Tuesday, June 30, 2009
Not sure whether I'm nervous, scared, relieved, worried..... Just don't know what I feel.
What I do know it that this is the surgery that is probably going to change our lives the most. In what way, I don't know yet, although many scenarios run through my mind. Some good some bad. Some really bad.LOL
Jess seems to be doing okay on her lower dose of hydro. Two days now, we'll see how it goes. She must of been retaining water on the higher dose because today she looked smaller than the other day.
She has been helping move a hardware store. My boss & her husband also own a hardware store. It's moving to the south end of town. They are trading a building that they own for the building they are moving into. They've been at it pretty steady for over a week now & Jess is holding up. The twins and various others are also helping. I think they now officially have everything moved.
In a few weeks we'll start to move Colby Photo. We will be right next door to the hardware store with a doorway between the two. I'm looking forward to being moved but not to moving. We've been in the same location for sixteen years and have accumulated a lot of stuff. It will seem strange to be out on Range instead of on Main St.
Monday, June 29, 2009
I have heard it said that some doctors discourage too much reading on the internet. Some days I would agree as there is a lot of incorrect info out there. For instance, I found this today.
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.
I found it here http://www.endocrine.niddk.nih.gov/pubs/cushings/cushings.htm
I would think that they should know that those are symptoms not causes. And it is on a NIH website. Oh my. Now wonder everyone, except the patients, are confused. Maybe someday the medical world will catch up.
Jess weaned some on her hydro today. We’ve been thinking for several days that she was too high. She couldn’t sleep last night and she was pretty emotional off and on yesterday. She dropped from 20 mg in the morning to 15 mg. We figured that if it was too big of a drop she could always take another 2.5 mg. I think she did okay, we’ll see how it works for a few days.
Bill is coming home tomorrow morning when he gets off work. He’ll have to go back tomorrow night. He needs to pick up some prescriptions I picked up for him. He gave in a few weeks ago and asked the doctor for some heavy duty pain meds. He said if takes enough it almost makes the pain bearable. And truly, he’s no wimp. Hope his upcoming surgery gives him some relief.
I think I must be warped. I’m sitting here watching Two and a Half Men. It is so strange and I find it so humorous in a warped way.
Sunday, June 28, 2009
Still messing around with all this. I found Windows Live Writer. Another blogger posted about it. If you’re interested in using it go check it out on her blog, she’s got a great quilting blog.
I have found the best thing about it is that I can move photos around inside my post. I have never been able to do that with Blogger. I think I’m supposed to be able to but it has never worked right. So if I was putting photos in my post I had to plan and put the photos in in reverse order that I wanted them to show. If I did it wrong or changed my mind I just had to start all over. Using Live Writer, I can just move the photo.
I’ve never known whether it was Blogger or my computer that was causing the problem. But it no longer matters because I can use this program and it posts straight to my blog.
There are some other cool features that Windows has that I’d never checked out until today. I’ll have to look into them a little closer because I think there are a few that would come in very handy.
The one weird thing is that when Jess opens my blog, it doesn’t have the different fonts. Makes me wonder if anyone besides me sees the other fonts I’ve been using that aren’t on blogger.
So, now all there is left of this post is to look at the photos!
Since I’m playing with my blog today I’ll show more old photos. I could find no photos of Sam by himself, not even on his birthday. What I have noticed is that there are a lot of Myrna by herself. That makes sense as she is the oldest. I am number five (of six) and the photo below, with three candles on my cake is the first one where I have the frame to myself.
I do understand that. I only have two kids and take a lot more photos than my mom did. I have so many more of Justin when he is little than I do of Jess. But to make up for it, I think there are more of her as they get older and less of Justin.
Judy, age three
Myrna with what looks like 10 candles on her cake. I don’t think there is a candle hiding.
We’re sure this is Sue. It looks like there are only two candles on her cake. So this is an example of why we can’t go by the dates on the side of the photos to help us figure out who is in the picture. Sue was born in Nov. of 1955. Look at the date on the side of this photo. I decided that the dates are only good to eliminate anyone that hadn’t been born yet.
