Journey Beyond Survival

Grumpa thanks for teaching me how to spit watermelon seeds. And for fighting in the Pacific in World War II. Thank you for your service. I hope someone kisses you today on that endearing bald spot on your forehead for me. Grandpa, I'm sorry that your service was so hard for you. I wish we had known somehow about your bravery. We couldn't possibly have thought more highly of you, but somehow it seems more balanced to me. You should have been honored in your life for your Purple Heart. We miss you. Thank you for your service. Hubbend and miss THANG: be careful driving back to us. We miss you! And NO TEXTING. If I text you, it's because you've led me to believe you've stopped. By texting me! Be good. Be active. Choose Fruit.

Being Sunday, I usually talk about Sunday things. This health journey is different from the others. My life is utterly and completely beyond my own control. In most ways. Before I had the illusion of control. This-of course-led to my bipolar manic phase in which I was pushed into psychosis. Pretending that I can control the world spells disaster. Remember that. When Chickadee was finally diagnosed and it was evident that I was not delusional in that regard I gave up. It was as though I'd given up the weight of the world and needed to rest. Truth is I didn't even need to feel like I was holding back the tide. Letting go has made all the difference in my life. That and prayer. I'm living in the moment now, because it's all the certainty I've got. I believe in letting go. I can't write the cliche sayings here. The ones that belong. I'm not grateful for trials. I would never ever EVER wish these things on anyone. I do not feel like we ar...

Goals: reach 10000 steps each day 5/7 get on the treadmill 30 minutes five days 4/5 sleep. as in at all 2/7 It's hard, but we're starting the cycle I get up even though I've only had four hours of sleep I keep the grumpy Chickadee awake all day the neurologist says this is just a part of Rett we have to live with So, I did so abysmally well that I think these are a good set of goals for me to continue with. HOUSEKEEPING FYI: Beansprout and I have big plans tomorrow. This counts as my post for tomorrow. Because I'm in charge here.

Say I couldn't talk .  And my hands didn't work for sign language.  Oh.  And don't forget that my body's neurology likes to get cranky.   But I have one way to communicate clearly.   Eyes .   Piercing eye contact meaning yes.  Anything else means no. Especially looking at my belly button. Say you don't know how to talk to me.  But it's your job to figure out how smart I am to determine my education plan.  But you call it some PC term-cognition-so I don't get offended.  And you throw a lot of technical terms at me so I get dizzy and don't remember to act smart. Or is it that you're not fluent in my language ?  It's not easy to phrase Every Single Question into yes and know.  Trust me.  I know.  Perhaps you don't know about my neurology's misfire.  The ones where I need to be asked to make eye contact when I've hit the animal you've requested.  Not taking my first hit as my answer. ...

I'm a dancing lady. I drink three BigGulps of water a day. Got to be bathing the kidneys baby. Cranberry juice is the feminine way. So I dance. Fumbling for keys in the wretched old purse Zipper is eating my skin and my pants Don't tell my mom if I happen to curse When my hips start to swing The door open and it hits the wall My phone starts to ring inaccessibly  and Chickadee is beginning to fall How romantic it is. To eternally know the problems caused Inheriting organs of different sizes Bladder and stomach are awful bemused For my shimmy and shake Reveal how much I've to learn from practice Repetitive deliberate quake From pretending to sit on a cactus. Do it again I say for the rest of the day One hundred times at least is best When learning to dance it's the key to say Again and again, bring on some more Teach me so when the time comes I can STOP.   *photo by DFW Mid-Century Modern*

Am I ready to work on the problems I've been avoiding and stop worrying about the ones beyond my own control? Or do I need this done as quickly as possible with as little to no pain? There are two vital differences between when I'm ready to Work on my life and when I Want my perfect life. Do I believe that: Discipline is a part of life Food is Fuel Body is a Tool Solve Problems or that: Indulgence is key to my happiness Emotional Eating Body Hatred Put it Off It all boils down to whether I'm willing to accept consequences for my behavior. Balance. Taking care of myself. Have you any telltale imprints? Juxtapositions? *photo by PowderedToastGirl*

We got rid of our television when we were too cheap to pay for cable.  I had most of our important child distraction educational videos online.  I cried a little.  But we made it through. It was hard. Then came online streaming video.   My mother had strict limits on television watching.  I still had no self control. I revel in watching what I want when I want. Given Chickadee's condition, it's been Beanspout's babysitter for quite some time during therapy and doctor appointments. Let's just say there is no POINT to my proclaiming self-righteously, "We have no TV."  We are still couch potatoes. Worse than we intend to be.  What is boggling my mind is that I am changing my life. I've lost 28 pounds yet I watch videos on the treadmill.  I sit and blog.  I surf the blogosphere and siphon off inspiration from others.  Yes, it helps me not eat.  Yes, it keeps me very busy. But, I want a different lifestyle.  I want to j...

