Giving my all, trying to find peace and grace within myself, searching for a better sense of my identity, striving to portray myself authentically while being true to my desires for life. Giving my all, discovering ways to feel useful, pursuing ways to grow spiritually, using experiences to strengthen relationships, while hopefully providing comfort and support to others. Giving my all, seeking ways to physically feel better, scrutinizing possible reasons for recent deterioration, reaching out for medical help despite reservations, while attempting to trust all medical advice given. Giving my all, writhing from unexplanable relentless pain, shivering and shaking from unyielding chills, crying out for something, anything, to make it stop, while praying that answers and relief would soon come. Giving my all, soliciting answers for the cause of my symptoms, patiently suffering in agonizing pain, heaving and vomiting with head pounding, while no one seemed to have a solution. Giving my all, confiding health concerns with my primary, wishing he could offer much needed assistance, graciously accepting his opinions and suggestions, while struggling to keep myself together without complaining. Giving my all, requesting records and cultures from an ED visit, making every effort possible to get copies to my primary, venturing out to get my hand on the actual results, while frustrated over the ED's lack of concern. Giving my all, secretly hiding my fears from family, relying on my primary to finally find some relief, following his orders to visit yet another ED, while completely feeling drained and depleted. Giving my all, preparing best as possible for a hospital admission, talking with my respected and reliable confidant, gaining control of my emotions and angst, while knowing I was about to be under the care of unfamiliar doctors. Giving my all, surrendering myself to their needles and tactics, relinquishing control to them and their treatments, repeating my health story again and again, while gaining confidence that the worst was finally going to be over. Giving my all, appreciating the doctors and nurses willing to help, acknowledging the blessing my primary has been, recognizing the importance of reaching out for his support, while gladly welcoming an end to my bacteremia chaos. --------------------------- Not sure what I would have done if it had not been for my primary stepping in and guiding me in the right direction. I knew something was not right with my body, feared that it could be an infection in my PORT or bloodstream, but couldn't get any answers or relief. After three separate ED visits, all within a couple of days span, I felt like I must be going crazy. I started doubting how much longer I could handle or deal with these horrifying symptoms. However, my primary communicated with me, believed my agony, knew that I typically avoid emergency departments at all costs, agreed something was definitely going on, predicted it could possibly be a bacteremia infection, remained persistent on seeing actual culture results himself, discovered I had klebsiella pneumonea infection in my PORT and bloodstream from the most recent ED visit's cultures, informed and prepared his ED team of doctors for my arrival, and ultimately ended this tormenting experience. My PORT had to be removed, a PICC line placed, and IV antibiotics for days during my hospitalization, but, I was so thankful! The medical team that took care of me was great and a new sense of comfort was discovered. Now I am aware that I do indeed have a primary that I can depend on. Moral of this experience: Trust your body! You know yourself better than anyone else. You shouldn't be afraid to reach out to your doctors in times of need. If you are not improving, don't try to sit back and ignore. Listen to what your body is saying and take action. It can literally be the difference between life and death sometimes. Luckily, the infection I had was treatable and not resistant to antibiotics. If it had continued to go untreated, it would have likely increased in severity, leading to possible sepsis. Sepsis can lead to organ failure and even death. A reminder of just how important and essential it is to have a doctor that you can trust and communicate with. Having a doctor that's invested in what's in your best interests is a valuable asset never to be taken for granted.
