THE NEIGHBORHOOD KIDS ARE HERE DOING CHORES...

Hi Friends,

Let me start with a funny story...During the summer, my kids have chosen to play all day and have free time with the stipulation that they're home by 5 p.m. to do their chores. That way the house is ready and chores are done before Bill gets home from work. I keep hearing from the other Moms in the neighborhood that their "kids won't do chores." Well, today Nate and Isaac came home at 5 p.m. with their friends, Mason and Matthew. The four of them begged me to let them all do chores together. I had to laugh. I now have 6 children (rather than my usual 4) cleaning up my house. And they're all very happy, because I told them they can go out to play while they're finished. Nate is reminding me a bit of Tom Sawyer today -- he can truly make anything seem fun:-)

Other than that -- I'm dealing with a headache today. I'm hoping it's not the lupus headache coming back. I tried several different meds to deal with it, but I am not having much luck. So, I elected to stay busy today and cleaned the dining room and kitchen. At first I thought I was making a bigger mess by cleaning -- because it just seemed like I was stirring up more animal fur. But now that I'm done, I'm feeling pretty proud of myself. I can even walk on my freshly mopped kitchen floor barefoot without my feet sticking to food on the floor.

Bill is due home soon, and there are church activities tonight for Nate and Molly. I'm going to take it easy and do some reading. I did manage to get out of my PJs and get dressed after the cleaning -- so I'm golden!

Have a great day!

Much Love,
Michele

TUESDAY WITH ANNIE AND FRIENDS...

Hi Friends,

I had a lovely day today. Annie drove over from Simi Valley and brought two friends along for the kids. Regina is Molly's age, and Jesse is Nate's age. They all had a great afternoon together. Nate and Jesse spent hours at the park skateboarding, and Molly and Regina spent the afternoon hanging out and being girls in Molly's room. Isaac seemed to enjoy the quiet and having Nate entertained by Jesse. And Cameron hung out with me and Annie for a large part of the day.

Annie supported my Double Big Gulp habit today -- so I got my caffeine fix. And she brought us a lovely McDonald's dinner of chicken nuggets and fries, so my kids were in fast food heaven:-) Bill got home right before the Simi Valley friends went home at 8 p.m. It was a wonderful day spent relaxing and hanging out with good friends. Couldn't have been better, in fact!!! Now I am just playing around on the computer. And soon, I'm planning on heading off to bed...

More tomorrow!
Much Love,
Michele

SPEND THE AFTERNOON...

"because you can't take it with you..." --Annie Dillard

Hi Friends!

I had the perfect Sunday, which is why I was left with no time to blog yesterday. Our whole family made it to church together. Then when we came home...Nate and Isaac went to a birthday party for their friend Mason...Cam and Molly tidied up the house and then did whatever teenagers do...Bill went out to the land...and I took a long, lazy Sunday afternoon nap. We all met back up in the evening for pizza from Little Caesar's and I had some Scotch with Bill. Then after dark, I convinced Bill to take his vampire wife out for a walk around the neighborhood. It would have been prettier without clouds, because we couldn't see the moon or stars...but it was still nice:-)

Today I slept in and recovered from the Scotch and the walk. Bit of a headache after only 2 shots (WAH!!!). I can feel my leg muscles after the walk, so that is a good thing. I did a trip to 7-11 for some Monday energy in the form of a Big Gulp, and other than that -- just did a few things around the house. I cleaned up our master bedroom and the living room and then just hung out with the kids.

Bill got home late, but still made us a lovely dinner. We had linguini with roasted peppers and salad and broccoli. And then he cut my hair, which is in an interesting growing-out phase from the chemo. But he did a good job considering what he had to work with...he still flies as SuperMan!

I'm off to bed...more tomorrow!!!
Much Love,
Michele

GIRLS' ROAD TRIP...

Hi Friends,

Yesterday I accomplished (with help, of course) my two main goals. First, I got Molly and Amber in for their manicures/pedicures at a local nail salon. I had been promising this little treat to them for a while as Amber's birthday present, so I wanted to make good on my promise. Second, Molly, Annie and I successfully roadtripped to Palmdale and back to retrieve Nate and Isaac. The traffic was horrendous and it took over 3 hours to make the 80 mile trip to Palmdale, but we took a different route home and it was later in the day -- so that leg of the trip went better.

I'm glad to have my two little ones home again -- it's definitely too quiet without them. We didn't get home until around 11 p.m., because we stopped to visit with Frank and Shirlene. So, Nate and Isaac fell asleep on the way home. I think today they are both due for a bath/shower as Shirlene said they both "forgot" to pack underwear. And I noticed that Nate was still wearing the same clothes he left my house in. Gotta love little boys. Currently they're at the park playing with their friends -- who missed them during their absence. Not going to push the cleanliness issue until tonight as they may end up out on the land later today with Bill.

Our friend, Jef Turnbull from Simi Valley, has some wood beams for out on the land -- so Bill and Cam took the trailer out to pick them up today. They're going to stop back here in Oxnard before heading out to the land. So, I have a feeling that Nate and Isaac may want to trek out there, too.

