ISAAC PLAYS SUPERMAN!!!

Hi Friends!

Sorry, I haven't blogged for a while. I've been busy nursing Isaac back to health. On Sunday night, he was playing in his bed -- the top bunk of bunk beds he shares with Cam. He ended up falling out of his bed, and he landed with both of his hands bent backwards at the wrist. One is sprained and one is broken. So, he's needing a lot of assistance with his daily activities. And Bill has a major ear infection. When he went in to the doctor yesterday, they gave him antibiotics and a dose of steroids. After his dose of steroids, he was up until 4 a.m. So, he now has a new understanding for what steroids are like. Besides that I have a kidney infection going, so we're really a sorry bunch!

Other than that, we haven't been up to much. On Sunday we went to see Despereaux at the movie theater, and then we ate dinner at McDonald's. Since all the injuries, we have been just hanging around home. I have managed to start walking again with Judi. And Bill has been in to work yesterday and today.

I'll try to write more tomorrow on New Year's Eve.

Much Love,

Michele

THE DAY AFTER CHRISTMAS!!!

Hi Friends!

I am reading a book called Hope, Faith, and Healing right now. I got it for Christmas from Santa and it's about how your outlook can help you fight disease. I want to share something I read in it today. It's come to be known as the Prayer of an Unknown Confederate Soldier.

I asked God for strength that I might achieve;

I was made weak that I might learn to obey.

I asked for health that I might do great things;

I was given infirmity, that I might do better things.

I asked for riches that I might be happy;

I was given poverty that I might be wise.

I asked for power that I might have the praise of men;

I was given weakness that I might feel the need of God.

I asked for all things that I might enjoy life;

I was given life that I might enjoy all things.

I got nothing that I had asked for,

but everything that I had hoped for.

Almost despite myself my unspoken prayers were answered;

I am, among all men, most richly blessed.

Pretty powerful and holy words! They sure hit home for me.

Well, today after doing chores and getting ready, which took almost all morning for all 6 of us -- we decided to have a fun little family outing. We had a big lunch at Hometown Buffet here in Simi Valley. I definitely got my money's worth on Cameron alone. It's amazing how much that skinny boy can eat. But then, he's always growing and very active!

After eating our lunch, we drove over to Porter Ranch to go to Toys 'R Us. The kids had a bunch of Christmas and allowance money that they wanted to spend. It was pretty crazy shopping the day after Christmas. Thank goodness for my handicapped parking placard! Bill took the 2 little boys shopping, and I took Cameron and Molly shopping. I probably got the better deal, but then I am still sick.

Shopping went pretty well, and this is what they bought. Cameron bought all 6 Star Wars movies on DVD and a large dinosaur. Molly bought a Hannah Montana stage, 4 Hannah Montana character Barbie dolls, and a black lab stuffed dog named Jack. Nate bought a remote control tarantula and 2 PS2 games. Isaac bought night vision goggles and a Nerf gun. We also picked up 2 new movies --Meet the Robinsons and Narnia's Prince Caspian. And the boys got light saber-shaped styluses for their Game Boys. You have to love boys versus girls. The boys had all lost their numerous styluses, and Molly hadn't lost any of hers. So, she was nicely sharing, but the boys looked rather silly using pink ones.

After returning home, I took to my bed for a while. The trip, while fun, also exhausted me. The kids were all happy to play with their new things. And Cameron has started a Star Wars marathon. He is now on the 2nd movie, and Bill and the other kids have joined him and are eating popcorn. I figure I won't see Cameron for days with all these new movies in the house. But at least he has something different to watch. He still has the tendency (typical for autistic people) to watch the same movie over and over.

I am going to join my family for the movie now. I'll write more tomorrow.

Much Love,

Michele

CELEBRATING JESUS' BIRTH!

But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord."

--Luke 2: 10-11

Hi Friends!

I hope you are all having a wonderful day as we celebrate the ultimate gift of Jesus Christ, our Savior! We are having a nice quiet family day at home --or at least, as quiet as it gets with four kids on Christmas.

Last night after church at 7 p.m., we put the younger kids (Nate and Isaac) to bed. Then the older kids got to play Santa's elves and put the presents under the tree. They had a great time especially after they discovered the "giggle balls" from Grandpa John and Grandma Linda. It's surprising they didn't wake the little ones up, but luckily for us -- they're hard sleepers!

This morning Molly (our early riser) woke up at 6 a.m. At least she decided to wait until 7 a.m. to wake the other kids up. But it was still rather early for us, and Isaac was a tad crabby. We opened gifts in a frenzied manner as kids do. Molly's favorite gift was a foozball table. There was a string leading the kids to it from the Christmas tree. It was funny, because it led all over the house before its ultimate end outside.

Cameron's favorite gifts were movies. Among others he got Kung Fu Panda, Alvin and the Chipmunks, and several Veggie Tales movies. And we all know how much Cameron likes to watch TV!

Nate and Isaac both say their best gifts were the cash they got from me and Bill. I guess you can't go wrong with cold, hard cash! They are already making big plans in regards to how to spend it!

