Thursday 24 January 2013

Sticky Date Pudding

Yes.
Yes that title is horrendously innuendo laden.

I've always been a terrible sleeper.
I am much more of a night owl than a morning person, and I find it extremely hard to get up in the morning.
This isn't due to lack of routine or sheer laziness. I just genuinely cannot seem to function properly before 11am.

I could go to bed early, with the best intentions of getting a good nights sleep, but chances are I won't get to sleep before 2am.

The fact that I am enduring horrible night sweats and hot flashes during disgustingly muggy nights only increases the discomfort levels, and in turn, my ability to get a decent nights sleep.
I've tried sleeping in the nude, with cold wheat packs, with the window open, with nothing but a sheet, limbs hanging out of the side of the bed, flipping pillows, cool flannels.
It doesn't matter... I still wake up hot, bothered and with a sticky date.
(Mmmm, sweaty butt. Aren't I just the epitome of beautiful?)

I've started to notice that lately, around two in the afternoon, I just crash - the joint aches and back pain will increase and I feel exhausted.
Of course I push on and try to fight it off, thinking that, surely if I am this tired now, by the time I go to bed, I will be absolutely shattered, then HEY, PRESTO. Decent sleep.

Ah.
No.

It totally doesn't work that way and it is beyond frustrating.
I genuinely cannot remember the last time I had a good nights sleep.

In other news, I finally found those BGP's I keep talking about, and finally put them on and laid a complaint against the incompetent muppet of a doctor I have had the pleasure of dealing with on more occassions than I would like.
I heard back from the Health and Disabilities Commission (where I laid the complaint) and was told they were currently investigating my claims and that I could anticipate hearing back from them in approximately six weeks.

In approximately six weeks, I will also be sitting down with my specialist, discussing where to from here.
If that's not the discussion that is had. Then consider yourselves warned when I say all hell will break loose.

I want my life back.
So badly.

Today was ROUND FIVE of my Zoladex, and I am currently sitting here feeling very sorry for myself, with a puncture wound in my belly and a headache that would knock ol' Cassius Clay for six, but I have turned the brightness of my screen right down, sitting in darkness and silence and enlightening you all with my tales of woe.

Don't you feel special?

The fundraising hasn't taken off quite as much as I would've hoped, but I'm hoping that with your help, we can reach my target.
So, please, if you're able to, make a donation... If you can't (in fact, even if you can) please post this link on your blog, Facebook page... Whatever means of social media you prefer. Just please, don't make me get on all fours and beg for it.


As always my lovelies,

Love and Sunshine
(not that there's any of that here today in Wellington. Summer? Pfft. Fat chance)


Serenity
xx
*NB: Once upon a time, a long time ago, getting on all fours and begging for it was for recreational purposes.......Yet another thing Endo has taken away from me.




Tuesday 15 January 2013

High noon with Endo

Today sucks.

I want today gone.

It is currently 12:27 in the afternoon and I have been attempting to cope with the ferocious pains which have been thrown at me for the past three days.
As I type this I am sitting in a hot bath, in the darkness, listening to classical piano in a desperate bid to rid myself of this horrendous discomfort.


As it stands, I'm not sure which is hotter.
The tears of frustration sliding down my cheeks?
The white hot fury which is coursing through my veins in retaliation to succumbing to this awful disease once again?

The temperature of the water is undeniably hot.
The hot flashes that keep plaguing me certainly don't help.

Is it a combination of all of the above?

Why am I so seemingly incapable of getting a hold of things and coping?
It's certainly not for want of trying.

The Tramadol isn't helping.
The Sevredol isn't helping.
The tri-cyclic antidepressants that they have me on aren't helping.

The heat packs, meditating, diet changes, lifestyle changes, yoga, homeopathy, reiki, acupuncture, regular massage or immersing myself in other activities hasn't helped.

Why does nothing help?

I am sick of putting on the brave face.
I'm even more sick of feeling sorry for myself - and you know that's bad, because I very rarely allow myself to do so.

My hospital bag is packed.
I just have to make the call.
I desperately don't want to.

I don't want another trip to the A&E where they announce it's just another acute exacerbation of my pain, where I will then be taken up to Gynae, only for them to tell me that there's nothing more they can offer me, but that they will endeavor to get me as comfortable as possible.

