So its been a long while since I wrote another blog post (again) but this time its for the complete opposite reason... I've been busy (but I am also still lazy)! A few days after writing the last post whining and moaning about my lack of energy and general cruddy-ness something in the water changed and I was suddenly given the key to unlock all my energy again! No doubt about it, I could still sleep until I had a reason I had to get up but I suddenly felt like me again! Unfortunately what came with this was also the inability to sleep before 5am and needing to pee every three and a half minutes so, in the back of my head I kind of knew it was all down to my cortisol levels skyrocketing again as opposed to me finally adjusting to my medication. But to be honest, compared to how I was feeling with lowered levels, I wanted to give maintaining my health the big middle finger. I felt as if I had just spent all my parents money traveling around southeast asia and found myself again. I was loving it. I spent a week up in Manchester, saw Adele (queen, SLAY), hung out with my family and friends and got back in the kitchen. My life was enjoyable again!
But as I said, deep down I knew that feeling like this was a great sign socially, but most probably a bad sign medically, so when I handed in my what weighed like a gallon of pee again at the start of my next day curve test I was apprehensive. I had my neurosurgeon meeting scheduled for the next week and I was worried the results will come back too high and my surgery would have to be postponed even further (I think four boring months is enough). But my doll Kemi reassured me and said that if it comes back high they're most likely to just increase my medication rather than delaying the op.
The next week rolls around and it's time for my all awaited neurosurgeon meeting. I was PUMPED. It was what I had been waiting for after all this time (surgery before christmas my arse). So when the name of the doctor it said my meeting would be lead by got rubbed off the whiteboard I was worried. All we got told was he 'isn't in today'. Fuming. I really just wanted to get it over and done with. Give me a date, give me a to-do list and send me on my way. Meet you in theatre, doc. Quit playing with my emotions like this!!! Anyway, so half an hour after my scheduled appointment time I got called in by some guy I'd never seen before (not really a 'team' meeting at all) who proceeded to show me my MRI and tell me a lot of basic stuff I already knew. 'This is your nose, these are your eyes, and this is your brain...'. He then went on to tell me the only way to treat is through surgery and booked me with a hot date with the operating table on April 26th. Wahey!! Then, when I queried about the results of my last tests he got them up, looked at them and went out the room to consult someone else. Ding ding ding, just as I expected... My cortisol has shot up again.
A new man came in and explained a lot of things I already knew, again. 'You normally feel like this because you have high cortisol levels and then you felt like this because your levels were lower and your body wasn't used to it blah blah blah'. 'While you were feeling bad your levels were lowered and in the most recent test they're high again blah blah blah' Yes, come on, get to the point. I know this. And then he popped the question 'now do you want me to be honest'. Rhetoric question? Yeah, I'd kind of like to know what's going on please. 'You're not taking your medication'.
I wanted to slap his stupid glasses of his face.
Actually, Mr Doc, I'd quite like to not take my medication, but alas, I do and I'll have you know I'm really quite anal about it. I've missed about a total of maybe 5 doses the entire time I've been put on these soul absorbing capsules and considering I have to take them 3 times a day and you've put me on them for three months already I reckon that's pretty good going. You asshole.
My mum backed me in my corner and we pushed him back into his. He said in that case then they've 'neglected' me and they should have been more attentive and kept a closer eye. Yeah. Too right. I've been telling you about my changes and all I ever hear is 'oh, okay well we'll see when the results come back'. He said although I felt horrible for the first couple of months on Metyrapone, they were doing the job and that was a good thing. He then said he's going to have to increase my medication and essentially put me back to sleep. I feel as if I'm a jack-in-a-box...I've finally broken free and he wants to push me back down and shut the lid on me. What they normally do to someone already on my dosage is add on Ketoconazole but instead of going through all the faff of prescribing, sourcing and starting me on a new drug, they're just going to increase my Metyrapone to 750mg TDS. So bam, that was managing my cortisol over with, now just the small problem of my blood pressure. He said that when you go under they only ask you about two things: allergies and blood pressure. He said with cortisol levels, they can be lenient but when it comes to blood pressure, no systems are go if it's not controlled.
When I told him I was on 3.75mg of Ramipril he told me my GPs were pansies and with readings as high as mine I need a lot more pumped into me than that. He blasted my Ramipril up to 10mg and said I had to go back on Amlodipine again. I told him about my amlodipine induced wotsit ankles so he threw in Bendroflumethiazide too. Brilliant. That week I was on SEVENTEEN tablets a day. That is only because I wanted to use up my lower dose ramipril capsules before starting on the big boys, though. Pleased to say I'm down to thirteen now. pah.
But pumping a stronger cocktail of drugs into me hasn't made much difference to be honest. I'm still here! Ive had a few (inconvenient) waves of feeling shit but I'm still buzzing at 3am and still pissing throughout the night. The physical symptoms have also reared their ugly heads... my skin has erupted (although eat, sleep, breathing easter chocolate probably doesn't help), my hump has returned and as my mother so kindly pointed out, so has my moustache. Just get me to that operating table!
Wednesday, 30 March 2016
Wednesday, 17 February 2016
It's been a while...
So, I haven't written a post in a very long time, partly because what's been going on hasn't been particularly interesting, but mainly just because I'm a lazy piece of shit. So I guess I should catch you up now before it all piles on top of me and I forget more of what's been going on.
I've been on Metyrapone for about 8 weeks now and much to my luck, it's still giving me sucky side effects. About 15-20 minutes after taking it I get a sudden wave of light-headed and dizziness and, as one woman described in her experience, 'eyes roll around my head like a smack addict on a fix'... then I get an overwhelming urge to sleep away the day. I also started getting those kind of headaches that you get if you're stuck in a stuffy car with a really bad driver, constantly. I'm usually not a headachy person at all, so developing a perma-ache really ain't my cup of tea. Oh and I've also started to get painful migraines that actually physically hurt and wake me up in the middle of the night more frequently. (recent life really has been joyus).
So my follow up Metyrapone day curve test was originally meant to be on the 21st January, but my Mum called my CNS worried about my headaches, drowsiness and the rash around my neck and chest getting worse, so they brought it forward to the 7th so they could 'check me out' sooner rather than later. That day I walked in and as soon as I was seen I got told 'lie down, you look ill'. (Cheers). But at least this meant I was given a bed this time... swings and roundabouts. I can't really tell you much about the day because I was quite literally unconscious the entire time. When my arse touched that bed and the curtain was drawn, I was out like a light. I can't really recall the outcome of when Jackie (consultant) and Patsy (CNS) came to see me. We spoke for ages but didn't actually say much. All I can really remember was that Jackie was relieved that Metyrapone hadn't induced my rash and it was there before, and that we should wait on the results to see what's going on to find an explanation for my symptoms.
