Sunday, December 9, 2012
Wednesday, June 6, 2012
|Page Loads||Unique Visits||First Time Visits||Returning Visits|
Friday, May 25, 2012
1. If I have an appointment with a doctor, I expect to, at some point, however brief or fleeting, see an actual doctor.
2. If I have been sent all over creation doing expensive and invasive tests, I expect that a doctor will review them with me at the appointment for which I have cleared my schedule, traveled, finagled and paid for.
3. I expect that if a physician is not available to see me, I will be informed, and have the opportunity to cancel the appointment, and that my insurance will not be billed as though I did see a physician.
4. I expect to see a physician whose name bears some resemblance to the name I submitted to my insurance company and primary care physician. A close resemblance would be preferred. This would help me help you keep up the facade that you are actually seeing all of the patients that the insurance companies (and I) are billed for.
5. If I am asked to do any invasive tests, I ask that they are thoroughly and accurately prepared, and that I am not sent back repeatedly in a short interval because an order was written wrong or two people who are on a "team" forgot to speak to each other.
6. If someone is going to touch my body in any way, I expect that they tell me exactly what they are going to do and that it has some apparent relevance to the reason for the visit, not a curiosity related to my very long medical history or a paper they are writing.
7. If a person is going to enter my room, I expect that they introduce themselves and tell me what they do for a living, as in, "Hi, I'm Sally, I'm a nurse practitioner here." Just as you don't enter my workplace and know everyone, I don't know everyone in yours. And we really do not need to pretend that we remember each other.
8. If someone is going to call me on the phone, I expect that they similarly identify themselves and the office from which they are calling, and the purpose of the call. Just like in the rest of adult society.
9. I expect that we spend more time communicating with me than staring at a piece of paper or computer. You have had ample time to review materials before meeting with me and it is just ridiculous to watch you make phone calls or play with the computer and squint while your poor internet connection times out, then leave saying that we will have to follow up. I am here at this appointment, this is me following up.
10. I expect that I'm not given alarming news and then told that there is not a physician available to speak to me, but one will be available next week. I will be in an alarmed state of mind from this alarming news until next week, but thanks for sharing!
Thursday, May 24, 2012
Cystic Gal: Cliff, Put Down That Hoagie!: You might be wondering, right about now - What does CG have to do with HH (Dr. Heathcliff Huxtible)? Well, I'll tell you. "Cliff," as we all...
Tuesday, May 22, 2012
My sister's favorite posts are the ones when I write a bunch of random stuff that comes to mind and so for sister, I say, here you are:
My high school English teacher posted a poem today by Charles Bukowski that brought back a lot of memories for me of old friends and old times and mostly of learning to write in a stream of consciousness in my high school English class, maybe because I hadn't written like that before, or maybe because I didn't know that's what it was or what I ought to be calling it.
I remember that Kathy always wrote much more metered work than I did, and she still does, and I still don't . . . know how I feel about that.
Here is the poem that Mrs. A posted:
Hemingway Never Did This
by Charles Bukowski
I read that he lost a suitcase full of manuscripts on a
train and that they never were recovered.
I can't match the agony of this
but the other night I wrote a 3-page poem
upon this computer
and through my lack of diligence and
and by playing around with commands
on the menu
I somehow managed to erase the poem
believe me, such a thing is difficult to do
even for a novice
but I somehow managed to do
now I don't think this 3-pager was immortal
but there were some crazy wild lines,
now gone forever.
it bothers more than a touch, it's some-
thing like knocking over a good bottle of
and writing about it hardly makes a good
still, I thought somehow you'd like to
if not, at least you've read this far
and there could be better work
down the line.
let's hope so, for your sake
I remember, then, that Allison and Arthur and Brian and I had an ongoing joke about Charles Bukowski mostly because Arthur hated Charles Bukowski and that we once got drunk in a park and laid in the grass looking at the moon having an argument about if it was pronounced "Bookowski" or "Buckowski" and that Arthur won because we were all in love with him.
I remember that this week I was shocked to learn that I had deleted a pivotal email FOREVER and that for all my sleuthing it was gone gone gone, as I tried to find it like the last left clue in the rebuilding of what had been before, to see what’s left there now.
I had a heartwarming moment with a few friends a few nights ago and the only way I can describe what warmed my heart is to say and really mean it, You didn’t have to do that for me. But you did. And I’m so thankful.
And for once, you would not believe it, but the thankful feeling and it’s landing spot is not the romance or the one who brought it.
Perhaps that doesn’t make any sense to you, but it makes sense to me in the place of the text that’s gone forever.
I wonder about cliches in life and in writing, like writing a poem about losing some text on a hard or floppy drive so that it doesn’t exist, the way a floppy drive doesn’t exist: any more.
