Saturday, December 27, 2008

Christmas is Over

We got through Christmas. It was pretty rough, but we got through. We thought that would be the hard part, but a therapist tells us that the hard part is still ahead of us...after the letdown from the holidays. At least we are prepared for it now.

On Christmas morning, imagine the surprise the girls got when they saw this:

They were all excited to see those bootprints on the hearth. We have a little secret about those prints, and maybe we will tell them one of these days. For now, I will let you all wonder. Let's just say their daddy was with us here in spirit.

Tuesday night my friend Mona called me crying. Her 28 yr old nephew had died, the result of a drug overdose. Another senseless tragedy in our little town.

I'm telling you, this is getting old.

I attended the funeral today and when I got up to leave, my legs would hardly hold me up. A few steps and I was ok, but it was weird. I also got a low cortisol headache and came home and took a nap. When I woke up, I went for 10 mg Cortef and in an hour the headache was gone. I think I should have guessed that I was low in cortisol the past few days, since I've had some digestive problems that go along with being AI. Anyway, I feel better now.

Oh - if things weren't hard enough, DH might be out of work again. We will find out Monday for sure. They are eliminating the second shift where he works, but he might get a job on days. We'll see. To be honest, I am not even really too upset over this development after what we've already been going through. I figure it will all work out one way or the other.

S and the girls moved out yesterday. The house is quiet again. We miss them already. And we worry about how reality will set in for our babies now that they are on their own as a family of three.

We had a major thaw with lots of dense fog today. The weather matched our mood! Tomorrow we are supposed to get a blizzard. I hope it settles down soon. I need to get outside and go snowshoeing. And we all really need some sunshine.

Do me a favor and vote for our own MaryO who is up for a Health Blogger award on If she wins this award, it will bring much needed attention to Cushing's. And she deserves it!

Wednesday, December 17, 2008

Today I Didn't Cry

Today was better. I was busy every minute. We went shopping with friends for the better part of the day, then rushed home so DH and the other guy could go to work and I could meet S and go eat with her and the girls before their Christmas program at school. They looked so pretty in their new velvet and satin dresses. On the way there, Gabby said "I have a surprise for you at the program, Mom!" and Bahley said "She's reading a poem!" and then it was revealed that apparently Gabby had announced it earlier, so it wasn't really a surprise. The program was precious and when Gab had read her poem and was heading back to her seat, Bahley looked at her, mouthed the words "good job!" and gave her a thumbs up. It was really sweet. (If you saw them argue and fuss at each other, you'd appreciate the good times, too!)
This was Bahley's first school program and I thought their dad should be here watching this with us. I teared up, but I didn't cry. It's getting easier to hold the tears back. But I am feeling angrier.
What a great loss.

Tuesday, December 16, 2008

Moving On, I Guess

Today was just blah. I got up early, in anticipation of a shopping trip with a girlfriend, but we scrapped that idea around 7:00 AM when it was light enough outside to see what all the noise was about. The wind was howling and the temperature dropped from 49 degrees last night to 16 this morning. Everything was a sheet of glare ice, and we decided shopping could wait. We will try it again tomorrow.

School was closed, so I got up and saw the girls, had 3 cups of coffee, then went back to bed around 10. I slept until 2 - mainly for lack of interest, I guess.

I'm achey, and wonder if my cortisol has gone low. I rarely take Cortef anymore, and didn't think it was warranted today. But if I notice more achiness tomorrow and the following days, I will break down and take some and usually that does me a world of good. But I hate taking it when it's not absolutely necessary. I look forward to the day when I'm not hauling a medicine cabinet around in my purse "just in case".

We've had a great shock and I got through it without Cortef, so I figure my pit and adrenals are back on track for the most part. When/if I ever have decent health insurance again, I will go get that checked out.

I'm hoping tomorrow is better, but moving on is hard.

Monday, December 15, 2008


My DH and I are walking around like zombies, trying to do all the things that need to be done, but we are both aching and sometimes when we are alone we look at each other and just start crying and saying "I can't believe he did this" to each other. My husband is taking this really hard, I worry about him. What we are going through is called heartache for a good reason. It really hurts our hearts.

Today was the younger of the 2 granddaughters' birthday party and the paternal grandparents were here. I talked to Bill's mom a lot about random things and kept thinking how can she deal with this? She seems the same as she always is. And our daughter is not grieving and that confuses and disturbs us. Is she still in shock? She will see a therapist this week and I wonder if she will fall apart then. I am afraid for when she falls apart, and yet I know she needs to grieve in order to move on with her life. I know everyone grieves differently, but my husband and I don't think her behavior is normal. Still, she did find him, and has undergone an extreme shock. Is the shock protecting her from her new reality?

I got the girls' Christmas gifts wrapped and under the tree tonight. I want them to wonder and dream about those pretty packages and not think about the great loss that has just occurred in their lives.

Not yet, anyway.

Friday, December 12, 2008

I've Been Tagged

Ok, time to lighten things up a little bit. Maybe it will lighten up my mood!

Christy and Jess tagged me, and the instructions are to write 8 random things about myself and then to tag 8 other bloggers. So here goes:

1. I grew up in New Harmony, IN, a town that was the site of a utopian experiment. It's a beautiful little town with a very rich history, and it was THE perfect place to grow up. Think Mayberry RFD with a bit more of a northern presentation.

2. I won third place in the Posey County Spelling Bee when I was in seventh grade. Still have the medal. I missed the word "edition", I thought they said "addition".

3. I have 4 children - 2 I gave birth to, and 2 that I was blessed with through marriage. At one point, we had 4 teenagers in the house! (I think I need another medal!)

4. When I was 15, the government essentially took away our home and 40 acres in order to put in a state park. (Eminent Domain.)

5. When my dad died in 1979, there was an auction set up by my stepmother. All of us kids had to buy family possessions at the auction, but I stole a couple of things. I should have stolen more.

6. I have lived in 8 states - Indiana, Illinois, Florida, Texas, Colorado, Wisconsin, Tennessee, and Michigan - had a bit of wanderlust in my soul before I had children.

7. I love a clean house, but am over being obsessed about it. Life's too short to spend all my time cleaning!

8. One of my ears is pierced 4 times, and the other has only one piercing. I love the odd and assymetrical.

Wednesday, December 10, 2008

Suicide and Loss

I'm writing this blog today to tell you about our son-in-law, Bill. Bill died last Monday by his own hand. We are coming out of the shock and going into grief, which includes sadness, guilt, and anger. Bill was married to my older bonus daughter, and they have been extremely happy together for about 10 years. They have 2 little girls that everyone adores. The girls are 5 and 8 years old, but will both have birthdays within the next month.

When our daughter met Bill, I will tell you honestly that we were not thrilled because she was too young for that kind of relationship. When she became pregnant with their first child right before graduation from high school, we were not happy grandparents-to-be. We sat at the graduation ceremony and cried because we felt she had really messed up. But then our little Gabby was born. She has red hair and brown eyes and really long black lashes, freckles and dimples! We didn't think God could make a prettier child and of course we fell in love with her the minute we saw her - and all was forgiven.

The night she was born, we were at the hospital with them and his mom and stepfather and other family members. After she was born, Bill came out and hugged his mom and he was crying. I loved him beginning with that minute. He was a good man, a good husband, a good father. He was good all the way around and DH and I came to feel that he was our son. He was an important part of our family, and we always said what a good husband our daughter was married to - we told everyone how great he was.

He had gone to culinary school and worked as a chef in different area restaurants, but never made a lot of money. When he lost his job, my husband was able to help get him hired in with the company we both worked for. People said he only got a job because of my DH, and that is probably true. But his work ethic and easy-going good attitude and humor soon won over our coworkers and nobody doubted that he was the hardest working guy in the press room. He always did more than what was asked of him, and he really enjoyed working there. He excelled at everything he attempted, both at work and at home. He really was a very special man.

My DH and I both lost our longtime jobs this past year. DH worked there 34 yrs and I worked there 16 yrs. We were maxed out on pay and benefits and the company is moving production to Brazil so they let us go. (God forbid the CEO miss out on his $3 million bonus this year.) It was hard on all of us. There is still resentment for how they treated my husband after all those years (by me). Bill had to go in there everyday, to a job he loved, but working for a company he was ticked off at. Two weeks ago, the company announced that they were closing the plant. We had tried to warn Bill that it was coming, but I really think he was in denial. Add to that a bit of marital problems, and Bill made a decision. He could not live like this anymore.