Bill got a bunch of his childhood pictures from his Mom and Dad. That was his favorite gift!

My favorite gifts were also from Bill parents, most especially the beautiful beaded cross necklaces and a garden stone in the shape of a cross -- it has the Bible verse: "We walk by faith, not by sight." 2 Cor. 5:7 How true that is!

After the frenzied gift opening, Bill and I managed to take a 3 hour nap while the kids destroyed the house. Just kidding, but when I got up, it basically looked like Christmas had puked in our living room. I love kids -- really, I do!!! Although, Cameron being his usual organized and autistic self had already sorted and put away all his gifts and was busy watching movies.

Since we got up at noon, we have all been just hanging out playing around with the Christmas stuff. I basically just bought trinkets from the dollar store, but they've been a big hit! Bill, Nate, Isaac, and Molly had some spirited games of foozball! They even made me play. I'm horrible (mostly due to my nervous system problems and lack of hand-eye coordination), but it was fun!

We're getting ready to do our Christmas dinner. Terri has provided the ham. It looks lovely and colorful with pinaeapples and cherries on it. I'm making corn muffins, rice, potatoes, and peas to go with it. Bill also picked up a Boston cream pie for desserts. And of course -- we have some cookies left over from the batch we baked for Santa yesterday. So, we're not lacking for desserts!

Nate and Isaac are outside riding their new bikes (courtesy of our church deacons), and Cam and Molly are inside watching TV and hanging out. I think they're dragging a little bit after the early start this morning.

I hope that you are all having a wonderful day with your family! I am feeling very good -- I even have a new headache medicine that appears to be working. Slow down and enjoy what really matters. I'm hard-headed, so God had to give me a life-threatening illness in order to get me to do that. Hopefully, you're not as stubborn as me and you can learn vicariously through my experience!

I hope you enjoy the photos I'm posting today. They were taken Christmas Eve before we went to church. Thanks to Annie for the family Christmas socks. Unfortunately, Bill wasn't wearing his, which is why he is absent from that picture.

Much Love,

Michele

REFLECTIONS ON 2008!

Hi Friends!

Merry Christmas Eve! This is the video that Bill made of me for the year of 2008. When I first saw it, I cried. Bill did, too. It was just so dramatic to see how much the lupus, steroids, and chemo have changed my appearance. But as hard as this year has been, I wouldn't change it. As always, I have faith that God knows better than I do. This isn't the path I would have chosen for myself. I wouldn't have had the wisdom to do so. At times it seems too hard, but if you never climb the mountain -- you won't have your breath taken away by the beauty of the view on top of it. I've grown as a person, child of God, Mom, wife, and friend this year. I'll never be the same as I was before, and as the year ends -- I want to thank God for being more concerned about my character than my comfort. I also want to thank Him for all of you reading this. Without your love and consistent prayer support, I wouldn't have made it this far.

I just finished ordering our pizza from Pizza Hut. It'll be coming at 4 p.m. I love internet ordering. Shirlene just dropped off Brandon and the boys. Nate and Isaac spent the night there in Palmdale last night. Isaac came back minus one front tooth. And the other one is hanging by a thread! He looks pretty cute!

I did manage to finish wrapping presents last night after the boys left. Cameron and Bill had Boy Scouts last night. So, Molly and I had a quiet girl's night. After wrapping the presents, we watched a movie. Then I took my Ambien and went to bed. I told Molly she was in charge, and that she shouldn't let me leave the house.

Today we will go to church, the Christmas House, and the kids will Christmas shop for each other. I love you all!

Happy Holidays!

Michele

TERRIFIC TUESDAY!

Hi Friends!

It's the eve of Christmas Eve and I'm feeling better today. I started the day with an appointment at 8:30 with my main doctor (the rheumatologist), Dr. Cohen. I feel really blessed that God led me to such a caring and knowledgeable doctor. Bill came along with me, because Dr. Cohen had especially requested he come along so that we could discuss "the course of my disease." Well, it sounded ominous, but we actually got some good news!

Dr. Cohen is impressed with my recovery, and both he and Bill have to keep reminding me of how far I have come. We discussed the course of my CNS Lupus as well as the treatment course and side effects of treating it with Cytoxan (the chemo I'm currently on). There are four things I need to watch for. The first is osteoporosis. I'm already taking preventative drugs for it as it's a side effect of the high dose steroids, and I have a family history of it. My mom has it as did other relatives. So, I'm getting a bone scan soon to determine my bone density and we'll go from there.

The second thing to watch for is heart disease and infections, which tend to happen with this disease. I've already had a full heart work-up, and so far -- so good! Dr. Cohen is doing more bloodwork and we'll keep a close eye on it.

The third thing is cancers, especially bladder, kidney, and breast. So, I will be screened for those starting now. These are side effects of the Cytoxan, but I'm also more at risk for cancer due to having an auto-immune disorder.

