GOOD NIGHT, SLEEP TIGHT...

Hi Friends ...

I'm on my way to bed. Do you like the jammies? Annie surprised me and Molly with new PJs today! She's such a sweetie! I'm not sure if you can tell from the pictures, but mine have flowers and Molly's have cats. They're comfortable and roomy, and I do spend a lot of time in my pajamas these days. So, you can never have too many!

Yes, I know it's late, but time got away from me. Still no word on the home selling/buying front. Bill is in charge of working with the loan people, and today they seemed more agreeable to letting us go ahead and sell this house. So, hopefully a final decision will be made tomorrow. The good news is that we have a seller if we want to sell, and we seem to have a renter if we choose to rent it out. But, like I said yesterday, it's the not knowing that drives me CRAZY!!! Looks like we won't be out of here either way, though, until September, which gives us a bit more breathing room. And if we make a decision soon, Cam could always commute to his new school with Bill when he goes to work -- that is, until we actually make the move.

Heather and Will were over for much of the day today, because Judi had to take Justin to register for high school. He will be a freshman this year at Royal. The kids all had a good time, mostly playing with legos (boys), Barbies (girls), and swimming.

I worked on Mt. Washmore today, which had again gotten out of hand. I knew it was bad when several people mentioned they were out of underwear and other essentials:-) So, that was the main project for the day. I also worked on tidying up the kitchen, ordered groceries online, and made peanut butter cookies (with the kids) for our Bible Study tonight. We had our Heaven group tonight, which Bill leads. Annie made my day by ordering pizza tonight for dinner. She arrived at 6 p.m., and I was "on my last spoon." (See yesterday's spoon blog if you don't understand!) I had an hour before Bible study and had time to do one thing so, I was contemplating whether to make dinner (for the hungry family) or order groceries (important -- as we're almost out of milk, TP, and many staples). I knew I wouldn't be able to fit in or have the energy for a real-life grocery shop. And, I love my husband, but bargain-shopping is not is specialty. He seems to come home $400 later, but missing most of the essentials. (Here's hoping he's not reading this!) So, anyway Annie treated us to pizza for supper and I ordered groceries, and we managed to get both accomplished before people started arriving at our house.

Bill went to bed shortly after the Bible study as he has an early morning meeting for work. He says he needs to get up at 5 a.m. I'm glad someone is willing to work and provide for us!!! The kids and I dawdled for a while watching TV and then they slowly went to bed, too. The schoolyear is going to be a big adjustment for all of us. Although, I was teasing Bill that homeschool hours might be from 12 -8 p.m. Just kidding!!

Tomorrow, I have the groceries coming, and we'll need to put away all the items from Mt. Washmore. Annie and I are planning to take Molly shopping at JC Penney's for her dress for Sandy's Bat Mitzvah. Sandy is a good friend of Molly's who is Jewish, so this will be a great learning opportunity as she is invited to the synagogue and the reception afterwards. The Bat Mitzvah is Saturday, August 22nd. So, since I have chemo on Monday I want to help her get a beautiful dress before then. And we may do some general back-to-school shopping for her, too. It's traditional for me to take one child at a time clothes/school supply shopping in August. And I find that the traditions are important to keep up during a health crisis, as they keep the children feeling like everything is normal -- or as normal as possible. Also, while shopping tomorrow -- I want to buy something cute for Dr. Cohen's new baby girl. I am still planning to give her the baby quilt when I finish that, but who knows how long that will take?!

Last night when I was up late (as usual) I ordered a Bat Mitzvah gift for Sandy online, and it's really cool. Right now in Israel there is a lady making a handmade bracelet for her. It is braided blue leather with 2 gold charms on it. One is the star of David, and the other is a Hamas. A Hamas looks like a hand with an eye in the palm of it. It is symbolic for (the eye) protection from evil, and (the 5 fingers) worshipping God with all of your senses. I was impressed with myself and my Jewish friend (Shirlene) told me that I did well for a Gentile.

Shirlene called today, and she is planning to go to chemo with me on Monday. So, it will be fun -- or as fun as chemo can be. When Annie and Shirlene both go, we call it a "chemo party!" They're both going with me to my appointment to Dr. Cohen's before, too. I'm really blessed to have such a supportive family around here!

