“CysticGal” a Top CF Blog, with other Bloggies!

Yay! We are a top blog by Registerered Nurses.Org :)

Welcome to Joshland: Helping Out My Friends at CysticLife

Welcome to Joshland: Helping Out My Friends at CysticLife:
 "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?

bp

Home from my bronch. Doing great. Time for food and sleep. My throat hurts so talkin=ow. Love, beth

Today Blew

Disclaimer to friends and family: Tomorrow I have a bronchoscopy, a procedure required many many many times post-transplant, that is not a big deal most of the time. Tomorrow is one of those times. In fact, I'm sorta looking forward to it because I haven't been sleeping well lately, and surely I will sleep well tomorrow, day and night! :) Today's annoyance at the hospital was not medical, it was ... procedural / paperworkurital / red-tape-tastical. Read the whole post- see how there's nothing in there about anything being wrong with me?   Everybody's blowin' up my phone before they read the email. :) Love you guys!

Dear Hospital Place;

Today was supposed to take 1-2 hours . . .

[approx 300 words have been edited out for my own protection,

but I will email them to you for your amusement, followers.]

. . .a fracking nightmare.

Sincerely,
:)
Beth Peters

Dear Dr. U-R-My-Favorite-Human,

I miss the Children's Hospital. What is your policy on 30 year olds that look 14?

Beth

Do i work here? This turning into a 9 to 5 situation.... Grr!

Pre op running 2 1/2 fhours being. That's fridiculous! I'm so ftired. F this.

Tweetin’ and Transplantin’

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! :)

<<Beth Peters November 11, 2010 at 4:35 pm #

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

(highly recommended!!)

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.

Great article!!>>

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!

Blogspot Tags: twitter, transplant, bloggers

CysticLife is the place to be!

Dear Friends!

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

Tweet Me? Tweet You!

Click on the picture above to follow Cystic Gal (aka Beth Peters) on twitter, @CGBethPeters!

Blogspot Tags: twitter, beth peters

Joshland, I am welcome there.

http://www.welcometojoshland.com

Blogspot Tags: phrases i hate, joshland, exercise

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!! >>

This suff-e-rage movement, I will not join.

 

(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.

Blogspot Tags: bloggers, CFFatBoy, phrases i hate

What do post-transplant CFers talk about?

A journey in cut and paste

 

Beth, Brandon                                                

Brandon: bp

Brandon: is that a recent pic in your fb profile?

Mary: yep!

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

Mary: thanks!

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.

Brandon: yeah

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

Brandon: man

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.

completely random video.

Breathe Easy, Gess.

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.

Love, CG