The Sacrifice, written by my daughter Carmen, was published on Amazon in May 2020. This is her 2nd fictional novel that has been published. In her latest book, the main character becomes sick and eventually diagnosed with gastroparesis. Carmen does a fantastic job describing the ordeal that someone with gastroparesis may go through prior to, during, and after being diagnosed. While Eden, the main character, learns more about what's going on with her medically and how to best deal with it, she is faced with additional (non-medical) life problems as well. Through it all she tries to rely on family and friendship, while also learning more about herself. THE SACRIFICE is a fictional, creative, and emotional read. While much of the book is realistic, including the gastroparesis descriptions, there are also some unexpected twists and an element of supernatural in this book as well. Carmen’s description and details throughout the book are so vivid that it’s easy for the reader to believe they are actually there among the characters, I know I did. About her writing, Carmen states, "I never thought that I would be the one to write books while I was still a kid. But here I am with my second novel. I have always enjoyed writing for the most part, but during the past few months, I am truly starting to realize that I have a passion for writing. When I was just nine years old, my life completely changed. My mom was diagnosed with gastroparesis. I didn’t know what to do, or how I could help her, when she was always feeling horrible and in the hospital. With family by my side, I learned a lot throughout that year, and continue to learn more things each day. At times, I’ve felt like everything was pouring down on me, but didn’t really know how to handle it all. I eventually learned how to open up to my family and lean more on my faith. My goal is to use my writing and experiences, along with creativity, to spread messages of encouragement to others. I was inspired to write THE SACRIFICE because it describes the struggles teenagers can have when living with or trying to survive chronic illness and family challenges. The disease, gastroparesis, that I included in this book is the same disease that my mom has been living with. I may not have the disease, and I may not be able to feel the pain that my mom does, but I see the pain that she goes through every day in my life, and that gives me the ability to relate to it. This book is fictional and has some unexpected twists, but also expresses to the reader that you can make it through whatever troubles you are going through and you should embrace what life gives you. I hope that everyone who reads this book learns something from it as well." Summary of THE SACRIFICE: “Eden is a seventeen-year-old girl that is enjoying her last summer before senior year, but an unexpected curveball gets thrown at her with a life-changing disease. Her twin brother, Bennett, and best friend, Carter, stay by her side, but once a tragedy happens, she begins to feel the pain that she never imagined having. One letter ends up being the mystery that she wishes she never opened up. Will she be able to find closure, or will she give up on everything that she's ever worked for?” You can purchase your ebook or paperback copy of THE SACRIFICE from Amazon now!! https://www.amazon.com/dp/B0892DJV6G/ref=cm_sw_r_tw_dp_U_x_12-0EbYPCRE Carmen’s first book, UNBREAKABLE, is also available on Amazon.
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I have become accustomed to the rough choppy waters of living with chronic pain, fatigue, and more due to the uncertainty of day to day life with chronic illness. Waking up feeling awful, is not an unknown reality. Feeling decent enough to attempt living and not just existing, just to pay the cost later or without notice become overcome with symptoms is not unfamiliar either. Obstacles, pretending, making difficult choices, weighing risks over benefits, all are part of my now normal routine. It’s been over 6 years since I’ve been able to depend on my body’s response to experiencing life. Granted there have been some extremely rough waters to navigate. Unexpected swells that sent me rocking, some that have attempted to flip me under or cause me to capsize.
