2013, a promising year

It was my birthday yesterday! I turned 28. I can't believe I'm already edging closer to my 30's. I honestly feel like I should get a refund on my 20's! But I'll save my ageing rant for when I actually turn 30...

I wanted to let you know how my appointment went. On Tuesday the 18th I met with my endocrinologist, a specialist nurse and a neurosurgeon. As you may recall, I've mentioned in previous posts having several questions I wanted to ask regarding my treatment options. For example, why was I not being offered medication or an Adrenalectomy? So on Tuesday I finally saw my usual doctor and was able to ask all the questions I wanted. In fact, I was really impressed by how informative and sensitive my endo and the neurosurgeon were. They both took the time to explain their findings to me and why they felt that a 2nd pituitary surgery was the best way forward.

Postponed

For those of you who follow my blog you may be wondering why I haven't given you an update following my appointment. Well it's because my appointment was postponed to the 18th of December. They actually told me a little while ago but I forgot to post it on my blog.

Thanks to those of you who expressed concern and asked about whether I had received any news yet.

I will definitely provide you all with an update after the appointment.

In the meantime, you'll be pleased to know that I'm doing quite well. I've been super busy working on several projects for Genetic Alliance UK, a charity with which I have been doing work on and off for since 2009. It's interesting work involving research and is for a great cause. They represent patients and patient organisations concerned with genetic diseases. They also have a project called Rare Disease UK which is specifically concerned with rare diseases. So you can imagine why I am so happy to work for this charity and thrilled that I am able to contribute something useful.

Also, Pepper (my beautiful greyhound) is settling in well. She's starting to show her personality a little more but is still a very chilled, easy going dog who adores cuddles and food. They do say dogs resemble their owners....

So I leave you with some pictures of my beautiful new best friend:

D Day

So I finally heard back from the hospital and I will be meeting the Multi-Disciplinary Team (MDT) on the 11th of December to discuss my IPSS results and what my treatment should be. The nurse I spoke to on the phone did say that they are suggesting another pituitary surgery which was to be expected since the source of my Cushing's is pituitary. However, we will be discussing alternatives including Signifor, the new medication, and bilateral Adrenalectomy (BLA). I want to make sure I explore all my options as the long-term effects can be very difficult depending on my choice. Every procedure carries its own risks and complications and nothing is every 100% sure. After all, people can die from even routine procedures like appendectomies. I know that no choice will be perfect but I want to make sure I make an informed decision and that the doctors realise that I want to be involved in the treatment and management of my own disease. After all, I'm the one who's going to live with the consequences for at least another 40 years (I hope!).

I am grateful that my parents are coming to visit me over Christmas and my mum is even flying over early so she can attend the meeting with me. I think it will help having an extra pair of ears listening to what the doctors say. Sometimes I feel overwhelmed by my emotions....

If we decide to go ahead with surgery (which is looking 80% likely), it will probably happen quite soon after Christmas. Although I'm glad I will be able to start the new year on my road to recovery, it also means that it will upset my studies, AGAIN! I'm starting to get used to it but doesn't make it any less frustrating. To think I'll be nearly 32 by the time I'm fully qualified!? I guess I should take comfort in knowing that I will have been  gaining some work experience (even if it has been mainly part-time) and will definitely have extensive life experience that no college or university can teach. It's a good thing I chose the field of Psychology. Probably one of the few professional areas where age is actually an advantage!

Spice up your life

Well after all the drama of the last few weeks and the still impending test results, at least there has been some slight joy in my life lately. I finally brought home my new dog last week. Her name is Pepper! Her racing name was Hot Stepper and she seemed to respond to Stepper in the kennels so I wanted to change it to something that still sounded familiar. Though to be honest she's only just starting to respond (slightly) so I could probably have changed it to something else. Never mind, Pepper is a cute name though apparently extremely common in the UK as about 3 people have already told me that "OMG, [insert relative's name here]'s dog was called Pepper!".

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. 

Quick update

Just a quick update this time. I've not forgotten about you but I've been pretty busy actually having a life (nice change!) My doctoral course has started, I'm attending more social events and have started going to the gym 3 times a week so my days are starting to fill up which is nice.

