All posts tagged jason

Vacation

Before I talk about our holiday, I need to explain something.

My husband, as much as I love him, does not do ‘impulsive’ terribly well. In fact, if you could describe him, one of they very first words you would use would be “not” and the second would be “impulsive”. For all of his excellent qualities, he’s not what you would call… a go-getter. The man still has clothes in his wardrobe from when he was 16. And a $5 note in his wallet from 18 months ago. He’s not a spender either.

So when Jason walked into my office on Saturday morning and said “hey, we should go for a drive to Busselton and stay for 2 nights”, he may as well have said “I have decided I want to be a lady and I am going to go on tour with the drag burlesque travelling circus, k?” and I would have reacted in much the same way. OK, not really, I probably would have expected the second.

But, he suggested it, and we booked into the Abbey Beach Resort based on their website. On the beach? Wireless? Check. Mini bar? Check. Restaurants with room service? Check… and check. $600 for 2 nights? Well, if it has wireless and is luxurious and has room service and a spa, well… let’s just indulge for a little while. We have a funeral on Monday afternoon we’d rather not think about.

Let’s not forget, we have 3 children – all of whom are not known for being the most flexible on the planet. But, they roll with it as much as they can and are happy to come along. Which is just as well because we blew our load on the hotel room and can’t afford a babysitter. So, it was basically a choice between a holiday or being locked under the stairs.

But of course, it doesn’t take long for the feral to kick in and I feel the urge to do both.

We arrive at a $300 a night “beachfront” resort that has glimpses of the beach (if you look past the 3 tennis courts and the giant tree), no mini bar, no room service in the apartments. The wireless costs $10 for 2 hours, but doesn’t reach our apartment. There is a queen-size bed, which we can live with but we are not used to, and our children are that lovely combination of excited and cranky at the same time. So, about every 3 minutes or so the jumping around and screaming will be interrupted by crying. And then the baby will go straight for the dishwasher buttons, then the knife drawer… whilst Jason and I try to figure out how the hell we are going to have dinner in our room because the kids are too tired for the restaurant.

So I hit up the lounge bar with my laptop, check emails and drink a glass of wine whilst I wait for our takeaway dinners. Which arrive on 4 plates and a tray. I have a laptop. It should also be noted that the restaurant is roughly equidistant to our room and the lobby… and they bring me the meals to the lobby. Which was nice of them, but I a) don’t understand why they can’t just bring it to the room and b) I now have to carry 4 plates and a tray back to our room. I smile through gritted teeth. Confused, perplexed gritted teeth. Oh and some bright spark decides to wolf whistle me on the way which, you know, made me feel sexy. Fuckhead.

By this point the baby is screaming and won’t go to sleep. Mina and Mr J are basically ready to hit up the drawer with the baby and have a knife fight with each other, and I am at my wit’s end because I have had to carry food across a $300 a night resort with no wifi and am grumbling to myself how holidays are so much fun with kids.

We finally get the kids to sleep around 11pm and I decide to have a spa. A spa that, as it turns out, has a drain 2/3 up the side to prevent you filling it above that point. Apparently they’ve had issues with it flooding because people overfill it. And then it occurs to me that bogans ruin EVERYTHING. Then I think “hey, I’ll have one of these “indulgent” hot chocolate sachets they’ve laid out. Mmmm, powdery, lumpy, snotty cocoa.

Did I mention that the baby threw a spatula off the balcony yet?

We then go to bed for a very uncomfortable night’s sleep and wake up with the day ahead of us. Tired, cranky children but we manage to have a nice breakfast, where the resort redeems itself just a little bit. We stop by the resort playground, where the baby manages a triple somersault onto his face and Mr J throws a tantrum or two. We hit up the beaches, go into Dunsborough, have  look around and take some photos. The kids start complaining of dying hunger (despite having huge plates of ginger pancakes an hour and a half earlier), so we go and get them McDonald’s. Yes, the Brennan children are all about our lovely local Southwest cuisine. Sigh.

And then we head down to the Busselton Jetty and go for a walk. Mina and Mr J go down onto the beach and I take some photos. And before we know it, both of my children are in the water, in full clothes, having the time of their lives. And for a brief moment, I want to tell them to get out of the water, but instead I just roll with it and take pictures. And laugh. And relax and realise that they are having fun and so am I, for the first time in a very long time, and we just enjoy the moment.

And boy, did I get some photos.

