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?
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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! I am not a patient that likes to complain about my medical care. I pride myself in being a knowledgeable, respectful, and easy going patient. However, in certain circumstances, I'm left with no other option, such as this case. After the lack of appropriate care, in fact, being placed in a dangerous and risky predicament, I wrote the following letter to my hospital president with the goal of making them aware of the negligent care they provided and hopefully prevent a repeat in the future for others or me. (This was not the same hospital that I usually visit. All names have been omitted.)
I am writing to you in regards of treatment, or more specifically lack of follow-up, from the -------- Medical Emergency Department in --------- and/or the area of the hospital responsible for lab cultures and follow-up contacts. I am complaining, as you will see in the description below, that I, the patient, was NOT notified al all from -------- Medical about Positive Blood Cultures (Klebsiella Pneumonea) being obtained from my central line (PORT), even though I had been experiencing related symptoms and have increased risks of infections due to my health, PORT, feeding tube, and ileostomy. As I am sure you already know, bacterial infections in central lines and in the bloodstreams are not to be taken lightly. At a moment’s notice, the infection can cause chaos within the body, increasing in severity extremely quickly, often leading to death. As a patient with chronic illness, I have sadly witnessed numerous friends in my online support groups, passing unexpectedly due to sepsis. Knowing this, I am very disappointed and even outraged that a positive culture didn’t lead to a phone call or notification. My goal in this complaint is not to have anyone fired, but do believe that whoever was responsible for not following through on what should be basic protocol, should be reprimanded and made aware of the dangers of their lack of attention. Whether it’s being educated on the dangers and specifics of PORT infections or new protocol measures, something should be done to keep this from happening to others. I was very fortunate, my primary and I were persistent in receiving a copy of the actual culture results (which should have automatically been brought to our attention) and able to begin the appropriate treatment before the infection intensified too much. However, we can’t deny the fact that my health was put at an unnecessary risks, being that nobody ever notified me or him. I would appreciate a response to this complaint, in writing or by email, informing me of what actions were taken, if any, what your hospital procedures are regarding blood cultures for possible central line infections taken during emergency room visits, and an apology for lack of notification. I do not take my health lightly, understand that mistakes happen, but also deserve to feel as though my family, friends, and I have a competent medical center/hospital, nearby, that takes patients’ lives seriously and responsibly. I am attaching more specific details below, as well as related medical reports. (For privacy reasons, not sharing medical reports on blog.) More specific details regarding treatment on Nov 22, 2017 & symptoms leading up to.. Prior to the date of my complaint, I had been in search for answers. On 11/18 I visited ------ Medical ER. I have no complaints about service for this visit, though in retrospect I wish the PA or I one had elected to pull blood cultures. Had had, vomiting spell night before, rough night, awoke to migraine, abdominal pain, and intense nausea. A few hours later, while running IV fluids for day, body all of a sudden went haywire. Sitting on couch, out of blue, constant severe pain, intense rigors, and horrible cramping/spasms running down both arms, legs, abdomen, chest, upper back, and neck. The pain was excruciating and I was unable to get still or in a manageable position. Definitely off of the rating scale, no question about it, but decreased to tolerable levels by time I was seen by the PA. My arms and legs began feeling tingly and numb, my home blood pressure at that time was 95/58 No fever. Diagnosed by PA as having myalgia. That evening, fever began, highest I recorded was 101.9 - went to ----- ER and told possibly flu like illness (negative for flu). Left with directions to alternate tylenol and motrin every 3 hours. Once again, in retrospect, wish we had pulled PORT/blood cultures but still first day of symptoms. 11/19-11/21 Symptoms continued, tried to wait them out, telling myself that I had already been to the ER twice with no answers/reasons except possibly viral illness that would take time to heal. Suffered intense spells, rigorous chills, off the chart pain. Sweatsuit with heating pads and heating blankets on high, as well as blankets and tears did NOTHING to help. Kept feeling weaker and weaker. Eventually, contacted PCP on 11/21 about extremely severe attacks with pain all over body, extreme nausea , migraine, shivering chills, chattering teeth out of nowhere. I was still wrapped up in hoodie, with neck and head pain, heating pad on legs and heating blanket also on High wrapped around me completely wiped out. I told him that I didn’t understand what was going on but wasn’t getting help or answers because labs appeared ok (or near range) and the severe indescribable attacks were in unexpected spells with lingering