Cystic Gal

Some of my bloggies emailed and said, (paraphrasing them all together in a lump), "Hey, CG, that was a great email you sent to your long-time colleague about your recent health changes. How do you word it when you write a letter or email at a new job?" These inquiries made me think that I could help some bloggies out and just post my version of a a formal disclosure letter. This is the letter that I give to my new bosses, AFTER I have started work, but BEFORE anything could come up related to my health that could require an accommodation . This window of time is smaller than most people assume that it is. Any person, of course, could find himself in a health-related emergency shortly after starting a new job. A person with CF, however, is at a much higher risk of facing a health-related emergency or a need for accommodation shortly after starting a new job. You don't want to wake up two weeks into a new job (a stressful time, might I add) and realize you have s

I've been told lately that there are too many long posts up and that people want a sec to catch up. Okay- so here you have it tonight!! A few brief updates: There will actually be less narrative posts, I think, in the next two weeks because I start a huge project on Monday (yay) and anticipate being busy at night getting ready for the morning. Due to my new project over the next two weeks . . . I also ! am bravely ! starting !! a morning !!! workout !!!! routine tomorrow !!!!! I'm going to try to work out in the morning, which I only succeeded in doing at Pulmonary Rehab. But I DID do it. But it sucked. But I DID do it. I think it is ultimately better for my lungs to go through that process, though it is not more gentle on them or on my diaphragm, because I have pretty bad morning cough. BUT it makes the rest of the day better. I don't know. I'm going to try it though... I'll report back. In an ideal world, I could exercise at 5PM or 6PM when I'm home before di

p.s. I found this image just googling "metaphor car lungs images"-weird huh? Note to Readers: I'm a post ahead of myself so this is the Wednesday night post. It went up, unedited, last night on accident :) Tonight, I wrote this to my longtime colleague regarding our current project and her worries that my work is getting too intense, as hers is getting less intense while she deals with family health issues that are pressing. I share it with you because: a) it contains the metaphor du jour b) it is a good sample, i think, of how to articulate quickly why I want to work as much as I can work right now c) it's a good reminder that within whatever a CFer deals with, s/he must also remember that personal challenges surround us. We can do for others what we need done for us. d) It shows that in a short time, one can become comfortable with something that once seemed insurmountable, as I have become comfortable wearing oxygen in front of my students when I need to. Here go

Another bloggy did this list, so I thought I'd take a crack at it. Shout out to Casey 's blog. Check him out! Since I first published this, other CFers have been posting their firsts. Here is one mom's account of her baby girl's CF firsts. It really shows how things have changed since Cystic Lady was born in 1976, and I in 1980: A Day In the Life of a CF Mom ; I have also updated my firsts to include their firsts to we can all compare :) Here are some of my CF "firsts." I based my list on my own knowledge and memory, though Casey, I suspect, had to ask his parents for the info. (Uh...my parents still don't know about my blog). I will also share any memories I have. My First . . . Breath- 1980 Pancreatic Enzymes- As early as they could put 'em in my formula, I think. Diagnosis- 6 months old. Earliest they could do it in 1980, I think. Daily Vitamin- Age 3. Flintstones Complete. Oral Antibiotic- Age 6 or younger. First Asthma attack- 7 years old. Hallo

[This poest has been deleted because it is included in my chapbook, "Into the East."]

Recently, I was asked to consider this question and to think about other responses from my CF community. Here is what I have to offer, so far. (Originally commented on Ronnie's blog ). If you had it to change, would you prefer to have been born without CF? Wow. What a complicated issue and complicated question. I remember getting into a fight with a family member (or two) because I was being asked this question when I was a teen, and my response was (frankly) "you might as well ask me would I rather have been born a man?" - I don't know, because I've never lived my life as a man, and I would be an entirely different person, so I wouldn't really be ME, so the question itself doesn't make sense. She thought I was being flip with her because she expected (I interpreted) to hear either "YES! I would love to be born without CF!" or "NO, it is my gift from God." I live somewhere in the middle. I know that I am "who I Yam," as Pop

