It has been a tough couple of days. For some reason my pain has been completely out of control. Judy, my palliative care nurse was able to get Dr. Giannini to write for the IV Benadryl. As I've said before, the IV Benadryl helps make the dilaudid more effective and last longer. I was getting IV Benadryl with the IV antibiotics, but since I won't be getting any more IV antibiotics, I needed it to help with my pain. It took many days to try to arrange it. First, for some reason it was difficult to get the order to professional home care. They faxed it multiple times, but for some reason, the pharmacy didn't get it. Then, it was a task to get it and have it delivered. I was in such severe pain that I was crying. I couldn't sleep as I was woken up by the pain shooting through my body. Each breath is pain staking. Even the pain medication doesn't touch the pain. I worry that I'm becoming dependent and that is why it is growing less and less effective, but the pain is getting so much worse. I know that soon we will have to change to either liquid or IV medication. It frustrates and scares me.
I had another episode of bleeding from the trach. I didn't do anything for it because I know there is nothing they can do. I know that I will not bleed to death and it looks worse than it is. You never get used to coughing up blood. My cough is worse as well which proves to me that once again the IV antibiotics didn't kill whatever it is in my lungs. My sats have been low as well. I am on 10L and can't really go any higher. I was in so much pain yesterday that I couldn't go to the movies with mom as we had planned. I know it hurts her to see me in pain.
I met with the hospice team on Thursday. They would like me to meet with Dr. Steingart before stopping the infusions. They talked with my pulmonology team, who of course said that they feel that my condition is not terminal. Even though my condition continues to decline, they refuse to see it. They then called Dr. Steingart whom I haven't seen since I got back from rehab, at which point I wasn't as sick. He hadn't known about my deterioration. Obviously, he was caught off guard since last I was doing better and the trach had helped my breathing. When they asked him about life expectancy if I came off Igg, he was unable to give a fixed amount of time. I know that it's okay because Dr. Giannini is the main person managing my care and she is able to sign the paperwork. The hospice team does want to make sure we have exhausted all options of treatment. I wish that we could find something that would help and make a difference. It is my one true wish. But I don't want to keep suffering. I worry this will keep me off hospice. I don't want to be on hospice if there is hope in something else, but I can't live like this either - with every breath being agonizing. I pray to breathe easy.
Another cyster (person with cystic fibrosis) died last night. Cystic fibrosis is a genetic disease that because of a gene mutation they have no chloride ion channels in their cells. This causes their mucous to be very sticky. They have a lot of lung problems. They get a lot of infections because their mucous is so thick and sticky that they can't cough it up. The many infections damage their lungs, somewhat the same as me. It is almost inevitable at some point they will require a double lung transplant as their lungs go into lung failure. For some, they get too sick to qualify for transplant. Others, for some reason, may not be candidates. In cases such as these, they die at a young age. Hannah was 20. It makes me so sad to think of all those that have died way before their time. I think of many others with different lung diseases that cause them to die young. It's just not fair. This is a world in which I wish we had more answers, more solutions. Medicine has come a long ways over the years. What used to be open heart surgery is now done laparoscopicly. Despite the advances, still many die too young. I grieve for all the mothers and fathers, sisters and brothers, family members and friends, boyfriends and husbands, who are taken from this world too young. They are such wonderful amazing people, whose lives are cut short. How I wish for me and those like me, there were ways to prevent this and give them the opportunity everyone deserves, the opportunity to live life.
Showing posts with label Death. Show all posts
Showing posts with label Death. Show all posts
Saturday, December 10, 2011
Tuesday, October 25, 2011
My Purpose in Life
Lately I have been filled with unbelievable love. Through this disease, I have lost many friends; however, though I have lost many people whom I thought were "friends", I have also gained many that I didn't know were friends. I have met some of the most amazing and courageous people. Some I have never persoanlly met, and we only know each other through the chats and postings on FB. Yet, these people have become to be just as important as my personal friends. I am truly blessed. At this difficult time, they have each reached out and made sure I knew how important I was and how blessed I was to have them in my life.
Gorwing up, my desired future occupation often changed; however, the one thing that never changed was my life goal. My one true life goal was to leave this world a better place than when I came into it. I wanted to have a positive influence on people. While I always imagined that I'd do this by doing something significant such as writing a book, discovering the cure for cancer through my own research, or becoming a motivational speaker, something that truly told my story, inner perseverance, and strength.
No one imagines that they will die before they even get to live. But for me, that is the case. I have not yet gotten to do any of the things I had imagined. Yet, I see all those affeted by my impending death and am shocked that I have had such a profound affect on so many. It amazes me. I pray that some day my complete story, through journal entries and other things, will be told. In some ways, this makes things more difficult because I realize the effect that I have had on others, the lives I have touched, and what it will mean when I am no longer here.
Jess went to Elms the other day to inform some of the faculty and staff of what was going on and that I was dying. It has been avazing, the responses I have received. but then I knew I had an impact on Elms. It saddens me greatly that while others in my graduation class are getting jobs, getting married, having children, ect., but I am doing none of these activites. I am dying. I have to leave this world before I really get a chance to make my mark. Yet I know that in my own way, I have left my mark, and that I won't be forgotten. The love that has come through from professors and other members of the Elms community as they reach out to share their love and support is amazing. Perhaps if I hadn't been who I was, and so instrumental in the community, my death would not be such a loss. But while it hurts others, in some ways, I am happy because it means I was important. Elms was my first true home. It was a place where I was valued for being me - Melissa Hauser. It was where I achieved my goal of going to college and becoming somebody, rather that the statistic that was expected of me. I did break through the system. I did succeed, and I didn't just survive. I thrived. I made and left my mark. It was at Elms that I became a person, a person I was proud of. Someone who was looked up to by others - a leader and a mentor. I was a role model in the classroom, and in the community as a whole. This is expressed through the numerous emails and well wishes that were expressed to me over the news they had received about my illness. There was a time in my life that I hated myself. I felt worth less than a peice of scum. Today, I am prouod at what I have achieved. I have risen above all that. Yet, it was all that, that made me who I am today. One of the hard things is the shock that some experience at this news. Throughout the time that they have known me, they have known me as a fighter, someone who has alrady overcome such odds, and in their eyes, this is just another road block. It is hard for them to realize that there are things tha cannot be overcome.
Gorwing up, my desired future occupation often changed; however, the one thing that never changed was my life goal. My one true life goal was to leave this world a better place than when I came into it. I wanted to have a positive influence on people. While I always imagined that I'd do this by doing something significant such as writing a book, discovering the cure for cancer through my own research, or becoming a motivational speaker, something that truly told my story, inner perseverance, and strength.
No one imagines that they will die before they even get to live. But for me, that is the case. I have not yet gotten to do any of the things I had imagined. Yet, I see all those affeted by my impending death and am shocked that I have had such a profound affect on so many. It amazes me. I pray that some day my complete story, through journal entries and other things, will be told. In some ways, this makes things more difficult because I realize the effect that I have had on others, the lives I have touched, and what it will mean when I am no longer here.