Elsie was turning six. I like the way Sue is peeking out the door. This couch set on our front porch for years and got very ratty. Thankfully we lived in the country and not many people saw it!
Looking at these old photos makes me really stop and think about how the house has changed over the years. It’s hard to explain to someone that didn’t grow up there. At first the photo of Elsie looks like it was taken on our front porch but I’m sure Dad has said that he built that end of the house sometime after Sam was born in 1957 so it wasn’t there when Elsie turned six. Besides, our front porch/living room doesn’t have full length windows like the photo. The only windows like that on the east side of the house are in the dining room. It now has a porch in front of it, so that means the kitchen porch wasn’t always part of the house.
I recently scanned some old photos that I got from my mom years ago. There may be a few more I need to find before I can put them on a cd for my siblings. Granddad (maternal) is holding me and Myrna, Sam, Sue & Elsie are gathered around him.
I really like old photos. My mom didn’t take a lot of photos. At some point my oldest sister got a camera and took a lot of photos. Unfortunately those photos somehow got lost over the years. I also took a lot of photos starting when I was about 10 or so. I’d bought myself an instamatic. But since I’m one of the younger children, there are a lot of years lost between Myrna taking pictures and me taking pictures.
In this photo, Sam, myself & Sue are with Elsie, celebrating her birthday. I’m guessing that Myrna took the photo.
At the moment I’m just kind of testing out a new way of posting. It gives me a lot more fonts to play with. I’ve always used the same one but am getting tired of it, it’s boring, although very easy to read. So I think I’m going to start messing around with fonts. And see how this actually posts. It may not look anything like what I think it will.
Saturday, June 27, 2009
My niece Shanda was the judge for this show. There is never a problem with her judging her cousins. I think she may actually expect more from them.
She is timing barrel racing.
Friday, June 26, 2009
But anyway, it's there now and we can get on with the business of setting up surgery. This sounds really stupid, as it was only about a year ago I did this for the kids, but I really can't remember how this all works. I can't remember what tests need to be done pre op. Guess I'll find out.
Lately I keep looking back over this long Cushing's journey we've been on. My feelings change - a lot. Mostly, I'm thankful that we've come as far as we have. Other times I just get angry and wish that none of this had never happened. Then I think of all the knowledge I've gained. Of course most people go through their whole life and have no need of this knowledge!
I've changed in so many ways. Probably the best is that I have learned to stand up for myself, or in this case for my family, pretty much the same thing though. I couldn't do that even three years ago.
At the moment I'm writing a letter in my mind. I need to send it to our (now) PCP. He was our PCP back when I was first looking for answers for Justin's health problems. He was the first doctor to dismiss the problems. He had a comeback for everything. So we moved on, as I was determined that someone would take us seriously.
Through a turn of events in the medical community, we recently had to change PCPs again and are right back where we started. Dr. M may be on the way to redeeming himself. He did pretty good with Jess while she was in the hospital. And is following up with her.
During one of her hospital stays, the subject of Justin came up with Dr. M. He asked how he got a diagnosis and if he (Dr. M) had missed anything. I couldn't really say much when he asked as he was making rounds and had all the troops with him. It just didn't seem like a good time to tell him that he missed all the obvious, central obesity, moon face, stretch marks. And those were just the physical symptoms.
Also, I have a hard time saying things like that in person. But if we're going to continue to be in his care, I really need to get this off my chest. I want him to know that he really should have paid more attention to Justin and me. Please, don't be so dismissive of your patients.
I have to get it on paper and then actually mail it. I think we'll have a better "working" relationship once I get it off my chest. Of course an apology from him would go a long way but I won't hold my breath.
Another thing I learned through all this, I no longer just follow the doctor. Funny, I did for years with my own health though.
Wednesday, June 24, 2009
Sunday, June 21, 2009
J&J both went with me to take Dad to lunch yesterday. Justin only goes sometimes and Jess hadn't gone with me since the Saturday before we left for Milwaukee. Actually I think I have only been out to take Dad to lunch once (before yesterday) since we returned from surgeries.
