TO MAINTAIN A HEALTHY LEVEL OF INSANITY...

These are a few more pictures of our recent camping trip at Lake Isabella -- AKA, my last hurrah before 6 more months of chemo. And the last two pictures are of Bill's tattoo. He just had the footprints added last night -- symbolic of our Walk to Emmaeus.

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Hi Friends,

I'm feeling much better today. So, my challenge will be not to overdo it. I'm going to spend the day puttering around the house, and this afternoon we will go to 5:30 church. Brandon and the boys are outside skateboarding, Molly is outside juggling, and Cameron is what else -- watching TV. I just reminded him that he needs to cut the grass today, but he has decided to put it off until the last possible moment and do it after church tonight. I can't say that I blame him!

Bill's tattoo turned out nicely, and he was home by 9:30 last night with our Chinese food. I'm including some pictures for you. He is currently outside changing the oil on his beloved Harley-Davidson motorcycle!

And rather than boring you today with the details of my life and illness, I thought I'd share this. My sister-in-law, Shawnna, sent it to me a few months ago. I think it is too funny!

TO MAINTAIN A HEALTHY LEVEL OF INSANITY ...

1. At lunch time, sit in your parked car with sunglasses on and point a hairdryer at passing cars.

See if they slow down.

2. Page yourself over the intercom. Don't disguise your voice.

3. Every time someone asks you to do something, ask if they want fries with that.

4. Put decaf in the coffee maker for 3 weeks. Once everyone has gotten over their caffeine

addictions, switch to espresso.

5. In the memo field of all your checks, write "For Marijuana"

6. Finish all your sentences with "In accordance with the prophecy."

7. Skip down the hall rather than walk and see how many looks you get.

8. Order a diet water whenever you go out to eat, with a serious face.

9. Specify that your drive-through order is "To Go."

10. Sing along at the opera.

11. Put mosquito netting around your work area and play tropical sounds all day.

12. Five days in advance, tell your friends you can't attend their party because you have a headache.

13. When the money comes out of the ATM, scream "I WON! I WON!"

14. When leaving the zoo, start running for the parking lot, yelling "Run for your lives! They're

loose!"

15. Tell your children over dinner, "Due to the economy, we are going to have to let one of you

go."

16. And the final way to keep a healthy level of insanity. Share this with someone else to make

them smile. It's called THERAPY!!!

HAVE A GREAT DAY!!!

Much Love,

Michele

I'M TAKING THE DAY OFF...

This is our sweet cat Bo Bo, the ultimate expert in being laid-back!

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Hi Friends!

Well, I was planning to take it easy today, and that is what I did. After sending Cam and Molly off to school and Bill off to work, I lay back down for some much-needed sleep. Brandon was over today to hang out with Nate and Isaac. Even though it was raining, they spent much of the day outside building elaborate skateboarding ramps. It must be fun to be a little boy! I was reminded of this saying, though -- "Mothers of little boys work from son-up to son-down!" They do seem to create chaos and mess everywhere they go. But I say, "Oh well! Life is messy, and cleaning it up is overrated!"

I got up at noon to make sure nobody had burned down the house, and I made them macaroni and cheese for lunch. Not that they can't feed themselves, but by this time there were many poptart boxes and sodas strewn about. So, even with my illness, I have the occasional need to act like a real Mom and feed them real food.

I then went back to bed until 2 p.m., snuggling with my sweet cat BoBo. I did manage to get up and shower before it was time to retrieve Cam and Molly from school. Shirlene decided to leave work early today, so she picked up Brandon, Nate, and Isaac by 2:45 p.m. to go to Palmdale for the night! I LOVE SHIRLENE!!! I picked up Cameron and Molly from school, and then we took another trip back to Molly's school for good measure! Apparently, she had forgotten her science book in her locker at Hillside Middle School, which I felt was needed for her to do her science final project this weekend. It is due on Monday, and she hasn't started yet. She has to do a slideshow on the computer, summarizing her favorite chapter from the science book. She explained to me that she didn't really need the book, because after all -- she knows what the chapter is about -- plants!!! But mean mother that I am, I forced her to go and get it! I think she'll thank me later if I don't throttle her first!

After that, I did a bit of housework, and I am currently watching some TV. I am actually watching some really great religious programming on TV right now. I haven't been to church for a few weeks due to illness and being out of town. I am definitely looking forward to going on Saturday.

