It’s Thanksgiving Day 2019, and I am sitting in bed feeling less than grateful. I should be very thankful that I am not in the same place as last year when my jaw was wired shut through the gums and I was awaiting surgery part 2 in December, but instead I am feeling lonely and sorry for myself
Anne Wojcicki, founder of genetics company 23 and Me, joins Shark Tank this week as a guest shark.
All of the people in my life from a year ago have dumped me and moved on. No one takes my illness seriously and they think that I am just a drug seeking fair weather friend, but I know that the truth is that I’ve been minimizing the severity of my condition for too long
I don’t have a pop and click in my jaw like everyone else seems to think that they have. And as I sit here alone in bed watching shark tank, the story of the entrepreneur who developed 23 and me tells her story. When the human genome project came into play and we had more information at our fingertips about how to prevent disease based on genetic factors, the healthcare industry got nervous. There isn’t money in prevention.
So the idea that individuals could become their own advocates, and start to do scientific research based on the results of their genetic testing was a threat.
The National Institute of Dental and Craniomaxillofacial Research has issued a report about the causes, standard tests, and effective treatment TMJ disorders. The findings are unknown, inconclusive and lack evidence based research. Disorders of the TMJ were informally assigned to the dental profession years ago because the medical profession’s insufficient understanding of occlusion and how the teeth and bite affect the joint
But the truth is that the joint is the most complex in the body and the studies are finding a genetic component to the disease…provided evidence supporting previously-reported associations between TMD and two genes: HTR2A and COMT. Other genes were revealed as potential new genetic risk factors for TMD, including NR3C1, CAMK4, CHRM2, IFRD1, and GRK5. While these findings need to be replicated in independent cohorts, the genes potentially represent important markers of risk for TMD and they identify potential targets for therapeutic intervention.
Whenever someone hears about my jaw, the first question they ask is —-‘How do youeat? I guess it’s become second nature for me, I don’t even think about it…when I go to any restaurant, I automatically ask about the soup of the day.
The most common question that people ask when you are sick or recovery from surgery is, ‘What can I bring you to eat?’ Jaw surgery patients get the same question, but the food choices are few and far between. Throughout my life as a TMJ surgery patient, I have spent years with my jaws wired shut and living on soft chew and non-chew diets. It’s probably the hardest part of life with TMJD.
I don’t think that most people can picture what it looks like to have your jaw wired shut, so I’m attaching a picture. There are three screws drilled through the gum and bone. Wires are wrapped around them multiple times so that there isn’t any slack to pull on the screws. I had one tooth pulled on the right side of my face, and I can fit a syringe through the hole to feed myself liquid. I was wired shut like this for 4 months (September 2018-January 2019). Prior to that I was wired using surgical hooks on the brackets of my braces.
Diet and nutrition is an important part of the treatment plan for so many medical conditions like Irritable Bowel, Crohn’s Disease, Diabetes, Allergies, Hypertension, Cancer, and a number of Autoimmune diseases. Every time I turn around there’s a new Gluten-free, Vegan, Low-sugar, Nut-free and Dairy-free food options popping up. Restaurant from 5star to fast food are catering to dietary restrictions. Customers can order a gluten free/vegan option without making any special requests!
But a TMJ patient will be hard pressed to find a snack that won’t dislocate their jaw at an arena, on an airplane or in a movie theater. There are concessions for every kind of dietary restriction imaginable, EXCEPT for the soft-chew/non-chew diet.
It seems unimportant, until you are the one who is hungry. It’s interesting to watch how this problem impacts the patient who hasn’t been dealing with this issue for a lifetime. Kanye West wrote a song ‘Through The Wire’ about his experience with a wired jaw. The record catapulted him to stardom!
I was at a bat mitzvah for my friends daughter while my jaw was wired shut. When I got to the reception and they placed a steak in from of me, I politely took out my cell phone and typed a note explaining my situation and requesting hot water in a tea-cup. I pulled a bouillon cube out of my purse and made myself some consommé. Soup to the rescue once again!
