"Being strong doesn't mean that you are never weak. Hanging in there doesn't mean that you never let go. Being tough doesn't mean that you are never tender and don't cry. Fighting for your life doesn't mean that you never drop the sword and let down your guard. You still take hits. You still hurt. You still have moments when you just can't handle the battle.
Strength comes from the ability to pick up and move on when you've been knocked down. It means that you are willing to ask for reinforcements when you can't handle things alone. Strength is apparent when you are still willing to cry out for mercy when circumstances seem overwhelming.
Admitting that you need help does not mean that you are weak. It just means that you are struggling to hang in there alone and even though the rope burns start hurting, you refuse to let go completely. It means that you just need someone to help you pick up your sword, stand by your side, and fight along with you. Strength simply means that you will do whatever it takes to get through any challenge and that when you fall from being weary in the fight, you figure out what you need to do to get back up and continue."
-Carissaism, 2011
Tuesday, December 27, 2011
Monday, December 12, 2011
What IS Quality of Life, really?
When I first started going to Pittsburgh, I had to fill out a QOL (Quality of Life) survey. Today in the mail I got a five year post-transplant QOL survey. I think they try to test your sanity because the thing is like 15 pages long and they ask the same questions over and over, just in different ways. Seriously. I had to fill it out at my one year mark too.
Kareem starts the letter with "After our friendship for many years" and then goes on to say to answer the survey honestly about my QOL now in comparison to pre-transplant with no bias or intention to please him. He wants to know how to tell other patients what QOL is like several years after transplantation and to "help the medical community to better take care of precious patients like you." He ends it with "I love you and happy holidays." I know it is pretty much a form letter, although he personally signed it, but I also know he means what he says. The transplant doctors in Pittsburgh are like family for us...the whole team is from the nursing staff and coordinators, to the surgeons and other doctors involved in the overall care.
Anyway, I so wish I could answer the survey based on my QOL three years ago and not now. Now my QOL is comparable to that of pre-tx in physical terms. I have some days that are better, some days that are the same, and unfortunately, some days that are even worse than pre-transplant. The difference is now I have a greater appreciation for life and passion to fight. Pre-transplant I stayed in bed and only left to go to the doctor or the hospital. I had no social life to speak of and didn't care to have one. I didn't go to church or run my own errands. I wasn't driving at all. I had lost my passion for G-PACT and had little concern over whether our mission continued or not. My desire to have the transplant was more out of a fear of dying and an awareness that I had so little time and no options left. It was not as much about a desire to actually "live," be productive, and give back to the world.
Transplant really changed my perspective on the value and importance of life and made me appreciate things in a whole new way. It gave me great insight and a better understanding into things that few people get to experience unless in the same situation. It's a pretty incredible feeling to know that you have a second chance to change your life and to recognize what you want to do differently with the new life you have been given. It reminds me of one of my favorite, and obviously well- known, movies "It's a Wonderful Life." Although not given the opportunity to see what life would be like if I had never been born, the transplant did give me a new perspective into what I needed to change with my new life and provided me with the opportunity to do it. Not too many people face death and then have a chance to start over and make changes in life that they recognize during the dying process. I had "checked out" weeks before I received my transplant. I remember very little about those final weeks, but I believe that I had less than a week left in life by the time I received my organs.
My QOL is much better in terms of my desire to live, my drive to not let this ruin my life but "live" in spite of it, and my overall approach to my future. Now I still drive, work to be independent, run my own errands, attend church every Sunday I am not in the hospital, volunteer during the week, and have a passion for my work with G-PACT. In spite of how difficult it has been physically over the last three years, I would not trade my decision to have the transplant done because it has given me 5 1/2 years I never would have had. That has resulted in the development of some of the greatest friendships ever, awesome opportunities I never would have had, incredible spiritual growth, change in perspective of my life mission, and a chance to see G-PACT grow and make progress. I have a different love for all people from all backgrounds, and have matured and grown in so many ways that it's been worth the extra time. I absolutely love life and living.
It pains me that I can't honestly answer questions of my physical QOL being any better. In so many ways I physically struggle a lot more now than I did then. I have a lot more chronic pain and more difficulty walking and moving around. My muscles, while always weak, have become even more stiff, sore, and weak. I fall a lot more. My nausea never goes away and has reached even more of a debilitating level most of the time. My conditions have become even more complicated as they are opposite now and work against each other. I have developed more problems since, either as a result of the transplant or the underlying condition progressing. I am more limited in my treatment options due to my immune suppression, transplant medications, and need to protect the fragility of my transplanted organs and my body in general. This is still a new transplant with limited long-term statistics, so average lifespan of the new graft is still being evaluated. I spend many days in bed so weak and sometimes I am even unable to even roll over from one side to the other. I have to be more aware of any changes to my body and know that any change could mean rejection of the organs or a serious disease process beginning that my weakened immune system may not be able to fight off.
Mentally I am healthier and in that sense my QOL is much improved. Physically, three years ago I could have said that my health was also much better, but now...no. I so want to encourage Kareem and the transplant team. I would never go anywhere else or recommend any other center for this transplant. I want them to have incredible results with everyone and great responses to each survey after all the time and work they put into the life of every single patient...the long days of transplant (can be 16-24 hours depending, Kareem even has a cot in the OR), the long hours in clinic, middle of the night phone calls for emergencies awakening them from sleep at home and bringing them in, the long meetings and time poured into preparation, evaluation, pre-transplant care, post-transplant care, and lifelong follow up. Kareem has an uncanny ability to be able to identify that something is wrong and exactly what it is by a simple glance at a patient, an ability that is inborn and not learned. He gives his patients his personal cell phone number to call "anytime you need me." I want his program to show ultimate success. He and the Pittsburgh team invented it, after all, and do by far the most in people who travel from all over the world. Their success rate is the highest by at least 10 percentage points over any other center.
Of course, "survival" is one thing and "quality of life" is another. Am I success if I am alive with a poor QOL? I had a fabulous three years post-transplant with minimal complications, lots of good food, and few hospitalizations. I was able to rebuild a significant portion of my life during that time and started to do things that I can't even imagine stopping now, in spite of how my health has deteriorated. I could never imagine my life again without church, volunteer work, G-PACT, my friends, my Life Group, my social life, driving, or the many things I started to do to live normally again during my three much healthier years. In that sense, yes, I am definitely a success and my QOL is far, far better than it was 5 1/2 years ago in spite of increased and long hospital stays, tube feedings, IV fluids, and the many, many symptoms and complications I battle on a daily basis. Improvement in my QOL in those areas will take me so far in my ability to overcome the current and future physical challenges because I have more I want to live for. There are so many things I will not drop because during my three healthier years these activities and changes became part of me and things I can't imagine my life without.
So, although I will answer this QOL survey and know that physically my responses will not look good on the long term outcome of this transplant in me personally, at least at this stage in the process, my responses to any questions relating to the psychological, spiritual, mental, and social health QOL will put Kareem and the dream team at the top of the charts. While I wish I could rank higher on the physical side, I am glad that I can rank them high in terms of my recovery in the other very important aspects of my life. Aspects that are simply the result of recognizing how precious this life is, how "precious of a patient" I am, an how important it is to fight with everything I have got to NOT let this take me down or take me back to where I was pre-transplant. As long as I have a good QOL in all other aspects, I can manage the physical battle and decreased physical QOL much better than I could 5 1/2 years ago when I had a poor QOL overall.
Quality of life is much more than just physical well being and physical health. It also has everything to do with me as a whole person and my ability to live, dream, love, think, imagine, and still be able to enjoy life in spite of the very, very difficult physical issues I am forced to manage every single day.
Kareem starts the letter with "After our friendship for many years" and then goes on to say to answer the survey honestly about my QOL now in comparison to pre-transplant with no bias or intention to please him. He wants to know how to tell other patients what QOL is like several years after transplantation and to "help the medical community to better take care of precious patients like you." He ends it with "I love you and happy holidays." I know it is pretty much a form letter, although he personally signed it, but I also know he means what he says. The transplant doctors in Pittsburgh are like family for us...the whole team is from the nursing staff and coordinators, to the surgeons and other doctors involved in the overall care.
