Tuesday, March 31, 2009

I was just reading some quilting blogs. For a good laugh you must go read at Bunny Tales and check out her cute screen cleaner!!!
This is good enought to put up a second post today.
Gianduja: The culinary word for the combination of chocolate and hazelnuts.
March 31

I got our big news at the end of the day. Debbie, from Dr. Chiang's office had said she would probably call me today with a surgery date. By the time she called, around 5:15, I had actually forgotten about it. But when the phone rang, I knew it was her.

Justin and Jess will have their BLAs (bilateral adrenalectomy) on May 6. We'll fly to Milwaukee on the 4th and have dr. appointments on the 5th. From what I understand, if everything goes well, they will be out of the hospital on Thursday (7th) and then we stick around for a followup appointment the next week. She said we shouldn't plan on coming home until the 15th.

Now I need to process this all.

I had already been looking at flights and hotels. Now I will soon take the plunge and book them.


Monday, March 30, 2009

Guy 1: I'll have a chocolate cherry grape soda, please.
Guy 2: A what? It's breakfast time.
Guy 1: I like to get my tastebuds up and running. Deal with it and I'll see you at lunch. - Sonic commercial
March 30

Carmel (isn't he cute) has the right idea about the weather - it's been cold & windy. Seems like it's the middle of January.
Tommorw I should get surgery dates. Kind of makes me nervous. Well, actually I feel like I'm slowly having a meltdown. You know that feeling when something awful happens and it feels like your insides turn to liquid. Yeah, that's the feeling.
It doesn't help that tomorrow will be day thirteen of rig 16 being down. Wonder how long that can last.

Sunday, March 29, 2009

Once you consume chocolate, chocolate will consume you. - Anonymous
March 28/29

That quote seems pretty apt for me. Although once I went into menopause (did I say that publicly?!) I don't eat near as much chocolate as I used to. I literally spent a week of each month thinking of chocolate. At work, I'd imagine the candy counter down the street at the drugstore and across the alley at the hardware store. If I did give in I'd usually buy several candy bars or a box of chocolates (that way it'd last a couple of days) or a big bag of M&Ms. Now, if the chocolate is there, I'm willing to eat it but I don't spend a week at a time with a craving.
Now, all this talk of chocolate has me wanting some brownies. Not craving just wanting. Better go check the cupboard and see if I have all the ingredients. I haven't baked much in the last few years.

Okay, now the brownies are in the oven. Actually I think the best part of brownies is licking the bowl. I love that batter.
I've been looking at quilt patterns today trying to decide what to do with my "almost" jelly roll. I just can't decide, but I have found a couple I really like. These strips, instead of being 2 1/2" are right at 3". But I can't decide whether to leave then that size and the quilt will go faster, or cut them to 1 1/2"? I know I won't cut them down to 2 1/2", that would just seem like a waste of 1/2". And I'm not sure what I could do with those strips. They'd be too small to use for sashing.
So what I'm really doing is trying to keep my mind occupied so I don't keep thinking about getting surgery dates this week.

Friday, March 27, 2009

There are many variations to chocolate pudding pie according to Ron Silver, author of Bubby's Homemade Pies, such as: chocolate pudding pie with a chocolate crust topped with espresso meringue or a hazelnut crust topped with candied hazelnuts.

Well, the blizzard turned out not to be. Just a little snow, a lot of wind and cold temps. It's probably hardly measurable as moisture and we really need that.
I did get a call from Dr. Chiang's office today. Mostly she called to tell me that she hadn't forgotten us but probably wouldn't be able to give us a date until next Tuesday. I'm actually okay with that. I think that has a lot to do with the fact that she called even though we couldn't set up a surgery date. From the little she did say, I think there is a good chance we're looking at very late April or early May. I guess we'll just have to wait and see.
I did pick up the kids' meds today. As I looked at them all sitting on the table it really hit me that those meds are all that stand between my kids and death. That makes you really stop and think.
Before this surgery we must remember to get medic alert bracelets. This is now an absolute necessity, a permanent piece of jewelery.

Thursday, March 26, 2009

The traditional way to serve brigadeiro is to roll the candy into balls and cover with sprinkles. Another way is to leave the candy more fluid and eat with a spoon.
March 26

I talked with Dr. Chiang today. We went over the kids' Cushing's history and then he told me that tomorrow someone from his office would call and we could work out the details of surgery. I alternate between calm and scared.
I just talked with the gal that does our papers for us when we're gone. I needed to see if there were any days they would be gone. She said everything works for them.
We're supposed to have a blizzard coming. We'll see. Sometimes when it's hyped this much,nothing much happens. I think it would be a good time to get a big enough snow to shut down the town. This time of year it couldn't last long. Usually when that happens it's so early in the season that we live with it for a long time.

