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Showing posts from April, 2012

"If I Were In Charge of the World"

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When I was eight, my mom bought me a book for my birthday called If I Were in Charge of the World (and other worries) . It was a children's poetry book that I still have. She wrote "To my little girl, who worries so much," and she put a heart sticker on the inside, too. My mom called me tonight and reminded me that I have always been a person who gets most stressed when I have too much free time, or when my schedule is unpredictable. I have always been this way, since I was very young. I remember that when I was a kid, I would also look at the calendar in the kitchen to figure out when summer would be over, because I actually did not like summertime that much. This makes me wonder if we ever really change our ways. This weekend, I had to surprise and wonderful evenings. The first night, I went to Thai food with my dear friend and then we went to a bar near the Symphony and might have secretly made fun of Symphony people. Secretly. The second night, I went out

Flip Flap

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from hyperbole and a half:  Thanks so much to all of my readers and new readers who messaged me about my last post. It is interesting that when I post poetry drafts, they usually get a bigger response that formal poems that I think are "done." The feedback also gave me a chance to read some of your similar posts, either those that stemmed from mine, or older one that you chose to share with me - about the issue of post-transplant and return to work and relationships, and general identity crisis blah blah.  Here are some of the things I have come up with in my two days long reflection: I am feeling a little bit better but it has come to my attention... ahem...wonder if you are reading... that perhaps I'm jumping into both "work" and work a little too much right now, and that is making these issues worse. I wonder if work is making them better. I wonder a lot of things.  I like to be busy. I like to have lots of projects, and I have trouble turning do

In memory and celebration, Brian Sercus

Brian, I was honored to know you so briefly at such an important time in our lives' journey. You changed me forever and I will never forget you, never stop thinking of you, never forget what you told me. I am drawn to stay up all night writing a letter to Brian, my friend, my brief friend, who I knew not as well as those who mourn him properly. I am mixed with emotions. I wonder how much of my current emotional state is delayed emotions from the last 18 months that I spent either struggling to live or struggling to prove that I was "living" - and now that I am clearly doing both - many emotions are releasing. I wonder what is delayed and what is real.  Today, a new transplant patient's mother writes to me, a woman I do not know, about her son who I do not know, [he writes this,]: >> Swollen >> Tired >> No appetite >> Sad >> Trying to process the death of the donor >> Bruised >> Stomach aches >> Dealing wit

Top Ten Totally Superficial Ways to Feel Better

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Wow, I thought I looked better in that photo but it only the tiny kitten that looks better, and even she looks pretty miserable. Get it? Blind kitty "looks" miserable. HAHAHAH. Today I took my staycation to a whole new level: Retail Therapy. Which I discovered was actually cheaper, per hour, than actual therapy, which really got my medical-spending, spreadsheet-building wheels turning. Remember when I used to write lots of top ten lists?  Well, here is one. Top Ten Totally Superficial Ways to Feel Better 1. Get a massage. 2. Get some sun, or if you are outlawed from any form of Vitamin D that doesn't come in a tiny blue capsule, congrats! You have CF, and you also can go sunless tanning. oooh..... 3. Shop for a new "little black dress." 4. Visit a totally girly store like the one I did, The Fairy Shoppe, in Boston. Buy something girly and fun. 5. Eat an ice cream. Yum! 6. Buy a piece of jewelry. I got new silver earrings with gold bases that

"Thanks, Joshy" or "I Spent My Hopes and Dreams at SuperTarget" (Thanks Katie)

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This adorable pic will minimize the random tragic nature of this post  and my current mindset.  It has been a harder month that most in CF land, and I am not immune to this. It's been a particularly hard week for me, for no particular physical reason. And tonight, I read this: http://www.welcometojoshland.com/2012/04/unknown.html#comment-form which was posted by our good friend Josh at Joshland.  Josh does not usually post anything too dark or serious, and this post is a bit of both and it also has a sort of poetic brilliance about it that has inspired me to write a little tonight about my own feelings. Thanks, Josh. So here is what's going on with me. As most of my readers know, I have pretty bad anxiety, and I dealt with it pretty well before my transplant and then even better for a while after my transplant. Lately, it's been much much worse. I think that I am now physically healthy enough to deal with a lot of the things I did not deal with, emotional

To blog or not to blog, that is the question

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 Hello, Tiny Bloggy . I am pretty sure that I have used that title before, perhaps even two times. Lately, there have been a lot of transplantiversaries of a lot of my friends, and also, a share of sad events from our transplant community. Anniversaries of deaths, new diagnosis, etc. As these issues have cropped up, I realized that a lot of my bloggies from a couple of years ago don't blog anymore, or much anymore - and of course I am one of them. These non-bloggers. A lot has been going on in my CF advocacy life this year, including speaking at a few events and starting to plan an event for my former/current CF center centered around THE POWER OF TWO movie that Ana and Isa made - all very good. I have started a couple of non-health writing projects, I left one of the theatre companies I used to work for and have moved on to working for two others, and things have solidified a bit at my "day job" teaching including planning a new program for the summer. YAY.