So the update is that I have a date for my IPSS. I have a pre-admissions assessment on Tuesday the 23rd of October. This is when you undergo a series of tests that check that you are suitable for the procedure e.g. blood pressure, weight, etc... Then, provided I get the all clear, I am being admitted on the 1st of November. The procedure will take place in the afternoon and should last a couple of hours max. I am required to stay overnight so they can monitor me. 

I've had mixed reviews about this test with some people saying it's a horrible experience and others saying it wasn't so bad. Thanks to a friend of mine I'm able to think about it in a positive way and am feeling more relaxed about the idea now. She encouraged me to visualise it as a positive experience by switching my way of thinking. Kinda like going from seeing it half empty to half full. So instead of thinking: "OMG, I'll be able to feel everything" (in a panicked, nervous way) think: "Wow, how fortunate I am that I'll be able to feel everything, they won't be doing anything without my knowledge" (in a calm, optimistic way). It's easier said than done but I've been practising every day and I really feel like I've made some progress. So much so that I will not be asking for full sedation, maybe just a little something to calm my nerves. We'll see...

Where do we go from here?

So as I've already mentioned several times, I have a confirmed Cushing's recurrence. However, this time around things aren't as straightforward. You see, although all my blood tests and urine collections are showing increased cortisol, nothing is visible on the MRIs which isn't good. It's not good because if the neurosurgeon cannot see anything on the MRI he doesn't know what his "target" is and although he could just go in and identify the tumour cells visually (apparently they look different to healthy cells), I'm not sure I trust him THAT much...

So this is where I'm at right now: my endo and other doctors will be discussing my case in their multi-disciplinary meeting to decide what the next course of action should be. At that meeting there are several key doctors such as endocrinologists, neurosurgeons and radiotherapists. As I mentioned in a previous posts there are several treatment options for Cushing's disease including neurosurgery, radiotherapy, adrenalectomy and medication. Therefore they will all be discussing what they think is most suitable considering the details of my case. 

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....

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.

Back in London town

It's been over a month since I last posted and a few things have happened since then. Firstly, I flew back to London on the 15th of July to attend my endocrinology appointment on the 17th. But after finding out that I was suffering from recurrence I had pretty much decided that I was moving back to London anyway. Although this was slightly disappointing as I'd hoped to stay in Hong Kong a little longer, I just felt more comfortable being treated in London where they have most of my medical history and more importantly, I speak the language (i.e. English).

Though I was unable to see my usual endo and had to wait for about an hour, the doctor I met with was very friendly, understanding and took the time to listen to me. He also confirmed (again) that he agreed with the diagnosis of Cushing's recurrence. He then went on to inform me that he wanted to act on it fairly quickly for 2 reasons. 1) Medication to treat Cushing's is toxic for your liver and very difficult to dose accurately therefore it is highly discouraged and 2) the neurosurgeon that did my first surgery and is arguably the best neuro in the UK is retiring soon. In fact, he told me he was retiring in 3 months which kinda freaked me out because I knew that I had my trips to France and the US planned and I really didn't want to have to cancel them. Luckily it turns out he isn't retiring until December but I only found that out a couple of days ago so until then I was stressing wondering whether I'd have to cancel my US trip and miss out on my friend's wedding.

So on the health front, the next step is a T3 MRI which is happening at the end of the month and if the tumour still isn't visible then I'll probably have to undergo IPSS which I think I've explained before. Basically it's a test where they thread a catheter up your thigh all the way to your brain so that they can take blood samples along the way and see where your body is excreting the cortisol. Apparently the procedure is as nasty as it sounds because you have to be awake for it! Needless to say, I pray I won't have to go through it...

Apart from the health worries (which have become part and parcel of my life), everything else is going pretty well. I am so proud to have been accepted on a Counselling Psychology course. I was supposed to start in September but which everything going on I think that I will be requesting for a January start instead. I think it's more sensible because I'm likely to have surgery in the next few months and recovery is no joke.

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...

Forget you

Here it is, Friday's Cushie music video. I'd like to say that I will keep making more but I'm not sure I will still have inspiration. But I will definitely try.
In the mean time, please enjoy this one and feel free to SHARE with as many people as you want/can.
It's important to raise awareness for Cushing's whether it be through a humorous way like this or by talking about the more serious side.

Have a great Friday and weekend!

