Cushing's: More prevalent and hard to diagnose


New research has shown Cushing’s syndrome to have a substantially higher prevalence than previously thought

Diagnosing and treating Cushing’s syndrome is sometimes just as difficult as it was 70 years ago.

See the full article at survive the journey.....

Noninvasive Medical Technologies Helps Make Young Tennessee Woman's Wishes Come True


Due to surgery to remove an invasive pituitary tumor, Kristin Shumpert of Oak Ridge, TN, suffers from diabetes insipidus. Regulating thirst and urination becomes a difficult task with DI when controlled by vasopressin. Over medicated, one can become overhydrated and suffer water intoxication. Undermedicated, there is a danger of dehydration.

Kristin's mother read about a device developed by Noninvasive Medical Technologies, Inc.: "ZOE(TM), an FDA-approved noninvasive medical device that monitors a person's fluid status using bioimpedence." She contacted the company, and long-story-short, they were able to help Kristin.

Read more....,

Also posted at survive the journey

From last Spring: A repost...


I was talking online today with an old friend and Natalie's name came up.  It is so heart-wrenching when another Cushie dies :(

I still hate Cushing's.  It has taken away some of my best friends.

Read the rest of this post...

Top 5 things that pick me up when I’m down


OK fellow Cushies, let’s face it, we all have moments when we feel like we’re carrying the weight of the world on our shoulders or we’re faced with never ending obstacles. Just simply living with the after effects of Cushing’s is enough to make me what to stick my head in the sand and cry ’til my eyes bleed (although, I’m proud to say those moments are now far and few between).

To continue reading this post, please visit my battle with cushing's.

Cushie Depression


Reprinted with permission from the Message Boards.

Honeybee says:

I went through my cushie folder and found this, a letter from my journal..

I was going through my folder, and I found a entry in my journal that brought me to tears and reminded me just how difficult it is living with this disease. This was before I had even heard of Cushings. My depression was very very bad. One of the very 1st things that I noticed that was gone after surgey was my depression..all these feelings were due to

"Since I have nobody to talk to, I am going to write, I talk to myself all the time, this way seems a little less nuts. I have decided to not fight anymore, not throw back anymore pills. I'm not going to go threw anymore dr. appts. I honestly do not see the use.

I don't feel wanted in this life, but I don't feel like God wants me in his heaven either. I'm so tired of asking why and getting no answer..why am I here? I have no purpose, here or anywhere. I am a waste, a total burden. Everyone I have ever loved does not at all care whether I live or die. It will probably be weeks if not months before anyone knows I am gone.

I just want to be understood a little bit, sometimes. I really do have feelings, I'm not mean, I want hugs and want to give hugs just like everyone else. I am not destined to be happy, here or anywhere. I have been a better person for a long time now but still I am always paying for my mistakes, it will never end.

I cry every single day. Mostly because I'm so scared, and alone. Alone even though I am married. Ive lost everything. My mother, father AGAIN and for the last time, my sister again , and also for the last time. My best friend Tara, who turns out I never really knew, even though I was my most true self in everyway. She said "you will miss me before I ever miss you" She was right, and that kills me. Ive lost my best friend and husband Tim. I don't know how, I don't know exactly where or when, all I know is he left me mentally, I lost my husband, my lover, my everything in him. He's gone. My marriage is ruined, over. I lost my children, my teenager, who is the only person in this entire world who might miss me, probably just because Ive known her so long. She has her own problems. E is determined to kill me I think. T must hate me , I understand why, I'm sorry for the pain I must cause him. Most of all I have lost myself. I am a wreck. Most days I try to hide it, some days I'm sure it shows, and those are the days I am unpredictable, sometimes I am angry, and I come off as being a nag or a b**ch. Other days I am sad, well most days I am sad. I cry alot more than I'd like to admit. I try to not wear mascara too much, so that nobody will know I have no hope left.

