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.

Shivering, cold chills tingling through my frigid bones and muscles
Exhausted and as cold as an icebox in the midst of winter. 

Intense desire of crushed ice piercing through my body. 
Full and bloated, yet cannot calm the raging cries for ice!!

Starving and thirsting for the freezing crunch to be felt between my teeth.
Wanting to relieve the burning sensations in my mouth. 

Goosebumps running along my arms and legs as I shudder and quiver under my heating blanket.
Whether I'm on the recliner or in my bed, the blanket is set to high.
At times, even needing the assistance of my heating pad.
Sweatpants, sweatshirt, and thick fluffy socks should be enough to keep me warm.
My stomach bloated, full, and nauseated but something inside still demands ICE! 

Nothing seems to make it calm down.
Agreeing to listen to my inner craving calms just a little when I give in to chewing ice. 
Annoying my family to the max and setting my other symptoms haywire.
Literally freezing the interior of my body, risking my teeth, in search of what?

ICE??
​
Ice from Sonic, Chic-fil-a, Hwy 55, or my favorite Cookout
​are preferred due to texture.
Crushing ice in a blender at home is a possibility as well. 
I've also tried frozen Italian Ices from the grocery store and can't leave out an occasional Pelican's shaved ice. 
I don't want the sugary syrup, don't want any soda or drink, just want lots of extra extra ice. 

I attempt to avoid the constant desire for ice.
Allowing myself to cave only once or twice a day & limiting the volume.
Whatever ice I place before me will eventually be chomped away. 
Leaving me with even more coldness and stomach discomfort to endure. 
An endless cycle of madness that I can't seem to alleviate. 

A paradox of ......
craving and chewing ice when I'm already experiencing cold tingling shivers that I can't warm up.
a stomach being crammed and forced to deal with ice, when it's already fighting against any intake.
listening to my body's a win-lose situation. Part of me wins while the other is denied & punished.

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? 

The past month or so has been rather eventful. I finally felt like I was recovering a part of me that I had been missing. My goal of growing spiritually was evolving nicely. Feeling confident that I was on the right path, enjoying short outings to church and even a couple of life group meetings, and evaluating my personal goals and relationships by focusing on my book study, all added purpose to my days.  I actually believed that I was on the path to regaining some self-worth and meaning in my life. Physically, my body was still symptomatic, even alongside my spiritual and emotional improvements. Symptoms still interfered and roared their ugly head, but at least I was traveling in a productive and appealing direction. 

UNTIL... my body decided to throw a complete, indescribably, irrational, and unforgettable nightmare my way. Without going into the specific details about my health experience leading up to and including the infection that resulted in an unexpected hospitalization, fears have clearly returned. 

I would think that it's only natural to rethink, overthink, and even become overprotective with the goal of preventing a repeat. However, I was not ready, and still not ready to accept, moving backwards. I was just gaining the confidence to take risks, as minimal as they may have been, to feel alive.

Currently, that progress has disappeared. Everyone has me walking around on eggshells, including myself. Fears of repeat infections or overexertion are at the forefront. Concerns over being sick during the holidays, avoiding all the colds and illnesses that are so prevalent right now, and worries of what is yet to come regarding PORT replacement in the future, are all playing in overdrive. 

Now it's time for me to figure out how I will go about regaining the ground that this most recent health dilemma has stolen from me. But first, I must find the energy and patience within myself.

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.

​

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.

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.

More recent deaths, both in my physical and online communities, cause me to contemplate how I can better improve the quality of my life. Anyone can become sick or sicker at a moment's notice. We ultimately do not have complete control over our health, no matter how much we may try. Similarly, tragic accidents happen everyday. We can try and take preventative measures, but those measures may or may not be enough to provide us more time with loved ones while we are here on Earth.

Realizing this confirms just how important it is for me to make each day count for something. My goal is to feel as if I am living, not just existing or wasting space, so when it's all said and done I'm not full of regrets. This is easy to say, harder to do, especially when attempts to "live" can cause immense fatigue or drastically increase my symptoms. Achieving an acceptable level of balance that respects all areas of my health (physical, emotional, and mental) while also limiting frustration, minimizing undesirable consequences, and reducing regrets is undoubtedly extremely challenging and even troublesome at times. 