"Don't step on it!" Beansprout yelled.  I just about peed my pants, but obliged. Beansprout has become the Keeper of the Catepillars. When I was out gardening in my beautiful flower bed, he just about drove me crazy. Punctuated with the occasional, "LOOK OUT" my afternoon was peaceful, getting in my last annuals and stepping back to survey the fabulousness every so often. I even learned to capitalize on his exuberance.  "Yo Beansprout!" I point my spade, "Your friend there is eating my plants!  You better get him off my plants!" the lovely little boy would oblige!  Worked every single time.  He never got tired of it, and I should know because I tried it a lot of times. He was vigilant in taking care of those plants catepillars. Why am I telling you this?  I should post this on my personal blog right?  Of course.  But the reason I bring that up is this:  he was vigilant!  He attempted the impossible. You know and I know...

Today I'm teaching at Church . I'm supposed to be profound about this  talk. Somehow I consistently overestimate my ability to deal.  I should probably start preparing the same day that I teach. Then I might get it done in time for the next motnh! Anywho. I'm praying I have something to say.

Lucy from "Diminishing Lucy " is having a challenge. It's a fairly simple one and broad in it's goals and requirements. It's perfect for me to anchor myself with and pull myself up and out of this stalemate maintenance mode.  So my goals until Thursday are: reach 10000 steps each day get on the treadmill 30 minutes five days sleep. as in at all I feel like I can do these things. And that when I do I will be able to move closer to being mentally ready to handle weight loss again. So basically it looks like the biggest things I feel to be in my way are: exercise and rest. Interesting... maintenance weight: 197.2 +- from yesterday: +0.2 Come play with us! It's fun.

Who knows why when one kid gets sick the others start circling the drain?  We were going to the library.  I was supposed to exercise Thursday morning. I'm hoping Friday I will get it done.  I just can't control my kids.  Fevers.  Excruciating Gastroenterology. Sheesh. I mean, I just want them to sleep through the night, and let me walk away to go to the bathroom during the day without crying.  Or screaming.  Or spilling water all over the floor and slamming fingers in the door.  What is the game plan.  I think everyone should post their best theories of how to get it done. My best theory is drugs.  Yes, that would do it. This is exactly what I was hoping this blog would help me through.  The rough nights of sleep and the medical issues.  The family needing more than I can give.  Sweets sucking the life out of me. So, as part of my maintenance I am going to post my daily weight. Thursday 199 TOP maintenance weigh...

Tuesday night 10:30 Fail at getting to bed until Wednesday 2:30  Chickadee throwing a party 3:30 Party still going strong and sounds like fun 4:30 Hubbend gets tired of me sticking the binkie in and talking sternly 5:00 time to wake up! 6:10 got 3 miles of walking in 7:10 missTHANG off to school 7:30 off to Big City for Neurologist appointment 9:00 time to feed Chickadee breakfast driving 10:30 time for Chickadee's drink driving 11:20 appointment time! conclusion: no seizure meds! 12:00 time to go home *phone dies* 1:30 time to stop for lunch 3:00 time to give Chickadee another drink 4:00 home Hubbend unable to help call babysitter Hubbend a bit brusque (at this point all it takes for me to be hurt is a look) Charge phone, call sitter and she's annoyed I'm at home Don't take the time to explain or be defensive Find out her current location (long story) 4:20 missTHANG has to feed Chickadee nobody's happy 4:50 pick up the Beansprout 5:20 ...

In late 2005 I discovered something that helped me to  Raise my Metabolism  while being able to  eat more .  Of course, it was still a sensible plan but less restrictive than my weight loss phase.  It was also due to more than lifting weights and building muscle. It may sound too good to be true, but I've had really good results with it both to finish my last 20 pounds in 2006 and also when life has been too hectic to really pursue my goals  this time around.  How?  Well, let me illuminate: Eat more Weigh daily Set 5 pound cap Reaching cap means weight loss phase diet Set 5 pound low Reaching low means eating more Maintenance phase 'successful' when Low can be maintained 10-30 days at 'eat more' phase The basic science is that our bodies reach an equilibrium state where we seem to be able to maintain in spite of minimal increases or decreases in diet.  Some of this is due to increasing muscle mass.   The Queen of Muscle Mass ...