We return to the hotel room (where I have managed to purchase wireless access from the Caravan park next door), the kids are happy, soaking wet, getting out of their clothes. They jump in that crappy spa, Moo goes down for a nap (after again trying to eat a dishwasher detergent block), the kids start whingeing and Mina gets belligerent.

But I go and have a nap.

I wake up to Mina complaining she’s bored and Mr J playing Angry Birds on the iPad. Jason and I then see fit to tell our children what OUR childhood vacations consisted of: poo in a bucket, showering from a bucket (at which point I said to Jason that I hope it wasn’t the same bucket), hanging around a holiday village where the most thrilling thing was a trampoline… and 7 people in one caravan. And our daughter was complaining that the resort playground was boring. Hum. The older two again start bickering and we endure dinner in the Brasserie, where they make so much mess it is embarrassing, I am wearing dress boots with tracksuit pants (because I forgot a bag), and the baby smears $30 seafood risotto all over his face. And the carpet.

I look over at the young honeymooners at the table near the fire and realise that we are that family that either ruined their honeymoon, put them off having children for the next 10 years, or if their wedding was because of a baby in her tummy already, scare the crap out of them that they are just a few short years away from wearing tracksuit pants in a restaurant, drinking wine a little fast, and barking at her kids to sit down every 45 seconds.

Naturally, we have to leave the restaurant and take dessert back to our room because the kids are tired and bickering… and we finally get them to bed at 7:30, get to enjoy each other’s company for a little while, watch the first episode of Mad Men on DVD and then off to sleep I go because I drank my wine a little too fast during dinner.

And this morning we’ll be having breakfast, where they’ll find new and creative ways in which to embarrass us with food smears and tantrums, and then we head home for my Grandma’s funeral and one of the hardest days of my life. But, in amongst all of this, I realise that this was the best idea ever and even though holidays are exhausting, frustrating, and sometimes downright disappointing, it really is all about this moment. This $1200 moment.

Busselton 11a

Busselton 10

We are all stronger than we realise.

I always knew it was coming, and I frequently worried how I would cope when I got that call. My Grandma Chris is 79 years old in December… and as much as I hoped she’d live forever, I knew that every year she was getting just that little bit more frail and that it would come eventually.

But not like this.

My Grandma Chris is the single greatest influence in my life. She is the woman who raised me in my formative years; the woman who laughed with me when there wasn’t much to laugh about; the woman who filled my school lunch box with so much food I was able to feed half of my class. The woman who was there for me when my mother wasn’t. Who bought me my first sanitary pads, bought, washed & ironed my clothes, lent me money, screamed at me, sometimes quite mercilessly tortured me. She was always that one constant in my pretty tumultuous upbringing. She is the source of my world view – that person who keeps me humble and who I am more like than I care to admit.

So when I say “my Grandma is sick and I need to be at the hospital every day”, I get this look, like… “it’s not your Mum“. She’s just my Grandma and Grandmas are old and Grandmas die. But to me, this is not just a Grandma. She is my rock.

She is the toughest, most hard working and kindest person I have ever met. And honestly, while I knew in the back of my mind that she was getting old, and Jason and I had often had discussions about how I will deal with her death… now that I am facing it’s inevitability, I am a little bit mad at the world.

Grandma was born in Tipperary the week before Christmas in 1931. Her mother was unmarried. In Catholic Ireland. In the THIRTIES. She had 2 older brothers and a younger sister, Josephine, who died from a tonsillectomy when she was 7. Around the same time, her mother died in childbirth. Her father didn’t give a shit, so her uncle paid for her education at a convent in Cork.

My Grandma grew up in an Irish Catholic Convent during the Second World War. She worked her whole life. She worked 2 jobs, often cleaning offices. Never smoked, never drank. Never did anything but work and raise her 2 sons. She doesn’t talk much about her childhood – her memories are always positive and usually avoid nun-dodging.

She is the toughest, proudest, most stubborn old bird you could ever, ever meet. She can be ferocious – and it would be a disservice AND a lie to not acknowledge that I was often afraid of her. But holy fuck, is she funny. She has that Irish “oddness” about her, and noone can make me laugh like my Grandma. Even now as she lays in her hospital bed, we laugh.

But the thing that makes me angry is that despite all of the shit-on-a-plate that she has been handed in her life, her faith in God is unerring. God and Mary and Jesus and rosary beads and Catholic ritual are all so important to her, she is so genuinely hurt and afraid for my mortal soul. Because I don’t believe in God. I believe in God so much less now, if that’s possible, than I did a week ago.

