Saturday, December 10, 2011

Loveliness and Weirdness

*This image was randomly found when googling the blog title.

It is so appropriate to my week!

It is soppropriate.

Kitty Sleeps

*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 Top Ten List. Take these as advice / public commentary or personal reflection.

Top Ten Things Random Thoughts of This Week.

1. It is better to have a job than to not have a job. Even if you don’t need a job, you should probably get a job, because really, everyone needs to have a job.

2. The best kind of boyfriends to have are either ex boyfriends or a new boyfriends. This thought has been thoroughly researched among women ages 30-39, and we have voted. We agree.

2.5. Men in their early forties place a lot of emphasis on the role of their facial hair, and top-of-head hair, in their overall effective fashion of hotness. This is an endless curiosity to all women, at all times, because our attention to this issue begins at age 10 and lasts until approximately age 75.

3. There were too many Holiday parties this week.

3.5 When I come home late or am otherwise too lazy to cook, I wrap honey ham around sharp cheddar and call it “Cheese in a blanket.”

4. Eventually, mean people will move on, die off, or be made to submit to nicer behavior. You must help them choose one of these three paths or you must choose the first for yourself.

5. It is not ladylike to  say rude things on the streets of Brookline, Mass. This is a place where you may only give icy glares and slam the door on your way gracefully walk into the Body Shoppe, purchase an ample supply of Body Butter ™ , then brunch yourself at Zaftigs while reveling in your ladylike-ness while eating some some sort of Benedict.

6. If you are out of the house more than 2 weeknights in one week, your cat will poop somewhere she shouldn’t to punish you for being a human being.

7. Country music is depressing even when sung to an upbeat rhythm. Listening to country music may result in inappropriate texting, photo-album-looking or memorabilia burning.

8. Accidentally hitting on a waiter is never, ever worth the entertainment and may in fact result in being called for a date by a waiter. In worst case scenarios, one may end up dating a waiter.*This did not happen this week.

9. Interview clothing is really all about the panty hose and a sensible heel.

10. If at first your blog post ends up more shallow than you planned, try – try again.

Yours in bloggin’,

cg

Thursday, December 1, 2011

Balance

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.

Wednesday, November 16, 2011

Hello, Springfield and also Connecticut!

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

Thursday, October 20, 2011

Richmond CFF Event, Speech Notes

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. I should do this, it will be alright. These were my thoughts this morning preparing to fly – but also the thoughts of most CF patients on a regular morning, on the way to work, or the grocery store, or to school. These are the usual questions that pop up when traveling in the unusual world of cystic fibrosis.

INTRO: I am so thrilled to be here with you this evening, celebrating the hard work you have put in to this year’s fight against Cystic Fibrosis. My name is Beth Peters, and I am also thrilled to tell you that I am a thirty one year old woman, who has lived with Cystic Fibrosis, both before and after the double lung transplant that I received on July twenty seventh, 2010. I am a theatre artist and educator in Boston, and have spent my years pursuing education, and providing education in the arts – my true passion. I was born in 1980, a time when the life expectancy for a child with CF was eight years old. Everyone in the country was reading Alex: The Life of a Child, and every person I met, even as a young kid, looked at me and my older sister with CF - differently. Growing up with a sister who also has Cystic Fibrosis, I learned a lot about my illness from a very young age. […] Raising two children with CF – like many of you do every day – was not easy for my parents – but they wanted me and my sister to feel empowered over this part of our health, instead of held back by it. They wanted us to know that our health was very much our responsibility – like brushing our teeth or laying out our clothes for school, taking our laundry to the basement – We had responsibilities in the house to make our own lives run more smoothly. Caring for CF was just another part of that.

As I grew older, the life expectancy of a child with CF increased. When I was born, CF kids were meant to live to age 8. When I was 8, they were meant to live to 15. When I was 15, I was part of a CF Support Group that was for adults. The group was called “The Chosen Few,” – meaning that we were the chosen few who made it to adulthood. Thing have changed substantially since then, but now – at age 31 – I am still chasing the demographic that tells me CF patients mostly pass away in their late 30’s. I have had a double-lung transplant, that’s true- but this does not guarantee my survival. Even after my transplant – and sometimes more-so since, I live with the knowledge that CF could eventually take me from this world too.


MY PASSION: As a drama teacher and theatre artist, it has been important to me to teach individuals to express their stories. Living with Cystic Fibrosis- as each of us do, whether as the patient, parent, spouse, sibling or health care provider. Each of us has a story to tell, a personal story, that is also a shared story. A silent story – that is also a celebrated one. A struggle, that is also a triumph. I believe that there are thousands of ways to tell your story. In the year before my transplant, I turned to writing a blog that I called “CysticGal” to share my narratives, my poems, my random thoughts and even a little healthy anger about the difficulty of my situation at that time - what it’s like to live, and almost die, of CF. One of the poems I wrote is about the feelings behind this “battle” :


AN INSPIRING POEM:

No Dragon Slayer

I am a dragon.