I used to find things funny even when stuff was bad. Not anymore. I lost my looks. I am gross, my hair has been falling out and turning gray from stress I suspect. I am always broke out, from stress I suspect. I am so ugly. I don't even look in the mirror anymore, because I cry. I am so fat. I weigh 200 lbs, I am so disgusting. That alone makes me want to kill myself. I have lost my health, terrible blood pressure, worse than anyone I have ever heard of. I take so many pills. My heart is probably really f***ed up, my kidneys hurt now too. I won't lie and say I'm not sraced, because I am terrified, just because of the unknown. I just don't want to feel like this anymore. I'm so lonely. I feel so unwanted. I feel like T doesn't want me. He just feels bad for me. I feel like he doesn't want to be home with me. I feel lke he is doing bad things when he is out. I can't compete with his job. He says he loves me, but I can't see it anymore.

I'm pathetic, I have nowhere to go, nobody will help me, so once again I'm stuck. Dependent should be my middle name. So I'm going to change everything. He and everyone else is off the hook now. I won't b**ch or nag to T anymore about falling asleep on me, about all the stuff with his job. He always says "I don't go out with the guys like everyone else" which tells me he wants to. He can now. I won't say anything anymore. He can do anything he wants, he doesn't have to be held back by me anymore. I won't b**ch about how I don't feel good, I will keep all my pain and worry to myself. I'm not going to ask for anything anymore, it's all a me. I'm not going to take any of my pills, I just want to let God do what he needs to do with me. Things will be alot better for everyone to not have to deal with me. No more of "walking on eggshells". No more of my "issues".

Who did I wrong in my past life?? Must have been someone important because any and everything that could happen to a person has indeed happened to me. I just want to be happy for more than a few seconds. I wanted to love without fear and to be loved without judgement. Loyalty, understanding, contentment, faithfulness, truth, passion, fidelity..into eternity, all a dream for me, never my reality.

Cushing's: it's a family affair


This holiday season is an important milestone for me - and my family. Last year, at this time, I was under going testing to find out what the hell was making me so sick. Shortly after Thanksgiving, I learned that I had Cushing’s syndrome and had no idea of the struggles that lie ahead.

To continue reading this post, please visit my battle with cushings.

Mind body balance


I’ve been anxiously waiting two weeks to meet with my new endocrinologist. I had fears of him telling me that something else was wrong with me or that nothing was ever wrong with me. I know, I know - totally irrational. It’s hard not to feel that way when I spent so much time trying to explain or convince previous doctors that something was wrong with me.

Click here to continue reading.

CT Scan, 2


Sheesh!  I drank all the barium like a good little girl and got to the hospital in plenty of time.  I filled out all the extra paperwork as requested.

Finally got back to the CT scan room.  ESL person asks why I'm supposed to be doing this with contrast.  I told her why my doctor, my specialist wanted this.  I wasn't doing it for fun.

She said, well, I've never had contrast before for CT scans.  I said that my doctor wanted it this time.

She said I'd had 4 CT scans for kidney stones since 2006, never had contrast.  I said I'd had 1 scan for kidney stones.  After that, they were all related to my kidney cancer.

She asked if I had my BUN/creatinine results.  I said that I didn't have that test done recently.  She said that since I was having iodine contrast they would need to be sure my kidney was functioning.

I said that my doctor had not ordered iodine contrast.  He knew I was allergic, it wasn't needed for this test, just the barium.

So, she went to talk to the radiologist who called my doctor who knew what he was doing when he wrote the order in the first place. 

I went back out and waited during this conversation.

She finally came back and said that my doctor didn't want the iodine contrast dye, just the barium because I had only one kidney.  Hello!  That was what I said in the first place but I'm just a patient and how could I know.

So, too much time had passed since I finished my barium at 11:30AM and I had to drink more.

The CT scan lasted for about 10 minutes after all that.

Originally posted here:  CT Scan, 2

CT Scan Time


I'm sitting here drinking my berry smoothie barium, getting ready for a CT scan this afternoon of my abdomen and pelvis.

