I have had gastroparesis for 17 years and chronic intestinal pseudo-obstruction for 10 years. One thing that 11 years of working with DTP patients has taught me is that when it comes to these challenges, nothing else matters that can drive a wedge between us. We may disagree politically, socially, and religiously. We have completely different lifestyles, morals, values, priorities, and backgrounds. We are all races, colors, ages, nationalities, and sizes. We couldn't be more diverse. However, it doesn't matter in the least. We are always there for each other because we need that.
We are all connected by one thing...very serious and debilitating health conditions that need a cure. We are so different, yet so much the same! We are connected in unique ways that no one outside of our shoes can possibly get. It's special. It's hard. We cry for those we have never met in person when they hurt. We laugh at and with each other. We know each other and each others families and learn personalities very well. We send each other cards during holidays, hospitalizations, and just random "thinking of you" days. We are close friends, even though most of us have never even met in person! When we get together there are no awkward moments! We already know each other and feel close! There are instant bonds. We are not strangers. We are family.
Thank you for being there for me through the good AND the bad. Thank you for not thinking less of me when I feel like giving up myself. Thank you for coming to rescue me when I am in need of support. Thank you, most of all, for allowing me to be part of your life and giving back to you too. Thank you for trusting me. Thank you for making me feel like my life does matter too. As long as we are alive, our mission is not done. Your life matters. Don't ever forget that! You can make a difference in the life of someone every single day. You have made a difference in my life today simply by sticking with me through this day of challenges and feelings of loss on many fronts. I love you all.
Monday, November 28, 2011
My life matters, yours does too! Make a difference!
You don't appreciate life as much until you've almost lost it. Once you are given a second chance, you really realize the meaning of it and how fragile it can be. So few people have the opportunity to re-evaluate life and the meaning of it.
My life isn't like "It's a Wonderful Life" in that I was never born, but I see it as if I have had the same opportunity to see what changes I can make to make the world a different place. I have learned this at a very early age. I appreciate life so much more! I get excited about the teeniest things that most people see as mundane and routine.
If something goes wrong, I'm normal and I DO complain, but I quickly try to straighten out. Problems are problems and they are tough. Life is tough. It is what it is. Some of us have been forced to tackle incredible challenges, while others have experienced a relatively normal life with relatively normal problems. But, we all have our struggles and I don't believe that anyone's problems are minor. They are all a big deal and have a profound influence on us. We grow through them, regardless of what they are. I want to hear about the struggles of everyone, regardless of how "minor" they may seem in comparison. I care about your concerns. They matter to me too! God must have really big, active, and perfect ears because He hears from me all the time!
People often ask me how I do it. How do I deal with so much? I don't really have any choice! No, it's not easy. No I am not always as strong as I appear to be or as I say. I'm just glad I'm still here to experience the problems and work my way through them. I am a stronger person for it. I get stronger all the time.
Going through a transplant is TOUGH. The process, the fears, the unknowns, the loss of others not so fortunate, the complications that arise, the complications expected to arise from long term-medications, and feeling lost in a world where people haven't had the same experiences. Trying to balance out my health life with any sense of "normalcy" like a job, having a family, living on my own, and having energy to spend time with friends and just hang out is challenging. I want to be "normal" in terms of life activities, but my body too often has its own plans. Some days I am too weak to get out of bed, while others I am energetic and ready to conquer the world. I never know what each day will be like. None of us do, but it's much more real and unstable for me.
I can be happy, jumpy, and feel well for half a day and be in the ER or hospital later that same day. I can look really good for a while, and then I crash out and can't move. I can be out driving, and then have to stop to avoid falling asleep at the wheel. I can feel well, then eat a piece of cheese or a few crackers and be sick the rest of the day. But, I am a fighter. I know I am strong.
I don't always feel strong though. Sometimes I just want to cry and cry and cry. I want to scream, throw pillows around, and shut out the world. Sometimes it doesn't seem fair. But life isn't fair. I don't know why I have been through all of this. All I know is that I can't imagine what my life would be like if I hadn't. What would I be doing? Would I be better off or worse off? Would I be as strong? Would God and relying on Him be as high of a priority in my life? I can't imagine my life any differently. I don't know it differently. Not that I wouldn't love to be functioning as my healthy friends and loved ones, but I'm not sure I really "miss" it because I don't really know what I'm missing out on. Maybe a day in the life of YOUR shoes would help me understand. But, I'm not sure I could handle the pain of experiencing a day in the life of an average person and really realizing what I have lost. Or perhaps, the pain wouldn't be as strong because I will realize what I have gained too. The things that you are missing out on because you haven't shared the good side of my experiences.
To the outside world this is horrendous. Yes, there are times that are horrendous and I want to give up, but I honestly don't know life any other way and perhaps that's one way I can cope. I've learned to adapt, change, and work through each new complication as it arises. I've had to become flexible. The fact is, God always comes through for me and gives me what I need to deal with each situation that arises. He will never allow me more than I can bear. When I feel like it is too much, He will always be there to supply all my needs. The feelings of His provisions when I am absolutely desperate and at His feet is something that can't be matched. Oh how He loves me so! He has been there for me in amazing ways over the past few weeks. I have felt His presence in the midst of some pretty tough challenges and He has brought me through in His own unique and loving ways.
What has this given me? I have to focus on that rather than what it has taken away. While it has robbed me of so much, it has given me so much more I believe that only a few people who deal with the same situations can obtain. Compassion unmatched by anyone who is not in my shoes. The opportunity to help others in ways I never would have had. I've met some incredible people who I can't imagine not being part of my life. I have matured and grown in ways that many people never do. I have an understanding and appreciation for the finer things that people don't notice. I love Mondays! Monday is another day of the week to cherish and live out the second life I have been given. It's not a day to dread!
I LOVE life. I say this all the time, but I LOVE LIFE! Even with its challenges, its ups and downs, discouragements, fears, overwhelming sadness, devastation, there is so much GOOD! Just look around you! There is so much to enjoy in life! So much to learn, so many people to meet, so many things to experience!
I LOVE people. I love helping people. I love being around people! All kinds of people! I used to not be as accepting of such a wide range of backgrounds, but now I LOVE everybody! I realize that everyone has a purpose in life. Some make bad decisions, some try to hurt me intentionally, some don't understand me, but it's ok. God loves everyone...EVERYONE. I strive to do the same.
It's so easy to feel useless in this world when you can't keep up with others or give back as much due to limitations. Your life matters. Whether you are homebound, unable to work, unable to give much back to society, whether you are brilliant or mentally challenged, a president or a pooper scooper, what you do is important. Somehow, somewhere, your life has had an impact on someone. That someone's world has been changed because of you. If that's all that you ever feel like you have accomplished in life, you have changed the world!
In a recent Carissaism I stated "Some people write and others speak. Some build and others destroy. Some see the glass as half-full, others half-empty. Many lead, others follow. Some are outgoing, others shy. Some are anxious, others calm. Some work ahead, others procrastinate. Some enjoy a busy schedule, others like to be free. We all have our differences. We don't always agree. But when we all come together, what an impact we can be!"
Make a difference in your world today! Even the simplest things matter!
My life isn't like "It's a Wonderful Life" in that I was never born, but I see it as if I have had the same opportunity to see what changes I can make to make the world a different place. I have learned this at a very early age. I appreciate life so much more! I get excited about the teeniest things that most people see as mundane and routine.
If something goes wrong, I'm normal and I DO complain, but I quickly try to straighten out. Problems are problems and they are tough. Life is tough. It is what it is. Some of us have been forced to tackle incredible challenges, while others have experienced a relatively normal life with relatively normal problems. But, we all have our struggles and I don't believe that anyone's problems are minor. They are all a big deal and have a profound influence on us. We grow through them, regardless of what they are. I want to hear about the struggles of everyone, regardless of how "minor" they may seem in comparison. I care about your concerns. They matter to me too! God must have really big, active, and perfect ears because He hears from me all the time!
