"Smoked" or "Cured"?

It's been 441 days since my transphenoidal surgery. My posts have become less and less frequent as I struggle with knowing what to write!
Sure, I could just blog about nonsense or whatever is in my mind that day but this blog is suppose to be about my journey with Cushing's so it doesn't seem right to turn it into a diary/journal of nonsense.
But the truth is, my Cushing's situation hasn't changed much in the last few months. I'm still having doubts about whether or not I'm really cured and still struggling dealing with the aftermath of it all...

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"...

Miracles are for a purpose…

   A few weeks ago, both of my church services had messages which really touched me. The last few weeks were so busy that I didn’t have the opportunity to write about them sooner and in fact I’m glad I waited because even more things happened which were related to them...

10 months: over 3000 cigarettes un-smoked and litres of alcohol and caffeine un-drunk

It’s been exactly 10 months since my pituitary surgery so I thought I would write a quick post summarising my progress so far…

In order to end on a positive note, let me just get the negatives out of the way:

• Only 10kgs weight-loss so far 
• Still having trouble with excessive sweating 
• Buffalo hump at the base of my neck hasn't completely disappeared yet 
• Still having problems with excessive tiredness 
• And I still have the abscess on my neck for which I take anti-biotics

Now for the positives:

• I’ve only had a couple of drinks here and there but overall I am still no longer drinking any alcohol or caffeine which is fine since it's my choice to stop 
• I’ve managed to avoid giving into the cigarette temptation even though I’ve been around many people who smoke 
• My periods are completely regular 
• My stretch marks are less visible 
• I only take 2.5mg of meds every other day for my blood pressure 
• I very rarely get headaches 
• I am able to do some regular exercise 
• Overall I feel good and on the road to recovery

This week, someone on Facebook posted something on their status which I loved and found totally hilarious (and very applicable to me). I want to share it with you now because I think that not only is it funny, but it says a lot about our society and reminds us that we are sometimes too hard on ourselves!

"Before you diagnose yourself with depression or low self esteem, first make sure that you are not, in fact, just surrounded by assholes."-William Gibson

The past is behind, learn from it. The future is ahead, prepare for it. The present is here, live it.

Today I had nothing much to do so I decided to update my blog. Reading through it I realised that it was time for me to edit some of the pages in order to reflect my new situation (i.e. post-op). I have to admit, it was strange having to change some of the verbs to the past tense. Changing sentences from: I get debilitating migraines to I had debilitating migraines, makes me realise how far I’ve come.

In fact, I’m sure if I read through everything I’ve posted so far I would realise what a change a year makes, but to be honest, I don’t think I even need to do that!

Aside from the fact that it would take too long (I really have posted quite a lot in the last year!), the past is still so fresh in my mind that I don’t feel the need to read everything again. I think it is quite obvious by what I said in my last post about how I’m still very sensitive about what I’ve been through and everything I’ve achieved.

But as my blog title states (thank you coolnsmart.com for the quote) I am learning from my past and preparing for the future. I am grateful to still be here in the present and I intend to live it the best way that I can.

Actually, on Saturday I attended Jesus Lifehouse Church, an “extension” of the Hillsong church, here in Hong Kong and I felt like the message was very much aimed at me again. Though I was unable to hear the entire preach because I had to leave early, I got the majority of it. It was based on the following passage: For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline. (Timothy 1:17; NLT).

The pastor reminded us that we often shy away from our full potential because of fear and our most common fears are: Fear of Failure, Fear of the unknown and Fear of what others think.

I very much agree with this and feel like fear has held me back long enough. My aim is to no longer be afraid and enjoy my life. That is not to say that I want to live carelessly or without caution, it just means that as a way of living in the present, I have to stop fearing the past or future.

No pain, No gain...

Firstly, let me apologise for the extremely long gap between the last time I posted and now!
I left London, stayed in Dubai for a few days and have now been trying to settle into Hong Kong.
Things have been going pretty well so far. I've gotten back in touch with old friends, found out more about what I'll be doing at university, registered myself at a local hospital so that they are aware of my post Cushing's status in case anything should happen and joined a gym.

Overall things are good but I'm still struggling a little. One of the hardest things I think, is people now throwing the "But you don't have Cushing's anymore" card at me!! Sure, they're right, I'm medically no longer a Cushing's sufferer now. I'm just a 26year old obese girl with residual acne and a serious sweating problem, but is that really it!? I mean, am I just suppose to get over it, move on, pretend like nothing happened and "get better"?
Sorry but I just can't do that...

So long, Farewell, Auf Wiedersehen, Goodbye...

Well this is probably the last post I will be writing from my flat in London! Yes, the time has come for me to leave. After 11years in the United Kingdom, I am returning to Hong Kong for at least 1 year but possibly more. I'm going back to study a Masters but truth be told, if I get a job or find something else to do after I will probably stay there, at least for a couple of years.

There are things I love about London: the vibrant West End, the free museums, my beautiful flat... But there are also things that I dislike about the place and after what I've been through in the last few years, I just feel like it's time I went home.
Funny word, HOME. More than ever I think the expression: "Home is where the heart is", has become applicable to me.
Being a nomad and having travelled so much in my life I often feel like I'm not sure where home really is. I find it difficult to tell people Hong Kong or France or London are my homes because there's reasons for and against that being true. Honestly, I think it shouldn't matter! It's only geography...
When I'm with my family and surrounded by people who love me I feel at home. But sometimes, after spending a long time with them in France or HK, I yearn to return to London where I feel comfortable because I know how things work and I've gotten used to the way of life.
I never thought I'd say this but I think I'll missed being called darling or babe.

