Inside the journey of a teenager

I just created a new blog called "The Journey of Jessica"that I'm going to use to keep track of my journey from now on. I really wish that I would've started keeping track way back when this all started, but it's never too late:). I got the idea from Steve who started a new blog to keep track of his life after his BLA.

My blog doesn't have much now, just the "introduction" to my story. I hope to blog about the struggles and triumphs that I go through with this disease.

-Jessica.

Dr Friedman

Cushing’s Recovery Update: On this day last year…

On this day last year at this very moment I was preparing myself to go the hospital to have an adrenalectomy to remove my right adrenal glad. I had developed a 3cm benign tumor that turned into Cushing’s syndrome.

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

What do you do when your doctor won’t listen

There’s no question that our health care system is over-burdened and underpaid and as a result, patient care has gone down the tubes. I know, depressing - especially when you’re relying on these people to figure out what’s wrong with your body.

So what do you do when you’re health is going downhill and your doctor brushes it off, saying you ‘need to eat better and exercise more‘.

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

New York Times Article on Pituitary Tumors

at http://health.nytimes.com/health/guides/disease/pituitary-tumor/overview.html?scp=1&sq=pituitary%20tumours&st=cse

A pituitary tumor is an abnormal growth in the pituitary gland, the part of the brain that regulates the body's balance of hormones.

The pituitary gland is a pea-sized endocrine gland located at the base of the brain. The pituitary regulates and controls the release of hormones from other endocrine glands, which in turn regulate many body processes. These hormones include:

• Adrenocorticotropic hormone (ACTH)
• Growth hormone (GH)
• Prolactin
• Thyroid-stimulating hormone (TSH)

About 75% of pituitary tumors release hormones. When a tumor produces too much of one or more hormones, the following conditions may occur:

• Central hypothyroidism (excess thyroid-stimulating hormone)
• Cushing syndrome (excess adrenocorticotropic hormone)
• Gigantism or acromegaly (excess growth hormone)
• Prolactinoma (excess prolactin)

As the tumor grows, hormone-secreting cells of the pituitary may be damaged, causing hypopituitarism.

The causes of pituitary tumors are unknown, although some are a part of a hereditary disorder called multiple endocrine neoplasia I (MEN I).

There are other types of tumors that can be found in the same area of the head as a pituitary tumor:

• Craniopharyngiomas
• Cysts
• Germinomas
• Tumors that have spread from cancer in another part of the body (metastatic tumors)

About 15% of tumors in the skull are pituitary tumors. Most pituitary tumors are located in the anterior pituitary lobe and are usually noncancerous (benign).

Pituitary tumors develop in about 20% of people, although many of the tumors do not cause symptoms and the condition is never diagnosed during the person's lifetime...

~~~~~~~

This article also includes causes; a comprehensive symptoms list; treatments and much more.  Read it at http://health.nytimes.com/health/guides/disease/pituitary-tumor/overview.html?scp=1&sq=pituitary%20tumours&st=cse

~~~~~~~~~~~~~~~~~~~~~~~

MaryONote:  It's so nice to see articles like this getting out into the mainstream press.  For so many years pituitary tumors weren't talked about.  As a matter of fact, often when I've told people about my surgery they didn't even know where the pituitary gland was located.  Many would indicate the abdominal  area and think it was there.

Hopefully, with more news items in papers and on TV the general public will be more aware of the pituitary (and adrenal) and their various locations.

Someday...I wish...that people will be aware of Cushing's like they are of thyroid issues or diabetes.  not that I wish that more people had Cushing's, of course, but I'd just like to see more awareness, knowledge and understanding.

Someday, I hope that people will be tested more routinely for these "orphan diseases", doctors won't automatically decide that the patient is causing his/her own symptoms and get to the diagnostic and treatment phases more quickly.

A statistic I've seen many times over the years, that 20% of all people have a pituitary tumor was mentioned in this article:

Pituitary tumors develop in about 20% of people, although many of the tumors do not cause symptoms and the condition is never diagnosed during the person's lifetime.

The last part is especially scary:  "the condition is never diagnosed during the person's lifetime."

How about getting people diagnosed - and cured - while they're still alive?

Originally posted on Cushing's & Cancer

The pitfalls of modern medicine and lab results...

