Life teaches, Love reveals

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A smile

Strength is Happiness

Travel medicine June 2012

My doctor hypothesized early in my illness that warm weather would help me if I felt good enough to travel.  My husband had his summer airline second job by then, so we tested it with a trip to Hawaii and though I spent a lot of time in the room resting, she was absolutely right.  My turtle trips started last year, and I slipped in a very brief one this year (a couple of weeks ago.  My friend Jenny, in some of my turtle pictures last year, happened to be on Oahu the same days as us.  This first photo is the kids waiting in the ocean while I talked with Greg about flight options for getting back.

What I look like when I listen (a few reflections on my face)

An Eric Gillet photo from Cheryl's wedding rehersal

I like this picture.  I posted some of Eric's pictures of Cheryl and Miguel before their wedding (he took their engagment pictures, which were amazing, and his work is captivating, to say the least).  In chatting with him before the rehersal, I told him I have a special nack for ruining pictures, and he saw first hand after not realizing how serious I was, that I do have an uncanny ability to close my eyes and contort my face as a shutter closes.  The above photo, though, I like. 

My face was tired a lot that weekend and there is a fair amount of asymmetry in my face in other pictures, and now in general, even compared to earlier in my recovery.  I also discovered that I have no control over my 'lesser' neck muscles on my Bell's side.  I don't know if this is new or if I just didn't notice all this time.  They aren't muscles I think I need for anything.  But, by the way it feels to smile these days, there may be some other muscles that are either regressing or that did not heal the way I thought they did.

Most people would never know now by looking at me that I had Bell's.  It's visible in some photos, espcially when my face is tired or when I couldn't tell my Bell's side wasn't smiling, so I didn't correct it.  In this picture, though, it is hardly even visible to me.

I don't spend time thiking about it from the perspective of outright vanity, and interestingly that didn't even bother me a whole lot when I didn't know if I would heal.  Frankly, I care more when I occasionally get a zit in various ridiculous looking spots on my face.  I rarely spend time on my appearance.  I thought about it in terms of attractiveness to my husband, though, I guess, as I healed.   But not in the way you think about your hair or acne or crooked teeth when you're a teenager and you (truly, though not consciously) believe your value and acceptance are dependent on those things. 

It worried me more with my kids and with interpersonal communication.  People responded to me very, very differently when I couldn't smile.  Responses ranged from akwardness to outright hostility.  The differences in my face now impact interactions less, of course, but there are still subtle differences, both in my face and in the way I feel during conversations where subtle facial cues are important. 

This photo captures how I feel a lot of the time around people.  Not entirely sad, but someimes at least a little separate...working at connecting.

Like many major illnesses, Bell's leaves most of us a little wiser and more grateful than we were before, but also just unexplainably different.

Today's best 'lobsterquotes'

Lobsterquotes is the twitter handle of an optimist (I'm assuming) who posts inspirational quotes.  I can't click "favorite" fast enough to save all of the ones that catch my attention. 

I had a good evening with the kids, forcing myself to breathe peacefully and FOCUS on the end of the kids movie we were watching, rather taking the opportunity to fret about work/legal matters.  And if my mind wandered there, I thought healthy thoughts about what a healthy perspective would look like.

So when I opened my computer after they both went to bed, each twitter lobsterquote came with a calm breathe that took absolutely no thought or effort, and with a calm little wave of endorphines.

These are the ones I could "favorite" fast enough to save (gems, all of them).

A contented man is always rich~proverb

To know the road ahead, ask those coming back~Chinese Proverb

If you treat every situation as a life and death matter, you'll die a lot of times~Dean Smith

Family is a haven in a heartless world~Lasch

If you realized how powerful your thoughts are, you would never think a negative thought~Peace Pilgrim

We cannot rise higher than our thought of ourselves~ Orison Swett Marden

Happiness lies, first of all, in health~George William Curtis

Kids in Vegas Part 2 (video, photos, Christopher's hat, lion king tickets, and 3 mile goal)



Katie doing math by the pool



Monday was our first full day, and we sat through the time share gig, as planned, to earn 3 free lion king tickets.  It was still worth it, but of course it went long.  The kids were awesome for the first hour and a half of what was supposed to be a half hour (not that we ever thought it would be that short).  I did get a bit agitated with this one becasue my patience with subjective math is pretty short.  But its comical to watch them turn to Greg, as if he'd be more likely to accept their creative reaoning.  Trust me people, if I'm not buying what you're saying, you lost my husband a long time ago.

