I’ve often had imaginary conversations with doctors concerning my family’s health. I know that we didn’t encounter as many unsupportive doctors as many Cushies have. But we met up with a few.

     The first thing I tell them (remember this is all in my head) is to believe me when I tell you my child is sick. He didn’t just wake up one morning and decide that he liked acting sick, laying on the couch and sleeping all day. Throw in failing a few classes and he’s really having fun.

    I know my kids and I know when they are sick. Please believe that they aren’t pulling the wool over my eyes. Speaking of eyes, they tell the whole story. A sick person has dead looking eyes.

    When my child says they don’t feel good enough to work anymore don’t ask them if they play video games. Of course they do. Playing video games can be mindless but at the same time get your mind off how bad you feel. I once asked a Cushie, who played a lot of video games at the time, what the attraction was. She told me “control.” That made perfect sense. Once he got really sick there was nothing in his life he could even pretend to control.

    When we have driven three hours each way for a doctor appointment don’t dismiss us because of one set of normal lab results. At the initial appointment you told us that when testing for Cushing’s there could be false positives and false negatives and no matter what the first set of test showed, we’d do more testing. So do as promised. Test some more. Don’t tell him to exercise and eat better. Oh yes, you also told him to work with a psychiatrist. Do you know how bad I wanted to reach over and slap that condescending smile off your face? No, I don’t imagine you do. You seemed to have no feeling for your patients. Oh, by the way, those false positives and false negatives you referred to? That’s really called Cyclic Cushing’s. Learn your trade.

    After examining my child don’t tell me there is nothing wrong. I know you saw the stretch marks, the buffalo hump. You asked about depression. You were told he couldn’t sleep well, etc., etc. Why did you dismiss us? You actually suggested that he liked getting out of school to go to the doctor. Oh sure. A few years later after both kids have been diagnosed and had two surgeries each to control Cushing’s, my daughter ends up in the local hospital. You happen to be her physician. Why did you wait until you were surrounded by med students to ask me if you’d missed anything with Justin (all those years ago). In front of all those students I couldn’t very well say “Everything.”

    In my mind I’ve told all of you a thing or two that I’ve learned about Cushing’s in the last few years. I had to learn to save my kids. You should of learned to save your patients. I even wrote one of you a letter after the kids got a dx. You wrote back that you would try harder with any other patients with the same symptoms. You didn’t. A friend took her son to you on my recommendation because I thought you meant what you said about trying harder. You blew her and her son off faster that you blew us off.

    And to one particular local nurse. When my daughter is in your care because she has been throwing up for weeks on end after having her adrenal glands removed to control Cushing’s, do not suggest to her that she is doing this to herself to lose weight. If you can’t read her chart and see what is going on with her, you come find me. She’s been through enough in the last few years without you suggesting that she is bulimic. Oh wait. I really did tell you that. I’m not sure you believed me but you did leave her alone.

    If I remember correctly, it is said that Cushing’s strikes 15 people per million. I think that number is very low. Only a diagnosed patient can be counted in the statistics and I see many Cushie looking people walking around.

    There is a saying in the Cushie community (sorry I don’t know who to attribute it to) that goes “Cushing’s isn’t rare, just rarely diagnosed.”

    For some reason many doctors can’t wrap their mind around the fact that someone has to have these “rare” diseases. Just because it’s considered rare doesn’t mean you don’t have it. Many doctors only run one or two tests and rule out Cushing’s. They don’t understand that many Cushies cycle and will have test results all over the board. Without correct testing one would be very lucky to get a diagnosis.

    I went with my maternal instincts. Justin was the first who became really sick with Cushing’s. It took me awhile to figure it out because quite a few of his symptoms mimicked Crohn’s. Since I have Crohn’s and it seems to run in families that made sense. But my GI ruled that out.

