Cushing's Family

2011-07-01T07:20:00.001-05:00

I’ve had a couple of posts lately talking about how good the kids seem to be doing. So, I thought I put up some photos for comparison. The biggest thing you notice in the last photos of each is their eyes. There is LIFE in there.

JUSTIN

May 2006

August 2006

December 2006

May 2008 shortly after pituitary surgery

May 2009 right before BLA

December 2009

November 2010 about one & a half years post BLA

June 2011 two years plus post BLA

JESSICA

September 2005

September 2006

December 2006

May 2008 right before pituitary surgery

May 2008 five days after pituitary surgery

November 2008

May 2009 right before BLA

July 2009

December 2009

July 2010

November 2010 about one & a half years post BLA

June 2011 two years plus post BLA

2011-06-30T20:48:00.001-05:00

More background on our life with Cushing’s

Feb 14,2010

Marriage after Cushing's?

Hi,
You know how sometimes you just have to get something out and need someone to listen? Well, I'm there.
Every since you made that remark about marriage post BLA, I keep it in the back of my mind when things get bad.
Can I be nosey and ask how bad things really were? Were you sometimes thinking of leaving? Did you ever tell your husband, if so how did he react?
We just went through a bad spot last night, I saw it coming for several days but never have any idea how to derail it. Don't really think I can, when he gets high, really high, it just builds until he sits down to tell me everything that is wrong with me and that he's leaving. And believe me, when he's like this, he is the only one who has ever cared about the family and the only one who has ever done anything right. I never even try to defend myself as it just sets him off more. Although, me staying quiet makes him think that I think I'm above it all.
At least now I do know it's the Cushing's talking, although he doesn't know that. For the first 20 years when this would happen every 6-12 months I wondered where in the hell it came from. Unfortunately the first 20 years left a lot of baggage. When I would see certain signs in him I would draw back some, although that wasn't too hard as he seldom spoke unless he was mad.
He never does actually leave, sometimes I wish he would! Once he gets it out of his system he's pretty much back to usual in an hour or so. Almost like it never happened.
I keep trying to tell myself that it's the Cushing's. I can see three distinct personalities in him and quite frankly despise two of those. I keep praying that the other personality is the true Bill. I think it is, but looking back this started so soon into our marriage that I'm not sure I ever knew "him".
Looking back I can see where Cushing's was not kind at all to us & I didn't help by pulling away. Of course you can't keep setting yourself up to get told off. And you never know when that will happen. Sometimes in midsentence when it seems that everything is going fine, he will go off on a rant.
I guess I'm hoping that after a BLA and his meds get leveled out we might have a shot at being happy.
There's not many I can talk to about this. Family, while they know sometimes things are hairy, really have no idea and I can't tell them. They would hold it against him forever and I'm hoping I can learn to let it go. Friends would be the same. You seem safe as you will (probably) never meet us in person. And I don't think you would judge, having been there (or close) yourself.
Thanks for listening,
Judy

February 15, 2010

Dear Judy
I'm so sorry you're going through it and I hate to say it but as long as he has that cortisol flowing through then it is going to happen. Things were horrendous for us and my attitude towards my husband was a disgrace - I openly admit that now BUT some of the things that bugged me while I had Cushings still bug me now - so at least some of it wasn't just the hormones talking.
I did actually split with my husband, back in 2006, about 6 months before my GP suggested Cushings to me....about a year before I joined the boards. I threw him out the house and he went to stay with some of his family for a few weeks until I THOUGHT I'd sorted my head out, but things had been really wrong (in my head) for a few years before that - it just came to a climax then - Cushings makes you very negative so you don't pick up on the good things people do, only the bad and you pick away at the person, almost in an effort to destroy them emotionally - in my case it was because I HATED myself so didn't see how anyone could put up with such an unlovable person - if he had walked I wouldn't have cared, in some warped way it would have confirmed what I thought I knew - I didn't deserve his love so he shouldn't be around.
After the few weeks break we had (while we were still oblivious to Cushings) we both really made an effort together but it was so hard. Once the Cushings question came along I had a light at the end of the tunnel to aim for and I started to control the temper to a certain degree - some days it was still too much and I would let rip again though. At the worst points he was the worst human being who ever lived and I'd done nothing to deserve such a terrible husband, he was every negative thing you can say to a person - I was probably testing him OR trying to push him away as I didn't think I deserved such a good man. I've tried to analyze my behavior but now I try to let it lie in the past.
After my BLA, my personality literally changed overnight - I'd been scared stiff that it wasn't just the hormones that made me so awful but after I came round from the ops and sobbed over everyone, I got home a completely different person - a person I don't even remember being in there. I am amazed at the strength he showed from putting up with that evil bitch for all those years, purely because he knew the "nice" version was the real me, the person he had fell in love with, and he knew I'd re-emerge someday.
Judy - you must be so strong to have lived with 3 Cushies for all these years, I really don't know if I could have done it in this house - I don't know if I could have shown the same strength as you and my hubby...I probably wouldn't have coped and would have walked away - I was incredibly abusive and it scares me to look back and think what I may have been capable of. I'd like to think that anyone with Cushings can be cured and go on to have a normal, loving marriage - I know I adore him now, things have completely flipped - though the best thing is that now I'm cured, if we do have a tiff - he isn't scared to argue back anymore and I find that oddly reassuring, the fact he isn't scared of my temper anymore!
I'm quite sure you do know the real Bill - he is hiding in there somewhere, waiting to appear if you're willing to hang in there and wait. Has there been any news on plans for a BLA yet? If you've been posting on the boards about it then I'm sorry, I don't get a lot of time to go there with kids on my hands, keeping me busy lol!
I've told you before - I'm always here to listen if you need me, above all, take care of yourself - and if Bill has another rant just try to walk away for a while - go shopping, get your hair done - but have a break away from the stress - those hormones aren't good for your wellbeing either!
Love and hugs

XXX

February 15, 2010

Judy

HI,
You have no idea how much your reply helped me this morning. I felt about the same as when I first found the Cushing's board and realized there were many people just like Justin!!
I think Bill just needs a couple more highs and a talk with Dr. F and he will be cleared for BLA. He has a tumor on the left adrenal and the right secretes excess aldosterone. So one of them was coming out anyway. Dr. F would never say which one. I was hoping that his pit surgery would not be a cure so that he could have a bi-lateral instead of a uni-lateral. I was sure a uni would probably mean two surgeries, one for each adrenal which seems like a waste of time and money. Because somehow I know that just taking out one of them was not going to be a cure.
Reading what you wrote makes me so sad for all of the families going through this. I have always said that while I know the physical part of Cushing's is bad I think the mental must be worse. I have sometimes wondered how much better I would of dealt with J&J's illness if Bill & I had been able to lean on each other, but..........
Mostly I'm just praying that we get through this intact and we don't hate each other when it's all over. Yes, I do think I know/knew the real Bill. Believe me, I would never marry the man he is most days!!
I don't talk much about him unless it's test results or such. Somehow it seems too private and casts him in a bad light. I think that most of the other Cushies would crucify him for acting like that, I think it's more acceptable for the women to have rages. And the ones that didn't get upset at him would be upset at me for not "understanding." So I really don't say anything. Although I've made a couple of comments with a new guy on the board. Poor guy, he thinks he and his wife both have it, judging from a photo, I think he's right. He says when he's in a rage he WANTS someone to fight back. I think Bill might too, but that won't happen. It's like trying to reason with a drunk, nothing good comes of it!
Thank you so much. You were so nice to tell me how bad things really had been. It gives me hope. Yes, I'm sure that even with a cure there will be things about each other that bug the heck out of us but I'm not sure that they would be a threat to our marriage at that point. Right now about anything I do can at some point be a threat.
Did you also read a lot (that wasn't really there) into casual comments that your husband made? Such as if I ever say anything about money (and not even saying there is a lack of it) he accuses me of not thinking he makes enough.
Recently I told him I was proud of how he kept working even though it about killed him (his job was very physical, but he's been laid off for about 5 months now). His response, "all I am is a work horse to you so that you have enough money to spend." It's never even worth the effort to try and tell him that wasn't at all what I was saying.
So.........
Just know that you helped me a lot.
Judy

A letter or two missing here as they would be too identifying of the other person.

June 7, 2010

You make sense Judy. One problem with having various symptoms of Cushings since puberty but not getting treatment for almost 20 years is that you lose sight of who you are, you have so many moods and personalities with Cushings that when you look back you wonder which version is actually you...do I make sense? After being 2 years out of BLA, I thought I knew myself and my body - that all changed on Saturday and now I feel naive and stupid for not realizing immediately at the time that it was AI...I know nothing anymore....that scares me, especially with kids to care for. I think the enormity of everything is hitting me all over again and I feel stupid. I always assume that things I feel are anything else but hormonal, I have a love/hate relationship with the hydro so always reluctant to take extra unless I'm convinced I need to so don't know how I'll feel if I need to have more hospital or dr appointments to sort other problems out - I've been avoiding them like the plague. I've had an ear infection for months now which has made me almost deaf in one ear but I still can't bring myself to get treatment. That's verging on a phobia isn't it? Think I need a slap and a shake! X X X

June 7, 2010

Judy

If I was closer I could do the slap & shake! I thought of it a time or two with Jess but thought better of it!
I think I know what you mean about different versions of yourself. Jess had a very defined personality until a few years ago, about the time Cushing's really took hold then I saw many personalities. At least I knew what it was. Otherwise it would of scared me because it was so much more extreme than normal teenage hormones. I could literally FEEL her highs coming on. It was a little scary but it was nice to have a warning. I can also do the same with Bill.
Justin was a little different as he kept to himself so much once his symptoms got very bad. I felt very cheated though because I felt like I was just starting to get to know him (he was 15-16) as an "adult" & then he changed so much I never felt like I knew him. I will say that of the three he was the least argumentative. But that was traded for suicidal, delusional & having hallucinations. So not much of a trade off!
Not sure if I've ever known Bill or just versions of him. Some of which I like much better than others.
I do understand the doctor thing, but............. Deaf is not good & XXX is probably right about it lowering your cortisol. Heck, I never let Justin see a doctor by himself until we were here in Milwaukee ready for BLA. I felt safe letting him see Dr. Chiang by himself pre op. He was 20 yo by then & never had seen a doctor by himself!
Don't be too hard on yourself. Sometimes it's harder to see when you're close to the situation. I can quite often spot the changes in Jess & Bill before they know it. My first sign of a major Crohn's attack coming on is depression, usually for a few weeks before physical symptoms set in. You'd think after about 15 years or so, I would recognize it. Seldom! Makes me feel so stupid & I swear I'll do better the next time. Ha
You'll get this figured out, hopefully before vacation.
But tell me why it takes so long to convince someone they are in a low and need more hydro not more pain killers. Bill is going to be much worse than the kids. Jess was educated, Justin just did what I said (unless he forgot) but Bill doesn't know that much about it and doesn't listen either. ARRRGGG! We'll get it figured out.

June 8, 2010

I tell you why you can't convince someone they're low on hydro...because once you get so far down you don't think as a reasonable person and you decide you need more sleep, other people to stop bothering you, less stress - it's anything else you can think of but NEVER a need for more meds! Stupid, but true a lot of the time! Thanks for the messaging - you've brought me some much needed sense. X X X

June 8, 2010

Judy

Well, I hope I helped you some & look forward to what the doctor says. Besides, I need to keep you around - you seem to be the only one who understands (or will admit to it) how hard Cushing's is on a marriage! Just kidding, I'd like you anyway ☺.
Keep me updated, whether it's a message or just a post on FB.
I'll keep you in my prayers.

June 15, 2010

Judy

Bill

How are you doing now? Higher dose & meds helping? I sure hope so. I want you to be able to enjoy your vacation & of course just life in general.
Since we have discussed marriage before I thought I would tell you what's going on with the family.
First let me say, I know Bill is sick but I can't do it anymore. I don't think I ever actually put it into a coherent thought until this weekend but he has been verbally abusive for years. And while the whole marriage hasn't been bad, I just can't do it. And it's not fair to Jess.
Saturday he told me thanks for getting me to surgery, now I can quit taking my hydro & you can have what you always wanted (implying I wanted him dead). He's told me twice this weekend that he's leaving but he hasn't yet.
But he finally crossed a line. Even if he does recover from all the damage Cushing's has done to him mentally (if this is where it's all come from) I just can't live with him. Jess is staying with our youth pastor's family. They're a great family. But I know that she & I can never have a normal or even semi normal life if I stay with Bill.
Yesterday after church Jess & I went out to my sister's house to talk. Then I went & talked to our pastor. Jess said to me "But Mom, even if he gets his dose right you're still going to divorce him, right?" I hadn't even mentioned divorce at that point. Later she said "if Dad dies then we would all be free & could be happy." That made me sad.
Even Justin, who hasn't lived at home for 3 years, told me he'd seen it coming. That surprised me, never thought he paid attention. I think Bill may be the only one that doesn't see it coming. He does something like this every so often. But this time is the last.
In his mind he has rewritten our whole history to where he has done everything & I've done nothing. I don't even try to change his thinking. I feel very sorry for him but I can't help him any more, he doesn't want help at the moment.
So at some point we will separate then divorce. I had actually thought of this off & on for a couple of years. But I was afraid it would give the kids the wrong idea, if I could leave a sick husband could I also abandon them because they are sick.
He started treating them pretty nasty most of the time a few months ago. Jess tries to seldom be home & Justin seldom comes to visit. I think we all kept thinking that after surgery he would eventually start feeling better, his mood would improve, we would find his correct replacement dose, etc......... But that's a pipe dream, he doesn't care to help himself, he wants to try to punish me. Well, sorry, I'm done.
I do wrestle with "how do you leave someone who is sick?" As my pastor said to me yesterday "Sometimes you just have turn them over to God & concentrate on yourself & the rest of your family.
Just thought I'd let you know.

June 15, 2010

I'm so sorry to hear you've come to this decision - not surprised, but sorry it's come to this.
I know it's a living hell for the partner/family of a Cushings patient and no, we can't be allowed to get away with it. It must be a very strained relationship Bill has with the kids as well as you - these are the things that are going to end up being HIS regret, not yours. Do not be sorry for your decision at all, you tried your best to see this through but it takes two people to make a relationship work, you can't do it on your own...and sometimes just way too much water has gone under the bridge.
I have to say I'm surprised he hasn't turned into a big pussycat after surgery though...I most certainly did and was grateful to those who HAD stuck by me for the later few years at least.

June 15, 2010

....sorry, FB won't show full messages so I have to write them in bits for some odd reason....and my sister just rang so I hope you weren't waiting in anticipation for the rest lol!
Anyway - I was grateful to everyone, and of course I still have arguments with my husband, but I would call these normal, irritated, married-for-years arguments - not the vicious, nasty, all-guns-blazing rows we had when WE lived with Cushings. If those hadn't changed for us I would have been the one to go too...and I was the nasty one...
About my meds - doc emailed yesterday to tell me he wants me back to my normal dose by the end of the week. I'm not sure I want to! I feel way better taking the higher dose, and I've lost another pound - that's 5lbs total in one week - can't be good.

June 15, 2010

I hope you're at peace with your decision about Bill, I certainly think you should be. :)
((((HUGS))))
XXX

November 5, 2010

Hey Judy!

I hope your life has improved since the split? How are things going with that? I have a hard time keeping up with everything right now as well as my memory is a disgrace again.
Love and hugs,

2011-06-29T08:46:00.001-05:00

Lately I’ve been going back and reading old posts that I made on the Cushing’s board and messages I’ve exchanged with other Cushies. It tells so much of our journey, sometimes things that I’d either forgotten or tried not to think about. Some of it is about actual symptoms & some are about my feelings. I’ve decided to post some of them here. It takes a little bit of nerve to throw some of this out there. I will never identify another Cushie if I’m putting up messages I wrote. If there is a link to a thread on the Cushing’s board, it can only be read by a registered member.

This looks like a good place to start.

