Day 1: I write about my health because...

So here's the first of my 30 posts! I decided to start off with one of the topic suggestions given to me on the Cushing's help and support website (www.cushie.info).

I write about my health because....

1. It helps me cope. The truth is, writing on my blog has been extremely cathartic for me. Sure I have friends and family who ask how I feel and I am quite happy and open to talk about it with anyone but there's a difference between talking about something and writing about it. Firstly, when you write there's no one there to interrupt you. You can just go with the flow, let everything come out! Also, you don't have to worry about whether you will offend any one. Sure, you have to be aware that anyone can read your blog but at least if they are offended or confused by what you say you don't have to see it on their faces. Sometimes when I'm talking about my disease with people I can't help but observe their facial expressions and think: they really don't understand me! or she looks bored by my ramblings! Sometimes I feel like I'm hogging the conversation going on and on about myself so in this way, if you're bored you can navigate away from my blog, I won't know and won't be upset!
   Also, writing on a blog gives you the freedom to be spontaneous and post as you type or you can really think about what you're typing and rework it until you are happy with the result. Usually I just type what I think/feel that day. Sure I make some corrections to ensure the flow is good but overall I try and keep it as raw as possible so that my readers get the "real me". The only parts of my blog I pay very close attention to are the static information parts because I think it is important to give accurate details. After all, many will come to my blog in search for answers or to find a kindred spirit. Which leads me to reason 2.
2. It helps me connect with others like me. Although it seems like blogs are one way streets i.e. the blogger writes and the reader reads. I have actually made several friends through it. In fact, I was fortunate enough to be contacted by someone who lives in Hong Kong (where I am at the moment) which is great because it means I had an opportunity to meet someone in real life who understands what I've been through. It is difficult to explain the isolation one feels when suffering from a rare disease. If I could say I have something that everyone's heard about I think people would have a better idea of how to react. Whereas now, most people just don't understand. The majority think that I'm overweight which is what has caused my health problems. They don't understand that it is my health problems that have made me overweight. I'm so grateful that thanks to the internet I am able to make connections with people all across the globe. I have made friends in NZ, OZ, Canada, USA, Hungary, etc.
3. It helps others realise they're not alone. When I was first diagnosed with Cushing's, the hardest thing was trying to talk to people about it and trying to get information on the disease. As I've mentioned several times, it's a rare disease and even doctors have trouble understanding it. To tell you the truth, I had never really liked blogs before. I thought they were just another way for people to draw attention to themselves (and not necessarily in a good way!) and didn't really think they could contribute anything useful. Boy was I wrong!! As I started discovering the world of blogging and more importantly finding blogs from people who have/had the same disease as me, I realised how amazing the internet is. It was comforting to know that somewhere, someone else could relate to how I was feeling. As I began reading more and more blogs, it felt like I was reading my own thoughts. I think that most people underestimate how good it is to feel "normal"! As my blog tagline says: I always wanted to be special but a rare disease wasn't quite what I had in mind... Thanks to Cushing's I'm 1 in a million (actually the prevalence rates are difficult to determine but it's around 2-5 per million) but it's not as exciting as it sounds. We like being special when it's in a good way but no one likes to be different when it carries negative consequences. So finding other blogs helps remind me and others that we are not alone and that others are going through something very similar. (click here for a list of other Cushie bloggers including those taking part in this challenge)
4. It helps raise awareness. Sure, most people who find my blog already have some awareness about Cushing's because they probably found it through searching google or something similar. But there is still the off chance that someone might stumble upon it by accident!? More importantly, my friends and family read it and pass it on to others which is how it helps. I think it's fair to say that my own family and friends have learned so much more about this disease and how I deal with it through my blog. I'd like to think that for every one person I can sensitise to the cause, I increase the chances of reaching more people by more than 1. 

Cushing's Awareness Challenge

Great news 

my dear readers, you're in for a bloggin' treat! I have decided to sign up for the Cushing's Awareness Challenge which challenges Cushie bloggers all over the world to blog 30 posts for 30 days in April.
Some of you may be wondering what the point of this challenge is so let me briefly explain...

April 8th is Cushing's Awareness Day. This date was chosen because it is the birthday of Dr Harvey William Cushing, the pioneer neurosurgeon who first described the disease.
The challenge entails blogging 30 posts related to Cushing's during the entire month of April e.g. what you would tell trainee doctors if you could, what Cushing's has taken from you, how you've grown/developed since suffering from Cushing's, etc...

I will therefore save some of my updates and the final "chapters" of my London trip for the challenge as 30 posts is a lot!!

But I think this is a great opportunity for me, not just to force myself to write more frequently on my blog, but to try and raise awareness. A few of us are taking part and we're hoping that all this Cushie activity in the blogosphere will stir some interest. So please show your support by reading and sharing as much as possible.

Also, feel free to suggest some post topics!!? I am not one to run out of things to say but I am happy to get some ideas/inspiration! You can post them in the comments section just below.

*Edit* I just realised how tough this is going to be because I looked through my post history and it appears I've written 34 in total since I started this blog over a year ago!! Oh my, what have I gotten myself into?

You want me to do what!?

So as promised, here's the pee story....

Following some blood results I received in which my cortisol levels were a bit high, the doctor ordered me to complete 3 x 24hr UFC which if you remember is when you collect all of the urine you pass within 24hrs. Now I don't know if you can imagine but collecting urine for 3 consecutive days isn't much fun!
It was particularly annoying because these were the last few days I had in London and I had many activities planned including meeting up with friends to go out.

