Aubrey Understands

I was reading a magazine interview with Aubrey Plaza (a young Hollywood actress) the other day, when I was stunned to find a quote from her that expressed exactly how I've been feeling ever since my acromegaly diagnosis. Aubrey had a stroke at age 20, and she's been dealing with underlying anxiety ever since:

"The most frustrating thing about it was I don't why it happened, and there's where a lot of my anxiety came from. Once you know why something happened to you, you can rationalize it like, 'If I do this, I won't get sick' but if you don't know exactly why, at all times you're thinking, At any moment I could die, because when it did happen, it was totally out of nowhere. That's the scariest part." 

There are so few people that truly understand what being diagnosed with acromegaly (or surviving a stroke at age 20) is like. I constantly wonder what might have triggered my tumor, like if there was some kind of chemical or environmental exposure. Everywhere I go, I observe potential threats to my health, which leaves me feeling vulnerable and constantly on the defensive. Sometimes people think I'm just being quirky and they'll laugh and think it's cute, and sometimes people just think I'm being a paranoid pain-in-the a**. Either way, it's a real problem for me because I get really stressed out and then I start worrying that stress is what caused my tumor- and then I really start spiraling from there. I'll get really irrational, like start wondering if having acromegaly is some kind of punishment for other mistakes I've made in my life.

I've been doing on Mindfulness Based Stress Reduction (MBSR), a little yoga here and there (That's what Aubrey says she does to help deal!), trying to walk and exercise more, eat well, sleep well, get massages, spend time with my dog, etc etc, and all of that has really helped me deal with the anxiety. Writing (like on this blog) has helped me too. Having a community has also been really important (see links to support groups on the sidebar to the right) too. So I have a question for you all: what are YOU doing to manage stress and anxiety?

Tanya on Dr. Oz

Tanya continues to raise awareness about acromegaly!



I had never seen the show before, so I was quite impressed by how compassionate Dr. Oz was. He apologized on behalf of all doctors for not paying attention to their patients, and being arrogant when they don't understand what is going on with their patients.

I just met you, and this is crazy...

I was riding the bus today (coming home from the rheumatologist, in hopes of finding some joint pain relief) when a gentleman boarded that I thought looked like he definitely had acromegaly.  I was so excited when I saw him, because how often do you meet someone else with acromegaly in real life?  I imagined becoming friends with him and starting a local support group.  We could compare notes about our doctors, talk about what kind of treatment options we are pursuing, etc, etc.  Basically all the things that people are doing in support groups online, but in person!

I didn't want to make him feel self conscious though, because I can understand how someone out of the blue talking about a very personal health issue could be disconcerting.  I remembered that I happened to have one of my acromegaly business cards on me, so I wrote my email address on the back, along with "I have acromegaly too!" on it (and also the URL for this blog).  I was very nervous about approaching him, because sometimes it's weird to reach out to a stranger like that.

I worked up the nerve to say hello to him, and I said something like, "I just met you, and this is crazy, I have acromegaly too, so email me maybe."  Well, not quite, but something like that.  Anyway, he said that he had never heard of acromegaly which really surprised me because I was sure that he had been diagnosed already.  He was reluctant to take my card, but I awkwardly stood there holding it out until he finally took it.  

Anyway, person I met today on the bus, if you are reading this: I'm sorry if I made you feel uncomfortable.  I hope you realize that my intentions were good and here was my rationale:

• I have often felt so alone dealing with acromegaly that I thought both of us would benefit from having someone to have someone to talk to about it locally.  
• If you really don't know what acromegaly is, maybe you can look into it and our encounter today will lead to improvements in your quality of life.  Most people (myself included) go undiagnosed for years and years, but the earlier you are diagnosed and start treatment the better the outcome.  I personally wish I had been diagnosed earlier.  
• If you know you have acromegaly and you just didn't want to admit it because it's something very personal to talk to about it I respect that.  Sorry if I made you feel self conscious about it.
• If you have already been checked for acromegaly and you don't have it, please don't take offense, I hope you'll understand that I was just trying to help. 

So I have a question for all of you readers out there -  do you ever look at other people and recognize acromegaly in the general population?  Do you ever feel tempted to say something, or has anyone ever said something to you?  Do you think it is worth potentially offending someone if on the other hand it could lead to an earlier diagnosis?  What is a tactful way to approach the topic, or is there even one?  Leave a comment below with your thoughts!