It's really quiet here right now with just Cameron and Molly home and doing their own things. Bill worked late, and he just called to say he's stopping to have a band added to his tattoo before coming home! He has a Bible verse and cross on his arm, and he has wanted for a long time to have a band of footprints put around it. They will symbolize our Walk to Emmaeus. I'm really just jealous, because it will be a long time before I can get another one. We both have tattoos for each other. He has an angel with my name on his arm, and I have a lion with his name on my back. After 18 years of marriage, we figured it was safe to permanently ink our names on each other! I said I would never get another tattoo because they are so PAINFUL, but I've now decided I'll get one more after my whole lupus/chemo journey has passed to remember it by. So, it will probably be 12 small flowers with a butterfly and a Bible verse. We'll see. I have plenty of time to plan it, because right now I think my doctors will kill me if I even broach the subject of getting a tattoo.

I am going to lay back down. Cam and Molly are making their own dinner. And Bill has promised to bring me Chinese food for us to eat in bed together we he gets home. What a romantic husband I have!

More tomorrow...

Much Love,

Michele

RELAXING THURSDAY ...

Hi Friends!

Well, of course -- my whole pretending to be normal yesterday took its toll. What was I thinking? After all, normal is just a setting on your dryer. But as usual, I did too much. After grocery shopping late in the evening, I was listening to a book on tape with Bill last night. We are doing a Heaven Bible study, and so we needed to prepare for the 1st study by listening to the intro and preface. I remember listening for a little bit, and then I woke up to Bill saying, "Did you like it?" So, I guess I fell right asleep. And I was so tired last night when I went up to bed that I put my V-neck PJ's on backwards. I sure looked silly when I got up this morning.

So, I decided to take it easy on myself today. Brandon is already done with school for the summer, so he came over for the day. He'll also be over on Friday and Saturday. I decided to give the boys today and tomorrow off of school so that they could enjoy some time with him. He starts summer school next week. And I am planning to do some summer work with all the kids as well, so a few days off won't kill them!

I slept in until 9:30 when Brandon arrived, and he then took over and watched the boys all day. He really is a nice kid, and the boys see him as a big brother. Annie and I went to a post-garage sale give-away that was advertised on Freecycle this morning. It was pretty picked-over, but I got a few things -- some clothes, a mop, a bedskirt, etc. We then stopped at McDonald's and got some food to bring home for lunch.

The boys were thrilled about that. Brandon and Nate spent most of the day building ramps and skateboarding. Thursday is early-release day for the public elementary schools here, so Heather and Will came over when they got done with school at 12:50 p.m. Heather played Barbies in Molly's room, and Annie read her some stories and played "horsie" with her. Will and Isaac played with their army men all afternoon. And after Cam and Molly did their homework and chores -- they watched TV and just hung out. So, it was quiet, and I did some puttering around the house. And I got in a baking mood and made brownies and chocolate chip cookies for our Bible study tonight! That was fun because I hadn't baked in quite a while.

Tonight we had our first Heaven Bible Study at our house. It's from 7-9 p.m. each Thursday for the next 12 weeks. Bill is leading it and it is based on the book by Randy Alcorn. We have 14 people signed up, and it looks to be a very good study. Annie is babysitting the kids for us upstairs as usual. She does it for $5 a kid, which is quite a good deal for the parents.

So, right now all of our kids are in bed, and it's time for me to turn in, too. Cameron and Molly will be up early for school in the morning. Nate went to Brandon's house tonight, and he and Brandon will be back bright and early when Shirlene has to go to work. Isaac was invited, too -- but he chose to stay home because he was having so much fun with Will. Tomorrow night he and Nate will go on their usual Friday night sleep-over there. And, they are planning to have Will spend the night here on Saturday. I'm sure we'll end up with Heather, too -- othewise she'd feel left out.

More tomorrow ...

Much Love,
Michele

GOOD MORNING, SUNSHINE!!!

Above are some pictures of our camping weekend at Lake Isabella!

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Hi Friends!

Well, I thought I'd share the unbelievable this morning. I've been up since 7:20, and I am still going. I had to drive Cam and Molly to school this morning as Bill had an early morning meeting at work. So, the kids dragged me out of bed. I had put Molly's hair in rag rollers, so she had curls this morning after we took them out. And I always make their lunches in the morning. They are especially chatty in the morning, so it's a nice time to hang out with them.

