Day 5: Cushie Stories -- share your before and after photos

When I first started my blog in June 2009, I went through the painful process of posting photos that showed how Cushing's and high cortisol has changed me.

You can see the original post here.

So much has happened in the years. I will be working to collect some additional before and after photos to depict my life since my Cushing's discovery.

Will you help me help others by making one of yourself, too?

I'm working on a video presentation that will include these photos of Cushing's patients before Cushing's, during Cushing's, and after treatment for Cushing's. If you would like to participate, send your photos to me via email at moxiemelissa (at) gmail.com. I will compile submissions through the end of April. Those I receive before the month's end will be included, so please be sure to send them in soon. I have big plans for this presentation. I will share more in the coming year.

In addition, if you want to write your whole story up and include photos, please send it to me to the same email address. I want to share all kinds of stories from all kinds of Cushies, so please send me something so I can share with our community.

Take care. 

Moxie

It's Cushing's and Adrenal Insufficiency Awareness Month!

Day 1: It's Cushing's and Adrenal Insufficiency Awareness Month

772,998 page views.

WOW!

2016 not 2015. Mistake from a Cushie Mind.

I can easily say that when I started this blog eight years ago that I had no idea how far my typed words would go. At the time, it was my little place to put down my knowledge about a disease that plagued me but also a space to share my frustration when I didn't have anywhere else to put it.

I look back at the 510 posts I have made, and I have mixed emotions.
  
I stand proud that I have a collection of myself that I can share with all of those who seek understanding and assistance tackling a monster of a disease as well as a medical community that claims to have never encountered that beast before.

I am happy that my work has helped so many people that my eyes overfill with joy when an email (moxiemelissa atsign gmail dot com) comes through thanking me for maintaining this blog and saving a life.

I feel accomplished that I put so much work into a blog even when I wasn't feeling well. I posted many times from my iphone because sitting upright hurt my back and joints too much. I often lost sleep and time with my family so that I put up content in an never-sufficient-effort to save people from this destructive disease. I felt a huge responsibility to keep posting. 


Among these many posts, I can't help but notice all that I didn't say. I see gaping holes of my life story that I never posted here.  

• I was too sick to type.
• I was too disappointed to share.
• I was not with it enough to formulate sentences and cognitively too confused to make sense of lab results and doctors appointments.
• I didn't know what to do to cure this disease or even help myself. Many times, I was just too hopeless to share. 

Putting the disappointment I was facing right here on this page was so overwhelming that I just couldn't do it. If I wrote it down, it would really be as bad as it was when it all swirled around my mind.  In those times, I remained silent. My social anxiety heightened, and I clammed up. I tried to scrape together a life with whatever leftover energy I had left after the grueling fatigue -- I can assure you that there wasn't much left. I would try to forget Cushing's and I got caught up with the daily rhythm of school for my child, work for my husband, cleaning and cooking and sleeping. Every day I knew that anything expected of me other than sleeping was too much for me to handle.  Cleaning and cooking just never seemed to happen. Cushing's rang in my ears, literally, thanks tinnitus common with pituitary tumors, and reminded me every day what I had and what I tried to escape. Endless doctor appointments, scans, lab work, and daily medicine never let me forget that I was in the middle of a war against my own body.

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This isn't the most uplifting start to a month of awareness, but it's a start nonetheless.

My goal simply is to finish the awareness challenge, because there were years in the past when I just couldn't. I have no idea what I will articles, opinions, or stories I will share in the coming 30 days. I hope you stick around to see what happens!

Day 1: Cushing's Awareness Month Bloggers Challenge

Cushing's Awareness Month:

Bloggers Challenge

Day 1

Here we are again on April 1st. I join my fellow Cushies in blogging for the 30 days of April in an effort to bring awareness to our disease, Cushing's.

On March 28, 2007, I first saw the word Cushing's while researching thyroid doctors in San Antonio, Texas. Within minutes, I knew the word applied to me. I diagnosed myself with a rare disease on the Internet. I could hardly believe it, and none of the doctors believed it.