Meanwhile, I'm going to take it slow and easy today. Yesterday was a fun but long day for me. So, my goals for today are simply to shower and do a little tidy up around the house + laundry. Bill got the power working yesterday and did grocery shopping and more while I was gone. And this morning he took Isaac out to buy new shoes. They finally found something that Isaac was OK with at Discount Shoe WareHouse on Vineyard. Isaac is VERY picky about shoes -- they're usually too lumpy or bumpy or tight or loose or feel funny. So, it can be a challenge to shoe shop with him, and if you come home with anything less than perfect -- he won't wear them. So, here's hoping the new shoes last a while. His previous shoes had huge holes in them, and it took trips to 3 different stores to find these!

I'm off to do my thing...have a great day. I posted this prayer for all my friends on FB today. So I want to share it with you too:

May you have wings to take you above your troubles. May your life be a sacred place where you can meet your God...all encompassing, non-judging...where you can just be! May you be cradled in hope, kept in joy, graced with peace, and wrapped in love. (adapted from the prayer shawl prayer...)

Have a great day! It is what you make of it:-)
Much Love,
Michele

FRIDAY...

Hi Friends,

It's been a busy day...I took Molly and Amber to get their nails done this morning. While they were at the nail salon, I returned an overdue book to the library, stopped for a soda, came back home to beautify myself, and then before I knew it -- the girls were calling to be picked up. I can't wait until I have a child with a driver's license:-)

I also took a bunch of sad calls from Isaac who continues to be homesick in Palmdale. Annie is going to roadtrip with me and Molly today, and we will retrieve Isaac and Nate. Nate is less than pleased as he wanted to stick to the original plan and come home on Saturday. But by the time we get to Palmdale today, it should be late and I'm sure we'll stay and visit for a while. I told Nate that I can't make a 3 hour trip two days in a row. I mean, I'm not even able to drive that far for one day -- Thank goodness I have Annie and Bill, my designated drivers.

Yesterday we lost power in part of the upstairs -- laundry room and the two upstairs bathrooms. We were doing laundry and vacuuming rooms when it blew. Bill checked all the circuits and reset the power -- but no luck. So, the landlord needs to send someone out to fix it. In the meantime, the upstairs bathrooms aren't too bad -- as we have one downstairs and during the day, there's plenty of light upstairs. The laundry room being nonfunctional is more of a problem with a family of 6. Luckily, Molly did a bunch of loads yesterday before it went out -- but I don't think we can make it too long without being buried in Mount Washmore!

So, I'm off to Palmdale for the day...leaving Bill and Cam here to grocery shop and hold down the fort. Bill also took his motorcycle in and it's not running...not sure what's wrong...just glad he got his car fixed before the motorcycle broke down. At least the Harley is under warranty unlike our "beater" car.

Have a great day!
Much Love,
Michele

A QUIET HOUSE????

Hi Friends,

I didn't get around to blogging yesterday. I took Cameron to the dentist. That in itself is a small victory for me...I am completely off narcotics and able to drive for short distances. Cameron got 3 out of his 9 cavities filled -- so only 2 more visits left. And then of course, I need to see the dentist as do the other 3 kids. It's a good thing I like our new dentist as we may be spending a lot of the summer at his office. Makes me miss the days when I had 2 uncles who could be my dentist:-)

After getting home with Cam yesterday, Shirlene came and picked up Brandon who had been staying with us since Saturday. She brought a big bag of food from Taco Bell and was mobbed by starving children. Bill is feeding us very healthy food, and although I appreciate it -- the kids tend to think they're missing out on something.

So, after chatting with Shirlene for a while -- she headed off for Palmdale with 3 boys, Brandon, Nate and Isaac. They are staying there until Saturday when Bill will pick them up. The house seems oddly quiet with only 2 children. I'm sure the break will be good for my health (mentally and physically). But I guess after all these years and 4 children, I've learned to embrace the chaos.

Isaac (being the youngest and 7 years old now) had the hardest time dealing with my illness. He seemed to adapt by becoming even closer to me. Now he tells me that, "One good thing about having a sick Mom is that you're always available to snuggle." So, I was proud of him -- that he wanted to go, and he seems to be doing OK. I am getting a lot of cell phone calls from him, though. And he had one tough moment last night at bedtime when he called and said, "I don't think I can do this...I feel funny." But he was easily talked down via phone and text messages. I love to text message him, because it helps him with his reading. I just have to be careful to type out the whole word rather than using texting shortcuts.

So, this morning, I managed to sleep in until 9 a.m. when Cam's cell phone alarm woke me up. It doesn't seem to have the same effect on him though. It's currently almost 2 p.m. and my 2 teenagers are still sleeping. I usually make them wake up at noon, because I tend to need their help by then. But I've decided to leave them be, so that they can enjoy the time without the little monsters/angels.

I took the big step of completely canceling my housecleaners today. At my sickest, they were coming every week. Then we switched them to every other week. Now I've found that with the kids home for the summer, we can keep the home in decent condition. The kids do the laundry, dishes, and daily upkeep. And I can clean one room or two per day. I move slowly and view it as my daily exercise as I'm not allowed to go outside. And it will save money while making me feel more like a productive member of our family, if not society. I never thought I'd be so glad to be able to keep my own house clean:-) An illness really can change your perspective on things. Like I've said in the past...lupus truly is the gift that keeps on giving!!

