Hi Friends...
This will be quick as Cameron is waiting for his turn on the netbook, and the little kids need to be put to bed. Today we started out the day going to church, and that felt really good! All of the kids are really enjoying their Sunday school classes and Youth Group at Gold Coast Christian Church. After church we ate lunch and Bill took a nap.
I got a bunch of stuff today from www.freecycle.org. Check and see if they have a group in your area. Basically, people post stuff that they want to give away, and you respond by e-mail, and then go pick it up. Today I made 2 Freecycle stops -- both within 5 minutes of our house, and I got lots of good free stuff -- like a bag of new stuffed animals, clothes for me and Molly, a jacket for Cameron, 8 board games, a Christmas comforter set, and some twin sheet sets. I LOVE FREE!!!! And of course, you can post stuff you want to give away, too -- and people will come and pick it up. It's great. And now with my new cell phone, I get my e-mail as soon as it comes in and so I can respond right away which equals more free stuff!
After I came back from my second Freecycle run of the day, Bill got up and took the boys shopping. They went to Big 5 and got killer deals on skateboards, so it was "the best day ever!" They also went grocery shopping at Wal-Mart. I took a 2 hour nap, and it felt great. I woke up just as they were coming home.
We helped Bill unpack, and then he went to one more grocery store ALONE -- I can't imagine why he didn't want helpers? I just hung around the house with the kids. When he got home, we had pizza for dinner. Then Cam and I worked on an English project. He had to do a literary analysis of something written during the Harlem Renaissance. He chose an essay by Langston Hughes. I was an English minor and I love that kind of thing, so I helped him out. We got done in about 1 1/2 hours, which was pretty good for a 9 paragraph essay. We had fun together, and I think he learned something, too!
That's all for today... I'm looking forward to a good week...I'm going to visualize the Cellcept protecting my organs, tissues, joints, etc. from the lupus. I am the LUPUS WARRIOR! And I will kick its butt!
More tomorrow...
Much Love,
Michele
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Sunday, February 28, 2010
Saturday, February 27, 2010
FRIDAY AND SATURDAY:-0
Hi friends!
Yesterday, the cleaners came, and it always makes me SO happy when they transform my house from a big mess to heavenly clean:-) They came in the morning and so, we had an early start on homeschooling. We were even done early enough to go to the park before I had to go pick up Cam from school at 3 p.m. I walked around the park while the kids played tennis. It felt nice to get some exercise again -- it had definitely been too long. I tried not to overdo it, though -- only did the big circle 4 times, that's probably only 1 mile. But it's a start.
While picking up Cam from school yesterday, we saw Bill on his way to Urgent Care with an ear infection. He got some meds and will hopefully be feeling better soon! When I got home from the school pick-up, I realized our freezer in the garage had been left open (by me, so I can't blame anyone!). I had to do damage control and decide what to throw away, what was still frozen, and what had dethawed and needed to be cooked right away! That was fun. But at least I discovered it while most of the food was still able to be salvaged!
I was really tired last night and went to bed early. Maybe it was the exercise! Today we slept in, and then my nurse came by at noon to do my vitals (yes, I'm still alive!) and change my PICC line dressing.
This afternoon I went on an outing with Cameron to spend his birthday money. First, we ate lunch at In 'N Out Burger. Thanks, Annie! Then we went to Target (where he bought a watch) and to GameStop (where he bought styluses and a Pokemon game). We also preordered his Pokemon Soul Silver Game. It will be in on March 14th at midnight. I think I'll send Bill with him to get it. I don't want to go anywhere (especially GameStop) at midnight on a Saturday:-( Anyway, Cam still has a bunch of money left, and it was fun to spend the time with him. He really is an awesome kid!
Since I got home, I've been puttering around the house -- doing laundry, e-mail, and other various things. Bill is currently making roast beef and mashed potatoes for dinner. It smells great! My head is killing me, so I'm going to sign off and go do ABSOLUTELY NOTHING!!!
More tomorrow...
Much Love,
Michele
Yesterday, the cleaners came, and it always makes me SO happy when they transform my house from a big mess to heavenly clean:-) They came in the morning and so, we had an early start on homeschooling. We were even done early enough to go to the park before I had to go pick up Cam from school at 3 p.m. I walked around the park while the kids played tennis. It felt nice to get some exercise again -- it had definitely been too long. I tried not to overdo it, though -- only did the big circle 4 times, that's probably only 1 mile. But it's a start.
While picking up Cam from school yesterday, we saw Bill on his way to Urgent Care with an ear infection. He got some meds and will hopefully be feeling better soon! When I got home from the school pick-up, I realized our freezer in the garage had been left open (by me, so I can't blame anyone!). I had to do damage control and decide what to throw away, what was still frozen, and what had dethawed and needed to be cooked right away! That was fun. But at least I discovered it while most of the food was still able to be salvaged!
I was really tired last night and went to bed early. Maybe it was the exercise! Today we slept in, and then my nurse came by at noon to do my vitals (yes, I'm still alive!) and change my PICC line dressing.
This afternoon I went on an outing with Cameron to spend his birthday money. First, we ate lunch at In 'N Out Burger. Thanks, Annie! Then we went to Target (where he bought a watch) and to GameStop (where he bought styluses and a Pokemon game). We also preordered his Pokemon Soul Silver Game. It will be in on March 14th at midnight. I think I'll send Bill with him to get it. I don't want to go anywhere (especially GameStop) at midnight on a Saturday:-( Anyway, Cam still has a bunch of money left, and it was fun to spend the time with him. He really is an awesome kid!
Since I got home, I've been puttering around the house -- doing laundry, e-mail, and other various things. Bill is currently making roast beef and mashed potatoes for dinner. It smells great! My head is killing me, so I'm going to sign off and go do ABSOLUTELY NOTHING!!!
More tomorrow...
Much Love,
Michele
Friday, February 26, 2010
CAMERON'S BIRTHDAY WAS FUN!!!
Hi Friends,
So, yesterday was all about Cameron and his 17th birthday. We decorated the house with birthday banners (solar system/space theme), balloons, and crepe paper. The homeschoolers did a great job. They also helped me make his cake, and they did all of Cameron's chores for him as a special treat on his birthday! When I brought Cameron home from school, they all jumped out and played "Happy Birthday" music, yelling "surprise!" Cameron was happy and even let them all hug him.
He had a good day at school yesterday and was happy with the decorations. Last night Annie, Amber and Matthew came over for cake and to watch Cameron open his presents. That was fun, but a little chaotic! I had to take some pain killers and a xanax by the time it was all said and done! The cake was a hit, and I think Cam was happy with all of his presents. He got cash from both sets of grandparents. From Bill and I, he got a gift card to Target and we're preordering a new Pokemon DS game, Soul Silver, so that he'll have it on 3/14 when it comes out. Molly, Nate, and Isaac used their own allowances to buy him presents. Molly got him a shirt with the Owl on it that says "Give a Hoot, Don't Pollute!" Nate got Cameron the movie, "Free Willy," and Isaac got him "Flipper." We went with an animal theme for presents as Cameron is into animals (that's his current career goal) and we're also going to the zoo for his birthday activity later in the month. And, Annie made Cam's day by bringing him a pair of jeans and a gift card for In and Out Burger. (I noticed this morning when Cam left for school, he was wearing his new shirt and jeans!)
After cake and presents, we sent Amber and Matthew home. And we went out to Burger King (Cameron's choice) for dinner. That went well and was fun EXCEPT for when Isaac puked! I think he just ate too much -- chocolate chip cookie cake and potato chips at home, and then a big burger, fries, and a "suicide soda" (all the sodas from the soda machine mixed up together!) -- anyway soon enough it all came up. We had to get him and the area cleaned up and keep the other kids from sympathetic vomiting! But we managed. You have to love being the parents!
By the time we got home, it was almost bedtime for the little kids. We were all tired. And I was in bed by midnight. This morning, Cam asked me to make him eggs -- so I got up and did that. And now I'm just puttering around the house, doing stuff, and waiting for the cleaners. Nate is still asleep -- I think yesterday wore him out. When he wakes up, we'll start school.
More later...
Much Love,
Michele
So, yesterday was all about Cameron and his 17th birthday. We decorated the house with birthday banners (solar system/space theme), balloons, and crepe paper. The homeschoolers did a great job. They also helped me make his cake, and they did all of Cameron's chores for him as a special treat on his birthday! When I brought Cameron home from school, they all jumped out and played "Happy Birthday" music, yelling "surprise!" Cameron was happy and even let them all hug him.
He had a good day at school yesterday and was happy with the decorations. Last night Annie, Amber and Matthew came over for cake and to watch Cameron open his presents. That was fun, but a little chaotic! I had to take some pain killers and a xanax by the time it was all said and done! The cake was a hit, and I think Cam was happy with all of his presents. He got cash from both sets of grandparents. From Bill and I, he got a gift card to Target and we're preordering a new Pokemon DS game, Soul Silver, so that he'll have it on 3/14 when it comes out. Molly, Nate, and Isaac used their own allowances to buy him presents. Molly got him a shirt with the Owl on it that says "Give a Hoot, Don't Pollute!" Nate got Cameron the movie, "Free Willy," and Isaac got him "Flipper." We went with an animal theme for presents as Cameron is into animals (that's his current career goal) and we're also going to the zoo for his birthday activity later in the month. And, Annie made Cam's day by bringing him a pair of jeans and a gift card for In and Out Burger. (I noticed this morning when Cam left for school, he was wearing his new shirt and jeans!)
After cake and presents, we sent Amber and Matthew home. And we went out to Burger King (Cameron's choice) for dinner. That went well and was fun EXCEPT for when Isaac puked! I think he just ate too much -- chocolate chip cookie cake and potato chips at home, and then a big burger, fries, and a "suicide soda" (all the sodas from the soda machine mixed up together!) -- anyway soon enough it all came up. We had to get him and the area cleaned up and keep the other kids from sympathetic vomiting! But we managed. You have to love being the parents!
By the time we got home, it was almost bedtime for the little kids. We were all tired. And I was in bed by midnight. This morning, Cam asked me to make him eggs -- so I got up and did that. And now I'm just puttering around the house, doing stuff, and waiting for the cleaners. Nate is still asleep -- I think yesterday wore him out. When he wakes up, we'll start school.
More later...
Much Love,
Michele
Thursday, February 25, 2010
HAPPY 17TH BIRTHDAY CAMERON:-)
Hi Friends,
Today is Cameron's 17th Birthday. I can't believe my first baby is 17 already! I'm so proud of the young man we've raised, though. He's an awesome person. If you want to call him to wish him a Happy Birthday, his cell phone is 805/630-9728 and he's done with school at 3:20. The homeschoolers and I are working on decorating the house for his birthday today. We also need to make his birthday cake and I need to run over to Wal-Mart for last-minute birthday gifts and balloons!
Yesterday, after I blogged -- I went and picked up Cam from school. Even though it was raining, the drive went better. Except that I had a killer headache and couldn't take any Dilaudid until I was done with my driving for the day! But as soon as I got home and verified that Bill was on his way to take me to the doctor -- I took the pain meds and they, at least -- dulled the pain a bit.
We collected all the kids who were playing at friends' houses and Cam and Molly watched the younger ones during my doctor's appointment. Bill took me (was glad he drove, lots of accidents in the rain!!!) and we finally have a treatment plan. Dr. Karpouzas and Dr. Cohen have agreed -- we are going to give CellCept 2-3 months to work. CellCept is the experimental drug for lupus patients. It's usually given to organ recipients to keep them from rejecting their organs.
So, I have a reprieve on chemo, and hopefully the CellCept will bring on a remission. I am moving up quickly to the maximum dose, which is 3,000 mg per day. I am also tapering off the steroids -- Thank God! All other meds will stay the same. I think I feel good about the decision. I basically asked Bill and the doctors to make it since I'm the one with the broken brain! I was wary about doing chemo again, because I end up going from an over-active immune system to no immune system. And then I catch every infection and keep ending up in the hospital. But my bloodwork wasn't good this time either. So, hopefully we made the right decision and this less invasive treatment will work! Just keep praying, please!
Last night, we made it back to Oxnard in time for Nate and Molly to go to Youth Group at church. They were pleased. We left Cameron home alone, so he was pleased to have some time to himself, too. And Isaac got a special treat because Bill, Isaac, and I went and grabbed some dinner after dropping off Nate and Molly. Then we stopped at the 99 cents store for birthday decorations and headphones for all of our new phones. We got home, unpacked, and it was time for Bill to pick up the kids from church. Then soon enough it was bedtime.
So, for today -- it's all about the birthday!!! I'll try to take some pictures and post them on Facebook later in the week. Have a great day:-)
Much Love,
Michele
Today is Cameron's 17th Birthday. I can't believe my first baby is 17 already! I'm so proud of the young man we've raised, though. He's an awesome person. If you want to call him to wish him a Happy Birthday, his cell phone is 805/630-9728 and he's done with school at 3:20. The homeschoolers and I are working on decorating the house for his birthday today. We also need to make his birthday cake and I need to run over to Wal-Mart for last-minute birthday gifts and balloons!
Yesterday, after I blogged -- I went and picked up Cam from school. Even though it was raining, the drive went better. Except that I had a killer headache and couldn't take any Dilaudid until I was done with my driving for the day! But as soon as I got home and verified that Bill was on his way to take me to the doctor -- I took the pain meds and they, at least -- dulled the pain a bit.
We collected all the kids who were playing at friends' houses and Cam and Molly watched the younger ones during my doctor's appointment. Bill took me (was glad he drove, lots of accidents in the rain!!!) and we finally have a treatment plan. Dr. Karpouzas and Dr. Cohen have agreed -- we are going to give CellCept 2-3 months to work. CellCept is the experimental drug for lupus patients. It's usually given to organ recipients to keep them from rejecting their organs.
So, I have a reprieve on chemo, and hopefully the CellCept will bring on a remission. I am moving up quickly to the maximum dose, which is 3,000 mg per day. I am also tapering off the steroids -- Thank God! All other meds will stay the same. I think I feel good about the decision. I basically asked Bill and the doctors to make it since I'm the one with the broken brain! I was wary about doing chemo again, because I end up going from an over-active immune system to no immune system. And then I catch every infection and keep ending up in the hospital. But my bloodwork wasn't good this time either. So, hopefully we made the right decision and this less invasive treatment will work! Just keep praying, please!
Last night, we made it back to Oxnard in time for Nate and Molly to go to Youth Group at church. They were pleased. We left Cameron home alone, so he was pleased to have some time to himself, too. And Isaac got a special treat because Bill, Isaac, and I went and grabbed some dinner after dropping off Nate and Molly. Then we stopped at the 99 cents store for birthday decorations and headphones for all of our new phones. We got home, unpacked, and it was time for Bill to pick up the kids from church. Then soon enough it was bedtime.
So, for today -- it's all about the birthday!!! I'll try to take some pictures and post them on Facebook later in the week. Have a great day:-)
Much Love,
Michele
Wednesday, February 24, 2010
WET WEDNESDAY....
Hi Friends,
It's raining, it's pouring...here in the usually sunny Southern Caliornia:-( I decided to blog now as I think the rest of the day will soon get away from me. The kids got up earlier than usual today -- by 8 a.m. and were done with their homeschooling by 1 p.m. We spent a lot of time today making decorations for Cameron's 17th birthday, which is tomorrow. We will hang the decorations tomorrow while he is at school, so that he has a big surprise when he gets home!
I need to go pick up Cameron in an hour and am hoping to do my daily Bible reading before then, too. After picking up Cam and returning him home, Bill is going to take me to my 5:00 appointment with Dr. Cohen. I am really hoping that we will decide on a treatment plan for me. Not knowing is very stressful!
We also need to pick up presents for Cameron tonight and crepe paper and balloons to add to his birthday decorations -- not that we're leaving things to the last minute or anything! But he's pretty easy to please, tomorrow night he wants to go to Burger King for his birthday dinner, and I'm making him my famous chocolate chip cookie birthday cake. He requests it every year. The homeschoolers will help me make it tomorrow and I'll post pictures on FaceBook, I'm sure.
Nate and Molly also want to go to the Youth Group tonight at 6:30 at our new church. So, hopefully we'll be back from Thousand Oaks in time.
Anyway, I'll blog more tomorrow...
