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Showing posts from March, 2010

Day 2

An echocardiogram, a CT with both the drinking and the IV contrast, 30 vials of blood, a "bubble test" on my heart, and a 2.5 hour nap later, I'm doin' pretty good. More tomorrow.

Yo Yo From O-Hi-O

At Cleveland Clinic Guesthouse safely! Continental Airlines- not a problem with my o2! Actually very helpful!! All went well and restin' up for doctor day 1 tomorrow. Goodnight!!

Help Pass ClinicalTrials Bill for CF

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. Dear Advocate: In the last few weeks, there have been several important developments both in health care legislation and in CF Advocacy. See what’s new and learn how you can get in on the action! Legislative Update New Health Reform Bill Includes Provisions that Impact People with CF On Tuesday, March 23rd, President Obama signed into law a health reform bill that includes provisions that impact people with cystic fibrosis (CF). While the Foundation has not taken a position on any particular health reform bill, we have strongly encouraged officials to include specific reforms that are important for the treatment of CF. Learn about provisions in the bill that benefit people with CF. Clinical Trials Bill Not Included in Health Reform -- Campaign to Pass Bill Continues The Improving Access to Clinical Trials Act of 2009 , which would

Goin' on a Lung Hunt.

Not a lot of time on the sched. before I leave for Cleveland Clinic tomorrow to get myself on another UNOS list. I am so very excited. I made this video to show you :)

For Eva, Breathe Freely

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Eva, in a beautiful artistic pose. We lost a wonderful young cystic gal this week. Breathe freely, Eva Dien Brine Markvoort . She was a wonderful poet, student, advocate, party gal, and blogger. In her honor, I offer you one of her poems tonight: more each day © Eva Dien Brine Markvoort 2006-2010 hugs from ted little step little bit one tiny tiny moment trying hard to pull it in feel more myself every minute need my sister need my brother my father boyfriend mother medications like mathematics adding minus food and liquids equals nausea question mark sleep sleep sleep blurry eyes trying to keep up with conversations no need each hand being massaged by friends in order to feel safe and held i am not alone then two days later i am brave brave strong kitchen breaks darkness fills the room i am ok i am ok sleep is suddenly my friend hope resounds i am not dying i am living living living more each day i am loving more each day loving loving loving more each day more each day love love love

What's Blog Got To Do, Got To Do With It?

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H-Mama^ pointed out that there is really no excuse that the New York Times did not consult me on this article :) Alas, it's a good article anyway about the function of this thing we call "the internets" on our daily CF/Transplant/What's-A-Mattah-You, lives. -CG Social Networks a Lifeline for the Chronically Ill By CLAIRE CAIN MILLER Published: March 24, 2010 A former model who is now chronically ill and struggles just to shower says the people she has met online have become her family. A quadriplegic man uses the Web to share tips on which places have the best wheelchair access, and a woman with multiple sclerosis says her regular Friday night online chats are her lifeline. Enlarge This Image Peter DaSilva for The New York Times Amy Tenderich, who has diabetes, writes a blog and manages the social network Diabetic Connect from home in Millbrae, Calif. For many people, social networks are a place for i

No-Go on Jess

So it's been a hard week of dry runs for the cystic gals. Piper's lungs were a-no-go, Jess' lungs were a-no-go. But CF Steph is kicking ass and taking names at the hospital where I go!! Piper was quite eloquent in pointing out to all of us that when it is not our time, it is another person's time. Jess was quite silly in pointing out that 12 hours after being NPO, you are a ninja of hungriness and might just feel a little bit like, "No Lungs, No Peace." That is our mantra!! No matter how many times we text it, we get a giggle out of NO LUNGS, NO PEACE. Also, "All we are saying, is give lungs a chance." That's pretty funny too. Tomorrow is my poetry reading. I am super excited and only a wee bit nervous about it. Cookies will be served. Today I had both doctors (cf and tx). Ugh. I don't know what continues to be so wrong with my brain. No matter how many times I go to the doctor, no matter how many times I think, "I will remain calm and

Jessica got the call!

Please visit Jess' blog at Jess' CF Journey and watch her video! She is waiting to see if the surgery is a-go, so keep her and the other families in your thoughts ! Update on CFSteph- She is doing well, off the vent, up and moving, allowed to eat and wrote, "I can't believe how fast this is going!" on her facebook!

