exciting stuff

(from www.eurekalert.org)
Profound immune system discovery opens door to halting destruction of lupus
Lupus Research Institute funds innovative hypothesis and scientific breakthrough

(New York, NY) A researcher funded by the Lupus Research Institute (LRI) has discovered an entirely new and powerful molecular switch that controls the inflammatory response of the immune system. The major finding, reported in the December 14th issue of the journal Cell, means that new methods can now be pursued to shut down uncontrolled inflammation, restore immune system regulation, and treat chronic autoimmune disorders such as lupus.

In autoimmunity, the immune system designed to fend off outside invaders mistakenly mounts an out-of-control destructive inflammatory attack against the body’s own tissues and organs. “We have found an essential switch that controls immune inflammation,’ said LRI award recipient, Greg Lemke, PhD, professor of Molecular Neurobiology at the Salk Institute.

In this study, Dr. Lemke builds upon findings that he and his team previously reported, when he noticed that mice genetically engineered to be born without a tiny family of three receptors—TAM receptor tyrosine kinases—developed an autoimmune illness similar to lupus in humans.

In the Cell article, Dr. Lemke now illustrates how these “TAM” receptors, under normal circumstances, are so critical in stopping the immune system from mounting an out-of-control inflammatory response against invading viruses and bacteria. When chemical messengers (cytokines) prompt immune cells to attack, he explains, they also activate TAM receptors, which then alert the cells to no longer react to the cytokines. This keeps the immune system orderly as well as relatively tranquil.

But in people with lupus and certain other autoimmune illnesses, the TAM signalling network may be seriously compromised. The switch to inhibit inflammation on this network may be absent—thereby resulting in immune system pandemonium.

People with lupus tend to have low levels of a blood factor (proteins S) that TAM receptors require to carry out their job. Giving modified versions of protein S, or its related TAM activator Gas6, to people with lupus may represent a means of halting the immune system destruction of precious organs and tissues. “This is definitely something we intend to investigate,” Dr. Lemke said.

I'm still laughing

We spent last night in Anchorage, my parents graciously invited us and it helped me get better quickly. K had a 10-hour round trip flight to some Aleutian island so he was tired.
Back home today in our cramped quarters, we had more of Mom's caribou soup for dinner, yummy stuff even if I can't really taste it. K got the kids' bedtime routine going before he went to hockey.
Our oldest child is a night-owl, and constantly reports to us "I can't sleep..." long after the other ones are out. Tonight was the same, "I'm too hot, blah blah blah" until I finally set her up with a make-shift bed on the floor.
Within minutes of thinking I'd finally closed out the bedtime epic, through the window came none other than the sound of someone's happy, carefree bongo drumming. At 10:45pm.
So I put on my shoes and coat, walked outside, stood by the idling car parked just below our windows, and asked them nicely to stop making so much noise. The guy in the front passenger's seat had a drum in his lap, but the guy in the back seat was the one who politely said they'd stop. Of course they stopped - and started right up again after I'd huffed and puffed my way back up the stairs. They kept it up for maybe five more minutes when I finally lost it and yelled out the window, "COULD YOU STOP YOUR DRUMMING PLEASE!!!!"
That was much more effective.

sick sad sack

Newsflash, I got R's cold. I had one for most of the month of November but I'd recovered before getting hit by this one. It's sort of like the flu but not nearly as bad - I can tell because this only makes me cry while the flu made me want to die.

I can't smell or taste anything, my body aches, and I can't sleep because of the coughing and pain. I went to the Native Primary Care Clinic here in Wasilla and got some sympathy, antibiotics, albuterol, and pass-out syrup. Yay!
We worked things out so that my parents could take care of R & T today while I got LittleK to and from school out here. T had another dental appointment and this time it sounds like it hurts alot more. I'll just head into Anchorage after picking up LittleK, so I can down some liquid codeine and conk out at Mom's.

Happy December

CONGRATULATIONS to the Ogles and the Renneisens!!!! Beautiful babies!!

Here we are together again!
After a couple of weeks of single-parenting, the veneer wears off in places. The kids start asking "When will DADDY be back??" as if I need more reminders that I'm the Dud Parent. I'm just happy that everybody's happy and some of the layers of stress have melted away. I guess the jet lag is wearing off because K took T to the sports complex for a run around the track.
R has a cold. He's a fountain of snot and I can't keep him from sneezing and coughing on everyone. We're just waiting, watching, wondering who'll be next to get it.
Today LittleK and I went to Daisy Girl Scouts. I felt sorry for the leader the last time we talked and I volunteered to be her permanent co-leader. Then I forgot to do all the things I said I'd do, like look into a different meeting place, pick up an activity guide, buy some things for the uniforms, etc. Procrastination, neglect... not exactly stuff I can blame on medication!
Speaking of medication, I'm taking 14 pills a day plus one early on Fridays, plus Advair puffs twice a day (I luuuuuv Advair). I see people once in awhile with portable oxygen tanks and it seems so strange now to think that I was in that boat.

days of family and thanks

I think this is the 14th day since K left. We miss him, especially since we haven't been able to chat online every day, and he hasn't been able to call either.
Thanksgiving was good, my sister made delicious food and there was just low-level kid chaos. R had a screaming tantrum right after we all finished our "I'm thankful for.." statements. He also had a major stink-bomb. I think he's a shock to other peoples' systems but I'm so used to his ear-splitting shrieks and rotten smells that he still seems like a sweet, dimple-faced cuddlebug to me, 80 percent of the time. 90.
T is not the best company for her cousins, it turns out. She's so intolerant of the smallest slights or irritations that visits go south in a hurry. She's especially vigilant about people not sharing well or asking permission to use her things... yeah.
Mom & John got to drive through the beautiful sites of Bryce Canyon, Zion National Park, and the Grand Canyon, before spending Thanksgiving in Albuquerque with Aunt Wanda and her family.
On Saturday night, I took the girls to the Nutcracker Ballet in Anchorage. R was a roadie for Gramma & Grampy at their fiddle dance. The ballet was beautiful and funny, so the girls had fun even if they were so hungry or uncomfortable in a fancy dress.
The only health news for me is that my bone-density scan was bad enough to warrant putting me back on Fosamax. I'll get that report today when I go to Anchorage for a meds refill. Brittle little me!

Tuesday

Tuesday, the day I wake up and the race is on.
This morning after getting the girls to the school door, I met with the mom who did bookorders for third grade last year. I am now (three months late) the official Bookorder Mom for 75 third-graders.
I waded through the rest of the day, picked T up from ballet, and bought groceries, noticing R fading fast around 5. He slept just a little before we pulled into the parking spot at the apartment - and then he barfed. I don't mind so much when kids barf on the floor or in the bath or whatever, but carseat barf is right up there with bed barf in grossout factor and cleanup time. Now I have to do the carseat-dismantle thing to scrub all the smelly stuff off, yay.
Needless to say I pushed onward through dinner, homework, and soccer-prep while watching R doze on the couch after his quick bath. I figured he'd be able to just sit on my lap during soccer for the hour we're there and he'd be fine - but he woke up and barfed on the couch. So I told LittleK soccer was off, she hit her stride in a tantrum all about how she'd already told her friends she was going to score goals, etc. I really almost never cave in to tantrums, but tonight, being Tuesday, I did.
We were twenty minutes late, she didn't score any goals, and R only had dry-heaves at half-time. He's back to his normal self, with just a faint smell. Now they're in bed and I'm avoiding the 150 bookorder sheets on the table.
So I have to wonder, since the dog ate poop last Tuesday, R barfed everywhere this Tuesday, what's in store for next week?

A Saturday, with money

Yesterday the Laramie house closed! I hope the new owners can turn it into a nicer place. We'll be using the money to pay off the debt we amassed since leaving Nome - talk about the weight of the world lifting.
R is glaring at me because I didn't offer him a bite of leftovers the right way. First he shrieked, then fake-cried, crumpled to the floor, and turned around for the glare-finale. He actually started the 'terrible twos' about six months ago, and his shriek is the worst part of it all. It's sort of like the sound an attacking Arctic Tern makes. His future may be in professional bird-calling.
LittleK has a Daisy Girl Scout tea party today. Since I don't ever make an effort to find babysitters, I asked my sister to drive the 45 miles out here just for this... The Tea Party Rules state that an adult must stay with the Daisy and please, no siblings. I just need to spiff up this place a little and lock up the dog since one cousin won't go near dogs. I'm afraid that if I bring Chena to the Daisy thing and keep him in the back of the minivan, he'll destroy something, since his MO now is Do All Misbehaving While The Man Is Gone.

appointment day

The doctors are happy. The echo was good, the PFT was stable and the only concern I had was the early bronchiectasis in my right lung, as seen on the CT scan. It explains the trouble coughing up stuff, it happens often after pneumonia, and it's irreversible. So now I have Advair to inhale instead of Albuterol, and a funny thing called an "acapella vibratory PEP therapy system". It looks like a green shampoo bottle. When I breathe into it, it vibrates the air in my lungs to help me hack up those green mucus blobs you see in Mucinex commercials.

