do so as calmly as possible. If you have passengers, ask them to remain still and quiet and not to speak unless spoken to. Your passenger ABSOLUTELY can cost you a ticket if they are rude or act in ways that make the officer nervous or suspicious.
5) Address all officers as "sir" or "ma'am" - or simply as "officer".Remember to be polite and genuine.
Don't be so fake-polite that you come across as hostile or snotty. Saying "Yes sir" is polite.Using SIR in the sentence fifteen times come across as very sarcastic and in-genuine. You know what I mean - MANY people "yes sir" us to death and when you do it in a condescending manner, it's quite obvious.
6) Don't start looking for, or getting *anything* (license, registration etc) until it's asked for.
It is entirely possible that the officer will approach your car, tell you that your tail light is out, to drive safely, have a nice day, and will walk away. Don't deny him that opportunity by preemptively looking for paperwork. If the officer was looking for a suspect vehicle that matches yours, but the suspect is male (and you are female)- he may realize this once he gets close and tells you "My apologies, wrong car" and then let you go. NOT ALL TRAFFIC STOPS require paperwork, so don't go getting it out before it's asked for.
NEXT- IF and WHEN the officer does ask for items, explain to him WHERE the item is that he is asking for, then get it. For example; Say "I'm going to get my insurance out of my glove box, and my license is in my purse." - then get it. Having these items HANDY and not making the officer stand near 70mph speeding cars while you search for two hours through sixteen years of registration (throw that old crap out!!) - will go a LONG way towards your NOT getting a ticket. This goes back to "be prepared" above. Know where your items are, and keep them together, in an envelope in your car. Also - but this should go without saying - if you travel with a weapon, or medications - NEVER keep these items in the same location as your paperwork. So don't keep your wallet or purse with your ID in your purse full of medications. And don't store your gun in your glove-box with your insurance and registration. Just.... DUH.
7) If it's relevant to the traffic stop, or towards your communication DURING the stop, explain that you have a disability (The short version - no need to give your life story or complete medical history - this is NOT the time or place)
Again,DO NOT GET OUT OF THE CAR FOR ANY REASON unless you are TOLD TO by the police officer. If he tells you to get out, make sure you ask EXACTLY where he wants you to go, and do exactly what he asks. Again, it's okay to CRY if you are scared- but don't work up fake tears. Be genuine and honest. Don't exaggerate your injuries or disabilities, and there's no need to tell the police officer your entire medical history if none of it is relevant to your situation. If you were speeding because you just got bad news from the doctor and you weren't paying attention - THIS is relevant. If you were speeding because you have a lead-foot - don't bring up your disability.
DO: "I'm sorry officer, I have autism and I have a difficult time understanding people when I am upset or nervous and I'm asked too many questions. Could you please ask questions one at a time and or seak slowly? I am very nervous/upset because I have never been pulled over before.(Don't say this if it's not true! It's very easy for the officer to see your driving history!!)
DON'T: Sob hysterically, yell at the officer or get overly animated or loud for any reason, tell him a bunch of irrelevant medical history especially if your idea is to cause him to be sympathetic. Don't be dishonest or exaggerate. If you're really speeding because you have IBS and a really bad stomach ache - share that info - but don't make crap up. Literally - don't do that. Don't ask for a warning. Don't whine. Don't be demanding. Don't be irrelevant -this isn't social hour. Don' ask for the officers name and badge number (you can easily get that later from dispatch on the phone if you feel its necessary). Don't complain or argue.
8) TRY to remain as calm as possible during the duration of the stop. Same with your passengers.
Seriously - the officer could be stopping you because you match the description of a car carrying a missing 70 year old grandmother - or he could have pulled you over for speeding. But either way - remaining as calm as possible will help ensure that your communication is fully clear, and that your situation is resolved quickly and peacefully. He may very well have stopped you for a traffic infraction, but most officers write three times as many warnings as they do tickets, so remain calm, polite and honest and keep positive. If you are friendly, honest and non-threatening, there's still a good chance you'll leave with no ticket.