    I spent a lot of time searching on the internet. All his symptoms pointed towards Cushing’s. When I first discovered it I was sure that was what he had. I came across the best web site. It is http://www.cushie.info/. I felt like I’d found a home when I got there. The forums there literally saved my family. Only with the shared knowledge of so many could I of found the right doctor, who believes people can actually have Cushing’s and is willing to go the distance while testing for Cushing’s. It was also from other patients that I found the surgeons that would do all our procedures and surgeries.

    Before making the decision to take Justin and Jess (we had yet to figure out the Bill also had Cushing’s) to Dr. Friedman in Los Angeles I took Justin to local doctors and a few in Denver which is about three hours away. All but one of these doctors pretty much dismissed us. There was one PA who stuck with us but he admitted that he was out of his league, although he had no doubt that Justin was sick. One suggested that he liked getting out of school for appointments. Sure. Every teenage boy does that. Diet and exercise were suggested by several doctors. Then came the specialist in Denver who added “work well with a psychiatrist.” It wasn’t much after that that I made the decision to travel across the country to get help. By the time I was ready to make the appointment I’d decided that Jess was also showing symptoms.

    I think that by the time most patients make the decision to travel across the country to get to a specialist they know for sure, although doubts creep in sometimes, that they have Cushing’s. They just need a doctor for confirmation.

    There are just so many people walking around with Cushing’s symptoms and have no idea. They’ve been to doctors for so many different problems and it’s never been put together that there is one underlying cause. I can see how a family practitioner might miss it, but an endocrinologist? They should all be more educated in this area.

   

   Before starting this post, I must say that every Cushie is different so my experience may be totally unlike the experience of someone else living with a Cushie.

    While Cushing’s has many (bad) physical symptoms I have always thought, as a bystander, that the mental aspects of the disease must be much worse to live with. Actually, I’m not sure that bystander is really the right word to use. While I wasn’t a Cushie I was probably much more than a bystander as I got drawn into their lives.

    I got to where I could recognize a shift in mood almost as fast as it was happening with one of them. I learned that as I felt, literally, the change coming over them, the best thing I could do was totally ignore them unless asked a direct question. I’m pretty sure they were going into a high and it was as if the very air in the room was charged.

    Another usually let me know exactly what I was doing wrong when they were in a high. And everything in the past that I’d also done wrong. It was a little harder to predict these highs. They could come on in the middle of a normal conversation. One minute you’re discussing every day events and a split second later you’re listening to a rant. A very loud rant. I finally learned that the best thing to do was to just listen and say nothing. Walking out of the room was not an option as that usually prolonged the rant.

     One had definite food cravings when in a high. I could identify with that as I used to take massive amounts of prednisone for my Crohn’s. Prednisone is a steroid as is  the cortisol produced by the body. Cushing’s is caused by an excess of cortisol. I was told that prednisone would give me the munchies. What I had was so far beyond the munchies. I would sometimes find myself in the kitchen late at night frying frozen meat, quite often in tears, because I felt like I might die if I didn’t get to eat. But what I found really odd was that I craved chips and salsa. I didn’t even like salsa at the time. Yet, I found myself buying and eating it. Really the chips were just a carrier for the salsa.

     So when one family member started having cravings for nachos, sometimes at very odd hours, I understood. While I did understand, it was also sort of a pain as I felt compelled to go to the store and buy the chips and nacho cheese. Quite often these cravings came late at night. Ugh. Go ahead and tell me that you would of just ignored it and made them eat something else. It would mean that you had never experienced these types of cravings yourself. Also, it’s hard to ignore someone in tears because they need a certain food to eat.

    Yeah, Cushing’s does a number on the mind.

    One family member was pretty quiet and unless you were trying to wake them up they pretty much stayed by themselves. Waking them up was something else, something very unpleasant. It didn’t matter if they’d slept four or fourteen hours, they were never rested and so very hard to wake up.

    This family member kept me on edge for months on end as they were the one that experienced hallucinations and was suicidal for a period.  That’s a time I try not to think of too often, it was rough for everyone.

