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Showing posts from February, 2010

CFF and attention to adult CFers

I already asked about this on CysticLife , so don't feel like you need to reply twice- but here is what I wonder . . . An issue came up in my cysticgal.blogspot.com inbox, and I am preparing to write about it on the blog. So I thought I'd ask you guys, Do you believe the Cystic Fibrosis Foundation serves adult patients? If so, how? If not, why not? What would you, as and adult patient, desire from the CFF? Do you think that the CFF promotes healthy, authentic images of CF adults and children? Do you think that the CFF promotes authentic, effective ways to parent CF children into independent, healthy adulthood?

Last Days to Order "Unto the East"

Pre -Orders for my chapbook will close this Monday! Info on "Unto the East: Words in Waiting" Cover Design by Salina Marie Gomez, Denver, CO. Introduction by Piper Beatty , New York, NY Published by my newly created and totally made up publishing company, Patient Press -- Get it? It's double- entendre - tastic ! Dedicated to Theresa, Tiffany, Amy, Piper, Jessica, Katey, Brandi, Stephanie, Andrea, all the other cystic gals, and also Ronnie. Special Thanks To: Vicki Peters; Kathleen Rooney; Kelsey Hubbard; Rick Lupert and his PoetrySuperhighway .com ; Teresa Bodwell , Unleash Your Voice and the members of Romance Unleashed. 35 Pages of Poetry and Prose! New Site to Pre -Order! You're not purchasing the book at this time, but it is the only way to guarantee I will order enough for you, yourself, to get a copy! Pre -Orders will be held for 14 days following the book's release in March! ORDER TODAY!

Vote for me in the Old Navy Supermodelquinn Search!

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Vote for me http://bit.ly/bMWJGB in the Old Navy SuperModelquinn Search!! I need a lot of votes because I put my picture up late, so vote for me today- And tomorrow! AND "Unto the East" now to include an introduction by Piper Beatty and cover art by Salina Marie Gomez! So exciting! Do NOT miss your opportunity to pre -order the chapbook! It's the only way to guarantee you'll get a copy of this limited edition print! Orders will be held for purchase when the book is released in March. Click HERE. to order! Love, CG bp

How Do You Organize Your Pills?

This from last night on CysticLife , in response to a question from a teen about how to get a handle on all those darned pills. It's all about organization, and plastic containers, baby. << I have all of my pill meds in a big blue basket in a drawer in my bathroom. This drawer is only for medicine related things. In the basket, I put all the separate containers from CVS. THEN, I have this three-stackable pill container thingie that is clear, and can separate into three different layers. In one layer, I have only my enzymes. On the second level, in the morning, I take out each med, put in the number I need to take for the day into that second level, and then drop the bottle in the basket. So, all of my meds for the day are in that second level. Then, I physically take the morning meds in the morning, mid-days ones at lunch, and dinner, late-night, etc. The third level of the tier thingie, I put what I call "specialty meds" like ibuprofen, pepto bismol - extra v

You Are My PCP: A stream of consciousness post

NEWSFLASH! Remember those, longtime CG readers? NEWSFLASH! "Unto the East" now to include an introduction by Piper Beatty and cover art by Salina Marie Gomez! So exciting! Do NOT miss your opportunity to pre -order the chapbook! It's the only way to guarantee you'll get a copy of this limited edition print! Orders will be held for purchase when the book is released in March. Click HERE. to order! Onward . . . About my appointment today, kinda, but really just a reflection on the idea of the PCP. This is a creative piece and not literally what happened today. But everything below has happened to me at some point in my life. You are my PCP and despite your name you are not a drug I did in the 70s, you are my primary care physician. You must see me because you are my physician of record, and I must see you because my insurance requires it. We do not want to see each other again, we are adversaries. I regard you like an elementary school principal and I am a naughty se

All About the Yuckies: for the cystic gals

P.S. Pre-Script: Remember, it's not too late to order CysticGal's limited edition chapbook, "Unto the East," by clicking HERE. Onward . . . This posted to Ronnie's blog in response to a young woman's posting to him. I think this is an important issue for us to think about and perhaps offer advice to young cystic gals (copied below) Tuesday, February 16, 2010 A Young Girl's Cry for Help I thought I would re-post this question and response because it applies to so many of us... Young Girl's Post: Mods, feel free to move this, as I am a teenager, but I'm seeking advice that adults can help with. I have a feeling I've posted things like this before. In Jan, I was in the hospital, got a gtube ..lungs went from 50% to 100%. Now, I am not sure..but I believe they are back at 50%. My weight has also dropped a few pounds because the machine was messing up. I don't know what to do with myself. I go into this cycle..hospital is great, bu

Unblog Poest is up

Unbloggies, pls respond to UnBlog post! If you are a cystic gal and do not have an invitation, email me at cysticgal@blogspot.com and I'll invite'cha! cg

