Saturday, February 28, 2009

All chocolate fondue food should be served in
one- or two-bite pieces to allow for easy skewing or hand-dipping. Strawberries,
large marshmallows, and small cookies are perfect as they are.
Feb/Mar 28/1

Waiting for a phone call - anytime between 9 p.m. and 10:30 p.m. (CST).
How nerve wracking, it's after 9, so probably don't have to worry for about 20 minutes at least. We aren't the first appointment for the night.
Maybe I shouldn't of eaten that hamburger, tasted like cardboard anyway.
Ten minutes later - feel a lot like I need to throw up. I have no idea what to expect from this phone appointment. And now it's almost twenty after, I'm getting more nervous.
Maybe I won't answer the phone, then I won't know if the answers aren't what I want to hear. This, more so than any other appointment feels like it will be life changing, Whether good or bad I don't know. Depends on whether there are any diagnosis given out tonight.
This is worse than waiting for a date to show up (back in my dating days)
Nothing holds my attention, how many games of solitaire can I play?
Almost 9:30, was the first appointment a twenty minute or thirty minute phone appointment? No way to know. Wish I was a long distance mind reader!!
Maybe I'll hyperventilate instead of puking.
I don't remember being quite this nervous before my other phone appointments. I guess I feel like more rides on this one. Bill is in pretty bad shape.
It's 9:40, maybe I'll go to sleep and forget the whole thing!!
Heck, I don't think I'll be able to talk anyway, I feel like I can't even breathe. Wonder if Dr. F knows how much he holds in his hands (head?)
Geeze, my arms feel like they don't work. like not connected to my brain.
Wish there wasn't food commercials on TV, makes me feel ill
10:00, maybe he won't call, maybe I don't care anymore, we can just live in limbo forever, at least I know how limbo works, Something will change with this phone call
Will either of the kids be re diagnosed? What if they are re diagnosed and Bill doesn't even get a first diagnosis? What if one J is diagnosed and the other isn't? How will that affect things?
Why can't I just quit thinking?
10:15, I look at the clock too often
we always seem to be the last phone call of the night, wonder how he decides the order of the appointments?
10:20 think I can turn off my brain? Quit thinking about when the phone will ring.
Just read something I found through Google

Cushing’s syndrome is a hormonal disorder caused by prolonged exposure of the
body’s tissues to high levels of the hormone cortisol. Sometimes called
hypercortisolism, Cushing’s syndrome is relatively rare and most commonly
affects adults aged 20 to 50. People who are obese and have type 2 diabetes,
along with poorly controlled blood glucose—also called blood sugar—and high
blood pressure, have an increased risk of developing the disorder.

Found it here

I guess they don't realize that those are symptoms of the disease.

10:26, tired of being on pins and needles. I really might be throwing up by the time he calls! I hate this. (not saying anything bad about Dr. F, just saying I hate this all) It messes with your mind.
10:28, I think Justin is the only one not waiting. I don't think he knows the appointment got changed and is tonight.
10:29, okay, back to more solitaire. Does everyone feel like this when waiting for their phone appointment?
Oh good MASH is on now. Must mean it's 10:30
I'm feeling sick again, maybe it really isn't going to happen. It's 10:40. I know they don't run exactly on schedule but it's starting to reminded me of the time I stayed up until about midnight thinking maybe the first appointment ran very long. Found out the next morning through email, it had accidentally never been scheduled.
10:47, maybe I really should give up hope
10:52 - oddly I'm not even nervous anymore. I really don't think he'll call. But now I'm dissappointed. No answers this weekend.
11:00 - just checked Lynne's email again to make sure I had the date right. I did.
11:06 - guess I'm still holding out a little hope or I wouldn't still be watching the clock. Now my arms feel like lead and like they don't want to move.
I wonder how we are so lucky to have this happen twice. Now how long before I can have a phone appointment? I got moved to today (HA) because of a cancellation, so I'm sure mine that was originally scheduled for next week has been cancelled. Wonder if it's still available.
Bill promised his boss he would have something (good, bad or in between) to report after tonight. Guess not. They already wonder how this can be taking so long. They just don't understand. I'm guessing he is more disappointed than I am.
I was wrong - he called.
Bill has Cushng's!!!!!!!!!!! Pituitary source. Also thinks he has aldosteronism. So will need surgery for both. Needs to get another CT of the abdomen.
Kids need to get another MRI and send to McC. Both will start Keto and take some hydro. Need to get a baseline liver panel. Justin has been in a low lately (I think) so he needs to get an a.m. cortisol.
Bill adds another bp med.
I can start setting up pit surgery for Bill. With the kids we'll see what the new MRIs show. If McC sees tumor then it will probably be pit. We discussed BLAs for the kids. In the end it sounds like the type of surgery would be our choice, he wouldn't push.
Too much to think about now and appointments to set up. Too bad it's not Monday morning and I could get the show on the road.
I think I'm too keyed up to sleep.
YES!!!!! Bill is diagnosed and the kids can go back to surgery!! Dr. F said we should ask if McC gives a family discount!!LOL