I get so embarrassed by every trip I make to the front desk of the emergency department, every time I have to re-explain my situation to the triage nurse, the registrar on ED who happens to be lumped with me.
It makes me feel like shit.
I worry they they don't take me seriously because I've been in there so often.
That they think I'm some kind of hypochondriac or attention seeker, or a druggie who wants morphine.

I know I'm none of those aforementioned things.

But, given how calm an exterior I portray, it must be hard for them to believe I am a 10/10 in the pain scale when I am able to carry on a conversation, with only a wince every now and then.
I refuse to play the role of the screaming damsel in distress - I've played that role before. It does nobody any good.

I really don't want to have to become Growly Ren and start demanding they do something constructive, because I don't feel as though I should have to - if I'm in there regularly (almost routinely) with the same issues, only heightened, then surely they should be putting their large student debts to use and realize that there is an issue at hand which needs addressing, and that the means by which they've been addressing them needs to be reviewed because clearly they aren't doing the business like they're supposed to!

Aaaand *breeeaaath*

I know what I need to do, so I shall leave this here and put my BGPs (Big Girl Panties) on and go do it.

Ugh.

 

Monday 14 January 2013

Whoa Nelly...

I can't say I am particularly fond of Nelly... And not "I'm like a bird" Nelly.

I'm talking about pants-down-around-his-arse-bandaid-on-his-cheek-do-rag Nelly.

But, never before have I been able to relate to such eloquently written Hip-Hop songs. Until now.

It's getting hot in here (so hot) so take off all your clothes

I am, getting so hot, I wanna take my clothes off
It's getting hot in here (so hot) so take off all your clothes
I am, getting so hot, I wanna take my clothes off

 Uh, uh, uh, let it hang all out

(And good gracious, my arse is more than just a little bit bodacious, even if I do say so myself)

I would never have regarded him as a lyrical genius before, but nowadays, I swear on Ryan Goslings abs - A chorus has never resonated with me so much.

Now. Lets just clarify. I'm not a sweaty person.
I've never had issues with excessive, or even noteable, for that matter, perspiration.
No.
I'm a lady.
I don't sweat.
I glisten.

These days, however, the sweat is pouring off me. I feel disgusting. I feel like a Swamp Monster of some description.
I just seem to sweat like a whore in church... All. The. Time.

I live out the vast majority of my days swanning around topless and in shorts because I cannot handle the feeling of shirts clinging to me. It's unbearable.
Even just having that little bit of fabric from my bra strap clinging to my back is more than I can stand - But, because I want to maintain at least some level of dignity (as well as sparing the eyesight of those around me), I leave my bra on.

I was warned of the possibilty of night sweats, and I have suffered from them in a minor capacity, but I was not prepared for that consistent presence of this awful sticky feeling.

Now, whenever I have a hot flash, it's accompanied by a sweat goatee, a glistening forehead and those delightful beads of perspiration that run down your spine and down your cleavage.
I'm now more determined than ever to lose weight, as I am sick of drying sweat from the cracks and crevices of my womanly shape - This is the one time I would actually gladly consider taking on a waif like appearance.

Nothing more attractive than zebra stripes on your shirt, caused by the shirt itself being folded under your boobs.

So, if you'll excuse me. I must go take my third cold shower today, change into my fourth shirt of the day, wipe down the couch and lay down a towel and turn the air-con onto the 'Arctic' setting.

Menopause.


Sure is glamorous.

Friday 11 January 2013

Consider this a warning

In particular, these are the ones I've been accosted with:

You're just lazy and want people to feel sorry for you

Maybe if you lost weight/tried this/tried that/had a better attitude

Other people have it a lot harder than you

Man up

I work really hard and pay taxes so people like you can sit on your arse all day.

It's not always what you say, but how you say it and the way you act when you say it.

I don't want to spend so much time in hospital

I don't want to be on a government benefit

I don't want to be incapacitated and unable to do things

I didn't ask for this to be the way my life is

I cope with it the best way I know how to.



Food, glorious food.

It's no secret that I am obsessed with food.
Seriously.

I love cooking and I especially love eating.

