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.

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.

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.

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?

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.

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.

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.

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.

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.

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

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.

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.

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.