Ehlers-Danlos Syndrome Medical Emergency Information Cards
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
More Exhausted Than Ever
Right now, I will do something very small and have to sit down immediately after or during a slightly more rigorous task, and it’s not the pain that’s knocking me down so hard, although there is a lot of that, I’m just pretty damn exhausted. Like, my bones are way too tired to walk to the mailbox or make it down the stairs to the garden, but I’m still able to fight through and manage those things sometimes. It’s very confusing. Overall though, the fatigue has ramped up to a point where I’m scared a little.
This is not meant to be a bid for sympathy or anything, I just have to have a place to put all this down and get it out of me. My body won’t allow me to do much of anything else and even writing has me fading in and out of consciousness because it leaves me so fatigued. To be completely honest, I’ve been feeling a lot worse lately. I pushed myself trying to create a small business that was never going to happen, and in many other areas of my life, and none of my accomplishments have added up to anything lately, not even one completely clean room. I have learned a lot and there were tiny moments of excitement and victory, but that isn’t anything I can put on my resume, really.
It’s depressing to feel like your health is going in the opposite direction that you’re aiming for. A lot of us are familiar with that feeling though, unfortunately. It’s just another part of chronic illness unless you can find a treatment that works. For a while things will hold steady symptom wise, and then a cluster of new ones will pop up one after another, which is what has been happening recently. Not every single new symptom stays around long-term, some of them will just last the length of this particular flare up, and some of them will attach themselves to my illness and they will be added on top of my daily already unmanageable pain, fatigue, and bodily systems that are completely out of whack. But these new symptoms will not be so courteous as to show up clearly on a test. Just abnormalities here and there, nothing to make an easy diagnosis off of. It makes my head spin trying to get a clear grasp on even the list of weird things that have happened with my body, and a lot of it isn’t stuff I feel comfortable sharing.
This flare up has brought with it a bout of sleep paralysis episodes, limb tremors and increasing muscle weakness, much worse than usual chest pain, rib dislocations, absolutely unpredictable new headaches and some severe migraines that actually got the better of me and landed me lying down until they subsided, hip subluxations on both sides, knee instability and weakness, poor typing and speech, including mixing up words, writing something completely different from what I was intending or thinking I was writing, forgetting phrases and words, increased inability to finish a sentence because I can’t remember why I started it, using big words but forgetting all the small ones, dizziness, trigeminal neuralgia attacks that feel like being struck with lightning over and over again in the same spots on my face, occipital neuralgia that is like being chiseled into on the back of my head, or like someone is grinding a screwdriver as hard and slow as possible into my occipital nerve, tmj issues making it a challenge to eat/smile/talk too much, jaw dislocations hundreds of times a day, lack of coordination and hand dexterity as well as random violent spasming when I try too hard to control my muscles for extended tasks like painting and typing, really painful joints all over, fatigue so heavy I feel like my veins are full of lead and my muscles are made of tissue paper and my bones are filled with cement, GI issues which all of a sudden include throwing up just about every other day, and delayed stomach emptying with all the associated nausea and pain and hating food/food hating me, possibly gastroparesis but I’m hoping not, problems associated with migraineurs even when the really severe head pain is not present (olfactory hallucinations, auditory hallucinations, light/sound/smell sensitivity, big blurry spots or color spots in my vision, things that look like shiny, constantly moving sprinkles all over my field of view, thinking things are moving when they aren’t, as well as not being able to track movement very well), falling asleep suddenly after exertion with no warning, feeling like I’m walking on razorblades and broken glass, sudden moodswings mixed with lots of feeling hopeless or just numb and dissociated from my disobedient body, muscle cramping, brainfog that is stronger by far than my Ritalin prescription, not understanding what people are saying unless they repeat themselves a few times, some obsessive behaviors I cannot stop doing and ptsd flashbacks, skin that hurts like thousands and thousands of nettle stings, and just so much more, but it would take so long to list, and this is why seeing a doctor once every 3-6 months is totally and completely unhelpful.
And I’ve been like this for two and a half weeks now, and it keeps dropping new surprises on me so I’ve got no idea when it will let me go…
I lost 15 pounds, and that was startling and positive. Not sure why I was so startled, I think it’s hard for me to notice the healthy changes I make and pat myself on the back unless some kind of tangible progress comes out of it, but lately I actually have noticed myself doing better at picking the salad from the garden over chips or pasta on the side, I’ve been back into yoga in bed, and in my better moments I try to sneak tiny bits of yoga into my day, with my arms close to my body and not pushing my flexibility to it’s max because I’m not in that kind of shape and my body can and will bend too far in every direction if I don’t watch myself in a mirror while I do it.
I’m so exhausted that it makes me laugh that I’m adding yoga back into my days but I can’t shower more than once every five days. Priorities slightly skewed? I don’t know, a shower is one very big expenditure of spoons that you’re committed to once you start, and yoga I can stop any time it hurts me, I can modify it to hurt less or not at all and to be done lying down even, and I dole out spoons one at a time to each little micro-session which is much less punishing on my body than taking a shower. God I miss being able to do that every day. The stupid shit we take for granted when we are healthy, I was so greedy taking two or three a day during sports and summer or just to get warm in the winter, and I never imagined I would ever give up my obsession with being sparkly clean every single day. It hurts to think about stuff like that though, and in general I just try to accept that things are the way they are and not ask “why me?” too much.
