Why is initiating contact with my medical team difficult? I trust them, have good rapport with them (I think), and am able to talk and answer questions with them honestly. So why is it hard to reach out to them when health issues arise or worsen?
To some, including my family, my thoughts, my considerations, my fears, and my concerns may seem petty, silly, or ridiculous. But to me - they are reality. I have an amazing medical team that I trust. I feel confident and comfortable with the care that they provide. I honestly believe that they are on my side, wanting to help in any way they can to improve my symptoms and quality of life. I do believe that they are willing to go above and beyond to meet my health needs when needed, as they have proven this too me on numerous occasions, that they will try to protect me from unnecessary treatments/procedures, and even give their best effort to help me avoid the ER if at all possible. I can't even describe how encouraging and refreshing it is to have this sense of being in the care of a wonderful medical team. I am determined not to do anything to jeopardize it - as I've witnessed having doctors that don't care, one's that don't take the time to consider or treat their patients as a person, and have heard horror stories from people that have been "kicked aside" by their doctors and left with no one to turn to or depend on. I can't let that happen to me. I have to protect what's actually going right in my health journey! This journey is difficult and challenging enough as it is. But having a medical team that I have confidence, faith, and trust in helps make the journey a little less frightening. My key questions that keep revolving and challenging me are ... How am I suppose to know when my health issues are dire enough to let someone outside of the family know? When is it necessary and important for me to initiate contact with my doctors and/or home health nurse? Do you have difficulty contacting your medical team regarding your health needs and concerns? What are your reasons and experiences? Have you set a personal guideline to help you determine when to reach out and contact your medical providers?
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Anyone that knows me, knows that I have a difficult time determining when symptoms increase to the point that I need to make a special point to contact and inform my home nurse and/or doctor. It's easy for someone else, like family members and friends, to suggest placing a call or sending an email when symptoms have progressed. However, for those living with chronic illnesses, it's not so easy. We deal with symptoms every single day so it becomes a trivial matter. I don't know about others, but for me, I begin second guessing whether or not the symptoms are important enough to ask for medical help or advice. My fear is that I will begin to sound like a whiner, hypochondriac, or nuisance over "minor" things which will make it difficult for others to believe me when something serious is happening. This mentality, though it has great intentions, can be extremely risky for me. There have been numerous occasions where I attempted to "tough it out" too long, resulting in dangerous consequences. It's difficult determining where to draw the line, when does survival actually become denial.
You see, the past couple of weeks my energy and strength has been more depleted than normal. I have been battling increased nausea, frequent lightheaded spells, sporadic discomfort around my PORT, moments of low grade temperatures, and occasional spurts of tachycardia. None of these symptoms are completely uncommon or new for me, so even though my family had been urging me to talk with my medical team, I didn't see the need. I mean, what could they actually say or do that would help? It's not like I was in continuous debilitating pain or completely unable to survive. I was trying to take the harsh moments in stride and hold on until calmer moments returned. I can't possibly reach out to my medical team every time I am feeling rotten. I have to learn to live with pain, discomfort, nausea, and fatigue as in some degree they have become "my normal." Eventually, after days of persuasion, I did break down and call my Home Health nurse to let him know about the off and on again discomfort around my site. I told him that my family was concerned, though I felt like I was alright. I answered a few questions that he had and felt comfortable knowing that he would be out on Friday to de-access my PORT for the weekend. Since all my vitals appeared fine and I was not in any discomfort at the time, we decided that we would monitor the situation over the weekend. During the weekend, I began having more spells of chills and low grade fevers, with my exhaustion levels rising. When Home Health came out on Monday to access my PORT, I was still experiencing chills. Being cold is not uncommon for me, but apparently wearing my favorite sweatpants and sweatshirt while wrapped in a heavy comforter during the summer while everyone else in my house is shirtless or in tank tops is considered odd. Go figure. My nurse did not like the symptoms that I was expressing, even though I