Posts

New Blog and Site

Yo Old Friends!  It's me, Beth Peters / CysticGal  / the artist actually known as Mary ElizaBeth Peters . I am moving on from this blog (though it will still stay up as an archive for me) - new contact will be posted here:   https://www.maryelizabethpeters.com/post/the-everyday-survivor  I hope to see you there! Love, Beth

The Long Doctors' Appointment, It is an honor to meet me.

I had a long doctors' appointment today and it did not go well. All of my shit came back shitty. Except some of my blood work was good. So that's good. "I've got that going for me," as they say. I don't want to get into the details of what went wrong at my appointment or what's going wrong with my health. Instead, let's focus on the toll these long demanding appointments take. I was trying to calculate in my head, how many of these high stakes, invasive appointments have a I endured over my lifetime? I am almost 40. So the minimum I would say is 80. In the time just before and after my transplant, most times I had to go to the doctor at least once a week. So, let's add another, say, 24 appointments there. Right now, I got about once a month, 12 more appointments. During my leave of absence this year, I had 17 appointments over 25 days off. The math goes on and on. The math is just as exhausting as the appointments are so let's just say I ha

Is this thing on?

I am thinking of revamping and reviving this blog in the service of some writing projects. Are your there, audience? Leave me a comment and say hello. CysticGal BethPeters
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I am sad. I miss my cat. Moving is hard. I miss my family.

Carry On

So, I chose last week to proactively address my high stress level, which pretty much landed me in the ER last Monday afternoon, just before the bombs went of in Boston. Suffice to say that I have not lowered my stress level at all this week. And I don't want to write trite phrases about how the world is not a bad place, and most people are good, or Bible verses for you (though I do feel all of those ways right now in addition to a million other ways.) Here is the thing I am going to cull from this week into this discussion about stress - big leap or not. Tip #2: You cannot control the world around you, or the people around you, or the way that those people interact with that world. And something else - you cannot control your feelings either. You can only control your actions in response to your world, these people, your feelings. You should feel the things you feel, and let yourself work out what to do  with the feelings, when you are ready and fully able to work out wha

Stress Buster: Long Time, No Blog

I am trying to cut the stress in my life in a more aggressive way. Uh oh, aggressive is a stressful word. I am trying to cut the stress in my life in a more aggressive pro-active way. I will share with you one thing I did each day to cut my stress. The first thing I did was email my friend Chicken Patty^, who knows a lot about stress-busting, to ask her advice. She told me, " Stress, to review, can be mental, emotional, physical, infection, blah blah blah, you know the list. Make your body happy- keep the food & hydration consistent (hunger & dehydration add metabolic stress) and sleep as much as your body wants. When you're not sleeping, rest. Put on your big robe and pet your cat, do the things that put you at ease. The cortisol levels can shoot up fast, but It takes a few days to get them back down." So, the thing I tell you first in order to bust your stress: STEP 1: Cut a hole in box. Reach out to your smart, healthy friends. (Health can be menta
  If people  wanted you to write warmly about  them , they should've behaved better.” - Anne Lamott

International Readers, "Whaazzzuuupp?"

129, 884 !!! Some of you may not know that Cystic Gal enjoys a healthy international readership. Today, alone, I have readers from Vietnam, West Africa, Germany, Hong Kong, Canada, South Africa, the UK and Australia. WOW. I wonder what I wrote about last time that drew so much attention!  Some other night/week/time of great energy, I will publish a better post about my stats like I used to. But here are some interesting, recent facts: The international readers as listed above! The most viewed post is still "Florence Nightingale Syndrome: What Can it Do for YOU?"  The second most viewed is the page for the entire month of my actual Transplant, July 2010.  The third most viewed post is "About CG the person and blog."  Most readers come to my blog thru:  1. Google Search for me! 2. My gal mycfjourney.blogspot.com 3. Blogger itself refers readers to me. Most people searching for content, find my blog by searching for: 1. "T

