FIRST WEEK OF SCHOOL...

Hi Friends,

This week started out with me taking my megadose of methotrexate on Saturday. I'm now up to taking 6 at a time, next week I will go up to 8 at a time, and then it will be time for bloodwork. I am hoping for a cure, but for right now methotrexate isn't a ton of fun... makes me fatigued, sick to my stomach, and very dizzy. So, I take zofran and pain meds to counteract that and I rest a lot for the days following...

I've been filling my in-bed time with lots of fun things. The kids and I watch NetFlix movies, or they create characters on their on-line games for me. Then I watch while they play for me. My favorite game right now is KungFuPandaWorld. They made me a panda because Panda's are friendly and flowing. Anyway, it's a cute game and time well spent with the kids.

On Saturday Bill and the boys completely cleaned and organized the garage. It looks great. They also took a drive (just 1 mile down the road) to Twin Tigers Tae Kwon where they are hoping to take lessons. It looked good and they are going to check out a class on Wednesday. Since Nate and Isaac are homeschooled, I think it's important to have them involved in some quality activities/programs with other kids their age. Also, on Saturday my kids did what we call the home blessing hour (basically they do the weekly chores). It was really sweet to see. Isaac mops all the floors wearing soapy socks, Nate vacuums the sofa, and Cameron vacuums all the carpet. The boys also clean out the truck each week and put meds in their containers. Molly is a hard-working young lady -- she does all the laundry, changes the sheets on all beds, dusts, and brushes the cats. They have daily jobs they do too -- but this house is easier for us to keep on, and the floorplan and area all suit us better.

On Sunday Bill took Cam, Molly, and Nate to church and I stayed home with a sleepy Isaac. I was really feeling ill. It seems that for now it's - methotrexate side effects + the lupus/fibro pain. It would be nice if I started the dreamy remission and then the methotrexate would be worth it! We'll see. Anyway after church, Bill and the kids went grocery shopping and then made tacos for dinner. They were the bomb:-)

I stayed up way late last night (till 3 a.m) watching stuff on NetFlix. I've watched Tuesdays with Morrie several times. It's the first movie I've watched that explains what you learn about living when death is hovering so close at times. I really relate to the characters in that movie. And when I'm not watching that, I've been watching the last 2 years of Grey's Anatomy. I love that show and used to watch all the time, but I stopped when I was really sick. So, now it's nice to catch up...

Shockingly after staying up that late, I still managed to get up and drive myself to the dentist. My appointment went really well, considering I hadn't been to one for 2 years. I had no cavities and the bleeding was minimal with the cleaning. My platelets are low, and so there was concern that if there was too much bleeding, it might be hard to stop. And I have no cavities. I do, however,need to have some of my childhood silver fillings replaced. So, we can hopefully get that done in the next month before it's October when I am scheduled to do 2 cycles of Rituxan.

I came home from the dentist, and I went to sleep until about 1:30. Then I lay in bed with Nate and Isaac and watched Grey's Anatomy some more. I have the two of them sucked in, too! We made macaroni and cheese for lunch. After that, Nate asked me if I'd take him to check out the nearby skatepark. So, I did...it's so big, nice, and close. It's across the street from Channel Islands High School. I watched my skater dude do some awesome tricks and spectacular crashes. It was so much fun for both of us, and we stayed about an hour. We got home and just had time to do our daily 15's (household tasks assigned to different people) and then Bill was home to make dinner. I did a breathing treatment and rested a bit. And soon it was time for our Before Bed Routine. Since school starts on Wednesday, we started enforcing our 10 p.m. bedtime today. And we have a shower schedule from 8-10 p.m.,since they all like to shower at night.

Tomorrow looks busy, too with a dental appointment for Bill and Molly, and an orthodontist appointment for Molly, too. We also need to turn in some last minute paperwork at the highschool. And we're going to have Cam tour Molly around the campus so that she has some idea of where to go for her classes. And of course, the skatepark was so fun that I promised Nate and Isaac they could go on Tuesday.

As far as my health goes -- having a lot of trouble with my lungs,joints,nervous system, and again brain - which causes a severe headache and memory issues. So prayers are much appreciated. My outlook on life is good, and I have a great team of doctors - but I also have some serious problems. It's complicated to be me <3

More soon...
Much Love,
Shel

I'm oh-so tireddddd...