I see the question all the time, what are the normal reference ranges for XYZ lab tests. The easy answer is it depends on the lab you are using. So, how does a lab determine what is "normal". You probably would have to ask each lab because I am sure there is a method to the madness. A problem, at least maybe for doctors, is that health care consumers are becoming educated on their own health. Michael Kleerekoper, MD, MACE describes on this site that:

What exactly is the problem? If the reference interval for potassium in your institution’s lab is 3.5 mEq/L to 5.4 mEq/L and the patient’s value is 3.4 mEq/L or 5.5 mEq/L, it is highlighted as “abnormal” when the results are posted. Increasingly and appropriately the patient gets a copy of the lab report sent to their home and they can’t miss these abnormal labs.

Read the entire article at Thankful For the Journey

From My Email

IN MEMORY .. . . . . . .

These are the colors that represent the different cancers. All you are asked to do is keep this circulating. Even if it's to one more person. In memory of anyone you know that has been struck by cancer.

 

A Candle Loses Nothing by Lighting Another Candle.

Please Keep The Candle Going!

This one I do ask that you please send on.  By sending this on, you will think and realize how you've been blessed,  up until now.

This is a disease that affects all families.  No one is exempt!

~~~~~~~~~~~~~~~

MaryO'Note: All of the above can be said of Cushing's, too.  We have a ribbon - one unified ribbon for any type of Cushing's.  Cushing's can affect any family, any age, any race.

If you don't have Cushing's OR cancer, consider yourself blessed.  If you don't have Cushing's AND cancer - wow, you're lucky.

If you have both - welcome to my life. 

I've known many struck down by cancer but I've known many more struck down by Cushing's.  Cushing's is an insidious disease.

 Like Natalie, you think you're cured, good to go but you're not.

Like Sue, you're cured of Cushing's then cancer comes along and you don't have a chance.

Like Martha, you're on your way to a Cure for Cushing's.  Then...

Like Cookie who soldiered on through Cushing's, Nelson's, adrenal and pituitary issues, to finally end up on dialysis.  How unfair is that?

So many Cushies over the years, far too many.  There are probably even more that I never even heard of.

I sometimes think of the 2 diseases I had.  Sure, cancer is hard, scary, life-threatening, painful.  But I often think Cushing's is harder.

Everyone knows about cancer and forwards notes around like the one above.  When was the last time there was a forwarded email asking people to support Cushing's, to advocate for a cure, for better testing?

We need to keep pushing to get the word out about Cushing's so the Natalies, Sues, Marthas and Cookies have a better chance to LIVE.

Originally posted on Cushing's & Cancer

Survival Lessons From a Sinking Plane - Well Blog - NYTimes.com

Survival Lessons From a Sinking Plane - Well Blog - NYTimes.com:

"“...We’ve heard from people on the plane that once it crashed people were calm — the pervading sound was not screaming but silence, which is very typical,” said Ms. Ripley, who for years covered floods, plane crashes and other disasters for Time magazine. “The fear response is so evolved, it’s really going to take over in a situation like that. And it’s not in your interests to get hysterical. There’s some amount of reassurance in that I think.’’

In her book, Ms. Ripley chronicles how individuals and groups behave during disasters ranging from the tragic Beverly Hills Supper Club Fire to the World Trade Center attacks. World Trade Center survivors, for instance, describe the stairwell evacuations as quiet and orderly, despite the chaos around them.

“You don’t hear the mayhem and hysteria that we would expect,’’ Ms. Ripley said. “That doesn’t mean people aren’t frightened. It means their brain is paying attention to everything going on and they are waiting for direction...’’"

I have never been in a plane crash - thank goodness - but I have found all this to be true when facing potential health disasters in my life.

Husband having a stroke after a TIA; mom being diagnosed with cancer once and a second time; dad going through cancer twice, chemo; me finding out I have a pituitary tumor that has to be removed, me finding out I need my kidney removed due to cancer NOW.

During all those events, I was calm as a cucumber. Got done what I needed to do. Talked to people I never would have. Never afraid. Race to the hospital from a sound sleep. Argue with hospital staff that we were at the wrong hospital. Carry dad up the stairs to the doctor when the elevator was out. Whatever.

But when it was over, I'd fall apart. Then there was time to think and realize the what-ifs. What if it spread? What if the stroke was paralyzing? What if the tumor couldn't be removed? What if there was no cure...?

I imagine those flight survivors are thinking about all the what-ifs today.