During these turbulent conditions I was able to hold on, and while difficult and challenging, even if momentarily knocked down, I was finally able to regain my footing and remain upright. Surviving the unsettled and dangerous waters to slowly drift into calmer waters. Dangers still lurking around, but also able to relax a little and enjoy some of the beauty around me as well. From sunsets to sunrises, warm sun on my skin, a few clouds here and there, and the clean fresh scent reminding me that life was/is still worth living. Stormy sea conditions were still present, and not forgotten, yet were not right on top of me, weren’t pounding on top of me, all of the time. I was actually becoming able to navigate semi-safely, within limits of course, to avoid some of the storms. At times choosing a path that led me to wavy, uncomfortable, choppy waters of short unwanted storms that I knew would eventually be put behind me and a part of my past. Skills and strategies were successfully used to control the impact that the unwanted mini-storms would have on me in the “big picture.”. However, at times, the paths before me were not as clear. There are times that I have been caught off-guard and seriously unprepared. Recently, I felt that I was on the right track. Not perfect by far, but more acceptable. Bounced around, fatigued, still symptomatic, but choosing certain situations that were more risky to be able to enjoy some views and experiences of life with my family along the way. Mentally striving and alive. Aware that I had to be cautious and careful, not completely smooth sailing, but definitely more manageable. Thinking that finally, with support, I was figuring some things out. I did not have to sit completely still, anchored down 24/7 to remain “safe”. I did not have to completely trade my quality of life for quantity. I could take short rides to explore my surroundings, relax, and authentically smile with a sense of achievement prior to returning to my dock to rest and refuel for a few days. These days or weeks of recovering, resting, refueling, and preparing for future outings were not only acceptable and understood by me, but encouraging and peaceful for the most part because I could visualize and look forward to future outings being a possibility while also retrieving positive memories while recovering. A reminder that the consequences were at least worthwhile. Sickness and limitations were still part of my life, every single day. But listening to myself, recognizing and avoiding most dangers and not expecting too much of myself, helped build more patience when having to ride out the windier wavy waters, whether expected or not, whether when living life or while anchored down. Just as I was gaining confidence and becoming braver, testing my limits more, and taking more risk - even if just for a day or two - a massive storm formed around me. It was as if I was trapped at sea, white caps crashing all around me, out of reach of a safe familiar place to dock. I was left feeling confused, scared, and lost. At times felt as if I had been capsized with raging waves surrounding me. My sense of safety removed, no correct choices before me. It didn’t matter which way I turned or considered treading, every direction had waves crashing hard enough to destroy me. It was almost as if I had to choose which path of destruction I preferred. Did I want to go against everyone else and fight for a new line just to risk my life for a dangerous life-threatening infection, or simply give in and literally become a shell of myself, just dangling in the waters hoping the current wouldn’t overcome me? Partially waiting for me to completely fade away helplessly, completely missing out on the chance to reasonably experience life in spite of everything else. Dangling in fear that I would lose my grip completely. Part of me actually wanting to let go. A larger part of me reaching and grabbing for anything that may help me remain above the surface while feeling as if I were slipping further and further under the water. Bobbling in fear of being stranded alone and empty, no meaning left, just here until I completely disappeared. Wanting and desiring so much more! Knowing that I can’t let negative thoughts, regardless of how realistic they may seem at the time, or my fears take control as the weight of them will without a doubt pull me under. Also knowing that allowing myself to hold onto everything that I’m missing, blaming myself for where I’m at or even for where I am not at, hating parts of me that I don’t understand and are unable to understand or control, would not be beneficial as they too would do nothing except pull me deeper and deeper underwater. Eroding the part of me that wanted to remain. Regardless of my knowledge, when dangling and treading in the cold violent unstable water, it’s easy to try and escape by holding on to anything that surrounds me, positive or negative. Most of the time, I try to reach for things that will keep me hopeful and above water. I know that I don’t want to drown, don’t want to die, and don’t want to give up. I just want relief. I just want to be me, the me that I can respect, share, and enjoy at times. The me that has meaning and purpose, can be proud of and at ease with. The me that can create positive memories with my children and family. The me that exists beyond my illness and