Hormones, dating and other facts of life

Well the news since the last post regarding my health, is that I underwent the Insulin Stress Test (IST) and got my results. The IST is a test during which you are placed in hypoglycemia and blood samples are collected every 30 minutes for two hours, to check your body's hormonal response when placed under stress. It was a fairly unpleasant experience as anyone who has ever been hypoglycemic can relate to. The target was to get my blood glucose down to around 2.2 (Normal range 4-6) for the results to be valid. My blood sugar level dropped to 1.3!! No wonder I felt like shit!!

It appears that my cortisol levels lowered during the test, indicating that my body is unable to secrete cortisol in times of stress. This means that I still have cortisol deficiency and should keep taking my hydro (good news actually!). The report also states that there was no growth hormone secretion throughout the test and in fact, we already knew that my levels were low if not inexistent. What this means is that I will probably have to discuss growth hormone replacement as this might help alleviate the fatigue I've been feeling. Growth hormone is responsible for distribution of fat and brain functioning among other things. So don't think it's only important in kids, we ALL need it.

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

Embrace the highs and push through the lows

So it's been a pretty tough week with a follow-up appointment on Tuesday where I found out I had to have all my pituitary removed, but today has been a good day so I decided it would be a good day to post.

I often find that if I try to blog when I'm feeling down, all that comes out is sadness and venting. I don't like to put too much negativity on my site. Not to say that Cushing's isn't a bitch to deal with and the reality is that there's a lot of negativity involved. But I think that the other Cushies out there who might read this have enough pain and suffering in their lives that they don't need to hear all the doom and gloom in mine too.

I think it's important that when I feel good, I share my positivity and good mood with others. After all, they say laughter is contagious so maybe I can send my good vibes out too!?

What doesn't kill you

There is an old adage that I often use which says that what doesn't kill you only makes you stronger. I wonder if the strength you gain is proportional to how close to death you come or how much you actually suffer. Because if it is, I should be as strong as an ox by now! (Or at least a very strong cow!?)

On Thursday the 1st of November, I checked in to the National Hospital for Neurology and Neurosurgery in Queen's Square, London. I showed up at 9am, having fasted from the night before and mentally ready for the Inferior Petrosal Sinus Sampling (IPSS). But I don't think I was prepared for the day ahead of me. Firstly it turns out that contrary to what was stated on my letter, I did not need to be there for 9am as I wouldn't have the procedure until 2pm. Which also means that I didn't have to start my fast until later that day. But because the nurses were unsure and as usual no doctor was around to give correct advice, they refuse to let me have anything except a small glass of water. 

US vlog

I have decided to attempt to document my US trip using video blogs or vlogs. I will try and upload a video to my YouTube account (CushieSteph) every day or at least whenever I have access to the internet. The new videos should show up here on the blog in the little video box on the left hand side. But the easiest thing is to subscribe to my YouTube channel: www.youtube.com/user/cushiesteph

I'm really looking forward to this trip as I will not only be attending my friend's wedding and seeing my sister and a friend of mine who recently moved to NYC, but I will also be meeting up with some fellow Cushies.

I can't wait to meet more women who have been through and are still going through the hell that I endure. I hope that we can share and learn from each other.

Day 15: Is it too soon?

Is it too soon?


Earlier this week I was staying with some relatives and a distant cousin of mine who is 5 years old asked me: "Do you eat chocolate every day?". When I replied no, I was glad that she moved on to something else. But I wasn't so lucky after that. A few hours later, she started stroking my arm and laughing about how fat it is. "You have a fit thigh" she said, confusingly using the word thigh to mean upper arm. I was not offended by her comment as she was right but I simply replied: "Yes you're right, but this is my arm not my thigh". She then proceeded to ask me why my arm was so fat. I didn't know what to say!! I replied the usual response that any panicked person being questioned by a 5 year old gives: "Just because". What I failed to anticipate was that this time she wasn't going to let me off easy. "But WHY?", Why, why, why, why, why???? (Any one with kids or who's had to deal with kids will know how persistent they can be when you do not give them a satisfying answer). As I was debating in my mind whether to tell her it was because I was sick, I decided to distract her with a question of my own "Why is your hair black?". I'm not going to give you all the details about how she quite intelligently pointed out that it was because everyone in her family had black hair but basically, I got outsmarted by a 5 year old!!!

But the reason I'm sharing this story with you is because it really got me thinking, when should we start telling people/kids about things like disease and how they can affect you? How can we expect children to grow up without prejudice or misconceptions about overweight people if we do not provide them with an alternative explanation. It is normal that a 5 year old will assume that someone overweight eats chocolate every day because that's what is being portrayed around them. When I learned about the body in biology I don't remember being told that hormones affect weight. All I remember is being told that only a healthy diet and exercise will keep you slim and fit, and that eating badly will make you fat. So if even I didn't find out until I was 25, how can I expect this 5 year old to understand?

I remember I watched a program on TV a while back about people living with disfigurements. One of the guys on the show talked about how kids would often stare at him and either ask him (if they were brave enough) or their parents, why he looked like that. The man very rightly said that he understood their curiosity and in fact liked the opportunity to provide them with an explanation as this helped educate them. Part of me really wanted to tell my cousin that I was fat because I was sick and my disease affected my body but I think I was just too scared about what else she would ask. I was unsure about whether I could explain it to her properly and if it was really appropriate. I guess I was afraid of getting too serious with her considering how young she is. But with hindsight I regret not taking the opportunity. I think that she could have handled it and worse case scenario, she would have just changed the topic or stared at me blankly. Either way, I don't think it would have done any harm but it could have helped. We shouldn't be afraid of sensitising young people to the realities of life. It's not about scaring them it's about making them open, well rounded individuals. It's never too early to start education and awareness.

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 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 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 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. 

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...

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.

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!