Wednesday, March 25, 2009

"Chocolate Rain" is a song and music video written and performed by Tay Zonday. It was ranked as the most popular viral video on the internet in the summer of 2007.
March 25

Just talked with Lisa, who had pituitary surgery today at MDA. She sounded very good. We discussed the fact that a "crash" really doesn't mean much in regards to cure or no cure. I hope she continues to feel this good. We probably talked an hour.
Tomorrow I should talk with Dr. Chiang. I don't feel too nervous at the moment.

Scheduled outage at 4:00PM PDT on Thursday (3/25).
I just saw this at the top of the page while I was posting. Am I wrong, isn't today the 25th and isn't today Wednesday?!

Tuesday, March 24, 2009

Chocolate harvests believed to be particularly special might be deemed grand cru, a term borrowed from winemakers.
March 24

Today would of been my mother's 89th birthday. She was a wonderful lady. She must of been a big believer in "if you can't say something nice, don't say anything," as I seldom (if ever?) heard her say anything bad about anyone.

As a child she kept my world centered, she was just always there. As a teenager, well, what can I say, she was my mother and not too bright!! As a young single girl away from home she was who I called to feel connected to the family. As a young mother she was who I called for advice or just to talk. And to her credit she never told me that my kids were my payback!!
She died of a stroke when my kids were young. Jess was barely over a year old. While I know she didn't really understand what was going on, she did on some level. She had just started "talking" to a photo of my parents that hung in our dining room. When Mom died she quit talking to it. I also noticed at church Jess would gravitate to women with hair and style of dress similar to Mom's.

Justin was five and he missed my mom a lot. He wanted to stay home every day and not go to daycare. He was also pretty insightful. The night of the day she died, when we arrived at the house, Justin looked around right before we went in the door and said "Who has the instructions for Grandma's house?" I guess he knew who kept track of things in the house.
A few days after the funeral, he was watching me very closely, finally he said "I think it's harder to lose your mother than your grandmother."

Debbie from Dr. Chiang's office called me today to let me know that he is reviewing the kids' files and will call me on Thursday. So, today I came up with something new to worry about - what if he doesn't think they are good candidates for a BLA? I'm guessing I'll always have something to worry about with this disease. It seems pretty all consuming.

Today I talked with a friend who has a daughter close to Jess' age. We have off and on discussed whether her daughter possibly has Cushing's. I kind of think so but I could be wrong. She's started seeing some local doctors and so far has heard metabolic syndrome and adrenal fatigue. She calls me and asks me what I think. She is taking her daughter to an endo soon. Bill & I have been to see him and I wasn't impressed at all. But someone else may have better luck. I hope so.

We just watched The Boy in the Striped Pajamas. I gave Justin the book a couple of years ago. He really likes anything about WWII. It's a very gripping and sad story. It truly brings home how awful things were.

Incidentally, just last week I was scanning a sack of photos for a customer. She had told me they belonged to her father-in-law and some were taken during the war. She said that he had helped liberate a (more than one?) concentration camp. I've printed a lot of old negatives that were taken during WWII. But none like these. Let me just say that holding a B&W photo in your hand is so different than seeing the same kind of image in a book. It makes it so much more real when someone whose name you know has photos of those horrifying scenes. Absolutely awful.

Monday, March 23, 2009

Brazilizn chocolate (brigadeiro): Fudge candy created in the 1920s. It is made by mixing condensed milk and chocolate powder, and heating the mixture to obtain a smooth, silky texture.
March 23

J&J's medical records arrived at Dr. Chiang's office today. I was told he should have time to review them tomorrow and then he will bet back to me.

Sunday, March 22, 2009

Have you ever had one pivotal moment in your life which
may seem fairly innocuous to others but was life-changing for you?
The above quote was on Robin's blog yesterday. It has made me stop and think about my illness (Crohn's) and the kids and Bill all having Cushing's.
Along the way there have been a few of those moments Robin asks about.
I have had Crohn's for many years. About 12 years ago I had a bowel resection. It would put my Crohn's in remission. I knew there was a good chance that it would come back but I had a great year and a half before that happened.
Crohn's has an affect on my eyes. One thing it does is cause eye makeup to irritate my eyes and make me cry, even hypoallergenic makeup. I didn't figure this out until after I had surgery and for some reason decided to put on eye makeup. I never wear it. Who wants to walk around crying all the time! But anyway I put some on and I didn't cry. It all clicked into place. So periodically I would put on eye makeup just to see what would happen. It was probably about a year after my surgery that wearing the makeup made me cry. Right then I knew that my Crohn's was back and it was just a matter of time before I started feeling sick again.
It seemed so weird to me that such a small thing, (crying from my makeup) could change my world so much. But in some ways it was nice to be forewarned. When I did start getting sick it wasn't a surprise.
I still think it's a weird symptom, but not one I can argue with.
With the kids and Bill all having Cushing's we were sort of eased into it with Justin, and the rest followed. Some steps were more like leaps but we were headed in the right direction.
With J&J having a recurrence there was a moment with each of them that I knew things were going to change. Then there were more moments that reinforced that thinking. We would no longer be moving forward praying they had a cure. Instead we were back at the starting line with more testing and surgery in the future.
I knew first with Jess. Probably before she did or at least before she was ready to admit it was back. I'm not sure which is was. There was the day she had to have something to eat before we left to do papers early in the morning. There was the day that her mood changed on a dime. There was the day I realized she was no longer reading. There was the day I just knew.
With Justin I wondered for quite a while after surgery whether he had a cure. There were a few things that were better for him but for the most part he seemed pretty much the same as before surgery. There was one week where he really seemed to feel good and I had hope that he had finally turned the corner. But probably a week or two later he came over to the house and with one look I knew it was back. It was his eyes.
Even though there had been no testing yet, I knew. I knew they both had a recurrence. And the weird thing was, as much as it scared me, it was also a relief - I no longer had to watch and wait wondering if they would have a recurrence.