No one has adequately addressed the diet of patients who can’t masticate. During the last 8 hospital stays, post-surgical meals were inedible- not because they didn’t have enough salt- because I literally couldn’t get them into my mouth. The nutritionist would stop by and talk to me about the importance of a balanced diet, but putting on a tray isn’t helping me: my tray included eggs, jello, pudding and meatloaf. I was eating though a syringe and the only thing I could get down was clear liquid, so once I got home I spent the next 4 months blending my favorite soup until it was smooth enough to drink.
Meal delivery services are all the rage. Although these companies aren’t designed with TMJ patients in mind, I found a few delivery services that cater to our needs. I hope you will find this list helpful. Because when you are home and feeling less than energetic, the last thing on your mind is cooking. I haven’t tried them yet, but stay tuned for reviews.
Another important thing to remember is that after surgery your sense of taste changes for a while. So don’t stock up on anything until you see whether you like it after you wake up from anesthesia. A week after surgery, I found my favorite kinds of soup from Zabar’s and Hale and Hearty, and I kept a weekly supply on hand.
The links below are for soup delivery services. Some of them are plant based, others are comfort food, and some offer a variety of diets and options.
This comfort soup has no preservatives or additives-giving it the delicious taste of home. Full of flavor that is unmatched by any commercially processed soups, these soup baskets will show your loved ones how deeply you care for them.
A little homemade goodness can go further than you can imagine. With a thoughtful gourmet chicken noodle soup basket, you can give cheer to someone who needs it, even from a distance. Spoonful of Comfort is here to help you, so you can send the perfect gift that says everything you wish you were there to say.
At Osso Good, we make bone broths and paleo soups. Nutrient-Dense foods made with organic ingredients that are also gluten free, Whole30 Approved and Certified Paleo. We are very proud to make our own bone broth in small, controlled batches to ensure the quality is always consistent and the taste is always amazing.
There is a reason why your Grandma always cooked up a pot of chicken soup when you were feeling ill. Bone Broth has been used and prescribed for centuries by physicians and grandmothers alike in all traditional cultures to help heal you from the inside out. By slowly simmering the bones, meat, tendons/ligaments, and feet of an animal, you are able to transfer their nourishing benefits into an easily digestible liquid. The remaining broth contains gelatin, essential amino acids, and minerals that are giving bone broth the new title of, “superfood”.
Supports the immune system
Promotes healthy digestion by healing and sealing the gut
TheSoup for the Soul Bundleshave been handpicked to include our best soups. We offer a regular size version of soups, and a mini version. Both bundles can include breads if you prefer. *Note: Some items in this bundle require cooking in the oven. Those are marked with an (RC).
Soup and Bread, the perfect meal!
Vegetable Beef Barley Soup
Broccoli, Mushroom & Zucchini Soup
Chicken and Rice Vegetable Soup
California Beef Stew
Many Bean Soup
Tomato Basil Bisque
Soup for the Soul Bundle with BreadsSoup for the Soul Bundle Soups, PLUS an assortment of breads
Whole Grain Rolls
Carrot Zucchini Muffins
Corn Bread Blueberry Toaster Cakes
Fresh Herb Focaccia
Pesto Cheese Flatbread (RC)
Verdura Gourmet Artisan Flatbread with Kalamata Olives (RC)
Warm your soul on chilly winter days with this collection of hearty and delicious soups. The Soup Sampler includes: Tomato Grilled Cheese Soup, French Onion Soup, and Loaded Baked Potato Soup. Simply pop the entire soup into a dish and bake up for a warm, flavorful treat. As easy as they are delicious. You get two of each flavor, six 10 oz. individual soup portions total.
I’m 16 years old and my mother and father drive me 4 hours to meet a surgeon with both a medical and dental degrees from Vanderbilt and Harvard. When he walks into the exam room, I am hyper focused on his waxed handlebar mustache combination. My parents hang on his every word, as he speaks with unwavering authority about my ‘condition.’
My diagnosis: degenerative arthritis of the TMJ with bilateral displaced discs and regressive modeling of the mandibular condyles. He explains the need for surgery with disc repair, bone biopsy, osteotomy, and alloplastic Silastic implants.
They didn’t question his method or technique because he was the doctor. In fact my parents never questioned anyone while I was growing up, not the mechanic, the air conditioning repair man, the pool guy, no one…they ran on blind faith.
My whole problem started in 1990 when I was 16 and my mother let this surgeon put Silastic implants in my face. They had already been recalled by the FDA, it he told her that they are safe for off label use as long as they aren’t used to replace the disc in the joint.
