Tuesday, November 23, 2010
Thursday, November 18, 2010
"I am all for any organization that help the CF Community and promotes CF Awareness, so when CysticLife asked . . ."
One of my bloggy bffs made a video regarding Cystic Life and their membership drive, and what do you know- I totally agree with him. Watch the video today.
And p.s.- Do you think MeeGanko is a good name of a new puppet to be friends with Moganko?
Tuesday, November 16, 2010
Monday, November 15, 2010
Dear Hospital Place;
Today was supposed to take 1-2 hours . . .
. . .a fracking nightmare.
This image has nothing to do with this post, and yet it came up first when I googled “Tweetin’ and Transplantin’” which is my Super Secret Special CG Image System
There is a great article HERE: http://heidiallen.id.au/tcase-of-the-tweeting-kidney-patient/ about a doctor being referred by the hospital admins to revisit her/his patient because she was tweeting regarding her care, and it was clear that she had not understood a particular conversation. (That’s a lot to glean from a tweet, but… that’s another story).
I encourage you to read the article, or as always- just read my response! :)
As an avid blogger and social media user, with Cystic Fibrosis, who just underwent a double lung transplant- here is my opinion. The online transplant community is HUGE. People that participate in it are pretty open and well-aware that anything they put online will be read by a) everyone they know as they are usually dying b) all their social media contacts c)randoms with their disease or transplant type looking to support or criticize d) anyone who they write specifically about who has the sense to google themselves from time to time
The hospital would not have monitored her tweets and blog if she hadn’t mentioned them by name (the hospital, doctors, or staff). So- after that point, its fair game. I was contacted by both of the hospitals I was working with, by their PR departments, to thank me for my blogging. That is because, however, I only mention names when I’m saying something nice, and never mentioned my hospital until it was “out” on fb and some other sites due to the popularity of my site, and the crossover in my readership between real-life friends and internet friends.
What do you think, readership? Do you think people should talk openly using names of their caregivers? Or not? What do you think of my policy to not use names of doctors at all (though my Super Secret Pseudonym CG System is not that hard to decode if you do know the names of those involved)? Do you think bloggers should ever mention their care centers while being cared for, disregarding normal concerns that fabulous cystic gals like me have, such as stalking by strange internet personalities, haters, exes, futures, and religious fanatics (that, too, is another story) while they are a-healin’.
What do you think, oh loyal readership?!
P.S. Readership up to 180/day on the low end! Woot Woot!
Sunday, November 14, 2010
Thanks for reading Cystic Gal, and for following me on my journey to transplant and now recovering (just passed three months- woot woot). I want to invite CF patients, family and friends to join a site that I have found invaluable this past year – CysticLife.org . It is a social networking and messaging site for uncensored storytelling, problem solving and friend making!
This year, CysticLife would like to increase its membership (during its 2nd year!) They/We want to have 2011 members by Jan 11, 2011. (get it!?).
I would love it if all of my loyal CF readers would join. Particularly, I would love it if the site (CL), had more healthcare provider members – so if you are a healthcare provider, I MAJORLY encourage you to join!
Find the site here, poke around, and JOIN! Cystic Life, Org.
See you there!
CG Beth Peters
Saturday, November 13, 2010
Friday, November 12, 2010
Last night, Josh of Joshland and Moganko fame wrote a great post that you can find HERE . I encourage you to read it. The basic gist is that Josh doesn’t care for the term “No Excuses,” though he sees why people use it, and he’s not trying to put them down or anything.
Being a phrase-hater myself, (see the post about the term “clean-out”), I really like that Josh took the time to bring this up because clearly a lot of people had it on the mind, both pro and con, as well. This is what I said:
<<I agree. I made a similar post on CG last year, that I don't, personally, care for any phrase that demeans the different ways we all deal with our DIFFERENT versions of CF, lung disease, transplant...
