Below is the article I wrote for HealthiVibe.com
My name is Trisha and I am sharing my personal story to give you an inside look at what it’s like living with this awful and misunderstood disease: Gastroparesis.
In early February 2013, I became sick with what we thought was a common stomach bug. I was unable to eat or receive an adequate amount of fluids orally. Due to the severe abdominal pain, nausea, vomiting, dehydration, and fatigue, I progressively got weaker. I spent months seeing various doctors and specialists.
On the morning of April 22, my husband was fed up and took me to the nearest university hospital. After seeing that I couldn’t even keep a cracker down, they admitted me for testing and diagnosed me with Gastroparesis. I went home the following week on a liquids-only diet. Unfortunately, I was unable to drink an adequate amount of fluids, became dehydrated, and began having trouble with side effects from one of my medicines. Once again, I had to return to the hospital as an inpatient. It was obvious that I had to receive nutrition; and it was clear that I would not be getting it orally.
In May 2013, I had to resort to having a GJ feeding tube placed. The feeds run for hours directly into the small intestine. Over the past 2 years, not much has changed. I still depend on my feeding tube for nutrition today. I have tried a variety of medicines to manage my continuous symptoms of nausea, abdominal pain, fatigue, dehydration, lightheaded/dizziness, and vitamin deficiencies without much success. The past 6 months have been very difficult for me physically and emotionally since I have had trouble tolerating my feeds and the non-stop symptoms. I feel as if I am in a race for my life.
Fighting an invisible illness like Gastroparesis (GP) is exhausting. Every day is a new day, some better than others. I am blessed and lucky to have a pretty good support team consisting of God, family, and GP friends. My support team is always there for me when I need a quick pick-me-up. They are always trying to keep me in the race when I no longer feel as if I can keep up. I have come to depend on them and expect them to be there for me no matter how small or big of an emotional adjustment is needed.
This past January (2015) I hit an extremely low point in my personal life. I was falling laps behind my counterparts and quickly falling farther and farther behind, drowning in my own sorrows. I was feeling defeated both physically and mentally. I wanted to be able to return to “life” again. I had expected to be strong enough and able to return to teaching, my passion.
Fortunately something unexpected happened. I was invited to join an advocacy group. Really? How could this actually help me? How could I possibly help others when I couldn’t even help myself? Following my heart, and ignoring my doubts, I joined this new group, which we named Gastroparesis: Fighting for Change. We immediately had a vision before us; we were going to teach the public about Gastroparesis.
Thanks to the advocacy group and my new friends, I was ready to face the Gastroparesis race once again. I was tired of sitting on the sidelines. Slowly, but surely, I began to heal emotionally. Becky introduced me to her amazing support group and Melissa gave me the confidence I needed to face my fears and bring awareness to Gastroparesis. Even though physically I am pretty beat-up and my body feels like it’s literally falling to pieces, my spirit has been lifted and is running once again. I am laps behind ordinary people, yes, but I am still in the race, and that’s what matters. That’s what kept me going and continues to keep me going today.
Sharing my personal story has opened my eyes and has allowed me to see myself in a different light. It has ignited a spark that’s empowering. I recently took a moment to step back to reflect on how writing and sharing stories could be helpful, and I realized in that moment that a simple task, like sharing our stories, helps others suffering with Gastroparesis by letting them know that they are not alone. Being an advocate has led me to realize that we are not alone and we are not going to receive better treatment options until we unite and demand to be taken seriously. Gastroparesis is not a stomach ache that comes and goes, but until awareness is brought forth, until the ugly truth about Gastroparesis is told, until people and doctors can comprehend the day-in and day-out struggles of living with Gastroparesis, we will continue to be overlooked and have very limited, ineffective treatment options. We have to stay strong and continue to race with all of our imperfections, scars, and damaged bodies or we will be left out on our own and forgotten.
Gastroparesis Scoop (newsletter of information, articles, videos, etc all related to Gastroparesis. Information is updated often and can be followed)http://www.scoop.it/t/gastroparesis-by-trisha-high-bundy
Follow me on Twitter @bundytr5
Taking a look into the rear view mirror of our life. We've all been here at one time or another; Looking back to see what we could have done differently in our life. Would it have changed our outcome? Would it have made things easier? The truth is that we never know for sure.
Today, I am going to share with you what I wish I would have known at the beginning of my Gastroparesis Journey. For those that have already embarked on this journey, you may be able to relate. For those just beginning with their diagnosis, maybe this will help you.
Looking back, I wish I had known that there is nothing wrong with me. Having Gastroparesis is NOT a sign of weakness. People from all different walks of life have Gastroparesis. I did nothing to cause it. There's nothing I could have done to prevent it. It's just one of those things that happened. Possibly part of God's plan to get me to where I am today. So why, a little over 2 years ago, was I so ashamed? Why was I afraid to talk to people about it? Why did I try so very hard to hide my illness from other people? Wearing the "I'm ok" and "nothings wrong" face used up so much of my energy, yet I was determined that I had to pretend everything was alright and that I was so strong.
