Roaccutane

I was very upbeat on Thursday night after the appointment. I had been anticipating this appointment for weeks. However, in the day or so before that all important visit I began to have serious doubts. Call it a bad feeling, if you like. I was nervous more than keen. I worried. And I still don't know now whether these worries were unfounded or not.

I got what I wanted. On November 8th I will receive the prescription for Roaccutane, the med that could finally and permanently remove my acne. I dearly love what this med promises, I have longed for the results it will provide for around ten years. So why am I baulking?

It is not in my makeup to fear a med. Why should I fear a med? Surely if it's being prescribed then it should be safe. And if it's being prescribed then it's been legalised. And if it's been legalised then it's been subject to any number of trials to test it and work out its kinks. In a perfect world, Roaccutane would have no kinks, but this is not a perfect world and the med's track record is patchy -- with results! -- at best. Unfortunately, this med holds a long list of potential side effects which include

• Depression
• Tendonitis
• Arthritis
• Neurological symptoms
• Vision problems
• Joint pain
• Bone, tendon, and ligament calcification
• Hearing impairment
• Respiratory symptoms
• Rapid breakdown of muscle tissue
• Rashes
• And the list goes on (seriously...)

I've opted to list the ones that bother me the most, in no particular order. So, Roaccutane was originally developed as a chemotherapy medicine, due to it's design to find and destroy rapidly dividing cells (which cancers are comprised of). It is still used for cancer treatment, as well as for acne. Which I think is interesting. And I think that it's targeting of rapidly dividing cells makes the side effect list make sense, to varying degrees. It's also non-selective -- which I have very little doubt is it's major pitfall. If it were developed to target specific cells I can see it being a hell of a lot safer. But it has not been developed in that way and I'm not a scientist, I'm a seventeen year old girl with issues and a lot of time on her hands. Knowledge helps me feel more secure. Initially I was somewhat put off but I'm starting to calm down about it again.

It's really not that bad. In all seriousness it is unlikely that I'll experience many of the side effects on that list. And in reality there is only a minute chance that something irreversible will happen to me. If the chance were high it would not have been legalised. Obviously the depression element is my chief concern with this med. Now, I have done some legitimate research into this and there have been a number of studies done over the years. All of which have proved inconclusive as far as to whether or not Roaccutane is causal to depression. Obviously, there are reported cases and as such the producers have added a depression/suicide warning to the med's label but there is no clear connection. So, while I'm going to have to be monitored due to the pre-existence, it's no guarantee that it gets worse.

And that is something I will cling to.

Next up is the respiratory factor. That's an interesting one and the internet is non-specific on what exactly it can do to my respiratory system. It's thrown up respiratory tract infection, voice change and tightness in lungs. I don't know what any of this means for my pulmonary hypertension, but it should be an interesting question to ask. Now the final thing on the list of side effects that really stung me were the ones that concerned my joints. I'm a little bit shaky on this one. My joints aren't great as it is and I'd hate for them to deteriorate further as I don't think I could cop that. I've had to give up the exercise bike because of the intense pain it's causing the top of my tibia or fibula (can't be bothered distinguishing). Structural damage that's simply not worth exacerbating any further, I don't think. So yes, I would be absolutely horrified if any of my tendons, ligaments or bones calcified, and I would be horrified if I got to be on the receiving end of any more tendonitis. I would be in fact horrified if my joints caused me any more pain at all. I'm starting to think, as I type this, that it worries me more than the depression does. My ongoing difficulties with my joints are part of the reason my depression has continued to exist. Increasing these problems are essentially an invitation for the depression to resume a more stricter regime. 

I guess, categorically, you would call it the fault of the med. But you and I both know that the depression never ceased to exist. So the med alone hasn't invited it back into my mind. It's more or less a permanent resident. I simply have marginally better control of its influence, at the moment.

So that's me dealing with Roaccutane. Evidently, it's pretty scary stuff. But then, what med isn't? At the end of the day they're all volatile enough to permanently maim, if not kill you, if you're unlucky enough. Look what the pill did to me. No one expected that. But I'm still here, still here with limited options, and I'm now very prepared to take my chances with Roaccutane. You will not be able to sway me otherwise. 

