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!

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 vitamin K. Things I don't take every day but need to have on hand if an issue comes up. I take this thing everywhere!

Perhaps a picture would help me explain.

But anyhow, as the day goes, I empty that middle container. I am careful not to take pills that don't go well together, like iron pills and antibiotics. It is handy to have those pills right there connected to my enzymes so when I eat, I can take some other pills if I need to.

That's my system- and hey,this'll now be my blog for tomorrow!

www.cysticgal.blogspot.com

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 seven year old. You regard me like a nuclear grenade and you are a soldier required to throw me, not able to decide which direction. I will walk into the room and you will cautiously shake my mother's hand, oh good, you brought your mother. You will wonder if I am a child or if I am an adult and you will remark that you are not quite sure how I was assigned to be your patient, you will smile and then ask me casually to review my "full medical history." I will stare back at you, where should I begin? I ask this literally, you think I mean figuratively, and I start to tell you how I was born in 1980. Why were you diagnosed?, you will ask me. Any surgeries?, you will ask me. You will ask me strange questions like how did I come to have this disease if neither of my parents did, if I ever worried about my cholesterol since I eat "so much fat," if I am bulimic or have a history of it. You will look at my fingers over and over again and you will hold onto my skinny wrist. I will wonder where you went to med school and how you ever finished and know that the answer is simple: barely. We will spend the better part of thirty minutes working over my history, I will watch you toggle frantically from the notes you are typing to the notes you have received about me over the year. I will remark that you must not have ever read them, and you will deny this is true. Of course I have read them, I am your physician of record. I have written all of your referrals. I am in charge of your care. Of course, I will reply. Of course you are. You are in charge of me. I will smile politely and after bringing you up to speed, after telling you about my 29 years of life, after noticing that you are about five years older than me, you will ask to listen to my chest and I will say, what for? I thought you didn't want to see me. Just kidding. And you will put your clammy little hands on my gorgeous chest under my thin cotton shirt as though it really makes it easier to hear, as though what you hear in my chest will change everything between us, and for that penance along with the drive and the talking and the two oxygen tanks I have wasted, I will walk out with a piece of paper from you that says I am allowed to live.

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, but I don't do many of my meds at home. I can't keep doing this, I want to live a long life, and this isn't helping. I feel like crap, when I wake up I DREAD coughing because I know that I will be bringing a lot of stuff up..and many times I end up throwing up because of it. I have zero energy. I get out of breathe going up the stairs... At PE Thursday we I couldn't even run a full lap..I ran 1/4th, after that I felt horrible. What is wrong with me? Why does my mind not want to do these meds? I get so frustrated with myself..but I have no willpower.
>>

MY CG Response:

I hope this young woman in reading your comments, and I think you gave her some wonderful advice! I want to key in on one point she said, (paraphrasing) "I'm afraid to start coughing."- a lot of times, the truth is, doing treatments, coughing up stuff, getting out of breath in exercise, all of it- is painful, scary, and can even feel life-threatening. Even I am in a high stakes negotiation with my team about how many times per day I can do "forced coughing" maneuvers to bring up junk. It makes my 02 drop to the 60s and is very stressful on my body.

My point: looking back, I realized that this fear of the pain and panic associated with coughing fits was causing me to avoid them AT ANY COST. There were times in my life when I would avoid ever exercising around other people (including walking to my car, walking to a meeting at work, or pushing myself in rehearsal.) There were times when I did not formally exercise at home for weeks because of my fear of coughing. There were time when I avoided my medicines because they would make me cough so hard. Sounds great- right? Get through each day and cough LESS?

The problem: Avoiding coughing and specifically the admittedly gross, sometimes painful, usually exhausting process of coughing up yuckies - it's like avoiding crying. You wait and you wait and you wait and then you stub your tow and cry your eyes out in front of all your friends! If you avoid coughing, your lungs will get swampier and swampier, until you will experience even worse coughing fits that you will not have any control over- which will feed your fear again.

I think it's important that you think about how you feel about coughing- if you need to be angry or sad about it- or just admit that it's freaking exhausting and plan to cough up your junk and take a nap- so that you can get to be more compliant.

I think this issue is one of the least talked about realities in CF, particularly for girls who are not as (bear with me here . . .) likely to feel normally spitting out goobers. Doctors don't even enjoy talking about it that much and very little patient education seems to focus on it in post-adolescence.

It's a gross, exhausting, unsexy, un-dainty, nasty, sad, thing.

But you gotta do it. Every day.

Love, CG

So, what do you think?