Jess went to Elms the other day to inform some of the faculty and staff of what was going on and that I was dying. It has been avazing, the responses I have received. but then I knew I had an impact on Elms. It saddens me greatly that while others in my graduation class are getting jobs, getting married, having children, ect., but I am doing none of these activites. I am dying. I have to leave this world before I really get a chance to make my mark. Yet I know that in my own way, I have left my mark, and that I won't be forgotten. The love that has come through from professors and other members of the Elms community as they reach out to share their love and support is amazing. Perhaps if I hadn't been who I was, and so instrumental in the community, my death would not be such a loss. But while it hurts others, in some ways, I am happy because it means I was important. Elms was my first true home. It was a place where I was valued for being me - Melissa Hauser. It was where I achieved my goal of going to college and becoming somebody, rather that the statistic that was expected of me. I did break through the system. I did succeed, and I didn't just survive. I thrived. I made and left my mark. It was at Elms that I became a person, a person I was proud of. Someone who was looked up to by others - a leader and a mentor. I was a role model in the classroom, and in the community as a whole. This is expressed through the numerous emails and well wishes that were expressed to me over the news they had received about my illness. There was a time in my life that I hated myself. I felt worth less than a peice of scum. Today, I am prouod at what I have achieved. I have risen above all that. Yet, it was all that, that made me who I am today. One of the hard things is the shock that some experience at this news. Throughout the time that they have known me, they have known me as a fighter, someone who has alrady overcome such odds, and in their eyes, this is just another road block. It is hard for them to realize that there are things tha cannot be overcome.
Sunday, October 16, 2011
Support
For the most part, people have been supportive. A few, however, have not. One such person is one of my close friends, John. Through all of this, I am trying to be compassionate and sensitive to the needs of others. My mom and other people have told me that this is not necessary, that the only person I have to worry about and take care of is myself. But this is not my nature. I am a protector and I take care of others. It’s what I do. It’s who I am. When I tell people, I try to do so as gently and as easily as possible. I know it hurts. I know they’re scared and don’t want me to die, but the fact of the matter is that I am dying and no one can stop this. No one has control over it. Right now, I need people to be there for me and be supportive of me. I need them to put aside their feelings and support mine.
This especially goes for John. We are lung twins. We were introduced by Alysse, who may not do or understand a lot, but we can owe our friendship to her. When she told me her friend, like me, had cvid, I didn’t believe it. CVID is so rare. It seemed highly doubtful that she had a friend in the area who also had CVID, got infusions, saw the same doctors, and had lung issues. It was nearly too good to be true; but it was true, and from there, our friendship grew.
He was the only one that got it when I talked about how much it sucked to be in my 20’s and dealing with this. Like me, he wore a high liter flow of oxygen. He knew what it was like to have to gauge the distance you could travel by how much o2 you had. If I made plans with someone (suppose we went to a movie), and then they wanted to go out to lunch after, but the lunch was not part of the original plans, I couldn’t go because I hadn’t factored that into my o2 usage. We talked about what it was like to be young and unable to work, or go to school. How much it sucked to be o2 dependent. We talked of our hopes of new lungs and running, riding bikes, just breathing easy. He urged me to go to see his doctor at Mass General, head of lung transplant.
Though John has lung issues that present themselves in a similar way as mind do, they are due to a different cause. He has been going through the process of trying to get on the transplant list for new lungs for almost a year. He has had numerous tests, but unfortunately due to the complex nature of the cvid and his lung problems, it is taking them awhile to list him. Each time it seems as if they will tell him yes, and list him, it is postponed, and he is forced to undergo yet another test. This has been very trying for him physically and emotionally. While I was in rehab for my trach, he was in rehab in Boston to recover from getting pneumonia, which he got as a result of a lung biopsy, one of the tests necessary to be put on the transplant list. I worried about telling him about the DNR because I knew it would hit him hard. I am one of the closest friends he has. I get it where others don’t. Most people with cvid don’t have the extent of lung damage that we do. Most people do well with Igg and get few infections after that. But this wasn’t the case for us. Though our lung issues differed greatly – his were a result of venous malformations and mine unknown origin, we both know what it is like to struggle so severely. He hated to see the little support I got from my family, or the neglect I got from my doctors. He wished for me to go to Baystate and Mass General where there are better doctors. It was only when it came to me needing a trach did his friendship falter. He wanted me to get another opinion, go to Mass General, not get the trach. But I already knew that the doctors at Mass General didn’t have any answers. They had specifically looked at me and told me they couldn’t find the reason, they didn’t know why my lungs were so bad. I was not a candidate for transplant. My body was too weak; it would never survive. No, the doctors at Mass General probably would not have put in a trach, but they wouldn’t have had answers other than to say we don’t know why you are as sick as you are. They probably would’ve thrown psycho babble, mumbo jumbo and not solved a thing. At least the trach gave me a chance. I knew that telling him this would hit too close to home because he knows that if he isn’t listed he too, will be facing this process. Without him saying it, I know it scares him. But I did not expect the fierceness of his rejection.
Everyone deals with death and grieving differently. When I told John, he was angry. Though I understand he wasn’t necessarily angry at me, his anger seemed directed at me. As if, how could I allow this to happen. You don’t need to do this. You don’t need to give up” he said. “You need to get to a better hospital in Boston and fight for your life. Get PT and push yourself. Be in pain and let the pain remind you that you are alive” He says, “I know it’s lonely. I know it’s hard. I know it sucks. But life’s a bitch, get a helmet.” “Get a psychiatrist. You have every right to feel sad and want to quit, but you are much stronger than that. You don’t need to do this.” And no words cut me more deeply. Because this isn’t’ a choice. I am not giving up. Honestly, I don’t know anyone who has fought harder against this disease. All those years of pain. I saw specialist after specialist. Went from Boston to New York City. No one had answers. No one had suggestions. All they had were more questions. I fought when I had no one by my side. I got myself to specialists. Made appointments for myself. Advocated for myself. It was lonely all those times in hospitals by myself. Times that my family wasn’t supportive. I had no friends. And though there were moments, I wanted to give up. I didn’t. I fought. I fought and I fought and I fought. I held my head up high and said nothing will stop me. I’m a survivor and I will prevail. This is not depression. I’ve been depressed. Depressed is when the world is black and you want to curl up in a ball In the corner of the room and sleep until it is over. I do not wish to avoid this, but rather want to embrace it, head on. I am sad, yes, but not depressed. I am sad at the people I must say good-bye to. Sad at the people I must leave behind. Things are not bleak and dreary as the world is often described when you are depressed, but bright and vibrant. It is so many colors come together in beauty. I am not choosing this but it is inevitable. It is my moment.
When I talked to Kathy about his, she said, “But they don’t’ have a diagnosis yet.” “They don’t have an organism” Sometimes in medicine, they don’t know “why”. Medicine doesn’t have all the answers. It cannot fix all things. If it is my time to go, I will go. I am not giving up. I am still doing therapy, taking treatments, doing my meds. But it is a losing fight. There is nothing I can do but put it in God’s hands and let His will to be done. It angers me to think someone could say I’m giving up or that I haven’t fought hard enough. Name me one person that has fought harder.