achiness and seemed to be linked with IV hydration via my PORT. His response: Possibly could be flu like, but also concerned that it could be an infection in my PORT as bacteria in bloodstream causes the exact same symptoms that I was experiencing. He urged me to immediately return to the ED if I had another episode as bacteremia can be very serious. On Wed 11/22, after continued symptoms and another off the chart episode, I did once again attempt going to the ----- ER. This time to have cultures run, as suggested by my PCP, to see if I had an infection in my PORT or bloodstream. (As a patient with a PORT for home hydration 5 days a week, a GJ feeding tube for daily nutrition, and an ileostomy - I am considered high-risk for bacteremia.) The pain felt too intense to travel any distance, even making it to the car was a challenge in and of itself. By the time I was finally seen in the ED, my symptoms had become more tolerable. ONCE again I tried to explain everything that I had been experiencing. The migraines, the pain, shivers, etc…. I shared my concern about having a possible PORT infection as the most severe symptoms seemed to intensify while running my IV fluids. I specifically asked to run blood cultures. Cultures were taken from my PORT, they did not take any peripheral cultures (from my understanding it's usually protocol to take both, so as to determine if the PORT is infected or the bloodstream too). I was diagnosed with a UTI. When discharged I asked for a copy of my “routine” labs, was told that they had no concern of an infection but would be contacted if it did come back positive, though Dr ---- expressed to me that he believed everything would come back fine. Upon returning home, I looked at my complete blood count and chemistry report from 11/22, I noticed some labs being out of range, but nothing too alarming, except my procalcitonin. I had never heard of procalcitonin before. But reading the report it said my procalcitonin was 6.26(c) which is high considering that the normal range is supposed to be 0.0 - 0.05. Underneath the result was a reference table that stated anything greater than 2.0 = systemic infection (sepsis) is likely, unless other causes are known. 11/25 I continued to feel absolutely dreadful, but took the keflex pills as ordered for the UTI Dr ---- diagnosed me with. Thinking maybe it was just an awful UTI making me feel so awful (even though I had NO UTI symptoms.) I did contact my primary (he is in -------) to tell him about the continued symptoms, what Dr ------ had said about scheduling a follow-up in one week to make sure UTI had cleared, and to make him aware of the procalcitonin level of 6.26, since that was a lab that I was unfamiliar with. I also told him that Dr ------ told me I would hear back if anything actually grew in my PORT culture or if urinalysis culture showed that a different antibiotic was needed for the UTI. As of Sat, Nov 25 I had NOT heard anything back from my Wed Nov 22 cultures, so I was trying to take that as good news. I was still feeling awful and knew something in my body was not right! But also hopeful that the keflex would help. My PCP was concerned over possible bacteremia (serious blood infection), so we were both trying to be vigilant to get our eyes on the actual culture results. My complaint begins here, after being discharged from the ED, due to the lack of follow up for positive culture results. (I'm not sure who the responsible party for making these important follow-up contacts are, that's where I need your help.) 11/27 (Monday) I personally called -------- Medical to find out what my results from Wed cultures were. I wanted to be sure that the line cultures were negative (as something was telling me that it could be an infection) and I wanted to make sure that the Keflex antibiotic that they prescribed to me in fact did match with my urine cultures. It took calling the hospital 3 times, playing the runaround game, being placed on hold and transferred to someone else over and over again until I was finally heard something. I was rudely told that if I hadn’t heard anything that I was fine. That ------ or ----- would have called if my results had come back positive, that if I had not heard back then they were negative. (Really? In retrospect, that is not what happened in my case.) After that phone call, I figured that it was going to be a waiting game and that with time my symptoms would resolve. According to ----Medical, nothing else could be done to help me but waiting it out. On Tues, 11/28 I contacted ------- Medical Records and requested that they send a copy of my records, labs, notes, and cultures to my PCP for my ED visits on Wed 11/22 as he had still not received any paperwork. 