ALWAYS GIVE THANKS FOR EVERYTHING...

"Always give thanks for everything to our God and Father in the name of our Lord Jesus Christ." Eph. 5:20

Hi Friends,

While homeschooling today, this was our memory verse. It hit me that it's often easier to be thankful when life seems to be going your way. It can be more challenging to be thankful when life seems difficult at best! But this is God's Word and it seems to me that the two important words are -- ALWAYS and EVERYTHING! So, I do thank God for everything always whether it seems good or bad to me. Because as we established yesterday -- I'm just a silly little sheep who often doesn't know the whole plan!

So, the kids and I made lists of some things we're thankful for today. Thought you might like it if I shared:

Molly: "my friends, my family, myself, God, Jesus, Holy Spirit, my pets, Barbie dolls, reading, horseback riding, drawing, the rain, and spring...."

Nate: "my pets, my family, my friends, our house, the land, my cozy bed, the world, my MP3, my PS2, my Xbox, the Wii..."

Isaac: "my mom, my dad, Itty Bitty Kitty, BoBo, my bed, Bingo, my house, my Jesus, my friend, my laptop..."

Michele: "sleep and being able to wake up early this morning; housecleaners who not only clean my messy house, but pray for me when I'm in the hospital; Isaac snuggling under his blankie holding Snuggles his bear; warm blankets fresh from the dryer; Molly's beautiful braided hair and the sound of her reading out loud; Itty Bitty Kitty snuggling under the covers with me; Bo Bo trapped in my closet and meowing for release; a mountain man for a husband; Nate's chocolate face after eating donuts that Bill brought home; a nice,knowledgable new Home Healthcare Nurse arriving today; and Finally -- We're all home together and safe for the weekend with a soft rain falling outside!!!"

So, it's only 4:30 and I already have so much to be thankful for. It's an interesting exercise in perspective. Focus on the good and be thankful for everything -- even the bad. It's God's plan, not mine...thank goodness, 'cause I'd likely mess it up :-0

I was up early this morning -- still not getting much sleep. Cameron is awfully surprised to see me each morning at 6:45 when he gets up. In the past, I would have still been sleeping. Today the cleaners came at 9:30 a.m., and they were so glad to see me. We have a slight communication barrier (English-Spanish), but Molly told me last week they asked about me, and then stopped to pray together for my health before starting to clean.

I took advantage of my early morning energy by homeschooling. With Bill's help (it was his day off), we were done by 1 p.m. At that point, my new nurse came by and stayed for about an hour getting my history and doing intake. She's great and will be a good match for me with previous experience in neurology and pain management. She'll be back on Monday to change my PICC line dressing and draw blood, so that the doctors have it by Wednesday when they need to make their "Grand Plans" for me. Other than that, no interesting news. My vitals were OK, not great -- but OK. Still having problems with my lungs -- very decreased on the left side especially. Oh well, who really needs 2 lungs? I'm sure they'll figure something out!

Bill had a doctor's appointment today, and they upped his meds for his Parkinson's. We're quite a pair! After that he picked up Cam from school and they stopped at SpudNuts and brought us all donuts home for an after-school snack. The weather is rainy outside right now! And I guess traffic was crazy here in the usually sunny California!

I'm just laying here in my pjs and resting in bed. I have no other plans for the night. More tomorrow...

Much Love,
Michele

A LOVE LETTER TO GOD FROM ONE OF HIS SHEEP!!!

"Suppose one of you has a hundred sheep and loses one of them. Does he not leave the ninety-nine in the open country and go after the lost sheep until he finds it? And when he finds it, he joyfully puts it on his shoulders and goes home. Then, he calls his friends and neighbors together and says, 'Rejoice with me; I have found my lost sheep.'" Luke 15:4-6

Hi Friends!

