It's difficult to communicate to others, including to our families and ourselves, that there is no fix or cure for this awful disease, at least not yet. Depending on your individual cause, improvement may be found when the reason (other illness) is effectively managed. For the rest of us, at the moment anyway, it is all symptom treatment and management. Medicines to treat, or minimize, some symptoms that can in return create horrible side effects. Medicines to treat the side effects that were created by the medicines we were taking in hopes of alleviating symptoms. Surgery interventions that make us face a risk of making our illness worse in the off chance that it may possibly help use improve. I admit, I get frustrated with myself and others at times because I'm doing everything that I'm supposed to do, yet still sick. I know that too many of you can relate.

Everyday, I deal with troublesome symptoms. I used to be an active mother and teacher, a career I absolutely loved, but unfortunately had to eventually resign from due to my health. The evening of February 16, 2013 I went to bed as a "normal" 35 year old and woke up the following morning to an unexpected life of chronic illness. One where food was no longer a pleasure, but instead a nightmare of pain, nausea, and vomiting. I spent months unable to eat anything at all, in and out of ERs and doctor offices dehydrated, in pain, and in need for someone to listen to and actually willing to help me. However, I was unable to find any answers or relief with the exception of IV fluids, usually accompanied with blame for allowing myself to become dehydrated. According to them, I just needed to drink more water, what they didn't understand was I couldn't take in anything without drastic debilitating symptoms. It took numerous different doctors and two hospitals before I FINALLY found someone that understood the reality and severity of my health issues, took my condition seriously, and admitted me for the first of many hospitalizations. Even today, I still fear meeting new doctors as a result of some of the negative, degrading, and hopeless experiences I have been through. Thankfully, through determination and God's grace, I currently have an awesome medical team of doctors that authentically care about me, my quality of life, and that I can actually feel comfortable with trusting. 

At this time, the majority of my nutrition literally enters my small intestines through my GJ feeding tube I've had since 2013 and then exits my small intestines through the ileostomy that I've had since 2016, when I had my colon removed due to colonic inertia. Due to chronic dehydration, I have had a few PICC lines and PORTS. Both are types of central lines that are threaded through a vein to the entrance of the heart, but differ in the location they are placed and how they are accessed. I, personally, have a PICC right now to infuse Lactated Ringers at home throughout the week and for a couple of iron infusions when I am anemic. (Other people may use central lines for things such as saline hydration, TPN, antibiotics, and/or chemo.)

Having central lines can most definitely be beneficial but also come at a great risk for central line blood infections and sepsis. I have been hospitalized numerous times for infections that required removal of my line, broad course antibiotics while inpatient at hospital for at least a week, sometimes longer, and then having a new line placed. I have had friends, likely you have as well, that died as a result of central line bloodstream infections. It is a scary risk, but necessary for some in order to have any kind of quality of life. 

Daily I deal with pain, nausea, and fatigue. The majority of all of my health problems can be labeled as chronic GI motility disorders, (recently being rebranded as Disorders of Gut-Brain Interaction by Dr Drossman and the Rome Foundation). The Research Enhancement Act is a bi-partisan bill that we are currently trying to have co-sponsored and passed in the House of Representatives. It is also known as H.R. 3396. If passed, it can help increase research and awareness for GI motility disorders including but not limited to gastroparesis, colonic inertia, GERD, achalasia, and pseudo-obstruction. Even if our problems are not cured in the immediate future, better awareness, more effective treatment options, and improved understandings of the causes and impact of these illnesses on our lives and our family's lives can. Our successful #DCgreen2019 Gastroparesis March on Washington patient rally, our Facebook live Virtual March on Washington event, and our attendance and participation in legislature meetings with IFFGD (International Foundation for GI Motility Disorders) at their Hill Day event show that together we can, and will, make our voices heard to make a difference. 

In closing, I want to encourage each of you to never give up. Keep advocating for yourself and/or your loved ones. Find a doctor that is right for you. If you're not getting answers or aren't satisfied with the care that you are receiving, keep searching. You know your body best. When plagued with chronic illness we learn very quickly how important it is to actually create a medical team, one that knows and understands us and wants to work WITH us on devising the most effective plan for our personal best quality of life. Communication, empathy, and compassionate care are all beneficial along with medical knowledge.

