"I know my storms are not over, but I also know that my God is faithful. With every storm, there will be a rainbow. What an awesome God we serve! Just when we think we have had all we can stand, the clouds break and the sun shines through. It's as if God is sending us a hug, to encourage, strengthen, and bless us on our journey." (30 Days of Hope for Strength in Chronic Illness by Elizabeth Evans ) How fitting this quote is! As I was riding down the road, with my kids in the back and my dad driving, I came across these words in the book I was reading. I stopped and reread the quote to myself, taking it all in, before I shared what I had read out loud.
God is Great! God has so much Love and Grace for each of us, every single day! Life is not perfect for any of us, some roads are trickier and bumpier than others, but we all have obstacles that we will face. I feel like I've been through the ringer physically, emotionally I have been pained, and mentally I have been exhausted. But through all of this, no matter how it feels at the moment, deep down I know that I am not alone! God is with me every single step along the way. I may overly doubt myself and mistrust others, but God is loyal, loving, dependable, and constant. The devil tries his damnest to bring me down, to help me cast negative judgements against myself, and attempts to make me feel like I'm running solo down a path of pain, sickness, and heartache. But GOD is UNSTOPPABLE. HE pulls me through time and time again. The past couple of weeks my fear about an upcoming trip was becoming louder and louder, almost causing me to freeze and cancel. I wasn't expecting to feel "well" for the trip, but became fearful that it was going to be too much on my body. My husband tried to warn me, make me rethink my decision. But I held steadfast. I put my Faith and Trust in God that the trip would be not only memorable, but positively treasured. Physically, I was expecting to have my normal symptoms and illness related restrictions and challenges, but mentally and emotionally, I needed and wanted this trip. You see, this was the first vacation that I would be partially sharing with my children, my dad, my brother, his wife, and my adorable little nephews. I, personally, have never been on vacation with my nephews, who are 4 and 6. The weather was perfect with nice breezes and little/no humidity. My family was so accepting and mindful of my personal needs. Early on we saw how easily my body would give out on me as we walked from the parking lot to the museum. But my family didn't let it bother them at all, which kept me feeling comfortable and at ease. My afternoon and evenings were spent at the hotel running fluids and relaxing, while they did other things together - such as swimming or walking around the town. My dad and son even went on a ghost walk together. My kids stayed up late with me to make sure I didn't fall asleep while running my IV fluids since my PICC line wasn't cooperating at all! When I was out with them, I was in a wheelchair/scooter, kept in the shade, or sitting in the AC of the car while they explored some of the sites we stopped at. No pressure, no judgements, and no expectations were placed on my body or me. I was truly able to enjoy and live in the moment, carefree of what anyone other than my family and me thought. We had fun! My nephew took charge of pushing me in the wheelchair as he enjoyed it so much! Must admit, he made the ride very interesting. The sickness I experienced was typical, the recovery period a little more than expected, but the experience of this vacation was oh so worthwhile! We all enjoyed the vacation and the memories from it will most definitely remain for a lifetime! I believe that God knew I was in desperate need of some encouragement and motivation, so HE ensured that a comforting "rainbow" was sent to me during the "storm" in the form of a wonderful vacation. My body may take time to refresh, but, emotionally my heart and mind was rewarded.
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My life was shattered when I became ill. Not only has constantly being sick since Feb 2013 impacted my daily health, how I feel, or how I function daily with my family, it also negatively impacted my life when it took away my ability to be in the classroom with my students. My GI disorders have shattered my nutritional intake, my patience, my strength, my optimism, my ability to actively participate in life with my kids, my purposeful living, and my meaningful career. It has shattered many aspects of who I am and who I desire to be.
