I've been thinking about writing a new entry but haven't gotten around to it until now.
K took the girls camping, so baby and I are enjoying the peace and quiet. Except I'm doing laundry at midnight so it's not really that quiet.
We had a really nice weekend - Saturday we spent at Rob Roy Reservoir boating and kayaking with K's work friends. T still loves to paddle a kayak, LittleK still whines and cries and needs to pee as soon as she's in a boat far from the shore. Baby liked the wind in his face when we took the kids out in the inflatable boat... but it wasn't long before he was whining and crying too.
Sunday was baseball day, at the CSU field in Fort Collins. It was too hot there so I took the kids to the play area at the mall. We got back to the field in time to visit with friends and see the end of the game, another devastating loss for the SkySox.
Since then we've just been doing the routine: ballet, playgroup, wading pool at the park, and now waiting for payday so I can pay bills. Thursday I'll have another echo, Friday I'll see the internist.
I'm adjusting to the portable O2 pretty well. I hate the shoulder bag that comes with the tank, it flips upside down if some stupid snap isn't on right and it's just not balanced. Today I shopped around for a replacement and found a backpack with enough room for the O2 tank, all of R's baby stuff, and my junk too! It even has an MP3-cord-hole I can put the cannula tubing through. I guess the oxygen suppliers prefer NOT to start people out on liquid oxygen because of the hassle and expense... so I'll live with the metal tanks for now.
Healthwise I've been mostly okay - except the leg pains I had from the poison-antibiotic Levaquin have come back. I've had to take more Darvocet and even that sometimes hasn't helped. The pain seems to be worse if I've been sitting or lying down for a long time. It's an intense, throbbing feeling in the tendons of my right knee and left ankle, like they're going to explode... it makes me feel helpless enough to just cry, and it can last for hours or just five minutes.
Tuesday, June 27, 2006
Wednesday, June 21, 2006
Dinosaur Puppets
Guess what? K is gone for yet another overnight trip to Jackson. The girls are all mixed up now about when he's supposed to be home and how long he'll be staying home when he gets back.
We were lazy bums today until K left, then we cleaned ourselves up and headed to the park for a couple of hours. The girls got to ride their bikes and run around barefooted until we all started getting hungry... which was about the same time the rain started coming down. Dumbo from Netflix was waiting for us at home, a convenient reward for half an hour of no fighting.
Monday I made it to the knitting group. The one man-knitter who goes there is stitching up a bikini for the shop's big bikini display. Tuesday we went to playgroup, and to the library for a big dinosaur-puppet show. There was a huge crowd of moms & kids. The kids had a blast watching and listening to the dino-guy who'd made 20-foot long dinosaur skeleton puppets out of foam and cardboard. There were some moms I knew there who either didn't recognize me or didn't feel comfortable approaching me and my big round oxygen-tubed face. I still forget how different I must look! Next week I can go down to 20mg of prednisone. yay for me
People have asked if this oxygen is helping. I really don't notice any difference. When I take it off just to have a break, I don't feel any worse. If anything has changed, it's all the PICKING I have to do from having a dried-out, blocked-up nose. Yuk! I actually seem to do more mouth-breathing with the oxygen on than without. June 29th, I'll have my next echocardiogram and hopefully my pressure will have gone down.
I'm about to fall asleep on this keyboard so I'd better head to bed.
We were lazy bums today until K left, then we cleaned ourselves up and headed to the park for a couple of hours. The girls got to ride their bikes and run around barefooted until we all started getting hungry... which was about the same time the rain started coming down. Dumbo from Netflix was waiting for us at home, a convenient reward for half an hour of no fighting.
Monday I made it to the knitting group. The one man-knitter who goes there is stitching up a bikini for the shop's big bikini display. Tuesday we went to playgroup, and to the library for a big dinosaur-puppet show. There was a huge crowd of moms & kids. The kids had a blast watching and listening to the dino-guy who'd made 20-foot long dinosaur skeleton puppets out of foam and cardboard. There were some moms I knew there who either didn't recognize me or didn't feel comfortable approaching me and my big round oxygen-tubed face. I still forget how different I must look! Next week I can go down to 20mg of prednisone. yay for me
People have asked if this oxygen is helping. I really don't notice any difference. When I take it off just to have a break, I don't feel any worse. If anything has changed, it's all the PICKING I have to do from having a dried-out, blocked-up nose. Yuk! I actually seem to do more mouth-breathing with the oxygen on than without. June 29th, I'll have my next echocardiogram and hopefully my pressure will have gone down.
I'm about to fall asleep on this keyboard so I'd better head to bed.
