We’ve gotten our store open in record time and we want to celebrate with you by giving big discounts for our Grand Opening. From now until December 1, use our exclusive code to get 25% off every order! Just read on to get your code and visit the store. First, we’ve got a wee bit of business to cover and we hope you’ll read on to learn more about what the Zebra Pit Shop is all about and our plans for it!
Why Open a Shop?
The easiest answer to this question is that it helps us to keep doing what we love to do, and that’s bring health and wellness information and resources to help people with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders and/or their common comorbid syndromes and conditions. This includes ME/CFS, Fibromyalgia and other soft tissue pain disorders, MCAS and other MCADs, POTS or other forms of dysautonomia, gastroparesis, IBS, Chiari, CCI and other cranio-cervical junction disorders, migraine, degenerative disc disease and related disorders, arthritis, costochondritis, and so much more we could spend all day listing them. Here are a few more reasons we opened our shop:
To provide products that raise awareness and help build a sense of community in ways unique to a variety of personalities and that are reflective of the times and spoonie life. It’s our mission to make EDS and all of its comorbid conditions well known across the world and these products help us serve that mission both literally and figuratively.
To display and sell some of the wonderful items we’ve found that truly help with some of our most difficult to solve symptoms. While we could just continue to act as an affiliate for some of the products we’ll be adding, this means the Zebra Pit gets a little more of the cut and has more control over what we can do with those funds.
So we can support the organizations that are making the biggest impact on these conditions. They all have a mission to fund research, educate doctors and patients and raise awareness. The Zebra Pit will be donating 5% of the proceeds we make and YOU get to decide which organizations this money goes to on every purchase. To learn more, visit our Giving Program Page.
So we can better support the community we serve by getting the best prices possible and ensuring you always have a place to get the things you need to help you achieve your best health. Whether it’s a product we’re recommending or a post about promising therapy techniques, you know it’s all vetted by people who share these conditions, Understand how it works and whether it needs to be modified. We always want you to check with your doctor before taking any of our advice, but it can be reassuring to know that something works for similar people before investing the money on it.
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In addition to the plan to add on as many of our recommended health and wellness products, we have several goals we hope to attain as we grow:
Adjust pricing as we grow. We may not get the bigger discounts to begin with, but as we grow and they come along, rest assured the Zebra Pit will be sharing any decreases we see with our community. We understand the financial toll of chronic illness because we also live with chronic illness.
To provide a comprehensive specialty shopexclusively for spoonies and medical zebras that include supplements, therapy devices, health and fitness gear, a whole slew of over-the-counter remedies, CBD products, books both informational and entertaining, self care and personal care products, mobility devices, and more.
To provide products which are ideal for most people with sensitivities to use. For example, while I couldn’t find tagless shirts for our printed products, everything we’ve selected has tear away tags for easy removal so those of us living with any level of sensory overload can feel good in our clothing.
To work toward creating and offering some of our own products.
To source our products as ethically as possible.
To support our community and customers by implementing fair practices and providing good quality products.
Shop with Confidence
In regards to our awareness products, if the item you receive arrives damaged or is not printed perfectly, you simply need to send us a photo and we’ll send you a replacement that’s printed just for you.
If your order isn’t right, we’ll do our best to make it right as quickly as possible.
If you’re unsatisfied with your purchase, ordered the wrong item or size, you can return it to us for a refund of the product price or exchange within 30 days, provided it’s returned in brand new condition.
As we grow, these policies may change, but our commitment to quality will always remain. To view our shipping and return policies, click here: Shipping and Return Policy.
Other Changes Around the Pit
I’m sure you’ve noticed that our menus and structure has changed recently to accommodate our store. We like our new design quite well, but it may take some a bit of time to get used to it. Here are a few tips that may help:
Our Blog page looks quite different, but it now has 3 different ways you can view our posts. My hope is that it offers something to suit every browser.
The first is a 20 post carousel that shows the featured image, title, date and brief description. It always begins with the most recent post.
The second section is an image catalog of our sections, so you can view posts by subject.
Finally, our last 100 posts are listed at the bottom so you can scroll through them much like our old page, but they only include titles, dates and descriptions.
Finally, we have everything arranged in convenient drop down menus in our header (the upper purple section) you can access both on a computer or smart phone. To go to the blog, simply click the word “blog.” To visit a specific section page, choose it from the drop down menu.
Search Boxes: As always, we have a search box near the top of the side menu so you can search for anything you may be looking for. If it’s an item from the shop you seek, use the search box in the purple header instead.
Now finally…. the news you’ve waited so patiently for…..
Now that we’re done with the boring stuff, why not take a tour of our shop? Be sure to take this code with you:
The code is good for 25% off your entire purchase on anything in our shop. Want to shop more than once? Use it as many times as you’d like! The best part? While everyone else is having “Black Friday,” “Small Business Saturday,” or “Cyber Monday,” sales, our grand opening sale will last two weeks! From today through Sunday, December 1, 2019.