Learn from your experiences, allow them to make you stronger. Remember you are NEVER alone. You will have difficult days, we all do. You may have days that you feel like giving up, I know I have. And that's okay! If you need to take it one day, one hour, or heck even one minute at a time - do so. B-R-E-A-T-H-E. Reach out for a supportive hand or a sympathetic ear when needed. Nothing is wrong with that. There's a whole community of people that care for you and are here for you, whether it's family and friends nearby, ones you connect with online, or both. I promise you are not alone. On more tolerable days, if possible, offer helping hands or ears to others. It doesn't matter if it's in person, by mail, over the internet, or by phone. Small actions can make a positive difference in someone else's day or even life, just like they can for you. Find a way to have your voice heard. Whether it's by social media, writing, talking, attending conferences or events, contacting your legislators, or something else - you have a purpose and you have a message that can make a difference. You may even discover that sharing your experiences helps you feel better mentally and emotionally. To me it helps bring the feeling of purpose and meaning to my life. 

On June 24, 2019 gastroparesis patients from across the country came together as a united front to spread awareness and make our need of more research and better medical treatments known. This was not an easy trip by any means for me, but I felt that it was a meaningful and worthwhile trip for not only myself personally, but for so many in the gastroparesis and GI motility disorder communities. 

I am extremely fortunate to have had support and encouragement from my family, online friends, and even my therapist to remind me that it may be a risky and difficult journey physically, due to my health, but also had the possibility to be a unique, purposeful, and special opportunity to me mentally and emotionally. So with fears in the back of my mind, curiosity and the desire to meet others in my online support group, the focus of possibly making a difference, and the determination to follow through on my responsibilities as a patient advocate and friend, I traveled to Washington, DC with my father and teenage kids. Not only did we go to DC to attend the #DCgreen2019 patient-created Gastroparesis Rally on June 24, but also for me to attend IFFGD's (International Foundation for GI Disorders) "Hill Day" event which included a short conference and a day of appointments with US Senate and House of Representative offices.

I spent the morning of June 24th with a few friends that have similar health issues as me, as well as with other digestive motility disorder advocates. Some of these other advocates were parents, medical professionals and IFFGD staff members and volunteers. The speakers during this morning conference were very interesting and informative as they shared with us the reason for advocating, important medical related information about doctor-patient communication, and how patients can be more proactive in raising awareness and pushing for legislative bills that can improve patient healthcare and treatments. Some of the speakers that we listened to were Ceciel Rooker (IFFGD president), Dr Baha Moshiree (GI motility specialist), Hayley McCorckle (IFFGD's public relations), Dr Frank Hamilton (chief of Digestive Disease programs branch in Division of Digestive Diseases and Nutrition at NIDDK), Peter Herzog (Washington representative for IFFGD), Dale Dirks (Washington representative for IFFGD, and Susan Chittooran (Patient Engagement Project Manager of FDA).

At lunch, those of us in the Gastroparesis Support Group who were attending the rally, left to go to our rally location. Originally planned to take place on the Capitol Grounds at Union Square, the rally was moved to an indoor venue, Ivy City Smokehouse, due to the threat of severe thunderstorms. 

The energy level increased as everyone began arriving at the venue. Hugs of joy, physically meeting friends met online, and making new friends that actually understand and share the desire to inspire positive change for our community led to a comfortable, exciting, and personal atmosphere. Often feeling out of place, like a "freak" due to health issues or awkward because of health accessories needed such as feeding tubes, ileostomies, central lines, etc  - many found this environment allowing each of us to feel "normal" as we were not alone and could truly understand and empathize with each other. As great as uniting and visiting with each other was, the afternoon would consists of even more encouragement and motivation. 

Melissa Adams Vanhouten, an amazing friend and advocate welcomed everyone to the rally and shared a moving, inspiring, and focused speech, which is linked below. Dr Michael Cline of the Cleveland Clinic spoke next, sharing important and beneficial facts about gastroparesis, treatment options at the present time, diagnostic tests that he finds most helpful and that should be done by all patients to check the motility of the entire digestive tract as well as autoimmune testing was suggested. He was kind enough to stay and answer questions from our patient community. His informative speech is also linked below. We also heard from a fellow gastroparesis advocate, Debbie, as she read letters of support and encouragement that the Rome Foundation and Dr Pascricha from Johns Hopkins sent to our patient community for this occasion. A dedicated, loving, and grieving father, James shared his daughter Nicole's personal story. He shared beautiful memories of her, the heartbreak of her illness, her love for life and her desire to make a difference and help others even during her own struggles, as well as his determination to keep her dream and memory alive by advocating for the gastroparesis community. A beautiful memorial service was then led by a fellow gastroparesis patient, Kristine. The rally ended with numerous brave patients sharing their stories. They included a child, a young adult with active sepsis, support group members that overcame obstacles to make it to DC, and a daughter expressing concern for her mother while also explaining that they are fighting so hard to advocate not only for her but even more so for the young children that are having to live and deal with this debilitating illness.

