I wish there was a way to let people know "you should look for all these weird symptoms" and "If you're finding that all these strange things are happening to you - you MIGHT have Ehlers-Danlos Syndrome" - while the EDNF site is really good, much of the symptoms listed are just medical terms,and not necessarily things people can relate to.
I know there's a lot of things MANY of us have, but it doesn't seem as if doctors have 110% connected it to our EDS.... like Keratosis pilaris (red bumps on your skin on your arms and legs most often, which can appear purple when you're cold - it's common among EDSers). I'm trying to catalog all my problems from head to toe...I hope it will help my doctors (I'm planning to give it to them), plus, I'm hoping you guys reading who suffer from EDS can help do the same, so we can make a generalized "If you're noticing that you have a large number of these problems, you might want to talk to a geneticist."
Here are the things I've come up with from a thorough evaluation - but this list isn't complete and I'm sure I'll be adding things as I remember them.
My EDS related symptoms - from head to toe - starting with things noticed when I was a baby:
As a Baby:
-I was born with hips that seemed to have no natural stop - they were extremely floppy and could bend in every direction. By the time I could stand, i could and would often rotate my legs inward almost 360 degrees. I can STILL do this.
-I was very ahead of my age physically. I never needed my head/neck supported as an infant bc i could hold it up myself. - as a baby, I had incredible strength and could hold my head up and do push ups. I stood at four and a half months, pulling myself up, and then walked at barely over five months.
-(I've noticed a large number of these things in my son who is now four - he was incredibly ahead- crawling from the foot of our bed to the head at only 13 weeks - and the day he was born, he could lift his entire top-half into a push-up position and look ALL over the room, holding himself up for minutes. It freaked out the OBGYN so badly, he at first thought the baby he was seeing in our room WASN'T the one I'd just given birth to downstairs. He called in over a dozen people to witness the super-human baby whose head/neck and arms were SO strong.
-I was always a very advanced learner. Spoke in full sentences before 18 month, was reading full books by three,
and chaptered adult books by four and a half. I was offered to skip multiple grades in school (but passed to stay with my friends).
-I was VERY clumsy as a kid, with horribly toed-in walking, I tripped over my own feet often and they tried to put bar-shoes on me, but had to remove them because I walked so young.
-As a child, I always felt like my joints were SUPER loose, and I always felt like just sitting up /standing in line, etc was EXHAUSTING. This has only gotten much worse as I've gotten older.
Head / Hair / Brain:
-I'm a natural red-head with fine skin and freckles, which seems to be pretty common in EDS type-3. I've seen a LOT of red-heads.
-Accelerated Hair growth (my head-hair grows nearly 1.5" a month)
-Thin, fine, limp hair with a permanent part no matter what I do - my hair won't hold a perm, and resists dye. (This could be because of my red hair)
-Brain-fog, short-term memory problems with functional things- like I can't remember if I did something, or WHEN I did something. It's like my body doesn't remember what it's done. HOWEVER...
-I have incredible long-term memory - I can even remember many things that happened when I was just 8 months old in detail.
- I have an Eidetic memory for things I read and see. I can flip through a magazine, and then tell you what page the razor ad was on, or almost repeat an entire article word for word.
(For example: No one has EVER beat me at that bar-computer game where an image flashes, the faster you touch the screen, the faster the picture goes away, and then it asks you a bunch of questions about what you just saw - like how many spoons were on the table, or how many people were wearing sunglasses - to date, I've never gotten a single question wrong because my mind forms a complete photo almost instantly of what I saw, and I can recall it in incredible detail)
- I read incredibly fast and can type over 165 wpm
-ADHD symptoms that started in middle-school with impulse control issues, inability to sit still (which i still think was due to pain/discomfort/always looking for a more comfortable position - not necessarily hyperactivity)
-Oddly, I've almost never had a head-ache in my life, save a few times when I was really sick and had sinus pressure. (I realize how lucky I am).
-I have keratosis pilaris on my upper arms, thighs (above my knees on both upper legs) and along my jaw line. It causes the pores to get plugged up and red bumps. On my face, it causes bumps almost like acne but it's clearly not.
-I have a horrible time with picking, especially at my face because I cant stand that just washing/exfoliating doesnt clear it up, so I often pick, poke, squeeze, etc. The doctor can tell me all he wants that it makes it worse, but I cant stand having anything IN my skin.
-I have VERY fine blonde body-hair that's totally unnoticeable and almost invisible. As I hit my 30's, this fine peach fuzz has shown up along my jawline, my upper lip, and below and around my mouth - where the plugged skin is worse. Even though it's all but invisible, I've found that shaving it can help exfoliate the skin and does help.
-I soak in Epsom salts and exfoliate with apricot-shell and loofah oatmeal soaps which help reduce the keratosis pilaris.