I remembered something yesterday that's been helping me a bit. I couldn't handle my life BEFORE I went to Stockholm.  Why should I expect myself to be able to get a grip on things AFTER ?  Mum handled things so 'perfectly' according to my interpretation of things, that I naturally expected to handle it well too.   I mean, I have so much more practice! The other realization that I made is disappointing.  Somehow, I have been in denial that I need a maintenance phase in weight loss.  I'm doing pretty well, and I'm dealing with a lot of ghosts too.  Like  THESE  and  THOSE .  I just want to keep pushing. But, given the fact that I have a few extenuating circumstances  I owe it to myself to be careful.  If I try to be too perfect at a time when my mind and body is trying to tell me to slow down, I will pay.  Not only will I gain oodles of weight, I will swing manic to try and handle it.  I need myself sane. So r...

It's Sunday.   Time to get some perspective. Regain some purpose. What keeps you focused? *photo by kaurageous*

I got on this morning and tried to post something.  I couldn't quite get it. So I read a few blogs.  I found: Exactly What I Needed So, I'm sending you there for some Ooomph that I really needed!  Check it out, it's really good today. *photo by H a n n a h *

Okay, I am spiraling out of control. Maybe not beyond help.  But, this is really bad.  Did you know that jetlag + 5pm + church brought dinner + sugar in the house = Oh yeah. Sugar High. My weight is hovering around the low from before.  And by hovering I mean fluctuating a pound or two above 194. Ish. Yeah, I need to reign it in.  I need to be exercising.  I'm hoping this jetlag will be over soon. It's KILLING me. *photo by snippy.snippy.crab.kris tine.* *photo by BryanElie*   *photo by SugarPressure.com*

My most embarrassing moment because Mrs Fatass shamed  me and my previous acceptance  from Skinny Sushi  was a poor excuse for embarrassment. From peeing my underwear at prom to having to having my doctor tell me I wouldn't have eczema if I just used lotion-there are more embarrassing things in my life than a toddler yelling at me while I barf. So thanks to Helen at Doing a 180  for giving me another chance to be embarrassed!  She is working very hard at her fitness journey, and is more committed than most people I know.  She is persistent, consistent and optimistic. and F. McButterpants at To The Best of My Ability  for also giving me this award !  She is incredibly funny and persevering.  She has a lot of fun and works out her problems honestly.  I'm very impressed. So, for the most embarrassing moment.  Well, for many of you this would not have been embarrassing at all.  But, I was not lying when I told someone I woul...

So freakin tired. *photo by Diana and Bart-Willem*

Yesterday I created my favorite dinner for my mother.  It has black beans, cooked with sauteed garlic and caramelized onion.  On a bed of rice cooked with cilantro, lime, onion and a dash of salt.  Believe me, this alone is to die for! Next there is the pork that is slow roasted for hours in a special slightly sweet concoction that eventually culminates in a lovely toasted color.  I think my favorite part of all of this is that all this is placed on a bed of salad and topped with a touch of dressing and pico de gallo.  The dressing is-of course-my favorite. It is made with jalepenos and an entire bunch of cilantro making it green and a bit spicy.  I like to put crushed red pepper on top too.  Silly-I know-but it counters the sweet pork and cuts through the fat in the dressing. As you can tell all this takes quite a while in the kitchen.  Plus my mother made her famous cookies.  This means that Crisco has once again found it's way into my...

It's been difficult to not be able to read all your emails and make my way around the blogosphere.  I miss you all.  It seems silly that cyber space is such a real place to me, but honestly it has changed my life. I was unable to move on, to concentrate before.  I was wrapped up in the grief caused by my daughter's regression into Rett Syndrome, and before that in shock and denial over my psychosis and diagnosis with bipolar NOS.   Not only had I gained a significant amount of weight, I had also become mired in a quagmire of thoughts that were unable to crystalize.  I was unable to take the time to sort those thoughts out, and let them leave my mind.  It seemed I needed a place to store them. This bog has really and truly become a security vault for my thoughts.  One that has allowed me to move on and continue through my life.  Be it fun and hilarious or devastating and melancholy.  I really do appreciate all of you sticking with me and c...

  She bought out the entire top floor of our hotel. The entire place is in an uproar.  30 bags, Security at the entrance. Paparazzi outside and helicopters hovering. She followed us to a fancy department store. And got us kicked out of the cafe where we were getting a nice hot cocoa and a bite to eat.  The whole place.  The staff came up to us and asked us to kindly leave our comfortable quarters and move into the more stiff and public place.  We grumbled and did as asked. Lady Gaga.  Poor woman.  Stalked all the time and afraid to be recognized.  I walked past her a couple of times, I'm sure.  But I didn't even whisper it to Hubbend.  The girl had a stricken look when I recognized her.  Either that or it was one of her staff that was afraid of being fired.  Either way I feel for her. I hope that she is still in awe of traveling, admiring the many splendors each place has.  Not getting tired of the ...