So, I'm off to shower and do a few things around the house. Yesterday, I cleaned the little boys bathroom and walk-in closet (technically part of the master suite -- so they're both huge). That was a challenge as it looked like a Tornado (or Tornater) had hit both areas. I don't think I have the energy to do their room while they're gone (plus they made the mess and should clean it up) ... so I think I'll help Cam and Molly with their rooms if they ever wake up. Maybe after my shower?

Have a great day:-) For all of my prayer warriors, please pray for Bill as he looks for a more reasonable rental that will suit our needs as we spend the next few years building on the land.

Much Love,
Michele

I STILL HAVE ENERGY...

Hi Friends,

This will be short as it's time for bed. I have some good news. I still have energy, so I'm really happy with my new shots and med routine. I'm waking up in the morning, and even cleaning a few rooms in my house each day. I've lost more weight, thanks to no more steroids and Bill's healthy cooking. When I got sick about 3 years ago, I started this journey at 125 lbs. Over the two years between steroids (putting me up in the 160s) and chemo (fast weightloss from puking), I think I'm finally getting back to my normal weight. Today, I busted into the 130's and weighed in at 139.2 lbs, so since 130 is my ideal weight -- I only have 9.2 lbs to go. It makes me feel happy, because the lupus and steroids tend to be hard on body image.

I actually made it upstairs today -- for the first time in about a month. Stairs are so hard for me. There is no reason for me to be up there as there are 3 kids bedrooms, their 2 bathrooms, and the laundry room up there. And now Molly has taken on all the laundry. She's such a sweet girl. I do all of my living downstairs, which includes our bedroom, bathroom, living room, dining room, and kitchen. But today I was feeling brave and I walked upstairs. It was about what you'd expect with 5 children living up there this week. I decided to vacuum and dust the steps and hall. I also cleaned and did floors in the laundry room and Cam/Mol's bathroom. Tomorrow I hope to clean Nate/Isaac's Big bathroom and straighten up the walk-in closet. Then we'll do a kid room each day for the rest of the week. So, it appears I can slowly make it around the house cleaning a room or two a day, and I am going ahead with the plan to cancel our cleaning ladies. We can use the extra money for the land:-)

Tomorrow I have to take Cam to the dentist at 11 a.m. It is the start of getting his 9 cavities filled. Fun, Fun! Shirlene and Frank are coming to pick up Brandon, Nate, and Isaac and will take them all to Palmdale for a few days. Bill is willing to go and pick them up on Saturday. They need to be home by Sunday for Mason's birthday party.

So, nightie night:-) I'll write more tomorrow...

Much Love,
Michele

P.S. -- Happy Birthday, Mom!

MONDAY, MONDAY...

Hi Friends,

I fell behind on blogging this weekend -- just got busy. On Saturday, my good friend,Shirlene, brought her son, Brandon, to stay with us for a few days while she and her husband go on a trip. Brandon is Cameron's age and we've known him since they were both in second grade. He really is part of the family -- especially acting as a big brother to Nate and Isaac. So, we were thrilled to get Brandon for a while this summer as he's turning 18 soon and might decide he's too cool for us at some point:-) But for now, he prefers us to a vacation with his family, and we scored free entertainment for Nate and Isaac. It's a win-win situation for both families. Brandon and the boys are currently at the park playing with a bunch of neighborhood kids.

Yesterday we ALL went out to the land to celebrate Father's Day for Bill. Yes, me and the kids and Brandon + Bill. My husband wouldn't let us buy him anything for the day, so I thought at least we could all go to his favorite place. The kids all helped him with a few projects, we had a picnic lunch, and then we just sat and enjoyed nature. I did make the walk up the mountain to our future homesite, which was pretty good considering I haven't walked up the stairs at our house for several weeks. But even though I spent most of the time in the trailer or under a huge awning and covered up -- the time outside really wiped me out. The next time I go along, we decided we'll go later in the day -- more like for dinner and the sunset as I'm a vampire.

But what was important was that Bill had a good time. And the kids did, too. On the way home, we stopped at the sand dunes on PCH. It was a lot of fun to watch Brandon, Nate, and Isaac rolling and somersaulting down them. Molly did sand angels. And Cameron watched from the truck with me and Bill. We didn't make it home until after 9 p.m. at which point SuperMan (or in this case, SouperMan) insisted on making minestrone and bread for dinner. He never takes a day off. It was a great dinner and we all stayed up way too late. Almost everyone slept in today.

I'm off to work on a few things around the house. Not sure how long I'll last today... I ran out of my Ambien (sleeping pill) yesterday and refused to send my dear husband out on Father's Day to Walgreen's. I thought I could live without it for a night, but I ended up not falling asleep until 5:30 a.m. I had about 4 hours of sleep, so I'll be glad to have the Ambien tonight...

Have a great day:-)
Much Love,
Michele

TGIF...

