This card is to go with my post on How to Use the ER in Case of Chronic Pain Emergency, which has gotten over 50k views in just under a year! I never thought anything I wrote would be shared to facebook 10k times, or viewed 50k, or shared all over Pinterest, or anything remotely close to that, honestly, especially in my first year of blogging. I’m so thrilled and so thankful for the opportunity to share what I have researched and witnessed firsthand about living with chronic illness, chronic pain, disability, and mental health challenges.
I will be hunting down more relevant alert cards and posting as I find and edit them. Please feel free to leave suggestions in the comments below, and I will do those first!
#ehlersdanlossyndrome #emergency #alertcard #justincase #infographic #chronicillness #chronicpain #EDSawareness #EDS #hypermobility #dislocation #subluxation #JHS #hointhypermobility #hypermobility #severepain #EDSalertcard
I found this article which I had written about on Facebook before I had a blog. The first time I read about this girl’s story I felt so alone, so overwhelmed and out of control and consumed by pain that I cried the entire time I was reading it. I didn’t yet realize how many of us were going through the same thing, or how many friends who truly get what chronic pain means that I would meet along the way. I just knew the desperation, anger, and denial that I was piled under. Fortunately, times have changed, or at least my perspective has. I can still really sympathize with this girl, and understand where she is coming from, and I am still incredibly grateful to her for writing her story at a time when I felt hopelessly isolated. This may have been the first time that I realized if more people were less afraid to speak out about chronic pain, we might be treated like human beings, eventually.
My Story: Looking for a New Doctor
National Pain Report
May 26th, 2014 by Kitty Taylor
I’ve had chronic pain as far back as I can remember. It got unbearable a few years ago after a serious injury. My body won’t forget the pain and it feels fresh as day one without medication.
I recently moved to Colorado from Nevada after being with the same doctor for many years. Now I’m having a hard time finding a new doctor willing to prescribe the medication I’ve been taking. I’ve found plenty of clinics that say they specialize in pain management, when in reality they are rehab clinics. Their sole purpose is to wean you off narcotics and put you on highly addicting medication, such as Suboxone or methadone. Some clinics are treating pain with Suboxone long term. That was not the intended use.
Then there are pain clinics, usually the spine centers, that only do injections and don’t prescribe drugs. I wish they would distinguish in their business category what they’re really about.
The first clinic I thought would be helpful turned out to be a Suboxone clinic. On my second appointment there they told me outright that I wouldn’t be continuing on the same medication and that I would be going on Suboxone. If I didn’t agree that, I was told they’d cut my doses so low I couldn’t handle it anymore. So I canceled my next appointment with them.
Drugs like methadone and Suboxone (which may or may not help the pain) are just as dangerous and the addictions to them are intense. The withdrawals are unreal. Coming off the medication I’m on now would be painful, but having to come off one of those could cause months, not just days, of withdrawal and pain.
Not only that, but imagine if you couldn’t get your next dose of methadone or Suboxone, you could end up in a coma! Any doctor that says there aren’t side effects and the withdrawals aren’t bad is lying.
It’s been four months since my last appointment with my helpful doctor and I’m still looking for a new one. One clinic I had a referral to, the doctor refused to accept me as a patient. It’s taking so long to find a doctor and I’ve got to find one quick! There are so few listed and so few that prescribe narcotics or are honest about what they practice. If you are rehab clinic you should not be advertising that you manage pain.
I’ve certainly been made to feel like a drug seeker and nothing more since I’ve moved. My last doctor never made me feel that way. He was caring and compassionate from day one. The only complaint I have about the visits there was that the DEA had them scared to prescribe medications that I had been on for a long time. My medicine and schedules were altered based on word from the DEA, not what my doctor felt was right for me and not what was working for me.
My daily function is greatly decreased since my medications were screwed with and it’s getting worse. First they took away Soma and it was painful trying to find another muscle relaxer. Even the one I’m on now sucks, but it’s better than nothing. Some of them I think were causing more muscle spasms and cramps. It was so bad I looked like I was having a seizure.
Then they couldn’t prescribe more than four oxycodone pills a day when I was on six. They couldn’t even prescribe Demerol anymore because the DEA and the county were having so many problems with it. The hospitals stopped keeping it and the pharmacies stopped ordering it because of theft and robberies!
