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 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.
Surviving life with chronic digestive illness is definitely not a desirable or easy task. To spend a few hours outside of the house, I’ll escape with a close family member, because they are appreciated, valued, and safe. They are aware of my illnesses and know the normal signs to watch for in case I need assistance or need to go home early, often before I'm ready to admit it.
Getting into the doctor and making it through a visit can feel like a marathon that I haven’t trained for. When diving into my current and most recent symptom lists and treatment plans, it can become exhausting and repetitive. Having an extra pair of listening ears, either one of my parents or my husband, can be extremely helpful and beneficial. Not only can they help express to my health care team what they witness, but they also are able to help me process what was said during the appointment afterwards.
I don't choose to “opt-out” of life. My approach to living life in spite of illness just looks different that what it used to and different than what "normal" people would expect. I don't always understand or comprehend how I am feeling or why I am having certain symptoms, and am aware that it can seem twice as hard for an outsider to comprehend, as well as for the me to accurately explain.
At times I do become quiet and withdrawn, but that's not always a bad thing. Sometimes, I’m being quiet because it is my true self, I'm not a talkative person by nature. I have always been more on the shy and reserved side. Other times, I may be quiet because I’m feeling miserable and don’t know how to, or can’t, verbalize what I’m actually feeling at the moment. It can often be hard for me to explain or answer a simple and common question, such as "How are you?" or “Is everything alright?” It’s just easier to give a simple ok or yes and brush it off than trying to adequately express my thoughts and symptoms. Often when I’m not feeling well, I choose to shrink back into my own world. This can be for different reasons. Sometimes it’s simply the best way to distract myself from the pain I’m feeling. However, I have learned from experience that hiding or withdrawing isn’t always the best practice, but sometimes it's the only coping strategy left to result too, especially when my other coping strategies aren't working effectively. I admit that I often avoid seeking help from other people, instead I try to depend on my faith, my individual strength, and my other coping mechanisms. Other times, I have no choice or run out of options. My continued symptoms, especially if constantly severe, may force me to rely on others and their aid, even though I try to avoid it if at all possible.
I don’t like to let people down and when I get the impression that I do, or from my perspective I think that I have let someone down, I feel terrible, especially if it's been happening often. An occasional let down here or there is tolerable and acceptable, I don't expect to feel decent every day. I'm aware that bad days are destined to occur from time to time, for me quite regular. At times, I do find myself battling the "Fear of Missing Out" mindset, especially in regards to unique experiences with my children. I know that it's just a matter of time before their age and their personal life, is going to interfere, limit, or remove the possibility of having the opportunity again.
Sometimes, I might need to spend time alone to re-energize, but when it’s due to a health flare, it’s not an enjoyable experience. Some of the activities I would normally do when spending time alone — reading, writing, watching tv, listening to music — are downright impossible when I’m feeling my absolute worst. As a result, the solitary hours can seem painful and endless.
I have learned to hang on tight to decent moments and treasured time with family, no matter how simple, as they are what helps me survive the sick times and remain hopeful for tomorrow. I've learned that there is nothing wrong with taking one day at a time. In fact, sometimes I have to focus on just an hour or few minutes at a time, and that's alright.
It’s important for me to have a small circle of people that I can depend on, that I can count on.
It can be easy to feel like a mess, maybe even a burden to those around me. It's also not abnormal for me to cope with difficult situations or try to be a protector (of self and/or others) by simply putting up a wall, or pulling up my drawbridge. (Earlier blog about that can be read HERE). Yet, when I truly take a moment to consider the trusted loved ones and caring people that I choose to surround myself by, I soon realize that they don't feel burdened or disappointed, but rather are just concerned and want to help.
In short, surviving and living with chronic illness is not impossible. There are positive moments and blessings along the way and a new appreciation for life that's often taken for granted can be gained.
"Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind." - Bernard M. Baruch
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.
As a family we went to a restaurant for me to watch them eat;
But hey, it was still nice to actually be out with my family.
Then we dropped the kids off at home,
deciding to attempt spending 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 aromas to fuel my nausea,
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.
Did I complain? No way.
I was proud of myself for actually agreeing to get out, even if it was to only be a spectator.
I wanted him to have a great night,
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 before 8:00.
Days of fatigue for me to overcome as a result.
What a disappointment and horrible wife I must be at times!
As a patient with chronic illness, I have had many experiences with doctors and medical staff in clinics and hospitals, as an outpatient and an inpatient. I have undergone countless diagnostic tests, witnessed doctors that truly cared and wanted to help, as well as met some that were dismissive or unwilling to listen.