Fourth, as we all know -- being on the Cytoxan puts me at high risk for all infections. Basically, that is killing my over-active immune system (which was killing my brain, organs, and subsequently me!). Bu that, unfortunately, leaves me at high-risk and unable to fight routine infections which could be deadly. Currently, I have infections of my skin and mouth. And I often struggle with kidney infections. I'm also anemic from the Cytoxan and am currently having my platelets checked, because when I bleed, I don't stop!

So, my doctor wants to balance the benefits versus risks of treating me with Cytoxan, and therefore -- treat me with as few doses as necessary to reach the best outcome. The good news for me is that I'm on my 4th round of chemo, and if I show continual improvement -- I may be able to stop after the 6th round in February. I am cautiously hopeful! I don't want to get too excited. But it would be great if they could manage the lupus with oral medication after February. I was feeling really depressed about doing chemo until September, so it would be great not to have to do it. But I will let Bill and Dr. Cohen make that decision as at this point, they are more objective than I am. I am just in it too deep right now! We're supposed to keep a symptom log for the next month to help us decide.

We got home from the doctor's appointment around 11 a.m. That's another thing I like about my doctor -- he'll spend a lot of time talking everything over with us! You never feel rushed, although it's funny, because he again told me I'm his most "complicated case." We were thrilled upon arriving home, because the house was still in one piece with Cameron, Brandon, Molly, Nate, and Isaac all left home alone. And there weren't even any fights to report!

Bill is home again today, and the two of us are puttering around the house doing our own things. The kids are content to be off of school. Nate, Isaac, and Brandon have been building and "upgrading" a ramp outside. They are launching themselves on skateboards, scooters, and bikes off of it. Boys will be boys! They've only had 2 injuries so far, though, and only one has involved blood and required a band-aid. So, we're doing pretty well! I may, in fact, be the only injury to report as I am already sunburned due to be called outside to see all their "tricks." For those of you unfamiliar with lupus -- sun is a big no-no! I wear SPF 70 and a hat and cover up. But I still get sunburned and have symptom-flares when outside for any amount of time. It kind of takes the fun out of living in Southern CA. I like the sun, but the sun doesn't like me. I can't even pick the kids up from school without getting sunburned!

I am going to attempt to wrap the last of my Christmas presents today. We were given a bunch of gift cards from the deacons at our church, so I went out and picked up some stuff for the kids. However, I am at the moment "grounded" by my adoring and sweet husband, so I won't be attempting any more outings for awhile. He's probably right, because whenever I am feeling good, I have a tendency to go out and try to do too much. According to him, I need to conserve energy and try to let my body heal.

Tomorrow on Christmas Eve we will go to church, and we always go to the "Christmas House" here in Simi Valley afterwards. It's also a Bland family tradition to order pizza and for the kids to shop for and wrap presents for each other on Christmas Eve. Then on Christmas morning we open our gifts. Terri, my nice neighbor, is providing our ham dinner for Christmas. Yes, she's the same neighbor who made our Thanksgiving feast!

I will try and write more tomorrow.
Happy Holidays and Much Love!
Michele

P.S. --Bill is still working on our "annual Bland family year in review" Christmas CDs. We hope to have them out by New Years! Cut us a little slack due to the circumstances, please!

MONDAY, MONDAY ...

Hi Friends!

Sorry, it's been awhile since I last blogged. I am slowly recovering from my 4th round of chemo. I feel OK, but I have been struggling again with headaches. Also, I am feeling somewhat depressed because the road ahead of me seems so long. Bill was working on our Christmas slide show last night, and it was rather sad to see how much I've physically changed over the year.

The kids are off of school this week and next for Christmas. Bill is staying home to help this week as I'm not ready to take over all the Mom duties yet. I will attempt to do some laundry and other stuff today, though.

Here's hoping that the week gets better and I catch the Christmas spirit again. I do have a few Christmas presents left to wrap for the kids. Maybe!

Much Love,
Michele

FINALLY FEELING THE CHRISTMAS SPIRIT!!!

Hi Friends!

Well, better late than never! I am finally starting to feel like it's Christmas. Sorry, I haven't written for a while. I've spent the week recovering from chemo. It was definitely better to only do the one day of chemo without the IV steroids. I just hope the lupus symptoms stay away, so that I can continue this course of treatment. Although the steroids can be fun, what with the slanty floors and slurred speech -- when you crash, you really crash and burn!

On a good note -- without the steroids to make me obsessively clean, I have resisted the urge to clean my house. I've let Bill and the kids trash it. By yesterday, I was ready for an outing though ~ so Annie and I did some Christmas shopping. We went to Kohl's and the 99 cents store. We are giving our kids money this year, but I wanted to pick up a few things from Santa to put under the tree. I might have gotten a bit carried away, but it was fun -- and a few hundred dollars later we came home, and we spent hours wrapping it all up. We eventually ran out of wrapping paper, but not to worry -- we finished today!

