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!
Wednesday, May 16, 2007
Wednesday, May 09, 2007
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.
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.
Friday, April 27, 2007
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.
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.
Wednesday, March 28, 2007
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!
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!
Thursday, March 15, 2007
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!
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!
Wednesday, March 07, 2007
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.
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.
Sunday, February 25, 2007
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.
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.
Sunday, February 11, 2007
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!!!!!!!"
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!!!!!!!"
Thursday, February 08, 2007
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.
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.
Saturday, February 03, 2007
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.
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.
Friday, January 19, 2007
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.
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.
Sunday, January 14, 2007
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...
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...
Friday, January 05, 2007
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.
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.
Tuesday, December 26, 2006
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!
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!
Wednesday, December 20, 2006
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.
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.
Monday, December 04, 2006
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!
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!
Saturday, December 02, 2006
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!
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!
Friday, November 24, 2006
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?
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?
Tuesday, November 14, 2006
pillllllllzzzzzzzz
This speaks for itself I think.
Not present for picture-day: Boniva & Guaifenisen.
Sunday, November 12, 2006
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.
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