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.

​Video from my friend Melissa VanHouten, urging the medical community and public to listen, hear, and support the GP communities need for awareness, care, and better treatment options.
​It can be shared from the Youtube link.

I am worthy, like everyone else is, for effective healthcare. I have had, and continue to have, experiences with a variety of doctors in different locations and specialties with varied ranges of satisfaction. Some have been dismissive and uncaring, some friendly, compassionate and willing to help, and some have exceptionally gone above and beyond to help me discover improvements and regain a better quality of life. Below are a few of my personal thoughts about healthcare. They are not directed at any one specifically, but coming from concerns and fears that I currently have or have had during my health journey.
​
So how can a healthcare provider demonstrate effective healthcare for me?
What are my expectations?

1) Acknowledge and convey that I am not crazy, my symptoms are not in my head, I am not exaggerating, and what I experience is real! Unless you have seen me during the extreme symptomatic times or personally experienced the pain and nausea on a daily basis every time YOU try to eat or drink something by mouth, do NOT judge or patronize me. 

2) Treat me as an individual PERSON, not as a textbook example or just a case to deal with. Listen, truly listen, and hear what I am saying. Imagine yourself in my shoes. Respect that I know my body better than anyone else. If you respect me and understand my medical narrative, then I can better trust you and your suggestions. If you don't know how to best explain or understand my issue, please be honest with me. I'd rather know that you're unsure but willing to "think outside of the box", talk to colleagues, or conduct more research to learn alongside me, than be brushed off, ridiculed, or given up on. When you walk out the door, you may be able to put the paperwork aside and not think about it again. Unlike you, I have to deal and LIVE my life, with symptoms, every day. I can't close the door and forget what's ailing me. It's encouraging when I know I have a doctor that is dependable and invested in actually helping me when the time arises, even if they don't have all of the answers all of the time.

3) If labs come back abnormal and need immediate attention, please contact me. Don't make my primary or I jump hurdles or go on a scavenger hunt to find information that was needed as soon as possible. For example: Positive lab cultures for a central line and/or blood infection should be relayed to us immediately, not held on to for a week or more. I shouldn't have to keep asking over and over just to receive a copy of my own culture and lab results, ESPECIALLY if they were positive for an infection.

4) I'm aware of my risks! I do not take my health lightly. So, please value my needs and wants for an improved quality of life. In just this past year, our online support group lost more than 53 lives due to health complications including suicide, malnutrition, sepsis, and organ failure. Too many were dismissed or not listened to when they reached out for help from their personal doctors or were unable to find a doctor willing to take the time to help them because they were considered too complex! Friends that went to the ER for fluids because they were dehydrated, were mocked, judged, and blamed from the doctors and nurses that were suppose to take care of them. Some were even sent away with no help or answers, only to end with confusion, uncertainty, and unfortunately, even devastating outcomes. I realize the negative impact that chronic illness can have on all aspects of one's life, including dangerous risks and complications. So please respect my knowledge and help me understand what is the best possible treatment plan for me when taking EVERYTHING into consideration. I realize how important it is to have a medical team that communicates well. Yes, I may come with some fears or be hesitant at times, but I'm not being uncooperative, instead just being cautious because of similar past experiences that I or my friends have been through. In order for me to gain confidence or comfort in the treatment plan we discuss, I may need to ask questions, share concerns, or simply have time to think about it.

​5) I respect that doctors have their own colleagues that they know and work alongside. I don't mind a doctor asking me or sharing information with me in the case that I may be interested in meeting or working with one of them. I promise that I will always listen to recommendations, along with reasoning, and consider my options, including doing my own research if necessary, before making a decision. In the case that I don't feel like it's the best choice for me at the time, if something changes, I will once again reconsider my options and the recommendation. Just give me the same respect if I share how I already have someone in that profession that I have developed a trusting bond with. One whom works extremely well with me, understands and has witnessed my health scenarios, helped me handle them for numerous years, and is an essential member of my health team. Trust me, finding caring trust-worthy doctors is not easy. Starting over with new doctors that are not familiar with where I've been, what I've experienced, the progress made, or the struggles that I still face with my health day after day for 5 years come February, is stressful and intimidating. I shouldn't have to keep being put on the spot to "prove" what I deal with. I deserve to have a medical team that knows me and understands me, that I feel comfortable with, and that I can have open, honest, and trustworthy communication with.

6) Do I want to roll a pole around all day with IV hydration or carry around my tube feeds all day? NO!  They honestly can be a pain in the ASS some days! However, I am aware that they help me. They are keeping me stable, allowing me to function better at home, get out of the house for a few minutes with family on some days, and keep me from wobbling around in dizzy weak lightheaded spells. More than many may realize, I'd love to be able to eat or drink an adequate amount to meet my nutritional and hydrational needs. I'd love to be "normal" or even semi-normal again. But my body isn't there and likely never will be. I'm not dealing with a simple stomach bug! Saying that we're going to get more fluids in and remove the central line sounds easy enough in theory and looks great on paper. I understand that you are concerned. Even though it may not be true, when dealing with the consequences of minor attempts causing so much distress, it SOUNDS like I'm being told that I'm going to be stranded, left in a dehydrated state, and have to return to ER visits on a regular basis for fluid intervention. It SOUNDS like, I'm not being believed, that I don't know my body, that it's ok if I'm stuck at home lying on the couch like a lifeless log. It SOUNDS like my concerns and fears are not being heard. Will I try to follow my doctors' ideas and suggestions? Absolutely. I will continue to keep pushing limits and dealing with the painful nauseating consequences again and again, even if I'm already trying. Nonetheless, it is terrifying to consider that my fluids may be taken away and I'll have to return to the hell I faced prior to receiving them and when I attempted ceasing them during treatment with my prior GI. Yes, I get it, the medications are different and still being adjusted. Maybe, something will improve. We won't know unless we keep trying.  I admit all of that may be true; The new medications may eventually help me improve my nutritional input with less severity in symptoms. What appears to be missing is that I DO TRY ALL THE TIME, which I vow to continue doing, and I STILL STRUGGLE with symptoms. The thought of being stranded and dehydrated or being forced to hesitate on a regular basis if the ER is necessary is terrifying. I hear you when you say that we will do it gradually, and appreciate that. Slowly decreasing fluids will be more helpful than a drastic halt. But, please hear me when I say that almost feels like a self-punishment, even when I AM keenly aware that it is being done with the best intentions and in an attempt to decrease my chance of a life-threatening infection.