I wish I would have known that I was not alone in this battle. I wish I had known that there were helpful online support groups. Feeling alone and isolated, may be part of the reason I put up a fight to hide my illness. When I was diagnosed, I was not aware of support groups and could find very little if any valuable information on the internet. Doctors, especially in my hometown or in the ER , weren't even familiar with Gastroparesis and the best treatments. I didn't have anyone to talk to about what was happening or how I felt. I didn't have anyone that truly grasped what I was dealing with. My family tried to be there for me, and they still do, but they didn't truly understand. It hurt feeling like I was the only one who knew how awful I felt. It hurt feeling like I was not being heard or taken seriously. I was in misery all alone and by myself, but I'd find out later that I didn't have to be.
I honestly felt how hopeless one can feel. Even though I personally never considered suicide, I could see how other's have, and that's one scary feeling. I have felt so low and in so much pain that I just wanted it to end, no matter what. I felt like I was such a burden on my family and even my kids and sometimes believed that they would be better off without me. I know that's not true, but it's amazing the things you think and feel when you are fighting a battle alone.
I wish I had known that carrying around my backpack with feeding tube didn't change who I was. I was extremely self-conscious about my feeding tube to begin with. I did my best to not wear it in public or try to mask it. I felt gross and like a freak of nature. I had a love hate relationship with my tube, still do at times. I was disgusted with having a tube inserted in my body. I thought that having this tube was disgraceful. I felt less human. But why? Why was I so determined to be "normal"? What is "normal" anyway? Didn't I know that everyone has their own battles and that there is not a perfect "normal" around?
I wish from day one of my illness and especially at the point of diagnosis, that I had more coping skills to help me get through each day, each episode, each flare. Knowing how to accept the illness, find comfort in music, relaxation with a long hot bath or using heating pad, relief by talking or writing about my ailments, etc. It would have been nice to have been able to successfully apply these coping skills earlier.
In retrospect, as I look in that rear view mirror, there are things that I wish I had known or recognized earlier. But if given the chance to change them now, would I? I don't think I would. I want others to know they are not alone, not less human, not at fault, not weak, and that there are resources available. I want others to be able to find and apply coping skills to decrease their struggles. However, I wouldn't change my past. Why? Because these experiences, thoughts, and feelings helped me become who I am today. They set forth the path that I believe God has intended for me. Feeling isolated, having difficulty finding resources, feeling ashamed or like a freak; they all helped inspire me to help others. If I had not lived through those experiences, I wouldn't have met Melissa. I wouldn't have become involved with advocacy or better yet, never even considered advocacy. I wouldn't have found passion in sharing my story to help others, fight for awareness, or demand more resources and better treatment options. Now, I know that I can be strong without pretending. Strength is shown by sharing my story, by helping others, and being real. Through my struggles I found myself. I found an outlet for my frustations: Advocating via blogging, emailing, Twitter, Facebook, support groups, etc.. Nothing is going to stop me. I have a spark and determination within me. Yes, the debilitating and horrendous symptoms of Gastroparesis may knock me down, may even try to hold me down, but I WILL get back up. Even if it takes a few days or weeks. I will no longer sit in silence! I completely grasp loneliness, and I will do everything in my power so that others don't have to realize that feeling. I will NEVER GIVE UP!!
My closing remarks and advice for those newly diagnosed with Gastroparesis, or any other chronic illness is that there is no reason to hide who you really are. You are You, and there's no one ever exactly like You. So be the real You and great things will happen. You are NEVER going to be able to please everyone, or make everyone happy. So be true to yourself and happiness will be discovered. Learn from your experiences, allow them to make you stronger. Remember that you are never alone. Reach out for a helping hand when needed. When possible offer a helping hand to others. Find a way to have your voice heard. Whether it's social media, writing, singing, talking - you have a purpose and you have a message. Use it. You will be amazed how better you will feel mentally and emotionally. You will have difficult days. You will have days you want to give up. And that's ok! Just hold on hope and stand back up. You are a warrior, you are a fighter, you are a crusader - just like me!
So, yeah if you're reading my post, I thank you. Your support is appreciated. I don't want to hurt your feelings, but this post isn't about you. Sorry, this post is about a very well-loved, can't imagine my life without, there for me ALL the time, helps me relax, rarely let's me down blessing. What could it be you ask?
My Heating Pad!!
Today's writing topic, as part of the WEGO HEALTH CHALLENGE is to write a product review.
"What’s your favorite health-related product? Share it with your community and tell them why you love it so much and how it has helped you on your patient journey." #HAWMC
In all honesty, I should write about my feeding tube and pump, since it's what keeps me living by receiving some sort of nutrition, no matter how small. Though I am very thankful for it, it can also be a hassle. My heating pad, well warming throw, has a more positive relationship.
