I recently discovered a new artist, Stine Bramsen. When listening to her music, two of her songs, which I have included below, really caught my attention. I know in reality that the her lyrics and messages are suppose to be different from my interpretations. I am aware that she is singing about relationships and the challenges that can occur. However, the way I personally relate to these songs, are not in regards to a romantic relationship with another person. Instead, they make me think about the relationship I have with my own body and chronic illness. 

You see, to me, her song "Not Giving Up" is an encouraging voice to my own personal health challenges. It represents the way I feel. It reminds me of how a conversation between my inner spirit and illness may go. No matter how hard I try, I can't get away from my body. My body, sometimes physically from chronic illness symptoms, sometimes mentally from being exhausted of coping and dealing with chronic illness on a daily basic, creates pain that I want to escape, but can't. My body, physically and at times mentally, can be, and often is, my body's worst enemy.

My body is ALWAYS trying to fool me. It tells me that it's hungry, needs nutrition, needs hydration, but when I attempt to provide it with what it needs, my body betrays me. Instead of just using the nutrition to help me, it creates crippling abdominal pain, bloating, nausea, and at times heaving or vomiting. My mind also fools me, persuading myself that this bite or swallow will have a different, more tolerable result, until I actually follow through. Then BAM! Consequences arise. Not to mention how little I can actually handle physically, before relentless exhaustion overcomes me. How the hell do you trust a body that is constantly deceiving you?

But, I have to stay. I can't trade my body in for a new one. The scars of my chronic illness are all over me, internally and externally. Scars from numerous surgeries and procedures. Scars from painful and negative medical experiences, hurtful judgmental comments, medical appointments gone bad, medication related side effects. Scars from missed opportunities with my kids whom I love immensely, and the loss of identity from leaving a career that meant so much to me. Scars that remind me of the path my body and health have led me down, scars that have an impact on how I view myself.  

I can't deny - there are times, low challenging and terrifying times, when I want to be completely be done with my body. Times that I have contemplated how I can end the pain because it just won't stop! Nobody cuts or harms me the way that my health has. Illness just won't give up on destroying how I feel.

At the same time, part of me is resilient and won't give up either. My soul is not giving up, it fights to put illness in it's place. I strive for better physical health, while also respecting my need to feel ALIVE, to feel like I am living and not just existing. My heart and voice are pushing me, not letting me give up on myself. Because of my family (especially my kids) and God, I keep living. I'm trying to let go of the grip pain has on me, let go of the bad memories, let go of the guilt that illness has made me feel, let go of the power that disappointments from being sick has made me feel, let go of the negative impacts being ill has had on my life and the way I view myself. I'm attempting to learn how to let go of the things that I can not change or control, while not giving up on ME.

I am appreciative of others that have not given up on me, and that have in return helped me to not give up on myself either, even if my illness itself will not give up and disappear. I thank my loved ones and the caring doctors that have been an essential part of my journey.

Unfortunately, not everyone has been encouraging, understanding, or supportive. There are people, some that know nothing about me, and some that were responsible for helping me, that bring me down with their irresponsible judgements. Admittedly, I too, have passed harsh judgement on myself. Most of the time I can forget and forgive those that pass judgement because I know that they don't know what life behind my front door looks like; but the hurt of being judged still appears and is still unnecessary. Even more so, the heartache of people in the chronic illness community, being denied help or dismissed from medical doctors or nurses that lack compassion or willingness to truly listen is inexcusable; Which brings me to the other song I found today by Stine Bramsen, "Don't Judge Me." 

Cruelty and judgments, even when deceivingly done behind my back, hit hard. Not only does it devalue or minimize the impact of my illness, but it also sends me down a misguided path of shock and despair. Just because one does not have the capability of feeling my pain, feeling my nausea, living the negative consequences of my illness, or witnessing the decisions and choices that I make (disregarding the costs that I will have to accept later in exchange), does not give them the right to judge. Trust me, I would have no reason to pretend or exaggerate. There are no gains that would make it worthwhile. Why would I choose a life of torture? I can't undo the painful truth of how horrible my body feels, I can't undo the honest truth about how much pain food causes, I can't undo how much fatigue I experience, I can't undo the amount of nausea and lack of sleep that I endure. I can't undo the reality of my health. I can't undo the harm that some judgments have on my spirit.

As Stine's beautiful and powerful lyrics say,
"I can't undo the painful truth, I can't undo, God knows I wish I could.
Don't judge me, cause I can't have, I can't have your blame on me,
cause you were not there, you were not there;
so don't judge me, I can't take it anymore."

Sometimes, I "need to hide my pain away" to try to reclaim and live life. It doesn't mean that I am not hurting. Sometimes, when smiles and laughs are seen by you, inside I feel like I'm crumbling apart or that my insides are about to explode at any moment from pain, or feel like I will soon begin heaving by the aromas around me or intense nausea, but I choose to hide it in order to help those I love enjoy moments with me. I sometimes hide my miserable symptoms to strive for something meaningful and cherished in my life.  I choose to hide my symptoms, to protect others from worrying about me, or in attempt to protect my own mentality and spirit, if only for a few moments. So unless you live with this illness, you will never know how life-changing and terrible this illness can be on one's life.

"You'll never know how I hurt inside. You'll never know how I've cried and cried and cried."
Unless you live with the daily pain and consequences of chronic illness, don't judge me or others.
"I don't deserve you hate on me." Neither do they.

Trust me, those closest to me, know that "I am hard enough on me" already. I already downplay and minimize the symptoms I experience more than I should. I judge myself harshly by what I can't accomplish but desire so much to do. I judge myself for what I miss out of in life (especially when it comes to my kids), for what I have had to give up (like my career). I judge myself critically for why I am not better yet. I judge myself unkindly for judging myself on things that are outside of my realm, outside of my control. So please don't judge me, I can't take your judgement or blame anymore.

