Tanya Angus

This post is long overdue, because writing it has stirred up many emotions for me. Publishing it makes it feel real and final and undeniable.

Tanya Angus passed away on January 14, 2013.

Tanya was an inspiration to me any many others across the acromegaly community. By being an acromegaly awareness activist, she saved lives and spared others from the suffering that comes with a delayed diagnosis. She went public with her struggles, which helped her fellow acromegaly patients remember we are not alone and that someone out there understands. By sharing her story, she taught people to be compassionate and non-judgmental towards others, because she opened up about all the things she has to deal with behind the scenes, and this could happen to anyone. Throughout her life, Tanya was a role model of grace, kindness, humor, dignity, and purpose in the face of adversity.

I followed Tanya's acromegaly journey online via her website, where I read updates and watched her appearances on TV shows and local news features. Many of the news articles that reported on her death noted her age: just 34 years old. Seeing all those headlines was a glaring reminder of how young she was and that acromegaly took her away from us too soon.

I had the honor of spending time with her in person twice in addition to a few brief phone calls. I dreamt of the day when we could have a big celebration together because a cure had been discovered- some procedure or drug that would work for all of us, permanently, and we would be free from the the pain, medication, side effects, medical appointments, tests, and emotional exhaustion that comes with the disease. Tanya is free of all of those things now, and remembering that is my only comfort as I consider her passing.

My heart goes out to her loving family, especially her mother Karen and godmother Tina. By taking care of Tanya, Karen and Tina also took care of the entire acromegaly community by extension, because Tanya's story raised awareness of our disease, got people to care, and helped them to understand what we go through. If there ever is a cure, it will be a result of Tanya, Karen, and Tina's efforts.

Rest in peace, Tanya. You are missed and will never be forgotten. You continue to inspire me even though you are no longer with us, and I hope that I can honor you by continuing your mission to educate others about this disease.

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!