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.

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:  http://www.whonamedit.com/doctor.cfm/980.html

http://en.wikipedia.org/wiki/Harvey_Williams_Cushing

http://www.medschool.lsuhsc.edu/neurosurgery/nervecenter/cushing.html

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!

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!

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.

Pain

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.

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!

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!

30 Days for Cushing's Awareness

So, last year I attempted to do this, and blog for 30 consecutive days about Cushing's and how it has impacted my life.  I didn't do so well, and I think I made it to day 5.  This year I really would like to meet this goal, and I would love to educate people about Cushing's, a disease I have been fighting for pretty much my entire adult life, and help people understand the path that has brought me to the place I am currently am.  Which is....navigating the referral process for a surgery that will hopefully cure me from Cushing's and save my life, but sadly will also leave me dependent on hormone replacements for the rest of my life.

Stay tuned this month to learn all about Cushing's and hear my story!

Living in the Unknown

I think one of the fears we humans struggle with the most is fear of the unknown.  I think it is the basis for things like racism and homophobia.  As humans, not knowing, is one of the hardest things to deal with.  Yet, as a Christian I believe that in this life I will never fully know, and that I am called to be at peace with not knowing.  I think in my life God has definitely used illness to teach and reinforce this principle.  So much of the past 15 years I have spent "not knowing."  From not knowing what was wrong in the beginning, to not knowing where to go for help, time spent waiting for test results and not knowing what will come next.  It is not easy, and like most lessons God has taught me throughout my life, I have to be reminded to be patient, to trust in Him and in His perfect timing.

Once again I find myself waiting, and sitting surrounded by the unknown.  I actually have a profound sense of peace.  Peace that God will be faithful in all things.  And while I wait for the wheels to be put in motion towards the next decision that will profoundly change my life I am reminded of something I heard once: while you are waiting for God to open the next door, continue to worship him in the hallways!  I feel like I have spent most of my life in dark hallways, but here I am with my hands lifted!

Truths I have learned through illness

Truths I have learned through illness

Psalm 139: 1-12

O Lord, you have examined my heart and know everything about me. You know when I sit or stand. When far away you know my every thought. You chart the path ahead of me and tell me where to stop and rest. Every moment you know where I am. You know what I am going to say before I even say it. You both precede and follow me and place your hand of blessing on my head.

This is too glorious, too wonderful to believe! I can never be lost to your Spirit! I can never get away from my God! If I go up to heaven, you are there; if I go down to the place of the dead, you are there. If I ride the morning winds to the farthest oceans, even there your hand will guide me, your strength will support me. If I try to hide in the darkness, the night becomes light around me. For even darkness cannot hide from God; to you the night shines as bright as day. Darkness and light are both alike to you.

Disclaimer: It is my belief that God did not make me sick, but this is what I have learned about life and God through my illness, and I think many of these truths apply to so many things in life not just the narrow scope of illness

