Cushing's Awareness Blog Challenge 2013 - Day 18

While I was being diagnosed with Cushing's Disease and going through months of testing, I was also training to run my first half marathon. In December of 2012, I flew to Las Vegas and ran the "Strip at Night". Keeping in the back of my mind that I could have Cushing's and I could have a pituitary tumor, I did not let that hold me back. I wanted to finish that race and prove to myself that anything is possible. I put a lot of hard work into training for the half marathon that I just couldn't let myself down.
It was just a few days after returning home that I had my MRI scan which revealed the tumor on my pituitary and once I figured this out and met with my Neurosurgeon, I knew surgery was just around the corner. I had to mentally prepare myself for this as I knew I had a long road and journey ahead of me.
The end of February 2013 is when I had my pituitary surgery and they removed the tumor. Knowing this is somewhat of a relief, but keeping in mind I will still be monitored closely.
I have been told to return back to life as if normal, although a lot easier said then done.
I registered for a number of races this summer, two which are half marathons. I did this because I want to prove to myself that anything is possible and also this gives me something to work towards. Now that I have been cleared by my doctor to return back to normal I have slowly started doing small work outs, walking and a little bit of swimming.
Yesterday, I went for my first "run" and let me tell you. It was probably the hardest thing (emotionally) for me to do. I could barely run a block without feeling exhausted. This is quiet the change considering 5 months ago I ran a half marathon.
I realize that I am still healing emotionally and physically and I have a long road ahead of me, and I also realize that things just cant change over night. This being said, I will admit this is extremely difficult to deal with. This is really upsetting for me but I do understand that its hard for others to understand as most people don't realize how hard this journey is emotionally. Physically it is exhausting and clearly everyone can see what impact it has on a person but the one thing is the emotional side. There is a lot more behind this disease that no one can see.
I am writing about this because I don't want anyone to give up on their dreams, as I will not give up on mine! I will work hard towards my goals even tho I know they may take longer then they should, I will succeed...
If your suffering from Cushing's or any other disease, or even if your healthy...
Believe in yourself and never, ever give up!

Dream big! <3

Cushing's Awareness Blog Challenge 2013 - Day 17

I'm about a week behind!! I went away for the weekend and got a little side tracked with some wedding activities!! :D

Anxiety

 

My journey with Cushing's Disease has had many ups and downs. There were days where I didn't think I could handle it anymore, and days that seemed so easy. Well I guess truthfully no day was really "easy", I seemed to be facing some kind of battle each day. Like I have said in previous posts... In ways I am Thankful to be dealt this card. No one wants to be sick but I believe only those who can handle it are given the battle to fight.

One side effect that I have been fighting for a long time is anxiety. Some people who suffer with Cushing's Disease also suffer with anxiety.

 

Anxiety: Also called angst or worry, is a psychological and physiological state characterized by somatic, emotional, cognitive and behavioural components. It is the displeasing feeling of fear or concern. The root meaning of the word anxiety is 'to vex or trouble', in either presence or absence of psychological stress, anxiety can create feelings of fear, worry, uneasiness, and dread. It is also associated with feelings of restlessness, fatigue, concentration problems, and muscle tension. However, anxiety should not be confused with fear, which is more of a dreaded feeling about something which appears intimidating and can overcome an individual. Anxiety is considered to be a normal reaction to a stressor. It may help an individual to deal with a demanding situation by prompting them to cope with it. However, when anxiety becomes overwhelming, it may fall under the classification of an anxiety disorder. As mentioned earlier, anxiety can be confused with fear. However, fear is concrete, (a real danger) whereas anxiety is the paranoia of something out there that seems menacing but may not be menacing, and, indeed, may not even be out there.

 

I copied the above definition from the internet just so there would be a better understanding of just exactly what anxiety is. To me anxiety is one of the scariest things I deal with on a daily basis. It's something that I can not control, and trust me if I could control it... I would. It is one thing I really wish I could grab a hold of because it is something that doesn't only effect me but it effects everyone around me. The constant worrying, crying for no reason, panicking over stuff that really isn't even happening. There is no reason that anyone around me should have to deal with this.

 

In my process of recovering from surgery I am trying to make myself healthy again as well, eating healthy and dealing with weight loss. Anxiety is also something that I am hoping to overcome.

 

:)

Cushing's Awareness Blog Challenge 2013 - Day 11

Cushing's Awareness Blog Challenge 2013 - Day 10

Cushing's Awareness Blog Challenge 2013 - Day 9

Understanding the Battle...