Much Love,
Michele
It's raining, it's pouring...here in the usually sunny Southern Caliornia:-( I decided to blog now as I think the rest of the day will soon get away from me. The kids got up earlier than usual today -- by 8 a.m. and were done with their homeschooling by 1 p.m. We spent a lot of time today making decorations for Cameron's 17th birthday, which is tomorrow. We will hang the decorations tomorrow while he is at school, so that he has a big surprise when he gets home!
I need to go pick up Cameron in an hour and am hoping to do my daily Bible reading before then, too. After picking up Cam and returning him home, Bill is going to take me to my 5:00 appointment with Dr. Cohen. I am really hoping that we will decide on a treatment plan for me. Not knowing is very stressful!
We also need to pick up presents for Cameron tonight and crepe paper and balloons to add to his birthday decorations -- not that we're leaving things to the last minute or anything! But he's pretty easy to please, tomorrow night he wants to go to Burger King for his birthday dinner, and I'm making him my famous chocolate chip cookie birthday cake. He requests it every year. The homeschoolers will help me make it tomorrow and I'll post pictures on FaceBook, I'm sure.
Nate and Molly also want to go to the Youth Group tonight at 6:30 at our new church. So, hopefully we'll be back from Thousand Oaks in time.
Anyway, I'll blog more tomorrow...
Much Love,
Michele
Tuesday, February 23, 2010
A QUICK HELLO...
Hi Friends...
Just time to say hello and touch base briefly as I promised Cam he could use the netbook before bedtime. And I'm currently sitting in the dark between Nate and Isaac's bed to encourage them to fall asleep quickly.
Today was a good day... after Bill and Cam left for work and school, I puttered around the house, did my Bible readings and prayers, and generally enjoyed the quiet time. By 9 a.m., my homeschoolers were up and joining me for breakfast. We did some schoolwork through the morning, and at noon Molly took the boys to the park while I took a bath. Since I have a PICC line and a Fentanyl patch, I get to bathe every 3 days when the patch gets changed. This is how I've learned to appreciate the little things in life, like a bath! Anyway, they had recess at the park, I got cleaned up, and we were all happy!
Also, I have been having a great time on FaceBook. I've reconnected with friends and family, and now I've even reconnected with my former principal and colleagues from WAY BACK WHEN in Pensacola, FL when I worked at St John's as a first grade teacher. And now I've connected with a bunch of my former 1st grade students who are now in their 20's. Talk about a pleasant blast from the past!
Anyway -- after lunch, recess, and my all-important bath, we worked on schoolwork and finished up by 3 p.m. At that point, I went to pick up Cameron from high school. I've been able to cut down on Dilaudid and that means I am sometimes safe to drive. So, the good news was -- I was able to pick up Cam today. The bad news is it took 45 minutes to drive the 6 miles to his school here in our lovely city of Oxnard. I blame all the red lights and the crazy drivers. But Cameron was very patient with me even though I was late -- and we then drove home. I viewed it as time well-spent with my son.
After school, the kids did their usual friend hang-out stuff! I worked on some laundry and mostly hung out with Molly and her friend, Amber. We baked chocolate chip cookies, which were a hit for snack!
Cameron had a better day and came home with no homework today -- so he was in a happier mood. And Bill was home by 6:15 and cooking a wonderful dinner of spaghetti, garlic bread, broccoli and salad. It was SO good! Thanks, honey:-)
Tonight I'm aiming to get to bed at a reasonable hour. Tomorrow I have an appointment with Dr. Cohen at 5 p.m. Hoping for a good treatment plan. Your prayers are much appreciated!
I'll let you know what I know when I know it...
Much Love,
Michele
Just time to say hello and touch base briefly as I promised Cam he could use the netbook before bedtime. And I'm currently sitting in the dark between Nate and Isaac's bed to encourage them to fall asleep quickly.
Today was a good day... after Bill and Cam left for work and school, I puttered around the house, did my Bible readings and prayers, and generally enjoyed the quiet time. By 9 a.m., my homeschoolers were up and joining me for breakfast. We did some schoolwork through the morning, and at noon Molly took the boys to the park while I took a bath. Since I have a PICC line and a Fentanyl patch, I get to bathe every 3 days when the patch gets changed. This is how I've learned to appreciate the little things in life, like a bath! Anyway, they had recess at the park, I got cleaned up, and we were all happy!
Also, I have been having a great time on FaceBook. I've reconnected with friends and family, and now I've even reconnected with my former principal and colleagues from WAY BACK WHEN in Pensacola, FL when I worked at St John's as a first grade teacher. And now I've connected with a bunch of my former 1st grade students who are now in their 20's. Talk about a pleasant blast from the past!
Anyway -- after lunch, recess, and my all-important bath, we worked on schoolwork and finished up by 3 p.m. At that point, I went to pick up Cameron from high school. I've been able to cut down on Dilaudid and that means I am sometimes safe to drive. So, the good news was -- I was able to pick up Cam today. The bad news is it took 45 minutes to drive the 6 miles to his school here in our lovely city of Oxnard. I blame all the red lights and the crazy drivers. But Cameron was very patient with me even though I was late -- and we then drove home. I viewed it as time well-spent with my son.
After school, the kids did their usual friend hang-out stuff! I worked on some laundry and mostly hung out with Molly and her friend, Amber. We baked chocolate chip cookies, which were a hit for snack!
Cameron had a better day and came home with no homework today -- so he was in a happier mood. And Bill was home by 6:15 and cooking a wonderful dinner of spaghetti, garlic bread, broccoli and salad. It was SO good! Thanks, honey:-)
Tonight I'm aiming to get to bed at a reasonable hour. Tomorrow I have an appointment with Dr. Cohen at 5 p.m. Hoping for a good treatment plan. Your prayers are much appreciated!
I'll let you know what I know when I know it...
Much Love,
Michele
Monday, February 22, 2010
THE BOYS PHONES CAME TODAY!!!
Hi Friends,
Well, after my earlier blog, we left to pick up our freebies in Ventura. And on the way out the door, we ran into the Fed Ex man with Nate and Isaac's new phones. They were absolutely thrilled. We don't have a land line anymore -- just cell phones, and it was time for Nate to get his phone. He is spending a lot of time with friends at the park, etc. and also is old enough to stay home alone. And as far as Isaac goes -- yes, I know 7 is a bit young to have a phone, but it gives me peace to know that the next time I'm in the hospital, I can contact each child and they can contact me whenever they want or need me.
We got some good stuff on the Freecycle run -- clothes, shoes, lotions, toys, etc. We came home and sorted through it all. Then we had lunch and finished up our homeschooling. Bill brought Cameron home from high school and activated the boys' phones. I helped Cam with some of his homework as he had more than usual -- due to make-up work caused by going on the Marine Biology field trip to Channel Islands on Friday.
Bill worked later than usual, but as a special treat -- my friend, Annie, showed up all the way from Simi Valley with Big Gulps and donuts in hand. She knows the way to my heart:-) And the kids love her, too! We just did instant food for dinner and the evening passed quickly as everyone's phone needed to be reprogrammed. If you need a list of the new phone numbers, please e-mail me at blandmm@msn.com. I don't want to list them in this blog as it's public domain.
Annie went home and the kids were all in bed by 10 p.m. Bill is still watching the Olympics, and we should probably go to bed soon! I'll try not to forget tomorrow and blog...
Much Love,
Michele
Well, after my earlier blog, we left to pick up our freebies in Ventura. And on the way out the door, we ran into the Fed Ex man with Nate and Isaac's new phones. They were absolutely thrilled. We don't have a land line anymore -- just cell phones, and it was time for Nate to get his phone. He is spending a lot of time with friends at the park, etc. and also is old enough to stay home alone. And as far as Isaac goes -- yes, I know 7 is a bit young to have a phone, but it gives me peace to know that the next time I'm in the hospital, I can contact each child and they can contact me whenever they want or need me.
We got some good stuff on the Freecycle run -- clothes, shoes, lotions, toys, etc. We came home and sorted through it all. Then we had lunch and finished up our homeschooling. Bill brought Cameron home from high school and activated the boys' phones. I helped Cam with some of his homework as he had more than usual -- due to make-up work caused by going on the Marine Biology field trip to Channel Islands on Friday.
Bill worked later than usual, but as a special treat -- my friend, Annie, showed up all the way from Simi Valley with Big Gulps and donuts in hand. She knows the way to my heart:-) And the kids love her, too! We just did instant food for dinner and the evening passed quickly as everyone's phone needed to be reprogrammed. If you need a list of the new phone numbers, please e-mail me at blandmm@msn.com. I don't want to list them in this blog as it's public domain.
Annie went home and the kids were all in bed by 10 p.m. Bill is still watching the Olympics, and we should probably go to bed soon! I'll try not to forget tomorrow and blog...
Much Love,
Michele
OOPS... I FORGOT SUNDAY:-)
Hi Friends,
I got up this morning and realized that I had forgotten to blog yesterday. So, I'll try blogging a bit earlier today before I get swallowed up into homeschooling and then tired out by the evening.
Yesterday we went to church, and we are feeling very welcome at our new church in Camarillo. It's called Gold Coast Christian Church. Nate, Molly, and Cameron went to the junior/senior high class, which is offered during the 10:45 service. They're making new friends and enjoying the lessons about God. They all have Ping Pong tables and fuzzball, so Nate thinks it's the coolest place ever! And in other big news, Isaac went to Sunday School (the first grade class) at that church for the first time. Since I've been sick, he's very attached to me and even at our old church -- he preferred to go into church with me and Bill rather than go to Sunday School. But after seeing how much fun the older kids had in their classes at GCCC, he decided to try it out for himself. He had a great time, made some first grade friends, and we were all very proud of him. He plans to go every week from now on. The message series right now for us big kids (grown-ups!) is on "Fireproofing your Marriage," so that was great for Bill and I to listen to. I am glad we've found a church nearby that meets our needs and that I can be excited about going to every Sunday:-)
After church, we came home and had lunch. The kids and I made chocolate chip cookies. See Facebook for pictures. And then, Bill and I took our usual Sunday nap. The weather was a bit cold and windy yesterday -- so after the nap we all stayed inside and just hung out. I made our usual "breakfast for dinner" last night. We had french toast and it was very tasty, if I do say so myself. After dinner, we played some board games and some games on the Wii for Family Game Night.
And we made plans for Cameron's birthday, which is this Thursday. Can you believe he's turning 17? I don't feel old enough to have a 17 year old! He wants to go out to eat for burgers on his birthday, and we're planning a trip to the zoo for his birthday celebration. We put it on the calendar for March 13th, because that seems to be our next available weekend date as a family. He is requesting his usual chocolate chip cookie cake, so the homeschoolers and I will make that and decorate the house for his birthday on Thursday.
Today I got up when Bill and Cameron did at 6:30. I spent some quiet time with God, praying and doing my Bible readings. Then I did some laundry and household chores while waiting for the other kids to get up. They started joining me by 9 a.m. for breakfast, chores, and homeschooling. Right now, we're going to take a break and head over to Ventura. A lady from Freecycle has a bunch of hand-me-downs for us. Then when we get back, we'll finish schooling and have lunch. I want to take our drive now, because I haven't had pain meds since 3 a.m. And later in the day, I will probably need them and no longer be able to drive.
I'll try and blog later and let you know what kind of goodies we scored thanks to Freecycle:-)
Much Love,
Michele
I got up this morning and realized that I had forgotten to blog yesterday. So, I'll try blogging a bit earlier today before I get swallowed up into homeschooling and then tired out by the evening.
Yesterday we went to church, and we are feeling very welcome at our new church in Camarillo. It's called Gold Coast Christian Church. Nate, Molly, and Cameron went to the junior/senior high class, which is offered during the 10:45 service. They're making new friends and enjoying the lessons about God. They all have Ping Pong tables and fuzzball, so Nate thinks it's the coolest place ever! And in other big news, Isaac went to Sunday School (the first grade class) at that church for the first time. Since I've been sick, he's very attached to me and even at our old church -- he preferred to go into church with me and Bill rather than go to Sunday School. But after seeing how much fun the older kids had in their classes at GCCC, he decided to try it out for himself. He had a great time, made some first grade friends, and we were all very proud of him. He plans to go every week from now on. The message series right now for us big kids (grown-ups!) is on "Fireproofing your Marriage," so that was great for Bill and I to listen to. I am glad we've found a church nearby that meets our needs and that I can be excited about going to every Sunday:-)
After church, we came home and had lunch. The kids and I made chocolate chip cookies. See Facebook for pictures. And then, Bill and I took our usual Sunday nap. The weather was a bit cold and windy yesterday -- so after the nap we all stayed inside and just hung out. I made our usual "breakfast for dinner" last night. We had french toast and it was very tasty, if I do say so myself. After dinner, we played some board games and some games on the Wii for Family Game Night.
And we made plans for Cameron's birthday, which is this Thursday. Can you believe he's turning 17? I don't feel old enough to have a 17 year old! He wants to go out to eat for burgers on his birthday, and we're planning a trip to the zoo for his birthday celebration. We put it on the calendar for March 13th, because that seems to be our next available weekend date as a family. He is requesting his usual chocolate chip cookie cake, so the homeschoolers and I will make that and decorate the house for his birthday on Thursday.
Today I got up when Bill and Cameron did at 6:30. I spent some quiet time with God, praying and doing my Bible readings. Then I did some laundry and household chores while waiting for the other kids to get up. They started joining me by 9 a.m. for breakfast, chores, and homeschooling. Right now, we're going to take a break and head over to Ventura. A lady from Freecycle has a bunch of hand-me-downs for us. Then when we get back, we'll finish schooling and have lunch. I want to take our drive now, because I haven't had pain meds since 3 a.m. And later in the day, I will probably need them and no longer be able to drive.
I'll try and blog later and let you know what kind of goodies we scored thanks to Freecycle:-)
Much Love,
Michele
Sunday, February 21, 2010
LATE NIGHT SATURDAY!!!
Hi Friends,
Well, I guess it's technically Sunday, BUT that's too confusing. Last night Bill took on as his personal mission to help me get some sleep. He stayed up watching TV, and he said every few hours I woke up, startled, and would get up in an Ambien fog and start doing things. But apparently I was easily redirected when he kept tucking me back into bed. He's going to talk to my doctor about it on Wednesday. My husband really is too sweet, and I did feel better after getting some sleep last night. Steroids are just too much for the Ambien to cover up, though!
We slept in until about 10 a.m. I then got up with the kids as Matthew was coming over. I did miscellaneous stuff around the house and the day seemed to go by really quickly. My head was killing me, because I took off my Fentanyl patch last night and didn't put a new one on. But, I wanted to take a bath before doing so, and I was really wiped out last night. I won't make that mistake again, because by the time I took my bath today and got a new patch on -- the pain was unbearable. I'll either suck it up next time and take the bath or live without a bath for another 3 days. That second-to-last time in the hospital, I had so many tubes that I couldn't shower/bathe for 26 days -- it sucks, but so does the pain!
Anyway, it's taking a while to get pain relief again today. I definitely couldn't drive myself anywhere today -- so Bill dropped me and Molly off at the library while he went grocery shopping. The 3 boys stayed home. I love the Oxnard Library and have been going there every Saturday to get books and DVDs to use with our home-schooling curriculum.
After the library, Bill dropped us off at home and went back out to finish his shopping. We unpacked the first load of groceries and the kids all took baths/showers in preparation for church tomorrow. When Bill arrived home, we unpacked some more groceries and he made soup and BLTs for dinner. It was a late dinner and all the kids are safely snuggled away in bed. Bill and I will follow soon.
I'm looking forward to church tomorrow. I wanted to share one part of my devotional today -- It's Psalm 23 : "The Divine Shepherd." I know we've all heard it many times before, but it really spoke to me today. I put in CAPS the words I thought were most important.
More tomorrow...
Much Love,
Michele
Psalm 23:
The Lord is my shepherd, I shall not want.
He MAKES me lie down in green pastures;
He LEADS me beside STILL waters;
He RESTORES my soul.
He leads me in right paths for his name's sake.
Even though I walk through the DARKEST valley,
I fear no evil;
FOR YOU ARE WITH ME;
your rod and staff--
they COMFORT me.
You PREPARE a table before me in the presence
of my enemies;
You annoint my head with oil;
MY CUP OVERFLOWS.
Surely, GOODNESS and MERCY shall FOLLOW me
ALL THE DAYS OF MY LIFE,
AND I SHALL DWELL IN THE HOUSE OF THE LORD
MY WHOLE LIFE LONG.