There comes a point at which it’s about quality not just quantity. I didn’t have a quality of life. My life sucks. My lungs aren’t getting better. Without a transplant or something of that nature, I never will have a quality of life. Even if my lungs didn’t get worse; even if they only remained the same, I still would never run, ride a bike, or even walk to the end of the driveway. I would never go anywhere without oxygen & just breathe easy. I do not remember what it is like not to struggle for every single breath, a time when breathing was an unconscious thing I did without thinking about it. I have a trach. I am alive, but I don’t have a quality of life. I have never turned in fear or cowered in the face of pain. I have faced every aspect of this disease head on with dignity. I have held my head up proud and will continue to do so. I have done more than nearly anyone else. John and I discussed it. We discussed that should someone come to us and say we needed a trach, we would say no, and let God’s will be done. But in the end, I didn’t do that. I agreed because I wasn’t ready. I needed more time, and I held the hope that I would get better. I didn’t cower in pain and fear when I went to rehab. I stood there boldly and strong facing the pain and I relearned how to walk, how to talk, how to eat, and how to breathe. I relearned practically everything I had learned through childhood as the trach changed my entire life. Not once did I give up. Not once did I say I can’t or it’s too much. I had my moments, but mostly, I faced each day with determination to get my life back, and to have it on my terms not my diseases. But I can not beat this one. It is not my family holding me back from seeing other doctors and specialists. If I truly wanted to get there, I would. I have gotten places myself many times before without any support. No one can stand in my way if I determine I want something and it’s what is right for me. But everyone has a life and this is my life. It has come that I need to be vented. The doctors haven’t said this, but I know it to be true. I don’t want that. I know I am dying. I refuse to spend the time I have going from doctor to doctor or procedure to procedure to be poked, prodded, and endure pain with no increase in quality of life. No answers, no better options. This is about ME and MY quality of life. I have already been given more time than I was supposed to have. Had it not been for the trach, I would be dead by now. Maybe for some that would be easier. Maybe the trach gave them a false sense of security that I was going to beat this, defy the odds, get better. But we knew it wasn’t a cure. It was a chance. It was a fight of time. I was not ready. It has given me time with my family and friends. Time is so precious. It is something that once lost can’t be gotten back. I did not choose this; however, through this all, I have held my head up high and I will through this too. This is not a choice. I am making, except I am choosing to say no to treatment. However, this treatment won’t cure me, but it will only prolong my suffering. To be realistic, if it is not this infection, it will be the next, or maybe the one after that. But the truth is I am dying and nothing can be done to prevent it. I will embrace death as I have embraced life – head on with my head held up high.
This especially goes for John. We are lung twins. We were introduced by Alysse, who may not do or understand a lot, but we can owe our friendship to her. When she told me her friend, like me, had cvid, I didn’t believe it. CVID is so rare. It seemed highly doubtful that she had a friend in the area who also had CVID, got infusions, saw the same doctors, and had lung issues. It was nearly too good to be true; but it was true, and from there, our friendship grew.
He was the only one that got it when I talked about how much it sucked to be in my 20’s and dealing with this. Like me, he wore a high liter flow of oxygen. He knew what it was like to have to gauge the distance you could travel by how much o2 you had. If I made plans with someone (suppose we went to a movie), and then they wanted to go out to lunch after, but the lunch was not part of the original plans, I couldn’t go because I hadn’t factored that into my o2 usage. We talked about what it was like to be young and unable to work, or go to school. How much it sucked to be o2 dependent. We talked of our hopes of new lungs and running, riding bikes, just breathing easy. He urged me to go to see his doctor at Mass General, head of lung transplant.
Though John has lung issues that present themselves in a similar way as mind do, they are due to a different cause. He has been going through the process of trying to get on the transplant list for new lungs for almost a year. He has had numerous tests, but unfortunately due to the complex nature of the cvid and his lung problems, it is taking them awhile to list him. Each time it seems as if they will tell him yes, and list him, it is postponed, and he is forced to undergo yet another test. This has been very trying for him physically and emotionally. While I was in rehab for my trach, he was in rehab in Boston to recover from getting pneumonia, which he got as a result of a lung biopsy, one of the tests necessary to be put on the transplant list. I worried about telling him about the DNR because I knew it would hit him hard. I am one of the closest friends he has. I get it where others don’t. Most people with cvid don’t have the extent of lung damage that we do. Most people do well with Igg and get few infections after that. But this wasn’t the case for us. Though our lung issues differed greatly – his were a result of venous malformations and mine unknown origin, we both know what it is like to struggle so severely. He hated to see the little support I got from my family, or the neglect I got from my doctors. He wished for me to go to Baystate and Mass General where there are better doctors. It was only when it came to me needing a trach did his friendship falter. He wanted me to get another opinion, go to Mass General, not get the trach. But I already knew that the doctors at Mass General didn’t have any answers. They had specifically looked at me and told me they couldn’t find the reason, they didn’t know why my lungs were so bad. I was not a candidate for transplant. My body was too weak; it would never survive. No, the doctors at Mass General probably would not have put in a trach, but they wouldn’t have had answers other than to say we don’t know why you are as sick as you are. They probably would’ve thrown psycho babble, mumbo jumbo and not solved a thing. At least the trach gave me a chance. I knew that telling him this would hit too close to home because he knows that if he isn’t listed he too, will be facing this process. Without him saying it, I know it scares him. But I did not expect the fierceness of his rejection.
Everyone deals with death and grieving differently. When I told John, he was angry. Though I understand he wasn’t necessarily angry at me, his anger seemed directed at me. As if, how could I allow this to happen. You don’t need to do this. You don’t need to give up” he said. “You need to get to a better hospital in Boston and fight for your life. Get PT and push yourself. Be in pain and let the pain remind you that you are alive” He says, “I know it’s lonely. I know it’s hard. I know it sucks. But life’s a bitch, get a helmet.” “Get a psychiatrist. You have every right to feel sad and want to quit, but you are much stronger than that. You don’t need to do this.” And no words cut me more deeply. Because this isn’t’ a choice. I am not giving up. Honestly, I don’t know anyone who has fought harder against this disease. All those years of pain. I saw specialist after specialist. Went from Boston to New York City. No one had answers. No one had suggestions. All they had were more questions. I fought when I had no one by my side. I got myself to specialists. Made appointments for myself. Advocated for myself. It was lonely all those times in hospitals by myself. Times that my family wasn’t supportive. I had no friends. And though there were moments, I wanted to give up. I didn’t. I fought. I fought and I fought and I fought. I held my head up high and said nothing will stop me. I’m a survivor and I will prevail. This is not depression. I’ve been depressed. Depressed is when the world is black and you want to curl up in a ball In the corner of the room and sleep until it is over. I do not wish to avoid this, but rather want to embrace it, head on. I am sad, yes, but not depressed. I am sad at the people I must say good-bye to. Sad at the people I must leave behind. Things are not bleak and dreary as the world is often described when you are depressed, but bright and vibrant. It is so many colors come together in beauty. I am not choosing this but it is inevitable. It is my moment.
When I talked to Kathy about his, she said, “But they don’t’ have a diagnosis yet.” “They don’t have an organism” Sometimes in medicine, they don’t know “why”. Medicine doesn’t have all the answers. It cannot fix all things. If it is my time to go, I will go. I am not giving up. I am still doing therapy, taking treatments, doing my meds. But it is a losing fight. There is nothing I can do but put it in God’s hands and let His will to be done. It angers me to think someone could say I’m giving up or that I haven’t fought hard enough. Name me one person that has fought harder.
