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.     

Life's Unfair!

...but we all know that already.  Sometimes I feel like that line from Bruce Almighty, "God is a mean kid with a magnifying glass."  Ok, so I don't really feel that way.  But it sure does seem like some people have a disproportionate amount of bad things that happen to them, while other people seem to skate by in life while avoiding all of the potholes.  I try very hard to focus on the blessings in my life, and not the deficits; to be thankful for what I have and not covet things I don't.  But I am so far from actually achieving this ideal in my daily life, it is probably laughable to God.  I suffer jealously often, I am often depressed by thoughts of what I can't do, and I long for the things I can't have.

This has been magnified one hundred times lately as we have begun talking about adopting a child.  I came to peace with the fact that I would not have a biological child a long time ago.  But God has blessed me by bringing many children into my life, through friends, work, church, and now the beautiful girl I call my daughter who belongs to my fiancee.  However, I have always had a longing for a baby,  a desire for a large family, and a heart for children with disabilities or who were just tossed aside for whatever reason.  I would love to adopt.  I think I would make a good mom.  But as we have begun this journey I have come to realize that I might as well wish for a million dollars to appear on my dinner table tomorrow morning, that is about the chance I have of becoming a mother through adoption.

Many agencies have a marriage requirement.  They require couples to be married a certain number of years, and it one spouse has had a divorce that number is usually increased.  Well, Brian and I have been putting off our wedding for a year and a half because of health and financial reasons.  I guess in 5 years we will be good enough to give an orphan a loving and permanent home.  Don't get me wrong, I understand the need for rules like this.  These children have been through such upheaval and trauma in their short lives already, you don't want them to have to go through the distress of divorce.  But longevity is not a great indicator of marital bliss.

Well, regardless of if we had been married 10 years or not most agencies will not even consider you if you have had a major illness, currently have a chronic illness, have taken anti-depressants or been to psychological services in the past 2 years, or have ever had cancer.  So strike one, two, and three for me.  It was like a knife to my heart when I realized that the disease I have been fighting for the last 10 years, fighting to live, to have a family; may be what costs me from adding to our family in any way.

I see so much need out there.  So many kids in orphanages, group homes, in abusive situations, people who just don't "want" their children.  I believe I  could offer a loving home, I would love to raise a child of my own, however they made it into my home, but life is just so unfair sometimes.

Procrastination and Pain

I am a terrible procrastinator. Anyone who knows me would agree with this. I am a Pisces, I have huge ideas, and a room full of projects that were started and never finished. I am terrible about sitting down and writing, but I really want to make an effort with this blog. Even if only one or two people read my posts and are more informed about Cushing's then I consider that a success.

 I have felt for quite sometime that I have had a recurrence of Cushing's but I was told by my doctor that it was just taking my body longer than normal to recover from my Pituitary surgery. I even read a chart note that said "patient is unhappy with her life and is just looking for something to explain her problems." That really hurt, as I actually respected this doctor. So after that experience I resumed working with the specialist that diagnosed me in California.

 I have been doing scores of 24 hour urine collections, salivas, and midnight blood draws. My fridge has been full of orange jugs of pee and my freezer stuffed with vials of spit. My family loves it! It has finally paid off. Two weeks ago I had a phone appointment with my doctor and after evaluating my labwork he agrees that I am having a recurrence. I had hoped he would say let's move on to a BLA (bi-lateral adrenalectomy), where they remove your adrenal glands and you essentially trade Cushing's for Addison's. But unfortunately he felt I am "early" in a recurrence and he wants to try a medical approach first.

 I have been wary of trying a medical approach (it doesn't always go so well for people with Cyclical Cushing's). One of the local doctors in Arizona wanted to try a medical approach before my pit surgery but I would rather take the surgical option which has a chance of cure or remission than just suppressing the effects of cortisol with medication. But now I am at a place in my journey where I don't really have a choice. I take the medication and hope for the best or watch and wait as the Cushing's symptoms all return and get worse. Luckily I belong to a wonderful support group of amazing people who gave me lots of great suggestions for starting this medication, Ketokonazole. And I am also surrounded by a wonderful faith community who is lifting me up in prayer. So far (3 days into it) I have only experienced some mild nausea and fatigue, and a slight increase in my chronic pain. I am expecting it to get worse as this week I only started out at half the prescribed dose, so ask me next week how I am doing.

 So what is the plan? I am going to take the Keto, keep putting one foot in front of the other, and hope that either my neurosurgeon sees a surgical target (new tumor growth) on my most recent MRI, or that my Endo decides my case finally meets the criteria for a BLA. I just pray for the faith, strength, and trust in God to just walk my path with an attitude of gratitude each and every day.

The List

10 15 20 Things Cushing's has stolen from me (in no particular order):

1. My youth
2. My independence
3. My girlish figure
4. My memory
5. My identity
6. Time
7. My health
8. Money
9. Freedom
10. The ability to have children
11. A normal life
12. Sanity
13. Relationships
14. My IQ
15. Sleep
16. Physical strength
17. Stamina
18. My hair
19. My ability to enjoy food
20. My life....

