Keeping positive

Happy Wednesday everyone! I hope you ladies are hanging in there and staying as strong as I know you can be.

Personally, I'm doing ok. I've had some flare up's over the past few days and again the pain is heavily concentrated on my left ovary but my mind is in a really positive place and I have to admit that it really does help to express it rather than hold it in. Whether it's talking out loud, speaking with my Mum or Sis or even writing it down its proved very useful in the past and especially of late to keep me on track.

Living with Endo can be tiring and difficult at times and trust me it's not always been easy to be bright and bubbly about the situation. I've hit my walls and obstacles but with some support and the determination not to quit I've kept going, moving forward because looking back is ok to learn from but it's not a place we should live in.

I take each day now as it comes and try not to think too far into the future. I've come to realise there are limitations to what I can contribute on my life. Endo certainly isn't one of them. I can seek treatments, take care of myself, mind, body and soul and genuinely keep a positive mindframe. Whether my disease advances or lays dormant isn't something I can control so I'll do what I can, when I can and right now that's working for me.

The days when I'm in pain are annoying, tiring and sometimes quite upsetting but it's only temporary. For me the intensity does pass and while there's day pain you become accustomed to it. We truly have no understanding of what our bodies are capable of tolerating until it has to.

It's not an ideal way of life "living in constant pain" but who's to say what's ideal or not? As long as I can cope I will keep going and having positive people in my life works for me.

Love to my Endo Sister's
XxxxxxX

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.