It's partly because of my kidney cancer that I'm having this and partly because I was having pain in my left side and now in my right, too.

My kidney doctor is concerned about the left side pain because of it's location near the colon.  I have a strong history of colon cancer.  Both parents and my aunt had it, twice each.

The right side pain is something newer, up in the ribcage area.  It started by feeling like my liver or some other organ was being pinched by my ribs when I bent over but now it seems to be a dull ache, there all the time.

Hopefully, they won't find anything but the yummy barium smoothie will help tell the tale!

Originally posted at CT Scan Time

Sleep, Tired, Nap, Sleep...


Seems like an endless cycle of either sleeping or being sleepy, napping or dozing off.  I miss the olden days when we used to have "project weekends" and get so much done, things built, rooms organized, going places, doing things, living.

My life now seems like it's a prelude to death.  I mostly can't stay awake for anything.

Yesterday I just slept most of the time.

I got up this morning and went to church - my kiddies sang at the first service, then another group rang at the second.  I left right after the bells and was home by 11:15AM.  And I napped until I had to leave for rehearsal at 4:45.  Home by 6:15 and - napped until dinner.  Ate and slept during TV. 

What a bore I must be.  Can't go anywhere, or do anything because I'm too tired. 

Read the rest of this post here.

My two cents worth


The authors say the biochemical evidence is "unremarkable". I disagree. To read more: Just how do you define "unremarkable? Geez...

Mirror, mirror...


Today I walked past a mirror and thought "Ugh". I usually think that when I see myself, but today it brought up memories of the day a doctor finally thought there might be something to my suspicions that my health problems were endocrine. I'd taken in a picture of me and my husband that was taken 5 years earlier, at our 2nd daughter's high school prom. The doctor, who hadn't known me for 5 years, looked at me in astonishment and said "You don't look anything like that. I wouldn't recognize you." I said "That's what I've been trying to tell you." That is how my Cushing's testing journey began. Two years later, I underwent transphenoidal pituitary surgery and had hopes of seeing my old self again in the mirror. That was nearly two years ago, so I've been on this rollercoaster for 4 years now. I still don't see my self in the mirror. I wonder if I will ever just accept as fact that that person is gone for good?

The Journey Begins...


Lifes HighwaysMy name is Steve Owens. My online friends call me sowens. I am a husband, father, son and brother. I have many friends both near and far. I am a veteran. I have a good life and only a few regrets. I am also a Cushing's survivor. Cushing's is a disease that strikes about 200 people a year in the US. In reality, it probably strikes many more who never know what it making them sick. I am fighting recurrent Cushing's, in my case a brain tumor, which has come back stronger than before.
It is my hope to write about this part of the journey to show how the process works. Since my surgery failed at MD Anderson and I have no cure, I have a few options left to try and get better. One of them is a bilateral adrenalectomy or BLA for short. My pathology shows I have corticotroph hyperplasia, which we are told is a rare form of Cushing’s. Another poke in the head probably won’t work and the BLA seems the best option.

Click here to read the entire story

We Are Not Alone: Learning to Live With Chronic Illness


MaryO'Note: I don't usually write, or post, book reviews, but I just love this book and I'm so glad to see it back in print. I've owned this before my Cushing's days, when I "just" had osteoarthritis - another disease I wasn't supposed to have, at least at my young age.  This book gave me such hope and inspiration when I felt I was so alone with my "stuff".  It still sits on my bedstand and I read it when I'm feeling down and helpless.

I've bought copies for everyone I know who might benefit from this - and that's practically everyone!  Because it's an older book, I got lots of copies at second hand book stores and gave them to all my friends.

So, I'm glad to see that it's listed on amazon again and anyone can get it brand new .

We Are Not Alone: Learning to Live With Chronic Illness by Sefra Kobrin Pitzele

chronic-illness Book Description
This is an essential layperson's guide to coping with chronic illness-- or the 50 million Americans who suffer from diseases such as arthritis, diabetes, and multiple sclerosis, and for the people who care for them.

