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!
Everything in life is a mystery developed by choices we make. Some choices come easily, others more difficult due to individual circumstances. How we choose to perceive our situation, which dreams we choose to fight for, which ones we allow to disintegrate, are up to us.
Sometimes walking (or running) through one door opens new doors while closing others. Choices we have before us today are not necessarily going to be an option tomorrow. Similarly, a different choice yesterday may not have brought us to the same place we are at today. Living in the moment, choices made right now, are actually the only control we have.
One of my current struggles right now is regarding how to best live, how to make the most meaningful choices, while also working within my health limitations. I grew up being told that I could choose to be anything I wanted. I tried to teach my personal children and elementary students that anything is possible if you just stay focused and work hard enough. I know that this can be the case for some, however, life just doesn't always work out the way that we intend or envision. Different cards are cast than we ever imagined. Sometimes these unexpected experiences may be positive, other times painful or confusing. Sometimes our experiences are a result of choices we personally made, sometimes they may be the result of following God's plan. I don't believe that we can ever entirely prepare ourselves for how we will handle all of the choices ahead. But instead, we must try to figure out where we are right now and where we foresee ourselves wanting to be. Choosing which sacrifices are worthwhile and which moments are worth living.
Right now, I feel as if I'm living in shadows. Daily, I am faced with the choice of determining when, where, and how I want to appear to others. Like a shadow, I am more visible on days when the sun shines brightly. Days when my eyes see clearly and recognizes all of beautiful blessings around me. Days when I feel warm, cozy, and comfortable with who I am and the direction that my life is going. Even on those days, my silhouette is all that may be visible, a dark outline or contour of the person that people would like to see or I'd like to be.
Living in shadows may protect me in some aspects, keeping me hidden, but can also hinder me from enjoying all of the great things life possibly still has to offer. As a shadow, I may appear present, but in fact it’s often just a faint representation of me on the surface. Though I may be seen, I'm not actually involved, at least not in the way I would like to be. My shadow is simply a dark patch poorly imitating my desired actions. A portion of my details, the specifics, the qualities that I possess are often missing or lost in the murkiness of shadows. Living in shadows can successfully shelter me from some pain or shortcomings. On "stormy" days, living in shadows helps me to disappear, protecting my family from witnessing too much of the undesirable me. Unfortunately, living in shadows can also lead to many missed opportunities and increased self-isolation.
My choice in the matter is, do I want to continue living in the shadows or step out in plain view? Am I brave enough to step out of the shadows and participate in all life has to offer, take more risks in order to accomplish more purpose and delight? If so, where and how do I draw the line between healthy and unhealthy decisions? How do I determine which risks are worth taking and which are too dangerous or unwise under my current circumstances?
I don't want to be just a reflection of myself, I want to be me. At the same time, I don't want to bring on additional storms for my family to witness and endure. I don't want to cause additional strain and worry on their parts or increased despair for me to survive, so is it more practical to just be the shadow on the wall?
Possibly my choice ultimately depends on my circumstances for the day, taking each choice at face value and considering which side of the battle I'm willing to accept. Which options are most tolerable and worthwhile; which options are too risky; which options are most desirable for me right then; consequently what kind of regrets, if any, will there be?
At the present moment, I try to make the wisest choices based on my emotional and physical wellbeing. The difficulty lies in complex choices, when I end up having to risk one to achieve the other. Admittedly, in retrospect, I don’t always succeed and many times end up facing more severe consequences than expected. However, that’s not uncommon in life, just more noticeable to me now, I guess.
Changes are coming and I can't deny that some are worrying and even scaring me. Over the past year I have worked really hard on trying to let my guard down. I have attempted to allow my drawbridge to open for others to come closer. It has not been an easy task for sure, but slowly and cautiously I have accepted and allowed other people to know me; to know not only how I appear and portray myself, but also the me I try to keep hidden. I have allowed a few to slowly cross over the threshold and witness a portion of my inner thoughts and feelings, both physical and emotional. These selected few were not granted access to my heart or mind until they earned my complete trust, and trust me, that is not always as simple as it sounds. A few have been caught along the edge, not by any fault of their own, but because I have begun to draw the bridge back to me. Fearing the unknown and being skeptical of what's to come, I can feel myself returning to defense mode, not that I ever felt entirely secure. I can feel instinct warning me to protect myself from harm. Warning me that I can't allow myself to be hurt any further. I can admit that this may not be the best decision, but for emotional sakes it feels like the only answer.
