Saturday, January 31, 2009
1/18 - 0.059
1/19 - 0.073
1/20 - 0.460
1/21 - 0.180
1/22 - 0.310
Monday or Tuesday (depending on when I call FedEx) I should have one more UFC from all three to send in. On Tuesday I think the rest of Justin's salivas should be ready to send in.
I think there is a chance that by next Friday or Saturday I should be able to get results from everything I shipped yesterday. I know they are at the lab because when I called today to get Jess' results they told me they had just arrived today. So I explained that there was some that had come in earlier in the week. Judging from what I saw on the Esoterix website, everything should be tested by then.
I have to keep a log and mark off what results are back or I get confused with so many tests going in. Hope the rest of the results are as good as the ones we got today.
Lunch with my dad was fun today. None of the little girls went for various reasons. But their dad (my brother Bob) ended up going with us. I let him drive so that he wouldn't have to eat his knees. We took the "scenic" route! Dad thought we ought to try out a cafe in Gove, a very little town. Bob called someone he knew to see if this place was open on Saturdays. His friend thought it was. Well, his friend was wrong. But it was a nice drive. After eating at The Shack in Grainfield we stopped for Dad to visit a neighbor and then took him home.
Justin & Jess both had somewhat odd growth spurts. Although they both were skinny (very skinny) little kids, for many years they seemed to grow "out" and then eventually grow "up". But the growing "up" never quite caught up with the "out." Justin gained a large amount of weight around fourth or fifth grade and developed stretch marks. That always puzzled me as nothing had changed in his life. I had been somewhat overweight as a child so I thought that had something to do with his weight. Although looking back, I really wasn't much overweight, I just felt like I was. Jess on the other hand didn't really start to gain weight until about her eighth grade year which was when all of her symptoms started full force.
I think about how when Jess was little and I'd put her hair in a ponytail. I remember how I'd wrap the band four times around the ponytail because her hair was so thin. The next summer as I was putting her hair in pigtails (which means there should of been half as much hair in each) I could only wrap the band around twice. Same bands, same size. I remember thinking that her hair sure had gotten thick.
Both kids also went from straight hair to curly hair, which Jess hates. Oddly, I didn't really notice until we were in the middle of chasing a diagnosis and I discovered that hair changes are very common for Cushies. I guess when you see someone everyday, changes are harder to see. And of course it didn't just happen overnight. I remember reading others' experience with hair changes and it hit me that my kids used to have very straight hair.
Also looking back at school pictures, Jess' especially, her face is a different shape from year to year. Looking back I wonder how I missed seeing these things. But the changes were gradual, rounder and then slimmer.
I did use to wonder how Justin could run around without a coat in cold weather. But his dad did the same. People used to stop by the store in the middle of winter just to tell me that they'd seen Justin out at recess without a coat. I figured by that age he was old enough to know if he was cold and never thought too much about it. At the time I never knew that could have anything to do with an endocrine disorder. And at some point he used to be able to sweat clear through a pillow overnight.
Here I have to add that the other day my brother mentioned how hard it was to keep a coat on his youngest daughter and of course alarm bells went off in my head. I never know anymore whether I'm over reacting to things like this in other people or if there could be a real problem. And what about one of my nephews who is overweight and now I find out he has high blood pressure (he's 20) and I know he has stretch marks. Of course this is my side of the family. I do have one cousin who I'm sure has Cushing's.
I also remember that for a summer or two before Justin's symptoms hit full force his work shirts started looking really funny. He is very partial to dark tees, (short sleeved, no collar, no cuffs). He was mowing lawns then and would of spent a lot of time sweating. The shirts started turning brown across the back and the front. It sort of looked like when you accidentally get a very small amount of bleach on a dark color. It doesn't take all the color away, it just takes some away, if that makes sense. It stumped me to see those shirts every time I was hanging up laundry. When I started reading about other people that had the same problem it hit me that probably this fading had something to do with excess cortisol. Makes me wonder if it was in the sweat and if someday there will be a test developed to measure cortisol that way.