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Living with chronic illness is a full-time job, a volunteer career all on it's own, but it should only be a part of one's life. A rather large part of me believes that I should be so much more than what I currently am. The inner me, my spirit and soul, often feel irrelevant, meaningless, and unsuccessful. At times it feels as if my only purpose in life is to be a mother, which is the most amazing unexplainable blessing and miracle all on it's own, but is that really all that I can pr should be? I just don't believe that this is the case for me. Possibly, JoAnn LeMaistre's words explain how I feel best - "She had to come to realize that she need not stop growing as a person because of her illness. She knew that she had to coexist with pain and physical limitations, and not let it always dominate her life or self-definition." Does or should being sick have the authority to make me feel like nothing? Absolutely, not! So why is it that I sometimes feel inadequate as a person? Why is it that I feel as if my role in society has diminished since being ill and having to focus on setting my health needs as a priority? (After family and God, of course!) I am confident that I am doing all that I can, to manage my physical health needs, with the exception of expecting or pushing my limits too far at times. But, discovering meaning and purpose in my life, which is critical for my spiritual and emotional health, requires that I explore my inner self in more depth. Here is where it gets very tricky for me, as I have a tendency to be very critical toward myself, harshly judge myself, and unfairly set myself up for failure by trying to reach unreasonable expectations based on my pre-illness self. You would think that I would have learned by now, but I must agree that I can be rather hardheaded and stubborn. I'm in no way saying that I shouldn't have expectations, dreams, or goals to achieve. Instead, I am saying that I want to view myself differently. I hope to learn how to develop more patience toward myself, more acceptance for myself, better able to forgive myself, and no longer blame myself for things, such as illness, that are outside of my control. In other words, I desire to to see myself through the eyes of God and Jesus. I long for personal grace and truth, based on God's image. According to Dr Henry Cloud, "Grace when it is combined with truth, invites the true self, the "me" as I really am, into relationship." In other words, I intend to discover emotional and spiritual maturity within myself, while coming to terms with my true sense of self. According to Julien Seifter, "Most authentic growth depends not only on intention and effort but also on opening yourself to what has happened to you and letting experience change you." See the thing is, I know people who consistently blame me for their problems, criticize my choices, and discount my feelings are toxic to my self-esteem and damage my self-image. I admit that I have not done well at eliminating toxic people from my life. I have also noticed that with chronic illness, as struggles have overwhelmed me at times, my thoughts have betrayed me by adding toxicity to my own perspective of me. I guess this is more apparent to me now, as pain and suffering seem to have a way of bringing my strengths and weaknesses to the surface. Hence, I want God to help me be different, for Him to work inside of me to help me see his vision for me. In Micah Tyler's lyrical words, "I don't want to be stuck in a pattern" anymore. The truth of the matter is that my life is more difficult than I could have ever imagined, but it also has the capability to be far more richer than I could ever dream. At least that is what I'm counting on and hoping will happen as I strive to grow spiritually and emotionally, alongside my journey with physical illness. The question is how do I achieve it? How do I use my experiences and knowledge to grow and shine to my greatest ability, in a way that will make God proud and help me feel fulfilled? I believe the first step is to determine who and what adds the most meaning to my life and invest my energy and time in those relationships. What are those you may ask? This, I actually can answer quite easily: God, family, self, and teaching/helping others. I have been investing energy in my physical health with medical interventions and appointments, while also working diligently with my psychologist on better understanding and coping with the impacts of dealing with chronic illness (it's symptoms and impact on my quality of life) on a daily basis. In Julien Seifter's book, it is stated that "A doctor like a psychotherapist can promote a playful loosening of old ways of thinking and feeling and encourage a patient to open her mind to possibilities. A doctor can help a patient grow through time." I have found this to be true for me. My medical team and I continue to adjust medical treatments in an attempt to help my condition become more tolerable, since there is no cure to make it go away. My previous gastroenterologist and my psychologist, have both encouraged me and made me realize that I can still search and expect a higher quality of life, regardless of chronic illness. I just have to remember to be flexible and willing to explore the possibilities, while also being respectful of and listening to my personal health needs. I am giving all I have to