Our goal was to get to the Mandalay bay to book our seats and see as much as we could along the way.  It was a lot of fun zig zagging through the crowd and looking up at everything.  Christopher's hat disappeared in the Mandalay and he was pretty distraught until we (very luckily) found it.  The kids didn't know we where we were headed or why, and Katie couldn't stop trying to get me to spill the beans.  The video below shows her face when I finally told her.  They were pretty excited to have tickets to the Lion King for Christopher's birthday (Tuesday).

We're here.....Kids in Vegas Part 1 (video)

Sunday night we made it to Vegas.  The craziest part is how crazy it wasn't to get there.  We left our front porch at 11 am and were checking into our hotel by 5 pm.  Christopher cried when we landed because I mentioned that Vegas was in the desert and he didn't want to be in a desert for his birthday.  But now that he's seen the pool he is completely over it and back to being excited.

We packed what food we could and checked a regular sized suitcase and one of our carry ons instead of taking just carry ons.  In addition to saving money on food, it was nice to have less with us from plane to plane and it was nice to be able to protect my bridesmaids dress, which made it nicely to Vegas.

We signed up for a 30 minute time share schpiel in order to get 3 free lion king tickets and free breakfast.  It will save us at least $160 and let us see a show, which we would definitely not be able to do otherwise.

If you're reading this, I'm in Vegas

So, I'm "scheduling" to post this, knowing (hoping) I will soon be on planes to warm places.  So, if you are reading this, we are on our way or we are there.  First, we are scheduled to use timeshare points in Vegas, traveling for free with Greg's standby benefits (my husband works seasonally for an airline so we can travel).

We would love to be heading to Hawaii or somewhere a little more amazing, but I haven't been earning a paycheck (though I would sure like to be) so we have no money.  In Vegas we can take a free shuttle to the strip and see fun stuff and spend lots of time together at the pool.  We are even bringing food to save money.  Then to Cheryl's wedding!  But Cheryl, if you happen to read this, wedding expenses are covered...we pre-planned and covered that by alternate means months ago.  So any fretting about money in any blog post is an entirely seperate matter!

At the moment I have a huge pile of laundry to fold for packing.  And instead of brushing his teeth, Christopher (who will be six next week) is standing with his tooth brush in hand explaining that he only has bad dreams here, but never in hotels.  The house smells like sugar cookies that Greg is helping him cook to share at school, since we will be gone for his birthday.  Katie is spraweled amongst the laundray reading "American History Revisted," a giant bathroom reader of Greg's.

Update Sunday closer to departure....

I'm updating from the Kalispell airport with a few pictures, as our first flight looks pretty good.

Heaven is a cookie

Last week Greg made 4 giant chocolate chip cookies, one for each of us.  They were non-dairy, so I could eat them too.  My first chocolate chip cookie in a very, very long time.  It was so amazingly wonderful.  I was full after 1/3 of it, but managed to eath the whole thing.  I haven't been doing all that well with sugar, but this was very worth it.

Then, yesterday, we went out to lunch for Greg's birthday at a new restaurant in town.  The panini I got had goat cheese in it.  I had it without the full amount of cheese, since this was an experiment.  I am intolerant to dairy, probably as a CFS symptom, and also casein (a dairy protein that's in everthing, even non-dairy products, because they put it back into non-dairy foods).  I seem to have done just fine with it--no noticeable stomache pain yesterday, a little bit this morning but I'm not sure its even related.

So....soon I will try pizza!  Yay!

Also, I ordered a latte, but they didn't have soy...they only had almond milk, which is soooo much better.  Their almond milk was frozen, so they had to give me chocolate almond milk, which was terrific with their peppermint flavor/syrup that they make themselves.  Plus, it took him a while to bring it out, so the best latte I've had in months was FREE!

Food is wonderful.