Top Ten Things I Expect

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1. If I have an appointment with a doctor, I expect to, at some point, however brief or fleeting, see an actual doctor. 2. If I have been sent all over creation doing expensive and invasive tests, I expect that a doctor will review them with me at the appointment for which I have cleared my schedule, traveled, finagled and paid for. 3. I expect that if a physician is not available to see me, I will be informed, and have the opportunity to cancel the appointment, and that my insurance will not be billed as though I did see a physician. 4. I expect to see a physician whose name bears some resemblance to the name I submitted to my insurance company and primary care physician. A close resemblance would be preferred. This would help me help you keep up the facade that you are actually seeing all of the patients that the insurance companies (and I) are billed for. 5. If I am asked to do any invasive tests, I ask that they are thoroughly and accurately prepared, and that I am not

Cystic Gal: Cliff, Put Down That Hoagie!

Tonight I came upon this old blog o' mine and realized- the problem i have right now is NO DIFFERENT than the one I had before transplant. And it gives a shout out to Dr. U... so, enjoy! xo, cg Cystic Gal: Cliff, Put Down That Hoagie! : You might be wondering, right about now - What does CG have to do with HH (Dr. Heathcliff Huxtible)? Well, I'll tell you. "Cliff," as we all...

Random Blathering (not really about CF or transplant or really anything)

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My sister's favorite posts are the ones when I write a bunch of random stuff that comes to mind and so for sister, I say, here you are: My high school English teacher posted a poem today by Charles Bukowski that brought back a lot of memories for me of old friends and old times and mostly of learning to write in a stream of consciousness in my high school English class, maybe because I hadn't written like that before, or maybe because I didn't know that's what it was or what I ought to be calling it.  I remember that Kathy always wrote much more metered work than I did, and she still does, and I still don't  . . . know how I feel about that. Here is the poem that Mrs. A posted:   Hemingway Never Did This by Charles Bukowski I read that he lost a suitcase full of manuscripts on a train and that they never were recovered. I can't match the agony of this but the other night I wrote a 3-page poem upon this computer and through my lack of diligence and practice

My Top Ten Causes of Stress

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Scary pictures of birds stress me out.  My last post made me think about things in my day that acutely stress me out. Here is my list from today. In other news, I spent the weekend with my bff and came to many realizations about my stress and anxiety level that have already made my dealing with stress better, as I try to make some concrete decisions about what I can control in life to lessen my anxiety. Oh yeah, here's the list: Top Ten Stresses for Me, Myself and more Me.  1. Waking up late. 2. People being loud for no good reason. Literally, I don't mind loud laughter or loud talking. I can't stand yelling, slamming, or generally loudness with negative motivation. 3. People swearing for no good reason. See above. 4. Not being able to sleep when I'm supposed to be sleeping, but being sleepy when I'm not supposed to be sleeping. 5. People calling my on the phone who I don't know to talk about something I don't care about. 6. My ho

Top Ten Causes of Stress

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These crazy pool noodle women came up when I searched for the title of this blog.  So.... #1 cause of stress: multi-generational noodle-based water aerobics?  This list of TOP TEN CAUSES OF STRESS is from a random internet place, but I found similar lists all over so I'm not going to cite it. Here is what I think about stress: I need to reduce mine but I am not sure what is causing it because it seems that everything is causing it. So, here is a top ten list and I'm going to comment on each item as an exercise in trying to figure out my personal stresses. My thoughts are in purple.  1. Self-criticism.   Tame your inner critic (that’s the part of you that shakes a finger at you). Focus on your strengths and forgive yourself. I don't think I have this or do this. I am not very critical of myself, but I would say that I am overly critical of the world around me which is probably more like #9 below.  2. Powerlessness.  Don’t believe you have no options. Open you

Stress and Anxiety: an elusive duo

I tried just now to write a coherent post about how my stress and anxiety level are so high right now, and I am having trouble controlling them. But that's all I really have to say about that. Goodnight.