Friday, June 16, 2006
If my world were perfect...
prednisone would come with a year's supply of hair removal stuff or complimentary visits to the laser hair removal day salon/spa
oxygen suppliers would give out free bottles of nasal saline spray and boxes of Puffs Plus
lungs, kidneys, hearts would be indestructible
I'd have a remote control for my three-year-old for when the whining starts
grocery stores would employ Parking Lot Babysitters so moms could run in for that all-important five-minute purchase
the husband would have a little switch in the back of his head to go from 'silent' to 'communication mode'
oxygen suppliers would give out free bottles of nasal saline spray and boxes of Puffs Plus
lungs, kidneys, hearts would be indestructible
I'd have a remote control for my three-year-old for when the whining starts
grocery stores would employ Parking Lot Babysitters so moms could run in for that all-important five-minute purchase
the husband would have a little switch in the back of his head to go from 'silent' to 'communication mode'
Monday, June 12, 2006
Appointment Day
Over the weekend K was able to patch up the section of roof that was peeling off, mow the front yard, and mow the leach field out back. He also did alot of front-yard baseball with the girls, and we all went to Greeley on Sunday for his real baseball game. Then he let me know in his own subtle way that he'd be leaving for a 3-day trip to Jackson.
So he was able to make it to Cheyenne with me and baby for my appointment today before the Jackson flight. This time I saw the rheumatologist, who made some adjustments in my medication dosages and explained some high and low lab values. He said my lupus flare is pretty much over, and now we need to focus on my lung problems. There was no discussion this time about moving to a lower altitude... That can wait a bit longer.
I got a prescription for Boniva, which is to fight osteoporosis, another side effect of the prednisone. When I filled the prescriptions later today at Safeway, I paid a total of $70 for 4 meds - then got home and realized that the ONE Boniva pill costs $40!!!! It's one pill, in a fold-out cardboard holder, to be taken once a month... and it costs about what I've paid to have my hair done in the last year! (my hair looks like crap) There was a $20 coupon with it but the pharmacist couldn't get the computer to accept it.
Somewhere between the appointment, picking up the girls, getting T to her new ballet class, saying goodbye to K, and getting dinner together, I made it to the oxygen place to get set up with the full-time O2 stuff. It turned into one of those moments of realizing I had never, ever imagined myself doing what I was doing. Refereeing two cat-fighting daughters and bouncing a baby around, while fitting tubes in my nose and a portable oxygen pack on my shoulder was just... bizarre.
So now I'm enjoying a little peace while the kids sleep. Tomorrow starts early with soccer camp for T and ballet for LittleK, then playgroup and an attempt at laundry.
So he was able to make it to Cheyenne with me and baby for my appointment today before the Jackson flight. This time I saw the rheumatologist, who made some adjustments in my medication dosages and explained some high and low lab values. He said my lupus flare is pretty much over, and now we need to focus on my lung problems. There was no discussion this time about moving to a lower altitude... That can wait a bit longer.
I got a prescription for Boniva, which is to fight osteoporosis, another side effect of the prednisone. When I filled the prescriptions later today at Safeway, I paid a total of $70 for 4 meds - then got home and realized that the ONE Boniva pill costs $40!!!! It's one pill, in a fold-out cardboard holder, to be taken once a month... and it costs about what I've paid to have my hair done in the last year! (my hair looks like crap) There was a $20 coupon with it but the pharmacist couldn't get the computer to accept it.
Somewhere between the appointment, picking up the girls, getting T to her new ballet class, saying goodbye to K, and getting dinner together, I made it to the oxygen place to get set up with the full-time O2 stuff. It turned into one of those moments of realizing I had never, ever imagined myself doing what I was doing. Refereeing two cat-fighting daughters and bouncing a baby around, while fitting tubes in my nose and a portable oxygen pack on my shoulder was just... bizarre.
So now I'm enjoying a little peace while the kids sleep. Tomorrow starts early with soccer camp for T and ballet for LittleK, then playgroup and an attempt at laundry.
Friday, June 09, 2006
comings and goings
Big news today: K is HOME!!!!! Welcome Home Honey!!!
After almost a whole month without him, the kids have their dad back... so we're all happy about that but now Gramma and Grampy have to leave us. They've been supportive and helpful in every possible way - Thank You, Mom & John
I didn't get a call from the oxygen provider today so I guess I'll start the full-time O2 on Monday. I'm not looking forward to wearing a nasal cannula all the time and carrying a tank everywhere. I wonder if I'll ever be off oxygen.
p.s. my face is not as huge as it used to be but it could still use a good shave or another Nair treatment!!! EW!!
After almost a whole month without him, the kids have their dad back... so we're all happy about that but now Gramma and Grampy have to leave us. They've been supportive and helpful in every possible way - Thank You, Mom & John
I didn't get a call from the oxygen provider today so I guess I'll start the full-time O2 on Monday. I'm not looking forward to wearing a nasal cannula all the time and carrying a tank everywhere. I wonder if I'll ever be off oxygen.
p.s. my face is not as huge as it used to be but it could still use a good shave or another Nair treatment!!! EW!!
Thursday, June 08, 2006
oxygen oxygen oxygen
Today we loaded up the minivan and headed to Cheyenne for a picnic in the park by the Botanical Gardens. After that, Grampy and the girls walked through the gardens while Mom, baby and I went to my doctor's appointment.