symptoms. Time and time again, I know that there are only a few things that help me survive during these times, which helps keep me afloat when everything else seems to be hastily dragging me under. They are not immediate “cures”, they don’t offer me complete safety at the moment, but they help me through moments, or if fortunate, days at a time. Medically, and mentally, my current medical team, especially Dr K and Dr S help me stay afloat if I let down my guard and allow them. Spiritually, my faith keeps me going. Part of me still believes that everything happens for a reason. I know that God is present, and even though I may never understand what His plan is or why, I'm confident He has a plan and is always by my side. When His plan for me is over, then so will my earthly life. My family, especially my children, are monumental in keeping me afloat. THEY are what I think about when I’m at my lowest, thinking about how much they mean to me, how much I love them, how I don’t want to do anything that will cause them additional worry or pain than I’ve already caused them. Rethinking (and at times rereading or looking through photos) of the wonderful memories that we have shared together as well as the horrible ones that I have been able to overcome with their assistance (even if they have no idea of how critical they have been at pulling me through). But I don’t just think about the past, because sometimes, as positive as it can be, it can also be a reminder of times I miss so much. I try to balance my emotions by also thinking ahead to the future. While also tricky at times because it’s easy to get sidetracked with what I can’t or won’t be able to do anymore, I try to focus my eyes on the present and future possibilities of life with them. A desire to be here for each of them currently, experiencing life with them and through their eyes and accomplishments, as well as wanting to be here to witness their careers and hopefully have an opportunity to one day be a meaningful part of my future grandchildren’s lives as well, if I can make it that far. My children are my life and I am willing to survive any obstacle for them, no matter how difficult or painful it is on me. (Other things such as music can be a helpful distraction momentarily, helping me reground myself, deafen negative thoughts, and refocus on what’s really most important to me.) Honestly, IF it wasn’t for how much I love my kids and how proud I am of the people that they are and are becoming, if it weren’t for them wanting and needing me to be a part of their life (regardless of how I feel), I don’t know that I would even bother trying anything anymore. They accept me and love me for who I am, even if/when I don’t. Storms from chronic illness and life may knock me back and test my strength and will, but God, my family, and a couple of caring doctors are my lifelines if I just trust them and myself enough to reach out and hold on until calmer, more serene tranquil days can arrive. (I just pray hard that I don’t cause additional weight or strain on their lives in the process or meantime.) Gastroparesis is a chronic invisible illness that impacts every aspect of our lives. We may appear "fine" on the outside, but what we deal with every day on the inside is NOT. Gastroparesis doesn't discriminate by age or size. Some will lose a lot of weight, some actually gain. A change in one's food diet may help improve symptoms for some, some are able to get by on liquid and/or pureed diets, and others require tubes and lines to receive their hydration and nutrition. We struggle to find better treatments and improvements in our quality of lives. We advocate for change, because we don't want others to have to endure what we have. We form online friendships that become very dear to us. Our connections help us support one another during most challenging times, celebrate achievements, and unite to make a difference. We are saddened with each green candle as we miss the ones that pass away, fear the loss of additional friends in the near future, and worry about our own path as we experience similar health stories of those we lose. Advocacy helps keep their memories and spirit alive in our hearts. Special thank you to Melissa Adams Vanhouten, Shanna Harjo, Corina Castillo, and all of the Gastoparesis: Fighting for Change Advocates that helped with creating and sharing these and many more collages, memes, and personal stories for awareness this past month as well as other times throughout the year.
It's difficult to communicate to others, including to our families and ourselves, that there is no fix or cure for this awful disease, at least not yet. Depending on your individual cause, improvement may be found when the reason (other illness) is effectively managed. For the rest of us, at the moment anyway, it is all symptom treatment and management. Medicines to treat, or minimize, some symptoms that can in return create horrible side effects. Medicines to treat the side effects that were created by the medicines we were taking in hopes of alleviating symptoms. Surgery interventions that make us face a risk of making our illness worse in the off chance that it may possibly help use improve. I admit, I get frustrated with myself and others at times because I'm doing everything that I'm supposed to do, yet still sick. I know that too many of you can relate.