About 10 days later my mum gave my CNS another ring because the side effects were only really getting worse. She suggested starting me on Hydrocortisone (a cortisol replacement) because it seemed like the Metyrapone was doing too much of a good job and my symptoms suggest that now my cortisol levels were too low. So that was that, another couple pills to add to my daily cocktail pot. I kept my fingers crossed that it would pump some energy back into me so I could actually schedule something that lasts longer than 3 hours into my day, but alas, no luck. I haven't actually felt any different since starting. In fact, one day I had a migraine all throughout the day and when I finally got up at 5.30 (pm) I was beckoned back to bed with the same pounding headache by 10.
My next appointment was a CT scan of my adrenals, just to make sure I wasn't double whammy-ed with a tumour on my brain and my adrenal glands. Another quite fun experience, except when they pumped the contrast through my 'teeny weeny veins' (as he ever so kindly put it), it gave me a sensation that felt like I'd wet myself. I felt wholly inappropriate talking to him trying to remain normal whilst down below, I felt like I was sitting in piss. Anyway, results from that came back and although I have enlarged adrenals (which is to be expected as they're doing more work than the average), there were no growths or abnormalities... hooray!
Next up was another day curve... another six glorious hours of doing nothing. The day before, my nurse called me and asked me not to take my hydrocortisone but I thought 'eh?' Wasn't this day curve test to check they'd balanced my medications right and to see if my cortisol levels were now at the right level? Anyway, she said she'd talk to one of the doctors and call me back with an answer... her answer was that I could take it. Turns out I shouldn't have. About half way through the day when I was seen by Dr Chris he said they weren't trying to see if they'd balanced it out right, they were still testing the effectiveness of Metyrapone, so by me taking cortisol replacement I've basically made all the results dud. whoopsy. He said he'd try and interpret the results anyway, but booked me in for a repeat day curve test the following week. This time with no hydrocortisone.
So the next week rolls around, and this time I brought my mum with me. She's better at understanding all those medical terms and is slightly more on the ball to ask any relevant questions. My nurse told me the week before to write anything I wanted the doctor to explain to me down, so I didn't forget, so we arrived prepped with another long list...
this one is taken as if my head is sliced in half, down the middle of my face... the tumour is somewhere around the white squiggle on the gray bit by the top right of the black section behind my eyes
and in this one, taken as if my head is sliced the other way (face on one half, back of the head on the other) the tumour is where the cursor is... he said you can tell because that side is bigger than the other. I dunno, I still don't really know what I'm looking at, but it looks cool and my brain is juicier than I expected.
Anyway so at this appointment they continued to monitor my blood pressure and just my luck it was still too high, usually reading around high 150s over low 120s, they decided to increase my dosage of amlodipine to 10mg a day. This brought my BP back down to normal readings, which for me was a milestone... I'd never had that before! But since starting the higher dose I noticed my knees and ankles were getting swollen and itchy. Fab. Just what I need... headaches, drowsiness, nausea annnnd kankles to top it off! Being the shape of a tree trunk isn't my preference so I booked an appointment with the doctors to see what they could do. And then, when I was standing in the same position for about half an hour, I looked down and my feet were practically black and my legs had turned blue! When I started walking around the colour came back but it was weird looking down and seeing what resembled a dead body. Kinda gross, but kinda cool. Anyway, so I went to the docs and now I have to switch to Ramipril and go for a check up and blood test (to make sure it's not killing my kidneys) in two weeks.
Oh and they also said that the results of all my previous tests show that although the metyrapone is doing its job, my cortisol levels are still higher than average. The results from the test I did when I accidently took hydrocortisone showed my cortisol levels were in the thousands... So its likely that my dosage of metyrapone will increase... Im tired of feeling crap all the time from all this medication and really wish surgery would hurry up! But I have a meeting with a neurosurgical team on the 21st March which isn't too far away I guess and I think they'll set a (near future) date then. And I'm making a pie tomorrow, so I guess life still has its perks.
I've been on Metyrapone for about 8 weeks now and much to my luck, it's still giving me sucky side effects. About 15-20 minutes after taking it I get a sudden wave of light-headed and dizziness and, as one woman described in her experience, 'eyes roll around my head like a smack addict on a fix'... then I get an overwhelming urge to sleep away the day. I also started getting those kind of headaches that you get if you're stuck in a stuffy car with a really bad driver, constantly. I'm usually not a headachy person at all, so developing a perma-ache really ain't my cup of tea. Oh and I've also started to get painful migraines that actually physically hurt and wake me up in the middle of the night more frequently. (recent life really has been joyus).
So my follow up Metyrapone day curve test was originally meant to be on the 21st January, but my Mum called my CNS worried about my headaches, drowsiness and the rash around my neck and chest getting worse, so they brought it forward to the 7th so they could 'check me out' sooner rather than later. That day I walked in and as soon as I was seen I got told 'lie down, you look ill'. (Cheers). But at least this meant I was given a bed this time... swings and roundabouts. I can't really tell you much about the day because I was quite literally unconscious the entire time. When my arse touched that bed and the curtain was drawn, I was out like a light. I can't really recall the outcome of when Jackie (consultant) and Patsy (CNS) came to see me. We spoke for ages but didn't actually say much. All I can really remember was that Jackie was relieved that Metyrapone hadn't induced my rash and it was there before, and that we should wait on the results to see what's going on to find an explanation for my symptoms.
About 10 days later my mum gave my CNS another ring because the side effects were only really getting worse. She suggested starting me on Hydrocortisone (a cortisol replacement) because it seemed like the Metyrapone was doing too much of a good job and my symptoms suggest that now my cortisol levels were too low. So that was that, another couple pills to add to my daily cocktail pot. I kept my fingers crossed that it would pump some energy back into me so I could actually schedule something that lasts longer than 3 hours into my day, but alas, no luck. I haven't actually felt any different since starting. In fact, one day I had a migraine all throughout the day and when I finally got up at 5.30 (pm) I was beckoned back to bed with the same pounding headache by 10.
