Awareness day

I can't believe how long it's been since I've posted anything on my blog! I'm sorry to those who actually read it, as I have not been updating you with my progress. In a way, it's kind of a "No news, good news" situation, but that's no excuse...

After the traumatic and terrifying experience of the emergency surgery to repair my CSF leak, I have slowly but steadily been improving. I think I can point towards Christmas and New Year as really being the turning points for me, energy-wise. Since the beginning of the year I have rediscovered myself and my enthusiasm for life, in large part due to the fact that I have felt much better in myself. That isn't to say that I am back to my pre-Cushing's state, but the reality is that might never happen. However, I have been losing weight and been able to go to the gym a couple of times a week. I have also started to accept myself and love myself that little bit more. I don't think even my own best friends and family realise how low my self-esteem had gotten....

Another major difference is that I have actually started feeling good enough about myself that I have started to venture into the world of dating! Now I'll be completely honest, it's been tough. A lot of shit men who didn't appreciate me and one great guy who broke my heart. But I guess I should focus on the positives and the fact that I am even dating, full stop, is pretty amazing in itself. For years I had not felt beautiful or even worthy enough of someone's attention, let alone love. The last few dating experiences haven't exactly disproved this belief but what's important is that I took the risk. I opened up and allowed myself to get close to someone and that's something which I haven't been able to do in years...

On this awareness day, I am reminded of how impactful Cushing's has been on my life. To say it has completely taken it over is a bit of an overstatement but the truth is that it has affected me in many ways: physically, psychologically and emotionally. It has affected my relationships with others (or lack thereof) and my ability to fulfil my aspirations. BUT, it has also given me an inner strength and determination I never knew I had, taught me serious life lessons and made me appreciate all that I have in life. I have lost a lot of things along the way: friends, (body) confidence, faith in God, the ability to bear children and my entire pituitary gland, but I'm still here! "To live is to suffer, to survive is to find some meaning in the suffering." - Nietzsche

Nietzsche was right! I have gotten to know this philosopher fairly well thanks to my course and I believe he sums it up beautifully for me:

“Amor fati (love your fate): this is the very core of my being—And as to my prolonged illness, do I not owe much more to it than I owe to my health? To it I owe a higher kind of health, a sort of health which grows stronger under everything that does not actually kill it!—To it, I owe even my philosophy.… Only great suffering is the ultimate emancipator of spirit, for it teaches one that vast suspiciousness which makes an X out of every U, a genuine and proper X, i.e., the antepenultimate letter. Only great suffering; that great suffering, under which we seem to be over a fire of greenwood, the suffering that takes its time—forces us philosophers to descend into our nethermost depths, and to let go of all trustfulness, all good-nature, all whittling-down, all mildness, all mediocrity,—on which things we had formerly staked our humanity.”

― Friedrich Nietzsche

Fourth time lucky?

Hey all! So it's been a while since I posted (seems like I've been saying that pretty much every post!) but I've been pretty damn busy. Been working hard at uni and freelancing for my charity. Plus, I've actually been having something which resembles A LIFE!!! Now don't get too excited there folks, it's nothing to write home about (though I guess I found it worthy enough for blog writing) but it's a hell of a lot better than what I had before.
Basically in the last few months I've been really feeling better energy wise. The fact that I've lost over 20kgs might have something to do with it but I also think it's thanks to the correct medication dosage I'm now on. If you remember the doc started me on cortisol lowering meds and after surgeries 2 and 3 messed up my pituitary I've also been replacing a whole host of other hormones. Although it's a pain having to take so many pills, it's totally worth it. I'm able to walk an average of one hour every day, I'm not sweating as much and my mood has been pretty stable. All in all, I've been feeling pretty awesome.

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Apologies for not posting on Wednesday evening as promised but I just couldn't bring myself to do it. It is with a heavy heart that I write this post already and if I had written it on Wednesday it would have been filled with anger and despair. That is not to say that this post will be full of joy and optimism but at least after a couple of days I've been able to digest the bad news and vent my emotions out.

2012, a retrospective

Well here we are, the end of the first week of 2013 and a good time to look back on all that's happened in 2012. But let me start off by informing you all that I received my letter from the NHS and will be admitted to hospital on the 24th of January. I'm guessing that means my surgery will be happening on the 25th. I'm actually quite impressed by how quickly I got a date as I was expecting it more to be around early February. So my mum flew back to Hong Kong with my dad yesterday and she will be returning around the 23rd so as to spend time with me whilst I'm at the hospital and during my recovery. Last time she stayed around 6 weeks and I can honestly say it was a blessing having her around. 

