It's a new dawn, it's a new day and I'm feeling..... Average.

Happy New Year!

(I'm a bit late, I know - But better late than never!) 

I would like to apologise for letting this whole blogging thing slide (yet again) and being so slack with updates - Truth be told, there's not been much worth reporting... Well, certainly nothing of note. Just more of the same ol', same ol'.

I was, however, lucky enough to enjoy a lovely break away in Queenstown where I forced myself to put all the drama aside and just be free.
I may have forced a little too hard and pushed the limits just a little too much, and whereas I paid for it dearly, I never once let on that I was in agony or exhausted.
I didn't want a trip away to be limited or dictated by my suffering.
And it didn't!
I got to experience some things that I'd likely never have had a chance to experience if I hadn't decided to wear my Big Girl Panties

For someone who is a native Kiwi/New Zealander, I am seriously ashamed of the fact I've never seen the true extent of New Zealand's beauty by venturing outside of Wellington.
Sure, I've done the odd trip to Taupo or Auckland, but they were always for specific reasons, never to just sit back and enjoy everything there is to offer.
I was so taken aback by Queenstown and Wanka. I never wanted to leave.
I have vowed to return as often as possible - And I think the next time will be when everything is covered in snow.

Christmas and New Year was delightfully quiet.
I cooked my first Christmas Dinner... In my underwear.

Put it this way, it was the hottest day that Wellington has seen since 1934, coupled with my normal (how sad is it that I can now say that?) hot flashes, all whilst slaving over a hot stove for 3 hours.
Was I hot? Yeah, you could say that... If you are proficient in understatements.

It was so hot in fact, that at the end of it all, I was too exhausted and hot to enjoy the fine spread I had put forth.

New Years Eve was spent indulging in a *gorgeous* bottle of wine whilst Skyping my Dad in the UK.
Me? Oh, I'm I total party animal.

On the health front, I have been... Well... I don't know.
I've not experienced any marked improvement.

I had a follow-up appointment on the 24th (yes, Christmas Eve) which was supposed to give me an indication as to where we were going to be heading treatment wise.
I was really hoping that armed with four substantial hospital admissions, three of which whilst on Zoladex, was going to add weight to my case and prompt them to look further into treatment options.
I could not have been more wrong.

I came out of the appointment feeling (surprise, surprise) overwhelmingly let down.
Not only did I not see my specialist - I was graced instead, with a visit from one of his lame excuses for an associate registrar - but the twat was going to discharge me from Gynae.
Dishcarge. Me. From. Gynae.

To add insult to injury, when I resisted and said that under no uncertain terms was I going to accept being palmed off to the Chronic Pain Team (who, bear in mind, I have been working closely with for the last four years) he then went off to speak to my specialist, then came back and delivered to me the *exact* same plan as my initial appointment in September.
Verbatim.
''So, we're going to do three months of the Zoladex, then come back and establish where to from there''.

Hang on.
Hang on just a God-damned-bloody minute.
I have just told you, which you would already know if you had read the f***ing notes, that I have had a further three admissions, all 6-10 days long since my initial jab of Zoladex.
That's once a month!
Each admission is due to worsening pain... That means, my pain has increased with each jab.
Let us not forget that each admission has occured within five days of me having the jab administered.
Clearly this method of treatment is not working, yet you're going to sit here and tell me that we will continue for another three months?

Sure.

Merry fucking Christmas to you too, you muppet.

I think it would be fair to say that the day before Christmas, I was feeling anything but merry.

I also had to help him complete the medical certificate I required to take into Work and Income in order to receive a Sickness Benefit - And I have just found out that he didn't even do that right.

I should also add, that right on cue, two days after receiving round four of the Zoladex, I wound up back in the A&E... And guess who the Gynae Registrar was?
And then guess who then discharged me without treating me?

Honestly.  
Please.
Someone give this guy a scalpel, because I'm sure he couldn't butcher me any more than he already has.

I am a couple of weeks out from receiving my fifth round of Zoladex, and I can honestly say I do not feel in the slightest bit better.

If anything I feel worse.
And to add to the total head-f*** that is my situation, I have been experiencing horrendous pregnancy symptoms identical to those I experienced with my Daughter.
I am absolutely 110% not pregnant.
The two rounds of peeing in a jar and also having blood HCG levels tested proves this fact.

It might sound cruel to those who are trying to conceive, but words cannot even describe the level of relief.
On the flipside of that, it further emphasised the fact that when and if the time comes, I will almost definitely have a struggle in conceiving - And that upset me.