Looking back it's so easy to see symptoms. Hindsight is great.
I also remember that when Justin was very young, four or five, somewhere in there, my sisters and I would wonder if he had ADD. He would flit from toy to toy and activity to activity in mere seconds. Used to make me tired to watch him. I would talk with Elsie & Sue about this and they had noticed the same thing. But maybe just a few days later I'd find him sitting quietly. playing with the same toy for a long time. So then I would forget about his "hyper" times. Eventually the flitting from one thing to another quit. I'm not sure I ever thought about it again until a couple of years ago in the middle of the kids' testing and I'd start thinking back to their younger years and try to remember anything about them that seemed very much different from their cousins. I'd compare them to the cousins because those were the only other kids that I'd spent a lot of time around.
And now that I think about it, when I was pregnant with Jess, we used to joke about maybe finding out that Justin would be the calm one of the kids. And I know that later Bill & I would sometimes agree that that was the case. I feel bad about this, but a lot of Jess' younger years are sort of a blur to me as I was sick with Crohn's so often. But I do know she was a very active little kid!
I've sometimes wanted to do what Jess did with her new blog and write it all down. I'd add in my feelings and how it all was affecting things in our family. But even the changes in the family happened so gradually that they were hardly noticeable until one day you realize that life is so different than it was even three years ago. And I don't mean the changes that go along with a family growing up and activities changing.
I have always felt this need to not forget what we have gone through to get to the point we are now. Which, when I think about it, really isn't a whole lot better than it was three years ago! We just now have more people with Cushing's than I originally thought, a whole lot more travel, a whole lot more medical expense and at the moment a lot less income as the oilfield is in a major slump. Of course that has nothing to do with everyone having a rare disease, but the timing really is bad.
I sometimes go back and read some of my first posts on the Cushing's board. I'm not sure why, a lot of them make me cry when I remember what life was like then. Saying that, makes me realize things have changed, in that we know what is wrong. That is so much better than when we were still in the dark and watching Justin's life disintegrate, this was before I realized Jess was also developing symptoms. Maybe that is why I reread those posts, I need to remember that things really were a whole lot worse than they are now.
Friday, January 30, 2009
I really hope that at some point the kids and Bill have a cure (remission) and only have to deal with the aftermath of Cushing's. No new diseases popping up.
When Andy first ordered some tests for Bill just to see if we were on the right track, he also ordered tests for parathyroid and a pheo. I think I remember this correctly. The parathyroid was tested either two or three times and always at the same time as his cortisol. Not because anyone thought there was a connection but because they both needed tested.
Now I think this is odd. When his cortisol was normal, so was the parathyroid. When the cortisol was high, so was the parathyroid. I emailed at least one parathyroid expert (and maybe two, I can't remember) and they said there is no connection between the two.
But still I wonder. I had thought when parathyroid was off - it was just off. That it didn't cycle like cortisol can. I hate to waste money (mine or the insurance company's), but I would love to have those two tests repeated together several times and see what the results are. If PT is still high when cortisol is, I'd then like to have the test redone several times when/if he gets to remission with Cushing's.
It's just my personal theory and maybe it only presents that way with Bill? Who knows for sure.
I sometimes wonder if, when one has more (besides the usual that goes with Cushing's) going on than Cushing's, if it isn't the driving force behind them all. Cure Cushing's and maybe the rest in one shot?
Just my unscientific thoughts!
And now I know why I couldn't post the little widget to put Dr. F's interview on my blog. This morning when I went to Herding Zebras I found every one I'd tried to post!! Not sure how that happened. I used the address for this blog when trying to inbed it. Oh well.
Today the van gets new brake pads. No more squealing for me.
