Real Life Diaries: Living with Gastroparesis by Lynda Cheldelin Fell and Melissa Adams Vanhouten, includes personal heartfelt and thoughtful responses to inquisitive questions that other gastroparesis patients, as well as patients with chronic GI illnesses, family members, friends, or even medical professionals may have regarding life with Gastroparesisis and/or other chronic digestive disorders.
The narratives provide readers with an inside view of the impact that chronic illness can have on one's physical, mental, and emotional health as well as their day to day lifestyle and the connections with those around them. Each of the stories are different, unique, and individualized while also sharing insight that others can appreciate and relate to. This book is not intended to diagnose or treat conditions, but rather an opportunity to learn more about some of the various symptoms, treatments, and knowledge that we've learned from our health experiences. The intention of the book is to make others more aware of their condition(s), recognition that they are NOT alone, and share ideas about treatments or procedures that one may choose to discuss with their personal medical team. If you are expecting to read a cure all, happy feel good, happy ending book - this is not the book for you. Instead, this is a realistic look into what patients feel, see, think, hear, fear, and even hope while learning how to live and cope with being chronically ill. Not only will you discover the impact that being sick may have on the patients' personal lives, but in some cases, how it impacts their social and family circle as well. In addition to this book, I have also found the following books to be enlightening, educational, thought-provoking, encouraging, and/or helpful along my health journey. I will add to this list as I read and discover new books that I find to be beneficial. (Clicking on the title will take you to the book's amazon page.) Gastroparesis Healing Diet by Tammy Chang Info regarding healthy eating and recipe advice from nutritionlist and patients. Changes that Heal (Book & Workbook) by Dr. Henry Cloud Book and workbook for deeper understanding in developing and healing yourself emotionally. A Blessing In Disguise by Kristen Fox and Mel Kenaston Blessings in Hidden Places by Kristen Fox and Mel Kenaston Both autobiographical books are from Kristen's personal perspective and experiences. Sadly, she has passed away since publishing her books. Kristen was also an online advocate, writing numerous articles for various sites, one of which was MTV. After the Diagnosis: from Crisis by JoAnn LeMaistre Written by a clinical psychologists, the reader is introduced to the six stages of emotional response to chronic illness that they, as a patient, may experience. The reader is walked through the stages of crisis, isolation, anger, reconstruction, intermittent depression, and finally renewal. Gastroparesis: A Roadmap for Your Journey by Chelsey M McIntyre As a pharmacist and person living with gastroparesis, Chelsey McIntyre shares what she has learned and experienced along her health journey. "Topics covered include foundational material on evaluating information, understanding what is happening to the body, and navigating medications, nutritional supplementation, and alternative therapies." Gastroparesis: My Personal Journey by Patricia L Rosati Autobiographical book about Patricia Rosati's personal experiences with gastroparesis. As a nurse living with gastroparesis, she describes how gastroparesis entered her life and how she managed to accomplish her goals while dealing with symptom management on a daily basis. "From doctors who told me it was all in my head to doctors who took the chance and gave me a new lease on life." After the Diagnosis: Transcending Chronic Illness by Julian Seifter and Betsy Seifter Dr. Julian Seifter was awakened to life with chronic illness when he discovered that he had diabetes. His life changed in many ways as he began seeing and experiencing the patient experience. In this book he "teaches you how to contend not only with the physical problems, the social stigma, and the emotional fallout of illness, but also with the medical establishment. Convinced that a deeper understanding of the spiritual, emotional, and physical challenges will bring not only comfort and support but also better care, he emphasizes truths rarely acknowledged in medical writing." Eight Days by Scott Thompson This book is not about illness itself, but I found it to be spiritually comforting as you journey with the character through thinking back over his life, prior to death. "Life's short when compared to enternity, but eternity is only worth it because of life." 30 Days of Hope for Strength in Chronic Illness by Elizabeth Evans Daily devotionals and prayers about life with chronic illness. Miracles from Heaven by Christy Beam This book, also made into a movie, was a true account written about Christy's and her daughter's experience with Chronic Intestinal Pseudo Obstruction and a form of gastroparesis. She describes not only the physical impact that illness had on her daughter, but also the emotional toll that it had on her and family, the dismissive attitudes from medical staff. The mission and advocating she had to do for her child as a result. But all is not bad, when faith is involved and certain people enter your life. If you have a book that you have found to be effective with coping and/or understanding life with chronic illness, please post in the comments below. I'm always looking for new thoughtful and helpful books to read.
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How do you say goodbye to the person you no longer are?
How do you grieve, find some level of acceptance, and move forward with the person that you have now become, since chronic illness made a presence in your life? I think it's reasonable to understand that chronic illness can and does negatively impact our lives in various ways. It causes, or at least it does me, to question who I am and what role I now have in society. When one unexpectedly becomes chronically ill, there is so much more to handle than just our condition(s). Often we, the patients, are using all of our available energy attempting to treat, or in many cases, tolerate, our symptoms as well as possible. Daily, we face limitations, some of which are visible, and others which are hidden. When chronic illness resides within us, more than just our physical life are tampered with, and unfortunately, in some situations, destroyed. The reality is that many people that live with chronic illnesses are.......