The other interesting thing to come out of Thursday was that between the March and August exercise stress echoes, the pressure in my lungs actually increased slightly. Very slightly, I'm assured, but nonetheless increased. Now, while I can see why the cardio hid this from me, I'm not quite happy about it. I feel like I had a right to know. And of course, I do have a right to know and that's why I know now. The premise is that the pressure should have decreased from its March reading. When I ran that stress echo in March I was pill free. In August I was still pill free. So I don't know what the go is there, but I'm not happy and kind of stressed about it. I'm being told again and again and again not to worry until April. If it's still increasing in April, then I get to worry, which is just common sense. But naturally, I'm kind of worried now anyway. I, despite my pessimistic nature, thought that it would all go away just as it had at other times. Apparently not. I also thought it would be a much quicker process, as it usually is, but apparently not. And now that seed of just how bad it could be has been well and truly planted. I'm quite nervous about having to deal with this forever. Of course, I have acknowledge this concept of forever before, but I didn't quite think it would happen. Prepared for the worst, but not really, you know? I guess what I'm getting at here is that it's a little bit more real now that it's doing the opposite to what it should.

It's suddenly quite real. It all is. It's real and in my face. And outwardly I'm cool with this. You won't catch me cursing anyone or threatening to incinerate them quite as prolifically as you might here because on the outside I am long practiced in staying in control. 

And I have to be in control. That is pivotal.

- Sky

Damn logic, damn it

I made a very conscious decision yesterday to actually get fit. Now, I'm sure you're all laughing, but I'm being deadly serious. I am going to get fit. Why? Because it's something that nags at me constantly, I figure its going to be a good way to help me keep tabs on the improvement (or lack thereof) of my pulmonary hypertension, keep my weight down -- because we all know that that is a concern of mine that torments me mercilessly -- and it's a good way to work out anger I'd otherwise carry around with me for an indefinite period of time. And I can carry anger for a long, long time if I so choose. And even if I don't choose. It just hangs around because I have this amazing ability to get angry for a bit, and squash it down into a box for a few days, weeks, months as long as I need. Foolproof right? Yeah, um no. Unfortunately its just one of those things that stacks up to unbearable proportions and comes out all lethal and deadly like.

Which is certainly not ideal. And certainly unideal for a person such as myself who is... I've forgotten the word, which is a shit because it was a good one... it was to do with unbalanced, easily upset, fragile isn't the right word either. GOD DAMMIT! This is frustrating. I'm just going to drop it. Where was I?

Anger, exercise. Okay. The other really brilliant thing about getting on the exercise bike is that I don't really think much either. And the beauty of cycling out the anger, through the pain and working out the other emotions I'm carrying at the time is I feel so much less inclined to cut. Which is amazing, and unless you're like me, you cannot begin to comprehend just how amazing a revelation this is for me. Of course, naturally, there are drawbacks -- as with everything -- and it's only a small portion of my day that I do this and as such there is still copious amounts of time to cut.

I feel kind of guilty touching on my cutting all the time. It's pretty confronting, but its unfortunately quite a significant portion of my life. Some days I'm a winner, not cuts ladies and gentlemen, and other days I'm a loser and it plays on my mind and I engage. And I like it. Embrace the scars. But this is where I get a bit iffy, you know. Embrace the scars, it's all fine and good. Just don't ask me about. How conflicting is that?! I'm not concerned by my scars until they're seen. Not concerned until you are. Don't care until you do. If it bothers you, I'm uncomfortable. Ridiculously guilty. How COULD I ever do something like that. But at the exact same time I want to indulge.

So this is pretty much where I realise that I'm suddenly not as okay with myself as I previously thought. Damn logical thinking, damn it. I guess I'm kind of stung by this realisation. It's a massive change of tune. I was okay with it, I was perfectly happy. Well not happy, that's a lie. But I think you know what I mean. It's like, one day I'm perfectly okay with what I've, well, done to myself. And the next I've sat down and had a two second think about where everything is going and suddenly I'm turned on my head. Everything I've believed is a facsimile of a sham. Damn logical thinking. Damn my logic. Damn my brain.

Do I just over think everything? Is that what's happening here? Do I simply confuse myself at every turn or is life legitimately this confusing. I cannot decide. Speaking of things I cannot decide, everything above was not what this entry was going to discuss. But alas, I have wandered off topic again. Why is it that I can spit out copious amounts of crap when it doesn't matter, but when it does I am rendered mute? I had hoped racing had cured this, and more or less it has, my confidence is extreme -- so different to what it once was. But I guess it couldn't have been a miracle cure.

