Saturday, June 18, 2011

My BLAnniversary

14 responses
....or my "ReBirthday" as my friend, Nancy, says, was a few days ago on June 16th.  It has been a year since I had both of my adrenal glands removed to control my Cushing's Disease.

How am I?  Perhaps I'll give you a clue by saying I've been too busy to write this post.  In fact, I'm having trouble finding time to blog at all!  So, I am good.  No, I am great!!  I will always have to deal with some of the ravages of Cushing's Disease, but in comparison to what life was like prior to my BLA (bilateral adrenalectomy), I'm SUPERTASTIC!!  

Some of the good things which have happened:
  • I now go up steps most of the time without even thinking about it.  (Going down is still a problem due to a former broken ankle and a bad knee on the same side.)
  • I've lost almost 80 pounds without even trying.
  • Instead of parking in handicapped parking and using a scooter in stores, I can now park in Timbuktoo and walk all over a store.  Wait...I can even tag along with my daughters and walk through multiple parking lots and multiple stores.
  • I have great hopes now of living to be a decent mother and grandmother.  Shoot, maybe even awesome sometimes!  (My first grandchild is due in July!)
  • I don't mind traveling/driving all by myself and do it often.  I've made more trips to see my girls (and hubby/boyfriend) in the past few months than I have in the previous 8 years. 
  • My mental state is beyond awesome.
  • I find myself smiling and singing all the time.
  • I'm umpteen sizes smaller.  (The bad part is all the sagging skin and eyelids.  Maybe that can be fixed in the future.)  I still have quite a bit of weight to lose.
  • I don't dread things anymore. I used to dread getting up, walking, and so much more.
  • I can see my ears when I look into the mirror.
  • I have skinny ankles. Pretty shoes fit again. 
  • I sleep all night, every night.  I go to bed at a normal hour and get up at a normal hour.
I'm sure there are a zillion other things I can write, and I'll think of them later.  There is so much improvement and I notice something every day!

Are there any "cons"?  No, not in my book.  I wouldn't trade my BLA for anything!  Sure, I have to take medication every day to live, but I get to control how much "cortisol" my body gets instead of it controlling me.  I have been fortunate and haven't had a crisis at all.  I haven't had one visit to the emergency department anywhere.   Sure, infections throw me into insufficiency pretty quickly, but the high side of that is I know I have an infection way before most folks would. 

They say a picture is worth a thousand words. I'm going to let these pictures say the rest for me about the cyclic nature of my Cushing's Disease and how long I had it:

Don't I look like a grandma in that last one??? ;)  I don't know what I was thinking with some of those hair styles.

Read more about episodic/cyclic Cushing's: 
High Prevalence of Normal Tests Assessing Hypercortisolism in Subjects with Mild and Episodic Cushing ’ s Syndrome Suggests that the Paradigm for Diagnosis and Exclusion of Cushing ’ s Syndrome Requires Multiple Testing

Postlude:

Thank you, Dr. M. for finally realizing in 2005 that what I had was endocrine and for sticking with me.  Thank you, Dr. Friedman, for believing me and listening to me, for making me a partner in my health, and for testing me.  You saved my life.  Thank you, Dr. Chiang, for trusting Dr. Friedman and for being the most caring doctor/surgeon I've ever met.  And most of all, thank you Mary O'Connor, for all you do to spread awareness of Cushing's Disease/Syndrome.  You helped me find my life again.  I love you.   I hope all of you see this so you can see what a wonderous work you do.

This would not be complete without thanking my family. My daughters have been my lifeline.  They took two weeks out of their lives and lost vacation time just to take me to surgery and stay with me.  Prior to that, they were here with me when I needed them, helped me do so many things, went with me on trips to see Dr. F, and so much more.  I love you dearly, my daughters, and love the women you are. 

My parents took care of me after surgery, finding any treat they could, cooking anything they could to help me find something I could eat.  They took me for labwork, helped me find DHEA, went to the store at odd hours to get me some gatorade, and so much more.  I love you, Mother and Dad.  And I thank you.

Thanks to all my Cushie folks who support each other.  I'm sorry you have Cushing's, too, but I'm proud to have met you, shared the triumphs and the pain with you, laughed and cried with you.  Hugs.

Tuesday, June 14, 2011

In memory of Sarah

1 responses
Sarah recently had surgery to remove a tumor from her pituitary gland.  This was to treat Cushing's Disease.  She died today.  I hate this disease.

Sarah was only 28. 

You will be remembered, Sarah.

