More background on our life with Cushing’s

Feb 14,2010

• • Marriage after Cushing's?

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

• February 15, 2010

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

  • XXX

• February 15, 2010

  Judy

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

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

• June 7, 2010

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

• June 7, 2010

  Judy

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

• June 8, 2010

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

• June 8, 2010

  Judy

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

• June 15, 2010

  Judy

  • Bill

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

• June 15, 2010

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

• June 15, 2010

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

• June 15, 2010

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

• November 5, 2010

  Hey Judy!

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

 

 

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

This looks like a good place to start.

Sometime late “09

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

Oct 31,2009

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

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

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

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

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

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

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

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

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

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

Jess modeling the pearls I gave her.

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

  

Jess & Tandy

With Virginia Trundle

 

Jess, Ashley & Alisha

Liz & Eden

Justin

Tina, Curt & Justin

Andrea, Jess & Andy

With Brenda Claassen

Justin

Jess, Judy & Justin

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

Dad (on left) with a buddy.

Dad

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

The Most Frightening Night of My Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    

 

I did a guest post for Robin.

    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.