So what can I do?
How can I encourage myself to redefine my life with illness without sacrificing too much of me? 
Below are my current plans of action...

Foster or participate in positive moments to reflect on with the kids
Maintain memories by regularly writing in personal journal
Work on completing the ALL ABOUT ME journal to be passed down to my kids
Create Picture DVD videos for each child from old picture film canisters and memory cards
Focus on and appreciate all of life's blessings, no matter how small
Fight for the best possible healthcare
Spend quality time with kids and family
Stay up-to-date with research so I can make best educated choices
Help others along health journey by sharing awareness, answering questions, and offering support 
Cuddle time with Pets
Consider how I can continue to grow as a person (hobby, books, writing, online class, etc?)
Have courage to live life true to me not others' expectations
Take time to make conscious decisions each day that fulfill my personal needs/roles 
Take reasonable risks while accepting and being patient with myself during the consequences
Live life less seriously to enjoy more moments in the moment
Respond to myself the same way that I would treat a friend going through something similar

Undoubtedly, no matter how devoted I am to the above goals, things will not always turn out the way that I expected or wanted. I will never be able to eliminate or avoid all regrets. Bad decisions will sometimes be made as I'm only human. However, when looking back with 20/20 hindsight, I need to remember why I made the decisions I did and remind myself about what my intentions were at the time. Even if I don't like the end results after some of my actions or choices, if they were made with the right intentions in mind I should not burden myself with any regrets. 

Living life with chronic illness does not mean life will be full of regrets. Life is what we make of it. 

I am so angry with my body. I am extremely frustrated at how much deception is occurring as a result of dealing with this damn sickness day after day. 

Once in a while my mind and mouth say "Try a little ---- yogurt, milkshake, applesauce, mini muffin, etc. (Mind you, only 1 is attempted during the day and even then usually only a couple of times each week.) They coax me along,  "It will be delicious. It shouldn't cause you too much trouble! You won't regret it. What's the worst it can do? You need to keep trying so you get additional nutritional intake and to avoid more damage to you digestive system."

Initially, my stomach says "That wasn't too bad. It tasted good. I'm really full but I think I can handle this. Thank you." However, my stomach and mind then turn on me. They mastered deceiving me once again. Out of nowhere, no matter what I'm doing, nausea and pain hit me hard a few hours later, if not earlier. My mind first responds with "It's okay, at least it was good. At least you were able to enjoy a little something. We've got this!"

Then disaster hits when side effects continue and intensify. "What were you thinking? How stupid can you be? Why are you going to keep doing this to yourself?!!! You deserve the pain and nausea because it's your fault for trying a little something in the first place."  My stomach chimes in with it's attitude of "you will now pay for putting me through this hell. You want to keep playing with me, testing me, well guess what, it's time for you to be punished. I'm going to make you feel as awful as possible. Just remember, you are the one that wanted to take the chance - now you can deal with the consequences." 

See the deception!! It's unexplainable and disturbing for sure. But that's not all!

Physically, I deal with deception as well. My mind wants my body eager and active, but my muscles do not always agree and definitely do not like to cooperate. My muscles and mind work together to tell me that I should be fine if I do this and that. They tell me that it would be fun or nice. They remind me of how much I'm missing and encourage me to be more actively engaged so I don't miss out on life.

Sounds great, right? I mean doesn't everyone want to spend time outside, go on vacations, go shopping at the mall, or take scenic walks with their loved ones? Wouldn't activities help the family be closer, make life more enjoyable? So I spend hours, days, or sometimes even weeks to decide if I can be courageous enough to take the chance. "What kind of complication or consequences will I have to undertake? Can I successfully survive the consequences?"

Finally, I gain enough confidence and decide to agree to live more. My choice may be as simple as going shopping, attending a movie, or taking a calm relaxing vacation with my family. In the moment, I go all in! I mean, if I'm going to be required to face consequences afterwards, I might as well enjoy the moment to the highest maximum level.