​7) Remember, I am me! My body works based on my health, my organs, my muscles, etc. I live with my body 24/7 while you may only see me for about 30-45 minutes every 3-4 months. There is no need to compare me to other people, especially ones with other illnesses. It is not reassuring. They are not me and I am not them.  We are all individuals. The way my body reacts to treatment plans may not be as effective as it is for others. Similarly, certain treatments may work better or help me more than they help someone else. I've learned that treating my illness takes a lot of trial and error attempts and I can't help but become leery of changing something that is notably helping me. Saying that, a doctor can help me understand their point of view and/or reasoning by taking the time to explain exactly how the newest treatment plan(s) we discuss will be more reasonable than the current one for MY health, now and in the future.

8) Realize that ALIVE and LIVING are 2 different things: 
If it takes feeling unbearably awful to stay home pushing fluids in an uncooperative GI system, without help from IV fluids, just to stay alive, what's the point? If I become more miserable every day, and am literally just here surviving in discomfort, hope is lost, and the desire to be around decreases. If I must take risks to have some relief and energy, so I can actually LIVE with my family, go to the store with them, interact and help them around the house, attend church on some Sundays, etc.. is it not worth it? IV hydration has definitely helped me become more balanced. Being hydrated gives me a reason to keep striving forward with some hope that tomorrow or the next day may be a decent day to enjoy with my family, while also providing me time and limited energy, but energy nonetheless, to create family memories that help me face the consequences after or during the awful symptomatic times. At times I may choose to place emphasis on Quality of Life over Quantity of Life or vice versa. To be quite frank, if Quality of Life diminishes to levels that are hard to recognize or accept, that's when people are more likely to give up on life itself. That's when health seems to take a nose dive, hope disappears, and suicidal thoughts or worse become more pronounced. This is what I want to AVOID at all costs! However, I also don't want to take unnecessary risks for things that may be avoidable, such as infections or blood clots. It's a difficult line to draw in either direction. So PLEASE be PATIENT with me when situations like this occur, whether it's regarding IV fluids, tube feeds, new medications, side effects from medications, surgical interventions, etc. I am not being difficult! I may just need some time to adjust to the idea or figure out my personal comfort level. 

9) While I need and want my health providers, regardless of specialty or level, to be comforting and encouraging while providing me with effective medical care, I don't want to be plagued with false hope. My hope has been crushed too many times and I now feel compelled to try and remain neutral. I try not to let my hope build too much, as I don't want to set my family or myself up for more disappointments or failures. I need realistic expectations and goals more than overly optimistic hope. I'd much rather be pleasantly surprised with unexpected positive results once in awhile, than repeatedly discouraged or hurt by expected improvements that do not occur and possibly may never be obtained. 

10) Being friendly, smiling, and laughing are part of my character, even when I feel awful. These characteristics help me cope with feeling miserable. It is also my way of trying to comfort my family, especially my kids, so they do not worry about me. When you get to know me better, you will likely catch me trying to put on the "brave mask" as a way of protecting myself. I do not intentionally downplay my symptoms, but have been told that I do so quite often. For this hurdle, I apologize. However, if you actually listen to what my family and I describe, watch my body language, and try to relate, you will likely be able to tell the difference between my "coping positivity" and my genuine feelings. Eventually, with time and after trust is gained, I will feel more comfortable and become better able to be authentically vocalize my reality.

In short, effective healthcare is seeing me as an individual PERSON, treating me with respect and empathy, providing me with honest medical care and knowledge of the positives and negatives regarding my health and treatment options, while also developing a relationship built on open communication. Together, my healthcare team and I can determine what the best course of action is for my personal health circumstances. When effective healthcare is provided, a healthier future can be made possible. And isn't that the ultimate goal? 

January 7, 2018
Wow! 

2 years ago today, I made one of my most challenging and risky health decisions. I had my colon removed and an Ileostomy placed. It almost seems unreal that it has already been that long, as the memory of my struggles with colonic inertia prior to surgery are still very clear. In no way do I miss the hours of squirming around on the bathroom floor in extreme excruciating pain, the myriad of numerous laxatives needed every single day, or the tortuous hell of impactions and fissures.

I know that I still face health obstacles daily, but, can honestly say, that after the recovery period,
I have ABSOLUTELY NO REGRETS!

In fact, I credit and genuinely respect my favorite GI for truly listening to my complaints, being concerned about my quality of life,  and helping me discover the reasons as well as a solution for at least some of my complex and troubling issues. I also appreciate him for referring me to a wonderful surgeon, whom after listening to my concerns, conducted other tests (defecography and a second anorectal manometry) to determine if a reattachment would be applicable or if an ileostomy would be required. I firmly believe that we made the best choice for my specific situation.
I am able to accept our decision (and my ileostomy) because we confirmed my pelvic floor dyssynergia would likely prevent a reattachment from being successful. In addition, my psychologist helped me prepare mentally and emotionally for the surgery and recovery, which was extremely beneficial.

Yea, I'm the first to admit, my body is definitely not ideal. I still deal with GP symptoms of nausea, fatigue, and pain on a daily basis at varying degrees of severity. My body and health are still teaching me all kinds of new knowledge and experiences, many of which would have been nice to have been able to skip.
​
I still depend on tube feeds and IV hydration to keep me nutritionally stabilized, work with medical doctors to help improve my physical health, team up with my psychologist to maintain my emotional health, and continue to put my trust in GOD to stay positive spiritually.

I can't deny that there are times I get frustrated and irritated with my health. Sometimes, I get upset and feel like I’m becoming a misfit machine, wondering if I'll ever get better. However, when all is said and done, I am so thankful and blessed for the support I have around me and the medical interventions (regardless of how annoying they can be) that keep me here with my family.