Many Days, Much News, None of it mine!

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So CFSTeph got her lungs!! After a minor bump in the road, she is doing very well and hopefully was up and walking today!! Then, Piper got the call this morning but was not sent into surgery. Her wonderful, honest telling of the tale is HERE , and I encourage you all to read it. Reminds us that when it is not our time, it is someone else's time. Something good for me to remember. I have been busy as a bee getting read for my reading . I have been shipping out the books, and picking out the poems to read- so exciting! I would love input on which poems to read, so if you have thoughts on that, leave them as comments, or email me at cysticgal@gmail.com . Don't have your book yet? So sad for you! You can buy it HERE . Copies are going fast! I only have 1/2 of the inventory left already!! YAY! Here is a posting from Piper's blog that I would like to share with you, have a wonderful Sunday. -CG Saturday, March 20, 2010 Because Inquiring Minds Want to Know

The Call: It Happens

Tonight I believe that someone at my center is getting her transplant surgery!! YAY her!! In a weirdo coincidence, I got to see some of the behind the scenes (well, okay, it was in the lobby of the hospital)... and they are going to take super care of her and she will be back on her feet in no time. Moment of peace and prayer and deep deep breath to [the patient who I'm workin really hard not to name for her privacy!]. May she wake rested, peaceful, pain-free and breathing deep! See, the call can happen any time, even when you least expect it, or after you've had a really bad day! Love, CG

a new poem

this will not be included in the chap, as it is a new one. A Lonely Only Nobody Else © Mary Eliza Beth Peters , March 2010 you can be hiding in the bathroom, three feet and one door blocking and you can be alone you can be laying by your lover, midnight and your blood spilling and you can be alone you can be singing in a choir, sunday and voices raising and you can be alone everyone knows you can surround yourself with people and you are still alone everyone knows she can keen-or-cry for you and you are still alone everyone knows he can whisper-sigh to you and you are still alone people think that when you’re dying that your are not alone people say it when you’re crying that you are not alone people don’t believe that they are lying that you are not alone but you are but you are but you are and so and so and so and so what of it of it and all before it if you are reading

I'm On the Breathe Team, Baby

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This post is for Jess, who sent me this shirt, that I can't wait to wear on the night she gets her lungs!!! Jess is one of my bloggies, obviously, and I am so thankful to be on her team, as she is on mine!! My week in links: Busy week ahead: home nurse to change my port needle- oww!; pick up books from printer and mail 'em like a crazy--yay!; cf clinic appointment-um, ok; transplant clinic appointment- time to get serious about my place on the list, mf's; psych appointment to make sure I'm still sane-will keep you posted; super secret other meeting- will remain secret; and my ten minute play being presented by the f.u.d.g.e theatre while my friend K-teachie is in town. Phew. Tired from just typin that! Better go to bed. Love, CG.

Best. Nurse. Ever

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Meet S-Crushie, my favorite nurse of all time. Why do I name her S-Crushie^ using the Super Secret Cystic Gal Pseudonym Creation Calculation? I must not reveal my secrets!! I will tell you that the Crushie part of her "name" actually breaks the rules of the sacred, secret calculation because it is actually based on how I feel about S-Crushie! I have a total non-sexual crush on this gal! I have the 2nd biggest nurse-crush ever on her, in fact! She is very funny, very nice, loves good candy and good coffee, never wakes me up from naps, and even puts up with me when I am in a cranky mood. Of course I must have a crush on her! You must too! Welcome, S-Crushie! The first nurse to be featured here on CG! I hope that all of you have a S-Crushie in your hospital! goodnight (from home!!) cg

Mask Up to Meet Up

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I had the most fabulous time meeting my fellow cystic gal Amy here at my hospital! We decided to call this meeting Mask Up to Meet Up- Here are our cute pics!! Amy and me! Amy! She is smiling under that mask! Me! Also smiling! Some of you might be wondering, why are you wearing masks? Amy and I both have cf, of course, so we want to take precautions not to spread germs from one another. Particularly, since I am sick and in the hospital, and she is not. So, we sat on opposite sides of my room, and we wore masks. It was a lot of fun! We talked and talked, and we both remarked how tiny and cute we both are. I can't wait to meet Piper next. Did I mention that Piper was super jealous of these meeting? I wanted to make sure to mention that. ;) Other news- no bleeding today! But also, no chest PT or exercise other than going to the gift shop, where I bought new salt n pepper shakers, which I needed after a freak pepper cementing incident. The shakers are shaped like those honey bears

It's Finally Here! You can buy the book!