I'm not sure there are miracles in life. They don't cross my path. Just like helpful, no strings attached, meds don't cross my path. They are all conspiring to maim me or on a much more extreme level, kill me, you know, plot my death. So Thursday is the big day and I was pumped for Thursday, I was. 'Ready for it' I said, 'come and get me'. And now I'm hesitating. A little bit worried. I woke up with so many whiteheads this morning that my face actually hurt. Yes, that's right, it hurt! It hurt even more popping them and I'm going to lose my shit severely if this doesn't get resolved on Thursday. There will be drugs, it will go away. I'm done, I'm over it, I want to be pretty too. Is that too much to ask?! It better not be.

But as such, until all this is resolved, I'm just going to cycle through the pain. Cycle through the pain because its easy. But knowing that this is a false replacement for cutting, I'll be doing that too. There's no way to sugarcoat this stuff. That's just how it is.

- Sky

Sometimes I Question my Humanity

(This blog gets a little bit candid and extreme as it reads down, which oddly enough was not my intention when I begun it. But God it was good to get some of my thoughts out. Consider yourselves duly warned)

Like today, for example.

Mum walks in and tells me a family friend has just found out she has breast cancer. Yep, breast cancer. That cancer that is suddenly prevalent, but strangely has never crossed my path. And yet now it has. But how do I feel? I don't. I am indifferent. It has no direct impact on my life and as such, no effect on my emotions.

Has my empathy died? Am I a horrible person? What does my indifference mean? Have I really steeled myself to the horrors of this world so well that I can take all curve balls in my stride? I'm almost nervous as I ponder this. I wonder if I'm just storing the feelings. Storing and storing and storing until I reach capacity and fall apart in a most spectacular way. Having depression is like sharing your mind with a separate entity. Depression influences my thoughts, my choices the way I see things and how I react. It doesn't dictate which parts I listen to, but it certainly plants the seed. I just have to choose the easy road or the hard road. The easy road is allowing myself to become immersed in the negativity depression feeds my mind. The middle road is recognising it. The hard road is beating it. I can't beat it. 75% of the time I tune into it, listen to it, believe. 25% of the time I recognise it and consciously acknowledge it before redirecting my thought.

I guess what I'm getting at is that depression has adjusted me. Now, whether that adjustment is for better or worse remains to be seen. Evidently, I am no longer as easily wounded by emotion as I once was. But does that mean that I am less likely to notice when emotion threatens to destroy me? It could be acting to destroy me now and I could be blissfully unaware due to my steeliness. I feel powerless to change this. I am powerless to change this. Depression is governing and I am working around it, as best I can. Which is actually pretty frustrating considering that my mind is mine and not the depression's. I'm not schizophrenic in case you're wondering, nor do I have any kind of personality disorder. 


Having just read over the above paragraph, I'd like to expand on the "easily wounded by emotion" remark. Obviously, I do get wounded by it. But in case you haven't noticed, I deal with it much more subtlety or better, if you like, than in previous years. Just as your body adjusts to pain (for better or worse) so does your brain. Mine has. I hide behind predicting the worst. And as such, am less affected by such a negative outcome because I was expecting it regardless. I make no apologies for my negativity, I never asked to be this way. I didn't ask for any of this. I'm just subconsciously adjusting to the cards I've been dealt, for better or worst. I suspect its the latter. Not that I'm into freely admitting that. It's pivotal that people believe I'm okay.

People have to believe I'm okay in order for me to move forward effectively. My narrowmindedness, as far as where can I go from here is concerned, is my strongest ally. I believe that there is no other way to do things than to just get on with it. Sometimes I hate myself for it, but I do it. There is no alternative. I cannot sit something out. Life is too fast paced. I get affected by stress inwardly in such a shocking way that it's ultimately safer to press on no matter how hard the battle. Call me stubborn, but that's just how I've worked out. Trust me, it's for the best.

I feel like I've now gone full circle on that branch, which now brings me to the next item on my agenda. The next thing that makes me question my humanity, and wonder if I am more deranged than I perhaps initially thought, is my tendency to cut myself. I have a friend who engages in the same behavior -- that's a lie, I have many friends with the same tendency, but I'm referring to a specific friend -- and we have pondered together, on a handful of occasions, what kind of sickos we are. We asked ourselves, what kind of freak does this to themselves? And I have no answer for it. Because I don't know what kind of freak. Obviously, I am such a freak, but I don't know what kind. How does one go about intentionally harming themselves? So of course I'm sitting here questioning my own humanity. I'm lacking severely in the empathy department and I'll lay into myself, physically, when it all goes to shit. And even when its not going to shit -- well it is, you know that because you read this blog -- I feel compelled to cut. Never listen to anyone who says cutting is not addictive, because it is. It is a closet addiction and does not receive the attention it deserves. One day I want to dazzle you all with a story about me going clean, but at this point I do not for see such an occasion.