All of which dramatically alter and impact not only our's, but also our loved ones' lifestyles. These undesirable changes can create a LOT of confusion and uncertainty. Our identities, the ones that were familiar, the ones we created, and often the ones we defined ourselves by, suddenly disappear. Our new reality is scarier, stranger, unknown and flooded with uncertainties. Not only are we left suffering and trying to figure out how to best live with our new health conditions, but we are sometimes left emotionally suffering as we try to figure out our new "normal". Waking up one day to a strange body and eventually staring at a stranger in the mirror, one that you no longer recognize, can be agonizing. It's mentally exhausting and disheartening, especially when you can't seem to let go of your former self. How do you decipher your true identity, the one that is suppose to represent us for our entire life? Ideally, I think you would reflect up your talents, knowledge, skills, personality, and ultimately your "being". But what happens when you just see an empty blank slate? When the talents and skills that you once saw in yourself have become obsolete? When all of your most current knowledge seems to dwell on your medical experiences and personal research. Your personality bounces around from one extreme to the next as you try to protect yourself or the ones you love from the horrible symptoms, loneliness, and at times negative thoughts that poison your spirit day after day. Avoidance and distractions become the norm. Withdrawing yourself, so there is no one left to disappoint or feel disappointed by. For me personally, I catch myself trying to withdraw from everyone except my kids. I believe that it's important for us to recognize our tendancy to withdraw or isolate ourselves. Let's be honest, living with chronic illness is already isolating us enough. We don't need to isolate ourselves any further. We need positive personal connections to maintain our "humanness". Sounds easy, right? Hell, I wish that was the case. You see, when dealing with feeling physically awful day after day, facing nearly constant symptoms, missing out on special experiences and opportunities, letting others down with failed plans, and also dealing with negative consequences on account of your actions on a regular basis - your mind begins to be compromised as well. When you lose yourself, lose your identity, and no longer know who you are or what you have to offer, it becomes difficult, seemingly impossible, to communicate, share, encourage, support, or even genuinely connect with others. It's like the way you view yourself slowly begins to erode away. Everything you used to think about yourself is now challenged by your new limitations, placed on you by your own body. Reconsidering who you are deep down inside and having trouble defining yourself to the world can make it even harder to accept the realities of living with chronic illness. You start to feel angry, hopeless, helpless, resentful, damaged and yes, even depressed. Coping can become overwhelming and your new identity just isn’t as helpful or desirable as your old one, or at least that's been what it appears and feels like for me recently. Deep down I know that I am someone. I know that I try to help others when I can. I know that I'm kind and compassionate. I know that I'm a caring and loving parent. I just can't figure out how to redefine or reconnect with myself. I have been sick for over 5 years now. I was sick for a few years before I started losing my identity and self. I was able to hold on to my identity when I believed that I was going to be healed. My mentality or anxiety did NOT cause my illness. But, I can admit that the past couple of years have been a course of ups and downs as I struggle to live with the stress that chronic illness has placed on my daily life. However, I refuse to cave. I am determined to reclaim and identify with a newer version of my identity. One that is respectable, acceptable, and manageable for me. So let the quest continue... ------- If chronic illness has led you down a path of an identity crisis, I would love to hear your story. How did you redefine or reclaim your identity? Feel free to comment below or private message me via the contact form. As a patient with chronic illness, I have had many experiences with doctors and medical staff in clinics and hospitals, as an outpatient and an inpatient. I have undergone countless diagnostic tests, witnessed doctors that truly cared and wanted to help, as well as met some that were dismissive or unwilling to listen.
My health issues and experiences have made me more knowledgeable with healthcare and health advocacy. I have an interest in learning more about health and patient care via social media, current research, medical articles, and even TV series or movies. Currently, I enjoy watching THE GOOD DOCTOR, MYSTERY DIAGNOSIS, and GREY'S ANATOMY. However, my favorite medical show by far is THE RESIDENT on Fox. When watching THE RESIDENT, I find myself loving the characters of Conrad, Devon, Mina, and Nic. Why? Simply because they are in medical care for the right reason, to help and protect patients! Unlike other medical staff and beauracrats, they are not driven by greed. I am well aware that everything in THE RESIDENT is not accurate, that the real world does not function exactly like the show, that lines are grayer, and it's not realistic to expect doctors to take the extreme measures that they do on the show. However, it IS refreshing to see light and attention being brought to some of the negative aspects of our healthcare system. There are a lot of things going right, there are many exceptional doctors and nurses hidden in the often cold money-driven healthcare field, but also many areas and qualities that need improving. We need care and treatments to be with the best interest of the patient in mind. In regards to this TV series, I have thoroughly enjoyed watching all of THE RESIDENT episodes thus far, some watched more than once. It is a show that I eagerly wait for and actually stay up later than usual to watch. Yes, there are wonderful personalities, actors/actresses, and drama that aides in making the show pleasurable to watch; But the medical storylines and doctor-patient connections are what draw me in the most. Last night's episode, Season 1 Episode 6, was especially intriguing and compelling for me, as it focused around a patient that I could really relate to. (Beware: Possible Spoiler Alert) No, I do not have the same illness as him, though I am aware of MALS since some online friends have had it. The emotions that he portrayed, on the other hand, were extremely familiar. I could feel the pain, frustration, malnutrition, and testing fatigue, that having a misunderstood or unfamiliar GI condition can create. The most captivating patient of the night, was a young man that was suffering an injury partially due to malnutrition. He was facing nutritional deficiencies as a result of a chronic digestive problem that made it nearly impossible for him to eat. (Hmmm, ends up being a different condition than mine, but oh so real!!!) Throughout the episode, his goal was to feel better, but he desperately did not want to return to being a test dummy. He had learned from his medical experiences over the past 10 years, that doctors had no idea what was wrong with him or how to treat it. Therefore, he was hopeless about getting answers for his digestive health and nutrition and just wanted to correct the injury, then return to his "normal" life of suffering that he had unfortunately become accustomed to. YES!!! Finally, a TV show that demonstrates how patients sometimes have doctors - for years - that are unsure how to diagnose or help a patient that is literally starving from malnutrition! Like many other patients I know, his past doctors just left him to figure out how to deal with it on his own! Sadly, this happens ALL THE TIME in the Gastroparesis and Functional GI Disorder communities. This GI patient was pleading to just be left alone. He no longer wanted to be a pin cushion. He had been one too long already, with no answers or relief. Conrad, the ER resident doctor, was determined