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.
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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? January 7, 2018
Wow! 2 years ago today, I made one of my most challenging and risky health decisions. I had my colon removed and an Ileostomy placed. It almost seems unreal that it has already been that long, as the memory of my struggles with colonic inertia prior to surgery are still very clear. In no way do I miss the hours of squirming around on the bathroom floor in extreme excruciating pain, the myriad of numerous laxatives needed every single day, or the tortuous hell of impactions and fissures. I know that I still face health obstacles daily, but, can honestly say, that after the recovery period, I have ABSOLUTELY NO REGRETS! In fact, I credit and genuinely respect my favorite GI for truly listening to my complaints, being concerned about my quality of life, and helping me discover the reasons as well as a solution for at least some of my complex and troubling issues. I also appreciate him for referring me to a wonderful surgeon, whom after listening to my concerns, conducted other tests (defecography and a second anorectal manometry) to determine if a reattachment would be applicable or if an ileostomy would be required. I firmly believe that we made the best choice for my specific situation. I am able to accept our decision (and my ileostomy) because we confirmed my pelvic floor dyssynergia would likely prevent a reattachment from being successful. In addition, my psychologist helped me prepare mentally and emotionally for the surgery and recovery, which was extremely beneficial. Yea, I'm the first to admit, my body is definitely not ideal. I still deal with GP symptoms of nausea, fatigue, and pain on a daily basis at varying degrees of severity. My body and health are still teaching me all kinds of new knowledge and experiences, many of which would have been nice to have been able to skip. I still depend on tube feeds and IV hydration to keep me nutritionally stabilized, work with medical doctors to help improve my physical health, team up with my psychologist to maintain my emotional health, and continue to put my trust in GOD to stay positive spiritually. I can't deny that there are times I get frustrated and irritated with my health. Sometimes, I get upset and feel like I’m becoming a misfit machine, wondering if I'll ever get better. However, when all is said and done, I am so thankful and blessed for the support I have around me and the medical interventions (regardless of how annoying they can be) that keep me here with my family. Days are not perfect, some far from, but there are still many marvelous moments to cherish! So......... HAPPY 2nd ANNIVERSARY "ILEO" !!! I acknowledge and welcome the improvements that you have made in my life. Because of you, the misery of waste removal has been eliminated. Because of you, endless hours spent crying in the bathroom are now spent sitting with family. Because of you, I've reduced the amount of medications entering my body. Most importantly, because of you, I've regained a few enhancements in my quality of life. 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. 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. This past weekend I remained home while my family went away for a weekend trip to the water park. While I don't like being left behind from vacations, I welcomed a little bit of "me" time. As crazy as it sounds, I'm still trying to physically recover from my outing earlier this month. Well that and the difficulty sleeping due to numerous nightmares each night over the past month or two. My lack of patience and levels of irritability have increased, which to me is a cue that I'm in need of some quiet 1 on 1 reflections.
During my necessary "me" time.... I enjoyed bonding with our new kitten. I attempted to journal and blog - both of which were unsuccessful. After deaccessing my PORT, I took a couple of long relaxing hot baths. I turned up the speaker volume and listened to my favorite songs. For some reason, the above just didn't quench my thirst to feel "normal" enough. I have spent so much time trying to be extra mindful and careful of meeting my medical needs and preventing (if that's even possible) undesirable symptoms. I've tried to stick solely to tube feeds, IV hydration, and only extremely low volumes of liquids. Quite literally, I was and am sick of playing it safe, to only feel discouraged and abnormal. I wanted to feel at least semi-normal. I wanted to take a chance at seeking and maybe even achieving some non-sick normalcy, even if it meant that I would have to face some consequences. However, at the same time, I was well aware that I didn't want to risks stupidity or create any harm. The thing is, I don't know what I am expecting or in search of. I know that there's a large spectrum of normalcy. Not everyone is the same. My normal is not the same as the next person's normal or the next. We all have our own "normal" which constantly evolves with time. Blah blah blah...... But what about when you look within yourself or at yourself from a different perspective and you no longer know what your normal is supposed to be like anymore? What about the times when you feel like a stranger in a stranger's body with a stranger's mindset? How is any of that normal? How do you accept your normalcy, whether it's desired or not, without completely retreating or withdrawing from yourself and others? Because to be quite honest, I'm exhausted from trying to be normal in everyone else's eyes while also trying to make myself understand and accept that my current normal can be ok. More recent deaths, both in my physical and online communities, cause me to contemplate how I can better improve the quality of my life. Anyone can become sick or sicker at a moment's notice. We ultimately do not have complete control over our health, no matter how much we may try. Similarly, tragic accidents happen everyday. We can try and take preventative measures, but those measures may or may not be enough to provide us more time with loved ones while we are here on Earth.
Realizing this confirms just how important it is for me to make each day count for something. My goal is to feel as if I am living, not just existing or wasting space, so when it's all said and done I'm not full of regrets. This is easy to say, harder to do, especially when attempts to "live" can cause immense fatigue or drastically increase my symptoms. Achieving an acceptable level of balance that respects all areas of my health (physical, emotional, and mental) while also limiting frustration, minimizing undesirable consequences, and reducing regrets is undoubtedly extremely challenging and even troublesome at times. So what can I do? How can I encourage myself to redefine my life with illness without sacrificing too much of me? Below are my current plans of action... Foster or participate in positive moments to reflect on with the kids Maintain memories by regularly writing in personal journal Work on completing the ALL ABOUT ME journal to be passed down to my kids Create Picture DVD videos for each child from old picture film canisters and memory cards Focus on and appreciate all of life's blessings, no matter how small Fight for the best possible healthcare Spend quality time with kids and family Stay up-to-date with research so I can make best educated choices Help others along health journey by sharing awareness, answering questions, and offering support Cuddle time with Pets Consider how I can continue to grow as a person (hobby, books, writing, online class, etc?) Have courage to live life true to me not others' expectations Take time to make conscious decisions each day that fulfill my personal needs/roles Take reasonable risks while accepting and being patient with myself during the consequences Live life less seriously to enjoy more moments in the moment Respond to myself the same way that I would treat a friend going through something similar Undoubtedly, no matter how devoted I am to the above goals, things will not always turn out the way that I expected or wanted. I will never be able to eliminate or avoid all regrets. Bad decisions will sometimes be made as I'm only human. However, when looking back with 20/20 hindsight, I need to remember why I made the decisions I did and remind myself about what my intentions were at the time. Even if I don't like the end results after some of my actions or choices, if they were made with the right intentions in mind I should not burden myself with any regrets. Living life with chronic illness does not mean life will be full of regrets. Life is what we make of it. |
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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