Hi Friends,

I'm looking forward to the weekend and having Bill home...so sad that he has to work over the summer:-0 The kids keep asking, "Where's Dad?" We'll try to take it easy on him this weekend as it's Father's Day. Maybe a Sunday out on the land?

My recent B-12 shot and new pain meds are working well. I have some energy. Considering that I had none before, I'll take it. Yesterday I cleaned my bedroom and bathroom and today I'm considering doing some work in the living room and front entrance.

One of the hardest things about this illness is that I feel like a vampire. I live in beautiful, sunny California and I'm not allowed in the sun AT ALL:-( I don't take that well. To replay my most recent conversation with my favorite doctor regarding this:

Dr. Cohen: "You're doing so well. Are you staying out of the sun? And I mean no sunlight at all..."

Me: (sounding sort of like President Clinton and what's the definition of "is") "Well, yeah...but what do you mean "NO" sun. What if it's just for a few minutes while I'm wearing SPF 100 (yes, they make it!) and lots of clothes and a really big sun hat? What if I'm outside and it's sunny, but I'm in the shade...?"

Dr. Cohen: "Well, that would be enough to put you back into a flare...Do you want to be doing IV steroids and chemo earlier than October? I don't want you back in the hospital for a month."

You get the idea and so do I. It's just that I really love nature and the outside. Ultimately, like a child -- I want what I want when I want it. WAH!!! I have to put on my "big girl pants" and focus on what I can do, not what I can't... I think I'll start going out after sunset...lighting is great in our little "planned community." And, I told Bill we need REALLY big windows when we build our house on the land. It will make me happy to see him and the kids on the land even if I'm the cheerleader who's inside watching... and coming outside to watch the sunset. Shh...don't tell Dr. Cohen! That was one good thing about my most recent doctor's visit...Bill wasn't there to tattle on me to Dr. Cohen. Now don't get me wrong, I know they both are working in tandem to keep me alive and I can be my own worst enemy...but sometimes I feel like a pet rock!

Ok, enough of that...today 3 out of my 4 children are up before noon. I will go and wake up Molly when I finish this. (Better yet, I just asked Cam to go do it.) They are doing really well with balancing fun and their increasing responsibilites this summer. Cam and Nate are completely responsible for the downstairs, including dishes. And Molly and Isaac do the upstairs, including laundry. They split pet chores and are all responsible for their own rooms, hygeine, and doing pills (for those special kids who need them!)Yesterday we made it to the bottom of Mt. Dishmore. We have really sucky dishwasher and really hard water in this rental house. The dishes look worse when they come out of the dishwasher than when they were put in, so it's pretty much pointless. Now that we're caught up, we're using paper plates. (Nate was concerned that we're ruining the environment and I told him I love the way he thinks...so feel free to recycle the paper plates rather than throwing them in the trash!) And we just wash everything else by hand, which can be a challenge as Bill is a great cook but seems to use LOTS of pots, pans, etc.

Molly has taken to putting Isaac to bed at night -- even reading him stories until he falls asleep. Cam and Nate usually hang out together at night, too and lately Nate has been crashing in a sleeping bag on Cam's floor. So, we have some good teamwork going. And most nights Bill and I are asleep before the kids. We're old and sick, they're young and full of energy:-)

Our lease is up here at the end of August and we're looking to downsize -- possibly an apartment while we build on the land. We may put up outbuildings on the land first to store some of our junk. But at this point, an apartment with even less to keep up will be good. I will be doing chemo again in October and Cam and Molly will be back in high school -- so that will put more workload on the two remaining homeschoolers (Nate and Isaac). Hopefully, we're training them well and they'll step up to the challenge. But this house is large 4 Bedrooms, 2 3/4 Baths, and worse -- it's 2 stories. Bill and I took the downstairs bedroom and gave Nate and Isaac the upstairs master. The stairs can be hard for me, and I have gone months without making it upstairs. So something more manageable would be nice for a bit. And without an HOA. Bill and I don't fit in well with all the regulations.

Ok...I'm off to do my Bible reading and then to take a shower and get dressed. Then I'll work on those few areas in the house...kids and Bill are good at picking up, cleaning, etc, but I need to do some organizing...yesterday I did well with 15 minutes of doing something, 45 minutes of rest, and that's 15 more minutes per hour of energy than I used to have. Never ever thought I'd be thankful to clean up my own house...but now I am.

More tomorrow...
Much Love,
Michele

RANDOM QUESTIONS POSTED BY A LOOPY MIND...

Hi Friends,

Two things I've been thinking about today...

1. Thanks, Dr. Cohen for the B-12 shot, but I wasn't expecting the energy to kick in so fast. I didn't need energy at 6:30 a.m. this morning when I had sleepy children who like to take advantage of summer mornings for rest. On a good note, I'm still up and even though I'm currently in my PJs -- I have plans to get dressed today and maybe even do a thing or two around the house. I just switched the housecleaners to biweekly rather than weekly. So, I'm going to try to help the kids a bit with housework. Don't worry -- my standard has gone from House Beautiful to House Adequate to Hopefully House not too Trashed. So, I won't kill myself...