Today was the last day of school for the kids before Christmas Break. Isaac and Nate got done at noon, and they both had Christmas parties at Grace Brethren. I was feeling up to going, so Judi took me to their parties, and we spent the morning there. Brandon had the day off of school due to snow in Palmdale, so he came over for the day. The boys spent the afternoon playing with Brandon. The highlight of their day was when Bill came home, and they all spray-painted their skateboards with glow-in-the-dark spray-paint. Shirlene took Nate and Isaac to Palmdale to spend the night after she finished with work. So, hopefully right now Brandon, Nate, and Isaac are having fun playing in the snow!

Molly and Cameron had school until the regular time -- 3 p.m., and Bill picked them both up (but separately) on his motorcycle. Molly was thrilled because Chris (the boy she likes) saw her on the motorcycle. Now, the older kids are both enjoying a quiet evening without their younger siblings!

We continue to be well cared for by our church family! Dinner has been provided for us all week. We also received a bunch of groceries today from the deacons, and a "gift card tree" was delivered to us by our favorite deacon, Skip! It was a small Christmas tree with quite a few gift cards on it. I am always blown away by how much God cares for us!

Judi took pictures of me with the boys at school today. So, I'll try to get those from her soon and post them on this blog. I am going to sign off for now.

Much Love,
Michele

Keep on Trekkin'!

Greetings to all my viewers, family, friends, chemo buddies and all!

Well, had Chemo #4 yesterday - the first without the high dosage steroids - Wow!
I must say it's more enjoyable with the steroids - go figure. With the steroids I feel
a little "high" which makes the chemo easier to handle. Without them, I feel more "down and yucky" vs down and out. (ha ha)

Annie took me to The Hat for lunch after chemo. I was able to enjoy my grilled cheese sandwich before the nausea set in. When we got home I took my anti -nausea meds and spent
time resting in bed with the occasional nap. Life went on downstairs with one of the kids coming up to visit at different times.

Today I am feeling okay but sick to my stomach, so I am taking it easy and taking the meds as directed for the nausea. Getting a little tired so I'll close for now. Depending on how I feel later, I might add more for today's blog.

Much Love,

Michele

SUNDAY BEFORE CHEMO!

Hi Friends!

Let me start out with sad news -- I've discovered I'm allergic to chocolate. Bill has been reading up on lupus, and he discovered that people with lupus often develop food allergies. So, he asked me to keep track of what I was eating to see if there was a pattern with my headaches. Well, today I made brownies for the kids' teachers as Christmas presents. After taste-testing the brownies, I developed a horrible headache -- so it's pretty obvious what one of my allergies is. Most of you know that I love chocolate - so I was awfully sad. When I told my kids, they all gasped in shock!

Other than that -- we've had a quiet day of rest. We went to church this morning, and we took Bill's friend Scott along. After coming home, I took a nap. Then we did the brownies, and watched a bunch of movies for a family Christmas movie marathon.

I'm feeling better about doing chemo tomorrow -- not quite so depressed. Shirlene and Annie are going with me, so we should have a fun chemo party.

I'll let you know how it goes tomorrow. If I can't e-mail -- I'll have Bill or Annie do it. Bill is going to do less hours at work this week. He'll just go while the kids are at school. That way he can drop them off and pick them up each day. And Annie will be staying with us for the week as she usually does. I'm a blessed person to have so much help! We will also have meals brought to us all week by friends from the neighborhood and church.

Much Love,

Michele

Saturday Before Chemo!

Hi Friends!

It's the Saturday before my 4th round of chemo. I am doing it on Monday. I think my house is fairly clean and the laundry is done. I'm going grocery shopping today, and then I should be prepared for being down and out of it for about a week. I'm hoping to spring back to life (like Frosty the Snowman) by Christmas Eve. We're going to focus on what really matters for Christmas this year -- and it's not presents. I'm not buying or doing anything this year in that regard, so please accept my apologies if you were expecting something from me. I am going to give my own kids money, and then after Christmas we will take them on a special excursion to spend it on what they'd like. I simply don't have any energy for anything except healing myself this year.

I am posting a few pictures of the kids on the blog today. They are excited because they are going to decorate the house for Christmas this weekend. They have been saying, "Everyone has their Christmas decorations up except for us!" for weeks now.

Much Love,

Michele

WATCH OUT, I'M BACK!

Hi Friends!

I'm feeling better. I think I've finally beat the flu, and I am close to "normal" again. So, I should have a few good days of nesting before chemo on Monday. I always feel the need to clean, do laundry, and buy groceries like crazy before my monthly treatment. I think it makes me feel like I have everything in oder before being down for a week or so.

Shirlene cut my hair again today. It's funny because it's growing in some places while it falls out in others. She said it's much thinner, but as long as I have any hair she'll try to keep it looking nice. She's such a good friend! I seem to have more hair on one side than the other, so we were joking about doing a Donald-Trump-type comb-over.

I'm going to post a few pictures from Isaac's Christmas performance. Since I haven't posted for a while, I have a lot of older pictures that I haven't put on my blog yet.

More tomorrow...