Sometime late “09

Hi Judy,
How are you? I've been trying to come to grips with the events of the last week, and since you of all people would know, I decided to go back over your old posts on the Cushings boards.
Oh Judy..I wish I could go back to that time and give you a big hug and tell you it would all work out in the end!! The similarities between Justin and XXXX are scary...(I've only read the first few pages, no mention of Jess yet), the trouble of being taken seriously at school and by doctors, the blaming of everything on depression, feeling you're being judged as a crazy mother..he even had a pilonidal too!!
And Judy, you sounded so scared and unsure, I know you've said how this journey has made you that nothing fazes you anymore, and I can hear it in your posts. That makes me so sad.
I just wanted you to know that I'm drawing strength from what I'm reading, I know you all made it through and overcame, and I'm working on doing the same.
(((hugs)))

Oct 31,2009

Hi,
Sucks doesn't it? I'm glad that all those old posts are there, amazing what you can find out. I hope I can help you in some way.
For me, there was a lot of guilt involved because Jess' was being caught so early and she never had to go through as much as Justin. I kept feeling like if I was really a "good" mother I should of figured out he was sick long before things got so out of hand. But...... That is when I adopted Maya Angelous' quote "You did what you knew to do at the time. When you knew better, you did better." I try to remember that.
Of course, earlier I'd felt bad that Justin was so sick and afraid that he'd hate Jess because she wasn't. I was afraid she'd see him as a screw off because he missed so much school but quite often seemed fine when we got home in the evening. I talked to her about it one time before we knew she was also sick. She said "I just don't ever want to be sick that often, I hate being sick."
Someday I'm going to print off all the topics that Jess and I started and put them in a binder in chronological order, probably PMs and emails too. There's also a few threads that others started that I want to include. Mainly the one that XXXX started about suicide http://cushings.invisionzone.com/index.php?showtopic=26036&st=0
I sometimes go back and read some of the old ones, it helps me see that we have come a long way. It's sort of like picking at a scab, it hurts but you do it anyway!
Don't you get to the point that you feel like you think of nothing but stuff related to Cushing's? It seemed like I always had it running through my head to some degree.
XXXXX had once told me that she got to the point where she felt very little, good or bad. I thought that was so sad. Then one day I realized I was there too. Even when Bill lost his job it didn't bother me as much as it would of even a few months ago. I felt like I should be angry for him, and I was, but at the same time, I really didn't care that much.
Sometimes I think it might of been easier if Bill and I had gone through this together. We didn't. I have no idea how he felt because he never talked about it, heck he never talked. Of course, now I know he was also sick and that probably explains a lot but at the same time I still wish I would of had someone to lean on that would have the same emotional investment as me.

I feel bad for you guys. I know it's no fun. It also sounds like you can't get to a specialist quite as easy (which I guess is a pretty relative term) as we could. You know I said back when Justin first got sick that I was willing to go into debt to get him better. Good thing I decided that before it happened!
Just know that you will get to the bottom of this for all concerned.
Whoops, looks like I'm trying to write a book.
I hope that NaNoWriMo will help me in some way, just not sure how. Maybe a new focus for awhile?
Judy

2011-06-28T08:00:00.001-05:00

My kids seem to be doing so well after their BLAs (bilateral adrenalectomy) two years ago. I know I'd read at one time that it can take up to two years or longer to start really getting back to normal. For some reason I thought that only pertained to the physical aspects.

I've watched them improve little by little over the past two years and had thought they'd topped out, so to speak. I was okay with where Jess was. She seems to have energy and her thought processes seem pretty good. Hope that holds true when she starts college in the Fall.

Until a month or so ago Justin seemed pretty good but not really where I hoped he'd be. Then I started to see subtle changes, I can't even quite put my finger on it but he seemed to be changing a little at a time.

Saturday night he came to Jess's graduation reception. He came on time and stayed till the end & helped clean up. He ate, he talked, he laughed, he seemed, well he seemed like the Justin I hadn't seen in many years. Did my heart good!

He has missed so many gatherings in the last seven years (has it really been that long!) or so. If he did attend he didn't really participate, he was just there.

This almost seems to good to be true. This morning I started thinking - what if it was all an act & he really didn't feel that good. Then I realized that he's never before been able to act like he felt that good. So, whichever it was/is, it's an improvement. His eyes looked happy.

So, maybe Cushing's won't win over these two.

2011-06-27T16:34:00.001-05:00

We had Jess' high school graduation party Saturday night. It was a lot of fun. She's a great hostess. We had it at the Purdy's, our youth pastor, because they have a great place to have a wiener/marshmallow roast.

Jess modeling the pearls I gave her.

Erin, who so generously let us use their place for the reception.

Jess & Tandy

With Virginia Trundle

Jess, Ashley & Alisha

Liz & Eden

Justin

Tina, Curt & Justin

Andrea, Jess & Andy

With Brenda Claassen

Justin

Jess, Judy & Justin

She's turned into a wonderful young lady. I'm very proud of her. My niece, Shanda took some photos of Justin. She had taken his sr. pictures back a few years but I never did anything with them. He was in the middle of Cushing's and his face was so bloated it looked like you could just pop it with a pin. For some reason I never saw it in real life but when I looked at the images it was hard to miss. I really didn't need a photo hanging on the wall to remind me.

I'm so thankful the kids are at the point they are. Are they all the way healed from Cushing's? I don't know. I've seen improvements off & on for the last two years. Taking thyroid meds has helped a lot too.

I'm very proud of both of them for all they've overcome.

2011-06-20T08:00:00.003-05:00

I just figured out something about myself.
There's been something going on, actually a pretty minor something, that I wasn't included in. It really hasn't hurt my feelings but I can't help noticing that no one even thought to include me. And it doesn't feel right for me to just jump in. So I ignore it.
I've always known that I can't easily become a part of a group. I have to be there awhile, have a few people draw me in a few times & then I start to feel a little more comfortable. Once I'm really comfortable then things are fine.
Now, I feel safe saying all this because not too many folks read my blog, especially family.
I think when I was growing up I learned to hang back & wait to be included.
I have always said I was the perfect little sister, three older sisters & an older brother. I have one younger brother. In the makeup of the family I seldom take the lead. I might sometimes if it only affects a couple of us. For the most part I let two of my older sisters take that role and I follow along & do what they ask. Sometimes if they don't ask, I do nothing. I imagine it's always been that way. I really don't remember but I had to learn it somewhere.
Two of my older sisters are very close. It seems to me they always have been but I'm not sure. Sometimes what we think we observe and what really is, are two different things. But in my mind they've always been close. I don't remember being included in much that they did. Maybe I did when I was little, I really don't remember. But after a certain age I know I seldom asked because if you had to ask to be included it didn't mean as much as if you were asked.
I think I still feel that way. They turn to each other first with good or bad news or a problem they need to talk out. I don't recall them ever asking my advice unless it had to do with photography. In the course of a conversation they may ask me something but to specifically seek my advice, I don't think that's ever happened. If it was to happen at this point in our lives I'm not sure what I would think.
I'm very different from my sisters. They're very confident women. I'm only confident in a few areas, the rest I'm just wingin' it. They both ran with the popular crowd in high school. I had just a few friends and was pretty much ignored by everyone else. When I first started working in the same town as both of them, I never told anyone I was their sister. I didn't want to embarrass them.
I've never really thought too much about this until now. It's just the way things are. But I've never much liked my one high school teacher who upon learning I was their sister actually said "You're their sister?" Um, thanks, Mr. Harwerth, rub it in. I know - they're cute, I'm not, they're popular, I'm not, I don't need your input.
I must add, I get along very well with all my siblings. The way we pair up doesn't change love.

2011-06-19T13:39:00.004-05:00

Happy Father's Day
I miss my dad, a lot.
I have been taking him to lunch almost every Saturday for the last few years after he could no longer drive. He was already changing some then but the changes weren't as noticeable as they are now. At that time he was losing his strength & his reflexes were getting very slow. Hence the no driving.
My daughter thinks she knows my dad because she usually goes with me to take him to eat. But she doesn't know the man he used to be.
He is very much a Christian and lived the life. If someone needed something, he gave it to them. He's given away a car or two to someone that he knew needed it more than him. I have no idea how many people he gave money to. I'm pretty sure they never asked, he sensed a need and just gave it to them. Dad has never been rich, quite often he probably wasn't even considered middle class. Looking back, we kids have figured out that we were actually poor growing up. We never really knew it for a long time.
Although her really had no *social* standing in our community he was well respected. That says a lot.
Physically, he was a strong man. Now, he is weak. I almost cried the day I figured out I was stronger than him.
My dad is 92 & he seems to be losing his memory. I hear that for many, as they age, they live in the past. Dad's past is disappearing. That's very sad.
He has very little interest in conversation. Part of that could be his hearing. It's as if his emotions have flat-lined. Occassionally I'll see a glimpse of who he used to be but it's fleeting.
Dad had a subtle way of parenting but he got his point accross & we all respected him. I'm guessing that is what kept a few of us (or maybe just me?) from getting in too much trouble. We didn't want to dissappoint him. We also didn't want the punishment. But now that I say that & really think about it, he seldom punished us. When we older & knew we'd done wrong & been caught, we were smart enough not to ask for anything or to go anywhere for a few weeks. Asking to soon might of actually gotten us punishment.
I remember when I was first learning to drive a stick shift. I was in fourth gear and headed up a hill. The car was slowing some & from the passenger's seat Dad says "That's why they made four gears." I shifted down since I couldn't go up and he never said anything. I assumed I'd done the right thing.
If one of us left an outside door hanging open in the winter, as kids seem to do quite often, he'd say "Trying to warm up the outdoors?"
I miss the man my dad used to be.

2011-06-15T22:34:00.004-05:00

Okay, I'm probably ready to get politically incorrect here. Oh well.
It seems that at least once a day, sometimes many times a day,I see a post on Facebook that in its short version says a cancer patient has just one wish, that is to live. Repost.......
I have no doubt that is true. I have known several cancer patients & it is a real struggle and sometimes the outcome isn't good (understatement).
Now here is the *but* & my own little personal rant.
A Cushing's patient has many wishes.
1. Finding a doctor that believes they can actually be sick, not just fat & depressed (which happen to be symptoms).
2. Having friends & family that thought they were truly sick not just lazy.
3. Having enough energy to make it through the day and not being totally exhausted whether they did or didn't accomplish something that day.
4.Being able to find an understanding doctor that isn't halfway across (or clear across) the country. The same can be said of finding surgeons.
5. Wanting their mind to be clear enough that they can keep up with their job & their peers.
6. Wishing their body was physically able to do just some of the simple tasks set before it.
7. Wishing that they didn't feel like they could throw up most of the day.
8. Praying they can get a nights sleep so they can make it through work the next day. And that they didn't have so much muscle & bone pain.
9. Wanting their mood swings to go away so they can keep up with their emotions.
10. Praying (literally) that they live long enough to get a diagnosis.
This list could go on & on. The really sad part is that there were times I wished my family had cancer. Getting a dx would of (usually) been so much easier. Cancer doesn't usually affect every system in the body. If you get a cure from cancer you aren't usually left with permanent damage to random body systems.
Statistics say that Cushing's is rare. I know it's not. As the Cushie community says - it's just rarely diagnosed. Most people think they don't know anyone with Cushing's. Most people would be wrong. They just don't know a diagnosed Cushing's patient.
That overweight woman in front of you in the checkout line? The one that has terrible mood swings? She might have Cushing's. The coworker that suddenly can barely do her job because she is so exhausted and has terrible brain fog? She might also have Cushing's. You know that girl at school that now has arms so hairy it looks like fur? You know, the one that also smells funky sometimes? Yeah, she probably has Cushing's. You laugh at her but you know what? This disease doesn't discriminate. It might be you someday wondering why the weight keeps piling on when you barely have an appetite and work out every day.
As with the list of *wishes* I could go on & on because Cushing's truly is the disease that keeps on giving & giving & giving. Even after a cure (relative term) it still keeps on giving.
As a wonderful neurosurgeon has said "Cushing's kills." It just does it at a very slow, painful pace.

2011-05-31T21:48:00.001-05:00

It’s 2:30 p.m. and we are sitting at the airport in Houston waiting for our flight to Denver. From there it is about a three hour drive home. It seems a little odd to be rejoining the land of the living. I feel like this every time we travel for medical purposes. Most of what we do on those trips revolves around medical issues. It can be hard to remember that the people you call back home (aren’t cell phones great!) have a life that involves jobs, schedules, time limits, etc.

When you’re at the hospital most of the day, time has very little meaning. Although, it seems it should pass much faster than it does.

I found the above in my blog drafts file. It was written as we were headed home after Bill’s pituitary surgery in August of ‘09. I remember sitting in the airport writing it. I also remember watching a bird that was sitting on a table as we ate lunch at the airport.

Lately, I’ve been saying that I need a trip. I got used to traveling every few months when everyone was getting a dx & then surgeries.

June ‘07 ---- first trip to LA. J&J saw Dr. Friedman

Dec ‘07 ----- trip to LA for J&J to have IPSS

May ‘08 ----- trip to Houston for J&J to have pituitary surgery with Dr. McCutcheon

June ‘08 ---- trip to LA for Bill to see Dr. F

Dec ‘08 ----- trip to LA for Bill to have IPSS and AVS

May ‘09 ----- trip to Milwaukee for J&J to have BLA with Dr. Chiang

Aug ‘09 ----- trip to Houston for Bill to have pituitary surgery with Dr. McC

June ‘10 ---- trip to Milwaukee for Bill to have BLA with Dr. C

That is eight trips in three years. Thank goodness J&J were running neck & neck with testing & surgeries and could always do their trips together. There were quite a few day or just overnight trips to Salina or Denver before I got serious & took the kids to Dr. F. No wonder I got used to going places and am starting to feel antsy like I want to go somewhere. It’s been a year with no trips.

Odd as it may sound, I miss those trips. I don’t miss the reason for those trips.

2011-05-30T10:01:00.001-05:00

Thank you to all military men & women, past & present.

Dad’s Navy picture from many years ago. He served during WWII, spending most of his time in the Pacific.

Today is Memorial Day & a good day to honor him & Uncle Arthur for their service. I’m pretty sure that Uncle Arthur wasn’t old enough to serve during WWII.

For many years Dad helped with the ceremonies at the local cemeteries. He’s no longer able to do that.

Dad’s youngest brother, Arthur. He was a career man.

Dad (on left) with a buddy.

Dad

These two photos were with Dad’s few military photos. He never said where they were taken.

The Most Frightening Night of My Life

2011-04-19T08:00:00.001-05:00

This is a paper I wrote last Fall for a class. I don’t think I’ve told this story before.

At about 4:00 one morning our phone rang. It was Curt, one of my son’s friends. Curt also happens to be my boss’ son. He is four years older than my son, Justin and at the time was sort of like a big brother.

Curt told me to get upstairs, Justin needed me. Justin’s girlfriend who was upstairs with him had called Curt on her cell phone because she was scared to come down and wake up me or my husband. Curt then called me to make sure that I knew Justin was in trouble. At this time he was in a suicidal period, that I’m convinced was related to Cushing’s, so I had no idea what to expect.

I raced up the stairs and into Justin’s bedroom. He was lying on his bed and his girlfriend was sitting beside him. His arms were stretched towards me and his hands were curling into claws. It looked like he was trying to move his fingers and couldn’t.

Faith, his girlfriend, said that he was cold and cold to the touch. He had told her that he was going numb. I asked him if he could walk. I saw him open his mouth to answer and his mouth froze. In my mind I can still see the odd O shape of his mouth as he was struggling to answer.

Looking at his frozen hands and face I was reminded of his school counselor who is a quadriplegic. His hands have that frozen, claw-like look. I was scared. I started hollering for my husband as I ran from the bedroom with my heart pounding fast and my legs feeling like they were dead weights.

Bill, my husband ran to Justin and somehow helped him to his feet. I was ready to call for an ambulance but Bill said it was faster to take him ourselves. I still have no idea how they passed behind me and got out to the car without me seeing them. I turned around and saw the car headlights pulling out of the drive.

I told Faith she needed to stay at the house with my twelve year old daughter. I think I was too scared to try driving myself, I really don’t remember why I didn’t go out and get in the van and drive to the hospital. Instead I called my older sister who lives on the other side of town. I knew that the answering machine was down the hall from her bedroom. I remember shouting into the phone that I needed her help and hoping that I was shouting loud enough to wake her up. I was.

While I was waiting for her to arrive I called one of the men from our church to ask him to pray.

My sister picked me up in about five minutes and we arrived at the hospital a few minutes later. A nurse took me back to the ER and let me into the room where Justin, Bill and the doctor were. All three were just sitting there staring into space.

The most important thing to me was that Justin was alive. When Bill left with him for the ER I truly thought he was dying. I was sure if I didn’t get there in time I would not see him alive again.

My heart still races and tears come to my eyes when I relive that night from about five years ago. The only test they ran that came back abnormal showed his potassium was pretty low.

My son had been having a lot of medical problems in the months preceding this incident. I had been researching Cushing’s Disease because he had so many symptoms of the disease. Years later I figured out that he had been in an adrenal crisis. He was diagnosed with Cyclic Cushing’s Disease which means that at times his cortisol, a hormone vital to life and produced by the adrenal glands, would quite often be high causing Cushing’s. But at times the cortisol would be in a low cycle and the adrenals would barely be producing enough to sustain life.

That frightening night spurred me into searching harder to find a doctor that was willing to help us get to the bottom of Justin’s health problems. Since that night Justin has had two surgeries and his sister and dad have also each had two surgeries to rid them of Cushing’s. After our trip to the ER the surgeries barely phased me.

2011-04-17T19:47:00.001-05:00

This is a photo of my dad’s father as a young man. I’ve only seen a couple of photos of my grandpa. Both were after he had a family. I don’t know who gave this photo to Dad. I first saw it on the wall a few months ago among the photo Christmas cards. It looks like one of my sisters wrote on the back, so I don’t know whether it was sent to them or they wrote on it after Dad got the photo.