Not being able to shower is a big gauge for how much of a toll this has taken on me. The things I would have never given up if I had a choice, the gardening every day and walking for hours, the freedom of driving and earning a paycheck even if I didn’t enjoy the job or the commute sometimes, my clean house, the freedom to work out or go out with friends whenever the mood hit me, frequently visiting vintage shopping and buying fancy coffees just to treat myself, painting whenever I had a creative idea come into my head, preserving and cooking food especially when it came from my garden, baking bread almost every day, fashion, being able to complete deadlines and not be a total flake, being able to plan my next day and stick to it,
I feel bad enough on a daily basis that younger me, who had a damn high pain tolerance, would have been asking to go to a doctor almost every morning. But I don’t go even when it gets to be unbearable, because it’s so discouraging to be told more than once every 3-6 months that there is nothing new to try, nothing else to do that is in my price range, nothing, nothing, nothing, and to be treated like a drug seeker, a whiner, a lazy kid who can’t be bothered to get a job, when I just want to get better. I just want some hope, some kind of a future to plan on and look forward to. I don’t want to have to take these drugs. I don’t want to have to take two sparse and precious oxycodone just to get through taking a shower. This is not something I constructed to get out of working. I miss working. I’m young, my ability to work was my future and now I’m very lost.
I’m reaching for that point towards acceptance of my illnesses and new life where I can start to explore my talents and try to find more solutions, more small improvements, more joy in my life. I feel like it’s both close enough to grab and pull closer and simultaneously so far away that I fear I just can’t get there. I know I can only take it one day at a time and keep looking for the small victories, the shiny bits and the lessons learned no matter how painful, so I can quietly celebrate my life for those wonderful things amidst the chronic fatigue and pain.
Why Untreated Chronic Pain is a Medical Emergency | EDS Info (Ehlers-Danlos Syndrome)
the above image is from Chronic Illness Cat and the below article is taken from EDS Info, a wonderfully informative blog for any chronic pain sufferer, which you should all go check out and bookmark and return to often.
Why Untreated Chronic Pain is a Medical Emergency
Alex DeLuca, M.D., FASAM, MPH;Written testimony submitted to the Senate Subcommittee on Crime and Drugs regarding the “Gen Rx: Abuse of Prescription and OTC Drugs” hearing; 2008–03–08.
UNTREATED CHRONIC PAIN IS ACUTE PAIN
The physiological changes associated with acute pain, and their intimate neurological relationship with brain centers controlling emotion, and the evolutionary purpose of these normal bodily responses, are classically understood as the “Fight or Flight” reaction,
When these adaptive physiologic responses outlive their usefulness the fight or flight response becomes pathological, leading to chronic cardiovascular stress, hyperglycemia which both predisposes to and worsens diabetes, splanchnic vasoconstriction leading to impaired digestive function and potentially to catastrophic consequences such as mesenteric insufficiency.
Unrelieved pain can be accurately thought of as the “universal complicator” which worsens all co-existing medical or psychiatric problems through the stress mechanisms reviewed above, and by inducing cognitive and behavioral changes in the sufferer that can interfere with obtaining needed medical care
Dr. Daniel Carr, director of the New England Medical Center, put it this way:
Chronic pain is like water damage to a house – if it goes on long enough, the house collapses,” [sighs Dr. Carr] “By the time most patients make their way to a pain clinic, it’s very late. What the majority of doctors see in a chronic-pain patient is an overwhelming, off-putting ruin: a ruined body and a ruined life.”
Dr. Carr is exactly right, and the relentless presence of pain has more than immediate effects. The duration of pain, especially when never interrupted by truly pain-free times, creates a cumulative impact on our lives.
CONSEQUENCES OF UNTREATED AND INADEQUATELY-TREATED PAIN
we must also consider often profound decrements in family and occupational functioning, and iatrogenic morbidity consequent to the very common mis-identification of pain patient as drug seeker.
The overall deleterious effect of chronic pain on an individual’s existence and outlook is so overwhelming that it cannot be overstated. The risk of death by suicide is more than doubled in chronic pain patients, relative to national rates.
What happens to patients denied needed pharmacological pain relief is well documented. For example, morbidity and mortality resulting from the high incidence of moderate to severe postoperative pain continues to be a major problem despite an array of available advanced analgesic technology
Patients who received less than 10 mg of parenteral morphine sulfate equivalents per day were more likely to develop delirium than patients who received more analgesia (RR 5.4, 95% CI 2.4–12.3)… Avoiding opioids or using very low doses of opioids increased the risk of delirium. Cognitively intact patients with undertreated pain were nine times more likely to develop delirium than patients whose pain was adequately treated. Undertreated pain and inadequate analgesia appear to be risk factors for delirium in frail older adults. [7]
PAIN SUFFERERS ARE MEDICALLY DISCRIMINATED AGAINST
Chronic pain patients are routinely treated as a special class of patient, often with severely restricted liberties – prevented from consulting multiple physicians and using multiple pharmacies as they might please, for example, and in many cases have little say in what treatment modalities or which medications will be used. These are basic liberties unquestioned in a free society for every other class of sufferer
chronic pain patients are often seen by medical professionals primarily as prescription or medication problems, rather than as whole individuals who very often present an array of complex comorbid medical, psychological, and social problems
Instead these complex general medical patients are ‘cared for’ as if their primary and only medical problem was taking prescribed analgesic medication.