My health issues and experiences have made me more knowledgeable with healthcare and health advocacy. I have an interest in learning more about health and patient care via social media, current research, medical articles, and even TV series or movies. Currently, I enjoy watching THE GOOD DOCTOR, MYSTERY DIAGNOSIS, and GREY'S ANATOMY. However, my favorite medical show by far is THE RESIDENT on Fox.
When watching THE RESIDENT, I find myself loving the characters of Conrad, Devon, Mina, and Nic. Why? Simply because they are in medical care for the right reason, to help and protect patients! Unlike other medical staff and beauracrats, they are not driven by greed.
I am well aware that everything in THE RESIDENT is not accurate, that the real world does not function exactly like the show, that lines are grayer, and it's not realistic to expect doctors to take the extreme measures that they do on the show. However, it IS refreshing to see light and attention being brought to some of the negative aspects of our healthcare system. There are a lot of things going right, there are many exceptional doctors and nurses hidden in the often cold money-driven healthcare field, but also many areas and qualities that need improving. We need care and treatments to be with the best interest of the patient in mind.
In regards to this TV series, I have thoroughly enjoyed watching all of THE RESIDENT episodes thus far, some watched more than once. It is a show that I eagerly wait for and actually stay up later than usual to watch. Yes, there are wonderful personalities, actors/actresses, and drama that aides in making the show pleasurable to watch; But the medical storylines and doctor-patient connections are what draw me in the most.
Last night's episode, Season 1 Episode 6, was especially intriguing and compelling for me, as it focused around a patient that I could really relate to.
(Beware: Possible Spoiler Alert)
No, I do not have the same illness as him, though I am aware of MALS since some online friends have had it. The emotions that he portrayed, on the other hand, were extremely familiar. I could feel the pain, frustration, malnutrition, and testing fatigue, that having a misunderstood or unfamiliar GI condition can create. The most captivating patient of the night, was a young man that was suffering an injury partially due to malnutrition. He was facing nutritional deficiencies as a result of a chronic digestive problem that made it nearly impossible for him to eat. (Hmmm, ends up being a different condition than mine, but oh so real!!!) Throughout the episode, his goal was to feel better, but he desperately did not want to return to being a test dummy. He had learned from his medical experiences over the past 10 years, that doctors had no idea what was wrong with him or how to treat it. Therefore, he was hopeless about getting answers for his digestive health and nutrition and just wanted to correct the injury, then return to his "normal" life of suffering that he had unfortunately become accustomed to.
YES!!! Finally, a TV show that demonstrates how patients sometimes have doctors - for years - that are unsure how to diagnose or help a patient that is literally starving from malnutrition! Like many other patients I know, his past doctors just left him to figure out how to deal with it on his own! Sadly, this happens ALL THE TIME in the Gastroparesis and Functional GI Disorder communities.
This GI patient was pleading to just be left alone. He no longer wanted to be a pin cushion. He had been one too long already, with no answers or relief. Conrad, the ER resident doctor, was determined to help him without dragging him through a lot of unnecessary tests. Not surprsisingly, all of the "specialty" teams at the hospital swarmed in with a desire to run all kinds of tests, most of which he had already undergone numerous times before. Of course, they wanted their own tests (not another hospital's results) and saw the money that could be raked in - not taking any time to consider what stress and pain, physical and emotional, that additional testing would create for a patient that had accepted, as much as he possibly could anyway, living everyday with malnutrition and digestive pain. Not to mention, the psychological ("all in your head") ideology that's often thrown out there as a possible reason when doctors don't have the answers. Surprise, surprise. Isn't that a common diagnosis when a doctor is unable to figure out or "cure" someone from a chronic misunderstood condition? Especially one that is invisible.
I'm not nieve. I am sure that doctors and/or nurses in the medical field will deny that some, maybe even most, of things in this show occur in real life. I'm sure that many pin point parts of the show that are "ridiculous" in a true hospital setting or possibly even humorous, just like I do when watching movies about teaching. As a patient though, this series speaks volumes. Every single day I witness, hear, and read about patients going through similar situations. In fact, I too have felt like a testing dummy with no answers or effective treatments, just test after test. It becomes frustrating, stressful, and tiresome. At times, I too have felt like completely avoiding ERs (or doctors) for any situation, regardless of how severe my symptoms are, simply because I have lost hope that anything can be done to help me. I am hesitant to even bother with undergoing further aggravating and undesirable testing. I, like many other GI patients, have to depend on trial and error, off label medications, in hopes of better controlling the symptoms with no end in sight. The majority of diagnostic test that chronic GI patients have to endure are not only painful, but often exasperate symptoms and create more discomfort or additional problems, yet provide no new ideas toward treatment. It gets discouraging and old really quickly. Sometimes you just want to be "fixed" and leave, as he did with his injury, regardless of the malnutrition or other GI issues that may be going on at the present moment. Regardless of the outcome.