My next appointment was a CT scan of my adrenals, just to make sure I wasn't double whammy-ed with a tumour on my brain and my adrenal glands. Another quite fun experience, except when they pumped the contrast through my 'teeny weeny veins' (as he ever so kindly put it), it gave me a sensation that felt like I'd wet myself. I felt wholly inappropriate talking to him trying to remain normal whilst down below, I felt like I was sitting in piss. Anyway, results from that came back and although I have enlarged adrenals (which is to be expected as they're doing more work than the average), there were no growths or abnormalities... hooray!
Next up was another day curve... another six glorious hours of doing nothing. The day before, my nurse called me and asked me not to take my hydrocortisone but I thought 'eh?' Wasn't this day curve test to check they'd balanced my medications right and to see if my cortisol levels were now at the right level? Anyway, she said she'd talk to one of the doctors and call me back with an answer... her answer was that I could take it. Turns out I shouldn't have. About half way through the day when I was seen by Dr Chris he said they weren't trying to see if they'd balanced it out right, they were still testing the effectiveness of Metyrapone, so by me taking cortisol replacement I've basically made all the results dud. whoopsy. He said he'd try and interpret the results anyway, but booked me in for a repeat day curve test the following week. This time with no hydrocortisone.
So the next week rolls around, and this time I brought my mum with me. She's better at understanding all those medical terms and is slightly more on the ball to ask any relevant questions. My nurse told me the week before to write anything I wanted the doctor to explain to me down, so I didn't forget, so we arrived prepped with another long list...
- Have I already started part of the recovery by weaning me off the cortisol?
Apparently, no... they haven't put me on metyrapone to avoid the shock of lower cortisol levels, theyve put me on it to prep my skin tissue for the physical impact of surgery. Apparently if they were to operate now, when they cut away behind my nose, stitching me back up would be like 'putting stitches in butter', and they need me to be firmer in order for me to heal. - Am I going to have a catheter in my pee hole?!
No... praise the lord!!!!! My mum had read somewhere that they can usually use a catheter as a way of monitoring urinary output as the pituitary gland controls some kind of hormone that controls the bladder or something. Turns out i just have to piss in a bed pan. (woo) - Would I be under the care of neuro or endocrine?
Technically neuro, but under the endocrine department of neurology - How long will I need someone to be by my bedside answering to every beckoning call?
I should be discharged in day 4 or 5 and I should be able to do things for myself straight away really, so having someone permanently by my side to do everything for me isn't entirely necessary (dammit). I'll just be very weak, slow and drowsy.
and typically, I can't really remember many of the other questions. One of the first things I did ask though was to see my MRI and be formally introduced to the shitbag that's decided to set up shop inside my brain. I can't say I knew entirely what I was looking at but here are a couple photos from the scan:
Anyway so at this appointment they continued to monitor my blood pressure and just my luck it was still too high, usually reading around high 150s over low 120s, they decided to increase my dosage of amlodipine to 10mg a day. This brought my BP back down to normal readings, which for me was a milestone... I'd never had that before! But since starting the higher dose I noticed my knees and ankles were getting swollen and itchy. Fab. Just what I need... headaches, drowsiness, nausea annnnd kankles to top it off! Being the shape of a tree trunk isn't my preference so I booked an appointment with the doctors to see what they could do. And then, when I was standing in the same position for about half an hour, I looked down and my feet were practically black and my legs had turned blue! When I started walking around the colour came back but it was weird looking down and seeing what resembled a dead body. Kinda gross, but kinda cool. Anyway, so I went to the docs and now I have to switch to Ramipril and go for a check up and blood test (to make sure it's not killing my kidneys) in two weeks.
Oh and they also said that the results of all my previous tests show that although the metyrapone is doing its job, my cortisol levels are still higher than average. The results from the test I did when I accidently took hydrocortisone showed my cortisol levels were in the thousands... So its likely that my dosage of metyrapone will increase... Im tired of feeling crap all the time from all this medication and really wish surgery would hurry up! But I have a meeting with a neurosurgical team on the 21st March which isn't too far away I guess and I think they'll set a (near future) date then. And I'm making a pie tomorrow, so I guess life still has its perks.
Thursday, 24 December 2015
Cortisol Day Curve Test and Metyrapone
Shortly after writing my last lovely morbid blog post I received two letters from Kings. One was an appointment letter (actually arrived on time!) and one was CCing me into the correspondence between my hospital and my doctors about all the discussions they had in their MDT meeting. The appointment letter was just telling me what was actually gonna happen when I go to the PIU- Pretty basic, they put a cannula in my forearm and take my blood every two hours, for six hours to see the patterns of my Cortisol levels (people with Cushing's have different patterns). They also said it was a long test so advised me to 'bring some reading material' or alternatively I could 'watch some TV in the TV room'... great suggestions but I'll bring my laptop, steal your internet and watch Netflix instead, thanks. TV from the hours of 9am-3pm is wank... even at Christmas. And I don't really fancy having to talk to old people about current issues raised on Loose Women. But let's be honest, I'll probably be sleeping the entire time. I haven't seen those hours that side of the day for a while.....
Anyway, next letter was slightly more interesting. It was the notes from the endocrine MDT meeting summarising my 'case'. It began with my overall profile (symptoms and history etc., basically all that was discussed in the first appointment, nothing new), then had the table of results from my dexamethasone blood tests (not that I have the foggiest idea on what half of the hormones do or any idea on what the numbers mean), the measurements of cortisol in my piss (normal person is meant to be under 200 and mine was 2014!), the findings on my MRI (left sided 11mm macroadenoma(!), no pictures though :() and then was what they still need to do ahead of surgery (get my baseline ACTH, Cortisol Day Curve, start me on Metyrapone and CT my adrenals). Lovely. Now I actually know what's going on and I'm finally in the loop!! Even though hearing that despite only 10% of pituitary tumours are over 5mm and mine is 11mm was a bit of a shock, the size of it means that an IPSS test isn't necessary (at least I think/hope not) so now my mind's at ease because I don't have to worry about gross or invasive testing. I've just got to have another scan and have my blood taken a few times. Phew.