Friday, February 27, 2009

The bank of friendship cannot exist for
long without deposits of chocolate.-Anonymous
February 27

I'm getting a little freaked. My phone appointment with Dr. F has been moved to tomorrow. Lynne had said she'd let me know if there was a cancellation. Now, I'm not sure I really want to do this. I'm afraid of getting no answers yet, translated to mean - I'm afraid no one will be cleared for surgery.
UGH! I hate feeling like this when I'm waiting.

Thursday, February 26, 2009

Near the end of the sixteenth century, the
daily wage of a man in the Guatemalan province of Verapaz was forty cacao beans.


February 26

I sometimes use Picnik to edit and mess around with photos. I have some old photos of Mom & Dad so today I did this with them. I usually just play around and don't really do anything with the results. But it sure is fun.

I've gotten a few more stories up on Dad's blog, well it's my blog but his stories. It's much easier putting up the ones that are only a page or two of type. Those few he's done that are five or so pages are kind of a chore. Tonight I sent a link to some of his cousins. They might enjoy reading some of his stories.
Getting a few more blocks done on my scrap quilt. Feels good to sew again.
At work we're starting to to do the transfers of VHS to DVD in house. It's fun but I haven't figured out the editing software yet. I have some of the video on my laptop so will probably try to work with it some more while at home. I think I'll enjoy doing it and we can get it back to the customer faster than when we have to send it out. Tomorrow I have some heat pressing to get done. I love doing that.
One more UFC each for Justin and Bill sent off today. I know 17's are tested next week so we'll pray for high results.

Wednesday, February 25, 2009

The word fondue is derived from the French
word fonder, meaning "to melt."
February 25

I got the results of the last UFCs that were at the lab. Bill's and Justin's were both very low, cortisol and 17 OHCS. I would think they neither one would have been feeling too good when they did those tests. I'm shipping one more for each tomorrow. Possibly two for Justin.
I think Bill is done with UFCs for a while. He had been taking no pain killers while doing them. He's been hurting so bad lately. I told him we'd just pray he had enough already and to go ahead and take some pain pills.
Just a little over a week until my phone appointment with Dr. F. I'm not sure that I'm looking forward to it. I'm sure Jess will be able to move ahead to surgery. I'm just praying the other two are also ready. Then I will find out what he thinks of my idea about BLAs for the kids.
My boss asked me today if Justin wasn't approved for surgery yet if I would go ahead and take Jess. I told her I didn't think so, at least not right away. If it should take Justin too long to get enough highs, then I'd have to reconsider. It just adds so much more expense if I have to travel twice.
I'm really wondering what Dr. F will have to say about Bill. If he's approved for surgery, which kind will it be. Or will he need pit and adrenal. We have yet to know what the results of the AVS at Cedars. Not that I haven't tried to get the results, just never seem to.
So, Justin isn't quite as smart as I always thought he was. Yesterday when he got on the roof to do some patching he used a step ladder that didn't quite reach the roof. I didn't think that sounded to smart. But when I found that he had put it on the top step, I couldn't believe it. Our steps aren't very wide. He won't be doing that again, one slip and he's flat on the sidewalk. I'll tell him, we've put way too much money into him for him to kill himself this way!!