This attitude explains why most so-called Pain Treatment Centers have reshaped themselves into Addiction Treatment Centers. Even with a documented cause for pain, the primary goal of these programs, whether stated or not, is to coerce patients to stop taking their pain medications.
This may work for a small number of pain patients who may not really need opioids in the first place, but is a “cruel and unusual” punishment for those of us with serious, documented, pain-causing illnesses.
The published success rate of these programs has nothing to do with pain – it is measured by how many people leave the program taking no pain medication, but there is no data about the aftermath, how many manage to stay off their medication long-term.
their obvious primary medical need is for medical stabilization, not knee-jerk detoxification
CHRONIC PAIN IS A LEGITIMATE MEDICAL DISEASE
Chronic pain is probably the most disabling, and most preventable, sequelae to untreated, and inadequately treated, severe pain.
Following a painful trauma or disease, chronicity of pain may develop in the absence of effective relief. A continuous flow of pain signals into the pain mediating pathways of the dorsal horn of the spinal cord alters those pathways through physiological processes known as central sensitization, and neuroplasticity. The end result is the disease of chronic pain in which a damaged nervous system becomes the pain source generator separated from whatever the initial pain source was.
Aggressive treatment of severe pain, capable of protecting these critical spinal pain tracts, is the standard care recommended in order to achieve satisfactory relief and prevention of intractable chronic pain
Medications represent the mainstay therapeutic approach to patients with acute or chronic pain syndromes… aimed at controlling the mechanisms of nociception, [the] complex biochemical activity [occurring] along and within the pain pathways of the peripheral and central nervous system (CNS)… Aggressive treatment of severe pain is recommended in order to achieve satisfactory relief and prevention of intractable chronic pain.
we are seeing ominous scientific evidence in modern imaging studies of a maladaptive and abnormal persistence of brain activity associated with loss of brain mass in the chronic pain population
Atrophy is most advanced in the areas of the brain that process pain and emotions. In a 2006 news article, a researcher into the pathophysiological effects of chronic pain on brain anatomy and cognitive/emotional functioning, explained:
This constant firing of neurons in these regions of the brain could cause permanent damage, Chialvo said. “We know when neurons fire too much they may change their connections with other neurons or even die because they can’t sustain high activity for so long,” he explained
It is well known that chronic pain can result in anxiety, depression and reduced quality of life
Recent evidence indicates that chronic pain is associated with a specific cognitive deficit,which may impact everyday behavior especially in risky, emotionally laden, situations.
The areas involved include the prefrontal cortex and the thalamus, the part of the brain especially involved with cognition and emotions
The magnitude of this decrease is equivalent to the gray matter volume lost in 10–20 years of normal aging. The decreased volume was related to pain duration, indicating a 1.3 cm3 loss of gray matter for every year of chronic pain
clinicians have used opioid preparations to good analgesic effect since recorded history.
No newer medications will ever be as thoroughly proven safe as opioids, which have been used and studied for generations. We know exactly what side effects there are, and they are fewer than most new drugs, with less than a 5% chance of becoming addicted if taken for pain.
In fields of medicine involving controlled substances, especially addiction medicine and pain medicine, the doctor-patient relationship has become grossly distorted.
doctors-in-good-standing who, faced with a patient in pain and therefore at risk of triggering an investigation, modify their treatment in an attempt to avoid regulatory attention
Examples include a blanket refusal to prescribe controlled substances even when clearly indicated, or selecting less effective and more toxic non-controlled medications when a trial of opioid analgesics would be in the best interests of a particular patient. At the very least, some degree of suspicion and mistrust will surely arise in any medical relationship involving controlled substances.
the quality of care most physicians provide is fairly close to the medical standard of care which is what the textbooks say one should do, and which is generally in line with core medical ethical obligations
For example, modern pain management textbooks universally recommend ‘titration to effect’ (simplistically: gradually increasing the opioid dose until the pain is relieved or until untreatable side effects prevent further dosage increase) as the procedure by which one properly treats chronic pain with opioid medications. Yet the overwhelmingly physicians in America do not practice titration to effect, or anything even vaguely resembling it, for fear of becoming ‘high dose prescriber’ targets of federal or state law enforcement.
It is a foundation of medicine back to ancient times that a primary obligation of a physician is to relieve suffering. A physician also has a fiduciary duty to act in the best interests of the individual patient at all times, and that the interests of the patient are to be held above all others, including those of family or the state.[23] These ethical obligations incumbent on all individual physicians extend to state licensing and regulatory boards which are composed of physicians monitoring and regulating themselves. [24]
A number of barriers to effective pain relief have been identified and include:
- The failure of clinicians to identify pain relief as a priority in patient care;
- Fear of regulatory scrutiny of prescribing practices for opioid analgesics;
- The persistence of irrational beliefs and unsubstantiated fears about addiction, tolerance, dependence, and adverse side effects of opioid analgesics.