So he put them in and removed them 3 times from 1990-1993. The biopsy shows that I had pink healthy tissue during the first surgery and by the time of the second operation the findings were ‘foreign body giant cell reaction and the tissue specimen was grey and brown’
Dow Corning settled a class action lawsuit, but my family wasn’t part of it because my parents were convinced that this surgeon was God and they let him cut me open 14 times, before he decided that I was beyond his expertise, and he abandoned me.
Medical students take the Hippocratic Oath to ’first, do no harm.’ when they become Doctors
In cases of TMJ dysfunction, the diagnosis isn’t clear and there isn’t a standard course of treatment or definitive set of diagnostic tools. The best option is to run tests to ‘rule out’ possible diagnoses. The medical community uses the power of deduction to make an educated guess. By it’s very nature, practicing medicine by working backwards is certain to cause some harm.
Personal examples of the harm done while trying to ascertain a proper diagnosis often requires painful and invasive tests, trial medication regimens with dangerous side effects, and exploratory procedures that are nothing more than surgical fishing expedition to look for anything remarkable or an anomaly that doesn’t match the Grey’s Anatomy textbook page.
Since it’s virtually impossible to accurately compare the risk and benefit ratio of one course of action against another, patients have to weigh the pros and cons of their own healthcare using variables like finances, yelp reviews and rhetoric from other patients on social media.
Patients take calculated risks when deciding on a treatment plan, because we can’t tell ahead of time whether greater harm will result. In desperate times— the risk (no matter how great) will never outweigh the possibility of living another day in pain.
I have tremendous respect for the medical community, but after decades of incorrect diagnoses and ineffective treatments, it would be irresponsible of me to blindly move forward with a treatment plan just because a doctor has good ethical intentions.
Baby Boomers took the doctor opinion as gospel and never dared question how he came to his assessment. They were bound by some unwritten rules of proper etiquette.
BUT…we can’t allow this oath to stand in the way of patient rights. A patient has the right to question the treatments, methods, research and patient reported outcomes before blindly trusting a doctor. A patient has the right to advocate for themselves.
We need high-quality research to help us better understand the balance of risk and benefit for the tests and treatments we recommend. Ultimately, it is also a reminder that doctors should neither overestimate their capacity to heal, nor underestimate their capacity to cause harm
Why An Upgraded Hippocratic Oath Is Needed In The Digital Era
The Hippocratic Oath is the most famous text in Western medicine and constitutes the ethical basis of the medical profession. For centuries, it has provided an overview of the principles of this noble mission and doctors’ professional behavior. At the dawn of a new era in medicine, it is high time to rewrite the Oath so that it would reflect the state of technological development, changes in social structures and in general, the requirements of the 21st century.
The Hippocratic Oath in historical perspective
The medical profession adopted the Oath of Hippocrates as its ethical code of conduct centuries ago, but it’s still being used today by many medical schools at graduation ceremonies. That’s not mere chance. The text articulates perfectly what the noble profession of being a doctor entails and in a compact overview takes a side in every major ethical issue a physician might encounter during their career.
Rachel Hajar in her study on the historical perspectives of medical oaths says that in 1500, a German medical school (University of Wittenberg) introduced taking the oath for its graduating medical students. However, it was not until the 1700s, when the document was translated into English that Western medical schools began regularly incorporating it in convocations. In 1948, it was adopted by the World Medical Association (WMA) based in Geneva – that’s the so-called Declaration of Geneva. Numerous medical schools use this version of the Oath ever since. Later, the text was rewritten by Louis Lasagna (the then Dean of the Tufts University School of Medicine in Boston, Massachusetts, USA) and this version was adopted by many medical schools in the USA.
Does the Oath have any significance today?
It seems it still does. Although not every medical student is required to take the Hippocratic Oath or any kind of oath for that matter, and no one is legally bound by the text, the majority of physicians believe the Oath still has relevance today – although it cannot reflect on many contemporary issues and possesses ambiguous, troubling passages.
In 2016, Medscape created a poll to measure opinions about the relevance of Hippocrates’ famous pledge. Total responses to the survey numbered 2674 physicians plus 134 medical students. Reactions were deeply polarized, and age was a decisive factor. Those under age 34, 39% said it was significant, compared with 70% of those 65 and older.