Why do I keep telling you NOT to get out of the car? First - its unsafe. There's traffic, and many people have been hit and killed by cars during traffic tops. Secondly, existing your car for any reason during a traffic stop - ESPECIALLY if the officer is in his or her car - is VERY threatening. If you've ever watched COPS or any videos of police officer involved shootings, you'll see that this is very often the beginning of a traffic stop gone VERY VERY wrong. When officers are shot during traffic stops, its very often by someone who exited their vehicle. The ONLY time you should ever open your door is if your window is broken and you CAN'T roll it down - even then - gesture to the officer and loudly say "The WINDOW is BROKEN - I need to OPEN the DOOR so I can HEAR you." - and even then - only crack the door open to communicate - don't open your door fully. Make sure any passengers are clear on this - them opening their door could SERIOUSLY frighten the police officer and cost you a ticket.
9) Ask questions if you don't understand what's being said to you - and it doesn't hurt to apologize as long as the apology is genuine - but DO realize the side of the road is NOT a court room- it is NEVER the place to argue over the legitimacy of a law, or to debate any portion of the reason you were stopped
If you ARE getting a ticket, just close your mouth and say as little as possible except for answering questions you're asked. If you go to court, realize the entire interaction is likely being recorded on the dash cam / body mic and everything you say may be played back - so LESS is MORE.You do have the right to video-tape the stop, however, i wouldn't hold your phone up or be obnoxious/obvious. There's no reason you can't start your camera rolling and allow it to pick up the audio of the stop from your lap or arm rest -but don't fiddle with the phone while the police officer is talking to you - it's EXTREMELY rude - and no matter how young you are - DO NOT make a phone call to mommy and daddy during the traffic stop. I can't say this enough.
If the officer IS writing you a ticket, just accept it, and realize that you DO have a time and place where you can dispute the ticket - it's court -you have an option for a court date. I realize NO ONE likes to get a ticket. Hell, even AS A COP, I've gotten tickets myself, and it SUCKS, but just accept that it's part of life and driving, and if you DID commit the infraction - try to drive safer and accept that the officer MAY have saved your life or someone else s. And if you DIDN'T commit the infraction - then you can go to court, and have your day in court, and explain your side of things. The roadside is NOT the place, and ARGUING will ALWAYS make your situation worse. It's fine to EXPLAIN or to answer any questions the cop asks - but don't get argumentative. It will NEVER help- even if you're right.
It is likely that the officer will tell you this verbatim: If you feel that you have received this citation in error, please contact the court office at the phone number listed on the citation and request a court date (If the citation is for a criminal/misdemeanor infraction, you'll have a MANDATORY court date on the ticket - he will tell you this). If you have to take a ticket to court - please contact me atRedandBlueNights@gmail.com use the SUBJECT: Traffic Ticket Dispute - tell me your side of t he story, send me a copy or photo of the ticket, tell me what law you were charged with (the exact criminal code # will be on the ticket) and tell me what state the ticket was written in. I'll try my best to give you advice as to weather or not you have a case worth making, or weather you should just suck it up and pay the ticket. I hope this helps relieve some stress! I'm NOT an attorney - just a former cop with a LOT of traffic court experience. :-)
10) Know your rights. If the officer asks if he can search you car, please know that you do not have to consent to the search.
The 5th amendment says that traffic stops must be "reasonable" - keeping you for a ridiculous amount of time is against the law, so if you are stopped for a simple traffic infraction - the law states that you shouldn't be kept on the road-side for more than 15-20 minutes or so. The 5th amendment also protects us from unreasonable search and seizure - this means if you say no to a search of your vehicle, police can have a trained K-9 walk the perimeter (if there is a trained K9 in the area or not far away who can respond quickly) - If you have any illegal drug in your car, or it's BEEN in your car in the recent past, I can't help you (and no offense, but i don't want to - that's not the point of my writing these tips). You do not HAVE to consent to a vehicle search - however - if you aren't doing anything illegal and you have nothing illegal ON YOU, the majority of people DO consent to the search in my experience. Also - just from experience - the large majority of people who DO NOT consent to a search - wind up having something illegal in their vehicle. Take this as you will - but if you do not consent to a search - the police will likely be suspicious. It might not be fair..... but it is what it is.