Everyday, I deal with troublesome symptoms. I used to be an active mother and teacher, a career I absolutely loved, but unfortunately had to eventually resign from due to my health. The evening of February 16, 2013 I went to bed as a "normal" 35 year old and woke up the following morning to an unexpected life of chronic illness. One where food was no longer a pleasure, but instead a nightmare of pain, nausea, and vomiting. I spent months unable to eat anything at all, in and out of ERs and doctor offices dehydrated, in pain, and in need for someone to listen to and actually willing to help me. However, I was unable to find any answers or relief with the exception of IV fluids, usually accompanied with blame for allowing myself to become dehydrated. According to them, I just needed to drink more water, what they didn't understand was I couldn't take in anything without drastic debilitating symptoms. It took numerous different doctors and two hospitals before I FINALLY found someone that understood the reality and severity of my health issues, took my condition seriously, and admitted me for the first of many hospitalizations. Even today, I still fear meeting new doctors as a result of some of the negative, degrading, and hopeless experiences I have been through. Thankfully, through determination and God's grace, I currently have an awesome medical team of doctors that authentically care about me, my quality of life, and that I can actually feel comfortable with trusting. At this time, the majority of my nutrition literally enters my small intestines through my GJ feeding tube I've had since 2013 and then exits my small intestines through the ileostomy that I've had since 2016, when I had my colon removed due to colonic inertia. Due to chronic dehydration, I have had a few PICC lines and PORTS. Both are types of central lines that are threaded through a vein to the entrance of the heart, but differ in the location they are placed and how they are accessed. I, personally, have a PICC right now to infuse Lactated Ringers at home throughout the week and for a couple of iron infusions when I am anemic. (Other people may use central lines for things such as saline hydration, TPN, antibiotics, and/or chemo.) Having central lines can most definitely be beneficial but also come at a great risk for central line blood infections and sepsis. I have been hospitalized numerous times for infections that required removal of my line, broad course antibiotics while inpatient at hospital for at least a week, sometimes longer, and then having a new line placed. I have had friends, likely you have as well, that died as a result of central line bloodstream infections. It is a scary risk, but necessary for some in order to have any kind of quality of life. Daily I deal with pain, nausea, and fatigue. The majority of all of my health problems can be labeled as chronic GI motility disorders, (recently being rebranded as Disorders of Gut-Brain Interaction by Dr Drossman and the Rome Foundation). The Research Enhancement Act is a bi-partisan bill that we are currently trying to have co-sponsored and passed in the House of Representatives. It is also known as H.R. 3396. If passed, it can help increase research and awareness for GI motility disorders including but not limited to gastroparesis, colonic inertia, GERD, achalasia, and pseudo-obstruction. Even if our problems are not cured in the immediate future, better awareness, more effective treatment options, and improved understandings of the causes and impact of these illnesses on our lives and our family's lives can. Our successful #DCgreen2019 Gastroparesis March on Washington patient rally, our Facebook live Virtual March on Washington event, and our attendance and participation in legislature meetings with IFFGD (International Foundation for GI Motility Disorders) at their Hill Day event show that together we can, and will, make our voices heard to make a difference. In closing, I want to encourage each of you to never give up. Keep advocating for yourself and/or your loved ones. Find a doctor that is right for you. If you're not getting answers or aren't satisfied with the care that you are receiving, keep searching. You know your body best. When plagued with chronic illness we learn very quickly how important it is to actually create a medical team, one that knows and understands us and wants to work WITH us on devising the most effective plan for our personal best quality of life. Communication, empathy, and compassionate care are all beneficial along with medical knowledge. Learn from your experiences, allow them to make you stronger. Remember you are NEVER alone. You will have difficult days, we all do. You may have days that you feel like giving up, I know I have. And that's okay! If you need to take it one day, one hour, or heck even one minute at a time - do so. B-R-E-A-T-H-E. Reach out for a supportive hand or a sympathetic ear when needed. Nothing is wrong with that. There's a whole community of people that care for you and are here for you, whether it's family and friends nearby, ones you connect with online, or both. I promise you are not alone. On more tolerable days, if possible, offer helping hands or ears to others. It doesn't matter if it's in person, by mail, over the internet, or by phone. Small actions can make a positive difference in someone else's day or even life, just like they can for you. Find a way to have your voice heard. Whether it's by social media, writing, talking, attending conferences or events, contacting your legislators, or something else - you have a purpose and you have a message that can make a difference. You may even discover that sharing your experiences helps you feel better mentally and emotionally. To me it helps bring the feeling of purpose and meaning to my life. I know that I posts more online, whether blogs or other social media platforms, about my illness than many would like read or hear about. I try to post positive comments & pictures, usually family related, as well. The negative ones are not because I want pity or attention, it’s simply because though I am not my illness, my illness is a huge part of my life. How can it not be?? It’s because social media & blogging are an outlet for me, especially since I don’t get out much anymore. Being a private person, I usually don’t share anything at all on my worst days, I don’t go into detail about all of my continuous symptoms or struggles, but at times I do need to get things off of my mind.
