Found the results of Jess' second UFC in the fax machine today. Guess I missed it yesterday. It was 92 (94?), top of range 34. Two high UFCs & three high midnight serums.
No results yet from Bill's stress test. I thought they said about three days. Oh well, They'll come.
Jess and I found a 3T MRI machine in Denver today. That would probably only be exciting to someone who wants a very small tumor to show up. That would be anyone with Cushing's. I'm guessing we'll be utilizing that facility. I'm sure that Dr. F will want another MRI. Just in case someone needs this info - http://imageoneimaging.com/default.asp It's the one on Lowry that I talked to. I actually found out about them from another imaging center.
We'll see what tomorrow night's call with Dr. F brings. And then wait for stress test results next week.

Okay things always change.
Several weeks ago I faxed results of J's &J's & Bill's blood work to Dr. F. Today I got an email that said "Let's have a phone consult for all the Kennedy's." So maybe they won't have to see him in person....? Then an email from Lynne later that said he had time this Saturday. I paid my deposit and guess we're on. At the moment I'm not even nervous about it, just weary.
I figure if we can do this by phone it's cheaper than plane tickets and an office visit. I guess it's good to take the phone appointment as we don't even yet know if Bill can have IPSS and AVS. No results from the nuclear stress test yet. I bypassed the local doctors office, who is to receive a copy, and called the Debakey Heart Institute. They called back and said it hadn't been read yet. Would call me when it was done.
So we wait.
Did get the last saliva for Bill today. It was normal.
Got one of Jess' UFCs. It was high. I think it was 87 with 34 being the cut off. First high UFC she's had. The 17 OHCs weren't done yet and one UFC seems to be missing at the moment. Maybe it'll show up by next week when the 17 OHCs will be done.
I'm so proud of myself. I figured out how to make the Cushing's ribbon and address at the top of my page clickable! I know it's probably elementary to many, but big advance for me.

The house smelled good when I got home from work tonight. Jess had baked brownies. Yum.
At the moment she's on a conference call with the other Girl Scouts with the Microsoft project. I'm not sure what the call is about. She needs to be at AWANA in a little bit. The high school and middle school kids are helping put on the Fall Festival for the little kids.
I haven't seen Justin today so I don't know if he's feeling better. I sure hope so.
Bill called after they got the rig set up. This is the day he works a morning and then also his regular night shift. It's not as tough on him as the next day seems to be.
When he called he just went on and on about a lot of things, the car needing fixed, the motel he's staying at, the guys at work, etc. Finally he said "I think my testosterone is high." I said "I think you mean your cortisol." He said "Well whatever, but I got to work this morning and _____________," I can't remember all he said. But anyway, my point is that now that he understands what's going on with his body, I think he tries harder to control it. Because while he was going on and on, he didn't really sound mad just VERY annoyed. I guess that's good.
No stress test results yet today. Maybe tomorrow.
I did get results of three of his salivas. All high. They were something like .125, .250 and .1??. I just know they were all more than .0900. So that's good.
Tomorrow they should have his last saliva and Jess' two UFCs. Since her midnights are much higher right now, it'll be interesting to see if she gets a high UFC. I'm glad Susan had posted that they now ask for Dr. F's account number. Would of really thrown me otherwise.

Hopefully by tomorrow or the next day we can get the results of Bill's test and then fax them to UCLA and Cedars. Praying that there is nothing to prevent him from having the IPSS and AVS. Of course now I'm hoping we can set the date (presuming there is a need for the date) a little later than what we're working on. The date is getting close enough that the plane tickets are now about $100 more per person. I don't really want to shell out another $400 for the trip.
Plus Jess is probably heading to the big city of New York for the Girl Scout/Microsoft program she is working with, on the Friday that we would be in LA or heading home. It could be tricky scheduling to get her from LA to New York and then back to Denver. Thankfully Microsoft picks up the tab, it's their baby. I'm excited for her.
Bill goes back to work tomorrow. The rig moved to the new location. He's getting his things together. Been home since Saturday morning. Sometimes there is no break between locations and that is really hard on him.
Jess is at basketball practice. She's playing with the local home school team. While technically she is not home schooled, they invited us to join the association. She knows a lot of the kids that will be playing. I hope she enjoys it.
Justin was very sick today. Ugh, I hate that.
Well, I'm not quite as upset with my friend as I was when I wrote a few days ago. The one thing that conversation really brought home to me, is how much I love having the Cushing's board. I truly don't know where we'd be without them. And while we all walk our own journey we all have a good idea what the others are going through. And while I have never had Cushing's I do understand what it's like to live with a very debilitating disease and going through life feeling very sick all the time. Thankfully I'm doing okay now or I would be no help to my family