Much Love,

Michele

FEELING YUCKY!

Hi... this is going to be short, but I just wanted to let you know why I didn't post yesterday or today. I seem to have the flu, and I am feeling very sick. I'm just laying around in bed trying to recover. It started yesterday afternoon with vomiting and diarrhea. No fever, so that is good -- means that it's not a super-bad infection. Bill was sick a few days ago -- so I probably caught it from him, and I will have a hard time kicking it due to my weakened immune system. So, if you're reading this -- please pray that I get better soon and have a few days of health before doing my chemo on Monday.
Much Love,
Michele

SLEEP-OVER SATURDAY/SLEEPY SUNDAY

Hi Friends!

I didn't write anything yesterday, so now I'll try to catch you up on the weekend. I'm starting to feel a bit "odd" again -- the lupus symptoms tend to come back when it's close to chemo time again. My next chemo is scheduled for the 15th.

On Saturday Bill took the boys on a Boy Scout camping trip to California City. They left in the afternoon. Molly invited some girlfriends over for a sleep-over on Saturday night. She ended up with 3 girls from school plus little Heather from next door. Annie came to help me supervise the girls, which turned out to be a good thing. Apparently my cognitive function is not quite back, because Bill had set my P.M. and bedtime medicine out for me before he left -- but I accidentally took my Ambien (the new sleeping pill) at 5 p.m. -- an hour before the girls were scheduled to arrive. I realized it too late, and I managed to call Annie to tell her we had a "BigGulp emergency." She showed up shortly with our daily Big Gulps and movies from BlockBuster for the girls to watch. That was helpful, and I made it until 10 p.m. when I fell asleep with my head on the dining room table. The girls had a great time, giggled, did make-overs and "girlie things," and talked a lot, and stayed up until after 4 a.m.! It's all a blur to me, which may be a good thing, but thank goodness Annie was here to supervise.

This morning we woke up at 8:30, and the girls were already up. We had donuts and they played games, painted nails, and rode a Hannah Montana beanbag down the stairs. The girls got picked up at 11 a.m., and Annie, Molly, and I went out for a girls' lunch at Chiles. We had a nice time. (Thanks, Annie!) Then, we came home, sat, and just enjoyed the quiet! Annie is having some health problems, too (Prayers would be appreciated.) -- So neither of us was feeling that great,

This afternoon Molly and I watched "The Bucket List" and the boys came home around 6 p.m. They had a good time riding their dirtbikes and go-kart and doing "boy things." Bill got the truck unloaded and we spent the evening cleaning them up and winding down from the weekend. I'll try to post pictures of the weekend later this week. But for now -- I'm off to bed so that I'm ready for the week.

Much Love,
Michele

FREAKY FRIDAY!!!

Hi Friends!

Well, what else could I name it?! This will be short as I'm not feeling well. I had my lupus headache, and in order to kick it -- I needed to take my Vicodin. So, now that's better but I'm tired. And I am also feeling sick to my stomach today. Hopefully, it's just a bad day and will pass by tomorrow. Tomorrow Bill is taking the boys on a camping/riding overnight, and Molly and I are staying home so that Molly can host a slumber party. I'll need to be in good shape to handle a bunch of giggling girls.

Other than that -- it's been a pretty typical Friday. Everyone had a good day at school. Nate's class went on a field trip to sing at a retirement home, and he seemed to enjoy it. Cameron and Molly are both having issues with bullying at school. Doesn't everyone in junior high and high school? But your prayers for them would be appreciated. Today they both had uneventful days, which was good. And seeing that it's Friday, everyone had minimal homework. That was also good since I'm not feeling well.

Bill had to stop at Wal-Mart for meds on the way home from work, so he hasn't arrived yet, Annie is over helping, and she is watching Ghostbusters with Cameron and Isaac. Cameron is thrilled to have someone new to watch it with as it's his current favorite movie, meaning he watches it repeatedly. Molly is upstairs watching Hannah Montana. And Nate went to spend the night at Brandon's house. Shirlene picked him up after work this afternoon. I'm going to turn in for the night, and I will hope to feel better tomorrow.

Much Love,
Michele

THINKING THURSDAY!!!

Hi Friends!

It's been a busy day and my head is spinning from all the thinking. Plus it was the only "th"word I could think of except "therapeutic," which is too medical. I'm trying to keep with the theme ... You know ... Manic Monday, Tornado Tuesday, Wacky Wednesday, and Thinking Thursday! Tune in tomorrow to see what Friday will be.

After sending all the kids off to school, Judi and I went walking. Then I spent the "school day" cleaning my house -- it doesn't sound busy, but it was. After picking up the kids and doing the regular homework that they all had, Nate and I worked on his President's report and managed to finish it. But it took us until dinner to do so.

We had dinner and I experimented with a Mexican theme -- chicken tortilla soup, enchilada casserole, and spanish rice. It went over fairly well. Somehow, between dinner and homework and bedtime and making luches for tomorrow and laundry ... I find it's 11 p.m. and time to take my Ambien.