I went to his Facebook page and looked at his status reports over the past 2 weeks. There was nothing telling there, really. But knowing what I know now, I think I do see where the pain started for Bill.

The day before he died, he came to see us and cried and clung to us. He said "I love you" 3 times in 2 days, and I know that he did. He said "Thank you for everything you've ever done for me" that day, and though I thought that was an odd thing to say, I never dreamed that he was telling us goodbye. I'd been up till 3:30 on facebook chatting with him, and finally said I had to get to bed. We were meeting friends at the local watering hole the next day for lunch - did he want to join us? He only slept 2 hours that night. He came and had lunch with me, went back to work at 1, but was texting me by 1:30. He called me 3 times after lunch. At around 4:00, I walked into the kitchen to ask my husband a question and he had this look on his face. He sobbed out "Bill shot himself!" My brain could not even process that information. We know a few Bills and I think I said "Bill who?" before crying Not OUR Bill!!!! My husband and I stood in the kitchen clinging to one another and wailing NOOOOOOOOOOOO. Looking back, the whole thing is just surreal. The sheriff's dept called. We needed to come down to their house and get our granddaughters.

DH is a firefighter and paramedic and so we have a scanner. He'd actually heard the dispatcher call for EMS and says he sat there praying Please let it not be Bill, over and over until the phone rang.

Our family is devastated. Our daughter has moved in with the children and we are now trying to make things seem sort of "normal" for the children in a very bad situation. We downsized homes last year and so there's really not enough room, but she says she can never go back to their house, and nobody blames her. Her car can't navigate our private road, so there are logistics issues. And the kids don't quite understand how Daddy had this "accident". But we are all together, and I think that's good for all of us.

This blog is a tribute to a good man, a humble man, an exceptional man. If he could have seen what his death did to everyone who loved him, I know he would never have gone through with it. He had so many friends that some people told me they didn't come to the funeral only because there was just no place to park. The church was packed. Many shared good memories of him, and told what he meant to them. That was comforting. But he is still gone.

And so Christmas gets closer and we are not ready, and we are missing an important part of our family this year. We have traditions that involve him and now they are but a memory. How do we get through this?

Wednesday, November 12, 2008

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?

Thursday, October 30, 2008


Hallelujah gentle readers! DH got a job! After 10 months, we'd just about given up hope. Now maybe life can get back to normal, and I can work on getting healthy again.

Saturday, October 18, 2008

Exercise Proven Treatment for Fatty Liver in Diabetics

I found this article and thought it would be of interest to the Cushing's community, since so many suffer from fatty liver and diabetes. My new diet is in response to the way I've been feeling lately, as well as the 225 blood sugar reading I got 2 hours after dinner one day last week. I'm not diagnosed diabetic, but it runs rampant on my maternal side of the family. I figure I need to try to head it off at the pass.


Weekly bouts of moderate aerobic exercise on a bike or treadmill, or a brisk walk, combined with some weightlifting, may cut down levels of fat in the liver by up to 40 percent in people with type 2 diabetes, a study by physical fitness experts at Johns Hopkins shows.

According to researchers, who present their findings on September 18, 2008 at the annual meeting of the American Association of Cardiovascular and Pulmonary Rehabilitation, high liver fat levels are common among people with type 2 diabetes and contribute to heart disease risk.

The NIH-funded study’s lead investigator, exercise physiologist Kerry Stewart, Ed.D., says the rise in the number of people with nonalcoholic fatty liver, mostly due to obesity, signals “a dark trend” because the disease, also called hepatic steatosis, may lead to cirrhosis and subsequent liver failure and transplantation, even cancer, as well as increased risk of diabetes-related heart disease.

“People with type 2 diabetes have added reason to be active and to exercise, not just because it is good for their overall health, but also because our study results pinpoint a key benefit to trimming the fatty liver that complicates their illness and which could accelerate heart disease and liver failure,” says Stewart, a professor of medicine and director of clinical and research exercise physiology at the Johns Hopkins University School of Medicine and its Heart and Vascular Institute.

A majority of the quarter-million people who die each year from all kinds of diabetes do so as a result of some form of heart disease or stroke. And excess body fat is known to increase the likelihood of potentially life-threatening illness because the fat leads to more inflammation in the artery walls, high blood pressure and elevated blood cholesterol levels.

Stewart says the team’s study is believed to be the first to specifically demonstrate the beneficial role played by exercise in controlling hepatic fat levels in people with diabetes.

In the study, 77 diabetic men and women in Baltimore, Md., were divided into two groups.

For a six-month period, half of the study participants were put through a moderate program of sustained aerobic exercise consisting of 45-minute sessions three times a week. They could bicycle, run on a treadmill or take brisk walks. In addition, they lifted stacked weights for about 20 minutes, also three times a week, and not at a heavy-duty pace. The other half of the participants were asked to avoid any formal aerobic fitness or gym classes.

Special magnetic resonance imaging scans performed at the start and end of the study showed much lower levels of liver fat in the active group, while levels remained the same in the nonexercising group (at 5.6 percent and 8.5 percent, respectively). Physical fitness exams were also done.

Among the team’s other findings were better measures in general fitness and fatness among exercisers when compared to the nonexercising group. Averages for peak oxygen uptake levels during treadmill testing, or V02 levels, were greater by 13 percent (25.1 milliliters per kilogram per minute, compared to 22.2 milliliters per kilogram per minute), muscles were stronger by 7 percent (lifting 216.7 pounds, as opposed to 202.8 pounds for seven exercises tested), while percentages of body fat and body weight were each lower by 6 percent (35.5 percent versus 33.2 percent, and 98.5 pounds versus 92.2 pounds, respectively). Even waistlines shrunk on average by 2 inches (39 inches, compared to 41 inches).

“The benefits in improved fitness and fatness are clear, and physicians should really have all people with type 2 diabetes actively engaged in an exercise program,” says Stewart, who plans to further promote moderate exercise through direct talks with referring physicians and through his monthly health blog to the public while he amasses more evidence about the benefits of exercise in people with the disease. An estimated 14 million Americans have been diagnosed with this most common form of diabetes, in which the body cannot use its own life-sustaining insulin and eventually stops producing it.

Stewart says his team’s next steps are to analyze the long-term effect of moderate exercise on diabetes and heart disease, including any improvements in heart and blood vessel structure and function, insulin resistance and arterial inflammation.

The Hopkins study’s exercise program followed current physical fitness guidelines from the American College of Sports Medicine. Their latest research follows another study published in 2005 by the Johns Hopkins scientists, which showed that moderate exercise reduced by more than 20 percent the number of people who develop metabolic syndrome, a clustering of three or more risk factors for developing heart disease, diabetes and stroke. Risk factors include high blood pressure, elevated blood glucose levels, excess abdominal fat and abnormal cholesterol (Newswise).

Time for a Change - In My Diet

I've been away for awhile again. I lost my internet connection for 2 weeks and that was interesting - I lived through it with very little withdrawal, which was a surprise for me. But I did miss all my online friends. I'm on my 4th or 5th data card. Everytime Windows does a service pack, my connection bites the dust.

I'm struggling lately with weight loss. At first, right after my pituitary surgery, the weight came off quickly and easily. So of course there are questions. Am I really cured, or in remission from Cushing's, or whatever you want to call it? Who knows? I just can't sit around and worry about it, and I also can't actively test and investigate since my husband and I both lost our long-time jobs and good health insurance. We now have very expensive insurance that doesn't cover squat on pre-existing conditions for 6 months, and then there's a rather high deductible. So I'm sort of stuck for now and am not going to dwell on it as long as my life is half-way normal. And it is.
For now, anyway!

So my immediate plan is to stay on a low carb diet and see if that helps get the weight loss going again. If it doesn't, it will indicate that I'm dealing with another endocrine issue, whether pituitary or thyroid or whatever. So look for low carb blogs in my bloglist. Tonight I have added
so check it out. There's a lot of good information there.

So I've been low carbing for about 5 or 6 days now and have seen some changes. I lost 2 pounds in the first couple of days. But the biggest change that I've seen so far is that my stomach isn't upset all the time. It's early on in the diet, though, so I will keep you posted

Monday, September 22, 2008

A New Neighbor - and He Scares Me!

I haven't been around much lately, mainly because I am working on a project and just haven't had time. I hate writing here so sporadically, but it's that or nothing for me these days!

Many of you know that I live in a beautiful woodland. This is our dream location, we both love everything about the woods. (Except I am not fond of snakes!)If you notice the photo on my homepage, you can see what I am talking about. That is the lane that winds up to our driveway. It is just gorgeous here in northern Michigan.