From my personal experience - we always handed a person their ticket or written warning BEFORE asking for consent to search. Many people who were quick to say "Sure, no problem, you can search it" - we would often then thank them, and tell them not to worry about it, and send them on their way. Sometimes police officers ask to search in some kind of mind-game and they dont actually mean it. Isn't that strange? Also, sometimes we would do a quick search, and then often send the person/people on their way.
I am going to write an ENTIRE separate blog post about drug possession - prescription drugs and how you have to carry them legally - and how to keep your prescription medications safe and legally carried - but this is very relevant.If you are carrying ANY prescription medications and they are NOT in their original bottles.... or if you are carrying anyone else's medications, or if you have marijuana and your state does not LAWFULLY allow medical marijuana or there is ANY doubt whatsoever about the legality of anything within your car - please realize that consenting to a search could very well wind up with you spending the night in jail. This goes back to the beginning. And being prepared - please always carry your prescriptions in their correct bottles OR with the pharmacy paperwork - never combine pills - even of the same type - because if your current prescription is for 30 pills and you have 42 in the container - you COULD be charged for every pill above 30 that you possess. (I'm SERIOUS). While MANY disabled folks carry their spouse's medications - please realie if your spouse isn't in the car, and these are controlled substances -you can literally be charged with multiple felonies. KNOW your rights, and keep this in mind,.
11) After the interaction - with or without a ticket - secure your paperwork/items back where they belong - put your seat belt back on - thank the officer (even if he wrote you a ticket, because I assure you - your politeness will look REALLY good in court if you decide to take the ticket to court) - if you can't stomach thanking a police officer who just wrote you a ticket, try something like "please stay safe tonight").
You do not need to wait for the police officer to leave- he may actually sit in his car for a while at that exact location, so don't feel the need to wait around. . As soon as he tells you that you are finished, and gives you back your items and your warning or ticket, you may go, If you are unsure, ask him. and then pull over somewhere safe at your first opportunity to calm down, review what happened in your mind, take a break to let yourself settle down, before continuing your trip
By doing the above, you will SEVERELY reduce your chances of getting a ticket, or worse, going to jail - even if you *have* committed a terrible driving infraction.
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!
I was 29 years old when I became pregnant - the specifics of the situation are a story for another time, but at that time, I was, by all accounts, a fairly healthy and very active person. I was a police officer, I raced BMX on the weekends, I rode a motorcycle regularly and went horseback riding every Sunday morning. I had a lot of "little accidents" and bruised easily plus I suffered with an unusually weak immune system, and I had lots of small things that seemed odd for someone my age - but I never would have dreamed that I would one day be completely disabled because of something I'd had all along.
It wouldn't be fair to say that being pregnant CAUSED me to become disabled, but had I not become pregnant, it's impossible to know if i would have ever been seriously affected by the Ehlers-Danlos Syndrome, especially to the extent that I am now. I may have gone through life just being sick more than the average person, being unable to tolerate the heat, and having an unusual number of "little issues" here and there with my health.
I didn't want to have a baby- I had never wanted kids, but all of that is an entirely separate story. Regardless, by the time I was nine months pregnant, my best friend was doing the best he good to take care of me as the swelling (of my legs and feet) had gotten so bad I could barely walk and all I wanted was the baby O-U-T. When we had gone to the hospital to have the baby, my birth plan was a scheduled c-section but my baby plan was open ended... I was fairly sure my son would be headed to an adoption agency as my life-plan had never included children and I had no intention of being a single parent.