I hope their dreams and "playbacks" are better than mine sometimes are!

Do you think you have Cushing’s?

I recently received an email from a young woman who is struggling to get tests to determine if she has Cushing’s, but her symptoms point to cyclical Cushing’s. Her story of being bounced from doctor to doctor is all too familiar. In her case, like many others, these doctors won’t commit to additional testing to get to the root of her problems - they attribute her inability to lose weight to poor diet and lack of exercise. Looking at it from the surface, I think just about anyone could give that advice. What’s really frustrating is the fact that these doctors are ignoring the long list of symptoms she’s experiencing. In my opinion it’s a doctor’s responsibility to follow through with their patient’s health care. And if a patient complains of abnormal symptoms, then it’s the doctor’s responsibility to do what’s medically necessary to get to the root of the problem.

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

The New Year

So, the New Year is going.

I haven't kept any resolutions but, then, the ones I "made" were the ones I always do - exercise more, eat less, drink more water, tidy the house more.

I think that those are all kind of hopeless.

I think I'm doing generally better than I was last year at this time.  My counselor thinks I am, at least doing better than I was two years ago.

We both think it's maybe because of my part-time, temporary job.  I'm getting out of the house more, being with people, getting away from talking about Cushing's all the time and working on the computer with websites, news items, blogs and whatnot.

Read the rest at Cushings& Cancer

Free Book Online: Living Healthier and Longer - What Works and What Doesn't

Welcome to the online edition of "Living Healthier and Longer - What Works and What Doesn't".

by Carl Bartecchi, M.D. and Robert W. Schrier, M.D.

Download and Print the Entire Book Free!

This is book is part of an innovative public health initiative to disseminate timely, accurate, and understandable health information on a wide scale.

This book has been provided, free of charge, to 60,000 households in Pueblo, Colorado, thanks to the generous contributions of:

The Chamberlain Foundation
Parkview Medical Center
The Pueblo Chieftain
Pueblo City-County Health Department
Ryals' Family Foundation
St. Mary-Corwin Medical Center
University of Colorado School of Medicine

We are also making it available on this
website or soon you will be able to order a printed version for a nominal fee to cover book, handling and mailing.

The world is nothing more than all the tiny things you left behind…

I wouldn't usually post about a movie. This one touched me on many levels. I can see how someone fighting demons and a serious illness might have the same reaction I did. This movie is one to see. Clint Eastwood's movie, "Gran Torino" is a gem. There is a great message in the movie, if one stops to see it. The movie takes place at the funeral of the man played by Clint Eastwood. We quickly see a ma...

View the story here

Robin Does SO Much For Us...

...and for Cushing's Awareness.  Time to give back!

Please vote for Robin (staticnrg) in the The 2008 Medical Weblog Awards.

Choose her blog "Survive the Journey" at http://medgadget.com/2008bestpatient.html

Some ideas for a Better Life in 2009 (from my email)

1. Take a 10-30 minute walk every day. And while you walk, smile. It is a good anti-depressant.

2. Sit in silence for at least 10 minutes each day.

3. Tape your late night shows and get more sleep.

4. When you wake up in the morning decide what you will do,
'My purpose today is to __________.'

5. Live with 3 E's -- Energy, Enthusiasm, and Empathy.

6. Play more games and read more books.

7. Make time for meditation and prayer.  They provide us with daily fuel for our busy lives.

8. Spend time to absorb the wisdom and enthusiasm of people over the age of 70 and under the age of six.

9. Dream more while you are awake.

10.  Eat more foods that grow on trees and plants.  Eat less food that is manufactured in plants.

11. Drink green tea and plenty of water.  Eat blueberries, wild Alaskan salmon, broccoli, almonds & walnuts.

12. Try to help at least three people smile today.

13. Clear clutter from your house, your car, and your desk.  Let new and flowing energy into your life.

14. Don't waste precious energy on gossip, or issues of the past, negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.

15. Realize that life is a school and we are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class did. But the lessons you learn will last a lifetime.

16. Eat breakfast like a king, lunch like a prince and dinner like a college kid with a maxed out charge card.

17. Smile and laugh more.

18. Even when life is not fair, it's still good.

19. Life is too short to waste time in negative thoughts, actions or energy.