But there are critters in those woods. We see deer and turkey and squirrels and chipmunks and flying squirrels and raccoons, and I'm pretty sure I saw a bear a few months back. DH heard coyotes a while back, and there are fox everywhere! It's part of the charm of the place. We are communing with nature! So here's the bug I found outside a few days ago. Anybody ever seen anything like it? It is sort of freaking me out, to be honest. Do we have some alien bug culture here, or what?!

I hope you can see it, that's as big as I could get the picture. So I am asking for your help. What is this fascinating new inhabitant of our peaceful woods?

Friday, September 12, 2008


This study caught my attention. It is, in itself, quite interesting. But the thing that got me was that they did this and measured these subjects' cortisol levels several times throughout the course of the interview, once beforehand, and then at 30 minute intervals. And it occurred to me: Why do sick people have to beg to get cortisol tests to check for Cushing's?!

COLUMBUS, Ohio -- Researchers here have made a surprising new discovery: They've spent the last decade examining how stressful situations can alter the levels of certain hormones in the blood, weakening the immune system and increasing a person's vulnerability to disease.

But for some people in situations typically considered stress-free -- perhaps even pleasant -- the levels of one hormone, cortisol, may even rise. Scientists have long believed that cortisol levels increase in times of stress and decrease as the stress is eased. The new finding is puzzling researchers but also pointing them to an entirely new area for future research.

The work was described August 4 by Janice Kiecolt-Glaser, professor of psychiatry and psychology at Ohio State University, at the annual meeting of the American Psychological Association in Washington, D.C.

The new work stems from a series of experiments done more than a decade ago and intended to look for physiologic changes
caused by stressful situations. A group of about 90 newlywed couples took part in the study at Ohio State's Clinical Research Center. The couples completed questionnaires and then were asked to discuss several areas of disagreement regarding their marriage.

Blood samples were taken from each subject at the beginning of the session and at 30-minute intervals until they were discharged. When researchers analyzed the data, they found changes in hormones and other bloodstream components that could indicate a weakening of the immune status.

Today's findings, however, arise from a new analysis of data from blood samples taken immediately after those "conflict" discussions. Following a short "transition" period, the newlyweds had been asked to discuss the history of their relationships - how they met, what attracted them to each other, how did they decide to marry.

"For most people, not surprisingly," explained Kiecolt-Glaser, "this was a pretty positive interaction. And they were coming down off the earlier discussion which was usually seen as a negative emotional experience."

When Kiecolt-Glaser and colleagues Ronald Glaser, professor of molecular virology, immunology and medical genetics, and William Malarkey, professor of internal medicine, looked at the levels of cortisol in the blood however, they were surprised.

"In 75 percent of the subjects, the hormone levels had fallen just as we expected - 26 percent on average for the men and 35 percent for the women," Kiecolt-Glaser said. "But in 25 percent of them, cortisol levels stayed relatively the same or, in some cases, actually went up."

Normally, levels of cortisol drop after we wake in the morning. The experiments were done in midmornings and the newlyweds were "coming down" off the negative discussion, which should have forced cortisol levels lower.

But in one of every four people in the study, the cortisol levels failed to drop. In some people, the levels even rose. The findings were especially interesting when coupled with information from follow-up surveys of the participants. The researchers had tracked down each person to check their current marital status and to find out if the newlyweds were still together.

They found that the women whose cortisol levels rose during the discussions of their relationship history were twice as likely to have been divorced from their husbands. No similar relationship appeared among men whose levels had risen.

The study also looked at the exact word choice the couples used in describing their relationship. They used an instrument called the Linguistic Inquiry and Word Count program which lists both "positive" and "negative" words - 261 which describe optimism, energy and positive feelings and 345 words suggesting anxiety, fear, sadness, depression and anger.

Cortisol levels for three-fourths of the men in the study dropped - on average 26 percent. They used significantly more words considered "positive" than did their counterparts whose cortisol remained steady or even rose. There was no similar trend in positive word choice among women whose cortisol had dropped.

Women whose cortisol levels failed to drop, or even rose, however tended to use more negative words as they discussed their relationship history. "What I think is happening here is that in some ways, cortisol levels may serve as a bellwether of what's going to happen," whether women's marriages would survive, Kiecolt-Glaser said.

The most important finding, she says however, is that this proves that "positive" interactions, along with their health implications, deserve as much study as "negative" interactions have garnered.

The National Institutes of Health supported the study.

Thursday, September 11, 2008

I Feel So Guilty

We went to Applebee's for dinner last night while on a trek to the "city" for my meds at Walmart. (BTW, I was able to get 3 months worth of generic Synthroid for $10!!! What a deal!)

Anyway, we were sitting there waiting for our meals, and an older lady was walking with 2 little boys holding her hands past our table. I looked at the little one, who was maybe 2 yrs old and at first I thought he was a little person or a handicapped child. But then I looked again. This baby was so obese he could barely walk. His belly was protruding. His cheeks were red and huge. I looked at my DH and said "That baby has Cushing's. Look." He, of course, has not studied our "kind" like I have. This was an obvious case. I thought I need to talk to them. The lady walked around the restaurant and sat far away from us - on the other side of the bar. I kept watching to see if any of them got up and moved around anymore. I thought I needed to tell them what is wrong with their child.

The group consisted of an older couple, a young couple, and 2 little boys. Everyone else sitting at that table was normal sized. I was going over in my head what I should say to them. Should I say "Does your child have Cushing's?" or "Have you ever heard of Cushing's?" or what? I didn't know what to do.

They got up and left. I didn't do or say anything. I feel so guilty! What if they don't know what is wrong with their precious little boy? I keep telling myself that of course they know. Any doctor who looked at him would know.

Wouldn't they?

Sunday, September 7, 2008

Doctors skimp on diet, exercise advice

I found this article today and it cracked me up. I mean, how many of us Cushing's patients can say our doctors never told us we were eating too much and not exercising enough? I wish they'd do a study on Cushing's patients and see how many got an endocrine work-up right away when they told their doctors they couldn't lose weight. But instead, we get this!

Doctors skimp on diet, exercise advice
By Melissa Evans, Staff Writer
Article Launched: 09/06/2008 09:56:59 PM PDT

New findings from one of the most comprehensive health surveys in the nation may shed light on one of the reasons obesity and diabetes are tough problems to solve - primary care physicians, the main gatekeepers of health information, aren't talking enough about the need for good nutrition and exercise.

Data from the California Health Interview Survey, an analysis of phone interviews from about 46,000 residents in the state, showed just 34 percent of adults said their doctors discussed exercise with them and 28 percent discussed nutrition.

The research "suggests that physician involvement may be a piece of the puzzle in obesity," said Sue Holtby, senior research scientist at the Public Health Institute, which conducted the survey along with the UCLA Center for Health Policy Research.

Physicians and nutritionists in the South Bay said they aren't surprised by the findings. Though knowledge about the dangers of obesity and its connection to poor diet and lack of exercise is improving, there is still not enough discussion taking place, said Dr. Lisa Santora, chief medical officer for the Beach Cities Health District.

"Physicians have so many competing demands in the office," she said. "They have more adults coming in with chronic illnesses, and their focus is on addressing patients' immediate needs. Preventative needs tend to get relegated to the back burner, especially when the patient is in and out in 15 minutes."

Most hospitals, including Torrance Memorial Medical Center, Kaiser Harbor City and Little Company of Mary, have nutrition programs and dieticians on staff, but can't control what is discussed in the privacy of patient rooms.
Little Company of Mary holds nutrition classes for the community, organized a series of community television segments on nutrition and hosts a community meeting once a month with an endocrinologist for people to learn about diabetes prevention, including nutrition and exercise.

Beach Cities Health District also holds numerous community programs and works closely with schools in Hermosa Beach, Redondo Beach and Manhattan Beach. One of the focuses of education has been improving healthful eating at home, with the hope that children will be the impetus for change.

Santora said one of the bright spots of the survey was the finding that, despite the dearth of discussion among adults, nearly three-quarters of adolescents said they discussed nutrition and exercise with their doctors.

"That is great to see," she said. "There has been so much education going into childhood obesity and the dangers of being overweight. It may be starting to have an impact."

The statewide findings, based on survey results from 2003 and 2005, also showed that:

Half of adults age 18 and older, and 14percent of teenagers age 12 to 17, are either overweight or obese.

One-third of adults said they got no moderate or vigorous exercise in the past week.