Out of sight, out of mind?

So it's been a week since my last post. Did you miss me? I promised that even thought I wouldn't blog every day I would still keep you updated so here's what's happened in the last week. (Quite a lot actually!)

The appointment on Monday went well. I met a very nice neurosurgeon who took the time to listen to me and seemed pretty knowledgeable. The bad news: the MRI was clear. You might be wondering why that's bad news, well because if the tumour isn't on my pituitary again it means it could be somewhere else which isn't exactly a very pleasant idea. I could have a tumour on my adrenal glands or anywhere else in my body.

But there is a chance of what's called a false negative which basically means that even though the MRI is clear there could still be some tumour tissue left. Even the smallest, trace amount could be enough to cause excess cortisol.

Day 14: "I want it"

"I want it"


Yesterday as part of my course I had an introductory class in Drama Therapy. One of the exercises we did was to partner up with a fellow classmate and improvise. One of us could only say: "I want it", whilst the other could only say: "You can't have it". We did this exercise several times over with some variations but the gist of it  was always, one person wanting something and the other denying them it. I didn't have any particular problem playing this game until we got to the final part. The lecturer told us to sit facing our partner and this time actually voice out what we really wanted in real life and for our partner to neutrally but sincerely reply: "You will have it". When it came to my turn, I started off by saying "I want to finish my Masters and get a distinction..." and tears started forming in my eyes as I said "I want to be cured, to stop having to go to the hospital and just be normal and well again". I then had to stop myself as I could feel a wave of sadness washing over me. I don't know why I became so emotional, I guess that's why drama therapy works! You think you're innocently playing improvisation games but in reality you're accessing your unconscious. I think that deep down, it really hit home for me that I want something i.e. to be cured, yet life is denying me it.

I often see on Facebook a post that keeps going round about Cancer. It goes something like: "All of us have a thousand wishes. A Cancer patient only has one wish, to be cured..." (I'm paraphrasing but that's basically it!) But I think this is true for anyone with an illness/disease. It is so important to remind people that because of how rare Cushing's is, we don't have as much support from the medical and general community as other common diseases such as Cancer. So please, remember that we want to be cured just like every one else who is sick. We did not choose to be this way by eating too much or being lazy. Cushing's is serious and it kills. By helping raise awareness and being there for people like me who need your love and support, you can be that partner that says: "You will have it".

Day 10: What I learned the hard way

What I learned the hard way


We often hear the idiom: "Don't judge a book by its cover". In fact, many of us would like to think that we are tolerant and open minded. At least I definitely thought I was. But I came to realise that we all carry some form of prejudice or judgement in our minds. I myself used to think that people who were fat just didn't eat properly and were lazy. Though I never made fun of anyone for being overweight, it never crossed my mind that it could be due to something serious. I held the same assumption as others that only those who are lazy and over indulgent are fat. This is because I never had any problems with my weight growing up and if I ever though I was a bit fat I would just go on a diet and lose weight fairly quickly.

So when I started gaining weight and I couldn't understand why, it was a very upsetting and confusing time. But what made it worse was how others were treating me. Apart from one period in high school when some bullies taunted me, I had never really experienced discrimination. But now I was being openly mocked in public, being stared out and having people avoid me. It hurt so much to experience first hand how cruel and inconsiderate people can be. I mean, what gives people the right to shout things like: "Who ate all the pies?". Being the (fat) butt of people's jokes is not a nice experience. Actually, I can relate it to when people have discriminated against me because of my race. I am mixed race, French and Chinese but look more Chinese and have experienced some racist remarks.

I learned the hard way that no matter how "evolved" we get, and all the safeguards that are being placed against sexism, racism, etc, fatism is still alive and kicking! Fatism is my word to descibe discriminating against people for being fat. It used to be that being fat was a sign of opulence and was even beautiful. Now, it's associated with greed and laziness.

Well sorry but my book cover is tattered and fat but if you bothered looking beyond the outside you would see that the content is beautiful.

Day 7: Where do you see yourself in the future

Where do you see yourself in the future?