Days are not perfect, some far from, but there are still many marvelous moments to cherish! So.........
​
​                                      HAPPY 2nd ANNIVERSARY "ILEO" !!! 

​I acknowledge and welcome the improvements that you have made in my life.
Because of you, the misery of waste removal has been eliminated.
Because of you, endless hours spent crying in the bathroom are now spent sitting with family.
Because of you, I've reduced the amount of medications entering my body.
Most importantly, because of you, I've regained a few enhancements in my quality of life.

Giving my all,
trying to find peace and grace within myself,
searching for a better sense of my identity,
striving to portray myself authentically
while being true to my desires for life. 

Giving my all, 
discovering ways to feel useful,
pursuing ways to grow spiritually, 
using experiences to strengthen relationships,
while hopefully providing comfort and support to others.

Giving my all, 
seeking ways to physically feel better,
scrutinizing possible reasons for recent deterioration,
reaching out for medical help despite reservations, 
while attempting to trust all medical advice given.

Giving my all, 
writhing from unexplanable relentless pain,
shivering and shaking from unyielding chills,
crying out for something, anything, to make it stop,
while praying that answers and relief would soon come.

Giving my all,
soliciting answers for the cause of my symptoms,
patiently suffering in agonizing pain,
heaving and vomiting with head pounding,
while no one seemed to have a solution.

Giving my all, 
confiding health concerns with my primary,
wishing he could offer much needed assistance,
graciously accepting his opinions and suggestions,
while struggling to keep myself together without complaining.

Giving my all,
requesting records and cultures from an ED visit,
making every effort possible to get copies to my primary,
venturing out to get my hand on the actual results,
while frustrated over the ED's lack of concern. 

Giving my all,
secretly hiding my fears from family,
relying on my primary to finally find some relief,
following his orders to visit yet another ED,
while completely feeling drained and depleted.

Giving my all, 
preparing best as possible for a hospital admission,
talking with my respected and reliable confidant,
gaining control of my emotions and angst,
while knowing I was about to be under the care of unfamiliar doctors.

Giving my all,
surrendering myself to their needles and tactics,
relinquishing control to them and their treatments,
repeating my health story again and again,
while gaining confidence that the worst was finally going to be over.

Giving my all,
appreciating the doctors and nurses willing to help, 
acknowledging the blessing my primary has been,
recognizing the importance of reaching out for his support,
while gladly welcoming an end to my bacteremia chaos.

---------------------------
Not sure what I would have done if it had not been for my primary stepping in and guiding me in the right direction. I knew something was not right with my body, feared that it could be an infection in my PORT or bloodstream, but couldn't get any answers or relief. After three separate ED visits, all within a couple of days span, I felt like I must be going crazy. I started doubting how much longer I could handle or deal with these horrifying symptoms. However, my primary communicated with me, believed my agony, knew that I typically avoid emergency departments at all costs, agreed something was definitely going on, predicted it could possibly be a bacteremia infection, remained persistent on seeing actual culture results himself, discovered I had klebsiella  pneumonea infection in my PORT and bloodstream from the most recent ED visit's cultures, informed and prepared his ED team of doctors for my arrival, and ultimately ended this tormenting experience. My PORT had to be removed, a PICC line placed, and IV antibiotics for days during my hospitalization, but, I was so thankful! The medical team that took care of me was great and a new sense of comfort was discovered. Now I am aware that I do indeed have a primary that I can depend on. 

Moral of this experience:
Trust your body! You know yourself better than anyone else. You shouldn't be afraid to reach out to your doctors in times of need. If you are not improving, don't try to sit back and ignore. Listen to what your body is saying and take action. It can literally be the difference between life and death sometimes. Luckily, the infection I had was treatable and not resistant to antibiotics. If it had continued to go untreated, it would have likely increased in severity, leading to possible sepsis. Sepsis can lead to organ failure and even death. A reminder of just how important and essential it is to have a doctor that you can trust and communicate with. Having a doctor that's invested in what's in your best interests is a valuable asset never to be taken for granted.

​

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! 

Maybe, it's the heart of an athlete and sports enthusiast within me. Maybe it's the idea of competition, teamwork, and give all you have mentality. Maybe it's a mysterious internal motivating factor. I don't know. What I do know is that living with chronic illness can be challenging in all facets of life. 

In the chronic illness community, one often hears about the war that our bodies are fighting. Messages of how to remain strong, courageous, and brave as we fight each battle, some worse than others. You may be a "spoonie" or managing with an insignificant "battery", but you are a warrior. Things may be difficult or seem impossible, but if you keep fighting hard enough you can overcome. You just have to be strong and keep persevering. Or at least that's the way it sounds, right? Is that the impression that these comments are meant to give?

The problem is, that while the above sounds positive and optomistic, it can also be perceived as damaging. When symptoms and illness have your health and spirit spiraling, even plummeting, I believe it's only natural to begin doubting your strength and reserves. Are the most challenging moments a result of not trying hard enough, are you too weak, not resilient enough? Are you hindered from improved health because you are too broken to be repaired, not significant enough, or simply just a failure? 

I know for a fact that that is NOT the case. We are all destined to move forward in life, all of us. Healthy or not, we will all eventually exhaust our time on Earth at one time or another. For those with chronic illness, some will learn to cope or deal with their illness and it's impact on their life better than others. Some will suffer more either physically, emotionally, or mentally. Some will masks their inner most feelings. Some will pretend or attempt to forget what they are dealing with. Others will try to overachieve with the goal of covering up or hiding the impact that illness has on their lives.

My question is, does our outlook always have to be compared to a win/lose scenario? I know that some of the most beautiful-souls, faithful, caring, and determined people I know have already left our earthly home. It was not because they were weak or didn't try. It was not because they "lost" the war. For whatever reason, it was just their time.