I never looked at teaching as just a job, career, or paycheck. I knew before entering the profession, that I would not make a great living financially, that I would be underpaid, that I would be spending some of my personal money for classroom materials (didn't realize how much) - but the paycheck was never my motivating factor. TEACHING was. I chose a career in teaching because I truly enjoyed it. Teaching was my dream, passion, mission, and purpose. I was able to completely give my all, because I loved being an educator. As much as I hate being in front of others, talking in front of or even to adults, and being put on the spot, I was always in my comfort zone when teaching my students. The bonds, relationships, lessons learned and taught, laughs, discussions, improvements, student potential, and possible differences made while teaching were more than worth the amount of “work” I put in during the day and brought home at night and on weekends. The testing, I do not miss at all, the paperwork was awful (and argumentatively pointless) at times. The money provided to schools, classrooms, and teachers was a joke, but the actual teaching and student growth witnessed was captivating and extremely worthwhile to me. Were there challenges? Absolutely. Days I wanted to repeat, retry, or skip altogether? Yes. Changes that would have made the educational system better? Sure! Students that I possibly didn't reach as much as I hoped? Yes. I'm far from perfect. But, never would I have ever imagined that my teaching career would all crumble before me and end before I was ready to stop teaching. All because I became unexpectedly and chronically sick!! I can admit that the last 3 years I was actually in the classroom were very difficult due to my health, numerous doctor visits, and constantly feeling ill. I was trying to just get by to make it home and quite literally collapse in pain and fatigue. At the same time, I was lacking the nutrition and energy my body required to actually teach. I was spending too much time creating and writing substitute plans, which unfortunately meant more review or “book/worksheet” based learning from my students, rather than my own preference of lesson plans that I would have taught. My students were missing out on the hands-on activities, projects, and learning experiences as well as not being challenged or going as in-depth that we would have if I was able to be there. I spent many a days too nauseated to make it through a lesson or too lightheaded to move around the room. Days were spent with tears flooding in my eyes as I tried to catch a breath or moment of rest as they rushed through their lunch, while also attempting to prevent my students, colleagues, administration, and parents from seeing the intense pain or sickness that I was dealing with on a daily basis. Days were spent struggling to maintain my composure until a substitute could be found and able to come in to relieve/replace me for the day. Plans were adapted and changed at the last minute, for students and me, as unexpected sick calls mounted in the mornings due to extreme symptoms or impromptu feeding tube problems requiring medical attention. I put so much effort, love, time, and heart into truly getting to know each of my students, discovering ways to connect and reach them to my best ability, while also trying my best to be an inspirational teacher. I felt a sense of pride and fulfillment until this damn illness took over my body and required too much of my energy and time. I was not mentally ready to give up on or pause my dream of teaching. I was not mentally ready to say goodbye or leave it all behind. My world was shattered. My dreams were shattered. My identity and purpose were shattered. And to be honest, in many ways they are still shattered today. Physically, however, I know that I had no choice. I was too sick to be reliable, dependable, or physically stable in the classroom. I tried to be patient with my body. I tried teaching with the pain, nausea, fatigue, and sickness. I attempted tube feeding while teaching. But it just wasn’t enough to succeed or meet my basic expectations for me as a teacher. My students were not getting the education that they deserved, when my schedule and health were so unpredictable and negatively impacted. My body literally could not keep up. I was limited in ways I didn’t realize was possible. I lost the energy to search and discover meaningful ways to make the lessons intriguing, enlightening, exciting, challenging, and memorable for my students. I began having difficulty meeting my expectations and goals for the class, which was unfair to my students. My health required too much of my attention, medical leave and sick days were exhausted, and I was forced physically by my health and literally by my county to resign and go on long-term disability until my health stabilized or improved to a level where I could once again function to meet and exceed the needs of my students. My teaching was no longer significant enough to overcome the obstacles created by my health needs. I was no longer enough to make a lasting difference in my classroom. Instead of motivating and influencing my students, I unintentionally was holding them back from reaching their utmost potential during the school year. I was no longer able to meet their individual or classroom needs without destroying my body in the process. The daily transitions and routines became a struggle, full of uncertainty, and choppy for me and most likely the students as well. My body was