I need info from other Cystic gals! I am considering getting a port (or port-a-cath, which is an entry way for IV meds that stays in a person, long term), but love my chest the way it is. Meaning, I am a boob girl. I am fine to admit it, my chest is my best asset. I wear v-neck shirts and necklaces and love love love my body from waist to shoulders. I am not interested in fucking it up. I like it. Not because guys like it (I don't have big boobs even,), I just like it for me. Always have. It's a staple of my fashion sense and my sense of femininity. Boobs and Port. Give me the info! Does it feel weird if a man hugs you with a port? Can you feel it pressing? Does it hurt? Can a man feel it with his hands? (When it's not being used for IV meds, I mean) Does it heal closed between treatments? Like if you had 3 months with no IVs, would it heal up? When you are doing IVs, how much "geography" of your chest does it take up? Is it like a PICC in your chest? Are you dest

I cannot believe there was not a full moon this week. Tonight's blog will be short. In fact, it is 12: 20 AM so I really missed Friday's deadline. Today, I stayed home sick to do my meds and airway clearance (in which I made great strides, and if your doc ever wants to show your CT, watch it. It's a great motivator for the hows/whens/how muchs of your airway clearance!). Whilst I was staying home, a man tried to break into my house, apparently to beat up another man. A "black man!" which made him yell that at me through the window, which made me think he was a) crazy b) a rapist for wanting to "hang up the phone! There's a black man!!!", c) scary scary scary. d) a racist. Did I mention that he had no shirt on and some crazy tattoos? I had quiet a day after that. Nuff said. Where IS Kyra Sedgwick when you need her? Sargeant Provenza would have been all over this. Thank god for valium, naps, friends and sleep. T-Money and J-Teach came over. They are th

Okay. So the other day I had the idea that I could write my book about CF and actually use the lyrics to the song "The Gambler" as the names of the chapters. This was the day that I wrote "Know When To Walk (away), Know When to . . . Walk." So anyway, that's my silly idea of the day. That and the long joking conversation I had with Cystic Lady, my sister, about starting a family with another bloggy CFer. She and I were joking about marrying another CFer (which others have done, I knew a couple of couples growing up in UNDISCLOSED CITY, USA), and having babies. We were imagining the headlines, and articles: Couple with CF Takes Advocacy To New Level : "We want a whole CF family!" says Cystic Gal. Ms. Gal married Cystic Homie at the age of 29, when they met and fell in love over blog. They've Gone Too Far! A couple with Cystic Fibrosis says they plan to have 19 children and star in a reality show called "19 CFers and coughing," to increase

Disclaimer: I haven't really written any sad posts. Which is ironic, because I'm usually a sad sort of writer. I like sad topics and write sad lines and my characters are sad and boohoo. But this is my only sad post here so far. So, well, here it is. And I didn't write it today, so don't go tweeting or emailing all crazy. I decided to post it on a different day than I wrote it so that it wouldn't be an overdramatic cry for help. Just a thought for out there- the bloggy world. With Love, CG There Are Nights [This poest has been deleted because it is included in my chapbook, "Into the East."]

NewsFlash! 1,000th READER!! Yay oh Yay oh Super Yay! It's DENVER, CO! Who are you?! Tell us your name!! Leave a comment or send me an email!! I want to know the name of my 1,000th Reader!! Welcome!!! Enjoy the site! ANOTHER >#1,000 NEW READER?! Click on the "Cystic Gal" banner at the top to get readin'! Or read through the archive on the left column! Or just read the left column! Lots to do on CG! THANKS FOR READING!!