On the same notion, I am aware that some people give all that they can give and times just become too difficult for them to handle.  Sadly, some have chosen to take their own lives in hopes of ending the suffering and pain that tormented them day after day. But was it because they were cowards or not strong enough? I don't think so.  Instead, I think sometimes, regardless of whether it's accurate or not, people act in the moment out of desperation for a break from their reality, over possible guilt for burdening their loved ones, or loneliness from feeling isolated and withdrawn from society. Being sick all of the time can definitely weigh heavily on one's heart, soul, and perception of life. But, it does not mean that they were selfish or gave up. Is it possible that a different vantage point, an empathetic ear to talk to, a network of supportive loved ones and doctors, or clearer and more reasonable expectations (set by themselves or others) could help some remain hopeful during the most dreadful of days?

The fact is no one knows exactly what someone else is going through. Hell, sometimes the person themselves don't even know. Being told to stay strong when someone is struggling, or to keep fighting while they're trying their absolute hardest, may help some hold on. It may give them a little encouragement. However, it may unintentionally hurt others, making them contemplate their own personal characteristics and how they measure up. (One just has to be mindful of how their comments may be interpreted.)

I'm not gonna lie, my health and thoughts have taken me to some really dark and scary places. I have tried to remain strong, tried to be a faithful warrior, looked at health battles as either wins or losses. I have at times felt shameful, guilty, and weak. At those times, it was hard to look forward to the next day. It was difficult to comprehend how I could keep fighting so hard, with all I had in me. I saw myself as undeserving or inadequate. In some ways I felt like throwing in the towel or giving up, if for nothing else than to protect my family from being impacted or limited by my illness and continued shortcomings. At those moments, I could care less if I was being brave or strong. I felt feeble and powerless. I kept asking myself, what could I do to try harder or be stronger? How could I regain control of my body? What was I not doing well enough? Why was I failing at improving?

Did I have to look at it from that angle, with the idea of constantly winning or losing a battle or war? Is it really an all or nothing situation? Is being brave or courageous in the eyes of others, going to remove fear or uncertainties? Does questioning your future health and worth, mean that you are a coward or quitter? I don't think that has to be the case, at least not in my present state of mind.

The chaos of life is just that - LIFE! 

So if not a warrior fighting in a chronic illness war, then what is it? How can we explain this thing called life? How can we describe it or compare it to something similar that is not so cut and dry between two different ends of the spectrum?

What can help ME accept the good and bad that comes with living day in and day out with illness? How can I view my life in a way that is inclusive for all of the wonderful and positive things in life, while also eliminating the severity of negativity during the most challenging times?

In the past I have sometimes compared my health journey to a road trip or roller coaster, with all of the ups, downs, twist and turns. Full of laughter and thrills, but also uncertainties of what is yet to come. I have viewed myself as a crusader, striving for God's purpose, regardless of what trials I'm faced with. (Yes, I realize that crusaders fall into the "war-like" thinking, but not in my context.) I have also compared life to weather, with periods of storms followed by rainbows.

While these metaphors can be useful, I just don't seem to think that they always do justice in describing the experiences I live. Road trips, roller coasters, and the weather all have something in common; They often underestimate the influence that events, other people, and prior experiences have on my life as a whole. They often remove the element of control that I have. A road trip may end at a designated destination, a roller coaster would drop me off in the exact same place that I began, and the weather, well it's just a continuous cycle without a desired outcome.

I want to challenge myself to be able to view all of life's rewards while avoiding seeing the negatives and struggles as losses. Instead, my goal is to look at the tough times as events that help me gain new knowledge, experience, and growth. I want to be able to describe my health journey in way that respects everything and everyone that has already, is currently, and will eventually help me arrive at my ultimate destination - a mother striving for internal and spiritual growth with a meaningful purpose.

 A positive attitude is essential in managing life and all of its' changes, including ones that are unexpected and appear to be undesirable. It's important to remind yourself that even if you are saddened, worried, or angry about an unexpected change, the final result may not be completely negative. Just because it feels extremely negative at the time, it will not necessarily stay that way. Sometimes, what seems like a problem, or even a disaster, could actually be a blessing in disguise. A negative event may help strengthen your ambition, motivation, faith, and emotional strength when all is said and done. The change may help improve the relationships that you have with family, friends, God, or even yourself. Eventually, the change can make you realize how strong and resilient you really are. Changes can help you reevaluate your priorities in life. They may also lead to new experiences, personal progress and success, new connections. The occurring change may not be easy to begin with, may even feel like a let down or leap in the wrong direction. However, in the long run it may help you make a difference in someone else's life or set things in motion to make you healthier or happier. Saying that, sometimes these unexpected changes surprise us. And yes, undoubtedly they may increase fear, heartache, and pain which are all signs that you are ALIVE! Emotions may go haywire - but isn't FEELING something better than feeling nothing? Trust me, I know that it may seem like life’s out to get you, simply because all you might be able to see is the bad, the worst case scenarios, the despair; but try to hold on to the possibility that eventually some silver linings will pop up. Heck, these unexpected changes may actually end up doing more good than harm in the long run.

At least that's what I'm TRYING to tell myself, trying to convince myself of this time. I can't say that I'm successfully achieving this thought pattern at the current moment, but I am TRYING. And well, sometimes that's all that we can do. Hold on tight and try to remain optimistic.

​In the midst of changes, current and upcoming, what can I do to actually better prepare myself? What plan can I put in place to make changes and transitions more tolerable?

​1. Focus on doing better at living in the moment. Don't make any long-term plans or let my mind drift too far down the road of uncertainties and fears. The worries may be all for nothing. If I cannot control the actual change from occurring or the outcome, why waste energy on what-ifs that may or may not be an issue? Instead I should consider what I do have control over.
​
Sounds great, right? I mean, it makes sense, would be logical, but is definitely challenging. I admit that I have quite a lot of room for improvement with this thinking process, especially when considering the changes I'm facing in regards to my medical team!

​So, how do I apply this advice in my current situation? I'm aware that I'm unable to change the fact that I have to deal with a new home nurse and in a couple of months, a new GI. (Both of whom have been an essential part of my medical team. Both of whom have helped me manage my health, understood my issues, and respectfully and empathetically communicated with me.)

