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Showing posts from November, 2010

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

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

Welcome to Joshland: Helping Out My Friends at CysticLife

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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’

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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 me

CysticLife is the place to be!

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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!

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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.

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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

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

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  (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 sa

What do post-transplant CFers talk about?

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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

completely random video.

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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