And this was my response, a year ago:
“This is so much like my story. The way she talks about having to deal with “pain clinics” who only push methadone, or who only push Lyrica and Savella, or who only do injections. None of them have the ability to actually treat acute flare ups. I know from personal experience that even when a procedure at a pain clinic goes wrong and they have caused you intense and unrelenting pain, they do not offer any help, just tell you to calm down, because you’re scaring other patients, and “if it’s really that bad” to go to the emergency room. Pain clinics are a gimmick. A glimmer of hope that turns out to be bullshit when you get up close, every time.
I can’t do cortisone injections, I can’t take most antidepressants, nor steroids, nor do I care to, I am taking Lyrica and two different muscle relaxers at the same time for spasms and I also take all the usual Vitamin D, B-12, magnesium, zinc, rosehips, tart cherry extract, etc, that seem to help maybe? Who knows. The only time I have ever gotten any relief from this pain is after six hours waiting in agony at an Emergency Room, watching junkies and fakers get treated with more dignity than you, because you refused the little cup full of oxycodone and valium (I had already taken my personal comfortable limit of oxy while waiting in the ER, and I told them so, and I don’t do well with valium, it causes panic attacks and it’s written so in my charts if they had payed attention). One time I was told rudely to leave the ER, and then billed $600+ for the pleasure of being treated like human garbage by a very bitchy ER doctor after waiting many hours to be seen. Twice I received actual pain relief that lasted maybe five hours and was the only relief from the hell of fibro that I have had in two years. I haven’t been to the ER in over a year, but I think about how the ER is always full of people who feel better than me. The ER is a very, very, VERY last resort at this point, however.
I’m not even functioning anymore, I’ve been in way too much pain for way too long. I’m just trying to get to a place where I have enough moments in a day to take care of myself properly. I’m not even close to that level on my current treatments. Most days I can’t brush my hair or take a shower. Most days I spend two hours doing a task that should take fifteen minutes. Most days I am overwhelmed and unable to advocate for myself.
The point she makes that I think cannot be overstated is that chronic pain patients don’t abuse medications. Then we wouldn’t have them when we need them. The pain is real and we would never want to not have the ability to treat it.
We are just as scared of finally finding the right drug (can it please be a non-opiate, non-psychoactive drug?) that makes the pain bearable only to have it taken away again, as we are terrified of the pain we are in continuing unchecked. And we are scared of addiction, too. And scared for our organs. And scared for the changes in us caused by taking pain medication. We’ve weighed all that. The pain warrants the medication, or we wouldn’t take it.
The pain is already changing us, rewiring our brains, making us shells of the people we were before, and turning our bodies against us. If there were something better, we would certainly take that instead.
I understand her panic and her logic and I really feel for her.”
Phew, so that’s me a year ago. I don’t regret writing any of that, because at that time it was all true from where I was standing. It’s important to note that I was extremely depressed, and had been disappointed and disillusioned so many times. I had a primary care doctor who believed I was faking, no way of seeking relief except the ER, and I very much didn’t understand what was happening to me. At the time, open therapy was doing very little for me. I spent more time staring at my psychologist in total confusion than I did processing or talking things through. She would ask me questions like “what kinds of self-care routines are you doing on a regular basis?” and I would look at her like she had grown a second head, and she would push, “you must be able to think of one self-care activity, I don’t care how small it is.” I was still confused. Self-care? As in, my needs had to take precedent over others before I was at the point of throwing massive temper tantrums, crying uncontrollably in public and at work, and having ten panic attacks in one day? How was I supposed to even start? What did it all mean? Was this lady crazy? I was supposed to get better, not spend more time wallowing in “my needs”.
That’s my thinking a year ago. The level of brain fog I was enveloped in at that time is pretty evident, and there isn’t a lot of built in logic to my ranting, but I wasn’t even aware yet that my cognitive abilities had been taking a nosedive over the past two years. I knew I had Fibromyalgia, but I didn’t know much about it or much about what my life would look like in a year. To be honest, when I typed my response to that writer on National Pain Report, I didn’t even know if I’d be here in a year. Two girls with Ehler-Danlos Syndrome responded to my posted response on Facebook; one is a dear friend now but was someone I had just met at the time, and another I was too self-involved to reach out to in return. Currently, I am haunted that I didn’t reach back, more than I am bothered by anything that I did write. Reading through this outpouring of my own overly raw emotions made me wince, but seeing how I ignored another spoonie’s attempt to connect gave me actual regret. Both girls have EDS and encouraged me to push forward to a diagnosis.