Chunky ChocoSnacks

We're on our own for a little while - K's on his first Lynden flights out of the country. I hope he gets to have some fun in between working and sleeping.
So I have the reins again, no more lazy days for this bum. We're off to a busy start, with Tuesdays being ballet-day for T and soccer-night for LittleK. The chauffeur part was okay except for a big snowfall. I threw together a picnic dinner of salad, milk, pasta and chicken chunks (nothing fancy for these picky eaters) in between ballet and soccer. We were heading out the door to get T, picnic bag in tow, soccer gear on, when LittleK asked, "Mama, why are there ripped-up poopy diapers in Chena's kennel??"
Yep. That actually happened today, our dog actually ate that.

So things could only get better after that, and they did. The kids ate chicken chunks at the sports complex without whining, LittleK scored three goals, and bedtime was stress-free.
Tomorrow I'll talk to my doctors, hooray. I'm not expecting much out of the appointment, just 'stay the course' again.
R had his birthday on Monday! He's allergic to eggs so we celebrated by having him blow out candles on top of a birthday-pie. The toy boxes are already overflowing so he only had two gifts to open, but he was happy.
Happy Birthday Dad! Love you lots.

Tomorrow I'm giving the dog some extra food so he doesn't go in search of snacks on his own.

Life is good

It was snowing a little while ago and it was beautiful.
On Wednesday nights I get to leave the house all by myself and drive to the other side of the lake to the local yarn shop. The women there are older, wiser, and funnier than I am, so I get to laugh and learn humility while knitting projects I never finish. When I get home, the kids are fed/showered/sleeping and K gets to leave for hockey.
My husband is great because he does all the hard work, he's an incredible dad, and he doesn't mind my hobbit-feet and man-hands... I only have to put up with some silence and smelly hockey gear.
Actually I started wearing contacts, shaving my legs, and even putting on makeup lately. Maybe the loss of vanity was just a temporary condition.
The lowlifes are gone, that's a happy thing! And only one person gave me dirty looks presumably to make me feel guilty for all the gun-shootin' I didn't do. Nobody's egged the minivan or left nastygrams taped to the door.
We are looking forward with even more excitement now that the closing date for the Laramie house has been set for November 16th! Words can't describe the relief...
I keep meaning to get copies of my CT & echo reports so I can obsess over them. As soon as I get them I'll post some details. My next pulm/rheum appointment is set for the 14th, just after R's 2nd birthday and the same day K leaves for a couple of weeks. I'm predicting the docs will be happy again.

To all the other people I know who are having health issues, I'm thinking about you and knowing you're strong enough to make it through.

So

I turned a year older. Still alive!
Halloween was fun of course. T's Hogwarts student costume was a lot of work but she was happy... LittleK was a beautiful princess and R was cute in his monkey "oot" because the elastic of the hood squished his face and made his cheeks pudgy. We went to a couple of big indoor events and ended the night with some door-to-door trick-or-treating in a nice neighborhood. K was out of commission the entire day because he ate something bad.
At 2am, the action started upstairs with loud thumps, screams and what I first thought was another glass bottle hitting the pavement outside... but it was a gunshot and there were a few more which followed. !!!! So I called 911, K went into lock-down mode, the troopers came, the people were arrested and now they're packing their things because they're being evicted. The shots were fired out the window, by the chick who lives up there, because they were being robbed.
The apartment manager said she'd let us out of our lease and refund our deposit if we want to leave. K didn't offer up his opinion but I said I don't want to look for another place, move all this stuff, and uproot the kids again. I'm also convinced the management will find decent people to move in upstairs, after all of this.
It sort of sounds like we're living in a slum but we're not, really! These buildings are practically new and only one lot away from the girls' school, we're minutes away from shopping, the commute is great from this side of Wasilla, and all the other neighbors are friendly. LittleK and I even said hi to the governor yesterday in the school parking lot - her daughter goes to our school.
Get this though - when I went to pay rent, the apartment manager said that the "rumor" is that I'M the one who freaked out and got out a gun!!!

Flixster - Share Movies

You know you've made an impression when your stranger neighbors tell the landlord you've been shootin' up the place. I go back and forth between cracking up about it and wondering why the hell would anyone pinpoint a mom of three kids for something like this... motherhood is really not that bad! I really didn't glare at anyone in the parking lot and I only yelled at smokers one time.
So,
February is not that far away, we'll get to the serious house-hunting soon.

O Canada

This bit of news is pretty exciting...
I just noticed it's from almost a year ago (!) - I've been avoiding PH research lately, it had to take a back seat to all the big stuff and all the little stuff like blogging, Harry Potter and sudoku. Leg-shaving, hair-doing and contact-wearing all fell by the wayside too, more evidence of how much my husband must really love me!

55

We've got a deal set to sell our house in Laramie... it's under contract!!!! hope hope hope hope
K finished IOE yesterday and had a fun day today, he got to take R to the sports complex for Turf for Tots. LittleK had a blast at kindergarten, watching a movie and having a teddy-bear picnic. T's class was treated to a special pizza lunch because their wind-up turtle won a wind-up turtle race during the school assembly.
School sounds pretty tough these days, No Turtles or Teddy Bears Left Behind.

I had a great day because my echocardiogram this morning showed a huge decrease in my estimated pulmonary artery pressure. In May, it was in the 70's, back in Laramie at its worst it was about 130, and today it measured about 55 mmHg. 55!! Normal is 15 to 30 I think. My pulmonary function tests and six-minute-walk went well too, mostly because the respiratory therapist cracks me up. Next week I go in for some lab tests and a CT of my lungs, we'll see how active the autoimmune stuff is and if there's any recent lung damage. Then I wait two weeks to hear the doctors describe the results, even though I always get a printout of the CT/echo/lab results from medical records and figure it out for myself first.
Time to put this great day to rest and listen to the upstairs party for a while before I get to sleep. Thanks for stopping by to read.
Goodnight!

Look!

Here's Abe's Bemidji Pioneer article:
J.W. Smith sells bracelets to benefit student with leukemia
Michelle Ruckdaschel Bemidji Pioneer
Published Wednesday, October 17, 2007

At the beginning of this year, Abe Fagerstrom, who was diagnosed with leukemia at age 2, completed more than three years of chemotherapy.

But six months later, the first-grader at J.W. Smith Elementary School relapsed and is back in a Twin Cities hospital undergoing treatments.

While Abe is away, J.W. Smith is offering its support by selling blue-and-white bracelets marked with the words “Abe is an All Star!” to benefit the 6-year-old and his family. Blue and white are the school’s colors and J.W. Smith is the “Home of the All-Stars.”

Abe Fagerstrom, 6, of Bemidji, smiles from his hospital bed for a photo taken in August.

“This is just catching like wildfire,” said first-grade teacher Hallie Baldwin, who would be Abe’s teacher this year upon his return to school.

“We ordered 1,000 (bracelets), and we just received our second shipment of 1,000,” said kindergarten teacher Nancy Aitken, who had Abe in her classroom last year.

The bracelets are available for purchase at J.W. Smith and the other schools in the Bemidji School District, as well as at the Early Childhood Family Education office in Bemidji and local businesses. The minimum donation requested for a bracelet is $2.

J.W. Smith began selling the bracelets about a month ago after a daughter of one of its PTO presidents, Annie Laituri, heard from a friend about a bracelet fundraiser for a child who was sick in Minneapolis.

Baldwin said the fundraiser for Abe, which has raised about $1,600 so far, has been a wonderful expression of support for the Fagerstroms.

“It’s a real encouragement for the family and for him,” she said.

Abe’s parents, Al and Kelly Fagerstrom, split their time between their home in Bemidji and Children’s Hospital in Minneapolis, where Abe is undergoing treatments.

“One of us is usually in the Cities with Abe,” Kelly Fagerstrom said. “He does come home for, sometimes, three or four days here or there.”

She said Abe will have about two-and-a-half more years of chemotherapy. She noted that he is starting to feel the effects of the treatments — he gets sick and lacks energy.

“And it’s hard for him not to be in school with all his friends,” Kelly Fagerstrom said.

But, she said, Abe has a positive attitude.

“He’s still a happy little 6-year-old boy,” said Kelly Fagerstrom, adding that the bracelet sales mean a lot to Abe. “He thinks it’s so cool.”

This isn’t the first time J.W. Smith has surrounded the Fagerstroms with support.

When Abe was diagnosed four years ago, the school held a benefit for him and his family. At the time, his brother Isaac was a first-grader at J.W. Smith. Now, Isaac is a fifth-grader and Ben, the youngest brother, is in kindergarten.

“We cannot say enough good things about J.W. Smith,” said Kelly Fagerstrom, adding that the whole community has been very supportive. “That just helps us so much.”

And the support continues.

“In every hallway in the school, there’s a picture of Abe,” Baldwin said.