During my pregnancy, I had moved to my home state of NJ to be with family - and with my best friend who I came home every other month or so to see during the ten years I'd lived in Florida. How we didn't know that we'd one day end up married neither of us can figure out in retrospect... and even though we never technically dated (about a week before our son's birth we discussed that by entering a relationship we were basically acknowledging that we were planning to get married - hell, hadn't what we'd been doing all that time we'd spent together over 14 years essentially been dating without the kissing and whatnot? Anyway, he is Kaedin's father, and he had been his daddy since our son was the size of a lima-bean growing in my belly even if we didn't actually know we'd choose in the end to become his parents.
Justin also had never wanted kids, I was dead-set against them, and despite our being the best friends for fourteen years, it wasn't until I moved home pregnant and in crisis that we fell in love... right there between the morning sickness and my ever-expanding mid-section, somehow it happened. The first time he told me that he thought I was beautiful was a slightly sideways comment about how pregnant women can be really beautiful. I got what he was throwing out there... neither of us had ever been the mushy type - after all, we had been platonic besties for over a decade, but somehow it worked.
And as it turned out, he is the most amazing father in the world - like I said, he was, even before we knew we'd be parenting the little munchkin. He was incredibly supportive, from foot rubs and staying up all night with me when I was feeling really awful to emotionally supporting me through the entire crisis that had caused the pregnancy in the first place. But my amazing husband (he's my husband now, he wasn't yet then) isn't what this blog is about... this is all about how my pregnancy caused me to become disabled.
Despite his best effort to keep me smiling and get me comfortable, even all of the foot-rubs, and back-rubs (Not to mention and how amazing to go from scared, alone and pregnant to having the most wonderful man in the world supporting you through a rough pregnancy ALL all the emotional trauma to boot), I was still getting more and more uncomfortable.
He would hold his hand on my ever-expanding belly to feel those insane kicks (and the hiccups my son had for almost an entire month before he was born!) and it was truly amazing to know how loved we both were - but still, I was in a LOT of pain by the time the 9-month mark rolled around. I hadn't gained much weight throughout the entire pregnancy (in retrospect, thank god for that!) - but all the sudden at eight months, it looked like I'd swallowed a basketball.
Due to the traumatic nature of my pregnancy, sadly, there are few pictures the documented the journey, so you'll have to take my word for it, but at seven months along, I was still getting the side-eye whenever I'd park in the "expectant mothers" spot, and yet less than a month later, right around Christmas, everyone (including myself) was quite positive I would burst at any moment, possibly with twins! So when the day finally came (and yes, we made the decision to keep our son and bring him home while daddy was holding him in the middle of my tubal-ligation... the big emotional mess of a decision I'd made as a kick-back from the trauma of the pregnancy in the first place...) - I thought that all that back pain, leg pain, etc would finally end.
I went home on pain-killers - for about ten days after my c-section and during that time felt pretty great. Of course, much it it was probably the fact that I was now engaged and in love with both of my amazing men... I remarkably feeling well for someone who had just had a human being ripped from their abdomen and I was actually up walking around quite a bit just hours after our son was born.
I had remembered the horror stories from my sister in law who couldn't walk for days afterwards, but none of that was the case. In all reality - had my digestive system responded better to the dilaudid, I probably could have gone home that next day, but instead we got snowed in and spent six blissful days with nurses and catered meals and we all snuggled together and slept in my hospital bed. (It's a pretty weird way to start a marriage, by the way... his family was all "So... you're not coming home after work because you're at the hospital with your new baby.... um....)... but again, THAT is a whole other story. :-)
Our First Family Photo (1/24/11): I was crying. Right before this photo was taken, my then fiance brought the baby over for my first look and said to me, "I think we need a car seat." Until that point, we hadn't decided that we would be parenting vs. my placing the baby for adoption as I'd been planning through my pregnancy, so this picture is incredibly special to us. I was so incredibly blown away that my best friend had fallen in love with our son so completely before I'd even had a chance to lay eyes on him.
The problem wasn't my body wasn't the c-section or the recovery afterwards, what actually "upset" my faulty collagen had started long before the surgery as my body was moving through the stages of pregnancy and preparing for labor. All the low-back pain and hip problems I'd been writing off as pregnancy-related weren't actually -they were foreshadowing.