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 me $10! Awesome.

THEN, I came home and took a nap! A two-cat nap at that.

THEN, my mom and I went out for a yum yum yummy but affordable dinner! Steak and potatoes, man. Serious yum.

NOW, we're gonna get ready for bed early and watch the last bit of DAMAGES Season 1, while she drinks a "spritzah" and I drink hot apple cider. AND we'll have girl scout cookies.

THEN, we're going to bed early because we might go back to the aforementioned guest-pass-tastic fancy gym tomorrow!

3 month Guest Pass at Fancy Gym: $24- TOTAL!
Sandwich and Smoothy: $7
French Manicure: $10
Steak Din Din: not too expensive either.
Damages Rental: Netflix Trial Membership
Girl Scout Cookies: Still $3 a box.

Being a Recessionista: PRICELESS.

Be cheap. Live Large. The Economy Blows.

L'Chaim!

Goodnight!

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 doctor's office.

It was, I imagined, going to be a pretty routine clinic appointment. As I settled myself on the familiar exam table to await my doctor, I went over the specifics of this particular visit in my mind: PFTs down a point or two, might mean an oral antibiotic or some other slight tweak in the medication routine; my weight was too low, as always, so we might have to discuss the dreaded feeding tube issue once again; and otherwise nothing too remarkable. I swung my legs and fidgeted in the tiny clinic room, gearing up for what I knew was coming: the inevitable conversation about my increased need for IV antibiotics to fight infections in my lungs, and the implications of my decision to work full-time at a large law firm following my graduation from law school the previous May. It was now January of 2008, and while I sensed that things were changing with my CF, I had no idea just how much this seemingly run-of-the-mill clinic visit would change my life.

Transplant. It's a word most CFers are all too familiar with, at least as a concept if not as an actual reality. Since my teenage years, I had understood that lung transplant surgery was a last-resort option for people with advanced cystic fibrosis lung disease. I knew people who had undergone a transplant and had emerged smiling, full of life and healthy, vibrant breath supplied by their new lungs. But I was completely unprepared to hear the word applied to me and my disease, despite my personal understanding that my CF was progressing. And so, when my doctor took my hand and told me that she was recommending a referral for lung transplant evaluation, my first thought was, quite honestly, "for whom?" Because certainly she didn't mean me, the lawyer, or me, the daughter, sister, girlfriend, and friend. She couldn't mean me, the girl who loved to travel and be active and who adored her job. And then it hit me that she did, in fact, mean me, the CF patient.

It's funny how jarring news can sometimes work strange and wonderful things in my life, and it turned out that my referral for transplant was no exception to this rule. Immediately after learning the news, I began to seek out other CFers, figuring that I should get as many perspectives and as much support as possible during an otherwise confusing and difficult time. The issue, of course, was that CFers are rarely allowed to meet face-to-face because of the dangers of cross infection. A room full of CF patients might have offered me the support and help that I needed, but it would also be putting my health (and the health of others) in danger. But a chat room full of CF patients? Well, that's an entirely different story. And so it was that I stumbled into the online CF community, where I was lucky enough to meet L and others like her -- members of a unique collective of 30,000 + people in this country living with this disease, dependent on the medical advancements and new treatments made possible through the CFF and lung transplantation, and surviving on hope for a cure that suddenly seems not so far fetched thanks to cutting edge research and truly remarkable science. These were the people who helped coach me through my evaluation for lung transplant, who continue to support me as I've gotten sicker with CF, and who will celebrate with me when I finally receive the oh-so-precious gift of life.

So how could I resist the chance to come and meet one of these remarkable women in person? And when L asked me to share a little bit about transplant and my personal CF story, I was both humbled and excited. Which is fitting, I guess, because right now is a time that truly is both humbling and exciting for all of us out there fighting so hard against cystic fibrosis. There are new drugs on the horizon that show amazing promise in correcting the ion transport at the heart of the CF defect, potentially offering CFers with less advanced lung damage the possibility of life beyond this disease as we've always known it. And advancements in lung transplant offer those of us whose lungs have suffered more damage the hope that we too may soon breathe without our current limitations. Neither option is a cure, in the true sense of the word, but both paths seem to lead to a world where CF might have a new and different meaning, and all of it thanks to the continued dedication of the scientists, the doctors, the donors and the fundraisers, and the Cystic Fibrosis Foundation.

I guess the moral of the story is that all of us are, in a sense, waiting -- L and I, and the thousands of other CF patients and their families. We fight and we wait: for new lungs; for new treatments; for the chance to see our loved ones who have died of this disease once again; and, just as I waited that fateful day in the clinic office, for the news that will forever change our world.