A rift has developed between the usual custom and practice standard of care (the medical community norm – what most reputable physicians do) and the reasonable physician standard of care (what the textbooks say to do – the medical standard of care), and this raises very serious and difficult dilemma for both individual physicians and medical board
Research into pathophysiology and natural history of chronic pain have dramatically altered our understanding of what chronic pain is, what causes it, and the changes in spinal cord and brain structure and function that mediate the disease process of chronic pain, which is generally progressive and neurodegenerative
This understanding explains many clinical observations in chronic pain patients, such as phantom limb syndrome, that the pain spreads to new areas of the body not involved in the initiating injury, and that it generally worsens if not aggressively treated. The progressive, neurodegenerational nature of chronic pain was recently shown in several imaging studies showing significant losses of neocortical grey matter in the prefrontal lobes and thalamus
Regarding the standard of care for pain management:
1) Delaying aggressive opioid therapy in favor of trying everything else first is not rational based on a modern, scientific understanding of the pathophysiology of chronic pain, and is therefore not the standard of care. Delaying opioid therapy could result in the disease of chronic pain.
2) Opioid titration to analgesic effect represents near ideal treatment for persistent pain, providing both quick relief of acute suffering and possible prevention of neurological damage known to underlie chronic pain.
Pain Relief Network(PRN); 2008–02–28; Revised: 2008–07–08. Typo’s and minor reformatting: 2014-04-14.
via Why Untreated Chronic Pain is a Medical Emergency | EDS Info (Ehlers-Danlos Syndrome).
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An Old Rant and a New Perspective
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!
Kitty Taylor
via My Story: Looking for a New Doctor – National Pain Report.
One of the first things to go was how many different narcotics I was prescribed at once. My doctor had me on two long acting (1 pill, 1 patch), two short acting (1 scheduled and 1 breakthrough). So for short acting, I would have 4 Dilaudid a day scheduled and then up to 6 Norco per day as needed.
The Norco was taken away and so was the patch. I was down to oral long acting 4 times a day instead of 2, and 6 short acting a day instead of 4. It worked out about the same, except those extra Norco would be a godsend about now, especially since I’m running out of as needed meds because I’ve been without an appointment for so long.
This shouldn’t be happening. I’m looking for cash only clinics now even though I have insurance because I don’t want my business in all the computers everywhere. I’d also be fine seeing a pill pushing doctor that over prescribes. I’d be able to stock up in case something like this happens again and I trust myself not to increase my medication.
I never take more than I need and I’ve never run out before my next appointment. Because of being hospitalized I’ve been able to stock up on some of my own stash while the hospital administered to me with their own pharmacy.
There’s no point in making myself more tolerant and never getting what I need. That’s why I switch my meds to equivalent doses of different kinds every few months. That way I don’t need to increase. My body becomes tolerant to one and I switch to another until I become tolerant again and I switch back. This regimen worked well for me and my doctor agreed it was better than taking more and more.
I don’t want to be labeled or discriminated against for having invisible disabilities.
I get enough smacks in the face just using my disabled parking privileges!
“Kitty Taylor” is a pseudonym. The author, who suffers from Ehlers–Danlos Syndrome (EDS), Cushing’s Disease and Post-Traumatic Stress Disorder (PTSD), asked that her real name not be used.
National Pain Report invites other readers to share their stories with us.
Send them to editor@nationalpainreport.com
via My Story: Looking for a New Doctor – National Pain Report.
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.
In Honor of Rare Disease Day 2015: The Difficult Diagnosis
I would like to take a moment to recognize that February 28th is Rare Disease Day.
The name implies that not that many people are affected, but that’s a totally false assumption. There are way more of us than you would ever guess! Many of these diseases are so rare that physicians do not know how to test for them, would not recognize the symptoms, or take adequate steps to obtain diagnosis. There is only room for a certain amount of information in each person’s head, and I’m not implying doctors aren’t doing their job, just that there are probably many more who live with rare diseases than are currently counted on the tally, which is already estimated at well over 300 million worldwide. I live with rare disease, I know many who do as well, and let me tell you, a rare disease is a special kind of hell burden. Doctors think you’re crazy for even bringing up genetic testing, they think you’re a hypochondriac if you tell them what your symptoms and odd blood tests match from all your painstaking research, which if you have a rare disease, you absolutely have to do, and they scoff at the mention of names they’ve only briefly skimmed in texts and never seen in real life.
My rare diseases are ones that are actually fairly well-known, though doctors usually don’t know much beyond a one sentence summary (if I’m lucky), so finding proper treatment or even a specialist with a depth of knowledge on them is difficult. My path to finding a diagnosis is not over yet, and what I have managed to find out has been like pulling teeth. I know I’m one of the lucky ones just learning as much as I have so far.
When I first gathered the courage and research needed to talk to a doctor about Ehler-Danlos Syndrome, her immediate reaction was to call me fat. Yes, really. She looked at me, puzzled, and said, “Isn’t that a disease for tall and thin people?” and I had to bite my tongue, hard. I also had to accept that she was not going to help me with this. Not now, and not ever. She simply thought I was nuts, even though I match 100% of both diagnostic criteria. It was humiliating, I felt lower than dirt and like maybe she was right, maybe it was all in my head, I was making this up for attention or so I didn’t have to work anymore. She had me so confused at a difficult time in my life when I didn’t realize that pain affects cognitive abilities, and she definitely abused her position of power as a doctor, numerous times. I started to internalize all her comments about my psychiatric health, personality flaws, and physical unattractiveness. I lost trust in myself completely because I thought I was either dying or a liar, and I couldn’t figure out which one.