So anyway, Monday rolls around. Getting up early really isn't my thing so when I arrived on time (as they had warned me to), and I had to wait an hour and twenty minutes to be seen, I was pissed off. It was an hour and a half I could have spent sleeping, but no I had to listen to an old woman texting reeeeallly slowly on an old school phone with the button sounds turned on. But it was nurse Kemi again and I like her, she's cute. Again, there's not really much to say about what this investigation involves. She put a cannula in my arm and drew my blood 3 times and then said it needed to be taken again in 2 hours, then 2 hours after that, then 2 hours after that and then I could go home. I was allowed to do whatever the hell I wanted in the time being (within reason), providing I was in the PIU at those times. ... but there is fuck all to do in Denmark Hill so looks like I'll just set up camp here. At first she gave me a bed, in which I thought 'fantastic! 6 hours more of sleep' but swiftly after I'd just taken my shoes off another nurse came in with a clipboard and claimed the bed. I was relegated to a chair. Cheers. To be fair it was a pretty slick chair though, it reclined and everything. Although it was on wheels and when I clicked the recliner button and the front flipped out it was so powerful that I slid across the floor and into the curtain. And to make matters worse, I was on my own so I didn't even have anyone to laugh about it with. I just had to get up and wheel it back to the wall while everyone else watched.
Yeah, so the day consisted of me watching Breaking Bad in a recliner chair. Pretty boring. There was a woman next to me though, in for her pre-op assessment and she had Cushing's too. Seeing as the only form of privacy was a thin blue curtain between each patient I was able to hear all the things she was discussing with her doctor. She was quite a bit older than me, maybe in her 50s and the list of illnesses and problems she's had throughout her life associated with Cushing's was scary! She was telling the doctors how she suffers so badly with Osteoporosis to the point where she currently has a fractured spine, has had to have hip replacement surgery and had to leave her job because she is no longer able to do even the smallest thing, like lift a box, without the risk of her bones snapping. She's also developed type 2 diabetes, has to be on medication for depression and has a whole load of heart conditions. She's been diagnosed and had to deal with all of these things throughout her life but only now has she discovered that they're actually all a result of this one thing. It was quite sad to know that it had gone so long undetected that the excess cortisol has damaged her mind, bones and organs to the point of no return. I hope and pray I'm lucky and young enough to ping back from any damage that my 11mm guest has slowly been doing on the sly.
Anyway, so my six hours was up and I was sent on my merry way with 336 capsules of Metyrapone to last me the next couple months. They said I should start meds tomorrow and they'll call me to arrange a date for another Cortisol Day Curve within the next month to check the dose they've prescribed is having the right effects on me, but that's all. I have to take 2 capsules 3 times a day, 6-8 hours apart, with food. How inconvenient and annoying. I hate eating in the morning but if I eat and take my first dose too late, it means I have to wait and eat and take my last dose even later at night... Kemi suggested 8am, 2pm, 8pm.
...I suggested 10am, 4pm, 10pm. But come on! Who eats at any of those times? I've only been on it for three days and I'm already struggling. Because I can't bring myself to eat properly in the mornings, when I've been having food for the first dose it's only small. But that then means that I can't wait six hours to have my lunch, so I have lunch and then have to have a snack when it gets to dosage time. But when it's snack time I'm still full from lunch so I have to argue and force myself to eat like I'm some sort of child. And dinner...... it's the same bloody situation! If I'm not eating dinner with friends, I'm eating dinner with my family. They don't have to revolve when they eat around the schedule of my meds! So I tend to have dinner before my last dosage time and have to eat another snack when the six hours is up. Looks like I'm gonna have to be snack queen and pile on a couple more thousand pounds ahead of surgery. ...That or vomit when I take my pills... maybe I'll see how bad it really is taking them without food and decide. They have been making me feel super light headed and dizzy for about half an hour when I initially take them, like my mind is 5 seconds behind my body, and then just averagely light headed and dizzy for about an hour after that though, so that mixed with vomit doesn't sound like something I'm raring to dip my feet into.... Haven't got the shits though! WIN!
So anyway, Monday rolls around. Getting up early really isn't my thing so when I arrived on time (as they had warned me to), and I had to wait an hour and twenty minutes to be seen, I was pissed off. It was an hour and a half I could have spent sleeping, but no I had to listen to an old woman texting reeeeallly slowly on an old school phone with the button sounds turned on. But it was nurse Kemi again and I like her, she's cute. Again, there's not really much to say about what this investigation involves. She put a cannula in my arm and drew my blood 3 times and then said it needed to be taken again in 2 hours, then 2 hours after that, then 2 hours after that and then I could go home. I was allowed to do whatever the hell I wanted in the time being (within reason), providing I was in the PIU at those times. ... but there is fuck all to do in Denmark Hill so looks like I'll just set up camp here. At first she gave me a bed, in which I thought 'fantastic! 6 hours more of sleep' but swiftly after I'd just taken my shoes off another nurse came in with a clipboard and claimed the bed. I was relegated to a chair. Cheers. To be fair it was a pretty slick chair though, it reclined and everything. Although it was on wheels and when I clicked the recliner button and the front flipped out it was so powerful that I slid across the floor and into the curtain. And to make matters worse, I was on my own so I didn't even have anyone to laugh about it with. I just had to get up and wheel it back to the wall while everyone else watched.
Yeah, so the day consisted of me watching Breaking Bad in a recliner chair. Pretty boring. There was a woman next to me though, in for her pre-op assessment and she had Cushing's too. Seeing as the only form of privacy was a thin blue curtain between each patient I was able to hear all the things she was discussing with her doctor. She was quite a bit older than me, maybe in her 50s and the list of illnesses and problems she's had throughout her life associated with Cushing's was scary! She was telling the doctors how she suffers so badly with Osteoporosis to the point where she currently has a fractured spine, has had to have hip replacement surgery and had to leave her job because she is no longer able to do even the smallest thing, like lift a box, without the risk of her bones snapping. She's also developed type 2 diabetes, has to be on medication for depression and has a whole load of heart conditions. She's been diagnosed and had to deal with all of these things throughout her life but only now has she discovered that they're actually all a result of this one thing. It was quite sad to know that it had gone so long undetected that the excess cortisol has damaged her mind, bones and organs to the point of no return. I hope and pray I'm lucky and young enough to ping back from any damage that my 11mm guest has slowly been doing on the sly.
Anyway, so my six hours was up and I was sent on my merry way with 336 capsules of Metyrapone to last me the next couple months. They said I should start meds tomorrow and they'll call me to arrange a date for another Cortisol Day Curve within the next month to check the dose they've prescribed is having the right effects on me, but that's all. I have to take 2 capsules 3 times a day, 6-8 hours apart, with food. How inconvenient and annoying. I hate eating in the morning but if I eat and take my first dose too late, it means I have to wait and eat and take my last dose even later at night... Kemi suggested 8am, 2pm, 8pm.