​My family and I do try to make as many accommodations as we can beforehand. Most of which, I tend to agree with (with the exception of using a scooter). I don't like admitting that I need to take a break, leave early, sit back and watch others have fun, or cancel. If I start something, I will do everything in my power to complete it as expected. I will not look for excuses or express too many complaints. Lots of times, it's my family that sees when I'm physically struggling and reevaluates and/or makes adjustments to our plans. After deceiving my body enough to participate in life, allowing adrenaline and emotions to take control of my actions, my body becomes enraged. My muscles and energy crash on me. Then my body furiously punishes me for days and sometimes even weeks. Leaving my mind to feel deceived as well.

Another example of deception is when my mind and body try to deceive others with the outward appearance that I portray. With a smile on my face, I try to convince others that I am fine, that I'm okay, that I am strong enough to handle things, and that my shortcomings do not bring me down. I try to persuade them, regardless of how bad I'm actually feeling, that I have things under control so there is no need for them to worry about me anymore.

As previously stated, it's quite apparent that I have become a body of deception as a result of my chronic illness and it's impact on my life physically and mentally. But, I must admit, this body of deception does at least allow me opportunities to feel alive.

 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!

​Living with chronic illness can be extremely frustrating and complex. All of the sudden, life no longer appears the same. It takes on a completely new view. Simple things that were taken for granted are now appreciated more than ever. Not only do you have to adjust to life style changes, but your outlook on life in general may change as well. At times it may even feel like you are no longer you, almost as if you are a character in someone else's story. Regardless of who you were when your illness began, all of a sudden you begin to become an "expert" about yourself and your condition. New knowledge about every aspect of your illness (illnesses) becomes a part of your everyday language; diagnosis criteria, medical terminology, symptom descriptions and explanations, diagnostic testing, treatment possibilities, coping strategies, etc all become familiar common day to day discussions.

​Additionally, the relationships you have are often altered. Some friendships are lost as new ones are created. Some connections are strengthened where as others diminish. And that's ok, because you are no longer identical to the person you were before your illness. Sometimes the paths we are traveling do not coincide with the paths that others are traveling. This is not always an easy concept to accept, but with time you will be able to determine the people that are necessary to accompany you along your health journey. Through experiences you will be able to discover which relationships provide you with the encouragement and support that you need. Be patient and remember that you're not the only one that is facing a change in their life. Everyone has their own circumstances to navigate.

​Everyone's experience will differ, even if the medical journey has many similarities. The dynamics of friendships, families, medical teams, and colleagues as well as individual personalities all play a part. I could go on and on all day describing the way that my personal relationships have changed. Today, however, I want to focus on how the relationships that I have with medical professionals and my communication with them has been influenced by my illness.

​During my childhood and early adult years I did not put a lot of thought in characterizing nurses and doctors. Basically, if I needed a flu shot, had an injury that needed to be looked at, was dealing with a cold, or sick with a "common" virus that was being passed around, I could simply find a doctor to visit. It really didn't matter to me which nurse or doctor I saw. There was a blanket trust that they would know what was wrong, share with me how to treat it, and then send me home to recover and feel better. I did not understand the importance or value of remaining with a specific doctor or taking the time to create a bond. During this time any nurse and any doctor could meet my needs, whether they had seen me before or not.

But now that's not true. When plagued with a chronic illness you learn really fast how important it is to actually create a medical "team". A team that knows you and understands you. A team that will work with you to devise a "game" plan. Communication, empathy, and compassionate care all become necessary, along with their medical knowledge and expertise. It's no longer a quick in and out, routine, easy fix. The relationship with your physicians and nurses matter now. You can no longer survive with just "any" doctor. The type of relationship formed can be extremely powerful, possibly even a game changer or life saver.

Unfortunately, assembling an effective medical team that meets your personal needs is not as easy as it sounds. Personalities can clash and the type of care that you each expect and envision can differ greatly. A single doctor and/or nurse can completely ruin your perspective, can be dismissive, discouraging, and make you feel as a failure or lost cause. On the other hand, a single doctor and/or nurse can be the light on your darkest days. They can offer encouragement and provide you with hope for the future just by taking the time to show that they care about you as a person, not just a case number.

