My Bucket List

Zoe is making a list of things she wants to do before she turns 40. Since I am already 42, I have been thinking about things I would like to do before I die. You know, the Bucket List.

I would love to travel and see:
Ireland and Rome for sure.
Maybe Egypt, Ethopia, and China.

Lose weight and fit into a gorgeous, yet simple, wedding dress.

Have a wedding that I never had.

Have a honeymoon that I never had.

Have a wedding ring with more than a quarter carat diamond. (Yes, bury me in that sucker! I want a diamond ring, dammit!)

Dance with my husband in public. (we have never, ever danced together except goofing around at home)

Swim with a dolphin or two.

I'd love to work for a day in a zoo and handle all the animals. Especially the gorillas. I love animals.

That's it I think. I might think of more and add them later, but honestly I cannot think of anything else. My life is almost (almost) perfect. I love having my children home all day long. They grow up so fast that I am grateful for this short time I have with them. Olaf makes a decent living and we don't have any pressing needs... Life is good! (Olaf if you are reading this, do not buy me a diamond ring without my approval!)

Oh Lush, how I love you!

Thanks to my friend, Zoe, in England, I love Lush Products. The Karma scent is so hippy; so ME! I visited a Lush Store in Soho when I was there in August and bought the Ultra Bland Cream to take off my eye make up. ::swoons:: It works so well and is go gentle. And you see that spray bottle of Rose Water? After you wipe off your eye make up, you spray that rose water on a cotton round and swipe your eyes for a nice clean feeling. Obviously I love them so much that I took a picture of them in my filthy bathroom to show you!

Camille and I are leaving Friday night for the Big Apple. We are supposed to come home Sunday, but the only flight that is open leaves at 6:00 am. We'll see... I am excited about taking her to see Wicked. Broadway is such an awesome experience. I plan to take each of the children to a show when they hit 13ish. When we lived in New York we saw The Phantom of the Opera and it was fantastic. I saw WIcked in August and it was so fun. Look for pictures on Facebook.

Is it possible to have a twin?

Because Molly is mine. She wrote this post and it is ME! So pretend I wrote it and just read:

How does a person know that he/she is walking in truth? I was considering this today, considering the various “truths” I once held versus those beliefs from the past that are actually still with me today. What is a key difference between the not-actually-truths and the things that turned out, as far as I can tell, to be just as true now as they were then? I remembered the words of Christ about truth, and nodded my head. Truth and freedom really do go together.

One common denominator in my experience in fundamentalism/legalism was the shrinking down of the world, the tightening of the borders, the closing in of the box. Sure, there were a lot of vocabulary words that indicated freedom, but in actual practice, it was a lot more like hiding behind a little wall, fearful, shaking, waiting for this world to be over with already. Choices? Questions? Not okay, except for those that fit into the prescribed grid. Have others had a different experience in fundamentalist/legalist/conservative circles? Probably so. But this was mine.

One common denominator in my (forced? chosen?) exodus from that tight safe-feeling place has been the sense of liberation, the feeling of stepping into a wide world, a world full of options, full of choices, a world full of opportunities.

I recently heard someone (Where? Anyone else here this and remember who said it?) quote a new study revealing that human beings, if forced to choose between pain or the unknown, will almost always choose pain. With pain, at least we know what to expect. With the unknown, that’s just the point—we don’t. So, according to the research, if you’ll give me the choice between pain and the unknown, you can know ahead of time which one I’ll pick: let me have the pain I know. Is this the reason so many stay? Is this the reason that leaving what we know is so hard, because leaving the known pain means facing the unknown?

These last four or five years have had two huge paradigm-shifting crashes for me. The first was my spiritual world. That was a slow but steady turning over of everything, until critical mass was reached and I realized I no longer fit within the walls of the conservative evangelical/fundamentalist world. There was not a lot of joy in that crash. I remember much fear, pain, panic. ”Where will I go from here? Where is here, to begin with?”

So when it came crashing down, helped by painful circumstances that were a little more painful than the paradigm was capable of bearing, it was a blow I wasn’t sure I could recover from.

And as I was still scratching my head and figuring out which way was up, slowly trying to make sense of the big wide new world I found myself in, the second crash began, born of the earlier mentioned painful circumstances that helped, in part, to cause the first one.

The first crash was mostly philosophical/theological. The second was very practical, very earthy. It involved losing a part of my most precious possession in all the world: my hopes and dreams, family-wise, for my wacky wiggly beyond-loved children. When the vision of what-might-be finally gasped its last, no doubt kept alive for so long only by my valiant and often humiliating attempts to Make It Work (It Has To Work!), it was no different from a death. It felt no different from a death. In many ways, I think it always will.