There comes a point at which it’s about quality not just quantity. I didn’t have a quality of life. My life sucks. My lungs aren’t getting better. Without a transplant or something of that nature, I never will have a quality of life. Even if my lungs didn’t get worse; even if they only remained the same, I still would never run, ride a bike, or even walk to the end of the driveway. I would never go anywhere without oxygen & just breathe easy. I do not remember what it is like not to struggle for every single breath, a time when breathing was an unconscious thing I did without thinking about it. I have a trach. I am alive, but I don’t have a quality of life. I have never turned in fear or cowered in the face of pain. I have faced every aspect of this disease head on with dignity. I have held my head up proud and will continue to do so. I have done more than nearly anyone else. John and I discussed it. We discussed that should someone come to us and say we needed a trach, we would say no, and let God’s will be done. But in the end, I didn’t do that. I agreed because I wasn’t ready. I needed more time, and I held the hope that I would get better. I didn’t cower in pain and fear when I went to rehab. I stood there boldly and strong facing the pain and I relearned how to walk, how to talk, how to eat, and how to breathe. I relearned practically everything I had learned through childhood as the trach changed my entire life. Not once did I give up. Not once did I say I can’t or it’s too much. I had my moments, but mostly, I faced each day with determination to get my life back, and to have it on my terms not my diseases. But I can not beat this one. It is not my family holding me back from seeing other doctors and specialists. If I truly wanted to get there, I would. I have gotten places myself many times before without any support. No one can stand in my way if I determine I want something and it’s what is right for me. But everyone has a life and this is my life. It has come that I need to be vented. The doctors haven’t said this, but I know it to be true. I don’t want that. I know I am dying. I refuse to spend the time I have going from doctor to doctor or procedure to procedure to be poked, prodded, and endure pain with no increase in quality of life. No answers, no better options. This is about ME and MY quality of life. I have already been given more time than I was supposed to have. Had it not been for the trach, I would be dead by now. Maybe for some that would be easier. Maybe the trach gave them a false sense of security that I was going to beat this, defy the odds, get better. But we knew it wasn’t a cure. It was a chance. It was a fight of time. I was not ready. It has given me time with my family and friends. Time is so precious. It is something that once lost can’t be gotten back. I did not choose this; however, through this all, I have held my head up high and I will through this too. This is not a choice. I am making, except I am choosing to say no to treatment. However, this treatment won’t cure me, but it will only prolong my suffering. To be realistic, if it is not this infection, it will be the next, or maybe the one after that. But the truth is I am dying and nothing can be done to prevent it. I will embrace death as I have embraced life – head on with my head held up high.
Thursday, October 13, 2011
DNR
I signed the DNR today. Probably one of the hardest things I've ever had to do, but it needed to be done. With as sick as I've been, I've been so afraid I'd end up in the hospital and either be too sick to talk or have the doctor not honor my wishes. I wasn't sure if I ended up in the ER and said I wanted a DNR if they'd listen.
I've had this infection for 6 weeks now. It's not getting better. If anything my cough is worse. I'm now bringing up blood in the trach. I don't know if it's because my lungs are irritated from all the coughing or if there is a granuloma or something, but I'm back to bleeding like I did at first. I cough, and it's like Freddy Crooger - blood everywhere. Disgusting. They are trying yet another antibiotic - zyvox. They don't really have any meds stronger than this. If this doesn't work, I don't know if they have anything else. If they do, I'm not sure I want it. We are changing the trach on Thursday. The thinking is that maybe if the infection has colonized in the trach, changing it will get rid of it. My breathing has been so bad. My lungs hurt so badly; the pain is immense. I've been waking up dizzy and with a massive migraine the past several nights. I know I'm not getting enough o2 while I sleep. Before the trach, I was using bipap at night. We knew I'd probably need to be vented while I slept at some point, though I never thought it'd be this soon. Of course, then I have to decide if this is what I want. I've realized in the past year or so, the reason I go to the hospital is that I get so I'm struggling so much that I start to get tired. The effort of breathing becomes too much. It hurts so much from breathing and struggling that I go to the hospital to get relief. That is the pain I am afraid of. The pain of struggling to breathe. To be suffocating and be terrified and not able to do anything about it, but if the pain is taken care of and out of the picture, then going to the hospital becomes unnecessary. I am trying so hard to stay out of the hospital. I have goals. I want to go to Disney. I want to make it to Christmas. I don't see the point in going to the hospital. They can do the IV antibiotics at home. If they put me in the hospital, I want them to guarantee, I'll come out. The only reason for going to the hospital is so they can vent me, but if I were to go on a vent, can they guarantee I'll come off? Now I know they can't guarantee this 100% with anyone, but baring something unexpected happening, they do so with at least a 97% certainly they'll leave. At this point, I don't know if they can even give me a 50% certainty.
The hardest thing about the DNR is I didn't want it to seem like I was giving up. I'm not. Not by any means. But if dying is the goal, the end result, as it is with hospice, then what would be the point of coming back. If it came to the point that I need CPR, I am already clinically dead. I don't want to be brought back. In addition, for most people, CPR has it's consequences. They may bring you back, but for what? You are not the same. Your quality of life is not the same. If they could bring me back and I would be better than I am today, then it would be okay. But even if they were to bring me back to how I am today, I don't want it. To me, this isn't a quality of life and at some point It does have to be a quality not quantity. Right now I cannot live life and enjoy it. I am grateful for the trach and the time it has given me with my family and friends, but it isn't a quality of life. I could not imagine living like this for 5-10 years. The DNR was a difficult decision, but the right one. Now that it is done I'm much more at peace.
I've had this infection for 6 weeks now. It's not getting better. If anything my cough is worse. I'm now bringing up blood in the trach. I don't know if it's because my lungs are irritated from all the coughing or if there is a granuloma or something, but I'm back to bleeding like I did at first. I cough, and it's like Freddy Crooger - blood everywhere. Disgusting. They are trying yet another antibiotic - zyvox. They don't really have any meds stronger than this. If this doesn't work, I don't know if they have anything else. If they do, I'm not sure I want it. We are changing the trach on Thursday. The thinking is that maybe if the infection has colonized in the trach, changing it will get rid of it. My breathing has been so bad. My lungs hurt so badly; the pain is immense. I've been waking up dizzy and with a massive migraine the past several nights. I know I'm not getting enough o2 while I sleep. Before the trach, I was using bipap at night. We knew I'd probably need to be vented while I slept at some point, though I never thought it'd be this soon. Of course, then I have to decide if this is what I want. I've realized in the past year or so, the reason I go to the hospital is that I get so I'm struggling so much that I start to get tired. The effort of breathing becomes too much. It hurts so much from breathing and struggling that I go to the hospital to get relief. That is the pain I am afraid of. The pain of struggling to breathe. To be suffocating and be terrified and not able to do anything about it, but if the pain is taken care of and out of the picture, then going to the hospital becomes unnecessary. I am trying so hard to stay out of the hospital. I have goals. I want to go to Disney. I want to make it to Christmas. I don't see the point in going to the hospital. They can do the IV antibiotics at home. If they put me in the hospital, I want them to guarantee, I'll come out. The only reason for going to the hospital is so they can vent me, but if I were to go on a vent, can they guarantee I'll come off? Now I know they can't guarantee this 100% with anyone, but baring something unexpected happening, they do so with at least a 97% certainly they'll leave. At this point, I don't know if they can even give me a 50% certainty.
The hardest thing about the DNR is I didn't want it to seem like I was giving up. I'm not. Not by any means. But if dying is the goal, the end result, as it is with hospice, then what would be the point of coming back. If it came to the point that I need CPR, I am already clinically dead. I don't want to be brought back. In addition, for most people, CPR has it's consequences. They may bring you back, but for what? You are not the same. Your quality of life is not the same. If they could bring me back and I would be better than I am today, then it would be okay. But even if they were to bring me back to how I am today, I don't want it. To me, this isn't a quality of life and at some point It does have to be a quality not quantity. Right now I cannot live life and enjoy it. I am grateful for the trach and the time it has given me with my family and friends, but it isn't a quality of life. I could not imagine living like this for 5-10 years. The DNR was a difficult decision, but the right one. Now that it is done I'm much more at peace.
