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.

I do NOT write for sympathy. I do NOT seek sympathy from anyone.

I do NOT write for attention. I do NOT seek attention from anyone.

I simply write to record and process my personal experiences
and post in the off chance that they may help someone else.

I simply strive to discover a better quality of life;
to figure out a way to help my body feel better while living with illness.

If you do not understand and accept that,
then step out of my way, taking your false accusations and judgements.

​The morning was fairly normal, 
when compared to my normal at least.
My fatigue and nausea, more pronounced,
but in my experience they are always a beast.

I rode with my son on an errand
looking for where at his school he's to park.
Not knowing what lay just ahead
was my body preparing to spark.

I infused my regular lactated ringers
using my PICC line, like every other day.
Fueling my body with needed fluids
to keep my dehydration at bay.

But hiding beneath my skin
were embers that were no longer dormant.
Out of nowhere chills overcame me
with pain in my legs a boiling torment.

The internal blaze combusted
My body radiating such heat.
Intense freezing yet also burning
Fever scorching over 103

Unable to sit still or even to walk
I was in such tormentuous misery.
An infection was clearly simmering,
uncontrolled wildfire burning within me.

I tried denial and avoidance
For at home is where I wanted to stay.
I didn't want another line infection
My mind unsuccessfully tried to will it away.

But, my family saw through my anguish
urged me to get promptly checked out.
Sluggishly I made my way
for another hospitalization, no doubt.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"I know my storms are not over, but I also know that my God is faithful. With every storm, there will be a rainbow. What an awesome God we serve! Just when we think we have had all we can stand, the clouds break and the sun shines through. It's as if God is sending us a hug, to encourage, strengthen, and bless us on our journey."
(30 Days of Hope for Strength in Chronic Illness by Elizabeth Evans )

How fitting this quote is! As I was riding down the road, with my kids in the back and my dad driving, I came across these words in the book I was reading. I stopped and reread the quote to myself, taking it all in, before I shared what I had read out loud. 

God is Great! God has so much Love and Grace for each of us, every single day! Life is not perfect for any of us, some roads are trickier and bumpier than others, but we all have obstacles that we will face. I feel like I've been through the ringer physically, emotionally I have been pained, and mentally I have been exhausted. But through all of this, no matter how it feels at the moment, deep down I know that I am not alone! God is with me every single step along the way. I may overly doubt myself and mistrust others, but God is loyal, loving, dependable, and constant. 

The devil tries his damnest to bring me down, to help me cast negative judgements against myself, and attempts to make me feel like I'm running solo down a path of pain, sickness, and heartache. 

But GOD is UNSTOPPABLE. HE pulls me through time and time again. 

The past couple of weeks my fear about an upcoming trip was becoming louder and louder, almost causing me to freeze and cancel. I wasn't expecting to feel "well" for the trip, but became fearful that it was going to be too much on my body. My husband tried to warn me, make me rethink my decision. But I held steadfast. I put my Faith and Trust in God that the trip would be not only memorable, but positively treasured. Physically, I was expecting to have my normal symptoms and illness related restrictions and challenges, but mentally and emotionally, I needed and wanted this trip. 

You see, this was the first vacation that I would be partially sharing with my children, my dad, my brother, his wife, and my adorable little nephews. I, personally, have never been on vacation with my nephews, who are 4 and 6. The weather was perfect with nice breezes and little/no humidity. My family was so accepting and mindful of my personal needs. Early on we saw how easily my body would give out on me as we walked from the parking lot to the museum. But my family didn't let it bother them at all, which kept me feeling comfortable and at ease. My afternoon and evenings were spent at the hotel running fluids and relaxing, while they did other things together - such as swimming or walking around the town. My dad and son even went on a ghost walk together. My kids stayed up late with me to make sure I didn't fall asleep while running my IV fluids since my PICC line wasn't cooperating at all! When I was out with them, I was in a wheelchair/scooter, kept in the shade, or sitting in the AC of the car while they explored some of the sites we stopped at. No pressure, no judgements, and no expectations were placed on my body or me. I was truly able to enjoy and live in the moment, carefree of what anyone other than my family and me thought.

We had fun! My nephew took charge of pushing me in the wheelchair as he enjoyed it so much! Must admit, he made the ride very interesting. The sickness I experienced was typical, the recovery period a little more than expected, but the experience of this vacation was oh so worthwhile! We all enjoyed the vacation and the memories from it will most definitely remain for a lifetime!

I believe that God knew I was in desperate need of some encouragement and motivation, so HE ensured that a comforting "rainbow" was sent to me during the "storm" in the form of a wonderful vacation. My body may take time to refresh, but, emotionally my heart and mind was rewarded.