try and continue strengthening and deepening my connections with my family more and more, even though we are already close. This is not always as easy as it sounds, as my health limits the amount of time or type of activity that I can handle. However, it has allowed our time together to be more communication based and passive, which can me amazingly rewarding. The conversations with those I love, well, they have opened my eyes to see, witness, and reiterate just how blessed I am to have them in my life. My Faith in God, His Comfort, His Love, His Grace, have gotten me through some extremely difficult circumstances and trials. I am praying that my connection to God will continue to strengthen and that He will use me and my trials as a way to help bring comfort to others through their struggles. To get to that point, I know I need to find the courage and confidence to step up and press forward in search of His purpose for me. I have to be willing to overcome my fears and hesitations. I must look within, Trust God's plan, and rebuild my inner strength by utilizing the strength that He provides me with. I need to surround myself with people, online or in person, that will enrich my life and challenge me emotionally, mentally, and spiritually while also respecting the health challenges that I'm exposed to daily. In order to accomplish these goals, I have chosen to read and complete the Changes That Heal book and workbook by Dr. Henry Cloud. I am hoping to be able to attend a few book study sessions to increase my understanding and healing, if my health cooperates, but I have also joined a related online group. Being a part of the online group will help hold me accountable, but even more importantly, will possibly develop an additional support system that can further improve my personal spiritual and emotional growth. 3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 5 For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. 6 If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. 7 And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort. (2 Corinthians 1:3-7 NIV) *Below are the links to the authors' books that were referenced above.* Changes that Heal (Book & Workbook) by Dr. Henry Cloud After the Diagnosis: from Crisis by JoAnn LeMaistre After the Diagnosis: Transcending Chronic Illness by Julian Seifter and Betsy Seifter When being faced with challenges in your life, regardless of whether they are related to your physical, emotional, mental, or spiritual health, it is not uncommon to feel uncertain about how to proceed in life. You can be given wonderful advice, often advice that you yourself would agree to, but still be left feeling misunderstood, confused, or maybe even lost and alone.
If you are like me, you still have a desire to live life. You want to be active and enjoy moments with those that you love, while also having an inner need to feel as if your life is meaningful and purposeful. But what do you do when you seem to get stuck? What do you do when illness, it's symptoms, it's limitations, it's impact on life, and even your fears of doubt and uncertainty attempt to hold you back? After reflecting on my own personal experiences, contemplating advice I've heard and read, while also considering suggestions of support that I offer my friends and loved ones when they are in need, I devised a plan. My main goal is to keep moving forward, by viewing and utilizing the obstacles that I face in life, not as a hindrance, but instead as GROWING POINTS. So how does one do that? How can the negatives in life lead to new outlooks and positive growth? Below is a general outline of points that may help improve personal growth. By no means have I mastered any of the following. I am still a work in progress and will continue to be for the remainder of my life. This list is more like a guideline for me. These reminders will hopefully aide me in helping those I care about, myself, and possibly even others, with the perspective of discovering and obtaining growth in the midst of our illness, pain, or suffering.
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 was challenged to write a letter to myself from the future me. Here's my best attempt.
Dear Current Self, I know that these past 4 ½ years have been physically demanding due to chronic sickness, numerous tests, medication trial and errors, hospital stays and a variety of procedures and surgeries. You have been pulled through the ringer. You’ve experienced unimaginable pain, fatigue, and nausea while also trying to determine how to fuel your body with much needed nutrition and hydration. These memories do not go away. They will continue to reappear as time passes by and your symptomatic illness continues. Just remember that there have been some improvements along the way. These obstacles have brought a lot of confusion, concern, and hurt, but have also made you realize the strength inside yourself that you may have never known existed. (I know, sometimes you feel the exact opposite, especially when the severity of symptoms increase to heightened levels or remain constant for long periods of time.) Those days and nights of screaming and squirming around in intense indescribable pain due to colonic inertia are gone. You are no longer required to take every possible laxative on a daily basis, adding to your discomfort, just to try and find a little speckle of relief. That was taken care of by