Saturday, March 21, 2009

Place a Hershey's Kiss at the bottom of an ice cream cone to stop leaks and add an extra surprise.
March 21/22

We went out to eat with Justin & Faith tonight. It was enjoyable. Way too much food though. Good thing there are doggie bags. Faith told us she interviews for a new job on Monday. I really hope she gets it.

Something seemed different with Justin's appearance but I can't quite place what it is. Faith said she thinks he's lost weight, I think maybe he's gained weight. So I don't really know. Maybe he's taller!!

Today after taking Dad to lunch we took an excursion and went past where his grandparents lived. I never knew the place existed until a few weeks ago. My brother told me about it. It's on the road they take to get to the church they attend. It's probably about 20 miles or so from where we grew up but isn't in a place that we had many reasons to go, so most of us never knew of its existence. Bob said every time they drive by the old house, Dad mentions going there for Christmas when he was a kid. It was where his mother grew up.

I wish I could of seen this house years ago when it might have been in a little better shape. Dad says his mom was two when she moved with her parents to this house. Definitely looks like it hasn't been lived in for a long time. But I bet it will be standing for a long time to come. It's hard to imagine what the interior once looked like as there are no walls left and it looks like animals may have once lived here. I try to imagine what an almost ninety year old man thinks about when revisiting such a special childhood place. I know he has been by it occasionally but I don't think he has stopped. These houses built of stone were definitely sturdy and built for a long life. Look at the decorative stars on top of the roof. Dad says they have been there for as long as he can remember. I'm wondering if my great grandparents put it up or if the builders put it there. Either way, I try to imagine their thinking as they decided to put it up on a farmhouse in the middle of farm country. I think it shows that while they were practical they could be a little frivolous.

Dad then had us drive by the remains of his childhood home. There is only part of the foundation left. It's close to the road but on somebody's farm so we didn't get out and investigate. We then went just a few miles to the very small town of Tasco. This was where Dad's family did most of their business when he was a kid. There are no businesses left there just residences.

All in all an interesting little trip.

Friday, March 20, 2009

Doctor: Do you find your body responsive?
Louis XVI: (nods head yes)
Doctor: What do you eat for breakfast?
Louis XVI: Hot chocolate. Hot chocolate.
-Doctor addressing Louis's impotence,
from Marie Antoinette

March 20

Thursday, March 19, 2009

When baking your chocolate goodies, use nonreactive stainless steel bowls, which are good heat conductors. If you're using the microwave, glass bowls are necessary.
March 19

Bill got home from Russell this morning. They finished up location and don't know when they move. Last they'd heard, the front office was talking seven days between locations. That would essentially cut their hours in half. Hoping the oilfield picks back up soon. The one good thing will be that he has time to rest for the next location.
I came across a great camera. I really wish I needed a new one.LOL And that I could afford a new one. This one has a 24x optical zoom!! Wow. I love zooms, it's much easier to get natural photos of people when they aren't conscious of the camera. But the good thing is that by the time I can get a new camera the price will have dropped. Also more manufacturers will start using a large zoom. The pictures I could take with that and the fun I could have. Actually, I just love cameras and would buy a lot if I had spare cash.
Spring is on the way, none to soon for me.

Wednesday, March 18, 2009

Chocolate Dutchess
2 oz. Van Gogh Dutch chocolate vodka
1 oz. Godiva dark chocolate liquor
1 splash amarettoRim glass with white chocolate shavings. Shake with ice and strain into cocktail glass.
March 18

Chocolate vodka - who knew!!!

Everything is ready to send to the surgeon. Then I wait to hear back. I truly think last night was one of the most stressful I've had in ages. I was stubborn (more than I knew I could be in the face of authority) and I held out. This morning I felt emotionally drained.
Now I'm getting my second wind.