Anyway, I so wish I could answer the survey based on my QOL three years ago and not now. Now my QOL is comparable to that of pre-tx in physical terms. I have some days that are better, some days that are the same, and unfortunately, some days that are even worse than pre-transplant. The difference is now I have a greater appreciation for life and passion to fight. Pre-transplant I stayed in bed and only left to go to the doctor or the hospital. I had no social life to speak of and didn't care to have one. I didn't go to church or run my own errands. I wasn't driving at all. I had lost my passion for G-PACT and had little concern over whether our mission continued or not. My desire to have the transplant was more out of a fear of dying and an awareness that I had so little time and no options left. It was not as much about a desire to actually "live," be productive, and give back to the world.
Transplant really changed my perspective on the value and importance of life and made me appreciate things in a whole new way. It gave me great insight and a better understanding into things that few people get to experience unless in the same situation. It's a pretty incredible feeling to know that you have a second chance to change your life and to recognize what you want to do differently with the new life you have been given. It reminds me of one of my favorite, and obviously well- known, movies "It's a Wonderful Life." Although not given the opportunity to see what life would be like if I had never been born, the transplant did give me a new perspective into what I needed to change with my new life and provided me with the opportunity to do it. Not too many people face death and then have a chance to start over and make changes in life that they recognize during the dying process. I had "checked out" weeks before I received my transplant. I remember very little about those final weeks, but I believe that I had less than a week left in life by the time I received my organs.
My QOL is much better in terms of my desire to live, my drive to not let this ruin my life but "live" in spite of it, and my overall approach to my future. Now I still drive, work to be independent, run my own errands, attend church every Sunday I am not in the hospital, volunteer during the week, and have a passion for my work with G-PACT. In spite of how difficult it has been physically over the last three years, I would not trade my decision to have the transplant done because it has given me 5 1/2 years I never would have had. That has resulted in the development of some of the greatest friendships ever, awesome opportunities I never would have had, incredible spiritual growth, change in perspective of my life mission, and a chance to see G-PACT grow and make progress. I have a different love for all people from all backgrounds, and have matured and grown in so many ways that it's been worth the extra time. I absolutely love life and living.
It pains me that I can't honestly answer questions of my physical QOL being any better. In so many ways I physically struggle a lot more now than I did then. I have a lot more chronic pain and more difficulty walking and moving around. My muscles, while always weak, have become even more stiff, sore, and weak. I fall a lot more. My nausea never goes away and has reached even more of a debilitating level most of the time. My conditions have become even more complicated as they are opposite now and work against each other. I have developed more problems since, either as a result of the transplant or the underlying condition progressing. I am more limited in my treatment options due to my immune suppression, transplant medications, and need to protect the fragility of my transplanted organs and my body in general. This is still a new transplant with limited long-term statistics, so average lifespan of the new graft is still being evaluated. I spend many days in bed so weak and sometimes I am even unable to even roll over from one side to the other. I have to be more aware of any changes to my body and know that any change could mean rejection of the organs or a serious disease process beginning that my weakened immune system may not be able to fight off.
Mentally I am healthier and in that sense my QOL is much improved. Physically, three years ago I could have said that my health was also much better, but now...no. I so want to encourage Kareem and the transplant team. I would never go anywhere else or recommend any other center for this transplant. I want them to have incredible results with everyone and great responses to each survey after all the time and work they put into the life of every single patient...the long days of transplant (can be 16-24 hours depending, Kareem even has a cot in the OR), the long hours in clinic, middle of the night phone calls for emergencies awakening them from sleep at home and bringing them in, the long meetings and time poured into preparation, evaluation, pre-transplant care, post-transplant care, and lifelong follow up. Kareem has an uncanny ability to be able to identify that something is wrong and exactly what it is by a simple glance at a patient, an ability that is inborn and not learned. He gives his patients his personal cell phone number to call "anytime you need me." I want his program to show ultimate success. He and the Pittsburgh team invented it, after all, and do by far the most in people who travel from all over the world. Their success rate is the highest by at least 10 percentage points over any other center.
Of course, "survival" is one thing and "quality of life" is another. Am I success if I am alive with a poor QOL? I had a fabulous three years post-transplant with minimal complications, lots of good food, and few hospitalizations. I was able to rebuild a significant portion of my life during that time and started to do things that I can't even imagine stopping now, in spite of how my health has deteriorated. I could never imagine my life again without church, volunteer work, G-PACT, my friends, my Life Group, my social life, driving, or the many things I started to do to live normally again during my three much healthier years. In that sense, yes, I am definitely a success and my QOL is far, far better than it was 5 1/2 years ago in spite of increased and long hospital stays, tube feedings, IV fluids, and the many, many symptoms and complications I battle on a daily basis. Improvement in my QOL in those areas will take me so far in my ability to overcome the current and future physical challenges because I have more I want to live for. There are so many things I will not drop because during my three healthier years these activities and changes became part of me and things I can't imagine my life without.
So, although I will answer this QOL survey and know that physically my responses will not look good on the long term outcome of this transplant in me personally, at least at this stage in the process, my responses to any questions relating to the psychological, spiritual, mental, and social health QOL will put Kareem and the dream team at the top of the charts. While I wish I could rank higher on the physical side, I am glad that I can rank them high in terms of my recovery in the other very important aspects of my life. Aspects that are simply the result of recognizing how precious this life is, how "precious of a patient" I am, an how important it is to fight with everything I have got to NOT let this take me down or take me back to where I was pre-transplant. As long as I have a good QOL in all other aspects, I can manage the physical battle and decreased physical QOL much better than I could 5 1/2 years ago when I had a poor QOL overall.
Quality of life is much more than just physical well being and physical health. It also has everything to do with me as a whole person and my ability to live, dream, love, think, imagine, and still be able to enjoy life in spite of the very, very difficult physical issues I am forced to manage every single day.
Saturday, December 10, 2011
Peace for the mission
What's on my mind? A lot...Just resting today. I'm really, really tired and had a rough night. Did I mention yet how happy I am to be home again? I keep coming home and think I'll be ok, but then keep going back. I hope we can slow that down. I need to be home. It's been a tough few months. I've lost track and it all runs together, but I'm sure I've been in the hospital way more than out since mid-July.
I feel so peaceful though...I can really feel like people are praying for me because I just have so much peace. That doesn't mean this is easy, doesn't suck, that I like it, and that I don't get frustrated or scared, but I am at peace and have accepted things. I still have hope. I feel like people really are surrounding me with love and prayers and it's really sustaining me through this.
I don't know what I'd do without my faith in God. I know He is there for me and knows every minute detail and struggle I have. He cares. He intervenes. He calms my fears when I give them to Him. He knows what is best for me, even if I don't think it is best! I know He is using me and my challenges to do His work. I don't know why it has to be so hard, but He is with me every step of the way guiding me and helping me realize that even though I am so physically weak, He is still able to use me. By being weak I am actually really strong.
I am always amazed how I can be so upset and scared, but then a prayer lifted up for me by someone, or through my own prayers and Bible reading, I develop a peace that can't be described. You just have to experience it. I'm human...of course I struggle with turning everything over to Him when I know He could fix everything with one act, of course I question, but for some reason He has chosen to use me and my circumstances to complete some mission He has for me here. He doesn't want anyone else to do it. He knew before He created me what He had planned for me and created me with the ability to complete it. I know He has my life in His hands, He is in control, and that He will sustain me and provide me with everything I need, including the strength, to complete the mission He has for my life.
Thanks for the prayers. They are working and I definitely feel them!
I feel so peaceful though...I can really feel like people are praying for me because I just have so much peace. That doesn't mean this is easy, doesn't suck, that I like it, and that I don't get frustrated or scared, but I am at peace and have accepted things. I still have hope. I feel like people really are surrounding me with love and prayers and it's really sustaining me through this.
I don't know what I'd do without my faith in God. I know He is there for me and knows every minute detail and struggle I have. He cares. He intervenes. He calms my fears when I give them to Him. He knows what is best for me, even if I don't think it is best! I know He is using me and my challenges to do His work. I don't know why it has to be so hard, but He is with me every step of the way guiding me and helping me realize that even though I am so physically weak, He is still able to use me. By being weak I am actually really strong.
I am always amazed how I can be so upset and scared, but then a prayer lifted up for me by someone, or through my own prayers and Bible reading, I develop a peace that can't be described. You just have to experience it. I'm human...of course I struggle with turning everything over to Him when I know He could fix everything with one act, of course I question, but for some reason He has chosen to use me and my circumstances to complete some mission He has for me here. He doesn't want anyone else to do it. He knew before He created me what He had planned for me and created me with the ability to complete it. I know He has my life in His hands, He is in control, and that He will sustain me and provide me with everything I need, including the strength, to complete the mission He has for my life.