Also, J.W. Smith staff members and parents are planning a spaghetti dinner benefit for Abe and his family set for 4-7 p.m. Nov. 18 at St. Philip’s Church. A bake sale and raffle will be included.

Meanwhile, Abe’s fellow students are posting messages on his CaringBridge Web site and writing him letters as well as buying bracelets.

“It doesn’t make any difference what we do in the school, the children just want to help,” Baldwin said.

To read a journal about Abe or leave him a note, visit his CaringBridge Web site at caringbridge.org/mn/abe.

We miss you guys. Hopefully for one of the upcoming holidays we can all be together and hear all of Uncle Brian's new (whatever) jokes.

A favorite

Originally uploaded by 5eskimos

Here's a photo we took at the Alaska Railroad depot on their big Family Day this past spring. It's one of K's favorites because misterguy looks alot like K's Grandpa John...

thump, stomp, puff, poo

Despite all the elapsed time and distractions, my brain is slowly recalling what life was like about, uh, ten or twelve or fifteen years ago when I lived in apartments and had a solid class-schedule of my own (not of someone related to me under the age of 9)... It's the upstairs people. For certain there's a guy in his twenties with shaggy hair and zit scars who somehow seems to have a hottie girlfriend with long dark hair and two fiercely yippy dogs. His car is the standard-issue dirty little black sedan with duct tape holding up the front fenders, parked next to my standard-issue no-frills green mamavan. There may have been another roommate in mid-August when we moved here but he loaded his weight-set and backpacks into his big red no-muffler-having truck weeks ago.
I knew what we were in for on the first night, when the kids and I tried getting to sleep despite the steady love-thumping directly above their bedroom. Since then there's been a drunk-vs-drunk knock-down drag-out butt-whoopin', glass bottles dropped three stories to the parking lot, loud music whenever and serious stomp-walking.
So now I'm the bitchy old mom with ugly clothes and no makeup, glaring at people in the parking lot, yelling out the window at the jerks from the next building smoking upwind of my windows. That's me.
Speaking of, after the chain-smoking lady downstairs moved in a couple of weeks ago, Dawn at the rental office slowly and kindly said that yes, smoking is allowed in all apartments (her eyes were saying you moron you live in a cheap [though deceptively respectable in appearance] apartment in Wasilla where everyone smokes and parties and has yippy dogs they drive around in monster trucks).
The real winner though in all this World of Apartment Wonders - something that I didn't see all those ten, twelve, whatever years ago- was the chunk of pet doo-doo I found in one of the coin-op washing machines tonight, obviously separated from its two partners on the floor of the laundry room. Wonders never cease.

photos, finally

So here are all the photos I've had tucked away in the camera. Not all, but enough to show what we've been up to... I couldn't get the caption thing figured out so here's the run-down:
We soaked in the hot tub and had a great picnic at Gramma & Grampy's Tolsona cabin,
watched some Wasilla High School football,
ate some pudding at nap time,
floated Wasilla Lake in the kayaks,
rode ponies at the Alaska State Fair,
had a great first day of school,
enjoyed the big family barbecue with aunties, uncles and cousins,
whooped it up at one of G/G's fiddle dances,
sculpted mud at Point Woronzof,
and had a blast at the Bear Paw Festival.
The four smiling women are (back L-R) Aunt Wanda and Auntie Roseanne, and (front L-R) Auntie Sharon and my Mom!


On the left, I was suckin' up the O2 in Laramie in December 2006...
On the right, I was feeling the effects of all the changes we'd made by July 2007!

Packrats Anonymous

So I was sitting here doing sudoku yesterday morning, silently dreading the arrival of the movers, when I heard the deep rumble of a semi truck slowly getting closer. I looked out the window and realized that the movers were here, half an hour early, with a SEMI.
It was only half-full (which is still just ridiculous) but I was shocked, having expected a mere moving van. We opted out of the 2-stop delivery (here, then storage), so the kids and I are living in the shadows of our great piles of useless junk. They're having a great time finding hiding spots and forts which they instantly fight over. Everyone's thrilled to have the beds, TV, DVD player, computer, and familiar old toys back. Especially the TV. R says "eee-beee" as he stands about 2 inches from the screen. LittleK is over there staring at it with her mouth open...
I'll be taking boxes to storage tomorrow, once we get back from an overnight at G/G's in Anchorage. I already brought the Massive Elk Head to the storage unit, it was hilarious because that thing is bigger than I am. There are only two negatives in this situation - K's gone for training until the end of the month, and it smells like musty basement with a hint of gasoline thanks to the (drained) generator that's boxed up in the bedroom. At least it overpowers the doggysmell.
I love Chena but I'm not a very good dog-owner-parent-whatever. I felt guilty about that a couple of days ago and bought him some new chewy stuff and a nice collar. I can't seem to work out the timing of his poop-schedule though, and he's not supposed to be off-leash outside - but he won't poop if I have the leash on him, so he found the living room floor and the girls' bedroom to be convenient crapping spots a few times. yech.
Healthwise, my doctors are really happy with my status right now. I'll have more appointments in three months. Our nephew Abe is sick again and is toughing out more horrible treatments in Minneapolis, so my problems are nothing really. We love you Abe!!!
We're about to escape our cramped quarters and head to Anchorage to do a (very late) family birthday thing for the girls. Pictures on the way soon...

news

Wow things have changed!
K got the Lynden job, packed all of our belongings and drove up from Laramie last weekend. The kids and I had already moved into a tiny apartment here in Wasilla on the 15th with help from our eight-month hosts-turned-movers, Gramma and Grampy. We are forever in their debt. Hey we're forever in debt anyway.
The Laramie house is on the market and we've had some offers. A couple of offers were close to working out but didn't. So... selling a house is a bit stressful.
School started! Kindergarten doesn't start until next week, but they had some testing on Monday of this week. T is adjusting to all the new things - new home, neighborhood, school, teacher, potential friends, etc. She's sort of bummed out that 'nobody wants to play' with her at recess, but that will hopefully change soon. She calls her best friend in Laramie about once a week. She reads book after book. The other options are playing with her brother and sister or going outside with the dog for a while. LittleK is super excited for school and is happy to have her dog back.
We're roughing it without couches, a table or a TV until the moving van gets here about September 4th. Our little car-DVD player stopped working a long time ago, and we just got phone and internet service yesterday I think.
We're all getting used to rules like being quiet (!), no bikes or toys outside and no storage room inside for them, park your car this certain way, don't use the dishwasher at this time of day, don't let your kids play outside (!), etc. The apartment grounds are half-paved lots and half-gravel for dogs to poop on, no playground in sight. Hopefully six months will pass quickly. Other than those minor annoyances we all like Wasilla so far.
R is vertically-inclined. Of course that means he falls down from the heights he reaches so there's always some bump or thump happening. He has no fear on ladders or stairs at the playground and since he started running, he's hard to catch. His speech still isn't very clear but he tries new words all the time. We like to try to get him to say 'sudoku' (dukka-doo) and we're still trying for 'please' (eee).
LittleK is boorrrrrrrrrrred and Misterguy pooped so I'll have to leave it at that.

relatives, interview, moooooose

T & K cruised on up the AlCan in four days. They showed up at about 6pm on July 3rd. The sisters were such polite little best friends to each other for two whole days! It was hard for me to really enjoy that peace because I knew what was just around the corner, glaring, tattling, scratching, hissing and yes, biting. And wart-threats. K had to go back to Laramie on the 9th.
We've all been adjusting pretty well to this weird refugee stage of our lives. The day camps are a nice distraction and having the messy, smelly old minivan back is really comforting. I was doing a sort of inner-William Wallace thing when I drove it again for the first time... FREEDOMMMMMM! The kids and I call it the Moose Car because of the noise the power steering makes when we turn. The girls want to put some fake antlers on the roof to see if the real moose along the side of the road will notice.
LittleK would have been signed up for Kindergarten if we were still in Laramie, as their school district allows four-year-olds who will turn five by September 15th. Here in Anchorage and Wasilla, the birthdate deadline is September 1st. So we're jumping through the hoops of 'Early-Entry' stuff: a psychologist's evaluation of her IQ and visual & motor skills, and some other paperwork. We could have gone through the expense (and boredom) of another year of preschool for her but we decided she'll be much better off in Kindergarten. The psychologist said she's ready - we'll know more when his written report comes in the mail. Now all we need is to know which city we'll live in and which school these kids will attend!
K came back up this weekend for a job interview on Friday. He said it went well and the company will call him back this coming Friday... !!!!! He was able to be here for our big family potluck but had to get on the jet to Denver at midnight last night.
All the people who were here last night included: our Chidester relatives Wanda and her daughter Heidi, Auntie Sharon, Uncle Paul, Auntie Roseanne, Rick, Peggy & Pat and kids, K & me & kids, and Gramma & Grampy. There was an abundance of delicious food and non-stop kid noise. Heidi & Wanda are visiting this week from Albuquerque and it's so interesting to hear everyone's stories about those old Montana Chidesters. Genealogy research can create priceless connections and memories...
As for me, I'm in the waiting stage between 3-month doctor appointments. I had some blood drawn last week and still have frequent coumadin-monitoring done. I feel fine except for some chest congestion, an easy price to pay for kissing germy kids.
I''ve been feeling like Mama the Conqueror! I defeated three nasty plantar warts which had their hold on T's feet for a few months. Two words: duct tape. They most likely won't come back but since the ick factor is pretty high I'll be checking our family feet for a long time.