Real Life Diaries: Living with Gastroparesis by Lynda Cheldelin Fell and Melissa Adams Vanhouten, includes personal heartfelt and thoughtful responses to inquisitive questions that other gastroparesis patients, as well as patients with chronic GI illnesses, family members, friends, or even medical professionals may have regarding life with Gastroparesisis and/or other chronic digestive disorders. 

The narratives provide readers with an inside view of the impact that chronic illness can have on one's physical, mental, and emotional health as well as their day to day lifestyle and the connections with those around them. Each of the stories are different, unique, and individualized while also sharing insight that others can appreciate and relate to. This book is not intended to diagnose or treat conditions, but rather an opportunity to learn more about some of the various symptoms, treatments, and knowledge that we've learned from our health experiences. The intention of the book is to make others more aware of their condition(s), recognition that they are NOT alone, and share ideas about treatments or procedures that one may choose to discuss with their personal medical team. 

If you are expecting to read a cure all, happy feel good, happy ending book - this is not the book for you. Instead, this is a realistic look into what patients feel, see, think, hear, fear, and even hope while learning how to live and cope with being chronically ill. Not only will you discover the impact that being sick may have on the patients' personal lives, but in some cases, how it impacts their social and family circle as well.

In addition to this book, I have also found the following books to be enlightening, educational, thought-provoking, encouraging, and/or helpful along my health journey. I will add to this list as I read and discover new books that I find to be beneficial.
(Clicking on the title will take you to the book's amazon page.)

Gastroparesis Healing Diet by Tammy Chang
Info regarding healthy eating and recipe advice from nutritionlist and patients.

Changes that Heal (Book & Workbook) by Dr. Henry Cloud
Book and workbook for deeper understanding in developing and healing yourself emotionally.

A Blessing In Disguise by Kristen Fox and Mel Kenaston
Blessings in Hidden Places by Kristen Fox and Mel Kenaston 
Both autobiographical books are from Kristen's personal perspective and experiences. Sadly, she has passed away since publishing her books. Kristen was also an online advocate, writing numerous articles for various sites, one of which was MTV.

After the Diagnosis: from Crisis by JoAnn LeMaistre
Written by a clinical psychologists, the reader is introduced to the six stages of emotional response to chronic illness that they, as a patient, may experience. The reader is walked through the stages of crisis, isolation, anger, reconstruction, intermittent depression, and finally renewal.
​
Gastroparesis: A Roadmap for Your Journey by Chelsey M McIntyre
As a pharmacist and person living with gastroparesis, Chelsey McIntyre shares what she has learned and experienced along her health journey. "Topics covered include foundational material on evaluating information, understanding what is happening to the body, and navigating medications, nutritional supplementation, and alternative therapies." 

Gastroparesis: My Personal Journey by Patricia L Rosati
Autobiographical book about Patricia Rosati's personal experiences with gastroparesis. As a nurse living with gastroparesis, she describes how gastroparesis entered her life and how she managed to accomplish her goals while dealing with symptom management on a daily basis. "From doctors who told me it was all in my head to doctors who took the chance and gave me a new lease on life."  
​​
After the Diagnosis: Transcending Chronic Illness by Julian Seifter and Betsy Seifter
Dr. Julian Seifter was awakened to life with chronic illness when he discovered that he had diabetes. His life changed in many ways as he began seeing and experiencing the patient experience. In this book he "teaches you how to contend not only with the physical problems, the social stigma, and the emotional fallout of illness, but also with the medical establishment. Convinced that a deeper understanding of the spiritual, emotional, and physical challenges will bring not only comfort and support but also better care, he emphasizes truths rarely acknowledged in medical writing."

Eight Days by Scott Thompson
This book is not about illness itself, but I found it to be spiritually comforting as you journey with the character through thinking back over his life, prior to death. "Life's short when compared to enternity, but eternity is only worth it because of life."

30 Days of Hope for Strength in Chronic Illness by Elizabeth Evans
Daily devotionals and prayers about life with chronic illness.

​Miracles from Heaven by Christy Beam
This book, also made into a movie, was a true account written about Christy's and her daughter's experience with Chronic Intestinal Pseudo Obstruction and a form of gastroparesis. She describes not only the physical impact that illness had on her daughter, but also the emotional toll that it had on her and family, the dismissive attitudes from medical staff. The mission and advocating she had to do for her child  as a result. But all is not bad, when faith is involved and certain people enter your life.

If you have a book that you have found to be effective with coping and/or understanding life with chronic illness, please post in the comments below. I'm always looking for new thoughtful and helpful books to read.

"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.

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. 

• What would you tell your best friend or a loved one in the same situation?
• Set reasonable expectations. Being flexible and patient with yourself if health interferes.
• Mistakes happen, use them for growing and improving, not self-blaming or self-punishment. Many people live through their lives blaming themselves or feeling guilty for just about everything that happens, including health limitations. We all go through life making mistakes or dealing with guilt, but it is how we respond to these situations that will make a difference on the person we become. Learn how to move past blaming yourself, so that you can continue on enjoying your life as a wiser, more empathetic, and knowledgeable person. Use your experiences and lessons learned to help others.
• Be patient, kind, and comforting, NOT critical of yourself. Look at all of the positive aspects of yourself, actions, and goals. You have so much to offer, even if you don't believe so at times. Try making a comprehensive lists of all the marvelous things about your personality and characteristics. Having trouble? Ask your loved ones for their opinions. 
• Journal or write about how you are feeling. Being reflective, expressing your emotions (good, bad, and everything in between) can help you better understand where you are coming from. It's a great way to unload, but also can be insightful and very therapeutic. Be sure to label the emotions, not yourself! (Example: I'm not a failure, but not being able to attend the school event made me FEEL like a failure as a mom.)
• LIVE life for God, self, and family. Disappearing or withdrawing may seem easier or like the best option at the time, but is it truly what would be best in the eyes of God or your family? Instead, what positive actions or deeds can you do to help others, regardless of your condition at the moment. Can you offer encouragement, guidance, or support to others? Pray for guidance and clarity to survive the tough times, while recognizing and appreciating all of your blessings. Have faith and trust in yourself and God's purpose. Instead of trying to exclude yourself, use your situation as an opportunity to strengthen your relationship with those you care about most.
• Remember that how others judge you, or how you perceive that they judge you, does not define who you really are, especially if they do not know much about you. You define yourself by your actions, thoughts, and beliefs!
• Find entertaining activities that you enjoy to help distract, redirect, and cope. (music, art, games, writing, exercising, talking, etc). I know that there are going to be times that you have to miss out or alter how you participate in certain events or activities. For me, I miss being physically active at theme parks, swimming, practicing sports in the yard with my kids, and teaching. I have no control over some of these limitations. However, I have come to enjoy searching for calmer, less physically demanding activities, such as listening to music, writing, reading by myself and playing board games, video games, and watching movies at home with my family. (Yes, there are days when even these are not possible.)
• Never Give Up! Ask for help when needed and don't try to handle everything independently. Share your fears, concerns, and thoughts with those you trust. Life is not meant to be handled on your own! Having someone to open up to can help you visualize and consider different scenarios, options, and perspectives. They can help you find light and air when you feel like you are suffocating in darkness.
• When seeking medical care, whether it's for physical health, mental health, or both, find a health professional that is an exceptionally good fit for you. It's important to feel respected and confident that you are being listened to, while not feeling inferior or judged. Finding someone that you are comfortable with, can openly communicate with, and whom you trust is looking out for your best interests is invaluable.
• Take care of you! Life, including illness, can be emotionally and physically exhausting. Know that you are NEVER ALONE! 

