It has taken me a long time to find the courage or get past the anger to write this post, but I felt like it was time after a very eye opening experience at chruch today. Please forgive my typos it is very late and my meds have me half asleep, but if I don't get this out now I don't think I will.
About a month ago I had an appointment with my psychologist, her exact job is a pain managment psychologist who decides how you are handling with being sick and helps decide the best course of action for you care plan and your pain plan. I like her a lot, and respect everything she has ever said to me. We had gone in the week before to be evaluated by one of the pain docs who is her partner about getting a pain pump. It was explained to me that a pain pump is something we can't do becasue I am too prone to infection, and if I develope an infectin I could eslier end up paralyzed. I found myself with tears welling up in my eyes because pain control was beginnning to seem hopeless. My doc guided me into her room and laid on the situation in black and white.
The pain specialist physician who said that he couldn't safely put in the pain pump made his suggestion. The recommendation is that I be placed in palliative care, which I thought was hospice care, I thought they were telling me I was going to die, but they quickly explained that wasn't the case. They explained to me that I am officially terminally ill, I am not going to get better, and without a transplant (which they already have me ready to be shipped off to Nebraska for such a reason after the holidays when my husband gets home) I will most likely not live to see my son grow up. That put me into tears rather quickly and I don't like crying on front of other pople.
They also told me that the palliative care doctors would be putting me on PCA meanng they would manage my pain through my central line since I can't absorb it the normal way and the patches aren't easing the pain enough for me to even get any rest. My psychologist and the palliative care doc had a long conversation on the phone because they are very concerned about my nutritional state because I have lost a lot of weight, I cannot hold any color, I can barely walk without a walker or wheelchare, weakness, fatigue, and when they do my labs the way the specialist at Barnes have asked them to they look very bad. Also concerns about my heart, the malnutrition has caused heart damage, and a past of kidney failure. The GI doc has declared that I am in intestinal failure and need to be on TPN as soon as possible despite the problems we run into with infection, but at this hospital GI does not manage nutrition at all. My palliative care doc and psychologist have spoken at lenth and told me that I have been allowed to slip through all of these medical professional's finger tips and if it doesn't stop I will die. They said that because I am so medically complex the docs are afraid to care for me and want to pass me off to the next doc, and it becomes one doc after another and that can't keep happeneing, and these two amazings docs are going out of their way to find me a proper doc who will take over my nutrition because the hydration and potassium I get through my hickman are only going to keep me going so much longer.
That appointment was the scariest appointment of my life, to have the docs come out and tell me that I am terminal, tell me how sick I really am. I know I was sick, but I wasn't ready to accept how sick. I am so use to pretending that I am okay because I need to be okay, I have a little boy with autism who needs me to be okay all the time, and now they are telling me that they are restarting TPN as soon as they find the right doc who isn't afraid of me and then IV pain meds, and I am looking forward to the strength that comes with nutrition and I will be happy to not have to have so much pain that I excuse myself to another room to let my tears fall and compose myself before moving on with my day to dayd tasks. This appointment scared me and made me so angry at the same time.
I am thirty years old and I have a little boy whose whole world depends on me, I can't die on him. I am so afraid of transplant and I know it is the only chance I have to see my beautiful miracle son grow up. I was so angry with God when I got home from that appointment. I needed someone to blame, and He was the easiest target, and I spent weeks in a state of anger wanting to scream and destroy everything around me and hug my son and cry. It was after a very hard night where I found myself praying becasue I had nothing left to do. I prayed for acceptance, for the ability to move on and be happy for the time I have left and pray for the chance that I still have a chance at a future. It was as I sat there on my knees I made a decision. I could continue to be angry and bitter at the world or I could stand up and I could face this.
I had a choice, just like the choice I had when I decided I wanted to let go of my eating disorder. This time I made the choice that I was going to go smile, make the best out of my healthy days, and when they get my nutrition up and pain undercontrol I am going to do things that I want to do...organize my house, my pictures, decorate Damien's room, and spend all my free time working with Damien and helping him through his autism. I might be sick, but I am not dead, and I have a bucket list .I am hoping that my friends will help me accomplish some of the things on my bucket list. I also want to devote the time the Lord has given me to helping other people, helpng them see that God loves them. I am going to write my book, and I am going to live while I can. I am going to have a great birthday with awesome people this december before we head off to Nebraska, and when the transplant comes I am going to keep smiling and face it with as much bravery as i can, and when I feel like I can't be brave I am going to turn to the Lord and keep moving forward for my little boy and for my husband. I can do this.
God Bless all of you and and I hope that I can be an inspiration during all of this, not because I am brave or doing something that no else can do, but I hope to inspire people to want to go around and spread the love. You many can't change the world overnight, but just but showing love to one person every day that needs it makes a difference and you can make a difference.