... more cat-fighting to stop. And now they woke up their brother.

quick hi

Happy Birthday Grandma R! Happy Birthday to BigB in Bemidji!
I have to leave now and referee some disputes.
Favorite quote of the week: "I will touch you with my warty foot if you don't stop bugging me!!" (big sister to little sister) ... ew, warts!

birthdays, travels...

Happy Birthday to my sisters! P yesterday, J tomorrow. My youngest brother had a birthday last week, one of my nieces turns 3 on the 4th, and one of my nephews will be 10 on the 7th! Our Minnesota relatives have some special days coming up this month too...
Today is the 13th anniversary of the day K and I were married. Right now he and T are driving between Dawson Creek, BC, and Whitehorse, YT. They started their long drive up early Saturday morning and made it nearly 800 miles that first day. Sunday, they drove from Lethbridge, AB to Dawson Creek. Hopefully they'll get as far as Whitehorse tonight, then finish the drive tomorrow night.
R is screaming at me, he wants me to fix a hopelessly broken toy and now he's screaming harder because he just hit his face with it. I think it's nap time.

AlCan Minivan

Happy Belated Dad's Day!!
INR is a powerful little thing, a tiny little bullseye of a test result you must target when you're taking Coumadin. When mine is tested the pharmacist rattles off the mandatory questions about bleeding, falling, bruising, changes in diet, and missed doses, while the kids climb the walls in the tiny little 'coumadin clinic' room. LittleK chooses which finger of mine gets jabbed and then we wait while the machine calculates my INR, magically pulling the tiny drop of blood into a three-pronged red line leading somewhere inside the plastic box. I have to repeat this test every week if it's below 2.0 or above 3.0. Today I hit the bullseye so I won't have to drag the kids to the coumadin clinic for another three weeks!
Coumadin changes you. You say goodbye to your normal amounts of olive oil, broccoli, salad, parsley, asparagus, green tea, anything soy-based, and lots of other things which contain vitamin K. Can't have alcohol either. The whole point of taking Coumadin is making blood 'thinner', so there's less of a chance of developing deadly blood clots. Dr. Voelkel in Denver put me on this stuff since PH makes a person's blood vessels in the lungs constricted. I really hate it but I understand it and accept it.
I actually did try the whole bus ride-across-town-with-the-kids thing. It was a very sunny, very windy day a few weeks ago. LittleK could hardly contain her excitement when she saw the bus coming towards our stop by the library. We spent some time at the mall and headed home on another bus with a short side-trip to the grocery store... by the time we were on that second bus she was singin' another tune, "We SHOULD've just taken the CAR!" We ended up being picked up by Gramma after missing our last connection by a minute or two. Crazy.
We're into the second week of Preschool Summer Camp. This was the best idea I've had in a loooong time. It's only two hours a day, four days a week, but it's nice for all of us, especially LittleK. Today they went swimming. Last week they had field trips to the fire station and to a park for a picnic. Last week's obstacle course was a blast I guess, my kid "beat all the boys!!"
Grampy's busy with his garden and flying and fishing, Gramma is in Hawaii this week having returned from Nome and Golovin last week. The big family reunion in Golovin is in two weeks, but I can't go. We're not exactly rolling in piles of cash, and K & T should be just pulling into the driveway after setting the record for Fastest Time Up the AlCan in a Minivan.
I focused some of my obsessiveness on doing some Wasilla house-hunting lately. We can probably get about 1100 square feet of a house, on about an acre. It's beautiful out there but rough around the edges. Just the way we like it.
I could go into some boring self-analysis but it's better just to keep that in my head, and go to bed.

cannula schmannula

Hey, we're pretty thrilled around here - I'm well enough to be off of the oxygen. I can just be normal old me again!
The tests I went through showed my lung disease is stable. There wasn't any decrease in inflammation on the CT scan, but there wasn't any increase either. The significant test, the echocardiogram, showed a drop in my pulmonary arterial pressure from 80 three months ago to between 70 & 75 now. That's still about double a normal PAP but it's great that it's decreasing. SO, the doctors are not referring me to the specialist in Seattle, and my meds will all stay as they are for another three months, then we'll repeat this whole process. A week after I saw the doctors I had a six-minute walk test (without oxygen) and an ABG... I walked farther than I did a week earlier, and had o2 sats no lower than 95, which proved that I really don't need supplemental oxygen. Sea level is the place to be.

Thank you to GrandmaR for the care and help in Laramie recently. And of course to everyone who helps us, wow, we need it and appreciate it.
Other stuff-

• my 2007 veggie seedlings are yet more proof that I should stay away from plants
• T's last day of school is tomorrow! Goodbye second grade!
• I signed the girls up for summer day camps, K in June, T in July
• R's way better at telling us what he needs except for his word "ssss" which has about 10 possible meanings. juice? cheese? please? brush?
• "beepy"=Grampy, "mom"=Gramma, "mama"=mama, "whatwhat"=LittleK
• K is packing and cleaning the Laramie house... poor guy
• my dad visited over the weekend and we saw Nanny at her place
• Gramma & Grampy are power landscapers

I've come to realize lately that some of the things I've grown to value in life are meaningless. I finally understand that I can't hope to influence anyone about anything, except for my kids. I especially hope they understand what their choices are, how important it is to think for themselves, to be loving, and to never stop learning.

They may even learn how to grow vegetables.

splish splash

Hope your Mothers' Day was happy. My family gave me special things like flowers, candles and chocolate.
I can't think right now because the kids are screaming at each other and R is trying to eat plants.

We've finally had some great weather for playing in the backyard (R eats sand, LittleK drives the skidsteer with Grampy) and bike rides. I may even get brave enough to ride with the kids to the bus stop and try the bike/bus mode of transportation.
LittleK stopped liking storytime at the library so our Friday mornings have changed a little. I took her to a lunchtime kids' group at the Dimond Center today, she likes it so far.
We got to visit with the newest baby in the family, Orson, his mama B, and his other grandma C. He is sooo precious with his light red hair and his I'm Serious Eyebrows. B played the guitar and sang some beautiful songs. When she sings I understand that for the rest of us who can carry a tune, we probably don't sound at all as good as we think we do and we don't even come close to having talent like hers. Lucky Orson and his dad!
I lined up my appointments for next week: PFT, 6-minute walk, chest CT and echocardiogram, pulmonologist & rheumatologist. The results determine whether or not I get a referral to the PH doctor in Seattle.
So since I just caught R splashing in the toilet water I'm moving on... goodnight!

at least it smells good

I'm into baking bricks now. At least that's what they end up being despite their hopeful beginnings in the breadmaker. We still eat them, even though they're brick-ish and salt-free. The book I bought about low-sodium cooking fills me with guilt and hope at the same time. Bread without salt will take a lot of getting used to.
What else... I've started some seeds, tried making an eskimo drum for R, bought a bicycle and an infant bike seat, and checked out Eagle River properties. Who knows where we'll end up living - this housing market is crazy!
The bicycle is for getting out of the house, which the counselor suggested last Friday. R did okay with the short bike rides we've taken, but he hated the helmet. I don't really get winded riding the bike, surprisingly, but we haven't gone up any hills or anywhere past one block.
The counselor also suggested putting LittleK into a preschool again, and to try meditation exercises, visualization techniques and more yoga. We'll see. I know for sure I need to get her help on how I can stop alienating people. Maybe she has a good bread recipe too.

oops!!

