I am beyond tired and exhausted! I'm not going to lie. I'm sick of being sick. I'm sick of being in pain and so nauseous all of the time! Gastroparesis is beginning to kick my tail, physically and emotionally. I want to LIVE my life with my kids, but seem to be just here to observe and witness their lives. Don't get me wrong, I am grateful and blessed for the opportunity to see my kids happy and healthy! I would just love to return to LIVING WITH them and not beside them. This damn disease has started to break me. I have found myself pulling away from support groups. I still check in and out, but not connecting, reading, or posting as much as I once was. I still care dearly for the members and friends that I have met as a result of the Facebook groups. I still return to offer advice, support, ray of hope, and sometimes ask for advice or prayer myself. But not as often. Why? I ask myself this question daily. Maybe it's to protect my heart from losing others to death - there have been so many recently. Maybe it's to distant myself from hearing how so many are suffering like me, many much worse. Maybe it's to somehow "pretend" that Gastroparesis can improve and that I will be cured - though I understand more and more each day that this is unlikely through medicine alone. I try to leave my worries about healing in God's hands. To be honest, I don't know why I am spending less time in these groups. It very well could be that I am spending so much energy and time advocating on Twitter and other places, that I just don't have the energy to connect regularly on Facebook. I spend so much time, every day, trying to connect and spread awareness to those that may be able to help us! Twitter is less personal, but the connections are widely dispersed and appreciated. I hold hope that something as simple as a ReTweet from hospital, doctor, researcher, fellow GPer, etc.. can eventually hit a gold mine and improve the outlook for all that suffer with Gastroparesis. I have become an open book, when usually very shy. I share my personal stories with the world, in the off chance that someone will read it and be inspired and help us fight for better treatments and one day a cure to Gastroparesis. I don't hide the ugly part of this disease. I put it all out there so that other GPers can know that they are not alone, but also so medical providers and the general public can visualize the quality of life that we are struggling with daily. I'm not going to lie. Sometimes I feel like throwing my hands up, curling up on my recliner with a heating pad or in a hot bath, and just struggle in silence. I find myself feeling like giving up more and more. It would be so much easier. But I can't! There are too many suffering like me, many more severe, many younger - even young kids. I have to do what I can, to help get our message out. Researchers, Drs, Pharmaceuticals, and the public HAVE to learn how awful Gastroparesis is, how it impairs our lives, and the urgency of finding better treatment options, or better yet a cure. Giving up may be an option, it may even seem to be the best road to take at times, but I know in my heart that I can't take that route. I'm a fighter and will continue fighting for others as well as myself. I have met some amazing people as a result of this illness. When I am at my lowest, someone always steps up and inspires me to continue the fight for awareness. Sometimes it's as simple as a Retweet/Comment from a friend or someone completely unexpected. Today, it was a video created about Gastroparesis from someone that doesn't even have GP. Mr. McKim accepted the challenge of learning how debilitating this disease can be and chose to join our awareness movement with an amazing informational video. https://youtu.be/OMyaT6uxrTc
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Like it or not, when dealing day in and day out with a chronic illness (In my case, Gastroparesis.) one learns very quickly what the people around them are truly like. People that I looked at as "friends" are no where to be found. Very few of them care to contact me, even by FB messaging. Very few choose to "like" or more importantly read what I posts. Cute pictures or corny jokes are seen and shared by many, but serious articles or even awareness videos are ignored. If it's not the cheery, happy me - my "so called" friends just disappear. I try to persuade myself that it's because they don't want to bother me or because they don't know what to say, but a simple little "How are you? or Thinking of you" FB message or email goes a long ways. The truth is - they are not my "true" friends, they're just nice people I came to know across my life journeys. My truest friends are very limited, and that's okay with me. It's better to have a few close "real" friends, than many that are "just there when times are good" friends. Having a chronic illness has definitely made me rethink and ponder over the relationships/friendships that I have. I honestly have found out the true colors of so many. Now that I see the "real" them, I don't have to pretend anymore. I don't have to worry about offending or hurting anyone's feelings, as they will probably never read my postings anyway. I am very appreciative of the new friends I've met along this crazy ride. Connected by fate, possibly. Knowing I can say anything and they are there to support me. If I am quiet and not posting during the day, they are checking on me to make sure I'm ok. If I need someone to vent to, they are always there, as I am for them. What's ironic is that I am closer with a few friends I met recently online, than I am with the ones I've spent years and years of my life with. Thankfully, my family has been wonderful! Their true colors appeared as well. They are here, unconditional love flowing, caring enough to take me to medical appointments, sometimes 3 times in a week. They have come together as a team to help me receive the best possible medical care I can. Yet another death in our Gastroparesis Community. She was young and should have been full of life, only 30 years old. I did not have the pleasure of knowing her, yet many of my friends did. So heartbreaking and morale sinking. We keep fighting every single day to bring awareness to our disease, no matter how bad we feel, we still keep fighting. It's scary. I know that Gastroparesis doesn't kill by itself; however complications such as malnutrition, dehydration, organ failure, line/tube infections, etc are created from Gastroparesis. I can't help but feel defeated.