Advocating, which I know some are tired of as well, is a POSITIVE act. Since having to resign from teaching due to my health, which is still difficult & painful for me to think about, I struggle with purpose and meaning to my life outside of parenting. Advocating gives me a sense of helping & making a difference, even if it’s small scale. Smiles and laughs caught on camera are positive glimpses, sometimes internal happiness, but not the entire picture. For example: I spent 2 days with friends across the US in DC last week - both inside. Only 1 of those days (day with legislators) required me to be on my feet for extended amounts of time as we walked between offices. Lots of pictures with smiles, because it WAS a special and monumental time. But, physically it was more demanding than I would let myself believe. Nights were sleepless due to pain & over-exhaustion. I’ve been home for 1 week and still have not returned to my “baseline”. Up until Monday, my kids were trying to convince me to go to ER or at least see one of my Drs because they were worried about me. I was worried as well, but didn’t have energy or strength to go anywhere & knew that there was nothing that could be done to help. I already have IV fluids regularly at home along with tube feeds & medications. My body just needed lots of patience and rest, still does. The way my body reacts to what used to be a “simple” day is not caught on camera, is not usually shared, yet is my reality & is extremely frustrating. Keeping my reality bottled up all the time is destructive to mental health. I try to portray positivity, but at times break down and share the negativity of gastroparesis & chronic illness, because if I didn’t I would not remain in a safe state of mind. You don’t have to understand, only those that live with chronic illnesses truly can, but please be respectful & mindful of the need to express negativity at times. I used to try and teach myself to “force positivity” all the time, but found myself sinking deeper in despair. Being “fake” or “wearing a masks” , which I still catch myself doing to prevent others from seeing my pain & how bad I feel, is often much more draining & isolating in the long run and can lead to a more dangerous path for oneself. Therefore, I apologize if my posts get on your nerves, are negative or sometimes even depressing, but I do not apologize for being real, being human, and looking after me. On June 24, 2019 gastroparesis patients from across the country came together as a united front to spread awareness and make our need of more research and better medical treatments known. This was not an easy trip by any means for me, but I felt that it was a meaningful and worthwhile trip for not only myself personally, but for so many in the gastroparesis and GI motility disorder communities. I am extremely fortunate to have had support and encouragement from my family, online friends, and even my therapist to remind me that it may be a risky and difficult journey physically, due to my health, but also had the possibility to be a unique, purposeful, and special opportunity to me mentally and emotionally. So with fears in the back of my mind, curiosity and the desire to meet others in my online support group, the focus of possibly making a difference, and the determination to follow through on my responsibilities as a patient advocate and friend, I traveled to Washington, DC with my father and teenage kids. Not only did we go to DC to attend the #DCgreen2019 patient-created Gastroparesis Rally on June 24, but also for me to attend IFFGD's (International Foundation for GI Disorders) "Hill Day" event which included a short conference and a day of appointments with US Senate and House of Representative offices. I spent the morning of June 24th with a few friends that have similar health issues as me, as well as with other digestive motility disorder advocates. Some of these other advocates were parents, medical professionals and IFFGD staff members and volunteers. The speakers during this morning conference were very interesting and informative as they shared with us the reason for advocating, important medical related information about doctor-patient communication, and how patients can be more proactive in raising awareness and pushing for legislative bills that can improve patient healthcare and treatments. Some of the speakers that we listened to were Ceciel Rooker (IFFGD president), Dr Baha Moshiree (GI motility specialist), Hayley McCorckle (IFFGD's public relations), Dr Frank Hamilton (chief of Digestive Disease programs branch in Division of Digestive Diseases and Nutrition at NIDDK), Peter Herzog (Washington representative for IFFGD), Dale Dirks (Washington representative for IFFGD, and Susan Chittooran (Patient Engagement Project Manager of FDA). At lunch, those of us in the Gastroparesis Support Group who were attending the rally, left to go to our rally location. Originally planned to take place on the Capitol Grounds at Union Square, the rally was moved to an indoor venue, Ivy City Smokehouse, due to the threat of severe thunderstorms. The energy level increased as everyone began arriving at the venue. Hugs of joy, physically meeting friends