People often ask me how I do it. How do I deal with so much? I don't really have any choice! No, it's not easy. No I am not always as strong as I appear to be or as I say. I'm just glad I'm still here to experience the problems and work my way through them. I am a stronger person for it. I get stronger all the time.
Going through a transplant is TOUGH. The process, the fears, the unknowns, the loss of others not so fortunate, the complications that arise, the complications expected to arise from long term-medications, and feeling lost in a world where people haven't had the same experiences. Trying to balance out my health life with any sense of "normalcy" like a job, having a family, living on my own, and having energy to spend time with friends and just hang out is challenging. I want to be "normal" in terms of life activities, but my body too often has its own plans. Some days I am too weak to get out of bed, while others I am energetic and ready to conquer the world. I never know what each day will be like. None of us do, but it's much more real and unstable for me.
I can be happy, jumpy, and feel well for half a day and be in the ER or hospital later that same day. I can look really good for a while, and then I crash out and can't move. I can be out driving, and then have to stop to avoid falling asleep at the wheel. I can feel well, then eat a piece of cheese or a few crackers and be sick the rest of the day. But, I am a fighter. I know I am strong.
I don't always feel strong though. Sometimes I just want to cry and cry and cry. I want to scream, throw pillows around, and shut out the world. Sometimes it doesn't seem fair. But life isn't fair. I don't know why I have been through all of this. All I know is that I can't imagine what my life would be like if I hadn't. What would I be doing? Would I be better off or worse off? Would I be as strong? Would God and relying on Him be as high of a priority in my life? I can't imagine my life any differently. I don't know it differently. Not that I wouldn't love to be functioning as my healthy friends and loved ones, but I'm not sure I really "miss" it because I don't really know what I'm missing out on. Maybe a day in the life of YOUR shoes would help me understand. But, I'm not sure I could handle the pain of experiencing a day in the life of an average person and really realizing what I have lost. Or perhaps, the pain wouldn't be as strong because I will realize what I have gained too. The things that you are missing out on because you haven't shared the good side of my experiences.
To the outside world this is horrendous. Yes, there are times that are horrendous and I want to give up, but I honestly don't know life any other way and perhaps that's one way I can cope. I've learned to adapt, change, and work through each new complication as it arises. I've had to become flexible. The fact is, God always comes through for me and gives me what I need to deal with each situation that arises. He will never allow me more than I can bear. When I feel like it is too much, He will always be there to supply all my needs. The feelings of His provisions when I am absolutely desperate and at His feet is something that can't be matched. Oh how He loves me so! He has been there for me in amazing ways over the past few weeks. I have felt His presence in the midst of some pretty tough challenges and He has brought me through in His own unique and loving ways.
What has this given me? I have to focus on that rather than what it has taken away. While it has robbed me of so much, it has given me so much more I believe that only a few people who deal with the same situations can obtain. Compassion unmatched by anyone who is not in my shoes. The opportunity to help others in ways I never would have had. I've met some incredible people who I can't imagine not being part of my life. I have matured and grown in ways that many people never do. I have an understanding and appreciation for the finer things that people don't notice. I love Mondays! Monday is another day of the week to cherish and live out the second life I have been given. It's not a day to dread!
I LOVE life. I say this all the time, but I LOVE LIFE! Even with its challenges, its ups and downs, discouragements, fears, overwhelming sadness, devastation, there is so much GOOD! Just look around you! There is so much to enjoy in life! So much to learn, so many people to meet, so many things to experience!
I LOVE people. I love helping people. I love being around people! All kinds of people! I used to not be as accepting of such a wide range of backgrounds, but now I LOVE everybody! I realize that everyone has a purpose in life. Some make bad decisions, some try to hurt me intentionally, some don't understand me, but it's ok. God loves everyone...EVERYONE. I strive to do the same.
It's so easy to feel useless in this world when you can't keep up with others or give back as much due to limitations. Your life matters. Whether you are homebound, unable to work, unable to give much back to society, whether you are brilliant or mentally challenged, a president or a pooper scooper, what you do is important. Somehow, somewhere, your life has had an impact on someone. That someone's world has been changed because of you. If that's all that you ever feel like you have accomplished in life, you have changed the world!
In a recent Carissaism I stated "Some people write and others speak. Some build and others destroy. Some see the glass as half-full, others half-empty. Many lead, others follow. Some are outgoing, others shy. Some are anxious, others calm. Some work ahead, others procrastinate. Some enjoy a busy schedule, others like to be free. We all have our differences. We don't always agree. But when we all come together, what an impact we can be!"
Make a difference in your world today! Even the simplest things matter!
The challenges of trying to merge two worlds
I live in a world that is different from most. I face a different reality than that of your average 31 year old. Mine is a world which is very real, a normal for me, yet poorly understood by the majority. It is a world in which my every attempt to describe it will not even begin to bring you close to understanding the impact it has in all aspects of my being. And while it is impossible for you to step even briefly into my world and get an adequate sense of my daily life, it is also impossible for me to step into your world and get a sense of reality in what is deemed to be normal in the average American lifestyle.
Since 1994 I have been challenged by something much greater than myself, human capabilities, and at times, I have even wondered about God. Being diagnosed with gastroparesis at the age of 16 was only the beginning of what would turn out to be both the biggest horror in my life and the greatest blessing as well. Since then I have been diagnosed with a number of other conditions which have resulted in six accounts of cardiac arrest, among other complications, and eventually led to total gut failure resulting in the need for a five organ transplant to save my life. What was intended to keep me alive for years, IV nutrition, eventually almost led to my death. I often wonder what my world would be like if I had never developed these conditions and my life went in another direction. What kind of person would I be? What would my passions entail? How would my world and the world of those around me be different? What would my perspective on life be? Where would my priorities lie?
Although I often ponder these questions, it is impossible for me to begin to fathom what the results would be. My life has been so consumed by fighting to get around in a world submerged in medications, doctors, hospital stays, plastic tubing, needles, artificial food, and that plastic tape that peels off all my skin cells when removed. I don’t know life any differently. Since my transplant my life within the medical system has improved, but will never be to the point of complete independence.
While no one has full control over his or her future or daily events, my activities are even more limited by something over which I have no control. My world is not managed so much by the hustle and bustle of daily affairs and the lives of those around me as it is by my own body. While my friends and family must manage the challenges of full-time jobs, raising families, and social activities, I must manage the frustrations of dealing with the ups and downs of living with a chronic illness. As they make plans for how to manage their time and various events, I am unable to make reliable plans due to the unknowns and changes within my health multiple times throughout the day. My schedule includes ensuring that my medications are taken on time, every time, and within a certain number of hours of each other. My daily routine will never be void of medical treatments, potential complications, and reminders that my world is beyond average. Unlike a vacation from work, school, or other events, I will never be able to take a vacation from my life as a multi-visceral transplant recipient. My life is dependent on the accuracy in which I follow a certain regimen. I must avoid many things that others enjoy such as gardening, certain foods, specific types of environments, tattoos and piercings, and certain jobs due to the chances of picking up infections. I have to be very conscientious of my surroundings and ensure that I avoid or limit the amount of exposure I have to certain people, animals, and diseases that may not affect the average person, but could severely threaten my life and health. An infection in me is not treatable by a simple oral antibiotic, but must be treated aggressively with IV antibiotics in order to help my body be able to better fight it off. Being a transplant recipient makes everything more complicated and dangerous.
In spite of living in a world which is filled with pre-cautions, uncertainties, and a daily focus on doing my part to stay well, I cannot live in a bubble. I refuse to live in a bubble. In spite of the fact that I recognize some of the things that I do to enjoy life could potentially be dangerous, I choose to do certain things anyway. I am not allowed to own a guinea pig due to the risk of developing rotavirus. However, I have had guinea pigs since the age of nine and my life would be incomplete without a little pal. I take risks when working around kids who may be carrying around an infectious disease that I could easily catch, but then my involvement with my church would not be in the positions in which I most enjoy and have been gifted to serve. It’s all a matter of weighing the positive and negatives, the pleasures against the risks, and the advantages with the disadvantages.