I am fortunate to have a medical team that I trust, respect, and am comfortable with. In my heart, I truly feel as if they are here to help me along my health journey. They may not have all of the answers, they may not  hold a key to the cure, BUT they ensure me and show me with the actions they display toward me, that they will not give up on me. I believe that they will continue to help me search for improvements regarding my health. They listen to me and actually seem to be invested in figuring out how we can work together to make my life with illness more tolerable.

Sometimes, I'm in awe at how proficient and knowledgeable they have become at understanding me. When you realize that you are surrounded by doctors and a nurse that can uncover the truth about how you feel (even when you're trying to be strong and brave), then you also realize how comforting it feels to know that you are in great hands. Unfortunately, not every doctor or nurse fits this criteria. In fact, it can be a rarity when dealing with chronic illnesses. However, my current medical team is phenomenal! I can not deny that I feel blessed with the care that I currently receive. I appreciate and value my medical team more than they will ever know, though I do attempt to express my gratitude with them. I may still have plenty of health struggles, but I am relieved knowing that my best interests are being looked after, at least for now.

Even with a phenomenal medical team, I still have challenges. If you've read my previous blogs, it's no secret that I have a difficult time being completely open about my symptoms and how I feel. All  too often, I hide how awful I feel and have trouble expressing the true severity. My family and medical team are well aware that I tend to downplay my symptoms a lot. The majority of the time, I remain quiet in an effort to remain positive and to keep from annoying or bothering. What they may not know, is that I have never been as open with anyone, especially doctors, as I have been the past couple of years. I'm still on uncharted waters. I really want to be completely honest as soon as issues arise, but emotionally I second guess myself. Before messaging or calling them, I spend hours, days, and sometimes even weeks trying to determine if it's worthy of bothering them. I'm not trying to be stubborn, but instead wanting to demonstrate my respect by not wasting any of their time. I value their support so much that I do not want to chance pushing them away, irritating them, or becoming known as a constant complainer. I try my best to make sure that I keep them updated, it's just that sometimes I'm not as quick or as clear as I should be. If I'm going to contact my health team, I want to be sure that it's important - not something that I should be able to correct on my own and not something that will improve on it's own if given enough time. My doctors, home nurse, and family members have done everything in their power to encourage me and persuade me to be completely open and not hide or minimize my struggles.

In an effort to better communicate, I must first determine how to distinguish the difference between updating/sharing concerns (which is desirable) and complaining (which I want to avoid entirely). I believe that updating and keeping my doctors informed is essential in order to make progress and improve my quality of life. If they ask, I do always try to answer as honestly as possible. I acknowledge that I need to reach out if a new issue arises, if I'm feverish or experiencing chills, or if the severity of my symptoms intensify for days after days and are not improving with our current treatment plan. Updating can be necessary if there's a possible treatment plan or adjustment that can be made to improve my current condition. On the other hand, complaining would be best described as a nuisance nag with no action or treatment expected in return. I feel confident that I do a great job at not complaining to others, for the most part,  but can likely do a much better job at updating. I also admit that many times I hesitate or  procrastinate too long, but it is always with my best intentions and out of complete respect for my medical team.

​In conclusion, many aspects of your life can change when living with chronic illness. Your relationships with family, friends, self, and even medical professionals are certainly going to change. Your power lies in how can you make these changes work in your best interests.

What can you do to ensure that you are surrounded by the care and support that you need and deserve? My current goal is to allow my family and medical team to learn how they can better help me. In order for this to occur, I'm going to have to be brave enough to let down my guard some more and become a better communicator. 

How often do you sit back and contemplate which direction your life is heading? Is it on the course that you imagined or dreamed of? Most likely there are dreams of yours that have been ignored, set aside, or possibly some that you are still striving to achieve.

​Today, a friend directed me to a powerful video message. It was extremely thought provoking and inspiring, similar to a few other motivational speeches and songs that I've listened to recently.

When times are difficult, it's so easy to sit back and try to "wait" it out or hide. But how often do we actually "FIGHT" for what we want, persevere with relentless drive for the dreams we envision, use our power of our mind to change our circumstances? 