Tuesday, March 17, 2009

Okay, my appointment is over & I've had time to adjust. I had a drive-by with Dr. F. I came away with what I wanted and what I feel in my heart is the best choice for our family. The kids are both getting a referral for a BLA.
Got just a tad panicked when I got off the phone. Had to call for support, someone else who knows what I'm going through. Thanks Rene! While I was told a couple of weeks ago that the choice would be ours and he wouldn't "push" I felt like he pushed a lot. But.......
Now it is what it is. The kids are getting a BLA.
Dr. F said that with Bill, he'll have the pit surgery and we'll see where everything falls and then decide about the adrenal surgery. I'm still a bit confused on that though. He said it would be a unilateral adrenalectomy. But I'm not sure we know which one is coming out. Tumor showed on the left gland with an MRI but during AVS the right side was the one secreting excess aldosterone. So that's a little confusing. I'd just presumed that he would also have a BLA. Of course if his pit surgery is no more successful than the kids, I suppose he'd need one.
So now it's for real.

Jess called about an hour before they were scheduled to be home and said they were just leaving Boulder. Another mishap and someone went to the hospital.
Sachertorte, a dense chocolate cake invented by Franz Sacher in 1832, has a thin layer of apricot jam in the middle and dark chocolate icing with shreds of chocolate on the outside.
March 17

I did some more quilt blocks before work this morning. I must be on a roll.

I've been thinking about what to do with this scrap bag. Jess & I each bought one for $10 (!) at the Quilt Cabin awhile back. It's very similar to a "jellyroll" except most of these pieces have the selvage still on. Most of them are about 3" instead of 2 1/2. But I figure for the price these were, I can do some trimming.

I just love these colors. I think they look "happy." My boss brought a book by the store the other day for us to look at. I can't remember the name but it's quilts made from jellyrolls. I need to check it out.

Well, all day I've been waiting for this day to get over. I have an appointment here soon that makes me a little nervous. I just want the day over so I know how it turns out! I don't usually spend the whole day at work just waiting for the day to be over. Well, I worked too, but was still waiting.

Jess will be home in a few hours. I hope today was a better day for her.

I wish I could figure out why sometimes when I'm writing a post, my paragraphs are double spaced and other times they aren't.

May post again later if the appointment yields anything worthy of sharing.

Monday, March 16, 2009

At cdkitchen.com you can find recipes for a yummy chocolate breakfast, such as: cocoa blintzes, chocolate muffins, chocolate banana crepes, chocolate strawberry filled French toast and chocolate pancakes.
March 16

Jess called this evening. She got sick while she was skiing today. I felt bad for her. Hope tomorrow is better. They will be home late tomorrow night.
I'm proud of myself. I finished a quilting project that has been waiting for several years to be quilted. I did the quilting myself tonight. Besides quilting some Christmas stockings a few years ago and doing some practice pieces, this is my first attempt at quilting.
I will just say, I have a lot of room for improvement. But......I did it myself. I suppose it's like when I learned to crochet, the more I did it the better I got. At least I hope that's the case.
It's not a large quilt. It'll just be used on the couch. I did this long enough ago, I can't even remember the name of the pattern. Obviously not to difficult of a pattern, but I like it. I also can't remember where I got the fabric. I think some of them look like "old" fabrics but I'm sure they aren't.
Now I just need to keep after all my projects that are in the works.
The weather felt like spring today. It was 75 when I got off work today.
I've been reading a lot about patients' experience post BLA. It seems, as with everything else, it's very individual.

Sunday, March 15, 2009

The Milky Way candy bar, made by Mars, was introduced in 1923 and was the first threat to the Hershey bar. Ironically, Mars purchased its
chocolate from Hershey until 1963.
March 14/15

The sermon today was very good. It was about worry and how that really helps nothing. The message came from Philippians 4, and how we should give our worries to God. That is something I really need to work on. While I do pray a lot about our situation, I seem to still think I'm in control. And that is not so. Although I do still need to do my part. Appointments and such won't just happen.
There is something I do that Bill calls worry and I call planning ahead. In this case, I really think it's not worry. I'll think about if "A" happens then we need to do 1, 2 & 3, but if "B" happens then we probably need to do 3, 4 & 5, and so on. That part I really don't consider worrying I think it's being prepared for different scenarios.
The youth group left for their ski trip today. I hope they have fun and no injuries.
I have started painting a set of shelves to go in the sewing room. I finished the $5 Quilt block that I got yesterday. Have done some laundry. And have worked on some other quilt blocks.
Justin came by for a few minutes. Scared me. He said hi to me as he was coming down the hall to the sewing room. That was the first I heard him. I told him he needed to make a little more noise coming into the house!