2. The cortisone pain shot they gave me and the new pain meds are helpful. And I think Dr. Cohen is wonderful for giving me free samples of the pain med even if I did leave his office looking like a drug addict carrying 9 boxes of the pain med. I had to laugh, though, when I got home and opened one up to find each LARGE box contained ONE lovely individually-wrapped pill. Now I'm not complaining because they're extended release pills(so, one pill per day)and that's more than a week's supply. More than enough to determine if they work, then call my Doc on his cell (yes, I actually have his cell phone number and he always answers even at 2 in the morning!), and have him call in an RX. But I can't help wondering if the wasteful over-packaging and free samples to all the Docs contributes to the fact that my Rituxan infusion comes at the price of $32,000 a pop...I'm just wondering:-)

Other than that, I'm just hanging out at home enjoying the summer with my kids. The neighborhood kids (as in non-homeschoolers) are off of school now. So children were coming to my door before all of my kids were even up.

I guess I'm off now to get dressed and take advantage of the extra B-12 energy. The goal is to have energy and not use it all up and then do the crash and burn. I'll let you know tomorrow how it worked out for me. I have a bad track record on this, but I try to learn from my past. And, Annie, when I stumble -- I'll just make it part of the dance.

Have a great day:-)

Much Love,
Michele

VISITING MY FAVORITE DOCTOR...

Hi Friends,

I showered and got dressed and even drove myself to Thousand Oaks today for an appointment with my main doctor (and my favorite, too), Dr. Shariar Cohen-Gadol. It always feels so nice to be able to drive myself somewhere. Often due to mobility issues or because I'm taking narcotics, which are not safe for drivers -- I must rely on my family or friends to drive me anywhere I need to go. That lack of independence is hard to stomach sometimes...so today, I thoroughly enjoyed my drive to and from T.O., listening to music and talking on the phone. And I even made it early to my appointment, which was scheduled at 5 p.m.

Dr. Cohen was my biggest cheerleader today. He thinks I look great and am doing so well. He was so excited that "I made his day!" and he even hugged me. I am currently doing much better and only taking 7 different meds daily. I believe at one point I took 29, so that's a huge improvement. The joint pain is much much better. My tremors have gotten better. My kidneys are no longer constantly fighting an infection. My only 2 issues right now are headache and lack of energy. So, I got a B-12 shot for the energy. And another shot for pain control. And yes, there are new drugs out there every day for lupus...so I'm starting a new nonnarcotic pill for my headaches. Hopefully, I'll get some energy and pain relief. I'm still not allowed to see the sun, but I'd like to be able to get out of bed and move around in my house. We'll see what the Lord has in store for me... I was listening to the Dixie Chicks on my way home, and I heard,"I sure enjoyed the rain, but I'm looking forward to the Son." Yes, I changed the spelling -- Follow my thinking. I may be weathering a storm, but I'm looking forward to the Son.

After my appointment with Dr. Cohen, I drove over to MiMi's Cafe to have dinner with my friend Annie. (Or as we like to call her-- Alice from the Brady Bunch) We had an interesting dinner with really bad service, but we still managed to have a good time. I needed some Mom time away from the kids in order to come back my usual, happy self:-)

Now, I'm going to bed. Bill has to get up early for work. Sadly, someone has to work this summer in order to provide for our cushy lifestyle!!!

More tomorrow...
Much Love,
Michele

The God who catches me when I fall....

Hi Friends,

I'm reading a book by Max Lucado called "A Gentle Thunder...Hearing God through the Storm." Hmm...I wonder why that title caught my attention? Well,it does compliment my 1 of my 3 theme songs well. If you're new here... they are 1.I had a bad day, 2. SuperWoman, and 3.the one I'm currently talking about "Praise you through the storm."
A few of the lines are: And I will praise you through the storm, And I will lift my hands, You are who you are no matter where I am....anyway, it's a great song:-)

In Lucado's book there is a chapter called, "Held by His Hands...The God Who Won't Let You Fall." The author shares his experience of climbing a simulated rock wall. He fell but was caught by his safety harness and his guide. And so, he tried again, and when he got to the top of that wall -- he thanked the guide rather than celebrating it as his own victory.

I want to share how he compares this to our lives:

"Would that all my tumbles were so simple. So brief. So harmless. They haven't been. I've been known to let go of much more than imitation rocks. I've let go of promises and convictions. There have been times when my fingers slipped off the very stones of truth I treasure. And I can't tell you how many times I've expected to hit the bottom only to find myself suspended in midair, secured by a pair of nail-pierced hands.

'Try again,' he urges. And so I resume.

You and I are on a great climb. The wall is high, and the stakes are higher. You took the first step the day you confessed Christ as the Son of God. He gave you his harness -- the Holy Spirit. In your hands he placed a rope -- his Word.

Your first steps were confident and strong, but with the journey came weariness, and with the height came fear. You lost your footing. You lost your focus. You lost your grip, and you fell. For a moment, which seemed like forever, you tumbled wildly. Out of control. Out of self-control. Disoriented. Dislodged. Falling.