Tuesday, February 24, 2009

Add butterscotch chips or liqueur to chocolate pound
cake or double chocolate cookies for a surprisingly good flavor
February 24

Jess is at Basketball practice and should be home in about an hour or so.

Justin did some patching on our porch roof today. YEA!! When I came home and saw that he used a step ladder propped against the side of the house to get to the roof, I decided I just wouldn't watch him come down. Didn't look to safe too me. He stayed and talked for about half an hour or so when he was done. That's probably the most we've visited in a long time.

He did say he's now okay with having a BLA, if that's the way things go. For a while he was kind of hesitant. It seemed to me that he thought it would be better to stay sick than to have his adrenals gone. I'm glad he's come to terms with it, because if that is his only option at some point, I'd hate to think of him staying sick instead of having a BLA.

He also said that being sick for so long has made him more sympathetic to others. He said so many times people say "you just don't understand." He said "I just think 'oh, yes I do.'"

I've done just a little sewing tonight. I wanted to get at least a start on putting some of the half square triangles together that I'm making my "scrap" quilt from. I'm not recutting any to make sure they are the exact size, too lazy maybe, so a few things don't line up exact. But, it's not that much of a biggie to me on this one.

This is just the beginning of it. I do have a lot of the squares sewn but not put into a block. This will take a long time since I"m only using scrap triangles from other quilts. I've dug to find what I have now and then the rest will come as I make other quilts.

Monday, February 23, 2009

Must be very frustrating being a chocolate policeman. Why don't you do something serious with your life and go look for a few chocolate war criminals. There must be something useful you can do.
-Dickie, from Airline
February 23

No new test results yet. Hoping Justin has some UFCs for me to ship this week. He doesn't respond to texts, but....... I did just a little quilting tonight. I'm sewing all my corners from "snowballs" into half square triangles and going to make them into a very scrappy quilt. Of course there are various sizes so I will need some filler (I can't think of a better word. Today I cut a double matt with a title cut. I think it's okay. I'm sure those will never be my favorite matts to cut.

Sunday, February 22, 2009

I've been getting a few more of Dad's stories up on the blog I'm making for them. I need to see if I can find some more photos. There just aren't that many of his family, at least not when they were kids. I'll have to have a look through his chest of drawers some day and see if there are more. He told me awhile back that I could look, but I haven't taken the time yet. Maybe I'll find some real treasures.
There were ten kids in Dad's family. He and his brother Arthur are the only ones left. I may have to ask Uncle Arthur what he has in the way of photos of his family.
Jess & I were in charge of pups this weekend. My niece's dog had pups several weeks ago. They are really cute and close to the age of going to new homes. One of which won't be ours!
Well, hopefully next week we'll get the results for the final tests that are at the lab. Send a few more also. Testing is so much fun!

Saturday, February 21, 2009

S'mores variation: Place slices of
bananas on top of the chocolate and top with marshmallows



Jess & I took Dad to lunch today. No little girls, they were busy.We got a bill from UCLA Med Center today. They think we owe them some from Bill's IPSS last Dec. I was sure I'd seen all the insurance statements from that procedure and we owed no more money. So I double checked everything and we're fine. I just have to convince them.
Jess felt really bad for a while last night. Seemed to come on really fast. While feeling bad, she ate a lot of pickle spears. I can't remember what it is about salt, but I need to find it and read it. I'm guessing she needed salt.

Thursday, February 19, 2009

Oh fudge - how we love you for tempting us as you do.... Fudge, you are not just candy. You are olfactory and
gustatory ecstasy, and we shall eat every last morsel.

-Chef Marcel Desaulniers
February 20

I called Esoterix today hoping to get results of Bill's & Justin's last UFCs that were at the lab in time to have the 17 OHCS tested this week. Well, that part wasn't done yet but he offered to go ahead and fax the cortisol results. I should of saved the paper as neither ever gets high cortisol. But hey, maybe we'd get lucky. Bill's cortisol was 16 and poor Justin's was 5.4. I told him to keep filling those jugs, hopefully he'll go into a high soon. I'm just guessing that when we get results of his 17s, they'll be low also.
Poor Bill, he has been feeling so bad. Work tonight won't be any fun, it's getting colder and very windy, maybe a little snow later.
So glad we are on the countdown to spring.