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 ​

In reality I am still a rookie when it comes to having an ileostomy bag. In January 2016, I had my colectomy with ileostomy surgery as a result of Colonic Inertia. I am still learning as I go, trying new suggestions, and maneuvering through this new experience. However, along my journey thus far, I have made some personal discoveries that make life with an ileostomy easier.

​1) Having an ileostomy has dramatically decreased the time that I have to spend in the bathroom! Emptying the bag literally takes a minute, whereas before surgery, it was common to stay in the bathroom for hours and hours before any relief was found.

​2) I have drastically reduced the amount of medications, specifically laxatives, that I was dependent on for day to day survival prior to my colectomy.

​3) Prior to surgery I was fearful of how often I was going to have to empty and change the bag. However, since surgery, I usually only have to visit the restroom a couple times a day (some people depending on their bodies and intake may be more often). The first month after having the ileostomy, I was having to change my bag numerous times a week, sometimes the same day. However, now, I only change it one to two times a week. Luckily, after the first month, leaks have not been an issue.

​4) I tried a few different styles of ileostomy bags. My current preference and favorite has been the Convex Hollister. I have found the 2 piece ones to be the most comfortable and dependable one for me.

​5) To keep the area around my stoma healthy, I use the stoma powder, barrier wipes, and moldable barrier rings. I prefer this much better than the stoma paste - though I had to use both the rings and paste to begin with until my stoma reached it's "normal" size. (It shrinks during the first month or two.)

​6.) I prefer to take a shower with my bag still attached, though some people actually like to take a shower without the bag. To begin with, I tried covering my bag with a plastic bag to keep it dry while taking a shower. However, that was a huge and unnecessary nuisance. There is no reason to cover the ileostomy bag to prevent it from getting wet. It dries very quickly on it's own. I have heard of some people drying theirs with a hair dryer. I'm not sure which brand of bag they use, but my Hollister bags dry fast enough without worrying with hair dryers or any other drying technique.

​7.) Swimming with an ileostomy is perfectly fine and rather easy. I was only able to go once for about 20 minutes, due to my health condition and current symptoms, but the bag was comfortably covered by my bathing suit and posed no problems or issues. Hopefully, by next summer, I will have my symptoms better managed and actually be able to enjoy the pool with my kids.

​8.) With an ileostomy bag you can wear any clothes that you are comfortable in. I love wearing my sweatpants and yoga pants/leggings around the house. When I go out in public, I am usually wearing either jeans or jean shorts.  The ileostomy bag is not noticeable under my clothes as long as it is empty (or near empty). I have found that wearing underwear that covers the entire bag is the most comfortable and desirable for me. I don't like it when the underwear "cuts" off in the middle of my bag. Most of the time I wear "normal" cotton underwear. If I am wearing a dress or if I am extra conscious about my bag for some reason, I will sometimes wear underwear that has some support, as they help keep the bag flat against my abdomen and reduce "ballooning."​

I may bend, but I refuse to break!

​Everyone faces their own trials through Earth's journey. Whether it's relationships, health, finances, inner struggles or a combination of all, we have choices to make. Some will be easy, some will be hard. But regardless, we hold the power to decide how we will handle the challenges.

​I choose to be ME! You can like me, love me, or even hate me, but I will remain true to myself.

I choose to remain kind. I choose to openly care. I choose to advocate for my health community.
I choose to maintain my faith in God and humanity. I choose to provide hope and inspiration to others when I can.
​
​There will be haters. There will be those that believe the world revolves around them. There will be backstabbers and fakers. There will be "friends" that appear to be around, but when called upon are nowhere to be found.

​See the thing is - though I may care what others think - my life does not depend on others' approval.
​If you don't love me for me, or respect me for what I stand for, then you can step out of my way.

​Life is not full of happiness and joy 24/7. Pain, sorrow, sickness, and tears are inevitable.

I choose not to sit silent! Criticism will not stop me. Mocking will not hinder me. The hurtful comments and words may put a dent in my spirit, but they will not break me. I will regain composure and continue marching forward.

​One thing I've learned in life is that nothing is perfect, no matter how hard you try. We must be willing to stand up when we fall, fight for our own wellbeing, be flexible, and willing to bend.

​I will not lie! I have experienced life struggles that have cracked me. More times than I can count I've depended on God to help heal my mind, heart, and soul when I felt like I was falling to pieces. Life has wounded me, my health has bruised me, people have disappointed me, tears and sorrows have drowned me.

