STAYING....... G ain and/or keep motivated to hang-on by thinking about, considering, & create plans w/ my kids. R emind self that experience tells me it will eventually change/improve some. O riginate plans of what I’d like to do when I begin to feel better, when symptoms are tolerable. U nderstand, learn to better recognize and avoid triggers when possible. N ot everything has a solution, sometimes just have to deal, breathe, live through. D on’t fight too hard, forcing or thinking failure may actually make matters worse. E liminate self-destruction, if self-care or coping strategies aren’t working, don’t let it bring me down. D oing best I can in the moment, so be patient and forgiving to self, stop the blaming of self. During flares and/or low points. Helpful free resource I discovered on twitter to help with relaxation that may be beneficial to others as well. https://t.co/QVGhvEwZLZ?amp=1
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Each day, I hook up to my tube and machine since eating creates too much pain and symptoms.
Nutritional fuel for my body. Tubes can be used for various medical conditions and all age groups. Every 3-6 months I return to Interventional Radiology for a tube exchange. Rates, volume, and types of formula feeds can be altered based on each individuals' needs. A feeding tube does not mean death. They can improve one's quality of life. Liquid formula enters my body through a tube in my abdomen directly into my small intestine. Necessary to keep me and other people alive. Unfortunately, there are some dangers and complications with enteral nutrition. Types vary from long danglers to low profile buttons with extensions. Reduces vitamin deficiencies and some symptoms caused by "normal" eating. It can be carried in a backpack or rolled around on a pole. Tubes don't cure diseases & aren't successful for everyone. Some need IV feeds, TPN, instead. Irritation of skin caused by stomach acid leakage around the tube site can occur. Opportunity to increase nutritional lab values, absorption, and possibly energy. Nasal tubes or abdominal tubes are available to enter stomach and/or small intestines. I do NOT write for sympathy. I do NOT seek sympathy from anyone.
I do NOT write for attention. I do NOT seek attention from anyone. I simply write to record and process my personal experiences and post in the off chance that they may help someone else. I simply strive to discover a better quality of life; to figure out a way to help my body feel better while living with illness. If you do not understand and accept that, then step out of my way, taking your false accusations and judgements. The morning was fairly normal,
when compared to my normal at least. My fatigue and nausea, more pronounced, but in my experience they are always a beast. I rode with my son on an errand looking for where at his school he's to park. Not knowing what lay just ahead was my body preparing to spark. I infused my regular lactated ringers using my PICC line, like every other day. Fueling my body with needed fluids to keep my dehydration at bay. But hiding beneath my skin were embers that were no longer dormant. Out of nowhere chills overcame me with pain in my legs a boiling torment. The internal blaze combusted My body radiating such heat. Intense freezing yet also burning Fever scorching over 103 Unable to sit still or even to walk I was in such tormentuous misery. An infection was clearly simmering, uncontrolled wildfire burning within me. I tried denial and avoidance For at home is where I wanted to stay. I didn't want another line infection My mind unsuccessfully tried to will it away. But, my family saw through my anguish urged me to get promptly checked out. Sluggishly I made my way for another hospitalization, no doubt. Look at the outer me,
really look! Do I look fine, to you? In some ways I am fine, but not fine as well. Moving around the house, tube feeds for nutrition, IV hydration, Couple sips or spoonfuls here or there. So yes I may be fine, But not fine as well. Do you see what's beneath the cover, what's in my soul, the scars upon my body, physically and deep within? Yes, I may be fine, But not fine as well. Have you experienced my pain, my nausea, or constant fatigue? Silently trying to avoid outsiders from seeing my inner struggles. Yes, I may appear fine, But not fine as well. Have you ever given up, not wanting to bother talking to a doctor? Already knowing there's no relief to be found, no new way to describe or explain. Yes, I may act fine, But, I'm not fine as well. So when you see me smiling, laughing, joking, loving Know that I'm also crying, struggling, pretending, trying. As sometimes I may be fine, But, also not fine as well. 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.
With admiration and appreciation, I thank all of the phenomenal doctors that have been a part of my medical team. Inpatient or outpatient, doctors in all areas and specialties have the ability to make a lasting difference and impression in my life as a patient. The experiences that I've had, good and bad, have made me more aware of what I expect, need, desire, and appreciate from my medical providers.
Today, I want to personally and publically thank some of the most incredible doctors that I have worked with along my medical journey. Even though I would like to share their actual names, respecting their privacy is more important. Dear Dr Spectacular, Thank you for being my doctor Over the years, you've learned who I am. My health journey has been better, with you being a part of it. I appreciate your trust and perseverance. Through your actions and encouragement, you've kept me from giving up. Thank you for being by my side, Calling me out, when you knew I was downplaying my situation or symptoms. Thank you for choosing to listen with caring and compassionate attentiveness, For questioning me and having open dialogue to gain more clarity, For communicating with my family and other medical providers when necessary. Thank you for being REAL, empathetic, cautious and never intimidating, For your honesty and for the mutual respect we've shared. Thank you for helping me to remain optimistic, especially when my health is most challenging, And for your willingness to keep searching for the most effective treatment plan. Thank you for taking time during our appointments, never making me feel rushed, And for seeing me as a person, not just as a patient case. Thank you for always being prepared, with alternate back up plans available and ready. Thank you for understanding ME, remembering previous encounters, & not just following my chart. Thank you for encouraging me to communicate between appointments, And for quickly responding to my updates and questions, even if I was unsure about sharing. Thank you for taking me seriously, not writing me off or blaming me when an easy solution was nowhere to be found. Thank you for ensuring that I've always felt safe, respected, and heard when under your care. Thank you for taking the risks to invest your time and attention to my health needs, For tolerating my silence, shortcomings, and attempts to avoid "bothering" you. Thank you for the countless times you've reassured me that I was never a bother, For your confidence, kindness, knowledge, curiosity, and eagerness to assist me. Thank you for having the ability to see through me to the reality of my health's impact on daily life. With the utmost gratitude, I express my appreciation for you. I thank you for the positive impact you have made in my life, For always being patient with me, while also looking out for my best interests. We may not have all of the answers or solutions, but I thank you immensely for the improvements we have accomplished. Thank you for being a spectacular doctor! Desperately needing a vacation from myself
I have no more patience to spare I'm losing sight of who I am Pain, Sickness, Emotions becoming too much to bear. A haze quickly descends to surround me The cold harsh reality stings. Settling fog makes it harder and harder to see While sickness and doubts effortlessly cling. Confusion trickles down my spine as I search for my reprieve. Nausea and pain overcome me Tears, visible and hidden, shed as I grieve. My body holds me prisoner Chains and shackles holding me back. Enclosed by walls of burden Praying my stability doesn't completely crack. I try not to be resentful I attempt to handle it in stride. I know that God's right beside me Willing and ready to be my guide. He has His purpose, that I know And believe it with all of my heart. He never promised it would be easy But I never imagined that it would be this hard. |
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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