to help him without dragging him through a lot of unnecessary tests. Not surprsisingly, all of the "specialty" teams at the hospital swarmed in with a desire to run all kinds of tests, most of which he had already undergone numerous times before. Of course, they wanted their own tests (not another hospital's results) and saw the money that could be raked in - not taking any time to consider what stress and pain, physical and emotional, that additional testing would create for a patient that had accepted, as much as he possibly could anyway, living everyday with malnutrition and digestive pain. Not to mention, the psychological ("all in your head") ideology that's often thrown out there as a possible reason when doctors don't have the answers. Surprise, surprise. Isn't that a common diagnosis when a doctor is unable to figure out or "cure" someone from a chronic misunderstood condition? Especially one that is invisible. I'm not nieve. I am sure that doctors and/or nurses in the medical field will deny that some, maybe even most, of things in this show occur in real life. I'm sure that many pin point parts of the show that are "ridiculous" in a true hospital setting or possibly even humorous, just like I do when watching movies about teaching. As a patient though, this series speaks volumes. Every single day I witness, hear, and read about patients going through similar situations. In fact, I too have felt like a testing dummy with no answers or effective treatments, just test after test. It becomes frustrating, stressful, and tiresome. At times, I too have felt like completely avoiding ERs (or doctors) for any situation, regardless of how severe my symptoms are, simply because I have lost hope that anything can be done to help me. I am hesitant to even bother with undergoing further aggravating and undesirable testing. I, like many other GI patients, have to depend on trial and error, off label medications, in hopes of better controlling the symptoms with no end in sight. The majority of diagnostic test that chronic GI patients have to endure are not only painful, but often exasperate symptoms and create more discomfort or additional problems, yet provide no new ideas toward treatment. It gets discouraging and old really quickly. Sometimes you just want to be "fixed" and leave, as he did with his injury, regardless of the malnutrition or other GI issues that may be going on at the present moment. Regardless of the outcome. As chronic patients fighting an invisible GI illness, our condition is often mocked or ignored. I thought it was great how THE RESIDENT episode demonstrated this by showing the other doctors rambling on, ignoring the patient's opinion or story, arrogant, and more interested in money and countless testing, rather than the actual patient. Doctors that are nowhere to be found when hell breaks loose as a result of the tests' side effects on the patient. (Yep, these type of doctors due sadly exists in the real world.) Don't get me wrong, there are some valuable tests that can and need to be done, but retesting everything gets to be ridiculous and unnecessary. Meanwhile, Conrad took the time to listen and respect what the patient was thinking and experiencing. He was able to take into account the whole picture for this patient, seeing him as a person and not a price tag or business deal. Conrad was authentic and only wanted to help the patient reclaim his life, without the continuous pain and malnutrition. Conrad is the perfect, IDEAL doctor. He CONNECTS with the patient, RESPECTS his patients' need for QUALITY OF LIFE without pain, shows COMPASSION, LISTENS, and LOOKS OUT for his patients' bests interests. There is no "patient shaming" from him and for once the writers on a medical related show didn't portray the patient with chronic pain as someone searching for pain medication. (Not all chronically ill patients want or use prescription pain medications. Many patients, like me, actually avoid them at all cost, as they are aware of the stigma and realize how they can increase GI problems by slowing down the entire digestive system. Most of the ones that do require pain medications are just looking for some relief of some sort to get through the most painful times. ) So, in reality, are there any doctors that share the same desirable qualities seen in Conrad's character? Absolutely! I've been lucky enough to run across a few of them. Unfortunately, some of them are no longer in charge of my care due to circumstances outside of our control, such as moving. However, if given the opportunity, I would immediate run back and place my care in their hands as fast as possible. Are all doctors going to be able to solve every diagnosis or find the perfect treatment plan, as Conrad does on THE RESIDENT? Not necessarily. But, as a patient, that CAN be acceptable when you are able to trust your doctor completely and feel confident that he/she is on YOUR team, searching for what's best FOR YOU, and not just interested in the profit. Can you imagine the comfort and relief it would be as a patient if all doctors thought and reacted as Conrad does? To have doctors that make an effort to talk with you because they really want to HEAR about your health story and the impact it has on your life, in your own words, instead of just what your medical record states. In addition to Conrad's character, Devon's character (the intern), is also learning the importance of protecting and LISTENING to HIS patients. The action of listening is often neglected, yet is so simple and so meaningful to patients, especially patients dealing with chronic illness and fighting for a sustainable quality of life. Yes, I know that there are time restraints, electronic medical record requirements, and physician burn out issues. There's extra "paperwork" or responsibilities behind the scenes that patients aren't aware of. But, physicians actually taking the time to hear what their patients are saying and personally dealing with can be invaluable! Listening, empathizing, and understanding patients as a way to save lives, what a novel idea! This is just one major improvement that the health care system needs to reform! Personally, I will never forget the doctors that have been there for me. I likely wouldn't be here today if it weren't for a couple of compassionate doctors that took a moment to hear me, believe me, and respect my personal needs and quality of life. They will always be remembered and appreciated. Unfortunately, I've also had some that were set in there ways, couldn't admit that they didn't know how to help, or even placed blame on me - only to create additional issues, intensify symptoms, or make me have to deal with some issues much longer than necessary. My ultimate goal is to find more dependable "Conrad" doctors in the health care system and on my personal health team, and less of the "arrogant profit seekers." Anyway, I look forward to seeing what else THE RESIDENT has to offer in the upcoming episodes! I wonder what situations and conditions will be presented and portrayed? Who knows, maybe one day they will create an episode including functional GI disorders, such as gastroparesis or colonic inertia. Maybe awareness will be brought to enteral nutrition from feeding tubes, or an episode including patients with ostomies. I don't want or expect to see just the rainbows and sunshines, I want to see real issues with realistic treatments and responses. Will everyone be cured? No. Will it make people witness different medical conditions, procedures, and the positive and negative aspects of medical care? I sure hope so. I am worthy, like everyone else is, for effective healthcare. I have had, and continue to have, experiences with a variety of doctors in different locations and specialties with varied ranges of satisfaction. Some have been dismissive and uncaring, some friendly, compassionate and willing to help, and some have exceptionally gone above and beyond to help me discover improvements and regain a better quality of life. Below are a few of my personal thoughts about healthcare. They are not directed at any one specifically, but coming from concerns and fears that I currently have or have had during my health journey.