I woke up this morning scared. I got some sleep last night, but had to get up 4 times over 10 hours to take Dilaudid. I'm allowed to take 4 mg every 4 hours, with 2 mg every 2 hours for break-through pain. The mega-pain killer took the edge off and helped me sleep -- but I woke up in such severe pain from the lupus. My head and chest hurt so much. It's literally like I can feel my own immune system attacking and damaging my brain, heart, and lungs. ICKY!!! I know. I started my day with prayer and a new devotional that Mom and Dad Bland (Thank you, thank you, thank you!!!) sent us for Christmas. I told God how scared I was and how I was struggling with feeling out of control.

As always, God answers prayers. The Bible verse above was the one I read today. And the devotional reminded me that God's heart is full of joy because of me. He celebrates over me today. He delights in me and is so glad that I'm home. After that quiet time with God, I was able to tell Him that I fully rely on Him and trust in Him. I rejoice that the King of All, rejoices in little, whiney me. I don't understand (or even like, to be honest!) all the plans He has for me. But I trust and know that God will give me the courage and protection I need to weather any storm.

And life went on... we homeschooled... we did chores... Cam and Bill came home... Nate and Isaac are at the park with Matthew... Molly is horseback riding with Amber.

I made it one more day. At this point that is an accomplishment. I am determined not to take the Dilaudid during the day -- I need to be a functional Mom. But the pain is getting bad, and I'm almost through the day. Soon, I can have that relief again.

I'll sign my love letter to God and you...

Much Love,
A lost (and found) little sheep

DILAUDID ON BOARD!!!

Hi Again!
Quick update -- restarted dilaudid -- major opiate drug, 8-10 more times more powerful than morphine. But it's helping, took my pain level from 10/10 to 4/10. I can live with that at least for a bit. Also took my Ambien and hoping to get some sleep tonight.
Love,
Shel

"ROID RAGE!!!"

Hi Friends,

This will be short as I feel really bad. I must be bipolar or on steroids! One day I'm up, the next day, I'm down. Last night my blood pressure and heart rate spiked, and even with the meds prescribed to fix that -- I ended up not able to sleep all night. Basically -- slept from 7 a.m.-11a.m. this morning, at which point I really needed to get up and help the kids with their schooling.

I spent a large part of today dealing with medical/insurance red tape. Finally, got home health care nursing set up again. And the insurance can be a real pain when it comes to covering the chemo and other necessary treatments. Then, I discovered, my hospital discharge instructions were all messed up! I was supposed to have several prescriptions for pain medications that I never received. So, after another conference call with Dr. Cohen -- Bill was dispatched to Thousand Oaks to pick up prescriptions -- since the meds are opiates for pain, they cannot be called or faxed, etc. (It's not like he has a job or anything! and I keep thinking I'm too sick to deal with all of this!) Hopefully, I will get some pain relief and sleep tonight, and be able to hang in there until Wednesday -- "Oh, lovely and fun-filled day at UCLA!"

The younger kids got their schoolwork done and played with friends when they finished. Molly is excited because she's been invited to go to her friend, Amber's horseback riding lesson with her tomorrow. We'll get some info on it and see if it's something she may want to do!

Cameron had an early-out day and was done with school one hour earlier than usual. So, that seemed a bit odd. Other than that -- we just had dinner and rented "Cloudy with a Chance of Meatballs" for the kids to watch as it came out on PPV yesterday.

Much Love,
Michele

"TO GET THROUGH THE HARDEST JOURNEY..."

"WE NEED ONLY TAKE ONE STEP AT A TIME, BUT WE MUST KEEP ON STEPPING." -- CHINESE PROVERB

Hi Friends,

I know I've used this quote before, but once again I find myself in this place. Yesterday, I hid out in my bedroom, but today the heavy-duty meds have kicked in and the steroids are giving me energy. So, once again, I'm ready to fake it until I make it. I think I just needed some time to adjust to the most recent rounds of bad news from the doctors. But I'm OK again, and I need to trust God with my life and know that he will give me the grace needed to thrive in this storm.

