• 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 SHAT OUT MY INTESTINE: C.Diff Treatment With Mast Cell Disease

    Looking into the bedpan, a seasoned nurse of over forty years furrowed her brow. She scoured the room for a tool to carefully place the specimen in a sterile cup reserved for the physician. Judging by her troubled expression, my nurse was obviously trying to disguise her true concern. Neither of us had ever seen such a phenomenon. Intestinal Sloughing The doctor ultimately determined that I had passed part of my intestinal lining. If the gastrointestinal tract sustains extensive trauma, the epithelial cells that form the lining become damaged. Intestinal sloughing refers to the process of the body as it sheds the compromised tissue in attempts to heal. I am well aware that my intestines were in rough shape. After the volvulus, most of my colon was removed. The surgeon managed to save a couple inches of my sigmoid colon (the last part of the large intestine) to resect to my small bowel. My small bowel is unhealthy too. Scans continue to reflect significant dilation. I also had Mastocytic Enterocolitis wreaking havoc on my bowels. Read I Lost My Colon To Ehlers Danlos: Colectomy & Intestinal Volvulus The nurses and I were taken back when an object like a cylindrically folded Clorox wipe the…

  • This Is What Mast Cell Activation Syndrome Is Like

    My stomach drops. Perspiration accumulates on the palms of my hands as the room gets hotter. The impending doom initiates a fight or flight response similar to waiting at the top of a roller coaster, suspended in mid-air and anticipating the thrill of the impending descent. The world feels as if it could literally end. Everything is wrong, but I cannot quite place it. This lacks all the fun of an amusement park ride. This is what Mast Cell Activation Syndrome is like.  Almost simultaneously, diffuse redness appears on my neck, quickly spreading to my cheeks. Both are accompanied by a skin-prickling heat. Although embarrassing enough, the fiery sensation overcoming my body is neither alluring nor the expression of a cutesy, bashful blush. Pruritis, a deep-seated itch, makes its rounds from head to toe. My mouth is scratchy. My flesh is crawling. This is what Mast Cell Activation Syndrome is like.  Blinking becomes strange, almost painful. My eyes grow a puffy tightness and edema takes residence on my forehead. As swelling transforms my features, I wonder how long it will be until I am unrecognizable. Numbness possesses my tongue. I wish I could joke that the cat has it if only to lighten the mood, but I soon…

  • How I Organize My Medical Records

    Rushing through the office doors to the waiting room, there are a billion things to remember. I say “things” loosely, as the English major in me has great contempt for a word so lacking in specificity, but it is the only term that encompasses the magnitude of the many priorities for an impending medical appointment—timeliness, the packing of emergency medications or tube feedings, and gathering patient records…to name a few. At the beginning of my illness, my preparation to accomplish the latter left a lot to be desired. Along with actual medical supplies, leaving a trail of papers in-route all of the way to the crinkling patient bed is not very becoming.  Fortunately, implementing medical record organization is the cure for that disheveled sight. I have established an effective organization process consisting of the following: Binders First, I invested in a sturdy binder. For binders, there are two options. Standard 2+ inch Plastic Binder OR Trapper Keeper Personally, I use the standard plastic binder found on a standard list of school supplies. As records have accumulated, I increased the size of the binder. I did eventually graduate to a binder 3 inches in size. The trapper keepers style is not…

  • I Can’t Relate To You Because of Mast Cell Activation Syndrome

    I am irrevocably familiar with the sharp pangs of physical isolation. Mast Cell Activation Syndrome (MCAS) transforms the basic aspects of living into perilous dangers. Nutrition, exercise, natural hormonal fluctuations, food proteins wafting in the air, chemicals, heat and cold, even the fetid aroma of the old woman wearing strong perfume: all are potentially lethal, or at the very least, life-altering because of the severe symptoms of an allergic reaction they can cause. Resultantly, I am mainly housebound. My last outing was in December. Using my wheelchair, I shopped for 15 minutes in the store Old Navy. I was admitted to the hospital the following week. So, due to my body’s melodramatics at the most minuscule of stimuli, I decline the majority of offers I receive to participate in social events. I say no to family get-togethers, as I go into anaphylactic reactions from exposure to airborne food proteins. I reject party invitations since it is impossible to dictate to each guest what soaps they are allowed to bathe with or the brand of laundry detergent they must wash their clothes in as to not send me into a reaction. I turn down desperate petitions to go out with friends; inevitably, the ever-impending…

