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.
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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.

Where do I go from here? 
What do I envision my future to be like?

I can question my medical issues, trivialize, ignore, avoid, or tolerate them,
but that isn't all my life is meant to be about. 

Life is much more complex than just my symptoms. Will I ever physically return to feeling good on most days? Will I ever be able to nourish my body with the nutrition and hydration that it needs on my own, without requiring the use of medical devices, lines, and pumps? 

I don't know, possibly, but also likely not, but shouldn't that be okay?
Does it matter how I fuel my body, as long as it gets fueled? 
Should I have to keep putting myself through torturous and painful attempts,
just to try and be more normal in the eyes of others?

It's such a tricky slope.
At times, I honestly want to stop everything for a break and to masquerade in normalcy,
if even only for a few moments. 

Of course, it always seems to catch back up to me. The consequences I face can be harsh, physically and emotionally. BUT, at least during those moments it's from my choice and fault.

Sometimes, I put way too much effort at following doctor orders and trying to be an "ideal" patient, that I end up losing myself. I'm not saying that I shouldn't listen to or consider what my doctors say, but if it doesn't help or it if creates more pain and problems, then I have to figure out how to be REAL and concentrate on LIVING my life the best I can as ME. No one knows how it feels to live inside of my body better than me - so it's my duty to try my best to listen to what my body tells me.

I guess it's kind-of comparable to the automotive world.
I mean, for a vehicle to function properly and efficiently,
it has to have not only a charged battery, but also an alternator to help keep it running smoothly.

Have you ever payed attention at the various vehicles that surround you throughout each day? 
Ever considered the story that they tell? 

Some appear to be perfect with all the bells and whistles, but have only experienced the same predictable routes day after day to maintain their pristine image. Other cars appearing to be perfect, may actually run like crap, if they even crank up at all, simply because the owner failed to take care of the soul of the car. Instead, too much time, attention, and effort may have been placed on their visual appearance or internal mechanics were avoided or ignored. 

On the other hand, there are some vehicles missing bumpers, with dents and dings on the outside. Maybe even spots of rust. The interior may have holes in the seat cushions or cracks in a window. Likely, many of the "extras" that are desirable, but not essential, may not be present, but the vehicle runs like a charm. The purpose of the vehicle is still successfully achieved in the eyes of the driver.

Then of course, there are some vehicles that are somewhere in the middle. They started out like every other vehicle, shiny and new with zero miles of experience. They function well for the most part, but may need more attention or support along the way. Maybe a tune up has been required more often than most, maybe some recalls requiring corrections, tires or other materials possibly replaced, a defective radio or aggravating imperfections ignored, an engine rebuilt, or so on. However, the SOUL of the vehicle is strengthened and treasured for the many memories that it has been a part of and for the positive experiences it has helped provide. 

I envision myself as being in the "middle" category. My personal body being like a vehicle that is no where near perfect, requires more adjustments and tune-ups than I'd prefer, but also is full of valuable memories it's helped create along my journeys. Spills on the floor from unexpected mishaps, scratches on the exterior from bumps and accidents along the way, replacement parts for areas that experience malfunctions, and creative alterations to maximize performance. Memories of traveling with and visiting loved ones, special events like graduations, marriages, new babies, and vacations appreciated. A vehicle filled with sounds of singing, crying, laughter, worry, and yes even disagreements, but also the comfort of knowing that whatever the outside looks like, whatever negativity my body has experienced, that I have survived and remained true with all of the memorable history and all of my soul. My body, a vehicle that may not be the most dependable or beautiful one on the road, a vehicle that other's can't comprehend or understand how it functions, (including me at times), but a vehicle that keeps on traveling in search of more positive and memorable adventures with my family. A vehicle that maybe one day will discover the secrets behind how to make it work more effectively and reliably on the inside or, who knows, maybe one day my vehicle will be revitalized,  better than ever anticipated.

Therefore, my current focus is not only on my outward appearance, but most importantly, on my overall functionability. Some days will be a bumpier ride than others, some much more daunting, but thankfully there will also be some days that I'm able to cruise along in the wind. 

Shawn Mendes just released a new song that I can relate to. His heartfelt and emotional song, "In My Blood" is so on point. Our contexts or experiences that lead to the feeling of giving up may be different, but it still pulls at my emotions. Everyone, sometime in their life, has felt like giving up. Whether it be because of anxiety from relationship mishaps, financial distress, personal conflicts, health, or a mixture of all the above, the thought of giving up seems to find a way to creep into our lives one way or another.