20. Don't take yourself seriously.

21. You don't have to win every argument. You can agree to disagree.

22. Make peace with your past so it won't spoil the present.

23. Don't compare your life to others'. You can only guess at what their trials may be.

24. You are in charge of your happiness.

25. Greet so-called "disasters" with this question: 'In five years, will this matter?'

26. Forgive everyone.

27. Dwelling on what other people may think of you is a waste of time and energy

28. REMEMBER GOD heals every wound.

29. However good or bad a situation is, it will change

30. Your job won't take care of you when you are sick.  Your friends and family will.  Stay in touch.

31. Get rid of things that are not useful, beautiful or joyful.

32. Envy is a waste of time.

33. The best is yet to come.

34. No matter how you feel, get up, dress up and show up.

35. Do the right thing!

36. Call your family often. (Or email them)

37. Each night complete the following statements:
I am thankful for __________ today.
Today I accomplished _________.

38. When you are stressed, remember that you are also blessed.

39. Enjoy the ride. This is not Disney World and you don't want to rush through it. Be thankful for this ride through life; enjoy the ride and make the most of it

 

Thanks, Tom :)

Also posted on Cushing's & Cancer

Addison's, sort of

Parents brought home a lot of Addisons and Jaydens in 2008 - Quad Cities Online:

"Addison was the most popular name for baby girls and Jayden was the most popular name for baby boys born at Genesis BirthCenters in 2008."

I only learned of this trend because of the Google Alerts I have set up.  One is for Addison's.  I was hoping to get information about Addison's Disease. Instead, I'm seeing about Addison's first birthday, Addison's first Christmas, Addison goes to jail...

Precious little about Addison's Disease.  Maybe 2009 will be the year to write more about this disease.  I already have a website about it (DUH!) but maybe there needs to be more awareness on this front, too.  Cushing's is getting pretty well out there now.

Parents must not be doing their homework!  Why in the world would someone name their child something that's a serious disease?

Will future kids be named Cancer or AIDS?  I think not.
I guess this is just a trend, a faddy type thing and people don't check into what names signify anymore.

I wonder how the parents will feel if someday I meet an Addison and I say: "Gee...I know lots of people who have that..."

Further note - this is published on the Cushings & Cancer blog as well as the brand new Addison's Help blog.

An interesting Blog Post

Works for both Cushing's and various cancers.  The original post is here: http://stanleyfeldmdmace.typepad.com/repairing_the_healthcare_/2008/12/the-therapeutic-magic-of-the-physician-patient-relationship-part-2.html

Part of it reads

The role of patients with chronic diseases and their physicians must be clear to both patients and physicians. Physicians are coaches. Patients are players. They live with their disease 24 hours a day. Day to day fluctuations occur in the management of chronic disease. An excellent example is patients with hypertension. Blood pressure fluctuates all day long. A single blood pressure measurement during a visit to a physician once every six month is meaningless. Patients must continually monitor their blood pressure to evaluate the effect of their medication. Physicians have to help patients evaluate these data points to make logical medication adjustments.

Patients must to be inspired to manage their chronic disease. This requires patients having confidence in their coaches. It is hard work for patients to monitor their blood pressure daily and learn the meaning of the fluctuations in their blood pressure.

How many of us truly have confidence in their doctors?  My kidney cancer doctor I trust to a degree but I realize that he told me some things to make me feel better about my cancer and recovery.

My Cushing's doctors?  The first one I had no confidence in at all.  He did do the right testing, got me into NIH.  All that was good but I wouldn't trust him to manage the after effects of my surgery.

The doctor I have now I would trust with managing my disease but I know his hands are kind of tied, at least as far as GH is concerned, because of the kidney cancer.

It would be nice if we could have more personal physician/coaches.  Ones who truly knew what we were going through and how to help with day-to-day life.

Yesterday's post about a doctor who had steroid-induced Cushing's would talked about a potentially good coach but s/he is feeling too ill him/herself to coach anyone else.

As usual, I don't know the answer but I'd like to find someone who understood my diseases and knew what it was like to deal  on a day to day basis and have some good answers.

Maybe I'll find that person in 2009...

Happy New Year again!

Posted at Cushing's & Cancer