As chronic patients fighting an invisible GI illness, our condition is often mocked or ignored. I thought it was great how THE RESIDENT episode demonstrated this by showing the other doctors rambling on, ignoring the patient's opinion or story, arrogant, and more interested in money and countless testing, rather than the actual patient. Doctors that are nowhere to be found when hell breaks loose as a result of the tests' side effects on the patient. (Yep, these type of doctors due sadly exists in the real world.) Don't get me wrong, there are some valuable tests that can and need to be done, but retesting everything gets to be ridiculous and unnecessary. Meanwhile, Conrad took the time to listen and respect what the patient was thinking and experiencing. He was able to take into account the whole picture for this patient, seeing him as a person and not a price tag or business deal. Conrad was authentic and only wanted to help the patient reclaim his life, without the continuous pain and malnutrition.
Conrad is the perfect, IDEAL doctor. He CONNECTS with the patient, RESPECTS his patients' need for QUALITY OF LIFE without pain, shows COMPASSION, LISTENS, and LOOKS OUT for his patients' bests interests. There is no "patient shaming" from him and for once the writers on a medical related show didn't portray the patient with chronic pain as someone searching for pain medication. (Not all chronically ill patients want or use prescription pain medications. Many patients, like me, actually avoid them at all cost, as they are aware of the stigma and realize how they can increase GI problems by slowing down the entire digestive system. Most of the ones that do require pain medications are just looking for some relief of some sort to get through the most painful times. )
So, in reality, are there any doctors that share the same desirable qualities seen in Conrad's character? Absolutely! I've been lucky enough to run across a few of them. Unfortunately, some of them are no longer in charge of my care due to circumstances outside of our control, such as moving. However, if given the opportunity, I would immediate run back and place my care in their hands as fast as possible.
Are all doctors going to be able to solve every diagnosis or find the perfect treatment plan, as Conrad does on THE RESIDENT? Not necessarily. But, as a patient, that CAN be acceptable when you are able to trust your doctor completely and feel confident that he/she is on YOUR team, searching for what's best FOR YOU, and not just interested in the profit.
Can you imagine the comfort and relief it would be as a patient if all doctors thought and reacted as Conrad does? To have doctors that make an effort to talk with you because they really want to HEAR about your health story and the impact it has on your life, in your own words, instead of just what your medical record states.
In addition to Conrad's character, Devon's character (the intern), is also learning the importance of protecting and LISTENING to HIS patients. The action of listening is often neglected, yet is so simple and so meaningful to patients, especially patients dealing with chronic illness and fighting for a sustainable quality of life. Yes, I know that there are time restraints, electronic medical record requirements, and physician burn out issues. There's extra "paperwork" or responsibilities behind the scenes that patients aren't aware of. But, physicians actually taking the time to hear what their patients are saying and personally dealing with can be invaluable! Listening, empathizing, and understanding patients as a way to save lives, what a novel idea! This is just one major improvement that the health care system needs to reform!
Personally, I will never forget the doctors that have been there for me. I likely wouldn't be here today if it weren't for a couple of compassionate doctors that took a moment to hear me, believe me, and respect my personal needs and quality of life. They will always be remembered and appreciated. Unfortunately, I've also had some that were set in there ways, couldn't admit that they didn't know how to help, or even placed blame on me - only to create additional issues, intensify symptoms, or make me have to deal with some issues much longer than necessary.
My ultimate goal is to find more dependable "Conrad" doctors in the health care system and on my personal health team, and less of the "arrogant profit seekers."
Anyway, I look forward to seeing what else THE RESIDENT has to offer in the upcoming episodes! I wonder what situations and conditions will be presented and portrayed? Who knows, maybe one day they will create an episode including functional GI disorders, such as gastroparesis or colonic inertia. Maybe awareness will be brought to enteral nutrition from feeding tubes, or an episode including patients with ostomies. I don't want or expect to see just the rainbows and sunshines, I want to see real issues with realistic treatments and responses. Will everyone be cured? No. Will it make people witness different medical conditions, procedures, and the positive and negative aspects of medical care? I sure hope so.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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