I admit there are times that I have felt like giving up. Some more serious than others. Sometimes I've wanted to quit physically, sometimes emotionally, sometimes I have wanted to quit the whole damn situation. 

Sometimes, I simply want to give up on my search for improvements. I want to give up trying to explain or figure out a way to feel better. I want to give up playing with trial and error treatments and medications. I want to give up rolling around a damn pole or carrying formula around on my back. I want to give up playing the wait and see game. I want to GIVE UP because of these freaking painful and relentless symptoms that haunt me day after day. I want to give up because I'm frustrated from trying to help my body with needed nutrition, only for it to lead to a flare of sickening and intensifying symptoms.

I feel like giving up because I feel selfish for trying so hard to feel better, when my sole focus should be on my kids. I feel like giving up because I'm tired of pretending to be strong. I feel like giving up because I fail at finding the right words to adequately describe how I feel. Sometimes, I want to give up instead of trying to connect with others. 

I want to give up because my health can make me so undependable and unpredictable. I want to give up because it can make me feel useless. I feel like giving up when I am forced to passively watch life's moments pass by. I feel like giving up when I continuously have to battle ridiculous fatigue for attempting to participate in life. I feel like giving up when tears start flowing due to feeling broken, like today. Feeling numb and dazed can make me feel like giving up as well. 

Hell, I want to give up for having the idea of wanting to give up. I want to give up because I can't seem to be me, even if I'm not sure who I'm suppose to be anymore. Giving up sounds so easy, but damn, it adds fuel to the next fire!! It makes me ANGRY after I feel like giving up. Angry, ashamed, and disappointed with myself for letting it cross my mind, even if only for a brief moment.

When I speak of giving up, it doesn't necessarily mean I'm giving up on actual life itself. It may be giving up for a particular moment in time and then eventually reverting back to a more optimistic or more productive outlook.

​The key is that I may FEEL like giving up sometimes, but I DON'T GIVE UP. I CAN'T GIVE UP! I have too much to live for, to strive for, and owe it to God and my kids to keep giving my all, regardless what obstacles I face.

Guess that's why I absolutely love Shawn's message and his lyrics.......

"Keep telling me that it gets better. Does it ever? Help me. It's like the walls are caving in. Sometimes I feel like giving up, no medicine is strong enough."   

"Sometimes I just feel like giving up, but I just can't. It isn't in my blood. It isn't in my blood."

​

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.

2017 may have not been an "ideal" year, but I honestly have to admit that it wasn't a wasted or horrible year either. Yes, there are things that could have gone better, health that would have been nice to see improved, activities that I wish I could have participated in, etc. However, while there were challenges, (there always will be), I learned a lot about myself. While facing fears and uncertainties, I gained courage and confidence. While in my low trenches, I survived by holding on to faith, depending on supportive family, and listening to advice from trusted medical team members. Along the way, I attempted to help others know that they are not alone with their health conditions.

Realizing the growth, regardless of how minimal, that I did accomplish in 2017, has lead me to no new resolutions in 2018. Instead, this year, I’m going to continue working on living in the moment, cherishing memories & time with kids and loved ones, using the knowledge and experiences from the past to make me more aware moving forward, and appreciate God’s continuous blessings & grace to help guide me along my life journey!

I am realistic and know that more tough days will undoubtedly be ahead, a new year will not remove all the pain, sickness, or fears! There will be days I'll feel awful, symptoms that will feel unbearable, circumstances that will confront my resiliency, and events that will challenge my self-identity and perception. 

BUT, I feel comforted knowing that I will also have times of laughter, joy, and pride ahead of me. Enjoyment will be found and witnessed, sometimes in the most unexpected places. These positive moments will make life worth living, worth celebrating, and worth looking forward to and hanging on for.

As a result....
this year I'm simply praying that 2018 has more ups than downs, more laughs than tears, & lots of loving memories that will last a lifetime and beyond!

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.

I'm sure the majority of people with chronic illness, whether invisible or not, have faced the confusion of how to best answer the "how are you" question on a regular basis. Whether you are at home, work, hospital, store, etc this question is all too familiar. I know that most people ask out of habit, as it's natural to say these three words when greeting someone. Most people are accustomed to replying with an "okay", "fine", "good", or some other simple response. I am guilty of answering in that fashion often, especially around strangers that I don't know. However, like many, I am not always speaking the absolute truth, just trying to be polite.