reassured him that I would be okay. However, my heart rate being elevated made him think otherwise. While in my driveway he called my GI, who immediately placed an order to draw labs and cultures. It wasn't long before my nurse returned with the supplies to begin my bloodwork. Unfortunately, he was only able to draw peripheral labs (from arm) since we were unable to receive any blood from my PORT. In order to figure out what was going on inside my PORT, I had to visit the VIR (Vascular Intervention Radiology) department Wednesday morning. This visit was rather quick and I returned home feeling rather normal, well MY normal anyway, and felt confident that everything was fine. I firmly believed that I was just experiencing another "flare". To my surprise, I received a phone call around 8:10 Thursday morning from my GI. This was very unexpected and sent my head spinning. He informed me that my peripheral cultures from Monday were negative, however, the PORT culture from the previous day was Gram Positive, indicating an infection. All of a sudden, I was in a whirl of confusion. How could it be possible? I had been feeling rougher than normal, but not to the point that I couldn't handle it. An infection in my PORT??!! I know how dangerous PORT infections can be. I also know that having an infection there can drastically change if it enters the blood stream, placing me at a risk of becoming septic. I did not want that to happen. My GI stated that I would have to be admitted to the hospital for IV antibiotics and that I would most likely have to have my PORT removed. Red flags overwhelmed me as I began worrying about how I would be able to stay hydrated without my PORT. A few minutes later, my GI called back and told me that I would be able to receive IV fluids along with my antibiotics while I was in the hospital. I was then instructed to enter through the emergency department and let them know that he had requested that I come in due to a positive culture in my central line. Emergency Department!!! Ugggh - I did not look forward to this at all. How long would I be stuck in the uncomfortable waiting room. Thankfully, everything went very smoothly. Registering was a breeze, as my GI had already electronically documented my expected arrival and reasoning. Immediately, I was led to a bed, the ED doctor came to speak to me, an assessment was taken, fluids were begun, and an antibiotic - Vancomycin - was started. I was rather impressed at how easy everything was moving along. Prayers were being answered. I was even surprised and more than delighted when I saw who the doctor that was "officially" admitting me was. It was none other than, Dr M, my favorite all-time hospitalist. I had not seen him in over 3 years! He remembered me and my case very well. We spent a little while catching up, discussing new health issues since we had last spoken, and current symptoms that may have been related to the infection. I explained to him how difficult it was to distinguish which symptoms were worth noting and which were just common occurancies, especially being that none of them were truly uncommon. He completely understood my hesitancy in reaching out for help, though also reminded me that I know my body better than anyone else. After our conversation, he promised me that I would be well taken care of, that he would place me in the care of a doctor he thought I would feel comfortable with and a NP that I've become to know well. In addition, he said that he would make a note that I would be in control of my tube feeds and that I would be able to take a break or adjust the rating as I needed. He was the same doctor that I respected and appreciated years ago. Calmness overcame me until........ Craziness overwhelmed me. All of a sudden, not even 10 minutes after my doctor walked away, I began feeling really strange. My heart began thumping really loud in my chest. It was pounding harder and harder as my heart rate steadily rose higher and higher. My head felt like pressure was continuously building, heat radiating from flushing, and according to my mom changing to darker and darker shades of red. It honestly felt like my chest and head were going to explode at any time. As I tried to stand up and walk to the bathroom, my blood pressure dropped and dizziness overcame me. Standing there, depending on my mother and nurse to hold me up, while waiting for someone to grab a wheel chair for me. What was going one? Why was I all of a sudden feeling so awful? Come to find out, I had a reaction to Vancomycin. They call it "Red Man's Syndrome". I had never heard of that before, but learned really quickly that it's something I never wanted to experience again as well as something that the nurse's were fearful of. Apparently, it can be extremely dangerous, even lethal, if the reaction was to continue. After a break from the medicine, we were able to restart it and successfully administer it at a very slow rate. Everything else during my hospital stay was rather uneventful, which I did not mind at all. My PORT was removed on Friday, labs were monitored, tube feeds managed, and IV fluids with Vancomycin were administered. Absolutely everyone that I came in contact with