• Worthy of Celebration

    On Christmas Eve night, I was likely parked on the bench seat at my grandmother’s kitchen table. A wide variety of treats were always displayed on a platter near her fondue fountain. Candy, chopped fruit, and pound cake—I reveled in the chocolatey goodness. Mid-dip, my family would joke I was their “little alcoholic” because my favorite holiday delicacy had the slightest hint of kahlúa. However, that minuscule amount is the only alcohol I ever consumed. A lot has changed since my childhood Christmas traditions. To a certain degree, I do not feel I am the same person. Family deaths, moving two states away, feeding tube placements, countless central lines, an (unfortunate) chocolate allergy, and a handful of traumatizing experiences separate the woman I am today from that young girl gorging herself with holiday fondue. Although I recognized Christmas as a celebratory cause filled with wonder at the birth of the savior back then, I never considered the ways I chose to celebrate and the holiday traditions as blessings. The family get-togethers and extra church services were a given, almost like the presents under the tree. It was my right to go about the motions and I felt entitled. That is, until I could no…

  • Enough Is Never Quite Enough

    Think back to the last occasion you were hungry. I do not mean the the lapse of hours between breakfast and lunch. I am referring to true hunger—when you have gone all day without stuffing a morsel of food into your mouth or a week of scantily picking at your plate because the nausea from a viral illness temporarily prevents proper nutrition. You were probably cantankerous and stressed in your weak state, knowing a spoonful is your only escape to abate your growling stomach. I was all too familiar with true starvation. That is, until my feeding tube. Due to my severe case of Mast Cell Activation Syndrome, I am tube fed. I have one safe formula. ONE. Months ago, the manufacturer of my “safe” formula decided to change four of its ingredients. Abbott, the company, claimed no alterations had been made to the ingredients of Elecare Jr., and that the names on the label differ to ensure it is easier to read for consumers. After my petition, Abbott even posted that disclaimer on their website’s FAQs. Read STARVING TO DEATH: Abbot Nutrition Petition  If their reasonings were true, countless patients with various medical conditions would not have required emergency care from using…

  • “Variant of Uncertain Significance”

    I have run the gamut as far as medical testing goes. When I became ill, I desperately sought justification for my symptoms. The majority of diagnostics were definitely solid evidence that my body is one hot mess, but rarely did they provide my medical team with a sensible, overall conclusion. They only lent information that did not quite fit and make sense. Thus, leading to additional questions rather than answers. To locate an underlying condition that is causing and/or exacerbating my severe case of Mast Cell Activation Syndrome, I had genetic testing. The kind of testing I had is referred to as Whole Exome Sequencing (WES). It examines all of the protein-coding genes in a genome, which comprises only 1% of the genome. The genome consists of the entirety of our DNA. As explained in a previous post titled, Where Then Is My Hope, my doctors suspected Mitochondrial Disease to be the culprit of my many maladies. But Mito or not, we were keenly warned that approximately 30% of patients discover their disease-causing genetic mutation(s). Much to our bewilderment, my genetic sequencing revealed neither the former or the latter. Three mutations were found, but two are significant. One is a mutation in FLNC and is…

  • Empty Sky

    The weather is beautiful. Gazing upwards, there is not a cloud in the sky. It still seems so empty though, aside from the stray birds soaring in an arrow formation. A melancholy mood rolls in with the breeze. Despite the surrounding beauty, the sun’s rays cast light on everything that is wrong. It illuminates life’s questions, like why and how come. Unlike the creatures of the sky, I cannot take flight from the misfortunes I have no desire to face. In the recent weeks, there have been multiple losses in the chronic illness community. The first was really close to home. The next was more personally devastating, as it was a friend with a common diagnosis. Both have been an eye-opener for everybody involved. The situations could easily be any of us. Life is short. These events not only denote its fragility, but they also cause questions to surface. Why did my friends die? Why were they sick? Why am I sick? Why do people have half of the problems that they do? How come life is not fair? What have we done to deserve this? I then came across John chapter 9. Jesus eventually healed the eyesight of a…

  • Suffering: I Want To Live

    To label the events that have occurred over the last few weeks as disheartening would be an understatement. It has been blow after painful blow. Sudden illness, cancer, suicides…The consecutive tragedies are enough to make anyone question the purpose. How does one not get caught up in the suffering in the world? While countless people are currently sick and suffering, there is good in the world. Life does contain moments that make it worth living. Hearing the lyrics to a favorite song, the birth of a new family member, and laughter from a joke shared between close friends are just a few. These moments transform into lengthier periods of contentment when life goes smoothly and according to expectation. We yearn for it to last. Struggles and the suffering that results can be isolating. However, we are not alone. We each have them. We are not alone in questioning why either. As Christians, we are not expected to worship a God who is unfamiliar with earthly burdens. He is all-knowing, and Jesus, His son, faced the ultimate struggle and suffering on the cross. Suffering is inevitable. It is an unavoidable part of life that is a direct result of sin entering…