Sunbeam Warming Throw
My soft gray warming throw has provided me with a lot of comfort whenever Gastroparesis is pulling me down. Countless days, I have had it wrapped around my abdomen and lower back with heat level on high. The heat from the throw can help me feel cozy and warm when I am tired and withdrawn. More importantly though, the throw can lessen some of the abdominal pain and discomfort. No, it's not perfect and unfortunately it is not magic. It doesn't completely take away the pain, yet can help the muscles relax and help "mute" some of the pain. It is not uncommon to have this trusted throw working against my discomfort for 5 hours or more each and every day. I would be lost without this amazing health product.
My warming throw is not perfect, though. If I had my choice, it would be cordless, so I could walk around with it on my abdomen. As it is now, I have to disconnect and take it off (so sad) whenever I need to be away from my recliner. The only other thing I would change, would be to make it get hotter without burning my skin. I have used it so much that my skin has become accustomed to it. While it still provides much needed relief, it just doesn't feel hot anymore.
In conclusion, I am very appreciative of the Sunbeam Warming Throw that my husband purchased for me. The heat helps numb some of my abdominal pain and discomfort, while providing much needed cozy comfort.
HOPING TO REACH
EVERYONE WITH GASTROPARESIS!
ATTEMPTING TO END LONLINESS CAUSED BY GP!
LETTING EVERYONE HEAR OUR STORIES, BY USING
TWITTER, FACEBOOK, INSPIRE, BLOGS TO NAME A FEW.
HOLDING ON FOR BETTER TREATMENTS, OR BETTER YET A CURE!!
Bye, bye, bye…
Living witsh an illness, you are more likely to face people who don’t understand your daily struggles. Sometimes, these people can be inconsiderate and hurtful. Have you ever wanted to tell them how you really feel, but didn’t feel like you were able to? Now is your chance! Write an open letter to the people who have hurt you. What would you say to them? What lessons would you like them to learn?
I have been hurt and dismayed time and time again by ego-tistical doctors. My health is placed in their hands, yet sometimes they fail me. My letter today is directed toward two doctors that I hope I will never have again.
Dear Dr. A & B,
I am sorry that I ever had the opportunity to meet you. When I saw you this past Autumn you took my condition lightly. You never took the time to listen to my issues and concerns. You walked right into the room and passed judgement on me, never considering the true cause to my pain, nausea, and inability to tolerate tube feeds. You both came in my room preoccupied, literally staying for less than 5 minutes.
I met you in the emergency room after my first ever ambulance arrival. I had never had 911 called for me or been on an ambulance. I was in so much pain, even having difficulty breathing or moving. I was already frustrated, after the nurse rolled her eyes at me when I needed help changing to the gown. When you walked in you were told that I had Gastroparesis. When asked, you said that you were familiar with Gastroparesis. The nurse came in with your treatment choice, a GI cocktail. Shortly afterwards you discharged me with a couple prescriptions, both of which are NOT supposed to be taken with Gastroparesis. No thanks there. Not only that, when I was leaving I asked for a copy of my labs. Believe it or not, the had a lab value that was way off. What a joke! After emailing my GI, I was instructed to see my PCP as soon as possible to have the lab retested.
I met you 2 days later as inpatient. You walked in my hospital room. Before examining me or listening to me you told me that my pain, nausea, and inability to run tube feeds was a result of stress! REALLY! I could not believe my ears. In fact, I was lost and in tears. I know my body. I know when I am under stress or not. That could not be further from the truth. I was in PAIN, severe pain. I had been 3 days with no tube feeds. And you told me it was because I was stressed. I was blessed that you were only in charge of my care for 1 or 2 days. (My other hospitalists were great.)
I can not explain how belittled you both made me feel. I was suffering. I was in so much discomfort that death actually sounded like a good option. You both disappointed me beyond measure. I needed you to provide comfort. It is very difficult for me to trust and feel comfortable with doctors; And you both intensified my reasons for why I hold this distrust toward doctors.
Luckily, not all doctors are like you. There are some doctors that listen to my complaints, communicate with me about my needs, and honestly try to help me. Unlike you, there are some doctors that treat patients like real people and actually care! These authentic doctors were able to take my symptoms and form a real plan on how to improve my condition. What you thought was "nothing" or just "whining" actually kept me hospitalized for an entire week. During those 2 weeks I had no nutrition in my body, just iv fluids. They determined that I had gallstones and an inflamed gallbladder accompanied by a horrible Gastroparesis flare.
It was NOT just a stomachache and it was NOT stress. You both failed me and I hope I never have to meet your presence again. If I do, I hope you have a new outlook on how to treat and listen to your patients. Please take a moment to think about how you would like yourself and/or your family members treated by their doctors. And beware! I have become much more vocal about the treatment I deserve. I no longer hesitate. If I think you are taking me as a joke, I will let you and the administrator know. Patients should be treated like real people and not just a chart. Sometimes, just taking a moment to discuss the symptoms with the patient, guides you so much better than just numbers or notes on a chart.
I hope that you never have to experience the negativity that I faced under your care. Well, actually I take that back. I hope you do see how lack of respect from your doctor feels. Maybe then you can take a step closer to being a respectable doctor that actually improves their patients' conditions.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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