Poem Drafts-o Post-o, more Iron and Wine

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Ryan Kelly reminds me that Sam Beam is "both 'The Iron' and 'The Wine.'" I found another poem that seems to have preceded the draft I posted of "My Body Remembers" a few weeks ago. It seems I wrote a lot of poetry in the year 2010 that I do not remember at all now. I can only assume that I wrote most of it while on drugs (legal drugs) but who's to say? I remember nothing. This poem I found, I will not publish because it is even too personal for this blog (I think I can hear my bff gasping across the city, "It cannot be true!"). I will copy the repetition for you: but i'm not dead or dying, i'm a living breathing person with miles left to swim I think it's a pretty good poem, and if I have some more energy another night, perhaps I'll edit out the scandalous bits and then put it on here for you. Although, it will only be half as interesting after that. ;) I think it's interesting that I cou

What is wrong with this picture?

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I burst a tiny blood vessel in my eye. The school nurse says, "It was probably the sneezing." Sigh. I am afraid of Visine, Claymation, and puppets that look human but aren't. My cat is meowing in a high pitched kitten voice which makes me think she is getting more Deaf. The kid from the Beastie Boys died and that is oddly sad for me and I can't tell you why because of privacy. Eli Manning is really annoying on SNL. I saw Guys and Dolls tonight. I freaking love Guys and Dolls. What's in the dailiy news? I'll tell you what's in the dailiy news. Rhianna cannot sing. Either can I (lately) And I cannot wait for summer. This is all the news that fit to print. More substantial post to follow.... cg @bethpeters on the tweeters.

"If I Were In Charge of the World"

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When I was eight, my mom bought me a book for my birthday called If I Were in Charge of the World (and other worries) . It was a children's poetry book that I still have. She wrote "To my little girl, who worries so much," and she put a heart sticker on the inside, too. My mom called me tonight and reminded me that I have always been a person who gets most stressed when I have too much free time, or when my schedule is unpredictable. I have always been this way, since I was very young. I remember that when I was a kid, I would also look at the calendar in the kitchen to figure out when summer would be over, because I actually did not like summertime that much. This makes me wonder if we ever really change our ways. This weekend, I had to surprise and wonderful evenings. The first night, I went to Thai food with my dear friend and then we went to a bar near the Symphony and might have secretly made fun of Symphony people. Secretly. The second night, I went out

Flip Flap

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from hyperbole and a half:  Thanks so much to all of my readers and new readers who messaged me about my last post. It is interesting that when I post poetry drafts, they usually get a bigger response that formal poems that I think are "done." The feedback also gave me a chance to read some of your similar posts, either those that stemmed from mine, or older one that you chose to share with me - about the issue of post-transplant and return to work and relationships, and general identity crisis blah blah.  Here are some of the things I have come up with in my two days long reflection: I am feeling a little bit better but it has come to my attention... ahem...wonder if you are reading... that perhaps I'm jumping into both "work" and work a little too much right now, and that is making these issues worse. I wonder if work is making them better. I wonder a lot of things.  I like to be busy. I like to have lots of projects, and I have trouble turning do

In memory and celebration, Brian Sercus

Brian, I was honored to know you so briefly at such an important time in our lives' journey. You changed me forever and I will never forget you, never stop thinking of you, never forget what you told me. I am drawn to stay up all night writing a letter to Brian, my friend, my brief friend, who I knew not as well as those who mourn him properly. I am mixed with emotions. I wonder how much of my current emotional state is delayed emotions from the last 18 months that I spent either struggling to live or struggling to prove that I was "living" - and now that I am clearly doing both - many emotions are releasing. I wonder what is delayed and what is real.  Today, a new transplant patient's mother writes to me, a woman I do not know, about her son who I do not know, [he writes this,]: >> Swollen >> Tired >> No appetite >> Sad >> Trying to process the death of the donor >> Bruised >> Stomach aches >> Dealing wit

