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
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.
I'm curious to know how others that routinely have doctor's appointments best prepare themselves. Personally, I often find myself conflicted with various emotions. It seems like the times I need a doctor's advice the most, need their intervention to survive an unexpected scenario or types for ending a severe "flare", etc.. the scheduled appointment seems to be so far away; Almost like it can't arrive soon enough. However, when it is time for the actual follow-up appointment, I sometimes wonder if it will end up feeling like a waste of time and energy, even if in reality it's not.
I'm sure you know how it goes, similar to car problems. The issue persists until you take it to the mechanic, and then for some reason the problem seems to disappear, at least while it is with the diagnostician, only to reappear soon afterwards. I think our bodies work that way at times as well, at least mine does.
Next week, I have an appointment with my current gastroenterologist. There have been numerous times that a January appointment seemed like a lifetime away. My health has been through quite a bit the past few months. My body has been out of whack, symptoms have been unpredictable and crazy, multiple ER visits have occurred (and believe me, I avoid the ER like it's a plague), and a hospitalization for central line and bloodstream infection (bacteremia) was required. I had to have my PORT removed and currently have a PICC line placed in order to continue my IV hydration at home. Just yesterday, my Home Health nurse had me return to the ER once again, this time for an occlusion in my PICC line. In short, I have had plenty of situations where seeing or talking with my current GI about my condition may have been beneficial.
So what's the problem, right? I mean, now the appointment is just a few days away. I will have an opportunity to talk to her about everything that's been going on and get her insight.
Well, unfortunately, it's not that easy. Some of those issues are behind me now, so what's the point of continuing the conversation regarding them now? There is no "cure" for the continuous symptoms. My doctor did not observe or witness the strife that I was experiencing, has never witnessed one of my challenging times, and words just do not do justice at all. There's no way that I can possibly make her adequately understand what I have been through recently, or in the past 4 years, for that matter.
Realizing this, additional worries can arise, because how can I expect her to help me if I can't effectively convey to her the challenges that I face? During my appointments, I often "appear" stable or okay. In ways, I may be at the moment. The reason being, I hate taking chances at feeling too poorly away from the house. I take it easy days in advance and decrease my symptomatic risks by strictly avoiding drinking or tasting anything, as it may elicit an increase in symptoms. I mean, honestly, who wants to be extremely nauseated, heaving, or in pain at any time, but especially when on the highway or stuck in medical waiting rooms? I know that I don't want to.
The bad part is, being extra careful and avoiding symptoms, as much as I can possibly can control them, limits what my doctor actually sees, which in return can make it harder for her to understand and provide treatment. It can be counterproductive, for sure. However, if I allowed myself to have a more typical day, along with "normal" daily symptoms, I'd feel absolutely miserable and lend myself to vulnerabilities of being misunderstood as well.
So here I am, concerned about how my appointment next week will go. Will I be able to accurately communicate my health needs and concerns this time or will my concerns be misinterpreted? Fact is, unless you live it, there's no way you can completely empathize or comprehend the impact that being sick day after day has on one's quality of life.
The goal for me is to attempt to explain my chronic symptoms in a way that might help. Maybe we create a plan on what to do about my home hydration: whether to keep the PICC for awhile or try another PORT. Hopefully, this appointment will be productive and worthwhile.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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