Did I mention that Isaac threw up tonight? Right during Bible study. He came down and told me he was sick to his stomach, and then ran to the bathroom and puked. I hope he just ate too much pizza, but with Cam throwing up yesterday -- I am concerned we may have a virus making the rounds. Just what I need days before chemo! I ordered extra Lysol with the groceries and am planning to spray down the house after it comes tomorrow. Maybe I should spray down the kids, too. Just kidding, I think that would be considered abusive even if it's for my health and safety!

Well, I'm really going to sign off and go to sleep now. Bill would have a cow if he knew I was still up. But even with my sleeping pills, I have a hard time falling asleep while considering the housing situation. On a good note, it gives me lots of time to pray.

And as I was reminded today when opening my Bible: "Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble." Matthew 6:34

Much Love,

Michele

NOW, FOR MY REAL POST ....

Hi Friends,

Well, it's been quite a week. We THOUGHT we sold the house and were done negotiating, but we're running into some glitches. We were happy selling the house and just breaking even. However, as we look into getting a mortgage to buy a new one, we find our loan will go through easier if we rent out the house and continue to build equity. So, luckily we hadn't accepted the final, final offer yet. We're talking more with our loan officer and seriously considering renting out this house instead. Conveniently, our neighbors (who are renting) would be happy to rent this house, so we already have an interested party. I am just really not sure about how I feel about owning 2 houses. Financially, it makes sense, but as far as making our life easier -- not so much! And now we're back to square one -- so the stress of not knowing what's happening is challenging for me. I was about to start packing, then I received this bit of news, and so now we've put that on hold until we know definitely what we're going to do. Meanwhile, I'll keep praying, taking my Xanax, and today Annie brought us over mini-bottles of Jameson whiskey, since she heard I like it so much. And when I know something -- you'll hear it on the blog first!

Other than that, it's been a busy week. On Monday, we had a potluck at our house for the Chronic Illness small group. That was fun -- they're a lively group for a bunch of sicklies! That was in the evening, so the kids and I spent the day picking up the house and making dessert -- we made tons of snickerdoodles and cupcakes of all varieties with sprinkles.

All week I haven't been feeling well -- very fatigued and whenever I'm on my feet or even sit without my feet up, they swell. So, Tuesday was taken up by the cleaners coming. It took all my energy just to get up and wash the sheets so that when they came in the afternoon, they could change the beds with fresh linens. We also had Will and Heather spend the night on Tuesday night to everyone's delight.

Today, I spent ALL day filling out my disability forms online. It took over 5 hours to do as they are very detailed. We are hoping that the disability and supplemental insurance (through the federal government) may help us with our medical copays as well as all the extras (like housecleaners) who cover things I used to be able to do. I was still in my PJs at 5 p.m., but I had finally submitted the forms on-line, so I was pleased with myself! I was hoping to do laundry today, too -- as we're almost out, but that will just have to wait until tomorrow. I was content with finishing the forms, taking a shower, and tidying up the house with the kids before dinner. Oh, and did I mention -- Cameron had a severe migraine and was puking all day. He seems better now. But at first I couldn't figure out what type of illness he had. There was puke everywhere and he had to clean it up himself, because I can't touch germs with my zero immune system! (I think Cameron probably got the migraine because of the stress of our possible, maybe moving situation :-) My angel and the kids' fairy godmother -- yes, of course I'm talking about Annie (Alice) showed up with McDonald's and Big Gulps for dinner. Bill had Men's Group tonight.

I am off to bed soon. Hopefully, I'll get back to the blogging again this week. I've just been so tired, overwhelmed, in pain, and life has been ... well... so complicated! But as always, I'll give it to God!

Much Love,

Michele

I'M OUT OF SPOONS ...

Hi Friends ...

I want to share this story with you, so that you know what I mean and how I'm feeling today. Please read the Spoon Theory, written by a fellow lupus sufferer at and copyright by Christine Miserandino.

Much Love,
Michele

___________________________________________________________________


My best friend and I were in the diner, talking. As usual, it was very late and we were eathing French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have lupus and be sick. I was shocked not only because she asked the random question, but also becaus I assumed she knew all there was to know about lupus. She came to the doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to rambled on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my rommate in college and friend for years; I thought she already knew the medical definition of lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least to stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I ecplain every detail of every day being affected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand. If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell, I grabbed spoons off of the other tables. I looked at her in the eyes and said, "Here you go, you have Lupus." She looked at me slightly confused, as anyone would when they are being handed a bouquet of sppons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is to make choices or to consciously think about things when the rest of the world doesn't have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of the life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case lupus, being in control.