Bill & Jess are on their way to Hays. He has his nuclear stress test today. Last night it occurred to me that it probably wasn't a good idea for him to go that far by himself in case he had a bad reaction to the test. I don't know why it took me till the last minute to think of that.
There is no one to cover for me at work today. I work by myself most days. So Jess, being the good daughter she is, is going with Bill.
I'm praying for a good outcome.

And we're still waiting. Bill had his EKG the other day. It was abnormal. Got sent to a cardiologist for a stress test. Cardiologist said bp is too high, can't do your stress test. Come back Monday and we'll do a nuclear stress test.
I have no idea if these results are just used as a guideline while doing IPSS & AVS or if these results can prevent him from having the procedures. I suspect the latter. That's sort of scary. If he can't have these procedures I don't know what the next step is. But I do know one thing, he's not getting any better and won't until he gets a diagnosis of some kind and treatment.
Talking with a friend the other day right after I got the news about needing the nuclear stress test. She wondered how his heart problems came about. I said if he has Cushing's I'm sure that's the cause. Oh, not near as serious if it's not "regular" heart problems. Maddening. She also said my life feels a lot like yours right now. Oh yeah, right!! Tell me, are your husband and kids healthy, any chance you'll someday be loosing your health insurance because your husband is too sick to work? Thought not. Don't tell me your life is like mine.

It's finally down to the nitty gritty of setting up Bill's IPSS and AVS. At the moment the IPSS is set for Monday, Nov. 10th. I say at the moment because this will only work if Cedars will set up the AVS close to that date. And while the gal told me it would probably work, I don't know for sure because they WILL NOT (yes, she was that adamant) set up with the patient (or his wife). It must be set up through the doctors office. So another email to Lynne. She answered rather quickly and said but I sent them all the forms and reqs, what more do they want? I guess they want to talk to you in person just so you can turn around and tell me! Oh, & when you talk to them these are the dates that will work. Lynne must think I'm a pain.
So IPSS on Monday, Dr. F on Wednesday for Jess (& Justin?) and hopefully AVS on Thursday.
I only figured out today that Bill needs to have an EKG done before these procedures. That's different than it was in December when the kids had theirs. So tomorrow I need to go to early morning walk in and see if Andy can get one set up in Hays because that's where Bill is staying at the moment. Then hopefully fast results so that I can get them faxed.
I just pray this all gets sorted and set up in a timely manner. Then I can buy airline tickets and book a room.

My SIL, Jackie told me something scary yesterday. Their family lives right behind my dad and her girls quite often go with us when we take Dad out for lunch on Saturdays. If all three girls go I take Jackie's van because we don't have enough seats for three extras.
Two weeks ago, all three girls went with us so we were in Jackie's van. We were going to the Colonial Steakhouse in Oakley and Dad suggested that we take the dirt (and I mean real dirt) roads. I thought the van sounded a little funny but it's hard to tell on dirt roads. I turned onto the highway only about a mile from the Colonial and the noise was really bad then. I real clunky sound. When I mentioned that it sounded funny one of the girls told me that the tires had just been rotated and "the man said it could make noise." I didn't think that sounded quite right but.....
So yesterday when we get there to pick up everybody, Jackie asked me if the van had made funny noises a couple of weeks ago. I told her it had and I mentioned what the girls said.
Jackie said that after she'd left the shop the day she had them rotated she didn't think it sounded right and went back to the shop and they just brushed her off! Never even checked to see if something was wrong. Now this is a shop that I've always thought had a good reputation. My brothers do business with them sometimes. I probably would if I lived over there.
I guess the day after I had driven it she was on her way to church. I didn't figure out whether it was regular services or evening AWANA. The church they attend is about 30 - 40 miles from their place. Thankfully this happened on the dirt road that everyone has to travel to get to the church so someone would be along to help (my brother was away for awhile). Plus she wouldn't of been driving as fast on the dirt road. I forgot to mention that the church is out in the country. I guess the noise got really bad and I'm not sure exactly what happened to make her stop. But when she got out and looked one of her tires was coming off and all the lug nuts were missing! Another tire was missing a lug nut and one tire was missing two lug nuts! And the one rim was ruined. Good grief, what did these people do when they rotated her tires. Oh, they quit before they were done.
I'm guessing the outcome wouldn't of been as good if she'd been on the highway or I-70 going anywhere from 65 - 75 mph.
My sister told Jackie to let Bob (her husband) go in and talk to them before she went back in. My initial reaction to that was, that if it was me I could fight my own battles. But then I realized the type of guy they're dealing with here, the guy that did the work, not the owner, probably is the type that needs to hear from her husband that he is VERY UPSET because his family could of very easily been killed because of negligence. I bet they take her a lot more seriously from now on and I would hope that they double check their work.
The tire shop will be picking up the towing bill and I presume paying for any repair that was done elsewhere. The van was towed to the closest town which wasn't where she'd had the work done.
Thankfully no one was hurt.