I fly through the sky though heavy with wings like steel, never tiring.

I land upon the sea perched on delicate feet, never sinking.

I plunge to the deepest depth below, never gasping.

I do not need to breathe like you.

I do not need to breathe.

I am a green white pink white purple white dragon.

I float in clouds and am invisible.

I climb among trees and am a giant.

I balance on the mountain top only to witness.

I do not need to rest like you.

I do not need to rest.

I am a mythical, imaginary, remembered and forgotten dragon.

I do not fly among you, but I would.

I may not fly forever, but I could.

I will not fly in silence, though I should.

I am not defeated by you.

I am not defeated.

I am a dragon.

I hope that poem, and the poems and stories inside of you, can remind you that you are a warrior against CF – but that doesn’t mean you can’t be fragile, or lonely, or lose sight, some days, of where your battle is headed. You are still a warrior, and you will not be defeated.


CONCLUSION One warrior among us who comes to mind this evening is Ms. Emily Schaller – who was initially slotted to speak to you. I would be remiss if I did not share with you that she is absent because she is in the hospital, fighting her personal battle with CF. Emily is the Founder of an organization called “Rock CF” – which I am pleased to support. Emily and I share the goal of increasing the quality of life for patients with CF. Each year, through support of the CF Foundation’s research initiatives, we are pleased to see new treatments and studies emerge. These initiatives will change the lives of patients. I am old enough to remember the years that some of our regularly used medications were first released – and what an impact they had on my, and my sister’s, every day life as young teenagers. Knowing that our efforts – and the efforts we are making this evening – will directly impact the life and lifestyle of young people with CF – affects us deeply. We know that every moment of effort, and every dollar raised, helps a specific person with CF, with a specific need.


One thing that “Rock CF” and the Cystic Fibrosis Foundation does, is get patients excited about exercise in all its different forms. Both Emily and I are crazy believers in the importance and benefits of exercise – for her, it’s serious cardio like running and biking. For me, it’s yoga, swimming, or dance. We have a shared goal that each patient will find his or her own stride and feel confident to try new forms of exercise. Emily’s dream is to out run, out ride and out rock CF!

On a more personal note, Emily is in the hospital right now – in a position that I'm all too familiar with – one I was in just a few years ago, and then earlier this month, and then just this morning. Emily is putting her health first, above her aspirations, her social life, her personal fleeting happiness. Emily is putting her health first SO THAT she can continue to fulfill her aspirations. Don’t we wish the she didn’t have to choose one, over the other? Her health, over her happiness? Emily deserves a life that is free from Cystic Fibrosis, and so do I, and so do you, or your spouse, or your child. We all deserve a life that is full without being clouded by our illness.

Thank you so much for inviting me into your community tonight, I hope you enjoy the  Auction and have a good time tonight – you earned it!

***

Thanks for reading my speech notes, xo

Wednesday, October 12, 2011

a poem, not by me

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

Saturday, October 8, 2011

Hello World!

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 "lost the battle," but I would say that he won, that he earned, that he fought for a life worth living - and he got that life. As he said in the documentary, Brian "took the time [he] had . . . made the most of it the time [he] had . . . time with friends, time with family, just [tried] to be happy for every day. [He] did what [he]wanted to do. [He] did it." How many of us can say we truly do that?

Also since last I wrote, I returned to the theatre where I teach drama in the summers, and taught a very hectic and wonderful and zany bunch of classes. It was thrilling and exhausting and also made me feel at home - back in rehearsal with children.  This fall, I am opening two plays, one at the high school, and one at the professional theatre where I am assisting the director. It's been pretty great. The high school kids are writing their own play, and I can honestly say we are having the MOST fun I've had in rehearsal in a long time - and it looks like the play will be pretty great, too. Double bonus!

On the health front, I had my one year bronchoscopy, and I was clear of rejection and infection. YAY!

On the personal front, well . . . that's none of your business. :)

I've been happy to keep reading emails and corresponding with y'all, and please still feel free to email me at cysticgal@gmail.com - anytime. And if I don't reply right away, email me again. I don't mind. I'm forgetful.

Yours,
cg bp

Thursday, May 12, 2011

Building a new CG home!

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

CG site shot

Monday, May 9, 2011

Bloggy bloggy what to do with you?