    One seemed to want to hibernate in the basement while one wanted to be right with me at all times while the third just wanted to be out of the house as much as possible. We were such a happy family during this period. HA! It eventually seemed normal for us.

    One I would quite often find sleeping under a computer desk in the morning with pillows in front of them. I never knew if the pillows were to keep them in or keep something else out. Or maybe small spaces made them feel more secure. I’ll never know.

    Meal time got to be a chore. It seems that everyone expected a meal to be fixed but it should meet their cravings at the moment. Except for the nachos, cravings seemed to change frequently. And of course no one ever wanted the same thing. Meal times were such fun. Read the sarcasm there.

    I did my best to keep everyone happy although I’m not sure why because I so seldom succeeded I wasn’t sure it was worth the effort. I suppose I thought that with so much wrong in their lives I should do what I could to make things better for them. Unless you’ve been in my position please don’t judge. You have no idea what you would do to try to keep peace in your home. Before Cushing’s reigned in our house I never bothered to try to keep everyone happy, that’s not how the world works. But Cushing’s messes with the mind so much that often a patient can be somewhat irrational & it’s easier to just go along and keep them happy. In their state of mind there were no lessons to be learned by ignoring their wants.

    Somewhere in the years of Cushing’s I felt like I lost myself. If it didn’t pertain to Cushing’s and getting my family better I had very little interest in it. I might force myself to do a few things non-Cushie but I didn’t really enjoy it.

    Today, April 8, has been named Cushing’s Awareness Day in honor of Harvey Cushing’s birthday. It seems like a good day to talk about symptoms.

Above is a diagram of a Cushing’s patient. From what I understand in talking with a lot of Cushies, is that many doctors believe that this is what a Cushing’s patient will look like. They don’t understand that these are symptoms that a patient may have. The diagram also can’t show the aches, pains & mental symptoms.

    Having three Cushies in my family showed me that symptoms can vary widely from patient to patient. I’ll make a list of symptoms (if I can remember them all) that my family had but won’t say who had what symptoms.

One had very thin legs, two didn’t

Extreme rage

Reversed sleep pattern

GI problems

Weight gain

Red cheeks

High blood pressure

Hallucinations

Suicidal

Depression

Self mutilation

Extreme hunger when cortisol levels were high

No appetite when cortisol levels were low

Heartburn

Excess hair growth

Hair changed from straight to curly

Body odor that could not be washed away

Alcohol breath (when none had been drank)

Vision problems

Irritability

Memory loss

Lack of concentration

Inability to solve problems

Stretch marks-stomach, arms, legs, shoulders

Moon face

Back aches

Muscle aches

Lost strength

I know there are more symptoms that I just can’t think of now. Tomorrow I’ll talk about what it was like to live with these patients.

 

 

 

 

    When Justin, Jess & Bill were testing for Cushing’s I got to the point that I felt like Pavlov’s dog. Except I didn’t salivate, I was filled with dread.

    This is something that is hard to admit publicly as a mother but I got to where seeing Justin’s name appear on the caller ID of my phone filled me with dread. I wanted to ignore the call but knew that if he didn’t get a hold of me whatever the problem was (and he usually had a problem if he was calling) it could get worse real fast if I didn’t help him figure out the problem.

    I blame the memory problems that Cushing’s caused, for many of his problems. It seemed that a frequent problem was locking keys in his car. Sometimes with the car running. I tried to keep spare keys for his car at my house because it seemed he quite often needed one. It seems like such a simple thing, not locking the car door until the keys are in your hand. I think the fact that he so often locked keys in cars attests to how bad his memory and concentration was.

    Flat tires, sickness, fights with a girl friend, needing money, etc., etc. There were just a lot of problems all requiring my attention, or so he thought. I usually responded to the problem and either helped him figure it out or just fixed whatever needed taken care of. I always worried that some day the problems would be bigger.

    I can happily say that once he recovered from his BLA & Cushing’s his problems that he comes to me with are few. I think it’s easier to keep your life on track when you feel good.