Justin was over last night. Before he left he showed me how some of his stretch marks are turning bright red again. Also the acne he has on his face looks more cystic than regular acne. I also know that he sometimes still doesn't get to sleep until morning. Raised a few red flags for me. I hope I'm just being paranoid but the stretch marks have me very concerned.
Don't know whether to cry or just sleep it all away. Actually, I'll probably just buy him a ticket to LA. Told him he needs to do some midnights this week.
Not really what I wanted to start the week with.

Jess & I went to Hays today for my appointment with Dr. J, my great GI. The guy on the "identity theft" poster in the Post Office looks like his evil twin! I find that amusing.
The van has been giving me trouble off and on for a couple of months. The shop couldn't figure out what was wrong because they couldn't get it to replicate the problem and they drove it out on the road for about forty miles or so. They said the only error code they got (because my "service engine soon" light keeps coming on) says "lean". Said it was there many times. Means there wasn't enough fuel. I was already pretty sure of that because when you're driving down the road, the engine sounds good and you start losing power, I just presumed it had something to so with the fuel. It seldom does it at low speeds. I thought I was onto something as it seemed like it only did it when the tank was full, have no idea what that would mean. But that theory was blown today as I started out with just half a tank. A little ways out of town the problem started again but with a twist. I didn't lose near as much power. Used to be that I could have the foot feed tromped to the floor and still slow down to about 20 mph. Tell you what when your gas pedal is on the floor and the "problem" corrects itself - watch out! Kind of plasters you against your seat.
Well, today it would only drop down a couple of miles and then you could feel it surge up again. Very annoying and worrisome. Really messes up the gas mileage too. So I figure we either forge onward or I miss my appointment. Stopped about halfway there and when I started out again, no problem. How annoying. On the way home it started up again so I had Jess pull over and we shut it off for awhile and then everything was fine. Better go talk to the shop tomorrow.
My big concern - how much will this cost. I'm sure it won't be cheap. Not a good time when we need to be getting to LA.
The day hadn't started the best as I had an email from Dr. F's office, a rather cryptic one that bothered me somewhat. I know I'm probably a pain. I don't email that much, but with three people as patients, well.... I'm trying to get Bill's IPSS and AVS set up along with an appointment for Jess with Dr. F, which I have scheduled. I just don't know if Bill's can be set for the same week. They really need to be close together as we can only make one trip. Not easy. Especially since the gal at Cedars doesn't want to talk to me she wants to communicate with the doctor's office. This mornings email indicated that it was up to me to get this taken care of. While I understand it should be, I'm wondering how to do that when no one wants to talk to me.
Then at work I needed to get everything possible done before I left around noon for my appointment.
All in all a stressful day. We got to the medical center, got upstairs, checked in, went to the restroom, and was immediately called in for my appointment. They're usually pretty prompt. So then I get to see how much weight I've gained. Not as much as I'd thought. My first phase of stress eating is, I don't eat without getting sick. A couple of years ago I started loosing weight and lost quite a bit. Enough that some people were asking my boss or sisters if I was okay. Well that phase ends eventually and I start eating, preferably sweets. That takes its toll. And I quit walking about a year and a half ago. So....I really need to start eating better and getting some exercise.
This all leads up to my blood pressure. I don't think I've ever seen it higher than 121/7? in a doctors office. Stays very consistent. I always ask what my bp is if they don't tell me. She said 150 over ??, I have no idea what the bottom number was. I was still processing me having a number of 150!!! That would belong to Bill (if he could get it that low anymore!). I always thought the only thing that raised my blood pressure was listening to rap music! I really dislike the beat in rap music, drives me crazy. Reminds me of Justin practicing the piano years ago. I think his recital piece one year was "Indian Trails". He drove me crazy with that song. And of course he liked it.
The good news is that when I took my bp when I got home it was 108/82 and I've checked this meter against the doctors office and it's very close. I also had another email about setting up the appointments. I really hesitated to open it. Dealt with all the rest of my email first. Well, this one was very helpful and indicated that it could all get worked out. She told me how to probably get it all set up in the same week. Then once Cedars and UCLA are set up, if it's not the same week as Jess' appointment with Dr. F, she'll help get her in for the week we're in LA. Thank goodness. The tone of the email this morning didn't really sound like the ones I've gotten before, maybe it was due to the late hour. Glad she sent a followup as I felt like I was hanging in the wind earlier, wondering how I'd manage this all in one trip is no one was willing to help me.
Dr. J is having me try a nasal vitamin B12. I asked if there was anything other than shots. He said he didn't know of any prescription patch. I asked what he thought of OTC B12. He said - not good. The nurse gave a shot today. Need to remember to get to Palace in the next few days and get the prescription. Hope it works and I need to remember to use it faithfully.