Thursday, January 29, 2009
And surprise, surprise, tonight I found two frozen jugs in my freezer. Finally. Now I wonder how long it will take to get some more UFCs from Justin. He's also doing a saliva tonight, he just doesn't know it yet.
Jess has been doing salivas and am sending her second set of five in tomorrow. With any luck I might be able to get results tomorrow from the ones she did last week.
Bill only has to do UFCs.
So tomorrow, everybody has tests going in.
My SIL was in town today and stopped by the store. We ended up eating lunch together. Burgers from the Meat Market. Best burgers in town. They only serve from 11 - 1 on weekdays. We had a good visit.
Tonight Dr. F was on blogtalkradio . It was very interesting.
Monday, January 26, 2009
It's cold tonight. Tried snowing some today but not much accumulated.
Shipped Esoterix today. Should have more to ship later this week. Justin better be actually doing some UFCs. Initially he seemed like he was on top of it but...... I think I'll have both kids do a few more midnights. Jess is doing salivas and I think Justin should do some more too.
We get done with all that testing and that should take care of our deductible. Hope they have a payment plan!
Sunday, January 25, 2009
Saturday, January 24, 2009
Jess didn't play a whole lot. Both games were lost, the last one by just two points with only about 40 seconds left on the clock. One thing I noticed about this team is that they like to play and they like to win, but their spirits don't seem dampened by a loss (or two). That's good.
Elsie brought Dad over to watch the first game.
There was a girl on the first team they played that looked very Cushie to me. I studied her a lot and I'd bet she either has Cushing's or is on pred for some reason. Definitely the face, neck, eyes, midsection. The upper back/shoulders look just like Justin's. His "hump" isn't a typical Cushie hump.
On the way home Jess said that she was feeling funny. like there was a balloon blown up in her chest/abdomen area. I asked her if it was like bloating and she said it wasn't. Not long after we got home she said it was still there and it felt hard to breathe. I knew she wasn't feeling good when she came out and laid down on the couch and covered up to watch TV. She fell asleep not long after that, a little after 8:00. I imagine sleep is good for her. I hate when new things crop up and we don't yet understand what they mean.
I think I'll go to bed soon too. I missed my nap that I quite often take on Saturdays.
Obama has made it very clear where he stands on abortion. While it did make the front page of a local paper I notice that I had to search to find it on some news web sites.
Bitter cold weather back for the last few days.
Wednesday, January 21, 2009
Our Favorite Chocolate Quotes
Americans eat this much chocolate:
100 pounds every second
6,000 pounds every every minute
360,000 pounds every hour
8,500,000 pounds every day
60,000,000 pounds every week
250,000,000 pounds every month
3,000,000,000 pounds every year
Chocolate Fads, Folklore & Fantasies
Linda K. Fuller, PhD
I just found this when I when I was looking for a chocolate ecard to send to my niece. I'll be sure to do my part to keep the statistics up!
Tuesday, January 20, 2009
Judy- I can get you in sooner, if you want. Dr. Friedman wants Bill to continue
taking UFC's. Here's a req attached; print as many times as you need/want. This
phone appointment is for Bill, correct? Dr. Friedman told me on 1/13/09 that he
wants bill to keep doing UFC's and set a phone appointment. Dr. Friedman's
Guess, there's my answer - more testing. I had thought that the IPSS was pretty definitive. And of course now that three will be actively testing we can meet our deductible for the new year very easily. Well, if we can afford to pay the bills when they come!
Can hardly wait to tell Bill. Something tells me that since the email I sent was ignored, the kids will need a lot of highs. Time to call Esoterix - again.
I wanted an email, I got it.
Monday, January 19, 2009
I'm starting to understand Quick Books a bit more.
My brother and his family might be moving to Florida. That makes me sad. It's one thing to have one of my brothers in Florida off and on throughout the year to keep an eye on things, but quite another to have one move there. They have a custom silage cutting business and one of the dairies they cut for in Florida is a year round job. I've worked in that area with them so it won't be completely foreign. Just a long way from the rest of us. I'm guessing they'll find a house in Okeechobee.