Short term goals:
In the next few years, I would like to be completing a Professional Doctorate in Counselling Psychology. This is a requirement in order to practice as a counselling psychologist in the UK. The way I see it, with this level of qualification, I will be able to practice in many other countries which will allow me flexibility and freedom. I would like to try my hardest to lost some weight. Even if I do not manage to lose all of the weight I have put on even a small amount would make a difference to my health and self-esteem. I'd like to be back exercising regularly again perhaps by engaging in an activity like dance or Muay Thai (both of which I love and used to practice to a very high level). I would also like to meet a man with whom I could build a loving and trusting relationship with. I feel that I am ready to love again. But most importantly my biggest short term goal is getting my health sorted out. At the moment I am still in limbo with ambiguous blood results and awaiting MRI results. I anticipate that in the next few years I will have undergone further investigation and taken more steps towards recovery. 
Actually I was writing a paper on spirituality in healthcare recently and I read that spirituality may not cure someone but it can help heal them. This is important because some people can never be fully cured but healing is possible for all. Healing is about achieving peace of mind and acceptance. If I am to live with this for the rest of my life, I hope that I am at least able to fully heal so that I may love and accept myself fully.


Mid term goals:
In 5-10years time I would like to have set up my charitable foundation and be running my practice as I imagined it so many years ago. I have had a dream about a centre that heals mind, body and soul for years and I hope that some day in the not too distant future I will be able to make this dream a reality. I also hope that in my personal life I will be settled and hopefully married by then. I would like to say that kids are in my future but life is so unpredictable that I can only hope. I also hope that by then I will have recovered enough health that I am able to go travelling around Latin America. I have always wanted to visit the Maya and Inca ruins. The Machu Picchu, etc... But these holiday destinations require a certain degree of physical fitness which I hope to have achieved by then. 


Long term goals:
After 10+years I hope that my professional career is blossoming. So much so that if I have children I am able to devote more time to them and have the flexibility to determine my own schedule. I hope that by then I have achieved a healthy work/life balance and have supportive and fulfilling relationships with my friends and family. I also hope that along with all these I am able to enjoy financial security that allows me to travel and live comfortably. 

Day 6: What new goals did Cushing's bring to you

What new goals did Cushing's bring to you

At the same time as I was embarking on my Cushing's journey, I was going through some major life changes. Going back to university, studying psychology and trying to figure out what I wanted to do with my life now that I had realised I no longer wanted a career in the Performing Arts.
As I started gaining more insight into psychology and started learning more about things like illness behaviours, locus of control, health belief models etc (don't worry if you don't understand these terms, they aren't relevant to this post per se) I realised that everything in my life was pointing me into the direction of health psychology/behavioural health. Basically, the psychological aspects of health and illness.
In my second work placement at university I worked for a charity which represents patient organisations and I got to meet many extraordinary people who advocate for patient's rights. I learned about the value of patient support groups and was part of a movement to raise awareness of the government and general public about rare diseases. At the time I did not even know that I would soon be able to call myself a rare disease patient as I wasn't yet diagnosed.

Coming to HK to do my masters and having to try and receive follow-up treatment here, I've also been able to compare the UK and HK health systems. It's made me appreciate and realise the impact of many things. For example, in London during my MRIs I was given headphones so that the radiographer could speak to me and I could also listen to some music during the test. It never drowned out the horrible MRI sounds completely but it was still much more relaxing. In HK, you are only given ear plugs which don't really drown out the MRI sounds but prevent you from hearing if the nurse is talking to you or not. And once they're in, you have no idea what's going on and it feels very claustrophobic. I nearly started to have a panic attack at my last MRI even though I've had plenty done before.

All these personal experiences have given me more direction and focus. I now know which direction I want my life to take and not just in relation to my own health, but professionally. I want to become a counselling psychologist but I would also like to focus on helping those dealing with illness. For example, I would like to help women who have self-esteem issues following breast cancer. Or helping people adjust to being diagnosed with a chronic illness such as diabetes. I would also like to start up a support group for people who's physical appearance has been affected by their disease and who consequently suffer from body image issues.

It's funny but when I think about it, Cushing's has actually given me MORE goals rather than less. I have always been ambitious therefore I always had/have goals so all I've done is readjust them a bit to take into consideration my limitations but I've also added some.

Tomorrow's post will be "Where do you see yourself in the future", taking into consideration these goals and how and when I'd like to achieve them.