BSc, MBPsS and MSocSc.

It's been a while since I last posted and I apologise for that. I went from posting every day in April to barely posting once a month! But I've been MIA for good reason. A lot has been happening especially as my Masters has now come to an end.

This challenging but extremely rewarding year culminated in a 3 day workshop in which we were encouraged to explore our inner selves and get in touch with our strengths and weaknesses. We did several very interesting exercises which I will go into in a different post. Sufficed to say that I realised that I'm stronger than I thought and that no matter how much others try to break me down, I will still keep going. The title of this post are actually the initials I can now add after my name! They stand for Bachelor of Science, Graduate member of the British Psychological Society and Master of Social Science. I achieved all of these in the last 2 years whilst simultaneously being diagnosed with Cushing's, undergoing neurosurgery and moving 6000 miles across the globe. Not too shabby if you ask me....

I can't believe how quickly this year in HK studying has gone by. It seems like only last month I was packing up my things in London and getting all excited about being back in the city I grew up in. And now, here I am, making a blog to sell all the stuff I bought when I moved here. If any of you happen to live in HK and are interested in some cheap items check out the blog: stephstuff4sale.blogspot.com

September in the USA

I will be publishing a new post tomorrow but today I just wanted to let you all know about the map I added to the bottom of my blog page. It's a big map of the USA and includes places I intend to visit when I go there in September.
If you fancy meeting up with me, are willing to travel to meet other Cushies or can offer me a place to stay, please add yourself to the map.

Don't forget to include your email address so that I can get in touch with you. (don't worry, only I will be able to see it!)

You can also access the map by clicking HERE.

See you in September!! :)

The Cushie song

Today is Friday and I have an extra special treat for you all. I've been working on this for the last couple of days. It's my first real video project and I did everything from video to audio so please bear with me.

I also wanted to thank those of you who joined and liked our new Facebook page (http://www.facebook.com/cushiesunited) and our YouTube channels.

Mine:
http://www.youtube.com/user/cushiesteph

and our CushiesUnite channel:
http://www.youtube.com/user/cushiesunite

I hope that you will pass all of these links and videos on so that we can all work towards raising awareness for Cushing's.

So for now, enjoy your Friday treat! I wanted to remind people that it's essential to maintain your sense of humour even when life throws you a curve ball.

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 30: This is not the end

This is not the end

Well here we are, day 30! I can't believe I got through this entire challenge blogging every day. I only resorted to other people's material on 4 or 5 posts. I must admit, I'm pretty proud of myself. And I'm so pleased with the response I've been getting. My blog hasn't exactly gone viral but I know that a few people have been reading it and they've given me some great feedback. Even my own parents have told me that they kept learning new things. This is a very positive sign for me and I'm so pleased I took part in this challenge.

Day 29: Overcompensation and the inferiority complex

Overcompensation and the inferiority complex

One thing I've noticed about a lot of movies or TV series, the fat person is always portrayed as funny and struggling with their weight. That is, if they want us to like the "fat person". If they don't, they will be sour, lazy, overindulgent people who seem to lack self control. Where is the overweight, well adjusted woman who enjoys having her large pizza but is also capable of working hard and being productive? Don't tell me she doesn't exist because I meet these kinds of people all the time!
The reality is that we are made to believe that being fat is something we should be ashamed of and should therefore compensate for in other ways. I'd like to say that I have not been brainwashed by this notion especially since I KNOW that my weight is due to a health problem however I'm just as "weak" as the others. What I mean by this is that because my weight is something I feel I have no power over and am very ashamed of, I tend to try and overcompensate for it in other ways.

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 27: Radiation therapy

Radiation therapy

Radiation can be given in small doses over a six-week period, or by a technique called stereotactic radiosurgery or gamma-knife radiation.

Day 26: Bilateral Adrenalectomy

Bilateral Adrenalectomy a.k.a. BLA

Many patients opt to have a BLA after several unsuccessful pituitary surgeries or when a pituitary tumour is not visible. Sometimes BLA is the first option if the Cushing's is caused by tumours on the adrenal glands. In my case, the tumour was on the pituitary gland but I don't know where the source of my recurrence is.
I have met several people who after 3 pituitary surgeries finally have a BLA as they still have Cushing's symptoms.