Can’t afford to shop right now? If you reside in the U.S. you can enter to win 1 of 3 prizes in our Name Our Mascot Contest between now and November 25, 2019.
Now that I finally have a diagnosis of Ehlers-Danlos Syndrome (EDS) and have a complete picture of my health, what I believe went wrong to make me so sick and the ways I’ve worked to combat many of those problems, I felt it might be constructive for myself and others if I took the time to examine my personal history. EDS is not something that “just happens suddenly” for most of us. There are many signs and clues along the way and if you take heed and learn early how to care for an Ehlers-Danlos body, the odds of living a longer, more healthful life with full mobility are much more likely. It is said that EDS is not a degenerative disorder, however it is a disorder that can bring about loss of function due to mechanical failure, and those failures can never be fully overcome. That’s why early diagnosis and active protection in the form of prevention are vital for zebras.
Unfortunately, I didn’t have the benefit of knowing early. Though I felt from a very early age that there was something wrong, my family had a long standard of denying our pain, not going to doctors unless something seemed serious and life-threatening and encouraging each other to just suck it up, because “that’s life; just deal with it.”
When I spent my childhood catching every flu and virus rampant in our public school system and developed bronchitis and sinusitis four to six times a year, no one questioned it. When I constantly sprained my ankles and complained of leg pain, I was told to suck it up. Any link between frequent bouts of tendonitis and our strange hypermobility was never questioned. When my gymnastics coach got a load of my flexibility, she was thrilled to have me join the team, only to tell my stepmother at the end of the year that my poor proprioception and motor skills made me terrible gymnast material and I wouldn’t be invited back. When I complained that standing in one spot or working on my feet for longer than an hour brought me severe pain, I was being a drama queen, but these were all early signs that I had the same incurable genetic disorder that many of my family members had, only it wouldn’t come to affect them in any noticeable way until they were much older, or at least if it had, they didn’t feel it was enough to bother with or were told the same things I had been told; that what they were feeling was nothing unusual and nobody cared.
These were just a few of the signs of EDS in my early life. Other things are more obscure, but just as important. For instance, I was always dropping things, running into doorways and tables and tripping on perfectly flat ground. I was a real klutz. This is due to joint laxity and poor proprioception. When your joints are loose, your brain can’t properly place or guide your body.
I also suffered from a wide variety of allergies from an early age and they have only continued to grow throughout my adulthood. I started out with allergies to certain soaps and cleaning products and my allergies grew to include most common outdoor allergies, all synthetic dyes and perfumes, some nuts and fruits. Now I have a wide range of allergies and intolerances that range in severity from anaphalactic reactions to headaches and nausea and I strongly suspect I have the common comorbid condition of a mast cell activation disorder and am seeking the help of a specialist in that area. This is likely what caused all of my respiratory infections, combining inflammation and congestion with a weakened immune system.
I also suffered from a lot of gastric problems. I often overate because my stomach felt unsatisfied after eating. I don’t know if it’s because of the bendy nature of our soft tissue, a lack of proper signaling in my nervous system or because of acid reflux issues, but my stomach often insisted I was starving and I had a great deal of difficulty denying it. My hormones also fluctuate quite wildly, which is also common in EDS and could have been a contributing factor. Whatever the cause, weight gain and obesity are fairly common in EDS and is a family-wide issue for mine.
My first taste of serious joint injury came after my first year as a certified nurse’s aide at nineteen. According to the doctor who treated me, I damaged every muscle in my lower back and it was over two weeks before I could stand without excruciating pain. I have a feeling I herniated both my L4-L5 and L5-S1 that day, but it would take me another decade to convince a doctor to do an MRI or CT to check, despite putting my back out at least yearly thereafter.
In my teens and twenties, I often missed work or school because I was plagued by chronic infections and periods that were extremely heavy and brought intense cramping that I simply couldn’t bear on top of 8 hours of excruciating foot and leg pain that would leave me nauseous, shaking and sweating. In desperation or emotional outbursts fueled by pain, I’d quit jobs, sometimes walking out without notice, convinced I just couldn’t survive another day. My mother told me I was incapable of controlling my emotions and too stupid to recognize the value of a paycheck. I felt worthless and stupid and became stuck in a cycle of failure because manual labor or customer service jobs that would only bring more pain and end in yet more failure were all I could get hired to do.
I began experiencing odd dental problems. Because the women on my mother’s side of the family had this uncanny history of losing their teeth after giving birth to their first child, I was downright fanatical about my dental care. Still, I was amassing cavities at an insane rate and had developed gum disease at a very early age. My teeth would even crack and splinter. I broke a tooth on a piece of candy and had a tooth disintegrate around a filling. Worse, my pallet was so narrow that when my wisdom teeth started to come in, they threatened to oust my molars, because they wanted to grow in right on top of them. At the dentist, it would take three times as much Novocain to numb me and I would have to wait twice as long for it to take effect. Then it would take all day for it to wear off. My teeth have been so sensitive for decades now that despite using the best sensitive toothpastes and soft electric brushes on the market, simply breathing through my mouth is painful. Eating is at times utterly intolerable and sometimes they ache for seemingly no reason at all. I think all the time about removing those I have left and just being done with it, though I have only lost 3 to date.