Look, there is no metaphysics on earth like chocolate. - Fernando Pessoa, Portuguese poet

February 19

Got one UFC & 17 OHCS result for J,J&B.
Bill had a 17 OHCS of 17, so he has five high 17s and no high UFCs.
Jess had a UFC of 80 & 17 OHCS of 40!!
Justin, poor guy, had a UFC of 7 and 17 OHCS of 3.2. I guess low shows something more than "normal" would, at least to me.
Bill & Justin are both doing a couple or three more UFCs before our phone appointment. They each have one more at the lab that I need results of. I'm really hoping for some more highs of some kind for Justin, as he seems to be lacking. A few more probably wouldn't hurt Bill either.
Jess has been in bed since about 8:30, that's pretty early for her. Bill has had a couple of days off and seems to have slept a lot, day and night. I'm not sure which is worse, when he sleeps all the time or when he can't sleep at all.
He used to never get cold, even outside in the winter. Now it seems he never gets warm. Doesn't eat spicy food quite like he used to either.

Wednesday, February 18, 2009

Fudge was first sold by Emelyn Battersby Hartridge, a student at Vassar College. Hartridge go hold of a friend's recipe, and in 1888 made thirty pounds of fudge for the Vassar Senior Auction.
February 18

I took a chance today.
A lady and her two kids came in for passport photos. The son walked in first and it was like seeing Justin about ten years ago. He was built the same, very stocky, had bright red chubby cheeks. He could of been Justin, he even acted a lot like Justin would of in the same situation. Although I don't know if that means anything.
Instead of waiting for the photos they were coming back in a few minutes. That gave me time to decide whether to say anything. I honestly didn't know whether I should. It could be a very touchy subject and I could alienate a customer who could cause all kinds of trouble if she chose to. I decided to play it by ear, partly it would depend on if the kids came back in with her.
She came in when there were a couple of other people in the store so I pretty much ruled out talking to her about Cushing's. But she just looked around until the others had left. Her kids weren't with her.
So I took a chance. She didn't get upset. I ended up printing a brochure on Cushing's (taken from the Cushing's web site) for her. She did say that her husband had died about three years ago. She told me he had been a very big man and died too young but the doctors did not know why. She said she knew something was wrong with him but wasn't really sure what.
She also mentioned that her daughter was four. I would of thought a lot older judging from her height. I know I was trying to size her up and compare her to her brother while I was taking her photo. I had decided she was a toss up.
I also gave the lady my phone number. Truthfully, I don't expect anything to happen. I don't think people seek help until they are desperate. But all I can do is give them information on where to get help, I can't get the help for them.

Bill said they finished up location this morning and they move again on Friday. That's just about "normal" time. I just don't want to get my hopes up that work is getting back to a busy schedule. A regular paycheck would be nice about now, but.......
I do know that trucking will have moved a rig every day this week. That hasn't happened for about the last six to eight weeks. They have only been moving two to four rigs a week.
The stress of Bill's job situation on top of all the medical junk is really getting to me. The medical situation isn't changing anytime soon so maybe we'll get lucky on the job front. Although for Bill's health, it's better if he has quite a few days off between locations. So the physical and financial are kind of at odds with each other right now.

Monday, February 16, 2009

In 1689, Hans Sloane developed a milk
chocolate drink in Jamaica initially used by apothecaries, but later sold by the
Cadbury brothers.

February 16

I got my new medicine today. It's Levsin. Take one every four hours if needed. I asked the pharmacist how fast it might work. He said fairly fast. He was right and it seems to be working. The pain seems to be gone. YEA!! Now I wonder why I never thought to bring it up a loooong time ago.
The phone appointment with Dr. F is now scheduled for March 8. Guess that's more time for everyone to get in some more testing and have all the results back before then. Now if we can just hold on to hope until then. Although actually, I don't have a lot of hope left. I'm probably just being pessimistic but I hate to get my hopes up for anything at this point.
So we will just keep plugging away.