One of the hardest things for me to deal with is trying to acclimate myself into more of a normal world as my health has improved, while it is nowhere near to the point of being independent in what I do or free from a life of health complications and treatments. It is tough to deal with what is considered to be a “silent” or “invisible” illness. While I am glad that I often don’t look sick and my health problems are not overtly apparent to the public, it is also difficult to deal with the discrimination, lack of understanding, and blank stares of battling serious chronic illnesses while looking perfectly normal. Although undoubtedly I have many challenges, people often don’t understand the measure of impact it has on my world because I am able to walk, talk, breathe, drive, and generally have a positive approach to life and do normal things while rarely seeking assistance or accommodations unless absolutely necessary. On the surface, no one would even know the struggles I have within or the level of pain that I deal with every day. I make an effort to push myself in spite of being weak, tired, sore, or nauseous. In fact, sometimes I push myself to the point of knowing that I am physically no longer safe to continue what I am doing, but rather than seek help, I often work through my own solution, wait it out, or continue anyway. I recognize that these are not the best avenues to pursue in many cases, but it’s tough because I want people to see me as being normal and I want to do everything on my own.
I have discovered that although dealing with a chronic illness in my last few years as a pediatric patient and through college, that it is actually more difficult socially to manage it now. Upon meeting someone for the first time, the natural first question is: what do you do for a living? It’s an impossible question to avoid! Everyone works…right? It’s a great and normal conversation starter in most circumstances, yet in my case it stumps me almost every time. Immediately, any efforts I may have made to postpone or avoid being labeled as having a chronic illness are destroyed. While I am passionate about what I do and proud of the accomplishments I have made in life to this point, there is no way getting around explaining why I do it. And, to top it off, I don’t do it for a living. At the age of 22 and straight out of college, I was unable to work full-time and was approved for disability within two months of applying. But needing something to occupy my time and help others in the aftermath of months of depression due to the postponement of my dream, the pursuit of my graduate Art Therapy degree, I started what would become the world’s largest support group for gastroparesis. Within one year, I had used that to start the only non-profit in the world dedicated to fighting gastroparesis. Eventually, because the two conditions frequently come together, we expanded into chronic intestinal pseudo-obstruction.
Every time I am approached with that dreaded question regarding career, I try to respond in the most positive light possible, yet there is no way getting around the immediate identification of me as someone who is suffering from a chronic, very debilitating disease. My typical response is that I am founder and CEO of a non-profit organization which I run from my home for gastroparesis and chronic intestinal pseudo-obstruction, two conditions from which I suffered which led to a five organ transplant in March 2006. Although I try to leave it at that in the early stages of meeting others, naturally the term “five organ transplant” brings up even more questions and leads me into a very complicated, albeit ice-breaking, conversation. There’s just no quick or easy way to explain what leads up to a five organ transplant or any portion of my very long and complicated medical history! This question is then usually followed by the question of my living arrangements. It is difficult for me to explain that I am unable to be independent and live in an apartment in the basement of my parents’ home. It is often difficult to connect with others in my age group because their world is so different from mine. They are able to talk about their careers, often marriage and kids, rent or mortgages, co-workers, and other social events. These things are unfathomable to me! I can’t even begin to understand how a person can hold down a full-time job, come home to care for a family, attend and/or organize social functions, and keep up with regular household chores and shopping. I feel as if I have accomplished something in a day if I manage to spend a couple hours focusing hard on one project, or making a trip out to run a couple of errands.
Although I try to step into their world and understand what their lives are like, it’s impossible for me to relate so therefore I am often left speechless and unable to carry on a routine conversation. At the same time, they are unable to understand where I am coming from and that the world I live in is impossible to step out of. While a career, family, and common, everyday activities dominate their lives, my life is filled with things that few can understand. It can be a one-sided conversation. Since it is much more common to do the things that they do, I can connect to an extent with their stories, but when it comes to sharing my own experiences it’s just not the same. I often don’t know how to connect and it makes it difficult to get to know me for who I am, as an average person, just coming from a completely different perspective and a totally different life experience. It impacts everything and there is no way around it. I often feel left out of conversations because I am unable to talk about or understand things that are so commonplace for most people, yet they are also unable to relate to the things that are so commonplace for me. As much as I strive to maintain normal conversation and limit my health experiences, it is such a big part of my life and a huge part of who I have become, what I am passionate about, why I do the things I do and say the things I do, and why my lifestyle is as it is that I don’t know how to get around it. I certainly can’t go back and change those circumstances in order to achieve a better sense of normalcy, and there’s nothing I can do now to escape the realities of what I deal with on a daily basis and the limitations I still have. I often find myself desperately trying to dig up stories of times when some event in my life happened that was within the realms of normal...a college memory, an internship experience, or a G-PACT issue that puts me in the career path in a sense, but unfortunately most experiences are still tainted by the 15 years that my life have been so wrapped in the medical world. I can’t separate them. No matter how hard I try, I can’t. It’s all part of me and who I have become. Yet, for some reason, many people tend to think that I should be able to separate the two. It’s only natural for my jokes, comments, and conversations to somehow involve that aspect of my life because it has such a profound influence on everything that I do.
Not too many people my age understand the feeling of losing very close friends, most of whom have shared the same experiences as I have. It’s a scary feeling to watch as some of my closest friends who fought so hard with me continue to struggle, and in many cases, lose the battle. Over the past year, I have dealt with the loss of several very close friends due to transplant related complications. I have attended memorial services for other friends in years previous as well. Although I am personally doing well in comparison, no one but those who have been through the transplant process can understand the fears that I have and how I must manage those fears and frustrations on a daily basis. Although I am very optimistic and see my future as bright and fulfilling, I can’t help but deal with strong emotions when any situation goes awry in my life or that of my transplanted friends. I don’t dwell on these things by any means. I make every attempt to avoid looking to the past as much as possible, but I certainly can’t separate them from my life.
Having a transplant changed things for me. I see this life as separate and completely different from my previous one, yet they are still connected. I have different issues I must battle and the entire transplant process has brought me to a greater understanding of myself, God, love, my family, friends, overall suffering, and the incredible need to fight regardless of the odds and discomfort involved. However, pre-transplant complications led to the need for a transplant and it’s all part of the big picture. I often feel as if I am ten years behind my peers in many ways because I am unable to talk about regular life issues beyond my college experiences. Sometimes I feel as if this makes me immature, but then I recognize that I am far from it. I may not be able to relate on levels that society places in front of me as a way of measuring maturity…the expectations of supporting myself financially, being totally independent, and caring for a family, my maturity is far higher in other levels of life and understanding and certainly my lack of independence is not related to anything in which I have any control.
I know how to handle complex challenges and decisions that others my age have never even considered. I’ve had to write an advance directive, a clear indication that I recognize my mortality at any time. I’ve had to push through pain, near fatal infections, cardiac arrests, surgeries, the inability to eat, living without a small bowel for a year, and the fight back from a 16 ½ hour five organ transplant and its complications just to achieve the measure of health that I have today. I have had to learn how to manage all the emotions, frustrations, and fears that come with the whole process and dealing with much of it without the full understanding of those around me. My battle with that continues as I do suffer the effects of some PTSD as a result of some of the medication problems I experienced post-transplant that left me unable to sleep, speak at times, think, remember, control, or care for myself. I was terrified. What added to the trauma of this was the inability to express myself during that time and describe what I was experiencing to those who were trying to care for me. In spite of that, I have been able to overcome most of those memories and advance my life forward in an effort to focus on the future. While I am still haunted by those experiences, I have figured out how to cope when the emotions and fears hit and now I am able to lessen the impact they play in my life. These experiences have given me wisdom beyond my age as I am able to understand the challenges that come with managing not only physical problems, but the associated emotional, psychological, and spiritual challenges that so many people with chronic or life-threatening illnesses face. This has greatly enhanced my ability to work with the population in which I do.
Although effective as a leader and role-model in G-PACT before the transplant, my effectiveness has been greatly enhanced by my experiences and my drive to fight for others has become even stronger. I don’t get paid for what I do in monetary terms, but I am paid every day that I am able to make an impact on the life of those who are struggling and in need of knowing there are people out there who truly care and are fighting for them. My value as a human is not based on how much I earn, but how much of a difference I make in the lives of those around me.