Oh, go back in four months instead of six. He didn't tell me this, his nurse did when she brought me my new appointment card. Wonder what's up. I'm thinking that he's wanting to keep a better eye on me with all that's going on in my life.

Jess is at the local high school taking PSATs. It felt really weird to take her out there as school was starting this morning. Makes me think of all those meetings I attended early in the morning for Justin.
Bill called and said they finished this location and he will be home today. Hopefully it rained enough that they can't move tomorrow. He really needs more than 24 hours off to rest up. Locations have been back to back for several moves now and he must be exhausted.
I was just watching a guy on the Today Show walk a tightrope 14 stories in the air. He then rode a bike across it. I really couldn't watch that the bike ride. He's saying he's going to walk across the Grand Canyon next spring! What balance he has.
Tomorrow I go for my regular six month checkup with my GI. These are usually easy appointments as I'm regulated pretty good unless I forget to take my evening dose for a period of time.
I like this doctor, he has helped me so much. I need to remember to ask his opinion of OTC B12 as compared to prescription. I wonder if you can get prescription in patch form. I'd like that better. Also am wondering if the B12 deficiency has anything to do with my stiff and aching joints or am I developing arthritis. I've been told be doctors that I'd be a perfect candidate for RA since I have Crohn's.

Finally. Today I got Bill's test results, so things can move forward. When Bill was going out for his physical, I gave him a printout that Dr. F's office sent me about setting up an IPSS and what tests need to be done ahead of time. I sent it just so they'd know what tests needed to be done. This morning they told me that they had faxed the results to UCLA Med Center.There was a fax number hand written on the paper. But this p.m. when I called UCLA and told them I was faxing results to them, I was given a new fax number which happened to be one digit off from the hand written number on the paper. I asked Pennye if that was one of their fax numbers and if they'd received some results yesterday that they didn't know what to do with. The answer to each was, no. I guess someone, somewhere got Bill's test results and wondered what they were for.

I've emailed Lynne also and let her know I sent the results to UCLA but that Cedars said everything has to come from the ordering physician's office. So I faxed the results to Lynne so that she can fax them to Cedars. Seems like an extra step there, but as long as it gets set up.

I did mention to Lynne about the date I have set up for Jess' appointment with Dr. F and asked if it would be hard to get Bill's testing the same week. I'm guessing she can get that done.

So now it is out of my hands. I've done my part for the moment.