met online, and making new friends that actually understand and share the desire to inspire positive change for our community led to a comfortable, exciting, and personal atmosphere. Often feeling out of place, like a "freak" due to health issues or awkward because of health accessories needed such as feeding tubes, ileostomies, central lines, etc - many found this environment allowing each of us to feel "normal" as we were not alone and could truly understand and empathize with each other. As great as uniting and visiting with each other was, the afternoon would consists of even more encouragement and motivation. Melissa Adams Vanhouten, an amazing friend and advocate welcomed everyone to the rally and shared a moving, inspiring, and focused speech, which is linked below. Dr Michael Cline of the Cleveland Clinic spoke next, sharing important and beneficial facts about gastroparesis, treatment options at the present time, diagnostic tests that he finds most helpful and that should be done by all patients to check the motility of the entire digestive tract as well as autoimmune testing was suggested. He was kind enough to stay and answer questions from our patient community. His informative speech is also linked below. We also heard from a fellow gastroparesis advocate, Debbie, as she read letters of support and encouragement that the Rome Foundation and Dr Pascricha from Johns Hopkins sent to our patient community for this occasion. A dedicated, loving, and grieving father, James shared his daughter Nicole's personal story. He shared beautiful memories of her, the heartbreak of her illness, her love for life and her desire to make a difference and help others even during her own struggles, as well as his determination to keep her dream and memory alive by advocating for the gastroparesis community. A beautiful memorial service was then led by a fellow gastroparesis patient, Kristine. The rally ended with numerous brave patients sharing their stories. They included a child, a young adult with active sepsis, support group members that overcame obstacles to make it to DC, and a daughter expressing concern for her mother while also explaining that they are fighting so hard to advocate not only for her but even more so for the young children that are having to live and deal with this debilitating illness. Two of the speeches can be heard here by clicking on the speakers name: Melissa Adams Vanhouten Dr Michael Cline Many gastroparesis members attended the #IFFGDHillDay event the following day, June 25th, alongside IFFGD (International Foundation for GI Disorders) staff members and other GI motility disorder advocates. We were divided into small groups based on our state prior to our arrival at our scheduled appointments with US Senators and House Representatives (or their staff). My North Carolina group had a busy and meaningful day meeting and talking with the offices of Senator Burr, Senator Tillis, Representative Butterfield, Representative Price, and Representative Walker. We were supposed to also meet with Representative Foxx, but due to unforeseen circumstances in the schedule, we just left a packet of information with her staff. During each of the meetings, we discussed the house bill 3396, also known as the Functional Gastrointestinal Motility Disorder Research Enhancement Act of 2019, that we hope will be supported and passed, as well as why it is important to our health community. We personally shared a portion of how GI Motility disorders has impacted our lives. (Unexpectedly, tears escaped when I was sharing my personal story with them, especially when I spoke of how it affected my kids and my career.) Other discussion points, besides HR 3396, were our pleas for them to increase NIH (National Institute of Health) funding, increased Department of Defense Gulf War Illness funding, and a FGIMD program for the CDC (Center of Disease Control). By far, regardless of how purposeful, meaningful, and powerful these two days were, it did not come easily. It took a lot of energy that many of us struggle for daily. As people living with chronic illness, attending these two important events required us to put our health at risks. Many of us chose to power through debilitating symptoms and add additional physical stress to our already worn bodies, all with the hope that our sacrifices would be worthwhile and make a difference, if not for us, for the gastroparesis and GI motility disorder community as a whole. In conclusion, we left feeling a sense of pride, encouraged by new connections and deeper friendships, and inspired to continue forward with our advocacy efforts. Feeling a sense of accomplishment, we are now in the process of determining what our next courses of action will be. #DCgreen2019 #IFFGDHillDay I know that I have not written quite as often over the past few months, or to be honest, last year as a whole. It's not that I didn't want to, in fact I really felt the need to share and process the mental anguish that I have been dealing with as a result of my physical illness, medicine side effects, trust issues, and complete exhaustion. I just have not been able to find the right words to accurately express my thoughts and experiences.