  • Top 5 Free Health Apps

    The world today revolves around technology. It is not rare to venture out in public to find numerous gazes focused on a cell phone, tablet, game console, or television. Chronic illness sufferers are no exception. “Sick” does not translate well in the real world. Technology is a way to escape the isolation, manage life, and connect with others enduring similar struggles. With that being said, I chose 5 cell phone applications that make life with failing health a little less complicated. MedManage MedManage has great value for any chronic illness patient taking multiple medications. The sole purpose of the app is to document medications based on name, dose, and time to administer. An alarm option programmed into the app serves as a reminder to take the medications entered. It is a solution for those moments of brain fog when medications doses are skipped or doubled dosed. I cannot even begin to divulge the number of incidents where I swear I took a dose of my prescribed medication, but hours later, at the onset of uncomfortable symptoms, I am unfortunately reminded that I actually did not. Thus, MedManage is a miracle in the form of a cell phone application, literally! Aside from reminders,…

  • Gleevec/Imatinib For Mast Cell Activation Syndrome

    I began my trial of Gleevec, a drug belonging to the class of Tyrosine Kinase Inhibitors (TKIs), November of 2015…but let’s back up. There are a few pertinent details that I must mention first. I had already been inpatient at the hospital for over a month due to a Mast Cell Activation Syndrome flare up. I was stuck in a severe reaction cycle. I was unable to tolerate food and IV nutrition. Thus, my medical team contacted a specialist and then implemented the Continuous Diphenhydramine Infusion (CDI) in attempts to gain control of my symptoms. A continuous infusion of Benadryl was not the most appealing of treatment options, nor were the massive amounts of IV steroids. The goal was to find an alternative that could take over what those medications were doing. With a lack of published studies on the CDI at the time, my medical team wanted to ensure I was not sent home on it. That is why oncology was consulted to trial Gleevec. Little did I know, I would remain inpatient at the hospital another four months. I did document a portion of my trial well over two years ago in Gleevec and CDI Experience Update: Not…

  • Hospital Admissions With Mast Cell Disease Part 3: Hospital Checklist

    Wallet: check. IV medications: check. Change of clothes: check. Tube feeding supplies: double check. I often joke that I bring everything, including the kitchen sink, just to go five minutes down the road to the nearest store. Going to the hospital is no different. In fact, it requires even more planning! A recent pre-planned hospital admission to begin TPN really got me thinking. Mast Cell Disease presents unique circumstances. I previously wrote a series of blog posts about hospital admissions with Mast Cell Disease. The first post addressed the never-ending battle of confronting medical professionals that are not knowledgeable about the condition and its manifestations. Read Hospital Admissions With Mast Cell Disease: Part 1 The hospital can easily become a dangerous environment because Mast Cell Disease causes reactions to commonly used chemical cleaners, fragrances on hospital staff, and airborne and ingested foods. So, the second post elaborates on how to navigate those added triggers in an inpatient hospital setting—like alternatives to overcoming scent-laden doctors and nurses, as well as prepping allergy-friendly meals with the hospital room as a kitchen when their menu offered is not safe. Read Hospital Admissions With Mast Cell Disease: Part 2 With trigger exposure significantly increased, the necessary…

  • Don’t Kick The Bucket: How I Plan With Mast Cell Disease

    Life is busy. Most days, I feel as if I am running around like a chicken with its head cut off. There are college assignments to complete, Etsy orders to fill, doctors to see, house chores to do, and people to prioritize. Sick or healthy, the endless list of to-do’s do not change. There is much to accomplish, yet so little energy to do it. I push and push to get it all done, but it inevitably makes me sicker. The extra pain I can handle. Anaphylaxis induced by mast cell disease, however, is potentially deadly. It is a battle of the wills. And more often than not, my body wins. The harsh reality is that chronic illness dictates which tasks will receive the fulfilling “check mark” and which ones will roll over to the next day, likely never completed. Regardless of the diagnosis, chronic illness requires sacrifice. Mast cell disease presents a different facet though—the histamine or allergy bucket. Understanding that concept did wonders for my functionality in day-to-day living because it provides a basis in which to make said sacrifices. Food, hormones, environment, medications, and stress serve as triggers for mast cell reactions. Each fills the hypothetical histamine/allergy…

  • Safe Christmas Gifts For Mast Cell Disease and Allergic Conditions

    There are snowmen and stockings, ornaments in red and green, and sparkling lights on every tree. The holiday season is upon us. Christmas is a time for giving. The elves spend all year preparing, but still, Santa lacks gift ideas for some of his most special recipients. “I don’t know what to get you when you’re allergic to everything,” practically summarizes the bane of my existence. Chronic illness, especially mast cell diseases, imposes restrictions on the type of gifts received. Whether its complications from scented products, diet changes, or chemicals sensitivities, giving and receiving is frustrating for both parties. Fortunately, with a little consideration and lots of love, there are many options to give your loved ones with an allergic condition. Allergic to bath sets? Try non-scented products. Fragrances are undoubtedly the quickest way to take me down. I am sure it is the same for others diagnosed with Mast Cell Disease or allergic medical conditions. No ‘Warm Vanilla Sugar’ this year! Rather than the typical $5.00 bath sets that most regift, non-scented products are the way to go. There is a range of Free & Clear soaps, shampoos, and conditioners that are a household staple for allergic patients. I…