Yet another medical provider telling me that I am not getting enough nutrition, too dehydrated, and lack of energy needs to be corrected. She believes that I need IVs to "reboot" my system. I personally don't have the energy to sit in an ER dept for HOURS face the reality that they will not want to give me fluids. I see my PCP next week, so we shall see if fluids are suggested/offered or if I continue on the "wait and see" approach a little longer. Yet another medication issue. Finding a pharmacy that could compound it was extremely difficult. Finally found a place about 45 min away from my house and can pick it up later this week. That's ridiculous! Driving 45 min to pick up a prescription and 45 min back home. Yet another day of fighting my symptoms, fighting with every ounce of strength, just to survive the day and return to bed in hopes of rejuvination. How is it possible to disappear or fade right before others' eyes, especially when I try to offer so much hope to others?
The past few weeks have been horrendous for me. Constant fatigue, abdominal pain, and nausea. Yet, I kept trying to help others see that we can fight together and help each other out. I urge and persuade others to join our fight daily and convince them to never give up - when I myself want to give up at times. Why is it so easy to give advice to others, offer comfort, and give a purpose for moving forward - when I am just like them, struggling to survive? Emotionally, I have been very torn lately. I love the members in my online support group, but have questioned rather or not I need to stay. I have considered leaving the groups, just to protect my own heart. It is heartbreaking to hear story after story about how Gastroparesis impacts their lives physically or emotionally with lack of support from their families, friends, and in some cases their medical team. It is devastating to hear of members dying as a result of complications from this disease or children that are suffering along with us. I feel their pain in the depths of my soul, as I too suffer with the day in and day out reality of GP. I feel so very fortunate to have a great support team of family, friends, and medical providers. Yet, even with the sadness I feel reading their stories - I am able to see a ray of hope. Why? Because the comments and stickers that follow are so genuine, positive, and encouraging. It's truly amazing! Even when we are having a difficult day, we are able to build someone else up. We are able to inspire each other, with the very words we need to hear ourselves. I don't understand why that happens, but it does. And the friendships formed as a result are amazing. There is no way to put into words how meaningful these friendships can become. Especially, when you are able to connect not only over Gastroparesis symptoms, but life in and of itself. There is no way possible that others dear to us can truly grasp what we are experiencing, so finding others who can relate, is a gold mine. So when it comes down to it - I have to take the risk of heartache and sadness, as these very people, these friends, are the ones able to catch me and hold me up when I am falling to pieces. These moments are the fuel to keep me fighting for all afflicted with Gastroparesis. My family is great, don't get me wrong, but there are times when I have to "pretend" or "hide" how I feel as to not upset them. I know they mean well, I truly do, but I feel so guilty when they are saddened because of me. I don't want them to worry about me, I will be alright, eventually. Some days are better than others, but I will survive and fight- mainly because of my kids and them. The sadness in their eyes and the tears shed on my account, are not what I want to see when I look at my kids, husband, or parents. I need them strong. I need them hopeful. Their strength lifts me up. So therefore, I too, have to portray strength and faith. So how am I disappearing in plain sight? The weak and broken me eventually disappears, if only for a short time, as I pretend to be strong and have it all together in my family's eyes. At the same time, hanging it all out to dry with my friends online as we share our stories and encourage each other, also helps the worn and torn me disappear into hiding for a while. From there the hopeful and powerful spirit in me emerges to continue this fight and continue advocating to help improve our physical health and well being. Gastroparesis will NOT win! We WILL make Gastroparesis disappear right before our eyes one day. Hopefully sooner than later. Gastroparesis is a debilitating disease that negatively impacts our lives. With the help of friends and our families we created a YOUTUBE video to help spread awareness! I hope you will take the time to watch this video with inspiring music from Rachel Platten. See what exactly we are fighting to regain! You may be surprised.
Gastroparesis Fight https://youtu.be/ezWsFDll_Vw via @YouTube (In memory of another GP friend lost. In honor of all of my fellow fighters.)
