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 have had hundreds of days like today. And yesterday. The day I prepare for the appointment by timing my meds with an actual buzzer so that the levels will be exactly right, the day when I don't drink alcohol but push a lot of water, and don't eat anything too fatty so my kidney and liver functions will be as normal as can be. The next day I wake up an hour earlier than I need to do a nebulizer treatment so my breathing tests will look as good as they can, I lidocaine up my arm with a patch so the blood work won't hurt too bad, I skip breakfast and morning meds til after they check my levels, and I leave for the hospital hungry, tired and already needing 1/2 an ativan to get out the door.

I have my blood work done and unless it's Lilly, the phlebotomist I like, I get a passive aggressive lecture about how I must have bad veins, transplant patients have had so much work done, cystic fibrosis patients are always dehydrated, they hope they can find a good one. They don't believe me when I tell them I have good veins in my right arm and bad ones in my left from bad phlebotomists like them that tore up my arm trying to get a PICC line in when I was 19 and too naive to kick them out of my hospital room. I haven't gotten a line in my left arm since 1999, but that doesn't stop them from trying. They get their 5-10 tubes of the good stuff from my right arm tap, and I move on to a chest xray.

My chest x-ray goes mostly like yours or anyone else's except there are old notes in my chart about all the superbugs my old lungs had, and all the times my chest has been opened, and the superglue they used to put my lymphatic system back together after they cut it and it gushed into my chest cavity- so I get ushered back quickly with a mask and a gown and the students gather around to look at my film and the radiologist says something like "It's an honor to meet you." Legit. She said that once. Like I am Michelle Obama or the Queen of England.

I am the Princess of Radiology, and it is an honor to meet me.

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

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 what that "doing" will be. Some verbs come easier than others. Sometimes we just have to accept the way that we can Be while we work out what we can Do. 

We can also choose positive energies, positive thoughts, positive words, over negative intentions, images, or sensory input that is all throughout our world.

Tomorrow many of my students go back to school. I saw a few in town today and it was hard, how to speak of such unspeakable horrors? How to articulate or cause to articulate the nightmare that we wish had never been dreamt?

I like this song.

http://www.youtube.com/watch?v=q7yCLn-O-Y0

Goodnight,
CG

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 mental, emotional, physical, spiritual, etc.), and tell them you are stressed!

More later!

Your old friend,
CG

^This is psuedonym. 

 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. "Top Ten Causes of Stress"

2. "Florence Nightingale Syndrome" - Only one post. I guess it was a good one. I still wonder if the subject of the post has ever read the post... 

3. 7% Hypertonic Saline - interesting because I didn't write about it that much, and almost never took it, due to the fact that I couldn't tolerate it. 

Most people leave my site via 3 different scholarly articles about CF or transplant. I won't list them here because it will seem like I am endorsing them more than others. What did I learn? You all like to read medical articles. 

*A lot of you also go directly to our NPR interviews! 

**A LOT of you zoom in on pics of my cat. YOU LOVE THEM!

YAY! Thanks for reading everyone! So far I have a total of... 

129, 884 VISITS!!!

Page Loads	Unique Visits	First Time Visits	Returning Visits
Total	129,884	85,205		43,136

Top Ten Things I Expect

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 sent back repeatedly in a short interval because an order was written wrong or two people who are on a "team" forgot to speak to each other.

6. If someone is going to touch my body in any way, I expect that they tell me exactly what they are going to do and that it has some apparent relevance to the reason for the visit, not a curiosity related to my very long medical history or a paper they are writing.

7. If a person is going to enter my room, I expect that they introduce themselves and tell me what they do for a living, as in, "Hi, I'm Sally, I'm a nurse practitioner here." Just as you don't enter my workplace and know everyone, I don't know everyone in yours. And we really do not need to pretend that we remember each other.

8. If someone is going to call me on the phone, I expect that they similarly identify themselves and the office from which they are calling, and the purpose of the call. Just like in the rest of adult society.

9. I expect that we spend more time communicating with me than staring at a piece of paper or computer. You have had ample time to review materials before meeting with me and it is just ridiculous to watch you make phone calls or play with the computer and squint while your poor internet connection times out, then leave saying that we will have to follow up. I am here at this appointment, this is me following up.