__ My goal is to memorize this within the next week:-)
Well, I guess it's technically Sunday, BUT that's too confusing. Last night Bill took on as his personal mission to help me get some sleep. He stayed up watching TV, and he said every few hours I woke up, startled, and would get up in an Ambien fog and start doing things. But apparently I was easily redirected when he kept tucking me back into bed. He's going to talk to my doctor about it on Wednesday. My husband really is too sweet, and I did feel better after getting some sleep last night. Steroids are just too much for the Ambien to cover up, though!
We slept in until about 10 a.m. I then got up with the kids as Matthew was coming over. I did miscellaneous stuff around the house and the day seemed to go by really quickly. My head was killing me, because I took off my Fentanyl patch last night and didn't put a new one on. But, I wanted to take a bath before doing so, and I was really wiped out last night. I won't make that mistake again, because by the time I took my bath today and got a new patch on -- the pain was unbearable. I'll either suck it up next time and take the bath or live without a bath for another 3 days. That second-to-last time in the hospital, I had so many tubes that I couldn't shower/bathe for 26 days -- it sucks, but so does the pain!
Anyway, it's taking a while to get pain relief again today. I definitely couldn't drive myself anywhere today -- so Bill dropped me and Molly off at the library while he went grocery shopping. The 3 boys stayed home. I love the Oxnard Library and have been going there every Saturday to get books and DVDs to use with our home-schooling curriculum.
After the library, Bill dropped us off at home and went back out to finish his shopping. We unpacked the first load of groceries and the kids all took baths/showers in preparation for church tomorrow. When Bill arrived home, we unpacked some more groceries and he made soup and BLTs for dinner. It was a late dinner and all the kids are safely snuggled away in bed. Bill and I will follow soon.
I'm looking forward to church tomorrow. I wanted to share one part of my devotional today -- It's Psalm 23 : "The Divine Shepherd." I know we've all heard it many times before, but it really spoke to me today. I put in CAPS the words I thought were most important.
More tomorrow...
Much Love,
Michele
Psalm 23:
The Lord is my shepherd, I shall not want.
He MAKES me lie down in green pastures;
He LEADS me beside STILL waters;
He RESTORES my soul.
He leads me in right paths for his name's sake.
Even though I walk through the DARKEST valley,
I fear no evil;
FOR YOU ARE WITH ME;
your rod and staff--
they COMFORT me.
You PREPARE a table before me in the presence
of my enemies;
You annoint my head with oil;
MY CUP OVERFLOWS.
Surely, GOODNESS and MERCY shall FOLLOW me
ALL THE DAYS OF MY LIFE,
AND I SHALL DWELL IN THE HOUSE OF THE LORD
MY WHOLE LIFE LONG.
__ My goal is to memorize this within the next week:-)
Friday, February 19, 2010
I LOVE FRIDAYS :-)
Hi Friends,
I'm still not getting much sleep (last night, think 3 1/2 hours), but I do love Fridays. Today was Bill's day off and Cameron went on a really cool field trip to one of the Channel Islands. They took an 1 1/2 hour boat ride out there to a national preserve and saw all sorts of marine life for his Marine Biology class. The housecleaners came this morning and so, we had an early start on home-schooling, too. We were done with schooling by 2 p.m., at which point Nate and Isaac decided to take showers. My children were taught and tidy by 2:30 p.m., and I was loving it! Nate and Isaac have recently found the joy in showering together in the huge master bathroom stand-up/sit-down shower. They wear swimsuits, don't worry, and it's very cute!
This afternoon, I did some reading. And I spent some time with the kids just hanging out. And I touched base with new and old friends on FaceBook. Molly's Grandma Linda sent her a TON of jewelry in the mail today. She's sorting through her personal items in preparation for their move to Arizona. It really made Molly's day! Thanks, Mom. Molly spent hours rearranging all of her new jewelry into drawers and she has many plans for what to wear each item with. It was sweet of you to think of her.
Bill picked up Cameron from school at 5 p.m. due to his field trip. It seemed weird not to have him home at 3:30. When he got home, he was really fired up about the whole experience. He wants to work with animals for his career, so this trip was perfect for him! We talked for at least 2 hours about every little detail and animal he saw/learned about.
We ate dinner and then Bill and the kids watched a movie. We also ordered cell phones for Nate and Isaac tonight. They should come this week, and the two little boys are beside themselves with excitement. They are making lots of friends here in our new neighborhood, and we want them to be reachable at all times. I also like the idea of everyone having their own phone to text/call me when I'm in the hospital again! We have not had landlines at home for the past few years, opting for cell phones instead.
Right now, everyone is asleep except me, Bill, and Molly. Molly is waiting for me to leave the computer and go to bed as she wants to go on FB to thank Grandma Linda herself for the jewelry. I am hoping AGAIN for a good night's sleep tonight. I had to laugh because when I did my Bible reading for today -- one part of it was Psalm 22: "Plea for Deliverance from Suffering..."
I won't quote the whole thing -- just Psalm 22:1-5, which I thought fit my situation.
"My God, my God, why have you forsaken me?
Why are you so far from helping me, from the words of my groaning?
O my God, I cry by day, but you do not answer;
AND BY NIGHT, BUT FIND NO REST.
Yet you are holy, enthroned on the praises of Israel.
In you our ancestors trusted;
they trusted, and you delivered them.
To you they cried, and were saved;
in you they trusted, and were not put to shame."
So, I will remember that my God is holy. I can trust Him, cry out to Him, and He will save and deliver me. In fact, I hope to find rest tonight!
More tomorrow... It's our library day... I love the Oxnard Library!
Much Love,
Michele
I'm still not getting much sleep (last night, think 3 1/2 hours), but I do love Fridays. Today was Bill's day off and Cameron went on a really cool field trip to one of the Channel Islands. They took an 1 1/2 hour boat ride out there to a national preserve and saw all sorts of marine life for his Marine Biology class. The housecleaners came this morning and so, we had an early start on home-schooling, too. We were done with schooling by 2 p.m., at which point Nate and Isaac decided to take showers. My children were taught and tidy by 2:30 p.m., and I was loving it! Nate and Isaac have recently found the joy in showering together in the huge master bathroom stand-up/sit-down shower. They wear swimsuits, don't worry, and it's very cute!
This afternoon, I did some reading. And I spent some time with the kids just hanging out. And I touched base with new and old friends on FaceBook. Molly's Grandma Linda sent her a TON of jewelry in the mail today. She's sorting through her personal items in preparation for their move to Arizona. It really made Molly's day! Thanks, Mom. Molly spent hours rearranging all of her new jewelry into drawers and she has many plans for what to wear each item with. It was sweet of you to think of her.
Bill picked up Cameron from school at 5 p.m. due to his field trip. It seemed weird not to have him home at 3:30. When he got home, he was really fired up about the whole experience. He wants to work with animals for his career, so this trip was perfect for him! We talked for at least 2 hours about every little detail and animal he saw/learned about.
We ate dinner and then Bill and the kids watched a movie. We also ordered cell phones for Nate and Isaac tonight. They should come this week, and the two little boys are beside themselves with excitement. They are making lots of friends here in our new neighborhood, and we want them to be reachable at all times. I also like the idea of everyone having their own phone to text/call me when I'm in the hospital again! We have not had landlines at home for the past few years, opting for cell phones instead.
Right now, everyone is asleep except me, Bill, and Molly. Molly is waiting for me to leave the computer and go to bed as she wants to go on FB to thank Grandma Linda herself for the jewelry. I am hoping AGAIN for a good night's sleep tonight. I had to laugh because when I did my Bible reading for today -- one part of it was Psalm 22: "Plea for Deliverance from Suffering..."
I won't quote the whole thing -- just Psalm 22:1-5, which I thought fit my situation.
"My God, my God, why have you forsaken me?
Why are you so far from helping me, from the words of my groaning?
O my God, I cry by day, but you do not answer;
AND BY NIGHT, BUT FIND NO REST.
Yet you are holy, enthroned on the praises of Israel.
In you our ancestors trusted;
they trusted, and you delivered them.
To you they cried, and were saved;
in you they trusted, and were not put to shame."
So, I will remember that my God is holy. I can trust Him, cry out to Him, and He will save and deliver me. In fact, I hope to find rest tonight!
More tomorrow... It's our library day... I love the Oxnard Library!
Much Love,
Michele
Thursday, February 18, 2010
A DAY AT THE BEACH!!!
Hi Friends,
Well, after the last two nights, in which I got a total of 4 hours of sleep -- I'm hoping tonight will be my night to get a full night's sleep! Recently the steroids just make me so hyper and my head is so achey!
So, today after Cam and Bill left, I stayed up and did some things around the house while waiting for my home nurse to show up. I worked on laundry and some general tidying and organizing, as well as calling numerous doctors for appointments. My substitute nurse ( my real one is away on vacation) arrived at about 9 a.m.. She was nice, but worked very slow, and it took her almost an hour to change out my PICC line dressing and draw blood. After she left, the kids and I did schoolwork and did their chores. That took until about 2 p.m. At that point, we took a drive to the beach stopping at Burger King for lunch on the way.
We drove down the PCH and stopped at the big sanddunes for a big sandy hike. It was challenging, but fun! We then drove over to the beach and hung out in the water/sand for an hour. We made sandcastles, played in the waves, saw a sea lion and other birds and interesting wildlife, and we collected pretty rocks and seashells. It was cloudy and 60 degrees -- perfect lupus weather as I'm not allowed to see the sun. Even with my high SPF and the clouds, I'm still very sunburned -- but it was so worth it! We had a great time! It's so nice to be 15 minutes away from the beach. We can go whenever we want to!
Bill picked up Cameron from school and he beat us home. We arrived home at about 4:30, and the kids all took showers or baths to remove their sand. It's so nice to have 3 bathrooms. I had Molly and Nate each in a shower, and Isaac in a bath all at the same time.
We spent the rest of the night eating pizza and watching Olympic figure skating! Cameron is excited because he has a Marine Biology field trip tomorrow! And I'm excited because tomorrow is Bill's day off. YEAH!!!
I'll blog more tomorrow. And I have a bunch of photos from our beach day to blog here and put on FaceBook.
Much Love,
Michele
Well, after the last two nights, in which I got a total of 4 hours of sleep -- I'm hoping tonight will be my night to get a full night's sleep! Recently the steroids just make me so hyper and my head is so achey!
So, today after Cam and Bill left, I stayed up and did some things around the house while waiting for my home nurse to show up. I worked on laundry and some general tidying and organizing, as well as calling numerous doctors for appointments. My substitute nurse ( my real one is away on vacation) arrived at about 9 a.m.. She was nice, but worked very slow, and it took her almost an hour to change out my PICC line dressing and draw blood. After she left, the kids and I did schoolwork and did their chores. That took until about 2 p.m. At that point, we took a drive to the beach stopping at Burger King for lunch on the way.
We drove down the PCH and stopped at the big sanddunes for a big sandy hike. It was challenging, but fun! We then drove over to the beach and hung out in the water/sand for an hour. We made sandcastles, played in the waves, saw a sea lion and other birds and interesting wildlife, and we collected pretty rocks and seashells. It was cloudy and 60 degrees -- perfect lupus weather as I'm not allowed to see the sun. Even with my high SPF and the clouds, I'm still very sunburned -- but it was so worth it! We had a great time! It's so nice to be 15 minutes away from the beach. We can go whenever we want to!
Bill picked up Cameron from school and he beat us home. We arrived home at about 4:30, and the kids all took showers or baths to remove their sand. It's so nice to have 3 bathrooms. I had Molly and Nate each in a shower, and Isaac in a bath all at the same time.
We spent the rest of the night eating pizza and watching Olympic figure skating! Cameron is excited because he has a Marine Biology field trip tomorrow! And I'm excited because tomorrow is Bill's day off. YEAH!!!
I'll blog more tomorrow. And I have a bunch of photos from our beach day to blog here and put on FaceBook.
Much Love,
Michele
Wednesday, February 17, 2010
WEDNESDAY!!!
Hi Friends,
I'm hoping to blog and then get a full night's sleep -- unlike what I did last night. Last night I could not fall asleep due partly to my pounding headache, and partly to my steroids giving me too much energy at weird times (like in the middle of the night). So, I slept from 5 a.m.-7:30 a.m. when I got up with Cam and Bill to send them off to school and work. Wednesday is actually Cameron's late day (he starts school at 9 a.m., rather than 8 a.m.) -- but unfortunately every Wednesday Bill ends up with an early morning meeting. Since I can't drive much on the pain meds, we had to come up with an alternative plan for Wednesdays. Luckily there is a Spudnuts (donut shop) across the street from Cam's high school. So, it was decided he could stop there each Wednesday morning and buy a donut and a drink before walking over to school. I don't have to drive, Bill is on time for his meeting, and Cameron gets to eat junky food for breakfast. We've all decided it's a win-win-win situation for all of us!!!
Cameron was supposed to be going on a Marine Biology field trip this Friday, but so far not enough kids have signed up -- so it may have to be cancelled. He'll find out tomorrow. I hope he gets to go, because it sounded like a really fun one -- watching sea life in the Channel Islands. But the fee was $45 per student, so I'm not that surprised there wasn't a big sign up. It was a stretch for us, too -- but we really wanted him to go!
After Bill and Cam left at 8 a.m., I decided to get up and do some chores around the house. I also ate my breakfast, checked FaceBook, and did my daily Bible readings for today. That seemed to take several hours, and by the time I finished it was 10 a.m. and my homeschoolers were arriving downstairs one by one. We made scrambled eggs and toast for breakfast, did our chores, and started in on our schoolwork.
Before I knew it -- they were again hungry, but for lunch and we had mac and cheese and tomato soup. We did the rest of our schoolwork -- math, reading, journaling, Bible, art (cartooning), and a science DVD on gravity. After doing our PE on the Wii Fit, Cam and Bill came home. And soon Amber and Matthew were collecting my other kids to go to the park.
The kids only played from 4-5:30 because tonight they wanted to go to our new church for Youth group. Bill took Molly and Nate, and they had a great time. Youth group is for grades 6-12 on Wednesday nights, but we didn't force Cameron to go. He belongs to a Bible club at his school, anyway. The middle kids had fun at church, Bill went grocery shopping, Cam and I worked on his FaceBook account, and Isaac watched Fat Albert ("HEY, HEY, HEY!!!). Everyone met up again around 9 p.m. and we starting getting kids ready for bed. And as usual, it's quiet in the house -- I'm the only one up. I am going to try to go to bed soon, as the home health nurse is coming tomorrow morning at 8:30 to draw blood and change my PICC line dressing. Fun, Fun!
Other than that -- I have the urge to take the kids to the beach tomorrow or Friday if the weather continues to be so nice:-) So, I'll check the weather and make a plan for that. Cameron's birthday is coming up on the 25th and he'd like to go to the zoo for that. So, I need to start planning for that, too.
More tomorrow...
Much Love,
Michele
P.S. Molly and Amber made a friend at the park today. He's 16 and his Mom has "kicked him out of their house." He came to talk to me, because he doesn't have anywhere to go. I tried to talk him into going back to seeing his Mom and making nice, but he was not interested -- was adamant he couldn't go home and even gave me her phone number. Bill wasn't home, so I sent Cody over to talk with Matthew and Amber's grandparents about the situation. I guess he ate dinner there and then said he'd go home. But they still didn't have a good feeling. So, I may need to follow up tomorrow, and I hope I won't need to call CPS. But come on -- he's 16, she can't throw him out without at least putting him with a relative or in foster care. That family could really use your prayers. My kids were really upset after hearing about the situation as well. They couldn't believe a Mom wouldn't want her child in the home with her. It was hard to explain, escpecially considering that we only had half of the story!
I'm hoping to blog and then get a full night's sleep -- unlike what I did last night. Last night I could not fall asleep due partly to my pounding headache, and partly to my steroids giving me too much energy at weird times (like in the middle of the night). So, I slept from 5 a.m.-7:30 a.m. when I got up with Cam and Bill to send them off to school and work. Wednesday is actually Cameron's late day (he starts school at 9 a.m., rather than 8 a.m.) -- but unfortunately every Wednesday Bill ends up with an early morning meeting. Since I can't drive much on the pain meds, we had to come up with an alternative plan for Wednesdays. Luckily there is a Spudnuts (donut shop) across the street from Cam's high school. So, it was decided he could stop there each Wednesday morning and buy a donut and a drink before walking over to school. I don't have to drive, Bill is on time for his meeting, and Cameron gets to eat junky food for breakfast. We've all decided it's a win-win-win situation for all of us!!!
