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

Groundhog day

Monday last week, the 8th of April was Cushing's awareness day. Unfortunately because I was traveling from London to Hong Kong I was unable to write a special post or even put anything on Facebook. By the time I landed in Hong Kong it was late at night and I was so exhausted that I just couldn't bring myself to write anything. But as one of my fellow cushies pointed out, EVER DAY is Cushing's awareness day for us!! Because we suffer from this terrible disease every single day. In the last 10 or so years I've been suffering from symptoms, not a single day has gone by when I have felt "normal".

Surgery, the sequel

Well folks, the time is now! In a couple of days I'm being admitted to the National Hospital for Neurology and Neurosurgery for my 2nd pituitary surgery. I must admit, I'm feeling a little apprehensive but also kind of looking forward to it. I mean, of course I'm worried about the risks and possible complications but I'm also excited about the possibility of finally being cured. Nothing wrong with being optimistic and hoping for the best!

I'm realistic, I know the odds are against me and I'm likely to suffer from some pituitary damage and loss of hormone function, but the thought of getting some of my life back keeps me strong. My mum is arriving this evening and she'll be here for 6 weeks to help with my recovery. I'm grateful to have the support of my friends and family, and feel blessed to be alive and loved. I'm also really happy that Pepper (my retired greyhound) will be here to help keep me motivated during those long weeks when I feel terrible and all I want to do is sleep. 

I've decided I want to document this time better than the last. In 2010, I took a few photos here and there but didn't keep a strict journal. This time I'm gonna do it right! Take a photo of my face every day over the next few months so I can really see the changes. When you see yourself in the mirror every day it's hard to notice and you sometimes feel defeated. This way I'll have photographic evidence!

If I'm bold enough I might also take full body shots. Don't worry, they'll be fully clothed...

On a positive note, the last few nights I've been having dreams in which I'm back to my normal size. I'm taking it as a sign that I will soon be able to find clothes that fit me on the high street and begin exercising again! This year I AM making New Year's resolutions and they're gonna be the typical diet and exercise ones but at least this year they might work...

Being ME

Hey blog readers!

Hopefully some of you watched the videos I posted from the US. I only ended up making 2 which is obviously not very impressive and they were very short but turns out I am much more camera shy than I thought! I was also having so much fun and was just so busy that I thought "I'm sure my blog followers will understand"...

I got back from the US on Sunday the 23rd after nearly 3 weeks of sightseeing, connecting with friends and enjoying life! I really didn't want to come back. I mean, I missed my place and was starting to get a bit tired of living out of a suitcase but I have to admit, it was nice just being carefree and enjoying myself. Now that I'm back, it's back to reality and it's not easy....

Roller coaster of life

We're always told that life is like a roller coaster, it has its ups and downs. But I don't think I ever realised how high up or how low life could really go until I was diagnosed with Cushing's. In the grand scheme of things I can't really complain as I'm still here, still living and breathing. But to be honest I wouldn't mind having a go on the merry-go-round for a while. The wooden horses only go up and down a little but mostly go round and round in circles. Sure it would get boring, but the slower pace would be nice once in a while.

I guess it just seems like since I've been suffering from Cushing's things go from one extreme to the other! And I'm not just referring to my mood swings...

Just a few days ago I was ecstatic because I found out that I'd not only completed my Masters, but I'd gotten 9 As and only 2 Bs meaning I would be awarded a mark of Distinction. And today, I find out that my Cushing's recurrence has been confirmed. I failed to suppress on both the low dose and high dose dexamethasone tests. It was such a crushing thing to hear. Sure I was somewhat prepared but still... You always hold out hope...

Day 28: Which came first, chicken or egg?

Which came first, chicken or egg?


One of life's philosophical questions is: Which came first, chicken or egg? One of my evolutionary psychology lecturer asked us this question back in year 1 of my BSc and we came to the conclusion that it cannot be answered. After all, it appears one cannot exist without the other.

Day 19: TLSC 4

The lighter side of Cushing's 4


The term BBW refers to Big Beautiful Woman. Unfortunately this term is not widely used or even known as there still seems to be a prevalence/preference for skinny/slim woman. Since suffering from Cushing's I have been every size from 10-26 (UK) and am probably at my heaviest/biggest right now. Though I find this very depressing and I try my hardest to watch what I eat and exercise, there isn't much more I can do about it until my hormones get sorted out. So I'm trying to accept myself and love the BBW I've become. Here are some fun photos and a video by Mika entitled: Big Girls (You are beautiful).

Day 11: Do's and Don't's

Do's and Don't's for friends and family of Cushing's patients


Don't:

• Trivialise how we feel - telling us to "get over it" makes us feel like you don't appreciate how difficult things are.
• Compare our situation to something/anything - it is good when you try and put yourself in our shoes, but comparing our situation to something you encounter in your every day life only demeans us. For example, comparing the tumour induced headaches us Cushies get to being hungover is downright offensive!
• Think we are exaggerating - it is true that some people tend to be dramatic and make things out to be much worse than they are but all the Cushing's people I've come in contact with, including myself, we actually have a tendency to down play how terrible we truly feel. So used to not being believed by doctors or others, we tend to internalise our pain and rarely speak up and ask for help. So if we tell you that we're hurting and need you, we really mean it. 
• Forget who we are/were - remember that when we suffer from Cushing's, it changes us but only as long as we are sick. If we have always been active and positive but because of the disease no longer have this energy, don't think that we are all of a sudden lazy people. Cushing's doesn't change us fundamentally, it only affects our abilities for a while. Underneath it all we are still the same person we used to be and in fact we long to be that person again so don't treat us completely differently.
• Forget that we are sick - this may sound like a contradiction to the earlier point but it isn't. Although it is important that you do not treat us differently, you must still bear in mind that we are sick and have different limitations now. So if we used to be super sporty but can barely do anything now, do not suggest a 20 mile hike. But don't automatically rule out all possibilities of exercise, try and be understanding and see if you can encourage us to do some form of activity that we can still enjoy.