Unfortunately for my entire story, really, I was in the middle of a lawsuit with a company whose semi-truck hit me, so I didn’t want to switch doctors, even though she was pretty incompetent and wouldn’t sign off on X-Rays for months after my car accident, not to mention that she made me cry and hate myself and panic for days after every appointment. This doctor often repeated with obvious frustration that there weren’t a lot of options, she didn’t know what else to do for me, and that my panic disorder was obviously the root cause of all my problems, not my car accident. Sigh… there’s much more to my dealings with her, I have a long list of quotes that would make you cringe! But telling me it was all in my head was her favorite. She did it in writing, even.
Nevermind that I had actually been diagnosed with two relatively serious spinal injuries once we started taking X-Rays and MRI’s, and they were dire enough to warrant my two neurosurgeons getting excited and thinking they were going to get to cut into me. Both of them were told politely that for me, back surgery is not for curing pain, it needs to be done for a more compelling reason, or in the case where surgery will stop further degeneration. Neither one of those things is true for me, and neither doctor really believed that they could improve my pain in the long run. They both just wanted to “cut and see”. No. I have enough problems without botched spine surgery! In addition to the torn disc in my lumbar and the one in my cervical spine, there are also a set of birth defects including the Spina Bifida, plus 11 Schmorl’s Nodes (central disc tears that protrude into the vertebrae below), nerve root cysts, a random scarred area of my spine about a centimeter across, height loss and disc desiccation, bulging discs, disc degeneration/arthritis, and best of all, completely unexplained extra cerebrospinal fluid trapped in odd places in my spinal column, even two years after the car accident. I was told that none of that stuff was a big deal, but I beg to differ! At 22 I had more problems with my spine that most people in their 70’s or 80’s. That is not “normal”. As far as figuring out what out of all those issues is causing me pain? I don’t think it even matters at this point, studies have failed time and time again to relate MRI changes of the spine to specific problems. We all seem to experience them differently. Supposedly other people whose spines look like mine can actually function as if nothing is going wrong in there. Good for them. I guess I’m just rare on all accounts!
I sought out the local teaching hospital in desperation, starting at the pain clinic where I was, somehow unbeknownst to me, diagnosed with fibromyalgia, hyperalgesia, allodynia, and neuropathy. Since no one bothered to mention that I had been diagnosed with those things, I was still frantically looking for answers in a myriad of other directions, while waiting two months for my referral to rheumatology, where I finally figured out what was happening to me, or at least found out that I had been right all along to keep pushing, and to not let any MD stigmatize me into silence.
My primary care at that time still didn’t believe that I was in real pain, even after emailing back and forth with my fibro specialist, and I’m pretty sure she thought fibromyalgia was a fake diagnosis. She told me she was sure I didn’t have it even after two specialists diagnosed me months apart, at the most reputable hospital in the state. “Other people have it so much worse, just get over it” (not necessarily as true as she thought it was… I was just very stubborn about hiding how bad it had gotten because it made me seem even crazier). “You’re a smart girl, I don’t understand why you can’t figure this out” (thanks?). “If you would just eat right, this wouldn’t be such a big issue” (Wanna come over to my house and cook healthy every night and watch me throw it up later because many “healthy” foods hate my body? Didn’t think so… I’m doing my best. Food doesn’t cure chronic illnesses, though it does help). “I can’t do anything for your pain, but you should really start taking longer walks” (this was a favorite of hers… infuriating when you are trying to decide if walking to the toilet is even an option right now). “You won’t get better by taking time off work, you just need to try to get through it.” and best of all: “Oh, is that your sympathy cane?” Phew. Right. Because if you can’t see it, you must make the person feel terrible for having it. I struggled through years of increasingly aggravating (more like tortuous) physical therapy and massage, while my other symptoms began to make themselves known and I pushed them away, in denial.
It was all related to panic attacks, I told myself. Calm the fuck down, Jessi, then it will stop.
Except, it didn’t stop, even on a massive dose of 3mg per day of clonazepam, which works out to about 9mg circulating in your system at any given time, more if you’re a slow metabolizer.
I was stuck with that mean, bitchy primary care doctor, throughout the three years of wasting what little energy and brainpower I had on a lawsuit that failed because I was too exhausted, sick and in severe, never-endingpain to focus on seeing it through.
In the end I went into the office of the attorneys who represented the company that hit me, just me and my boyfriend, and I talked them up a couple thousand from the measly couple thousand they offered. I made the attorney I was arguing with leave the room to talk to his boss at least eight times, and after three years of work and hope and being told my case was worth hundreds of thousands because my life had been utterly destroyed by this accident, I was dropped by my lawyer within a month of my court date and told for the first time that the accident didn’t ‘look big enough’ to have ruined my life, and a jury would think I was malingering. I gave up, something in me snapped after three years of putting so much hope into being fairly compensated for what had happened to me on my way to work and all the torture I had endured since, all the tests and all the ER trips and the days spent in woozy pain land.
We closed the case in the enemy’s plush, modern law practice, at the beautiful inlaid table, in the room with soaring glass walls overlooking a rooftop garden and downtown Portland. When the attorney picked up my signature off the table and began to turn his back and walk away, I felt my soul deflating. I had been keeping strict wraps on my panic attacks for months up until that moment, but my body took over right then. It started as a swelling in my chest and a ripping sensation in my throat, and then a noise that sounded more like a dying animal than an upset human tore it’s way loudly out of my lungs. I am not sure how long I sat there and screamed at the top of my lungs, my boyfriend trying to close the curtains while people came up to the glass room like I was a monkey in a zoo, staring in at the girl freaking out for no apparent reason.