Not much of a blog lately. That can mean I'm too busy to write, or my life is too excruciatingly dull to write about, or what I've been thinking about writing is just inappropriate... Actually all three reasons apply this time.
Since the end of March: K turned 40-something, Gramma & Grampy took me and the kids to their cabin near Glenallen, Anchorage's snow melted, and a bunch of other stuff happened that I've forgotten about. Grampy left this week for Hawaii. Gramma's been sidelined by a big muscle spasm in her back but she's recovering. T started soccer finally in an age-appropriate league, we're all excited about that - she's got some soccer potential. LittleK's happy for spring weather but refuses to play outside alone. R's new words include "book", "DON'T", "duck", and "hot". He is suddenly terrified of taking baths!
I'm trying to understand why it seems so important to me to speak and write well. It should be more important to hear and understand what someone is trying to get across, than it is to constantly edit what they're saying. The only reason I can find for this particular obsession of mine is that I want my kids to be well-educated, and for all their words and actions to reflect that. I get a little carried away sometimes...
The counselor I was supposed to see a few weeks ago called in sick and then went on vacation. So I haven't seen her, but I've found ways to not see this present life as such a challenge. There are people with problems far worse than mine.
It's time for my daughter and me to make some banana bread and homemade salsa. I just have to convince her to turn off the TV.

sunnier days

Days are longer now - the sun is still up at 8pm!
So many friends have reached out in the past year! I appreciate every word of every email and card. I confess I'm not much of a friend when it comes to responding. I'm really quite horrible at that as many people already know. It's right up there in My Top Ten Character Flaws. If I sat here long enough we could rank the Top Seven Hundred but who has the time?
My LittleK and I seem to be getting along better, at least for the past few days. We do really well when I remember to carry out promises I've made. I finished sewing her kuspuk - she loved it so much she wore it all afternoon and evening, then slept in it. I've got fabric to make two more and hope to finish them quickly now that I remember how.
I've taken up a couple of challenges lately: cutting way back on sodium, and giving R a haircut. They're equally impossible tasks but I've finally been using the part of my brain which handles creative thinking.
Gramma has been taking LittleK outside almost every day, to play in the snowy front & back yards and to try the scooters out on the driveway. Sometimes R goes too, once in awhile Grampy goes, and sometimes the outings are longer walks through the neighborhood or even on the trails in Kincaid Park. When it warms up I'll be spending time outside too.
R is adding to his vocabulary. "Sh" means 'fish', "Bubba" means 'bubbles', he has some variations on 'dog' and he also calls out "Mamaaaa" once in a while. He can point out where to find toe jam, where the bananas are kept, where the potty is, and what direction to go to find the garage. He has learned that it's funny to pass gas. I did not teach him that and no one has confessed to it... but Gramma is not above showing the kids how to burp vowels, so... K will surely cover that entire range of behaviors so it doesn't matter that R has had some early lessons.
I had another PFT yesterday and a 6-minute walk test. The PFT measurements show no change in my lung function except for an obstructive breathing problem which responds to inhalers. I was able to walk 200 feet farther than I did in the 6MWT a few months ago. The pulmonologist made clear the treatment plan of continuing Cellcept through June, and if we don't see improvement, she'll refer me to Dr. Ralph, the PH specialist at the University of Washington. I feel better in general, but my hands have been swelling for the first time since last March so I'm a little nervous about that.
I asked for a referral to ANMC's counseling services, to help me deal with the more emotional side of having a "life-shortening disease". It's impossible to describe the range of thoughts and emotions going through my head when I think about dying, about leaving behind my kids and husband and everything, all that feels like an unfinished life. I don't have one foot in the grave and don't plan to have that outlook, but the thoughts surface every now and then. I spend just about as much time thinking about new treatments for PH and the eventual lung transplant, how my kids will have to put up with me when they're teenagers and someday when I get to hold grandkids!

caw caw

R's big accomplishments lately are saying "JET!" (actually he says DET) and making a raven noise on cue. When the winds are out of the north, giant cargo jets fly over the neighborhood about every two minutes and stop everyone in their tracks. So jet is the big word. His first word was 'uh-oh', but he got bored with that I guess. At 15 months, T was working her way up to saying 'Afghanistan'. More proof that girls use big words and boys make animal sounds.
I intend to get some pictures stuck in here somewhere, but I've been too lazy to figure out how to transfer photos from the camera without the cable that came with it. I know Grampy can help me so I'll burden him with that tomorrow. I mostly want to update that profile photo and maybe immortalize this post-prednisone hairdo which my own sweet old grandma felt compelled to tease me about. I will soon have it chopped off in hopes of evening out the new growth spikes with the five hundred or so strands which refused to give up. I will of course post pictures of the kids & grandparents.
Healthwise... we've all had yucky colds which haven't completely gone away yet. I saw my doctors last week and we planned to start another doubling of my Cellcept dose - but my white blood cell count was so low, we had to put it off a bit. The rheumatologist is puzzled with my symptoms (lupus) not matching my lab results (scleroderma). The pulmonologist is puzzled that my lungs sound so clear yet look so horrible on CT. The new echo results came back with a pressure higher than I'd expected, but I've lost a bit of confidence in the accuracy of echocardiograms when it comes to pulmonary arterial pressure. I'm sticking with the result of the heart cath from January, 62 I think. I need to try harder to exercise and eat less sodium. And stop my oxygen-cheating.
The other half back in Laramie has been busy. Among their recent activities: hockey in Rock Springs, overnighting in North Platte, downhill skiing at school, the school musical, Girl Scout World Thinking Day, Girl Scout cookie sales, adjusting schedules for Spring Break, growing out bangs, etc.
Ugh. LittleK whines even in her sleep!

Research Night

I've just spent a few hours looking up STUFF. I should have been sleeping but now I know more about anticentromere antibodies, ground-glass opacifications, right ventricular functional status and PH prognosis. I also finally registered with Medscape.
R had an appointment today, to find out if he's allergic to eggs. We waited in our kiddy-decorated linoleum holding cell for probably an hour before they actually did the skin-scratch test. After waiting another twenty minutes we found out the result was positive. So now my family is officially an Annoying Allergy Family. I honestly have felt close to zero compassion for those families whose kids go to school with my kids, who have to pressure the entire school district to actually make a "Peanut Policy" and a "Tree Nut Policy" and a "Birthday Snack Policy" and on and on. Serves me right I suppose.
LittleK's presence is usually a guaranteed stressor... for me, at least. The chatter, demands, refusals, picky-eater habits and whining just add up. So I tried to not bring her along to the allergist... but she was dressed, ready, and insisting on sticking with me. She also PROMISED (her idea) she would NOT whine, yell or get bored!!! As soon as we were out of the driveway she whined that she was bored - so I said I'd just turn around and bring her home. Her response (in her sassiest DUH, MOM voice) was that she'd promised not to whine at the hospital, not in the car.
I had no comeback for that but I now know I should probably get her promises down in writing.

Backtracking...

Okay, let's see... W & B had a baby boy on Valentine's Day!!! He's beautiful, growing, so lucky to have such patient, mellow parents. B was amazing during the labor & birth. The baby has very light brown hair, a surprise since his mom and dad both have (well, W had) dark hair. He does not have a name yet. No big hurry. Congratulations!!!!
I will not be taking the chemo drug Cytoxan, at least anytime in the near future. When I saw my doctor team on the 16th, they decided another immunosuppressant, Cellcept, would be best. I think the idea is to wipe out any & all autoimmune inflammation in my body, then see if that brings down the pulmonary hypertension.
For a while I've suspected that Lupus might not be quite the correct diagnosis for me. It is almost the only explanation for my pericardial effusions and a few other things, but with certain ANA (antibody) tests, my results show patterns most common in scleroderma patients. Add to that my autoimmune dry-eye thing, most often seen in Sjogren's syndrome... The rheumatologist thinks I have 'autoimmune overlap'. It doesn't change my treatment, it just makes it harder for me to explain all this crap to other people! I'm still just going to call it lupus.
The worst part of it is that PH associated with scleroderma has the worst prognosis of any PH. This hill is just getting steeper.
After W went back to Nome we had a pretty boring week. We did go to the Bering Straits Native Corporation reception for shareholders. Dad was back in town for that since he's a board member, and his wife is a vice president so she was at the meeting too. I tried saying hi and bringing the kids to talk with her but as usual that didn't work out. She's pretty good at ignoring people. Whatever. The rest of the meeting was great, seeing so many people from home, watching the King Island Dancers, and hearing about the BSNC financial operations. R did a little eskimo dancing too during the invitational dance. On Friday, the kids and I had lunch with my two sisters and my dad. Good to see AuntieJ!
Last week, a high school classmate of mine died. He was only 36. He had always been a heavy drinker and his liver was in pretty bad shape but the last I'd heard of him, he was doing better. Peace to you always Truman.
LittleK got to accompany Gramma & Grampy to a fiddle dance last night. She of course insisted upon dressing in her own unique way (purple T-shirt, red velvet jumper dress, white tights, black ankle boots...) which we tried to modify and failed miserably. What a scowl she has. Somehow she ended up going dressed as she pleased, with a HappyMeal promise fulfilled (it was supposed to be a ChangeYourClothes bribe), a new friend and ten seconds of fame singing 'You Are My Sunshine' on stage. So when she makes her first million as a ballbreaking lawyer I expect a little credit.

Happy Birthday W

No baby yet...
My nephew had his eighth birthday on Friday and we celebrated Saturday, at Anchorage's big indoor waterpark. It was huge, fun, expensive, LOUD and unbelievably hot there. The whole thing made me wish I was five years old again - crowds, chlorine, slides, a wave-maker, a pirate ship, pizza, Pepsi... The kids loved it!
Dad visited, nice to finally see him again. R cuddled with him right away. LittleK mostly ignored him. Having three sets of grandparents can be confusing. We didn't manage to get my other sister and my other brother to join us, but we can try again the next time Dad's here.
Here's some information I found on cytoxan treatments for Lupus.
I've been cheating with my oxygen. I do keep it on at night and during most of the day, but there are times when I feel like leaving it off for a few hours. I really hate it. Imagine getting a 40-foot leash, strapping it onto your head or face or neck, anchoring it to a noisy whooshing box and attempting to go about your day like that. Yeah. It does provide some laughs once in awhile, like the time T was so angry at me she screamed, "I'M GONNA STEP ON YOUR OXYGEN TUBE MAMA!!!!!!!"

treatments make you

BETTER
Treatments make you better, treatments make you better...
K and I have been researching Cytoxan. I had to cry the other day, thinking that now my family has to put up with me getting chemo, after we've finally recovered from my psychoticmonstermama days of predisone treatment. There's another tunnel ahead.
I decided it'll be best to stop babysitting my niece. I think at this point zero responsibility sounds appropriate. Zero stress would be nice... but I am after all in my thirties and living with my parents, a tv-addicted overly willful four-year-old and a toddler who doesn't yet realize that stairs are a major hazard.