Still, statistics show that the majority of medical schools incorporate some kind of oath, in numerous cases the Hippocratic Oath into a ceremonial event. Thus it is essential for schools to give ethical guidance to medical students. But the Hippocratic Oath is in many cases exchanged with something else as it cannot offer young people the pieces of advice they need in the modern world.
Here, we suggest some changes to the original Hippocratic Oath to better reflect the 21st century.
The principles of the Hippocratic Oath -renewed
1) Patient inclusion
A passage of the Oath reads as follows, “I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow”.
However, where are the medical researchers, the nurses or the patients? The scientific community does not only consist of physicians. Thus it would be great to include more players in the field, also symbolically. By now, doctors are not the sole repositories of medical knowledge, and the ivory tower of medicine is crumbling under the weight of the digital sphere, social media, empowered patients or the DIY movement. The Hippocratic Oath should reflect that.
2) Healthcare must shift from treatment to prevention
Another section says that “I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism”.
However, with the recent advances in precision medicine as well as the appearance of preventive health, physicians should not only tend to those who already have symptoms and need treatment but advise the healthy how to stay fit and well. The appearance of health sensors, wearables, and health apps result in a massive chunk of data, which will help analyze as well as predict trends in the health of individuals and populations. This should be included in the Oath, too so medical professionals could act for the benefit of the healthy and the sick.
3) Acknowledgment for technologies
The Hippocratic Oath should not get by without the inclusion of technologies anymore. It has to acknowledge the transformative impact that medical technologies have on healthcare – traditional as well as digital solutions. However, like artificial intelligence, robotics, AR/VR, health apps, wearables, sensors, portable diagnostic devices transform healthcare, that will be even more essential.
So, what if the oath said, “I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife, the programmer’s algorithm or the chemist’s drug?” What if we include “available technologies” into the following passage, so it will read this way: “I will help prevent disease whenever I can with my knowledge and available technologies, for prevention is preferable to cure”.
Physicians need to acknowledge the raison d’etre of technologies in healing, and one of the means to assume its rightful place in medicine starts with its inclusion into the Hippocratic Oath.
4) Recognition of life-long learning
Not only is it necessary to mention technologies in the Hippocratic Oath, but it’s also critical to be able to use the latest innovations. That also requires openness towards new concepts, ideas or medical devices, which seems to be evident for many physicians, but is not practiced in the medical community as often as it should be. Maybe a kind reminder in the oath could give at least a symbolic boost to life-long learning.
Thus, The Medical Futurist would add the following passage to the oath: “I will embrace life-long learning to continually improve my knowledge and skills to be able to use any technologies with scientific evidence for the benefit of my patients”.
5) The inclusion of equal-level partnership
Access to information and technologies is not a privilege of physicians sitting in the ivory tower anymore. Patients also have access to information about drugs, cures, methods online, and with a pinch of digital literacy, anyone can find curated and credible medical data online. It started to shift the hierarchical patient-doctor relationship into a collaborative partnership in the future. The oath has to address the changing social relations within the structure of the medical system, and The Medical Futurist suggests the inclusion of the following:
“I will treat my patients in an equal-level partnership, and I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery”.
6) Addressing privacy concerns
Respecting patients’ privacy is a primary passage in the Oath. However, there is no indication of data privacy anywhere. Sure, there was no need for it 2,000 years ago as Odysseus did not check in to Facebook day after day when heading home to Ithaka, but that’s not the case today.
According to a Stanford Medicine White Paper, 153 exabytes (one exabyte = one billion gigabytes) of healthcare data were produced in 2013, and an estimated 2,314 exabytes will be generated in 2020, translating to an overall rate of increase at least 48 percent annually. The need for safeguarding that amount of information is paramount, so we need to include it in the Oath. How about the following solution?
“I will respect the privacy of my patients and their data, for their problems are not disclosed to me that the world may know”.
The Medical Futurist strongly believes that it is high time to adjust the Hippocratic Oath to the winds of change, so younger physicians could better relate to its overall principles, and older physicians could take more inspiration to work from it.
Today was the day that I realized that I was born too soon, or that I was born into a family that didn’t believe in one persons ability to make change.