Two of the speeches can be heard here by clicking on the speakers name:
Melissa Adams Vanhouten 
Dr Michael Cline

Many gastroparesis members attended the #IFFGDHillDay event the following day, June 25th, alongside IFFGD (International Foundation for GI Disorders) staff members and other GI motility disorder advocates. We were divided into small groups based on our state prior to our arrival at our scheduled appointments with US Senators and House Representatives (or their staff). My North Carolina group had a busy and meaningful day meeting and talking with the offices of Senator Burr, Senator Tillis, Representative Butterfield, Representative Price, and Representative Walker. We were supposed to also meet with Representative Foxx, but due to unforeseen circumstances in the schedule, we just left a packet of information with her staff. During each of the meetings, we discussed the house bill 3396, also known as the Functional Gastrointestinal Motility Disorder Research Enhancement Act of 2019, that we hope will be supported and passed, as well as why it is important to our health community. We personally shared a portion of how GI Motility disorders has impacted our lives. (Unexpectedly, tears escaped when I was sharing my personal story with them, especially when I spoke of how it affected my kids and my career.) Other discussion points, besides HR 3396, were our pleas for them to increase NIH (National Institute of Health) funding, increased Department of Defense Gulf War Illness funding, and a FGIMD program for the CDC (Center of Disease Control). 

By far, regardless of how purposeful, meaningful, and powerful these two days were, it did not come easily. It took a lot of energy that many of us struggle for daily. As people living with chronic illness, attending these two important events required us to put our health at risks. Many of us chose to power through debilitating symptoms and add additional physical stress to our already worn bodies, all with the hope that our sacrifices would be worthwhile and make a difference, if not for us, for the gastroparesis and GI motility disorder community as a whole. 

In conclusion, we left feeling a sense of pride, encouraged by new connections and deeper friendships, and inspired to continue forward with our advocacy efforts. Feeling a sense of accomplishment, we are now in the process of determining what our next courses of action will be.

#DCgreen2019  #IFFGDHillDay

​On June 24th and 25th, 2019 a #DCGreen2019 rally will be held to bring awareness and knowledge about #Gastroparesis and #FunctionalGImotilityDisorders to Washington, DC. This will be held in conjunction with IFFGD (International Foundation for Functional Gastrointestinal Disorders).

For those that are unable to physically participate in person, a virtual march will be held as well. Everyone will be able to participate, whether in person or from the comfort of your home. 

Thank you to all involved in the planning phases! If you'd like to join in the planning please feel free to join us at https://www.facebook.com/groups/GPMarch/?fref=mentions&__tn__=KH-R! More specific details will be available at a future date. 

The tentative schedule in my friend Melissa Adams VanHouten's words:
"Monday will consist of an IFFGD-sponsored speaking event focused on Gastroparesis-related presentations in the morning (at a central hotel conference site) and our Gastroparesis rally (at the Capitol, within walking distance of the conference site) in the afternoon.

Tuesday will be the day we meet with legislators. We will meet briefly with the IFFGD in the morning to cover tips on engaging and conducting a successful office visit and then break up into small groups and head back to the Capitol for meetings with our individual representatives. At the end of our sessions, we will meet back at the conference site for assessment and some closing remarks.
Please keep in mind the itinerary is tentative, but the dates are now concrete. You are welcome to attend any or all of these events. Additional details to follow!

Let's go create some change!"
​

I have learned that vulnerability scares me and chronic illness has added to the fears. Throughout my life, I have built walls and reinforced them more and more as the years have passed by. I avoid letting others get too close in an attempt to protect myself physically, emotionally, and mentally. I do not like to let other people know the most protected aspects of my inner self and personality. Being vulnerable, in my experience, often provides others with too much power that in turn ends up harming me in some form or fashion.