By the time I made it through my first degree—an attempt to escape manual labor and a hope to do something more personally and socially meaningful—my fatigue and pain were to the level that even working a desk job was a great challenge. The physical portions of my administrative job was becoming more and more difficult for me to perform and I worried constantly that people thought me lazy or uninterested in doing my best, though that’s always been contrary to my very nature. In college, I tore my Achilles tendon making the usual hike up two stories of stairs in a building that was constructed long before there were elevators or laws about them and the pain of that injury never subsided completely, nor any other, just as it had been with every torn tendon or ligament. In the course of trying to stay healthy and active, I suffered tendonitis in so many parts of my body, I’m no longer sure I have any tendons I haven’t injured.
In college, I began to push a bit about whether there might be something more wrong with me. I remember having a couple of doctors run panels on me for connective tissues disorders, but none of the usual suspects appeared. Still, I had felt something was wrong for years and I was beginning to suspect I was right. In 2001, at the age of 29, I developed focal segmental glomerulosclerosis, a rare kidney disease that was even more rare for my particular demographic. It moved rapidly, killing 10% of my kidney function in less than 6 months. I was certain it was going to end in kidney failure, but miraculously, it reversed in less than a year and I made a complete recovery. I now believe that it was caused by the pesticide laden well water I was drinking in our farmhouse and am not surprised at all that this time brought about my first fight with fatigue, achy joints and irritable bowel syndrome, as well.
Still, it wasn’t until almost my mid-thirties that I began to insist to my doctors that there was something seriously wrong. I’d begun working out regularly and eating healthy. I lost sixty pounds and lived a healthier lifestyle than ever, but still the pain and fatigue could not be subdued and my back was becoming a near daily problem, shooting pain from my lower spine and spilling down my right leg. I related my ever growing fatigue with the pain I lived with daily that was sometimes completely crippling and at others a dull ache. A CT revealed that my two lowest discs were herniated, along with one in the thoracic region and two in my cervical spine. Eventually the pain turned from occasional to relentless and severe, forcing me to leave my job, a third of the duties beyond my ability to handle. When I finally gave in and accepted a surgical option to repair the discs, I thought I’d be home-free from that terrible tiredness, able to work and function normally again.
The first surgeon I saw wanted to do a spinal fusion, but I wasn’t comfortable with having hardware put in, especially since I already had so much deterioration in my back, so I went to another surgeon. The second surgeon agreed. He felt a discectomy/lamenectomy would be appropriate. In September of 2009, I came out of back surgery with raging nausea and a right leg that buzzed like an angry beehive of numbness, but the unending severe pain I’d become accustomed to had vanished and has remained a rare visitor ever since. Only on special occasions does my back pain return, but that angry beehive fell to a dull buzz and with fascia therapy, I’ve managed to work the numbness down to a couple of spots on my right foot. Hopefully with time, I won’t have any left.
A few weeks out of surgery and I was bound for physical therapy. The only problem; I was still in pain in many other parts of my body and the fatigue I had associated with living in that level of constant pain never subsided. If I look back at my history it makes perfect sense, but at the time, I was flabbergasted. I couldn’t walk a mile without being wiped out for the remainder of the day and so complained to my General Practitioner (GP) at the time, a newbie in the residency program at the local hospital.
“So, I’m through the surgery and my back feels worlds better, but I don’t feel better. I’ve got no energy to do anything and no matter how hard I try to build up stamina, I only seem to have less energy instead of more. I ache all the time, all over my body, my joints all hurt something awful and I can’t seem to get back to where I was before the surgery.” This was all the description she needed to perform the tender point test for Fibromyalgia. She would press in a spot and get a rise out of me. “Ow!”
After six or so of these ow’s, she stopped, explaining to me that she was only applying the minutest of pressures to these tender points. Did it really hurt so bad, she inquired? It did. After apologizing, she went on to test the remaining tender points, excitement becoming a mixture with the keen intelligence that showed on her face. By the time she finished, she had confirmed pain in 14 of the 18 spots she knew to test.
It felt like déjà vu, this test. Barely a decade earlier I’d seen it given to my ex partner. Even then I wondered if I too should be tested, but fear of stigma forced my silence.
“Do you know what this means?”
“I have a feeling you’re going to tell me I have Fibromyalgia.”
“That’s right; undeniably so. This is the cause of your pain, your fatigue, your sleeplessness. I’m going to write you a prescription for a drug that usually helps quite a lot with the sleeplessness, which should also decrease your pain and of course the fatigue. It was once used as an anti-depressant, but it’s been found to be much more helpful for FM.” She handed me the prescription that read; Amitriptyline, 50mg. “Take one of these every night before bed and let me know how it does.” She wrote me an additional script for pain medication, making me sign a contract that stated I wouldn’t accept pain medication from any other doctor.