The problem began to show itself in the weeks after the birth when the low-back pain from the pregnancy (it had crept up right around the eighth month) had never gone away... by early summer it had gotten so bad I was at my GP asking for pain medication and MRI and x-rays. Disappointing and confused by "minor arthritic change" being the only notable thing, I couldn't understand why my pain was only getting worse. And spreading. It seemed like my knees, my ankles, my shoulders... one at a time, every joint in my body was starting to slip out of place, to sit funny - I'd dislocate a hip during sex (sorry for the TMI, but I promise, no one was more traumatized than we were!) - I'd step down a step only to find that my ankle had slipped out of place and end up in a heap on the ground.... something was very wrong and it wasn't related to my now months-gone pregnancy. By now my son was standing on his own, and I was becoming less and less able to stand on my own, even sitting up for long periods was excruciating. While he was having tummy time, all I could do was lay flat on my back on a heating pad, taking twice the recommended dosage of Advil and nothing was helping.
Finally, almost a year after my son's birth- after various referrals and two orthopedists who told me that nothing was horribly wrong with my back, I saw an orthopedist who was able to give me some REAL answers. (For the record, my husband had already come to the right conclusion) But for me, this was a real specialist, who I really trusted, who could explain what no one else had figured out: I have Ehlers-Danlos Sydrome, Type III. Otherwise known as Hyper Mobility Syndrome, it's a genetic condition that causes faulty collagen, which is otherwise known as the glue that holds us all together. So here I was, feeling as if I was coming apart at the seams... and I really WAS! As upsetting as it is to have a genetic disorder and no hope for a cure - everyone I know who has been diagnosed to this day is just glad that they finally have answers.
Being told that it's not real, that it's all in your head - it's demeaning, it's downright abusive. To have doctor after doctor treat you as if you are a head-case while your body is being racked with such severe pain that your quality of life is becoming non existent, you just don't understand what that's like until you're living it. I was just glad to have something I could go home and Google, to read about, to learn about, to learn to cope. The first stage of accepting this condition is knowing you have it - so at least I had that.
And for the record, I really have to thank my orthopedist Dr. Levy from Sprains Strains and Fractures in Cherry Hill, NJ because he's an amazing person and he really may well have saved my life, because up until the point where I started getting proper treatment for this incredibly painful condition, it was not looking good for me.
I spent the first few days after the diagnosis in tears- at first I was terrified I had Type 4 (Vascular EDS, which is often deadly) - I do not, I have type III. But still -this has no cure. It's a lifetime of pain. The dislocations will never go away, they will never stop - surgery won't help. This is a condition you manage and learn to live with - but it's not something that you can change because it's faulty genetics. And worse... I could have passed it to my son. But now you know the end of the story, and you didn't really find out HOW I went from being a healthy happy 130 lb police officer to a 185 lb disabled woman with a three year old son... so let me explain how pregnancy (and later, an inept moron of a doctor at Virtua Hospital in Voorhees) destroyed my body...
(but first let me say... even had I known that this would be the outcome... we wouldn't trade our son for the world.)
HOW PREGNANCY CAUSES EDS SYMPTOMS TO GO AWRY ...
The relaxin hormone floods a woman's body at the end of pregnancy to prepare her hips and pelvis for birth - unfortunately that hormone loosens up ALL your joints, not just your hips and pelvis. A healthy women's body will slowly tighten back up, and her lax joints from pregnancy hormones will slowly go back into their normal place after labor as the healthy collagen does it's job after the pregnancy is over.
Unfortunately, my defective collagen couldn't help my body go back to where everything belonged. The pregnancy set me up for a lifetime of joint dislocations each and every time I move, even ever-so-slightly, the wrong way. If I reach for something in front of my, my shoulder can drop out of the socket. When I roll over in my sleep, my hip often slides in and out of socket more times than you flip your pillow to get to the cool side.