Monday, February 28, 2011

Guest Post: The Other Side of Cushing's -- The Caregivers

3 responses
by Judy Kennedy

I have an (almost) ex husband & two children who all suffered from Cushing’s Disease. While they all had had symptoms for years, Justin was the first to exhibit signs of a true medical problem. Actually, it’s only with hindsight that I know the kids had had symptoms since birth & that Bill’s symptoms had been a constant presence in our lives.

I think I’d been looking for answers for Justin’s medical problems for about a year & a half and was convinced he had Cushing’s when I started noticing Jess exhibiting some of the same symptoms. The kids were partway through their testing before it occurred to Bill that he probably had the same thing.

I was immediately convinced it must be genetic although I was originally told there was no genetic link with Cushing’s. Since then, I know of several other families that have multiple members either diagnosed with or testing for Cushing’s. There is also research studying a genetic connection. In fact, my family is participating in a study.

It’s possible that I have a much different perspective since I’m on the outside looking in when it comes to this disease. I have no idea what it’s like to have Cushing’s but I know very well what it’s like to live with Cushing’s. It’s hell. I’m not trying to discount how a Cushing’s patient feels, I’m just trying to show the other side. So if it sounds like I’m making this all about me, I am. But keep in mind that I am very sympathetic to my family & all Cushies. I just happen to be talking from my point of view.

Many Cushies had children before they knew they had the disease. What I don’t understand are the ones who are so intent on having a child after they know they have Cushing’s. I understand the desire to have a natural child but at the same time I’m not sure I would want to risk passing on this disease. I’m guessing that not all cases are genetic but would I want to take that chance?

Many of you reading this know firsthand what it’s like to have Cushing’s. Would you wish that on your future children? Can you even imagine what it’s like from a mother’s perspective? It’s always worse to watch your children be sick than to be sick yourself. If it would have been possible I truly would have traded the disease for myself and given my kids their health. But I don’t have that power.

Know that the disease affects everyone differently but I did notice a lot of similarities in my family. Maybe that part is genetic also. Other families may have different experiences. I notice that I’m using a lot of disclaimers!!

Imagine what it’s like to have suicidal children, one much more so than the other. I went through months where upon leaving the house in the morning I had no idea if I would ever see my son alive again. It’s not good to hear your fourteen-year-old daughter that can barely drive, talk about thinking of taking the car & leaving in the middle of the night. It’s heartbreaking to find your seventeen year old son curled up under his desk sleeping some mornings, pillows piled in front of him. Was he keeping himself in or something out? It torments the mind to wonder what his thoughts were that lead him to that.

How awful of a mother am I that just seeing my son’s number on caller ID would make my blood run cold (that isn’t just an expression) and dread fill my heart? I hated that I reacted like that but for a few years it seemed he only called when he had problems, medical or otherwise. I learned to cope one crisis at a time and tried to think ahead to what else could go wrong.

Watching a child’s personality change within seconds was very unnerving. One minute things seemed fine and the next it was as if I could feel the anger & hate just radiating from their body. I tried to be an invisible person in the house. I was always the target for everyone’s anger. Even knowing it was part of the disease it got really old. I felt like a stranger in my family. Although I felt like I was doing all I could to get answers for them I sometimes felt like they held me responsible for their problems. It was my fault they had to test.

Even now after they all have a cure (a very relative term) things aren’t easy.

I also notice that there are Cushies who have some Cushie looking children & they don’t seem to notice. I sometimes wonder if they just aren’t ready to deal with it yet or if they really don’t notice.

I’m hoping I didn’t offend anyone. This was just some observations from a mother’s point of view. I’ve been telling my kids for years that I could easily love adopted grandchildren. While it’s not my decision I hope they take it seriously.

Friday, August 6, 2010

Veterinarian vs. MD: A not-so-funny funny....

4 responses
A veterinarian friend of mine shared this with us on the Cushing's Help message boards. Yes, she has had Cushing's.

I'm interested in how my doctor friends/acquaintances perceive this:


Saturday, July 31, 2010

An Analysis of "Preventing Misdiagnosis of Women" (guest post)

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by Jessica Hankins

Introduction:

I am a 34 year old Cushing’s patient, amateur writer, and dedicated volunteer to the service of the youth of the United States. Having a devastating disease such as Cushing’s has not been easy for me. After life-long illness, two failed surgery attempts, losing my job and now having no insurance, it is my hope that this information will help those with endocrine issues find the best care possible, and those that don’t – I hope you understand a little better why so many of us have a difficult time discussing this disease and our mental state.