Bill kind of gave me a scare last night. He's staying in Plainville because it's close to the rig location. I usually call to make sure he is up in time to get to work. He has such a hard time waking up if he ever gets into a deep sleep. By the time he answered his cell he had 77 missed calls from me! Yes, I was getting worried. I didn't know if something had happened to him or if he just wasn't waking up. I didn't know whether to worry that he was in bad shape medically or just worry that he wouldn't wake up in time to make it to work. If he ever gets rid of Cushing's I hope his sleep/waking up problems go away.
I'm actually getting some stuff done around the house today. It's not real noticeable as there is so much that needs done, but it's a start. When it cools off some tonight I really should go out and mow. UGH.
Earlier today I went out to the Experiment Station and took some photos. It's one of my favorite places to take pictures.
Friday, June 19, 2009
Magnetic resonance cholangiopancreatography (MRCP) is a medical imaging technique which uses magnetic resonance imaging to visualise the biliary and pancreatic ducts in a non-invasive manner. This procedure can be used to determine if gallstones are lodged in any of the ducts surrounding the gallbladder.Hopefully, either something shows up or the labs fall back into line.
Bill's staying in Plainville while the rig is on location there. Things aren't going the best with work. Besides him being sick, there just hasn't been as much work as usual. Starting now, the company is no longer paying any expenses. Since a rig moves from location to location it sometimes is a long distance from home. So the company has always paid mileage if the rig is over a certain distance from your home. And if the rig is located over a 100 miles from home they will reimburse some for a hotel room. That will take a bite out of our budget now.
But some companies have been laying off, cutting wages or the company is paying less of the insurance premium. All in all, at the moment if you work in the oilfield, it's not the best of times.
I wonder how it will all work out when Bill is off work for surgery. Of course I really wonder how long he will be off. In my worst thoughts, he's not able to return to work.
I need to make a list of all I have to be thankful for because at the moment it just seems like bad on top of bad.
Wednesday, June 17, 2009
We got pathology reports from both kids the other day. I don't have the exact numbers in front of me but both kids had adrenal glands that were more than twice normal size. I do remember that Jess' were a little bigger than Justin's. I guess overwork causes over size!
I think Justin is thinking of going back to work in a couple of weeks. I just wish he felt as good as Jess seems to feel. I think it will come with time.
Sunday, June 14, 2009
She's eaten a fair amount today and things are still good. Almost hate to get my hopes up.
I really think it's time for her to wean some.
I'm thinking of calling the doctor tomorrow and asking to not have her test scheduled. At this point I think it would be a waste of time.
I need to get Jess and Justin together for a picture. I want them to wear the same shirts they wore when we had our initial appointment with Dr. Chiang. Since we took a photo with him then, it would be easier to compare how they are doing.
I've called MDA to start the process of setting up Bill's surgery. Wonder if they've changed things in the year since I set up the kids. They never asked for labs, although when I asked, she said I could fax them if I wanted. I was just to send the CD with his MRI.
Supposed to rain again tonight. I think this is the wettest spring we've had for a long time. We haven't even had to water our lawn. Although a lot of other people are watering. This is one of my pet peeves. There has been talk for years about our water table getting lower and lower and there are still many people who waste a lot of water with their automatic sprinklers. So annoying, when I'm doing papers in the morning I see sprinklers coming on and it's either raining at the time or it just quit. I think they should take the sprinklers off of automatic and turn the sprinklers on manually.
Saturday, June 13, 2009
Sister, Tanya, mom, Sue, Shanda, and mother-in-law to be, Jane - good looking group
Friday, June 12, 2009
I know this makes it sound like it's all about me, but it's not really. Cushing's and all the aftermath affects everyone in the family. I can really only tell it from my view point, which is not that great a lot of days.