 

The battle has got to be the hardest part about having Cushing's Disease. Everyone around you thinks its just that easy, the tumor is gone and now everything should go right back to normal. Well NO!!! Absolutely not.. I almost feel worse ever since the tumor has been removed. I know that its going to be a long road and eventually everything will go back to normal but in time. Everything takes time and its not just going to happen over night. I'm still healing and I'm still trying to balance steroids, and when the times comes to make a change its going to take A LOT of work. A lot of determination! I am determined to make a change, to make a difference and get my life back but I just think its important for me to tell everyone that its just not that simple.

I guess this is just me letting out frustration, its frustrating when people look at me different. I don't want to look the way I do, but I got blessed with this "ugly" disease and its just something that I'm going to have to deal with.
Try, just try for one second to walk a mile in my shoes and experience everything I've been through and then tell me its easy!

I will get through this, I'm determined!!

I will beat Cushing's Disease but it will forever be a part of "me" and who I am.

I will show the world that just because a disease made me "ugly" doesn't mean I'm not beautiful on the inside, we're all beautiful on the inside. You just cant see it.

And trust me.. I will also show this "ugly" disease just exactly what UGLY is.

 

Bring it!

 

 



Cushing's Awareness Blog Challenge 2013 - Day 8

 

 

 

 

HAPPY BIRTHDAY  DR. HARVEY CUSHING!!!

 

Today is Cushing's Awareness Day!! Wear your ribbons, cushing's colors (Blue and Yellow) and t-shirts to spread awareness about this rare disease. Get talking to anyone who will listen!

Today is not just the only day to raise awareness, everyday is a good day!

 

Dr. Harvey Cushing was an American neurosurgeon. A pioneer of brain surgery, he was the first person to describe Cushing's syndrome. He is often called the "father of modern neurosurgery".

 

To read more about Dr. Harvey Cushing please visit:

 

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

 

From one Cushie to another... Happy Cushing's Awareness Day!!



Cushing's Awareness Blog Challenge 2013 - Day 7

Why I'm Thankful?!

 

 

There are so many reasons why I'm Thankful for this whole experience. It is something that is going to be part of my life forever.

It's not that I'm thankful for having a disease, I am Thankful for what it has taught me. It has been about 5 months since my diagnoses and I have been on a rocky road ever since, but I have learned so much along the way. I have learned not to judge others, you never know what's happening to them underneath everything. You don't know why they look the way they do, or walk the way they walk. I have learned who truly is there and who is not. I have learned the meaning of LIFE!!!

 

Life is something that I think we all take for granted at some point in our lives. Its something we are so lucky to have. Everyday I am so Thankful to wake up and I am so Thankful for everything life has given me.

 

I'm Thankful for friends.

I'm Thankful for family.

I'm Thankful for LOVE.

I'm Thankful for life.

 

There is so much to be Thankful for!!

 

Thank You!

Cushing's Awareness Blog Challenge 2013 - Day 6

Yikes!! Due to the weekend, I'm a couple blogs behind!

MRI

 

An MRI played a large role in my diagnoses of Cushing's Disease, it was an MRI machine which found the tumor growing on my pituitary gland.

 

MRI (Magnetic Resonance Imaging) is a medical imaging technique used in radiology to visualize internal structures of the body in detail. MRI makes use of the property of nuclear magnetic resonance to image nuclei of atoms inside the body.

 

An MRI scanner is a device in which the patient lies within a large, powerful magnet where the magnetic field is used to align the magnetization of some atomic nuclei in the body, and radio frequency magnetic fields are applied to systematically alter the alignment of this magnetization. This causes the nuclei to produce a rotating magnetic field detectable by the scanner, and this information is recorded to construct an image of the scanned area of the body. Magnetic field gradients cause nuclei at different locations to process at different speeds, which allows spatial information to be recovered using fourier analysis of the measured signal. By using gradients in different directions, 2D images or 3D volumes can be obtained in any arbitrary orientation.

 

MRI provides good contrast between the different soft tissues of the body, which makes it especially useful in imaging the brain, muscles, the heart, and cancers compared with other medical imaging techniques such as computed tomography (CT) or X-rays. Unlike CT scans or traditional X-rays, MRI does not use ionizing radiation.

 

 

 



 

 

 

 



Cushing's Awareness Blog Challenge 2013 - Day 5

Pituitary Gland

 

 

The pituitary gland is an endocrine gland about the size of a pea, weighing about 5 grams. It is located at the base of the brain and rests in a small bony cavity covered by a dural fold. The pituitary gland secretes 9 hormones that regulate homeostasis. The pituitary gland is made up of three lobes: anterior, intermediate and posterior.

 

The anterior pituitary synthesizes and secretes the following important endocrine hormones:

Growth hormone

Thyroid-stimulating hormone

Adrenocorticotropic hormone

Beta-endorphin

Prolactin

Luteinizing hormone

Follice-stimulating hormone

Melanocyte-stimulating hormone
These hormones are released from the anterior pituitary under the influence of hypothalamus. Hypothalamus hormones are secreted to the anterior lobe by way of a special capillary system.