  • 5 Verses For A Well Versed Patient

    Chronic illness patients, especially those with rarer conditions, MUST be well versed in their health. How often is it that we seem to know more about our condition(s) than doctors?! The healthy, who are trained to place the utmost faith in medical professionals, might be surprised to discover that it is approximately 98% of the time….in my experience anyways. I have very little trust and faith in doctors. They rarely have clear answers to the inquiries regarding the insanity that is my body. Being informed has spared me a tremendous number of medical mistakes that could have very well led to my demise. I do, however, have faith in God. He has all of the answers. Whether they are revealed to us in this lifetime or not, our faith does not have to suffer like our bodies. God is omniscient, all-knowing. For to us God revealed them through the Spirit; for the Spirit searches all things, even the depths of God. For who among men knows the thoughts of a man except the spirit of the man which is in him? Even so the thoughts of God no one knows except the Spirit of God. – 1 Corinthians 2:10-11 It…

  • Biblical Pain Relief

    Maintaining a hopeful, healthy spirit is of utmost importance. When the body is in pain, doing so is challenging. There are a few Bible verses that make it easier. Think of them as codeine for the soul, HA!   You are not alone.  Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world. And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. – 1 Peter 5:9-10 Misery loves company. There is an endless supply of support if you look in the proper places. Everyone suffers, both Christians and non-Christians. Thankfully, Christ will restore us. Suffering is temporary. That’s why we are not discouraged. No, even if outwardly we are wearing out, inwardly we are being renewed each and every day. This light, temporary nature of our suffering is producing for us an everlasting weight of glory, far beyond any comparison, because we do not look for things that can be seen but for things that cannot be seen. For things that can be seen are temporary……

  • New Beginnings

    Families tend to be predictable in their holiday celebrations. Rigid with their traditions, each Christmas is a repeat of the year before. Gatherings are always at the same house, games from the previous year are duplicated, and similar gifts are given. Plus, someone is inevitably sent into a tailspin if a distant cousin contributes pecan pie instead of their usual chocolate cake. The recent passing of my grandmother, moving out of state earlier in the year, and being too ill to travel make former holiday rituals impossible. I would be lying if I claimed that the circumstances do not set a dismal tone to an otherwise joyful occasion. It got me thinking. So much emphasis is placed on maintaining Christmas traditions and becoming saddened when they change. Only a few days later, this thought process makes a complete revolution when ‘change’ is happily welcomed with the commencement of the new year. Ironic, isn’t it?!? “For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.” – Isaiah 9:6 The purpose of Christmas is to celebrate the…

  • Thanks For Nothing, God

    This months Bible study is focusing on thankfulness with Thanksgiving approaching. And, *shock horror* I am just not feelin’ it today. I feel very unwell. Hibernating in a dark room offers little contentment, indicating my mood. The incandescent sun streaming through the slight part in the curtains is not sufficient at transcending the opaque disposition caused by life’s circumstances. “Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.” – 1 Thessalonians 5:16-18 Yes, even Christians encounter moments where thankfulness is considerably lacking. Life can be a mess. What on earth is there to be thankful for? Millions of inquires occasionally prompt the statement: “Thanks for nothing, God.” All believers have periods of feeling like our current circumstances are the mocking paybacks of God, scoffing from above while we heedlessly ignore the instruction to express gratitude. Perhaps our trials are indicative of something better. Maybe there is meaning to the days that do not proceed in a glamorous manner imagined, like when we fall ill, spill coffee on our favorite blouse, fail a test, and when stresses from work are all consuming. “We are hard pressed on every side, but not…

  • What’s There To Fear?

    During the month of October, people find pleasure in feeling afraid. Reveling in the orange and black Halloween decor, they diligently plan gory costumes. The fictitious ghosts and goblins conjured rouse amusing horror. Other fears, though, are not as positively received. The laundry list of potential fears is long, expanding into the dark abyss that conceals the “monsters” we all struggle to repress. The fears can assume any fathomable form and are so many that we are unaware of them all. It is the unknown. The unknown inevitably evokes fear. Sickness is another bullet on the ceaseless checklist of fears. And the combination of the two is frightening. Disease, along with its formidable progression, is terrifying. Experiencing symptoms is not new. Whether I realized them as abnormal or not, I have had them to some extent since birth. But overall my health has only deteriorated, with few “remission-ish” spells in between. My current health is not in a good. In fact, the words “not good” fail at sufficiently communicating the situation. I am talking unable to take in even 10 mL of water orally/via G tube, constant pain I never thought possible, and now 99.5% wheelchair bound kind of “not…