I couldn't find a good video explaining what BLA is as the only videos on YouTube are of the actual procedure which again, freaks me out! Feel free to have a look for yourself but I'm staying clear.

Here's a description from a website:

Open adrenalectomy
The surgeon may operate from any of four directions, depending on the exact problem and the patient's body type.

1. In the anterior approach, the surgeon cuts into the abdominal wall. Usually the incision will be horizontal, just under the rib cage. If the surgeon intends to operate on only one of the adrenal glands, the incision will run under just the right or the left side of the rib cage. Sometimes a vertical incision in the middle of the abdomen provides a better approach, especially if both adrenal glands are involved.
2. In the posterior approach, the surgeon cuts into the back, just beneath the rib cage. If both glands are to be removed, an incision is made on each side of the body. This approach is the most direct route to the adrenal glands, but it does not provide quite as clear a view of the surrounding structures as the anterior approach.
3. In the flank approach, the surgeon cuts into the patient's side. This is particularly useful in massively obese patients. If both glands need to be removed, the surgeon must remove one gland, repair the surgical wound, turn the patient onto the other side, and repeat the entire process.
4. The last approach involves an incision into the chest cavity, either with or without part of the incision into the abdominal cavity. It is used when the surgeon anticipates a very large tumor, or if the surgeon needs to examine or remove nearby structures as well.

Laparoscopic adrenalectomy

This technique does not require the surgeon to open the body cavity. Instead, four small incisions (about 0.5" [1.27 cm] diameter each) are made into a patient's flank, just under the rib cage. A laparoscope enabling the surgeon to visualize the inside of the abdominal cavity on a television monitor is placed through one of the incisions. The other incisions are for tubes that carry miniaturized versions of surgical tools. These tools are designed to be operated by manipulations that the surgeon makes outside the body.

I think that the majority of patients have Laparoscopic surgery now (thankfully!!)

So what are the pros and cons of this one?
Again, apart from the obvious risk from the surgery itself. Cons:

• Longer recovery time
• Bigger risk of infection as there are more wound sites
• Lifelong medication (your body will no longer produce cortisol therefore you must take medication to replace it)

I actually struggle to find many pros apart from the fact that it has high success rate of curing Cushing's! I know a few people who have had a BLA and now lead happy, healthy lives. But the truth is, this procedure scares me. The idea of removing my adrenal glands completely.... Well let's just say I'm exploring my other options first.

Day 25: Transphenoidal Surgery

Transphenoidal surgery


So, as some of you may recall I already underwent transphenoidal surgery back in September 2010. The procedure itself was not really painful but recovery was a long and painful process.

Rather than explaining it in words, I have found this video on YouTube which is very easy to understand and provides some good visuals. I opted not to show you a graphic/live version partly because I don't want to watch it myself. If I have to go through it again I don't think I can bear seeing it in such details. Feel free to search YouTube yourself for those videos.

Contrary to what this Dr says, after surgery you have a lot of packing (bandages) placed in your nose. This is done in order to prevent any kind of leakage from the wound which could be very serious. Actually, the most painful part of the procedure was removing the packing a couple of days after.

So now to the pros and cons. Well without going into extreme detail like listing all the possible things that could go wrong with the surgery itself e.g. adverse reaction to anaesthetic, damage to optic nerves or carotid arteries. Here are a couple of things that are a serious threat (I compiled this list using information I found from reliable sources i.e. people who've suffered these problems post-op)

• CSF leak (CerebroSpinal Fluid is the liquid that surrounds the brain and spinal cord) - I think it's pretty obvious why it would be a bad thing to be leaking brain fluid...
• Developing Diabetes Insipidus - This is not the same as the commonly known diabetes. This one causes excessive thirst and urination
• Developing a serious infection at the wound site i.e. in the sinus
• Damaging the pituitary gland - this can lead to many complications including messing up other hormones which are also critical to functioning

On the other hand, transphenoidal surgery has some advantages over other treatment options:

• Minimally invasive
• "Been there, done that" i.e. I know what to expect as I've been through it before
• Good chance of remission
• Less likely to have to be on medication for life

What do you think? Would you want to go through this? AGAIN!