​Faith in God and HIS plan has saved me numerous times.

​So while some sit high on their thrones, throw insults to injure, or make their judgemental accusations, I will stand tall! I will remain strong!

I have an amazing team of warriors in my corner and GOD as my leader.

​So attempt as you may, I will take your heat. I will bend, twist, and maybe even crack.

I will survive through disappointments. I will take my health one day at a time.
I will live from my heart.

​The devil and his messengers may try to destroy me.
God may send me on journeys that I don't completely understand or lead me into battles that are a test of my faith; All with a purpose of developing me into the masterpiece that HE envisions. 

I'll continue to accept all challenges and overcome any obstacles that become a part of my journey.
I have an everlasting trust that God will not allow me to fully break!
HE will continue to send calmness and support during my storms, even carrying me when I become too worn to endure any further.

God is my maker and HE is my protector.

​I may bend, but I will NOT break!

​© 2015-2017  Trisha Bundy  ALL RIGHTS RESERVED ​

 A "Me" weekend may be exactly what my body, mind, and soul needed. Initially, I was upset about having to stay behind while my family went on a fun-filled vacation. It was a difficult decision, but with the state I'm in health-wise, it was the only reasonable decision. I would have loved nothing more than to have been healthy enough to spend quality time with them on their trip, but it was just not possible this time. 

Instead of being sad, feeling down, or guilty I decided to use the time to listen to my inner spirit. I took a vacation of my own, right here in the comfort of my house. To start the homebound journey off in high spirits, I joined some of my online friends on a Fantasy Cruise. With superpowers, positivity, no illnesses, and no worries we set sail on a grand adventure full of silliness and laughter where all dreams could come true and everything was possible! We learned more about each other, outside of the Gastroparesis realm. This creative adventure was a fantastic reminder that we are more than our disease, much more.

Saturday was a "ME" day! Determined to rediscover my optimism and rebuild my inner strength, I relaxed. I allowed myself to be "sick". I didn't have to pretend to feel better than I was. I didn't have to portray strength, patience, or calmness. I could be exactly however I felt, as I didn't have to answer to anyone, didn't have to fight to hold myself together, didn't have to consider how my actions would impact my family's plans, didn't have to worry about anyone - not even myself. I was allowed time to be emotional if needed, whether it be anger, frustration, sadness, silly, etc. It didn't matter! I didn't have to "suck it up" or "try harder". I was on vacation from being the "Best Me Possible". I was free to just be!

So how did it all work out? There were ups and downs. My plan was not perfect, but that's okay. I played my favorite music, mostly contemporary Christian, wide open - even singing outloud at times. Don't laugh, or do, it's ok because no one had to hear my singing voice. Ha! I played around on the computer a little. Spent time writing, hence this blog. I was brave enough to attempt increasing oral intake, specifically some Italian Ice, Frozen Mocha, and even a little Chicken Broth. Unfortunately, none settled on my stomach at all. Luckily, I was able to drain the Ice and Mocha rather effortlessly from my G tube to find relief. The chicken broth made me truly sick, lying on the kitchen floor with pain, nausea, and near blacking out. But it was worth it!! And since I was on my "vacation" I could moan, cry, complain all I wanted. Or just lay in silence! It was completely up to me. I didn't have to consider how others would feel or respond. I didn't have to worry about who would see me crouched on the floor or what they would think or say. Eventually it passed and I was able to return to the living room with lesson learned - NO MORE SOUP BROTH! My nights were sleepless, my body was tortuous, BUT I SURVIVED! I didn't hold back my anguish but I also didn't lose my mindset. I had no need to think about how I was feeling, or how it was impacting my life, as I was able to just experience the moment (no matter how rough) and then keep moving on to the next moment - which eventually was more pleasant.

Without planning in advance, I was even able to get out of the house for a few minutes with my mom on Friday just to grab some ice and talk, then with my dad on Sat. I enjoyed our time talking and when my discomfort and exhaustion began settling in, they brought me back home. I didn't have to ask them or explain the situation to them. I wasn't upset, it was just another moment in life.  MY Life! I was able to enjoy our time together, why bother with being upset about the quanity of time, I was blessed to have had some quality time together? If by some chance I had been upset or mad with my body, it would have been totally alright!!

So the question is why can't I live in this carefree state more often? Why am I always so critical of myself?

Don't get me wrong, I love my family more than life itself. I love my husband and love my kids, want to vacation with them, want to experience life with them day after day, and miss them greatly when they are away. It's just that I love them so much that I spend so much energy trying to "be better" or "appear better." I spend energy that I don't always have just to "be present" during the time they are around, energy spent "acting" like everything is okay or going to be okay. Energy spent trying to decide if attempting to eat or drink something, will create a shadow on their day or impede their plans. Sometimes I think I spend too much time being the "me" that my family needs and expects, the me that I envision, the "me" that doesn't disappoint, and the "me" that is in control that I forget how to just be ME!

As I sit here with my family, patiently and eagerly waiting to say goodbye to 2015, I can't help but reminisce.

This year has been a difficult one for me that is for sure, both physically and emotionally. It would be so easy to be lost in all the day in and out pain with nausea, personal disappointments, losing who I was, uncomfortable medical tests, horrendous trial and error treatments, self-doubts, and sadness of friends that collected their angel wings.

However, I choose to end the year in the same fashion I hope to live the new one - in positivity. I have so many blessings that occurred through my journey this past year. God has a reason for all of the obstacles I have come across; I just have to open my eyes and allow my heart to see them.

So with gratitude I am going to share why 2015 was a GREAT YEAR, even with my illness.

- Learning to let God carry me, when I felt like I could endure no more.
- Stronger & Deeper relationship with my family, as I relied on their assistance & love.
- Increased appreciation for the little things, that are easy to take for granted.
- Friendships formed across the world, throughout the US, Germany, UK, Australia, and beyond.
- Self-discovery through personal blogging & facing fears head on 
- Learning from great inspirational friends how to be advocate, draw strength, and help others by stepping out of my comfort zone and sharing my story. ​​​​​​
- Trusting myself, God, family, friends, and even my Drs while also having the bravery to speak up about what I needed.