But then the rope tightened, and the tumble ceased. You hung in the harness and found it to be strong. You grasped the rope and found it to be true. You looked at your guide and found Jesus securing your soul. With a sheepish confession, you smiled at him and he smiled at you, and the journey resumed.

Now you are wiser. You have learned to go slowly. You are careful. You are cautious, but you are also confident. You trust the rope. You rely on the harness. And though you can't see your guide, you know him. You know he is strong. You know he is able to keep you from falling.

And you know you are only a few more steps from the top. So whatever you do, don't quit..."

(by Max Lucado. Read the book --it's really great.)

So, I'm sharing this with you in the hopes that it will encourage you as much as it encouraged me. Life is a journey and sometimes it seems like we're climbing a mountain. But knowing that the God of the universe has my back helps me to not quit. Rather I will take one step at a time in faith that with God I can make it to the top. And when I stumble or fall, those nail-pierced hands are there to catch me.

My friend, Annie, just called to tell me this phrase: "When you stumble,make it part of the dance." And my friend Shirlene called earlier to tell me that she hates lupus. I can relate because there are times when I hate lupus, too. But it's part of my climb, so I wouldn't change it. I will stumble. I will fall. I will trust God to catch me when I do. And I look forward to standing on the mountaintop where my breath will be taken away when I see my Savior face-to-face. And in the meantime, I will enjoy the NOW moments of my life.
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And what, you ask, am I doing besides musing on the journey of life??? Mostly just laying in bed, although I did get up and make blueberry muffins for breakfast with Isaac. I'm enjoying having all the kids home with me for summer. And they're taking care of the house and me. And I'm OK with that. For now, my job is to get better and to lovingly supervise the kids from my comfy bed:-) I also spend a lot of time in prayer and reading my Bible.

More tomorrow...I have an appointment then with Dr. Cohen....

Much Love,
Michele

Lupus is the gift that just keeps on giving....

Dear Friends,

I'm not kidding, I almost feel sorry for all of you who haven't faced death. Because you come away (that is if you don't kick the bucket) with a renewed sense of purpose. Pre-sickness, I used to be so busy, always doing something, and I think I lost sight of what was truly important. Now,my lupus has obviously slowed me way down. I take one day at a time on a good day. On a not so good day, it may be more like one hour, one minute, one second, or one step at a time. This is an important truth. None of us are guaranteed a tomorrow (at least not here on earth), so I choose to learn from the past, dream of the future, but live in the NOW. Because the NOW is what we have and where we're at.

So, what am I doing now, you may ask? I am laying in bed after finishing a family dinner lovingly made by Bill. I am thinking about our first day of summer vacation. And while I wish I could say I got dressed today, I did at least change into clean PJs this afternoon. My brain felt foggy, I felt tired and had a severe headache today. But I am a work in progress and like Paul, "I have learned to be content whatever the circumstances."

I also read Phil 4 today and focused on verses 6,7: "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding will guard your hearts and minds in Christ Jesus." I spend so much time in prayer, and I don't think "Well, prayer is ALL I can do." Instead, when I am laying in bed too sick to sleep, I pray. I pray because I trust that God can bring good out of the bad. And I believe the prayer is ALL and EVERYTHING I am meant to do right now.

When I was busy and in my pre-lupus life, I thought I needed to "do" so many things. Well today I came across this gem in my Bible. In John 6:29: "The work God wants you to do is this: Believe in the One he sent." Pretty simple isn't it? What does God want me to do? Believe in Jesus. I CAN DO THAT! And so can you if you choose to. Life is hard, but our God is so good...

Sorry, I'm feeling philosophical today -- but based on God's Word and my recent life lessons, here's my advice:

1. Live in the NOW. (Learn-don't have regrets-from the past, Dream-rather than
overplan - for the future.)
2. Be content no matter what the circumstance. (It's all about how you spin it.)
3. Do not be anxious, but take everything to God in prayer. Then do what he says.
4. Follow God's instruction, and believe in Jesus.
5. Fully commit your heart and life to God.

And remember as Mother Theresa said, "We are all pencils in the hand of God." He is writing our story...we are the instruments he uses. So try to keep in mind that God has the plan and we have a place in the plan. Spend less time trying to figure out the plan or telling God your better plan, and you may find it all goes better when you learn to trust him to have the plan.

And again, I say thank you God for lupus...it's refining my character and drawing me closer to you.

More tomorrow.
Much Love,
Michele

GOD'S DAY...

Hi Friends,

On a good note -- my day started out well, because my loving husband woke me and the kids up for church. It's amazing how fast 6 people can get ready. Bill woke us up around 10:15, and we were not too late for the 10:45 service...I love that our church is close and has a service for those of us who are late-risers:-) It was good to be able to worship God and I am always amazed that he can use me in whatever state I happen to be in.