Here's what I looked like after the first one

Day 24: BLA is not a qualification

BLA is not a qualification


In one of my Cushing's groups, a newbie was inquiring about what AI was. One of the group members humourously replied that it could stand for Artificial Insemination, Artificial Intelligence or in the Cushie context, Adrenal Insufficiency. Makes you realise context is everything.

After a quick search on Wikipedia, it turns out BLA could stand for:

• Baluchistan Liberation Army
• Bavarian Liberation Army
• Black Liberation Army
• or Bachelor of Liberal Arts

However, the BLA I'm referring to isn't a qualification or an army for that matter. No, I'm talking about Bilateral Adrenalectomy which is surgery to remove both adrenal glands. As I mentioned in a previous post, there is a chance I may be suffering from recurrence. I have had a few high cortisol levels which may indicate my Cushing's is back. Although this is obviously not great news, it kind of answers some questions as to why I wasn't losing any weight, my fitness level was decreasing even when I tried to exercise more and I was having some mild mood swings.

If I am suffering from recurrence there are a few options for me. Depending on what is causing it this time around I have several treatment options: undergo another transphenoidal surgery (neurosurgery to remove a tumour on the pituitary gland), a Bilateral Adrenalectomy (removing both adrenal glands), Radiation or Chemotherapy. Unfortunately medical therapy is not really a viable option with Cushing's as it does not offer a long term solution.

Over the next few days, I will go through the pros and cons of each option and explain the procedures in a bit more detail. Though these may not be necessary for me in the end as I'm not even sure I really have a recurrence, I think it is a good idea to educate people on treatment options. I hope you will find the information interesting and that it will help you realise how serious Cushing's and its treatment is.

Day 23: Drugs are bad mmkay

Drugs are bad mmkay


So here are the meds I've tried, have been on or currently am still on to "fix" my Cushing's and symptoms associated with it.

• Typical over the counter stuff for headaches e.g. Paracetamol and Ibuprofen
• Anti-depressants for off-label use as sleeping aids
• Melatonin for sleep
• Antacids
• Lansoprazole for stomach acidity
• Enalipril for high blood pressure
• Some diuretic to help make the BP med more effective
• Hydrocortisone (cortisol replacement)
• Dexamethasone for cortisol testing
• Tetralysal for acne
• Benadryl (which is suppose to be for hayfever) off-label use for headaches

I also tried some "natural" remedies such as Flowers by Bach for stress relief and Chromium Picolinate to reduce appetite.

The list actually isn't that bad but I just hate the fact that for the last few years I've had to take pills every day. But I shouldn't complain too much. If I end up having to have a BLA I will need to take more than 1 pill every day!

Come back tomorrow to find out what a BLA is and why I might need one.

Day 22: But who's keeping score?

But who's keeping score?


One of the suggested topic from the Cushing's website is to write about what we've gone through to try to be cured. I am not going to write about my long journey to a diagnosis again which you can read by clicking HERE if you want, however I will summarise all of the tests and interventions I've had so far (and that I can remember).

2009:

• 2 x "regular" blood draws to check cortisol levels
• 2 x 24hr Urinary Free Cortisol collection (collect all urine being passed for 24hrs)
• Low dose Dexamethasone suppression test (take dexamethasone doses and then have blood drawn at 8am)
• *edit* I forgot to mention that I also had a CT done of my kidneys

2010:

• High dose Dexamethasone suppression test (take dexamethasone doses and have blood drawn every morning at 8am over 2 days)
• 3 x MRIs, two without contrast and one with contrast (meaning having dye injected into the veins)
• 2 x 8am fasting glucose blood tests 
• 8 (maybe more) blood draws to check cortisol and other hormone levels
• Transphenoidal surgery (to remove the tumour)

2011:

• Low dose Dexamethasone suppression test
• 3 x 24hr UFC (urine collection)
• Bone density scan
• 1 blood draw to check baseline hormone levels

2012 (so far):

• 1 x 8am fasting blood glucose and cortisol level check
• 3 x 24hr UFC (urine collection)
• Low dose dexamethasone suppression test
• 1 x MRI

All I can say is WOW!!!! And considering I started testing in September 2009 and we're only in April 2012, I can't even imagine the countless amounts of interventions those who are testing for several years go through. I'd also like to point out that I have not included in this list all of the blood tests I did before when they suspected everything from PCOS to Thyroid issues.