After my own reading and research, talking to fellow patients and friends, and working with a dedicated endocrinologist, it is my opinion all medical diseases which may cause a psychosocial issue should be ruled out before pursuing a diagnosis of a psychological condition. Many endocrine diseases can be made worse by using medications – sometimes even resulting in death. As health care practitioners, it is your job to rule out complicating conditions. As patients, it’s our job to consider all the avenues possible and to work towards full-time advocacy for ourselves in getting answers.

In the book Preventing Misdiagnosis of Women (Klonof, Landrine), the author quotes a statistic which says 41% to 83% of all people who are treated for psychiatric disorders actually have a physical disorder instead. Briefly, the writer describes Cushing’s Disease, yet does not at all address the issues of focus to which we, as patients, can relate.

It is interesting to note that in this book, the author compares the endocrine system to a symphony of musicians. The hypothalamus interacts as the conductor. The pituitary gland then becomes the baton that everyone follows, and the target glands are the musicians.

Feedback loops are also accurately represented in this model. A musician (the target gland) lets the conductor know that he is performing correctly by his performance. The conductor (the hypothalamus) then can issue new instructions to change something through his baton (the pituitary gland), or continue with the same message.

When an orchestra plays horribly, the problem could be along any step of the way, even though she doesn’t spell this out directly. The conductor could be drunk and send the wrong message to the musicians. Or the musician could have partied too hard the night before and may not be able to stay awake during the performance! So to follow this model, primary dysfunction is a problem with the musicians. Secondary dysfunction is a problem with the baton, and tertiary dysfunction is the fault of the conductor.

Something I didn’t know about anti-diuretic hormone (ADH), but learned reading this book: large amounts of ADH are associated with hypertension. Duh – I could have figured that out if I had been trying! But this causes me to ask the question – could high cortisol affect ADH to cause high blood pressure as well?

This is where we come to my biggest concern about this book. The author states that from her research pituitary disorders are quite rare, and rarely affect focus and mood or can mirror psychological issues. The only disorder she believes comes from the pituitary and is related to psychological issues is hypopituitarism. If she believes that, then perhaps if she understood how pituitary hormones could be hyper instead of hypo, we would be having a different discussion.

The Adrenal Glands/Cushing’s:

I arrived at the discussion regarding the adrenal glands. The writer states that epinephrine and norepinephrine are neurotransmitters and work inside the brain in a variety of ways. What she also mentions is the interesting part, that new theories indicate that those two hormones may be tied to manic and depression issues. Now, if what I have learned is accurate, cortisol is the chaser of these two neurotransmitters, and definitely results in an issue with mood swings!

The writer realizes that Cushing’s syndrome causes a host of psychiatric, neurological and physical symptoms. She also recognizes that the reverse is true, that Addison’s causes these same issues as well. Addison’s disease is discussed in regards to its depressive nature in patients with low cortisol. However, when discussing Cushing’s Syndrome, the author states that 15% of patients with Cushing’s will exhibit “prototypical paranoid or depressive psychosis that includes paranoid or depressive delusions and associated hallucinations.”

This is in stark contrast to the research performed on people with exogenous Cushing’s syndrome, of whom 75% show signs of “euphoria, increased activity level, decreased need for sleep, increased appetite, and increased libido.”

The line between symptoms seems to blur here in anecdotal reality. For those patients looking for diagnosis or have been diagnosed with Cushing’s, there are still issues with a decreased need for sleep, an increased appetite and carbohydrate cravings, and increased activity level. However, many patients are not being diagnosed properly until the physical signs show, and by that time the high cortisol has done its damage, causing other secondary issues such as muscle myopathy, osteopenia and osteoporosis, causing painful muscle loss and bone density issues, respectively.

The book also states that most patients with exogenous Cushing’s do not suffer from the “pressure of speech, flight of idea, expansiveness” or other symptoms. It’s interesting to see these symptoms recognized in writing from a psychologist! Flight of ideas happens to be one of my most uncomfortable issues. As a public speaker and trainer, recalling information and being able to apply it to discussions and questions is a necessity. With Cushing’s, once the information is brought to the front of my mind and I’m ready to use it, the idea will literally flit out of my head and disappear into the ether of space.

I loved this direct quote regarding Cushing’s: “The physical symptoms of Cushing’s syndrome can aid in differential diagnosis but, unfortunately, do not appear until late in the disease. These include weight gain, facial obesity, hypertension, muscle wasting, and amenorrhea. Cushing’s syndrome tends to occur in women (and sometimes in men) ages 20-60 and has no preference for a specific ethnic group.”

