Monday, May 12, 2014

Did you know that Cushing's KILLS??

This weekend the Cushing's community lost another warrior way too early.  Melinda was only 25 years old, but she had been fighting for her health for a long time.  Last year Melinda almost died, and instead of doctors helping her get a cure from Cushing's they accused her of drug use or trying to kill herself!!  I feel ashamed that as a community we could not do more to help this young woman.  And I feel anger at the medical community that at the best they turned a blind eye and at worst deliberately ignored, gave improper treatment, or denied treatments to this poor young woman.

I understand when lay people don't get the seriousness of Cushing's.  I brush off people's well intentioned remarks of "well at least you don't have cancer."  I get it, cancer is in the news all the time; most people know someone who has been affected by cancer.  I have lost friends and family to cancer, but I also have seen friends go through terrible treatments, but then be cured and go on to live happy, healthy lives.  While I have been sick for more than 10 long years.  And even if I get a cure, there will be residual life-long problems I will have to deal with.  I know many people that suffer with life-long disability from Cushing's and sadly I know people like Melinda, and Sarah before her, and a young man whose name I don't know, and countess others who have lost their life to this terrible disease.

However, I can not abide a medical establishment that does nothing, that turns their back on patients during their deepest need, that refuses to educate themselves and refuses to admit that they might be wrong about how rare Cushing's is, about how to diagnosis, about how best to treat, and worse than anything a medical establishment that finds nothing wrong in fat-shaming and fat-blaming even when it leads to the death of young people!!

I apologize to Melinda, and all the other Cushie warriors we have lost too soon.  I am sorry we could not do more for you.  I am sorry the medical establishment failed you, and I vow to fight for awareness, to fight for recognition, and to fight for a TRUE cure in your name!

So next time I post something about Cushing's, please remember this beautiful face and share the information, you just might help save a life.

Tuesday, April 8, 2014

Cushing's Awareness Day!

Today is the official Cushing's Awareness day.  It is celebrated today because today is Harvey Cushing's birthday.  He is considered the father of modern neuroscience, and his observations about pituitary tumors were so groundbreaking that the disease was actually named after him.  In honor of Harvey Cushing I would like to share some information about him.

He was born in Cleveland, Ohio, the youngest of ten children.  His father was a doctor, and Harvey Cushing followed in his footsteps when after graduating from Yale in 1891, he enter Harvard medical school.  Harvey Cushing did his residency at the newly formed Johns Hopkins Hospital.  He later traveled to Europe for further training but returned to the US to practice.  He is credited with developing and refining anesthesia and monitoring techniques still in use today during surgery.  He also pioneered many intracranial techniques in neurosurgery and did extensive case studies on the pituitary gland.  It is believed that no one person did as much to contribute to the field of neurosurgery as Harvey Cushing.

Check out a few websites for more in depth bios of his fascinating life:

I am so thankful for all of Dr. Cushing's study and research to try and shed light on this often confusing disease.  And I am so thankful for the few doctors that have followed in his footsteps.  Their work has greatly impacted my life, and I am thankful for their scientific pursuit and also their compassion for the human side of this disease.

So today, in honor of Dr. Harvey Cushing, I thank all people who work to bring awareness to this horrible disease and everyone who is working towards a TRUE cure!

Monday, April 7, 2014

My Anniversary

I missed Day 6 for the Cushie Blogger Challenge, but day 7 is very important to me.  4 years ago today on April 7th, 2010 I had the first surgery I would have to try and cure Cushing's for me; an endonasal transsphenoidal pituitary tumor removal.  It is a lot of fancy words for brain surgery.  A neurosurgeon went in through my nose, opened up the bottom of my skull, and took out a tumor and part of my pituitary gland.  I felt better for a little while after that surgery, but it wasn't long before we knew it hadn't been a cure for me.  Hopefully this next surgery we are planning for will be the cure I have desperately been longing for.  Until then I will celebrate my anniversary, it was a major step on my journey back to health!

Saturday, April 5, 2014

There are some things worse than chronic illness...

Sometimes it is hard to see past the myopic view of chronic illness.  Your mind is consumed by the daily pain, grief over things in your life you have lost, obsessing over the things you can no longer do...sometimes it is hard to see beyond your own isolated world.  Today, however, I had the chance to participate in a training for a ministry that I really have a heart for.  And it reminded me (something I need to be reminded of sometimes) that I really am blessed in my life.  And though Cushing's disease brings with it many struggles and heartaches, there are many worse things in life than having to deal with chronic illness.
So I resolve tomorrow to remember all the things I have to be thankful for, and instead of focusing on pain, I will be thankful that the fact that I feel pain means I am alive and conscious and aware.  Instead of thinking about what I have lost in life, I will think of all the people that were brought into my life and been a huge blessing to me because of this illness.  Instead of harping on the things I can not do, I will be thankful for the numerous things I CAN do!  And I will pray that other people going through hard times in life can be as truly blessed as I really am!

So while Cushing's bites, and I CAN'T WAIT for my cure, there are worse things.