during my stay - doctors, nurses, nursing assistants, etc were extremely helpful and pleasant. I honestly left without having any complaints at all regarding the care I received from the hospital staff. My GI even came by to visit me during my stay, which means a lot. I can't begin to explain just how important and reassuring it is to have a GI that truly cares about me as a person. All in all, I had a positive experience with a situation that could have been much worse. Once again, I was reminded of the amazing support team I have surrounding me. I am truly blessed! In this video I am sharing what alternative nutrition may look like for those with Gastroparesis and Functional GI Motility Disorders. Many in our community are literally starving and dying from complications from these devastating illnesses. Some are able to survive on small "bites" of food throughout the day or liquid only diets, still suffering the pain, nausea, and other relentless symptoms. Others are dependent on Feeding Tubes, IV fluids, and/or TPN to receive the nutrients that they need, but still facing many of the awful symptoms on a daily basis. There are very few treatments available, many of which are unreliable, carry black label warnings due to severe side effects, or not even FDA approved in our country. Please help us raise awareness! We're not invisible. We're tired of our watching our friends and members in our online communities DIE from malnutrition, dehydration, starvation, organ failure, sepsis, etc as a result of the debilitating disease. How can you help? Sign to show your support and ask congressional members to support research and funding for Functional GI Motility Disorders. Donations if interested can be made to IFFGD at https://www.iffgd.org or AGMD at http://www.agmd-gimotility.org/ #TakeABite4GP and share on Social Media Learn more about GP from both the medical and patient side by checking out www.curegp.com I may bend, but I refuse to break! Everyone faces their own trials through Earth's journey. Whether it's relationships, health, finances, inner struggles or a combination of all, we have choices to make. Some will be easy, some will be hard. But regardless, we hold the power to decide how we will handle the challenges. I choose to be ME! You can like me, love me, or even hate me, but I will remain true to myself. I choose to remain kind. I choose to openly care. I choose to advocate for my health community. I choose to maintain my faith in God and humanity. I choose to provide hope and inspiration to others when I can. There will be haters. There will be those that believe the world revolves around them. There will be backstabbers and fakers. There will be "friends" that appear to be around, but when called upon are nowhere to be found. See the thing is - though I may care what others think - my life does not depend on others' approval. If you don't love me for me, or respect me for what I stand for, then you can step out of my way. Life is not full of happiness and joy 24/7. Pain, sorrow, sickness, and tears are inevitable. I choose not to sit silent! Criticism will not stop me. Mocking will not hinder me. The hurtful comments and words may put a dent in my spirit, but they will not break me. I will regain composure and continue marching forward. One thing I've learned in life is that nothing is perfect, no matter how hard you try. We must be willing to stand up when we fall, fight for our own wellbeing, be flexible, and willing to bend. I will not lie! I have experienced life struggles that have cracked me. More times than I can count I've depended on God to help heal my mind, heart, and soul when I felt like I was falling to pieces. Life has wounded me, my health has bruised me, people have disappointed me, tears and sorrows have drowned me. Faith in God and HIS plan has saved me numerous times. So while some sit high on their thrones, throw insults to injure, or make their judgemental accusations, I will stand tall! I will remain strong! I have an amazing team of warriors in my corner and GOD as my leader. So attempt as you may, I will take your heat. I will bend, twist, and maybe even crack. I will survive through disappointments. I will take my health one day at a time. I will live from my heart. The devil and his messengers may try to destroy me. God may send me on journeys that I don't completely understand or lead me into battles that are a test of my faith; All with a purpose of developing me into the masterpiece that HE envisions. I'll continue to accept all challenges and overcome any obstacles that become a part of my journey. I have an everlasting trust that God will not allow me to fully break! HE will continue to send calmness and support during my storms, even carrying me when I become too worn to endure any further. God is my maker and HE is my protector. I may bend, but I will NOT break! © 2015-2017 Trisha Bundy ALL RIGHTS RESERVED I have been very blessed with my medical team and have learned to "pay it forward" by sharing my compliments to all involved. The following letter is one that I wrote and sent to my Home Health Care nurse and his employer. In order to respect their privacy, I did not include