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.

Learning to love yourself, it is the greatest love of all...

I don't know why but lately I've only been posting every 2 months or so. Actually, that's a lie, I do know why! My posts have been far more infrequent because of a combination of things: I have less to talk/write about, and sometimes I just don't feel like writing about all the stuff that's happening in my life!

You're probably thinking to yourself, well how is that a problem? Does it really matter if you don't write a blog post about yourself? And the answer is: Of course not!! In fact, I'm not even sure how many people actually READ my blog except maybe for my mum and sister (thanks ladies!). But I'd like to think that this blog is about more than just that. More than just a venue for me to vent out my frustrations, disappointments and quasi-philosophical ramblings. I'd like to think that sometimes, someone out there stumbles upon this blog and finds comfort in knowing that they're not alone. That someone else is going through something similar to them and that we all deal with it in our own messed up ways. I'd like to think that I can offer hope even if my posts aren't always rosy. After all, hope and optimism aren't about unrealistic aspirations but about seeing the glass half full when it seems half empty. If anything, maybe reading about my misfortune makes someone feel better about themselves which is always a good thing...