Every joint in my body regularly dislocates, except oddly, my elbows, which seem to have remained free from the effects of my hyper-mobility. Everything else in my body is affected; my jaw broke during surgery to pull my wisdom teeth, my fingers dislocate from typing, writing with a pencil is physically painful, my wrists snap from picking up my cell phone to look at my text messages, toes slide out of socket and are so cramped and painful the only way to put them back in place is to get on my feet and apply pressure to them with my whole body to "re-set" them into place, my ankles drop if I try to run (that's a joke - trust me, there's no running going on here!), my knees dislocate from staying bent on an airplane or at a movie, and more than anything, my hips.
My hips are why I walk funny - they are why I'm in horrible pain as i type this blog, they are why I can't sleep, why my back is constantly a huge tangle of painful knots.
My hips are the bane of my existence... That's what the collagen disorder, EDS Type-III is, after-all. As a child, they put these awful bar-shoes on my feet to try to stop me from "toe-ing in" as they called it. Doctors told my parents not to worry and that I'd "outgrow it" and not one specialist was concerned that I can rotate my feet well over 180 degrees inward, even walking with my feet facing forward and backward at once. Here's a photo to illustrate. And here's one that shows what I can do standing up...
It's quite typical for woman (and their doctors) to only put together all the puzzle-pieces of a lifetime of "little things" together after a pregnancy, when all the damage done by the relaxin begins to cause chronic pain. And that's what happened to me.
HOW LEVOQUIN AND CIPROFLOXIN CAUSED ME PERMANENT INJURY AND A LIFETIME OF PAIN...
One of the biggest things that contributed to my life-long battle with chronic-illness (in addition to the pregnancy that triggered the onset of severe symptoms) - was 100% the fault of Virtua Hospital and the HORRENDOUS admitting doctor who was put in charge of my care there. (*Please see the foot-note to this story) That's a story for another time, but I promise I'll tell it.
There is some debate about the facts - but this we know for sure: Shortly after my son's birth my husband and I both were diagnosed with Mono (well, to be fair, he had Mono, I was battling with the Epstein-Barr virus as I have immune system issues we didn't yet know about). My husband became jaundiced and was hospitalized, I had an IV infiltrate and and had a serious issue with cellulitis I began to battle with nearly permanent urinary tract infections and kidney infection symptoms.
I had sharp pelvic and abdominal pain, pain in my low back near my kidneys, burning and the constant feeling of needing to pee.... it was never-ending and so severe that I went to the ER nearly a dozen times because absolutely nothing would reduce the pain short of IV morphine or dilaudid. It became unbelievably bad during my periods, after sex, after bathing, swimming... I did everything possible to avoid UTI's - literally followed the handbook to a T - including giving up sex for quite a while despite the fact that I was newly married and very much in love. Nothing I did helped.
I was admitted to Virtua Hospital more than nine times in the year after my son was born, and several more times in early 2012. During the first few hospitalizations, I was told that I had MRSA in my kidneys... MRSA is a HIGHLY infectious staph infection. It HAD to have been given to me during a cathaterization... and up until that point I'd had exactly ONE catheter in my entire life: DURING MY C-SECTION... at Virtua Hospital. Isn't that nice? I was treated like a bio-hazard. Everyone who came into my room suited up as if I was an E-Bola patient and even friends and family were supposed to wear gowns, masks and gloves to come see me. My newborn child who I'd care for at home, skin to skin, I was told was not allowed to visit me in the hospital (they got WW-III about that, and I won, btw.) I missed my own baby shower (it was after my son's birth) because I was in the hospital, and I was in quarantine, so they wouldn't even let me guests visit me.
So the onslaught of antibiotics started. They pumped me full of antibiotics and I never began to feel better - only worse. The only thing that ever seemed to help the UTI symptoms was over the counter AZO (which I still use to this day on a regular basis) - even the various antibiotics didn't keep the infections at bay for more than a week or two. Some of my hospitalizations were LITERALLY just days after I'd been released. I was repeatedly treated with two strong antibiotics: Levoquin, and Ciprofloxin.