So two huge life-changing things happened, like a huge steam roller crushing its way along The Way Things Are, and that is why I nodded my head when I heard the research that says we prefer pain over the unknown. The pain of what I know is something that I might not like, sure, but at least I know how to survive it (and, besides, it might stop soon, right?). The unknown is something else entirely. I had to, pretty much, be forced out into it.

I am not really sure I am up for anymore paradigm shifts. I think I’ve maxed out. Stepping into freedom has been one of the most beautiful and horrifying things I’ve experienced. Many of you who read and comment here, each in your own unique way, know exactly what I’m talking about.

But some what I found in the unknown was a beautiful Unknown… and I continue to find Him. And what with all the bright light, it was a lot easier to see things, to gain clarity, to get new perspectives on things that I’d only read about before in a textbook, never actually seen with my own eyes. Much of what I observed was that some of my precious old “truths” had been nothing more than planks in a little box, nailed shut. There was a lot to rejoice about. It didn’t make the mourning any easier. There is no such thing as an easy paradigm shift. These things only come with the hard pains of transition-stage labor and blood and afterbirth.

But, still, there it was. Freedom.

I still don’t know which end is up, on so many fronts. Personally, I hold tight to the Nicene and the Apostles Creeds, but beyond that, what? I don’t know. But I do know that I have grown to not only love this sense of freedom, but to look for it, to nurture it, to enjoy those things that encourage its growth. And like an ex-con going back into prison, the sight of the thick jail house door is enough to make me sweat.

I hope this means I may now have an instinctual sense for recognizing the confines of the old way, because I didn’t have that before, and I think it would be valuable. But when instinct fails to reveal truth, there are always carefully observed ways of determining what a thing is, what it isn’t. This is why one of my new questions is, “Does it bring freedom?”

Not, “Does it promise freedom,” because there are all sorts of things and people and organizations that will promise all sorts of things. No, I’m talking about standing back and observing and watching what actually happens. Where there are captives being set free, chances are pretty high that something Good is afoot.

Caleb school update

I totally forgot to tell everyone that Caleb's absences have been "excused." Why you ask? It seems when the Superintendent of a certain county in Georgia is confronted with "Caleb's absences have been pre-approved with the principal and you don't need to fill any paperwork out" in writing, from his teacher, a month before we left for Orlando, helps...a lot! Up until we faxed him that little piece of paper he was ALL FOR turning us over to the magistrate judge. "My hands are tied, Mr. Jorek. I have no choice." sure did magically reverse itself. Oh, and they asked us not to tell anyone too. So...shhhhhhh!!!

H1N1 and other bloggy thoughts

I am praying, hoping, and crossing my fingers that the flu or H1N1 doesn't come home with Caleb. It could kill Olaf and I certainly do not want it at home. Another little girl died today in Georgia from H1N1 and several people I know are infected with it. It really sucks to have a person in our home with zero immune system. Wash your hands people and if you are sick, STAY HOME! I don't understand why that is so difficult for people. People are so selfish that they keep their children in school, go to work with a fever, etc. THINK ABOUT SOMEONE ELSE BESIDES YOURSELVES!! I am keeping my children in the house as much as possible. The only child with any outside contact is Caleb. Praise the Lord above for homeschooling.

Speaking of homeschool, Camille is enthralled right now with anime. She loves it. She reads anime comic books, tries to draw anime, and watches anime on You Tube. She is certainly 13 years old and trying to get a photograph of her right now is like trying to take her to the dentist for a root canal. She is also fabulous and fun and my best friend. She is snarky and sarcastic and makes me laugh every single day. Every mom should have a Camille. I love her so much that it almost hurts. She is such a fantastic kid (not perfect, but fantastic!) and I am so blessed.

OIaf and I are going to Vegas in March as long as we can find someone to watch the children. (Hello? Cheri? Renee? Scott? Anyone?) I am so excited about that I can barely contain myself. Who wants to stay at my house? I promise Camille will do all the work, you'll just be here for emergency purposes. (See why I love that child??) I am trying to get him to take me to Rome too. We'll see...

Have you found me on Facebook yet? If not, get a life and find me...

Goodness gracious....