NEWSFLASH! CG is now on Twitter! Follow me with username CysticGal ! I can't wait to tweet with you. I realized my dates were wrong in the Exercise Tracker! New Exercise Tracker coming! I've been at it every day except 2- both publicized honestly :) Thanks for all your support! On to the regular post . . . ************ Know When to Walk (away), Know When to . . . Walk Ok Readers. Here it is. I'm gonna give it to you straight. After 30 days of research, both bold and careful, easy and hard- here is the hard truth. I am not a runner. I am no "RunSickboyRun." I'm never gonna be one of those peeps who runs a marathon and "oh my God she has Cystic Fibrosis!!" is said on the evening news. It's not in the cards. Not this year. For the past thirty days, I've been conducting secret research, trying different methods to try to incorporate running into my workout. I was a Cystic Gal with a dream. I tried doing one minute of running every ten minutes of

This is a follow-up to my original post, The Top Ten Reasons Not to Exercise (with CF) . Please check it out if you haven't already, so that you'll understand the nature of this post. Like the original Top Ten Reasons, it will be in two parts. A) The narrative reason that a CFer thinks/says when sharing why they simply cannot exercise. B) Why their narrative featured in Part A is totally craptacular . PART A: The Reason 11. The Ultimate Rationalization: (A) I just want to live my life . . . or some other very honest, yet very dramatic statement. These might include: (B) I'm so tired of all of this; (C) People without CF don't have to work out on their weekends/holidays/birthday; (D) It doesn't make a difference anyway, I'm going to die from this disease whether I exercise right now or not. WARNING! (Part E) When pushed, the CFer may raise the stakes in conversation and exhibit hostile behavior, muttering phrases such as: When you have 40% lung capacity you ca

Today is the first day of my very horrible terrible mind-numbing fist-pounding-on-my-desk crampy did-I-already-type-the-word-terrible period. I have to go back to the couch. Some other day I'll rant about this and its Cystic connections and my diagnosis with Pulmonary Endometriosis 4 years ago. That's all I'm going to say about that for now. I have to go catch my uterus. It's falling out. CG

A special shout out to Ronnie, and thanks to everyone who read yesterday's post and commented or emailed me. I plan to add a special REASON #11 on the TOP TEN REASONS NOT TO EXERCISE WITH CF, and this will be called: REASON #11: The Ultimate Rationalization: I just want to live my life. And don't you worry, I will address it in the same (hopefully) quippy, shut-the-f-up-already style with which I addressed the other ten reasons :) I DID exercise today, so I'm back on Day 2. I did a wicked good workout today even though it is HOT out, and now I am going out! I plan to post later but I didn't want to leave ya hanging. Have Some Fun Tonight, whatever you do! And Ronnie, Friday night in the big house are my favorite. So quiet!! A little Peace and Quiet after a storm of getting settled in your room and for your " Runaway Truck Ramp ." Love, CG

"And on the seventh day . . ." Cystic Gal took a nap. It was just the day before yesterday that I wrote The Vow of the Cardio, and only yesterday that I revised it. Yesterday. The seventh day that never was. My entire reason for making The Vow of the Cardio was to break my bad habit of taking a day off from formal exercise. I do this every week. It is like a mental block or a secret desire to complain the next day or something. It is ridiculous. It is inexcusable. Yesterday, I DID NOT WORK OUT. Yesterday: I sat in the sun for 1 hour, 15 minutes while reading; I took at 2 hour long nap; I fooled around with my blog here and there and all day long for certainly an hour or so total; I talked on the phone a lot; I made a contract for a gig coming up; I started the process on getting another contract for my new colleague; I had my friend T-Money over and even actively thought, "it is a perfect amount of time to work out, while she drives over!" BUT DID I? OH NO! And my l

Good Luck With That. Love, CG

NEWSFLASH! CG revised "The Vow of the Cardio" - below! Now STREAMLINED for your reading ease. CG welcomes Readers in Hawaii!! You've been with us for awhile! How did I miss you? CG sees surge in medical community readership. Hello to medical professionals in Massachusetts, South Carolina, Texas and California!! CG revised the CG Goals!