I went to bed last night after 1 a.m. The good news is that I finally caught up on my laundry by staying up that late. I had a bit of trouble sleeping, so I was up from 3:30-5 a.m. I can take Ambien, my sleeping pill, as needed -- but if you don't have 8 hours of time to sleep, you can't really do it. Plus it tends to leave me feeling really groggy in the morning. So, I avoid it if at all possible. Anyway, I was surprised to feel half-way decent upon waking this morning with so little sleep. So, on the way home from taking the kids to school -- I stopped at 7-11 for a Big Gulp and a Power Bar in hopes of staying awake. And so far it's going well.

We still have June gloom going right now, so I'm going to walk this morning while the sun is still hiding. Then we'll do homeschooling. I also want to recycle with the boys today, because I have a ton. We usually make enough money to go out for lunch! And tonight Bill has his Men's Group. After putting the younger boys to bed tonight, I really need to grocery shop -- so I plan to put the older kids in charge.

Anyway, those are my plans. But you know the saying, "If you want to hear God laugh, just tell Him your plans!" So, I'm sure things will happen in a different way than I've planned for the day. I'll just try to go with the flow. The key is to ride the waves of life instead of getting knocked over by them! But then, we all have those days when we get knocked over and are laying there flat on our backs asking, "What Happened?"

More tomorrow ...

Much Love,

Michele

P.S. -- Happy Birthday, Richard Twohig. Today my Dad is 67 years old if I've calculated correctly!

MOVING FORWARD WITH GOD'S PLAN ...

Hi Friends!

I started this morning with an early (8:30 a.m.) appointment with Dr. Cohen. So, I got up early, which tends to be very hard for me. But I did it -- and after taking Cameron and Molly to school, Annie and I went to my appointment. Annie had sweetly offered to drive me as I am a bit dizzy due to the new fibro meds! I do OK with short drives, but the drive to T.O. was probably not a good idea for me. Because she was nice enough to take me, Bill was able to stay home with the boys and do some work from home at the same time!

We stopped at Jamba Juice and got our breakfast. We took a Jamba Juice for Dr. Cohen as well. He really feels like family at this point. My appointment with him went well. It was kind of funny, though -- he seemed quite overprotective of me! When I told him that Dr. Karpouzas felt strongly I needed to do 6 more rounds of chemo -- he was OK with it, but basically he left the choice up to me. Dr. Cohen feels I am doing really well, and he is just wanting to make sure that I am aware of all the risks (cancer, death, etc.) that go along with Cytoxan. I am, and I appreciate his concern -- but I am going with Dr. Karpouzas' treatment plan. I figure I should go with the most educated and knowledgeable opinion when it comes to CNS Lupus. And as Dr. Cohen has told me, Karpouzas is a "scholar" and he did write several of the chapters in the "Lupus Bible"-- the manual used by all rheumatologists in treating lupus. Also, I found it helpful that in prayer, God had told me to go with Dr. Karpuzas' plan, and that it was a gift for me!

So, all in all my appointment went well. Dr. Cohen says I am a real "success story!" I am down to taking only 6 meds on a daily basis. Considering that I used to take more than 20 -- I am thrilled. The new fibro meds seems to be helping, and Dr. Cohen says I should do even better as my body adjusts to all the medication changes. For example, I am now off Prednisone, which I took for more than one year. So, according to my doctors, my body is still craving the steroid high it grew accustomed to. Fun stuff like that!

After seeing Dr. Cohen (rheumatologist extraordinaire!), we went next door to see Dr. Menco (my favorite oncologist!). I paid him the $450 I still owed him from the last 6 rounds of chemo, so that we could restart with a balance of $0. I have an appointment with Dr. Menco on Monday, and I would imagine that after consulting with him -- we'll start chemo shortly after that.

I returned home and immediately lay down for a nap. After waking up, the boys and I did homeschooling. This afternoon the house cleaners came, which was nice. I took the boys to 7-11 and then to the park while they were here. I actually did some walking around the track at Lincoln Park. That was the first time in a while that I've walked! So, score 1 for me, o for lupus,fibro,etc. I had just been too fatigued and in too much foot pain to do it for the last while! Here's hoping I will be walking again soon! But I tried not to overdo today.