8 Months- 240 days- 5760 hours- 345 600 minutes

That's how long it's been since I had my pituitary surgery! Actually, the exact anniversary date was the 20th of May but I've been a bit too busy to post lately.
In fact, this will be a short(ish) post because I'm in France at the moment visiting my family and the set up isn't great.
The main thing I wanted to share is that I had an appointment with my endocrinologist last Thursday and she gave me some great news. She said that after having reviewed all my blood and urine tests it appears that: "From a medical point of view you no longer have Cushing's".

My so-called friends

Today I've finally decided to blog about something which has been bothering me for some time but have only mentioned to my therapist and parents... until now!

In the last few months and especially in the lead up to my impending move, I have started to complain to my "friends" about other, so-called "friends". In reality this has been bothering me for a long time now but only really got highlighted around the time of my surgery and in the last few weeks.

I'm talking about my utter disappointment with the lack of compassion, commitment and support from people who I consider(ed) "friends".

Now I don't want to over use the whole quotation marks "thing" but I really want to stress the fact that this applies to people whom I'd considered friends and felt I could trust and count on.

I think we've all experienced disappointment in our lives and are all too well aware that the only person you can really count on is yourself (and God perhaps?) but does that make it ok? In my view, it doesn't!

Hakuna Matata

Today is Cushing's awareness day!!!

It gives me great joy to be able to report on this day that I am celebrating my 200th day of being Cushing's (nicotine, caffeine and alcohol) free.

Though today is a great day for me because the sun is shining and I feel good, it is important to remind people that Cushing's is a terrible, complex and deadly disease that is often overlooked.

Although today I can report that the results so far suggest I have been cured, things are never so black and white.

For those of you who read my blog regularly, you will know that a few months ago, only 4-5 months after my pituitary surgery, I was already afraid that my Cushing's was back because I'd gotten a high ACTH and Cortisol level on a blood test.

When life gives you lemons...

Well I really haven't been very good at keeping my blog up to date. It appears I'm not blogging as regularly as before and actually by waiting so long in between posts, it means that when I do finally get round to writing something I just have so much to write!! It makes it all a bit tiring for us both. Me the writer, trying to succinctly summarise the events of the last few weeks, and you the reader, trying to feign interest for what's been happening in my life. Hopefully though you'll enjoy reading and if not, tough!

So when we last "spoke" I was telling you that I was about to get a new haircut and was waiting on some test results. So the good news first: well the good news is that I went for it, got a daring haircut with an undercut on one side and re-dyed some pink into it and I absolutely love it.

Now for the not so good news...

Who's that chick?

I realise it's been a long time since I last posted and I apologies. It's not that I've had nothing to write, but having finally started to have a life again, finding time to blog has become more challenging!
But I guess that's a good thing right?

So what's been happening? Well quite a lot actually. I started going to a new church which my friend told me about. It's been about 6weeks now and I've been every week. I even joined one of the "connect groups" which is a local group that meets weekly to reflect on the service, pray and socialise. I never imagined myself such a fervent churchgoer but I realise that it brings me something that nothing else can, a natural high! Every Sunday I leave the service feeling enlightened and in a great mood. I don't know if it's the catchy worship songs, the dynamic young pastors, the welcoming atmosphere or simply the bible readings, but whatever it is, it's working!!

EHarmonyDatingMatch.com

Yesterday a friend of mine told me that she had joined a dating site. Disappointed by the lack of men she meets through her normal activities, she signed up to one of the more popular sites that offer "real matchmaking". She began to tell me however that after the initial excitement had worn off, she was worried that her ideal partner would always just be a figment of her imagination and that no such man really existed. After she told me her exact criteria I did think that she was being a bit picky, but the truth is, she has every right to be! After all, we've always been told to aim high so why settle for less when it comes to love?

So I started considering that perhaps I was ready to start dating again. I haven't been on a real date in a couple of years now and haven't been in a serious relationship in 6yrs!!! So I started filling out a couple of profiles (if I'm gonna give it a go I may as well go for it properly and really put myself out there!).
Now I know that some people are against Internet dating, and everyone has heard a horror story or two, but I think as long as you make sure to meet in a public place and inform someone you trust where you're going so they can check up on you then you should be fine. After all, we meet strangers all the time and just because we've seen them in person first, doesn't mean they aren't hiding a dark secret! And my cousin is living proof that Internet dating can work for some people. He met his current wife/the mother of his twin daughters through the Internet!!!

Life without limbs/limits

When I was in Hong Kong, I attended a literary lunch for the launch of Nick Vujicic's new book "Life without Limits".

For those of you who don't know who Nick V. is here's is a video about him from YouTube:


This man is truly AMAZING!!! He was born with no arms and no legs but has managed to do so much with his life...

New Year, New You?

So here we are, in 2011.
2010 has been, needless to say.... eventful!
Between my graduation, my grandfather passing and my surgery, it has been a tough year with many highs and lows. Some days I barely thought I would survive and others I felt an enormous sense of relief or joy. I guess that's what makes life interesting....

I've just returned to London after a month of being on holiday with my family in Asia, and although spending that much time with that much family can sometimes be frustrating, it also did me a world of good!
I'm now 16 weeks out of surgery, down 12kgs, on 10mg - 5mg - 5mg hydro a day, still non-smoking and abstaining from alcohol and caffeine, and starting to get my energy back. But most of all I'm feeling good. My body still aches ever day and I still need an average of 10hrs of sleep a night, but mentally I feel positive.
I feel ready to face the challenges of 2011 so instead of writing a post which summarises 2010, I have decided to focus on the year ahead. Look forward instead of back!