After church, we had lunch at Carl's Jr. We utilized a bunch of coupons and ate for under $30, which is amazing for our family of 6. This afternoon we held a family meeting, did chores, hung around. I actually went for a walk with Molly and drove myself on an errand today -- so I was feeling pretty good about the day. And my drive in the truck was so nice, because Molly, Isaac, and Bill had just dejunked and vacuumed out the truck. I've never seen the inside so clean. Great Job:-)

I helped Bill (at least a little) make a nice dinner of linguini, salad, and cheese bread tonight. We let the kids watch it in front of a movie on TV. And Bill and I ate at the dining room table by candlelight. It was quite nice.

At present, all the kids are upstairs either sleeping or doing something "restful" in their rooms. Bill is watching a freaky movie. I'm going to take a bubble bath and relax in bed, knowing that tomorrow is the first official day of summer vacation. I can't wait!!! Nowhere that we have to be -- I LOVE IT!!!

More tomorrow...
Much Love,
Michele

A NEW DAY...

Hi Friends,

I'm not sure if today is better or I'm more joyful...but it is a new day. My new home nurse came this morning at 9:30 a.m. to do my port care. Unfortunately, she didn't have the correct supplies to do the draw/flush, so she then had to leave and come back. That was OK as it gave me time to take pain meds in anticipation of the large needle stick. She eventually came back. It wasn't the easiest stick -- she was at first able to flush it with saline, but couldn't get any blood. So, after some needle moving (always fun) and some heparin to break up any clotting -- we had success. Bill kindly held my hand and let me squeeze him really hard. Hopefully (if I have no complications) -- I can go another month before we have to do port care again.

I ended up going back to sleep for a while after that. I'm still headachy today and I seem to have caught a stomach bug from Bill. So, I was up during the night feeling pukey, as well. So, my goal of making it out to the land today -- did not happen. On a good note, Bill took the boys out there for a few hours. He is working on permits to change the zoning to residential. And he needed to go out and do some measurements. Of course, Nate, Isaac, and their friend, Matthew, jumped at the chance to come along. Molly and Cam (typical teenagers) decided to sleep in and stay home with me. They're currently making macaroni and cheese for a late lunch.

I think I'm going to go back to sleep and enjoy the quiet until they all get back. Here's hoping I can make it to church on Sunday.

Much Love,
Michele

SOME DAYS YOU CAN FIND JOY BY...

giving up on today, going to bed, and starting fresh tomorrow...

Dear Friends...

I feel crabby and unpleasant today...So, I'm going to end the day early and go to bed. Hoping tomorrow will be a better day. I feel a little bit like we live in a fishbowl in this "planned community" where our rental house is. I know it's temporary, but there are too many people on top of each other.

At least I figured out how to work the home nursing situation. My home nurse is coming tomorrow at 9:30 a.m. to draw labs and flush the port. But she isn't my same nurse, and she didn't sound very happy on the phone -- so I made Bill promise to protect me if she's mean.

Wish me luck...hoping to spend some time out at the land after that...feeling the need for wide open spaces:-)

Much Love,
Michele

BUSY WEDNESDAY, SLOWING DOWN THURSDAY...

Hi Friends,

I was really wiped out by the end of yesterday. It just seemed busier than I had planned -- got up at 6:45, took Cam to school; then came home and dealt with doctors, health insurances and services (never solving the problems); then picked up Cam from school; supervised the children and mothered many who weren't my own from the neighborhood (who were all having problems they needed to talk with a Mom-like figure about); helped Cameron with his history final project (which took hours); and ended the night feeding my kids plus three neighbor kids and taking them to church activities in the evening. Then we did a Bible study at church, delivered the kids back home, worked on finishing Cam's homework with him -- I fell asleep at 10:15, and I think there were still some children up. Somewhere in there, we did some learning with the homeschoolers and their household chores, too. Anyway, by the end of the night -- it was obvious that my lupus symptoms were flaring due to my day. I was tempted to say "I did too much today." But upon reflection, I decided it was a busy, productive day and I did what needed to be done. So, while I wish my body would let me do more -- I just have to take it easy today in order to recover a bit.

So, today Bill took Cam to school and stopped at a drive-through for breakfast. Tomorrow is grocery-shopping day for Bill, and it would seem the cupboards are bare. The homeschoolers and I slept in. And I got up by noon to make some sub sandwiches for lunch. Bill dropped Cam off at 1:30 and then headed back to work. My head is still killing me -- so I'm in my Pjs and moving very slowly. Annie called and offered to come over, so that will be nice. Bill is going to Poker Night tonight with some friends from work. So, Annie and I are going to go pick up Big Gulps and get something easy to feed the kids for dinner tonight. And it'll be nice to have another adult to hang out with for the evening -- even if we just lounge in bed and watch a movie.

On that note, I'm going to do my Bible reading and then get dressed before Annie gets here. Have a great day...more tomorrow...

Much Love,
Michele

HELLO AGAIN...

Hi Friends,

It's been a while since I last wrote, so I just wanted to check in for a few minutes. I've been feeling much better lately and even been regaining some stamina. The last two days I've gotten out of my PJs and dressed each day. And yesterday, I went for a short walk with Molly at the park.