Top Ten Totally Superficial Ways to Feel Better

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Wow, I thought I looked better in that photo but it only the tiny kitten that looks better, and even she looks pretty miserable. Get it? Blind kitty "looks" miserable. HAHAHAH. Today I took my staycation to a whole new level: Retail Therapy. Which I discovered was actually cheaper, per hour, than actual therapy, which really got my medical-spending, spreadsheet-building wheels turning. Remember when I used to write lots of top ten lists?  Well, here is one. Top Ten Totally Superficial Ways to Feel Better 1. Get a massage. 2. Get some sun, or if you are outlawed from any form of Vitamin D that doesn't come in a tiny blue capsule, congrats! You have CF, and you also can go sunless tanning. oooh..... 3. Shop for a new "little black dress." 4. Visit a totally girly store like the one I did, The Fairy Shoppe, in Boston. Buy something girly and fun. 5. Eat an ice cream. Yum! 6. Buy a piece of jewelry. I got new silver earrings with gold bases that

"Thanks, Joshy" or "I Spent My Hopes and Dreams at SuperTarget" (Thanks Katie)

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This adorable pic will minimize the random tragic nature of this post  and my current mindset.  It has been a harder month that most in CF land, and I am not immune to this. It's been a particularly hard week for me, for no particular physical reason. And tonight, I read this: http://www.welcometojoshland.com/2012/04/unknown.html#comment-form which was posted by our good friend Josh at Joshland.  Josh does not usually post anything too dark or serious, and this post is a bit of both and it also has a sort of poetic brilliance about it that has inspired me to write a little tonight about my own feelings. Thanks, Josh. So here is what's going on with me. As most of my readers know, I have pretty bad anxiety, and I dealt with it pretty well before my transplant and then even better for a while after my transplant. Lately, it's been much much worse. I think that I am now physically healthy enough to deal with a lot of the things I did not deal with, emotional

To blog or not to blog, that is the question

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 Hello, Tiny Bloggy . I am pretty sure that I have used that title before, perhaps even two times. Lately, there have been a lot of transplantiversaries of a lot of my friends, and also, a share of sad events from our transplant community. Anniversaries of deaths, new diagnosis, etc. As these issues have cropped up, I realized that a lot of my bloggies from a couple of years ago don't blog anymore, or much anymore - and of course I am one of them. These non-bloggers. A lot has been going on in my CF advocacy life this year, including speaking at a few events and starting to plan an event for my former/current CF center centered around THE POWER OF TWO movie that Ana and Isa made - all very good. I have started a couple of non-health writing projects, I left one of the theatre companies I used to work for and have moved on to working for two others, and things have solidified a bit at my "day job" teaching including planning a new program for the summer. YAY.

Most Influencial Bloggers . . . What Do You Think?

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http://www.cliohealthcare.com/winners_media/2010/pr/pdf/401000796_1_supporting.pdf Today my girl Amy and I discovered that we, and many of our bloggies, have been named in a list of 12 CF bloggers as most influential.  They conducted a new-media study during 2009/2010, and the results were published more recently. I was happy to review this listing because I think that it, on the whole, accurately describes the sphere of influence that some bloggers had. I DO NOT like that Novartis / CLIO Healthcare made up a "fictional patient" which I most likely interacted with. I think that is just unethical and ... weird. So, look at the study - what do you think? Note that my statistics as listed in the report are quite dated. xo, cg bp

Hey, thanks!

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Guess what I got for Valentine’s Day?   I got a bloggy award from my friend Amy!  She has a great blog at http://www.mycfjourney.blogspot.com . Amy encourages me to write more often – or like, at all – so perhaps I shall. Bloggy life has changed for me a bit, I must say, now that I am back to teaching full time. I feel a little less apt to put it all out there than I did before. However, just last week I did a guest lecture for my friend’s AP Bio class and it was awesome – and I showed them my blog an the NPR interview and all the other internettie stuff at the end of the lecture, and they loved it. It felt great to teach kids the science of CF along with some real-life anecdotal stories. It is always a big learning experience for ME to remember that there is so much that most don’t understand about CF, and so much that is in some ways illogical when we first learn of it. In other news, how about those new drug approvals? xo, cg

Loveliness and Weirdness

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*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

Balance

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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, 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

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