10. I expect that I'm not given alarming news and then told that there is not a physician available to speak to me, but one will be available next week. I will be in an alarmed state of mind from this alarming news until next week, but thanks for sharing!

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)

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
and by playing around with commands
on the menu
I somehow managed to erase the poem
forever.
believe me, such a thing is difficult to do
even for a novice
but I somehow managed to do
it.
now I don't think this 3-pager was immortal
but there were some crazy wild lines,
now gone forever.
it bothers more than a touch, it's some-
thing like knocking over a good bottle of
wine.
and writing about it hardly makes a good
poem.
still, I thought somehow you'd like to
know?
if not, at least you've read this far
and there could be better work
down the line.
let's hope so, for your sake
and
mine.
Charles Bukowski

I remember, then, that Allison and Arthur and Brian and I had an ongoing joke about Charles Bukowski mostly because Arthur hated Charles Bukowski and that we once got drunk in a park and laid in the grass looking at the moon having an argument about if it was pronounced "Bookowski" or "Buckowski" and that Arthur won because we were all in love with him. 

 

I remember that this week I was shocked to learn that I had deleted a pivotal email FOREVER and that for all my sleuthing it was gone gone gone, as I tried to find it like the last left clue in the rebuilding of what had been before, to see what’s left there now.

 

I had a heartwarming moment with a few friends a few nights ago and the only way I can describe what warmed my heart is to say and really mean it, You didn’t have to do that for me. But you did. And I’m so thankful.

And for once, you would not believe it, but the thankful feeling and it’s landing spot is not the romance or the one who brought it.

Perhaps that doesn’t make any sense to you, but it makes sense to me in the place of the text that’s gone forever.

 

I wonder about cliches in life and in writing, like writing a poem about losing some text on a hard or floppy drive so that it doesn’t exist, the way a floppy drive doesn’t exist: any more.

I wonder why we hate cliches and love cliches and so we call them “universal,” when it’s all different words for the feeling of “I’ve heard that before,” and the difference is whether it bores you.

 

I wonder about the accent of e in French and if Kathy will correct it, silently, secretly, above.

I wonder if Kathy will wonder why I’m not calling her Kathleen in this blog, or if she’ll ask me to change the name or her name altogether tomorrow.

If so, I will name her Catherine. That’ll fool them.

 

I wonder about Catholic girls that change their names in youth or adulthood and I wonder about a movie called “We’ve Been Reading Joyce In Class" that my friend made in 1996. I’ve been reading (and I’m not kidding) A Portrait of the Artist as a Young Man  again, no kidding nor exaggeration to the content of the rest of this post, (which I realize now, only a few people will enjoy). I’ve been reading Joyce in class, literally, only because I found a copy and it makes a good decoy book for sitting next to a student trying to model a good reading habit while spying on them and their progress or lack.

 

A car crashed outside.

 

I like the way the Bukowski poem ends with a comment about the Bukowski poem and how it doesn’t accomplish a lot, but promises to try to accomplish something tomorrow.

I like poems that promise something for tomorrow.

 

Beth Peters

My Top Ten Causes of Stress

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 house getting inexplicably messy despite the fact that I try to keep it explicably clean. Note to self: "explicably" is clearly not a word, yet "inexplicably" is a word - which brings about the question, how can you add a prefix to a word that does not exist, and make another real word?

7. Lack of cheese in my refrigerator. General lack of any food craved within my immediate reach.


8. Pieces of paper. So many pieces paper. "Limitless paper, in a paperless world." - The Office.


9. Not being able to find parking and then regretting my decision to stop renting a parking space. Conversely, finding parking and then regretting paying for parking all those months.


10. Writing a blog post that doesn't accomplish what I hoped it would.

Top Ten Causes of Stress

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 your eyes and see all the choices available to you.

I definitely feel this way sometimes. Here is a dumb quote to explain. There was this great show in the 90s called MY SO CALLED LIFE. The main character in that show once said, "I don't really plan things. Things happen to me and pretty soon that's my life." I certainly feel like this sometimes and I seem to lack a general sense of long-term planning, though it wouldn't appear so. I tend to make decisions (mostly positive ones) rather impulsively because the decisions seem obvious, but I don't really ever take the time to value my role in the decision making process of my actual life. Maybe this is an adult-CF thing, maybe not - like, "Seriously, I'm in my 30s? What now?" - but I am not sure that is true. Hmm.

