Midweek rant

Feeling somewhat frustrated on Tuesday afternoon trying to make my way through a very busy City Centre in hail, rain and shine (this is Spring in Ireland lads) I felt the familiar twins of a cyst twisting on my ovary, pinching me, building pressure and taking my very breath away. I can be as stubborn as a mule at times so I won't given and sit down when I feel that pain although this could also be due to the fact that I would consider myself to have a lot of inner strength (I'm the year of the Ox, might have something to do with it?). I did however pull my snood up over my nose, take some deep calming breaths and did my best not to publicly break down crying. Would have been mildly embarrassing. This was the first incident the boyfriend has actually witnessed and to give him the credit he's due he didn't freak or overly fuss. It can be incredibly difficult for people to get that balance just right but I think he managed it ok. I got through the initial waves a pain and spasms and it wasn't until later that evening that the cyst finally burst. I am prone to fluid-filled cysts and have been to A&E a few times because of them.
(If you have any signs of symptoms of cysts you should present to your Doctor of Hospital)
I get these quite regularly and some are worse than others but it's amazing how much pain we can actually handle. So, when I stumbled upon this graphic during the week I found it incredibly apt and I just thought it sums up alot of the time how women say to me they feel.

We'd love to say "up yours" to Endo, to our uterus, to our tubes, ovaries, wombs, colons, appendices and any other part that aches and gives us terribly unbearable pain. This should be put on a t-shirt. It's eye-catching enough to get people talking anyway.

On Monday I began taking Cyklokapron. It's something I do not like to rely on or have to use but it's time as I've been suffering with menorrhagia again. That and Primolut have become the only two "solutions" for me. According to my Specialist they need to be as conservative as possible with their approach. They must try to preserve my fertility and apparently there are only so many times they can "rotate" the ovaries.

Everytime I attend the hospital I see a different member of the team with a different viewpoint, a trying to make a name for themselves. When you're eighteen they want to operate and pump you full of drugs and hormones and damn the long term effects but ten years later when your chart is one of the biggest the have, when nothing's worked for you, when even the specialist has said "I dont know what to do with you" you feel like you have become a nuisance to them. You're now that black mark on their record.

Should it be this way? Of course not! But how does one person make that change?
By saying;

Stay strong my Sister's. Love you ladies XxxxX 

Possibly the best advocate

Over my time campaigning for awareness I have come across one name time and time again. If you have just been diagnosed, are still learning about Endometriosis or just want to know more I think Nancy Peterson is among one of the many brilliant advocates we have for Endo. You can find info here;

http://endometriosis.org/news/support-awareness/recognising-endometriosis-advocates-nancy-petersen/

A shout out to my Supporters

Recently I've noticed on Facebook a trend on some of the Endometriosis Support Groups to have a "shout out" to your biggest supporter. It's a fantastic idea and a greatway to let your lived ones, friends, family whoever really, fur babies included that you acknowledge and appreciate their support whether your at the beginning, middle or end of your journey with this illness.

I know sometimes. I get caught up with different things and especially when I'm having a bad time with my Endo I can forget about what my family might need.

Honestly my biggest supporters have to be my Mum and Vicky. Mum has been there with me all of the way since age 11, all the way through the tests, the surgeries, the treatments and of course at times the somewhat painful, uncomfortable and degrading side effects.



How she put up with me when I was going through rounds of Clomid I'll never know. I was a hormonal mess. Between that Decadently and Depo Provera shots, HRT, trips to A&E, hospital stays, countless hot water bottles, discovering the electric heat pad for me. kindness, love and encouragement. I think the Woman  deserves an award. My Mum means the entire world to be and there is.no possible way I'll ever be able to thank her for everything.g she has done for me and for everything.g she will do for me. I categorically live her with every fibre of my bring and truly believe she's entitled to a shoutout for everything she has sacrificed to make sure I'm well and rake care of. She doesn't let it show too much how difficult it is fir her to watch me go through pain and I know she feels helpless but that kiss, that cuddle, the hug every morning and the love you every night. That's what get you through. I try my best to make her proud and be strong for her and Vicks.