What my doctors are starting to understand now, years later, is that I was so affected by the car accident because I was a perfect storm of bad genes, PTSD related scars in my spine and on my brain, and birth defects; a ticking time bomb that exploded when I was hit, and set in motion a cascade of chronic illnesses.
Ehler-Danlos Syndrome is congenital, and it often comes along with a host of other rare conditions, such as Chiari Malformation, POTS, OI or other autonomic nervous system failures falling under the category of dysautonomia. Having a tethered spine, cognitive impairments, Occipital Neuralgia/Migraines, Trigeminal Neuralgia, TMJD, Spina Bifida, Chronic Fatigue, and Fibromyalgia are all associated as well, among many other issues. There are two scales to help you figure out at home if you may need to bring Ehler-Danlos up with your own doctor; one is called the Brighton Scale, and one is called the Beighton Score. Either one is accepted as the standard for diagnosing the disorder in the absence of genetic testing, but it’s easy to measure both scores at the same time.
BEIGHTON SCORING SYSTEM for Ehler-Danlos Syndrome:
It is extremely important to know if you have EDS, especially if female, one of the reasons being it can be an issue with pregnancy. In addition, it affects your connective tissues, which are not just in your joints, they are in your organs and throughout your body as well. It’s also important to know that if you suspect you have it, the treatment is not much different for EDS type III Hypermobility (the most common) as it is for severe Joint Hypermobility Syndrome, so even if you can’t get a formal diagnosis of EDS, insist on them writing the severity of your JHS in your medical charts for a more discerning doctor to pick up on later, hopefully, and then do physical therapy for hypermobility, but carefully and only under the guidance of someone who knows how to improve muscle tone around the joints without stressing them too much or risking them subluxing or slipping out!
There are 6 main subsets of Ehler Danlos, but even more variances than that exist within the condition when you get really technical. Some are much, much worse than what I suspect is going on with me. I have a friend I greatly respect and admire, who actually managed to acquire not one, but two forms of the rare disease in utero.
Here are the various types of Ehler-Danlos Syndrome:
The main six types:
Classic Type I, Classic Type II
Hypermobility Type III
Vascular Type IV
Kyphoscoliotic Type VI
Arthrochalasia Type VII A-B
Dermatosparaxis Type VII C
The actual meanings and specifics of all these diagnoses is variable and too lengthy to go into detail on here, but for more info, feel free to head over to EDNF.org (Ehlers Danlos National Foundation) which has a lot of good info for patients and physicians alike. I am still trying to hunt down a doctor who will agree to genetic testing, but in the meanwhile I am doing my best to learn to avoid subluxated joints and painful dislocations as much as possible.
“More than 350 million people worldwide suffer from a rare disease. If a disease affects fewer than 200,000 people in the United States, it is considered rare. There are currently about 7,000 rare diseases identified worldwide, and approximately 80 percent are caused by genetic changes. These diseases are often chronic, progressive, complex, life-threatening, and affect the quality of life.”
I was born premature. For many reasons that were unavoidable at the time, my mom was on medications that are now considered seriously unsafe to a fetus and one in particular which has been straight-up recalled by the FDA, called Terbutaline, to keep me inside, and to keep her alive while medical emergencies kept cropping up. It was not a fun pregnancy for my mom and it was her first, and I think in the disaster of incompetent doctors I just got lost in the shuffle. I was pronounced a healthy baby with a minor heart murmur and bi-lateral hip dysplasia, and no one even noticed the Spina Bifida and hypoplastic vertebrae. I can’t blame them, when you’re contemplating heart surgery on a preemie infant, I suppose there are enough things to worry about without actively looking for more issues. Now it is tested for regularly, and monitored for in families with a history, though it is not entirely clear if genes, environment, or more likely a combination of the two, are to be blamed for it’s appearance in a fetus. However, we do know that it happens within the first four weeks, and the risks of having a baby with Spina Bifida if you have it yourself are much higher than for someone without it, but are also greatly reduced by taking 4mg of folic acid a day. Doctors vary on how long a woman should be taking the folic acid for optimum results, but all say a very minimum of a month, some say a year, of taking a regular dose of folic acid and other prenatal vitamins before attempting to become pregnant.
My father has Spina Bifida Occulta as well, and the same cracking joints that get stuck, but he is the opposite of flexible. I, however, was a gymnast nicknamed “Rubber Band Girl” by my teammates because I was so damn bendy. My younger brother has Spina Bifida too, and is also still insanely limber and never ‘grew out of it’ like he was told, and has joint pain as well. I was much more active than him as a kid, involved in gymnastics, swimming, ballet, tee-ball/softball and just about anything else I could attempt my hand at.
My pain has skyrocketed uncontrollably throughout young adulthood, especially since my car accident, but before that I had pain that I thought was either normal or “no big deal” (although you could see by my declining test scores throughout middle and high school that it was a big deal) and tried to play it off in a variety of ways. I especially remember that getting picked up as a kid was something I dreaded with the wrong person, because too much digging in my armpits or hips or back was insanely painful. As a child and throughout being a teen, my hip used to pop out while I was lying in bed, and I would be frozen, silently screaming like the wind was completely knocked out of me until I could force it back in. But that was “normal”?