I wonder why we hate cliches and love cliches and so we call them “universal,” when it’s all different words for the feeling of “I’ve heard that before,” and the difference is whether it bores you.
I wonder about the accent of e in French and if Kathy will correct it, silently, secretly, above.
I wonder if Kathy will wonder why I’m not calling her Kathleen in this blog, or if she’ll ask me to change the name or her name altogether tomorrow.
If so, I will name her Catherine. That’ll fool them.
I wonder about Catholic girls that change their names in youth or adulthood and I wonder about a movie called “We’ve Been Reading Joyce In Class" that my friend made in 1996. I’ve been reading (and I’m not kidding) A Portrait of the Artist as a Young Man again, no kidding nor exaggeration to the content of the rest of this post, (which I realize now, only a few people will enjoy). I’ve been reading Joyce in class, literally, only because I found a copy and it makes a good decoy book for sitting next to a student trying to model a good reading habit while spying on them and their progress or lack.
A car crashed outside.
I like the way the Bukowski poem ends with a comment about the Bukowski poem and how it doesn’t accomplish a lot, but promises to try to accomplish something tomorrow.
I like poems that promise something for tomorrow.
Monday, May 14, 2012
|Scary pictures of birds stress me out.|
My last post made me think about things in my day that acutely stress me out. Here is my list from today.
In other news, I spent the weekend with my bff and came to many realizations about my stress and anxiety level that have already made my dealing with stress better, as I try to make some concrete decisions about what I can control in life to lessen my anxiety.
Oh yeah, here's the list:
Top Ten Stresses for Me, Myself and more Me.
1. Waking up late.
2. People being loud for no good reason. Literally, I don't mind loud laughter or loud talking. I can't stand yelling, slamming, or generally loudness with negative motivation.
3. People swearing for no good reason. See above.
4. Not being able to sleep when I'm supposed to be sleeping, but being sleepy when I'm not supposed to be sleeping.
5. People calling my on the phone who I don't know to talk about something I don't care about.
6. My house getting inexplicably messy despite the fact that I try to keep it explicably clean. Note to self: "explicably" is clearly not a word, yet "inexplicably" is a word - which brings about the question, how can you add a prefix to a word that does not exist, and make another real word?
7. Lack of cheese in my refrigerator. General lack of any food craved within my immediate reach.
8. Pieces of paper. So many pieces paper. "Limitless paper, in a paperless world." - The Office.
9. Not being able to find parking and then regretting my decision to stop renting a parking space. Conversely, finding parking and then regretting paying for parking all those months.
10. Writing a blog post that doesn't accomplish what I hoped it would.
Wednesday, May 9, 2012
|These crazy pool noodle women came up when I searched for the title of this blog.|
So.... #1 cause of stress: multi-generational noodle-based water aerobics?
This list of TOP TEN CAUSES OF STRESS is from a random internet place, but I found similar lists all over so I'm not going to cite it.
Here is what I think about stress: I need to reduce mine but I am not sure what is causing it because it seems that everything is causing it. So, here is a top ten list and I'm going to comment on each item as an exercise in trying to figure out my personal stresses. My thoughts are in purple.
1. Self-criticism. Tame your inner critic (that’s the part of you that shakes a finger at you). Focus on your strengths and forgive yourself.
Tuesday, May 8, 2012
Monday, May 7, 2012
I found another poem that seems to have preceded the draft I posted of "My Body Remembers" a few weeks ago. It seems I wrote a lot of poetry in the year 2010 that I do not remember at all now. I can only assume that I wrote most of it while on drugs (legal drugs) but who's to say? I remember nothing.
This poem I found, I will not publish because it is even too personal for this blog (I think I can hear my bff gasping across the city, "It cannot be true!").
I will copy the repetition for you:
but i'm not dead or dying,
i'm a living breathing person
with miles left to swim
I think it's a pretty good poem, and if I have some more energy another night, perhaps I'll edit out the scandalous bits and then put it on here for you. Although, it will only be half as interesting after that. ;)
I think it's interesting that I could ever write a poem that I wouldn't remember writing, however basic or unfinished it was.
I am listening to that Iron and Wine song that I wrote about a few million times on here, "The Trapeze Swinger," hoping it will inspire me to write something at least vaguely interesting...
wait for it. . .
WELL! It worked but I'm not gonna post it here, I did it in Word and will keep it for a later date, when I probably won't remember that I wrote it.
Sunday, May 6, 2012
I burst a tiny blood vessel in my eye. The school nurse says, "It was probably the sneezing." Sigh.
I am afraid of Visine, Claymation, and puppets that look human but aren't.