So out with the old year and in with the New -
 but keeping my mind set on the gratitude that's due!​​​

I created this video to help spread awareness for Gastroparesis, Colonic Inertia, and other Invisible Illnesses while also attempting to spread a message of hope to all who watch. Thank you for taking the time to watch the video.
(Below the video, I attached the written blog.) 

Today marks the beginning of Gastroparesis Awareness Month. Our advocacy group has been busy the past few weeks requesting Proclamations from each of our states. (NC did approve request for Gastroparesis Awareness Week)

In the spirit of raising awareness, I chose to create my own personal video this year. The purpose of the video is to show how Gastroparesis can unexpectedly and drastically impact someone's life as well as the rest of their family. This feat was not easy. In fact, it was a difficult task because I hate seeing myself in pictures or on videos. However, awareness is so critical.

 Who am I? 

Years ago, when I was a young girl in first and second grade, inquiring minds asked me what I dreamed to be when I grew up? Always, my answer was a teacher, an elementary teacher. Yes, I thought about having a second or even third job along with teaching - like being an astronaut, coach, and bus driver as I taught. Crazy isn't it? But I knew, with no doubt in my mind, that I wanted to be a teacher. Scratch that. I knew that I WAS going to be a teacher when I grew up. 

As many young children that dream of being a school teacher, I taught my stuffed animals, baby dolls, friends, and even brother in my make-shift classroom. Worksheets, workbooks, reading books were passed out daily. I graded papers, scolded children, led reading instruction, had students or myself take names on the chalkboard, etc. I KNEW what my passion was and was determined to make my dream a reality. 

Years passed by and my passion for teaching grew stronger and stronger. The more experience I gained from helping in children's church, babysitting and child care classes in high school, the more convinced I was that teaching was my purpose in life. I had everything figured out. My life was going to be grand! (Minus the high income of coarse.)

My college years were no different. I absolutely LOVED teaching at the local daycare when I was not in class. My favorite classes, hands down, were my practicum classes. Being in front of a classroom felt amazing. My life of purpose and helping others had been found. God led me to teaching, I was following the path he laid before me, and life was great!

In the fall of 2000, my dream was achieved! My career as an elementary teacher was beginning! I was going to make a difference in the lives of children and our community. I had a calling and I was going to give my absolute best to be the best possible teacher I could be. When inquiring minds asked what I did for a living, I proudly responded that I was a teacher and I absolutely loved it and my students. I was proud of my accomplishments as well as my students. My students truly became a part of my extended family. 

Looking back on the past 15 years I've given my heart to teaching. Countless hours, priceless memories, wonderful connections, exciting experiences, and unforgettable teaching moments flood my memory. I know that I'm not perfect, God knows there are many lessons learned, I only pray that I have made an impact and difference in the lives of at least some of my students! They definitely made a difference in mine.

Today, Fall 2015, I have begun to close a part of that chapter of my life. My daughters and I went to "MY" classroom this morning to remove my personal items and materials. For the first time in my entire life, I am having to face the world of uncertainty? Yes, I am still employed with the school system while on medical leave, but I no longer have my position I loved so much. I know that when I'm better, I will have a position in the school system, but returning to my current school is not for certain. I can't honestly say which school I will be assigned to or what grade I will be responsible for. Just that I have a position being saved for me in our school district. Uncertainty, an awful feeling of uncertainty. My words can not describe this feeling accurately. I am hoping that one day, a sequel to my first 15 years in the classroom will be written. Until then.........................

So what do I say now to inquiring minds? How do I answer what I am now? Just saying that I am a teacher on medical leave doesn't answer the question does it? I don't have a title anymore. I'm just here. 

But then again, through my health journey, God has blessed me with some outstanding friends online. These friends have helped me through some extremely difficult days. When I start to feel like giving up, or hopeless, they always jump right in to motivate and bring me up emotionally. I am so very blessed to be connected with them, as they know and understand my battle with Gastroparesis better than anyone else I know, as they are living with it as well. These new friends are great encouragers and the strongest, bravest, kindest people I've ever known. If it weren't for God, my family, and my friends met through Gastroparesis, I honestly don't know where I would be today.

So the question is.... Who am I today?
I am a teacher! 

I am a teacher on medical leave waiting until my body heals and God sends me back to the classroom.

I am a teacher, educating others about Gastroparesis and Feeding Tubes, not only to help those diagnosed, but also to help spread public awareness in an effort to increase understanding, funding, research, and hopefully better treatment options or, better yet, a cure. 

I am a mother to 3 wonderful children, the most amazing blessings in my life.

I am ME!

I am bewildered at how I can experience so much pride and joy, while also feeling like my body is going to completely collapse from nausea, pain, and fatigue. Let me explain..

This year has been an awful year for my health, even though I had high hopes in Dec that this would be the year my health improved and turned around, finally! So far not the case.

Yesterday, was a very important, worthwhile, and valued day for my family, my students, and me. I have not been in the classroom, or even been able to visit my fifth graders since late Oct. Though I was already feeling drained and nauseous, I was also eager to surprise them with a visit. I slowly (because that's how my body works now) made it to the back hall of the school, stopping before I entered to lean against the wall and catch my breath. I had 3 classes to visit, all right there together. I didn't know what to expect from the students, it had been so long since I had seen them. However, the reactions of my Homeroom floored me, the other 2 classes very similar. They were so excited and hurriedly came to flood me with hugs. After all the hugs were given (which meant the world to me), I talked with them for a few minutes, all 3 classes, sharing with them how beautiful and handsome they looked, how I was sorry for only physically being their teacher for a short period of time this year, but how my thoughts had been with them all year long. I shared how bad I had really wanted to improve and return, but just didn't happen that way. I went on to share how very proud I was of them, how their teachers had been keeping me up to date, as well as my daughter (as she was one of their classmates), and how blessed we were with Mrs. Kyle being able to continue being their substitute all year long. 