    The sound of the fax ringing at work also filled me with dread. In fact, it was the bottom dropping out of my stomach dread, followed immediately by a pounding heart & shortness of breath.

    All of the results of the family’s cortisol saliva tests and UFCs (urinary free cortisol) were faxed to me at work. The results of these tests were crucial for a dx. While a part of me couldn’t wait to see the test results another part of me could barely make my feet move to walk into the office to pull the results out of the fax machine.

    I’m not sure how long after everyone was done testing that this would of gone on. The fax machine broke when the store was moving to a new location and I never had to hear it ring again.

    Results for midnight cortisol blood draws were picked up at the local hospital. I was filled with the same sense of dread as I walked into the hospital and then as I stood at the counter in the records department and waited for the results to be handed over. I couldn’t wait to have those test results in my hand. Once my hand held the papers I dreaded looking.

     I’m so glad those days are over.

     The first time that I suspected that my daughter, Jess had Cushing’s I went outside and sat on the back step and cried. Then I called my older brother and cried some more. Then I put it to the back of my mind for a week or two until I felt better able to deal with it.  

   I had decided that I needed to keep a photographic record of Justin’s Cushing’s (I presumed) symptoms. One night he let me take photos of his stretch marks, which are a symptom of Cushing’s. They seemed to come and go, get darker and lighter, so I thought I’d record them. I also wanted to take photos of his buffalo hump, which is another symptom of Cushing’s. His wasn’t a *normal* buffalo hump. His was terribly slumped shoulders. I did see photos like that on a Cushing’s web site. It seemed I was always walking up to him and sticking my finger in his back to get him to stand up straight before I knew that he couldn’t really control the slump of his shoulders.

   So, anyway, I was taking pictures of Justin’s hump and decided I should take pictures across the back of the neck of a “normal” person. I called Jess into the bathroom and asked her if she’d take off her tee shirt and I’d take photos of the back of her neck. After taking a couple of photos I looked at the screen on the back of the camera and it seemed like my heart stopped. There on the back of Jess’ neck was the most perfect little buffalo hump.

   It’s surprising how fast one’s mind can make connections. I instantly remembered how she had started getting a lot of excess hair, she had gained quite a bit of weight, once, just once, she’d told me about not being able to fall asleep until the wee hours of the morning. A reversed sleep pattern is fairly common in Cushing’s patients. Within about ten seconds of seeing the image of her hump on the camera screen my intuition told me that she was also dealing with Cushing’s.

   I already felt like I wasn’t dealing with Justin’s illness very well. Now there were two? Shit. How would I ever manage that? So, like I said before I went and sat outside and cried then I ignored it for a while. A week or so later I picked Jess up after school and took her to Sonic. As we sat there with our treats I got up enough nerve to tell her that I thought she also had Cushing’s. She took it better than I expected. I think she was a bit relieved because it would explain the things going on with her body.

I already knew that Justin had Cushing’ I just didn’t have confirmation. I had made the decision to take him to see Dr. Friedman in Los Angeles but hadn’t set up the appointment yet. When I was able to set up the appointment I made it a double. No, it wasn’t two for the price of one! That appointment was the beginning of many double appointments with the kids.

     Hindsight really is 20/20. Looking back there were so many signs of the kids, especially Justin, having Cushing’s when they were very young. But I had no idea I should be paying attention to what seemed like such small details.

     When Justin was very small he really didn’t like to be held very much. Even to be fed he preferred that I lay him down and hold the bottle to his mouth. Not always but quite a bit of the time. I remember thinking that it should of hurt my feelings that he didn’t want me to hold him but it didn’t. He liked being around me but wasn’t always crazy about being held. I now wonder if it irritated his skin in some way. He also had GI troubles from a young age (which disappeared with his Cushing’s a few years ago) and it may of been uncomfortable sometimes to be held. I’ll never know for sure.