their names in the copy I am posting on my blog. (Of coarse, in the original one that was sent to them, his name and the company name was mentioned numerous times.) To whom it may concern, Prior to Jan 21, 2016 I had no personal experience with having a Home Health Nurse visiting my home to assist me with my medical needs. However, over the past 3+ years, I have had numerous experiences with nurses during clinic, ER visits, procedures, and hospitalizations. Additionally, I am active in online Gastroparesis & Chronic Illness support groups and hear all the time about the experiences that others have with their nurses. As a result, I have gained a lot of knowledge about the impact that a nurse can have on one’s well-being, patient experience, and health status. I have also learned to appreciate a great nurse when you find one, not only by letting them know personally but by also sharing with others, including their supervisors and the medical providers that employ them. I’d love to say that every nurse that has been or currently is on my medical team has been amazing, unfortunately, that is definitely not always the case. As I’m sure you know, it can be difficult to find medical providers (nurses, doctors, etc) that are able to empathize, communicate, and create a trusting relationship with their patients. Having a chronic illness, one that is not well understood or even known of, can be difficult for anyone. In my case, my digestive system became dysfunctional. Being unable to eat and process it normally (gastroparesis, colonic inertia, etc) has created severe symptoms of nausea, heaving/vomiting, intense abdominal pain, fatigue, dizziness, dehydration, etc. These illnesses have made me dependent on tube feeds, an ileostomy bag, and currently IV hydration as well. On Jan 8, 2016 I underwent surgery - a colectomy with ileostomy. What was suppose to keep me in the hospital for a few days, ended up keeping me for 2 weeks due to complication of an ileus, dehydration and difficulty receiving adequate nutrition thru my feeding tube. Eventually, I was discharged home with a PICC line and Home Health Nurse. I was frightened to have a home nurse as I often hear horror stories from other patients regarding their experiences. I was also fearful of having a PICC line due to possible infections. I was scared that my nurse would be mean, disrespectful, uncaring, judgemental and not properly take care of my health safety, such as not maintaining the sterilization necessary to decrease risk of infection. Many of my online friends have been hospitalized and some have even died from Sepsis infections. I am glad to report that my experience thus far with my Home Health company has been a very positive experience. All of the nurses that have been a part of my care team from have been friendly and respectful. I thank you for employing nurses like them on your staff. With this letter, my goal is to discuss how amazing my main nurse has been. Beginning with my PICC line and currently with my PORT (both used for IV hydration), he is always very thorough and diligent with maintaining a clean and sterile process. Regardless of if he’s exchanging the dressing around my PICC, when I had it, or currently accessing my PORT each week, I can depend on him to keep me as safe and as infection free as possible. I appreciate how he explains what he is doing along the way, especially if something “new” is happening. I have been impressed with how well he communicates not only with me, but also with my husband and even my Dr when the need arises. He appears to truly listen and is able to effectively communicate my needs (even if I’m not sure of them myself) to whomever necessary. It takes a lot for me to trust new members on my medical team, but he has demonstrated time and time again that I can trust him. I feel as though he actually cares about my health and wants to help me improve. I’m confident that he’s qualified and able to effectively advocate for my medical needs if needed, as he has already done so on numerous occasions. One was when I became dehydrated, lethargic, and weak. I was desperately not wanting to make a trip to the dreaded ER, even though I knew it was at that point. My home nurse worked alongside my husband in convincing me that it was time to seek assistance from the ER, while also working behind the scenes with my GI to get fluids back on board at home. Another example was the time that I began showing signs of an infection near my PORT. With increasing pain around my PORT, I eventually broke down and called him on a Sunday evening. He was very encouraging as he made arrangements to come by and check out my PORT. Due to the pain and symptoms, he instantly removed my PORT needle and noticed that I had signs of infection near my surgical site. Calming my fears of not wanting to return to ER, he was able to talk directly with my GI (thanks to them already having an open line of communication) and get antibiotics on board immediately. Thankfully, the antibiotics eliminated the infection and saved me from having to have my PORT pulled and replaced. If it had not been for his calm but swift caring actions and problem solving skills, I would