When I first saw it, I was pretty sure I knew who it was because it reminds me of one of my cousins. I find it interesting that it’s taken with the “studio” in the background. Dad said this was his dad’s favorite horse. I wish I could remember his name. It seems it started with a D. But that’s all I remember.

One Saturday after lunch I asked Dad if I could take it to scan and make a copy. Of course he said yes. I work in a photo lab/frame shop. I took it to work the next day and scanned & copied it. Then I laid it beside the scanner & it stayed there several weeks. He asked me about it once & I said I’d make a note to remember to bring it back. Well, I forgot for a couple more weeks. He then asked me if I’d gotten his dad’s photo framed yet.

At almost 92, Dad’s memory isn’t the best most days. He remembered I had the photo & had had it for awhile. I’m guessing that he thought I’d taken it to frame or I wouldn’t of kept it for so long. So, I knew I should get it in a frame and take it back to him the following Saturday. And I did.

During this time, he quite often said that he wished he’d gotten to know his dad better. Dad was only 17 when his father got sick and died. I think it was just a matter of days, but I could be wrong about that. I think his dad was a pretty quiet man and he had the burden of raising 10 children on very little money.

I told Jess that I’d probably give him the framed photo & he’d ask me what it was for. That’s just how his mind goes quite often. So I was a little surprised that he got choked up and had tears in his eyes when I gave it to him. He looked at it for a long time before he handed it back to me & asked me to find a good place for it to sit. I was glad it was framed.

Here are the other two photos I’ve seen of my grandfather. The one in the covered wagon with my grandmother, I believe was taken during Hoxie’s centennial. The other photo has one of the boys missing. I’m sure my dad is third from the left in the back row.

2011-03-03T08:08:00.000-06:00

I did a guest post for Robin.

2010-10-28T21:47:00.001-05:00

I’ve been married for twenty two years. Soon, I will no longer be married. I’m looking forward to that. I found when Bill moved out that I didn’t miss him at all. I felt like myself for the first time in years. I had no one’s moods to worry about, no one to wonder what they would think of how I was doing something. Don’t think I was some mousey little person who let my husband walk all over me while I believed half the things he said to me. Mostly I learned to ignore him. It just got tiresome listening to him get worked up and go on and on about everything I’d done wrong. Wrong, according to him. And sometimes he was just a bit scary.

Looking back, and I mean really looking back and being honest with myself, my marriage started going wrong almost from the beginning. We seldom had a fight in the true sense of the word because I wouldn’t fight. I wasn’t raised that way. Besides it didn’t take long to learn that it was futile. He had an answer for everything and could twist my words until they almost made sense but they weren’t what I’d said or meant.

Before you think I lived through twenty two years of misery let me say that there were good stretches and so-so periods. But what was always in the back of my mind was the truth that there would come another rant. They seemed to come out of the blue at first but I found that over the years I could predict when they were getting close but still was quite often surprised when it happened.

After Bill moved out of town a few months ago I looked up at work one day and saw him walking towards our door. I suddenly realized I understood the saying “keep your friends close and your enemies closer.” I finally knew why, when we were still together I always worried about getting home when I knew he was home. If I was around him I could gauge his moods and know what to expect. When I saw him that day at work, I hadn’t seen him in over a month and I had no idea what to expect. But I then realized it didn’t really matter, he no longer was part of my life.

This is a bit weird to be throwing this out for everyone to read but I’ve thought about it and my blog’s title is Cushing’s Family. So, in the interest of other families going through this here is just a tiny peek into what our life was like for years. Some might be basic personality, some, I’m sure is from Cushing’s. There just came a point that I couldn’t take it anymore.

More at another time. This is a bit exhausting to write and I still worry that my Cushie friends will be upset with me for breaking things off when Bill was still sick. I know I’ve had a lot of support from them all but I feel guilty. Just not guilty enough to get back together.

2010-10-23T08:11:00.001-05:00

We got the CD of Jess’ senior pictures. Here is a sampling of a few of my favorites. I think they turned out great.

Taking two college classes takes a lot more time than I would of thought. One class has a lot of reading, so much that I sometimes end up doing a lot of skimming. The first week, I started a couple of days late. One class week runs from Tuesday to Monday but for Organizational Leadership the instructor puts up the weeks assignments on Sunday. This week I’ll be ready to start on Sunday. That might make the week a little easier. I’m enjoying the classes.

Last weekend I set up my Dove Chocolate Discoveries™ at a craft fair. I got leads for several parties and need to make contact with them. I also got a possible recruit. She was pretty excited about it then but I haven’t gotten a response to the email I sent. So, we’ll see. She may have lost interest or she may just be taking her time. There are a couple more craft fairs that I will be attending. I also had two chocolate tasting parties this past week. One on Sunday & one on Thursday. They both were pretty good. Actually, most parties are good.

I have a whole list of things I want to get done this weekend. This blog entry is one of them. I’m trying to stay more current than before. It’s supposed to warm up by afternoon. I hope so, there is a lot of laundry to hang out. It’s stayed fairly warm for Oct. I have noticed this Fall that I’m not seeing any caterpillars on the highway, I’m wondering why that is. I think I’ve heard it said that a lot of caterpillars can mean a hard winter.

I’m hoping the weather is good tomorrow so I can take Ashley’s & Alisha’s senior photos.

2010-10-19T23:20:00.001-05:00

It’s been a very long time since I posted anything. It’s time to get back in the swing.

The short version of the last few months. Bill had his BLA in June. We separated in July. I’m filing for divorce. I got back in the swing of doing chocolate tasting parties. I have enrolled in two college classes. Jess & I are working on revamping the house. It’s a long process when you don’t work at it every day. But this week I’m starting on the second half of the living room floor.

With assignments in two classes I’m learning to budget my time.

I’m happy.

2010-07-14T23:31:00.001-05:00

Justin & Jess are a little over 14 months post BLA & seem to be dong pretty well. They added thyroid meds about three weeks ago. That seemed to make a big difference.

Today I noticed something about myself. Cushing’s, its aftermath & worrying about my kids’ health (physical & mental) is no longer uppermost in my mind all day every day. I don’t really know when this happened but it was a real revelation to me when I realized it. Those thoughts had been my constant companions for years now & it seems a little weird when I figured out how little I thought about it these days.

Don’t get me wrong, I still think my kids’ health more than the average person does. But sometimes now it is just to marvel that they are alive and doing pretty good. The last four or five years seem like a bad dream. While I know I will never forget how bad things really were it’s no longer the only thing I can concentrate on. YES!!YES!!YES!!

I’m not sure I ever thought this day would get here.

I have a weird after affect of all the medical drama. I really don’t like using the telephone much any more. Weird, huh? I put off phone calls as long as possible. Probably from all the appointments & phone consults I had over the years.

I have also found that I feel guilty for being in this good place. When I read on Facebook or the Cushing’s support board about other mothers who are struggling to get their kids diagnosed I hurt so bad for them. Then I feel guilty that my kids seem to be in a pretty good place. Survivor’s guilt?

2010-06-24T21:41:00.002-05:00

Jess is gone to church camp this week. Life seems strange with her gone & no way to communicate with her. No phones at camp, which makes sense to me. I need to tell her friends to send me random texts now & then during the day like Jess does.
At this time last year she was constantly throwing up after having her adrenal glands removed. I'm sure I thought I'd never be comfortable letting her be on her own, so to speak, and in charge of her own meds. There is a nurse that dispenses all medication but it's up to Jess to know if she needs to take any extra hydro. She usually does anyway but I'm around & there are those times that I think she needs more. Moods tell a lot. ☺
She will get home on Saturday & then leave with Ardath (my boss) to go with her to bring her grandchildren back for a week. I think they'll be back sometime late Monday.
My neighbor called me today & wants to have a DCD chocolate tasting party. First time I've ever had someone approach me. I'd invited her to my launch party & she wasn't able to make it. She's called me a time or two to ask questions. So I guess it shouldn't surprise me too much.
I also have a possible new recruit. Pretty sure she'll sign up but will wait & see. If she does she'll be my second recruit. Yea me. I don't do a hard sell, both have approached me.

2010-06-23T21:56:00.003-05:00

My family is now Cushing's free. Seems weird to be at the end. Pretty anti climactic. Bill had surgery with the same surgeon that J&J used last year. When he came out of the OR to talk to me, he said "you are now the only one in yor family with adrenal glands." I hadn't really thought of it in that way before.
It seems we fought so hard to get to the end of the Cushing's journey, I now feel a bit lost. I think I'm ready to become just myself again. I'm pretty sure I'll be doing that all by myself. I'm not sure if it's been Cushing's or something else that has been so present in our marriage for about the last 20 years. But whatever.... If he says it's over, well, that's fine by me. This time if he doesn't mean it (like all those other times) I do. Not sure of a timeline but I can only take so much.
People ask me how he's doing after surgery. I give the standard "oh, pretty good, I think. It'll take awhile to know." The truth is I have no idea.
But on a brighter note - I started doing something just for me. About the end of March I discovered Dove Chocolate Discoveries. It took just a couple of days to decide I was going to become a chocolatier. I love it. I give chocolate tasting parties at people's homes. It's really a lot of fun. So much different than any other type of party I'd been to. I've done fairly well with it. I haven't done much this month. I was gone the first two weeks of the month for Bill's surgery & only had one other party scheduled for June. I had been hesitant to book many parties until I knew how recovery was going to go.
I've met several goals in my first months & have earned extra commisions & several great gifts. I'm ready to get the ball rolling again. I did a tasting party this past Saturday & found I had missed doing them.

2010-03-14T17:10:00.003-05:00

We're one week into Walk Kansas and I met my weekly goal. I think I would of done more but it was cold and WINDY. I'll try harder this week. I enjoy it once I get started. Seven more weeks to go. I hope by then I make it a habit and continue to walk most days. Small improvements.
The last few years I seem to have let go of everything that I ever once liked. I need to change that. In small increments I think. When it seems like you put your life on hold it's hard to just jump back in. Somehow I'd thought when everyone was healthy again (and not all are yet) life would just take up where it left off. But I find it's not that easy.
It seems that once Cushing's came into our lives everything else for me slowly dropped away. I don't even know how to describe it & I'm not sure I noticed it happening until it was all gone. There were days I thought that I couldn't wait for life to be "normal" again. I now find that "normal" no longer exists and I don't know what to do about it.
In some ways I feel a lot like I did for the first year after Mom died. And only just this minute did that occur to me. Maybe I'm grieving. There is a lot to grieve. No ones' life is what it used to be. And it never will be. We will go on from here and life will be good again it just won't be what we had envisioned.
Now that I'm out and walking I need to also start taking control of the house. Mainly the sewing room at the moment. In the last couple of months it seems to have acquired a lot of things from other rooms. Things that really didn't belong there but now I must find a place for them or I have no room to sew - literally.
I will start in small steps, take care of ten things each day. Just ten things, no matter how small, it will still be more than I am doing now. This has made me remember that one year I decided to save all my change from every purchase I made. I always paid with all bills so that I would get change back. I also got change when I wrote checks. For years I'd always rounded my check up to the next dollar and got back change. Then I had change for the kids and it was easier to subtract. I started putting that in a savings account so I wouldn't be tempted to use it. At the end of the year I had $600!!! That's a lot of money when you think it all came from change and was never missed.
Cleaning the sewing room will be the same way. Ten things at a time and one day it will be done.

2010-03-08T21:38:00.003-06:00

I have an appointment for J&J with a doctor from Overland Park who comes to Hays once a week. I've kind of put off looking for a local endo. For us local means three hours to Denver. Hays is only an hour and a half.
Dr. Watson is a DO (Doctor of Osteopathic Medicine) and I've heard that he is very good with hormones. I figured it's worth a shot to see if he can keep an eye on things for the kids.
When I called for an appointment I explained their situation (Cushing's, BLA, etc) just to get an idea if he would even want to take them on. When I got a call back the next day the gal told me that he thought it sounded interesting and he was up for a challenge. We got reqs in the mail for blood work before the appointment which isn't until April. The good thing is that it's the same day I go to Hays to see my GI.
My Guess is that if he is good with hormones he'll probably be fine for us.
Tonight we started our walking for Walk Kansas. Jess & I and all the female Klipperts make up our team - The K's. Jess named us. The idea is for the team to put in enough miles in 8 weeks to make it across Kansas.
I haven't walked in a long time. I don't know why, I've always enjoyed it. We're doing our walking at the track. I've never walked there before. I really like it. No sidewalk cracks, no cars, no curbs, just walking. The track is close to Klippert's house, so it will be easy for them to come join Jess & I. Ashley walked with us tonight.

2010-03-07T18:34:00.003-06:00

A high saliva will send Bill to surgery. There are some ready to send off. While waiting on those results I hope he continues to do more. Just in case.
Saturday, Bill's sister, Linda, came over & they & Justin did their blood draw to send to the researcher in England. Jess had already done hers. They are listed as "Family 81" on the paperwork that Dr. F emailed me. All except Linda have case numbers assigned. I'm wondering if we will ever hear anything about the study.
I'm guessing there must already be 80 other families in the study. Put that with all the family Cushing's connections there are on the board & I'm thinking the only reason for the study is to find out what the genetic link is, not if there is a genetic link.
Today starts "Walk Kansas". We'll see if our team of six can walk enough miles in eight weeks to make it across Kansas. It'll be good for me.

2010-01-11T20:18:00.001-06:00

Jess & I went to Phillipsburg yesterday for Myrna’s birthday. Sam & Shannon, Sue & Dad also went over. We got there in time to go to church with her & John. Kimmy & her family were there too. We went to Pizza Hut after church and ate from the buffet. Dad doesn’t really like pizza but there were enough things on the buffet that he liked. Although, maybe he likes pizza now, his tastes have changed with his age.

When we left P-burg we went to Hays and did a little shopping. I found a couple of sweaters for a good price. It’s time to update my wardrobe some. And my hair. I’ve let myself go for way too long. I think I may be about ready to start paying attention again. So, now it’s time for me to get my hair cut. I’m so sick of it. It’s too long and it’s so straight and won’t take a curl. I’m just sick of it. But I have to find a style that will keep my ears covered, very important in the middle of winter. Yesterday in Hays I was half tempted to walk into the the salon in the Mall and get it cut. But both gals were busy so I let it go.

Last night I sorted through a couple of small boxes of things I’ve saved over the years. I had forgotten that there were some letters from Mom. Not many but they were interesting. Just general chit chat about what was going on at home. They were fun to read. There were also letters from Dad. Several of them were the stories that I have typed, printed and put in notebooks for the family. I’ve also been slowly (very) putting them in a blog. The letters (that were not the stories) were so good to read. They reminded me of who Dad was. Most of the time he seems like a different person now. His mind is not as clear as it used to be and he’s just tired. I love him a lot but I do miss the man he used to be.

In the box I also found a poem I’d cut out of a paper years ago. I can tell I used to have it on a bulletin board. I still like the poem.

Because….

I cried

because things are so unfair,

because of the misunderstandings among people,

because sadness overcame my joy.

I cried

because I lost someone I loved,

because I couldn’t stand the hurt anymore,

because I wasn’t the person I wanted to be.

I cried

because some people have nothing,

because some people couldn’t reach out,

because the goodness of some very

special people touched my heart and soul.

--Linda Patterson

2010-01-09T21:14:00.001-06:00

Tomorrow my oldest sister (and the oldest sibling), Myrna, turns 60. Hard to believe. I think my definition of old changes yearly because obviously my generation isn’t old. My youngest sibling, my brother, Bob, turns 47 in a little over a week.

Speaking of Bob, Florida, where he moved his family this summer, is cold this week. He called today, said he kind of feels like he’s back here but without the wind. Their house has no heater so his wife bought some space heaters. Bet there was a big run on those! Besides being cold they had freezing drizzle today. He did call me on Christmas Eve. I missed the call. His message said something to the affect of not answering the phone because I didn’t want to hear in person that it was 85°. Not very nice of him when we had freezing temps!

Something different is going on with Bill. I can’t figure out if his cortisol is high or low. He says he hasn’t hurt for several days. He said he hasn’t even taken any pain pills, which is a real biggie for him. But he has been sleeping more, a lot more. I wonder if he’s able to sleep so well because there is no pain to wake him up. I’m sure he’s enjoying being pain free but he said he feels like he’s wasting so much time because he sleeps so much.

Jess was gone for a few days for a basketball tournament in Hays. She said the coach never left her in the game long. I think she (coach) was nervous about something happening to her. I suppose with time the coach will get used to it and figure out that the odds of her collapsing on the court aren’t all that great.

2010-01-02T18:16:00.001-06:00

We’re at the start of a new year and I can’t help but wonder what changes it will bring.

The past year certainly had big changes for our family. Two kids now Cushing’s free thanks to a BLA in May. Bill was diagnosed with Cushing’s and had pituitary surgery, a first step for him of freeing himself of this horrid disease. He’s also unemployed which brings a whole new set of challenges besides monetary.