Me and my lack of blogging!! My family just got back from a two week vacation to Disney World. It was fabulous, but hot! September is not the best month to visit Florida unless you like temperatures in the mid 90's with so much humidity that sweat is pouring off you as soon as you step outside. We stayed at Saratoga Springs in a two bedroom suite that had a kitchen and washer/dryer. The children loved going to the pool. The Epcot Food and Wine Festival started while we were there. That is my favorite thing about Disney. We ate some great food and drank some great beer. The down side to that vacation is now there are charges pending against us with the magistrate judge for pulling Caleb out of school. Vacations are considered unexcused absences. I will keep you posted as to how that turns out. I could spend 30 days in jail, do community service, be fined, or a combination of all three. I guess when you put your child in public school they take away your parental authority and the child becomes a ward of the state. If Caleb didn't love school so much, I'd pull him in a heartbeat. When I get my court date I am going to call all the news outlets in Atlanta to see if they would like to come and do a story about this. I think it would be a great headline, "Coweta County woman sentenced to 30 days in jail for taking her mentally challenged son to Disney World." On another note, Simon absolutely loved Disney World. Small World was his favorite ride and we rode it at least a dozen times. He kissed Mickey Mouse and cried when we had to leave. He loved every single minute of it.

I am taking Camille to NYC for a night the first weekend of November. We are going to go see Wicked on Broadway. We are staying at the Marriot Marquis in Times Square. In case you didn't know, I was just in NYC in August. I stayed at that same hotel and saw Wicked. It was then that I knew I had to bring Camille back for a visit. It will be just she and I. I am so excited for her to see the city and walk the streets of New York with me. I hope it isn't too cold.

Gracie and Josiah are doing well. Josiah is in the first grade this year and still holds his pencil like he has a talon instead of fingers. He can read well and is progressing normally though. We won't start cursive for a long time. Grace is in the third grade and rarely asks for assistance with school. She doesn't like anything about school work and just does it because she has to.

I am fat. Heavier than I have ever been and apathetic to change anything. I know changing will be hard work and I guess I am too lazy for that right now. So I just buy my big fat clothes, drink my margaritas, and hope Olaf doesn't mind being married to a fat girl.

Olaf's pemphigus is under control although he still has a lot of lesions on his scalp. His prednisone has been lowered to 5 mg per day but his Imuran is still at 150 mg per day. He is still taking it one day at a time. That's the best we can do.

There you go. An update from the Facebook addict. Let's see if I can post a picture from Disney.

I am so excited!

I forgot I had turned on comment moderation and was thrilled to see comments from before Easter. I am such a dork!

For those of you who want to find me on Facebook, just look for Misty Jorek in the Atlanta network. I should be super easy to find! My profile is private, so you'll have to add me as a friend before you see my page.

I am taking Camille to the doctor this afternoon. She has been very tired the past few months and I just want to get some blood work done. I think it is hormones and just being 13 years old. I remember how puberty sucked really bad. We are going to Charming Charlie's afterwards and shoe shopping. I need some accessories for my new cocktail dresses that I had to buy for my upcoming trip to New York City. I leave a week from today for a few days of fun in the city. I'll be seeing Wicked on Broadway and eating here and here! Then we leave in September for two weeks in Disney World. I'm a travelin' girl!

The children are doing well. School is plugging right along and we are on day 33 already. Caleb is happy to be back in school and riding the bus. I am thinking they all may go to public school next year, but we'll see. Camille will be entering high school next year and I think if I am going to put them in school, that would be a good time to do it. I think she needs some friends and some socialization. She has none right now. I think Grace and Josiah would enjoy it as well. That means our Disney vacation can only be a week and can only be during the winter break (February) at school. I refuse to go in the heat of summer.

Hey, thanks for stopping by and reading this. Leave me a comment now that I figured out I have moderation on. :)

I hear you Tammy

I am so sorry to the two of you who still come here to read about my life. I am on Facebook constantly and there I update the status of my life.

Homeschooling: Yes, we are on week five already. The children are doing DVD's and doing well. I was worried about Josiah, but he is right there with the rest of the first graders. We have a Disney vacation planned for the end of September so I am glad we started early.

Boobies: I am six weeks out from surgery and the girls are where they are supposed to be. They aren't the prettiest things if you happen to see me naked, but when is that going to happen? Would I do it again? Jury is still out on that one.

Gracie has strep throat. I am 100% sure we picked it up at the bookstore in Newnan. Camille had to have the new Warriors book the day it came out, and that is the only place we went. That was Tuesday (a week ago today) and she started with a sore throat on Saturday. Perfect incubation time for strep. She started antibiotics yesterday and is feeling much better. Now, who else in our house will get it? :)

Caleb starts school on Friday. He is excited and ready to go back. I am not looking forward to the sicknesses that are going to come home with him though. Olaf cannot afford to get sick with his immune system being so compromised.

Olaf is...alive. It could be worse. :) He is being weaned off the Prednisone, but I think the Imuran is having its own set of side effects as well. He gets by and we are thankful for every day he has with us.

I have a couple of trips planned this month. It will be a busy and fun month for me. I love my life!! I have never felt happier or more content than I am right now. It's a fabulous place to be. I love myself for the first time in 20 years and that has made all the difference. Yay me!