I thought this was a fitting response to my own late-night rantings about CF and waiting, in a way. And I also understand that there are many people out there with CF who are walking an entirely different path -- those who will not receive transplants, or who are awaiting the next stage of a journey that is all their own. And I guess the question always remains:

What are we waiting for?

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!

Poet of the Week and Chapbook Release!

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 and also a lot of fun. More to come, as the waiting continues!

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!

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

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 FEV1 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 passion for writing it out (not always here or on CG, but writing in general), yet I have an underlying feeling of like, why am I even doing this? I won't have the energy to follow this through, to get anybody to read it, to edit it later even. Why am I doing this, at all?

I want to get listed somewhere else but then I think, wouldn't I just be playing the numbers there instead of playing the numbers here and no matter what, the sickest gal gets the lungs, right? It doesn't REALLY matter how prepared your body is. Right now I am very much sick, and also very much in fighting form as much as I will ever be, and yet yet yet where are my lungs?

Then I worry about my attitude in a sort of Oprah's Secret kind of way (knowing, of course, that she did not invent that theory and similarly neither did the authors of The Secret itself). I wonder, if I woke up tomorrow with a better attitude would I get my lungs? Yet, I know that my first few weeks on the list I was indeed in a good spirit (mostly because of the excess CO2, steroid, and Valium, but nonetheless in great spirit). So if it was all about cosmic match of generosity to gratitude, I would have matched up then. In fact, it is more of a match of DNA strands, which I cannot control. But just in case, let me set the cosmic record straight: I would be amazingly grateful to receive lungs from a donor who is lovely and loving enough to give them to me. I have prepared my body and to the extent that I can, my soul. I have a bad attitude, but this attitude will indeed help me take care of my lungs, my body, and return to my life that, whether self-aggrandizing or not, I believe is worthwhile to other humans. I don't want to have to type, "Think of the children!" - but oh well, I already typed it.

So just to be clear, cosmos, I would be a grateful and trustworthy caretaker of a gift of life. Cranky and expressive, perhaps. But these are only two of the tools I have developed in taking care of myself, and the other self I hope to receive. And for the record, the cosmic record, I am only cranky about that which pertains to me personally in this struggle, and dearest cosmos, I think you would agree, that is fair.

Love, CG

Sunday, January 17, 2010

What I'm Learning About Relationships

I always figured (like most) that personal crisis (i.e. my illness, transplant, dying) would bring out the best in my relationships. I don't know why I thought this - if it's the way it's depicted in movies and books, if it's my Catholic upbringing and the secret belief that everyone is working from the same spiritual playbook (which of course we must not be), or what- but I must have been counting on this time in my life, more than I ever should have, to clean up the mess that is the personal relationships in my life.

As it turns out, my personal crisis of health is just bringing out the worst in my personal relationships.

Or should I say, it is polarizing my relationships. Some of the people that I feel most at ease with, that are the most appropriately supportive of me, and who I feel that I can truly count on, are my newer friends and people that outsiders (my family or older friends) would never assume I would count on. While others, I feel, are failing me.

I am lucky, blessed, thankful to have my mother. Other people do not have a mother like my mother- and even fewer get along with their mother in the way that I do. I adore my mother and we get along like peas and carrots. (My gramma always used to say that). I know my mother will be my caregiver and frankly, put up with me, in whatever way I present myself.

This post is meandering, but I like it. :) Love, CG

NOTES MAGOTES:

**Patient-Specific, Time-Varying Predictors of Post-ICU Informal Caregiver Burden: The Caregiver Outcomes After ICU Discharge Project Chest January 2010 137:88-94; published ahead of print September 17, 2009, doi:10.1378/chest.09-0795

Friday, January 15, 2010

No Number Romance Poem

[removed by CG, but included in my new chapbook!]

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 DVD this week. We are all about this show.

I am starting to worry about money. I look down the road and I begin to worry, more and more, about the "when" of getting my lungs. When I first got on the list, rumor had it that I was in "a good spot on the list," and now that I've been on the list more than 3 months, I worry that this was not the case, or is not the case, any more. I have no way to know where I am on the list. If I somehow found out today that I was number 1 on the list, that could be different tomorrow. People are always coming and going from The List. I have to believe that my lungs will come at the best possible time. But, I worry that the time is NOW and that tick tock, they are not yet coming.

I wish I were back at work.

I miss the theatre.

I *think* it misses me. :)