My cat is meowing in a high pitched kitten voice which makes me think she is getting more Deaf.
The kid from the Beastie Boys died and that is oddly sad for me and I can't tell you why because of privacy.
Eli Manning is really annoying on SNL.
I saw Guys and Dolls tonight. I freaking love Guys and Dolls. What's in the dailiy news? I'll tell you what's in the dailiy news.
Rhianna cannot sing.
Either can I (lately)
And I cannot wait for summer.
This is all the news that fit to print. More substantial post to follow....
@bethpeters on the tweeters.
Sunday, April 29, 2012
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 for Italian food with another friend, and then we went to the grocery store: my favorite thing!
Sidenote: Going to the grocery store or CVS on a weekend night, the later the better, is my favorite thing because the store is usually waaaay less crowded and you feel like some sort of domestic goddess or saint just being in the place. And weird things happen, like tonight, a man sliced up a mango for me to eat. LOVELY!
I also slept 'til at least noon today. YAY.
So I wonder, if I work really hard, I'll even admit - I work too hard - due to my bizarre obsessive work ethic and also my apparent duel career - am I able to balance this by resting "hard?" At my core, I am a poor mult-tasker. I like to work on one thing or aspect with complete dedication, and focus on nothing else. If I am "relaxing," I also like to do that fully.
Today I accomplished...nothing. One load of laundry but ... otherwise, nothing. Isn't that good? Or is it bad?
My mom said, "I just think you have a system that makes your life work and if you don't get to keep that system, then none of it works." Perhaps she is right.
Hmm. These are my random thoughts about making life work. Thanks, mommy!
Thursday, April 26, 2012
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 down things that I think might be either meaningful or fun. I am working on this. I eventually need to pick one career over another, I realize this.
- I like to be alone. Although when I'm around people, I am very extroverted, I would gladly stay home and work on a project or watch tv or nap over most activities of daily living. I am a person that likes to be alone and hates meeting men for a variety of reasons, who also likes sex (uh..with men...just to clarify) and cuddling. Some women like being single for a long time and can just give up S and C (sex and cuddling). I am not one of these people. I eventually need to pick a lifestyle, I realize this.
- I liked being skinny. Although I'm not really any other person's definition of "not skinny" right now, I really don't like my new bod as much as I liked my old one. I know that my new body is much healthier than my old body, but I would really like my flat stomach back. That is ridiculously superficial. I realize this.
- I want to get another tattoo. All of you Duke folks are getting them, and you prompted me to ask a few of my medical team people about this today. Their responses will make for another post. There are stupid health risks with most of what my lifestyle is, I realize this.
- I have a lot of anxiety. Some of it is logical and can be explained pretty easily by looking at the history of my life and body. Some of it is illogical and more of a physical response to some sort of biochemical psychological yadda yadda. I realize this. When it gets worse, it just gets worse, and really all I can do is wait for it to get better. I do like it when it's better, just for the record.
- I like to be in charge of things. I didn't really realize this totally until my bff T-Money pointed out that she never saw me so nervous as when we went to Baby Class together. I wanted to teach the class. I know nothing about babies, but I'd rather teach the Baby Class than meet the strangers with their babies. I can't go through life and be in charge of ALL THE THINGS, I realize this
Hmm. These are the things I'm thinking about lately.
Thanks for reading the update. And for reading in general. Oh, and I'm tweeting again. @bethpeters
Monday, April 23, 2012
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,]:
>> No appetite
>> Trying to process the death of the donor
>> Stomach aches
>> Dealing with a lifetime of "sick kid mentality"
>> Not sleeping well
>> Blood clots in both arms
And I wonder about one word: sad. I wonder how patients ever really recover from the sadness they feel preparing for either transplant or death, how patients really are unable to share the sadness they feel with the world because they are meant to be so grateful and in this basic world that thinks of 1 dimensional emotions: grateful is happy - I wonder how anyone gets through it, and I wonder how I get through it.
This is what I wrote:
In the celebration of Brian, the beauty of his story, is that he NEVER forgot his.
Thursday, April 19, 2012
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 will not make my ears itch. I will wear them everyday until I lose one.
7. Buy a gift for someone. I bought a math-themed t-shirt for a math-themed friend.
8. Get your nails done! OOOH, fancy.
9. Spend some time on a rooftop place in a pretty city and take in the yummy springtime air and surroundings. Pretend you are Snow White and chat with a bird, if one happens to come about.
10. Take yourself out for a hearty dinner and a martini or lemonade.
These tips may not make you feel completely better, but damn girl, you'll look good, and that is half the battle.