Sunday, January 18, 2009
Saturday, January 17, 2009
I'm now waiting for medical records at Cedars Sinai to send us the results of Bill's AVS. Once I get those I'll fax the results of the AVS & IPSS to Dr. F. See what happens with that.
If the kids have any more results back by then, I'll fax those also. Justin is (I hope) working on some UFCs. Jess needs to do some salivas but those kits haven't arrived yet. Probably Monday.
Justin was off yesterday and today so we saw him some. He was over a bit ago to see if we had anything for headaches. Odd, because Jess also has a headache. I don't think either of them get one to often, or at least they don't tell me if they do.
It seems to be getting harder to fix meals for the family. Between odd sleep habits and food cravings, meals never seem to be the right thing at the right time. I don't try as hard as I used to. I hate fixing meals that no one wants. So I don't always, there's plenty in the house for someone to fix what they want. It feels a little weird though, meals are something I'm supposed to be doing. Maybe some day it'll all mesh.
Wednesday, January 14, 2009
Bill hasn't worked for several days. I guess the lower oil prices may have scared away a lot of investors, leaving fewer locations to move to. That's just my theory. I just know it's not a good thing when he was off most of the month of Dec.
I finally got up the nerve to take a hard look at our finances and figure out a plan for when Bill is off of work for surgery. I'm still assuming that at some point he will get there. I realized the plan will be to just wing it day by day. There probably isn't enough to meet all the bills each month and buy groceries (and gas). So it will just be a matter of deciding which bills are late. No, wait that won't work so well, most of the bills are auto debit. I have left a cushion in the checking account for a few years. Wonder how far it will go.
After Bill's surgery it may be time for me to find an additional job. I just hate the thought of starting a new job when there are so many family demands (or maybe it just seems to me there is, as so many things can need attention) on my time after a surgery. And then what do they say if the kids have surgery soon also. I don't know what I'll do but I have been playing with that idea.
It's trying to snow and I'm sure I've been hearing thunder. What a weird combination.
I've noticed some blogs going private. Cuts in to my reading material. But it makes my blog list shorter.
Tuesday, January 13, 2009
Monday, January 12, 2009
I remember feeling secure
the world was mine
it belonged to us
nothing could harm
I remember little children's faces
so cute, so free, so fun
sometimes being bad
I remember sick days
did they have more than others
were they really sick
did I wish them sick
I remember having fun
supper on the table
sometimes games at night
sitting in the same room
I remember less and less
Quilt class tonight.
Sunday, January 11, 2009
Friday, January 9, 2009
Jess is home from the b-ball tournament. They lost both of their games today.
I'm starting to do the bookkeeping at work. It's been done sort of haphazardly the last few years. I take care of our finances and it's pretty simple - if it's not medically related, don't spend what you don't have. But I've never kept actual books.
We use QuickBooks at work. My boss decided that we would just set up a new account and start over, of course carrying over balances. But that's part of the problem. There is nothing in the "vendors" section to carry over. There are loans that have been paid off for years that are still on the books. There are accounts that I know we owe something on, that show nothing.
So I'm building it from the base up. By the time I'm done building it I should understand how it all works. I've always help with our charge customers but was even having a bit of a hard time with setting that up. It took me awhile to figure out how to get it to add tax.
Actually, I'm not sure if it's ever been set up to use all the features possible. But I intend to get it figured out. It seems a little intimidating at the moment. But I know that it will make things much easier in the long run.
Maybe I ought to try this for our family and also for our rental house, which loses money every month!
Jess called yesterday while I was at the post office but she told Ardath (my boss) that they'd won one game and lost one. They play again this morning. If they win, they'll play again. She's playing with the local home school team. She seems to enjoy it. It should help her out with her PE this semester.
