Here is the latest version of UnBlog, which also has suffered a lack of posting this past week or so. Ah well. Enjoy!
Friday, January 29, 2010
Transplant:
I am losing faith in my tx center. I have been on the list three months, which might not seem like a long time. But the last 2 times I have been sick, August and October, I was in a dire situation. In October, I had respiratory failure and my FEV1 is still 17%. This is me at my best, after pulmonary rehab. I am beginning to think that though supposedly I have a good status, I will have to get frighteningly sick again to get an even BETTER status, to get my lungs. I feel like, wishing I could edit out the drama in the statement, I often feel like I have lost my will to live through this whole thing. Or, at the very least, I am seeing that feeling slowly emerge from me, and though it horrifies me, it simultaneously frees me. My mind is a becoming a cesspool of firing synapses. I have so much to think about, a new passion for writing it out (not always here or on CG, but writing in general), yet I have an underlying feeling of like, why am I even doing this? I won't have the energy to follow this through, to get anybody to read it, to edit it later even. Why am I doing this, at all?
I want to get listed somewhere else but then I think, wouldn't I just be playing the numbers there instead of playing the numbers here and no matter what, the sickest gal gets the lungs, right? It doesn't REALLY matter how prepared your body is. Right now I am very much sick, and also very much in fighting form as much as I will ever be, and yet yet yet where are my lungs?
Then I worry about my attitude in a sort of Oprah's Secret kind of way (knowing, of course, that she did not invent that theory and similarly neither did the authors of The Secret itself). I wonder, if I woke up tomorrow with a better attitude would I get my lungs? Yet, I know that my first few weeks on the list I was indeed in a good spirit (mostly because of the excess CO2, steroid, and Valium, but nonetheless in great spirit). So if it was all about cosmic match of generosity to gratitude, I would have matched up then. In fact, it is more of a match of DNA strands, which I cannot control. But just in case, let me set the cosmic record straight: I would be amazingly grateful to receive lungs from a donor who is lovely and loving enough to give them to me. I have prepared my body and to the extent that I can, my soul. I have a bad attitude, but this attitude will indeed help me take care of my lungs, my body, and return to my life that, whether self-aggrandizing or not, I believe is worthwhile to other humans. I don't want to have to type, "Think of the children!" - but oh well, I already typed it.
So just to be clear, cosmos, I would be a grateful and trustworthy caretaker of a gift of life. Cranky and expressive, perhaps. But these are only two of the tools I have developed in taking care of myself, and the other self I hope to receive. And for the record, the cosmic record, I am only cranky about that which pertains to me personally in this struggle, and dearest cosmos, I think you would agree, that is fair.
Love, CG
Sunday, January 17, 2010
What I'm Learning About Relationships
I always figured (like most) that personal crisis (i.e. my illness, transplant, dying) would bring out the best in my relationships. I don't know why I thought this - if it's the way it's depicted in movies and books, if it's my Catholic upbringing and the secret belief that everyone is working from the same spiritual playbook (which of course we must not be), or what- but I must have been counting on this time in my life, more than I ever should have, to clean up the mess that is the personal relationships in my life.
As it turns out, my personal crisis of health is just bringing out the worst in my personal relationships.
Or should I say, it is polarizing my relationships. Some of the people that I feel most at ease with, that are the most appropriately supportive of me, and who I feel that I can truly count on, are my newer friends and people that outsiders (my family or older friends) would never assume I would count on. While others, I feel, are failing me.
I am lucky, blessed, thankful to have my mother. Other people do not have a mother like my mother- and even fewer get along with their mother in the way that I do. I adore my mother and we get along like peas and carrots. (My gramma always used to say that). I know my mother will be my caregiver and frankly, put up with me, in whatever way I present myself.
This post is meandering, but I like it. :) Love, CG
NOTES MAGOTES:
**Patient-Specific, Time-Varying Predictors of Post-ICU Informal Caregiver Burden: The Caregiver Outcomes After ICU Discharge Project Chest January 2010 137:88-94; published ahead of print September 17, 2009, doi:10.1378/chest.09-0795
As it turns out, my personal crisis of health is just bringing out the worst in my personal relationships.
Or should I say, it is polarizing my relationships. Some of the people that I feel most at ease with, that are the most appropriately supportive of me, and who I feel that I can truly count on, are my newer friends and people that outsiders (my family or older friends) would never assume I would count on. While others, I feel, are failing me.
I am lucky, blessed, thankful to have my mother. Other people do not have a mother like my mother- and even fewer get along with their mother in the way that I do. I adore my mother and we get along like peas and carrots. (My gramma always used to say that). I know my mother will be my caregiver and frankly, put up with me, in whatever way I present myself.
This post is meandering, but I like it. :) Love, CG
NOTES MAGOTES:
**Patient-Specific, Time-Varying Predictors of Post-ICU Informal Caregiver Burden: The Caregiver Outcomes After ICU Discharge Project Chest January 2010 137:88-94; published ahead of print September 17, 2009, doi:10.1378/chest.09-0795
That was a beautiful poem. You really have a gift with words.
ReplyDeleteBest,
Hua
Director of Blogger Networks
Wellsphere.com
This comment has been removed by the author.
ReplyDeleteThanks for your thoughts, but you should perhaps consider that a person can have sad feelings and a strong spirit at the same time. Happiness and faith are not the same thing, and I wouldn't be doing anyone with CF a favor to pretend that this experience is easy.
ReplyDeleteThank you for your support,