Great Discussion on PituitaryAdemoaner

Emer of pituitaryademoaner.blogspot.com wrote a very thoughtful post about the recent lawsuit by a woman who went untreated for acromegaly for several years because of lack of diagnosis by the NHS.  There are several very thoughtful comments in response to her article as well - you should check it out!

http://pituitaryademoaner.blogspot.com/2012/08/girl-with-acromegaly-sues-nhs.html

Welcome Mike!

We have yet another acromegaly blogger added to the fold!

Mike writes, "Hello! I’m Michael, a 27 year old of the Mitten state. I’m a second year osteopathic medical student aspiring to be an ophthalmologist. I have a strong affinity for music and lemon poppy seed muffins. I was diagnosed with a brain tumor last December. This is my story. I enjoy reading, the human body, exchanging snail mail, and meeting new people."

Sounds perfect for this community, right? Check out Mike's blog, http://mikelenze.com, and drop him a note! I just checked his blog again today, and he uploaded some surgery pictures- WOW!

Spring is Here

...for those of us in the Northern Hemisphere, at least (I know we are sprinkled around the globe)!

As the weather is warming up, I am experiencing different symptoms compared to during the winter.  Are any of the rest of you noticing this as well?

Benefits that Spring brings:

• Sunshine: energizing and helps counteract depression
• Warm Weather: likely to go outside and get exercise, fresh air, etc)
• Fresh Seasonal Fruits and Vegetables: make it easier to eat healthy and achieve/maintain a healthy weight
• Longer Days: easier to wake up the mornings and more daylight hours to enjoy fun activities
• Flip Flops: shoes for folks with wide feet (like me) that don't squeeze!

Concerns that Spring brings:

• Heat = more sweating!  Solution: wear comfortable, breathable clothing.
• Exposed skin = excess body hair is also exposed!  Solution: hair removal, or decide to just go with it!
• Heat = swelling in hands and feet more.  Solution: cold compresses on hands and feet, and elevate legs in the evening.
• Heat = skin oils increase.  Solution: (face) blot with tissues and wash frequently, (body/hair) shower more frequently

Let me know in the comments section how the changing seasons affect your acromegaly, and what solutions you have come up with to help deal!

Welcome, Lauren Nicole!

Please join me in welcoming a new Acromegaly Blogger to the fold!

Lauren Nicole just started a new blog called The Life and Times of Lauren Nicole (love the URL: http://acromegalypudding.blogspot.com/).  Lauren had transsephenoidal surgery for a macroadenoma on her pituitary gland August 12, 2011, it sounds like it was a life changing event for her.  I'm really excited about hearing more about her acromegaly experience and journey!

Nicole, I hope you find that writing about your experience with acromegaly is therapeutic and insightful for you.  As time goes on, you'll be able to look back and see how far you've come, and how much you've changed inside and out!

In turn, I hope that someone who is looking for inspiration, support, or understanding will find your blog and feel better about their own acromegaly.  Keep writing!

Japan team create pituitary glands from mouse cells

This was mentioned a while ago, but now with video.

Thanks for the link, Jon!

Pituitary Patient Awareness Day (Los Angeles)

Hi Everyone!

Cedars Sinai Pituitary Center is having a Pituitary Patient Awareness Day NEXT WEEK in the Los Angeles Area.

Pituitary Patient Awareness Day

Sunday February 19, 2012

Hotel Casa del Mar

1910 Ocean Way

Santa Monica, CA 90405

(310) 581-5533

hotelcasadelmar.com

complimentary valet parking will be provided

Details:

9-10 AM     Registration

10-1 PM     Physician Lectures :

"Pituitary Anatomy and Physiology" Shlomo Melmed, MD

"Acromegaly" Vivien Bonert, MD

"Prolactinoma" Joh Carmichael, MD

"Pituitary Surgery" Adam Mamelak, MD

"Cushing's Disease" Anat BenShlomo, MD

"Pschosocial Changes of Dealing with a Pituitary Disorder" Catherine Jonas, LMFT, BCETS  

1-2 PM     Lunch

2-3 PM     Break-out Sessions

RSVP: 310-423-2617 or email kirsten[DOT]lapid[AT]cshs.org



Also coming up:

It's About the Community! 2012

Acromegaly Community’s 2012 Conference

June 8-10, 2012 in Las Vegas, NV at the Red Rock Casino, Resort, and Spa.

See website for more details