A few things I absolutely cannot seem to live without these days:
  • Crispy M&M's... The jumbo share bags. And let's be honest here, I never actually intend on sharing them.
  • Ready salted chips and gherkin relish dip.
  • Poached eggs on english muffins (or full blown Eggs Benedict if I have the fixings)
  • A nice glass of white wine - Tipple of the moment is Giesen Riesling. Mmmm.



Some might argue that wine isn't a food.
Well, technically, it's not - But it's made from grapes, which is a food... And therefore I rest my case.
(And if you still want to argue the toss, be prepared for a throw down)

With the weather being as hot and stuffy as it has been (coupled with my hot flashes), I have found myself with less of an appetite (and more of a drinking habit).

The other night, I rediscoved my love for the Almighty Salad.

When I make something like a salad for dinner, it's never just a few leafy greens and a bit of dressing - Oh no. I could feed small tribes with my dinner salads.

The other night, I made this delightful wee dish:


Now, asides from setting my mouth and sphincter on fire - due to fancying myself a bit of a Rachel Ray and eyeballing my cayenne pepper dosage-  she was a mighty fine meal.

In the last 4 months, I've been dabbling in the whole 'Clean Eating' buzz. It's not that it's hard, but it's so much easier to continue doing what I've always done. But I've made it a goal to eat clean at least four times a week.
Slow and steady win the race, right?
It's not all in relation to me wanting to lose weight, but more to do with making better choices.

Anyhow, this is my:

Thai Inspired Orange and Coconut Chicken Salad


2 large chicken breasts (or 500gm chicken tenderloins)

2-3 oranges

100gm raw cashews

1 bunch spring onion

1 red capsicum

250-300gm bag of baby spinach 

1 head of broccoli

Fish sauce

Coconut milk

Cayenne pepper

Brown Sugar

 

1: If using chicken breasts, cut to 1-2cm thick slices. Place slices (or tenderloins if that's what you're using) into a large bowl or dish suitable for marinating. In a jar or a jug, combine 1/4 cup coconut milk with 2TBspn fish sauce, 1-2tspn cayenne (depending on how hot you like it). Pour combined mixture over the chicken pieces, cover in cling wrap and refrigerate for a minimum of 30 minutes (the longer your marinate, the better). 

2: Lightly toast cashews in a non stick pan on medium heat - Keep a close eye on them and shake pan frequently to reduce risk of burning them too much. You just want them to be slightly blackened. Pop to one side.   

3: Pull the chicken from the fridge, and place slices/tenderloins on a grill tray/rack and grill until cooked through, turning each piece midway through. (You could also pan-fry them using a tiny amount of EVOO).

4: While chicken is cooking, lightly steam your broccoli, slice up your capsicum, spring onion and one of the oranges. Toss that all into a bowl, along with the bag of spinach and the toasted cashews. Once chicken is cooked, place that on top of everything else.

To make a dressing, in a jug combine:
Juice from one orange
4 TBspn Coconut milk
1 TBspn Fish sauce
2TBspn Brown sugar
1-2 tspn Cayenne (depending on tastes)

Stir briskly and pour over salad.

SO. DAMN. TASTY

I do hope you enoy this as much as I do, it's really bloody easy, looks great on the plate and is REALLY good for you whilst being extremely filling.

Righto, well... I have a glass of wine to pour, sorrows to drown, eggs to poach and muffins to toast.
Clearly tonight is *not* a clean eating night, and frankly I'm too tired and too busy to give a toss.

I have the Weenie as of tomorrow afternoon, so normal meals shall commence then.

Who knows, we might even do some baking together... God knows how much I love sharing in this:

It's also been a while since I last ate raw cookie dough


Love and Sunshine,


Serenity
xx 

Tuesday 8 January 2013

Dearest,

This letter has been in circulation for about 16 years.

Funny how over a decade on, we are still suffering from the same level on misunderstanding or ignorance.

 

Have a read - if you are a sufferer yourself, I'm sure you will appreciate this just as much as I have, as well of the hundreds of thousands, of not millions of those suffering before us.