I'm trying to find the positives in my plight, and it's a daily struggle to try and find those.

I have, however, decided to be proactive and do something to pay it forward.
I had always planned on adding to my current bicep tattoo, to create what I am referring to as my 'Endo Arm'.
Both my arms, but particularly my left, are covered in scars from IV lines. My veins are so shot, that one of my favourite nurses has told me that anyone who didn't know my history could be forgiven if they assumed I was a Junkie.
I want to detract from that and create a work of art and something that I can be proud of and something that tells my story.

I currently have ''Trust your struggle'' in Braille along my left bicep.
It comes from the quote: Pain breeds strength. Trust your struggle.
I remind myself of this every day.

Endo Warrior

So, I will be building on that, and adding a whole bunch of stuff that is special and symbolic to me and is representative of my journey with Endo.
I have been lucky enough to have found an artist (the same one who did my Braille) who has offered to tattoo me for free.

(He is amazing too - I am in love with his asthetic - check him out: http://gilltattoo.co.nz/portfolio/category/gallery)

Tattoo's aren't for everyone, so I completely respect and understand why something like this might not be up their alley, but I adore them. I've always had a love affair with tattoo artistry and if I was more artistically inclined, I have no doubt I would aspire to be a tattoo artist.

Seeing as my tattoo artist has been so unbelievably genereous in his offer, I have decided to set myself a goal of raising $800 (more if possible) for Endometriosis New Zealand. An organisation which has been of unbelievable support and assitance to me and many, many other sufferers of Endo.

If you click on the widget below, it will take you directly to the site - And any donations go straight to Endo NZ... Nothing passes my desk.
(And it's even tax deductable - So you can claim on it if you so desire)

Any help would be more than appreciated, as these guys are a 'Not for Profit' organisation and they really do make all the difference.

I'm not asking to find a cure. I'm just asking for help.

Let's start this year on a good note


Love and Sunshine,


Serenity
 

Clarification

I've had a couple of days to kind of cool down and bring myself back to centre.

Unfortunately, one of the major downsides of this disease and the treatment I am currently receiving is that my moods swing from bouncing off the walls happy, to bouncing off the padded walls crazy.

It's no secret I've been completely overwhelmed by the last few months, and this latest admission was somewhat the straw that broke the camels back (if you will).

To add to that, I've never had the feelings of others to consider when I've been dealing with the stresses of this disease - and by that, I mean I haven't had the support that I have nowadays, so I was used to withdrawing and dealing in my own way, at my own time - and it never affected anyone else.

 

It's come to light (and quite unfortunately, too) that there are people who not only care about myself and this whole situation, but who also care very much for the other people in my life who are involved in this struggle.

It's a blessing to know I am not alone, but it's heartbreaking when you learn that you can inadvertently cause undue stress and worry by some over enthusiastic venting.

 

If you are reading this now, you will know I am talking to you, and I wish to offer my apologies and reassurances. I know it's already been discussed, but I feel the need to personally apologise and clarify where I was, mentally and emotionally, at the time I wrote the entry that this is in relation to.

First off, let me just say that I could never, ever do anything to harm myself or give up like that.

When I wrote that particular post which would suggest I might be inclined to do so, I was in an extraordinarily defeated headspace.

I was feeling upset, heartbroken, let down and increasingly frustrated towards finding myself in this position, yet again.

What I was (very poorly) trying to convey was that, on a mental and emotional level, I am completely wiped out.

I'm so tired of having to put on the brave face and keep truckin' on.

I resent the fact that I've coped this long, all whilst maintaining a smile and sense of humor, because I feel as though it takes away from the severity of the situation at hand. I mean, who could possibly suffer as much as I say I do, all whilst laughing and joking?

Some days I would really, really like to play the victim - but then who am I to complain? It could be so much worse. I would really like to behave like I am as hard done by as I feel I am some days.

 

I am so scared for my daughter.

What if she grows up with Endometriosis?

I hope to God that it will not be as hard for her as it has been for me.

I hope she will know the joy of carrying a child and learn of and experience the pure, unbridled joy and love that being a Mother brings.

 

I hope she doesn't resent me.

 

It is because of Eden that I know I must keep fighting.

It is because of Eden that I know I must raise as much awareness as possible.

It is because of Eden that I know I must keep smiling.

 

It is because of Eden that I DO keep fighting.

It is because of Eden that I WILL keep raising awareness.

It is because of Eden that I DO keep smiling.

 

She is my joy. My heart. My life. My world.