Hi Friends!

Apparently taking chemo meds on top of all the lupus meds and pain meds I'm already taken = complete exhaustion. All I want to do is sleep... I don't feel awful...my pain is well-controlled, just really really tired. I guess it makes sense that killing your immune system would tire your body out, right? So, for now I'm just going with it. I went to sleep last night at 10 p.m. and slept on and off until 2 p.m. today. And I'm still really tired. I just sent all 4 kids to the park down the street. Nate and Isaac need to get out and use up some energy...but I felt they needed babysitters and also, it wouldn't kill my teenagers to get out and get some fresh air. So this was my chance to hop on one of the computers -- which are usually occupied by children -- and let you know that I'm still doing well, just sleepy...

Bill comes home tomorrow. And we have a date night scheduled -- our sweet Alice gave us some free tickets to a movie tomorrow night. Another reason to rest up today as I want the energy to go to a movie and not fall asleep in the theater.

So I've decided that anything I thought needed to be done today ... can just wait until tomorrow. Luckily I have good kids who can take care of themselves and each other and life goes on... Isaac has been trying to chase down the ice cream truck for the past few days. Hopefully he'll have success today. And Itty Bitty Kitty spent the whole night outside last night after pushing one of the screens out of a window. I didn't notice when I closed the windows last night before bed. But today we heard the sounds of a meowing kitty on our front doorstep. She was very happy to be let in. She and Bo Bo had a long cat conversation about the experience, and Molly wrapped IBK in a blankie and babied her for hours after the whole traumatic experience...

Good Night...
Much Love,
Michele

I'M READY...

Hi Friends,

We have completely moved all of our stuff into the new rental house on Olive St. And now we're in the process of slowly unpacking the boxes. The kids all did their own rooms, and I did the master bedroom and bathrooms as well as the laundry room. Today Bill and I set up the dining room and yesterday we set up the whole kitchen. So, what's left is the living room, family room and hall way -- all of which are packed with boxes. And of course, we've got a ton of stuff in the garage which could use to be sorted through at some point. But we're making progress. And I hope to be pretty much settled into the house by Sept. 1st when school starts for the kids. This week Bill is going to Ft. Walton Beach, FL for a business trip -- so we'll see how much the kids and I get done without him here.

I started my newest "wonderdrug" and the last resort for lupus remission with an oral medicine. It's called methotrexate and is a chemotherapy drug that you take orally. In fact, I will take 8 pills (all at one time) once a week. After 13 rounds of chemotherapy and other torture treatments :-), I'd love to switch to a pill form that I could take long-term, so I'm ready and I'm hoping this works...Dr. Cohen says not to get my hopes up, though. Based on my response to all the other drugs of this type (Imuran, CellCept, etc.), he feels my chances of it working are "minimal." But it's worth a try while we're waiting for my next scheduled chemo in October. It has some major side effects -- but I didn't feel too bad after doing my first dose today...just dizzy and sick to my stomach. And I was prescribed Zofran, my drug of choice for nausea. I also have to take folic acid as it depletes your iron and I'm already anemic. And I'm starting trazadone for the fibromyalgia. So, I have a whole new medication regiment...just counted and I take 24 pills a day, except on Sunday when I do the methotrexate -- then I take 32. Not too bad, at one point I was taking almost 70 per day. Sadly, though, I can't drink any alcohol on the methotrexate...because it causes liver damage and mine is already damaged from the lupus. It's not like I'm a big drinker, but I do like the occasional margarita when I'm out with the girls or a shot of Jameson when I'm at home with Bill. Dr. Cohen told me I can have 4 alcoholic drinks per year. So, I guess I need to save those for special occasions.

So, have a drink for me when you want to. And I'd appreciate prayers that this new treatment will work. If you're not the praying type -- just send me happy thoughts. Bill and I prayed as I took the first dose, and we decided that it's about time for me to be cured. I've been sick for almost 3 years now. But ultimately I know that God has the plan, and that his strength is made perfect in my weakness. So, do I look forward to the illness or the treatment? No. But I'm more than just a lupus patient...I'm Michele, I'm a child of God, a wife, a mother, and my life has a purpose. I trust God to reveal it to me through my experiences one day, one hour, and sometimes one minute or one step at a time:-)

Now that I have internet...I will be back to blogging again. FaceBook is fun, but it's not the same as blogging. I feel like I can really get my thoughts and feelings out here, so it's good therapy for me. Also, I am able to let my friends and family know what is going on with my lupus and its treatment -- by sharing it one time for everyone to read at their convenience. And Bill linked the blog with FB, so my FB friends have the option of easily reading it, too.