With firsthand insights of one who has been there, Sefra Pitzele details every phase, from the frightening onset of disease through the process of readjustment to the successful adaptation to new norms. She addresses the issues that most concern the chronically ill: dealing with relationships; participating in sexual activities; helping your doctor help you; managing pain and depression; maintaining humor and dignity; more. She details adaptive living strategies from new ways to shop and cook to ingenious modifications at home and at work. There are nationwide listings of helpful organizations, support groups, products, and services. 44,000 copies in print.

About the Author
Sefra Korbin Pitzele is Secretary of the National Sjogren's Syndrome Association and serves on the Operations Committee of the Minnesota Chapter of the Lupus Foundation of America. She is co-founder, co-publisher, and Vice President of ADVANTAGE: A Magazine for People with Chronic Health Conditions. She is often the featured speaker at healthcare conferences and on radio and television shows.

Originally posted on Cushing's & Cancer

I just liked this Motto



It seems that there have been so many storms in my life, some major, some little summer showers.

I guess everyone has these storms, but it seems so much worse when it's happening to us.  I know I always have felt so alone with my various things, whether they be illnesses or anything else.

When I had Cushing's, there was no one else around who had ever heard of that, even in dogs.  It was something that "no one" got, therefore I couldn't have it, either.

When I got kidney cancer, I wasn't supposed to get that, either.  I was supposed to be  an older man of a different race who smoked and had polycystic kidneys.  According to my family history,  I was supposed to get colon cancer.  Maybe I still will.

I think the feeling that we are alone with whatever is a universal thing.  I see it on message boards all the time, people thinking that they are the only person to have whatever symptom.  But they aren't.  Lots of people seem to be dealing with all kinds of things.

Thanks to the Internet, more and more of us are able to find each other.  I've been able to find other Cushing's sufferers, some who have had Cushing's even longer than I have.  there are younger women with kidney cancer, too.

Thanks to the Internet - it's helping me, and lots of others, dance in the rain.

Originally posted here:  I just liked this Motto

Showing my Stripes


Showing my stripes
What a surprise! Shocked are you? HaHa. First impressions are very important and most people will decide if they love you or hate you in the first three minutes. Will it help that I display my zebra stripes right off?
Where did I get the feeling that you are comfortable with my naked belly? Doesn't matter! You saw it anyway and I must believe that you are as impressed as I am. Or not.



I haven't done a "personal" post in a while, and debated about doing this one. However, I think it's important to document what honestly goes on in the life of a person who deals with the repercussions of Cushing's on a daily basis.

As a quick recap, I had transsphenoidal endoscopic surgery to remove a pituitary adenoma almost 2 years ago. Prior to the surgery, I had a very Cushie body with numerous symptoms, and had most of those for a very long time (over 20 years). I was already suffering from hypothyroidism, multiple low hormones, and was probably growth hormone deficient, but I didn't test for that prior to surgery.

Since surgery, I have been diagnosed with adult growth hormone deficiency along with my hypothyroidism and my anti-TPO keep going up and up, indicating an auto-immune problem with my thyroid. I have very low levels of estradiol, LH, FSH, and testosterone. Also low are potassium, vitamin D, and ferritin. After surgery I had a problem with diabetes insipidus, but that gradually decreased. I still have days when I think I may have a bit of that, but not often.

Right after surgery, I made so little cortisol on my own that it was next to nil. ACTH was also under the testing limits. I was on 20 mg of cortef in the a.m. and 5 in the p.m as a replacement. Gradually, my levels have come up and a few months ago I was able to wean down to 5 mg a day. I was able to maintain that for the most part. Except....

Click here to read the rest...

Here am I


Isaiah 6:8
Then I heard the voice of the Lord saying,"Whom shall I send? And who will go for us?"And I said, "Here am I. Send me!"

