sisterly love
I guess since I am still feeling up to par I will do the update. I really wish my family wouldnt push me to do this so much, especially when I dont feel like it. Like days like today. I've decided to go ahead and take the stronger medicine. When I was approached at the option of Hospice, I had decided it was enough. I know a lot of people look down on me for that decision, but it was one I had to make. My body, my malabsorption, Gastreoparasis and reflair of Chrones made me feel...I was done. 4 years of fighting a losing battle. 4 years of pain and agony. I just want to be let go. Maybe then I will find peace. In a months time, we found out I was denied TPN due to TPN Failure(line gets sepsis twice), but I could still fight somehow, I proved chicken. As we all sat around one another at the table, I looked at my casemanager Maggie and said "Maggie, I dont want to fight anymore." We all knew that a transplant was NOT an option because I would not survive it. My body would not survive it. Heart failure as well as other heath issues would not allow me to be stable enough to undergo one. And with that, we came to hospice. It wasnt an easy decision, and it wasnt easy going through all the tests. I had told myself awhile ago that I would not allow anymore shots or tests to confirm anything. It has been 4 years since I could eat anything without throwing up. And it was 4 years of constant line infections. Of having a line pulled and put back elsewhere on my body. It hurt. It hurt a lot. It really hurt when they would try and advance a Piccline and it wouldnt go any furthur due to scar tissue. And then when we were told that this was my last accessible line, I had 2 choices. I could continue with life as is, knowing that I would die in pain. There is no way for my body to absorb. The reason I get hydration now, is because its *NOT* a central line. You get TPN and other medicine with a central line. And I would have done that if I had more options. If one of them just looked to me and told me "Nancy we can try this because yoru body is still strong." I couldnt. I was tired. I know so many people were disappointed in me. What else is new? I'm always trying to do the right thing and to take the route everyone wants me too. I couldnt anymore. My entire life, I lived for others. And you are right. Had it been a few years earlier, and we got to Oprah....but that didnt happen did it? As each test confirmed to me that my body was tired(gastric stomach emptying test, colonoscopy, endoscopy, and heart scan). My body was tired. I needed to make the decision for me. Allthier lives the kids new I have been sick. Am I proud that they see me like this? Hell no. Sometiems, I wish someone would tuck me away in a private room at an Adult Home. That would be Nurse Jennys' answer. They feel my surroundings are too chaotic and stressfull for me. But to leave my family?? It's been about 2 months since hospice. 1 1/2 I think. And I not have muscle atrophy, and I need to be held everywhere I walk. I have fallen so many times. And sprained my back, my hip, my elbow. My freedom is totally gone. Do you think I like to sit back here, all alone all day by myself? I hear them living outside of this room. Thats it. I'm stuck in a room where people take pictures and say "smile". I heard from Mom that someone even called me fat in some of the thread. That was the worst thing you could ever say about me. PJs request? Because my clothes no longer fit and I gave them to my neice. I had requested PJ's because thats all I do. Lay back here staring at a blank screen because everyone gave up on you and they are now waiting for you to die, wanting your room when you do. Oh, my self esteem is sky high now. One question had a TMI warning. And no, I dont go. I have to have a medical enema once a week. How's that for fun huh? I cannot stand on my own. I dont have the strength. My whole right side is agony due to Chrones. But because of hospice, we chose comfort not cure. I lived 30+ years for every body but me. And if you think laying here in the back room of a house is exciting? Trust me, it's not. It makes your self esteem plummet. Yes, Jenny helps all she can. Because of me, she is having issues with food due to stress. But when they tried to seperate us, Jennifer had a huge fit and bad panic atttack. I get hydration 2 times a week for comfort. Oxygen due to low levels, and I take a blood pressure medicine to keep that from going to low in my sleep. Apparently I have stopped breathing a few times in my sleep. I wish they would have jsut let me go. I can drink a little. But I am dehydrated every week. So dehydrated and undernourished that my lips crack at the end of it. I have dry sores in my mouth, and my teeth are this way, not from METH, they are this way due to Bulimia. And since it was said I live in a shack, there you go. I cant afford to have anything done on my teeth. You see, thats why I smile that stupid smile you all said I have. I keep my site going because its all that I have outside of this room. I hope deep in my stomach and deep in my heart that someone hears me. So they WONT choose the side I chose. The Groshong is accessed 4 times a week only. For fluids. Not TPN. Why? Because 4 years of fighting does that to you. I was done fighting. I didnt want to pursue any more cures. Because not one cure came to light in my 4 years of fighting. So if you still want to call me names, or make me out to be some loser monster, I guess its your choice. I just wish you would understand that it hurts ME. It doesnt hurt Mom or Jenny. It hurts me. What did *I* do to make you hate me so much? The pictures?? I take a gazillion pictures because years from now, when those kids look back? They can see what they were doing at that moment, of that hour of that day. Thursday I began taking a medicine that will likely make me sleep most of the time. But I am taking it due to severe bone pain and other pain reasons. I am alrady up to 200 on my patch. So we have to go to stronger. I take Diludad for breakthrough pain, and its a liquid. The monster of amout of medicine I take during the day is mixed with apple sauce. So if I was in this for attention or appeal, please tell me, where is the email adress that you can reach me at? Where is the phone number, where you can call ME. Where? You make me feel so low. And I know you will find humor in that. And that is so wrong. Finding humor in someone elses pain is just indescribable mean. I wouldnt wish this situation on anyone. You see, my nurses would like for me to go into a place where I would be with other people. Maybe laugh and play games with someone like me. But I'm stuck. Enourmous amount of guilt, and frustration, keep me here. As well as other reasons. So guys I may not be pretty. I may not be thin enough. I may not look like I am dying. What does it matter? are you going to celebrate my death? Or do you find enjoyment in ridiculing me like so many others have in my life time. I chose, to give up the fight. No more cures. No more surgeries. INstead a very slow and agonizing death. I wanted to rest for ME now. I wanted to give myself the break and allow nature to shut me down. And as my nurses see certain symptoms of that, I am still not proud. All my life I've been made fun of. What would be different now. There, I think I answered all of your questions. Just when I think its "over", a month later I am shoved back into it and read just how low some people think I am. You mock my trips to Burger King. It takes getting me ready for there about 10 minutes. I go in and I talk with the staff and drink a little coffee. Why? Because it is the only thing of freedom I have left. The rest is spent back here. How can you make fun of a poem written so beautifully by a young woman who had to fight for everything she has in life? One who puts everything aside to make sure her family is ok. And yes, I have visitors, I have a chaplain who baptized us. I have visitors from all over, and we talk, cry and laugh. They are wonderfull visits. Anyone is welcome to visit me. I am no monster. I am lonely. I know I'm not pretty. I've known that forever. When the kids come to visit there is no talk of Nanny dying. I pray to God they dont talk about it at home. Insttead, they come back here to play games, to write or color. All because since they were able to move, Nanny taught them to color. They dont focus on me leaving them. I pray to God they dont fucos on that. They are just children. And I am just me. God bless Nancy Oh, and about the 2 year old can of raid that is in every picture. Deathly scared of spiders. | 
True
Lifetime