...I suggested 10am, 4pm, 10pm. But come on! Who eats at any of those times? I've only been on it for three days and I'm already struggling. Because I can't bring myself to eat properly in the mornings, when I've been having food for the first dose it's only small. But that then means that I can't wait six hours to have my lunch, so I have lunch and then have to have a snack when it gets to dosage time. But when it's snack time I'm still full from lunch so I have to argue and force myself to eat like I'm some sort of child. And dinner...... it's the same bloody situation! If I'm not eating dinner with friends, I'm eating dinner with my family. They don't have to revolve when they eat around the schedule of my meds! So I tend to have dinner before my last dosage time and have to eat another snack when the six hours is up. Looks like I'm gonna have to be snack queen and pile on a couple more thousand pounds ahead of surgery. ...That or vomit when I take my pills... maybe I'll see how bad it really is taking them without food and decide. They have been making me feel super light headed and dizzy for about half an hour when I initially take them, like my mind is 5 seconds behind my body, and then just averagely light headed and dizzy for about an hour after that though, so that mixed with vomit doesn't sound like something I'm raring to dip my feet into.... Haven't got the shits though! WIN!
Friday, 18 December 2015
Down Day
Everyone has their down days and today is one of mine. I think I've spent far too long thinking. I woke up feeling lifeless and achey and when I got undressed to get in the shower I noticed just how bad this skin rash has gotten. Its spread all across my chest and is spreading down to my abdomen and up onto my face. No amount of cream is gonna make it go away cause its not caused by an infection or bacteria, its just another way of my body telling me somethings not right with my hormones....(Cheers for the heads up but toootally unnecessary... I reckon I already know now). It was something I wasn't really fussed about because I thought surgery would be within the next few weeks so Id became detached to my body knowing that it would change after my op, but now I know I've got to live in it, with no changes for another three months makes me severely unenthusiastic about life. I also spent about half an hour in the shower running my fingers through my hair and watching it all fall out. The fact the actual hairs on my head are thick kind of disguises the fact im balding, but after collecting all the hair I'd stuck to the bathroom wall and holding a good dense ball that filled the entire palm of my hand made me feel like a sick person which made me feel sad. Am I gonna have any hair left by the time I go in for my op?
Anyway, I should probably just try to look on the bright side of things and know that eventually these things will be a thing of the past but at the moment if they offered me surgery tomorrow, even though it would ruin all my plans and guarantee me to have a shit christmas I'd take it up in a heartbeat!
Thursday, 17 December 2015
Alas, No Surgery Before Christmas...
After waiting over a week and hearing diddly squat about the results of my MRI or next steps I need to take it was made clear surgery won't be happening before Christmas (seeing as they wouldn't book me in for Christmas week just incase there are any complications and I'd like to think they'd give me a bit more notice than a couple of days to prepare myself before scooting around in my brain). Being kept in the loop and being told this by one of the team would be nice though, instead of me having to calculate and try and figure it out myself.
I gave the good old secretary a call to find out about my MRI and try and get a vague picture of what was upcoming before Christmas. She said she didn't know anything, but the usual protocol is for Dr. Gilbert to write to me when she does. Oh come on! We're in the 21st century now, why is it so hard to get hold of someone who actually knows what they're talking about? All I want is a five minute conversation so I actually know what's going on! But seeing as I only actually received my MRI appointment letter 5 days after I actually had it, it looks like I'll be enlightened on what's actually going on in roughly 2060. The last time I managed to speak to Dr. Gilbert, she said she wanted to put me on medication to get my cortisol levels down if surgery has to be after Christmas, so surely they need to get in contact some time soon in order to fuel me up with my appropriate Christmas drugs...
Then, yesterday, while I was in the blissfully in the shower, I got a voicemail asking me to confirm that I can make an appointment at the PIU for a Day Cortisol Test next Monday (whatever the hell that is?). I called them back to confirm that I could attend it but wanted to actually know what it was or what it was for. The phone got flung around person to person and I finally ended up on the line to a nurse who had a vague idea of the procedure. Still, she wasn't too clear though, it was obvious she was just reading off scraggy notes and trying to piece it together. All I gathered from her confused talk was that I had to be there at 9.15am, it was testing my blood, it would take at least six hours and something about figuring out dosage for a drug they want to put me on called Metyrapone. Fantastic. Still don't even really know what I'll be doing but at least she reassured me it was non-invasive... I guess that's a positive? I should be able to go to work the next day and rake in a final bit of dollar before I become a doubling, bedridden, lifeless recovering sack. But what the hell am I supposed to do for six hours?!
And then today, Mum forwarded an email she'd got from Dr. Gilbert (she was also pestering to find out about timings or results as she has to know when to take time off work and make other arrangements so she's able to tend to her princess (aka me)). The email basically said that the results of my bloods and MRI are 'in keeping with pituitary Cushing's' (I'm guessing they identified a tumour on the scans (which I wanna see!)) and they need to be put on metyrapone as prep ahead of surgery. And then at the end she signed off by saying 'it is envisaged that the course of treatment to optimise the cortisol levels ahead of surgery will provisionally be 12 weeks.' as if it was nothing.
...TWELVE WEEKS?! THREE MONTHS?! At first, I was told the whole process from diagnosis to treatment would be less than two months and now you're telling me the prep for surgery alone is gonna take another three months? Not gonna lie... I'm slightly pissed off. Not only do I have to be anxious about this buggar growing inside my head the entire time but I have to be on medication for three months too.
I don't like taking meds. Before this whole saga, I rarely even took Ibuprofen. I once took Paramol and it knocked me out for six hours so it's always last resort to dabble in the pharmaceutical realm for me. When I took Dexamethasone for my suppression tests, my insides bubbled for a week and finishing a snack, let alone a meal without an 'interruption' was impossible. Even taking common Amlodipine for my blood pressure has given me an abundance of shitty side effects. Ugly rashes all over my chest and neck that external creams fail to make a difference to (my bastard GP owes me £8.60.), thinning and more sensitive skin, furriness, escalated forgetfulness, decreased cognitive abilities and generally feeling weaker and tired for most of the day.