The picture above is a non-dairy mocha cupcake I had in Hawaii that was also heaven, though it took me three days to eat it all.

No crash this week (last week of September after Kintal Lake)

It's been a great month in terms of health.  I traveled to Hawaii with Jenni (lots of turtle blogs posted about that trip), followed immediately by a camping trip to Bowman Lake in Glacier National Park, followed the next weekend by a Girl scouts camping trip to Apgar in Glacier, followed this past weekend by a camping trip to Kintla Lake in Glacier for my birthday.  Some of the trips are covered in more detail in my Montana Momma blog.  Following a couple of these trips I caught colds that clung on a couple of times.  Otherwise though I wouldn't say I had major crashes, especially considering the level of activity on some of these trips.  I'm pretty pleased.

Top among the activities that could have caused crashes was getting caught in a storm on Kintla Lake in the Canoe.  Prior to that the level of exertion was very doable, with Greg paddling a lot so I could take pictures.  As a rain storm blew in, the wind became quite intense.  Another canoe was having trouble getting back before we started heading in.  We had to paddle really hard to make it back.  Without CFIDS it would have been exhausting.  That happened Sunday and it is now Wednesday.  If I were going to crash, I think it would have happened by now.

Crash

Having felt fairly good this week, I am very bummed to be here again....that place we land when we "crash" from over-exertion.  Two hours at the park yesterday with my kids right after a doctor's appointment?  Something I ate?  Bickering with my husband?  Writing to my lawyer?

Most likely that last one.  It's a doozy.  I sent comments on my notice to file for my formal EEO disability discrimination complaint.  Several months into the process and it still seems sureal. 

But it is very clear to me that my recent improvements have come from a complete seperation from work and finally being isolated from the needless conflict.  Today, though was a bummer....I had to put myself back into that mental space long enough to write out my comments.  And having recieved the notice last week, I've had several days now for those thoughts to creep their way in.  Today was the first day in a while that I couldn't meditate my way through it.  I thnk I was too tired by then, AND I know that drinking even part of a latte was a mistake, for the caustic chemical effects and the crash. 

It was so warm and nice smelling, and I had all of stronger latte earlier this week without much harm.  But today I should have known better.

So here I am.  Blech!

I would love it if tomorrow turned out to be a new day, rather than a continuation of this (pain behind the eyes, headache, monster-sized irritability, neck pain....no stomach pain, no other muscle pain....but I'll stop there so I don't jinx the good parts).

This hypnotherapy sample from youtube usually sets me into the perfect place for yoga, more meditation, or moving on with my day.  I love it and it has helped me a lot (though even this clip couldn't really penetrate today).  If it doesn't work, search for "awaythroughcfs" on youtube.

Renunciation

I am a novice to meditation and fairly ignorant of Buddhism, aside from sharing the generic generalizations that most of the western world probably shares (peace, chanting, an acknowledgement of wisdom and tranquility without much knowledge or first hand proof of these attributes).  The buddhist analogy for the word renunciation that I just read fits so closely with what I am beginning to experience internally, however, that I wanted to capture it before it flitted away (though I may find later that my ignorance of buddhism has led me to a peripheral or inaccurate interpretation of the concept).  I hope to experience this in a more physical sense, too, when I step free of CFS.

From an article on letting go (http://www.insightmeditationcenter.org/2010/06/letting-go/):

"We can see the Buddhist emphasis on what is gained through letting go by how the tradition understands renunciation. While the English word implies giving something up, the Buddhist analogy for renunciation, is to go out from a place that is confined and dusty, into a wide open, clear space. It is as if you have been in a one room cabin with your relatives, snowed in for an entire winter. While you may love your relatives, what is gained when you open the door and get out into the spring, probably feels exquisite.

One of the nice things about letting go into something is that it has less to do with willing something or creating something than it does with allowing or relaxing. Once we know how to swim, it can be relaxing to float by allowing the water to hold us up. Once we know how to have compassion, there may be times when we not only let go of ill-will, but also let go into a sense of empathy. Letting go of fear, may then also be resting back into a sense of calm."

There are all types of directions I could take this line of thought, but as I am regaining my powers of concentration, I feel that baby steps are the right approach, so I'll let the idea rest for now in its own form.