Because now, this woman, who has led one of the most virtuous lives I can think of, is faced with either pancreatic cancer that has metastasised to her brain and lungs; a primary brain tumour that is inoperable and advanced; or a benign brain tumour that will still only give her a year tops. The woman who worked hard; never smoke, never drank, saved every single cent beyond what was necessary – lived a very humble and faithful life – is being rewarded with a painful and potentially undignified end. So FUCK God and his plan. But I don’t say that to her.

We have been waiting 8 days to get an MRI so we can find out the prognosis. The only thing that keeps her lucid is the dexamethasone, but she is on a downward spiral. How fast it’ll happen remains to be seen, but if she can she’ll come home with us. I feel that it is the least I can do. She looked after me when she didn’t have to. She never lets her guard down with anyone but me – and for that I feel privileged. I know that she is embarrassed but she lets me help her. And it is not an obligation, it’s an honour.

And I am dealing with it much better than I thought I could. I visit the hospital every day for a minimum of about 4 hours, I do her washing, make sure she’s eating, chat to her, fuss over her, remind her again that we have taken care of everything… and in a weird way I am enjoying the time I get alone with her. And now, facing her death is not so scary. Through trying to be positive for her, I end up holding it together.

On crashing to reality.

So, I think I have figured this whole thing out.

I have Cyclical Cushing’s – and with that, I cycle regularly between symptoms of Cushing’s and symptoms of it’s just-as-shit opposite Addison’s Disease. Now if you think having Cushing’s sucks balls… well… I’ve got news for you: I don’t believe there has ever been a scarier moment than this weekend when my cortisol levels crashed.

And you know, I have kinda been through some shit.

You know, 4 months ago I really just wanted to know why I was feeling crappy and gaining weight. I had a bunch of symptoms that on their own are fairly inocuous – reflux, ongoing weight gain, muscle weakness, burning face, crappy cycles, bad pregnancies… you know… silly things that age you faster but all in all, aren’t all that life threatening.

When I started to develop more severe symptoms like joint pain, fatigue and "roid rage" and had finally figured it out I was all "yay, I know what’s going on! I might actually start to look and feel like a non-mutant one day! I am cycling, I figured all out!" and I have to admit I was relieved, but not taking it too seriously because you know, my symptoms were annoying.

But, 4 months ago, I didn’t know what the fuck I was in for because now, my disease has started to progress to scary.

And it ain’t fun, or a relief, or anything anymore.

I have been feeling pretty ordinary for the last week, but for most of the last 3-4 months that I have been aware of Cyclical Cushing’s and have been noting the symptoms, I have been pretty much in a high cortisol, normal-cortisol-slightly-low-cortisol type of thing. It’s meant that the lows have been annoying, because I am tired and in pain and having trouble walking. But, it would pass after a day or so and I would be OK. I am still functioning.

But this weekend, there was a moment where I thought that I might not actually survive this.

For the first time I realised how serious this actually is… and how if I went to the hospital they wouldn’t even know what to do.

I knew the crash was coming, because Jason’s Worker’s Compensation claim finally settled after months of stress. I had planned for the stress to cause a crash at the end…. because that sort of thing has happened to me for most of my life. I laid fairly low on Friday, felt OK, so on Saturday we went to hang out with friends.

I was a little low, sore, tired, nothing I wasn’t used to. Bit flat but otherwise dealing… they swam, I swam, it was OK. Then, I got out of the pool and holy shit. All of a sudden I didn’t know where I was, couldn’t hold the knife to butter bread, had tremors and the most intense feeling that I was about to vomit and collapse at the same time. But, me being me and the control freak I am, just became fixated and upset about the fact that I couldn’t physically butter a bread roll.

My friends love me, but I am still trying my best to protect them from what’s going on. Mostly because if I let on, there is that tiny, tiny part of me that is afraid of being labelled dramatic, or whatever… and also that when I see them I like to pretend that I am not sick for a day. You know, like just pretend for one day a week that keeping my eyes open during a "low" is not a minute-by-minute struggle. And you know, noone wants to be the sick friend. They’re a drag.

So that moment passed relatively ok, some concerns of course, but you know… I just moved on in blissful denial, grazing on corn chips so I didn’t spew… and all was good. I had a couple of drinks and the word-slurring that went on in the evening led Jason to think that I had had more to drink than I actually had – all was good.