failing me, and as a result, my career and passion were being stolen right out from under me. Now, I feel lost and empty. There’s a void that I don’t know how to refill. I fought hard to meet expectations during my childhood and educational years as I prepared myself to set out and conquer my goal of teaching. I followed the plan I set, I stayed focused, and I was on the path to achieving my dream of becoming the teacher that I had envisioned for so many years. I was on a successful and meaningful road, making my family and self proud. Living with a career that I strongly believe God had intended for me to live. Helping students see and believe in their individual and unique potentials, regardless of backgrounds or lives outside of the classroom. Incorporating compassion, trust, and a shared respect and love of learning. I had an opportunity to truly make a lasting difference by encouraging my students to visualize how education, dedication, and personal strengths could help pave a future full of possibilities and opportunities to achieve their own goals and dreams. I attempted to help them discover their identity not only as students, but also as leaders and collaborators, in and out of the classroom. I tried to help them see their value as citizens, to inspire them to communicate and work together with anyone and everyone, and guide them to respect and help others, regardless of their circumstances. Teaching was simply ME. It was MY LIFE outside of PARENTING. My DREAM. My PASSION. Now all of that has disappeared! At one time, I was hopeful that it would return, but as time passes the reality of my shattered dreams become clearer and seemingly more unreasonable. I miss teaching so much. It’s honestly heartbreaking to think about. I had all of it in my grasp until I became ill. Now there’s no meaning or purpose outside of parenting. At times, I can accept that since I love my kids and treasure the time I have with them more than anything. MY KIDS ARE MY LIFE! THEY are what is most important to and cherished by me. It’s just that it feels as if a part of me, a part of my purpose in life, my identity has been taken and is now missing. I’ve tried to discover a new purpose to strive for alongside my love and need for parenting. I’ve tried participating in online support groups, helping others live and cope with their chronic illnesses. I try advocating via social media about functional GI disorders such as, but not limited to, gastroparesis and colonic inertia. I’ve tried educating and advocating online about life with chronic illness, feeding tubes, ileostomies, etc. I have tried writing and blogging about my own personal health experiences and allow them to be shared publicly on the internet and in my friend's book. Sometimes, these attempts help me feel useful, but often I am missing the feelings of fulfillment and the intrinsic gratification. They often become repetitive and lack in the joy or feeling of personal achievement that I’m searching for. There is no doubt that I will continue to utilize social media to help others; It's just I'm trying to discover something more satisfying and meaningful to do as well. (Though, I'm not sure I will be successful in doing so.) Recently, I submitted the required documentation and evidence of professional development needed from the past 5 years in hopes of having my current teacher license renewed. My current license is valid until July. I have no intention of returning to the classroom at this moment in time, as I’m keenly aware that my body is not capable. Honestly, I’m unsure if I will ever be able to return to the classroom full time, though I still strive to hold out hope. However, in the meantime, I couldn’t face losing my teaching license as it would mentally and emotionally hurt me too much. It would be a sign of giving up to me, and would mean that I was a failure in regards to my lifelong dream and focus. Therefore, I’m fighting to at least keep a small part of my identity alive within myself, while hopefully protecting me from too much disappointment. Even though some of my dreams have been shattered, I still have so much to be thankful for. My life is not over. Therefore, I must find a way to accept my life even with the shattered pieces. Similar to dot art, up close each dot is just that a dot, just like each act in our life is simply an act. Often when looking at all the dots up close they may represent a mess of random dots with no resemblance of anything. However, when you take a step back, all the dots come together to create a beautiful work of art, sometimes even a masterpiece. Currently, all I see is a collection of random dots with no definitive image. One day, I hope to see them all come together to create something meaningful that will make God and my family proud. 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. 2017 may have not been an "ideal" year, but I honestly have to admit that it wasn't a wasted or horrible year either. Yes, there are things that could have gone better, health that would have been nice to see improved, activities that I wish I could have participated in, etc. However, while there were challenges, (there always will be), I learned a lot about myself. While facing fears and uncertainties, I gained courage and confidence. While in my low trenches, I survived by holding on to faith, depending on supportive family, and listening to advice from trusted medical team members. Along the way, I attempted to help others know that they are not alone with their health conditions.