​- I need to attempt to resist fighting my response and emotions. There is nothing wrong with voicing my fears, sadness, anger, frustration as long as I allow myself to express the emotions in a healthy way and then take a breath and continue forward in the best way possible.

​- I need to assess the situation by gathering pertinent information and evaluating what specific actions I should take to make the transition even smoother. For example:
​      a) writing a letter expressing my appreciation to help find closure,
      b) filling prescriptions prior to insurance and physician change,
​      c) contact GI early about medicines I need his assistance with to receive insurance coverage,
​      d) write a list of questions/concerns to discuss with my current GI before he moves
​      e) attend free online webinars to be better prepared for doctor's appointment
      f) meet new GI at final current GI appt to possible help ease the transition
​           
- I need to take a stand for myself by determining what is necessary for me to receive appropriate care, be willing to share (yikes) important information,  and be confident that I know myself and am able to advocate for myself better than anyone else.

​- I need to stay open-minded, yet still remain cautious, until I get a good feel on how the new members of my medical team meet my healthcare needs. Reminding myself, that they will likely not be as awesome as the dream team I had, but that doesn't mean that they will be awful. Just need to give them a chance and then reevaluate if I believe that they can at least be adequate enough.

​- I need to hold on to faith that God is in control and will help me navigate these troubled waters.

​_ I need to maintain hope that my current GI will continue to look out for my best interests by choosing who will be in charge of my care when he leaves and by effectively educating my new GI about my medical issues.

3. If all else fails, or if I'm not comfortable with any member of my medical team after giving them a fair opportunity, then I need to remember that I always have an alternative plan available. If my new doctor or home nurse does not meet my acceptable expectations, I will begin to search for a different new doctor and/or nurse. (Without a doubt, I do NOT want to end up having to implement this plan.)

What other choices do I have?

With admiration and appreciation, I thank all of the phenomenal doctors that have been a part of my medical team. Inpatient or outpatient, doctors in all areas and specialties have the ability to make a lasting difference and impression in my life as a patient. The experiences that I've had, good and bad, have made me more aware of what I expect, need, desire, and appreciate from my medical providers.

​Today, I want to personally and publically thank some of the most incredible doctors that I have worked with along my medical journey. Even though I would like to share their actual names, respecting their privacy is more important.

​Dear Dr Spectacular,

Thank you for being my doctor
​Over the years, you've learned who I am.
My health journey has been better, with you being a part of it.
​I appreciate your trust and perseverance.
​Through your actions and encouragement, you've kept me from giving up.

Thank you for being by my side,
​Calling me out, when you knew I was downplaying my situation or symptoms.
​Thank you for choosing to listen with caring and compassionate attentiveness,
​For questioning me and having open dialogue to gain more clarity,
For communicating with my family and other medical providers when necessary.

Thank you for being REAL, empathetic, cautious and never intimidating,
For your honesty and for the mutual respect we've shared.
​Thank you for helping me to remain optimistic, especially when my health is most challenging,
​And for your willingness to keep searching for the most effective treatment plan.
​
Thank you for taking time during our appointments, never making me feel rushed,
​And for seeing me as a person, not just as a patient case.
Thank you for always being prepared, with alternate back up plans available and ready.
​Thank you for understanding ME, remembering previous encounters, & not just following my chart.

Thank you for encouraging me to communicate between appointments,
​And for quickly responding to my updates and questions, even if I was unsure about sharing. 
Thank you for taking me seriously, not writing me off or blaming me when an easy solution was nowhere to be found.
​Thank you for ensuring that I've always felt safe, respected, and heard when under your care.
​
Thank you for taking the risks to invest your time and attention to my health needs,
For tolerating my silence, shortcomings, and attempts to avoid "bothering" you.
​Thank you for the countless times you've reassured me that I was never a bother,
For your confidence, kindness, knowledge, curiosity, and eagerness to assist me.
Thank you for having the ability to see through me to the reality of my health's impact on daily life.

​With the utmost gratitude, I express my appreciation for you.
​I thank you for the positive impact you have made in my life,
​For always being patient with me, while also looking out for my best interests.
We may not have all of the answers or solutions, but
I thank you immensely for the improvements we have accomplished.

Thank you for being a spectacular doctor!

August of this year is now behind us, which has been known, unofficially, in the Gastroparesis community as Gastroparesis month. This year, no cure was found and we as a community are still struggling with finding effective treatments, but not all was lost. The Gastroparesis community actually has some reasons to celebrate!



- AUGUST IS NOW OFFICIALLY ON THE NATIONAL HEALTH CALENDAR NOW!!!! Yahoo! This is outstanding news as now more people will become aware of what Gastroparesis is and hopefully it will help with the push for more research. We no longer have to request state proclamations to verify that our disease needs awareness or verify our cause. Much appreciation to IFFGD (International Foundation for Functional GI Disorders) for assisting in making this possible.

​- Prior to be on the National Calendar our Gastroparesis: Fighting for Change group had various members across the nation volunteer to request individual state proclamations. Yes, we were successful this year. We received state proclamations in approximately 1/2 of the US - some were for GP Awareness Weeks, others for GP Awareness Month. How exciting is that! Yes, my home state was one that was granted.

​- Miracles From Heaven - the movie - became available on DVD! What a great movie about Functional GI Motility Disorders, family, and faith. If you have not seen it yet, I would HIGHLY SUGGEST it! It is basically about a young girl that unexpectedly becomes very sick with Pseudo-obstruction (Her intestines were not functioning properly) and Gastroparesis (though it's not actually named in the movie, just briefly mentioned, the book and interviews have said that this was also a part of her health problem. (Gastroparesis is when the stomach is essentially partially or completely paralyzed and doesn't empty properly.) The movie doesn't fully describe the length of time that her illness lasted, but does a nice job relaying the pain and frustration we go through to receive proper medical care and the importance of support from family, friends, and faith. I can't honestly speak for everyone about how similar or accurate the symptoms are portrayed, as there is a vast spectrum of severity. I can say that I could relate very well to parts of this movie, but most importantly, to the pubic eye, especially the one's that don't live with GP or FGIMDs, it is eye-opening and an opportunity to build the discussion.