No test results yet today. I'm afraid the lab messed up. They've been known to before. We usually use the hospital's lab and wish we would of asked for these blood tests to be done there instead of is Dr. S's office.
I didn't think it took this long last year when the kids had the same workup before their IPSS. So I looked back and they had the physical on a Tuesday and I'd faxed the results to UCLA the following Monday. Bill had his physical last Monday and this Monday is over and no results.
I'm just getting really antsy. I want to get the tests set up and plane tickets bought. I want to know it's going to happen. It's a step closer for Bill and he's getting a little worse all the time. Or maybe it's just that he never really gets any time off at the moment. They finish a location and the rig moves to a new location the next day. He really isn't in any condition to keep that up.
I know it'll all work out in the end - but I want it now.

Jess' third midnight serum; cortisol 23.2, ACTH 37. Three tests, three highs. There's no doubt in my mind now.
I took the liberty of emailing Dr. McC after I'd faxed the results to Dr. F. I was mainly curious whether she was a good candidate for a second pit surgery. He (being cautious as he is since all the data isn't in, no MRI yet), says he thinks probably she wouldn't do well with another pit surgery as he thinks the only option might be to remove the gland and he wouldn't want to do that on someone so young. But he says we'll all consult after seeing Dr. F and when all the data is collected.
She has a couple of UFCs ready to send in.

Wednesday morning as the kids were leaving early for a chiropractor's appointment, they discovered that Jess' driver's side window was shattered. I just assumed that it had been accidentally hit. Later in the morning someone from the PD brought in a flier they wanted to leave on the counter. It was talking about car windows being shot out early that morning. I guess the department had had over 25 calls by 8 a.m., about broken car windows. So I decided I'd call the PD since it seemed it wasn't an accident. Yesterday when an officer came in to talk to me about what I might of seen while out doing the paper route Wed. morning, he said there were 37 windows broken out, probably with a pellet gun. I'm thinking if they are caught and prosecuted and have to make restitution they better be finding jobs now. I'm taking the car in tomorrow morning, $230 dollars because someone thought it would be fun to shoot out windows. Of course the car is old enough we only can carry liability.
Justin finally got over his bronchitis and really got to work on the roof of the store. Of course about the time he really got on a roll he had to get back to work McDonald's had been closed for several days for remodeling. It's been chilly and damp since then. Hope it dries up soon so he can finish the job.
He seems to be doing a lot better, which makes me so happy. But it can be hard to watch him get better as Jess seems to be going backwards. She seems to be about where Justin was three years ago. But thankfully she won't have to wait three years for help.
I've sent all her current test results to Dr. F. I haven't been able to start scheduling the IPSS and AVS for Bill because the results of the tests he had done during his physical on Monday aren't ready yet. Actually, I think they are ready because when J&J did them last year it only took a few days to get the results. But Bill had to see Dr. S instead of Andy and I'm not sure if he realizes we need to hurry at least I'd like to hurry. When I called Fri. to see if I could go pick up the results, I was told they aren't ready for the patient to see until the Dr. signs off on them. Since this office has their own lab I guess they can do what they want. Andy knows we prefer the hospital lab for most things, but .......... I'll try again tomorrow.

Second midnight serum for Jess
cortisol- 19
ACTH - 46
That's higher ACTH than she used to have. There wasn't one for the first night of blood work. The gal in the lab messed up. She was very nice and called me the next morning and wanted to know if it could be redone. I told her we just wouldn't worry about it this time. Although it just occurred to me that the ACTH might of told us something about Justin because the replacement he'd taken shouldn't affect that. When J&J did their 8 a.m. several weeks ago, I remember Jess' ACTH was high. By then I was already suspecting she might not be cured. I think Justin's was in the normal range. But I can't remember what it was.
Bill got his physical, blood work and chest x ray today. Andy was at the hospital so Dr. S saw him. I really don't like that man. Bill wonders why I'm still somewhat bitter towards him. He didn't have to sit through the office visit that I did. Of course, if he had been there the visit would have been completely different. Dr. S doesn't seem to look down on men the same way he does with women and children.
Hope it doesn't take long to get all the results so we can start setting up the testing in LA.

Summer is definitely over. Haven't used the AC for at least a month. But now instead of just open windows, it's close the windows because it's too cool. Later you have to open them back up because now it's too warm.
I'm starting to collect sweatshirts at work. Cool in the mornings, warm in the afternoon.
But the really big sign. My feet no longer look tan - they look dirty. Wonder why only the feet do that. On the rest of the body it just fades.

Well, now that I got the previous post out of the way.............. For some reason I felt like I could write nothing else until I put that down.