​It's easy when the person that you are speaking to is not familiar with you or your health and it's not imperative for them to know the truth, then quickly saying "fine" and moving on is alright. But what if it's a family member, friend, medical professional, colleague, or someone else that knows you personally? How do you answer the question then, especially on days when you really don't feel fine or when being falsely positive can be a hindrance in your care or best interests? 

Below are a few recent scenarios that have made answering the ordinary "how are you" complicated for me to answer. ​​

• Intense pain - I have become somewhat accustomed to feeling below par, varying degrees of constant nausea, and nagging levels of low-moderate level pain. However, the past few weeks I've been needing my heating pad continuously for higher than normal abdominal pain. There have been numerous nights, recently, when my body required me to sit or recline in my recliner with my heating pad on hi and a vomit bag nearby. The night before last, we were actually questioning if calling for an ambulance or an emergency room visit was necessary. (I've lived through a lot of severe pain experiences, but we've only broken down and called for EMS once.) My hesitation to reach out for emergent care is partly due to my lack of trust for the local ER. I don't know the cause of the pain that I was struggling with. It literally came out of no where and was extremely severe, easily a level 9 at onset. I was sitting on the couch watching Family Feud with my family, when all of the sudden my upper left abdomen had what felt like a Charley Horse spasm. But unlike normal muscle spasms it remained in spasm mode for a couple of hours straight. I was unable to move in any direction, couldn't sit up straight or stand up, and was in tears while trying to take short shallow breaths because breathing and position changes intensified the pain much more. All I could do was focus on my breaths, hold a heating pad as tightly as possible to my abdomen, and try to deal with the pain until it started decreasing. As time continued, my pain did not let up. It continued to be constantly sharp and began radiating to my side and back. None of our attempts for pain control were working. I remained at a level 8-9 for what seemed like hours at end. The pain can best be described as being comparable to labor (without breaks between contractions) or the ileus I had in the hospital after having my colectomy. Even sitting still was very difficult, and trying to talk only intensified my pain even more. My kids were very concerned and worried about me, scared because they didn't know what to do, not wanting me to end up going to the hospital, wanting me to feel better. When they frequently asked "How are you?" I hesitated before answering: "I'll be okay" and "I'll be fine". I think it worked to begin with, as they've witnessed many painful days before. However, after awhile they weren't so sure if they believed me anymore (Heck, I began doubting my own words as I said them) as this piercing pain was much different and more severe from the norm. Our oldest daughter tried to talk me into letting her take me to the ER, however, I had no idea how I could make it up out of my chair (yes the pain was still that severe), and knew the ride and wait would be unbearable in their hard uncomfortable chair. I convinced her that there wouldn't be much that they could do anyway, but if the pain increased any further or continued for another 30 minutes without any relief, that I'd seek medical help promptly. Thankfully, the pain did eventually begin to slowly decrease in intensity, avoiding the ER this time, with lingering but more tolerable pain afterwards. I admit that this situation could have been handled differently. I was not thinking clearly, possibly putting my health at risks, which I firmly suggest that no-one else doing. All I could think of at the time was how to make the heat numb the pain more, how to make sure that I kept calm with my breathing, and surviving 1 minute at a time. In this example, my response to "how are you" was complicated because I was fearful and in some of the most severe and extreme pain that I've ever been in at home. My response was to tell my kids what they wanted to hear, and I wanted to be true, so they would remain calm. I didn't want them to see the reality of my pain or cause them to worry about me. I just wanted the pain to end. Mentally, I was okay, I just had to keep holding on until I could feel decently okay physically.


• Hospital and Medical Appointments always seem to make the "how are you" question tricky to answer, simply because I don't want to give anyone the wrong impression. If I say that I'm alright, then why would I be at the doctor in the first place? If I don't say I'm okay, will they think that I'm having a difficult time coping? I want and need them to understand my symptoms so that they can help me, but don't want to come off as an emotional complainer. More often than not, I try to answer it with an "I don't know" or "I'm hanging in there." I am well aware that these answers are vague, but hope that the remainder of the appointment will lead to more clarity. 