All of my ideas and opinions for decades have come to life, and I watched from the sidelines because I allowed my friends and family to plant a seed of doubt in my mind, all it takes is one seed to grow into a forest. They were unable to see the forest for the trees.
The forest, my vision for big things that could change the world and solve problems, was dismissed by people too busy questioning the value, originality, demand, and utility of my ideas. They were too focused on the details to look at the big picture. I never appreciated the difference between micro and macro economics, until I started to get people excited about an unproven product or idea that lived outside of the traditional box. The BIG IDEA
My entrepreneurial spirit reared it’s head in elementary school when I started making custom ribbon barrettes and selling them to classmates. I specifically remember an order from Anika Moss for a pair of Red/Pink ribbon barrettes. My mother tried to convince me to make them in Red/white and tell Anika that Red/Pink ‘don’t go together.’ I didn’t listen to my mother because I knew what my customer wanted. The point of my little business was to offer something that wasn’t available in the store. I was in 4th grade, and I earned $200 making handmade barrettes.
In 10th grade I started down the never ending road of Temporomandibular Joint Surgery. I was still modest and uncomfortable with my changing body at the time. Walking around a hospital in a gown that exposed me to strangers was mortifying. But I couldn’t put on a regular pair of pajamas or a nightshirt because I had drains sewn into my face; IV drips running in my arms, and compression devices on my legs. So, I asked my mother to bring me my favorite pair of pajamas, which were a tank top and short set. I cut the tops of the tank and the sides of the shorts open and attached self adhesive Velcro strips for closure. I was able to step into the top and secure the tank at my shoulders without disturbing my drains or IV and the shorts slid between my legs and Velcro-Ed closed on the sides without messing with my legs or catheter.
Since then, I have seen Kickstarter campaigns created by patients who struggle with the same issues when they are living with PICC lines. My idea for licensing characters for kids hospital clothing and designer brands for gifts to people who have extended hospital stays is still a profitable venture. I even had a concept for gowns that had funny quotes- I guess today they are ‘memes’- , my special talent for finding custom solutions to make people comfortable in their surroundings is beginning to take shape. As the years go on, and one surgery turns into 25, I become an expert in what a patient needs to bring to the hospital in order to survive surgery- especially surgery on their head and jaw. A Bell, Adult size bibs, a husband pillow to sit up in bed, moist heating pad, dry erase boards, baby spoons, non-skid socks, I built a toolbox for patients.
When I graduated from college. Fancy Schmancy gift baskets, Seinfeld, Purim, Car WashThat me to creative ideas began as early as age 16
Hope’s Toolbox- Rehab toolkit
HautetototKids online create your own outfit store
Reeleez- Movie theater for kids parties
It’s Klippy- Klip ons for kids
Baby blue airlines- Jet Blue for families
RockCandy Kids- a record label for family music
Take a Bite out of Pain- TMJ Association awareness campaign- take a selfie biting into your meal- anything. Take the biggest bite you can. Challenge 3 people to take a bite bigger than yours or they have to donate 5-25 to TMJ Association.
ASL access and inclusion- create a universal language to break down global barriers. Start by providing access to ASL interpretation of live streaming events, podcasts, audiobooks, stand-up comedy specials. New revenue stream for digital streaming platforms. Side by side with closed caption or in addition. The monetization comes from the number of new customers who weren’t purchasing because they didn’t have access to enjoy the content. Open a management company to represent these highly trained and qualified interpreters to secure sponsorship and endorsement deals.
All of the things that I fought for in my life are finally becoming possible. I was diagnosed with an AVM in 2001 before social media support groups. No one knew anything about this rare congenital condition. Now, we have crowd sourcing shows to share information and help find answers to unsolvable medical mysteries
My TMJ problem has always been a source of embarrassment for me because neither the dental or medical community recognize it as a specialty, but after years of advocacy and showing up to government meetings even when my father said things like ‘what are you gonna schlepp there for, you can’t change anything’ or when I spoke to my cousin who is state senator about ways to lobby the government about this issue and she replied ‘it takes more money than you have’ or when I called my sorority sister who works for the CDC and she told me that ‘Congress needs to designate funds for research before they will add it to their list of recognized diseases.’ Or my former father-in-law who was the president of the American Dental Association whose entire campaign was spent making sure that the state of Alaska had access to dental insurance, while I explained that more than 10 million people are being maimed by uneducated doctors who hold themselves out as specialists and rob desperate patients of their last nickel.