3. Perfectionism. Do your best, but let go of the elusive goal to be perfect. Instead, be perfectly human and focus on completion.

If anything, I think I am overly focused  on completion of things and not focused enough on perfection of things. BUT perhaps this is me being like #1 above. Hmm. (That's two "hmm"s in a row... is this exercise helping me?)

4. Worry. Action is the best antidote, especially for situations you cannot control. Ask yourself what step you need to take now? It can be small and may not even be directly related to the situation. Maybe it’s about releasing that energy through creativity or taking a walk.

Please see prior blog post "If I Were In Charge of the World..." 

5. Unrealistic expectations. Life can never be problem-free, but your outlook can. What expectations are you ready to let go of?

I need to let go of the expectation (that I was allowed to live within for about 2 years) that people all around me will avoid stressing me out. It turns out, the world is full of a bunch of stressed out bitches. 

6. Insecurity. Stop looking to others to provide reassurance. Build up your self-worth by doing good things for yourself and others. Listen to the part of you that knows your unique gifts and talents.

I have this. Not a lot of it, but when I get insecure it is usually directed a particular relationship at particular time (boss, best friend, boyfriend, etc.) Usually, I move on from feeling insecure around someone to realizing that I don't like them. I am not sure that this is the healthiest way to handle it. Maybe there is something to think about there. (Hmm. in a good way). 

7. Hurrying. Try walking slower, chewing slower and working at a steady, but not frantic pace. You might be surprised to find yourself performing better. This might mean fewer lattes too. Sometimes sugar and caffeine can rev the motor way too much.

I do this all day all the time. Sometimes I find myself hurrying while I am peeing at work. Seriously. WTF? I always run up stairs now that I can run up stairs (mostly because I think it's fun) but then I get to my classroom all crazy faced. I drink too much coffee. 

8. Comparing to others. This is a losing battle. The only question that matters is whether you have done your best. If this is a particular challenge for you, read #3 above again.

I don't do this too much. 

9. Pessimism. Expect the best instead of the worst, and life usually has a way of handing it to you. In other words, be willing to change “the lens” you look through.

I think that I project a feeling of positivity, and having a positive effect on the world is important to me. However, I have pretty negative thoughts sometimes and I gossip a lot - like a whole lot. If I was a cartoon, I would be one of the old hens in CHARLOTTE's WEB.  

10. Competition. No one has to lose in order for you to win. Try turning every situation into a win-win situation. And remember, there is literally only one unique you. By embracing each individual’s uniqueness, including your own, you free yourself from the need to compare.

Do I do this? I don't think I do this. I actually work best when I have "partner" - whether at work, to spend the day with, or to do a creative project with. I don't think that I'm competitive with my partners, but maybe i need to work on doing more things by myself in the workplace and social places of the world. I don't know, though. 

WHAT DID I LEARN HERE?

Hmm. Not sure. Gotta think on this one and get some sleeps,

cg

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

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 could ever write a poem that I wouldn't remember writing, however basic or unfinished it was.  

I am listening to that Iron and Wine song that I wrote about a few million times on here, "The Trapeze Swinger," hoping it will inspire me to write something at least vaguely interesting... 

wait for it. . . 

WELL! It worked but I'm not gonna post it here, I did it in Word and will keep it for a later date, when I probably won't remember that I wrote it.

What is wrong with this picture?

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"

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 for Italian food with another friend, and then we went to the grocery store: my favorite thing!

Sidenote: Going to the grocery store or CVS on a weekend night, the later the better, is my favorite thing because the store is usually waaaay less crowded and you feel like some sort of domestic goddess or saint just being in the place. And weird things happen, like tonight, a man sliced up a mango for me to eat. LOVELY!


I also slept 'til at least noon today. YAY.

So I wonder, if I work really hard, I'll even admit - I work too hard - due to my bizarre obsessive work ethic and also my apparent duel career - am I able to balance this by resting "hard?" At my core, I am a poor mult-tasker. I like to work on one thing or aspect with complete dedication, and focus on nothing else. If I am "relaxing," I also like to do that fully.

Today I accomplished...nothing. One load of laundry but ... otherwise, nothing. Isn't that good? Or is it bad?

My mom said, "I just think you have a system that makes your life work and if you don't get to keep that system, then none of it works." Perhaps she is right.