I still don’t have the diagnosis, but I am treating my joints with much more care and attention and I am seeking physical strength instead of allowing fear of injury to mandate every activity. I also do finally understand what self-care is and have a long, long list of ways to recognize and put disordered thinking in perspective, but I am still learning more every single day. I would no longer characterize my life as hellish. Some days are indeed horrible, but I have good days too, and I am more prone to seize them now than a year ago.
I feel gratitude and empowerment when I take care of myself these days, not selfish guilt, but it took reframing my thoughts, repeatedly. Of course I still forget to make myself a top priority sometimes. There are always improvements to be made, but I am confident (another new development) that I will continue to make necessary changes and seek out information that helps me cope. In the mean time I am trying to find joy in small wonders. Any little victory is cause for celebration. Today, I’m happy that I have made progress since my diagnosis. Visible, written down, real progress. All the hard work has been overwhelming at times, it has even felt like I have slid backwards more than I have been able to put one foot in front of the other and keep climbing, but in one short year, the small changes I have made have taken me a long way from not knowing if I wanted to be here in a year, to planning for the next five, ten, twenty years of my life. I am even starting a business with a close friend, something I thought was ripped out of my grasp by illness which has actually become much more possible because of the life adjustments I have made to accommodate the chronic pain that dogs my every move.
It just proves that accepting and processing what illness means for me personally, minus the guilty nagging voice in the back of my head, has made all the difference. I think others around me may be frustrated by how little I can seem to accomplish in a certain amount of time, but I now realize that this isn’t their journey. It’s my journey, at my pace, and that’s healthier than continuing to constantly feel like a failure for struggling to keep up with everyone around me. I don’t have a magic finish line that I can get to and be “recovered”. The best I can do is the best I can do, end of story. I will work with what I’ve been given, and I will be grateful for what I can do on any given day. Sometimes that means just breathing in and out for hours, nothing else, and sometimes it means charging at life like I don’t know what pain and illness even are.
It’s amazing how often health providers get asked directly or indirectly whether someone experiencing pain is ‘faking’ it. The short answer is the most accurate – we can’t tell. We’re not lie detectors, there is no ‘gold standard’ to work out whether someone is pretending or not, and the question is based on erroneous thinking about pain and pain behaviour.
I can almost feel the spluttering at my last sentence from some readers!
Let’s look at this more closely.
Remember the biopsychosocial model of pain states that the experience of pain and pain behaviour is influenced by three broad groups of factors: the biomedical/biophysical factors such as extent of tissue disruption at the periphery (or site of trauma), neurological changes of transmission and transduction (throughout the peripheral and central nervous system), and disturbance of the neuromatrix.
At the same time, there are psychological factors such as the level of…
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As a companion piece to my post about dealing with doctors in the context of a chronic illness, and because I so enjoyed A Body of Hope‘s humorous but realistic take on her experiences with doctors in Warm Milk: Physician Frustration, it seemed like some similar lighter fare was appropriate.
Here is a hilarious rant by Kevin White, MD, with the perfect rebuttal to the many doctors who think that fibro patients are faking it. It’s nice to see someone in a position to make changes so animated about advocacy for the chronically ill. It’s also nice to hear that my occasional feeling of homicidal rage are justified. 😀
Especially, it is awesome that there are doctors out there willing to defend us so bluntly and honestly. Thank you, sir!
The more I look, the more I find doctors giving us good advice. Wish I could find more in real life, but it’s certainly nice to know they’re out there!
About three months ago, I stumbled across a really interesting essay written by Rob Lamberts, MD on his blog at Musings of a Distractible Mind. The essay discusses in-depth and honestly how chronically ill patients remind doctors of their own humanity, fallibility and failure. This is something I have understood for a while but not been able to put into words.