Sunday, February 15, 2009

My niece just had a baby boy!!! Hopefully, photos tomorrow. My sister has a couple more hours of driving before she gets there.
The chocolate thought for today is from the weeks I missed before Jess got me the calendar.

The botanical name of the chocolate plant is Theobroma cacao, which means "food of the gods."
January 2
Jess went to Goodland with the youth group today, to see the movie "Fireproof." One of the churches there is showing the movie and invited other groups to view it with them. She was pretty tired today after the Midnight Ramble last night. I'm not sure what time she'll be home. It seems a little weird to not have to take her to and pick her back up from her activities.
I'm very proud of myself. Today I finished February's block and I only got it yesterday! I also started putting together a lot of half square triangles left over from various projects. I intend to put them together in a very scrappy quilt. It'll be a work in progress for a long time as I need a lot more scrap triangles. No new fabric in this quilt top.
Below is the block and setting that I finished today. It looks a little off but that's because I have a hard time getting the pictures exactly square.

I just talked to my sister. She is about to have another grandchild. Her daughter, Tanya is having a c-section right now. Chad is supposed to email photos. I hope he doesn't take too long!

Hopefully by the end of this week I'll have results from all of the tests we still have out. I emailed Lynne several days ago and told her when I thought we'd have all our test results back and she could. She and Dr. F had both emailed and suggested we move it up from March 22. I did want to wait until I knew there would at least be some test results back. I've also paid for the appointment and sent the receipt to Lynne. So I'll see what response I get.

Saturday, February 14, 2009

Happy Valentine's Day.
Chocolate thought for the day - I can't believe this is the best they could do for Valentine's Day!
Fondue etiquette: When you put the fondue food into
your mouth, try not to touch the fork with your lips or tongue because the fork does go back into the pot.

February 14/15

Last night I finally made the January block for $5 Quilt class. Class was this morning so I really had to get it done. This year it's being done a little different. For anyone who wants we pay a little each month and get enough material to do the setting around each block. If the block is done each month at class time we still get the block free. This is the block and setting I did last night.
This afternoon I almost finished the February block I got this morning. Maybe it will inspire me to get back to some of my other projects. I've pretty much abandoned them since everyone got sick, Making my blocks last night and today made me rememeber how much I like quilting.
Jess is gone tonight. Her Girl Scout troop is in charge of the Midnight Ramble for the whole Council. It's being held here at the college. She'll be home in the morning.
Went out and took Dad to lunch today. Hadn't seen him for a couple of weeks as we were gone last Saturday. I guess a couple of nights ago he fell in the middle of the night. He was by his recliner when it happened and he was able to get himself into the chair and just spent the rest of the night there. I wish he was more stable on his feet.
Tonight our church had a Valentine's Day banquet as a fund raiser for our purchase of an additional building across the street from the church. The youth offered babysitting services for a free will donation, also to go to the building fund. I was asked to be the adult in charge of the babysitting. TWENTY FIVE kids!! Thankfully there were a lot of members of the youth group there to keep them entertained. I'm pretty sure I'd never want to run a day care!

Friday, February 13, 2009

No time for a post now but must get in the chocolate thought for the day before it's a new day!
Peanut Butter Banana Dippers: fill an icing bag, fitted with a small star tip, with peanut butter. Pipe a star of peanut butter on banana slices. These are wonderful with chocolate fondue.
February 13
I quilted some today! First time since early December. It was fun.

Thursday, February 12, 2009

Chocolate thought for the day.

Milton Hershey's American milk chocolate tasted different from European chocolate. Hershey used more sugar because it was less expensive than cocoa butter.

February 12

I may have to start scanning these calendar days, as they have the best looking pictures.

Today I had an appointment with my GI. I finally decided to ask him about the pain I have had for years right under my left breast. It's bothersome to the point that I haven't worn a bra in years. If I sleep on my right side (which I really like to do) I have to hold a pillow very tightly over this place and the pain is not too bad.

