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.