The Spina Bifida pain presented itself mostly as tailbone pain and low back pain throughout my childhood and teenage years. I could do more sit-ups than anyone else in a minute, in my entire grade, boy or girl, but I had to be on the cushiest stack of floor mats or I couldn’t even do one. Laying on a hard surface would make me sweat with pain. Again… why that was normal, I don’t know. Anything that requires lengths of sitting or lying on something hard left me wondering if I was going insane, or if I should tell someone how much it hurt. It took until last year to get a formal diagnosis of Spina Bifida added to my chart, but I am so glad I know now and that I know to seek medical advice before becoming pregnant, if that is an option for me at all in the future.
From my rambling about it, I’m sure you gathered that Spina Bifida is one of these rare diseases as well. It is widely screened for now, thankfully, and there is even a surgery that can be done in utero to close a hole in the spine of the fetus if the problem is very severe. People with Spina Bifida who are looking to conceive can obtain genetic counseling to see what their chances are of birthing a non-affected child.
I had planned to write more, and maybe I will come back and do some more work on this post soon, as I just learned that this entire coming month is dedicated to raising awareness for rare diseases.
Related Media for Further Research:
http://www.rarediseaseday.org/ – An organization dedicated to bringing to light rare diseases and their causal factors. Networking for patients.
http://globalgenes.org/rarelist/ – A comprehensive list of almost all known rare diseases, with links to organizations where possible. This website also has toolkits for various life situations that face patients and caretakers, as well as packets for starting a fundraiser for rare disease. They have quality images for spreading awareness through social media as well. Most of the ones I used in this post come from their press release packet.
https://www.rareconnect.org/en – Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally.
EDNF.org (Ehlers Danlos National Foundation) has a lot of good info, for patients and physicians alike. It also includes a section on how to find a diagnosis, and many of my friends have stated that emailing the organization can help push you through to an interested specialist as quickly as possible.
http://chronicillnessproblems.tumblr.com/EhlersDanlosInfo – An awesome collection of information assembled by a fellow blogger. Incredibly thorough and way more in depth than my little synopsis! She also has a wealth of links and research included, which is nice for those of us who like to learn as much as possible.
http://www.spinabifidaassociation.org/ – For 15 years the Spina Bifida Association has been seeking answers, spreading knowledge, and connecting patients. This website has a great selection of information for patients, practitioners, and caregivers.
Pick One Thing
Even in between flare ups I can only do one thing. One thing before I have to lay down. Sometime just one thing the entire day. I cannot shower AND leave the house on the same day. I cannot do light work in the vegetable garden AND make dinner in the same day.
In fact, any one thing I do choose to focus on could be the last all week, if I hurt myself!
So how do you pick which task gets your attention?
Before chronic illness I would make a list, and I did all the hardest chores as fast as I could. No matter how awful I felt. Powering through and forcing myself to do everything that everyone around me “needed” was my way of life. I swore by that.
As I developed more and more symptoms, inevitably that behavior translated into trying to ignore my pain and push on. I was in much more pain, cognitive issues were becoming a daily and noticeable problem, I was having much more severe flare ups, I was always anxious and I was even having suicidal thoughts for the first time since high school.
Now, three years in, I finally understand that overdoing it is a ticket to my own personal hell, and I don’t have to buy that ticket.
Only I can know what overdoing it means, and I am the only one who can give myself permission to take a break, change tasks, or stop altogether. Of course, real life gets overwhelming and self care can fall to the wayside during a crisis, but the important part is that this is a habit that is sticking. And I am learning gratitude as a result. In between flare ups, I am capable of doing one thing. That is something to be be grateful for.
I am learning that it doesn’t have to be frustrating picking where my energy goes. It can be freeing, too. I am acknowledging my limits and despite the chaos that causes and the emotions it brings up, I have faith that my life will ultimately be better as a result. I can focus on the good that is left, rather than what I miss. It’s a process, I still have days of utter and complete depression in the midst of a long flare up, and I don’t feel like there’s anything wrong with that. Thanks to chronic illness my life will be full of ups and downs that are much more dramatic than before I got sick.
Post-chronic-illness, I am sorting through the wreckage for the potential in me, the things that I value about myself even when my body is not as strong as it was. Being able to do one thing, even if it is sleep and recover all day, is a gift that I am finally willing to accept.
Enough
So many people I love and care about deeply are going through the toughest (I hope) times of their lives right now. To all you warriors out there who aren’t sure what the future holds, try to take it easy on yourself. You haven’t given up. You are trying your hardest. You are surviving. That’s enough, no matter what anyone else says. ❤
Chronic Pain Visualized #1
Chronic pain isn’t easy to express, not in words or pictures. I have struggled to express how chronic pain actually feels through art. My paintings are abstract multimedia pieces, and for the most part they’re just so I have something bright to look at around my house. They leave the onlooker with no idea that I suffer with every brush stroke, every adhered scrap, every swipe of the palette knife. These five artists, however, have managed to express so many of the things I feel every day, but have no idea how to show people a visual representation of.
Since I’ve been feeling particularly lousy and in way more pain than is even normal for me, I’m gonna go ahead and let this count as a blog post? I want to do a whole series on art relating to chronic illness, but we will see. I’m so disorganized!