Vulnerability as a patient, literally scares the hell out of me, especially with doctors that have not earned any of my trust. Vulnerability requires transparency, reaching out from my comfort zone, and taking risks that I will be dismissed, doubted, questioned, or mocked from the very doctors (or nurses) that I am trying to receive help from. Past medical experiences that I've endured have led me to retreat further and further, and created new apprehensions, memories, and fears. 

I've been dismissed, ignored, told it's all in my head, etc various times since being a teenager. Those same doctors, the ones that were supposed to be treating me and helping me get better, instead told me that there was nothing else they could do to help me. I believed them, because what they said was supposed to be right. They had the medical degree, not me, so I tried to convince myself to work through the symptoms, stop complaining, and to stop being a wimp.

And you know what? After months of dealing with the same issues with no improvement and often worsening symptoms, I finally ended up seeing different doctors which eventually led to answers and relief. In some cases, I had to deal with the ignorance in emergency and/or hospital rooms until a new doctor was assigned to me or my vitals went haywire. Each of these times, I had known that my body was not right - but was simply not listened to or not believed - and taught to doubt myself and my reasoning when I had been right all along.

I get it, we can't expect to be "cured" or "healed" when we don't know what the issue is, but making patients feel like they are making it up or not experiencing what they most definitely feel within their body, is more damaging and sometimes downright dangerous. In some cases even life threatening. If a doctor doesn't "see" the problem, if the test(s) aren't discovering the definite problem, the least one can do is reinforce with the patient that you believe them and are going to continue trying to help them find a solution that will help them feel better. It may take a while, it may take patience, it may take monitoring or trial and error symptom management, and that's okay.

It appears at times that Doctor's will suggest a possible issue, may (or may not) conduct a test or two to rule out a possible diagnosis, may try a medication, but then if you don't improve, it comes back as being the patient's fault. The patient is blamed for how they are feeling or blamed for not getting better yet. Many doctors can't seem to accept that they may be full of knowledge, but they still don't know everything. Some (thankfully not all) doctors carry too much pride or arrogance to admit that they don't have the answer or the cure.

As a patient, most of us gain respect from a doctor that admits this and follows by saying that they will not give up on helping us find improvements, even if symptom management is all that we can do. And trust me, there are some rather awesome doctors around! I can admit that. 

A little suggestion from a patient, please don't tell patients that they are not feeling what they feel, or that it isn't real, and then send them away or drop them as patients. This doesn't help! Patients remember and internalize the way they are treated and begin to resist and doubt the intentions of doctors in the future. They begin to lose hope, withdraw, and at times give up on not only the medical field, but on themselves. When we begin to feel as if no one or nothing can help us, that we are at fault for being sick and feeling as awful as we do, we lose our perspective. Many of us carry around the weight of being (or feeling like) a burden to our families, losing the careers that we worked so hard for and even loved, watching our family worry too much, or even begin to feel worthless. Who wants to live like that? We are all different, how we think and process things may be different as well, but at some point the resiliency and desire to keep trying so hard diminishes. 

We are expected to trust our doctors, sometimes more than we trust ourselves. We are expected to expose our vulnerability. But how? 

According to urbandictionary.com, the definition of Vulnerable is
"Someone who is completely and rawly open, unguarded with their heart, mind, and soul. Being vulnerable happens when you trust completely. Rather its vulnerability by pain or joy, it's being exposed with all of the emotions that make it easy for someone (someone you trust) to really do some emotional damage or healing.. Vulnerability is the surrender of all control and personal power in regards to letting someone close enough to destroy you!" 

Vulnerability as a patient is most definitely daunting. and intimidating. Placing your self care in someone that you are expected to trust, when so many other medical encounters have proven otherwise, is a difficult challenge. The frustration of some doctors minimizing pain and sickness, condemning you for not "getting better" or allowing your disease to interfere with your life, condemning or blaming secondary gain if you try to hang on to blessings or portray optimism - is a no win situation. Unfortunately, some doctors create more harm than good. 

Don't get me wrong - there are magnificent doctors around as well. They are able to "see" and "understand" their patients, are beneficial, and truly make a difference in healing or improving their patients' health, and in return life.  

