Getting Restless

So after my Wednesday of piss collection, I sheepishly handed in 3 litres of the good stuff to the PIU at Kings on Thurs. The cab journey there was possibly the most inwardly awkward experiences of my life. Damilola the Uber driver had no idea the sloshing sound he could hear every time he went round the corner was coming from a container full of piss I was hugging. He was trying to make conversation about my day, my studies etc but the entire time I was just thinking 'I'm carrying 24 hours worth of piss on my lap'.

Anyway so when I handed it in I asked for a rough estimate of when they next need me in so I can plan when I can go and pack up all my shit in Manchester (didn't use those exact terms). She just stared at my piss container on the desk in front of her and said it usually takes two weeks for 24 Urine-Free test results to come back and they'll only be able to know what the next step is once the results are in. So, I now have two weeks to wait! TWO WEEKS! I was having a lovely time in Manchester and I travelled back down to spend 24 hours pissing in a bottle and you don't need me again for another two weeks! I don't know why my consultant said she wants me to have surgery by Christmas... doesn't seem likely.

But that suits me just fine. I really dont want surgery before Christmas. I wanna be able to actually enjoy the celebrations. There are so many good things going on in December! I'll happily have it after though, knowing that I actually have the potential to be a normal person without all these ailments is making me restless and I'd to be normal as soon as possible please.

Anyway, so no developments, really, except for the realisation that surgery is most likely to be after Christmas rather than before (which I'm more than happy about).

Being Hit All At Once

I'm on the train back home from my Warehouse Weekend/Manchester holiday, and now that I'm on my own and I've only got the soulful sound of Adele's new album and my thoughts to listen to, the reality of leaving uni has hit me all at once and I am definitely feeling an emotional comedown.

Despite the high dose of Dexamethasone well and truly screwing my insides over (details of which are unnecessary), I had the best time being reunited with my home friends. And knowing I was taking an interruption from uni meant I was able to be completely carefree! It was so nice to not worry about work or budgets and actually enjoy the city and the time I had there... But now I miss them again *insert tears here*.

Then when home friends went home it struck me that I'm grasping on to time I have to spend with uni friends too... While I was there I selfishly but unregrettably discouraged any of them going into lectures and made them spend time with me instead. Heh. But there were so many times this week that we'd just be sitting watching something trashy on the tele (80% of the time) and I'd think 'you're not gonna have this little comforting home for much longer' which made me sad. I signed over the tenancy papers yesterday so tiny Coops can have my room (thank god, cause that rent is a bitch) and although it is all very exciting, I'm very jealous of them being together in our little house. I'm gonna miss decorating the Christmas tree, the annual ice skating trip, the christmas meal! I even feel sad about not being there at exam time when were stressed and under pressure and end up crying for no reason. Waaaaaaaaaaaaa

Before I was feeling all very (too) optimistic about taking a break from uni. It was just something that I had to do for practical reasons, it wasnt the end of the world... But now I'm on my fourth run of Adele's album and IT FEELS LIKE THE END OF THE WORLD. 

I know I'll be going back up in a couple of weeks but knowing that that'll be the final trip and my journey back will mark the end of my year (already) and moving back to london hurts my heart. I really was starting to love uni. In the words of Hannah Powell- 'fucks sake...! Life...!' 

Overnight Dexamethasone Suppression Test - Day 2

So, as expected, testing was extremely uneventful yet again. Same thing happened, turned up, got my blood taken (but by a lady called Lay this time, just to add a little excitement into the mix)

I did experience a little side effect of the Dexamethasone last night though. I don't know much about the drug but reading the leaflet they gave me it seemed like its serious risks were that it could turn you loopy. Either with depression and suicidal thoughts, manic highs, or hallucinations and 'disturbing thoughts'. I never reached any of those levels but after taking 1mg before I went to bed I experienced some funky dreams. I can't remember the ones about the foam finger or the new lip balm i just bought in detail but I do remember the one about my teeth. I had one where I was sitting on the sofa with my mum complaining that they were aching. So i was prodding them... they were rubbery like brown rice, and I could slightly bend them. Next thing I know they were popping out! So I leaned over the table and scooped them all out my mouth. Heard that dreaming about loosing teeth was a sign of losing control of your life. I hope I dreamt that because of the Dexamethasone and not because I am, in fact, losing control of my life. I have not got the energy for more shit to be thrown my way. 

Next I have to take eight times the amount I did last night... I dread to think what kind of messed up shit my brain is gonna muster up this time.

Overnight Dexamethasone Suppression Test Day 3

Unfortunately and expectedly, another boring post. No messed up dreams last night (that I can remember anyway). All thats happened is that I went in and had two more vials of fresh blood taken. Can't remember what the name of the lady was called today but I liked her the most, she was the nicest. Told me i had a nice juicy vien. Which kinda compensated for the fact the injection hurt the most (not her fault, kinda expected when theyve prodded at the same spot 3 times in a row). 

I keep having spots of doubt about whether or not I even have this disease, and keep getting paranoid that I've jumped the gun and made a big embarrassing hoo haa out of nothing because before they find the cause, no official diagnosis can be made... but last night, despite feeling lathargic and knowing I had a long day ahead of me today, the insomnia, caused by elevated cortisol levels struck again. If there's one thing underpinning this illness it's bloody inconvenience. In a normal person Dexamethasone would have an effect on cortisol levels, with 8mg of it and still getting an unwanted buzzing brain at night despite feeling drained, I'm pretty sure I've got a little friend growing on my Pituitary. 