Thanks for the prayers. They are working and I definitely feel them!
The strength in the scars
I look at my abdomen, my neck, arms and chest. They are battered and bruised, sliced, off colored, and malformed. I have one vertical scar that goes from my pelvic area all the way up to my chest with scars beside it from over 70 staples. That scar is crossed with a long horizontal scar that goes across my entire abdomen from side to side. Next to it there is scar tissue from over 70 staples which were placed to hold 5 new organs in place. Both of those scars are at least a foot long. I have scars on my chest from years of IV lines. I have a hole in my abdomen from which a tube emerges. There is a large cut on my chest with a bulging area where a port is located under my skin, and it is not a pretty sight. Both the tube and the port are my lifelines right now.
My abdomen is not pretty. My neck is covered with scars and indicate the challenges of years of chronic illness. My arms and hands are purple and off-color. I have areas in my abdomen where I appear to have several belly buttons from old j-tube and g-tube sites. My scars are not beautiful to see. They are ugly. But I love them. They are a constant reminder of the battle I fight and how much I can overcome. They show me every single day that I am STRONG and can overcome pain and suffering and still move on with life. I don't hide behind my scars. I will show them off proudly if you ask because they show my strength and remind me that I can overcome anything. They are an indication of the pain that I have endured. They prove that I will do whatever it takes to keep fighting. The pain I deal with in life is worth the opportunity to keep living. Pain brings strength and leads to healing. So often pain must occur before healing can begin.
“Scar tissue is stronger than regular tissue. Realize the strength, move on.”
Henry Rollins
"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars" - Kahlil Gibran
"It's a shallow life that doesn't give a person a few scars." - Garrison Keillor
"Every winner has scars." - Robert N. C. Nix
"Turn your scars into stars." - Robert H. Schuller
My abdomen is not pretty. My neck is covered with scars and indicate the challenges of years of chronic illness. My arms and hands are purple and off-color. I have areas in my abdomen where I appear to have several belly buttons from old j-tube and g-tube sites. My scars are not beautiful to see. They are ugly. But I love them. They are a constant reminder of the battle I fight and how much I can overcome. They show me every single day that I am STRONG and can overcome pain and suffering and still move on with life. I don't hide behind my scars. I will show them off proudly if you ask because they show my strength and remind me that I can overcome anything. They are an indication of the pain that I have endured. They prove that I will do whatever it takes to keep fighting. The pain I deal with in life is worth the opportunity to keep living. Pain brings strength and leads to healing. So often pain must occur before healing can begin.
“Scar tissue is stronger than regular tissue. Realize the strength, move on.”
Henry Rollins
"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars" - Kahlil Gibran
"It's a shallow life that doesn't give a person a few scars." - Garrison Keillor
"Every winner has scars." - Robert N. C. Nix
"Turn your scars into stars." - Robert H. Schuller
Monday, November 28, 2011
The common bond that can't be broken
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.
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.
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.
Thursday, October 13, 2011
Mind vs. Energy
I apologize for the LONG delay in updating my blog. I've been really busy, sick, and in the hospital most of the time for the past three months. I just got discharged after a 30 day stay which started at Hershey Medical Center for two weeks and ended after a transfer to the University of Pittsburgh for an additional two weeks.
You know the saying "your eyes are bigger than your stomach" meaning that often people put more food on their plates than they can actually finish eating because so much looks good? My mind is bigger than my body. I tend to put more on my to-do platter than I can actually finish. The good thing about being this way is I am HIGHLY motivated to not stay in bed or stay at home when I have an opportunity to get out. I like to make plans to do things. That's healthy...to an extent. Staying in bed too much makes me depressed and then I feel worse. The bad thing about being this way is, even though it's healthy to be out and active, I also have a tendency to NOT pay attention to my body. I follow my mind and desires and then I physically overdo it.
I promised myself in the hospital that when I got out I'd modify some things and not try to do AS much because I physically wore myself down. I think that's partly why I was unable to fight off so much stuff. Unfortunately, I'm not very good at taking things slowly and just jump back in to everything. I tend to just run and run until I hit a brick wall that forces me to stop, like the hospital or a complete physical crash. I think I am going to have to chop out some of my plans out this weekend, although that is a really difficult thought for me because I want to do everything there is to do! This is the result of years of being totally bedridden before my transplant and almost losing the opportunity to do ANYTHING or to live life at all. I'm grateful to be alive and just want to be a part of everything and live life to the fullest. Sometimes I tell myself I will kill myself at this rate doing so much, but I would rather die as a result of having overdone it than not having done it at all!
I'm tired today. I'm tired every day. I have lost a lot of stamina from being in the hospital which I am trying to build back up, but even then, I've been tired every day for years. Not just your typical "it's part of life" tired, but tired to the point that everything I do takes so much motivation and effort. I always have to put so much effort into putting my mind over my body to get even the most basic things accomplished. I don't understand why sometimes I can't even lean down to pick up a piece of trash I dropped on the floor, or why opening mail and reading it takes so much effort, but I just don't have enough energy for the simplest tings like that. It makes me feel lazy. I know I am not lazy. I know I am fighting a tough physical battle, but by society's standards, I appear to be lazy because I just can't do things that seem so simple sometimes or I do them very slowly.
Most days it is so hard for me to get out. I may "look good," but I put a tremendous amount of effort into just getting a shower in the morning, or the night before since I have to plan out all my events for each day to conserve "spoons," (read the spoon theory at www.butyoudontlooksick.com). In fact, sometimes I just spray myself, put on lotion, wash my face, change my underwear, and throw on a hat because I haven't had enough energy to shower for three or four days. No one has any idea how much effort I exert while out just to try to be and "appear" as normal as possible. While I look energetic and and enjoy every minute I am doing something, I am also very aware that I am putting out twice as much effort to look and feel that way than someone who is healthy. It often takes so much energy just to think enough to carry on a clear, reasonable conversation sometimes. Concentration is difficult, so I also tire out mentally very quickly because it takes so much out of me to focus. I need a full day off in between every busy day out. I have trouble returning phone calls because I get tired talking on the phone much. Recently, I've even had trouble keeping up with tasks I used to be on top of like ordering my meds or other medical supplies on time, putting planned events on my calendar, or keeping track of my life in general.
I wish I knew what it was like to be exhausted because of a full week's worth of work. Instead, I feel like that after just one day. Even if I feel pretty good while I am out, I always get home and collapse into bed. Sometimes I don't even have the energy to change into my PJ's, or I have to do it, literally, one article of clothing at a time while laying in bed. I can't imagine coming home, cooking dinner, cleaning up, having kids to take care of, and go out with friends and participate in other social or volunteer things. I wish I knew what complete physical exhaustion from that was like.
You know the saying "your eyes are bigger than your stomach" meaning that often people put more food on their plates than they can actually finish eating because so much looks good? My mind is bigger than my body. I tend to put more on my to-do platter than I can actually finish. The good thing about being this way is I am HIGHLY motivated to not stay in bed or stay at home when I have an opportunity to get out. I like to make plans to do things. That's healthy...to an extent. Staying in bed too much makes me depressed and then I feel worse. The bad thing about being this way is, even though it's healthy to be out and active, I also have a tendency to NOT pay attention to my body. I follow my mind and desires and then I physically overdo it.
I promised myself in the hospital that when I got out I'd modify some things and not try to do AS much because I physically wore myself down. I think that's partly why I was unable to fight off so much stuff. Unfortunately, I'm not very good at taking things slowly and just jump back in to everything. I tend to just run and run until I hit a brick wall that forces me to stop, like the hospital or a complete physical crash. I think I am going to have to chop out some of my plans out this weekend, although that is a really difficult thought for me because I want to do everything there is to do! This is the result of years of being totally bedridden before my transplant and almost losing the opportunity to do ANYTHING or to live life at all. I'm grateful to be alive and just want to be a part of everything and live life to the fullest. Sometimes I tell myself I will kill myself at this rate doing so much, but I would rather die as a result of having overdone it than not having done it at all!