Both Justin & Jess seem to be doing fairly well eight months after surgery. Jess, I think has done better than Justin once she got over her initial six weeks of vomiting. Both started on adderall awhile back. It seems to agree with Jess pretty well. Although she says that some days it doesn’t seem to work. We’ll have to pay attention to that. The first day or two that Justin took adderall he said it helped him think better. But later he said it didn’t seem to have much affect so he had started taking a second dose halfway through his work day. Still nothing. We talked with the doctor and he started him on vyvanse and so far it seems to be working for him. I hope it continues to do so.

We have yet to find a “local” endo. I say “local” because for us that means three hours away. My intention was to let things go until Bill had his pit surgery in August. They would then of been about three months post op and things might have been leveling out then we could test and see where all their hormone levels are. But things kind of fell apart after Bill’s surgery. So, I need to get on that. At the moment I’m thinking of shooting for April. I hate the thought of trying to get to Denver in the middle of winter. Especially this year with the weather being so unpredictable.

I have found nothing to motivate me to do anything. I mean that literally. For awhile I felt a little lost after the kids had their BLAs. No more testing, etc. I’ve always been somewhat of a procrastinator but now I’m not even sure if that’s what it’s called when I have no desire to do anything. I still need to get out Christmas cards and have a lot of thank you cards to write. I MUST get that done.

I wasn’t really expecting a cure for Bill with his pit surgery but was hoping for improvements. There were a few for awhile. Now he’s pretty much in Cushing’s grip again and it ain’t pretty. The cycling high and low affects us all. Now, I think I wait on pins and needles hoping that with the testing he’s doing he’ll be sent to surgery. Oh fun, another two weeks in a hotel room.

I seem to have lost contact with most of my friends. I just don’t feel like talking to anyone. My life seems to weird to try and explain. I really need to get back to quilting. When I’m working on blocks it makes me happy.

With time on his hands Bill has decided to clean the house from top to bottom – everything. It is something that really has needed done. For various reasons I pretty much gave up on housework a couple of years ago. But then again there are three of us that live here now and I have been about the only one to clean house for the last twenty years.

This housecleaning has made me start to sort through accumulated papers and weed out a lot of junk. Of course I come across some things that just have to be saved. I came across Jess’ infant discharge papers from the hospital. I now know that her blood type is B+.

I have shredded 12 years worth of cancelled checks. It was a little like going through an old diary. But it did help me to remember that we did used to have good times in our family. I need to hold on to that.

I’ve come across old clothes of the kids’ that I put away to save. Not a lot that I really want to save but some I just can’t get rid of. There is a whole stack of clothes that I know I was putting in a closet with the intention of giving away to the Swap Shop. Must of forgotten about them. Need to wash them up and do that.

I’m going to try and get back in the habit of blogging regularly but am thinking that there will be a lot less about Cushing’s this year. I won’t change the title though. Cushing’s has shaped and molded us and has made us what we are. Whether that be good or bad, it has changed us all and brought us to this point in our life. And looking back it had been subtly shaping us for years.

2009-10-07T23:02:00.001-05:00

I’ve found something that will keep me occupied in November. I think it’ll be a bit out of my realm but it should be fun. And distracting. I’m going to participate in NaNoWriMo. I’m running ideas around in my head but haven’t settled on anything yet.

At least then I’ll have a reason for getting nothing done around the house.

2009-10-05T23:19:00.001-05:00

I’ve been trying to tell myself over and over and over that everything happens for a reason. Unfortunately, we don’t see the reason right away.

It seems there is nothing easy about collecting unemployment. It’s been a little over two weeks since Bill lost his job. Last week he got a letter telling him that he would have a phone interview with someone from the unemployment office on Oct. 30 to determine if he is eligible for unemployment. That would be six weeks since he quit working. And of course no benefits until it has been determined that he is eligible for unemployment. So I’m guessing that by the time he gets any benefits it will be at least two months since the day he was let go. He got his final paycheck about a week and a half ago. So, I’m guessing it will be at least five weeks before there is any income besides mine. I’m pretty sure though that if we want to try and keep our insurance we’ll have to come up with a COBRA payment before we get any unemployment.

They really know how to get you when you’re already down. I wonder if maybe it wouldn’t seem quite so bad if things wouldn’t of just been starting to look up for us. While we know that Bill doesn’t have a cure from Cushing’s, he had been feeling better than he had in years. We had five surgeries down and probably just one to go. After all the years of medical uncertainty it seemed that we were close to the finish line. But maybe if things weren’t getting better it would of just been one more bad thing to add to the list.

If he’d lost his job as a result of Cushing’s I would feel differently. I don’t know exactly how I would feel but I don’t think I’d be so full of anger. If he’d been messing up at work, I could be mad at him. As it is I can only be mad at someone I’ve never met who was petty enough to fire Bill so that he could give his friend a job. I wonder what’s the “official” reason for terminating him.

I’m surprised sometimes at exactly how strong my anger is. And there is no one to take it out on.

2009-09-24T22:09:00.001-05:00

Artist: Rob Thomas
Album: Cradlesong (2009)
Song: Her Diamonds

Oh what the hell she says
I just can't win for losing
And she lays back down
Man there's so many times
I don't know what I'm doin'
Like I don't know now

And by the light of the moon she rubs her eyes
Says it's funny how the night can make you blind
I can just imagine
And I don't know what I'm supposed to do
But if she feels bad then I do too
So I let her be

And she says ooh
I can't take no more
Her tears like diamonds on the floor
And her diamonds bring me down
'Cause I can't help her now
She's down in it
She tried her best and now she can't win it's hard
To see them on the ground
Her diamonds falling down
Way down

Well she sits down and stares into the distance
And it takes all night
And I know I could break her concentration
Oh, but it don't feel right

Till by the light of the moon she rubs her eyes
Sits down on the bed and starts to cry
And there's something less about her
And I don't know what I'm supposed to do
So I sit down and I cry too
But don't let her see

She shuts out the night
And tries to close her eyes
If she can find daylight
Then she'll be all right
She'll be all right
Just not tonight

And she says ooh
I can't take no more
Her tears like diamonds on the floor
But her diamonds bring me down
'Cause I can't help her now
She's down in it
She tried her best and now she can't win it's hard
To see them on the ground
Her diamonds falling

I can't take no more
Diamonds on the floor (no more, no more, no more)
Diamonds falling down
I can't take no more
Diamonds on the floor (no more, no more, no more)
Diamonds falling down
Oh
Oh
Oh
Oh

When I first heard this song it really reminded me of our family situation with 3/4 of us having Cushing’s. And I seldom know what to do to help them. When he talks about her and the night it made me think of myself & Crohn’s. Except I preferred being sick during the night and hated for daylight to come. If I was sick during the day it meant I was missing my life. Being sick all night just meant I’d feel worse than usual the next day.

A couple of months ago I posted a phrase from this song on my blog. While I always thought of our family when I heard this song I didn’t really think that was what it was about. I was wrong. He wrote it about his wife who has Lupus.

http://www.associatedcontent.com/article/1907710/rob_thomas_her_diamonds_new_anthem.html

2009-09-23T20:48:00.001-05:00

Bill talked with Bernie (he runs the whole outfit here in Colby) and he said that Murfin wouldn’t stand in his way of collecting unemployment. He also gave him the numbers for about three of their rigs that operate somewhat close to Colby. So he’ll be calling them to see if they have any openings. Sometimes when you’re let go from the company they won’t hire you back in any capacity. That isn’t Bill’s case, thankfully. Best case scenario would be one of the rigs needing help on one of the towers. It would be nice if he could stay with Murfin, he’s been with them close to thirteen (?) years. I know how he was let go was wrong, but it was only Brian’s doing. And it does always seem that the oilfield is a law unto themselves. Although I’ve never quite figured that out.

I keep telling myself that everything happens for a reason. I guess we’ll know the reason later.

2009-09-22T22:51:00.001-05:00

Cold, rainy & dreary all day. Seems appropriate. Some times bad news is worse when the weather is nice and everyone else seems to be out having a good time.

2009-09-21T23:38:00.001-05:00

I need to get back in the blogging mode. It’s been over two weeks since my last post.

Bill went back to work three weeks post op. He’s done pretty good once he figured out when to take his meds. He pretty much reversed the a.m. & p.m. doses since he works the night shift. He got a prescription for adderall from his pcp. It seems to help him. He has an easier time talking. I no longer feel like I want to pull the words out of his mouth.

While work has been hard on him he says he does actually feel better than he has in several years.

So life was getting back on track and all we had to do was figure out what Dr. F would need to clear him for a BLA.

The last couple of weeks, Bill has been staying away from home because the rig is over two hours from home. Saturday I’d just driven back into town after taking Dad to lunch when I got a call from Bill. I thought it was unusual because he usually doesn’t call in the middle of the day, on good days he’s asleep at that time. Other days he’s trying to sleep. The first thing he said was “I just got fired.”

I suppose that many people that get fired say it’s unjustified but this truly is. It’s so wrong on so many levels.

Here’s the background.

A few weeks before Bill left for surgery, most of the crew on his tower (shift) quit. A new driller (shift boss) and hands were hired. So he had only worked with this crew for a while but they did know of our medical issues. While he was gone “A” (because I don’t know the guys name) was brought on board to fill in. When Bill got back to work A was still there because “B” had ended up in jail so A was filling in for him.

It turns our that A used to work with Brian, the driller. And I guess Brian intended to keep it that way. When he called Bill he told him “Well, I have to let one of you go.” Huh? Didn’t Bill have a job and A was just a temp? Guess it doesn’t work that way. He just called him up in the middle of the day and said he wouldn’t need to come back.

Bill then calls Andy, the pusher (supervisor for all three shifts on the rig) to see if he knows exactly what’s going on. Andy said he’d gotten wind of this happening and was trying to reach Brian. He said he’d get back to Bill. I guess that Andy had been trying to reach Brian and tell him that this wasn’t going to happen but Brian never took his calls until after he’d called Bill and fired him. And since they all use cell phones I know Brian has caller ID.

He’s talked to a couple of guys that worked on the other towers and everyone is kind of upset with Brian. Yesterday Bill called Andy just so he’d know what the “official” reason was for being let go. Andy said that the original paperwork that Brian filled out said that Bill had resigned. Oh, that would be great to have that turned in, I don’t suppose there would be any hope of unemployment. Andy then said that they had settled on “your health.” Even that doesn’t set too well. I think that could also make it tough to collect unemployment from the company. Besides, he was working and keeping up, so how does his health figure into this. But I guess when they can’t tell the truth, which is that Brian wanted to work with his friend, they grasp.

I think we’re handling it pretty good but it has only been a couple of days. If I think about it too long, I get furious and would love to wring Brian’s neck. Talk about kicking someone when they’re down. I don’t know where things go from here but I’m sure we’ll get through this. It just seems like one thing after another.

2009-09-07T19:19:00.001-05:00

My niece, Shanda married Caleb this weekend. Fun day. So many photos, it’s hard to decide what to show.

First dance

Shanda, Sue & Tanya

Jess and her little cousins do the dollar dance with Caleb.

Caleb & my dad

2009-09-01T23:32:00.001-05:00

I had a strange & scary dream right before waking this morning.

I was driving out by my dad’s place & I think I was actually trying to get to his place. But you know, dreams are strange in that sometimes you aren’t quite sure what’s going on. I’m driving south on what we call the “west road” because it’s the road west of Dad’s house. Simple. Anyway, I’m getting closer to the turn for the farm but am having a hard time seeing it because my windshield is covered with something. I can only see out of a small section clear up in the left corner of the windshield. Somehow I could make myself sit high enough and crane my neck to the side and see through that one tiny spot. I’d been driving for several miles like this.

Even though I could barely see the road it seems like I was going a normal speed for a dirt road. I’m pretty sure Bill was in the passenger’s seat. Somehow I missed the turn to Dad’s and had to go another quarter of a mile before I could turn around. As soon as I turned around and made it back to Dad’s road and turned towards his house I woke up.

It doesn’t seem that scary as I write this but since dreams have a way of making things seems very real, it was a scary dream. When I woke up I laid with my eyes closed for awhile thinking about it.

If I was into interpreting dreams I would say that I was in the driver’s seat & didn’t have a clue what I was doing because I couldn’t see where I was going. And it was darn scary. Sort of sounds like the last few years. And it’s ongoing. I really hate how dreams can seem so real.

Bill called me this morning and told me that he did take some hydro, just 10 mg. Said he was starting to feel kind of weird.

Tonight we went out to eat. It took a long time and towards the end Bill was getting sort of antsy and snappy. We got home and he was perfectly fine. Wonder about that.

2009-08-31T23:33:00.001-05:00

Bill is now about 2 1/2 weeks post op. It was sort of been up and down for awhile after getting home. Things seem to have evened out now. He did an 8 a.m. blood draw at a week & a half post op. He’d withheld hydro for 48 hours and his cortisol was still at 22.1. Normal is 4-22. It probably shouldn’t be that high this soon after surgery.

He has had relief of some symptoms but I wonder how long that will last.

The other night he asked Jess to fill his pill box for him as it can really take some concentration. There are several different meds, some to be taken more than once a day and at certain times. When she came to the hydro she asked if she should put it in with his bp meds. I said I’d ask him to be sure I knew how much he was taking. I forgot to ask. So he hasn’t had any hydro since Saturday around noon. I don’t think he really could tell a difference. When we figured it out tonight, we talked about it and he decided that for now he’s not going to take any. If he feels like he needs it, there’s plenty here.

I’ve always kind of hoped that he wouldn’t have his numbers drop too low for too long. We know he has a tumor on his left (I believe) adrenal and the other secretes extra aldosterone. A few months ago when I asked Dr. F how soon Bill could have a BLA after his pituitary surgery, he said that he’d be having a unilateral. But what made me nervous was that he couldn’t tell me which adrenal would be the one to come out. If there is no cure from the pit surgery then a BLA for him would be the next obvious step.

I’m really afraid if he just has a unilateral adrenalectomy, that he would end up back in surgery a few months later to have the other adrenal gland removed. That would be a real waste of time I think. Not to mention it would be an additional surgery and additional time off work, etc.

2009-08-19T23:32:00.001-05:00

Poem by Steve Owens or here

The photo was taken for an article in the Hays paper about a year and a half ago. Read article here.

Steve added the poem later, it wasn’t part of the article.

2009-08-19T15:13:00.001-05:00

The gal from internal meds was just in the room. She thinks that probably one of the meds they are/were giving him is what has caused his terrible headaches. She said it is a side affect. I’m guessing I’d rather have high bp than take a med that would give me a headache like that.

She was talking about his blood pressure readings for the last few days. She mentioned what it was last night. I then said (in a regular tone of voice) “did you know that the reason he wasn’t discharged this morning was because it was too low and Dr. McC wasn’t comfortable with that.” I only said it because I didn’t know how fast info from one doctor was available to another doctor. My gosh…….did she let me have it –“nobody called me, etc. etc.” I quit listening and went back to reading on my laptop. I have no idea what set her off but I sure am glad she’s not a nurse, then we’d have to deal with her on a regular basis. Wow! I usually don’t get that kind of response from people.

Been an interesting day so far. Bill is getting very antsy. I don’t blame him.

2009-08-19T12:00:00.001-05:00

So, there has been a change of plans this morning. Things were getting started to discharge Bill. But then they looked at the bp and it was in normal range. I guess that’s what the internal meds department was shooting for but Dr. McC never intended them to get it that low. He’d told me somewhere around 150 or so would be good since has has been so high for so long. Dr. McC isn’t comfortable discharging him with his bp that low. I understand that. I also find it amusing as all he has heard for a long time is that it is too high.

Anyway, he won’t be getting out of the hospital today. Poor guy. He is taking it better than I would of expected. I hope they know that we will make our flight tomorrow afternoon.

It’s just sort of frustrating. I’m by no means a doctor but even I know that dropping a person’s bp from 230/130 to 117/?? in less than a week, is a little tough on the body.

And of course one more day in the hospital probably means one more visit by the endos. Of course this time they can’t say a thing about his bp, which seems to be all they are concerned about and that isn’t even their department.

2009-08-18T22:15:00.001-05:00

Yesterday Bill got moved to the neuro floor. Almost seemed like a hotel after being in ICU. For the most part he has been feeling fine so is going a little stir crazy being in the hospital.

Last night I met a gal from the Cushing’s support board. Her 16 yo son is having surgery tomorrow. It’s always nice to meet people from the boards. In fact I have met four this trip. I’m not sure if I’ve mentioned that I met Steph & her husband before she was discharged. A very nice gal. She’s home now. I came close to meeting another girl and her mother but it never worked out. I went by her room once and they weren’t there. Then I had a message from her mother but I was sick. They were leaving the next day. I should call and let them know I wasn’t just ignoring them.

Bill called this morning (now that he’s out of ICU he can have his cell phone) as I was getting ready to go to the hospital. He sounded awful & very upset & I was really afraid that he had had a stroke or a heart attack. They had been getting ready to start the discharge paper work and he had a terrible headache. So bad that he was not thinking clearly. The lights were hurting his eyes even after putting on his sunglasses.