• A family friend or family member will sometimes ask me "how are you". Knowing that my immediate family understands my situation for the most part, I will often tell them the truth, unless it's a really bad day. In that case, I often try to change the subject or downplay it to prevent worrying them. However, when it comes to a family friend or family member that knows I've been sick but may not understand the impact that it's had on my life, it becomes troubling. Do I say "fine" and walk away, leaving them with the wrong message, or do I try to elaborate?  The other day I was with my dad at the store when we ran across a family friend. Of course the initial pleasantries were exchanged and the dreaded "How are you?" was sent my direction. I hesitated at the moment, but decided that I would take the easy way out with an "okay". I mean I might not have felt great, but when compared to my new "normal" it was a pretty good moment. (Can't say day because unfortunately it didn't remain that way for long.) Unfortunately, or not, when she started to say that she was glad to hear it, my dad swooped in and told her that I wasn't doing great, but was having a more tolerable day.

As you can see the common question, "How are you?", can be complex to answer, with the normal "okay, fine, and good" answers carrying a variety of different meanings, sometimes accurate and sometimes just portraying what everyone, including me, wants to hear.

 
What do you think of when you consider the word "risk"? Does your mind automatically think of taking risks in positive or negative terms, or do you think of it as neutral? 

What about in regards to taking risks when living with chronic illness? Does the meaning of risk taking take on a different connotation or change in some way?  

In my mind, I visualize risks taking as being dependent on the circumstances at hand. I am aware that everything that I think, say, and do can be considered risky since everything can have good and bad outcomes.

Some risks are minimal with all results being decent. However, some risks can have extreme consequences, requiring me to take time to carefully weigh both sides of my options. I understand that life is unpredictable and is full of uncertainties, but I still attempt to reduce the threats and dangers, at least the ones I perceive manageable in the moment. 

​Currently, my risks tend to include:

1. deciding which medications I'm willing to administer to myself along with their possible side effects,
   
2. if I'll undergo certain medical testing or procedures in hopes of better understanding or relief even if they may not lead to any improvements,
3. whether or not to attempt drinking/eating something while realizing I'll likely feel bad physically afterwards,
4. and figuring out how transparent to actually be with my written or vocal words and actions.
5. In addition, risks are also involved if I let my pride interfere by halting me from making certain choices or pushing me to levels of overexertion.

When I take the time to recall risks that I have taken in the past, am currently taking, or see myself possibly taking in the near future - I recognize that some results are quite undesirable yet may also be worthwhile in the long run. Sometimes the results may be a complete mystery. Regardless, being human, I think that it's only natural to hesitate when trying to manage my risk responsibly.

This past weekend I remained home while my family went away for a weekend trip to the water park. While I don't like being left behind from vacations, I welcomed a little bit of "me" time. As crazy as it sounds, I'm still trying to physically recover from my outing earlier this month. Well that and the difficulty sleeping due to numerous nightmares each night over the past month or two. My lack of patience and levels of irritability have increased, which to me is a cue that I'm in need of some quiet 1 on 1 reflections.  

During my necessary "me" time....
I enjoyed bonding with our new kitten. 
I attempted to journal and blog - both of which were unsuccessful.
After deaccessing my PORT, I took a couple of long relaxing hot baths.
I turned up the speaker volume and listened to my favorite songs.

For some reason, the above just didn't quench my thirst to feel "normal" enough. I have spent so much time trying to be extra mindful and careful of meeting my medical needs and preventing (if that's even possible) undesirable symptoms. I've tried to stick solely to tube feeds, IV hydration, and only extremely low volumes of liquids. Quite literally, I was and am sick of playing it safe, to only feel discouraged and abnormal.

I wanted to feel at least semi-normal. I wanted to take a chance at seeking and maybe even achieving some non-sick normalcy, even if it meant that I would have to face some consequences. However, at the same time, I was well aware that I didn't want to risks stupidity or create any harm.

The thing is, I don't know what I am expecting or in search of. I know that there's a large spectrum of normalcy. Not everyone is the same. My normal is not the same as the next person's normal or the next. We all have our own "normal" which constantly evolves with time. Blah blah blah......

But what about when you look within yourself or at yourself from a different perspective and you no longer know what your normal is supposed to be like anymore? What about the times when you feel like a stranger in a stranger's body with a stranger's mindset? How is any of that normal? How do you accept your normalcy, whether it's desired or not, without completely retreating or withdrawing from yourself and others?

Because to be quite honest, I'm exhausted from trying to be normal in everyone else's eyes while also trying to make myself understand and accept that my current normal can be ok.