​- In the online GP community that I'm a member of, we have had many members have success at getting some awareness out locally in their own cities and states. Some have had movie days (watched Miracles from Heaven with family/friends or even church groups, some individuals have spoken and/or participated in medical conferences, others have created and shared awareness videos, some have been interviewed by local news (print, TV, and/or radio) to share their story and GP related facts, others have held meet-in-greets with other GPers that live near them. Additionally some members of our GP community have written and shared information in blogs, posted awareness meme's and facts on FB for their non-GP friends and family to read, and participated  in events such as the #TAKEABITE4GP campaign and/or #Green4GP on various social media platforms. (TakeABite4GP is a campaign that a couple of our members began. The idea is to have people post pictures of themselves taking a bite for those of us that can't, to support of the GP community.) I must admit, is was great seeing so many non-GPers from all around the world share support for the GP community by sharing articles, pictures, comments, and more. A couple of GP friends and I were even nominated for the WEGO Health Activist Awards in one or more categories each.  Even if none of us actually "win" being nominated is a "win" in and of itself as it helps us gain more awareness for Gastroparesis.

​- On the Twitter front, it's nice to see more and more medical institutions, medical providers, even research centers sharing more information about the need for Gastroparesis awareness, research, and more effective treatment options.

​- The Gastroparesis and Functional GI Motility Disorder communities are still trying to persuade Congress to approve #HR2311. This bill would help increase awareness, funding, and research for these illnesses, eventually leading to more health care provider being familiar with our illnesses, better treatment options, and possible one day a cure. We  have had a few more Congressional Members co-sponsor the bill but we need more. Please help join us by emailing, calling, writing a letter, visiting, or even just signing our petition for support at https://buildquorum.com/actions/1996 ​

Disclaimer:
This list in not all-inclusive There are various other facts and experiences that I chose not to share today. The statements below are based on what I have encountered during my personal health journey. Other patients may have stories that are similar, less dramatic, more severe, or completely different than mine.

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."​

Goals:
Perception
​Recognize/Focus on "progress" or what's going right each day
​Don't let negative setbacks drown or mask progress even if powerful
Celebrate progress of small wins, no matter how trivial to keep momentum
​Growth Mindset instead of Fixed Mindset
​             Example: Instead of "Plan A didn't work" think "At least the alphabet has 26 letters")

​POSITIVE ATTITUDE ATTRIBUTES
- Motivation
- Optimistic about the future
- Helping attitude
- Proud of accomplishments
- Positive body language
- Can DO mentality
- Reflecting Self confidence
- Calm and positive reaction to criticisms
- Converting challenges to opportunities

To the outward eye, those who are not around me daily may think that I choose to avoid certain activities because I am depressed. I honestly do not feel like that is the case, at least not all of the time. There may be moments or days that are depressing, but I do not believe that I am experiencing severe or continuous depression.  Yes, I am exhausted mentally and physically. Yes, I am sleeping more, not functioning as well as I'd like, and not participating in activities or going out of the house as much as I'd like. Yes I am frustrated and at times overwhelmed. Yes I admit that there are times that I get "down".  The fact of the matter is - I WANT to do things, I DESIRE to do things, I FIND PLEASURE spending time with my family, and I ENJOY life. I like watching movies, though at home is my preference now, and find myself smiling and laughing. None of that has changed. I just DESPISE how my body feels afterwards (and sometimes during). The energy and strength is just not present the way that I need it to be, even for simple everyday task. It's not that I'm sad. It's not that I want to stay home. My body just completely shuts down on me, and yes, I hate that. Contrary to what some may think, I do not sit around during the day crying over what I can't do. My focus is not on my limitations. Instead, I usually take things in stride - go with the flow - and try to listen to what my body tells me. There are times that I actually rebel against my body and do things that I want to do, regardless of how my body will react or what consequences may follow. Yes, I often regret those decisions, at least partially. Yet, I also see the value and pleasure - even if short-lived- in the choices I make.

My family and those closest to me recognize the "real" me most of the time. (Even if I do try to hide my symptoms.) They see my heart, my drive, my Faith, and my positivity. My health may be compromised, but my love for others shines through effortlessly. Sometimes I have to strive harder to demonstrate what I think positivity should "look" like. Deep down, I want to appear positive and happy, I want to appear like I have everything under control. I want to appear as though I have no worries or concerns. I believe that this is my way of protecting the ones I love from seeing the reality of uncertainty and pain of continued sickness. I call this being "fake" at times, though in all honesty it's not completely the truth. My intentions are not fake, they come from a place of love, trust, and yes - even inner positivity. So while I may put on a mask to hide how I feel physically or mentally at the moment, the mask is not completely a lie all of the time. Many times it is a reflection of my inner heart and soul that's being hidden or held hostage by the fatigue, nausea, pain, or concerns. For example, smiling when I feel my absolute worst or when I feel like I can no longer go on. The smile may be "forced" or may even occur naturally, yet it's still created by the love, comfort, or peace that I feel for being around whoever it is - whether it's a family member or even a doctor. A smile doesn't necessarily have to mean that I am completely happy or feeling great. A smile from me can also represent that I'm still human, that I enjoy your company, or even that I trust in the care being provided. A smile can mean that I treasure someone so much that I don't want them to worry or even though frustrated and feeling awful, that a part of me is still alive and wants my medical team to see me as a person and actually like me enough to give their all to help me feel better. It's easier to help a kind person with a smile. In addition, smiles are contagious, so smiling (even if it is  a pretend one or a front) helps others around me smile, which is undoubtedly a nice "pick-me-up" when I'm not feeling well.