This metyrapone shit they want to put me on doesn't sound the greatest either. It's highly likely to make me feel nauseas, dizzy, give me the shits and make me even hairier. I cannot wait for the next three months. Joking. I really can. -_-
I gave the good old secretary a call to find out about my MRI and try and get a vague picture of what was upcoming before Christmas. She said she didn't know anything, but the usual protocol is for Dr. Gilbert to write to me when she does. Oh come on! We're in the 21st century now, why is it so hard to get hold of someone who actually knows what they're talking about? All I want is a five minute conversation so I actually know what's going on! But seeing as I only actually received my MRI appointment letter 5 days after I actually had it, it looks like I'll be enlightened on what's actually going on in roughly 2060. The last time I managed to speak to Dr. Gilbert, she said she wanted to put me on medication to get my cortisol levels down if surgery has to be after Christmas, so surely they need to get in contact some time soon in order to fuel me up with my appropriate Christmas drugs...
Then, yesterday, while I was in the blissfully in the shower, I got a voicemail asking me to confirm that I can make an appointment at the PIU for a Day Cortisol Test next Monday (whatever the hell that is?). I called them back to confirm that I could attend it but wanted to actually know what it was or what it was for. The phone got flung around person to person and I finally ended up on the line to a nurse who had a vague idea of the procedure. Still, she wasn't too clear though, it was obvious she was just reading off scraggy notes and trying to piece it together. All I gathered from her confused talk was that I had to be there at 9.15am, it was testing my blood, it would take at least six hours and something about figuring out dosage for a drug they want to put me on called Metyrapone. Fantastic. Still don't even really know what I'll be doing but at least she reassured me it was non-invasive... I guess that's a positive? I should be able to go to work the next day and rake in a final bit of dollar before I become a doubling, bedridden, lifeless recovering sack. But what the hell am I supposed to do for six hours?!
And then today, Mum forwarded an email she'd got from Dr. Gilbert (she was also pestering to find out about timings or results as she has to know when to take time off work and make other arrangements so she's able to tend to her princess (aka me)). The email basically said that the results of my bloods and MRI are 'in keeping with pituitary Cushing's' (I'm guessing they identified a tumour on the scans (which I wanna see!)) and they need to be put on metyrapone as prep ahead of surgery. And then at the end she signed off by saying 'it is envisaged that the course of treatment to optimise the cortisol levels ahead of surgery will provisionally be 12 weeks.' as if it was nothing.
...TWELVE WEEKS?! THREE MONTHS?! At first, I was told the whole process from diagnosis to treatment would be less than two months and now you're telling me the prep for surgery alone is gonna take another three months? Not gonna lie... I'm slightly pissed off. Not only do I have to be anxious about this buggar growing inside my head the entire time but I have to be on medication for three months too.
I don't like taking meds. Before this whole saga, I rarely even took Ibuprofen. I once took Paramol and it knocked me out for six hours so it's always last resort to dabble in the pharmaceutical realm for me. When I took Dexamethasone for my suppression tests, my insides bubbled for a week and finishing a snack, let alone a meal without an 'interruption' was impossible. Even taking common Amlodipine for my blood pressure has given me an abundance of shitty side effects. Ugly rashes all over my chest and neck that external creams fail to make a difference to (my bastard GP owes me £8.60.), thinning and more sensitive skin, furriness, escalated forgetfulness, decreased cognitive abilities and generally feeling weaker and tired for most of the day.
This metyrapone shit they want to put me on doesn't sound the greatest either. It's highly likely to make me feel nauseas, dizzy, give me the shits and make me even hairier. I cannot wait for the next three months. Joking. I really can. -_-
Saturday, 12 December 2015
Monday's MRI and Final Goodbyes
Before my MRI I got a lot of questions asking me how I felt about it... I wasn't really sure what to answer. I wasn't really that fussed. I'm not claustrophobic or anything so I didn't really have any fear for it. Despite there being a RTA ( :( ) on the way there which meant we were 6 minutes late instead of 15 minutes early everything went quickly and smoothly.
I went in, was greeted by a friendly blond lady and given a sheet to fill out. First half asking about about metals and stuff (piercings, past experiences with metals etc.) and second half about medical background. Didn't take long seeing as I took all my jewlery off earlier and before this, the only time I've had to be in hospital concerning myself was when I was six and I picked my nose at after-school club so it started bleeding and it didnt stop for six hours. Even then it stopped in the a&e waiting room so I wasn't even seen. Actually. I lie. I also had to go to a&e when I was nine and got dared to put my hand in burning fire embers at brownie camp and I did... Peer pressure aye. But even then, because it was in the middle of nowhere, I got treated ( by treated i mean given some cream and a shitty fabric sling) in a building smaller than my doctors surgery. But anyway, I digress, none of this is relevant to getting an MRI. The answers on my form didnt flag up any concerns so I was good to go. I was led into a chilly room and asked to lay on the infamous MRI scanning bed with my head in a bowl typed thing. The woman then put a tiny needle in my left arm so she could pump in the contrast for the scan (You cant feel it going through you). Then she put ear plugs in my ears and padded out the rest of my head bowl with foam like padding. It was like wearing a big cushiony helmet but without your face being covered. Then she flipped a face cage thing over my head (but it was a relatively big cage so i had a good half a ruler space above me) and it had a mirror on it angled so i could see them in the background. I didnt feel claustrophobic in the slightest, it actually felt quite roomy. She then gave me a pump thing to hold in my right hand that I could squeeze incase I felt panicked and wanted it to stop and then put a blanket over me cause it was freakin freezing! Once i gave her the A OK she slid the bed along into the big circle machine thing and the scan began. I felt no way about it... My head was nice and padded so the noise wasnt even loud and being from south london, the murmurs and noises were quite comforting really. I could of had a snooze in there to tell you the truth. But there wasnt enough time for that. It was all over an done with very quickly. The parking meter in the car park told us we were in and out within 46 minutes. Lucky that, seeing as hospital car park prices are (immorally) extortionate! but let's not go into that.
I felt a little dizzy when I got out but not too badly, and it went after 5 minutes anyway. Time to rush to the station and get back up to manchester! I arrived with plenty of time and actually ended up waiting around for about half an hour before my train. Suited me... Enough time for a leisurely euston station Itsu :). My train was 25 minutes late (but five minutes too early for a half-refund, the bastards.) which meant I definitley didnt have enough time to drop my shit back at the house before heading to the party. I requested an uber as we pulled in and when i rushed down to the taxi rank it was already there waiting for me. I turned up at the bar looking like some kind of Lily Allen twat wearing a dress and trainers, lugging a big suitcase and an adidas rucksake stuffed like a year 7 school child. But at least I made it on time. I changed my shoes and proceeded to have a good night (the next day wasn't so good, though).