None of these people listened, and none of them are listening now….But with the advances in the genome project and the findings that show a correlation between TMJ dysfunction and connective tissue and autoimmune disorders, we are finally making strides to push this disease into a category that the medical community will take seriously because the first sign of chronic disease may be evident from this joint, which has been overlooked and dismissed as a dental problem.
For my entire life, skin rashes and jaw pain were handled by dermatologists, allergists, orthodontists and oral Maxillofacial surgeons…but a rheumatologist may have been able to halt the damage to my joints and saved me from the pain of diagnostic tests and from the financial burden of a medical problem that was being handled by the wrong profession. Rheumatologists deal with joint damage from Psoriatic Arthritis and Ankylosing Spondylitis. These joint replacement surgeries are covered by medical insurance, but the same PSA that attacks hips and knees can also destroy a TMJ. The TMJ is excluded from coverage because it falls in a dental category. So the same disease that can require surgery of my elbow, wrist, knee, ankle, hip, and shoulder will attack my jaw, but I am responsible to pay out of pocket. The system needs to fix this.
Especially when my jaw is even more prone to failure as a result of the foreign body giant cell reaction from the Silastic implants that the FDA pulled off the market for TMJ trismus use in 1993, the very year that I received my third set. Why should I suffer absolute poverty because of a glitch in the system. How long will I have to fight. What celebrity will need to suffer before I am taken seriously. Which artist or athlete is valuable enough to elicit change.
The origin of the expression “Suck It Up” comes from WWII pilots. If a pilot happened to vomit into their Oxygen mask, they had to “suck it up” otherwise, they would breathe the acidic fumes into their lungs and die. The expression actually means to choose the lesser of two evils.
I recently realized that I use a lot of idioms in my everyday speech. These cliche phrases create a visual representation of something that is too complex to describe. An idiom is a neat bundle that the listener can unpack using their own subjective interpretation.
The phrase ‘bite the bullet’ has underlying meaning to people, but most of us don’t know where it came from.
The meaning: To make yourself do something difficult or unpleasant that you have been avoiding doing.
The origin: During the American Civil War there were no painkillers for wounded soldiers in need of surgery. Army doctors gave patients a bullet to bite on to distract them from the pain. Patients could either choose to die or ‘bite the bullet’ and face the extremely painful operation.
A year ago, I had to bite the bullet figuratively and today I have to bite the bullet literally.
In January 2019, I finally made a decision to have an operation that I was avoiding for as long as I can remember. The surgery was a total joint replacement of my Temporomandibular Joints. I only avoided the surgery because of the horror stories I heard from other patients and because of my past experience with a failed implant.
Unless you are a surgical TMJ patient, there is no way to understand the lack of oversight and accountability by doctors, dentists, insurance, companies, medical device manufacturers and government agencies with respect to this complex joint. But, any single patient who has been operated on will agree that this area of the body fell through the cracks when Grey’s Anatomy was written.
So after dozens of surgeries on my jaw joints, I was given no other option. A metal joint was my only chance, and I BIT THE BULLET. In my case, biting the bullet meant coming to terms with the fact that my life would be littered with revision surgery and replacement parts. I wasn’t a certified ore-owned BMW- I was the cat that you see up on blocks at the mechanic. You know the one. All of the door panels are different colors. Only two wheels have hubcabs, and the steering wheel is covered in pleather because the plastic underneath is cracked.
Emma Watson coined a new phrase consciously in-partnered. And I appreciate her independence and stance on the ridiculous notion that women need to pair up at a certain age in order to achieve validation by society. I grew up in a world where that goal of getting a ring was a right of passage, and I want my credit! But I also want to own my single-ness, sort of. I hate to use the words ‘it’s complicated’ because it’s really pretty simple. I am divorced with Joint Custody of my 12 year old daughter. We split up 11 years ago; which means that our parenting schedule is pretty much a routine.