Stupidly enough, I read about people who attack their stomach areas. And I find myself wondering how anyone could do it there! I just couldn't. I don't know why, but I just couldn't. It would never cross my mind to cut there, ever. Too easily exposed, I fear. You absolutely cannot deny them if they are there. You categorically have to admit the truth. Which I cannot do. After three years I cannot categorically admit the truth. I would rather die than own it. I am an inhuman freak who is willing to maim themselves, of their own accord, and I would not dare own this beyond the pages of this blog. I am slowly becoming okay with depression, I can talk about that freely and I hope to be able to help people openly with it soon. But, I am a closet cutter. I will categorically deny it if you ask me. What? Me? Do that? I would laugh in your face. Except in the faces of a handful of people who have proven to me that they are worthy of such a truth. You are, more or less, included in that handful if you find yourself reading this because I've handed you the almighty link.

And this is why I question my humanity. This poor woman has breast cancer and I simply feel nothing for her. I cut myself and I am not appalled. How you would categorise me is entirely dependent on what you know and how you feel, but I for one, would be leaning towards weirdo, if not something more extreme.

- Sky

I Had a Kick Arse Post but Blogger shut me Out and I Lost it...

And I am NOT HAPPY ABOUT THIS AT ALL! It was very heartfelt and interesting and now I don't feel like writing it out again so I'm going to bullet point it for my own convenience...

• I saw my cardiologist on Friday. Of all the doctors I have come across through the duration of my life, he is my favourite. He's interested, he cares and he genuinely wants to find answers. It makes me sad that he's leaving the practice and is thus unable to see any patients for six months. But I highly recommend him to everyone in six months time from November. Seriously awesome doctor.
• The pulmonologist hinted that my visit to see the cardio would be a "see you in six months to run an exercise ECG". Naturally, after waiting one hour and twenty minutes, this was not the case. My blood pressure is of concern, as it is always higher than average when measured and as such I will have to wear a blood pressure monitor for twenty-four hours so they can get a correct measure of it. I also have a tentative exercise ECG scheduled for April with the follow up review with a new cardio. 
• The real news out of this visit is that he (the cardio) thinks that the meds unmasked a condition I was already prone to/was going to get anyway. This is, in a sense, much brighter than "you're allergic to the pill" but the outcome does not change. It is still not safe for me to take the pill, which is majorly frustrating. As such, my cardio has also decided that he (and the pulmonoglist, who apparently quite enjoy discussing me behind my back) have reached the extent of my knowledge and they're looking at sending me to see some associate professor, who, in the opinion of the cardio, is the best in Victoria. It is not set in stone, but I'm almost interested to hear what he has to say. Mind you, there is also a very real chance that he won't know what to do either.
• Now, this leaves me in a most interesting position as far as my meds go. Seeing as I am no longer able to take any meds that contain oestrogen or progesterone due to the fact that they exacerbate my pulmonary hypertension, the only real option (that I am aware of, and this could change on the Sept 22nd) seems to be roaccutane. Now, if you're not familiar with roaccutane, I'll fill you in a bit. This med has been linked to depression/suicide in the US. Not quite safe for someone like me, right? Right. That's why I haven't seriously entertained it before now. But with my options direly limited and everyone else convinced that I'm 'better', I think it will be okay. And in a perfect world, I won't be any worse than I am now. But I want to caution everyone now, in the event things do go wrong, that I need you to watch. Because I, if I even notice it at all, am unlikely to point it out. I'll suffer in silence before I dent my pride. So, as my trusted friends, you have been warned. 

That was basically that highlights of the original post. And seeing as I'm back into the writing mood, I'll keep talking for a bit, because I know you're all just so starved of what I have to say!

I feel like my moods have been really shifty lately. I'll snap for no reason, or burst into tears without warning. But in saying that, I feel I've been quite stable as well. Which is not new. I do go through these periods of stability before one thing or another upsets my tedious balance. I work hard to keep this balance, I'll have you all know, it's not simple. It's very, very tedious and easily knocked. And this is why I know I'll be unbalanced again sometime and things won't be quite so pretty for me. But I'll savour the calm before the storm while I can, because that's all I can do.

And try not to cut, because my thigh looks spec-fucking-tacular. Not that I hate it either. I am at peace with my scars and I always have been. They're the only sign of an inner turmoil I'm surviving, day by day.

- Sky