Yesterday I took it at 8:30 p.m., and I thought I would go to bed when I got tired. The only problem is I apparently stayed up until 10:30, and did laundry, watched TV, talked to Bill, etc. I have no memory of doing any of that. It's apparently a great drug, because I can now do laundry and other mundane tasks while sleeping. Just kidding! But tonight I will take it and go directly to bed.

Tune in tomorrow for Friday's news.

Much Love,

Michele

P.S. -- The picture's not from today. It was a few weeks ago at Del Taco with Annie. Since then, I've actually lost 13 lbs and counting with the reduced steroids.

WACKY WEDNESDAY!!!

Hi Friends!

I'll start with my funny story of Ambien, which is the sleeping pill I told you about yesterday. I took it for the first time last night, and I told Bill about it. I wanted him to keep an eye on me since it comes with warnings saying " there have been reports of people sleep -walking, sleep -driving, and sleep -eating with amnesia of the event." Well, luckily I didn't do any of those things! I went to bed at 10:30 and fell right asleep. Praise God! Bill came to bed at 11:30, and he said I had a conversation with him about how I had been laying there for hours, but not sleeping. I have no memory of it, so apparently I talk in my sleep about not being able to sleep. I seriously must have sleep on the brain! But, seriously I did feel much better after a full night's sleep. I was still a bit groggy in the morning, however, and I had to go back to bed after sending the kids off to school. So, I'll try taking it and going to bed a bit earlier tonight.

After going back to sleep for a few hours, Judi and I did our usual walk. Then I came home and showered and got ready to meet the day. There is so much hair falling out when I wash it -- I can't believe I have any left. I thought I was looking really fine with my scarf today until Bill came home and called me "Aunt Jemima." Considering that the guys at work made fun of him for his orange motorcycle safety vest (even though it says Harley, it definitely doesn't look cool!), I figured he was just boosting his own self-esteem.

I spent the afternoon cleaning the house, and then before I knew it -- it was time to pick up the boys. Annie went with me and we picked up Cameron, Nate, and Isaac. Then she went to get us our daily Double Big Gulps from 7-11. (Last time I was in the hospital, I asked Bill if the 7-11 went out of business without me.) Molly stayed after school for CheerClub because there was a soccer game they were cheering for. Annie picked her up at 4:30.

Most of the kids had a lot of homework today, so we spent quite a bit of time on that. We just did instant stuff for dinner, because on Wednesdays Bill goes to a Men's Group with some other guys from our church. It's from 7-9 p.m.

Nate and Isaac built an elaborate "tent club" out of blankets, and they are sleeping in it tonight. At least, they're supposed to be sleeping. Right now, I hear a lot of giggling and talking. But, it's nice to see them getting along so well. And Cameron was so happy that they built the tent in Nate's room and Isaac would be sleeping there. That's because Cameron and Isaac are roommates, and well- you know how little brothers can be. Cameron was so excited about getting rid of Isaac that he hugged Nate. And Cameron is not a hugger!

I continue to feel REALLY GOOD. I am definitely convinced that the treatment is working. Of course, I will never go back to how I was before lupus -- but if it stays like this for even a little while, it is a blessing! Annie and I were talking today about how much I appreciate just being able to go and get the kids from school each day. If I had never gotten so sick, it might have been just a routine part of my day that I took for granted. Now, it's a part of my day that I treasure!

Well, I need to go off to bed. I took my Ambien and I am starting to get sleepy. I hope I'm not

sleep-typing this blog. Just kidding!

Much Love,

Michele

TORNADO TUESDAY!!

Hi Friends!

I saw my main doctor -- Dr. Cohen, a rheumatologist -- today and I have great news! I am doing so well that my next 9 treatments will only be chemo (Cytoxan). I won't need to do the high - dose IV steroids anymore unless I have a recurrence of the lupus symptoms. I am thrilled, because 3000 grams of Solumedrol monthly makes you crazy and fat. And I get to taper off my oral Prednisone (steroid pill ) -- the one I hate because it gives you "moon face" and makes you puffy, but I've learned to love after it helped in my cure. At worst, I was taking 60 mg per day, and now I'm down to 10 mg. We have to taper completely off slowly -- 1 mg at a time or all the bad stuff could come back. So, it will take about 8 months to get me completely off Prednisone. But already, I see the lower dosage is nice as I've lost 11 pounds. I'm also off several more of my meds and now down to taking only 10 meds + all the vitamins and supplements my doctor has recommended. Anyway, Dr. Cohen was very pleased that I'm doing so well. And I'll go back and see him in 3 more weeks. He's asked me to bring Bill along so that we can discuss the typical course of this disease. For example, it usually attacks your heart -- so we need to be very proactive and try to stay one step ahead of this crazy thing.

So Praise God and Thank you for all the prayers. If you're praying for me right now -- I'm trying two new meds, ambien cr for insomnia (side effect of some of the other meds), and a new one for my mouth. My immune system even attacks my own mouth, so I've been dealing with a fungal infection there that won't go away for months. It's a little thing, but it is driving me crazy.