No wonder I hate needles now and when I get to the blood draw clinic, if I see the nurse wearing a TRAINEE badge, I ask to change. Let someone else be a pin cushion for once...

Tomorrow's post: MEDS!

Day 21: Here we go again

Here we go again


So I finally heard back from my endo yesterday. I had emailed her back in February when I received the letter about my test results and it appears she refuses to reply by email opting for the ever so slow snail mail option!
Anyway, she confirmed that the 2 x 24hr UFC tests I did back in January showed elevated levels of cortisol (no idea what happened to my 3rd pee jug!? Sometimes I don't know why I bother...) and that I failed to suppress in the low dose dexamethasone test. For those who don't speak Cushie test lingo, UFC stands for Urinary Free Cortisol and is one of the standard tests for Cushing's. The lab tests the amount of cortisol present in 24hours worth of urine because your levels rise and fall naturally during the day. By calculating the average concentration, the lab is able to determine whether the result is low, normal or high. In my case, the results were apparently higher than normal. I also did an overnight dexamethasone suppression test which is basically a way to measure your adrenal glands response. When you are administered a dose of dexamethasone, your body should suppress its production of cortisol in response, however this is not the case if you have Cushing's. For more information about testing for Cushing's (or any other Cushing's related info for that matter) please visit the following website which is packed full of useful information: www.cushings-help.com

I know the drill, I've been through all these tests before. I know that the next logical step is a high dose dexamethasone suppression test to determine whether the source of my excess cortisol is indeed the pituitary gland. There are other possible sources of Cushing's such as a tumour on the adrenal glands or somewhere else. I will also probably have to have another MRI though I had one not long ago in HK and I am seeing a neurosurgeon about the results at the end of the month.

I am in a tough spot right now because I obviously need to tend to my health but there isn't much I can do here in HK. I have that appointment on the 30th and I also have an endo appointment in June but to be honest there isn't much point in getting anything started here now since I've decided I will be moving back to London. I am seeing my endo in London on the 17th of July and that will probably be when things really get moving.

In the meantime, I have to try and stay focused on the tasks at hand which are finishing my masters, applying to the DPsych (Professional doctorate in counselling psychology) and planning my summer holidays. I'm trying hard to stay positive though I have to be honest, sometimes it's tough and I really feel on the verge of a breakdown... I'm just grateful to have my parents so close as they help me deal and keep me sane. I just wish I had more of my friends around for support although I appreciate the virtual and long-distance support I receive.

Day 20: Through grief comes growth

Through grief comes growth

I am currently attending a workshop at my University on grief therapy for traumatic deaths. For those of you who do not know what that is, a traumatic death is one that occurs suddenly or unexpectedly e.g. car accident, suicide, homicide, etc...

Though I am fortunate enough to not have experienced much death in my life so far the process of grieving for a lost loved one is a bit like grieving for the loss of the "healthy self". When you become ill even if you have a chance of recovery, you have to learn to deal with the loss of some aspects of your previous life. In my case for example, I have to accept that I will never be able to wear a bikini again. Even if I manage to lose enough weight to find one that fits, the idea of bearing my stretch mark covered body just doesn't appeal. The truth is, it used to bother me a lot, and some days it still does (especially when I see photos of slender and beautiful models at the beach) but really there's so much more to life and at the end of the day, I don't really care anymore!

Something interesting the lecturer said today which is very true is that "Through grief comes growth". As he reminded us, usually when everything is going well in our lives we just plod along and leave things as they are. If it ain't broke, don't fix it, right? But when something happens, like someone we love dies, or a part of us dies, we are forced to re-examine our life. Some people even suffer an existential crisis i.e. search for meaning in their lives. Through this search, grief and re-examining, we can learn to grow. I have certainly grown a lot through the adversities in my life.

So I invite you now to think back on the major changes in your life, the times when you feel you grew and matured the most. Was it when everything was fine or when you were super happy? Or was it when life kicked you in the nuts?
If you're brave enough, feel free to share in the comments section and we can share our experiences. 
I hope you'll be able to look back on the hard times and rather than feel sad or regretful, be grateful and appreciative of the fact that you made it through and are now on the other side. 
 And if like me you're not quite out of the woods yet and are struggling with the fight, look back so that you remind yourself that you've faced adversity before and you are strong enough to face it again! 

