The sound of silence

It's been over a month since I last posted and in fact I failed to post on a fairly significant day (well, significant for me anyway), my 1 year post-op anniversary.
There's a saying: No news means good news, and though that is usually true for me, this time it isn't quite...
Not to say that things have been going particularly badly, but I guess I've been slightly reluctant to post because when I think about what I want to write, I somehow feel like I'm sounding like a broken record. Still haven't lost any weight, still having issues with self-esteem, still having difficulty feeling "normal"...

Since the last time I posted, one of the major changes has been starting up my Masters. My classes have been really interesting and I'm glad to be doing something although I had some minor difficulties in the beginning. Mostly because of language and cultural differences. It's funny but it just reminds me that when you're from everywhere like I am and you have no real affiliation to any one specific culture, living anywhere is a bit of a challenge. You never quite seem to fully fit in... On a funny note, my accent has gone completely mental! After living in the UK for 11yrs I had developed a somewhat fairly British accent (though I did sometimes get asked if I was Australian!) but now it's reverted back to this weird HK/International accent sounding pseudo-Chinese American. Lord knows where that can from!? I think it's because I have the habit of mimicking people's speech and I can't help it but when I'm in class I feel embarrassed speaking with my English accent so what comes out of my mouth is.... well it's just weird! But actually, listening to other International kids like me, I've noticed that I'm not the only person who's picked up a strange accent from years of living in different countries.

So as I mentioned in my introduction, the main event that's come and gone is my 1 year post-surgery anniversary. What's interesting is that family and friends around me didn't quite understand why this was an important date for me. Some even asked why I wanted to remember this date and thought I should adopt the "it's in the past, move on" attitude. But for me, the date of September 20th 2010 is much more significant than any other conventional anniversary. I mean, people make such a big deal out of being born or it being New Year, why do they not understand that I would want to celebrate a whole year of being tumour free? Not only that, but it was also marking one year of me having quit smoking and alcohol. I did used to say I had also fully quit caffeine but I've come to realise that it's slowly creeped its way back into my lifestyle by way of Coke Zero and Mocha Frapuccinoes.... Never mind, I had reduced my caffeine intake out of personal choice anyway, not because of doctor's orders so it has no real baring on my health. And actually, those are the only two caffeinated drinks I enjoy, I still avoid coffee and anything stronger.

When I think about how far I've come in the last year or so, it does feel slightly bitter sweet. Partly, I have a great sense of gratitude and appreciation for my life, family and friends, but in another, I still feel like there's something missing. They say it takes years to recover from an illness physically, mentally and emotionally, and it's true. I may not bare scars from my neurosurgery, but I definitely have scars from being a Cushie. Some are physical, many are metaphorical, but all of them feel just as real. One thing that is also preoccupying me is that my new endo (and I) suspect that I still have high cortisol levels, which could explain why I am still not losing weight. I pray to God that this isn't the case and that my lack of weightloss is due to the fact that I have not being dieting and exercising as well as I should have. Unfortunately, maintained weight aren't the only signs/symptoms I have... I'll keep you posted...

What I am most grateful for however, is that I have been diagnosed and treated. Even if I might still need further treatment, at least I have finally received vindication because for years I knew there was something wrong with me but was battling against doctors and other health professionals who refused to accept it. Now I still struggle with getting acceptance from my peers who hold judgement and have preconceptions against me, but at least the medical community somewhat recognises my plight. Very few people understand how frustrating and heartbreaking it is to feel like you are up against everyone and everything. One of my Facebook cushie friends made this cartoon which illustrates well the way we are treated, even by doctors:

*Medical school mantra "When you hear hoof beats, think horses, not zebras"

Some of you may probably not understand but hopefully you will...

One of the most frustrating things that happens to me now is that when I try to explain myself/my condition to people they either don't understand, or they say: "But you're cured right?" suggesting that I should be fine by now. Yet when I speak to my doctor about problems I may be having they just say: "Well it's probably remnants from your Cushing's". Funny how I either have it or I don't, depending on how convenient an explanation it is.
So I've decided to look at it this way: just as a cancer survivor is in remission, and an alcoholic is on the wagon, so I too, remain a "Cushie" with chances of relapse. I am not being pessimistic, I see it as realism! I still remain hopeful and optimistic about my future and know that more great things are ahead of me....