Now that I have finally found a primary care provider who respects me and who I respect in return, I am a lot more hopeful about my future. All as a result of my ability to put trust in her. I do not, however, expect her to fix me or even necessarily tell me what is wrong with me. I do believe she is doing her best to figure it out, and she seems to believe my pain. Ahhhhh, miracle of miracles, I found a healthcare professional who actually cares! Novel, exciting, and entirely needed. 🙂
It seems the missing part of my previous relationships with doctors (not all of them, some of them are just plain jerks): I needed to show them the compassion I wanted to receive in return. This is just an excerpt from the wonderful words of Rob Lambert in A Letter To Patients With Chronic Disease:
…We are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.
Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain – is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.
-Rob Lamberts, MD
Written July 14th, 2010
(Read the essay in it’s entirety at http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease.)
So there you have it; part of the reason why you scare your doctor/nurse practitioner, the reason why you make them uneasy, agitated, and defensive. The author of this letter isn’t blaming his patients for making him feel like a failure, but he does go on to give us some tips for creatively gaining some ground with our doctors and reducing the tension in the exam room so everyone can behave like adults and no harsh “I don’t know what to do, your situation is just too complicated” gets thrown out there. Phrases like that effectively shut down communication and trust between you and your doctor. It’s as if they just slammed a door in your face. Of course, when we collapse into hysteria and start screaming for someone to fix us (um…. yeah, that might have happened, maybe…), that sort of thing can also shut down communication pretty quickly, just for example.
The step by step tips the author gives for cultivating a good relationship with healthcare team members should help to get things off on the right foot with a new doctor, or even mend a relationship with one of your current doctors. The latest poll of MD’s from 2013 Pain Report found that 1/4 of primary care doctors believe that all their fibromyalgia patients are exaggerating or even faking illness altogether (yikes!), so there is always that chance that you could be stuck with one of those jerks. In which case, don’t mend anything, just BAIL. Get out!!! Find someone else. Search the chronic illness support groups in your area for suggestions of primary care options who take your health insurance. (Hint, those support group websites often have lists of local lawyers for helping you file for disability and even local charities that can help with food, electrical, and mortgage/rent costs.) Then, once you’ve found a new doctor, use the author’s suggestions to build a rapport with him or her..
I know how frustrating the search can be, but I can promise you there is a huge, staggering, massive difference between a doctor who is a bad fit and the right doctor. Even with the right doctor, part of being chronically ill is understanding that no one understands us. We are always, to some extent, alone in our illness. Each of our pain is unique, it is not like anyone else’s pain. No two match up exactly. Therefore, no doctor will have the same take on it as the next. This is one reason why the author advises that chronic pain patients keep their eggs in just a few baskets; only seeing the same few doctors who are all in connection with each other and can actively manage your illness instead of bouncing from specialist to specialist to specialist.
Part of the shift towards receiving better care requires that we as patients always remember that the person we’re dealing with, underneath the title that shows us they attended a lot of school, is a human being who is capable of making mistakes and feeling guilty, defensive, or embarrassed by those mistakes. It is not our job to puff up our doctor’s ego by saying they did a good job treating us if they did not, However, it is also not our job to tear them apart when they are trying to do their best, even when we are just desperate for them to pay attention to our agony. Trust me, I get that, I have been there for more than a year straight not that long ago; just a total mess in every doctor office I went to, and every visit was a bad one that year. I left in furious tears far more often than I left composed.
Instead of going in dreading and fully expecting a fight, now I strive to help my doctors, nurses, and specialists more easily understand me by following some basic etiquette and planning for my time with providers more carefully. Thanks to the author of this article I am lucky to have found a great doctor-patient relationship with my new primary care who is a joy to see. She holds my hand when she has bad news, she is warm, compassionate, smart, and determined. I finally have an ally in my primary care! Finding such a gem of a nurse practitioner does not end my struggles with chronic illness, but it is a huge relief. Now when I encounter a doctor I cannot see eye to eye with, despite practicing compassion towards them, I am much more confident in identifying who will work with me and who is too jaded or disrespectful to be a good fit. I’m still learning how to implement all the advice the author laid forth so clearly, but after years of bad doctors and me being a bad patient in response, I think the cycle is broken.
A Letter to Patients with Chronic Disease is one of those essays I would recommend to all patients with chronic conditions, and it is one I wish I had read earlier in the onset of my illness. It found me at the right time, though, and I am so grateful.