43 percent of teenagers and 28 percent of children age 2 to 11 ate at least one fast-food meal the previous day.

Smoking continued to decrease among adults, but increased among white male teenagers.

Findings from the most recent survey taken in 2007 will be released later this year or early 2009, UCLA officials said. The newest survey will include a wide range of health statistics broken down by county on obesity, nutrition, diabetes and lifestyle habits.

All I can say is Oh puleeze.

Monday, September 1, 2008

My Love/Hate Relationship with Steroids

I am over a year and a half post-op pituitary surgery for Cushing's. I had to take Cortef to replace my cortisol for nearly a year after surgery. I could not WAIT to get off the stuff. After all, patients like me have been suffering with an excess of cortisol for some time. It's the stuff that made us fat, depressed, achey, and red-faced, among other things. So it's probably understandable that we all want to get off of it asap! But the problem is, my adrenals aren't doing the job totally just yet. I think (hope) they will, but it's weeks like this one that make me wonder.

I've been really busy this past week. I drove over 1100 miles in 5 days, visiting with my children and grandchildren. I didn't get enough sleep during the week. I walked miles and miles, I didn't eat right, and I was busy every minute. The day after I returned home, my stepdaughters threw a party to celebrate our anniversary here at our place and so I had a million things to do to get ready for that, too. I was not feeling well the night of the party, and actually went to bed with a headache before all the guests were gone. Yesterday was the first downtime I've had for over a week and I could barely function. I had clean-up to do around here and was really having a hard time of it. It hit me yesterday that the pain I was experiencing virtually in every bone in my body could be signalling that I was too low in cortisol, so I took a little Cortef...very little, just 1.25 mg, thinking that might help. It didn't. I had a headache on top of hurting all over. So this morning when I got up (at NOON!!!) I took 5 mg. It is amazing how quickly that stuff works. Within an hour, my aching bones felt better, but I still felt very weak. So then I dug into my vat of meds and took some Florinef, too. Tonight I feel "normal". At least I feel what my version of normal is these days.

I wonder how long it will be before I can depend on my adrenals to do the job properly. I wonder how long before I no longer have to carry emergency meds or worry about keeping enough Cortef and Florinef on hand to treat myself during these low times.

I love my steroids. And I hate them, too. But right now I can't live without 'em.

Thursday, August 28, 2008

Visit with the Kids and Aftermath of Lightning

I've been away from home all week, visiting my kids. A girlfriend and I drove down to the Detroit area to see our daughters, and then my daughter and I drove down to Indiana to visit my son and his family. It has been a good visit, I've enjoyed seeing my kids and grandkids, but I am about ready to get back home. Tomorrow my friend will meet me back here at my daughter's, and we will head north. It will take around 4 hours to get there.

I'm not sure I've mentioned this, but my grandchildren are all brilliant and gorgeous. :)

The hub called and told me there are 2 more holes in the house that he just found. One had a metal lawnchair leaned up against it on the deck, and I'm not sure where the other one is. So that's 4 holes in the house now. They aren't huge holes, but they do illustrate the power of electricity mixed with lightning! Also, the phone is out and he is waiting for Verizon to show up today. And it looks like the fireplace blower is shot. Sounds like we will be having work done for a while to get things back in order. Tomorrow the insurance adjustor arrives, and Hub says that he does not sound very helpful or even very bright. Here's the conversation he had with the guy:

Adjustor: Did the electrician check out everything you say is not working?
Hub: No
Adjustor: Why not?
Hub: Well, he was sort of busy trying to restore power to the house all day.
Adjustor: Then how do you know things aren't working?
Hub: Because they don't work.

This should be interesting! Sorry I am going to miss most of the interaction tomorrow.

Saturday, August 23, 2008


I have to admit, the past few months I have not been a very good advocate for my fellow Cushing's sufferers. I don't have any excuse except that I am sick to death of Cushing's. I want it eradicated. I don't want people hurting and suffering, and for awhile I just couldn't stand to watch others going through it. It is a terrible, heartbreaking disease that destroys lives and relationships, as well as bodies and minds and self-esteem. It steals years from patients, as doctors hem and haw and let us suffer. It's just not right.

I've even found myself not wanting to get to know more Cushing's patients because I know what they are going through, and I just couldn't deal with more of the same thing. I know that is selfish, but I think it was really just self-preservation. But I am beyond that now, at least I hope so.

If I were to tell you of the people I know who have had dozens of high tests over a period of years who keep getting told to wait for surgery because "I'm just not sure", you would not believe it. If you get a high midnight serum test result, the doctor explains it away: You must have been stressed driving to the hospital at night. If that were true, why do we never have highs in the daytime due to driving to the hospital? It just doesn't make any sense. But do these doctors even know that cyclic Cushing's patients usually have low daytime levels and high nighttime levels? I am quite positive that they do not.

I have a friend who mainly gets highs on all her tests. Every time she gets one, the doctor tells her to try one more. If she should get a low result the doctor says See? You don't have it! But she gets more highs than lows and the doctor never will admit that she has it, and she will not send her to surgery. This woman is sick, and has gained 80 pounds. She is a beautiful woman without a moon face. But she was a size 2 in her former life, the one she lived without Cushing's. She was willowy then, and she has always had a slender face. She doesn't fit the picture most doctors think all Cushing's patients look like.

It's not fair! It's not right! They are making people suffer, and why? Because they were told in medical school that they will probably never see a case of Cushing's in their lifetime - that's how rare it is. My friends and I agree that they probably won't see a case in their lifetime, because they will not open their eyes, and they will not open their minds, and they do not read the research that says it's not as rare as they once were told.

I am angry about how I was treated when I was so sick. And I am not alone. I'm going to work at being a better advocate.

Lightning Struck Our House

Lightning struck our house this morning. I was getting ready to step outside to go to the bank and turned to look for the umbrella since it was pouring down rain. Then BOOM and a ball of fire and holy crapola!

We have 3 pines growing up through our deck and 2 were hit. Hub was on the laptop and got a little shock, but is ok, thank God. We looked outside when the rain slowed. There are 2 holes blown in the side of the house. And there were 2 dead birds lying on the deck. :(

We have no power. The electric company came and restored it from the main source, but an electrician has to come check things out before we can check to see what appliances might have been fried.

Oh, the fire department was here, too, looking for heat with a geothermal camera, and said it looked fine.

Sheesh! What an exciting day. I'm exhausted. I'm just glad the hub wasn't hurt, and that I didn't step outside when I planned to.

I guess this is the price you pay for living on a hill in the woods. The picture of the wooded lane at the top of the page is our lane, part of the beauty we get to enjoy here everyday.

But I'm still shook up!

Friday, August 22, 2008

My Cushing's Story

It has been a long time since I've done an update on my health after my pituitary surgery in January of 2007, and today just seemed like a good day to do it. I want to preface this by saying that it took about 12 years before a doctor actually listened to me and noticed the changes that I'd been pointing out to them all along. I had doubts thrown at me all the way through my Cushing's journey, right up till the day before surgery.

I'm not your typical Cushie, I guess. My face is slender compared to many patients. I'm short and used to weigh around 110 pounds for many years, then it crept up to 120 and I was still ok with that. Even 130 did not alarm me. I have what they used to call an hourglass figure and felt good. I was not obsessed with my weight, but tried to stay healthy with daily exercise and I ate a very healthy low fat/low sugar diet. When my weight was headed to 140, I started feeling a little desperate. I joined a gym and went every night after work. I'd walk on the treadmill for an hour and lift weights after that. I would come home exhausted. And I did not lose weight.
I asked my doctor at that time what was going on. I didn't have a history with a doctor because I only went to the doctor if I was sick, which was seldom. I was met with a smirk and "Well, you ARE getting older, you know!" It just didn't make sense to me, but I figured the doctor knew best. (I never think like that nowadays...they are all under my close supervision!)

My weight went up to 150. I didn't like it, but couldn't lose weight like I used to be able to. I went on every diet you can think of and would lose 9 pounds at the very most after months and months. Eventually I just gave up because nothing was happening. The weight was now concentrated right up under my bra. I looked pregnant.