Surgery is done

I had my surgery yesterday and am feeling OK. The areas where my drains are hurt a bit, but it is not too bad. I can't wait to see the end results in a month or two when the swelling and bruising go away. Yay for perky girls again.

A friend lost her 14 year old son yesterday in a accident involving a gun. That is all I know. I cannot imagine her grief. Please pray for them. He was always the sweetest kid. He was in homeschool choir with my children and always, always went out of his way to say hello to me. So very sad.

Jucy Lucy

Yes, I misspelled that on purpose.  My husband made Jucy Lucys tonight and they were yummers.  I spent today with the girls at WalMart doing some much needed grocery shopping.  The dogs are infested with fleas because apparently they can become immune to Frontline.  So, tomorrow I get to go to the vet to try to find flea medicine that will actually kill the fleas.  We put Flea Stoppers on our carpet to make sure it wasn't our house that had the fleas.  Nope.  It's the darn dogs.  And cats.  Have I ever mentioned how much I despise Georgia in the summer?  The heat, the humidity, the bugs, the heat, the bugs, and the heat.  I want to live in Montana or Vermont.  

My children are cute, cute, cute.  I am looking at Grace and Josiah watching Max and Ruby and they are adorable.  Josiah is a spitting image of my brother.  He is the only child of mine that doesn't look German except his skin tone is dark like Olaf.  He is my only skinny kid too.  He weighs 48 pounds and is tall, tall, tall.  Simon probably weighs 35.  

Simon is a spitting image of Camille.  I wish I had baby pictures of Camille on the computer but that was before the day of digital pictures.  I guess you just gotta trust me on that one.

Bloggy thoughts

Can I just say that I am so happy that Molly is blogging again? I love Molly. I love her honesty and her spiritual journey. I love that she can write so well that you can see exactly what she is trying to convey. Oh thank you Molly for blogging again. My good friend, Cheri, is also blogging again. Since I love and adore Cheri I think you too should read her blog. Oh, and I found out from a girlfriend tonight that Darren Isherwood,the widower of my friend Karen who passed away of breast cancer in October 2007, is getting married again. If you want to check out his blog you can do that too. I can honestly say that if Olaf should remarry so soon after I die, I will personally come back and haunt his arse. I am not trying to belittle Darren in any way, shape, or form. I know different strokes for different folks.  ::in my best Forrest Gump voice::  That's all I got to say 'bout that.

I went to dinner tonight with my friends, Tammy and Patty.  I don't get to see them often, but it is fun when I do.  Patty tells stories better than anyone I know except a Maily David.  Maily was in the Air Force with me and that guy could have us all rolling when he told a story.  Needless to say, Patty makes me laugh with her stories too.  You really should ask her about the time she and Steve went four wheeling.

Looks like I will start school with the children the 2nd week in July.  We've been out since mid May.  Need to get a little bit ahead before vacation in September.  

Sundays are the best

We went to Callaway Gardens today so the family could enjoy the beach. I absolutely despise the beach and everything it entails. I hate getting sandy, I don't like the heat, I won't wear a swimsuit. The beach is torture for me. But, the littles had fun and that is all that matters. Ummmm....right? Camille sat with me in the shade and we complained about how hot is was and how Olaf wasn't watching the children in the water well enough and on and on... Get a fat mom and a 13 year old daughter (who happens to be on her period) together at the beach and we can complain about anything.

As I type this Simon is running around the house naked after his bath. He loves to be naked and when you are two and have fat rolls it is cute. Forty two and fat rolls...not so much. I need to start potty training him but I think I will wait until I am healed from surgery. I don't want to start then stop. That is confusing to little kids. I'd like him to be potty trained before we go to Disney. That would be fabulous.

Olaf's elbow is still infected with staph 30 days later. He is on yet another antibiotic and hoping like crazy that he won't have to go back into the hospital. If this round doesn't work I am afraid he will have to. He was ::this close:: to going back into the hospital a few days ago. Luckily he talked the doctor into another round of oral antibiotics. He still feels like crap every single day and his hope and optimism is beginning to fade. You can only take so much ill health before you actually start thinking that perhaps you will never get better. I am hoping these feelings are from the prednisone and once he is weaned off of that drug that he will begin to feel better. I know it is hard on him, but it is taking its toll on the entire family as well.

Margarita, our chihuahua, got spayed on Friday. Poor little thing. She seems better today but Friday night was horrible. She whined and yelped all night long.

Happy 7th Anniversary to Scott and Frances tomorrow. I hope you two have a fabulous day.

Summer Break

Caleb is out of school and the summer break has started. I have ordered the DVD's for the next school year for the three who will be homeschooled. I am little nervous about Josiah starting first grade though. I didn't do a great job this year and I fear he will be behind. It will be interesting to say the least.