If you know someone who does suffer, of just lack understanding, here is a good example of how we may feel but are too afraid to vocalise:

 

 

"Dear Parents, Partners, Friends, Families, Employers & Doctors:

We have spent the last years of our lives apologizing for being stricken with a disease we did nothing to contract, and we can do it no longer. We are asking - again - for your understanding. We are not responsible for failing to live up to your expectations, the way you think we should. What you seem to fail to realize, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and our capabilities.

We are not "lazy," we are not "whiners," we do not make the pain up "in our heads."

We have endometriosis.

We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibited the disease in our every day appearance. What you don't see is what our organs look like on the inside, and you don't see what living with it has done to our emotional well-being.

When we call in sick, it's not because we need a mental health day or to "go shopping." It's because we can't get out of bed from the pain. Do you think we like letting our careers suffer? Would it be easier for you to understand if we said we had cancer and looked the part?

When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it's not because we are "flaky women." It is because we are taking drug therapies to stall this incurable disease, or perhaps it's because we have come close to the breaking point after dealing day in and day out with the pain for which there is no defined cause or absolute cure.

When we can't have intimate relations with our partners, it is not because we don't love you or want to. It's because we can't. It hurts too much. And we aren't feeling real attractive right now.

When you, our parents, can't understand that since you are healthy, we should be too, but aren't - try harder. We don't understand it either. We need your support more than anyone's.

When we can't go to family gatherings or accept social invitations, it's not because we don't wish to share in your fun. It's because we feel like pariahs. You are all having such a nice time with your children and loved ones - we can't remember the last time we had a nice time, or the last time we were pain-free. We can't have a nice time with our children (some of us); because we were robbed of that chance before we were old enough to even care about having them in the first place. Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend enough quality time with our children, or worse - that we might have passed this disease down through our genetics onto our daughters?

When you married us, you didn't know that we meant the "in sickness and in health" part literally, did you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakers, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of endometriosis than even we are. You are appreciated more than words can ever say.

Don't give up on us now.

As a medical professional, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in, or worse yet, that it is "normal for a woman to hurt." Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us into oblivion so that we will quiet down. We want answers and it is your job to provide them. You were the ones that took the oath to heal - why do we have to try to do your job? Do you understand what it means when we tell you that we literally can no longer live a normal life and care for ourselves and our families? We're not drug seeking; we're answer seeking.

Are you not up to the challenge to find the answers?

To those we have called friends all our lives, why have you deserted us when we needed your compassion and understanding the most? Do you see the selfishness of your actions? When we can't get together with you, it's not because we don't like you or we don't care - it's because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor's appointments, what surgery we are going to have next, and why we feel so sick all the time. This is not about you - it never was and it never will be. It is about us. Please try to remember what the term "friend" means.

Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pains we can't understand and mental anguish we can barely cope with some days. We face a society daily that doesn't even know the word "endometriosis," much less the ramifications of living with the disease. We have to face uneducated and unsympathetic doctors who tell us "it's all in your head", and "have a hysterectomy, it will cure you", or "get pregnant, it will cure you", when we know that it won't and have been dealing with infertility for the last however many years. Can't you see that?

We have to fight to get medical treatment that insurance companies don't deem necessary, or worse, we deplete our savings because aren't able to obtain proper care unless we pay for it ourselves and travel thousands of miles to the rare specialists that are few and far between. We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of a war we wage just to try and live with some modicum of normalcy - don't make it harder on us by not seeing the reasons why.

Endometriosis is a disease that affects all of us.

Take the time to learn about it and understand. If you can do that, and you can join us in the battle for a cure, then we can one day return to our old selves and live a normal, pain-free life. We can have healthy relationships with our loved ones. We can stop taking the painkillers that numb our suffering to a degree and become part of the living again.

Please don't judge us and declare that we are all the things we are not - until you have lived with this disease ravaging your mind and body, you cannot speak on it.

Whatever doesn't kill us makes us stronger, someone once said. While endometriosis may not kill our physical body, it tries like hell to kill our spirit. It tries to kill every hope and dream we ever had of doing the things that make us happy. All of us are out here searching for a cure to put an end to the disease...and we are holding our heads high in spite of endometriosis and fighting it every single day.

We are asking you to take part in that battle and work with us beating it. Wouldn't it be nice to have back the daughter, wife, friend or loved one you once knew?

Think about it."

 

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