Cameron was supposed to be going on a Marine Biology field trip this Friday, but so far not enough kids have signed up -- so it may have to be cancelled. He'll find out tomorrow. I hope he gets to go, because it sounded like a really fun one -- watching sea life in the Channel Islands. But the fee was $45 per student, so I'm not that surprised there wasn't a big sign up. It was a stretch for us, too -- but we really wanted him to go!
After Bill and Cam left at 8 a.m., I decided to get up and do some chores around the house. I also ate my breakfast, checked FaceBook, and did my daily Bible readings for today. That seemed to take several hours, and by the time I finished it was 10 a.m. and my homeschoolers were arriving downstairs one by one. We made scrambled eggs and toast for breakfast, did our chores, and started in on our schoolwork.
Before I knew it -- they were again hungry, but for lunch and we had mac and cheese and tomato soup. We did the rest of our schoolwork -- math, reading, journaling, Bible, art (cartooning), and a science DVD on gravity. After doing our PE on the Wii Fit, Cam and Bill came home. And soon Amber and Matthew were collecting my other kids to go to the park.
The kids only played from 4-5:30 because tonight they wanted to go to our new church for Youth group. Bill took Molly and Nate, and they had a great time. Youth group is for grades 6-12 on Wednesday nights, but we didn't force Cameron to go. He belongs to a Bible club at his school, anyway. The middle kids had fun at church, Bill went grocery shopping, Cam and I worked on his FaceBook account, and Isaac watched Fat Albert ("HEY, HEY, HEY!!!). Everyone met up again around 9 p.m. and we starting getting kids ready for bed. And as usual, it's quiet in the house -- I'm the only one up. I am going to try to go to bed soon, as the home health nurse is coming tomorrow morning at 8:30 to draw blood and change my PICC line dressing. Fun, Fun!
Other than that -- I have the urge to take the kids to the beach tomorrow or Friday if the weather continues to be so nice:-) So, I'll check the weather and make a plan for that. Cameron's birthday is coming up on the 25th and he'd like to go to the zoo for that. So, I need to start planning for that, too.
More tomorrow...
Much Love,
Michele
P.S. Molly and Amber made a friend at the park today. He's 16 and his Mom has "kicked him out of their house." He came to talk to me, because he doesn't have anywhere to go. I tried to talk him into going back to seeing his Mom and making nice, but he was not interested -- was adamant he couldn't go home and even gave me her phone number. Bill wasn't home, so I sent Cody over to talk with Matthew and Amber's grandparents about the situation. I guess he ate dinner there and then said he'd go home. But they still didn't have a good feeling. So, I may need to follow up tomorrow, and I hope I won't need to call CPS. But come on -- he's 16, she can't throw him out without at least putting him with a relative or in foster care. That family could really use your prayers. My kids were really upset after hearing about the situation as well. They couldn't believe a Mom wouldn't want her child in the home with her. It was hard to explain, escpecially considering that we only had half of the story!
FIRST DAY BACK TO SCHOOL THIS WEEK :-)
Hi Friends,
I had a good day, although my head is still killing me. Can't sleep -- the steroids are still messing me up. It's too late (or early) to tell you much, but I wanted to post this poem. My kids read it in homeschool today and then wrote it out for their handwriting assignments.
If I Were...
(Author Unknown)
If you were busy being kind,
Before you knew it, you would find
You'd soon forget to think 'twas true
That someone was unkind to you.
If you were busy being glad,
And cheering people who are sad,
Although your heart might ache a bit,
You'd soon forget to notice it.
If you were busy being good,
And doing just the best you could,
You'd not have time to blame some man
Who's doing just the best he can.
If you were busy being right,
You'd find yourself too busy quite
To criticize your neighbor long
Because he's busy being wrong.
------------------------------------------------------
What a great lesson if you ask me. We need to focus on ourselves, rather than blaming others!
So, today Cam and Bill left early for school in order to turn in Cameron's huge display of the solar system. I giggled as they left, just thinking about the two of them carrying it into school. But apparently, it arrived without incident! Thank God! His geography teacher was very impressed and used it all day to teach her 6 periods of classes. So, we're hoping to get lots of extra credit points, and now all of my kids have bragging rights -- even Isaac feels this makes him "smarter than an 11th grader!"
The homeschoolers and I did our usual stuff from about 9 a.m.-3 p.m., finishing up all of our chores and schoolwork. I am a big fan of the Oxnard Library, and we have gotten some excellent teaching resources there. Today, we watched a DVD on Thomas Edison and also a DVD on Agriculture, teaching the kids how food "goes from the farm to the table." It was a big hit for our "city-fied" kids.
When Cam got home from school, the other kids were all leaving to play with friends. So, Cam and I had some time to hang out together. He had no homework tonight, so I helped him set up his own FaceBook account. We also finished setting up Molly's when she got home. They will only be allowed to use the accounts under my supervision, but I do think it will be a great way for them to keep in contact with far-away friends/relatives. So, feel free to "friend" them!
Bill got home at about 6:30, and he made a very tasty chicken stir-fry for dinner. The kids gobbled every bit of it up. After dinner it was baths/showers for everyone, more chores, and off to bed for everyone except me -- crazy steroid lady. I am going to try to go to sleep now, though. It would be nice to get a few hours of sleep before tomorow starts. Wish me luck!!
More tomorrow...
Much Love,
Michele
Tuesday, February 16, 2010
DAY AFTER VALENTINE'S DAY...
Hi Friends,
I am slowly recovering from our big Valentine's Day date yesterday. We slept in until almost noon today. I got up, because Isaac was requesting pizza. So, we made some frozen pizza for lunch. After that I did some reading and Bible study in my bed while the boys played with Matthew and Solomen. Cameron and Molly mostly hung out in front of the TV today.
This afternoon, I got moving and did some housework and chores with the kids. We just hung out for a while, and then we did some schoolwork. We watched a video on George Washington, did some reading and a Bible lesson. And then we watched Bill Nye the Science Guy. It was an astronomy DVD which we watched in preparation for doing a solar system model due in Cam's geography class for extra credit. We all helped him do his project, as I figured all of the home-schoolers could learn from it as well. It took us about 3 hours, but I think the final project turned out well. Now, if Bill and Cam can just get it into school tomorrow morning without demolishing it -- it's very BIG! I posted some pictures of our evening on FaceBook tonight.
After dinner (Bill made Mexican, and we made George Washington cupcakes) and finishing the project -- I put all the kids to bed. Now it's my turn.
More tomorrow...
Much Love,
Michele
I am slowly recovering from our big Valentine's Day date yesterday. We slept in until almost noon today. I got up, because Isaac was requesting pizza. So, we made some frozen pizza for lunch. After that I did some reading and Bible study in my bed while the boys played with Matthew and Solomen. Cameron and Molly mostly hung out in front of the TV today.
This afternoon, I got moving and did some housework and chores with the kids. We just hung out for a while, and then we did some schoolwork. We watched a video on George Washington, did some reading and a Bible lesson. And then we watched Bill Nye the Science Guy. It was an astronomy DVD which we watched in preparation for doing a solar system model due in Cam's geography class for extra credit. We all helped him do his project, as I figured all of the home-schoolers could learn from it as well. It took us about 3 hours, but I think the final project turned out well. Now, if Bill and Cam can just get it into school tomorrow morning without demolishing it -- it's very BIG! I posted some pictures of our evening on FaceBook tonight.
After dinner (Bill made Mexican, and we made George Washington cupcakes) and finishing the project -- I put all the kids to bed. Now it's my turn.
More tomorrow...
Much Love,
Michele
Sunday, February 14, 2010
HAPPY VALENTINE'S WEEKEND !!!
Song of Solomon 4:3, " When I found him whom my soul loves...I held him, and I would not let him go..."
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Hi Friends,
I've been busy on Facebook this weekend, and so I realized I never got around to blogging. I know that not everyone is comfortable with FB, but I posted a ton of photos on my FB page this weekend. So, you may just want to set up an account and "friend" me -- that way you can see all the pictures. It just is easier to do photo albums on FB. Putting photos on the blog is a bit more time-consuming! Or, if you really need me to -- I can always share pictures with you the old-fashioned way. If I remember how?
So, on Saturday, we got up in the morning and had breakfast, did chores, etc. Bill drove me and the homeschoolers over to the Oxnard Public Library. It's an absolutely, huge and beautiful space for the kids to check out books, DVDs and even computer games. And I'm finding so much in the way of teaching supplies! We spent a few hours there, and then we stopped at WalGreen's for meds on the way home.
Nate and Isaac played with Matthew after they got home, and Molly worked on curling her hair while I drove over to the 99 cents store on a search for Valentine's Day presents for the kids. I put together some cute heart goodie bags for the kids. When I got home, Molly was beautified and ready to put on a fashion show with all her "new" clothes she had bought from the ARC thrift store on Friday. We took pictures of her in all her new outfits and made a "Molly Bland:Fashion Diva" photo album for my Facebook page. Her friend, Amber, helped us, and we had a great time! Girls are so much fun!
Last night Bill made chili-cheese dogs and french fries. We watched the Olympics until the kids fell asleep.
This morning, we all set our alarms to 9 a.m., and got up to open our Valentine's presents and get ready for church. We once again went to Gold Coast Church in Camarillo and really enjoyed it. Today Pastor Scott started a new 6 part message series on "Fireproofing Your Marriage." This is of course -- a great lesson for Bill and me and all other married couples, I'm sure. Cam, Molly, and Nate all go to junior/senior high group together, and they really enjoyed it today. Isaac was still too shy to go to his first grade class --- but after seeing their fun, he decided that next week he'll try to go with the other kids his age.
After church, we came home. Cam and Molly fed the little boys lunch and babysat Isaac and Nate for us, so that Bill and I could go out on a Valentine's day We rented a double feature for the night -- "Cheaper by the Dozen," and "Cheaper by the Dozen2." They seemed to do well with the movies and entertaining themselves.
And Bill and I had a terrific and romantic Valentine's Date. We drove his Harley down the Pacific Coast Highway (beautiful view of the ocean!) and had a late lunch at Neptune's Net -- a famous restaurant near Malibu! We hung out at the beach and then we went for a hike in the Santa Monica Mountains. We took in the beauty of the California landscape and ocean and the beautiful sunset -- every brushstroke painted by my God.
We got home around 7 p.m. Bill thought I did really well on the motorcycle, and it was fun -- but it really tired me out. So, I took some pain meds and lay down in bed. Cam had some homework that he needed help with. So, I helped him with his Geography and English. Tomorrow he has one more day off, but we have an extra-credit planetary project to work on for his geography class. Since the homeschoolers are also studying the planets=, we'll all work on it together. Then Cam can turn it in and bring it back for all of us to share. That will be better than doing 4 separate planetary models! It should encourage teamwork and discourage clutter -- at least that's the plan
We also will be learning about George Washington tomorrow as it's his birthday. And with the rest of the day -- we plan to have fun! I'm sure Matthew and Amber will be texting/calling, etc. since they're off of school. And I promised Cam and Molly that tomorrow I will help them set up FaceBook pages to be used under my supervision.
It's almost 12:30 a.m. and I have two little boys falling asleep in my bed with me. Time to take them up to their bedrooms! Cam and Molly are already sleeping, and Bill is finishing up on the MAC for the night!
More tomorrow, I Hope :-)
Happy <3 Day:-)
Much Love,
Michele
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Hi Friends,
I've been busy on Facebook this weekend, and so I realized I never got around to blogging. I know that not everyone is comfortable with FB, but I posted a ton of photos on my FB page this weekend. So, you may just want to set up an account and "friend" me -- that way you can see all the pictures. It just is easier to do photo albums on FB. Putting photos on the blog is a bit more time-consuming! Or, if you really need me to -- I can always share pictures with you the old-fashioned way. If I remember how?
So, on Saturday, we got up in the morning and had breakfast, did chores, etc. Bill drove me and the homeschoolers over to the Oxnard Public Library. It's an absolutely, huge and beautiful space for the kids to check out books, DVDs and even computer games. And I'm finding so much in the way of teaching supplies! We spent a few hours there, and then we stopped at WalGreen's for meds on the way home.
Nate and Isaac played with Matthew after they got home, and Molly worked on curling her hair while I drove over to the 99 cents store on a search for Valentine's Day presents for the kids. I put together some cute heart goodie bags for the kids. When I got home, Molly was beautified and ready to put on a fashion show with all her "new" clothes she had bought from the ARC thrift store on Friday. We took pictures of her in all her new outfits and made a "Molly Bland:Fashion Diva" photo album for my Facebook page. Her friend, Amber, helped us, and we had a great time! Girls are so much fun!
Last night Bill made chili-cheese dogs and french fries. We watched the Olympics until the kids fell asleep.
This morning, we all set our alarms to 9 a.m., and got up to open our Valentine's presents and get ready for church. We once again went to Gold Coast Church in Camarillo and really enjoyed it. Today Pastor Scott started a new 6 part message series on "Fireproofing Your Marriage." This is of course -- a great lesson for Bill and me and all other married couples, I'm sure. Cam, Molly, and Nate all go to junior/senior high group together, and they really enjoyed it today. Isaac was still too shy to go to his first grade class --- but after seeing their fun, he decided that next week he'll try to go with the other kids his age.
After church, we came home. Cam and Molly fed the little boys lunch and babysat Isaac and Nate for us, so that Bill and I could go out on a Valentine's day We rented a double feature for the night -- "Cheaper by the Dozen," and "Cheaper by the Dozen2." They seemed to do well with the movies and entertaining themselves.
And Bill and I had a terrific and romantic Valentine's Date. We drove his Harley down the Pacific Coast Highway (beautiful view of the ocean!) and had a late lunch at Neptune's Net -- a famous restaurant near Malibu! We hung out at the beach and then we went for a hike in the Santa Monica Mountains. We took in the beauty of the California landscape and ocean and the beautiful sunset -- every brushstroke painted by my God.
We got home around 7 p.m. Bill thought I did really well on the motorcycle, and it was fun -- but it really tired me out. So, I took some pain meds and lay down in bed. Cam had some homework that he needed help with. So, I helped him with his Geography and English. Tomorrow he has one more day off, but we have an extra-credit planetary project to work on for his geography class. Since the homeschoolers are also studying the planets=, we'll all work on it together. Then Cam can turn it in and bring it back for all of us to share. That will be better than doing 4 separate planetary models! It should encourage teamwork and discourage clutter -- at least that's the plan
We also will be learning about George Washington tomorrow as it's his birthday. And with the rest of the day -- we plan to have fun! I'm sure Matthew and Amber will be texting/calling, etc. since they're off of school. And I promised Cam and Molly that tomorrow I will help them set up FaceBook pages to be used under my supervision.
It's almost 12:30 a.m. and I have two little boys falling asleep in my bed with me. Time to take them up to their bedrooms! Cam and Molly are already sleeping, and Bill is finishing up on the MAC for the night!
More tomorrow, I Hope :-)
Happy <3 Day:-)
Much Love,
Michele
Friday, February 12, 2010
WHERE IS A SHIP SAFE???
"A ship is safe in the harbor, but that is not what a ship is for." --Thomas Aquinas
Hi Friends,
I just like this quote. We can live our lives and worry about being safe or we can celebrate life with reckless abandon. I choose to fulfill my purpose in life, and that will not always mean I'm being safe.
Today was a good day -- another day given to me, another gift from God. Cameron had the day off of school today. He also has Monday off. They not only have Monday off for President's Day here, but they actually had today off for Lincoln's Birthday and Monday off for Washington's Birthday. So, he was happy to have a day off of school, and I was happy to have him home as my teaching assistant today. He's such a great kid:-)
We slept in until 9 a.m. today. That is -- all of us except Bill who had to be to work earlier for a meeting. The rest of us got up at nine and had breakfast and got dressed before our weekly housecleaners showed up at 9:30. We spent about 2 hours downstairs doing reading, math and Bible. Then we moved upstairs for the lessons Cameron was teaching today. He wanted to teach a film class, so he planned a lesson based on Kung Fu Panda. The kids watched it with him, and discussed finding their purpose in life. He had designed a worksheet and FBI-type secret mission project to do in conjunction with the movie. All the kids enjoyed it and having him as their teacher today. He also taught a PE lesson using the Wii Fit for running.