 

It is because I am a mother that I can understand and appreciate your concern and why I have deemed it necessary to clarify.

It is because I care.

Because I care about him, and by proxy, yourself.

 

 

Love and Sunshine,

 

 

Serenity

Xx

 

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To you, from me.

Dearest Endo, 

We've known each other for quite some time now, and I haven't really known how to tell you how I feel.

I keep second guessing myself, as I am afraid of what might happen if I tell you the truth.

 

For a long time I have ignored my feelings towards you, figuring that by doing so, you might leave me alone. Case in point: When you ignore the negative behaviour of a small child, eventually they will recognise that good behaviour is what gets rewarded and not the naughty stuff.

 

I have come to the end of my rope though and I can't ignore this any more.

 

I hate you.

Completely, utterly and undisputedly fucking hate you.

 

You have ruined, and continue to ruin my life.

You have taken away so much from me and you're still not content.

I have worked my ass off trying to build myself back up from the ruins you left me in, and you have seen that I have made headway and you have been intent on tearing down the walls I've built, exposing me and the mess I am in, leaving me feeling alone.

Vulnerable.

Naked.

 

You seem to thrive on making life hell for me, and when you realised that I was forgetting about you and was making something of myself, you fought harder than ever before to make sure I would never quite make it.

 

You have made it impossible for me to be in an adult relationship, because as soon as I form one, i quickly becomes a relationship between an invalid and a caregiver.

 

How much more do I have to lose before you have satiated your appetite?

How much more suffering must I go through before you are happy?

 

More than anything, I want to tap out and let you win. I cannot be bothered dealing with you and your baggage any longer.

 

I want to be a normal 24 year old. A normal mother. A normal girlfriend. A normal friend, daughter, niece. A normal woman.

Is it so wrong to just want to live a relatively normal life?

 

I am sick and tired of dancing to your tune.

I don't want to dance anymore.

I am exhausted.

 

Please.

Please.




Just.

Please.




I can't do this any more.

 

You win.

Posted with Blogsy

A rapid decline

I figured if I wanted to keep the blog current I would need to update it whist the action is happening as opposed to trying to recount events at a later stage.

So, I thank the Technology Gods for the fact Wellington Hospital has woken up to the fact they need to offer wireless service, and I am able to get online from the iPad in order to post this (at a cost, but hey)... All from the discomfort of my hospital bed.



It's happened again.


I feel pathetic as every time I've wound up in the ER (or A&E, depending on where you're from) it's the same story: "It's my normal pain, but way, way worse".

I should really stop saying that, as it would seem as though my body says "challenge accepted" and ramps it up tenfold.


I have never been scared by my pain. I've been upset by and frustrated by, but never scared.

Last night, I was scared. Terrified, even.

I am a silent sufferer. I have the tendency to withdraw and retreat into myself whilst dealing with acute exacerbations of pain. I breath relatively normally, I can (for the most part, save a few curse words and unladylike grunts) hold a conversation and relay exactly what it is that I am experiencing.


Not last night.


Last night I came into the hospital writhing and bawling my eyes out (something I have never done, as it does nobody any favours) barely able to breath or form a sentence.

I was seriously, seriously freaking out over the severity of the pain, as I have never, ever experienced pain on that level before. I lost any and all ability to cope via my usual means.

Being as familiar with the hospital staff as I am, they were able to see this and I was rushed through on a Code 2 - meaning no wait time and high priority... A nice change from the usual 2-3 hour wait.

It did however, further emphasise my fears that something is quite seriously wrong, as I've never had a rush through like that.




I had to spend four hours down in ED whilst they tried to get my pain to a level where I was comfortable enough to withstand the trip up to the ward.

This in itself was no easy feat.




31mg of IV Morphine and 10mg of IV Ketamine and I was still in an absolute state - unfortunately I now had hallucinations and horrendous nausea and other side effects to deal with on top of my pain.

Not a fun evening, at all.




Ketamine and a cute doctor in between your legs on a Saturday night... Sounds like a good time.

Totally not. I'm so sick of feeling like a hand puppet.




So, that brings us to right here, right now.




On a scale of 1-10, my pain is at a barely manageable 9.725, I've not slept properly since Tuesday night.

I was meant to see a whole bunch of friends and their children today, but obviously that had to be cancelled.

But worst of all, my little girl yet again gets let down.

It's a sad, sad moment when you ring your child to let them know you have to once again cancel plans.

It's even more sad when your child, at a mere four years old (though closer to five) is the one sounding like the parent by consoling you.