I’ve never been so thrilled and petrified at the same time. Finally, a doctor who validated what I’d been feeling for years, an actual diagnosis, which meant something could be done about it. Boy was I naïve. The wonderful resident who diagnosed me graduated and moved on to a shared practice, one that didn’t accept my insurance. Her former Resident Supervisor was not of the same opinion as to the nature or truth of an FM diagnosis and when I went in to ask for additional treatment, I faced my first instance of prejudice about my illness. I wasn’t sick, she told me, I just needed to exercise and lose weight. For two years this woman tormented me every time I came in, regardless of what resident I was assigned to, with lectures about my diet and my physical fitness. Of course through all this she could have at least attempted to be helpful in that regard and given me some meaningful information or written a script for physical therapy, or anything of the kind. Instead, she’d deny me any and all treatments and refused to give me any more pain reliever, intimating that I was a drug addict seeking a fix.
You might think that I should have stormed out of that office never to return right off the bat and maybe I should have. But to think so is to deny a serious issue with the American medical system and to ignore the history of the medical community’s denial of Fibromyalgia as an actual disease instead of a catch all for “we don’t know what’s wrong with you”. This is something I knew all along and it bred in me a certain level of doubt, despite what I was experiencing with my own senses. So I put up with it, swearing I’d find another doctor soon, but dreading that a new doctor would think the same way. It wasn’t until what little relief I’d been getting from the Amitriptyline began to fail me that I was finally forced to make a move.
When I finally did, I was sent to a rheumatologist who gave me an additional diagnosis of Chronic Fatigue Syndrome (ME/CFS), but I wasn’t satisfied with this diagnosis, as it’s a sudden onset disease and I knew whatever it was that I had I’d probably had my whole life and that what was going had been compounding over the span of my life. Still, I learned everything I could about the disease in an attempt to take the best care of myself possible. The rheumatologist tried many drugs with me, but all of them failed because they were either too much for me to bear or simply had too many side effects.
During this time, I also started experiencing dizzy spells when I was standing or would try to reach up in a cupboard for something on a high shelf. I passed out in the middle of the post office, simply crumpling to the ground like I was one of those inflatable flailing arm tube men outside a Jiffy Lube and someone cut the air off. It took five years to get diagnosed with POTS.
I also began to experience severely dry skin that only got worse with exfoliation and had to change from my usual bath products to special oil based shower gels to avoid growing great dry patches that I suspect are psoriasis, but have never been biopsied. I also have to condition my skin with coconut oil and curel daily to avoid outbreaks. As my mother suffered from psoriasis, too she taught me the dos and don’ts and so far, I’ve managed to get along.
My late thirties also brought with them scary and excruciating bowel infections such as diverticulitis and c-diff (clostridium difficile), all too frequent staph fueled boils, UTI’s and kidney infections; All this plus the amazing ability to contract any flu, virus or infection of every person who ever stood within a 10 foot radius of me or my husband who seems ever the viral incubator though he’s rarely ever sick. I was constantly on antibiotics and I began experiencing frequent subluxations and dislocations, even in my ribs. My migraines went from occasional to almost daily to where they never stopped, leaving me so sensitive to light and sound that I couldn’t leave my bedroom and would spend days vomiting. Between that and my untreated POTS, life was completely unbearable and I was bedridden for all but a few hours a day most of the time.
In 2015, constant abdominal pain, irregular periods and continued severe cramping finally drove me to seek a hysterectomy. At times, I would bleed for a month. It turned out I had endometriosis, but because I wanted to have children, no gynecologist ever felt it necessary to tell me this. I still scratch my head over this. Patients need all the information to make a decision and no decision was ever presented to me, only the question of whether or not I wanted kids. I was always honest that yes I wanted children, but it didn’t seem possible, as I had tried and been unable to conceive. Why, in all the OB/GYNs I saw over tge years did none tell me point blank that I likely had endo? I have no faith left in the medical industry. Along with endometrial tissue, there was a ton of scar tissue. From what, they couldn’t say.
Then sometime in 2016, I came across some memes during one of my brief excursions on Facebook talking about a connective tissue disease that I’d never heard of called EDS. I decided to give it a look, since I’d been through testing for literally every disease my rheumatologists, neurologists and GP’s could think to test me for. After reading extensively about EDS, I felt like I’d finally found the disease which explained not just some of what had been going on with my body for some of my life, like ME/CFS had, but what had been happening my whole life. It also explained a great deal about my family, all the way back to my great grandmother.
The only problem was, there didn’t appear to be anyone who knew how to diagnose the disease. It’s said that EDS is a rare disorder. Many of us disagree. The problem is not so much that it’s rare, but rather that it’s rarely diagnosed because it’s rarely taught in American medical schools. I’d been trying to get a diagnosis for at least 17 years, been seeing doctors for EDS related problems my whole life, and didn’t get a diagnosis until I figured it out for myself and sought out a qualified doctor who knew how to diagnose it when I was 45.
