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.

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.

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

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

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

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.

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.

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.

 

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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?

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.

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.     

♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫♫♫♫♪♫♪♫♪♫♪♫♪♫♪♫♪♫

“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.

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.

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.

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.

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.

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.

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.

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.

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.

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.