We are counting down until our Disney vacation. A little less than four months and we will be there. Right in time for hurricane season. Oh well. This will be the only year that we won't be going in November. I am not looking forward to the heat either. Blech. Fat ladies + hot weather = mean.

I am having surgery June 25th. Yep, I am getting that long awaited breast lift. No more pendulous orbs for me. I am super excited and nervous all at the same time. No implants, just the lift. Instead of being a cover model for National Geographic, I will be perky again. WOOT!! If you want to see the procedure I am having done, you can find it here. That is an animated walk through of the actual procedure.

Off to change a poopy diaper. I should start potty training the boy now that he turned two.

Long time...

First things first! On May 4th Simon turned two, and today is Grace's 8th birthday! My children are growing up. As a matter of fact, Camille wore make up today. Uh huh (nodding my head). A little mascara on the top lashes (which I had to put on for her) and some pretty blue eye liner. Ah, life is passing by so quickly.

Olaf was in the hospital 2 weeks ago for a staph infection. It was just for 24 hours to get IV antibiotics in him. The staph is still in his elbow and he is still on oral antibiotics. He feels like crap due to the steroids, but he is at work like usual. His heart beats really hard and he has tachycardia as well. Hopefully he will be off the steroids in the next three months. He is now on Imuran, so as that starts to take effect, his prednisone can begin to be lowered. His scalp still has lesions on it, but it looks so much better than it did in March. His mouth and throat are good right now.

One reason I rarely post here is because I am on Facebook so often and post any pertinent information there. If you are on Facebook, look me up. Oh, and Grace has a blog now so go leave her a comment and tell her Happy Birthday!

Happy Easter

Today was a good day. Simon had fun on his first Easter Egg hunt in our front yard. It was precious.



Caleb, Camille, and Simon have a cold. First mono, now a cold. Oh Happy Day!!

Vlog

Tired...

I am tired and it is late. Simon is wearing me out. He only wants me. Not only that, he has learned how to talk and scream and throw a fit. I swore I would be a better parent and never, ever (God forbid!) allow my child to throw a fit or disobey me. HA! And I'll say it again for good measure. HA! I am too old to fight this little guy. The last one really is the most spoiled. Without a doubt. He has a recheck at the doctor on Wednesday so she can look in his throat to make sure he is getting better. I know he is because he started eating again. I may cancel it...

Caleb is on spring break this week. We are going to see this on Thursday afternoon. We also have plans to go see this in the future. I guess we will be learning about China's First Emperor this week in homeschool. I think there may be a Louvre exhibit at the High as well.

Have I mentioned that I am fat? Well, I am. I don't think it is going to change by me writing about it though. Apathetic at this point.

OK, time for bed. It is midnight and I need to sleep. I wish I didn't need to sleep and then maybe I would clean my house. But sleeping sounds like a better idea.

It is confirmed

Simon has mono. Where in the world did he get that? Now I am sure all the children will get it since we all share drinks and food. Oh well. At least I will know what it is once it hits. He is on steroids to help with the inflamed tonsils.

Olaf has a follow up appointment with his doctor that admitted him to the hospital today. I will post any new information tomorrow. I don't think we are going to learn anything new.

Josiah is behind in Kindergarten. I hope when he starts his DVD's next year that he can keep up. I have not done a great job of schooling him this year. He can read, but is behind on knowing his special sounds and is also behind in his writing ability. He does great in math though. He is pretty good on his DS and Wii. Does that count? I don't think the girls will get to finish their entire DVD series as well. We'll be mostly finished. He's not dead! He's just mostly dead!(Princess Bride)

Do you know that no one in my extended family reads this blog? I have a mother, a sister, and three brothers, and not one of them reads my blog. Is that sad or what? Can you imagine having family members, especially your own mother, who knows about this blog, knows there are videos of the children here, knows there are photos here, and doesn't even bother to come? Not only that, I haven't seen them in nine years. My mother has never seen Grace, Josiah, or Simon. She will not come visit even though she lives alone and I have offered to pay her way out here. Do you know how that makes me feel? Worthless. Same with my sister. She is off all summer long because she works for the school system. I offered to buy her a plane ticket out here, but she hasn't come either. I know bitching won't help things, but it just makes me sad. If you have extended family, be grateful. Very grateful. We have none! Olaf has one brother and we don't see him either. I cannot imagine having family who offers to care for the children or who you can call on in time of need. Lord knows I have needed some help the past few weeks. OK, I am done now.

Health updates

Olaf's mouth and throat have responded well to the steroids, but the steroids have bad side effects too. He should be starting Imuran today which is good. In a few months, when the Imuran kicks in, they will be able to lower the Prednisone. It's a balancing act.