The next few days were lovely. Whilst also having to do rubbish things like getting my official interruption forms signed off and handed in and packing up my room, i was able to spend time basking in the company of my uni friends. Christmas meals, christmas markets, trashy tv... All that good stuff I love.
So thats been my week and the end of my time in manchester for this year. After what i can only describe as an 'appropriate' final send off experience of the magic bus, sitting sandwiched between the local gurny homeless woman with the ripped pleather coat and coarse hair and a giant drunk man singing songs to his equally as drunk friend standing on the stairs blocking anyone wanting to go past, I'm heading home for Christmas.
Friday, 4 December 2015
Dexamethasone Results and Party-Pooping MRI Mares
Seems like plans are a thing of the past. I can't make any without something popping up and ruining them! If you know me you'll know how anal and organised I have to be... I don't leave the house without my diary, notebook and a pen in my bag and I've made an excel spreadsheet mapping out my finances for the whole of uni (fail to prepare, prepare to fail!). So having to wait on things and not knowing what's going on really puts me on edge.
When I handed in my 24 hours of wee at the PIU (Planned Investigations Unit) I was told that although my blood results for the dexamethasone suppression test had 'probably come in', they didn't wanna give me them yet and they'd want to tell me the results and the next step of investigations altogether. Then, I was told that piss analysis usually takes two weeks to get results back from, so I assumed I had a little slot of time to get my shit together. Packing up my room in Manchester, organising for someone to find the time to drive it all back down and maybe squeezing in a little party, seeing as I'll be a little worse for wear and most probably not in the state to be enjoying any kind of boogie in the next upcoming months.
I went ahead and planned a nice little farewell shindig (even made a facebook event where whilst trying to avoid the morbid 'tumour' word, I said I had a 'friend' and people thought I was pregnant), booked a train ticket for a few days earlier so I could spend the weekend with my friends and sort out my room leisurely, bought tickets to my friends drama showcase, and spoke with my dad about driving up in the week. Great, fine, all sorted. Well no... Turns out the forces are determined to shit on any ideas I have.
I've needed to get a letter of supporting evidence to grant me time off uni, so nosey Wends (mum) has been emailing my consultant and her secretary. She was finally sent the letter but instead of just saying 'thank you' and leaving it at that, she proceeded to prod around and ask about more tests and dates etc. (even though we got told it'd be two weeks before we should expect to hear anything) ...Lucky that she did though because she was told I had an MRI booked in for next Monday at 4.50pm.
Brilliant. The day of my Manchester shindig! The ONE evening that I had solid plans for. Hired a room with staff and everything... I can't cancel!! I have put effort into guilt tripping people into clicking attending!! Altering plans sends me into panic mode!! Surely they should have contacted me earlier and told me about an appointment I'm supposed to attend? A phone call? A letter? A messenger boy? Anything?
I call up my consultant's secretary (can't get hold of prestigious people directly) and explain to her that the appointment time is literally the only time I can't do and she robotically tells me that I'll have to contact the MRI department to reschedule if I can't attend. I call them. They say the next date is the 5th January but I'll have to be quick to secure it cause appointments fill up quickly... For goodness sake!!! The MRI department is obviously really busy and if my consultant had the power to book me in for as early as next Monday I didn't want to piss on her power and reschedule it for a whole month later just because I don't want to let people down and want to have a party. So I call up her secretary for some more advice... I explained to her that Dr. Gilbert said in our previous appointment I was urgent and asked her if 'urgent' meant that a month wait was too long (considering she said she wanted me to have surgery before Christmas in the back of my mind I already kinda knew the answer). She said she'd try and talk to her but her advice was that nothing is guaranteed and I should really just try my hardest to attend the appointment I've been given.
Don't know what happened in this subsequent conversation between them but about 15 minutes later I got a phone call from my consultant, the golden woman herself, the woman behind fixing me, the one with all the knowledge and power! Finally! Firstly, she explained to me that my dexamethasone test results had come back and my bloods showed that the low dose had no effect (confirming a tumour) and the high dose showed levels of suppression (suggesting that the tumour is in/on the pituitary gland), so she's booked me an MRI of the brain. Then she said that she'd been informed I can't do the appointment time.... I begged her any other time except for monday evening. Monday morning, fine. Tuesday evening, fine. Tomorrow, fine. Now, fine!! ANY time that wasn't Monday evening :(. She apologised and said that I should have really been able to make arrangements and plans because yes, my 'pee is still cooking in the lab' and they wouldn't usually arrange for anything until the results for both were back, but the blood results were enough for her to know the next step so she tried to be as efficient as possible. This inconvenience is nobody's fault really. But anyway, she said she'll get on it, and get all the other endocrinology secretaries on it too. I came to terms that I probably wouldn't be able to get on my train on Friday and spend the weekend basking in friend's company because they'll either find me a cancellation or slot within the day/ next day or I have to just attend the original appointment and head up after.
Anyway so that was the task ahead- pestering the MRI department until they're sick to their bones of us. Only problem was that I didn't play much of a part in the team because I could never ever seem to get through to them. Didn't manage even once... and I tried consistently all day! Maybe the number I was using just called an old empty room. After my unsuccessful attempts, I called up Dr. Gilbert's secretary to see if she'd had any luck and she said she'd been on the phone to them ever since my consultant had asked... but there are no appointments or cancellations coming up. I could hear that one of the other endocrine secretaries were actually on the line to them when I called (being told no again), so you can imagine how important I felt that they weren't lying to keep me sweet and were actually doing all of this for me. She said that she'd never seen my consultant so eager to find something that suits me so she was really trying her hardest (she said her and the team had been telling them porkies like that I'm in hospital monday evening etc. but they were still having no luck). At the same time of feeling chuffed that I was so important to her I felt so guilty. I am being a spoilt brat making them do all this work just so it's convenient for me. So I accepted that I should go to the Monday appointment. I asked about rough time scales to see if the party had to definitely be cancelled (cause I'd need to call up and get Revs to cancel their staff and prep, and then explain to all the people I invited that they're gonna have to find alternative monday motives) or whether I could potentially wiggle some things around so it could still go ahead.