Good Night! Or should I say Good Morning as it's past midnight. I took a very long nap after church today from about12:30-4:30, so I had too much energy in the evening. And I decided I better go with it while I had it. Because my energetic moments can be few and far between!

Much Love,
Michele

ALICE TO THE RESCUE...

Hi Friends,

Well...it's not like I meant to take a month off from blogging, but a lot has been going on. First of all, we're in the middle of a move. We didn't seem to fit in well to the "planned community" of RiverPark here in Oxnard -- or into townhouse life in general. So, since it will probably take about 3 years to do all the building out on our land (which Bill has termed "Rancho Suave" -- don't ask :-) we are moving into a more permananent but still temporary rental house closer to the kids' high school in Oxnard. I did the count and in our almost 20 years of marriage, this will be our 12th move...so hopefully the move out to the land will be our 13th and our last -- unless the kids have to drag us off to a nursing home at some point!!!

So, anyway right now we're in the midst of moving chaos. Bill and the kids (and Brandon, who stayed with us and helped for 3 weeks) have all the furniture and most of our stuff in the new house. All that we have left here are kitchen and bathroom stuff and our beds and a few boxes. We are planning to be into the next house this Sunday...and then we have until next Sunday to be completely out of this house and have it cleaned out.

As far as the lupus goes -- I haven't had the best month. I found it funny that my last blog entry was entitled "Uncooperative Kidneys," because they're still not being cooperative. If only my lupus would stop attacking my own organs. We all have to share one body -- Why can't we all just get along??? But for now that's not happening -- I did one course of Levaquin and the infection seemed to go away...but after 8 days it was back (or possibly never gone:-( So, I'm back on the Levaquin again -- and the infection is being really stubborn. Really hoping it goes away before this second course of oral antibiotics is done. Otherwise I will have to switch to IV antibiotics through the port...which isn't a pleasant thought -- as my port has been less than cooperative, too. Won't get into that today, though:-( I am seeing Dr. Cohen on Monday, so we can have the kidney chat then...as well as other discussions.

I went to UCLA with Bill on Wednesday to see Dr. Karpouzas, who is my head doctor and oversees my treatment plan. He is the Chief of Rheumatology at UCLA, and you can look at it in one of two ways. 1. You're pretty special if you get assigned to him. OR 2. You're really messed up if you get assigned to him. But seriously, he's a really great guy who's Greek -- very informed about this type of lupus and also very caring.

So, he really clarified what was going on for me. Basically I have the rarest form of lupus, because only 1% of all lupus patients have it affect the brain. All of you have very healthy hard brains, but I have a mushy brain, which leaks B cell subsets. The chemotherapy (Rituxan) we are currently doing penetrates my soft mushy brain, but it is just a short-term fix. That means we are basically just putting out the fire and my count goes up, but then the B cells deplete again and the lupus never goes into remission. Also, the Rituxan can only be done for 8 rounds (each round is 2times). This type of chemo is strong and I get a dose much higher than cancer patients. I've done 2 rounds of this type so far. So after 3 years -- I have yet to go into remission and that's what needs to happen.

And as he further explained -- 99% of the people with lupus affecting the brain respond to one of the treatments I've already had. So that's makes me 1% of the 1%, I guess...or as they like to say, "a very complicated case." Maybe one of my engineering friends can figure out the math. We've done Imuran and CellCept which are supposed to keep the lupus from attacking my brain and vital organs. No success. We did 9 rounds of Cytoxan (chemo) and only short-term success. We've also done tons of steroids both (orally and IV)and bunches of meds for the symptoms. So, apparently there is only one more oral drug to try -- methotrexate. And if that doesn't work, I'm out of options for now and will keep on doing the Rituxan until my 8 rounds are up. Instead of viewing it as my last option, I will remember that there are always new experimental drugs and studies coming out. Worse case scenario -- they can always do a stem cell transplant. Dr. Karpouzas also suggested a new drug Effexor for my fibromyalgia, so I'll probably try that too. It really is the least of my problems (fibro is another one of my many immune issues, but it is not life-threatening, just causes pain) --but Dr. Karpouzas has a lofty goal of keeping me pain-free.