When I told Dr. J that if I went several days and barely ate, the pain subsided, he said he suspected that things were getting caught where the intestine "turns a corner" and loops down (or is it up? they look like a tangled mess to me). He is prescribing something (that I can't remember the name of) to take that will relax the intestine and it should help with the pain. He said this med melts under the tongue. I think I take it before meals. If it works out I'm to let him know and he'll prescribe a pill that is longer lasting. I so hope it works. I've put up with this for years and have finally had enough.
If it works, I'll kick myself for not having brought it up a long time ago. I'm really anxious to get this and try it out.
If it works, I can wear a bra again. Now I know that years ago it was the big thing to quit wearing one but I really don't like the "let it all hang out" look, so my style of dress has changed a lot since I've gone braless. I usually make sure I wear two layers if I'm in public. It would be so liberating to just wear one layer.

Wednesday, February 11, 2009

We got something funny in the mail today. Coupons to be used at Ralphs.
Ralphs is where we do all our grocery shopping when in LA for medical appointments. It's a Kroger store as is our Dillons store here at home. So when at Ralphs we can use our Dillons shopper card to get the sale prices.
We periodically get Dillons coupons in the mail. But I had to laugh at the Ralphs coupons. It means we've been there waaaay too many times. They don't expire until April. Hope we don't have a chance to use them!

Since I didn't get my "chocolate" calendar until a few days ago, I need to get the all the quotes from the first weeks of the year in somewhere. I'll just randomly put them inside other entries. So here's the quote for Jan1.

Anything is good and useful if it's made from

I agree 100 percent.
Today's chocolate thought
Marcel Desaulniers, chef at the Trellis Restaurant, has written a popular series of books: Death by Chocolate, Death by Chocolate Cakes, Death by Chocolate Cookies and Desserts to Die For.
February 11

Everyone needs to check out Jess' blog if they haven't already. This is what she was working on when she went to Seattle and New York City. I'm proud of her.
Sending off three more UFCs tomorrow for Bill & Justin. They should get there in time for the 17 OHCS to be tested next Tuesday.
Tomorrow Jess & I go to Hays for my appointment with my GI. I should ask him what the plan is if sometime my blood work comes back abnormal from my Imuran. I've never really wanted to know because I like to think that the drug will never adversely affect me. But I would like to know there is a back up plan.
Bill had a rig move today. Since about the first of the year, this is the first time there hasn't been at least a week between locations. Old location finished on Sunday and they moved on Wednesday. That's almost "normal." Hope that's a good sign of a turn around. We'll just have to wait and see.

Tuesday, February 10, 2009

Todays chocolate thought
Eclairs are made into an oblong shape with choux pastry, then filled with vanilla cream or custard and topped with chocolate icing. Eclairs are also known as long johns.
February 10

I have been tagged by Christina to share six things that make me smile.
1. Mail - but only personal mail
2. My little nieces and nephews
3. High test results
4. Printing funny pictures
5. Watching Frasier
6. Surprise gifts

I tag Kay, Robin, MaryO, & Ready Go I only came up with four
RULES:Link to the person who has tagged you.Write down six things that make you happy.Post the rules, tag six others and let them know you did it.Then tell the person when your entry is complete.

Monday, February 9, 2009

Last night I mentioned reading on a Crohn's support board. I guess it was a good thing I didn't really really want to be there or the email I got tonight would of really hurt my feelings.
Dear judycolby, Unfortunately your account at Crohns
Disease Forums did not meet our membership requirements as it was identified as
being a spam account. Therefore your registration was deleted. If this was done
in error please reregister at and e-mail us at your username and e-mail so that we can properly
register you. We apologize for this and hope you will register again. Thank you,
Crohns Disease Forums

I sent back an email asking exactly how I could not meet membership requirements. All they asked for was a username and password. And why would I look like a spam account. Oh well.

Chocolate thought for the day.

Spanish explorer, Hernando Cortez found Aztec Indians using cacao beans to prepare a drink called xocolatl, which means warm liquid.
February 9

Got a few results from Esoterix today.
Jess (last saliva)....0.065
Justin UFC.............cortisol-14.....17OHCS-11
Bill UFC..................cortisol-50.....17OHCS-13
Not great but not too bad, one high 17OHCS for Bill & Justin & Jess already has six high salivas.
Bill & Jess each have one UFC at the lab (17s won't be run till next Tuesday) and Bill & Justin each have one in the freezer. I think they are each doing another today.
I think Robin was the first person I heard mention putting all the test results in a spread sheet. I didn't when just the kids were testing. But with all three testing, I've found it's the only way I can keep track. That and a list of results I need to get from the lab. I use Googledocs for a lot of things and I do my spread sheets there. Pretty handy as I can access them from anywhere.