She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn't guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disapoointed, and we hadn't even started yet. I've wanted more "spoons" for years and haven't found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said "No! You don't just get up. You have to crack open your eyes, and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don't, you can't take your medicine, and if you don't take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn't even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn't want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all of this.

I think she was starting to understand when she theoretically didn't even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are done, they are gone. Sometimes you can borrow against tomorrow's "spoons", but just think how hard tomorrow will be with less "spoons." I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number or things that could be very dangerous. So you do not want to run low on "spoons," because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. Shw was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn't have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I aslo explained, that I didn't even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, because it was easy. I then said that it is only 7 p.m., so you can do something fun, or clean your apartment, or do chores, but you can't do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think finally maybe someone undersood me a little bit. She had tears in her eyes and asked quietly, "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse than others; some days I have more spoons than most. But I can never make it go away and I can't forget about it. I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply,"I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared."

It's hard, the hardest thing I ever had to learn is to slow down and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so esay, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons."

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don't have room for wasted time, or wasted "spoons" and I chose to spend time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently, too. I think it isn't just good for understanding lupus, but anyone dealing with any disability or illness. Hopefully, they don't take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become and inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my spoons."

SUNDAY

Hi Friends!

I don't know where my Sunday has gone! Our church is now offering an 11 a.m. service, so we tried that this morning. It was a challenge for me to get up by 10 a.m., but I managed. I need to talk again with Dr. Cohen about my stamina. Last time he offered me Ritalin or a steroid to help counteract the effects of my chemo/lupus -- but I elected not to do it. During the summer, it's not a big deal if I sleep ALL the time. But since I'll be homeschooling again starting in September -- I will need to be able to stay awake!

Anyway, I went to church. Then we came home and had lunch. At 2 p.m., I went to my quilting class at Carrie's house. Molly is making a quilt, too, so she came along. We stopped at JoAnn's to buy some last-minute supplies. I felt like I was back in college cramming for a final -- because an hour before the class, I was attempting to iron my fabric and buying a cutting board and other needed supplies. Bill drove us over to Carrie's -- I'm still taking a lot of Vicodin for my headaches, so depending on when it's taken -- I don't always feel safe driving.

We stayed at Carrie's until almost 5 p.m., and with Molly's help (I don't have the strength for cutting), we managed to cut 50 quilt squares. At this rate -- my quilt may not be done until Dr. Cohen's baby is a toddler! But, Bill pointed out that what's important is that I'm having fun/fellowship with friends!

Bill picked up a bunch of boxes today from a fellow Freecycler! So, the price was right -- FREE! This week I will try to do some packing with the kids. I have one week before Round #9 of chemo. Chemo is on the 17th, and we need to be out of this house by the 24th -- it usually takes me 7 days to come back to life after chemo :-) So, good news is -- I'll be good in time for the move, but the bad news is -- I won't be much help for the whole week before the move. Poor Bill!

But, as always -- I am going to trust God to provide! And I'm sure it will all turn out in the end! I'll just try not to worry about the details! God knows the plan, it's just my job to follow it -- not to question/complain about it!

Much Love,
Michele

P.S. -- The story about the boys' trip to Gorman is that after Isaac puked late in the evening -- Nate and Isaac both concurred they were homesick and just wanted to come home. So, Bill obliged.

A NIGHT OUT WITH THE TEENAGERS!!!

Hi Friends!

I decided to make up for not posting yesterday by posting twice today. I told Bill to take the camera with him and the boys -- they left for camping/motorcycle riding this afternoon. But apparently, he forgot and so I decided to take it with me while I went out with the older kids tonight. Most of my blog readers tell me they value the pictures most of all -- so I'll try to oblige. It makes sense since we're so so far away from many family and friends!

The good news is that tonight I went to a movies -- and I'm proud to announce: For the first time in 2 years, I didn't fall asleep in the movie theater. I planned ahead and took a 2 hour nap before leaving. Then this evening, at about 6 p.m., Cam, Molly, and I went out for dinner at McDonald's. Afterwards we went to the $3 movie theater to see Night at the Museum 2, which we REALLY enjoyed. And then we headed back to McDonald's (Don't worry -- it's right by the Movies) to have an ice cream snack. All in all, we had a great time! It was nice to spend time alone with the two older kids and really get to talk with them. I think that I'm a much better Mom since I got sick as I tend to focus on what's really important ( e.g. - time with the kids). In the past (pre-lupus), I think I got bogged down with the details of life.