Today, I woke up in the morning -- I know, not my usual schedule. But, Bill is going to be starting his Master's Program, so he had an early morning meeting at China Lake. Way to go, honey! And I felt like the best Mom/wife ever, because I actually managed to get up at 6:45 and take Cam to school. We stopped at McDonald's on the way, so I really rocked today:-)

After that, I came home and tried to sleep -- but was unsuccessful, because I ended up on the phone repeatedly with my doctor and the company that provides home nursing. The doctor has ordered home nursing for my blood draws and port care, and the company was questioning whether I was "sick enough." I don't know, maybe I should take that as a compliment -- but it seems you can't win, if you make an effort to get dressed, they feel you're not sick enough. So, from now on -- I'll try to look extra-pathetic while they're here and save my joyful attitude (which is definitely not due to great health) for when they're gone.

I went back at 12:30 to pick Cam up from school as he has half-days through Friday for finals. After coming home, the kids watched Toy Story (in preparation for the new movie). Then they did the chores and scattered. I just met Nate and Isaac's new friend, Mason's Mom. They are currently at the park playing with him and Matthew. Molly and Amber are hanging out together until we go to church tonight. And I'm off to "help" Cameron with his history final, which is a take-home test. I'm not sure how much help I'll be, but at least it's open-book.

More again soon! I promise!!!

Much Love,
Michele

FRIENDS...

Hi Friends,

I had the best day ever as I had a visit from two of my BFF's today. Shirlene and Annie both came to visit me today and we spent the whole day just talking and catching up. Shirlene brought her son, Brandon, along and my boys really enjoyed hanging out with him, too.

We left the kids at my house. Don't worry we brought them back Taco Bell. Shirlene, Annie, and I went out to BJ's for lunch. It was so nice to get out with my good friends and have some "girl time." After lunch, we picked up Cam from school to bring home. We then met Bill and drove out to the land to show it to our friends. We walked up to the site where our home will go. And then we just hung out for awhile and enjoyed the scenery and the wildlife on our 2 mountains. The boys went down to play by the creek.

We ended up staying until after 8. We stopped at Wendy's for dinner, and then everyone headed home, It was a wonderful day and I truly love my friends. We're going to try to get together more frequently this summer:-)

Now I'm off to bed...morning will come early and I can't sleep in because the cleaning ladies come on Friday morning!

Much Love,
Michele

JOY...

Hi Friends,

Today I am joyful because I choose to be. Joy isn't dependant on your circumstances...it's an attitude. I choose to be joyful by focusing on what I can do rather than what I can't do. I haven't blogged since Sunday, because I have been DOING a few things. Praise God!

On Monday I went out to the land with Bill, Molly, Nate, and Isaac. We spent the day there. Unfortunately, we had to leave Cameron at home so that he could work on some final projects for high school. Next Friday is his last day of school for the year.

We had a wonderful time at the land. Bill and Nate went down to the creek and observed some snakes. Then they managed to catch a very cute toad who we brought to the camp area to observe and hold before releasing him in the evening. I went on a small nature hike up to the future homesite. The view is beautiful and I was blown away by it once again. I also picked a bunch of wildflowers to bring home with us. Bill worked on clearing some more brush for the driveway. And Isaac helped with repairs on the trailer while Nate stayed busy cutting back trees in the driveway area.
We came home in the evening. As we left, we saw 3 beautiful deer on the side of "our mountain." Cam was done with his project and happy to see us when we returned home, especially since we came home with McDonald's for dinner.

Tuesday was my rest and recovery day after a Monday outside. We all slept in and then did any learning and chores in the afternoon. Today I had more energy again. My stamina is starting to come back after the chemo and my lupus symptoms are not too bad:-) So, today I was able to make a special delivery to Cam's school. He had a geography project and had to bring in a food from a different culture. So, I delivered brats with sauerkraut for him at school during his 6th period. Since that was last period, after delivering it -- I went and got a snack and then came back to pick him up. It's really nice to be able to do some driving again...I'm off the narcotics right now and so I feel safe driving again.

After bringing Cam home, I started doing a few things around the house when I was surprised by Bill coming home at 4:30...that never happens, so I knew something was up. He called us all outside to show us an RV that he bought. Yes, we already have a 5th wheel out on the land, but he got a really good deal on this one -- so now we have two campers to spread out in. I say kids in one, adults in the other. Although, Molly says boys should be in one, girls in the other. So, we'll see...I did tell Bill that two campers is enough, though. He can't buy another one unless he sells one of the two we already have. So, Bill had left his motorcycle where he bought the RV. I drove him to pick it up. Then we came home, had dinner, and went to church. We had a nice Bible study on Philippians and JOY. Gotta love it<3

We got home close to 9 p.m. Bill and the boys are still checking out the RV. I'm joyfully doing laundry -- 'cause it's a blessing to have the energy to do it. And my friend, Shirlene, called and might be coming with her son, Brandon, to visit tomorrow. I haven't seen her FOREVER, so that would be really great:-)

That's all for tonight...off to do a bit more laundry and then to bed. I've already taken my Ambien, so technically I'm on autopilot and probably won't remember this tomorrow. The joys of medicine. I wouldn't take it except Dr. Cohen insists that I sleep -- says it's necessary for my body's healing.

Much Love,
Michele