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.