In 2003, I broke my ankle and was confined to my house in the dead of winter for 6 weeks. During that time, I had my first panic attack. The strange thing was that they would hit every night around 9 or 10. I was having anxiety, trouble sleeping, weight gain, my hair was falling out. I was forgetting things and would sometimes forget what the subject was right in the middle of a conversation. I was starting to think that if this is what the forties are like, I was going to be in big trouble by the time I hit fifty.
Here's a list of things I was diagnosed with in a span of about 10 years:

Blocked biliary duct, 3 ERCP's and finally had my gallbladder out
Fibroid tumors along with premature menopause at age 39, hysterectomy
Cataracts at age 49, surgery
Carpal tunnel, surgery
Gout, nope, not gout...looks like gout on xray, but it's not
Degenerative disk disease of the cervical spine
Neuroma of both feet
PCOS (after having my ovaries out - is this possible?)
Lichen Planus that mysteriously disappeared
Hypermobile joints, but was never told what this could mean. Was told not to lock my knees when I stand.
Lung nodules
Consistently high SED rate - my doctor saying "Aren't you in pain?"
Cluster hormonal migraines
Sleep apnea (occurred before the weight gain)
Hirsutism - had to shave my chin at least twice a day!

I guarantee you there are things I've missed here. I just can't remember them all. I knew it was unlikely that one person would have so many things wrong without a systemic illness causing it. I kept looking for help, and I kept getting blown off. I know they thought I was a nut and I could say I don't blame them. But I DO blame them!!!!!!!!!

I began seeing a young female doctor, fresh out of medical school. She was nice and (SHOCK!!!) she actually listened to me. At first she also said "You are getting older" but one day I took pictures of myself in from 5 yrs earlier. She looked at them and then put them down and said "I don't even recognize you." I said "That's what I've been trying to tell you!" She agreed to do one 24 hour ufc. She told me Cushing's was very rare and she didn't think I had it, but we would check. I don't know which one of us was more surprised when it came back high.
She sent me to the only local endo. He did another 24 hour cortisol and some thyroid tests, checked Vit D and said "Your vitamin D is low. Your cortisol is normal. Here's a prescription for diet pills and an antidepressant. Come back and see me in one year." And with that, I was dismissed. He didn't seem to notice that my bp was high that day, my pulse rate was high, I was sweating like a pig, and he also didn't seem too worried about the scary palpitations I'd been dealing with for months. I thought I was dying, and this guy wouldn't help me!

By this time, my weight was 204 and still climbing. I quit weighing myself. It was just too disheartening. I was having trouble walking anywhere by this time because everything hurt. I stopped going shopping and I parked in the handicapped spot at work.

Around that time, I'd found the website and a kind woman called me at home and said Mary, listen, you had that high ufc for a reason. Why not travel to a Cushing's expert for help? So that's exactly what I did. I flew to LA a few months later and Dr. Ted Friedman tested me there and then let me come home and test some more. Within 8 months I had a diagnosis of cyclic, or intermittent, Cushing's Disease. The tumor spotted at Cedars was 5 mm and was wreaking havoc on my body. I wanted it OUT!!!

Two months later, I got rid of the little devil and my life changed that very day. It was like a cloud had lifted. I was crying tears of happiness and gratefulness daily for awhile, so thankful to be alive, and so thankful to feel somewhat like my old self again.

It's been 19 months since my surgery. I've lost 54 pounds, and the first 50 came off with little or no effort. Now I have to work at it. I walk 3 miles a day and am trying to restrict my carbs. I'm not depressed, don't have panic attacks or scary palpitations anymore. I sleep at night. My hair quit falling out of my head and the hair on my chin is almost all gone - not quite, though. The asthma has miraculously disappeared. The migraines I suffered with for over 12 years are GONE! I am like a new woman!!!

Now, that is not to say things are perfect because they are not. I've had a complication or two along the way, in particular a bout of SIADH that caused me to be hospitalized for 5 days. But I would say that life has improved dramatically for me in the past 19 months.

If you think you have Cushing's, find a doctor who will listen to you. I really believe that should be the first priority. And seeing a real Cushing's specialist will save you time and money in the long run. Don't hesitate to travel to see a specialist if you have to. Talk to other patients. They know more about Cushing's and the testing process than most endocrinologists because they have lived it. And last of all, believe in yourself and know that you are not a hypochondriac or crazy. You are sick, and you know your body better than anyone else. Listen to it!

I am a success story, according to my friends. I hope I stay this way. The recurrence rate is high for his disease and I no longer have health insurance. Getting Cushing's again is my worst nightmare. But I try not to think about that. I am just enjoying my new life.

Tuesday, August 19, 2008

I Fell in Love Again Today

I babysat all day today for the baby of a young woman who used to practically live at our house when she and my daughter were little kids. She calls me "Mom" so I am thinking it's ok if I am her baby's gramma.
So I was up early, not knowing what to expect from this new little person. She is 3 months old and her name is Emma. She was amazing, interacting with us, looking across the room and smiling when we smiled. She played with her toys (I guess she actually just chewed on them). I kissed her belly and nibbled on her toes and she laughed and cooed. God, I love that.

Babies make us fall in love. What is better than that?

Monday, August 18, 2008

Missing in Action

I've been missing for several days and I apologize. My laptop had to go into the shop again, and my pc is painfully slow, so I just didn't feel like dealing with it. So, in the meantime, I've been living my life and trying to pretend I've never heard of Cushing's, that I don't have limitations, and that so many people that I care about are not sick. It felt really good, I can't lie. I needed a reprieve for a bit, and I took it. I actually thought about going into hiding mode, never to return and never to again address the illness that has ruled my life for the past several years.

I've been walking every day. Every morning I get up and have my coffee and then go meet my friend and we walk 3 miles. We talk about everything on these walks....our husbands, our children, our prospective jobs and the heartache of losing our longtime jobs. (We did that together, too.) We check out the lake houses and claim the ones we want to buy when we win the lottery. (Mine is a very modest little house with a wrap around deck.) We make plans for the weekend. We plan menus. We huff and puff and discuss our health issues. She has terrible feet, has had two toes amputated. I have a painful mass in my calf. (Myxedema?) And we keep on trucking, keep on moving along, until we reach our destination. It is therapy. Physical AND emotional. I feel so much better when we are done, but some days it is really hard.

Summer's almost over here, you can feel it in the air. The thought of winter depresses me and I just want these days to continue. The future for us right now is scary. We both worry about losing our homes and not being able to pay the bills. But for an hour every morning we are solving all our problems, walking those 3 miles. We're enjoying the journey, not focusing on the destination.

Wednesday, August 6, 2008

Cushing's Messes with Your Mind!

Recently I was talking to a friend from the Cushing's boards ( and we were discussing how people without Cushing's don't understand what we are going through. Even the wonderful (but rare) doctors who help us don't seem to understand that we need to feel better as quickly as possible. Cushing's messes with your body, and everyone can see that. But more than that, Cushing's often messes with your mind in ways that you can't feel comfortable discussing with other people.

If your loved ones are not particularly supportive, then you might be accused of being a hypochondriac. Friends may tell you that you are just starting menopause and they know so-and-so, and she gained 100 pounds when she went through menopause. You will hear that you need to stop thinking about it, think positive, don't go on the internet because you are just making things worse. Take some herbs, go for a walk, get a hobby! None of these things help one iota in making us feel better.

My family was supportive. (My husband achieved sainthood in my eyes during this ordeal.) My friends tried to be supportive, but sometimes looked at me like I was a crazy wench speaking an unknown language. My one sister kept giving me diet advice and telling me nothing was wrong with me at first, but she got over that once I got some high test results and a visible tumor on MRI. Both my sisters were terribly worried about me and called me often to check on me....did I get any tests back?...were they high?....why don't they DO something to help you?! I have to admit that as much as I love my sisters, I often didn't answer my phone to go through all of that again. It was terribly stressful waiting to get those test results back and I just didn't want to talk to anyone. At work, I took an obscure route to my work area, kept my head down and worked, then took the same route out of the building once I was pretty sure everyone else had gone for the day. It was awful to be walking around in this body, sick and unrecognizable, and on top of all of that there was shame. I felt very ashamed of the way I looked. My mental state was not good. If it were not for the other Cushing's patients I got to know through the boards, I really don't think I would have gotten through it. They were the only ones who really understood what it was like, the only ones I knew didn't think I was a psych case.

Shortly before I finally got to surgery, I began to think of a gun my husband and I own for protection. I would see myself going to get this gun. I couldn't get it out of my mind for a few weeks. I never pictured myself shooting myself, but I did feel it was dangerous for me to have that gun around. I kept thinking I need to tell DH to hide the gun from me. I finally spoke to another friend who was suffering with Cushing's and she said "Mary, if you were going to do it, you wouldn't use a gun. I have enough drugs to kill an elephant here at my house and I imagine you do, too." And she was right, of course! I had plenty of drugs and never thought about taking all of them. Eventually I was able to put the gun out of my mind.