I saw Justin for a bit yesterday. I can't as easily gauge how he feels these days. Which I think means he doesn't feel as bad as he did before surgery, which is good.
I am really no good at waiting. We all are like that I think, we want to see the results of testing NOW. Still don't know anything about Bill's AVS. And I know that waiting to get the results from Dr. F will take forever. I'm sure he has Cushing's and the AVS will show if he has aldosteronism. If he has both I'm not quite sure what the plan will be. I think about it a lot and try to figure out which the doctors think would be the best, pit or adrenal surgery. Maybe all three can just have BLAs and be done with it.
Maybe today will be the day for AVS results. Of course I think that every day!
Thursday, January 8, 2009
On second thought, I don't recall feeling pissy until I read that.
If I didn't have such an understanding boss my job would of been gone long ago. But maybe since I'm not a "professional" it wouldn't matter quite as much. My husband might not be a "professional" either, he also has very little time. His work is so physically demanding that he comes home from work and can do very little but sleep, or try to. If he's not alert at his job, it could cost him (or someone else) their life.
Actually, I think we all are professionals whether we work for an hourly wage or stay home and raise our kids.
I thought of pointing this out on the board, but thought it would look petty & pissy.
So I choose to be professionally pissy at the moment.
Monday, January 5, 2009
Saturday, January 3, 2009
Lunch with Dad was a lot of fun today. My niece and her two kids went with us. They were at my sister's house. Elsie just lives a half mile from Dad and does more to take care of him than the rest of us. So, Manda, Jordan (7) and Isabella (4) went with us. I always forget how funny they are. And of course I'm always happy that my kids no longer run me ragged trying to keep them in line! Although really, her kids are very well behaved. But I think left to their own devices long enough things would surely get out of hand! Isabella reminds me so much of her mother when she was that age. Incidentally, when I'm around Manda & Jess together I tend to want to call Jess by Manda's name. They remind me a lot of each other. Of course my sister Sue gets my name and her oldest daughter Tanya mixed up. When we're all together she calls us by each others name. Quite often what she's saying doesn't seem to fit the name she put with it. So after it happens enough times, when Sue says one of our names, Tanya & I just look at each other and shrug. We figure eventually Sue will figure out who she really wants to talk to!
So back to today. Isabella had a tiny tube of chap stick. Pretty cute. She told me it was for their lips when her and Jordan were "skinny." (Yes, they share the chap stick. But my siblings and I all shared a drinking glass at the kitchen sink when we were growing up. We still tend to drink out of each others glasses.) We didn't really understand what she meant, but Jess and I both started laughing because she was so cute when she said it. She finished explaining it to us, "you know when you get loose skin on your lips." By then I was laughing so hard I never thought to tell her that most of us just call that chapped lips, she can have "skinny" lips if she wants.
Manda had me check out her new camera. I had to take a lot of pictures to do that! Tomorrow when I see her I'll have my computer with me and get the pictures from her card. Some days lately Dad seems to be more distant. I really don't know how to explain it. Jess is making a purse. It looks pretty neat. Jess is going extreme bowling with Sue's family tonight. I'll go in when I drop her off and visit a bit.
Thursday, January 1, 2009
I just sent an email to all my family. About a year ago I got Dad a Presto email machine. Usage has dwindled to almost nothing and that is sad for Dad. So I decided we would sign up for a schedule and that way Dad should get a couple of letters a day. I reminded them that he can't go out into the world unless someone shows up to take him. We need to go to him. I hope everyone does this. He doesn't care about just the big news, everyday life news would be sufficient. I hope they all know that I'm not upset with them, we just need to pay more attention.
Bill probably has to go back to work tomorrow. While it'll make it easier on the checkbook it'll be tough on him. And I think he has barely slept in a couple of days or more.
I have my letter ready to email to Dr. F asking his opinion on BLAs for J&J. Hope I get a favorable response.
It feels good to have the whole day off with no obligations.