During 2018, I tried to persevere through my low moods, discouraging seemingly unbearable days, fears, and sadness for the sake of my children and family. I tried hard to focus my attention on the "more tolerable" days and the creation of positive memories on those days, to help me survive the unfavorable and undesirable days. I attempted to be present with my kids and family as much as I could, accept and respect my body's limitations, and pursue the highest quality of life that I could, regardless of the side effects I would face later. (And yes, they have been and continue to be brutal and last for days.) But what is the point of being alive if I don't allow myself the opportunity to live and experience moments with my family? During 2018, I lost touch with an important part of me. I spent months feeling numb and lost, but during the foggy moments I still tried to remain true to my goals and intentions. Yes, it was incredibly hard and at times I wanted to quit, wanted to give up, wanted to disappear - but the love from God and my family, as well as some a few close confidants, didn't allow me to drown. They remained by my side and gave me the encouragement to hang on just one more day, to strive for the beautiful moments in life, and to relive the meaningful and special memories in my mind when days seemed too dark or painful to continue. The final month of 2018 ended up being a realistic summary for my entire year. Health issues. Mental worries. Emotional lows. Physical and emotional exhaustion. The feeling of living in a daze. Injuries, from falls, that I was determined to handle on my own. Ignoring medical needs momentarily as I tried to "figure it out" or "allow it to fix itself" on my own. Challenging and taking risks outside my comfort zone, in search of treasured memories with loved ones. And days of consequences that made me rethink and appreciate the meaning behind each of my chosen actions. I ended 2018 with my kids, husband, and dad at a football game. My youngest kids are high school students, avid sports fans, and have attended numerous ball games with their father and grandfather. However, I decided to attend this game with them. It was the very first time that I have ever been with them to a football game. Was it easy? Definitely not! I was beyond exhausted. I was nauseated. My body ached all over. My heating pad was necessary at the hotel. I humbled myself and agreed to riding in a wheelchair from the parking lot to our seats. With the exception of the game we remained and rested at the hotel. (Which admittedly was more than worthwhile, because it helped me reserve that much needed energy to sit at the game and bring in 2019 with them by my side!) Due to my feeding tube splitting and leaking, I had to go a few days without running my tube feeds - which added additional strain to my body. My IV fluids were infused in the hotel room and during the car ride. My body definitely hated me, my mind questioned and partially criticized me, while my mind, spirit, and heart were full of love and pride! My life is not ideal, that is for sure, but miracles still surround me, and for that I am most grateful. 2018 has had its ups and downs, achievements & letdowns, laugh & tears. Every year will. Emotionally & physically I have been challenged, but through it all God & family have remained steady. My goal for 2018, will continue throughout 2019; Striving through difficult days with the memories created during the more tolerable ones. One thing I’ve learned through my experiences, through saying goodbye to friends & loved ones that have rejoined Christ in Heaven, is that life is too short and treasured memories are too important to waste. (Even if I have to deal with terrible physical consequences afterwards.) Our online GP support group said goodbye to 50 young souls in just 2018 alone, 50, and that does not include any of our friends that passed on prior to 2018. I'm sure that there are probably others that we are not aware of. A friend I was close to in high school and another school classmate ended their lives at the age of 39 and 40 a few months ago. Family members and family friends have passed away this year, some of which were unexpectedly, due to illness and/or accidents. No one is promised tomorrow. Happy New Year everyone! I'm sure that we all will have hard and difficult days during 2019, but may we also be blessed with so many more enjoyable ones to share with our loved ones and friends. I recently discovered a new artist, Stine Bramsen. When listening to her music, two of her songs, which I have included below, really caught my attention. I know in reality that the her lyrics and messages are suppose to be different from my interpretations. I am aware that she is singing about relationships and the challenges that can occur. However, the way I personally relate to these songs, are not in regards to a romantic relationship with another person. Instead, they make me think about the relationship I have with my own body and chronic illness. You see, to me, her song "Not Giving Up" is an encouraging voice to my own personal health challenges. It represents the way I feel. It reminds me of how a conversation between my inner spirit and illness may go. No matter how hard I try, I can't get away from my body. My body, sometimes physically from chronic illness symptoms, sometimes mentally from being exhausted of coping and dealing with chronic illness on a daily basic, creates pain that I want to escape, but can't. My body, physically and at times mentally, can be, and often is, my body's worst enemy. My body is ALWAYS trying to fool me. It tells me that it's hungry, needs nutrition, needs hydration, but when I attempt to provide it with what it needs, my body betrays me. Instead of just using the nutrition to help me, it creates crippling abdominal pain, bloating, nausea, and at times heaving or vomiting. My mind also fools me, persuading myself that this bite or swallow will have a different, more tolerable result, until I actually follow