After visiting all 3 classes, I slowly made my way up to the front of the building. I honestly thought and believed I was going to collapse before getting there, but kept fighting forward. My mom was not pleased by the way I looked at all, and though I tried standing and waiting, alongside the other parents, she insisted I sit down until we were able to progress to the auditorium for the 5th grade promotion ceremony. It seemed like hours, though only minutes. I was so exhausted, but tried to put on my strong "have-it-together" composure, and made it to the auditorium. As we were sitting there it was evident how weak and awful I was feeling. My husband, whom had chosen to sit in the back of the auditorium (easy access out to leave) even came to check on me as he could tell I wasn't doing to well. (My mom and I were sitting up front for better pics). We had about 20 mins before the program began, my nausea just continued increasing to the point I felt like I was going to begin heaving, my energy was to the point that I was slooped in my chair in an effort to provide a place to rest my head.

 The ceremony was great! My daughter made me so very proud, receiving numerous awards for all of her hard work, dedication, and effort this year - even with all of the challenges at home due to my illness and her tearful heartaches from me not being there to be her teacher this year. My pride was at it's highest, though my physical turmoil was becoming unbearable. 

After returning home, I was able to take in the days' events. Thinking about the ceremony, thinking about the visit. I tried to consider if I had been genuine. Thought about the comments that were made to me by the students, other staff members, and parents. For the most part, the questions were fairly simple and routine, with a simple "I'm hanging in", "I'm happy to be here", "Thank you for your prayers", "I'm so proud of your child" offered as my response.  However, the comments-especially from the students- just resonated within me, most of which I chose not to follow with a comment - as I was trying my best to stay positive. Many students and a few parents commented on how different I looked, how I didn't look like myself, and how much weight I have lost.  A few years ago these comments would have been welcomed and greatly appreciated, yet now, they are a reminder of my horrendous health journey with an invisible illness that no-one seems to understand.

But my day did not end here, it continued on to my daughter's final softball game of the season. I could not let her down, regardless of how bad I felt! I had to pull it together and be there for her. The game was a good one, concentration a bit difficult for me, dizzy spells and heavy eyes interfering for me, but I was there. And that in itself was extremely important. I was unbalanced when it was time to stand up and return to our car, but my chair offered a "cane-like" presence and other cars were great at keeping me upright. I made it to the car successfully and was able to offer my daughter encouragement and celebratory comments. 

Finally, we were able to return home. A Shower, that I had to sit down and regain energy for prior to. Then bedtime after hugs. No way could I keep my body up, even for just a few minutes. I was a wobbly mess to reckon with. Drifted off to sleep immediately.

After a great night of sleep, I woke up mentally refreshed possibly, but symptoms galore. My body literally felt like it had been run over by a train. All of my muscles hurt so bad, nausea intense, and no energy whatsoever. Multiple times I had to stop and save this article, just so I could get some rest and return to writing later. My body is depleted and will need time to recoup. A hot bath was attempted and even relaxing at the moment, but unfortunately was a let down in the long run. As my muscles, lack of energy, and GP symptoms continued.

Would I do it all over again? Absolutely!!! Without a doubt. 
Yesterday was very special in so many ways and emotionally needed. As a teacher, it was great seeing my students and adding closure to this school year. As a mother, I was able to participate in watching my little girl, become a beautiful young lady, walking out of elementary school to begin a new journey through middle school. I was also able to witness her final game this season. Days like this, memories being made with the kids, are what keep me going. This was a day full of pride and worthy of all my energy. 

Rating on 1-10 scale?
10 for Values of Family and Teaching- Very Special & Memorable day!
2 for Physical Health (As the day progressed, I continued to get weaker and feel worse, no matter how much enjoyment I was finding. I pushed my body to the point of nearly passing out/collapsing, not only once but a couple of times. I didn't care how I was being physically impacted at all - I was all about meeting my other values regardless of the consequences.)

GOD is Wonderful! This summer will make 14 years since I became a mother. Being a mother to 2 wonderful children, has been the most amazing blessing. My stepdaughter making her way into our lives, was an unexpected blessing. I love each of them with all of my heart. They were, still are, and will always be the most important part of my life. They keep me going when times are rough. Seeing their faces, witnessing their compassion, and experiencing their love provides me with strength and comfort when I am ready to give up. I am so very honored that GOD chose ME to be THEIR MOTHER.

I never doubted my ability to be a great mother. From a very young age, I knew that I wanted 2 or 3 kids. Since becoming a mom, I have always done my best to teach them how to love others, how to appreciate the little things, and how to be there for family. They are not given everything they want, they do not always get their way, and they are not always perfect. And that is fine because they are well taken care of, have a supportive family, have everything they need (and more), and are loved beyond measure.

Being a part of this family is not always easy, especially since my illness. The kids have seen me in excruciating pain, over the toilet with relentless nausea, unexpected hospital visits/stays, and too tired to lift my head. Gastroparesis is not well liked by the kids or me. For a while, I fought as hard as I could to be "normal". (Hopefully I can regain my status to the "pretend to me normal" status soon.) After my initial diagnosis and the placing of my feeding tube, I tried to continue being the same type of active mother I had always been: cooking, ball practices/games, backyard practices, vacations, etc. 

This past summer, there were days when I was not physically able to be an active participant in their lives. I was tied down to my recliner with my heating pad. Some vacations they took without me. Deep sea fishing and theme park hopping were not on the list of things that I could do. I physically became unable to practice sports in the backyard, became unable to drive, unable to attend their practices, and sometimes even had to miss a game. Eventually, I began feeling as if I was not a good mother. I felt guilty for everything that I was unable to do as their mother.

With God's help, I have come to the realization that I was so wrong. Gastroparesis and it's symptoms may have changed me as a mother, but it could not and would not define me as a mother. True, I can't do everything as I had before, but I am still a great mother. I love my kids, all 3 of them, unconditionally. I am their number 1 fan and supporter. I am ALWAYS here for them emotionally. I am so very proud of them and all of their accomplishments. God has blessed our family in so many ways. We may not always know why certain things happen, but we accept HIS plan for us.Being sick or physically down, doesn't change that.

