Cystic Gal

*This image was randomly found when googling the blog title. It is so appropriate to my week! It is soppropriate. *This is a picture of me and the Beckitty in the Winter. We will remain this way until April. This has been a strange and wonderful week in the world of CysticGal. There are some things that I want to share, but cannot yet. There are some things that I want to share, but cannot – period. And there are some things that I can share. Perhaps I’ll start with those. I’ve done a few speaking events lately, and they have all been really wonderful. In unrelated news, many of my CF and/or transplant friends have been having a hard time, particularly parents of little ones. Then, there have been other things going on in my work and personal (non-blog) life. This has all made for a very emotionally confusing week. It has also made my statcounter stats skyrocket – so I feel compelled to post a post for you. Without too many details, perhaps I can revert to my old favorite – a

Good post, bad post Happy post, sad post. Iron & Wine post.   They will see us waving from such great heights "Come down now," they'll say But everything looks perfect from far away "Come down now," but we'll stay.

Hello to my new readers tonight from Springfield, Mass and also from Connecticut via Catie Talarski's wonderful blog about her docu-series! I had a great night at the Springfield CF Team event, and it is so wonderful to come home and see Catie's blog! Here it is!  http://publicradioremix.org/2011/11/1240/ The presentation at Bay State Health's CF clinic was broadcast online, but I can't find it - I will post it tomorrow. Thanks and stay tuned, Beth Peters

Some of you asked what I spoke about in Virginia at the fabulous Gala – so here are my notes! It was a wonderful event and I was so thankful to meet so many families and care-providers, dedicated to CF.   “ Starry Night in Italy” CFF Event, Virginia, October 2011 by Mary ElizaBeth Peters PIQUE: My thoughts are racing as I try to get ready for my last minute flight from Boston to Virginia. Flying to Virgnia – Hmm. I won’t have to pack too much, so my bag won’t be too heavy. I don’t need my nebulizer – or should I bring my nebulizer in case – in case . . . oh, that’s silly – well, let’s see if it fits. What kind of mask am I supposed to be wearing again? Dang, I should have gotten that flu shot. What if I get the flu? How many doses of meds should I take? One? Two? What if I get delayed? Maybe I’ll just take all the full bottles. But then again, what if lose them? Would I have to buy them again, out of pocket? How does that work, exactly? Okay – enough. I’ll take the regular amounts

My sister posted this on FB tonight, so I thought I’d share it. It makes me think about my scars, the ones I like and the ones I hate. The ones that tell my story and the ones that keep me from telling it. Before you ever get evaluated for a transplant, most have a lot of scars. Afterward, you have many many more. Scars They tell how it was, and how time came along, and how it happened again and again. They tell the slant life takes when it turns and slashes your face as a friend. Any wound is real. In church a woman lets the sun find her cheek, and we see the lesson: there are years in that book; there are sorrows a choir can’t reach when they sing. Rows of children lift their faces of promise, places where the scars will be. - William Stafford

oh look, it's me lately.  I have been absent from my blog for a long long time. I am sorry. I have been very  busy enjoying life with my new lungs! Since last I wrote, the documentary series I was working on with Catie Talarski of WNPR has aired. You can see the link to the latest episode here:  http://www.yourpublicmedia.org/node/14749 The first episode, is aired here: http://www.yourpublicmedia.org/content/wnpr/where-we-live-living-cystic-fibrosis  . The show was so well-recieved, that is has been slightly re-edited, and found its first syndication, here: http://hearingvoices.com/news/2011/10/hv123-cystic-fibrosis/ Sadly, the other CF patient that I was being interviewed "alongside" - though we never met in person - passed away.  Brian Sercus died from Cystic Fibrosis shortly after he decided to be evaluated for lung transplant, but before he was able to receive one. He died as a brave, hilarious, amazing mentor to me in so many ways. Some would say that he &qu

Bloggy Bloggy, one thing I know I’m doing with this blog- is converting into a “real” website and making it less narrative, more article-y. Check it out: http://cysticgal.com

Hi Bloggies, What up? I have been very busy lately getting back into the swing of things, which has been crazy. For those of you that don’t read the blog a lot, I am a drama teacher and general “theatre person,” so I’m one of those silly artist types that is very busy for weeks on end and then basically unemployed and asleep for others. Right now, I’m in the busy phase. June will be the month of napping. I haven’t had much time to blog for CG, but I’ve been blogging and writing other places, which has kept my brain busy.  Lots of you wonder how I’m doing health-wise, and the answer is pretty good. Since my transplant, almost 10 months ago, I have gained almost 20 pounds, I have gotten back into a very active lifestyle, and I’m pursuing some new hobbies like dating all available attractive men that meet my standards.   I only had one major health setback, when I got the flu and pneumonia – but I got better really quickly, and hope I don’t get sick again!!! Here are a few recent photo

AHHHHH Even my ding dang blog got spammed!!! I am sorry. I do NOT support berries or weight loss. My apologies if you received an email regarding berries...or weight loss. bp/ cg

Welcome to Joshland: Moganko CF Project Teaser : "I'm not giving too much away, but hopefully this will get you excited for the eventual launch date yet to be determined. I couldn't do this ..."