He had me call him when I got to the hospital and he came out to meet me. The headache had really scared him and he was upset that it kept him from being released today. When we got back on the floor I talked with his nurse. She told me the doctors had decided that they were dropping his bp too fast. Gee, what have I been saying since last Friday.

He is being released tomorrow. He’s really looking forward to that. Me too. I must say that I have noticed a change in him. While he is getting cabin fever, it doesn’t seem any worse than someone else would get in the same situation. If this would of happened before his surgery, I really don’t know what he would of been like. I do know he would of been very angry. So some positives already.

2009-08-16T20:59:00.001-05:00

Things seem to be going pretty good with Bill. He’s on no pain meds at all but says that the terrible all over pain that he has been experiencing for some time is gone. That’s a relief. A few months ago he did start taking pain pills but had to go off them a couple of weeks before surgery. He usually has a very high tolerance for pain so I know it’s been bad lately if he was taking pain killers. I’m just happy that it’s gone. Hope it stays that way.

He’s on solid food. He’s had all IVs removed and also the catheter. He did say today that he was almost cool. That’s pretty unusual for him. Oh, he also got out his nose packing. His bp is still up & down. I think they will move him onto the floor tomorrow. I had originally thought that he might be discharged tomorrow but now I don’t think so.

I’m not sure if they have done an a.m. cortisol on him yet. If not, maybe they are waiting until he is on the floor. I don’t get much info from the nurses.

I was only with him for a few hours this afternoon. When I got there he was asleep but I could tell that he had been up and sitting in the chair.

I slept a lot today and am feeling some better. Although, I know how this typically goes and it seems to me that I should get a whole lot worse before I get better. I hope this time isn’t typical. My abdomen is still very hard and hurts sometimes, so I don’t think this attack is over yet.

2009-08-15T23:12:00.001-05:00

Bill was doing fairly well today. I don’t think he took any pain meds. They did give him potassium again today. His has been staying at about 3.8 which is on the low end. Today they were pumping it into him faster than usual, I don’t know why, and he started having a lot of pain right where the IV was inserted. He said it felt like the needle was burning hot. I could tell it REALLY hurt as he was hollering. They unhooked that IV and adjusted the dose and said that it could cause that pain when administered that fast. So you wonder why they do it that fast, it wasn’t like he was critical, technically he wasn’t even low.

Today he had 50 mg of hydro. Yesterday it was 100 mg.

His headache seems to be gone. He slept off & on most of the day.

I was thinking about the conversation Dr. McC & I had yesterday after Bill’s surgery. I think I’m going to send him an email and tell him that Bill seems almost calm about being stuck in the hospital. I hope this lasts.

I came back to the hotel about 6 p.m. That is the time they shoo all the family out of ICU for two hours. They say it’s to change shifts but I’m not sure why they need us out of the way. By the time I got back to our room I was feeling really sick so I never went back at 8:00. I’ve felt something coming on for several days & it finally hit tonight. I’ve slept for awhile and feel better but have to take it easy with food for awhile.

2009-08-14T22:53:00.001-05:00

Today has been a very long day. Bill reported for surgery at 5:15 this morning. I was glad he was having the first surgery of the day, no waiting. Everyone that came in to talk with him commented on his blood pressure. He was taken to the holding area about 7:00.

When I checked into the surgical waiting room, I was told that they would update me at about 10:00 & 12:00. At 10:00 they woke me from a deep sleep to give me an update. I’ve always been a believer in no news is good news, so I was a little irritated that all they told me was that surgery started at 8:09 and they were able to go in through the nose. I know they are being helpful but all I could think was “you woke me for this?” Actually, my thoughts on surgery are that if everything is going okay, no need to tell me, if things aren’t going okay, no need to tell me until it’s all resolved one way or the other. There is nothing I can do but wait, I can’t change the outcome of surgery.

It was a little before noon when Dr. McCutcheon came to talk to me. Every time I talk to him, I can’t help thinking what a nice guy he is, and of course a great surgeon also. First he told me that he usually goes in through the right nostril (because they stand on the right side) but that Bill had a lot of scar tissue there (must of had a broken nose at some time) so he went in through the left nostril. He removed a white nodule from the left side of the pituitary right where he had seen something on Bill’s MRI. He said there was also a wedge shaped “something” that curled around the bottom of the gland, I think he meant on the outside, although I’m not sure he specified that part. He said he peeled off the layers of it and it was also sent to pathology. He found nothing on the right side.

The thing with Dr. McC is that he never seems rushed. After talking about the surgery, we talked about J&J and also about his son. Oh, I guess the very first thing he told me was that there was no CSF leak. He said he’d been worried about that with Bill. He said that while a leak is never good, he was afraid that three days on his back would drive Bill crazy. Actually, he said something about every time he’d seen Bill (he talked with us three times last year, pre op and then two post ops, and then talked with us yesterday) he seemed “well, somewhat worked up.” Or did he say agitated? Anyway, he had Bill pegged right. I had also worried about if he had a leak and had to be flat on his back for three days. I thought Dr. McC was pretty observant! We then talked about whether his almost constant agitation was possibly a part of Cushing’s and are hoping that it is.

Bill was put in ICU because of his high blood pressure. I really don’t like the ICU that well. Although I did like the nurse that came on duty right before I left to come back to the hotel. She seemed on the ball and interested in getting his pain level down. I can’t remember what they had been giving him, but it was only somewhat working on his head pain. She also turned on the little machine (have no idea what it’s called) that automatically inflates the leg wraps to help prevent blood clots. I had noticed during the afternoon that I never heard it working so I would ask the nurse how often it should be pumping and she would press a button down there and the other nurse put a new little machine on the tubes. But you know what, they never turned it on!!!! Tonight I asked the new nurse if it was supposed to be working and she looked down and turned it on! All afternoon it had never been turned on.

I think the headache has several contributors. First, he had pit surgery. Second, his cortisol levels have possibly dropped a lot, although they gave him 100 mg of cortef in an IV. Third, I’m not real crazy about how fast they were dropping his blood pressure. I could be wrong, but I think when your body is used to 230/130 for well over a year or more, dropping it down to a normal range in just a few hours, is too fast. I would think that they would drop it for a few days and then drop it a little more. I don’t know, but the afternoon nurses just laughed at me for questioning that. They said his bp was perfect. But I’m not sure his body knows what to do with perfect.

I didn’t see the guy, but Bill said some doctor was in and thought he should maybe see someone in internal meds because of his high bp. I wonder if they realize that it will probably never be under control until the Cushing’s is definitely under control and also his aldosderonism. We’ll just see what happens. But I really want him moved up to the 8th floor.

2009-08-12T17:08:00.001-05:00

How great! We can buy our past at the local grocery store. Does this mean we can buy a new past? If so, I’ll change the last four years, please.

Bob has come back to our neck of the woods to do some cutting (silage). He was staying at the farm Monday night and took Dad out to supper. They came to Colby and Jess & I went out and ate with them. My sister, Sue, her daughter, Tanya & Tanya’s son, Oliver also came to Village Inn to eat with everybody. Tanya & Oliver are staying in Colby for a few days.

Tanya was nice enough to share this photo with me. My brother, Bob, our nephew Oliver and my dad.

Bill & I arrived in Houston last night. Tomorrow he has pre op labs and we meet with Dr. McC, the neurosurgeon. Tomorrow we will also find out what time he reports for surgery on Friday.

Tonight we are eating supper with two gals from the Cushing’s board. That should be fun. One of them lives in Houston and the other gal is in town for an appointment. I like when I get to meet people that I’ve been talking to online.

I’m not quite as nervous as I was before we left home. For about the last week, I’ve been a mess. Can’t remember anything and seemed to accomplish nothing. I walked around with a deep feeling of doom.

This afternoon we took the hotel shuttle to Target and got a few groceries. Didn’t need too many as most of the time it will only be me eating here. I had to use the restroom there. When the hand dryer says “feel the force” or something like that, you know this will be one of those skin moving dryers. They almost make me laugh.

We’re staying at the Extended Stay we stayed at last year when we came here for J&J’s surgeries. We also stayed at one in Milwaukee when the kids had their BLAs. Last year there was four of us and we got a room with two queen beds. That comes with a couch and recliner. In Milwaukee there was only three of us so we got a king bed (for Jess & I) and it came with just a couch. Justin likes to sleep on couches. This time there is just two of us. We have one queen bed and only got an oversized arm chair. Online it said we would have a couch, but this is waaay to small to even dream of growing up to be a couch. Just an observation.

2009-08-02T17:11:00.001-05:00

I quite often read things from Cushing’s patients saying how their family and friends don’t understand the disease. I always feel bad for them. This disease really needs to be understood. I feel fortunate that I have a supportive family. I also have several friends that are pretty supportive.

But occasionally comments come back to me and I really wonder what other people think. I think the one that bothers me the most is when it’s said that they admire what I have done in getting my family diagnosed with Cushing’s, they don’t think they could do the same. The reason that bothers me – it makes it sound like diagnosis and treatment are an option not a necessity.

If someone has Cushing’s or lives with someone with Cushing’s I think it becomes apparent that treatment is a necessity. Without treatment, patients will only get worse. I cannot imagine letting them live in constant pain, physically & mentally.

Here are some symptoms of Cushing’s.

Weight gain, particularly around your midsection and upper back

Fatigue

Muscle weakness

Rounding of your face (moon face)

Reversed sleep pattern

Facial flushing

Fatty pad or hump between your shoulders (buffalo hump)

Pink or purple stretch marks (striae) on the skin of your abdomen, thighs, breasts and arms

Thin and fragile skin that bruises easily

Slow healing of cuts, insect bites and infections

Depression, anxiety and irritability

Loss of emotional control

Thicker or more visible body and facial hair (hirsutism)

Acne

Irregular or absent menstrual periods in females

Memory loss & loss of concentration

Inability to lose weight

New or worsened high blood pressure

Glucose intolerance that may lead to diabetes

Headache

Bone loss, leading to fractures over time

GI issues

Severe muscle and bone pain

Just reading the symptoms doesn’t really sound all that bad unless you understand the disease. The fatigue and muscle weakness can be debilitating and the pain can be excruciating. The memory loss and lack of concentration can also be a big obstacle.

I have heard that Dr. McCutcheon, who is our neurosurgeon, stated “Cushing’s kills” during a presentation at a national conference. It can just be a long drawn out, painful process. If you’re cyclic and your cortisol dips too low and stays for too long you could die. Cortisol is vital to life. Also, excess cortisol can destroy your body a little at a time. Muscle weakness – the heart is a muscle, high blood pressure – hard to control with Cushing’s.

So, no there really wasn’t any choice about seeking a diagnosis and treatment.

I’m not sure that I’ve really conveyed exactly how awful and debilitating Cushing’s can be. But trust me it is, it just slowly eats away at your body and your mind.

2009-08-01T16:29:00.001-05:00

I’ve been a little lax about blogging.

Last Saturday several family members and a few friends got together to make mints for Shanda’s wedding. I don’t have any photos to share though. The mints are really easy to make. Combine 1 8 oz package of cream cheese and a 2 lb. sack of powdered sugar, food coloring as needed. The molds need to be dipped in granulated sugar before forming the mint. These freeze so they can be made well ahead of time. Elsie was the first of my siblings to get married. I was fairly young and don’t remember why she decided to have homemade mints but I do vaguely remember making them. We’ve been doing it for family weddings ever since. Although I’m not sure that we made them for my brothers’ weddings. My SIL can’t remember either. It’s always a fun time and eating a few along the way is also good! Love those mints.

Oh, you can also add flavoring but they are very good without. Sue (mother of the bride) added vanilla to this batch. She then didn’t add any coloring, the vanilla made them sort of cream colored. If we would of thought of it sooner we could of colored some of the granulated sugar and used it to coat the molds. Her colors are brown & turquoise. Cream colored mints with turquoise sugar would of looked neat. We’ll have to remember that for another time.

Today at 2:00, like most days, I thought it’s time for the kids to be taking their hydro. I do refrain from calling them to find out if they took their meds. I wonder if for the rest of my life at 2:00 p.m. I will always think of the kids! Probably most days it will at least be a fleeting thought.

We got the results of Jess’ MRCP and everything is normal, no stones found in any of the ducts. I really thought everything would be okay. I think her five weeks of puking after her BLA was just something that happened as a result.

Two weeks from today Bill will be recovering from pituitary surgery. We can pray that he will be one of the few that goes into remission with a first surgery. It looks like I’ll get to meet another Cushie mom while at MDA. Last year when we were there I also got to meet another mother.

This week, my sister, Elsie, took Dad to Florida to see Bob and his family. They just moved a couple weeks ago but this was a good time for her to go and it was probably good for Dad to see where they live. I stole a few of her photos to use here (thanks Elsie).

Elsie & Dad – my brothers do silage cutting for McArthur farms

They went to the beach. Gianna, Genial & Grace headed for the water.

Bob, the white legs tell you this isn’t his normal habitat!

Mud (sand) baths?

2009-07-28T00:02:00.001-05:00

I found this song tonight on another blog.

As I read the words, I was instantly back to Justin’s jr/sr years of high school. He was in very bad shape and we had found no doctor to help us. He went through a suicidal phase, I believe in some people that is a part of Cushing’s. It’s not something I talk about much. I lived in fear for quite awhile never knowing if he would be alive the next day. I cried so many tears thinking of the torment he was going through and there was nothing I could do for him.

He’s My Son – Mark Schulz

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Can You hear me?
Can You see him?
Please don't leave him
He's my son

Just because I found a song that reminds me of Justin in no way diminishes the pain I feel for Jess & Bill. Just haven’t found the song for that. I think there may have been more heartache with Justin because he was getting no help and he was sort of blazing the trail for our family.

2009-07-23T22:35:00.001-05:00

I finally ordered new glasses today. Should have them in a couple weeks or so. It’ll be nice to get rid of these “readers.” I really need them or I can’t read anything but it’s a pain to have to deal with them. Jess went with me just to make sure I didn’t picky out anything too dorky!

Jess had her MRCP (Magnetic Resonance Cholangiopancreatography) today. I really don’t think anything will be found. Dr. M decided to order this test back when Jess was in the middle of her five weeks of puking after she had her BLA. I think the vomiting was just something that happened and really has no explanation. Guess we’ll see.

She also had blood work for Dr. M. He wanted to check her liver panel again. Actually, this was going to be done several weeks ago. When we went in a few weeks ago to do the blood work, the orders weren’t there. Now, if the supervisor would of been the one helping us, he would of just drawn the blood and worried about getting the orders later. Of course the one time he did this he trusted us to know what tests were being ordered. It seems a particular nurse has trouble actually getting the orders faxed over to the lab. Anyway, the last time we were there, we got tired of waiting for the orders and said we’d be back. Kind of forgot about it for awhile then. Hope the liver panel comes back okay.

Justin told me the other day that he forgot his afternoon dose of hydro one day. I asked him when he remembered. He said when his eyes went really weird at work he remembered that he needed hydro and took it right away. I thought it seemed like a weird symptom but he said his eyes cleared up after taking the meds.

Bob’s family got moved to Florida last week. I’m sad. My sister is taking Dad to see them next week. When they first talked about moving, Dad said he really wanted to go down and see where they were living. I think Elsie is going so soon because school will be starting in a few weeks (yikes!) and it will be harder for anyone to get away and take Dad to Florida.

A few more photos of the farewell meal for Bob’s family.

2009-07-22T06:56:00.001-05:00

♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♫♫♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫

“I don’t know what I’m supposed to do

so I sit down and I cry too”

♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫

From the song “Her Diamonds” by Rob Thomas

I don’t think I get this quite the way it’s meant in the song. But it seems quite appropriate at the moment.

2009-07-20T23:22:00.001-05:00

Cushing’s is a b**ch. I’ve always thought that the mental part was at least as bad if not worse than the physical. Of course I’m looking at it from a different perspective than the patient. I just (?) have to live with someone who has Cushing’s.

This is a quote from a “cured” Cushie.

“My relationship with my hubby is way better. This disease does a good one on marriage - for anyone who thinks their spouse is the worst person ever, I'm sorry but you need to take a few deep breaths, grit your teeth and wait for cure before deciding on a break-up...it may turn out that a lot of the blame is at your feet - not your partner's. It really distorts your view of other people so try not to jump to conclusions about someone with this cloud over your head.”

I really, really like that. With Bill I never know, is it him, is it the Cushing’s? Who is he? Do I know him? Did I ever know him? Which one of these “Bills” that talks to me is the real one? Does he know, does anyone know? Will the real Bill please stand up. Will I know you after surgery if you go into remission? Will we be able to have a regular conversation without some innocent remark setting you off?

And some days you wonder why I hardly talk anymore. If you ever get a cure/remission will I ever be able to make you understand what it’s like to live with this damn disease as my partner?

Since we started suspecting that Bill had Cushing’s, I’ve wondered about his sister. She had/has a lot of symptoms. And like Bill her blood pressure has been high for years, starting when she was really too young to have to worry about that.

Bill said when he talked to her the other night she told him she is getting more symptoms and is starting to feel a lot like Bill does. That must be miserable. She does have insurance now but you wonder what use it is as I doubt that she would have any better luck with her local doctors than we had with ours. I really don’t know if she could afford to travel to a specialist, but I suspect it would take a lot of saving to get there.

