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Just My Luck!

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I started 2014 thinking that it would be “The Year Of No Complaints” for me. So far, it’s pretty much panned out that way, but my only real complaint stems from this elephant in the room / on my stomach that is Cushing’s Disease. It just won’t seem to leave my life in a timely fashion.

Max & I

The Year of No Complaints

To give you an update, the last time I wrote, I had just returned from a successful trip to Shands, wherein I was referred to Emory to see a “specialized specialist.” Turns out that Emory’s person of that description is not what they say she is on paper/their website, and it took her 5 weeks to determine that my case was “too complicated” for her. The office manager for Emory’s Neuroendocrine Pituitary Center told me that they “really wanted to help me,” but perhaps I should check out the Pituitary Network Association’s website to find a legit doctor. So that was disappointing, and it was also in December, so then I basically had to start over in finding a new specialist.

Over the last few years, I’ve had bizarre luck with endocrinologists and the technology that is the internet. In my mind, a doctor’s office should ensure that the patient receives care, and should never tell him/her to use the internet as a means of finding their own treatment. My first treating endo told me to google my surgery options, now Emory (Emory!) tells me to use the internet. It’s fine that they didn’t feel comfortable in handling my case, but you’d think they’d know of someone who could…am I that much of a medical anomaly?

With a little help from my newly reassigned case manager (thank some higher power for her!), I was able to get in as a new patient at the Cleveland Clinic of Florida, to see a great endocrinologist. He’s the head of the department at the Cleveland Clinic of Ohio, but travels to Weston, FL 1 day/month to see patients. I was on the books for January 20th, but got a call a few days before saying that the doctor was sick and wouldn’t be able to make it. And since I’m a new patient and need a longer appointment time, I couldn’t be rescheduled until March 17th. Just a little bit of a setback…

But then I got a call saying that the doctor will be spending an extra day to see patients during his monthly trip in February, so I’m scheduled for Tuesday, Feb. 18th. Cross your fingers that this appointment will actually happen, as the new doctor is “delighted” to take on my case! That’s reassuring and gladly welcomed after many months of doctors seemingly not giving a shit…it’s not a good feeling.

I’ve learned to be extremely patient in having this disease, as things rarely go as planned. When told in late October that I needed my adrenals out sooner rather than later, I went into panic mode. In theory, I should have already had my 5th surgery, but I haven’t even been in for a consultation yet. It’s only my life on the line here, no big deal. To make light of the situation, one of my good friends sent me this lovely little stuffed kidney with a homemade party hat on top. The party hat signifies an adrenal gland, as I often refer to the adrenals as “kidney party hats”:

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I’m a stuffed kidney, look what I can do!

So besides having Cushing’s, which I hopefully won’t have for too much longer, my year is off to a great start. I was able to spend the holidays with my wonderful friends and family from in and out of town, so that was truly special and a nice way to transition to 2014.

I came up with some 2k14 goals, and they are as follows (in no particular order):

Spend more time with loved ones:

This lady is my rock!

Get up in time to watch the sunrise (on occasion):

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Sunrise at Cedar Key

Read more:

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Gotta step up that happiness factor!

Step up my crafting game:

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I hopped on that Washi Tape train. Choo choo!

Eat delicious/nutritious/meaningful meals:

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Miso hungry.

Spend more time in the great outdoors:

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Is it a turd or is a manatee?!

Maintain my sense of humor:

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Apparently, the Michelin Tire Man is my long-lost brother.

Beat Cushing’s Disease:

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Why so serious?

As always, I thank everyone for their continued love and support. This will be my year to shine – oh yeah – I’ve already made it big time, as a feature on totalbeauty.com. Thanks to a talented writer I know from back in the day, my message about Cushing’s is making it’s way in the world:

http://www.totalbeauty.com/content/blog/cushings-disease-140129

Kicking Cushing’s To The Curb,

Laura


15 Comments

  1. Melissa Addison says:

    Gorgeous, beautiful and uplifting as always, Laura. You rock and inspire me.