I'm telling you, Cushing's messes with your mind. Some are affected more mentally than physically, but I believe all are affected mentally to some degree. The moment I came out from under anesthesia after surgery, I felt that a black cloud had been lifted and the sun was shining again. What a relief! That is not to say my entire recovery was sunshine and rainbows, but it was still so much better than being sick and depressed and apathetic constantly. I felt normal again!

I wish doctors would 'get' this disease. I wish they would realize that they are contributing to our depression by disbelieving us and not helping us when we are so obviously sick. To be so weak and fatigued that you can barely brush your hair, and then to have a doctor telling you that you should be lifting weights....right after you've told him you can barely brush your hair....well, it is frustrating at the very least.

I still owe that doctor a letter.

Monday, August 4, 2008

Beauty and the Beast, Cushing's

Beauty has meant different things to different people through the ages. The plump Rubinesque models of the olden days were considered gorgeous in their day. Women who look like that today are met with looks of scorn and possible ridicule. That bitch Twiggy came along in the 60's and ruined it for all of us women who have curves. Now if we don't look like we are on Death's Door, we do not meet the modern definition of beautiful.

I have never been beautiful. But I used to be attractive. I was thin back then. I ate a low fat diet and walked 3 miles a day and felt really good. I could go into a store and buy a size 5 and it fit, no need to try it on. If I lost a few pounds, a 3 would fit. And for a little while, I could wear a 2. All through my 30's, life was good.

At the end of my 30' age 39, my periods stopped and I started gaining weight. My digestive system started going whacky. I thought something was wrong, but all my doctors said was Well, you ARE getting older..hehe! Yeah, real funny. That was the beginning of my Cushing's, I am quite sure. Doctors not only didn't help me, they more or less laughed about my "problem". Well, you are getting older lady, get used to it! It took nearly 12 years to figure out that I had cyclical Cushing's and to get the treatment that would help me feel like myself again. Don't get me wrong, I am not thin. But I've lost right around 54 pounds now and I can breathe again, and don't have panic attacks, ever since my pituitary surgery. I could go on and on....I can go shopping, I am not being a recluse, everything is better. Is it perfect? Did I regain the body I had at age 39? NO!!! (Damn it!) I am living with the aftermath of Cushing's and don't believe my physical appearance will ever be what it used to be. Cushing's ravaged my skin, it is not taut or fresh. There are broken capillaries and my muscles are still not back to what they used to be. I have hanging skin. Not pretty. When I look into the mirror, I do see a glimpse of my old self, but for a long time I did not recognize that creature looking back at me at all.

I always wanted to be beautiful. I had 2 older sisters I thought were beautiful and I wanted to be just like them. The funny thing is that I do look very much like them, but never realized it. But now I look at pictures and say Is that me or Pat? and nobody can tell the difference.

When I was about 45, I had cosmetic surgery. (My husband and my older sister were both opposed to this, by the way. I told them I was doing it so that I could feel better about myself and they didn't argue.) I had a lower eyelid lift, liposuction under my chin, and permanent filler put in the nasal-labial fold. I was happy with the eyelid lift and lipo, the filler has not met my expectations, but what's done is done. Looking back, I believe that the rapid aging I saw around that time was from my hormonal condition. I also believe this surgery delayed my diagnosis. I didn't "look" Cushie, so doctors didn't take me seriously. But again, what's done is done. No regrets!

Recently I've been having to work at losing weight again. It's a constant struggle. And now, I've started thinking about all the time I've spent pursuing beauty. I feel I've wasted years doing this. I am now a round peg and I want to fit into that square hole, and it's just not happening for me. And then I hear Oprah has recently had the same sort of thoughts and she said something that I know is true. She said "I am not my body." How simple that is!!! And how profound.
The thing is though - other people cannot see the real us. Our first impressions are made through visuals. And as much as we think we are not judgemental, we all are. If I see a man walking around with socks and flip-flops, I immediately think "Fudgie". Now, you'd have to live in northern Michigan to understand that reference, but I would almost bet that all of my neighbors would jump to that same conclusion.

What I am trying to say is that I really am not my body. You are not your body. We are spirits trapped inside the vessels we were given to live our lives. Some of the most beautiful people I know do not have beautiful vessels by society's standards. It's taken me over 50 years to realize all of this. I'd like to think that I won't obsess over my weight anymore after this realization.

But that's not likely. I still fix my hair, get manicures and care about what I wear. If all of this is not important, why do I still care?

Friday, August 1, 2008

I Miss my Mom

My mother gave birth to me when she was 44 years old. When I was about 5 years old, she became sick and was in and out of the hospital all the time. When I was nine, on a very hot day in July, she died. She had esophageal cancer, that metastasized to her lungs. She was in the hospital when it happened. They operated on her, believing that her cancer had been reduced by radiation therapy, and found that they were wrong once they got inside. I saw her on Tuesday. They let me visit her in the hospital, something I normally was not allowed to do since visitors had to be 12. She told me she was coming home on Thursday and not to worry. I cried my eyes out the last time I saw her, and I'm not sure why. I just loved her so much.

Thursday came with a frantic phone call to my dad from my older sister. Get to the hospital, Mom's not doing well! I remember his nasty mood that day. He had to drive 40 miles to the hospital, in city traffic, and he was not happy. He was more grouchy than usual that morning. He dropped me off to spend the day with my sister-in-law, along with my 14 year old sister. We lived far out in the country and had never been to a sitter, and staying with someone other than our parents was very unusual. My SIL was a jolly, care-free young woman with 3 kids that she'd load up and haul around all day long. She never stayed home, so we were running around with her that day. She took us to a little drive-in ice cream shop and we were waiting in the car with my niece and nephews when my cousin came up and said "I'm so sorry about Aunt Evie!" My SIL came back to the car and was chastising her....oh now, that's not true. Then we all looked up and saw my dad riding into town as a passenger in my brother's car. He was slumped over. Later my sister-in-law would say she knew it was true when she saw that.

We went home. It seemed like there were hundreds of people there. My mother had so many friends. She never worked outside the home, but she had cultivated so many friendships. (Looking back now, I don't understand how that was possible - where did she meet all these people?) Nobody actually told me what had happened, but I knew. Mom was dead, gone, just like that. My 19 year old sister did try to comfort me, and told me she would be my mom now. It wasn't the same. She didn't live with us (and I do not blame her for not moving home). But she did try.

July always brings these memories to me. My mother's death brought on the worst days of my life. After all these years, I have mostly forgotten those days in the interest of self-preservation. But I will never forget the day that changed my childhood forever.

It's been 44 years since that day. I decided a long time ago to let the pain go because hanging on to that hurt would never help anything. But in July, those memories always come back to haunt me and remind me of my mom that I love and miss so much.

Wednesday, July 30, 2008

I Want to GO Somewhere!

I want to take a trip. I'd hoped to go home to Indiana earlier this summer, but we couldn't make that happen. I would love a trip to the UP, but what will we do with our bratty little dog, Lacey? If we take her, she probably won't behave. If we take her to a kennel, she also probably won't behave, and I hate to just leave her with strangers. Oh, and we really can't afford it just now.
So I'm dreaming of running away for just a day or two. A friend told me about a party boat that takes off for 2 1/2 hours from a hotel in Traverse, and that sounds like fun. She said it has a Carribean feel to it. Ok, I really would rather go to the Carribean, but that is not going to happen anytime soon.
I need to make reservations on that party boat!