Sunday, February 8, 2009

I was just reading on a Crohn's message board. It surprised me how little I relate to this. It has been over 12 years since I got my dx. I spent the first eight or nine of those years on a roller coaster with my health, and of course several years previous to diagnosis. The last three or four years have been pretty good. Truthfully, I think if I'd had my current GI from the outset, I wouldn't have had so many bad years. But that's all in the past.
Anyway it occurred to me awhile back that I actually know much more about Cushing's than I do about Crohn's. Oh, I know how it affects me, but have very little knowledge about the disease in general. I thought I should check and see what patients were saying.
What really surprised me, or maybe not, was how prevalent prednisone still is. Oh my! There are so many meds out there now, I wonder why pred is still so common.
I haven't read enough to see how hard a time people are having getting a diagnosis. It really wasn't that hard for me to get a dx. Just took a couple of years because after a few tests in the beginning, doctors were only having me test when I was sick. Which seemed smart to me. I would be very ill for about 24 - 48 hours and then be perfectly fine. Sometimes I had many months between flareups.
My family doctor was the one who did some of the first tests. One of the first he ran was a 24 hour urine collection. I honestly don't know what he was looking for and back then I never asked as many questions as I do now. I was probably a dream patient as I asked very little and questioned protocol even less. And I did no research until after I had been diagnosed. But back to my urine test. Dr. John gave me the collection jug and told me the next time I was sick to collect for 24 hours then just turn in either at the lab (in the hospital) or at the nurses' station if the lab was closed. Well, the lab was closed when I took it in so I went to the nurses' station.
When I am really ill, I have terrible diarrhea and of course that means a lot less urine. So the jug (about gallon size) had about an inch or so in the bottom. The nurse I turned it in to looked at the jug and said "Obviously you didn't understand, you were to collect ALL of your urine for 24 hours." I guess she didn't understand that when you're sick nothing is "normal."
Next, I think he had me admit myself to the hospital when I was sick and they ran a lot more tests. Ruled out a lot. Dr. John's son was in practice with him and I remember they both came to see me the second day I was in the hospital. They were leaning against the heat register talking about me when I heard the son say that maybe it was stress related (I already didn't like him much and even less after I heard that) and I was so happy when I heard Dr. John say "No, because she never got sick when her mother died." He didn't even say "probably not" or "I don't think so" he just said "No." And he was right, I'd gotten through Mom's death and the following months without ever getting sick.
I think it was after that hospitalization that he referred me to a specialist.
It just seemed odd tonight to be reading so much personal stuff about Crohn's and find that it didn't move me in any way. Maybe another day I would feel differently. Or maybe it makes a difference that I've been feeling pretty good for quite a while now.
This food is an old Greek delicacy. We call it Chokalata Crakalika...That's alright, sort of like a chocolate meatball, only crunchy.
-Memo, from
Acropolis Now


Yesterday Jess bought me a small calendar that has chocolate quotes for each day of the week. That was sweet of her as I love chocolate. I told her the only way it would be better was if there was then a piece of chocolate for each day.
We went to Manhattan for basketball games yesterday. Their team lost both games. I think there are games in Quinter in a couple of weeks.
Somehow I managed to fall asleep for a few minutes during the fourth quarter of the last game. I never know how I manage that. I fall asleep in church, at movies and if I go to school concerts. It's embarrassing.
Jess felt pretty rough this morning. I think yesterday was a bit much.
I meant to call Esoterix yesterday to get the rest of the test results. By the time I remembered, it was too late. I always thought I was calling to CA but now I'm not sure. I called a few minutes after 5 p.m. CST and got a recording giving their hours in Central time. I sometimes call after 5:30 when I get home from work and always get somebody. Maybe they just keep late hours.