Cushing's Awareness Challenge Day 3: Educate yourself and save a life!

Cushing's Awareness Challenge: Day 3

One of another wonderful thing about chronic illness is that when you have to get into your hidey hole because there is a tornado coming towards your house you have to make sure you have 1.) all your medication, 2.) emergency medication,s 3.) medic alert information, 4.) water (to take said medications), 5.) oh and everything else you are supposed to have in your emergency preparedness kit! Just one more way Cushing's livens up my day. Now back to my hidey hole...see everyone tomorrow!

My Story

Day 2 of the Cushing's Awareness Challenge: My story

I was 13 when I first started having medical problems, although it would be over 10 years before I would ever hear the word Cushing's. When I was in junior high I started having severe headaches and GI issues. My pediatrician told my mother that the headaches were because I didn't drink enough water, and my stomach issues were from drinking too much soda. (Even though neither of these were problems for me we doubled my water intake and eliminated like the one soda I was allowed to drink a week). The headaches and stomach issues continued. Then in high school I developed cysts on my ovaries. The doctor's explained to my mom that this happens sometimes and at 15 they started me on birth control to try and prevent the cysts. It didn't work.

I went away to college when I was 17. I was doing really well, but I began to gain weight. I was just about 100lbs and 5'4" when I went to school, so everyone attributed the weight gain to the dreaded "freshman 15." Over the next three years my weight would balloon up to 180lbs, I would develop high blood pressure, off the charts cholesterol, and I had a new infection every few months. I saw campus doctors for all sorts of ailments but the thing that finally got my parents involved and had me sent home from college was a psychotic break, essentially. I was placed on a student's in crisis plan my junior year and sent home for treatment.

I was diagnosed as being bi-polar and for the next 5 years I would go through medication after medication to treat the anxiety, depression and sometimes psychosis, but nothing really worked. And when I would complain about other ailments, fatigue, muscle weakness, infections, headaches, pain, weight gain; all of it was dismissed because I had been diagnosed with a mental illness.

After a few years I got into a routine and learned to live with all the symptoms I was experiencing. I saw so many doctors to try and figure things out but either they didn't believe me or they couldn't help me. Eventually I was accepted into medical school at the age of 25, something that had always been my goal. I had been doing fairly well, but the stress of medical school and the long hours and constantly being surrounded by sick people sent me spiraling into a tailspin medically. When we learned about Cushing's in class a lightbulb went off for me. I had nearly every symptom that was a hallmark of the disease, and I actively started seeking out an Endocrinologist.

It would take me two years and 4 Endos before I would get a confirmed diagnosis, and another six months after that before I made it to surgery. There were many times I wanted to give up. So many doctors, friends and family who told me I was crazy, lazy, depressed, attention seeking, or that it was all in my head. Well, it turned out it was. I had a pituitary tumor causing Cushing's Disease, which is what was causing all of my symptoms. If I had not been like a pitbull in pursuing a diagnosis I might not be here today. That is why Cushing's awareness is so important to me. There are many people out there undiagnosed, and I hope by bringing attention to this disease that people will find help like I did.

Cushing's is no joke!

Today is April Fool's and the first day of my 30 day blog challenge. I am going to write a post everyday for the next 30 days talking about my life with Cushing's. And while I love a good joke, and especially a good prank (as long as I am not on the receiving end), Cushing's is no laughing matter.

Cushing's Syndrome is caused by an excess of cortisol and can be caused by tumors on the adrenal gland, tumors on the pituitary gland (which is specified as Cushing's Disease), ectopic tumors, or exogenous use of glucocorticoids.

Symptoms of Cushing's Syndrome include:
-Rapid weight gain (especially around the abdomen and in the face)
-Distributions of fat specifically around the collarbone and at the back of the neck (supraclavicular fat pads and buffalo hump)
-Purple or red striae (stretch marks)
-Thinning of the skin
-Easy bruising
-Acne
-Proximal muscle weakness
-Excessive sweating
-Hair loss
-Hirsutism (growth of facial hair)
-Insomnia
-Reduced libido
-Amenorrhoea (cessation of menstrual periods)
-Psychological disturbances (anxiety, paranoia, depression, and psychosis)

Cushing's can also cause:
-Hypertension
-Hypercalcemia
-Insulin resistance
-Diabetes mellitus
-Heart disease

And without treatment Cushing's Syndrome can lead to DEATH!

It took 10 years, but I was lucky enough to finally get treatment. I am still sick and still fighting this battle but at least I have allies now. Education about this disease is so important, so if I reach even just one person in the next 30 days then this adventure in blogging will be worth it. Cushing's Syndrome: Get Educated, Save a Life!!

Moving sucks!

I don't know anyone that likes moving, especially the packing part. I hate it, always have. But having a chronic illness makes all the frustrations, difficulties and headaches of moving magnified by a hundred. And to make things even worse I am doing it alone. This is the first time my parents have not helped me pack and move. (I know I am 32, but you gotta love family. It is cheap help!) And my fiance is already in Dallas because his job there started a month ago. So I am left with an 11 year old and a dog, which more times than not are way more trouble than help.

