NHBPM Day 30 ~ Tootsie roll (horn tooting post)

Play that horn. Want to hear a secret? You’re awesome. (It’s actually not even really a secret.) This is going to be hard for you, O Modest One, but you gotta give yourself props today. Write three things you love about yourself – things you’re great at – or just want to share. Don’t you dare signpost or undercut those self-compliments!

Today is the end of 30 posts in 30 days.  Traveling kept me from posting on time (traveling to DC and getting stuck in airports, then staying with my parents whose browser doesn't work with blogger), but not from writing my posts, so I am proud of this accomplishment, especially posting in two blogs.  I found a lot of really great blogs through this, and it was incredibly timely, since I was just beginning to really see what's out there in terms of online health communities.

I love the positivity I'm finding through health blogs, but I am also impressed to see people bearing their souls because there's no way to measure the enormity of the benefit that does other patients.  These blogs represent experiences and emotions and coping mechanisms you just can't find anywhere else.  And for people with rare or invisible illnesses especially, you'll find descriptions of symptoms you're experiencing that you won't hear about from your doctor or any published resource, as they're just not formally documented yet.

The name tootsie roll comes from six year old son's recent obsession with tootsie rolls, to the point that he exclaims "TOOTSIE ROLL!!!!" when something makes him really happy.  Or occasionally for no reason at all (and a couple of times he's even used it as an expletive).

Since the thought makes me chuckle, and since I need to be not-too-serious in order to toot my own horn, it puts me in the right mindset.

My first toot is not something I can take credit for, but something I am grateful for.  I pulled this from a blog I read yesterday:

"I have chronic fatigue syndrome, the Bad kind, and it has changed and made its best attempts to ruin my life. But one must keep soldiering on. So I do, paint brush in hand." http://bealightcfsawareness.blogspot.com/

Since I don't have the Bad kind (given all the things I can do), I need to remember that each day.  I can toot my horn that I do a pretty darn good job at that.

Each of the following quotes from lobsterquotes on twitter also inspired toots:

• When we see a soul whose acts are all regal, graceful, and pleasant as roses, we must thank God that such things can be and are~Emerson
• Toot:  I am good at seeing the good in people
•  If you want to know your future, look at what you are doing in this moment~Proverb
• I am spending my time as well as I can and working at being postive now, rather than after I get better or after my health-work-legal issues are resolved

I'm finding that bullet points help, so here are a few more for the road:

• I've kept my daughter's girlscouts troop going throughout my illness
• I asked for help with the troop from other leaders when I needed it
• I've fought hard for the right to work, because I am someone who is very fortunate to be very high functioning---discriminatory responses to our illness can't be allowed to give us the worst of both worlds (people fighting for disability being told they don't qualify and people trying to work being told they can't)
• I appreciate the help and support my husband gives me and do not take it for granted (though, like any care-giving spouse, I'm sure he would disagree with that at least some of the time)
• I am determined to give my kids a more normal life to the best of my ability

To all of you participating this month, cheers to us (with whatever beverage our respective illnesses allow), we rock!

Thank you, WEGO Health, for the prompts and the energy spent toward community and hope!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
I am also participating in my Bread and Roses Blog

NHBPM Day 29 ~ Happy Bellsaversary (greeting card post)

Greeting card post

Cover:

Happy Bells-a-versary



Inside:

May the wind be always at your back (and away from your Bell's palsy ear)
May your eyes both close whenever you want them to
May you smile with both sides of your face
And may you always taste your food

Happy Bells-a-versary
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
I am also participating in my Bread and Roses Blog

NHBPM Day 28 ~ Ridiculosity: "BECAUSE HER FACE WAS PARALYZED"

Say WHAT?! What’s the most ridiculous thing you’ve heard about health or your condition. Was there any context? What did you think at the time you heard it – and what do you think of it now?

                   

If ever the investigator for my EEO case were to read this blog, I would not want him to feel badly about this story.  This is just another 'one of those things' about being sick, and something that will amuse me forever.  I know he meant no offense, and I am finding him to be a detailed and thorough kind of person so far, which would make up for much, much worse than this commical story.

This is the story as I posted it in my favorite Bell's palsy forum under the title, "How could your bosses tell you had Bell's palsy?"

This is HILARIOUS to me.

I had my investigatory interview for my EEO case today and the investigator was asking how my bosses would have known I had bell's palsy. There is a question as to whether I provided a doctors note early enough, blah, blah, blah (I did, though).....the point is that after explaining that my eye was stuck open, the right side of my face didn't move, only one side of my mouth was talking, drooling, tearing, etc., I kept getting the question.

Finally my lawyer gave it a shot.

He spoke very, very slowly and said, "because....her face....was paralyzed."