We put our logistical heads on and called up the MRI department again to give us an indication of how long everything will take. Looks like I'm gonna have to delay the party by an hour, rock up fresh, straight from the station, and have to pay for an expensive train ticket but it's a mission I'm ready for. Let's hope that everything runs smoothly and on time and the NHS, traffic, virgin trains are on my side.
Oh, I also asked my consultant whether surgery before Christmas was still likely and she said there is a possibility but to keep an 'open mind'. She said she'll probably put me on meds to get my cortisol levels down if surgery has to be postponed but seemed to hint that it will happen just after christmas (which is ideal for me :)) But I really need to stop thinking of ideal situations and then convincing myself I can have everything my way... the forces do not tend to work in my favour.
When I handed in my 24 hours of wee at the PIU (Planned Investigations Unit) I was told that although my blood results for the dexamethasone suppression test had 'probably come in', they didn't wanna give me them yet and they'd want to tell me the results and the next step of investigations altogether. Then, I was told that piss analysis usually takes two weeks to get results back from, so I assumed I had a little slot of time to get my shit together. Packing up my room in Manchester, organising for someone to find the time to drive it all back down and maybe squeezing in a little party, seeing as I'll be a little worse for wear and most probably not in the state to be enjoying any kind of boogie in the next upcoming months.
I went ahead and planned a nice little farewell shindig (even made a facebook event where whilst trying to avoid the morbid 'tumour' word, I said I had a 'friend' and people thought I was pregnant), booked a train ticket for a few days earlier so I could spend the weekend with my friends and sort out my room leisurely, bought tickets to my friends drama showcase, and spoke with my dad about driving up in the week. Great, fine, all sorted. Well no... Turns out the forces are determined to shit on any ideas I have.
I've needed to get a letter of supporting evidence to grant me time off uni, so nosey Wends (mum) has been emailing my consultant and her secretary. She was finally sent the letter but instead of just saying 'thank you' and leaving it at that, she proceeded to prod around and ask about more tests and dates etc. (even though we got told it'd be two weeks before we should expect to hear anything) ...Lucky that she did though because she was told I had an MRI booked in for next Monday at 4.50pm.
Brilliant. The day of my Manchester shindig! The ONE evening that I had solid plans for. Hired a room with staff and everything... I can't cancel!! I have put effort into guilt tripping people into clicking attending!! Altering plans sends me into panic mode!! Surely they should have contacted me earlier and told me about an appointment I'm supposed to attend? A phone call? A letter? A messenger boy? Anything?
I call up my consultant's secretary (can't get hold of prestigious people directly) and explain to her that the appointment time is literally the only time I can't do and she robotically tells me that I'll have to contact the MRI department to reschedule if I can't attend. I call them. They say the next date is the 5th January but I'll have to be quick to secure it cause appointments fill up quickly... For goodness sake!!! The MRI department is obviously really busy and if my consultant had the power to book me in for as early as next Monday I didn't want to piss on her power and reschedule it for a whole month later just because I don't want to let people down and want to have a party. So I call up her secretary for some more advice... I explained to her that Dr. Gilbert said in our previous appointment I was urgent and asked her if 'urgent' meant that a month wait was too long (considering she said she wanted me to have surgery before Christmas in the back of my mind I already kinda knew the answer). She said she'd try and talk to her but her advice was that nothing is guaranteed and I should really just try my hardest to attend the appointment I've been given.
Don't know what happened in this subsequent conversation between them but about 15 minutes later I got a phone call from my consultant, the golden woman herself, the woman behind fixing me, the one with all the knowledge and power! Finally! Firstly, she explained to me that my dexamethasone test results had come back and my bloods showed that the low dose had no effect (confirming a tumour) and the high dose showed levels of suppression (suggesting that the tumour is in/on the pituitary gland), so she's booked me an MRI of the brain. Then she said that she'd been informed I can't do the appointment time.... I begged her any other time except for monday evening. Monday morning, fine. Tuesday evening, fine. Tomorrow, fine. Now, fine!! ANY time that wasn't Monday evening :(. She apologised and said that I should have really been able to make arrangements and plans because yes, my 'pee is still cooking in the lab' and they wouldn't usually arrange for anything until the results for both were back, but the blood results were enough for her to know the next step so she tried to be as efficient as possible. This inconvenience is nobody's fault really. But anyway, she said she'll get on it, and get all the other endocrinology secretaries on it too. I came to terms that I probably wouldn't be able to get on my train on Friday and spend the weekend basking in friend's company because they'll either find me a cancellation or slot within the day/ next day or I have to just attend the original appointment and head up after.
Anyway so that was the task ahead- pestering the MRI department until they're sick to their bones of us. Only problem was that I didn't play much of a part in the team because I could never ever seem to get through to them. Didn't manage even once... and I tried consistently all day! Maybe the number I was using just called an old empty room. After my unsuccessful attempts, I called up Dr. Gilbert's secretary to see if she'd had any luck and she said she'd been on the phone to them ever since my consultant had asked... but there are no appointments or cancellations coming up. I could hear that one of the other endocrine secretaries were actually on the line to them when I called (being told no again), so you can imagine how important I felt that they weren't lying to keep me sweet and were actually doing all of this for me. She said that she'd never seen my consultant so eager to find something that suits me so she was really trying her hardest (she said her and the team had been telling them porkies like that I'm in hospital monday evening etc. but they were still having no luck). At the same time of feeling chuffed that I was so important to her I felt so guilty. I am being a spoilt brat making them do all this work just so it's convenient for me. So I accepted that I should go to the Monday appointment. I asked about rough time scales to see if the party had to definitely be cancelled (cause I'd need to call up and get Revs to cancel their staff and prep, and then explain to all the people I invited that they're gonna have to find alternative monday motives) or whether I could potentially wiggle some things around so it could still go ahead.
We put our logistical heads on and called up the MRI department again to give us an indication of how long everything will take. Looks like I'm gonna have to delay the party by an hour, rock up fresh, straight from the station, and have to pay for an expensive train ticket but it's a mission I'm ready for. Let's hope that everything runs smoothly and on time and the NHS, traffic, virgin trains are on my side.
Oh, I also asked my consultant whether surgery before Christmas was still likely and she said there is a possibility but to keep an 'open mind'. She said she'll probably put me on meds to get my cortisol levels down if surgery has to be postponed but seemed to hint that it will happen just after christmas (which is ideal for me :)) But I really need to stop thinking of ideal situations and then convincing myself I can have everything my way... the forces do not tend to work in my favour.
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