​I'm beginning to understand and recognize that being positive doesn't mean that I am never sad, upset, mad, doubting, scared, or unsure. I can experience all of these emotions and more and still be authentically positive. Positivity can be witnessed by smiling when in despair, hopeful in the future, or a hug when falling apart. Also positivity can simply be portraying gratitude to loved ones that are near and expressing appreciation for those that help me along the way. It's having Faith that God will pull me through, the strength to just hold on for just one more day (or even hour if needed) until things calm, and acknowledging all of the miracles and beauty surrounding me every single day. Positivity is never giving up even when everything else in my body tells me otherwise and believing that everything will fall into place one day - just as God intends it to. There may be numerous things going wrong, but there are always just as many things going right. I just have to remind myself to take a moment to breathe and guide my mind to focus on the things that are great in my life.

Positivity is internalizing that even when the battles are rough and the war within my body seems relentless and never-ending, that I am still blessed beyond measure - surrounded by an almighty God, loving family, compassionate friends, and a caring medical team.

Anyone that knows me, knows that I have a difficult time determining when symptoms increase to the point that I need to make a special point to contact and inform my home nurse and/or doctor. It's easy for someone else, like family members and friends, to suggest placing a call or sending an email when symptoms have progressed. However, for those living with chronic illnesses, it's not so easy. We deal with symptoms every single day so it becomes a trivial matter. I don't know about others, but for me, I begin second guessing whether or not the symptoms are important enough to ask for medical help or advice. My fear is that I will begin to sound like a whiner, hypochondriac, or nuisance over "minor" things which will make it difficult for others to believe me when something serious is happening. This mentality, though it has great intentions, can be extremely risky for me. There have been numerous occasions where I attempted to "tough it out" too long, resulting in dangerous consequences. It's difficult determining where to draw the line, when does survival actually become denial.

​You see, the past couple of weeks my energy and strength has been more depleted than normal. I have been battling increased nausea, frequent lightheaded spells, sporadic discomfort around my PORT, moments of low grade temperatures, and occasional spurts of tachycardia. None of these symptoms are completely uncommon or new for me, so even though my family had been urging me to talk with my medical team, I didn't see the need. I mean, what could they actually say or do that would help? It's not like I was in continuous debilitating pain or completely unable to survive. I was trying to take the harsh moments in stride and hold on until calmer moments returned. I can't possibly reach out to my medical team every time I am feeling rotten. I have to learn to live with pain, discomfort, nausea, and fatigue as in some degree they have become "my normal."

Eventually, after days of persuasion, I did break down and call my Home Health nurse to let him know about the off and on again discomfort around my site. I told him that my family was concerned, though I felt like I was alright. I answered a few questions that he had and felt comfortable knowing that he would be out on Friday to de-access my PORT for the weekend. Since all my vitals appeared fine and I was not in any discomfort at the time, we decided that we would monitor the situation over the weekend. During the weekend, I began having more spells of chills and low grade fevers, with my exhaustion levels rising. When Home Health came out on Monday to access my PORT, I was still experiencing chills. Being cold is not uncommon for me, but apparently wearing my favorite sweatpants and sweatshirt while wrapped in a heavy comforter during the summer while everyone else in my house is shirtless or in tank tops is considered odd. Go figure. My nurse did not like the symptoms that I was expressing, even though I reassured him that I would be okay. However, my heart rate being elevated made him think otherwise. While in my driveway he called my GI, who immediately placed an order to draw labs and cultures. It wasn't long before my nurse returned with the supplies to begin my bloodwork. Unfortunately, he was only able to draw peripheral labs (from arm) since we were unable to receive any blood from my PORT. In order to figure out what was going on inside my PORT, I had to visit the VIR (Vascular Intervention Radiology) department Wednesday morning. This visit was rather quick and I returned home feeling rather normal, well MY normal anyway, and felt confident that everything was fine. I firmly believed that I was just experiencing another "flare".

​To my surprise, I received a phone call around 8:10 Thursday morning from my GI. This was very unexpected and sent my head spinning. He informed me that my peripheral cultures from Monday were negative, however, the PORT culture from the previous day was Gram Positive, indicating an infection. All of a sudden, I was in a whirl of confusion. How could it be possible? I had been feeling rougher than normal, but not to the point that I couldn't handle it. An infection in my PORT??!! I know how dangerous PORT infections can be. I also know that having an infection there can drastically change if it enters the blood stream, placing me at a risk of becoming septic. I did not want that to happen. My GI stated that I would have to be admitted to the hospital for IV antibiotics and that I would most likely have to have my PORT removed. Red flags overwhelmed me as I began worrying about how I would be able to stay hydrated without my PORT. A few minutes later, my GI called back and told me that I would be able to receive IV fluids along with my antibiotics while I was in the hospital. I was then instructed to enter through the emergency department and let them know that he had requested that I come in due to a positive culture in my central line.

​Emergency Department!!! Ugggh - I did not look forward to this at all. How long would I be stuck in the uncomfortable waiting room. Thankfully, everything went very smoothly. Registering was a breeze, as my GI had already electronically documented my expected arrival and reasoning. Immediately, I was led to a bed, the ED doctor came to speak to me, an assessment was taken, fluids were begun, and an antibiotic - Vancomycin - was started. I was rather impressed at how easy everything was moving along. Prayers were being answered.

I was even surprised and more than delighted when I saw who the doctor that was "officially" admitting me was. It was none other than, Dr M, my favorite all-time hospitalist. I had not seen him in over 3 years! He remembered me and my case very well. We spent a little while catching up, discussing new health issues since we had last spoken, and current symptoms that may have been related to the infection. I explained to him how difficult it was to distinguish which symptoms were worth noting and which were just common occurancies, especially being that none of them were truly uncommon. He completely understood my hesitancy in reaching out for help, though also reminded me that I know my body better than anyone else. After our conversation, he promised me that I would be well taken care of, that he would place me in the care of a doctor he thought I would feel comfortable with and a NP that I've become to know well. In addition, he said that he would make a note that I would be in control of my tube feeds and that I would be able to take a break or adjust the rating as I needed. He was the same doctor that I respected and appreciated years ago. Calmness overcame me until........