After lunch, I set the kids free for a while. Since Matthew was also off of school for the day, he was calling Nate and Isaac to come over and play. So, they did that. They played all afternoon with Matthew. Cameron took a break and watched TV. And Molly and I escaped for a little bit of "girl time!" She still had $40 saved up from her Christmas money, and for quite a while -- she had wanted to go thrift-store shopping with me. Well, today was her day -- I had made it all day without any pain medication, so I felt safe to drive this afternoon. We went and checked out the ARC Super Thrift Store here in Oxnard. It's huge and very nice. She did well with her money, and was able to buy 3 pairs of jeans, a pretty pink belt, and 5 new shirts. It was a nice time of girl bonding for us. I'm looking forward to going again when I have some money to spend on myself!!!
When we got home, Molly put on a fashion show for us. And then we decided to wash up all her clothes. Tomorrow we are planning to take her pictures in the new clothes and post it on my FaceBook account, so stay tuned. The boys and Matthew came over here to hang out for a while. And I took that delayed pain medication and a nap.
I talked with Shirlene on the telephone this afternoon. She and Brandon are planning to come and visit us here in Oxnard on Monday. So, that will be really nice!! Spent some time on FaceBook catching up with old friends, too.
At 6:30, I collected all the homeschoolers again and we finished up our last bits of schoolwork. We're reading a book on Abraham Lincoln, and we finished up our journals, and any other loose ends. Bill came home and made us fish sandwiches and french fries for dinner. We ate and started to watch the Olympic Opening Ceremonies. It's always so inspiring. The boys grew bored of it after a few hours, but Molly and I (and our snuggling kitties) are still watching. Bill is working on his website in what I call the "BigMac Zone" -- you'd have to see his new Mac to truly understand :-)
I'm getting tired, and I should probably head upstairs to take a bath. Between the PICC line and my Fentanyl patch (which gets changed every 3 days), I have a very regimented bathing routine. Basically -- I bathe every 3 days need it or not! In between, I use lots of deoderant and perfume and on a good note -- the less I wash my hair , the better it seems to do. If I wash it, I just lose more clumps!
Tomorrow we are going to the library. They have a Family Story Hour at 12:3o p.m. on Saturdays, and we have books that are due anyway. We are also hoping to make it to church this Sunday. So, we'll see how well we do on our goals.
Final plans have been made for our trip to Las Vegas in March. We'll be there from March 21st -March 27th. Bill has a convention for work, and he's bringing us all along. We'll be staying at the MGM Grande. So, if anyone's going to be in the Vegas area then, let us know. The kids are very excited about a vacation, and so am I! I don't get out much -- except for doctor's appointment and chemo, which tends not to be much fun!
More tomorrow...
Much Love,
Michele
P.S. -- For the last week, I've had a recurring, but pleasant dream where Bill buys me an orange convertible. I'm driving around in it with all the kids, and we're having a great time with the top down. Bill's never in the dream. I guess he must be at work to pay for the convertible. So, I asked him today if it's too late to put in an order for an orange convertible for Valentine's Day. Unfortunately, he says it is -- but we are planning a special date to Neptune's Net on Pacific Coast Highway for Valentine's Day. We're going to ride on his Harley, which has been a goal of mine for the last 2 years. Well, this year, he bought me the helmet and motorcycle gear -- so it will finally become a reality. And the kids are happy to see us off on a date! It's good to know your parents are still in love, I guess!
Hi Friends,
I just like this quote. We can live our lives and worry about being safe or we can celebrate life with reckless abandon. I choose to fulfill my purpose in life, and that will not always mean I'm being safe.
Today was a good day -- another day given to me, another gift from God. Cameron had the day off of school today. He also has Monday off. They not only have Monday off for President's Day here, but they actually had today off for Lincoln's Birthday and Monday off for Washington's Birthday. So, he was happy to have a day off of school, and I was happy to have him home as my teaching assistant today. He's such a great kid:-)
We slept in until 9 a.m. today. That is -- all of us except Bill who had to be to work earlier for a meeting. The rest of us got up at nine and had breakfast and got dressed before our weekly housecleaners showed up at 9:30. We spent about 2 hours downstairs doing reading, math and Bible. Then we moved upstairs for the lessons Cameron was teaching today. He wanted to teach a film class, so he planned a lesson based on Kung Fu Panda. The kids watched it with him, and discussed finding their purpose in life. He had designed a worksheet and FBI-type secret mission project to do in conjunction with the movie. All the kids enjoyed it and having him as their teacher today. He also taught a PE lesson using the Wii Fit for running.
After lunch, I set the kids free for a while. Since Matthew was also off of school for the day, he was calling Nate and Isaac to come over and play. So, they did that. They played all afternoon with Matthew. Cameron took a break and watched TV. And Molly and I escaped for a little bit of "girl time!" She still had $40 saved up from her Christmas money, and for quite a while -- she had wanted to go thrift-store shopping with me. Well, today was her day -- I had made it all day without any pain medication, so I felt safe to drive this afternoon. We went and checked out the ARC Super Thrift Store here in Oxnard. It's huge and very nice. She did well with her money, and was able to buy 3 pairs of jeans, a pretty pink belt, and 5 new shirts. It was a nice time of girl bonding for us. I'm looking forward to going again when I have some money to spend on myself!!!
When we got home, Molly put on a fashion show for us. And then we decided to wash up all her clothes. Tomorrow we are planning to take her pictures in the new clothes and post it on my FaceBook account, so stay tuned. The boys and Matthew came over here to hang out for a while. And I took that delayed pain medication and a nap.
I talked with Shirlene on the telephone this afternoon. She and Brandon are planning to come and visit us here in Oxnard on Monday. So, that will be really nice!! Spent some time on FaceBook catching up with old friends, too.
At 6:30, I collected all the homeschoolers again and we finished up our last bits of schoolwork. We're reading a book on Abraham Lincoln, and we finished up our journals, and any other loose ends. Bill came home and made us fish sandwiches and french fries for dinner. We ate and started to watch the Olympic Opening Ceremonies. It's always so inspiring. The boys grew bored of it after a few hours, but Molly and I (and our snuggling kitties) are still watching. Bill is working on his website in what I call the "BigMac Zone" -- you'd have to see his new Mac to truly understand :-)
I'm getting tired, and I should probably head upstairs to take a bath. Between the PICC line and my Fentanyl patch (which gets changed every 3 days), I have a very regimented bathing routine. Basically -- I bathe every 3 days need it or not! In between, I use lots of deoderant and perfume and on a good note -- the less I wash my hair , the better it seems to do. If I wash it, I just lose more clumps!
Tomorrow we are going to the library. They have a Family Story Hour at 12:3o p.m. on Saturdays, and we have books that are due anyway. We are also hoping to make it to church this Sunday. So, we'll see how well we do on our goals.
Final plans have been made for our trip to Las Vegas in March. We'll be there from March 21st -March 27th. Bill has a convention for work, and he's bringing us all along. We'll be staying at the MGM Grande. So, if anyone's going to be in the Vegas area then, let us know. The kids are very excited about a vacation, and so am I! I don't get out much -- except for doctor's appointment and chemo, which tends not to be much fun!
More tomorrow...
Much Love,
Michele
P.S. -- For the last week, I've had a recurring, but pleasant dream where Bill buys me an orange convertible. I'm driving around in it with all the kids, and we're having a great time with the top down. Bill's never in the dream. I guess he must be at work to pay for the convertible. So, I asked him today if it's too late to put in an order for an orange convertible for Valentine's Day. Unfortunately, he says it is -- but we are planning a special date to Neptune's Net on Pacific Coast Highway for Valentine's Day. We're going to ride on his Harley, which has been a goal of mine for the last 2 years. Well, this year, he bought me the helmet and motorcycle gear -- so it will finally become a reality. And the kids are happy to see us off on a date! It's good to know your parents are still in love, I guess!
"NO ONE CRIES THE WRONG WAY..."
Hi Friends,
Annie gave me a new devotional to read. It's called "No one cries the wrong way!" Sadness is not wrong, it's just important that we can see God through our tears! I've been back to doing a lot of reading again, and I'm really enjoying it.
This morning, I noticed a big improvement in my pain level. Using the Fentanyl patch all the time is really helping my long-term pain, and it's enabling me to take the Dilaudid less, which is good. I also got to go from 60 mg. of Prednisone to 30 mg of Prednisone daily, so that made me feel much less moody, emotional, and wired!
After Bill and Cam left for school and work and 7:15, I lounged around in bed until the homeschoolers woke up at around 9 a.m. We spent the day doing out usual stuff, re: schoolwork, chores, etc. We were done by 3 p.m. at which point the kids had free time, and I lay down for a 3 hour nap. It was quite lovely. I woke up to Isaac bringing in flowers that he had picked for me. After that, I saw Cameron working on lesson plans for tomorrow. He has the day off of school and has offered to help me teach the homeshoolers. So, he is planning to teach a a film class and PE class, and I will do Bible, math, reading, and social studies. I'm looking forward to the help. And we also have the cleaners coming tomorrow, so it will be nice to have our Friday house tidy again! I do love Fridays!!!
Bill came home at 6 p.m., and he made a tasty pasta dish for dinner. It was great, and most of the kids ate it while watching Star Trek with Bill. We finished that up, and the kids took baths/showers before bed. We also tidied up the kids' bedrooms, so that the cleaners have a path into the rooms.
I made a few phone calls tonight to friends to let them know what's going on with my health. I haven't heard anything from Dr. Cohen today, so I'm just hanging in here. Hopefully, he's having some luck making appointments at UCLA for me. We'll soon see!
It's very late, and I have to be up by 9 a.m. tomorrow to let the cleaners in. We'll start homeschooling, too, when they get here. They do the upstairs first while we stay downstairs, and then we move upstairs while they clean downstairs. It works out quite well. But for now...I'm nodding off and I don't want to drop Isaac's netbook, so I'll sign off.
Good Night,
Much Love,
Michele
P.S. Happy Birthday Allan!!!
Annie gave me a new devotional to read. It's called "No one cries the wrong way!" Sadness is not wrong, it's just important that we can see God through our tears! I've been back to doing a lot of reading again, and I'm really enjoying it.
This morning, I noticed a big improvement in my pain level. Using the Fentanyl patch all the time is really helping my long-term pain, and it's enabling me to take the Dilaudid less, which is good. I also got to go from 60 mg. of Prednisone to 30 mg of Prednisone daily, so that made me feel much less moody, emotional, and wired!
After Bill and Cam left for school and work and 7:15, I lounged around in bed until the homeschoolers woke up at around 9 a.m. We spent the day doing out usual stuff, re: schoolwork, chores, etc. We were done by 3 p.m. at which point the kids had free time, and I lay down for a 3 hour nap. It was quite lovely. I woke up to Isaac bringing in flowers that he had picked for me. After that, I saw Cameron working on lesson plans for tomorrow. He has the day off of school and has offered to help me teach the homeshoolers. So, he is planning to teach a a film class and PE class, and I will do Bible, math, reading, and social studies. I'm looking forward to the help. And we also have the cleaners coming tomorrow, so it will be nice to have our Friday house tidy again! I do love Fridays!!!
Bill came home at 6 p.m., and he made a tasty pasta dish for dinner. It was great, and most of the kids ate it while watching Star Trek with Bill. We finished that up, and the kids took baths/showers before bed. We also tidied up the kids' bedrooms, so that the cleaners have a path into the rooms.
I made a few phone calls tonight to friends to let them know what's going on with my health. I haven't heard anything from Dr. Cohen today, so I'm just hanging in here. Hopefully, he's having some luck making appointments at UCLA for me. We'll soon see!
It's very late, and I have to be up by 9 a.m. tomorrow to let the cleaners in. We'll start homeschooling, too, when they get here. They do the upstairs first while we stay downstairs, and then we move upstairs while they clean downstairs. It works out quite well. But for now...I'm nodding off and I don't want to drop Isaac's netbook, so I'll sign off.
Good Night,
Much Love,
Michele
P.S. Happy Birthday Allan!!!
Wednesday, February 10, 2010
DAY TWO OF MEDICAL APPOINTMENTS...
Hi Friends,
After a night of no sleep thanks to steroids and my over-active brain, I got up too early this morning. Bill and I left for UCLA at 7:30 a.m. Traffic was the usual California gridlock on the freeway, and we were lucky to make it to my appointment with Dr. Karpouzas on time at 9:15. Dr. Karpouzas was surprised at all the medical drama I had incurred since my last visit with him 3 months ago. He examined me and will confer with Dr. Cohen by phone on my treatment plan. Meantime, he is decreasing my steroids and increasing my CellCept. He does not recommend more Rituxan for me at the current time -- but he needs more information from Dr. Cohen regarding the specific types of pneumonia and kidney infections I've had in the last 2 months. His concern is that it's not the right type of chemo for my brain. Also, he worries that the chemo is causing my immune-deificient body to develop infections that I'm unable to fight. And with all the resistance to antibiotics I've developed -- there are only a few IV antibiotics left I'm able to use successfully. So, after the morning at UCLA -- Bill and I ran one very important errand ... more details to follow... perhaps on Friday! Then we had a beautiful drive home through Malibu on the PCH -- the ocean was stunning today! We stopped at Del Taco on the way home for lunch.
By the time we made it home, it was about 1 p.m. Annie and the kids were finishing homeschooling, so I jumped in and lent a hand. They did journals today (I'm encouraging them to write down their feelings), and the topic today was how Annie could help them when she babysits. Isaac gave her the best compliment and wrote in his journal -- "Annie can help me by being my Mom when my real Mom is sick!" I thought it was very sweet, and I'm glad to have friends that we can love and rely on.
I lay down from 2-3 p.m. to take a nap before it was time to see Dr. Cohen. Annie and Molly went to pick up Cameron, and they stopped to get donuts from SpudNuts for an afterschool snack. Thanks, again, Annie! Nate and Isaac went over to play with Mattthew, but I heard they showed up later for donuts. I ate a huge donut, and it was very chocolate and very good. I also drank a chocolate milk, deciding that today was not the day to care about healthy eating choices. When I went to UCLA today, I discovered I had gained 15 lbs in 2 weeks from the steroids. Again, I am very very puffy!
We left at 4:15 for my 5 p.m. appointment with Dr. Cohen. He will call Dr. Karpouzas, but he has a completely different opinion on the Rituxan. He wants me to start back on it ASAP, and he doesn't think CellCept alone will help kick lupus' butt. So, to break the tie -- he's sending me to see 2 more UCLA specialists. They are both working on a Rituxan study for lupus patients. In case you haven't realized yet -- these drugs and treatments for lupus are all experimental. They can't ethically do controlled studies on people whose lives are in danger due to CNS lupus.
So, meanwhile, I can lower the steroids and up the CellCept,but not as high as Karpouzas was suggesting. Dr. Cohen will phone in some personal favors to get me in to see these new doctors, and we'll go from there. My pain is better under control with the higher-dosages of Dilaudid and Fentanyl. So, I have a 2 week reprieve until the final decision is to be made. I'm not sure if that's good or bad. We'll try to spend the next two weeks as "normally" as possible and go from there.
Annie and I got home at about 7 p.m. and Bill was home making dinner. Molly was thrilled because her Barbie vacation house arrived by UPS today. She saved up a bunch of her Christmas money to buy it. In a cute twist of niceness, Isaac and Nate helped her put the whole thing together. It, of course, required assembly and a lot of stickers, so she was lucky to have 2 helpful brothers.
Other than that, tonight passed quickly. I am tired and I hope for a restful, pain-free night of sleep. Cam has no school on Friday or Monday. So, after tomorrow, he'll have a 4 day weekend. That will be nice for all of us. I will still homeschool or do a field trip (if Bill's available to drive) -- but we can be more laid-back than usual.