Bill has hardly been home for the past month or so. The rig is down in the Hays area and the drive is a long one. So it's easier to get a cheap motel and not have such a long drive. At them moment he only knows of three more locations down there. Hopefully it'll move closer to home then. Although we don't really see much of each other when he is home. He sleeps (or tries to) a lot and he and I work different shifts. He's home today and will go back to work tomorrow night. Tomorrow he sees Andy for his physical, chest x ray, etc.

Justin went with Jess & I yesterday to take my dad to lunch. He needed to hook up Dad's DTV, or whatever that box is called that antenna TVs need soon. Dad doesn't watch much TV but would like to still have it when he wants. The good news is that with this digital conversion he now gets all three major networks, Fox News (?) and PBS. He might find PBS entertaining.

Jess is at a Girl Scout meeting and Bill is sleeping. Hope he wakes up for supper since I'm actually fixing something decent because he is home. Have a pork roast with spuds and carrots in the crock pot. Justin might even come over to eat with us.

A couple of weeks ago we took Dad to supper instead of lunch. It was pretty fun as my brother and his wife and girls went with us. His girls, or at least some of them usually go with us for lunch. My brother had been gone for a few weeks and had only been home a few hours when we got there. When Dad heard that the girls didn't want to come eat with us because their dad had just gotten home he said "Well they better all come with us then." So I relayed the message to Bob and we all went. His crew was working on equipment then headed for town. I like when the crew is home and there is activity around the farm.

I've been putting off writing this but have been mulling it over in my mind for awhile.
I have suspected for several weeks that Jess' Cushing's is definitely back. I don't know when she first suspected but she never said anything to me until the day she asked to do a midnight serum. I'd just gotten orders from Andy a couple of days before. I wanted the kids to do some midnights. I've never figured out why they use midnights to diagnose but 8 a.m. draws to see if you have a cure. Makes no sense to me. Neither of the kids had done any 8 a.m. during diagnosis. I just knew that I would feel better after seeing midnight numbers.
We did the midnights for Justin & Jess both. Later I discovered that Justin had been taking some replacements so that skewed the results. He had bronchitis & I'd told him to take some replacements since he was feeling nauseous. I just meant for that day but never actually specified. He thought I meant until he was over it. I do know that when he told me he'd been taking it for a few days he also told me that it made his stretch marks come back. Not sure what to make of that. He was taking 5 mg twice a day. But even with replacements his midnight was only 2.6, I told him that he won't do any more until he's off his antibiotics and probably after his cold is gone also. He's not feeling the greatest but think the bronchitis is gone and now just has a cold. Guess we'll see where his numbers fall one of these days.
Jess' midnight came back at 21.3! Whoa. But at least it came back high enough that we don't have to wonder. We know - it's back. Even though I knew it was back it was a different experience seeing it in B&W when I picked up the lab report. I cried. I know I can handle it but I was really hoping that they each had a cure since Bill is still working on a diagnosis. But on the upside, it's back in time that Jess can make the trip to LA with Bill and I when he goes out for IPSS and adrenal sampling. I hope I can coordinate an appointment for her with Dr. Friedman and Bill's two tests. Better than a separate trip for each.
We came up with a plan today. When I get the results next week from her last two midnights she did last week I will fax them to Dr. F along with a short note. Think I will email it all too. In the note I will explain the recurrence of her symptoms, the fact that I had our PA order some midnights, and then I'm going to tell him that "I hope it's okay with you, that since she seemed to be in a high, I had her do some UFCs." I didn't want her doing any UFCs and having the results show up in his fax machine without being able to have first showed him some proof that she needed to be testing.
So that's the plan for the moment.
I set up an appointment for Nov. 5 (?) hoping that Bill's testing can be done the same week. Tomorrow he is having his physical and testing done that he needs for IPSS. I know how to go about setting that up. As for the Adrenal Venus Sampling, all I have is a contact name. Lynne (Dr. F's office) said that was all the info she had. I know it's at Cedars and IPSS is at UCLA Med Center. So I need to call them and find out how we go about this.
Now I just pray that Justin doesn't start showing signs of recurrence after we get back from LA. I've said that if we took all the money we've spent on medical travel this past year and a half, we could of had one heck of a vacation!
Now we wait till we get the results from last weeks testing.