Monday, October 10, 2011
The Love of a Sister
Some days I think about this and how utterly unfair it is. It seems that lately all I do is cry. The social worker from the VNA made an interesting statement today. She said that I am grieving. this is so true. I think in many ways this is harder than saying good-bye to a loved one that is dying, or has died. I am not saying good-bye to one person, but to everyone I know. I am saying good-bye to all the people that have been in my life.
My goal in life has always been to leave this world a slightly better place than when I came into it. I have not done even a fraction of the thing I always dreamed of. I guess I always thought there would be time. Though I never got to do many of the things I thought I would, I can't deny that I haven't influenced people. I know so many people that care. It just tears me apart. I think about certain things, things with my brothers and sister. Dinner with them and how we all sit and laugh. We tease each other and joke. It hurts me to think that some day, they will be together, but I won't be there. Every time we're together, I wonder, in 6 months will I still be here to do this? A year? I know their life will go on. I know it will continue because that's what life does, it goes on. But it will go on without me. I won't be there to join in the jokes. It hurts so much to leave them, but I haven't really been given a choice. All my life I've protected them and been there for them. But I can't make this better. I can't make it hurt less. I can't stop it. I can't protect them. This is going to happen whether I want it to or not, and that hurts. They are so young, all so young. I shouldn't be the one that has to go. I think how I won't get to see them grow up, get married, have kids. I won't get to see Brenndan graduate. It's like I'm checking out at the middle of the story where I won't know how it ends. It's not fair.
My goal in life has always been to leave this world a slightly better place than when I came into it. I have not done even a fraction of the thing I always dreamed of. I guess I always thought there would be time. Though I never got to do many of the things I thought I would, I can't deny that I haven't influenced people. I know so many people that care. It just tears me apart. I think about certain things, things with my brothers and sister. Dinner with them and how we all sit and laugh. We tease each other and joke. It hurts me to think that some day, they will be together, but I won't be there. Every time we're together, I wonder, in 6 months will I still be here to do this? A year? I know their life will go on. I know it will continue because that's what life does, it goes on. But it will go on without me. I won't be there to join in the jokes. It hurts so much to leave them, but I haven't really been given a choice. All my life I've protected them and been there for them. But I can't make this better. I can't make it hurt less. I can't stop it. I can't protect them. This is going to happen whether I want it to or not, and that hurts. They are so young, all so young. I shouldn't be the one that has to go. I think how I won't get to see them grow up, get married, have kids. I won't get to see Brenndan graduate. It's like I'm checking out at the middle of the story where I won't know how it ends. It's not fair.
Final Gifts
In some ways, I think it is very special to be allowed to walk this journey. When a child is born, they are not conceived and then immediately born. They have nine months to prepare. They grow and get ready for their journey into this world. Being born is hard work. Similarly, dying is also a process, a journey. Some people may die instantly in an accident, but this is not the norm. For most, dying takes time to prepare; it is a lot of work. I feel that is what I am doing now. I am getting ready for my trip. I am training and preparing myself to leave this world and enter another. When I sleep, I am not just sleeping; I am preparing. There are things I need to do so that I am ready. Truly, this is hard work. I have invited others to share in this journey with me. It is a gift that I am offering. They can either take it or leave it. While they may have a choice as to whether to travel this journey with me, I do not.
Saturday, October 8, 2011
Today mom told Sher and Brenndan about what was going on and that I am now in palliative care, and what that all means. This becomes more real every day. I have been trying so hard to make this easier for my friends and family. I feel like I need to/want to protect them, protect them from the harshness of all of this. It is never going to be easy, but I want it to be as easy as possible because though it may make it harder for me at first, I'm the one that gets to go. I'm the one that will be in a better place, free of pain. It has been so hard. I have struggled to breathe for so long that I don't even remember what it is like to breathe easy. I have carried oxygen so long that I don't know what it is like to go without. Yet in the near future I will be free - free of the confines of this body and the limitations it presents. My pain will be ending, but theirs will just have begun.
When I think of not being here, it makes me sad. The palliative case worker that came today mentioned that I am grieving. I hadn't thought like that. I acknowledge that those around me are grieving, but you don't really consider that the person dying also must grieve. Sometimes the loss I feel hurts so much, to know that I will probably not see any of my siblings get married and have families. I will not know my nieces and nephews. I may not see Brenndan graduate from high school or college. I won't get to see what remarkable men they will grow up to be. I see them now, and I am so proud of them. I am so proud of my sister and what she has become. They are all so young, especially Brenndan. It isn't fair. He's only 15. He shouldn't have to deal with his sister dying. He is only a baby; so young. He has never really gotten to know me not being sick. For all he remembers, I was sick. I wasn't able to be there as much as I wanted when he was young. We always thought there would be more time. And now we're out of time. This just shouldn't be happening. He should not be having to face this so young. He lost Poppy and now he'll lose me. The thing that frustrates me the most is that there isn't anything I can do about it. I can't stop it from happening. I can't make it better. I can only be here now and make memories with him now. It's just so unfair. Each of them are so good. They don't deserve this. My mom, she doesn't either. She's such a good mom. She isn't perfect. She's made mistakes. But she's been there for the important things. She's done the best she could, and that was a really good job. No parent should have to bury their child. All of this just breaks my heart. So I guess the hospice worker has it right. I am grieving. I am grieving the loss of those I love and the loss they will experience. I feel anger that I can't change things, that I can't stop this from happening or stop the hurt they will feel. I can't make ti better.
When I think of not being here, it makes me sad. The palliative case worker that came today mentioned that I am grieving. I hadn't thought like that. I acknowledge that those around me are grieving, but you don't really consider that the person dying also must grieve. Sometimes the loss I feel hurts so much, to know that I will probably not see any of my siblings get married and have families. I will not know my nieces and nephews. I may not see Brenndan graduate from high school or college. I won't get to see what remarkable men they will grow up to be. I see them now, and I am so proud of them. I am so proud of my sister and what she has become. They are all so young, especially Brenndan. It isn't fair. He's only 15. He shouldn't have to deal with his sister dying. He is only a baby; so young. He has never really gotten to know me not being sick. For all he remembers, I was sick. I wasn't able to be there as much as I wanted when he was young. We always thought there would be more time. And now we're out of time. This just shouldn't be happening. He should not be having to face this so young. He lost Poppy and now he'll lose me. The thing that frustrates me the most is that there isn't anything I can do about it. I can't stop it from happening. I can't make it better. I can only be here now and make memories with him now. It's just so unfair. Each of them are so good. They don't deserve this. My mom, she doesn't either. She's such a good mom. She isn't perfect. She's made mistakes. But she's been there for the important things. She's done the best she could, and that was a really good job. No parent should have to bury their child. All of this just breaks my heart. So I guess the hospice worker has it right. I am grieving. I am grieving the loss of those I love and the loss they will experience. I feel anger that I can't change things, that I can't stop this from happening or stop the hurt they will feel. I can't make ti better.
Friday, October 7, 2011
De Nile.. Not just a river in Egypt
Some days, I think one of the hardest things about this is other people's denial. I know that this is hard for those that care about me. No one wants to lose someone close, that they love, especially when that person is so young and hypothetically should have the rest of their life left. But this is happening. Being in denial doesn't help, and isn't going to change anything. They don't want to face reality because it hurts. They desperately want to believe that I'll get better. I understand this, but not wanting it not to be true, doesn't change anything.