you and your magnificent GI doctor, because he took the time to actually listen and care about you. How awesome is that! With his help, you’ve also improved hydration with home infusions and have been able to decrease the number of hospitalizations. The purpose of this letter is not to remind you of what is going wrong, just as it’s not to imply that things should have been or should be handled differently. You and your medical team are doing the best you can and what is perceived to be in your best interest during each specific moment in time. For the most part, you have been fortunate to have received some effective and compassionate medical care from doctors and nurses. (Yes, I am also aware that has not always been the case.) Unfortunately, you will always run the risks of having medical providers that do not listen, do not believe you, are unwilling to communicate, don’t appear to care about you as a person and/or do not value your quality of life standards. These unfortunate situations do occur, but, keep in mind the phenomenal medical relationships that you have had with your favorite all-time doctors and nurses and how much of a positive difference having them on your medical team has been for you along this long and difficult health journey. In the future, if you find yourself not feeling valued as a patient or have issues placing your trust in them, stand up for yourself and search for a physician that better meets YOUR needs. You deserve that! I see you trying, trying to stay realistically optimistic even when dealing with shattered plans, piercing physical pain, and relentless nausea (usually hours after oral attempts). I’ve seen you withstand the emotional strains that you have been through as a result of your chronic digestive and nutritional issues. I’ve heard you reach out for help in prayer or songs when part of you wanted to completely let go and leave all of the physical and emotional pain away forever. When you wanted nothing more than to quit on life because the sickness, symptoms, and it’s impact on your life felt too overwhelming to comprehend and face. I’ve witnessed you feeling miserable, unsteady, confused and sad due to the effects of your continuous illness. You’ve tried hiding your health and emotions from others, including yourself, in an attempt to avoid dealing with sickness. The reality is that you can not make the illness go away, avoiding it gets you nowhere. Death, whether from this or something else, is inevitable. You’ve felt the sadness of watching so many young people, some actual friends, die as a result of complications from gastroparesis (23 already in the past 5 months from just one of your support groups. Most of which were unexpected.) So many more are struggling with their health, having a difficult time finding appropriate medical and/or family support, even on hospice or palliative care. With that in mind, you understand the importance of convincing yourself that amongst all of the negativity of your chronic ailments, you also have many positives to strive ahead with and for. That’s the purpose of this letter, to encourage you take the best care of yourself - in all aspects of your life. You can begin by being kind to yourself. Stop criticizing and making unfair judgements against yourself. Your illness was not created by any fault of your own. You have done well at trying to understand and help your body heal, or at least function better. Unforeseen changes have occurred to your body, some of which at times impact your self image. These changes have been essential in keeping you out of the hospital. They have assisted in improving your quality of life, even though you still have a ways to go. Yes, there will be times that you hate how your body feels, and functions as well as it’s appearance; But it’s the only body that you have. God has provided you with this vessel. You may look and even feel like an alien or machine at times - but look at all the good things that come along with your adaptations. You want others to accept your differences? YOU must own them, accept them, and take pride in them yourself. Not sometimes, but ALL the time. Trust that you know when something is not right, trust that you know what your body and mind needs better than anyone else, and trust that you will reach out for help when you need it. You may hear or see that some people accuse you and others of sharing your health stories for sympathy. If this is ever the case, don’t pay it any mind as apparently they do not know you or your heart. You know with all of your being, that you don’t want to be the center of attention. You could care less if anyone outside your small circle of family and friends knows your name or individual story. Sharing your story with others comes at a risk. It’s outside your comfort zone, but that’s okay, just stay focused on why you do it - to help others that are facing similar struggles and increase awareness so better treatments and more research can become available, if not for you, for the younger generations. Follow your heart that’s all that really matters. If you listen to your heart, God will guide you in the right direction. Self-worth and purpose is essential to maintain when dealing with illness day in and day out. Some days you are going to withdraw yourself, hide behind a “mask”, want to be invisible, or appear “normal” - and all of that is okay. It’s perfectly fine to take it day