I'm tired today. I'm tired every day. I have lost a lot of stamina from being in the hospital which I am trying to build back up, but even then, I've been tired every day for years. Not just your typical "it's part of life" tired, but tired to the point that everything I do takes so much motivation and effort. I always have to put so much effort into putting my mind over my body to get even the most basic things accomplished. I don't understand why sometimes I can't even lean down to pick up a piece of trash I dropped on the floor, or why opening mail and reading it takes so much effort, but I just don't have enough energy for the simplest tings like that. It makes me feel lazy. I know I am not lazy. I know I am fighting a tough physical battle, but by society's standards, I appear to be lazy because I just can't do things that seem so simple sometimes or I do them very slowly.
Most days it is so hard for me to get out. I may "look good," but I put a tremendous amount of effort into just getting a shower in the morning, or the night before since I have to plan out all my events for each day to conserve "spoons," (read the spoon theory at www.butyoudontlooksick.com). In fact, sometimes I just spray myself, put on lotion, wash my face, change my underwear, and throw on a hat because I haven't had enough energy to shower for three or four days. No one has any idea how much effort I exert while out just to try to be and "appear" as normal as possible. While I look energetic and and enjoy every minute I am doing something, I am also very aware that I am putting out twice as much effort to look and feel that way than someone who is healthy. It often takes so much energy just to think enough to carry on a clear, reasonable conversation sometimes. Concentration is difficult, so I also tire out mentally very quickly because it takes so much out of me to focus. I need a full day off in between every busy day out. I have trouble returning phone calls because I get tired talking on the phone much. Recently, I've even had trouble keeping up with tasks I used to be on top of like ordering my meds or other medical supplies on time, putting planned events on my calendar, or keeping track of my life in general.
I wish I knew what it was like to be exhausted because of a full week's worth of work. Instead, I feel like that after just one day. Even if I feel pretty good while I am out, I always get home and collapse into bed. Sometimes I don't even have the energy to change into my PJ's, or I have to do it, literally, one article of clothing at a time while laying in bed. I can't imagine coming home, cooking dinner, cleaning up, having kids to take care of, and go out with friends and participate in other social or volunteer things. I wish I knew what complete physical exhaustion from that was like.
Sunday, May 15, 2011
Lost in Transition
When I was a Child Life Intern over the summer of 1999 in preparation for what I hoped would give me experience for the field I was pursuing as a career, Art Therapy with terminally ill children, I learned something interesting about "older" patients with CF (Cystic Fibrosis). Not too many years ago, it was expected that CF patients would not live beyond their teens or early 20's. For this reason, after high school they typically didn't make any long term plans for life. Few went to college and most focused on just getting part-time jobs and not really planning long term.
However, as technology advanced and and new treatments were developed, CF patients started to live longer lives and found themselves living well into their late 20's, 30's, and in some cases, even 40's and 50's. This put them in a transition period which often led to depression. They began to feel like they should be doing more with their lives. They had dreams, but weren't sure if they were worth pursuing as they continued to age and deteriorate. If they had known in advance they would have lived that long, they would have begun a career and gone to college. But they were still in limbo. They were basically waiting to die as it could come at any time, but they also may not...they may still have years left.
While none of us knows when we are going to die and should always live each day as if it is our last, we also shouldn't live in fear and not work towards the future because we DON'T know. Unfortunately, with people facing chronic, serious illnesses in which major complications could come at any time, life and decision making is very complicated. Plus, if you already have so many complications interfering, overcoming obstacles just to reach dreams and goals will take longer than an average person. It can be discouraging. Making the decisions to step out and pursue big dreams is even more complicated. Is it reasonable? Will I invest a lot into it, only to have to stop because of all the challenges? My body rules me- there is no way around it. While I have limited control in how I feel by forcing myself to think positively, get out and do good things, focus on others, and not let my challenges rule everything, the fact is, my body tells me what to do every day and I don't know from one day to the next what it will tell me.
Right now I am in what I consider to be a period of transition. In some ways this is good, in some ways it is bad. I think it's more good than bad as I am thinking in more healthy terms, but I am doing it during a time where my body is not physically strong enough to really pursue my dreams. The obstacles are huge. I don't know that it's even reasonable to consider the things I am thinking about, but I'm not one to let impossible or difficult get in my way. Perhaps the fact that I am dealing with so much has made my dreams and desire to fulfill them become even stronger?
Right now I don't know what my future holds. As I see my body deteriorating, I also see my visions and dreams changing in even bigger ways. There are things I want to do with my life that seem virtually impossible at this stage, yet seem to be overwhelming my mind. These are things that I have been considering for months, perhaps even a year, yet I have put in the back of my mind because I have considered them to be unreasonable and have felt that the time is not yet right to pursue them. However, as recent events in my life have unfolded and I have learned and experienced new things, dealt with recent challenges, and know I see a future of so many more complications, I feel like it is time to step out of the comfort zone I am in and make some big changes in my life.
I'm scared. Why? What I do right now is safe. I'm used to it. It lets me set my own pace, my own life, and gives me a chance to live my life around my health- something I need the flexibility of doing, yet it doesn't really challenge me in the ways I want to be challenged. I don't let this flexibility make me lazy. I have built things into my life to force myself to do some things that I often have to stretch myself so hard to do so that I don't get lazy. I don't want to spend my time at home within my limitations and let myself fall into a trap of thinking I am too sick to leave home and do some more active things. Sometimes do have a deadline I need to reach or require goal setting in order to achieve them. I need more stability. I need some changes in my life. My schedule has become monotonous. My life is starting to become boring and lonely. While it is fulfilling, satisfying, and I know God-led, I am beginning to feel like He is leading me in a different direction.
I feel like right now I am lost in transition. I want to make changes, but I realize that the changes I want to make are so big and so complicated. Things are getting harder for me all the time. Walking is a challenge. I have difficulty concentrating and learning. I keep developing new problems. I have some days when I actually feel worse than I did pre-transplant now, but I also have days when I feel really good. My health is still so unpredictable. Sometimes I honestly feel like things are improving, and then I get nailed with something else. Even one hour to the next is unpredictable. I can get up, go out, and then not feel safe driving home because I have a sudden attack and crash. I tend to fall and stumble a lot. I can only work on some projects requiring much concentration for short periods of time. My energy is so limited. Some days I am loaded with energy, while others I can barely lift my head off my pillow. My sleep patterns are messed up and based on meds, health crashes, nights of severe pain and nausea, and other medical factors out of my control. I have no control. My body truly defines just about everything I do. I have to overpower it sometimes and ignore as much as I can in order to go out and enjoy some normal things, but more often than not my activities in life are defined by my body.
I'm not even sure where these desires are coming from. Are they a calling from God? Are they emotional and impacted by recent challenges and changes in my life? Are they really things I should genuinely pursue or just lost dreams I can't give up? Are they related to my medications, or chemical and nutritional imbalances as I adjust to new tube feeding formula? Should I just dive in, or should I really lay it out and wait to see how my body responds medically to recent and upcoming changes? How do I overcome the obstacles I forsee? Some of the things I am considering will require giving up or limiting other huge parts of my life and other activities I am involved in. These are things I love doing, feel like I am called to do, but will have to be scaled back or stopped if I pursue my other passions or activities. These are not easy decisions. I am trying to figure out how to bring more normalcy into my life, gain more independence, while recognizing that my body is actually forcing me to become more dependent on others and even less normal as my conditions progress and I develop more complications.
I know I am a fighter. Impossible is not a word in my vocabulary. If there is something I feel strongly about, I will find a way to do it. It may seem cliche, but I do honestly believe that if I am supposed to do something, nothing will get in God's way of me doing it. But, we also have to take our own steps of faith and follow the lead. If it is guidance or a whisper from God that He has other plans for me, I know He will provide. I need to think a lot through and take that step of faith if I believe it is the right one. But it has major consequences. My decision could impact the lives of thousands if not handled correctly. It will change my life. I could potentially give up some things that have been such a big part of my life. I'm scared. I cry a lot because I am so confused and I am not sure what the source of these thoughts and emotions are. I want to do so much, but I don't want to have to give anything up in the process. I want to try new things, learn new things, and see if I can achieve so many other dreams.
I don't know what my future holds. I don't know if I have one year left, five years left, or 20 years left. All I know is that I feel like there is more to my life...more I am supposed to be doing. Different things than what I have been doing. Something that requires a significant commitment to something else and a really big change in life direction. It's difficult for me because my physical limitations will always hold me back to an extent. I have been able to handle what I have done for years and I feel safe there. But I also feel bored and frustrated. Is it time to consider some new ventures? Are these new ventures even reasonable or possible?