    Then one day when Justin was just learning to walk, so he was around nine or ten months old, he came over to where I was sitting and started to crawl into my lap. I later felt bad that instead of immediately picking him up, I just stared at him. He never asked to be picked up it really surprised me.

   Jess & Justin both went through spells of what I thought were pretty strange eating habits when they were just toddlers or younger. There would be periods of barely eating anything for many meals then it would seem like they could eat anything I would let them for several days. Neither of these phases would last all that long but they were something I noticed and wondered about. Knowing what I know now, I’m pretty sure they were already having Cushing’s cycles.

   Both also had odd growth spurts. I knew their growth spurts weren’t like my nieces’ or nephew’s had been but still it didn’t seem that odd. J&J both had a tendency to grow out and stay there for awhile. Then after a few months or so they’d grow up to match. Did that make sense? It was a little like, chubby, thin, chubby, thin, etc. Actually, their chubby wasn’t that chubby. Both were skinny little things until Cushing’s got its hooks in them.

    Justin was about 10 or so when he suddenly gained a lot of weight. And I do mean a lot. It was rather disturbing because nothing seemed to have changed with him except his weight. Well, that and he always seemed to have a red face. He also seemed to have GI issues which had led me to believe that he probably had Crohn’s like me. When I talked to my GI about him it was suggested that I bring him down and for scopes. Nothing showed. But when he got rid of Cushing’s he also got rid of his GI issues.

    I do know if I ever have natural grandchildren I will keep an eye on them and at about the second sign of Cushing’s I’d have them to a doctor. I’m hoping for no natural grandchildren. Adopted would be fine with me.

     I’ve been neglecting my blog for the past many months and decided the best way to get back in the habit of posting is to do the Cushing’s Awareness Challenge which is 30 posts in 30 days to promote Cushing’s awareness during the month of April. April 8 is Cushing’s Awareness day in honor of Harvey Cushing’s birthday. Harvey Williams Cushing, M.D. (April 8, 1869 - October 7, 1939), was an American neurosurgeon and a pioneer of brain surgery, and the first to describe Cushing's syndrome. He is often called the "father of modern neurosurgery.

     Today I won’t go into a  lot of details about Cushing’s but will say that I believe it is very under diagnosed. I see people on a regular basis that I’m sure would test positive for Cushing’s with the right endocrinologist. I think that statistics say that Cushing’s is rare enough that only about 15 people per million have the disease. I think that number is very low but then statistics can only include people who actually have a diagnosis not the walking wounded still searching for answers.

     Our family had two children and their father with Cushing’s Disease. All three had pituitary surgery and also a BLA (bilateral adrenalectomy) to rid themselves of this disease. It was a journey of several years with a few stops and starts and a lot of heartache along the way.

     I started this blog many years ago hoping that it might help others with similar symptoms figure out what was wrong with them. It also served as a diary of sorts to help me keep track of our medical journey. Now, my older posts serve as a reminder of how much our life has improved in the last couple of years. Some posts are actually painful to go back and read and will leave me in tears. But I sometimes go back and read about the worst times just so I know that today I have much to be thankful for.

     I’m probably the most thankful for finding a great website – http://www.cushie.info/index.php. The information there along with the message boards literally saved my family. MaryO, founder, is also a Cushing’s patient. She is a very humble person and I honestly think she has no idea that she is truly saving lives with the website. I definitely credit her with my family’s health. I tip my hat to her.

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

JUSTIN

May 2006

August 2006

December 2006

May 2008 shortly after pituitary surgery

May 2009 right before BLA

December 2009

November 2010 about one & a half years post BLA

June 2011 two years plus post BLA

JESSICA

September 2005

 

September 2006

December 2006

May 2008 right before pituitary surgery

May 2008 five days after pituitary surgery

November 2008

May 2009 right before BLA

July 2009

December 2009

July 2010

November 2010 about one & a half years post BLA

June 2011 two years plus post BLA

 

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.