So when I coined the term Single-ish, it was to clear up the confusion on a doctor’s intake form because at the time, I was living with my boyfriend. BTW, this is never a choice on the form! We are both divorced with children, and we live together. Every other weekend we have our kids. So, some weekends we are honeymooners and other times we are the Brady Bunch.
Since then he has moved out, but the term still works because I am single every other weekend and Thursday nights when my daughter stays with her dad, but I’m never alone because I always have my dog, which means that I always have responsibilities and obligations to care for another loved one.
There is nothing more frustrating to a patient than having to censor themselves during a consultation. It’s counterproductive to finding a solution, but becoming more necessary for self advocacy. Let me unpack the last two sentences….
I was at the rheumatologist two days ago because I have cobalt chromium molybdenum implants leeching toxic ions into my bloodstream, and as a well informed patient, I know that my depression and altered mental state are a direct result of that process. I know this because I watch the immunology conferences at the FDA, involve myself in support groups with other patients, read clinical studies and published reports, and I have become a central hub for all of my doctors. I link together valuable information about my medication, radiology reports, operative reports, and integrate dental, medical and psychiatric professionals together so that I have continuity of care and so that no one kills me because they weren’t aware of what another doctor was doing.
So when I see a new doctor because my treating physician is unavailable but wants me to come in for bloodwork, and the new doctor decides that my tears and hopelessness are signs that she should inquire about whether I am a danger to myself- I get frustrated. Not because I think she is insensitive to my physical pain, but because I know that my emotional stay is a manifestation of my physical condition.
So, kicking the can down the road to the psych ward without digging into the root cause of my depression is negligent and borderline reckless behavior. I am close to calling it malpractice, but I think it’s closer to naivety and inexperience than intention.
New doctors have become so programmed to believe that everyone just wants to commit suicide they forget to consider that depression and suicidal ideations are a symptom of neurological problems created by metal toxicity and a host of autoimmune problems and drug induced side effects. So please try to look a little harder before you label a patient mentally ill. Sometimes the emotional rollercoaster you are witnessing is actually a symptom of a physical illness.
If doctors expect honesty from patients, then patients must be able to trust that their transparency will be used to make informed medical decisions and not hasty deductions based on fear of liability.
Every once in awhile I emerge from the fog of battling serious, ongoing illness and realize that the way I view the world is not the same as that of others around me. I am often afraid of everything! Folks are dressing up for special Christmas celebrations and with it comes perfumes, colognes, hair spray,…
— Read on justjuliewrites.com/2019/12/21/when-you-are-afraid-of-everything/
When I first moved to New York, I lived with my nana. And she would go to different places for her hair. One place for color, another for cut, a special place for scalp treatments, and another to have it set in rollers to sit under the dryer. This same woman cut coupons for canned soup and wore costume jewelry with her mink. She wore nothing but Escada and Oscar de la Renta, but she would take the bus to the Lower East Side for alterations to save money.
I grew up with a mother who’s mantra for life was take my money, save my strength’ She would pay $5 to valet park the car at the Dollar Tree….the point of these examples is that— I never questioned a lot of things things in my life that didn’t make sense, because I assumed that there must be valid reasons for the way things are done. And it wasn’t my place to question or challenge authority.
As I got older and started to realize that maybe my nana and mother didn’t have such solid arguments for their habits, I began to question a lot of other things that didn’t make sense. Like a lot of problems that seemed to have simple solutions. The funny thing is that every time I came up with an answer to a challenge in my life, these two particular women would tell me that there must be a reason that it hasn’t been done already.
Then my health started to get the best of me and I had to stop working. I am on Medicare in my 40s because of my disability. There is a misconception that people on disability are riding high off the hog. There is some notion that we are receiving a fat monthly check and free medical insurance coverage while we hang around watching TV. The reality is that
Part A & B only covers 80% of my medical expenses accepted by a participating provider.
Part F is my supplemental plan that covers the 20% gap. The premium is $350 per month.
Parr D is my prescription drug plan that is another $40 per month.
Here’s where my childhood experience comes into play….My psychiatrist and Pain Management Doctor don’t accept Medicare. So I pay them out of pocket because my mother’s mantra rings true, and the strength and trouble of starting over with new doctors who don’t know my background and history is a daunting task
My particular condition which includes Psoriatic Arthritis has destroyed my Temporomandibular Joints. But because the TMJ is not categorized as a specialty by the Dental or Medical profession, Medicare excludes it from coverage. So, if my psoriatic arthritis destroys my hip, knee or wrist-surgery is covered. Unfortunately, my 25 surgeries have all been excluded, as well as the surgical orthodontics required to complete my treatment.