It's so easy for me to get frustrated and lonely because I don't live the typical life. Days can be long and social planning challenging. Because everyone else works all day, I spend days at home, staring at my computer, and often go all day with no one to talk to or interact with in person. My body operates on a different schedule than most and is so unpredictable that planning social activities can also be challenging when everyone else has such a limited, less flexible schedule for social planning.
I just want to be normal...I long to work all day, come home, cook dinner, and then spend the evening like everyone else...whether it be paying bills, doing laundry, taking care of kids or collapsing on the couch after a long, full day of work...too tired to even check my Facebook messages. I'm 33, dependent, still at home, not working, and just lost...lost between being too unhealthy to live normally and independently, yet being too well to spend my days isolated and trapped in my home waiting for the next medical crisis. It is unpredictable. It may come tomorrow, or it may not come for six months.
However, as technology advanced and and new treatments were developed, CF patients started to live longer lives and found themselves living well into their late 20's, 30's, and in some cases, even 40's and 50's. This put them in a transition period which often led to depression. They began to feel like they should be doing more with their lives. They had dreams, but weren't sure if they were worth pursuing as they continued to age and deteriorate. If they had known in advance they would have lived that long, they would have begun a career and gone to college. But they were still in limbo. They were basically waiting to die as it could come at any time, but they also may not...they may still have years left.
While none of us knows when we are going to die and should always live each day as if it is our last, we also shouldn't live in fear and not work towards the future because we DON'T know. Unfortunately, with people facing chronic, serious illnesses in which major complications could come at any time, life and decision making is very complicated. Plus, if you already have so many complications interfering, overcoming obstacles just to reach dreams and goals will take longer than an average person. It can be discouraging. Making the decisions to step out and pursue big dreams is even more complicated. Is it reasonable? Will I invest a lot into it, only to have to stop because of all the challenges? My body rules me- there is no way around it. While I have limited control in how I feel by forcing myself to think positively, get out and do good things, focus on others, and not let my challenges rule everything, the fact is, my body tells me what to do every day and I don't know from one day to the next what it will tell me.
Right now I am in what I consider to be a period of transition. In some ways this is good, in some ways it is bad. I think it's more good than bad as I am thinking in more healthy terms, but I am doing it during a time where my body is not physically strong enough to really pursue my dreams. The obstacles are huge. I don't know that it's even reasonable to consider the things I am thinking about, but I'm not one to let impossible or difficult get in my way. Perhaps the fact that I am dealing with so much has made my dreams and desire to fulfill them become even stronger?
Right now I don't know what my future holds. As I see my body deteriorating, I also see my visions and dreams changing in even bigger ways. There are things I want to do with my life that seem virtually impossible at this stage, yet seem to be overwhelming my mind. These are things that I have been considering for months, perhaps even a year, yet I have put in the back of my mind because I have considered them to be unreasonable and have felt that the time is not yet right to pursue them. However, as recent events in my life have unfolded and I have learned and experienced new things, dealt with recent challenges, and know I see a future of so many more complications, I feel like it is time to step out of the comfort zone I am in and make some big changes in my life.
I'm scared. Why? What I do right now is safe. I'm used to it. It lets me set my own pace, my own life, and gives me a chance to live my life around my health- something I need the flexibility of doing, yet it doesn't really challenge me in the ways I want to be challenged. I don't let this flexibility make me lazy. I have built things into my life to force myself to do some things that I often have to stretch myself so hard to do so that I don't get lazy. I don't want to spend my time at home within my limitations and let myself fall into a trap of thinking I am too sick to leave home and do some more active things. Sometimes do have a deadline I need to reach or require goal setting in order to achieve them. I need more stability. I need some changes in my life. My schedule has become monotonous. My life is starting to become boring and lonely. While it is fulfilling, satisfying, and I know God-led, I am beginning to feel like He is leading me in a different direction.
I feel like right now I am lost in transition. I want to make changes, but I realize that the changes I want to make are so big and so complicated. Things are getting harder for me all the time. Walking is a challenge. I have difficulty concentrating and learning. I keep developing new problems. I have some days when I actually feel worse than I did pre-transplant now, but I also have days when I feel really good. My health is still so unpredictable. Sometimes I honestly feel like things are improving, and then I get nailed with something else. Even one hour to the next is unpredictable. I can get up, go out, and then not feel safe driving home because I have a sudden attack and crash. I tend to fall and stumble a lot. I can only work on some projects requiring much concentration for short periods of time. My energy is so limited. Some days I am loaded with energy, while others I can barely lift my head off my pillow. My sleep patterns are messed up and based on meds, health crashes, nights of severe pain and nausea, and other medical factors out of my control. I have no control. My body truly defines just about everything I do. I have to overpower it sometimes and ignore as much as I can in order to go out and enjoy some normal things, but more often than not my activities in life are defined by my body.
I'm not even sure where these desires are coming from. Are they a calling from God? Are they emotional and impacted by recent challenges and changes in my life? Are they really things I should genuinely pursue or just lost dreams I can't give up? Are they related to my medications, or chemical and nutritional imbalances as I adjust to new tube feeding formula? Should I just dive in, or should I really lay it out and wait to see how my body responds medically to recent and upcoming changes? How do I overcome the obstacles I forsee? Some of the things I am considering will require giving up or limiting other huge parts of my life and other activities I am involved in. These are things I love doing, feel like I am called to do, but will have to be scaled back or stopped if I pursue my other passions or activities. These are not easy decisions. I am trying to figure out how to bring more normalcy into my life, gain more independence, while recognizing that my body is actually forcing me to become more dependent on others and even less normal as my conditions progress and I develop more complications.
I know I am a fighter. Impossible is not a word in my vocabulary. If there is something I feel strongly about, I will find a way to do it. It may seem cliche, but I do honestly believe that if I am supposed to do something, nothing will get in God's way of me doing it. But, we also have to take our own steps of faith and follow the lead. If it is guidance or a whisper from God that He has other plans for me, I know He will provide. I need to think a lot through and take that step of faith if I believe it is the right one. But it has major consequences. My decision could impact the lives of thousands if not handled correctly. It will change my life. I could potentially give up some things that have been such a big part of my life. I'm scared. I cry a lot because I am so confused and I am not sure what the source of these thoughts and emotions are. I want to do so much, but I don't want to have to give anything up in the process. I want to try new things, learn new things, and see if I can achieve so many other dreams.
I don't know what my future holds. I don't know if I have one year left, five years left, or 20 years left. All I know is that I feel like there is more to my life...more I am supposed to be doing. Different things than what I have been doing. Something that requires a significant commitment to something else and a really big change in life direction. It's difficult for me because my physical limitations will always hold me back to an extent. I have been able to handle what I have done for years and I feel safe there. But I also feel bored and frustrated. Is it time to consider some new ventures? Are these new ventures even reasonable or possible?
It's so easy for me to get frustrated and lonely because I don't live the typical life. Days can be long and social planning challenging. Because everyone else works all day, I spend days at home, staring at my computer, and often go all day with no one to talk to or interact with in person. My body operates on a different schedule than most and is so unpredictable that planning social activities can also be challenging when everyone else has such a limited, less flexible schedule for social planning.
I just want to be normal...I long to work all day, come home, cook dinner, and then spend the evening like everyone else...whether it be paying bills, doing laundry, taking care of kids or collapsing on the couch after a long, full day of work...too tired to even check my Facebook messages. I'm 33, dependent, still at home, not working, and just lost...lost between being too unhealthy to live normally and independently, yet being too well to spend my days isolated and trapped in my home waiting for the next medical crisis. It is unpredictable. It may come tomorrow, or it may not come for six months.
Monday, May 9, 2011
Recent Events - My Status
A lot has happened physically and emotionally, but people often only get bits and pieces. Then I get asked a lot of questions I think people always have the answers to, only to find out they don't...but someone else has the answers to other things! I'll do my best to summarize what I can...it's been a while, so this is long, but the final requests are at the bottom as far as where I am now and what my greatest needs are.
A few weeks ago I started having a lot of problems with nausea, vomiting, pain, sleeping constantly, and diarrhea. Nothing had been changed, other than a very slight drop in my Cortef (steroids). After two trips to Hershey Med's ER for dehydration, I was admitted for a week for testing, dehydration, and malnutrition. I went to my doctor and found out I was running a low grade temp, something to be concerned about because it could be a sign of rejection.