I then picked up the kids from school. Right now Cam and Molly are watching TV. And Nate and Isaac are playing in the backyard with Heather and Will. I'm going to sign off and work on laundry and making dinner!

Much Love,
Michele

MONDAY, MONDAY!!!

Hi Friends!

We had a lovely day at home today. I was tired out this morning. I usually am, but this morning I was even more so after unpacking and cleaning up the camper last night. So, I sleepily got up and helped Cam and Molly get ready for school, pack lunches, etc. at 7 a.m. Then when Bill took them to school, I went back to bed until 10:30. At that point, Isaac insisted that I get up. "Mom, we need to learn!" He is an awfully cute alarm clock! So, we homeschooled and just managed to get everything done by 3 p.m. when it was time to pick up Cam and Molly from school. The boys both wrote about camping in their journals today. Boating was the highlight for both of them. Some of our Scout friends had a boat, and they took everyone boating on Lake Isabella. The kids had a blast!

After picking up the kids, I took a shower and tidied up the house a bit. I also started working on some laundry -- there was quite a bit after our camping trip! Heather and Will came over to play with my boys, and they stayed until 6 p.m. I went over to check on Judi. She is doing OK, but her leg is very swollen which is bothering her. Terri was over cooking her dinner! We have such a great neighborly group of women here on Fletcher St. I feel so blessed!

After feeding the kids dinner, I sent them upstairs by 7 p.m. Today was the first day of a new Bible Study that I am leadingat our house. We meet from 7-9 p.m. It's called, "Learning to Live with Chronic Illness." I am very excited about the study, and for the first night we had a great turnout and a great time! We will be meeting every Monday for the next 6 weeks. Don't worry, I've recruited Annie to be my co-leader for any bad weeks -- probably the chemo weeks.

Tomorrow I have an 8:30 appointment with Dr. Cohen. So, I'll have to get up early. YUCK!!! Annie is going to drive me, because the new fibro meds help, but they make me dizzy -- which is not the best for driving! We'll take Cam and Molly to school at 7:30, and then just go directly to Thousand Oaks. Bill is going to work from home, so that he can watch the boys until I get back from the appointment.

So, more tomorrow ....

Love,
Michele

A GIFT ...

Hi Friends!

Sorry, I haven't blogged for a while. I'll start first with my lupus news. On Wednesday I went to UCLA to meet with Dr. Karpouzas, the director of rheumatology, who specializes in cases of lupus like mine that affect the central nervous system and brain. Tuesday night I was worrying about the appointment, and when I prayed to God -- I clearly heard him tell me that I would be receiving a gift from Dr. Karpouzas with his treatment plan. Of course, I began to whine to God, saying, "But what if I have to do more chemo?" And then God reminded me that this might be the 6 rounds that saves my life by putting me into complete remission. At that point, I felt secure and no longer worried, but I was quite sure God was preparing me for more chemo.

On Wednesday, we met with Dr. Karpouzas. He is really happy with my progress -- lupus-wise. He hadn't seen me for 9 months, and the last time he saw me, I was looking really bad! However, he wants me to do the rest of the chemo cycles (6 more) as we originally planned. He said it was fine to stop in order to check my kidneys, etc. for damage. But 12 rounds is the standard treatment, and so we need to do it. He also feels I have fibromyalgia in addition to the lupus, so I am starting some new pain medication for that, which will hopefully help my hands and feet to feel much better. And he is working on tweaking some of my other meds. As far as the fatigue, besides being a symptom of lupus and fibromyalgia, he feels I am "snowed" from all of the meds I am on -- many of them cause drowsiness. And now I don't have the Prednisone as an upper anymore.

So, on Tuesday, I see Dr. Cohen to put this plan in action. I imagine that I'll start chemo ASAP as soon as Dr. Menco, the oncologist, can set it up. I am hoping to get 3 rounds done over the summer while the kids are off. Cameron is thrilled, because I was planning to make him get a summer job. However, we've now agreed he can stay home and help me around the house.

Wednesday night, Bill decided to rent a camper so that we could go camping this weekend. I think it was his way of dealing! So, we spent Thursday and Friday, getting things together. Then we spent the weekend at Lake Isabella, which was a lot of fun and very beautiful. I came home feeling quite happy and rested. I will try and post some photos tomorrow, as I took quite a few.

More then ...

Love,
Michele