What a truly horrible disease Cushing’s is. And no one understands what it puts a person through.

2009-07-17T23:08:00.001-05:00

Plane tickets bought and reservations made at the Extended Stay in Houston. Somehow that makes it seem more real than when I scheduled the surgery.

I have a very nice boss. She had me use the points on the store’s credit card to purchase the plane tickets. She’s been a big support all these years. Good thing, it would of been tough keeping my job without her.

2009-07-16T21:57:00.001-05:00

Bill is home. He had been staying in Plainville for about a month. It was closer to the rig. Now the rig is closer to home so he is home again. In the time he was gone he was only home a couple of times and then just for a few hours. When he was home either he was sleeping or I was at work – or both.

After not seeing him for so long it’s somewhat astonishing to see what he looks like. When you see someone every day it’s easy to get used to how they look. Cushing’s is really doing a number on Bill. He looks old. Although I do think his pain level has something to do with how he looks. The higher the pain level, the older he looks. After some good meds and some time for them to kick in, he doesn’t look quite as old.

The texture of his hair has changed a lot also. I used to envy him his hair. It was black and thick. It’s quite gray now and just has a weird texture to it.

I’m so glad his surgery is only a month away. Of course we neither one have real high hopes of remission but maybe some relief. He is in incredible pain and still works. I truly don’t know how he does it. Sheer willpower because he knows if he doesn’t keep working he will no longer have insurance and no hope of surgery. He’s really caught in a bad place. It makes me feel so bad for him. There really is nothing I can do to make him feel better. I wish there was.

To make it all worse, he hasn’t really had a day off in about a month. I know, a while back I was moaning because there wasn’t enough work which meant not enough money. Now he’s working steady and it’s about killing him.

We leave for MDA in Houston on August 11. I’m starting to count the days.

2009-07-14T21:56:00.001-05:00

I have seen this list before but tonight when I saw it posted on the Cushing’s board I thought I should include it here. I need to study it and have the kids study it also. There is so much to learn after having the adrenals removed.

This is from the UK Addison's site

How to distinguish between adrenal insufficiency symptoms related to inadequate Florinef or Cortef dosages.

How can you tell if your fludrocortisone dose is inadequate? Not always easy, because the symptoms are more subtle than the grinding headache, nausea and whole body chills of not enough hydrocortisone. In the past, people who need more fludrocortisone have typically reported at least some of the following:
1. Cold hands and feet - can also be numb because blood pressure is too low for proper circulation
2. Shaky hands
3. Feeling extra sleepy
4. Unable to get through the day without a rest
5. Feeling extra thirsty
6. Needing to pee after lying down for an hour or two
7. Muscle cramps, tics or spasms
8. Rapid or erratic pulse, perhaps with intermittent slow beats
9. Feeling dizzy when getting up out of a chair/bed
10. Sudden headache when getting up out of a chair/bed
11. Specific type of headache, eg eyebrow piercing
12. Salt, liquorice or lemon juice cravings
13. Non-specific exhaustion and despair

Symptoms typically associated with inadequate dosage of Hydrocortisone/Cortef include:
1. Headache
2. Nausea
3. Vomiting
4. Diarrhea
5. Chills
6. Extreme weakness
7. Inability to speak or slurred speech
8. Dizziness
9. Loss of appetite
10. Sudden irritability
11. Piercing lower back pain
12. Awake from sleep feeling like you can’t move
13. Abdominal pain

Bill is home. The rig’s next location is only about an hour from home. The last location was over two hours away and he stayed in Plainville. He’s only been home a couple of times for a few hours in the last month.

Last night I finally got brave and went through the whole stack of medical bills that has been laying on the table. It wasn’t quite as scary as I thought it would be. I also went through all the insurance statements. It seems odd that I can find nothing for Justin’s surgery. There are a few insurance statements that relate to the surgery. I even went through the statements online and can’t find one. I know how much it should be because it should be real close to the amount of Jess’ bill. Plus, we’ve not gotten a bill from the hospital for his surgery. Weird.

And I was right, my brother and his family didn’t leave for Florida today.

2009-07-11T23:02:00.001-05:00

Jess & I had an interesting time today.

We took Dad to lunch. The little girls went with us for the last time. They should leave for Florida next week. I meant to get a picture of Dad, Jess & the girls together but when we got back to the farm there was a mad dash for bathrooms and the photo never got taken.

As we were returning to the farm after lunch we saw there were goats out at my sister’s house and her family was gone for the weekend. She just lives a half mile from Dad. One of my first thoughts when I saw the goats was “I wish I wasn’t wearing flip flops” as I knew I would have to help round them up. Jess & I found them in a pasture half way between Dad’s and Elsie’s houses. We took them on through the pasture and circled them back to their place. My brother and cousin went up and opened up the fence to let them in the back way.

Trust me, you don’t want to wear flip flops and capris while traipsing through a pasture. But there really wasn’t time to go find a pair of shoes at Elsie’s house. When we got the goats up to where my brother Bob had the fence (not the gate, it was the fence) open, she told him “Well, I can cross goat herding off my things to do list.” She can also mark off herding goats in the heat (around 100°)without enough hydro! Oh, and she was also in flip flops and my brother was in sandals. She felt pretty rough when we got done, took some extra hydro and kept the AC on high the whole way back home.

She maybe wouldn’t of felt quite so bad but this morning she weaned on her hydro. She was going to drop from 15 mg to 12.5 mg but instead just took 10 mg. Neither of us even gave it a thought when we got out of the van to go chase goats.

So that was our excitement for the day.

Justin says he is feeling better but still taking some extra hydro. Hope it’s all better soon. He has been back to work for two days. I think it tires him out.

2009-07-09T22:35:00.001-05:00

Last night we had a farewell meal with my brother, Bob and his family. It seems they really are moving to Florida. It’s been talked about for so long that it has always seemed to be in the distant future. But the future must be here because as of last night the plan was for them to pull out next Tuesday. I figure that really means they will be gone by Wednesday or Thursday.

Bob, Jackie

Genial, Grace & Gianna

Jay & Grace

Jay & Gianna

Jay & Genial

The fire pit mostly smoked and hot dogs were eventually put on the grill. Jess is in the black tee, looking good, huh?

Jay, Gianna & Genial roasting marshmallows.

Shooting off roman candles. No this is not safe! But no one got hurt.

Part of the family enjoying the meal.

Good bye, Bob & family.

Colby now has three confirmed cases of the H1N1 virus. I know that doesn’t sound like a lot but considering how small of a town we are, it really is. And there are many more that are quarantined at home. Time to be very careful.

2009-07-07T23:18:00.002-05:00

Sometimes I am so stupid!! Today I was at Palace Drug picking up a prescription for Justin and standing next to me was a lady buying a bottle of B12. Light bulb moment. I haven't taken my B12 since before we went to Milwaukee for surgeries. How dumb is that. It's prescribed for once a week. No wonder I haven't been feeling so great and feeling sooooo depressed. Granted, there is a lot going on right now that could be reason to be depressed but it usually doesn't get me down quite this bad.
So I came home and took a dose and I actually tackled all that mail that has piled up on the table for two months. Scary stuff. Bills that should of been paid a month or two ago. I hate paying bills late. Which is why most of ours are now set for auto debit. The last few years, I just can't seem to remember to get things paid on time. But these were all medical bills, not set to auto debit. I remember that I did used to be organized. I keep hoping that person comes back to live in my body - soon.
Justin has an ear infection and a terrible cold. Unfortunately it zapped him good before he was really aware of it. By the time I was called this morning he looked really bad. Mostly I think he was low on hydro. He had a doctors appointment today and got some meds. Extra hydro and a lot of sleep today and I think he was starting to feel some better. I brought him to work and made him sleep on the couch.
Some day we will all get used to this no adrenal gland thing and not get quite so worried with every little thing. But he looked so bad when I got to his house and he had been vomiting. I had reason to worry. A few days ago he had weaned down on his hydro. I told him until this cleared up he better go back up on the hydro. No need to take chances. I think it was just poor timing that he was getting an ear infection at the same time he was weaning. He had felt really good up until last night.
It seemed like I spent half the day running around for/with him.
There is a learning curve to all this and obviously we have a lot more to learn.

2009-07-05T22:01:00.001-05:00

Jess & I stayed out way too late last night. On our way home from Sue’s we saw that the Klipperts were still out shooting fireworks. So we decided to stop. We stayed and talked for a long time. Morning came way too early today.

Saw Justin for a few minutes tonight. I asked him how much hydro he was taking at the moment and how he was feeling. He said he’s taking 15 mg in the morning and 5 mg in the afternoon. I asked how he felt on the lower dose and for once it wasn’t a wishy washy answer. He said he thought he felt better. So that’s good.

Jess completely skipped her afternoon dose yesterday. That wasn’t the original plan just the way it turned out. She seemed to do okay. But I’m not sure it’s something that will happen often. Today she took 2.5 mg in the afternoon. She’s on 15 mg in the morning.

We’ll see how it all plays out for both of them.

2009-07-04T18:06:00.001-05:00

Happy July 4th!

Long may she wave.

Tonight Jess & I will go out to my sister, Sue’s house to watch the fireworks. She lives right outside of town so we have a good view from her front porch. We usually set off our own fireworks while watching the public display. She is outside the city limits so it’s legal to use them at her house. Some years a lot of the family shows up and some years it’s just a few of us. I think a couple of years ago there was just Sue & I.

I was thinking about what July 4th was like when we were kids. I don’t remember ever going to a public fireworks display. My older brother, Sam, usually orchestrated one. I think what he liked the most was using firecrackers to blow cans into the air. He spent a lot of time getting everything set up just so and then lighting the fuse. It seems he spent a lot of time doing that in the driveway.

Dad seemed to usually be in the field. I remember some years Mom would have hotdogs, chips and pop for lunch. Talk about a treat! I remember eating on the front porch at least once. That seemed pretty cool.

I was still playing with Shan’s camera today. After we took Dad to lunch I took a picture across the road from his house. He has asked me to several times. I wanted to wait until the pasture was green and then I kept forgetting to take a photo. This is pretty much what he would see if he walked out his front door.

I think he wants the photo because he misses seeing this view. He doesn’t leave his house often these days. Some things are just harder when you’re ninety.

My sister, Elsie, just lives a half mile from Dad. We stopped there on the way home. Her daughter, Manda and her family are there for a few days. Jeff & Jordan were not there at the moment but Isabella was. She made a great (and willing) subject.

Isn’t she just so cute?

Manhandling the dog!

With Jess.

Just running.

Feeding the cats.

Love those purple shoes!

Helping (?) her Grandpa.

Ronnie getting ready to cut wheat. I was standing across the road in front of their house. Shan’s camera really has a great lens.

I always have liked interesting windows. This is on the side of a cattle shed.

2009-07-03T22:10:00.004-05:00

Jess picked up an application for a job today. They told her not to bring it back until Monday as they will be very busy this weekend. It will seem really odd, her having a job. I’m assuming they will hire her.

Justin is starting back to work next week. Wednesday will be his first day back. I saw him for a few minutes today but forgot to ask him how he was feeling after he cut back on his hydro.

For the last several months my left shoulder has been pretty sore. A lot of days I can’t lift it above my head without a lot of effort. I’ve come up with a lot of different reasons for it being sore. Not too long ago my right shoulder started aching sometimes. Yesterday I got a few weird, sharp aches of some kind on the top of each foot. It has crossed my mind that I could have rheumatoid arthritis. I got to thinking that I’ve only been taking half a dose of my imuran for Crohn’s. I feel okay on that dose and since it has the potential to cause liver damage, I’d really like to take as little as possible. I remembered that when my boss’ sister was on certain drugs for her RA the drugs also helped with some of the GI issues she had. I wondered what would happen if I started taking my evening dose again. So last night I took my dose and woke up this morning with barely any pain in my shoulder. That’s good except I’m afraid it means that I do have RA, at least early stages. It will be interesting to see how this goes. I guess the good thing is that the same meds are quite often used to treat Crohn’s and RA.

My niece had to get a camera for the college horse program. I helped her order it a few weeks ago. She brought it by today for me to play with. She got a Nikon Coolpix P90. I had found this camera online several months ago and was really wishing that I needed a new camera. It has a 24x optical zoom!!! Impressed me.

I took it out and played with it after work.

I was probably 20 ft. away from these flowers.

I have no idea what these are, but they photograph well. They look even better close up.

We ran into a friend while at the Experiment Station taking pictures. It’s a great place to take photos, so many plants and flowers. I liked his tee.

In the photo below, I was standing right out the back door at work. The power pole that is in the center of the photo is three blocks away. Pretty impressive, even if the photo is boring.

I didn’t bring the instruction book home. I should of because I want to see what some of the “extras” do.

2009-07-01T22:59:00.003-05:00

Since we have a surgery date I need to start checking into flights and hotels. I always hate doing that. I'm always sure that as soon as I book one, I'll then find one that is a lot cheaper. I'm going to book our flight using the points on the store's credit card. My boss told me to use them. That was very kind of her. She has always been supportive.
Tonight Jess had a chiro appointment in Oakley. We set up an appointment for Justin next month. He and Jess can go over together. After the appointment we went on to Grinnell and ate at the VFW with some of the family.
Jess thinks her hydro dose might still be a little high. I think she said she'd wait a few days and then drop another 2.5 mg and see how it goes.
I talked with Justin tonight and he's thinking that he may also need to be dropping his hydro dose. At first we thought that his dose was too low, so he added an extra, small dose some evenings. Last night I remembered that he got some of his highest midnight results when he felt the worst. So I got to thinking that it's possible that he's too high now and that is why he isn't feeling the best. Or maybe I'm wrong. Guess we'll see. He said he's talking to his boss soon to get back on the schedule. Hope that goes okay.

2009-06-30T20:48:00.002-05:00

Today I got a date for Bill's pituitary surgery. We will be back at MDAnderson with Dr. McCutcheon. Surgery will be Friday, August 14, with consults the day before.
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.

2009-06-29T19:31:00.001-05:00

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.

2009-06-28T19:13:00.001-05:00

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!

2009-06-28T15:11:00.001-05:00

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.

2009-06-28T13:35:00.002-05:00

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.

2009-06-27T21:19:00.010-05:00

Today turned into a family day. Jess & I were picking Dad up and taking him to Hoxie to eat lunch at a horse show that some of my family was participating in. My sisters' families have always done horse shows. Now the second generation is starting to show and the older generation (my nieces) are starting to judge.
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.

My (great) niece, Isabella was in her first show today. She told me that she trotted, she was very proud of herself for that. She also got a blue ribbon. "And I got candy too. Ribbons are fun, so is candy." She's so cute.

If you were to ask her what her participation number was, she would tell you "eleven, two." How funny.

Her brother, Jordan is older and was in more events. He rode and rode and rode when he wasn't showing. I heard him ask his mom before an event "Can I go as fast as Goldie can run?" Mom's answer was "no."

Riding all day makes a cowboy thirsty.

Jordan and Goldie having a talk.

My nephew, Jay also was there. He's been showing horses since he was very young. He's an uncle to Jordan & Isabella.

Two of my sisters were there. Elsie was calling the show. Sue probably came because she likes horse shows and misses them now that her girls are grown. She is also Shanda's (the judge) mom. One of my SILs showed up about the end of the show. She then took Dad out to supper and then took him home.

And of course my niece, Amanda was there. She is the mother of Jordan & Isabella.

Elsie's husband, Ronnie helped set up the arena for certain events. He really shouldn't have been because last night he was flipped off his four wheeler in the pasture and looked to be pretty sore today.

Somehow I managed to fall asleep for awhile in my chair. I missed several events that Jay & Jordan were in. But Jess used my camera and took a lot of photos. In fact I need to give her credit for the picture of Shanda that I used.

All in all it was a good day. Kind of long and warm though. Not hot, just warm.

2009-06-26T22:27:00.004-05:00

Bill's MRI finally made it to MDA today. That is two weeks since I sent it. But that happens every time I send something there. I always think, I'm in Kansas, there is only Oklahoma between me and Texas!! What can possibly take so long.
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.

2009-06-24T07:50:00.003-05:00

A piece of flair I saw on Facebook.

At the moment life would seem almost normal if we didn't have Bill's surgery looming over us. And I try not to think about that too much. But in the mornings when I first get up to do papers, I have a very heavy feeling in my body. It takes a moment to identify the source of the feeling. Quite often by the end of papers my legs feel a little like jello.

My biggest problem with MDA is mail. I'm not sure that I've ever sent anything there but what I had to send it again. I think it gets hung up somewhere in their mail room. Very frustrating.

Waiting mode is hard - I want to know the ending NOW.

2009-06-21T17:12:00.008-05:00

Jess has now gone a complete week without throwing up. I hope that means she is out of the woods. She has weaned back down on her hydro and today only took 20 mg in the a.m. and 5 mg in the p.m. It seems like she's done okay on that dose. This is the dose that Dr. F prescribed for both J&J upon discharge after their BLA.
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.