Oh, and I don't have my car.

TV comes in handy for escapism I guess. There are two shows I hate to miss, Lost and Grey's Anatomy. I have that sort of militant SHUTUP IT'S ON attitude which maybe makes people uncomfortable. Heh heh. I like to think it comes from a real appreciation of storytelling... can't miss a thing. Anyway, the kids' bedtimes are all messed up because of it. LittleK will soon be doing her best to convince me that it's not bedtime if the sun is still up, so I don't see much hope for any solid schedule until September.
Dad's returning from a business trip to Puerto Rico and will be spending the next couple of days here in town before heading back to Nome. My two brothers and two sisters are here, so we'll probably get together for lunch and a photo op. Dad hasn't met R yet! This weekend we'll also be celebrating my nephew's birthday, and hopefully also the birth of my brother's newest child.
Time to go and enjoy Elvis on the ol mp3 thing.

Just hoping

So.... my life is so busy I can't even sit down and write about it.
I started babysitting my sister's youngest daughter. She is a sweet baby and she's very easy to take care of. She has fat little legs and pretty eyes. I love how she falls asleep in my arms! R doesn't do that since he figured out that there's a whole world of things to dig in and look at and/or taste. He and LittleK come along to my sister's house, weekdays from 8am until1pm.
My brother and his girlfriend are waiting for their baby to be born! Its due date is February 10th. They're also staying here at Mom's house, and his sons come to stay every weekend, from Wasilla.
I think the mood around here could be described as quiet anticipation, except for when the pack of cousins is running around screaming.
I need to fill in the details of my trip to Denver & Laramie. I left here Sunday, January 21st. It was strange but also comfortable to be back there. I left LittleK & R here with my parents. Monday morning after dropping T off at school, K & I drove to Denver and I had tests done, including: a V-Q scan, chest xray, pulmonary function tests, and an echocardiogram. I haven't seen the results for any of those except the PFTs. We spent the night at Angus & Olive's B&B... Tuesday morning I had a right heart catheterization. It's basically a long skinny tube inserted into my jugular vein and pushed along to my heart where specific pressures are measured. I don't have the official results yet, but I think it did show a decrease since my last echo in September. We talked to the PH specialist, Dr. Voelkel, who told us it makes sense for me to transfer my care to the specialist in Seattle. He also recommended a couple of medication dose changes and suggested Remodulin or Rituxan as possible new therapies. I spent the rest of the week in Laramie (hey ladies!!) relaxing, visiting, and making Girl Scout swaps with T.
Since coming back to Anchorage, I've seen an ophthalmologist, optometrist, pulmonologist, and I met ANMC's new rheumatologist. I finally met Susan, the case manager in Internal Med whom I've been harrassing over the phone since November. The opthalmologist put a new punctal plug in my funky right eye. The pulmonologist is planning to put me back on an immunosuppressant, specifically Cytoxan. She said it's been shown to completely eliminate PH in some patients with Lupus & PH. She also explained that what I have is not yet massive scarring but (possibly reversible) inflammation of my lung tissue. I haven't felt this hopeful in a long time.
K and T have been busy in Laramie. Today he was putting up moulding - I wish I could've seen that. T's new project is dog-training. She ordered a whole kit for it through the school book order. It's probably working out great, since it's been so freezing in Laramie that the dog actually gets to be inside. Our girls have always been into Super Bowl parties: making menus, preparing the food, making decorations for the house, etc. So that's next on everyone's list.
Well, if you just can't get enough of my jaw-dropping eye-popping life story, come back next week. I may even get to show pictures of the new niece or nephew... if not you'll just have to settle for some shots of my new post-prednisone hairdo.

he's walking!!

R is a little walking man now. Yesterday he made the switch from furniture-cruising to walking at every opportunity. Christmas Eve he took nine steps by himself, and today he was up to thirty-four! He'll even stop, bend down, pick something up and start walking again without falling over. His personality has also taken a dramatic turn. He used to be mellow, 100% sweetness... Now he screams and fake-cries when he doesn't get his way. Sounds like LittleK.
Today we lined up to see which one of us R wanted to be with... he crawled (it's faster than walking) right over to Grampy. So he's figured out that guys need to stick together when they're outnumbered by women.

uh oh

K gave me an mp3 player for Christmas. I didn't use it at all until a few days ago... when Grampy showed me how to find music online. So this is my new thing. Now my poor family has to put up with me walking around badly humming music from the good old days. I told LittleK she has to start poking me in the shoulder if she wants to talk to me.
Actually, the only time I get through an entire song from start to finish is around midnight, when I'm the only one awake in the house.
It's hard to tell which obsessions of mine will stick. Knitting seems to be making it through the years even though I rarely actually finish what I start. I obsessed over scrapbooking, quilting, making kayaks, genealogy, sewing baby clothes and kuspuks, and stained glass, to mention a few. I think this is normal human behavior but sometimes I worry...

mechanical salmon

What has been going on.....? The New Year arrived, big snowstorms hit Denver and Anchorage, Saddam was hanged, Democrats took over Congress, etc. Auntie Agnes and Auntie Alice passed away - we love you, rest in peace.
This full house mostly emptied out when Auntie D went home, K & T left, and my brother and his boys went back to their homes. The holiday spirit disappears so quickly. I miss everyone.
On New Year's Eve, we took the seven kids downtown to watch the fireworks show. It was SO FREEZING COLD but that didn't take away from the fun and excitement. We watched guys juggling fire sticks, people trying to stay on the mechanical salmon, crowds of people ice skating, 'shadow-dancers' and stilt-walkers in costumes. I know everybody had a great time until we ended up sitting in the suburban on the top floor of the Penney's parking garage for almost an hour and a half, waiting for who knows how many cars to inch down the ramp. With a car full of kids who hadn't eaten dinner yet.
I've mostly been a lazy bum, really. I help a little but it's sometimes hard to keep up with Mom. She has enough energy to constantly clean, cook, do laundry, and mother us all, especially R. The house isn't exactly toddler-proof so we're always on What Did He Put In His Mouth? alert. LittleK is steadfastly following in my footsteps, becoming a TV junkie. I mean, she already was a TV junkie, she's just better at it now.
Today we went to the library and stocked up on good kid books. LittleK also had a chance to figure out what games are available on the computers in the Children's Library - she cried over that yesterday when I deprived her of computer time during our first visit. So I quietly told her, "They don't like crying in the library." Imagine the looks I got when she started howling "MAMA YOU CAN'T SPANK ME IN THE LIBRARY!!!!"
Today I exchanged my Wyoming driver's license for an Alaska license. I tried to do it yesterday but I failed the written exam. Yeah, yuk it up. I didn't really expect to pass it since I haven't thought about that stuff for almost 20 years... The questions I missed were mostly like "what is the minimum time a license is revoked for a DUI conviction? 60 days, 90 days" etc. I also did not know that it takes just one hour to cancel the effects of having a 12 oz beer, and that you have to dim your high-beams at least 500 feet away from an oncoming vehicle. Anyway, I did much better this morning and now I'm a card-carrying Alaskan driver again.
While K & T were still here, we spent an evening with my best friend and her family, in their gorgeous new house. It's a friendship that continues, ever, just in new settings every few years. I am very thankful we're family.
What do I think about while I'm being a world-class lazy bum? I've started thinking lately that life is mostly about comfort zones. Creating them, refining them, maintaining them. Trying to keep yours from clashing with someone else's, or finding a way to blend them together. Life is also so very much about the little things, about deciding which ones really truly matter. Life should not be about accumulation... but it so easily turns out that way.
As for my health, I feel normal. I think back to summer when I was crunchy-boned, monster-faced and wigged out on prednisone, too weak to pick up the baby... so now I'm experiencing the light at the end of that tunnel. The coumadin-clinic guy checks my INR each week and is frustrated I'm not stable yet, so my dose keeps going up as I try to figure out the whole vitamin K issue. Blah blah blah. I have appointments in Denver with the specialist on January 22nd and 23rd. I'll be having a right heart catheterization, pulmonary function tests and a VQ scan. It should be interesting! There are alot of other details to be worked out so those dates may change.
It's way past my bedtime and this is quite long and boring - so, sayonara for now.