The Thyroid:

Hyperthyroidism

Thyroid disorders are covered in chapter two of this book. Again, the data is outdated and only refers to the thyroid hormone thyroxine (T4). The book also states the causes for Grave’s Disease are unknown, but there’s much more research out now days that can be discussed with the thyroid experts.

Hyperthyroidism causes manic and hypomanic episodes, and sometimes even bipolar issues. Attention deficit conditions also can occur. Recent memory impairment (as seen with Cushing’s and Addison’s Disease) can also occur with diarrhea, sweating, increased appetite with weight loss, and red puffy eyelids. Talk about clouding the picture! If a woman is seen with bipolar issues and medication is not working for her, it’s probably a case of misdiagnosis. The key here is that when medications are give (especially tricyclic anti-depressants and lithium), these drugs make things worse, not better. The same also goes for hyperthyroid patients and drugs like Haldol used for anti-psychotics. This author cautions that antipsychotic drugs can and will result in fatal dystonic reactions. That’s an “in-your-face” indicator that something isn’t right! Paying extra close attention to physical signs and symptoms is key to making the correct diagnosis in hyperthyroid patients, and that includes asking questions regarding the aforementioned issue.

Hypothyroidism

Hypothyroidism is one of the diseases which can be affected by a dysfunction in the hypothalamus, the pituitary gland, or in the thyroid itself. Unlike other endocrine diseases, hypothyroidism strikes slowly over time, and the symptoms are persistent, but subtle. Most women I know tend to just deal with the symptoms without thinking they are anything out of the ordinary.

The most annoying symptoms include: slowed thinking, impaired memory recall, having to hear things multiple times to comprehend, fatigue and weakness, depression that increases in severity over time, in ability to stay warm, numbness in the fingers, hearing loss, loss of appetite, long menstrual cycles.

Major depression would definitely account for most of the above symptoms, but it is important to note a severely depressed patient should be referred back to their doctor for a battery of thyroid tests to rule out a physical condition before applying psychological techniques! Believe me, most patients would better understand and be open to a physical culprit than having a psychological label over their heads.

This book brings up another interesting point – hypothyroid patients show marked changes when taking neuropsychological tests such as the WAIS Digit Span, the Halstead-Teitan Trailmaking Test, and the MMPI. These changes indicate severe depressive tendencies, but noted the patient only has changes in the depressive information, while the rest of their scales will be normal, itself an abnormality.

According to the literature cited in this book, both kinds of patients should not be treated with anti-depressants, lithium or antipsychotics. Rapid deterioration will follow such drug treatments.

The need to address physical issues accurately before psychosocial treatment is immense. As noted above, if a patient runs into a psychologist or other doctor who would like treat with drugs before running tests for a physical problem, one should trust her instincts and walk away. Physical disorders should be ruled out before pursuing a medical treatment plan for any psychological issue, especially with the overlap in symptoms we as endocrine patients find.

"Laugh, Sing, and Eat Like a Pig", a must-read!

0 responses

I got a package from e-Patient Dave deBronkart!! W00t!! It made my day/night! Frankly, I got it before today, but I, ahem, did not look on my front porch for a few days. I don't go in/out that way. At least it was tucked up under the overhang nice and dry.

What is it you say??? Why, it's his new book, "Laugh, Sing, and Eat Like a Pig". I am about 1/3 through it now, and I'd be further but I have to stop to laugh out loud or cry or both at the same time. I need a new box of tissues.

Folks, you need to read this book. Dave has already taught me so much about why things are as they are in the healthcare system. I've learned so much from him in so many ways, but this is his personal account while dealing with cancer. He talks about what an e-patient is: empowered, engaged, equipped, and enabled. And you Cushie's will get a kick out of his "Four Early Lessons in Patient Empowerment":
  1. It's up to me.
  2. When your instincts say scram, scram.
  3. If they think your feelings are YOUR problem [emphasis mine], you might want to find someone else 
  4. It's worth traveling to find a doctor you work well with. [My favorite]

Invest in the book, a box of tissues, some healthy snacks, and a good drink. You won't want to miss it. I understand so much better what once just made me angry. Knowledge is power, but understanding is the tool for change. Dave is changing how people think in healthcare, and that is more than powerful. It is awesome.

Dave, thank you for teaching me so much, but most of all, thank you for being my friend.

(Reposted from 365 days with Cushing’s Disease)

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