have either ended up in the ER or had to face a more severe infection. Additionally, he has also contacted the pharmacist on my behalf when we were having issues with receiving much needed nausea medication due to insurance barriers. Other characteristics that I value from his care include: his willingness to learn more about my condition, his positive and welcoming persona, and his time management. He always arrives within the expected time or lets me know if the time changes, which is to be expected within the healthcare profession. At times I have had to schedule necessary medical appointments, which can influence the time of day that I’m available for a home nurse to visit. When this occurs, my home nurse has always been flexible to arrange a time that works around these appointments and has remained positive, never making me feel like I’m inconveniencing him - even if a last minute change occurs due to traffic. (My Drs are all out of town.) Something else that I appreciate from him is that he is extremely easy to talk to and makes me feel comfortable. He does not make me feel inferior, like some nurses in my past experiences have. Many times (as result of past experiences and fears) I find myself downplaying symptoms or hesitating to reach out to medical providers. I don’t want to be a nuisance or have to return to the hospital. In fear of being mocked, misunderstood, dismissed, ignored, and "labeled", I've become stubborn. I do my absolute best to tough things out as long as I can, sometimes admittedly too long. However, he has been able to recognize when I’m having difficulty and instead of judging me, he encourages me to keep him and my doctor updated while also reminding me that it’s okay to call when there is a problem (not to wait it out). He has never made me feel awkward or bad about having to call him for any medical issue or concern when they’ve appeared. In conclusion, I want you to know that I am completely satisfied and thankful for the care that my Home Health company has provided me with. I would definitely recommend them to others that are in need of Home Health Care services. I can honestly state that I have witnessed first hand the integrity, caring, compassion, and professionalism that I expect and respect from health care providers; all of which are posted online as their core values. As a result of my past experiences, I have learned to never underestimate the power and impact of having a compassionate, empathetic, and kind nurse. Whether in the physician's clinic, inpatient at a hospital, scurrying around the Emergency Department, or a part of one’s medical team as a Home Health nurse, nurses are an essential part to one’s patient experience and health journey. The past 3 years have been difficult for me. Learning to live with my health issues and lifestyle changes would be impossible without the wonderful nurses that I have met along the way. Having a health care team that you can depend on and trust is important, especially for those with chronic illnesses. Having an exceptional nurse who connects and communicates well with everyone involved (patient, family, & doctors) is definitely a valuable asset, and I feel very fortunate to feel as if I have such an exceptional nurse as part of my health team. Not only do my family and I respect him as a nurse, but so does my Dr, and that speaks volumes. I hope that eventually I will regain better health, but until that day comes, I hope to continue receiving the extraordinary care that my nurse, and nurses similar to him, provide under your leadership. Sincerely, Trish Sometimes there's just not much you can say. Times get tough, body and mind become exhausted, circumstances that you may or may not be able to control start to overwhelm your spirit. So what can you do? JUST BREATHE! At least that is my current goal! I'm fighting to regain my positivity. I'm holding on tightly to my faith and belief that there is something more. It's hard! Living with chronic illness is chaotic. Life becomes crazy. Quite honestly, it wears me down. Horrible symptoms sometimes send me in a whirlwind, plummeting me into dark shadows. I become saddened as I watch friends and peers that are literally starving to death because the medical field can't figure out how to help us. I become frustrated when we can't gain the support we need for more research and awareness. (Something as simple as signing a petition for Congress to support Bill HR 2311, which would provide more funding for digestive motility disorders.) I am heartbroken when I learn of deaths that could have been prevented if families, friends, and medical teams could have just shown empathy, believed their struggles, and cared enough to try and help. I become angry when I learn of more deaths in our health community as a result of being unable to receive proper healthcare, nutrition, or intervention due to the lack of knowledge or desire to understand our health needs. The emotions can become a tangled mess that drags me down, tears at my heart, and even holds me prisoner. Leaving me with the only things, most likely the most important things I can do. JUST BREATHE and TRUST that GOD has control and a plan that will make all of my struggles meaningful and worthwhile! I feel certain that God has his reasons. I have learned so much more about myself and the world as a result of my health journey. My relationships with God and family have become much deeper. I have witnessed times of strength behind my feeding tube and ileostomy. But I have also discovered some of my weaknesses. I know that here are still lessons on Earth here for me to learn. There is love for me to share and experience. I can't give up now! Instead I have to press forward and JUST BREATHE while I attempt to JUST BE whatever God intends for me to be. "Breathe" by Jonny Diaz