Don't panic.  I have to explain.   This is NOT me. No yelling. This is a happy place. We do not yell here. They have much better lighting. I tried to take a picture,  but you can't see the detail. So I'm publishing the  Nordstrom's online pics. Besides. My VeryCloseRelative wants  desperately to remain anonymous. The one that was my bipolar lifeline. I've mentioned them too much. And it's more than my identity at stake. I WILL publish some.  Just with some photo shop... ...like a maze over my face. bwa ha ha ha! Tonight is the night. I'm meeting with all the bigwigs and titans of Hubbends industry. I think I'm supposed to schmooze. Didn't he realize that... bipolar NOS rett syndrome dealing with bajillians of doctors ...those things make it hard to care what people think? Just kidding.  I like 'em. They're all right for bigwigs. I'm off!  Wish me luck.

Dear Friends, It is surreal to be floating down the Lilla Värtan-on the Stockholm Viking line no less-in a ferry. With slightly-if not entirely-inebriated French, German, Italian, Swedes and Dutch. Add into that equation a folk singer on a guitar and it just gets awesome. A real Swedish smorgasbord with herring three different ways, salmon, mushroom omelet, a real holiday feast for Sweden.  Hence the word smorgasbord.  See!  I speak Swedish! But they were singing American/British songs. Hey, Hey Baby! Always Look on the Bright Side of Life Country Road (take me home West Virginia) So weird. They knew these songs better than I did.  Really.  They kept looking over at us-sober-Mormons to see if we Americans were having fun.  We were.  It's a good thing I DON'T drink.  Because I can get pretty 'happy' without it.   I'm having so much fun. Wish you all were here! P.S. I'm being very good.  Wearing my pedometer, running...

           Where am I?

I feel like a girl getting ready for prom. That's had three babies and been married for almost ten years. So, Monday night Hubbend came sauntering into the living room where I was happily listing out what I wanted to get done before we leave on our trip.  He casually mentions, "I got an email today telling me how to dress." Okay.  No problem. Hubbend hedged.  Now, this is a problem and I immediately became suspicious.  Because when Hubbend beats around the bush, it means I am not going to be okay with something.  I've been planning on buying a top or two, but I feel like my wardrobe is fairly decent. "Business meetings, blah blah blah, Casual attire, blah blah blah, BLACK TIE..." I think the world stopped for a second. I have garbage bags in my purse in case of poop explosions.  And teething vibrators that stop Chickadee's raspberries.  I also have a massive key ring so that Beansprout can ride his bike in many locations.  My feet hav...

She can make bread from scratch and grind her own wheat.  She has for the thirty years I've known her.  She's the best baker I know, including the uncle who bakes artisan bread everyday for a living. When I came home from school, I haunted her with long regaling stories of my soap opera friends.  They weren't all that interesting, I was just obsessive.  I tried to figure out the psychological motivation behind everything.  It must have been so boring. In elementary school she used to draw pictures on my lunch sack every day.  On Valentine's day there were stuffed felt hearts in our coat sleeves, boots, and backpacks.  On Halloween there were popcorn balls and sugar cookies.  On birthdays there were posters celebrating all over the house.  We doorbell ditched our neighbors regularly with goodies. She had dinner every single night and she talked to us.  We did spelling and multiplication memorization.  High standards, good hard...

Twenty miles this week.  One helping.  Fruit and Veggies.  Eighty to Ninety Six ounces.  No Sugar in PRIVATE! Except Hubbend's exclusive brand. I've seen some goal lists for May out there.  What are you guys doing today? *photo by Philo Nordlund*

We girls had a slumber party last night. Chickadee, miss THANG and I. I read Anne to them until I fell asleep. Chickadee begged to stay with us, And then she begged to leave. I'm feeling much much much better. A VeryGoodFriend let me spill my guts. Even though her life is brimming. So many comments and a few emails of help. Which got me thinking. Every single one of us is being tested. We are all striving and it is equally as hard. But, we have Help. It's all worth it. Life is beautiful. I believe we're doing what we're meant to do. *photo credit here*

Chickadee is worse. Thursday night she started falling over when sitting. She started taking 5 minutes to turn over from her back and get back into kneeling. I've been an absolute wreck. BEFORE is back in full force. I allowed movie night tradition to become soda, ice cream, oreos, pizza. Yes, I had salad. But I was completely and totally out of control. Numb. I didn't care. I weighed myself Monday and I was 194. Today I am 198. Four pound gain in five days. I'm pretty sure I earned it. Just about. Okay one pound might be water from all the sodium and another might might be TOM. Again, I wasn't phased. The thought that crystalized as I stared at the scale was this: I wish it was more. Wallowing, sabotage, rebelling, filling a 'hole', addict, despair, NOTHING describes what is going on in my head. It's too deep, wide, and turbulent to name. I prayed all day yesterday. I loved your comments. I've been trying to find somehow somew...