Friday, March 13, 2009

There are only three things in life that matter - good friends, good chocolate, and, oh dear what was that other one?
March 13
Okay, so I'm wrong. I guess Jess does plan to ski. Hope all bones stay in one piece! She's never done this before.
My sister said that Dad's new found energy that came with the new pacemaker only lasted a day or two. That's too bad for him. I suppose he enjoyed having a bit more energy.
Well, we've gotten recycling done, the Plaza cleaned (usually do that on Sunday afternoon, but Jess will be gone then), had supper and cleaned some house. Yes, actually cleaned some! And I dug through that pile of mail that I let collect on the table. I always grab the important stuff and make it into a separate pile when it comes. And for a while I keep up with the junk then let it pile up again. I really didn't use to do this.
And in the middle of all that unopened mail, most of which is BC/BS statements that I've already seen online (I really need to stop paper statements), Jess found my $50 Alltel rebate. I've been wondering for a month or so where it was and it was on my table the whole time. Also found $20 of Dillons checks that are the rewards on my Dillons credit card. Guess I should of cleaned that table awhile back!
Will do some more cleaning tomorrow. We just may get this house back in shape yet! This time when we leave for surgery, whenever that may be, I'd like to leave with a cleaner house than we did last year. Jess mentioned that too. I used to hate to leave the house overnight without things put away and straightened up. But somewhere along the way with everyone sick I just lost interest in keeping up.
We will tackle the sewing room tomorrow. Too much in too small a room! But with four surgeries coming up and finances not being the greatest to start with I'm at least not adding to my fabric stash. I only accomplish that by staying out of quilt shops. Well, except once a month when we go to $5 Quilt.

Thursday, March 12, 2009

In the 1960 cartoon "The Chocolate Chase," Speedy Gonzales takes on Daffy Duck, a gaurd at a Mexican chocolate factory, when Daffy denies the mice chocolate bunnies for Easter.
March 12

I'm so ready for spring. We had a taste of it last week but this week I am doing the morning paper route in single digits again. BBBRRRR
Bill's rig moves again tomorrow. He had off last night and tonight. I think this move will be over two hours from home so he probably will get a motel room & cut out a lot of driving.
Dad got home yesterday from having his pacemaker/defibrilator replaced.We all got an email today from my sister.
I talked with the CRNA this
morning as he was not at home
when I tried him last night. He was not at all
surprised to hear of this surge
of energy. He said there has been a real
increase of blood flow to the brain and extremities and this is to be expected.
ENJOY IT!! as he said. So, if today is somewhat similar it would lead me to
wonder why they turned it down so low in the first place. Granted he was still
alive with that speed, but barely functional. I guess time will tell. He likened
his new energy to cleaning out a carbuerator (sp?) and having a better running
vehicle after that.

I didn't
know who all had talked last night - but yes, he was doing some very interesting
and energetic things. Had Elsie and group giggling and yet a bit

I guess things must be set a little different than with his old one. Sounds like it's a good thing for Dad. Now, just as long as he doesn't think this means he can drive again. I'm pretty sure it won't do a thing for his reflexes! I saw him for a few minutes yesterday on his way home. I can't wait to see him Saturday and see how he's doing.
My copier/printer at home is being a pain. It will barely print and then only the magenta. And very light at that. I had just replaced all the ink, done nozzle checks and header (?) checks and, nothing. I was going to copy all the medical records. I may have to do that at work. The scanner works fine, which I guess is good, but it sure would be nice if the printer did also.
Justin started his keto last night. Jess has been on it a fw days. I'm not sure if she's feeling any difference of not. She leaves Sunday afternoon to go skiiing with the youth group. I don't think she plans on skiing, but there are other activities.

Wednesday, March 11, 2009

You can up the chocolate factor to
almost any dessert by drizzling melted chocolate on it.

That's it, only the chocolate thought for the day.

Tuesday, March 10, 2009

Remember, this is a question answered by
six-year-olds, people who eat chocolate covered cereal.
- Jeff Foxworthy from
Are You Smarter Than a 5th Grader?
March 10