I'm not sure where to begin today. My goal is to write a letter to myself. Specifically a letter from my victorious warrior to the me that feels completely defeated. This task seems so impossible at the current time, as my inner warrior is currently missing, hidden, or being held captive. In order to discover what positive message my warrior would say in response to me feeling defeated, I need to first see why I feel the way I do. What's causing me to feel defeated? Why now? Presently, I am aware that I have fears of dismissal, fears of losing medical support, and fears of being incorrectly labeled. Though for the most part I have no reason based on the care I've received thus far, I hear about these situations ALL THE TIME from others. I don't want to be looked down upon. I don't want to be considered emotionally weak, even if I may be at times, because I don't want to lose respect from my medical team or family. I don't want to be referred to as a "robot" or "artificial", even if I am currently dependent on a feeding tube, PORT, and ileostomy. I don't want to be given up on or have no more explanations or options available that can help me feel better, even if I feel like giving up myself. I'm scared of being hospitalized again, which leaves me walking on eggshells about when or even if I should reach out for help. If I do, how much should I actually say to inform them of my reality without hindering my healthcare or landing me back in the hospital? I'm fearful of having no medical support, fearful that eventually they will no longer be willing to help me improve my health. To be perfectly honest, avoidance of these situations and fears are so much easier, even if they do carry consequences along with them. I am defeated because my energy is so depleted, sleep and rest no longer leaving me feeling refreshed. I have lack of control for my nausea and fatigue, though IV fluids are helping. I honestly do want to give up, or at least not fight, when I am treading water during my most difficult times, exhausted, weak, & fatigued physically and mentally. During these trying times I change from being strong, positive, hopeful and encouraged to passive, discouraged, and even hopeless. Crawling or escaping out of these trenches seem so impossible. Sometimes I feel as though I am stuck or hidden in a foreign body. I am broken and embarrassed. I feel like I have fought so long and so hard, trying with all I have, pushing myself to various levels of discomfort and suffering, just to give my body a chance. I do my absolute best to follow all medical advice in hopes that things may change or improve, at least a little. But I still have doubters, damn I'm not going to lie, I have begun doubting my own self. These "exercises" , these attempts of trying, seem to do more harm than good sometimes. So what's the point of bothering with any of it anymore? Yes, I do want to quit, give up, or disappear during these hardships. I've truly considered when & how to quit in a way that is not too harsh on my family or myself. Deep down, I know that is not what I need to do. Deep down, I do not believe that I would ever do anything to intentionally harm myself. Most likely I would just completely let things be, quit communicating about my illness, and give up trying to find answers or relief. I know it's not healthy, but I do sometimes wonder why has everything I worked so hard for disappeared? Where has the powerful and positive me gone? How can I or will I ever get any of it back? Will I gain enough strength, patience, and better health to be able to successfully return to teaching one day? I can't possibly be the teacher that I pride myself in under these current conditions. So yes, that adds to my defeat. The planning would be tiring enough, but the actual teaching that I love so much would also be unsuccessful if I continue to remain so lethargic - not to mention all my other symptoms. Taking on the responsibility to return to teaching is a very tall order - as I don't have the energy, spunk, patience, or mindset to teach a class of 30 students right now. It would be unfair to my students and colleagues when I get unexpectedly sick or need numerous medical treatments/appointments - requiring me take off of work numerous times each week/month, sometimes without warning or an advance notice. As much as I LOVE teaching, the reality tells me that I may never return to a career I cherished so much. Teaching has always been one of my passions, but if I can't give 100% I would just be a failure to my students and myself. I