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.