My TMJ disorder was diagnosed by a dentist when I was 15, and he operated by repairing and removing my discs and inserting Silastic and Proplast implants. Those implants caused a giant cell reaction that triggered my psoriatic arthritis which continued to deteriorate my joints and cause an inflammatory process that ankylosed (fused) the mandible to my skull.
Over the last 30 years, oral Maxillofacial surgeons have performed more than 25 operations to restore my jaw function. In 2014 my hands and feet were covered in weeping sores and I could hardly walk. I had bandages covering every fingertip, and I asked the surgeon to please test the rash because I was afraid of contracting MRSA during my hospital stay. He told me that he would biopsy it during surgery.
When I went for my post op appointment and asked for the results, he told me that he’s not a dermatologist and I should have someone else look at it. I went to the dermatologist who had been giving me cream and calling it dermatitis, and I insisted that she biopsy my foot. The test came back positive for psoriasis. She said that it didn’t present like typical plaque psoriasis and that’s why she missed it.
Once I had the psoriasis diagnosis, I called a rheumatologist who specializes in Psoriatic Arthritis and made an appointment. The nurse who schedules the calendar said ‘the doctor only sees patients with psoriatic arthritis, are you sure that you have that?’ I said yes and went to see the doctor. When I got to the appointment he asked me to touch my toes, and I told him that I haven’t been able to do that in about 20 years. He ordered bloodwork and an MRI and asked me who diagnosed me with PSA. I told him that I diagnosed myself after 30 years of failed surgery on joints that are compromised by an autoimmune disease.
The results came back and my bloodwork showed markers for the antigens HLA A2, HLA A3, HLA B7, HLA B35, HLA CW4, HLA CW7 and my MRI showed sacroiliac spondylitis. I began taking Humira and methotrexate, but the rheumatologist knew nothing about the TMJ. Nothing. I brought him published medical journal articles about how PSA can affect the TMJ before presenting in any other joint.
The significance of all of this lies in the fact that having independent verticals of medical specialists and keeping dental, vision and mental health separate from medical is dangerous and violates the Hippocratic oath. My psoriatic arthritis affects my vision, teeth/jaw, and mental heath. The dry eye and inability to close my left eye all the way means that my prescription keeps changing, but I don’t have vision benefits for glasses or check-ups. I don’t have dental insurance, and my bad bite causes tooth loss and gum infection which totals thousands of dollars in out of pocket expenses each year. My jaw surgeries always require surgical braces, the braces are used to wire my jaw shut and to adjust the teeth so that the bite functions after the new joints are placed.
Orthodontics are not covered by insurance and the $10,000 fee per surgery has cost in excess of $90,000 out of pocket without any reimbursement. Splints, nightguards, retainers, therabites, travel hotels nurses
To make matters worse, I have been unsuccessful at changing the landscape of the Oral Maxillofacial Surgery community even with the resources that were at my fingertips. My father in law was the president of the ADAssociation, and he had no interest in broaching the subject. Even today, as he works diligently to try and take down Smile Direct because they are undermining the dental profession’s ability to make money, I try to explain that more importantly is the damage that their product is causing to the jaw joints of unsuspecting consumers.
So to make a long story a little less long… the answer to this problem is to integrate everything. Not just dental and medical. I am not talking about having primary care doctors give fluoride treatments. I mean having a dentist in the same office with a primary care physician, so that when you go for your annual check-up you can get a cleaning and an exam. And the doctor will communicate with the primary care about the overall health of your mouth.
Then you move over to the optometrist who examines your eyes and updates the chart with the health of your eyes and updates to any changes.
Finally you check in with a psychiatrist to evaluate your mental health and adjust and medication you are taking and give referrals for therapists that specialize in areas where you are struggling or need support. If you need a letter for an emotional support animal or accommodations for work or school. This is the place.
While I’m here can I speak with the pain management doctor about my chronic illness. Because if you want me to try Yoga or acupuncture, then I need you to find a place that takes insurance or you need to start offering it here.