This blog post has been a long time coming, for sure. Every hospital stay I’ve had, every CT scan, every radiology “procedure” … ahem… surgery – had two things in common: teeny tiny me and massive triple-x hospital gown with questionable cleanliness, new-ness, and butt-covering-ness.  I became an expert at avoiding the hospital gown. When attending the hospital in May through October, I made it a policy to wear no bra, and a tube top:   MEP, June 2010 Though my tactic was highly successful, at times I was still forced to wear the yuck-gowns which were thin, freezing cold because they barely covered me, and unless tucked around me like a baby-swaddle, exposed more of my chest than this tube top, if you get my drift. After my life-saving double lung transplant on July 27, 2010, my sister received word that the Annie and Isabel company wanted to send me a gown to wear! To my surprise, they sent me two, and I wore them in heavy rotation, with my parents washing each and bringing them

I get lots of questions in my email, and I am going to start being better about posting them as an FYI... ## On Sat, Mar 5, 2011 at 11:59 PM, Tess wrote: Hi i was wondering if you had any advice on choosing a bipap mqchine.  Or living with ot!! Im going to jave to go on one soon andbrememered that.you had used one Tess ## Yes, I used a bipap for about a year prior to my transplant, and though it was hard to get used to, once I got used to it, I loved it!!! I don't really have knowledge of a lot of different machines, they are all pretty much the same, I think. I used a huge one at the hospital and a tiny one at home, and really the only thing that matters is the mask, that you get a size that fits well and that you adjust it til it is tight enough to make a seal but comfortable and not pulling at your neck.  If you doctor recommends one, I would go ahead and do it right away. You will sleep much better and the rest will be good for your body!!! -- ~Beth

It's been a weird couple of days in real life and in blogland. What is the nerdy computer monitor lady joke-- What is the difference between the internet and real life? Answer- There is no difference. This is a personal blog. It's not a professional website. It doesn't have any particular aim or mission or secret agenda. I write stuff on here when I feel like writing it, and post stuff that I feel like posting, and share stuff that I feel like sharing. One day, I shared a video of me pretending to be a fairy for Halloween. Another day, I shared my thoughts on mortality and CF. I'm just a nutso like that. So... here are my basic disclaimers (below) and I add to them these: 1) I don't really want any sort of websitey, computery, htmlie feedback. Write to the google corporation regarding all your blogger woes. 2) I won't really be addressing any sort of "I can't believe you said that, how dare you, when my five year old reads this she is going t

Hello loyal readers! On 1/27, I passed a transplant milestone- 6 months since my transplant! The greatest celebration was that on my 6 month bronchoscopy , I don’t have any signs of rejection. That makes 6 months full of bronchoscopies, no rejection so far. This is big news because rejection in the first six months to a year is the most concerning, though likely I will have some form of rejection at some point – don’t we all? Chuckle, chuckle. I have also gone back to work on a part time basis for the Wheelock Family Theatre , as well as Watertown High School, where I used to teach English and Drama. I am directing “Guys and Dolls,” and I’m happy to say that I have one of the nicest high school casts I’ve had so far . . . that is to say, so far so far. We are early in our process Other than that, I am spending lots of social time and sort of re-learning how to be busy and keep my shit together, psychologically, medically, organizationally. Another milestone- is that I have

spellling all wrong.  so on my recent bronch (6 months woot woot), they found a teeny tiny bit of aspirtghillis infection. So, I have to take Amphotericin nebs, which is you don't recall, is the nasty yellow foamy neb from right after tx, that has a weird consistency and sorta sputters out of the neb at the beginning and end and if you're not careful, it stains stuff. Have any of you taken it later after tx? for how long and what were your side effects? thx! cg

Little known fact regarding CG: I get a lot of emails. I love it! Keep 'em coming. One writer gave me permission to publish her email and my response, so here goes! (PS Thanks JK for helping me blind it real good!) Hi [new internet cf tx buddy!], and nice to hear you. First, let me say that I am sorry to hear that you have been listed for transplant, though it may be the beginning of a new life for you- so on the other hand, congratulations! Where are you thinking of listing - which hospital? I had my surgery on 7/27/10, so six months ago tomorrow!  My evaluation was a little different than most because I started the proess with an appointment and basic testing, pulmonary function tests and blood test, etc., and then I became quite ill and the rest of my eval. was pushed along more quickly. Most centers require a lot of blood tests (I had 19 viles at Cleveland Clinic), chest xray, chest CT, bone density scan, up-to-date dental and gyn records for the ladies, and an assessmen

Bellingham teen remembered for being upbeat despite illness - Milford, MA - The Milford Daily News