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The book will be released this week! You may now pay for your orders via PayPal. If you did not pre-order a book, you may still purchase the book while it's in stock! Interested in a bulk order? Stocking your book store? Please email patientpress@gmail.com for details on bulk and retailer purchases. PayPal is the secure way to pay online. You do not need a PayPal account to use PayPal, you can pay through it with any bank account, credit card, or debit card. You financial information is kept secure.

News and Mask Up to Meet Up

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This is a quote from the Conan O'Brien farewell speech, and it is a pretty good motto. T-shirts, anyone? This is my motto for the hospital too. I have a lot to do while I'm in here - like finalizing my proof the book, accept purchases of the book, promo the book, start a second book... (you get the picture...am I overly excited?) Also, have to coordinate travel to [second tx center]. Had a great chat with tx center PA here, one I love, I'll call her.... C-Meddie, for the town she is from and her job. C-Meddie said it's great to be on two lists and play the odds against each other. See who comes through first, make no commitments, like having two boyfriends. I said, C-Meddie, you know me so well! The other big project while I'm in here: get better! Still having some streaking, so I'm not out of the woods, or out of the jail, yet. Tomorrow! ! ! Famous blogger Amy is coming to meet me. She is going to start seeing my team here at [I'll let her blog tell you],

Still in Jail

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But worked on my book all day except for when my Muzz came to visit, I talked on the phone with my friend Lucy^, saw T-Money^, and JO came over to watch the Oscars!! Here is the new cover of my book! I am so psyched!! Health update: no bleeding yesterday, but then it came back today right before I was going to take a walk outside in the super weather. I was afraid to aggravate my angry lungs, so I did not go. Hopefully, tomorrow, I'm all clotted off or whatever and can have a normal day- maybe go home Tuesday!! That's all, homies!!

Here is What I Know

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Being in the hospital on a Friday is usually craptacular. Waiting for your bipap to be set up when you've been awake most of the night and since about 6 is even worse. I am cranky. I am sleepy. I don't think I'm allowed to sleep without my bipap. My lungs were bleeding yesterday and today, so I'm back in the hospital. Don't be alarmed. I'll call you later (note to the homies). Also, all apologies if this offends, but as the picture above shows, in my 12 years as an official adult with CF, I have yet to experience a CF Adult Clinic nutritionist who contributes a single new idea or dare-i-say conversational phrase to the process that is my hot bod. ;) Goodnight.

Patient Access Network Foundation

Here is a really great resource for those cg's out there (or cboys or transplant patients in general, or actually a whole list of chronic expensive diseases)-that are having trouble paying for medications, whether due to lack of health insurance, high copays or co-insurance, or medications being denied by insurance as experimental or non-generic. The Patient Access Network Foundation They grant temporary benefits, in some cases, while verifying your financial resources- so this is a great resource to go to for short-term /emergency aid while other agencies might be stalling you. They have coverage for CF, transplant, diabetes, and a whole list of covered diseases. (I have no professional or medical relationship with them, btw, just putting some info out there!) L'Chaim! CG

Awesome Day Today

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Today I went to Red Spot Printing and though the fumes of the old printin' press were a little hard to muster before we moved into the glass office, I had a rad time picking out the pretty papers and binding and doodley dads for me book! Then, I took my car to the awesome Tom Lyons Tires (and other automotive razzmatazz), because oh nos! I thought somethin' was wrong-o with my car-o. It was making a clunketty clunk noise when switching gears yesterday. Nothin' wrong-o, says Mr. Tom-o. (err... they looked, and saw nothing, drove it around, and say, it's okay now!)- best part: No charge. Thanks Tom Lyons!! Then I came home and received a crazy sleep outfit from my sister which I did uploadeodoe. Then I emailed my ars off with an author named Patrick Randolph about a book called EMPTY SHOES. This Patrick and I wanna have our poetry reading together. His book- about homelessness. Me book (and why am I Irish today), about waiting on The List- what do they have in common? Nav