Battling what I have and dealing with a future of unknowns never gets easier. It never will. I recognize that many of the medications I take and treatments I go through have consequences years down the road as well. It’s difficult at times to know that what is keeping me alive at this point may eventually lead to further complications. But I don’t let that rule my thinking or way of life. I can’t. Somewhere there is a family whose child died during an unexpected, catastrophic event and made the decision to give life to someone else during a time of mourning. I can’t let that family down. I have always felt it is my obligation to do what it takes to make that family proud to have given this gift and to see how their child has made an impact on the world.
The things that make my life so difficult are also the things that make me so passionate about life. Often, people do not understand why the littlest things are so exciting to me…an hour in the Jeep with the top off, spending a couple of hours with a friend, volunteer work doing anything for even an hour or two, and the need to cheer people up through any means I can think of, even if as simple as sending an online greeting card or a superpoke through Facebook! I enjoy meeting people whether online or in person and just getting to know them. It means the world to me to go out with anyone at all to eat or just hang out and chat. The ability to travel and represent G-PACT is exciting because I was unable to do that for years. I love being able to represent thousands of people who are unable to represent themselves. I enjoy things in life that many people dread or try to avoid. Even things I don’t enjoy I often find that I don’t mind doing because I have the capacity to do them…I am alive to do them. There are so many things I want to learn now that I never had an interest in before. I want to travel to so many places! I love life and am grateful for every day that I wake up!
Although it is trying to know that in spite of my efforts to the contrary, I will never be seen as “normal”, I recognize that I have been chosen for a reason to take on this task. My love and passion for God has grown and because I am unable to completely step out of my world and reality, it has given me many opportunities to share how the Great Physician has intervened in my life and given me more chances in life to serve Him. My story has encouraged others who continue to fight that there is hope as they have watched me come from the brink of death, unable to get out of bed, and not expected to live through the transplant, to someone who has recovered and found a way to fight back in a way that helps not only me in my attempts at coping and recovery, but all of them as well.
I recognize that not only do I owe it to my donor family to utilize every opportunity I am given and seek out others that become available, but I also owe it to my God who has clearly kept me in this world for a time because of some great purpose He has. Although His purpose is not always clear and my world is certainly filled with questions, frustration, and an ongoing struggle with inner thoughts, feelings, and fears, I know there is a purpose and it’s not in the future. It is something I am working towards fulfilling every day. So while I continue on in this constant battle of ups and downs, facing the unknown, and maneuvering within the unique and misunderstood world in which I live, I try to maintain perspective and recognize that I am not to be defined by what society deems as normal, but that God has given me a special environment in which to live and operate and a particular focus and gift in life that only those with my circumstances are given. When feeling frustrated by the inability to live up to society’s “norms” and not feeling fully connected with the typical world, I force myself to focus on how the world that I live in would be different if God had not given me the opportunity and abilities to work within it and make an impact in any way possible.
Since 1994 I have been challenged by something much greater than myself, human capabilities, and at times, I have even wondered about God. Being diagnosed with gastroparesis at the age of 16 was only the beginning of what would turn out to be both the biggest horror in my life and the greatest blessing as well. Since then I have been diagnosed with a number of other conditions which have resulted in six accounts of cardiac arrest, among other complications, and eventually led to total gut failure resulting in the need for a five organ transplant to save my life. What was intended to keep me alive for years, IV nutrition, eventually almost led to my death. I often wonder what my world would be like if I had never developed these conditions and my life went in another direction. What kind of person would I be? What would my passions entail? How would my world and the world of those around me be different? What would my perspective on life be? Where would my priorities lie?
Although I often ponder these questions, it is impossible for me to begin to fathom what the results would be. My life has been so consumed by fighting to get around in a world submerged in medications, doctors, hospital stays, plastic tubing, needles, artificial food, and that plastic tape that peels off all my skin cells when removed. I don’t know life any differently. Since my transplant my life within the medical system has improved, but will never be to the point of complete independence.
While no one has full control over his or her future or daily events, my activities are even more limited by something over which I have no control. My world is not managed so much by the hustle and bustle of daily affairs and the lives of those around me as it is by my own body. While my friends and family must manage the challenges of full-time jobs, raising families, and social activities, I must manage the frustrations of dealing with the ups and downs of living with a chronic illness. As they make plans for how to manage their time and various events, I am unable to make reliable plans due to the unknowns and changes within my health multiple times throughout the day. My schedule includes ensuring that my medications are taken on time, every time, and within a certain number of hours of each other. My daily routine will never be void of medical treatments, potential complications, and reminders that my world is beyond average. Unlike a vacation from work, school, or other events, I will never be able to take a vacation from my life as a multi-visceral transplant recipient. My life is dependent on the accuracy in which I follow a certain regimen. I must avoid many things that others enjoy such as gardening, certain foods, specific types of environments, tattoos and piercings, and certain jobs due to the chances of picking up infections. I have to be very conscientious of my surroundings and ensure that I avoid or limit the amount of exposure I have to certain people, animals, and diseases that may not affect the average person, but could severely threaten my life and health. An infection in me is not treatable by a simple oral antibiotic, but must be treated aggressively with IV antibiotics in order to help my body be able to better fight it off. Being a transplant recipient makes everything more complicated and dangerous.
In spite of living in a world which is filled with pre-cautions, uncertainties, and a daily focus on doing my part to stay well, I cannot live in a bubble. I refuse to live in a bubble. In spite of the fact that I recognize some of the things that I do to enjoy life could potentially be dangerous, I choose to do certain things anyway. I am not allowed to own a guinea pig due to the risk of developing rotavirus. However, I have had guinea pigs since the age of nine and my life would be incomplete without a little pal. I take risks when working around kids who may be carrying around an infectious disease that I could easily catch, but then my involvement with my church would not be in the positions in which I most enjoy and have been gifted to serve. It’s all a matter of weighing the positive and negatives, the pleasures against the risks, and the advantages with the disadvantages.
One of the hardest things for me to deal with is trying to acclimate myself into more of a normal world as my health has improved, while it is nowhere near to the point of being independent in what I do or free from a life of health complications and treatments. It is tough to deal with what is considered to be a “silent” or “invisible” illness. While I am glad that I often don’t look sick and my health problems are not overtly apparent to the public, it is also difficult to deal with the discrimination, lack of understanding, and blank stares of battling serious chronic illnesses while looking perfectly normal. Although undoubtedly I have many challenges, people often don’t understand the measure of impact it has on my world because I am able to walk, talk, breathe, drive, and generally have a positive approach to life and do normal things while rarely seeking assistance or accommodations unless absolutely necessary. On the surface, no one would even know the struggles I have within or the level of pain that I deal with every day. I make an effort to push myself in spite of being weak, tired, sore, or nauseous. In fact, sometimes I push myself to the point of knowing that I am physically no longer safe to continue what I am doing, but rather than seek help, I often work through my own solution, wait it out, or continue anyway. I recognize that these are not the best avenues to pursue in many cases, but it’s tough because I want people to see me as being normal and I want to do everything on my own.
I have discovered that although dealing with a chronic illness in my last few years as a pediatric patient and through college, that it is actually more difficult socially to manage it now. Upon meeting someone for the first time, the natural first question is: what do you do for a living? It’s an impossible question to avoid! Everyone works…right? It’s a great and normal conversation starter in most circumstances, yet in my case it stumps me almost every time. Immediately, any efforts I may have made to postpone or avoid being labeled as having a chronic illness are destroyed. While I am passionate about what I do and proud of the accomplishments I have made in life to this point, there is no way getting around explaining why I do it. And, to top it off, I don’t do it for a living. At the age of 22 and straight out of college, I was unable to work full-time and was approved for disability within two months of applying. But needing something to occupy my time and help others in the aftermath of months of depression due to the postponement of my dream, the pursuit of my graduate Art Therapy degree, I started what would become the world’s largest support group for gastroparesis. Within one year, I had used that to start the only non-profit in the world dedicated to fighting gastroparesis. Eventually, because the two conditions frequently come together, we expanded into chronic intestinal pseudo-obstruction.