So far keto seems to agree with Jess, although it's been less than 24 hours since the first dose. Still it's looking good.
I took Justin his keto and hydro after work today. Hope his goes as good.
Well, I got up my nerve today and contacted Dr. Chiang's office. I need to copy all medical records and send to them. That should take some time and ink to get through! I was hoping they'd only need the labs since their recurrence. But no, we have to go back to the beginning of their testing.
I don't know why calls like that put me in such a tizzy. From the very beginning of this journey, I have dreaded these kind of calls. Just thinking of making the call puts me close to tears and I feel completely immobile. When the call is over, even if it was a "good" call, I feel like I can't breath and want to throw up. How long I stay this way is in proportion to how "important" the appointment is. While all the appointments are important, some are more so. No problem calling to tell the lab we'll be there for a midnight draw. But they don't have quite the same impact as MRIs, surgical procedures (IPSS & AVS) and the actual surgery. You'd think I'd done this enough that it would be old hat by now. But it almost seems to get worse the longer this all drags on.
Probably the biggest obstacle at this time will be getting Dr. F to send the referral to Dr. C. I wish now that I'd never let him convince me that we'd reconsider a second pit surgery for J&J before we made our final decision on which type of surgery they'd have.
My sister called this afternoon and said Dad came through his procedure just fine.
Off to email Dr. F.
Jess started her Keto last night . Makes me nervous! Not too long after she took it she said she was feeling different but couldn't really describe it. She went to bed shortly after that.
I know I'm just paranoid, she has only had one 200mg dose but I had to stop in her doorway this morning to make sure she was breathing!!
Justin will probably start his today. That makes me even more nervous. He doesn't live with me so I can't keep an eye on him. He seemed to be in a low for quite awhile so he will also be taking hydro every morning. Got back the a.m. cortisol result yesterday that Dr. F wanted him to do. I believe it was 10. I suppose the Keto at night will lower that so he will/might need the hydro. Jess' hydro is "as needed."
This would all be much easier if I could feel what they feel to know how things are going.

Monday, March 9, 2009

Fat bloom looks like gray-white blotches and streaks on the chocolate and occurs when the chocolate is exposed to heat during storage.
March 9

Tomorrow is the day. I'm going to make myself call the surgeon and see where we go from here. Scares me. I'm not one who likes change and this will start the ball rolling towards big change. I know it is definitely for the best, but still scary.
Tomorrow my sister is taking Dad to Denver to get his pacemaker/defibrillator replaced.

Sunday, March 8, 2009

The Hershey bar was introduced in 1900 with a price of five cents.
March 7/8
I left after work Friday to go to state b-ball. Jess was already there and was with my niece. I was headed for Amanda's (niece) house to spend the night. It was after 11:00 when I got there and felt bad that I'd kept her up so late. We visited for awhile before going to bed. We both had to leave early the next morning, so we really didn't see a lot of eaach other. But did enjoy it. And her bed is so much cheaper than a motel!!
Manda had Jess with her when she stopped at the babysitter's to pick up her daughter. First, the babysitter knew that Jess was coming because Isabella had been talking about it. But she had never said what the relationship was. The babysitter asked Manda if Jess was her sister, because they looked so much alike.! I love that, because I've thought for several years that they look enough alike to be sisters. She also thought Jess was about 20 instead of 16! So, do they look like sisters in the photo below?
Manda & Jess
There was a break between games for Jess and we drove back down to Newton and went shopping with Manda and the kids for a while. It didn't really matter what we were doing because it's pretty easy to visit while shopping.
Jess' team won their first two games and lost their last one. So they got second place.
On the way home we stopped in Salina and had supper with Myrna, my sister, & her husband. They were there for a craftshow. I hadn't seen her for a couple of months. so it was nice to see each other.
I never do like the time change, but it seemed really bad this morning since it'd been a pretty long day yesterday. I really used to hate the spring time change when the kids were little. It was so hard to get them to go to bed when it was still light out.
The kids had their liver panel done last week. We only just got the keto on Friday. I decided if we'd waited this long we may as well wait until we get their labs back. If by chance their livers were already screwed up by Cushing's, it probably wouldn't be a bad thing to not take it. I would suppose I'll get the results this week.

Friday, March 6, 2009

I owe it all to little chocolate donuts. -
John Belushi
March 6

Off to b-ball tonight. I'll miss taking Dad to lunch tomorrow.

Thursday, March 5, 2009

Pearl sugar: A sugar used for decorating
with large crystals that have been polished to a pearl sheen.
March 5

Almost the end of the week, how does the time go so fast? Tomorrow after work I'll leave for McPherson and the b-ball tournament.
Bill had his CT scan this morning. I don't know when we will get results.
We got TWELVE medical bills in the mail today. Eleven of those from LapCorp. Eight of those for Jessica. Must have another whole slew coming for Bill & Justin. I wonder if they've ever thought about sending one itemized bill with all the tests for one month. But they do make it easy. It looks like you can pay online.
Crazy weather today, above 75 in the begining of March. But it's turning cold again.