So how can a healthcare provider demonstrate effective healthcare for me? What are my expectations? 1) Acknowledge and convey that I am not crazy, my symptoms are not in my head, I am not exaggerating, and what I experience is real! Unless you have seen me during the extreme symptomatic times or personally experienced the pain and nausea on a daily basis every time YOU try to eat or drink something by mouth, do NOT judge or patronize me. 2) Treat me as an individual PERSON, not as a textbook example or just a case to deal with. Listen, truly listen, and hear what I am saying. Imagine yourself in my shoes. Respect that I know my body better than anyone else. If you respect me and understand my medical narrative, then I can better trust you and your suggestions. If you don't know how to best explain or understand my issue, please be honest with me. I'd rather know that you're unsure but willing to "think outside of the box", talk to colleagues, or conduct more research to learn alongside me, than be brushed off, ridiculed, or given up on. When you walk out the door, you may be able to put the paperwork aside and not think about it again. Unlike you, I have to deal and LIVE my life, with symptoms, every day. I can't close the door and forget what's ailing me. It's encouraging when I know I have a doctor that is dependable and invested in actually helping me when the time arises, even if they don't have all of the answers all of the time. 3) If labs come back abnormal and need immediate attention, please contact me. Don't make my primary or I jump hurdles or go on a scavenger hunt to find information that was needed as soon as possible. For example: Positive lab cultures for a central line and/or blood infection should be relayed to us immediately, not held on to for a week or more. I shouldn't have to keep asking over and over just to receive a copy of my own culture and lab results, ESPECIALLY if they were positive for an infection. 4) I'm aware of my risks! I do not take my health lightly. So, please value my needs and wants for an improved quality of life. In just this past year, our online support group lost more than 53 lives due to health complications including suicide, malnutrition, sepsis, and organ failure. Too many were dismissed or not listened to when they reached out for help from their personal doctors or were unable to find a doctor willing to take the time to help them because they were considered too complex! Friends that went to the ER for fluids because they were dehydrated, were mocked, judged, and blamed from the doctors and nurses that were suppose to take care of them. Some were even sent away with no help or answers, only to end with confusion, uncertainty, and unfortunately, even devastating outcomes. I realize the negative impact that chronic illness can have on all aspects of one's life, including dangerous risks and complications. So please respect my knowledge and help me understand what is the best possible treatment plan for me when taking EVERYTHING into consideration. I realize how important it is to have a medical team that communicates well. Yes, I may come with some fears or be hesitant at times, but I'm not being uncooperative, instead just being cautious because of similar past experiences that I or my friends have been through. In order for me to gain confidence or comfort in the treatment plan we discuss, I may need to ask questions, share concerns, or simply have time to think about it. 5) I respect that doctors have their own colleagues that they know and work alongside. I don't mind a doctor asking me or sharing information with me in the case that I may be interested in meeting or working with one of them. I promise that I will always listen to recommendations, along with reasoning, and consider my options, including doing my own research if necessary, before making a decision. In the case that I don't feel like it's the best choice for me at the time, if something changes, I will once again reconsider my options and the recommendation. Just give me the same respect if I share how I already have someone in that profession that I have developed a trusting bond with. One whom works extremely well with me, understands and has witnessed my health scenarios, helped me handle them for numerous years, and is an essential member of my health team. Trust me, finding caring trust-worthy doctors is not easy. Starting over with new doctors that are not familiar with where I've been, what I've experienced, the progress made, or the struggles that I still face with my health day after day for 5 years come February, is stressful and intimidating. I shouldn't have to keep being put on the spot to "prove" what I deal with. I deserve to have a medical team that knows me and understands me, that I feel comfortable with, and that I can have open, honest, and trustworthy communication with. 6) Do I want to roll a pole around all day with IV hydration or carry around my tube feeds all day? NO! They honestly can be a pain in the ASS some days! However, I am aware that they help me. They are keeping me stable, allowing me to function better at home, get out of the house for a few minutes with family on some days, and keep me from wobbling around in dizzy weak lightheaded spells. More than many may realize, I'd love to be able to eat or drink an adequate amount to meet my nutritional and hydrational needs. I'd love to be "normal" or even semi-normal again. But my body isn't there and likely never will be. I'm not dealing with a simple stomach bug! Saying that we're going to get more fluids in and remove the central line sounds easy enough in theory and looks great on paper. I understand that you are concerned. Even though it may not be true, when dealing with the consequences of minor attempts causing so much distress, it SOUNDS like I'm being told that I'm going to be stranded, left in a dehydrated state, and have to return to ER visits on a regular basis for fluid intervention. It SOUNDS like, I'm not being believed, that I don't know my body, that it's ok if I'm stuck at home lying on the couch like a lifeless log. It SOUNDS like my concerns and fears are not being heard. Will I try to follow my doctors' ideas and suggestions? Absolutely. I will continue to keep pushing limits and dealing with the painful