"It's OK, Mumma. You don't have to be sad. I am a little bit upset but you don't have to be sorry".

I guess if there's one thing my daughter will have gained from this piss-take of a situation, it would be a huge amount of empathy and understanding for those suffering in any shape or form.




I don't know where this latest admission is going to lead. There's nothing they can do at this present point in time, as its the weekend so resources are limited - this is something I have gotten used to, though I still find it incredibly frustrating.

I had a basic internal scan taken at some ungodly hour of the night/morning, which yielded no real results, which while reassuring, you can't help but wish that there was something there... As validation and verification that you're not going crazy or making shit up in your head.

The number of times I've had the term "Phantom Pain" bandied around in relation to my situation is enough to make a girl go nuts.




I'll have a more thorough, comprehensive scan taken tomorrow - though I think they're questioning whether they will in fact go ahead with that one, seeing as I only had one a couple of weeks ago that didn't show anything of note - aside from some free fluid which would indicate a cyst had ruptured.




I feel like a broken record for saying so, but I really cannot do this any more.

Just when I'm convinced I can't feel any worse, BOOM, I get markedly worse.




This is my fourth admission in three months.

I genuinely cannot cope with this any more. I am at bottom. I don't want to do this any more.

Last night when I overheard the nurses talking about how the amount of pain relief I had been given would generally knock out a large man, all I could find myself thinking was "Good. Give me more. Knock me out. I don't want to play this game any more. I don't want to wake up. Who's gonna care anyway? Nobody's going to have to worry about me or bail me out anymore. No more stress for anyone".




Yeah.

I am that over it.

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An obscene amount of snot and tears

An unbelievably beautiful display of waterworks from yours truly.

I sat down to type a blog post about this situation, but the words just wouldn't come.

My mind is racing right now.

"What have I done?"

"Have I just blown it?"

"Can I recover from this?"
"Why is this happening again?"
"Are you really this stupid?"

So, I apologise for this tangent in advance - But I think that no amount of words, irrespective of how much heart there is behind them, will give as honest a portrayal as putting myself out there, snot and all for the whole world to see.

Take me as I am...

So, it's certainly no secret that I'm a bit of a talker, or that I'm a little bit mental.

I want to get my story out there using any platform possible as a means to help as many people as possible.

I'm going to make a concentrated effort to be as regular with updating the blog and vlog as much as I possibly can. I'm aiming to update at least once a fortnight.

So, here I am.

If you can't stand the video version of me, just continue reading the posts - But whatever you do, get the word out and pass it on.

Let's put a stop to the shoulder shrugging and the humming and ha-ing that we get with Endo.

Let's get our shit heard, ya'll.
It's time for a change in the way this disease is perceived.



Love and Sunshine


Serenity
xx

"...this ain't the way it's supposed to be..."

".... It's like a heatwave"
But instead of burning through my heart, it's my damned head that is suffering from a perpetual heatwave.

Menopause sucks.

These days, what I hate even more than menopause, is people saying "Oh, wow. You look so much better than expected". Bit of a back handed compliment.
I'd actually rather someone said "Oh man, I'm so happy you don't look like shit, like I thought you would".
As a sufferer of a disease which very few understand and which has very few, if any, external indicators, if I look 'OK' then I must be fine and I'm just complaining for the sake of attention.

Whenever I'm in hospital, God forbid should I decide to put on my War Paint. Asides from the few nurses that I have become extremely close with in the last few years, anyone else who comes across me, be it doctors, nurses, custodians or fellow patients, the general response is "You look so much better, you must be so happy to be going home" or "You look great, we'll start the discharge process and get you off home".

Do I really have to look as awful as I feel, just to be taken seriously? That just seems cruel.
We have the Look Good, Feel Great campaigns for female Cancer patients - And I am not for one minute saying that they don't deserve it, or that my affliction as is bad as thiers - All I'm saying is, when you feel that disgusting, sometimes a coat of mascara, some colour on the cheeks and a bit of lippy can be enough to perk you up and help you face the day and give you a bit of confidence back.

(For the record, Look Good, Feel Great is a programme which I highly, highly respect and admire and have, on many occassions, tried to become involved. Due to my own personal circumstances though, I have been unable to help to date)

For someone like myself who has given up and lost so much as a result of my Endo, my confidence is all but destroyed. My self esteem is all but non-existant, and I wouldn't know the meaning of the term 'self-love', let alone practice it.

Maybe it's shallow and superficial, but painting my face helps me see the day through - It's all about putting up a front - I'm fairly confident that if you looked in the mirror and saw the face on the left, you'd want to do something about it, too. Am I right?