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. Smile  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 photos:

Beth bw april 2011 (1) 

Me at the theatre takin’ notes.

101219-165653

Me at home, writing on my blog with kitty, in her helpful position.

Beth practices the Genie Fly for Aladdin

Me teaching the teeny kids at an April intensive, about flying in the theatre.

I hope to write more soon- but tell me, what should I write about?!

Beth

Tuesday, April 5, 2011

Greetings!!!

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

Monday, April 4, 2011

Welcome to Joshland: Moganko CF Project Teaser

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 ..."

Friday, March 25, 2011

Annie and Isabel and Gowns, oh my!

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:

 34933_579120316211_13001768_33822685_2256624_n

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 back to me. Even my surgeons called them my “designer gowns!”  They come in a lot of sizes, for me, very small, and so they actually wrap around my body and fit appropriately, while giving nurses and doctors the emergency access they might need with easy buttons and ties.

It was very fun to wear them and feel like a lady even on my worst days. Here are some pics:

annie2

MEP, July 2010 a few days after my tx. The gowns fit so well, you can wear a hooded sweatshirt over them!

annie3

MEP, August 2010, After a bit of a tough time, my first time outside in weeks! Sportin’ my gown for the summertime!

All in all, I really loved my Annie and Isabel gowns and I hope that lots of transplant patients get to use them. They make a wonderful gift for anyone you know that is looking at a future hospital stay, or is experiencing an unexpected one.

Thanks so much, Annie and Isabel !

MEP

Sunday, March 6, 2011

Re: Bipap- READER QUESTION

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

Thursday, February 10, 2011

Crazy-Ass Disclaimer Section

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 to shoot herself," emails. You are in charge of keeping your five year old off of my oh-so-scary website (and away from guns if I'm gonna stick with this example)
3) Be nice to me.
4) I am quite bright. Evaluate this before writing to me with any sort of a tone. I don't like a tone. Tone-less is best.

and the others....for your review.

a) At times, I use "foul" language on my f'ing blog. Please remember that you are not required to read my blog. b) I am not a doctor and I have never even played one on tv. There are days when I don't believe in Western Medicine, but I always believe in Unicorns. Use your judgment. c) Carly Simon was right, "You're so vain, I bet you think this song is about you." If I don't use your real, for real, seriously birth certificate name on here, I'm not talking about you. d) This writing is my property unless I quote something and cite it. So unless you've lived my fabulous CG Life, you can cannot steal my CG words or CG ideas or CGisms and post them anywhere. Unless you CG cite me. Yeah. e) Email me with any question at CysticGal@gmail.com f) Please do not use my blog as your political toilet. g) I am not a doctor. h) have a wonderful day.

:)

Thursday, February 3, 2011

6 month transplantiversary, and the end of Thank You Card Project 2010

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 Smile

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 lost my Thank You Card List from transplant time. So suffice it to say, that I am deeply grateful for every bit of support that I received from family, friends, blog readers, and even strangers. If I did not have the chance to write to you personally, please know that I thank you for your support, for pictures of your pets, from post cards around the world, for poem and personal stories, and most of all, I am deeply thankful to my donor.

Have a great day,

CG

Saturday, January 29, 2011

Amphoteracin

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

Wednesday, January 26, 2011

Re: A CF question from another CFer

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 assessment of your stomach acid issues in different ways. There are probably some other tests that I am not thinking of, but those are the basics, physically speaking. There is a moderate psych exam to evaluate privately if you really want a transplant and if you are a good candidate - for whatever that means. 

Do you have a port yet? If you do, the needle poking will be less, with the exception of blood gases that DO hurt but it is true, you get used to it. If you don't already, I would recommend starting yoga or a meditation/breathing program. It saved my brain a lot of trauma during my tx process.

What are your other questions? I hope you don't mind, I'm taking off your name and posting them to my blog too! 

xo, 



On Wed, Jan 26, 2011 at 10:12 AM,
Hi,

My name is [NAME] and I also have CF. About a month ago, I was told that I also need a lung transplant. Yesterday was my last day at clinic at my current doctors and a nurse gave me your blog to read. I've been wanting to talk to someone who's had the surgery done so I know what to expect.

Well, I can't really find WHEN you had the surgery done (maybe you didn't talk about everything that went on) because there's so much there. (that I'll definitely read when I have more time)
LoL

I was just wondering if you would mind answering a few questions I have.

Well, I haven't had the evaluation done yet and so I guess I'll there.

What all did the evaluation entail for you? I know there's a bit of needle poking and I'm a baby when it comes to that. (you'd think we'd be use to it. LoL)

Hope you're doing well.

Your CF friend,
-[MY NEW FRIEND] 



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