Vicky is like a breath of fresh air. She was about 12 when I first attended the hospital and I do recall her very kindly help.g me ti shower the day I came home from surgery. She even shaved my legs. Fond memory. :-) it's silly things.g's that I remember, that I'll hold onto. Vicks always listens to me, gives some amazing advice and is growing into an incredible young woman. She very sweetly offered to be my surrogate if I ever got to that point. The thing is I know she would actually do that for me. We have a bond that transcends time and space



I don't tell her often enough how unbelievably proud I am of her and her accomplishments to date. She will most definitely leave her mark on this world. You just can't be around and not feel happy.
The first time I saw her I felt an overwhelming surge of live for this tiny being. I took her hand and she held my thumb so tightly that it was there, in that very moment we bonded. Our twin souls had found each other again. she is my Bobi and I her Pipi. Only we know what that means. We have our very own language and the five years between us that once seemed do monstrous a gap is no just the blink of an eye. So she too deserves a shout put. For all the times I was anf will be moody, snappy and too sarky I love you Bobi for loving me and never once making me feel like damaged goods.

You help build my confidence and make me believe in who I am. I could go on c and on really but I must stop.

I am so lucky to have these two strong. Beautiful. Intelligent women on my life.

So thank you!

XxxxX

The Three Musketeers 13th March 2014
Million Women March for Endometriosis

Mum and I with a somewhat blurry Coco.

My Bobi and I. Cuddles! Always makes me feel better. Endo had a good hold on me at this point but Vicks is keeping me smiling here.


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Just before Christmas 2013. Vicks and I being silly and makeup free.When we get hyper it's like being a kid again with her. I hope that never goes away.

Take a deep breath and place bot feet firmly on the ground. Tap into that natural raw energy from the Earth, draw on it and face each day as it comes.

Personal Discovery

I'm aware that I can be a somewhat stubborn person. I can dig my heels in about an idea and refuse to give in or go along for peace sake. So I do not enter into situations lightly. I like to assess, carefully calculate any risks, know my opponent/s and gave all the information to hand so to speak. This has mainly been my approach with fighting Endo. To learn as much as I can, to study and listen to my body, keeping a journal of important information for my Doctor's so we can attack the situation. It's proved very useful over the years but has maybe leaked into other aspects of my life and it's only recently that I've realised this about myself.

There are certain social situations that have occurred lately and to be honest for once I've not immediately known how to react. I've had to go off the cuff. It's surprising to me because I've dealt with some fairly complex situations and logic has always been my companion. Chemistry and biology it seems now is my challenger. I have built up a wall, an invisible, theoretical wall but a shield nonetheless. Here's the thing. My filter is wobbly. I'm ready to deflect comments straight away, make light of situations or do anything that involves my not actually having to answer a personal question. Comedy and sarcasm are two ways I respond in many situations. Other than than I can get lost inside my head.

Here's the other thing. My charming, handsome man I've been dating is incredibly different from other people I've known. There's a strange sense of coincidence's and without meaning to we share similar thought patterns and beliefs. It's a statistical anomaly for the scientific minds and a happy coincidence for the wishful thinkers. But for those of us who have a deeper spiritual connection we may find something else is at play here. Something you can't control.

You don't necessarily want to yet part of you wants in on the plan. Whatever it is, I know I don't stop smiling when he's around and he's already charmed my Sis and Mum, says incredibly sweet things, thinks of the minutest detail that let's you know you've been thought about, makes me feel really comfortable and I'm almost waiting for someone to call "cut!". It's crazy, ridiculous and slightly mad.

But one must try to keep a level head here. I'm not the swoon over the guy type. I'm also not usually this frank about discussing any matters that may fringe near my "lub dub machine" but there we go. 

To continue my ramblings,  I can literally count on each hand the people in my life who I would consider to actually "know me", the real me, the one without the shield, free from constraints of sarcastic deflectation. I'm ok with that. I trust those people and yet even with them sometimes my guard will go up. (Yes, I'm truly aware the issue is within myself and I'm a work in progress so no need to point it out.) 

He wants to know more and more about me and for once I am not hesitant to share my secrets.  To say I feel bare when he looks at me is an understatement. To quote James Cameron, it's like a scene from Avatar, he's actually said; "I see you" and I know he's not referring simply to my physical being. I also know it's not simply just a physical attraction. 

My thoughts are jumbled. I know I'm a culprit of overthinking but I need to get a grip here. I'm like an open book at the minute and I'm unsure whether to reign it in or let my mind run wild and free. Just let go a little bit, loosen these constraints I've held over myself for so long.

I'm on the edge of that cliff, the hand is being held out for me. Do I grab hold and jump? I guess I'll find out soon enough.

Love you guys XxxxX