The Vow of the Cardio . It is a promise between me and my lungs. 1. I will exercise daily so that my lungs can reach their capacity and serve me better. 2. I will exercise for a minimum of 30 sustained minutes every single day no matter what. 3. Only my own doctor himself can tell me not to exercise. 4. I will keep oxygen for for a variety of types of exercise by calling the 02 company ahead. 5. I will not "replace" daily cardio /aerobic exercise with yoga, sex, or weight lifting. 6. I will monitor my O2 SAT and heart rate diligently and work to my full potential. 7. I will not get mad at myself or my Lungs if they have a bad day, week, month, or year. 8. I will set goals for me and my Lungs, and when we complete them, I will reward us. 9. I will continue exercising my Lungs daily during a health setback. 10. I will be honest with my Readers about my adherence to The Vow of the Cardio . Make you own ten-point "Vow of the Cardio " today! Don't make YOUR Lungs

The Vow of the Cardio. NOTE: This version of the Vow will remain published, but revisions will be posted here , as I move forward with my progress and thoughts on exercise! You, too, may take this vow. Or you may make your own. It is a promise between you and your lungs. 1. I vow to provide my Lungs with daily exercise so that they can serve me to the best of their ability. 2. I vow to exercise my Lungs for a non-negotiable minimum of 30 sustained minutes every day including during religious holidays, family events, unforeseen circumstances, and regardless of the time of day, the status of my Tummy, and even when I am very sick unless my doctor actually tells me directly that I may not exercise. 3. I promise my Lungs that their oxygen needs will be met. To ensure that my Lungs will believe me, I will call my home health company ahead of time to prepare for travel, holidays, and changes to my routine. I will program the home health 02 company's name into my cell and set reminders t

NEWSFLASH! Read this article! Boomer, CysticLife, Ronnie and all the Twitterers are tweeting about it. AND, it's about ME. Well, a generic version of "about 30 year old CF Patient" ME. If we can't find ourselves in our demographic, where CAN we find ourselves?!! It's a really great article!! Growing Older with CF By Mike Bederka

(Picture a cool graph from statcounter that I cannot upload. At 7/11/09, the Readership Spikes UP!!) "Cystic Gal" sees unprecedented readership yesterday! Most Unique Readers in one day, ever!! 71 Unique Readers! Including 54 NEW READERS! WELCOME!! You guys sure like the funny posts. I'll try to keep 'em coming. And thanks to those that twittered about my blog.

For tonight's blog, I invite you to read this particular post from one of my favorite bloggers . . . The famous CF Husband! http://cfhusband.blogspot.com/2009/07/reality.html This post tackles something that has been a big issue in my life recently: "the big talk." What is the fine line in discussion with my loved ones, family and friends, about my health, my future, my plans? This is also, actually, an issue that I seem to be tackling with my medical staff right now too. They are sensitive to my emotional nature and my anxiety. In their sensitivity, I think our conversations are moving more slowly than either of us would really like. Isn't that odd? It's like being on a date where neither person wants to be there. Both people want to get up and leave but CAN'T! In this situation, both parties want to have a discussion, but don't. Humans are weird this way. Deep thoughts by CG. Goodnight!

DISCLAIMERS: 1) I am not a doctor. At all. I have two degrees in the arts. Half the time I don't even believe in Western Medicine. 2) I am teaching young children this week. As a result, I do not use any bad language or even frown much all day. This leads me to swear a lot at night. I don't know why, but it's true. The below post has some cursin' in it. Top Ten Excuses Not To Exercise with CF 1. I can't exercise on an empty stomach, and I haven't eaten something in at least . . . ten minutes. 2. I just ate so many calories, I can't exercise NOW! My tummy may start to hurt at any moment. I must lay down and wait for it to start. 3. I better not burn too many calories. I'm trying to gain weight. I will eat this treat instead of working out. All the better! 4. I will have more energy to exercise after my nap. 5. I walked around so much at work today. And that is extra hard for me, since my lungs are broken and all. 6. My oxygen is so low today, I can't