We are the orphans. We are the zebra's in a world of horses. The ones who have a rare disease many have never heard of. We have no famous speakers to bring life to our voices. We have no sports stars to put a face on Cushing's. We have no pink ribbons. We have no simple tests to tell us if we have it. If no one cures us, our lives will be shortened at best and ended at worst.

Click here to read the entire story

Zebra Crossing


"If you hear hoofbeats, think horses, not zebras."

That statement baffles me. Should I be surprised to see a zebra? I'd LOVE to see a zebra!
I rode a pony for the 1st time when I began kindergarten and met the neighbor girls down the road. After school we would saddle their ponies and trail ride through the woods and cornfields. Horses were exciting to me. I dreamed of owning my own horse and living in the West as a cowboy. Oh to be a boy again!

Before I got sick( think ZEBRA), my wife had an opportunity to get a job caring for 3 horses belonging to a local woman who trained and showed warmbloods. Was I jealous. But after some time, the lady offered us an apartment and a shared job fulltime running the stable and property. 9 years, and 11 horses later we had to quit as my health was failing daily.
Why was I sick? In Spring of 2000 I missed 9 weeks of work. My primary doc ran a blood test and it came back positive for Epstein Barr virus( think HORSES).

While that was an obvious answer, there were other symptoms that he could not explain. Frustrating to me was his lack of interest in "why". Every 15 minute appointment was little more than telling me that my blood pressure was up, my fasting glucose was high, my cholesterol was off and my weight was too much.

But "why?" I was eating a light breakfast of Cheerios and milk, lunch was a plain lettuce salad with carrots and tomatoes and dinner was rarely more than chicken or a hamburger.

I know now "why" and "what", but it took alot of digging and research on my own. My pcp was content to increase the dosages of all 7 of the meds that he had prescribed to cover the symptoms.

One symptom that I had shown to him and had been a source of slight embarrassment to me was the purple racing stripes that had spread across my belly and thighs. He had no idea and other than a passing interest in the color, nothing. 15 minutes, in and out.

While sitting at my computer in my underwear( more often than you think ladies! LOL), I Googled "abdominal stretch marks". That was it, that one simple computer search and I had diagnosed my failing health, began a quest for a doctor who was interested in solving the rest of the puzzle, and treatment.

That was in July of 2005. I had pituitary surgery to remove 2 tiny tumors on Oct. 31, 2007. I am on only one prescribed med., down from 7 at surgery.

More baffling to me than the horses/zebra analogy is the lack of interest from doctors. You would think that most would love the chance to have an intriguing case to solve. Where are the Perry Masons? The Sherlock Holmes'?

Instead the easy way out is to prescribe meds to mask the symptoms and hope that the patient feels good enough to not come back for a while.

I missed it!


With all the hubbub over the weekend, and finding out yesterday morning that my best friend was in the hospital, I completely forgot that yesterday was the 21st anniversary of my pituitary surgery at NIH.

I even had a reminder on my calendar, a notice on the calendar section of the message boards, all kinds of places.  But it just slipped my mind.

Maybe this is a sign that I should somehow forget that I had Cushing's, that I should move on with my life as a "cured" Cushie.

My new life, in addition the the panhypopituitarism, involves kidney cancer and, for me anyway, that's a zebra disease.

I consider this a zebra disease because it's one that I shouldn't have had.

For one thing, I "should" have had colon cancer because both parents and an aunt had it twice each.  Of course, there's no guarantee that I won't get that, too.

Anyway, other "zebra" reasons are the risk factors for kidney cancer aka renal cell carcinoma.
The majority of kidney cancers are renal cell carcinomas. Risk factors for renal cell carcinoma include:

  • Age. Your risk of renal cell carcinoma increases as you age. Renal cell carcinoma occurs most commonly in people 60 and older.

I was younger than this.

  • Sex. Men are more likely to develop renal cell carcinoma than women are.