Wednesday, March 4, 2009

The Netherlands both imports and grinds the most cacao in the world.
March 4

Things are really sinking in that this is finally going to happen - four surgeries this year. Personally, I want this all done as soon as possible, don't we all! I'm considering whether I can go ahead and contact Dr. Chiang even though Dr. F hasn't officially said that J&J can go straight to BLA. I guess I feel like if there isn't something being set up, testing being done (and there's no more of that) or results to wait for, I must be wasting my time! I've just been pushing way too long. It's as if the finish line is almost in sight and I want to get there.
Jess is gone until Saturday. It's state b-ball tournament for the home school teams. She is going down with another family. When I get off work Friday, I'll go down. We'll stay with my niece and family that night, they're only about 40 minutes away. It'll be fun to see them.
So tonight she went with my sister, Sue, over to Grinnell for supper at the VFW (first Wednesday of the month). They were meeting up with Elsie, Ronnie & Dad. She will then have my sister, Elsie, take her to Albie's house, which is only about three miles from Elsie. They're leaving about 5 a.m. tomorrow. So she was excited about having supper with some of the family tonight.
So I'm home all alone, Bill left for work about and hour and a half ago. He has his abdominal CT tomorrow morning. Poor guy can't eat or drink tonight. I picked up his barium today at the hospital. All I could think, was I was so glad it wasn't mine this time. I've drank more of that crap than I want to remember.
Yesterday Sue called about the end of the day and asked if she could come down and talk to me after I locked up. She sounded pretty serious, so of course I said she could. She works at the hospital and had talked to their social worker about the position we could be in if Bill gets too sick or his recovery is very long. She had several resources that Kelly had given her. Kelly even said she could help fill out paperwork if we needed, as she does it all the time. How great is that. Sue had talked to Elsie about it and they were afraid I'd be upset and not want to try to get any assistance. Well, they were wrong. When this is staring you in the face you decide that being strong and doing it all yourself isn't always the best way.
First, Kelly said Bill should start the process now of filing for disability, that way if it takes awhile, we have an early start. And if in the end he doesn't need it, that's okay. There's also now a guy at the local SRS offices who does voc rehab. Kelly said the kids should apply. Same thing, if they need it at some point, it's in place. If they never need it, that's okay too.
Should also start looking at Medicaid. I think I need to make an appointment to talk with Kelly myself. It's so great to have an organized and resourceful sister. So, more things to get done.

Oh, oh, oh, I'm listening to iTunes, Jess. I hardly ever listen to my music. Right now it's "Old Time Rock & Roll" by Bob Seger Reminds me of living in Great Bend. Definitely a song best listened to with the volume on high. And then play it through a second time. I think every jukebox in town had this on it.

"Knocking on Heaven's Door" - dragging Main in Hoxie. Man, were we innocent then but thought we were so grown up. I think how much J&J have experienced at their age compared to what I had. I had never heard of Cushing's when I was in high school, much less lived with it.

"Drinking my Baby Goodbye" - Charlie Daniels Band. hhhmmm, This could of been our theme song back in our twenties! Glad to be past that phase.

"Cat Scratch Fever" - Pantera There's really a disease called that. A former customer of ours was/is (?) the videographer for Pantera. I printed a lot of their party pictures. Not my thing at all.

Garth Brooks - "I've Got Friends in Low Places" - guess that's what happens when you hung out at a place called the Water Hole.

'Bad to the Bone" by George Thurgood ????

"The Streets of Bakersfield" - Dwight Yoakam & Buck Owens I think it's sad and mournful,

Right now "Cherry Hill Park" by Bill Joe Royal is playing. I loved this song as a young kid. I knew all the words and in later years learned that I had no idea what they meant, which I guess is a good thing!

Ah,Juice Newton & "The Queen of Hearts". I used to house sit for my city editor when I worked at the Great Bend Tribune. I would lay on their floor and listen to Juice blasting from their stereo. I love her music. She was in Colby a few years ago. I thought it was great.

"TNT" & "Dirty Deeds Done Dirt Cheap" by ACDC always make me think of Justin when he was at this worst. Not sure I want to examine that one too closely!! Actually, I think it's because he used to play them a lot.

"Ruby" by Kenny Rogers. I was high school age or younger, I think, when this was popular and it used to make me want to cry. He is so sad.
More music some other day.
Just got a message from Jess that says my sister, Myrna, will be in Salina this weekend. That's close to where we'll be. Wonder if we can see each other. Jess must of heard this from one of her aunts.
All my talk of music has made me sad. Some of the songs are sad and some just remind me of great times with friends. I miss those friends, they all live far away. We shared a lot of years of our lives, good, bad & in between. I wonder what it would be like if any of them lived close to me now. Would they understand this journey our family is taking or would they let me drift away.

Tuesday, March 3, 2009

The Milka bar (Alpenmilch in Europe) is called a "chocolate confection." It's not called chocolate in the United States
because it has added whey and hazlenut paste.
March 3

I think we came up with a plan yesterday. Just hope it works like we want. Bill wants to wait on his pit surgery until the kids are taken care of. Even if Dr. McC was to see tumor on a new MRI, the kids still want a BLA, get it done and over with. So I've emailed Dr. F and asked if they wanted BLAs anyway is there any reason to get a new MRI at this point. If we have to get them and wait for Dr. McC to read them, it could set us back quite a few weeks. I asked him if he would clear them for BLAs now. He had said he wouldn't push us one way or the other, I hope he means that. And I hope it doesn't take a month or more to hear back from him.

