• A Transformative Encounter: Intussusception and Ehlers Danlos Syndrome

    Moaning in pain, I cried, “this isn’t fair!” The pulse ox monitor in the cardiac Intensive Care Unit wailed in concurrence. Earlier that day, obstruction symptoms had morphed into signs of shock. Although reluctant, I earned another lights and sirens ride to the hospital. As the paramedics made numerous failed attempts at an IV line to bring my dangerously low blood pressure up, I had to go. Upon arriving at the hospital, I went directly to CT and ultrasound. The surgery team came waltzing into the ER to inform me I needed emergency surgery…round two. The CT showed I had a bowel obstruction, which was expected. I was more than familiar with the pain I was experiencing. However, it was no pseudo obstruction. They explained I had intussusception of my small bowel, meaning part of my small intestine had collapsed into an adjacent section of bowel. The condition often requires surgical intervention in adults. An Incorrect Diagnosis? Thirty minutes passed and I developed a rapidly rising temperature, worsened tachycardia, and low blood pressure. Intense rigors soon joined the party. It was apparent to me that I had an infection, as my lactate and other infection markers were elevated. It was my worst nightmare—the…

  • I Lost My Colon To Ehlers Danlos: Colectomy & Intestinal Volvulus

    On September 21, 2018, I was taken to the emergency room via ambulance. The paramedics were agonizingly slow. The vehicle’s tires made contact with the contour of the asphalt and each divot induced a tormented groan. My family trailed closely behind. We did not realize it then, but I would lose part of myself that day—somewhere between the flashing lights and the hospital treatment bay. Chronic Ileus I have been struggling with a chronic ileus for the last year. Every x-ray shows the same finding: distended small and large bowel with diffuse air-fluid levels. My bowels do not contract as they should, leading to a buildup of air and gastric secretions. Based on my scans and symptoms of obstruction, I was clinically diagnosed with Chronic Intestinal Pseudo-Obstruction. I had an appointment to see a motility specialist for manometry testing to determine whether the problem is derived from muscle or nerve. Of course, I was inpatient and missed the appointment I waited nine months for. Trying to run J tube feedings with my bowel was not going well. I was barely getting by. Whenever I would let up on venting my stomach to relieve the burden on my intestines, I would have…

  • 6 Tips For Newly Diagnosed Ehlers Danlos Hypermobility Patients

    “Ewwwwww,” says the kid in class ogling at the unnatural angle of my arm. The rude remarks and endless childhood injuries all started to make sense once I was diagnosed with Ehlers Danlos Syndrome Hypermobility Type. After enduring months of concerning gastrointestinal and cardiac symptoms in 2010, I was sent to the Mayo Clinic in Rochester, Minnesota. My mom’s phone rang as I was undergoing a workup for a condition called Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS). It was my pediatrician from home. The phone conversation entailed a series of random questions — Is Cheyanne’s ‘double jointed?’ Does she have flat feet? What about a high, narrow palate? Yes, yes, and YES! In the midst of our confusion, the doctor had sworn she had figured it out. She explained that Ehlers Danlos Syndrome is a genetic connective tissue disorder that causes my symptoms and is commonly associated with my already established diagnoses of Gastroparesis, Dysautonomia, and mast cell issues. We were seeking a condition that had a cure, the pediatrician included. EDS did not quite fit that criteria. It was dismissed to search for a condition that did. Two years later, ignoring the obvious did not prove to be fruitful. I…

  • Fibromyalgia, Irritable Bowel Syndrome, and Chronic Fatigue Are Not Real?

    Do you have a chronic illness?  Did it take years to receive a diagnosis? Did it take even longer to receive the correct diagnosis?  If you answered “yes” to the first question, surely the same response applies to the questions proceeding it. Again, if you said “yes” to any of the above, it is likely you saw a medical professional. You probably underwent various inconclusive tests, results tossed aside in an apathetic manner. If you are lucky, the doctor may care enough to nonchalantly pawn symptoms off with a vague term, such as Fibromyalgia (Fibro),  Irritable Bowel Syndrome (IBS), or Chronic Fatigue Syndrome (CFS) without further studies. These terms conceal copious controversy.   What is Fibromyalgia? “Fibromyalgia is a syndrome and common disorder characterized by widespread pain, diffuse tenderness, and a number of other symptoms. Although Fibromyalgia is often considered an arthritis-related condition, it is not arthritis because it does not cause inflammation or damage to the joints, muscles, and other tissues. The causes of Fibromyalgia are unknown.” [ x ] In summary, Fibromyalgia causes widespread, chronic pain. The cause is UNKNOWN.   What is Chronic Fatigue Syndrome? “Chronic Fatigue Syndrome is a condition where you have long term, disabling tiredness (fatigue) and…

  • This Is What Ehlers Danlos Syndrome Is Like

    May is Ehlers Danlos awareness month. In honor of awareness month, I created a video [shown at end of post] depicting a day in the life of someone with Ehlers Danlos Syndrome and its comorbid conditions. The extent of symptoms varies patient by patient. This is how I used to present prior to my secondary Mast Cell Disease becoming severe. I tried to add a humorous twist to the video. Enjoy! You awake in the morning, rubbing the sleep out of your eyes. Last night was spent tossing and turning, so you are not well rested. You wonder why you expected to feel otherwise when you have Ehlers Danlos Syndrome. In attempts to make it out of bed, you roll over, but your actions are interrupted when your hip cries a startling “pop.” It is another dislocation. A searing pain courses through your skeleton, while you contort your body to adjust the joint back into position. Since the joint is back in place, the injury requires bracing. You eye the brace from the corner of the room. You are dreading the arduous journey, as you have not yet managed to make it out of bed. Hobbling, you grab the brace and…