through. Then BAM! Consequences arise. Not to mention how little I can actually handle physically, before relentless exhaustion overcomes me. How the hell do you trust a body that is constantly deceiving you? But, I have to stay. I can't trade my body in for a new one. The scars of my chronic illness are all over me, internally and externally. Scars from numerous surgeries and procedures. Scars from painful and negative medical experiences, hurtful judgmental comments, medical appointments gone bad, medication related side effects. Scars from missed opportunities with my kids whom I love immensely, and the loss of identity from leaving a career that meant so much to me. Scars that remind me of the path my body and health have led me down, scars that have an impact on how I view myself. I can't deny - there are times, low challenging and terrifying times, when I want to be completely be done with my body. Times that I have contemplated how I can end the pain because it just won't stop! Nobody cuts or harms me the way that my health has. Illness just won't give up on destroying how I feel. At the same time, part of me is resilient and won't give up either. My soul is not giving up, it fights to put illness in it's place. I strive for better physical health, while also respecting my need to feel ALIVE, to feel like I am living and not just existing. My heart and voice are pushing me, not letting me give up on myself. Because of my family (especially my kids) and God, I keep living. I'm trying to let go of the grip pain has on me, let go of the bad memories, let go of the guilt that illness has made me feel, let go of the power that disappointments from being sick has made me feel, let go of the negative impacts being ill has had on my life and the way I view myself. I'm attempting to learn how to let go of the things that I can not change or control, while not giving up on ME. I am appreciative of others that have not given up on me, and that have in return helped me to not give up on myself either, even if my illness itself will not give up and disappear. I thank my loved ones and the caring doctors that have been an essential part of my journey. Unfortunately, not everyone has been encouraging, understanding, or supportive. There are people, some that know nothing about me, and some that were responsible for helping me, that bring me down with their irresponsible judgements. Admittedly, I too, have passed harsh judgement on myself. Most of the time I can forget and forgive those that pass judgement because I know that they don't know what life behind my front door looks like; but the hurt of being judged still appears and is still unnecessary. Even more so, the heartache of people in the chronic illness community, being denied help or dismissed from medical doctors or nurses that lack compassion or willingness to truly listen is inexcusable; Which brings me to the other song I found today by Stine Bramsen, "Don't Judge Me." Cruelty and judgments, even when deceivingly done behind my back, hit hard. Not only does it devalue or minimize the impact of my illness, but it also sends me down a misguided path of shock and despair. Just because one does not have the capability of feeling my pain, feeling my nausea, living the negative consequences of my illness, or witnessing the decisions and choices that I make (disregarding the costs that I will have to accept later in exchange), does not give them the right to judge. Trust me, I would have no reason to pretend or exaggerate. There are no gains that would make it worthwhile. Why would I choose a life of torture? I can't undo the painful truth of how horrible my body feels, I can't undo the honest truth about how much pain food causes, I can't undo how much fatigue I experience, I can't undo the amount of nausea and lack of sleep that I endure. I can't undo the reality of my health. I can't undo the harm that some judgments have on my spirit. As Stine's beautiful and powerful lyrics say, "I can't undo the painful truth, I can't undo, God knows I wish I could. Don't judge me, cause I can't have, I can't have your blame on me, cause you were not there, you were not there; so don't judge me, I can't take it anymore." Sometimes, I "need to hide my pain away" to try to reclaim and live life. It doesn't mean that I am not hurting. Sometimes, when smiles and laughs are seen by you, inside I feel like I'm crumbling apart or that my insides are about to explode at any moment from pain, or feel like I will soon begin heaving by the aromas around me or intense nausea, but I choose to hide it in order to help those I love enjoy moments with me. I sometimes hide my miserable symptoms to strive for something meaningful and cherished in my life. I choose to hide my symptoms, to protect others from worrying about me, or in attempt to protect my own mentality and spirit, if only for a few moments. So unless you live with this illness, you will never know how life-changing and terrible this illness can be on one's life. "You'll never know how I hurt inside. You'll never know how I've cried and cried and cried." Unless you live with the daily pain and consequences of chronic illness, don't judge me or others. "I don't deserve you hate on me." Neither do they. Trust me, those closest to me, know that "I am hard enough on me" already. I already downplay and minimize the symptoms I experience more than I should. I judge myself harshly by what I can't accomplish but desire so much to do. I judge myself for what I miss out of in life (especially when it comes to my kids), for what I have had to give up (like my career). I judge myself critically for why I am not better yet. I judge myself unkindly for judging myself on things that are outside of my realm, outside of my control. So please don't judge me, I can't take your judgement or blame anymore. |
Trisha BundyA proud mother, educator, Gastroparesis & GI Motility Disorder Advocate, Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
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