There was a bit of a scare Thursday night. We lost power, causing the oxygen to turn off. When this happens, it must be reset for it to turn on and work again. Thankfully Prakhar woke up and noticed it wasn't running. He went downstairs and woke dad up. Although neither of them could figure it out, dad had the idea to wake me so that I could fix it. When we talked about it, dad told me that he was afraid to wake me because he was scared that I would already be dead when he went to touch me to wake me up. He was so relieved when I awoke. Of course, I didn't really think anything of it or the effect it had because to me, it wasn't a big deal. It was the middle of the night, and I was asleep. My o2 sats did drop, though I don't think I was long without it; however, I didn't really consider that had I not received oxygen for an extended period, I could die.
I don't ever really think about the effect this has on dad, me being so reliant on oxygen to survive, that is. Most of the time he seems clueless and doesn't get it. Often it frustrates me and makes me angry. When I had the trach put in, he visited twice, and he never called to see if I was okay. This infuriated me. Finally, I came to the conclusion that he just couldn't acknowledge it because then it would be real, and he couldn't handle that. He needed to be in denial. Today he talked to me about advertising for tutoring to get more clients. It's as if he doesn't get how sick I am, or that I am getting sicker. I couldn't possibly take on more students in my current state. I haven't told him about palliative care and have no idea how to do so. I know that at first he won't understand it. He'll probably deny it and pretend that nothing is wrong, but at the same time, I can't not tell him. He needs to know. I especially fear his reaction. I know how upset he was before the trach, and the idea that I would become an invalid. He doesn't want to take care of me. Not that he takes care of me, because he doesn't provide anything for my care. Yet, that is exactly what I have become, an invalid, and I fear he will insist on me finding some other place to live.
Kathy is another person in deep denial. I told her today that I had been placed in palliative care and discussed the future, or at least tried to, but she is insistent that I won't deteriorate, that I will get better. She doesn't want me using the wheelchair because she doesn't want me to use it as a crutch and get used to using the wheelchair instead of walking. She wants me up and walking, which is fine and understandable, but right now I can't get around without the wheelchair. I can walk short distances with the walker, but tire easily and get short of breath. She is of the belief that if I just try hard enough, I'll get better. I just have to be dedicated, put in the hard work, and exercise. But dedication is not going to change things. I understand that she wants to see me get better. She cares for me. I'm young and no one wants to see me get sicker and die. Even my doctors have a hard time with it. They aren't going to give me a time frame. Some don't acknowledge where this is leading. They don't want to give a time or declare me terminal, partly because of my age. It would be easier if I was old and had lived my life. Plus this disease is not concrete. I don't have cancer where it is fairly easy to say I have "x" long to live. This is ambiguous. Kathy is in this trap. Not acknowledging it, however, and being in denial only makes this process harder. Partly because when she insists I will get better, I have a harder time accepting things. I try to convince myself I'll get better. In addition, I fear that when I do go into hospice, she'll be upset with me. She'll view it as me giving up, in essence killing myself. This is not so. I've fought long and hard, but I am becoming very tired. Honestly, this is not a life. I am just existing. I am limited by the things I can do. I am basically housebound. This is not the life I wish to lead. If I got better, than yes. But I know that the chance of this happening isn't too great. I can't imagine living like this for another 20 years. Heck, I can't imagine even 5.
I am afraid. I am afraid that Kathy will be upset. I worry about my brothers and sister and the effect this will have on them, and what it will be like for them to lose their sister. It's not fair. They shouldn't have to go through this. They haven't known me to be healthy in years. Dennis may only barely remember me healthy. Brenndan doesn't remember a time when I was healthy at all. It makes me sad and angry that so much has been taken from them. They haven't gotten to live a normal life.
Everyone else in my family is also in denial. They don't acknowledge how sick I am. To some extent, it is because they are conditioned. In their minds, this is what I do; I get sick. I may end up in the hospital, but I always get better. They are desensitized. When my uncle came to help build the ramp, he expected it to be short-term. I wasn't really going to need it for long; maybe a couple of weeks, a month or two at most. When I discussed going to the track to go around in the wheelchair, my aunt said I would get out of the chair and run. I haven't been able to run in years. I haven't been able to go places like the mall for at least a year because of the amount of walking involved and the fact that I just couldn't do it. None of my aunts, uncles, or cousins have called to see how I am doing. They don't realize the seriousness of this. My aunt lives 30 minutes away. She drives by my house to get to church every week. Not once, has she stopped to check in and see how I am doing. They are all very selfish and self-centered. I've been fighting for my life, had a trach put in so that I can breathe, but they can't bother to take the time to see how I am doing. It angers me. I also feel sad because at some point, it will be too late, and they will have missed this opportunity, time to spend with me.
I think one thing that is the most frustrating is those that don't acknowledge this at all. They tell me, "Don't think like that... That's not going to happen... You don't need palliative care... You'll get better... You just have to want it... You have to try..." The best yet is, "You just need to pray and ask God to heal you... Obviously you haven't believed enough... Give your life to Him and He'll heal you... He heals all who ask..." This is not due to a lack of faith. I do pray, but prayer alone cannot fix all things. Not everyone is meant to be cured. I do try; I am motivated. If I get better, I will be the happiest person, but there are some things you cannot fix. I do have faith - a strong faith, but some things aren't meant to be. This is nothing I did or am doing. I know this is hard. It's certainly not easy for me. I pray that others can see the way things truly are, leave their denial, before it is too late.
There was a bit of a scare Thursday night. We lost power, causing the oxygen to turn off. When this happens, it must be reset for it to turn on and work again. Thankfully Prakhar woke up and noticed it wasn't running. He went downstairs and woke dad up. Although neither of them could figure it out, dad had the idea to wake me so that I could fix it. When we talked about it, dad told me that he was afraid to wake me because he was scared that I would already be dead when he went to touch me to wake me up. He was so relieved when I awoke. Of course, I didn't really think anything of it or the effect it had because to me, it wasn't a big deal. It was the middle of the night, and I was asleep. My o2 sats did drop, though I don't think I was long without it; however, I didn't really consider that had I not received oxygen for an extended period, I could die.
I don't ever really think about the effect this has on dad, me being so reliant on oxygen to survive, that is. Most of the time he seems clueless and doesn't get it. Often it frustrates me and makes me angry. When I had the trach put in, he visited twice, and he never called to see if I was okay. This infuriated me. Finally, I came to the conclusion that he just couldn't acknowledge it because then it would be real, and he couldn't handle that. He needed to be in denial. Today he talked to me about advertising for tutoring to get more clients. It's as if he doesn't get how sick I am, or that I am getting sicker. I couldn't possibly take on more students in my current state. I haven't told him about palliative care and have no idea how to do so. I know that at first he won't understand it. He'll probably deny it and pretend that nothing is wrong, but at the same time, I can't not tell him. He needs to know. I especially fear his reaction. I know how upset he was before the trach, and the idea that I would become an invalid. He doesn't want to take care of me. Not that he takes care of me, because he doesn't provide anything for my care. Yet, that is exactly what I have become, an invalid, and I fear he will insist on me finding some other place to live.