Every time I am approached with that dreaded question regarding career, I try to respond in the most positive light possible, yet there is no way getting around the immediate identification of me as someone who is suffering from a chronic, very debilitating disease. My typical response is that I am founder and CEO of a non-profit organization which I run from my home for gastroparesis and chronic intestinal pseudo-obstruction, two conditions from which I suffered which led to a five organ transplant in March 2006. Although I try to leave it at that in the early stages of meeting others, naturally the term “five organ transplant” brings up even more questions and leads me into a very complicated, albeit ice-breaking, conversation. There’s just no quick or easy way to explain what leads up to a five organ transplant or any portion of my very long and complicated medical history! This question is then usually followed by the question of my living arrangements. It is difficult for me to explain that I am unable to be independent and live in an apartment in the basement of my parents’ home. It is often difficult to connect with others in my age group because their world is so different from mine. They are able to talk about their careers, often marriage and kids, rent or mortgages, co-workers, and other social events. These things are unfathomable to me! I can’t even begin to understand how a person can hold down a full-time job, come home to care for a family, attend and/or organize social functions, and keep up with regular household chores and shopping. I feel as if I have accomplished something in a day if I manage to spend a couple hours focusing hard on one project, or making a trip out to run a couple of errands.
Although I try to step into their world and understand what their lives are like, it’s impossible for me to relate so therefore I am often left speechless and unable to carry on a routine conversation. At the same time, they are unable to understand where I am coming from and that the world I live in is impossible to step out of. While a career, family, and common, everyday activities dominate their lives, my life is filled with things that few can understand. It can be a one-sided conversation. Since it is much more common to do the things that they do, I can connect to an extent with their stories, but when it comes to sharing my own experiences it’s just not the same. I often don’t know how to connect and it makes it difficult to get to know me for who I am, as an average person, just coming from a completely different perspective and a totally different life experience. It impacts everything and there is no way around it. I often feel left out of conversations because I am unable to talk about or understand things that are so commonplace for most people, yet they are also unable to relate to the things that are so commonplace for me. As much as I strive to maintain normal conversation and limit my health experiences, it is such a big part of my life and a huge part of who I have become, what I am passionate about, why I do the things I do and say the things I do, and why my lifestyle is as it is that I don’t know how to get around it. I certainly can’t go back and change those circumstances in order to achieve a better sense of normalcy, and there’s nothing I can do now to escape the realities of what I deal with on a daily basis and the limitations I still have. I often find myself desperately trying to dig up stories of times when some event in my life happened that was within the realms of normal...a college memory, an internship experience, or a G-PACT issue that puts me in the career path in a sense, but unfortunately most experiences are still tainted by the 15 years that my life have been so wrapped in the medical world. I can’t separate them. No matter how hard I try, I can’t. It’s all part of me and who I have become. Yet, for some reason, many people tend to think that I should be able to separate the two. It’s only natural for my jokes, comments, and conversations to somehow involve that aspect of my life because it has such a profound influence on everything that I do.
Not too many people my age understand the feeling of losing very close friends, most of whom have shared the same experiences as I have. It’s a scary feeling to watch as some of my closest friends who fought so hard with me continue to struggle, and in many cases, lose the battle. Over the past year, I have dealt with the loss of several very close friends due to transplant related complications. I have attended memorial services for other friends in years previous as well. Although I am personally doing well in comparison, no one but those who have been through the transplant process can understand the fears that I have and how I must manage those fears and frustrations on a daily basis. Although I am very optimistic and see my future as bright and fulfilling, I can’t help but deal with strong emotions when any situation goes awry in my life or that of my transplanted friends. I don’t dwell on these things by any means. I make every attempt to avoid looking to the past as much as possible, but I certainly can’t separate them from my life.
Having a transplant changed things for me. I see this life as separate and completely different from my previous one, yet they are still connected. I have different issues I must battle and the entire transplant process has brought me to a greater understanding of myself, God, love, my family, friends, overall suffering, and the incredible need to fight regardless of the odds and discomfort involved. However, pre-transplant complications led to the need for a transplant and it’s all part of the big picture. I often feel as if I am ten years behind my peers in many ways because I am unable to talk about regular life issues beyond my college experiences. Sometimes I feel as if this makes me immature, but then I recognize that I am far from it. I may not be able to relate on levels that society places in front of me as a way of measuring maturity…the expectations of supporting myself financially, being totally independent, and caring for a family, my maturity is far higher in other levels of life and understanding and certainly my lack of independence is not related to anything in which I have any control.
I know how to handle complex challenges and decisions that others my age have never even considered. I’ve had to write an advance directive, a clear indication that I recognize my mortality at any time. I’ve had to push through pain, near fatal infections, cardiac arrests, surgeries, the inability to eat, living without a small bowel for a year, and the fight back from a 16 ½ hour five organ transplant and its complications just to achieve the measure of health that I have today. I have had to learn how to manage all the emotions, frustrations, and fears that come with the whole process and dealing with much of it without the full understanding of those around me. My battle with that continues as I do suffer the effects of some PTSD as a result of some of the medication problems I experienced post-transplant that left me unable to sleep, speak at times, think, remember, control, or care for myself. I was terrified. What added to the trauma of this was the inability to express myself during that time and describe what I was experiencing to those who were trying to care for me. In spite of that, I have been able to overcome most of those memories and advance my life forward in an effort to focus on the future. While I am still haunted by those experiences, I have figured out how to cope when the emotions and fears hit and now I am able to lessen the impact they play in my life. These experiences have given me wisdom beyond my age as I am able to understand the challenges that come with managing not only physical problems, but the associated emotional, psychological, and spiritual challenges that so many people with chronic or life-threatening illnesses face. This has greatly enhanced my ability to work with the population in which I do.
Although effective as a leader and role-model in G-PACT before the transplant, my effectiveness has been greatly enhanced by my experiences and my drive to fight for others has become even stronger. I don’t get paid for what I do in monetary terms, but I am paid every day that I am able to make an impact on the life of those who are struggling and in need of knowing there are people out there who truly care and are fighting for them. My value as a human is not based on how much I earn, but how much of a difference I make in the lives of those around me.
Battling what I have and dealing with a future of unknowns never gets easier. It never will. I recognize that many of the medications I take and treatments I go through have consequences years down the road as well. It’s difficult at times to know that what is keeping me alive at this point may eventually lead to further complications. But I don’t let that rule my thinking or way of life. I can’t. Somewhere there is a family whose child died during an unexpected, catastrophic event and made the decision to give life to someone else during a time of mourning. I can’t let that family down. I have always felt it is my obligation to do what it takes to make that family proud to have given this gift and to see how their child has made an impact on the world.
The things that make my life so difficult are also the things that make me so passionate about life. Often, people do not understand why the littlest things are so exciting to me…an hour in the Jeep with the top off, spending a couple of hours with a friend, volunteer work doing anything for even an hour or two, and the need to cheer people up through any means I can think of, even if as simple as sending an online greeting card or a superpoke through Facebook! I enjoy meeting people whether online or in person and just getting to know them. It means the world to me to go out with anyone at all to eat or just hang out and chat. The ability to travel and represent G-PACT is exciting because I was unable to do that for years. I love being able to represent thousands of people who are unable to represent themselves. I enjoy things in life that many people dread or try to avoid. Even things I don’t enjoy I often find that I don’t mind doing because I have the capacity to do them…I am alive to do them. There are so many things I want to learn now that I never had an interest in before. I want to travel to so many places! I love life and am grateful for every day that I wake up!
Although it is trying to know that in spite of my efforts to the contrary, I will never be seen as “normal”, I recognize that I have been chosen for a reason to take on this task. My love and passion for God has grown and because I am unable to completely step out of my world and reality, it has given me many opportunities to share how the Great Physician has intervened in my life and given me more chances in life to serve Him. My story has encouraged others who continue to fight that there is hope as they have watched me come from the brink of death, unable to get out of bed, and not expected to live through the transplant, to someone who has recovered and found a way to fight back in a way that helps not only me in my attempts at coping and recovery, but all of them as well.