by day or moment by moment. You have permission to authentically share your journey one day and the next be completely silent if that’s what your mind and/or body needs. You are not expected to be strong, courageous, and happy all day every single day. You are allowed to experience any and all emotions. The key is to maintain a healthy way of coping with a variety of emotions and all of their levels of severity. You have already discovered how beneficial writing and blogging is for you. Keep in mind that new ways of coping may appear along your journey as well. My advice to you is to live the rest of your life to the best degree possible. Not everyday is going to be a decent day. There are going to be bad days when you struggle. There are going to be days, possibly more than you anticipate or want, that are dark, scary, sick, and painful. There are going to be days when you hate yourself or feel as if you are alone and drowning. There are likely going to be even more days that you are weak, frustrated, defeated, and extremely fatigued. I’m sure that there will be days that you are hopeless and fighting with all of your might just to survive the present moment. Most likely there will be days when you feel like giving up, when you are unable to see anything but dreary days ahead again. You’ve been there before, and guess what, you are still here! You have persevered or managed to endure all of the challenges and obstacles that have come before you. Whether it was just taking one breath at a time, screaming/crying through tremendous pain, withstanding incomprehensible nausea, or educating others, you always find a way to keep moving forward. Sometimes it was by singing along with your favorite song lyrics, taking long hot soaks in the tub, listening to encouraging words from loved ones and friends, or simply laughing at the craziness or insanity of it all. Why? Because you realize that not everyday will be horrible. There will be days that may not be perfect, but manageable enough to push through and actually LIVE. There will be good days and even magnificent days ahead as long as you keep holding on. At times your days may feel as if they are constantly full of thunderstorm after thunderstorm. Yet, every storm will eventually calm at least for a little while, the rains will let up, skies will brighten, rainbows of blessings will even be visible between some storms. These brighter days are the moments that you must take advantage of, must live for, and must remember. The calmer days, even if they are damper than you’d prefer or drizzlin’ with pain, nausea, or other symptoms, need to be LIVED. These moments, when lived, will become extremely important to your mind and heart. You have to keep living, not just existing, but actually living! You need to continue to take reasonable risks, just not too risky, of having fun and creating memories with your kids and family. There is a reason that you are here, and I can guarantee that the reason is not to just sit back and let life pass you by while waiting to feel better. Fight to enjoy the “better” days, even if it takes days of preparation or recovery. At the same time, be mindful of what your body is telling you. (I know - it’s a very thin and shady line - and unfortunately, you will not always make the right decisions. Oh well, that’s life, right?) Will you have to make sacrifices? Of coarse! But you don’t have to always sacrifice YOU! Will you have consequences to pay? Yes! Only you can determine what’s worthwhile at the time. Will there be limitations? Absolutely. Energy, health, and strength will all play a part everyday.. Will your actions complicate or make symptoms worse? Likely at times, but what if not always? Just remember these few key points….. You and your life are not defined by your illness or emotions. I know that they play an undeniable part in your day. Lots of times your emotions become more complex to handle because they are the result of physically feeling horribly sick. I know that they help make you who you are. But not them alone! Your dreams, intentions, heart, goals, outlook on life, and faith make you who you are as well. Reflect on your emotions and desires. Whether by writing, blogging, mindfulness, or talking with others - be open to communicating how you feel and why you feel that way. Respect your emotions, all of them, Positive, negative, happy, sad, fright, guilt and all of the inbetweens. ALL of them matter because ALL of them make you who you are. Don’t ignore them. Don’t push them to the side. Embrace them and let them help you grow. Allow them to help you be the best you possible, allow them to strengthen your relationships, including within yourself, and allow them to keep you humble and genuine. BREATHE - It’s okay if that’s all you can manage at the moment, hour, day, or week. When you catch yourself in a negative frame of mind use that as a clue to rethink and redirect your thinking. Label the emotion and then ask yourself what you can do to make it less painful or more manageable? You are quick to encourage others, it’s okay to encourage yourself as well. Surround yourself with people that are there for you, people willing to provide you the encouragement you need when you are at your lowest. It doesn’t matter if they encourage you in person, online, or over the phone - as long as you have people that care about you and that you feel comfortable enough to turn