He wasn't disrespectful to the investigator, just very, very slow and clear. It's all I could do not to laugh and it just cracks ME UP....which I just can't explain to regular people right now.

But I think in ten years I will still think of that moment and be very, very amused. Now there are funny answers coming to mind that would have been fun to say....but not very legally prudent.

And this is a picture of me during the time that was called into question (and my supervisors could easily have vouched for me, just from seeing me try to talk), although I'm more improved in this picture than when they saw me:

It's equally ridiculous that my bosses' boss told me that "I really didn't look that bad at all" with a tilt of his head and a change in his voice that sounded a lot like, "you looked just fine, so there was really no need to take all that time off."  But I don't like to guess what other people are thinking, so I'll never know the actually relevance of his statement.  But among the ridiculous things I've heard in regards to both Bell's palsy and CFS are:

• If you can travel, you shouldn't need reasonable accomodations
• If you are too tired to come to the office then you are too tired to work from home
• Certified letters to your house during sick leave that include the first threats of discipline in your career even though you did nothing wrong "shouldn't be stressful for you"
• This doesn't make sense to us (after so many explanations and no clarifying questions, this necessarily eventually translates to, "we don't believe you")
• You probably just need to exercise more (I know people mean well, but its hard not think, "you probably shouldn't just blurt things out about medical conditions you're not familiar with")
• WHAT HAPPENED TO YOUR FACE??!!!!!  (this one was actually nothing but hilarious, as it was a close friend who doubled over in shock as she asked the question, having just walked in on me taking off my sunglasses and saying "argghh" while showing other coworkers the full effect)
• Well, you didn't get sick until October 18th (um, really, because the paralysis started in May (though I didn't say it like that)--to which the woman replied, well, the form I have says October 18th, so that's when it started---huh, ok, thanks for setting me straight there, lady.....good thing you didn't apply any pesky tact to your statement or it might have been confusing for me (that wasn't out loud either))

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
I am also participating in my Bread and Roses Blog

NHBPM Day 27 ~ Quote Unquote

Grab a quote from this site (type in any word – see what comes up!) and use that quote to set you writing. Quote Unquote.

My search term

discrimination

My 'grabbed' quote

Comment by Jenn on September 18, 2009 at 3:24pm

Beka.. awesome for taking on this battle!

I have friends who have told me their stories of being fired from work due to dystonia.. one sued her employer, but only won her job back.. she opted for disability and severence because the hostile work environment was not worth it... Another didnt even try.. because the symptoms were not worth the stress.

For someone of your stature in the dystonia world to take on this battle it will help those of us who arent able to fight against the discrimination that comes withy rare disorders. I wish you the greatest strength.. and thank you because even though this lawsuit is about you its for all of us!

Why I 'grabbed' it

The risk of fighting to protect our rights, for those of us with serious and rare disorders, practically make our legal protections null and void.  Ther is not protection in real time, meaning that a person is very likely to lose their health while trying to save their job.

It is awesome every time someone does it.  And I'm not saying this to toot my own horn, since I'm in a legal battle, too.  I'm saying because each person that came before and did do something about it makes it that much more possible for me to get a fair outcome, whether or not I ever see the how and why and connectedness.

A disabled veteran with lymphoma (from shots he recieved as a military medic) that I met this week told me that he couldn't fight what was done to him, but that he went to war so I could fight what was done to me.

That's one hell of a statement.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
I am also participating in my Bread and Roses Blog

NHBPM Day 26 ~ I still remember

I still remember… Free write a post that starts with the line "I still remember…"

I still remember

Frozen hair in Fairbanks
Steering my bike through snowmobile mounds
jumping aside for dog sleds

Soaked to the core in Bellingham
bike grease on all of my jeans
people from all of my lives mixing together

Dust in my lungs in Great Falls
Baby clothes and diaper genie liners
leaving hunting season blood soaked clothes and boots at the door

Smoke in my pores in Concrete
Nomex over stinging gnettle
My belt wrapping around me twice after our fire seasons

Overnight calls in Darby
running the ambulance from the ranger station
search and resucue calls overlapping lynx survey routes

Angry squirrels in Kalispell
jumping off the roof of our first house
distracting me from my thesis

Falling in love with Hungry Horse
trying not get too attached
Finding out my family had been there for three generations before me

Driving through Columbia Falls
knowing it was perfect for us
aspen and mountains framed in my windows




This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
I am also participating in my Bread and Roses Blog

NHBPM Day 25 ~ Never Have I Ever (been a pirate in Boston in the fall)

Day 25 ~ Never Have I Ever. You stick to your guns – now tell us about what. What is something you’ve never done but want to. What’s something you’ve never done and won’t budge on?

I couldn’t decide which direction to take this, so in the end I absolutely couldn’t help but quote veggie tales.  Here are the words to a great song, followed by a link to the song on YOutube.  Enjoy!