11/29 PCP let me know that ------- sent records to him, but did not send the culture results that we specifically asked for, which were the most important part that he needed. Again, I called ----- Medical records, she was polite and apologized, and said she printed it off this time to make sure the cultures were there and was faxing it at that moment. Thurs Nov. 30, my PCP let me know that he STILL didn’t have a copy of the needed cultures. I personally went to ------- Medical myself to pick up the actual copy so I could ensure that my primary received the cultures. Upon reading the results, I immediately read that the cultures were POSITIVE, yet NO ONE had bothered to attempt calling me or contacting my PCP to let either of us know. The culture was growing Klebsiella Pnuemonea! Did they not realize how serious even life-threatening, having a line infection could be? By the time I got home, while in the process of contacting my PCP, his nurse called and said that my PCP had just received the cultures and that it was indeed positive. I was instructed to be seen in their ER, take my culture reports with me, and would need to be admitted for IV antibiotics and new cultures as this could become extremely serious, possibly even leading to Sepsis, which can also lead to death. Talk about frustration, overwhelming fear, and confusion. Why would ----- have not let me know about these results so I could have been notified and begun treatment earlier? Why were they willing to put my life at risks? Hell, according to the paperwork I picked up on Nov 30, ----- Medical had the POSITIVE results on Sat Nov 25! I called them on Monday the 27th to ensure that the results were negative and was given the run around and eventually told that if I had not heard anything then the results were negative. Well, we found out that this was not true! My results were in fact positive, I was symptomatic and had increased risks for bacteremia due to my central line, and no one let me or my primary know anything! It was Thursday Nov 30th, over a week after cultures were taken, after persistent attempts from my PCP and me, before we were ever able to find out the truth! I should have been admitted and receiving IV antibiotics the very day they found out that my cultures were positive. But no, they were willing to let me go without any intervention or help. Without any notifications. What if I had become septic, faced organ failure, or worse, died? Any of which were possible, because they did not take my health seriously, simply because they didn’t take the time to tell me that I needed to be started on IV antibiotics to kill the bacterial infection that was present in my line and come to find out (after admitting hospital took peripheral cultures) in my bloodstream as well. ------- Medical was negligent with my care and treatment due to lack of follow-up. ------ Medical was responsible for my care and should have contacted me immediately after seeing that the cultures were positive for Klebsiella Pneumonea. My primary guided me in the direction that led me to correct diagnosis and assistance. He easily could have let things go as well. He stepped up, where ----- MEDICAL FAILED me! Somebody dropped the ball at my expense, which is exactly why I am filing this official complaint. On Nov. 30, after learning my culture results from the actual copies that I requested, I did in fact follow my PCP’s advice and visited his ED. They took cultures of my PORT line as well as 2 peripherals from my arms, admitted me for IV antibiotic treatment of Rocephin, removed my PORT on since all cultures from PORT and arms came back positive for Klebsiella Pneumonea, and eventually placed a PICC line before discharging me later the following week, with the remainder of my IV antibiotic and a few days of oral antibiotic (Cipro) following the conclusion of my IV treatment plan. The purpose of my complaint is for ------- Medical to determine who didn’t complete their job effectively, who did not follow up and contact me about the possible life-threatening results and need for IV antibiotics. I want to prevent the same thing that happened to me at ----- Medical, from happening again to someone else or me. The next time, the patient may not be so lucky, and may suffer severe consequences, or even death as a result of someone not taking a couple of minutes to make a very important and simple phone call. Thank you in advance for your prompt investigation into this matter, ------------------------------- Afterthought: *Did sending this complaint accomplish anything? I don't know, possibly not, but it did allow me to have my say. Maybe, just maybe, it at least brought the issue to their attention and made the responsible party aware and reprimanded. Supposedly, according to Chief Medical Advisor, protocols were changed to alleviate and improve their policies to prevent this from occurring again. I know that his comment was likely just hot air, but hopefully, it did make an impact. Giving my all, trying to find peace and grace within myself, searching for a better sense of my identity, striving to portray myself authentically while being true to my desires for life. Giving my all, discovering ways to feel useful, pursuing ways to grow spiritually, using experiences to strengthen relationships, while hopefully providing comfort and support to others. Giving my all, seeking ways to physically feel better, scrutinizing possible reasons for recent deterioration, reaching out for medical help despite reservations, while attempting to trust all medical advice given. Giving my all, writhing from unexplanable relentless pain, shivering and shaking from unyielding chills, crying out for something, anything, to make it stop, while praying that answers and relief would soon come. Giving my all, soliciting answers for the cause of my symptoms, patiently suffering in agonizing pain, heaving and vomiting with head pounding, while no one seemed to have a solution. Giving my all, confiding health concerns with my primary, wishing he could offer much needed assistance, graciously accepting his opinions and suggestions, while struggling to keep myself together without complaining. Giving my all, requesting records and cultures from an ED visit, making every effort possible to get copies to my primary, venturing out to get my hand on the actual results, while