But lets not think about that bastard for a little while now. Despite having about 60% of the sleep I actually need, I'm on my way up to Manchester ready to let loose and spend time with my friends. Back on Tuesday night, ready to collect my piss on Wednesday and hand it in on Thurs. Brace yourself PIU, youre in for a treat!

Overnight Dexamethasone Suppression Test - Day 1

I'll be writing day by day updates about this test but, based on today, I reckon the whole sagas gonna be a little anticlimactic, really. Today I went in at 10 to 9 in the morning, a little exicted to be taking my first steps to recovery but the appointment was boring. Unexciting and dry.... No funny stories, no Charlotte Cakebreads... Not even the smallest of anicdotes like a nurse with funky breath. I was just welcomed by a lady called Kemi who was given a sheet which told her to take my blood... So she did. 

Then another man came in and asked me if I'd take part in a clinical trial. He explained it all to me and I agreed. It was to see if testing saliva was accurate enough for testing cortisol levels so in future they wont require to do so many blood tests and the whole experience can be made a lot easier and enjoyable (yeah, id rather not have to take 3 hours out my day for a 30 second procedure for 3 days in a row). All i had to do was suck on a little foam finger for a minute. I wasnt allowed to touch it though, so pointing it out my mouth and having to aim for it to go back into the tube while he was watching me was kinda embarrassing. He gave me 2 other vials with 2 more foam fingers to take home and have a good old chew on, one before I take the 1mg of Dexamethasone tonight and one in the morning before I brush my teeth.

So yeah, testing has been pretty boring and uneventful so far. Next test after this one is the 24 Urine-Free Cortisol Test next week. They gave me a FIVE LITRE bottle to fill up. I can't WAIT to make the journey to hand that one in.

November 16th: First Tests Booked!

I finally got the call scheduling my tests for this week (I know it's only been three days but I'm impatient). It was from PIU (Planned Investigations Unit) at King's and she began by saying I needed to come in for 3 days. Ru-oh. First thing I think is that if they need me for 3 days it's because the tests are gonna be intense and unpleasant and uncomfortable and bleugh. But the moons are re-aligning and my mind is put at ease when she says that it's only a Dexamethasone Suppression test (I'd tried to do some research on the testing process and I'd come across this one before). The only reason they need me for 3 days is because they need to take my blood for 3 consecutive days, not because i have to undergo any unpleasant procedures.

I'll need to go in on Wednesday morning, Thursday morning and Friday morning. Which means that I won't have to miss any of the Warehouse Weekend!!!! Win! I know I've become a bit obsessive about it but it'll probably be my last chance for a huge blowout for a long time. And it's a rarity that the little group we've got going are actually together. The moons are finally aligning again!

Compiling what I've read and what I've been told this is what I've got to expect this week:
Wednesday- blood test, given 1mg of Dexamethasone between 11pm and midnight
Thursday- blood test in the morning, given 8mg of Dexamethasone between 11pm and midnight
Friday- blood test in the morning

And friday afternoon- start the weekend!! *BBM dancing face*

The purpose of the Dexamethasone Suppression Test is to further investigate the extent of my Cushing's Syndrome. In a normal patient, small doses of Dexamethasone will reduce their levels of cortisol, in a patient with Cushing's syndrome, it won't.

Then, next week, I have to conduct a 24 hour Urine-free Cortisol test. I'll have to collect my pee in a bottle for 24 hours, keep it in the fridge and hand in the next day. Waaaaahey! Time to order myself a funnel. At the time of the phonecall, I was in a stuffy Sports Direct in central London standing directly opposite a useless till worker so trying discuss the logistics of collection and transportation of my pee discretely was very awkward indeed. Lucky they've started playing the tacky christmas music at about ten thousand decibels already though, otherwise the whole of central london may have had to hear me discuss my piss with a stranger over the phone.

I'm glad the tests this week are non-invasive and just to get a better picture of my syndrome, the one's investigating for the disease and looking for the tumour don't sound as nice. But I'm not gonna jump the gun or even think about them yet...

**Since writing this, I've learnt more about the Dexamethasone Suppression Test and on top of indicating the extent of my hypercortisolism, it can also indicate the cause of my hypercortisolism. Although low doses of Dexamethasone do not affect people with Cushing's syndrome, the high dose can indicate where the tumour will be:
-There will be no effect on cortisol levels if the cause is Adrenal or Ectopic Cushing's Syndrome (tumours in the adrenal or lungs)
-There will be normal suppression of cortisol levels if cause Cushing's Disease (a tumour in the pituitary gland)

THE MOONS!!!

I briefly mentioned visiting my poorly pops (Grandma) in my last post but didn't expand on it because it's an entirely different issue and has nothing to do with Cushing's.

BUT HOW WEIRD IS THIS, RIGHT?

My Pops is 81, still works, does tai chi, climbs 3 flights of stairs up to her bedroom etc., a usually very active woman. But a couple of weeks ago she suddenly turned. She's been weak, nauseas, confused, not eating, in pain, dizzy, vomiting, dairrhea etc. but all the doctors and nurses detected and knew was that her sodium levels were low...
Trying to find the cause, it turns out she's got Addison's Disease. A cortisol deficiency. The opposite of Cushing's. What the hell are the chances?!?! Same week, same family, same hormone. One has excess and one is deficient. And there's nothing on the internet to say they're hereditary. There is something going on with the moons, I'm telling you.

It can be treated by taking cortisol supplements, of which they've started administering and she is already in much better health, by the way. My tai chi pop's will be out and back to being a badass in no time.