There were days I was so afraid that this might be Jess' life from here on (but she said she wouldn't blame me until after I was dead!!LOL). That would make me so sad - and angry. It's now been a little over five weeks since her BLA. It was five weeks ago today that she started throwing up, and it still continues. Things are improving. I think she only threw up once today, very early this morning. It wasn't much. She seems to feel better, most of her lab work is starting to fall back into place. We'll check it again next week. Hopefully no more hospital stays. She is able to eat some, but not much at a time.
I expected that there could be some problems after a BLA but five weeks of vomiting was not on the list. For some reason I had always expected that it would be Justin that would have problems. In a way that would of been so much harder since he doesn't live with me any more. But I have figured out that I think he is listening to his body more closely than he used to. I think (hope) that he has figured out that having no adrenals puts his life on a little different level.
With Jess being sick I was starting to feel a lot like I did when I was first looking for answers for Justin, which was either three or four years ago. I lose track. I didn't realize that I was starting to forget exactly how desperate I was back then. I realized it had gotten a little easier over the years because I found direction and learned how to proceed through the medical community and found a support group. But I was back at square one again and feeling that same desperation. The biggest difference was that this time there were people to support me from the outset.
My theory (at the moment) is that she did have a mild case of pancreatitis that is now correcting itself. We'll see. If her numbers improve more next week (and she does too) I will know that I'm right. Maybe not proven, but settled in my mind.
What has surprised me is that this has all made me so angry, not at anything specific, just angry. I expect that will go away with time and as Jess improves.
People have been so kind, but the thing that always got to me was that they don't really know. They think they do, but they really don't understand how things just pile up on top of each other and everything affects something else in life. When things are going good (when?) that just means that things are better but when things are going wrong and it piles up - well it just turns into a mess.
I think I'm getting angry again.
Jess learned last night that in the time we have been gone from church (should be back this coming Sunday), Dr. Matchell's family has started attending. That will seem just a bit odd as the jury is still out on him. I can't remember how many times he has told me in the last three weeks that we need to find an endo. Oh really? Duh. But do you have any idea how hard that is? The very closest one is three hours away. He says this shouldn't be hard, this is what endos specialize in. Oh, yeah, I'd forgotten they know so much. I'm not sure he understands that a first appointment with an endo really is just to size them up and see if they have any idea how to manage the kids health. The first one I pick to go to may not turn out to be the right one. It's like each first appointment is really an audition. We just hope we get lucky the first time.
Monday, June 8, 2009
I was gone for about 1/2 an hour and when I got home Jess had thrown up while I was gone. I no longer know what to think.
I think I had more I was planning on saying but can't seem to think of it at the moment.
Friday we thought things were getting better, she seemed to feel so good and went many hours without throwing up. But that has changed. I think at the moment they are going with the theory that severe acid reflux is causing the vomiting. But she is on massive doses of protonix (IV) and it doesn't seem to be helping all that much. Although she isn't throwing up quite as much as when she was admitted to the hospital.
Today she gets a referral to a GI. Hopefully Dr. Matchell will get to talk to Dr. Johnson. I hope he has ideas. There is talk of doing an Endoscopic retrograde cholangiopancreatography (ERCP).
There are days I worry that this is what her life will always be. I feel so bad for her.
My computer is having a problem with Blogger. Sometimes it won't open blogs, including mine. I can no longer copy and paste. Annoying as I can't even copy links. Oh well
Tuesday, June 2, 2009
Two countries salute chocolate on their national coat of arms. Fiji features a cocoa pod and Ghana features a cocoa tree.
Bill has been gone since Saturday. The rig moved to a location that is over two hours away. It's easier for him to stay in Hays. I was sure that I'd get some house cleaned while he was gone but not so far. I sit around and stew about why Jess has been vomiting for almost a month now. I keep searching for answers but so far have none. The doctors don't seem to either.
I posted her labs on the board and am getting some ideas. Mainly it's reinforcing my ideas about either her gall bladder or liver. I just feel so bad for her. In fact, in some way I feel responsible. I suppose because this started after her BLA and I was the one that okayed that. Every morning I wake up hoping that she will of made it through the night without throwing up. Every morning I find out she hasn't made it through the night.
We will get to the bottom of this.