Good night:-)
Much Love,
Michele
After a night of no sleep thanks to steroids and my over-active brain, I got up too early this morning. Bill and I left for UCLA at 7:30 a.m. Traffic was the usual California gridlock on the freeway, and we were lucky to make it to my appointment with Dr. Karpouzas on time at 9:15. Dr. Karpouzas was surprised at all the medical drama I had incurred since my last visit with him 3 months ago. He examined me and will confer with Dr. Cohen by phone on my treatment plan. Meantime, he is decreasing my steroids and increasing my CellCept. He does not recommend more Rituxan for me at the current time -- but he needs more information from Dr. Cohen regarding the specific types of pneumonia and kidney infections I've had in the last 2 months. His concern is that it's not the right type of chemo for my brain. Also, he worries that the chemo is causing my immune-deificient body to develop infections that I'm unable to fight. And with all the resistance to antibiotics I've developed -- there are only a few IV antibiotics left I'm able to use successfully. So, after the morning at UCLA -- Bill and I ran one very important errand ... more details to follow... perhaps on Friday! Then we had a beautiful drive home through Malibu on the PCH -- the ocean was stunning today! We stopped at Del Taco on the way home for lunch.
By the time we made it home, it was about 1 p.m. Annie and the kids were finishing homeschooling, so I jumped in and lent a hand. They did journals today (I'm encouraging them to write down their feelings), and the topic today was how Annie could help them when she babysits. Isaac gave her the best compliment and wrote in his journal -- "Annie can help me by being my Mom when my real Mom is sick!" I thought it was very sweet, and I'm glad to have friends that we can love and rely on.
I lay down from 2-3 p.m. to take a nap before it was time to see Dr. Cohen. Annie and Molly went to pick up Cameron, and they stopped to get donuts from SpudNuts for an afterschool snack. Thanks, again, Annie! Nate and Isaac went over to play with Mattthew, but I heard they showed up later for donuts. I ate a huge donut, and it was very chocolate and very good. I also drank a chocolate milk, deciding that today was not the day to care about healthy eating choices. When I went to UCLA today, I discovered I had gained 15 lbs in 2 weeks from the steroids. Again, I am very very puffy!
We left at 4:15 for my 5 p.m. appointment with Dr. Cohen. He will call Dr. Karpouzas, but he has a completely different opinion on the Rituxan. He wants me to start back on it ASAP, and he doesn't think CellCept alone will help kick lupus' butt. So, to break the tie -- he's sending me to see 2 more UCLA specialists. They are both working on a Rituxan study for lupus patients. In case you haven't realized yet -- these drugs and treatments for lupus are all experimental. They can't ethically do controlled studies on people whose lives are in danger due to CNS lupus.
So, meanwhile, I can lower the steroids and up the CellCept,but not as high as Karpouzas was suggesting. Dr. Cohen will phone in some personal favors to get me in to see these new doctors, and we'll go from there. My pain is better under control with the higher-dosages of Dilaudid and Fentanyl. So, I have a 2 week reprieve until the final decision is to be made. I'm not sure if that's good or bad. We'll try to spend the next two weeks as "normally" as possible and go from there.
Annie and I got home at about 7 p.m. and Bill was home making dinner. Molly was thrilled because her Barbie vacation house arrived by UPS today. She saved up a bunch of her Christmas money to buy it. In a cute twist of niceness, Isaac and Nate helped her put the whole thing together. It, of course, required assembly and a lot of stickers, so she was lucky to have 2 helpful brothers.
Other than that, tonight passed quickly. I am tired and I hope for a restful, pain-free night of sleep. Cam has no school on Friday or Monday. So, after tomorrow, he'll have a 4 day weekend. That will be nice for all of us. I will still homeschool or do a field trip (if Bill's available to drive) -- but we can be more laid-back than usual.
Good night:-)
Much Love,
Michele
Tuesday, February 9, 2010
DAY ONE OF MEDICAL APPOINTMENTS...
Hi Friends,
I'm typing this in the dark, camped out in Nate and Isaac's room. I'm on the floor between their beds, because they were talking and not going to sleep. And it's late, and they need to sleep. So, hopefully this will help and I won't make too many mistakes in the dark.
Today started out with a slight rain, and then we even had some thunder and lightning. I had to medicate poor, old Bingo because he was freaking out. One percocet and he's under control. He's a huge old chocolate lab and he's so scared of thunderstorms that for some reason he tries to jump up on things -- think a 100 lb dog up on the kitchen countertops. It just doesn't work for me.
Anyway, after getting the kids going and medicating the dog -- my home nurse, Alice, came. She changed my PICC line dressing and drew blood for all the labs. They're supposed to be done STAT and be ready for the doctors tomorrow. Alice is very nice and even takes the time to explain everything she does to my kids who are very interested. It's kind of like I'm their science/health lesson once a week when she shows up.
We managed to homeschool after that until about 1:30 when Annie arrived. She nicely volunteered (or maybe was drafted, I'm not sure!) to take me to see Dr. Lin in Thousand Oaks. He is the pain management doctor -- because now I apparently need a doctor just for pain management. Anyway, it's definitely a pain, because I can't drive at all due to meds and the lupus flare -- I am very very shaky again! But I am blessed with people who shuttle me wherever I go and even make it fun!!!
We left early for Thousand Oaks since it was raining and put Molly in charge of the boys. She had an easy time of it, though -- because soon enough Matthew called and invited them both over to his house.
My doctor's visit went well. Dr. Lin is the one of the doctors that I saw while in the hospital, so I didn't have to repeat my whole story to him and that was nice. He upped my Dilaudid to 4mg every 4 hours (for short-term pain relief) and put me back on the Fentanyl patch (you change it every 3 days) for long-term pain relief. They're both opiates, but I've used them in the past without problems -- so hopefully, they will get the pain under control until this flare subsides -- or maybe we someday (over the rainbow) will eventually get the lupus into remission. So, I'm not happy about opiates, but glad for pain relief and a responsible doctor to prescribe them. It was an insurance nightmare, however, because he's out of our network! And I'm not even going to get into that story tonight -- because it's too late!
After the doctor's visit, we hit the pharmacy to pick up the new meds. We stopped at McDonald's for a late lunch. And then I ran a few errands with Annie. It was quite honestly, just nice to get out of the house. We called to check on the kids, who were doing just fine without us. Cameron was home by then and had everything well under control. I am very proud of how responsible he and Molly are with the younger ones!
Bill ended up beating us home, and when we got there he was cooking dinner -- butternut squash soup, salad, and croissants. Annie and I had stopped to pick up dessert and brought caramel apples from the Rocky Mountain Chocolate Factory. Thanks, Annie!
We ate dinner and hung out with the kids. Annie (or should I say Florence Nightingale) drove back to Simi to bandage her Dad's ear. He just had a procedure done and needs her help, too. That's another long story that I won't get into to. But she's coming back tonight, and she will spend the night.
Tomorrow, Bill and I need to leave at 7:15 for UCLA, so Annie will take Cameron to school and then hang out with the kids until we get back. At that point, Bill needs to go to work and Annie will take me to my 5:00 appointment with Dr. Cohen after picking up Cam from school. At least that's the tentative plan, I think!
It'll be interesting to see what all the doctors decide on tomorrow regarding my treatment plan. Please pray for God's hand to guide them. And pray for Bill and I to have clarity of mind regarding the decisions we need to make!
Much Love,
Michele
P.S.--Cam had fun sociology homework tonight and I got to help him. He was the "emporer of his own kingdom in the middle ages" and had to decide on coming-of-age rituals for the men and women there. He decided that at age 16, the boys would be dropped off in the wilderness for a 5 day reflection period. They would need to use that time to decide on their future jobs and purpose. They would have to live off the land and find their way home, bringing him a token to represent what they learned. The girls (being social beings) at 16 were to spend 5 days with the village women elders, learning to take care of children and to cook. They each were to create their own unique dish in a cooking contest, which he would judge. Then they were to plan a banquet for the men's homecoming. At that homecoming, they would get to pick a husband! I think Cam would make a great emporer. Now, we'll see what his sociology teacher thinks :-)
I'm typing this in the dark, camped out in Nate and Isaac's room. I'm on the floor between their beds, because they were talking and not going to sleep. And it's late, and they need to sleep. So, hopefully this will help and I won't make too many mistakes in the dark.
Today started out with a slight rain, and then we even had some thunder and lightning. I had to medicate poor, old Bingo because he was freaking out. One percocet and he's under control. He's a huge old chocolate lab and he's so scared of thunderstorms that for some reason he tries to jump up on things -- think a 100 lb dog up on the kitchen countertops. It just doesn't work for me.
Anyway, after getting the kids going and medicating the dog -- my home nurse, Alice, came. She changed my PICC line dressing and drew blood for all the labs. They're supposed to be done STAT and be ready for the doctors tomorrow. Alice is very nice and even takes the time to explain everything she does to my kids who are very interested. It's kind of like I'm their science/health lesson once a week when she shows up.
We managed to homeschool after that until about 1:30 when Annie arrived. She nicely volunteered (or maybe was drafted, I'm not sure!) to take me to see Dr. Lin in Thousand Oaks. He is the pain management doctor -- because now I apparently need a doctor just for pain management. Anyway, it's definitely a pain, because I can't drive at all due to meds and the lupus flare -- I am very very shaky again! But I am blessed with people who shuttle me wherever I go and even make it fun!!!
We left early for Thousand Oaks since it was raining and put Molly in charge of the boys. She had an easy time of it, though -- because soon enough Matthew called and invited them both over to his house.
My doctor's visit went well. Dr. Lin is the one of the doctors that I saw while in the hospital, so I didn't have to repeat my whole story to him and that was nice. He upped my Dilaudid to 4mg every 4 hours (for short-term pain relief) and put me back on the Fentanyl patch (you change it every 3 days) for long-term pain relief. They're both opiates, but I've used them in the past without problems -- so hopefully, they will get the pain under control until this flare subsides -- or maybe we someday (over the rainbow) will eventually get the lupus into remission. So, I'm not happy about opiates, but glad for pain relief and a responsible doctor to prescribe them. It was an insurance nightmare, however, because he's out of our network! And I'm not even going to get into that story tonight -- because it's too late!
After the doctor's visit, we hit the pharmacy to pick up the new meds. We stopped at McDonald's for a late lunch. And then I ran a few errands with Annie. It was quite honestly, just nice to get out of the house. We called to check on the kids, who were doing just fine without us. Cameron was home by then and had everything well under control. I am very proud of how responsible he and Molly are with the younger ones!
Bill ended up beating us home, and when we got there he was cooking dinner -- butternut squash soup, salad, and croissants. Annie and I had stopped to pick up dessert and brought caramel apples from the Rocky Mountain Chocolate Factory. Thanks, Annie!
We ate dinner and hung out with the kids. Annie (or should I say Florence Nightingale) drove back to Simi to bandage her Dad's ear. He just had a procedure done and needs her help, too. That's another long story that I won't get into to. But she's coming back tonight, and she will spend the night.
Tomorrow, Bill and I need to leave at 7:15 for UCLA, so Annie will take Cameron to school and then hang out with the kids until we get back. At that point, Bill needs to go to work and Annie will take me to my 5:00 appointment with Dr. Cohen after picking up Cam from school. At least that's the tentative plan, I think!
It'll be interesting to see what all the doctors decide on tomorrow regarding my treatment plan. Please pray for God's hand to guide them. And pray for Bill and I to have clarity of mind regarding the decisions we need to make!
Much Love,
Michele
P.S.--Cam had fun sociology homework tonight and I got to help him. He was the "emporer of his own kingdom in the middle ages" and had to decide on coming-of-age rituals for the men and women there. He decided that at age 16, the boys would be dropped off in the wilderness for a 5 day reflection period. They would need to use that time to decide on their future jobs and purpose. They would have to live off the land and find their way home, bringing him a token to represent what they learned. The girls (being social beings) at 16 were to spend 5 days with the village women elders, learning to take care of children and to cook. They each were to create their own unique dish in a cooking contest, which he would judge. Then they were to plan a banquet for the men's homecoming. At that homecoming, they would get to pick a husband! I think Cam would make a great emporer. Now, we'll see what his sociology teacher thinks :-)
Monday, February 8, 2010
I HAVE A KILLER HEADACHE!!!
Hi Friends,
Today was a rough day, but I made it through -- I WILL SURVIVE!!! I spent the morning working through health care redtape. It took all day, but the home health nurse and my main doctor finally communicated and orders have been written for my blood work, which will be done tomorrow morning along with a PICC line dressing change at 10 a.m. when Alice (the nurse) comes for her weekly visit. I also made an appointment for a 2:30 visit with Dr.Lin, who is in charge of my pain management. I need his help badly, because my head is back to killing me, and I have excruciating pain when I breathe. Not fun!!! Annie is going to come tomorrow to take me, as I can't drive myself, and Bill needs to pick up Cam and then go back to work.
Thanks, Florence Nightingale!!! She's also going to help us on Friday with the kids and the two doctors' appointments that day -- one with Karpouzas in UCLA and one with Cohen in Thousand Oaks.
So, the headache was awful today, and I just had to suck it up and take more Dilaudid than I like to. It enabled me to homeschool the kids and do what needed to be done around the house -- but not much more. I even accomplished a bath today, since they'll be making my PICC line fresh tomorrow.
The kids had fun playing with their friends this afternoon. And Bill made pigs in a blanket for dinner, so he was very popular. After dinner, Nate and Isaac did baths while Cam and Molly finished some homework with Bill. Then before I knew it, everyone was clean and in bed. After a last-minute trip to Walgreen's for med -- Bill and I are just hanging out. He's doing some paperwork, and I need to work on gathering up some records for my doctor's appointment tomorrow. Wish me luck!!!
Much Love,
Michele
Today was a rough day, but I made it through -- I WILL SURVIVE!!! I spent the morning working through health care redtape. It took all day, but the home health nurse and my main doctor finally communicated and orders have been written for my blood work, which will be done tomorrow morning along with a PICC line dressing change at 10 a.m. when Alice (the nurse) comes for her weekly visit. I also made an appointment for a 2:30 visit with Dr.Lin, who is in charge of my pain management. I need his help badly, because my head is back to killing me, and I have excruciating pain when I breathe. Not fun!!! Annie is going to come tomorrow to take me, as I can't drive myself, and Bill needs to pick up Cam and then go back to work.
Thanks, Florence Nightingale!!! She's also going to help us on Friday with the kids and the two doctors' appointments that day -- one with Karpouzas in UCLA and one with Cohen in Thousand Oaks.
So, the headache was awful today, and I just had to suck it up and take more Dilaudid than I like to. It enabled me to homeschool the kids and do what needed to be done around the house -- but not much more. I even accomplished a bath today, since they'll be making my PICC line fresh tomorrow.
The kids had fun playing with their friends this afternoon. And Bill made pigs in a blanket for dinner, so he was very popular. After dinner, Nate and Isaac did baths while Cam and Molly finished some homework with Bill. Then before I knew it, everyone was clean and in bed. After a last-minute trip to Walgreen's for med -- Bill and I are just hanging out. He's doing some paperwork, and I need to work on gathering up some records for my doctor's appointment tomorrow. Wish me luck!!!
Much Love,
Michele
Sunday, February 7, 2010
GOD IS RAINING DOWN SKITTLES ON ME:-)
Matthew 6:19-21: "Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also."
Hi Friends!
We started out our day doing something we hadn't done in far too long. We tried out a new church that is very near to our new digs in Oxnard. For a while we had been attempting to commute back to our Simi Valley church. But the commute was difficult, especially with my health being fragile. And I realized today that while I love Simi Prez (now StoneBridge), I was sort of hanging onto it in an unhealthy way. I didn't want to go to a new church and be seen as needy. Typical, isn't it? I thought I needed to get my life more in order (more perfect) before finding a new church. Well, this week God slapped me upside the head with the absurdity of that thought. I realized I was just being too proud and didn't want to go to a new church where I might be seen as sick or needy. Because of that, it was easier to hang onto our Simi church where everyone knew our story anway.
Everyone was cooperative about trying out a new church. We went to one called Gold Coast, which offers two services, one at 9:15 and one at 10:45 ---obviously we went to the later service. All the kids set their alarms and were up and getting ready by 9 a.m. They all responded to the idea in their own unique ways as they are also attached to our Simi church. Isaac said he'd like to go to Sunday school, but then decided it might be "too scarey!" Nate is wondering if church might be a good place to "find a girlfriend?" (For goodness sake's -- he's 11!) Molly was excited about meeting friends and joining a new youth group. She's such a social butterfly! And Cameron (Mr. Autistic and Change is Bad) said he accepts our decision to go to a closer church, but that when he's 18, he'll probably go back to our older church "Because I really like it."