I'm thinking of starting on the quilt block for $5 Quilt. I'm just a tad more industrious than I am most days. I keep wondering if the kids really remember when I kept the house neat (mostly), got meals ready, kept up with laundry and did things for myself. I remember, I just wish I still was like that. Maybe it'll come back to me.

After church today, someone was asking Jess how she was, then she turned and asked how I was. She then said something like this has probably been hard on me too and I should take care of myself. I know she meant well, so I didn't laugh.

2009-06-19T23:42:00.005-05:00

Jess had a follow up appointment with Dr. Matchell yesterday. She had blood work in the morning. Even though she is feeling good some of her labs are off again. Mainly ones with her liver and pancreas. So he's going to order an MRCP -

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.

2009-06-17T23:08:00.002-05:00

Well, it has been four complete days that Jess has gone without throwing up. She seems to be feeling and acting so much better. So glad that is behind her.
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.

2009-06-14T22:30:00.003-05:00

This may be a red letter day. It's almost 11 p.m. and Jess hasn't thrown up once today!! Although yesterday she did throw up twice. Her usual in the morning and then once late in the evening. I'm hoping that wasn't today's and it just came early.
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.

2009-06-13T22:28:00.008-05:00

A little bit of normalcy today, a bridal shower for my niece, Shanda. She's such a nice gal. Pretty too, don't you think?
Sister, Tanya, mom, Sue, Shanda, and mother-in-law to be, Jane - good looking group

Jess (doesn't she look good?) and one of her favorite little cousins. She used to go and play with Liz and her brother about once a week after school. She didn't see them much while Cushing's was taking over her life. I'd say Liz missed her.

Shanda & Tanya with their niece, Emma. We were playing a game to see how much we knew about the bride and groom and how much they knew about each other. For every question Shan got wrong she had to put another piece of gum in her mouth. Looks like it's getting pretty full in there! She cheated some and had Emma chew it.

Good drinks and good food, which seems to be mostly gone.

After the shower, we took my dad out to eat supper. I tell you, Dad has lost his "edit" button. As we were about ready to leave to eat, my niece, Tanya and her baby (4 mo) showed up. As Dad was looking Oliver over, he said to Tanya "Well are you going to raise him or drown him?" It cracked us up. Tanya thought it was funny. But I swear, Dad now says things that he probably never even used to think. I've gotten used to it, even when he says things in public.

Jess is doing fairly well. For the most part she just throws up once every morning. She did get in an extra one tonight though, maybe too much ice cream? May not take much to be too much at the moment. Her stomach must of contracted a lot with as little as she has eaten in the last six weeks.

Tonight Jess said that maybe there are hormones off and it's like being pregnant and having morning sickness. Could be something to that. There does seem to be a lot of similarities between Cushing's and pregnancy. But there is a definite end to pregnancy.

I think it might be time for Jess to wean some. She has been taking 45 mg since getting out of the hospital. Her face is breaking out some and she's been just a bit emotional. Signs (I think) that she needs to wean. She said she'll try 35 mg tomorrow.

Tomorrow we should make it back to church. We haven't been since the day before we left for surgeries. Either four or five Sundays now that we've missed.

2009-06-12T22:38:00.008-05:00

I've neglected my blog for awhile now. Jess being in the hospital for the second time since having her adrenals removed, just really threw me into a tailspin. Wonder if something like that is visible to the outside world? Seems to me I acted just like I always do, but felt like the world was spinning out of control with nothing or no one for me to grab onto.
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.

2009-06-08T21:44:00.003-05:00

Jess is home from the hospital. It has been a little over 24 hours since she last threw up. It's as if she turned a corner last night. I sure hope it stays that way. She's very tired and has been sleeping for a while. We'll have a follow up with Dr. Matchell this week. I'm going to ask him if he will have lipase checked when she has blood work done. I actually don't know much about that but know that it is connected with the pancreas and the few times hers has been checked lately it has been high. If the numbers are falling that could very well have been the cause of some of her problems. I'm thinking if the number is falling and she continues to keep food down we may not have to go see the GI. That would be nice to have this problem correct itsself. Poor girl has really had a tough time since surgery.
-------------------------------------------------
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.

2009-06-08T06:52:00.003-05:00

I'm starting to feel like I did back when we were first looking for answers to Justin's medical problems. I think the difference this time is that doctors really believe she has a problem.
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

2009-06-02T21:13:00.004-05:00

Two countries salute chocolate on their national coat of arms. Fiji features a cocoa pod and Ghana features a cocoa tree.
Tuesday
June 2

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.

2009-06-01T22:55:00.002-05:00

According to a 2007 Consumer Reports
taste test, Hershey's Cacoa Reserve Extra Dark with cacoa nibs was
rated the best tasting dark chocolate bar on the general market.
Monday
June 1

2009-05-31T22:52:00.002-05:00

Hell hath no fury like a woman who has sworn off fudge and chocolate.
Sat/Sun
May 30/31

I'm once again waiting for a phone appointment with Dr. F. I'm not nervous this time. Actually, I'm not expecting much out of the appointment. I have a feeling he also has no idea why Jess continues to vomit. But it would be great if he did. Jess and I will both be talking with him. I think there are questions that only she can answer.
Jess has an appointment with Dr. Matchell a week from tomorrow. I don't suppose he will have answers either unless he's thought of something since she was in the hospital. This Wednesday she has an appointment with Dr. Matt. I think we may be holding out more hope from him than from anyone else. His treatments have helped with her gall bladder pain. I took treatments from him for awhile when my meds for Crohn's didn't seem to be working as well as they had previously, and things improved. I've know that some people seem to think this kind of chiropractor is just a quack, I think different. He has helped a lot of people in our family.
-------------------------------------------------------------------
Dr. F says to up her Florinef and see if that helps with the vomiting. And they both need to get labs done and a UFC. I also need to call the hospital and get J&J's records from their surgeries. Need all Jess' labs from her hospital stay here. Need to fax the path report to Dr. F.
I have no idea what it means but Jess ate half an orange more than an hour ago and so far it's stayed down. She's trying an anti-nausea patch. While it doesn't keep her from vomiting she is not doing it as much. Maybe that's helping with the orange.
She said tonight that she doesn't think about having had a BLA about a month ago, she thinks about it being almost a month since she ate food. I told her I think the same thing, but I think of Justin as having had surgery a month ago.

2009-05-29T22:49:00.001-05:00

To make chocolate shavings, warm the smooth back surface of a chocolate bar by stroking it with your palm, then scrape the blade of a paring knife across it at a 45-degree angle.
Friday
May 29

Jess is still having some trouble. We're working on some doses to see how she does with higher hydro. Tomorrow we're trying a different kind of anti nausea meds. I told her it was a lot like being pregnant!
We're not taking Dad to lunch tomorrow. I know Jess isn't up to it and I'm not ready to leave her home alone for that long when I'm not close to home. I work just four blocks from the house, so I don't see that as a problem.
I have a phone appointment with Dr. F Sunday night. Wonder what he'll have to say. He requested the appointment after getting the report from Dr. Chiang.

2009-05-28T22:47:00.001-05:00

The cocao plant is indigenous to Central and South America and produces a multihead pod that is shaped like a mini football.
Thursday
May 28

2009-05-27T22:45:00.001-05:00

Supplementing the average American diet with half an ounce of dark chocolate and four tablespoons of cocoa powder per day may have a health effect on blood cholesterol levels.
Wednesday
May 27

And the beat goes on............................nothing has changed.

2009-05-26T22:43:00.001-05:00

Shannon: As if I'm going to start eating chocolate.
Boone: Shannon, we may be here for awhile. - From the TV series Lost
Tuesday
May 26

It rained all day today.
Nothing much different with J&J today.

2009-05-25T20:30:00.004-05:00

Grasshopper pie has a chocolate cookie crumb crust and is typically a gelatin and whipped cream dessert with creme de menthe, drizzled with chocolate ganache.
Monday
May 25

I've been having a hard time today remembering that it is Monday. I kept thinking it was Saturday. Three day weekends don't usually confuse me like this. I think it has something to do with Jess having been in the hospital.
Today my dad turned 90. His official party was last Sunday. Elsie brought him to town today and we went and ate lunch with them. Sue & Shan were there too. Jess just stayed a little bit and then had me take her home. As we were driving out to Village Inn, I thought she didn't feel too good. She had seemed better when she first got up this morning.
Before she asked me to take her home she took 20 mg of hydro. We can't be sure whether she needed that much extra or if she lost the other when she vomited this morning. She had drank too much water in too short a time period. She seemed to feel better after she took the 20 mg. Definitely a learning process.
I haven't seem Justin for a couple of days. I should call him tomorrow and have him come by.

2009-05-24T21:53:00.004-05:00

Among life's mysteries is how a two-pound box of chocolate can make a person gain five pounds. - Anonymous
Sat/Sun
May 23/24

Jess is home from the hospital. It seems like it's been a long week. Probably a lot longer for her. I'm glad that tomorrow is a holiday and the store is closed. Now I need to seriously start cleaning, or at least considering cleaning my house.
The first week home after BLAs has been eventful. Thankfully they didn't both have problems. So far Justin seems to be doing pretty good. Probably the most noticeable think is that his shoulders are straight. He never had a true buffalo hump, just terribly slumped shoulders that would periodically straighten up. Actually, I found a picture on some medical website about Cushing's that showed a hump that looked just like Justin's. I used to walk past him and poke him in the back and tell him to straighten up having no idea what was really wrong.
A whole day off tomorrow and nothing that I have to do, wonder what I will do.

2009-05-22T23:07:00.001-05:00

Chocolate Black Russian
1 oz. Kahlua
1/2 cup chocolate ice
cream
1/2 oz vodka
Blend ingredients and pour into
a large cocktail glass - http://www.cdkitchen.com/
Friday
May 22

Jess is spending her third night in the hospital. I'm home for just a bit. I was in and out of her room all day. When I went back about 5 p.m. she seemed better than she has in days. Although I could hear her throwing up as I came down the hall. She said she thought that she gagged on a pill she was taking. She was pretty animated after that, ate a little sherbet and was talking and watching TV.
When I left last night she seemed pretty good. I got there around 7 this morning and she looked sick. I was shocked at how bad she looked. Then 8:00 came around and she couldn't get her hydro down without vomiting. The nurse wasn't too concerned even though I'd told her why it was critical that she get the hydro. I asked if she could have an injectable. hhmm, hhmm, hhmm. She'd have to call the doctor and he'd have to okay it, etc., etc. Right, okay, call the doctor. I was starting to get upset, Jess was getting worse and while I don't think she was in a crisis, I think she would of been headed there fast.
I can't remember where I was going but I ran into my sister, Sue, who works in Human Resources at the hospital. She asked me what was wrong and I told her. By now it's a half hour to forty five minutes after she should of had her dose, and I was getting a bit panicked as I wasn't sure she was going to get anything before she had a major medical meltdown (or I did). Sue said we needed to talk to Kelly who is the social worker for the hospital. I had no idea she could help me. Kelly was right there in the hall and Sue went over and explained my concerns and Kelly went and had a talk with the nurse. I guess the nurse then went ahead and called the doctor and they got him out of an exam room to talk to her. I did understand later that there are certain times (that would be clock time) when you call the doctors unless it's serious. I hadn't yet convinced her it was serious (!).
Dr. Matchell showed up a few minutes later (his office is just across the lawn from the hospital) and one of the first thing he said was that they should give her 100 mg of solu-cortef in her IV. YEA! That's what I was hoping for. We decided that he had studied up on this as he seemed sure of himself and yesterday when I had mentioned it he heemed and hawed. So good for him, he might start to redeem himself for the way he treated Justin and I when I was first looking for a dx.
By the time he had showed up I had gone to Sue's office and found Dr. F's emergency letter in my email and printed it out. I had not brought one with me as I didn't believe she was in crisis, but by now she could of been headed there. After he had ordered the IV I handed him the letter and he glanced over it, nodding his head. Guess what he'd found agreed with Dr. F! He gave the letter to the nurse and as they were all leaving the room later I heard her telling someone to copy it and one should stay in her file at the hospital and one go to the doctor's office.
I felt much better after they got the IV started. I had been afraid that everything she had gained with potassium was going to be lost. Her labs gained the most in potassium today after she had the IV.
She also had another x-ray today and he said things were cleaning out. He also ordered an abdominal CT to make sure everything was okay there. Must be as we never heard any results.
Well, headed back to the hospital, Bill's just leaving for work. This morning as I ran this all through my head, I think I figured out how this all came about.
10:40 p.m.
Just left the hospital. Jess seems to be doing very good. She hadn't vomited again and did keep down the sherbet she ate.
So here's what I think. While in Milwaukee we used a lot of stool softeners and suppositories. They seemed to be working, not as fast as I thought they would, but working. She was keeping nothing down so when she quit having BMs, I presumed she was empty. I had originally thought that she was vomiting because she was constipated and there just wasn't room for anymore (!). But when I thought it was all out and she was still vomiting I was stumped. But from the x-rays at the hospital we know there was a lot more in there. So I think it was a vicious circle. She was constipated, nothing would stay down so she got dehydrated, because she got dehydrated nothing would move in her bowels, because nothing would move, she could keep nothing down, because she could keep nothing down, she got more dehydrated, and on and on and on.
I'm also wondering if she was absorbing her hydro okay. And of course if she wasn't feeling good she might of been using it up faster. I'm guessing her solu-cortef IV has a lot to do with how good she is feeling now. And of course all the IV laxatives. So we are definitely learning things here. Her mood was very good tonight, almost like her good days before surgery. I'm thinking she might be discharged tomorrow.
This morning really was frustrating, I just could not make the nurse understand - THE HYDRO IS VERY IMPORTANT TO HER LIVING! And I was very nice about it, maybe she would of believed me if I'd been really cranky about it all, but just didn't have that in me. I just wanted Jess to get her hydro.
I think what has thrown me all along is that she has never had any abdominal pain. I had presumed that if she was still badly constipated there would be pain.

2009-05-21T23:06:00.005-05:00

At first, cocoa beans are creamy beige in color, but they change to purple when exposed to air.
Thursday
May 21

One more night in the hospital for Jess. If the laxatives (sorry Jess) work and if her potassium stays up, she will be released tomorrow. We'll have to keep on top of things and hopefully things will work themselves out.

2009-05-20T23:59:00.001-05:00

What you see before you, my friend, is the result of a lifetime of chocolate. - Katherine Hepburn
Wednesday
May 20

Took Jess to the ER earlier. They ended up admitting her. Some of her labs were off and she's still vomitting. I think we may have a handle on it. While she seems to feel pretty good, I think her hydro dose is too low. We're going to switch things around a little and see what happens. Of course while in the hospital they will only administer the meds as they were prescribed. Guess it won't hurt if they don't know that I gave her 5 mg of hydro before I left the hospital. If I'd gone through proper channels, we would of had to talk to a doctor that has no idea what is going on. I hope my instincts are right. It seemed that the labs that were off would indicate AI, even though she really isn't exhibiting many signs of that.
I came home and will go back as soon as I finish papers in the morning.

2009-05-19T19:27:00.002-05:00

Boston Cream Pie was created by chef M. Sanzian at Boston's Parker House Hotel in 1855. This cake has two layers of sponge cake filled with vanilla custard, topped with a chocolate glaze.
Tuesday
May 19

I've cleaned the inside of my fridge. Looks good, wonder why I didn't do it ages ago. Have sorted some of the junk mail and done a little laundry. Too bad that's just the tip of the iceberg.
My niece, Tanya & her three month old son, are visiting her mother this week. She brought Oliver in the store today to order some photos. He is so cute and he laughs a lot. They're moving from South Dakota to Kansas City so we might see them more often.
Jess is still vomiting some.
Once again my cell stayed in my purse at work and I never even noticed until late in the day. Obviously, I don't get a lot of calls!

2009-05-18T23:23:00.002-05:00

Chocolate stain removal: Rinse stain with cold water. Rub in liquid detergent: let sit for five minutes. Soak for ten minutes in cold water and rub every three to five minutes. Rinse thoroughly.
Monday
May 18

The few days we've been home since J&J's surgeries seem kind of strange. It's as if I've walked back into my life after being absent for a very long time. I don't quite know where I fit or what I should be doing. Well, I guess it's pretty obvious what I should be doing at home - cleaning house. I must of been half blind! If I think about cleaning the house as a whole, it's way to daunting. So I'm just starting to do a little here and there and it'll get done. It'd be easier if Bill didn't sleep days. With Cushing's, his sleep isn't the best and I hate to make too much noise and wake him up. So I don't get a lot of cleaning done while he's home.
Today, I was half way through the workday when I realized I had never taken my cell phone out of my purse. I would never of done that before surgery. I always wanted the phone with me in case I got a call from a doctor's office. As I was working, I felt really strange - it occurred to me today how much time I have spent thinking of things related to Cushing's. I would run scenarios through my mind in regard to setting up appointments, the appointments themselves, what would happen if the appointment went this way, or if it went that way. I think I was totally consumed by Cushing's. Today was so different. I could keep my mind on what I was doing, I didn't have to check and double check what I had just done.
Yesterday at Dad's birthday party, no one (meaning my sisters) would ask me to do anything. They just let me wander around and take pictures. I thought about going to help a few times, but was pretty sure they would tell me to just take it easy. So I just decided I'd do that. I felt a little guilty, but not much. They were probably afraid they'd send me over the edge!
Jess came down to the store for a little bit today. Think she just wanted to get out of the house.
So starts our first week home without Cushing's, at least for the kids.