The doctor's appointment was at 9:30 this morning in Thousand Oaks, so Annie and I went after taking Nate and Isaac to school. After the appointment and getting prescriptions filled there, it was close to 11 a.m. We went and had lunch at SubContractor's -- very good and a whole vegetarian menu, so I loved it! Then we were off to Wal-Mart and on several other errands, which ended up taking the rest of the afternoon.

We got to my house and unpacked our stuff. Then it was time to pick up kids. I went to get Nate, Isaac, and Cam, and Annie went to get Molly and took her to her orthodontist appointment. We got home around 3:30 and had until 5 to get chores, homework, etc. done and be ready to go to Isaac's Christmas Program for school. So, it was a bit of chaos!

The Christmas Program was at Grace Brethren Church, and was for the K-1,K-2, and 1st grade classes. It was really cute. Annie came, and Judi came with her family. The program was very touching, and all 3 of us were crying. Isaac looked very cute in dress slacks and shirt with a tie!
We took video that we can share and lots of pictures that I'll post later -- because they're on Annie and Judi's camera.

After that Bill and Cam had to go to Scouts. Annie and I brought the other kids home and we fed them quick instant dinners because it was getting late. They're now all in bed, and I took my first ambien pill, so I'm thinking sleepy thoughts. I'll sign off now.

Much Love,
Michele

JUST ANOTHER MANIC MONDAY!!!

Hi Friends!

We all survived our first day back to school and with Bill back at work. It went well, but the kids and I had a hard time waking up so early after sleeping in over Thanksgiving Break. Bill had early morning meetings, so I drove the kids to school. (except Molly -- the Malone's always take her and Justin) Isaac did great, and didn't even cry about

going back to kindergarten. He had tried to say he "was sick" at home before leaving, so I wasn't sure how well it was going to go.

It is a big milestone for me to be back to driving again -- I am now dropping off and picking up my own children again. And, I am able to run errands and have a sense of independence again. Freedom is exciting at this point for me!

Other than that, I spent the day doing household and kid stuff. Judi and I managed our usual morning walk. Von's delivered groceries and I unpacked them. I feel back to normal again, but also today, like I ran a marathon. Luckily for me, Annie showed up with a Double Big Gulp for me and was extra homework help after school. If she hadn't -- I may have collapsed. I'm off to bathe and bed as I have an early morning doctor's appointment.

Much Love,

Michele

P.S. -- I'm dedicating today's blog to Judi, Annie, and Shirlene -- the 3 best "chemo buddies," a girl with lupus could have. They truly would do anything and have dropped everything to help me during this time. And also to Heather -- my littlest hospital visitor and friend. She's Judi's daughter, and Judi says I have to stop being so nice to her, because now Heather is saying she wants "Michele to be my Mommy."

A DAY OF REST!

Hi Friends!

I had a nice and quiet day today. I made it back to church, and for the first time in a long time -- I was able to stand at appropriate times during the service. For the past several months when I have made it to church -- I've not had the strength to stand and have stayed seated the whole time. This whole "life-threatening illness-thing" really makes you appreciate the small stuff.

After church we spent a quiet afternoon at home. The kids played and we watched a couple movies on TV -- Juno with the older kids and Elf with all of the kids. I concocted a new casserole out of left-over Thanksgiving foods, and it was a hit whith all the kids except Isaac. 3 out of 4 isn't too bad!

Tomorrow all of the kids go back to school. Most of them are less than thrilled! It's been fun having them home, but I'll also be glad to get back to our normal weekly routine. I have two full weeks before doing my December (#4) steroid/chemo treatment. So, I'm hoping for 2 nice weeks. I am still feeling much better, although today I am struggling with the headache again.

Much Love,
Michele

ANOTHER GOOD DAY!! 11/29/08

Hi Friends!

I am having another good day. I am enjoying a symptom-free day from lupus and I'm loving it! I am excited because tomorrow I will get back to church after missing the last 2 weekends due to chemo and its side effects.

Today, I slept until 10:30. The kids and Bill got up earlier and we had a lazy morning. Then at about noon, Nate and I went on a special outing. He has a President's project due for Social Studies and he wanted to do it on Ronald Reagan. Since the Ronald Reagan Presidential Library is here in Simi Valley, it made sense to go and do our research there.

We left at noon and stopped at Carl's Jr. for lunch. Nate is a big fan of the Double Western Cheeseburger and chili fries. And he can pack it away for someone so small! We had a nice lunch together and spent some time just talking.

Then we headed to the Library. Thank goodness for my handicapped placard, because the place was packed and they were shuttling people in on vans! But I was able to get a handicapped spot close to the entrance. And Nate and I spent several hours in the library doing his research. Then we drove back to Carl's Jr, got milkshakes, and spent the next hour there doing his rough draft, which is due on Monday. It was nice because there were no other kids there to distract him, and he worked really hard. I was proud of him!