I fell off the exercise wagon this week. Just as I decided to start logging my exercise on the CG blog, poof I stopped exercising. First it was the holiday weekend with lots of socializing and, "Hey, no one else is working out today, right?" Then it was the purchase of some new porch furniture and, "This is so relaxing!" (sitting on my ass, is in fact, relaxing). Then, my rehearsal schedule changed and it was, "I deserve a nap today," followed by, "It's too late to exercise." I teach my students that if, while working on a scene, they get distracted, they lose their energy, or they feel silly and their focus wanders away, that it doesn't matter to the audience. I tell them, "It doesn't matter where you go, it just matters that you come back." I hope that the students return to their scene work after a failed moment with a larger achievement. I tell them that the audience usually forgets the moment that sucked if the moment

Congratulations, Orchard Park, New York, It's YOU!!! You are our 500th Reader. You win my everlasting love and adoration!!! Next Reader I'll track . . . #1,000! When will YOU be? WHERE will you be? WHO will you be? Number of Entries: Entry Page Time: Visit Length: Browser OS Resolution 1 July 7th 2009 11:01:41 AM 0 seconds IE 7.0 WinXP 1024x768 Returning Visits: Location: IP Address: Entry Page: Exit Page: Referring URL: 0 Orchard Park, New York, United States Verizon Internet Services IP ADDRESS BLOCKED FOR POSTIN'- CG

Reader Question: CG, what meds are you on? What do you do for exercise and etc.? CG Answer: I decided to make y'all a list. I also added this to my left hand column and will update it as I go! New Meds since hospitalization Aug '09: (other changes noted in red below) 5-7.5mg norvasc for high blood pressure, 750mg oral antibiotic cipro BID following 30 days of IV antibiotic tobramycin and 21 days IV antibiotic cephapime. Currently completing 14 days merapenim IV. some other pill that starts "cyph" which is how I abbreviate it to treat possible seratonin syndrome, (cyphohepdadine??!!- don't make me get up to look). Px Pills: Zithromax 3 x week. Mephyton 3 x week. Prilosec 40mg 2 x day. Ultrase MT 20 with food. Sertraline 1 x day. Valium as needed for sleep, anxiety. Source CF Vitamin 2 x day. OTC Pills: Vit C 2 x day. Vit B. Airborne when something's comin' on. That's right. More h20 soluble vitamins can't hurt us, right? Inhaled: Symbicort 2 x day.

I don't have 1 reader in Turkey. I have TWO. :) Yay, CF Readers in Turkey! You should have coffee or something. :)

Dear Dr. U-Bird, Dr. B-Bird, and even Dr. G-Bird, If there were a Cinnabon in Boston, I'd be fatter. Next study to fund: A Cinnabon a day keeps the Ensures away. Look into it. Love, Cystic Gal PS. More tomorrow, loyal readers. I'm tired after a day back in the rehearsal room!! And my voice is tired, too! Plus, just started back on TOBI 2x day, which is not great for the chords. They're stripped down from all the talkin and the inhalin ' and the chem chem chemicals going over 'em. To gargle, to sleep, to dream, to wake, to teach. Dramatic enough for you? cg

0 Rome, Lazio, Italy H3g Italy [Label IP Address] Cystic Gal Cystic Gal I could not make this up if I tried!! Congratulations to our new International Reader, our 400th Unique Reader, in Rome, Lazio, Italy!! Welcome, also, to Romania! Two new countries in one day! CG now read in 7 countries worldwide! Keep up the good work, folks! Goodnight!!

Happy Independence Day, U.S. of A! I have never been more proud to be an American than this year. I have never been more politically invested than this year (barring, perhaps, a year in middle school where I was really into politics which faded when I met J- hottie ^, my first love). In the spirit of this 4 th of July, Independence Day, and in the spirit of this blog, "Cystic Gal," I would like to reflect upon the ways that CF has made me a more independent person, both when I was growing up, and today. As a first point, I know that I am empowered over my body, which contributes to my Independence as a person, a woman, an artist, even dare-I-say-it, lover. From a very young age, I have felt this empowerment over my body which paused only for about 6 months in middle school while my breasts grew. This great empowered feeling is mostly a blessing, but as I grow into later stages of my illness, it is also, I find, a curse. I believe that I am empowered over my body largely b