Look at the outer me, 
really look! 
Do I look fine, to you?
In some ways I am fine,
but not fine as well.

Moving around the house,
tube feeds for nutrition,
IV hydration, 
Couple sips or spoonfuls here or there.
So yes I may be fine,
​But not fine as well.

Do you see what's beneath the cover,
what's in my soul,
the scars upon my body,
physically and deep within?
Yes, I may be fine,
But not fine as well.

Have you experienced my pain, 
my nausea, or constant fatigue?​
Silently trying to avoid outsiders
from seeing my inner struggles.
Yes, I may appear fine,
But not fine as well. 

Have you ever given up, 
not wanting to bother talking to a doctor?
Already knowing there's no relief to be found,
no new way to describe or explain.
Yes, I may act fine,
But, I'm not fine as well.

So when you see me
smiling, laughing, joking, loving
Know that I'm also
crying, struggling, pretending, trying.
As sometimes I may be fine,
​But, also not fine as well. 


​
​

Mystery Evening, hazy and blank.
Hour or more simply forgotten.
Apparently watched TV and conversed with kids,
while snacking on Italian Ice, they thought I was alert.

When all of a sudden, my words and actions were slurred. 
They couldn't understand a thing I was saying,
and noticed when standing that I was weak and unstable.

Kids told me the following morning that they had been worried,
especially when they witnessed me weak, confused, and jittery.
My daughters had called my son in to help, 
scared that I'd fall since I wouldn't stay in chair as instructed.

The following morning
I tried to reflect on the night prior,
How could I be present and semi-normal with my kids,
while having no recollection of the evening at all?

​

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."

​

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.

How do you have a date night,
when you live in a small town where everything revolves around food? 

Trying to be a "good" wife,
by spending a couple of hours with husband away from the house.

Aware that my energy is sparce,
that at any moment my symptoms and fatigue may become intolerable.

So what did we choose to do on our night out together?

As a family we went to a restaurant for me to watch them eat;
But hey, that wasn't bad because it meant that I didn't have to cook,
and it was nice to be out with my family.

Then we dropped the kids off at home,
deciding to spend some 1 on 1 time together.
I honestly can't remember the last time we went out, just the 2 of us.

But remember, we are in a small town. 
So we went to the Ale House for him to have a couple beers.
It was completely dead and from my standpoint, boring. 
Beer, hotdog, and pizza aroma to fuel my nausea,
but kept opinions to myself, as I honestly wanted him to enjoy a night out.

He finally decided that he would rather go somewhere else.
We left after he had 1 lonely beer.
Next stop, a local restaurant with bar. 
This time there was the option of beer and chicken wings.
Fun right? (full of sarcasm)

Our night literally consisted of me smelling food and watching others eat and/or drink.
At least the ACC basketball tournament was on the bar's TV screens!

Did I complain? No way.
I was proud of myself for actually agreeing to a date night, even if it was to be a spectator.
I was happy for my husband to have a chance to spend some time with me away from the house.
Just had to deal with boredom and the constant reminder that I am no longer "date worthy".

I wanted him to have a great night,
however,
he was left snacking and drinking by himself as I simply just sat and watched.
The night ended early on account of me, 
back home and in bed by 8:00.
Days of fatigue for me to overcome as a result.
What a disappointment and horrible wife I must seem at times!

I wanted my 40th birthday to be not only memorable, but also meaningful. Therefore, I chose to use Facebook as a way to raise money for IFFGD. 
(International Foundation for Functional GI Disorders) 

You can still participate by donating HERE.

This fundrasiser was done in honor and memory of those impacted by GI disorders such as gastroparesis, colonic inertia, pelvic floor dysnersia, achalasia, reflux, and more. I promised to let my kids slime with me green goo on Facebook Live if we successfully raised $400 or more. Since the goal was met, my mom and I were slimed. Click here to see the video. 


​Learn more about IFFGD at their website: https://www.iffgd.org/​

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!

  Christmas this year went as well as expected.
   Time with family and well-loved traditions.
   New memories created, authentic joy discovered.
   Symptoms, pain, nausea, sickness still present.
   My body over-exerted, pushed to the max, but
   all with the understanding that I must make the 
   most of each moment, as the season would be 
   passing so quickly and time to recover would be 
   just around the corner. 
   Patience was a virtue, as my family and I 
   ensured that preparations were made to make 
   Christmas as calm, relaxed, and stress free as 
   possible, while not taking away from the precious
   moments we were blessed to have together. The 
   week following, was also left low-key,
   allowing my body the opportunity to recuperate.
   I must admit, I was not expecting fatigue to linger so long,
   but all in all, this Christmas was memorable and cherished.