Arr, arr, arr, arr

We are the pirates who don’t do anything
We just stay at home and lie around
And if you ask us to do anything
We'll just tell you we don’t do anything

NHBPM Day 24 ~ Nalukai (Brutus) CFIDS Mascot

My Mascot! Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?

This one’s a little too easy, given the title and topic of this blog.

But rather than a characterization of a turtle, I would use an actual sea turtle as a mascot/turtle.  Meet Brutus.

This is Brutus at Laniakea Beach on Oahu.  Brutus appeared in two or three blogs in early September, when I saw him twice on shore.  I get the feeling he’s a regular and that he spends quite a bit of time in the sun each day that he comes.  Each day volunteers place ropes around sunning turtles and for any turtle they’ve seen before and have information for they place interpretative cards. This a closer view of Brutus’ sign.

Clearly, he uses the energy he has very well and spends his down time well, too.  These are a few shots of Brutus’ daily views while he rests on Oahu.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
I am also participating in my Bread and Roses Blog

NHBPM Day 23 ~ To Keep My Hair

NHBPM Day 23 ~

Traveling for the holiday and again finding myself without internet.  Maybe Starbucks?  Or maybe a neighbor without a locked wifi signal?  We have wifi at home, and so do several neighbors, with very few people password protecting their internet.  Either we’re just not computer safety savy or we’re not as concerned about sharing something that will cost us the same either way.  So I’ll be stacking up posts again until I can post them.

Today’s prompt is ‘Health Activist Choice’.  I choose hair.  I’ve lost 2/3 of mine.  Which I’m not thrilled about.  It could be worse.  There aren’t visible clumps missing and seems like it may be slowing down.  But I’ve had a lot dreams about losing the rest of it.  Especially before being a bridesmaid.  Although even in those dreams I willed it to not fall out until after the wedding.

NHBPM Day 22 ~ Intoxicating presence

The NHBPM prompt today is about being present and showing a scence descriptively:

So the 22nd post – describe something with as much sensory imagery as you can. It can be scene (a peaceful one is what the original prompt said). What are the sights, sounds, scents, and feelings? Feel free to draw upon a particular story or moment or place that means something to you. Use lots of description and “show” instead of “tell” for this blog post.

On October 22nd I was standing in the shade between incredible women in my friend Cheryl's life.  We were controlling our giggles today, as compared to our unfortunate lack of self control standing in the same position at rehersal the day before.  Cheryl's sister and law and cousin, behind me, had been the worst initially.  Judy, in front of me, did well until I asked her if my boobs were crooked, at which point she and I were no better.  Especially when we let the other three bridesmaids in on the challenges I was having with the bra cups that some of us were considering using with our bridesmaids dresses.

NHBPM Day 21 ~ Ekphrasis!!!!! Illuminative liveliness

Today’s prompt is to do an Ekphrasis blog post.  “Ekphrasis” is writing about another art form. Like when people write songs about paintings or write a poem based on a dance. From wikpedia:

Ekphrasis has been considered generally to be a rhetorical device in which one medium of art tries to relate to another medium by defining and describing its essence and form, and in doing so, relate more directly to the audience, through its illuminative liveliness. A descriptive work of prose or poetry, a film, or even a photograph may thus highlight through its rhetorical vividness what is happening, or what is shown in, say, any of the visual arts, and in doing so, may enhance the original art and so take on a life of its own through its brilliant description.

Mine are all photos and videos of other art forms, mostly by me with a few by my 12-year-old daughter, Katie.  This topic is a lot of fun.  Though it's very easy to underestimate how much time it can take to make media sharable (my morning has gotten away from me).

Ekphrasis One ~ Sea Turtle ~ Portrait of a painting
*photo of an outdoor painting near an art shop in Haleiwa on Oahu

Infusing some humor (finger hostage) ~ #NHBPM Day 20

Today's National Health Blog Post Month prompt is to describe an event or something else that made you laugh.  A few things quickly pop to mind.

Recent Christopherisms (my six year old):

In DC, our first night in our hotel I found his shirt hanging from the ceiling fan. I ask how it got there and he says with a straight face and shrugged shoulders, "I really don't know.....somehow it just GOT there. Something must have happened to it."

#NHBPM Day 19 ~ “Best of” post: Turtle Medicine, part 1

The prompt for today is to repost a post from your archives.  I don’t know when I’ll have a good internet connection again to post, so there will be at least a couple of days worth of posts coming through together for both blogs.

“Best of” post. Grab a post from your archives and repost it! Add a few sentences at the beginning to frame it. Why you chose it. Why you liked it. And why it should be shared again.