don't have an option of being a part-time teacher. I could possibly substitute - but even that is too much at the present time. Can you understand how frustrated and defeated this makes me feel? I'm defeated because even though I have been attempting everything I can possibly do to improve, I keep hitting roadblocks. I am so confused and lost about what is in my personal best interest. I don't know the right words to describe exactly what I'm feeling, as there's a mixture of emotions (good and bad), so I'll just leave it at I'm defeated and am having trouble allowing my "warrior" side to be heard, especially during moments when I need her the most. So how would my "warrior" self handle things? As a warrior, I would expect to be able to recognize my willingness to be transparent in order to help others in similar battles. Writing and sharing my personal health journey on various platforms, including my blog, takes a lot of courage. In an attempt to spread awareness and let others know that they are not alone, I've opened up my heart and soul for anyone and everyone that wants to better understand my life with illness. This has proven to be therapeutically awakening for me. I have taken risks in allowing others to see my inner thoughts and personal struggles. Writing has helped me in so many ways, yet sharing it, has admittedly been empowering and hopefully inspirational for some. The warrior in me would see how far I've come in creating a medical team that consists of compassionate doctors and a Home Health nurse, all of whom have great communication skills, display empathy, and truly appear to be concerned and care about my well-being. Wow, that's a victory for sure! The warrior in me would emphasize the amazing family support I have and my advocacy efforts. It would question why I'm so disappointed in myself, why I'm so critical of myself, and why I'm letting a couple of bad medical experiences haunt me and hinder me from reaching out to the medical field. If I trust my doctors, then why do I still hesitate to ask them for help when I need it? My warrior self would remind me of my determined and competitive side, which seems to be harder and harder to fine. The side of me that would never give up or quit, the side of me that still wants to make a difference, the side of me that believes in possibilities and chases after her dreams. The side of me that was tough and would never let someone else's judgements or actions deter me from what's important or hinder me from pressing forward. My warrior spirit would voice how it's perfectly OK to ask for help from my family, friends, or medical team. It would suggest asking for help earlier, instead of waiting until I become helpless and hopeless. My warrior would attempt to improve my perspective during rough times & provide encouragement to continue as better days are ahead. It would remind me of how much I love my family and how much my family, especially my kids, need me. It would suggest that I search for laughter daily and when I get knocked down to simply breathe and get back up again. My warrior would admit that I may be struggling or even defeated sometimes, but that I have a 100% success rate of surviving intensely awful moments and obstacles in the past. So what makes the next obstacle or circumstance any different? It would say that acceptance is alright and remind me to be open to trusting others, as many more people and doctors are on my side than against me. Finally, the warrior in me would repeat that I am never alone and that I am strong enough to overcome any challenge that crosses my path. Reminding me of how I've been able to hold onto faith and have trust that GOD's always here by my side. I have always said that he has his reasons and that one day it will all make sense. God has promised me that! I am too blessed to just give up or quit. I may not understand it now, I may never completely understand, but God has His reasons and He does not make mistakes. I serve a purpose for being alive. So regardless of how defeated or exhausted I may feel, my inner warrior says "You've got this! Stay strong, stay faithful and Never Ever Give Up!" I was asked the other day if I accept my life, the way it is, with health conditions and all? The truth is, I don't honestly know if I have or not. Some days I am able to feel content, face the obstacles, and live life in the moment. Other days, I'm agonizing over the pain, misery, and inconvenience of illnesses and life style changes. Many days, I feel like my feeding tube, ileostomy bag, and IV lines are a normal part of me. Nothing to be ashamed of. Resources to improve my quality of life and how I physically feel. But then there are those days when I feel like a mutant, abnormal, like I am becoming artificial. That I am incapable of being normal; Unable to fuel my body with nutrients or hydration like a "normal" person. Unable to even use the bathroom as a "normal" person. Just an awkward science experiment gone wrong. I know that "normal" is a perception, I understand that MY normal is not required to be like everyone else's normal. I'm thankful that I have a feeding tube and IV lines most days, even when they are an aggravation. They