I recognize that not only do I owe it to my donor family to utilize every opportunity I am given and seek out others that become available, but I also owe it to my God who has clearly kept me in this world for a time because of some great purpose He has. Although His purpose is not always clear and my world is certainly filled with questions, frustration, and an ongoing struggle with inner thoughts, feelings, and fears, I know there is a purpose and it’s not in the future. It is something I am working towards fulfilling every day. So while I continue on in this constant battle of ups and downs, facing the unknown, and maneuvering within the unique and misunderstood world in which I live, I try to maintain perspective and recognize that I am not to be defined by what society deems as normal, but that God has given me a special environment in which to live and operate and a particular focus and gift in life that only those with my circumstances are given. When feeling frustrated by the inability to live up to society’s “norms” and not feeling fully connected with the typical world, I force myself to focus on how the world that I live in would be different if God had not given me the opportunity and abilities to work within it and make an impact in any way possible.
Living with DTP: Awareness Week blog from August
Gastroparesis and Chronic Intestinal Pseudo-Obstructoon are two conditions which paralyze the GI tract. Digestive Tract Paralysis (DTP) affects approximately 5 million Americans, yet you have probably never heard of it unless you or a loved one has been diagnosed with it. More information is available on the G-PACT website at www.g-pact.org and on their facebook fan page at www.facebook.com/G-PACT.
I was diagnosed with gastroparesis in 1994 and intestinal pseudo-obstruction in 2002.
I would like for people to know that living with DTP is like: Remember the last time you had the stomach flu? It's like that, only 24/7/365 and added with a lot of pain too. It never goes away. Remember how weak you were after the flu? You had a chance to recover after a few days and get your strength back. I don't have those days...ever...so I just get weaker and weaker and weaker and continue to have nausea, vomiting, pain, malnutrition, dehydration, bloating, early satiety, and weight loss.
DTP has changed my life by: It has changed me in good and bad ways. It has disrupted so much of my life by not allowing me to eat and live "normally", have a job, have a normal social life, get my graduate degree, and often leaves me in bed unable to get up. I have spent so much of the last 17 years in the hospital and have developed so many complications as a result. It forced me to have a five organ transplant and has almost taken my life on so many occasions. However, it has also given me new meaning and purpose in life. I have been able to help a lot of people through it by founding G-PACT and it's been exciting to see how far we can go when a group of people come together for one cause. I love that I have been able to give back to this community of people and I wouldn't have had that opportunity if I never developed it myself. It has helped me appreciate life so much more and given me compassion that I never had before I got sick. It has drawn me closer to God and I have to rely on Him so much to help me deal with all the ups and downs I deal with on a daily basis. It's both the worst and the best thing that could have happened to me. While I long every single day to be free of my problems, I don't discount what these problems have done to make me who I am. I often wonder what I'd be doing if I never got sick. I have no idea, but in some ways it scares me to think about it. I think I'm a better person overall as a result of it.
The hardest thing about living with DTP is: The limited social life, the lack of understanding, the constant ups and downs, the unknowns, and the unpredictability of it. I don't know from one minute to the next how I am going to feel. It makes it hard to plan anything at all. I can feel ok, then suddenly feel rotten and not be able to do anything at all.
Also, dealing with chronic nausea, malnutrition, and pain is not easy, but worse than that is when people don't understand and make assumptions without being in my situation. I'd rather deal with the physical pain than the emotional pain brought on by others who don't understand.
I wish people would understand that: GP and CIP are real conditions without a cure. They are NOT mild and NOT controllable by diet alone most of the time. In fact, one of the top GP docs in the country has said that he has given up on diet for GP...there isn't one. What I eat one day may go down ok and make me really, really sick the next. Also, GP and CIP are considered "invisible illnesses." That means that I may be really, really sick but still look really good. I may also look really, really sick, but acually feel pretty good. I also hide a lot...I'm not always really honest about how I feel because I don't like to sound like I'm complaining if it's a bad day. You may have to pressure me a bit and ask more direct questions to get a response, but I am open and really don't mind talking about it. In fact, sometimes I really need to, but don't know who REALLY wants to hear about it.
Sometimes I feel like: I am not as important in the world as other people because I am sick so much and not predictable and not always reliable. Sometimes I feel like I am a burden on society because I don't work and have to get all my money from disability and Medicare and Medicaid have had to pay so much, even $1,000,000 just for my transplant, and I'm not able to contribute anything back. I also feel like I am a burden on my family and like they have had to give up too much because I am sick. Sometimes this keeps me from being as open with them as I should be because I am trying to "protect" them.
I also feel bad when my meds interfere with my emotions and I become someone I am not in reality. Sometimes changes in my steroids, prograf, and other meds make me get really angry, depressed, and turn me into someone nasty that I'm not and I get really sensitive about everything and take things too personally. I tend to say and do things I don't mean and I always look back and feel bad later. I want people to understand that it's not me talking sometimes, it really is the drugs, and to be patient with me and know I will eventually stabilize and be back to my usual happy, quirky, and funny self with a love for life.
Everyday I deal with: nausea, pain all over, stiff, painful joints, bones, and muscles dizziness, weakness, severe, debilitating fatigue, fear, PTSD as a result of post-transplant complications (well, not daily, but sometimes), and emotional ups and downs
The treatment options I have tried are: feeding tubes, IV nutrition, meds (reacted to all of them but phenergan), temporary gastric pacer in 1996 (way early studies), botox injections into pyloric sphincter, and finally five organ transplant (small bowel, stomach, pancreas, liver, duodenum)
Other conditions I have been diagnosed with include: neuropathy, osteoporosis, long QT, dumping syndrome, Factor V leiden, migraines, heart murmur, mitral valve prolapse, fibromyalgia, possible POTS, probable Raynauds or another auto-immune condition, probable arthritis, (larygopharygeal reflux disease....swallowing disorder), some kidney problem that makes me lose potassium, and I don't remember what else...I've lost track, plus they keep throwing things out at me...
DTP has affected my social life by: keeping me from eating. Everyone eats when they get together. It's hard to go out to dinner and sit there. Also, I am so tired that I can't keep up with my friends or stay out for long periods of time or do very active things. I get home exhausted and can't do anything again for a few days. Planning things always comes with an "it depends how I feel that day" attached to it. I can't ever make solid plans.
The foods I can eat are: nothing, really....they all make me sick now and I have NO appetite, but when I do get the munchies I get by best on animal crackers, sugar free jell-o, pretzels, some soups, fat free cottage cheese, some pasta, SF pudding, SF candy, and string cheese. I'm a grazer and "pick" all day.
The foods I miss the most are: lasagna, pizza, tacos, cheeseburgers, french fries, steaks, cheese quesadilla's, nachos, cheese anything...
The activities I used to do and can't anymore are: basketball, soccer, softball, even drawing and painting is hard for me now, reading is hard sometimes because of concentration levels, track, hobby driving
The activity I miss the most is: physically: basketball, mentally (and physically too...takes energy) my artwork/illustrating and landscape painting
Even though life with DTP is tough, I have accomplished or learned that: I am stronger than I ever thought I could be! I have still made a decent life for myself and done a lot in spite of being so sick!
When I get down I: pray, look for something to do outside the house if I am up for it...anything! If I'm not up for going out, I contact a friend via text, phone, or FB, bug/tease people on FB, write out my feelings A LOT, or play a video game, watch a movie, or try to take a nap because sometimes fatigue in itself is the cause of me being down. Sometimes I work on G-PACT, but sometimes G-PACT is WHY I get down!
When I am having a bad day I: sleep it off and just watch TV. Sometimes I vent it all on FB (sorry...). I may text people and vent too (again...sorry...)