frustrated over the ED's lack of concern. Giving my all, secretly hiding my fears from family, relying on my primary to finally find some relief, following his orders to visit yet another ED, while completely feeling drained and depleted. Giving my all, preparing best as possible for a hospital admission, talking with my respected and reliable confidant, gaining control of my emotions and angst, while knowing I was about to be under the care of unfamiliar doctors. Giving my all, surrendering myself to their needles and tactics, relinquishing control to them and their treatments, repeating my health story again and again, while gaining confidence that the worst was finally going to be over. Giving my all, appreciating the doctors and nurses willing to help, acknowledging the blessing my primary has been, recognizing the importance of reaching out for his support, while gladly welcoming an end to my bacteremia chaos. --------------------------- Not sure what I would have done if it had not been for my primary stepping in and guiding me in the right direction. I knew something was not right with my body, feared that it could be an infection in my PORT or bloodstream, but couldn't get any answers or relief. After three separate ED visits, all within a couple of days span, I felt like I must be going crazy. I started doubting how much longer I could handle or deal with these horrifying symptoms. However, my primary communicated with me, believed my agony, knew that I typically avoid emergency departments at all costs, agreed something was definitely going on, predicted it could possibly be a bacteremia infection, remained persistent on seeing actual culture results himself, discovered I had klebsiella pneumonea infection in my PORT and bloodstream from the most recent ED visit's cultures, informed and prepared his ED team of doctors for my arrival, and ultimately ended this tormenting experience. My PORT had to be removed, a PICC line placed, and IV antibiotics for days during my hospitalization, but, I was so thankful! The medical team that took care of me was great and a new sense of comfort was discovered. Now I am aware that I do indeed have a primary that I can depend on. Moral of this experience: Trust your body! You know yourself better than anyone else. You shouldn't be afraid to reach out to your doctors in times of need. If you are not improving, don't try to sit back and ignore. Listen to what your body is saying and take action. It can literally be the difference between life and death sometimes. Luckily, the infection I had was treatable and not resistant to antibiotics. If it had continued to go untreated, it would have likely increased in severity, leading to possible sepsis. Sepsis can lead to organ failure and even death. A reminder of just how important and essential it is to have a doctor that you can trust and communicate with. Having a doctor that's invested in what's in your best interests is a valuable asset never to be taken for granted.
Living with chronic illness is a full-time job, a volunteer career all on it's own, but it should only be a part of one's life. A rather large part of me believes that I should be so much more than what I currently am. The inner me, my spirit and soul, often feel irrelevant, meaningless, and unsuccessful. At times it feels as if my only purpose in life is to be a mother, which is the most amazing unexplainable blessing and miracle all on it's own, but is that really all that I can pr should be? I just don't believe that this is the case for me. Possibly, JoAnn LeMaistre's words explain how I feel best - "She had to come to realize that she need not stop growing as a person because of her illness. She knew that she had to coexist with pain and physical limitations, and not let it always dominate her life or self-definition." Does or should being sick have the authority to make me feel like nothing? Absolutely, not! So why is it that I sometimes feel inadequate as a person? Why is it that I feel as if my role in society has diminished since being ill and having to focus on setting my health needs as a priority? (After family and God, of course!) I am confident that I am doing all that I can, to manage my physical health needs, with the exception of expecting or pushing my limits too far at times. But, discovering meaning and purpose in my life, which is critical for my spiritual and emotional health, requires that I explore my inner self in more depth. Here is where it gets very tricky for me, as I have a tendency to be very critical toward myself, harshly judge myself, and unfairly set myself up for failure by trying to reach unreasonable expectations based on my pre-illness self. You would think that I would have learned by now, but I must agree that I can be rather hardheaded and stubborn. I'm in no way saying that I shouldn't have expectations, dreams, or goals to achieve. Instead, I am saying that I want to view myself differently. I hope to learn how to develop more patience toward myself, more acceptance for myself, better able to forgive myself, and no longer blame myself for things, such as illness, that are outside of my control. In other words, I desire to to see myself through the eyes of God and Jesus. I long for personal grace and truth, based on God's image. According to Dr Henry Cloud, "Grace when it is combined with truth, invites the true self, the "me" as I really am, into relationship." In other words, I intend to discover emotional and spiritual maturity within myself, while coming to terms with my true