I am female

  • Smoking. Smokers have a greater risk of renal cell carcinoma than nonsmokers do. The risk increases the longer you smoke and decreases after you quit.

Not me!

  • Obesity. People who are obese have a higher risk of renal cell carcinoma than do people who are considered average weight.

A Cushing's gift

  • High blood pressure (hypertension). High blood pressure increases your risk of renal cell carcinoma, but it isn't clear why. Some research in animals has linked high blood pressure medications to an increased risk of kidney cancer, but studies in people have had conflicting results.

Never had this until the kidney cancer.  It went away immediately post-op.

  • Chemicals in your workplace. Workers who are exposed to certain chemicals on the job may have a higher risk of renal cell carcinoma. People who work with chemicals such as asbestos, cadmium and trichloroethylene may have an increased risk of kidney cancer.

What?  Me work?.

  • Treatment for kidney failure. People who receive long-term dialysis to treat chronic kidney failure have a greater risk of developing kidney cancer. People who have a kidney transplant and receive immunosuppressant drugs also are more likely to develop kidney cancer.

Nope.  Some sites also list polycystic  kidney disease.  I don't have that but half my husband's family does.  Hmmm - wonder if that's contagious

  • Von Hippel-Lindau disease. People with this inherited disorder are likely to develop several kinds of tumors, including, in some cases, renal cell carcinoma.

I've wondered about this but, you know, it's too "rare".

  • Hereditary papillary renal cell carcinoma. Having this inherited condition makes it more likely you'll develop one or more renal cell carcinomas.

Not that I know of. 

So, yesterday after I went with DH to his doctor, I went to see my new zebra doctor - my kidney surgeon - for pain I've been having.  Over the summer he said if I "wanted" my CT scan earlier than my next visit, just let him know.  I've been having pain in my abdomen and he is sending me for the CT I requested.  Plus, he suggested I call my gastroenterologist just in case there's something happening in my colon. 

Oh no!  What if I finally get the disease I always felt I was destined to get?

But, like Scarlett O'Hara, I'll think about that another day and head off with DH to see his new surgeon...

Originally posted here.

Losing Martha and other Cushies


This post was originally here:


Another Cushing's patient has died :( Over the years that I've been running the Cushing's sites, we have lost at least 16 Cushies - about 2 a year - that I know of. I wonder how many others there have been that I don't know about. Or they weren't even diagnosed yet at the time that they died.

Somehow, we have to get the system improved, to save the lives of more Cushies, known and unknown to us.

Even before I heard of the Internet, while I was waiting for surgery at NIH, a woman with Cushing's died. I would not have known except that there was an article about her in my college alumni magazine. She had been my age, lived in my city, graduated from my college with my major the same year as I did, was also a teacher, had my doctor... It could have been me. Thank goodness I didn't read about that until after my surgery.

The patients I have known about who died - 3 I have known very well. We had gotten to be good friends over the years. We managed to share good times, laughs, times of thoughtfulness, times of sadness, many phone calls and visits, adoptions of children, births of grandchildren, even a vacation! Just like "normal" friends. But we were bound by the bonds of Cushing's and we understood each other.

Even though I didn't know Martha who died last night, her death saddens me deeply. Too many deaths, too young.

Someday, I'd love to meet a Cushie in her 90's or older!

Martha's Story @ Survive the Journey


Stacey and Martha had been together for 11 years. During most of those years Martha struggled with IBS and acid reflux. About 6 years ago, they noticed her cheeks were getting "bigger" but her legs and arms were very thin. In fact, until the last 5 years she was a thin/normal woman. Stacey said she would squeeze Martha’s cheeks saying "look at those chipmunk cheeks".

Five years ago her health started dramatically changing. She had an ovarian cyst burst, then after problematic periods she had a fibroid tumor removed and a D&C performed. After that she never had her period. Her GP told her she was going through early menopause. Her strength was never the same. Stacey and Martha thought it was because she was pushing herself too hard with a long commute and getting up very early in the morning. To read the rest....