Broken-hearted, tear-stricken face Is everyday nature when running this race. Striving to move forward, regardless of pain. Hoping somehow, awareness will be gained. Sharing our inner most thoughts and feelings. Praying eventually we will find some healing. Gastroparesis is relentless, always in our way As we try to keep "living" each and every day. The nausea, the pain, the fatigue are constantly here. Life passing us by, is our greatest fear. We try to be normal, we try to have fun. But it doesn't take long for our bodies to be done. We try to be strong, keeping everything under control. Yet most days just surviving, is our number one goal. We smile, laugh, and cry each day with our friends, Never knowing when death will take one home again. Losing close friends, that were always there Makes Gastroparesis even harder to bear. We could try cutting ties in order to protect our hearts, But these are the friends whom are there, when we are falling apart. Our friendships bring comfort, when we are sad and allow much needed venting, when we are mad. Our friendships are real, we become so close As we understand each other, better than most. So as another Warrior gains their angel wings, We must keep fighting together, to see what the future brings. Let not our friends' passings, bring us down. Let not our sorrows, allow us to drown. Instead, stand tall as we show our pride And fight this fight, we must not hide. We will triumph and we will succeed, A helping hand is all that we need. Better treatments are not that far away We just have to keep fighting each and every day! So take my hand, we'll make our voices heard! Gastroparesis WILL one day be cured! © 2015 Trisha Bundy ALL RIGHTS RESERVED Those of you that have read my previous blogs are aware that I try to keep a positive outlook. While sharing my honest experiences and thoughts, usually I can add a spin to find the "silver linings." Today is not that case. Today I dare you to take an inside look at Gastroparesis and the pain it creates in ones' life.
Gastroparesis is an individualized destructive disease. Everyone is different, yet the pain is still there. My journey with Gastroparesis began in mid-Feb 2013 and will continue until someone is able to come up with a cure or at least better treatment options. Instead of writing about my entire journey, I am going to break it down to the different kids of pain that I have to endure on a daily basis. Please note, words can not draw the most accurate image. Everyone's pain is different, some better managed than others. Some similar to mine. And yes, some much more severe than mine. The passage will hopefully give you an idea of how disabling Gastroparesis pain can be. Upper Abdominal Pain For me, this pain is an unbearable hard to breathe nuisance. It occurs whenever I try to become brave and eat or drink "real" food. Something as simple as a couple crackers, cup of delicious hot chocolate, a slice of grilled toast, or a bite of scrumptious cheesecake can send me into almost immediate pain. This isn't a "normal" little stomachache that last a few minutes, or even an hour, and then goes away. A flare can last continuously for days, sometimes even weeks, without a break. The pain is horrendous, keeping me unable to function. Trying to hold tears back while also attempting coping strategies. And as if the pain isn't horrible enough, bloating and nausea usually accompanies it hand in hand. Eating something as simple as ONE banana can make me spend days feeling like I have majorly overeaten at a buffet and contracted food poisoning. Only the pain and nausea doesn't pass anywhere as quickly and was only over a small amount of food or liquid. Some of my friends also have distention, luckily I don't. They can eat a few bites of food and their stomach will literally expand. One minute they are thin, the next they literally look and feel like they are 9 months pregnant. Lower Abdominal Pain The pain in this region is also continuous and accompanied by bloating and intense nausea. I have no control over pain in this region. It doesn't matter if I choose to eat or drink a little something or not. I seem to constantly have consistent pain here. It can be a nagging dull pain at times to intense fetal position pain at others. If I had to rate it on a number scale, I would say that I am always at least a level 4 on the pain scale, with varying degrees higher as the day goes on. I am unable to receive adequate nutrition orally due to my upper abdominal pain issues. As a result, I am dependent on a GJ feeding tube. (I will describe my feeding tube in the next section.) Through-out the day, I am required to run formula. Running the formula, creates more lower abdominal and intestinal discomfort and pain. Usually, I can handle the pain of this region first thing in the morning. However, as the day progresses so does my pain. Unfortunately, I don't have a successful remedy. The nausea medication and intestinal cramping medication that I use throughout the day, (Both are at their highest dosage avail and can only be taken every 6 hours) only last for about 3 to 4 hours. While they do offer some short-term help, they create new issues and later pain in the form of severe constipation. My doctors and I are still working together to figure out the best medicine regimen, weeding out those whose benefits don't outweigh the benefits. Sometimes, I am lucky and suffer the pain in the lower abdominal region solely on it's own, but other times I have to suffer the pain of both the upper and lower region together, with relentless nausea regardless. Feeding Tube Pain I don't know how many of you are aware of feeding tubes. I have a GJ feeding tube. The G portion enters my stomach. If my nausea and/or