quick update

Christmas was perfect, we had a full house, it was fun and loud and there was so much delicious food! Thanks to everyone who was a part of the big day, especially Mom and John.
R has a fever right now so I was online searching for pediatric Tylenol dosage information. The hospital doesn't allow people to talk to ER nurses so I guess we have to find our own way...
Last Friday Mom & I had appointments which all worked out great. I am now back into their system as an Alaskan resident and therefore eligible for healthcare at ANMC. I think I may have overwhelmed the doctor I saw in Family Medicine, since I have so much going on. We covered everything and he's referring me to Pulmonology, Opthalmology and the 'Coumadin Clinic'. It feels good to be making progress.
There are so many friends and relatives I've been able to see for the first time in ages. I forget that they haven't seen me with the nasal cannula so their concerned looks sort of make me want to giggle (no disrespect, I can't explain it). Everyone's so nervous about stepping on the crazy long oxygen tube. There's some prank potential there...
So K & T joined us on Saturday and our little family is temporarily back together, tripping over our bags of clothes and junk in Mom's guest room. I love being together in a different setting, it brings us closer together.
Sunday we got to watch my sister's daughters be baptized. They all did so well and looked beautiful. It was the second time already that we joined them at church - we watched the girls perform in the Christmas program last week.
Anyway, I've got other stuff to do like finish some laundry and check on the baby before I regain my status as Laziest Person in the House.
Happy Holidays everyone!

Change in latitude, change in attitude

Here we are as in olden days...
LittleK, R and I arrived in Anchorage last Saturday with Mom. Many many thanks to UncleB and AuntieM for graciously allowing us to invade the house, eat all the food, and hog the TV. We love you guys!!
While in Denver, K and I went to the University hospital and talked with Dr. Voelkel about me and my diseases. He believes my pulmonary hypertension is most influenced by my autoimmune problems. He felt the need to stress how serious this all is... maybe I smiled too much, I don't know. He also thinks that I could qualify for some clinical drug trials. I will need to return to Denver to have some tests done, including a right heart catheterization... those tests will likely be scheduled for mid-January. Meanwhile, I'll be seeing a doctor here in Anchorage at ANMC, to be established in their system and to give them an opportunity to realize what a train wreck they have on their hands.
"Moving" was a bit stressful, because I'm such a procrastinator. Nothing really went like I'd imagined it as far as preparing, packing, sifting through the mountains of paperwork and clutter I've accumulated over the past four years. I managed to create one clump of stuff to be given to the Salvation Army thrift store, and I emotionally separated myself from one giant garbage bag of stuff which qualified as GARBAGE. I will definitely have to go back to Laramie to continue the process...
I think the most stressful part of coming up here was convincing healthcare providers at ANMC that I really do need oxygen. That was harder than working with the airline in setting up oxygen for flights. ANMC's rules are that you have to be Alaskan Native and also physically a resident of Alaska to receive their benefits. So I just ran into so many annoying technicalities - I've seriously amped up my dependence on Pepsi for providing physical and emotional relief. I luuuuuuuuv Pepsi.
Anyway, the kids are loving it here, we're excited for K and T to join us this weekend until January 1st, and I feel great. We'll surely be having a white Christmas.

here's a hug

It's funny how each day is the same 24 hours, but now that we're getting closer to leaving, the days seem so short.
I'm writing today mostly because it's one way to avoid housework (!)... but also because I need to acknowledge the friends and family who actually take time to read this. Just to know that you care really means alot to me, because this is pretty serious stuff my little family and I are facing. Quyanna from the bottom of my heart!

art museum day

This morning after K left (why do university people have to fly on weekends?) - the two younger kids and I went to pick up T from her best friend's house. They had a sleepover for the friend's birthday and had a blast, giggling, eating, talking, playing and not sleeping much.
We went to a community Christmas celebration at the fine arts museum. The kids were only slightly bored doing holiday crafts and listening to pianists, guitarists, choirs and school orchestras. I got tired of it all pretty quickly because I didn't bring the stroller. It was a crappy day anyway because it started with a loud and prolonged temper tantrum by LittleK. Her tantrums feel like physical and emotional assaults and it takes some time for us all to recover. This one was about her clothes... I will usually let her dress herself no matter how crazy it looks but not today, not a ragged blue cardigan underneath a red velvet dress with pink and white light-up shoes.
Healthwise, I did see the rheumatologist last week, and there was nothing new to talk about. He did say that how lupus affects an individual doesn't usually change over time. In other words, it's not likely that it will attack my nervous system or my kidneys - it will probably just attack my lungs and heart more, if and when it does flare again. I'll be seeing a PH specialist at the university hospital in Denver on the 12th, so who knows, it may be another ten days before I update this again. Thanks for checking in!

bring on the Christmas madness

Happy Thanksgiving to our family & friends! We're thankful you're a part of our lives.

We spent yesterday with Kim, Danny & their family. The food & company was great of course, there were very few kid-fights, some football watching and hours of card games. Everybody had a good time and got stuffed...
Time is winding down and it will soon be Moving Day for me and the two younger kids. I'm not exactly sure of the date yet but it may be around December 15th. K and T will join us in Anchorage just before Christmas. I haven't packed a thing and have only begun attacking the piles of clutter I have in each room so-
I'd better not waste any more time here huh?

pillllllllzzzzzzzz

This speaks for itself I think.
Not present for picture-day: Boniva & Guaifenisen.

HAPPY BIRTHDAY BABY!

R is one year old today! So we get to remember how crazy it was the week he was born, and realize how many things he's learned and experienced. Right now he's coming down from his first-ever sugar high.

I lost my.... Viagra

Yeah, that's right, I misplaced a bottle of Revatio, which is just a polite alternative name for Viagra, which I take for pulmonary hypertension. I know you're thinking, yeah, sure, Ginny...
Anyway, in my chaotic daily life as mom/chauffeur/really bad housekeeper, I somehow came up short about 40 Revatio pills. It's silly - I think I had them in the car one day, I think I threw away an empty (but was it?) bottle another day. So I called the specialty pharmacy to replace the missing medication, and found out my monthly supply of 90 pills would normally cost $900 !!!!!
Insurance pays for it, except for a $20 co-pay. Wow. I guess our insurance company rep was having a good-karma day because they decided to pay for my replacement stuff. I'm just a bit embarrassed cuz who's going to believe that I lost my Viagra...
Halloween's coming up. So is my birthday! LittleK wants to use her lion suit from 2 years ago, and T just wants to be a black cat. We found a panda suit for R's costume. I'll be the oxygen lady.
Speaking of oxygen, Lincare has set me up with a portable liquid O2 system. It just means that the little bag on my shoulder is much lighter, the supply lasts longer (8hrs), and it makes a loud PUFF noise when I inhale. The girls say it sounds like I'm spitting. The metal tanks are heavier, last about 4 hours, and only make a tiny 'click' when I breathe in.
T had her presentation today, about Chief Joseph. She (and I) made a poster, wrote out 9 facts on index cards, practiced, and argued over what to wear. She does well speaking in front of the class - this year it's just harder to understand her because she's mithing tho many teeth.
....laundry, dishes, messes beckon...

new niece!

I think I've fallen out of the habit of updating.
My sister just had a baby!!!! Welcome baby Delaney!
K's mom is home from a big trip to Europe, and she sounds like she's doing well after some difficulties on the way home. Time to heal.
The seasons have definitely changed... we have to wear socks and jackets every day now. I'm really tired of the wind, haha. In the car I crank up the heat until LittleK whines "MAMA I'M HOT!"
BabyR is cutting four teeth on the top and one on the bottom, all at once. Ouch, huh? I love his funny toothless grin but won't see it again unless he takes up hockey.
K is done with bow-hunting and now rifle season has started. Hooray. He has a race tomorrow morning (Silent Trails Memorial) during the girls' final soccer games. Then more hunting on Sunday.
I've got a clutter problem and I've been preoccupied with it lately, but not enough to do anything about it. It's just another way of heaping on the guilt, on top of all the mommy-guilt etc.
T has glasses (bifocals!) for reading and schoolwork. She lost them today and didn't tell me until nearly 5 o'clock, but the principal was still at the school and we made it there before she left. The glasses were in the coat closet. I can deal with T's problems so much better than LittleK's because K's whining just pushes the big anger button inside of me and I lose patience. She seems to be really horrible only around late afternoon, when she's fighting a nap.
I'm pretty much done with all the nasty steroid side-effects. I'm only on 2mg a day! I feel normal except for my hip and shoulder pain. My hair falls out in big fistfuls, hopefully that will stop soon.
What's funny is that it's been about 4 months of having oxygen all the time, and only three strangers have blurted out big nosy questions. One Safeway cashier practically yelled at me "What's wrong with you??". I told him I have heart & lung diseases, and I herded the kids out the door. Another (elderly) oxygen user at WalMart looked at me with a big sad face and said, "This? At your age? Awwww". I just laughed and said I was used to it. That same day, some teenager at Burger King yelled across the room "HEY why are you on OXYGEN??". I just told him I got sick. So I just have to remember how weird it must be to see some young-ish mom doing mom-stuff out in public wearing a nasal cannula and herding two chatty girls and a baby around.
Anyway, the only news on that front is that my appointment with the PH specialists in Denver will be December 12th. It seems so far away.
Time to go cuddle up in a blanket and knit.

altitude confusion

Bill-paying day. Now we have $500 propane payments every month on top of everything else...
I saw the cardiologist on the 26th and asked again about the altitude effects. He's the one who initially said I should move ASAP to somewhere with more oxygen in the air. Now he says the supplemental 02 I have is compensating for living at high altitude. So both K & I are confused. All four doctors seem to change their minds about it each time we see them! I'm still pretty much set on moving to Anchorage.
Tomorrow I have an appointment with the internist. Since my pulmonologist in Cheyenne is leaving private practice and cancelled my November 30th appointment, I'll see if this local guy will refer me to the PH specialists in Denver. I'm curious to see if they'll do a heart cath for an exact arterial pressure, and if there's a drug trial they might be able to enroll me in. It would be good to get their opinion on the altitude thing too.
Now to begin another playgroup/ballet/soccer day!

latest echo

I don't know why but my body's put the brakes on the pulmonary artery pressure decrease.