We got back home around 5 p.m. Bill is at the "motorcycle store," according to the kids. For those of you who don't know -- he has a Harley. Molly said that she, Isaac, and Dad biked to Sycamore Park and played there while we were gone. So, sounds like they had a fun day, too! And Cameron said he "enjoyed the time alone."

Now, we're going to eat dinner -- some Thanksgiving left-overs. And then, we'll watch Ghostbusters 2.

Have a great night!
Much Love,
Michele

I FEEL GOOD! NOV. 28, 2008

Hi Friends!

I am having a great day! The kind of day where I don't even feel like I have lupus. On days like today, I am loving the chemo and what it is doing for me.

.................................................Before Chemo.................................................................After Chemo.........

We had a lazy morning and slept in .. at least Bill and I did. And Cameron, because he's a teenager. The other kids all got up early, but entertained themselves and fed themselves donuts for breakfast. Bill and I got up around 11:30 a.m. And then, I was feeling so good that I called Judi to go walking with me. We did our usual 2 mile walk down Fletcher and to the top of Seqouia and back. I am motivated to eat better and exercise. I would like to see if it's possible to lose any of my steroid weight.

Bill took the kids to Wal-Mart today. It was their "payday" with allowance, and they wanted to go spend it. I thought he was crazy to go to Wal-Mart today, and he said it was pretty wild on the day after Thanksgiving. They were gone several hours, so I had a peaceful afternoon. Molly and Cameron bought movies, Nate bought a PS2 game, and Isaac bought a Star Wars StormTrooper helmet.

Other than that, we spent the day at home. Ate Thanksgiving left-overs. Cameron bought GhostBusters 1 and 2, so we watched the 1st one as a family tonight and it was hilarious! We're going to watch the second one tomorrow.

It's late now, so I will sign off and write again tomorrow. I'm hoping I feel this good for the next while -- at least until it's chemo time again!

Much Love,
Michele

HAPPY THANKSGIVING!!! NOV. 27, 2008

Hi Friends!!!

We had some internet issues, so I didn't get to blog on Thanksgiving -- but now I want to tell you about it. We had a very nice and relaxing family day at home. I was struggling with a headache. I have what is referred to as a "lupus headache," and when it's bad...it's bad. I take Vicodin to cut the pain, and it is getting better with the chemo. I used to have to take morphine for it. But anyway, I am getting off-topic... I had a headache, but it was still a nice day, because I had the whole day free with no responsibilities.

My sweet neighbor, Terry, showed up at 10 a.m., and when I got out of the bathtub -- she was sauteeing onions and celery and stuffing my turkey. The house smelled wonderful, and she is such a cheerful and caring woman. She even had Molly cooking with her, and the kids were all enjoying talking with her while she cooked. She put Bill to work on the stuffing, so that was pretty funny, too. So, thanks Terry -- you and your cooking equalled a big hit for us on Thanksgiving!!!

We spent the day lounging around home and smelling the turkey baking. I took an afternoon nap and awoke feeling much better. I must say, my family has been really good about letting me sleep when I need to -- and I always do better when I listen to my body rather than ignore it, go figure!

We ate dinner around 5 p.m. and "Auntie Annie" came to enjoy it with us. We had quite the spread! Turkey, stuffing, pumpkin pies from Terry, Cranberry sauce from Annie, Cornbread Souffle and Green Bean Casserole from Shirlene!! All Bill and I made was the mashed potatoes and gravy. And we heated up some rolls and cookies.

We drank champagne (adults) and sparkling cider (kids) in the fancy glasses and used Grandma's fancy china. We toasted things we were thankful for. Isaac was thankful for Jesus dying on the cross and "rosing" again, Nate was thankful for PS2, Molly was thankful for her cat "Bo Bo," and Cameron was thankful for all the Thanksgiving food. Annie was thankful for becoming part of our family and Bill was thankful for his better health. I told everyone that I was just thankful to be alive, because I seriously thought earlier this year I was going to die from my lupus. We had a touching moment where everyone said they were glad I hadn't kicked the bucket either.

But seriously, at 2 points in my hospital stays -- I did question whether I'd make it. The first time was when the infectious disease doctors all came in together to tell me my spinal tap came back "abnormal," and the second was after not seeing my kids for several days. After my last hospital stay, I cried as soon as we hit Simi Valley, because I hadn't thought I'd make it home again. And then, when I saw Cameron -- I cried and cried because he hates hospitals, so I had gone over a week without seeing him.

Anyway ... the point is I am so thankful to be home. To have a correct diagnosis. To have a treatment plan, which isn't always fun, but is working. I appreciate the little things now in a way I never did before. And I have a slower pace to my life. For the first time in my life, I am a human being, not a human doing. After thinking you might die or not ever see your kids, the little things they do tend to bother you less. That's for sure!

After Thanksgiving dinner, we watched a movie. It was "War of the Worlds" -- Bill's choice, not mine. And then we all went to bed.

Hope your Thanksgiving was wonderful, too. Look for the blessings in the little things!

Much Love,
Michele