to when times are most challenging, people that can bring you out of the darkness by reminding you of your strength, faith, and value. Have a purpose for each day, whether it’s in the form of self-care, fun, or simply helping others. Find a way to keep the purpose fresh in your mind to look back on when you question why you are trying so hard, why you are still existing, and why you matter. I suggests that you take a moment each day to jot down your key purpose for that day. (Possibly on a calendar, so it’s visible.) Sometimes your sole purpose for the day may be resting, recouping, or attending necessary medical appointments. Other days it may be observing your child’s ballgame or being present at a school function. Another may be comforting a loved one that’s going through a difficult time themselves, helping with homework, or running errands. But the point is, that you can and will do something meaningful each and every day! You’re not worthless, regardless if you feel so during the seemingly endless bad days, weeks, or months.. You have and can continue to make a difference in the lives of others, you just have to protect and take care of yourself along the way. You must be careful to pace yourself and not try to overextend yourself. The quality of relationships and experiences are far more important than the quantity. CHOOSE which activities are the worthwhile to you and your family. The purpose of your day does not have to last all day long - it can be short in duration, possibly lasting only an hour, yet still be meaningful or even essential. Search and Strive for true happiness - not just satisfaction. Take the time and initiative to ENJOY life and create treasured memories with family whenever the opportunity and mood becomes you. Sometimes you have to be willing to tackle the consequences later to discover the joy, happiness, and experience in the moment. Continue to express Faith with appreciation and express authentic gratitude for all that goes right. Trust that everything has a purpose and a positive side. Find peace with your decisions, choices, and yes, even mistakes!!! Accept that your illness impacts your life in more ways than you’d ever like to admit and without a doubt more than you ever want it to be, BUT there are still ways to enjoy life and make it meaningful and purposeful . YOU CAN HANDLE THIS!! You WILL do this! You WILL push the limits, you WILL fall, but you will also GET BACK UP. When it comes down to it, we can’t change yesterday and are not promised tomorrow. All we have is TODAY, so make each day count. Your parents, kids, and even yourself are not going to get any younger. Time is not going to stop while you try to feel better. You are going to have to “bite the bullet” and fight to remain ALIVE not only physically, but emotionally, and mentally as well. You're going to have to communicate and work alongside your medical team, including new ones, in determining and creating your healthcare treatment plans. If you successfully remain determined and stay on the correct track then you will be rewarded. Every time that you witness the joy in your children’s voices and eyes, attend graduations and weddings with tears of pride, observe the miracle and feel the little fingers of your future grandchildren, are reminded of loving memories shared with loved ones across the years, and feel the magnitude of love from God, your family, and even friends and students that you’ve had the opportunity to come to know along the way, you will realize exactly why……….. YOU NEVER GIVE UP and why YOU KEEP FIGHTING! Thank you for having faith in me! From the future version of yourself A positive attitude is essential in managing life and all of its' changes, including ones that are unexpected and appear to be undesirable. It's important to remind yourself that even if you are saddened, worried, or angry about an unexpected change, the final result may not be completely negative. Just because it feels extremely negative at the time, it will not necessarily stay that way. Sometimes, what seems like a problem, or even a disaster, could actually be a blessing in disguise. A negative event may help strengthen your ambition, motivation, faith, and emotional strength when all is said and done. The change may help improve the relationships that you have with family, friends, God, or even yourself. Eventually, the change can make you realize how strong and resilient you really are. Changes can help you reevaluate your priorities in life. They may also lead to new experiences, personal progress and success, new connections. The occurring change may not be easy to begin with, may even feel like a let down or leap in the wrong direction. However, in the long run it may help you make a difference in someone else's life or set things in motion to make you healthier or happier. Saying that, sometimes these unexpected changes surprise us. And yes, undoubtedly they may increase fear, heartache, and pain which are all signs that you are ALIVE! Emotions may go haywire - but isn't FEELING something better than feeling nothing? Trust me, I know that it may seem like life’s out to get you, simply because all you might be able to see is the bad, the worst case scenarios, the despair; but try to hold on to the possibility that eventually some silver linings will pop up. Heck, these unexpected changes may actually end up doing more good than harm in the long run.