sense of self. According to Julien Seifter, "Most authentic growth depends not only on intention and effort but also on opening yourself to what has happened to you and letting experience change you." See the thing is, I know people who consistently blame me for their problems, criticize my choices, and discount my feelings are toxic to my self-esteem and damage my self-image. I admit that I have not done well at eliminating toxic people from my life. I have also noticed that with chronic illness, as struggles have overwhelmed me at times, my thoughts have betrayed me by adding toxicity to my own perspective of me. I guess this is more apparent to me now, as pain and suffering seem to have a way of bringing my strengths and weaknesses to the surface. Hence, I want God to help me be different, for Him to work inside of me to help me see his vision for me. In Micah Tyler's lyrical words, "I don't want to be stuck in a pattern" anymore. The truth of the matter is that my life is more difficult than I could have ever imagined, but it also has the capability to be far more richer than I could ever dream. At least that is what I'm counting on and hoping will happen as I strive to grow spiritually and emotionally, alongside my journey with physical illness. The question is how do I achieve it? How do I use my experiences and knowledge to grow and shine to my greatest ability, in a way that will make God proud and help me feel fulfilled? I believe the first step is to determine who and what adds the most meaning to my life and invest my energy and time in those relationships. What are those you may ask? This, I actually can answer quite easily: God, family, self, and teaching/helping others. I have been investing energy in my physical health with medical interventions and appointments, while also working diligently with my psychologist on better understanding and coping with the impacts of dealing with chronic illness (it's symptoms and impact on my quality of life) on a daily basis. In Julien Seifter's book, it is stated that "A doctor like a psychotherapist can promote a playful loosening of old ways of thinking and feeling and encourage a patient to open her mind to possibilities. A doctor can help a patient grow through time." I have found this to be true for me. My medical team and I continue to adjust medical treatments in an attempt to help my condition become more tolerable, since there is no cure to make it go away. My previous gastroenterologist and my psychologist, have both encouraged me and made me realize that I can still search and expect a higher quality of life, regardless of chronic illness. I just have to remember to be flexible and willing to explore the possibilities, while also being respectful of and listening to my personal health needs. I am giving all I have to try and continue strengthening and deepening my connections with my family more and more, even though we are already close. This is not always as easy as it sounds, as my health limits the amount of time or type of activity that I can handle. However, it has allowed our time together to be more communication based and passive, which can me amazingly rewarding. The conversations with those I love, well, they have opened my eyes to see, witness, and reiterate just how blessed I am to have them in my life. My Faith in God, His Comfort, His Love, His Grace, have gotten me through some extremely difficult circumstances and trials. I am praying that my connection to God will continue to strengthen and that He will use me and my trials as a way to help bring comfort to others through their struggles. To get to that point, I know I need to find the courage and confidence to step up and press forward in search of His purpose for me. I have to be willing to overcome my fears and hesitations. I must look within, Trust God's plan, and rebuild my inner strength by utilizing the strength that He provides me with. I need to surround myself with people, online or in person, that will enrich my life and challenge me emotionally, mentally, and spiritually while also respecting the health challenges that I'm exposed to daily. In order to accomplish these goals, I have chosen to read and complete the Changes That Heal book and workbook by Dr. Henry Cloud. I am hoping to be able to attend a few book study sessions to increase my understanding and healing, if my health cooperates, but I have also joined a related online group. Being a part of the online group will help hold me accountable, but even more importantly, will possibly develop an additional support system that can further improve my personal spiritual and emotional growth. 3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 5 For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. 6 If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. 7 And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort. (2 Corinthians 1:3-7 NIV) *Below are the links to the authors' books that were referenced above.* Changes that Heal (Book & Workbook) by Dr. Henry Cloud After the Diagnosis: from Crisis by JoAnn LeMaistre After the Diagnosis: Transcending Chronic Illness by Julian Seifter and Betsy Seifter When being faced with challenges in your life, regardless of whether they are related to your physical, emotional, mental, or spiritual health, it is not uncommon to feel uncertain about how to proceed in life. You can be given wonderful advice, often advice that you yourself would agree to, but still be left feeling misunderstood, confused, or maybe even lost and alone.