After a week of testing, fluids, and a dose of sandostatin (octreotide) for the dumping syndrome, nothing new was found and they sent me home to manage the problems as usual. They encouraged me to go to Pittsburgh, but I really felt like I was just in a flare up and there wasn't anything new to be concerned about. Unfortunately, after just four days I was dehydrated again, in worse shape than I had been upon admission, and went back to my doctor. Once again, I was running a low grade fever. She said to call Pittsburgh. My mom did on the spot and Pittsburgh sent me to the ER with orders to have me transferred to UPMC from the Hershey Med ER. Unfortunately, in spite of what we told the doctor, he insisted that Pittsburgh had not made those orders and he was just to give me fluids and send me home. The next day, my coordinator called and asked where I was and what had happened. We told her what the doctor said, and she insisted that she absolutely did NOT tell him to not transfer me and to go back to Hershey and have my labs checked again. We did. I was feeling very sick and we waited there all day to hear back from Pittsburgh. In the end, they decided it would be safe for me to travel that day by car and come to clinic the following day.
On Thursday morning, clinic day, I saw Dr. Kareeem. He ran a bunch of blood tests and said it would be ok for me to go home for Easter weekend and return on Sunday night. He had my coordinator set me up for a week of testing the next week. This included a CT angio, biopsy, bunch of labs, and appointments with various doctors. I am severely allergic to CT contrast and had been scheduled for that on Monday morning. After learning of this, they decided to postpone the angio until Tuesday, give me lots of fluids, start me on prednisone for three doses, and IV benadryl an hour before the procedure along with more fluids. The angio came out BEAUTIFULLY! I got to see it in 3D on Thursday and the organs looked really cool! Dr. Kareem showed me my kidneys, spleen, stomach, liver, both pancreas', where the arteries were attached, and even bits and pieces of my old organs (which were definitely dead and ugly!). He said the images were so good and clear he was going to have a poster made for his office. He was serious too! Apparently I am going to be the second patient who has a big poster of my organs in his office!
Otherwise, we learned what I had suspected and the main reason I didn't really want to go back. Basically, I'm just dealing with the chronic stuff and there's not a whole lot they can do...it's management and dealing with the flare ups as they come. He did increase my steroids for energy and started me on some other new things too. He decided to change my tube feeding formula to see if something else would help.
That was a tough week in other ways though. That week, on Wednesday, a good friend who was transplanted around the same time that I was made the decision that after 16 months in the hospital dealing with one horror after another, that she was tired of being so sick. She continued to get bleeds and they told her eventually they wouldn't be able to stop one and she would bleed to death. Knowing this, she didn't want to suffer anymore or die that way. She asked to be removed from the vent. Before they put her on the vent that Wednesday, she had talked to her mom about it and begged her to let her go. Then she called her dad and told him that she was ready to let go and to please start driving to Pittsburgh...that she loved him.
I went to see her on Thursday afternoon. It was really tough...she knew I was there, but she was kind of out of it too. I just really wished there was more I could do for her. I talked to her mom quite a bit...her mom has been a rock for Angie over the years and always by her side. I asked how SHE (Linda) was doing, and she said..."Carissa, she just begged and begged and begged for us to let her go...it's been so long...she is so tired. I want to respect her wish." The family came in on Thursday and the final decision was made. The transplant doctors would have nothing to do with it, so the TICU docs stopped all the blood, TPN, fluids, dialysis, and all meds, except pain meds and sedation, on Thursday evening. On Friday Dr. Costa dropped by and was in tears. Around noon on Friday they pulled her off the vent and she passed within 30 minutes. They had music playing in the room at the time. Her mom was headed home to Ohio by that afternoon.
Upon Angie's request, she was buried in her blue jeans and with "Fuzzy." She was a tomboy and did not want to be buried in a dress! She was also an organ donor and reminded her mom of that, but unfortunately, due to all the infections her organs were not viable for donation. But, she gave back so much in others ways to all of us who knew her.
Her procession included her truck and her Stealth. 300-400 people attended, including nurses, doctors, and other transplant patients. Her influence on so many must have been clear! My friend, Jessica, also transplanted around the same time attended the funeral and spoke. Jessica, not typically one with a shortage of things to say, said it was the hardest thing she has ever had to do. Even though she had the speech written out, she couldn't speak...
That same night that Angie died, the transplant world lost another fabulous friend. Pauline Talty was a patient from Australia who was transplanted 19 months ago. She has been in the hospital more than out. She had been in the TICU in a coma for quite a while on a respirator. Unfortunately, there was no respirator strong enough to sustain her through her pneumonia. As they were attempting to put in an iron lung that night, she slipped away. Pauline's organs had completely rejected and her only option was another transplant. Dr. Kareem wanted to remove her organs and wait for new ones, but Linda (her mom) was not willing to make that decision and leave Pauline without organs when Pauline couldn't consent. In addition, Australia was not willing to pay for another transplant. They were hesitant about paying for the first and had to fight to even get to the states in the first place.
Pauline was a radiant Christian from Hillsong Church in Australia and I'm sure she met many other friends as she stormed through Heaven's gates that night, fully healed from her lifelong battle of health issues. Her mom, Linda, was also always at her side. I enjoyed our inpatient hallway conversations about the pointlessness of some of the things in the hospital, and Pauline gave me some hospital survival tips on the occasions we were in together.
We lost two beautiful women in less than 8 hours. It was one of the hardest days of my entire life...and obviously a really rough one for the UPMC transplant team too...the nurses, doctors, and all who loved, cared, and fought for both of them for so long...those who put so many hours into their lives and poured so much of themselves into each one. Needless to say, I was very depressed that weekend, but so thankful for my other transplant friends who were around that day so we could support each other through it...we texted, IMed on FB, and messaged each other to keep each other posted on everything...very tough...and I am so grateful for them and how close we all are. When one person has challenges or we lose one, it affects all of us equally...we are a family.
I've been home now for slightly over a week. I seem to be doing some better on the changes, but it's a bit early to tell. I did end up in the ER last Monday with a heart rate over 130 and low potassium and magnesium. Because I had just been released from the hospital, I talked to the doctor about taking the potassium orally with IV phenergan (to help with nausea caused by oral potassium) and avoid admission. They also gave me IV magnesium and fluids. My heart rate was so fast that in the ER they rushed me back so fast to a room and did an immediate EKG. They let me go home that night because they had managed to get my heart rate down with the fluids, potassium, and mag. We were worried about my long QT interval and history of cardiac arrest. I was dizzy, confused, sweating, and really weak when I went in. I felt much better the following morning. Once again, another LONG night in the ER as my dad and I got home around 5 AM.
I am eating some, or at least trying. It's not going well, but it's so important to keep pushing as much as I can. I have my days I really miss my g-tube in my stomach though for venting/draining and that's something I never thought I'd miss! It was just so much easier and pleasant to eat and know I could get rid of it without vomiting or having it hang around for days on end. I was much more interested in eating when I knew the consequences wouldn't be so bad for doing it! But it's something I didn't request of Kareem when he placed my j-tube because of the higher risk of infection. In the end, I might pursue it if this doesn't get under control and keeps eating up my life by being so sick and having to take phenergan (my nausea med, which makes me very sleepy!) all the time, but hopefully I can manage without going that route.
The most pressing issues are:
1. When I was having an endoscopy/biopsy done, the doctor must have either cracked or bruised a rib. I woke up from the procedure in a good deal of pain. Initially, I thought it was my typical liver pain, but it didn't get better and the pain only got worse. I also noticed the pain was more on my bones than anywhere inside. I have been in excruciating pain at times from it. Because i have osteoporosis, this is not necessarily surprising, but can be concerning as I am also on steroids and healing could be a problem. Since doctors don't do anything for cracked or bruised ribs anyway, I haven't been to get them x-rayed at all and am just trying to manage the pain. I am told it can take up to 4 weeks to heal, but am hopeful it won't take that long!
2. I just started my new tube feeding formula a few days ago. Pray that my body will adjust to the change. It's a slow process to switch because my body has been used to one kind, and now it is getting different nutrients. It's a diabetic formula, so we are hopeful that it will reduce dumping syndrome issues. It has fewer calories, unfortunately, but the hope is that if it doesn't make me as sick that I can orally make up for some of the lost calories. Right now I have to run it really slowly, and sometimes even stop it, because I am sick with the change. Pray that I don't lose much ground in the process of switching over and that this will help.