Kathy is another person in deep denial. I told her today that I had been placed in palliative care and discussed the future, or at least tried to, but she is insistent that I won't deteriorate, that I will get better. She doesn't want me using the wheelchair because she doesn't want me to use it as a crutch and get used to using the wheelchair instead of walking. She wants me up and walking, which is fine and understandable, but right now I can't get around without the wheelchair. I can walk short distances with the walker, but tire easily and get short of breath. She is of the belief that if I just try hard enough, I'll get better. I just have to be dedicated, put in the hard work, and exercise. But dedication is not going to change things. I understand that she wants to see me get better. She cares for me. I'm young and no one wants to see me get sicker and die. Even my doctors have a hard time with it. They aren't going to give me a time frame. Some don't acknowledge where this is leading. They don't want to give a time or declare me terminal, partly because of my age. It would be easier if I was old and had lived my life. Plus this disease is not concrete. I don't have cancer where it is fairly easy to say I have "x" long to live. This is ambiguous. Kathy is in this trap. Not acknowledging it, however, and being in denial only makes this process harder. Partly because when she insists I will get better, I have a harder time accepting things. I try to convince myself I'll get better. In addition, I fear that when I do go into hospice, she'll be upset with me. She'll view it as me giving up, in essence killing myself. This is not so. I've fought long and hard, but I am becoming very tired. Honestly, this is not a life. I am just existing. I am limited by the things I can do. I am basically housebound. This is not the life I wish to lead. If I got better, than yes. But I know that the chance of this happening isn't too great. I can't imagine living like this for another 20 years. Heck, I can't imagine even 5.
I am afraid. I am afraid that Kathy will be upset. I worry about my brothers and sister and the effect this will have on them, and what it will be like for them to lose their sister. It's not fair. They shouldn't have to go through this. They haven't known me to be healthy in years. Dennis may only barely remember me healthy. Brenndan doesn't remember a time when I was healthy at all. It makes me sad and angry that so much has been taken from them. They haven't gotten to live a normal life.
Everyone else in my family is also in denial. They don't acknowledge how sick I am. To some extent, it is because they are conditioned. In their minds, this is what I do; I get sick. I may end up in the hospital, but I always get better. They are desensitized. When my uncle came to help build the ramp, he expected it to be short-term. I wasn't really going to need it for long; maybe a couple of weeks, a month or two at most. When I discussed going to the track to go around in the wheelchair, my aunt said I would get out of the chair and run. I haven't been able to run in years. I haven't been able to go places like the mall for at least a year because of the amount of walking involved and the fact that I just couldn't do it. None of my aunts, uncles, or cousins have called to see how I am doing. They don't realize the seriousness of this. My aunt lives 30 minutes away. She drives by my house to get to church every week. Not once, has she stopped to check in and see how I am doing. They are all very selfish and self-centered. I've been fighting for my life, had a trach put in so that I can breathe, but they can't bother to take the time to see how I am doing. It angers me. I also feel sad because at some point, it will be too late, and they will have missed this opportunity, time to spend with me.
I think one thing that is the most frustrating is those that don't acknowledge this at all. They tell me, "Don't think like that... That's not going to happen... You don't need palliative care... You'll get better... You just have to want it... You have to try..." The best yet is, "You just need to pray and ask God to heal you... Obviously you haven't believed enough... Give your life to Him and He'll heal you... He heals all who ask..." This is not due to a lack of faith. I do pray, but prayer alone cannot fix all things. Not everyone is meant to be cured. I do try; I am motivated. If I get better, I will be the happiest person, but there are some things you cannot fix. I do have faith - a strong faith, but some things aren't meant to be. This is nothing I did or am doing. I know this is hard. It's certainly not easy for me. I pray that others can see the way things truly are, leave their denial, before it is too late.
Wednesday, September 28, 2011
I think one of the hardest things about this is telling people. Knowing that I am hurting them and knowing that it will only be harder and only get worse. I wish I could save them from the pain. I wish I could protect them, but I can't. Not telling them doesn't protect them or save them from hurt. It shortens the time they have with me. I feel I need to give them this time, this opportunity to spend with me and do things, make memories, before I'm no longer here. But it hurts me to hurt them, because I love them so much, and that will, never change. I will never stop loving them, even when I'm not here. I know that this time is a time that is all about me, but I need to make it be about them as well, because they are my support system, my life, and my love. My time here is short, I know that. I can already see it, though others may not. I try to deny it. I try to imagine that I will get better, that I will be able to move into my own apartment and live a life, but realistically, I know this isn't true. I am only able to lie to myself for small periods, and even then, I know it's not true. The periods I am able to deny reality get shorter and shorter. I am sick and I would never wish this existence on anyone. If I do anything one day, I then sleep for two days to make up for it. I sleep all the time. I try to deny the changes, but it's hard when it's right in your face. Denying it, won't help. It won't stop it from happening. It won't give me more time or change circumstances. The facts remain the same - I am dying. It sucks. It's not fair. I try to be patient with my friends and their needs. I know this isn't easy. I've been sick for many years. In some ways that fact makes it harder because people are used to me being sick. They are used to me being in the hospital, even in ICU and on respirators. I always get better. It desensitizes them. We've talked about my death. My close friends have listened when I talked of my fears that I was going to die before I was ready. But I don't really think any of us really wanted to believe these were anything more than fears. We didn't really think this day would come. But it has...
The one thing that really gets me choked up and cry is the idea of all those I love left behind. What it's going to be like when they get the word that I'm officially gone. All those years, that I attempted suicide, not once did I really think about it. I didn't consider death and what it really meant, but that is the difference between suicide and true death. Suicide is done out of anger. It is selfish, where all you're concerned about is yourself. It's a giving up. it's going in the corner, curing up in a ball, and dying. It's black. True death is the opposite. True death is white. It is selfless. It is not giving up or giving in. It is acceptance. I worry about my friends and what it will be like to them to lose a good friend, for some we're so close, we're like sisters. I worry about my siblings. Losing Poppy was devastating and hard, but this... I don't know... Parents shouldn't have to bury children. It hurts me just knowing the hurt they will feel. Yes, I know they'll move on. Life is for the living, and gradually, they'll move on because they'll have to. There is no choice. I know that gradually it'll hurt less, but the hurt will never completely go away. Someday we'll be reunited. Just as I know I'll see Poppy when I go to heaven, I'll be waiting for them.
The one thing that really gets me choked up and cry is the idea of all those I love left behind. What it's going to be like when they get the word that I'm officially gone. All those years, that I attempted suicide, not once did I really think about it. I didn't consider death and what it really meant, but that is the difference between suicide and true death. Suicide is done out of anger. It is selfish, where all you're concerned about is yourself. It's a giving up. it's going in the corner, curing up in a ball, and dying. It's black. True death is the opposite. True death is white. It is selfless. It is not giving up or giving in. It is acceptance. I worry about my friends and what it will be like to them to lose a good friend, for some we're so close, we're like sisters. I worry about my siblings. Losing Poppy was devastating and hard, but this... I don't know... Parents shouldn't have to bury children. It hurts me just knowing the hurt they will feel. Yes, I know they'll move on. Life is for the living, and gradually, they'll move on because they'll have to. There is no choice. I know that gradually it'll hurt less, but the hurt will never completely go away. Someday we'll be reunited. Just as I know I'll see Poppy when I go to heaven, I'll be waiting for them.
