Monday, April 30, 2012

Day 30: A New Way of Thinking



This is the last day of blogging every day in April for the Cushing's Awareness Challenge.

For many months and like many Cushies, I have been feeling so STUCK and HOPELESS.  I felt like nothing I do seems to matter until I can get Cushing's off my back. There is just no need to keep rehashing what I already know: I am sick and uncured.  I KNOW!  Why must I remind myself of it every few minutes of every day?!


Someone recently reminded me that signs are all around us. Our minds must be open to see it, and our hearts must be open to take it in.  During this challenge, I have had many signs signaling to me what I need to do to move forward in my life.



I realize now that I have the world ahead of me, and it is my duty to pump as much life back into my daily living as I possibly can.

Time to learn to live with it because it is part of my life, at least for now.

From now on, I will work to think about myself in a much more positive light.

I will forgive myself more, and I will give myself a break.

I am doing the absolute best that I can each and every day. Some days I can do some things, and on the other days, I will rest and try again another day.

I must be more loving to myself.  I must drop all the guilt I feel about not being the kind of person/ friend/ mother/ wife I want to be, the kind of person that I used to be, not like this person I just met who is fabulous, or anything I wish I could do but can't quite do it now.

That is such a waste of effort!  I tires me, and I am already so exhausted. There is no reason to pile it on more.

I will make more effort to celebrate my caring spirit as I continue to help those around me who learn to live with Cushing's.

I don't do it enough, but I, too, must learn to deal with Cushing's with Moxie... every hour and every day it is with me.  It is the only way I know to continue moving forward and surviving this journey.

Onward,
Melissa

P. S. Just to compare, you can see day one's post for my Old way of thinking.  As for me, I'm not looking back.

Day 29: Dr Friedman's Everything Guide to Thyroid




The Everything Guide to Thyroid Disease: 

From potential causes to treatment options, all you need to know to manage your condition and improve your life

Purchase it on Amazon.com for only $11.

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I am a patient of Dr. Theodore Friedman in Los Angeles, California, but like many, I traveled to see him when I lived in Texas.  Dr Friedman is a Cushing's expert and specializes in difficult-to-diagnose cases of the pituitary, adrenals and the entire endocrine system.  Dr Friedman sees five to ten patients with Cushing's each week and has for many years.
Doesn't make it sound that rare, now, does it?

If you are also interested in understanding the ins and outs of the thyroid glands -- overactive (hyperthyroidism), underactive (hypothyroidism), or self-attacking (Hashimoto's) -- I encourage to take a peak at this book.  It may be just what my doctor ordered.

If you would like more information about Dr. Friedman and his practice, read this excerpt from his website, GoodHormoneHealth.com:

So many of us believe that fatigue, weight gain, loss of libido and other problems are just symptoms we must learn to live with.  What if these symptoms are not the result of stress, diet, or aging, but are actually caused by a hormonal disorder?  Symptoms of hormone deficiency or excess may be subtle and difficult to diagnose.  Many hormonal problems are misdiagnosed as depression, especially in women.  


You know your own body better than anyone else, and you know when something is wrong.  Dr. Friedman is a compassionate, caring physician who will listen carefully to your concerns and work with you to establish a treatment plan.  As an experienced, board-certified endocrinologist and researcher, he has the capabilities to diagnose and treat even the most difficult hormonal problems.  Dr. Friedman has found that some of his patients suffer from undiagnosed pituitary or adrenal problems. These include many people suffering from Cushing's disease, which can present a baffling array of symptoms and is frequently misdiagnosed. Other patients may have pituitary or adrenal insufficiency, which has numerous symptoms and is equally hard to diagnose. Dr. Friedman is a world expert in these difficult-to-diagnose diseases and he welcomes inquiries from patients and their physicians.


Day 28: The Buffalo Hump



In the five years since I first learned of Cushing's, I have noticed many discussions among Cushies about their buffalo hump.  Folks just discovering Cushing's are particularly fixated with this discovery.

Who ever knew that an innocent deposit of fat could be a cause of such scorn, concern and distress?

I wrote about my self-guided path to diagnosis back in 2008. Today, I realized I haven't mentioned much about the buffalo hump since that post.  I now realize I have been remiss in not giving the buffalo hump the exposure it necessitates. The people want to know!

The buffalo hump -- listed among other many Cushing's symptoms -- was my a-ha symptom.

Excerpted from the post describing my self-guided path to diagnosis:

Not only did I experience nearly all of the symptoms on the list, I knew when I read the words "buffalo hump" that this was it. I just knew this is what I had.


Here is the buffalo hump picture I saw on the internet:


www.cushings-help.com


Here is my buffalo hump.
www.cushings-help.com
Copyright. Cushing's with Moxie. No reproduction without sourcing.
Copyright. Cushing's with Moxie.
No reproduction without sourcing.


I searched the internet to see what else could cause a buffalo hump.
  • Cushing's (overproduction of cortisol caused by tumors in the pituitary or adrenal glands)
  • Long term use of steroids (when persons with normal cortisol production regularly take synthetic cortisol such as prednisone as medication to relieve the symptoms caused by another illness)
  • Pituitary tumor (could be source of Cushing's)
  • Hyperinsulinaemia (could be part of symptomology of Cushing's)
  • Morbid obesity (not on its own, usually part of the symptomology of Cushing's)
  • HIV and AIDS medications.
  • Kyphosis (this is so easy to distinguish from a buffalo hump that I can't believe it made this list.  Kyphosis affects vertebrae between the shoulder blades and mid back, while a buffalo hump begins four inches below the hairline along the neck where the tops of the right shoulder and left shoulder meet in the middle.
    You can see kyphosis diagrams here and here.)
    NOTE: I measured my buffalo hump this way: hold up your right hand and tuck away your thumb. Place your four fingers sideways on your neck, with your pinkie touching the bottom of your hairline.  My index finger touches the top of my buffalo hump.
I looked up all the unfamiliar terms, and I knew they didn't apply. It could only be Cushing's.