These past eight years have been filled with some of the darkest moments of my life. At the time, I wondered if I could make it through the next five minutes. Somehow, I endured the medical challenges before me. I faced disappointment and delay. I have been dismissed and dismayed. I have been tenacious and stubborn in fighting for myself, for what is right.

I admit to being stubborn, refusing to give up the fight when I know the fight is important.

Recently, I have learned to make peace with my disease. No matter what anyone says, you don't get ill and make peace immediately. Peace and uncertainty don't mix. You can't face devastation and immediately say, "Oh well. I guess this is my new normal, and it stinks. There is nothing I can do about it." No no no. That is settling for less than you deserve.

Peace comes with accepting the dire consequences of your disease, facing and befriending death as well as life, and still choosing to walk that line every day with a full heart and the stubbornness that won't let you give up or let Cushing's win.

I strive for peace.

I am 15 months post op BLA, or bilateral adrenalectomy for those with a lot of time on their hands for extra words. 

Another year has gone by. Cortisol is as much a part of my life as ever. Instead of cursing pituitary tumors for high cortisol, I scramble to take my cortisol medicine replacements three times a day. The irony is not lost on me. 

In the coming days, I will tell you more about my life after BLA, and how I navigate this stressful world with no adrenal glands. It's not easy (hint: I take a lot of naps).

I hope that you will stay tuned and learn a little more about the nuances of these cortisol-based diseases of Cushing's (too much) and Addison's (zero). In order to survive, I must understand both.

Sincerely,

Melissa

Cushing's warrior and advocate. 

Pituitary surgery for Cushing's in 06/2009 unsuccessful. 

Pit surgery for Cushing's in 04/2011 unsuccessful. 

Took ketoconazole and suffered through adrenal insufficiency for 14 months. Drug banned in European Union. I stopped postponing my life and chose to get rid of high cortisol.

BLA 12/31/2013 successful. 

I'm fighting to get my life back, and I will win.

After gaining 120 pounds in 1 year, rare diagnosis saves man's life

Cushing's was featured this morning on the Today Show's Medical Mysteries three-part series. 

Hooray for national exposure for Cushing's!

Donelle Trotman, a father in his 30s, suddenly and unexpectedly gained 100 pounds in a year as well as experiencing strange symptoms.

Donelle shares our desire to spread the word and increase patient awareness about his diagnosis. Read the story and watch the video to see yet another example of how devastating Cushing's can be.

We thank you, Donelle, in joining us as a Cushing's Crusader. We wish you all the best in your healing process. Please contact me if I can help you in any way. 

"There was no time to lose: Untreated, Cushing's is a fatal disease."

“The tumor was no bigger than the size of the tip of my pen," Boockvar said. "And that something so small can cause a man to grow to 350 pounds and absolutely destroy his life is rather remarkable."

http://m.today.com/health/after-massive-weight-gain-cushings-disease-diagnosis-saves-mans-life-2D80527683

Day 21: Magic Foundation hosts Cushie Convention

A patient with Cushing's often travels a long and lonely road to diagnosis. Surrounded by friends and family who mean well but don't quite get it, a Cushie longs to connect with others who knows what it is like to fight while living with  Cushing's.

Well, here's your chance!  

Many Cushing's patients attend the annual Magic Foundation convention. While the Magic Foundation is known for advocating for children and adults with growth hormone deficiencies, they also have Cushing's patients at the MAGIC Foundation.  Stacey, the group's moderator, shares her personal story about Cushing's.

Anyhoo.

MAGIC offers an educational program for adults who are affected with Growth Hormone Deficiency and/or other endocrine disorders.

2012 - The 7th Annual Educational convention for Adults with Pituitary Discorders

The  

MAGIC Foundation 

presents: 

The 7th Annual Convention  

for Adults with  

Pituitary Disorders  

Including:

Adult Growth Hormone Deficiency  

Panhypopituitarism 

and Cushings!

Thursday - Sunday 

July 19-22, 2012 

The Westin Lombard   

Yorktown Center 

Lombard, Illinois

Westin Hotel in Lombard
(subdivision area of Chicago)

Chicago, Illinois

Click through for convention program and online registration form.

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Enjoy the fun. I won't be able to make it this year, but one day I promised myself, I will. It's too good of a party to pass up.