If you are like me, you still have a desire to live life. You want to be active and enjoy moments with those that you love, while also having an inner need to feel as if your life is meaningful and purposeful. But what do you do when you seem to get stuck? What do you do when illness, it's symptoms, it's limitations, it's impact on life, and even your fears of doubt and uncertainty attempt to hold you back? After reflecting on my own personal experiences, contemplating advice I've heard and read, while also considering suggestions of support that I offer my friends and loved ones when they are in need, I devised a plan. My main goal is to keep moving forward, by viewing and utilizing the obstacles that I face in life, not as a hindrance, but instead as GROWING POINTS. So how does one do that? How can the negatives in life lead to new outlooks and positive growth? Below is a general outline of points that may help improve personal growth. By no means have I mastered any of the following. I am still a work in progress and will continue to be for the remainder of my life. This list is more like a guideline for me. These reminders will hopefully aide me in helping those I care about, myself, and possibly even others, with the perspective of discovering and obtaining growth in the midst of our illness, pain, or suffering.
Follow your heart, not fear!
Recently, I decided to allow myself to follow my heart and desire of spending quality time with my kids, instead of listening to fears about any possible consequences of my actions. I was limited, excited, nervous and even concerned prior to the trip, but really wanted this experience with my kids. (Last year, I had to remain at home due to my health and promised my kids that I would do everything possible in order to participate this year.) Even though I would only be able be at the park for a short amount of time, I knew that I had to rent a scooter. I dreaded renting a scooter, but it was expected by my family, required for me to physically be able to join them, and actually essential in order to actually enjoy the environment. I am so glad that I bit my pride and prioritized living in the moment over avoiding possible judgement from strangers. Even with the scooter and the minimal time in attendance, I was still worn out physically. This was likely due to the ride there & standing in line for 30 min waiting for the park to open. (Thankfully, it was a cool evening and the park wasn't open during the day while they prepared for the fun Halloween festivities. We had get there early to be sure that a scooter would be available.) My family made it welcoming by not being ashamed or resentful of my limitations and clearly vocalized that they didn't care and it didn't matter what anyone else thought. The kids made the choice not to ride any rides, since I was with them, but instead decided to just experience the Halloween festivities. Cruising around the the park alongside them with monsters, ghouls, and eerie green fog was definitely entertaining! My kids' eagerness and excitement was contagious, so with their encouragement, I elected to enter 2 or 3 of the Halloween mazes. Due to fatigue, I remained on the scooter while they went through the other Halloween attractions. When waiting, I watched the other amusement park guests being scared by the zombies and monsters walking throughout the park, and talked with my husband. Due to my strength, we only stayed at the park for about 2 hours, but I haven’t laughed so hard in years. Returning to the car was extremely hard and taxing on me, even though we were parked close to the gate. Pain, stiffness, & fatigue made it challenging to get comfortable when returning to the camping cabin (Thankfully, I prepared by bring my heating pad!) Saturday, was an easy calm day at the cabin - too sore and fatigued to move around - but filled with such delight to be away from my house and relaxing with my family. They stayed at the cabin with me for most of the day watching football, cooking out, coloring, talking, etc before they returned back to the park to enjoy another night of spooky fun. I did not return the second night, but that was absolutely fine with me. Overcoming my fear, achieving my goal, pursuing my interest, and living in the moment, was exhilarating. I could have easily focused on what I couldn’t do, how fast by body fatigued, what I missed, etc —- but this time my spirit chose to focus on the love and heart’s desire for quality of life. The smiling, laughing, joy, happiness, connection with family, and even sore muscles (including cheeks from all of the smiles and laughter), made the experience everything I needed, wanted, and more! Witnessing their joy while feeling my heart beam - nothing else mattered. Did I still get sick on my trip? Yes Was pain obsolete? Not at all. It was still very present. Was sleep or lack of still an issue? Yes. Nausea? Yes, though I minimized it as much as possible by limiting intake a couple days prior to the trip and while away. Was the trip easy on my body? Absolutely not, it took days to rebound to my "normal" fatigue levels. But emotionally, it was more than worthwhile. Most importantly, I experienced a glimpse of life’s beauty, quality family time, happiness, & more of God’s blessings. I am so blessed and thankful for the encouragement from God, my family, & my doctor to help make this opportunity possible in my heart & mind. Hopefully, we will be able to repeat this vacation next October. In the meantime, I can guarantee that it will remain a cherished and treasured memory forever. Quotes from After the Diagnosis by Julian Seifter: "Travel, movement, and risks are ways to stay alive, to flex muscles, to feel more whole." "Testing the extremes may have been a way of locating the right balance." |
Trisha BundyA proud mother, educator, Gastroparesis & GI Motility Disorder Advocate, Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
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