​While listening to the video, I tried to look within my heart and soul. I'm not going to lie - I experienced a myriad of emotions. Part of me became sad because I honestly felt as if I was giving everything I had and more to make my dream of being an inspirational teacher come true. I pushed myself through sickness and pain, spent endless hours searching and planning for meaningful classroom lessons and experiences, laid my heart out to reach and connect with students that didn't see the potential that resided inside of them. I LOVED teaching with a PASSION - it was, without a doubt, a dream come true. A career that I enjoyed and that made me feel prideful. I honestly felt like I was making a positive impact on the lives of others, thought I was using the talents that I was blessed with to live a life full of purpose. I was sure that I was taking the path GOD intended me to follow.

When I became sick, I admittedly didn't listen to my body's personal needs. My body and my health, were not my priority. Teaching and being an active parent were much more important to me. I literally continued teaching, working, and staying on the go with my kids. While feeling worn down and sick I continued to stay busy with all of their school related and extracurricular activities as well as all the "motherly" duties I expected of myself.  I even took classes online at night for a few years so I could earn my Master's and better provide for my family. Regardless of what my body was trying to tell me, I was strong minded, strong willed, and gave everything I had to live the life that I envisioned as a mother and teacher. I was determined to not let anyone or anything (including my own body) destroy my desire for teaching. I did not bother to consider or listen to the advice that my family kept expressing. Instead, I kept fighting and kept pursuing my dreams until my body ultimately crashed. I did not value my needs, because to me that felt as if it would be selfish, expressing weakness, and was just not a priority. In retrospect, and as an outsider looking in, I realize that to give my best, I need to be at my best. And that can only happen when I fulfill my personal needs, namely my health. Ignoring my health needs and symptoms will not make them disappear. I've tried that thinking over and over again and all it does is lead me to more issues. Unfortunately, some of that ideology came from medical "professionals" (such as doctors and nurses) that minimized my concerns and the impact it was having on my personal life, when I did finally reach the point to actually ask for help/assistance.

​As I reminisce now, I'm not sure what to think. Could things have turned out differently if I'd taken different actions? Did I inadvertently cause self-destruction? Did I take my health and time with family for granted? Was I missing something? Even though I was living with purpose and drive for what I wanted in life, was there something else that GOD had in mind for me?

​I don't know the answers to these questions. Have I made mistakes in my life that make me wonder what if? Sure, everyone does. Was life peachy clean? No, but I knew what I wanted to do and I did whatever it took to be successful as a mother and teacher. At least that's what I thought I was doing.

​Now, look at me. Illness has overcome me. I don't want to be a "victim" but I also don't want to make my situation worse. I still have a difficult time listening to what my body needs, but attempt to make my health a higher priority. My dreams of making a difference in the classroom has ended - at least for now. My role as a mother has been altered. Activities, hobbies, and interests that I once enjoyed are not possible at this time. In the beginning, I was persistent that illness was not going to interfere with my personal life. Wow! That was a joke - the harder I fought for normalcy the worse my health declined.

​For the past 4 years, I have tried to determine what the right balance for my life is. How can I fight with mind, heart, and body to accomplish my dreams without causing more damage? How do I determine which dreams are worth pursuing and which are too costly or too far out of reach for my reality?

​Life is not meant to be easy. We are meant to be great - not average, but you have to be willing to put forth the work and heart to make it a reality. But how? I understand that we grow during our most difficult battles. I'm aware that there is so much left for me to learn about life, but which aspects are the most essential to fulfill in my lifetime?  So much time has already been wasted - so how do I make the most of what time I have left? Which dreams are worth pursuing? When one dream conflicts with another - what do you do? When giving 120% in one area requires me to compromise or give up on a different one because I can't envision a path that would effectively meet or surpass all of them, what then? How do I ensure that my choices are respecting my personal needs while servicing others to my full potential?  I am aware that not all of my decisions can be easy, that the most difficult decisions are the riskiest yet also have the capability of being the most worthwhile.

God is the only one that can see the future, so sometimes we have to take a leap of faith - and that's fine- but when life and health is so fragile - how do you determine which choices will lead to the most desired results? When health is an issue, where do you draw the line between making healthy choices and taking the risk of chasing dreams?