Simon had to have his blood drawn today. They are looking for Epstein Barr. He had a fever for five days and now his tonsils are coated in a white plaque. The strep culture was negative.  Oh happy day!

Olaf is home

Olaf is home and Simon has a fever. When it rains, it pours. I am tired both physically and emotionally. I wish I could quit. The end.

Olaf update

Olaf could be home tomorrow if he can swallow the medicine that the doctor wants him to come home with. If not tomorrow, then definitely on Thursday. He is beginning to heal even though he still has a lot of pain. He is on Dilaudid for pain right now and it does wonders for him. However, I don't think they will let him come home on that medicine. Vicodin, yes. Dilaudid, no. I am not sure if he is ready to give up his Dilaudid, so he may stay till Thursday anyway.

I have so many people to thank. I don't think many of them read this blog, but I want to thank them anyway.

Ray - You were the first person I thought of when I needed someone to stay with Olaf on Friday night. I knew you would do it without any reservations. Thank you so much.

Cheri - Thanks for watching the children Friday night.

Stephanie - Thanks for bringing lunch for the children on Friday and taking Grace and Josiah to your house.

Patty - Thanks for watching the children on Saturday.

Chief - Thank you for my Chili Dogs from the Varsity. You rock!

Tammy - Thanks for dinner on Saturday for the kids.

John Morris - Thank you for dinner for the children on Sunday.

Delta Family - Thank you for the phone calls and well wishes and hospital visits. It was very nice to have so many people care about my husband.

Olaf is in the hospital

Just a quick note to let you all know that Olaf is in Crawford Long Hospital. If he responds to treatment we are looking at a 3 to 5 day hospital stay. He cannot swallow at all at this point and is in a lot of pain. Please do not call the hospital room. I will update here as we know more. He will be starting major doses of IV steroids at 4:00 pm. I will be leaving here around 7:00 pm to go home for the evening and will be back tomorrow morning. A good friend of Olaf's from work will be staying through the night with him. Thank God for good friends!! THANK YOU RAY!! I am trying to juggle people to check in on the children, so if you are willing to do that, please let me know before you drop by the house. You can call my cell phone and leave a message if I do not answer. Thanks so much.

Pemphigus Vulgaris and Las Vegas

There is intercellular staining on monkey esophagus at a titer of 1:640. There is no staining with IgG on salt split skin. The Elisa for the anti-desmoglein-3 is positive. The Elisa for for anti-desmoglein-1 is negative. These findings are consistent with the diagnosis of pemphigus vulgaris.

Olaf's diagnosis was confirmed today as Pemphigus Vulgaris. He is now on 80 mg of Prednisone to try to get his symptoms under control. Prednisone can be an awful medicine with bad side effects, but the goal is to get his scalp and mouth healed. Then he will hopefully go down in dosage and be put on Imuran or a drug similar to that. His scalp looks awful right now and he is losing his hair where the sores are. We are hoping that this treatment plan begins to give him some relief from the debilitating pain he is constantly in.

On a much brighter note, Olaf and I spent three glorious nights alone in Las Vegas, Nevada. We had a blast walking the strip, eating at the Stratosphere and looking at the fountains at the Bellagio. Las Vegas has changed so much in 20 years and we truly enjoyed our time away from the children. We need to do it more often. Here is a picture of us in the Top of the World Restaurant in the Stratosphere.



This trip solidified the fact that I don't want anymore children. It was way too much fun and I am too old and selfish to have anymore. I have decided we will do one family trip and one couple trip a year. The end.

Some clarification

There were a few comments from the last post that made me want to clarify some things about Olaf's diagnosis.

Pemphigus is an autoimmune disorder of the skin, therefore the diagnosis is usually made by a dermatologist. The rheumatologist didn't even test for pemphigus because that is not his specialty and it is *that* rare. All Olaf's tests that the rheumatologist did came back negative, so he is 100% confident that the only thing Olaf is dealing with is pemphigus. The rheumatologist is NOT the doctor that will be Olaf's primary care physician during his treatment. It is out of his area of expertise. In this particular autoimmune disorder, the primary care physician is almost exclusively a dermatologist. We still do not have the results from the second scalp biopsy, therefore Olaf has not started treatment. We will hopefully know something by next Tuesday as we are leaving on Wednesday for our first ever trip away from the children. I will update as I know more.

We have a tentative diagnosis

Thanks to the dermatologist of all doctors. Olaf's scalp biopsy came back positive for pemphigus. It is a very rare autoimmune disorder. As a matter of fact, the dermatologist said he has only seen one other case at his practice approximately ten years ago. So today they took another scalp biopsy and drew blood to send out for further evaluation to determine the severity of the pemphigus. When that comes back, then he will start treatment which will include high doses of prednisone as well as other medicines. I am thankful for a diagnosis and hopeful that treatment will help him.