I also do not like it that there is push toward extreme exercise, when we have different abilities at different stages of our disease. Am I failure because I NEVER ran a mile, and have NEVER walked one is less than 15 mins? Not at all. Many CFers have never sung onstage in front of hundreds of people, or climbed a latter with one hand holding a twenty pound theatre light in the other, or lifted a stage curtain into the fly. I don't think THOSE people are failures, so if I never run a marathon for CF, why am I?
Okay now I'm a ranting so I gotta cut n past this to CG. Goodnight Josh!! >>
Thursday, November 11, 2010
(Notes: My tech setup is much nicer than this; I am totally afraid of guns (and also clay-mation); I don't really look anything like Tina Turner.)
I am thirty, I have CF, I am post-tx after 5 surgeries, I almost died 3 times last year (literally), and I have never considered myself a “sufferer” or said, “I suffer from Cystic Fibrosis.”
I don’t really know any adults who would define themselves as “suffering” from CF, even when the s. is going down.
Lately, there has been a CFBloggy focus on phrases we hate in this field, which have included, “Clean out,” “I’m sorry,” (i.e. no one cares if you’re sorry if you do something that hurts my kid and I find out its because of your incompetence or fear of your superiors,) as well as several moms of tiny CFers and skinny CF ladies hear all the frackin’ time. Yesterday my BlogHomie aka “ CFFatBoy ” wrote a great article that you can find here: http://cffatboy.com .
Here was my response:
<<Today I read an article that said the typical "so and so suffers from CF," and I was like, "why is it always 'SUFFERS'?"- even when the article is about how someone is kickin’ butt? Can these wordsmithes* really not think of a way to write an article that raises awareness/prompts donation without defining a teenager in an article who is on a sport, in the arts, doing treatment (sound familiar?) as a SUFFERER? Why not highlight all s/he does and congratulate him/her for being wise beyond their years, and committing to health EVEN IF there are ups and downs in a this progressive illness?!
Grr. I love your soap boxes. I always try to climb up and join. >>
*the term wordsmithe is used very broadly. Not everyone can be the true wordsmithe that KRooney is.
Tuesday, November 9, 2010
A journey in cut and paste
Brandon: is that a recent pic in your fb profile?
Brandon: you look so cool
Mary: it is from me and my mom's visit to the cape
Brandon: one of my most exciting things post trans
Mary: i was trying to hide my slightly pudgy face that will go away soon! traveling- so much easier!
Brandon: haha yeah, for sure. how are you feeling?
Mary: i amf eeling okay. i am having a lot of sternum and scar pain lately
Brandon: ug that sucks
Mary: it feels like its getting worse and not better which sucks
Brandon: my thing in the middle always gets weird hurty pains
Mary: yeah they suck
Brandon: i hate it
Mary: did you know in heart transplants they take them out a year after? why not us?!
Brandon: i did not, i don't know...good q
Mary: probably "blah blah blah infection" or something. this is what i am worried about. 3 weeks ago i developed a bad wheez and they found the main airway to my left lung is swelling and irritated- not infected or rejecting though- so i still have the wheez
Brandon: yeah i had that basically sorta like a crazy wheeze, like a kazoo right?i have stents in my airways
Mary: yeah- worse wheezing than my old lungs. if i had a wheeze then i would just cough up the junk and it would stop. this is just unstoppable.
Brandon: yes i have that
Mary: you do? they might do that to me if it does not resolve. what kind of surgery was it to put them in?
Brandon: bronch, bronch in the or for stent placement...the wheeze basically comes and goes now for me, not ever as bad as it was the first 3-9 months, but it will come and go
Mary: hmm. blah.
Brandon: yes, not gonna lie, it sucks, but you do get more used to it
Mary: tho i have come to like bronchs since they do all of mine in the OR and i get such good sleep that day and next :) is it wrong?