So, I told Bill, "Let's be normal for the next 10 days until we meet with the doctors to schedule chemo!" Or, I guess -- as normal as we can be. I've always believed that normal is just a setting on your dryer :-) I sent him and Cam off to work and school this morning. And he is picking up Cameron after school each day and bringing him home to me. I'm not allowed to drive or do much fun stuff on the new meds. This morning, I took 19 pills for breakfast, and the kids helped me fill my med container for the week. I'm back up to almost 70 pills daily. Nate was upset for me, but I told him we should just be glad that there are meds to help me!

The homeschoolers and I had a good day. We got a lot of chores and schoolwork done. Right now, Nate and Isaac, and Molly are all playing at their friends' houses. Cameron is doing homework for sociology class -- he has to watch a TV show and document all the commercials and their target audiences. It's pretty funny! Especially, when they were advertising for a study for lack of sex drive in menopausal women. My poor, autistic 16 year old was mortified.

I'm drinking sparkling water like crazy, because the steroids make me so hungry. And tonight I'm determined to do some Wii Fit Yoga. Gotta love video game workouts! But at least it's something besides laying in a hospital bed.

Bill made chicken tortilla soup in the crock pot and it's bubbling away. He should be home around 6:30-7. The kids are all due at home at 6 p.m.

Life is good. God is great! I love you all!

Much Love,
Michele

LUPUS STILL BITES :-(

Hi Friends!

I talked with Dr. Cohen this afternoon, and while I LOVE my doctor -- I'm hating the aftercare instructions and still thinking lupus bites! He wants me back up to 60 mg. of Prednisone daily -- if you've never been on steroids, just imagine a medicine that makes you puffy, hungry, crazy, and emotional. Can you say fun? I also need to start CellCept, which we've been talking about for a while. Patients with organ transplants take it to prevent organ rejection. It's also used in lupus patients like me to keep us from rejecting (or attacking) our own organs. I'll probably have to add back most of the meds I stopped, too -- due to the effects of the Prednisone.

We set up Home Health Care to keep my PICC line clean, and they will draw blood weekly. And, like I thought we'll try and wait to start chemo again until Feb. 10th when I see Dr. Karpouzas (chief rheumatologist at UCLA) and Dr. Cohen. Together they will make the new plan, Stan. But Dr. Cohen said it was a bad sign that my headache and chest pain came back after the hospital stay.

So, again -- it is what it is... Thanks for all the prayers!
Much Love,
Michele

FIRST DAY AT HOME !!!

Hi Friends!

After getting home from the hospital yesterday, I hugged my kids and went to sleep for a very long time in my own bed. I had probably only slept a total of 4 hours in the 3 days/nights spent at Los Robles! The steroids make you hyper, but in a bad way! So, I slept until 1o p.m. when Bill woke me up for meds. And I ate a bunch of food. Again, you have to love the steroid hunger, too! So, after a healthy nighttime snack of chocolate cereal and nachos, I went back to bed. Isaac missed me a lot, and soon he was sleeping in the bed between Bill and me.

I didn't hear a thing all night until Cameron (our responsible high-schooler) arrived in our bedroom at 7:15 this morning to tell Bill it was time to take him to school. Bill took the day off of work to care for me, and he is currently homeschooling Molly, Nate, and Isaac. I am taking the day off and hiding in my dark room, waiting for aftercare instructions from Dr. Cohen.

To be honest, I felt a lot better in the hospital. It was probably just the pain meds and steroids making me high -- I guess. Today my chest and head are killing me again! It is what it is! I feel blessed to have a supportive group of friends and family to get me through this, but it does get tiresome! Sometimes I just want to be the old me again!

So far, this is what I know -- I need to have a port put in surgically, and I need to schedule the next two rounds of Rituxan. I was supposed to do 2 rounds every 6 months for the next 2 years, but unfortunately the last rounds only lasted 3-4 months. (I have no idea why the font just changed -- but I'm too tired to deal with it!)

On a funny note (kind of!), my children wonder how long I will live with all of these health problems. Isaac asked me if I could live until he's "an old man," because he'll need me until then. In further discussion, he clarified that he needs me until he's 30 years old -- so here's hoping that I can keep these organs workable for at least 23 more years!

Going back to sleep...
Much Love,
Michele