Saturday, August 13, 2011
Stages of Death and Dying - Not just for dying
Many people know about the stages of death and dying, the stages one must go through when they are dying. These stages were identified by Kubler-Ross and include: denial, anger, bargaining, depression, and acceptance. It is my belief that these stages are not limited to people who are dying. They affect anyone who experiences a major life change, especially when some form of loss is present.
Getting a trach was a major life changing event. No one "wants" a trach. It is not something that is done electively. It is done when there are no other options . At the same time, there is nothing that could adequately prepare a person for life with a trach.
My life has become defined as - before the trach, and after the trach. It is definitely something that is difficult to adjust to. Doctors make it seem as if you get a trach and everything is all better. You go back to your life. But that isn't how it works. You go into surgery with one life, and you come out with another, and just as with your previous life, you must relearn everything. The hardest thing though is that you must mourn the loss of your old life. I think if you had more time to adjust to it, it might be better. But they came in one day and said they wanted me to think about having a tracheotomy, then I agreed, and I was set up for surgery the next day. From the first it was mentioned to surgery was 3 days. I didn't have time to think or process. I was told, you need this if you want to live. Okay, and then it was done.
My life now is completely different. I do miss my previous life. I mourn the loss of it. I will never carelessly take a shower, not using certain methods to be sure to not end up drowning myself. I will not be able to swim and have to be exceedingly careful around water. I will always have to be extremely vigilant about trach care, always prepared for it to get clogged or fall out, ect. Yes, I can do many of the things I did before. I have a life. I am alive. But not in the same way as before the trach. My life will never be as it was before this. And like the stages of death and dying, I have to mourn the loss of my old life and accept this new one.
This hasn't been easy, and I know that this road isn't close to being over. I know there will be many challenges ahead. There are moments when I have hope and I am okay. I also have moments in which I'm not, that I don't want this life. I want my old life back. But that isn't possible. One thing I wish is that I had had a chance to appreciate my old life and do the some things for the last time. For instance, I would love to go for a swim. You don't fully understand what you're losing when you get the trach. You can't truly comprehend the changes n your life. And you can't appreciate certain things until you no longer have them. Sometimes I am angry, angry because "Why me? Why do I have to deal with this? I don't want to have to deal with this." You have to allow yourself that anger. But in the end, it doesn't matter why. All that matters is that you do and therefore, accept it and move on.
The period after the initial trach, when I was sent home, is what I would call the great depression. It was a period in which I was crushed by what I had expected, what I had been told, and reality. This was augmented by the fact that I was to go home and the services that I needed weren't ready and the services that I needed weren't in place. Every little thing was a huge battle, and a battle that I couldn't fight alone. I couldn't advocate for myself, and I had completely lost my independence. I went into the hospital completely independent. I came out of the hospital relent on people for everything, I couldn't speak. I could only communicate through writing. I didn't have oxygen set up. I didn't have humidification. I didn't have cleaning kits. Every little thing had several hoops to jump through. I was essentially stuck in my room because that was as far as the tubing would allow, It was hell, At that point, I kind of wished I could just go quietly in the night and die peacefully. I was tired of fighting and every little thing was a fight. I wanted to be free of suffering and able to breathe easy. It was the life I had feared and why I had been so adamant about not wanting a trach, no matter what. It was not a quality of life. I wanted to live. If someone had asked me if I had done the right thing by allowing them to put in trach in, I would've said "no". I would've said that dying would be preferable and that I wanted the trach out so that I could be allowed to go peacefully.
At this point, things are better. I have some hope. I am no longer completely incapacitated. I can be independent. I can have my life back, though not in the same capacity as before. In that, I am starting to reach acceptance. I know that this is a process, one that is ever changing and never truly complete. Though my life with the trach is different and though I miss my old life, I am learning that this new life can have be good too. It is different, but it can be different and good. I can experience joy and fun. The trach was meant to give me a chance at life. It has done this. I am alive. It is up to me, however, to make the most of that life. I am the master of my destiny. Life is for the living, and I must choose to live.
Getting a trach was a major life changing event. No one "wants" a trach. It is not something that is done electively. It is done when there are no other options . At the same time, there is nothing that could adequately prepare a person for life with a trach.
My life has become defined as - before the trach, and after the trach. It is definitely something that is difficult to adjust to. Doctors make it seem as if you get a trach and everything is all better. You go back to your life. But that isn't how it works. You go into surgery with one life, and you come out with another, and just as with your previous life, you must relearn everything. The hardest thing though is that you must mourn the loss of your old life. I think if you had more time to adjust to it, it might be better. But they came in one day and said they wanted me to think about having a tracheotomy, then I agreed, and I was set up for surgery the next day. From the first it was mentioned to surgery was 3 days. I didn't have time to think or process. I was told, you need this if you want to live. Okay, and then it was done.
My life now is completely different. I do miss my previous life. I mourn the loss of it. I will never carelessly take a shower, not using certain methods to be sure to not end up drowning myself. I will not be able to swim and have to be exceedingly careful around water. I will always have to be extremely vigilant about trach care, always prepared for it to get clogged or fall out, ect. Yes, I can do many of the things I did before. I have a life. I am alive. But not in the same way as before the trach. My life will never be as it was before this. And like the stages of death and dying, I have to mourn the loss of my old life and accept this new one.
This hasn't been easy, and I know that this road isn't close to being over. I know there will be many challenges ahead. There are moments when I have hope and I am okay. I also have moments in which I'm not, that I don't want this life. I want my old life back. But that isn't possible. One thing I wish is that I had had a chance to appreciate my old life and do the some things for the last time. For instance, I would love to go for a swim. You don't fully understand what you're losing when you get the trach. You can't truly comprehend the changes n your life. And you can't appreciate certain things until you no longer have them. Sometimes I am angry, angry because "Why me? Why do I have to deal with this? I don't want to have to deal with this." You have to allow yourself that anger. But in the end, it doesn't matter why. All that matters is that you do and therefore, accept it and move on.
The period after the initial trach, when I was sent home, is what I would call the great depression. It was a period in which I was crushed by what I had expected, what I had been told, and reality. This was augmented by the fact that I was to go home and the services that I needed weren't ready and the services that I needed weren't in place. Every little thing was a huge battle, and a battle that I couldn't fight alone. I couldn't advocate for myself, and I had completely lost my independence. I went into the hospital completely independent. I came out of the hospital relent on people for everything, I couldn't speak. I could only communicate through writing. I didn't have oxygen set up. I didn't have humidification. I didn't have cleaning kits. Every little thing had several hoops to jump through. I was essentially stuck in my room because that was as far as the tubing would allow, It was hell, At that point, I kind of wished I could just go quietly in the night and die peacefully. I was tired of fighting and every little thing was a fight. I wanted to be free of suffering and able to breathe easy. It was the life I had feared and why I had been so adamant about not wanting a trach, no matter what. It was not a quality of life. I wanted to live. If someone had asked me if I had done the right thing by allowing them to put in trach in, I would've said "no". I would've said that dying would be preferable and that I wanted the trach out so that I could be allowed to go peacefully.
At this point, things are better. I have some hope. I am no longer completely incapacitated. I can be independent. I can have my life back, though not in the same capacity as before. In that, I am starting to reach acceptance. I know that this is a process, one that is ever changing and never truly complete. Though my life with the trach is different and though I miss my old life, I am learning that this new life can have be good too. It is different, but it can be different and good. I can experience joy and fun. The trach was meant to give me a chance at life. It has done this. I am alive. It is up to me, however, to make the most of that life. I am the master of my destiny. Life is for the living, and I must choose to live.
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