• My Weakness, His Power

    Happy Friday, friends! My Friday is dedicated to caring for matters of adulting: (i.e. making a million phone calls to schedule an iron infusion, manometry testing, and wedding vendor consults). Who knew phone tag could be remarkably exhausting?! I am physically drained. My insides are screaming with weakness. I have had episodes of muscle weakness as long as I can remember. These episodes were brief and usually limited to my hands. As early as age 3, I recall sitting in the backseat of my mom’s Old Toyota, Kenny Chesney blaring on the radio, and feeling as if my fingers were too weak to form a fist. Weakness is not a foreign concept to me. After all, I have experienced the…

  • Hulu’s “The Act” Is Dangerous For People with a Mast Cell Activation Disorder

    That’s it. I’ll admit it. I watch too much TV. Netflix, Amazon video, Roku—my house has them all. Days spent sick on the couch leaves ample opportunity for such leisure activities, so I quickly jumped on the bandwagon and began watching The Act, an interesting new show with three episodes currently on Hulu. The previews for The Act looked absolutely bizarre. If you are still in the dark, The Act tells the true story of a mother, Dee Dee, inflicting illness upon her daughter, Gypsy Blanchard. Gypsy is depicted as a wheelchair bound, tube fed, CPAP dependent little girl. The show opens with Dee Dee shaving Gypsy’s head in attempts to create some visible facet of illness. As they meet…

  • Self-Care Plays a Key Role in Cancer Treatment and Recovery

    Cancer is not a topic I post much about. Those with chronic illness tend to have a “bad taste in their mouth” regarding cancer because cancer patients receive the majority of understanding from outsiders, as well as the attention from medical studies. I am guilty of that belief myself. However, I have recently been following quite a few stories of young cancer fighters on social media. I now see how the diagnosis can be equally as chronic and just as frustrating as other life-threatening, non-cancer diagnoses. So, when Cancer Well reached out to contribute an article for the blog, I was thrilled! Self-care is an important aspect of managing any condition—cancer or not—and all readers might benefit from these tips. …

  • I Am Disabled and I Agree With Dr. Phil’s ‘100 out of 100’ Statement

    The disability community is in an uproar. It seems are always outraged over the latest injustices against our adversities. Usually it is warranted, like the recent airing of Dr. Phil. I am not going to lie, watching Dr. Phil is a guilty pleasure of mine. Something about his show makes me feel better about my own life. He began the episode featuring an inter-abled couple by first asking  audience members if they would enter into a relationship with someone who is disabled. The results were startling. 58 percent said they would date a wheelchair user and only 29 percent claimed they would date a person requiring full time care. Dr. Phil followed the statistics with a comment directed at an abled…

  • What to Expect After a Subtotal Colectomy and Bowel Resection When You Have a Motility Disorder

    Having a subtotal colectomy with a resection is the worst thing to happen to me. At least, those are my thoughts in the throes of surgery. Although the pinnacle of my distress, the events unfolding from my subtotal colectomy are also some of the best to arise from the situation. I would not be alive and typing this today without that surgery. It saved my life. Originally, I was under the impression I was having a laparoscopic procedure to repair a transverse colon volvulus resulting from my motility disorder. You can read more about the reasons behind my colectomy in I Lost My Colon To Ehlers Danlos Syndrome: Colectomy & Intestinal Volvulus. Considering my subtotal colectomy was performed on an…

  • Educational Success Despite Chronic Illness

    As I enrolled in college courses for this upcoming term, I was informed that I will graduate with my bachelor’s degree in December 2019. Say whaa?! The thought is almost surreal and the fact that the timing is only a measly six-months delayed is practically a miracle. School is no easy feat with chronic illness, but not attending school was never a fathomable option—whether it be high school or college. There have been days I lay in an ICU bed, welcoming the brief spurts of consciousness in which I devoted to completing my homework. However, I have had to drop classes because of health complications in the past. It was not an effortless decision on either occasion. When I first…

  • My Safe Anesthesia Protocol For Mast Cell Activation Disorder

    “Never have surgery EVER again unless you are dying,” said the pediatric intensivist. The conversation took place after my third or fourth surgery, which inevitably ended in another crisis. His words were less than comforting. That is why I laid there, mouth open in horror, as an emergency room doctor informed me I needed surgery immediately. Somehow I did not care that my bowel was minutes from perforation. Although it was definitely an “unless you are dying” situation, all I could think was: anesthesia. Unsuccessful Anesthesia Experiences: Propofol My first surgery was at the age of 7 to remove an infected lymph node on my scalp. I only had minor symptoms of my underlying conditions, like Ehlers Danlos Syndrome and Mast…

  • Warrior Life Planner

    I’ve never been much of a planner kind of gal. As chronic illness took over, all of my plans went out of the window. My life had to change. I learned how to fly by the seat of my pants, so to speak, but my basic organizational skills suffered. The latter no longer has to be an issue with the Warrior Life Planner. When I had the opportunity to try-out the prototype at the start of the year, I became reacquainted with some semblance of control. Let’s just say I am now a believer!! I am always looking for resources that benefit chronic illness patients, and the Warrior Life Planner passed the test by combining all of the best features of a basic planner AND…

  • My Crazy Life: A Humorous Guide to Understanding Mast Cell Disorders (Book Review)

    My oncologist entered the room with two books in his hand during my last appointment. The first I recognized as Dr. Afrin’s book, Never Bet Against Occam, having owned multiple copies of it myself. The second, however, I was unfamiliar with. He gifted me My Crazy Life: A Humorous Guide to Understanding Mast Cell Disorders written by Daniel and Pamela Hodge. Both titles were discussed at an hematology-oncology conference, and he felt the information could be beneficial. His only request was that I give him a review! Mast Cell Activation Syndrome Awareness Firstly, how great is it that mast cell disorders like Mast Cell Activation Syndrome (MCAS) are finally receiving some positive awareness? While Systemic Mastocytosis is generally accepted amongst the medical community, Mast…

  • 9 Questions To Ask When Searching For An Understanding Doctor

    I fumble with the orange prescription bottle in my hand. In my state of perpetual weakness, I exert great force to outsmart the child-proof seal. “Take twice daily for itching,” reads the label on the compounded antihistamine. I had just given a big dissertation on my most distressing symptoms—dangerously high blood pressure, raised and welted hives, throat swelling, persistent colitis with GI bleeding, vomiting and bowel obstructions. Yet, the doctor chose to focus on itching…the most benign of them all. The next doctor walks into the room after viewing my chart. He dons a puzzled look, a “yeah, right,” as I express my perspective. He has seen me for all of two-minutes. Already, he feels the need to send me home under…