It takes me about one hour to sort through and pack just one box. Generally that one task leaves me so exhausted that I need to rest for about 2 hours. And then after a morning of packing, cleaning, sorting, etc. I need a few hour afternoon nap just to be able to function! I am 32 years old I should be whipping through this, even though the work sucks. But instead my body is that of an 80 year old, and I am extremely limited in function. I actually look forward to a day when I can pack my house and move without pain, fatigue and everything else that comes along with being sick.

The last two years...

I have decided to accept a challenge to blog for 30 days straight about health, illness and the impact these issues have had on my life personally. So when I logged into my blog and realized it had been almost two years since I had written anything I was pretty sure that I was not going to make it a whole 30 days. But I am determined to give it a shot.

I have spent the last two years fighting Cushing's Disease. On April 7th, 2010 I had Pituitary surgery to remove a tumor causing Cushing's disease. I had high hopes that this would be a one shot cure for me, but like so many other things in my life this hasn't worked out quite like I planned. Two years later I am testing for Cushing's again, and I am just as bad off as before. Except, because of my illness I met the love of my life and his wonderful daughter. And when I thought I would never have things like marriage and children in my life I am now a mother to a beautiful young lady and I am planning a wedding.

I can't promise that this will be the most interesting or witty blog; or that I will have amazing life changing insights, but I encourage you to take this journey with me for 30 days in April as I attempt to bring awareness to Cushing's Disease in particular and illness in young adults in general.

For more information on Cushing's Disease visit: http://www.cushings-help.com/
For more information on cancer in young adults visit: http://www.masskickers.org/

I'm leaving on a jet plane....

Ok, so it is not even close to a jet plane...it is a U-Haul truck and my 2004 red Hyundai Accent with 75,000 miles on it, previously having survived annihilation. It is a two day trip across the southern US with a drugged dog, my mom driving exactly the speed limit, and hours of Gordon Lightfoot and Simon & Garfunkle. (I hope I make it!)

I pretty much have just a couple more days left in Tucson. I don't know why it is so upsetting for me to leave, when I had no plans of staying here in the first place. My goal was get in, get out. I came down for one purpose, and as soon as that was fulfilled I was on to greener pastures. Maybe the leaving is bittersweet because I did not fulfill my goals; I failed at what I came here to accomplish. Sometimes I feel like leaving means finally, completely giving up on my dreams. But life here has been more nightmare than dream, so I think maybe that is misguided logic. I know leaving is hard because finally I have made some friends here, and found a community I fit into. I have never made friends easily, and I don't fit well into group dynamics. I enjoy solitude, and am easily annoyed by others; but for some reason I have found a group of people that I like, and I think they tolerate me pretty well. It is going to be hard to find anything that mirrors this anywhere else. As I write, I can't even think about leaving some of my friends without tearing up. It feels like a big open wound in my chest, that I am not sure how I am going to mend.

But you always have to look on the sunny side of life, right? So I guess I will call this an adventure, or maybe a social experiment. How does a liberal, feminist, Christian fare in the Southern Bible belt? Well, at least I get to spend my mornings looking out over beautiful acres of forests and valleys while deer and their babies munch grass, bunnies hop by, and birds fight with the squirrels for sunflower seeds. Ok, so it sounds like somewhere Snow White would live. As long as there are no woodsmen out to cut out my heart, I think it should be a great place to find physical, emotional and spiritual rest. A place where I can refocus my life's goals and try to remember what is really important in life; family, friends, making memories that help sustain you through the rough times.

I don't want to leave Tucson; it was a decision I made, but not a choice. And I don't want to stay here because I love the city of Tucson, but because I love the people in my life here! But sometimes you just got to do what you got to do. I hope I can take all the happy memories that Tucson has given me along for the ride, and leave all the pain, failure, and stress behind.

Thank you Tucson for the good and bad times; I hope I am leaving here a better person for it.

Random musings trying to pass off as poetry

Invisible
I used to have colors that burned bright as the sun. People would look at me, and my colors would shimmer off of them; light reflecting light.
People wanted to be around me. I had bounce in my step, and when I stepped I never looked back.
I was not the center of anyone’s attention, but there was attention in my life.
I wanted to be the best, but I did not need everyone else to think I was.
I was going somewhere, and people noticed.
I could fly by the seat of my pants; I mean I could really fly. I thought the sky was the limit, and I wasn’t ready to stop there.
Then one day I fell. And I didn’t shine like I used to. The brightness of my colors did not touch anyone else; I was fading. I was stealing other people’s light.
I was not the center, the periphery, or on the radar, of anyone’s attention.
My colors disappeared until you could see through me, all my life was just background.
The bright blues of the sky and brilliant yellows, oranges, and reds of the sun were gone.
No one looked my way anymore, and if their eyes happened to pass over where I was, they wouldn’t see me. I was invisible.
I stopped looking too.
I could no longer see myself, and my eyes went dark, so that I could not see any light at all.
All that was left was darkness and silence.
Invisibility is lonely.