Each time I would get a bag of IV antibiotics, the pain would come. I felt as if they were pumping wet cement into my body and it felt as if every joint was hardening to a solid. I felt like I couldn't move - the fire-y pain that shot through my veins was worse than the broken jaw, worse than third degree burns, WAY worse than the c-section, even worse than the bowel impaction and intestinal tears I'd survived... it was HELL. I reported to the nurses my horrible pain. Occasionally a doctor would up my dilaudid from every 6 hours to 4, or add Vicodin on top of my morphine, but nothing was ACTUALLY helping. I was just getting sicker and no one knew why.
I'll tell you another time about the world war that went on between the doctors and I, but suffice to say that if a hospital can't explain your symptoms, they have two responses...
1) They'll tell you that they don't believe you're actually sick because your symptoms "don't make sense" or because nothing you're complaining of is showing up on their tests.... and they'll discharge you, even if you have VISIBLE symptoms, such as bacteria or an infection they can confirm.... they'll discharge you, after having you on anti-inflammatory medications, pain medications, antibiotics, probiotics and ran a whole bunch of tests.... and they'll send you home with NOTHING. The hospital will flat out tell you that they don't know the answer and that they "can't keep you here forever" and will simply send you home with NO answers.
2) They'll imply that perhaps you have a mental illness, that the pain is in your mind, or worse, that you are simply there seeking pain medications because you are a drug addict. I repeatedly told the doctor after being trearted with antibiotics that I was experiencing SEVERE and worsening pain... and in response, the admitting doctor flat out accused me of "drug-seeking behavior" claiming that my report of pain made NO sense and COULDN'T be true. (*Please see the foot note below about the serious affects of the Fluoroquinolone family of antibiotics.)
*I was accused of this once - by the same idiot doctor I mentioned above and in the blog post (here).
Why? Because at the time, in her words "No one being treated for a kidney infection SUDDENLY has sharp severe pain in her hip, shoulder and lower back. It makes no sense." Seven months later, a black-box warning was added to the Fluoroquinolone family of antibiotics- including LEVOQUIN and CIPROFLOXIN. Read more about this in the footnote or (here).
Basically what it comes down to is this- SEVERE PAIN as a side-effect of those antibiotics is a sign that something is VERY very wrong. And she continued to treat me with those same drugs, over and over and over, all the while, claiming that I was "over reporting" my pain and wasn't being truthful. In the end, her ignorance and ignoring my reports of pain, ended in PERMANENT damage to my joints, throughout my entire body, that I now have to live with forever. .
** Footnote Regarding Fluoroquinolone Antibiotic **
Approximately 7-9 months after I was accused of lying when I reported severe pain during and after IV antibiotic treatments - the FDA released new Black Box warnings about the SERIOUS dangers associated with these antibiotics. Here's the information from the FDA.
Warning: Fluoroquinolone Antibiotics May Cause Permanent Nerve Damage.
“The U.S. Food and Drug Administration (FDA) has required the drug labels and Medication Guides for all fluoroquinolone antibacterial drugs be updated to better describe the serious side effect of peripheral neuropathy. This serious nerve damage potentially caused by fluoroquinolones may occur soon after these drugs are taken and may be permanent...
Peripheral neuropathy is nerve damage in the arms and/or legs, characterized by “pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or sense of body position.”
Due to their tremendous health risks, fluoroquinolones should be reserved for treating serious bacterial infections that won’t respond to any other treatment, when the patient is made fully aware of the potential for serious adverse events. Instead, they’re often inappropriately prescribed for mild conditions like sinus, urinary tract and ear infections.
In fact, fluoroquinolones are among the most commonly prescribed antibiotics in the United States. I highly recommend you take pause before filling a prescription for these drugs, especially if you have a “routine infection” that has not been treated by other agents that have a safer side effect profile.
You should not expose yourself to this degree of risk unnecessarily! The dangerousness of fluoroquinolones definitely warrants some serious discourse with your health care provider about whether they are really necessary, versus safer treatment options.
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.