  2. Trinh Tran says:

    You are gorgeous girl ! Keep smiling!

  3. Michelle says:

    Please please email me. I’ve had cushings since I was 16. 2 brain surgeries, same radiation and halo, medication and finally BLA. Your words sounded exactly what I’ve said for years and it’s great knowing I wasn’t alone in my thoughts now.
    Mbarlowk@gmail.com

  4. Rebecca Samblanet says:

    Let me tell you first that I understand what you are going through like no one else can. I had surgery for a pituitary tumor with Cushings in June 2013 after 2 years of me insisting to my doctors that I wasn’t crazy and there was something weird going on. I only had to have one surgery so far, thanks to the wonderful doctors at the Cleveland Clinic! You are headed in the right direction, they don’t give up even if you are complicated. My tumor type has never been documented but they still were able to remove it all and treat me like they would their own family. If you ever need someone to talk to please contact me anytime. I would be glad to do what I can to help you through.

    • It’s good to know that there are people out their with similar stories. Not fun that we’ve had the pleasure of experiencing Cushing’s firsthand, but we’re in this together. I’m excited about going to the Cleveland Clinic, as I’ve heard so many good things about it.

  5. mamapants97 says:

    Laura, my mom has Addison’s disease and it is totally treatable and will be much easier to live with, she has had it for 30 years. I can attest she would run from the bear! Lol. Found your blog through the total beauty site…

  6. Lori Bloomer says:

    I read your Total Beauty piece and i just wanted to tell you that you’re still beautiful, and that it WILL get better. Just some words from a stranger — hope it helps with the battle.

  7. Marilyn Lynn says:

    Laura, My daughter was 22 when she was first diagonosed with a Pitituary Tumor and cushion syndrome. She had just finished college when she started gaining massive amounts of weight. She was always slender and played softball from the time she was 9 years old through high school and college. She was very active. She wore a size 6 – 8. She gained over 100lbs in less than 6 months. We went to 3 doctors before being sent to an endocrinologist. She diagnosed her immediately and sent her to a neurologist. She was scheduled for surgery the next day. At this time she was so swollen that it looked like her fingers and legs could bust at any time. This doctor said he was not able to get all of it but he thought it would go away! Well 2 years later the tumor was back and just as big as before.
    the endo doc sent us to Augusta, Medical College of Georgia for surgery again. Dr. John Vender, head of the neurological dept was who saw her. I thank God for that man. He was able to get all of the tumor, even around and thru her optic nerves. She was under his care for 10 years and the Endo dr there. He told us to look for her to have problems with her heart later on in life. She developed diabetes about 6 yrs after surgery. She was doing so good, had lost some of the weight and was feeling so good. He released her at this time.
    On May 21, 2010, she got up to go to work and was having pain in her right shoulder blade on her back. She told her husband it felt like a pinched nerve. She was at her computer at work and about 9:15 am fell out of her chair with a massive heart attack We lost our sweet daughter at the age of 37.
    PLEASE go to a cardiologists and get under their care also.
    I will be praying for you!

    • Hi Marilyn,

      I’d like to express my extreme sympathy for you and your family over the loss of your daughter. Thanks so much for sharing her story. None of my doctors have ever mentioned future heart problems, but then again, I don’t think any of them have dealt extensively with Cushing’s. Thanks for the head’s up, as I will definitely take this message to heart. Again, I’m so sorry for your loss and all you had to go through in watching your daughter fight this disease.

  8. Gina says:

    Hi Laura,

    I understand what you are going through. I was diagnosed with Cushing’s in 2009, had a pit surgery and BLA the same year. I have fully recovered (at least, to the level you can with a BLA) and gone from a size 18 to a size 2. I would love to talk to you and try to help if I can. I can certainly tell you my experience and recommend some doctors if your next appointment does not go well. Please feel free to email me at ginacroft03@gmail.com.

    Gina

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