Last week my pressure came out at 79, which is still less than the 83 measured in late June. But I want it to be another 20 mmHg less, at least. I called the pulmonologist's office yesterday to find out if she wants to make medication dose changes... but they don't have the echo results yet! I'm very unimpressed.

The kids are doing great in school/soccer/ballet. T treats us all now & then with EasyBake desserts and LittleK loves to wah-wah on her teeny-tiny violin, so those birthday gifts were a good idea. BabyR's crawling and showing more personality. K's been hunting the 'One that Got Away'. I've been trying to knit a little and keep up with laundry. Winter hit us this weekend and I'm remembering just how much this house needs major weatherization work. I'm so COLD all the time!

My face is quite a bit less scary, thanks to only 5mg of prednisone a day. I'm alot more into my oxygen routine... so life is slowly reaching some stage of 'normal'.

survived this week

So the birthday party went great, thanks to everyone who celebrated with us, especially Gramma and Grampy who brought lots of salmon. The weather wasn't so great but we all had fun and stuffed ourselves. G/G stayed until yesterday to help me with the kids while K left for training in Florida. We miss you guys!!!!
T auditioned for the Nutcracker ballet on Monday. I think we'll know by next week if she's been chosen to be part of the cast. Soccer's going okay, although the whole thing is not as organized as past years, and T's coach isn't available until 615pm on T/Th - so we're there for LittleK at 530 and don't finish with T until 7! Girl Scouts will be fun this fall, T has a new troop with two great moms for leaders.
Tomorrow the girls have their physicals, and I have an echocardiogram. I hope we're all healthy. I'm really tired and can't wait for K to get back.
Tomorrow I'll post my pressures from the echo, so come on back!

all new, all good

T had a great first week of school. Right off the bat she has a three-day weekend so I'm letting the kids stay up late! The week or so before school started we tried to get out and do fun stuff but the weather was horrible. We did make it to the orientation for Little K's preschool and decided she may as well just go there again, until Christmas at least. No need for any big change at this point. I can still be a teacher's aide, bring snacks and make playdough.
After Labor Day, both girls will continue with ballet, start the new soccer session, the big joint birthday party happens, T has Day Camp at school, LittleK will start school on the 11th - which is the same day T joins a new Brownie Scout troop and also auditions for this year's production of the Nutcracker. My head may go spinning directly off of my body by the end of the week.
K is now in hunting mode so that means alot of single-parenting until he pulls into the driveway with a dead elk in the truck bed. I'm grateful for the meals it provides but the cost adds up with all the driving & time away. I'd almost rather buy a side of beef or fill up the freezer with bison meat from the farmers' market.

Today the kids and I bought more birthday party stuff and also printed up some of the pictures Grandpa J let me scan onto a CD a few years ago. Our living room has plenty of my relatives' photographs but none of K's... we also need Grandma R's family represented. I love old pictures.









This is K's Grandma Minnie on the left, with my Great-Grandma Ida on the right.

Thursday morning, K and I took the two younger kids to Cheyenne and we saw my doctors. The rheumatologist and I didn't have much to discuss - he had some labs done which we'll know results of next week. The pulmonologist answered many questions, including:

• what NYHA functional stage am I classified in? Stage I- Stage II (explanation here)
  
• should I be trying NAC (N-acetylcysteine)? No
• did I have sleep apnea back when we did my overnight pulse-ox test? No
• should I be tested for steroid-induced diabetes? Yes
• should I start Pulmonary Rehab? Yes (but it's not available in our town)
  
• did my lupus inflammation cause the fibrosis, in turn causing the hypertension? Yes, sort of...
• should I have a right heart catheterization done? No, not with my high pressure levels
• and of course, how long could I live? It's hard to say with lupus complicating things, but she thinks I have a good chance of surviving to see my kids head off to college!

Thursday was also the day we attended the funeral of a local assistant professor/pilot... and the night I was supposed to have a 'Girl's Night Out' with my friends, but I was wiped out by that time and the kids were bonkers anyway.
So there you have it. Things are looking up. One of the best things on Tuesday was being told I can now taper the prednisone down to 10 mg for two weeks starting Monday, then 5 mg after that, and possibly go off of it completely. Goodbye, 5 o'clock shadow!!

Info links, Walden pics

What is Pulmonary Hypertension?

What is ILD/Pulmonary Fibrosis?

Here are photos from Sunday morning at Walden, CO...

not so bleak

Happy Birthday W!!!!
I rescheduled my rheumatologist & pulmonologist appointments from yesterday to August 31st. K wanted to be there but had to fly all day yesterday. We were sort of confused about why they wanted me to have the appointments in the first place... I think I need to set up another echocardiogram (or maybe a right heart cath?) between now and the 31st, so the docs and I will have something to talk about.
I've been kinda flaky with my medicine. I also still go without the tube up my nose once in awhile. I could probably eat healthier food... but at least I got a start on the exercise idea. I bought a jogging stroller to walk R around our neighborhood loop, which is a dirt road not compatible with the mini-stroller I use everywhere else. Our friend offered me her jogging stroller, so I took the other one back to the store. Now I just need to replace the inner tube on the friend's stroller. Maybe someday soon my thigh and butt muscles will make a reappearance.
This past week I got onto a web-board for people with pulmonary hypertension. http://www.phcentral.org Some of the people there have been surviving for 5 or more years since diagnosis! So that gives me some hope- especially with the newer medications that are coming out, Tracleer and Thelin.
We've been gearing up for school and for birthday parties. I still haven't enrolled LittleK anywhere, but her old school has her on their roster. We may keep her there, but I just don't know if I want to be that involved anymore. I did get the girls signed up for soccer. It'll be LittleK's first year and T's third I think.
That's about all of the really fascinating stuff going on around here.

Tooth!

R has a tooth! It's his lower left front tooth, and it cut through either yesterday or the day before. Three months of unbelievable drooliness has finally resulted in something!
He's also finding out how to pull himself around the floor while on his tummy, but he's had a few head-vs-floor incidents so he's a little nervous about going from sitting to combat-crawling on the hardwood. His chicken pox scabs have mostly gone away - there are a few spots on his chest that might scar but at least we got through the whole ordeal without much pain.
I actually had some energy and motivation to take care of some annoying little things around the house yesterday (after playgroup, lunch, swimming, bill-paying, etc.). I weeded the little rock-pile next to the driveway, scrubbed R's high chair, helped the girls put their clothes away, and dusted a bit.
Today I'll be taking old clothes and shoes to the Salvation Army (finally!) and I might even start on the playroom... or I might not. What I'd like to do is somehow pull out the dead tree stumps in the front yard, along with all the metal tree-stakes. Work has stalled on the backyard. K said he doesn't know what he's going to do with it next. I'd be happy with just seeding part of it and putting down a few flagstones. And a swingset!

Summer days

Sorry for the long blog-break.
Towards the end of July, K bought two kayaks and we took them out a couple of times. We had a blast!

Other happenings: K took the girls camping, I took the kids to Cheyenne Frontier Days (parade, carnival rides), T got her loooooong hair cut and donated it to Locks of Love, R got chicken pox, a heat wave came and went, and K's baseball season ended.

Today we're going to see another kid movie at the Wyo theater, then check out the county fair Family Fun Night. I hear they'll have free admission, free food, and pig-wrestling. K's flying until 9 tonight so he'll be sorry he missed the pig-wrestling I'm sure.


No news health-wise... my face is a little less huge, and I've been cheating with the oxygen, leaving it off a few hours now & then. I feel fine. My next appointments in Cheyenne were rescheduled from August 1st to the 16th. I emailed ANMC in Anchorage, asking about their pulmonology department. They replied that they do have a pulmonologist on staff, and they coordinate/refer lung transplants through the University of Washington hospital in Seattle. Good to know.