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:
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, emotionally speaking, in the year before my transplant and the year after. I am finding myself getting upset over memories from things from that long ago, or even memories of things that happened to me or around me that I haven't thought of, at all, since they first happened. And then I get all upset and can't stop until I sleep for a long time. I also think of things, or remember things, that I absolutely ignored or left to the side prior to my transplant and freakishly obsess if I can figure out a way to clean up those messes now- even though I don't really want to.
And, like Josh's post above, I am finding myself behind the pace of my peer group - to put it randomly in human development terms. In order to prepare for my transplant and sort of as necessary outcome of my failing health, I distanced myself from most if not all unhealthy people or relationships in my life. My physical and emotional state simply did not allow me to expend the energy that it took to keep negative people or behaviors around me. However, now I find myself in a rather lonely place.
I don't want to share too much on here about my personal life, but suffice it to say that my romantic life is not going very well and I'm faced with a lot of the issues that a lot of other bloggers have written about, and that I published poems about earlier last year, with cf/transplant/child bearing/health choice making and etc combing with DATING? It's like, are you fucking kidding me? This is a drastic over simplification of the male-female situation for 30somethings in America, and I'm no sociologist, but suffice it say that a lot of men my age really only want to be in relationships IF they want to get married relatively soon SO THAT they can have children. So, great. Yes, that's a simple version and YES, men are just as complicated as women blah blah blah- but you know what I'm saying is true, and most of my male friends admit it. In the past two years, 3 of my ex boyfriends have gotten married and were upset that I did not attend their weddings. Can I again get a ARE YOU FUCKING KIDDING ME?
I feel like my professional life is going well, while my personal life is failing. It seems like my work life is an endless series of meetings, and that it seems like on any given day, I can call a meeting together and more people will attend it than my birthday party. Something is wrong with that. I don't even like meetings - so many humans in one room talking at once. Yikes.
Anyway, this post is rather incoherent but to say that I'm not having a particularly good time lately but that I have guilt in typing this out, because physically I am doing well (with the exception of a lot of fatigue that is mostly because of my busted thyroid) - so what do I have to complain about? I also wonder if my mind/body is used to spending periods of time not feeling well - not that I'm a hypochondriac but that some part of my brain is trained to coddle myself up in bed when I need to reset myself. Maybe that's good, maybe that's bad.
I am going to try to go to sleep now.
Friday, April 6, 2012
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.
My best friend is having a baby all on her own and we are so excited! I have the privilege of being her birthing partner, and I cannot wait for the experience. We took our first Birthing Class last week, and clearly I was the best "husband" in the place.
So, I wonder about a return to blogging. The pros to returning to blogging are thus:
1. Blogging is fun
2. Blogging is expressive.
3. Blogging connects me to lots of people at once when there are times that I am too busy to keep up with it all.
The cons to blogging are these:
1. People tend to over analyze my blog and call me with random comments on it.
2. Since I'm back teaching now and my students are mostly stalkers, they may/may not read this.
3. Can I really commit to blogging nightly or weekly?
The reasons that I am pondering coming back aboard are that I am having a lot of post transplant issues, from a social/emotional/brainy perspective. My health has been mostly stellar (except that I blame every stomach problem I have on the fact that the new enzymes all blow), but I have more anxiety now than I did before my transplant. Hmm. Then again, I have more going on now than I did before my transplant.
Also, I like to have a venue upon which to publish pictures of my cat.
Friday, February 24, 2012
Today my girl Amy and I discovered that we, and many of our bloggies, have been named in a list of 12 CF bloggers as most influential. They conducted a new-media study during 2009/2010, and the results were published more recently.
I was happy to review this listing because I think that it, on the whole, accurately describes the sphere of influence that some bloggers had. I DO NOT like that Novartis / CLIO Healthcare made up a "fictional patient" which I most likely interacted with. I think that is just unethical and ... weird.
So, look at the study - what do you think?
Note that my statistics as listed in the report are quite dated.
Tuesday, February 14, 2012
Guess what I got for Valentine’s Day?
I got a bloggy award from my friend Amy! She has a great blog at http://www.mycfjourney.blogspot.com.
Amy encourages me to write more often – or like, at all – so perhaps I shall. Bloggy life has changed for me a bit, I must say, now that I am back to teaching full time. I feel a little less apt to put it all out there than I did before. However, just last week I did a guest lecture for my friend’s AP Bio class and it was awesome – and I showed them my blog an the NPR interview and all the other internettie stuff at the end of the lecture, and they loved it. It felt great to teach kids the science of CF along with some real-life anecdotal stories. It is always a big learning experience for ME to remember that there is so much that most don’t understand about CF, and so much that is in some ways illogical when we first learn of it.
In other news, how about those new drug approvals?