At least that's what I'm TRYING to tell myself, trying to convince myself of this time. I can't say that I'm successfully achieving this thought pattern at the current moment, but I am TRYING. And well, sometimes that's all that we can do. Hold on tight and try to remain optimistic. In the midst of changes, current and upcoming, what can I do to actually better prepare myself? What plan can I put in place to make changes and transitions more tolerable? 1. Focus on doing better at living in the moment. Don't make any long-term plans or let my mind drift too far down the road of uncertainties and fears. The worries may be all for nothing. If I cannot control the actual change from occurring or the outcome, why waste energy on what-ifs that may or may not be an issue? Instead I should consider what I do have control over. Sounds great, right? I mean, it makes sense, would be logical, but is definitely challenging. I admit that I have quite a lot of room for improvement with this thinking process, especially when considering the changes I'm facing in regards to my medical team! So, how do I apply this advice in my current situation? I'm aware that I'm unable to change the fact that I have to deal with a new home nurse and in a couple of months, a new GI. (Both of whom have been an essential part of my medical team. Both of whom have helped me manage my health, understood my issues, and respectfully and empathetically communicated with me.) - I need to attempt to resist fighting my response and emotions. There is nothing wrong with voicing my fears, sadness, anger, frustration as long as I allow myself to express the emotions in a healthy way and then take a breath and continue forward in the best way possible. - I need to assess the situation by gathering pertinent information and evaluating what specific actions I should take to make the transition even smoother. For example: a) writing a letter expressing my appreciation to help find closure, b) filling prescriptions prior to insurance and physician change, c) contact GI early about medicines I need his assistance with to receive insurance coverage, d) write a list of questions/concerns to discuss with my current GI before he moves e) attend free online webinars to be better prepared for doctor's appointment f) meet new GI at final current GI appt to possible help ease the transition - I need to take a stand for myself by determining what is necessary for me to receive appropriate care, be willing to share (yikes) important information, and be confident that I know myself and am able to advocate for myself better than anyone else. - I need to stay open-minded, yet still remain cautious, until I get a good feel on how the new members of my medical team meet my healthcare needs. Reminding myself, that they will likely not be as awesome as the dream team I had, but that doesn't mean that they will be awful. Just need to give them a chance and then reevaluate if I believe that they can at least be adequate enough. - I need to hold on to faith that God is in control and will help me navigate these troubled waters. _ I need to maintain hope that my current GI will continue to look out for my best interests by choosing who will be in charge of my care when he leaves and by effectively educating my new GI about my medical issues. 3. If all else fails, or if I'm not comfortable with any member of my medical team after giving them a fair opportunity, then I need to remember that I always have an alternative plan available. If my new doctor or home nurse does not meet my acceptable expectations, I will begin to search for a different new doctor and/or nurse. (Without a doubt, I do NOT want to end up having to implement this plan.) What other choices do I have? With admiration and appreciation, I thank all of the phenomenal doctors that have been a part of my medical team. Inpatient or outpatient, doctors in all areas and specialties have the ability to make a lasting difference and impression in my life as a patient. The experiences that I've had, good and bad, have made me more aware of what I expect, need, desire, and appreciate from my medical providers.
Today, I want to personally and publically thank some of the most incredible doctors that I have worked with along my medical journey. Even though I would like to share their actual names, respecting their privacy is more important. Dear Dr Spectacular, Thank you for being my doctor Over the years, you've learned who I am. My health journey has been better, with you being a part of it. I appreciate your trust and perseverance. Through your actions and encouragement, you've kept me from giving up. Thank you for being by my side, Calling me out, when you knew I was downplaying my situation or symptoms. Thank you for choosing to listen with caring and compassionate attentiveness, For questioning me and having open dialogue to gain more clarity, For communicating with my family and other medical providers when necessary. Thank you for being REAL, empathetic, cautious and never intimidating, For your honesty and for the mutual respect we've shared. Thank you for helping me to remain optimistic, especially when my health is most challenging, And for your willingness to keep searching for the most effective treatment plan. Thank you for taking time during our appointments, never making me feel rushed, And for seeing me as a person, not just as a patient case. Thank you for always being prepared, with alternate back up plans available and ready. Thank you for understanding ME, remembering previous encounters, & not just following my chart. Thank you for encouraging me to communicate between appointments, And for quickly responding to my updates and questions, even if I was unsure about sharing. Thank