Tuesday, July 29, 2008

Where I Found the Information and Support I Needed

A blogging friend posted an old thread about something she was going through a few years back from the message boards, and it made me curious about my first post there. I revisit that scary time here with my very first post. Thank God for those message boards, the wonderful and very supportive people who frequent them, and Mary O'Connor who created and maintains them! They all helped me get past the fear and pursue answers about my "mystery illness".
This was posted almost 3 years ago, but it was months earlier that I'd registered on that site under another name:

Hi all. I've been lurking here for the past few weeks and thought I may as well get comfortable and introduce myself. I have had various health problems the past few years, to the point where I felt the doctors thought I was crazy, and to be honest, I was starting to think they might be right. They kept pushing the antidepressants, even when I assured them "my life is good, I am happy!". Anyway, for the past year I've had pain in my upper right abdomen and have seen various doctors for that, with all of them pretty much saying "huh!". One did order an abdominal ultrasound, but that came back fine. One felt he could feel my liver over a year ago (and another 20 pounds ago), but then he moved away. My current gp finally listened to me when I wrote a letter telling of my many health problems and the various things I've been diagnosed with. These include cataracts, neuromas in both feet, arthritis, rosacea, panic attacks, hirsutism, and I'm not even sure what all right now....lots of stuff, though, for someone in her late 40's. I also took in a picture of myself from 6 yrs ago that very plainly shows that I look nothing like the person I used to be. So she started out sending me to a rheumatologist, who said I don't have fibromyalgia, but have very flexible joints. Then she sent me to a gastroenterologist who I just knew was going to find my problem. Well, he scheduled me for an mri. The day before the test, I had my first panic attack since about a year ago. So, of course, I had a panic attack in the mri machine, when the time came for that. After rescheduling, I went and had it done, after taking 2 Ativans and covering my eyes. The mri did not find the cause of my digestive complaints, or the abdominal pain, but did find a pulmonary nodule on my lung. (Yes, I am freaking out over this, but trying to maintain some calm until I get further test results.) In the meantime, I talked my doctor into testing me for cortisol with a 24 hour urine test, and it came back with a score of 104.5 on a test with 75 as the high reference range. Last night I went for a CT scan of my chest. I live in a rather rural area of Michigan and the soonest I can see an endocrinologist is November 8th, and that's 5 weeks off. In the meantime, I am miserable, scared, crying, and no doubt a real pain in the patoot to all who love me. I need some support and this looks like the place to be. Thanks for letting me vent!

Monday, July 28, 2008


Lately I've been thinking a lot about how we perceive a situation and how it can be totally different from how another sees it. Or maybe our perception changes with time. I especially have been thinking about this in relation to how my husband and I lost our jobs.

DH worked at the same place for 34 years. He loved manufacturing and had done every job in the place. When the old company was sold out, and a new one came in 4 years ago, he was promoted to plant superintendant and was making more than twice as much money than he had been before. He liked the boss, and got along with everyone there, but he did not join the office clique that went to the bar a couple of times a week. He's a homebody, a good husband, and he came home to spend time with me. He never worried about his job, because he knew he was doing a good job. We'd both grown up believing that hard work brought great rewards.

On January 11th, a meeting was called with 10 employees. My husband and several of our good friends were called in. The boss was joking and making small talk, but when the door was closed he dropped a bomb on them: "Your jobs have been eliminated. Please gather your belongings and leave the premises. Do not speak to anyone on the way out. If you need to come back, you will need to make an appointment." And then the 10 people were escorted off the property as though they'd done something criminal. I worked there too, so when I went into one of the common rooms, my coworkers were buzzing..."What's going on?!" I didn't know what they were talking about and they explained that 3 of the women we'd worked with for years had come in the room crying and had left without saying anything to anyone. So when the plant meeting was called, I went in thinking they are going to tell me my friends were terminated. And oh, they did. But as an added surprise, my husband's name was also on that list. (Nice of them to consider that I was still adrenal insufficient, as they well knew. 20 mg Cortef necessary that day!)There were gasps and crying in the room. We'd all been blind-sided. One co-worker's son was let go. Another's mom was let go. Friends who'd worked there 20, 25 and 28 years were let go. Two were within months of retirement. And never, not once, did anyone say thank you for your years of hard work and faithful service.

Corporate restucturing. What bull. How interesting that people over 50, and anyone with a chronic health condition were terminated.

Right away people were calling us and saying they were so sorry and mentioning that it's funny, but so and so still works there and she is dumb as a rock and lazy. None of the (young cocky) boss' drinking buddies were let go. The week before, the comptroller resigned. He got a party with a cake. He'd worked there less than a year.

The injustice is what made me so angry. Still does.

So this was on a Friday and come Monday I had to go back in there. I worked there every day hating those people and what they'd done to my husband, who at 54 had worked in that place all his life, but was not yet old enough to retire. I worked there 3 months after he was let go, and then I was on the next list of who was terminated. (Wasn't quite as shocking this time around.) And so was my best friend who worked in the office and who the company had moved here just a year earlier. But what a relief for me. And how scary. How were we going to pay 2 mortgages? We needed a new roof and a new furnace. What would happen to us? It didn't help that it was winter in northern Michigan and depressing as can be, either. And the fact that Michigan is in a serious recession (some say depression) didn't bring us much hope, either. The severance we were able to draw was a blessing, though.

Fast forward 4 months. I was offered an opportunity to learn a new skill and be able to work from home eventually. I am learning to sew, and I am really loving it. I know I have a lot to learn, but I feel so fortunate because I am getting this chance to learn a skill without having to commute to a school 40 miles away. And I will be able to work from home, sub-contracting for a local company, with no bosses and no politics! YAY!
My husband has been promised a job with a government agency and is waiting to be called for his interview. The wages will be quite a bit less than what he was making before, but so will the stress. And the insurance will most likely be much, much better.

Now our old boss is telling his buddies about his new job since the plant is closing. There are about 30 people working hourly jobs there who have not been told that their jobs are being eliminated. Just a few months ago, they thought they were the lucky ones. They weren't counting on a dishonest company doing to them what they did to us.

So here the DH and I are, getting on with our lives. We are 6 months out from the nightmare and we have a new perspective. Who do you suppose are the lucky ones?

Friday, July 25, 2008

Five Painful Facts You Need to Know

I saw this article and was struck by how it can relate to Cushing's patients, and post-op patients who are going through the pain of steroid withdrawal.

Taken from, written by Robert Roy Britt, LiveScience Managing Editor

First off, let's set the record straight: Pain is normal. About 75 million U.S. residents endure chronic or recurrent pain. Migraines plague 25 million of us. One in six suffer arthritis.

The global pain industry peddles more than $50 billion in drugs a year. Yet for chronic pain sufferers, over-the-counter pills are typically little help, while morphine and other narcotics can be addictive sedatives.

An overview study published last month in the Journal of General Internal Medicine looked at multiple studies of pain and found "researchers don't yet know how to determine which [treatment] is best for individual patients." From studies of drugs to surgeries and alternative medicines, "We have found that there are huge gaps in our knowledge base," said Dr. Matthew J. Bair, assistant professor of medicine at the Indiana University School of Medicine.

So what is pain and why do so many suffer so long?

Pain is felt when electrical signals are sent from nerve endings to your brain, which in turn can release painkillers called endorphins and generate reactions that range from instant and physical to long-term and emotional. Beyond that, scientific understanding gets painfully fuzzy. Here's what's known:

1. Scientist don't understand pain

When you're in pain, you know it. But if scientists could fully grasp how pain works and why, they might be able to help you more. The American Academy of Pain Medicine defines pain as "an unpleasant sensation and emotional response to that sensation." Some pain is the result of an obvious injury. Other times, it is caused by damaged nerves that are not so easy to pinpoint. "Pain is complex and defies our ability to establish a clear definition," says Kathryn Weiner, director of the American Academy of Pain Management. "Pain is far more than neural transmission and sensory transduction. Pain is a complex mixture of emotions, culture, experience, spirit and sensation."

2. Chronic pain shrinks brains

If you have chronic pain, you know how demoralizing and debilitating it can be, physically and mentally. It can prevent you from doing things and make you irritable for reasons nobody else understands. But that's only half the story. People with chronic backaches have brains as much as 11 percent smaller than those of non-sufferers, scientists reported in 2004. They don't know why. "It is possible it's just the stress of having to live with the condition," said study leader A. Vania Apkarian of Northwestern University. "The neurons become overactive or tired of the activity."

3. Migraines and sex go together

It may not eliminate the phrase "Not tonight, honey ..." but a 2006 study found that migraine sufferers had levels of sexual desire 20 percent higher than those suffering from tension headaches. The finding suggests sexual desire and migraines might be influenced by the same brain chemical, and getting a better handle on the link could lead to better treatments, at least for the pain portion of the equation.

4. Women feel more pain

Any man who has watched a woman having a baby without using drugs would swear that women can tolerate anything. But the truth is, guys, it hurts more than you can imagine. Women have more nerve receptors than men. As an example, women have 34 nerve fibers per square centimeter of facial skin, while men average just 17. And in a 2005 study, women were found to report more pain throughout their lifetimes and, compared to men, they feel pain in more areas of their body and for longer durations.