The kids are now happily playing games that they bought at GameStop earlier today with their allowance money. Nate was even thrilled on his way to go camping, because Bill hooked up his X-box (which he bought from John next door -- it's an older model!) to the DVD player in our SUV. So, he was able to play the new games he bought with his allowance on the trip to Gorman. I received a call from Bill. They were planning to go to Alamo Mountain, but it was closed. (Not sure of the details?) So, instead they were going to Gorman. Bill sounded happy and said they were going to have a great time. That was an improvement as Bill was stressed out when leaving!

Update: Bill and the boys just showed up! Isaac puked. They decided to come home after a day of riding. So, I'm going to get the boys in the bathtub and then to bed. I'll update you more tomorrow.

Much Love,

Michele

SATURDAY!!!

Hi Friends!

Do you like the pictures? Cameron is proudly wearing the shirt we brought back from Wisconsin for him. I've already had to wash it twice this week, but I'm just glad that he likes it so much. Also, thought I'd include photos of the sign the kids made/posted on my door, so that nobody bothers me when I'm resting. I feel very blessed to be taken care of so well by my family :0)

I didn't get a chance to blog yesterday. I guess I overdid it with all my housework and Mt. Washmore since I got back from Wisconsin. So, yesterday I felt really exhausted. I spent a large part of the day in bed, and I seemed to finally get it together by around 2:30 p.m. It was Bill's day off of work (he works longer hours and as a result has every other Friday off), so he was home for the day, but busy working on all the closing paperwork for this house. The kids were content to hang out around the house for most of the day. We ended up with all of the neighborhood kids over -- at least it seemed like it, to me -- for biking and swimming.

I had long talks with Annie, Judi, and Shirlene yesterday -- who are all concerned about our move. But ultimately they support us and know that this is the right time for us to move. I am a little concerned about the fact that we will be homeless in about 2 weeks until we decide what to do permanently. But in my prayers today, God reminded me that He knows the plan and that it will be something good. So, I will trust in Him while Bill and I do our part! Ultimately, it will be a blessing for us as a family to be much closer to Bill's work. It's just a matter of settling on where we want to be both temporarily and permanently.

Today, Bill is taking Nate and Isaac on an overnight camping trip for motorcycle riding. The timing may not be the best (as we really should be packing), but they've been looking forward to it all summer -- so we decided to go forward with it anyway. They're packing up now, and they will come back tomorrow. That leaves me with Cam and Molly, so maybe we'll go out to see a movie and have dinner tonight. I also want to go to church as I haven't made it there for TOO long due to chemo/general sickness!

Brandon is here for the day. He and John (next-door neighbor) and Nate just got back from a bike ride to 7-11. I'm a bit jealous, but I didn't think they'd be able to carry a Big Gulp home for me.

I'll blog more tomorrow. I asked Bill to take a camera on the Boys' trip, so that they could bring pictures back.

Much Love,

Michele

WE SOLD OUR HOUSE!!!

Hi Friends!

This may be a surprise for some of you. Our house has been up for sale for the past month, and we have sold it. We will have the closing on August 24th, and we need to be out by then. So, we will be looking for a home closer to Bill's work. We may need to look for temporary housing in the meantime. Since the market is still somewhat soft, we wanted to sell before buying something else. Anyway, the timing is good -- because the kids will not have started school yet. It was scheduled to start in Simi on the 26th. Cameron will be the only one to switch schools. Molly has elected to homeschool again with the other boys since we'll be changing school districts. She would've had to start a new middle school and only be there for a year. So, she will homeschool for 8th grade, and then start high school in public school for 9th grade next year.

Other than the house negotiations being finalized today -- it's been business as usual around here. I slept in until around noon. When I woke up I had a houseful of kids. Brandon was here as well as all of Judi's kids (she had physical therapy) and John from next door. They all had a lot of fun just playing around -- being kids-- and swimming.

I did more laundry and housework, and then tonight we had our Heaven Bible study group. Will and Heather are spending the night tonight and the kids are all still up. Molly and Heather are camped out in the family room watching a Barbie movie. And Cameron is entertaining Will, Isaac, and Nate with JibJab on the computer.

I am off to bed... More tomorrow... I guess I'd better start packing. I only have a week to get some serious packing done before chemo on the 17th. Bill is going to take some time off of work, though, to help. And we have the kids to help, of course!!!

Much Love,
Michele