The doctor was thrilled at how much and how quickly my pulmonary arterial pressure went down. I guess all 3 docs were sort of freaked out at the 113... Today she said it's possible and it would be great to get that number down to the 50's or 60's. She also said that 24-hr oxygen won't make up for all the negative effects of living at 7200', so moving to a lower altitude would be a good idea. My O2 sat was low enough today that now I have to be on oxygen 24/7. Hooray.
Mom got to ask her some questions, hard questions about life expectancy and the whole altitude thing. There's no real answer right now as far as life expectancy but the positives according to Dr. B. are that I'm young, and that I don't have primary pulmonary hypertension but secondary.
The good news is that I can taper this prednisone down to 20 in a couple of weeks. Hooray!
The doctor was thrilled at how much and how quickly my pulmonary arterial pressure went down. I guess all 3 docs were sort of freaked out at the 113... Today she said it's possible and it would be great to get that number down to the 50's or 60's. She also said that 24-hr oxygen won't make up for all the negative effects of living at 7200', so moving to a lower altitude would be a good idea. My O2 sat was low enough today that now I have to be on oxygen 24/7. Hooray.
Mom got to ask her some questions, hard questions about life expectancy and the whole altitude thing. There's no real answer right now as far as life expectancy but the positives according to Dr. B. are that I'm young, and that I don't have primary pulmonary hypertension but secondary.
The good news is that I can taper this prednisone down to 20 in a couple of weeks. Hooray!
Wednesday, June 07, 2006
Settling back in
Today's exciting news: babyR ate real food!!! He finally was able to keep some pureed peas in his mouth and actually swallow the stuff! So we'll be buying more of the 50cent jars of food than we will of the $25 cans of formula.
Last night we got back from Albuquerque. Everyone had a great time - but 12 hours each way in a minivan with three kids in crazy HOT weather is just something to do maybe once every other year. Add to that a three-year-old announcing "I HAVE TO POOOOOOOP!" every hour and never once actually pooping...
Aunt Wanda lives in a great big, new, air-conditioned house with a giant master bedroom she gave up for me and the kids to sleep in. She and her extended family are generous, big-hearted people. All the relatives were happy to see each other and we shared good meals, good conversation and some fun times shopping & going to the aquarium and botanical gardens. The kids had fun, everyone loved baby.
Last Friday at the circus we had a good time, too. It's a bit strange trying to maintain the "Oh we're having so much fun aren't we kids?" sense of wonder when you're the parent forking out the bucks after getting "free" tickets & wondering how all the performers can work that hard for probably next to nothing. The girls had fun, baby fell asleep in spite of the noise and heat, Gramma and Grampy helped keep spirits up - especially when I, Mama Grinch, refused to stand in line forever to pay for an elephant ride. It's amazing how kids can instantly forget how much fun they had in the past two hours when you disappoint them at the end of some event. "Wasn't that cotton candy delicious?" "I WANT TO RIDE ON THE ELEPHANT!!!!"
No new health problems... I have some scars & bruises that won't heal, mostly on my feet, and I think they make anyone who sees them gross out. Decreasing the prednisone has taken away a bunch of that crazy energy I had a while back, and my appetite isn't what it was either. Tomorrow I'll find out if the doctor wants me back up to 40 mg a day. And if she's mad that I decreased the dose on my own. And other stuff.
Last night we got back from Albuquerque. Everyone had a great time - but 12 hours each way in a minivan with three kids in crazy HOT weather is just something to do maybe once every other year. Add to that a three-year-old announcing "I HAVE TO POOOOOOOP!" every hour and never once actually pooping...
Aunt Wanda lives in a great big, new, air-conditioned house with a giant master bedroom she gave up for me and the kids to sleep in. She and her extended family are generous, big-hearted people. All the relatives were happy to see each other and we shared good meals, good conversation and some fun times shopping & going to the aquarium and botanical gardens. The kids had fun, everyone loved baby.
Last Friday at the circus we had a good time, too. It's a bit strange trying to maintain the "Oh we're having so much fun aren't we kids?" sense of wonder when you're the parent forking out the bucks after getting "free" tickets & wondering how all the performers can work that hard for probably next to nothing. The girls had fun, baby fell asleep in spite of the noise and heat, Gramma and Grampy helped keep spirits up - especially when I, Mama Grinch, refused to stand in line forever to pay for an elephant ride. It's amazing how kids can instantly forget how much fun they had in the past two hours when you disappoint them at the end of some event. "Wasn't that cotton candy delicious?" "I WANT TO RIDE ON THE ELEPHANT!!!!"
No new health problems... I have some scars & bruises that won't heal, mostly on my feet, and I think they make anyone who sees them gross out. Decreasing the prednisone has taken away a bunch of that crazy energy I had a while back, and my appetite isn't what it was either. Tomorrow I'll find out if the doctor wants me back up to 40 mg a day. And if she's mad that I decreased the dose on my own. And other stuff.
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