The church service was nice. It's nondenominational, but seems to fit in with our beliefs. The pastor and people there were very friendly. The message was on "The Me I Want to Be," focusing on God's financial plan. The pastor used skittles as examples of God's blessings on us and everyone got a pack of skittles. The kids, of course, loved it. The junior/senior high groups (Nate, Molly, Cam's age) were on a retreat today -- so all the kids went into church with us. Next week they'll get to see what the children's programming is like! But it definitely felt good to worship again. I wasn't even going to share my sob story, but on the way out -- one of the elders stopped me to ask if he could pray for me. So, I told him I'm going through chemo, and now I have more prayer warriors in my army! You can never have too many...
After church and lunch, Bill layed down for a nap. I was afraid to, because I've just started to sleep at night again. And I didn't want to jinx myself! So, while Bill slept -- the kids and I did shrinky dinks! And you know, if you've already read my facebook --- I LOVE SHRINKY DINKS :-) I will never get too old to watch them curl and shrink up. I now know why the box says ages 7-97. Because if I live to be 97 or older, I'll still be playing with Shrinky Dinks!
After our shrinky dink fun, Molly, Nate, and Isaac, and I went to the park. I played basketball...around the world... with Nate. We were both surprised when I beat his little bootie! With a triple PICC line in my arm, I thought it was a pretty big accomplishment. Nate was a good sport, though -- he seemed just to be glad to spend some time with me. I don't get out much these day, that's for sure!
Bill picked up Molly and Isaac at the park to take them grocery shopping with him. Nate found some friends to play with. I went for a walk around the park and then headed home... where for some reason (Can you say steroid energy?), I felt the need to go into a major baking frenzy. For months, I've been wanting to bake but had no energy -- so today, I did and I made 2 types of muffins and pancakes.
When everyone arrived home, they were a bit startled to see me cooking, but happily gobbled up the "breakfast for dinner" idea along with either Root Beer floats or Purple Moo Cow drinks. I know, Bill makes much healthier things for dinner -- but I am fun when I get going. And at this point, I'm trying to make happy memories for the kids. I don't want them to remember a "sickly" mother whenever they think back on their childhood.
And we all put groceries away, and then I helped Cam with his geography homework. He's doing longitude and latitude. I can handle that even with a swollen brain. Yay, me:-) Only after doing all that, did I concede that perhaps I had overdone it a bit today. So, since then, I've been playing around on facebook and the internet, and generally giving my family (especially Bill -- who I can now torment on FB) a hard time!
Sadly, it's almost bedtime for the kids. The younger two go to bed at 9 p.m., and the older two go to bed at 10 p.m. on school nights. It's was a fun, typical day. I only have 2 more normal days left until I go back into "patient mode" on Wednesday with my new treatment plan. No worries, I still plan to kick lupus' butt :-)
Good Night All and God Bless!!!
Much Love,
Michele
Hi Friends!
We started out our day doing something we hadn't done in far too long. We tried out a new church that is very near to our new digs in Oxnard. For a while we had been attempting to commute back to our Simi Valley church. But the commute was difficult, especially with my health being fragile. And I realized today that while I love Simi Prez (now StoneBridge), I was sort of hanging onto it in an unhealthy way. I didn't want to go to a new church and be seen as needy. Typical, isn't it? I thought I needed to get my life more in order (more perfect) before finding a new church. Well, this week God slapped me upside the head with the absurdity of that thought. I realized I was just being too proud and didn't want to go to a new church where I might be seen as sick or needy. Because of that, it was easier to hang onto our Simi church where everyone knew our story anway.
Everyone was cooperative about trying out a new church. We went to one called Gold Coast, which offers two services, one at 9:15 and one at 10:45 ---obviously we went to the later service. All the kids set their alarms and were up and getting ready by 9 a.m. They all responded to the idea in their own unique ways as they are also attached to our Simi church. Isaac said he'd like to go to Sunday school, but then decided it might be "too scarey!" Nate is wondering if church might be a good place to "find a girlfriend?" (For goodness sake's -- he's 11!) Molly was excited about meeting friends and joining a new youth group. She's such a social butterfly! And Cameron (Mr. Autistic and Change is Bad) said he accepts our decision to go to a closer church, but that when he's 18, he'll probably go back to our older church "Because I really like it."
The church service was nice. It's nondenominational, but seems to fit in with our beliefs. The pastor and people there were very friendly. The message was on "The Me I Want to Be," focusing on God's financial plan. The pastor used skittles as examples of God's blessings on us and everyone got a pack of skittles. The kids, of course, loved it. The junior/senior high groups (Nate, Molly, Cam's age) were on a retreat today -- so all the kids went into church with us. Next week they'll get to see what the children's programming is like! But it definitely felt good to worship again. I wasn't even going to share my sob story, but on the way out -- one of the elders stopped me to ask if he could pray for me. So, I told him I'm going through chemo, and now I have more prayer warriors in my army! You can never have too many...
After church and lunch, Bill layed down for a nap. I was afraid to, because I've just started to sleep at night again. And I didn't want to jinx myself! So, while Bill slept -- the kids and I did shrinky dinks! And you know, if you've already read my facebook --- I LOVE SHRINKY DINKS :-) I will never get too old to watch them curl and shrink up. I now know why the box says ages 7-97. Because if I live to be 97 or older, I'll still be playing with Shrinky Dinks!
After our shrinky dink fun, Molly, Nate, and Isaac, and I went to the park. I played basketball...around the world... with Nate. We were both surprised when I beat his little bootie! With a triple PICC line in my arm, I thought it was a pretty big accomplishment. Nate was a good sport, though -- he seemed just to be glad to spend some time with me. I don't get out much these day, that's for sure!
Bill picked up Molly and Isaac at the park to take them grocery shopping with him. Nate found some friends to play with. I went for a walk around the park and then headed home... where for some reason (Can you say steroid energy?), I felt the need to go into a major baking frenzy. For months, I've been wanting to bake but had no energy -- so today, I did and I made 2 types of muffins and pancakes.
When everyone arrived home, they were a bit startled to see me cooking, but happily gobbled up the "breakfast for dinner" idea along with either Root Beer floats or Purple Moo Cow drinks. I know, Bill makes much healthier things for dinner -- but I am fun when I get going. And at this point, I'm trying to make happy memories for the kids. I don't want them to remember a "sickly" mother whenever they think back on their childhood.
And we all put groceries away, and then I helped Cam with his geography homework. He's doing longitude and latitude. I can handle that even with a swollen brain. Yay, me:-) Only after doing all that, did I concede that perhaps I had overdone it a bit today. So, since then, I've been playing around on facebook and the internet, and generally giving my family (especially Bill -- who I can now torment on FB) a hard time!
Sadly, it's almost bedtime for the kids. The younger two go to bed at 9 p.m., and the older two go to bed at 10 p.m. on school nights. It's was a fun, typical day. I only have 2 more normal days left until I go back into "patient mode" on Wednesday with my new treatment plan. No worries, I still plan to kick lupus' butt :-)
Good Night All and God Bless!!!
Much Love,
Michele
Saturday, February 6, 2010
GOD KNOWS EVERY HAIR ON MY HEAD... AND EVEN HAS COUNT OF THOSE THAT ARE FALLING OUT!
"Are not two sparrows sold for a farthing? And one of them shall not fall on the ground without your Father. But the very hairs of your head are all numbered. Fear ye not therefore, ye are of more value than many sparrows." --Matthew 10:29-31
Hi Friends,
First for the exciting news, I went to sleep at 9:30 p.m. last night and slept until 9:30 a.m. this morning. I didn't wake up once during the night for Dilaudid. It felt so good to get a full night's rest! Even though my headache came back shortly after waking up -- it was a brief pain respite, and for that I was quite thankful!
It's still cloudy outside with a bit of rain today. Nate and Matthew are at the park, because you can only keep young boys inside for so long. Molly spent the morning with some of her new friends, sewing on their sewing machines at Amber's house. Bill is working on taxes. Fun, fun! And Cam and Isaac are watching: Garfield: A Tale of 2 Kitties along with our 2 kitties, Itty Bitty and Bo Bo! It's cute.
After my pleasant long sleep, I spent the morning in bed reading a book that Annie lent me. It felt great to just laze in bed and finish the book: Time for Grace, by Kate Welsh. The Bible verse I listed above was on the first page of the book. My hair is falling out at an alarming rate from the lupus currently, and I don't think my upcoming chemo will help! So, I found it an apppropriate and comforting verse to start my day out with. God knows every hair on my head, and he even keeps track of the ones that are falling out! Yay, God!
I think I will venture out of my cozy bed for a bit to take a bath and change into clean jammies. Bathing is a real adventure with a PICC line, since I have to cover it with plastic wrap and keep it dry! So, I can't bathe as often as I'd like. You truly begin to appreciate the little things in a case like this!
More tomorrow...
Much Love,
Michele
Hi Friends,
First for the exciting news, I went to sleep at 9:30 p.m. last night and slept until 9:30 a.m. this morning. I didn't wake up once during the night for Dilaudid. It felt so good to get a full night's rest! Even though my headache came back shortly after waking up -- it was a brief pain respite, and for that I was quite thankful!
It's still cloudy outside with a bit of rain today. Nate and Matthew are at the park, because you can only keep young boys inside for so long. Molly spent the morning with some of her new friends, sewing on their sewing machines at Amber's house. Bill is working on taxes. Fun, fun! And Cam and Isaac are watching: Garfield: A Tale of 2 Kitties along with our 2 kitties, Itty Bitty and Bo Bo! It's cute.
After my pleasant long sleep, I spent the morning in bed reading a book that Annie lent me. It felt great to just laze in bed and finish the book: Time for Grace, by Kate Welsh. The Bible verse I listed above was on the first page of the book. My hair is falling out at an alarming rate from the lupus currently, and I don't think my upcoming chemo will help! So, I found it an apppropriate and comforting verse to start my day out with. God knows every hair on my head, and he even keeps track of the ones that are falling out! Yay, God!
I think I will venture out of my cozy bed for a bit to take a bath and change into clean jammies. Bathing is a real adventure with a PICC line, since I have to cover it with plastic wrap and keep it dry! So, I can't bathe as often as I'd like. You truly begin to appreciate the little things in a case like this!
More tomorrow...
Much Love,
Michele
Friday, February 5, 2010
ALWAYS GIVE THANKS FOR EVERYTHING...
"Always give thanks for everything to our God and Father in the name of our Lord Jesus Christ." Eph. 5:20
Hi Friends,
While homeschooling today, this was our memory verse. It hit me that it's often easier to be thankful when life seems to be going your way. It can be more challenging to be thankful when life seems difficult at best! But this is God's Word and it seems to me that the two important words are -- ALWAYS and EVERYTHING! So, I do thank God for everything always whether it seems good or bad to me. Because as we established yesterday -- I'm just a silly little sheep who often doesn't know the whole plan!
So, the kids and I made lists of some things we're thankful for today. Thought you might like it if I shared:
Molly: "my friends, my family, myself, God, Jesus, Holy Spirit, my pets, Barbie dolls, reading, horseback riding, drawing, the rain, and spring...."
Nate: "my pets, my family, my friends, our house, the land, my cozy bed, the world, my MP3, my PS2, my Xbox, the Wii..."
Isaac: "my mom, my dad, Itty Bitty Kitty, BoBo, my bed, Bingo, my house, my Jesus, my friend, my laptop..."
Michele: "sleep and being able to wake up early this morning; housecleaners who not only clean my messy house, but pray for me when I'm in the hospital; Isaac snuggling under his blankie holding Snuggles his bear; warm blankets fresh from the dryer; Molly's beautiful braided hair and the sound of her reading out loud; Itty Bitty Kitty snuggling under the covers with me; Bo Bo trapped in my closet and meowing for release; a mountain man for a husband; Nate's chocolate face after eating donuts that Bill brought home; a nice,knowledgable new Home Healthcare Nurse arriving today; and Finally -- We're all home together and safe for the weekend with a soft rain falling outside!!!"
So, it's only 4:30 and I already have so much to be thankful for. It's an interesting exercise in perspective. Focus on the good and be thankful for everything -- even the bad. It's God's plan, not mine...thank goodness, 'cause I'd likely mess it up :-0
I was up early this morning -- still not getting much sleep. Cameron is awfully surprised to see me each morning at 6:45 when he gets up. In the past, I would have still been sleeping. Today the cleaners came at 9:30 a.m., and they were so glad to see me. We have a slight communication barrier (English-Spanish), but Molly told me last week they asked about me, and then stopped to pray together for my health before starting to clean.
I took advantage of my early morning energy by homeschooling. With Bill's help (it was his day off), we were done by 1 p.m. At that point, my new nurse came by and stayed for about an hour getting my history and doing intake. She's great and will be a good match for me with previous experience in neurology and pain management. She'll be back on Monday to change my PICC line dressing and draw blood, so that the doctors have it by Wednesday when they need to make their "Grand Plans" for me. Other than that, no interesting news. My vitals were OK, not great -- but OK. Still having problems with my lungs -- very decreased on the left side especially. Oh well, who really needs 2 lungs? I'm sure they'll figure something out!
Bill had a doctor's appointment today, and they upped his meds for his Parkinson's. We're quite a pair! After that he picked up Cam from school and they stopped at SpudNuts and brought us all donuts home for an after-school snack. The weather is rainy outside right now! And I guess traffic was crazy here in the usually sunny California!
I'm just laying here in my pjs and resting in bed. I have no other plans for the night. More tomorrow...
Much Love,
Michele
Hi Friends,
While homeschooling today, this was our memory verse. It hit me that it's often easier to be thankful when life seems to be going your way. It can be more challenging to be thankful when life seems difficult at best! But this is God's Word and it seems to me that the two important words are -- ALWAYS and EVERYTHING! So, I do thank God for everything always whether it seems good or bad to me. Because as we established yesterday -- I'm just a silly little sheep who often doesn't know the whole plan!
So, the kids and I made lists of some things we're thankful for today. Thought you might like it if I shared:
Molly: "my friends, my family, myself, God, Jesus, Holy Spirit, my pets, Barbie dolls, reading, horseback riding, drawing, the rain, and spring...."
Nate: "my pets, my family, my friends, our house, the land, my cozy bed, the world, my MP3, my PS2, my Xbox, the Wii..."
Isaac: "my mom, my dad, Itty Bitty Kitty, BoBo, my bed, Bingo, my house, my Jesus, my friend, my laptop..."
Michele: "sleep and being able to wake up early this morning; housecleaners who not only clean my messy house, but pray for me when I'm in the hospital; Isaac snuggling under his blankie holding Snuggles his bear; warm blankets fresh from the dryer; Molly's beautiful braided hair and the sound of her reading out loud; Itty Bitty Kitty snuggling under the covers with me; Bo Bo trapped in my closet and meowing for release; a mountain man for a husband; Nate's chocolate face after eating donuts that Bill brought home; a nice,knowledgable new Home Healthcare Nurse arriving today; and Finally -- We're all home together and safe for the weekend with a soft rain falling outside!!!"
So, it's only 4:30 and I already have so much to be thankful for. It's an interesting exercise in perspective. Focus on the good and be thankful for everything -- even the bad. It's God's plan, not mine...thank goodness, 'cause I'd likely mess it up :-0
I was up early this morning -- still not getting much sleep. Cameron is awfully surprised to see me each morning at 6:45 when he gets up. In the past, I would have still been sleeping. Today the cleaners came at 9:30 a.m., and they were so glad to see me. We have a slight communication barrier (English-Spanish), but Molly told me last week they asked about me, and then stopped to pray together for my health before starting to clean.
I took advantage of my early morning energy by homeschooling. With Bill's help (it was his day off), we were done by 1 p.m. At that point, my new nurse came by and stayed for about an hour getting my history and doing intake. She's great and will be a good match for me with previous experience in neurology and pain management. She'll be back on Monday to change my PICC line dressing and draw blood, so that the doctors have it by Wednesday when they need to make their "Grand Plans" for me. Other than that, no interesting news. My vitals were OK, not great -- but OK. Still having problems with my lungs -- very decreased on the left side especially. Oh well, who really needs 2 lungs? I'm sure they'll figure something out!
Bill had a doctor's appointment today, and they upped his meds for his Parkinson's. We're quite a pair! After that he picked up Cam from school and they stopped at SpudNuts and brought us all donuts home for an after-school snack. The weather is rainy outside right now! And I guess traffic was crazy here in the usually sunny California!
I'm just laying here in my pjs and resting in bed. I have no other plans for the night. More tomorrow...