-An illumask from Walmart REALLY helps with my skin on my face, to reduce redness, and Lotrimen (not because it's a fungus, but because the medication helps to break down the keratin plugs that form under the skin), and breaks down many of the painful lumps before they begin. I HIGHLY recommend this combination!
- I've never needed glasses, until my 30's - because my night vision and depth perception have become awful, very rapidly.
- I am red/green deficient from a head injury that happened when I was playing soccer at 13.
-I have floating spots that started when I was 31. Nothing is wrong with my eyes and doctors have yet to get an answer to why. It gets worse and then goes back to a minor inconvenience, but it never totally goes away. The spots seem to remain in the same spots, though sometimes they get larger and return to a small size. These floaters often make me think I'm seeing a bug or something in my vision, takes a second to remember it's just my eyes.
Anesthetics / Surgery Issues:
- Almost no general anesthesia works properly - it either wears off really fast or doesn't knock me out even in large doses. This has been observed by over a dozen different doctors.
- I've woken up during various surgeries, and my epidural wore off in less than 20 minutes - they barely had time to finish my tubal ligation, and I was fully able to move my legs before getting to the recovery room.
-Local anesthetics don't work at all- for dental procedures, I've had hundreds of shots, which sometimes numb near my eyeballs and parts of my upper face, but don't do anything for my mouth/teeth. I can feel almost all dental work if I'm awake.
-Pain medication does not work normally either, I can have abnormally large doses that someone my size shouldn't metabolize so quickly or be able to handle without seeming "high" or out of it. No one in my life except my family would have ANY clue that I take 100 mg extended release morphine every 12 hrs and 4 mg dilaudid for breakthrough pain because it doesn't affect my behavior or coordination at all. Even my eyes don't dilate severely like most people's do.
Mouth / Jaw / Teeth:
-Jaw locking problems - pops if I open wide enough. TMJ symptoms since I was a young teen.
-No dental anesthetics work or last. I've had HUNDREDS of shots of varying local anesthetics and I can still feel everything.
-Dental pain seems to affect me abnormally badly to the average person.
-I used to get a lot of mouth ulcers (NOT cold sores - little round open wounds inside my mouth, on my inner cheek, inside my lips, on the gums, tongue, under my tongue. Adding vitamin C to my diet seems to have worked to reduce these. My mom and son have the same problem.)
-Very high pallet
-Very crowded teeth with no room for all my teeth - had to have some pulled. Had braces for a few years because my teeth were crossing, and they moved immediately as soon as my retainer broke. Even though I now have some missing teeth - the teeth crowd together.
-My baby teeth never fell out and had to be pulled. I got my first loose tooth at NINE. Two of my baby teeth lasted until I was twenty four.
-I was missing eight adult teeth - one of my wisdom teeth and several of my other teeth both front and molars simply didn't exist.
- My jaw was broken when my wisdom teeth were pulled because the doctor must have not realized that my jaw would just dislocate when he opened my mouth far... my guess is that it easily dislocated from manual manipulation, and he just opened it too far and my jaw bone cracked length-wise. It was a LONG healing process, caused huge swelling and eight weeks of being unable to open my mouth. We had to pry my teeth open with a spoon to put pain medication in - no joke.
-While I was pregnant, my teeth which had NEVER had a cavity my entire life, suddenly began to crumble. Since then (I'm 33 now) - I've lost seven teeth, have two that are beyond repair, and have about a dozen untreated cavities. Fillings seem to fall out, and while root canals do kill the nerve- the teeth can't seem to last after, and regardless of caps, crowns, etc - every tooth I've had a root canal in, has completely fallen apart.
- Since this list was made, I had all of my molars pulled by an oral surgeon. The only teeth I have left are thirteen of my front teeth and those are breaking and will need to be pulled as well. :-(
Thyroid / Fatigue / Insomnia
My thyroid was diagnosed as slightly low functioning at 29 while I was pregnant, but not low enough for medication. By 31 I was low enough to need medication.
-The thyroid issues cause horrible fatigue - even when I take my medication properly, I still have issues with fatigue that's impossible to counter-act without medication (I take 30 mg Vyvanse which helps with memory-fog, short term memory, impulse control AND helps give me the energy to stay awake 12-16 hrs a day)
-I have waves of insomnia that I've yet to solve. I will not sleep normally for weeks, and then be unable to do anything BUT sleep for days. Vyvanse helps immensely but has severe side effects for the first 7-10 days on it and is VERY expensive.)
- Thyroid issues can and have affected my ability to have a second child, and we are now being treated for unexplained fertility issues five years after the birth of my son.
Neck / Throat:
- I have problems swallowing, and at times get a lump in my throat that I can't swallow. It lasts for hours, days, sometimes weeks. Doctors tell me its GERD but I've got no other symptoms of heartburn. Simply a lump that shows up for no reason and wont go away.
- I was finally diagnosed with an incompetent esophageal sphincter during an endoscopy recently - so apparently some stomach acid IS corroding my throat.