Olaf Update

All of the test results thus far have been negative. We are still waiting for a few more results to come in, but for now Olaf moves on to the rheumatologist.

Caleb had an EEG this morning for his seizure disorder. We should get those results in a few days. He hasn't had a seizure for several years, but he has been on his medicine as well. He gained 17 pounds since his last visit about 8 months ago but only grew an inch. That's my boy! He is 5'7" now. Camille is probably 5'6" now. I think she will hit 5'9" before she stops growing. Josiah is taller in inches than his weight in pounds. He weighs 48 pounds and well over 48 inches. I am not sure of his exact height, but I am sure he is 54 inches or taller.

I am typing one handed, so I am going to sign off.

We know this much...

the sores themselves are not cancer, but we figured that much since they heal with meds. We won't know the results from the other cultures until Monday or later.

My house is a mess because I am lazy. Anyone want to clean for me?

Biopsy on Monday

Olaf has his biopsy on Monday. I'll keep you posted.

Video of Olaf's Mouth

Vlog

Thanks Heather!

Look at my coolio blog. Thanks Heather for telling me about that website. If you use Blogger, look at the little link up in the left corner and you too can have cool backgrounds.

Olaf's mouth is such a mess again. He called the doctor and asked to be put back on the medicines. I have no idea what is going on with that man. I sure hope we can get a diagnosis. He cannot live on antibiotics and antivirals forever. I want to take a photo of his mouth to post just so you guys can have an inkling of how bad it is. His tongue is nothing but a huge white patch that bleeds when the white gets rubbed off by eating or swallowing. All of the soft tissue in his mouth is white puss pockets and his entire esophagus is covered in the same stuff. He can't talk, he can't eat, he feels like crap... And I cannot do anything to help him. Pray for him. He needs it.

Simon caught the cough that the girls had, but when Simon get something respiratory it is always bad. His chest rattles with every breath. The next two weeks are not going to be fun.

Oh, Zoe asked where my last vlog was. I took it down before I reformatted the blog to see if that was the reason my sidebar was all wonky. I just never put it back up. I still have your pen pot. I will get that in the mail next week if it kills me.

In order to get my comments back...

I had to reset my blog. I absolutely hate the awful pink color background, but until I figure out how to change it, you're stuck looking at it. The good news is I now have comments. The picture on top is Olaf and I on our wedding day, January 23, 1988. Gosh I was cute! Where does all this self esteem come from I wonder? Hmmmm.... I think it comes from Cheri.

Bragging a little; OK, a lot!

I absolutely have the best husband in the world.  While on our lunch/breakfast date at Cracker Barrel, my husband looks at me from across the table and says, "I don't know how it is possible to love someone more each day, but I love you so much." Then he started to tear up.  He took a deep breath and composed himself so I wouldn't cry too.  After lunch we did a little shopping.  We went to Rack Room Shoes because he needed some new shoes for work.  While we are there, I start looking at dressy sandals and pumps.  After he found his shoes, he comes over to me and is genuinely interested in my shoe purchases.  He is pointing out shoes and giving me his opinion.  It was fabulous.  I don't even care if he was faking it!  It was still fabulous.  We walked next door to TJ Max and I bought two more pair of shoes.  (And I am not even a shoe gal!)  Then to top it off, today he asks me if he can give me a pedicure.  He asked me.  He said, "You really need a pedicure. (He noticed my awful feet from trying on the shoes.) Do you want me to give you one?"  So off we go to the bathroom where he scrubs my feet with Basin Sugar Scrub, rubs lotion all over them, files my toenails, then paints them red.  What is even better is he said, "This is hot!" as he was painting them.  I think I'll keep him.

Olaf Update

Olaf finished his medicine for his mouth a few days ago, and now his mouth sores are coming back.  He was on a strong antiviral, a very strong antibiotic, and a steroid for 14 days!  He goes back to the doctor on Monday, however his mouth and throat will be covered by that time.  My guess is that the doctor will want to biopsy the sores and perhaps do more invasive tests to look for leukemia and other cancers such as a bone marrow biopsy.  I'll keep you posted.