This wasn’t my first post, but it was very early on, before I’d really gotten started.  I was so moved by the experience that I had to write about it, though I knew I couldn’t do it justice in words.  After seeing the turtles I described in this post, I kept finding linkages everywhere between turtles and healing.  I still need to retrace my steps (in books and online) so I can track those linkages down again and finish describing at least some of what I found.

Turtle Medicine, Part 1

#NBHPM Day 18 ~ Comment as a blog post

Today we're on our way home from DC and I still am not going to have a reliable internet connection, so I'm getting this started in hopes of posting later.  We got a connection long enough to check flights, but not long beyond that.

That also makes it difficult to sift through the health blogs that have inspired me.  So I may do this one again later in the month.  I do remember my first comment, though.  It was a blog about blogging, on  a post discussing common novice mistakes---all of which I was making at the time (and I'm still making several).

I really enjoy this blog, Marian Schembari (Cutting through the BS of social media.  Less zen.  More king fu.); her content is high quality, her tweets are fun to follow, and she just plain cracks me up.

#NHBPM Day 17 ~ Let it be

Today I don't have internet consistently, so I may have to wait to post this, but today's prompt is: 

Let It Be. What’s something that bothers you or weighs on you? Let it go. Talk out the letting go process and how you’re going to be better to yourself for it.

I’m challenging myself to keep it short or to keep it positive.  If it’s both, that’s even better.

I’ve been teased for dwelling since I was teenager.  I like to turn things over and make sure that I’ve figured out what I need to about a situation and have resolved it as much as I should or can before setting it aside.  I’ve always envied the ability of people around me to just not think about something, or to at least act like they’re not thinking about it.

I can’t set aside my work situation until things are legally resolved and I’m earning a paycheck.   And letting go of past details is particularly challenging during the investigation period, because I have to recall facts and dig through past documentation.  But chewing on it when I’m not directly answering or digging is going to get me if I’m not careful.  I want to keep this recovery going and not slide backwards again.  So I am resolving not to dwell on the people or the past involved in this situation when I’m not engaged directly in the process.

I would love to find a quote or a poem, but my internet just isn't lasting long enough.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
I am also participating in my Bread and Roses Blog

#NHBPM Day 16 ~ Little Engine

Today's National Health Blog Post Month prompt is the little engine that could, and today's picture, below, is my kids at the Smithsonian next to tone of the nation's oldest steam engines.  It used to derail a lot, but look....it's still here.

NHBPM Day 15 ~ What I am (theme song)

Long time theme song

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
I am also participating in my Bread and Roses Blog

NHBPM Day 14 ~ How to be a duck, part 3

I'm traveling as of yesterday, so day 12's National Health Blog Post prompt (a tutorial on something you love to do or are particularly good at) took three sittings (and internet connections) to get down.  It also morphed from monitoring Harelequin ducks to being a Harlequin duck.  Which would be fabulous (they have impecable taste in mountain-stream-habitat).  It's cheesy and it may not be all that readable to the average patient, but it has definitely been cathardic for me.  I haven't seen some of these pictures in a long time, but have them on this hard drive.

NHBPM Day 13 ~ How to be a duck, part 2

Yesterday’s prompt for NHBPM was to teach a class; to post a tutorial on something we do particularly well (and/or enjoy, as far as I can remember).

I posted a few pictures yesterday of Harlequin ducks (and a black bear that happened by during a survey).  I couldn’t finish the post because I just haven’t had as many spoons to work with this week as I’ve had most of the time over the past few months.  At the moment, I’m finishing on an airplane from Kalispell to Minneapolis.  Appropriate that I’m migrating east to west, as Harlequins do (as opposed to most north/south migrations).

NHBPM Day 12 ~ How to be a duck, to be continued

Teach a class. What’s something that you’re uniquely great at and could teach a class on? Write the tutorial in a blog post. Bonus points for images, links to resources, and video.

I can't give a full lesson today, but I'll share some pictures as a teaser.  We had a service unit campout for girlscouts last night.  I came home and unpacked, then packed for a trip to DC.  Staying up later than this to type would be a mistake.

I did find some of the photos I wanted to share, though.  Monitoring Harlequin ducks was one of my favorite parts of my job.  This poster (I made this for posting at all of our river access sites and certain trailheads) give a little bit of the why's and the what-to-look-for's, followed by some pictures from a fairly eventful five minutes of survey the summer before last (between Bell's palsy and CFS diagnosis).

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
I am also participating in my Bread and Roses Blog

NHBPM Day 11 ~ Small town health

Today (11/11/11)  the post prompt for NHBPM is to write about what works well in your community.  I'm speaking to the healthcare aspect of the question.

Living in a small town means the my options are limited.  Fewer specialists and fewer types of specialists, meaning it can be harder to avoid stigmas about an illness like mine.  Endocrinilolgists here "don't see" chronic fatigue syndrome patients and the rheumatologist here that does....well, I don't think he fully "believes in" this disease.