Much Love,
Michele
Thursday, February 4, 2010
A LOVE LETTER TO GOD FROM ONE OF HIS SHEEP!!!
"Suppose one of you has a hundred sheep and loses one of them. Does he not leave the ninety-nine in the open country and go after the lost sheep until he finds it? And when he finds it, he joyfully puts it on his shoulders and goes home. Then, he calls his friends and neighbors together and says, 'Rejoice with me; I have found my lost sheep.'" Luke 15:4-6
Hi Friends!
I woke up this morning scared. I got some sleep last night, but had to get up 4 times over 10 hours to take Dilaudid. I'm allowed to take 4 mg every 4 hours, with 2 mg every 2 hours for break-through pain. The mega-pain killer took the edge off and helped me sleep -- but I woke up in such severe pain from the lupus. My head and chest hurt so much. It's literally like I can feel my own immune system attacking and damaging my brain, heart, and lungs. ICKY!!! I know. I started my day with prayer and a new devotional that Mom and Dad Bland (Thank you, thank you, thank you!!!) sent us for Christmas. I told God how scared I was and how I was struggling with feeling out of control.
As always, God answers prayers. The Bible verse above was the one I read today. And the devotional reminded me that God's heart is full of joy because of me. He celebrates over me today. He delights in me and is so glad that I'm home. After that quiet time with God, I was able to tell Him that I fully rely on Him and trust in Him. I rejoice that the King of All, rejoices in little, whiney me. I don't understand (or even like, to be honest!) all the plans He has for me. But I trust and know that God will give me the courage and protection I need to weather any storm.
And life went on... we homeschooled... we did chores... Cam and Bill came home... Nate and Isaac are at the park with Matthew... Molly is horseback riding with Amber.
I made it one more day. At this point that is an accomplishment. I am determined not to take the Dilaudid during the day -- I need to be a functional Mom. But the pain is getting bad, and I'm almost through the day. Soon, I can have that relief again.
I'll sign my love letter to God and you...
Much Love,
A lost (and found) little sheep
Hi Friends!
I woke up this morning scared. I got some sleep last night, but had to get up 4 times over 10 hours to take Dilaudid. I'm allowed to take 4 mg every 4 hours, with 2 mg every 2 hours for break-through pain. The mega-pain killer took the edge off and helped me sleep -- but I woke up in such severe pain from the lupus. My head and chest hurt so much. It's literally like I can feel my own immune system attacking and damaging my brain, heart, and lungs. ICKY!!! I know. I started my day with prayer and a new devotional that Mom and Dad Bland (Thank you, thank you, thank you!!!) sent us for Christmas. I told God how scared I was and how I was struggling with feeling out of control.
As always, God answers prayers. The Bible verse above was the one I read today. And the devotional reminded me that God's heart is full of joy because of me. He celebrates over me today. He delights in me and is so glad that I'm home. After that quiet time with God, I was able to tell Him that I fully rely on Him and trust in Him. I rejoice that the King of All, rejoices in little, whiney me. I don't understand (or even like, to be honest!) all the plans He has for me. But I trust and know that God will give me the courage and protection I need to weather any storm.
And life went on... we homeschooled... we did chores... Cam and Bill came home... Nate and Isaac are at the park with Matthew... Molly is horseback riding with Amber.
I made it one more day. At this point that is an accomplishment. I am determined not to take the Dilaudid during the day -- I need to be a functional Mom. But the pain is getting bad, and I'm almost through the day. Soon, I can have that relief again.
I'll sign my love letter to God and you...
Much Love,
A lost (and found) little sheep
Wednesday, February 3, 2010
DILAUDID ON BOARD!!!
Hi Again!
Quick update -- restarted dilaudid -- major opiate drug, 8-10 more times more powerful than morphine. But it's helping, took my pain level from 10/10 to 4/10. I can live with that at least for a bit. Also took my Ambien and hoping to get some sleep tonight.
Love,
Shel
Quick update -- restarted dilaudid -- major opiate drug, 8-10 more times more powerful than morphine. But it's helping, took my pain level from 10/10 to 4/10. I can live with that at least for a bit. Also took my Ambien and hoping to get some sleep tonight.
Love,
Shel
"ROID RAGE!!!"
Hi Friends,
This will be short as I feel really bad. I must be bipolar or on steroids! One day I'm up, the next day, I'm down. Last night my blood pressure and heart rate spiked, and even with the meds prescribed to fix that -- I ended up not able to sleep all night. Basically -- slept from 7 a.m.-11a.m. this morning, at which point I really needed to get up and help the kids with their schooling.
I spent a large part of today dealing with medical/insurance red tape. Finally, got home health care nursing set up again. And the insurance can be a real pain when it comes to covering the chemo and other necessary treatments. Then, I discovered, my hospital discharge instructions were all messed up! I was supposed to have several prescriptions for pain medications that I never received. So, after another conference call with Dr. Cohen -- Bill was dispatched to Thousand Oaks to pick up prescriptions -- since the meds are opiates for pain, they cannot be called or faxed, etc. (It's not like he has a job or anything! and I keep thinking I'm too sick to deal with all of this!) Hopefully, I will get some pain relief and sleep tonight, and be able to hang in there until Wednesday -- "Oh, lovely and fun-filled day at UCLA!"
The younger kids got their schoolwork done and played with friends when they finished. Molly is excited because she's been invited to go to her friend, Amber's horseback riding lesson with her tomorrow. We'll get some info on it and see if it's something she may want to do!
Cameron had an early-out day and was done with school one hour earlier than usual. So, that seemed a bit odd. Other than that -- we just had dinner and rented "Cloudy with a Chance of Meatballs" for the kids to watch as it came out on PPV yesterday.
Much Love,
Michele
This will be short as I feel really bad. I must be bipolar or on steroids! One day I'm up, the next day, I'm down. Last night my blood pressure and heart rate spiked, and even with the meds prescribed to fix that -- I ended up not able to sleep all night. Basically -- slept from 7 a.m.-11a.m. this morning, at which point I really needed to get up and help the kids with their schooling.
I spent a large part of today dealing with medical/insurance red tape. Finally, got home health care nursing set up again. And the insurance can be a real pain when it comes to covering the chemo and other necessary treatments. Then, I discovered, my hospital discharge instructions were all messed up! I was supposed to have several prescriptions for pain medications that I never received. So, after another conference call with Dr. Cohen -- Bill was dispatched to Thousand Oaks to pick up prescriptions -- since the meds are opiates for pain, they cannot be called or faxed, etc. (It's not like he has a job or anything! and I keep thinking I'm too sick to deal with all of this!) Hopefully, I will get some pain relief and sleep tonight, and be able to hang in there until Wednesday -- "Oh, lovely and fun-filled day at UCLA!"
The younger kids got their schoolwork done and played with friends when they finished. Molly is excited because she's been invited to go to her friend, Amber's horseback riding lesson with her tomorrow. We'll get some info on it and see if it's something she may want to do!
Cameron had an early-out day and was done with school one hour earlier than usual. So, that seemed a bit odd. Other than that -- we just had dinner and rented "Cloudy with a Chance of Meatballs" for the kids to watch as it came out on PPV yesterday.
Much Love,
Michele
Tuesday, February 2, 2010
"TO GET THROUGH THE HARDEST JOURNEY..."
"WE NEED ONLY TAKE ONE STEP AT A TIME, BUT WE MUST KEEP ON STEPPING." -- CHINESE PROVERB
Hi Friends,
I know I've used this quote before, but once again I find myself in this place. Yesterday, I hid out in my bedroom, but today the heavy-duty meds have kicked in and the steroids are giving me energy. So, once again, I'm ready to fake it until I make it. I think I just needed some time to adjust to the most recent rounds of bad news from the doctors. But I'm OK again, and I need to trust God with my life and know that he will give me the grace needed to thrive in this storm.
So, I told Bill, "Let's be normal for the next 10 days until we meet with the doctors to schedule chemo!" Or, I guess -- as normal as we can be. I've always believed that normal is just a setting on your dryer :-) I sent him and Cam off to work and school this morning. And he is picking up Cameron after school each day and bringing him home to me. I'm not allowed to drive or do much fun stuff on the new meds. This morning, I took 19 pills for breakfast, and the kids helped me fill my med container for the week. I'm back up to almost 70 pills daily. Nate was upset for me, but I told him we should just be glad that there are meds to help me!
The homeschoolers and I had a good day. We got a lot of chores and schoolwork done. Right now, Nate and Isaac, and Molly are all playing at their friends' houses. Cameron is doing homework for sociology class -- he has to watch a TV show and document all the commercials and their target audiences. It's pretty funny! Especially, when they were advertising for a study for lack of sex drive in menopausal women. My poor, autistic 16 year old was mortified.
I'm drinking sparkling water like crazy, because the steroids make me so hungry. And tonight I'm determined to do some Wii Fit Yoga. Gotta love video game workouts! But at least it's something besides laying in a hospital bed.
Bill made chicken tortilla soup in the crock pot and it's bubbling away. He should be home around 6:30-7. The kids are all due at home at 6 p.m.
Life is good. God is great! I love you all!
Much Love,
Michele
Hi Friends,
I know I've used this quote before, but once again I find myself in this place. Yesterday, I hid out in my bedroom, but today the heavy-duty meds have kicked in and the steroids are giving me energy. So, once again, I'm ready to fake it until I make it. I think I just needed some time to adjust to the most recent rounds of bad news from the doctors. But I'm OK again, and I need to trust God with my life and know that he will give me the grace needed to thrive in this storm.
So, I told Bill, "Let's be normal for the next 10 days until we meet with the doctors to schedule chemo!" Or, I guess -- as normal as we can be. I've always believed that normal is just a setting on your dryer :-) I sent him and Cam off to work and school this morning. And he is picking up Cameron after school each day and bringing him home to me. I'm not allowed to drive or do much fun stuff on the new meds. This morning, I took 19 pills for breakfast, and the kids helped me fill my med container for the week. I'm back up to almost 70 pills daily. Nate was upset for me, but I told him we should just be glad that there are meds to help me!
The homeschoolers and I had a good day. We got a lot of chores and schoolwork done. Right now, Nate and Isaac, and Molly are all playing at their friends' houses. Cameron is doing homework for sociology class -- he has to watch a TV show and document all the commercials and their target audiences. It's pretty funny! Especially, when they were advertising for a study for lack of sex drive in menopausal women. My poor, autistic 16 year old was mortified.
I'm drinking sparkling water like crazy, because the steroids make me so hungry. And tonight I'm determined to do some Wii Fit Yoga. Gotta love video game workouts! But at least it's something besides laying in a hospital bed.
Bill made chicken tortilla soup in the crock pot and it's bubbling away. He should be home around 6:30-7. The kids are all due at home at 6 p.m.
Life is good. God is great! I love you all!
Much Love,
Michele
Monday, February 1, 2010
LUPUS STILL BITES :-(
Hi Friends!
I talked with Dr. Cohen this afternoon, and while I LOVE my doctor -- I'm hating the aftercare instructions and still thinking lupus bites! He wants me back up to 60 mg. of Prednisone daily -- if you've never been on steroids, just imagine a medicine that makes you puffy, hungry, crazy, and emotional. Can you say fun? I also need to start CellCept, which we've been talking about for a while. Patients with organ transplants take it to prevent organ rejection. It's also used in lupus patients like me to keep us from rejecting (or attacking) our own organs. I'll probably have to add back most of the meds I stopped, too -- due to the effects of the Prednisone.
We set up Home Health Care to keep my PICC line clean, and they will draw blood weekly. And, like I thought we'll try and wait to start chemo again until Feb. 10th when I see Dr. Karpouzas (chief rheumatologist at UCLA) and Dr. Cohen. Together they will make the new plan, Stan. But Dr. Cohen said it was a bad sign that my headache and chest pain came back after the hospital stay.
So, again -- it is what it is... Thanks for all the prayers!
Much Love,
Michele
I talked with Dr. Cohen this afternoon, and while I LOVE my doctor -- I'm hating the aftercare instructions and still thinking lupus bites! He wants me back up to 60 mg. of Prednisone daily -- if you've never been on steroids, just imagine a medicine that makes you puffy, hungry, crazy, and emotional. Can you say fun? I also need to start CellCept, which we've been talking about for a while. Patients with organ transplants take it to prevent organ rejection. It's also used in lupus patients like me to keep us from rejecting (or attacking) our own organs. I'll probably have to add back most of the meds I stopped, too -- due to the effects of the Prednisone.
We set up Home Health Care to keep my PICC line clean, and they will draw blood weekly. And, like I thought we'll try and wait to start chemo again until Feb. 10th when I see Dr. Karpouzas (chief rheumatologist at UCLA) and Dr. Cohen. Together they will make the new plan, Stan. But Dr. Cohen said it was a bad sign that my headache and chest pain came back after the hospital stay.
So, again -- it is what it is... Thanks for all the prayers!
Much Love,
Michele
FIRST DAY AT HOME !!!
Hi Friends!
After getting home from the hospital yesterday, I hugged my kids and went to sleep for a very long time in my own bed. I had probably only slept a total of 4 hours in the 3 days/nights spent at Los Robles! The steroids make you hyper, but in a bad way! So, I slept until 1o p.m. when Bill woke me up for meds. And I ate a bunch of food. Again, you have to love the steroid hunger, too! So, after a healthy nighttime snack of chocolate cereal and nachos, I went back to bed. Isaac missed me a lot, and soon he was sleeping in the bed between Bill and me.
I didn't hear a thing all night until Cameron (our responsible high-schooler) arrived in our bedroom at 7:15 this morning to tell Bill it was time to take him to school. Bill took the day off of work to care for me, and he is currently homeschooling Molly, Nate, and Isaac. I am taking the day off and hiding in my dark room, waiting for aftercare instructions from Dr. Cohen.
To be honest, I felt a lot better in the hospital. It was probably just the pain meds and steroids making me high -- I guess. Today my chest and head are killing me again! It is what it is! I feel blessed to have a supportive group of friends and family to get me through this, but it does get tiresome! Sometimes I just want to be the old me again!
So far, this is what I know -- I need to have a port put in surgically, and I need to schedule the next two rounds of Rituxan. I was supposed to do 2 rounds every 6 months for the next 2 years, but unfortunately the last rounds only lasted 3-4 months. (I have no idea why the font just changed -- but I'm too tired to deal with it!)
On a funny note (kind of!), my children wonder how long I will live with all of these health problems. Isaac asked me if I could live until he's "an old man," because he'll need me until then. In further discussion, he clarified that he needs me until he's 30 years old -- so here's hoping that I can keep these organs workable for at least 23 more years!
Going back to sleep...
Much Love,
Michele
After getting home from the hospital yesterday, I hugged my kids and went to sleep for a very long time in my own bed. I had probably only slept a total of 4 hours in the 3 days/nights spent at Los Robles! The steroids make you hyper, but in a bad way! So, I slept until 1o p.m. when Bill woke me up for meds. And I ate a bunch of food. Again, you have to love the steroid hunger, too! So, after a healthy nighttime snack of chocolate cereal and nachos, I went back to bed. Isaac missed me a lot, and soon he was sleeping in the bed between Bill and me.
I didn't hear a thing all night until Cameron (our responsible high-schooler) arrived in our bedroom at 7:15 this morning to tell Bill it was time to take him to school. Bill took the day off of work to care for me, and he is currently homeschooling Molly, Nate, and Isaac. I am taking the day off and hiding in my dark room, waiting for aftercare instructions from Dr. Cohen.
To be honest, I felt a lot better in the hospital. It was probably just the pain meds and steroids making me high -- I guess. Today my chest and head are killing me again! It is what it is! I feel blessed to have a supportive group of friends and family to get me through this, but it does get tiresome! Sometimes I just want to be the old me again!
So far, this is what I know -- I need to have a port put in surgically, and I need to schedule the next two rounds of Rituxan. I was supposed to do 2 rounds every 6 months for the next 2 years, but unfortunately the last rounds only lasted 3-4 months. (I have no idea why the font just changed -- but I'm too tired to deal with it!)
On a funny note (kind of!), my children wonder how long I will live with all of these health problems. Isaac asked me if I could live until he's "an old man," because he'll need me until then. In further discussion, he clarified that he needs me until he's 30 years old -- so here's hoping that I can keep these organs workable for at least 23 more years!
Going back to sleep...
Much Love,
Michele
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