Hmm. These are my random thoughts about making life work. Thanks, mommy!

Flip Flap

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:

1. 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. 
2. I like to be busy. I like to have lots of projects, and I have trouble turning down things that I think might be either meaningful or fun. I am working on this. I eventually need to pick one career over another, I realize this. 
3. I like to be alone. Although when I'm around people, I am very extroverted, I would gladly stay home and work on a project or watch tv or nap over most activities of daily living. I am a person that likes to be alone and hates meeting men for a variety of reasons, who also likes sex (uh..with men...just to clarify) and cuddling. Some women like being single for a long time and can just give up S and C (sex and cuddling). I am not one of these people. I eventually need to pick a lifestyle, I realize this. 
4. I liked being skinny. Although I'm not really any other person's definition of "not skinny" right now, I really don't like my new bod as much as I liked my old one. I  know that my new body is much healthier than my old body, but I would really like my flat stomach back. That is ridiculously superficial. I realize this.
5. I want to get another tattoo. All of you Duke folks are getting them, and you prompted me to ask a few of my medical team people about this today. Their responses will make for another post. There are stupid health risks with most of what my lifestyle is, I realize this. 
6. I have a lot of anxiety. Some of it is logical and can be explained pretty easily by looking at the history of my life and body. Some of it is illogical and more of a physical response to some sort of biochemical psychological yadda yadda. I realize this. When it gets worse, it just gets worse, and really all I can do is wait for it to get better. I do like it when it's better, just for the record.
7. I like to be in charge of things. I didn't really realize this totally until my bff T-Money pointed out that she never saw me so nervous as when we went to Baby Class together. I wanted to teach the class. I know nothing about babies, but I'd rather teach the Baby Class than meet the strangers with their babies. I can't go through life and be in charge of ALL THE THINGS, I realize this 

Hmm. These are the things I'm thinking about lately. 
Thanks for reading the update. And for reading in general. Oh, and I'm tweeting again. @bethpeters


bbfn,
cg

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 with a lifetime of "sick kid mentality"
>> Not sleeping well
>> Blood clots in both arms
>> Weak


And I wonder about one word: sad. I wonder how patients ever really recover from the sadness they feel preparing for either transplant or death, how patients really are unable to share the sadness they feel with the world because they are meant to be so grateful and in this basic world that thinks of 1 dimensional emotions: grateful is happy - I wonder how anyone gets through it, and I wonder how I get through it. 

I discovered a poem tonight that I wrote before my transplant when I was quite ill. I must have been somewhat altered when I wrote it, as I never followd up and edited it, or did anytihng with it at all. It was called My Body Remembers. Here it is in, it's roughest form. 


This is what I wrote:

My body remembers that I am a dancer, an actress, a teacher, a climber of trees. 

My arms remember that I hug soft and kind, that I bow to the moon, that I reach for my dreams.

My body remembers that I ...

My body remembers that I am a dancer, an actress, a teacher, a singer, a climber of trees.

My body remembers that I am a shouter, a runner, a lover, a woman, a beauty, a beautiful catch. My body remembers that I am strong, and a fighter, that I'm rugged though tiny.

That I like to win.

I will be okay after my transplant, because though I am tired now, my body remembers a time when I wasn't.

My body remembers that I am a dancer, a swimmer

an actress

a singer.

My body remembers every moment when I felt free.

Walking home from school most days of 6th grade, my body learned to go one step at a time to keep up with the others.

Swimming lap after lap after lap on the swim team, and sometimes I won, my body learned to keep pull pull pulling the water behind you to get to the front.

Training my diaphragm to breath deep, deep, deep and strong and push big air out of my small small lungs and have the loudest voice, proudest voice of most young actors, my body learned to speak up.

My body remembers to walk proudly, to pull forward, to breathe deep.

My body remembers that my legs are always strong even though my heart is sometimes weak.

Backstage, gulping down water in the wings because I sweat out too much out on the stage, my body remembers that I am a performer who thirsts to get back onstage.

Standing on my tip toes for minutes and minutes and minutes in a dancing pose for a movement exercise because my body remembers that I was a teeny tiny ballerina, a movement instructor, an image-theatre maker.

***

I only share this with you to illuminate some of my thought, some of the basic thoughts I was having at that time to try to remember my identity.