I admit, motherhood has altered for me. But hasn't it for everyone. My fears and guilt were senseless. I have not become weak, just different. I continue to teach my children how to become strong and independent adults. I continue to teach my children how to love. I continue to teach them what unconditional love between a mother and child looks like. And I continue to teach them about God's love and blessings.  Coincidentally, the very things that made me feel guilty as a result of my illness, have actually been new lessons for my kids. They are now being taught that everything in life is not always perfect, and that's alright. Deeper conversations replace the backyard playing and practice sessions. They are learning how a family support system works. They are learning to never give up and how to always keep hope alive. They are learning how to advocate for themselves and others. They are learning that God works in mysterious ways. They are learning that prayers are answered in God's time. 

Most importantly, I am their mother and will always be their mother. No illness can ever take that away.  My kids will always have my heart and unconditional love. 

This blog is different from most. It is not about me. It is simply about a victory won in a quest for Gastroparesis Awareness!

Exciting news, for me anyway. Melissa, Becky, and I have been in contact with UNC FGIMD center a few times about needing information about Gastroparesis in the public eye. They listened and have been trying to assist us in our mission. They contacted Dr Koch at Wake Forest to write an article about Gastroparesis. YAY! Last week they published their Spring edition of their DIGEST newsletter online and in print. The article about Gastroparesis is very informative for patients, medical providers, and the general public. They definitely did not disappoint me. To add icing on the cake, some of our links were shared in the additional resources section.

https://www.med.unc.edu/…/professio…/digest/digestspring2015

Why do I blog? Why do I share my personal life to the public? 


I was asked this question today. Why? 
At first I didn't truly know how to respond. 


Anyone that knows me personally, knows that I am usually a very shy and private person. At least I used to be. Living with Gastroparesis has changed me. I have shared time and time again about it's negative impact on my life. There have been a few positive changes as well, though often hidden or overlooked due the horrible symptoms. New friendships has definitely been the brightest silver lining. Blogging has become the most recent. So why?

Blogging came upon me by accident. It began when WEGO Health invited me to partake in a challenge for Health Activist. I agreed to participate and asked my friend to accept the challenge as well. WEGO Health sent us an email with a different prompt for each day of the month. We were to write an entry and then share it on twitter with a #HAWMC. I have to admit that we were surprised when we read some of the prompt ideas. I'm not sure what exactly we were expecting, but we learned very quickly that this challenge was not going to be easy. Some of the prompts were very personal. But you know what? We survived and it was very insightful for me. 

Blogging opened my eyes to a new world. To begin with, I shared on Twitter and also shared some of the articles relating to Gastroparesis in my Support Groups. After receiving positive feedback from the GP community, I was encouraged to continue writing. But it wasn't until I sat down and actually went back to read my own blogs, that I realized the importance of blogging.  I knew that my writing could help others see a different side of me, I never imagined that they helped me see a different side of me. Through my writing, I saw how fragile and bleak my life seems at times while also witnessing my strength, endurance, and faith. While trying to offer hope and inspiration to others living with GP, I was actually inspiring myself. That's when I decided to create my own personal website (blogging) page. I created my blog GastroparesisCrusader.weebly.com to help others understand Gastroparesis while also helping fight for a cure and better treatments. But most importantly, for me. I have found blogging empowering, regardless of the nature or the topic. 


My writing challenge with WEGO has now ended. I am no longer given a daily prompt to write about. So will I stop writing? Absolutely not. 


So back to the question. Why do I blog? 

I blog to educate the public about Gastroparesis. 
I blog to help spread awareness.
I blog to connect with others and hopefully inspire them to keep hope alive.
I blog to allow my family and friends understand my life and what the battles I fight.
I blog to put my emotions in words.
I blog to understand my self.

So the question is, do YOU blog?

Below is the article I wrote for HealthiVibe.com

My name is Trisha and I am sharing my personal story to give you an inside look at what it’s like living with this awful and misunderstood disease: Gastroparesis.

In early February 2013, I became sick with what we thought was a common stomach bug. I was unable to eat or receive an adequate amount of fluids orally. Due to the severe abdominal pain, nausea, vomiting, dehydration, and fatigue, I progressively got weaker. I spent months seeing various doctors and specialists.

On the morning of April 22, my husband was fed up and took me to the nearest university hospital. After seeing that I couldn’t even keep a cracker down, they admitted me for testing and diagnosed me with Gastroparesis. I went home the following week on a liquids-only diet. Unfortunately, I was unable to drink an adequate amount of fluids, became dehydrated, and began having trouble with side effects from one of my medicines. Once again, I had to return to the hospital as an inpatient. It was obvious that I had to receive nutrition; and it was clear that I would not be getting it orally.

In May 2013, I had to resort to having a GJ feeding tube placed. The feeds run for hours directly into the small intestine. Over the past 2 years, not much has changed. I still depend on my feeding tube for nutrition today. I have tried a variety of medicines to manage my continuous symptoms of nausea, abdominal pain, fatigue, dehydration, lightheaded/dizziness, and vitamin deficiencies without much success. The past 6 months have been very difficult for me physically and emotionally since I have had trouble tolerating my feeds and the non-stop symptoms. I feel as if I am in a race for my life.

Fighting an invisible illness like Gastroparesis (GP) is exhausting. Every day is a new day, some better than others. I am blessed and lucky to have a pretty good support team consisting of God, family, and GP friends. My support team is always there for me when I need a quick pick-me-up. They are always trying to keep me in the race when I no longer feel as if I can keep up. I have come to depend on them and expect them to be there for me no matter how small or big of an emotional adjustment is needed.

This past January (2015) I hit an extremely low point in my personal life. I was falling laps behind my counterparts and quickly falling farther and farther behind, drowning in my own sorrows. I was feeling defeated both physically and mentally. I wanted to be able to return to “life” again. I had expected to be strong enough and able to return to teaching, my passion.