2009-05-17T20:07:00.000-05:00

Any sane person loves chocolate. - Bob Greene
Sat/Sun
May
16/17

This was a big weekend for the family. First, J&J & I got home about 12:30 a.m. Saturday. The rest of the day was pretty much a waste. Jess slept most of the day. Not sure what Justin did as he went home.

Yesterday morning there was a baby shower for my niece and her little boy. Last night my sister and BIL had a party. Today we celebrated my dad's 90th birthday. His birthday is a week from tomorrow. We opted to only attend Dad's party. I wasn't sure Jess was up to too much activity.

There was a good turnout. It was a lunch at the church. His church gets out about noon, so that worked really good. Only three people out of our entire family weren't there. That's pretty good. A lot of church members came and quite a few from the community. Dad's only living sibling, Arthur, was there and one of their nephews, Dave, from the Black Hills came down with his wife.

My sister, Myrna, decorated a cake for him. Had to get a picture of Dad and Vivian. Vivian and her family were our neighbors for years. Dad and her husband helped each other out with farming and chores, etc., when needed. Mom and Vivian were good friends. They saved each other many a trip to town by lending each other things or picking up something in town for the other one. Our families were in 4-H together. Vivian sold her farm and moved to town several years ago. Her husband had died many years earlier and it was just too hard for her on the farm by herself. Dad, Dave & Uncle Arthur Dad & us kids - Bob, Sue, Sam & me (in back) Elsie & Myrna are seated Justin was helping do dishes! Really couldn't pass up that shot, even though he kept his face hidden. Jess left early with one of my nieces and went with her to visit her in-laws for a bit. I think it was good for Jess to do something "normal." I had really hoped to get a photo of all the family that was there. But some had to start leaving early and it just didn't work out. Jess left before any of the group photos were taken. In fact I only got a couple of photos of her. I didn't post them because I wasn't sure she'd like them. She actually ate a little today, very little and very slowly. But it has stayed down. I think things are turning around for her, she has kept everything down for about 24 hours. Of course it isn't much, but it's a good start. I always thought it odd, that while she couldn't keep anything down, she never felt bad and wasn't weak or shaky. She also has stayed up longer today than she has since surgery.

After we got home from Dad's party we went to a graduation reception for a little bit. Shelby, the twins' older sister graduated from high school today.

2009-05-15T10:10:00.001-05:00

If one swallows a cup of chocolate only three hours after a copious lunch, everything will be perfectly digested and there will still be room for dinner. - Anthelme Brilllat-Savarin (1755-1826)
Friday
May 15

Almost packed to go home. Taxi arrives in one and a half hours. Jess is getting her packing done. Justin packed overnight. I thought he was just going to stay up until we left, but he laid down a couple of hours ago. Won't be fun waking him up!
We should get in to Denver about 6:00 tonight (that's 7:00 our time). It's only about a three hour drive home from there. We'll see how we feel when we get there and then decide whether we make it home tonight.
This is a big family weekend. There is a baby shower for my niece. And most will be meeting her little boy,Oliver, for the first time.
One of my sisters and BIL are throwing a party (which is something they rarely do). It's to celebrate several things - Ronnie just turned 60, he's one year cancer free and their 36th anniversary was a few days ago.
Sunday is a party for my dad's 90th birthday. His birthday is the 25th of this month.
His party is the one event I want to make sure we get to. I think the whole family will be there.
Well, we're out of here in a little bit. I hope the kids do okay on the trip home. And of course after we get home.

2009-05-14T20:34:00.002-05:00

"How Chocolate Can Be Good for Your Painting" is an essay on about.com that suggests painting a monochrome picture using only "chocolately" browns or a three-tone painting using the colors of white, milk and dark chocolate.
Thursday
May 14

noon
I did some of our laundry today. It seems easier to pack if most everythng is clean. I've been crocheting and getting a lot done on the baby blanket. The kids have both been sleeping.
We see Dr. Chiang today for our follow up appointment. I imagine it will go good.
later
Checkups were good. Jess got a stronger prescription for nausea. She should follow up with Andy and have her liver panel checked. Dr. C said he would be glad to talk to Andy if needed.
Justin is doing fine.
When we left Dr. C said that there was begining to be a parade of "us." I told him that it was because he was so good. And he is. I'm thinking we may see him again at some point for Bill. We'll have to see what his pit surgery brings first. Maybe with luck, he'll get a cure first time and his adrenals will quit overproducing aldosterone.
Leaving for home in the morning.

2009-05-13T20:19:00.001-05:00

It was at Prince Albert's Exposition in London in 1851 that Americans were first introduced to bonbons, chocolate creams, hand candies (called "boiled sweets") and caramels.
Wednesday
May 13

Tired, bored, not much to say tonight. Justin seems the same. Jess still vomits some and sleeps a lot. We met Terry, from the Cushing's board, and her daughter. It was nice to get out of the motel. They seem really nice.
Tomorrow we have our follow up with Dr. Chiang and then go home on Friday.

2009-05-12T20:55:00.005-05:00

In Mexico, the caliber of the cook is often judged by the volume of their chocolate foam. The foam represents the energy of the person who makes the drink.
Tuesday
May 12

When J&J were getting prepped for surgery last Wednesday morning they were right across the hall from each other. I just had to take photos of them from the others room. Jess' room was considerably smaller than Justin's. Here they are last Thursday night after we got back from the hospital.

The shirt that Jess has on is now a little baggie. Justin no longer had as much of the Cushie look. It disappeared around the time he started actively testing for Cushing's. I think there are degrees of highs and lows. I think he has been in an extended low for quite some time now but still is able to pull down highs. Son that must mean he is high for a "normal" person but is lower than what he had originally been.

Does that make sense to anyone but me?

Jess & I went to the hospital today for her to have labs drawn to compare to yesterdays. Dr. C wanted to make sure that her bilirubin wasn't on the rise. He called me late this afternoon (surprised me, I didn't expect to hear from him unless there was something wrong) and told me her labs looked good. Her white blood count was down and the numbers for her liver that were in the 400s yesterday were 99 today. He said all he can figure with her not having been able to keep anything down is that she had some kind of reaction to the anesthetic.

He asked how she was feeling, and said that was really the most important thing. I think she's doing pretty good, at least she acts like it. She's not really eating much yet, just some apple slices and orange juice and some kind of Italian ice when we were at the hospital. But everything is staying down. She has been taking the anti nausea medicine. When she first started taking it, it worried me because she said she no longer could vomit but it felt like she had too. Finally she burped and things were much better then.

I'm hoping things are getting on an even keel.

I've been reading. Finished three books since I've been here. I used to read a lot but haven't much in the last two to three years. While everyone was testing, feeling sick, etc. I just couldn't make myself care about what was happening in a book. I've also been playing on the computer and watching TV.

And I've been crocheting. Below is a baby afghan I'm making for a great niece of mine. I'm just a few months late with it. Then I need to get busy and get another one made for a great nephew. It's also a few months late. I'm using two strands of cotton crochet thread. I've made a few like this already. It makes a pretty stable blanket but I like the look much better than with yarn. And they are so easy to take care of, just throw in the washer and dryer. I have one I made for myself to use on the couch and I really like it.

I'm using a shell stitch and it makes it very pretty.

2009-05-11T20:16:00.001-05:00

The Hershey Kiss machine can wrap 550 pieces or more a minute.
Monday
May 11

Been a long day. Jess and I spent most of it back at the hospital. She had been keeping nothing down since late Thursday when we got home from their surgeries. What seemed really weird was that she felt good except for vomiting up anything she took in. I know her well enough to know that she really didn't feel sick. So it was a mystery to us.
I know that vomiting is one of the signs of adrenal insufficiency. If she would of seemed like she was actually sick I would of been very concerned. As it was it was just a delema. I finally settled it in my mind that I was waiting until today and would call Dr. Chiang's office for direction. That way I knew he would be in charge. I wasn't sure who would be if we went to the ER.
Turns out they have found nothing. She was dehydrated and had three IV bags of fluid. They did blood test, HIDA scan for her gall bladder, CT of the abdomen and x-rays. Her bilirubin was high but Dr. C also said she had an enlarged liver. We presume that is from the Cushing's but he is going to have her tested agin tomorrow just to make sure it's not on the rise.
He also gave her 25 mg of hydro just to be on the safe side. She also has a prescription for an anti nausea med.
I read and crocheted while I waited.
Lucky Justin got the whole room to himself all day. I never heard him complain about it!

2009-05-09T20:15:00.005-05:00

Dad is great! Give us the chocolate cake! - Bill Cosby
Sat/Sun
May 9/10

So, whoever put together the calender I'm getting my chocolate quotes from, wasn't real smart. Do they not know that today is Mother's Day? So why a quote about dad?
Things I've learned while J&J are recovering from BLAs:
1. Keep reading glasses by the medicine - if I'm called in the middle of the night, I don't have a pair hanging around my neck.
2. When the body is swollen from surgery, it's the whole body, not just the chest cavity - medic alert bracelets that fit before surgery don't fit anymore. But they should soon.
3. With three people living an one motel room there should be more seating than the bed, couch and office chair. The bar stools (with backs) don't really count as seating. No one could sit in them very long.
4. Recycling is very ingrained in my system. It drives me crazy to just throw things away while we are living here.
5. Waste also bothers me. For instance we could of bought a pint of mayo for $2.49 (or close) or a quart for $1.99. Well, I'm going for the cheapest which then leads to waste. It was also cheaper to buy a jar of 100 suppositories than to buy a jar of 50. Of course, we may really use those 100!
6. The game Chain rxn is fun and a great time killer.
I'm not sure I want this crash course in BLAs but I have to take it. Sort of scary to be in charge of someone elses life in this particular way.
For the kids, it seems that pit surgery was much easier. Of course in the end they didn't have a cure, so..........

2009-05-08T23:00:00.002-05:00

The way you eat an Oreo reveals your personality: If you eat one slowly and methodically, that means you're tidy and orderly to the point of being anal-retentive and irritating to others.
Friday
May 8

noon
Having nothing to do is always better in theory than in practice. I do have things to do, computer for entertainment, books and crocheting. But all are better when there is somethng waiting that you should be doing.
But I won't really complain. We need to be waiting here for the kids. Hopefully this is our last stop on the Cushing's journey. Both kids are sleeping, or at least appear to be. Sometimes I've thought Jess was asleep and she wasn't.
I may have to get something stronger for Justin to use besides just stool softeners. Pain killers really have an affect on him. I'm not sure about Jess, might need to question her about this. Justin opened his eyes for a bit and told me to wait to go get anything, said he might not need it.
I've done the dishes, messed around on the computer and read some. Must be about time to start with the crocheting. The projects I have really need to get done.
1:30 p.m.
Jess has been up and showered. She'll need to get up to take her hydro soon. She says we'll take a walk then. I guess I'll need to get Justin up for his hydro also. We'll see if he wants to walk with us. Doctors orders, walk a few times everyday.
I've had lunch, read some more. Still contemplating that crocheting.
later
Made a quick trip to Kmart, needed a few things. Seems to be working for Justin but not so much for Jess. If we ever get this to work, I'm sure she'll start feeling better. Pain killers can cause severe constipation (such a lovely subject) which causes severe pain, which then makes you want more pain killers. Vicious circle. When it makes you vomit, somethings got to give! Soon I hope.
Got busy watching movies - The Object of My Affection & Picture Perfect. That's more movies than I've watched in a long time. Started on my crocheting, talked to Bill and talked to my brother, Bob and talked to my boss, Ardath. Guess it's been raining every night since we left. Bill's rig hasn't moved yet. UGH

2009-05-07T21:13:00.001-05:00

The three best pleasures in life are scratching, sneezing and eating chocolate. - Anonymous
Thursday
May 7

J&J were discharged from the hospital this morning. We've settled back in to the hotel room and it feels much better than the hospital. I slept at the hospital last night, not very comfortable. There was a chair that pulled out into a bed. It was about as comfortable as those type can be. But it was better than having to sit up.

Both kids seem to be feeling pretty good. They were released on the dose of hydro that Dr. F prescribes. It seems that others have needed more. So far, so good. I'm sure they/we will recognize if they need more. Both are somewhat swollen. Justin doesn't think he is but he can't put on his medic alert bracelet, and it should be a little big on him. Jess' doesn't fit at the moment either. But you can tell just by looking that she is swollen. Yesterday after massive doses of hydro, her eyes looked like slits. Was almost hard to tell if she was awake or not.
Seems Justin is actually in more pain than I thought. Mostly his shoulder. Hope it doesn't last too long.
Everyone is mostly laying around, watching TV, reading or on the computer.
Hoping tomorrow their pain goes down some.

2009-05-06T21:12:00.000-05:00

Butter is an essential ingredient in baking. It enhances flavor, texture, moistness and even leavening. Grade AA unsalted butter is a must for your chocolate baked goods.
Wednesday
May 6

It's sorta been a long day. Taxi arrived at 5a.m. and we got to the hospital a few minutes later. Both surgeries went very well. We have photos taken "inside" during surgery. They really aren't bad but they aren't that great either so I'll refrain from posting them!

Everyone at the hospital is very nice. The kids did get put together in a double room. Jess is eating supper and Justin ate half the skin off his chicken and about half his mashed potatoes and went back to sleep. I have to remember that he's a few hours behind Jess and he also never slept last night. Both look great compared to what they looked like after their pituitary surgery last year. I think I understand why we have been told that the BLA is much easier than pit surgery, at least as far as the surgery goes. We'll have to see how everything else goes.

Saw an interesting fashion statement in the cafeteria (Jess says she's seen it before) - black eye shadow, yes black! Wow, looks like a major trauma occurred, especially when she also used about 1/4" of black shadow under her eyes! Interesting to say the least.

Oh, I'm tired, I'll tell more tomorrow.

2009-05-05T20:08:00.007-05:00

Chocolate Margarita
1 1/2 oz. tequila
1 oz. Godiva chocolate liquor
3/4 oz. cream
1 tbsp. chocolate syrup
2 oz. orange juice
Combine in a shaker and pour into a
margarita glass.
Tuesday
May 5

We met with Dr. Chiang this morning. He is just as nice as everyone has said he is. They each had a short appointment by themselves and then we all met together to go over the actual procedure. Since I didn't feel like Justin was going to need any defense (as in no doctor was going to question what was wrong with him) I didn't even go in to his appointment with him. Figured he was old enough to handle it on his own. I'm progressing!
I asked Dr. Chiang if I could get a photo of him and the kids together. After all, he's going to be the one putting an end to Cushing's for them. So here they are.
We went back to the room then because our appointment with the endocrinologist wasn't until late this afternoon. The kids sacked out. Jess, just for awhile.

This afternoon we met with the endo. Not quite what I was expecting. While he did eventually tell us he was just for after care (if needed) he seemed to doubt Justin's dx of Cushing's, questioned whether we were actually doing the right thing by having a BLA. Wondered if there wasn't meds available for them to take. I told him there wasn't anything that could be taken long term. He wanted to know if there might be in a few years. A few years?! Right, like I'm going to keep watching J&J suffer from Cushing's and get progressively worse. I don't think so. I thought that he truly doesn't understand Cushing's, especially cyclic. He was questioning their lows and normals. Thankfully he was nice about it, but I felt like we wasted time there. Not even sure that he has learned anything about Cushing's by studying the charts of all the patients that have come through his office in preparation for surgery with Dr. Chiang. Thankfully he doesn't have veto power!

We need to be up and at it early tomorrow. The taxi comes at 5 a.m. and Jess checks in at 5:30. While doing their pre op stuff over the phone today, I did ask if there was any chance of them being in the same room. The gal I was talking to said she would talk to admissions about that to make it easier. Hope that works out.

Tomorrow will be a long day with two surgeries to wait through.

2009-05-04T22:37:00.004-05:00

Black Bottom Pie is a rich pie with a layer of dark chocolate custard, topped with a layer of rum custard and garnished with whipped cream and chocolate shavings.
Monday
May 4

We made it to Milwaukee today and are settled into our room. We've eaten and bought groceries. Now we're just sitting around. Tomorrow we have doctors appointments.

When we went to get groceries we decided to eat out first. The rest of the meals will be in the room. We thought about eating here but it's closed. Love their sign though.

When Justin started digging through our stash it occurred to me that we have an awful lot of drugs with us.

Only a few are mine.

Tomorrow will be a long day. J&J each have two doctors appointments. But I hear that the endo appointment isn't bad. He doesn't try to tell the patient that they don't really have Cushing's

Update tomorrow.