The gadget, item, "toy" I couldn't live without is: any of my techy stuff, but especially my iPhone. Next would be my computer and my Jeep :)
If my health were normal for one day I would: eat everything I have been craving for 17 years, then go out and play a hard game of no rules basketball...which can look more like football when I really get into it...:) Oh, and white water rafting...I'd definitely go white water rafting. Maybe I'll eat AFTER white water rafting!!! :)
A quote (motto, scripture, inspiration) that gets me through the tough days is: "I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing." - Agatha Christie
When I am having a good day I: go out and do what I can;t on the bad days. I LOVE to volunteer at my church and drive the Jeep for kicks (but it's an expensive hobby...:(
People would be surprised to know that: I was TN state spelling champion in 7th grade :) I won on the word "cacography" which ironically means "the possession of poor spelling skills"
Something interesting about me is: I think the best TV shows are from the 50's-80's. I also share a birthday with ALF. :) October 28 (28th of Nathinganger on Melmacian calendar)
One comment that people make to me that is really tough is: "I wish I could have what you have so I could lose some weight!!!!"
But I love it when people say: "How are you?" and really want to know...
My favorite thing that people do for me when I am not feeling well is: leave me alone if I'm in bed, or send me a random text to check up on me. If I'm not home, just hang with me until I feel better and can get home to my bed safely. If in the hospital, I like it when people visit me :)
The biggest surprise I have had about what dealing a chronic illness is like is: the discrimination...wow...and the assumptions/accusations made by people not in my shoes about what it should be like and how I should deal with it!!!!
I was involved in Digestive Tract Paralysis Week because: Awareness is so crucial to getting a cure...plus, I'm kinda the G-PACT president and started the whole crazy week! :)
I wish more people would read this and help increase awareness because: we need to be understood...and we need a cure!
The fact that you took time out of your busy schedule to read this makes me feel: appreciated, loved, and like you really do care and want to know how you can be the best support for me through it all
I'd also like to say: I love all my friends and family. Sometimes I am blunt and very honest about some of the nastiness of this and my frustrations, but I just need for people to know things sometimes. Plus, getting it out helps me cope. I don't feel sorry for myself, I don't want anything out of it, and I'd give anything to be "normal," but sometimes I have to express myself openly and honestly and it may sound like I'm complaining or pitying myself. I'm really not. I just get frustrated. This does NOT rule my life!
I was diagnosed with gastroparesis in 1994 and intestinal pseudo-obstruction in 2002.
I would like for people to know that living with DTP is like: Remember the last time you had the stomach flu? It's like that, only 24/7/365 and added with a lot of pain too. It never goes away. Remember how weak you were after the flu? You had a chance to recover after a few days and get your strength back. I don't have those days...ever...so I just get weaker and weaker and weaker and continue to have nausea, vomiting, pain, malnutrition, dehydration, bloating, early satiety, and weight loss.
DTP has changed my life by: It has changed me in good and bad ways. It has disrupted so much of my life by not allowing me to eat and live "normally", have a job, have a normal social life, get my graduate degree, and often leaves me in bed unable to get up. I have spent so much of the last 17 years in the hospital and have developed so many complications as a result. It forced me to have a five organ transplant and has almost taken my life on so many occasions. However, it has also given me new meaning and purpose in life. I have been able to help a lot of people through it by founding G-PACT and it's been exciting to see how far we can go when a group of people come together for one cause. I love that I have been able to give back to this community of people and I wouldn't have had that opportunity if I never developed it myself. It has helped me appreciate life so much more and given me compassion that I never had before I got sick. It has drawn me closer to God and I have to rely on Him so much to help me deal with all the ups and downs I deal with on a daily basis. It's both the worst and the best thing that could have happened to me. While I long every single day to be free of my problems, I don't discount what these problems have done to make me who I am. I often wonder what I'd be doing if I never got sick. I have no idea, but in some ways it scares me to think about it. I think I'm a better person overall as a result of it.
The hardest thing about living with DTP is: The limited social life, the lack of understanding, the constant ups and downs, the unknowns, and the unpredictability of it. I don't know from one minute to the next how I am going to feel. It makes it hard to plan anything at all. I can feel ok, then suddenly feel rotten and not be able to do anything at all.
Also, dealing with chronic nausea, malnutrition, and pain is not easy, but worse than that is when people don't understand and make assumptions without being in my situation. I'd rather deal with the physical pain than the emotional pain brought on by others who don't understand.
I wish people would understand that: GP and CIP are real conditions without a cure. They are NOT mild and NOT controllable by diet alone most of the time. In fact, one of the top GP docs in the country has said that he has given up on diet for GP...there isn't one. What I eat one day may go down ok and make me really, really sick the next. Also, GP and CIP are considered "invisible illnesses." That means that I may be really, really sick but still look really good. I may also look really, really sick, but acually feel pretty good. I also hide a lot...I'm not always really honest about how I feel because I don't like to sound like I'm complaining if it's a bad day. You may have to pressure me a bit and ask more direct questions to get a response, but I am open and really don't mind talking about it. In fact, sometimes I really need to, but don't know who REALLY wants to hear about it.
Sometimes I feel like: I am not as important in the world as other people because I am sick so much and not predictable and not always reliable. Sometimes I feel like I am a burden on society because I don't work and have to get all my money from disability and Medicare and Medicaid have had to pay so much, even $1,000,000 just for my transplant, and I'm not able to contribute anything back. I also feel like I am a burden on my family and like they have had to give up too much because I am sick. Sometimes this keeps me from being as open with them as I should be because I am trying to "protect" them.
I also feel bad when my meds interfere with my emotions and I become someone I am not in reality. Sometimes changes in my steroids, prograf, and other meds make me get really angry, depressed, and turn me into someone nasty that I'm not and I get really sensitive about everything and take things too personally. I tend to say and do things I don't mean and I always look back and feel bad later. I want people to understand that it's not me talking sometimes, it really is the drugs, and to be patient with me and know I will eventually stabilize and be back to my usual happy, quirky, and funny self with a love for life.
Everyday I deal with: nausea, pain all over, stiff, painful joints, bones, and muscles dizziness, weakness, severe, debilitating fatigue, fear, PTSD as a result of post-transplant complications (well, not daily, but sometimes), and emotional ups and downs
The treatment options I have tried are: feeding tubes, IV nutrition, meds (reacted to all of them but phenergan), temporary gastric pacer in 1996 (way early studies), botox injections into pyloric sphincter, and finally five organ transplant (small bowel, stomach, pancreas, liver, duodenum)
Other conditions I have been diagnosed with include: neuropathy, osteoporosis, long QT, dumping syndrome, Factor V leiden, migraines, heart murmur, mitral valve prolapse, fibromyalgia, possible POTS, probable Raynauds or another auto-immune condition, probable arthritis, (larygopharygeal reflux disease....swallowing disorder), some kidney problem that makes me lose potassium, and I don't remember what else...I've lost track, plus they keep throwing things out at me...
DTP has affected my social life by: keeping me from eating. Everyone eats when they get together. It's hard to go out to dinner and sit there. Also, I am so tired that I can't keep up with my friends or stay out for long periods of time or do very active things. I get home exhausted and can't do anything again for a few days. Planning things always comes with an "it depends how I feel that day" attached to it. I can't ever make solid plans.
The foods I can eat are: nothing, really....they all make me sick now and I have NO appetite, but when I do get the munchies I get by best on animal crackers, sugar free jell-o, pretzels, some soups, fat free cottage cheese, some pasta, SF pudding, SF candy, and string cheese. I'm a grazer and "pick" all day.
The foods I miss the most are: lasagna, pizza, tacos, cheeseburgers, french fries, steaks, cheese quesadilla's, nachos, cheese anything...
The activities I used to do and can't anymore are: basketball, soccer, softball, even drawing and painting is hard for me now, reading is hard sometimes because of concentration levels, track, hobby driving
The activity I miss the most is: physically: basketball, mentally (and physically too...takes energy) my artwork/illustrating and landscape painting
Even though life with DTP is tough, I have accomplished or learned that: I am stronger than I ever thought I could be! I have still made a decent life for myself and done a lot in spite of being so sick!