Brandon: hahahaha, not at all, they aren't bad right? piece of cake really
Mary: no. i guess i behave pretty inappropriately under conscious sedation, which they haven't told me outright, but i read in my chart, "ms. peters has trouble relaxing during ... and attempts to "help" or gets very anxious and angry." haahha
Brandon: hahahahhha, i have said some things to them, a few times, one time i was waking up, with the thing in, that was not good, i remember it, but it was like a dream, no big whoop. i bitched once because i woke up with baiscally a fat lip, i was all "yo, nurse and he-nurse, take it easy on the lips, i'mma delicate flower"
Mary: haha. i think i hit on dr. ------ once. whoooops
Brandon: hahahaha well i just want to tell you
even if your face is alittle pudgy, that pic is just awesome
Brandon: i feel like cfers get their personalities back post tx because you have the energy to be all that you really are and i love it, it makes me happy, you look awesome
Mary: i feel like that= like its two years ago- instead of wanting to be home all the time, i want to go out all the time.
Mary: instead of wanting to be in jammies, i want to get dressed up
Brandon: it's awesome right? hahaha me too
Mary: i feel like i'm 20 again.
Brandon: you know what the best is?
Mary: i'm like WHERE'S THE PARTY AT?
Brandon: showering and getting ready in like 20 mins. that's the shit
Mary: no SHIT
Mary: i totally agree
Brandon: i would have to be up literally 2 hours before whatever it was i wanted to do to shower and cough and rest and get dressed and cough, you know the drill, fucking nightmare
Mary: that happened on accident like a month ago. i woke up late and had to get my prograf level done. i was jammies to beautiful in a half hour and i was like HOLY SHIT, I HAVEN'T DONE THIS SINCE ... GRADE SCHOOL
Brandon: hahaha, it's awesome right
Mary: it's totally awesome. i'm trying to get over my habitual dread (dredd?) of showering. i keep thinking, "oh jesus i have to shower now." and in reality it is NOT a hassle and actually nice again.
Brandon: i know--i'm so happy--you waited so long and were so good
Mary: it seems true though, that as soon as you get fed up waiting and are like FUCK THIS SHIT you get called
Brandon: have you taken care of that #1 on your list?
[THE NEXT TEN LINES OF TEXT HAVE BEEN EDITED BECAUSE I AM A LADY!]
Mary: dude i totally want to post this convo on cysticgal with the title WHAT POST-TRANSPLANT PATIENTS TALK ABOUT
Brandon: go for it-- you know, as much as i wished i could have experienced life without cf, it has shaped us, and for the better imo, and i think that few people get to experience the joys we do, for such normal activities...maybe there's a degree of sadness to that, but i personally embrace it
Mary: it is really great--on friday i weent to a football game at the h.s. i used to teach at (still friends with all the teachers) and - after, i was walking back to my car that waas parked FAR away (not a problem!) and stood there watching a bunch of tiny kids playing in under the football lights while their parents waited for the team to be ready to come home.it was just this moment of like I CAN BE OUTSIDE IN THE COLD FALL WEATHER, AND WALK TO MY CAR, AND TAKE MY TIME, AND NOT BECAUSE I'M GONNA PASS OUT!
Brandon: awesome--i remember, you posted osmething about being able to walk and talk at the same time, and it sounds like a joke...but as we both know, not a joke, not a joke in the least, boy is it nice to stroll along chatting
Mary: totally. and to be able to walk as fast as your friends or family without thinking I MIGHT DIE RIGHT NOW
Brandon: hahahaha yes
THIS HAS BEEN A RANDOM SAMPLING OF S. POST-TX CFers TALK ABOUT, TUNE IN AGAIN SOON.
Saturday, November 6, 2010
Wednesday, November 3, 2010
We have lost a fellow bloggy today, Gess, who was in the process of being listed for lung and liver transplants in Seattle. His wife, Lisa, keeps a blog about their marriage and management of Gess’ advanced CF.
As I have recently passed my three-month-aversary for transplant, it is important to remember the thousands of CF patients who have passed away without this second opportunity at life, and the loved ones they leave behind.
Breathe freely, Gess, and our prayers are with you and Lisa.