Friday, February 6, 2009

More saliva results - Justin this time.
1/29 - 0.041
1/30 - 0.120
1/31 - 0.120
2/1 - 0.084
2/2 - 0.083
Little by little we'll get there.
Hopefully tomorrow I can get results from UFCs. Bill has either four or five that I need results for. Justin has out two and Jess has one. I think Bill and Justin each have another ready to go and maybe (if I'm lucky) I can get another out of each of them to ship next week. I'd like at least two for each to be there in time for testing the 17 OHCS in the next round, which is a week from next Tuesday.
It sounds so funny to write "a week from next Tuesday." When we were growing up that was an expression Dad used when he meant something was never going to happen. Say if we were really little and we asked him when we could go to town by ourselves, he would of said "a week from next Tuesday." And we knew that meant never, or at least not in the foreseeable future. We kids now love it when "a week from next Tuesday" is an actual answer.
Tomorrow Jess and I will be in Manhattan for basketball games.

Thursday, February 5, 2009

Happy birthday, Justin!
Twenty years ago today I gave birth to my oldest child. How can that much time have passed?

Tuesday, February 3, 2009

Jess got her license today. She's a happy girl. And she has taken advantage of that freedom and gone a few places. Thursday she's having some girls over to spend the night and celebrate her birthday. There is no school Friday, so they have all day to hang out together. I presume she knows they can't spend all day cruising town!
Today I got the long awaited (at least these three weeks seemed long) envelope from Cedars Sinai containing Bills AVS (adrenal venous sampling) results. Well, that's what I thought would be in there. What I got was a detailed (very detailed) report of how the test was performed.
HHMMMM? What is this and why do I have it? Where are the results? You know the results of all those little vials that were drawn? That's really all I want! So I called the number listed for "if you have questions." The gal told me I'd gotten exactly what I ordered, which was "Adrenal Venous Sampling 12-10-08." Never occurred to me that that wouldn't include the results! But I guess you order results separately.
Finally the gal told me to just fax the request again and this time check the box for "all records." I hadn't done that the first time as I didn't see the point of getting all the results from his MRI & CTs that were done in June.
Now I know in case I ever have to do this again. Just hope I don't have to.
Called Esoterix and got one saliva result each for J&J. I'm hoping that means I can get the other four of Jess' tomorrow. Justin's other salivas will get there tomorrow.
UFC results - maybe I'll check Thursday or Friday.
Jess got another high - 0.190. Justin's was perfectly normal, darn.
Testing, testing, 123, testing. Gets old, doesn't it?

Monday, February 2, 2009

HAPPY BIRTHDAY JESS!And a drink to get you through the day.
My daughter, Jessica, turns 16 today. She thinks she's all set when she goes to get her license tomorrow! She's been dreaming about it for months.
I'm hoping her sixteenth year will be the year she becomes Cushing's free.

Sunday, February 1, 2009

I've been at this way too long. Saw an email in my inbox from Dr. F tonight and it didn't even make my heart jump like it usually does. Haven't decided if that is a good thing or a bad thing. Bad, as in that it has just gotten to be routine. We're moving up my phone appointment to sometime in February instead of March. It will be for all three. Should have several more results for everybody by then.
I also have noticed when the fax rings at work it no longer turns me into a nervous wreck, even if I'm sure that it will be test results I find in the machine.
I've also come to not even notice the Esoterix boxes sitting around the house. We could just start using them as white end tables. All the cool Cushies can have them!
While having lunch with my dad and brother yesterday, Bob & I talked a lot about our medical situation. Of all my siblings he probably knows the least about it. I'm not sure why that is, I suppose when we do see each other we talk about other things. And they don't have internet service at home, so they never get updates. But I haven't sent out an update in a long time as there is nothing new to say.
Anyway we covered a lot of ground yesterday from physical to mental symptoms concerning Bill, J&J. As we were about ready to get up from the table, he looked right at me and said something like "you lead a really strange existence." He meant no offense and I took none. He was just stating a fact from his point of view. And yes, compared to my siblings' families, we do lead a quite different life. But I don't see it changing much anytime soon. I'm sure it's a good thing for him to see how it is when a rare chronic illness (X3) comes to live in your house.