bloating is really bad, sometimes I can get lucky and "vent" my stomach. This means I can allow the contents of my stomach to run out of the tube into a cup or the sink. I have been instructed to be very careful with this, as it can cause electrolyte problems. I resort to venting only when my nausea has me at the point of vomiting and/or heaving. The J portion of my tube, enters my small intestines. This is where the formula that is pumped in my body goes. Currently, I am running my formula at 30-35 ml/hour for about 9-10 hours a day. This is my sole nutrition. I am unable to run it any faster or longer, as the pain becomes to awful and unbearable. Besides the intestinal pain and cramping. I also have sporadic pain around my tube. The stoma (the hole under my breastbone for the feeding tube) sometimes becomes extremely sensitive and irritated. I have to be careful to ensure that it doesn't become infected. (I have heard horror stories about the pain and life-threatening nature of infections around and/or in the tube site.) The stoma pain is rough, but thankfully I can usually find measures to improve the cause of pain and shorten the duration of time. Every 3 months, unless sooner due to unexpected issue, I have to have my feeding tube replaced by Intervention Radiology. The procedure itself isn't too bad, I have conscious sedation, though I am usually sore for a day or two. All Over Pain As a result of receiving inadequate nutrition and fluids, even with a feeding tube, I stay dehydrated and occasionally have vitamin deficiencies. Therefore, I must deal with all over muscle pain, cramps, and fatigue. Even though I have a regular sleep pattern, I do not always wake up refreshed. I toss and turn during the night on most nights, due to the unwanted nausea and abdominal pain. The dehydration also puts a wear on my body. It makes me feel very weak, tired, and creates restless arms and legs. It causes additional intestinal issues, as well, such as constipation and possible colonic inertia. Both of which add to even more crampiness and razor blade pain with defecation. Additionally, the dehydration causes concentration issues, lightheaded/dizzy spells, and heart palpitations. Emotional Pain I can't even begin to make you understand the emotional pain that I endure as a mother, patient, and friend thanks to Gastroparesis. It's truly too difficulty to explain, but I will try my best. As a mother, I always felt like I had to be strong for my children. I still do, though my vision of what strong means has been altered. I used to believe that being strong meant showing my kids that everything was under control. However, having gastroparesis has proven to me that being a strong mother means showing your kids that things are not always under control. Sometimes we have to be strong enough to ask for help. We have to be strong enough to accept help from others. I have realized, and hope my kids have as well, that strong mothers have unconditional love for their children and will always fight the battles worth fighting, by never ever giving up. Being a mother isn't easy. I worry about my children, it's only natural. It pains me to see them hurt. Unfortunately or not, when I see them hurt, I hurt too. I hurt when I see their disappointment and the tears in their eyes, because they feel helpless from being unable to help me with my physical pain and struggles with gastroparesis. It is so painful to see them create a special magic hug or piece of art to try and help me feel better only to see no change. It's heart-wrenching to see them tell me they understand if I can't make it to a ball game or special event, when I know how important it is to them and how badly I want to be there. I feel emotional pain, sadness, guilt knowing that they themselves are missing out on exciting vacations because I can't handle physically handle them. Painful tears slide down my face as I hurt for the energy and strength to actually play outside with them and create fun life-long memories before their childhood years disappear. It's painful as a mother to realize that before long my kids will be on their own, and be left with memories of me as a gastroparesis patient in pain instead of a mom that actively enjoyed life with them. Not only do some of my friends and I suffer from physical and emotional pain brought on as a result of gastroparesis, but we also have to deal with numerouse medical providers. I will not deny, my personal GI and PCP doctors have been and still are phenomenal. (Though a little afraid about who my next PCP will be after mine moves out of state in the next couple of months.) I have been very blessed with having some open, respectful, and knowledgeable physicians. Unfortunately, that is NOT the case for all. I hear complaints every day about the experiences that they have with their doctors. Some many physicians, including some of my ER/Immediate care doctors, just don't "get it." Either they are unfamiliar with what Gastroparesis is, unfamiliar with how to treat it, or unfamiliar with it's debilitating nature. It is not uncommon from someone living with Gastroparesis to be told from their doctor that it's all in their head, that there's nothing wrong, that the pain is not real, that they don't know what else to do, that they have run out of options, or that they simply can't help them. I hear about it EVERY DAY in my support groups online. In my groups I have witnessed the confusion, loneliness, and heartache of not having supportive doctors. I have witnessed and experienced the darkest hours of this disease, the feeling of being alone, being a burden, or being helpless. Luckily, I was rescued from those deep waters. God, family, and new online friends rescued me. I know that there