Do:

• Help with everyday chores - sounds like a silly thing but by helping doing such trivial things as hoovering, cooking dinner etc, you are actually being a life saver.
• Be patient with us - we realise that we can be difficult to deal with and that it's hard for you when you don't fully understand what we're going through, but please bear with us.
• Keep us smiling - without making a joke of things, help us keep it light. Sometimes we get too serious and focused on what's going wrong that we need help seeing the good side of life. You can help us navigate through the depression and isolation.
• Help us raise awareness - we understand that this disease doesn't affect you directly but as concerned friends and family you are in the best position to witness first hand the struggles we go through. Help us with others so that we may all benefit from further support and understanding.
• Just be there - sometimes, just being physically present is a great form of support. I am so grateful for the times my bestie spent waiting with me for an appointment and the hours/days my mother spent by my bedside when I was recovering from surgery. Just having them there was so comforting that even without words I felt loved and supported.

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 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.

Day 5: 5 challenges and 5 small victories

5 challenges and 5 small victories


Challenges:

1. Staying positive and optimistic about my health - it is difficult and sometimes even dangerous to imagine myself completely healthy again.
2. Being patient - because of the complexity of Cushing's you have to be very patient about diagnosis, treatment, etc. You also have to learn to be patient with others who rarely understand what you are going through and can sometimes be very dismissive.
3. Maintaining a clean flat - doing housework is one of the most tiring things when you are ill!
4. Realising who you can count on - I'm sorry to say that when I became very ill I found out who my real friends are. Not many people stick around or support you when you're not doing so good, especially if your illness affects your mood.
5. Accepting your losses - no matter how much my health improves or how well I manage to cope now and in the long run, nothing will change the fact that I lost around 8years to this disease. I lost friends, opportunities for love, travel, and much much more.

Victories:

1. Having a more positive outlook on life - having Cushing's has actually forced me to reassess my life and appreciate all the wonderful things I DO have.
2. Maturing and growing from the experience - going through this has helped me in so many ways. It has made me a stronger and better person and will also help me with my career.
3. Accepting your weaknesses and strengths - I now have a clearer picture of who I am and what I am capable of.
4. Realising who you can count on - I have also discovered the great love and support that people can give towards you in time of need. 
5. Accepting your losses - I have come to realise that although I have lost many things, I have also gained so much. Sometimes we do not understand why we have to go through these losses but it is important that we accept it and forgive others and ourself for it.

As you will have noticed, many of the challenges are also victories! This is because I strongly believe in the notion that we can learn and grow from our experiences, especially the negative ones. And that there are a million and one ways to see and react to a situation. We can see the glass as half empty or half full and in fact it will probably depend a lot on how thirsty we are but either way, we always have a choice. This is one of the greatest and most difficult things about being human, our endless choice.  

Day 3: What 3 things has Cushing's stolen from you

What 3 things has Cushing's stolen from you:

1. Self-esteem. One of the most important things Cushing's has taken from me is my self-esteem. Sometimes we don't realise how important it is to feel confident in ourselves until we are put in a situation when we feel so uncomfortable we'd rather disappear. It is only once you lose confidence in yourself that you realise how important it truly is. When I was younger I had moments when I didn't feel totally confident in my appearance (as many teenagers do) but it never completely prevented me from engaging in activities I enjoyed. After Cushing's and the devastating effect its had on my body, image and confidence, I am reluctant to do things I used to love. For example, I no longer dance and sing in public. In the past few months I've been working really hard to restore it and have already started singing in public again but I can tell you, it takes a lot to overcome. At the end of the day, it is true that the harshest critic is usually ourself but I also know first hand how cruel and judgemental people can be. And there is one area in which I am having extreme difficulty getting my confidence back and that is interpersonal relationships. Which brings me to the 2nd thing Cushing's has stolen from me:
2. The ability to trust others. Not only have I not been able to have a serious relationship in over 6 years, but my lack of self-esteem and confidence has even prevented me from building and sustaining friendships. Because of my inability to fully open up to others I haven't been able to get close to anyone in real life. For a long time, I refused to take part in social engagements because I felt so uncomfortable. I also didn't feel like myself and in a way I was therefore not allowing myself to make friends because I wanted people to know the "real me", not this Cushing's version of me.
   And so the last thing I would say it has taken from me is:  
3. 8 years and counting... Ever since I became ill I feel like I've put my life on hold. Not being able to do the things I want and not feeling like myself. Especially in the first few years, when I was undiagnosed and I thought that all my problems were "in my head". I can't believe how much time I wasted blaming and hating myself, wishing I could fix myself or die. I went through some very dark times. I also wasted hours on end at doctor's offices, hospital waiting rooms, waiting for blood test results, MRI scans, etc... It also appears that I am not yet fully cured therefore Cushing's is still taking up a lot of my time. More appointments, tests, etc... But the difference is, now I refuse to let it take more time than it needs/deserves. I am insightful enough to realise that how I cope with my disease is up to me and that I can stop it from dictating the rest of my life. 

"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"...

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...

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.

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!