In case you need to copy and paste the address of the original letter, here’s the url: http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease
my dear friend, A Body of Hope, wrote a companion piece explaining with a touch of humor just how frustrating it is to depend on doctors, and a clip from Twin Peaks (eep!) making it all clear as day.
Here is the her post: Warm Milk: Physician Frustration. Head on over and check out all of her insightful and inspiring posts. Her sense of humor is flawless, and I am always and forever in debt to her for helping me get started here.
This is going to sound harsh, and it is. It is one of many, many harsh lessons learned through dealing with a chronic illness. Learning not to fear new symptoms is a huge part of accepting chronic illness, and it isn’t fair, but that’s the way it is when your doctors dismiss everything that goes wrong, large and small, without so much as researching them first. I don’t catastrophize anymore about new symptoms, partly because I don’t have the energy and partly because it does not help, it doesn’t get me anywhere I want to be, and it sometimes can make a flare up spiral out of control. I’m scared of lots of stuff, but even having half of my face go numb for eleven days (like right now!), it just isn’t a big deal compared with the rest of my illnesses and the other weird, painful, and occasionally terrifying symptoms that crop up out of nowhere. I get crushing chest pains that go down my arm and feel exactly like I’m having a heart attack, complete with crazy blood pressure and all the blood flow to extremities and stomach shutting down and my lips and fingers turning blue.
Most people would have done differently, but the first time it happened, I was in too much pain to speak, it was like the wind completely got sucked out of my lungs. I didn’t even call my doctor, instead I asked my friends what was happening to me, and they knew immediately what it was and that I just had to wait it out. My chronic illness sisters were so compassionate and gave me tips to get through the attack based off of their experiences. I later learned there was nothing an emergency department could have done for me, and that my doctor actually didn’t care that I was having them on a pretty regular basis when I did tell her about them. She didn’t even put it in my chart notes. If I had gone in to the doctor that first time, it would have no doubt been a negative experience, and I need all the positivity I can gather when I am going through a scary or difficult symptom especially for the first time.
So at least in my unpredictable case with so much going on, actually expecting help from doctors is way more terrifying than having my face go numb and not being able to get out of bed because of severe spasms. Again.
That being said, I’m tired of being ill, and mostly of feeling so on my own when it comes to debilitating health issues. I want to go back in time three years ago and be a 20-something with a stressful but mostly happy living situation, and act like other 20-somethings and not be sick and stuck in my house all day every day. When I get injured, I want to still believe that doctors can fix it all. I don’t want to simultaneously have chronic fungal, bacterial, and viral infections that will not go away. I don’t want to look at my disgusting house and think, “hopefully my body lets me do the dishes at some point today” or “not even a possibility, don’t even look at it.” and then realizing that even if I fall over in the middle, I have to do them no matter what, because this is life and this is the rest of my life. I might sound stronger than I did a few years ago, but I feel the opposite. I feel fractured apart by chronic illness, even my thoughts are scattered and lack complexity and depth.
Part of what I want people who are newly diagnosed to know is that breaking down is okay. Being frightened is okay. All of your emotions are valid, and just because there is an emotional component to your pain and symptom flare ups, it does not mean you are to blame in any way for the failures of your body. You aren’t floundering because you’re weak, you’re floundering because being in chronic pain takes away some of your ability to think clearly, it shuts your brain down to an extent, and frequently, doctors lack the compassion to properly understand where you are coming from.
At first, chronic illness is overwhelming, it is losing friends and the ability to be independent. It is sadness, depression, anxiety, and feelings of being a burden and/or being judged lazy or crazy. In the beginning you don’t know when the losses will stop. Until one day you find yourself on the same emotional footing you were on yesterday, and then hopefully the next day as well, until maybe you have a day where you find yourself more “you” and at peace than you have been in a long time. I’m not saying the pain goes away or you get used to it or you should just learn to tough it out or anything, just that there is not enough room in our previously busy lives for the kind of suffering that chronic illness heaps on us. Part of the challenge is making room for the pain and being respectful towards it. It is a part of life now, and if there is no room for it, the suffering it causes spreads across every part of your life.
The more I make room for the pain and general feelings of being unwell, the better I am able to cope with the other symptoms, the ones that scare me almost as much as going to the doctor one more time.