3. I am trying to get back into G-PACT again. I've been out of action for a while from being sick and there is a lot coming up. Please pray that I can catch up and get a number of big projects completed.
4. Although since Dr. K increased the steroids, I DO have more energy, I also don't like the side effects. They make me confused and moody at this level. Plus, they destroy my bones. The dose is very high! Although temporary until I get a boost of energy for a while, I am discouraged at being back up so high on them. We had been trying to come down. If this doesn't work, they will start me on Ritalin for energy. I may ask them to do that anyway. I would prefer a lower dose of Cortef and some ritalin than the side effects of the Cortef, even though Ritalin does some funky things to me too...they are more manageable!
5. I am trying to cut back on my nausea medication in order to keep from sleeping so much too, but my nausea is so severe. It's tough. I prefer to be alert and not dopey all the time, but nausea is tough for me...I can deal with pain a lot better! Unfortunately, my nausea meds are so limited. I am allergic to almost everything or they just don't work. Getting the dumping under control without aggravating the GP and CIP is complicated...but that's really the solution. Unfortunately, the right amount of sandostatin for the dumping is too much for the GP and CIP. For two years I have been trying to manage both, and it's been impossible. Please pray that some of the new meds will work. It's a new combination of things I am trying. I've taken them all before, but figuring out the doses so it's not too much of anything for either side is a challenge and something that will take a lot of trial and error...and even then, it's never going to be fully figured out because the GI tract is so complicated. As long as I can get it under more reasonable control though, I will be content.
Otherwise, things are going pretty well. I am celebrating my fifth transplant b-day (belated) on June 4th at the same time a friend is celebrating her 45th b-day. we have some fun stuff in mind! Nolan will be turning two this week and has started to talk quite a bit! He said "hi issa" today! He has the sweetest personality...such a happy kid!
I have been back at LCBC volunteering this past week quite a bit and plan to return to the Wheelhouse next week as long as my ribs are better. It's nice to be back. I get really bored and bummed out when I am stuck at home sick all the time!
Thanks for the prayers. In the midst of all this, God has been teaching me a lot. We're going through a series at LCBC that couldn't have come at a more perfect time. It's based on the book "The Land Between" by Jeff Minion who spoke at the Leadership Summit last summer. I bought the book then, but have just started reading it. The sermons have really been dead on each week in dealing with what I have had on my mind so much. Please read my blog from Saturday which expresses a lot of what has been on my mind as I deal with all of this...and so much more!
In closing, here are some of my most recent Carissaism's:
"With all the pain and all the tears, yet staying sane through all the years, I must be tough, I must still fight. Enough's enough, no end's in sight! I often feel like I'm so weak, I want a meal...too much to seek? I'll never stop my fight to "live," For what can top all those who give? Who've stuck by me through thick and thin, to make my life a win-win-win. I don't know why I have a chance, and when I cry, I also dance! Oh what an honor to be here now! Almost a goner I always WOW! There must be something I'm here to do, I hope I bring new life to you! My prayer is that God uses me, and as we chat that you will see, How God's great love is shining through, which I won't shove, but make anew!"
"Some people write & others speak. Some build & 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!"
"The difference between Dreamers and the Achievers is like night and day. Everyone has dreams. It's the Dreamers who get out of bed every morning and work on their dreams who become Achievers."
"I have my ups and I have my downs. I have my smiles and I have my frowns. I know what's real and how I feel. I want to know when you are low! I care to hear about your fear. I love to read about your need, I want to pray 'bout what you say. When all is well, oh please do tell! It's part of life, the fun and strife! We all should care, feel free to share, do life together, good or bad weather. Fight through the storms and daily norms. Not feel alone, in laugh or moan."
"Tough times on the road of life are like mud puddles. They may slow you down and you may get stuck for a while, but w/ enough drive, solid tread and by putting all gears in motion, you will have enough power to pull out of it and continue the journey"
A few weeks ago I started having a lot of problems with nausea, vomiting, pain, sleeping constantly, and diarrhea. Nothing had been changed, other than a very slight drop in my Cortef (steroids). After two trips to Hershey Med's ER for dehydration, I was admitted for a week for testing, dehydration, and malnutrition. I went to my doctor and found out I was running a low grade temp, something to be concerned about because it could be a sign of rejection.
After a week of testing, fluids, and a dose of sandostatin (octreotide) for the dumping syndrome, nothing new was found and they sent me home to manage the problems as usual. They encouraged me to go to Pittsburgh, but I really felt like I was just in a flare up and there wasn't anything new to be concerned about. Unfortunately, after just four days I was dehydrated again, in worse shape than I had been upon admission, and went back to my doctor. Once again, I was running a low grade fever. She said to call Pittsburgh. My mom did on the spot and Pittsburgh sent me to the ER with orders to have me transferred to UPMC from the Hershey Med ER. Unfortunately, in spite of what we told the doctor, he insisted that Pittsburgh had not made those orders and he was just to give me fluids and send me home. The next day, my coordinator called and asked where I was and what had happened. We told her what the doctor said, and she insisted that she absolutely did NOT tell him to not transfer me and to go back to Hershey and have my labs checked again. We did. I was feeling very sick and we waited there all day to hear back from Pittsburgh. In the end, they decided it would be safe for me to travel that day by car and come to clinic the following day.
On Thursday morning, clinic day, I saw Dr. Kareeem. He ran a bunch of blood tests and said it would be ok for me to go home for Easter weekend and return on Sunday night. He had my coordinator set me up for a week of testing the next week. This included a CT angio, biopsy, bunch of labs, and appointments with various doctors. I am severely allergic to CT contrast and had been scheduled for that on Monday morning. After learning of this, they decided to postpone the angio until Tuesday, give me lots of fluids, start me on prednisone for three doses, and IV benadryl an hour before the procedure along with more fluids. The angio came out BEAUTIFULLY! I got to see it in 3D on Thursday and the organs looked really cool! Dr. Kareem showed me my kidneys, spleen, stomach, liver, both pancreas', where the arteries were attached, and even bits and pieces of my old organs (which were definitely dead and ugly!). He said the images were so good and clear he was going to have a poster made for his office. He was serious too! Apparently I am going to be the second patient who has a big poster of my organs in his office!
Otherwise, we learned what I had suspected and the main reason I didn't really want to go back. Basically, I'm just dealing with the chronic stuff and there's not a whole lot they can do...it's management and dealing with the flare ups as they come. He did increase my steroids for energy and started me on some other new things too. He decided to change my tube feeding formula to see if something else would help.
That was a tough week in other ways though. That week, on Wednesday, a good friend who was transplanted around the same time that I was made the decision that after 16 months in the hospital dealing with one horror after another, that she was tired of being so sick. She continued to get bleeds and they told her eventually they wouldn't be able to stop one and she would bleed to death. Knowing this, she didn't want to suffer anymore or die that way. She asked to be removed from the vent. Before they put her on the vent that Wednesday, she had talked to her mom about it and begged her to let her go. Then she called her dad and told him that she was ready to let go and to please start driving to Pittsburgh...that she loved him.
I went to see her on Thursday afternoon. It was really tough...she knew I was there, but she was kind of out of it too. I just really wished there was more I could do for her. I talked to her mom quite a bit...her mom has been a rock for Angie over the years and always by her side. I asked how SHE (Linda) was doing, and she said..."Carissa, she just begged and begged and begged for us to let her go...it's been so long...she is so tired. I want to respect her wish." The family came in on Thursday and the final decision was made. The transplant doctors would have nothing to do with it, so the TICU docs stopped all the blood, TPN, fluids, dialysis, and all meds, except pain meds and sedation, on Thursday evening. On Friday Dr. Costa dropped by and was in tears. Around noon on Friday they pulled her off the vent and she passed within 30 minutes. They had music playing in the room at the time. Her mom was headed home to Ohio by that afternoon.
Upon Angie's request, she was buried in her blue jeans and with "Fuzzy." She was a tomboy and did not want to be buried in a dress! She was also an organ donor and reminded her mom of that, but unfortunately, due to all the infections her organs were not viable for donation. But, she gave back so much in others ways to all of us who knew her.