Chronic pain is such a hot button topic right now.  You have law makers passing very strict regulations on the types and amounts of pain medicines that can be prescribed by your doctor (CNN article), pharmacies refusing to honor prescriptions that are written (Walgreen's scandal), and people all over the country divided on the topic.  For me it is a very personal issue.  Because of Cushing's disease I live my life in chronic, daily pain.  I do not take a lot of pain medication myself because I have adverse side effects to most medication, but on the days where the pain is just not tolerable I rely on narcotic and opiod medications to make it through the day.  And it can be a humiliating experience being in a hospital ER with pain; I can not tell you the amount of times I have been treated like a drug addict when asking for my pain to be adequately managed.  I utilize alternative therapies, homeopathic remedies, and most of the time just deal with it.  But it shouldn't have to be this way.  I think we have done a disservice in our country right now by labeling the majority of people who utilize pain medication as addicts instead of having the more difficult conversations about things like addiction and chronic illness.  But that of course would be messy, so much easier to write a law and wipe our hands clean.  I wish it were that easy.

Thursday, April 3, 2014

My Story

Day 3 Cushie Blogger Challenge:

I have told my Cushing's story many times, to many people, in many different ways, and yet I am still finding out how little people know about how Cushing's has affected my life.  That is just one of the reasons why I love the 30 day blogger challenge.  Getting the word out about Cushing's is so important to me, because if someone had not shared their information with me I may not be here today.

So here is my story:  I started to believe something was wrong when I was a junior in college, although in hindsight, looking back some subtle symptoms may have started as early as junior high for me.  However, in college my symptoms became blatant.  I started having problems with depression, low energy, and a severe inability to sleep and anxiety.  I had some trouble in school, was sent home and told I could not return until I saw a psychiatrist.  Which for me was just crazy because I have always been very positive and upbeat about life, I loved school, and all the activities I was involved in, but something was just wrong.  I was wrongly misdiagnosed as Bipolar at the time, and for the next few years all of the symptoms I brought up to various practitioners were written off because of the mental health diagnosis.  By the time I finished college I had gained about 60lbs from when I started, I suffered from insomnia, muscle weakness, and was very susceptible to infections.  My plan had been to go to medical school after college but I was not doing well physically or mentally so I moved back home to Arizona and began a graduate school program in social work.

I actually did fairly well for a few years, my mental health improved, but I continued to gain weight and become weaker, and I was constantly plagued by infections.  I sought out help from multiple medical practitioners.  I was tested for everything from lupus to HIV to no avail.  I had no answers, and more often than not was told that all of my symptoms were just in my head and due to me being mentally ill.

After I finished my graduate work I went to work as a social worker at a children's hospital, and after a few years I realized how much I missed medicine and I decided to try to get into medical school.  In 2005 I was admitted to the University of Arizona as a new medical student, and things started off great.  I thrived in school and loved living in Tucson.  I was at my highest weight ever, but I seemed to be handling both going to school and working part time.  But less than a year into school I came down with meningitis and after battling that infection things went downhill rather quickly.  I was plagued with severe migraines that kept me from attending class.  I had a very difficult time focusing and my memory was failing.  For the first time in my life I was having difficulty with my academics.  By halfway though my second year I was sick all of the time, amazingly fatigued, in constant pain, and drowning academically.  However, something good did come out of all this.  During a class one day on endocrinology we discussed Cushing's disease.  I sat there with my jaw on the floor as the professor ticked off the signs and symptoms and I realized I met nearly every single one.

Around the same time my mom read an article in Reader's Digest about the 5 most misdiagnosed diseases and she told me she thought I had one of them.  These incidents led me on the path to diagnosis.  It was a very difficult, winding, and painful (both physically and emotionally) path, but I eventually found a doctor who would listen and actively worked to help me find answers.  In 2009 I was officially diagnosed with Cushing's disease, and in 2010 I underwent an endonasal transsphenoidal surgery to remove a tumor from my pituitary gland at the base of my brain.  After surgery I had about 6 months of feeling great, almost normal, but it was soon apparent that I had not received a cure from the surgery to remove my pituitary tumor.

I have spent the last 2 years re-testing, having MRIs, trying medications to mitigate my symptoms, and analyzing and weighing the risks and benefits of different treatment options.  Finally, there is a light at the end of the tunnel for me, as I was recently cleared to have a bilateral adrenalectomy; a surgery where my adrenal glands will be removed.  I will be trading Cushing's disease for Addison's disease, likely death for life long dependence on hormones, and hopefully pain and suffering for a new chance at life!

Wednesday, April 2, 2014

What is Cushing's Syndrome??

Cushing's syndrome is caused by an excess of the hormone cortisol.  The most common cause is a pituitary tumor that releases too much ACTH causing the adrenal glands to release excess cortisol.  Cushing's syndrome can also be caused by tumors on the adrenal gland itself, or a tumor elsewhere in the body.  Cushing's symptoms can also be caused by overuse of steroid medications.

Cushing's can be very difficult to diagnose because many of the symptoms are insidious and come on slowly, and are often common of many ailments.  The most common symptoms are:

  • Central obesity
  • Fatigue
  • Moon face
  • Purple/red stretch marks
  • Thinning hair on your head
  • Excess hair on your face or body
  • Emotional lability
  • Difficulty concentrating or remembering
  • Hypertension
  • High glucose levels
  • Muscle weakness
  • Red face
  • Acne
  • Poor healing wounds
  • Easy bruising
  • Insomnia
While all of us share many symptoms in common each case is different.  If you have been suffering with any of these symptoms, you are your best advocate, ask your doctor to test for Cushing's syndrome!