As far as the current chemo goes -- I get to decide how often to do it. Ideally it would be done every 6 months. But right now it's been less than 3 1/2 months and my symptoms are already back. So, I could do it now, and I'd likely be in less pain and my nervous system would be better -- so I could drive and be more functional. But the problem with that is after chemo, I go from an overactive immune system (which attacks me) to no immune system (where I get pneumonia and all kind of infections that I can't fight off). Lucky me, they are letting me draw the line. So, I think I've decided to try the Methotrexate and hope it works while waiting until the regularly scheduled chemo in October. I'm on the highest dose of Percocet allowed for pain, but it's better than morphine or dilaudid which I've taken in the past. They would prescribe it if I want it, but I don't. I've been banned from driving after failing my neurological testing. Plus I don't like to take narcotics and drive. Safer for all of you other drivers on the road, but it's hard for me to lose that freedom. Luckily for me, Bill and Annie seem happy to cart me around. And while I am not able to physically do much around the house or get out much -- I am here for my kids. I believe that the most important thing I can do for my kids is to be here and love them...and I've learned how to do that from bed.

Now don't get me wrong...sometimes I still feel sorry for myself. For example, this morning I had dental appointments scheduled for me, Nate and Molly. It sounds silly, but I was determined to go even with my kidney infection because I haven't made it to the dentist for almost 2 years. And, I guess I just wanted to be like a "normal" person who could make dental appointments and take their kids (even if Bill was going to drop us off and pick us up). So, I got up this morning and got in the shower. The antibiotics make me very sick to my stomach and my kidneys were giving me serious back pain. After throwing up in the shower, it became painfully obvious even to oblivous me that I should not be sitting in a dental chair today. So I woke up my poor husband and he switched his morning meeting to afternoon and took the kids and stayed with them. And since he has an appointment with the same dentist in 2 weeks, he switched appointments with me. And maybe I'll be better then. Or not, we'll see. And today...Bill talked me down as I cried about not being able to go to the dentist. He very rationally told me that I shouldn't feel bad about having a disease. It is what it is. So, I snuggled back in with Isaac who was so cute in my bed with his favorite stuffed animal (a dog named Butterscotch), took some more Percocet, and spent the rest of the day in bed.

Because Bill spent the morning at the dentist with the kids, he worked until 7 p.m. He did call and ask if I wanted to go to a social with his coworkers after work. I laughed hysterically, because when he left he told me not to get out of bed.

And the story for today ends with me calling and sending a FaceBook S.O.S. to Annie, who we call Alice -- because she's the Alice to our Brady Bunch. I was feeling lonely hanging out in bed while moving went on around me...but life goes on. Like a true friend, she came not only to keep me company but with McDonald's for dinner. In fact, she even beat Bill home tonight. And she brought her laptop and wireless connection for me to do this blog on. Our internet is disconnected for the move...and I can do e-mail and FaceBook on my phone, but it's not the same as blogging for me. This serves as not only information for my friends and family -- but as a way for me to look back on my experiences in my loopy life. The mushy brain and narcotics don't help my memory much.

I think my movers have called it quits for the night. Molly and Annie are on a chocolate run, so I can't wait to see what they bring back. And Bill brought me a bottle of Jameson, which is always good. He actually stopped and got 2 big bottles of soda, too. Because you all know how much I love my soda. But sadly, the sodas fell off his motorcycle somewhere between the 99cents store and the liquor store. So, he learned his lesson and brought the liquor home in his jacket...I told him he was lucky he didn't cause an accident with the rolling soda bottles on the freeway OR get pulled over by a cop with Jameson in his jacket. Even though the bottle wasn't opened, it could have made for an interesting pat-down and discussion about how his sick wife needs her alcohol:-)

Annie is going to spend the night on one of our mattresses. We have great accomodations here. I'm leaving to eat chocolate and take more percocet. I will have internet at the new house as of the 20th, so I will get back to blogging then if not sooner. Thank you, thank you, thank you for all your prayers and good wishes. I love you all.

Shel