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1. Of course, let’s start it off with Frida, who had a pain syndrome that many have speculated was fibromyalgia, as well as severe and debilitating chronic back pain which she has portrayed so clearly here. I have always loved this self-portrait, entitled “The Broken Column” even long before I developed clear symptoms of fibro:
#SpineDamage #NerveDamage #FracturedVertebrae #DegenerativeDiscDisorder #HerniatedDisc
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2. The damage done to my low back from getting hit by a semi truck. Now I feel like this when my back goes out, which is kind of a lot because of the addition of Spina Bifida Occulta and Joint Hypermobility Syndrome:
#HerniatedDisc #DegenerativeDiscDisease #Scoliosis #Lordosis #Osteoarthritis #EhlerDanlosSyndrome #JointHypermobilitySyndrome #SpinaBifidaOcculta
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3. Nerve pain, just imagine those lines about an inch underneath your skin, until it’s basically in your bones:
#Neuropathy #NervePain #NerveDamage
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4. This one reminds me so clearly of the one sided occipital migraines and trigeminal neuralgia which I am constantly dealing with:
#OccipitalNeuralgia #TrigeminalNeuralgia #OccipitalMigraines #TMJ
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5. Sad but true. This is what yoga feels like now. I am always telling my boyfriend that it feels like my spine is trying to rip clean free of the rest of my body, just like this:
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I’m not posting these for pity or for shock value, sometimes it helps me to have a visualization of my pain ,because it helps me to picture it disappearing while I meditate. Other times I just want to know I’m not alone. I’m sure I’m not the only one who feels a little bit validated when they see their chronic pain taken seriously. These artists take pain seriously, but they also managed to turn their pain into something creative. Using pain as inspiration for making beautiful things or things that others will relate to is a huge goal of mine as a formerly creative person. Illness can’t have my creativity, and these honest portrayals of the agony of chronic pain help me remember that art and the freedom it gives us is such an integral part of healing. Time to start painting again!
Stream of Conscience: The Chronically Ill Are Tougher Than Nails
Us spoonies are tough stuff. We deserve more recognition for how great we are doing when we undertake a task that is dreadfully painful and will probably cause later repercussions. Having the courage to do small amounts of work that healthy folks take for-granted; experiencing pain and fatigue at unimaginable levels, and persisting anyway, time and time again. Everyday with chronic illness is someone else’s nightmare, and still spoonies find a way to cope. That is bravery. When one of those magical, unscripted moments where we take our illness by the throat and tell it who’s boss finally does happen, we don’t want to be afraid that pushing ourselves will lead to someone using “well, you did it yesterday!” against us later. Just because we did something one day does not mean we are at all better. It could have even set us back a week or two, no matter how small the action.
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For instance, I drove my boyfriend to the hospital last month for severe hip and back pain. It was horrible. First time I had driven in over a year. I sat in the hospital sobbing like I was the patient that needed assistance. When we got to the ER, they immediately took my boyfriend and I back to a room, he talked to a doctor for a second, and then they gave him IV valium and dilaudid without so much as making him feel like a drug seeker, not one time. My boyfriend’s doctors kept coming in with boxes of tissues for me and judgmental faces, like I didn’t have a right to be in so much pain. I pushed myself way farther than normal taking him to the ER that day, and I was hurting, but pain alone doesn’t usually make me cry in public. Truthfully, I was also crying about the fact that I will never be treated that well in a hospital, I will always be treated like an addict when I am in the most need. I have been turned away from ER’s and Urgent Care many times because “they don’t manage chronic conditions, that’s what your primary care is for.” OMFG, REALLY?!
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Just like with me driving my boyfriend to the hospital, doing something once does not mean I can do it again tomorrow. The next day I was almost unable to get out of bed, and by “almost unable” I mean it took two hours and a handful of pills and I’d rather not talk about it. Pushing through the pain is not always the best choice for those of us with chronic pain, it can and will cause flare ups that are disproportionate to the thing that set them off. One less painful day or one easier week does not mean I am cured (but they are really, really, really nice!). Going outside will not cure my illnesses. Trying harder isn’t really an option since every single day I am trying with all my ability to not let this illness get the best of me. I am not a mooch, I am not lazy, I do not enjoy depending on others for help. I did not ask to be in this much pain or to burden the love of my life with my conditions. All I can do is keep putting one foot in front of the other, like so many others dealing with chronic illness and chronic pain. We are tough because we have to be. It’s not an optional character trait.
When I have these conditions in remission enough to drive, I will get us in the car and head straight for the coast or the mountains. I know my boyfriend wants me to be able to drive again. I do too, so much! But wanting is not the same thing as being able to make it happen. It’s beyond frustrating… it’s a kind of frustration and desperation that try to drag me deep down into depression. I want to be able to assume these responsibilities again, I really do, because emotionally it felt great to drive him somewhere when he needed me, but the way my body reacted to all the movement, walking, sitting, twisting, was enough to convince me that my driving days are on hold again for now.
Despite the pain and restrictions of having several chronic pain conditions, my favorite phrase is still “I can do it” even when I really can’t. It might have taken me an hour to get that glass of water, but damn it, I did it myself. I try to push my limitations as often as I get a chance, in order to feel human.
Healthy or chronically ill or somewhere in between, we all push our boundaries to feel alive. It’s the difference between existing and really living. I’m going to keep pushing myself as so many other spoonies do on a daily basis, and if that allows me to get back to driving eventually, even better! I’m tired of hearing what I “should” be doing… instead I’m just going to do what I can and be happy about it, every day. To everyone else out there struggling with what others think you should be able to do, it gets easier to stand up for yourself every time! No guilt, we didn’t ask to be sick!
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