5. Some animals don't feel our pain

Animal research could offer clues to eventually relieve human suffering. Take the naked mole rat, a hairless and nearly blind subterranean creature. A study this year found it feels neither the pain of acid nor the sting of chili peppers. If researchers can figure out why, they might be on the road to new sorts of painkilling therapies for humans. In 2006, scientists found a pathway for the transmission of chronic pain in rats that they hope will translate into better understanding of human chronic pain. Lobsters feel no pain, even when boiled, scientists said in a 2005 report that is just one more salvo in a long-running debate.

What you can do

Meanwhile, exercise is a useful remedy for many types of chronic pain.

In an Italian study detailed in the May issue of the journal Cephalalgia, office workers did relaxation and posture exercises every two to three hours. Over an eight-month period, they kept diaries, which were then compared to those of a control group that did not change habits. In the end, the group that exercised reported that headaches and neck and shoulder pain decreased by more than 40 per cent, and their use of painkillers was cut in half.

"Physical activity is actually a natural pain reliever for most people suffering from arthritis," concludes another study published in the Arthritis Care and Research journal in April. "Even minor lifestyle changes like taking a 10-minute walk three times a day can reduce the impact of arthritis on a person's daily activities and help to prevent developing more painful arthritis," said Dr. Patience White, chief public health officer of the Arthritis Foundation. "Physical activity can actually reduce pain naturally and decrease dependence on pain medications."

Thursday, July 24, 2008


I threw a party at my house tonight. I cooked for hours, and did a thorough cleaning on my house. Had the DH helping me a bit, but I did most of it myself. I had a wonderful time with my guests. Later in the evening, the people who stayed awhile sat out on the deck with me and we drank wine and chatted.

I could not have dreamed of doing this last year, or the year before, or even the one before that. I am so much better.

I am so thankful.

Tuesday, July 22, 2008

"ME, my bed, and I"

Borrowed from a new friend on myspace, whose site is a "ME-CFIDS-PVFS-FMS-MS-RA-Lyme-Lupus and related diseases support page". She goes by the name "ME, my bed, and I". I asked her if I could borrow this since so many of us Cushing's and post-op Cushing's patients are Vitamin D deficient. She graciously agreed:

Vitamin D metabolism and Th1 inflammation1,25-D is manufactured in the cytoplasm of Th1 activated macrophages by enzymatic conversion of 25-D to 1,25-D. The P450 enzyme involved is CYP-27B1, and the conversion occurs in the mitochondria of the activated macrophages. This conversion is catalysed 30-fold by the presence of Interferon-gamma, the cytokine characteristic of a Th1 immune reaction. The mitochondria do not have significant quantities of the enzyme CYP-27A1, which is necessary for 1,25-D to be produced directly from 7-dehydro-cholesterol, which is most probably the pathway that the body preferentially uses when one is isolated by geography or season from ingesting food with Vitamin-D in it. The Vitamin D ingested is converted to 25-D, and it then directly fuels the out-of-control production of 1,25-D in the mitochondria of the Th1 activated macrophages. Production of 25-D when exposed to sunlightThe keratinocytes of the skin can, by comparison, make 1,25-D directly from 7-dehydro-cholesterol, and they do this when exposed to sunlight. Because the final stage of this reaction is also catalyzed by any Interferon-gamma from any inflammation paracrine to the keratinocytes, any and all 25-D which is made from sunlight is energetically converted to 1,25-D (OK, well, NEARLY all ). Thus sunlight is not usually a significant contributor to the 25-D levels of Th1 patients. It is ingested Vitamin D which primarily fuels the over-production of 1,25-D in activated macrophages, and which exerts the immunosuppressive action upon the host. Ipso facto, when 1,25-D is elevated because a Th1 patient is ingesting Vitamin D, the immune system cannot kill the intraphagocytic bacteria, there is less cytokine release, and the patient feels better and may even become less symptomatic - in the short term. Of course, as far as we know, the bacteria are now (slowly, chronically) multiplying, unhindered, in the cytoplasm of the phagocytes. Dr. Trevor Marshall, PhDMacrophages also produce Vit. D in response to UV light (not just keratinocytes) 4/9/2007UVB-induced 1,25(OH)2D3 production and vitamin D activity in intestinal CaCo-2 cells and in THP-1 macrophages pretreated with a sterol Delta7-reductase inhibitor."In conclusion, preconfluent CaCo-2 cells and THP-1 macrophages are able to induce vitamin D activity upon UVB irradiation and hence combine all parts of the vitamin D photoendocrine system, a characteristic which is therefore not keratinocyte specific."Fish make Vitamin D in the absence of UV light See for example "Cloning of a functional vitamin D receptor from the lamprey (Petromyzon marinus), an ancient vertebrate lacking a calcified skeleton and teeth" personally believe that UV light is not necessary for for Homo sapiens either. Mankind has been hung up on the "sunshine" concept, and has not gone looking for the enzyme which allows the electrocylic cleavage of the sterol ring. So they haven't found itStandard human logic has failed to understand the steroidal nature of Vitamin D. Biologists are now publishing an average of one paper a day describing the steroidal actions of Vitamin D. But nobody in clinical medicine seems to notice. (VDR pubmed results)..Trevor..Read more on the Vitamin D Tutorial at the Marshall Protocol Study Site

Monday, July 21, 2008

Why My Purse is so BIG

I had surgery 18 months ago to remove a small tumor from my pituitary gland. I'd been sick for about 12 years, and very sick for the last 4. I went into the surgery thinking that I would go back to "normal" afterwards. Well, people tried to warn me it wasn't quite that simple, but I am sometimes optimistic to the point of being dense. So I found out the hard way (which really is the way I generally find things out) that recovery from Cushing's is not as simple as I'd hoped.

Recovery from the surgery was a breeze for me. I had a surgeon that I consider to be one of the best operate on me. (This doesn't mean I liked the man. I rather didn't!) I am very thankful that I chose him to do my surgery because it was easy. He had me up walking around the ward within hours of my surgery.
My cortisol level was 5 the day after surgery, and I was having great difficulty staying awake until they gave me hydrocortisone to get my levels up. Miraculous drug! I love it! Umm...I hate it, too. But I depended on it to keep me alive for about a year, so I have to give it it's fair props.

Recovery from Cushing's is a long, drawn out affair. If the surgery was successful, cortisol levels fall to below normal physiological levels. In order to deal with the stress of life, cortisol is necessary. Without it, you would die. Cushing's patients are used to having high levels of this hormone - it's what makes us fat, turns our faces red, gives us night-sweats and panic attacks, and lots of other nasty things. When we have surgery to remove the source of all the extra, our body goes into withdrawal of sorts. So we need replacement steroids for awhile until the body gets accustomed to the lower levels. The adrenal glands stop making cortisol at all while we are on the steroid, and we have to slowly wean off of that in order to get the adrenals working properly once more. Sounds simple, doesn't it? Well, it's not! An illness or stress make us require more. So that makes the wean take longer. It took me a little less than a year to get off the hydrocortisone.

Oh happy day! Won't need that anymore! Wrong! Here I am 18 months after surgery and some days I still need it. It's not often, but it happens. And that is why I carry a big purse these days. It is filled with the life-saving drugs that I still might need from time to time. There is hydrocortisone, fludrocortisone, a syringe with Solu-Cortef, and Zofran for nausea.

I am so ready for a smaller purse.

Saturday, July 19, 2008

Moving On

I'm writing this blog in the hope that it will help me move on. I've survived Cushing's Disease, and now my husband and I are trying to survive another attack on our peaceful existence.

Recently we have had life-altering experiences. We moved out in the boonies where some of our friends have told us they wouldn't live if their lives depended on it. We've also both lost our jobs due to corporate restructuring. So we've had hours and hours to contemplate our lives, and stare into the woods, and listen to birds we've never heard before. In six months, our lives have totally changed. It's been difficult at times. We didn't worry about money in our old lives, but now we will probably have to learn to live on about half of what we were bringing in before. The thought "we worked too hard to lose everything!" keeps rolling through my mind. And then in the next hour I will think "if we lose all our stuff, we will still be ok, we have each other". It's a constant struggle between fear and faith.

Life is so funny. Funny peculiar sometimes, as well as funny ha-ha. We never thought we'd be in this position. We worked hard and we were dedicated to a company that apparently did not value our dedication.
He is stoic, having put 34 years into that place. But I am not stoic. I wear my heart on my sleeve. I waiver between anger and relief!

I've been wanting to move on ever since this happened. It's been 6 months now. I want to not care that they discarded us in such a cruel fashion. I want to meet their eyes and have them know that they did not ruin us. I want to be able to say "It was the best thing that ever happened to us." I feel that I am getting closer to that. The boonies are healing me, I think.