Had I known sooner, I might have joints that aren’t so severely damaged by years of abuse. Had I known sooner, I might not have such severe POTS. Had I known sooner, I might still have a fully functioning digestive system. Had I known sooner, I might still be working. Had I known sooner that endometriosis was a common comorbid condition, I might not have fought having a hysterectomy as long as I did. So many “had I known’s.”
Now that I have the proper diagnosis, my hope is that new symptoms won’t take so much time to address and treat because it’s fairly well known what comorbid conditions are common to EDS. It’s also much easier for me to get connected to the right specialists who know about my condition, now that I have the support of my local EDS group. No, EDS is no curable and there’s really very little that can be done to reverse any of the damage already done, but I can work to preserve what I have, try to prevent further damage and work with specialists to try to treat what I have as well as possible. It’s not great, but it’s certainly better than going to doctors who want to blame the consequences of my disease as the cause of my problems.
I no longer feel so alone. Though I felt certain this is the disease I had once I was finished researching it and began to enact positive changes that made a big difference in my life right away, I still felt alone and a bit helpless about the things I couldn’t change until I got that official seal of approval. I could change my diet, I could do my own fascia therapy, I could learn about safe exercise for EDS and implement it in my life. I could even research and start taking a wide variety of supplements to help myself feel better and I did. But I can’t do anything about the suspected chiari or CCI all by myself. I can’t do anything more to help my suspected gastroparesis than I already have. I can’t treat my mast cell any better than I already do. As a layperson with only so much knowledge and no medical equipment, I will always need a doctor to partner with me in my care. And let’s face it; it’s hard enough to get them to believe you’re sick in the first place. Having a primary diagnosis can be the difference between them believing you have all these strange comorbid conditions and not; a huge obstacle to getting the testing you need to find out and start getting treated for them. That’s why I’m a huge proponent of getting diagnosed, no matter how hard you have to fight and no matter how long.
There are obvious signs of EDS in most of my family members and we are probably all affected to some degree. My mother developed a lot of the same problems I had, only she was 20-30 years older than I was. My sister has a lot of symptoms, but they haven’t been disabling, thus far. My brother likely has MCAD. My grandmother and great grandmother both had a wide variety of problems that fit EDS, my grandmother spending the last 25 years of her life in a wheelchair because of spine and hip deterioration. For the most part, no one has been incapable of working throughout their adult lives except for me and it really messed with my head for a while.
So what’s different about me? First, it’s important to note that how EDD affects anyone can be drastically different from how it affects another, even in the same family. Also, environmental factors, how you take care of yourself and emotional stress can have devastating effects on a zebra. My upbringing was anything but emotionally stable and secure (you can read a bit about that here, but it’s somewhat repetitive to this) and while we all had it bad, it seems like I got the lion’s share of the abuse and neglect. I had the responsibility of raising myself and my little brother, I was looked on as the family-carer and acted as the family scapegoat after my eldest sister left. I also had to deal with being intermittently homeless as a high school student and dealt with a great deal of shame and hurt that my mother refused to protect me from her homicidal husband another way. I also dealt with a great deal of shame surrounding my sexuality well into my twenties and a great deal of physical and emotional stress because of my weight and over sexual abuse I’d experienced as a child and a teen. My siblings all have some of these things, but not all and while my sister had gastric bypass surgery to lose her weight in her early thirties and males generally don’t see the same level or severity of symptoms as women, it’s not surprising that neither of them would be as affected.
Also, with my immune system being so poor (partially contributed to by diet, I’m sure) and having so many infections, the antibiotics probably contributed a great deal to the damage of my mitochondria, accelerating the damage to my soft tissues and neurological cells. I’m also certain that all those manual labor jobs, my love to go club hopping and dancing, hiking and generally being constantly on the go did nothing good to help my joints. From what I know now about how to protect the joints, I was doing everything wrong.
In addition to this, nutrition is extremely important with EDS and what our government recommends isn’t really healthy because it’s been motivated by what our most plentiful crops are here in the US rather than what’s most nutritious for our bodies and it took me a long time to realize that. Not only do we need to be very aware of what foods we’re putting in our bodies, but we need to be aware of the chemicals that come with them, avoiding exposure to pesticides, preservatives and non-food addatives that can make us very sick and compound our already complex problems. I talk about this in depth here and here. We need to be aware that we often develop conditions that cause malabsorption and cause malnutrition. We need to supplement what we lack to prevent many of our symptoms, as they can sometimes be signs of vitamin and mineral deficiencies.
It could have been any or all of these things. It could have been none. Likely, it lies somewhere in the middle. Whatever the case, I no longer feel guilty about my illness in whole or part. It simply does me no good. All I can do is to try my best now and in the future to take care of myself the best way I know how to try to achieve the best outcomes and future that I may. That’s all any can ask of ourselves.
In my next article, I’m going to cover everything I’ve done over the last year (since I suspected EDS was the right diagnosis) to start getting my health turned around, including links to articles I’ve written that offer a step by step approach to how you can, too.
What happens when people, working in healthcare, choose to ignore pain and suffering? What happens when a patient or caregiver complains? Here’s an eye witness account of what happened to one young woman.