eliminate the pain of trying to eat or drink orally and help me have energy (though still lacking) to be a part of life. I have accustomed, for the most part, to having a colectomy with ileostomy. It's without a doubt less than ideal, but it removed the unexplainable gut wrenching pain that tormented me day after day as a result of colonic inertia. These devices and "accessories" are tolerable. They make life more manageable and increase my ability to actually "live" life. Currently, they are a necessity. I can accept that. But do I accept my life like this? Do I accept that things may never change? Does acceptance mean that I am inviting illness to stay? Would completely accepting my illness mean that I welcome it to remain with me forever, no longer hoping that it will go away? According to Wikepedia "Acceptance in human psychology is a person's assent to the reality of a situation, recognizing a process or condition (often a negative or uncomfortable situation) without attempting to change it." Seriously, I'm not sure that I like this definition. Yes, I can see the reality of living with my conditions. I can recognize how they impact my life, positively and negatively, but how do I not attempt to change them? Does that mean that I shouldn't attempt to find better treatment options? Shouldn't attempt to change the ailments and symptoms that make me feel so awful? Not try to fight for a cure or improved health? I'm not sure if that's even possible. According to that definition, would accepting my illness mean that I'm essentially giving up? While pondering the question of acceptance, I decided to search a little deeper. I would think that there has to be a way to reach a level of acceptance without giving up hope that things will one day improve. From my reading, I was reminded that there are 5 stages of Grief: Denial, Anger, Fear, Hope, and finally Acceptance. In my past experience, I always linked these five stages with death. But isn't it possible that one would have to journey through each of these levels in order to grieve an unwanted or even chronic disease? I can effortlessly think of times that I have been in denial, angry, fearful, hopeful, and even sometimes accepting of my being sick. Truthfully, I think I seem to bounce back and forth between the stages, trying my hardest to avoid sadness, defeat, frustration, and even depression. Isn't that normal though? Are we expected to be accepting all of the time? I know I accept many aspects of my condition most of the time, probably much more extrinsically than intrinsically. (I do attempt to at least appear that I have everything together, that everything will be alright, that I can handle this, etc. ) How else can I remain strong, and not weak, in the eyes of others? In order for me to consider complete acceptance, I must first determine what I believe acceptance to truly look and feel like. If you asked me what acceptance is I would most likely describe it as follows: Acceptance does not necessarily mean I'm giving up or that I keep all of my emotions in check ALL of the time. It does not mean that I will never doubt myself or feel sad. Acceptance to me, does not mean that I'm completely resigned to the fact that my health status is set in stone forever. It does not mean that I have to have a cure or that my illness will eventually disappear. But it also does not hinder my treatment options or limit future possibilities. What acceptance does mean to me is that I'm in a state of being at peace. Acceptance means that I am aware that this is my reality now, so I have to be ready and prepared to live with the cards I'm dealt. Acceptance would simply mean that I'm OK with where my body and mind are on any given day, that I value what my body CAN accomplish, without focusing my energy on what I wish it could do. I don't believe that Acceptance is something I can do once and for all. Acceptance lives in the present moment. In order to accept my current health I must discover a way to keep what I am passionate about in my life. It will take time, work, patience, spirit and heart to entirely accept my illness and make a space for it in my life. I will have to be willing to calmly navigate the various paths of all my emotions, not allowing my inner critic to pass or hold harsh judgements against me. Without a doubt, it will be a difficult and challenging road ahead as I must accept not only the positive emotions and experiences, but all of the negative emotions, obstacles, and struggles as well. I strongly believe that there will be times that I do accept my illness, my feeding tube, my ileostomy, my symptoms, my diagnosis, etc.. However, there will also be times that I do not. And I believe that is okay as long as I am able to resurface and seek out help or support when needed. So back to the original question. Have I reached the ultimate level of ACCEPTANCE? I guess my response depends on what acceptance means to you and on which day you ask; Because my answer will likely fluctuate between YES, NO, and MAYBE SO. © 2015-2017 Trisha Bundy ALL RIGHTS RESERVED |
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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