is hope. I am in this fight and I will NOT give up! Unfortunately, others are still struggling, still drowning. I do my best to help and I share their pain. I can't describe how difficult and painful it is to hear others talk about struggling to survive, but still can't find a helpful and compassionate doctor. The pain and anguish is an even higher magnitude when kids and babies are the ones struggling with Gastroparesis, yet unable to receive appropriate treatments. My heart also aches each and every time I hear of someone that has lost their life to Gastroparesis complications; Many have died from (but not limited to) malnutrition, infections leading to sepsis, organ failure, and even suicide. Why is this? Why is Gastroparesis not talked about more? Why are prescriptions that so many need to survive their day to day life, becoming harder and harder to fill? Why are government agencies unable and unwilling to see the patients for who they are behind the prescriptions? Shouldn't doctors and patients (if needed the patient's family) work together to make the best possible medical decisions? These important and life altering decisions should not be made by government agencies or insurance companies that aren't aware of the patient or medical needs. I am in this fight not only for myself, but also for all adults, children, and babies that have this awful debilitating and painful disease, Gastroparesis. We will fight to exist! We will fight to live! We will fight to be recognized! We will fight for better treatments! We will fight for a cure! Will YOU help us fight? When you're having a bad day, or a long week--how do you relax, recharge and reset yourself?
My ideal day in? Now that's an interesting topic that has changed over the course of the past 2 1/2 years. Fighting the life-altering disease, Gastroparesis, has changed how I view "ideal days in". If I went back to the time period before I became chronically ill, I would relax at home by spending time with my children. If I had a bad day or an exhausting week, I would recharge my body and mind by playing baseball or basketball outside in the yard with my children, taking a trip to the beach, fishing, and if warm enough swimming. My nights would be spent watching a movie with the family. Now rewind to 2 years ago - shortly after my Gastroparesis diagnosis and feeding tube placement. During this time, I was still dealing with symptoms of nausea and abdominal pain - but otherwise "living" life pretty well. I was able to teach, attend children's sporting events and practices, and take vacations. To relax, I enjoyed spending time outside watching the kids play and/or swim, playing catch, watching movies, and even a little fishing. All of these activities kept me busy, but allowed me to distract myself from my health condition and everyday stresses. On days that were more difficult physically or emotionally, I would curl up on my couch and read a book or take a nap. Now, bouncing back to the past 8 months, my life has drastically changed. My symptoms have increased drastically. I am in constant fatigue from fighting never-ending nausea. My abdominal pains continue, some days worse than others. Now my intestines have decided to join my stomach and not work properly, which is awful and tiring. My nutrition is non-existent as well. I struggle daily to receive any nutrition, even from my tube. Due to lack of nutrition, I have been limited by my Dr. to 5 min only rides on my stationary bike. I have been out on medical leave ever since my last hospitalization at the end of Oct. Not being able to return to work was very depressing until I discovered the best ways to cope with the situation, which will hopefully change before the new school year rolls around. It's strange how things change. Just a few years ago, I looked forward to days/weekends when I could just relax at the house, sleep in, watch movies, and spend time outside with the family. Now, I'm unable to work or play outside, at least until we can figure out how to convince my body to tolerate more nutrition. An outsider, looking into my world, would perceive that I spend all day everyday at "rest". When in actuality, I very seldom rest or better yet, recharge. To keep my mind mentally strong and away from depression, I spend the majority of time on my computer advocating for Gastroparesis awareness and trying to help others in numerous Gastroparesis and Feeding Tube Support Groups. It's crazy how "working" actually helps me "rest" better than "resting" right now. However, this "relaxation" technique does not always work, especially on my "really rough" days. On those days, I curl up on the recliner with a heating pad on my abdomen and Contemporary Christian Music playing through my ear buds. If that doesn't work, I will try taking a long hot bath, while listening to music. Sadly, I sometimes have to just let the tears roll until things improve and then pick up the pieces and try to relax after the worst is over. When my children are home from school, I do my best to spend time with them whether it's watching movies on TV or just talking. If I'm having a "good or decent" day you may find me sitting outside in the sun, attending their ball game, grocery shopping, going to a movie, or even going to a restaurant with them. (Unfortunately, I seem to be having too few of the "good" days and if I'm not careful living a "good day" can consequently quickly change to a rough day.) So as you see, my life has drastically been changed as a result of Gastroparesis. I have had to learn by trial and error how to best relax nowadays. And apparently still have a lot to discover. |
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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