And on Sunday, holy shit. Got up, wasn’t feeling good, went to get some food, ate food. And what happened next I have absolutely no idea because somewhere along the way I had completely blacked out. I mean, I felt exhausted, but one minute I was sitting in my office, the next I woke up an hour later, in my bed, without clothes. I don’t remember anything. I don’t think I had a seizure this time, because I didn’t have that tongue-tingly thing, but I can’t be sure. I felt like death. I couldn’t move. I could only sleep.

And then I was fine again.

And then yesterday, I was fine, because I had a meeting to work up to, I had taken some stimulants to help me out, and then I got home, had dinner and then CRASH! for an hour again. Even on meds that are supposed to keep me awake.

I’m worried about the cycles becoming more extreme and more rapid. It’s now 13 days till my next endo appointment where I decide if I am going to Los Angeles or not.

I am trying to be as positive and whatnot as I can, but right now, I am just scared. Mostly because I know how bad Doctors have been to me in the past… and I have never been this sick before. So, now, I just want to go back to 6 months ago where I was a bit fat and a bit tired and had no idea what was going on.

I am a mess.

12:34am, the day of my endocrinologist appointment.

What a shitty day. I knew that I would be nervous in the lead-up to the appointment today, but holy shit… I didn’t expect ANYTHING like yesterday. There are no words to describe the uncontrollable and unmoving unrest & sheer RAGE I have felt. If I didn’t know why this was happening, I would be certain I was going crazy and would seriously, have taken myself off to Graylands voluntarily. Yes. That bad.

The good news, I guess, is that I am in a ‘high’ cycle, which means no pain for the last 3 days. I hope it’s high enough to catch in a blood test! The weirder news, just in case you thought you could read this blog and avoid the TMI stuff (jokes on you!)… my period that was 3 weeks late arrived today. The optimal time to test hormones & see what’s going on is cycle date 3, so I am a little bit "squee!" at the idea that things may just be obvious enough to get a diagnosis quickly.

I hope.

But of course, knowing what I do about the medical profession’s attitude about this, I am not going to hold my breath. Although the puffy face, the shoulder fat pads, the unbearable chin acne that shot up this last 2 days (all related to excess cortisol production), just MIGHT mean we can catch it. Jason is coming to my appointment to try and get through to the Doctor that I am really sick. Because I am terrible at getting that across myself. Hell, I can barely look anyone in the eye without wanting to rip their head off, so I can’t possibly think straight!

I have been thinking a lot about spiritual issues of late, wondering why on earth I keep being punished, despite being a good person. I don’t really have an answer for it other than if there IS a deity, that the only explanation for all of it is that I am somehow supposed to get treatment, so I can then go on and pursue research and cure everyone myself as a Doctor. I am not terribly religious, but I have to say that if things do go my way, I will repent like a motherfucker, because for the first time in about 15 months, underneath all the facial burning, the shadow-of-my-former-self and the telling my husband that he probably SHOULD kill himself because "hey, we have life insurance"… and hearing that like it’s coming out of someone else’s mouth … I feel some hope that things will work out.

Well, that and overwhelming dread, that I have not been able to get past, at the prospect of potentially not living to see my 35th or 40th birthday. And unbelievable paranoid, bipolar-like mood swings that go from complete and utter despair to tears, to screaming anger, all in the space of a few hours. I don’t recognise myself, but somehow I need to just know not to involve others and lock myself away.

Which, when you have hormones telling you to be a psycho bitch and seek out anyone to pick a fight… well… easier said than done.

But hey, at least the debilitating muscle & joint pain is gone, right?

My poor, poor family.

I was also reading up on some bits & pieces today in medical journals (what? you don’t do that?) and had a pretty scary revelation… about how lucky I am to have had 3 healthy-ish pregnancies. The worst outcome we had was Moo and his IUGR/Prematurity/Respiratory Distress… but it turns out… it could have been much, much worse if I had waited longer to have children. And I may not have been able to have them at all.

It turns out that the chances of Cushing’s patients conceiving, then maintaining pregnancy, are quite slim. But I have a theory about this one…. one that when the old genius-brain is restored and back to normal I will study and prove (among others)… and that is that because Cushing’s remains "dormant" for some time with cyclical or episodic patients and they get their diagnosis many years after being symptomatic… they are lumped into that PCOS/Hypertensive pregnancy/Atypical preeclampsia group and not generally followed up and not screened for Cushing’s. Like me.