Maybe I shouldn't have to put up that facade, but the truth is, very few people have the understanding, or the patience to understand what it is that is being dealt with. So, with that, I have no choice but to get on with it.
Not only that, but I don't want to have to stop and explain why my face and skin look that way, or why I'm so miserable

This blog has been sorely neglected the past two months, and with only two blog post to dates, I'm not entirely sure you could even give it the title "Blog".

The last two months have been really rather difficult.

I have just been discharged from yet another nine day hospital stay, and I also had a five day stay in early October - Three substantial hospital stays in three months. Seems a bit absurd, really.
You begin to wonder when they'll get the picture.
Well, I think they finally have.

I'm going to briefly rewind to the specialist appointment I had on the 25th Sept, the one I was really nervous about.
I found myself pleasantly surprised by the outcome of said appointment.
My specialist, Dr Tait, is incredibly empathetic and understanding for a male doctor, certainly much more so than a lot of the female doctors I've seen in the past - Seems ironic, no?

He is genuinely as intent and eager to find a solution as I am, and has a way about him which makes you feel extremely calm and confident.
We discussed my options, which if you remember from previous posts were either having my ovaries removed, or using Zoladex to put me into menopause.

After the first hospital stay in August, I was under the impression that is was either one or the other - What they failed to explain to me was how Zoladex would be beneficial in terms of aiding the decision to remove ovaries later on down the track.
The basic jist of it being, if they temporarily shut down my reproductive system (thus putting me into menopause) they would would be able to ascertain whether removing my ovaries would actually be the answer.

Dr Tait was very firm with his stance on Hysterectomy or, in my case, Oopherectomy in someone my age. He had said that, provided the Zoladex was effective in relieving my symptoms, we would begin the waiting process to have my right ovary removed.
In someone my age, he's very much about the 'gently, gently' approach.
With the vast majority of my issues stemming from my right ovary, his hope was that by removing the offending ovary, we would be able to kiss goodbye my recurring issues - Maybe not completely, but most certainly lessen the severity of them.

However, I have just today had my third round of Zoladex, and since the 25th of September I have had two more admissions and my symptoms have only worsened... considerably.

This now leaves us at a cross-roads, as the Zoladex is quite clearly not doing what we were hoping.
Am I successfully in menopause?
Well shit.
You better believe I am. I feel like a fucking child again - I'm a complete mess. I'm having to reteach myself the basic fundamentals of living, ha!
Just yesterday I had a rather embarrassing battle with a door, as I seemingly forgot how to successfully open and walk through it.
I am just infinitely grateful for the fact I was home by myself at the time... As it promptly saw me burst into tears out of sheer frustration and stupidity.

SO.
With that revelation, we're back to the drawing board.
It is now looking as though the only viable option is to have everything, and I mean everything, removed.
Ovaries, uterus and quite possibly, cervix. 
(With a bit of luck, my cervix hasn't been too badly ravaged by the Endo and they'll be able to leave it there - I do not want to be worrying about a prolapsed bajingo on top of everything else)        
The reason for taking it to this extent is to remove all the affected tissue and the offending organs which cause this dastardly disease - Thus hopefully ending my plight.
Of course I would have other issues to worry about afterwards, like the possibilty of adhesions, hormone replacement and all the wonderful little freebies that come along with early menopause (increased risk of cardiovascular disease, osteoporosis and bone density issues, 50% increase in the chance of breast cancer in relation to the HRT, to name but a few)

It seems stupid to get wound up about it again, but I got used to the idea of only being short of one ovary.
I'd have been able to carry a child, possibly even conceive naturally... But if this total hysterectomy goes ahead, well... I can kiss that opportunity goodbye.

I think the thing I find most frustrating about my situation right now, is that I know for a fact that pregnancy can help hugely in alleviating Endometriosis (provided you're actually able to conceive), but at this point in time, I'm not in a position to be getting pregnant, let alone considering it.
So I have to establish whether I want to grin and bear it until such time as I am, or just get it over and done with and look at other options later on down the track.

Just when you think you've got everything sorted and you're happy with the decisions you've made, yet another curve ball gets thrown your way.
I was getting good at catching these curve balls and tossing them back to the pitcher, but at this present point in time (and you can blame it on menopause or a general feeling of not giving a fuck any more) these curve balls keep hitting me. 
Smack, bang in the ovaries, head and heart - Where it hurts the most.


Until next time,


Love and Sunshine,


Serenity
xx