nauseating consequences again and again, even if I'm already trying. Nonetheless, it is terrifying to consider that my fluids may be taken away and I'll have to return to the hell I faced prior to receiving them and when I attempted ceasing them during treatment with my prior GI. Yes, I get it, the medications are different and still being adjusted. Maybe, something will improve. We won't know unless we keep trying. I admit all of that may be true; The new medications may eventually help me improve my nutritional input with less severity in symptoms. What appears to be missing is that I DO TRY ALL THE TIME, which I vow to continue doing, and I STILL STRUGGLE with symptoms. The thought of being stranded and dehydrated or being forced to hesitate on a regular basis if the ER is necessary is terrifying. I hear you when you say that we will do it gradually, and appreciate that. Slowly decreasing fluids will be more helpful than a drastic halt. But, please hear me when I say that almost feels like a self-punishment, even when I AM keenly aware that it is being done with the best intentions and in an attempt to decrease my chance of a life-threatening infection. 7) Remember, I am me! My body works based on my health, my organs, my muscles, etc. I live with my body 24/7 while you may only see me for about 30-45 minutes every 3-4 months. There is no need to compare me to other people, especially ones with other illnesses. It is not reassuring. They are not me and I am not them. We are all individuals. The way my body reacts to treatment plans may not be as effective as it is for others. Similarly, certain treatments may work better or help me more than they help someone else. I've learned that treating my illness takes a lot of trial and error attempts and I can't help but become leery of changing something that is notably helping me. Saying that, a doctor can help me understand their point of view and/or reasoning by taking the time to explain exactly how the newest treatment plan(s) we discuss will be more reasonable than the current one for MY health, now and in the future. 8) Realize that ALIVE and LIVING are 2 different things: If it takes feeling unbearably awful to stay home pushing fluids in an uncooperative GI system, without help from IV fluids, just to stay alive, what's the point? If I become more miserable every day, and am literally just here surviving in discomfort, hope is lost, and the desire to be around decreases. If I must take risks to have some relief and energy, so I can actually LIVE with my family, go to the store with them, interact and help them around the house, attend church on some Sundays, etc.. is it not worth it? IV hydration has definitely helped me become more balanced. Being hydrated gives me a reason to keep striving forward with some hope that tomorrow or the next day may be a decent day to enjoy with my family, while also providing me time and limited energy, but energy nonetheless, to create family memories that help me face the consequences after or during the awful symptomatic times. At times I may choose to place emphasis on Quality of Life over Quantity of Life or vice versa. To be quite frank, if Quality of Life diminishes to levels that are hard to recognize or accept, that's when people are more likely to give up on life itself. That's when health seems to take a nose dive, hope disappears, and suicidal thoughts or worse become more pronounced. This is what I want to AVOID at all costs! However, I also don't want to take unnecessary risks for things that may be avoidable, such as infections or blood clots. It's a difficult line to draw in either direction. So PLEASE be PATIENT with me when situations like this occur, whether it's regarding IV fluids, tube feeds, new medications, side effects from medications, surgical interventions, etc. I am not being difficult! I may just need some time to adjust to the idea or figure out my personal comfort level. 9) While I need and want my health providers, regardless of specialty or level, to be comforting and encouraging while providing me with effective medical care, I don't want to be plagued with false hope. My hope has been crushed too many times and I now feel compelled to try and remain neutral. I try not to let my hope build too much, as I don't want to set my family or myself up for more disappointments or failures. I need realistic expectations and goals more than overly optimistic hope. I'd much rather be pleasantly surprised with unexpected positive results once in awhile, than repeatedly discouraged or hurt by expected improvements that do not occur and possibly may never be obtained. 10) Being friendly, smiling, and laughing are part of my character, even when I feel awful. These characteristics help me cope with feeling miserable. It is also my way of trying to comfort my family, especially my kids, so they do not worry about me. When you get to know me better, you will likely catch me trying to put on the "brave mask" as a way of protecting myself. I do not intentionally downplay my symptoms, but have been told that I do so quite often. For this hurdle, I apologize. However, if you actually listen to what my family and I describe, watch my body language, and try to relate, you will likely be able to tell the difference between my "coping positivity" and my genuine feelings. Eventually, with time and after trust is gained, I will feel more comfortable and become better able to be authentically vocalize my reality. In short, effective healthcare is seeing me as an individual PERSON, treating me with respect and empathy, providing me with honest medical care and knowledge of the positives and negatives regarding my health and treatment options, while also developing a relationship built on open communication. Together, my healthcare team and I can determine what the best course of action is for my personal health circumstances. When effective healthcare is provided, a healthier future can be made possible. And isn't that the ultimate goal? Maybe, it's the heart of an athlete and sports enthusiast within me. Maybe it's the idea of competition, teamwork, and give all you have mentality. Maybe it's a mysterious internal motivating factor. I don't know. What I do know is that living with chronic illness can be challenging in all facets of life.