​(Just something to think about.)
​

Deep slow breaths, in through my nose, out through my lips.
In --- and ---- out...
In--- and ----out -
as I prepare myself for the dreaded but necessary trip to the grocery store. I look over the list of items that I need to purchase. Meal options for the next 7 days have been planned out in advance so we have everything we need for the upcoming week. Since I'm unsure of what each day holds, I've selected a variety of meals, the majority of which are simple enough that the kids can handle it without my help or with only verbal assistance. I've taken the time to rewrite and categorize the items on my list, so they are basically in the order that we will get to them as we shop.

This outing, like all of my other outings, are too much to handle on my own. My energy and stamina limited and unpredictable, changing in a moment's notice. This is an errand that Diamond , and sometimes Carmen, assist me with. We've learned by trial and error that grocery shopping first thing Friday or Saturday morning, 8-9ish, is the best on my body. It's not busy, in fact the store is basically empty of customers at this time.

​As I ride along in the passenger seat of the car, I look out of the windows contemplating what I will choose to do today. Will I challenge my body and walk the store? Will I listen to my body and drive the motorized scooter? Will I decide to protect my physical needs or safeguard my mental perspective? In my mind I flip back and forth, back and forth, unsure of what's in my best interests.

​Hmmmm!!! Which side is most essential for me today? I can easily ramble off the positives and negatives for each selection - some sensible, reasonable, and logical, others possibly insignificant, but all profound just the same.

​Experience has shown me that when I'm stubborn and decide to walk, I regret the decision a few minutes later. Pride keeps me moving regardless of how weak or lightheaded I feel. I will continue to push forward and face the consequences at the present time and for the following days as well. Headaches, wrinkled fingers, blurry vision, unsteadiness, internal shivers, and fatigue are just a few symptoms that often present themselves. Luckily I have IV fluids awaiting me when I return home. (Another reason I have selected Fri or Sat to go to the grocery store.) My family often gets annoyed with me when I choose this option, 1) because of the visible signs they witness and 2) because of the time and struggle it takes to recover. I on the other hand feel pride for sticking it out and being more "normal" at least for an hour or so, but left feeling disappointed and irritated when I realize that nothing has changed, that my body isn't better, and the physical price I have to repay.

​Utilizing the electric scooter for the time I'm at the grocery store is undoubtedly the wiser option to meet my physical needs. It makes my daughters worry less, it makes us all feel like I'm "safer" , it protects my limited energy and strength, and lessens the amount of time and degree of exhaustion that I will have to endure when I return home. BUT it requires me to face the fact that I'm sick! It's just another example of how I have lost my independence. It's a reminder that my body is weaker and more fragile than the elderly  that are able to run circles around me. While riding the scooter makes me feel better physically, prevents the severity of symptoms that follow the outing, and decreases the amount of time that it actually takes to complete the grocery trip, it hurts my spirit. Emotionally, it makes me feel inadequate, makes me look lazy, makes me question my need, makes me consider what others are thinking and/or saying. I know that it shouldn't. I understand that the reason they have the scooters in the first place is for people that need to use them. I'm aware that others don't know what my body has been and continues to go through - just as I don't know their personal story or what they are actually thinking (if they even are) about me. I know that I can't control others' opinions and that what they think doesn't necessarily dictate the truth of the matter. BUT admitting that I need help once again, that my body can't handle something else once again, that tools and/or machines are required for me to function ONCE AGAIN is disheartening. What am I becoming?

​As we approach our nearby Food Lion, my mind ponders about why I  am so determined to go grocery shopping in the first place? What is my ultimate goal?  I remind myself that I want to feel needed. I need to fulfill my desire to be a productive member of my family. Grocery shopping gives me a  pertinent reason to get out of the house and helps me feel more successful as a mother. If I actually go shopping, I can ensure that my family has something at least semi-healthy to eat during the week. Why do I elect to choose the dreaded grocery shopping as my weekly "chore" anyway? Isn't there something else that I could do to satisfy my thirst for a "normal" life? Something that I might even enjoy or that may be less draining on my body. If so, I have no idea of what that could possibly be. Grocery shopping is necessary and can not be avoided or postponed but for so long. I reassure myself that it is "normal" to do things that you dislike or hate to meet the needs of those you care the most about. It's "normal" for mothers to make compromises for their children.