Her procession included her truck and her Stealth. 300-400 people attended, including nurses, doctors, and other transplant patients. Her influence on so many must have been clear! My friend, Jessica, also transplanted around the same time attended the funeral and spoke. Jessica, not typically one with a shortage of things to say, said it was the hardest thing she has ever had to do. Even though she had the speech written out, she couldn't speak...
That same night that Angie died, the transplant world lost another fabulous friend. Pauline Talty was a patient from Australia who was transplanted 19 months ago. She has been in the hospital more than out. She had been in the TICU in a coma for quite a while on a respirator. Unfortunately, there was no respirator strong enough to sustain her through her pneumonia. As they were attempting to put in an iron lung that night, she slipped away. Pauline's organs had completely rejected and her only option was another transplant. Dr. Kareem wanted to remove her organs and wait for new ones, but Linda (her mom) was not willing to make that decision and leave Pauline without organs when Pauline couldn't consent. In addition, Australia was not willing to pay for another transplant. They were hesitant about paying for the first and had to fight to even get to the states in the first place.
Pauline was a radiant Christian from Hillsong Church in Australia and I'm sure she met many other friends as she stormed through Heaven's gates that night, fully healed from her lifelong battle of health issues. Her mom, Linda, was also always at her side. I enjoyed our inpatient hallway conversations about the pointlessness of some of the things in the hospital, and Pauline gave me some hospital survival tips on the occasions we were in together.
We lost two beautiful women in less than 8 hours. It was one of the hardest days of my entire life...and obviously a really rough one for the UPMC transplant team too...the nurses, doctors, and all who loved, cared, and fought for both of them for so long...those who put so many hours into their lives and poured so much of themselves into each one. Needless to say, I was very depressed that weekend, but so thankful for my other transplant friends who were around that day so we could support each other through it...we texted, IMed on FB, and messaged each other to keep each other posted on everything...very tough...and I am so grateful for them and how close we all are. When one person has challenges or we lose one, it affects all of us equally...we are a family.
I've been home now for slightly over a week. I seem to be doing some better on the changes, but it's a bit early to tell. I did end up in the ER last Monday with a heart rate over 130 and low potassium and magnesium. Because I had just been released from the hospital, I talked to the doctor about taking the potassium orally with IV phenergan (to help with nausea caused by oral potassium) and avoid admission. They also gave me IV magnesium and fluids. My heart rate was so fast that in the ER they rushed me back so fast to a room and did an immediate EKG. They let me go home that night because they had managed to get my heart rate down with the fluids, potassium, and mag. We were worried about my long QT interval and history of cardiac arrest. I was dizzy, confused, sweating, and really weak when I went in. I felt much better the following morning. Once again, another LONG night in the ER as my dad and I got home around 5 AM.
I am eating some, or at least trying. It's not going well, but it's so important to keep pushing as much as I can. I have my days I really miss my g-tube in my stomach though for venting/draining and that's something I never thought I'd miss! It was just so much easier and pleasant to eat and know I could get rid of it without vomiting or having it hang around for days on end. I was much more interested in eating when I knew the consequences wouldn't be so bad for doing it! But it's something I didn't request of Kareem when he placed my j-tube because of the higher risk of infection. In the end, I might pursue it if this doesn't get under control and keeps eating up my life by being so sick and having to take phenergan (my nausea med, which makes me very sleepy!) all the time, but hopefully I can manage without going that route.
The most pressing issues are:
1. When I was having an endoscopy/biopsy done, the doctor must have either cracked or bruised a rib. I woke up from the procedure in a good deal of pain. Initially, I thought it was my typical liver pain, but it didn't get better and the pain only got worse. I also noticed the pain was more on my bones than anywhere inside. I have been in excruciating pain at times from it. Because i have osteoporosis, this is not necessarily surprising, but can be concerning as I am also on steroids and healing could be a problem. Since doctors don't do anything for cracked or bruised ribs anyway, I haven't been to get them x-rayed at all and am just trying to manage the pain. I am told it can take up to 4 weeks to heal, but am hopeful it won't take that long!
2. I just started my new tube feeding formula a few days ago. Pray that my body will adjust to the change. It's a slow process to switch because my body has been used to one kind, and now it is getting different nutrients. It's a diabetic formula, so we are hopeful that it will reduce dumping syndrome issues. It has fewer calories, unfortunately, but the hope is that if it doesn't make me as sick that I can orally make up for some of the lost calories. Right now I have to run it really slowly, and sometimes even stop it, because I am sick with the change. Pray that I don't lose much ground in the process of switching over and that this will help.
3. I am trying to get back into G-PACT again. I've been out of action for a while from being sick and there is a lot coming up. Please pray that I can catch up and get a number of big projects completed.
4. Although since Dr. K increased the steroids, I DO have more energy, I also don't like the side effects. They make me confused and moody at this level. Plus, they destroy my bones. The dose is very high! Although temporary until I get a boost of energy for a while, I am discouraged at being back up so high on them. We had been trying to come down. If this doesn't work, they will start me on Ritalin for energy. I may ask them to do that anyway. I would prefer a lower dose of Cortef and some ritalin than the side effects of the Cortef, even though Ritalin does some funky things to me too...they are more manageable!
5. I am trying to cut back on my nausea medication in order to keep from sleeping so much too, but my nausea is so severe. It's tough. I prefer to be alert and not dopey all the time, but nausea is tough for me...I can deal with pain a lot better! Unfortunately, my nausea meds are so limited. I am allergic to almost everything or they just don't work. Getting the dumping under control without aggravating the GP and CIP is complicated...but that's really the solution. Unfortunately, the right amount of sandostatin for the dumping is too much for the GP and CIP. For two years I have been trying to manage both, and it's been impossible. Please pray that some of the new meds will work. It's a new combination of things I am trying. I've taken them all before, but figuring out the doses so it's not too much of anything for either side is a challenge and something that will take a lot of trial and error...and even then, it's never going to be fully figured out because the GI tract is so complicated. As long as I can get it under more reasonable control though, I will be content.
Otherwise, things are going pretty well. I am celebrating my fifth transplant b-day (belated) on June 4th at the same time a friend is celebrating her 45th b-day. we have some fun stuff in mind! Nolan will be turning two this week and has started to talk quite a bit! He said "hi issa" today! He has the sweetest personality...such a happy kid!
I have been back at LCBC volunteering this past week quite a bit and plan to return to the Wheelhouse next week as long as my ribs are better. It's nice to be back. I get really bored and bummed out when I am stuck at home sick all the time!
Thanks for the prayers. In the midst of all this, God has been teaching me a lot. We're going through a series at LCBC that couldn't have come at a more perfect time. It's based on the book "The Land Between" by Jeff Minion who spoke at the Leadership Summit last summer. I bought the book then, but have just started reading it. The sermons have really been dead on each week in dealing with what I have had on my mind so much. Please read my blog from Saturday which expresses a lot of what has been on my mind as I deal with all of this...and so much more!
In closing, here are some of my most recent Carissaism's:
"With all the pain and all the tears, yet staying sane through all the years, I must be tough, I must still fight. Enough's enough, no end's in sight! I often feel like I'm so weak, I want a meal...too much to seek? I'll never stop my fight to "live," For what can top all those who give? Who've stuck by me through thick and thin, to make my life a win-win-win. I don't know why I have a chance, and when I cry, I also dance! Oh what an honor to be here now! Almost a goner I always WOW! There must be something I'm here to do, I hope I bring new life to you! My prayer is that God uses me, and as we chat that you will see, How God's great love is shining through, which I won't shove, but make anew!"
"Some people write & others speak. Some build & 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!"
"The difference between Dreamers and the Achievers is like night and day. Everyone has dreams. It's the Dreamers who get out of bed every morning and work on their dreams who become Achievers."
"I have my ups and I have my downs. I have my smiles and I have my frowns. I know what's real and how I feel. I want to know when you are low! I care to hear about your fear. I love to read about your need, I want to pray 'bout what you say. When all is well, oh please do tell! It's part of life, the fun and strife! We all should care, feel free to share, do life together, good or bad weather. Fight through the storms and daily norms. Not feel alone, in laugh or moan."
"Tough times on the road of life are like mud puddles. They may slow you down and you may get stuck for a while, but w/ enough drive, solid tread and by putting all gears in motion, you will have enough power to pull out of it and continue the journey"
Saturday, May 7, 2011
My life matters...YOUR life matters. Change the world!
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!
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