I've accomplished nothing in such a long time. Since being home from the hospital I just don't feel like doing anything productive, I lay around my house and stare at social media which is both mind numbing and disappointing. I have just been through what could possibly be the most challenging event in my life, so many emotions went into the transplant and now it's over. Everything moved so fast it's hard to fathom that I actually went through it all. If I didn't have my prednisone moon face and bald head glaring back at me in the mirror everyday I don't know if I would believe I actually did go through it all. I deserve a break, to just rest. The calm after the storm. I just took too long of a break and realized that my life now consists of sitting in my house, going for occasional car rides but never inside facilities because of isolation, and visiting my doctors twice a week. It's so very boring, it's like I am stuck in this place of being bald and unattractive. That's such a shallow thing to say, or even feel considering how strong I am, I shouldn't care what I look like. But at the end of the day when all of my supporters are asleep and my brothers are drifting into sweet dreams I lie awake, staring at my ceiling. And I don't feel strong, I feel pathetic. I feel pathetic for not utilizing this time to write my book or write music. Work out even! I was so content with myself before all of this happened and now I am disgusted with myself. I'm sure I will figure out a way to deal with it but until that time comes I am going to drown myself in homework. It's so hard to start but once I have started it, It's nearly impossible to get me to stop unless the assignment is complete. So I think Beck said it best, speaking for all of us at some point in our lives.
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I couldn't stand having to talk to a therapist while in the hospital. There was one that I liked, but the other one just felt like a snitch to me, she also tried to tell me I had depression which I did not nor did I feel depressed, I just didn't like talking to her. The one thing that I will always remember from these unwilling therapy appointments is when the one I didn't like told me that I don't trust my body. I had never found the words to describe it, but she did. My body attacked my kidneys when I was seven and now it's attacking my marrow, I can't trust myself and that's a hard thing to do because I am stuck with myself for the rest of my life. This week my kidneys were enraged. Cyclosporine, an immunosuppressant, and Valganciclovir, an Anti-viral, caused my creatinine to sky rocket and my BUN to follow suit. I consumed 134 oz of water in one day just to try and combat these harsh numbers but it didn't matter, I simply retained all of the fluid. My ankles became swollen and my back grew very painful. Now normally if a medication is causing a vital organ to nearly fail you will simply stop the medication, but that is hard to do when the medications causing it are associated with you staying alive. The cyclosporine keeps my immune system suppressed enough for the new donor cells to begin to fully function, without this the graft wouldn't work at all and I would probably end up with graph vs host disease which is very painful. Valganciclovir was keeping my CMV under control until my D.C. trip which is now in April. Infectious Disease told them not to take me off of the anti-viral no matter what because if my CMV starts ramping up too early and the T-Cell Therapy in Washington isn't ready yet, there would be a slippery slope. My doctors didn't listen, and they have taken me off of it while lowering my cyclosporine dose. At the end of the week my kidney levels were back in a normal stable range and all the symptoms I had been having ceased. I was so relieved, but I am also scared because I don't want all of my organs to become inflamed from CMV. It's a fine balance and I am praying for my doctors as they are the ones calling the shots. The title gives it all away. I came home. For the first time in three months I came home and I saw my brothers. It was a day that I won't forget filled with love. I walked up my wooden steps and saw a sign on the door that said "Welcome Home Corinne!" there were balloons tied to the porch as well. The door swung open and Liberty and her family were waiting for me with Brownies. They don't know this but the chemotherapy changes my tastebuds and I can't stand chocolate now, I didn't tell them that though, I just ate the brownie and suffered in silence. Moments later I went into my room, now what I was expecting to see what my bare walls, with nothing to conceal the suffocating white walls. What I got was an entirely new bedroom, new tv hung on the wall, a head board for my bed with lights strung across it. Framed pictures of myself all around the room and a giant mirror. A black and white theme decorated my room and I fell in love immediately. Liberty's family and tons of others who helped re-design my room deserve so much. The amount of selflessness that is required for everything they have done for my family and I is beyond belief. I have been sleeping in my own bed. It's hard to fall asleep now, I take medicine to aid the process, but nothing feels better than being able to roll around at night in my queen as opposed to waking up drenched in menopausal sweat in my hospital bed, although at times that was comfortable too. Hopefully I can stay at home for a while and don't end up right back in the hospital. I still go for check ups twice a week but that's better than monthly stays. I am so grateful for my life and all of the people in it. Prom. Something that I will not be able to attend as a senior because of the many germs carried by a student body. Prom. Something I would love to attend if my immune system wasn't as weak as it is, but unfortunately this is my life. So this week I had my own prom. 1920's theme! Great Gatsby extravaganza with all of my nurses and doctors. It was a lovely day that the staff planned for me. I dressed up in an authentic flapper dress that was donated to me, I was picked up in a 1941 Cadillac Limo and driven around Gran Rapids before arriving at the front door of the hospital only to be greeted with a red carpet. A celebrity is what I felt like. Cameras flashing and my arm in another guiding me towards the party. When we got to the 11th floor I saw all of the staff and they were dresses up as well! I had created cute invitations prior to the actual dance so they knew they were coming, I just didn't expect them to be dressed up because it was a work day, they took time our of their work day to do this. It was amazing. We all danced to Bang Bang by Will I Am, then shared cake and sparkling grape juice. Everyone toasted to me and my family, I felt that I should've made a toast to them, thanking them for everything that they have done. As I was about to do it my mom did. For some reason I couldn't get the words to escape my throat, it seemed like saying them would be so final, like this is the end of my journey, which is far from true, but I won't see many of those faces for quite a while if ever again. |
AuthorWrite something about yourself. No need to be fancy, just an overview. Archives
April 2017
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