In the chronic illness community, one often hears about the war that our bodies are fighting. Messages of how to remain strong, courageous, and brave as we fight each battle, some worse than others. You may be a "spoonie" or managing with an insignificant "battery", but you are a warrior. Things may be difficult or seem impossible, but if you keep fighting hard enough you can overcome. You just have to be strong and keep persevering. Or at least that's the way it sounds, right? Is that the impression that these comments are meant to give? The problem is, that while the above sounds positive and optomistic, it can also be perceived as damaging. When symptoms and illness have your health and spirit spiraling, even plummeting, I believe it's only natural to begin doubting your strength and reserves. Are the most challenging moments a result of not trying hard enough, are you too weak, not resilient enough? Are you hindered from improved health because you are too broken to be repaired, not significant enough, or simply just a failure? I know for a fact that that is NOT the case. We are all destined to move forward in life, all of us. Healthy or not, we will all eventually exhaust our time on Earth at one time or another. For those with chronic illness, some will learn to cope or deal with their illness and it's impact on their life better than others. Some will suffer more either physically, emotionally, or mentally. Some will masks their inner most feelings. Some will pretend or attempt to forget what they are dealing with. Others will try to overachieve with the goal of covering up or hiding the impact that illness has on their lives. My question is, does our outlook always have to be compared to a win/lose scenario? I know that some of the most beautiful-souls, faithful, caring, and determined people I know have already left our earthly home. It was not because they were weak or didn't try. It was not because they "lost" the war. For whatever reason, it was just their time. On the same notion, I am aware that some people give all that they can give and times just become too difficult for them to handle. Sadly, some have chosen to take their own lives in hopes of ending the suffering and pain that tormented them day after day. But was it because they were cowards or not strong enough? I don't think so. Instead, I think sometimes, regardless of whether it's accurate or not, people act in the moment out of desperation for a break from their reality, over possible guilt for burdening their loved ones, or loneliness from feeling isolated and withdrawn from society. Being sick all of the time can definitely weigh heavily on one's heart, soul, and perception of life. But, it does not mean that they were selfish or gave up. Is it possible that a different vantage point, an empathetic ear to talk to, a network of supportive loved ones and doctors, or clearer and more reasonable expectations (set by themselves or others) could help some remain hopeful during the most dreadful of days? The fact is no one knows exactly what someone else is going through. Hell, sometimes the person themselves don't even know. Being told to stay strong when someone is struggling, or to keep fighting while they're trying their absolute hardest, may help some hold on. It may give them a little encouragement. However, it may unintentionally hurt others, making them contemplate their own personal characteristics and how they measure up. (One just has to be mindful of how their comments may be interpreted.) I'm not gonna lie, my health and thoughts have taken me to some really dark and scary places. I have tried to remain strong, tried to be a faithful warrior, looked at health battles as either wins or losses. I have at times felt shameful, guilty, and weak. At those times, it was hard to look forward to the next day. It was difficult to comprehend how I could keep fighting so hard, with all I had in me. I saw myself as undeserving or inadequate. In some ways I felt like throwing in the towel or giving up, if for nothing else than to protect my family from being impacted or limited by my illness and continued shortcomings. At those moments, I could care less if I was being brave or strong. I felt feeble and powerless. I kept asking myself, what could I do to try harder or be stronger? How could I regain control of my body? What was I not doing well enough? Why was I failing at improving? Did I have to look at it from that angle, with the idea of constantly winning or losing a battle or war? Is it really an all or nothing situation? Is being brave or courageous in the eyes of others, going to remove fear or uncertainties? Does questioning your future health and worth, mean that you are a coward or quitter? I don't think that has to be the case, at least not in my present state of mind. The chaos of life is just that - LIFE! So if not a warrior fighting in a chronic illness war, then what is it? How can we explain this thing called life? How can we describe it or compare it to something similar that is not so cut and dry between two different ends of the spectrum? What can help ME accept the good and bad that comes with living day in and day out with illness? How can I view my life in a way that is inclusive for all of the wonderful and positive things in life, while also eliminating the severity of negativity during the most challenging times? In the past I have sometimes compared my health journey to a road trip or roller coaster, with all of the ups, downs, twist and turns. Full of laughter and thrills, but also uncertainties of what is yet to come. I have viewed myself as a crusader, striving for God's purpose, regardless of what trials I'm faced with. (Yes, I realize that crusaders fall into the "war-like" thinking, but not in my context.) I have also compared life to weather, with periods of storms followed by rainbows. While these metaphors can be useful, I just don't seem to think that they always do justice in describing the experiences I live. Road trips, roller coasters, and the weather all have something in common; They often underestimate the influence that events, other people, and prior experiences have on my life as a whole. They often remove the element of control that I have. A road trip may end at a designated destination, a roller coaster would drop me off in the exact same place that I began, and the weather, well it's just a continuous cycle without a desired outcome. I want to challenge myself to be able to view all of life's rewards while avoiding seeing the negatives and struggles as losses. Instead, my goal is to look at the tough times as events that help me gain new knowledge, experience, and growth. I want to be able to describe my health journey in way that respects everything and everyone that has already, is currently, and will eventually help me arrive at my ultimate destination - a mother striving for internal and spiritual growth with a meaningful purpose. I'm sure the majority of people with chronic illness, whether invisible or not, have faced the confusion of how to best answer the "how are you" question on a regular basis. Whether you are at home, work, hospital, store, etc this question is all too familiar. I know that most people ask out of habit, as it's natural to say these three words when greeting someone. Most people are accustomed to replying with an "okay", "fine", "good", or some other simple response. I am guilty of answering in that fashion often, especially around strangers that I don't know. However, like many, I am not always speaking the absolute truth, just trying to be polite.
It's easy when the person that you are speaking to is not familiar with you or your health and it's not imperative for them to know the truth, then quickly saying "fine" and moving on is alright. But what if it's a family member, friend, medical professional, colleague, or someone else that knows you personally? How do you answer the question then, especially on days when you really don't feel fine or when being falsely positive can be a hindrance in your care or best interests? Below are a few recent scenarios that have made answering the ordinary "how are you" complicated for me to answer.