You see, instead of building a wall around myself, I envision it more as a drawbridge. Depending on my comfort level, my connection with someone, and the situation at hand, I adjust this drawbridge. God is the only one that is granted full access 24/7. Everyone else is granted permission based on who they are, why they want to be here, what harm is possible, and even how I am feeling on that particular day. The purpose of my drawbridge is to help control and minimize pain, misery, trouble, and heartache. It is suppose to help strengthen my defenses and protect my vulnerabilities. But it's not perfect; I do make mistakes at times. Unintentionally, I sometimes stall or even deny access to some really great people, people I love, people that I respect, people that I should trust, people that could possibly make a positive difference in my life, if I'd just give them a chance. Confusing, right?
Let's see if I can clarify. Over the past couple of years, I connected and created friendships with some phenomenal people I met online as a result of my health. Together, we share our similar health experiences and journeys, as we can relate to each other so well. No one else in my life knows the complete truth of how awful I often feel or the severity of my illness-related symptoms. Symptoms I was trying my best to cope with independently. However, my new friends could/can relate. I was no longer alone. I found friends that I could talk to because we could understand each other plight. They, too, were/are courageously experiencing and enduring some of the same struggles as me. Our friendships were/are invaluable, needed, and appreciated. Though I still have friends that I connect with online, and a few that I've chosen to remain very close with, I have found that I'm distancing myself from becoming closer friends with others. Why? Because too many of my close GP friends have died and others are currently fighting for their lives. That pain hurts!!! I don't even know how to describe the heartache it causes. In an effort to protect my body and mind from the sadness, I find myself closing my drawbridge. Isolating myself from others that understand, simply because I no longer know if I have the strength to witness & deal with sickness and death over and over again.
Friendships are not the only relationships being impacted. In the past few months, I have been more honest with how I feel medically and emotionally with my family and medical team than I EVER have before. Heck, I've been more honest with myself as well. It's been a slow journey as I slowly and carefully decided how secure they made me feel. Some days I've been more guarded than others, but for the most part I've been learning how to be more open. I recognize the value of having my family and medical team more aware of what I'm actually dealing with. But for some reason, this transparency doesn't come easily. No matter how open or to what level I desire my drawbridge to be extended, it's always angled with guards on standby ready to raise the bridge at a moment's notice. The past couple of months I've allowed the drawbridge to slowly open further and further for my family and medical team. Unfortunately, after the recent news of a undesirable change coming in the near future, I'm reluctantly fighting the guards. I don't necessarily want the bridge to be unpassable, but it appears to be automatic. I'm aware that I need others including my family, friends, and doctors to understand my health in order to best help me. I need their assistance in managing my lifestyle changes and aide in searching for effective improvements.
Nevertheless, I can feel the drawbridge closing in around me in an effort to protect the inevitable. I don't want to withdraw or detach myself from others, but starting over scares the hell out of me. I'm exhausted in every way imaginable and literally just tired of retelling my story to medical providers. I don't feel like revalidating myself and health issues again. I already have a hard enough time finding the right words to accurately explain my current issues. Starting over and trying to catch up new medical professionals on my health history just takes too long and is frustrating, especially since they'll never understand anyway. So why even waste our time or my precious energy?
I have no ill feelings toward anyone on my medical team that has to leave in order to fulfill their own individual goals. It saddens me, yet I completely respect them for pursuing their personal dreams and plans for the future. I just want a medical team that's able to "get me" and truly "see me" the way my current medical team does. My current team may not have witnessed the beginning of my health journey, but they have witnessed enough to recognize when something is wrong and are familiar enough that I don't have to continue restating my health history.
To be honest, right now I'm uncertain if I'm even capable or willing to lower my drawbridge enough for new people to join me. I'm honestly not sure that I want to take the risks anymore. I've been so fortunate with the healthcare I've been receiving, that it has to be only a matter of time before I begin to have negative healthcare experiences again. And that I can't handle.
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.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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