Realizing the growth, regardless of how minimal, that I did accomplish in 2017, has lead me to no new resolutions in 2018. Instead, this year, I’m going to continue working on living in the moment, cherishing memories & time with kids and loved ones, using the knowledge and experiences from the past to make me more aware moving forward, and appreciate God’s continuous blessings & grace to help guide me along my life journey! I am realistic and know that more tough days will undoubtedly be ahead, a new year will not remove all the pain, sickness, or fears! There will be days I'll feel awful, symptoms that will feel unbearable, circumstances that will confront my resiliency, and events that will challenge my self-identity and perception. BUT, I feel comforted knowing that I will also have times of laughter, joy, and pride ahead of me. Enjoyment will be found and witnessed, sometimes in the most unexpected places. These positive moments will make life worth living, worth celebrating, and worth looking forward to and hanging on for. As a result.... this year I'm simply praying that 2018 has more ups than downs, more laughs than tears, & lots of loving memories that will last a lifetime and beyond! 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.
Follow your heart, not fear!
Recently, I decided to allow myself to follow my heart and desire of spending quality time with my kids, instead of listening to fears about any possible consequences of my actions. I was limited, excited, nervous and even concerned prior to the trip, but really wanted this experience with my kids. (Last year, I had to remain at home due to my health and promised my kids that I would do everything possible in order to participate this year.) Even though I would only be able be at the park for a short amount of time, I knew that I had to rent a scooter. I dreaded renting a scooter, but it was expected by my family, required for me to physically be able to join them, and actually essential in order to actually enjoy the environment. I am so glad that I bit my pride and prioritized living in the moment over avoiding possible judgement from strangers. Even with the scooter and the minimal time in attendance, I was still worn out physically. This was likely due to the ride there & standing in line for 30 min waiting for the park to open. (Thankfully, it was a cool evening and the park wasn't open during the day while they prepared for the fun Halloween festivities. We had get there early to be sure that a scooter would be available.) My family made it welcoming by not being ashamed or resentful of my limitations and clearly vocalized that they didn't care and it didn't matter what anyone else thought. The kids made the choice not to ride any rides, since I was with them, but instead decided to just experience the Halloween festivities. Cruising around the the park alongside them with monsters, ghouls, and eerie green fog was definitely entertaining! My kids' eagerness and excitement was contagious, so with their encouragement, I elected to enter 2 or 3 of the Halloween mazes. Due to fatigue, I remained on the scooter while they went through the other Halloween attractions. When waiting, I watched the other amusement park guests being scared by the zombies and monsters walking throughout the park, and talked with my husband. Due to my strength, we only stayed at the park for about 2 hours, but I haven’t laughed so hard in years. Returning to the car was extremely hard and taxing on me, even though we were parked close to the gate. Pain, stiffness, & fatigue made it challenging to get comfortable when returning to the camping cabin (Thankfully, I prepared by bring my heating pad!) Saturday, was an easy calm day at the cabin - too sore and fatigued to move around - but filled with such delight to be away from my house and relaxing with my family. They stayed at the cabin with me for most of the day watching football, cooking out, coloring, talking, etc before they returned back to the park to enjoy another night of spooky fun. I did not return the second night, but that was absolutely fine with me. Overcoming my fear, achieving my goal, pursuing my interest, and living in the moment, was exhilarating. I could have easily focused on what I couldn’t do, how fast by body fatigued, what I missed, etc —- but this time my spirit chose to focus on the love and heart’s desire for quality of life. The smiling, laughing, joy, happiness, connection with family, and even sore muscles (including cheeks from all of the smiles and laughter), made the experience everything I needed, wanted, and more! Witnessing their joy while feeling my heart beam - nothing else mattered. Did I still get sick on my trip? Yes Was pain obsolete? Not at all. It was still very present. Was sleep or lack of still an issue? Yes. Nausea? Yes, though I minimized it as much as possible by limiting intake a couple days prior to the trip and while away. Was the trip easy on my body? Absolutely not, it took days to rebound to my "normal" fatigue levels. But emotionally, it was more than worthwhile. Most importantly, I experienced a glimpse of life’s beauty, quality family time, happiness, & more of God’s blessings. I am so blessed and thankful for the encouragement from God, my family, & my doctor to help make this opportunity possible in my heart & mind. Hopefully, we will be able to repeat this vacation next October. In the meantime, I can guarantee that it will remain a cherished and treasured memory forever. Quotes from After the Diagnosis by Julian Seifter: "Travel, movement, and risks are ways to stay alive, to flex muscles, to feel more whole." "Testing the extremes may have been a way of locating the right balance." 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 |
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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