Tomorrow is our 21st wedding anniversary.  Camille is going to watch the children for a few hours so we can go out to lunch or perhaps go see a movie.  I want to see Slumdog Millionaire since I have heard so many great things about it.  I hope Simon doesn't poop.  She doesn't like to change poopy diapers:)  The temperature is supposed to be 63 degrees tomorrow which reminds me of the day we got married in Hesperia, CA.  I think it was in the low 70's that day.  It was a sunny, gorgeous day and I remember being nervous as I walked down the dormitory stairs with my 2 girlfriends.  I remember thinking (or maybe even saying out loud) I am about to get married!  That is crazy!  To be honest, I never expected to be married for life.  Neither did Olaf.  We were kids and we thought since we were dating, we might as well get married and get some extra money from the government.  The military pays you extra to live off base and you get a supplement for food as well.  So, hey...  Why not get married?  Who knew that twenty one years later we would actually love each other more than the day we got married?  Not me.  

Something I read...

Rosa sat so Martin could walk,

Martin walked so Obama could run,

Obama ran so our children can fly.

Only three days!!

Until LOST returns!  I can't wait to see what happens.  

Five days until my 21st wedding anniversary.  January 23, 1988 I married a 19 year old kid and now I have a 40 year old hottie.  Why do men look better as they age?  It really isn't fair.  I just look old and fat.  

I am listening to Luther right now, holding sleeping Simon, and typing one handed. Talented, eh?  We went to Costco today and spent a wad of money.  I love Costco though.  

My friend, Raylene, gave me a new drink recipe.  It's called a Cloud and it's made with 2 shots Grey Goose Vodka, 1 shot Creme de Cocoa, 1 shot Godiva White Chocolate Liqueur, splash of cream.  Shake with ice, strain and drink.  Yummy.

Olaf is off tomorrow for MLK Day.  I plan on talking with Camille about Civil Rights and what Dr. King accomplished.  If it weren't for him, Mr. Obama would not be taking the oath of office in 2 days.  No matter your political affiliation, our country is making history on Tuesday.  

Oh, Dance With My Father is playing now.  You must listen.

My Vlog with Cheri

Can be seen here.  It was too long to upload to YouTube:)  This one is only 10 minutes and we have FIFTY minutes total, so there will be more people.  Oh yes, much more.

Olaf saw the doctor yesterday and all his blood work came back good.  That was great news!  So now he is on some serious antibiotics, steroids, and an antiviral with the hopes that it will finally cure him of these mouth sores.  If this round of medications do not work, then they will put him under and biopsy the sores themselves.  Thank you to everyone who has asked about him.  I appreciate it so much:)

Chewing...

"I have three things I'd like to say today.  First, while you were sleeping last night, 30,000 kids died of starvation or diseases related to malnutrition.  Second, most of you don't give a shit.  What's worse is that you're more upset with the fact that I said shit than the fact that 30,000 kids died last night." - Tony Campolo

"Water is fluid, soft, and yielding.  But water will wear away rock, which is rigid and cannot yield.  As a rule, whatever is fluid, soft, and yielding will overcome whatever is rigid and hard.  This is another paradox: what is soft is strong." - Lao-Tzu

"Man is a religious animal.  He is the only Religious Animal.  He is the only animal that has the True Religion - several of them.  He is the only animal that loves his neighbor as himself and cuts his throat if his theology isn't straight." - Mark Twain

"Gandhi sought to follow Jesus without being a Christian, whereas we try to be Christians without following Jesus." - Brian McLaren

2009

Here it is. A New Year. A fresh start. A clean slate. LOVE THAT!

However, I need to update everyone on my husband's health. For the several years his health has been declining. He has odd symptoms off and on like numbness in his arm or hands, muscle weakness, very tired all the time, generally not feeling well. The symptoms come and go and no matter how much I nagged, he never went to the neurologist. Well, fast forward to November 2008 while we are on vacation at Disney World. He starts getting mouth sores. You know, like canker sores. By November 15th the man cannot eat because his entire mouth and throat are covered in white patches. He sees our family doctor the day before Thanksgiving who tries to treat him for oral thrush. Nope. Didn't work. He then goes to a PA at our Ear, Nose, Throat doctor who prescribes an antiviral med and some magic mouthwash. He follows up with her 2 weeks later with a little bit of relief, but not much. So, today he sees the ENT Doctor (Dr. Heindel whom I love and adore) who believes that what is going on in his mouth and throat is caused by a much larger problem. He ordered a whole bunch of blood work and Olaf follows up with him next Friday. I mean, this could be very serious. Serious such as leukemia, lymphoma, or another autoimmune disorder. To say I am nervous would be an understatement, but I also know there is not one thing I can do to change things. So, I wait. I wait until someone tells us what is wrong so we can begin to fix it. To look on the bright side, Olaf has lost about 20 pounds so at least his blood pressure should fall:) So keep Olaf in your thoughts and prayers as he endures this awful pain in his mouth and throat. I can't imagine not being able to eat or heaven forbid, drink alcohol. I will keep you posted as we learn more.