The posterior lobe develops as an extension of the hypothalamus. The posterior pituitary stores and secretes the following important endocrine hormones:
Oxytocin
Antidiuretic hormone

Hormones secreted from the pituitary gland help control the following body processes:
Growth
Blood Pressure
Some parts of pregnancy and childbirth
Breast milk production
Sex organ function
Thyroid gland function
Metabolism
Water regulation
Water balance
Temperature regulation
Pain relief

Cushing's Awareness Blog Challenge 2013 - Day 4

How I found out I have Cushing's...

 

WEIGHT! It's pretty much that simple.

 

I started dating my boyfriend in November 2009, I never really thought much of my weight as I weighed 135 pounds and have always been around that weight. I was always active but never really worked out and could pretty much eat whatever I wanted.

This was one of my more serious relationships and we pretty much started living together right from the beginning. About a year later I started putting weight on but I mean I just blamed this on being in a "comfortable" relationship. You always hear about people starting relationships and putting on a little bit of weight and well I guess I just thought this was normal. I did start to get a little concerned so I started working out and then over the next two years I was on and off with personal trainers and even diet coaches. I would lose motivation at times but I would get right back on track. It was 2012 where I noticed the most weight gain and the summer of that year I started training for a half marathon where I figured if I ate right I would lose the weight for sure. This was complete oposite and I knew there was something wrong. Despite all the training, I was still gaining weight.

Meeting with my Endocrinologist changed my life forever. I originally met up with her so she could properly teach me about portion sizes but she knew there was something up. She started doing all kinds of blood work and urine test and sure enough in December 2012 is when I was officially diagnosed with Cushing's Disease. My cortisol levels were through the roof and an MRI confirmed a tumor was growing on my pituitary gland. I also have a lot more side effects (most of the ones that come with Cushing's), but weight is the one that really stood out for me.

Cushing's Awareness Blog Challenge 2013 - Day 3

Neurosurgeon

 

Neurosurgery is the medical term used in the prevention, diagnosis, treatment and rehabilitation of disorders that effect a portion of the nervous system. This includes the brain, spinal cord, peripheral nerves and extra-cranial cerebrovascular system.

 

A neurosurgeon played a very large part of my Cushing's Disease experience. My Cushing's was a tumor growing on my pituitary gland, it was this tumor that was causing so much stress in my life and so many problems. By removing this tumor, it gives me a chance to get my life back and hopefully I can live a new life Cushing's free. Without the help of a Neurosurgeon none of this would be possible. My experience with my Neurosurgeon was nothing but amazing, there are no words to explain how Thankful I am to have someone like him in my life. His confidence alone is something I am so grateful for.

I had my first follow-up appointment with my Neurosurgeon today and he says everything is looking great. His final words were "Continue to live your life as if nothing ever happened!". It was so amazing to hear this, to hear how simple it was for him to say it. I could tell that he really enjoyed his job and it made him happy to be able to help others.

I hope everyone dealing with Cushing's Disease gets the privilege of having a Neurosurgeon as amazing as mine.

 

Here's to a new me... Thanks to my Neurosurgeon!

 

:)



Cushing's Awareness Blog Challenge 2013 - Day 2

There is no real way to describe how devestating Cushing's is, here are some words to help describe the "cloud" I have been living!

 



Cushing's Awareness Blog Challenge 2013 - Day 1

Cushing's Disease Awareness

Why I decided to take part in the Cushing's Awareness Blog Challenge?...

For the past 3 years I have been stuck in a world of wondering, this has got to be one of the worst feelings. Always wondering why?? or whats wrong?? Searching for an answer I just couldn't find.

So many tests were done and just always mistaken for something else, who would have ever imagined a brain tumor. It is such a rare disease that is often mis-diagnosed so participating in this challenge I hope to educate others of Cushing's Disease and maybe save the next person years of grief.

It is something awful, but it is something awful that has changed my life in many many ways. In a strange way I am Thankful!! I believe I was given this "bump in the road" because I could handle it. I believe I was given this so I CAN educate people about Cushing's. I believe I was given this for many reasons. It has made me a stronger person and still this is all new to me as it is a learning experience for me as well. I still have so much to learn about this myself and I will continue to grow and I continue this journey.

Now follow my blog for the next month so we can learn together as a group...

I am on the road to a fight against Cushing's Disease and if you are to I would love to hear your story, so please contact me at: mylifeasacushie@gmail.com

Looking forward to hearing from all the other "Cushie's" out there and following their blogs as well this month!!

From one Cushie to another... Lets stay strong and fight this horrible disease together!!

Happy Cushing's Awareness Month!!