  • What I Wish Kim Kardashian Knew Before Tweeting ‘The Flu Can Be An Amazing Diet’

    The social media world was recently in a complete uproar over Kim Kardashian’s mindless Twitter babble. Apparently, the flu is her latest diet fab because she tweets, “The flu can be an amazing diet. So happy it came in time for the mets lol #6lbsdown” Was this some kind of sick joke?! Probably not. After this incident, I was asked to write a response post for The Mighty. It is the first night out in what seems like a lifetime. Staring in the mirror, bony hands pull at the clothes on my emaciated frame. I silently pray that my friends do not point out the weight loss…again. The carefully planned outfit and extensive makeup are meant to hide my feeding tube and the dark circles under my eyes. These desperate attempts just barely conceal how sick I really feel though. Chronic illness is less than glamorous. I throw on my blue medical mask before heading out the door. It is safety first! After all, the public is currently a cesspool of germs this flu season. Most do not take such caution to avoid getting sick. Some even welcome it, like Kim Kardashian tweeting, “The flu can be an amazing diet.…

  • Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity REVIEW

    Books are my thing. I absolutely love to read. I always have. It is a safe hobby, right? Curling beside an interesting book is the ideal pastime with a chronic illness. Maybe not, if you have a Mast Cell Disease. When a package arrived at the door containing my second copy of the book, Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, I could not wait to delve into its contents again. However, that would have to be delayed. Perhaps it is a little ironic that a book about mast cells caused degranulation of my own cells. They are less than pleased with the exposure of chemicals after the manufacturing of new paper. It had to be left outside to off-gas prior to reading. Luckily, my first signed copy had already endured the process! The thought of potentially reacting to pages in a new book is outrageous to most. With Mast Cell Disease, what is safe one moment can literally be life threatening the next. For example, a patient might tolerate a whiff of perfume in the morning, but by evening something as minuscule as temperature change or opening a…

  • My Experience On Total Parenteral Nutrition (TPN) With Mast Cell Disease

    To preface: While we all have commonalities, every patient is different. I am simply stating my experience. It is always best to weigh the risks versus benefits with your doctor prior to beginning any treatment. Hi, my name is Cheyanne and my mast cells do not know how to behave. If only admitting there is a problem led to a recovery in this case… These misbehaved cells are How I Received A Mast Cell Activation Syndrome Diagnosis to add to the ever-growing list of Ehlers Danlos Syndrome comorbidities. Mast cells are in abundance throughout my gastrointestinal tract. They tend to get finicky. When they do, my body is awesome at inducing anaphylaxis and/or severe Mast Cell Disease reactions upon the ingestion of food, water, tube feedings, and oral/tube medications. This inevitably poses a huge problem from a nutritional standpoint. Whether it is Mast Cell Disease reactions or other complications from Ehlers Danlos Syndrome, like Gastroparesis, I intermittently need Total Parenteral Nutrition (TPN). TPN is a form of intravenous (IV) nutrition bypassing the entire gastrointestinal tract. All necessary nutritional components are fed directly into the bloodstream through a central line. There are many resources to learn the basics of TPN. [x] [x] Total…

  • Love Is What Warms Our Hearts

    A couple of weeks ago I was looking through old photo albums. I happened across an old Valentine’s letter my biological father wrote to my mother prior to his death. Part of it read, “who needs diamonds and flowers when love is what warms our hearts…and what makes us happy when times are hard.” It really got me pondering the concept of death, as well as what we leave behind on earth afterwards. Through our struggles, we acquire a unique meaning of life. We leave behind an impression of that meaning long after we are gone. The words we write are a manner in which this is done. Brief sentences written in cards or lengthy social media posts seem trivial in the moment. However, they  are an accumulation of lessons learned. Even if unperceived at the time, they are our voice, how we want to be remembered. They communicate a lasting significance and have the ability to influence people you never physically encountered. I never knew my dad, but his words still made an impact. I am thankful for my dad and the words he left. As horrible (and nightmarish) as illness is, I am also grateful it has given…

  • The Secret Weapon To No Heparin

    The title of this post might provoke a chuckle (or two), but when on the subject of central lines, Heparin is an inevitable topic.    Heparin is a blood thinner—”an anticoagulant that prevents the formation of blood clots.” [ x ]  It is used universally in patients with central lines to inhibit the catheter from clotting off from blood clots. As per line care directions, home infusions companies provide pre-filled syringes filled with Heparin. Patients are directed to flush with their central line after its use with saline prior to clamping the catheter. This is often termed as “Heparin locking” or a “Hep-lock.” The amount of Heparin the line is locked with is dependent on the length of time the central line is going unused. Following this protocol ensures the patient does not develop blood clots in the line or elsewhere in the body. However, there are unique circumstances that prevent Heparin use. Mine is one of them! As I am a moderator of the Facebook group, IV Therapies For Mast Cell Disease + Related Conditions, I get asked about my experience with Heparin quite frequently.   Heparin Toxicity During the admission I received my first PICC line, I was overdosed on Heparin…