Jess Jacobs, MS, a 29 year old graduate of University of California-Berkley with a masters in health systems administration from Georgetown University, died on August 13, 2016. She was an online patient activist, a sister, daughter and friend. Many remembrances have already been posted. Whitney Zatzkin’s is a beautiful tribute.
“I had a flashback while starting this post, to the first day of my third year of medical school – the first day…that medical students spend time in the hospital helping to care for patients….at evening sign out, the medical resident in charge of our education and safety taught us the acronym “NMP.” It stood for “not my problem,” uttered after a beeper page was responded to about a patient that was not under our care. That moment conveyed important messages to me – that this was going to be brutal, and she was going to shield us, which she did. I would only later ask the question, ‘from what?’”
A Casualty of “Not My Problem”?
Jess had invisible diseases (in social media parlance-a spoonie), Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome (POTS). Ehlers-Danlos is mainly an inherited, connective tissue disorder–characterized by loose joints, and fragile skin–but which can affect other organs. Although Ehlers-Danlos Syndrome is classified as rare, the Ehlers-Danlos Society states that it is may be more common than the stated prevalence of 1 in 2500 to 1 in 5000.
According to Dysautonomia International, POTS is not rare, affecting between 1 M and 3 M people in the US. It is a disorder of the autonomic nervous system, the part of the nervous system that controls body functions, like heartbeat, digestion and breathing. Diagnosis of POTS is difficult but one of the symptoms is dizziness and fainting. A person with POTS has an increase in their heart rate when they stand up, their total amount of blood may be low, and they may have an increase in norepinephrine in their blood.
Jess fainted often.
After getting her degree at Georgetown, Jess worked for the Department of Health and Human Services in mhealth, telehealth and health innovation. She left the federal government to work for Aetna as a Director with Aetna’s Innovation Labs. Being an innovator, she embraced patient engagement and joint patient-physician decision-making. This, along with her health systems background and innate intelligence, is why, when she interacted with the healthcare world, she pushed.
POTS is a rare diagnosis, and I am by no means a specialist in the treatment of it. I cannot comment on whether treatment with opioids is the best route or not. My only suggestion was that it might be prudent to see another POTS specialist for an opinion. It might also turn out to be helpful to see the Rheumatologist and Neurologist to see if they have any thoughts or ideas.
I know this is beyond frustrating for you, feeling poorly and not having any therapies pan-out with respect to making you feel better. There are no clear answers when it comes to POTS.
I know all too well how complicated and rare POTS is. I’ve lived with this diagnosis for five years. It’s ok that you are not a specialist in the condition. I am….As to the realities… I haven’t left the house to go anywhere except physician appointments this year. I have a wheelchair….
As to the pain and condition prognosis, please remember that POTS is secondary to my underlying Ehlers-Danlos…the reason my joints swell, pop in and out of place, and are a source of pain…
The majority of my friends are allied [to] the healthcare field… and all ask “who’s coordinating all of this?” to which I say I am and then they all stress about who is going to take over when I start puking and can’t get off the floor on my own.
I’m not sure where they got the notion that my primary care physician should coordinate my care, maybe they were looking at NCQA’s patient centered medical homes model, or found a copy of the Accountable Care Organization regulations from CMS…. All I know is that they all say that a PCP is the person to coordinate care.
By telling me that my condition is complex and stating that I should just see additional specialists, you are surrendering….So, this leads me to ask: If you are not willing and able to help me, who in your practice is?
A Casualty of Engagement? Social Sharing
Although the above letter is confrontational, Jess was also a funny person who shared her experiences during her many hospital stays with humor and warmth. But she could not stand idly by. In one DC hospital stay, she described having to use her cell phone to call the nurses station for herself and her roommate.
My roommate, admitted for a Sickle Cell crisis, cried hysterically for over 12 hours while her pain remained unmanaged. During this time I called and emailed the patient advocate several times on my roommate’s behalf and ‘rang’ the nurse countless times. Eventually my roommate’s attending came to see her. Unfortunately her physician … insisted my roommate’s issues [were]related to positive thinking and refused to revert to a pain regimen that had apparently worked before. I’m not a physician and have no idea what pain medications this girl should have been on. But as a human I know that “Tears = Bad” and anyone that cries for twelve hours while begging someone, anyone, to call their physician of record isn’t faking it. She didn’t stop crying until a doctor with some humanity sedated her following shift change. The complete disregard for her pain stripped her of her dignity and brought me to tears.
She also experienced unsanitary conditions which she shared.
When Dr. Y visited me during a two-week stay in July, I thought Hospital X had hit rock bottom. During this stay my roommate’s bloody vomit sat clogged in the sink for three days before someone came to plunge it.
But her excellent education in healthcare systems unfortunately didn’t help her. She lived in our nation’s capital surrounded by huge healthcare institutions that are some of the best in the US. Yet healthcare failed her. When she pushed back at healthcare leaders, she experienced resentment and push back in the form of loss of healthcare services.