​Apprehensively, I trudge toward the storefront's door.
What will my fate be today?
Closing my eyes I stop to take a breath and slowly breathe..
​in ------ and ----- out
in ------ and ----- out

​If only for a slight moment,  
I finally feel like a "normal" mom,
​completing a "normal" task,
with a "normal" annoyance....

​Gradually I reopen my eyes to my reality and the choices I have before me.
Which part of me will be victorious today?
​Will I successfully accept my body's physical needs, listen to my family's concerned pleas, and ultimately ignore all of my self-doubts and fears? Or, will I stubbornly tread through the seemingly endless grocery store aisles in an effort to demand some independence for myself?

​The decision may appear trivial or petty to many, but when your life has been turned upside down from illness, when everything seems to be spiraling out of your control, it's only natural to grasp on to whatever control you can have, no matter how small or minuscule the issue or task may be.

Desperately needing a vacation from myself
I have no more patience to spare
I'm losing sight of who I am
​Pain, Sickness, Emotions becoming too much to bear.

A haze quickly descends to surround me
​The cold harsh reality stings.
Settling fog makes it harder and harder to see
​While sickness and doubts effortlessly cling.

Confusion trickles down my spine
​as I search for my reprieve.
​Nausea and pain overcome me
​Tears, visible and hidden, shed as I grieve.

​My body holds me prisoner
​Chains and shackles holding me back.
​Enclosed by walls of burden
Praying my stability doesn't completely crack.
​
I try not to be resentful
​I attempt to handle it in stride.
​I know that God's right beside me
Willing and ready to be my guide.

​He has His purpose, that I know
​And believe it with all of my heart.
​He never promised it would be easy
But I never imagined that it would be this hard.

Today I am writing as the green candle burns in memory of 3, possibly 4, deaths in our GP community yesterday. The candle represents our sadness as we say goodbye, but also a reminder that their memory will remain always. I choose not to post every death in our group as it's just become too many, too soon, too young, and too sad. However, if it's someone that I was more familiar with either because of advocating or had become "friends" on FB, I share because it's more personal.

​Each death I hear of, whether close or just an acquaintance, stings as it reminds me that no one is guaranteed tomorrow and it's a reminder of how many "friends" I have already lost. As a result, I have not been participating much in the support groups anymore. I visit the support groups less frequently. I admit, they are a great place to visit when you have an issue and you need to vent to someone that TRULY UNDERSTANDS what you're dealing with. They are also an excellent place to visit if you want to feel useful and actually help other people that are experiencing similar health journeys. Great friendships can be created because you're able to relate to so well. However, reading about others' struggles, feeling their pain along with your own, and wirtnessing so many that are literally starving or dying is sad and extremely difficult.  You don't want others or yourself to feel isolated and alone,  at least that is the case for me. At the same time, you don't want to become depressed, saddened, and possibly even sicker by seeing and hearing the same horrible news everyday either. It's scary to watch friends come and go (literally because of death).

​So what are you to do? What am I to do? Currently, I have decreased the time that I am in the support groups. In addition, I very rarely accept friend request from other GPers. It's not that I don't want to know them better or on a more personal level, that actually feels great. Instead I choose not to in order to help protect my own heart and emotions. I am so very thankful and have been blessed by discovering some phenomenal friends to help me along the way. These friends I will always treasure. These friendships I will never give up. But I'm definitely more reserved and cautious when forming new connections. Regardless of who dies in our community, it hurts. But being a name that I've seen around is not as painful as reading the name of someone that I had closer personal ties with, a friendship with. I've admittedly been distancing myself from others as I don't want to face losing more friends to this awful disease and complications that comes with it.  I've lost too many new friends that I was close to all ready and don't want to face even more. Which is sad because there are some amazing people in the world that I would really like to form closer friendships with. But at this time I have to deny myself the joy of building new friendships with fellow GP warriors to prevent the pain of losing more friends and creating more heartbreak.

​Which brings me to the question of what do I do when my "friends" on FB pass away? To begin with, I "unfriended" some of them after they died - but that felt wrong and disrespectful. Therefore, for now I just let them stay on my "friend" list. Which is okay, but odd at the same time. Especially when past posts and their birthday reminders reappear.