When I get down I: pray, look for something to do outside the house if I am up for it...anything! If I'm not up for going out, I contact a friend via text, phone, or FB, bug/tease people on FB, write out my feelings A LOT, or play a video game, watch a movie, or try to take a nap because sometimes fatigue in itself is the cause of me being down. Sometimes I work on G-PACT, but sometimes G-PACT is WHY I get down!
When I am having a bad day I: sleep it off and just watch TV. Sometimes I vent it all on FB (sorry...). I may text people and vent too (again...sorry...)
The gadget, item, "toy" I couldn't live without is: any of my techy stuff, but especially my iPhone. Next would be my computer and my Jeep :)
If my health were normal for one day I would: eat everything I have been craving for 17 years, then go out and play a hard game of no rules basketball...which can look more like football when I really get into it...:) Oh, and white water rafting...I'd definitely go white water rafting. Maybe I'll eat AFTER white water rafting!!! :)
A quote (motto, scripture, inspiration) that gets me through the tough days is: "I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing." - Agatha Christie
When I am having a good day I: go out and do what I can;t on the bad days. I LOVE to volunteer at my church and drive the Jeep for kicks (but it's an expensive hobby...:(
People would be surprised to know that: I was TN state spelling champion in 7th grade :) I won on the word "cacography" which ironically means "the possession of poor spelling skills"
Something interesting about me is: I think the best TV shows are from the 50's-80's. I also share a birthday with ALF. :) October 28 (28th of Nathinganger on Melmacian calendar)
One comment that people make to me that is really tough is: "I wish I could have what you have so I could lose some weight!!!!"
But I love it when people say: "How are you?" and really want to know...
My favorite thing that people do for me when I am not feeling well is: leave me alone if I'm in bed, or send me a random text to check up on me. If I'm not home, just hang with me until I feel better and can get home to my bed safely. If in the hospital, I like it when people visit me :)
The biggest surprise I have had about what dealing a chronic illness is like is: the discrimination...wow...and the assumptions/accusations made by people not in my shoes about what it should be like and how I should deal with it!!!!
I was involved in Digestive Tract Paralysis Week because: Awareness is so crucial to getting a cure...plus, I'm kinda the G-PACT president and started the whole crazy week! :)
I wish more people would read this and help increase awareness because: we need to be understood...and we need a cure!
The fact that you took time out of your busy schedule to read this makes me feel: appreciated, loved, and like you really do care and want to know how you can be the best support for me through it all
I'd also like to say: I love all my friends and family. Sometimes I am blunt and very honest about some of the nastiness of this and my frustrations, but I just need for people to know things sometimes. Plus, getting it out helps me cope. I don't feel sorry for myself, I don't want anything out of it, and I'd give anything to be "normal," but sometimes I have to express myself openly and honestly and it may sound like I'm complaining or pitying myself. I'm really not. I just get frustrated. This does NOT rule my life!
When God says "no," He has a better plan
I had a five organ transplant in 2006- small bowel, pancreas, liver, duodenum, and stomach due to conditions that paralyze the GI tract- gastroparesis and chronic intestinal pseudo-obstruction. When I arrived at the transplant center for initial evaluation, I was 68 pounds and starving to death. The doctors at the University of Pittsburgh said I was so late in arriving and should have been done a long time ago. They weren't sure I would survive long enough for the transplant. Typically, the wait for these transplants is about 3-6 months. I was too sick a lot of times when they got a call for organs for me that my surgeon couldn't do it. I also got three or four false alarms where I was called, told they had organs, went in to the hospital for all the pre-op prep, and then last minute was told there was something that didn't quite match and sent back home. That was always devastating because I had my hopes built up, and then they were dashed as I continued to get sicker and sicker and my time was running out.
In the initial transplant testing, my liver didn't look perfect, but they thought that it would reverse itself once I had the new organs. The surgeon told me if the organs came with a liver, he would do it, if not, we weren't going to wait for that. At about the one year wait mark, I got a call and was told the organs were an absolute perfect match. They hadn't seen a better match before. I was within minutes of being wheeled into the OR when the surgeons came down and said that the organs did not come with a liver, and the way my anatomy was they would not be able to hook up the new small bowel to my original liver. I was devastated because I had already waited a year, most of my friends had been transplanted, I was 62 pounds by then, and I was running out of time. I cried and shut myself in the room we were staying in all weekend. I was depressed and angry. I thought the organs would never come in time and I would not receive my gift of life.
It was another three-four months before I got my next call. I was in the hospital at the time with perhaps a week left of life. Mentally, I had already "checked out" because of the extreme malnutrition and poor state of health. I don't rememeber the last few weeks pre-transplant. The docs came up and told me that these organs were even better than the others and an absolute perfect match. I was prepped all night for the surgery and taken down to the OR. This one was a go! When I woke up in the TICU (transplant ICU) a couple days later, I was informed that I had received all five organs, including the liver.
What is amazing and a God given gift, is that the docs said that although my testing showed my liver wasn't in horrendous shape and they expected it to reverse and heal after the transplant, once they got in there and actually SAW my liver, it was twice it's normal size and full of fatty deposits. They told me if the organs had not come with a liver and they hadn't transplanted it, that I would soon have been placed on a waiting list for a liver. I would have had to go through a separate transplant for a liver. This would have increased my risk of rejection of all organs because it's much better for all five organs to come from one donor. Plus, my liver may have failed before I could get another one.
I look back to that and realize God had said "no" to the organs that looked so promising a few months before because He knew I needed a liver too. It was worth the extra 3-4 month wait because it spared me from so many other complications and I am so much healthier as a result of getting all organs from one donor!
One of my favorite quotes is "When god shuts a door, he opens a window." God taught me a lot through that experience. While several calls were no go's and I was in fear for my life, He had me right where He wanted me and was in total control of my situation. In spite of my anger over the long wait, He continued to show me His love and did not give up on me even though I had given up on Him.
In the initial transplant testing, my liver didn't look perfect, but they thought that it would reverse itself once I had the new organs. The surgeon told me if the organs came with a liver, he would do it, if not, we weren't going to wait for that. At about the one year wait mark, I got a call and was told the organs were an absolute perfect match. They hadn't seen a better match before. I was within minutes of being wheeled into the OR when the surgeons came down and said that the organs did not come with a liver, and the way my anatomy was they would not be able to hook up the new small bowel to my original liver. I was devastated because I had already waited a year, most of my friends had been transplanted, I was 62 pounds by then, and I was running out of time. I cried and shut myself in the room we were staying in all weekend. I was depressed and angry. I thought the organs would never come in time and I would not receive my gift of life.
It was another three-four months before I got my next call. I was in the hospital at the time with perhaps a week left of life. Mentally, I had already "checked out" because of the extreme malnutrition and poor state of health. I don't rememeber the last few weeks pre-transplant. The docs came up and told me that these organs were even better than the others and an absolute perfect match. I was prepped all night for the surgery and taken down to the OR. This one was a go! When I woke up in the TICU (transplant ICU) a couple days later, I was informed that I had received all five organs, including the liver.
What is amazing and a God given gift, is that the docs said that although my testing showed my liver wasn't in horrendous shape and they expected it to reverse and heal after the transplant, once they got in there and actually SAW my liver, it was twice it's normal size and full of fatty deposits. They told me if the organs had not come with a liver and they hadn't transplanted it, that I would soon have been placed on a waiting list for a liver. I would have had to go through a separate transplant for a liver. This would have increased my risk of rejection of all organs because it's much better for all five organs to come from one donor. Plus, my liver may have failed before I could get another one.
I look back to that and realize God had said "no" to the organs that looked so promising a few months before because He knew I needed a liver too. It was worth the extra 3-4 month wait because it spared me from so many other complications and I am so much healthier as a result of getting all organs from one donor!
One of my favorite quotes is "When god shuts a door, he opens a window." God taught me a lot through that experience. While several calls were no go's and I was in fear for my life, He had me right where He wanted me and was in total control of my situation. In spite of my anger over the long wait, He continued to show me His love and did not give up on me even though I had given up on Him.
Subscribe to:
Posts (Atom)