Fortunately something unexpected happened. I was invited to join an advocacy group. Really? How could this actually help me? How could I possibly help others when I couldn’t even help myself? Following my heart, and ignoring my doubts, I joined this new group, which we named Gastroparesis: Fighting for Change. We immediately had a vision before us; we were going to teach the public about Gastroparesis.

Thanks to the advocacy group and my new friends, I was ready to face the Gastroparesis race once again. I was tired of sitting on the sidelines. Slowly, but surely, I began to heal emotionally. Becky introduced me to her amazing support group and Melissa gave me the confidence I needed to face my fears and bring awareness to Gastroparesis. Even though physically I am pretty beat-up and my body feels like it’s literally falling to pieces, my spirit has been lifted and is running once again. I am laps behind ordinary people, yes, but I am still in the race, and that’s what matters. That’s what kept me going and continues to keep me going today.

Sharing my personal story has opened my eyes and has allowed me to see myself in a different light. It has ignited a spark that’s empowering. I recently took a moment to step back to reflect on how writing and sharing stories could be helpful, and I realized in that moment that a simple task, like sharing our stories, helps others suffering with Gastroparesis by letting them know that they are not alone. Being an advocate has led me to realize that we are not alone and we are not going to receive better treatment options until we unite and demand to be taken seriously. Gastroparesis is not a stomach ache that comes and goes, but until awareness is brought forth, until the ugly truth about Gastroparesis is told, until people and doctors can comprehend the day-in and day-out struggles of living with Gastroparesis, we will continue to be overlooked and have very limited, ineffective treatment options. We have to stay strong and continue to race with all of our imperfections, scars, and damaged bodies or we will be left out on our own and forgotten.

Advocacy page
 (public)https://www.facebook.com/Gastroparesis.FightingForChange.Page

Support page
 (public)https://www.facebook.com/pages/Gastroparesis-Day-by-Day/455297387941304

Gastroparesis Scoop (newsletter of information, articles, videos, etc all related to Gastroparesis. Information is updated often and can be followed)http://www.scoop.it/t/gastroparesis-by-trisha-high-bundy

Follow me on Twitter @bundytr5

Everyday as I read post on Facebook, read messages on Inspire, read other's blogs, and read "tweets" I am reminded of how many unique, compassionate, and strong people I truly know. The majority of these brave warriors I have never met in person, and most likely never will. However, our connections, our discussions, our prayers, our tears, our frustrations, our support for each other is so much greater and more in-depth than with our other "in-person" friends. It doesn't matter if they have Gastroparesis,  Crohn's , Colitis, or some other chronic digestive disorder, we truly understand each other. And understanding is sometimes all that we desire.

These connections, these friendships, are more meaningful than most even realize. We can truly "see" each other's invisible battles and help each other fight through them. We don't have to hide. We don't have to put on a mask. We don't have to pretend to be feeling well. We don't have to pretend to have control over our condition. We can be "real" again. We can openly share our troubles and gain strength from others while at the same time giving hope to one another. We can be honest about what is bothering us (medically, physically, emotionally, etc) because we know someone is truly listening, someone that can relate. We can cry and laugh together over situations that others can't even imagine. We can share and receive the best possible advice. We can work together to bring awareness publicly.

I never truly grasped this until recently. As a part of our advocacy group (Gastroparesis: Fighting for Change) we started sharing our stories via email, letters, and openly on the internet. (Yes, this frightened me more than anyone will ever know.) I knew it was for a great cause. I admit the public, including medical providers and researchers, needs to be aware of Gastroparesis, so hesitantly I began sharing my story. Now most, especially those that are not affected, are probably sick and tired of reading my post. But that's alright. What I didn't know was how much it would help me and others like me. 

Melissa and her idea of this advocacy group found me at a point when I was in despair. I had begun giving up hope. I was depressed and felt alone in my suffering. I knew my family wanted to understand, they just couldn't. I knew my family wanted to help me, they just couldn't. And knowing how helpless they felt just made me feel more helpless and alone. That's when I was asked to join the newly forming advocacy group, which at that point had no name. I was weary and skeptical, but at that point figured why not?

Now, just a few months later, I see the blessing. I see the rainbow in my darkest storm. God has set me on a path, which I am trying my best to understand and follow. Being a part of the advocacy group led me to sharing my inner most battles with Gastroparesis for anybody in the world to read. At first, there was too much fear for me to grasp. But now, I am enlightened. I am empowered. I am a peace.

Yes, I still have my struggles with Gastroparesis. Yes, I still feel awful. I am nauseous and fatigued to levels that only other GPers can understand. Yes, I hurt. Yes, I still want to eat but instead am struggling to receive adequate nutrition in my feeding tube. But you know what - that's ok! We all have our battles and we will eventually overcome them. I may not have all the answers. I may not like my options. But I can't sit back and drown in misery over the unknowns or the things that are out of my control. I have to do my best to "live", however it may be, until new treatments become available. I will not let Gastroparesis win, and neither should you.

I hear constantly how strong I am and how I am a ray of hope. I hear about how stories like mine and other GP friends have helped inspire others. I have received messages about how reading my story provided strength at a time when they were considering ending their life. I have been told that reading about the faith I have has improved their faith. That if I can still stand strong after what I've been through, then so can they.

You know what? My strength has not come solely from within. I have gained a lot of strength from God. What's ironic is the same people, people surviving with Gastroparesis and other invisible illnesses, are the ones that inspire me. You are the ones who provide me strength with your posts and stories. You are the ones whose struggles, push me to fight even harder for awareness. I am not strong alone. I am just as weak, torn, and frustrated as many of you. But we have to stick together. 

As a team, we are no longer alone! As a team, we can help each other up! As a team, we can fight for a cure! As a team, we can win! 

Quitting is not an option! If you feel weak, reach out and we'll catch you! We will not let you fall. Just reach out, please. 

You're a warrior! Keep up the great fight! 

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