As you can see the common question, "How are you?", can be complex to answer, with the normal "okay, fine, and good" answers carrying a variety of different meanings, sometimes accurate and sometimes just portraying what everyone, including me, wants to hear. Painsomnia Sucks! Once again, seems to be too often recently, I was awoken in the middle of the night with strong abdominal pain & intense nausea. The nausea was at extreme levels that made lying down or attempting to return to sleep impossible. Slowly, to avoid dizziness, I got up out of bed. Could I use the bathroom and reset my body to return to bed? No, the pain & nausea were relentless and I surely didn't want to wake my husband. So off I paced slowly to the kitchen. I had already consumed all of my normal medications prior to bedtime, including my 3rd does of my current antiemetic (Tigan). Not knowing what else to do, I scrambled to find a zofran to see if it would actually help. I then progressed to the couch & picked up my gallon sized ziplock bag, still there from the previous day, just in case I returned to heaving/retching once again.. I tried to slip into a slumber there on the couch, but after 10 minutes or so of agonizing discomfort, I moved to the floor. I attempted to escape my pain and nausea with calm relaxing floor stretches for a few minutes and then returned to the couch, still nauseated and crouched in pain. I literally felt as if my abdomen was going to be ripped into shreds. What the hell! What could be the cause of another night of painsomnia full of nausea? My next action, beginning to seem as if I am in a recurring state of motion, was to return my heating pad to the setting of “HI” and replace it on my abdomen once again as I stretched out in my recliner with a bag by my side, just in case the nausea evolved to more retching or vomiting. While everyone else (including my pets) peacefully slept as if nothing was wrong, I tried to breathe through the moments. Longing to find some relief, maybe an effective distraction, I tried to focus on what else I could try in the meantime. I mean who would want to sit by themself in the wee hours of the morning, in a dark quiet living room, with tears flooding their eyes as a result of the relentless nausea and unexpected gut wrenching pain? The heating pad, having to be checked often to ensure that it was on, is questionable in its’ effectiveness. I could tell that it was helping some, but no longer feel the heat that it provides. My abdomen has apparently become so accustomed to it being a regular accessory recently, that I have to touch my skin with my bare hand just to make sure that it is in fact hot. My next step, in an effort to reduce my symptoms, was to close my eyes and focus on my slow mindful breaths. There is no worrying, there is no panicking or anxiety , just slow breaths in and out to re-balance and allow my body to embrace and lessen the severity of my pain and nausea. What else can I do with my time? Is there anyway that I can be productive and use this time for something positive. Maybe check my email and delete some junk emails, sort some downloaded pictures, words with friends, twitter, read about the 8th grade and 10th grade math curriculum to better assist my kids, listen to some relaxing music from my playlist? Thankfully, my earbuds were right next to my recliner! Slowly my nausea started decreasing, though at a snail’s pace, to more tolerable levels. Not great by any means, but the extreme level of heaving diminished to a more controllable level. Though I still felt extremely nauseated, I was no longer at the point of dry heaving. (It’s now 2:40 am and all of this disturbance began around 12:39 am). But what about my abdomen? (I'm unsure if the current pain is radiating from my stomach or small intestines) The heating pad has steadily remained on it, I've verified that it's working by bare hand checks since the abdominal skin no longer seems able to distinguish he temperature on its’ own, apparently its become immune or accustomed to heat it provides. (This is likely why some people in the online support groups end up with burns from their heating pads. The spasmodic pain is so much, and heating pads turned to on high so often, that the skin cells apparently lose their sense of touch in some form or fashion.) So here I sit. All by myself, with a phone in my hand, typing away, trying to make sense of how I can best find some rest and relief from awful painsomnia & recurrent everlasting nausea at now, 3:30 in the morning. Exhausting all of my coping strategies (a warm bath was taken prior to bed as this current flare has been going on for days now). My eyelids heavy but unable to remain closed for effective rest. Debating if I should break down and take a tramadol just to see if it can end the present pain, since nothing else appears to help. I am keen aware that I have it available for a reason, this exact reason, but medicines for pain or not ideal for me. I don't want to become dependent on more medications. Pain medicine, while it helps momentarily, often leads to more issues later. So instead I will sit, hugging my heating pad, snuggling it tight against my bare abdomen under my t-shirt (yes my hands let me know that it's still producing heat) while slowly breathing in and out, postponing medication as long as possible. Praying that I can survive this painful wave all by myself, alluding any additional medications. In case you haven't realized it, painsomnia and relentless nausea absolutely sucks - and during the morning hours when I am suppose to be sleeping - it's even more frustrating and tiring. My body just doesn't seem to comprehend how to break this cycle or flare, whatever you want to call it, this past week! I don't know what set this course in motion this time. Was it the antibiotic or ibuprofen for my tooth infection and extraction a little over a week ago, the barium study from a week ago, the small banana I tried on Monday, or the little bit of ice cream I consumed on Wednesday? A combination of any of the above or possibly even from no fault of my own? I don't know. I think that's what's so exasperating as I have no clue how to effectively avoid these all too common flares. And when they start, it takes a while (days or in this case a week so far) to alleviate the extreme symptoms. Yet, somehow I'm suppose to keep trying. Regardless, I fight to convince myself to be "brave" and strive as hard as I can to improve nutritional intake (by tube and/or mouth). But at what costs? These attempts most often provoke increased troubling symptoms, leaving me feeling stupid for allowing myself to continue falling into this recycling pit. What's the point of demanding my body to take in nutrition if it's only going to keep me miserably nauseated and in pain? This week's pain has progressively gotten worse and harder to tolerate. My usual coping skills have been put to the tests, but my pain and relentless nausea continues anyway. Therefore, my plan for today is to simply resist any tube feeds or oral liquids in hopes of resetting my body. But first, I'm gonna try once again, with heating pad intact, to doze off in my recliner for a little bit, now that I'm not actually heaving anymore. I will, however, remain keeping a bag nearby just in case my nausea “sky rockets” once again. -------------- Update: It's now 3:20 pm. No sleep was ever achieved. My house has been full of activity today as my husband, pets, and children scurry around. My stomach is still under the heating pad. I haven't been able to part with it due to the continuous cramping pain I'm still experiencing. The family has been to the grocery store to purchase items for their Labor Day celebration. My daughter made some deviled eggs and brownies, while my husband grilled some ribs for their dinner today. The smells and aromas of food and seasoning have my nausea escalating once again. I have kept true to my word, no tube feeds have been started yet, and the only thing that has entered my mouth has been my routine nausea medication. This is insane and painful, hidden from others outside of my immediate family, but it's my life and unfortunately, I can't change the situation. Instead, I will have to muster up the strength and patience to wade through these extreme symptoms, heating pad and all as I'm determined not to visit the ER unless my ileostomy output completely stalls or in the off chance that a fever begins. Thank goodness, I have IV fluids at home to help keep me hydrated. The physical, social, and emotional impact that someone experiences while living with the challenges of having a chronic illness can be extremely overwhelming. In my case, physically dealing with persistent nausea, a range of abdominal discomfort to severe pain (depending on oral attempts and rate or duration of tube feeds), and fatigue take a toll on my body. My tube feeds and IV hydration require me to be connected to bags and poles for the majority of each day, though I do feel very fortunate to have them in place because they really do help. As exhausting as the physical symptoms are, they can also impact my social and emotional responses. Continuously feeling bad is hard enough, but, when I have to make a decision that is likely to make me feel worse, regardless of which choice I make, well that starts to be taxing on the social and emotional aspects of my life. Receiving adequate nutrition can be extremely challenging.