In the celebration of Brian, the beauty of his story, is that he NEVER forgot his. 

bp

Top Ten Totally Superficial Ways to Feel Better

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 will not make my ears itch. I will wear them everyday until I lose one.

7.  Buy a gift for someone. I bought a math-themed t-shirt for a math-themed friend.

8.  Get your nails done! OOOH, fancy.

9. Spend some time on a rooftop place in a pretty city and take in the yummy springtime air and surroundings. Pretend you are Snow White and chat with a bird, if one happens to come about.

10. Take yourself out for a hearty dinner and a martini or lemonade.

These tips may not make you feel completely better, but damn girl, you'll look good, and that is half the battle.

Goodnight,
cg

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

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, emotionally speaking, in the year before my transplant and the year after. I am finding myself getting upset over memories from things from that long ago, or even memories of things that happened to me or around me that I haven't thought of, at all, since they first happened.  And then I get all upset and can't stop until I sleep for a long time. I also think of things, or remember things, that I absolutely ignored or left to the side prior to my transplant and freakishly obsess if I can figure out a way to clean up those messes now- even though I don't really want to.

And, like Josh's post above, I am finding myself behind the pace of my peer group - to put it randomly in human development terms. In order to prepare for my transplant and sort of as necessary outcome of my failing health, I distanced myself from most if not all unhealthy people or relationships in my life. My physical and emotional state simply did not allow me to expend the energy that it took to keep negative people or behaviors around me.  However, now I find myself in a rather lonely place.

I don't want to share too much on here about my personal life, but suffice it to say that my romantic life is not going very well and I'm faced with a lot of the issues that a lot of other bloggers have written about, and that I published poems about earlier last year, with cf/transplant/child bearing/health choice making and etc combing with DATING? It's like, are you fucking kidding me? This is a drastic over simplification of the male-female situation for 30somethings in America, and I'm no sociologist, but suffice it say that a lot of men my age really only want to be in relationships IF they want to get married relatively soon SO THAT they can have children. So, great. Yes, that's a simple version and YES, men are just as complicated as women blah blah blah- but you know what I'm saying is true, and most of my male friends admit it. In the past two years, 3 of my ex boyfriends have gotten married and were upset that I did not attend their weddings. Can I again get a ARE YOU FUCKING KIDDING ME?

I feel like my professional life is going well, while my personal life is failing. It seems like my work life is an endless series of meetings, and that it seems like on any given day, I can call a meeting together and more people will attend it than my birthday party. Something is wrong with that. I don't even like meetings - so many humans in one room talking at once. Yikes.

Anyway, this post is rather incoherent but to say that I'm not having a particularly good time lately but that I have guilt in typing this out, because physically I am doing well (with the exception of a lot of fatigue that is mostly because of my busted thyroid) - so what do I have to complain about? I also wonder if my mind/body is used to spending periods of time not feeling well - not that I'm a hypochondriac but that some part of my brain is trained to coddle myself up in bed when I need to reset myself. Maybe that's good, maybe that's bad.

I am going to try to go to sleep now.
Goodnight,
cg

To blog or not to blog, that is the question

 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.

My best friend is having a baby all on her own and we are so excited! I have the privilege of being her birthing partner, and I cannot wait for the experience. We took our first Birthing Class last week, and clearly I was the best "husband" in the place.

So, I wonder about a return to blogging. The pros to returning to blogging are thus:

1. Blogging is fun
2. Blogging is expressive.
3. Blogging connects me to lots of people at once  when there are times that I am too busy to keep up with it all.

The cons to blogging are these:

1. People tend to over analyze my blog and call me with random comments on it.
2. Since I'm back teaching now and my students are mostly stalkers, they may/may not read this.
3. Can I really commit to blogging nightly or weekly?

The reasons that I am pondering coming back aboard are that I am having a lot of post transplant issues, from a social/emotional/brainy perspective. My health has been mostly stellar (except that I blame every stomach problem I have on the fact that the new enzymes all blow), but I have more anxiety now than I did before my transplant. Hmm. Then again, I have more going on now than I did before my transplant.

Also, I like to have a venue upon which to publish pictures of my cat.

Thoughts?

Most Influencial Bloggers . . . What Do You Think?

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!

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

*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 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

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.

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. 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