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 18: TLSC 3

The lighter side of Cushing's 3


Here are some more cartoons that humorously depict having a rare disease:

Day 17: TLSC 2

The lighter side of Cushing's 2 (TLSC 2)


I'm sure you've seen a few of these floating around. The "What others think I do" images which have been created to depict several jobs or situations. Here's a couple on illness:

Day 16: The lighter side of Cushing's

The lighter side of Cushing's (TLSC)


I have a very busy week this week with the last few assignments of my course due soon. Therefore this week will be much lighter posting wise. Because I love to laugh and especially enjoy sarcastic, dry and sometimes even dark humour, I have decided that for the next few days I would post various cartoons, videos, etc. which humorously depict what it's like to have Cushing's (or some other chronic illness). Although these will (hopefully) make you laugh, I also hope that they will make you stop and think a bit more about what it's like being in my shoes. Perhaps you will not find everything funny as some jokes will be so far from what you understand/experience, but I hope you will still enjoy them.

I'd like to start today with the following which really made me laugh out loud:

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 13: Luck be a lady tonight

Luck be a lady tonight


It's Friday the 13th! For some people today can either be lucky or unlucky and for others it's just another day. When you really think about it, isn't the concept of "luck" interesting? If you win the lottery, you are a lucky person because the odds of winning are anything from 1 in 114 million to 1 in 600 million. Yet I have Cushing's disease which carries 4 in 1 million odds and some would consider me unlucky because of it. But I could just have easily have been born with a chromosomal disorder as these affect 7 in every 1000 infants! Am I really unlucky because of Cushing's or should I instead think that I am lucky because I was blessed with so many other wonderful things which have helped me cope with it? I was fortunate enough to be born in a good family, brought up by two parents who love me, have all my arms and legs and my 5 senses function properly. I have never experienced war, torture, starvation or political oppression. All in all I reckon I am pretty lucky!

It's funny because today my washing machine suddenly stopped working. I panicked at first because I thought it was broken but it turned out it I only needed to reset the fuse box. Yesterday my water heater was acting up but it worked fine after switching it off and on again at the mains. I'm sure many of you have experienced internet or cable/satellite tv problems and when you call technical support the first thing they ask you is "Have you tried switching it off and on again?". So many things in our lives can be fixed by a simple "reset". This got me thinking, what if you could "reset" your life? Imagine if when something started malfunctioning you could switch it off and on again? Reboot it in a way. Wouldn't that be amazing? I started thinking back on my life, trying to figure out at which point I would have attempted to reboot. When I first started gaining weight and being depressed? When I was bullied in high school? When I wet the bed when I was 8 years old? I started to realise that if there was such a thing as a reset button, I would probably be pushing it all the time. But then I really thought about it some more and took into consideration my thoughts about luck and odds. What if you were given a reset button but by pushing it, you brought all the "counters" back to zero therefore it's as if the dice of fate were thrown again. What I mean by this is that you would run the risk of "tempting fate". In this lifetime I was blessed with a beautiful smile, a good sense of humour, a caring personality and Cushing's disease, what's to say that if I press the reset button I don't get stuck with a big ugly nose and a low IQ? What I'm trying to get at is that although your life might not always seem great, think about the million other ways it could be worse and you're sure to feel better about it! :)

The truth is, I'm not sure I really believe in luck, fate, etc... Some things are predetermined by genetics, others are outside of your control, and some you have complete control over. Everything works together to create the wonderful and interesting life that you lead. Sure, I could have not had Cushing's, but then I might not have turned into the person I am today. Perhaps if I didn't have Cushing's I might have had some other terrible disease. Who knows?
The fact of the matter is that many things in life are random but what isn't is how we choose to deal with them. As human beings we have ultimate freedom and never ending choice. So I choose life, love and happiness!

Day 12: A picture is worth a thousand words...

A picture is worth a thousand words...


When I signed up for this challenge I seriously underestimated how hard it would be to come up with topics for every post! I just got back from holiday and have tons of uni work to get on with. So I've decided that instead of trying to write too much, I would simply post some of my holiday pics.
These were taken in Singapore and Malaysia.