Spine / Back:
-Horrible posture - I can't sit up straight, feet on the floor, back straight for more than 40 seconds. I slump, I put my feet up on everything, I sit with my feet tucked under me or up on the dash - on the computer, I sit like a pretzel - it's almost absurd the positions I will get into to get "comfortable" - it's like my body naturally looks to rest on itself - even when I was a police officer, at the range, I'd hold my elbows against my belly to shoot, because holding my gun up was EXHAUSTING.
-I have horrible muscle spasms and knots in my back. Myofasical release massage helps IMMENSELY but only lasts 2-3 days or less because the spasms come right back. It's also really expensive, so I'm lucky if I can get a good massage once a month, sometimes less.
-To date, we've tried nearly every muscle relaxer that exists and none seem to work, OR they just knock me out for 16-20 hours which isn't practical. I'm not currently taking any muscle relaxers for this reason. I now have a prescription card in NJ for medical marijuana (as of July 2015) for muscle spasms, and it does help quite a bit.
-I have horrible ongoing low-back and tail-bone pain. When I was a police officer, I would shove my metal ticket book behind my low back as lumbar support in my car which helped immensely. As a child, I would sit in weird positions to avoid back pain. As an adult, l spend a LOT of time unable to get comfortable - I used to sleep curled up, now I sleep on my back, but I've yet to find a comfortable bed/surface or way to sleep that reduces my pain. A pillow between my knees DOES help. I have since gotten several Yogibo chairs and pillows, which help a lot - I even sleep in my large Yogobi couch from time to time!
-MRIs have to be upright because I'm terrible claustrophobic even with meds - they show some arthritic change but arent overly helpful because nothing is actively dislocated while the MRI is being done, so it doesnt show a whole lot. The first two orthopedists completely dismissed all my pain and problems because my MRI's didn't show any bulging disks, etc.
-I was diagnosed with crohns in summer 2008 while i was hospitalized on and off for seven weeks where I lived at the time. I still have specific foods, meds, etc that I avoid for flareups although some things (like fried foods) are just ALWAYS a no-no, no matter what.
-I've been off medication since my pregnancy in 2010 - and have been in remission since around mid 2009 though I still have have some IBS type symptoms occasionally.
-I cant take anti-inflammatories or NSAIDS as well other typical mild pain relievers. (the entire list is advil, tylenol, aspirin and naproxin) because they cause horrible GI pain, cramping and bleeding, and I'm pretty sure that's what caused or at least triggered the crohns to almost kill me in 2007.
- I have tried EVERY exclusion diet, and skipping gluten, dairy, citrus, meat, carbs, sugars, carbonation, etc etc etc doesn't work. I have literally done each one, for months, with NO results - none of these benefit anything.
-I have regular colonoscopies to be sure the Crohns is still in remission - the only problem is that
- I had severe GI slowdown and even a blockage that required surgery while on oxycodone, so I got off of it - it did help with the chronic pain, but wasn't worth the awful effects on my GI. During the time on 15mg oxycodone, I gained almost 60 lbs, destroyed my appetite and sense of taste, and was constantly battling digestive problems (related to stasis).
- I had one pregnancy and it was fairly normal in 2010.
- During my pregnancy, I was off all medication (I wasn't yet on pain medication as I was diagnosed with and my EDS got much worse at the end of, and after my pregnancy). My GI slowed down naturally, so the pregnancy almost seemed to "solve" all the problems with my crohns even though I'd stopped medications (I had done remicade treatments when first diagnosed, and later was on Asacol and Dicyclomine/Bentyl).
- I have horrible cramps that seem to be worse when my thyroid works properly, but I do have very short periods and very irregular cycles that have proven impossible to track.
- I was diagnosed with interstitial cystitis and have chronic and constant problems that feel like UTIs. I did have a problem with recurrent kidney infections which were solved with heavy IV antibiotic use - but the iv antibiotics caused permanent tendon damage (levoquin and cipro - at the time we didn't know that with EDS, I shouldn't be taking them).
-The cystitis causes chronic UTI symptoms, and I take AZO about fifteen days a month to help reduce the pain/burning/urgency. It's especially bad during that time of the month and is a pain in the ass in relation to my marriage for obvious reasons (though my husband is incredibly understanding). Sometimes I take AZO as a preventative because I *know* the symptoms are coming back.
-I have had awful problems with urgency, maybe I just wait too long to actually get up to go to the bathroom because of the chronic pain, but once I'm en route, its basically an emergency.
- I tried to do both the bladder installations (where they put the medication right into your bladder) plus take the oral meds (elmiron and elavil),but the oral medication made me violently vomit and no adjustments help- I absolutely can't take them. The bladder installations don't last long enough to be worth the inconvenience, humiliation and constant risk of infection, plus, they leave me with the same pain and burning and I still have to take AZO. So I just live on AZO and I'm hoping it's not killing me.
I THINK that's about it.... still adding to this as I think about more things...
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!
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.