Monday, March 2, 2009

The way you eat an Oreo reveals your personality: if you eat the whole thing at once, you're carefree, even irresponsible.
March 2

About two years ago I started a blog on the Cushing's website. I wasn't too faithful, I see. I'm moving the few posts that I did, over to this blog. I wished I would of done better. It's interesting to see my thoughts back then.

Apr 2 2007, 12:41 PM
What are the odds, if I start to keep a blog I'll actually keep up with it? At the moment it seems like a good idea because Maybe I'll keep rack pf symptoms better. Maybe I should keep track of this time to come because I feel that somehow it will have a big impact on our family life. Whatever happens tith the kids will change forever how we are. It may not be big changes but it will be changes.

Hopefully some of the changes will be getting a diagnosis for Justin and get him on the road to recovery. His personality changes so often,sometimes subtle, but a change nevertheless, that I'm not really sure who he is. I'm ready to find out.
So far I'm not sure what to think of Jess because she really isn't sick, she just has so many symptoms. Which I'm sure if left alone she will probably be sick in a few years. Not something to look forward to.

I'm not to faithful at this
Oct 7 2007, 11:04 AM
Well, it's been a few months since I decided it would be a good idea to keep this blog. I should of known how I'd do. I used to love to buy diaries and then I seldom wrote in them, but I sure loved having them.

Since my last entry alot has happened. Justin moved out of the house in May. He & Faith have an apartment together. I wasn't really ready for him to move what with him being sick. But since moving he has taken on more responsibility and that is a good thing.
Jess is also being tested for Cushings. I feel so sad for her. But hopefully we're catching it in time and she will never have to travel the same road as Justin. I would guess that having watched him for the last two years is what makes her want to test.
I have alot of thoughts about how this has impacted our family but some days it's just hard to face.
I believe I usually think of Jusitn first when thinking of the kids being sick because he showed symptoms first and has been in such bad shape. I pray I pray.
Jess not going to public school this year is really a blessing. Info about IQAcademy came just in time. Not odd at all how that works out. As she said yesterday, life really isn't tough for me when you really never have to get off the couch if you don't want to. I think if I had to get her up every morning and she had to face a day at school every day, life wouldn't seem quite this easy.

Photo link
Oct 7 2007, 12:47 PM
I'll see if this works, putting up a link to my photos I've loaded onto Flickr
http://www.flickr.com/photos/10306778@N07/These are just various photos I've taken at different times. I have alot on film I want to scan & mess with in photoshop. I think my favorites will be still lifes of Mom's things.

Made a decision (I think)
Oct 14 2007, 07:40 AM
While doing papers this morning I was thinking about Cheryl Evertt & how I need to call or write and thank her for info she sent me a while back. She was diagnosed by Dr. Potisha from Denver. He comes to the Goodland hospital to their specialty clinic.

I didn't want to originally take the kids to him because I was afraid he would be like all the other doctors and brush us off. Testing after being in LA has shown they both have alot of elevated tests. Justin in all three categories (serum, urine & saliva). Jess just in serum. All her salivaries were low & her UFCs (urinary free cortisol) leaked in transit so could not be tested.
After surgery (presuming they get to that point) they will need a local endo to work with. The endo that comes to the specialty clinic in Colby is not an option. We have seen her (before she started coming to Colby) and she was way less than helpful.
I think I'm going to make an appointment with Dr. Potisha. It then occured to me that there is a chance when he sees some of their numbers he could make a diagnosis. How scary. The problem with that is that I'm afraid if we want surgery with Dr. McC at MDA we'll have to prove their cases all over again to the endo team there.
I have a phone consult with Dr. F. on Dec. 2nd. Seems like a long way off & I'm pretty sure that he will have them continue to test more. Thankfully, it is Justin that is having the best test results. He is the sickest and he is the one that Dr. F has questioned if he really has Cushings.
I'm about at my wits end with both of them sick. Jess is getting more symptoms recently & that worries me. Justin seems to of decided that he doesn't mind his quality of life & just wants to live with it.
Me? I just want to run away.

Sunday, March 1, 2009

Well, I've been up all night and papers should be here any minute. I was so keyed up after the phone appt. with Dr. F I couldn't sleep. I started getting tired a while ago but knew better than to go to sleep or I'd never wake up to do papers. I'll go to bed once papers are done. Don't think I'll make church today.
Bill doesn't yet know he has a diagnosis. He was going to get in on the phone appt. but went to bed before the call came. While it's very exciting news, I hate to wake him up as he sometimes has such a hard time sleeping.
I sent out an email to family & friends that have been following us through all of this. Hope they don't pay attention to what time I sent it. They'll wonder why I was up in the middle of the night.

Later - papers are done, I'm going to bed. Will think about all this later today.