My hump and me on a good day. We have a roller coaster relationship.Copyright. Cushing's with Moxie. No reproduction without sourcing.
So, to give my buffalo hump the credit it is due, I will share what I have learned about them over the years.


Q:  Is this a really a buffalo hump?
A:  If a person is asking about a buffalo hump, it is usually a buffalo hump.  Small or large, it is a hump. Accept this odd symptom especially when a patient has many other symptoms of Cushing's.

Q:  My doc says my hump is from obesity, but it looks like humps from diagnosed Cushies.
A:  Your doctor probably means well, but s/he hasn't seen as many Cushies as we have in the online community. In the past 60 months studying Cushing's and seeing my Cushie friends as real-time case studies, I have seen hundreds of patients think they have Cushing's, get knocked around in the diagnosis phase, only to have biochemically proven Cushing's with multiple tests (urine, saliva, blood) and/or ACTH-stained pathology from tumor(s) removed in pituitary surgery.
Also, see questions above.

Q:  My hump hurts. Does yours?
A:  Yes, mine kills me! My buffalo hump pulls at my neck making it hard to hold upright some days. I have spent hundreds of visits over the past 15 years at multiple chiropractors always looking for relief from the buffalo hump pain.  It never goes away, but sometimes I get relief for a few days.  Oh, how much money I must have spent in copays at the chiropractor!

I missed many days of work because this thing.  I would wake up and couldn't move my neck.  I couldn't lift my head off the pillow and would have to roll over onto my stomach to then push myself up off the bed just to get myself upright. It was not pretty.

Even today, I experience so much pain from this thing.  I feel a tension running from my neck down my right shoulder and no amount of heat/ ice combinations or stretching will ameliorate the pain.  Typically, I have to take pain medication and lie down in order for relief to find me.

Also, my buffalo hump gets hard and soft!  It is so strange!  When the hump feels hard, it is usually causing me some pain.  When it is softer, sometimes I can press down and feel like I am not pressing on bone. It feels looser or softer.  I remember teling a Cushing's specialist about this, and he said, "I hear that all the time, but we don't know what causes the pain in a fatty hump or what makes it go up or down." Hmmphh. Neither do the patients!

Q:  Will it go away after pituitary surgery or when I am cured?
A:  Unknown.  Some say yes, some say no.  My presumption is to make sure your cortisol normalizes before really thinking you are gonna see any change.  That may take years after surgery (-ies).

Q:  My doc says it's a dowagers hump. My mom says it is poor posture. Could this thing really be a buffalo hump?
A:  They are wrong. A buffalo hump and kyphosis bump are located in different places on the spine. See discussion on kyphosis above the photo.  Also, when I take my side profile photos, I stand up super tall, shoulders back, head straight up as if a string is pulling my head up through the ceiling. Guess what? I still have a hump. It is not poor posture.

Q:  What do you do to hide your buffalo hump?
A.  To be honest, I don't hide my hump.  I can hardly drag myself out of bed or make it to the shower daily.  I have to focus on the big stuff, and for me, vanity flew out the window about 100 pounds ago.
However, I have seen others concerned about camouflaging their humps. Some wear their hair long to cover it, while others never wear a ponytail.  Some only wear collared clothes and never collarless clothes.  Again, for me, I can't be bothered by that thing!  Perhaps it helps that I can't see it every day, so really, I kinda forget about it.  Since you really can't do much about yours until your Cushing's is cured, I suggest you just forget it is back there, too. :)

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I saw this photo comparison for the first time this week. You can also see fat in the patient's neck and cheeks.



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Yes, this is a real place!  
Buffalo Hump Lake is located in south central Wyoming.

Day 27: Create Awareness by Telling Your Story



We build awareness about Cushing's when we share our own experiences. When others see themselves in our stories, we save that life and any others who learn from that person's experience.

Women & Diagnosis:
Help for Ladies Home Journal Article

Hello Moxie,

At the Pituitary Network Association, we are always hard at work trying to raise awareness for pituitary issues that affect patients like you, family members and physicians each and every day. And now, we need your help!

Most immediately, Ladies Home Journal Magazine is looking for women who were convinced something was medically wrong with them and who diagnosed their own illnesses despite baffled or even dismissive doctors. Ideally, this person should be diagnosed and currently being treated for their condition. If this situation sounds like you and you have a strong, working knowledge of your condition, and can speak about it in detail with the media, we would love to hear from you.

We are also looking to build our database of patient stories for future and ongoing media opportunities and requests. If you would be willing to speak openly about your story to the press, it could greatly help us raise awareness for others going through similar situations.

If you can help with either of the above requests, please e-mail us at info@pituitary.org. We will be in touch with further details.

Thank you!
The Pituitary Network Association is a strong advocate for those fighting pituitary tumors.

Source: Pituitary Network Association, www.pituitary.org

Day 26: Endocrine System Overview



In order to understand Cushing's, a patient must have a solid understanding of the endocrine system.  Today I share with you a very informative site describing the endocrine system.  This site has very cool diagrams; in fact, they are some of the best I've seen.  It includes information I have not seen on any other site that I have found.

The cellular stuff is hard for me to grasp, even after 60 months of living and studying this stuff.  However, I still try to learn.  Don't worry if you can't learn it all either.  For Cushies, learning new information and retaining what we learn or know is one of the most difficult mental tasks we face.  Always just do the best you can.


The Adrenal Glands: where they are and what hormones are made

How the Adrenal Glands Respond to Short-term and Long-term Stress