In hindsight, my hypertensive pregnancies were probably in response to excess cortisol in my system… the blood pressure, the IUGR, the failed induction… the failed GD test but then back to normal….all of it. A broken feedback loop. And it explains why with my 2nd pregnancy, after hospitalisation at 26 weeks with preeclampsia, upon receiving dexamethasone… my BP returned to normal because it threw my cortisol down (it works like that paradoxically) and bought me another few weeks. It all starts to make sense. Each pregnancy progressively worse, the muscle waste, erratic protein & glucose spill… all of it makes sense.

So obviously, I am feeling introspective and philosophical about this whole thing right now, because initially where I only saw anger and hurt at people having not picked up my Cushing’s earlier… I am now feeling so very, very fortunate that I lived in ignorance for so long… that I managed to have my 3 lovely kids.

More and more, I also think it points less to a pituitary tumour and more to a tumour on the adrenal gland – given that I have had successful pregnancies, cyclical cushings and failed to suppress on dexamethasone. Will be interesting to see what it is, anyway. Oh and I also think my thyroid is fucked to boot. Yay me!

Ah the irony… when I was feeling low, I was angry and upset. Now, my body is screaming 100% anger & fury, I can now only feel some humility and optimism. That’s why I like to write this blog. It’s why I read medical journals. It’s why I like to understand everything that is going on, because on some level even when I am at my worst, I can take comfort in knowing that intellectually, there is an upside…. and that when this is all over, I am off to Medical school and I am going to help people like me.

And yes, I am a complete fucking headcase about today, in case you were wondering. But, you know… I am going to try and sleep… ok… well…. I am going to go and lay down & close my eyes, but not actually sleep. Same thing, right?

There’s a chance I will write again before the appointment, but if not, I will write later today.

Podcasting and picking on disadvantaged groups

Jason and I were sitting on the couch the other night, watching the wheelchair basketball at the Paralympics. One of our old schoolmates is in the Aussie team, has one prosthetic leg (that he had back then), and it led to a discussion about the… umm… cut off point … for what state the legs must be in to play wheelchair basketball at an elite level. The interesting thing was that this guy also kicked arse at "normal" basketball, because Jason used to play against him!

It then led to a game of speculating ‘who had what’ disability. Based on the muscular tone of the legs, or absence or legs, we speculated who was a "full" paraplegic, who was an amputee, etc. After a good… 5 minutes of this discussion, Jason then also lamented how he wishes that he could cut his left foot off. He has a neurological bone problem in his ankle that makes it extremely painful to walk for too long, and I have often sympathised with him and said that I would consent to him being amputated if it was ever ‘mangled by accident’… because then he would be classed as a "disability" rather than just a "fat fuck with a bad ankle". And we could sit and collect all that fat disability cash.

Anyway, our conversation descended into how to go about the removal of said foot without being charged. It was at that moment that I realised something. I turned to Jason and said:

"See, we have to be together forever, because there is noone else on this planet that would ever put up with either of us, talking shit about disabled people like that."

In that vein, we have actually decided to start podcasting. Sure, we might only have 3 people listening, but we think its going to be a fun step. The idea is to give some people some insight into the bullshit discussions that 2 weirdos like us have. I am thinking it will be no more than half an hour, once a month or so, in which we either:

  1. Publicly share our grievances with one another
  2. Allow me to get on one of my comical rants
  3. Talk shit about disabled people and other underprivileged and completely-undeserving-of-our-pisstaking members of society
  4. Make you realise the grumpy old man in a 29 year old body that I live with, and laugh at
  5. Answer questions from our listener(s).
  6. May even be an appearance or two from Mina, if she is so inclined.

We think it’ll be fun. Submit questions for the first one and as soon as we are settled in at the new house, we’ll do our first one. Should be a blast, I reckon.

Some more quality Mina pwnage, just for you, Rob…

Jason: “How come Mina gets so many parties? She’s had more than I have in my whole life.”

Lou: “heh, I dunno… last year didn’t really count as a party… but you can have one this year if you want one.”

Jason: “Yeah, I WILL. I am going to invite ALL my friends to my awesome party.”

Mina: “But you don’t have any friends!!”

Jason: “I will invite all my Facebook friends.”

Mina: “Don’t be silly, Facebook friends aren’t real friends”.

This kid is SEVEN YEARS OLD.