“Being facile with Google, having open data, and APIs galore can’t save people who at critical times need a good doctor. Not friends who are doctors, your own doctor who prioritizes your health and does what needs to be done…Despite the good intentions of the let patients help community, patients can’t play doctors. …[doctors] do have a purpose though, and they (the doctors) cost society a lot of money to create. We should be made to deliver the value on the debt we owe society for allowing us to be who we are. But then, are patients ….strong enough to make this ask? Based on being an hour in the hospital with Jess, post-getting-yelled-at, post-merciless gaze from the people in the white coats, I’m not sure, and it’s not fair.
I guess then, it’s “let patients help” and “make doctors help.” Or actually, it’s “create doctors that help.” There’s a concept in medical education known as the “hidden curriculum.”
Realizing that it was likely that my engagement was going to do more harm than good, I limited my engagement. So did many of the doctors that she interacted with. The difference is that those doctors were her doctors, paid to work on her behalf. Their training must have been the same as mine because I could tell the acronym “not my problem” was underlying a lot of the behavior.”~Ted Eytan, MD
What about the people who don’t have the resources, the education, the friends and connections or even access to hospitals?
“In the BPM organization, delivering customer value and optimizing process performance are two central goals….This discourages the “not my problem” mentality and the practice of throwing issues over the functional wall.”
But “Not My Problem“ NMP is about ethics. In this reflection on the Modern Hippocratic Oath that medical students repeat upon graduation:
It is particularly evident in this modern era when more students are choosing residencies in radiology, anesthesiology, and pathology for the sake of their lifestyle. [They] tend to openly complain about excessive clinical workload despite obvious patient needs. Many of these individuals rationalize a “shift-mentality” as their future practice of medicine that justifies going home when they are “off-duty” despite any other professional obligations. It appears that “job quality” is a priority when compared to “professional duty” in the medical practice of these particular future physicians.
Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient. Instead of becoming an advocate and/or protector of society’s weakest element, they would discard this needy population in preference for the medical procedure, economizing their clinical practice or optimizing their time at home with family and friends.
“I solemnly pledge myself before God and in the presence of this assembly, to pass my life in purity and to practice my profession faithfully. I will abstain from whatever is deleterious and mischievous… With loyalty will I endeavor to…devote myself to the welfare of those committed to my care.”
Anymore it seems every time I go in for a consult with a specialist, I’m in for a real mind-fuck. I guess I shouldn’t be surprised, I am consulting with neurologists J. It took me several days to process the experience of meeting with the neuro-muscular specialist before I could decide exactly how I felt about him and the chances that he’s going to give treating me and my ailments. In part, that’s probably because I suffer from some pretty significant cognitive deficits and by the time I hit his office, I was in full flare up mode from the immense mental and physical stress of the experience. It’s also because he’s clearly uneducated about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and wasn’t exactly open to engaging about it or my suspicions surrounding a possible alternate or comorbid diagnosis of Ehlers Danlos Syndrome(EDS): However, he did take all of my symptoms seriously and had some good alternate diagnoses to explore, so I agreed to undergoing more tests, some of which will be excruciating, but them’s the breaks. What’s most interesting of all to me, was my emotional reaction to all of this.
I can already tell you the battery of blood tests he had drawn have come up completely negative. This is not at all surprising to me, as I have yet to have a helpful blood test and that’s pretty normal for someone in my position. The tests I do expect to be more telling are the excruciating ones that come in September and will be testing my nerve and muscle tissue. The diseases he is looking at are Myasthenia Gravis (MG), Sjorgren’s, various Mitochondrial diseases (ME/CFS is a mito disease, but he didn’t know that, either), and he did the blood work to make certain I don’t have Lyme disease since I’m not certain anyone has crossed that off the list (Lyme is commonly misdiagnosed as ME/CFS).
I’m fairly certain that the tests I’ve been through already have ruled out Myasthenia Gravis, Sjorgren’s, and Lyme, though I’m not completely sure about MG, as I know muscle biopsy is used as confirmation. Muscle biopsy can also be helpful for ME/CFS diagnosis and tissue biopsy is definitely necessary for diagnosing other forms of mito, so I’m all for getting it done, pain be damned. Hell, I’ve had a kidney biopsy. What’s a little muscle tissue?
What I’m not looking forward to is another EMG, an even more painful kind than I had before. The first was excruciating enough. In fact, I thought the whole time about the human subject review board and how it ever got approved for testing let alone for regular use on patients. This type of EMG involves a series of shocks in the same place rather than just one and then moving on to the next appendage. Apparently, this tells them something about signal interpretation or…. Who knows. I was wearing my ME/CFS/Fibro brain. Yep. I’m so thrilled about this, having fibromyalgia and neuropathy and all, which means that my pain responses are set to super-duper-mega-sensitive. Perhaps this is why I feel it’s inhumane. I forget everyone doesn’t feel things the same way we do sometimes.
