I Told You So!

Let’s just say if I had a dollar for every test that came back clear or every doctor who told me they couldn’t see anything wrong, I would have a small fortune; actually I would be going private instead of mucking around with the public health system. (side note: if you don’t have medical insurance then go and get it NOW, it’s only a few dollars a week but once you have an illness its either completely unaffordable or you cannot be covered, better to have it and not need it than the alternative!).

There was one doctor in particular (I will call her ‘Doctor A’) who vehemently denied I had any valid gynaecological problem, she looked at me and spoke to me as though I was a mosquito buzzing around her face. In the months preceding my operation she and the team she represented had done their best to swat me away. I can recall three instances where she told me directly that there was no way at all that I could have endometriosis or poly-cystic ovarian syndrome, and in hindsight I believe she may have been the point of contact that was stopping me from having any further gyny investigation (bear in mind that when I finally received the surgery it was because another doctor had bypassed her and her team). 

The time after the surgery was a bit of a blur to begin with, I can remember having a very kind nurse in recovery, yet I cannot remember the transfer from recovery back to the ward. Upon arrival back to the ward I was hooked straight up to a PCA (morphine pump) which also contributed to the blurriness. However one thing that stands out crystal clear in my memory is ‘Doctor A’ abruptly entering my cubicle, announcing curtly that I did have endometriosis and then turning sharply on her heels to depart again. Thankfully Mum had the presence of mind to probe for more information before she could escape and ‘Doctor A’ explained briefly that the operation had gone well, moderate endometriosis had been discovered and removed.

Prior to the surgery I had allowed my mind to imagine the feeling of elation that would come with a diagnosis, the satisfaction of finally knowing the source of my pain and having options and information about treating it. I had imagined it would feel like lifting your head out of a dark stormy cloud and smiling a sweet victory grin at all of those who didn’t want to believe me or help me. I was quite shocked to find I felt no such thing. I was ANGRY, I had suffered so much for long and it could have been solved earlier if fuckwits like ‘Doctor A’ had just taken the time to hear me out and do their jobs properly. I was also overwhelmed rather than elated; I cried tears of frustration and sheer exhaustion from the long journey it had taken to reach that point. On top of this I was so sore, I was in a lot more pain than I had been told to expect. Despite only having 3 small laparoscopic incisions I couldn’t stand or lay completely flat without pain bolting through my abdomen, I was also unable to walk.

I asked to see ‘Doctor A’ as I had done many times before, this time however she actually came. When I saw her again I wanted to scream out “I TOLD YOU SO” but choking back tears all I managed to ask her was why? Why had it taken so long for this to happen? Why did she tell me I wasn’t a candidate for surgery when in fact I was? Why did she deny for so long the possibility that I had a gyny problem? Her response contained a lot of shoulder shrugging and pre-prepared bullshit, when it became clear she wouldn’t give me any answers I cried and she left.

Two days later I had the pleasure of ‘Doctor A’ again, she was there to tell me I was being discharged. I couldn’t believe it when she told me, I was still in a lot of pain and had only managed to walk a few steps, I had no idea how I would imagine a whole flight of stairs at home. Nevertheless I cast my fear aside and I figured that my treatment would now be in line with standard procedure for patients with the same condition as me. I also didn’t want to be in that hospital a moment longer than was necessary, so Mum packed up our gear, wheeled me to the car and we left. So long suckers won’t be seeing you again anytime soon! Hasta La Vista Baby!

Rock Bottom.

Being sick isn’t a part time thing, it’s all consuming and even in the cherished moments of wellness, there is the ever present fear of impending sickness for which a contingency plan must be made. There is the pressure and fear of becoming a burden to those around you if you do go out to do something and it all goes pear shape. In addition to this there is a part of your soul that just resigns sometimes, too much for too long, I’m too tired sort of thing. When you have just turned 21 this truly SUCKS. You are finally at the stage in your life when you can go where you want to, when you want to and you don’t have to ask anyone for permission. In my world I couldn’t even go to the toilet without buzzing for a nurse to come and unhook my drip (a skill that I quickly mastered due to understaffing – NO WAY was I going to wet the bed!). So I swung between the two extremes; at one end of the scale I was miserable, didn’t want to go anywhere, do anything or see anyone. At the other end of the scale I made big plans in my head and felt I could do anything if I just pushed my illness to the side. Happy medium was not in my vocabulary at the time. An example of this pendulum mentality occurred in March when I was due to go to a music festival that my girlfriends and I were turning into an annual event. I had been given the tickets for my birthday and a week out from the event I still fully intended to go, despite the fact I was still in a hospital on the tail end of a two week stay. Four days before the festival, sitting in the hospital, drip in arm, hospital gown on, it hit me like a ton of bricks that there was not a chance in hell that I was going to be able to make it, I couldn’t get to the TV room without a wheelchair, there is no way I was going to be able to rock out with 20,000 people and camp for 3 days. Seems so obvious in hindsight but at the time I was pretty devastated. F**k this thing, f**k it whatever it was, making me so sick and stealing my life. To cut a long story short I sold my ticket and proceeded to sulk miserably. Mum, bless her, managed to score cheap flights online to Wellington, my sister and I had never been there so she booked them for the middle of May. It was such a lovely gesture and cheered me up considerably. My mind was in overdrive planning touristy adventures and picking out accommodation. For a brief second I had the horrible thought ‘what if I’m still sick then?’ but I quickly brushed it aside, the trip was two months away I’d DEFINATELY be better by then. March came to a close, as did April and still my condition had not been resolved. As I mentioned earlier this was a hellish crazy time for me, my hopes were sky high - my trip to Wellington was going to mark better times to come. I was due to fly out on Wednesday. The weekend prior to that, sitting in the hospital, drip in arm, hospital gown on, it hit me like a ton of bricks AGAIN that there was no way I was going to be able to get on that plane.

If I thought I was disappointed last time, this was a whole new level of despair. The thoughts that had been lingering at the edge of my mind, that not being alive would be better than living this pathetic pain full half life, were beginning to come to the forefront of my mind. I had lost all hope. I was struggling to see myself living a full and happy life again. I didn’t want to be strong, I didn’t want to be positive, and I didn’t want anyone to tell me that it would get better. Being positive and strong hadn’t helped and so far things were only going from bad to worse. I was on a one way street heading straight towards rock bottom. And then I got my lifeline.

It was the Tuesday afternoon before I would have been flying out. Mum sensing my despair had really been pushing the doctors to do something for me, she knew that I couldn’t carry on much longer the way things were going, something had to give. I think I mentioned earlier how there is such a shortage of resources with the different specialist field teams. Once you are assigned to a team it is very hard to get another type of doctor to even take a look at your file. For months Mum and I had been ‘lobbying’ the gynaecology team to have a look at me, basically begging them to try and help me to absolutely no avail. So you can imagine my surprise when the head specialist/surgeon pulled the curtain of my cubicle back an announced that he had a cancelation in his schedule and would be performing a diagnostic laparoscopy on me the next morning.

On May 19^th as my sister was at the airport about to fly to Wellington, I was preparing for surgery and I couldn’t have been happier. For a split second the thought crossed my mind ‘What if they don’t find anything? What if I really am crazy?’ but deep down I knew that this surgery was going to change my life. From where I stood (well lay), things could only get better.