The thing is, when a someone is already struggling and falling apart from illness and it's impact on daily life, a doctor has the power to throw the life line to help or the anchor to make one drown faster. Sometimes the tide that moves us, is set in motion by the personality of doctor that treats us. Literally, our lives can depend on the luck of the draw or flip of the coin. 

For example, 
I spent months dealing with severe off and on lower back abdominal pain and nausea as a young 32-33 year old adult. I had extreme pain spells that would take my breath away and bring me down to my knees. My primary continued to tell me that if I lost weight it would help. According to him, my pain was a result of my eating habits and lack of exercise. I was told to take tylenol. There was nothing else he could do. Labs were fine. Could be a pulled muscle. Probably just stress. Etc.... (Chronic Patients know the routine.) I was made to feel like a fool. But once again, doctors are "supposed" to know best. So I continued teaching through the sporadic pain spells. Tried to ignore them. My young kids (a first and third grader at the time) massaged and walked on my back to help relax the muscles. Labor Day weekend 2011 my symptoms became too extreme to stand or sit. I couldn't stop throwing up and heaving. I could no longer ignore my body's messages. I could no longer convince myself that the doctor was right and that nothing, besides my weight, was wrong with me. Hours later, I gave up and drove myself in the middle of the night to the local ER. (I have no idea how I made it there in the condition I had allowed myself to get in.) Treatment in the local ER was inadequate as well. My pain level was off the charts. I couldn't stop vomiting. I couldn't find a comfortable position. The pain was making me extremely restless, dizzy, and weak. They discovered that I had a 9 mm kidney stone. We were told that I would be sent home with medicine and would just have to wait it out. While there my body was literally shivering out of control. My teeth chattering so hard that I was unable to get them to stop or even slow down. I was FREEZING internally. But I had no fever, so the nurse berated me, telling me that it was "JUST a kidney stone - stop being a baby." My husband left to go pick up the medication while they went through the discharge procedures. My mom was concerned and kept telling them that they could not send me home like this. Apparently, my coloring did not look good to her. Something was definitely not right. They ignored her. I was in too much pain to talk. They took my vitals one more time before discharge to find that my blood pressure had dropped to 60/30. I went from being rushed to discharge to raced upstairs to the ICU, had emergency surgery, and upon being placed in a recovery room, my blood pressure crashed again so I was rushed back to the ICU. A day or two later, after I stabilized, I spent nearly a week hospitalized in a regular room. My mom told me that it was like I was in a coma (though wasn't). I didn't talk, move, or open my eyes for days. The "just a kidney stone" that I was such a "baby" about was actually impacted and had caused a major kidney and bladder infection. My body was going into septic shock and my family was told that my kidneys had been in the process of shutting down. My doctors later told my family and I that I would likely have died if I had been discharged from the ER. I was fortunate. During the madness, someone did step up, listen, and take care of my needs.

I have other memories validating the fact of medical professionals doubting and dismissing my health concerns, only to later find out that I did indeed have something going on that could be corrected, contrary to their belief that "everything was fine."

From gallbladder stones, to severe constipation and impactions as a result of colonic inertia, pain and problems from pelvic floor dyssynergia, esophageal spasms from hypertensive lower sphincter, and central line infections (including bacteremia for at least 2 weeks while searching for answers and help while extremely sick), my experiences have varied over the past few years. Doctors have proven to me that vulnerability is a risk that I may NEED to take, but still fear greatly, because of previous medical experiences. Stating that, I must give credit to the doctors (and nurses) that did listen and help me in the midst of the negative experiences. Additionally, I must remember that, like us - doctors are human. Like us - doctors  choose how to react and will make mistakes sometimes. Like us - doctors have good and bad days. Which unfortunately doesn't make being vulnerable any easier.

I have had and currently have some wonderful and greatly appreciated doctors. Even though I may trust them, how much I actually open up or let them know depends, as I find it pointless to keep repeating the same issues/symptoms over and over when I know that there is no simple fix. But knowing that there are knowledgeable and compassionate doctors that are willing and wanting to help is most definitely reassuring.

So as one can see, vulnerability as a chronic illness patient can be very challenging and frightening. Our lives are put in the hands of others, we have to be transparent in order to have a chance of some relief and healing, while knowing in the back of our mind that we are placing ourselves at risk for additional harm as well as lack of understanding or relief. This is just a portion of the reason that vulnerability fears invade me in regards to healthcare.

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!