As much as I’m not looking forward to these tests, they need to be done so I can either get a change in diagnosis and get treatment –OR—finally know for sure that I do have the correct diagnosis and if I can’t get this new doctor, who while misinformed about ME/CFS seems quite intelligent, on board to treat me for ME/CFS, then it’s time to move to a place where someone will. Of course, I still need to find someone who can say yay or nay to the EDS suspicions, too.
By the time we got through my symptoms at the appointment, I was a worn out dishrag. I just had nothing left. I’d had an attack (right in front of the doctor, yes!), I was exhausted and starting to get confused, so when he went for the door, all I had the thought to do was to hand him all my very carefully chosen research, which he looked at like a venomous snake, and try not to cry when he left the room. We never discussed my medications, next steps, whether or not he was actually taking me on as a patient, nothing.
I don’t operate well this way. Unless it’s a book or play, I like to know what’s coming next. It also left me in the position of having absolutely no pain meds so I had to go begging my GP like a dirty druggie (that’s how his office always makes me feel, though he doesn’t). As a result, the GP cut down on some of my meds, but as a bargain he gave me a steroid. I don’t know if that’s good thing or not. I’ve been hearing more and more about steroid use being bad if you have EDS. If that’s true, the last rheumatologist really wasn’t been good for me, or I should say even worse than I thought.
Anyway, I wish I had thought to say, “I know you’re skeptical of the ME/CFS diagnosis, I was too. And of course if we can uncover another diagnosis that comes with established protocols and treatments, I’d be truly thrilled. If that doesn’t happen, though, I hope you’ll read this information and see the advances they’ve made in research and understanding what ME/CFS is and the treatment options I’ve gathered from specialists around the world.” That’s what I meant to say. That’s what I’d prepared to say, but somewhere in the shuffle, cognitive dysfunction ate my simple little presentation and I was left with “Here. I got this cookie for you.” One of so many reasons I hate this fucking disease.
So, I’m going to email him and try to explain my position, quite possibly with the very same words from above (why reinvent the wheel) and hope that he hasn’t already thrown out all my carefully curated research explaining the cause and effect of so many of our symptoms or the wonderful treatment options that went with them. Of course I still have them all, so I can reinvent that wheel, if I must.
Actually, I sort of do plan to reinvent that wheel for my readers here, so you have that research and can use it however you wish; give it to doctors, use it to educate yourself or a loved one, use it to silence a denier, share it with the community at large. They are all great studies and treatments that come from valid sources. I’m not going to do it in this post and I may not do it all in one, but I probably will write a post about how I chose what I did and why. There are more and more rare diseases cropping up all the time and it’s important for all patients, but especially those who fall into one of the rare or challenged disease categories to be well informed and ready to advocate for yourself (or have someone who is willing to do it for you).
The thing that I really had difficulty grasping (and took me days to admit) was that I had a bit of a splinter in my paw over looking at alternative diagnoses. This surprised me. In the past, I’ve always gone to new doctors seeking other possible diagnoses first, treatment second. I hadn’t realized a shift had taken place somewhere in my mind, a shift that meant that I had come to accept that ME/CFS was mine and somehow, unfathomably, I belong to ME/CFS.
I know, this sounds insane right? Who wants to be married to a crazy fucking disease that’s robbing you of your mind, your motor control, your ability to sometimes leave your bed? I sure don’t, but I guess somewhere between fighting for our dignity and respect and defending the validity of the disease, while making friends who also carry the same diagnosis, I have finally come to feel like I am part of something again and for a moment that something very much felt threatened. I don’t want to lose my pack by being forced into a new kennel. But I know logically that the real friends I’ve made aren’t friends based on diagnosis alone. Heck, my closest gal pals don’t have any overlapping diagnoses with me. It’s all silly, really.
But then I realized it’s not that alone. It’s also about the number of hours I’ve dedicated to the study of the disease, my commitment to the advocacy of its patients, the prospect of the idea that I’ve spent 15 years without a proper diagnosis. Those things are huge. Of course it’s going to be significant, emotionally and otherwise, if I do end up with a different diagnosis, no matter how good or bad that news turns out to be.
Another thing I want to do as a sort of a spin off from this experience is to spend a little time showcasing some of the illnesses this new doctor chose for me. Some of them are phenomenally similar and I can really see why he chose them. These are peeps that should definitely be part of the spoonie spectrum if they aren’t already and sharing in the support of community (and very well may struggle to find people with their own diagnosis). Precisely one of the reasons I didn’t dedicate this blog solely to ME/CFS, FM or even just neuro-immune diseases.
Finally, I will also be writing a post about how to best prepare for a consultation which will include some mistakes I made both preparing and during this visit, but also things I did right. And of course I have several other examples to draw from, so I feel like I’m becoming a bit of an expert on the subject. I’ll include more discussion in that about how I could have possibly prevented the level of fatigue and post-exertional malaise I experienced after the appointment, as well. And maybe someday I will actually get to why I think I have EDS, and make some of the fascinating comparisons I’m finding between it and ME/CFS. So many fascinating things to write about, so few spoons!
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