1. God always finds you at your lowest point
   1. There are many times along my journey where I have wanted to give up, and some times where thoughts of suicide dominated my mind. But like the Psalm, there was no where I could hide from God. Even when darkness covered my life His light shined around me, and even though it was sometimes just the smallest hint I always felt His presence when I sought after Him.
2. God uses illness to both teach you and to bless others.
   1. Very recently after I had had to leave school and give up my job due to illness I was struggling, financially, emotionally, and physically. I was surrounded by many great Godly friends who wanted to help, but I had a hard time accepting that help. One day a very good friend sat me down and told me that I was being selfish and prideful by not allowing anyone to help me. I had never thought of myself as prideful before, I worked in social work, spent a lot of time volunteering, helped others...but she pointed out that by trying to do everything on my own I was not allowing God to work in my life through others, and I was actually denying them the blessing of being able to help me in my time of need. It was a profound lesson in my life that I know God taught me through illness, and through a friend who was bold enough to call me out. Accepting help is something I still struggle with, but God often reminds me of these moments in my living room that day, and I can feel my heart chnge.
   2. On the flip side of that, God has used my illness to put me into situations where I have been able to be a blessing to others. I get to interact with nurses and doctors on an almost weekly basis, and share my testimony of hope and peace through illness because I have Jesus Christ in my life. I have even been able to help strangers get the medical care they needed because I had just recently walked a similar path. I thought my ability to help people was over when I had leave medical school and social work, but I am continually amazed, although I know I shouldn't be, at the people God places in your life that you can be a blessing to just through the smallest of gestures.
3. Trust God
   1. With your finances, your resources, your health, your everything. Nothing you could ever accomplish on your own would eclipse what you are able to do when you turn it all over to God. When I was first being diagnosed the medical school held fundraisers to help me pay for the travel and testing I needed since I had no insurance while in medical school. The money that was raised was the exact, I mean exact dollar amount that I needed to pay for that initial trip and tests. There have been many occurrences since then where I have gotten random checks in the mail at exactly the time they are needed, or a day when my pain disappears and I have extra energy in order to do something special. When you give it all up to God, He will never cease to amaze you at the things He does in your life.
4. My energy is precious
   1. Living with a chronic illness it doesn't take long to learn all of the things you can no longer do. Where I used to be able to work 2 jobs and go to school, a good day now is getting dressed and making it through an entire trip to Walmart. I often feel bad that I have to tell my daughter that I am not up to taking her to the mall or going for a walk with the dog, but I have learned how to make the time we spend together deeper and more memorable. A day off school where she can cuddle in bed with me and watch movies; when I have to cancel plans because of health I try to do something at home like a mother daughter spa day. I have learned that instead of trying to cram more things into my day, I need to make the hours in my day MATTER more. I have also learned I don't have the time or energy for negativeness in my life, whether it is my own or other people's. I have learned to surround myself with the positive because if I only have a few good hours in the day I want to spend them in the best way possible.
5. Along those lines I have also learned to see small things in life as blessings and miracles
   1. During a chronic illness it is often hard to see the good things that are in your life. Actually I think this is a problem many people face no matter their situations. But when I lost my job, my cognitive function, my physical functioning, my friendships, and a list to long to enumerate to illness it was hard for me to see the good things left. Over the years, and through the help of friends and strength of God, I have learned to appreciate the things I can still do: get out of bed each morning, drive where I want to go, spend time with my family. I see blessings in small things like a day with no pain, being able to walk around the mall (even though I might pay for it later), long conversations with my daughter. And God has really opened my eyes to the miracles that happen in life all around us. I just had to learn to change my attitude and mindset to look for the positive in life, instead of dwelling and living in the NOTs and CAN'Ts and IMPOSSIBLEs.
6. My TRUE identity is in God
   1. Part of learning to live on the positive side of tings for me was learning to find me true identity. When you go to a dinner party and meet someone new you usually introduce yourself and tell what job you do: doctor, sales rep, homemaker. In the beginning for me though I lost two things that were paramount to my sense of identity, being a medical student and being a social worker. Besides just losing the title and a way to introduce myself, I lost friendships with co-workers, a sense of belonging, my sense of future, and really a sense of usefulness or purpose. I think of all the things that illness took away this led to the most depression for me. It took a long time for me to start to identify myself outside of a profession and see myself as God sees me. What were my good attributes, what was my purpose in life, one God-given that could never be taken away? I found that a lot of those things that made me who I was were wet led me to careers in the helping fields. I was not defined by job, but instead by the attributes of compassion, a desire to help and serve, patience. It is not often that we are essentially stripped bare in life and given the opportunity to examine ourselves intimately. By losing my sense of identity, God gave me the opportunity to truly find myself.
7. Lastly I think I will wrap up today with something I think we all know but often forget-Life is fragile
   1. None of us wants to be reminded that our time here on Earth is finite. That the number of days we have to spend with our families are limited, and that none of us knows the day or the hour when that time will run out. Well, living underneath the cloud of illness that fact is not often far from my mind. There have been times of medical crisis when we didn't know if I was going to make it through the night, out of the next surgery, live through the next few months. I am constantly aware of the fragile and temporary nature of life. It colors my every decision, every relationship, and even my time with God. Many years ago I came to peace with the fact that I may not get to live a long and healthy life. I thought I might never get married or have children, that those things weren't available to a young woman with chronic illness. But God in his awesomeness answered those prayers of my heart, and actually used the circumstances surrounding my illness to introduce me to my husband and daughter. Now I take advantage of every minute and every opportunity I have to make those moments count, because I don't know which one will be my last. I don't know if it will be sudden, or if I will get a chance to say goodbye. I try to remember not to hold onto anger or resentments, because I don't want those to be the last things my loved ones remembered of me. I pray daily that I will live to see my daughter graduate, get married, have children; that my husband and I can grow old together, and I never count God out that He may just grant these prayers too. But I was reminded just last night that life is fragile when my sister in law lost a good friend; a single 30 year old mother of a four year old little girl; who died suddenly, no notice, no goodbyes. And I actually thank God in those moments for the perspective that illness has given me: our time here is limited, learn to strip things from your day that are unnecessary, focus your energies on the positive, seek God daily especially in times of trouble, and love those around you like there is no tomorrow because it is not guaranteed.