you for taking me seriously, not writing me off or blaming me when an easy solution was nowhere to be found. Thank you for ensuring that I've always felt safe, respected, and heard when under your care. Thank you for taking the risks to invest your time and attention to my health needs, For tolerating my silence, shortcomings, and attempts to avoid "bothering" you. Thank you for the countless times you've reassured me that I was never a bother, For your confidence, kindness, knowledge, curiosity, and eagerness to assist me. Thank you for having the ability to see through me to the reality of my health's impact on daily life. With the utmost gratitude, I express my appreciation for you. I thank you for the positive impact you have made in my life, For always being patient with me, while also looking out for my best interests. We may not have all of the answers or solutions, but I thank you immensely for the improvements we have accomplished. Thank you for being a spectacular doctor! August of this year is now behind us, which has been known, unofficially, in the Gastroparesis community as Gastroparesis month. This year, no cure was found and we as a community are still struggling with finding effective treatments, but not all was lost. The Gastroparesis community actually has some reasons to celebrate! - AUGUST IS NOW OFFICIALLY ON THE NATIONAL HEALTH CALENDAR NOW!!!! Yahoo! This is outstanding news as now more people will become aware of what Gastroparesis is and hopefully it will help with the push for more research. We no longer have to request state proclamations to verify that our disease needs awareness or verify our cause. Much appreciation to IFFGD (International Foundation for Functional GI Disorders) for assisting in making this possible. - Prior to be on the National Calendar our Gastroparesis: Fighting for Change group had various members across the nation volunteer to request individual state proclamations. Yes, we were successful this year. We received state proclamations in approximately 1/2 of the US - some were for GP Awareness Weeks, others for GP Awareness Month. How exciting is that! Yes, my home state was one that was granted. - Miracles From Heaven - the movie - became available on DVD! What a great movie about Functional GI Motility Disorders, family, and faith. If you have not seen it yet, I would HIGHLY SUGGEST it! It is basically about a young girl that unexpectedly becomes very sick with Pseudo-obstruction (Her intestines were not functioning properly) and Gastroparesis (though it's not actually named in the movie, just briefly mentioned, the book and interviews have said that this was also a part of her health problem. (Gastroparesis is when the stomach is essentially partially or completely paralyzed and doesn't empty properly.) The movie doesn't fully describe the length of time that her illness lasted, but does a nice job relaying the pain and frustration we go through to receive proper medical care and the importance of support from family, friends, and faith. I can't honestly speak for everyone about how similar or accurate the symptoms are portrayed, as there is a vast spectrum of severity. I can say that I could relate very well to parts of this movie, but most importantly, to the pubic eye, especially the one's that don't live with GP or FGIMDs, it is eye-opening and an opportunity to build the discussion. - In the online GP community that I'm a member of, we have had many members have success at getting some awareness out locally in their own cities and states. Some have had movie days (watched Miracles from Heaven with family/friends or even church groups, some individuals have spoken and/or participated in medical conferences, others have created and shared awareness videos, some have been interviewed by local news (print, TV, and/or radio) to share their story and GP related facts, others have held meet-in-greets with other GPers that live near them. Additionally some members of our GP community have written and shared information in blogs, posted awareness meme's and facts on FB for their non-GP friends and family to read, and participated in events such as the #TAKEABITE4GP campaign and/or #Green4GP on various social media platforms. (TakeABite4GP is a campaign that a couple of our members began. The idea is to have people post pictures of themselves taking a bite for those of us that can't, to support of the GP community.) I must admit, is was great seeing so many non-GPers from all around the world share support for the GP community by sharing articles, pictures, comments, and more. A couple of GP friends and I were even nominated for the WEGO Health Activist Awards in one or more categories each. Even if none of us actually "win" being nominated is a "win" in and of itself as it helps us gain more awareness for Gastroparesis. - On the Twitter front, it's nice to see more and more medical institutions, medical providers, even research centers sharing more information about the need for Gastroparesis awareness, research, and more effective treatment options. - The Gastroparesis and Functional GI Motility Disorder communities are still trying to persuade Congress to approve #HR2311. This bill would help increase awareness, funding, and research for these illnesses, eventually leading to more health care provider being familiar with our illnesses, better treatment options, and possible one day a cure. We have had a few more Congressional Members co-sponsor the bill but we need more. Please help join us by emailing, calling, writing a letter, visiting, or even just signing our petition for support at https://buildquorum.com/actions/1996 |
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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