​Craziness overwhelmed me. All of a sudden, not even 10 minutes after my doctor walked away, I began feeling really strange. My heart began thumping really loud in my chest. It was pounding harder and harder as my heart rate steadily rose higher and higher. My head felt like pressure was continuously building, heat radiating from flushing, and according to my mom changing to darker and darker shades of red. It honestly felt like my chest and head were going to explode at any time. As I tried to stand up and walk to the bathroom, my blood pressure dropped and dizziness overcame me. Standing there, depending on my mother and nurse to hold me up, while waiting for someone to grab a wheel chair for me.

What was going one? Why was I all of a sudden feeling so awful? Come to find out, I had a reaction to Vancomycin. They call it "Red Man's Syndrome". I had never heard of that before, but learned really quickly that it's something I never wanted to experience again as well as something that the nurse's were fearful of. Apparently, it can be extremely dangerous, even lethal, if the reaction was to continue. After a break from the medicine, we were able to restart it and successfully administer it at a very slow rate.

​Everything else during my hospital stay was rather uneventful, which I did not mind at all. My PORT was removed on Friday, labs were monitored, tube feeds managed, and IV fluids with Vancomycin were administered. Absolutely everyone that I came in contact with during my stay - doctors, nurses, nursing assistants, etc were extremely helpful and pleasant. I honestly left without having any complaints at all regarding the care I received from the hospital staff. My GI even came by to visit me during my stay, which means a lot. I can't begin to explain just how important and reassuring it is to have a GI that truly cares about me as a person.

​All in all, I had a positive experience with a situation that could have been much worse. Once again, I was reminded of the amazing support team I have surrounding me. I am truly blessed!

In this video I am sharing what alternative nutrition may look like for those with Gastroparesis and Functional GI Motility Disorders.

Many in our community are literally starving and dying from complications from these devastating illnesses. Some are able to survive on small "bites" of food throughout the day or liquid only diets, still suffering the pain, nausea, and other relentless symptoms. Others are dependent on Feeding Tubes, IV fluids, and/or TPN to receive the nutrients that they need, but still facing many of the awful symptoms on a daily basis. There are very few treatments available, many of which are unreliable, carry black label warnings due to severe side effects, or not even FDA approved in our country. Please help us raise awareness! We're not invisible. We're tired of our watching our friends and members in our online communities DIE from malnutrition, dehydration, starvation, organ failure,  sepsis, etc as a result of the debilitating disease. 

How can you help? 
Sign to show your support and ask congressional members to support research and funding for Functional GI Motility Disorders.

Donations if interested can be made to 
IFFGD at https://www.iffgd.org 
or AGMD at http://www.agmd-gimotility.org/

#TakeABite4GP and share on Social Media

Learn more about GP from both the medical and patient side by checking out www.curegp.com

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 ​

Sometimes there's just not much you can say. Times get tough, body and mind become exhausted, circumstances that you may or may not be able to control start to overwhelm your spirit. So what can you do?

​JUST BREATHE!

​At least that is my current goal!

​I'm fighting to regain my positivity. I'm holding on tightly to my faith and belief that there is something more. It's hard! Living with chronic illness is chaotic. Life becomes crazy. Quite honestly, it wears me down. Horrible symptoms sometimes send me in a whirlwind, plummeting me into dark shadows. I become saddened as I watch friends and peers that are literally starving to death because the medical field can't figure out how to help us. I become frustrated when we can't gain the support we need for more research and awareness. (Something as simple as signing a petition for Congress to support Bill HR 2311, which would provide more funding for digestive motility disorders.)  I am heartbroken when I learn of deaths that could have been prevented if families, friends, and medical teams could have just shown empathy, believed their struggles, and cared enough to try and help. I become angry when I learn of more deaths in our health community as a result of being unable to receive proper healthcare, nutrition, or intervention due to the lack of knowledge or desire to understand our health needs.

​The emotions can become a tangled mess that drags me down, tears at my heart, and even holds me prisoner. Leaving me with the only things, most likely the most important things I can do.

​JUST BREATHE and TRUST that GOD has control and a plan that will make all of my struggles meaningful and worthwhile!

​I feel certain that God has his reasons. I have learned so much more about myself and the world as a result of my health journey. My relationships with God and family have become much deeper. I have witnessed times of strength behind my feeding tube and ileostomy. But I have also discovered some of my weaknesses.

I know that here are still lessons on Earth here for me to learn.
There is love for me to share and experience.
I can't give up now! Instead I have to press forward and

JUST BREATHE while I attempt to JUST BE whatever God intends for me to be.

"Breathe" by Jonny Diaz

We've all had experiences of our own experience with nurses, some good, some bad. For me, I have had my fair share, especially in the past 3 years. In honor of Nurse Day, I wanted to let nurses know how much you are appreciated. Nurse's have a unique job of helping us, the patients, at many different levels of our personal health journey.

As a result of my experiences, I have learned to never underestimate the power and impact of having a compassionate, empathetic, and kind nurse. Whether you are a nurse in the physician's clinic, inpatient at a hospital, scurrying around the Emergency Department, or a part of my medical team as a Home Health nurse, you are an essential part of my #patientexperience. The past 3 years have been difficult for me. Learning to live with my health issues and life style changes would be impossible without the wonderful nurses that I have met along the way. 

So what makes a wonderful nurse?
To me, having a nurse that listens, respects, and sees me as a person instead of a case is very important. When embarrassing events occur, they do not make me feel any worse than I already am. Some of my most memorable nurses, in various settings, have thoroughly explained procedures and treatments that I was about to face. If they were unfamiliar with the procedure, treatment, or even my diagnosis they asked questions and sometimes even completed their own research. Excellent nurses listen to my ailments and concerns, without judging. Sometimes they may ask questions or even offer suggestions that the physician and I may not have thought about or considered. Caring nurses have assisted me by relaying important messages to my physician, helping advocate for my health needs with my doctor and insurance company, and even calming me when fears and symptoms are heightened.

Thank you nurses for all that you do, day in and day out, to help patients receive the best possible healthcare. I admire you for all that you endure. You honestly make a difference in the lives of so many! Nurses can be a true lifesaver!​

​Hope you enjoy the video from ZDoggMD!

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