Best Day EveRRRRR

P.S. Pre-Script: Remember, it's not too late to order CysticGal's limited edition chapbook, "Unto the East," by clicking HERE. Onward . . . Today, my mom and I got up relatively early and got out of the house by 11:00! This is a harrowing ( heroing ? eh?) journey not often achieved by choice around here. We went to the gym where she worked out and I did my weights routine and put some of the lazy gym-goers to shamitty shame. I think the gym should pay me to go the gym, do my work outs, and let people look at me and think, "Wow that's a good workout, and she's got the oxygen. I should really get going on this workout thing." THEN, I ate a yummitty yum sandwich and berry smoooooothy , and checked the sales of my book while still at the fancy guest-pass- tastic gym. Discovery: I've already sold 108 books. So super. THEN, I got a French manicure that put the self-applied ones I did in high school to a high degree of shame. This manicure only cost

One cystic gal's thoughts

This was posted by bloggy Piper, who has agreed (hope hope hopefully) to write the introduction to my chapbook, "Unto the East, " which you can still order by filling out the form below! Order fast, 113 sold in one day! These are some of Piper's thoughts on the waiting game that we are all in. So, gals, tell me (you know, as book research as my printing deadline approaches): What are you waiting for? Friday, February 12, 2010 More Thoughts on Waiting Note: the below text is a talk I gave last night at a wonderful CF fundraiser organized and chaired by a remarkable CF woman (and CF mom!) from one of the forums. She was kind enough to invite me to her event, and then asked that I share a few words about my story. I thought it fitting to repost here, but I have removed her name just to protect privacy. L has given you all some great information about CF, but what I'd like to do now is tell you a story. And, like so many of my personal stories, this one begins in a doct

Pre-Order My Chapbook, "Unto the East"

Fill out the form below to pre-order my chapbook. You have to arrow down to click "Submit"- Thanks! Loading...

Poet of the Week and Chapbook Release!

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Major poetry news here! This week, I was named Poet of the Week by Rick Lupert's PoetrySuperhighway.com . You can go to there to read three of my poems that were selected: "Eleven: Evenings and Endings;" "Four: Dinner-Time Discussions;" and "Three: Afternoon Assessment." I was especially happy to be selected as Poet of the Week because I know for a fact that I tried three times to get on that site in college and alas, could not. I guess I learned something in the last 8 years :) Second big announcement! I am releasing my first ever chapbook of poetry. I am self-publishing this book because I want to get it out to those who want it - fast, cheap and easy :) Or shall I say, inexpensively: I'll be adding a link on the site for pre-ordering the book, and will let you know as soon as it is available for purchase! I am very excited to share this book with all of you, and hope you will find it interesting! Thank you for all of your inspiration, support

So much news!

Cystic Gal announces release of first poetry chapbook, "Unto the East." I am designing the layout now and hope to have it ready to print by March 1. Super! If you are interested in pre-ordering a book, let me know! More info to follow tomorrow, when I announce EVEN MORE NEWS! (Not THE news, however. No new lungs yet. Just lots of writer-ie news.) In other news, I'm not feeling so hot. I had a pretty rough week with shortness of breath, that S.O.B., and started some oral antibiotics on Friday. Thankfully, I am literally already feeling somewhat better. Can you believe that? Friday, I celebrated Valentines Day with my two dear friends and my dear mother. Thanks to JSing^ for cooking a scrumptious meal and for inviting us to his lovely home, thanks to my CysticDad for a Pajamagram, and thanks to my Mom for a super day today! Oh yeah, and to Rita and Lucy^ for yummy eclairs at lunch! Great Valentines Day so far!

Cystic Gal named a Top Health Blogger by Wellsphere!

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CysticGal Cystic Fibrosis Community YAY YAY! This actually happened awhile back but I did not follow up on it! I am glad to be joining the Wellsphere community, and thankful that they recognized my bloggy :) CG

CG offers a piece of advice to comment writers:

If you mention "the devil" in an email to me, do not expect to receive a kind response. Love, CG

The Best of UnBlog: Edition 3

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Here is the latest version of UnBlog, which also has suffered a lack of posting this past week or so. Ah well. Enjoy! Friday, January 29, 2010 Transplant: I am losing faith in my tx center. I have been on the list three months, which might not seem like a long time. But the last 2 times I have been sick, August and October, I was in a dire situation. In October, I had respiratory failure and my FEV 1 is still 17%. This is me at my best, after pulmonary rehab. I am beginning to think that though supposedly I have a good status, I will have to get frighteningly sick again to get an even BETTER status, to get my lungs. I feel like, wishing I could edit out the drama in the statement, I often feel like I have lost my will to live through this whole thing. Or, at the very least, I am seeing that feeling slowly emerge from me, and though it horrifies me, it simultaneously frees me. My mind is a becoming a cesspool of firing synapses. I have so much to think about, a new passi

Where I'm At

I am here. There is no news. Alas, bloggies of the universe, there is no news. Actually, there is a bit of news but I did not get my lungs, and so, no Real News. I have officially decided to go forward with getting double listed. I will remain here, where I live, so that I can stay on this list here, but am looking into centers who accept double listings and create an arrangement for the patient to travel to receive the transplant. I have narrowed it down, I think, to about 2 clinics, leaning toward the one more than the other. I am being purposefully vague because in this wide world of weirdos, I don't prefer to get into doctor-naming or hospital-shopping through the blog. I just do that privately:) In my poll of CG post preferences, you all voted that you prefer "random diary entry type of bullshit"- so here you go: In other news, my Mom and I are doing well but running out of activities which amuse ourselves. Thank goodness we discovered the 1st season of Damages on DV