How do I tell my body that increasing feeds, increasing what or how much liquids I drink, or attempting to eat something (anything) is in my best interest when it creates pain and nausea? Similarly, how do I deny my body the nutrition, food, or liquids that my body needs and sometimes craves, while attempting to decrease my symptoms and misery, when it creates additional issues such as lack of energy, fatigue, and social isolation? The best answer, or at least what I'm trying to do, is find a balance, take turns based on how I'm feeling, test my boundaries as safely/carefully as possible, and accept that my body may have to face some related consequences which hopefully are not too severe. Accept, there's that word that we all have to dance around and think about. What is acceptance in relation to chronic illness? How do I decide what I can, could, or should accept in respects to my illness? (An earlier blog I wrote regarding my thoughts on reaching Acceptance can be read here.) I believe when someone is living with a chronic illness, it's important to reach a level of acceptance. It is necessary to understand and discover a way to find peace in one's self. However, I feel as if acceptance is forever evolving, something we have to continuously work on and consider, something that we have to continue working toward achieving. What we accept with chronic illness changes day by day and by the condition of our body and spirit in the moment. Acceptance is not the same as giving up or being complacent, instead, it's a sign that you are okay being you, even with illness, and that you will make the best of the situation. I also believe that acceptance is not the same for everybody. What I'm able to accept as far as my health condition and the limitations it creates, the treatments I'm willing to undergo, and the way I view the appliances I have to use (such as the feeding tube, IV PORT, and ileostomy) may or may not be accepted by another patient with similar needs. In addition, acceptance can vary as time progresses. For instance, I honestly believed that I had reached a point of acceptance for some of my issues. Unfortunately, I'm finding myself confused upon realization that I'm currently challenged with trying to accept the very things that I had previously accepted (or so I thought). Personally, I think that I must have accepted my feeding tube, lack of eating meals, and feeling sick daily when I could view it as a temporary situation, when I still had hope that it would eventually disappear, and saw the possibility that I could be healed. However, instead of getting better with time, the possibility of my health issues becoming permanent is sinking in and making me second guess what I should or shouldn't accept. Currently, I am trying to decipher how to cope long term with the effects and changes that my illness has on my overall life day after day. I'm currently trying to reach a comfortable and achievable level of acceptance with my illness and all that accompanies it, while also holding onto the idea that my condition can still improve if the right treatment plan is found and put in place. Since I've accepted the realization that I'm no longer the same person that I used to be, I am no longer hindered by grief over the loss of my prior self. Admittedly, I do still find it difficult to accept a part of me that I may never completely regain, good health, but I am also aware that my eyes have been opened to a world that I never truly understood. I have grown as a person, learned more about general health, body systems, and medical jargon than I ever imagined. I have also learned the value of having close family, a compassionate and caring medical team, and "true" friends. I may have had to face some of my weaknesses some honestly very scary times, but I have also discovered some strengths within myself that I didn't even know existed. My patience, self-esteem, and drive to continue forward has been tested in multiple ways over the past few years, but as so many other people with chronic illness have to do, I am learning to be resilient. Coping with the ongoing effects of chronic illness requires me to constantly redefine who I am and stand strong in my Faith, molded by the reality experienced as a result of my illness. All chronic conditions have the potential to take on a "life of their own", can make one feel powerless over their life, hopeless from the lack of control over one's illness and/or symptoms, and quite possibly isolated as a result of not only their illness but sometimes over the limited choices ahead of them. Functional GI disorders, such as gastroparesis and colonic inertia, are often misunderstood and unpredictable. This can be very frustrating to the patient as well as their doctors. We can all expect that there will be challenges and setbacks, some significant and possibly even overwhelming at times, but that does not always mean we are prepared for the lack of options, treatments, or answers that sometimes occur. When diagnostic testing requires you to put your body through tortuous hell with the understanding that it may not open up any new treatment options, you can't help but question how necessary the tests really are. I don't think anyone would want to voluntarily exacerbate the most troubling symptoms they experience just for the heck of it, but often that's exactly what we have do if we want a chance at discovering some answers and/or solutions. How can I teach myself to simply accept some of the horrible testing I have to undergo, accept the lack of options available to help me feel better, and allow myself to accept feeling sick the majority of the time without giving up on myself or my medical team too early? The persistence of symptoms makes it difficult for me to ignore, explain, and accept. Resisting or rebelling to accept the reality of my condition can cause me to push myself beyond what my body can handle, creating more exhaustion in the aftermath while I attempt to recover from my choices. Consequently, if I accept too much, I may unintentionally limit myself from reaching the best improvements possible. However, when it's all said and done, the best I can do is accept what I can in the moment and let the rest fall into place, then reevaluate the next time I begin to feel as if I'm struggling with acceptance. |
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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