So Saturday night approaches and I decide that I'm not going to let this ruin my plans. I head out to meet my friend in Camden with a small plastic bottle and funnel in tow so that I can collect my evening's pee. Once at the restaurant, I try not to drink too much during our meal which is kinda hard when you're eating salty and slightly spicy mezze! After a pleasant dinner, we head over to a bar and I manage to hold out for quite a while but eventually the urge to pee overwhelms me and I have to relieve myself. "No problem", I planned for this and luckily the bar's toilets are pretty clean and spacious, allowing for urine collection with minimum spillage.

In fact, the evening is going so well and I'm feeling so positive that my friend and I decide to let loose and head over to a club. As we make our way there, we agree that my friend should enter after me because she's wearing trainers and clubs in London can be quite fussy about dress codes.
What I hadn't anticipated was the bouncer's request to search through my bag!!! I was so preoccupied worrying about whether my friend would get away with her trainers that I forgot that bouncers ALWAYS check your handbag when you enter a club.

So there I am, standing in front of this 6ft bloke who's ruffling through my bag and all of a sudden it dawns on me that he's going to find the pee bottle!!! But because he's already looking through it, I try and act as natural as possible and just let him get on with it, hoping that somehow miraculously he won't notice it.
Well of course he DOES notice it and in fact is quite curious as to what it is.
He pulls it out of my bag and innocently inquires "What is this?" Now at this point I have to say I am damn proud as to how fast I reacted. I nonchalently answered: "Oh, that's just my medicine, it's a kind of herbal tea drink that I have to take.". The very understanding bouncer then says "Ok, fair enough but you're going to have to drink it all before you come in.", "WHAT!?" (I screamed in my mind!), "Oh I'm afraid I can't do that sir, you see it's suppose to be taken gradually. I have to drink it throughout the night, not all in one go."  "I'm sorry miss, I'm afraid I can't let you in!. "Oh that's fine I completely understand, no problem" and I quickly walk away signalling my friend to follow me.

Now let me just say, at this point my heart was beating out of my chest. I just wanted to get as far away from there as possible!! I then explained everything to my friend who couldn't help but, well for lack of a better expression: piss herself i.e. laugh so hard!! She and I both realised how ridiculously funny the situation had been and as she pointed out, I was pretty damn quick at coming up with an answer because even she didn't suspect anything.
For this I give props to all the years of drama improvisation I've done. I guess it does pay off to be able to think creatively on your feet!
And I'm grateful that it went the way it did because so many things could have gone wrong. What would I have done if the bottle leaked or he had decided to open it up to smell it? Just thinking about it makes me laugh and realise that sometimes life is stranger/funnier than fiction! It's like I was in one of those slapstick comedy movies.

However, all joking aside this situation highlights the kinds of things us Cushie's come up against. Sure it's funny when we look back on it but sometimes it's no laughing matter. It's heartbreaking when an illness impairs your daily life by not allowing you to just live it how you want to...

Unfortunately this story also has a sad ending. Today, I finally received the letter I'd been waiting on since I submitted all my urine jugs and had all those blood tests. Turns out, my cortisol levels are elevated again therefore I have to go through more tests to confirm or rule out recurrence. This is obviously a devastating blow but I'm trying to stay optimistic. I'm not sure what the next steps will be as it's still a bit of a shock for me right now but rest assured that I'm staying strong and will keep focusing on the things that matter.

On a positive note, today wasn't all bad as my 2nd nephew was born this morning. He is healthy and my brother, his wife and their 1st son are thrilled.

Guess who's back?

So I have to begin this post by apologising to my friends and family who pointed out that they too read my blog! Sorry guys, it's not that I don't appreciate you, I guess I just underestimated the size of my fan base
So, as promised, here's a snippet of what happened during my trip back to London. I had an appointment with my endo and I shared my concerns with her. She was very understanding and reassuring but suggested we conduct more tests in order to decide whether I could reduce my hydrocortisone replacement dose or not. For those of you who don't remember, hydrocortisone, is the medication I have been taking to replace the cortisol that my body is supposedly not producing as much of, now that I've had my surgery. The reason you take it is because if your body doesn't produce enough cortisol on its own it can be very serious, even deadly.
But if you recall from some of my previous posts, most of my Cushie friends have suggested that I shouldn't be on hydro for this long after surgery and that it might be one of the factors hindering my weight loss.
So anyway, back to the appointment...

The endo suggests several blood tests and tells me that depending on the results we can discuss changing my dosage. So after 2 days of waking up ridiculously early and fasting for the blood tests, I show up on day 3 to do a procedure which involves having blood drawn every 2hrs in order to observe changes. I have to admit, I was NOT looking forward to the procedure but what ensued wasn't particularly pleasant either.
The nurse comes in and tells me that he's received an email from my endo late last night and that she reviewed the results of my blood tests and lo and behold, my cortisol is high!!!
Unfortunately, for me this is pretty bad news as it could signal recurrence.... On the plus side, I don't have to do that hideous blood draining procedure.

The nurse goes on to tell me that the endo has therefore ordered me to complete 3 days of 24hr urine collection and finish it off with a dexamethasone suppression test. FUN TIMES!!!
At this point I'm trying to keep it together and not let my mind go to all these horrible places e.g. "your Cushing's in back!" but it's kinda hard to stay optimistic. So I focus on what the nurse is telling me and try not to get too crazy by reminding myself that cortisol levels fluctuate easily and that blood tests aren't conclusive.
It also helped that I asked the nurse what the exact result was and the number he gave me actually still falls into "normal" range. I guess my endo is concerned because she expected me to be on the low side but I'm convincing myself that this just means my pituitary is functioning normally now and that's good news.

Next episode: Urine collection or, the joys of being a Cushie.